#828 Stephen Appleseed

Stephen has type 1 diabetes and a perspective that I adore.

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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 friends, and welcome to episode 828 of the Juicebox Podcast that was smooth

every now and then you meet someone who you just vibe with. Stephen is one of those people for me, especially around diabetes. I like the way Stephen interacts with others online about type one. I like the way he thinks about it. I like the way he talks about it. There is nothing that Stephen does, specific to diabetes that I've ever thought now. That's weird. I just, I dig him. I hope you enjoy this conversation. Stevens had diabetes for quite some time. And we're going to talk about a lot of different things. While we're talking about those things, if you would 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 healthcare plan. Or becoming bold with insulin. If you can remember that I would really appreciate it. I would also appreciate it. If you would take yourself to T one D exchange.org. Forward slash juicebox. Join the registry. Fill out the survey spend 10 minutes helping type one research. Move forward you can do that from your home at T one D exchange.org. Forward slash juicebox forward slash Juicebox Podcast what happened to my voice there that wasn't smooth. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored today by the Omni pod five and the Omni pod dash. You want an insulin pump, but you don't want to be attached to tubing. Then you want the Omni pod because you can wear it while you're swimming, bathing, sleeping running, and it's not attached at anything. Omni pod.com forward slash juicebox.

Stephen 2:07
My name is Steve and I have been tied back for 52 years today.

Scott Benner 2:13
Oh no kidding.

Stephen 2:14
Today is actually is at least as best I can identify it is my diversity. So that was kind of a funny thing. So you got on it's my anniversary, my 25th wedding anniversary. It's my diversity. And here I am on two spots. How old are you? So huh?

Scott Benner 2:32
How old are you?

Stephen 2:33
I got it when I was 17. Sons it be 69 this year this year coming up?

Scott Benner 2:37
Well, first of all, you don't look 69 Congratulations.

Stephen 2:41
camera has a weight so

Scott Benner 2:43
filled in your wrinkles. Steve, is

Stephen 2:45
that what you're saying? Yeah, I really got that coming few times this weekend. I didn't know you were so skinny. And

Scott Benner 2:51
we went to gosh, where were Arden and her friends are getting ready to go to college. So they all went out to get food last night? And Arden's like you should come because these are girls who grew up in my house, you know. So Kelly was working. So I went with him or sitting outside at this restaurant eating, and we get down into kind of the employees came out to eat at the end of the night. We're talking to him a little bit. And we got up and we said no, you know, have a good night. Thanks so much. And the one guy goes, Don't drink and drive. I think he was trying to be funny. And I said, Oh, I haven't had like the equivalent of a six pack of beer in 30 years. And he goes 30 years. And at first I thought his astonishment came from that I don't drink. But he goes, How old are you? He's given Dragon 30 years. And I said no. I said, um, I just turned 51. And he was like, he just was taken aback. And I was like now this is a guy. He's not trying to be polite to me, right. I was like, he really feels this way. I felt great for a half hour after that. I was like, I don't even look 50 What do you think of that?

Stephen 3:55
So my dad, my dad had a stroke. And that's the first stroke was in thanksgiving of last year. So we had them through that. It's been a wonderful year, it's my dad had a stroke and Thanksgiving, he started to recover. My brother helped where he lives is like three hours away from my me. And so we were kind of changing one week off when we can. So I'm kind of, you know, it's time to talk to you afterwards about making the transition because I'm trying to get him to make a transition, because he had a second stroke. And it was much less than first one but every time I go to the hospital with him with any of this, it's like, people walk in and go you're 96 and you know and same thing. It's like you can't be 96 He's up and walk in and strong and everything but I have to make that transition of getting him into a facility and he's not quite bought into it yet

Scott Benner 4:47
which Why would imagine my 96 years old you probably just thought he's gonna outlive me like what the heck yeah,

Stephen 4:53
yeah, well, I was supposed to outlive every part. not outlive anyone in the family, because I was supposed to be the old dead by 50 thing. Yeah. And that was because I was diagnosed in 7070. So at that time, it was like, you know, don't get a job that ask for any physical demand from your body after the age of 40 or so. And that is, you know, that was the way things were that

Scott Benner 5:18
did that actually drive your decisions like about what you want to do?

Stephen 5:21
It did multiple times. And yeah, it did definitely did that. And insurance, we were talking about that, that's this weekend, too, is how many of us from, you know, the 3030 year on or 40 are on and how many of us made really definitive decisions about and even people within the last 10 or 15 years? Definitive decisions about what kind of insurance do I get with this job? And what kind of insurance do I get with that job and making a decision solely on that? Yeah, and, and that when that's the reality of it, too, but, but it was a time the only thing good thing that happened to me when I was diagnosed was I got out of Vietnam, because I was 40 on the lottery list. And I took the big form and wrote, you know, four F on it, and mailed it in and sign my name. And that's all I did. And I never heard from him again.

Scott Benner 6:08
Wow, you are you were lucky. It was a low number you would have gone.

Stephen 6:12
Yeah, I would have at least had to sign up for something. Right. So Wow. Yeah, it was it was right on the edge of when it was tailing off. But yeah,

Scott Benner 6:21
right. How about that? Okay, so you're diagnosed, I just realized you were diagnosed a year before I was born. So. So you're diagnosed? It's very simple, right? Are you using even animal? Are you just using animal insulin? Is it beef?

Stephen 6:35
We were talking this weekend about the diagnosis, okay, my diagnosis was I was going to an internist, go to the hospital, do a four hour blood glucose tolerance test. And that was where you chug and chug about 12 ounces of pure glucose. And then they made sure you know where the blood sugar is gone. When I got in, I was at over 800. And they call the doctor and said, Do we really want to do this test? I said, Sure. So by the time the two or three hours was gone, they couldn't even get a bang. I mean, it was just I was, you know, and I got sent home and over to the doctor's office to pick up the book that says you're on your own. And here's how you do an insulin, and here's an orange Sia. And here's two weeks later, I gained 30 pounds. So I was watching every morning, seeing this get bigger and bigger and bigger, and my face was just astounding. So I bought into insulin early on, that it really did make a difference.

Scott Benner 7:28
So you're saying you're saying that even? I was gonna say even back then, but that seems backwards. But but in that time, the idea of, there's no direction, we're not going to teach you anything. You're on your own? I mean, do you remember anything being told you like numbers or amounts or?

Stephen 7:47
No, I mean, there really wasn't any a when C wasn't even around at that time. So that didn't happen till you know the latter. 70. So there was no other than your blood sugar when you do a fasting. That was it. Okay, so fasting blood sugar was the only thing to talk to you about. And then of course, you get the clinic test, you know, in the in the camp strips and all that peon stuff. And so it was how I don't know. I mean, I never I look back, and I probably never had never had anyone see over, I would guess, 6.8 In all those years, and then in the last, probably the last, they're probably I would say the last four years never had any one CEO or six, three, maybe. Yeah. And then in the last several years, it's been, you know, in the 55354. But given how accurate a onesies are, who knows what was going on, you know, I mean, highs and lows are probably, you know, variation of probably 5060 7080, even 100. And in that stuff, and still had agencies

Scott Benner 8:45
tell me Hold on January 1970.

Stephen 8:48
I was 17. So it was between my junior and senior year, lovely time when you make all those decisions about what you're going to do and where you're gonna go.

Scott Benner 8:56
And what was the day like with diabetes at 17? For you,

Stephen 9:01
it it was, I would say that it was fairly hidden. But I had some close friends around at the time, and that was good. I had friends from there were seniors a year before graduated. And so they were very supportive and not really caught my mind at that time. We didn't really comprehend what was going on, but they were really supportive. And I you know, thank goodness for them. But when that little group of friends disappeared, you know, suicide was an option. I mean, it was just you just didn't know you didn't know where you were gonna go. You didn't know where you came from. You didn't know what you were doing or where you were gonna go. So it was just, you know, head forward and keep your fingers crossed was basically and and then, I didn't have an endo until probably probably into the 80s.

Scott Benner 9:45
Really, you just did it with your general practitioner.

Stephen 9:49
He was an internist. So it was a specialist but it but you know, he was not an endo, but he was really helpful. He was really frank and straightforward, which is Not the case, in most cases, really striking for it. So things are going good. He talks, hey, things are going good. Keep it up. Don't know what you're doing, but just keep it up. And that was basic approach.

Scott Benner 10:11
Hey, against all odds, the this is working. So don't move because we don't know what you're doing. Did you find yourself depressed at that time?

Stephen 10:19
You know, we really funny, we kind of eat kind of reading up on it in, you know, got anal on reading and trying to find stuff. But reading up on it, it looked like the first year was kind of someone's going to happen. And so nothing happened the first year because I had friends around and everything. And by that second year, you know, it was 120. And that's a nice wall kind of a few times. And so and, and I realize that, you know, at that time, fortunately, that other people will be suffering if I did anything. So don't, don't do it, just go through it, get through it. And I, you know, went on to spend a lot of years in junior college trying to figure things out. But physically, it was a miss, I really have to say it was a mystery on how I got to where I was, I remember one situation, and I think about it now. And it just it just blows my mind. I used to get, you know, in that mood where I'd say I'm going to go running. And I would run the railroad tracks at night. And this was an active railroad track. And I was like, I had no idea what my blood sugar's what it was just, if I felt low, I may have to stop and do something, but I just how I got down the railroad track, you know, and then back home, you know, midnight, or I don't know, it's, but I think at that time, at least you could feel stuff and I could feel stuff. So I noticed when things were not working out, okay, you felt low, you kind of you felt Yeah, and the same thing with high too. So I want to pick

Scott Benner 11:41
through this for just another second. So after this happens, you're okay immediately friends around friends go off to college, because they have plans, you're not sure what to do. Because now you've graduated, you're, it's a year later, you have diabetes, no one's telling you what diabetes even is you're feeling your way through it. And it feels hopeless. Or I

Stephen 12:01
wouldn't say it feels hopeless, because I being ADHD and not knowing and at the time, and driven, I just got into, you know, the focus thing, I would focus on this, and I would focus on that and focus on this. And so, in I had nice diversion in junior college, because there were a lot of things that I tried. And so that kept me going to is that, you know, I'll try this career or I'll go this way. And a lot of that, like you asked before a lot of the decisions on whether I wanted to go there and I was kind of make money and kind of get insurance. And because I photojournalism was a big deal. Like the picture behind me, that's that kind of stuff I love doing. But it just, it wasn't gonna pay the bills, and I was gonna get insurance. So I didn't go those directions. I worked as a park ranger one time, and I had policemen and firemen saying you got to be a fireman, you got to be a policeman. It's like, well, yeah, I don't know. And I mean, it was a lot of those things was just drop it, forget about it, and go on. And I think that I'm not always the most positive person. My wife would laugh if I said that. But um, but you know, I just kind of tried to trudge through and then and but I think reading and knowledge helped a lot. It's just I would just, I mean, I probably got Bernstein's book, you know, a couple months after it was out. And I went into the doctor's office and said, I want to go on multiple injections. And here's a new window. And he says, And if he's a diabetic, and he says, why would you want to do that? And, and that was the perception at the time. So I was always pushing on that. And you know that that idea of going on multiple injections and why and the whole logic. So I just anything, I go to literally go to the bookstore and pull out the diabetes books and then see what on what's the latest, the newest? And then and that's I just started that and I kept doing it.

Scott Benner 13:50
So management back then because that's interesting. The doctor said, why would you want to do that is so you're you're diagnosed? It's a given, you're going to die before the natural end of of a life. Yeah, we're going to give you these injections in the morning and in the evening. And hope that we can make that time last as long as possible with as few problems as possible. But yeah, were it was a give up on day one for the medical community back then.

Stephen 14:20
Pretty much on being proactive about anything. Yes, yeah, it was more of a response. If there's an issue. You know, you're gonna have problems to your legs, you're gonna have problems, your vision you're gonna have, you know, I mean, it's just like you said it was just a given that that that was going to be a part of the future. And then we have a couple of groups I belong to we have people in 40 plus years and one even in 60 years. And it was like Vaughn, I mean, he's been around since you know, the boiling and the sharpening of needles. But we all really had the same perspective at that time was it's a roll of the dice and if you're lucky enough, things will work out and

Scott Benner 14:59
And then do you think that you're still here and healthy the way you are because you adapted, or because you were the one that the dice landed on?

Stephen 15:07
I think there's a combination of physiology and, and the fact that I was so anal about trying to figure out what was going on and learn what was going on. I mean, the multiple injections was, let's see, 82 or something like that I walked in, I go mph is just terrible for diabetic, I don't want to use this stuff, given that ultra Lanti was would work far better and more like a real person. And he just the doctor just didn't get it. It just didn't register to him that that was, you know, like you said, they gave it to you and you're supposed to do it and keep your fingers crossed, odds are, you'll be fine. And

Scott Benner 15:44
I saw somebody I saw somebody called NPH. Not particularly helpful the other day, and I don't know how I avoided knowing that that acronym existed in the diabetes world for so long. But

Stephen 15:53
yeah, that was, I call it the Yeah, I'll use a different term for but but it hell would be the last the H and the insulin from hell. I mean, it's just

Scott Benner 16:05
it's what they I mean, it's what they had at the moment. But it's still being like I hear it talked about because somebody was just, it was just given to somebody recently. It's really common in parts of Canada, for them to put kids on an MPH, because they don't have nurses at school. And they don't want to have to give the kids insulin during the day at school is the if

Stephen 16:27
they want to be able to predict activity for the insulin for the whole day. And not just one snippet at a time. Right. Right.

Scott Benner 16:34
But that's it's fascinating. That's something you you would not consider using that you were given a 1970s was handy. Yeah, it was handed to somebody yesterday, you know? Yeah. Okay. So we got through the I'm trying to go through what you already said so much. I just heard you say you were married. So how long have you been married for 25 years?

Stephen 16:55
Like, here's a funny story on that one is I proposed to my first wife by getting a nice outfit and getting a horse from the winery that I worked for, because they different Katelyn. And so I did the whole thing and I. But in the process, I went up to my park ranger friends and said, and it happened to be that my current wife was available to run the video camera to video it so she videoed my proposal to my first wife. And now we've been married for 25 years. So she knew me almost 1213 years before that. So we've known each other for quite some time.

Scott Benner 17:29
Did the the first woman say yes? Yeah. Okay, so you were married to her for a stretch of time? Yeah. short stretch of time. Yeah. Okay. And then that ended. And then you were like, I'm gonna get the videographer for my proposal.

Stephen 17:44
Yeah, so I mean, it. It was funny, because we were we had worked together at park rangers for some time. And I worked part time, and she was full time. But But yeah, and then I proposed to her then then Denver airport. And it was at night she was flying in. So you know, the train that in the Denver Airport just goes a long way down and a long way back out to the and so I rode the train all the way down with a big sign that says, Will you marry me and people are laughing and smiling. I got down to the to the gate and the gate was dark, and there was nobody there. And I had to ride the train all the way back with the big sign. So by the time I got here, there were a whole lot of people around. But yeah, that's the proposal on second one.

Scott Benner 18:25
Steve, you, you wouldn't know this. But you're one of the people that I measure myself against somehow? How do I want to say that? So that. So there are people online, obviously, that I've never met in person or people online that I have met in person. Jenny is a good example. Like I measure myself against what Jenny thinks of me in regards to how I'm doing helping people diabetes, because it is not, it's never lost on me that I'm an outsider. Because I don't have type one. And that, that my voice got to where it is now is random luck. You know, for the most part, there were plenty of people doing things 15 years ago that I don't even I don't know where they are anymore. Around diabetes. Those people were as passionate as I was at the time. But every once in a while I like I want to look up and think I'm doing well by these people. You don't need me right? So it's a weird situation to be in there was there was a time that Jenny told me that she thought of me as a colleague. And then that meant a lot to me. There are there have been type ones in the past who have said, you know, we sat and talked here for half an hour, and I forgot you didn't have diabetes. I took that as a really big compliment. Yeah. But I watched you online and you are thoughtful and measured and informed and you You come at things in a very balanced, reasonable way, and that you listen to my podcast means a lot to me. And that's an odd thing, because the first time I've ever seen you just not reasonably avatar picture, it's really how I've known you for all.

Stephen 20:15
Appreciate that. Yeah. I mean, it was, it's funny because I, there was one case a couple of weeks ago where I really got bashed for saying something, but it was something that if we were in the same room with somebody, I'd say it louder. And, and then tap it again. Last week, you know, the lovely thing about the numbers, you know, the, the calibration code versus it, meaning anything at all, you know, that whole thing that you know, that one that goes on the web, and, and everybody's just, you know, determined, and I want to keep so my thing I try as much as possible is to get the truth up there. So that people can figure things out based on truth rather than a myth. And, and you've seen the stuff I do on the Dexcom, is I tear it apart and put it you know, put it back together and test it and fiddle around with it. You know, why does it get stuck and tear it apart and find out why it gets stuck? And that's kind of a it's kind of nice being retired to do that, too. That's an advantage to being able to do that.

Scott Benner 21:12
So a second ago, were you talking about that? There are a there are a group of people online that believe that if you get a Dexcom G SIX sensor with the number 9117 on it, that it's not going to work? Well.

Stephen 21:27
Yeah. And the from coming, I work for Abbott at one time. So medical equipment industry, and one of the things you look at in terms of the audience that's complaining, is it repeated complaints from the same audience? They're the same people? Or is it a complaint that goes globally, and that calibration number is one that comes from a small group of people and repeatedly, just like the thing of getting stuck. So you know, that it's, it's a combination of, it may not be a great design, and then also the user having an issue with, you know, using the product, and understanding how the product works. And there were this weekend, I don't think once with the groups that I was with this workshop this weekend, did anybody say about an issue with the code? They said, Oh, sure, I have problems and it's, you know, the lifting and, and the adhesion and all that stuff like that, but hey, it, everything else works.

Scott Benner 22:18
It's interesting that um, I mean, I'm sure there's a fancier way to say it, but people, they think they know something. And oftentimes, what's happening is not what's happening,

Stephen 22:29
but they both get in trouble for it.

