#478 DKA on a Plane
Jen's daughter has the most harrowing type 1 diagnosis story that I've ever heard.
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Scott Benner 0:00
Hello friends and welcome to Episode 478 of the Juicebox Podcast.
On today's episode, I'll be speaking with Jennifer, she's the mom of a child with Type One Diabetes, living overseas, I guess, overseas, if you live here, if you live there, then I'm over. That's not the point. They don't live in America. And the diagnosis story that she's going to share with us about her child is in fact, the most harrowing that I've ever heard. And that's saying something. I think you're going to enjoy this episode. The conversation is terrific. She's terrific, great conversation, but my goodness, wait, wait, wait, are you here? While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with insulin.
Real quick, if you're looking for the diabetes pro tip series, they're available at diabetes pro tip comm where they begin at Episode 210 right there in your podcast player. If you're listening in the podcast player, please follow and subscribe.
This episode of The Juicebox Podcast is sponsored by the Dexcom g six continuous glucose monitor. And by the Omni pod tubeless insulin pump, you can find out if you're eligible for a free 30 day trial of the Omni pod dash at Omni pod.com forward slash juicebox. And to get started with the Dexcom, je six or to learn more, you're going to want to go to dexcom.com Ford slash juicebox. When you're finished with all that, head on over to touched by type one.org and see what they're up to. They're also on Facebook, and Instagram. links to these and all of the sponsors are available right there in the show notes of your podcast player. And at Juicebox. Podcast calm.
Jen 2:16
Hi, my name is Jen. I am the mom of two girls. One is three and one is six. And Nora is the one who has type one diabetes.
Scott Benner 2:26
And how old is Nora? She said she's the sex. Okay, yeah.
Unknown Speaker 2:30
Well, she'll
Jen 2:31
be seven here in a few months. So Gosh, I don't know where time goes.
Scott Benner 2:34
Tell me when she was diagnosed.
Jen 2:36
She was diagnosed when she was three and a half. So we've been doing this for for almost three years now.
Scott Benner 2:45
Isn't it funny? You've been doing it for like two and a half years, you know, like three years. 510 feels like a while now.
Jen 2:51
I know. Right? Like at one point, it felt like we couldn't get through the day. Like it was just it took forever to understand. And then it and then it didn't then it's just now it's part of life.
Scott Benner 3:01
When did that happen? The changeover between this is untenable to it's part of my life.
Jen 3:08
Probably when we got good at it, and by good. I mean, we understood what was happening. So we didn't always like the results. But like we understood what, why why we were why what was happening, what was good.
Scott Benner 3:21
Isn't that an interesting distinction?
Jen 3:24
Yeah, it is. It's a big distinction because I like I don't freak out when she's high. And I know why. Or she's low. And I know why. Whereas before it was, I don't know, there's I feel like there's a lot of common phrases like, Well, you know, it's diabetes and and what can you do? And, and, and I felt that way, I was totally there in the beginning and through through much of their beginning of it and, and no, yeah, there might be moments. I'm like, wow, I wonder what this could be. And eventually I'll be able to figure out I might not know in the moment, but I'll know. Eventually, it was a growth. Oh, she's getting sick. Oh, she did have a few extra skills at school today that I didn't know about or whatever. You know,
Scott Benner 4:11
I think it gets exciting when you look at the you have a Dexcom g six and you're using tandem pump. Is that right?
Unknown Speaker 4:17
That's right.
Scott Benner 4:19
I'm excited when I look down at the CGM and I look at the line and in a split second. My brain goes Oh, that pumps lights going bad. And yeah, I actually know what that looks like.
Jen 4:33
I'm getting there. Yeah, this is um, I don't know. I feel like it was there a while ago and this whole lockdown. We are actually in Amman, Jordan. And so we've had some pretty strict lockdowns over here. And the inactivity has been shockingly difficult for us to see her. See her change her activity level changes and her blood sugar. Just kind of revolts are getting sitting and not going outside as much.
Scott Benner 5:04
So she needs more insulin, I'm guessing for the sedentary lifestyle.
Jen 5:09
Yeah, she does. But she also then has a lot more weird lows like so that the minute she does something that's exciting. And at this point, even online learning is exciting. Well, I mean, it's great. Like she's in first grade, they're doing some fantastic stuff. But the minute she stops doing whatever is exciting, whether it's seeing a friend for a few minutes or being online, and she just drops, like she just drops, her body just stops. And so she's having some weird lows lately, too. So in addition to some highs, because of the extra insulin she's needed. She's having lots of drops that we hadn't seen in quite some time,
Scott Benner 5:46
I would expect and guess that you're using so much extra probably basil, and maybe even boluses for that, that inactivity, because our bodies not exercising and not moving and not using the insulin more efficiently. That it's I wonder how to like put it into a picture I guess. But it to me, it's the difference between football in the in the 40s and football today. Meaning if you if you look at offensive lineman, this is going to be a strange thing. But do you watch football? Or have I lost you already? Yeah, he got me out here. Okay, so, so offensive lineman. Back in the day, we're just these big, dopey guys who stood up and we're a wall of life, and they just kind of stood there and you couldn't get around them. And now everyone's such an athlete, right? Like they're, they're carved down to like bone and muscle. And they're, you know, they're they do things now that are absolutely crazy. And I think of that sort of similarly, meaning that when you're very sedentary and kind of doughy and slow, you just need this ton of insulin to hold down your blood sugar, this just big lazy, like flop like a weighted blanket on top of you of insulin. But when you start moving, everything starts being more efficient. And now suddenly, your body doesn't need all of that insulin that's in there, and then you slam down low. And it's
Jen 7:16
totally Yeah, I get that. Except for I'm talking about, like, cuz we were able to go outside, we're not totally locked down, except for one day a week here, we're physically able to go outside for most of the time. So we can go ride our bikes, we can go for walks, she has these dance videos on TV she likes to do to keep active inside. But I'm talking about when she's at school from nine to 230 online with very little like, their breaks and things. And it's first grade. So there's a little bit of activity, but not much when the school day ends, or her activity. And so like she's done with her work, and she has maybe an hour break, she'll drop for that break.
Scott Benner 7:53
Well, stress anxiety.
Jen 7:55
Yeah. And that's what I think it is. That's what I like, I'm coming to the realization that this is because we've only been doing two weeks, three weeks of online learning. And I'm watching it and it's it's we were lucky we were doing well here for the longest time. So she was in school. Last year, it closed down a little bit. And then she was she started school end of August, and she had been in school until a few weeks ago.
Scott Benner 8:17
And I want to amend my my answer slightly, meaning maybe it's not as much about the activity is is about the the world of life and like the stress and anxiety of listening and paying attention to focusing or just maybe doing something she's not completely comfortable with. So she's got more of a maybe an adrenaline or an anxiety high that you're fighting with insulin and then all of a sudden when that goes away, that would make sense why it drops even more quickly. Because that just like a split second. It's interesting.
Jen 8:47
It is but it's hard to predict when it's gonna happen, because it's not something that I'm watching. I can't like, I can't know she's gonna write her assignment in 20 minutes or an hour. And so when she says she's done, I know it because I see her blood sugar at this point.
Scott Benner 9:02
I know you're done cuz I'm running around the house looking for juice.
Jen 9:05
Yeah, exactly. No, no, we've actually have a diabetes drawer in her at home desk, which has Skittles right there. I'm like, go for it. You know what you need.
Scott Benner 9:14
I wonder if you don't choose a number of Skittles. And try one day as soon as school and she pops the Skittles in her mouth and see what happens.
Jen 9:23
That's what I think we're gonna go to we've talked about maybe doing a snack a few minutes before school and like maybe 1520 minutes before school and she just has has a little snack. And we'll we'll see maybe maybe that will be a good solution because it's it's now regular enough that I know it's coming. I just don't I don't quite know how to place it yet, but we're going to try a few things to see if we can sort that out.
Scott Benner 9:47
I have an interview coming up this weekend. That will be out with a concert cellist Her name's Alyssa Wyler Stein, and she told me a story while we were talking about her husband getting surgery and how her blood sugar Just shot up the entire time he was in surgery and would not come down No matter how much insulin she gave herself until she knew he was okay. To that, yeah,
Unknown Speaker 10:09
it's
Jen 10:10
just as hard. Yeah. And and it's, it's fascinating because I can see it I was shocked when she went back to school. Because they were they were back but with with masks and with like plexiglass in between the kids and very much sitting down and I finally I was there and I sat in class with him for maybe the third day or fourth day, cuz I'm like, something's different this year, like she's needing more insulin, and it's not working. So we've changed her pump, we've done a whole bunch of things, and I looked in, they don't have the socialists, they don't have the moving, they don't have the interactions that cause you to move during the day. And I hadn't thought about that.
Scott Benner 10:49
Ya know, it's that it happens to I think everyone almost and it's whether or not you see it or not, whether you can step back and, and see the causality and it's cool that you did, it's just and you'll figure it out. It really is. Yeah, yeah. You know, it's more insulin and then finding a better way of stopping below. before it happens. Yeah, you know,
Jen 11:12
yeah. And that's where we are that we started. We started a few different choices. And they're not they're not quite there yet. We've got a little bit more tweaking to do, but I have no doubt we will get there. Cool. Always. We always have. So we'll keep plugging away.
Scott Benner 11:26
So we have to figure a couple of things out here. One is, you seem to live. But you have a pretty he's a pretty white lady name, but you live somewhere else. No, it's
Jen 11:40
true. I was born in Pittsburgh, Pennsylvania, and we I haven't lived in America, really? Since I was 18.
