#349 Terry lives in a House

Terry O’Rourke (from episode 53) is back!

Terry O’Rourke from episode 53 is back. Terry and Scott dig deep into type 1 diabetes.

To Read Terry's thoughtful companion to this episode on the blog, go 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, everybody. Welcome to Episode 349 of the Juicebox Podcast today. I bring you a real treat. Terry O'Rourke is back on the podcast. You may remember Terry from Episode 53. Terry lives on a boat. Well, Terry doesn't live on that boat anymore. But he is still an amazing

Unknown Speaker 0:24
what do I want to say here?

Scott Benner 0:28
He's just a good guy. And he thinks about diabetes in a way that is valuable for all of us to know about. And this conversation was completely reflective of that it could have gone on forever. I think this episode is over an hour and a half long. And it could have been two and a half hours long. Terry is a he's a gym. He really is. He's He's an asset to everybody living with Type One Diabetes. And you are about to benefit greatly from that fact. Friends, this episode of The Juicebox Podcast is sponsored by dex comment on the pod. You can get a free, no obligation demo of the Omni pod tubeless insulin pump, just by going to my Omni pod.com forward slash juice box. ami pod will send you a pod right to your house. It comes in the mail. It's amazing. Take it out, look at it, apply it to yourself. Wear it see what you think it's that easy. If you love it, you keep going. And if you don't you toss it in the garbage, no harm no foul on the pods not gonna pressure you. They want you to do what makes you happy. Miami pod.com forward slash juice box. And of course, the dexcom g six continuous glucose monitor can be learned about found out about and gotten@dexcom.com forward slash juice box find out about the continuous glucose monitor that helps Arden and I my entire family and a lot of people listening around the world make decisions about their insulin use that leads to better outcomes. Safer lives. more confidence, better health. You can't go wrong there. dexcom.com forward slash juice box. Let's get to Terry because you do not want to miss a word of this. As you're settling in and getting ready to listen to Terry, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please always consult a physician before making any changes to your health care plan or becoming bold with insulin. After you are done being absolutely enraptured by Terry, and loving him as much as I do, head to Juicebox podcast.com. To see the amazing companion piece that Terry wrote for this episode. Just like everything Terry does, it is amazing and detailed and thoughtful and entertaining and valuable to people living with Type One Diabetes. Just go to Juicebox podcast.com. Click home at the top and just scroll down to the blog posts. Terri's is called diabetes teaches if we're ready to learn just like that. This is Terry.

So I have to tell you that your first episode comes up so frequently. People you know, I love the one with Terry Terry Terry, which is your favorite one Terry lives on a boat. And I always I always get back I'm like, you know, funny thing. Terry doesn't live on a boat anymore.

Terry O’Rourke 3:45
That's right.

Scott Benner 3:47
But yeah, it's it's really fascinating. And, and I, you know, it's not that I don't understand why. But I do so many of these that at some point, like I get done recording them. And I think that went well. And that's really the only feeling I usually have afterwards. And then I get back to it some months later. And I edit it. And I think wow, that really was very good. This is a great point here and here. It's it's interesting what I can't remember between the conversation and then the listen back. But yet people just, they love yours. So I actually redid your audio, I spruced up your audio and put it back out because so many people still listen to it.

Terry O’Rourke 4:23
Yeah, you know, I listened to it myself for the first time since that since four years ago, and I just wanted to review what I said. What perhaps I don't want to hit again, you know, right,

Scott Benner 4:33
right. But do you now that you've heard it back so recently Do you think I don't understand why people like it?

Terry O’Rourke 4:40
Actually, I I felt pretty good about the positions I took and and the arguments I made. I'm always concerned about tone. And I realized that I'm I'm not very representative of the Type One Diabetes group, especially online.

Unknown Speaker 4:59
Well That's interesting.

Terry O’Rourke 5:01
Since joining your Facebook group, I realize I'm not the demographic. Again, I'm out on the skirts of the bell curve. much older, I have a lot more years. I'm not a parent. I'm not a parent of someone with diabetes, right? So I don't quite fit.

Scott Benner 5:18
You know, what's so funny is that I can see the people that come into the Facebook group, right, they answer a couple of questions when they come in. And there are, this will flip you out. There are more adults living with type one in that group than parents of kids with type one in that group. Oh, the parents are more vocal. Yes. And so I the back, I think the background I get out of it is that adults find it interesting to listen to someone else talk about management, someone who doesn't have diabetes, but is very much ingrained in it. Yes, that's that's the vibe I get once in a while I'll hear from an adult that gets over. I don't think overwhelmed is the right, the right phrase that but it's too much for them. The worrying? You don't even you know, like when parents are like hand wringing all the time. Yes. You know, and I wonder how that felt to you when you see it?

Terry O’Rourke 6:17
No, I actually the one of the reasons that you you caught my ear way back, when was the fact that you come at diabetes from a much different perspective as a parent, not just a pair up but a parent of a very young child? Yeah. And I found that perspective, very interesting, because it was not mine at all. Yet, it was somebody who cares about it. Who doesn't have it doesn't have type one, who cares about it so much that they do they assume a position that I've taken that I'm going to do whatever it takes to do this? Well, right. In fact, I think a parent of a young type one probably is more intense than even an adult, you know, caring about their own health.

Scott Benner 7:03
It really is interesting, and I say it a lot. It's there's this mixture of love and concern. And then you can be dispassionate, in as much as that it's not happening to you. So you know, somebody has a low blood sugar. And I know I did the right thing to bring it back up, and it's going to come back up. I'm not the one, I'm not panicking. I'm not the one who's having that horrible feeling of I should eat or I should eat more. So I can stay calm and say to her, listen, I know this is how it feels now, but in a few more minutes, you're not going to feel like this anymore. And you're going to be right back to to what you need to do. And we're not going to be fighting with a high blood sugar if you just hang on for one second. And I can console her and sit with her if it comes to that. But it's not happening to me. I always think if it was happening to me, I would just keep it.

Terry O’Rourke 7:50
Yeah, it's a much different perspective. When you're when that's, that's it, you've got skin in the game. It's it's and I try to make this point and sometimes I offend people with that. Especially medical professionals. They just they don't like to hear that. I think you know, you're on my side. I understand. But you don't have it. Right. Right. your your your perspective is probably as close to somebody that has diabetes as you can get without without having it. That's just what what caught my ear.

Scott Benner 8:23
Yeah. I appreciate that. And you know what, you did something back then, by the way, I think you were let me make sure I know. Because I don't know when this is gonna go up but the earth tomorrow, the 300 and 36th episode of the podcast is going up. Yes. Congratulations. Thank you. And you were on episode 53. I'm looking right now. Yep. And that was my gosh, March. Oh, interesting. March 23 2016. That was just a week shy of, you know, my gosh, five years ago, is that right?

Terry O’Rourke 8:52
That was four years ago. That was three weeks before I moved off the boat and moved from San Francisco to Portland. Okay.

Scott Benner 9:00
Yeah, that's that's just such a long time ago, I when I started doing this, I thought, no one's gonna care about this. And I'll do a few of these. And it'll probably stop and then I'll just be doing it for myself. I'll be talking to myself for a while. But yeah, I just couldn't believe but but my point was, is that you talked about your episode in, in a space online in a community that you were in, does it even exist anymore?

Terry O’Rourke 9:25
Oh, yeah. So to diabetes, not to beat somebody else's drum. But I've been participating there and writing there almost daily. For the last 10 years.

Scott Benner 9:35
You do a nice job, sir.

Terry O’Rourke 9:37
Thank you. That's my home online and

I'm a little bit divided about whether you know, I should post the link. You know, when the episode comes up, I almost prefer somebody else in the community to notice and say, Hey, Terry's done on the Juicebox

Scott Benner 9:52
Podcast. It's that's it's interesting, isn't it? That that feeling that you don't want to? You don't want to blow your your own horn like you just hoping I wonder if somebody else will find it and just mention it. It. I walked that line all the time, there are times I record things and I think, wow here, I know there's a group that would really want to hear this. But then you feel odd about just showing up in the group and saying, Hey, I just interviewed this person, I think this would be really interesting to you and leaving it there because it feels self serving. But I wish they knew. I'm okay. The podcast is being downloaded enough. Like I don't need a couple more I really think that this is that this is really for them. But it's it's hard not to feel like like, you also come from a different generation of sharing online. Have you noticed people shifting the way they feel about things like this? Are you just stuck in the way you feel about it? Or? Or

Terry O’Rourke 10:44
Oh, I, again, by reference to the bell curve, and how I seem to live in the skirts. This is also true. I am I am technically not part of my generation, or I am but I'm more of like Bill Gates. Generation. I've been using loop since November 2016. Okay, you know, six months after our last meeting posted? Oh, no kidding. Yes. And I thought about contacting you, I thought, Hey, I'm gonna do something new. I thought you know what, I'm gonna let this just let this thing age a little bit. But I don't know many people my age that are using, you know, the Do It Yourself automated systems. Right. And so I don't think I'm a good representation with regards to technology and the online communication.

Scott Benner 11:33
What about your eight? Well, first of all, how old are you?

Terry O’Rourke 11:37
I'm 6667. This summer.

Scott Benner 11:39
So So what about, you know, you're not seeing a lot of people your age online using the technology? Do you see a lot of people online sharing the way you do? Talking about diabetes?

Terry O’Rourke 11:50
Yes, yes, there's a lot of people in my age group and older, you know, into into their 70s. And I, I visit some Facebook groups, but primarily, I'm on to diabetes. So there's quite a quite a few people in my age category. In fact, we're missing kind of the younger cohort that you generally appeal to. If you're if your Facebook group is any indication of the demographic,

Scott Benner 12:15
well, you're writing, you might as well be chiseling hieroglyphics into a wall. Yes. Nobody wants to read anything.

Terry O’Rourke 12:22
Yes, it is. It's true. It's true. But I you know what? Writing first and foremost is the benefit for me. It clears up cobwebs, and exposes illogical thoughts. And so it's it's a, it's just a it's a good practice.

Scott Benner 12:38
No, I had a conversation the other night with Have you listened to the episodes with Kenny talking about loop? That was recently?