Scott Benner 22:30
I have no trouble with this at all. Because every time I see it online, I think you're having a problem. It's it's very likely user error. But I don't mean it, like, harshly. I don't mean user error, like you're doing something wrong, dummy. You know, like, I mean, that there's something about the functionality of the device, specific to your physiology, that you just don't you're not understanding right now. And who knows if I don't know, like, I don't, you don't need like, you know, when somebody says, I just use that. Here's my favorite one about Omni pod. I just got 10 Bad pods in a row. And I think, No, you didn't like that. I think that's just the historically improbable. And yeah, so yeah, so they get focused on the wrong thing. Or when people switch from MDI, to pumping, and they, they don't realize how poorly their settings were on MDI, right, they were over Basal and making up for by eating to they were eating lunch. That's something that they didn't realize, but in their regular life, it looked, it looked like it was working, then they moved to another system where that system wasn't going to wasn't going to work as well with that mistake. And then they go, and then what they say is, this pump doesn't work. Yeah. And I'm always just like, I get it, right. And it happens most frequently to newer people, people have been around diabetes a shorter time, or just moved to their technology, where I think a lot of a lot of compassion is necessary, because you get this weird mix of people online, right? And there's a weird mix of people listen to this podcast, somebody is listening to this episode right now has had diabetes for three days, and somebody has had it for 30 years. Their perspectives are different, what they understand is different. But how do you learn, hey, it's probably me, it's not the pump, or it's probably me. It's not this if somebody won't come along and tell you and then once I

Stephen 24:40
think sometimes the, the need, the need for acknowledgement is greater than the than the under than, than the misunderstood need for education. I mean, that's comes from me being a teacher too. And then and, you know, writing training programs, that's what I did for a career was and and you had to get people past that part. Or you did it One on one. That was the only other way that I mean, a lot of these people that are having those issues, if you went into a room and you talk to him one on one, you could probably resolve that without any problem at all, and get them back on the right direction. But online, it's, you know, it's really, really hard sometimes. And you know, I've had people write and say, Gee, thanks for doing this or note online, thanks for doing this. Because now it's I don't have that problem anymore. It's like, well, that's because you step back. And you said, Well, maybe I should look at the big picture. And then, because here I am, 52 years, and I still do Basal testing every month. And I'd have changes that need to be made every month, the current thing I'm in is taking care of my dad driving three hours, you know, and taking care of my dad at home now we'll be full time. But that's going to change the way things are at so I'm gonna have to redo basil. And there's so much that's based on understanding to get past the perception that you have that something's wrong, right. And that's, that's oftentimes overriding that something's wrong. And it's not me and like, Well, wait a minute.

Scott Benner 26:05
I think you alluded to this a second ago, too. But the other part is that it's just frustrating. And sometimes you just want to yell, you know, sometimes just want to be like, this thing sucks. Or, you know, i Nobody says, I've never seen anybody stand up. I go, I'm terrible at this. You know, but, but maybe that's how you feel. And the way it comes out is I think this code doesn't work as well as the others meanwhile, yeah. I mean, I guess in their mind, they think that I don't know what they think, you know, like, if you think about it doesn't help, how manufacturing help

Stephen 26:41
when you call tech support, and tech support says something like, yeah, we have a lot of people that make that complaint. And they're acknowledging that, that the complaints being made, but it's no real issue. And I think Stacey had Dexcom on and I asked her, I wrote a note saying that you got you mentioned the air, you know, the calibration code issue and the understanding about that. And I so far, I haven't heard answer, which probably means there's it's doesn't exist, it's not an issue. But at the time, and what the way it was being discussed was though it was a credible issue. Well, that one little statement is going to go across the board. And then everybody's going to like you said the easy fix is oh, I blame it on the device. Yeah.

Scott Benner 27:26
And then that's what happens online in general, not around diabetes, but everything. Somebody says something, somebody else agrees with it. And now suddenly, we have a rule. And you know, most people don't have that i i genuinely mean this. I don't think I can't recall a Dexcom sensor not lasting 10 days fraud.

Stephen 27:50
Like I just I had one this weekend, when I went to here I go to camp, right. And in this sensor is just I call when I get to the site, I'm calibrating calibrating calibrating. Doing are lovely, you know, to pair up calibration one right after the other, pushing it really hard. Just won't work, it'll disappear. And it loses signal isn't. So they finally said, Wait a minute, and something I did when I was driving. So something I did or something my body did when I was driving change the way that sensors work, to throw it out and start a new one. But accept the fact that there wasn't, it wasn't probably wasn't really a bad sensor. It was something either on me ergonomically doing something with it, or something in the environment that was there. Is it worth trying to figure out now? Right, just pull it out and start over again. But yeah, I think since the two six, I don't know, maybe two or three? Yeah, but I probably can explain why each one of those went bad. But I, you know, it's, um, it's like, the cleanest skin and you know, and don't use anything, and I use it just something like skin prep for years. And it's worked for me for 20 Well, almost 30 years, we figured out over the weekend. And it you gotta find the one that works for you. Yeah, and, and if it works for you to use it, and if it doesn't find something else, and I'm

Scott Benner 29:07
not saying that, like art and situation couldn't change, right? Because if you stop and think about she's been in high school for the whole time, she's six, she's gonna leave for college in a couple of weeks. And maybe I'll say hmm, something's going on here. But it doesn't mean that the Vice suddenly doesn't work anymore variables sort of beyond your your understanding of change. But having said that these people are in a bad situation right like they've got technology it's not it doesn't it's not working for them in the end they kind of don't care why it's not working right they they're not as invested in it or as steeped in it maybe as I am they just they bought this thing and they wanted to do what it says it does and yeah you know what it doesn't do it it doesn't work and and that it's a shame because little things like telling somebody I hate doing it but you're like hey, I don't know if you're hydrated well or not is a good example. And Well, what what are people's understanding of what that means? Yeah, I don't know, I don't know. So there's all these levels of information you need, if you really want to break a problem down accurately, and that also exists in bolusing. And understanding foods, I'm watching now, as you know, in real time, people are starting to use on the pod five. And it's fascinating, because the varied number of posts online that are like, I look what I figured out, and then you read it, and you think, Oh, you didn't figure anything out. But I see why you think that, you know, as, as a whole generation of people are trying to get used to an automated insulin delivery system. Whereas we were loop, you know, Arden were loop for so long before that. I know those pitfalls now, but I can also remember being in that position when she started, I was like, I think this is what's happening. And it's not, you know, so it's

Stephen 31:03
the T slim and the, you know, control IQ is, is there is so much that you have to do in the beginning and so much you have to do for the first couple of months, to be able to understand and get it right. And it's so frustrating to see someone struggle with it for a while. Cannabis notorious, and I'm gonna say it all out notorious for providing training sufficient to operate their products and install their products and everything. I mean, they're just absolutely terrible at it. And which is a shame, because the product is really, really good product. But if there was something done better in prepping someone and taking them through it, but they have improved over the last couple of years and documentation, but they rolled out, you know, the Bolus on the phone. And the Bolus on the phone was probably from a training design perspective was one of the worst things I've ever seen. And in terms of a medical product, or and it was, but the momentum is there with that product, such that people perceive it's going to be good. And I don't have to work to get it, you know, good or do anything on it, to make it help. But get it going. Help make it work with me. Help me work with it. And all those other little things that you learn as you go along. They don't it's not seen as a part of the process. And it and that's gets back to what we were talking about the medical profession is you can't just throw something at everyone and keep your fingers crossed, and then hope they figure it out. And if it gets a little better than just write it off as an improvement, right? Yeah, well, it's not fair to anyone to do that.

Scott Benner 32:35
I want to I don't know I've never articulated this, but so I might fumble through it for a second. But it always seems to me

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But it always seems to me like it doesn't matter if it's a device or if it's a medication or if it's direction from a doctor. The idea is, there's X number of people who are impacted by this. And if a certain percentage of them make the leap to the next step. Good enough, you know, and whoever gets left behind? What are we supposed to do about it, and everybody's kind of gotten there. It's funny, they have their limitations. And at the same time, their limitations are sometimes an excuse medical device company is going to tell you, FDA will not let us give you direction about how to use our product, they we can tell you how it works functionally, we can't tell you how to use it. And that's true. But is that? Is that something they're secretly happy about that they don't have to be involved in? Because if I was them, I'd secretly be happy about it to some degree, you know, I'd be like, Oh, I don't have to get involved in whether or not this person is hydrated or pinched up before they put their thing in are like I don't I don't have to be involved in that. That's for the doctors to do. Yeah, but then the doctors don't tell you that stuff either. So and they're

Stephen 37:01
even worse yet is they met on understand it, which is another whole piece of the picture that I mean, I sat in, you know, in rooms with doctors and nurses and such. I mean, I probably fired more doctors than I'd actually had over the years. And the reality is, is it this is one complex, difficult, even within the last three or three years, the physiology understanding the physiology has changed tremendously. And, and it's always changing. So it's got you got to the knowledge you have to use to flow with it. And the time it takes to do it is pretty demanding if a doctor is going to try to keep up with it. And I mean, it's going to take away from his business. But it's also going to benefit patients. But what's the like you said, what's the trade off? Is it you know, this little bit goes forward? And then that's fine,

Scott Benner 37:52
right? And also what happens if I spend an hour talking to somebody, and they never get it? Then could I have spoken to three other people in that time and got and gotten them to get it a little bit, you start getting to that that's a very human thing, right? Like a doctor is not a robot sitting in a room, excuse me waiting for you to show up. Like they're a person, they gotta go home, they got a family, but trying to live their life as well. And there's just no. I mean, I stared at this space for a while as my daughter was going through it, I watched house people who were trying to impact it would act, what they were trying to do what they thought the big problems were. And in the end, I mean, if you listen to the podcast by now and you're paying some kind of attention, like I think the problem is, for people with type one people use insulin in general is that they don't know how insulin works. And they don't know when and why to use it. And if you could teach them that they could probably grow from there, as far as their interest will let them.

Stephen 38:54
Yeah. And I think one of the things that driver that has been a good thing about, you know, the current situation we're in with communication and being with other people with COVID is the online communities, we got one with shader F Northern California, and they have online adult groups, online groups, for parents, with kids at this age online groups for parents with his cage, and they just exchange ideas. And it's been interesting over that time to see some of the people in that those groups actually grow and change and look at things differently. As they listen to other diabetics talk about stuff. And then there's like one group, that's three or four of us in there that you know, do talk a lot. And but they it just opens their eyes, seeing and listening to a bunch of other type one diabetics and I mean, it's really hard to describe that interchange and what you get out of it. But it's like this weekend, I wanted to get in all the stuff that I learned that makes it better for everybody. But if someone said he's just it's too much, and you don't think of it that way you go I want to fix this and so everybody receive stuff differently. And the interaction with other diabetics just seems to be one of those key items that is missing, that if we used it more, it would really benefit a lot of people. And I, the area I live in the Tucson area, the local health group, wouldn't put together wouldn't help me put together a type one group, because it just won't be enough to enough people. But every type one I've talked to in the community, too has a problem, right? And it's like, what do I do about that?

Scott Benner 40:30
If I, if I spend any time where this is all over for me, in hindsight, trying to think of what I did, right, and what I did wrong, or what I was hoping to accomplish. I'm certain at this moment, that the one thing that I've been able to do that is most beneficial for longevity, is to use this specific format, like a podcast format. And to not make it boring. I think that really is the most important thing, because I would look back over the years. And there were like, look, I don't know, I defining diabetes, as the series inside of the podcast is really, really important. Like there are so many words you need to understand what they are. But you can't like being honest. You can't spend your whole life figuring out what glycemic load means. Like you need somebody to just kind of like say, Hey, this is it. Remember this part of it, you know what I mean? But, I mean, I didn't rip. It's not a direct rip off. But it was Sanofi there was this lovely woman named Laura that worked for Sanofi years ago. And she got put in charge of making a diabetes online. thing, I don't know, like a, you know, a presence for Sanofi. And then they put a bunch of money and effort into it for a while. And then eventually, it just I don't know, they lost interest in it. But she did this thing where she put up a dictionary online. And it was it was all these terms about diabetes and their definitions. And all these years later, I remember thinking, that was an amazing idea. And I tried to find online, obviously, it's not there anymore. And I thought see that that was they hit on something there. That's really, really very important. But what happened to them, they put it online, they had this great idea, they put it somewhere the best they could and it died and died. Because when you when you put information on print online, eventually it becomes stagnant, and you lose the momentum. So what is the podcast though? It's constantly giving you new different content keeping you here, so that you don't lose track of the fact that the defining diabetes episodes live inside of the podcast.

Stephen 42:59
Yeah, that's true. I mean, take for example, you know, Gary's books was, I mean, you know, think like a pancreas. I mean, that was a pretty novel approach to doing it. And it is full of really good information. By here. So many people said, Well, I guess I should read that book, or I read part of it. And you know, but it's not presented in a form where people can absorb it in a way that they can use it or understand it. And yet, it's just a treasure or Adam's book with a 42 things, you know, it's like, well, Adams talk that talked about that for years. And he finally put it on a piece of paper and put it up. And it's like, it is like the one thing that comes up on the web, when you say, You know what impacts blood sugars and, and that's but those little trivial things. And the way in which you're right, the way in which you're presenting all these little things, to put them and make them part of the way you think and the way you do things really, really makes a difference. And I gotta give you kudos for that. Well,

Scott Benner 44:01
that's very nice. Yeah, I was just, I was trying to, I'm trying to put out there the idea that I've just seen too many people have great ideas. And then they bemoan, like, it didn't work. Nobody cared, blah, blah, blah, it's delivery, it's always your delivery. So even that is randomness for the podcast. Because, I mean, when I started making this, my wife actually said to me, she's like, you know, in our personal life, I notice people either really like you or really don't like you. And she doesn't it doesn't bother you, which is fascinating to her. But, but she's like, What if you just put this podcast out? Nobody likes you. And I was like, well, somebody will, or they won't, and then I'll stop making it. Like, you don't even mean it. I was like, but I think I think they will. And I'm good at talking. And like, you know, as I know how to talk about diabetes, like I understand how diabetes works, and I have a desire to put this information in front of people. It is partially because me You said it earlier, I don't know if we were recording it or not. But it is, um, it is difficult to know how to fix something, especially around someone's health or happiness, to watch them struggle with it and just know that they only need to understand like five things and this wouldn't happen. Yeah. Like, how am I supposed to live knowing I know that and somebody else doesn't know that that's hard on me. I have a

Stephen 45:28
related story that really hits what you're just talking about. And that is, this weekend, I decided that I was going to wear this sweatshirt, you know, and I was going to walk around with, you know, your stuff on just to see how many people actually listen to the podcast. And so breakfast one morning, I got the director of the group, I said, Can I just stand up and ask and, you know, I wanted to know, and I want to tell people about the podcast, right? So I said, How many people in the room listens to Juicebox Podcast now this room was full of probably around 100 people to raise their hands, and two other people and myself. And that was it. And I'm going well, let me tell you, and then I sit with the sales pitch. And I went, you know, on. And there was one person in the back of the room that just kept turning into that when you're in a room and this one person keeps turning their head and the smile on their face. And they're saying something, you know, this is Punchbowl, or whatever is going on? Well, I went back and I said, Well, I'm gonna make sure I go talk to him. And I went and talked to him. And he goes, Yeah, you know, it sounds like a sales pitch. And I don't really listen to podcasts. And I told the person I know the stories you've told, in this weekend, everything I've heard you say there's a podcast arranged to upgrades directly to it, or talks about the experience you're talking about right now. That's where you're gonna benefit I go, and, and I said, just give it a try. I said, You may hate the way Scott presents, you may have paid his sense of humor, I said, but the information you're gonna get is going to be worth worth it. If I just don't listen to podcasts, I go, it will change your life. And that's based on the other point I talked about earlier with Keith was, you know, young and confused and couldn't get on track and, and the podcast helped get him on track. Yeah. And then another person in there was the DIY, who listened to it. And then a lot of people that know about the podcast, but don't turning it on, which, for seeing a bunch of diabetics that don't open themselves, like you said, open themselves to learning and finding a way of getting that information which you're presenting to them in a way that they will receive it and actually retain it or think about it is really something that's magical about the podcast is right on the mark.

Scott Benner 47:36
It's your experience in that situation is exactly why expectation of what's happening. And I tell people all the time, whether they're sponsors that want to know how the podcast is going to help them? Or if it's just people are like, Why are we not reaching more people? It's the rule of 10s just always applies, right? You had to you had to reach 100 people to find probably 10 People who had heard about the podcast to find two people who actually listened to it. And so I have to reach multipliers of people to to make it grow. And that's sort of where another aspect of my personality comes in and helps with this growing, which is I'm incredibly competitive. Like, I know, this is diabetes, and I'm helping people but I really want to win. Like, Steve, you have no idea like, like, inside. I want to win. And, and, you know, there's that that drive that I have that some people have. I've seen people use it for, for good. And I've seen people use it for evil. You know what I mean? And I tend to think of my using my competitive nature to try to help people with type one. I'm not, not out there talking bad about other outlets or running people over, I wouldn't do that. But I want to win. Like when, when a company called me last week and said, Hey, we have this person available for an interview. Here's what here's our pitch for why they I think they'd be good on the podcast, and I agreed that they would be good on the podcast. And I said, Yeah, I'll do it. I was like, but I have to have them first. And they're like, why I'm like, I don't want to have somebody on my pocket. Somebody else already had on this thing. I was like, I just I just don't want to I was like, I won't. I won't do it second. And so I don't know that that's in congruence, right? Because it would still help somebody even if I lost 20% of my downloads because somebody else put them up already. But that part to me seems Paramount like to keep the machine moving, is how we reach 100 people to help two people.

Stephen 49:45
Yeah, and it is about momentum. I mean, if you know there's I think one one I think of is Mendoza and his blog. You know what I mean? He was one of the first to really have a diabetes blog that had really good information. They're really, really good information. Was it ever spread across? No, only the past few people knew about it. And it was really, really good information other people, you know, that used it to do their own thing. But that's years ago, and, and that was one which he had the momentum at one time probably to just take over, because of the way in which he was, you know, I mean, he approached like, Kelly, he was going to tell you, you know, what was going on and new things happening. And here's what I found out. But the format wasn't for it, you know, it wasn't, it wasn't a format that could carry on. But I went back last night, and I read one of his because I was looking at history of the blood glucose testing devices. And and the role that Bernstein played in making it explode in the US and, and his little guy, discussion of it was absolutely right on the mark. And here's, I mean, he was just a guy hanging out in the room and then saying, I'm going to put this stuff online. And he put it online. And it got to a lot of people and but it had no mechanism, I guess is the right word. No mechanism to get to the masses. Yeah.

