#165 Gouda Monkey
Can't you hear the thunder, George is from a land down under....
In this episode we talk about type 1 diabetes, MDI, Freestyle Libre and a lot more. You better run, you better take cover! fyi: The episode title has almost nothing to do with anything.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Ladies and gentlemen, boys and girls, children of all ages. This is Episode 165, the Juicebox Podcast. And as always, it's brought to you today by Dexcom. And on the pod, you have a lot of options to find out more about those two great companies. You can listen to the ads later in the show, which I suggest you do, because I make them fun. You can also go to Juicebox podcast.com. To find links. You can find links in the show notes in your podcast app. Or you can type olden times dexcom.com forward slash juice box Endor and why not end? My omnipod.com forward slash juice box? I'm gonna think of a title for this episode right now live while we're talking. Part of me wants to call it Gouda monkey you'll find out later why part of me wants to call it something simple like George down on earth because George's from Australia. Part of me says though Scott be a little more creative in that a little more creative. And I say to you, I don't know if I can. What else could this one be called? Milk, the silent killer. Again, you'll find out why later. I can't just tell y'all right now if I tell you all right now it's gonna be the whole episode. And then it'll be like listen to the episode where you can just go listen to the episode. Please remember that nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise. I am not a doctor. Always consult a physician before becoming bold with insulin. What about Australian Gouda monkey? Gouda monkey Gouda monkey. Do you love those two words together? They they fascinate me. Let me just warn you now that George's multicultural accent is going to just lull you into a happy spot. Hello, George. How are you? I'm good. How are you? Good here it's like Ilan musk Crocodile Dundee. And James Bond had a baby away. Do you think that should be the title of the episode? What if James Bond Ilan musk and Crocodile Dundee had a baby? That's pretty obtuse and odd. It's not as strange as Google monkey though. Huh?
George 2:19
What did we do like 10 years ago, we like actually phone each other or something, I suppose. And you'd sit there with like a microphone and hold it against the phone. And then I try not to move.
Scott Benner 2:27
I can't even imagine my I listen, I can't even get my son to call people he's known as whole life. You know, like, I said, you guys are texting back and forth. It seems like you're just misunderstanding each other. I said, I think if you spoke for 30 seconds, this would be fixed. But we don't do that as well. I don't know what that even means. Just call him now that you want that they would they wouldn't even consider it. This. This past summer was actually great. Because during his baseball recruiting process, he actually had to call coaches on the phone and speak to them. So that was actually part of his upbringing. I don't even know that. I don't know what he would do. I don't even know didn't know how to speak on the phone if it wasn't for this one thing. So
George 3:07
yeah, I have exactly that nowadays. Like I'm so used to texting, so used to sending emails that I can make. I could actually just phone this company. I could call them and make an appointment and see this person. It just never occurred to me. Yeah,
Scott Benner 3:19
no, it is. It's interesting. I'm very much still a phone call person I like to even when if people contact me kind of outside of the podcast, and they have like this, like specific question about like diabetes, I'll always say just, you know, you should just call me. Because what are we going to do? We're going to go back and forth through email 50 times, you're going to ask a question, I'm going to misunderstand it, I'm going to go through this long explanation that you're going to misunderstand. So we could talk for 10 minutes, you'd understand.
George 3:45
So now you miss all the context and you miss the inflections and people's voices. And I guess we've lost something by going on to text and it's hard to see what you've lost until you realize you've lost that. I guess now
Scott Benner 3:56
that that I think is 100% true. Okay, so what time is it where you are right now? I tend to one in the morning. Okay, so everyone, first of all, we've had people sit in their cars on their lunch breaks in the sweltering heat to be on the podcast. But I don't know if anyone's ever sat up till one o'clock in the morning to do the podcast. So George, thank you very much. I appreciate it. And I appreciate you listening from obviously we can tell from your accent you're from Minnesota, is that correct?
George 4:22
I live in Australia, where I'm actually gonna have to try my really my hardest not to swear just by default we swear about everything. So yeah, not to swear not to throw too many of these lying around, I guess.
Scott Benner 4:34
Well, the the slang is fine, because we can always go backwards and explain it but the swearing if it gives you any hope. And I don't know how much the people who listen to this podcast would or would not believe this, but I curse throughout my day. As if just I don't know I use cursing as joining words, adjectives verbs, it doesn't matter really. There's a lot of cursing, but I somehow I can get on here and I can stop myself. So um I don't know how that happens. Exactly, but I'm hopeful. I'm hopeful that
George 5:05
sounds like you'd fit in here just fine. Oh, I
Scott Benner 5:07
think I'd be okay. Except for. Are there snakes there?
Unknown Speaker 5:13
Yeah,
Scott Benner 5:13
I'm not coming.
George 5:14
Yeah, we have we have lots of dangerous and deadly things. It's quite good.
Scott Benner 5:18
What is that? Like? Listen, we have to take a couple of seconds here. Like, what's it? So around here lately? I am in New Jersey right now the most dangerous thing that is outside? Is? I don't know, I don't think there's any real danger where I live. I mean, I guess a deer could come through my yard lose its mind and crap in my grass. Like, I mean, I guess it's the best that I could imagine that could happen to me. But do you have that feeling like you go outside and think I have to like, are you brought up that way? Like, I can't I have to make sure there's not a spider on me or something like that? Or is it just does it not get funded? Like,
George 5:55
um, probably the most dangerous thing. I live in the inner city. So probably the most dangerous thing that I see is like cars. They're pretty dangerous. They are flying middleboxes not good for your health when they hit you. But, you know, like, I used to live outside the city. And yeah, there's all sorts of stuff that kills you, and you just get used to avoiding it.
Scott Benner 6:16
And it's interesting. Do you actually know a person who's been, like, felled by a animal?
Unknown Speaker 6:24
Ah, no.
Scott Benner 6:27
So that's interesting.
George 6:28
I mean, you you see all the videos on the internet and stuff, right? Like, like when you see the spiders eating birds. I mean, that's, that's unsettling. Right? I don't like that either. I don't live in those places.
Scott Benner 6:41
Okay, so we have some context. You're in a city. You're not. You're not on some large flat piece of sand somewhere.
George 6:50
Yeah, I used to live. I mean, I used to live on a farm. We had this crazy idea that they were going to farm and be great. Until we realized that like, nobody would even deliver takeout to a farm. So that was like, we decided already crap idea and gave up after about a year and a half.
Scott Benner 7:04
You seem like a fairly free spirit from when we go back and forth. So So tell me, let's let's figure out who you are. Exactly. How old are you?
George 7:11
So I'm, what, 3637 years old? I have to do the math sometimes. Because after a while you stopped counting? Of course. Yeah. 36.
Scott Benner 7:20
Yeah. What, what year or how old? were you when you were diagnosed with type one?
George 7:24
So I am actually coming up with my diversity in three days. Oh, wow. So I've had it for about a year.
Scott Benner 7:31
And so 35 years old, suddenly you have type one diabetes?
George 7:36
I know. Right? Um, and yeah, I mean, like, I had all the usual symptoms and just kind of, you know, googling things and going like, No, no, Surely it's not that, like, what are the chances that this is this is no, this is impossible. And then I went and saw my doctor. And, you know, I described to my doctor and said, a few of these symptoms, he's like, looks at me, he goes, Well, you pretty healthy, it's impossible. And then, you know, doing some just regular blood tests, I get my bloods done once a year anyway, because I live on a plant based diet. So I kind of want to check that I have a line minerals and, you know, everything's just running smoothly. So, you know, once a year, I go off and get everything checked. And Saturday morning, the next morning, the doctor calls me says you should come in now, and that's never a good call. You know, like, if everything's okay, they'll wait till Monday, but they did not wait till Monday. Are you a vegan or vegetarian? Or how do you? So I like to I like to say I live on a plant based diet. I'm not 100% vegan. I do run into the occasional animal products and I don't lose my you know, lose my marbles when that happens. Okay, so I don't like the connotations of the word as well. I find sometimes when you say you're vegan, it just comes with a whole boat of other stuff. Okay. But it is a lifestyle. I tried to leave like I don't use animal products. I'm not not big on the cruelty. I think that industry's got got a lot to answer for. And I found myself a lot healthier since I switched off all animal products and just doing a live on pole, the whole food
Unknown Speaker 9:03
cow. How long ago did you make that change?
George 9:06
Ah, four or five years. I mean, I've been vegetarian probably for the last 15 years on and off. But then about four years ago, my wife was she was on a mission to prove a point is that you you eat too much cheese. And I was like, okay, maybe you have a point here. And then we started doing some investigations. And after a while, we kind of went Yeah, we do eat too much cheese. And actually, it's not very good for you. So we should probably stop this. And in the process. She actually also ended up on a plant based diet as well.
Scott Benner 9:32
So are you here to say that a plant based diet Causes Type One Diabetes? Is that what this is about this,
George 9:37
this very well might be right.
Scott Benner 9:41
I tell people, like you're being healthy, it's gonna kill you.
George 9:47
being alive is the leading cause of death losing leading cause of death, right?
Scott Benner 9:50
There's a road in Philadelphia that's named after this person. I can't remember at this point, but it's from my childhood and he was this just avid runner and he died running on this road. Have a heart attack. And so the name that wrote after my I always thought it was a, it was a way to warn people against running. I didn't know, I wasn't sure what they were trying to accomplish by naming the road after that this road kills runners is what I always thought. Now, obviously, so I'm joking. Nothing causes type one diabetes, you have a autoimmune disease. So okay, so this is interesting to tell that the more people right, people knew that I don't think anyone's eccentric, I always feel like this, I run into people all the time who don't understand. I always try to go home and think about all the things I don't understand, you know what I mean? Like, so there's a million things that I don't get. And if someone came up to me and had this horrible personal experience wrapped around, you know, I don't know, it makes something out of anything, and you approached me with it, I wouldn't know the your level of how it's impacted you, I wouldn't know how to properly talk to you about it so that you wouldn't feel offended or, or, or just, you know, horrible. I always try to feel that way. And diabetes is just, I don't know, it's one of those things. I wish people didn't joke about it. I would like to not turn on the television and hear somebody make an offhanded joke about diabetes. And at the same time, when I do I don't really think much of it. I wish they wouldn't I know it probably causes a larger misunderstanding. But this is a misunderstanding that is so large at this point that I don't know how you would. I don't, I don't know how you would fix that like, like, you know, this, you know, this giant Slurpee from 711 is going to give me diabetes is is just, it's it's just it's there's throwaway lines to people trying to make stupid jokes. You know, I don't know how I don't even know how you take a person like that, hold them down long enough, educate them about it, and then make them promise not to do it again. I don't know, I don't see a way around it, honestly.
George 11:48
I mean, it's really, really sad actually. Because, I mean, from one aspect, I don't blame people who don't understand and don't know, or I get a bit upset or tired is when I see it coming out of you know, people who should actually know better folks who studied some basic medicine, or, you know, have involvement or have actually some sort of risk factor or something like that, where they've been told by their doctor, hey, you know, you have pre diabetes, and it just doesn't do anything for them. And I think they just kind of shrug it off a whole bunch. And, yeah, that's where it gets really disappointing to me. I mean, I know we're looking more tattoos there. But I guess, there aren't
Scott Benner 12:29
near but I think that's the real danger, too, is that when, and I've I've met people before I've typed too, and they don't even really, no one's really even explained it to them. Like it was just like, it was like someone told them, hey, you have a vitamin D deficiency take this vitamin once a day. And you know, it'll be okay. And they, I've met a lot of people with type two who treat it that way. By the way, I've met people with type one who treat their type one like that, like I just inject, you know, I bring my highs down. And that's it, like people do that. And it's sad, but I don't know if you're I don't I've never really been political on the podcast at all. But it really bothered me last week, and I don't know if it's ever going to be found that I don't think anyone's ever going to call him on it. I was hoping that, that a media outlet would but I guess it's not going to happen. But there's, you know, you know, unconfirmed reports that that in the course of talking about Supreme Court nominees, that Trump when he got the Sonia Sotomayor just said, I forget what the quote was that somebody asked how he was planning on replacing her and he said, her health no good diabetes. And that, you know, if he really said that, you know, forget the political aspects of it. I'm not, I don't care about that side of it. I care about the idea that there's somebody at the top who just looks at someone with Type One Diabetes and thinks, Oh, you don't have to worry about her, she'll be dead soon. You know, like, that's that? How does that when conversations about health care come up? Are you really someone who that person's thinking, hey, if we help these people, they can live better? Is he looking at you like, Well, you know, we'll just, we'll do what's humane until you drop dead? You know what I mean? Like, that's, that would be my fear there.
George 14:12
Yeah, I mean, it really, to me, it indicates a lack of compassion and empathy. And, you know, as soon as we lose compassion and empathy for the people around us, no matter who we are, really, we lose, I think, a critical part of what it means to be human and what it means to live in a functioning society. And then from that aspect, I think it's incredibly sad.
Scott Benner 14:33
Yep. And that I think, is what you were talking about. It's just people who are actually in the position to affect something are when they don't understand and they need to or they should. That's the that's horrifying. Even you hear stories all the time people who go to their endocrinologist and the level of direction they get from their endo sometimes is specious. It's it's a, it's kind of fascinating that you're going to a doctor who doesn't completely get what you're asking them about and they are taking the same approach when you stop and think about it, and I talked about here all the time, like, I think that people get, like, Don't die today advice, sometimes they don't get be healthy advice. And if you really kind of extrapolate that out that you don't have to have your blood sugar here, you know, it can be 200 all day, that's fine. When you when you're getting bad advice, what that's really saying to you is you should not have an expectation of a healthy life. So you have diabetes. So now this is going to happen to you, and it is going to give you long term complications, or it's going to shorten your existence, or whatever it is, that acceptance from a medical person is staggering. You know, not to want to try harder, or try something else, you might be trying as hard as you can, but try something else, you know, make an adjustment, then, then I, that's probably pretty much why the podcast is here, because that that just upsets me.
George 15:51
Yeah, I think it's really shocking in that the way we have our medical system set up at this time, is one that optimizes for really short term outcomes, as opposed to just looking at the rest of your life. And, you know, I mean, I hear these shocking stories about people who've been to a doctor here and a doctor there and a doctor here and a doctor there. And over the years, they've just, you know, sort of accreted medication, and then been admitted to hospital. And then at that point, in time, somebody actually had a chance to look at all the hospitals, or look at all the medication they're on and they're taking, you know, 25 pills, and they slowly wind it all back. And the person, you know, gets better. Yeah. And you kind of go well, it's not really rocket science. But, you know, at some point in time, the, there's a disconnect, like, I think, whole bunch of information is lost between transfer between doctors, but then each doctor does the really, really, really safe thing. And, you know, sometimes they're really safe thing is a good thing to do. But a lot of the time, you don't really get anywhere by stepping in staying inside your comfort zone, you've got to step outside your comfort zone, you've got to engage a little bit more, and you've got to accept that you can die, because you can die. But you know, like, I'm gonna die either way. So am I gonna die, like, I have a small, very small risk of dying, like, in the next couple of days, which I do kind of have anyway, right? Because I live in a city and I go drive cars flying past me. But, you know, also you're gonna do I died definitely, like, really early and young, because I just didn't pay any attention to the management of my disease. And I think what happens is, when you have somebody like an endocrinologist who makes those decisions for you, they never give you the choice, they just kind of go, it's safer for me, if they know you don't die today. So I'm just gonna go with that, right. And then you didn't even know that
Scott Benner 17:32
you could live longer kind of thing. If we can stretch your life out just long enough, when you go, I can say up said complications of Type One Diabetes wasn't my fault. And I don't think everyone even has that. I don't even want to say that. That's the intention. It's just, it's funny, as you were talking just now, I thought, when we started speaking at the beginning, I'm gonna have to leave it in now, where we're just talking about texting versus phone calls, really is the same thing in medicine, like it's the texting is that idea of something quick and immediate. And, you know, gratifying like I did this, and I heard right back, and that was it. But you lose all the context. And the same thing with medicine as you go in for these quick visits. No, it's not a real conversation. It's they're asking you the questions. They feel like they're, you know, the practice tells them to ask you, you answer them, it never goes anywhere. You know, it's meaningless. They're just trying to mine out information. But wouldn't it be better if you could actually sit and talk and maybe through the conversation, figure out what you're concerned about? Or what the doctor is trying to find out? But it doesn't work that way. So
George 18:35
yeah, I mean, I kind of get it as well as right. From one aspect to healthcare as a volume business, we have, you know, however, many hundred million of us and we've got to be kept alive. And so if we all go to the doctor all the time, like there just isn't any time for this. And so, you know, the doctors are overworked? And yeah, it's a difficult solution, a difficult problem to fix, I
Scott Benner 18:54
guess. Well, I think it is that i think that i think what you just said, and what I believe is you're not going to fix it. I think it is what it is, then the rest of it falls on you. And I you know, what are we going to like you said, What? Are we going to go home and try to figure out on our own? What are we going to stand up for ourselves for and push a little harder when we don't like the answer that comes back. And that's, that's what I find most when I speak to people is that they just, you know, I said it over and over again. But there are these, the few people in society that you just you're, you're bred, grown up told not to question them, you know, doctors are smarter than you. They went to more school, they're, you know, somehow they're magical. You don't ask them questions, they ask you questions, police officers, teachers, people, you're supposed to just blindly kind of follow. And I just don't buy into that in. You know, I say it here all the time. Like I don't buy into that in all walks of life, except if a cop asked me to put my hands up, I'm absolutely going to do that. But But that's only because he has a gun. So, you know, I never was once a person who listened and said, well, you're older than me. So you must automatically be cracked, or you know, so when you feel something Inside about your diabetes, you have to speak up. You can't You can't just take this like head in the sand approach, or you know, as my have watched my mom lived her whole life like this, my mom is I will cross that bridge when we come to a kind of a person. And I was like, Mom, why don't we have a plan for when the bridge gets here, when that'd be better? You know? And so, the small one doesn't have to be huge. But let's not spend a month standing at the foot of the bridge going, hmm. Wonder what we should do? You know, especially with your health. That's all. George, why are you on the podcast? I forget.
Unknown Speaker 20:36
Yeah.
George 20:38
I think we spoke, you put out a call a couple of weeks ago, a couple of months ago, I don't remember. And you were saying look, you know, you're looking for people who are on MDI, and who are doing pretty well. And so I said, put my hand up, and Well, look, I'm doing okay. Okay, so I thought I would come on and talk about that for a bit, maybe
Scott Benner 20:53
go. Okay. But before we do that, let's talk about Omni pod for a minute. The world's most incredible insulin pump. And it's tubeless. I've received two separate messages just today, one from a person who listened to the podcast, and began the Omni pod and is just starting today, and the other from someone who began months ago, and was reporting back about their endocrinologist appointment. And I'm not going to give you any other details. But how about the sentence, I've been stocking the sevens and lo aids for a couple of years. And because of the Omni pod and the Juicebox Podcast, I'm now below 6.5. Come on. That's an amazing drop. All you need are the right tools, and the right ideas about how to use them. And I'm telling you right now the Omni pod is 100,000% the right tool, you should go right now to my Omni pod.com Ford slash juice box or click on the link in your show notes or Juicebox podcast.com. And try the free no obligation demo pod today free, no obligation free and no obligation. All you do is fill in your information and on the pod sends you out a demo pod. From there, you can do whatever you want with it, you could put it under a short table like to make it's not rocket if you wanted to. But that would be a waste. When what you really should do is try it on and wear it and see what you think. And after you inevitably love it, start getting the on the pot insulin pump for yourself. Come on guys, Spring Summer is going to be here soon. Get rid of the tubing. I'll tell you what, I'll leave a little extra music here. So you can get your computer right now go to Juicebox podcast.com. Click on the link here. I'll even turn it up for you Samsung.
Unknown Speaker 22:39
Gouda monkey, monkey, monkey, monkey.
Scott Benner 22:43
You know, right away, most people are going to hear that you're on a plant based diet and you're on MDI and they're gonna go Of course you are you don't eat any carbs. But how many carbs Do you take in in the course of a day?
George 22:54
I eat somewhere in the region of it depends on the day, right? Like today was about 100 because I wasn't feeling particularly Caribbean, you know, but other days, I can eat anywhere up to 250. Okay. So it most I realized that for most of my calories I find if I eat entirely carbs, I just I'm hungry all the time. Until I find like if I as long as I have fat with every single meal. So things like avocado or lack of mayonnaise, or nuts or anything that sort of just stretches out the time in between meals where I just feel hungry, I feel satiated for a little bit a lot longer. I don't rely very heavily on Protein Protein Shake in the morning when I've done some exercise. That's about the extent of protein I get. But you know, like nobody ever shows up the doctor with a protein deficiency. So I'm not worried about them.
Scott Benner 23:41
Do you have any diabetes technology are using? I mean, yeah, so I use a I use a freestyle Libra.