Scott Benner 11:49
I have to tell you had you told me you were born in Pittsburgh. I wouldn't have asked if you knew what football was. That's for sure.
Unknown Speaker 11:54
Yeah. Right. Well, yeah, no, I
Jen 11:56
was born in the 80s. in Pittsburgh. So yes, I know what football is. No kidding. My parents have made sure of that.
Scott Benner 12:03
How do you leave the country? Anything? Are you running? Quickly, Jennifer? That's all I need to
Jen 12:10
know. Thankfully, no, no. The um, you know, those those career days at school, and somebody comes in and talk to you about it. And this guy said he just up and left at 18. And he went to study in Grenoble in France, and he loved his life of traveling, and I came home and I told my dad, I had my acceptance letter ready to go into u dub in Washington State. And he's like, Well, you could do that. And it really caused me to pause. I'm like, yeah, maybe maybe I could. Yeah, so I found it. I found a university and I went to university in in France, and tried to come back for a little bit of time to America after that, and it it. It didn't work. Were lots of years later, and I'm still abroad.
Scott Benner 13:00
So do you speak French fluently from that experience?
Jen 13:03
At one point, it was it was good. But that was a long time ago. I graduated in 2004. And yes, I speak enough to get by on a vacation whenever we could travel again. Um, I wouldn't call it fluent. anymore. It there just has been so little practice. And we're working on another language. Now since we're in the Middle East. No, Arabic is tricky. A lot.
Scott Benner 13:27
So a couple of things. First of all, your dad seems like a special guy to say that so freely, you know, because I've had those moments where Arden's like, She's like, do you think I could go and go to France and study fashion? And we're like, Yeah, of course. But what you mean is no, please stay here. But you don't say it.
Unknown Speaker 13:47
Right. I mean, I
Jen 13:47
don't think I fully realized that what he said how how hard that must have been until I had kids and I'm like, wow, like you want the best for them. But and that was a that was a big thing he said and and I don't know if he intended it to hit me so profoundly but it did
Scott Benner 14:05
you imagine he's he just walks into the other room. This is your mom. She's a solid dad and I just did out there I told her where she could go to France shall never go it's no big deal. You don't realize growing up in Pittsburgh make you want to go to Pittsburgh sometimes too. So we're just wherever you grow up, you know, like you're nice. And it seems small. It's true.
Jen 14:24
Yeah, I was only in Pittsburgh for a few months. And then I grew up in Washington State
Unknown Speaker 14:29
No kidding. But
Jen 14:32
yeah, I mean it's it's not that I loved where I grew up. I loved you know, I The hardest part obviously is being so far away from my family. Um, but I absolutely love it. I love being abroad. I love I love my family. I love the that we've the life we've created and all these random but not random places, and I don't know. It's cool.
Unknown Speaker 14:53
Working out.
Scott Benner 14:54
Where did you meet your husband in Paris. Okay, but he wasn't from France, either.
Jen 15:00
No, no, that was the one thing my grandma said she's like, don't go to France and meet a French guy moved to France. But now he's he's actually from Yemen. So, um, when we got married, I moved to Yemen.
Scott Benner 15:13
Your grandmother should have more specifically said don't go to France meet a guy from Yemen and move the Jordan.
Unknown Speaker 15:19
Well, right.
Jen 15:19
I know. It's true. Like, nobody could have predicted any of the craziness that has happened once I got my acceptance into France to university there, but yeah,
Scott Benner 15:30
that's really something. Okay, how long have you guys been together?
Unknown Speaker 15:34
Uh, um,
Jen 15:35
I was in Paris when you read in Paris? 2002. To 2005.
Scott Benner 15:41
Okay, so you've been out you were married a good bit before you had children then too?
Jen 15:47
Well, yeah, I, um, we. He worked for a while. And I actually decided that I wanted to live in America and work. And, and that was the direction we were going. So I went back to America, and I got a job and I loved it. And it was fantastic. And then decided to get my master's degree. And what better opportunity to go abroad than that. So I went to the University of Edinburgh, in Scotland, for my masters, and I haven't been back to America since except for vacations. We decided to get married as soon as I graduated, and that's when I moved to Yemen. Wow. So, john, you
Scott Benner 16:24
have wanderlust?
Unknown Speaker 16:26
I do? No, no, no,
Jen 16:28
this this this lockdown without traveling as Jeremy bunker?
Scott Benner 16:31
Well, that's what I was gonna get to is. So are you in a spacious palace over there. So it's not so bad. I started having this thought, yesterday, I live in what I think would be a fairly modest home in America. And I have had a mattress that my we bought, we got my mom a mattress, she didn't like it. And I didn't have the heart to just toss it. I couldn't find anybody who wanted it. I drove the mattress from my mom to my house, I'm storing it here. And two weekends ago. I say to myself, we don't have the space for this mattress, I'm gonna have to toss this mattress in the garbage, no one will take it. And as I do that, my brother says, Hey, I could use that mattress for my daughter. I was like, Oh, that's great. So my brother moved recently, and I had been to his place yet, I took him to the mattress yesterday. And I got there and thought, Oh, my gosh, his place is so much smaller than mine. And then I noticed that he and you know, is what he's not married, but his partner. They're both working in a room together. There's two kilometers set up. And I'm like, oh, boy, like, I wonder how long? That's like, forget my brother. Like, how long is that going to work?
Jen 17:50
Right. It's true. We we set Nora, we got our desk and put it in my office. And, and there are times I'm like, why? Like we all need space. And we did. Thankfully, we have enough space to kind of have everybody do their own their own thing most of the time. We're missing the outdoors? For sure. Yeah, we have.
Scott Benner 18:08
So I found myself complaining that we were all in separate rooms doing something. And now I feel lucky that we have separate rooms. Yeah. And but tell me about the protocols that you're living under? How do they because you said one day a week you can? Like how does it all work there?
You know, you need peace of mind, you need comfort, you need a little respite? What can offer that to you? Well, in my opinion, the data that comes back from the Dexcom g six continuous glucose monitor. Now, why is that? Well, if you're using insulin, if you have type one, or type two diabetes, or you love someone who does, being able to see the speed, and direction, and number of that person's blood sugar is invaluable. Let me tell you a little more. My daughter had breakfast this morning. And we missed a little bit on it. You know what I mean? Like it's been a couple of hours now. And her blood sugar is still 135. And I've been able to see over the last 45 minutes, that there's just no more impact from the insulin that we used. So we very comfortably gave her more to move this 135 number, somewhere where we're more comfortable. It wasn't just 135 By the way, it was 135 and steady, stable, not following or dropping. The Dexcom showed me that it showed me how long it had been stable. And then you get confidence from that information. You think Alright, this really is some stability. This looks like where we're where we're at now. Well, I'm 35 I'm going to do something about it. Now without the Dexcom I might be thinking I don't know this still could go down or maybe it's gonna I don't know. Like I'm gonna wait and see. But I don't do a lot of waiting and seeing since we found Dexcom I'm seeing my daughter's blood sugar on my eye. Phone, you could also see it on yours or your Android phone. And you can share that data with up to 10 followers of your choosing. Check it out dexcom.com forward slash juicebox. Sometimes you want to do something, but you just can't bring yourself to make a change. I understand that. And so does Omni pod. That's why they're offering some of you a free, no obligation trial of the Omni pod dash that lasts for 30 days a 30 day free trial, you may be eligible head over right now to find out Omni pod comm forward slash juice box. Can you imagine? Of course you can't you mean 30 days, you know how long that is? Anyway, you get this, this little whatever we're gonna call it trial, right? And you give it a whirl 30 days is enough time to decide I like this, I don't like this, let me find out, you know how I feel no pressure, maybe just like, I don't want it. And that's okay. Or maybe you do want it. And that's great. Now, you know, choice is what you should have choices but on the pod wants you to have, they want you to be able to make a decision without a lot of pressure or that feeling like oh, I don't want to make this big decision and then not like it. What if I do and if I don't like you shouldn't have to feel like that. Just head over to Omni pod.com forward slash juice box and see if you're eligible for the free 30 day trial of the Omni pod dash. That's the way to get started. If you're not looking for a big 30 day trial on the pod also offers a free no obligation demo, it's just one nonfunctioning pod that you can actually wear just to see how you feel about it. There's a lot of options over there and on the pod.com, forward slash juicebox. And I would like it very much if you went and took advantage of them. Don't forget while you're out on the internet, getting around the pod, get your Dexcom that you should be checking out touched by type one.org. And finding them on Instagram, and Facebook. They're a great organization doing wonderful things for people with type one diabetes. And all they've asked me to tell you is that they'd like it for you to know that. And for you to check them out. At touched by type one.
Jen 22:14
They've put in some restrictions. And they were they started a while ago. And then they were lifted because we were doing great, like people were concerned here when there were 22 cases a day. And it was nothing like compared to the world and to what I saw with my family in America or or even anywhere else. And so the restrictions got lifted. And then and then as a not that long ago, the cases just started going up. So they've started to put some new restrictions and so they closed down
Unknown Speaker 22:42
schools for a while
Jen 22:43
it was a fourth grade and above. And then kindergarten through third grade, I think in 12th grade were allowed to be on campus and then and that went on for I think a few weeks. And then I want to say two weeks ago now or three weeks ago now. They shut down all of the schools, nurseries are allowed to stay open, but schools are closed down. And then I think at that point is when they decided that Friday, we can tear Friday, Saturday. So Friday. There's a 24 hour curfew essentially. So there's a curfew in the night every night. I can't remember exactly what I'm not a night person. So it doesn't matter.
Unknown Speaker 23:24
Like it doesn't matter to me.
