Scott Benner 10/23/18 Scott Benner 10/23/18

#190 Stopping the Arrows

T1D Management talk with Jessica…

A type 1 diabetes management conversation with D-Mom Jessica.

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

Scott Benner 0:00
Hello and welcome to Episode 190 of the Juicebox Podcast. Today we're sponsored by Dexcom Omni pod and dancing for diabetes. Please go to dexcom.com forward slash juicebox. Dancing the number four diabetes.com or my omnipod.com forward slash juicebox To find out more about the sponsors. Okay, today's episode is with Jessica. Jessica is a nurse and she's a D mom. And she's really chatty. So she's perfect for the podcast. And we talk a lot about management ideas today. That's why today's episode is called stopping the arrows. Please remember that nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise, always consult a physician before being bold with insulin.

Guys, if you just give me one second, I promised a shout out Libby rose in the United Kingdom. She's six years old, has had Type One Diabetes for a year and she listens to the podcast with her dad. Hi, Libby rose. Hope you have a great day.

Jessica 1:17
I'm Jessica, I guess. Yeah, I'm Jessica. I'm a nurse. I'm a labor and delivery nurse. So I knew very little about diabetes before Type One Diabetes before my son was diagnosed.

Scott Benner 1:29
And how old was your son when he was diagnosed?

Jessica 1:31
He was eight, almost nine and now he's nine. So it was about 10 months ago.

Scott Benner 1:36
Okay, so you're not even quite up to a year now. Okay. And I'm trying to decide if I'm what people okay. So talk to how to tell people how we met.

Jessica 1:49
Oh, I think I just started messaging you over Instagram. Because I just, I was so sick of struggling to find answers. That I thought warrants. We don't curse BS. Right. Right. Um, because I, I remember, I got home from the hospital. And all the overwhelming parts of it sort of settled? I mean, no, I mean, I'm still overwhelmed, but you know, kind of settled. And, and I thought, What does a normal blood sugar look like? You know, in a child of my son's age who's not diabetics, and I typed that into Google, and I couldn't even get an answer for that.

Scott Benner 2:30
Um, that was pretty disturbing. Right off the bat, like, I don't even know what to aim for.

Jessica 2:36
Exactly. And I knew that what they were telling me to aim for, just in set sit right with me. But I didn't have the information behind those feelings to tell them I don't agree with you. It was just sort of a gut and that didn't feel you know, I like if I'm gonna start arguing with somebody cuz I'm actually not very confrontational. So if I'm gonna start arguing something I need to feel like 100% correct. And, and so I didn't, I didn't know. I felt sort of lost because the information I was getting felt like it had good intentions, but it felt like, like, Bs, and and and when I tried to find information that sat right with me, I couldn't find it. Until I found your podcast.

Scott Benner 3:21
Well, that's so both. So when you are out in the world, like basically, someone would say, I think, you know, I keep my kids blood sugar at this number. I aim for this, then people all had different target numbers.

Jessica 3:32
Um, yeah, for the most part, but they were, they were just high and it didn't feel right. Like, somebody told my husband to set his pie at 250 and his low at 80. Because you can have my son's alarming because that way, he can have a warning before it hits 70 because 70 the world and the world is ending, you know? So I was like, No, no, now are high. I knew what you're gonna say you didn't even I didn't even let you get the whole question.

Scott Benner 4:06
So, so let's for the people listening now, like Jessica and I spoke on the phone a couple of times. And Jessica is, Jess, you are, I mean to call you chatty, I think would be an undervalued ability to talk. Right? So there are a couple of people. I it doesn't happen very often to me where I stand in a room and I think I can't get a word in here. But don't be sorry. It just definitely is I've been on the phone with Jess and she's talking and I think to myself, is it necessary that I'm here and but but that's good for this because you will not be at a loss for what you for what you think or how you feel. So that's so anyway, guys, you'll probably hear me talk less or I'll be just as already asked me to throw up a stop sign if I feel like she's getting it. Yeah. So So okay, so we did talk on the phone a couple of times. And I think that the first time for anybody who's ever called privately, I think that what I do is I try to in about 20 minutes, give you what I think is like a high level kind of overview of all the things that we talked about on the podcast. But I try really hard to leave people that I speak with privately with a couple of ideas. hyzer more difficult to deal with. And those are, you know, that you should set if you have a DAX Kami to set your high threshold lowers that you can react sooner that, you know, you need to make small adjustments to insulin whenever you can, because large adjustments end up with lows later and like just these little things, but I try to do it kind of conversationally, and at the same time, I never know, if it's actually valuable for the person I hear back from a lot of people were like, Oh, this has been great. So I kind of think it is. But even as I'm saying, and I think this is a lot of information in a short amount of time. So after we spoke on the phone, did you do it? Was it helpful at all? But

Jessica 5:55
yes, it was so helpful. Because I had those thoughts already. And that's just, you know, no, but but I did, but nobody was supporting them. And so to have your support just gave me the confidence to stand up to my husband who came over to the site this side very quickly, but or to feel confident walking into the endocrinologist office, you know, being able to defend, you know, what they were seeing on our graphs or whatever? Or, or even just to friends who have some children with type one or or friends who don't, you know, who were asking me to educate them. And I felt like Who am I to educate them on one kid? But then I felt like, wait, I know, more solid, yeah, I felt more solid in the things I thought I knew. Because Because you backed me up. So

Scott Benner 6:51
there's two thoughts. And there's one that it is really important for somebody to, you know, kind of echo your, your feelings. Because when you have a feeling about something that you have no basis of understanding for, even though you're you start thinking, you know, I'm seeing this day after day, this makes sense to me, it still is hard to stand up and count yourself as a, you know, for somebody who really knows, and right. And so that's where that really kind of like simple concept that we talked about on the podcast all the time, but you just have to at some point, you have to trust your gut. Like, you know, something makes sense to you, you have to trust that at the same time. The other thing I heard was your husband bumped into somebody who told them 70 to 250. This is the range at 80 to 250. This is the right, yeah. And so and so that's what he heard first. And I think that's maybe, to me, the most important thing about getting good information out quickly, is that the earlier in your diagnosis, you hear good information, that becomes your rule. You know what I mean? So So if someone hits you first with, hey, just try to keep them between 102 50 then you think, Oh, well, then that must be good. That must be okay. Someone just told me that I related very simply to the idea of, you know, we don't use no valade. But when we were when my daughter was diagnosed, we were given no vlog in the hospital. And in my mind, that's what insulin was. It did not occur to me to wonder if there were other insulins I just was like, Oh, this is insulin, the hospital gave it to me. Uh huh. You know, so I think that's important that, that for people to hear that if you do hear kind of good information up front, that can kind of be your frame of reference. And so when you have that frame of reference, what did you do with it? Today, when you're sitting at your desk, and you're kind of zoning out and don't know what to do, and you're just looking for a little break, but you need to look like you're still working? You know what I'm talking about? Go to dancing for diabetes.com. That's dancing, the number four diabetes.com See if little kids with diabetes, dancing doesn't pick your right back up and give you enough energy to get through the day. The frame of reference for like, Hey, I should be a little more aggressive with insulin. I shouldn't be scared of this. I tried it like when you when once you had this? Isn't the comfort what how did you react in in your son's? Oh,

Jessica 9:05
well, first of all, I went from being terrified and freaking out and feeling and that's not my personality. I mean, I definitely have some, some I'm high strung, but I don't have anxiety. It's weird. I'm just hyper, you know. And I became like, anxious, like, I had anxiety for the first time. And I went from that to feeling less scared and feeling more empowered. And, and that was a huge step in taking care of Ty was feeling and for him even to have confidence in me. You know that that? And, and so yes, I was bolder. I love that word. By the way. I was bolder with the insulin. I was. And we were doing MDI forever and we just started our pump two weeks ago, but we were bolder, we experimented and I told him, you know, we're not perfect. diabetes can be unpredictable, and even You know, his activity level or whatever can be unpredictable. But every time that something doesn't go the way we want it, we're just going to learn from it, it's going to become part of our arsenal of weapons against this disease. And, and that was another obviously another philosophy I learned from you, that really was hugely beneficial as well, because then we didn't expect things, we didn't expect to have things go wrong, but when they did, we didn't feel defeated, or, or we didn't take them as the setbacks to then go back to not being bold with the insulin, we just used them as, like, as new information that will make us even better later on. And, and so, so empowered, even by our own mistakes, we're being empowered, you know, and, and just learning all the time and, and, and taking not taking risks. But following our guide, and not being afraid to and knowing that we know how to get out of the lows and get out of the highs, and it'll be all right, and we'll just be better for it. Because we'll have learned,

Scott Benner 11:06
I have to say that in almost 200 recordings, you're the first person to use the word philosophy. And I was like, Oh, that's like, that's fancy. I'm gonna think of that better now. We'll have to say now that nothing you hear on the Juicebox Podcast should be considered philosophy. But, but I'm glad that I'm especially striking to me, is the idea of you not being afraid, because I genuinely believe that that's, that's step one. That when you're afraid, everything else we talked about becomes difficult or impossible, because you're always second guessing, erring on the side of caution doing things like that. And you also said that it gave your son the confidence in you that you know what you're talking about. And I think that's undervalued, too, because kids aren't stupid. And when you're faking it, they can figure that out a little bit, you know, and so it is, it is a big deal for them to believe in you. Absolutely. You know what I mean? So and you can't, you can't give off that vibe if you don't genuinely have it. Right. Like, I'm sure there's some people are pretty good actors, but

Jessica 12:13
I'm terrible, terrible, terrible, liar. Awful.

Scott Benner 12:16
I love. I love that you described yourself as high strung. Now I just think of like a cat with not all of its hair. And

Jessica 12:25
it's more, um, I have ADHD. So it's more like an add sort of,

Unknown Speaker 12:30
I don't know, no, no, no, I

Scott Benner 12:31
definitely get what you're saying. Like there's a, if there's a way to be excitable, or, you know, even scattered without being anxious. And anxiety is terrible. Like, I've, I didn't know you were going to bring that up. But I've been thinking about that a lot, the last couple of days, because I was talking to somebody who brought it up, you know, about like, my anxiety, my anxiety, and here I am a person, I don't feel that way. I don't have anxiety, like there's strife or turmoil, and I'm just like, I can see the path to how this works out. So I don't, I don't worry about the other stuff. And, and I tried to say that on here in the past is like, you know, the concept that like, worrying is a waste of your imagination, because you really don't know what's gonna happen in the future. And to pretend that you do, you know, to make a worry in yourself is really just putting something into the future. I mean, if you're going to make something up, you should make up something fun, not not not worrisome that I get that there are some things that are more tangible than others, you know, you know, insulin is dangerous, you know, I understand worrying about that, but not to the point where it causes me anxiety or that but, but that's not everyone's reality, some people are just anxious.

Jessica 13:46
Now, yeah, like, you just get caught in this loop of, I don't know, like negativity, you know, just, oh, you know, this happened to my family, and we got to live with it for a whole the rest of our lives, and then just that thought then goes into it, and oh, you know, all these, these terrible things could happen, and then you just sort of get more and more negative. And so then my usual, high strung sort of just happy, I mean, people used to laugh at me like that I live in this little bubble, you know, of, you know, just I was always like seeing the bright side, even like, as a nurse, you know, all my patients are so sweet and so great. And my friends or my colleagues are like, not all your patients can be that great. We've had some really, you know, and I'm the best in them. I was always like, the cup is half full, like the bright side kind of person. And and this happened. And so all that energy sort of became more negatively.

Scott Benner 14:42
You know, your baseline for expectation. Yeah, something bad's gonna happen.

Jessica 14:46
Yeah, yeah. And, and so, yeah, I sort of just snapped out of that recently, and it just feels it feels so good. And yeah, and part of that is I was getting Tyler his pump that just felt like a huge win, because we fought hard for that. And, and yeah, just feeling more empowered, like really just feeling like, you know, we, we can take this on and and we'll we'll be we'll be good at it, we'll be great at it, you know, we'll just make a positive thing.

Scott Benner 15:17
Yeah, it's interesting how you just put that idea of getting a pump is empowering just because you won the battle not so much about having an insulin pump, but about setting out to take something about diabetes and and kind of slay it and beat it. So do when you ask for a pump initially, did

Jessica 15:32
they tell you you know, kind of Yeah, I mean, you just got this look of I don't know if you're ready kind of thing. Because Tyler, when I asked for it, his insulin requirements were very small. And I was told I think he was on at the time four units of the long acting of basic bar. And they're like, I think he should be he needs to be on at least five in order to get a pump. And and that didn't make any sense to me. Because with a pump you you don't even you can turn off your Faisal, you don't

Scott Benner 16:06
even know you spoke up and you push through with your with your endo, you've you forced their hand.

Jessica 16:14
Um, I tried to it didn't work. I tried to I found so well, I convinced the endo, we were ready for the pump. And then I think that that I want that little battle I won. So then the nurse educators were like, okay, but then you need to wait for a class to open up, they do these pump classes. And I'm like, why do I need a pump class? I've been doing so much research, and I've been listening and and and i also have this amazing friends that we made through my son's a part of trial of, of a study trying to not through chat. Well, they're related. I think it's at the Diabetes Research Institute in Miami.

Scott Benner 17:03
Oh, cool. I'm speaking at a thing that I think is benefiting them in April.

Unknown Speaker 17:08
Oh, really? Cool. Yeah. No, I'm

Scott Benner 17:10
there. I'm using I'll be in Orlando. And I think the I think the proceeds from that go to the ri Yeah,

Unknown Speaker 17:16
I'm pretty sure. Oh, it's

Jessica 17:18
an interesting place. Um, maybe I want to work there one day. I'm hoping well, so

Scott Benner 17:21
I so I just I just got a note yesterday from Robert. And Robert listens to the podcast. And he went to his, you know, went to his son's endo, and said, We want to get a pump. And they said, Well, you know, you can't have a pump until you've had diabetes for six months. And he said, that doesn't sound right to me. And I said I would just I would just go around them. And he immediately did he called the pump company that he wanted to use. And he said, I want to get started on trying to get my son an insulin pump. And my doctor's office is being resistant, and they're gonna help. Oh, really? Yeah. Because it's, I mean, it's tough. It's a leap, because then you're, you know, you're gonna drive a wedge a little bit between what your doctor told you and this, but he's just not willing to wait. So he's gonna try it on his own. I can even just it's, it's, listen, it's an arbitrary thing. Six months? What does that mean? Why six months? Why not? Seven? How come that four months? Why is it not nine months? Like, what is the? What's the, you know? What is that?

Jessica 18:20
What does that mean? And what's the premise? Yeah, is it because they want you to learn insulin through injections first, or? Or? I don't even understand what what what do they think is? Is the value? What are they looking for? Take away the number. What are they looking for?

Scott Benner 18:38
I am not I am at a loss for understanding because people will advocate for it like, Oh, you should have to do it with injections. First, I don't know what the difference is between how the insulin gets in my body? Why is it different? Because I push it a needle or I push on a button. It's

Jessica 18:51
still anything. I'm learning more about insulin, nowadays a pump than I did with injections. If it was just, it was Yeah, I

Scott Benner 19:00
think that there are like sort of some old timey concepts that we hold on to a little too long. And you know, you need to understand how to manage diabetes with a needle before you can do it with a pump. I get the over arching ideas of like, you know, well, what if your pump fails? What are you gonna do then? Like, I probably have them FedEx me a new pump. And

Unknown Speaker 19:22
you know, when you reach that, and plus,

Scott Benner 19:24
yes, then I would have to figure that out. And so why do I have to do it for I mean, you know, for six months or a year, some places say a year, if then for a year before, before, we'll let you think about a pump. It just seems arbitrary to me. If you're really I think when you're ready, you're ready. And yeah, you know, so I don't know why. I don't know why you have to follow the rules of when somebody else's ready. If I'm ready in three months, then I'm ready. Now if it's if it's two weeks, then I'm ready now like what's the point? I don't know.

Jessica 19:55
This animal Yeah, on that, you know, just and then these classes these classes were

Scott Benner 20:00
Well, I just saw someone on Facebook this morning say, hey, my pump arrived at my house, should I just go on YouTube and watch a video and start using it? I was thinking, yeah, you should do that. It's just, it's funny too, because there are different like their brains that work different ways like yours, or the this person I saw on Facebook this morning, like, I've got it, I should start. And then you see other people that before they even have it, they're like, um, could you please list all the things that could possibly go wrong? I'm like, Wow, that's a weird way to think about this. But okay, you know, like, like, so I want to know, everything that could go wrong, or, you know, what, what are the pros and cons of this is like, I, you know, all you're inviting is for people to come on and tell you their problems. And I hate to say, but a lot of problems with anything, forget insulin pumps, it's a lot of times, it's just user error, it's your inability to understand and the only way you're really gonna understand that is to do it a couple of times, you know, so it's, it's interesting, but moreover, that people's minds are like, please, someone tell me what's gonna go wrong. So I don't have to worry where other people think, I can't wait to do this to see what can go right. It is really just a mind get on me.

Jessica 21:10
I do I met and that's where I was at, I was like, I just can't wait to get my hands on it and just start doing things and learning just like before, when we would do things, and if mistakes happened, or it didn't go right, then we would just learn and that's a good thing. You know, I don't need a class, I'm just gonna, you know, I'll read the manual, or whatever, I don't I never, I'll fumble through it. And, and I'll, you know, shoot ideas off my husband and even my son Tyler. And and we'll figure it out. You know, and, and I got to tell you, they're very well intentioned, but I didn't learn anything. I didn't learn anything from that those pump classes and, and they really were just, they were detrimental, I think to my Tyler because they were Monday nights after school from for four hours. So we had to pick him up from school, drop my other two kids off at my sister's and then spend four hours in a windowless room

Scott Benner 22:08
for how many how many Monday nights did this go on for?

Jessica 22:11
That was three Monday through Monday night. 12 hours? Yeah, and no. And then a Tuesday, all day? Well, it was with me all day. But it was I would say I was like probably another four or five hours.

Scott Benner 22:21
So 1617 hours to learn how to use a pump.

Jessica 22:25
But we didn't, but we didn't really

Unknown Speaker 22:27
learn anything.

Jessica 22:28
We learned about carb counting. And so this was a simple, simple carbs versus complex. I mean, things work that were like, it almost felt condescending, you know, those

Scott Benner 22:39
concepts aren't specific to pumpers. those concepts are for everybody. So it's a pump class, where we're now going to go back over diabetes again.

Jessica 22:48
Now, one mention of extended bolusing not one mention of Temp Basal. Both of the things I actually would love to sit down and just like, think learn better, you know, think about Yeah, it's it's gotten like a sort of, you know, because I'm still trying to figure those out. I'm

Scott Benner 23:07
at the end, you can fill out for feedback.

Jessica 23:09
There was and we left early and like, Oh, no, I forgot to turn this in. And then yeah, it wasn't no but fine. It was a time suck. For me. It was difficult finding childcare for my other two kids. But I actually think it was harmful to my son because he he actually had some anxiety, which has always increased by his blood sugar's By the way, which I which is one of my main motivators for keep keeping him hidden low, not low, low, but like, you know, on the lower end, um, and, and he also has my ADHD, or kid, but he is sitting in that room, and they were really just expected to be quiet the whole time. Oh, yeah. And, and caring and seeing all this. And it's sort of not being not being able to move because, you know, he's active, and after being in school all day, and then this, it just was just, I think it was really hard on him, he came home and he he, he did not, he was beaten by it.

Scott Benner 24:12
I can't tell you, he took it took any of the joy he might have been considering coming and he just be pushed into a classroom situation where he wasn't even allowed to participate. And

Jessica 24:26
I think he, they wanted him to participate. But I think they wanted him to participate in that sort of way. That that, like, you know, the dream vision you have of the kids participating in your class,

Scott Benner 24:38
the little adults that raised their

Jessica 24:40
robot you like Yeah, and that's not we these kids really are like, you know, he he wants to tell you a story about one day when blah, blah, blah, blah, blah, you know, and everyone's like, keep wasting time.