George 23:47
Okay, that's what I use as my my. You can't really call it a CGM, but it gives you the data that a CGM gives you. And then I use an app on the iPhone, which I put all my data into. And it gives me predictions of my blood glucose into the future, which is pretty cool.
Scott Benner 24:02
Okay, what's that called?
George 24:03
It's called predict pgl.
Scott Benner 24:06
Is that something it's just about? Is it only available in Australia?
George 24:10
No, I think it's actually globally. And so it's on both Android and iOS. And it's written by a guy who lives down in Victoria, one of the states here. And he's a type one, and his daughter is a type one. And he ended up writing the software because they went on to pumps. And like the software on the pumps, but didn't like being attached to devices, we have a limited range of devices you can get in this country. And so they just weren't, you know, weren't keen on being attached. And, you know, with the tubing and getting caught on door handles and all the various stuff that comes along with that. Yeah, so they switched back on to injections. And when they did so, he wanted the features that you get in the pump. So being able to track bazel rates across the day and being able to track your carb ratios and you know, your correction ratios and then being able to tune for a bunch of different stuff. So being able to put in exercise factors and say, Well, I'm going to go and do exercise now. So for 120 minutes, I'm going to need that percent less incident. So you can plug all of the stuff into that, given your current blue blood glucose reading, give it your carbs, and it'll tell you where it thinks your blood glucose is gonna end up
Unknown Speaker 25:10
how I find it.
George 25:11
I was I was skeptical at first, but I kind of live in the app now. And it's very accurate, like, shockingly accurate.
Scott Benner 25:19
So he's probably got something in that app along the lines of what these artificial pancreas algorithms are going to be like.
George 25:28
Yeah, that's, that's what I expect. And you know, I think, I think quite valuable about the app as well is that you can, it sort of gives you a mental model for how a pancreas works. So you can sort of play around with it. And because it's not a real pancreas, you can also do things you can be like, what if I put a unit in now? What would it do? You can sort of see what it would do? You could be like, what if I ate grams of carbs? What will it do, and it kind of gives you an idea. And so you can sort of poke around without actually doing real things come to a decision. And then you know, make a treatment decision based on that then actually roll back and go and do the treatment decision to yourself, and then have a fairly good idea of where you're going to go.
Scott Benner 26:03
I love that. And so do you find that's teaching you in a way that you almost don't need the app as much as you did in the beginning? Like are you liking? Yeah,
George 26:11
absolutely. I think I think the app help boot me up onto a mental model of how my diabetes worked probably, you know, weeks Foster, like I got, I went through a bunch of apps. When I first started, I started with, I started with my sugar, and I was just logging stuff in, I was logging stuff. And I had them for the pro version, then I was like, Well, why am I logging stuff? This is the most pointless exercise in the world, I get some pretty graphs, but like, what am I doing with this? And then I dug around and I found some other apps and they were the same, I just keep logging stuff. And I'm just like, why am I engaging in all this toil? Like, this makes no sense. And then eventually, I found this app. And then I was logging stuff in was, I was getting something back for my login. And I was like, this is really satisfying. I'm seeing where I'm going.
Scott Benner 26:53
I saw I'm really interested that you said that. Because over the years, I've not to impugn one because I don't I don't have that much knowledge of any of them. But I've had people come at me all the time, like, Oh, you know, we want to talk about our app on your podcast, or can you look at this app for your blog? And, and I always just say, well, what's it do it? Because in the end, it always feels like what you just said, like, so I put in a bunch of information. And then I get a graph, is that correct? And then what do I do? Like, then I have to figure out what the graph means. And I don't know it just at some point. It just seems like so much effort. And it's not like you have an answer. It's just more information. And so I was like, I probably could figure this out without your app, you know, like, and but an app that does something, an app that actually says that what you said earlier is being able to tell it Hey, um, if I did this right now, what do you think would happen? That's fantastic.
George 27:48
Like that. I mean, that is even better than that. What I find is when when you put a reading in, and it doesn't match what the app expects, then the app will say to you, Hey, I didn't expect that this is what I did expect. Here's some reasons why it could be different. So for example, if I put in a reading of, say, a blood sugar of nine, I'd have no idea what that is an American, either
Unknown Speaker 28:12
doesn't matter.
George 28:14
I actually actually have a chart here so that I could I could look this up. So if I put in a blood sugar of like, say 182, right? And the thing was expecting, say somewhere in the region of 100, then it would say to me, Hey, you know, I was expecting 100, you put it in this? You've got it could be this too many, there's too many carbs, like did you accidentally get your carb count wrong, like might have got got around by this month. Or alternatively, maybe you didn't put enough insulin in. So maybe you You said you put in this much, but it wasn't that it was this much too little. So you need to change your carb ratio. Or maybe your correction factor was incorrect, maybe, you know, you initiate a correction, and it didn't come down. And this is typically what happens to me when my basal rate is off. And I'll see that I'll put in corrections. And I'll tell the app that I'm putting in corrections. And then I'll go and put in a you know, another reading maybe another two hours later. And it'll be the same as the one previously and the app will just freak out and be like, Hey, you know, this, you should have come down by a cup. Maybe 20 or 30 points, but you didn't. Why is this can pops up and gives me a little thing. And I'll be like, I just think you can you can dismiss them. And you know, it's just giving you suggestions, but I just dismiss them and be like, Okay, well I know my basal rates wrong. So it just gives you this really, I guess, good understanding for why something might be out. It's interesting. That's really that's really cool. What's it called again? It's called predict bgl
Scott Benner 29:31
wants to take a look and see what it means. That just sounds like worthwhile. I know, are you how do you make adjustments to like you were talking about basal insulin? No, but you're, you're using a long acting base. All right.
George 29:44
Yeah. So I spent a lot of time playing with this. Because I think, you know, bazel is the, it's the foundation of everything we do. And if you get that wrong, then you just you can't build on anything, right? Like you just don't know where you're at. Yeah. And so, so So many times when I see people that like, my insulin just, it's just unpredictable. I'm probably like, well, you probably find your basal rates incorrect, right? So when you think you're injecting for this food, you're not only injecting for this food, you're also covering some of that with you're covering, you know, your base was too low and you weren't covering that. And you know, your body doesn't know the difference between insulin right? Your body insulins insulin. And so you know, if you've got your basal rate out, then it just throws everything out.
Scott Benner 30:29
This weekend, I managed Arden's blood sugar from halfway across the country. Hmm. How did I do that? Did I talk to her constantly? Nope, actually never spoke to her once. You may be wondering, well, how did you do that? Scott? Did you write messages on small scraps of paper, fold them up, stick them in a pocket of a monkey made out of Gouda cheese and have them swing across vines to get to her? No, I didn't do that. That would not be efficient. And the cheese would melt that I use the world's most powerful diabetes tool in conjunction with the world's most powerful communication soul. That is correct. I use a dexcom continuous glucose monitor and text messaging. Pretty cool, huh? So my daughter Arden is wearing the dexcom g six continuous glucose monitor that speaks to her cell phone, which speaks to the internet, which speaks to my phone, which tells me what her blood sugar is, and where it's going. From there. I can make treatment decisions with her through text messages, just Hey, why don't you post as much. I'll just set a Temp Basal. She can text me I'm about to eat a cupcake, which she was doing at a swim party while I was away. Try to imagine that is that something you'd be comfortable with because it's something that I'm comfortable with? My 13 year old daughter was at a swim party with Type One Diabetes, where she then one of the cupcake text messages, mere moments of time, hardly interrupted what she was doing. definitely impacted her blood sugar. blood sugar's were great all weekend. There are a ton of amazing things I could say about the dexcom continuous glucose monitor. But this time, they don't want to tell you peace of mind. unparalleled peace of mind. That's what you get. I know you want it dexcom.com forward slash juice box with the links in your show notes. Were at Juicebox podcast.com. Do not hesitate. Your body doesn't know the difference between insulin right your body insulins insulin. And so you know, if you've got your basal rate out, then it just throws everything out. If you have your basal is really in check you can make you can manipulate your blood sugar with bazel. You don't even need to, you know there are times you don't even need to Bolus like when Arden woke up this morning, her blood sugar was 140. And I wanted it to come down. So I just increased her Basal for an hour. And now I don't know where it's at. Whoa, I can look. She is 109. So that worked out Yeah. And that was it. But if if, if her bazel was off to light and I start bolusing then I still don't have the bazel The bazel is still not there yet time still moves forward, your your body is still forcing your blood sugar up. Because you don't have this this background and someone holding it down where it's supposed to. It gets lost so easily. Nobody even thinks about it. You know, it's cool that you are actually so are you? Do you want a pump?
George 33:33
Ah, no, no, I mean, so from two aspects. I want a pump because it has 10 phases. And that's the entire reason I want a pump. The reasons I don't want a pump is I do a ton of hot room yoga. And I just think the insulin will cook inside a really hot room. And then also just I'm not huge on things being attached to me. But I mean, the other thing is, I feel like I've got great control. So I mean, I'm just not going to mess with it.
Scott Benner 33:59
And so how much of that do you feel like? Is your basals? Really? Can you hear bazel? He is snoring like crazy today? bazel please? bazel making a podcast? What are you doing? It's just I don't have that dog snores like crazy. I'm sorry. Do you how much of that you put towards the the idea of the plant based diet? Like if you like, do you think if I I don't know, if you weren't eating that way that you'd feel differently? Like how much of MDI is not much of a problem for me. I've got this predictive data from this, this app,
George 34:31
do you think is fun? I think it's I think it's a combination of factors, right? Like, I think you've got to, you've got to set your life up so that when you stumble, you fall into the pit of success. And if you do that, then everything becomes easy. And so like over time, I've just made all these incremental changes and the sum of all those incremental changes has been a great outcome. So you know, I've never done my best All right, that took me that took me so long to you know, changing various insolence and I was trying different things. And there's a whole story behind that. And then, at the same time, like, I'm on a plant based diet, so I eat a diet low in saturated fat. And I did a bunch of research into that, and turns out saturated fat blocks, the signaling pathway between insulin receptors and the glucose pumps inside the cells. And so I see this and I started noticing this, like when I eat junk food that's high in saturated fat, and my insulin sensitivity just goes out the window for about a day. And so I was like, Okay, well, they're great as treats, but maybe I'm going to cut down on that. So I started cutting down on that. And then I, you know, I did a lot of exercise. And I noticed when I do the exercise, my insulin sensitivity goes away through the roof. And I was like, Okay, well, how much exercise do I have to do? And so I eventually settled on, you know, I do Adrien Bikram yoga, Bikram yoga, like once every two days, because if I do it once every four or five days, then everything just becomes all wonky. But if I do it every second day, I just stayed nice and flat and level. And so I think the sum of all these things that I do I just end up, I just don't, it doesn't really feel like work after a while. And then I don't have to pay that much attention. And everything just seems easy. And how do you have?
Scott Benner 36:07
How do you have time? Like, what is your lifestyle like that, that you can do the yoga like every other day? Like if you asked me to do anything every other day, I would tell you, I couldn't commit to it. So how does that like, what do you do for a living that, like you work from your home or like that kind of stuff.
George 36:27
So I'm at the moment, I'm on a year sabbatical, I decided to take a year off, just to figure out how to learn my disease. And I'm in the fortunate position that I work for a software company, and we had a good year, good couple of years. So I decided, like, this is my year that I wanted to take off. But even prior to that, I mean, I've been doing yoga for years. And so I'll typically do you know, get up and go to a 6am class or 7:45am class and do yoga for 90 minutes, and then finish up, have a shower, go to work and work for the day and come home. I mean, I live in the inner city. So everything's on foot that substantially helps my lifestyle I don't ever get in a car. And I have this very expensive hunk of metal that just sits down in a parking space that I pay money every week for and it just gets me I just got the insurance and they're like pay some money for the car, you don't use it.
Scott Benner 37:20
Do you ever, you know just not drive at all, these are just something you
Unknown Speaker 37:23
do once every two weeks.
George 37:25
Maybe we might go do some shopping once every two weeks. But we when we used to live out on the farm, as I was saying like that you just needed a car. Like as I say nobody would even bring you take out. So you just you could not get by without a car. But here in the inner city, it's just too painful, right like so you have to find parking, and you just, you can't do things with cars in inner cities. It just doesn't work. And so we tend to do everything on foot, both my wife and I, we just walk everywhere. And you know, that's been a substantial factor in my health as well. Because now all of a sudden, I'm just getting exercise as part of my day to day routine.
Scott Benner 38:02
How long were you married when you were diagnosed?
George 38:06
We've been married probably about five, six years, but we've been together about 15. Okay, so you,
Scott Benner 38:12
you know your wife for 16 years, and you're diagnosed pretty much at the end of that 15 so far, how did how was it for her? Did you notice? Did you notice any shift in your relationship? Or? Did it cause weirdness or strengthen things? or What did you notice happening?
George 38:30
I don't think it caused weirdness. I think it caused, I mean, from one aspect, I'm a bit of a bit of a test tube for her. So she's studying medicine. And so she's been focusing a lot recently on diabetes. Just ironically, actually, at the time I was diagnosed, excuse me, she was writing a term paper on diabetes. And she was like, Hey, I think you have diabetes. And I was like, No, surely not. She's like, No, no, I'm studying it right now. I think you do. So that was that was a good giggle. But you know, I think it had it had the effect on her on her mental health. Just in terms of like this, somebody you love, and now you worry for them. And you're like, like, what are they doing, how they manage this, and she doesn't really get involved in the day to day management. But she kind of gets involved in the day to day worrying if that makes sense. Do you
Scott Benner 39:17
ever wake up in the middle of the night and she's creeping next year with the Libra holding it up against the sensor or? Yeah. Let me just see real quick. And that's interesting. You You said something about the Libra earlier about it not really being a continuous glucose monitor. I agree with you. I think what it does is really cool. I think it's a Do you use it as a big meter? Is it kind of how you say it like a meter that you don't have to poke your finger for or do you have a meter and you use the lever? How does that work?
George 39:45
So there's a little there's actually a little finger prick meter built into the Libra. Okay, so I kind of use that I use, you do use the test strips on that. But I mean I do kind of obsessively scan probably once every half an hour but it Honestly, what what ends up happening i think is and you probably experienced this as well is that after a while, get it, you get a good sense of where your blood sugar is going and where it's at. And so you just periodically checking in and the time for doing a reading is, you know, just seconds. And so in terms of Am I am I just picking up a picking up a device and looking at it? Or am I picking up the device waving it against my arm and then looking at it the difference is not all that big. And what I would like those integration for say, you know, something on my watch, or maybe some alarms those, those would be really nice. But I've gotten gotten pretty talented at the sort of the wake up in the middle of the night scan myself keep the light on underneath the blanket, make sure not to wipe my wake my wife up and then when I know everything's okay, go back to sleep. And like did I actually scan last night?
Scott Benner 40:49
I was explaining to somebody the other day that art was getting braces. And you know, he was talking about it kind of now he has braces and what do you do and she doesn't eat food overnight frequently. But there are times where ardently to banana like in her sleep. And I said it so offhandedly. As I was talking to him, you could see the conversation just brown to a halt. And his look came over his face. And I said oh, I'm gonna have to explain that to you, I guess. And so I you know, I said so Arden can eat a banana while she's sleeping, if I hold it. And that started to make more sense to him. And he goes, I don't understand. I said, I just say Arden, your blood sugar is low, we're going to eat a banana. And then I touch her lips with the banana. And then she takes a bite of it. And then when she's done, she chews and she swallows, I give her more until I've given her as much as I want. I said then we try to rinse your mouth out with some water. And but if you ask her The next day, she has no recollection of that whatsoever. And so I said I guess technically Arden could eat a banana in her sleep. And I even after the explanation, he still sort of just you could tell he was not 100% sure what was happening. It was interesting.
George 41:55
I don't believe this. Like I get that I wake up some mornings. And I'm like, I wonder how many times I woke up last night to scan my blood sugar. And it'll be like four or five, but I don't really remember.
Scott Benner 42:04
Yeah, I'm, I'm, I can't do the wake up go back to the sleep thing. So I'm more of get it definitely right and then pass out kind of got I once I don't know I have a hard time. Like going back to sleep waking up and going back to sleep that kills me, it's almost better for me to stay up sometimes.
George 42:24
Just think I spent years on call working in a technology company with you know, some random service somewhere would go down in the infrastructure and you'd get paged, and you'd have to get up and function. And so over the years, I developed this ability to essentially wake up function for five minutes, and then just go back straight back straight back.
Scott Benner 42:42
That's a pretty good superpower, actually. So George, first of all, you're doing great not cursing, it's fantastic. bazel story has picked up to the point where I'm going to ask the hold on one second, I'm going to get up and move him a little bit. And I'll be right back. He's now distracting me. I don't know if it's if it's even something anyone would ever hear on the recording. But I can't think through it. So hold on one second. When we started to record, the dogs were in separate different beds. And I was like Oh, the one who doesn't snore is near me and the one that does stores way away from me. This is fantastic. And then as we started talking, they switch spots.
George 43:17
So are you recording now
Unknown Speaker 43:18
let's just fix Yeah, how
Scott Benner 43:19
can I mess this up? Hold on, I know. So well. Okay, so let's walk through a little bit of the MDI kind of an idea. So do you have to? What kind of insulin are you using?
George 43:32
Okay, so when I was diagnosed, they put me on nother rapid, which I think you guys will know the log, and lantis. Okay, um, so I kind of started and then you kind of fumble through it and tell how much am I taking what doses etc. And so, you know, you know, typically in hospital, they just give you two pens, and they're like, Well, here's two pens, that's probably enough for the next week, go to your GP get a script and go from there. And so I kind of did that. And then quite quickly discovered that the pens only have one unit doses. And so I quite quickly needed to change up and move to half unit doses because I was still quite insulin sensitive at the time. At the moment, I'm now using novolog whenever appid and Liv Amir and I use it in the pencils. So you'd have three ml cartridges and I load them into an echo pen, which then once I've dialed up the dose and shot it into me it'll, it has a little calendar a little. It's like a counter on the back, which tells you the last dose and how many hours ago it was, which is pretty cool. And then I'll put that into my my app, and that tells me insulin on board. So the app has got a setting for essentially whenever you put in a bolus you put in a URL if you say how long your insulin is active for and it'll you know give you it can track the curve and just say you've got this much left on board. So I don't have to worry about keeping that in my brain because I'm terrible like that. And I ended up on levemir because actually have a random blog. I was chatting to somebody about this today but I was just reading a blog somewhere and This guy was saying, Oh, my kid always hypose on Lantus after exercise. And I was like, Yeah, I have that on this movie Deliver me it would help. And so I chatted to my endo about it. And he said, well give it a go. And that was my main reason for switching. switched from Lantus levemir. I tried splitting my dose I was really wasn't getting coverage with Lantus because I think the one of the way, one of the things about lantis is when you have a slightly smaller dose, it just doesn't. It just runs out early. So they sort of, say 24 hours, but I was sort of getting about 2021 hours out of it. And so I just had these two random highs throughout the day, I was like one one in the morning and one at night. I was like, well, it's sort of when the dose is wearing off, until I moved to Livermore because of all of those reasons. And then it was really nice, actually, the hypose disappeared after moving to live a mere exercise fibers. And so now I don't even hardly ever change my bezel dose like after exercise, I just don't need to find as long as I don't really have any any fast acting insulin on board. I don't I don't know how to exercise
Scott Benner 45:57
live, Amir, are you shooting 11 or once a day now or do still, um,
George 46:02
I split it, it works better. If you split, I've actually now moved to a three way split, because I found the dose action is about eight hours somewhere that eight to 10 hours of peak. And so I get up first thing in the morning, and I'll you know, put a shot in about 630. And then I'll do another one around about lunchtime, and then one just before I go to bed. And then I kind of like that for for two reasons. One, it gives me this this, you know, always I've always got an eight hour peak coming on. But the other nice thing is, when my basil does move around, it gives me three intervention points through the day. So if I'm running slightly higher, my basil are running slightly low, then I can say okay, well in the next one, I'll just knock that down by maybe you know, two. But again, because living here also has a peak, it has a distinctive peak and a distinctive sort of degradation action over the course like once you get to sort of 16 hours in it really starts to go down and it's the dose is not so active, you get these three different peaks you can work with. So I will take less overnight, for instance, whereas with something like Lantus, it's, it's a flatter action. And once you stack them on top of each other, there isn't really much benefit to stacking them in different amounts. Because, you know, over the course of a day, they will just add up to a total daily dose. Whereas if let me add that one actually wears off. And so you can put a new one in and you get it you get a different basal rate. And I find that like super useful because you can then really, really tweak. That's cool.
