#1501 Dancing Muppet
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.
Ali went from pork insulin to cutting‑edge looping and shows—with effortless chill—that life with diabetes really can be OK.
+ 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.
Speaker 1 0:00
Hello friends, and welcome back to another episode of The Juicebox Podcast.
Speaker 1 0:15
Ally is Australian. She's 52 years old, and she's here today to tell you that it's going to be okay. Please don't forget 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. AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five, free travel packs in your first box. So make sure you check out drink AG, one.com/juice box. To get this offer, don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com I created the diabetes variables series because I know that in type one diabetes management, the little things aren't that little, and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise and those other variables that impact your day more than you might think. Jenny Smith and I are going to get straight to the point with practical advice that you can trust to check out the diabetes variable series in your podcast player or at Juicebox podcast.com this episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about mis Bolus is or miscalculated carbs thanks to meal detection technology and automatic correction doses, learn more and get started today at Medtronic diabetes.com/juice box. Today's episode of The Juicebox Podcast is sponsored by the ever since 365 the one year where CGM that's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the ever since now, app no limits. Ever since, this episode of The Juicebox Podcast is brought to you by my favorite diabetes organization, touched by type one, please take a moment to learn more about them at touched by type one.org, on Facebook and Instagram. Touched by type one.org, check out their many programs, their annual conference awareness campaign, their D box program, dancing for diabetes. They have a dance program for local kids, a golf night and so much more touched by type one.org. You're looking to help, or you want to see people helping people with type one. You want touched by type one.org?
Ally 2:57
Hi, I'm Ali. I live in Australia, and I thought I'd like to come on the podcast, because I've had diabetes for a really long time, and I have had an excellent life so far, and plan to continue having an excellent life. And I just thought that might be reassuring to some of the newly diagnosed mums and dads of little kids who are really worried and panicky.
Speaker 1 3:21
That's awesome. Thank you. I appreciate you doing that. Where do you get the feeling that they're worried and panicky?
Ally 3:27
Oh, your Facebook group. Hello.
Speaker 1 3:31
So interesting. I watched this conversation happen half a dozen times a year, right? Yep, a post will start with a group of adults who are just like, my god, you guys are going crazy, like they're gonna be okay. And I'm always like, Yeah, you don't know that you're just okay.
Ally 3:48
True, true. That is, that is correct, yeah,
Speaker 1 3:52
yeah. But tell me how it I'm genuinely interested. How does it make you feel knowing that you had a good life and seeing them worry about it going opposite.
Ally 4:05
It really worries me. I think these poor little kids, they're not going to have the same freedom and just a normal life that I did. Why do you think that? Well, I was basically left to my own devices and had a wonderful time.
Speaker 1 4:26
So in fairness, Ali, because your experience ended well, yeah, you're afraid that people who don't have your experience will end poorly.
Ally 4:36
No, I think they will be very safe and well cared for and possibly have far more delightful glucose than I managed. Okay, but it's the whole, you know, over protected, over helicopter
Speaker 1 4:53
parent thing. I'm playing devil's advocate. I'm going to go back and forth here on this one a little bit. Okay, yeah, yeah, sure. Do you imagine that? People who grew up that there's no one who grew up with somebody paying very close attention to their health that also felt free. I
Ally 5:10
knew some people growing up, and I don't think they had the same experience I did, and I know some people growing up that probably had a very similar experience that I did, yeah, and I kind of know who's got the better mental health.
Speaker 1 5:27
Okay, good point. If you were unwell physically right now, would you still be making this argument? If you had trigger finger and frozen shoulder and neuropathy. Would you be on here? What would you say? Then? Do you think?
Ally 5:45
I don't know. I think I would be in quite a different space. Yeah, no, I know, yeah, yeah. And that. I get it. I get it. People want the best for their kids and the best for themselves, but at what price?
Speaker 1 6:01
I don't know. What's the answer, yeah, that's the question. I
Ally 6:04
don't I don't think there is, I don't think there is one to be honest, I know I have been lucky.
Speaker 1 6:10
That's genuinely how you feel, that you've maybe just lucked out a little,
Ally 6:14
yeah, really. But also, I can say confidently that my control was never awful.
Speaker 1 6:22
Why? How did you accomplish it? First of all, how old were you when you're diagnosed? I was five, five, and you told me before we started, you're 52 so yeah, 47
Ally 6:31
years. Yeah, coming up. 47 years. Good for you. Yeah.
Speaker 1 6:35
And back then, obviously, well, not even obviously, were you even beef and pork? Pork, pork. Insulin. Okay, and so you've transitioned through you've seen a lot of it, that's for sure. Oh yeah, yeah. What was your parents reaction? Do you know? Have you spoken to them in hindsight? Like, how did they manage? What did they think to do?
Ally 6:56
Oh yeah. My mom diagnosed me. She was not shocked and horrified. She was like, Oh, great. Think the kids got diabetes. Terrific. Here. Pee in this clean glass jar and we'll take it to the GP.
Speaker 1 7:10
Why was she so comfortable around it? Other people in the family
Ally 7:15
have it? No, she's just not a Panicker. None of us are. So, you know, just a few signs, and it was when I I never got sick, I guess I started losing a little bit of weight, and she went, Ah, that's abnormal for this kid. Yeah, drinking and peeing, yeah, kids got diabetes. How
Speaker 1 7:33
many brothers and sisters do you have just me? No kidding. Well, you don't usually. So this is interesting. So your mom is? Your mom is your mom still with us? Yeah, she's fighting fit. What did you wait? What did you say? She is fighting fit, fighting fit. Gotcha, okay, yeah, yeah, you don't normally see the mother of an only child. Be so chill.
Ally 7:55
Yeah. I don't know why she is, but she is, always has been. It's
Scott Benner 7:59
not weed, is it? No, she wasn't a hippie. No. She
Ally 8:04
spent the better part of the 70s trying to get stoned, and it just doesn't work for it.
Speaker 2 8:10
How many times did she try? Oh, quite a few.
Ally 8:15
And then it was only she. She eventually tried a water Bong, and that worked. And all of a sudden, tomato and cheese sandwiches the most hysterical concept ever.
Speaker 1 8:28
That's what I'm saying. Was your mom, like a free spirit, yeah, yeah. How about your father?
Ally 8:33
Less so, less so free spirit, but very chill. Okay, you know, you never let anybody see you're panicking.
Speaker 1 8:41
Do you think that it's more just your mom's but Well, first of all, let me ask this, are you chill like that? Like, what's your Yeah, yeah, you more like her, more like him.
Ally 8:51
Oh, look, people say we're clones, my mom and I, but my brain works probably a little more like my dad.
Speaker 1 9:00
Okay, who had control of the diabetes? Like was there? Was it both of them or one of them? Do you remember from being a kid? Today's episode is sponsored by a long term CGM. It's going to help you to stay on top of your glucose readings, the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGMS, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox, to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year at my link, you'll find those details and can learn about eligibility ever since cgm.com/juice box, check it out. Music. Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system, anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox
Ally 11:06
mom spent the most time with me in in the hospital, learning, obviously, but dad, you know, visited and everything. But the Children's Hospital where I was admitted for education was two and a half hours away from where we lived, so he had to work. And so, yeah, mom did, I guess, most of the learning and education, but day to day, yeah, day to day, day to day, we just, well, I was learning as well. So we counted the carbs and did the injections and peed in the test tubes. And, yeah,
Speaker 1 11:38
that was it. And so, so for people that, how do you manage now? Like, what do you do today? Closed
Ally 11:43
loop. It's a commercial closed loop. I'd actually prefer to use DIY, but the only real option we have is Omnipod, and they don't work
Speaker 1 11:55
for me. Okay, so you're not good, was it? Maybe you think the infusion doesn't work fuel it,
Ally 12:00
yeah, just eat dribbles down my leg or, um,
Scott Benner 12:05
yeah. So I don't think that's the way you want to put that. Allie,
Ally 12:10
okay, fine. There is some leakage of insulin around the infusion site.
Speaker 1 12:16
It's Monday morning, it's early, and where you are is late. I was like, Wait, what is she saying?