Jen 23:25
Yeah, it's it's either 11 or 12 o'clock at night, not like this in a cafe right now anyways, with everything else going on, um, but 11 or 12 at night to 6am is there's a curfew and then every Friday for 24 hours, there's a curfew. So that means you're not allowed to leave your property.
Unknown Speaker 23:42
Gotcha.
Jen 23:43
Wow. And we have an apartment so
Unknown Speaker 23:45
you're not leaving an apartment?
Jen 23:47
Well, we're not like words, like we can go run around in the garage and do some bubbles on the roof. But we're not going to go for a walk. We're not going to do anything else like that.
Unknown Speaker 23:55
Is it working? Or numbers going the other way?
Jen 23:58
For a while it wise and no, it's things are going a little more about 2025 between 2020 500 cases a day, I think and 30 ish deaths which I get is still good compared to a lot of different countries. But for the majority of the time, it was a bad day if there were 50 cases and no deaths right yeah, so there's there's been a significant change and I know that they're doing what they can to try to sort it all out while not completely destroying the economy and I applaud them for that for all the government's honestly because there's just so much balance that has to be happening right now. with everybody wanting different things
Scott Benner 24:39
was your daughter. We're both your daughter's born in Jordan.
Jen 24:44
No Sonora was born when we were living in Yemen, but we didn't have her in Yemen. We went back to America for that. Um, and then Dahlia the three year old was born here.
Scott Benner 24:56
What are their first languages English Okay, so you guys, you guys out
Jen 25:01
there, but they're learning Arabic? Yeah, yeah. No, my husband, if you were to have him, like just talk right now to you, he you would not guess that he had an accent from a country. Okay. And he can put it on obviously and he will sound like he has an accent if he tries but I wouldn't have assumed that he grew up outside of America if I hadn't asked him.
Scott Benner 25:21
So you guys are learning the language? Because you're because you feel like you're gonna stay in that they're gonna grow up there.
Jen 25:27
Yep, well, and it's their family too. Like he's maybe it's, it's half of them who they are is an Arabic speaking people. So they they need that's how they would communicate me. Obviously his family's fantastic. And they all know English. So they, they talk far too much English just to learn our Arabic very well. But that's it's lovely. Because then we, the girls don't aren't isolated because of the language. So they are learning. We're all learning.
Scott Benner 25:58
How is it? How does the healthcare system work there? What's the process?
Unknown Speaker 26:05
It's pretty great. Well,
Unknown Speaker 26:07
um,
Jen 26:07
if you're comparing it to America, it's fantastic. We're lucky to be here.
Unknown Speaker 26:13
I'm
Jen 26:15
coming from Yemen, we have access to things which is so important, especially for Nora now, we don't have to worry about getting the technology or whatever else. Um, so insulin here is equates to about $25 a vial. You don't need insurance, you don't need a prescription. You just go in and say what you need. I need Nova rapid and they give you How many do you need? Do you want some ice with that? It's literally like that simple. It takes me about like, it's a huge culture shock go into America, and we're there for the summer for a holiday or whatever. And they're like, put your prescription hasn't been renewed yet new, or you have to call this and I'm like, yeah, I forgot. Like, you have to prove that you still have diabetes. Like, it's not going away. Like why? Why do you have to keep proving it. But I get that there's a whole bunch of other things. Why you have to do that. But um, things are available here. Obviously, you can have test strips, you can have, like good meters, there's Dexcom Medtronic are both here, obviously, we, you know that we're on a tandem sum. And we have chosen to do that because we love the fact that you can upgrade with an online
Unknown Speaker 27:29
update. Yeah.
Jen 27:30
So that you don't have to be anywhere particularly in the world, you just have to have the prescription from the doctor. So nor does have to endocrinologist she has the one here that we see when we're here. was fantastic. Pretty hands off but but there when we need her in a pinch there when we have any questions, and then a doctor in America that we see once a year and we get a prescription so that we can maintain the technology that we like, because while there is Dexcom here it there on chief orangey five, actually, although i know i think they just said that they're phasing out the g4 finally. And Medtronic is also one one generation behind I think they've got the 640. It's even different from what it's 640 or 630. I know there's a little bit different because it's the year peon version.
Scott Benner 28:17
Wow, that's interesting. They can kind of balance those two worlds and end up getting what you need out of it.
Jen 28:24
Yeah, like I gotta tell you, like I have a phone with an American SIM card that's on all the time, in addition to my Jordanian SIM card, and I get random calls at the middle of the night. Excuse me, it's time for you to reorder this. And I'm like, Oh, yeah, I forgot this was the night I need to, I need to be up and do my American insurance or ordering or whatever it is. And so yeah, I mean, we're doing this because it's the best care for Nora and we're lucky to be able to do that and to have the ability to maneuver between the two worlds by
Scott Benner 28:55
just helping healthcare workers healthcare funnel through employment there or does it does everyone have it and you just there's a certain amount you pay? How does that part work?
Jen 29:04
If there would be healthcare for everybody here if you were Jordanian. But because we are not we have private insurance. Now, because we are American living in a Middle Eastern country, or for that matter, Europe, like they kind of all bundled together a lot of the times if you're trying to get everything together our insurances It's strange. It's It's very, it's very complicated. And it turns out to be more like travel insurance for me and the girls. Because we want to include America. And because because we need that bit we're there we go to visit my family in the summer. Because we need that bit in America if the girls were to break their leg or like like in Nora's case, God forbid we have to ground a plane because somebody is diagnosed with this new disease. We need it to cover us kind of everywhere. So we renew it every year and Hope it keeps on going at this point, it's my April stress every year just to make sure that it, it continues because I know that we can't necessarily be covered as what we want worldwide if we get it strictly from America, and they will not cover us from over here. And if we try to get it through a company, then it's like, ridiculously expensive. So
Scott Benner 30:24
Wow, that's a lot. So it must be great living there if you guys are willing to do
Unknown Speaker 30:29
it is no, no,
Jen 30:30
there's huge trade offs. Like we love living here where we're thankful to be in a place because my husband still does go back and forth where his job and Yemen. So we tried being in America and the 12 hour timezone change or the 10, or whatever it is, when you have Daylight Savings Time to the east, to the west coast. Is, is really hard it like it's too far away. So we're we're happy to be here in a place that has welcomed us. And I can't speak highly enough about Jordan.
Scott Benner 31:00
So you basically can't live in America for one of the reasons because your husband can't work then because the time shift is too different.
Jen 31:08
Well, no, he he, he goes to Yemen. So he still travels for six weeks, two months at a time and he'll go working him in. And then so if we want to talk to him at all, or if we want to see him or the kids, I mean, I can say we can figure things out. But the kids, obviously with a 12 hour timezone change. It is really hard in America to get those toxic, meaningful. And if there's too much traveling involved to try to get like it's a three hour flight from here to there. So it's it's possible to do. I wouldn't say simply, especially right now, but it's possible to do much less complicated.
Scott Benner 31:50
I'm just trying to imagine that your kids at like three in the morning like you're holding the phone in front of face like say hi to daddy.
Unknown Speaker 31:54
Yeah.
Jen 31:57
I'm assuming it'd be a lot like if if you give more juice in the middle of night where she's got like half an eye open and she looks at me like, what do you think you're doing? And then she rolls over and she's like, I'll see you later, mom.
Scott Benner 32:09
I stopped asking many years ago. Do you remember having a juice last night? That doesn't? Nobody remember? Yeah. No,
Jen 32:16
the only like, the only time I know she remembers is if it was particularly a bad night and she has to go the bathroom potential wakeup so that balance will come and be like she did we have a lot of juice tonight. Yes, sir. is bad night, honey. That's hilarious. It's funny.
Scott Benner 32:29
Arden only has to pee overnight if her blood sugar is high, not if it's been low, I guess she she's must have a tank somewhere she puts that juice in so
Unknown Speaker 32:37
well, um, and
Jen 32:38
it, like I said doesn't happen much. But if we completely do something wrong, it was in new food or whatever. And she's just low for an extended period of time, it actually sometimes will take her quite a bit of juice to come up. So, and I think she, she just goes about them a lot. So
Scott Benner 32:56
listen, I'm one of those people. If I'm up, I might as well go. I just figure you know, what the heck? I've maybe she's in the same part. Feeling
Jen 33:05
make sense to me?
Scott Benner 33:06
Yeah, no kidding, right? You're already in that direction? Well, how did you find? Like, how did you locate the podcast? And has it helped you at all?
Jen 33:17
So yes, it has helped me a lot. So Nora was diagnosed in a very strange way. But the way back to here where we live permanently in Jordan, it took us some time to get here. And then the rules for food and the rules for diagnosing or not diagnosing. But for managing. Because we were in three countries before we finally got back here we were in Canada, we were an American, we were here and they all had different versions of how they should be handled. And nobody was willing to kind of walk us through the huge details, although they were all very kind and very, you know, generous with what they wanted. But they're like, but you need to find what works for you wherever you're going to be with whatever technology or things you can have. So we didn't have a fantastically solid start to diabetes. Um,
Unknown Speaker 34:10
and then.
Jen 34:12
Okay, so then, and we and we were doing fine ish, we kind of got through for about a year. And then we had to redo the insurance and they didn't ignore it. They said her agency was too high and it was unreasonable for them to try to it wasn't an American company and it was something else we were trying to do. And I was like, What are doctors say she's doing? Well, like she had a seven ish seven and a half ish, a one c it was an
Unknown Speaker 34:39
awful. Um,
Scott Benner 34:40
so the insurance company used her a one C to try to deny insurance.