Scott Benner 47:25
I know that when Arden was first diagnosed, we used Lantus, but it burned. Yeah. So we moved. We moved to love Amir, and then so you've tried to imagine, you know, that many years ago, the internet wasn't really as like so I found through googling. This web space where pharma people, the sales, people were talking about their drugs. But it wasn't private. You didn't need a password to get into it. And I found this one spot where these salespeople who were selling Lantus, were talking about how they feel bad telling people that didn't last for 24 hours when they No it doesn't. And that that made me go, oh, okay, that makes sense. You know, like, that makes sense. That's why we're seeing this hire right here, because it's gone. She doesn't have any bazel right here. And that's when I started splitting it just every 12 hours, which ended up working fine for Arden, but I wasn't looking into it at that time, as closely as you are now. And so I imagine if I would have figured out what you figured out, maybe I would have gone to two more injections of it to that makes a lot of sense. But
George 48:36
I find that I find that like works really, really well for me. I mean, the other thing is I looked into the insulin action. And so as you say what you know, Lantus you you get the burn. But the way Lantus works is it sort of it's a it's an acidic substance that then sublimates under your skin in the fat into a little ball of insulin that sits wherever it sits right. And then there's there's two interesting things about that. The first thing I found is that, and I think this is why I have I have no evidence to suggest this. But I think this is the way I had to hypose is that that ball is going to break down at whatever rate it breaks down. If I go into a hot room yoga class, I've just heated up my body that's going to break down slightly faster. And so what I found is that on days, I would do our dream yoga, we'd get this hypo after exercise, and then later in the day, I'd have the tie and I'm just like, why is early what without why did why did this happen?
Scott Benner 49:24
But yeah, but yeah, so you know, it crystallizes under the skin and then it basically just melts away slowly giving you giving you insulin slowly. And I've always thought you can tell it's working faster now. Or it's, you know, it's you can just have
George 49:40
like there are moments but the other thing about that is that it creates this little ball of insulin right? Now if you think about a bowl, the bigger the bowl, the bigger the surface area of the ball, right? And so the bigger the surface area, the more insulin there is to create to like sort of sublimate out and just sort of break down into the into the surrounding tissue. And so I think this is why they have now Gone with their new incidents, they've gone with higher dose insulins to make the ball smaller again, because if you're injecting a big ball of insulin, then you just by definition got much more surface area, like a bigger ball has more surface area. So you get more insulin into you at any one point in time. And then as it shrinks in size,
Scott Benner 50:17
there's less, it gets less. Yeah. And then your tie, yeah, there's
George 50:21
less, but then you also sort of had a peak. And so you know, it's just not even. And I think they've done a lot of a lot of work on this. But I'm still not too keen on a little ball of insulin somewhere in my body.
Scott Benner 50:31
Just We'll see. It's funny. I've broken things down into overly simplistic statements. But in the end, what we just said was, if your blood sugar is high, you probably miss timed or miscalculated the amount of insulin you have not enough insulin. And if your blood sugar is low, you probably have mis timed it or have too little. And it really is it's all about what I there's a thread I was looking at on Facebook before I started talking to you. And it's all about what do I do? How do I get my blood sugar down? Why is my blood sugar high, you don't have enough insulin. But that it's really not more difficult than that that basic concept. Now how you how you get the correct amount of insulin at the right amount of time gets to be a bigger idea. But in the in the very beginning, if your insulin, your blood sugar's high, you don't have enough insulin. That's it. It's that simple.
George 51:20
It's exactly that it works exactly the same way for bagels as well. And I think, you know, as soon as I put two and two together with that, that's when you know, that's when I really started to make progress.
Scott Benner 51:30
All right, juice. Okay, so plant based, I diagnose you probably out of your honeymoon period. Now you were talking about needing a half unit? And yeah,
George 51:39
I mean, I was I there was one point where actually, I was trying a keto diet just because I wanted to see if it worked. And I was actually not having any insulin because I was just typing. But that came to a swift end. And, yeah, last couple of weeks, it's just been, you know, it's been a bit of going down and increment slowly. But surely, in the last couple of weeks, I've been like, what the hell is going on here? I'm injecting like, for a horse.
Scott Benner 52:02
Yeah, it is how it starts to feel, especially when it makes that big shift, where you're like, Oh, I used to use this little bit. But now it's so because it does seem like, it's funny, too. I think, when you're injecting it, when you can really see it, it's a little more impactful. Like when you tell a pump to give you 15 units, it's just a number. But when you look at 15 units in a needle, it's a lot of insulin. You know, like, like, physically, when you look at it, you're like, Wow, that's a lot of volume. But here, so it's a little more impactful. I think when you see it going to be perfectly honest. So plus you feel it because you're injecting quicker, where pumps kind of like the Omni pod, for instance, if you take a big bolus, the only Patil take, it could take a minute or so to put it in it goes in much more slowly, as an example. But that's interesting. It really is. How's healthcare in Australia? What is uh, what's your, like, what falls to you, I'm already fascinated that you were able to take a sabbatical. That's so unAmerican, that's incredible. You wouldn't get a year off here, if you had 16 babies, they came out your ears, they'd be like, get back to work.
George 53:16
I kind of feel that. But now I mean, healthcare is good. So I mean, let me give you an idea of what my typical my typical experiences. So I live in the eliminator city, I picked a GP who has a practice near my work. There, they're everywhere. I particularly look one look for one that who does does what we call bulk billing. So by being an Australian citizen, I get free health care free access to Medicare. We call it Medicare here. It's not it's sort of the the single payer health care system that we have. So I'm not Australian by birth, I moved here about 10 years ago. But yeah, as I once I, once I became a naturalized citizen, they go cool. Here's your Medicare card. And so there's a bunch of reasons many ways you qualify. But ultimately, if you find a GPU does bulk billing, and what they're saying is that the rebates that you'll get from Medicare will cover their expenses. So I found when it does that, that means I don't pay for any of my GP visits. Like, I can go to them as often as I want in my GPS, like, Oh, hey, good to see you again. And then yeah, Medicare will will pay for that. Typically, most labs are on Medicare, so I don't really pay for those, I guess, and, you know, less, I really get out of hand, but you know, I go and get a couple of lab tests per year. And that doesn't seem to doesn't seem to touch sides. I've never noticed the ball. You know, DGP gives me a piece of paper, I'm making a point with a nurse and she takes the blood out of me signs a piece of paper, and then I come back a day later and I've got some results. And so that's I don't don't see a cost to that. For my end, I've registered with a public health hospital here that has a great Diabetes Center. And so I see my endo. I was seeing him once every three months. I now See him? He said, he looked at me right now you're doing fine. I'll see you in six months. But I don't pay for that either. That's again, belt build. So I've got a bug called endo endocrinologist as well. And then that that diabetes clinic has an attached or that that diabetes clinic has an attached set of educators. And so they actually run in a separate group at a Diabetes Center. And they have, they have, you know, some nurses and some dietitians, and psychologists, and essentially, I can go and see those those people for free as well. And it's just basically finding them up and going, Hey, how are you going? I'd like to talk to you about x and they go, Okay, great. I got a space on my calendar here. Let's talk about that. Then. If I go and do some more complicated stuff, so let's say going and seeing a specialist, or maybe going and seeing a psychologist or maybe going and getting some surgery, that's where you start to encounter costs. Emergency healthcare is always free. Like, if I just if I get sick, I just walk into, I walk into a hospital now. And they'll just be like, Oh, hey, you're sick. Okay, cool. Let's sort that out. And you generally won't see a cost about that. But when you get admitted to hospital, then it gets complicated. Like, have you got hospital cover? They're kind of they kind of push you into into having that. Are you in a private hospital? Do you? There's a whole bunch of like rules and regulations and conditions. But you know, for most stuff, like if you're willing to wait, you can get away with no cost. And so it sort of becomes a trade off of like, Do I want this done faster? Or is this sort of a more optional treatment? So stuff like chiropractors and yeah, pretty much just the more, the more not would you call them I guess? Yeah, like not
Scott Benner 56:45
annoyances. Yeah. Well, what about the insulin? Does the insulin cost money?
George 56:52
Yeah, so I pay $35 for a PBS script. So the way it works out here is that I will get a script from my GP. And then all the medications that we have are on a scheme called the Pharmaceutical Benefits Scheme. And if the medication is on there, then it's it's covered in a script. So a standard script costs 35 $37, Ozzy, and there are ways to get that cheaper. So like, if you don't have a job, or you don't have, like, if you earn less than a certain amount, etc, there's like a whole bunch of conditions you can get out, you can get a concession card, and then it cost like eight. And then it just you go to your pharmacy, and they give you whatever the standard doses. And so with my insulin I get whatever it is, I think it's a five ml cartridges. So I get five boxes of five. So I'll get five fives, what's that
Scott Benner 57:41
35 cartridges for about $37 about $1 a cartridge. And if your insulin needs went up and double, they would still be the same mount or with the mount go have also?
George 57:50
No, no, I just that's the standard script. So I'll get a script for that much. And if that last me as long as it lasts me and I got one repeat. And then I go in the lab that repeat, I'll pay the $35 again. And then I'll go to my GP and get another one. That's pretty good. Was the LIBOR free? Or did you? Unfortunately not No, I have to pay for that. Although there's, there's a consultation going on at the moment. So the way the diabetes stuff works is slightly differently. So insulin is obviously medication that's covered on PBS just as basically all the medication that you can get. But for diabetes stuff, they run a separate scheme called the ndss. So when you when you become a diabetic, like you're sitting there in hospital, and you're like what the hell has just happened to me and you get a stream of people coming through it, one of the people that come through is a an educator who comes and registers you with a scheme called the NDS s, and they kind of validate that you actually have diabetes, and that you're this type, and that you get a card and it kind of register you. And then you can take that card to any pharmacy or you can go online to their website, and that gives you access to diabetes supplies. So using that card, I don't pay for needles, but I can just have an endless supply of needles if I want, I get access to subsidize test strips. So instead of paying whatever it is 50 bucks a box, I pay I think 17 if I'm always on a pump, I'd get access to my pump supplies at a reduced cost. And like so basically all of the all of the management tools for diabetes are covered under the ndss. So CGM has been made available to under 20 ones in Australia. So if I was under 21, I could just go and get a CGM, and they would give it to me, and that would be free. But they haven't yet approved funding for anybody over the age of 21. So about six months ago, they kicked off a consultation as to whether or not they're going to find the Libra but they haven't yet made a decision. And so we're hoping, hoping holding thumbs
Scott Benner 59:38
were without the the lever without the without the you know, the alerts. It really is. It's a really great big meter. You know, to me like where you don't have to poke yourself because you even said like I have to wake up and look or you were talking earlier about how like every half an hour you look, I believe that if the if this isn't a sales pitch, but if you were if you were on Dexcom you You had your, your your level set, you would get to a comfortable place where you'd never think to look at it unless it was beeping at you. And so and so that's the difference. I think LIBOR is really cool. I just don't think it's a CGM. Like it's Yeah. Right. I
George 1:00:13
mean, it's what's good going for it is it's got the cost. And I think it's also got, and I don't have to calibrate it.
Scott Benner 1:00:19
So you're managing Well, with type one with with injections, got a Libra plant based diet, which I applaud you on. Did you was that hard to get into a plant based diet? Or were you always a healthier eater to begin with? Or was it a big transition for him?
George 1:00:35
No, actually, I mean, so ironically, this is this is 20 year old me like 21 year old mine, my brain. I don't know what I was thinking. But anyway, I was, I was living in London at the time, and I was looking at what I was eating, I was like, I'm eating a lot of junk food. If I turned vegetarian, I'll eat less junk food. I don't ask me how I thought that I thought at the time. And so I said, Okay, well, I'm going vegetarian. Until I became a vegetarian, and that kind of forced me to cook my kind of my, and brain logic said that if I don't eat meat, I'll be able to eat less take out the side. I don't know, I had, to me that I
Unknown Speaker 1:01:12
just had to believe.
George 1:01:15
Like, anyway, it worked for me. And I ended up learning to cook and, and you know, like, over the years, like, you kind of just eventually lose the flavor for me at some point in time. It's just, I'm just like, Yeah, no, not my thing. But also sort of the same becomes I think the biggest one was like sort of dairy and cheese, because it's so addictive. Like, literally addictive. is a is a castle, morphine is like a morphine analog in cow milk, which keeps the baby cows happy, but also has the side effect of getting you addicted to it. As a human
Scott Benner 1:01:49
cheese is one of those things that you don't think of as being unhealthy, but it's not particularly healthy. It just but it is one of those, it falls into a category in your mind, for some reason, where it's very, it feels natural. So you're like, Okay, cheese,
George 1:02:04
but I remember I was I was in Amsterdam at the time on on a, just like sort of a I want to say working holiday, but I was working for the company I work for. And they have a they have offices in Amsterdam, and I was just kind of out there for three months working and like, like, do you think Americans like cheese, like the Dutch are just like, everything is cheap. Like life is cheese, if you live in Holland. And it's all like just, it's none of us like processed cheese is just like it's these all these really these boutique cheeses that have aged and you just kind of crazy. And I'd been eating all this cheese. And then at the time, that was when my wife was like, we should eat less cheese and go vegan. And so I watched a you know, I think I watched the milk documentary or something like that. And I was just like, okay, that's me. I'm done overnight. And so I just went cold turkey and cheese. And actually went through like morphine withdrawal. Like I remember like, lying in bed shaking, sweating, the most horrible thing I've ever experienced, really. I was like this from cheese.
Scott Benner 1:03:02
You had the Gouda monkey on your back. That's
George 1:03:05
literally withdrawal symptoms. And I was just in bed shaking, like for about four days. And then it just went away. And I was like, Oh, thank god that's over. That's
Scott Benner 1:03:14
crazy. And George, don't be surprised if this episode is called Gouda monkey. butt. I'm, I'm somehow delighted by the idea that you had withdrawal from cheats, but it's just not something that would ever have occurred to me that a person would have said, so that is really that's fast. And you say because there's what's in the milk that
George 1:03:34
they kind of get is a cup. So camo has a thing called castle morphine. It's one of the proteins that's in Carmack. And but it is literally morphine. And so it binds to the same receptors in your in your brain. And that's why when you eat a piece of cheese, you feel warm and fuzzy. You have a glass of milk, like oh, that's really good. I feel warm and fuzzy from that. So you're getting the most Yeah, you're literally getting a morphine head.
Scott Benner 1:04:00
Well, I don't think that's going to take over the opioid crisis in America. But I think at the same time that is really interesting news that I didn't I never seriously That's insane. Wow,
George 1:04:12
I didn't know about this. And I was like, what, what? What? What? Well, even milk doesn't have that.
Scott Benner 1:04:17
I don't think oh, you're making me wonders what else I don't know. Which I'm assuming is a huge amount of things to be heard. That's Um, so
George 1:04:26
when that happened that was when I was like, I became like, yeah, pretty anti dairy but now it's sort of backed off and like everybody's got their own path. Like you want to have dairy. That's cool. You can have too arrogant like but you know, I just don't think it's particularly healthy. And one of the interesting things I noticed when I cut out dairy out of my diet is just my weight started dropping away like excess water attention, and little bits of puppy fat I was holding on over the years but also my hunger satiated and I think that was related to the growth hormones that are in in cow milk. Because I mean, I didn't really think about it this way but you know, as well I was watching this documentary and they're kind of like, what's the purpose of milk? Right? The purpose of milk is goes from a mother car down to baby cow. And it says the baby cow, you
Scott Benner 1:05:07
should get really big, fat. Yeah.
George 1:05:10
Yeah. And so we, you know, we drink this as humans, are we, you know, what happens? Well, we get bigger,
Unknown Speaker 1:05:16
or, you know,
George 1:05:16
so I stopped having it and like all of a sudden, like, I just my weight normalized. And I was like, wow, I'm certainly not just putting on that extra half keto, a year that you just, you know, you just do as you get older, and you just kind of accept it. And it's my weight stabilized, and I kind of got a whole bunch more energy back. And I was like, wow, this is actually pretty good. I'm gonna go with us. Well,
Scott Benner 1:05:38
where did you like we're over an hour, but I wanted to ask you for so you can hear in your voice like, sure you're from where are you from? Originally? Where were you born?
George 1:05:46
I was born in South Africa.
Scott Benner 1:05:48
Okay. And then Have you lived in a number of different places? It feels like Yeah, yeah, I've
George 1:05:53
lived in. I've lived in the UK. I've lived in London. I've lived in Edinburgh. I've lived here in Sydney. I've lived in Amsterdam. I spent three months backpacking Thailand. But also,
Scott Benner 1:06:04
I think that's about it. Do you feel like you'll stay in a city? Where did you meet your wife?
George 1:06:08
I met my wife in Edinburgh. I think, Well, I think we'll stay in Sydney. I really like Sydney. Actually, it's, you know, it's just, if you can imagine a place that is just basically perpetually Sunny, as good health care and good work. And it's easy to get around to just kind of comfy, it's only downside is that it's expensive. One of the most expensive cities in the world. But like I like that feels like everywhere nowadays. So I don't know that I can count that as a downside.
Scott Benner 1:06:34
I don't know. I mean, so far, I haven't been able to find a place that wasn't expensive to live. That was anywhere you'd want to be for any amount of time. You know, you know, sometimes you just get dark, rural places, you know, this is cheaper. And now I live here forever, like, nowhere to go and nothing to do. And I'm too far from everything. That is the one downside, I guess I'll show you when you leave. It's a long flight to almost everywhere you go. Is that right?
George 1:07:00
Yeah, I mean, I sometimes go home to my parents, and you're kind of you fly over the Arctic, like the Antarctic, whatever the one at the bottom is, you fly over it. And it's like this 14 hour flight. And it's during the during the day. So it's not even like if you fly to the States, at least, you know, they have the good sense to put the plane into the air at something like two, three o'clock in the afternoon so that you watch a movie for two or three hours. And then you have a nap and you wake up in America. Great, cool, I'm refreshed. But to fly to South Africa is just the opposite way around, they leave at 11 o'clock in the morning, and they fly essentially through the day. And then they drop you off or whatever it is four o'clock in the afternoon. You're just like, I couldn't even sleep. I was awake. So hold that whole flight for 14 hours. And like, do you have any idea how bad your movies are? Yeah, so it by the same token, you also just get used to sitting on a plane for 14 hours. And so at some point in time, I kind of went, I you know, I'm gonna tall guy so I get emergency x rows whenever I can. And at some point, I was kind of like, wow, this is only an eight hour flight. I don't need an emergency exit.
Scott Benner 1:08:02
Man, that's something that really that sounds listen. We're at my house here talking now about if we should be moving or what should we should be doing and our minds never go to like it was just really fascinating to hear all the places that you've lived. Were you always following work? Or were you following just whimsy, or how did you end up moving around so much?
George 1:08:23
Mostly random, random reasons. Right? Like, when I first left London, and moved to Edinburgh, it was just a friend of mine was like, Hey, you should move to Edinburgh with me. And I was like, Well, okay, yeah, let's do that. And so I just ended up there. And then, you know, over the years, it's mostly been about traveling. like Thailand, oh, and my wife wasn't my wife at the time. But it was my she was my girlfriend at the time. She said, I am going to go and live in you know, I'm gonna go and backpack Thailand for three months. So it's like, oh, okay, that sounds like a good idea. Let's go do that. And then she was kind of the reason we came to Australia as well. We've been living we come back from Thailand. We've been living in London for a few years. And after doing that, we kind of went she went, I really want to live somewhere warm. Let's go live in Australia. I was like, Well, okay, let's go do that. And so she we moved out to Sydney. And then the rest is sort of just places I've always wanted to visit for extended periods of time to sort of soak into the culture, but never really had the opportunity to and then you know, fortunately the company I work for has offices all over the place. And so I've kind of managed to squeeze a you know, 234 weeks or five weeks or even up to three months. Just go and sort of find a job at that office for a couple of weeks and just go and live there and live in the culture and go do stuff. I think the only really big exception to that was when I we bought a car and drove around Europe for three months and that was just insane.
Scott Benner 1:09:45
It's just it's George's incredibly inspirational. I don't know if you realize or not that just the freedom that you feel to do that is I'm jealous of it. To be perfectly honest. Also, you don't have kids. Is that right? Yeah, I don't have you don't make that as you'll just be wherever You are after that happens.
George 1:10:02
Yeah, we are now Yeah,
Scott Benner 1:10:03
yeah. Right. Oh, that's something a church I this time went by so quickly. I really appreciate you coming on. I had such a great time and you have to go to sleep I would imagine also, is it about to have now I know I'm like thoroughly awake now you're all awake.
George 1:10:17
Now I might as well like go for a run or just like go see what's on at two o'clock in the morning. And today? I think actually almost nothing because government is shut down or fun, fun. And is not. There's a time when defined ends. Yeah, they're like a after I think 12 or 12am. Or like 1am. Like, this is when the fun stops. No kidding.