Unknown Speaker 12:21
Yeah. Okay,
Speaker 1 12:25
fine. So, you know, you know, modern management and so you have a real, that's my point. Is that you have a real, like feeling for how it's been over the last 50 years, really, yeah, yeah,
Ally 12:34
okay. And I use the latest and greatest now. Well, in Australia, you know the latest and greatest we have access to. I use cam APS at the moment. And look, it's not the best fit for me, but it'll do for now. Okay.
Speaker 1 12:50
How did you go from being like chill to using a closed loop system? What's the progression through that? Like, if you my point, I guess is that if your health was not an issue growing up and your diabetes didn't feel like an issue, like, why did you continue to like, why didn't you just keep doing what you were doing? I guess is my question.
Ally 13:11
Oh, well, because that would be one shot a day of monetard. I didn't
Scott Benner 13:16
mean that far back. I mean,
Ally 13:21
okay, so yeah, I Yeah. I think I needed a little more flexibility as time went on. I only started MDI when I was just about finished university for the first time, and that was because I just needed a little more flexibility in exercise, food, that sort of thing. I needed even more flexibility and fewer 3am hypos. A few years later, I've never gotten along particularly well with long acting. I don't have a huge basal requirement between about, you know, 3am and 6am and that's hypo city a lot for me, and so I, I progressed to a dumb pump, as one does in the early in the late 1990s right? There wasn't a whole lot of technology. But, yeah, I've been using a pump since 9999
Scott Benner 14:14
Wow, are you pretty early on. Then, yeah, you jump. Then
Ally 14:17
reasonably, okay, yeah, I just wanted some sleep. I was like, I need to turn my freaking basal down and get some sleep. So
Speaker 1 14:26
describe to me, like, once you go to MDI, Oh, is there a lot of hypos? Yep. A lot of management, lot of fiddling, yep, okay,
Ally 14:36
lot of fiddling, which I was happy to do. You know, I was okay with fiddling. And I already knew carb counting, because I grew up with the portion system, which was, you know, you have 30 grams for breakfast, and which is three portions and 20 grams for a snack, and then another 30 grams for a lunch, and, you know, that sort of thing. So carb counting was. And unfamiliar to me. A bit of fiddling, okay, and I always preferred to be low than high, so hypos were always a thing.
Speaker 2 15:09
Okay, where did you come up with that plan? I just feel better. You feel better. Okay, yeah, so you went with how you feel. I do not feel good. High. Never have no, I wouldn't expect you to but was the doctor telling you to do that, or that? Was you on your own? That was on my own. What were the doctors telling you?
Unknown Speaker 15:28
Oh, not a great deal to be honest.
Speaker 1 15:30
Okay, sorry, I apologize. Yeah, no, I know, not
Ally 15:34
a great deal like I'm also perhaps someone that doesn't do well being told what to do.
Speaker 2 15:41
Why is that just a personality? Yeah,
Unknown Speaker 15:45
character four. I guess it's a character. Are
Speaker 1 15:51
your parents like that? Too? Little bit? Yeah, okay, do you think it's a little bit about being an only child? I was only child for five years. It was awesome. Yeah? Yeah, yeah, yeah. You really are accustomed to things going the way you expect them to.
Ally 16:03
Yeah, yeah. And then, you know, somebody giving you instructions, and you're like, how about I just work through that and see what actually works now,
Speaker 1 16:13
did you need instruction? How were you doing? Like, I know I feel like we're jumping around a little bit, but like, let's take you to like, your earliest remembrances of a one CS and how they went through the years. Never
Ally 16:26
particularly awful. Like, I think, you know, eight I'm sorry
Speaker 1 16:30
I'm laughing because I think on my 50th wedding, wedding anniversary, I'm going to give my wife a photo book that on the front says, never particularly awful. What a lovely description you're like, it was never particularly awful. So around an eight,
Ally 16:48
yeah, around an eight. And then on MDI, it was sort of low sevens, but a lot of lows,
Speaker 1 16:53
yeah, yeah, quite a few lows. Do you remember the transition back then to to multiple daily injections? I'm trying to understand if this problem of the technology changes and the doctors can't change quickly enough to explain it to you, I think it just probably has been there through every iteration. Yeah, yeah. I mean, how difficult was that? Do you remember it like going from like, one or two shots a day to all of a sudden people telling you, like, you know you're gonna shoot this basal insulin every 24 hours, you're going to cover all your carbs with this other one. Like, oh,
Ally 17:24
I remember it very clearly. Go ahead, yeah, I chose to do that. I went to an endo and said, I need to change this up clearly. You know, this is old technology, the long acting alone with a little bit of fast acting to start with. This is, this is old school. Yeah, I've been doing okay on it, but I think I need to embrace the more modern treatment. The end I went, Yeah, Phil, try this. Did you
Speaker 1 17:54
have your mom's water Bong? Why was he so chill? I don't know, yeah, how did you hear about it back then, like, back then, how did you say to yourself, Oh, I know there's a better way. I've heard about
Ally 18:06
it. Oh, because most of my friends were already. MDI,
Scott Benner 18:10
okay, you
Ally 18:12
had other type one friends. Yeah, I just thought, oh, I don't really need that yet. I don't need that yet. I'm doing okay, yeah, maybe I need that now, how
Speaker 1 18:21
many people did you know with type one when you were growing up?
Ally 18:24
Oh, lots. Really? Yeah, because, well, when I was little, you got chucked into kids camp for a week every year, and you made all sorts of buddies. I don't know
Speaker 1 18:35
if I'm maybe not going to call your episode chucked into kids camp. That's where you made your friend. Okay, so there was, I was
Unknown Speaker 18:40
I was six. The first year I went six,
Speaker 2 18:42
yeah, oh, they sent you right away. Yeah, okay, yeah, all right, not
Ally 18:47
the first year. They thought that might be a bit soon. That would have been like a month after diagnosis or so, okay, so
Speaker 1 18:53
everything you would eventually know about diabetes, you guys would just trade that information amongst yourselves. Yeah. Okay, so they're over their fancy MDI, and you're like, I don't need this. But then one day,
Ally 19:05
yeah, I thought, Yeah, I kind of do okay, because I made that decision, and I presented myself to the end though with, you know, this is what I think I need to do. And he was like, yeah, cool, yeah. Try this insulin. So
Speaker 1 19:21
you get a lower a, 1c from MDI, but you're fighting more lows and then, yeah,
Ally 19:25
yeah, and they were bad. They were bad. And it was the I changed to long acting called Ultra lente, and that just about killed me.
Scott Benner 19:37
What year do you think that was? How well do were you? I can
Ally 19:40
tell you exactly the year it was 1995 Yeah, probably going into 1996
Speaker 1 19:48
thinking about my friend Mike, and how he struggled when they moved him from two shots a day to to that he never could. He just never could figure it out, you know, yeah, why do. You think, is it because you have the idea in your head about how you used to do it, and you're trying to apply that to a new system or,
Ally 20:06
Oh no, it was actually the long acting. Oh, it was the long acting just really did not work for me. I think it was longer than 24 hours, and then it it kind of stacked.
Speaker 1 20:21
Okay, so you felt like you were stacking basal, like every 24 hours. Yeah, okay, so you'd get low I'm sorry. You'd get lows around your injection time for basal. No,
Ally 20:30
anytime, anything, anytime. Yeah, they were bad. They were severe. I've never been hyper unaware, apart from a couple of months shortly after, I switched to MDI, and I was scared, yeah, I was like, This is bad. How
Scott Benner 20:46
old are you then? Are you living by yourself? Yeah,
Ally 20:48
yeah, oh, yes. I was yes, okay, yeah, I was 2425 Are
Scott Benner 20:55
you married now? No, no. So have you lived by yourself the entire time? No,
Ally 21:01
no, I've, I've never been in a long term relationship. I'm not very good at those. But, yeah, I've, I've had flat mates and lived with my best friend off and on for, you know, okay, quite a few years here and there in
Speaker 1 21:16
a couple sentences. Why are you not good at long term relationships? Oh,
Ally 21:20
don't really have a long, terribly long attention span. You're not a supportive partner, not not at all. I realized that pretty early on. Have
Speaker 1 21:33
you ever, I'm sorry, I'm gonna pivot here for a second. Have you ever been with someone that you wanted to be attentive with but just couldn't be? Not really. No, no. Do you think if you found a different, I don't want to say the right person, because it sounds like we're making a rom com, but if you found the right person, do you think it would change, or do you think it wouldn't? Probably not. Okay. All right, probably not. Do you think that's because you're an only child to some degree, a
Ally 22:00
little bit and little bit of little bit of ADHD maybe, you know, yeah,
Speaker 1 22:07
I got you don't worry. Your parents together the whole time. Yeah, yeah, okay. You didn't want to mimic that. You didn't say, like, Oh, that's nice to do that. No,
Ally 22:17
no. And you know what, I think in some ways, my mum would have preferred my sort of life rather than motherhood and marriage. In a way,
Speaker 1 22:29
you think you've gotten a vibe from her that she didn't want to be a mom.