Scott Benner 24:55
Listen, this is a longer episode today. So I'm not gonna waste your time with these long drawn out ads with the great stories, although they are really good personal stories, but nevertheless, let's get right to it. I think you'd like the Omni pod. And I think the only way to know for sure is to try it. But how do you try an insulin pump without buying it? Luckily for you, Omni pod has a free demo, they'll send you out the pump. I haven't really talked this through in a while, but you get a pump in the mail and on the pod, no, it doesn't work, don't worry, it's not gonna like, give you insulin or anything like that. You can put it on and wear it. And try it for a number of days to see what you think. That's pretty amazing. Because what you're going to find, I'm betting is that when you put it on, you're going to forget that it's there. And that's going to make you feel comfortable moving forward, my expectation, maybe your expectations are different. Maybe your results will be different. I can't be getting to know your life. But I can know that trying is the only way to find out. And it's free, and it has no obligation. So there really is not one reason why you wouldn't do this, all you need to do is go to my Omni pod.com forward slash juicebox. There's links in your show notes, there's links at Juicebox podcast.com. And by now I've said it enough, you must remember, go there, fill in the tiniest bit of information. And on the pod, we'll send you out a demo and you can try it for yourself. That's it. Look, I'm done before the music's over Miami pod.com forward slash juicebox. Oh, you know what I did forget one thing, sorry, on the pods on Instagram, now, go follow them. My on the pod on Instagram, tell my center. There's some people are good communicators and some people aren't. So my son was in. He's a senior in high school. And he gets that he texts me the other day. And he says that we're in a opioid thing right now. And I'm like, what he goes they brought the cops in and everything. We're all in the in the you know, in this big auditorium, too. There is a woman up here speaking and, and she's just, like really broken in her delivery. And she doesn't seem to know what she wants to say. And she's stammering and like this whole thing, and he's losing focus. So I jumped back with my text back. I said, Maybe she's a drug addict, and they're bringing them in to show you what could happen, you know, like, and like, and he laughed a lot. I was trying to lighten them up a little bit. And about 20 minutes later, he texts me back and he goes, but you know what, it's actually it's a police officer. And, and she's just a really terrible communicator. And so they brought in just the wrong voice. Like, I'm sure what she was saying was great. But the way she presented it was so off putting that the kids just shut off. And and that's a real concern. And sometimes it's the message. That's the problem. And sometimes it's the it's the way that's delivered. I was at something recently where there was a keynote speaker for diabetes, and I was like, wow, this is terrible. Like I got up and left at some point. I was like, I can't sit here and listen to this. It was a person who was telling me having diabetes is hard, and it's scary. And I was like, Okay, and then I thought okay, like I gave him the benefit of the doubt. I'm like, the next thing they're gonna say is and Here are ways that you can make it less difficult or less frightening, but no, just the delivery of the message to a roomful of newly diagnosed people that this is really scary and really difficult. And I thought what benefit is this?

Jessica 28:28
Like? My huge, that's my problem. That's one of my biggest problems with. With with my experience so far, with my son's diagnosis is, yeah, I just feel like I keep using the word empowered. And it's true. I just feel I feel like most of them, it's, it's, oh, but you better not do this. And you better be careful of doing this and just call me and I'll tell you if it's okay. Like I think that they expect that I learned very quickly after the first week, you know that I didn't have to keep calling them anytime I thought that a little something needed to be changed in in Tyler's care. Yeah, you know, and, and the nurse in me is always like, I need a doctor's order, you know, I need to call so I'm pretty proud of how quickly I got out of that. Because after the first week, I'm like, I can't keep calling and asking if it's okay, if I get more inflamed even though it hasn't been four hours yet, like four hours.

Scott Benner 29:25
I'm like 30 minutes later, I'm like, headset that again. But But you know, it's just it's a really important idea that that that I you know what? I'm going to struggle for exactly how to say this. So the message and the way it's delivered is it's just very I mean, it goes back to the thing we said at the beginning it's just it's very, very important that to not start people's lives with diabetes off in chained down scared, you know, immobile can't make it decision on my own. You know, I am heartbroken by the people that I talk to every day, who sit and watch their kids blood sugar at 300 after a meal, and it's eating at their guts. I know I should be doing something I know I should be doing something. But my doctor told me not to. And or I heard this, and the kids blood sugar's 300 for four hours. And then suddenly, magically, at four hours, they're like, oh, now we can bolus this or now I can give more insulin, except now all that food has been digested. And now all this insulin you're going to get for this 300 isn't necessary anymore. It was necessary three hours ago, it's not necessary now. And then the kid ends up at 40 later. And then and now. And now my life with diabetes is I did exactly what I was told my kids blood sugar went up to 300. It sat there for four hours, I did what I was told again, then his blood sugar went down to 45.

It went up and then someone says, Those words that be so angry, I could curse? Oh, that's just diabetes. And then No, it's not just diabetes, our inability to understand how insulin works. And moreover, the people who tell you those things, just are not good communicators of the information or they don't understand the information. And that is that ends up being the truth when a doctor or a friend or anybody looks at you and says, Oh, you know what? Well, that's just, that's how that is. What they mean is,

Unknown Speaker 31:27
I don't understand how to explain it. I don't know any better, or

Scott Benner 31:30
I don't know any better. Right? Right. Yeah, that's fine, by the way, if they don't know, but the problem is, is when they spread that to the next person, as this is the gospel of diet. Right? Right. And then you get down to people who are like, oh, that shit. It's just what it is. And then that that goes further, by the way, then, then it keeps going, I'm gonna preach, I'm, I'm all lit up. Today is the march for their lie. I don't know when you'll hear this. But say the kids are all doing the march 1 thing. So I think I'm in protest mode. But but so that's the first step, right? Well, nobody, nobody understands how to fix it. So that's just diabetes. And then when your guilt or your shame or your frustration comes around again, and you reach out to into a community and say, I don't know what to do, I feel so bad. My kids blood sugar's that high. Someone else who feels that way, too, will come along and admonished you of that, they will let it go, we'll say, look, there's nothing you can do. You've done everything you can do. And now just in those three steps, we've taken this person who wants nothing more than understand diabetes, so they can help themselves or help them kids. And we've turned them into a passive person willing to accept 300 blood sugars because they genuinely believe that not only is there no way to fix that, but even if there was they couldn't possibly understand it.

Jessica 32:50
Yeah, and they just feel so helpless. And so out of like, just, it's out of your control, you know, just powerless against this and, and it just makes you feel so sad. And, and, and you're just not healthy.

Scott Benner 33:06
No, it's terrible. It's the abs. It's absolutely terrible. And it is but it happens over and over and over again. Every day to newly diagnosed people. Hey, be afraid be scared. This is horrible. Oh, you can't don't give anybody insulin for food. That won't work. Oh, their blood sugar's high. Don't do anything. Wait, now give them a bunch of insulin. Oh, they got low. That's just diabetes.

Jessica 33:31
Or, or there's a lot of and I agree with it. I mean, it definitely plays a huge role. But or there's this emphasis on Well then, you know, you're not competing or what did you feed your child, you're not feeding your child the right thing, which then makes you feel even less, like more inadequate as a parent like, Oh, I let my kid have his favorite. Whatever. And, and now I caused this high blood sugar and it's all my fault and and then you feel like like a kindergartener being scolded by the teacher, you know, all the time. And then you start making a

Scott Benner 34:03
list in your head of foods that apparently we're not allowed to eat anymore.

Unknown Speaker 34:05
Exactly. Yeah,

Scott Benner 34:08
none of that being true.

Jessica 34:09
which controls your life even more, you know, and just so let

Scott Benner 34:13
me sound just let me sound like a pompous ass for a second. Okay. Oh, no. So I talk a lot. You know, I've mentioned this a number of times in the podcast right that the people can't miss trust themselves. It is a it's a basic human function. If you walked around Miss trusting yourself all the time. It would be deadly. That's where anxiety comes from. That's where you know, if you're always thinking, Oh, well, I think I should do this. Maybe I'm wrong. That is it's crippling. And so I think it is a basic human thing to believe the thought that pops into our heads. Do you mean like, a problem comes up? This is the way I consider to take care of it. I must be right because I thought of it. And then here we go. And and what you just described is what ends up happening like, you know, All of a sudden somebody's like, Oh, well, you know, his blood sugar wasn't high because of insulin, it's because you let him eat pancakes. It's your fault for giving him a grilled cheese. You know, like, oh, potato chips. That's what you did wrong, you know. And then the next step, the next step their brain thinks is, if you cut out the carbs, and so then they're now their brain thinks low carb is the answer, or their brain thinks something else is the answer, or the first thought that pops into anybody's head they believe to be true. And they probably should, right? That is that does keep the world moving. It keeps everybody going. The problem is that no one ever steps back and diagnosis a thought in levels, then there are levels, the thoughts, there's what occurs due immediately. And then there's the perspective of I don't know, the other person, there's the perspective of an onlooker, there's another perspective of a, someone who's maybe better educated than you smarter than you understands math better, like, it depends on what you're thinking of. But there are plenty of people who would have a different initial thought once when they heard the problem. If you really want to get to the bottom of the of the issue, you have to accumulate all of these initial thoughts from all of these kinds of different minds. And in there somewhere is the answer.

Jessica 36:14
I wouldn't hundred percent agree with you. I mean, it's all about perspective. And learning that yours is not the only one

Scott Benner 36:21
and difficult to do in the moment when you're nervous and upset, and your kid has diabetes, and your husband is at work, and he hasn't really listened to you very much. And there's a pipe between me in the basement and somebody should cut the lawn, and I need groceries, but I don't get paid on Thursday. And when all this other stuff is going on to say to someone I need you to sit down and, and really, you know, put a whiteboard up on your wall and start drawing bubbles and lines and figure this whole thing out. No one has time to do that. And the only thing that will fix that is that is we all have to just kind of believe in our hearts that it's the first thing that pops into our head isn't always the right idea. And that there may be a better answer out there, and we should search for it. It's when you give up the search for that better idea that you get stuck in whatever position you're in. And then I always feel that that's what I feel badly about. Because I'll tell you that a lot of people figure diabetes out and they go off on their world, and they leave the community. And they live this happy life. And that's beautiful. But there are other people who disappear who just gave up. And you can't fault them because they've just been battered with bad information so often that they get to that point where someone admonishes them, and they're out there and they let it go.

Jessica 37:35
And this is where I'm gonna blow some, what's the expression blow some smoke Ana,

Scott Benner 37:41
I don't have a lot to say,

Jessica 37:42
I like clean, yeah, I'm gonna, I'm gonna be whatever, I'm gonna fluff up your podcast, because, because that's where your podcast is so important, because that's what gave me what I needed in that where I didn't like the perspectives or the things that I was being told. And then I finally found you and, and I was I was screaming, I would be like, yes, and like, bright. And I'd be talking to you all listening and folding laundry or in my car. And actually, my husband started to, like, make fun of me for it, because he'd hear me upstairs putting laundry away. Like, I know, and he'd be like, Oh, she's listening to the podcast again. Because, yeah, it's just, it's, it's such a wonderful source of have the right kind of, you know, the information that makes you feel I'm kind of my dog, it's fine. Usually, that's like, then he's all excited. Um, but, uh,

Scott Benner 38:42
we'll just That's very nice. Let me stop you. That is very nice. And I appreciate that. But I want people to know that I understand that I'm that it's not like, I just had this, like, I didn't look at diabetes. And just imagine all this at one time. I'm not some I'm not the Great and Powerful diabetes, AWS. I, I because I had the blog, and I was writing about stuff, I have a record of my thoughts. And when I could see things appearing more and more, I kind of in my mind think, well, that's important. You know, not being afraid is important. Pre-Bolus thing is important. Like as I would go along the way I would just hit these things, I'd be like, well, this is important. That's important. This is important. And then once we started talking, once I started talking about it on the podcast, then I could see how people reacted to it more in real time. I was like, okay, that is important, but I should say it more like this. Or, you know, when I say something like you have to trust that what you know, diabetes, that diabetes is going to do what you know, it's going to do, you know, it's almost not English, right? Like you have to trust that what you know, diabetes, it's going to do that thing. You know, when when, when you say that, you know, most of diabetes is just timing of insulin and the amount like you just have to get the amount and the timing right. Once you do that. You can pretty much bolus for anything That's it. That's a hopeful idea. It's not a description of how to do it. But I, but I, when I went through them, I kept going through them. And through them, I whittled them down Actually, I've done a lot of speaking this year. And it's basically just going in and, and it's, it's just kind of like doing a like an overview, but a kind of complete overview of those thoughts. And I was forced to sit down and break them down into slides into like, into thoughts. And I was like, this is it like, this is these, I forget what it was 1815 slides. This is the this is the podcast right here. So a slide will come up, and then I'll talk about it. And then and move on and on and on. And I was like, wow, this really works. So I did it in person, have them that person a number of times, and people are getting that reaction right away. They're coming up afterwards. And like, wow, you know, you fast forwarded me through all these thoughts. And so what I'm going to do, and I don't know if this will come out before that, but I'm going to get Jenny Smith back on the CD that's on a couple of times. Fabulous, we're going to talk about each slide. But then each slide is only going to be a few minute podcast, maybe five or 10 minutes, they're going to go up individually. And then so people can kind of hear them because I think that might be a good way for people who are coming in new to the podcast to kind of catch up a little bit

Unknown Speaker 41:19
like a little Crash Course.

Scott Benner 41:20
Yeah, cuz because there are people listen, I bless you, people who I get notes from who are like, I just powered listen through the entire show. Like I just do 100 episodes. That's amazing, thank you. But for the people who can't do that, this, maybe this will fast forward them into the conversation. constantly hear from doctors, well, you have to have diabetes for a year before we let you do this or six months, or they always want you to have diabetes for a while before you get technology. That's an old fashioned way of thinking. Dexcom shows you the things in days and weeks that it takes someone without a continuous glucose monitor to learn over the years or months. So if you want to fast forward your understanding of how Type One Diabetes works, so that you can make these amazing decisions that lead to better outcomes you need to get started right now. Seriously, you've heard people on this podcast who were diagnosed 10 2030 years ago, they lived in a different world with Type One Diabetes than you do today. The dexcom, continuous glucose monitor it fast forward, you right to understanding. That's the important part, isn't it? It's understanding how the insulin works, how it's going to affect you. It's understanding how your exercise and diet and sleep patterns, how all that's going to affect your blood sugar, so that you can do the things that you hear us talking about in the podcast, with your insulin, and live the life that you're hoping to live instead of one where you're just constantly wondering what's about to happen next, what's about to happen next. Don't be afraid. Open your eyes, see the data, make great decisions. That's what Dexcom is gonna bring you go to dexcom.com forward slash juice box with a link in the show notes or Juicebox podcast.com to get started today. dexcom.com forward slash Juicebox.

Podcast did not mean for you to come on and talk about how much you liked the podcast.

Jessica 43:31
But, but I do. I really think it was a big part in saving my sanity and making me feel like validated. And and

Scott Benner 43:40
so let's say finding community. And good information is what saved your sanity. Right? Like it wasn't me just happen to be me. You could have possibly found a blog that did the same thing for you. I don't know.

Jessica 43:55
I don't know. But finding you and then and one other person that that nurse that I told you we met through the trial my son's a part of Yeah, somebody in real life that you met. She She's amazing. She she's had a she's she was diagnosed with type one in her early. Oh, I remember earlier mid 20s when she was already a nurse. And then she already was sort of making her way into like diabetes research and then she really dove into Diabetes Research and now she works at the d-ri she's she's pretty big bear. And she's just so so she lives it. She teaches it she studies it and and she's so warm and and she really cares and she's phenomenal. And I want you to get her on the show.

Scott Benner 44:45
Please send me some of your if you haven't sent me an if you did, I forgot. But we'll I'll get back to it because there are I also have a list I'm looking at of like have this person on the show. This person plays basketball in college. I did this and I'm like, Brian, I'm like talking people about perfect restall athletes that I want to get on and trying to use the connections, I have to get those and, and it's funny, I said to somebody recently, I'm like, there are days when I think I could put this podcast up a couple times a week, but at the same time, it would be too much. And then, you know, we get lost somewhere, I think weekly is good.

Jessica 45:17
Oh, I don't know, I listened to so many episodes, I just I powered through them. But I guess there's a point where you get the fatigue? I guess? I don't know, I haven't reached it yet.

Scott Benner 45:27
I'm very good.

Unknown Speaker 45:27
I love it.

Unknown Speaker 45:28
Well, I think that,

Jessica 45:30
but I did want to say something that you you, you made me think of when you said that, what you said what this is years of experience, that that you've come to this place where you're able to put all this phenomenal information out there. And, and that's encouraging as well, that, that, you know, you have this, these great tips and, and it all, you know, become better at timing and, and you know, the amount of insulin and all that, and that it's possible, but at the same time, you know, a good portion of, you know, becoming rock stars at this is also going to be just experience and you can't, you can't fake experience. And so even if, you know, you feel like you're being bold, and you're trying your best and and and you have more setbacks than you think you should be focusing on that those are just going to accumulate as part of this experience that over time is going to be so you know, key to your success is, um, it's something that really helped me too, because

Unknown Speaker 46:40
it helps you not

Jessica 46:41
just having a positive attitude. And knowing that it's just it is there's some things that you just can't, you can't skip ahead, there is a long game. And you know, and that helps in feeling at peace with with everything when it's when it's not going

Scott Benner 46:55
the way you want it to. And it's very, yeah, that it's super important to remember two things. I was really, really bad at this for a very long time. So if if I can get here, then anybody can. And that just because Arden's a one C is where it's at. And I'm not, you know, I never mind sharing it, it's been between five, six and six to for over four years. Now. That doesn't mean that she has this super flat Dexcom graph at 87. That's not how it goes. Her blood sugar shoots up a couple of times a day. We'd you know, I see 180 or 200 once or twice. It's

Jessica 47:33
made me feel so much better. Yeah, the way that they were talking, and you said that to me.

Scott Benner 47:37
And I'll tell you this, yeah, and I'll tell you this, too, like, um, yesterday, yesterday morning, I just totally booted the whole thing. I mean, really, really bad. And her blood sugar went to like 330. And I was like, Oh my gosh, all right. And so uh, but immediately she's at school, I immediately did the things that I knew. First of all, we should have done that we we didn't, there was a little confusion a little rushing around in the morning and something got missed. And so we made you know, we added Temp Basal like big time, like doubled her bazel rate for like an hour and a half made large bonuses, and all with an eye on getting her blood sugar back down for lunchtime. And I'm going to tell you that I got her blood sugar from like 320 to 110 in two and a half hours, and not like a falling 110 like I brought it in for a landing on purpose. Because she was because she was at school dancing for diabetes.com go to dancing for diabetes.com. Is it fopr? No, it's not. It's the number for dancing the number for diabetes.com. Or you know what, find them on Facebook or Instagram, actually, they're doing a whole thing on Instagram this month to make you smile. You want to smile, go watch kids dancing. Everything that I talked about on the podcast that leads to most of the time to kind of stable blood sugars and staying ahead of carbs and everything, all those skills were the same skills I use to bring her blood sugar down without making her a lot. And so, even though it's thinks that our blood sugar jumped up like that, and I have to I will very, very honestly tell you, I don't see 300 a handful of times a year, but okay, it happened. And just to your point, didn't panic, I didn't beat myself up about it. I just reached into my bag of tricks and I was like, we're gonna do this, this and this, this is gonna work and it did. And that was awesome.

Jessica 49:41
And I need help with that I need help with. I mean, I'm trying to figure it out with extended bullet saying and with Temp Basal, when to use what and how I'm still, I mean, we're two weeks into the pump, but I'm dying to figure those two out. And I'm with with just No bolusing and with Pre-Bolus saying I feel like I mean, I messed up not mastered a god, I got good at that already before the pump. So I feel like they're there. I'm pretty good. But I don't want to just use the pump for that I want to figure out the extended boluses and the Temp Basal.

Scott Benner 50:19
They're all just extensions of how to like time the insulin. So, you know, yesterday I figured so it happened in segments, right like, we had a she woke up in the morning with a blood sugar that was not commensurate to what her CGM said. And it was a brand new sensor. So it was off a little bit. So we calibrated it got it on, that was good. But she needed food, or carbs at a time in the morning. We didn't we wouldn't usually give them to her. And because I didn't feel like in the moment like that the sensor was working yet. I kind of laid back for a second. Then I came downstairs and the dog made a mess of his bed. So I'm cleaning that up. And I forgot about the carb sheet. And she comes downstairs and I thought as I thought, ooh, jeez, we should probably I should Bolus for that I can't believe I forgot that. She says I'm gonna eat this for breakfast. And I was like, Oh, okay. And we gave her some insulin. But I just didn't consider that the first carbs we used for the low blood sugar, we're going to do what they did. And I should have I knew too, and I just didn't for some reason. And maybe 20 minutes later, she's at school and I see an arrow up. And I'm telling you, I never see an arrow. So I was like, Oh, so I texted her. I was like, Oh, yeah, we got a ball a second. So we both and I thought that should do it. But I was still for some reason erring on the side of caution, which is not something I usually do. I think in the back of my head, I wasn't trusting the sensor. And that was that was throwing me off a little bit. Then the thing that she took the eat this muffin, she took with her hit her so much harder, because there was no Pre-Bolus. And there was no there was no aggressiveness that there usually is. So all of a sudden the one hour goes to two arrows. And now I'm like, okay, I stopped myself and I rethought the whole process. I used this much insulin, but I know I should have used this much. And so I have to get this large amount of insulin Enter. And for this situation, I think it was about six units, like I needed to get six units indoor.