Unknown Speaker 1:10:36
That's interesting. Yeah, you
George 1:10:37
literally get ridiculous things like they won't serve you. I don't drink alcohol. But like if you do drink alcohol, like you're not allowed to leave a bar after 1am because they won't let you back in or, like after midnight. They're not allowed to serve you spirits without a mixer. And so it's the funniest thing. You let people go into bars. And they're like, I'd like an 18 year old scotch please. And they'll be like, sure. Which which makes it Do you want that with maybe like, what?
Scott Benner 1:10:58
I don't, please. So did
George 1:11:02
you have to now put a Coke into your 18 year old scotch after midnight is just ludicrous.
Scott Benner 1:11:08
Like, listen, this sounds like it. I hope I can visit sometimes that's really something. But I have kids, so probably at Georgia,
George 1:11:18
I keep them entertained before you know, it's not
Scott Benner 1:11:20
even that it's that yours. They have things they have their own lives and you are the facilitator of their lives. And there's just no time to be a god. This is an indictment of parenting. But it's hard to be you and them at the same time, which is ends up being what's going on as you're trying to facilitate their situation. And at the same time, work and make money to pay for things and sleep. And you know, like there's just not you run out of time like this. You know what I mean? It's,
George 1:11:49
I completely understand. And I think that's also the kind thing about parenting right? that your life is no longer yours. You're giving so much to somebody else. I think that's something wonderful parents do. In
Scott Benner 1:12:02
the least manly thing I've done in a while. I watched this football game last night while folding laundry. So that's like, there's a there's a clear delineation between my masculinity and my femininity. Last night, I was just folding laundry, trying to look up at the television to see if deals were going to win. Football being American football. But, but church, thank you so much. I really feel like I could talk forever. I think you've lulled me into a into a feeling of happiness, but your multicultural accent which is delightful. So not only do I have to thank George for coming on the show and sharing but I have to thank him for a follow up note he sent me many weeks later. I'm gonna read it to you. Soon as I find it. Did I find it now here it is I got Hey, mate, I wanted to message you quickly. And let you know that it turns out I am actually still honeymooning. To my surprise. I had a C peptide test. So we could go in and showed I still have some pancreas function. I've been using 35 or 40 units a day, which for my build age and exercise level i thought was about right, given what multiple books said I should be expecting. Anyway, I figured that my good control is assisted but not caused by this. But it would still be unethical of me to claim no honeymoon when I know that not to be true. So I just wanted to let you know, so you could decide how to handle it. So while I want to applaud George for his courtesy and his transparency, I don't think it changes much other than to tell you that you may not know exactly when your honeymoon is over. George is still controlling his diabetes exactly the same way as he spoke about in the episode, nothing's changed. He just needs more insulin. Now. I just want to take a moment to point out who brings the podcast to you, I do the interviews, I set everything up, I write I do the whole thing. But without DAX comment on the pod, I would not have the time to do it. So again, thank you very much to both companies for your generous support of the podcast. It really does help me bring all this information, these people's stories, and anything else that you find valuable about the podcast, it really would not exist without the ex comment on the pod supporting me. I also want to thank the listeners for sharing with friends, family, loved ones, doctors, everyone you tell about the podcast, I know you're doing it, I can see it growing and I get your notes. So thank you very, very much. I really appreciate it. You guys know you can listen to the podcast anywhere including Juicebox podcast.com, or on any podcast app. But did you know you can also listen on Amazon Alexa, don't worry. I won't say the thing that makes your Alexa do something. And you can also listen and you can also listen on Siri with home pod at home if you have that speaker. There's so many different ways. I'm going to see you guys next week. Hey Siri, play the Juicebox Podcast.
Unknown Speaker 1:14:49
You here's the Juicebox Podcast type one diabetes,
Unknown Speaker 1:14:53
where in South America there's so
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#164 Sean has Type 1 Diabetes and Lupus
Professional snowboarder Sean Busby has multiple autoimmune issues....
Sean lives with both type 1 diabetes and Lupus and he wants to be transparent so that other people living with multiple issues can find each other and support. Join Sean by sharing your multiple diagnosis story online. Use the hashtag #NowYouSeeMe
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - google play/android - iheart radio - or their favorite podcast app.
Check out Riding on Insulin here.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello and welcome to Episode 164 of the Juicebox Podcast. Today's episode now you see me? What does that mean? I'll tell you in just a second. Today's episode of the podcast is brought to you by Omni pod with just two components the small wearable pod and the handheld personal diabetes manager. Beyond the pod insulin management system lets you manage insulin delivery simply and discreetly more convenient than daily insulin injections, and more comfortable than traditional tube pumps. The Omni pod enables you to live life more freely. You'll learn more in this episode, or you can go to my Omni pod.com Ford slash juice box for free no obligation demo right now. There's also links in the show notes. The podcast is also brought to you today by dexcom, makers of the G six continuous glucose monitor. We've been using g six for about a week and a half now. I have a very comprehensive review episode coming up in about another week. So I'm looking forward to anyway the Dexcom g six continuous glucose monitor which is a fantastic way to manage the ups and downs of your diabetes. You can learn more dexcom.com Ford slash juice box in the ads later in the podcast. Links in your show notes or Juicebox podcast.com. Now we're going to talk to Sean Busby. Sean is a professional snowboarder, which is actually a thing and his life is it's a bit insane. He's also living with two autoimmune issues and that's why he's on today to talk about lupus and type one diabetes. You can hear bazel snorkelling in the background basically one of the noises No, not now. Fine. onto the show. Here we go.
Unknown Speaker 1:47
Say something
Sean Busby 1:48
that's been testing Hello, hello, perfect.
Scott Benner 1:51
Just gonna say finally someone is used Skype before you called me. Most people just don't even know how it works. So they like what is Skype? Like I know, but it's still the best way to do this stuff. So yeah, I don't know. We sound crystal clear.
Sean Busby 2:05
So it's perfect. Perfect. Awesome.
Scott Benner 2:13
Allow me to remind you right here that nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise, always consult a physician before making changes to your diabetes plan or really doing anything in general. Don't listen to me. I'm an idiot on a podcast. I mean, didn't your parents teach you to be like scared of strangers?
Sean Busby 2:33
I'm Sean Busby. I'm a professional snowboarder living with Type One Diabetes and lupus.
Scott Benner 2:40
Shawn, I think we've never met in person. But I think we've been in the same place a couple of times, and we just wouldn't know it. I feel like I was at something in Philadelphia once you might have been at or something at Lilly. I don't remember exactly. But I feel like I feel like I've been in a situation where people are like that, Shawn. I'm like, oh, and then I just get whisked in a different direction. And I don't think we've ever actually met in person. So it's very nice to meet you.
Sean Busby 3:03
Yeah, likewise.
Scott Benner 3:06
So we're here today to talk about something that riding on insulins doing called Now You See Me, right, and that's to what what's the hashtag supposed to be doing? Yeah,
Sean Busby 3:16
so the hashtag for this campaign during the month of May is called Now You See Me, so just this completely spelled out. But yeah, that's that. That's the hashtag. You nailed it. And we're trying to draw attention to people who are living with multiple autoimmune issues. Correct. So we know that there was a study that about 27% of people that have type one diabetes, will develop another autoimmune disease at some point in their lifetime. So I was one of those and the reason we chose may for this campaign is because like I said, I have lupus, in addition to my type one diabetes, and that's lupus is pretty rare for men to get about one in 10 people that get lupus are men. There's about a total of 500,000 people, or 500,000 been in the world that have it. And so I felt pretty alone when I got that diagnosis and unlike type one diabetes, at first I felt alone but then I found a great community and in type one, the type one community is pretty large and open and there's people talking about it, but not so much with lupus at least with men and with lupus. So I figured, you know, I bet I'm not the only one that's going through a double diagnosis. And anyway, so we chose may because may is also lupus awareness month so we just figured out this is a great time to start this and let's see who else is dealing with
Scott Benner 4:54
a double diagnosis or possibly more. Around here. We when we donate like clothes and things like household goods that you know, to organizations. We always use the Lupus Foundation because I just one day found myself thinking, How unlucky is it to get a disease that some people will tell you doesn't exist? Like, that's not good luck actually showing you have the worst Good luck in the world you got something hardly anybody ever gets and something hardly anybody ever gets at the same time. You must not let a lot or you probably just like, well, it's never gonna go the right way for But seriously, I mean, you got screwed twice, man.
Sean Busby 5:33
Yeah, I see it's funny because I've always spoken about that it's like, and why don't we play the lottery because the odds are looking like it's in our favor. So
Scott Benner 5:42
you always hit the low odds stuff, right? Like so that's Yeah, well,
Unknown Speaker 5:47
I'll say this,
Scott Benner 5:47
Shawn. So I don't think I've ever come out and said this on the podcast yet. But now seems like just as good a time as any. My daughter Arden is just about 14 years old. She's had type one since she was two. And a number of months ago now a while ago, I've maybe I've alluded to it once or twice, but she started having really intense stomach issues. And she would not use the bathroom for days at a time successfully. And then when she went, it was her body just being like, Oh my god, all this has to come out like really like a bad cycle she was in and we came up on our endocrinologist appointment and I walked in I said, Look, I'm I'm sorry to say this, but you're gonna have to test your thyroid. I'm like, because I think her thyroids, like, kind of gone, you know? Yeah. And And sure enough, now she has to take Synthroid every day, and it completely cleared things up. But it just, you know, that that's, you know, like, you think, well, one thing's enough. But to make your point, there it is. There's the second thing and looking back, it's not that surprising. My my wife has hyperthyroidism, and we go back through my wife's family line. And most of the women on my wife's side of the family have some endocrine issue. They're all different, but some one person has celiac. What my wife's grandmother had the celiac, we have a niece who just has like not a great immune system like there's, everyone seems to be a little touched by it. And Arden got to it looks like so. And it's stinks but finding out right away and doing something about it took her from being miserable to being right back. I can't tell you that Synthroid was in her for two, three days, and everything was back to normal again.
Sean Busby 7:36
Wow. Wow. Yeah. I mean, it's nice to know what that enemy is. You know what, that to have a face at least?
Scott Benner 7:43
Tell me a little bit about lupus because I've I'm kind of fascinated by it, but don't really know anything about it. How does it present?
Sean Busby 7:49
Yeah, so it's a super complicated disease, they refer to it as the cruel mystery just because it mimics so many diseases, it mimics multiple sclerosis. It can affect your muscles and mimic forms of like, muscular dystrophy or myositis. And for me, I they suspected it actually when I was 19 years old, and then I was sent out or I guess when I was about 20 years old, and I was sent out to the Mayo Clinic in Minnesota for two weeks. However, during that time and just me asking, Are you still getting good connection with me because I just got something on my phone it says poor connection. You
Scott Benner 8:40
sound great to me. So I'm good.
Sean Busby 8:42
Okay, yeah, awesome. Good. Um, so anyways, yeah, I was able to Mayo Clinic at the time I had severe hives over about 70% of my body. So I was treated with I was being treated with some steroids called prednisone. Which if anyone knows prednisone is super gnarly if you have type one diabetes, it's it's crazy. They try to keep control of your blood sugar's during that time frame. And in addition, that present zone is also one of the major drugs as used to treat lupus and suppress the immune system. So anyways, I get out there and when you're on prednisone can so it can basically mask the symptoms of lupus and the bloodwork okay. And that's essentially kind of what happened is what the doctors thought and but I was, I was put through a barrage of tests over two weeks. I was tested for Addison's disease. I was tested for Ms. All sorts of different complicated autoimmune diseases. And the doctors have Mayo Clinic in Minnesota just said you know, you most likely have a connective tissue disease based on your your lab results and everything we've been seeing. However, it's just not showing its face. It will probably show itself in 10 years with lupus It takes the average person with lupus about six years to get a diagnosis. Anyways, I had just returned from a snowboarding expedition in the Arctic Circle. And when I got back, I had these extreme headaches. And I've never had headaches before. And these headaches made me feel like I was going to have like a seizure, they were just so painful. And then on top of that, I had developed a rash across my face, across my chest, and back. And then I had also developed some sores in my mouth. And I was also really sore. But like, I couldn't tell if I was sore because I'm so active or, and just thinking that was normal, or if it was something else, I speed it up a little and I was sent to I went to my doctor's and the she ran some lab work in the lab work came back my it showed that my muscle enzymes were extremely high and out of range. And she was suspect my doctors expect that suspecting a myositis, or like sort of a kind of a dystrophy style disease of the muscles. And so then I was sent to a neurologist and the neurologist conducted tests. And that neurologist ran some various antibody tests and a bunch of my answer, I had a bunch of antibodies, like an anti nuclear antibody, which is kind of like a screening factor for lupus. And, or, yeah, and so the anti nuclear antibody, you know, that came back super high and positive, but that's been high and positive since I was 19 years old. And when I got diagnosed with Type One Diabetes, now, what I've been told is that an AMA just shows that there's or an anti nuclear antibody just shows that there's an autoimmune response going on, and I have type one diabetes, so it's probably positive because of that. Well, anyways, in addition to that, another test came back positive, which is kind of like the gold standard, like, thankfully, it was positive. So we could, we could catch it, but it's called a an anti double stranded DNA. And what that means is that you produce antibodies against your double stranded DNA so essentially, your body is just making antibodies against its its own cells and blood. And that is a hallmark basically timing of a hallmark diagnosis of lupus. So systemic lupus. So SLE. And I,
Scott Benner 12:42
can I jump in for a second? I just have to ask your question. So you say a lot of things that people don't say like I was at the Arctic Circle snowboarding. And that's, that's not as I've never heard anybody use that sentence before in my entire life. And everything that's happening to you, like, there's something about you're like, what, let me just go back for a second. How old were you when you're diagnosed with type one? I was diagnosed at 19. Okay, so 19. And then all this just starts at once for you. How? How did you live at home at that point where you just ate out in the, like, you live a life that I think most of us don't understand, like, you know, you just asked me if you could still hear. I'm assuming that's because you're like on the end of a flagpole on the top of a mountain trying to get reception or something like that right now.
Sean Busby 13:31
It might not be. And do let me know if you can't hear. For some reason. My phone keeps telling me poor connection. But I'm actually in Alaska right now. And But yeah,
Scott Benner 13:45
I see. That's my point. So So were you that guy when you were 19? Were you in Alaska when you were 19? Kind of were you at home like going maybe I'll go to college, maybe I'll snowboard in the Arctic Circle. Where were you in your life
Unknown Speaker 13:58
at that point?
Sean Busby 13:59
When I was 19, snowboarding was my life. And I was living in Steamboat Springs, Colorado, and my parents live in Southern California. And but I was I was full time training. I was competing and just traveling the world for snowboarding competitions. And so yeah, being diagnosed at 19 my life just kind of totally turned upside down. And I was very confused and very scared about what that meant. How
Scott Benner 14:27
did you prioritize things? Did you see the diabetes is okay? This is first or was the pain first or was there like what did you What did you see as your your biggest foe in the morning?
Sean Busby 14:42
With with lupus,
Scott Benner 14:44
no, but just in general, if you're the type one you've just gotten it you probably don't know a ton about it at that way. You're trying to be incredibly active. Now. Somebody's telling you, you have a different disease on top of that. When you wake up in the morning, like what's the first thing you think about?
Sean Busby 15:00
The first thing I actually think about when I wake up is, is anything hurted. Okay. And so I would say it's primarily focused on lupus. lupus is very, like, if I overdid something from the day before it can cause a flare into disease to become active or come out of remission. I'm also with that I'm highly allergic to sunlight. So that can cause it. So it's, that's the one thing is I'm still learning. It's not like I can go and, you know, test my, my blood and be like, Okay, my lupus is extremely active, and I need to do this. So I just, I usually that's kind of the first thing. However, you know, if I'm wearing my CGM, then I may get to jumpstart with with type one diabetes in the morning, depending on if I'm getting any sort of alarm. So that's kind of nice, too.
Scott Benner 15:53
I just, I mean, man, it's you have an incredible attitude. First of all, I would the first thing I would do if I felt pain was stop snowboarding. And so if you must, must really love it. First of all, actually, in my opinion, anyone who would go out in the cold and do anything, really loves what they're doing, because I don't even I can't wrap my head around being in the cold even so you're like a complete anomaly to me, which is
Unknown Speaker 16:18
fantastic.
Scott Benner 16:22
Boom, here comes the ad. What do I do first, next calm or on the pot? or flip a coin? Hold on, heads or tails heads is on? its head, not a face. It was head on the pod. Okay. Whoever said this podcast wasn't well thought out. Listen to me, right now, I'm gonna say some things that make a lot of sense to you. And to me, and just sense in general, common sense. Would you rather be tied to something or not tied to something, I heard your vote, he said not tied to something. The only pod does not have tubing to understand what that means. It means that you're wearing your insulin pump, you're getting your insulin, but you're not attached to another device that has to hang on your belt, be stuffed in your bra jam down your pants, I don't know what you do with it even be bounced on your head and put a cap on overtop of it. I don't know what to do with it. Because I've never had that problem because my daughter has never had that issue we've always used on the pod, the tubeless insulin pump of the gods, I can make that claim because no one can prove otherwise. Zeus uses an omni pod Zeus leader, the gods has type one diabetes uses Omni pod. I said it. That's 100% true. Prove me wrong. I'm just kidding. Go to my omnipod.com Ford slash juice box. When you do that, you can start a free, no obligation demo pod. They'll send it to you. And you can actually wear it and see what you think you can see that what I'm talking about is 100%. True. And then you just move forward very simply in the process. And on the pod helps you along the way. I actually had an on the pod customer service experience yesterday that I'm going to tell you about. I'm going to extend the music to tell you about it.
So we just had a job change here and we switched health insurance. And very Luckily, I felt like we upgraded our health insurance a little bit. And maybe we wouldn't have to use a third party anymore to buy our our Durable Medical goods, which turns out we don't have to. But all I did was call on the partners like hey, we just switched insurance. I used to use this third party supplier. I was wondering, can I use you now? Can I just buy them directly from you? And they said, Give me your information. That took a couple seconds. Then they said we'll call you back in a couple days. And you know what they did? They actually called me back. Crazy, right? guy calls up and he says hey, I'm calling from Omni pod to check through your insurance. Everything's great. Here's what your coverages we would like to place your first order, just like that. I mean, it was so simple. And I'm telling you that if that was that simple, just the process of getting the no obligation, nonfunctioning demo pod to try and check out. It's got to be the easiest thing in the world. I know so many you have done it. And you get back to me later. You're like, Hey, I tried out the demo pod. Now I'm using the honeypot. And by the way, I appreciate that appreciate it. When you click on the link, click click click on the link in the show notes or Juicebox podcast.com and you can try the demo bot. Thank you very much. I'm just saying I think it's gonna be really easy if my experience is any indication. There's really no muss no fuss give it a try. By omnipod.com forward slash Juicebox Podcast links in your show notes at Juicebox podcast.com. I really believe that you will love using the Omni pod hands on management system.
You open your eyes I'm not in pain. Good day. Check my blood sugar get moving, but then bye I hope I hope you take this the right way. But when somebody tells me they're a professional snowboarder, I can't wrap my brain around what that means or how you have food. So like, what is like how do you what is it they like? What is it they like for you being a professional snowboarder?
Sean Busby 20:14
So yeah, that it's basically consists of, well, and I also now am the Executive Director of Randy on insulin, which is a nonprofit that I started right when I was diagnosed with Type One Diabetes when I was 19. But as a as a snowboarder that I, I've been a professional swimmer, since about the age of like, 16. It's basically communicating with my sponsors that they need to do what to do what I do, I'm figuring out trips, you know, pitching different sorts of trips, or expeditions that I may do to remote mountain ranges, and then also trying to get kind of marketing materials around that. So you're shooting photos, you're shooting video, you're writing articles for snowboard publications and magazines, we're testing here that will be coming out from for the following season or two seasons from now. So a bunch of the year that we usually have is from is Moby out in the, in the next season or the season after, and just kind of always providing feedback.
Scott Benner 21:24
So not much different than when I hear about somebody making like money playing video games, you're you're the the out front face for the activity and for the people who make gear or like that kind of stuff around that activity.
Sean Busby 21:39
Yeah, that's it. I guess that's a good way to put it. That's
Scott Benner 21:42
okay. Well, wow, I wish someone would have told me about that. When I was in high school, I would have not done what I did to be perfectly honest, because your life sounds much cooler. And so also, you are I'm assuming by now people listening are gonna have the same thought as I just did. But you're a go getter. Like that's, is that just kind of burned into who you are. I mean, you're like, I have diabetes. I'll start organization. I'll like that's that not many piano lines work that way, I guess.