Scott Benner 51:10
So it's funny. First of all, you're so tied into diabetes. Like you just said, Kelly, like everybody knew that you meant Kelly close and diatribe, that was very fine. But she's, she's a great example, a brilliant, a brilliant person. And, and putting out really good content for people. But there's also a part of me that reads it and thinks like, it's too smart. Like, it's not gonna resonate with some people. And I know that's a weird thing to say, because it's, it's really, it's terrific. I'm going to tell you a kellyco story that you will appreciate. And everybody else, I'll do it quickly, because you'll think it's amazing. I was in a room once with Kelly, and we were on a conference table. And there were 25 people and talking about a heady idea about diabetes, right? How to help people with type one on this if I don't remember the exact issue. And she had a laptop, and we were all talking and she was typing. And I was sitting next to her. And the entire time she was typing, I thought this woman is taking impeccable notes of the situation like that's all I could think of. And then something piqued her interest. And she kind of got the room's attention. And she started talking about this thing that we were all talking about. But her fingers never stopped typing. And I leaned back, and I looked over her shoulder. And she was writing about a different topic. While she was talking about another topic, and I was like, Oh, my God, I was like, I was like, this lady is a super computer. So like, so you have people like that out there. Right, who are passionate about helping? And what she does is that I think what she does is terrific. I think it's it's amazing stuff. But I think there's also something to be said for the fact that I'm a very approachable person. And that you are you would never be confused the thinking that I could talk to you and type about something. It's the same.

Stephen 53:09
Somebody like Kelly, the advocacy power that she has now entered into being an advocate. It's like second, well, at least my perception is almost second to none. I mean, it's, there's no question if somebody will probably ask Kelly about it, if they're thinking about doing something with regard to you know, any kind of law, any kind of changes any kind of legislative things to her because she's become a voice and an advocate. But it also took away from her involvement in the thing she was doing before. So she had to make a choice whether to move on or stay in the role she was in before. And now the online role has really started to expand. But I think it's neat to see the growth. But it really does tell you the demand. I mean, like you were saying this demand so much out of you getting involved in this. And it's why I haven't been more involved because I'm not ready. I'm not ready to step up. I can't you know, when I saw Manny and what he was doing, it was pretty simple. It was not complicated. But the effort and the, in the beginning to do to diabetes. It was, you know, astounding the effort he put in, and where it grew to because and then it outgrew him and took on its own little world. And he went on and he got involved in other things did

Scott Benner 54:26
more things. I do want to have Manny on the show. I keep thinking that invited him. But you know what the parallel here is, you know, your regular life when you look up and politics is a mess and you think well I don't better people get involved in politics. And it's sometimes and oftentimes because they're they don't it's a it's a mess and they don't want to be involved in a mess. Or it takes up all of your time or it'll it'll capture your life like there are a number of reasons why somebody asked me to run for mayor of my town one time I went and Oh god no. I don't want no but this is I say it on the podcast once in a while, but it don't go this conversation leads to itself. I mean, I, this is a full time job. I work 6065 hours a week on this podcast. Yeah. And it, it doesn't let down. I'm right now doubling my work so that I can go speak at touched by type one and a couple of weeks. And I can take art into college a week or two after that. So I'm, I'm doubling my output right now behind the scenes that you don't see. So that there's no gap in this podcast. And you think, Well, Scott, what's the big deal? Let there be a week where there's no episodes? Well, here's the thing. I have advertisers, they want their ads out, I want to do what I told them. If I don't have advertisers, I can't put 65 hours of work into this podcast every week, and you don't get the podcast anymore. Yeah. And I don't get paid, I gotta get a different job. And to be perfectly honest with you, I'm getting too old to change careers. So you know, like I'm, so that has to happen like that. And so are there people in this space? Who would be better at this than I am? It's possible. But if they're not willing to put the time into it, you're never, you're never going to know the difference. Like you won't find

Stephen 56:10
the tools for it. are around you right now. And they, I mean, for doing it. Right? And if you don't take advantage of them now, then it won't be there. Because, and you have to have the dude put forth the effort to do it. Yeah. I mean, I, when I look at, you know, what's, what are you up to? 730 Whatever it is right now, in terms of episodes, and then that means there's another, you know, 7080 90 100 sitting in the cup waiting to be poured into the pile. But, um, it I gotta give anybody who's involved in this kudos because it's enough to be a type one. It's enough to manage a kid with type one. But to go the extra mile to help others do it is just so valuable to the group to the community, that it's, I just don't stop. Can I say, Yeah,

Scott Benner 57:05
listen, I'm, I believe, not only am I not going to stop, but there's, I think the podcast has been up for eight years. Like it started in 2015. And January, it's 2022. This is the eighth, the eighth full year, the podcast has been running right now. We're in the eighth year. And I don't think it even got traction till about three years ago, like 2019 is when it started to like pick up. And I was incredibly proud of it prior than that, like, don't get me wrong, like the first year? I think I did. I think I did 25,000 downloads the first year. And I was like, astonished. And I would go to my wife, like every couple of weeks, I'd be like, Listen, if I can just get 100 downloads a day, I think that's growth, and then I'd come back and I'd be like, if I could just get to 1000 a week, I think that would be great, you know, and then I started telling her, I was like, you know, I think if I could get to 1000 a day, that would really be something and then one day, I was like, you know, if I could just get 5000 downloads a day. And I just kept going and kept pushing. And like, I won't even like I'm not gonna tell you how many downloads there are. But there's a lot. And and it's not enough, because you should have there were 100 people willing to go to a campsite to meet people with diabetes. And two of them are like, I know that podcast, I listened to it. And some are like I heard of it. But I'm not going to be bothered doing that. You know what I mean? Like, so I'm nowhere near ready. And this year of the show, if everything tracks out the rest of the year, the way I expect it to, then this year of the show, we'll have more downloads than the first seven years combined.

Stephen 58:47
That's just mind boggling. Yeah, I

Scott Benner 58:48
mean, just right. So so we're reaching more people and reaching more people. But the the barrier is still people and their desire to they want in for I hate to say this, but most people want information, but they don't want to do anything to get it. Yeah, right. And so you have to make in my mind, you need to make the podcast, undeniable, to the point where people are just like, alright, I'll listen to the damn thing. Like I've now heard about it from so many people. I'll just do it. You know what I mean? And, and that'll make me I think that'll make me happy. I think that'll make me but I just want people to have whatever level of health and happiness that they desire. I guess

Stephen 59:39
what's funny is in that demand you were talking about and getting people connected to something. It's like I was exchanging notes with Jennifer who runs the Northern California JDRF groups, online zoom groups, and they just had somebody from Australia join an adult group. And I'm like, if people from Australia are reaching out Then the same thing is happening. And it's just it's blind to us in the US in terms of people needing or wanting or looking for some help and living with this crap. Yeah. And, you know, you wish there was an easier way. But I think you've got a way that works. And it's too bad. Everybody that has stuff to offer can't get the same connection, right. But the exchange and the what's I mean, COVID has made a difference. I think that community is stronger now than it has ever been before. And the exchange, the ease, probably that's the best way we find the ease of exchange in terms of people talking to people about type one was made much, much easier during COVID, because of the Zoom groups and people talking and, and not having any not having to go anywhere not having any pressure and and the podcast fits right into that. Yeah. So it's you, I always wish that you could take all those people and put them in a room, but they're not going to be comfortable picking up and driving down going to getting in the room. Yeah, this is just the right seems to be the right mix for the community, you have to

Scott Benner 1:01:08
let go of that Pollyanna idea that the information is here, and it's good. They'll come because that's just not, that's not the truth. Right? The truth is, you have to make it so assessable that they don't have to I mean, look what happened like your to your point during COVID, every organization that did in person, things like big talks where I've, I've spoken in front of 600 people before, and it's a lot of like, until you do it. Like, it's a lot more people than it sounds like when you say 600 When you're standing up there. And, and I, I got this kind of weird pushback from somebody one time that's in the space. And I think they thought that I was I think they thought my podcast was growing because I was speaking at a lot of JDRF events. And the truth is, that's exactly backwards. You know, like, you don't go somewhere and talk and then 600 people sign up for your podcast, and you think great. 600 is not a lot of people and you're trying to build a big, big thing like this, it's a nice number. And I'd love for 600 new people to listen to the show today. I'm not saying that. But that's not a model, it's an end, then, these companies or these organizations, they shut down these in person events. And to your point, it didn't really, it doesn't seem to have heard anything, it might be the opposite, you know. And so you put on these big events with all this money, and, you know, you've got sponsors like pouring money into it, and you're only reaching 600 people at a great one. And I've also flown across the country and spoken to 150 people, and you know, it's um, it's just not a it's not a great use of resources. It's a nice thing for those 150 people. It's a

Stephen 1:02:54
funny part from the community side that people have to realize his being open, to receiving that are open to going and getting that can make a difference. I mean, I've got three people probably in my life that that I would say made a difference. But the total time I've spent with them, each one of them is what maybe three or four days in terms of hours. And, and but the things they said and the things they talked me talk to me about. And the guidance they gave me was so valuable that it changed my life. I mean, I think I play the CD I had when I got the pump. Genie was just told me something, some secret things about changing a site, for example, you know that you have to create a puddle, you have to fill the cannula, you have to do this for to work, right. And it's not even stuff that's taught today. And it was taught to me 30 years ago. But if she hadn't said that, I would not have no no changes when I change a site. I mean, when I change a site, it's like this. But that's such a simple thing. Such a little thing that was told to me, that it astounds me that how we do survive without gathering all this information. It's magic. I mean, but the community is such a big part of that because you can, like someone said on one of the adult meetings that said, you said that during the meeting, and it changed the way I did stuff. And it's like and it's made a difference. Just like the podcasts, you've gotten the things on the podcast where you said that one thing in that little moment, right, that little window and all of a sudden it changed my perspective and, and that interchange and being I think one of the big when we were talking about this earlier, one of the things he's a type one, you really have to be open to everything you have to you have to let it all come in and decide what's going to work for you. But don't shut down. What can come in because otherwise you're going to be left behind. Yeah.

Scott Benner 1:04:47
And see you're describing you're describing the perfect listener like somebody who's going to listen to all of it take the dog gets put on to effect and and so, but you still need this thing to help people who You aren't that person, right? And you and you have to understand that the information is the, it's the seed of the tree, and then the tree grows, and the leaves pop out, and everybody comes along right away. They believe that they need, right that they need. And then they run away, and they go back to their lives and live their lives, which is great. It's terrific. They shouldn't have to live their whole life in this space. And the problem is, is that you just, you just informed a whole group of people who could potentially help a new group of people. But then there they go. Yeah. And so somebody has to stay behind and replant the trees over and over again. Yeah, that's me. So I'm just Johnny Appleseed over here going, alright, you guys used up all those leaves. Let's give you another one. Because a new group of people is going to come in and be newly diagnosed, or, I mean, sometimes a lot of pride comes from for me from meeting people who have had diabetes for decades, and still have a big change for themselves. Yeah, I think that's, that's a really terrific thing. Like there's nothing better than grabbing somebody on day one and getting them going in the right direction. But man, there's something special about. And I've just had so many experiences, but one sticks out in my head over and over again, of a woman who had like she had, like, I think, five kids or something like that. And she found me, because she had come to the conclusion that she was going to die, that she had type one, and she went online. And she was begging people, she's like, I'm gonna die. I'm gonna leave these kids alone. I need to know what to do. I have to take care of myself. And I just spoke to her on the phone. I mean, for a half an hour, 45 minutes, maybe I have no idea who she is. I don't know her name. And then she called me back the next day. And she was really angry. And at first I thought like, she was crying when she got on the phone. And I thought, Oh, God, like, what do I do? You know, like, I just told her how to Pre-Bolus That's not wrong isn't. And, and then she was she was angry that nobody had told her before she started seeing her life as wasted time. Yeah. And, and as damage done to her body that some of it couldn't be recouped. And it was it was incredibly frustrating and sad to her. And so I just think, yeah, every time I see a kid pop on the Facebook group, and it's, you know, it's a picture of a kid at their fourth birthday party and they're eating and their blood sugar's are really stable and stuff. I think we might have given that kid a shot to live a good life and not to feel like a woman.

Stephen 1:07:31
Yeah, you know, full Yeah. I mean, that. You've seen the thing I posted online after 51 years, you know, that, you know, you gotta you gotta laugh, and, and some people, and you gotta learn from your crap that goes on. But also give yourself credit. I mean, whatever you do, no matter how small, you know, if you get something or you do something, and it makes a difference, take credit for you know, say, Gee, they did pretty good. I pat yourself on the back. Because this is an easy to maintain. 24/7

Scott Benner 1:08:02
I so I so agree with that. And I'll tell you, there's another spot where I'll, I'll reach around and pat myself on the back when the when the the narrative from the diabetes community was never tell anybody that you're doing well, because it makes people feel bad. I thought I thought that, that's 100% Wrong. Like, I'm not saying that. Like, you shouldn't jump up in public and be like, Hey, I'm good at this. And you're not like, Screw you. Like, I don't mean that. But I just thought like, why not? Why not share what's going on? Right? So that a people can feel hopeful about it. And be they can learn from it. Like, like, how great would it be if you thought like, this is just diabetes? I my blood sugar goes to 50. Every time I eat it stays there for three hours it crashes down, I saved my life. And then like there are people who live like that all day long. How great would it be for them to see CGM graph and think, Wow, that guy? Chinese food and that's what happened? Like, yeah, how did somebody tell me about that? Please? Yeah, and so celebrate the little stuff. Yeah, and just for your mental health, like when something goes, right, come and tell other people about it. And, and don't be embarrassed by it and don't and, and if there is a person out there, it's just kind of a big picture idea. But if there is a person out there that sees that, and it makes them feel badly, I understand. And it's no one's intention. But I don't see how we hide the good that comes from doing that. You know, it kind of gets back to that idea that I talked about a lot. We're, you know, the way we teach kids, you know, 20 kids in a room and three of them are a little doll and three of them are brilliant. The ones in the middle are all pretty average. And somehow we direct our stuff down towards the three kids at the bottom. And because we don't want to leave them behind which is admirable, but isn't there a way to not leave them behind and help those other kids. flourish. Right. And so that's, uh, but again, that was just in this space, whether it was in writing, or when Instagram became popular, so visually, no one would no one would share what went right for them. And I'm like, this seems completely opposite to common sense.

Stephen 1:10:21
But you know, one person I can think of that, that that did was was, you know, six to me when she had her blog going. And that, really, I think she's one person that made me understand you gotta celebrate the little good stuff. Yeah. You know, because that was the way she looked at stuff, Carrie. And, and, you know, it's a challenge. And it's hell, and it's saying, but hey, this one good for me today, she seems to always have, you know, positive about it. And, and when I met her in person, it was neat, because it was the same person. Yeah, that was positive about the little stuff, you know, the little things, she's loving it. And that's what is hard with this is that you, you have to be like you say, pat yourself on the back. But you also have to celebrate them too. I mean, you know, do some good. I'm saying that's great. You know, and, and go forward, don't go back and say,

Scott Benner 1:11:17
I Well, I was in an elevator with Carrie one time by ourselves. And I certain she thought I was crazy. Because I just started talking about how, at that time, my focus was not letting people down. Like, I didn't want to be doing the wrong thing. And yeah. And I just, I went on about it for a minute as we were in the elevator, right? And I think back on that time now, and she must have been like, What is wrong with this guy? But, but I just, I don't know, it was very apparent to me that my thing was growing. And that I was in a room with people who also had things that were helping people. And I was reasonably speaking with, you know, a couple other parents there. But I didn't have diabetes. And I just, I didn't want to do anybody a disservice. I don't know. I don't know. She didn't ask for that conversation. So she's a little taken. take so many years ago, now. I can't even remember how long ago it was. But yeah, it also you need to stay away from there was a little bit of that, um, what is that German word? Oh, my God, I'm not gonna think of it. There's a little bit of the Woe is me. In diabetes, there used to be like, where I'm going to just all say what went wrong for me today. And then I know, this happened to a lot of other people. And I'll get clicks, or I'll get likes. And

Stephen 1:12:44
it's like to be label, you know, I'm not gonna say the word, but the B label for what kind of diabetes you have. Yeah. And, and that is probably the I think one of the coolest, coolest things to have ever come out of medical professionals that label because it's a give up label. It's a label that says give up. But there's nothing I can do about it. Yeah. And, and you know, and I've seen people both on the podcast, or heard people on the podcast, as well, as soon as people in the Facebook group will finally let that whole thing, that thing that hangs on and go. And it's like, opens a whole new world. But just that one word. And what it's done to so many people is amazing. And if you like you say get past that, and move on to the good stuff. That's what opens the door, like, you know, saying, and it just astounds me that some, something so trivial like that, or that label can be so detrimental to so many people for so many years. I mean, it's been hundreds of 1000s of people that didn't realize that they could actually make a change and probably benefit from things that would help them

Scott Benner 1:13:51
it's a, it's a give up card, right? Like, I'll say the word so we're sure people understand what you're saying. But if somebody tells you you're brittle, they go on to infer that your blood sugars are going to rapidly rise and drop and there's no rhyme or reason for it. Nobody can figure it out. So, go, go live your life as best you can. Because it ain't gonna go very long. You're brittle diabetic. And really, the truth is, somebody should have said, Hey, I think we're using the insulin wrong here. You shouldn't be flying up and down like this. What if we try this and that's it. I mean, think about that scenario. That's a doctor at some point, looking at person in the face, and telling them this isn't going to work out for you. But it they're only saying that because they don't understand how to talk to them about how insulin works. Yeah, but it's like I Steve, I wish you knew me knew me. Like I'm going to interesting mix because I'm kind of a moron. And at the same time, I'm sort of not and that I on my own in my house figured this out because you talked about I mean, you talked about it Think like a pancreas today and, and a ton of other people out there who have good information, I am telling you with. I am not over exaggerating, I have never read any of that. I have to I don't talk to doctors with an eye on them giving me information, I looked at what was happening to my daughter. And I applied common sense to it. And I figured out how to stop it. And

Stephen 1:15:25
the one thing she said, and people do say that are really involved and, and in that going up and out direction with doing things with diabetes, oftentimes will say that, that, you know, the best clinical testing that you'll ever do is you. Right, and, and i That's why being open to it, even though like you say you're shutting it off. It's because it's a distraction for you. And it is a distraction from where you want to be. But I'll tell you listening to some of it is, is you do realize that you you have to take care of everything, you have to do everything. And whether the doctor says this or the doctor says that it comes right down to you have to do things. And and the ownership of it is really hard to grasp for many people until they feel like they have control. I think that's one of the things with the podcast, is you can't step away from where the future is. But you can't get to the future unless you take care of yourself now. Right. And I think that's a good thing. What you're saying is that don't be distracted by what somebody is saying about the future deal with now and improve the now. Yeah. And that you then you do focus on that

Scott Benner 1:16:39
right now. It's in me, you're living in a number of realities, when you have diabetes, right? You're, you're you're being told something from the past, that you kind of have to sift through for the good parts and leave the rest go. Because my poor mom, you know, her blood pressure's you know, not doing well. And the doctors like I don't know what to do. I don't know what to do about it. At one, I'll tell you, somebody said to me, a nurse said to me the other day Fascinating. Well, your mom has heart disease, those things don't get better, they get worse. And that was her given up like oh, your mom's blood pressure went up, I guess she's done, you know. And I said, I called the doctor and I pushed. And then I made them send a different doctor. And the different doctor happened to be younger. And he goes out why she's taking this old medication, took it from her gave her a different medication. And she's I'm going to talk to her later today and find out her blood pressure is lower, right? So was my mom's old doctor useless? No. Did he know everything? No, because he got stuck in a time in a moment. And I don't want to be stuck in that time or the moment. Yeah. But I'm also not just a reposit territory for diabetes information, I'm also helping my daughter live with it. So I'm sifting through the past. I'm living in the moment. And I'm trying to look forward with what's coming. And I want to do well now while transitioning forward without leaping so far forward, that, you know, you don't want to what is it, you don't want to out kick your coverage, right. So like, I don't want to I don't want to be so far forward that it's detrimental. But I don't want to lose track of I don't want to lose track of what's coming. Because algorithms I think are going to be a big deal for people, I think, faster acting insulin, if they can find a way for it to work for people consistently, without burning, you know, for the ones who have like burning from it. Here's the fifth big deal,

Stephen 1:18:34
just quick, take your finger and put it on the site as it's being gone in. And now that will diminish it significantly.