Jen 34:45
Yeah. And, and, and to be honest, like, it took me a long time to be okay, like, I feel like the her diagnosis was really hard on me. Um, it was a really, it was it took me a long time. Trying to be okay with thinking about it with with with with everything. So I just kind of we got by for a long time and our doctors were saying that we were doing okay that there were things we can do better and then she was denied insurance and I was like, No, like, yeah, okay, we can manage here we can we can spend 25 GED because at that point, I think she was using like half a vial or she was on a pen at that point. So we were using like, half a pen a month, like there was no enzyme being used in such a tiny little body. But I'm like, but the doctor saying we're okay, so why is this person not saying we're okay. And somehow it clicked at that point that there might be more I could do. For some reason I hadn't thought like the doctors were just saying you keep going, you're doing fine. And as they do, and they're very, you know, supportive and everything. So then we then I started looking, and I found I found sugar surfing actually. And I was like, well, this is interesting, we had never thought about some of the concepts of managing a little bit more fluidly. or concepts like giving insulin before the kid eats. And then making it up if if something goes wrong with a young kid who suddenly doesn't want to finish, you know, spaghetti or whatever. And so it got me thinking. And that's at that point, that's when we kind of dropped into the fives for her agency. And we've been that way now for a year and a half for two years. And, but I still feel like I still felt like and this was maybe five, four months ago, five months ago, in the beginning of the when she first came home from so last March. Um, she was going flow a lot. And at that point, I realized that we were masking perhaps a lot of what was happening at school with whatever was happening like it just like it was like we just kept kind of pushing through. And there was a lot of room for improvement. So while she had a pretty good center deviation, she was low a lot more than I was comfortable with. And I think the juice was causing some other issues with her maybe with her eating or with some other stuff. Like she was just full because she was being pumped a lot. And so I then I started looking, I'm like, okay, so there's got to be maybe some more information out there that I'm missing. And that's when I found the podcast and started trying to figure out what we can do to to bring to bring down her lows, like not bring down but you know, like reduce the amount of lows that she's having. The amount of essentially what he cared about was making sure that she wasn't having too much chips or Skittles.
Scott Benner 37:37
Yeah, looking for more stability. Jen, you have been on a What's the time, like, frame for that? How long did all that take?
Unknown Speaker 37:47
Which like
Scott Benner 37:48
everything you just said, a year of your life to get from A to B? Was it two years? How long did that like? Ignore I was
Jen 37:56
diagnosed five weeks after Dahlia was born. Okay,
Scott Benner 38:02
hold on, hold on, hold on, slow down. There we go. So five weeks after your second daughter's born, your first daughter is diagnosed because you said it was hard on you. And you were It sounds like you were struggling? Can we talk about that for a minute? Like the struggle you had?
Jen 38:16
Yeah, cool. So we, um, we come every summer we ever since we moved abroad, that was kind of our deal that we would still spend the summers with my family because, you know, we miss them. And then that gives us a good chunk of time to be an American, I can go visit my grandma or my sister, whoever.
Unknown Speaker 38:33
Um,
Jen 38:34
so we were on our way to America. I'm with a five week old baby. And here let me like rewind a minute, because we did go to a doctor here we did notice that Nora was acting strange, like she was drinking a little bit more. She had an accident here there despite being potty trained. And the doctor here said she was fine. Like that she was jealous of the new baby. Um, and so we're like, oh,
Unknown Speaker 39:01
my God,
Jen 39:02
I'm tired. Like, she's a doctor. She's certified in America. Like, she must know what she's talking about. And well, we'll get through this and we'll go do our annual checkup in America with the doctor there and show him or put us on a plane. And I was by myself with the two girls. And Nora went into DK somewhere between London and Phoenix over a huge body of water.
Unknown Speaker 39:26
And
Jen 39:29
she was we knew she wasn't feeling fantastic, but I just figured it was maybe nerves or I don't know if we're sure there's a lot going on. And so we just kind of we kind of like ignore this just push through on the other end is grandma grandpa will just take a nap on the airplane and watch some cool movies. And she's like, yeah, sure, mom. And then, I don't know two or three hours after this is a 10 hour flight after takeoff. She just stopped responding kind of um She, yeah, she just kind of it didn't look okay. And she threw up a couple times on the airplane. And we were lucky, actually, the head of Phoenix Children's Hospital was on the airplane with us. Then he came over and he checked her. And nobody was telling me actually what's going on. But they're like, I think it might be time for us to land the plane, really. And the first place we can land, the plane is in Canada. And I think it's about two hours away. We're too far to go back. And we're not there yet. So hold tight, and we're going to get as fast as we can to, to Canada, to the first place we can learn. And so we did, we landed in Canada. And I like I don't even remember the name of the city anymore. Like I said, there were several things that I blocked out, because literally, it was like, me and my two girls on this airplane, ready to go to Phoenix and like we are in our T shirts, and it's 100 degrees in Phoenix. And they're like, hey, so we have a couple things we need to tell you. First of all, it's literally freezing outside, and you guys are in T shirts. So here's some blankets here. Like we're gonna wrap you guys in these until you can get into the hospital, although I don't remember being cold, but I know brand new baby. Like that wasn't brilliant. Um, and then second of all, you have to have a car seat for your second kid. For the baby. Like we're in Canada, you can't just hold her in the ambulance when we land, and we can't find your car seat. So I need you to tell me whether you want to go in the air ambulance with Nora or you want to wait here with Dahlia to we find her car seat? And I was like, wow. Like,
Scott Benner 41:42
that's what that movie is about? You know?
Jen 41:44
Yeah. makes that choice. And, and and then thankfully, they did find it. And, and then we moved to the hospital in this small town. And I mean, we got there and they looked at me and they're like, so do you have diabetes in the family? And I'm like, oh, what's going on? Like, what's going on? And she told me like, she told me that Nora has type one. And I'm like, is she gonna be okay? And she's like, I hope so.
Scott Benner 42:15
Was she unconscious at that point.
Jen 42:18
She was unconscious at that point. And it took her about 12 hours to regain consciousness. And so then, once once she was conscious, I knew that we'd be fine. But you're in this teeny tiny hospital? I don't know, on the edge of Canada is the best I can describe it. Because I mean, it was beautiful flat blue sky snow on the ground. But we were we were inside. Like for two or three. Because the first little bit we were there and just trying to make sure that Nora could pull through and she's a fighter. So we're, she's always been a fighter jet. So she did.
Scott Benner 42:56
What can I tell you? This is the I mean, this is I don't mean this poorly. But this is the most like viscerally disturbing diagnosis story anybody's ever told. Like I'm vibrating. And I now understand why I love submarine movie so much. And I just did an interview with somebody last week who was diagnosed during a heroin bender. And so I'm just like, oh my god. Yeah, make sure you listen to that one, by the way. Absolutely fantastic. But, but um, but seriously, it's the it's the I mean, not that this is any stretch for anyone listening, but it's the being on the plane thing over the ocean, and understanding what DK is. I'm like, Oh my god, that kid could have just died on that plane. That's Yeah, insane.
Jen 43:45
Yeah, well, and then yeah, there was that there. There was a lot of things that I learned afterward that I'm very happy I didn't know before. Because there like I said, there really isn't type one of my family although my great uncle's my grandma's brother did have type one. Um, but we didn't talk about it. And it never came to my mind at the time. Um, and there is thyroid so I get how it could happen. But I but it's not close enough that I would have ever put signs together. And having the doctor tell us that she's just jealous. Like, I didn't think much of it. I was just kind of bracing myself for this, this huge kind of 24 hour plane travel with these two small girls. And I don't know, it's like, it took me a long time to get over the parts that were hard. You can choose I mean, because then there was a snowstorm and we couldn't leave a small hospital because we had to be airlifted to the big hospital. But because we're coming from a foreign country, it'd be quarantined for MERS or SARS or something I don't remember at the time. And then once we got to the big hospital, that's when my dad could finally get there. So I was two or three days alone with these these these two girls one hooked up to every possible tube and the other one mostly peacefully asleep. Thank God with lots of lovely, lovely people who would just kind of do Whatever for her.
Scott Benner 45:02
Do you? Do you think that this situate by the way your episode is going to be called DK on a plane? keshawn.
Unknown Speaker 45:10
Good to know.
Scott Benner 45:12
And I'm just seeing Sam Jackson run around looking for insulin and there's snakes falling everywhere. This is how it's gonna go.
Jen 45:17
No, but the thing is on the plane, nobody told me I could not get out of them. I'm like, so what is happening? And he's like, I I'm not prepared to say anything quite yet. And I think it was probably to maintain my sanity before we got on the phone. But I did not know that. This is what they were thinking that anybody had a good idea was going on the Dr. Phil, I
Scott Benner 45:35
Children's Hospital didn't ask anybody for a meter. You didn't see them test your blood sugar and nothing like that.
Jen 45:39
No, he did. He did. Oh, and I didn't put it together.
Scott Benner 45:43
Okay.
Jen 45:44
And it was a meter from the UK. And so her blood sugar appeared low. But he didn't know it's from the UK. And she's he's American. So there was some juice given like it was it was really like no, I looked back at it. And there was some things that was just it was really hard all around.
Scott Benner 46:04
Wow. Wow. That's all crazy. Geez, I swear to you, I I've heard 500 people tell me how they are their children have gotten diabetes that those initial things and I am no lie. I've never felt so stressed out my entire life while somebody was telling me that I've never felt like what people would consider triggered nowadays by any story that's been told to me on this podcast. But I started like, I got nervous and, and warm while you were talking about it and my chest got tight. I was like, Oh, Jesus, and I knew the kid was okay. By the way.