Ally 22:33
She enjoyed motherhood in some ways, but in other ways, she's very she was very pleased when I grew up and moved out.
Speaker 1 22:42
Your dad's crying. Your mom's like, goodbye, goodbye. Oh, I
Ally 22:47
can tell you a funny. I can tell you an absolute funny. I finished school very early, as did my best friend. We were 16 when we finished school, just because that's how it works in our state. At that time, we were both young for our school year, and I turned 17 shortly after I finished school, and she was still 16, she got a job working for the post office, and needed to move to the city, and our collective parents thought it would be a good idea if I got a job in the city. I was working in the country at the time, and they thought, well, you know, it'd be really good idea if, if Ali got a job in the city and moved into fees, flat fees, my best friend and they could share expenses and, you know, look after each other to a degree. I thought, oh, yeah, cool. Yep. And so I applied for jobs in the city, you know, minimum wage kind of laboratory work I was mostly doing then, and I got a job, and I got off the phone having received this job offer, to tell my mom and dad that I got this job, and, yeah, wasn't it fantastic? The next thing I know, I'm in the back of the family car with doonas and pillows being thrown in on top of me, and we're cheering and off to the city. You
Speaker 1 24:14
got off the phone, I was gonna say, You got off the phone. Your mom had already found a bag and was putting stuff in it
Ally 24:19
pretty much, yes, it's leaving
Scott Benner 24:22
honey. Look, yeah,
Ally 24:27
but I mean, she says she was really excited for me, and because I think she'd wanted that sort of adventure.
Speaker 1 24:34
Oh, okay, you were getting what she wanted. Yeah, you
Ally 24:38
know, you know she she had because when she grew up, she had certain expectations. Okay, yeah, did
Speaker 1 24:47
your dad? I don't want to be crass, but did your dad knock her up when they were young, or something? No, no.
Ally 24:53
Okay. I don't think mom ever really intended to get married, but Well, my father was. Quite nice, and she decided that they could go overseas after they'd finished uni or teaching for a while or something. And he said, Oh, I thought maybe we could get married. And she said, Oh yeah, okay, fine. They got married and went overseas. Aren't people
Speaker 1 25:17
funny? Like, you know, like Boys, boys are like that, one's pretty, and girls are like that. One's Nice. That's good, pleasant. Yeah,
Unknown Speaker 25:28
he's a lovely chap.
Speaker 1 25:30
Is he doesn't care too much about football. No, see, that's what she told that's what she liked, that
Ally 25:36
that was the thing. That was the thing. He didn't care about football at
Speaker 1 25:41
time it time to look, talk to her and do things. Yeah, she's like, okay, that makes sense. Okay, so, okay. So hilarious. I love hearing about people's lives, although, um, it makes me sad when you're talking about the MDI and the lows, because it really does make me feel it does. It really does make me think about Mike, and it's so interesting just to hear you have, like, a good role, and back to it being lucky and then, and for some people, it just doesn't go well, like, yeah. So I think that's what stuck in people's minds when they're parenting, right? Like, is, yeah. Like, your mom, listen, your mom had the luxury of ignorance, meaning that they didn't really know a ton about this. You were, you know, shoot this in the morning and the night, you know, 30 carbs here, 30 here, you know, look, look, she's still alive. We're doing it like that. Was it? Yeah, yeah. And,
Ally 26:29
look, I was pretty self caring pretty early. I didn't want a whole lot of input from them. Do you
Speaker 1 26:36
think if you were counting carbs, changing CGM and setting up algorithms.
Ally 26:42
It would be different. Yeah, it would be different and more difficult. But you know what, I'd still probably want to have a bit more autonomy over things, then maybe some kids are allowed, I don't know.
Speaker 1 26:56
See I appreciate your story and others like it that I've heard, and I think it's awesome like that. It went that way for you. But I think it's after speaking to so many people, like, there's a mix of things that I don't even know, that people appreciate while they're living in it, right? Like your personality, your mom's personality, your physiology, how you, you know how you I don't know handled being low that you didn't you weren't scared to go off by yourself, like all those things that make you you turn this out this way?
Ally 27:25
Yeah, they're not typical of everybody. Are they exactly right? And
Speaker 1 27:29
so then what do you do when your kid's six, and now you have all this data, and you understand exactly what's going on and what could happen, and you think, Well, I'm going to try to set this person up for the best possible outcome, yeah? But then the other side of it ends up being the part that you're that you're also talking about, which is just sort of like the Yeah, mental
Ally 27:52
side. Can't stay overnight anywhere, right by the kid's self, you know, kid can't go in school camp. Yeah, right.
Speaker 1 27:59
Can't do it well, any Well, yeah. And then then I think it feels like your actions are the reason things are okay. Tarzan is a, is a, is an interesting story. They, uh, dropped that kid in the jungle and it was still alive. Yeah, you start getting into that feeling of like, well, I did this, and things are okay, so I'm keeping things going right? Like, I think that's the fallacy, you know what? I mean, yeah,
Ally 28:24
yeah, yeah. I mean they're just back then there just wasn't that option to to have that much worry about things, because we're talking no finger sticks for the first couple of years. Yeah,
Speaker 2 28:37
you wouldn't have even known what to be worried about. No, we didn't know, and it worked out for you. Yeah, yeah. That's awesome, by the way, congratulations. That's very cool.
Ally 28:49
I could also tell what my glucose was fairly easily. And I know,
Speaker 1 28:54
wait a minute, not one of those, you think you know what your blood sugar is by how you feel. Well,
Ally 28:59
it kind of worked out. Yep, it kind of worked out. We had competitions at the kids camps about who could guess their glucose the closest. Okay, before finger sticking right, and it was to try and convince us that it didn't work. Guessing didn't work.
Scott Benner 29:17
You kept getting it right. Oh, I won
Ally 29:20
so many bottles of freaking shampoo because that was the price
Speaker 1 29:25
ally, you know, they would have given you that shampoo anyway, right? Like, they didn't want you dirt. No,
Ally 29:30
I had, I'd like, six bottles of it, and I'm like, do you want to share it around guys? You know?
Speaker 1 29:35
Hey, listen, I made my living in school on stuff like that. So, like, the teachers would say things like, I once passed an entire half of a year of science because I knew the first Mickey Mouse movie was called Steamboat Willie, because the teacher had thought that they had this piece of like, inane trivia that nobody would know. And he makes this big pronouncement if anybody knows. Was the name of the first Mickey Mouse movie. I'll give you 100 extra points, and then you could use those points in the way you wanted. So what I would do is I would get a bad grade on a on a test, and then move some of my extra points over, or not, do my homework, and then move over the but so I worked, like, like, those extra points were a savings account for me, and, you know, so he's trying to be like, funny. Like, you know, I'll tell the kids something they don't know. But it worked. I popped my hand up, and I was like, steamboat, Willie. And he looked at me like, Hey, what the so I took my points. I walked up to the boat, I walked up to his book, and I was like, I want to see him. Put him in there, and he put them all in and I lived off them for the last half of the year, perfect. Yeah, I didn't just that rest of that year, but I see what you're saying. Like, you Yeah, they're trying to Yeah. They
Ally 30:49
were trying to prove the opposite. And I'm like, it actually kind of works for quite a few of us. You know, some people
Speaker 1 30:55
can tell you, think, yeah, at least you could. Does that still bear out? Now, can you still, Oh, yeah. Like, if I said to you, right now, what's your blood sugar, you think you would know it? Yeah, no kidding, all
Ally 31:06
right. Well, yeah, yeah, I can tell if I get above, you know, 910, millimol, okay, without looking, I mean, because, you know, obviously one uses CGM now, but yeah, and I pick lows coming on pretty early, earlier than CGM does.
