#773 Rainbow Connection

Tziporah has type 1 diabetes.

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

Scott Benner 0:00
Hello friends and welcome to episode 773 of the Juicebox Podcast.

Today's guest is an adult living with type one diabetes who is also a mother. Her child does not have type one, but does have other autoimmune issues. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice and should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. We have a new sponsor today. So in a moment, I will tell you who that is. But before we get to that, I want to remind you that if you're looking for the diabetes Pro Tip series, they begin at episode 210 In your podcast player, you can find them by searching Juicebox Podcast pro tip in any of your audio apps, or you can find them at juicebox podcast.com diabetes pro tip.com, or on the private Facebook group under the feature tab. If you're a US resident who has type one or is the caregiver of someone with type one, please go to T one D exchange.org. Ford slash juice box and complete the survey. It will take you fewer than 10 minutes. It is absolutely anonymous and HIPAA compliant

this episode of The Juicebox Podcast is sponsored by athletic greens, makers of ag one, I started taking ag one because I don't always have the most balanced diet and I needed some nutritional insurance with one delicious scoop of ag one you're absorbing 75 high quality vitamins, minerals, Whole Foods sourced ingredients, probiotics, and adaptogens Learn more at my link athletic greens.com forward slash Juicebox Podcast is also sponsored today by Ian pen from Medtronic diabetes are using insulin and once some of the features that are offered by an insulin pump, but you don't want a pump. If that's you, you're looking for the in pen from Medtronic diabetes. Get started today at in pen today.com

Tziporah 2:18
Hi, good morning. I'm Sephora.

Scott Benner 2:22
Alright, Sephora. I did get it right before when we were talking. You did something about you. I wasn't sure if you were being sarcastic with me when you said yes.

Tziporah 2:34
It's a good guess that I'd be sarcastic. But you did get it right.

Scott Benner 2:37
So Tziporah. Not Sephora. How many people hit you with that? Like they?

Tziporah 2:45
Like the makeup store? Yes. That's Japanese beer. Nope. Neither of those. Not

Scott Benner 2:50
you. Right. And it's a name you go by? Right? You don't have like a nickname? Yeah, good. That's lovely. What's your deal? You have diabetes, you make a baby that has diabetes.

Tziporah 3:01
I have diabetes, I made a baby that does not have diabetes yet. As far as I know. How old were you when you were diagnosed? I was diagnosed a month shy of my second birthday in 1981.

Scott Benner 3:14
Wow. Wow, about that. That's Young.

Tziporah 3:21
That's young. And I'm old. And that is real.

Scott Benner 3:25
So I I spoke with somebody yesterday, who's had diabetes for 45 years. But was my age. And the entire conversation made me feel old every time something came up, or when they understood my references, which I even found bothersome for some. We're still getting that microphone touching something or you know, don't be sorry, you talking with your hands and breathing. I'm gonna stop. Stop breathing, please. Sorry. I made I made a person recorded a closet yesterday. So they come on, and I immediately I'm like, Are you in a room without carpeting? And they go, how do you know that? And I said, I can't I can't do it. Within here. It's all echoey. And she's like, I could go in the closet. And I was like, Fine. Perfect. So she sat on a stepladder with her laptop on a piece of luggage and very nice. Okay, so Okay, let me break this apart in my head. So I understand. So 81 Was that right? Yeah. And it's 2021 Now, it's 2022 where I am. Is it really? 2022 now, so let's go 91 2001 2011 2021. You've had diabetes for 41 years.

Tziporah 4:40
That's right. It'll be 41 in June,

Scott Benner 4:42
and you're calling 43 old? Yes. All right. We'll see about that. I can now hold you in a second. How old is your child or children?

Tziporah 4:53
She's 11.

Scott Benner 4:55
Okay, and is there any other type one in your family? way.

Tziporah 5:02
I was gonna say no, except I have a cousin of my mother's who died in his teenage years with type one and this was like, you know, early 1900s That was all I got

Scott Benner 5:14
a born before insulin. Yeah, that's just that's really a shame. How about other autoimmune stuff in your family?

Tziporah 5:21
Oh yeah. So my daughter has alopecia. So she has no hair. So every time somebody comments on my hair, my hair is brushed against the microphone. Can you move your hair from a microphone? I think you know, that is a thing for me. And it's not for her. So my my daughter has alopecia. My mother has alopecia. We've got autoimmune thyroid, a couple of other autoimmune things. And my niece and nephew.

Scott Benner 5:47
Well, how is that alopecia is something you're born with?

Tziporah 5:52
No, it's I mean, it's, it sort of is activated in a similar way to the diabetes. So she had a full head of hair. Curly, awesome. Like it was one of the first things people noticed about her before she opened her mouth, which was the second and loudest thing people notice about her. And, and then it all started falling out when she was like three and a half.

Scott Benner 6:13
So you think she just had an illness or something and her autoimmune response? Yeah. Alopecia. What is a child that young? Do do? I mean, do you wear wigs? Or do you just go with it?

Tziporah 6:27
You know, I think every family is different. Every kid's different. She just sort of has always worked what she's had. So she did headbands for a while she occasionally did crazy hats. And now she just doesn't do anything. And feels mostly, I think, pretty comfortable in her own skin about it, which is awesome.

Scott Benner 6:46
Yeah. Is it a complete loss? Like, is her head like, does it look like? I mean, I'm trying to think of how to say this, like, does it look like she just shaved her head? Or is there some hair or how does it

Tziporah 6:58
so alopecia has different manifestations. She has the kind where she's basically got no body hair anywhere. She's got no eyebrows, no eyelashes, no hair on her head. So it doesn't even look like a shave. Because there's like no stubble. No, nothing.

Scott Benner 7:14
I see what other problems that I'm not thinking of does not have in body hair present. Oh,

Tziporah 7:20
well, it's cold season. And so we don't often think about the hairs in our noses and what it does to the snot sorry. But hers just runs. I mean, like, there's nothing to catch it. So you know, when she gets a cold, her nose is real runny. The eyelashes do protect things from getting in the eyes. So, you know, she has to be a little bit more cautious about stuff getting into her eyes. Probably her ears too, although I haven't looked in there in a minute.

Scott Benner 7:47
Hmm, it just alopecia sounds like a radio name from the 80s. Like how you doing? It's alopecia? Yeah, but instead it's horrible.

Tziporah 7:56
Yeah. I mean, it can be, you know, I've talked to her a bunch about this over the years. And as she gets older, you know, her own narrative about it is evolving. So there's treatments now, for example, that can help with turning off the auto immune response and regrowing hair and lots of people. And I said, Hey, you know, do you want to talk to somebody about looking into this? And she said, No, I kind of like the way I am. And so it's just one of those things that I think she's integrated into her identity and how she moves through the world and her friends are down with it. And you know, it doesn't mean she doesn't, you know, get snide remarks or side eyes or whatever, from time to time, but I think she is, you know, she walks around like, she's fine. You know what I mean?

Scott Benner 8:41
Hey, I'm gonna ask a question that will like initially sound slightly weird, but I'm getting to it. So by your name, and I'm guessing Jewish. Yes. Okay. Good guests. Yeah, yeah. Well, look at me, I'm a I'm a real gene. Reason I asked was, how does? How does a person being maybe your daughter's not but how does a person being more dark complected look without like, I guess I'm trying to figure out how much of your hair color makes me think of a person that's being dark complected where is your child? Not classically? All skin?

Tziporah 9:19
She? I would say, you know, she's pretty fair skinned, actually. But I will tell you, like eyebrows make a big difference in terms of somebody's face. Like, I'm looking at your picture on your zoom screen here. And I'm trying to figure out like, what would you look like without eyebrows? That's weird. Sorry, probably. Nobody's ever told you that. But it does really change the look of somebody's face. But it's also been so long since I've seen her with eyebrows that it's just her face.

Scott Benner 9:47
Yeah. Okay. All right. So is diabetes, something you worry about for her?

Tziporah 9:55
I do always have it in the back of my mind. Like as I've listened to podcast up So as you're seeing posts on the Facebook group with parents who are wondering if their kid in illness who's not diabetic is, you know, secretly holding on to a high blood sugar like I've definitely got that sort of all the time. She did do trial that she was negative for antibodies at that time and I never re enrolled or retested or anything, I just am crossing my fingers, you know? Yeah,

Scott Benner 10:23
I don't say it here very often. Or maybe I've never said it, but I sometimes I look at my son, and I'm just like, please don't get diabetes. Again, just like it just I never say it out loud. I don't think it changes my demeanor. But every once in a while, like, you know, if he goes through something, and I don't know, it's like, well, that's enough. Like he doesn't need more like not that anybody needs more. But it's, it does run through my head sometimes like, Yeah, but and I think I look at Arden and I'm like God, like nothing else. Like please nothing else like this is I get an amen. So

Tziporah 10:56
when my kid was little, and we were just sort of peeling off the alopecia thing and her being different. I said, you know, if you look around everybody's data thing, at least one thing. And I say no, my things, diabetes and your things alopecia. And even from a young age, she could sort of start to appreciate that nobody gets from here to the end, wherever that is, like without a something. Her something is quite visible. Mine is like, mostly invisible. But the other thing that I didn't quite crack to her at that age is like, just because you get one thing doesn't mean you'll never get another thing. And in fact, on the autoimmune spectrum, if you get one thing, you know, you might well get another or third or for whatever. So I do wish for her to not have more things like you wish for Arden or you wish for your son.

Scott Benner 11:41
Yeah. No, I I don't know. It's just, I can remember how it felt to find out that Arden had hypo thyroidism. And I was I was so mad. Just like I wasn't angry when she got diabetes. I was sad. I was angry about hypothyroidism. So I angry. No, I felt unfair. And she was still young. And out, it's completely out of your control. So it's not even, you know what I mean? Like, people give you a baby. And they're like you're turning to a person and keep it safe is really your to your to you don't have any other functions early as their parents, right, like you want them to grow up to. I mean, I don't know about everybody else. We had basic like concepts about raising kids like I, I seriously, at the core of how I raise my children, I just wanted that when they left the company of others, that people didn't go kids. You know what I mean? Like I just I wanted them to be a reasonable person. And whatever that meant for them, however, what direction they took it, and I never had many thoughts about that. I just, I just wanted them to be a person that other people didn't like recoil from. And I know that's like, maybe sounds like overly simplistic. And I and that was it. Like seriously, I didn't really think about much more of it than that. And I was doing it, like my kids ended up really well, in that regard. And then all the other stuff I was supposed to do. You know, I fed them and gave them clothes and kept them warm, and they're loved and they know it all that worked really well. And then I just couldn't keep them from being sick. And it just feels like it feels like

Tziporah 13:27
to say it sounds like defeat.

Scott Benner 13:30
Yeah. And it's also one of those things where they're like, listen, the army just came in and kicked your ass, they'll be back. You won't be any more prepared to fight them off the next time

Tziporah 13:40
and you won't know when they're coming.

Scott Benner 13:43
So you feel like a you feel like a victim a little bit. And that's unfair. Because like you said, and by the way, I've said on here a million times and really believe it. Nobody gets out alive. You know, nobody gets through it unscathed. Everybody gets a thing. And so I even feel that that's fair. But

Tziporah 14:04
well it's different when you're looking at your kid your non asked kid I mean like the one that you brought into the world and invested all that stuff and like I would guess that many parents look at their kids and just wish for their path to be completely smooth all the time. You know, I'm also the kind of person who thinks in retrospect of course not what not when it's my own kid but whatever bumps they have are going to help them be the person that you want them to be you know, like how they manage adversity or how they relate with other people through it or what they own and what they don't want and you know right now becomes part of that

Scott Benner 14:42
Yeah, I mean I could make an argument in a similar but different direction I first of all I'm a pressure makes diamonds person myself like I don't think that I mean, I don't know to use like a big example and an unfair one because I don't know or like I wouldn't want my kid to be a Kardashian. You don't like that kind of thing. Like, I think you need some sort of some some troubles gotta come your way, right? You have to learn how to fight through things. And but I only say that I guess with comfort knowing that my kids are kind of psychologically centered. Because if my children were depressed or anxious or super anxious or something like that, I might even say to you like, oh God, like, you know, why can't their coach or their teacher or whoever, like cut them a break? They don't you know, they don't? I don't know. I don't see any of that stuff much differently, I guess. Yeah. It's like you said, it's the thing that impacts you is the is the thing that you have a sensitivity to. And I may have just referenced something that we talked about before we recorded so sorry about that. All right. Yeah. All right. Why the hell are you on this podcast? Let's figure that out.

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Tziporah 19:51
You know that's a really good question. I was listening to some of your other episodes where you ask people like what made you want to do this and so I went back to my litany of Facebook message Just to you, and I'm thinking, why did I ever reach out to him? You know, the first couple of things I sent were like, Hey, have you ever thought about this on the podcast? Have you ever looked at that? And mostly, those questions were out of my own experience are wondering, like, is this a diabetes thing? And then one day I wrote to and I was like, Look, I don't really know if I have anything that would be of use to anybody else. But here's all the stuff I got. And if any, it would be cool. Let me know. Yeah. Well, and I'm sure and then you're like, Oh, you're short for let's get you on the podcast.

Scott Benner 20:30
Don't give away that I don't have any real insight into sort of, I don't know, rules or anything like that. They do. Like I'm really I'm sure. And I'm like, good enough to get on. We can

Tziporah 20:42
Well, I mean, in fairness, you were like, Oh, you're short. You can wait a really long time before you record. And if you still want to do

Scott Benner 20:48
it and do it. Well, that that is and I do feel bad about that every time. No, that's all right. Yeah, it is such a long i We figured it out the other day. It takes about it could take about 15 months, from the time you email until the time your episode goes live. Yeah, yeah. So.

Tziporah 21:08
So one of the things it's a good problem to have. Sorry, go ahead.

Scott Benner 21:11
Oh, no, it's certainly as I go into a slight panic and flops. But every time I think about what would happen, I complain the whole time, look at my schedule, I record every day, I need a break, too. There are times where my voice hurts when I'm doing it. And then I think I'll just take a week off. And then the other, the other voice in my head is like do not do that. You're gonna six months from now, you're not gonna have content when you want it. So the one thing I thought you said in your notes that was really interesting, was that you said, talking about training doctors and NPS about being good human beings. Yeah. And I'm dying to know where that came from. Yeah,

Tziporah 21:49
so I the short version of the long story, or maybe the medium length version is when I was a kid, like, I remember sitting in the doctor's office in my pediatric endocrinologist office, and thinking to myself, that's what I'm going to be when I grow up, I'm going to be a doctor. And not only am I going to be a doctor, I'm going to do diabetes, and I'm going to do it with kids. And probably lots of kids with diabetes have that thought from time to time, but I was like, these people suck, which I'm sorry, I won't. Not all of them. It. But I remember thinking that as a kid. So I sort of set out my my path from that age, whatever that was, you know, probably younger than my kid. And that didn't go as I planned, mostly because I failed anatomy and physiology. I learned in my classwork that I probably wasn't suited for many reasons to go into medicine in that way. But I ended up sort of circling back into medicine, through the pathway of getting my degree and family therapy, and I'm thinking about healthcare in a really different slice. But probably, like my niche area is about that intersection between health and illness and how we experience it as people and recognizing that lots of health care professionals don't really get good training and how to attend to that part. So there's really good evidence based guidelines for managing all kinds of things. But most people don't know or don't get good training or practice in how to sort of meld that with, like relating with other people. So I spend a lot of my time in that domain training people.

Scott Benner 23:19
You just made me wonder how many people decide they want to be doctors then realize they wouldn't be good doctors and do it anyway.

Tziporah 23:27
Well, right I, I can't speak to that. Speak to that I probably can't even share stories without getting into trouble. But I will say, you know, being a healthcare professional now is so much more than just the medicine. But like you have to get through that door of rote memorization and tons and tons about the human body, which is like super fascinating. I probably wasn't fascinated with all of it. I'm probably I've always been fascinated with the people part. So I think I probably found the right path. For me, that was the balance of that.

Scott Benner 23:57
So there's this thing, and that's in my head right now because it happened earlier in the week, I recorded an episode with a person who has had diabetes for a long time, and had been told over and over again, by doctors what a good job they were doing. As the years went on, this person came to realize that they weren't doing a quote unquote, great job. It was very once he was higher than it should have been. Their variability was higher their health wasn't what it could have been all this stuff. And they recognize that and they had pushed through and made changes that that were, were good for them. But when they talked about their health care providers, they had two different doctors, one that they loved and thought was terrific, and one that they really hated and didn't like at all. And as I picked through it, I learned that the one that they loved was the one that was telling them they were doing great. And the one they hated was the one that was telling them that there was some ceiling here and play Just to improve. So was fascinating because from a, from a physician's perspective, the ones they didn't like, were the ones that were trying to help them. The ones they did like were the ones that were telling them, hey, it's fine. Now, you all are never going to hear this episode, which is a shame. But because a couple of days after I recorded it, I got a message from that person. And they asked me not to air it. Because what ended up happening during the conversation, if I'm, if I'm understanding correctly, from what I heard during the conversation, and then what I saw later from the note is that I believe this person realized, while we were talking, that for a decade or more, that they had, they were doing something for their health that wasn't as good as it could have been. I think there was, I don't know, I don't want to ascribe their feelings, because I'm not certain but shame or guilt, or sadness or something. But I think what happened was, is that the recording turned into a therapy session, and this person had a breakthrough during it. And it wasn't something they wanted to share with somebody else, which I completely understood, immediately deleted the episode. I didn't want that person to be uncomfortable. But it's fascinating to me so much so that it keeps coming up in my head. How, in their mind, they picture the people who were not hurting them, but not helping them as much as they could have been? favorably? And vice versa. I thought that was really something and I wonder how much that happens to people with diabetes?

Tziporah 26:34
Yeah, I mean, my, I think it's a really good wondering, I think most health care professionals want to be helpful. And the person who was saying you're doing a great job, probably thought they were being helpful. And so to to the person who said, You got to do better. And, and you know, and honestly, each one of those scenarios is sort of like what's the rightest match for the patient, in this moment in their life in whatever course of their disease they have. And that's really tricky for other people to like mine read. So part of like, a lot of the focus that I have in my work is trying to get people to ask, like, where are you on this spectrum of? What are all the things that you need from me? How can I be helpful to you? Where are you relative to your own self management or what your next goals are? Partly because we can't expect everybody to sort of do a one off custom job of healthcare, except that each one of us is different and needs different things. across the lifespan, you know what I mean? Like what I need now for my health care team is different than what I needed when I was 18. Thankfully, yeah,

Scott Benner 27:41
I also what you're saying is making me thinking that made me think about, what if that doctor who was telling that person like you're doing great, you're doing great, what if they saw something else about them? And they thought they can't handle any more pressure? I can't pressure this person, hey, we're keeping their agency in the eights, at least it's not 10. And then, from there, I wonder, Is that really your? Is it really fair for a doctor to make that decision? If that's the decision has been made, which is sure your health could be better? I shouldn't be telling you that. But I don't think you can handle like, is it your job to decide who can handle it? Or is it your job to say, Listen, I don't know if you can handle this, but we need to get everyone see down or you're gonna have some long term complications. Do you know I'm saying like, where do you? I mean, it seems like if it's not the doctors job to assess you, Then whose is it? And then it even makes me consider the other side on the patient side. They do they even know that about themselves. And by the way, at this point, now I'm philosophizing like, I'm not talking about the original person anymore, you know, but like, what if I am a person who's high anxiety or depressed or just, you know, I don't look like I can handle it, or I don't look like I understand the math or I've proven I don't understand diabetes, how much of your doctor's job then becomes life support and not? And not health? Support?

Tziporah 29:10
I mean, if you're asking me, which I mean, kind of your,

Scott Benner 29:12
because there's no one else here.