Jen 46:40
I mean, you know what, we're here. We're here talking about diabetes. Yeah, she did pull through. Like but but but like, it's taken me a long time to get here to want to talk about well, that's
Scott Benner 46:49
that's what I was gonna ask you Next is that that that scenario, that situation? Those few days? Had to I'll just put this out that had pretty good, right?
Jen 47:00
Yeah. Okay. It did. It did really well. And then we got, you know, and then we got to like, I can't remember that the phone call that when we finally landed the plane and microphone turned on a heads reception, like, Oh, my God, I got to call Omar and say he just put us on a plane, but we're five hours early from my husband. And and tell him that we're actually in Canada, and our daughter's on an ambulance. And I've got no idea of why. And then I had to call my mom and say, you know, sorry, mom. We're actually still in Canada. Like, I don't know, what else to tell you. Um, so yeah, like, but then I think back in like, I like, I don't know how I must have given my phone number and at some point, but like, there was one lady on the plane that just told Dahlia for like, five hours. She's like, No, no, you have a lot going on. Like, I'll just hold your baby so that she doesn't cry. And she did. And the guy next to me, he's like, well, I can get your bags off in London or in, in Phoenix and like, I'll call your mom and will like, sort out whatever you need. Like if you need if you can't get whatever. And obviously for security reasons I had everything with me. But like, I don't know, a pilot called later just to make sure that she was fine that everything was ended up okay. And I don't know just the kindness of people that they like.
Scott Benner 48:20
It's I'm trying to hold on to. Well, now I realize I'm gonna cry Jesus. This is I thought we were having a nice conversation for the first time. Five minutes.
Jen 48:28
Cheese. Yeah. And we were we were we still are. I don't know if I could pass you tissue.
Scott Benner 48:37
I have them here. Don't worry. I'm used to.
Jen 48:40
Okay, excellent. So I'm not the first one to make you cry.
Scott Benner 48:42
No, no, I cry once in a while. While I'm doing the I just don't usually say it. But now you got me the pilot called the ladies home. Baby. Doctor misunderstood the meter.
Jen 48:52
Yeah, like, the one thing that I think, yeah, there's like, there's not many things. I'm the times I'm going to say that diabetes has helped our life. It has added lots of extra stuff to us. But the community of people that we have because of it. And it started on that day with all these people just being kind nobody having any day was going on. But they were just like, here, what can I do? And they just kind of did it with with love. And from that day forward. I mean, the people that that I find the kindness are the ones that don't know anything about diabetes and are just like, Can I give you a hug or bring you a sandwich? It looks like you might not have eaten or slept or? I don't know. Like, I love that about this. I love that. That's the part I love about diabetes is the community of people that have kind of band together to help each other figure it all out.
Scott Benner 49:48
I have to agree with that. That's for certain. Oh, geez. Okay, all right. I don't want to hear any
Jen 49:55
good. The good news is like she made it after. So for seven days in Canada, my dad was there for most of the time. So he just had a ball with Dahlia, they checked into a hotel, and God knows what they did. But they were having a good time. And then we moved to Phoenix. And we started to figure it out. But because of the situation that I, you know, showed up to Phoenix with my, they gave me an exchange chart for food in Canada. And so I was like, okay, so I pull whip out this chart, the hospital and I'm like, so we were told that we're allowed to have one bread that can be exchanged for one, whatever, at breakfast, and this and so there had been been a few times of relearning stuff. Yeah. So it's just been, it's been a challenge, because there are a lot of ways one can deal with diabetes, some, obviously, better than others, but everybody has their own style. And so it's just been a weird journey of going through trying to learn everybody's style, because you obviously you're in a new place, you want to see how they do it, what they can do, um, and then trying to make it work for you. And so that I mean, thankfully, there's a lot of information out there.
Scott Benner 51:08
I think that one of the things that your episode is going to really, I hope drill into people's heads, and it's thanks to your wanderlust, by the way, is that seriously, because you've been in so many different places. And that actually happened during your daughter's diagnosis? Is that wherever you are, right now, someone's telling you, this is how you do it. And that's not necessarily true. There are a lot of ways people do it. There are a lot of different considerations that people give, you know, not everybody gets a chart with a Tim Hortons on it that tells you to have a Tim Hortons takeaway to breads, you know, like that? Yeah.
Jen 51:45
No, it's true. Like it was it was exactly.
Scott Benner 51:49
And, and, and not everybody. I mean, I'm still, you have to understand that when I started this podcast, I didn't, I knew what Pre-Bolus thing was, I did it for years upon years. And so I still get notes to this day, from new people who are just their minds are boggled by the idea of using the insulin in a timed fashion.
Jen 52:13
It's me, it took us It took us a year or so to even come to that car. Like I never dawned on me in the beginning. Because I mean, to be honest, nor was a picky eater when she was younger, she's better now. But I couldn't count on anything. But that doesn't mean you couldn't have worked it out some way. I hear of lots of people dealing with that in ways where you kind of break it up or you extend or something like that, if you have a pump or whatever, yeah, but um, but to tell you the truth. I was like, I didn't look for information for a long time. There was a lot of adjustment of trying to get to America and then and then see my parents and be like, okay, so mom and dad. Turns out our summer of fun, still will be fun. But there's gonna be a little more more to do. And then and then doing that, again, when we came back to to Jordan at the end of the summer, and finally seeing Omar and be like, Okay, so here is, here we are, and we have a lot of new ways of doing things, but then also been organizing that with, with what's available here in Jordan. So so taking what we could from America, but then also realizing it had to be tweaked a little bit once we got here.
Scott Benner 53:23
And so he didn't see her for months after she was diagnosed.
Jen 53:29
No, he hasn't been able to get a visa for America for for a while.
Scott Benner 53:33
That's amazing. I'm sorry. So.
Jen 53:35
So the choice was we because we had big talks about this, whether we just kind of pick up we see my parents for maybe a week or so and then pick up and come back and all catch up and figure this out together. Or I spend the summer as planned, see my parents, figure it out in America and and then come back here and we've had to make that choice. It'd be less traumatic for the girls to not pull them away from what they were expecting. Well, nor at that point, I didn't remember much, obviously. So we decided we decided to stay and I can't imagine him making that choice. It was a completely selfless choice on his part. Well, no, that's
Scott Benner 54:09
really something I'm, I'm still trying to wrap my head around. If I was, if Arden was diagnosed in one place, they gave us one set of information. And then I was just Time Warp somewhere else to another place where they talked about it differently. And just as I was probably beginning to not even understand but at least get some semblance of like normalcy about it. I go to a different place where a third set of people talk about it a different way as well. And yeah, then you try to meld all that together. While you don't know what you're talking about. That seems impossible to me.
Jen 54:45
It was which is why I think we coasted for for a while like we were just like we were getting by with all of the like, I can't Well, you must know obviously like this, just diabetes is so much to process. And then when you're told different ways to process it like it's just There was a wall plus plus there was just so much else going on. We're just grateful to all be together to be healthy and, and together. And so we kind of did what we could to keep what was normal, because I think the one thing, the only thing that was common in those three locations was, but don't worry, you can do everything you want to do, you can have a normal life, you can eat what you want, you can grow up to be whatever you want. You can be happy or healthy, you can be sad or unhappy. But it will all be your choice. You just have to kind of go through and I love that message. Like I love it. That is one of the first messages that people tell you. But there's no real assistance and getting there like you just kind of have to keep trying. I and
Scott Benner 55:40
yeah, I hate that. That the idea is espoused without the supporting information, meaning, yeah, no one, no one will tell you that. They'll just say like, Oh, this is your Basal insulin, your Basal insulins job is to keep your blood sugar stable away from food. Okay, great. No one. And then they say, and this is how much Basal insulin you get. It's it's x amount of units a day. If you're if you're, if you're injecting, or they'll set you up on a pump and go, okay, it's point three, five an hour, this is it. No one ever mentions that that might be wrong, or that it might not be enough or too much, or that if the basil is not right, then the Bolus is won't work, or that we may have set your carb ratio to a classic diet, but you're going to go eat a carb heavier diet, or you're going to have more simple sugars. And that's, that's all insane. It just really is. It's it's the idea of, I don't know, just it's teaching someone to drive a car and tell me you push that one down to go and you push that one down to stop. And there's really a little more to it than there's some nuance in there. And the nuance gets lost as it does, by the way in everything in life. When it's being explained or or disseminated usually. But nobody even says, Hey, listen, this basil is going they don't they'll say it may change once in a while. But they won't say it's going to change. You know, like be aware of that the first time you see blood sugars that are too high for too long, could be the end of your honeymoon it could be and I get that it's a lot of information. It seems like important information to me.