Jessica 52:18
And so so you got that amount from subtracting what you gave, no,

Scott Benner 52:23
I know, I didn't even consider when I gave in the first I put the carbs we use for the low blood sugar, the carbs, I would I should have thought about for the muffin. And I also put into account double arrows up Yeah, where it's gonna go, how much it's going to need when it gets up there and this whole thing. So now I know this is a massive amount of insulin. But if I dump it in all at once, it might stop the arrows a little faster. But it's also going to cause too much of a fall on the other side. And I did not want to compound this problem by having to feed a low later. So instead, I added a temp bazel. And I stretched it out. So some of that instantly stretched out over 90 minutes, I think. And some of it I put in right away. And we slammed it really hard. And then I was able to watch the arrows and how they slowed down. And when they turned to back to level and then when they started to go diagonal down at first and it wasn't I go down or do I did one of those were the the arrows steady, but the numbers falling, you know,

Unknown Speaker 53:20
yeah, that way. Yeah. And then

Scott Benner 53:22
it diagonal down. And then I was on the ski slope. You know what I mean? Like this, this right? And that one that you can't always be sure is going to stop or not. But as I watched it, and I watched and I watch, I was like this one's gonna pull up and stop right where I wanted to. And I'll tell you that when it did, I was so like yesterday I had, we had to go into Arden school to help her to sit with her, her counselor at her lunchtime and pick her classes for high school. So I was going into the school, and I walked in there looking at her blood sugar and I looked at my wife and I was like I have to tell you something. I I'm even a little stunned at how well I handle this one. And and but but not not as like a not a humble brag or not not quite so humble, right? But just I was even like wow, because I wish you could see how little effort I put into stopping that all happened like that was just I talked about that all the time. Like at some point. These things that when they get exploded out so we can talk about them seem like all this time and effort. I saw the arrow made my decision did what I did never thought about it again. I knew I did the right thing every once in a while I look back and check the error to see if it was doing what I expected it to when it was but it wasn't this long. drawn out painful hours do not mean like

Jessica 54:42
I do so do you think that you made it to speed up the effect? Like what so as when you started making these changes? How quickly did you start to see the results of the insulin you're putting in

Scott Benner 54:53
not fast enough, but I had to. I had to I had to trust it though because the carbs had Such a head start on the insulin. I was already when I saw double arrows up and she was 220. In my mind, I already said this is going to get the 300, there's nothing I can do about it, if I'm not gonna be able to start getting to 300, if I give her enough insulin for it not to get the 300, then she's gonna get low later. So I had to put in the right amount. And and wait a little bit.

Jessica 55:22
So you find out when you put in a large amount of insulin, it does seem some I guess,

Scott Benner 55:26
oh, there's enough insulin you could have picked up I could there was an amount of insulin, I could have given her that I could have had her back at 100 and in a half an hour. But then she would have needed to eat our lunch. Right. And there is a worldwide by the way, if that high was coming, as lunch was coming, if I saw 222 arrows up and everything was going on with those carbs that I just talked about before in the lack of insulin, the there would have been a way for me to bolus her 15 units of insulin, stop that thing right away and then get her eating and just use all that insulin as a Pre-Bolus. For a meal. I've done that. That's some high level stuff, though. Because you got to trust that the food, you really got to know what the food is going to do that because you've given a ton of insulin. But um, but yeah, I mean, listen to sometimes the best way to kill a high is to, is to have a meal coming up. And so you can just you can just use so much insulin, and then just use the entire meal to catch the insulin instead of like a juice box or a tablet. You know what I mean? Like it's Yeah, it's it's, the concept doesn't change because the amount of insulin gets bigger. The concept still works, you just have to have the timing of it.

Jessica 56:36
With a bigger amount of influence. I've seen that it just it affects them faster. Oh, shut it down faster. Yep.

Scott Benner 56:43
Yeah, you just have to be is but I'm saying with a with a with a 302 arrows up the amount of insulin that would take to crush quickly. Yeah, definitely need carbs. Late. Yeah. And then there's a trick in there to get the carbs in without causing the bounce.

Unknown Speaker 56:59
And, and,

Unknown Speaker 57:00
but the roller coaster, but but it's.

Scott Benner 57:02
But if you stop and listen to the conversation that we're having right now. It's all just timing. That's, that's all it is. Yeah, just timing. And that comes like you said earlier, it just comes with a lot of experience a lot of over and over again, experience and a lot of messing up and going off. That's not what I wanted to happen. But then instead of beating yourself up about it, you you take something from it. It's just it's a very, it just is what it is. It's a long game. And like you mentioned it earlier, but at the same time once it hits you. It's such a magical spot. Like I can't tell I wish people could have seen that whole thing happened yesterday. Like I wish y'all could have been flies on walls. Because I wasn't panicked. I wasn't upset. I wasn't that, you know, I didn't spend the rest of the next three hours like wringing my hands about it. I just, I was like, Okay, I should have done that. Why didn't do that? And I'm going to do this, this and this now. And it's going to work. And then

Jessica 57:56
and then and then you felt you felt, what's the word? You wanted to be humble about your brag, but I think it's a beautiful thing that you were able to not beat yourself up over, you know, it not going well. And then to feel so great about when it did when what you did worked and what went well, I mean, why shouldn't we make a bigger deal about the positive thing and try to, you know, acknowledge but sort of move past the negative thing versus I took themselves up and then yeah, and then are like humble, I think it's great that I this disease, it can beat you up and to just end to feel to feel that you can brag about something and to feel great about about something you did and the knowledge behind it that it wasn't just this fluke, I think that's awesome. I don't think you've seen, um, well, you're nice. whompin makes me feel like yes, and I'll get there really is

Scott Benner 58:52
the goal of sharing it is to make someone else feel like oh, maybe that's a place I could be. Well, I'll get to that. I could get to that one day. That's what I turned on my wife and I joked I was like, seriously, I did really good with this. And I showed it to her. And she like looks at me and and very sarcastically goes, Hey, you should start a podcast about that. I see what you're doing there. It's fun. But but but no, I and I you do see people online who are sharing their a onesies or their successes. We should all be in there going Wow, congratulations every time I see that I throw a like on something or a thumbs up or something like that. That because that's amazing. Just because I'm not having a good day doesn't mean you're not having a good day.

Jessica 59:32
And it is there. Yeah. And you know, and and if you just have the confidence and the willpower you can get there and and and why not? Why not take this thing that can make you feel really, really down and feel and feel like you rocked it without without it being you know, cuz some people would say well, you can't make it into I don't know, like I get like you're getting you're getting a piece of candy when you succeed or something like that. Like, you know, the I get that, like,

Scott Benner 1:00:01
I don't think of it that way. I think of it just the way you said like if, if we're gonna, if we're gonna say we're supporting people, then somebody with a nine a one c can't see somebody with a six a one C and get mad at them for having a six a one say, you have to say to that person, you have to say to that person Wow, man, that's amazing, good for you. And then try to figure out what they did that you could maybe do. And and instead of being, it's just very important to take the drama out of all this, you don't need to be so dramatic. You know, like, it's it sucks when you're not in the place where you want to be. But other people's success should look like hope not like Exactly, yeah, not like they're kicking in the butts. Yeah.

Jessica 1:00:39
Yes. And that's what I was always looking for. And yeah, that's what I've sort of leaked that onto was, you know, the parents that I found on social media that are that are that have more successes than failures, and that post, you know, they're great agencies, and, and then I, you know, watch what they're doing. And I'm to see the hope and the possibility and to feel like I have some sort of control, or, or power, or something over this disease that can make you feel really powerless. It was was just, I needed that

Scott Benner 1:01:13
I was speaking to my mom, I was speaking to a mom the other day, and I don't want to use her name. But she said that I thought what she said was so brilliant. She said, if my kids don't do well, on a test, I always say to them, what was there somebody in the class that did? And when they say yes, she said, well go find them and find out how they studied for it. And I was like, wow, that's just simple, good concepts. And I've said stuff like that to my son in the past too, which is probably why I agreed with her so much. I was like, well, I've had that thought. But it was, but it's such a it's such a smart idea. Like, if someone's having success that you're not having figured out how I was watching survivor the other night, I am still one of those people who enjoy survivor No, even though it's been on for like, ever. And there was there were the they were putting this puzzle together. This one team's like throwing this puzzle together really fast, the other team can't get it figured out. And finally one of the people who couldn't figure it out, just turned and started watching the one who was doing and I was like, you're never gonna catch up to them. But there was this moment where that guy said to himself, I'm not figuring this out on my own. And the only ex example I have out here is them. Let me stop and look. And sure in the course of the game, it's probably cheating. But but but at the same time, it's it was smart, it was all he had left, he couldn't figure it out on his own. So he just looked at somebody else who had had it figured out ahead of him. And I said that here a million times. This podcast is not an example of me being better at this than you. This podcast is an example of me being farther along in the process than you. That's all you should just I should just turn around every once in a while and yell back, hey, do this. Try that walk around here. And you should maybe say to yourself, well, that guy's already walked up this path, he probably knows where I'm going to twist my ankle. So I'll listen to him and what he tells me to go a little.

Jessica 1:02:53
Yeah, I that's what that's what I did. I mean, I I'm with MDI, which, which I still wanted to talk to you about, but um, you know, I, we started off at 9.9, right? A one C, and then I hit Tyler's first and the appointment after his diagnosis, the three months later, he was 6.5. And then, and then we got it as low when I was still begging them for a pump. It was 5.9 and then right at the pump class apparently they took everyone's a one sees and sort of quietly handed it out after right before the beginning of class and, and I thought we had had some wheat. I thought he went through a growth spurt or I don't know what was going on. But we were fighting some highs, but we thought we you say you know how diabetes got aggressive. You got aggressive back, and I and I listened to you. And I did that. And his agency actually went down again to 5.8. And, and, and yeah, and, and so my point of that, not only is to brag, because I'm sorry, but

Scott Benner 1:03:58
that's really, you should feel good about that. That's amazing to have anyone see like that with MDI, without a bunch of crazy lows, to have the nerve when diabetes pushes to push back. That's all really big stuff. Because I just talked to somebody the other day who had that problem. I talked to him for 20 minutes. In the end, she said, You know, I think you're right. I'm just it's her his insulin requirements have gone up and I haven't moved with it. And that's pretty much it. Yeah.

Jessica 1:04:21
I'm trying to learn to like, you know, that hold let's just watch thing. Like it's like, No, no, let's let's be aggressive back. Let's not just watch, you know, because every every moment you're just watching. It just keeps climbing. Yeah, but but my point was that so you learn that through all these years of experience and yes, you're ahead on the path, but you helped me go from being at the beginning and you're miles ahead to sort of being able to see you on the horizon like, like, I'm catching up and so much faster because because you've really you've made it seem possible and you've given the a lot of good information and and so I mean, 10 months into it and and And here we are, you know,

Scott Benner 1:05:02
I'm good for you. Yeah. And you made me think of that really bad joke from Pulp Fiction. Oh, which one is the mama tomato and the baby tomato, we're walking down the street and the baby tomato starts lagging behind. And mama tomato turns around and says ketchup. We were talking, I was like, there was a moment where I was like, I'm so proud of what you're saying for yourself the

Unknown Speaker 1:05:24
baby tomato,

Scott Benner 1:05:25
like, Oh my god, this is the joke from Pulp Fiction. So maybe I have a little ADHD as well.

Jessica 1:05:35
I diagnose everyone. It's so it's it's so sad. Yeah, I'm totally. But whatever you were, my advantage,

Scott Benner 1:05:43
you realize we've been talking for over an hour now.

Jessica 1:05:45
I don't because you know, me, I

Scott Benner 1:05:49
just I don't know if people believe me. These conversations never have a goal. I sometimes as I'm calling someone and pulling up an email from them and thinking Who is this person even because I want the conversations to be so just organic. And I, I have to admit, because I just put up an episode yesterday, which again, for people will be maybe months ago when they hear this, but it was called it

Unknown Speaker 1:06:19
was the guy and has a guy I just listened. Right.

Scott Benner 1:06:22
And so Jane, Jane comes on and starts talking about all the good things the podcast did for and I thought, Oh, we can't do this the whole time. And then I just I liked I wanted very much for to have her say and I wanted for people to hear what our experience was. And then I feel like I did a really good job of directing the conversation in another way so that we could actually talk about something substantive. That wasn't her telling me that she really loved the podcast. And as I listened back to it, I thought this went really well. And as we're doing this, I think the same thing. I think that I think we really hit on what I think are some really important kind of basic tenants. And I think it's a great spot for people to, to hear again. So I hope everyone understands that it was really cool that Jess loves the podcast and got so much out of it. I don't don't feel the ways you might expect. Like, it's not like a big ego thing for me, I'm happy for you, when I hear you say that, like I'm like,

Jessica 1:07:15
that's the way you gave me about validation to keep doing what I was thinking was the right thing to do. Maybe it's just validation that, you know, you putting all this time and effort into making the podcast is well worth it.

Scott Benner 1:07:27
I mean, think about it that way. Thank you very much. That is really nice. Thank you very much to Dexcom to Omni pod and to dancing for diabetes for their support, please go to my omnipod.com forward slash juicebox dancing the number four diabetes.com or dexcom.com forward slash juice box. You guys left some new ratings and reviews on iTunes this week for the show. Thank you very much. Please don't forget that the way the show grows is when you tell someone else about it. And you take a couple of seconds to explain to them how a podcast works and how they can download it. There will be a brand new episode every week for the rest of 2018. And I am just this close and what you can see as I'm holding my fingers very close apart, but I'm just this close to securing advertising for the next year and beyond. So we're looking at shows until let's be honest, as long as you guys are listening, that's how long the show keeps going. Thank you very much for choosing to spend an hour here

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Scott Benner 10/16/18 Scott Benner 10/16/18

#189 The Tide is High

Loop, loop skip to my loop…

Tidepool's own Christopher Snider is here to talk about looping with type 1 diabetes. AP baby!

+ Click for EPISODE TRANSCRIPT

Unknown Speaker 0:00
Hello everyone, today

Scott Benner 0:00
you're listening to Episode 189 of the Juicebox Podcast. We are sponsored as always by Dexcom on the pod and dancing for diabetes. Now you can go to my omnipod.com Ford slash juice box, you can go to dexcom.com Ford slash juice box, or dancing for diabetes.com. That's the number four. While you're at the dancing for diabetes website, click on their link to Instagram. They're doing something cool for the next 34 days on Instagram. And while we're speaking about Instagram, let me say this dex comes on there. They do a great job there. But you know who's new on Instagram just this week, on the pod there at my on the pod on Instagram now flood them with messages, give them some likes, let them know you came from the podcast. Today's show is ripped from the headlines. That's right. I saw some news happening breaking in the diabetes community. And I went right to my I just picked up my phone really. And I sent a message to somebody I know. Chris Snyder. You know, Christopher, you know, Christopher Snyder, you will soon anyway, I sent a message to Chris because he works for the company who broke the news. And I was like, Hey, Chris, I know you. Can you come on my podcast? And he said, Yeah, sure. And I was like that easier it? I mean, I like to make it sound like it was bigger than it was. Now why do we want to be talking to Christopher Snyder? Well, that's an interesting question. I'm gonna answer for you right now. Chris has had Type One Diabetes a very, very long time. He is married to a lovely woman who also has type one diabetes, he works for a company called tide pool. Chris has done a lot in the diabetes community over the years. I've known him for quite some time. And he's an amazing advocate for people like you. Today, Chris is on the show, because he's here to talk about looping, artificial pancreas tide pool like this kind of a lot of words that you might be like, I don't know those words, Scott. But don't let this feel technical to you don't need to understand the words. Even though by the end, you will just know this. We are all very close to our Dexcom CGM sending data to an algorithm, a little program. Basically, they're probably live on your cell phone. And that will tell your insulin pump more insulin, less insulin, it'll help you stop getting out, it'll stop you from getting high. That's the near future. That's what Chris is here to talk about. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise and to always consult a physician before making changes to your insulin plan. I think part of my delightful charm is my ignorance. I know tide pull doesn't mean that you work on a cruise ship helping people learn to surf.

Unknown Speaker 2:35
This is true that

Scott Benner 2:36
that much I understand the rest of it. I've never, I'm not embarrassed, but I'm spread a little thin. I've never really delved too deeply into it, because it hasn't. It hasn't been something I've needed. But it is always one of those things that I think Gosh, I'm pretty sure I should understand this better. Like what tide pool is in general. And then you guys came along and started making this announcement about loop. And I was like, Alright, it's time Scott needs to be informed. So can you tell me first what you do at tide pool and and what time pool is?

Christopher Snider 3:08
Sure. So I'm the community manager at Tide Pool, which means I'm responsible for among other things, social media and email communications. So if you do receive typos emails, it's my smiley face at the bottom was in data. Christopher Snyder. title is a nonprofit organization. We create free software to view data from pump CGM. And why do we use meters all in one place? That I mentioned that it's free, it's free for people diabetes their families and clinicians that I mentioned that it's free. That's the thing that I have found whenever I provide demos of our software to Coalition's they are all most often surprised by whenever they see what all this stuff looks like in motion, which is really, really exciting. But that also means that there's a natural follow up of Wait a second, it's free. How do you stay operational as a nonprofit organization to which I say great question, eager person who's paying attention to my software demo. And I said, We are supported in part by grants from Helmsley Charitable Trust and the jdrf. They've been a big supporter of ours from the beginning of time cool. I say ours even I've been a part of the team for a little over a year and a half. But at this point, ours. And also, there's a whole research component to the title platform. And on that side of things, we do charge money. The type of platform can be used as a data back end for clinical studies. So if you've got an idea and you're conducting research and you need diabetes device data type will can help you with that. Additionally, people with diabetes we're using type will have the choice to opt in to something called the typo Big Data donation project. What that means is that we will anonymize and de identify the device data that you upload to title secure servers. And we will license those data sets out to different partners and people with a grand idea. So when you hear things about machine learning algorithms and things like that, the big data, data sets that are coming out of typos can contribute to that. This This program is entirely opt in that type of we believe people diabetes own their data. First and foremost, we don't do anything without their explicit consent. So it's like maybe it is a checkbox that you would have to check to enable that sort of process to begin. But that money that we make keeps us sustainable as a nonprofit, and it's really useful. To work at this company, we are a growing group now as we're about to get into thanks to this typo loop thing. But almost everybody, I think for the exception of one person, a typo on either has diabetes or has a kid with diabetes, I, myself am living with type one, my wife also has type one for what it's worth. And one person who doesn't have type one diabetes, he just loves devices and that sort of technology thing. And he sort of found his way through his own master's thesis into diabetes tech, and then eventually found a better title. So it's like there's, there is a very earnest and sincere obsession with getting this right, because we know what's at stake, because it's our lives. It's our kids lives. It's our spouses lives that are dealing with this stuff, too. And it makes it really impactful to work with this group. And it's been a really special ride for me to be part of this and to ultimately be one of the voices of this company. So that's the data access side. I know is Arden still rocking it? Omni pod?

Scott Benner 5:53
Yeah, Arden uses Omni pod. And she's using g six. Okay, I've never, I've never looked more into it. Because we're having, we're having so much success already. And I end up being one of those people, Chris, who's I wanted to come out of the box and work and I don't want to understand it. Like, like, that's for pretty much any of my technology. I've never been, I don't know, I don't have that gear. And I have to admit, like, at some point when someone said Raspberry Pi, and I saw electronics champion with Tic Tac box, I was like, I'm out. And, and it doesn't matter. It could have been the easiest thing to do. I saw that. And I was like, I'm done. And I think that I reflect I think I really think my opinion is reflected through most people because it is really it comes down to like compute cycles in my day. I just I don't have any more time for anything else.