Scott Benner 1:18:42
So, so with a pump, what do you do with a pump,

Stephen 1:18:45
and you're getting loom Jeff which will use protect, I use loom Joe and I found that if you put pressure on the site, it's a tolerable pain. It's not that that sharp, you know, pointed pain that's there. And then also, as I swear, you should put a decal or put a tattoo or something on every spot that you get that and then just stay away from those spots. And it works better. Really, you can have a discussion this week and while people mix it, but I found that if I just take and put pressure on it, that will help diminish a significant amount of pain. And it worked for someone which and I don't know how I found it. I don't know what I was doing. But that's one of those little things that you want to speak and scream to a group who's on Well, if they can get on them, Jeff, but I that's what drives me is if you hit a trigger, which is you say something that's something's not working, and I want to say well here you can do this to fix it. Or let me to go look or let me read and I'll we'll figure out how to fix it. But that's my drive and that's why I kind of like I'm almost I use the term anal but I'm anal about finding out why something works and why something happens. And that's been an advantage for me for 51 years because of looking at things that way. And I'm really fortunate that that has a case, but also at the same tone, I get a lot out of you carrying the message that I have tried to carry for years, and the message to a lot of people that can make some small changes and have a big improvement in their life.

Scott Benner 1:20:23
No, I listen, you probably worked harder at it than I have, because you were doing it a few people at a time, get only maybe 100 People at an event or a couple people you knew online that you spoke to or something like that. That's hard work. Like that's, like, that's boots on the ground work being done trying to trying to help people, slowly, I just, I mean, I got to the point where I saw, like, I saw what the blog did. And I was like, Well, this is good. But it was it really was my competitive nature that made me just think like, how do you reach more people? Like how do you how do you how do you reach more people? And and it's interesting, because I mean, blogging, for instance, like I didn't know, like, there was no financial reward from blogging at all. It wasn't trying for there to be one and you know, back then you could like get a Google Adsense ad that you made $50 a month off of or something like that. And my wife would be like, That's a waste of time, like, what are we going to do with $50? And I was like, I know, like, that's the effort I'll put into it like I could, I could go Panhandle $50, like easier than I could make it this way. And I really did only start taking ads on the podcast, because the time constraint. And my wife was like, Look, you can't like, You got to work. You know what I mean? Like, you have to make money. And I was like, No, I know. So. But yeah, it's it's interesting how, I mean, there's how many people like you that I don't know, who are out there trying to do the same thing. And not that this is don't take this the wrong way, please. But what you said to those people that day, it's not available anymore. Like it's in the ether now, like you help those people, which is beautiful. But that's not you're not there.

Stephen 1:22:07
Yeah, yeah, like the

Scott Benner 1:22:08
next person that comes along, you're not there. And then what happens? And that's why I think of I mean, honestly, right, I can make the podcast for Arden, like, my, my goal was that show, I'm hoping she'll just listen to it one day, which I'm sure she, I guarantee, you know, you're gonna have to pay her to do that. I'll be, she'll be like, Oh, I miss my dad's voice. And she'll like, I'll try the stupid podcasts. Like I That's what'll happen. But, but it's all here, like the way to take care of her is here. And, and it just so happens that if you let go of the idea that there's Bertel diabetes, or that your diabetes may vary, or whatever people say, to try to explain variables in the past, because they didn't have a deeper explanation for it. The truth is, is that what works for Arden will work for you. And it'll work for anybody really. And all it is, I mean, I joke with Jenny privately, all the time that this podcast should be 10 minutes long, should be one episode, it should be 10.

Stephen 1:23:04
And it is it, it's really about perspective. And knowing the options, I mean, and once you get the perspective straight, and you understand the options, and all sudden the whole world opens up, and it makes it easier. But that's true with almost anything to I mean, but the diabetes, particularly as the obstacle that's in front of you, oftentimes is too heavy and too big, to step around and go, Oh, I could do this, this and this. And, and that's one of the challenges if there was one person at the meeting that was talking about, you know, the emotional part and dealing with the emotional part of it. And, you know, I, I really wanted to walk up and hug her and just said take credit for the good stuff, is because the she saw that she was so caught up in what wasn't working, right. And she said it multiple times and times over there that, you know, good. And this event was perfect for it because she's seeing other people go through similar things and saying, Oh, I can't get around that and go shoot for something else. And I that was nice to see, by the way Baris, you have to interview Janie from bare skin metals, you just have to

Scott Benner 1:24:08
Oh, that'd be wonderful. Anybody can answer just a statement and a question. And then we'll wrap up here. So I don't keep up with the amount of people that I've spoken to privately whether it's in an event or something that may get you in there, like here's what's going wrong, and they start talking about I event I first I listen, because it's how they feel and they should be allowed to get it out. But then eventually ended up saying to them, none of that matters. Like this thing you're so focused on doesn't matter, like, let it go. Just let it go. Focus on this. It's timing and amount. It's the whole thing. Use the right amount of insulin at the right time. These things are gonna go correctly understand different impacts, and then stay ahead of them. work ahead of diabetes. Don't let it get ahead of you like it's all in the Pro Tip series. Do you agree Stephen? The Pro Tip series covers me

Stephen 1:24:59
In the purchase, or you have to get your head to the level, being able to do it. And I know some people jump too fast. But yeah, I mean, the nitty gritty is there. Yeah. And the nitty gritty is what's going to help you maintain and be good at it.

Scott Benner 1:25:16
You know, and it's easy to say like, somebody's all wound up in the wrong idea. But if they can't get themselves, excuse me out of that idea, they're never gonna get to the next part. So then I thought, Alright, well, I'll have a therapist come on, and do that, like so. But then you think that's easy. You think it's easy to find a therapist who's thoughtful understanding vibes well with me, like can hold a conference, I must have talked to five of them before I was like this lady Erica, she's the one you know what I mean? Like that, like I must have talked to, I don't know how many people before I realized, like Jenny's the one. Like, it's Jenny, there's something special about her. When you blend her with me,

Stephen 1:25:57
that helps. If you have a chemistry makes a difference.

Scott Benner 1:26:01
It's a big deal. And so you have to be able to step back once in a while. And, like, it's easy to say the podcast is a compendium, but you can't just you should see the people I have to turn down. Like because I talk to them, like, Oh, you're not right for this, like you're a great person, or you're lovely. But your story has been covered already. Or the way you talk like your speech pattern won't vibe with mine, like I've had people on who I thought were terrific. And I sit here almost with my hand over my mouth, because I'm like, I want to jump in and they're not done. And like, they just don't work with my vibe. And it's interesting, I

Stephen 1:26:39
think one one is, I love the fact that you actually took a suggestion of interviewing doctorate a D for me and went for it. Because, you know, every once in a while, you'll get that gold mine. And he's an example of a gold mine. That works. And yeah, I mean, you guys hit it off, you know, just so perfect from the get go. And, and he his, and his perspective is similar, even though he's been in the in, you know, been doing it for years. I'm just amazed that his perspective, perspective is good. But finding that person and finding I, you know, he's got a couple of presentations on Facebook that I point people to, and they're like, huh, I don't know, you have to listen to the whole thing. And you have to go through it. And you have and and I send people when they talk about baseballs, I always give them a link to the to his data presentation that's online, because it puts in perspective. But boy, the chemistry that you guys had, I didn't expect that to be honest that the chemistry you guys had when you got together was was, you know, great. I mean, I'm pulling

Scott Benner 1:27:42
up the episode because I want to mention what number it is here. See if I can find it real

Stephen 1:27:46
quickly. Doo doo doo doo 541 part

Scott Benner 1:27:50

41. Okay, so if I remember this one correctly, it took us a half an hour or so to get to know each other. And then we kind of went over high level stuff that everybody talks about. And then in the last 45 minutes or an hour, it just flowed. It was amazing. And I was so thrilled with him. And he, you can even hear in his voice. He's like, hey, there's some guy on a podcast. Like he's thinking about this, right? You don't even it was

Stephen 1:28:21
on an ask the endo month ago. And he laughed when I told him I said, you know, I'm the one that sent your name to Scott. And he laughed. And you could see in his response, that he really enjoyed it when he and that doesn't often happen. But he's just a treasure. I mean, this.

Scott Benner 1:28:41
Yeah, we need we need to talk to more people like that, for sure. We need to keep building up this thing. I have to remember that older content can fall out of favor with people. And there's no reason for that, right? Because the truth is even like think about it this way, every great television show that needs to be made, has already been made. And yet they keep making more like if you if you want to hear about like, I don't know, if you want to be entertained around the idea of liberal politics, you don't have to watch a new TV show, go watch the West Wing, right? If you if you want to know about war, you don't have to do this. Just go watch mash, like like, right, but that's not how these things work. So you have to keep creating, and you have to keep pushing content, especially in this world. Like sometimes it's funny. Some people say to me, Why do you put out four episodes a week? And some people are like, can you put out five episodes a week? And I'm like, I don't know, which is like the right answer, but I can answer both of them. For people who want the content. I'm thrilled that it's there for them. And for some people were like, I can't keep up. I need you to stay here for yourself right for you for your own health and happiness. I need you to stay here till you get what you need. And then I need you to go tell somebody else about it. I need you to hear it. Half of this, that you have complete thoughts that you can share, because the worst thing that could happen is that somebody gets a half baked idea, and then runs off for it and doesn't work for them. And then they start telling other people about it. So I need you here because I don't want you to look up and think like, oh, the podcast is, he took the summer off, I guess, like, and then you never come back. You know what I mean? So

Stephen 1:30:21
well, hopefully, you're not feeling pressure, but rather feel like it's making a difference because it is. So I love it.

Scott Benner 1:30:28
It feeds the feeds the healthy and unhealthy part of me equally.

Stephen 1:30:34
I don't know what the timing is. But we're seeing I'm seeing a lot of the 504 stuff going on right now. And I want to scream and yell because there's a 504 site, that website and that's all it's for. But if and I the only reason I thought about it, because I looked at 504. If somebody's looking for resources, ADA has a, an I, there was one on my list of one of the things to say, the ADEA has a diabetes management plan up there that the doctor can fill in and give you all the support, you need to go in and get your 504 nailed down. And it was done. Of all things, it was done with parents and doctors filling making this new form up. So it was a really different approach to it. But, you know, it's that time of year when I will have to fight for that when

Scott Benner 1:31:21
I had to make Ardennes all those years ago, the first time I took everyone's examples, read through them and just took out the parts that I thought made sense I put my own together. And then I kept adapting it through the years as she got older and older. But this sounds much better. And and it's an underused thing to a lot of people don't want to have that fight either. They don't get involved in it. They just hope for the best. And

Stephen 1:31:45
most people think of that diabetes management plan is just a form that but it ends up being a toolkit. And the way that they put it together now, and they only did this last summer. Okay. And because I see so much up there are people asking, I don't know how to deal with a 504. I don't know what to say, well go get your doctor to write it down. And then like you did that to get you have to have the power behind. Yeah, but it's just that time of year. And that's what made me think of that, because I was like I watched a video of the discussion of putting it together and why they put it together the way they did. But it's a great tool. And it's of all places Ada had it, you know, and they usually don't great resource. If you've gone

Scott Benner 1:32:26
through a lot of CEOs or presidents, I don't know what the designation is. But every time I tell him I look up, there's somebody else running that organization. It feels like to me, but yeah, I I mean, that's a that's a great, that's a great thing. I'm glad you brought it up, because it is it's definitely valuable for the people who need it. Is there anything else that we haven't talked about that you wish we would have?

Stephen 1:32:47
I got a whole list right here. You can come back some days, you know, you see me online, you know,

I like my diabetes, simple things I cut and paste from his for like 14 pages or something like that, where I just and it just links of places to go find information and that I collect information from but I this is I feel better than I felt in the beginning. I don't I'm not not nervous. And I don't think there was anything missed. Other than saying people give it a try. It's the podcast is. And all the only one thing is a request. Okay. And it was probably from everyone is if someone could set up a better search engine for the podcast. Yeah, that search engine for the podcast is really poor right now. And I don't know when you're working on it or not. But it's it's a challenge. But the groupings that you did, it'd be cool to have those groupings on the podcast site.

Scott Benner 1:33:43
On the website. Yeah,

Stephen 1:33:45
the website actually on the website. Yeah.

Scott Benner 1:33:46
So the website at juicebox podcast.com. The search function, that it's a Squarespace site, the search option that Squarespace makes is I mean, it's terrible.

Stephen 1:33:58
I have no idea. I haven't figured out exactly what the logic is behind the finds

Scott Benner 1:34:02
it sometimes you can't capitalize things or you can't like it's the worst thing. And I think the

Stephen 1:34:08
fun one is that the search gets done. It shows it on the screen, and then it disappears and says there's nothing. That's the good one.

Scott Benner 1:34:14
Yeah, so I've sent a couple of notes them over the years, like, is there any way you can put effort into this? So if anybody knows how to do a better how to set up a better search engine on a Squarespace site, please let me know.

Stephen 1:34:25
It is a great resource, just go up there and look for stuff. I think it's a great way to discover and that's why I put together some of the websites once I found and I just give people a number and then have them sign this to the list that we made the little like visual reference are the ones that are on the Facebook page that are helpful, right. Yeah. Okay. If there was a way more direct way to get to those, like when you're on site or something like that, that list was actually linked. So

Scott Benner 1:34:53
yeah, there's so there's little limitations like podcast apps and audio apps in general have limitations like it would be great if I could just group them together. But you can only group you can only group podcast episodes together by season. And so I, you know, I obviously didn't have the foresight to make the entire defining diabetes series in one year,

Stephen 1:35:13
or we used to just take like a PDF and make a PDF and post a PDF, because it had active links in it. So that active link was enabled use like a, like a table of contents, right. So when you click on the Table of Contents, it goes to the site, but it was a different, I always had to make a different page when I was doing the training, because I couldn't get like you said it couldn't get the index to work cleanly. So I would just make a different page and post the page of so that's,

Scott Benner 1:35:37
I 100%. agree with you. And the I don't have the I don't have the bandwidth for it. And and the other, there is another part of it that I think there might be a benefit of which is it sort of forces people to bang around inside of the podcast. Yeah. And therefore they might find stuff, that it's also very interesting. And if you've ever heard me say this before, but the management stuff in the podcast, which I know you appreciate, and I think is terrific, I think it would help anybody. It's not the most popular content in the podcast, it's usually just conversations with people that are that are most popular. It's not by a lot. But what I've learned is that there is a audience that listens to the show, who I will never physically see in any way. And there's an audience that that exists more in the Facebook world for the for the show. And those people often have two different desires. Yeah, so somehow the people who are real management focused end up on the Facebook page, and the people who are more like, I want to hear people's stories, I just never know who they are.

Stephen 1:36:49
Yeah, so. But yeah, like I told you the story this morning, when you're hearing somebody tell stories, you know, at a group of bunch of a diabetics, and you're hearing these stories, and they're, they're the same ones, there's a podcast on you want to go? Well, here's the number of the podcasts you can go listen to, to get something out of it. Because it almost, there wasn't one story that someone told or, you know, insight that someone gave, that there wasn't hasn't been a podcast on it. And, and that's part of the power of the podcast, you

Scott Benner 1:37:20
know, and I think being able to tell stories to that don't get talked about at all, are valuable as well. Like, I mean, some of my favorite ones are, you know, people coming along, like I always think of like, remember the girl who told the story in the after dark series about being diagnosed with diabetes on a heroin bender? Yeah, like, that's insane. Who would tell that story any like, beyond type one's not writing that down somewhere? You know what I mean? Like, or somebody like that, not the I'm not to call them out. But like, you know, like, you don't I'm saying Lilly diabetes isn't going to do a blog post about that.