Speaker 1 31:23
We're adjusting Arden's insulin right now. I She's doing something. She's using ovacetol Every day. Oh, okay, just a supplement that helps people with like PCOS and women with insulin resistance, stuff like that. And so she'd been using it for a while. It was really helping her, but then they just got away from her. And I got her back home, and I was like, Look, I really think this is a thing you're missing. So as she's been back on it now, she's not micro dosing a GLP, but she's, we're underdosing it, meaning she doesn't get the whole pin once a week. And then this, this ovacet Every day, her insulin sensitivity. I just moved it last night to 110 one unit moves, or 110 Yep. That number had been like in the early like maybe 43 at one point, yeah. And now it's 110 her basal rates are down almost a half a unit an hour. So she clearly has implications from from, you know, from hormones or PCOS or
Ally 32:32
something, yeah, yeah. And she's a young, fertile woman. She is,
Speaker 1 32:36
I assume, yeah. Well, the two of us together, we're adjusting our insulin down and down and down. And so we did it again last night, and we did it after the meal, right? So I guess we all expected her to get a little low still after the meal. But to your point, I'm leaning on the counter doing something in the kitchen. She walks over, opens up a candy dish, takes out a piece of candy, starts eating it. I don't really think anything of it. And I swear to you, 10 seconds later, beep, beep, beep, beep, beep, she talks to her phone, and she goes, I know that's why I'm getting the candy. And so, yeah, yeah. So she felt it before the CGM did, yeah,
Ally 33:16
yeah. Shut up. I know I've dealt with it. That is something we all say, I
Speaker 1 33:23
got it. I got it. The timing was just so perfect, because she had just kind of put the candy in her mouth, then it beeped, and she was like, Oh my God. I think she felt good about it. I think she felt like, Yeah, I'm ahead of this. Yeah, you know. But you had that thought done, Yep, yeah. What's the best thing that's happened to you about diabetes management wise, like, what's been the single most impactful thing looping 100% more so than just getting a CGM, they basically
Ally 33:51
went together. I didn't I wasn't particularly interested in CGM when I had to have alerts and alarms. I don't like them. I don't need them. They irritate the crap out of me. So when libre came to Australia, I was like, Oh no, noises. Let me add it. So I got a libre and loved it. And then I decided to use spike, you know the DIY app for iPhone. I remember that, yeah, to read the libre with. I think I had a blue con to put over it, or something like that, or a meow, meow,
Speaker 1 34:33
Alex, let's tell people what we're talking about, just in case it gets away from so when the first libre came out, you had to scan it to get the number. It wasn't giving you a constant number on your phone. No, as a matter of fact, they were calling it a CGM, and people were like, what's not continuous?
Ally 34:48
No, it's not a CGM flash glucose monitor.
Speaker 2 34:51
Yes, but that's what you liked about it. Yes, okay, it
Ally 34:55
didn't make noises, okay? And then I could have more or less continue. Was data if I scan. But I was just a little bit curious. I don't dislike tech at all. So I read about, I think it was a Facebook group or something, and I had a blue con. I thought, Well, I'll see what happens with this spike app. And in the spike app, there was some information about if looping into the following, you know, change the following bit of information. And I'm like, What the hell is looping?
Speaker 1 35:34
Okay? Just like that. That's where, just like your friend told you about MDI almost,
Ally 35:39
yeah, yeah. I was like, Well, I think I need to know more about this. That led me further down the loop pathway. I'm like, oh,
Speaker 1 35:48
oh, I love that. You went from I don't want this thing beeping to I think I could automate this entire system,
Unknown Speaker 35:54
yeah, yeah. And that that happened in about a week. Not a lot
Scott Benner 35:57
of conviction to that I don't want this thing beeping
Ally 36:01
not but I could turn all the alarms off, right? No, I know, yeah, I still didn't want to beep it. Okay, so I need night Scout, right? Let's set that up. Set that up in an afternoon. That was easy back then, it's not so much now, right? I'm gonna build this, build this loop app, and then I was working away at the time, I had a fly in, fly out job in a different state, and I flew home. And then I thought, I wonder if I've got one of these compatible pumps, one of these old pumps. And it turned out I'd had it in my bag the entire time anyway, because it was my backup pump. I had an old Medtronic, 754, okay? And I'm like, Oh, but I need a Riley link. So got a Riley link, and then we're all
Speaker 1 36:48
good. It's funny. I bet you, most people don't even know those words anymore. I know,
Ally 36:52
I know we're talking a while ago, but it's not that long ago. It's only six, seven years.
Speaker 1 36:58
Not at all, not at all, but yeah, but when the DIY systems first came out, you had a very specific couple of pumps that would work with it, and the pump couldn't actually talk to the app on your phone, so you had to have this link in between, which was this, just like a Raspberry Pi, like it's just a little and those are even probably words people barely know. But there was a thing you bought online from a guy he made them, and there was eventually a group of people making them, because there was a call for them, and they'd pump these things out to you, and it would let your phone talk to the link and the link to the pump and vice versa. Yeah, it's awesome. And
Ally 37:34
you know what I had dinner with, alas, just on Saturday night, and she's still using an orange link with her loop setup. The
Speaker 1 37:44
friend of yours is still doing it, yeah? Nice. It's nice that it works. Yeah, you know, yeah,
Ally 37:50
it does, yeah. And that, honestly, that was just like, that was mind blowing, and it put me in contact with people with a lot of knowledge and a lot of ideas and a lot of really good common sense, that was mind blowing.
Speaker 1 38:09
Yeah, it's wonderful. How many people are out there doing stuff like that? Yeah, really is I
Ally 38:14
didn't actually change my HBA 1c much by looping,
Speaker 1 38:17
because you were already doing pretty well, or because it wasn't working that way. Well,
Ally 38:22
I was already low, like, it was quite low. And, yeah, I was doing fine, but it made life easier, yeah, so much easier.
Scott Benner 38:32
Sleep, right? Sleeping overnight,
Ally 38:33
yeah, not having to, you know, think, Oh, crap. I, you know, forgot to Bolus for X, Y and Z, you know? Oh, look, you know, the algorithms actually taken pretty good care of that. And, yeah,
Speaker 1 38:47
yeah, no, I mean the difference between forgetting to Bolus on a, like, a dumb pump, like you said, or on an algorithm. Honestly, it's the difference between, like, a 202 20 blood sugar and a 400 blood sugar.
Ally 38:59
Yeah, yeah. It's pretty awesome. It's amazing. And I don't even get that high. I maybe get to 180 Yeah, maybe 200 I am fairly freakishly sensitive to insulin. You said Arden's was 110 Yeah, Yeah, mine's closer to 180
Speaker 1 39:18
Wow, yeah. Are you very tall? How much do you weigh? Like I
Ally 39:23
am a short, stocky little Muppet, yeah, but I'm also very active. And, yeah, I'm five foot, nothing, and you'd want pounds, wouldn't you? Maybe 150 pounds.
Speaker 1 39:38
Okay, Ali, can I call the episode active Muppet, yeah, why not? Okay,
Ally 39:44
like, you know, I, I mean, for instance, tonight, I finished work, went to two hours of ballet classes. Came home, ate dinner, and yeah,
Speaker 2 39:53
oh, you went your ballet classes. Yeah, that's a
Ally 39:57
couple of hours of ballet classes. I've got three tomorrow night. Three hours.
Speaker 1 40:00
You do it for the dancing or do it for the exercise? I honestly
Ally 40:04
it's for the exercise. Yeah, I'm not a ballerina, but I love the technical nature of it.
Speaker 1 40:11
Excellent. Now we're going to call the episode not a ballerina. Yeah, tell me you have a list here of you're talking about. Let me see what you said here, the disaster that is having type one and trying to access good general health care without people making dangerous assumptions that everything is related to your diabetes, hospital nightmares. What has gone on over the years?