Christopher Snider 6:46
So buddy, do you have USB cables hanging around your house, of course. And you have you have a google google chrome on your computer? I do. Okay, then you could use fiable, you could sign up for a free typable account right now connect that PDF, and then connect the Dexcom. And you could see all that data in one place, and also potentially donate it to research if you were so inclined. It's as simple as a USB cable. That's all you need to stifle. Yes, sir. Yes, let's do what

Scott Benner 7:10
the most interesting thing ever happened on any podcast. And that's go to the internet. So you're, you're saying I go to tide? pool.org?

Christopher Snider 7:18
I'm working tightwad org. There's a button at the top that says sign up. I see that. You click on that. That'll get you started on the process.

Scott Benner 7:25
No kidding. And then so what So basically, it's going to let me see everything from art and CGM and everything from ardens pump all in one place. Now, tell me something. Is this not? What is this not what? On the pods telling me I'm going to have soon anyway? Or is how is it different? different from what from like other stuff that everyone else is doing? Like what sets this apart? Like, why is because you guys have risen to the top? And I mean, I think when I look into Thank you mean, no, absolutely. I think there's there's a number of companies all sort of like saying, Hey, we this is what we do. I feel like you guys have have have really kind of ascended. And so why do you think that is? Why do you think people lean towards side pull over other options. Option one is your blood sugar's just doing what it's doing. And you can't say option two is it's doing what it's doing. And you can say it, which sounds better, option one or Option two. Option one, your child's at school, their blood sugar's getting too high, you'd like to do something about it, but they don't go to the nurse for three hours. So it just keeps going up and up.

Unknown Speaker 8:29
Option two,

Scott Benner 8:30
your child's at school. They're wearing their Dexcom g six CGM, their blood sugar goes above the number you've designated. It sends a little message to your phone, beep beep. It says to you, your kids, blood sugar's over. For me, it's 120 instead of three hours of a high blood sugar, what you have is an immediate ability to bump that blood sugar back to where you want it. What sounds better, option one or Option two. Option one, you're out for a run in the park. It's a beautiful day you have type one diabetes, and everything's looking good. You've put in the food you expect to handle things. But what you don't know is that 20 minutes from now, your blood sugar is going to drop pretty quickly, under 50. Now option two is the predictive alert on the Dexcom g six tells you Hey, I expect your blood sugar to be under 50 in about 20 minutes. Maybe now's a good time to do something about that. What sounds better, option one or Option two. I want you to go to dexcom.com forward slash juicebox. Find out more today about the dexcom g six continuous glucose monitor. I'm putting this ad earlier in the show because the rest of what you're going to listen to it all hinges on having a dexcom it's time to get going. If you think of your life with Type One Diabetes is not having options. I'm here to tell you there are a lot of them and they're pretty great. Dexcom is a huge part of that. Today's the day to get started dexcom.com forward slash juice box. The links in your show notes were the links at Juicebox podcast.com. Why do you think people lean towards side pull over other options?

Christopher Snider 10:05
I think the nonprofit angle definitely helps I think the personal connection and the credibility that the type whole team has built across the years the title has been around, like when you hear our CEO Howard talk about this stuff, his daughter has type one. Like he's, it's clear that he gets it. Obviously, he's the CEO of this of this entire venture. But he speaks in a certain way that is so passionate, and so empathetic about it, that it's hard to not want to run through a brick wall for him, and then know that he will be on the beat or on the other side, with some sort of, you know, EMF service to help you out in case for some reason, you actually did try to run through a brick wall. I think from a technical side of things, it what's really exciting is that there is an ease of use to it. But also there's a standardization to what we do, does that mean data comes in on an animist pump on a T slim on an omni pod on a Medtronic 670 g as those from those individualizes. But we visualize it in the exact same format no matter what the device looks like. So if you have sort of artisan or Omni pod right now, if she switches to a Medtronic for reasons, the data is still going to look the same. So there's no new process for trying to understand how to interpret the data, it's just a matter of changing the upload process a little bit, because it's a different device. And I think that that standardization, and what I believe is an ease of use, and a nice opportunity to interpret and understand your data because it is yours or your kids data in this case, I think that Ease of Access provides a lot of opportunity for people that they didn't necessarily think that they need it because there is, as my cat claws at the wall in the background is gonna make for great audio. There is a great opportunity for for that sort of like there's like a lightbulb moment, we sort of internally call it a typo moment of actually seeing all that data together in the first for the first time. Because if you're uploading your Dexcom stuff that clarity, yes, they clearly does a great job of providing Dexcom specific reports, all their trends, your weekly reports of how often your remains and things like that. That's fantastic. But what are you doing on the insulin side of things? declared can tell you that? But if you put it all together with title, for example, then you can then you have the entire context of your diabetes experience. Hey, Arden went low. What happened before that? Oh, wait, there is a Bolus over here. Was that too much? Was that too little? What's happening over there. And then you can sort of connect those dots as it were, and try to make a little better sense to hopefully, you don't necessarily want to say get it right, but have hopefully a better outcome the next time around. Makes

Scott Benner 12:13
sense. And also, I mean, it's funny, as you're talking, I thought that's not interesting. Like say I have a DVR for my television, and I'm used to the on screen, UI. But there's a better DVR that comes up but it's completely different. Like I can't I have I switch I have to switch I get a new DVR, I get a new UI and that's it. But what you're saying is no matter I can go from pump the pump to pump. My data always looks the same. Yes, sir. That's a great idea. And and how is that? So tell me a little bit about that side of like, how is that possible? Like, why?

Unknown Speaker 12:45
Like, what

Scott Benner 12:46
is it just because you're a separate entity, right? Like it you're not attached to a company. And like when when you tell me tide pool works with all these pump companies, is that something they had to agree to or it doesn't matter. But so for all of the devices that we currently support, with the exception of Medtronic, we have signed agreements for them to share their data protocols with us so that it's easier for us to implement across the board. In the case of Medtronic, they had some different perspectives on data ownership, for example.

Christopher Snider 13:14
And we had to do the work ourselves to build our own Medtronic driver. And that's why it took over a year for us to release support for Medtronic six series pumps.

Scott Benner 13:22
Tomic Sonic, I

Christopher Snider 13:24
have a different view of them to it. Well, it's, you know, it's, you know, everybody has their own perspective on it. And, and we've had plenty of conversations with Medtronic, we still have conversations with them to this day. Ultimately, I think even and I can't speak to the specific conversations, but my, my, my sort of assessment of it is that there are plenty of people at Medtronic that get it and that, you know, in that aren't necessarily believe what we believe, but they, they get it. But ultimately, it comes down to you know, certain people making those decisions. And if certain people don't feel a certain way about or they don't want to sign an agreement that that day, then Okay, and then we'll just see what happens next time. We have another conversation. But that hasn't stopped. title from pursuing conversations with different you know, pumping CGM companies across the board, like we want to work with everything with everybody. Because we believe people diabetes on their database should have unfettered access to it. And we're gonna do everything we can to provide that. And it's, you know, so far, it has been so good, but you know, as more stuff comes out, you know, hopefully we can we can stay ahead of the curve and continue to be the go to place for for data access.

Scott Benner 14:27
I think of data as experiences and I couldn't agree more. I think that everything that I accomplished with my daughter herb, I'm looking right now our blood sugar's 106. It's nice and stable. It's been like this for hours while she's at school this morning. And and the things that people hear on the podcast that then they kind of put into process in their own life and hopefully have similar outcomes. It's all just understanding your experiences, having an experience looking at it, and then making adjustments to it next time, a little sooner, a little later, a little more, a little less. That's really what it boils down to. I think that I think that for me, the cool of managing Type One Diabetes is understanding how insulin works in your body. I think that's, that's the first step to the whole thing. And so obviously more data leads you into that space. I think the word data sometimes scares people, which I think is why I say experiences. But that's what I mean. I mean, you got to go back and look and see what happened and make adjustments. Yeah. Interestingly enough, and this is a little behind the curtain, but I think it's important to know, When, when, when you guys made this announcement about loop, which is something we're gonna talk about in a second. The first thing I did out of respect to the relationships I have is I went on the pod and I said, Is it alright, if I interview tide pool about loop? Like, I don't understand the business of it like, is that somehow getting in the way of what you? Do? You know what I mean? Like, is it a direct competitor, and they very quickly got back to me said, No, absolutely talk to tide pool, that's fantastic. Because what they're what they thought was, there's going to be a way, you know, horizon is gonna come out one day, right, and they're gonna have an artificial pancreas system and everything. But if there's another way to do it, and someone can still use an omni pod and use a different algorithm, or whatever, they're, they're excited for that. They're excited for people to have more options to use their product with. And I think that that is an amazing leap, just in general, that a company would say, Hey, you know, sure, we're gonna have software that does that. But if someone else does you like it better, or works better for you, or whatever, go use that one. Like, that's, that's a great moment. For us. For people, I don't have diabetes, I know, I feel like I do sometimes. But for people living with Type One Diabetes, that's spectacular, that's a company not trying to lock you into their idea. And because their idea might not progress as quickly, because they're busy making insulin pumps, you're busy working on software.

Christopher Snider 16:43
Mm hmm. I think the key word in there that you are alluding to is choice, and providing people with diabetes and their families choice in their therapy. So like, with typo you like we don't necessarily title can dictate, you know, what insurance is going to cover. But we want to provide you the choice and the option and the ability to view that data and an unfettered way through our free software. And and that's that's sort of the vision that we have with Hyperloop is that as, as different ICG M's and AI pumps come to market and they we do establish agreements with these companies to to include them in the title loop, you know, sort of process with our AI algorithm or AI control, I'm not sure what it's ultimately going to be. But the key thing at the end of the day is to be able to sort of pick the pieces of your diabetes management that you want, and then just make it and it will all just work. And that's the promise of it. Obviously, like, you know, as we are recording this, we made an announcement about type polio today, three days ago, on Monday, the eighth and I've been losing my mind and Twitter notifications ever since. So like, you know, we haven't announced obviously, which devices The thing is gonna work with just yet. But we the goal, ultimately is to provide choice to the diabetes community.

Scott Benner 17:50
Over the next few weeks dancing for diabetes, we'll be introducing you to 34 incredible and inspiring young individuals on their Instagram account, please go to dancing the number four diabetes.com right now check out what they're doing. And then scroll to the bottom and click on their link for Instagram. And don't forget if you're local in the Orlando area dancing for diabetes is holding their 18th annual extravaganza at the Bob Carr theater. Let me ask you a question that you may or may not have a thought on and and this would require you to speak for someone else but maybe maybe you can have maybe you can Why did it take tide pool to exist? why don't why didn't accompany have like dinner? I mean, like why wouldn't they do this already? That was the thing that I always like, you know, any of the devices I've seen everybody's pumped. And like you said the information you get back is nice, but it doesn't. It doesn't speak to you know, another device, it doesn't do overlays, there's all kinds of problems and I use clarity every you know, not every day, but I use clarity a lot and it does fine for me. But to your point it doesn't I can't see what I'm doing with insulin and I can only see what the blood sugar is doing. I just as you're as you're describing with high blood, as I'm looking here on this website, what I can think is like why didn't one of them do this? Like why? why did why do you make any sense? It doesn't make sense that you needed to do you know what I mean?

Christopher Snider 19:11
Yeah, um, as I was actually in a roundabout way, talking with our CEO about this a couple of days ago, just sort of like why him Why then why now and a little a little about context. I mean, Howard was VP of software at TiVo and Amazon like, he's a big geek. It's it's kind of remarkable. Like, how, how much of a nerd he actually is about all this stuff. And it just like, you know, fate is not a word that we want to throw around too often. But it just, it was the right place right time for for him whenever his daughter was diagnosed, and she was on a pump and CGM. And it's like this technology is great, but why can't I see all this data? Why can't I make any sense of it? Why isn't it working? And then, you know, being in Palo Alto, he has a different level of access and opportunity and he found some very smart people who had a similar idea. And then together they became the foundation of title and it's evolved and grown. And expanded into what it is today. And it's I hate for it to be a matter of right place right time. But and I in Howard even told me himself that he believed that something like this would have come along. If it weren't for him. I mean, somebody else would have had a similar thought they just happened to be him, he happened to be the right person at the right time to, to spearhead this and then take the lead on it. And then Ever since then, we've done what we can to to move the conversation forward about data access, we've been as part of like the title loop thing, like we published our meeting minutes with the FDA. So you can go to tide pool.org slash documents right now and see everything we've told the FDA about this project to date, which is a level of transparency that I quite frankly, I haven't seen anywhere else, when it comes to diabetes stuff when it comes to FDA stuff, like Howard has believed. I've known him on and off. I mean, I guess before working a title, I've known him for about four or five years. From the beginning, he's always said the FDA is not the enemy, you just have to be willing to engage with them early and often. And and that has benefited us tremendously to the point that I feel like we are regularly punching above our weight in the conversations that we're having across the healthcare industry, not just diabetes space, but across the healthcare space, because of how we're approaching data validation, our process our our quality management system, as far as the level of transparency that we're sharing with the rest of the community, anybody who wants to take a look and see what we're doing our code is open source, the Trello boards that we have for the current work that we're doing and work that we've completed are all open to the community, we know, to the extent that we can share something with with everybody we do that. And it's it's pretty remarkable to be part of that process. Whenever, whenever the like I said, like there hasn't been a lot of history supporting that sort of effort. And we'll see what happens five years from now, like that fighter window for these people is always a tenuous thing. But we'll see what happens if more companies sort of take that approach. I hope that they will. I mean, if I hope that we people see us as a standard setter for this. And in seeing this as not just a fluke or an anomaly, but as like a genuine path forward for how you can approach digital health software.

Scott Benner 21:55
My wife works in drug safety, her whole career pretty much. And she always tells me that the biggest problem that pharma companies have is that they're afraid needlessly of the FDA. Yeah. And she's like, if they would just do what you just said, She's like, everything would just and I just clicked on this, like, this is an incredible collection of everything you guys are doing, made public. But he or she would always say that if they just would just not be scared. And I think the first person I saw diabetes, not be scared, right? was when Sanofi opened up, they're coming, they're kind of community arm and they they were reaching out to people with diabetes more, they were the first person who would, to me just said, Well, let me let me do what we think is right here, have good intentions. And if and, and the FDA will tell us if we've gone too far, instead of instead of pulling back doing less than we think would help people, let's do what we think would help people and then and then maybe that won't be a problem. And it turned out wasn't a problem. And my wife says that all the time. She's like, if you just if you just went forward with good intentions, that's what the FDA wants, they want you to do good work for people. They don't they're not in the business of telling you. No, they're in the business of telling you do do good things for people. Yeah. And so that's, that's really spectacular. I can't tell you that that's going to lead to so much success. I mean, it definitely seems like it will to me, and it looks like it is already. Okay, so tide pool starts out, it's a way to aggregate my data together for my pump, some ice jams and all this stuff. But now the world is I don't know how much people listening really understand. But there are plenty of DIY people in the world. You know, I we've had some of them on here making their own artificial pancreas as with all pumps and algorism algorithms that they wrote themselves. And there's a lot of people sort of on the fringes of diabetes doing this work for themselves that you know, they don't want to wait for a company to do it. They're doing it for themselves. And I hear people tell me all the time, oh, we're looping now. We're looping. And I just think of that movie with Bruce Willis. And that handsome boy and then I don't know, I haven't seen that movie yet.

Unknown Speaker 24:03
Is it really good?

Scott Benner 24:04
You know what, Chris? It's worth it. You'd like it. Okay,

Christopher Snider 24:06
you would Yeah, I'm always down for a good sci fi time travel sort of paradox thing and like it's been like on my Amazon with watch lists, but I haven't actually pulled the trigger because I have no time anymore. But thanks to puppy and just barely watching any of the shows that we normally watch is a whole hassle and there's like a half hour shows. So like trying to watch out for a movie is an impossible task at this point.

Scott Benner 24:26
A couple of things that people may or may not care about one I saw you got a puppy on line. I was like that's adorable. Because I love our dogs and so wish I didn't have them some but but I was like oh Chris and his new wife are gonna have this nice house and whether that dog pees on the floor ones anyway um,

Unknown Speaker 24:47
but

Scott Benner 24:48
But no, I get what you're saying. So looper as a movie review. It falls apart a little bit at one point but not in a way that makes you sad that you watched it. Okay. So and and Bruce Willis does his halfway between his diehard fans. And halfway between his Moonrise Kingdom thing. So he's he's writing his Bruce Willis sweet spot in my opinion.

Christopher Snider 25:07
That's that's fine by me. I'm diehard three all day.

Unknown Speaker 25:09
Yeah. So

Scott Benner 25:10
and then there's that other boy with the three names whose name I can't remember right now.

Unknown Speaker 25:13
Joseph, Joseph Gordon Levitt Joseph Gordon

Scott Benner 25:15
Levitt, who's been I don't think been banned. anything I've ever seen. So, okay, so everybody go watch looper that has nothing to do with looping. You're gonna have to talk to me like I'm for for a second. What is loop? Instead of an on the pod ad right here, I'm gonna tell you a little bit about a note I got last night. It's from a person who said that they let's see. Hey, Scott, I want to thank you for the podcast making diabetes management actually seem manageable. I found the show this summer. When I was looking for details about the Omni pod products that were coming up, I found your interview with them dove into the older episodes. And of course, listened to the classic episode number 11. I honestly never looked at diabetes management that way before. But I changed my mindset completely tweaked my basal rates changed, my ratios changed my dexcom alarms started treating high blood sugars more aggressively. And here I am three months later with my a one c down from seven, one to 5.5. And then she uses an expletive here, which I like, I don't know that my once has been that low and 16 years of having diabetes. This is the great part. I'm getting married in December. Thinking about having kids before I found your podcast, I just don't know if I ever would have felt comfortable enough to try to get pregnant with my one season the seventh. Going to the doctor today and seeing that 5.5 was so exciting. And also a relief, I can do this. Thank you for giving me the confidence to do something about it. I included this story here in this ad for Omni pod because three years ago, when I had the idea to start this podcast, and not one download to show for it. I went to Omni pod I said I need you to back this idea I have to help people. And they did before there was any reason to support it. And here we are now three years later, reading a note like that, about a woman who's about to start a family and have children with the help of something she heard on a podcast, something that three years ago didn't exist, that I couldn't afford to start on my own. Something that ami pod heard about and said, Yes, I'm really gonna let you into this conversation. You think things are about money all the time in business, I told them, Look, I don't know if this is ever going to make any money. But I can tell you that I really believe that it's going to help people. And if Omnipod wants to be part of helping the community, I really would appreciate your support. And they did it based on that, before they even knew if I could ever get it, download my omnipod.com forward slash juice box, try the free no obligation demo today. Try the pump on see what you think and support the company that supports this podcast, while just trying to support you. You're gonna have to talk to me like I'm for for a second.