Terry O’Rourke 12:46
I don't recognize Kenny. I listened to almost everything. Yeah, in fact, the Dexcom guy, what's his name? Thomas Walker. Tomas. Yeah. We're just recess. Yes. I mean, I had all kinds of comments on that one, I thought, Oh, I don't I don't want to I don't want it to totally take over our conversation. But

Scott Benner 13:03
well, it. So it's, it's interesting, how I think the interviews end up falling into segments. And so like, I brought up Kenny, because Kenny and I have been kind of looking at Arden's loop settings together for the last week or so. And so we got together the other night, just on, you know, just face to face like this. And we had a conversation, we're eventually going to record it, but we're trying to figure out what we think first. And that process of talking over diabetes stuff and bouncing it off with someone else, whether it's in an interview or in writing or something like that. It's incredibly helpful because you say something, and then you think that's not right. And it wasn't until you said it out loud that it really, it really strikes you right? Yes. Yes. And so you have that experience while you're writing?

Terry O’Rourke 13:51
I do and I also you know what your description you just said about you know, in conversation, you discover things about the problem. I used to work as a electronic technician for a major airline Hmm. And that was my style of troubleshooting. I could not just say Oh, look at this circuit look at this component. I just I got a sneaking suspicion this is the problem right? I would pull another technician over with me and says okay, this is what's going on. This is what I've tried. I've tried this and this and this. And as I'm describing it, I will often think oh, I should have tried this other thing. So the my verbal verbal part of my brain kind of kind of hooks on something that oftentimes proves to be the key insight and but it was the actual talking about it that

Scott Benner 14:40
they get to it. Do you ever have that feeling where after it happens you think I didn't even need this person here? I just did the conversation right

Terry O’Rourke 14:48
Right. Yeah. And I had there was a lot of technicians who prize this lone Eagle thing that you know, Eagles don't flock was there their creed. Oh, no kidding. Yeah. You know, you know if you have to ask questions as a sign of weakness? I thought No, it isn't. It's just another way of thinking and interacting. Yeah, my brain is different than yours. And I'm not alone evil, no more social that way.

Scott Benner 15:13
100% you have to, for me and I and I see their side of it too, because there are those people and, you know, looping or pumping, or all that stuff brings it out is that they just look. And then there's the answer. Yeah, they see the numbers and they look at something, oh, the answers here, I see those things. And I start painting pictures with words like, I don't know another way to say it, like I talked my way through it. It's like, you know, it's like driving a car up a hill, when it loses momentum, you need to keep your foot on the gas. Because if you do that, and then all of a sudden, I've explained why you need a good base of bazel. And yeah, and but I couldn't tell you, you know, at 12 o'clock, I saw a negative insulin on board. And that's how I knew that the bezel is wrong, or, you know, like, right, that just wouldn't strike

Terry O’Rourke 15:58
didn't come out of a formula. No qualification. Yeah. And I think you have an unusual ability, it's been my observation of what you've done over the years, you have an unusual ability to get things on a visceral level, it's like, oh, this is either too much or too little insulin, or it's too soon, or it's not soon enough, basically, just two dimensions don't size and dose timing. Yeah. And that's, you've said that many times. And it's not that complicated. When you get down to it,

Scott Benner 16:30
that means a lot coming from you, I very much appreciate you saying that I really do. My, my reasoning behind that is because I wrote about diabetes for so long. And I don't know how good I wasn't writing about it. But I would find that I would write forever to try to make a point. And that I just started thinking, no one's gonna read this, or they're gonna get bored or, or I'm gonna be unclear at some point, right. And, and the goal here isn't a click to my website, it's not a download to the podcast, like, you know, the goal is for someone to go live their life in a better way, and have an aha moment of some sort and be able to do this on their own quickly not to spend their entire day thinking about their boluses and their basis and their diabetes, that shouldn't be, you're not living to serve the diabetes, right? Like, you need to figure that out. So you can go have a life. And so I kept thinking, How do I boil this down like a need to distill it, distill it, distill it down to T shirt, slogans, so that people can have a moment and think, Oh, I know what's wrong here, I need more insulin, I got a note this morning. She's gonna hear this. And so I feel weird. But I got a note this morning from you know, a person who's in the diabetes game, who also has a child with Type One Diabetes. And it's a long explanation of what's been going on with their kids, blood sugar, and I think to myself, she knows this just needs more insulin. Right? Like, it's just, it's more like, I don't know why the kids needs went up, meet the need. And that's it. But

Terry O’Rourke 18:01
she's fearful of maybe making a change. That would be adverse, I

Scott Benner 18:05
don't even know, I just think it's interesting to watch him. People do it all the time they start. I don't know, like, you know, sometimes, like simple dishes are the best. Like, you know, you don't have to you don't have to dig in the back of the refrigerator and go, Oh, my gosh, we have carrots in the way and carrots, you know, just you know, blood sugars going up. It's not coming back down on bolusing. All the time, we'll put some of that Bolus into Basal. And let's see what happens, you know, and they know it. I know they do. Yes. But when you get caught in the vortex of it all happening, it's hard to just simplify and start over again, every time I think that's always been my goal is to talk about diabetes in a way that will strike you in the moment you need it and be actionable and not lead you down, you know, a three week rabbit hole of not being able to figure out what's going on. So yes, I appreciate that. Thank you very much. Yes, you're welcome. I mean, it means a lot and you can you tell me all this time you've spent it you know, we're you're writing and talking about diabetes, what's the beyond you beyond that? It's therapeutic and helps you Why do you continue to do it because it is it takes up time.

Terry O’Rourke 19:15
It feels good. I it's almost like somebody who is a you know, an athlete and training and, and if they miss they miss a day of working out, they miss it. They just they kind of just don't feel right today, you know, I'm usually go off for a three mile run and I didn't do it. I I get a lot of pleasure out of writing. And I've learned a lot about myself and I've learned a lot about diabetes. And and I realized it's such a great tool to clarify your thoughts. Yeah. And if you can express it in writing, then it probably it holds true and plus it also you know, if you get into a problem where you're you, you get into kind of Have a circular thought pattern. something's bothering you something's worrying you and you just visit the same issues round and round and round Round. You put it on the paper, you break that cycle. Yeah,

Scott Benner 20:10
that's interesting, and then helping other people. Is it your main focus? Or is it just a happy side effect of

Terry O’Rourke 20:17
putting it weird? I've often, you know, 2011 I retired. And so I was five years into retirement when I talked to you last time and almost 10 years and I've said to people, I said, this is it's kind of a strange hobby to have. But you know, some retired people, they do woodworking, they do radio controlled airplanes, they golf, I, I write about diabetes, I talk about diabetes, I, you know, I, I do this a couple hours every day, I'm reading, you know, scientific studies, I've done a lot of reading on COVID-19. I just posted a, an article today about the effects of vitamin D, and sunlight and skin color. So that one's got the opportunity to be very controversial. But anyhow, I, I've learned a lot. And I thought, you know, if I could do my life over again, I might have chosen to go into a medical field Really? Well, and especially this front seat of type one diabetes. I've had a hundreds of thousands of hours of experience, the level of experience that dwarfs any clinicians experience, even if they count all their college, all their medical school, all their continuing medical education credits. Everything. I'm as far as dosing insulin for me, they can't touch me. Yeah. And I didn't really appreciate that. Until the last, I don't know, five, six years.

Scott Benner 21:52
Do you think you reach more people doing what you do than you would as a physician, though, I,

Terry O’Rourke 22:01
you know, I don't know. I don't know how many people I mean, the website that I participate in the most, I don't think it gets that many views. I think what you do gets way more exposure. Well, podcast.

Scott Benner 22:14
Well, that's interesting, because I, I see the you know, I get responses daily, about the show. And it's interesting to get a, you know, an email today that you realize, is really the culmination of, you know, three, four or five, six months of this person's life. Because it's, you know, hey, I've had two a one C's now they've come down significantly, I'm doing this, I'm more in control, I feel better, whatever the note ends up being. It's interesting that they didn't have that whole thought that day when they wrote it, this has been happening to them for a while. So when you receive three emails today, and for tomorrow and to the next day, it's interesting. Those are the people I began to touch many months prior to that. Yeah, it's a weird, it's a weird thing to kind of wrap your head around, because in my life, it's happening right now. But for them, this is this is a long story, they're telling us. I wish that uh, I wish that you do such a good job. I wish that I wish more people saw it. I wish more people saw anything helpful from anybody. But you said earlier that, you know, a couple of times that you're on the outside or maybe on the fringe of this. How do you mean that? Why Why are you not?

Terry O’Rourke 23:30
Well, okay, let me there's a study that came out about a year ago, and I just wrote down the statistic because it's so powerful. They basically looked at two groups under 18 and over 18. So children versus adults, okay. And I think it was it was published in diabetes, therapeutics, technology and therapeutics or something like that. It's a group out of California. And they said that only 17% of children have an A one c under 7.5. And of the adults, only 21% had an A one c less than seven. So there I am, with what the ANC well under that, and I'm only one in five. So what's going on with that? It's number one, I can say diabetes is hard. Controlling is hard. But there's people like yourself, and people like me, and there's many others out there. But we're in a minority. Yeah, that know how to do it well. So I want I want to share that. I don't want to be blowing my trumpet. Like, hey, look at me, I can do this. No, I want I want other people to say, Oh my gosh, what you did, I tried

Scott Benner 24:45
and it worked for me. It could be aspirational. That's like success. 100% it needs to be aspirational. It needs to be Listen, you can only control you, right so if you put good information out in the world and some people are off put by it or they're offended. You're like, Look, I don't know what Trey one season you haven't said it yet. But you know, I say Ardennes all the time, because I want people to know what's possible. I don't care if you think I'm good at it, I want you to look and think, but there's a 15 year old kid somewhere doesn't have diet restrictions. He's got an eight, one C and the fives for years and years and years, though, that seems amazing how, you know, and then if you come here it, and it's not for you, or you don't think you can accomplish it, or whatever ends up being okay. You know, like, I'm not trying to I'm not trying to change everyone's life. I just I, at my core, I feel badly that some people are having these outcomes. And they believe that that's just what exists. If they if they could find out more exists, and they decide they don't want it. You know, that's on them. That's fine with me. But I feel badly that people don't know.

Terry O’Rourke 25:51
Oh, there is another another item that's bandied about the diabetes online, and it comes up in your conversation regularly. So this whole idea of your diabetes may vary. The face of it first analysis, of course, it's true. We all have different bodies we have we're different genders. We were different ages. People are unique. But I found that that your diabetes may vary has a dark side. And that dark side is somebody considering Well, maybe I should try what Terry suggested, or maybe I should try what Scott suggested. But they toss it off, they dismiss it. And they say no, I can't do that. Because my diabetes is different. I have problems with my hormones or this other, they got 100 reason is it's all under your database may vary. And that I think, just torpedoes your ability to be curious and to follow up and to test and experiment.