Tziporah 29:15
I mean, yeah. My personal opinion. And if I look at like all of the health professions and their ethical codes, and like, what, what we're all responsible to do, when we step into that role, we have to be able to give clear, accurate information to patients, even if it's hard, but like, we don't have to hammer them over the head with it. So it's one thing to say, you know, what, you're working really hard on this, you're a one C is currently eight, like, let's look at the things that you're doing that will help you continue to be healthy. That's really different than Oh, you're good. Like, don't sweat it. So I think there's ways to keep sort of inching people toward what we know is gonna like be better for them in the long run and avoid complications without making them feel terrible, but What's hard is that you don't I always know what's in the eye or ear of the beholder. So some people are not going to feel great about hearing this eight isn't good enough. Except that like the right combination of this is what we know. These are, what the risks are, here's how I can help you. Like, that's the conversation I want people to be having with patients, you know, not avoiding the the scary stuff, because if we just sort of leave it there, then it won't make somebody anxious, like that person if they're anxious or depressed. Like they still need guidance and help to get there.

Scott Benner 30:31
I like talking to you. Why is that? Thanks? No, listen, I talked to a lot of people. And I've never had a bad conversation, because I think everybody's interesting. But you are pacing me. This is the pace I as crazy as it sounds like this is the pace I prefer the conversation you and I are having right now. But other people's energy dictates the pace of conversations. For me, and yours is a good one. I like your tone everything this is I didn't know you were a therapist. See, it's so much better? I don't know. Thanks. It's really, truly wonderful. I was just like, Oh, she's a therapist. That's interesting. Like you could have said anything as as your job. And I would have been like, oh, that's fascinating. I had no idea. I think that one of the I mean, I don't know how obvious it is to everybody, maybe therapists see it a little more who listened. But there are themes that I'm trying to reinforce quietly in the podcast, and the ability to talk to each other is one of them. So when I think about that somebody could have gone through medical school, ended up with a great degree and an understanding of a profession, and then can't communicate it as someone that's just like, I mean, it makes you feel like, like, what, why are we even trying? Like they get it? Like, I mean, you can make a doctor who can understand the medicine, but can't keep you from feeling attacked, when they explain it to you. It's just terrible. I mean,

Tziporah 32:09
I yeah, I think it is terrible that it feels like we sort of are, we shouldn't have to choose, none of us should have to choose. But there are also different skill sets. Like when I was pregnant, I remember somebody saying to me, would you prefer a doctor who has really good technical skills related to the delivery, which was going to be complicated? Or someone with a good bedside manner? And that question always stood out to me because I'm like, wait a second, these are not mutually exclusive things. Why can't I have both of them? You know, in reality, the question was, I'm thinking of these specific people and this person, her strength is this and this person, their strength is that, but you know, part of my mission and my work, and in my sort of every day thing is probably not unlike yours. Like, I want us to be good to one another. So whether you're a healthcare professional, or any other kind of person, like how you approach others in your world is really important. And I think a lot of that stuff is teachable, practicable and bearable. That's not a word,

Scott Benner 33:15
but you just have to want to do it, are they? So it's so funny, you brought this up as an exponent, as an example, because my wife has given birth twice. The first time she got bowtie, no personality that to speak of almost no facial like movement while you were discussing things with him. Great doctor, um, dry and calm. My son came out with a knot in his umbilical cord. And I went to cut the umbilical cord and I saw the knot. And I pointed to it and said, Is that a problem? And he held the baby towards me coal, and showed me that it was alive and when Apparently not. I mean, like that was this. Like, that was the extent of his, like bedside manner. Yeah, I mean, just a monotone and quiet and a slow speaker. But man, like you couldn't get a person to say, this isn't the guy you want in the room, if something gets sideways, you know, then the next person comes for Arden. And he's full of life, and gregarious and everything else. And as Arden's coming out, he's across the room, and I see this like big eyes behind his mask, and he runs towards Kelly's vagina as if the baby is about to fall out of it. And and he's almost look shocked by it. And I have no comfort while he's delivering the baby whatsoever, because he's just sort of like,

Tziporah 34:43
like, you sit and have a beer with him but like he was you forgot he was going to be delivering a baby

Scott Benner 34:48
wonderful guy was pretty upset that he was in charge of catching art. You know, and what, why, why to your point, like Can't we blend those people together?

Tziporah 34:57
I did in fairness. I do. think there are there is increasingly like less gap there. I mean, I think there is more and more awareness. Like if I look at the newer health care providers who are entering the field that I get to work with many, many more of them are way more sensitive to all kinds of things like, to the people skills, to emotional health and wellness to mental health stuff. And, you know, part of it probably is the specialty that I work in and practicing. But also like, I think, I think the generations are like, wait a second, we actually need to bring a lot of different things to medicine, or to healthcare and and people are selecting when they have those skills to so I don't think it's really like an all or nothing thing. And I do see, I do see it's getting better.

Scott Benner 35:45
Do you believe? Just your opinion, obviously, but are they more aware? Because they want to be? Or because they think they have to be? And does it even matter? why they're doing it as long as they're doing it?

Tziporah 35:59
Yeah, I mean, I think it's probably both. And it probably doesn't matter what the Genesis is like, you know, here's the other reality, which is going to sound sort of silly when I say it, but like health care, people are people. Yeah. A song or like a Kermit the Frog situation. But, you know, I think there are so many things that can get in our way of connecting with another person. And that's true no matter what kind of work you do. But I think in healthcare in particular, more and more people are coming with those skills already in there. They're coming with different life experiences, and and what training programs like medical school or nursing school are selecting for now, when they're looking at applicants is not just test scores. They're looking at a more well rounded, sort of socially connected kind of person now, which I think is driving that change that we're talking about.

Scott Benner 36:52
Hey, a minute ago, when you reference Kermit the Frog, were you thinking of rainbow connections when you're salutely? Why did we both know that?

Tziporah 37:01
I don't know.

Scott Benner 37:03
As you said that, I thought, whatever she just said that little like, made up t shirt slogan, you said? I thought it's reminding her of rainbow connection.

Tziporah 37:14
And or poor Barbra Streisand.

Scott Benner 37:17
That's a weird, there's something about the Pentameter of what you said, that made us think about I wonder why that isn't that interesting languages. I'm fascinated by people and how they speak to each other. By that, that's gonna remain the coolest thing that happened to me this month. I think that's awesome that we both had that thought at the same time. We should probably talk about diabetes. Sure. Let's do that. Do you have any idea how many times during this podcast? I think I should probably talk about that. But I've been doing it for a while and I just I'm very interested by people. So. Okay. So if you were if you had diabetes that long ago, you started on pork insulin, beef, pork? Yeah. Okay. And then transitioned in the mid, you probably only had to do it five or so years, right? Yeah, probably. Okay. Cloudy, regular mph after that. Yep. All right. How long did you that for?

Tziporah 38:17
You know, I don't really know for sure. Partly because I wasn't responsible for myself up until, you know, yesterday. So when I was really little, I mean, I think I followed that path, probably through on the mph and regular. I mean, probably at least till I was my daughter's age. She's 11. Okay, I got my first pump when I was 21. But I was on multiple daily injections up until then. But by that time, I think had graduated. I don't even know that I ever made the leap to Lantis, actually.

Scott Benner 38:53
So what is your health like, now? Did it work out?

Tziporah 38:59
I mean, I'm, I'm here talking to you. So so it's working. Okay. In general, things are pretty okay. From the diabetes perspective, I do have some retinal complications, which just sort of feels like an unlucky break. You know, I was listening to you talk earlier about some other folks you've talked with, and you know, or maybe I was listening to a podcast episode. In any event. You know, there are people who I know anecdotally who have had diabetes 40 5060 years and sort of remarkably have zero complications. And I grew up and I was like, Oh, I'm going to be that person. No matter how screwy my adolescence is, no matter how messed up my control was up until I decided to do something different with it. And then I remember the first time somebody said to me, Well, I see these little hemorrhages in your eye and I was like, you've got to be kidding. So I thought, well, I'll just be one of those people who has this, you know, little thing here. And it's not really going to go anywhere. And it now in retrospect just sort of feels like one of those things that comes when you've had diabetes for a really long time that I wished wasn't a foregone conclusion. And most of the people I talked to in healthcare say, Well, if you've had diabetes 40 years, like something's going to happen, the odds are incredibly high. Except I know people who don't so I mostly feel unlucky. But it's probably more complicated than that. Yeah,

Scott Benner 40:27
I listen, anecdotal, like times 1000. But I seem to be the first thing that people have a problem with, if they're gonna have a problem like that. That one seems more. I don't know. I don't I don't want to say it happens more often. But the frequency that I hear about it while I'm talking to people, is and it's usually people coming right out of that timeframe, where you were diagnosed to, just that, that like, you know, the story of like, I used to inject once a day, and then it was twice a day. And then I did this one, and we didn't really count carbs. And I just, you know, we didn't have a meter for a long time. Right? You know, but you were diligent about doing what you were supposed to do.

Tziporah 41:16
You know, mostly, I mean, it legitimately blows my mind when I look at people in my social circle who are new to diagnosis who have kids who are and I'm like, Oh, my gosh, you are hitting the ground running with like the absolute best. And you know, actually probably in retrospect, I did too, but the absolute best at that time was like urine dipsticks. Standard Issue injections of insulin and like you roll the dice and hope it works. Okay. You know, when I was a kid, my A onesies were always in the eights and nines. And I wrote back and looked at notes from my doctors at that time, and they were like, yep, everything's stable. Looks good.

Scott Benner 41:55
Yeah, that was the hope for really well, right,

Tziporah 41:58
because I had scary lows, too, and scary lows, and a little kid is scary, you know, that probably better than anybody. So I think, you know, we all I say we all everybody did the best with what they had, at the time, the best of what they knew the best of what the treatments were. And I think, you know, it just sort of stinks that, that decade, that first decade in particular, or maybe the first two. You know, if we transpose that a diagnosis in the early 2000s, or this decade, like things would probably look really different.

Scott Benner 42:30
Yeah. So no, I mean, I think it's, it's maybe akin to saying, you know, GE in 1960, can you believe we got to the moon and that piece of tinfoil, you know, wouldn't it have been great if we had Elon Musk's rocket, like we sure would have been, but we didn't. And there was no way to so you can't feel even. I mean, I guess, if you want to be healthy about it in your mind, you can't look back and just say, Oh, I wish it was different. Because it's, it's what it was. Right? Yeah.

Tziporah 42:59
I mean, like, I can wish it was different. And except that it is, as it was, you know what I mean? Yeah.

Scott Benner 43:04
I mean, I feel like if we could, like somehow resurrect somebody from the 1800s and say, Would it have been cool if you had a pickup truck when you're trying to get to Oregon? You know,

Tziporah 43:11
like, avoid that. dysentery. You hit

Scott Benner 43:15
Oh, my God, I don't think the hours from the from the Native Americans would have even been able to go through your Chevy Tahoe, like Greg. So it just, you know, it's not the same. You just, it's not apples to apples. You can't compare them. It's just interesting to hear. For me. I think. I like to hear the conversations, because I imagine that newer diagnosed people, they still got diabetes, or their kids got diabetes, it doesn't matter to them that they can have a CGM. Now, you know, I think they need the juxtaposition sometimes. Yeah. You know, so

Tziporah 43:48
I'm very grateful for all the technology. And, you know, I was, I was probably a late adopter to a lot of it. But now that I have it, like, I'm not sure I could, I mean, I can't ever go back sort of awesome.

Scott Benner 44:00
Right? Well, I think I think that if you're having diabetes and sticking with this line of stupidity when I make things up in my head, you have a Chevy Tahoe. Now you're trying to push West. And good news. The Cherokees did not upgrade to bazookas. So you're, you're still doing a difficult thing, but it's better equipped. Yeah, you're way better equipped. Yeah. So for sure. Anyway, you grew up in a family with a lot of children. I did. Like brothers and sisters more than you can count on one hand or

Tziporah 44:36
I have to think about how many fingers I have. I'm one of seven kids. And five of us, six of us mostly grew up in the same house for a number of years and then mostly it was the five younger five.

Scott Benner 44:48
Okay. Did your diabetes cause any changes to family structure or turmoil? Anything worth talking about?

Tziporah 44:57
Yeah, I mean, I think honestly like how Why even that to my current profession as a family therapist, and working in healthcare probably has a lot to do with how diabetes shaped me growing up in that family, like we are. All my siblings, we are accomplished smart, funny, likeable people. Like definitely fun to have it a party fun to have our own dinner. But like, we're we also have a lot of intensity among us. And so you introduce a very sort of significant illness and a very little person into a dynamic that's already kind of like a lot of energy, because there's a lot of kids and people are going in different directions. It really, it forces that family unit to do a lot of things differently. So whether it was around needing to wait to eat dinner, or who's going to give me my shot, or who's going to make sure I have this, that or the other thing packed before I go to school. You know, I think it was a it was part of the fabric of my family's life growing up my siblings in particular. And, you know, it's sort of hard to say what would have been different if that wasn't the case. But it also shaped like how we grew up with one another how they related with me or what they expected of me, or, you know, how long it took for them to see me as a grown up sibling, as opposed to somebody who's vulnerable or a little, you know,

Scott Benner 46:18
yeah. Do you ever talk about it with them as adults? Oh, yeah. Do you? Do you think they had any impacts on them themselves? Personally?

Tziporah 46:29
i Yeah. I mean, it's sort of hard to say exactly what all the impacts are. I think some of them would say, well, the diabetes, like took things away from me. And whether they would use that language or not, like, that's how I imagine it, because it does, you know, diabetes, at that time in my family took up a lot of space. So already, there's a lot of kids, all of whom each of them have their own needs, like on an emotional level on a day to day schedule level. But diabetes, sort of like forces everything to turn toward it, you know? So a low blood sugar or an injection or things that happen have to happen on a schedule like it someone else's needs can't be more important than that, at that time. Yeah, at least that's the way it was when I was younger. So some of them would say, Well, you know, I think diabetes took stuff away from me, others, I think, would say, I'm talking about them. Like there's like a million, but they're basically are. Some of them would say that it it made them more sensitive to sort of other people's challenges. I think some of them would say it forced them to develop more responsibility, especially at a younger age than maybe their peers. I probably had added to conflict. Yeah,

Scott Benner 47:42
I spoke to someone the other day, who was whose parents put the siblings in charge of taking care of the kid at school. They were all they were all in the school together. And so the older kids had to go give the kid her shots. Yeah. And I thought, wow, that's kind of I actually thought what a brilliant use of workforce.

Tziporah 48:03
I mean, yes,

Scott Benner 48:04
but But you know, you mean, like, I had my I put myself in that position, my little kid off at school. Things Not, not like they are today at some schools where you can, you know, get a 504 plan and be like, Hey, listen, you know, you take care of my kid, or we're gonna sue you. And, and that the parents were like, Okay, what do we have at our disposal? Here? We have other kids in the school. All right. Yeah. You guys take care of your sister? Yeah, I felt like I was crazy. Like, well, brilliant.

Tziporah 48:33
Yeah, I mean, I think we definitely had that in our family. You know, whether it was always like, spelled out like, this is what your job is where it was sort of this is what the moment needs of you. And I imagine, although I don't know for sure, because I was little like, I don't really know what those conversations were in advance, like, hey, how do you feel about this? Can you help me with this, I'd really appreciate it or if it was just, it's dinnertime, give your sister her shot. So you know, I think how you broke her all that stuff probably makes a big difference how you negotiate it with the kids. But I do think there was a fair bit of that and my family.

Scott Benner 49:10
Here's a question for you that that leans into your professional a bit. By the way, how do you practice? Is that like, private from your home from an office? Do you work for an institution?

Tziporah 49:19
It's a really good question. So I actually don't do a ton of clinical work on my own, like I see a few people now. But mostly what I do is teaching and sort of having administrative roles with other larger groups. So I work in a medical school, and I work in a couple of our medical schools, clinical departments, where I'm doing a lot of the training and education that you and I were talking about. But in terms of like my own direct clinical work, I do a lot less of that now than I used to.

Scott Benner 49:48
Well, you seem like you would have been really good at it. I hope Yeah. Well, how much of your job is theoretical? Like, I don't know what I mean. Let's fit You know what I mean? So people change through generations year to year, etc, their sensitivities change. You know, I'm going to tell you right now that I don't think I'm a perfect person. And if you could listen to me on this podcast and see where I probably have deficits growing up and stuff like that, but I grew up in a world where if I misspoke, someone would slap me. Yeah, you know, if my dad lost his temper, he might keep slapping me. At this point in the world, you know, the one of those incidences would have had me taken out of the home even. And yet, it didn't happen to me, like very frequently. And here I stand before you I'm a fairly well adjusted person. And so that's I don't know, I mean, I'm dating myself now. 3540 Oh, geez. My god. 40 years ago, me, I was trying to give myself something in the 30s. But the truth is, that that's not fair. 40 or more years ago, I'm describing to you, right, it's now an unheard of idea in polite society, right? You would not slap your kid in the face in a restaurant for saying something fun, and just try to imagine me as a little kid, no, no malice. I'm just joking around and being stupid. And, you know, sarcastic and my dad didn't get the sarcasm, by the way, you know, fair enough, right? worked all day. And I'm in a, you know, a hard job and he didn't have money. And he came home and like the five seconds that he's got to, like, eat dinner. I'm, you know, I'm being an idiot. And so the way you would have talked to me back then, if you had a therapist job back, then you would probably have said to me, Hey, listen, dad works hard, and he's tired, and he ain't up for your bullshit. Stop it. It's great. Like that might have been, that might have been what you said back then. And now you'd say nobody can treat you that way. Your safety is important, whatever else would go along with it? And my question is, then what's going to happen 40 years from now? Like, what's the therapist gonna say 40 years from now? So is what you're telling me right now? Just theoretical, or is it? Implicit to the time?

Tziporah 52:20
Yeah, I mean, I think it's an interesting question. My, my personal approach with my work is family and systems. So like, even if it was 40 years ago, or now, like, I'm going to be looking at what's the sequence of interactions between you and the other people who are important to you? And how well are they working for what you need to do? So like this part that I'm going to say, sounds kind of theoretical, but I'll make it kind of practical. Like if you say, it's important for me that in my family's home, we have loving relationships, and we look out for one another? Great, you know, like, that's a pretty easy to understand principle. But then it's from that I can say, well, how is you back in and your kid at the dinner table? Consistent with that, like, is that working to get you where you want to go? And I think in that way, I take whatever is theoretical, I combine it with what the people in front of me say is important to them. And then I try to figure out how to help them close the gap. You know what I mean,

Scott Benner 53:16
right? Now that makes sense. It does. I just, I'm not like, I hope I don't sound like I'm belittling what, what you're doing, I think it's really important, and I agree with it. Moreover, I'm just playing devil's advocate, and trying to get to the, to the other side of the idea.

Tziporah 53:33
Because you're asking about, like, how standards change over time? Yeah, like, what's acceptable and what's like, desirable? You know, I gotta say, like, I do follow things like, what a developmental people say, and what do they say is good for kids, and what's good for our brains and what's good for sort of our psychological health, I do look at researchers and scholars and what they are discovering about how we get to be good people, you know what I mean? And so I do try to incorporate those ideas. Most people would say, being in an environment where you're worried you're gonna get slapped is probably not great for lots of reasons. So even if that were to evolve in a different way, in the next 40 years, like I probably try to be thoughtful about the family's values where they want to go as well as kind of what the science says,

Scott Benner 54:23
Yeah, I'm just looking back on my own life. Like, there's probably a level of I'll call it anxiety, but it's awareness. Maybe like, you know, like, If I lived outside in the Serengeti, I'd always wonder if a cat was going to eat me. Like like that kind of like it was sort of like that a little bit like you because you don't say, I mean, when you're a kid, you don't say flippin things. You don't plan to save them, right? Something happens and it fires off, like whatever part of my brain makes me say something stupid. And then I say something stupid. And then the next thing you know, you're like, you're like defend in your head. You know? It and there's nobody even around you just sort of like you kind of get that like, turn over your shoulder feeling like, oh god, did someone hear me say that? But But what about boundaries, though, like? So? What this is making me think about is, do we? Do human beings have limitless possibility? And if you just let them move in the direction that feels right to them? Will they blossom in a way that I can't even imagine? Or if we let everybody just do whatever they want? Will it be the like fall of society? Does that? I mean, that's a big question.