Ally 40:31
Oh, well, I have actually been quite lucky in terms of that sort of thing, but I hear so many horror stories. For instance, young woman goes into hospital for an elective semi cosmetic thing, like a vein stripping. For instance, they take her pump off because that's policy, and don't replace it with anything. Oh, yeah, major public hospital is somebody
Speaker 2 41:03
you know this happened to, Yep, yeah, were they okay?
Ally 41:10
Yeah, she got out, but they wouldn't even bring her her pump
Speaker 1 41:14
back. So do you think they just didn't understand that she had type one? Yeah?
Ally 41:17
They don't. They don't. Once you hit 18, they don't get it,
Scott Benner 41:21
yeah, I guess so, right? Everybody's Yeah,
Unknown Speaker 41:25
oh, you're not eating, you'll be okay. And
Speaker 1 41:27
we don't want this pump on you, because it'll make you low because you're not eating, yeah, yeah.
Ally 41:31
I say they don't understand it. And there's no real sort of oversight in certainly in public hospitals, if you're going in for, say, orthopedic surgery, or, you know, gastrointestinal surgery, the endocrinology team doesn't necessarily get involved. Okay, really, yeah, yeah. They don't, you know, say, if it's a day surgery, oh, wait, in and out. Yeah, in and out, I think, but there's a lot people can stuff up in, you know, five, six hours, sure, you know, I could
Speaker 1 42:05
go wrong. Yeah, no, and, but you've been okay, like, have you been in the hospital and you've just managed it on your own or, yeah?
Ally 42:12
But the only situations I've had around, you know, injuries and orthopedic stuff, okay, I've been very, very healthy, you know, fairly blessed sort of life, yeah, but, yeah, I'm a bit injury pride, then I break things and need to have things put back together. Ali,
Speaker 1 42:35
is this a cry for help, or do you actually get hurt a lot? What's happening? No one's hurting
Ally 42:39
you, right? Martial arts, gymnastics, you know, no kidding, that sort of thing. It's awesome.
Speaker 1 42:44
You know what? You're making not being married sound really attractive to people. It's fantastic.
Unknown Speaker 42:54
It's the best farm. So,
Speaker 1 42:56
you know what I really want to, I'd like to, like talk to you about some more, is that everything you put on your list about that wanting to talk about is stuff that you're worried about for other people. Yeah, you're like, I'm okay,
Ally 43:10
yeah, I am. I legit am. I'm cool, yeah.
Speaker 1 43:14
So is it fair to say that, like your message to people is that try to let it be okay, yeah. And if it is, then great. And if it needs more attention, then give it more attention.
Ally 43:28
Yeah. A lot of people talk about fighting and being a warrior and all of that sort of stuff. I don't actually think diabetes works like that. You kind of got to go with it.
Speaker 1 43:40
I do agree. It's a lot about being flexible, yeah, not not fighting it, but like, yeah, being a part of just responding
Ally 43:48
to it. You know, it's sort of more like a dance than a fight.
Speaker 1 43:52
Yeah? If we're gonna go on with your analogy, I like the idea of it being a dance that you're leading.
Ally 43:59
Yeah, yes, yes. You gotta lead. You've got to tell it where to go. But if you're constantly uptight about it, well, you know that's going to shoot your cortisol up and, you know, mess with things. No, of course,
Speaker 1 44:13
you're not unfeeling for the idea that some people just have anxiety or are more kind of prone to worrying, but,
Ally 44:21
yeah, I don't understand it, but I get it. I mean, no, I don't get I get people are different, yeah?
Speaker 1 44:29
No, I listen. I'm right there with you. I try people. If you listen to this, you hear me. I'm trying very hard to understand that other people that are different than I am, yeah? But yeah, it's one that I have just a hard time wrapping my head around in my personal life, or, you know, here on the podcast, or anything like that. Just it sucks to have a thing impacting you that you don't want that's, you know, not a decision you made, but you also, you think you have a little ADHD,
Ally 44:52
oh yeah, yeah. Not diagnosed, not formally, but I've been repeatedly told. I've
Speaker 1 44:59
been repeated. Totally cold. Yeah. Do you have any other autoimmune issues besides type one? I have psoriatic
Ally 45:04
arthritis, probably off and on since childhood, but it really hit home when I was in my mid 30s. Where do you feel at the most? Hands and feet, mostly. But then, you know, I'll get focuses of, you know, a tendinopathy in the shoulder or something like that.
Scott Benner 45:23
It's a come and go, Yeah,
Ally 45:26
but it comes and it stays for months. It's troublesome. Needs steroid shots occasionally, which is, you know, bit of a disaster glucose wise. But, you know, it can be dealt with. I take biologics for it, which I think has kept me pretty comfortable and active. Which one I take xeljan. It's a Janus kinase inhibitor, yeah.
Speaker 1 45:51
How long you've been doing that? Probably 10 plus years. Okay? And if they're helping you, you haven't had to change meds or anything like that.
Ally 45:58
I have not. That's awesome. No, I'm pretty lucky, like the first one I tried, the first biologic I tried. I'm like, Oh, this is a miracle. Yep. Cool.
Speaker 1 46:06
So your wrists, hands, feet, like, ankles, like that, yep. And then sometimes your shoulder feels like, what shoulder or
Ally 46:16
hip or I've even had knee tendinopathy, which is weird. You know, how'd you get your diagnosis? I came back from a trip to South Africa on a flight, and I'd felt perfectly fine when I hopped on the flight, and when I went to disembark, I couldn't hold my suitcase. My hands were so fat and red and swollen, I thought, Oh, it must just be a reaction to the anti malarial tablets or, you know, whatever. But it didn't go away for months. And I was working in a fairly technical job at the time, and it was quite problematic. And so eventually I saw a rheumatologist, and he looked at my hands and went, Yeah, you've got psoriatic arthritis. Cheers. Take these. Wow,
Scott Benner 47:05
geez. How quickly did it take the medication to work?
Ally 47:08
Well, initially I didn't need a biologic. I just used a disease modifying anti rheumatic drugs, hydroxychloroquine and sulfasalazine, and got a fairly quick remission, so about two months, okay, yeah, and that, that was really good, and then I stayed pretty good for 10 years. And then I broke a finger and needed surgery, and that set everything off again. Do
Speaker 2 47:33
you get the psoriasis as well? No, no, no. Well, maybe,
Ally 47:38
maybe a little patch on my left elbow maybe. Okay, it's not convincing.
Scott Benner 47:45
Sorry. Do you get any fatigue from it?
Ally 47:48
Then I, I, you know, I get tired because I do far too many things and don't sleep that well, um, how long have
Speaker 1 47:57
you not been sleeping? Yeah, wait. Have you not slept well your whole life? Or is this like a perimenopause thing or not a good sleeper? Not a good sleeper. I'm such an awesome sleeper. I'm bragging. Now, I just close my eyes and I go right to sleep.
Ally 48:12
Oh, I wish. Oh yeah,
Speaker 1 48:16
I'm awake right now. Ally, I mean, I know it's late where you are, it's early where I am, right? And I'm awake now. I'm ready for the day. I'm fully, fully energized. I have no, no problem at all. If I lay down right now and thoughtfully tried to go to sleep, I could be asleep in four minutes. Oh, that's
Ally 48:33
irritating. I'm sorry. I know it is. No, no. It takes me an hour, you know, three chapters of a novel, some YouTube clips, three changes of position. Yeah, I
Speaker 1 48:44
know. I watched my wife try to go to sleep. Don't worry. Yeah, I'm just like, I know. I know it pisses her off, but I'm like, Look, I tried to sit up with you for a while, but this is it. Now. I'm going to sleep now. And I'm like, Yes, anywhere, anytime, just let me know where you need me to fall asleep. I'll fall asleep if you if you bet me money, I could probably fall asleep while driving, if I tried hard enough. Oh, oh dear, not like I would just pass out while driving. I'm just saying that if you said to me, Look, there was the opportunity. We'll catch the car. Nothing will happen. But go ahead, like, with the pressure of driving the car, like, could you fall asleep? I probably could. Oh, gosh, yeah, I wish. I'm so sorry for you. That sucks. I'm glad you found the the biologic zones, they're helping because, I mean, otherwise, even, like, early on, hydroxychloroquine, that's a great drug for Yeah, it was like this, yeah. So there's a couple, a couple of drugs that have been around a good long time that help with things like that, that are cheap and easy to get everything like that. Yeah,
Unknown Speaker 49:41
the biologics are not cheap.