Jen 57:18
Well, the thing I wish that people would talk about in this obviously is worldwide is so this is what's going on right now. But tomorrow may be very different. I know you'll have no idea what to do tomorrow, but call me and then keep learning. Here's some resources like it doesn't even matter. Like if you want to start with like an old question book or a fold out of like, you know, card exchanges, I don't, I don't care whatever information you want to give them. But if the idea that what I left with a hospital was going to pick a hospital, it doesn't matter. Because they all it all felt the same. That that was that was law that was right. And, and whatever was happening was something else, or you know, it's diabetes, and it's just, it's really hard. So there's gonna be some roller coasters. And that's, that's sad, I find I find, I find the the idea of the fixed the fixed pneus of diabetes, especially in this age where you can have the technology to sort things out a lot faster. You have test strips that you can use, you have Dexcom, you have all the CGM and the pumps that can can help you figure out, figure out what you need to do to extend insulin or to watch your blood sugar to catch things that you would never have been able to catch before. Like with that technology, there should be a disclosure thing. There's a lot of new things going to be coming your way. It's not just ideas about food, but it's technology. It's it's your kids body as they grow or change through this disease, but also through life. Like if you could, if you could tell anybody something important, you should say that, yes, we could can do anything, but everything they do is going to cause a change in their body and just watch out for it. And
Scott Benner 58:59
the I find the bigger issue around that is that they'll tell you, you know, oh, today, you know, nothing. Today might not be like tomorrow might not be like the next day. And that somehow gets distilled down and translated into diabetes, you never know what's going to happen. So just write it out. Instead of the idea that, you know, today there was more stress or less activity or you ate this food instead of that food 10 carbs, this isn't going to impact you the way 10 carbs that does. There's so much in there that's easy to understand if you hear it, but instead they give you this magical idea that, oh, there's nothing you can do about this. It's just going to happen and you're going to have to let it happen. And once someone tells you that, especially in a life where until then medication has likely meant to you to have these every six hours. One of these every morning. You name it like and then that's it you don't think about it again. When you see algorithm, Jen manipulate insulin You see it, take it away and give it back and add more and bring it away. When you see that happen, you realize that a static basil rate and a static idea of how to give insulin for foods is archaic at this point.
Jen 1:00:16
Well, it totally is like a man tell you like it was shocking. We came back here and we saw a doctor not not our current doctor in Jordan, but a different one. And this was after Canada, the first place that didn't give us a fixed, fixed anything they were, they were just telling us what to dose like, I would call them and say, Okay, we're gonna eat this for lunch, and they'd give me insulin because he knew I was traveling. So they were just helping me to get to the next place. And then America, there was nothing fixed either it was a what you want, and then do it on this kind of thing. It was this tiny scalar ratio, I can't remember how it was in the beginning, because things have changed a million times. We got here and he's like, so based on her weight, she'll have this much basil, which is her heaviest meal of the day. Okay, so she'll have one unit for breakfast, she can have only this. At lunch, you'll have two units and a dinner, she'll have one unit. Because lunch is the heavy meal here. And that's that. And I'm like, I looked at him. And I'm like, but we've been doing it differently. And that seems like a really rigid lifestyle. Why? Why do we have Why do we have to do that for such a young kid? And there was no answer. And there were lots of tears when we left that doctor's office. Because I just that seemed really, really wrong. To have to take away the freedom of all that. Um, but yeah, when you have all that, when you have all the technology, there should be there should be freedom of choice, there should be. But with that responsibility, like there's no way a pancreas does nothing. Like it doesn't just sit on his back. Because I know at the beginning, when we started doing these things in our I was actually doing really well with like her time and range and things where things were going, but you could see she was feeling better. Omar looked at me and he's like, well, this, this is a lot of work. Isn't this too much work for you for us, because the brunt of it falls on me because he travels so much that I've kind of taken on the scope of diabetes. And then when he's here, he kind of if things have changed, he kind of relearns where things have changed, anything jumps back in. But I'm like, Well, I mean, your pancreas doesn't stop and my pancreas doesn't stop. And yeah, it's a lot of work. But like, she's healthy.
Scott Benner 1:02:18
Right? I am, you know, as you're talking, I realize I must be a full. Because this all seems so obvious to me. And I'm, I've been in the past kind of thrown off by the fact that it wasn't obvious to other people. And now I realize maybe it's maybe it's just not obvious, I just, it was obvious to me at some point that this needed some sort of a fluid management style. But I might really be in the in the minority still around? Well, I
Jen 1:02:57
yeah, I just think that if there's there's a lot of training that goes into small Kids Worldwide, that if an authority figure tells you something that it's the right thing, like like, not in a bad way, like they're not purposely trying to mislead you, but if your doctor says this is what you need, very much like when I was diagnosed, or any of the first doctors that this is the right amount of insulin, and it maybe it wasn't one point, the right amount of insulin, and then she just she changed and she needed more or less or whatever. Um, I, I had a hard time questioning that now my head wasn't exactly in a place where I could take on a huge new challenge for a while. And that was understanding what was going on and actually diving into and figuring out, you know, glycemic index or, or any of the things about macros or whatever else. And it's taken me a long time to get there. But I wasn't I was, I was in a place where I think I was looking for the answer to be like, what they tell you in the beginning, insulin and carbs, you figure them out, you give the insulin, you do the math, right with whatever the doctors say. And that gives you the answer. You circle it and you turn it into the teacher like I was at a place where I wanted that to be the answer. And obviously it's not a get that I understand that. And so you combine the fact that maybe you have parents and caregivers that are having a hard time with it with doctors that have done this for ages. This is the way it was done. Before you had ways to watch graphs before you had ways to figure anything else out. I mean, it's a hard change to make. It's taken me a long time to make it and like a lot of work
Scott Benner 1:04:39
wouldn't have been easier in hindsight like in hindsight, if I'm not I'm not trying to pump up the podcast I just as an example like it in hindsight, if somebody would have left the hospital with you and said, Look, this is going to take you a couple of months, but every day I want you to listen to an episode of this and too much now you'll be done. Do you think you would have skipped over Is there a lot of that turmoil?
Jen 1:05:04
I don't know. I hope so. I would I would like to think I would, because then I probably would have had a project to focus on as opposed to memories. Yeah. Because Because I left, I left with this wonderful goodie bag of ladies who knit, like a quilt for Nora. And like, these these Christmas lights that this lady gave nor because no one liked Chris, like, I don't know, like, I left with these memories, and these, these, these kindness and this gesture, and I got stuck there for a really long time. And so I wasn't I wasn't ready to. I think personally, I wasn't ready to move on for for the challenge part of diabetes. I call it what you will, and it might have been some version of denial, I guess. But um, I don't know. Like, at the same time, I really didn't think to look somewhere else. I, in my mind, there was no way that if a doctor said do this, and they said that her results are within range of what is what is right. According to the pediatric, diabetic, whatever, whatever those guidelines, things are. Yeah, they're the guidelines. If it was in that range, like Yes, I'm the type of person that would like to strive to do better, but I wasn't in a place to do so. So I don't know, I don't know how I would have. I don't know, I would I would like to think that I would have I would like to think that if somebody gave me a book earlier that was a little bit more current rather than dated. Um,
Scott Benner 1:06:35
did not feel sick to you. Like What Did you think I have a sick kid, and she'll be sick forever.
Jen 1:06:42
No. Oh, you mean? Like on the airplane or
Scott Benner 1:06:45
No, I mean, in general, like once you're home, you don't have any real knowledge of what you're doing. Do you just have that like underlying feeling like oh, I have a child who's going to have maladies and, and struggle? No, no, it didn't feel like that. Okay,
Jen 1:07:00
no, Norris Norris something else. She is bold. And she's spirited. And she's creative. And like, I don't know, nothing holds her back. Like she just she goes and, and the whole summer like, I would look at her. And I feel like, wow, how did you just go through that? And I just went through that. And I look like a train ran over me. And you're like jumping in the pool with Barbie? Like, I don't understand. Like, I want that. So it
Scott Benner 1:07:25
all seemed it still seemed very possible. You weren't like, you weren't in a no, it
Jen 1:07:30
did it? It totally did. And that's and that's part of the reason why, like, why I think I got through because if this doesn't affect her, like, this is her body, this is going to be her life forever. It shouldn't. I shouldn't project the way I feel about my experience of that same event onto you so that you have taken on my experience. Because if you don't have that experience, I don't want you to have it. I wouldn't want anybody to have that. But especially
Scott Benner 1:07:58
her, you're a smart lady, Jen, you were able to figure through all that, while you were still like, somebody felt like you've scrambled your brain, I would imagine.
Jen 1:08:08
Well, like I said, the only thing I want out of all of this is her to do whatever she wants in life. Like I don't I don't care what it is, like if she decides that she wants to move to Paris and paint the Eiffel Tower every day. And that makes her happy and she's able to do it by all means if she wants to become a doctor and you know solve all the world's problems also fine with me like but I don't want to be the reason for for stopping her. And at that point in time, it felt like my, my emotions about all of this could easily have been turned into hers. Right?
Scott Benner 1:08:42
Well, yeah, I do think it's important not to project because you're having a completely different experience than that you're
Jen 1:08:48
like for the longest time she had one of those, you know, baby patches with the blueberries and apples or whatever. And the last thing I think she remembers on the airplane was throwing that up and there was blueberry pouch all over the towel, the blanket that they gave her, and it was nasty. And for the longest time if anybody asked her Yes, I have type one diabetes. Blueberry pouch gave it to me. Um, me she was three to three and a half like she she was trying her best to figure it out. But it took me a very long time to convince her that she did not get diabetes from eating this particular pouch on this place, right?
Unknown Speaker 1:09:27
Oh, so yeah, that's cute
Scott Benner 1:09:30
and understandable. By the way, I for a very long time thought KFC made my appendix explode. I didn't really but it was like I was driving home one day, trying to rush home for the kids. middle of the day. I was out doing something. You know how us moms are running around all day doing stuff. So I'm out doing something I'm driving home trying to be on time for the kids to get home from school. I'm viciously hungry I whipped through a drive thru and I grabbed just chicken like little chicken pieces and I'm throwing them in as I'm driving. And then four or five hours later, I'm calling an ambulance. And I couldn't. I mean, not that I am a KFC person to begin with. But if you get me anywhere near it, I'm like, Oh, no, no, no, no, no, that made one of my body parts explode. And I have like a very visceral reaction to it.