Sean Busby 22:08
Yeah, I think a lot of things shaped me. Well, actually, a lot of things did shape me I wasn't. I mean, when I was just a snowboarder, and I didn't have type one diabetes, my focus was just solely it was it was selfish, it was just focused on my sport. And, and I think, you know, with being in being a sort of athlete, you're, you're typically just you want to go go go, you always are setting goals, and you're trying to achieve those goals. When I was diagnosed, I was actually misdiagnosed, I was mis diagnosed with Type two and I became extremely ill and extremely sick for three months, until I got the correct diagnosis of type one. And like when I was in the hospital for 12 days, I lost over 30 pounds of my body weight, I started losing snowboarding sponsors because they didn't want to support an athlete that was chronically sick. So like, while my teammates were going and competing in South America, I was essentially just like in a hospital, or, you know, back home with my parents being taken care of because I couldn't function because I wasn't on insulin. And but once I got that correct diagnosis of type one and got on the insulin and felt how amazing that feeling of having my first insulin shot was, and then it really grounded me and it's and then I had to learn about this disease. And all I found was, again, that community I was reading stories from on the jdrf website during children's congress of you know, five year olds, nine year olds 16 year olds like how they've lived life of type one diabetes and have no no different and how they still go out follow their their goals and their dreams and are being like a normal and are being a normal kid. And that's what inspired me and it showed me if they could do it then surely So could I and so they were they were my driving motivation and I know for a fact that if I got diagnosed with lupus and because of the lack of community and now maybe other people would argue there's you know, there's communities online and all that sort of stuff, but in terms of bed and like a positive community because a lot of stuff you read about online are you know, the really sad but really sad stories, right? Right. Um, and like a great example is Selena Gomez she has lupus she just got a kidney transplant because of it. And so like it's like that sort of those sort of stories that you read. And it it just showed me and that these kids can do it. I can and if I was diagnosed with lupus first I would be a complete wreck. I don't I know for a fact I wouldn't be snowboarding on because I
Scott Benner 24:45
think you would have reached out into the world and found sad stories and those sad stories would have led you towards believing this was your path but instead you reached out found type one people who are have a different message in the community. Is that the idea?
Sean Busby 24:59
Yeah. That's it, that's exactly as and there's just the community is so strong around type one. And I just hope that's the same for many other diseases because like I said, many people living with type one, like your daughter are going to develop another autoimmune disease. But I do really feel like type one set me up with the right tools of managing a chronic illness and the, with the amount of people I can reach out to and get support in that manner. So when I was diagnosed with another chronic illness, I had those I have a blueprint of how to manage such a thing.
Scott Benner 25:36
Yeah, there's sort of this moment, like, out of a bad like sci fi action movie where you're being attacked by flying gorillas. And then, you know, then dragons come up out of the woods, you're just like, Ah, this too, you know, like, like, you know, like, there's that feeling of like, okay, I'll I guess I'll defeat all of this as it comes at me. And I really do think that it goes unsaid sometimes, and it's hard to properly I think, articulate at times for some people, but you definitely don't want diabetes, you don't want everything that comes with it. And but there's this positive part about having it that you can't deny like this. I don't know, like you don't meet people who have type one who aren't, you know, resilient, and resourceful, and, you know, intelligent and thoughtful about their life and their health. And it's, it does something to you having this disease, and most of it sucks, but some of its incredibly positive. You know, I don't know if I've ever said this here once, but my daughter plays softball, but she's a third baseman. And they get involved in this game a couple of years ago, where they run out of pitching and she's like, well, I can throw a ball in your hand, I'll do it. And so she gets in pitches to this girl who's like nine times her size, like we could have hidden Arden inside of the batter if we needed to. And she lines the ball right back to Arden Arden can't quite get her glove on it hits her below the kneecap, knocks her right over. And you know, the coach goes running out on the field. And I was like, Oh, let me go out there. So he doesn't overreact to this. And that's my mind feeling from diabetes. I was like, Oh, she just got hit really hard in the knee. She'll be fine. And you know, like, and I rolled out there and I was like, how How's it going? And she's like, got these tears in the corner of her eye that she's just kind of holding back, you know? And she's like, Oh, it hurts. And I was like, right. And the guy, the coach who just raising a normal girl in the world, he's like, you know, let's get ice on it. Let's do this. And I was like, hold on, chill out. I'm like Arden, what do you want to do? She goes, let me stand up and see if I can throw another pitch. And so she does, right, she finishes the inning. Then she bumps for a single at the bottom of the inning comes back pitches the top of the next inning before she looks over at me and kind of gives me the high sign like, Hey, you know what, let me get out of this, my knees really starting to hurt. And a couple days later, she's at the doctor and she's got this little hairline, like fracture in her knee. And it heals fine, and she's fine. But at that point in her life, 12 years old, you know, a girl weighs 85 pounds at the time, you know, and she never thought like, let me stop. But she just did. She was like, Oh, this sucks. But I'll just keep going. And I genuinely believe that part of that is her personality. But part of that comes from from diabetes, I really do think it does. You know, it's amazing. But if you look deep enough, you can find something good at it. Now, I don't know if you can do the same with lupus or not. I mean, your description of it is I'm gonna be honest, fairly terrible. And it's scary to hear from the outside, like, I don't know, you and you're in Alaska, but if you were closer, I feel like I would hug you if we were nearby. But like, God, I'm so sorry. But do you feel like that day to day? Or do you handle it differently?
Sean Busby 28:53
Uh, yeah, I mean, I every every day is different. And every day, I'm still learning about different things and different therapies. And I, you know, I have a great set of doctors now. So I will fly back from Montana where I have my rheumatologists to also Baltimore, Maryland, where they have the Johns Hopkins lupus center. Okay, um, so I just go, you know, just try to see a center of excellence and just try to stay on top of it. And a lot of it, you know, I think with any chronic disease now, this is just an assumption, but a lot of it comes down to just your Outlook, if you can create a positive outlook around it, and like what creates positive outlook around, he has been involved in the community. So type one, and then also doing what I love, which is snowboarding and that just mentally that's just refreshing. It keeps me going and like, yeah, things can always be scary, regardless of the disease down the future in the future when you've had it for a few years. Like type type one can be scary. loops can be scary. But the important thing is to, for me and for anyone is just just to live right now in the present and you're gonna have bad days, but the bad days that you have like, by having that community and being able to talk to someone that has a chronic illness, it's gonna get you through that and that's going to be like with Type One Diabetes. That's the next best medicine the insulin and it's, it's, it's the only way I feel to be successful with living with chronic disease is to have a sense of community. Yeah, I'm
Scott Benner 30:35
sorry, I'm sending Arden heard lunchtime balls for do we just caught me at the very end of it. But anyway, we're doing a nine unit extended ball is 30% now and the rest over an hour in case anybody's interested her blood sugar's 130. And so it Listen, I can't I can't agree with you enough, honestly. You know, because there's, there's, there's two thoughts here. One is, you need to live your best life today. Like this is the life you have today, you need to make the most of it, if we're going to get hit by a car tomorrow, or my lupus is going to get worse or my type one's going to make my eyeballs fall out or whatever it ends up being, you know, like that. We don't know what the future holds. But we do know the future is out there somewhere. And it's coming eventually. And so be I mean, you're an amazing example of just do although I think you're doing all this just tried to meet Selena Gomez, but I'm just that's my personal idea. Have you met her?
Sean Busby 31:28
I know, but it is. I I do you hope to meet her one day? Yeah,
Scott Benner 31:32
I feel like you're the one that can work this out. But But you're married, right? Yeah, you've wasted that whole opportunity, but never
Unknown Speaker 31:39
nevertheless.
Scott Benner 31:42
Um, but but I mean, seriously, like, you're an amazing example. This for type one, you know, put the lupus aside for a second. Seriously put the loop aside for a second. You're in Alaska snowboarding with type one. What do you use? And you have a Dexcom?
Sean Busby 31:56
Yeah, I have an omni pod. And Dexcom?
Scott Benner 32:00
Yeah, you've got the gear of the best stuff. In my opinion. That's what we use to. And so. And so you're out there with this. I mean, this these little, this little bit of technology flying down the side of a mountain on what appears to me to be a very tiny, like surfboard. And so you're, it doesn't seem I mean, do you ever? Do you ever even stop and look at it like that? I guess you don't, right. Like you just have a different attitude. And I think that's important for people to hear. Because I know how much I've seen the community be kind of bolstered just by the idea that my 13 year old can play four or five softball games in a day and not have, you know, it's um, I think it's amazing for people to be able to see the things that they're most scared of, are not just possible, but they're possible in a really big way. Like, we're not all going to go snowboarding in Alaska. But you know, I mean, if you can snowboard in Alaska, my kid can definitely play, you know, soccer, you know, even like if Chris Freeman can ski across Maine, which apparently he has, you know what I mean? Like them, they might, they might kick and play basketball, rec basketball on Saturday, or I can go to the gym as an adult and not feel worried. But there is a way to manage these things. And and still do the things you want to do. How did you learn that management style? Like how did you figure out how to do what you do without it causing you a real problem with your blood sugar? Or does it?
Sean Busby 33:24
Well, I think that that attitude that you both have right there, that was that was number one, I have that to change my attitude to be like, Okay, this is these are the cards I've been dealt, this is what I needed. This is I, if I still want to be a pro athlete, or an athlete or whatever that was I, I just have to learn. And so I did as much research as I could. I reached out to, to as many people that had type one diabetes, that I came across online and tried to gather information. And then I just started going to the gym. And I was so underweight because I had been misdiagnosed for so long that I would go to like the local YMCA, like super early in the morning, right when they opened up because there'd be less people and I was just kind of a shame that I looked like a skeleton. And I would just do all sorts of different exercises that I normally never would do. I'm not a swimmer, but I would get in the pool. And I would start swimming laps. So I could just learn how my body reacted to that sort of stress or that sort of exercise and I record it in a logbook. And I did this for I did this for a few years, even going into snowboarding competitions, recording every like days before a snowboard competition recording everything that was going off my blood sugar's every two hours through the night. If I was making any corrections what those corrections were if I was giving myself any insulin, what that insulin was, and then resetting my insulin pump to basically mimic how my body had been acting the days before. So I was very hands on with it. And I would say, that's the other big thing of advice I would give is to just be extremely hands on with diabetes Test, test, test and learn our Check, check, check, and learn how to how your body reacts in certain exercises, or different climates, such different environments.
Scott Benner 35:24
So that's amazing. Because I say here on the podcast, I tell people, I'm like, Look, nothing's a mistake, but you need experiences, you know? And then you need to have the the kind of the equation like I did this, and this happened. Next time, I'd like to see this happen. So I'll do this like the you have to, you know, I always talk about like being in a fight, like, if you're in a fistfight, you want to hit first, because then everything that happens afterwards, you dictate, right. So if you make a decision with insulin, then you know, I did this, and this is what happened. But if you wait for diabetes to come at you, then you're forever covering your face and hoping not to get punched in the nose. And and then nothing that happens to you is valuable, because you can't act on it later. Because you don't know how, where it were derived from. And you did that with exercise and how it affected your body, which is brilliant. By the way, how long have you How old are you now? I can't believe I didn't ask you that.
Sean Busby 36:14
I'm 33. Okay, so
Scott Benner 36:16
you've been at this for a bit now. So yeah, 13 ish, 14 years with diabetes and lupus pretty much. But that's And so anyway, so sometimes people know, I'll say like, if you're having a real problem, figuring out like, Pre-Bolus thing is an example, sort of cheat and make the same lunch a couple days in a row. So at least you take out some of the factors and you can see what's going on. You did that like with exercise. And and that's how you taught yourself what your how your body would react to certain situations. So smart. Cheese, Shawn, I didn't know you're gonna do this. This is a great interview. I was like, Shawn, I was like, this is gonna go like 20 minutes, don't worry about I said, well yell about the hashtag a little bit. And I'll say, now you see me, you know, hashtag. And then I'll get you out of here. And now I'm like, Sean's great. We should have taken more time. Here's what I imagined I could be completely wrong. There are magic elves that work at Dexcom. That's what I think. I don't know how scientific it is or possible. But Arden just started using the brand new Dexcom g six continuous glucose monitor about 12 days ago. I'll have a comprehensive review for you coming up next week. But for now, the upgrade in the insertion process alone. You heard Kevin Sarah talking about it back when he was on the show a few weeks ago. But I've now seen it in person. And oh my god, is it easy. And if you believe my daughter, which I do, because she's 13, and doesn't usually lie about things like this, not just painless, she didn't feel it. She didn't notice anything happened. We used it, I was crazy. We stuck on the thingy. And then we push the button. And then she turned back to me with this big look on her face and said, I didn't feel anything. Ain't gonna get better that feeling nothing is pretty much the epitome of what I want to feel when I'm inserting something into my body. I mean, you get what I'm saying. But if I'm getting poked with, let me try to clean this up. If you're going to put a wall, there's no good way this is if you're going to insert a continuous glucose monitor into me, I'd like to not feel it. And apparently, you're not going to, I really want you to go to dexcom.com forward slash juice box or click on the links in the show notes or Juicebox podcast.com to contact Dexcom. And to begin your journey with continuous glucose monitoring. And if you're already a customer, and you want to upgrade to G six, it's very simple to do. Please contact them today to find out more. I'm talking about not just pain free. literally no feeling. Nothing happens. It's like nothingness. On top of that the accuracy is crazy. Good. We're having a great experience with it. I will tell you all more about it very soon. I just want to have some more time with it before I come to conclusions and share them all with you. Pretty responsible of me, don't you think? What are we hoping for people to do with the hashtag ma just put pictures out or to tell their story a little bit about multiple diagnosis or what's your hope?
Sean Busby 39:22
Yeah, so again, we're we're trying to develop that immunity because we know that there are plenty of people out there that are doing it better managing type one in another disease and sometimes you know, for me too, I find where like you said, Have you wake up what do you think about I find a hard time to prioritize Type One Diabetes on Sundays and tight and I and sometimes you can be like oh, well, you know, lupus or type one or whatever it may be is so much worse than then this or that. But that's not fair to do to yourself. If you have any medical conditions there. They're always serious. Yeah. And you need to figure out how to prioritize them equally, and to be able to take care of yourself. And so for this, this month of May, we're doing this. Yeah, the hashtag. Now you see me, it's to basically allow people to come out and speak out about what it's like managing two diseases, share that with others, because most likely, there's people on the other end that are listening that are going to something similar, or maybe even the exact same thing. And so we're asking people to, you know, share their experience. Riding on insulin is putting up a ton of content, along with many of our partners around the world, that are also putting up content, share that content, just get it out there. And if people want to be more involved, they can they can donate to ratting on insulin, which is riding on insulin dot o RG, and just help he just help spread that message of awareness. And let's bring the light light. You know?
Scott Benner 41:04
Well, Shawn, I was gonna say it's incredibly important because you You said something that we all believe about, you know how strong community is and how much it helps you when you're found that and if you have a multiple diagnosis, the community for that is obviously going to be smaller. But it's, it's probably more important because you're dealing with these two things. And, and it is, I think this is a great idea, because you're really encouraging people to get out into the world and be, you know, a little more open about the things that they're dealing with, because they have probably plans and tricks and tips that they could share with each other to or just good stories that would help buoy somebody who's just been diagnosed, you know, the way it worked for you, I always feel badly about it, I don't, I think it's not a very, like, well kept secret. But type, the type to community is not very strong or active. And there are I've had multiple conversations with dozens of different companies, and they all would like to see it, you know, hey, wouldn't it be nice if there was more of a community, but you can't get people with type two in a big block to speak up. And the best, the best, you know, people can guess is that they're embarrassed by it. And so they don't want to talk about it because of the stigma that's pretty unfairly attached to it, you know, and, and this is this, I hope somebody does that for them just the same as I hope that people step up use this hashtag and, and do the same for people living with with multiple auto means, because I think it's just really important to find people who understand and maybe you can find a connection there that will help you so I this is
Unknown Speaker 42:39
Callie as Yeah,
Scott Benner 42:41
no, I appreciate this. I really do. I Wow, john, you doing a nice thing here from Alaska? What? So I before I'm gonna let you go in a minute, but tell me just real quick, what the hell you're doing on Alaska. Now, you know, you're gonna ride a snowboard or no, how do you not die riding a snowboard?
Sean Busby 42:59
Practice,
Scott Benner 43:00
practice? Where do you practice something like that? I've never here I'm going to tell you something. I'll tell you two things. It'll knock your socks off. I've never had a cup of coffee in my entire life. And I've never been on skis. There's two things I don't think and by the way, I've never seen Animal House. There's three things that most people don't believe. Right? And so when I think of skiing, I think of skiing like being eaten by a shark if I'm not in the Ocean Shark can eat me. So if I'm not on skis, I can't run headlong into a tree going what I'm assuming is like 1000 miles an hour. So you said practice how do you practice the snowboard? Where did you do that first?
Sean Busby 43:34
I did that first in Southern California so
Scott Benner 43:39
that makes sense.
Unknown Speaker 43:40
Yeah.
Sean Busby 43:43
went to elementary school in Laguna Beach and ended up in the mountains So yeah, I learned in Southern California. And it was a no to extend this any further but my my brother passed away when I was in high school and snowboarding became a coping mechanism for me it was just a place where I found a closeness to him was being up in the mountains because I grew up in Southern California and you know we had concrete backyards and all that so I need to that open space to reflect and feel close to my brother and God and and all that so that's where that's what really drove my snowboarding and yeah, it just kind of all funneled Alex and scroll from there. Um, I grew up in a soccer family. My father coached college soccer. Um, and
Scott Benner 44:41
that sounds terrible. I just kind of grew up in baseball family world. Yeah, we're a baseball fan. When you say soccer. I feel like you were like die fish should have stepped in and helped you But no, no, no offense to people who like soccer even though it's like a sport that doesn't seem to have any point but anyway. Shawn, we're gonna name this episode Shawn Busbee his life is a disaster and yet he still really upbeat. Dude, I'm so sorry. And I know it's probably been a long time. But you were like, my brother passed away. And I was like this poor guy. Like, have you ever been hit by a car? Has a kangaroo ever stolen your baby? What else has happened to you? Like, like, could you go on forever about like, or is that it?
Sean Busby 45:27
I've had crazy stories. But yeah, it definitely it definitely shaped who I became like, it was all proper, sadly, that I had to go through in my life and in order to be able to face our challenges in the future, as well. And but, yeah, I just got into snowboarding. And then after type one diabetes, I got into the back country side of snowboarding. And my goal is this backcountry snowboard all seven continents. And so just kind of the, I don't know, I think anyone that's an athlete, they're going to want to present, they're going to want to put more extreme challenges in front of them. And this is just something that kind of gives me a mission in my life. I guess
Scott Benner 46:15
I couldn't First of all, I couldn't agree with you more about going through tough things. And and, and, and that building for other stuff. I mean, that's, I think that's a no brainer. I think the most amazing thing you've said here today is that somewhere in South America, there's snow that just might have gone by for most people. But what I've learned in the last 40 minutes, is there snow in South America somewhere. And I never considered that once in my life. I'm assuming it's on the top of a mountain,
Unknown Speaker 46:43
but not so
Scott Benner 46:44
known Africa. See, you know, a lot of people in Africa listened to this podcast. I am literally bowled over by that every time I see people downloading in South Africa all over the continent. It's very strange. But hey, what's up Africa? I'm gonna let you go shopping, because I'm afraid you're gonna tell me that the end of the world is coming and you know about it somehow. Hey, guys, I have some bad news. March 33rd. But seriously, I I didn't I you have a great sense of humor, which is why I'm feel comfortable joking with you, even though we don't know each other. But But seriously, if if the things you just said over this last however long this has been. Don't fill people with hope, then they're not listening correctly. Because you are an amazing example of perseverance in the face of things that a lot of people I think would, would maybe run and hide from and do that's just incredibly commendable. And then on top of it, you're out in the world, sharing it with other people. So that's a that's huge. So yeah, that's really amazing. And I appreciate you coming on and talking about it with me.
Sean Busby 47:55
Now, well, thank you for your time and kind words. Absolutely.
Scott Benner 47:59
Um, can you I'm gonna stop the recording. Could you hold on one second? Yeah. I stopped the recording to ask Shawn for his address. So I could send him a bold with insulin t shirt because I gotta tell you what, that guy is bold. And so I did it. I did send it to the top of a mountain. care of a polar bear in that amazing. None of that is true. But yet I feel like it will be I feel like when it gets to the post office, wherever Sean is, there'll be a mailman. But he'll be a polar bear. It'll be a polar bear dresses a mailman. And they'll be like, Oh, no. And then they'll just like, have like some like, it'll be him in a moose. They'll be talking and then they'll just like eat a penguin. I don't know why I think any of that. I also don't know why people live out in the cold. None of that makes sense to me. You know, it does make sense to me thinking on the pot and Dexcom for being sponsors the Juicebox Podcast, it makes sense to me to say to you again, please click on the links in your show notes or at Juicebox podcast.com. Or if you have to type into a browser I guess you could my on the pod.com forward slash to Xbox or dexcom.com forward slash juice box. Thank you so much for listening for leaving reviews on iTunes for leaving reviews on Amazon for the new Amazon Alexa skill. You guys rock. Seriously. Your good peeps. I appreciate that. So this moose walks into a post office. He's got a penguin under his arm and he says that the polar bear behind the gunner. Hey, you want to eat this penguin? The polar bear looks at the moose and he says nothing could stop me from eating this penguin. Neither snow nor rain nor heat nor gloom of night. I'm a polar bear post office worker.