Scott Benner 49:44
No, no, no, no,
Unknown Speaker 49:47
jump through, but yeah,
Speaker 1 49:49
how does the health care system there work? Like is that on you to pay for it? No.
Ally 49:53
If one's rheumatologist fills in the correct paperwork every six months or so. I. Just pay a normal prescription price, which is 30 Australian dollars per month. Awesome. Yeah, so it's but, yeah, we're pretty lucky. Here we we have so much access to insulin. It's not funny. I feel so sorry for your Americans with the health insurance and, you know, not getting things written out properly. So people are running short and, oh yeah, it's dreadful. It
Speaker 1 50:24
sucks, for sure, anybody who's impacted by it, it's just an extra struggle, an extra thing, an extra thing to worry about. And, like, I often wonder, like, when you see people worried about their kids, like that, if it's not part of that too, like, like, we got to take really good care of you and teach you what to do. Because, you know, you also have to learn how to, like, navigate the healthcare system, and you're gonna have to get a job with insurance and, you know, yep,
Ally 50:48
yep, everything, yeah, yeah, such a pressure. Yeah. I
Speaker 1 50:53
want to tell you I think that it's really great to hear you talk long form, because if you see the conversations that we started off talking about online, where somebody's like, look, you know, I just, like, trying to get across, like, just chill out a little bit. Someone's gonna be like, you know, like, go to hell. And then like, you know, like, you're gonna
Ally 51:13
get my precious, sacred little, little puppet, you know, needs my constant attention because they're special.
Speaker 1 51:19
It also doesn't help that you don't have kids and you're an only child when you're talking about
Unknown Speaker 51:28
it, what would I know your
Speaker 1 51:29
kids not that special, but the people listening are thinking, Well, yes, they are, and they're right. They are special. They're I know, yeah, but it's just an interesting like that conversation becomes very contentious. It's predictable by me, because I've seen it. I've seen it so many times and and I understand it from both perspectives, like I want adults to hear what the parents are saying, and I want the parents to hear what the adults are saying, because there's so much value in both of you being in the same group, like so many people, what do I get all the time? There's no adults in here. It's only parents. And I'm like, No, there's a lot of adults in here. They don't talk as much as the parents do. No, I right. And then, you know, when you hear someone come in and leave good advice behind, it's always valuable. Somebody eventually becomes flippant. If somebody eventually becomes flippant, that's not a good path. But I also think that there are plenty of adults who give their advice, and sometimes the parents want to be offended by it. I don't know, like that's a weird
Ally 52:37
way to say it, but their little puppet is sacred and precious. Wait, wait, well, you you
Speaker 1 52:42
feel like you're you're on the moral high ground. I guess while you're having the conversation like I'm just trying to protect the kid, yeah? Which is, yeah, not invalid. I'm not saying that. I also think it works backwards, back and forth, too, because I see a lot of adults who will say, There's nothing here for me. It's just parents talking, except there's a ton to take from that. Yeah, because you guys are older, you live through a different time. You don't have the same focuses, or maybe even the same understanding of it that somebody who's just been dropped into it does. And then on top of that, someone who's just been dropped into it that feels the pull of taking care of their kids, they might have a very specific understanding of something. And if you can get past the argument, like, though they're a kid and I'm an adult, so it's not the same. It is the same. It's how insulin works. Yeah, yeah, the advice is always the same. It works for anybody. You take the nature of insulin and the way diabetes is from someone else's perspective, listen to their perspective, and then try to see how much of it is valuable for you. And that works both ways.
Ally 53:45
Yeah, you know, yeah, because insulin is insulin, exactly.
Speaker 1 53:49
But everybody gets whole like not everybody. Actually, it's not everybody. It's hardly everybody. It's barely every anybody. It's but when it's a couple of voices in a conversation, it feels like everybody. I always try to remind people, like somebody said to me the other day, this group is whatever they say like this. And I say to them, there are 125 new posts every day in here, 8000 comments and likes every 24 hours, 57,000 people as of right now. You saw two people arguing, and you think this is a place where everybody's mean, I don't understand your your logic, like, isn't this a place where 57,000 people are nice and these two people are nudniks? Isn't that and isn't that great, you know? And by the way, too, Ally, those two people aren't even nudniks, because if you got them on the right day and talk to them the right way, like you'd realize they're nice people too, yeah, if
Ally 54:43
they'd had enough sleep because kid wasn't hypo in constantly overnight, yes, you know, yeah,
Speaker 1 54:49
right, right. If they had enough sleep, if it hadn't been a month since they had sex, if it hadn't been like, also, by the way, like as a moderator of a Facebook group, the thing. I hold in more often than not, is, like, you guys should just go get laid and come back. Everybody's got to Calm the down and, like, you know, like, just, just chill. Or, by the way, like, drink o'clock comes up and then everybody wants to talk about their stuff. I'm, like, not a drink o'clock. Don't do that. No, we'll start talking about diabetes with a beer in your hand, you're all going to be shitty. Like, like, just relax a little bit,
Ally 55:23
go and have a quick share, like, a bomb, come back, and they'll all be better,
Speaker 1 55:29
yeah, and you'll realize you know stuff that they don't know, and they know stuff that you don't know, and we'll all be okay. Like, seriously, I swear to you. Like, that's it. There's times that I put this some quote from an episode of mash, which is ridiculous, but it's this line in a TV show from the 70s where this guy, like he just sees everybody upset. They're all having a bad time. And he's a psychiatrist that comes in and out of the camp sometimes, and he stops, oh, yeah, yeah, Sydney, Sydney. And he stops on his way out one day, and he says, Ladies and Gentlemen, take my advice. Pull down your pants and slide on the ice, and then he just walks away. Right? I half completely understand what that means, and I half don't know what the hell he's talking about, but it's perfect advice while you're all upset, just go do the thing you do that chills you out right now. Why is arguing with each other the way to go? And again, I want to say for people listening, it is very infrequent. I've done a couple of things right in my lifetime. Not a ton. Not a ton. The way I have that Facebook group set up, I'm proud of it works really well. And there's going to be times like that. It that a couple of people fire shots and people and some people get caught by shrapnel. You know what I mean? Like, but like to to extend this Korean War metaphor for the most part, it's a really lovely place, yeah. And I just want to remind everybody that, if you're only seeing people arguing, the algorithm is feeding you what you're interested in Oh, so, yeah, that's it. Ali, have you ever heard people say, How did the algorithm figure out I was gay before I knew? Have you ever heard someone say that? Yeah. So there are. It's a phenomenon on the internet where people are shown by the algorithm that they have a tendency in one way or the other that they didn't even realize.