Scott Benner 26:48
It gives you the feeling that there are different kinds of diabetes. And the person who's having this success over here must have a better and easier kind or you still hear people say sometimes I'm brutal. I was like, Yeah, no, you're probably not. I don't think that's an anachronism. Yes. It's not a real medical term. You know, like, what if, what if it turned out that your, I don't know, your bazel is too high, and you're always falling? Because that you just never thought of that before it, but they look at it like, Look, I'm brittle, like my blood sugar won't say stable. And, and it's funny, because I believe I know the person who came up with that. That acronym like your diabetes may vary,

Unknown Speaker 27:29
and it is a truth and

Scott Benner 27:30
100% true in and I believe in the, in the facet that they meant it in. It's really great advice. And but who would think that it could bleed into what you are talking about and become so it's detrimental? Yes. Yeah.

Terry O’Rourke 27:46
We don't always want to face maybe at some level, we see a truth that we think you know, what, maybe I'm not doing this right. But then you're the stronger part of your personality takes over and said, No, no, you're fine. You know, it's just because your diabetes is different than theirs. Right. And it's, it's, it's, it's not helpful, it really caught people need to be honest with themselves. And of course, we all we're all human, we all do this to a certain extent, but nobody's perfect. It's

Scott Benner 28:13
incredibly difficult, and you only have so much bandwidth that you have to work with every day. But I I want people to know that if you get the stable blood sugars that you're talking about learn how to Bolus for meals, it creates a lot more time and and freedom for thought about

Terry O’Rourke 28:32
quality and quality. That's why I you know, I, I often said to people write about it that

if you want to learn a lot in a hurry,

Scott Benner 28:51
the Dexcom g six continuous glucose monitor allows you to see loved ones blood sugars from a distance that can be across the world, or across your living room. The dexcom g sex has Sharon follow, right. So with an iPhone or an Android, you can see your child's where your wife's or your girlfriend's or I don't care any loved one at all. Anyone who wants you to see their blood sugar, you can see it remotely right there on your phone, the speed and direction as well as the number. My blood sugar is 125. And my mom is at work and she can see that. That's how that works. My blood sugar is falling. Its falling two points per minute, one point per minute. I can see that. And so can the person following me? Check out the dexcom@dexcom.com forward slash juicebox and get started today with what I think is one of the most valuable pieces of diabetes technology that has ever existed on the planet. No over exaggeration. dexcom.com forward slash juice box. See everybody's blood sugar. See your own See the speed, see the direction, make better decisions about your insulin with that information. My daughter Arden is about to turn 16 and she has been wearing an omni pod tubeless insulin pump since she was four years old. Even I can do the math on that, that sounds like, Wait, hold on for, like 12 or 13 years. All right, maybe I can't do the math on that. But I do know that by wearing a tubeless insulin pump, you have freedom that you just don't have with the tube pump, the freedom to swim and continue to get your basal insulin to take a shower and have your basal insulin to be active without having to disconnect, right? soccer games with a tube hanging off of you and the pump. Where do you hook that on your soccer shorts? Exactly? I don't know. But you don't have to worry about that with Omni pod. Because Omni pod is tubeless. It is self contained. And the controller that you use to make you know, hey, I want to Bolus that kind of stuff that's not connected to you. Wireless. Magic, understand magic. It's not really magic. It's pretty simple technology. But that's not the point. It's wireless. The Omni pod tubeless insulin pump has been a mainstay in our life since diabetes arrived. It is one of the best decisions that we have ever made as a family. You don't even have to take my word for it, which is kind of the cool part. All you need to do is go to my on the pod.com forward slash juice box. And Omni pod will send you a free, no obligation demo of the Omni pod right to your house. They call it a pod experience kit. I'll send it to you. And you can experience the pod like you see where the name comes from, for yourself in your own time in the privacy of your own home or loud and proud wherever you want to be. Doesn't matter to me. Put it on, wear it, take a shower, go for a run, do your thing, live your life, see what I'm talking about. Then if you want to get started with Omni pod, you can that easy, come right to your house in the mail. The mail is magical to you know, just put something in the thing and shows up somewhere else. Like teleportation. I mean, if you don't think about the fact that it's in a car, or truck, or whatever the mail people use, we've gotten pretty far off topic, my omnipod.com forward slash juice box dexcom.com forward slash juice box links in your show notes, links at Juicebox podcast.com. Get out there, do something good for yourself, do something great for someone you love. Get going today. Stop waiting.

Terry O’Rourke 32:49
Give diabetes, everything it asked for maybe you only do this one day a week, maybe you'll only do it one day a month, but have a time period setup where you Okay, whatever diabetes wants, I'm doing it, whether I need to eat another I need to go out and walk around the block three times may need to take a little bit more insulin. But you just basically live your life for diabetes. And people say well, I don't want to, you know, I don't want to be a professional patient or whatever. But you know what, you have diabetes, diabetes is not part of your life. Diabetes is your life. It's just as much a part of your life is the color of your eyes, or the color of your hair, or whether you have here or not.

Scott Benner 33:30
And if you do what you're suggesting, and once a week, it's a great idea. Once a week, give yourself over to it, the things you'll learn in that one day will start to translate out to the rest of the days of the week

Terry O’Rourke 33:41
happens is you start to accumulate a body of knowledge about yourself such that it becomes part of your thinking. And now the whole task is smaller. And you do have you do have more time for what you think is your real life. Yeah.

Unknown Speaker 34:00
No, I appreciate that.

Terry O’Rourke 34:02
It's, I think it's an effective too. And I found this I went through a crisis in 2012, which we talked about in your previous podcast with me, where I was diagnosed with a complication and I basically went through this I just retired, I thought I'm going to give diabetes, everything at once. I learned so much that I found out that my blood sugar's settled down. It took less effort. After many months. Yeah. And I my whole life was better. So what we're trying to avoid at trying to bargain with it and say, well, I'll do that later. It doesn't work. We have to say, like a toddler, you know, a toddler, a fussy toddler, you can try to put them off and say get away, you know, you're just not Yeah, you know, or you can address their needs at the time that they need it and in the end, you're better off they're happier. you're happier.

Scott Benner 34:56
Yes, yeah. Yes. What do you think that when you say things like this Are you sometimes met with people who brusque about that? And is that what you mean about being a little bit on the outside as well, like, people don't want to hear it directly like that people

Terry O’Rourke 35:12
don't want to, I think there are people like me, I'm saying them online. And people like yourself, where they do want to figure it out and learn as much as they can and make their life better. But there's a whole, there's way more people where they're just stressed trying to strike the deal with diabetes, like whoa, don't take over my whole life, I need to work, I need to be a parent, I need to be a spouse. And, and they try to make that division that try to divorce the idea of their diabetes versus the rest of their life and making that bargain. It's, it's not the best thing to do, I really do think you need to recognize, indeed, you have this, you have this, this disease. And and you need, you need to treat it well. If you want to, if you want to have if you want to become more real you

Scott Benner 36:03
once or twice a year, maybe more like once a year, but it's happened a number of times since the podcast has been going, I will get an email that is long and well thought out. And and borderlines on hateful about I don't understand, and you don't have diabetes. And this is hard. And it's not what you're trying to say it's not it's doesn't work the way you think it does. Really, really angry. And then each one that I've ever received has been followed up about six months later, by an apology. Yes, I went back I listened again, that thing you said made sense. I tried it my a one C's down. And they all end up saying the same thing. And I actually had this experience with a with a person who came on the show. She said it right on the show last year. She said I realized I wasn't mad at you. I was mad at myself. Because

Terry O’Rourke 36:56
exactly right, right. Well, I was gonna say yeah,

Scott Benner 36:58
and I and I thought well, that's really it's been one of the more meaningful experiences that I've had kind of behind the scenes with the podcast, is to watch someone go through that experience, because it shines a light on just how horrible diabetes has been for them, that it pushed them so far into that corner, that even faced with information. That's I mean, let's face it, I'm not talking at a high level on this podcast, I have pretty much distilled this all down as far as I can. If

Terry O’Rourke 37:29
this is your appeal, bread, I've dumbed

Scott Benner 37:31
it down. Sorry, I've made it so silly. I can understand that. Okay, and so but but so when somebody sees that, and it's still like, Oh, that's not right, this doesn't work. But I see as a person who's been trapped in believing that that's true, that, you know, they got the bad kind of diabetes. And it just none of this is going to work for them. And that's a terrible thing to see that people go through all the time. And everyone that comes out of that or, or very excitingly, never experiences it because they get the information up front. I'm always very excited for those people. You know, yes, they don't they either have broken free of it, or they may never ever have that feeling. So

Terry O’Rourke 38:08
yes, that's a good observation. Interesting. Anyhow, it's, it's not it's an ongoing thing. And so, as the as I'm getting older, I'm starting to starting to wonder about, you know, how this, how this last and then there's this pandemic that we're in the middle of, and all the issues that's brought up.

Scott Benner 38:30
What what kind of impact has it had on you? I mean, personally and with your diabetes.

Terry O’Rourke 38:36
With my diabetes, it hasn't been a problem except for the knowledge that people with diabetes and other other comorbidities in which I have other comorbidities. I have some heart problems, where I feel like I'm in the crosshairs of some of some Hunter Hunter being the virus. And I've kind of settled down with with that idea. But I I take reasonable precautions. I I put myself into quarantine, probably 10 days before the governor of Oregon decided it was a good thing, okay. And I was starting to pull back I developed a habit starting in the fall, I was going to the gym every day just to use the sauna. Because the heart healthy effects of sauna Yeah. And I was I had tremendous benefits from it. I just was amazing. How good I felt. And I was taking the street car I don't own a car. So it took the street car to the gym every day. And so as the stuff started coming up on the news, it was in February and I thought okay, I live a mile 1.1 mile from the gym. I'm not gonna take streetcar anymore. I'm just gonna walk so I so I did that just walk and that I thought this being in the gym with you know, in the locker room and everything I said this is not going to work either. And so I suspended my membership, right? Probably about two weeks before the gym club. So I made those adjustments. I lucky enough, I have an adult daughter that lives in town and she does grocery shopping for me. So I've made made combinations that way, because I know that that would be one place that I could pick up the virus. So it's kind of interesting in that I'm more of an introvert character. And, and reading and writing online, occupies a lot of time for me, like I said, it's my retirement hobby. Yeah. And I going into quarantine wasn't that big of a task for me. I think somebody like yourself would have a harder time, who is more gregarious, that really likes to mix it up with people.