Christopher Snider 27:53
What is loop? Alright, so we had to take a step back, I got Well, first of all context, which is really exciting. Like there are currently nine people a tide pool that are looping or have used open APS, which for that doesn't really mean a lot. But it's just like a fun little number we can throw around. So you have cgms people know about that the Dexcom thing that does every five minutes your blood glucose value in the people have figured out ways through things like nightscout to get that data elsewhere to have that visibility elsewhere. Some very, very smart people figured out that certain old Medtronic pumps can receive commands through very specific radio frequencies translated from very specific devices to alter basal rates and to do other things that has branched off into a couple of exciting new ventures, Android APS open APS, which people might have heard and loop. Ultimately, we're talking about Dexcom data, going into some sort of algorithm based thing and then sending a command to an insulin pump to say, Hey, I'm a little low, a little less Basal please or ham a little high, a little more Basal please. or, in the case of blue, pay about the eat, give a little more insulin, let's go. People figured this out. They're very, very smart. They have shared this code, it is all open source. And in depending on the route, you want to go with it, you can go open APS, which means that you carry around this thing called an Edison board. It's like the size of a of like a post it note ish. But it is a computer in your pocket that handles all the math to adjust your your insulin dosing based off your CGM data and the settings you were put into it as well. The other path is loop. And that is an iPhone app that you have to build yourself. So you have to have an apple developer license, which is apparently you can just sign up for it's like 99 bucks a year or whatever. And then there's another device called a Riley link. It's about the size of a tic tac box. And what happens is your CGM data goes to your iPhone, the phone does the algorithm stuff and then it sends something to the Reilly link and the Reilly link says hey Medtronic pump do this. And so the right link is basically being a translator for that radio frequency to to adjust insulin dosing from that, again, that is all open source. But as you can imagine, there's effort required to make this happen. You'd have to find a very specific old Medtronic pump and as the months and years have gone on, finding those has become more difficult and more expensive. There is time involved in quality In the code and executing the code, and making all that happen, making adjustments, there is some sort of tech savvy required. The community itself has been tremendous at helping people along and providing guidance and assistance and pointing out things whenever people are looking for help. But you still have to do it on your own to DIY system, do it yourself. Also, there's money involved, you have to buy the Edison board, you have to buy the Reilly link, you have to buy the apple developer license there, there's all this investment up front, before you can get this closed loop system, that you're managing yourself. And all of a sudden, you know, as our VP of product of Biz Dev, Brandon arbeiter, he controls his insulin pump from his Apple Watch, which is both wild and crazy. But he's doing all that and it's really, really cool type of loop. I did my own Monday, typos has, we have announced to the world that we are going to take the loop project and turn it into our own thing, and make it an FDA approved application to work with commercially available pumps and CG items. So we're talking about stuff that that insurance will cover that your doctor will write a prescription for, and they will feel comfortable writing a prescription for because it is FDA approved. And we will be supporting that'd be so DIY loop as we're calling it just draw a distinction will still be a thing will still move forward and will still receive updates and things like that that's not going anywhere. But typo loop, the branch of the project that we maintain and monitor, that's going to be our thing, and it's going to work with it and warranty stuff. So you don't have to go to the gray market. For an old Medtronic pump. You don't have to buy additional hardware, beyond the phone that you already need to make all this stuff work. But the future that we envision as you go, you talk to your doctor get a prescription. And then I'm not sure the exact process but also you're gonna get a prescription to go to the App Store and download this thing on your phone without having to do anything else. And then when you boot it up, you say I've got this pump. I've got the CGM. Here are my settings, loot me, I don't know if that actually is going to be the command. But we're just gonna have some fun right now. But ultimately, like I said, Our vision is that we will be supporting multiple pumps in CGM will be compatible with the software. So you pull up, you got your pump, you got your CGM, you configure your system, you're good to go. And then you can control your diabetes from your phone. And it helps me that'll automate stuff in the background. So it'll adjust your basal rates as your blood sugar's high and low. You'll be able to bolster stuff, you can set different targets whenever you are exercising and things like that. All this will be automated. And in theory, and actually not in theory, because I've actually I because I work with these people. And the system is incredible. I'm quite jealous me and my tandem like, we want to talk about basal IQ for a little bit. Hopefully, the pot sponsors won't get mad, but like, I'm rocking baseline IQ, I love this thing. But to see what happens whenever you have control on the highs and the lows, that peace of mind that has been provided, as I was talking with my co workers about it a few months ago, he's like, he doesn't think of it as diabetes nearly as much as he ever did and improves his quality of life and improves this work and improves his personal life for the relationship with his family. Do you spend more time with his kids all the time that you're spent dealing with diabetes, you still care about he so you know, keep a portion of your brain on it. But there's a huge chunk of that you get back. And then like at this point, like just with basal IQ only managing the lows, like I don't know what to do with that extra portion of my brain now,

it's not a lot. It's enough that I'm like, I'm not thinking about my diabetes right now. No, I

Scott Benner 33:06
we spoke about it recently on the podcast because I was like, This is fantastic. But it really is just the low side it's more of the it's more of the you know, the the don't die alarm. It's not the it's not the whole process but the whole process is so who do you you know someone who's you know a number of people that loop so you're telling me that that I if my blood sugar is thinking about getting low in the future and there's no way I can possibly know that the the loop understands that and it cuts my bazel back so that that hopefully low doesn't happen.

Christopher Snider 33:39
Yes, or it's not as severe and not

Unknown Speaker 33:41
as fair

Scott Benner 33:42
or and if I start getting crazy low and something really is going to go wrong. It just shuts my insulin down so that whatever is happening doesn't get worse. And does it come back it comes back on on its own I don't have to tell it Hey, you know you you sent my bazel down but now put it back on I really there's not a lot to do.

Christopher Snider 33:59
It's relying on that CGM data so as long as that's flowing then you're good to go. So a little bit like I get I get I'm on a T slim I have not looped before. So I can't speak to the specific current loop experience. But the thing is as often as is as automated as it can be, and it is remarkable to see it in action. Okay,

Scott Benner 34:16
so this so loop is no different than it well no different in a basic way than what any of your pump companies are off working on right now on the pods working on their, their algorithm, that's their loop for the lack of a better term. And so and so as I'm assuming tandems gonna try to go from base like you do a full system. I'm assuming they

Christopher Snider 34:35
are. It's called control IQ. I believe they're supposed to be working on. Last I heard from one of their reps at the conference I was at they said something about summer 2019. But that's like, super unofficial I have no idea. I'm,

Scott Benner 34:48
I know I know. Omnipod says like, like the end of 2019 or 2020 or something like that. And at the same time, it's interesting it really is now because because look what Luke did for everybody because I'm now Thinking that, that all these companies who have these target dates way off in the future? Why is that different from you? Like, how are you going to get it? Like, do you imagine yours is going to have FDA approval before these other companies?

Christopher Snider 35:15
We have an aggressive timeline in mind internally that I cannot share with you. I think it is a great question, though, and there is some something of a more substantial answer to it. And part of the reason is that DIY loop already exists. And it is a true is a fantastic sort of foundation for what type of loop will become. And there are a couple of pieces that are gonna be coming into play with this one is an observational study that's gonna be taking place, the Jade center metaphor is going to be looking at current loop users to sort of measure like not just the data, but also do some quality of life stuff to just sort of see how it's going. because there hasn't actually been a substantial clinical trial or clinical study, or, in this case, an observational study done on a DIY system before. And as you will see, in our meeting minutes that we published on type.org, slash documents, we're going to use that data to sort of prove the safety and efficacy of the system. And that's part of the thing that we're gonna be using to submit Hyperloop for FDA approval. And also along the way, there's this whole other thing that we didn't even talk about called the FDA, the digital health software pre certification pilot program. Basically, what that means that the FDA realizes that their process for approving digital software is outdated and ancient, and they would need help and they needed help figuring out what the new process should be a bunch of companies applied to be part of that process. typo was one of the nine companies selected along the likes of Apple, and Google barely and Fitbit and Johnson and Johnson and pair therapeutics and two others, I believe, so we are helping to make an FDA policy with Apple and Google and a bunch of other folks to hopefully provide what we are more simply describing as like a TSA precheck. So it's sort of like a fast lane for approval for digital software so that this stuff can get to market sooner. And part like we're actually going through an FDA audit right now to sort of prepare ourselves down the road for our eventual submission of typo loop. So like, there's a tremendous Foundation, from the code side of things, there's going to be clinical study data we're gonna able to use for our submission. And then with this FDA pre cert thing happening, about two different pieces are at play here, that should help us get this thing out in a much more reasonable timeline than I think people may ever imagined. So cool.

Scott Benner 37:23
No, I mean, no, can you can I suppose for a second, is there a world where you can eventually talk pump complex? So let me ask this question before that. So we the way it's set up right now, you described that my phone has an app that then talks to a little board, I have to hold a key I carry around with me to talk to this Medtronic pump. So how do you get past that say, say you guys sign an agreement with Omni pod? Does Omni pod have to put that board in their pump? How does from the How does it get from the app to the pump, when it's not that old Medtronic that somebody found a radio frequency though.

Christopher Snider 38:00
So there's a whole other FDA, there's a lot of FDA talk here, but it's all really exciting because the FDA wants all this stuff to happen, which I think is the most encouraging thing. So Dexcom recently received a classification for their g six called CGM leave if things are interoperable? I think so I, but basically, it means that it can work me it has been approved to work with other health software with other health applications and things like that, which is why tendons basal IQ got approval with dexcom g six, because it was g six was already certified by the FDA to do this stuff. and Canada said, Hey, we're gonna use g six to do something cool. And FDA said, awesome, go have fun with it. So that's the CGM side of things. On the AI pump side of things. There is yet to be an AI pump out in market yet, but the vision is that an AI pump will be able to receive data from an AI CGM, or to interact properly with CGM to do cool stuff. So you have the AI pump, you have the CGM, and then type a loop would be the AI algorithm or the AI controller, and all these interoperable pieces. Again, you get to pick your pieces of the puzzle. Right now it's just bringing the AI algorithm portion, we just be typing a loop. But I mean, hopefully down the road, we you have multiple CGM to pick from multiple pumps to pick from provided insurance covers and blah, blah, blah. But you get to pick the pump that your kid is most comfortable with. And then you just boot up Hyperloop, and you're good to go. And all that stuff will just with it. So I mean, if ami pod were a company that supports that, then that's great to go. And this is all going to happen. Because the different companies that that we are talking with that we haven't actually had a chance to share who we're talking with and what software is compatible yet. But there's something happening over Bluetooth, and they're all going to be compatible with the IPAM protocol. And once they're all on board, and we signed the agreements to make that happen, then they're sharing their data protocol communication agreement or their data communication protocols with us, so that our software can able to can be able to communicate with their devices. Actually,

Scott Benner 39:48
I can't believe I understood but I really did. So as you were talking I was incredibly impressed with myself because I would

Unknown Speaker 39:55
just fall.

Christopher Snider 39:56
For anything. This is good because I haven't had a lot of chance to talk about Too often so I feel okay that I'm being able to hopefully describe this in a reasonable fashion without getting into the weeds about it.

Scott Benner 40:05
No, absolutely, I'm thinking to boil it down is that Dexcom has added something to G six that allows it to make that communication with pumps that are that are set up to handle the communication. And then I extrapolate a little bit of my brain that I think about the companies who already have an agreement with Dexcom are moving forward, I use on the pod because I know it, I know they're developing their horizon, artificial pancreas system with the Dexcom g six. So it makes sense that they that would be for instance, one of the companies you'd be able to, to talk to, and and tandem the same way, if tandems already got their base like you and they're working on the other IQ system, then it makes sense that tide pool would work well with them and anyone else who has this agreement. So I see I do understand, and it takes away their need for me to carry around a small circuit board and a tic tac box. That really was the sticking point for me, in case you're wondering. Actually, it's funny, I mean, the, you know, in my mind, the real sticking point would have been going to a two pump I, when I heard that I stopped. I was like, Okay, I don't want to do that. But, but let me understand the rest of it. And then as I was like, if I did want to go with this to pump, then what would I have to do and then I like you were talking about earlier like, and I'd have to become a developer and it gets beyond my depth. And I've even had people reach out and say we could set it up for you. And I thought, well, that's great. Except that, you know, when my Wi Fi stops working, I like that I know how to get it working again, like I don't want my daughter to be using an insulin pump system that is dry through some lovely person in Montana who set it up for me who I don't want to have to call two in the morning if it doesn't work. And so in plus, I'm in the very, I guess I'm in the good position of, you know, my daughter's agency and her blood sugar stability is all very well regulated right now, just with just with what we're doing. So I didn't feel a pressure. But that didn't stop me from thinking about the other people who may be listened to this podcast and go, it's great that you're doing that I can't figure it out. Right. And I wish I had something else to do I talk all the time about I think the end of this podcast ends up being when looping and artificial pancreas becomes something that everyone can afford, then I don't see a need for this podcast anymore. I'll do a final six months, make sure everybody understands their artificial pancreas, and then I'm riding off into the sunset. But you know, but prior to that, there's there's more people than just me who can afford to get my daughter and in some competent CGM, and has the time to sit around and think about it, right. And so I try to think about all the levels of people living with Type One Diabetes, their access to health care, their access to technology, their ability to understand it, their ability to implement it, those are those are, you know, there are many, many levels of people in all varying situations like that, I am excited for the day when everybody gets to have a piece of this, you know, in a in a in a meaningful way that leaves you not walking around constantly scared of being low, or not looking at a meal and thinking, I don't know how to handle this, you know, so I'm just not going to eat or I'm not going to eat that. Like That to me is. That's that's the next level that I can imagine. I'm sure that I'm sure there's more past that. But I'm gonna be an old man by then Chris, I don't know, I'm gonna care by then what I think.

Christopher Snider 43:20
But I'm glad I can make you a believer is a nice,

Scott Benner 43:22
dude, you I mean, it's it's not that I didn't be clear, it's not that I didn't see the value in it before. It's just there were too many hurdles. And what I'm here, what I've been waiting for is for the companies to take the hurdles away. But what I'm,

Christopher Snider 43:34
but that's what we're here for you, I believe in the type of mission. Our goal here is to make data accessible, meaningful and actionable. We already talked about the accessible and meaningful part with the access regardless of the device and meaning, because it'll look nice and pretty on type of software. Now we're talking about action, but we're gonna put all this data to good use for you because it is your data, but also, you know, we get all these things happening and you start you start that type of loop process. And hopefully, you know, through that action, life gets a little bit easier, you know, in some marginal fashion, like it's, we're talking before we start recording, like all things considered, life is pretty good for me. But I also recognize that privilege and my ability to save that but you know, diabetes is definitely absolutely part of that equation when it comes to how am I doing and if it just like I said, Just seeing what basal IQ was done for me and my and how I feel about my diabetes and how I balance in turn, improve my life. Adding in more pieces to that control process, be it control IQ or Omni pod horizon or typo loop or whatever open APS continues to become like, all these different options are part of that process to try and make life a little bit easier. And diabetes is gonna go away anytime soon. Like I'm not I'm not sure how I really feel about like a proper biological cure, like give me this pill and all sudden I'm good to go. If we can improve the technology, while also continuing to have conversations about affordability for insulin and things like that, like those conversations aren't going to stop anytime soon. And type was absolutely going to be part of that. Anything else we can do to contribute to that in a positive fashion, it's super exciting to share that news with the world.

Scott Benner 45:08
I found these 10 phrases that they say make hypnosis more effective, I'm going to use them right now over the next 30 seconds, just pretend you've gone to dancing the number for diabetes.com. And the more time you spend there, the happier you feel, every time you go back, that happiness swells. This is what it must be like to be in heaven. Suppose you listen to me, and you remember to go to dancing for diabetes.com. Imagine what it would be like, when you get there, you'll be full of warmth and happiness, and find yourself realizing that you've done the right thing. So whether it's sooner or later, you're going to go to dancing for diabetes.com. Look into my eyes, you're getting sleepy. As you're talking, what I realized is this is you know, we're in October already in 2018. So this whole next year, you know, this whole next year is going to be just a run up to this explosion that's going to happen. You know, throughout all these tech companies wrapped around diabetes, like this is going to be the most exciting 12 months of since my daughter's had type one, and we're up on a dozen years now. So it's starting to feel it's starting to feel like a long time, you

Christopher Snider 46:25
know, and you throw in beta bionics and Bigfoot, like there's a lot happening. And it's, you know, him with all the caveats of access, and affordability and insulin pricing, all that other stuff. It's still a really exciting time right now to be to be sort of looped in on this conversation around where this technology can go and hopefully have you know more and more choice and more, more opportunity for people to seek better control so they can get back to posting their they Juicebox Podcast, doing one of the 15 podcasts that I have, or you know, to knitting whatever you want to do go walk your dog did not worry about this stuff. Just the idea of

Scott Benner 46:59
the free time is so exciting. I like Arden's blood sugar was incredibly stable last night, so I slept, you know, I went to bed earlier than I usually do. And I slept longer than I did. And I feel better today than I have felt all week. And I can't imagine how that would be I sometimes I lay in bed and I think I don't even have it. Like Like, what about every adult that's climbing into bed right now who's like, I'm gonna leave my blood sugar high so that I don't get low, or I'm gonna try harder to keep it where I want it. But then it's and then I got low and it's just it's a sleep is supposed to be this just regenitive restful time. And for so many people who use insulin, it's not it's the opposite. It's like this fearful, scary thing. And just to make that go away is amazing. So yeah, dude, it's very, it's incredibly exciting. I'm so happy that I reached out to you and asked you to explain this to me, because yeah, I was I feel like I was right there. But I was never speaking within about any. I didn't have any real confidence when I was talking. I'm like, I would always like parse, I'd be like, I think what it is, is this, it sounds to me like it says, I'll tell you as you were talking, I realized with all these great companies that are doing this work on their different ends. Dexcom really is the center of all this, isn't it?

Unknown Speaker 48:11
Like had they kind of crazy, right? Yeah, yeah,

Scott Benner 48:13
without them, like this doesn't exist at all.

Christopher Snider 48:16
But you think about where Dexcom is right now and how the community has pushed all that forward, like you think about what nightscout did to open up access to that data and visibility. And then all of a sudden, Dexcom share became a much more viable thing. And then, you know, the Apple Watch and all this other stuff, like, you know, I mean, the community absolutely deserves credit for moving all of this forward. And you think about I mean, like I said, like the open APS and DIY loop, like this community is driving the conversation. And to the point that we hired peach while the person who designed the Riley link and Katie de Simone, the person who created loop docs.org, the fantastic documentation site for people that are looking to get started with loop. We hired those two people that are working at type one full time to work on loop and loop docks, and also how about and also work on typo loop. So I mean, like you said to me, like it's like they were doing the stuff part time overnight, like they had they had full time jobs. But then there were also doing this loop stuff. And now because of everything that they've done in the community has done to move this conversation forward to put people in a position to make this happen. We can make this their full time job, their dedication to commit to the community has resulted in a tremendous opportunity, not just for them, but also for them, but for all of us. And it's from that from that tireless effort. That is it's just it's so remarkable.

Unknown Speaker 49:29
It's just it's crazy

Scott Benner 49:29
to think that the efforts of just random people scattered all over the globe, that that foisted a company on its shoulders really moved by the way Dexcom I'm gonna charge more for the ads. Now I didn't realize how valuable this was. And it just it No but seriously, it took this great idea and it helped move them forward. Not that they're not a great company and they're not doing good work there. The way they deal with the FDA is is revolutionary, to be perfectly honest with you like that some of the stuff that they've gotten through so quickly was mind boggling. A couple years ago how quickly they jumped from g4 to share from share to font like it was really something, you know, but but just to see that move forward. And for that to be that data, again, it's the data, the data is the hub, the data, helps the pumps do more the data helps you do less the data is it's everything, the experience and the understanding of how that insulin works, is the whole thing. That's fascinating. Well, it really is, and congratulations to everybody, anybody who's listening, who had any part of just, you know, sharing their experience or pushing a company, because I'm telling you, I found myself saying this a lot recently. But if you go back even to like, when you and I met, you know, a number of years ago, it used to just be exciting if a meter came out, like Oh, look at the meter, and everybody's like, Whoa, you know, like, like, that was the extent of like, the excitement in the diabetes world. You know, maybe this pump company will refresh this pump in a decade if we're lucky. Like, that's how it used to feel. And now I feel like I might wake up every day and hear about some amazing accomplishment, some giant leap forward. And it's a great time to it's a great time to have type one diabetes, that's a T shirt. Yeah,

Christopher Snider 51:09
it kind of is. But also Yeah, you may wake up tomorrow and find out which you know, pumps in CGM will actually be properly compatible for typo loop and that's what's coming tomorrow. But you know, this thing is happening and it's gonna happen. And because I mean, I, for anybody who's been following typo bait, people should know, we like to move quickly. And I can leave it with that sort of generous and probably overly aggressive teas

Scott Benner 51:32
like that. I take that so when you have anything else to say you feel free to reach back out. Chris as as we get ready to say goodbye Chris has alluded to he has a podcast of his own that you should be listening to first you want to tell people

Christopher Snider 51:47
and I got three one of them is kind of collecting dust. The other one just talking is the longer running one which is includes an interview with you from like, probably four years ago, whenever you met one Miss Katie Couric just talking podcast.com mostly talking with patient advocates a lot of people with diabetes and then started to branch out to the Legal Health Network to talk with other people, including somebody who has hyperhidrosis excessive sweating, which is the whole thing. And there's there's a lot to unpack, there was a really remarkable conversation. The other one that I have is called mark all that apply. It's a conversation about race between multiracial siblings, my younger sister, and I talk about race related topics. As you can imagine, there's a lot to get into there. But also, it's a lot of fun, because we view our blackness differently, which creates a lot of interesting conversation, but also she's pursuing her PhD and some something in the realm of multi racial studies and culture. So I personally believe as her big brother that doing this podcast will help her her thesis defense down the road, which is where a lot of fun play out. So that means that that is the personal life. And then of course, I pulled out dog. It's food, folks, go check it out.