Tziporah 55:33
Yes. Yeah. Right. I think yes, to both of them, right? Like, we are social beings, we live in communities and cultures that have norms and rules for how people should be in that space, right. And it's different. Like I say, to my kid, all the time, different families do different things. What I'm trying to explain to her is that family culture, when she's in my family, this is what we do when we're here, and other people may do something different. So I think there's always going to be that, like, blend of what the people around you who are important to you think is acceptable and what isn't. But it's also true that I think we have limitless potential. So I don't think they're mutually exclusive.

Scott Benner 56:12
It's interesting, because we need a mix of people in my opinion. Right? Right. And but if we all were at Burning Man, 24/7, who would make the cars and make the electricity and stuff like, yeah, right. And, and yet, sometimes people fall into categories, they never break up. My wife's an incredibly hard worker. And she's just always going to be. And I don't think I don't know what I'd have to be able to provide for her to make her go, hey, you know what, I don't work anymore? Like, would it be like, how many millions of dollars? Would I have to put in a pile before she went, Okay, I'm comfortable not working? Or does it have nothing to do with money? Like, I can't even I'm not even sure if it's just how she's wired? Or if, you know, I was talking with somebody the other day about, you know, the pressure we feel to leave art and some money in case I don't know, like, what if she becomes the near to well, and can't afford her, you know, her medications or something like, we want to have a little nest egg for her, but then that makes you feel pressured to leave the next egg for the other person. And we don't make that kind of money. We're just piling up money in the corners. You know what I mean? So, so like, you're working so hard to amass something, just to it's an insurance policy? And in the case of my son, just because I wouldn't want to do one for one and not for the other one. Yeah. But by the time if we're able to accomplish that, by the time we accomplish it, it's gonna kill us. Yeah. You know, and I don't know if we would have thought of it that way if Hardin didn't have diabetes? Yeah. So its impact. You know, you said that impacts, it's hard to know what the impacts are. We were talking about something earlier. And it made me think that even the place you live, right, whether it's an apartment, or a house, you know, your life if you buy it, me moving into the house, I'm in now, in some ways that I'll never understand shaped my life and my children's life. And literally, if we would have bought the house across the street, there would be things about us that would be different now. And it's just it's fascinating to to wonder how those little variables impact, but you're never going to know.

Tziporah 58:27
Yeah, just I mean, thankfully, we'll never know. We could like, probably make ourselves nuts. Yeah.

Scott Benner 58:33
Yeah. We're off the track again. Sorry. How do you manage your diabetes right now?

Tziporah 58:41
You mean, like good or bad? No. What are my tools? Your tools? Yeah, I am on a T slim pump and Dexcom. And, you know, that is working pretty well for me. Overall. I did have, you know, a different pump previously with a CGM. And I was listening to some of your questions earlier about the evolution of those tools over time. I remember being at a diabetes fundraising event a bunch of years ago, and I was talking to one of the other people there who had diabetes, and she's like, Oh, do you use the, you know, the CGM? That was the one that went with my pump. And I was like, Yeah, I mean, sometimes she's like, What do you mean? Sometimes I'm like, Ah, it feels like I'm harpooning myself. When I put it in, I don't like it. I use it sometimes. And she's like, why wouldn't you use it all the time? And I think at that time, I was like, you know, I probably was more ambivalent about a lot of things than I am now. But when I look at it now, and like, this stuff is available to me, it works pretty well. It could always be better, I could be better, but you know, I can't imagine not using it.

Scott Benner 59:53
What What, um, oh gosh, what was I just gonna say, my brains and about harpooning bye bye. In the home, my brain let me down. happens more like, like, like goodness, you should my desk is too cluttered right now. I need to like clean it off, because there's too much that I can see while I'm talking. I know that sounds crazy, but alright, so

Tziporah 1:00:20
you. So I'm on a tandem and

Scott Benner 1:00:24
not my question. Thank you. Do you use the algorithm? Do you use the control IQ? Or they do use a control IQ? Yeah. How do you find that? And was it difficult to do? Because you've been why many so long? Like to me, I wonder if a person who's had diabetes as long as you have looks at control like Q or you know, any of the other like algorithms? And is it like getting into a modern car and letting it lane keep for you and speed up and slow down? Are you like, I'm not letting something else do that? Or are you happy for it?

Tziporah 1:00:56
I mean, sort of both like, I am happy for it to be doing the thing. Like when I go to sleep, and I get up and I'm like, oh, that's like a super flatline, I would not have been able to do that on my own I don't think or if I could have I wasn't doing it before I had that have the system. That being said, there's times when the the automatic car, the self driving car, I'm like, I don't like how you're driving this. I don't prefer that. But then I go in and I try to like mess with what it's doing. And I'm like, oh, no, I just screw the whole thing. And so I feel both really grateful and sometimes frustrated. And also in awe of it all of it. I think it's it probably could be optimized a little bit more for what it is, you know, I wish the target blood sugar was a little bit lower. I wish it was quicker to correct stuff. So those are my

Scott Benner 1:01:50
Yeah, I think I hope, I hope to say I hope they will be one day, I hope that the like the 110, or whatever they are, I think on the part five is 110. I think maybe control IQs like 112 and a half is I think the target or whatever. Hopefully, hopefully, these companies will just continue to innovate, and to put r&d money into it so that they can go back to the FDA with confidence and say, Hey, listen, I think we could let people choose all the way down to 80 or wherever they want, you know. But I mean, it takes so much time.

Tziporah 1:02:24
Well, for sure. And you know, here's the other reality, which you don't need me to point out to you. But like, when I'm sitting with my endocrine team, you know, they when I'm thinking about the story you told earlier about folks who say, Yeah, you're doing great, you're doing great. I know in my mind's eye, what are all the things that aren't great? When you look at what the technology is making possible, like things look pretty, okay, you know, an ANC of, you know, 6.5 is pretty okay, by most people's standards. That being said, like, my variability is higher than I want it to be. Or sometimes I hang out in the two hundreds for days and don't know why and don't really want to think it's about the hormone things that happen when I get older, or whatever else. Like there are still like things that I do that influence the the effectiveness of the algorithm. And in some ways, like, they're never going to know those things as well as I do. I'm always probably going to think I could do better. But in the meantime, having technology that takes a bunch of that guesswork out is like super helpful, because otherwise it's kind of a full time job on top of my other full time jobs.

Scott Benner 1:03:32
I have to be honest, if when I'm talking to people I do I do my very best not to be judgmental, like not to let my own personal like I don't know, like how to put it exactly like I don't I tried to make snap judgments when people say things like, like, like the person who is talking to you, like, you know, is me, but at the same time, if you put me in my personal life, when i There are times when I hear people say like, oh, the doctor told me I was doing great. And I just believe them in my mind. I think what, like you say, I mean, you're, you're unaware of that a nine a one sees not okay. Like, like, that sounds like a lie to me, you know, and then you start getting into the psychological part of it, which is Look, someone told me what it really means to me when they say someone told me it was okay. And I didn't question any further is I got a pass not to think about this thing that is hard for me to think about. Yeah. And you know, it's sometimes it comes out of their mouth blaming, but I never I never hear it that way. Oh, if that makes sense or not.

Tziporah 1:04:37
But no, it does make sense. You know, I think that like, anxiety thing that you were talking about, I think I probably have that hardwired. Like I'm always thinking about what's diabetes doing in the background, even if I don't think I'm thinking about it. And because that's been true my whole life and because I know like better control is just better in the long run, especially, you know, when I already have some complications. That track in my head is like going all the time. That doesn't always mean though, that I make great choices. Like sometimes I just want to eat ice cream for dinner.

Scott Benner 1:05:15
You understand? Just for real, I made myself a waffle the other day, randomly in the middle of the day.

Tziporah 1:05:23
I mean, why not? It's very lunch waffles.

Scott Benner 1:05:26
I'm gonna tell you something now that I'm embarrassed by. Okay, great. This is a safe space. It's not people are gonna hear this. So if it was safe, I wouldn't get so many emails. My brother takes me to a diner one day, my mom, my mom is goes in. My mom has cancer, right? She's doing she's doing pretty good. But we learned my mom has cancer six months ago or so she has to go have surgery. She's 79 years old. My you know, she's so old. And the cancer is so you know, advanced that my other brother flies in from the middle of the country, like just to drive her to the hospital. Because the three of us are in this car thinking it's a fair shot, Mom's gonna die in this surgery. So we, it's COVID. So we take her to the front door of the hospital and basically, like, just push her through in a wheelchair. And we're like, goodbye. You know, like, it just shoved her and we assume somebody was gonna find her, you know what I mean? So, you know, it was it felt like that. So we spent the morning with her sitting around her place talking, you know, trying to not be like, trying not to say like last rites types of things like you like there's I found myself in the room thinking there are things I want to share with mom in case she dies. And I don't want to say them. Because I don't want you to go in there thinking. I heard what that kid just said, I think he thinks I'm gonna die. You know, like, so you're trying to balance that line. We're all talking. We get her in the hospital. And my brother goes, you guys want to go get some breakfast. And so we just went to a diner and we sat and talked for a really long time. I ordered something and my brother turns to me and goes get the chicken and waffles. And I went what he goes, I don't even care what you want or what you think he goes. Just get the chicken and waffles. And I was like, okay, so I ordered it. It was so good. He was incredibly right. Best waffle I've ever had in my life. I then went on a waffle Bender trying to recreate the waffle in my home. I could not do it. So I went back to the diner. While the 18 year old that was serving me was chatting with me. I looked her in the face and I said go in the back. Use your phone, take a photo of whatever the waffle mix is. Bring it to me. I will give you a $20 bill so so she goes in the bag takes a picture airdrops it to me kids are amazing. Like I love like how well they understand technology. I'm just sitting in my head but just pops up. It's like bah, bah, bah wants to airdrop you and I'm like, Well, this is either unwanted porn or a picture of the waffle mix. So I hit no loss in that. So I hit I hit yes. And there it was. She took a picture of it. I literally I handed her the money she's you don't have to give me that. I was like a promises a promise you take this do something nice with it. I always tell young kids the same thing. I'm like, don't buy drugs with my money. And I and, and then I went online. I'm so embarrassed. I had to order a case of it because it comes from a restaurant supply. Oh, yeah. I spent $40 on waffle mix. I'm now $60 into it. As you can see, it comes to my house. I make it it does not taste the same. And I think oh my god is the syrup. So

Tziporah 1:08:54
I go back, tell me you went back. Yes,

Scott Benner 1:08:56
I did. I'm not giving up now. So I went back to the diner. And I said, Can I just have a little bit of that syrup. And I got some of it. I went home. I made another waffle. I put it on. It was better, but it wasn't exact. And I thought that's not possible. I bought the mix. I have the syrup. I'm whipping the butter. Like what's wrong? And I can't figure it out and I can't figure it out. And then one day I realized it tasted really good because I was sitting there with my brothers. And I'm never gonna recreate that that way. And now I don't want the goddamn waffles and I have all this mix of I don't know what to do with it. I'm gonna start giving it away as gifts. But anyway, that was that the it took me like months. This is not a story that happened over a couple of days. I wasn't in there every day like going alright, now give me this part. It literally took me once months and months to build it up. And then that's what I figured out it did The way those chicken and waffles tasted, had nothing because I then went back and ordered the chicken waffles again and sat there by myself at lunch and ate them. It wasn't the same. Yeah, so I don't know why I told you that. But, you know,

Tziporah 1:10:14
there's you said it was going to be an embarrassing story that's actually really touching

Scott Benner 1:10:18
story but the point about I mean, I was, I mean,

Tziporah 1:10:20
you're stuck with a ton of awfulness. You have no idea. I'll send you some. I should give it away. Online. Like contest of half opened, half consumed waffle mix, is that it

Scott Benner 1:10:35
is really good. And by the way, the syrup did upgraded significantly. But what I figured out was that restaurant syrup is poison. Like, it's not the they're not giving you like maple syrup. They're not good. It's just, I mean, if there's a way to put high fructose corn syrup and something twice, they figured out how to do it. Oh, yeah. And you could only buy it by the gallon, which makes it? I did. I want to say I did not buy a gallon of syrup.

Tziporah 1:11:02
I just, I wouldn't buy a case of gallons. I took

Scott Benner 1:11:05
a tumbler to a restaurant and strong armed like a 19 year old kid and filming it.

Tziporah 1:11:11
It's actually sort of amazing. You haven't gotten arrested in this story.

Scott Benner 1:11:15
I'm delightful while I'm doing it. Yeah. And I'm throwing money around. So you know? No, 20 year old kids gonna be like, saying again, you're gonna give me $20 To do what looks like okay, that's fine, you know? So anyway, and I have not been kicked out of the restaurant. But yeah, I don't know. There's anyway, my mom I should say, zipped through the surgery. I astonishing LEE Well, she had a full hysterectomy, a tumor, the tumor the size of a grapefruit on her ovary. And, and the day after the surgery. I'm on the phone with her because I can't go Syria. I said, Mom, how's the pain? And she goes, Oh, I'm good. And I was like, Oh, they got you all loaded up on stuff. And she goes, I took a Tylenol and ibuprofen and I thought, oh, people are tough, you know, tough lady. Ibuprofen, Tylenol, I mean, cut from her sternum down, and a bunch of stuff removed. She goes to rehab, rehabs herself for a week, goes into another place, pulls herself together over the next month starts chemo. She's five treatments into six chemo treatments right now. And she's, she's well. And that's it. I'm going to when she's done, we're gonna I'm gonna take her to that Diner

Tziporah 1:12:29
for chicken and waffles.

Scott Benner 1:12:30
I don't know if that's what she wants, but that's what I'm getting.

Tziporah 1:12:33
What if they can't even make the waffles because somebody bought all

Scott Benner 1:12:37
that's possible. I went to a restaurant supply house at one point and snuck in looking for the

Tziporah 1:12:48
Chairman, I'm gonna give you that I

Scott Benner 1:12:50
was on a bit of a. I don't know, like, I have no idea Holy Grail. It really was and then the other day Arden's like you want to walk on like I'm completely sick of waffles. I never want a waffle again. So I was making waffles taking one bite of them and throwing them away. Before

Tziporah 1:13:06
you were a waffle connoisseur, I mean, that's the thing. That's what you do. Now when you're fancy. I don't

Scott Benner 1:13:10
I don't know how hard it is to be a waffle connoisseur. I've come to realize after I'm eating them, they're just flour. Anyway, what have we not talked about that you wanted to? Anything?

Tziporah 1:13:26
I mean, probably lots of things. But

Scott Benner 1:13:29
why did we have to do this orally?

Tziporah 1:13:32
Cuz I like have a job both days. I mean, whether I'm working from home or working in one of my offices like I'm, I'm generally like pretty JAM PACKED from as early as 630 or seven all the way through to the evening most days. So

Scott Benner 1:13:48
I am often baffled that people are you able to do this? Yeah, I really am. Like I never asked, but there's the part of me that's like, why are you able to do this at 11 o'clock on a Wednesday?

Tziporah 1:14:04
So I have to tell you, you're the first invitation I got was for nine o'clock and I'm like, Oh, this will be fine. It'll sort of be like the start of the day. And then my one of my workgroups was like, Okay, we need to have a retreat from eight to 10. I'm like, Oh, I've got my recording. I've been waiting to do this. And then you happen to reach out to say, hey, I need to move and I was like, Oh, that's cool. Perfect. Yeah,

Scott Benner 1:14:26
I I took a week off from recording so I could go be with my son. And

Tziporah 1:14:31
as you should. Yeah, I'm going to try to enjoy some waffle moments. More

Scott Benner 1:14:35
fun. Yeah, maybe I should take him for a lawful. There we go. Two more questions. If you don't mind. How short Are you?

Tziporah 1:14:44
Like in real life or on my license?

Scott Benner 1:14:46
I in real life if you don't mind? Like for

Tziporah 1:14:49
nine ish and a half? At No. Three quarters.

Scott Benner 1:14:53
How did you get that baby out of you even?

Tziporah 1:14:56
Oh, yeah, not easily. Just gonna say aid? Not easily.

Scott Benner 1:15:01
That's why you're or other people in your family. Similarly, yeah,

Tziporah 1:15:05
I am not the shortest of my siblings. I'm not the shortest.

Scott Benner 1:15:09
No kidding. Yeah, I have friend people I love who the shortest the three shortest people I've ever met my life. Like she's short, she married a shorter guy. They had a short kid. Like when they're standing next to each other. It's like, it's like watching Tom Cruise act. When they're all sitting next to each other. You can't tell the minute one of them breaks off and goes next to somebody else. You're like, Oh, my goodness, is Are there limitations? Like, does your height hold you back from things?

Tziporah 1:15:39
Not really. No. I mean, it's interesting. I from time to time, I've had people say, How do you reach your dishes and like, I just put them where I can get them. Or I will tell you, you know, I'm in my 40s, I will still climb a grocery store shelf to get something that I can't reach. Rather than ask someone to help me. In my own kitchen, I will use other implements to get things out of cabinets. Like I'll grab a spatula and you know, get the flour from the top shelf or whatever. But mostly my life is set up in a way that's navigable for me for you. And it doesn't occur to me that I'm short until I stand next to someone like oh my gosh, you're short. I'm like, oh, yeah,

Scott Benner 1:16:19
that happens. I think that happens to everybody. I say a lot. Like I'm taller than most of the people I meet in the course of a day. And the minute someone's taller than me, I recognize that I am not tall at all. Yeah, it's interesting. Did you marry or I'm sorry. Are you married? Yeah.

Tziporah 1:16:32
Yeah. But I will tell you too, though. Just one other thing. I do. Look people in the eye a bunch. So I think that's partly why it doesn't really occur to me, you know?

Scott Benner 1:16:42
Oh, do you notice people's double chins more? Think about that, in the course of your day for me.

Tziporah 1:16:50
Well, legit, I'm thinking about my own, which is like a very unfortunate reality. But thank you for that.

Scott Benner 1:16:57
If I had if you gave me $10,000 Right now, I'm putting this out to the people that listen, if you guys were told give me $10,000 and told me I didn't have to use it for any real thing. I'd have my double chin like surgically removed. I

Tziporah 1:17:13
mean, it's it's the waffles.

Scott Benner 1:17:15
It might be not the right or do you think I could just stop the waffles and Miko backwards.

Tziporah 1:17:21
I can't say for sure. I

Scott Benner 1:17:23
just noticed I saw him I saw a person from a camera angle of lower and I recently and I thought oh, they look different from lower up than they do from my eyeline. And that's what made me ask you if you just do see people, I wonder do people look different to you than they do to other people because of the angle?

Tziporah 1:17:45
I mean, we'll never know. No, we won't. But like, most of the time, like I don't like have meetings from standing next to people looking up at them. Otherwise, I've had like a I would have like a serious neck problem. I'll tell us like 540 He

Scott Benner 1:18:00
must be so happy he met you. He must feel like a giant right. Is your daughter daughter shorter?

Tziporah 1:18:08
I mean, she's still for the moment shorter than I am. She'll probably be like five feet.

Scott Benner 1:18:13
Okay. Yeah, I saw Arden last night in a video. She's doing something for school and they had to record themselves dancing so they could. It's not important. And she's in a video with a guy who's probably like six, one and Arden's five, seven. And then there's another girl in the video who's five one and she looks like their child. Yeah, it's really interesting. Yeah, that's real. Yeah, no kidding.

Tziporah 1:18:36
Always front row for the class picture. Always.

Scott Benner 1:18:39
There she is, right there. Did you name your kid something different? And are all your siblings? Do all your siblings have like, more different names as your name means something? There's a lot of questions in there.

Tziporah 1:18:52
Oh, I thought you wanted to say like, did I name her Medtronic or something? I did not. Do you mean like, like, Jewish names?

Scott Benner 1:18:59
Yeah, I mean, do you do like to all your brothers and sisters have names that are more reminiscent of yours that have mine?

Tziporah 1:19:07
Yes. Yeah. So all of my siblings have first and middle names that are from the Old Testament, which is actually kind of interesting. I didn't really grow up in a religious family. But my daughter does not have an Old Testament name.

Scott Benner 1:19:21
Okay. That is interesting. So not particularly religious. But your parents went that route. Yep. Yeah. Did they feel like they had to

Tziporah 1:19:31
really know. I mean, mine is like not a super common name either. And I'm like, Okay, well, I guess being the six out of seven like you run out after a while, but um, you know, it's still pretty unique

Scott Benner 1:19:43
do Jewish faith sometimes, like the first letter has to match somebody else?