Ally 57:21
Well, I wondered about that a couple of years ago, I kept getting advertisements for lesbian or, you know, gender fluid trousers, and I'm like, they're horrible. I don't want those. They're really ugly trousers. Why would I want those? It turns out, I was involved in a project to make bag pipes out of carbon fiber tubing. It was a short lived project, but I was Googling a lot of tools,
Speaker 1 57:54
a lot of what Tell me again, tools, tools, like tools. Oh, my God. So you think the algorithm saw a female your age looking for, like, looking for tools, hand tools, and thought,
Ally 58:07
obviously, I need extremely ugly trousers. I want
Speaker 1 58:11
to say that some people probably think those trousers are lovely, but, um, but either, no, that's exactly what I'm talking about. Like, yeah, that algorithm figures out what you care about before you know it, what it is, and it makes assumptions that it can be wrong about as well. Like, don't get me wrong, right? But at the same time, if you're seeing a lot of people fighting online, that means that you are pausing, reading and interacting with people fighting online, and that's the algorithm telling you, whether you know it or not, you like this. You like the drama. I'll share this with you, yeah, very quietly, in case people are listening. Ali, okay, my wife's family are more comfortable when they're fighting, oh, and they're more comfortable when one of them is the bad guy? Oh, they pass the bad guy thing around, and they don't know it. Oh, they take it in turns. Yeah, they don't realize it, but they don't So, and it gets to be one of them for a while, yep. Then that's that's not fun anymore, or whatever, or it calms down, so they give it off to someone else, yeah. And then sometimes, sometimes they get lucky, and one of them actually does something shitty. And then, though they get it, they are the most comfortable when that is happening. If things, I will tell you this, it took me, if my wife heard me put it like this, she would definitely smack me in the head. But it took me decades to get this out of my wife, but she was more comfortable when there was a problem than when things were good. Oh, gosh, yeah, not terrible. The algorithm knows that about you, yeah? And it feeds you the three people that are arguing tonight in my group. And then you go, this place is just people arguing all the time. And I'm like, turns out you're just attracted to it. Yeah. Yeah, yeah, because I see the whole group alley, and the group is people being lovely to people all the time, yeah, with a couple of people arguing. So anyway, by the way, in my moderating style is getting to, it's starting to, like, slide into my parenting style, like last night,
Unknown Speaker 1:00:15
it's a big family. There's this
Speaker 1 1:00:17
lovely woman. I know she's lovely. I see How lovely she is, but she's going through something right now. Oh, okay, every time she gets into something, she gets offended and starts arguing and yelling at people. And I've tried to moderate anybody through it, but last night, puts up a post that could be just a regular, lovely post asking for advice, and then people give their advice, and then she yells at them and tells them they're wrong. And I'm like, Hey, don't go on the internet and ask people for advice, if what you want is for people to agree with you, okay? And yeah, you might have said something that they don't agree with. And these people, I read through everything they were they saw her as needing help. They gave really thoughtful responses. Nobody was being mean to her. She fired back. Fired back, but it was late at night. I deleted the entire thread and sent a note to the person that says, I hope you're okay. I don't know what's going on, but you have to stop wanting to fight with people. And I just, I just, I can't do this. I gotta sleep too. Ali, you know what I mean? Yeah. Anyway, oh gosh. I think everyone who moderates a Facebook group thoughtfully should be brought together. They could probably fix every problem. They probably know everything that's going to happen before
Ally 1:01:32
it happens. Yep, peace in Gaza get the Ukraine situation sorted out. I would
Speaker 1 1:01:37
have saw it coming six months before it happened. I would have been like that one said that this one responded this way. It must be Thanksgiving. That's, by the way, how it works. Like everyone starts to lose their mind right before Thanksgiving. Oh, okay. And then it travels through into Christmas. They happy up for eight seconds around Christmas, and then
Ally 1:01:59
it and then tails off again at New Year, yep, decompensates, yep, yep.
Speaker 1 1:02:03
And then now, January is almost over, and everyone's coming out of their their haze now and then, yeah, and everybody be a little quiet. February, March, spring will come, and then everybody's as happy as can be, right until they realize their kids are going to stop going to school, and then,
Unknown Speaker 1:02:24
and they've got a whole summer of to deal with.
Speaker 1 1:02:27
Then it gets a little off kilter. But then a lot of people go into like, I don't even know how to put it, the summertime, they just they go away in their heads. They give it away, if that makes sense, yep, and then they're great through the summer, even the fall. People love the fall, but when they sniff Thanksgiving,
Ally 1:02:49
that's when it happens again. That's late November, isn't it? Yep, yeah, we don't have that here.
Speaker 1 1:02:55
No, you're lucky, because all you get is Turkey and potatoes and anxiety, apparently, I don't know, but, like, Yeah, I know how people are going to act in a group based on the time of year. Oh, okay, it's really interesting. So, and it's consistent, because I've been doing it for so long now. Like, it just happens. So we get ahead of it, like, we try to, like, move people in a better direction, give them, like, happier things to look at, like, like, the whole thing, it's really purposeful. So,
Ally 1:03:23
yeah, look, puppies, kittens. Oh yeah, I'm trying to
Speaker 1 1:03:27
help you guys fight against your inner demons, or whatever it is that we've, um, you're a maybe personal human algorithm. Maybe, I don't know. Yeah, anyway, anything, we didn't talk about what people are, weird people are, yeah. Look, I can look at it that way. There are times I do. There are times that I'll just, I'll be like, Man, what is wrong with that person? Just like, yeah. But then when you really look and you see it is what you talked about, there's a reason. There's a reason. Yeah, I'm gonna go out on a limb here and say, I don't think there are bad people. I just think there are people that are in so many different bad circumstances that the only reaction, reaction that's left is the one they're having, yeah,
Ally 1:04:08
yeah, you know. And that's just to strike back.
Speaker 1 1:04:11
I think so like i because I've seen really terrible things, and I've seen lesser versions of it. I don't know what I am. Am I a pacifist? Is that possible? Because I look, when I look at them from from 100 yards, you know, when I step way back, I don't see bad people. I just see people in some version of hell and, yeah, this is what they're doing to get through it. Yeah, I don't know it's, it's something anyway, all right. Well, Ally, you've had a great life. I have, I hope it continues. I also think it's interesting, by the way that I didn't even think to pick through if you had anything else going on because of your attitude, because you have such a good attitude about having diabetes. But you know, arthritis is no
Ally 1:04:57
like, this is like. I think I prefer that I have diabetes maybe, than somebody else, really, because I'm okay with it. I mean, it's not fun. Sure, I'd love to get rid of it, but I guess I've been blessed with the physiology and genetics to be able to deal with it reasonably well.
Speaker 1 1:05:19
Yeah, no, I I've come to believe that too, like some people just get a better mix.
Ally 1:05:25
Yeah, yeah. And my parents are and grandparents are ridiculously long lived. So, you know, yeah, I mean, my father is 81 and still working. Do
Speaker 1 1:05:37
you worry about being older with type one? Oh, yeah,
Ally 1:05:41
yeah, yeah, yeah, my friends and I talk about this a bit like, we really need to set up nursing homes, retirement homes specifically for type ones with sensible carers. Yeah, that's a good idea, because that's scary. I
Speaker 1 1:05:58
take your vibe right away, like you're not going to be able to spread enough knowledgeable people around to all the places. So
Ally 1:06:05
no, we're not. We need to consolidate. Yeah, I've one of my school friends has a mom. She's now in her mid 80s, and she developed type one when she was in her late teens. Okay, she's in a nursing home now, because she's physically very frail, but thankfully, she's still able to self care good, yeah, so she's got a pump and a CGM and all of that, but if she had Alzheimer's, no
Speaker 1 1:06:33
now, they put her on a they probably, they probably put her on once a day, yeah, just basal and then let her drift away at her time. This is a thing that a lot of people around me, even privately talk about all the time, like, I don't just, I don't mean personally even like just people, you know, we're always thinking about ways to help people with type one, and, yeah, it's a big concern about people getting older and not being able to see their pumps like pump companies. No pump company puts any effort into a pump that an older person can use easily.
Ally 1:07:03
No, right? No, because, yeah, where's the market? Old people aren't sexy,
Speaker 1 1:07:08
right? And they and they're also not a long live the market. No, either. Yeah. That's why you don't see any cars marketed towards 75 year old people like, yeah, they drive three miles a week, and that's only going to be for another month and a half. Well, that's where the sexiness is, then, is in the home for people with type one. Yeah, right, plenty of people with diabetes, like, why not make a diabetes specific place to help them? Yeah,
Ally 1:07:33
yeah, you know, get sensible carers and, you know, yeah. And you could even extend that into maybe daycare. How do you mean, like, you know, for little kids?
Scott Benner 1:07:46
Oh, yeah. Well, you gotta have enough of them too. You gotta
Ally 1:07:48
Yeah, yeah, right. And that, that could be tricky, but yeah, um, certainly, where I live, there's probably not the population density. Yeah, I live in a capital city, but it's still only a million people.
Speaker 1 1:08:00
Can you imagine the beeping 20 minutes after snack time at a type one daycare? God, yeah, lot of beeping. Hey, can I ask one last question before I let you go? Sure. Do you like me? Like, how do you know about this? How
Ally 1:08:13
do I know about the podcast and all that I first heard about it when I was knee deep in loop territory. Okay? And I didn't really have time then, but then I worked out what podcasts actually were, and started listening. And then I found the Facebook page,
Speaker 1 1:08:36
okay, I've drug A lot of people into listening to podcasts that I don't think ever would.