Scott Benner 52:51
And there'll be Scott. Yeah, I Well, first of all, I will. And secondly, links in the show notes for all everything Chris just talked about. And I can't thank you enough for doing this. Can we throw this together very quickly. As soon as the as soon I think pretty much hours after I saw what happened. I reached out to Chris and I was like, Hey, I really want you to come on the podcast. One last thing. Can

Christopher Snider 53:11
you tell your son, tell your son that he's got a great crow hop still. We talked about this many, many years ago when you're on the podcast about how I love it. Good crow hopper. And you mentioned how fluid his motion is from the outfield. And I've seen some videos you've been posting really isn't that you got yourself a winner over there.

Scott Benner 53:26
I'll tell you what he's poor kid gets to college about six weeks ago. Now. As soon as he gets there, he's there for four days, he gets sick. And it's this horrible head cold that moves into his chest. And he's just he's so beat up. But baseball started for the fall. And I was like, you gotta you have to rest and he's such a type a kid. He won't not go to class. He won't not do his homework. He won't not go play baseball. There's nothing he won't give anything up to feel better. So he's been feeling pretty beat up but not stopping. And he told me he's like, it's I'm not hitting the way I want. He's like, I just I can't quite get rested. I'm not focused. He's like, I just want to feel better, you know? And I said, Okay, that's great. You know, you will Don't worry. And then a couple weeks into it. He said, Well, we have a scrimmage. You know, it's kind of a whole day the parents come if you want to come so I show up and my wife's there and my daughter's there and we're all watching Cole and he runs out into the outfield and the first ball hit to him. Chris was about a I might have to say roughly 280 feet from home plate. There was one out with a man on third called caught the ball and he promptly threw the kid out trying to run home coming

Christopher Snider 54:32
from third. That makes me so happy.

Scott Benner 54:35
I swear to you, I couldn't even make a noise. Thank you, Chris for coming on the show. Don't forget to go to tide pool.org get your data so much together from your CGM from your pump, make it go together squishy so you can see it and what it's doing. You understand and some goes here. This is what happened next. This is the information you need to make better decisions. Thank you dancing for Diabetes. Thank you Omni pod. Thank you Dexcom for sponsoring the Juicebox Podcast. Go to my omnipod.com Ford slash juice box, go to dexcom.com Ford slash juice box go to dancing the number four diabetes.com there are links to all of this at Juicebox Podcast comm or in the player that you're listening to right now on your phone, Instagram users check out my Omni pod decks calm and dancing for diabetes. They're all on Instagram. Now go listen to some old episodes. And I'll be back next week. Come on, tell a friend about the podcast download Episode 11. You heard her talking about it or Episode 53 or 65 or 92 or 114 137? What about Episode 617 44? Sick? Look how many there are. There's like 190. I could list all the numbers but I mean, you know all the numbers, right? It's 123 and then it gets to 10. Then it starts building then it's like going back to one then so it's 10 then 11 which 10 is really just 10 plus one and then 12 which is 10 plus two and then 10 plus accounting is actually very simple.

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Scott Benner 10/9/18 Scott Benner 10/9/18

#188 Diabetes Burnout

Diabetes Burnout…

Maria has experienced burnout multiple times in her almost 30 years of living with type 1 diabetes. Today she is a new mother and on the podcast to share how she weathered the journey.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends welcome to Episode 188 of the Juicebox Podcast. Today's episode is sponsored by Dexcom Omni pod and dancing for diabetes. Later today when you decide, hey, I am going to go find out a little bit more about the sponsors, the Juicebox Podcast, the good people who helped bring me the podcast that I love so much that is free to me. I don't pay anything for it. It's just it there. And I mean, someone's paying for that Dexcom Omni pod dancing for diabetes. So check them out. And when you check them out, please use the links that I provide because then they know you came from here, the Juicebox Podcast. You see, it's very Circle of Life fish. Today's episode is spectacular. Do not take my word for it, though. Keep listening. We're going to be talking with Maria about burnout. Now, Maria was diagnosed at a young age, and has had Type One Diabetes for quite some time. And she's experienced burnout at many different junctures as junctures or junctions, jump, hold on one second. Yeah, I looked it up junctures is right. junctures a particular point in events or time, so I was 100%. Correct. And then I doubted myself, which now I feel bad about. But anyway, Maria has experienced burnout at a number of different junctures in her life, and she's going to talk about all of them. And you know what, this is amazing. During the episode, I find out I didn't know this. Maria was pregnant while we were recording this, she was 12 weeks pregnant. And guess what? She's had her baby. And you have to listen all the way to the end to find out how big it was and what its name is. And if it's a boy or a girl, today, Fang. Just listen to the end, what are you doing, I put a lot of work into this. Please never forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And to always consult a physician before making any changes to your health care plan. Because this is a podcast, I am not a doctor, and I mean, my God, be responsible.

Maria 1:59
Hi, I'm Maria, and I am 33 years old, and I live outside of just outside of Chicago.

Scott Benner 2:09
How old? were you when you were diagnosed?

Maria 2:11
I was four. So I'm coming up in April, on 29 years.

Scott Benner 2:17
Perfect. And what can I say? I say perfect. Because for what we're going to talk about today, you have length of service, and you and you have experienced as an adult. So I think what you're gonna say is gonna be it's gonna cover a lot of bases, which I can come I'm very excited about.

Unknown Speaker 2:34
I hope so. Yeah.

Scott Benner 2:37
Let's tell people a little bit what happened. So Maria, sent me a note. Do you listen to the podcast? I do? Yes. So you sent me a note. And you were like, you have an episode about burnout. And I said, I don't. But I know how to fix that. If you're experiencing burnout. Which, yeah, I'll put poor Murray on the podcast and talk about our burnout.

Maria 2:55
It's the thing I think a lot of people, you know, experience at some point or multiple points for some of us. But I just thought it was a good topic. And I was I really enjoy the podcast so much. I was like, if he's done a show about this, I should reach out. Because I probably started listening maybe about a year ago. So I knew that there was some archives that I hadn't, you know, hadn't heard yet.

Scott Benner 3:20
Well, we'd like to encourage people to go back and listen to all episodes, man. I don't know how many people listening realize how many people you are listening to got on the show by calling by by sending a text or a message through Facebook or something and saying, hey, do you have something about MDI, do something about burnout? And I'm like, No, but do you? What do you know about it? And, and then it's amazing because sometimes, knowing something about the topic is really valuable for people, but also not knowing and then talking through what you don't know, ends up being just as valuable. So I really appreciate you taking the time and lending yourself to this. So let me let me ask you the first question diagnosed at four. And you're 33 Mm hmm. 29 years ago, you said that's a long time. I By the way, found myself jealous that you're 33 which now I guess means I'm in the latter part of I 40 sounds like three Yeah,

Unknown Speaker 4:21
I pay for that.

Scott Benner 4:26
What do you remember about being diagnosed at four?

Maria 4:28
I'm not much I was you know, in preschool and my teachers were obviously noticing that I cuz it was a pretty like, Good Kid, good student. And then I had a pretty serious like attitude swings, and they weren't really sure where that was coming from. Because I felt horrible. And then at home, you know, all the classic stuff I think I did was a little bit of weight and I'm drinking constantly going to the bathroom constant Lately, like I actually remember getting up in the middle of the night and going to the fridge. And I opened like a, probably a thing of like orange juice or whatever you keep in the house when you have, you know, four year old kid. And just taking the whole gallon out and trying to drink from the gallon, but I was so small that it just it spilled everywhere. Yeah, in the middle of the night, so

Scott Benner 5:23
Well, now, this was a story about diabetes, that would just be an adorable sight. Right? I

Unknown Speaker 5:29
know. And then you look back, you're like, Oh, that's sad.

Scott Benner 5:31
child was dying. And it's all context and the music you play behind it. Really? So?

Maria 5:40
Yeah, but my mom is, is still a nurse and was at that time as well. Um, she knew that something was was up. Um, you know, we went to the family doctor. And I grew up outside of just outside of St. Louis. So the family doctor on the Illinois side was like, yeah, you know, I really think this might be type one. And we were lucky enough in St. Louis to have there's two great children's hospitals. So we went right over there and had, you know, got diagnosed had the week long stay. And, you know, diabetes boot camp that new parents go through, my parents did that and, you know, on your way figure, figure it out.

Scott Benner 6:25
While being diet you've been diagnosed before and having experienced burnout, and I think you've experienced it more than once, right? It's come and gone. Yeah. Right. So you kind of are taking away a tiny bit of my hope, which was, my daughter was diagnosed early that she'll never really remember life without diabetes. And that might help her. I think it does help in some ways. But can you talk about that, from your perspective? The big dancing for diabetes show is coming quickly on November 10. Orlando peeps, have you got your tickets yet? Everyone else? Have you checked it out? Dancing for diabetes.com? That's dancing the number four diabetes.com. But can you talk about that, from your perspective? Yeah,

Maria 7:06
absolutely. Um, so and, you know, I do know, people, it's gone both ways where they've always had it. And so you know, in a sense, they don't know any differently. folks who are diagnosed where they have to totally change their life and their habits. Um, and it may be a little bit personality based, too. But, you know, for me, I think, my The first time I really started to experience burnout was really that transitional age between like 18 and 25. I think that's a, I think it's a hard time for, you know, people in general, you're trying to figure out who you are. In my case, I was going away from home to college. And my mom had been, you know, she's a nurse, so she helped take care of everything, which was really great. And I, you know, I gave my own shots, but I just, it wasn't an ever present thing in my mind when I was a teenager. Um, and I was on a pump, actually, in high school, and I went off of it, and probably my junior year in high school, because it was getting in my way, I had a tube to pump and I didn't like it. Um, so went off to college, with MDI, and then in between trying to figure out life away from home, and, you know, who I who I was and who I wanted to be. You know, it's kind of a partier. So, going out all the time. And I just didn't, I didn't feel like I had room for diabetes in my life. Yeah. And it was a lot easier to just not acknowledge it, right. Um,

Scott Benner 8:46
but it doesn't, he doesn't really let you do that, right? No,

Maria 8:50
no, it totally doesn't. But you, you think that you think that your best thing is, you know, you're, you think you're invincible, because you're 18 or whatever. or in any stage of life, you just, it's the whole thing that you've talked about before, where there's immediate consequences if you have tight control, and you're dealing with lows. And those consequences just seem far away when, excuse me, when it's highs, you know, it's kind of like student loans, like Yeah, and I know I've got them someday I'll have to deal with that. But they don't seem real to you at the moment. Sure. Um, which I have both diabetes and student loans. So I can totally good analogy, but it's something that just it was so much easier for me to focus on the things that I wanted to focus on and, and to let diabetes run in the background but not be a big part of my everyday life. You know, so that was really like college. I just, I was kind of in the attitude like, I don't have time for this. It's going to be fine. Whatever. And then later in my 20s,

Scott Benner 10:02
ask one question there when you were doing that, and you were saying, when you were saying, you know, I don't have time for this, it's going to be fine. Did you? Did you consciously think I'll catch back up? Or did you think this isn't really a problem? Or did you know it was a problem? You just thought it wouldn't be if because it's only gonna be a couple of years? Like, what was the rationale? You used to have that thought? Um,

Unknown Speaker 10:24
I don't.

Scott Benner 10:26
I mean, I knew when I remember.

Maria 10:28
No, I knew it was bad what I was doing, but I didn't, I didn't consciously think about like, Okay, well, when this happens, I'll be in better control. Like, I really did not think about that. Um, you know, the lows, really scared my head really. Just, I was terrified of them. Because I had had, I'm a person who has seizures if my blood sugar gets too low, and I'm a super heavy sleeper. So I that had happened to me a few times before college. And then it happened, you know, happen a couple times in college too. But for me, like, diabetes is so invisible to other people, if they don't know that you have it, you know, you look totally like a normal person. So I could run around, you know, I was active. I was a dancer in college, and I had a major in a minor, I took all these credit hours and lots of friends, I did had all this stuff going on. And nobody knew that I was kind of choosing to hurt myself in that way. Nobody knew anything was wrong with me. And that's how I liked it at that time.

Scott Benner 11:43
Did you hide it? Like purposely?

Maria 11:46
So I didn't really, you know, I wouldn't say I was checking my blood sugar a lot. But I was wearing my insulin pump. I did end up going back on one, I think maybe my junior year of college. And I gave shots. You know, before that, I would, I would give shots, but I didn't actively hide it. But it wasn't something that I talked about a lot. Gotcha.

Scott Benner 12:11
Sure. Did you ever meet? No.

Maria 12:14
Um, my roommate didn't know. Yes. Actually, all my roommates did no. But again, it was kind of like I mentioned it, you know, a couple times, it just wasn't something that either of us were thinking about constantly. But

Unknown Speaker 12:28
right now.

Scott Benner 12:30
I'm assuming like boys and drinking and maybe going to class stuff like that.

Unknown Speaker 12:37
Normal college kids.

Maria 12:39
I think that was part of it, too. Like, I just, I just wanted to be normal. And that was the closest way that I could come up with to, to be a normal person.

Scott Benner 12:51
So breaking your life down into little bits, right, like going back to this this time first? With your, I don't know, with the with the with the you know, the benefit of hindsight at this point. Mm hmm. How could you have entered college and balanced taking care of your diabetes and being you know, a quote unquote normal person? Would it have been something that existed that you now say you could have had it? Would it be if you could fast forward into I don't know, like, now when what kind of gear to use now to have upon now? I do. I have the Omni pod and I'm using Dexcom. And I've been on both of those for about two years. Okay, so if you had those things going to college Do you think it would have changed? Do you think it was it's time and experience and perspective you need to like what would you have needed back then to kind of seamlessly go to college, have friends dance, get decent grades, go out and drink Take care of yourself?

Maria 13:47
I mean, for me, it was it's really it's all been an attitude change. So it's, it's feeling that sense of like empowerment and control that I didn't have back then I kind of had the attitude back then like, no matter what I do, it's wrong. I just can't figure this out and I feel kind of helpless. So it takes a lot of energy to keep trying and not getting the results that I want not to say that I tried super hard, but when I did it, it was just it was defeating to always like have my blood sugar be out of control or feel badly.

You know, I kind of felt like I was punished when I did try to keep them in control with lows and then you know, a seizure and negative attention that I didn't want and hospital stay. It was just like why even go through this because I can not do these things and I can get by without it makes you feel better. I had a headache the other night and Advil was 26 feet away from me across two rooms. I was like I'm not going through all that. And so, and there was nothing even to step over on the way to where the Advil was, and I was still like, I'll just live with the headache. So I get what you're saying like, what?

Scott Benner 15:09
And stop me if I'm wrong, please. But back then No, no real, no tools that were working for you. And, you know, trying but not succeeding. And then nobody telling you, hey, we like how much you're trying but try this instead of that. So all this kind of effort without reward. It just, it's overwhelming at some point, like, how many times can I push into this brick wall before I realize it's not gonna fall over? I'm looking at a photograph right now of Arden from her homecoming dance Just this past weekend. Arden's a freshman in high school now, she just looks so grown up and healthy and amazing in this picture, and really pretty. And it made me think of another photograph. And it was a photograph that she took when she was four years old. Just as she was beginning to use on the pot, she did it for her children's hospital, it was for one of their brochures. And I just remember her being so adorable in that picture. And I don't know, I just started thinking about the passage of time and a decade. Since these two pictures were taken, you know, a decade had passed. And she's growing up just perfectly. And in both of these photographs is this pump this insulin pump made by Omni pod. It just really made me consider how much of Arden's health and success is tied to her ability to get insulin to keep her blood sugar in a good range. This pump has been in all these pictures for 10 years, the Omni pod has been a stable and reliable friend to my daughter and our family for a decade. It is a huge if not almost complete part of why her a one C is where it is why her blood sugars are mismatched, and why her blood sugars are manageable during school and sleep, and pretty intense physical activity when she plays a sport. I'm going to put this picture on the Facebook page for Juicebox Podcast and for Arden stays blog, you can take a look if you want. But for now, you should really consider going to my omnipod.com forward slash juice box to try one for yourself. There are links in your show notes. And on the pub. We'd love to send you a free no obligation demo pot. A decade of trusted confidence is just a click away. How many times can I push into this brick wall before I realize it's not gonna fall over?

Maria 17:34
Yeah, absolutely. And I mean, there's so many things. Now there's a lot of tools now that I'm you know, I think every diabetic who feels like they have some success and control has a multi faceted approach for why you know why they're doing well. And that certainly is my case. And I had zero of those things happening for me back. You know, at that time,

Scott Benner 18:00
I have a 10 point plan of which at the moment, I have none of the points. Do you think that was burnout? just ignoring it in college?

Maria 18:12
Um, I do because in high school, I didn't ignore it. Um, and it? You know, I like I said, I think people in that age group tend to go through something similar, even if it's not with diabetes. I mean, with some young adults, it's finances, right, you've never really had to deal with it, you go off to school, and you're like, I'm just gonna have a credit card. And you kind of have to, I'm a person who has to, unfortunately learn the hard way sometimes. You know, so I think that it happens, and this just happened to be the, you know, the hand I was dealt with type one. Um, so but that is a different type of burnout that I experienced later in my 20s.

Unknown Speaker 18:59
Um, well, I

Scott Benner 19:00
want to stop you for saying I want to I don't want to flash forward yet. So if you're willing, I want to know if you're, you don't need to do this. But if you're willing to put context to, I was paying attention to it in high school. What did that mean? For like average blood sugars? And they one say? Sure. So

Maria 19:16
when I was in high school was the early 2000s. So, I mean, I was paying attention to you know, when I was on injections, I was taking shots, whenever I ate and I'm counting carbs, checking my blood sugar. I was a cheerleader. It's like all my cheerleading friends knew like, Oh, you have to give a shot now, you know, it was just it was more of a presence part of my life. Sure. Um, it was more integrated. So I was, um, and I was very active. So of course my my mom was helping me in or my parents were helping me make sure that I could manage Lowe's if I was doing a dance thing all day or cheerleading or whatever. Um, so it just had, it was just more Incorporated,

Scott Benner 20:05
I guess. And so you your numbers were what you would have called like, I don't want to say good, but I'm looking like you were you were in a stable range that your doctors were happy with and you were happy with?

Maria 20:17
Yeah, I think I was probably my agencies were probably around, you know, in the seventh or eighth

Scott Benner 20:25
and see that, you know, it's funny, taking into account the time MDI high school, I was sitting here thinking she's gonna say, between seven and eight, yes, because that seems reasonable, you know, for that gear for that time of your life. And then do you do you did you keep up with your appointments in college?

Maria 20:45
No, No, I didn't. I became very much a, you know, I was a drug seeker for influence. Like I went to the doctor when I had to get my prescription refills. And I've cried inside of a Walgreens more times. I'd like to admit,

Scott Benner 21:04
just to get somebody to give you insulin.

Maria 21:06
Yeah, yeah. So it was not good. I did not have a steady relationship with my doctor didn't like going to the doctor. I felt terrible every time I went because my blood sugar's were out of control. You know, they'd yell at me, because they I think I've heard I heard you say this on a recent episode, but they didn't know how to motivate me. They're like, Oh, we'll just try to scare her and see if that worked. Well, is

Unknown Speaker 21:29
your legs honey? Oh, and I'm sad already.

Maria 21:35
Yeah, I'm 20. And I know everything. Yeah, honestly. That guy's an idiot. Yeah. So that that wasn't helpful. Um, but no, I and I mean, I would switch doctors, often, because I just didn't

Scott Benner 21:51
come in, get your scripts, get what you need, and then not go back. And then they get tired of that. Yeah. Okay. And I have to ask them and I don't want to throw anybody under the bus. But where was your mom on the not going to the doctor thing in college?

Maria 22:05
Um, you know, I think she was trying to do her best to ask me and you know, should always ask how are your blood sugar's how's everything going? But really try to release the reins to me, you know, she knew that she wasn't going to manage it from five hours away. And certainly we didn't have the technology that exists now. So she, she was concerned, I knew she was always concerned, I probably lied to her a little bit and said they were better than they were. Um, but yeah, they, you know, I kept her in the dark. And it was easy to do that because they were far away.

Scott Benner 22:44
Yeah. Did you do it through? I think I'm gonna know the answer here. But because of your your other answer, about By the way, so funny. A drug seeker for insulin is hilarious. And so but um, but did you do it through like deception? Or did you do it through like putting up a wall that she knew she couldn't get away with asking too much about?