Tziporah 1:19:50
Yeah, so all of us are named for somebody. So I'm named after my mom's favorite aunt who didn't have my same English name, but thankfully, I don't have her inclusion. The per Yiddish name was vague Allah which means bird in Yiddish. Okay, so that's how I got this name, which means bird in Hebrew.

Scott Benner 1:20:09
Oh, you listen to this podcast, right? Yeah. How bad is my Yiddish?

Tziporah 1:20:15
I mean, like, what's the scale?

Scott Benner 1:20:16
I don't whip it out often, but like, I know, I know some phrases. Yeah. Yeah. I mean, is it cringe worthy when I say it? Or no,

Tziporah 1:20:23
no, no, no. And I'm also not fluent. I think that's a whole other show. But

Scott Benner 1:20:29
I gotcha. I don't know. I there's some of those words that I find delightful. So actually, the words you just said, for bird, I thought it meant something different.

Tziporah 1:20:42
Well, it can mean that's the thing. It could just mean, the thing about language is that it gets like appropriated for other things, but

Scott Benner 1:20:51
excellent. Yeah, that's interesting. Okay. Your episode's gonna be called Rainbow connection.

Tziporah 1:20:56
I mean, I hoped it would.

Scott Benner 1:20:57
I mean, there's really that's all we had. I mean, that's fine. Yeah. I know. I thought it was like tight. I was like, Oh, excellent. That's gonna happen. That's awesome. All right. Would you hold on for one second for me? I appreciate you doing this. Absolutely. Yeah.

Well, first, I want to thank Sephora for coming on the show and sharing her story and being so Chitty, chatty with me. I had a great time. I also want to thank Ian pen from Medtronic diabetes, and remind you to go to Impend today.com To learn more about that insulin pen that has all that functionality that you want. And let me thank our newest sponsor, athletic greens, makers of ag one, head over now to athletic greens.com. Forward slash juicebox. To get started with ag one. Ag one is a small micro habit with big benefits. It's one thing you can do every single day to take great care of yourself.

Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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#772 Bold Beginnings: Journaling

Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.

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

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

Scott Benner 0:00
Hello friends and welcome to episode 772 of the Juicebox Podcast.

On this episode of The Juicebox Podcast Jennifer Smith and I will be giving you another episode in the bold beginning series. Today we're talking about journaling, which, though I got confused a little bit isn't about writing down your feelings. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. The ball beginning series begins at episode 698 and includes honeymooning adult diagnosis terminology part one into fear of insulin the 1515 rule, long acting insulin target range food choices Pre-Bolus carbs stalking, flexibility school exercise guilt, fears, hope and expectations, community and today's episode journaling. If you're looking for that list, it's available at juicebox podcast.com. Or on the private Facebook group in the feature tab. The list actually has like the episode numbers with it, which I guess I could have just said but I felt like I had to rush to get you know in before the music ended. Anyway

this episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes. If you want an insulin pen that has much of the functionality that you find with an insulin pump, you're looking for the in pen, Learn more at in pen today.com This show is sponsored today by the glucagon that my daughter carries G voc hypo penne, find out more at G voc glucagon.com. Forward slash juicebox. Well, Jennifer, we are so close to being finished with the bold beginning series. Yay, we are going to record today. What we have left is journaling. And then we have supplies like technology technology, durable medical stuff, which I thought was a great idea talking about how to people actually get these things, a little bit about insurance. And then we're going to talk about carb guidelines and food impacts. So we only have four topics left. Yay. Yeah, I feel I feel like we've accomplished something we have how many months? Have we been at this? Do you think?

Jennifer Smith, CDE 2:40
I don't even know. Honestly all have my month they run together? And I have no probably three. I feel like we started like summer ish, right?

Scott Benner 2:52
I'm gonna look, because I'm actually interested. I'll figure it out while we're talking. Cool. Okay. So can I just admit something right here? Sure. The list has been in front of me for quite some time. And journaling has been at the bottom. And the entire time I thought, well, people want to talk about writing their feelings down. Then I thought, Okay, if that's what everybody said, we'll do it. And then of course, today looked at it and I thought, Oh, that's not what they're talking about.

Jennifer Smith, CDE 3:24
That's what I was wondering is like, what and when you said the name of I was like journaling? What kind of journaling? I journal and it's doesn't really reflect on diabetes, but sometimes it does when I'm journaling about that. But that's not in my journal. No.

Scott Benner 3:40
I was so disappointed with myself. When I started reading, I say, Oh, they're talking about tracking food and doing a food journal and a carb journal and a Bolus journal, journaling diabetes stuff, and I thought it never occurred to me because, you know, I don't do that. But I go, but I do see people's, you know, people's comments telling me that for I think certain, I guess certain brains, right? This is probably incredibly important. So the first comment I have here is I counted carbs and tracked it in a food journal like crazy for almost a year, I would record everything my son ate and what happened to his blood sugar afterwards. This was kind of helpful to distinguish patterns. It was very stressful when things were not working correctly. But oh, here we go. I would never food journal again if I knew better.

Jennifer Smith, CDE 4:31
Huh. And that, and I see I don't see, as if like, Well, gosh, why not? It's just sort of like, I think everybody again, you said personality. I think there are some people who can collectively see something happening. They take it in and it gets filed in that place that they know they can pull it out and use it and they don't have to write it down. However there are people in terms of like kind of learner, along with personality, there are some people their learning style is they get it once they've written it down. If it's written a couple of times, it's then in that place in their brain that they can draw from, and they probably don't have to write it down anymore. Right?

Scott Benner 5:17
Yeah, I wonder if the message after we get through this is going to be that if this is how your brain works, this is probably amazing. And if it's not, it might feel like torture.

Jennifer Smith, CDE 5:27
And I think the other piece to it too, is people who have a little bit more consistency in what they do, and probably would benefit from this, regardless of personality or learning style. They're the they're the person or the family that could get a lot out of, we have soccer every Monday, Wednesday and Friday, we always eat this for breakfast, this for lunch, and then dinner is these different meals. But there are like five of them, great journalists figure it out, you will see patterns, I guarantee. But the person who has a very random schedule, and you know, I bring up nurses sometimes, because the nurses that I've worked with often have variable scheduling, they might work overnight, and then they might be off for two days. And then they might work three shifts in a row, different times of day, and then they might be off for another two or three days in a row. While you might get something out of food evaluation, you may not get much out of time of day evaluation, because there's so much that's variable day to day for them. So I think, you know, you kind of have to pick and choose, what are you also trying to figure out what is journaling? The 1000 things that might happen in your day, you're gonna get overwhelmed with that

Scott Benner 6:56
you're not a computer, right? Like, you can't, no, I can't write down so much data that you can't compile it and make sense of it. But what you're saying makes a lot of sense to me, if you have a more repetitive life, you'll probably more quickly be able to see the patterns, right. And if you have an incredibly variable life, what you might end up with is a lot of numbers and lines and dashes that you can't make sense of

Jennifer Smith, CDE 7:18
correct interest. And sometimes because it's your own data, you sort of get lost in it, right? Sometimes it it helps to have an unbiased look. Which means then that hopefully you have a good care team that you can go to and send data to for evaluation saying, I don't see anything here. Can you please try to pick this apart? And you know, when I'm looking at someone's data, sometimes I say, I don't know, it looks like there are a lot of variables in the picture. So let's try this. And this to start out with?

Scott Benner 7:49
Well, that's it really important to bring up because, I mean, in full, full transparency, probably a half a dozen times a year, I send something to Jenny and say, I see this, am I right? Because I'm living it and watching it. You're You're too, right. It's micro macro, like sometimes you get too close to it, and you can't see the big picture anymore. And often, like, I wanted to make this switch a couple days ago, and I said to Arden Hold on a second, I'm gonna check with Jenny. And she was Do you not know if you're right or not? Which I don't think like, filled her with a ton of confidence. And I was like, No, this is the right thing to do. But let's just tell somebody else first who, who thinks about it the same way so that we don't start turning a bunch of knobs and get too far away from where we are because we're so close right now. And she's like, whatever. And it's like okay, by the way, just to digress for half a second. Did you hear the episode that she did recently?

Jennifer Smith, CDE 8:46
I listened to I think I got through three quarters of it.

Scott Benner 8:49
Did you get to the part where she wouldn't give you credit for the oat milk ice cream?

Jennifer Smith, CDE 8:55
I didn't get to that part. Although I have seen many comments about what's this ice cream. Jenny recommended and I was like, it's tasty. I guess the biggest reason was when I recommended it for you guys was trying to find something that was comparable in taste that she wouldn't be like, Oh my God, this crazy lady recommended something that's it's horrid. It is totally not ice cream to me. Right?

Scott Benner 9:17
How long is the hair on Jenny's legs? If she thought I was gonna eat this? Yes. But um, but she just ended up really liking it. So I was like, I was like, Hey, give her credit. She goes, I'm not involved in this thing you do? It was like what do you anyway you have to get to it is hilarious. Okay, so the next comment here is, is super interesting because it goes the other way. Getting a scale and a notebook was huge for our family as well as staying as organized as possible was we had a little makeup. Oh, we had a little makeup organizer set up on our counter in the kitchen with everything we needed. So it was very easy to reference. Then, with a notebook right in front of them. We would write down all of our carbs and in insulin doses times, etc. And that really helped to make sure we didn't both accidentally give her something Oh, that's interesting, a little redundancy too. And reference back to the book, if something weird with her blood sugar happened that we could figure out better after seeing, Oh, what was going on with the insulin versus the food that she ate, get a good scale to help with Clark County.

Jennifer Smith, CDE 10:21
And that's their, you know, in terms of the whole idea of journaling, there in lies, I think this person brings up a good, a good fact that sometimes actual physical written journaling, you can flip back to easier than the databases upon databases that allow you to do the same thing in an app. Because sometimes the apps become cumbersome to try to track through and page back and forth between one day note and then trying to find another days of note, where if you haven't just written down, you can kind of easily page back and forth. I know a lot of people use like the sugar mate, because partners or caregivers or whatever, you can see what every person is logging. And then you can see in the day, and you don't really have to worry about that redundancy, or Oh, my goodness, did I give it did somebody else give it what was done? But yeah, I mean, there, there are multiple ways to journal or I guess, record diabetes, if you will, sort of like texting diabetes, but recording, if you will.

Scott Benner 11:29
So when there are plenty of times throughout the weeks, where my kids look at me funny, because I'm like, well, if I'm going to do this, I have to go upstairs to my computer. And they're like, you can do it on your phone. And I don't want to, I don't want I don't like that. And they they're like you're old and I'm like II say whatever you want. Like I want it big. I want it in front of me. I want to be able to look at multiple things at the same time. I don't want to be flipping back and forth. I take that point. Oh, well, it's interesting. He I would I would be better with it. Interestingly enough, I'd be better with it where I could just reach back three pages and go okay, Monday. That was that would be easier for me.

Jennifer Smith, CDE 12:07
Absolutely. I mean, I did that. And I'm very glad. And I recommend this to a lot of the women that I work with, through pregnancy is I journaled my entire first pregnancy, the whole thing, all the foods every day, day and time of change of insulin doses and everything that I noticed, it was enormously beneficial. When I was pregnant with my second, okay, enormously beneficial, because I could go back and say, Well, this time of the first trimester, this is about what started happening. And then it didn't feel as crazy. Right with what I was noticing. I'm like, No, this is normal. I did do this last time, or I did see this last time, or I did stop doing this type of thing last time about this point. So

Scott Benner 12:54
when something that's so out of the ordinary happens, even though it's happened to you in the past, it still feels very out of the ordinary. And it was helpful to go back and say, Oh, no, this this happened the last time. Yeah, right. That's right. Especially

Jennifer Smith, CDE 13:06
because there were a number of years before between my kids. And so, you know, memory lapses entirely.

Scott Benner 13:17
So that's nature's way of allowing you to get pregnant again. I think.

Jennifer Smith, CDE 13:20
There you go. I guess yes. You don't remember all of this stuff you do, right? Oh, let's do it again.

Scott Benner 13:26
You remembered it, you'd be like No, thank you. That's okay. Once enough.

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Makes sense? Okay, here's the one from somebody that says, Oh, hold on a second, while I mute my phone. Like I've never made a podcast before. Sorry about that. With everything overwhelmingly journaling. Journaling saved my tired brain from remembering everything. Okay, so while everything was overwhelming, journaling saved my entire brain from remembering everything. I keep everything in there food, Bolus timing, dosing, carb counts, questions, to ask questions to ask it and appointment, they use this thing like a Bible, then. Okay.

Jennifer Smith, CDE 16:27
And that is good in terms of connections with your care team. Because if you do on a day have, gosh, originally I should ask about this isn't a question that needs to be answered now. Then reach out now, if it's a question that you're going to bring this journal in, in a month or two months when you have your next visit, because they were just things you wanted to go over. But I really not as necessary to get an answer to right now. Then you don't have to remember all your questions. Yeah.

Scott Benner 16:54
My, my mom just moved from the East Coast to actually to her Jenny has to live with not to live with Jenny, but to live with my brother. Not that my brother lives with Jenny, but they're in the same state anyway. And my brother has been a little overwhelmed. And we had a conversation yesterday, where I said, Listen, you've been lucky this far, you haven't dealt with a lot of health issues. And, and he's like, Well, there's phone calls, and I'm talking to doctors, and they don't do anything you want them. You know, you have to ask three times. It's like, yeah, that's like, that's how this is. So. So I said, look, make a list. And I said, because if you think you're just gonna walk in that doctor's office, and remember to say everything that you need to say, it's not going to work like that. I said, you have to have a list in front of you. It's interesting how, you know, the one thing I'm realizing, as I'm listening to people talking about how they're journaling and listening to us talk about it, is that I would have benefited from it. It's just that my brain doesn't excuse me, I don't know how to say this actually. But like my my printing, my penmanship is is horrendous. Like, I don't mean not, you know, worthy of being hung up somewhere. I mean, I write things down. And then I didn't know what they say. Yeah, I have things written in front of me from yesterday. I don't know what they say anymore. And

Jennifer Smith, CDE 18:16
it's kind of like Dr. chicken scratch really,

Scott Benner 18:19
it's like, it's like something I'll tell you. And, and I wonder how much of that thwarted me from ever trying it because I have I have written things down before I'm like, this is useless. I don't know what this says. I've tried slowing down and writing slower. It doesn't like I can't do it. Like the first three letters and then I get bored like come on, let's get this out. And I can't get back to it. So

Jennifer Smith, CDE 18:45
um, had you had at you know, I mean, Arden was diagnosed long ago, long enough ago that there really weren't the tracking tools that we have now right? Where it takes your handwriting out of the picture it does allow you to keep it all in an app or again or someplace that you can actually read what you wrote down

Scott Benner 19:06
that is why I like being at a computer because I can go back and actually see it also might make a good point that my my book back then might have said woke up screamed into pillow cried. Yeah. Yeah. Chased Arden around room with needle went another room screamed and pillow. I don't know how helpful that would have been. Exactly. I guess the tools and the data coming back really is more modern day.

Jennifer Smith, CDE 19:32
It is definitely I mean, even the ability to download, you know, a pump or a simple glucose meter or have the CGM data drive right into a database that you can look at online or that you can get notifications. Hey, clarity tells me that I did this much better this week compared to last week, right? I mean, that kind of information. Just it wasn't there. Yeah.

Scott Benner 19:58
So I use that that data like in clarity. For example, when I'm returning Arden's blood sugars for something, I move everything to one day, I want to see just what happened today. Where was our average? What was our range today? And then as those numbers come to where I want them to be, then I open it back up and see, am I keeping it for a week? I am I keeping it for a month? Good. And then I kind of build off of it that way.

Jennifer Smith, CDE 20:22
Yeah, those overlays or comparison reports, especially just, you know, talking about like a CGM. From a one point of view, like you said, when you make a change, and you're wondering if it's made enough of a difference, I always start with just compare a seven day, you made a change on this day, look seven days out, do things look better compared to the previous seven days before you made the change? And see, so you can definitely tell whether or not more stuff needs to be adjusted,

Scott Benner 20:52
I cheat a little bit to like, I'll look at seven days and just pick a number. We'll say like, I don't know, variability is at 28%. And I'm like, Okay, over the last seven days, that's great, then I expand it to 14 days. And I don't even go back and look, if the number goes up, then I go, Okay, well, the week before, it wasn't as good. And if the number stays still or goes down, I go. Okay. Now I have some consistency over two weeks. Right? Yeah. Oh, it's interesting. The last person just says, please get a good scale to help with carb counting. I don't know how to comment on that. Because, I mean, that's a burden more for me, but I see the value,

Jennifer Smith, CDE 21:28
there is value. And I think, again, I still use a food scale, but more specific to foods that they never have a label. They're real foods like butternut squash, or acorn squash, or apples or M kind of, you know, those summer into fall kind of vegetables and fruits, or anything that you might get from the grocery store any time of the year, that just does not come with a label, you can get a lot from using a food scale, and you know, a carb factor. And many foods scales now, if you get a smart one actually come with the carb factor already in them. And all you do is put the piece of food on the scale, put the code in, and it gives you the amount of carbon that portion that you're going to eat.

Scott Benner 22:18
Oh, so yeah, cut up apples as an example. I throw it on there. I tell the thing. This is apples, it already knows what the carb factor is for me personally. Tells me for that

Jennifer Smith, CDE 22:29
food particular. Yeah, yeah. Yeah, like I, one in particular, is it eat smart products.com is the website. It's a great food scale, you want to look for the nutritional kitchen scale. It's like a square like clear glass shape. But it comes with a catalogue of about 1000 foods that each have a code. And when you look at the code, then you put that in put the let's say Apple is 205. I only know it because I really like apples this time of the year. And I use it because they're all different shapes and sizes this time of the year. So you put the apple on and it pops back. This is how much fiber it has this is how much carbohydrate in this portion that you're going to eat. And if you are the precision kind of person, then maybe that's what makes the big difference for you. And if it does, it could be a huge benefit for you. Again, I mean, I don't use it for things that might like beans that come in a container that I can look at. I know what a half cup looks like. And you know, I've been doing this long enough that if I don't know what a half cup looks like, I'm in trouble at this point.

Scott Benner 23:37
Okay, so I think the takeaway here is that different people are going to respond well to different ideas. But that's keeping track of something somehow is is a good idea. You don't I mean, even look, as I joke, I don't keep track of anything. Arden left for college, the last thing I did was open up our loop app and screenshotted every page of our settings, and I AirDrop them to myself. And we got we got there and we made changes, and I did them again. And over the last couple of weeks that she's settling into school, I refer back to them a number of times. So

Jennifer Smith, CDE 24:07
Right. And in the beginning, I think the good thing about some tracking, especially if you do have a honeymoon period, the good thing about tracking early is that you'll start to see those differences that cue you in to say, this wasn't just a bad day, right? This was two days or three days I have much more sensitivity or much less sensitivity. And so you know, then something needs to be adjusted in terms of your doses, probably. And you can go forward in a much more precise manner rather than the randomness that creates more of the roller coaster up and down.

Scott Benner 24:44
Okay, well, I'm glad we talked about this then thank you very much. Thank you. Okay, let's see what is next. So that was journaling. I honestly can't read my own writing. It's embarrassing.

Jennifer Smith, CDE 25:00
There was, there was a physician when I was doing my clinical internship, which I had actually done I had done at a hospital where I was already working. And so I knew the doctor, but he had, like, literally, I don't, I would call it chicken scratch, it looks like somebody put ink on chickens like feet, and they just danced around on the page. And we got to the point of realizing some words looked the same. And then you could end up figuring out that the chicken scratch was like the or it's catchy, because it looked the same note to note, so then you could figure out what he had actually written. But, man, yeah, almost

Scott Benner 25:46
impossible. No, I, I looked down at my own writing. And I was like, it feels like someone else wrote it. I have something in front of me right now. Oh, I know what it is. I was speaking to someone from Australia yesterday. And she said, we are in a potty. And I wanted to remember to bring it up later. Because she had she was talking about peeing on sticks to get her blood sugar when she was younger, because she had had a long time, right. But as I looked down at it now, it looks like it says Lee

Jennifer Smith, CDE 26:19
Lee and Patti maybe

Scott Benner 26:20
on poult. Good. Like, I don't know what it's, I don't know what it could say Q. Like cu e, it could say, definitely not wait because the first loop of the w goes down comes up and it goes right into the E. And then there's another E, the two E's don't even look the same. You can't even tell the second eat and the first day are the same letter.