Unknown Speaker 1:08:40
I didn't know what a bloody podcast was. But,
Speaker 1 1:08:43
I mean, like, I don't have type one. Why is that okay with you? You've got sensible
Ally 1:08:47
advice. Okay? And look, I mean, to be honest, I haven't been through all the, you know, the technical series. Oh, you like the stories. I like stories, yeah, because I've kind of, I've kind of done the technical stuff, I've kind of figured it out. That's not to say there's nothing to learn that I you know. No,
Speaker 1 1:09:09
no, I understand. But yeah, it just, it doesn't feel like a focus for you right now.
Ally 1:09:13
No, no. Awesome. I I love people's stories. Yeah, that's
Speaker 1 1:09:17
awesome. Well, yours was great. I appreciate you adding it. Oh,
Ally 1:09:21
thank you. I look. I just hope I can reassure some of the parents that are really struggling out there that their kid is probably going to have a really good life. Yeah,
Speaker 1 1:09:32
it's funny. The way you put that is exactly how I would say it, like, don't worry too much. It's probably going to be okay.
Ally 1:09:38
Yeah, yeah. I mean, the thing is, we can't predict the future. We don't know what society is going to be like in 20 years. Do we?
Speaker 1 1:09:48
Well, yeah, that's a good point. Like, because, yeah, because, like, using as an example, like, I put up an episode today with this guy using the eyelet pump. Yeah, and he's doing really well. Yeah. Think, you know, doing really well, saying normal meal, smaller than normal, larger than normal. I also put up an episode with that same comp of the company, like, a week before, yeah, I listened to that one, yeah, and I pushed, like, I pushed a little bit. I was like, Are you guys going to keep trying to make this better? Because, yeah, I think you should. And I think it would be a big deal. You know what I mean? Like, if you, if you kept pressing and and you figured out a way to make this better and let AI, you know, like, help you, like, expand it more quickly. Yep, you're not wrong. Like, you could wake up. I hate saying this, because I know people, poor people with diabetes, been told it's going to be cured forever. I don't mean cured, but I mean No, no, of course not. If you look at the sheer number of things that humanity can't figure out. Yeah, you think we're gonna leap over how to not argue on the internet and get right to curing diabetes? Yep, yep, that's it. Yeah, you're all lucky that it's going this well. But my point is, is that if you don't think that five years from now, all these pumps might not be making insanely accurate insulin decisions with less input from you. Yep, yeah, I don't think that's out of the realm of possibility at all.
Ally 1:11:09
You mentioned it in the islet podcast. You mentioned that particular individual who doesn't announce meals. Yeah, I know him quite well, yeah. And I also know his settings quite well, okay? And not everybody can do those settings. No, they are not appropriate for most of the population. My
Speaker 1 1:11:32
imagination is they're very aggressive, right? Yes, yeah, yes,
Ally 1:11:36
and we both use probably a similar amount of insulin per day, but in very, very different ways. Okay, yeah, yeah. So there is no way I could, like, I can get away with not announcing about 20 grams, no more than that, okay, yeah, because my correction factor is so pathetic, yeah?
Speaker 1 1:12:00
Well, exactly I that's what I tell ardent. I was like, now that you know, now that your correction factor, basal rate, etc, is where it is, you're gonna have to be very like vestibious, about, about, about pre bossing too,
Ally 1:12:13
yep, yep, absolutely, yeah. So yeah, but yeah. I mean, for some people, and I'm thinking perhaps middle aged blokes, for some people, that may be doable in the near future.
Speaker 1 1:12:29
Oh, yeah. I mean, I don't see how it can't get at least better. Yeah,
Ally 1:12:35
better, yeah, because, I mean, the islets doing the meal estimations now, yeah, you know, I mean, we're probably not going to get the islet in Australia for another 10 years, but, you know, whatever.
Speaker 1 1:12:49
Well, that's, yeah, a different problem. My thought would be, and I know very little about this, but, but my thought would be, couldn't there one day be an onboard, personalized AI model that's just paying attention to your insulin needs and making adjustments and things like that, yeah, and working
Ally 1:13:11
out your movement patterns. And do you know what I'd like? I would like my pump to identify if I have a different ballet teacher? Oh,
Speaker 1 1:13:23
that's interesting, because, because you get different, like, like, workouts with them, yeah, different workouts, yep, that's something, yeah, yeah. Well, again, somebody would have to put a ton of effort into that. But, like, it really is just an AB model, right? Like, you know, forget the teacher. Like, a, I have this outcome. B, I have this outcome. Walking into ballet class and saying, This is going to be an A experience, or a B experience, like C experience, right? Yeah, yeah. You could put as much into it as you want, as far as efforts, that'd be that'd be great, yeah. I just think it's there. I think the more data we have, the more data can train. And if you had data on yourself, the machine learning was just paying attention to you, I would think that after time, it could make some pretty reasonable guesses. Yeah, so I don't know. Yeah, true. I put it the same way all the time, like I read a news story that led me down a rabbit hole a little bit, and using the idea of, like, self driving cars, yeah? And the the company Tesla, like they had so much data coming from their cars at one point that the computers they had available to them weren't even powerful enough to crunch the deal with the information, yeah. So they pivoted and built their own processors and date and computers so that, like, like they they brought their own computer system together just to date, deal with the data. And once they did that, the ability for the car to drive itself has, like, expanded exponentially over a short amount of time. And that's a. Much bigger problem I would imagine than your blood sugar. So I just wonder how close we are to somebody like thinking that and moving in that direction. I actually have tried to set up an interview right now with a company who's talking about that. Let's hope that, um, they come through and get me the guy. So anyway, awesome. Yeah. All right, I gotta let you go. It's part you're it's probably like two o'clock. What time is it there? It's two o'clock in the morning. Oh, Jesus Christ, go
Unknown Speaker 1:15:27
to sleep. Alright, I've got a late start tomorrow.
Speaker 1 1:15:30
I appreciate you doing this with me so much. Ali, thank you. Well, thank
Ally 1:15:33
you for the opportunity. I just hope I've been vaguely reassuring
Speaker 1 1:15:37
that was awesome. Well, I didn't ask you. I guess if I asked the Canadians that they have a penguin, have you ever sat down on a toilet and there was a snake in it? Frogs, no snake. Have you ever seen a spider that you thought, Oh, I'm gonna die,
Unknown Speaker 1:15:50
yeah, frequently. And snakes, yeah,
Speaker 1 1:15:55
that you think, Oh, that could trick me and then eat me face first. Yeah?
Ally 1:15:59
Yeah. Okay, yeah, absolutely, yeah. I'm staying here, and I worked in the outback for many, many years. There was some scary out there.
Speaker 1 1:16:11
What's more scary? Snakes or crocodiles? Oh,
Ally 1:16:15
snakes might kill you. Crocodiles almost certainly will, yeah, if it's a salt water, okay, canoeing next to a freshie, yeah, they're pretty harmless.
Speaker 1 1:16:25
How about sharks? How many times have you been on a beach and somebody's yelled, shark? Never, awesome, never No, okay, and a kangaroo is a weird animal, right? Yeah,
Ally 1:16:37
I've hit a few, you know, with your car,
Scott Benner 1:16:40
yeah, how do they make out in that scenario?
Unknown Speaker 1:16:44
Not great, nor does the car.
Speaker 1 1:16:48
Our deer are crazy like, yeah. Similar concept, yeah. They'll wreck your car and get up and walk away. Yeah, yeah. Similar concept, yeah. No kidding. All right, thank you. Thank you for verifying what I thought about the spiders and the snakes. I appreciate that. Oh,
Unknown Speaker 1:17:03
terrifying, yeah. Hold on a second.
Speaker 1 1:17:13
This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram, and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes. Are you tired of getting a rash from your CGM adhesive? Give the ever since 365 a try, ever since cgm.com/juice box. Beautiful silicone that they use it changes every day, keeps it fresh. Not only that, you only have to change the sensor once a year. So I mean, that's better. Thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juice box. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card if you're looking for community around type one diabetes, check out the Juicebox Podcast. Private, Facebook group. Juice box podcast, type one diabetes, but everybody is welcome type one, type two gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast. Type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.
Please support the sponsors
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