Scott Benner 40:44
It hits me a little bit. It's funny first, that a lot of people I know who have over the years written about diabetes would would describe themselves as introverted. And it's funny because when they're asked to speak or do something, they often turn it down. Because that's just not where they're good. They work best, you know, when they're when they're speaking through their keyboard. But I get so I've been the person I'm the I'm, you know, you've heard of the Designated Survivor. I'm the opposite of that. I'm the person in my house that we've decided we could all live without if he drops dead. So I get to go out to pick up the groceries and things like that they they must have gotten together behind my back Tyrion been like which one of us can we you know, do without it's him? Well, we'll send him for the chicken breast, you know, so I get out in public. And it's not lost on me what you said. I like to talk to people. And I know that it might seem irritating to some people, but I don't think I am. But I am the person who will say something offhandedly, while we're checking out at the grocery store, or, you know, I'll make eye contact with I use this this a lot. But you know, sometimes you see a guy grocery shopping with his wife and, and and she's just going down the aisles so slowly, and then you can see the guy behind her is just like, Come on, let's go I want to get out of here. And I'll make eye contact and smile a little bit and you'll get a knowing smile back. It's a Yeah, you know, you don't quite tap your wedding ring, you know, but it's, uh, it people see that all that's gone, not being able to see people's faces I find upsetting, and not because I can't see them. But because I start feeling like, well, what's the point? You don't I mean, like if we're, if we can't see each other, and we can interact? And what's the there's no need for us to be together at all? And then does that mean I I'm born? And then what? How do I learn and grow and become social and buy a house that I can hide in one day? You know, like, Is that is that the play? You know?

Terry O’Rourke 42:39
So getting back to your earlier question about my diabetes and the pandemic. I, I was upset more early on. But the observation that younger people didn't seem to appreciate their role of possibly infecting me. All they heard was young people don't have severe consequences, not to worry, it's only the older people that end up and they totally lost the concept of being a carrier, especially an asymptomatic carrier. And I've seen time and again where people you know, they just they crossed by you closely on the sidewalk you know, not maintaining a six foot distance. Or even like I live in a high rise building and people in the elevator you know that they don't they don't want to number one, I stopped I stopped riding the elevator with people I just refuse I won't get on if there's people on it. And I tell people No, I'm riding alone. Yeah. But I just noticed that younger people were that they're not tuned into this, you know, like, the kind of spanning the lobby where my path has to bisect their conversational group tries me nuts. And actually one of those guys I know that was in that instance, I looked outside my my doorway one day because I heard somebody hacking and coughing, it was the COVID cloth, right? He was waiting for the elevator. And this guy was in though and I think, what does it What does he understand about this idea? You know, my health is more fragile than theirs and they just like, it's like they're not paying attention. It's almost like it's not evil or mean, it's just thoughtlessness. You know, it's interesting. I heard this stat the other day, and it was all these statistics are simultaneously comforting for some people and completely frightening for other people. And one of them was that a number a larger percentage of people who are dying as elderly patients with COVID-19 have already outlived their life expectancy. And it went and it was said like, see, it's okay. You know, like and you're like, Well, wait a minute.

Unknown Speaker 44:53
Yeah, I don't

Scott Benner 44:53
know if you realize it when you're 30. But when you get to 70 you don't wake up every morning and think oh, well, you know I guess it's cool if I die today because I already made it past 67 or whatever, you know, like that's that's not how you don't become you're not on some sort of a countdown clock in your mind when you get older and just thinking, oh, I've used up all my good time is is all cake. That's it, that's a an observation that's made macro and and this is such an interesting time to consider the idea of being uptight being you being micro and being macro about thinking. It's and and people can't separate the two oftentimes, or they do. And they're, they're amazing about it, you'll see people who fall more into like the social justice warriors kind of category, they're, they're covering their face six different times, they won't go outside, they're trying to save you and everybody else. And that's great. But then there's plenty of other people to your point who either don't believe in it, or don't care, or their desires end up being more important to them than someone else to say further

Terry O’Rourke 45:55
not paying attention or watching the tiger thing. On the videos. I it's like, they're more given to amusements than they are to, to researching things closely.

Scott Benner 46:09
Yeah. Yeah. To really understand what it is they're saying. And not just go. It's interesting, because this, it, it really does apply all through life in many different ways. Your first thought, probably not right. You know, unless it's about the thing you're specifically trained in or understand in some way that's, you know, over and above what everybody else does. But when you say, you know, you see it joked about online all the time, you know, there's 10 doctors are telling me to wear a mask, but they some guy went to high school with said it's okay, I don't have to, you know, like, it's pretty, that's their first thought, I always find that to be a very human idea that when you think something is correct, it would be strange to doubt yourself, right? Because it would put you in indecision constantly. Because just think of all the things all day long we do that probably could be done better. Right? You know, but that's my first thought. So this is how I handle it. And, you know, you only need to be married for a little while to have someone look at you and say, why did you just throw the one gallon container of milk in the recycling bin without pushing the air out of it? So it would take and then to see that person go? Oh, I've never thought of that before. You know, like so your first law, it's not always the right one.

Terry O’Rourke 47:23
It's what I find interesting about listening to podcasts like yours is I hear things every once in a while I think I never thought of that. Yeah, I'll try it. I'll do it. I don't have a ready example. But it happens all the time. And these little things over the years, they add up. Yeah. And they really do accumulate to your benefit.

Scott Benner 47:45
Well, you brought one up earlier that I hear about all the time, just the idea of a sauna. Just a nice, what, 30 minutes, right, a nice dry heat for 30 minutes, and you get that or real regenerative feeling from that?

Terry O’Rourke 47:59
Well, and there's there's a there's actual medical studies done, you know, and Scandinavia and Finland, in particular, kind of the home of the sauna, or one of the one of the places where sauna occurs the most, they actually did a study and people my age group with heart disease, and it was shown to be beneficial, it reduced the rate of heart disease and stroke. And, and people in my age category. And they made a distinction between people that did it more than four times a week and people that did it less than four times a week. So this whole idea of you know, sweating, and of course, it's interesting, this sweating idea it spans every culture, you know, the indigenous Americans had sweat lodges. Right? And in Japan, it's a thing it's it's there's this sweating thing is common all all over the world through history. And anyhow, so they did this, they did this study, and they show that it actually does have a medical benefit. And it I think, I think it's a it's a real thing, and I really missed that. Yeah. Now that I'm not going do you

Scott Benner 49:04
ever shock yourself too cold as well? Or do you stick with no,

Terry O’Rourke 49:08
well, I I do that in the sun. I will take a cold shower afterwards. Okay. Yeah, that's part of it. That's In fact, what I first learned Asana was I was a like a summer camp for high school kids and young adults up in northern Minnesota and they had a sauna. And we would we would get out of the sauna and run run out and dive in the lake. And then I visited there one time in the winter and we got onto the solder and you know, it's like 30 degrees below zero and we were all go out and roll in the snow and then come back in. And there is something to that. Yeah, no. It's good for your immune system. I

Scott Benner 49:45
don't know a lot about it. But I have heard people talk about like hot and cold like kind of shocking to your system and how good it can be for you. I and I had a similar experience that you as you prior to this all happening maybe four weeks prior to it. kind of started a different kind of way of thinking about my, my health. And I, one of the things I was doing was seeing a chiropractor, just to try to help get some of the tension out of my lower back. And he was having real great success with it. And I was feeling much differently and improved. And then I couldn't go see him anymore. And now I'm back exactly to where I wasn't. And I've sat here and tried to think of what he was doing and tried to mimic it somehow. And I just, I can't find it, you know, whatever that thing is. So it's just, you know, little things, and I don't know if he was doing anything great. I think he was just kind of creating some separation for my spine. And and it was, I felt good. I felt like there was inflammation going away that I had. And it was it was progressively getting better. And I thought, Oh, great. And then one day they called they're like, don't come, you know, you can't and I wasn't going to it by the way. Yeah, I acted like I was like, Oh, I'm so sorry. But I wasn't coming. That's really something. Well, I mean, listen, you have to protect yourself. And it just, it doesn't make sense not to I would think for you. I mean, with respect your age is more of an issue than your type one because your type one's not causing you any medical concerns, right?

Terry O’Rourke 51:18
No, no, I type one is, in fact, there's another interesting study referred to about the number of people in the United States and probably around the world who are metabolically healthy. And they had a very specific definition of metabolic health being the size of your waist versus your height, the your triglyceride number, your high density lipoprotein number. And there was there was one other measure, very simple things to measure. And they found that in the United States, that only one person in eight, only 12% of the population was metabolically healthy. Hmm. Of course, somebody like me, I was automatically tossed out of that, because I you know, type one diabetes, I take a hypertensive pill, oh, that was blood pressure. What is the other measure, okay? Blood unmedicated blood pressure below a certain level. So only only one person at eight is metabolically healthy in this country. And so I think, you know, I am probably more metabolically healthy than then most people in this country that don't have diabetes. Yeah. Those other seven for sure.

Scott Benner 52:27
I keep wondering when that conversation is going to start happening, mainstream. The and I know, it's, nobody wants to feel at fault ever and that so then a lot of a lot of what we get back, even through, I don't want to just say through the news, I even think through some podcasts and blogs, nobody wants to hurt anyone's feelings. And so things are kind of kept vanilla. Because of that. Sometimes I think we Yeah, a little bit what we were talking about earlier, I keep wondering when someone's gonna say, Hey, I don't know if you noticed, but sick people get sick more often than, well, people get sick. And maybe we should all be looking a little closer.

Terry O’Rourke 53:05
I've heard the analysis about this COVID-19 pandemic, is that it's not so much about the virus itself and the pandemic, as it is an indictment of our overall metabolic health. And that we need to pay attention to this underlying condition. If if that number was not only one and eight, if that number was like six and eight, were metabolically healthy. Do you think we'd be having the the incidence and severity that we're experiencing now? Yeah. Well, it wouldn't happen. And it shows the people, people who have high blood sugar upon admission. High one c upon admission, those are the ones that get it the worst, or the the risk goes way up. Right.