Jennifer Smith, CDE 26:52
I hope you never wrote like nice letters to your wife when you guys were dating because she was finally I was talking about my hobby telling them that he likes me. But I really don't know,

Scott Benner 27:04
a greeting card for Kelly. I sometimes print it out first and then go and I copy it. Because if I just start writing, I hand it to her. And later she goes, Hey, what does this say? And then I'll just I just read it to her or the or I can't read it. And I just go well, here's here's the intent. Like I started. I don't know if it's terrible. It's really I don't I it's my whole life. My printing has been absolutely horrible. And my cursive is not anybody writes that way anymore. But

Jennifer Smith, CDE 27:32
it's it's horrendous. And they don't even they don't even teach it anymore.

Scott Benner 27:35
There's a lot of things they don't teach anymore. Some of it. I'm confused by like typing.

Jennifer Smith, CDE 27:40
I'm amazed at the the use of iPads in school for young kids. It's the hunt and peck method of finding letters to spell things. Yeah. And I told I told Nathan recently, I was like, We need to get it. We need to get a keyboard to hook up to our home iPad. And we need to teach them how to type. Yeah, because for the year, they're gonna hunt and pack their entire life.

Scott Benner 28:10
That was years of their life. You know, watching a person text who's proficient at it is like I watch Arden and her thumbs are just like flying. It's and they don't make mistakes. It's fast. It's fascinating, you know, so I had to teach myself to type to write my book. I did, I did not know how to type. I took typing class. I did it for like a day. And I'm like, I'm dropping this. And I dropped it and I left. I couldn't do it. So when I had to write my book, I sat down. And first I typed looking, and then I would practice not looking. And then as the weeks went on before I knew what I could type.

Jennifer Smith, CDE 28:49
Yeah, I mean, that's how they teach you. It was a mandatory we had to take it as freshmen in high school. It was a mandatory, I still remember Miss Adelman, that was her name. And we had word processors. No, I'm like aging myself. We had word processors A S S, like that's what we did for the whole class. By the end you're like, oh my gosh,

Scott Benner 29:13
Kelly had one in college where there was this little matrix LED screen in front of her that may be held like 15 or 20 characters and you would type and they would come up in front of you. And then they would disappear off to the left. And when you got done you hit save and it was on like a floppy disk if I remember correctly, and then you had to put the floppy disk in and hit print. I mean you didn't even you couldn't even go back to see if you made a mistake or it was and that was like high quality back then. Think about that the next time you complain.

Huge thank you to one of today's sponsors G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGLUC AG o n.com forward slash juicebox. If you're looking for an insulin pen that does more, check out the pen from Medtronic diabetes at in pen today.com. And don't forget to fill out that survey for me at T one D exchange.org. Forward slash juice box

if you're enjoying the Juicebox Podcast, please share it with someone who you think might also enjoy it. That really is the best way to help the show, grow, thrive and continue. Tell them to look in their audio app like Spotify, Apple podcasts or Amazon music. If they don't know what that is, send them over to juicebox podcast.com Or take their phone from them and show them yourself. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

Test your knowledge of episode 772

1. What is the primary function of basal insulin?

• To cover meal-time glucose spikes
• To manage blood sugar levels between meals and overnight
• To correct high blood sugar levels immediately
• To eliminate the need for monitoring

2. How often should blood sugar levels be checked in a newly diagnosed patient?

• Once a week
• Before and after each meal and at bedtime
• Only when feeling unwell
• Once a month

3. What is the significance of carbohydrate counting in diabetes management?

• It helps in accurate insulin dosing
• It has no impact on blood sugar levels
• It is only relevant for type 2 diabetes
• It should be avoided

4. How can stress affect blood sugar levels in diabetic patients?

• It lowers blood sugar levels
• It has no impact
• It raises blood sugar levels
• It depends on the individual

5. Why is it important to stay informed about new diabetes research and treatments?

• It can improve management strategies and outcomes
• It is only relevant for healthcare providers
• It has no impact
• It is unnecessary for most patients

6. What role does physical activity play in managing diabetes?

• It should be avoided
• It helps in managing blood sugar levels
• It complicates diabetes management
• It has no role

7. How should insulin doses be adjusted during physical activity?

• By ignoring blood sugar levels
• By increasing the insulin dose
• According to the intensity and duration of physical activity
• By avoiding physical activity altogether

8. What is the best way to handle a low blood sugar episode?

• By ignoring it
• By consuming fast-acting carbohydrates
• By stopping all activities
• By drinking water

Submit

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#771 Meet The Flintstones

Katie's child has type 1 diabetes.

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

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends and welcome to episode 771 of the Juicebox Podcast.

On today's show, I'll be speaking with Katie she is the mother of a child with type one diabetes who is more newly diagnosed. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're a US resident who has type one, where is the caregiver of someone with type one, all I'm asking you to do is go to T one D exchange.org. Forward slash juice box and take the survey. I'm actually asking you to complete the survey. But that's nitpicking really take the survey AT T one D exchange.org. Forward slash juicebox. Do something good for yourself for people living with type one diabetes and for the podcast. If you're looking for the diabetes Pro Tip series, it begins at episode 210 In your podcast player, but if you want a whole list of them, you can find those episodes listed out on juicebox podcast.com diabetes pro tip.com. We're in the featured section of the private Facebook group Juicebox Podcast type one diabetes.

This episode of The Juicebox Podcast is brought to you by Omni pod five, the automated insulin delivery system that's tubeless and works with the Dexcom G six, the one you've been waiting for. It's available right now@omnipod.com forward slash juicebox. today's podcast is also brought to you by touched by type one, if you go to touch by type one.org right now and click on the Programs tab. You'll see the upcoming events. Right now in October. There's a family Halloween party coming up, in addition to the fall dance program. And then of course, pretty soon in November, dancing for diabetes showcase will be here. I'll be telling you more about that soon. But for now, fine touch by type one at touch by type one.org. We're on Facebook, and Instagram.

Katie 2:21
Hi, I'm Katie. I'm a mother of a child that has type one diabetes. were diagnosed in August. I kind of like to say now part time job of being somewhat of a parent, Chris. And I guess that's about it.

Scott Benner 2:37
Katie, it's so interesting. We were chatting before this about nothingness. And you never fought. I don't know if you know, futz because you're in, in North Dakota, but you never messed with the wire on the microphone. And then you started talking on the podcast and you're moving it or something like, are you? Is it touching your hair? Or were you touching it unknowingly? or talking with your hands or something like that?

Katie 2:58
I talk with my hands constantly.

Scott Benner 3:00
So don't touch that microphone again. Okay.

Katie 3:03
I will do my best. Only do it 1000 times.

Scott Benner 3:07
It makes this little sound like this on here that. Yes, just a little, it's this little rubbing in the background. And I don't want people to miss what you're saying. So. And maybe the other people are crazy, like me and hear tiny little noises in the background that completely takes them out of everything. But hopefully, hopefully everybody's not crazy like me. Alright, so let's see how many kids do you have? In total?

Katie 3:33
We have two kids, and it is my youngest daughter that has diabetes. Okay.

Scott Benner 3:39
How old is he or she?

Katie 3:42
She is eight years old.

Scott Benner 3:43
And how long she had diabetes now,

Katie 3:45
since August. We I have like the most non medically knowledgeable person you could ever meet. If it takes more than like, Advil or water. I'm out like I don't know what I don't how to solve your problem. Like waters not doing it. I don't know. It's terrible. Really. I'm like, I can't believe kids are interested to me, but they are and I mean, I have one that's 11 and she's still around so you know like we're doing something right but I really don't know anything medically. So

Scott Benner 4:17
maybe you just have good water. Katie.

Katie 4:20
We have water here. But yes.

Scott Benner 4:23
Oh, I didn't know this was gonna get turned around on me. But that's fine. No, no, maybe it's just like full of vitamins and nutrients and everything. And you just you just hydrate you're like, hey, you broke your leg hydrate?

Katie 4:34
Well, okay, I would be like, Okay, we gotta go to the doctor for that. But I think a lot of things like I got a headache and my kids like always roll their eyes. So I'm like, have you drink any water today? Like your body needs water and so I just that when she was diagnosed and like they're finally taking my advice. She's drinking so much water.

Scott Benner 4:54
I'm getting through to these kids.

Katie 4:56
Yes and no like, oh, probably she wasn't my advice to her. But he was just telling her to do it anyways. But

Scott Benner 5:02
soon I'm gonna move on from this hydration message and move up to something else. They they've got this one, you must have really thought you want for a couple of minutes, right?

Katie 5:11
Oh, yes. And like That daughter of ours has always really drink water. Well the other one were like, Do you drink any water during any time? It was a concern like, back in 2016. When I brought her in for an annual visit, we just said like, she does drink a lot of water. Do you just want to test her for diabetes at that point. And so they tested her back in 2016. And her blood glucose came back at 75. So I think once we had gotten that test back, we just didn't even think like diabetes wasn't an option anymore, which was really naive, I guess. But

Scott Benner 5:53
well, I mean, I can't I can't say that. That's naive. I mean, if you had the thought, by the way, why was the thought because the excessive thirst made somebody look for diabetes.

Katie 6:03
Well, my husband's grandma had type one diabetes, and she actually lost a leg to diabetes. And I never met her because she passed away young. And then her, his dad and his sister also had diabetes, too. But that was I think his sister was type one, but his dad was type two. So

Scott Benner 6:24
So you there's two people in your pretty close extended family who have had type one diabetes, so there was enough of knowledge that the excessive thirst read like diabetes to your husband has that right? To him? Yeah, yeah. And then But then you take the poor kid and and get a test when her blood sugar's 75. And then you don't think about it again.

Katie 6:44
Pretty much and like that test result came back and I didn't I really didn't know what anything meant. It just came back and greed, like, Okay, well, alright. Like, I had no idea what any of the values even meant.

Scott Benner 6:56
Right? Right. Okay. So, how much longer after? You know, you found out she didn't have diabetes? Did it take for you to find out? She did have diabetes?

Katie 7:05
Oh, well. It was July of last year. So July 2021, is when we got her brought her in to the doctor we were she was starting to wet the bed again at night. And she was signed up to go to a camp and stay overnight. And I'm like, whatever is going on. I obviously don't know how to solve it with water. And so we brought her in and she got tested then and I will always remember the day I got the call from the doctor was because she called me my daughter was out trying to learn how to water ski out on the reservoir here. And the doctor's like, she called me and I was just like ignored it because we're on a boat. It wasn't very easy. And then the second time she called me I'm like She's calling me twice in a row. I better answer this. And she's like, Katie, Emma has type one diabetes. I'm sorry to tell you this. Like her blood glucose is 712 right now is like, do you have eyes on her? And she passed out? Is she seizing? Like, do you know what she's doing? And I'm like she's trying to learn how the waterskiing right now. So from the urgency of my doctor, I got it that it was a big deal. But I had no idea until like, the more we learned about it like seven times 12 was very high. And quite crazy. So

Scott Benner 8:23
well. It must have been difficult to believe something Was that wrong if you were watching or being pulled behind a boat and skiing, right?

Katie 8:30
Yes, yeah. But yeah, because I think her biggest was wetting the bed at night was her biggest thing that we picked up on while she was eating a lot. But we just thought like, well, she's probably to the point where she's starting to grow. And it was absurdly high. It was like 100 degrees out. And we just thought she was drinking a lot of water because it was hot outside. So I always it's so easy to look back afterwards and see all these different things stack up and well, I thought I had different reasons for him. But they were all wrong. Yeah,

Scott Benner 9:01
no, listen, that's pretty common tale. So you drag her off the boat, you take her to a hospital or to a doctor, how does it go next?

Katie 9:08
Well, that was a something else I found really interesting. After listening to your podcasts, they just said you're showing up. And one of the larger cities in our state that's an hour and a half drive from us. And they're like you're showing up tomorrow at nine o'clock just make it happen no matter what I'm like, Well, this must be serious. So we've never had a hospitalization. We went to the endocrinologist and it wasn't even option of who you go to. In our state. We went have one pediatric endocrinologist in our whole entire state. So there wasn't really much of an option there but we show up and they did give us a heads up like you're gonna be here for a few hours I think was three or four hours and then we were sent home with our supplies and I hear about a lot of hospitalizations happening and I'm just really glad we just didn't have to hang out at a hospital the whole time. then that we were able to kind of like just sort of keep going on with life. Yeah.

Scott Benner 10:03
Well, it's interesting. That's kind of have something to do with the, the, the small amount of physicians that are available. I mean, to some degree like you can't stack people up to are there maybe it's just how they do it. Or maybe it was a function of what her blood sugar was. And so she wasn't in DKA. Is that right?

Katie 10:24
I don't believe so. And her you when she was 12.1 that they would we went to the doctor's office, and then the long lasting insulin they put us on, they had her on eight units. And so part of the though more I learned about it, I was like, I'm wondering if they were flushing ketones, and we didn't know it because it wasn't long, at eight units of Seba that we got pulled way back. And less than a month later, like a unit of Joseba was too much for 24 hours.

Scott Benner 10:54
So interesting. Like they were almost managing the drawl down with you at home, or most places, or most people you talk to that happens in a hospital setting. Yep, something else. Hey, there's a beeping going on behind you. Do you have any idea what it is?

Katie 11:07
It's my dishwasher? Because I stopped it.

Scott Benner 11:11
At Can you got to change your life?

Katie 11:15
Let me see you push your buttons. I'll be right back.

Scott Benner 11:18
I'll be right here.

Beep beep beep see what I can do for you people? Right. Now. You don't need to hear that beeping. I'm on top of this for you. Don't you worry, Katie. I'll never hear this part. It's not weird. She's coming back. This is it. I'm back. Hi. Thank you.

Katie 11:49
You're welcome. Sorry,

Scott Benner 11:50
no, don't be sorry. Alright, so with? I'm interested in this because you have How do I how do I ask my question? Did you feel like you had knowledge about type one? Not you but your husband? Or was it because it wasn't him? Who had type one growing up? Did he not know very much about it?

Katie 12:13
He did not know much about it. His dad is type two. When we are sitting in the doctor's office, said to the endocrinologist, I know it's bad because we're over seven. And he's like, how do you know what a 2007 is good. He's like, he writes, life and he helps with life insurance for people. And he's like, you can't get a policy unless somebody has agency under seven. It's his knowledge. We were actually our shareholders of Dexcom and insulet, before we even had a diabetic child, because that's the world he lives in. He recognize these as really up and coming companies and great products to get behind and stuff like that. So my husband had more knowledge at the start just because of his market research on these companies than I did that day in our appointment

Scott Benner 13:02
where that's interesting. You were the first person to say I knew about these products because of investing, not because of diabetes, you're literally the first person who's ever said that to me. That's

Katie 13:13
been on insulin. He's think he's listened to gotten whatever information he could, even though he wasn't interested from a diabetic standpoint, and he could see that it was like an outstanding company and how it was so different than other companies that were out there. And so it was it was it is a different perspective, when he was like, I know for sure we want Dexcom he's like, I've learned so much about it. I don't know why anybody with type one, would it have a Dexcom? And that's coming with us knowing nothing about diabetes. And that was his conclusion.

Scott Benner 13:45
Yeah, from a completely dispassionate third party perspective, too. That's really interesting. That's cool. Do you think I should be asking people to disclose if they own stock when they come on the podcast? That never occurred to me?

Katie 13:59
If you're one of the major company owners?

Scott Benner 14:02
Yeah, well, I mean, that seems obvious, right? Like people liquid the CEO comes on. They know he, I assume they know he has people have stock. Yeah,

Katie 14:11
it's they're not we're just little little or nothing. I mean, we're just small shareholders. But it is quite interesting.

Scott Benner 14:18
I understand that I am really fascinated by that, actually, that he had a firm understanding of a pump and a CGM. Because of that perspective was really something so Did Did that mean you tried to get those things very quickly? Or how did that all go?

Katie 14:33
The I'm positive. If we wanted to leave the office that day with that they would have sent us home for sure with a Dexcom and I think they would have started the paperwork for the pump right away. I wanted to start this is one thing I probably disagree with you on is I wanted to start with a bare basics, just for in a situation that you have to go back in technology that you're not struggling to know what to do and my lack of any sort of medical knowledge, I felt better at ease. Like if the wheels come off the wagon, and we have to go to the most basic things. I'm not trying to figure out what I'm doing. I will know what to do.

Scott Benner 15:13
You know, it is so interesting that you say that. I, this happens to me all the time on the show, but because literally yesterday afternoon, it hasn't even been 24 hours ago, it was so recently, I was speaking to a friend. So my friends, colleagues, sister, her kid heads type one diabetes just diagnosed a few days ago. And they asked if I would talk to her on the phone. And so I did. And she said, they told me, I can't have this right away, because I need to know how to use it. How did they put it? I need to know how to use it in case technology fails. That yeah, that that was the vibe of what she said. And my immediate response was, that's so but then my explanation was that when you have diabetes, and you're using insulin, and you're blind, you don't really know what's happening. So I've gotten to speak to enough people that what I recognize is that after a long time of using just a meter and MDI and not having a CGM all, not all, a lot of the things that those people think they know to be true, they find out was just their best guess once they have a CGM, and they can see what's really happening. Like they were filling in the blanks with their guesses, and we're frequently wrong about it. So my, my stance is always and by the way, it doesn't matter if you and I agree, you absolutely should live your life freely. But my stance is, see it happen. You can really understand it. And then if somebody were to come and take it from you, you know, which I also think is kind of a weird statement. I mean, here in the US, at the very least you don't I mean, it's like saying, I don't know, it's like saying pack a lunch, because we might get out there and not have anywhere to eat. If you're in New Jersey, you can get food every 30 seconds. You know, like I mean, so in the United States, I think you can get your hands on a Dexcom. If you have insurance, I don't believe there's going to be a Dexcom shortage at some point. So I don't think it's gonna go backwards or fail or fail for long. But if it were to if somebody just came and took it from you, you would at least have the experience of having lived with it. And then at least when you're guessing what's happening in between the blood sugar tests with your meter, your guesses would be more based in reality, and less just based on you just making something up, you know, because you've never seen it before. Does that make sense to you or no?

Katie 17:50
It? It does. But that day being less than 24 hours past diagnosis, I didn't even know that your blood sugar could change. Like I was so uninformed that I didn't even know like your blood sugar levels could change so quickly, with so many different variables. And it I think the other small thing we gained from that was like, my daughter saw what the opposite was, she is not the biggest fan of the Dexcom sensor and church insertions. I don't know if some of that's mental or physical or combination of both. I don't experience it. So I don't know. But she's able to come back and say, but I don't want to fingerprick all the time. So we were only on fingerprints for a week before we got the Dexcom. So it was very short term. And I think it even helped her realize, like, this isn't what I want. The one thing that we got from just being finger picking for a week was well, we're trying to figure out how to count carbs, like just even shifting like okay, insolence, you know, insulin and then our food and carbs. Like at least we're have the like, I think it was okay for us not to have those numbers for that one week just to try and get something else sorted out. And not all of it at once. And that is a case by case scenario, I'm sure. But then once we got the ducks calm. Like, I don't think anybody should give more than a week ever without a Dexcom is, you know, like, Oh, yeah.

Scott Benner 19:23
Well, you're certainly helpful. Your response. So mimics the person's I spoke to yesterday. It's fascinating. Because the way she put it to me is when they said that to her. She didn't have any context at all. And it made sense. Well, you want to know how to garden with a hoe in case your rototiller dies. And that she was like, Yeah, well, that makes sense. And I don't listen, I think what you just said a second ago, to me was the most valuable part of the whole conversation and the experience, which is how do you know what you are trying to avoid if you've never had that either? So even just her having the fingerprints For a couple of days made her say, hey, you know what, I don't love it when this thing inserts, but it's better than poking my fingers every couple of hours. So it did give her some perspective that she didn't have a week before.