Stephen 1:37:54
Or when I described the site, I use that as one of the ones. It runs the gamut from

Scott Benner 1:37:59
Yes. Being diagnosed during a hurricane heroin Bender, remember, she broke out of her grandfather's house, like, I mean, taking the sadness of the heroin out of it. What a fantastic story. He you know, and, and people were bipolar, or, you know, I'll never forget when I got an email from a woman who said, I want to come on the show and tell you about my sexual assault because of how it impacted my type on diabetes.

Stephen 1:38:24
That was really interesting podcast. Yeah, the perspective of it was

Scott Benner 1:38:30
when she emailed me, I thought, I don't know what to do with this, like, like, and then I thought, if it's if it's that important to her, then why would I say no to that, you know, like, let her come talk. And I told her before we started, like, I'm incredibly uncomfortable about this. I'm like, I have no training or background in this. I'm like, I don't want to say something stupid, or be flippant, or you know, and she's like, No, you'll be fine. We got done. And I was like, is that okay? And she's like, it's great. Just like that, put it out. And I was like, okay, and then let's factor, you know, because, because who, who's going to tell that story? And then you realize she's willing to tell it? Because the podcast helped her so much. That she thought, well, this is my slice of reality. Let me add it to the stew. Hopefully, it'll make it better and more complete. And, and that's how that's how the episodes ended up being so good. It's, you would be shocked at how little effort I put into getting people on the show that you hear. Oh, wow. Yeah. Very, very weird. You would be you would be shocked. It took you a year to get on here. Yeah, but I mean, like, like, like when you listen to these conversations like wow, this is a good conversation. Like you might think I was out there mining a way to find this person, they find me

Stephen 1:39:44
and well the one for me, the one that hits home and the one that's so close to me, and I apologize because I can't remember her name, but it was the one about suicide and, and and he I don't know whether you I think he was on the Facebook have patient that's how you guys got connected. But sure, but the story about mentally what he went through and struggled through in that age, you know, that teen or the post teen time period. And it was I mean, it hit home I if I listened to it again, I'll still cry, you know, and I listened to and I cried the first time and I, if I listened to listen to it again, I've probably will cry too. Yeah, but because there are short stories that just really hit gut home. I mean, they really hit you. And I compliment you on that. But it's just

Scott Benner 1:40:32
it was it's Donnie, you're thinking of Donnie. Yeah. Right. He was abused by his neighbors. And is that right?

Stephen 1:40:41
You know, it was, it was another one, which he gave up. And he he had complications, but he got it back together. And one of the things he was he had done was just given up. And, and kind of like we said before, he kind of wrote it off. And and there was some suicide things that went on during the early times. And I kind of politics because I can't remember, I listen,

Scott Benner 1:41:05
I'm in the same scenario. You know, you see Isabel helping me on the Facebook page now. And in the beginning, when she started helping me she'd asked me a question. She's like, you really don't remember this. I was like, I, I'm sorry, like, of the craziest things that have ever happened. To show you how much information is flowing through my head. I put up an episode with an after dark episode with a woman who was sexually abused by her own parents. And somehow the file did the the the raw file stayed where it didn't belong. And it popped back up again. Six months later, I edited the whole thing and put it back up and forgot I had heard it. And and as I was listening to it, editing it a second time, I thought, my God, I remember recording this. This is fascinating. And then I put it up and I was up for five minutes. And Isabelle sends me a note. And she was you know, I think this is Episode Five, whatever. She's like, this has been out already. And then she calls me she goes, You really don't remember this, do you? And I was like, I can't like I was like I talked to four or five people a week I edit four or five a week. i It's all a blur to me, you know? But Donnie sticks with me even though Donnie isn't who you were talking about? Because we met online. And we talked on the phone, and he actually just we just messaged with each other recently.

Stephen 1:42:22
It could be done. It could be. Yeah, it could be

Scott Benner 1:42:26
He, he had made a plan to go out to Vegas to kill himself. And then we talked on the phone and I explained to him how to Bolus and he had a good night. And he was like, Ha, maybe I can do this. And now it's years and years later, at least. He's doing terrific. You know?

Stephen 1:42:42
Yeah. So anyway, it's amazing how little it can take some time to get somebody.

Scott Benner 1:42:49
Yeah, back. Yeah. Okay. All right, Steven, we could do this forever. So I'm going to say thank you and, and invite you to come back sometime. So it

Stephen 1:42:58
was a pleasure. And thank you, and thanks again for doing what you're doing in it. Could I ask you a few questions offline? Yeah, absolutely. Sure. Hold on one sec. Thank you very much.

Scott Benner 1:43:08
My pleasure. Thanks so much for Steven for coming on the show and sharing what I imagine is just a small fraction of his thoughts about type one diabetes. I also want to say a huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. You spell that g VOKEGLUC. Ag o n.com. Forward slash choose box. And of course you can get that Omni pod five and on the pod dash at Omni pod.com forward slash juice box go see if you're eligible for a free 30 day supply of the dash or get started with a five right now.

If you're enjoying the show, please leave a five star rating and wonderful review that explains why you love the show to somebody else. Wherever you listen like Apple podcasts or Spotify places like that ratings and reviews. Thank you. Of course, the Facebook page private 33,000 members Stephens one of them Juicebox Podcast type one diabetes on Facebook, check it out.

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#827 This Is The Game

Patty's adopted child has type 1 diabetes.

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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 friends, and welcome to episode 827 of the Juicebox Podcast.

Today, we're going to be speaking with Patty. She's the mother of some children, one of them is adopted, that adopted child happens to get type one diabetes. We start talking about that, and then something comes up, and Patty caught me on a strange day. So the conversation took a pretty wild left turn. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you have type one diabetes, or the caregiver of someone with type one and live in the United States, you can take a survey that will take you less than 10 minutes. And this survey is going to help people living with diabetes. You can find it at t one D exchange.org. Forward slash juicebox is a great organization. I've done a couple of episodes with them if you want to know what they do, you know, head back and find their episode. But this this survey is easy. It's HIPAA compliant. It's anonymous, and it's really going to help T one D exchange.org. Forward slash juicebox. This episode of The Juicebox Podcast is brought to you by Dexcom, makers of the Dexcom G six and Dexcom G seven continuous glucose monitoring systems. Find out more and get started today@dexcom.com forward slash Juicebox. Podcast is also sponsored today by U S med. US med is the place where we get our diabetes supplies. And so can you us med.com forward slash juice box or call 888-721-1514 Call or go online and get started today.

Patty 2:17
My name is Patty and I am a mom of two kids. I have an eight year old and a three year old and my eight year old is my type one. She is eight years old going to be nine and she is my adopted child.

Scott Benner 2:30
Okay, so Patti, I've made it an error here. I have not brought my whiteboard on to the desk. Hold on. You're gonna hear some noise, I apologize. This is how my brain keeps up with what's happening because I'm getting older. Let me just, oh, I'm gonna erase a Frezza. So yes, there's an episode on the Frezza coming up. And all this other stuff here. And then we're gonna say Patti has two kids ones 81618133. This is why we write things down three. Which one's the adopted one with type one?

Patty 3:09
The eight year old?

Scott Benner 3:13
Did she have type one when you adopted her?

Patty 3:17
So no. We adopted her at birth. And I knew some medical history. I did. It is an open adoption. So I do have some sort of relationship with biological mom and biological family. But no, I wasn't made aware of any type one history or anything like that. When we adopted her, like I said at birth on the very first day, I was the first person to hold her. And 16 months 16 months later is when she was diagnosed with type one.

Scott Benner 3:50
Wow. That's crazy. How old were you at that time.

Patty 3:54
I'm 38. So we are what we consider a really old parents. We we struggled about 10 years trying to get pregnant. We did three cycles of IVF. We did all of the natural medicines, the Western, the Eastern, everything we could think of and nothing obviously turned out we had a couple of miscarriages. And then in our third going into our third IVF cycle was when we looked at each other and said, you know we want to have a family and it doesn't really matter how that happens. So we're ready. If this cycle doesn't take then we will look into adoption. So around that time Yeah, I we connected with an adoption lawyer and he walked us through the process and it was just a fast the fastest thing I mean faster than any fertility treatment we find with January and in March. I matched with a birth mom. And then and then my daughter was born in June so it was really super super fast, it was like six months of being what they call paper pregnant, which I really don't like the term. But anyway,

Scott Benner 5:08
how long did you try the rest of the stuff? How many rounds of IVF? Did you do?

Patty 5:12
It was three, we started when I was about 28. So it was a good 10 years of just not a, you're not getting any answers, just kind of going through the motions of all of the fertility treatments. And at the end of it, we were just told, you know, your embryos suck, you know, they're not really good. They're, you know, this one died off, you know, blah, blah, blah. And there wasn't anything that they could tell me that was going, that was off with my husband, there wasn't anything really wrong with me, it was just kind of luck of the draw. And, you know, we had a couple of good embryos that took but none of them that, you know, advanced far enough that they made a baby. So we were really frustrated, and then spent a lot of money going through this process. And we just said, you know, we missed it. We can't do this anymore. We want to have a family. We're getting older. And, and that's when we looked through looked at adoption, how old we really were.

Scott Benner 6:10
Oh, go ahead. No, I just want to know how old you are when you got married.

Patty 6:14
So I, we got married when I was 21. So I've known my husband, since we were 1314 years old. We have known each other for like, it seems like an eternity, honestly. And we're we're going to be celebrating our 25th wedding anniversary this year. And it's just it's been it's crazy. So we got married super young. And, and we traveled a lot before we wanted to have kids. And sometimes we think we waited too long, because we were just older when we started trying but whatever the case was, we just you know, that's where a young couple

Scott Benner 6:48
you certainly were. Wow, you probably all that time are so proud of yourself for not getting pregnant while you were young and having sex and now you realize that wasn't even going to happen. Fortunately, condoms wasted batty.

Patty 7:09
In my mind, I was just going to be able to stop birth control and say, Oh, it's time and it was just magically going to happen. That's really what was in my head. Like, all I had to do is just think it and it was gonna happen and I was so not even close to what was gonna happen. So

Scott Benner 7:25
can I ask you Can we talk about it for another second? Can I? I'd be interested to know. I mean, what does it feel like the the time being you realize like, I can't, like, I'm not going to have a baby like this like is it? What does it do to you kind of psychologically.

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Patty 12:19
It's really heavy. And you know, it's interesting because you know reaching out to you finally listening to your podcasts and all of those things, even though not directly related to adoption, but you know, just my daughter. It's been a lot and, and just recently, I think I've started to be able to talk about a little bit more because I'm sort of, in a way a private person, I don't really talk about my own personal life, I don't want to bring anybody down. I don't want to sit and cry and say, you know, fertility with infertility was really, really hard, you know, we couldn't get pregnant. But psychologically, it was it was really a lot. And I'm sure it caused a lot of issues in my marriage that came out in different ways. And really what we weren't talking about is just the frustration that we had of not getting pregnant, and everybody else around us getting pregnant. I mean, you know, every time we had a friend that announced that they were pregnant, I was super happy for them. But there was a part of you that is always sad is always sad that it's not you and that you're not getting celebrated. And when is it going to be my time and? Super, super hard? So yeah, yeah, I think

Scott Benner 13:28
I believe I understand. I mean, did it. Do you think that in hindsight, did it make your relationship stronger? Or did it mean it? I'm assuming it tested you a couple different ways? So or, or can you not look back on it and see it as anything positive?

Patty 13:43
Oh, I think it is. I think all of it is, for me, not to be cliche, but all of it was for a reason. I do think it makes us It made us stronger. Not just this but then diabetes and adoption and then now getting pregnant naturally with my son because it was a total shock and surprise, six years after Isabella was born. All of it, you know, was I guess those are just the layers of foundation that we needed to build a stronger marriage and that we look at each other and we're like, we're stuck with each other. We're not going anywhere. We have two kids, one with diabetes, you're not going anywhere. I'm not going anywhere. So

Scott Benner 14:22
got what you wished for Patti? Congratulations.

Patty 14:28
All my dreams are coming.

Scott Benner 14:32
That is a perfectly spoken statement with the right inflection and tone from a person who's been married for 25 years. So I got what I asked for. Here we go. No one's leaving. If anyone's getting out of this it's gonna be me.

Patty 14:49
exactly know where we're stuck. We look at each other all the time. Every time we like had some sort of argument or chip. We're like, sorry, you know, we're gonna have to get over it and move on because there's no there's no going back. So we have

Scott Benner 14:59
time. On the similarities to where you married in 96. I got married in 9797. So I'm married in 96. I've been married for 25 years. My wife was 21 when we got married. Really? Yes, I'm adopted.

Patty 15:15
I knew that right.

Scott Benner 15:16
I mean, I think we're gonna find out soon that you live across the street from me if we keep talking long enough. So what? So

Patty 15:23
I have an idea of where you are. And I don't think we're anywhere close. I'm in Los Angeles, Southern California.

Scott Benner 15:29
I'm not there. Like the people have an idea of where I am just, I mean, you know what I like, whatever. That lady sent me those big pop ones. They were amazing. Actually, if you're listening, send more cakepops that I love. But it I mean, so I was, I wasn't adopted on day one. But I mean, it was very close. I think I was only alive a couple of weeks before my parents had me. There was the 70s. Like they, you know, I was probably living in a box outside of a firehouse or something like that, like who would know? And but it wasn't, it wasn't when my parents were like, in the system, looking for a baby. You know, I guess it was different the way it happened back then. So it's really crazy. Oh, did you? Oh, how Isabelle. Right? Is your is your daughter's name? Isabella Isabella. Isabella, did you tell her she was adopted? How early? Or does she not know?

Patty 16:27
Now she knows. She we've been trying at different stages of her life to just share the story as appropriate, as much as she can understand. So yes, she knows we have an agreement that are that we made through our adoption that we were going to keep, like I said, an open adoption. And we were going to try to establish a relationship with biological mom, they are not really near us. But we had said, pre COVID that we are going to try and visit each other every other year. That hasn't happened in a few years, because of COVID. The last time that she really saw that we saw each other was when she was one right before she was diagnosed. So she does know. And she's coming to the age right now where she's asking a lot of questions, a lot of the hard questions about you know, why, why this happened? You know, just the whole story. So we have to keep reminding her and telling her the story again, over and over. Um, it was very different when she was a baby, you know, it was very sweet. And oh, we chose you. And of course, that's the truth. But now she wants once real answers. And she's also asking about no extended family, like hurt their side of the family. She does have half siblings. So it's hard. It's a difficult thing. But I know. I mean, at least all the books tell me and everyone tells me that it's just better for her that she doesn't know as much information as I can give her as she gets older. So

Scott Benner 17:56
it's interesting the level of curiosity and how it vacillates because I never cared about any of that. It nearly never growing I'd never I've always known I'm adopted. I've never once thought about like who those other people may or may not be. I've never thought of my mom and dad is not my mom and dad. Even my parents got divorced. And I still I wasn't like, well, at least he wasn't my real dad. Like, I didn't have any of those feelings. You know, when we were first married. Kelly, my wife wanted to like medical information, she kind of she she gently suggested and insisted that we find out about my, my, my birth mother. And we were able to locate, but she was passed already. And and I got to speak though, I got to speak to one of her sisters for a few hours. And when I got off the phone, my wife's like, well, and I'm like, Well, hey, I'm never talking to those people again. And it was just not. It was not an uplifting experience for me. And, and and you know, so I learned a little bit, but the one thing like I don't think I'll ever forget is that that her sister said she regretted giving you up every day of her life. And I thought, oh, that's sad. And then, you know, like, and then but I didn't have that feeling of like, Oh, my mom is sad. I just thought like, I don't see her that way. So even just think yeah, I mean, I'm not unaware. I just like my parents. You know, they were there for me. They took care of me and they're my parents. Like I don't I don't really care. And can I tell you to I loved being adopted? Really? I I love this. I might have a streak in me about something but I loved not being attached to anybody's history. I loved I loved feeling like I was the like the beginning of it, and that I could decide if I was religious. Or if I was like everything like I got to figure it out and be who I wanted to be bomb myself without a bunch of people telling me, we do this on Sunday, or we do this at Christmas, or this is how it goes like I just I love that. I don't know. Gotcha.

Patty 20:09
i It's interesting that you that you kind of thought that you are? Well, you did that you had that freedom just because you weren't biologically attached to. Yeah, because I

Scott Benner 20:19
wasn't attached to those people either as like, I don't have to their bull crap either. Because like, they basically rented me long term. And so what I ended up doing through my life is I would identify people that I appreciated. And if they had certain aspects of their personality that I thought were really laudable, I kind of used that as my teaching. And I don't know if I've said this before, but I worked with this old man one time, and he was just such a hard worker. And that's all I really remember about him. He worked really hard. I worked with a guy who had a great sense of humor, and even when his life was painful, he was pleasant to be around. And, you know, and on and on. And as I met people like that, I would, I would identify and say, well, that's a, that's a trait that I would like to have, like, I think that's really and I sort of got the build myself out of spare parts. I feel like so

Patty 21:13
interesting. Yeah. I mean, I hope that Isabella, I mean, I would hope that she would grow up to I don't know, I actually really don't know I, but I hope for her, but I do every day have to work at just making sure that she knows she is loved, and even loved more. So just because I feel like you know, there is a whole family out there that chose this for her because they knew they could not take care of her. They knew at that moment that their situation was so dire that they needed, you know her to have the life that you know, that she should have. And I just hope that she realizes that one day. And I think going into the teenage years. I mean, we're like pre preteen right now that she can appreciate that one day, and I don't want to tell her that I just want her to come to that conclusion on our own.