Scott Benner 53:49
And have you heard people talking about that? That having COVID-19 has thrown some people into type one diabetes, it's been the stressor at the end. that's starting to be

Terry O’Rourke 54:01
interesting. Yes. And I know we've always made these associations. And I happen to have my own little story about that I, I was bitten by a tick about two years before I was diagnosed with Type One Diabetes. And I came down with something called Rocky Mountain Spotted Fever, which kills like one in five people who get it well. And it's very characteristic spots on the palm of your hands and the bottom of your feet. And I a couple years later, I came down type one diabetes, and I've always thought, well, I wonder what the connection is there. Because it was an immune immune problem. In fact, I was on IV tetracycline for 24 hours, which is like corrosive to your, your blood vessels. So I don't know if my immune system responded to that. Or it could be more complicated but seems like everybody with Type One Diabetes has a story about whether they caught the flu a few weeks before or they had something else. Go on, right? But there's no cause and effect. It's just Association.

Scott Benner 55:05
It's how I wonder about it too, like, do you have the markers, and either get lucky enough to not bump into something that taxes your system to the point where it pushes you over that edge? Or? Or are there just some people that don't have the markers and can't get sick like that all the time, and we just never develop type one. I assume that's, you know, that's how I sort of think about it. And, and, you know, Arden had coxsackievirus, right before she was diagnosed. And that's even hard to think about, like, is there somewhere, you know, I don't take it personally, like, I don't feel like you know, did I did I take her to the store and she got sick? And that's why it happened. But is there a world where if we didn't bump into a certain person on a certain day on wouldn't have gotten diabetes until she was 20? Do or maybe not, or more, never at all, or whatever?

Terry O’Rourke 55:50
Yeah. Faith plays a role. It's like the soldiers say, the enemy gets a vote. No, it's a vote, and you don't that's out of your hands. Yeah. You can't worry about all that. You just thank your lucky stars for the things that didn't, you didn't get tapped for.

Scott Benner 56:07
I heard my son say one time, you know, sometimes people will say to you, like, you need to put the ball in play there. We really needed that. And he'll say, you know, the pitcher is trying to stop me from hitting it. You know, like, I'm not just, I'm not just updates, not on a tee. You know what I mean? Like, he's trying to beat me, I'm trying to beat him. I'm also trying to beat the other eight guys out there. He's like, you know, it's not as easy as hit the ball. And it's not as easy as you know, just you know, like you said, the the enemy gets a vote. That's a real it's a really interesting way to put it and apply to diabetes like this. Well, you must have a list in front of you. You're an engineer. What else did you want to talk about?

Terry O’Rourke 56:42
I have way more way more here than we have time. Don't don't

Unknown Speaker 56:47
don't say that we keep going

Terry O’Rourke 56:48
on. One thing I would like to talk about is is our doctors, okay. I've had a long history with doctors, you see, one, four times a year, I've been doing it for 36 years, I've probably gone through about six doctors. I have never found the doctor, I've never found the one where I think oh, this is the one yeah, this is the one who gets it, who's going to treat me right is going to understand it. I and I went through, you know, some some anger when I when I finally discovered it, how much of a role carbohydrates played in my disease, that when I started limiting my carbohydrates, I got so much better. I was taking less insulin, I was losing weight without effort. My energy was higher, my blood pressure went down. all this good stuff happened. And I thought, Oh my gosh, why did my doctors never even bring this up? And I was angry. Yeah, you've talked about this. And but I've given that up. Anger is that good to hold on to? It's appropriate in the short term, but not chronically. And I realized that all these doctors have a lot on their plate, they have a lot. And now they see so many patients a week and they've got you know, they're there. They got in it. They got in the profession to do good. And they're really that's it spot the goodwill. But this is my recent insight is their agenda does not completely overlap with yours, right? And so many people defer to the doctor's agenda. For instance, their their attitude towards hypoglycemia. I often said they're hyper phobic about hypoglycemia. And the reason they are is because of their legal exposure and their professional exposure and and the professional standards of care as published by organizations, like with the American Diabetes Association. Just you know, the whole thing about the time and range, they decided that 70 to 180 is the time in range. Well, for some of us, that's a joke. It's just like, that's that's weeks week sauce. Why? Why not? I understand. For some people, it's a good idea. But the doctors are so afraid of hypoglycemia, they'd rather have that that high end be up at 180 not thinking that's it's not appropriate in every situation. So the doctors, doctors interest are not completely congruent with yours. And you need to understand that. And then you need to decide with certain things that you take responsibility that your point of view, your perspective, holds as much gravity as the doctors and I wish the doctors would give us a seat at the table instead of just talking about us. But say, hey, patient, what do you think,

Unknown Speaker 59:41
right? What are your goals? Seriously, not

Terry O’Rourke 59:43
just because you lack letters after your name should not dismiss your point of view. And you know, like I've said, you know, my time we're living with diabetes dwarfs, all their professional time with diabetes, by by orders of magnitude, we

Scott Benner 59:59
you You said earlier about those numbers about how people's a onesies are more in the sevens and a large percentage of them. And it struck me when you said that. Hasn't the goal handed down by the American Diabetes Association for a long time been? You know, similar? Yeah, to that number. So what that is,

Terry O’Rourke 1:00:17
it's on ambitious expectations. It really sells the people. It's like, the teachers in school when you're in primary school. Yeah, the teacher you remember the most is probably the one that expected the most out of you that challenge. You said, No, you're not gonna get off that easy, Scott, you're gonna do this, we it

Scott Benner 1:00:35
really makes me just feel like you get what you expect. So if you expect that a seven is good, then you end up with a seven. I mean, that just makes sense to me. I, you know, I think so often, I just got another note the other day from someone who, you know, said they were listening to an older show, and I was talking about goals and your Dexcom alarms. And I said, if you just keep pushing down your high alarm, eventually you'll find a way to stay under everywhere you put it, it just happens. Like once you can stay under 200. Cool, then go to 180. Now Augustana 180, I can stand on 150. It turns out that the way you stay under 150 is the same way you stay under 120 with just a little more insulin. And and and, and she said it really worked. She said I was so. So sure you were wrong about that when I listen. And now I'm doing it and it works. And I wonder if you didn't say to people because pregnancy Jenny says Do you listen when Jenny's on? I do? Yeah,

Terry O’Rourke 1:01:32
I was actually a client of hers back in 2012. That's crazy. So

Scott Benner 1:01:35
Jenny says all the time, how come when someone's pregnant, we can keep their a one see it under six. And I was like, gracias. Why is that not for everybody. And there are plenty of people, a lot of them listening to you and me right now, who have those a onesies are on their way to them are on their way to understanding that they're possible. And then the variability that comes with it. You know, I agree with you, like 70 to 180. I like it when it's like, looking at my time and range how great it is. But you know, then they don't tell you what their ranges, like, yeah, I've been on the planet for 48 years, my time range on earth is 48 years. I haven't always done great things with that time.

Terry O’Rourke 1:02:13
The other brings up the other another topic that I've got on my list is this idea of observing data.

Unknown Speaker 1:02:20
Okay.

Terry O’Rourke 1:02:23
Some people say, you know, I'm just not a numbers person, I don't like to look at the numbers, I don't like to look at statistics about diabetes. And I've observed myself that once you start watching the data, on a subconscious level, you start buying into you start to try to influence it to the better. Mm hmm. So I pull up my diabetes data every day. Every day, there's certain graphs I favor. But I look at it every day. And I often take actions on it and the mere act of observing causes me on some level to buy into improving it. Yeah. And you know, I, when I never took one, statistics class number one in college, in fact, I was late, I didn't get a college degree. I was 46. never took statistics didn't know what the heck of standard deviation was. And I figured it out slowly, through by use by, you know, the CGM write programs in the Dexcom clarity program. And I know I under I have a gut feel for what it is and how it works. And I want to keep it below a certain number.

Scott Benner 1:03:40
When you look at standard deviation, do you look at it for the day for the week for the month? How do you think about it?

Terry O’Rourke 1:03:46
I my favorite one is the 14 day AGP report out of clarity, okay, ambulatory glucose profile. 14 days is sufficient data to be statistically significant, but not so long that it hides all sins. Hmm.

Scott Benner 1:04:03
No, I agree. I like a shorter, a shorter window as well. You just put it perfectly as to why, you know, you can have a great day. And look, you know, it's almost like when you test when you know your blood sugar's gonna be okay. There's that's meaningless. You know, if you know, you had a great day and you look at your standard deviation go, ooh, 23. And then don't look at it for the next month.

Terry O’Rourke 1:04:26
Yeah. And then I've gotten into arguments online with people who know a lot more robust statistics. And they say, well, that's not really a valid that's not a valid proxy for your blood sugar variability because the data is not normally distributed. Okay, that has that has a meaning in statistics I don't quite get but it's not completely random. And so that it the standard deviation is not it's not a purist way of looking at it as a as a pure number kind of thing. But it's it's a, I think it's a reasonable proxy to show how much your glucose is going up and down, the lower the number, you know, the better off you're gonna be.

Scott Benner 1:05:09
Yeah. If the limit limit spikes limit dangerous lows, stay stable as low as you can. That's pretty much it, whatever you want to call those things. Those your goals. Yeah, you know what I mean? And, and people will come up with better ways to measure them. I mean, this variability and standard deviation is far better way of thinking about it than you had 10 years ago, or I had 10 years ago. And 10 years from now someone's gonna come up with something that's even better. And and I've

Terry O’Rourke 1:05:35
had, I've had doctors try to pull that thing on you about, oh, you're a one C is low, you must be having a lot of hypose. And I say what timeout doc? Yeah, think about this. Check out my standard deviation. I have a standard deviation of 20 milligrams per deciliter. I says, lows don't happen to be like falling off a cliff. Right? They're slow. They're gradual. I see it coming. I have I wear a CGM. Yep. Fact I have a I have a diabetes alert dog. He's one of my backups. And it so I finally over time got a few doctors persuaded to this, you know, so when they see my lower a one see they don't just get all worried about it.

Scott Benner 1:06:20
Right? Well, you know what I started building it's funny, you mentioned doctor so many times, um, I, I online asked people in the in the private Facebook group. You know, if you have a great endo or a great nurse practitioner, can you list the practice here? Because I want to make that list available online? like where do you go find doctors who get it? Who won't look at your, you know, your numbers as an example and say, Oh, you've you've been low too much when that's clearly not what's happening, like, where do you find those people. And a lot of them are starting to listen to the podcast, I get a lot of notes from doctors offices or nurse I listen to it's like, it's it's exciting, because eventually we should be able to spread what you're talking about out of to caregivers, and give people better expectations. Like maybe everyone doesn't. Maybe everyone can't take the advice, the way you just put it out there, because they're in the wrong time of their diabetes. But at least if their doctor knows about this information, they can watch them for when they're ready, or move them towards being ready to hear something like that. Instead of just saying, you have a seven and a half. You're doing great. Get out of here your crazy kid, and then that's the end. Yeah, you know, so yes. I'm hopeful about it, that it's gonna

Terry O’Rourke 1:07:36
Yeah, well, I you know, I I remember the Richard Bernstein camp. We deserve normal blood sugars. And saying that I can go up to 180 regularly, that doesn't fly with me. That's not normal. human evolution has decided what's normal on human evolution has determined that blood sugars are tightly controlled. In the non diabetic, tightly controlled, you wake up almost always under 100, you know, usually in the 80s and 90s. And you do have a certain amount of what we call hypoglycemia, even what I would call glucose normals, right?