Jen 1:10:20
I'm assuming that's exactly the same as if she felt no, I think we moved on from that because Dahlia had a pouch the other day and nor asked for one so and with no comment about blueberry steamy diabetes is gonna give you diabetes or something. Yeah, exactly. So I think we moved on but but like, yeah, it was a long time before she she understood that. It wasn't
Unknown Speaker 1:10:40
that.
Scott Benner 1:10:41
Jen, is there anything that we haven't talked about that you wanted to because this was very emotional, I need to get away from you.
Unknown Speaker 1:10:49
I get it. It's a
Jen 1:10:50
lot. Like I said, it took me a long time to get here. Um, no, no,
Scott Benner 1:10:55
you feel better now. Things are smooth. You understand what you're doing? And that
Jen 1:11:00
is, yeah, we have our moments. But yeah, we know what we're doing. And we know what's going to change. And we're okay, we're together. You're happy. That's that's what matters more than almost anything else?
Scott Benner 1:11:11
Well, you said something in the very beginning that I find to be pivotal, which is, you know, you trust that what you know is going to happen is going to happen. And then those things that you expect to happen, begin to be your outcomes. And then you feel like, ooh, I did that on purpose. This is this is good. I made a decision about insulin, and what I thought was going to happen happen. That's good. Now if it if it, if it later doesn't happen that way, you can at least say to yourself, I know this wasn't me. So what are the other influences here that it could have been? It opens up your abilities to diagnose on the go? I think it sounds like you're at that. Yeah,
Jen 1:11:52
we are. We are we're doing well. We're in the process of she's so she's so proud. She's trying to do it herself. So she's got to watch now and she's getting text messages from me or from Omar, and she'll give herself insulin and she'll give herself, um, juice or Skittles, or whatever she needs at the moment or check her finger. And, and so she's in the process of trying to figure out how many carbs are in things. So we had, I think there's a case it is or something other day, and she looked at me, she's like, looking at the plate. So Mom, this looks like 400 carbs, like Okay, so now we have our next project to work on. So now we're trying to transfer
Unknown Speaker 1:12:31
the information from me.
Unknown Speaker 1:12:34
Because Lord knows there's not 400 carbs, and I'm just
Scott Benner 1:12:39
as long as her pump has that little that safety thing where it can't give her too much insulin.
Unknown Speaker 1:12:44
But it does, it does. But but I
Jen 1:12:46
see her trying so so there have been a few, you know, Miss boluses, and a few missed things because she's trying to figure out how to do it. And she wants to the minute she doesn't want to, we'll pull back but she's at home. And I think this is kind of a fun challenge for her to get out. So she's got a calculator now and she's trying to give her the card counts in certain things. And she'll kind of add them together and put that in there and then check it with me. So it's been a fun, it's a fun new phase. It's gonna be challenging, I know. But I the
Scott Benner 1:13:12
way I did it with Arden is and I still do it is we put a plate out or whatever she's having. And I'll be like, how many carbs you think that is? And then I have my guess. And then she guesses and I tell her what I thought and then we usually go with what she said just to see what will happen. And you know, unless she's way off, and I'll be like, No, I think it's more or
Unknown Speaker 1:13:33
don't think we're going with 400 carbs. No, yeah, no,
Scott Benner 1:13:36
you know, what are not 400. But, but that's a good idea.
Unknown Speaker 1:13:39
I like that. It's a very
Scott Benner 1:13:40
simple way over time, like it's not going to pay. This is not a process that will pay you back in three days. But it'll pay you back over years. When eventually I pay back quickly. Yeah, right. Exactly. Eventually, you just see the plate and you're like, that's 70 done. And, and let's go Arden had a really she's having her period right now. And so she's had like a really carb heavy day yesterday. We used a lot of insulin yesterday. And she was good. She did a good job of, of understanding how much she was eating and, and at this point to, in my mind, it's a blend of how many carbs are actually there. And how many, how much insulin it's actually going to take. I don't really care about the carb count as much as I care about like that looks like she Arden had a Bolus it was 16 units. So yeah,
Jen 1:14:32
can't word out there. Yeah. 400 carbs for Nora,
Scott Benner 1:14:35
when that happens the first time.
Unknown Speaker 1:14:37
Right?
Jen 1:14:38
Yeah, see, that's the best the problem when we're trying to I'm trying to figure how to transfer this to her obviously not fully or even partially yet. But if she's having a good stable, predictable day, whatever, then or at that period of time when she's trying to eat the no problem. I don't mind her guessing her carbs and putting it in but if she's about to have PE or if she's just finishing her school or something They like that. And it's different.
Scott Benner 1:15:01
Yeah, when the variables pop up that they can't
Jen 1:15:04
Yeah, grasp. Yeah, that those are those are in my head. Those are things I feel are no, those are things that she knows yet. Um, so
Scott Benner 1:15:12
listen, I think you're using one of the most important diabetes parenting tools that exists that people don't think about all the time and it's texting.
Jen 1:15:22
As it has been revolutionary, this year, when we had school, um, first of all, her ability to read and write obviously has taken off, and so she's able to last year she wasn't there yet with this.
Unknown Speaker 1:15:35
But
Jen 1:15:37
COVID at home, she's had a lot more tech time, on her school iPad or whatever. So she understands how it's all working. And she, she enjoys that she enjoys having the independence, she gets to have playdates by herself. Without me, she gets to do things. And I think that has been a huge incentive for her to want to kind of take some of her time back or I don't have to go pop into her room and she's, you know, wanting to just rest or read a book or whatever, I can just send her a message and she'll do it by herself.
Scott Benner 1:16:03
I think it's, um, it just it can't be it can't be stressed enough how helpful texting is for all that stuff, the feeling a little you know, autonomous and being able to make adjustments more quickly, especially like the idea of going to the nurse's office is an antiquated idea for me.
Unknown Speaker 1:16:27
Yeah, you know, yeah, well, it's
Jen 1:16:29
hard right now to like the nurse obviously her hers her health center is for for sick people. Like they blocked everything off because they wanted to have a well clinic and that clinic and so to have to try to take Nora somewhere to check her blood sugar or to give insulin is just right now impossible. So the fact that she's willing to do this by herself. She has, you know, fantastic teachers that have supported her and double check to make sure that it's going well, while she's busy at school or whatever. But it's been it's been really great.
Scott Benner 1:17:00
Can you have a really good attitude, I appreciated this conversation very much, except for the part where you made me sad and upset at the same time. And I felt nervous and anxious. And by the way, gained a completely new appreciation for action stars, because you certainly were not Bruce Willis. In that moment on the plane, you were just like a and I would have been to just so you know, I'm just saying that I think those movies aren't real, john.
Jen 1:17:26
No, no, there's no way. Like, I don't see it. Like, maybe there's a few people that would spring into action. And I was like, Oh,
Unknown Speaker 1:17:33
no, no, okay.
Scott Benner 1:17:34
I've been alive almost 50 years, and I've not once seen anybody act like Bruce Willis didn't die hard. And you would think by now, you've seen one person. I think we all do about what you did. We're like somebody hold my baby. You're a stranger here. Take it. And the thing is, I
Jen 1:17:49
did I didn't. The baby was asleep in the little bed that they have, you know, on the airplane she offered when she woke up, she came to me and she's like I have I'm a mom, I have five kids or four kids or something. And you look like you need some time with your other kids. So can I just please take her for you? Like it was the kind of thing?
Scott Benner 1:18:04
Oh, nice sexually liberal woman helped you with your five kids? Yeah.
Jen 1:18:10
It was her and her husband. It was their vacation. They were going home.
Unknown Speaker 1:18:13
Like I don't know this.
Jen 1:18:14
I remember the weirdest things about this trip. Because I literally, I do not know the name of the city we landed in. But this lady like I know her life story. She told me once. She called me a few times afterwards, like kindness, absolute kindness. Lovely.
Scott Benner 1:18:29
Very nice. All right. See, there's goodness in the world everybody, all you have to do is go into decay over a body of water airplane to find it.
Jen 1:18:39
You know, if you can't find it there then you're really not going to find it anywhere.
Scott Benner 1:18:50
First, I want to thank Jen for coming on the show and sharing that story. And for making me nervous. I want to also thank the Dexcom g six continuous glucose monitor which you can learn more about@dexcom.com forward slash juicebox and of course, on the pod and that free 30 day trial of the Omni pod dash that you might be eligible for head over to Omni pod comm forward slash juice box last Of course, but never least touched by type one.org. There are links in the show notes of the podcast player that you're listening to right now. Or at Juicebox podcast.com.
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#477 The Pot Roast Story
Marina Nitze is the former Senior Advisor to the US CTO at the White House, the former CTO and Senior Advisor to the Secretary at the Department of Veterans Affairs and the founder of Task Tackler. She also 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
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 477 of the Juicebox Podcast.
On today's show, I'll be talking with Marina Nitze. Among other things, Marina is the former senior adviser to the US Chief Technology Officer at the White House. She was the chief technology officer and senior adviser to the Secretary of the Department of Veterans Affairs. She is passionate about improving America's child welfare system, the developer of test tackler and she has type one diabetes, I quickly realized how much I love Marina as we were talking, and I think you'll enjoy the conversation as well. Please remember while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. At the end of this episode, I'm going to tell you the power of story. If after this conversation ends you're interested, you can learn more about Marina at tasktackler.com or MarinaNitze.comm links in the show notes
this show is sponsored today by the glucagon that my daughter carries g vo hypo Penn. Find out more at G Vogue glucagon.com forward slash juicebox to learn more about the blood glucose meter that my daughter carries. And let me tell you something, it is the most accurate blood glucose meter I've ever seen in person and that's no BS. Go to Contour Next one.com forward slash juicebox and learn about the Contour Next One blood glucose meter.