Scott Benner 22:06
Everybody has to feel like some part of the gap like my I have my father's mother was the person I was closest with growing up. And she always had, like, she was just telling me to my face. She'd be like, Look, you're adopted, that's hard, you know, and so and so she could I always she tried harder with me, she was closer with me than she was with my with my other cousins who she was all related to by blood. Like she was she was very careful to, to support me even like in the 70s and 80s. When you wouldn't think like, you know, people, children were still feral back then you don't I mean, nobody cares. They're like, Listen, if it doesn't die, we did it. Like perfect. Yeah. So my grandmother was like that. And I was comforted by that I felt always the closest to her. And then from there, I just, I don't know, like, the one thing I would tell you. I'm gonna make you sad. I don't want to make you sad. But when, when things would happen in the house, where I grew up, my parents and later my brothers who much like you another thing we have in common, I guess my mom just suddenly could make babies after they adopted somebody. So that something would happen, it wouldn't matter what it was. And they would all have a similar reaction to it, or a thought about it, or, you know, a plan to move forward. And mine were always different. And so I was I just knew I was different than they were, huh. So I never felt the pressure to be like, Oh, they think this I have to think this to Interesting, interesting anyway, that's not why you're here.

Patty 23:49
No, I mean, I am a you know, I honestly, all of this is, I don't know it's coming of age. I'm having like this, this midlife crisis, maybe I have no idea but where all of a sudden I am wanting to talk about it. Like I said, I reached out to you. You know, it sounds so corny, but I keep thinking of this song, one of my favorite bands. And one of his lyrics is like, I have a scar I can certainly talk about and these are all like things I can finally talk about. I haven't talked about them to anyone really here to, to my best friends obviously. And and, you know, I talk about it sometimes to Scott, but he like loses patients really quickly. Like moving on. But you know, I just think that I am here for those reasons and obviously type one reasons but it feels good. It feels good to finally get it all out.

Scott Benner 24:39
I'm glad for you. And there's nobody better to tell than me. So because I mean who would you not tell but it's strange to listen to your ears. person you wouldn't know if you walked into them in a grocery store. You'd be like, Excuse me, keep on walking. So, what do you think made you want to start talking about it more

Patty 25:02
I think being in this pandemic and being so, you know, I guess all together all the time, and really watching Isabella's numbers all day long, and adjusting and doing all of the things that were frustrating me and like, I'm like, you know, I should just be a full time nurse, you know, how is the nurse when she goes back to school is going to be able to do all of this, I need to do better, because I'm not doing as good of a job as I want to be. And to be honest, I listened to your podcast, I think when Isabella was diagnosed back in 2014, I think it was just getting started. If I'm not mistaken, or no, or maybe you were some years into it. No, I

Scott Benner 25:43
started the I started in January of 2015. So you did okay, you might have even been on the blog earlier, it's possible,

Patty 25:51
I might have, I remember hearing about your blog. And I think I heard a couple episodes early on. But at that time, I was just so in this terrified state of, of everything you know, of what people talk about on your podcast all the time, just, you know, of her going too low of her, you know, dying in her sleep, I would ask her endocrinologist and say, Is she going to die in our sleep, am I going to wake up, and she's not going to be there, because that is what I'm terrified of. And it took me so long to not be so scared. And then being in the pandemic, and seeing all of this going on. So you know, just every single minute, I said, I have to do better. And that's when I started listening again to you. Because it took me a long time to get back to the podcast and really be able to take in the information and not be so scared.

Scott Benner 26:38
It was the span of time between you finding it and then actually being able to listen to it.

Patty 26:45
Finding at first when she was diagnosed, because I think I heard early on probably if you started in 2015, she got diagnosed in 2014. And I remember hearing about it first through her friend and to our endocrinologist office. So that was just maybe a year and a half into diagnosis. And then pandemic that was just a few years ago. So she's already with five. So she you know, we've been living with it from for five years. And that's when finally I think it started clicking for me and being able to adjust and you know, and mess with my settings and all of that really just motivated me to do a better job and start really focusing on what you were talking about what your guests were talking about. And starting to just take more of I mean just being less afraid. I was always afraid and I don't really understand

Scott Benner 27:41
Patti, you're going Hello Patti if you can hear me I cannot hear you well obviously the ads going here comes the music. But I'll put the actual music in here. We're gonna have to find Patty searching for Patty will be very back. She was trying to understand she's still on she's just not here petty petty petty, petty, petty, petty, petty petty. What the dealio I'm gonna have this COP this. And she's got you know what? I bet you're her headphone died. Patty. Patty cake, patty cake. Does everyone know that one? Right. But does patty cake patty cake, baker's man Bake me a cake as fast as you can. See, roll it. Pat it No kidding. That might be where the patty cake comes from. And mark it with the like, use your letter. I'll use my s. And then you put it in the oven for Paddy and me. Is that is that the thing you do with babies? I think I remember that. All right. Patty has been hit by a meteor. We'll be right back.

Patty 29:06
Oh my gosh.

Scott Benner 29:08
How do you when I was growing up? I lived thinking that California was going to fall into the ocean. And I thought could it have happened while I was recording with Patti. But no, you're here. You're so not sure what happened. But Hi. Hi. You said I'm so sorry. Be sorry. It was a perfect place to put the ads.

Patty 29:28
I figured I figured that you were gonna say Oh,

Scott Benner 29:32
then I went over patty cake. And I tried to remember that. And then then you're who you are again. So you were having a hard time. Understand and then you're gone.

Patty 29:44
Understanding just why I was so afraid for so long. And why I avoided listening to the podcast or any sort of advice that was not my doctors. I still don't quite understand why. But now I feel better. You know, I feel You know, her agencies is lowering. I'm just getting a better sense of everything. And now I'm like a daily listener all the time. And so it's just, it's, it's an odd thing that happened, I think just by being here, altogether, and just realizing that I wasn't doing a good enough job.

Scott Benner 30:19
So I love this story, because it gives me a ton of try to imagine that I started a thing in 2015, you found it. And it wasn't until 2020 That you're like, alright, I'll listen to it. And like, and I was still there, like, when you came back, you're like, the guy still there with the thing? That makes me happy. Because there, I mean, listen, I have no intention of stopping my podcast. But there are times where, you know, my life is very like, it's like content and numbers driven, right? Like, I need to see more downloads this week than I saw last week, I need to see more this month than I saw last month, like I have to keep it growing for business reasons where I can't keep it going, right. And then you have to keep the content fresh, and the conversations fresh, and the information needs to be strong and timely. And, and there are times where I'm like, like, the year will end and I'm like, I'm just gonna do it again. I guess like, like, you don't I mean, like, you're like, alright, I'll do it again. And it's daunting sometimes. But to think that, that it was there for you when you came back? I mean, honestly, you're talking and I thought like, this is all worth it just for Patty, like, yes.

Patty 31:32
Yeah, you've made my day. Thank you.

Scott Benner 31:34
Seriously, because you said earlier, like, Why did I just Why did I let myself be afraid for so long? There's, there's a ton of good reasons to be afraid. And it's not. I don't think it's that you stop being afraid. I think that it's you stop feeling the fear. Like you don't even like you know, it's still there. You know what I'm saying? Like, it's like swimming, diabetes is sort of like swimming with sharks. Like, you know, like, I don't swim with sharks, I wouldn't get in the water, because I think I'm gonna get the water the sharks and eat me. But people do it constantly. They're aware of it, and they know how to manage it. And it's, and it works out and one of them lose an arm once in a while. But for the most part, it turns out, you can swim with sharks. And so, you know, diabetes is like, it's crazy, because I have a personal story that I want to tell you right now. But it's not ready to be in the public. And I'd literally have to trust you to never say anything to anybody for like six months. If you think you can do that. I'll keep talking. I can do it. All right, Patti. I'm not kidding. Okay. You and me until this episode comes out.

Patty 32:45
I promise. Okay. Okay. This past

Scott Benner 32:49
weekend. I can't believe I'm telling you this. I'm getting nervous. It will. So by the time people hear this, it will have been in the podcast somewhere else prior. Okay. But this past weekend, my daughter had her senior prom from high school on Saturday and my son had his college graduation on Sunday morning. It was literally one of the worst things that I thought had happened to me so far as a parent that my daughter couldn't come to my son's graduation. And we couldn't be home for her when she got home from her prom. Which was this all day event up early hair, makeup dresses, pictures, running around, go to the prom, do a red carpet, get on a bus go to the event, eat dance leave the event, they take the kids to some like locked down sport zone laser tag place. Overnight, they keep them there till four in the morning. To me this sounds like they are trying to keep them off of drugs, alcohol and sex. They were trying to exhaust them. My daughter gets home at five o'clock gets in the car comes home with her friends who are going to sleep at my house because we're not there. And we had been planning the whole time that somebody should be with her, you know, after a big day like that. And probably my wife and I stayed to do the red carpet. And we probably left our state around seven at night and drove three hours to where my son is. We got we went and found him saw him for an hour went to a hotel where all jacked up, couldn't fall asleep finally fell asleep at like two o'clock. At two o'clock. I took a screenshot of Arden's blood sugar because the 24 hours prior were so good. I actually thought to myself, This is amazing. Well, I go to sleep at two at three o'clock they decided to have french toast sticks. She Bolus for them pretty well. I mean, I didn't I didn't see her like in hindsight, do anything I wouldn't have done. Four o'clock, five o'clock, she actually spiked a little bit texted with us and we said hey, maybe you should have Bolus here and she looked at it and said now you know what this looks like. It's coming down. I'm not going to Bolus and about an hour and a half later we got a low alarm. And we woke up called Arden she drank a juice, or her blood sugar was not dangerously low as far as we could tell. We did everything we thought we were going, we would have done like if I was there, I did everything. The only thing that I wasn't aware of was the meal at 3am. Okay. A half an hour later, I wake up seven o'clock, my son sends us text. Hey, I got we got your great seats. I got shade blah, blah, blah. Super excited. I get up I go to the bathroom. I standing in the bathroom in the Holiday Inn Express Patti, naked. No one picture that, okay. I'm looking looking for my toothbrush and you know, trying to figure out everything I'm about to do. And I think to myself, let me look at Arden's blood sugar one more time before I get in the shower. And artists Dexcom indicated that she was low l o w. I looked at the graph, and the graph had been steadily low, since she drank the juice. And I thought that's not good. And I picked the phone up and I called her and she answered the same way she's ever answered me waking up from asleep. She's like, hello, like very like that. And I'm like, Hey, Arden, you're pretty low, still, let's do another juice. And then she pauses and goes, I can't. And I'm like, No, it's right. Next year, we set it all up where you're sleeping. And she goes, and she goes, I can't. And in that moment I thought Arden's about to have a seizure. Oh my god given me the chills and I was like, Arden you're gonna have a seizure. Get up find juice right now y'all for the girls. And she's like, she goes, I'm jumping. And her vision was going in and out.

Patty 36:47
Oh my god. So

Scott Benner 36:50
I don't know if she said skipping or jumping. I'm not sure I think jumping maybe. And and then I was that was it. I was like, okay, she's those girls aren't awake. Arden can't help herself. And I started yelling into the phone, art and you're having a seizure, drink a juice art and you're having a seizure drink a juice call for the girls yell Nadia's name y'all lives named say Sondra and she's like, I can't I can't, I can't and then she was gone. And then, just as that happened, I heard her friend naughtiest voice she's like, I'm here. What do I do? And I said, um, like, go get the glucagon. So she went to get the the G voc hypo pen she got that brought it back and I said, Nadia, let's try one time with juice before we give her the glucagon. I was like, Can she drink a juice? And the other I heard another voice say I have a juice and like they. They said she's drinking it. And I was like, okay, good. Good. Good, right. So I don't know what's happening. I can't see anything. And so I'm just like she's drinking it. Yeah. And then she starts to come back a little bit. And I said, As soon as she can just hammer that juice down, like Have her drink at all. So I find out later subsequently, hours and hours later, she couldn't drink the juice. They were squirting it in her mouth like a little fire. Yeah, she was had I known that I would have gone right to the glucagon. But she was she was so she absorbed enough of it through her cheeks that it brought her back. I don't think that this part of the incident lasted more than two minutes. But I do believe she may have been lower than the CGM said probably for a couple hours. And so they get her they get her around, she hammers down some juice. She I said, you know, we need to put something in her stomach. It's gonna stay there. Like just go get her a piece of bread. She's not going to want to eat. She you know, she ate the bread. She had a couple of gummy bears that we have around the house that hit her really hard. And we finally got her up into the 60s, I taught the girls how to test her blood sugar over the phone. And then they kept testing and verifying. And then I stopped. And I was like, I have to go to my son's graduation. Like I'm still naked in the Holiday Inn Express. My wife was sleeping still like I drew the short straw on taking the first shower in the morning. And so I walked out into the hotel and Kelly goes, What are you yelling at? And I said, Arjun just had a seizure. I stopped it. And she snapped her hops up. She's like, What am I She's okay. And I was like, but I gotta get in the shower. We're going to be late. So I showered real quickly called the girls back kept talking to them. They were amazing. These girls were just stunning and how they handled everything. Arden was joking again a couple minutes later, she immediately sent her one of her teachers an email and said, Hey, I just had a seizure. Can I get out of my homework on Monday because I don't want to be able to do it today. She later realized she just told me like 12 hours later, at the moment, she thought she was being responsible. And then they couldn't sleep. Right? They were they stayed so now they're up for 36 hours. We don't get home for like 12 hours after this happened. And you know they're they're good Arden Still, she's shocked still but she's she's okay. She's bolusing for her food she put on the pod five on the Hill for the first time the night after that happened like she's not daunted. She's still a little shocked, but she's not. She's not daunted. We had a long conversation about it. I talked to her the entire ride home for like two hours. And she said something. I was so thoughtful about diabetes. She said, um, oh, and I don't use these words around her, which is really interesting. Very often. She goes, I know I do the right thing. She's like, I'm not worried about what I just because there were just so many new variables that day. I think that's what got me. And then I was like, yeah, so I told her I thought we were she probably had a ton of adrenaline. And we were doing great all day. Like, I swear to God, her blood sugar was just terrific all day. And the adrenaline was proud. So we probably too much activity and heat. And then, but the adrenaline was making the insulin look like it was working well, I guess. And then I think she either should have not Bolus for the french toast sticks. Or we could have 10 things down. But even looking back, she was on loop at that point. And the loop had taken her basil away for hours before this happened. Like it was trying. It was trying. And I put I put a juice and on top of that. Now why do I tell you this here in this episode, Patty, when I had zero expectation about talking about? This is why

Patty 41:31
you're ready. Do you want me to tell you?

Scott Benner 41:33
You tell me why you think I told you and then I'll tell you if you if you're right.

Patty 41:38
Because we're never not afraid. But

Scott Benner 41:40
how am I today? You're fine. I'm fine. I am not scared. Not scared. I am not scared. Arden is going to college the way she was supposed to. Nothing has changed. Arden has type one diabetes, she uses manmade insulin. And this part of the game. Yeah, it just is. And if you can't see that, you're gonna be scared your whole life. So well.

Patty 42:09
My takeaway is that she's not Isabelle is not going to prom and just letting you know prom. No problem for you.

Scott Benner 42:18
Honestly, it would have been better if hard just had sex and drugs after the prom.

Patty 42:25
But french toast sticks.

Scott Benner 42:27
Evil Yeah. I was about to say something completely inappropriate. But yeah. But yeah, the french toast sticks ended up being the problem. It's just, you know, look, I'm not gonna tell you. I wasn't scared. But I did in that moment. Exactly what I would tell you guys to do. I thought about it like an astronaut. Like, there's a line of things in front of me trying to kill me. I'm going to stop the one that's as close as it is. And then I'm going to move to the next one. And I'm going to speak slowly and calmly. Because if I panic right now, something bad's gonna happen to her. And if that girl wouldn't have got up and said, I'm here, what do I do? I was already moving towards my wife's phone to call 911. I was already calling a neighbor. I knew what I was going to do if it went one way. And I knew what I was going to do if it went another way. And I know that because I make this podcast and I have the conversations that you told me listening to are so valuable. I knew what to do when it happened. I'm going to tell you that when Arden was in getting ready to start kindergarten, I know I've told this story before but I went to the school to start prepping them before she even got there. And they laughed at me in the office and said, She's not even a student yet. I said, well, it doesn't matter. It's not that easy. You need to understand it before she gets here. And I told them the same thing year after year, that being ready doesn't mean being ready doesn't mean that you're going to stop a problem. Being ready means that you're going to know what to do when a problem arises. Because a problem is going to arise. And it is going to come when you don't expect it. We had been practicing for this for months. Arden stayed for days by herself in our house recently took care of herself beautifully. Not a problem. I don't looking back, she didn't do anything wrong. At that prom. It's just there was so much activity that it just it looked like it was holding up and then probably just like we talked about, she went to sleep and her body relaxed and all that excitement went away. And there was nothing there to hold up that that that insulin that was in there. So I'm going to tell you I'm not lying. I am not afraid today. But I am not afraid because I decided not to be afraid. Not because there's nothing scary. Of course.