Scott Benner 1:08:13
People hit not see you, I have to tell you, I think I'd you're starting to say this, I'm sorry to cut you off. You're the first person to say that on the podcast that had a big impact on me that people would type one, the people who don't have type one diabetes, often find their blood sugar around 64 for an extended period of time during the day. Tell me about they're

Terry O’Rourke 1:08:32
there in the early morning hours. Yeah, this this was this this. The reason I fell in love with the ADP report, I read the study on it in 2015, published in the diabetes, therapeutics technology published under their name, and they basically, they took a person they put a CGM on the person, so they could compare diabetes to what they consider normal. So they just basically said, okay, it's only one person, but we consider this person as representative of a glucose normal person, okay. And this person, it had like a 5.7%, under like, 65 each day, each day, but it was in the early morning hours before waking. And you know, I challenged one of my endos with this when I live back in San Francisco, and she confessed to me says, You know, I wore CGM for a while and says, I observed this to myself. She doesn't have diabetes. But my latest doctor said, Well, yeah, that's all well and good, but you have diabetes. You don't have the emergency metabolic backup, the glucose, healthy glucagon and all that. I said, Yeah, I get that but just watch it. No, I want to compare myself to normal people. I don't want to consider my

standard of care as the disease people. Well,

Scott Benner 1:09:54
that response points out what you said earlier is that the doctors goals is for you not to die, right for you to not get so low that you have a seizure and need help or whatever could come from that. And you have tools in place to stop that from happening. So your goal is different. Your goal is Listen, man, if I get to 65, for a couple of minutes, I'm not going to eat a bunch of food and drive my blood sugar back up, I'm gonna try ways to massage it back to where I want it to be, again, because I know 65 for, you know, 15 minutes for half an hour isn't the end of the world. It's not hurting me medically. And, and so I can do that. But as soon as you tell people a 65, or anything under 70, or whatever ends up being being said, is a panic situation than they think, Oh, this is dangerous, better high than low. I'll drive myself back up.

Terry O’Rourke 1:10:44
Well, if they're if their standard deviation is 60 milligrams per deciliter, which is twice what I think it should be. It's, it's more dangerous. Your blood sugar's swinging up and down. And if you get to 65, you could be at 55. In 10 minutes, you could be at 45 and 20 minutes. But if you have if you have a standard deviation of like 20 milligrams per deciliter, you're not likely going to go that low that quickly. Yeah, can happen, but not likely.

Scott Benner 1:11:12
Well, your point is 100%, right, in my opinion, because Arden is about to get her period right now. So she needs more insulin around food. And so she's been spiking more around food. And it's going to stop as soon as she gets her period. This stops. It's fascinating to watch how it happens for her. But so for the last couple of days, her standard deviation has been higher. And while it's higher, she's having more lows that need to be rescued before they come. But the five days prior to that when her standard deviation was in the 20s. She was never getting low. That's it? Yes, yes, she wasn't she's not bouncing is another way of saying right.

Terry O’Rourke 1:11:52
And guess since you don't go low quickly, with a low standard deviation, you then have a much longer opportunity to fix it. Even if you're not paying real close attention.

Scott Benner 1:12:05
You can still pop a little bit and then your mouth and see what happens. Do you do completely low or no carb? Or how do you handle your meals?

Terry O’Rourke 1:12:13
Okay, I got a diagnosis

18 two months, almost almost two years ago of coronary artery disease, okay. And so I was low carb starting in 2012. And I varied from you know, like 3030 grams a day up to 100 grams a day back to 30 grams a day. When I got the diagnosis of the heart disease. I adopted a diet with no grains, zero grains not zero cards but zero grains, no wheat, no flour, no corn. And I you know drop things like potatoes, of course, no bread, all that stuff. Yeah. So it's naturally cut my carbs down. And also the quality of my carbs. No bread is a processed food. noodles are a processed foods. Spaghetti is a processed food. And I understand why people like it. And I used to be that way. But when your life is on the line, and you're staring at the you know, the number one thing that takes down type one diabetics is heart disease, not not the diabetes itself. And I thought, Oh, this must be I'm gonna go, you know, what am I going to do? And I flipped back, right. And I've arrest I had the test that I got diagnosed on something called a coronary artery calcium scan to CT scan, they can actually see the coronary calcium in the coronary arteries. And that calcium is a is a proxy for the total plaque that's in your arteries. And that's what fills up and it ends up rupturing and you get heart attacks and strokes.

Scott Benner 1:13:45
When my my very good friend passed last year, that's that's how he died. He had a massive heart attack.

Unknown Speaker 1:13:51
Yeah, so

Terry O’Rourke 1:13:53
I learned through a lot of reading that the coronary artery disease the calcification progresses at a rapid level like 20% a year and so they said it's very rare for people to arrest it or reverse it. So I had the scan done exactly one year later in my score dropped Wow, not by a lot but by a couple percent it did not increase and it went down a little bit. So I took all the discipline that I learned with diabetes and I said okay, I've got this new game and my life's on the line What am I gonna do

Scott Benner 1:14:27
apply it the bread and pasta is what i

Terry O’Rourke 1:14:30
did i thought you know what, there's no meal that tastes so that tastes as good as a normal blood sugar feels. Yeah, yeah, just doesn't happen and I you can give that you learned how to like this. You weren't born liking potatoes and cereal. You will learn that.

Scott Benner 1:14:47
So how do you how did you say she ate those things in the beginning when you made the switch? What did you move to that helped you be able to maintain until you got to a place where it became everyday Do you?

Terry O’Rourke 1:14:58
Are you talking about the switch or Back in 2012, when I just limited carbs, or Yeah, later, and two grains,

Scott Benner 1:15:05
I think I want to hear about both. But like, what's the process like about you know, cuz taking out grains is very specific, but first limiting your carbs a little bit and then talk about the grains like, well, how did you? I mean, you had did you go cold turkey? Or did you nurse your way through it?

Terry O’Rourke 1:15:17
Here's my participation on the diabetes online community at two diabetes. I, I was a, I didn't participate and just read. I didn't sign up for an account. And I watched for like a year, full year before I signed up to where I would make my first comments. And there was something going on the car wars, or the local cars versus the rest of the world Yeah, of tension that was going on. And I was watching, you know, I wasn't certain. And then I thought, should I do this? And I thought, No, I don't want to give up my bagels. I don't want to give up my bread that you know, there's certain things I like. But then when I got the the adverse diagnosis, it was gastroparesis, by the way. Okay. I thought, do I love those foods so much that I want to die earlier than I want to die? I have to do indigestion and malnutrition when I just retired, and these are my golden years. And I thought, you know what, this is the time. And so then I did it. And I you know, I limited at first i limited to like 100 grams a day, which really isn't that much of a limit. But eventually, because I was having so much success with it. I brought it down to 30 grams a day. And I would do things like Starbucks breakfast sandwich that comes on English muffin. Yeah, I would just eat an open face. So I need half the bread instead of all the bread, right? So it wasn't like I was completely giving things up. And I eventually cut that down to only a half of a half, I suppose. And, and then and then I would go in and I wouldn't eat the bread at all. I just eat the sausage, and then the egg that's on that on that sandwich. And I found it was quite reasonable. Yeah, I didn't really need the bread. And the more reading I did about the agricultural revolution, which happened 10,000 years ago, which sounds like a long time. But in human evolution, it's a heartbeat. It's less than a half of a percent of our history. As you know, hominids and Homo sapiens. We didn't start eating wait until the last half of a percent of the time in our in our evolution. We learned this it's not something that was always deemed to be.

Scott Benner 1:17:41
Well, yeah, sure. I mean, back in the day like it, nobody was nobody was grinding up grinding up wheat and making bread out of it. Like you saying 50,000 years ago, when people were were our bodies were developing and, and getting accustomed to processing things. And it's interesting, isn't it, how we we've, we live longer through intervention. And so that feels like it's easier to not pay as close attention to your health because it feels like there's a pill or something that will help you go through it right?

Terry O’Rourke 1:18:11
Ark archaea are anthropologists, you know, discovering what happened around this agricultural revolution starting 10,000 years ago, and they saw they found skeletons of humans who predated the agricultural revolution. And they found that these these people they had better bones because they could find the bones and they didn't have cavities than their teeth.

Unknown Speaker 1:18:33
Okay, and

Terry O’Rourke 1:18:34
they and they had all their teeth they're there they're the dental arch in their mouth was big enough to house all the teeth that we evolved to have whereas nowadays we have braces and orthodontia and we have a lot I mean, I had horrible cavities as an adult. I've had very little dental work since I since I cut out a lot of the a lot of the grains a lot of the carbs and you know bread and stuff

Scott Benner 1:19:02
are you um Do you eat animal protein? Are you vegetarian?

Terry O’Rourke 1:19:06
Yeah, no, no, no, I I'm I'm an omnivore and I yeah, I I eat beef on a chicken. And it's, it's what my my my hardware evolved to like so it's like I kind of go against that code because it's But Mother Nature knows knows what. What's healthy for me. So

Scott Benner 1:19:26
when you make yourself a steak, what do you put with it? Like how do you sign it up and make a meal for yourself

Terry O’Rourke 1:19:31
on vegetables? Most commonly I could have you know mushrooms or or even saute onions and bell peppers or spice it up with some some hot peppers, right. Cabbage is another another good one. But yeah, so meat meat and vege

Scott Benner 1:19:51
Yeah, but no, no, um, no potato, no rice either. Is that right? All right, no bread, that kind of stuff is gone

Terry O’Rourke 1:19:57
and I don't really miss it. It just That's what's amazing to me.

Scott Benner 1:20:02
Well, I have to say that, you know, I've done low carb things throughout my life, you know, in short bursts. And you know, it's never been a lifestyle. But there's no way to argue that when you get carbs, like those kinds of carbs and sugar out of your system, about three days afterwards, it feels like someone turns your dimmer up a little bit. You just feel differently better, like your body's not working so hard to process food, I'm assuming is

Terry O’Rourke 1:20:33
starches are nothing more than a chain of glucose molecules.