Katie 20:12
Yeah, it was never our goal. Like we want to keep this. It's not simple. Like, and I think some people think finger picking is a simple way, it is not simple. I don't think it is. It's so much freeing to have the Dexcom that instant feedback, you're able to learn so quickly. It's amazing. But there was just such a big learning curve for us. Like, I think we had the Dexcom for two weeks. And we were like, well, she's not low. I mean, like it took us a while to realize what we needed to figure out. And that's where your podcast came into play. Like, this is why we need to know these numbers. This is how we can manipulate the numbers. And that was just a huge turning point for us. And

Scott Benner 20:54
I didn't know this was gonna be an episode where nice things were said about me, but I'm now super excited. Before Katie, I was just going through the motions, but now that you're gonna say something nice, I'm all jacked up. No, I'm just kidding. No, no, I appreciate you know, I'm not arguing with you. Right. Like, I'm not saying that it's a bad idea. I just, I think it's the way I, the way I think of it is I think that we set up these black or white things all the time, we always say it's this or that it's either or, you know what I mean? It's either you do it this way. You do it that way. And there's only two right answers. And, you know, I don't know, like, I just don't think that's the way the world works. You know, I think it's super reductive to say you have to do it without the technology in case like technology fails. To me, that doesn't make any sense. Because even if the technology fails, I will have at least had it to learn from I don't know, like, in the MK don't care. You don't I mean, people should.

Katie 21:52
I'm one of the few people. For me to give my daughter a shot. It was so hard. And I know it's not easy for a lot of people. But that was just like, I have to know that I can do it and not where I feel like it's more of an emergency situation. Like I didn't pick up my glucagon because I didn't want to have to use a syringe. And then they kind of got after me for not picking up glucagon. So then I did.

Scott Benner 22:18
I was excited yesterday when I spoke to the woman that newly diagnosed in the hospital last week, they sent her home with a G voc hypo pen, because I was getting ready to say to her, hey, you know, I actually I had, it's so funny when I have these private conversations I first it's almost like I'm disclosing my my stock, which I don't own any of but I'm just using it as an example. I'm like, Listen, I'm about to tell you about a CGM. They buy ads on my podcast. I'm like, That's not why I'm telling you about it. And then I brought up the glucagon because I think it's really handy the way it's set up. And I found myself going, You know what, they're actually advertisers, too. And I was like, almost found myself apologizing for suggesting it. And then she goes, No, they actually gave us that one. I was like, Oh, that's cool. So

Katie 23:00
I was I actually was that our three month appointment, I asked for the GMO pen. And he's like, You should have the glucagon. I'm like, Well, I don't and I want the G voc pen. And I don't want to miss like, I don't want to administer syringe like I don't think I think properly like medical things are not my strong suit. And I still don't have it. Oh,

Scott Benner 23:23
keep pushing. And by the way, good of you to like recognize that. You know, that might not be the strongest part of your personality or your skills. You know, I I still I don't know. I don't know if I say this very often. But back when I was finger sticking Arden so much. I wouldn't do it to myself because I was afraid that if I thought it hurt, I'd have a harder time doing it to her. I also like I wouldn't practice like inject saline and myself like I wouldn't. I just didn't want to know what it felt like because I knew myself. And I thought this if I if I relate this to something terrible, then it's going to be like a struggle for me to do it. I've done it all now since then. But back then when she was really little two years old, you know? 19 pounds. I couldn't bring myself to know the real truth actually.

Katie 24:16
No, and I guess everybody says they don't like needles, but like neither my kids I didn't have any epidurals nothing's good. Like, no way. Like that's how much I hate them. They're awful. Like, I just,

Scott Benner 24:28
we don't come out a needle person. Katie is Gotcha. So, in your notes that you sent me, you indicated that you guys didn't like flinch very much like you kind of kind of kept running forward with life. Was that? Was that like a purposeful thing or was it was it based in ignorance or how does it work?

Katie 24:50
I'd like to say both now that I look back. She was diagnosed on a Wednesday the following Wednesday, I left to go hiking in the mountains. for like, a 15 mile hike, and with something, I've been training for that for months, and my daughter was also set to be at a camp at the same time. And so we kind of relied upon the staff at the clinic and we call them like is Do you think it's okay? Like if only one person's here managing her? Or if we called the camp nurse, and she seems to have some experience, like, are we good to send her off to camp? And they're like, Well, if you think it's good to get back to life, just go for it. And so yeah, it was gone backpacking, a week after her diagnosis, my husband took her care until she went to camp and she had like somebody in the medical field taking care of her. And then on my way home, I stopped at that camp, and I actually volunteered in the kitchen, just to be there for something came up. Although I did absolutely nothing, obviously at that point, she's way better hands in the nurse's care than my care. But I was physically at the camp, helping in other ways, I was gonna

Scott Benner 26:05
say that, did you find comfort and leaving her with somebody who said, Oh, I've seen this before?

Katie 26:10
Oh, we didn't think twice about it. And selfishly, I would be in the kitchen from seven in the morning till seven at night, and I'd take a shower, and then I would sleep for 11 and a half hours, and then I'd wake up and just go to the kitchen again. And I, I said, I feel really guilty about how much continuous sleep I'm getting, even though we were only like one week into the diagnosis, like we already realized, like doing that to a finger prick is very disruptive to sleep. And it wasn't very beneficial at that point, because they didn't even tell you what to do. Like, oh, she's 300 she's not low, we're good. And we had no idea like, that's terrible.

Scott Benner 26:48
So the people that you were counting on thought 300 was okay,

Katie 26:52
know the clinic. So like, we came home, they said wake up at two o'clock finger picker, if she's low, treat the low, otherwise do nothing. And I'm like, why am I waking up? Looking back? I'm like, Oh, I'm gonna be up and she's 300 We should have been doing something.

Scott Benner 27:07
I would love to hear the person explain that the person that said that to you? Or who would say that to anyone? I'd love to hear the explanation for we don't do anything about a 300 blood sugar.

Katie 27:18
Okay, but I will I will step up in their defense for they did have us Pre-Bolus thing from the very start. Nice. They didn't call it a

Scott Benner 27:25
Pre-Bolus. Well, they call it Do they have a name port?

Katie 27:28
They just said try to give the insulin 10 to 15 minutes before she consumes food

Scott Benner 27:32
can't sell T shirts that says that? No. By the way, I do not sell a Pre-Bolus T shirt. Although I probably should. I mean, honestly, don't you think that's what everyone needs to I think there should be a magnet that sticks year for refrigerator that just says Pre-Bolus. Keep in your head, you know, let's play I'll tell you. It's so I'm always interested. Because it happened again, earlier this week, I record this podcast a lot. Where people feel very protective of their medical people. They'll say well in their defense, or they did say this or that I don't want anybody to think that. I was speaking to somebody the other day, who got like patently bad medical advice. Through through years, they recognized it was bad. And when I asked them to kind of talk about it, they could not bring themselves to say it all out. It's interesting. I don't know. I wish my wife spoke about me as nicely as some people talk about their doctors who let their blood sugar stay of 300. I don't I don't I I'm I'm super interested in the psychology behind that. I don't know that I'll ever understand it.

Katie 28:49
But so because we have to travel 90 miles to our endocrinologist, they had us call in twice a day at the first week. And we'd have to call in daily and it was like they would slowly give us more to think about as we would call in. But at the same time once I got back from hiking in Montana. I contacted somebody else in the community that I knew had a diabetic child. And she had just offhandedly said, like, oh, there's a podcast that like to listen to about diabetes. I'm like, I don't do my podcast. And then I was like a whole day and I was feeling really sleep deprived already. And then I felt like oh my gosh, somebody suggested something and I'm like, I just don't do that. Probably not a good choice so that I wasn't sleeping at 2am Because I'd wake up and check her blood sugar and I started I was overwhelmed. I started going through all these episodes and I'm like, Oh my gosh, like where there's just so many I don't think once I start something I have to do it all I can't. I can start a bad book. I still read the full stupid bad book like there is no like Half doing something in my life. So I like had to think about it for a week or like a day before I started listening to him because I'm like, how am I going to have the time to listen to these all and I started in the most logical spot of all I listened to the one about Everest, you know, super helpful for managing my own child.

Scott Benner 30:19
Where you had recently been on a mountain, so that made total sense.

Katie 30:22
Oh, baby, never in a risk of an avalanche. But no. So

Scott Benner 30:29
Katie, people with your affliction that have to finish things that that when they start them, you're my bread and butter, first of all, so thank you very much. And but I want to be clear for people are listening. You're not saying that my podcast is really bad. You just have to finish it because you started it already. Right?

Katie 30:45
Well, no, just kidding. No, it is fantastic. It was looking back, I really wish when I contacted this person, I wish they wanted to set I like to listen to this podcast, I wish they could have expressed like, this is where you're gonna find your most helpful information. This is where you can gain other people's experiences. This is where there's just so much up to date, and continuing to progress information available, and so worth the time investment that it does take. And I'm like, if people couldn't find time to binge watch something on Netflix, I took my time to listen to everything on your podcast. And that was kind of by listening to your podcasts. And I think I started with the defining diabetes. And then I started listening to the Pro Tip series. And I was still calling into the office, like, okay, she continually set the goals low, or she's constantly high. And I started making suggestions to the nurses. And I'd be like, before you tell me what you think should happen, this is what I would like to do. And it was nice that I could use them as a resource because I felt like there's a lot to learn right away at the beginning. And I appreciated that. They listened to what I said. And most of the time, they're like, why don't you give that a try? Once in a while. They said I think I would do this instead. But try what you wanted.

Scott Benner 32:07
First. Well, that's nice. It really Yeah. Also, it's telling, right? Because if you called me, and I don't know about anything, something I knew about intrinsically, and you called me up and you said, Scott, I think we should try this. You know, I would say no, I don't think we should because I know how to do it. And this way works. So it's weird. Not that not to be open minded. That's great. But it's odd that you can call a physician's office and say, Hey, here's our problem. Before you tell me the thing, you're gonna say, here's the thing, I'm gonna say you said your thing. And they went, Oh, yeah, that's fine. Do that. But it wasn't the

Katie 32:44
same using fancy words like, I want to Pre-Bolus this longer, like, I think because of your defining diabetes, like I had words to properly talk to them to

Scott Benner 32:55
I might be cynical, but I think that that. I think that's what I don't think let me say it this way. I don't think that sounding like, you know, what you're talking about should be enough to dissuade a professional from their opinion. And when it does, that causes me to call their opinion into question. This, you know, I'm saying, I could agree with that. Yeah. It would be like if you said to your kid, hey, put that down. Because that's dangerous. And your kid went, No, it's not you went, Okay.

Katie 33:29
I wouldn't allow that. Right, Katie, you're

Scott Benner 33:31
not doing that. That's this is my point. My point is, you know, I'll tell you what I told the woman I spoke to yesterday, I said in six months, you're going to know about more about this than you could ever imagine. And a year from now you're going to know more about it than the doctor that's helping you. And she's like, how is that possible? And I said, I don't know. But it's true. So just keep absorbing and figuring things out. I'm super glad that podcast helped you. Like even if it was just a bully a nurse into agreeing. Not not a bully Katie. I'm just I'm teasing.

Katie 34:04
No, but it was nice. Like, it was just like, I needed that process, though. Like just to have a couple of times of them saying Sure. Okay, do that. And then I'm like, I'm gonna stop wasting their time. And I'm just going to start changing things. And like, I didn't even know what to be afraid of insulin until I listened to your podcast, and like, oh, people are afraid to use this stuff. Like I just totally oblivious on so many levels, which I think is kind of a blessing in some ways, because I never hesitated to give the insulin. I don't know. I didn't have to do the needle. I didn't care. Like I have no problem giving her insulin.

Scott Benner 34:41
So this has only been about seven months for you. Right? Correct. Okay, has it leveled you up as a person?

Katie 34:50
What do you mean by leveled up?

Scott Benner 34:53
Jeez, Katie, do you know how sometimes I ask questions and I'm worried that it's going to offend people. This might be one of those times but I don't meet in an offensive way. So let me get through it okay

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Katie 37:39
Oh, I just think, I don't know. I just have a really positive disposition about everything. And I just don't let much bother me. I think it's so I don't know.

Scott Benner 37:50
Like when you're talking I think I should have married you and not Kelly. That's because you seem so plus it.

Katie 37:56
She seems very smart. Oh, she's pleasant to

Scott Benner 37:59
she's pleasant to other people not to me. Katie. Have you ever spoken about Kelly's gas station voice on the

Katie 38:04
podcast? No. Okay, or I don't think so. Kelly has a gas station

Scott Benner 38:09
voice. And it's this voice. She goes, Oh, hi. She gets very nice. And she goes up an octave. And she's super pleasant has a big smile on her face. And I joke with her I was like, I wish you would talk to me like I worked at a gas station because the I would appreciate that. So Kelly has a gas station voice. That's how we make fun of her about it here at the house. Not that she's like some terrible person in the shadows. I'm not trying to say that. I'm just saying. I don't know. Maybe it's just because you are you born in North Dakota?

Katie 38:40
No, in Minnesota, Minnesota.

Scott Benner 38:42
I don't know you have like a more Midwestern vibe about you? Do you know what I mean? Like you're not trying to kill everybody and take their money. Out here.

Katie 38:55
It's not positive, like just move on. I just I don't,

Scott Benner 38:59
I don't you should try living out here. It's a rat race that I know where that word came from. That's a viable description for living on the East Coast.

Katie 39:08
Then out on the east coast a whole lot. But we are planning on taking a family trip out there this summer. So maybe I'll have an inkling of what you're talking about. Once we get back. I don't know. I went to New York once.

Scott Benner 39:19
Would you see a show had a launch?

Katie 39:23
Skating and Rockefeller Center right you know, and like I realized I talk too much for people. They're like, Hey, isn't it nice though? And like people look at me like I grew up on my own or something like people don't talk to each other. Like, obviously I do not fit in here and

Scott Benner 39:43
I just realized that I don't see the phrase killer be killed as a bad phrase. Just had that like realization in my head. I was like, I just see that as like, you know, marching orders. Like let's get out there and when I want to live where you are like Not in the winter, people have told me how bad the winters are out there

Katie 40:03
it is on hold. I don't even have words to describe the winter. But, you know, three months out of the year is absolutely gorgeous here. So I

Scott Benner 40:13
mean, my goal is Katie, my goal is, if all of you would just please tell other people about the podcast, my goal is to live those three months in kind of that Wyoming, North Dakota ish. Like, I don't understand the country completely. But again, that place in that time when it's not cold, and it's not hot, that place seems perfect to me in that in that little section of time, then I'll run somewhere else in the summer, where it's not too humid. And then in the winter, I'll run back to one of those hot places that these are my goals. I don't think I'll ever accomplish them. But

Katie 40:44
I think you just need to buy a Winnebago.

Scott Benner 40:47
Okay, you don't know me at all.

Katie 40:51
When you can meet that goal. I mean, you can have whatever you want, but you can't have it all, you know?

Scott Benner 40:56
You sure? Can you because I think if I killed enough other people, I can get it. That's what I learned growing up here,

Katie 41:02
now just be doing stuff for you. And then you just have to take on more. So like you want to keep other people around,

Scott Benner 41:08
I hear you I really should bring other people around. The other day, somebody said to me, why do you not have an assistant and I was like, who's gonna pay that person? And then the person I talked to was laughing and said, I know people who don't need an assistant to have an assistant. I was like, I would rather work myself into the ground the way God intended. Thank you. So anyway,

Katie 41:29
what would you do it yourself? It does turn out the way you wanted to, you know, like, there's that aspect of just doing it yourself, too.

Scott Benner 41:36
Yeah, more time would be nice. But in general, you are right, the podcast comes out the way I want it to be like I've never once listened to one and thought who did that? You know, like, don't put that there. Or don't say that. Or the other night I was recording ads. And I was loopy, like, so I got back from my son was playing baseball in Florida. And we got back and I had this is probably boring for people. But I had killed myself the three weeks prior to leaving for this one week trip. So that you guys would not notice that I was gone while you're listening to the podcast. So I had to like work ahead of time, I had to double up recordings to like, like free. Actually, I have one on I think I have to tomorrow, because I had to move people off of this this time. But anyway, I got enough done. So that the entire time I was gone, the podcast would run fine. And I got to the point where I had some shows edited. But I didn't have the ads and the bumpers in them yet. So I basically came home Saturday, and had to pull myself together really quickly and make a podcast to put up on Monday. And I'm busy. I don't like working like that. So I was just trying to rest up from the trip. And I think it was like two nights ago, I was up at like 11 o'clock buttoning up an episode that you were gonna get like six hours later. And I got super like tired while I was doing it. And really kind of dopey. And I just left it all in. Because when I listened back to it, I was like, well, that's funny, people will like that. And if I gave that to an editor, there's no way an editor would have left in what I said, like at one point, I said, my tongue just stuck to my face. I don't even know what that means. So you know.

Katie 43:13
And it's nice that the ads are the same the whole time. Like, you can't just quote the ad because it's over and over and over. It's nice to hear something different, you know, okay,

Scott Benner 43:21
thank you. And I hope the advertisers are listening and appreciate my extra effort, because that is exactly what I do. I don't want them to be the same over and over again, because I'd like them to be entertaining and informative. And I'd like you to want to listen to them. So anyway, point is an editor would have just chopped all that out and sent me an email and been like, do that again. And to me, I was just like, Yeah, screw it. It's fine. So anyway, I'm thinking back on your note, what else did you want to talk about? I don't want to have to look, I had it in my head. And now I'm

Katie 43:55
like, once I thought about like, I know I sent you a note of appreciation. And what a difference that made in the management of Emma's management over diabetes and like her future health is going to be drastically better because of you and Jenny. I wrote one to Jenny too, but like, I told my husband yesterday that I was doing this podcast and like I don't even was like writing in complete sentences at that point. Like I'm so

Scott Benner 44:19
no, it's a little overrated. Yeah, word over runny, but I get the point. You know, if I read it, you'd be embarrassed.

Katie 44:28
Yeah, I don't want to hear me

Scott Benner 44:32
goes on and on.

Katie 44:35
I talk a lot so it doesn't surprise me that I write like that either. But I don't know. There's just it's such a different world. And you feel like when so many other people around you aren't affected by it. You feel half crazy, and it's just nice to listen to other people like these are real things that we see I'm not going nuts in that there is a community even though I am not necessarily in acting with these people like you just don't feel as alone in this crazy disease that we have now.

Scott Benner 45:06
Yeah. And you did say one thing in your note that I disagree with, you want to hear about it? Or Sure, let's talk, we can talk through it. You said something about, oh, here it goes. I want to quote you. And I would love to tell people to use the search feature on your Facebook private group. Instead of asking how to Bolus for insert carby fatty food here, search for that food, and then read posts that people have already taken the time to share. It's another way of gaining info that is quicker than waiting for people to respond. I want to hear your thought on it first, but then I'm gonna give you mine.

Katie 45:42
Okay, so I love your Facebook group. And I think you can just be not active at all and gain a lot of information from like, where to play sensors to how certain people feel different foods, what people like a starting point of how to start extending or not expand, or I remember researching pizza while we were still MDI and just like, Okay, let's try this much here. And that mature at least it's a starting point. And not just like, let's do it all upfront, that didn't work. Okay, now what you know, but I just felt like, maybe I was on the Facebook page too much that I felt like so much of it was kind of the same thing over and over again, I'm like, Okay, well, how many pizza posts do we need? Can you just see what other people said already?

Scott Benner 46:27
Hi, Katie. Now you want to get the other side of it? Sure. That is, if you that is the exact wrong thing to say, if you're trying to make a Facebook page that is valuable for people, because it's not. Even if it could act as an encyclopedia, like, you know, even if you could say, hey, everything you've ever asked is already in this Facebook group, you just have to search for it. If the Facebook group wasn't active, people wouldn't come to it. And if they didn't come to it, then they wouldn't be there to search for it. So you have the activity is the most important part of making a thriving online space. Like you need to, you need to want them to ask about pizza. Every time somebody thinks about it, you need them to say the same things over and over again. Because there there is a finite amount of things to say about diabetes. I mean, we haven't found the end of it yet. But there, there has to be an end to it somewhere, right? But if, if those things don't keep happening in front of you, you won't even know to wonder about them. So like you need you need it to. It's like a river, it has to keep running. Like you know, you can't you can't float down the river and then go I don't need this river to run anymore. I'm already down the river. Because there are other people who need to see all of those conversations, they need to watch them happen. They need to wonder about them. And if they stop happening, then nobody will pay attention to the group. They won't be in the group. And they'll never see the conversations. The conversations are the group without the conversations. It fails. Yeah, I agree with that. Yeah, but you're but I think what you're saying more is that it gets can it get overwhelming at some point?