I'm hungry. And I am hungry. And I do want to eat that penguin. Mr. Moose. Thank you so much for bringing him in to me and we're gonna make penguin soup out of him. And then I will share the soup with you Mr. Moose, the moose. Oh, you're so Hi. Thank you for sharing the penguin soup with me. Post master Grizzly, I meant polar bear. Thank you so much. Why are you still listening to this? Why have you not prioritized your day and said this guy is babbling into this microphone? about some penguin and a moose and I'm still listening. This is a reflection on you not on me.
Unknown Speaker 50:24
Seriously.
Scott Benner 50:31
Oh my god. Have you not stopped it yet? Push stop. Go to the next podcast. I haven't had anything to say for over two minutes. Why are you still here? Nothing's gonna happen. I'm not it's not a Marvel movie. There's not going to be a cutscene at the end. This is it. It's over. I'm giving you permission to stop right now.
Unknown Speaker 50:52
Did you stop it?
Scott Benner 50:55
Are you still here?
Did you just hear some bizarre story like that was crazy. He's a snoring machine.
Unknown Speaker 51:05
Why are you still listening?
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!
#163 Go to Spain and or Apollonia
Kelly hits all the right notes....
Kelly is an opera singer who has type 1 diabetes. Find out more about Kelly's music here.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - google play/android - iheart radio - or their favorite podcast app.
“I will lean on my friends, family, and the DOC for support when I need it. I will focus on educating those around me about T1D, and supporting those who struggle. ”
+ 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 and welcome to Episode 163 of the Juicebox Podcast. Today's episode is sponsored by Omni pod and Dexcom. There will be some wonderfully produced and rather entertaining ads for both later in the show. But for now you can go to dexcom.com Ford slash juicebox or my Omni pod.com forward slash juice box for more information. If you're looking for an insulin pump, or a continuous glucose monitor, just go to the links I just mentioned. There's even links in the Notes for this episode and at Juicebox podcast.com. Today's guest is Kelly Griffin Kelly has type one diabetes, and is a professional performer she sings the opera, which is really cool, because I don't know how anybody can do that maybe I should try to sing the ads in opera later could happen. Anyway, Kelly and I met a long time ago online because she was a performer who felt compelled to hide her type one. But then after she found the podcast and some community online, she started to feel more open about it. We're going to talk about that today plus a lot more. It's really an interesting and encompassing episode, Kelly was even nice enough to send over a piece of one of her performances for me to include in the episode. It sort of sounds difficult, but I bet anybody could do it. Watch. Nothing. Okay. I'm not a soprano, maybe about nothing you hear on that night can't sing nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being bold with insulin. I promise I will never do that again.
Unknown Speaker 1:35
I Scott Kelly, how
Unknown Speaker 1:36
are you?
Unknown Speaker 1:37
I'm good. How are you? Excellent. Thank you.
Scott Benner 1:50
This is gonna be great. I like having the chance to talk to a woman named Kelly who I don't have 25 years of animosity built up with
Unknown Speaker 1:59
not yet.
Unknown Speaker 2:02
You think you would like to do it?
Kelly Griffin 2:07
No, this is very exciting. For me. I've been a fan of the podcast for a long time, I've been listening and gleaning information. And it's really, really helpful. So I'm glad to be here.
Scott Benner 2:21
It's exciting for me too, because you're one of the few people who ever said to me that you were sort of, I've never heard somebody say hey, I kind of hide that I have diabetes. Like Yeah, and that was like, I think our first interaction together, which maybe goes back years now. Right? Right. Right. So that would be to me, you're already recording. So I'll probably just leave all this and
Kelly Griffin 2:47
Yeah, fine. I listen enough. I know, I know what goes on.
Scott Benner 2:53
So just introduce yourself any way you want. And we'll just keep going.
Kelly Griffin 2:56
Or I'm Kelly Griffin. I live in New York City, and I've been dealing with Type One Diabetes for about 15 years. Now.
Scott Benner 3:10
When you say dealing with you don't mean? You don't mean you work in a casino. And you know,
Kelly Griffin 3:15
again, not yet. But I have been living with Type One Diabetes for 15 years.
Scott Benner 3:22
I kind of liked it when you said dealing with if I'm being honest.
Unknown Speaker 3:25
It's pretty accurate.
Unknown Speaker 3:27
I've been putting up with this for
Kelly Griffin 3:30
you know, it's a day today 24 seven thing that that ride along with me, you know, whatever I do so yeah, absolutely.
Scott Benner 3:40
So you live right in the in the city you're in?
Kelly Griffin 3:43
Yep, I'm in New York City, Upper West Side, Manhattan.
Scott Benner 3:48
We never really talked about this. But for people who aren't from the East Coast or have never really been in Manhattan. It is a different lifestyle. You know, like very different, right? So when people talk about like, Oh, I have to carry a meter with me or you know, you're you're just running from building to building you're like ants running from hills, and except in the middle buses are trying to run you over.
Kelly Griffin 4:11
Right? And you are you know, when I leave for my day, depending on you know what my day looks like I may be leaving with a big bag or maybe a backpack everyone does. So, you know, when I I hear people talking about, you know, how am I going to carry my diabetes supplies. When I leave the house, I have so much other stuff that I'm carrying with me that my diabetes supplies are really a small thing compared to everything else because I probably won't be home in between activities and you know, you're running all over the place. So it's just a normal part of every day. And it's funny and I think some of the women will appreciate this. I was trying to get a little cross body bag, which is what they call it a little bag, you know that I should just kind of run around with and put my driver's license, a credit card, maybe some lipstick, and that's about it. But I'm thinking, you know, no, I've got to make sure I've got my pump, got to have my meter, I've got to have everything available. So it's like, there's always a little bit extra work. And it's always there. And I
Scott Benner 5:23
think to just living in the city is like yesterday is a great example. I had to run Arden to the salon right up the street from my house. And then she and Kelly were going to go get their nails done. They're going away this weekend. And so I took her to the to the first stop, I guess I don't know she was getting her eyebrows waxed. I guess that's not bad to say. Right. And I and and then we came home for a second and then she went to the next thing but in the city you don't pitstop back at your house. You had Nomad with that backpack, like every, everything you need for the day needs to be in there. Right? Yeah, it's just, it's a different sort of interesting lifestyle that I don't think exists many other places. Right? How old were you when you were diagnosed?
Kelly Griffin 6:08
I was 25 when I was diagnosed.
Scott Benner 6:11
Okay. And you were already an adult, and you were working in your profession now?
Kelly Griffin 6:16
Yeah, I was. I was actually in graduate school when I was diagnosed, so I was an adult away from home on my own. So I've always been the only one in charge of my diabetes. Yeah.
Scott Benner 6:30
How long are you in grad school? And until we diabetes?
Unknown Speaker 6:36
Oh,
Kelly Griffin 6:37
boy, let's see. I think it was about my last year. So I would say, you know, until about the age of, of 25. And then I, you know, started working and moving about so I'm, I'm involved in classical music. So I have always been working whatever job to kind of allow me to continue doing that. And I also own my own business. And so yeah, I just started living in the real world, you know, with my diabetes after graduate school.
Scott Benner 7:18
And how did that go?
Unknown Speaker 7:20
You know,
Kelly Griffin 7:22
I'm always so envious. The reason I came to you was because I saw the video of you and Arden on YouTube, when she was just a little girl, and you were administering shots. And then also, I think, trying to get her to have a little bit of juice or something because she was very low. And I just look at that. And I think, wow, I wish that for Christmas, one year, somebody could just come and take over my pump and my decks calm. And just let me go about my day. You know, I wish I had that kind of care. It was amazing to see that. But yeah, I was diagnosed as an adult. And I remember when I was diagnosed, they first thought it was type two, because I must have been going through some kind of honeymoon period. And also, because of my age, the doctor at the time, did not consider type one and and I remember someone suggesting to me based on my symptoms that maybe it could be type one. And so of course I started reading online. And I think when on some kind of a high protein, low carb diet, just combat whatever possibly could be going on in my in my diet. So when I took my, you know, fasting blood sugar for the lab studies, it wasn't an incredibly high, but it was high enough that it was definitely within a diabetic range. So the doctors put me on oral medications to start with and I had really good results again, I was still eating pretty low carb at that time just out of fear trying to deal with what what might be going on. And then I started trying to go back to my normal lifestyle and the oral meds just really weren't working anymore. And it was a diabetes educator who said to me, I think you might have type one. So when I was initially diagnosed again I was I just happened to be visiting my family. I came home from college, visiting my family, they took me to the doctor, he said, we think that you have diabetes again, thinking it was type two, we had planned a trip to Spain, and we were leaving the next day. So he said, go to Spain. Have fun, and let's deal with this. When you Get back
Unknown Speaker 10:03
in Spain cry.
Unknown Speaker 10:06
This is so much fun. I
Unknown Speaker 10:09
really love this place. Oh, look, it's
Scott Benner 10:15
so delightful advice. Go to Spain. Forget I just told you you have a lifelong illness, take some pictures and come home and then we'll just work this all out later.
Unknown Speaker 10:27
Oh, that's good. So here's a wonderful doctor, but it was just you know, at that time
Kelly Griffin 10:32
at the food, you know, I was afraid to eat. I didn't know what to eat. You know, I'm just, it was it was an interesting vacation. So anyway, like I said, as the month progressed, the oral meds just stopped working that Metformin you were taking, you know, Scott, I think that that was part of it. But I remember something, something else, kind of a 24 hour medication, whatever it was, I don't want to guess I don't say it wrong. But I think Metformin came along a little bit later. Okay.
Unknown Speaker 11:08
So,
Scott Benner 11:09
I'm sorry. So this was based mostly on just the fact of how old you are like they didn't want to believe at that point that you could have type one because you're in your mid 20s.
Kelly Griffin 11:18
I don't even think it occurred to anyone. It's interesting. So yeah, when I was told I had diabetes, I thought it was type two. So I was trying to manage it through the oral medication, diet, exercise, all of those things. And like I said, What a diabetes educator said to me, I think that when you go back in New York, you ought to have them look into type one. So I found an endocrinologist when I came to New York, and he ran some lab studies and said, Yeah, you know, it's, it's type one, and I was immediately put on insulin
Scott Benner 11:55
timeframe between when you first when someone first had diabetes to you when they said type one, how long were you doing the oral meds and everything?
Unknown Speaker 12:03
I would say? Maybe four, five months,
Scott Benner 12:09
and you were probably honeymooning and you were eating low protein. So it's Yeah, it's holding it together a little bit. Yeah, exactly. Exactly. But,
Kelly Griffin 12:15
you know, the low carb thing for me only lasts a short while and it's like, okay, you know, at some point, I need to begin to get back to my normal life. And so when I started incorporating, you know, just regular foods into my diet, it just became more difficult to manage with those oral medications. So yeah, well, you
Scott Benner 12:38
know, prior to insulin, if you if you got type one, they would just did pretty much go on a starvation diet and run around a lot trying to stay alive.
Kelly Griffin 12:46
That's right. Yeah. And, you know, that was another thing that, I think because of what I looked like, at that time, you know, I think that at that time, they were associating type two with, you know, overweight, sedentary, probably a little older. And that's what the doctors were saying to me. And so they were even baffled that I would have type two as they thought I had, because with the diagnosis of type one, Scott, I probably lost about 20 pounds. Yeah.
Scott Benner 13:17
So even though even the overly simplistic visual cues for type two didn't apply to you,
Kelly Griffin 13:24
right? Because, you know, he, he didn't really know me. He was not my family doctor, I was visiting my family and seeing a doctor that really didn't know me. And you know, when you're young you think you're invincible. I didn't really establish care with with a primary doctor. So no one really would have known Hey, she lost 20 to 30 pounds. Maybe we ought to look into type one,
Scott Benner 13:48
especially in your I mean, in your 20s that's a time when you just I mean Invincibles even too It's too soft of a word.
Kelly Griffin 13:57
I thought I'd do it school. I got a little stress. You know, I'm not eating as much though. Yeah, sure. I'm gonna lose weight.
Scott Benner 14:03
If I lost 20 pounds right now. I'd be like, finally, the universe is looking out for me. Do you stop?
Kelly Griffin 14:09
Yeah. It's so funny because at the time that I was so tired, so lethargic, I was drinking soda all day because I don't drink coffee. But I will drink a soda to give myself caffeine. Now of course I was drinking regular soda at that time, but why not? I'm so thin. It doesn't really matter.
Scott Benner 14:35
You know, when I was growing up, my parents had friends and the husband was like a rail skinny real tall arm real thin. And his wife was kind of around and chubby. And she's alive in her 70s he died 25 years ago from a heart attack and but he was always that guy like real skinny could eat a whole pizza was still real skinny. Yeah, and and then always thought of his health as his weight which is interesting because there wasn't that much of a correlation? And it ended up being the wrong way to think about it. But if we do that, I mean, I would do that too.
Kelly Griffin 15:07
Yeah, I was so sick. I've never been sicker. But I thought, well, I'm dropping all this weight. This is fantastic.
Unknown Speaker 15:17
This time
Unknown Speaker 15:21
I find
Scott Benner 15:22
another college, I'm going to jump into the real world thinking about going up to Manhattan is a real This is beautiful. And so know. Exactly right. The plan was, yeah, sure. Right, that really went through. What was the first way they gave you to manage? But did you get like syringes? Or what was the deal at that point? Guess what, we have a dexcom g six continuous glucose monitor just came the other day. Dexcom started their shipping with 1000 units. They went to people like you know me with the podcast, and people like you, who just saw them online saying who wants to be first to give it a try. Now, if you didn't see that, don't worry, the rest of them are coming really, really soon. If you're a current g five or g4 user, and you'd like to go to G six, Contact Dexcom today, give him a call and be like, Hey, yo, what's up? Next time I am ready for a reorder, I want to move to G six. And they're going to help you do that. When you call tell them hey, I heard on the Juicebox Podcast that the Dexcom g six is like gonna shift like any day now. Is that true? How do I get involved. But if you're not a Dexcom customer currently, but you're listening to us on the podcast talking about using this continuous glucose monitor that we love so much, and you want to get started, go to dexcom.com forward slash juice box, and Dexcom will help you get going right away. Now you may be thinking, Scott, why do I need a dexcom continuous glucose monitor? Let me get in real close. Let's Get Real intimate. Let me explain it to you. Real, real nice. Because you do It's fantastic. It's amazing. You want to be able to see your blood sugar, where it's going how fast it's moving on to be able to make treatment decisions. Yeah, you do. You want to be able to say hey, my blood sugar starting to fall, I should maybe have a small snack, hey, my blood sugar starting to go up. Maybe I could bump it with a little bit of insulin here and stop a high blood sugar later. Of course, you want to see that. You want to see the speed and direction that your blood sugar is moving in real time because it's an amazing way to manage your type one diabetes. Oh my gosh, I almost forgot to tell you last week I said I was gonna tell you about the share. And then I didn't normally do it again. Party. I'll extend the music Hold on. All right, next one. This is free bonus add time, the share function on Dexcom means that you are a loved one can wear the dexcom continuous glucose monitor, while people you choose out in the world can follow your blood sugar on their Android or iPhone device that come on. Wouldn't you like to know what your kids blood sugar is right now wherever they are. Or maybe you're an adult living alone, who just wishes that somebody could have their back in a moment of emergency, you would have the freedom to set up a follower anywhere in the world. And you could set their alarms wherever you wanted to. Maybe you just want them to know when your blood sugar goes below 55 because you're hoping they could, I don't know give you a call three a text message. Hey, all right. There are limitless ways to use the share function on the Dexcom you will find the way that fits your life best, but trust me, it applies in some way to everybody. Go to dexcom.com Ford slash juice box. They'll start today. And I hope you're as excited as I am about the newest version of Dexcom, the G six which like I said, we've just started using, I'm going to have a pretty extensive review for you as soon as I can. But first I got to absorb it, use it. Make sure I understand what I'm telling you. I'm not just gonna jump on here, but like it's great by it because I don't know. I don't know yet. But I'm hopeful. And what I see so far is really, really great. All right, let's get back to Kelly. What was the first way they gave you to manage? What did you get like syringes or what was the deal at that point?
Kelly Griffin 19:09
Yeah, I had the I think the first insulin that I was on was the Oh gosh. What's the one with the peaks and the valleys?
Scott Benner 19:20
humalog novolog
Kelly Griffin 19:22
24 hour insulin. Oh,
Unknown Speaker 19:24
geez.
Unknown Speaker 19:25
Oh, okay. You were doing
Unknown Speaker 19:28
regular and mph? Yes, yes. Yes. Yes.
Kelly Griffin 19:33
Yes. So I had some peaks I remember throughout the day, but that was very short lived. And then I went on something like a 24 hour I think like a Lantus or levemir. And then I would just do regular through the pens.
Scott Benner 19:51
It's interesting how it's changed so quickly.
Unknown Speaker 19:53
Oh, yeah.
Scott Benner 19:54
No, I remember when my friend was diagnosed when we were in our late teens, he was just like, I just have to take the shot in the morning and then at night before thinner. And I was like, That's it. That's it. That's it go. Okay. And he lost weight too. So he was like, This is great.
Kelly Griffin 20:08
Yeah, I'd be curious to know that a one see results.
Scott Benner 20:11
Yeah, it wasn't good. But that's what he was told. Yeah, you know, and in your late teens, a doctor said, do this, it's already stressful. You're not looking to dig deeper. I think. I think I still see that now with people, right? That you do Really? You want your life to be simple? Everyone does. It sounds it's obvious, right? And so if someone says this, we'll do it. But then there's a pause. And in your mind, you think, I don't think that's right. But they did say it was, so I'm just gonna go with it. You know, like, there's that go with it. So that I don't have to think about it anymore. Feeling.
Kelly Griffin 20:45
Right? Yeah. And it's so important, you know, for platforms like this, because although you're saying, you know, I'm not giving advice or anything, you know, but has to take control, I think anyone will tell you, you have to be your advocate, you know, you have to read up, you've got to study, you've got to know what's happening with diabetes, technology, all of these things, because you may go to a doctor who promotes one pump over the other or one CGM over the other or one way of managing things. But if you go in with the information and say, I choose to do it this way, and no one can argue with the results when they see your numbers, then, you know, I think that's the most beneficial thing that you can do. But you really have to take it into your own hands. Like, you're always saying, You can't wait three months for your next doctor's appointment to adjust your pump settings, and
Scott Benner 21:44
just talk to somebody on the phone yesterday. And I said, Look, you just have to bump them around yourself. Yeah,
Unknown Speaker 21:48
you can't.
Scott Benner 21:49
I mean, can you imagine it could take six to nine months to get it? Right? Right. In that time, your blood sugar is high the entire time or in this situation? It was her daughter. But I think that I think that you, you know, to go back to that idea of it's it isn't fair, right to get diabetes isn't it's not fair. It shouldn't be, it's not what you were expecting, it's how you're planning. It's not how you were living prior to then. But at this point, now you have this part time job, that's really more of a full time job. And, you know, it's it's a part time job that you do from home. So you're really at it 24 hours a day. And and it's and you have to you can't just say, well, this isn't what I wanted for my life. So I'm going to ignore it. That's, yeah, that's what you do with a weed that grows in your backyard, but you don't have a way to cut it down. You just don't look at it, you're like, that thing will die when it gets cold. And you look away, you know, but this doesn't this doesn't go away ever. So to not take and to not take an active role in it is it bends my mind a little bit. But But I think of it that way. To go back to what you said earlier, because I'm taking care of a person that I love. Yeah, it's not me. There are plenty of things with my health that I ignore all the time. You know, like, I'm walking down the steps for the last week and my ankle clicks in a way that I'm pretty sure it's not okay. And so far, the way I've handled it was to think that'll stop.
Unknown Speaker 23:06
Yeah.
Kelly Griffin 23:08
put things in perspective, though, right? When other things come up. And people say, I know this is going to be an inconvenience for you. And I'm thinking you have no idea what I deal with on a daily basis. This is nothing.
Scott Benner 23:21
I do like that when I see people freaking out around me. And I'm like, what's wrong? She's the photographer we had for my son's senior portraits backed out of us. I was like, oh, and this is throwing you into a tizzy as I call another one.