Maria 23:04
It was probably a little bit of both. Um, yeah, I mean, and, you know, I wanted the main thing was, for me, you know, I was in all other areas of my life, being pretty successful. I was, you know, always on like, the Dean's list in college. I was a good student. I liked school. It was never even a question. If I was going to go to college. I always had that in my plan. Um, and so my mom was always really, you know, and my dad too, but they were always really happy with that. Yeah. Um, and if I could keep my blood sugar's up, and I'm sorry, keep my grades up. And

Unknown Speaker 23:42
also my blood sugar, and my blood sugar's down.

Maria 23:46
Um, you know, they were, they were happy with that. But yeah, you know, she just didn't have

Scott Benner 23:53
no, I understand. I was just wondering what what tools you employed to keep her at bay? Because you're 33 now, Do you have kids?

Unknown Speaker 24:01
Um,

Unknown Speaker 24:02
I don't, okay.

Maria 24:04
I am actually 12 weeks pregnant.

Unknown Speaker 24:07
Congratulations. Thank you.

Scott Benner 24:09
You're welcome. I just did an interview with ginger Vieira and Jenny Smith about their pregnancy with diabetes book. It's not up yet. But, um, but I'll give you the title of it when we're done. So, so you can answer from from a 33 year olds perspective, looking back now? Do you wish at that moment, your mom would have ignored you and just pushed harder? Or do you think you would have pushed back harder than it would have just got more contentious in that way? But like, you don't mean like, there's this i? I can only imagine my own kids right at 18. I have almost a 14 there are times they put up walls. And I don't accept that and and if it's important enough, I pushed through it, and they sort of can't stop me. Did you know what I mean? Like I don't let them hold me back and then they get mad at me. Maybe but then that goes away like, would you have preferred that happen looking back now her to just be like, man, come on, like, you know, you got to give me better answers than this. And if you can't, if you can't come through, I'm gonna drive for five damn hours out there and we're gonna get this straightened out like, would you have wanted that kind of loving parenting from her Do you think you would have?

Maria 25:20
I think that would have blown up spectacularly? I don't think I would have been receptive to that at all better

Scott Benner 25:25
than your dad or her? Or would it have mattered?

Maria 25:28
I don't think it would have mattered, you know, and I was very much like, I know that. I know, parents get it because you do it, you take care of them. But at that point, I was living with it. You know, it was a little bit to None of your business kind of kind of perspective. So. And just my, you know, my relationship with my parents is very different now than it was when I was a teenager, of

Unknown Speaker 25:57
course, but I just

Maria 25:58
don't. Yeah, I think that would have not gone well, that would have would have probably ended up in us. Not speaking for a while I would have pushed her I would have pushed her away. Definitely. Joshua,

Scott Benner 26:11
I would have taken your money away made you come home. Yeah, I would have been like, hey, guess who? Everyone that goes to college, raise their hand. And as you start to put your hand up, I'd be like, not so fast. And you're coming home? That wouldn't scare? I don't know, look, I get what you're saying. like everyone's different. Like I don't I didn't ask that question to be like, hey, there's a specific answer for how to handle this. I was just wondering, in your perspective, you want some perspective, I'll give you some perspective. My daughter's a one C, it was not good for a long time. Then I figured some things out, figured out about Pre-Bolus saying I figured out about bumping and nudging all the stuff that you hear me talking about when I'm like bold with insulin that stuff. But you ever wonder how I figured it out? You think it just came to me in the dream. I was just sleeping one day I was bowled with insulin. That is not what happened. I was paying attention, the data that was being delivered to me by Arden's continuous glucose monitor by her Dexcom. Right now, Arden, where's the Dexcom g six, it is the most advanced version that Dexcom has ever produced. It is absolutely spectacular. I'm looking at her blood sugar right now. She's at school and it was 122, we had a little bit of a high and we're in the middle of nudging it down right now. But back to what I was talking about. You do something with insulin, you see the effect, you're not blind. I mean, just get up and close your eyes and try to walk around your house, it's impossible. You're going to come out of it with a with a bloody nose and a black guy. And that's what happens with diabetes when you try to do things with your eyes closed. Dexcom opens your eyes. This device is not just an alarm that tells you when your blood sugar's low. I mean, it does that. But it's so much more. The data is everything. You know, Dexcom also supports share and follow on iPhone and Android phones. So you can see your loved ones blood sugars, no matter where they are. About what are you waiting for? dexcom.com forward slash juice box the links in your show notes the links at Juicebox podcast.com. Do it right now do it today. Do yourself a favor.

So you graduated from college. And we're pretty unaware of really anything about your diabetes. At that point. You were you weren't really going to doctors and everything and then you said you experienced burnout again in your 20s What was that? And you know, what, what what is what face does that take because I think when people when you say burnout to me, I think of it just it becomes overwhelming. You don't really feel like taking care of it as much and it's just it's cumbersome and tiring and repetitive and but I also am not in my mind in any way. A person who has ever experienced any kind of like sadness or depression in my life like I've had, you know, the same stuff that everybody else has. My parents are divorced. I live with the idea that I'm being adopted. I've had people die around me, I don't get depressed. So it's it's not my natural course. Is it your natural course or now? Or is this is this Can you describe what Bert because that that's the thing. Sometimes I feel like we talked about things like burnout, you know, burnout, but what is that? Yeah, like what did it do to you?

Maria 29:26
Yeah, so I think for me, that specific term has taken a few different it's shown his face in a few different ways. But I've never been clinically diagnosed as depressed but I have eventually and will get a story you know, sought treatment for dealing with a chronic disease, which was helpful. So early on, no, it was not, I'm sad, I'm depressed about being diabetic, it was more like adds too much and I kind of can't handle it. So I'm not going to Um, I think the the sadness and sort of depression part, which is, I don't know, maybe a little bit of my personality not not completely, but, um, that came that came later, when I started really trying again, that was really like, I just kept feeling so defeated. Every time I would try to, to manage my diabetes and fail. So yeah,

Scott Benner 30:29
so you got it back in you again, I'm gonna try again, a little more mature, a little more aware of your health. And then and then still not the right tools, not the right support and right back to the same path again. Yeah, that would have done me into a problem. Maybe Maybe that maybe the fifth time it happened, I would have been like, you know what I'm, I'm called. So okay, so go ahead, do your 20s What happened next.

Maria 30:52
So after my 20s, I moved, you know, to Chicago and had met my husband pretty young, and had a really great group of friends. So I was, I got a job right away. So it was working and, and, you know, I lived alone, so I was really, really scared of lows, that that was always the other side of it. I just didn't want to be found, you know, dead alone on my apartments

Scott Benner 31:19
are good aspirations for the very good aspirations that have Yeah, I'd like to have a little savings, maybe bump into Oprah once while I'm here and not die in my apartment by myself. Yeah,

Maria 31:28
that'd be that'd be awesome. I'm so you know, I think it was a little more, I probably felt like, okay, now I'm an adult, and now I'm going to take care of myself. But that didn't exactly it happened to be more of the same from college, into my early 20s. And then, you know, something would happen, where I'd be like, Okay, I'm going to try and get my life together. And I'd go see a new doctor, I, you know, maybe I did have, I think of severe low, like a seizure at, I don't know, maybe my mid to late 20s. Okay, I have really have to be better about this. And then I would try, and then I didn't have the, you know, the right tools or the right support in place. And it was just, I was so crushed by not being able to do that. And I think part of that also comes from, like I said, because then the rest of the areas of my life, I do have my life together pretty well in most other areas. So, you know, I'm an educated person. Why can't I figure this out? What is wrong with me that I can't make this work?

Scott Benner 32:40
So is is it's funny, because I bet you being successful in other areas. makes it worse, because you can look and say, Look, I do this, well, I do this. Well, you know, these things are all working out the way I kind of intended or at least closely enough. How is it this one thing? I'm this last about? Right? Yeah. And that's interesting. Um, oh, Jesus, I feel bad. I don't I didn't expect to feel I'm sorry. No, no, no, it's not your fault. I feel like I feel me talking to you about this part of your life. really gives me the same feeling that I think drove me to the podcast, like it was just that like idea of like, you were this person who was like, you're describing a person who was so close to like fulfillment, and just for the want of somebody saying, hey, look, this is how insulin works. And you just put it in here instead of there. And like that kind of stuff. And like those little like tips and tricks and things like that, like you were like, it just it's crushing to me to hear you that you spent that many years. That close to the answer, but still that far away from it. It's just, yeah, we don't know each other. And still, I feel like an incredible amount of like, empathy at the moment, like, like, it's, it's too much for a Friday is what I'm saying. Yeah.

Maria 34:00
I mean, I just think that if you don't, I mean, the support is huge. And having a network and having those tools. I mean, diabetes can be so isolating, and just, you know, even my, my boyfriend at the time, who now is my husband, like he was with me all the time. He kind of saw what I was doing, but he had no idea. And my friends who love me and are so supportive in every aspect of my life. I love them so much. I can't even talk about them without crying, but they, they don't get it and it's fine. They I can't You can't expect someone to understand the nuance of living within debt, managing diabetes, so you know it and then you have the isolation part. And then you have the shame part, which was huge, because I knew that it wasn't doing well. Doctors were blatantly telling me I wasn't doing well. I like couldn't I felt like I couldn't tell my you know, my parents, my family because they'd be really disappointed. Yeah. So you know, I had this whole other like shame aspect of how, you know how poorly it was going, which was even more isolating. So it was just a lot of complex feelings kind of pushed down under this like, hey, this like shiny, Happy 20 year old person who kind of looks like she's got her life together. Yeah,

Scott Benner 35:25
that you just said something you didn't know about. But this week earlier this week, I recorded an episode with a person who we basically just talked about shame. And they reached out to me, and they said, I am so full of shame about my diabetes. And we talked about it for a full hour, what I just realized is I'm going to run yours one week and hers the next week, because they're going to complement each other really well. And it's funny. In one week, I heard the word shame twice, and I didn't really hear it in 150 hours prior to that. Yeah, so I'm glad we're talking about it. Okay, so you're in Chicago, you've met the guy you're gonna marry eventually. I have one question about that. When you get serious with someone, and you're a person who's not really that open with their diabetes. Do you feel like you're hiding something from him? Does it? Does it change? Does that being private change more into I feel like I'm lying to you ever?

Maria 36:20
Um, you know, it didn't in the beginning, because what I what I told people and kind of what I believe myself is, you know, I'm type one diabetic, but it's, it's not really that big of a deal. And so I didn't feel like I was hiding anything. In the beginning, I think when I started really trying to manage it, and it was difficult. That was really like the breakthrough moment of like, you know, crying This is so hard. I don't know what I'm doing. I can't do this. I think that was the time when we really had the the tough conversations around it. And I think he probably was, you know, surprised by all of the all the things that come along with dating and loving type one diabetic,

Scott Benner 37:09
I was gonna say he must have been shocked. He must have been like, Well, I didn't see any of this. And now this is all the sudden here. You're opening up to him, which is great. And I and he didn't like he didn't excuse himself to go into the other room and never come back. So you must have been like, wow, this guy either really loves me or I'm really good at sex. One or the other. Hey, I wasn't I wasn't knocking. You could totally be good above. And so but but no, I it just because that's a real like leap. Like, it really is. It's for somebody to have like been with you for a while and been like, yeah, that she's got diabetes, but it seems really easy. And she's got it to one day, one day, you'd be like, Hey, I haven't mentioned that. It's not easy. And I don't got it. And and then and then here's, here's really how I feel that well, good for you. I mean, I've said it here a bunch of times to people like, you know, don't settle for somebody who doesn't love you like that. You know what I mean? Like, there's that's really wonderful. So I'm really happy for you that you found that. Okay, so you've now opened yourself up to him. Did that? Did that lead to your next attempt of I'm going to take better care of myself?

Maria 38:18
Yeah, I mean, my next several templates. Yeah, we, you know, that was something that we we talked about. He was always willing to, you know, help be part of that. But yeah, I think slowly, kind of talking about it more, really, I don't feel like I got into a good, really putting concentrated effort to managing my diabetes until probably my late 20s. Early. Probably, when I turned 30. I had I went to grad school, when I was, you know, 28 and 29. So I graduated right before I was 30. And at that point, I was like, Okay, I'm 30, you really do have to get your life together in all areas, including diabetes. I had been married for, you know, five years at that point. And we, when we got married, we weren't sure if we wanted to have kids. But I was like, I'm 30. Now we need to figure out what we're going to do and come up with a plan if that is the plan. You know, so I think that was the motivating factor. But I started you know, just like my husband before, we kind of had those talks. All of my friends all of my colleagues who say the same thing, she's type one, but you know, she's got it like she does such a great job taking care of herself because to them. It looks like that.

Scott Benner 39:40
Yeah, Marie, all you did, all you really did was do a really good job of making everybody think you were okay.

Maria 39:44
Absolutely. Yeah, I was amazing at it. Yeah. Um, so then I had to start, you know, correcting people actually, not, you know, not so much my close friends and things like that but being able to have those conversations You know, it helped, it just helped me not feel so alone. And I think that was huge. I felt like I had the support, um, I could be honest and have to hide what was going on. And that was really helpful

Scott Benner 40:14
for me, to, to be open with it was to kind of take away a lot of the pressures that cause the, the, I guess the sadness and the burnout to begin with. Yeah, just letting other people in. That's, you know, it's funny when you say it sounds so simple, right? Like, did it doesn't it feel like, wow, how did I not figure that out sooner? And yeah, and it's, and it's funny, because you just trip into it one way or the other. Like you said, it could be personality based, you know, I know, I know, some people who were like, I, my kid will not let anyone see their insulin pump. I spoke at something recently, and I met this person who I know listens to this podcast, and her daughter was there. And she's like, nobody gets to see your palm. And I, you know, her daughter was like, 17, I'm sure I overstep the bound, but I looked at her daughter in the face. And I have to bleep this out later. But I was like, really, you should not give anybody else thinks about your diabetes? Yeah, you know, I was like, just where the pump on your forehead if you want to, just just don't worry about them. Because Because the advice I gave her at that moment was moving forward in your life later, you know, when you're when your health is at risk, because you don't want to pull out your device and give yourself insulin in class, because you're afraid of people looking at you. So those people will all be gone. And you're going to be the one left with the the issues, you know, yeah. So you have to really and then what I said to her at the end was you have to care about yourself more than you care about what other people think. Yeah. And then it's funny, because what you found was, you know, in a slightly different vein is you needed other people to just know you for real, like, like to really like just to see what you are and to just go Okay, I get it. Like it's funny. You weren't asking anything from them, right? You didn't ask them to carry your insulin around for you? Or did make sure you're testing your budget. You didn't ask them to do something. You just you just let them see you. For real.

Unknown Speaker 42:03
I just had to be vulnerable, which is hard for me. Yeah.

Scott Benner 42:07
Well, it won't be hard for you to have that baby because you'll be Yeah, just be sitting here letting him go. I don't know why I did this. I mean, the kids delightful but oh, my god once everything. But but it's it really is interesting to see all this tie back to you. The more conversations I have, the more interesting I'm to see the different interested I am to see the way that things tie together in ways I didn't expect them to. You know, and there are really only a finite number of stories that we're all just sort of living through but just slightly differently depending on our circumstances, I guess and our personalities and perspectives. Yeah. So how much of so we talked about that it's coming gone? We've talked about probably what it you know, what, what leads into the burnout? How do you get out of dancing the number four diabetes.com go to dancing for diabetes.com? Have you not done this yet? dancing? For diabetes.com? Dancing the number four diabetes that maybe don't spell? Is that why you haven't been there? Dancing is da n c i n g four is a four it's a number that comes after three. It's between three and five, and diabetes di a BTS B et s.is a period and calm CLM dancing for diabetes.com? How do you get out of it? Is it just the siding to get out of it? Um,

Maria 43:42
I think that's certainly a part of it. We have to, you know, make a commitment. But I think surrounding you know, as we said, there's resources, there's tools, there's support. And for me the the 10 point plan, you know, was I think a big part of being able to get out of it was you know, I did seek some mental health help, because I was just struggling and so I you know, I changed doctors, that was huge for me, because the doctor I had been going to was very nice. She certainly, you know, cared what was going on with me, but the little stuff I know, you talked about this before, you know, they weren't. They weren't

connected in a digital way. So just you know, write down your blood sugars and bring them in. Okay, well, you know how that goes. Yeah.

Or I would do it I'd be like, Okay, well, this one was to 12 like I wouldn't just make so I didn't want to I was too proud to walk in there without anything but I also I wanted to be compliant but I couldn't be compliant.

Scott Benner 44:49
Were compliant, but not honest. Right, which is probably not compliant.

Maria 44:56
I know it's a waste of everyone's time.

Scott Benner 45:01
Here are the numbers I made up. Let's get going. Right?

Unknown Speaker 45:04
Do you work your magic, please?

Scott Benner 45:08
Oh my god, I'm so sorry. You just made me laugh. So, like, What a waste of everyone's time. That line just made me it just made me laugh. Like, that's such a great, um, just a management from you like

Unknown Speaker 45:23
it was so ridiculous, I should

Scott Benner 45:24
have went to the zoo. Right?

Maria 45:28
I'm glad I paid you my $30 copay to come in here and waste your time. So, you know, it just, it wasn't working for me. Again, I feel like that doctor that I was with she was she was trying really hard, but it just wasn't working. And then she went to the scare tactics. And I'm like, Okay, I gotta go somewhere else. So I ended up going, I actually worked for a health system now. So I ended up coming into my health system in which, you know, they hooked everything up, you don't have to do anything, and they could help read my numbers. But by the time I found them, I was I walked into the office, I said, My agency's terrible, I want to make it better, I'm ready to like, help do that and work towards that. But I need a lot of help. It's going to take a lot of work. Okay. Um, so that was a big part of it, too. I also found I think I started on and had never occurred to me to do this to like, look at diabetes, like message boards and not do like, the jdrf for you know, I wanted like young people who looked and talked like me. So I think I found a Reddit thread that was so brutally honest, about people experiencing burnout, having, you know, struggling to manage their diabetes. And for the first time, I was like, Oh, my God, other people go through this, too. Yeah. And that was really helpful. So from there, you know, it landed on the Facebook groups, which I think is maybe where I heard about the podcast, you know, the Dexcom and Omnipod. Group eventually. But that was a huge part of support.

Scott Benner 47:08
I think the honesty factor can't be undervalued, you know, just scrubbing things up and making them feel nice and telling you it's gonna be okay. And everything is, it's just a very Pollyanna way of approaching everything. Like you shouldn't scare the crap out of people when they're diagnosed, or when they have questions, but it would be nice, at least to let them know, you know, that your expectations should fall somewhere in this range. Not not like if this doesn't happen, you've screwed up and then run away crying, it just it's, I can't be honest. It's just, it's overwhelmingly important. You know, it's funny, you said you, you went to you found some mental health care. I just spoke with somebody this week, privately, who was the parent of a child has been recent, more recently diagnosed, and the anxiety of the of the worry of, Oh, my gosh, am I gonna do this that hurt them or, you know, that kind of thing led them to do the very same thing. And when they told me that, I was like, congratulations, like, for doing it so quickly. You know, for not just like, digging a hole and then burning yourself and digging it deeper and keeping going straight away. This person was just like, I'm gonna go talk to somebody and, and work this out. And, yeah, you just can't ignore things like that, you know?

Maria 48:21
Yeah. And it wasn't. I mean, it was certainly wasn't my grand idea they just came up with it was when I started seeing my new health team. And it really is a team of the endocrinologist the CD ease. But that was, when I said, I'm having a hard time they're like, you know, it might be worthwhile, we have somebody who specializes in dealing with chronic illness. And it might be worthwhile to go talk to them. So I did. And that was, you know, I think one of the best things I learned from that actually don't see that person any longer. But they had had a lot of anxiety. This is before I had the pod about changing my pump. I had like a Medtronic before that. And I was like, I just it like, takes forever, I have to run around and get all this stuff. And like, I just don't want to quit what I'm doing to change the site. So I just sit there like without insulin for, you know, hours or whatever. And, and she's like, you have to get the time how long that chain it takes to change a site. And she's like, do that let me know. And I was like, it takes one minute and 30 seconds.

Scott Benner 49:26
Forever.

Maria 49:28
Is that like a mental? You know, I just had all these mental barriers of like, I can't do this. I don't have time to do this. I'm not I don't know how to do this. And so she helped me it was kind of like cognitive behavioral therapy. So she said, you know, here's the thing you're worried about here are the tools that we can use to kind of deal with that and that was really helpful for me furnace.