Scott Benner 1:20:38
Yeah, so I'm probably using that point.

Terry O’Rourke 1:20:40
Yeah. As soon as you put bread in your mouth, the enzyme in your mouth called amylase immediately starts cutting those bonds. By the time that bread hits your stomach. It's already sugar, right?

A little sugar. It's a lot of sugar. How

Scott Benner 1:20:54
did the French stay so thin? They eat bread all day long. Seriously?

Unknown Speaker 1:20:59
Yeah, I don't know. I don't culturally, right.

Scott Benner 1:21:02
Yes. You know what I mean, though. Yeah. So I always wonder that they

Terry O’Rourke 1:21:06
do eat a lot of meat and veggies as well. Yeah. Drink red, red wine, which is probably good for you as well.

Scott Benner 1:21:12
Well, I think that whatever works for somebody. And and I don't mean works by whatever makes you comfortable. I mean, works by actually works. Yeah, I mean, I think is great. You know. So whatever is, if you're fueling a healthy lifestyle, however, you're doing it, that's amazing. I know, I have once or twice over the last couple of years, this is interesting that you enjoy the podcast so much, because once or twice over the last couple of years, I've taken it pretty hard from low carb people. I think they feel like when I say I want you to understand how insulin works. And I use the example that my daughter doesn't have diet restrictions, they feel like that means I'm pushing carbs. And I don't I don't feel that way. Like I Arden had a big house salad for dinner last night, you know, and it probably had 25 carbs in it because it had like she put some barbecue sauce on it or something like that. You know, like there were carbs in it, but it was beans and corn, lettuce. What else did I put in the shed a little bit of cheese not a lot. You know, and then that's that she doesn't eat very much. Now this morning, she got up and she ate french toast. And she probably won't do that again for two weeks. Like she you know, she kind of bounces around her eating. So all the stuff I say on the podcast, I believe I'm saying understand how to use insulin, then figure out what you want to eat and then use the insulin

Unknown Speaker 1:22:31
I

Terry O’Rourke 1:22:32
know you've mentioned about disordered eating among especially young young woman is definitely a thing. And you need to you don't want to promote that. So I think you've taken a good middle road. It's not exactly what I would choose, or I do choose for myself. But I understand that.

Scott Benner 1:22:50
And I'm also talking to everybody, not just you. You don't mean so I'm trying to be trying to be what I consider to be.

Terry O’Rourke 1:22:57
Yeah, well, My take is I interact well with some people who are in the ever heard the group called mastering diabetes.

Scott Benner 1:23:07
I haven't but

Terry O’Rourke 1:23:09
they they eat high carb, they very low fat and high carb and their carbs are mostly fruits and vegetables. Okay, we're talking like four or five 600 grams of carbs a day. And these are people, people with type one diabetes that are controlling Well, well, I was initially very incredulous that this could be done. But now I realized that it is it is doable. And that the key is not combining high carbs with high fats, which is what the standard American diet is. Okay, so if you're gonna eat the high carbs, just keep the fats to a minimum. They can't do both. And then the other thing is, is don't eat processed food. The extent you can avoid processed food, you're better off right? If it has an ingredient list and especially if you don't understand what all those ingredients are. You probably shouldn't be eating it. Yeah,

Scott Benner 1:23:58
I I do my best to give my family basic foods. You know what I mean? Like, like, just, I don't like looking at something and thinking I don't know how this got to this state. You know, is this the

Terry O’Rourke 1:24:11
jerk jerk diet? Just eat real foods? Yeah. Is that

Scott Benner 1:24:14
what they call it? That's a that makes sense. To me. I've actually, um, recently. It's been a couple weeks now, but I've been doing basically I guess, some people call it intermittent fasting or 816. There's our years that Yeah, eight hours a day I'm eating and 16 hours a day. I'm not and I find that that's been really valuable. I definitely think I'd like to hold on to that concept.

Terry O’Rourke 1:24:36
You feel more energy? What do you leave out the early early? Early breakfast

Scott Benner 1:24:42
I go from Yeah, I go from noon to eight and I very infrequently find myself eating all the way to eat anyway.

Terry O’Rourke 1:24:48
Yeah, yeah, I eat from I eat from like a 10 to six

Scott Benner 1:24:52
7am to 6pm. It's funny you said that because just as I said noon to eight I thought but 10 to six would probably oop, sorry. I lost My audio for a second you can still hear me, but

Unknown Speaker 1:25:03
I can't hear you.

Unknown Speaker 1:25:06
And

Unknown Speaker 1:25:10
give me one second.

Scott Benner 1:25:12
Sorry about that. Sorry, I you could actually hear me I couldn't hear myself or you. Just as you said that. I thought maybe 10 to six would be better. Even 11 like, why am I not messing with this a little bit? Like if I'm not finding myself eating all the way to eight o'clock because I do get hungry by noon, although not so hungry that I'm ravenous just like I'm ready.

Terry O’Rourke 1:25:34
I you know, it's like 930 coming up on 930 now and I won't eat for maybe another hour, right? I I do not. I'm not hungry. I've had my coffee, my coffee and cream in it. So technically, maybe I broke my fast but I don't have I think your body likes taking a break from food. Pudding something some feeding your gut every three hours to me is not healthy.

Scott Benner 1:26:00
But gives it a lot to do. And sometimes, you know, and if you have like you said if you have to eat you eat but you're making a good point you haven't eaten you've been up for a while your blood sugar's you mind, tell me what it is.

Terry O’Rourke 1:26:11
I'm 98

Scott Benner 1:26:13
right. And you

Terry O’Rourke 1:26:16
know, I have I have this little dance that goes on I you know the the the dawn phenomena slash feet on the floor syndrome. Yeah. And I always have to put my foot on I use loop and I just upgraded to the latest one. And they have something called overrides. And so I step on, I do a 200% override. We probably wouldn't like hearing that. But that's what I do. And I step on that for an hour and that that tamped it down. Or even better. I have a mini trampoline rebounder. I jump on that for 1520 minutes, and that'll knock it down right away. No kidding. it well. Not right away. But 1520 minutes. Yeah, it'll take it down. And actually, that's probably a better solution than throwing insulin add up because insulin, it from my understanding creates insulin resistance.

Unknown Speaker 1:27:10
You might try using insulin is that you'll need more insulin

Terry O’Rourke 1:27:14
in the long run.

Scott Benner 1:27:16
Yeah. But doing some exercise walking around the block. You make yourself more sensitive to insulin you do the glucose goes down and you become more sensitive, and it's a win win deal. Arden's been working out in the afternoon since she's been sheltered in place. And I you have to plan for it because she'll drop. Yes, she'll want to drop like 70 points. And so you there's ways I can I restrict her bazel prior to her eating. And that usually is really helpful. Although I got to see something incredibly interesting the other day, where we she just announced she was going to work out. And I gave her like half of this very dense protein bars like nuts and I don't know exactly all what was in it, but it was very dense. I said eat this before your workout. It was only a couple of little bites. And it was crazy to see how long it sat in our system overwhelmed the workout. There was no glitch is really interesting. There was

Terry O’Rourke 1:28:13
a good thing that I'd studied or

Scott Benner 1:28:16
Yeah, watch, like, I couldn't do the the Temp Basal thing leading up to the workout because she just decided to do it out of nowhere. So I gave her I think it was like 10 carbs. And I knew it was going to sit there somewhere for hours. And it went in there. She started to go down about the time she would have the distance between starting the workout. And then it just caught and it laid there for hours. I was like, Wow, that was really awesome. So I almost Pre-Bolus with food. If that makes any sense.

Unknown Speaker 1:28:43
Yeah.

Scott Benner 1:28:44
So those are really something uh, how do you just said you upgraded to the latest version of looper using the auto bolus yet or no?

Terry O’Rourke 1:28:53
No, it's not Not Audible. And I don't I don't even know if they feature. I don't think they it's still a hybrid system.

Scott Benner 1:29:01
There's a branch of it with auto balls because oh,

Terry O’Rourke 1:29:03
branch Oh, yeah. I haven't done any experimental branches. I'm just I just finally did my upgrade myself. Okay, all these years to figure out how to do this myself. And I was quite proud that I was able to do that. I had help. I had a mentor that that got me started.

Scott Benner 1:29:19
Yeah, a lot of nice people helped me when I get confused. So yeah. With the the app

Terry O’Rourke 1:29:25
or you're not using it anymore.

Scott Benner 1:29:27
No, she is. Yes, she is using it. Right. Okay, yeah, I am.

Terry O’Rourke 1:29:32
What is what does she think of it?

Scott Benner 1:29:35
She hates the Reilly link. Just the extra piece of hardware. She really hates it. It burdens are in a way that I have not gone away. Like I thought she'd get used to it. But every time I see her get up and she has to pick it up, she looks a little bit like she'd like to throw it across the room too. And so I'm super excited for horizon because horizons is going to have the algorithm it's going to be printed right on the pod right in the circuit board. So you won't need contact with your phone for your role. That'd

Terry O’Rourke 1:30:05
be part of tide pool loop.

Scott Benner 1:30:08
That's what I'm talking about is Omni pod horizon, which will be their closed loop system. Okay. It should be coming out. I think I think Coronavirus pushes

Terry O’Rourke 1:30:17
their algorithm and everything. Okay,

Scott Benner 1:30:20
so the algorithm that is running on your phone, and then has to talk through that link and get to your pump, that algorithm is going to run right on the on the on the pot, it's going to be built or built right into the circuit board. Okay.

Terry O’Rourke 1:30:33
So that'll be, that'll be our answer to that.

Scott Benner 1:30:36
Yes. Yeah. Because Because it's, you know, there's times where, you know, like, things are going along. Great. And then you look up and you're like, she's going up for, I don't understand why she's going off. And then you go look in the loops, yellow, and it's been this, you know, and it's been disconnected for 20 minutes, or then it's all sudden, it's red, and she hasn't been anywhere near it. And she needed an adjustment. And it's not capable of doing it because she's out of Yes, she's not looping because the Riley likes gone. Yes.