Kelly Griffin 23:36
For a lot of things that and I don't think anyone really knows it unless you are living with it or helping someone else to, to live with it
Scott Benner 23:46
and no way to know. Right? Absolutely. Okay. So here we are. We're in the world. And we are working and you see business, you're involved in classical music, you have a lot of things going on. But you but the first time you and I really started speaking, if I'm remembering correctly, and because I do literally no research for the podcast. I don't know for sure. But if I'm remembering correctly, you were as an adult, in your workplace not sharing with people that you had diabetes, is that
Kelly Griffin 24:14
right? That's right. Yeah. When I would perform. Right, right around the time of my diagnosis. I shared it with some close people who were in business and also in, in classical music, you know, it's like, how do I handle this? Because even though I feel I have good control over it, somebody maybe should know, because God forbid something happened. I don't want to be isolated in this and then I also my mother hates this that I that I won't wear a bracelet or or something. I have Something in case I'm ever in a situation that I feel it's important to put it on. But I've got I just don't ever want to be visibly. Ill I hate to say that, but that's, you know, I just want to go about my life. I don't want people saying, Oh, you know, what's that? Or what's wrong? Are you okay? And that was always a struggle for me. So it was recommended to me, especially in music, that I just not talk about it. So I thought, okay, if I'm getting this advice from people that that I know, have my best interests in mind. It's probably correct, I should probably just keep it to myself. I wasn't in any way ashamed of it. You know, it's just, I didn't want to be treated special in any way. You know, I didn't want anyone to have to say, let's take a snack break for Kelly. No, I
Scott Benner 25:58
think I completely understand. I mean, it's just, it's no different than anything else. You didn't want to be singled out or treated any differently than anybody else. You're not looking for the focus to be on you all the time. Or for you to be a an easy excusive if someone else needs it, right, you know, cuz you, you do run into those situations all the time. So the other day, Arden comes home. And she says, I don't think my science teacher understands the diabetes all that well. And I was like, what's wrong? And she said, uh, so Arden needed to leave the room, or no, I, you know what, here's the exact scenario, her blood sugar was drifting low. But it wasn't falling. And she was gonna get on the bus soon and come home. And she always has a snack when she gets home. So I didn't want to over treat this drift. And so I said to her, Hey, are you in a room that you have like supplies? And she always does. She's like, yeah, I said, have like a couple of like, she's some candy aside, I think she had like, Mike and ikes, or gummy bears or something like that. I said, have a few of them. And so she gets up because she's allowed to move around the room for that stuff, walks over to the cabinet. Looks in the cabinet. The teacher must have moved the stuff a little bit. And so she asked the teacher Hey, where's my bag with my candy and my juice? The woman says, Oh, it's right here. Arden grabs like a few pieces of candy. She throws it in her mouth down. But now the teacher stops. Are you okay? And our arms like, yep, I'm good. Just gonna, I just needed a couple pieces of that candy. I'm gonna go back to my desk now. Right now she was fixated on her. So now 10 minutes later, she comes up to her and she's like, are you sure you're okay? And when it's like, I'm really I'm fine. But thank you. And then it goes a little further than the class ends. And she comes up to her and she goes, I knew something was wrong, because you're pale. And I said, Arden goes, I don't look pale. I don't. And I think, you know, it seems like but I didn't know what to say. And I said, Well, thank you. I appreciate you being concerned. And she left her alone. Then she comes home and tells me I said, Arden Listen, you've never gotten pale once in relationship to your diabetes, this woman's now just she's talking herself into seeing something.
Unknown Speaker 28:00
Yeah, of course, it's out
Scott Benner 28:02
of a real concern. Like she's not a bad person, you know, but look at all this that's going on around Arvind that she doesn't want. And that's the stuff I'm assuming you were trying to avoid.
Kelly Griffin 28:13
Exactly, especially in a performance situation. I'm, there's already so much else that I have to worry about. I don't want anyone worrying about me, you know? And in a way because no one ever has worried about me, you know, my parents are very aware of what's going on, but they've never been responsible for taking care of my diabetes. So even when I'm visiting them, if, if something happens if I have a low blood sugar, the dexcom starts beeping or whatever, you know, no one's running over. Oh my gosh, oh my gosh, are you okay? Like, you know, my dad's a physician actually. And so you know, he'll just kind of look at me and he'll say you need something you need to handle something is something must be happening right now. He doesn't know the difference between the beeps you know, to is this for is that he doesn't know. Obviously
Scott Benner 29:13
Kelly I check the remote and the batteries are good in it. So I think I think you're beeping and do something about it. Please wait, isn't that that must be that must be incredibly difficult for them. Like, you know what I mean, like to have you have left the nest in a way and then for something so impactful to happen to that they couldn't be involved in. It must it must break their heart on some level like Do you know what I mean? Like not being able to Yeah, for sure. It's not really spoken about but I can imagine it from my personal Yeah, it's interesting.
Kelly Griffin 29:44
It really we talk about it, because I talk about it. You know, I especially when I started listening to the podcasts and you know, I went to friends for life. I was like, you know, I am going to meet another type one diabetic person or person with it. DVDs or whatever we want to be called now, I am going to meet one, I will find one. I know there's another one out there. Because, you know, for many, many years, I was the only one I knew that had type one. So that was quite, that made quite an impression on me to go down to Florida and meet all of these people, especially, you know, the adults who were living with and have been living with for much longer than I have, you know, type one, and it's just, it's really, really amazing. But I remember when I initially got the diagnosis now, this was when they thought I was tight to my mother was in the room with me. And I just being a kind of a dramatic person anyway, just burst into tears. And, you know, the poor doctors kind of got his hand on my shoulder, you know, like it. It's okay, it's okay. And then, my mom, I've never seen her look more stoic. But in a way I could also see because I know her. She was fighting back tears, but I think she was trying so hard to be strong for me to say, it's fine. We're just going to find a way to deal with this and we're going to move forward. But I've never seen her on the edge of crying like that.
Scott Benner 31:24
Yeah, it's it's a it's not easy to describe that feeling then something happens to your kids that you can't help is Yeah, it's on its way past helpless it It feels like soul crushing. It feels like, you know, it's I'm way more than just somebody's parent. But at the core if you made me cut things away from my life, and only make me one thing I would choose to be our Nicole's father. Yeah, it's just it's a tough, it's a tough situation to be put into.
Alright, on the pod, listen, you're just getting a regular length fad today, not like the super ad Dexcom got because they came out with something really cool and new. Get your dash out, I'm gonna give you a nice long ad as well. But for today, you don't need long you just need true. And you know what's true tubeless insulin pumping rocks, it is fantastic to be able to get your insulin when you want where you want without having to disconnect while you're swimming, or showering. Or, you know, maybe being friendly with a friend. You don't have to disconnect for anything, you can keep your blood sugar right where you want it all the time constantly. Without any nasty tubes running around in your clothing, or hanging out of your sleeve. You don't have to take the pump and jam it in your bra or on your belt. It is not 1975 I don't want something hanging from my belt. This isn't chips. That ain't my radio. I don't know what that means. But I do know that the Omni pod is, without a doubt the greatest insulin pump that I've ever seen. You go to Miami pod.com forward slash juice box to get a free no obligation demo. Now think about that. A no cost ain't no risk. You just give them a little bit of information about yourself. They'll send you out a demo pod. You can hold it, feel it, touch it, see what it's like and then you can apply it to your body and wear it and get the full experience before you decide. You know what that Scott God was right on that Juicebox Podcast? I should get the Omni pod. My Omni pod.com forward slash juicebox are the links in your show notes. Where the links at Juicebox Podcast comm start today. You will be very happy to eat it.
friends for life you went to friends for life to find other people who have type one diabetes. Yeah, he talked a little we never really talked about that here. I guess. I always assumed one day I'll just do the podcast from there. But I never really I don't know. I haven't worked towards that at all. But is it? Is it as trance wasn't as transformational for you as other people describe? It was? Is it just amazing to just settle into a place where these people are as natural and is free and comfortable as you feel in your own life except now there's others around you.
Kelly Griffin 34:17
Yeah, it was interesting to see how how people live differently with this. So adults that had you know, I wear an omni pod. And so I would see adults with an omni pod on the back of their upper arm, you know, just hanging out, you know, it's Orlando, it's hot. You're wearing short sleeves and there's your Omni pod. It would never occur to me to have an omni pod visible. You know, I'm always trying to find places where it can hide. So I just thought that was so fascinating. And it's like, you know, you go to work like that you you go and out in life, and I was so impressed. You know, that's, that's just amazing. And just to be able to talk to people, I think that I was already doing things as far as technology was concerned, there was nothing there. I tried a couple of other pumps when I was there, you know, they have demonstrations for you, they'll let you take a pump for 24 hours or something just to wear with sailing. And I did it and you know, I walked away kind of knowing nothing's gonna take me away from my Omnipod.
Scott Benner 35:30
Delightful with all the rubber tubing.
Kelly Griffin 35:33
You know, it's like, I'm rolling around at night, I'm getting caught and stuff. I'm like, Okay, this is not gonna work for me. But it was good to try. Because I had talked to people who said, I can't understand how you could wear an omni pod. Why don't you try this? Or why don't you try that. So I wanted to see what it was about. But I like that there are things for every lifestyle, everybody has different needs. And so that accommodated my needs best. And but just meeting the people, I have people that I am still in contact with today that I met at friends for life. And it's just nice to know that if I need to reach out or if they need to reach out, there's a whole community out there. And most of it, I'm finding online now they're the Facebook groups and or podcasts, you know, and you can really stay well informed and feel that you have a connection.
Scott Benner 36:31
I don't I don't know how people do it otherwise, because in real, you know, in real life, where are you going to? I mean, how do you even have time for that? Right, like right now. Now, not only is diabetes that says but I'm gonna say something, it's gonna sound counterintuitive, but not only is diabetes, taking up some of your time. But now I have to go to lunch with people who have type one diabetes, or make special, you know, movie trips, or, I mean, not that that wouldn't be great, once in a while. But when you need that feeling of I don't know, if it's camaraderie or just not feeling alone, you need it, you need it when you need it. You don't need it next Saturday at 11 o'clock in the morning, like, right, you know, so it's great that it's available. It's amazing that you can click onto a Facebook page and be like, wow, everyone here has diabetes or know somebody that does it. It's immediately everything I say is understood. There's no you know, the shorthand works. Now, I don't have to long explain things. This is this is this is an amazing thing to be surrounded with. And at the same time, you can walk away with it from it when you're done.
Unknown Speaker 37:34
Yeah, yeah.
Scott Benner 37:34
And you said something earlier about seeing how people do things differently with diabetes. It is really, it is interesting that it's, we all do things differently in our lives, but most of it's not visible. Right. Like, I mean, like I can't I don't know if I can think of something off the top of my head. But you know, the the pattern that my day takes is the pattern that I've set up. And your day probably takes a different pattern. And if we really watched you and I you'd be like, well, Kelly and Scott live very different lives. You know, I mean, they she makes different decisions about this. Now he does and everything. But when it's the diabetes, when it's a pumper, it's a CGM, or it's you taking an injection, it's out in the open, and you can really go wow, that person does this. I never would have thought to do that. Right. And you kind of build your perspective. And then you can adjust or an or, or do what you did and sit back and say I'm really comfortable with what I'm doing.
Kelly Griffin 38:28
Yeah, yeah, there was nothing that I needed to change. I was out. I think the most thrilling thing for me about friends for life was getting the updates on the artificial pancreas systems. I think that was the most exciting thing that I wanted to hear. And that was, you know, they had sessions and seminars, and I loved all of that. So yeah, very
Scott Benner 38:50
cool. I have to I mean, I just put up, you know, by the time this goes up, it'll be months ago, but I just put up a new interview with the CEO of the president of Vimy pod, and she talked about everything they have in their pipeline, and one of the things was their horizon system, which is there.
Unknown Speaker 39:07
Yeah.
Scott Benner 39:08
And it's just she's talking about this is great. You know, like, this needs to be now Can this be now and then, you know, well after we do this and this the FDA says okay, and you know, like yeah, in a year or so,
Kelly Griffin 39:20
you're like like great interview I did you listen? Well, it was very timely, of course, because of the is it animus that that closed? That is close?
Scott Benner 39:30
Yeah, that was dumb luck. If you are somebody who's listening to this now and listen to that back then, I was supposed to interview Shea see from ami pod, I'm gonna say two months ago and throughout a screw up on my end, it didn't happen and then when we just rescheduled it for when it fit again. And it happened to end up being like a handful of days after atomists said, we're not making insulin pumps anymore. So the timing of it just sort of worked out as far as the information being really kind of important in the moment. I
Unknown Speaker 39:59
Yeah,
Kelly Griffin 40:00
yeah. And I, you know, been reading about some of this and, you know, some of the blog posts that people have been putting up, you know, and how it's really important for us to have competition in the marketplace of pump systems because, you know, I, somebody asked me, Well, what would you do if if they didn't make Omni pod anymore? Well, I got I don't know that I could go to a tube pump. I think I might try to find a way to make MDI work again,
Scott Benner 40:32
that's interesting. No, I think it is definitely one of those pieces of technology, that it's difficult to train. I don't I'm not I don't mean to be insulting if someone's wearing a tube pump, because if it weren't, for you, it's wonderful. But it's a walk back, right? You know, when people look at the on the pod that were tubes, what they think is, oh, it sticks up off my skin, I have something that's attached to me, that's, you know, bigger than the thing I have attached to me now, which is, again, perspective is, you know, there's something something on your skin that's a little bigger or something on your skin that's smaller that runs around with 19 feet of tubing to something that's bigger, like, what's the something's attached to something somewhere? Yeah, you're not getting away from that with an insulin pump anytime soon. And so, you know, any but the lack of the tubing and the not disconnecting for activities and bathing and things like that, to me is kind of like I, you know, I'll walk you know, Arden's getting older now, but she get a shower, and you kind of wander into hand or something, and this pump is sticking on or, you know, wherever she's got it, and she doesn't know it's there. Yeah, you know,
Kelly Griffin 41:35
you forget about it. I think there are a couple of times recently that I've noticed, oh, it would be nice to be able to detach, like you can with a tube pump. But I think overall, this is working out best than if I'm backstage doing a costume change or something. That was that was my thing. That was why I would never go on a pump because my endocrinologists were always telling me about the pumps with tubing. And I said, No, no, no, no, I'm not going. And you know, doing a costume change with this, because then it's going to, I'm going to have to explain it, you know. And with the Omni pod, I just put on, you know, a camera Sol, and maybe some bike shorts or whatever. And I just wear that under my costume as most women are doing. No one even knows it's there. And if I've got to do a public costume change, there's there's nothing to worry about. I
Scott Benner 42:33
don't have to have those conversations, though. Yeah. So I have a question. I have a question you so you listen to the show. Did you ever hear Episode 71 called 14 going on? 50 with a kid named Ian. Who?
Unknown Speaker 42:47
I'm sure I did. Yeah. Is it is
Scott Benner 42:49
it is a student and an actor?
Kelly Griffin 42:51
Yes. very mature young man.
Unknown Speaker 42:53
Yes,
Scott Benner 42:54
yes. Okay, and what's up? That was the best. And so an Ian was, was his fear was if he let somebody know that he had type one diabetes in his performing life, that they may just not let him have jobs.
Unknown Speaker 43:09
Yeah, absolutely. And
Scott Benner 43:10
do you ever think of that?
Kelly Griffin 43:11
Yeah. And that was my initial thought, you know, I mean, forget once you get the job, how you're going to be treated? The question was, are you going to get the job? Do they understand enough about type one, to know that you can do the job? You can do it? Well, and you know, no one's going to have to stop the performance for me. You know, I will take care of this in such a way that it will be fine. And I don't know that everyone has that information. Oh, they know.
Scott Benner 43:41
Yeah. Well, and rightfully so we talked about our way there's no real
Unknown Speaker 43:44
reason, no reason for them to know.
Scott Benner 43:46
Yeah. But there isn't a there is. And this is something I always I feel badly when I see people get so upset about oh, this person said something unfeeling, or they didn't understand this. And I'm really angry. I'm like, you can't, there's 1000 things about their life, you don't know, you just we're not talking about it and that you shouldn't be. Listen, nobody should be saying anything stupid. But in a world where I'm pretty sure someone's gonna say something stupid,
Unknown Speaker 44:11
right?
Scott Benner 44:12
Where I'm pretty sure someone's going to say something stupid, it's reasonable to think that they're going to say something stupid about your disease that you they don't know anything about, they're going to take some sort of what seems to them to be intellectual leap and they're going to make a mistake or they're going to rub you the wrong way or whatever it's going to be in your regular life you can speak up and stop them but in your but in the moment where you're performing. And then somebody has to pick between you and a bunch of other people that diabetes very well could look like. Just one more thing for them to worry about.
Unknown Speaker 44:45
Yeah.
Scott Benner 44:46
And so it is completely reasonable. Not to not to let them know and at the same time I'm I advocate on here all the time for just being completely open with it and you know, then just landing wherever you fit, but If you're looking for a job, you can't you can't go to 35 performances to find the, you know, the 10 people who actually like what you do then to find the one that doesn't, you know, think your diabetes might be a problem. That's Yeah, that's untenable. You know?
Unknown Speaker 45:13
Yeah. Yeah. You know, it
Kelly Griffin 45:16
hasn't been a problem, Scott. I mean, of course, I don't walk into an audition and say, Hi, I'm Kelly with the type one. But no, I it's just never been a problem. And I find that, you know, when I am in performance, I will have a discussion with the stage manager, that's the person I usually go to and say, Look, this is my situation. Because, you know, oftentimes, there are rules backstage, no eating and costume. No food beyond this point, you know, that kind of thing. And so, before I get in trouble for, you know, having a snack or taking a sip of juice and costume, I will say, you know, look, I have type one diabetes, I will then give a short explanation of what that means. And generally, when I say insulin pump, their eyes get really big. And it's like, Okay, this is something more significant than I might have thought about that. Yeah. And, and I've never had anyone say to me, okay, so you're going to have to take your costume off before you have a sip of your juice. You know, it's,
Scott Benner 46:25
it's why is Kelly naked in the corner camisole? Well, her blood sugar's low. And she's not gonna get a stain on that costume. Well, you know, it's funny, I've said this, a couple of times, Arden's played softball for the same bunch of guys forever. And as much as they would tell you, they understand she has diabetes, they don't understand. They just, they're aware of it. And they think they know something about it, but they really, they sort of don't. And so when you explain it to somebody, you know, you have the time to sit down and thoughtfully be clear about it with them. It's not a problem. Here's the thing you you joked about, I don't come in the door and say, Hey, I'm Kelly, I have type one diabetes. Yeah, if you do that, and someone is put off right away, be clear, they're probably not put off by the diabetes, they're probably put off by the fact that you're crazy. And so right, that you've launched in the room yelling about your disease, I have diabetes, and if you don't like it, and belanja, I'm gonna have to do this. And they're probably like, oh, wow, I don't care about the diabetes. It's you I don't like Yeah. And so that is, you can, I've had that feeling where I've been advocating for Arden at school. And I wrote about it at one point, because I realized, I'm like, Oh, my I sound like a lunatic. You know, I'm only saying the things that that apply, but so much of it applies. And there's so many buzzwords and things they can't absorb. And I'm just saying them one after the other. I can't do this. Because because I'm going to be the nut. I'm going to be the nut parent, they're not going to ever listen to me again. You know, even though what I'm doing is not crazy. It feels like that to the other person. Right?
Kelly Griffin 47:59
You have to be cautious, and you've been living with it for so long. I mean, don't you find that even within the type one community, you might say something? And excuse me, if somebody's not familiar with it, then they may not even know the terminology.
Scott Benner 48:16
What happens when I get notes all the time? You said this? What does that mean? Yeah. And I'm like, okay, and I get it, because, you know, I was just having this conversation, Callie last evening with with my person at on the pod who, who might kind of liaison for these ads and things like that. And I said, you know, that the Thai the diabetes community online is like, it's like shedding a snake skin. And she's like, What do you mean? And I said, new faces, they come in, and they last about six months. And then most of them go go, they've absorbed what they need. And they're on their way, which I think of as being beautiful. Like it's just I came I didn't know something, I know it now. I'm going to go back to my life. Some people stay behind and try to dispense wisdom to the new people coming in. But for the most part, the bulk of the people are new, and they're either lost and looking for answers are so new to diabetes. They don't even have time to know if they're lost yet. Yeah, right. Right. And those people are as as what's the word I'm looking for? They are as a result, they're as much of a raw nerve as they will ever be in their life with diabetes at that point, and the tiniest thing could send them over and think like why are you speaking to me like this? Why would you say somebody how come you can't be more feeling and it is, I see it as being is a kindness to sort of relax and Excuse me, I'm getting a phone call. This is odd. Go with a sorry, I can't talk right now button and see what happens there. It's just a it's a bad time for them and they need other people to be understanding of that. Yeah, you know, and at the same time, some People take that anxiety and do a really weird thing with it, they they don't, they lash out. It's just a fascinating time in your life where nobody can really say anything to you, that's going to be comforting. And it is very easy to to get upset about almost anything. So right being around other people who understand you is maybe the most important part.