Patty 44:49
I think that I'm coming too slowly to that realization or understanding of, of not being as afraid as I used to be just that it would You know, in the frozen state, because I don't want fear to freeze me and like, I've had situations where I've had, you know, she's been under the care of others. And other people have made mistakes, like, you know, given her nine units of insulin versus nine grams of carbs. And I've been in those situations and they have frozen me, I was frozen after she was diagnosed, like I couldn't function. I, it's, I spent about two to three weeks just lying on the floor, like literally lying on the floor next to him just crying. And I don't want to be there anymore. And I think I'm not there anymore. I think, obviously. And so I, that's why listening to your podcast, and just talking about all these things. And talking about it too, with other people and other friends, has made me better and has made me more confident. We're trying to get we're on the Omnipod dash ourselves. And we're, I've been fighting and arguing and we're getting upset with people trying to figure out why we're not on the Omnipod five yet. But I know I'm it's it's pretty new. So we're just waiting. But yeah, it's definitely helped. And hearing that story, it makes me makes me sad, in a way it makes me it gives me chills in the sense that I don't, you know, I don't obviously want that to happen, but knowing that you can't absolutely plan for every single thing in life, and things are gonna happen. And you just have to be proactive. And

Scott Benner 46:26
how do you heard me cry on this podcast plenty of times. What I just described you happened 48 hours ago, I'm not crying. Like being alive is not for the faint of heart. You know, and, and having diabetes and using manmade insulin. It's, it is what it is. I mean, you all have to imagine I've made I mean, 700 episodes of this podcast, you don't think in my personal life, I don't think God someday something's going to happen to Arden. And I'm the guy with the podcast. And it happens that my kid, like, you know what I mean? Like, I can't stop it any more than, than any of you can. And it's going to happen. Like if you really step back and look at the confluence of things that had to happen, because if Arden would have just come home, and I was here, we would have talked, I would have tested her blood sugar, we would have looked at a couple of things, we would have made some adjustments. If she started getting low, I would have been there. And that wouldn't have happened. Right? But it just, I mean, really think about it. I had two children five years apart, and their college graduation and high school prom fell within the same 12 hours in two different states. How does that happen? The like, it's just, but she had friends here that was planned. She was sleeping next to juice boxes that was planned. All of those girls know how to use the diaper pen that was planned. Right? Like, all of that was planned. When I was faced with that problem. Everything that I said came right from the like, right from the stem of my brain. I didn't have to think of any of it. I knew what to do. And I knew in that moment that panicking is the only thing I could do wrong. Because I know the steps. Just take the steps do the thing. It's going to be okay. And by the way, she was talking 30 seconds before this. We're going to get her back out of this again, like we are she already had I could I was standing there thinking she had a juice an hour ago, she drifted down really slow. She's probably just lower than we thought she was. There's a juice in there, we're going to put in another juice. This is going to be okay. Now let me tell you, it ruined the next. You know, the next two days of her life, she still got a headache, like a blow kind of background headache from it. She's a little nauseous still. It's just she was had a prolonged low. And this is i Jenny and I spoke about it Jenny's the only person who really knows. And you know, I've checked in Jenny's like, this is all incredibly normal like for afterwards and she's like it'll pass eventually. And Arden's okay. And she this is her reality. She shouldn't not know, just like your daughter should know she's adopted. You know what I mean? Like, you don't? Listen, I'm really good at diabetes. And I'm slowly passing off what I know, to Artem. But it's, she knows half of it. And I told her later I said, Listen, you gotta we have to sit down and I gotta give you the rest of it. I said, there are things that happen overnight, when I was sleeping, that if I was there, I would have known to do that you have no idea to even think about. And you know, it's and you're gonna learn it. But if I expect her to look like I'm 50 Batty, how much longer can I go? You know what I mean? So even if i You're a lovely, even if I make it to 70 I'm going to be useless. All right. And I mean, my mom's 79 Be honest with you in 10 years, you know, generally added much to the party. And so like, you know, even if that happens to me, right art is only going to be 38 When I'm 70. So if I, if I want Arden to be 70, then she's going to have to have these experiences so she knows how to handle them. Yeah, and this is an experience nobody wants to have. And I'm not saying everyone's ever gonna have it. But more of you that are listening than not are going to experience a scary low blood sugar at some point. And Medically speaking, if that's all that happened to heart, and I said to ordinary, you know, the medical community calls, what happened to you a low blood glucose event and she goes, it felt like a seizure. She's a little banged up, she kept she was running her elbow into a sofa, and it's so hard that it rubbed her elbow raw. She had sparkles like like diamonds in her nails. And she's like, scratched her forearms with her own, like the top. But other than that, she's okay. And I'll tell you what, last night, she's like, Can we sit down and look at my prom pictures? And I was like, Yeah, sure. She's like, Okay, so the only thing that can go wrong is, you know, dying. If you don't die, then everything else is manageable. Anyway, all right, Patti. Let's let's read dirt. You said Fear and you screwed up your own episode. So that's not not my fault. It's your fault.

Patty 51:21
Yeah, and you know what, I'm so afraid that it's gonna happen again. Because my this laptop is like it just like, what happened is it just all of a sudden, everything went away. And I don't know what what it's doing. It's like rebooting itself. I have no idea. Anyway,

Scott Benner 51:33
we're gonna be okay. So on top of all this fun for Isabella? She has she has ADHD.

Patty 51:40
Yes, she does. So she was diagnosed officially, when she was five right before the pandemic. And she was also diagnosed with odd, which is oppositional defiant disorder. So that's lovely. And, you know, I just heard one of your podcast episodes with a mom on there that she was saying how her daughter was very had a very spicy attitude sounds just like Isabella. But it was related to blood sugars. And I thought that that was the case, you know, because early on, we saw this attitude, even like, get one. And I thought, Oh, well, we're gonna get blood sugar's under control, everything's gonna be fine. It wasn't the spicy attitude and the defiant attitude, the very, the all the personality traits that you really, really hope are going to serve her later in life are still there. But yeah, she was diagnosed with ADHD. And so we went, we shut down obviously, for COVID. And so she was home all day long every day. And so we saw the whole range of her attitude and behavior. She's now on medication for ADHD. And she's gone back to school, she went back to school in December. And things at school are really great. I think the medication really helps her focus, and you know, and comply and she listens to her teacher. But once she's home, it's a whole different ballgame. It's like all of that release of, I don't know, emotions, and behavior is all saved for us. So we're really lucky.

Scott Benner 53:17
Did you ever Google this anti an attention deficit hyperactivity disorder has been associated with several autoimmune diseases?

Patty 53:25
I think I have. Yeah,

Scott Benner 53:28
I It's incredibly interesting. And it was the other odd,

Patty 53:32
odd is Oppositional Defiant Disorder, disorder, or Yeah.

Scott Benner 53:38
And she's doing better now with the medication.

Patty 53:41
She's doing better with her ADHD. So the ADHD just helps her focus and not be so distracted, because she has a really hard time. Like, she's the type of kid that you know, you see a gnat, flying around buzzing around and you will focus on the net, or, you know, the PISA dust or whatever the case may be. So I knew it was going to affect her school, because you need to be able to focus and, you know, pay attention. So that has really, really helped. But it doesn't help her with her behavior at home. It doesn't help us help us at all with like, her being more compliant are listening. And that is, I think that right now is the most challenging piece in parenthood right now with her age is just that I really want her to be a little bit more compliant in order for her to learn some things that she needs to know about diabetes, because she's very dependent on this. And I know that at her age, she should start being a little bit more independent, like I should be able to, like I think one of your earlier episodes was how you texted art in second grade. I think it was second grade, or third grade.

Scott Benner 54:44
Last year, second grade is the last time Arden was ever to the nurse because I figured out Yeah, yeah. So

Patty 54:49
Isabel is in second grade going into third in August and I just don't think she's ready. Like she I can't even imagine her being so focused enough for that. long enough to be able to text her or do something about her diabetes, or take a juice or, you know, or even dose herself. She's not at that point. And I really wish she was. But I know it has a lot to do with this. Outside stuff, the ADHD, the odd and I think it'll just take her a little bit longer.

Scott Benner 55:17
To ask a hard question. Do you find that it's difficult to be demanding of her because she's adopted?

Patty 55:26
No, I don't, I feel what the difference between the, in my mind about her being my adopted child is that I feel a tremendous sense of responsibility. Being a parent and doing right by her and just taking care of her like health, and being on top of all of this ADHD thing, not so much being like tough on her being, you know, discipline, because I think we're, we're pretty spot on with that. But it's just, I think it's always there's always something that I'm running up against that I feel like, I'm not doing a good enough job with just being an overall parent. And I have just this big guilt and feeling of just responsibility. And it weighs heavy on me. And you know, my other my son is only three, but he's has a very different personality. So I feel and I don't feel that sense of responsibility with him as much. I don't know why. But with her, I think that's what really affects me or parenting overall, but not not so much that I can't be hard on it. Because we are we really try to parent as much as possible.

Scott Benner 56:31
Let's so I you know, it's funny, I think back to something I said earlier about, you know, when when they're not yours, like from blood. Like you don't realize that there's things that like, you know, what I mean? Like there's things that you do that your son probably just jives with, because he's wired more similarly to you than not. And so you're almost talking to, it's almost like when I don't mean it like this, but it's almost like when you have something running very smooth in your house, then one of your kids friends comes in, and it's kind of a mess. And you're like, I wonder why that kid doesn't react to me the way my kids do. And it's because right there, they see things differently, you know, thank you. Yeah, but I think it's, I think you're doing it sounds like you're doing a terrific job. And I think you're doing what you can do, which is, you know, see, see the shortcomings address them. Just try to learn slowly. I mean, the odd is got to make everything more difficult, I would imagine.

Patty 57:27
Oh, it's yeah, there's some times in this house where things are going like kind of out of control crazy, just because it could be as simple as you know, just putting on like, a Dexcom, or, you know, putting on a new pod. And it's just like, if she flies off the handle, and I'm like, Oh my God, how long have we been doing this? Ella? We have been on Omni we've been on the pumps. And she was four. You know, and she's been on Dexcom since she was three it's it's like an every. This happens all the time. And you can't fight us on this all the time. But it's the same and it's it's it's really difficult. I think it does. It does create a real parent challenge. I had my husband and I are like we're parents. We're parenting on steroids. Not only is like do we have type one diabetes, we have all of this on top of it. And now we're bringing this whole like question about adoption into this pre teenage and then she's going to be a teenager. I mean, I don't know what's gonna happen.

Scott Benner 58:21
I know it's just gonna try as long as you can tell you can't you can walk right the Pacific Ocean if you

Patty 58:30
go back. Yeah, exactly.

Scott Benner 58:34
If I can swim to Hawaii and go on a vacation. If I can. I can. Oh, by the way, apparently, the sharks won't bother you. So you'll be fine.

Patty 58:40
We just wanted to show like an episode of I think it was Ozark. She checked herself in to a mental institution to get some sleep. And I was like, Wow, that sounds like an amazing thing to go do

Scott Benner 58:55
about where I'm at right now. It's about by the way, spoilers if you haven't watched those. It's

Patty 59:01
it's not really a spoiler. It's just part of them. I'm sorry. But you're not going to air this for a while. So hopefully by then everybody's watched it.

Scott Benner 59:08
Yeah. If you haven't seen Ozark by the time this comes out, then shame on you.

Patty 59:12
Exactly. Exactly.

Scott Benner 59:15
So now I'm sorry. So it also has hyperlipidemia

Patty 59:19
Oh, yeah. Yeah, she does. So I think it was about four or one of her routine endo checks where they do all the bloodwork. She came back with high cholesterol. So we kind of investigated and you know, when they had this run more tests, and they just attributed to genetics. They just said that some kids just have genetically higher lipids or whatever cholesterol counts. So she said she sees a cardiologist and we just had our cardiologists appointment about three weeks ago. You know, and her numbers are steady her triglycerides, which I think are the bad ones, but are highly variable. are lower. And they've, you know, they've lowered significantly, which is great news. But they also, like I said, are highly variable. So they could, it just depends on, you know, the time of day that she tested if she fasted eight hours versus 10 hours or whatnot. So the doctor doesn't want to put her on medication right now she's a little bit young for it. But in the future, we could be looking at something like that to just lower her overall cholesterol because they're concerned about heart problems, heart issues, especially with kids with type one, type one. And the cardiologist just mentioned that, obviously, the lower a wincy that we can get, the better. Odds are for cholesterol and just healthier. They're healthier overall, she can be. But it's something that we have to watch. And it's, she's such a thin girl, she's super petite. And you know, she doesn't eat poorly. But the things that she does love, like salt and butter are things that I'm like, Oh, I don't think that's really great for your cholesterol, but you're a kid, that's what you're supposed to eat. And then you know, I also want you to gain weight because you're a little bit on the skinnier side. And but it's just this whole cycle of things that I'm not supposed to do and try to watch. And

Scott Benner 1:01:10
it's hard to know when hard to know what to take. Seriously. I mean, salt. It's amazing, right? I mean, who doesn't want salt and butter? It just doesn't want letter. Exactly. Well, is there any? Is there any chance? So I mean, I'm looking it up here and it says it's chronic, it can last for years or be lifelong. I guess this one of these things they find because they're looking for it. Do you know what I mean by that?

Patty 1:01:35
I think it's just high cholesterol. Really, it's just a fancy name for high cholesterol, but I'm a child her age, you should not have high cholesterol. Gotcha. So it's something that appeared and, you know, was a red flag for endo and SAR endo just referred us to the cardiologist and, and now we have to see a cardiologist from every year. You know, he seemed like he was pleased with her recent results, but I just didn't worry, because I just think in the future, what if like, her diet isn't that great? Or, you know, like what happens when she's on another medication. And on top of everything, and I just obviously don't want her to be on so many things, but it is what it is. So we're just keeping an eye on it.

Scott Benner 1:02:18
I will share this with you as as the newly minted father of a college graduate.

Patty 1:02:24
It's graduation.

Scott Benner 1:02:26
Thank you, you congratulating me on not having to pay for his college anymore or graduate? So yeah, so it's, they're gonna become adults one day, and there's almost nothing you're gonna do after that. See, you're just you're you're, you're trying to point them to a path. And you're hoping they land on it, and keep going. Based on something you've said or done or help them with in the past? It's, it's, um, there's no way to know. And even you might not know, like, what she'll leave one day, it's so hard to think about, right? Like, she'll be an adult, and she'll move out and she'll go somewhere. And you really won't know like, I mean, are your parents alive? Yes. How often? Do you talk to them? Every day? I talked to my mom a lot. I texted my mom a lot. But some people don't. I know. I know. Some people just don't. I don't I don't think my wife speaks to her parents, like a handful of times a year, and it's very normal in their family.

Patty 1:03:29
I know. And it's yeah, it's pretty unique. When people ask me like, Where are your parents and my other five minutes away? How often do you see them? Pretty much every day?

Scott Benner 1:03:37
Yeah, it's just it's interesting, I guess my statement is, is that it's it's very interesting, looking backwards, what you think your job is when your kids are little versus what it actually is. And it's not something you figure out until they're older. And somebody can just explain it to you. So, I mean, you just do the best you can you make good decisions, you model well, and you hope that they pick up some of that as they move forward. Right? That's how I see it, I could be completely wrong. No, I

Patty 1:04:07
think you're right. I think you're right. And, you know, we just kind of I'm like, all I can do is worry for the next few years. I mean, I'm going to worry but I'm trying to do a better job of taking that worry and just using it for good energy versus like all of this like running around, not, you know, not doing a good job, I just have to move forward and get get it done and definitely have been doing better in the last couple years. So in a way that pandemic helped just for me to be able to see everything on a daily, daily daily basis. And now she's back at school, ya know, she's back at school. She's, you know, it's, it's kind of under good control. It seems like you know, I have a great relationship with our school team, their amazing teacher principal, or LPN, or nurse, everybody is just we all work in it as a team and everybody seems to be in agreement now. No, I'm not always gonna have that. But it seems like things are going okay, right now.

Scott Benner 1:05:05
Good. That's excellent. I mean, listen, I've known you for 45 minutes. It sounds like you're doing a terrific job. You're listening. We didn't even talk about the personal part where you like, you try so long to have a baby. And then you decide to, you know, adopt. And then 16 months later the kid gets diabetes.

Patty 1:05:24
We don't talk about that. That's the whole diagnosis story.

Scott Benner 1:05:28
But that's okay. No, but my point is, is that is that like, that's, you're a person, like you. You mean, how many times have you had build up expectations that have been dashed? And then you've, you've been flexible and readjusted, and then the next thing that happens, and you're like, What the heck, you don't I mean, like, like, I mean, it had to have been incredibly sad, and somewhat disappointing, to like, finally find a baby and then start medical problems immediately. Like, it just it's overwhelming, I would imagine.

Patty 1:06:02
Yeah, you're the second person that said that to me in the last week or so if they asked me if I was, you know, I was disappointed. Finding that out. And I think I was just, I was just so sad. It was a grieving process. I was, you know, I had this baby, this gorgeous little baby that was, you know, just plump and yummy. And, you know, and we were so excited over the moon being parents, and all of a sudden, I saw her over the course of two months, lose a lot of weight. And you know, and she was so little to begin with, and just see seeing her and get sick all the time, and not knowing what was happening. And then her getting diagnosed, I just watched her and I said, Wow, what happened to the baby that we had didn't have to worry about this. We didn't have to prick her finger like 678 times a day and wake her up at night to pick her fingers. Because we were doing it all the time. It just, it was a whole grieving process. And I didn't do well, I did not do well, if it wasn't for my husband, I think I don't know what would have happened because he's the one who took the reins and said, I can't let you continue like this, because someone has to take care of this situation. And y'all give you your time, but you better you know, it needs to be over quick. And so I think he gave me a couple, two or three weeks and just been a mess. And then I finally was, okay,

Scott Benner 1:07:21
sideline, get some oxygen, but I'm gonna need you back out here in a second. I mean, look, I mean, I don't know what could be a more human thing, if you can't even talk about the letdown because it's attached to a person that you love. But here I'll give you an example of it. From the from the other morning, in the middle of, of, you know, we had just stopped this seizure from like going full. I mean, she was having it, but it didn't get you know what I'm saying like it didn't have long to go and we got her right back out of it again. So now we're getting her together. In that time, I am not lying to you. While I was naked in the Holiday Inn Express bathroom talking to my daughter and her friends after this seizure had happened. I get a text from my brother 24 hours after my mom got the news that she was in remission. And it said mom has COVID Oh, and I'm standing in that bathroom in the text mom has COVID pops up to me. And I'm gonna tell you, here's what I thought it was a split second. But I thought, Could everybody who needs something from me just me alone for a second? Just a second, please. Because I'm just out here trying to see my son graduate already really disappointed that my daughter's not here. And now this is happening. And in the middle of that seizure. I had that conscious thought like, I need to stop this for her health and well being. But I also need to stop this. Because if I don't, I'm leaving right now. And I am not seeing my son graduate. And he's not even going to know why. Right? Like, I have to fix this right now. It's the it's like it was the parenting moment of all parents demos. I was like this can't go wrong. I have to get I there was a moment I felt like I willed her to be okay. You know, it was just it was insane. But then in the middle that mom has COVID I was like, Are you kidding me? Like, the floor gonna open up and I get swallowed into hell. Like when is that happening? Is that now like, you know, like, or am I gonna have a heart attack? Like, I don't want anybody find him naked in a Holiday Inn Express. You don't I mean, Patty stock it's not a good luck missing. They're gonna they're gonna think math right away, you know? And I don't need that. But the truth is, I'm gonna say I hope it doesn't sound I feel like I'm gonna sound like I'm bragging for a second but It all the things I've been through in my life when I was a kid and being adopted and growing up that way, and having a baby who has diabetes and all the things I've been through, I could not have been better positioned for what happened this weekend. I really just kicked its ass. It was it was really something like I was when it was all over. I was like, Wow, I'm like, this is like, the thing I tell people is actually what happened. You have to have these experiences over and over again. And they're most of them are not going to be pleasant. But one day, you're going to have that experience. You're going to really need it and it's going to come through for you. That is exactly what happened.