Terry O’Rourke 1:31:01
I think the automated insulin dosing is his breakthrough technology. Very glad. And the 36 years I live with diabetes, it's one of the top five things. Yeah, if not the top thing, because it's titled us every five minutes, it does the analysis, and dispassionately makes the change. Yeah,

Scott Benner 1:31:23
well, I can tell you that she's using the auto loop. And if I miss on her food, somehow, usually it's a Pre-Bolus. Miss. If I miss, as soon as she starts heading up, that thing just starts going. And it's bolusing and bolusing. And posting. So if you don't notice, it's only does I forget the exact breakdown, but it gives 40% of the recommended dose, and then keeps breaking down from there. So I think it's less and less as it goes up for safety reasons. But I've I've never missed on a bolus. And since she's had the auto balls, and it not stopped her by 200, at least. So it's not great. But if you screw up, it's like, oh, and it starts throwing the brakes on for you. You don't Yes, very interesting. Yeah, incredible. Really,

Terry O’Rourke 1:32:13
I just I'm, I'm so happy I was able to get on the automated system. When I did. And I, I would never, I would never give it up. It's a little bit amusing to me how timid the commercial operations have to be with their with their algorithm. With regards to the lows, of course, that's what they're worried about. Yeah. So they, the first is they don't allow you to set your target, you know, like below 120, for instance, or below 100? Well, my target is 83. Yeah, that's what I correct. And you're

Scott Benner 1:32:46
also in a good situation to to make that decision because of your low carb because you don't use much insulin to begin with, right. So if you keep a tighter tolerance at a lower number, you have much less likelihood of dropping than somebody who like aren't in this situation today who decided to have you know, French toast for breakfast. She had three slices of it. It was me know fry your mind, but it was 66 grams of bread, I think. Yeah. So it's that massive amount of insulin so that she can eat this french toast? And if we tried to stay at 83 during this moment, you know the slightest Oh, yeah, right. So So you've put yourself in a better position to keep yourself stable. Yeah, so

Terry O’Rourke 1:33:23
I this is what the Do It Yourself movement has really appealed to me that it allows people like me to be in charge, I don't have to go hand in hand to the to the device manufacturer to my doctor saying Oh, pretty please let me aim for normal blood sugars. It's just like, I got this, how you doing this.

Scott Benner 1:33:40
And it's important, because now is listen now is your it's your life now like to say that I think in a couple of years, these systems will let you pick the number I think that's true. But that's not helping you right now. You know, and

Terry O’Rourke 1:33:55
the Do It Yourself movement. They're iterating like mad IQ, they're changing. They're improving the code all that they don't have to go to the FDA, they don't have to go through all this laborious process and jump through a lot of hoops. They're able to make improvements and I in fact, I want to get this in before you enter here, please. It's the parents of children with diabetes that were the one of the backbones of this movement. It was their love for their children that was so strong they thought we should be able to do this and they did that we are not waiting movement was born and is still being felt its effects being felt today.

Scott Benner 1:34:30
Well, I was gonna say the same thing. And but I was gonna say an add to that is I hope that what we're not waiting did for CGM adoption and the FDA being you know, cool about things getting happening faster than they used to. I hope that same kind of wave of enthusiasm helps them look back at this loop data and say, maybe we got to let these companies fix these algorithms when they find a glitch. Remember when they when they find not a glitch, but when they decide, hey, we could be more strong here or this could do a better job. Don't make them put it back through a two year process again to get the change. Like I don't want to be using 2020 technology in 2022. Like, like, yes, like, you know, let's figure out a way to get it quicker. I think

Terry O’Rourke 1:35:20
the FDA has evolved, approved, and they have sped things up, you know, allowing the the CGM to be used in the hospital. I mean, that's a big deal. COVID-19 to do that. I mean, I could have told them that five years ago, they didn't want to listen to me, because I didn't have any letters after my name.

Scott Benner 1:35:38
Yeah, yeah. Now all of a sudden, well, you know what it is to you get into a pressure pressure situation, then all the sudden, the safety stuff drifts away a little more, because it's more imperative right now. Like we'll take a bigger risk, and so and right, not that using a CGM in a hospital is a risk. That's just common sense. But you know,

Terry O’Rourke 1:35:58
but in the past, people like me would go in the hospital, and they didn't want you to have that they didn't they want you to take it off.

Scott Benner 1:36:03
Yeah. That's because the person being charged your insulin, I'm telling you, that's because the person talking to you at that moment is thinking six years before, like, their thinking is coming from another time. And as technology moves forward, you need people to move with it. People who understand it have to be they have to be right there in the moment, and be able to say this is current technology. This is how it works. This is how we can implement it not seven years ago, when I was in school, these things didn't exist. So you know, Terry, take your CGM off while you're in the hospital, that that's just silly, you know,

Terry O’Rourke 1:36:37
oh, and I just think it's great that you're getting reports back from from clinicians to saying that they're listening to this, these patient discussions, because it shows things are changing. And there are people out there who are enlightened, and they're going to be part of

Scott Benner 1:36:52
changing things over time. I swear to you, I probably got a dozen emails that say, I went in, my doctor looked at all of my stuff looked up at me and said, Hey, do you listen to that Juicebox Podcast? Because your data looks like? It makes me so happy, you know? Not because the podcast is doing well. But because because success looks like something that people can recognize. You know, that's excellent. That's really exciting. Well, Terry, I enjoyed this very much. I appreciate you coming back on you were so popular, I had to have you back. So I don't think you're at let me leave you with this. I don't think you're as much on the fringe as you think you are. I think that you're on the fringe of people who speak up online. But that's not everybody. You know, what I mean? Like people online, are, are a certain segment, a smaller percentage of the total of people obviously know this of people have type one diabetes, I think most people who don't find themselves on Facebook, or in a, you know, in a in a private group somewhere or even listening to a podcast, I think they think about things sort of down the middle, sort of in a in a moderate, reasonable way. They're not, they're not offended. You know, if you say a lower a one sees probably better, you know, or whatever else comes with that. So maybe you feel like, you don't belong with the people who are speaking up all the time. And that's probably very true. So I think that makes your voice even more valuable. But I don't think that I think that if you reached everybody, you'd find you're more in the norm than you believe you are.

Terry O’Rourke 1:38:29
So interesting thought. Ponder that one. But it turns out I appreciate I appreciate you sharing your platform. These kinds of things always interested me. Because I know that I'm talking to more people like me, but I'm hoping to connect with the person who's right on the edge of me wanting to make a change. And then hearing something in what I said or what you said in our conversation that tipped them over to say, Okay, I'm gonna do this. It's exciting, because that's what it is. It's willful, willful motivation that makes it happen. Well, thank

Scott Benner 1:39:01
you for providing it today. You definitely did. I really appreciate your time.

Terry O’Rourke 1:39:06
And I'm sure I've overstayed my time here. So

Scott Benner 1:39:08
no, no, I've enjoyed editing. No, no, this is all going up it please go three hours if I have to. I just have to. I just gotta go I've I promised my wife I go girl, it's it's time for my tribute to the family. I have to go out and bring food.

Terry O’Rourke 1:39:23
Yeah, that's important.

Scott Benner 1:39:26
Well, I want to take a moment of course the thank Terry for adding his voice to the community of people living with Type One Diabetes. It's absolutely an invaluable voice and we were lucky to hear it not just once, but twice on the podcast. Seriously, go check him out on episode 53. If you haven't heard it, Terry's a he's a resource and a damn nice fellow. Thanks so much to dex comment on the pod for sponsoring the Juicebox Podcast. Let's go over it again because they paid for this and they deserve for you to hear it. dexcom.com forward slash juice bye My Omni pod.com forward slash juice box, get yourself a dexcom g six continuous glucose monitor and an omni pod tubeless insulin pump with those links. You know what I haven't done this in a while thank you to the sponsors for bringing us conversations like this with Terry. I know it seems like oh, no, Scott, you have a podcast that's popular. So you sell ads on it? Well, yeah. But I also have a life. And if I didn't make, you know, a couple dollars with this podcast, I wouldn't be making the podcast and you wouldn't have heard from Terry and blah, blah, blah. So thank you on the pod Dexcom Contour Next One blood glucose meter and touched by type one. Those are all the sponsors that are currently active with the podcast, even past sponsors deserve a shout out, they're not going to get one because they didn't pay for it. But you know what I'm saying they deserve it. I'm just kidding. There have been a lot of great sponsors. In the past, I'm sure there'll be more in the future. But the real staples for the show on the pod Dexcom touched by type one. And more recently, the Contour Next One blood glucose meter who I'm building a really lovely relationship with. These people are helping you to get the stories like Terry or, you know, when john Welsh comes on and talks about standard deviation for an hour and a half, you know, there's, you have to build a place for that to exist. And it takes time and a lot of effort. And I'm able to put that time into it because of the sponsor. So if you need these devices, please support them through the show, use the links in the show notes would be a big deal for me. And it'll help the podcast continue to grow along with your sharing of the show, which I can never say thank you enough for this month. May excuse me, it's June, this month, June. Look at me, I'm only a month behind on what month it is. As I put this episode up this month, June is about to become the most listened to month in the history of the podcast has a real chance for that. I'm looking at the numbers right now we are really, really close. five more days.

I think we're gonna make it. I think we're gonna crack a real milestone in June. And the podcast itself is about to hit a milestone in about a month or so. So anyway, I'm rambling. But that's because you guys are sharing the show. It's because you're going back and listening to all of the content. It's all of those reasons. And I appreciate it. What else anything? This is probably the longest episode ever the podcast. I just watched it tick past an hour and 42 minutes. Wow. I hope you liked it. I really enjoyed it. I think Terry's terrific at this point. Now you've got to be wondering, I've been listening for an hour and 43 minutes. Scott's clearly not saying anything anymore. Why don't I just shut this off? Do I have some sort of a weird compulsion to complete everything no matter what. And if you do, you should probably consult a psychiatrist over that. Because really shut it off. Why are you listening? There's nothing happening. You're afraid you're gonna miss something? Ah. What are you afraid you're gonna miss? You think I'm suddenly gonna restart the episode you can look on your account or It's almost over. You know, nothing else is coming. But you're still listening. I'm disappointed in you to be perfectly honest with you. If you're still listening at this point. Shut it off. Go to another episode. Go outside. Look up with the sun let it hit your face.

Unknown Speaker 1:43:42
Are you still here?

Scott Benner 1:43:48
All right, I'm gonna click the button and stop it. Let's do a countdown to see if you last through the countdown. I promise you that at the end of this countdown. I'm stopping this episode. Will you stop it before the countdown is over. You should by the way. 10 9876543

Unknown Speaker 1:44:17
a two

Unknown Speaker 1:44:20
and one

Terry’s first appearance on the show - March 2016

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