Kelly Griffin 50:20
It really is. And, you know, think thank God for this online community. I, you know, I found the Omni pod online, I remember when my endocrinologist was telling me, I want you on a pump. And I said, No way. I'm not wearing, you know, one of the models that I saw, and I just started looking online, Surely there's something else, there's got to be something else. And then I saw this tubeless system, and I'm thinking, Oh, you know, maybe I could do that. And there was pushback. But because, you know, it wasn't something that the office was that familiar with. Yeah. But, you know, they work great.
Scott Benner 51:03
It happens a lot happened to me. And it's happened to countless other people, where they just they don't know what to say. So they start saying other things. Yeah, I just saw a person just the other day, say, you know, I don't want to I don't want to cause you know, anybody an argument here online, but my endo told me that, you know, at six years old, it's not a proper time for my daughter to use on a pod. And I was like, what does that mean? Like, that's a meaningless statement of you know, but you know, too thin. I've heard him say, You're too thin, you're too chubby, you're too this You're too that you need your needs or this or that. It's all just, it's all nothingness. But you know, like, it's just it's it's their hang up or their excuse, because like you said earlier, maybe they maybe the maybe the practice pushes another pump for some reason, right? Maybe it's easier for them. You don't know what the reasons maybe they have a cable in the back that hooks to a Medtronic pump and downloads your information and they don't have the cable for the on the pod PDM. They're like, Well, you know, Medtronic is better. You don't know why people so Yeah,
Unknown Speaker 52:03
exactly. Exactly. It's
Scott Benner 52:06
a there's a lot of difference. So always advocate for yourself and do the research and, and be proactive is it's it's amazing advice, actually. Okay, so you said you you're I'm let's talk about you for a second. You said you're involved in classical music. I my favorite. Here's something nobody knows about me. I guess. The unaccompanied cello is my favorite music to listen to just Hello just by itself. That that is the if you want to see me cry, take me somewhere where someone's playing a cello. And then I will cry at some point. Because it hits me so incredibly, just deeply. What do you do? What is your when you say you're involved in classical music? What do you do? Can you be more specific?
Kelly Griffin 52:50
soprano I sing opera. Well, you have a wonderful young person, right? Who Who does your music for you?
Scott Benner 53:41
Yeah, music for this podcast was written by by a person who was nine years old when they wrote and recorded it and everything for me.
Unknown Speaker 53:49
Oh, that's fantastic. I love that name.
Scott Benner 53:51
Sydney. Yeah, she did a great job. I don't know if I mentioned that long time. When the podcasts first started, I could only kind of look into the world of diabetes to tell people Hey, I'm starting this thing. And her father Rob worked for works for Roche. And I had met him a long time ago, and just a very musical family and, and I knew about his daughter, and I said, Hey, do you think Sydney would be interested in doing this? And he was just so excited, like, I'm gonna pay her and he was like, Oh, okay. And, and she was just really thrilled. And I thought you did a great job. And if sometimes you think about like, Oh, I should change it. And I'm like, No, I like this. So, you know, just sometimes you just want to change things for the sake of changing and I guess but I don't know. I don't think about that as often as I as I did in the beginning.
Kelly Griffin 54:36
Now. You might lose some listeners if you open your podcast with opera. I don't know.
Scott Benner 54:41
You think that would just push people away? Would you do can I? I should I should get one of the ads and have you sing it? That'd be fantastic.
Unknown Speaker 54:51
That would be hilarious.
Scott Benner 54:52
For me for no one else like you. Like people would be like fast forwarding and throw it I'm like, No, this is wonderful
Kelly Griffin 54:59
to hear it and what like butter commercials that you know,
Scott Benner 55:03
Cindy, is most of your work on stage or do you? Do you get that kind of work do you do? Because in Manhattan, there's a lot of opportunities to do. Yeah,
Kelly Griffin 55:10
there are a lot of opportunities. Now my work is pretty much on stage. So it's really staged operas, concerts with orchestra or without and recital kind of work. So it's, yeah, it's all stage based work. Do you do?
Scott Benner 55:32
It's gonna ask if you find it fulfilling, but do you love it in a way that I wouldn't understand? Like, is it just a passion of yours? Or is it something you like? How do you how do you even realize you can sing opera? I guess is a great question. Well, I
Kelly Griffin 55:44
have a Yeah, that that came about quite by accident. I was taking voice lessons as a kid because I always wanted to sing. I remember, I was going to private, religious school and I remember getting an assignment. You know, what do you want to be when you grow up and find a newspaper or magazine article and write a brief synopsis? I was very young when all this was happening. And again, private religious, I found a picture of Prince. May he rest in peace and his scantily clad
Scott Benner 56:25
back up Ching, or is it Sheila E? Who was that?
Kelly Griffin 56:28
I think it might have been vanity and or apollonia. You go. Yeah, thank
Scott Benner 56:33
you very much.
Unknown Speaker 56:34
So you're not alone. By the way,
Unknown Speaker 56:39
Kelly, I'm
Scott Benner 56:40
gonna cut you off, there's a strong possibility this episode's gonna be called end or apollonia.
Kelly Griffin 56:50
Oh my gosh. So what I love about Okay, I have to say to my parents, thank you. Because I showed my mom You know, I always showed my mom my homework. And she was going to read through the the summary of you know, what I wanted to be when I was going to grow up. And so she called my father, he said, to take a look at Kelly's assignment. Because they didn't want to break my spirit. Because of course, I didn't understand that there was anything inappropriate about what I was doing. And I just knew I wanted to sing, you know, when I wanted to be on stage, and my dad looked at me said, this is very well written. And he said, if you want to be a performer, then maybe we should make sure you learn how to play an instrument, and maybe we should get you some dance classes. And, you know, so he just encouraged the basics. And I started taking voice lessons. And when I took voice lessons I was singing, like Bette Midler and Whitney Houston, and show tunes, and you know, things like that. And I think my mom came in on a lesson one time when I was again, probably a young teenager. And I was singing, I think it was something by Whitney Houston, that was probably inappropriate for a teenager to be singing. And she said to the voice teacher, can we find something else? Or Kelly to sing? You know, that's not so romantic in nature. Can we stick with something else? And shortly thereafter, I began singing art songs, which are, you know, classical music pieces, short selections, and, you know, school, enrolled me and in competitions and things and it was like, my own little thing that nobody else did. And it was, it was good. They kept me out of trouble as a year of our parents sense of propriety, actually led us sort of towards the type of media.
Scott Benner 58:58
That's interesting. Yeah. And when you're when your dad looked at that article, he looked at your mom and he was probably like, I think she wants to be a stripper. Look at this photo.
Kelly Griffin 59:06
And I wanted to, you know, what was funny was that I wanted to be Prince, you know, not not the to girl,
Scott Benner 59:13
I'm gonna go out on a limb and say we'd all like to be friends. Except for the fear of getting a life saving surgery because of his religion apparently is by the way, apparently what happened to him he was in a great amount of pain, because he wouldn't get a surgery because he didn't believe in it religiously. In the in the in the eyes of the idea of opening his body up.
Kelly Griffin 59:34
I've heard that and I've heard that the you know, whatever. overdose there may have been could have been kind of quite an accidental addiction, but who knows? You know, nobody knows
Scott Benner 59:45
that aside. I just want to say right now for the record, if anything will save my life. I'm up for it. And so that's it isn't. You want to be Prince? That's great. You have a like a big tall purple shoes or something?
Kelly Griffin 59:57
No, no, no, no, I just, you know, it was actually At that time, you know, the music was really, really big. And I just knew that I wanted to be a performer like he was. And, you know, you start taking voice lessons, and I realized that number one, my personality, and number two, my voice really aren't suited for pop music. Listen, if I could be Beyonce, I does stop singing opera in a minute. But like, it's just that's just not what I do. I don't think my personality would do well, I don't think that I know vocally, I don't think I would do well. And so you really learn where, right where you fit, you know, what's my, what's my genre? And that's classical music. That's what I do. That's excellent.
Scott Benner 1:00:46
I guess so opera doesn't get you a yacht is what you're saying?
Kelly Griffin 1:00:51
It can I think, or maybe, to, you know, opera isn't in demand as much as it was even 20 years ago. There was a time when I think probably the top 1% of opera singers were doing very well. And they probably still are. Yeah. But yeah, you do it at this point. Because you love it.
Scott Benner 1:01:11
Give me recordings that.
Kelly Griffin 1:01:15
Yeah, there are some things on line, I think. And I have some things that I use for auditions. I don't have a like a CD or something that I that I sell.
Scott Benner 1:01:28
We are coming up on an hour. So this has been very casual. And I was very careful not to talk too much. Because I got a scathing review that says I'm starting to talk too much on the podcast. Oh, said that's what the podcast is. Yeah, you should have seen me here. This is gonna go against the person who left the review. So hold on tight, whoever you are. I saw him in my I'm in. First of all, Joking aside. I like people like I don't I don't feel badly about the review. She still said she really likes the podcast, she just said that. I'm talking too much. And and I, I don't have trouble with that. I wrote a book. I'm completely capable of hearing people hate what I do. And I can keep moving. I'm not I'm not. I'm not bothered by that. You can't be if you're going to do stuff like this. But I was in my mid my kitchen, I stay away from it. Can you believe this? I look at this. And she sees it going on. I said, she said she loves the information that comes from the podcast, but I'm talking too much. And I'm like, I'm waving my hands around. Like the information comes from the talking. I said, I said I can't I can't, I started getting all like pretend agitated and messing around. And I said, isn't it interesting that, that I've crossed some sort of a line for like, you know what I mean? Like, she likes what she's hearing. And it's helpful to her, but I not delivering it to her the way she wants it delivered to her. And I thought I can you imagine if I spent my time trying to fine tune the podcast or anything I did in my life for everyone's desire?
Kelly Griffin 1:02:54
Absolutely not, there are too many people that are that are enjoying it and learning from it. And I think you know, not every EDM is for every person. And so that's why we have lots of different podcasts. And you know, lots of different people.
Scott Benner 1:03:10
I said, sometimes I don't talk very much at all. Sometimes, by the way, sometimes the guests will come on before we start recording. So hey, I'm really nervous. So I talk more to try to help them get comfortable. You want to kind of cover for them a little bit. I don't say that in the podcast, because that would be rude. I you know, and sometimes there have been people not very often I have to say, like one doesn't pop in my mind right now. But I know it's happened where you, you ask somebody a question. And their answers are very short. And this is an hour. Do you know, I mean, like something needs to be said. And so I start relating old stories or something like that, trying to get them to find, you know, whatever. Listen, yeah, here's my review of your review. There. What do you think of that? Now, I'm just kidding. The feedback was actually great. I thought about it for a while. I'm like, let me make sure I'm not. Because I am chatty. And we are from the northeast, Kelly. I start talking, I get faster as I'm speaking. You know, I heard from a guy the other day from Texas, and he was like, I'm just starting to get used to how fast you speak?
Kelly Griffin 1:04:09
Oh, wow. Yeah, I guess it is, you know, it's very individual. But that's the great thing about the podcast is that you have all kinds of people on from all different walks of life experiencing their diabetes in all different kinds of ways. And, you know, we're gonna find some people that we relate to a lot, some people not so much. And then some people like I was saying earlier and, you know, trying to hide things, you know, I'm much more open now. You know, again, not shouting down the street. I'm a family with the type one. But I mean, I'm learning that it's not such a big deal to live with this, you know, for other people to know that I'm living with us and it's a great time to educate.
Scott Benner 1:04:48
And you are having that feeling because of this community that you found. Oh, yeah.
Kelly Griffin 1:04:53
Because of the community because listening to the podcast, and especially listening to the parents, you know, I mean, Kids have no choice. They can't walk through school and pretend that they don't have type one diabetes and you know, discreetly just, you know, handle it on their own in a way that no one will ever notice. I mean, as discreet as you and Arden are, and her not having to go to the nurse's office and all of that people still must No, it just it is what it is. And as you're saying that I just texted Arden because I need her to test her blood sugar. So she's sitting in a class right now and she's gonna just pull her meter out or pull or PDM out and she's gonna test right there. And so
Scott Benner 1:05:32
yeah, yeah, so and it's, it's just unavoidable. Like, she just she's been drifting down while we're talking. And I'm sort of hoping that maybe the next comes off by a few points, and she's a little higher than it says, but she might not be and then it's thanks. We're gonna have to do a tiny correction 20 minutes before Pre-Bolus for lunch, but it is what it is, you know, so that's right. Yeah. But yeah, that's just it's a, it's a really cool to hear you talk about it, because you're not hiding, and you're not, you know, you're not having a coming out party for your diabetes. But at the same time, you found a really great balance between the two of them. And it's not something that sounds like you're impacted, adversely bite in either direction. It just it's like, it's, it's where your comfort level lies.
Kelly Griffin 1:06:18
Exactly. It's, it's no different for everyone. This is where I'm comfortable. I mean, look, I'm speaking to you about it on a podcast. So at this point, you know, I'm not terribly worried about it. But it's, it's been fine. And, you know, thank God, we have the technology, because, you know, I'm by myself and I rely on the Dexcom to be at night and I, you know, all of these things, and it's great that it's available.
Scott Benner 1:06:45
Now I agree with, these are the hardest episodes to end, because we're just so conversational, that it doesn't feel like there's an end point. So that I just have to be the one who yells, it's been an hour get off and
Unknown Speaker 1:06:55
found that it's up,
Scott Benner 1:06:57
you're done. Kelly with the type one diabetes, thank you very much for coming on. I love that you sing opera. And I can't wait for you to send me an mp3, any mp3 you want. I don't have to play the whole thing, even if it's just a little clip. And I'll just meld it in somewhere in the podcast. In here, if you don't want to, you know what if you don't want to keep that to yourself, and just send it to me anyway.
Unknown Speaker 1:07:23
I'll get you something.
Scott Benner 1:07:25
It's my it's my same advice for reviews. By the way, if you're really enjoying the podcast, leave a review. And if you're not, you're not Siskel and Ebert Keep quiet. That's all fine. Another podcast, not just mostly I'm kidding. But at some point, um, it's free people just like, I don't know, I guess they were trying to be, don't you think they were probably trying to be like, I really liked this podcast, I don't want it to get bad.
Kelly Griffin 1:07:49
It could be you know, maybe it was a listener who has been, you know, binge listening. And, you know, just had a
Scott Benner 1:07:56
couple in a row where I was chatting. Yeah. Well, you know, it's funny, too, if you're listening right now to the podcast in real time, aside from the one recently with the the Omni pod, President, these are things I recorded three months ago, like when somebody is listening to this, you know, you're going to be listening, my best guess is you're going to be listening to this in January or February, we did this in October, you know, because I can't be in a situation where I'm like, Oh, my gosh, the podcast has to go up, I quickly need to put one together. I don't ever want that to happen. So right, I record them ahead. So that so that they're always available. And you know, we've made promises to people about advertising and things like that. And so I'm trying to be responsible, but my life changes to, you know what I mean? Like, during times when I get on here, and I'm tired, and you speak more, or you're doing a great job, and I don't say as much or I think that it's more conversational, we go back and forth. Or it occurs to me to say something that takes five minutes to say, because that's how I think, you know, like, there's no, I'm not being long winded because I like hearing myself talk. I have found over my 46 years that this is pretty much the best way I I have to, to relate something, you know, I'll tell you one quick story, and then I'll let you go. But my son was writing his essay for college yesterday. And he is a very good technical writer. He is not a good creative writer. And this, of course, called for a little bit of both. And he finally said to me, can you look at it, I looked and I read and I said, Hey, the parts where you're writing about this flow really well. You seem really comfortable when you're writing when you get to talking more about how you feel. It's getting clunky. I said Come sit with me and I'll show you how I would do it. He's like, well explain it to me and I said, I can't like I genuinely, I don't know how to explain it to you. Well, you know, I said but I can do it. You can watch me. I'll do it out loud so you can hear and you know, and then just take from it what you will and we sat down for it. This is gonna sound crazy, but I guess we sat down for about two hours. And we wrote and edited and wrote and edited together until I started feeling him speaking words over my shoulder, that I was thinking I was gonna type. Then I thought, Okay, he's getting it. Like he figured out how to access that part of who he is and how to talk about it clearly. But I am not the person. I've said it a million times here, I can't just give you instructions. I don't, I don't know how to do that. I believe that at my, at my core, I'm just a storyteller. So that's the way things work. For me, it can be very, very frustrating at times, because I sometimes have to tell the story to myself, while I'm telling it to you. And the last paragraph I wrote for him as an example, I wrote the first sentence in four or five sentences later, I was finished. And I told him, I said, Would you believe if I told you that five minutes ago, when I wrote the first sentence, I did not know what direction this paragraph was going to take what I was trying to say with it, or, and I had no clue that what came up in the last sentence was ever going to come up. And I said, I know that might sound crazy to somebody like him, who's a good technical writer who would plan out what he was going to say. I said, but I'm just accessing a different part of myself. So it just has to kind of flow out the way it flows out. And not all of the words are valuable. So you know, when I'm writing, I can go back and drop lines and cut things out and do things like that. But when I'm talking, you're gonna have to listen to all the BS, the middle to get to the good part. Because that's all I got. So Well, that's all you know. I mean, it's just it is what it is. But I do get that it could be. As I'm even thinking back on the last three minutes of me talking now I'm like, God, I could get infuriated by that if it was somebody.
Kelly Griffin 1:11:43
But you know, what people are attracted to podcasts and any kind of entertainment due to the personality of the host. So it's that same personality that brings people in. So if someone doesn't like it, then that's probably, you know, someone who maybe needs to, you know, find another another host, because that's just personal preference. But I don't think you need to stop being you because that's what brings us all in. That's how that's part of how you care for your daughter. So well, you know, it's, it's all encompassing. So
Scott Benner 1:12:14
Kelly, I've been married to a woman named Kelly for 21 years. And I'm not comfortable with a person named Kelly being this kind to me. So we have a podcast right now, if you want to tell me that I'm doing something incorrectly or asked me why I have not, in fact, fixed the pole on the rug. that those are the sorts of things you should be directing me right now. You've made me very uncomfortable with your kindness. And I have to stop. But no, seriously, you were very kind. And I appreciate that, because that is at my core how I feel about it. But it's tough when someone tells you the thing you feel like you're doing a good job with. You're not and you're like, Oh, I'm not Oh, okay. And it's it's it's an IT, like I said it doesn't crush me. I'm not like thrown off by it. I can't imagine I would patently changed what I was doing. Because of one voice. There's 100 other reviews on there. And most of them are, you know, are different. But at the same time it does, it does occur to me that it's important to stop and listen, and and say this is someone's perspective, and it's completely valid. So maybe I talk too much. I don't know what to do about that. So I can't I don't have any time to edit this thing down. You people know how much time it takes just to get it recorded and online. It would be you know, when you listen to a professional podcast, you know, are the ones out in New York. And at the end, they're like I'm the host, and this is my co host and our editor was and this person did the sound. That's it's a lot of work, you know, so I don't have that kind of I don't have that kind of system going over here. You know, but one day, I don't know, maybe one day?
Kelly Griffin 1:13:50
Well, yeah. And whenever you step out and try to do something, be prepared for that kind of criticism as you as you know, you know, but I think it's it's better to step out and do it than to not because you're afraid of the criticism.
Scott Benner 1:14:04
Kelly have we just by mistake drawn a parallel between what I was talking about element of type one diabetes, I think we have,
Unknown Speaker 1:14:11
it could be a great time to stop.
Unknown Speaker 1:14:15
Thank you so much. God, it was a pleasure. Thank you
Scott Benner 1:14:30
so much Kelly for coming on the podcast and for sharing your music which I'll play at the end again. Also a huge thank you to Dexcom and on the pod for continuing to support the podcast with ads. Thank you to you guys for sharing the podcast with other people downloads grow every week. It is because you're sharing please keep doing that. Also, I just saw all the great new five star ratings. You guys left on iTunes and a couple of really great new reviews. Thank you very much. Did you know you can now leave reviews on Amazon Do you know why you can do that because As the Juicebox Podcast is now available for Alexa. That's right. If you're an Alexa user, all you have to say is Alexa enabled Juicebox Podcast. After you've enabled the Juicebox Podcast skill on your Alexa device, you can ask her to do all kinds of things, play a new episode, subscribe, rewind two minutes, go back five episodes. It's really crazy. I'm sure you will actually users know all about it. I don't have Lexus. I'm not 100% on top of this. But what I've been hearing from people who do have Alexa, I think this is something that's really exciting. So hopefully in your house in your life, you'll be saying a lot of this Alexa, tell Juicebox Podcast to play the newest episode. To find out more about Kelly Griffin, you can go to Kelly Griffin, soprano.com
Unknown Speaker 1:15:44
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