Patty 1:10:36
Yeah, yeah, that's true. That's, that's a good take on it. That all of these things are preparing you,

Scott Benner 1:10:43
Patty. It's the only it's the only thing because what's the opposite take is I run out into traffic. Okay, because like you can't like there's no other option. Right? Paddy, like you, you're gonna go on the sideline, take a breath. You gotta get back in the game, because what else you're gonna do? What else am I gonna do? I know, we're not gonna wish away their diabetes, or their add or whatever the hell else is gone with them. Like it's this is it. This is the game. You know what it is? Yeah.

Patty 1:11:10
It's like mad. We're in it.

Scott Benner 1:11:14
You were so funny. In the beginning, you were like, I've been married for 25 years.

Patty 1:11:19
I'll tell you this thing. Oh, oh, dear God. Wait for the sweet release of death?

Scott Benner 1:11:25
I know. I know. He will don't listen, I think if you stay in the game, it's a win. Yeah, I agree. A lot of people bail a lot of people do. I'm not. I'm not flooded by it at all. So this is what I signed up for. And I mean, you just like you, I didn't think, you know, I was gonna have to learn what hyperlipidemia meant, or type one diabetes. Like I didn't think I mean, if you think when my daughter was born, I was like, you know, one day, I'll probably have an incredibly popular diabetes podcast. I wasn't. I was like, Oh, I have a daughter. That's lovely. Like you don't even like anyway, all right, Patti. I gotta ask, is there anything we haven't talked about that we should have? No, I think that's it. I appreciate you listening to everything. I talked a lot, too. I apologize, Patti, you caught me on a bad day.

Patty 1:12:18
It? Is it a bad day? Or is it a good day?

Scott Benner 1:12:21
It's a good. It's a bad day, if you want to talk more. It's a good thing. Listen, the episodes, I think the episodes terrific. And it's just that you said when you went down the road of talking about not being afraid and and being afraid and not being able to be afraid. I was like, um, it's malpractice. If I don't tell you this story. You know what I mean? Yeah,

Patty 1:12:42
it is, I would have been very upset with you. And I would have thought Why didn't he just share that story at that time when I was talking about fear?

Scott Benner 1:12:50
Podcasts malpractice is what it would have been? Yeah, totally. I don't have podcasts, malpractice insurance. So I can't do that. You were terrific. I really appreciate this. I have to say I probably owe you another episode. So if you ever want to come back on in the future, you let me know.

Patty 1:13:08
Thank you. Yeah,

Scott Benner 1:13:09
I really did. You were very easy to talk to.

Patty 1:13:12
I'm glad I talk to a lot of people for you on a daily basis. Because your job? Yeah, I'm, I'm an education. So yeah, talk to a lot of people.

Scott Benner 1:13:25
You're very good. It was very easy to speak to you. So thank you very much. Thank

Patty 1:13:28
you. Thank you very much. I appreciate what you do. And then yeah, I will. I will look to come back on.

Scott Benner 1:13:35
Excellent. Good. Well, then we'll make it a date. Hold on one second for me.

A huge thanks to paddy for coming on the show today telling most of your story before I told mine. And I also want to thank Dexcom makers the Dexcom G six and Dexcom G seven continuous glucose monitoring systems. You cannot go wrong getting Dexcom dexcom.com forward slash juicebox. Get your diabetes supplies including insulin the way we do at US med call 888-721-1514 or go to us med.com Ford slash juice box to get your free benefits check and to get started today with us med. I want to thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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#826 Defining Diabetes: Meet the Need

Scott and Jenny Smith define diabetes terms In this Defining Diabetes episode, Scott and Jenny define Meet The Need.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends and welcome to episode 826 of the Juicebox Podcast

Hey in this episode of defining diabetes Jenny Smith and I are going to define meet the need. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you're enjoying Jenny and you'd like to hire her, you can she works at integrated diabetes.com. Are you a US citizen who has type one diabetes or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box and fill out the survey when you complete the survey. You have helped somebody living with diabetes, you're moving diabetes research forward and you may just help yourself T one D exchange.org. Forward slash juicebox. I have an unprecedented amount of time before the music stops. Let me just tell you, thank you for listening to the show. And if you're really enjoying it, leave a beautiful five star review and a rating wherever you listen. Great reviews help other people to find the show.

If you're looking for a New Year's resolution that's achievable. Listen to a Juicebox Podcast series. If you're newly diagnosed, find the bulb beginning series. Trying to understand what all these words mean. Defining diabetes has over 50 episodes at this point, you're listening to one right now. And if you're really ready to dig in the diabetes Pro Tip series is the way to go. You can subscribe or follow the show for free on Apple podcasts, Spotify, Amazon music or wherever you get your audio even audible. Melissa says Pro Tip series set us on our desired path from the very beginning from a 12.9 a one C A diagnosis to a 5.2 in one year with no honeymoon. You can find the series and more at juicebox podcast.com Right at the top in the menu. Or you can go in the audio app you're listening in and just do a search Juicebox Podcast bald beginnings to finding diabetes, diabetes pro tip or how about the diabetes variable series, you think you know what's impacting your blood sugar, maybe you don't completely understand the diabetes variable series will help you to there's a mental wellness series defining thyroid, a collection of episodes about algorithm pumping. And don't forget the afterdark series where people tell stories that most won't share. And finally, if you're looking for support, or community, the Juicebox Podcast private Facebook group is absolutely free, has over 32,000 members. And it's just waiting there for you so much good information, you can dive in and talk or just kind of sit back and watch whenever you need. That group has it. This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod five, and Omni pod dash. Learn more and get started today at Omni pod.com forward slash juice box, you may be eligible for a free 30 day trial of the Omni pod dash. Hey, Jenny, how are you?

Jennifer Smith, CDE 3:38
I'm good. How are you? Scott? I'm

Scott Benner 3:39
excellent. I'm excited to be here with you today to define, I think a phrase I made up, but it's still an idea that that um, everybody needs to know about meet the need. And I make up those words. I would expect that you did. Okay. All right. I think it needs to be defined because far too frequently. I mean, I think there's a couple of ways people get to it. But the way I see them get to it mostly is there's an idea in some people's heads that there's an amount of insulin that's the right amount of insulin and there's an amount of insulin, it's too much insulin. And instead of meeting the need that their body is, is is expressing asking for Yeah, it's asking for, they say things like well, I don't know anybody else who has a Basal that high or you know, doesn't doesn't five units or 10 units sound like too much and. Right, right. And to that I always respond to you just you need to meet the need. So

Jennifer Smith, CDE 4:42
and I think the interesting thing about that, and defining it in the way that you've defined it just meet the need. I think people will find it very valuable to listen when we do talk about the math.

Scott Benner 4:55
Yeah, right. Well, don't you always Well, I get a lot of notes like this, I just had one the other day from this guy. And he says, we moved my son, I think, I think it was a son doesn't matter. I moved my kid from on the pod dash to Omni pod five, but it's not working. And right away, it's like, it's it's not working, the thing doesn't work, you know, the dang machine doesn't do what they said. And and so I go back and forth with him a couple of times and messages, it must be it must be irritating to message with me because I asked leading questions that I need the answer to and I want you to think about, I don't actually tell you anything if we're talking to each other. So I asked him a couple of questions. And I said, I said, you know, what, what were your, like, average blood sugar's like in the past, you know, where were you sitting stable, and the kid wasn't sitting stable. Like, I'm not saying you have to be at all the time, but the kid was like 90 and 100 120 130. So already, I'm saying, Okay, sounds like there's not enough insulin. And then I asked a couple more questions. And it turns out that there's a lot of corrections throughout the day. So insulin that the kids not getting through carb ratio and not getting through Basal. They're coming in and pouring in extra. And that's when I said to him, I don't know if it's your basil. I don't know if it's your carb ratio, or both. But you are not meeting the need of either of those most likely, right? You're using a lot of extra insulin. You need to get that into, into your settings. Right. Right. And so he's meeting the need. Almost he was almost getting there. But he didn't know he was doing it.

Jennifer Smith, CDE 6:38
He was doing it by adding instead of having the system learn and deliver the amounts that were actually needed. Right, and you can, you can certainly continue to do it that way. It's just more work. It's more work following things and giving all of these adjustments and corrections and things along the course of of time. Corrections should really be not as frequent. Because if you are getting the right amount, whether it's from an automated system, or from just a manual dosing strategy, whether pumper MDI, right, the background needs to cover enough, and then the Bolus is the main reason really, for bolusing is for the most part around food. Yeah, it's carbs, right. So if that is keeping your glucose in the target range that you are aiming for, then your Bolus is meeting your need, because you shouldn't after that have to add a heck of a lot or any correction to get that Bolus to bring you back to your target. If however, you're adding adding, adding and that's just your regular routine every single day, you're constantly micromanaging. There's missing insulin,

Scott Benner 7:52
you and I think a lot of people find themselves in this position where they're like, Well, I don't know, I made my basil point nine five, because, you know, 1.1 like, I can't believe my basil is over one unit an hour. But it's just it's, I don't It's not ego, but it's it's this idea of like, it's embarrassment, maybe like, I'll I use too much insulin, you're not you if it's 1.1 an hour, it's 1.1 an hour, it's not too much insulin, I think carb ratio, the same thing here. People say all the time. Oh my God, my carb ratio. Oh, it's one unit for you know, one unit covers eight carbs. It's terrible. Like I'm like, It's not terrible. That's what happens. Now, maybe maybe your maybe your style of eating is meat that needs that right like so there's an there's another conversation there. If you wanted to eat lower carb or better foods or something like that, maybe your carb ratio would change. But in the moment, it's one to eight artists artists, an 18 year old kid who's in college, Arden's carb ratio is during the daytime. One unit covers four and a half carbs. Okay, so And there's still times where I'm like, oh, geez, that wasn't enough. We need more I'm not embarrassed by it. Because why because art is a one see, even when she went away to college was in the low sixes in and and so we're meeting her need now. Same thing with basil. Same thing with everything, your carb ratio, your adjustments, but it can also, I also think of meet the need, in what I guess would be 180 degrees different way. Meaning if you're low all the time, you're you're not meeting the need, you're exceeding the need. Correct. Right. So in my mind, I haven't said this a long time probably since we made the Pro Tip series but in my mind, I think of a stable line on a graph as possible. If you're if you're Basil is right, you can keep stable. There are other variables that are going to try to derail you and you may not keep stable but there is theoretically out there and amount of insulin minute to me In an hour to hour that would keep you stable whether you were sitting, standing running, eating a cheeseburger or having whatever Jenny eats. I mean, whatever healthy thing she eats. I don't even know how to guess at what your needs, and she's told me what she eats, and I still can't get strawberry

Jennifer Smith, CDE 10:16
bites my chia pudding. Yeah, exactly.

Scott Benner 10:20
So, so no matter what you're doing. Alright, listen, if you're managing yourself as an adult, or child or anywhere in between, if you're managing this insulin thing with an insulin pump, or you're doing MDI, where you're just looking for things to be easier, I think you should check out the Omni pod five, Omni pod five talks to your CGM, and it sees your blood sugar rising or falling, and it makes adjustments to your insulin automatically an algorithm, an algorithm based pump that's trying its best to keep you stable. It's amazing, the technology is insane. And if you're struggling, or just want to step back a little bit on the pod five really could be the way to go for you. You can learn more at Omni pod.com forward slash juice box. Now if you don't want automation, you can still get to Bliss wireless with Omni pod with the Omni pod Dash. And as a matter of fact, you may be eligible for a free 30 day trial of the Omni pod dash and that is something you can find out at my link omnipod.com forward slash juice box. Ali pot five is the only tubeless automated insulin delivery system that integrates with the Dexcom G six CGM, and it uses smart adjust technology to automatically adjust your insulin delivery every five minutes, which helps to protect you against highs and lows without multiple daily injections. For full safety risk information and free trial terms and conditions. You can also visit my link Omni pod.com forward slash juice box. My daughter has been using an omni pod every day since she was four years old, I think you're gonna love it. Now, is it possible for you to do that manually, it's obviously would take most of your life. But with these algorithms, you know, getting better and more plentiful. We're all going to be in that situation someday, you know, where you're going to have stable lines that are lower, you're gonna have some spikes around missed meals, and maybe we'll exercise and get low. But for the most part, the stability away from variables is going to be something else because that algorithm is constantly meeting and re meeting the changing need no matter which way it goes. So can you do that on your own? You can I did it for years, it was a lot of work. But it was doable. And to be honest, I found a rhythm with it. And at some point became less work than you might think. Anyway, you just there's an amount of insulin you need. And don't be embarrassed by it and just do it. And don't don't continue to look at low blood sugars over and over again and go I don't know what's happening.

Jennifer Smith, CDE 13:02
You got your high blood sugar's I mean, when you talk about stability, I think it also requires you to talk about where are you looking to stay stable. Because as you say, Basil alone should hold you stable when there's nothing else in the picture, whether it's food, or stress, or exercise or illness or whatever it might be, your Basal should hold you pretty stable, if it's at the right dose. And that stability, again, should be where you want to be sitting. If you want to be sitting at a 90 blood sugar. Your last Bolus should let you sit there and basil should carry you on as many hours at that 90 to 100 place as you want to be. Again, if you're running, you know I'm comfortable at 120 Okay, then you're a little less. Yeah, hold you there at 120. Right. And you might need 40 units of Basal insulin to hold you at 120 Where somebody else at 120 only needs 18 units of Basal insulin again. So you have to meet your need. Yes.

Scott Benner 14:08
Right. And don't match yourself to anyone else. Like no, no, just I mean, yeah, it's just it's gonna be different for you. Your variables are different. Arden is a different person. When she's home from college than she is when she's she's more active at college. She's up on a schedule. She you know, here last night, for the love of God. I think she went to bed at five o'clock in the morning. I think I walked in there and what are you doing?

Jennifer Smith, CDE 14:34
I know you're 18 But you still need sleep?

Scott Benner 14:36
What are you doing? She was waking me up tomorrow at 10 I was like, how do you think that's gonna happen? That's not gonna I 10 o'clock on my garden. Get up. Get up, aren't I Okay, take another hour. But yeah, I mean, it's just it's very important. It's very important. Technically, meet the need, and it's very important emotionally. And you got to just find a way to let yourself go. Like, I mean, don't get me wrong. If you're in a situation where you have like massive problems and you're using weight, you know what, like so much insulin like I can't even like make my pump last three days or whatever. Maybe you get to talk to your doctor about pairing another drug with it to help you. I'm talking about, you know, generally speaking for most people who are in an average situation, right? Yeah, absolutely. That makes sense to, is that the talk around that, because it's very important, but it's without its without context in the diabetes world. Like, if you don't listen to this podcast, very few people are going to talk to you like this, you know?

Jennifer Smith, CDE 15:38
Absolutely. Oh, absolutely. Most people don't even understand. They don't understand the variable nature of insulin at all. It's the reason that most people are like, Oh, you're on a pump. That just does it. All right,

Scott Benner 15:52
magic pump. Well, listen, even with ice. I paid specific attention to Arden's stuff overnight, because we just switched her to a different version of loop. And so I wanted to just be on making sure everything's going the way I expect. And you can see overnight that even though you're you say to, you're telling the loop, like look, this is your insulin sensitivity, and this is your Basal rate. But the loop still for many hours overnight, it's like hey, I'm just gonna give you half that basil or a third of it, or two thirds of it. Oh, God, I took too much away. Here's I need to add back 120% of it. Like, you know, you're giving it this leeway to drive the itself driving. You know, I'm always talking about like, keep it in the lines. This is just the self driving thing that sees the line on its own. It was oh, and then just rolls back. Oh my god. How did that never occur to me?

Jennifer Smith, CDE 16:43
Yeah, it is. It's kind of like the bumpers on like, the like bowling, right? Yeah, it is. It's like okay, we gotta go back this way. Now Oh, no, let's move you back

Scott Benner 16:53
this way in the bumping and nudging episodes. That's exactly what I'm talking about. It's kind of manually bumping yourself off the off the lines on the road. And an algorithm is just seeing the line coming and bumping itself back.

Jennifer Smith, CDE 17:05
Yep. It's got a predictive nature to it. So it can watch further out from where you currently are.

Scott Benner 17:10
Yeah, so meet the need, no matter what system you're using. And, you know, inevitably I'm gonna get a note for sighs like, you don't talk about MDI, it's the same thing. It's just, you know, you're putting all of your insulin in for basil at one time, instead of it being spread out. Sure, you don't have the ability to take away point five an hour, you know, or something like that, which would maybe be helpful, but you're going to find an amount of injected Basal insulin, that does the job, as well as you can get it and then you're going to have to make adjustments with your meals and corrections, correct.

Jennifer Smith, CDE 17:41
That's absolutely. And that's why, you know, one of the only places that we really recommend if you were going to look at your dose in your MDI is really to look at your overnight to see what is your Basal holding you overnight, is it you know, when you go to bed, you started a number does it hold you there until you wake up the next morning, and if it does, but the number was higher than you wanted? It's not necessarily the basil. It's where your last Bolus left you off. The basil just kept you there. So in that circumstance in my night might not be that you have take more Basal hit might actually be that your Bolus needs to be different.

Scott Benner 18:23
Okay, so Well, I appreciate you doing this one with me. Thank you very much. Excellent.

Hey, huge thanks to Jenny of course for coming on the show as she does if you would like to hire her she works at integrated diabetes.com You should go check her out. I want to thank also Omni pod. I'm serious. I said earlier, my daughter has been wearing it on the pod every day since she was four years old. She's 18 and in college now, the Omni pod has been nothing but a friend to her. And I think you'll enjoy it as well. Omni pod.com forward slash juice box head over there. Get started today. If you're enjoying the Juicebox Podcast, please tell a friend your doctor or somebody. Anybody everybody scream. Anyway, just tell somebody about the podcast. It really helps the show. I'll be back very soon with another episode. Thank you so much for listening.

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