Scott Benner 49:52
Okay, so I'm assuming that all this led into your 30s I'm gonna You know, I'm imagining, you know, Mary Tyler Moore running down the street. The wind's blowing in your hair, everything is fixed, you're on a new path. But But how much of deciding to have a baby, like whipped you together the rest of the way? Because this is something I was talking about just yesterday with Jenny while we were recording. It's funny how this all lined up. But, you know, I said to her, I'm like, how many people couldn't find a way to love and care about themselves enough to really make the leaps they needed to make. But once they decided they were going to grow a baby found the way to like, you know what I mean? Like, it's sometimes it's easier to love and care for somebody else.

Unknown Speaker 50:40
Yeah,

Scott Benner 50:41
rather than yourself. Yeah.

Maria 50:43
Yeah, that I mean, that was certainly part of it. So I think that, because I did get serious about I asked my team, you know, what would, what needs to happen if that's something that we want to do? Because we're not we still weren't 100% either way on it? And they're like, Okay, well, we want your a one fee under six, which I don't know, my job was on the floor. If I had never, I was gonna say, Where was it when they said that to you. Um, I think when I started seeing this particular team, I think my agency was like an 11, it was high. And then I kind of hung around eight, nine, for a while it would kind of bounce back and forth. So it was like, Okay, I have to get it down to a six. So I was like, I am not sure I will ever, ever be able to do that. But they're like, you know that that's what has to happen. And so did you.

Scott Benner 51:33
Did you tell your husband, you better start looking at puppies? Because I'm not 100%? sure this is gonna work?

Maria 51:39
No, I mean, we had, we had several in depth conversations about, here's what it's going to take and you know, I will need your support. But it's all me, you don't have to do anything, I have to do all of this. It's, it's a lot. I don't know if I'm going to be able to do it. And then there was the other aspect of, you know, we've never tried to have a baby before, I had no idea if it was even going to work. So I was like, we could go through all this. And we should go through this exercise. Because I do need to get my agency down. I think my life's gonna be it will be better once I am able to do that. Um, it's something I should be doing anyway.

Unknown Speaker 52:19
But it's

Scott Benner 52:20
your head, like, what if we're in fertile somehow or? Yeah, yeah, cuz that wasn't you weren't thinking like you couldn't figure out how to do it, do it? You were thinking, right? You weren't just like, what if this doesn't work? And my hand ends up pregnant? And so. Right, right, right. It wasn't a misunderstanding like that. Right. Interesting, is that you needed his support, but you didn't need him to do anything. What does that mean?

Maria 52:47
I mean, so to control my diabetes, you know, I need I need a supportive ear to listen to me whine when things aren't going well or, you know, be there to support me emotionally but physically, managing the disease, managing my insulin, making sure my blood sugar's stay within range, I, I do all of that. My husband understands her diabetes works. But if I was, you know, if I was unable to communicate with him, he couldn't run the show. But, um, so it's on me, so I, you know, I felt pressure to like, if this is something we want to do, if I can get my act together, it won't happen, because it's all on me. So, you know, just, I wanted him to understand what that what that pressure was, for me what that meant. And then, you know, be just kind of be ready to go through that as I was gonna really give this a try to get the agency down. And like, we kind of made an agreement, like, you know, if we're going to do this, if we're going to try to have a baby, we will not start trying until my eight one C is where it needs to be.

Scott Benner 54:00
You have to prove to yourself, you can actually get there. And then on top of that, you want that. Trust me, I had a long conversation about all this yesterday with the CD. So now I understand that a little better than I used to, but you want the baby's development to start at the right place? Not right, not begin and then hope you can get it the rest of the way.

Maria 54:18
Yeah, absolutely. I mean, and then you have to write maintain it for nine months. So it's much easier to already be in that spot rather than Oh, crap. Now I have to get there and figure out how to do it on an ongoing basis, right? Because

Scott Benner 54:30
what if you can't figure it out right away and it eats eight months of the pregnancy? Okay, so what did you figure out? Like, because I'm assuming you, you've steadfastly made that agreement with each other. So you had Dre once he had sex when you got pregnant. So how did you how did you get to that spot?

Maria 54:47
So that was a combination of getting the Dexcom getting the Omni pod, which I love so much, but it was Have that happened, like I said about two, maybe almost three years ago at this point, so I was already on those. But then finding, I guess, finding the tips, and listening, you know, listening to this podcast, I think the Pre-Bolus thing really helped get me there. My range on my Dexcom now is 70 to 120. So I'm really trying to keep that tight control.

Unknown Speaker 55:27
Those are my limits.

Maria 55:30
So, you know, that was combination of it just trying to be I'm just I'm so much more relaxed about it. Now, when something goes, quote, unquote, wrong when I get a blood sugar that I don't want or don't expect. I can still get frustrated, but it doesn't just, it doesn't turn into, Oh, I can't do this. What is wrong with me? It doesn't get to that point. Like it used to be.

Scott Benner 55:55
I'm so glad to hear that. Can I go out on a limb and ask if it's a boy, you name it, Scott?

Unknown Speaker 56:01
We can. We'll keep it on the list.

Scott Benner 56:04
It won't know. My middle name is terrible. So I can only offer my first name to you know, that is just really, that's great to hear. Like it really is. It's It's It's hard to put into words from my perspective how nice it is to hear you say that. So I'm just really happy for you. Yeah, oh, wow, congratulations. The you weren't infertile? And I, you know, do you know, I don't, I don't know how much people will believe. But when you came on, I didn't know you were pregnant.

Maria 56:39
Yeah, no. When I reached out to you, I certainly wasn't

Scott Benner 56:42
right. And so. And when we started this phone call, like when you said a couple minutes ago, like when I was like, how did you do it? Like, I don't, I don't know. And you're like, Well, you know, it all starts with on the pod indexing. I'm like, oh, people are gonna think this is ad placement. And then you were like, but I got them three years ago. I'm like, Oh, that's back when the podcast started. There's no way that they think that now, but I think we're learning is. And I really mean this is that first of all, I've said it a billion times the podcast, there are ads on this podcast from Dexcom and Omni pod because I 100%. Believe in them, and know how you can how they can be used to create great experiences like the one you're having. And then that's why it's there. plenty of other people try to advertise on the podcasts, and I don't talk to most of them. And, and but the the bigger point is, is that those tools really are. I mean, they're just game changing. They just they really, really are, I mean, you can live your life otherwise, you don't have to use a pump, you know, you can you can totally do MDI, if you're willing to give yourself a bunch of injections every day, you can't manipulate the basal rates, which is, which is problematic if you're really trying for, you know, to make, like small adjustments, these bumps and things like that. But I'm not saying that's the only way to live. I'm just saying that. It gives you a layer of understanding that most of the time without, it just makes a lot of this really difficult and can put you in a lot of situations like the ones you've experienced, which were, which are terrible. I really think if we go back in a time machine and find you in high school and slap a tubeless insulin pump on you in the CGM, your life goes differently. And so, you know, it just didn't exist them.

Maria 58:26
Yeah, I think so. I mean, the the Dexcom certainly is game changing, and I did have other CGM before Dexcom. You know, that stayed on for three days. They were painful. They were inaccurate. I hated wearing them. Like, there were I wear for three days, I'd be like, yeah, I need a break. I'm not gonna wear this for a little while. And now, I actually had a situation a few months ago, where my Dexcom I did something like goofy and started a new transmitter earlier than I should have, because I thought the other one was dead. But it wasn't. It was just a little bit of a learning curve mistake. But anyway, I found myself I was going to have two weeks before my insurance would pay for another transmitter. And I paid out of pocket because I was like, I can't, I can't. And I never would have before I think back many years ago, I would never have said I love a piece of diabetes equipment that just never would have come out like it was cumbersome. It was something I had to have. But I I love the Dexcom I love it it. Um, it makes my life a lot easier. And I just it's hard to imagine that there were days where I didn't have it.

Scott Benner 59:46
Yeah, no, no, you just described Dexcom the way I talk about TiVo. But no, it is weird to talk about something that is wholly unsexy. Not something you really want to have in your life. If ever Anything was perfect. And you had your druthers, right? But, but it this being what this is, this stuff is it's just it's it's aces, I don't know another way to say it like there's nothing better than then than having that kind of view. And then having the ability from there to make these like little bumps and everything like that, and not just in your insight, I just did it. While you know, we've been talking for just about an hour now. And when we got on, right before we got on, I got alerted that Arden's blood sugar was creeping up over 120. And so I sent her a text because she doesn't get alerted till 130. And I said, you know, just, I think I gave her like, literally like point three, I said, 2.3 and we You and I were talking for about 15 minutes, the point three didn't work. And we we bumped it a little more. But I've got a you know, we're gonna have to Pre-Bolus for her lunch in about 40 minutes. So I didn't want to do too much. But at the same time, she just got rubber bands in our braces, and her mouth hurts, I thought maybe a little more sweet, bumped it a little more. And now it's coming back it that 120 diagnol up got to 139 now it's down to 133. And it's gonna keep drifting down, she'll be more like 120 when we Pre-Bolus you know, and that's still higher than I was hoping for today. You know, but she's got this pain in her mouth. So she's a little elevated and stuff. And then but just all of what I just described, took 25 seconds to accomplish. Like, literally, if I did it while I was talking to you. I never lost track of what we were saying. And you'd never know why I was doing it. Right. But if Artem is using, you know, if she was using pens or injections, I would not have texted her at school and been like, hey, try to draw up less than a half of a unit of insulin while you're in math class. And, you know, just it just wouldn't, that wouldn't be the world we live in. And then you don't think of it that way. But that 120 would have turned into 150, maybe 160 than it would have sat there. And then she would have been more resistant when we Pre-Bolus and the Pre-Bolus wouldn't have worked. And then the insulin I tried to use for lunch wouldn't have been enough. And you know, and if anxiety hit me and I thought oh, well, I can't you know, I don't want to be too aggressive because she's at school. And that's how she comes home from school. But 200 later today, like it's just if this one little thing, I I can't stress enough to people that it is so much easier. And I want to ask if you find this to work in the tighter parameters, right? Like it takes less effort, and less of your focus and time and attention than it does to be all over the place. Do you find that? Yeah,

Maria 1:02:34
I will tell you when I think you said you've probably been saying on the podcast for a while. But when I first heard that I was like, absolutely not. I mean, that's so hard.

Scott Benner 1:02:44
That doctor here we're like, idiot shut off.

Maria 1:02:47
I mean, I was like, I mean, sounds great. But I don't know how to do that. But I am at that place now where it is it's so much easier. I didn't think I could ever get to a spot. I mean, nothing's easy, right? It's, it's still work. But it is a lot easier to keep things in that tight control, rather than always correcting higher low. You just you're swinging around. For me, that makes me actually pretty exhausted. I feel bad when that happened. Um, so you can feel better, and make those subtle shifts and it it it is easier. I know it's hard. It's hard to imagine. Right? Right. But it really is.

Scott Benner 1:03:33
I'm glad you found that and how long did it take you to get from? Hey, that guy on the podcast doesn't know what he's talking about to Wow, this is easier.

Maria 1:03:41
Um, I mean, it took a while. So within the past year, I had a one sees I was pretty steady at like 7.5 7.5 I think maybe two or three visits in a row over the summer, actually, probably in August got down to 6.5. I think I had I think I adjusted my limits probably last summer on my Dexcom. And then I was at 5.9 in January. So I say really within the past six months. I've probably been getting to that place. Was it being more aggressive with the insulin? That was the last step? Yeah, yeah. Yeah. Not being you know, a friend in the DEF CON kind of gets rid of that fear.

Scott Benner 1:04:30
Yeah. And also, I would say that making smaller adjustments like a lot of insulin highs cause lows and as much as you make these big boluses and then later the carbs in your body or whatever is affecting your blood sugar ends up gone, but the insulin stays behind and then you get low. And if you're making smaller adjustments, and there's not as much insulin to cause those lows later,

Unknown Speaker 1:04:51
right. Yeah.

Scott Benner 1:04:52
My gosh, you are you are you are you really put my weekend on a good path. Like I know I was sad in the beginning. But now I'm super happy. Thank you did Is there anything about anything that we didn't cover? Or sometimes you seem like you thought about this before you came on, which I appreciate, by the way?

Maria 1:05:11
I did I made notes. Um, no, I

Unknown Speaker 1:05:14
think.

Maria 1:05:16
No, I think that it's just, you know, I hope that I know, there's a lot of parents who listen to your show. And so I hope that they're not totally terrified, by, you know, the experiences that I went through that I talked about today. You know, because even if your child or even if you're listening to this, and you have diabetes, and you go through it, you can come out on the other side, it's a much better place to be, it's, it's hard to get there. But you can do it if, if I can do it, anybody can do it. You know, and I think that, just because you have a time in your life where diabetes seems impossible, it you can come back from it, and especially with the right tools and support, just keep looking for what works for you. Because it's a little bit different for everybody, but

Unknown Speaker 1:06:08
it can work.

Scott Benner 1:06:10
Yeah, I can't agree enough. I really can't, I can't tell you how happy I am for you, or for your husband or for that little baby that you're making little Scott. And, and, and but just generally speaking, I'm just thrilled that you said that because it is really difficult to imagine when you're not when you're not in this place that this place exists or that you have the, the skills or the or the wherewithal to get to it. And I'm just because you just said if I can do it, anybody can do it. I'm telling you, if I can do it, anybody can do it. Because I was I'll tell you a million times in the shower crying, I'm gonna kill her. I'm not good at this. I'm never gonna figure this out. I mean, that was me. I was as bad at this as you could possibly imagine at one point, and, and now I'll say it here because I think it I think it, it bookends things nicely. 5.6 to 6.2 that's Arden's range for over four years now. Yeah. Incredible. Not even hard to accomplish. And I'm telling you last night, homemade chicken pot pie. And then she ate it and goes, I didn't love the crust and then went to the refrigerator and got a piece of lasagna out that was leftover from last night. I don't know how many carbs were in the pot pile nominee, Congressman lasagna. Later in the evening, around 10? Yes, my 14 year old is still up at 10 o'clock. You can judge me if you want. She's like, I'm hungry. And then she had Apple Jacks. And sure none of this sounds healthy. But but

Unknown Speaker 1:07:41
but a teenager.

Scott Benner 1:07:42
Right. Right. And, and her blood sugar was like 110 all night?

Unknown Speaker 1:07:47
Yeah, that's awesome. Like, like,

Scott Benner 1:07:48
yeah, just that's it and, and had labels the Apple Jacks, I don't know, she was eating handfuls out of a box. And then at one point, she's like, Can I get a cup of milk and throw them in that? I'm like, Yeah, sure. And like, you know, I had her blood sugar drifting down from the lasagna, and I knew she was gonna need some sort of a snack at the end of the night. So she's eating it and eating it. And like, she's down at like, 76 and a little diagonal down sheet in the cereal, oh, my God, and where everybody else might be like, I don't know what to do. I was like, This is perfect. And you know, like, and so I saw the end of the lasagna Bolus as the Pre-Bolus for the nighttime snack and, and then when it was over, I'm like, Alright, let me wait. And you know, you might say, well, she had, it's ridiculous, I don't even know, seven of her handfuls of Apple Jacks, one of my handfuls and the amount of milk that I can't possibly tell you. And then I looked at the Dexcom and watched what it did. And I said to myself, Okay, I'm gonna put in, and it was a tiny bit of insulin, it wasn't nowhere, it wasn't anywhere near the amount you would need, if you would have taken those Apple Jacks weighed them out, and count the carbs with and I'm like, I'm just gonna put in like, three quarters of a unit right here. And I just kind of manipulated the arrow around and when it leveled out, I was like, Okay, then it tried to drift a little bit, so I bumped it back. And then I went to bed. And that was it. Yeah, I

Maria 1:09:11
mean, it just does become a little bit intuitive. After, you know, after you do it for a while, it does start to get a little bit easier, and you just have to, you have to work a little bit less hard. You still have to work but it it's not. It's not quite the uphill battle anymore. And I think that's certainly, you know, being able to look at the Dexcom I still have issues when, like being just being at work where I can't totally focus on my diabetes shirt, you know, 100% every minute. But it's just easier now. I'm able to catch things and it is intuitive now. I kind of feel things or I know like this food. Yeah, it's probably this many carbs, but I know I'm going to have trouble later if I don't split This dose extended or whatever, that it becomes easier. I

Scott Benner 1:10:04
don't want to say that I get it right every time. I certainly don't. and I are gonna Arden's blood sugar jumps a couple times a day, honestly 151 8200. But we get it right back again. It's not like a, I don't see it going up and go, I wonder how this is going to end I see it going up. And I'm like, Oh, you know, we missed on a bolus hit it, you know? And, yeah, and it's just, you know, I know that some people here anyone see a 5962. And they think that they imagine a like a CGM line in their head that's 85 straight across for forever and ever. It's It's not like that. They'd be nice. Yeah, that's not gonna happen. That's what, you know, you get that when you don't have diabetes.

Maria 1:10:42
Right. Um, and I think that you, you know, you do it gets to be, you know, those highs and the lows are going to happen, they're going to happen. And I mean, you're expected to keep during pregnancy or agency, you know, in very tight control. But you can't beat yourself up and go off. Fourth, if you do get that high, because I know it's going to be there. You just have to fix it. And, you know, and move on with your life.

Scott Benner 1:11:10
So just that mantra when something goes not the way you wanted, don't think of it as a mistake, but a learning experience it that actually helped you.

Maria 1:11:18
Yeah, I think so. Um, it's kind of like, you can be upset about the thing that's happening. But then you're also giving yourself another problem, in addition to your existing problem.

Scott Benner 1:11:29
Yeah. So you might as well just, you know, better fix it and move on drama is definitely your enemy. Even if it's just personal drama in your own head. It's not a, it's not helpful. What is really great to hear that anything that I made up in my silly head and said on this podcast helped you. So I really appreciate knowing that because in the end, all I'm doing is I'm having experiences over and over again. I'm thinking them through, I'm coming up with an answer. I then try the answer a bunch of times it actually works. And then I go, Okay, this is valuable to share. And that's pretty much the process. So it's really cool to hear the end of it, which is you heard it and it did something.

Maria 1:12:08
Yeah, absolutely. It does. It helps. You know, you don't get it. I think a podcast is unique, because you get to really kind of dive down into what was what was the context of the situation? What were you thinking about? What were you anticipating and what happened? It's different than sort of a message board where it's just a thought here, a thought there you really get. It's like sitting with someone else who has diabetes and kind of doing shadowing them.

Scott Benner 1:12:35
Yeah, yeah, that's really helpful. Yeah, even blogging about it, it's not as bad. It's, it's valuable. But it's not as it doesn't accomplish what you just said, you can't, you can't really break it apart, deep dive, give examples, you know, that kind of stuff. So I'm just I'm so thrilled. I really am. A huge thanks to Maria for coming on the show and sharing her experiences with burnout. And hold on one second gonna tell you about the baby. But first, thank you Dexcom. Thank you on the pod. Thank you dancing for diabetes, please go to the links in your show notes at Juicebox podcast.com. Or if you have to type it into browser yourself, do it. But just remember i'd love it. If you click on the link. It's my omnipod.com forward slash juice box. dexcom.com forward slash juice box and dancing the number four diabetes.com. Okay, let me find my my note from Maria Hold on a second. tell you about the baby. A lot of babies born for people who've been on this podcast. Have you noticed? All right, here it is. Maria, I said to Maria. Hey, Maria. I'm getting ready to post your episode. Do you have any updates that you can share? She said Hi, Scott. exciting to hear from you. I've got a pretty big update. Actually. Our son Wesley was born two weeks ago tomorrow on 925 height a very healthy pregnancy. My agency was between five nine and five seven the entire time. He came a little bit early, but with no complications. It looks like Wesley weighed six pounds 13 ounces, and was in the 50th percentile for growth during the entire pregnancy. Maria says they're at home now doing well and trying to figure out life with a newborn. But they're very much in love with the newest addition to their family. Guys, listen, this isn't an after school special or anything, but I think I got to come in here with the moral to the story. Maria experienced burnout a number of times throughout her life and look where she is. Now. What does Maria's story teach us? Three simple words. Don't stop believing. And I'm not gonna sing Don't worry. I actually tried it a second ago it went incredibly poorly and I deleted it was really kind of scary. Actually. I was all falsetto and I'm not a good singer. It was really horrifying. I mean, I've left a lot of stuff in this podcast where I sounded stupid but this I was actually like I'm taking that out. That is horrible. I should should never do that. Alright journey fans. See you next week.

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