Katie 48:14
And then that at that point, I could choose just not to look at it.

Scott Benner 48:17
Right? Well, you definitely could. Yes, you are an autonomous person, you can do whatever you want. Yeah.

Katie 48:23
I will say this about your Facebook group. Oh, our first few birthday party experiences were quite interesting. Let's see her. Her second birthday party she got invited to we had a Dexcom change right before it. And we she was limited in where she was comfortable on putting her devices and I'm like, I'll give her time to get used to different spots. And I had put her Dexcom on her leg and she's like, it hurts to move my leg. I'm in so much pain. And this is sometimes how we feel closer to insertion. And then as time goes by think she kind of forgets that it's on her body. But she was so adamant that it hurts so bad. I'm like, I really don't know, does this really hurt you and I really appreciated. I put a picture on the Facebook group of her pumping her CGM. And people gave me instant feedback like Oh, yep, occasionally it can really, really hurt and like I could see where that might happen in that spot. And so I knew to like we pulled that thing right away, put it on somewhere else and then she was able to go off to her birthday party. And so like I really do appreciate the immediate feedback of all those who do contribute their experiences because that's the one disadvantage of just being a manager of diabetes and not the one experiencing it of a kid. I just sometimes I'm like, how much of this is really what you're feeling? I don't know

Scott Benner 49:43
if that makes sense to things. I the very first Dexcom sensor I ever put on Arden I definitely didn't do it right and it hurt her and we made her wear it for a couple of hours. And I and the minute we took it off of her, I realized I'd put it into I forget what I didn't do. But I guess I didn't pinch up a little bit. And I don't know, it was it was back as long time ago. I haven't had that problem since then. But the point is, is that we were like, no each, we'll get used to it, you'll get used to it. And if she just, we were wrong, I still feel terrible about it. And like that has to have been like 10 years ago. And, but, but to your point about the page, you have no idea like none of you know how many, like threads I go into. And I go, Oh, I know what to say about this. Then I read down, I'm like, well, it's all covered. They don't need me. You like like, it's it's really wonderful like to go in and see so many people using the podcast, to grow their information. And then going back to Facebook and sharing it with somebody else is really cool. Like I more often than not, I just look and I think I don't need to be in here. Sometimes I'll just write great thread or like, something like that, and I'll get out again. But in the beginning, when I started the Facebook group, I had to be like in every thread, because it was exhausting. I have to be honest, to be like, no Think about it this way. Or have you thought of this, like that kind of stuff? Like I'm not real big on just telling people what to do. I sort of like to talk it out with them on Facebook, and ask leading questions to get them to that on their own. Because not only are you helping them to think through it, but everybody watching gets the thing through it at the same time. So I think it's an amazing tool. I cannot believe I'm sitting here telling you how much i i appreciate a Facebook group. Because I never thought that was going to be the case I swear to you when I started I was doing it because people were asking me, and I just thought off they want it. I'll do it. But it turned into an amazing thing. So I anyway, let's go back to your rambling message. This is fun. No. I feel like you don't say anything that I'm just gonna go back to your rambling message Hold on a second. You really drive 90 miles to get to a endocrinologist?

Katie 52:00
Yes, I do.

Scott Benner 52:03
Is that like a day trip?

Katie 52:03
No, well see, that's the different about our traffic here. I drive 45 miles to my work. It's a even smaller town that we live in. But it takes me like 43 minute 43 minute commute to drive 45 miles. Like, that's the easy, lovely pace of life we have here. So that endocrinologist is on the border of Minnesota and North Dakota, and they actually fly him and his crew to different parts of the state so that not people Oh, don't have to drive like seven hours to come and see him so they fly him into a more centrally located part of the state so that people just only have to drive like an hour and a half to three hours to see them and not like six or seven hours.

Scott Benner 52:48
That's nice. Is that a common thing out there? Maybe just

Katie 52:53
not. Not that I don't know what but I think like only having one pediatric endocrinologist. Like there's other people with diabetes education titles within the state. Like it's not that desolate, but like that specialty. I think that's really neat that they're able to do that. Because no, it's wonderful else. Yeah.

Scott Benner 53:14
It's like it's like a rural house call except he doesn't come right to your house. He comes to your area, then you come to him from there. Your him or her? Oh, that's really it's kind of brilliant. Actually. It's frequent flyer miles must be crazy. Well, it's North Dakota, how do I fly around North Dakota? How many airports could you possibly have?

Katie 53:33
Well, our little small community has it like, aren't you we have quite a few small little airports. Like we'll feed into like Denver into more major hubs. But I believe this is more of like a private in that medical system. Oh, I

Scott Benner 53:47
see. This could be like a helicopter or a private jet or something like that. Because I

Katie 53:51
started doing the math like, Okay, you guys start your appointments at eight o'clock in the morning, you have to go through security. And then you you know, like I was thinking it was more like in a commercial setting that like oh, no, like, you pretty much. Get to the airport, walk on the plane, like all the flight papers and everything are filed and stuff like that. And because kind of

Scott Benner 54:10
sounds fun to me, there might be something wrong with me. But the idea of like just going to an area and having a bunch of people come to you and just talk about diabetes with them for the day. I would do that. That sounds fun.

Katie 54:22
Actually. You can come visit we could set it up somewhere in the summer. You could see how nice it is then or if you wanted to like go through a few snow banks or something. I mean, you could come out in the winter

Scott Benner 54:33
think the problem is going to be that I'm not a doctor. I think that's where you're gonna get the lunch when you start going. Hey, can we helicopter a guy in to chat with people about diabetes? They're like a doctor there. No, no sick guy I met online. No, we can't do that. Katie.

Katie 54:48
It is really okay. So we are rule that I think it really speaks to the information that you're able to give out like my rule setting isn't limiting the other eligibility for me getting good care because of your podcasts like, we can manage my daughter. Excellent, because we just have to be able to access a podcast. And that is the most helpful source of information. I was really encouraged by our six month appointment when we went in, they take all of our devices and download the information and stuff like that. And one of the nurses took my pump from me, the other one brought it back. And she's like, you have the most beautiful graphs we have ever seen. And I think my graphs compared to everybody else in your little Facebook group look awful, compared to what a lot of people are able to do. And it just like it was really nice to hear encouragement from his staff that they liked what they saw. But it also made me sad that this is more of a common thing that they see coming through their office.

Scott Benner 55:51
Yeah, I'm afraid, Katie, that the people who listen to this show are generally speaking in the minority of people who are using insulin. And, you know, that's good.

Katie 56:02
So, when we got on Dexcom, we start having alerts go off on both my husband's phone. And it's been really interesting. He has more contact with the public than I do. And there'll be people to hear the beef. And they're like, What is that like? And he's like, Oh, it's my daughter's pancreas. And they're like, what? And through that we have found out one of his golf buddies, his wife is diabetic, and he had no idea. And he was just dumbfounded, like, you can see what her blood sugar is doing all the time. Eric's like, yeah, I can see that she's been steady at 90 Ever since naptime. He's like, what? And so it's been really interesting getting Dexcom setup for her and the alerts going to my husband's phone, the amount of people our age that we didn't even know we're diabetic. Yeah. That are like, Oh, we didn't know this was available or even possible. And so I know two people that have gotten Dexcom, since they've seen Eric, get alerts on his phone that are our age with diabetes, it's wonderful. But there's a part of me that I'm not diabetic, but I want to go tell him like you have to take the time to listen to this podcast, you need to do it all. But I don't feel like I'm in a position that I can just say that to these people that have dealt with diabetes for like 20 or 30 years, like who am I? To tell you what to do?

Scott Benner 57:25
Well, meaning love? Well, you're a well meaning lovely person, you can tell them there's a way to say it. That you know, I mean, you could listen, as a person who communicates for a living, here's what I would do. I wouldn't tell them to do it at all. I would tell them what it's done for your daughter. And then, and then let them wander about it.

Katie 57:45
And that's one of the people is my husband's area leader. And he's after getting back my daughter's a onesies. He'll occasionally check like, Hey, how's it doing? It's like, well, here's her eight onesies, like how is that even possible? And so like, I feel like, at least my husband's able to plant some of the seeds. And I really hope that that desire can be in him to be able to be like, I don't need the chug a bottle of Gatorade in the middle of the night. Because I went though, like,

Scott Benner 58:14
I appreciate how you feel. And I know it's making me sad to think about it, it makes me sad to think about it. So there's, you know, there's first there's access, right? You know, a lot of people can't afford these things, or their insurance doesn't cover it or what have you. So there's that there's that barrier there. There's just the barrier of ever having someone say it to you, or to even understand that it's possible. Because most people come into it. They have their experiences, their experiences repeat. And that leads them to believe that this is just what diabetes is. And then there's not even any reason for them to look into it. Because they think well, this is the animal I'm dealing with. I'm gonna now just close my eyes and hope that I am one of the lucky ones and I make it through. And if not, well, then, you know, I was bad luck for me, I got diabetes, and this is what it is. It's hard to reach people to let them know that that's not the case. I do think I joked a little while ago about not being a doctor. I think not being a doctor is maybe one of the most valuable things about me. Because I can just share our experiences and my ideas. And there, it's not medical advice. It's a podcast, you know, and then people can again, take from it what they will or maybe have a thought lit on fire in their head and they'll go chase it down on their own. But if you start asking for doctors to say what they know out loud, you're just going to hear what you all are hearing in a doctor's office in another forum. If a doctor started a podcast about diabetes, no one would listen to it. As a matter of fact, I believe there are a couple of diabetes like orgs that have podcasts that nobody listens to So, you know, it's not enough to just say it out loud, you have to say it in a way. That's, that's easy to take up by the person who's listening to it, they have to be willing to listen to it. First, they have to, they actually have to listen to it, they have to be entertained enough to listen. And then they have to hear something that strikes their fancy or makes them wonder, whatever. So they can dig into it on their own a little more.

Katie 1:00:25
And I think you have to be willing to get it wrong. Like, you have to be willing to try it and be wrong and be like that, wasn't it. Continue forward, even though it wasn't ideal, just like, Well, that wasn't it? What's next? Yeah.

Scott Benner 1:00:39
And to piggyback off of what we were talking about, about the Facebook group, me if you think of me as a content provider for a second, and what you said earlier about, oh, there's so many episodes, I don't know where to start. If there weren't so many episodes, people wouldn't listen, because people want content. So if I were to put up I probably shouldn't say this, because I know there are a lot of other diabetes podcasts listening to this, but you guys were putting up one episode a week, that's not going to work. It's not going to work one a month not going to work. I there's there's a I would not They seem like lovely people. But there's one they put up like 10 every six months, like 10 episodes every six months. And like that's not a podcast, that's your hobby.

Katie 1:01:20
Your ability to improve and learn is so limited by 10 to 10 times you're going to think about something you know, like, right,

Scott Benner 1:01:27
yeah. And you're not even going to cover I mean, listen, there's so much to talk about the problem, one of the here, here's some free advice for the diabetes space that they didn't ask for. You're gonna love it, you keep telling people the same banal bullshit over and over and over again, it's, it's your content sucks. For the most part, it's repetitive, it's banal, it often is not helpful. It's often shrouded in so many apologies that you can't even get to the idea. And by that, I mean, I once read this paragraph about about Pre-Bolus thing, it was preceded and preceded by language that made you think I should never do this. Be very careful, because if you don't do this, like like it was, it was apologizing for what it was about to say, then it said it, hey, you might want to Pre-Bolus for your meals. And then at the end, then afterwards, it again, apologize for saying it out loud. And I was like, anyone who read these three paragraphs would have been scared away from Pre-Bolus. But not not even like, made to think like, oh, maybe this is something I should look at. So there are so many things in diabetes that don't follow. Don't follow the rules, you know, and I mean, God, even you hear people talk about it. It's like, count your carbs, you know, apply your meal ratio to this, that's going to work that's so infrequently works. I mean, how could that be? The only thing you say to people? Like, why would you not come along? And I mean, I talked about things that I was worried when I started talking about them that people would be bored by, like, I really push glycemic index and load and understanding the impacts of different foods. People don't talk about that. And diabetes Bazel the least sexy thing in diabetes, right? I mean, if if they're sexy things and diabetes, you know, I'm talking about like the way people like consume their media. It's Dexcom on the pod. Those are like sexy diabetes devices, like we all like, know that that's true. Like people love them for some reason, right? Just the idea of them, or the vision of them. One of the one of the most popular blog posts I've ever put up was just a picture of a Dexcom G five before it came out. They just want to see it. You know? And the point is, is that is that talking about basil, not specifically very sexy. It's hard to keep people's opinions. Or excuse me, keep people's focus on something like that. When it doesn't sound exciting. Oh, my background insulins important the thing I shoot once a day, that setting in the pump that the doctor set up that I've never looked at before. How could any of that be important? It's the most important thing. And I defy you to go find 10 doctors who talk to you about it once after they set it up in your home, you know

Katie 1:04:27
that? I think just even listening to your podcast gives me permission to like make changes. And so even before it was about a month in we got the Omni pod. And before we even had it I've heard enough people that you interviewed or like yeah, we left and we just so that we know better and they made changes right away. And so I just kind of adopted that philosophy just because I heard it work for so many other people. Like it's so every episode is so important because you get something different from it, but It just is mind blowing, sometimes to me, like people's inability to decide to make a change, or to try something different. I just can't. Like, I can't imagine not doing that right. At our last appointment that we have with the endocrinologist, like when the first time we went, he's like, we'll continue education. It's something we'll keep giving you. It'll be every time you come, you'll get more. And I thought we'd have to sit for hours every time after we're done with the endocrinologist. And so this was our third time, fourth time there. And he's like, Okay, you're at once he's good, what's nothing else you can go? And I was like, so do I have future time with these diabetes educators? Or is like, what is like the process going forward? He's like, Well, if you have anything that comes up, then we'll address it, whatever comes up at that time, and

Scott Benner 1:05:51
it's over now, go home. And I'm like, good,

Katie 1:05:54
because I'd rather not sit in this room. And I don't know, like, I'd rather learn on my own terms and stuff like that. But I was just like, you know, like, I don't know what they could tell me right now, that would be more helpful than what I've gained from listening for all these hours.

Scott Benner 1:06:09
I was messaging with a lovely woman last night, and I obviously won't, I won't identify them. But adult pregnant type one knows what they're doing, had gotten up to the point where I think the Basal was like close to 40 units a day, right through a pump. And they were using so much insulin, that the doctor said, why don't we abandon the pump and go back to MDI, so you can make these larger injections while while we're you're going through all this, and put the person back on MDI. And if I asked you to guess what they started her basil at, go ahead and guess she was using 40 in the pump. Where did they start a baseline?

Katie 1:06:55
Probably 30 or 20 or 10. It was tagged.

Scott Benner 1:07:00
So so it was 10. And now she's experiencing these spikes at meals, and then getting weird loads that she doesn't understand the loads are clearly from overcompensation with mealtime insulin because she's now using way too much mealtime, insulin and correction insulin because all the Basal is gone. So I just like, you know, she's like, can you please look at this with me? And I, I'll tell you, I have 50 messages right now I haven't answered. But she said she was pregnant. I was like, okay, like, like, I'll take a minute here, right. So I stopped, I read what she said, I looked at her graph. I helped her. The first thing I said was, I'm not a doctor, you know that right? And she's like, Yeah, I'm like, so this is not advice. Like, I'm just going to talk this through with you and see what makes sense. So we chatted about it for a little while back and forth, I don't know, 1015 times. And I And she's like, you're a genius. I'm like, am I I don't think I am you went from 40 units a Basal to 10. I know, this isn't like, but it was interesting. She never really thought about the Basal as a collective. She thought about it as her hourly.

Katie 1:08:03
Oh, he was going from pump to

Scott Benner 1:08:06
Yeah. And so I just was like, take 40 divided by 24. That's about what you were getting an hour. I mean, now you're getting a fracture, I mean, literally 25% of it, you know. So anyway, that's a person who knew what they were doing, and just got bad information from a doctor. And then they were like, I don't understand what's going on. But that happens to everybody is my point. You know, like it's a stark, it's a stark story here because 40 to 10. But same thing, if your little kids getting point, four, and they should be getting point eight that's 50% less than they need. And that stuff happens constantly. That's always happening to people.

Katie 1:08:51
The other thing I find kind of interesting is like I have seen people post like their endocrinologist doesn't want them on a pump because their insulin needs aren't high enough. And I was really thankful that ours that a pump was a good solution because Archer SIBO a one unit of true SIBO was too much for the whole day. For the whole day like I was because of your podcast. I like re engineered our meal plan. Like what high fat foods, protein, the high fat protein meals are we going to eat and tell her pancreas function changes again. And it was glorious, because I didn't have the battle lows at night. We couldn't go less than a unit. So then we just ate all this terrible food that was delicious for us. But I do like here's the way I'm going to solve this problem is by planning these meals and I think we had 10 days of that and then her packers function changed and then a unit was enough again that she wasn't going well without eating fatty foods. But I'd like to thank you for the information on this podcast. I'll just change my meal. Like this is easy enough like here's my other solution I have for this.

Scott Benner 1:09:57
Katie I don't think you gave yourself enough credit at the beginning of all this So, I think you're doing really well. It sounds like where she where she at? What's your agency right now?

Katie 1:10:05
Um, let's see, I wrote this down. We started at 12.1 at diagnosis. Then at our three month, I think we were at 5.4. And then at her most recent one in February, we were at 5.10. Honeymoon happening. So Oh, yeah, it just, it's bonkers. We went on spring break vacation. And she was a solid point four per hour, or, I don't know, 10 days, we had a good run. And then two days before we left for vacation, what was appropriate to keep her steady throughout the day at night was point oh, five?

Scott Benner 1:10:49
No, that's

Katie 1:10:52
great. All right, let's get on a plane and try that for the first time.

Scott Benner 1:10:55
So more importantly, than this one, see, how's your stability? Are you able to keep away the high spikes and the low lows?

Katie 1:11:01
Oh, I was just, yeah, I think like that was it is then I am just fine with like, Oh, this isn't working, we're doing something different. And I don't wait for patterns. I just constantly change stuff and see, according to clarity in the last 90 days, we've had 1% of very high, and we've had less than 1% of very low.

Scott Benner 1:11:25
Wow, good for you. Congratulations, you're off to a great start.

Katie 1:11:30
Well, and I like I hate I hate the honeymoon. I hate that. I don't feel like I could beat them with a smart person and say like, Okay, this is their Basal rate, this is what you do for carbs, you know, just kind of get in the ballpark will be good. I feel like the shift in things is so crazy that even I sometimes I'm like, I'm doing this, I'm gonna give this even though it's like, one time it was six times more than what was appropriate two days ago. And it kept her steady and is what she needed. And I'm like, I can't expect that as somebody else that hasn't lived with us for six months, you know, like, so, I hate the honeymoon. And I'm like, I'm sure there's some upsides of it, but I can't see until we're past it. And then we like, Gee, I didn't realize that was such a big benefit of the honeymoon.

Scott Benner 1:12:15
I'm sure there will be. I'm sure. I'm sure this is gonna happen to you over and over and over again for the rest of your life. Hey, did you consider testing your other child like your trial net? Or do you not think that about what you do what you decide to do?

Katie 1:12:32
We haven't decided yet. Um, my oldest child has more anxiety tendencies. And so I don't know if we we'd have to decide if we find out and she does have markers that would we keep that to ourselves? Is that something? I don't know? I'm not against it. I just haven't taken action on that front yet.

Scott Benner 1:12:51
Does the anxiety come from the fact that when you walk outside bears and bald eagles and bison are trying to kill you or anything like that?

Katie 1:12:58
Okay, there is a bald eagle in our neighborhood. I know you're right on that oh head. My husband was biking some trails and a nearby like wooded area. And he did see like about mine last spring. So there are those, but like, we live in town, but yet we have like we call them city deer. There's like 30 deer that will hang out in our yard. And like you can like try get them off your yard because they're eating your plants and stuff. And they just look at you like they don't care that people around or they'll just

Scott Benner 1:13:30
we have that like yeah, I have a migrate migration path right through my backyard New Jersey where deer just wander through and then eat on my bushes and keep going.

Katie 1:13:40
And we've had wild turkeys so like, we do have that but they're not really.

Scott Benner 1:13:45
I do want to point out though I've never seen a bald eagle eagle or a mountain lion outside. So I think my vibe is right here. You live in a hellscape and you can be killed at any minute by wild animals. Is that correct?

Katie 1:13:57
It's not that common.

Scott Benner 1:13:59
Do you know anyone who's ever been mauled by an eagle? No. run over by a bison or bison still alive? Am I making something up?

Katie 1:14:08
They are super aggressive. Yes. Yeah. They are still like,

Scott Benner 1:14:13
Okay, well. I don't know. How'd you end up? They

Katie 1:14:16
don't they don't like wrong for you, Leo. They're all caged or they don't. It's probably the better word.

Scott Benner 1:14:22
Oh, they live on like, preserves and things like that.

Katie 1:14:25
Yeah, that's like one of the features of our town is you can go see the herd and feed them and

Scott Benner 1:14:32
they won't run your car over.

Katie 1:14:34
Well, you don't drive with them like they know I understand you're on the outside of the fence. Yeah, we're not Yellowstone right? They like stop traffic and get the wait for them to leisurely walk past and stuff like

Scott Benner 1:14:45
that. Leave the park and I thought I love that show.

Katie 1:14:49
Okay, I agree. The show was great, too.

Scott Benner 1:14:52
You made us the park and I was like, I really love that show. I wonder when it's coming back. That was I watched 1883 So I enjoyed that very much. I love westerns.

Katie 1:15:03
We haven't watched 1883 yet, maybe.

Scott Benner 1:15:06
Let's see, I really enjoyed it. I'm just saying there's my there's Scott's pic of the day, which is not not a segment where I don't do anything like that. All right, well, is there anything we haven't talked about that we should have?

Katie 1:15:17
Oh, I could talk all day long. But I don't know. It's just

Scott Benner 1:15:22
me on a slow day, do you have one more thing you want to talk about?

Katie 1:15:27
Well, I just, I don't know, I just feel like I, I feel really fortunate that were diagnosed when we were that we never managed our diabetes differently. So I never know when to think differently about any of it. But I just like to encourage those newly diagnosed people like it is gonna suck, it's going to be hard. And it just straight up takes time before you can start to get things sorted out. And sometimes you swing and you miss greatly. Like we got diagnosed about two or three weeks before school started. So then we had to do a transition into the school setting. And there's no nurse at the school that my kids go to. And so at first when I heard you texting about diabetes, I'm like, that sounds so time consuming. And that sounds awful. And then I was like, nope, Scott's right. Texting is definitely the way to go. And it has gained us so much freedom for her to go and do stuff with friends. But texting with an eight year old who had never had technology before, has its own set of challenges, like punctuation.

Scott Benner 1:16:32
can't follow what they're saying.

Katie 1:16:34
Oh my gosh, like one time she was just going little running around at recess, and I was like, You need to eat some fruit snacks, like eat three of them. Now, it she types back now and I'm like, Oh, I'm so proud of her. She must have had fruit snacks in her pocket or in her little sack or her little phone thing. I'm like, way to go. She I love my daughter.

Scott Benner 1:16:58
But she meant the question mark. Right. She thought about now that she was like now like, Should I do it now? Or she question mark? Yeah. Let me let me tell you something about how Arden breaks my balls through a texting, okay, I and she's just doing it for fun. If I have a typo, or if you know the the phone changes a word or something like that. It could be a completely cogent sentence with one word out that anyone with half an IQ point could read and fill in the blank on it. And she'll respond. What? But she's just messing with me. I know she is. So then I then I read retype it. And I fixed the word and she just Oh, yeah, I just did that. There's no, you know what I mean? Like, I know she's messing with me, Katie, I know she is.

Katie 1:17:46
I think so then we've picked up on. I know she's at school, and she can't respond within 20 seconds every time. Like, if you see it, just send me back a que. And then I'll get on with my life and stop wondering if you're doing something about our problem. So then, if she doesn't respond, like, sometimes I give it five minutes, I'll start doing like her name, I'll send an E and then an M, and then an M, and then an A, and then she'll start to respond. So her thing she does back to me is she'll be like, hey, somebody brought cupcakes for school lunch to share, can I have one? And literally like, it'll just come through my screen. And I know I'm a slow reader, but I'm still reading the first text and then she's doing em. Oh, I'm in three separate texts, because I'm not responding to her past would not however this works.

Scott Benner 1:18:38
I would be lying if I said that's never happened to me. So she's just like, Oh, finally I can I can screw back with this guy. I will say this earlier, when you said you didn't think texting was a good idea. And then you realize that was y'all should just listen to me. I'm usually right about this stuff. I I'm half teasing. And I'm half want you to know that I don't just jump on the podcast willy nilly and start saying stuff. You know what I mean? Like, I'm not, you know, I didn't I didn't think texting diabetes, then get in front of this microphone and say it the first time we were doing it for a year before I ever shared with anybody that I thought it was a valuable idea. Like I try very hard to make sure the things I say here are, you know, or at least tested through our family. You know, but having said that, I get the you know, I've heard people say I don't want a young kid to have a phone, or you know, it feels I think that I think it's possible that if you hear me talk about a number of things one time, you would think, god that sounds like so much effort. But I think you said something earlier that I agree with completely. And the idea is that just sort of like a little bit of effort now saves a lot of time later because it's specifically with listening to the show to begin with. I hear that from people sometimes. They say, oh, there's so many episodes I I don't know where to start. I'm like, I don't care. Just start somewhere here. Mount Everest. Yeah, obviously. Yeah. Oh, an interview I did seven years ago with a mother of a woman who was on Mount Everest during an avalanche. And she had diabetes, the person I was talking to didn't even have diabetes. I know, obviously, the clear starting point. Yeah, the absolute place to start for sure. You got that? 100%. Right. K. But you know, we've done put a lot of effort into making lists. I don't know if you're in Facebook, in the Facebook group right now, Isabel is helping me she's terrific. She put like the series together on lists and stuff that people can share and keep she's, she would say to me, like, why have you never thought to do this. And I was like, I mean, I have, but I don't have time. You know, like, I have to keep making the podcast. So I a lot of the things that make sense to do, like I don't do a great job with social media wouldn't be that hard to do literally don't have enough time to do it. You know, I'm going to record this show. I'm going to probably record eight hours of content this week, spread out over five episodes, and I'm going to edit five hours, spread out over four episodes and put it back up for you and keep going. I just don't have time. You know. So that's been wonderful having lists, but But back to the original point. It's this idea of, I don't have time to learn about it, I'm too busy doing it. And that makes sense sometimes. But when it comes to diabetes, it doesn't make sense. If you can't afford not to find out the right way to do it. Because you'll spend your whole life torturing yourself, you know, having like half knowledge or not quite understanding, it's better to just carve out some time now at least get some of this stuff like straight in your head. And then you can start making more purposeful decisions moving forward. And I think that's how eventually you get to the point where it is 1130 in the morning, I haven't looked at Arden's blood sugar yet today. Like I've literally not I've been up since seven o'clock, I have not looked at our blood sugar today. And I don't I can right now, but hold on a second.

Katie 1:22:06
I'm definitely looking forward to Lupe or that Omnipod five. That'll be amazing.

Scott Benner 1:22:13
Right now, and Arjun is also doing a lot more on her own right now. And so all of that is just, you know, it's part of the growth process. You know, her blood sugar has been pretty good all day. If she had left the school, and let's see what happened here, she headed off to school. I have to get up a graph where I can see back far enough. So overnight. She's like, 105, overnight. No, not overnight. On a second overnight, she was, let's say, 99. It's six o'clock, 99, seven o'clock. Anyone can see where she woke up, because she got a little feet on the floor went from 94 to 125. In about an hour, she's back down, under 100 starts to drift around nine o'clock. 120 or so the algorithms working hard to stop her. And she just Bolus for food. So she Bolus for food at like 135. So we'll see what happens. You know what I mean? Like it's just, I don't know, like it eventually. My point is, is that you'll you'll know so much about what's happening, that it won't, it won't encumbered your entire existence. But it's, it's always going to if you don't know what you're doing, I guess.

Katie 1:23:33
Yeah, I agree with that. Yeah. So just kind of wait, I think the other thing from listening to all the episodes that I gained, like, before I listened to them, I was like I'm gonna give my child the skills and the ability and that she'll be able to do this on her own. Before I learned or listen to things was what I thought was best for her. But after listening to you manage Arden, and also to people who had diabetes, I realized what a gift it is for me not to expect that of her and that, obviously, she's going to deal with this the rest of her life. And so I will know that she's kind of getting up, I'm going to Pre-Bolus for breakfast so that she can just get up and eat it. Like she knows that we Pre-Bolus should Pre-Bolus was her lunch. But why do I need her to experience that Pre-Bolus For breakfast like so I've taken on, if I'm around her, I will help her do stuff, which is the beautiful part about Omni pod. I don't have to go right next to her because there's a tube connected to her, you know, I am able to help manage her and lift this burden from her as long as she's in my household because that is something that either she has to find a significant other that's willing to help her or something that she will just have to bear that total burden all the time. And I think like I get tired of it. And I'm not even doing it all the time either. My husband is wonderful at helping me and I'm like why I would I expect this of my kid now, to do it all when, between my husband and I were just like, it's still plenty to do. And so I'm really glad that that listening to all these podcasts has shifted my way of thinking about that. And that was the last endocrinologist appointment. He was like, does she know what is going on? Do you have her do it all and I'm like, I don't want her to do it all I do have her. She makes pump settings. And you know, like, she enter stuff in her pump, every everything that happens at school she's taken care of, but I said, I don't see any reason for me not to just give her that help. While she's at her house. And she hears my husband and I. I mean, we're only six months into it. So there's sometimes we're like, I don't know, what should we do is suffer, how much should we do up front? So like, she still hears us talk about it. And she still understands like, doughnuts, she's like, Okay, let's start that Pre-Bolus Before we head to the store for doughnuts, and then she realizes like, Oh, we're eating chicken and brown rice, we better start that now that we're eating like she, I think is gaining this because it is something that we talked about in our family. But I think that would be something I would also really missed out on by not listening to all these podcasts is like, what? Why not take this burden away from her until she is older and do as much as you possibly can.

Scott Benner 1:26:15
Katie, would you do something for me? If you still like me in two years, and I'm still making a podcast? Would you come back on please? Oh, I love it. Okay, and I'm sorry to set it out so far in the future. But

Katie 1:26:27
how's that any different than this appointment?

Scott Benner 1:26:30
Well know that that is the truth right now, if you booked today, your booking in December. So that's April, May, June, July, August, right? Hold on April, March, April, May, June, July, August, September, October, November. Yeah, you're nine months to get an appointment right now. And then to record and then you don't go up for? I guess you're making a good point. It takes about 15 months to get on the podcast, if you

Katie 1:26:53
will two years from now, like are we just gonna be optimistic?

Scott Benner 1:26:56
Well, if I was you. Next summer, I'd make an appointment. But But the reason I'm saying that is, you're you've bought in to how I do this. And you're right in the beginning. And I would love to hear back from you in a couple of years, and see how it went. Like seriously, like, whether you come back on and be like, Scott, I stopped doing what you said a long time ago, or this is how we adapted it, or Oh, my God, it's still working. This is the greatest thing ever, whatever the answer is, I'd like to know what it is. I don't even care what it is. I just want to know, I want to feel your trajectory a little bit.

Katie 1:27:32
Well, good, because I mean, we are fresh, and I hear people have managed us a long time. And I know like burnout is totally possible. Like, it's even nice to know, all the options that possibly could happen. Like, there's a strong likelihood that at some point is just not going to care because she's a teenager, and I just know that, you know, I don't know, just the value, like I really want to encourage everybody. You're defining diabetes, your Pro Tip series. Amazing, great. But I think people underestimate the value to all the other episodes that are there too, because there's something from every single one of them, especially not being a diabetic person that I think I can have more empathy, I can have a better idea understanding like, why wouldn't you want to understand your child or somebody you love that's going through this better? You don't

Scott Benner 1:28:21
want to miss the conversations, honestly, I mean, the point to dot management stuff, I think is listen, I'm, I'm biased. But I think the pointed management stuff in this podcast is some of the best information available for people using insulin. But I think the conversations are where the deeper understanding comes from. Like, so. I'm glad it struck you that way. I'm very happy that you like it. All right, Katie, this is it. You gotta go. I'm having too much fun talking to you. It's over now. Okay. By the way, who knows, two years from now you might be like, so what happened? Scott was my husband. I couldn't take him anymore. I tied a fish to his back and sent him outside and a bald eagle carried him away. And that's it. That's how we handled it.

Katie 1:29:10
I'm the more outdoorsy person.

Scott Benner 1:29:13
Well, that's Well, he'll have less of a chance then again, attack. Like

Katie 1:29:18
I think it's I don't know, have you ever gone ice fishing before?

Scott Benner 1:29:23
Although you mean I didn't mean to laugh right into the microphone. No, God no. I I might cut off one of my toes before doing that. You're you're combining a bunch of stuff. I don't like the cold ice water that I could fall into and then drop. Being outside in the cold. I'm not good with that either. People drinking beer also not good for me. Exam. I don't have to drink beer to ice fish but they'll all be drunk and then who am I going to talk to That's my biggest problem with drinking is that people lose the ability to have like deep conversations. I'm very boring. I love talking about things. Like at length. I don't I don't I like hearing what people think. And, you know, I mean, it's already tough. Katie, I don't know if you know this or not. But when you put boys together in a group, basically, the conversation gets boiled down to cars, boobs and sports. So that I would say, why don't you just hang out with more women? Well, because you guys don't talk about boobs enough.

Katie 1:30:30
Then stop complaining about the people you hang out with.

Scott Benner 1:30:33
I mean, not in the problem. You don't talk about it in a fun way, I guess is what I guess is what I'm saying. But no, no, I mean, it. You know, I don't know. Ice fishing. That's what we were talking about. Oh, god. No, I don't. Yeah, go ahead. Make your point though. I'm sorry.

Katie 1:30:48
I was gonna say like, it'd be more likely that like he'd fall like, a friend invited me to go spear phishing. Have you heard about this? Okay, you got on the ice and you make a gigantic hole. And then you throw a spear at the fish instead of using like a fishing line and learn. Oh, my God. Like, there's a way bigger chance that I'll like die from slipping into. Like,

Scott Benner 1:31:11
I feel like you're telling me very cool. I feel like you're telling me a story from 3000 BC right now.

Katie 1:31:17
I mean, like you bring in a heater it gets wire, but like it's, I mean, we have experiences here. But I mean, I think you're like I incident seems way more likely than a bear attack.

Scott Benner 1:31:29
I say you say that right till the bear gacha. And then what are you gonna do? Because there's nowhere to run. You're on ice. Your little fetal slip?

Katie 1:31:37
Yeah, well, yeah, it is crazy.

Scott Benner 1:31:39
I honestly wish I had more experience in places like where you live? I think it would be. It would be lovely to know more about stuff like that. And, and to be able to see it my, my favorite, absolute favorite vacation I was ever on was at Yosemite. And we stayed there for like a week and lived in a cabin and just went out in the park every day. It remains my favorite vacation. So I might be foolish, a little bit. You know what I mean?

Katie 1:32:07
But I feel like the nice thing about you could come in experience winter for a week, and then you can leave. And then you can say like, Well, that was neat. And then you don't have to live in it for like six months. You know,

Scott Benner 1:32:20
hey, I'm gonna tell you one last little story before I let you go. Okay, and there's going to be a lot of bleeping here at the end. I took the garbage out recently, Sunday nights when my garbage goes down to the end of the street. I'm gonna say it's about a 90 foot walk from my house. Okay. It was in the 40s, the temperature the 40s. And this is me walking down the driveway. And I don't mean to offend anybody who's listening. I have the cat in my hand and I'm walking and here's what I said. I'm so cold. I swear to god. I'm so cold. I don't want to be cold. I hate being cold. I'm a baby. I don't want to be cold.

Katie 1:33:03
So right now we're like if it is 40 like we open up our windows, it's time for fresh air like oh my point

Scott Benner 1:33:09
I'm Katie, I'm not cut out for it is what I'm saying. I did. Good.

Katie 1:33:13
This winter, we had like a warmer day where it rained. Which do you think warmer weather is good, but no and winter, you want it cold? Because it rained. And then it froze like 20 below afterwards. And I literally like our neighborhood isn't like a main neighborhood. So I could have put on like ice skates and skated, like from one house to the next on the road. That's how like, awful it can be. Again,

Scott Benner 1:33:39
you might as well be the Flintstones to me. Okay, so that's enough. I we're done with us now. All right, thank you so much for being on the show.

Katie 1:33:47
Oh, you're welcome. Thank you for having me. And thank you for every single episode that you put up in all the back time. I don't think people realize how much time goes into the after. After the recordings and stuff like that I appreciate that time you've dedicated towards this is just amazing.

Scott Benner 1:34:05
Well, thank you I want to be clear, I do get paid for the ads. But I it is a lot of work. I I work harder at this than I've ever had anything else in my life. So I think at this point now I'm up to about 65 hours a week on the podcast. And and I really do love it actually. So I'm not complaining at all I just want to be clear, I am being compensated. So nobody needs to feel bad. Now if you stopped clicking on the links for the sponsors, and they go away, you're not getting this podcast anymore, or I gotta figure out another way to pay for it one way or the other. But

Katie 1:34:38
I'm saying like just even go and invest in these companies, you know? Well, that doesn't help me as much Katie but I hear Okay, nevermind. Don't invest in these wonderful companies. Just click on the ads.

Scott Benner 1:34:48
Click on the ads. If here's how I always put it to people being serious. If you need it. I'd appreciate it if you use my link. I don't want you to go in and buying an insulin pump because you feel like you want to support the podcast I mean that Be kind of half insane. If you get there and you'll like it on the pod, use my link, if you want to Dexcom use my link, you know, I mean, you're getting the hypopyon use my link, it's a huge help it's advertising, it's super simple. If people use the links, and the advertisers see this podcast as a valuable way to reach their customers, then next year, they'll buy ads again, and I will record every day as much as I can, and bring you as much as I possibly can. And it gives me the autonomy to do things that you wouldn't see as a big deal. But like, even like the defining thyroid series, as an example, that's not everybody listening to this podcast doesn't have a thyroid problem. But it's really important information. But I take a hit on downloads by putting up information that not everybody needs. That's not something I could do if the podcast wasn't supported so well. So I can kind of like Like, right now I'm, I'm thinking about defining celiac next, which again, will not cover everybody, but I still think is incredibly valuable. Thinking about how to get people on to talk about like supplements and supplementation that might be valuable, like vitamin D, and things like that, that will help people. That's not something everybody's gonna jive with. But if you guys keep clicking on the links, then I get to keep kind of expanding, like the encyclopedic nature of the podcast. And I think that's really important. Honestly, I think we need to get away from the same five I mean, to go back an hour ago, the same five stories you see pop up on diabetes blogs, and really dig into some stuff, you know, and this is how you This is how you get the autonomy to do that. So I really appreciate it. Thank you very much. It was nice you to to be so kind about the show. I really appreciate it.

Katie 1:36:46
Man a problem

Scott Benner 1:36:54
first of all, let's thank Katie for coming on the show and having this great conversation. Thank you, Katie. And then we're gonna thank touched by type one and remind you to go to touch by type one.org. And of course, I'm the pod makers have the Omni pod five and the Omni pod dash. I appreciate you buying the advertising. The five guests today. Omni pod.com forward slash juicebox to find out about the Omni pod automated insulin delivery system that they call Omni pod five. And to learn more about the Omnipod dash thanks so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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