Marina Nitze 2:02
Hey Scott I'm Marina Nitze. Nice to meet you.
Scott Benner 2:06
It's nice to meet you too. I have to say first of all, when I reached out to you it was because people asked me to and that I guess they had heard you somewhere else. They were like you have to get this person on the podcast. I was like, Okay, so now this is me sheepishly sending an email like or a message somewhere. I'm like, Hey, would you come on the podcast? And you're like, I know the podcast is like, oh, that put me in a good feeling in my chest. I felt puffed up a little. But then you big time me when you sent me your calendar. I was like, ah, she knows how to do this. Usually, I'm the one who sends out calendar like so I was like, You figured out how to work around my schedule. And you were like, here, here's my schedule, figure out where it sounds like she does what she's doing.
Marina Nitze 2:48
But then we have the double zoom links, so that but we navigated that successfully
Unknown Speaker 2:52
go to look at us.
Scott Benner 2:55
We were able to create two zoom links and then choose one. Absolutely amazing
Marina Nitze 3:01
pandemics skill. These are key pandemic skills.
Scott Benner 3:03
Why I have to tell you that prior to COVID, I was using zoom and loving it. And I was in a panic when everybody found out about it. I thought oh, they're gonna ruin my thing. But luckily, that didn't happen.
Marina Nitze 3:16
Yeah, it seems like they just strengthen it. The one thing zoom is missing is a popcorn feature. I don't know how many large group meetings you're on. But when they're like, Oh, just pass it to the next person. Like then you spend the whole time being like there's 35 people here. How am I supposed to keep track of who's gone and who hasn't? Oh, no
Scott Benner 3:30
kidding. Oh, that's interesting. Now I only ever do it one on one or sometimes, you know two people at a time. But yeah, I only use it like this and for audio, but it's been terrific. For me. That's not the point of any of this. So I guess let me just start by asking how old you were when you were diagnosed with type one.
Marina Nitze 3:48
I was nine years old in 1994 94 2004 1424
Unknown Speaker 3:50
minus 321 years ago.
Unknown Speaker 3:57
26 years ago. Oh
Scott Benner 3:58
my god. I'm never gonna get this stuff. Right. Okay. Did I submit accurate? No, I let's not let's not take time to figure out what I did wrong. 26 years ago, you were nine years old. Now. I can do this that makes you 35. Yeah. See? Now you're impressed. Right now you're like, how do I get out of this? So so you're nine years old? A long time ago? Are you regular an MPH?
Marina Nitze 4:25
Oh, yes. And I think like lenti is that maybe we call them regular NPH. And then somewhat even longer acting on a need mix all three.
Scott Benner 4:36
That sounds like a lot of fun. who managed that for you?
Marina Nitze 4:39
Primarily me from the beginning. I had a care team that was really kind of empowered about getting the kiddos responsible for their own diabetes care which in retrospect, I appreciate a lot. No kidding.
Scott Benner 4:51
So but in fairness and for clarity for people who are more newly diagnosed now in here in 2021. You were just kind of like What were you doing drawing up some insulin and shooting it like couple times a day?
Marina Nitze 5:04
Yeah, we we have a lot of structure then. So you test at certain times, and you had to have a strict number of carbohydrates per meal at a certain time. And so my care team would then adjust that accordingly. So I was in charge of counting the number of carbs to get to my set number, which I want to say was something like 30 at lunch, and then having my three o'clock snack of 15 grams of carbs. And yes, you drop the insulin and take it, but it was a very structured day, the goal being that by the time you checked with your meter, which at that time, took like 45 seconds to give you a reading, with a giant drop of blood. The goal was for you to be like back in range by the next meal, but you really have no insight into kind of what you were doing in between meals.
Scott Benner 5:43
So you drew up a predetermined amount of insulin, injected it. And then we're sure to eat a certain amount of carbs at certain times, and then hacked into yourself at the end of the day to make sure you were still alive with one blood test. Yes, wow. That's something Do you look back on that and think that seems really primitive? Or was it? Or what is your perspective of it's that you lived through it?
Marina Nitze 6:07
I think, more primitive seemed later. So when I was like, 910, it made sense to me, given the tools that we had that checking blood sugar at certain meals, and having and following the structure made sense. What seemed more primitive was like teenage years when there's like a pump. And then you're kind of left to navigate the like, any number of carbs, and any amount of you know, fat with the carbs, which I don't even think was a thing that was conceived of when I was a teenager around like, you know, you need a longer Bolus for pizza than you would for something fast acting. Yeah, I think that was, that seemed a little bit crazy to me, relative to my like, overall time with diabetes.
Scott Benner 6:45
So that's interesting for people to hear. Because in the beginning, when the outcomes aren't really well tracked, right? Then, if you set up rules and follow the rules that feels like you're doing everything perfectly, is that right? Right. And then then you start getting more insight. But the tools aren't quite there yet. And then it seems kind of harried and, and senseless. Yeah, it
Marina Nitze 7:08
felt like if I were looking back with 2020 vision, having a pump, and that level of freedom without a CGM, I think is probably what felt like, more haphazard, looking back on it, because like I remember very clearly making, I guess it wasn't Excel was Excel, even around then, like a chart for my endocrine team. When I was like 11, or 12, I wanted to stop taking a shot at lunch at school. And so I made like a very detailed chart showing like my average numbers, three o'clock, and there were something like 125, or something. And I was arguing that was close enough to 120, that I should be able to skip my lunch shot. I don't think there was no, not that level of data and structure when I was a teenager, because I was eating whenever whatever. And then there was not that sort of consistent data to work back from so I can think I think about it that way.
Scott Benner 7:58
What's what was the measure of success then, like not passing out?
Marina Nitze 8:03
When I was first, like nine through like, up till the teenagers, I think the measure of success, it was definitely still a one see. And that was back, you know, they had to do it, like a blood draw and wait, like days for them to call you back with it. But my team then like really tracked your blood sugar log, which was this little like, many, I don't know that everybody uses them today. But it was like a packet of paper that you'd carry around with you with your meter. And you'd write in each time and the number that you were, and the goal then was like all of your numbers at your key testing points should be under 120. But obviously not low.
Scott Benner 8:34
Right. When if that happened, how did that translate a one CD? You remember?
Unknown Speaker 8:40
I don't,
Unknown Speaker 8:41
that's a really good question.
Scott Benner 8:43
I'm interested but how much of it was well meaning? And how much of it actually worked out? You know what I mean? It's
Marina Nitze 8:50
Yeah, yeah, you're totally right. I don't remember I don't really remember thinking of it once too much until I was a teenager. I do remember thinking a lot about my individual numbers in the glucose log. But then, like, if a number say was starting to creep up above 120, I understood that then there were kind of two things that you input, you either increased one of your three insulins, right earlier in the day, or you would adjust your like carb count on to I felt like maybe there were simpler math than
Scott Benner 9:20
the pumping nowadays, versus when you first got a pump? Is it a fairly similar experience? like nuts and bolts wise, has anything really changed very much.
Marina Nitze 9:33
You know, it's I got my first pump in 1996. And I've been pumping ever since.
Unknown Speaker 9:41
The size of it, I
Marina Nitze 9:41
don't know that's changed very much. I was on a Medtronic pump for forever. I've only switched Omnipod in the last year. And so the pump size seems the same to me. Although maybe if you held mine up from 20 years ago, I would feel differently, but the insertion definitely like got way better. I mean, it used to be a little bit like jamming or One and a half inch thumbtack into yourself. And I still have scar tissue honestly, for my teenagers that I do not have like now as an adult, I think they've improved that a lot.
Unknown Speaker 10:09
Is that physical or emotional that scar tissue?
Marina Nitze 10:14
But I meant physical. Yeah,
Scott Benner 10:16
no, I understand. Wow, that's really crazy. Okay, so. So you're listening unless you're just really good at representing yourself online, you seem like a fairly accomplished person for your age. So, or you're an amazing writer? We'll find out in a second. But I think it's the former. And so what was your mindset coming through high school? and graduating thinking? I'm assuming thinking about college, did you know what you wanted to do?
Marina Nitze 10:44
I did, but I didn't know that there was a word for it. So I loved even from the time I was very, very young loved business process engineering, I love seeing a problem and like solving it, delivered on those logic puzzles, you can buy them kind of in the airport, and it's like St. Susie sitting next to Bob, but like, isn't sitting next to Susie and then you have to put the X's and O's.
Scott Benner 11:03
That's when Scott puts the puzzle down.
Marina Nitze 11:06
Okay, I upset to this day like I obsessively loved those those logic puzzles. And so I wanted to be and when I was in high school, I referred to it as being an efficiency consultant. And I went on to call myself an efficiency consultant. For a little period of time, I was the only Google result for efficiency consultant. And I know that because if you've noted like the dummies books series, like knitting for dummies, whatever for dummies, I got reached out to by them to write business efficiency for Dummies. And the pitch literally said, like they were googling the term business efficiency, and I was number one search result. Now today, that is definitely not true.
Scott Benner 11:45
That is how I got on the Katie Couric show. Because they were looking for a stay at home dad near New York, and they googled stay at home dad, New York, New Jersey, Pennsylvania, and my blog popped up so I got to be on television.
Marina Nitze 11:59
That is amazing. People under still, to this day underestimate SEO, I think you gotta you gotta find your keyword.
Scott Benner 12:05
Not me. I love SEO. I it's it's a large portion of the reason for the popularity of the podcast, and you have to put effort into it. It's not easy. And it's weird to understand. And I and I, I am I'm proud of myself. I do not write to SEO. Like I don't sit down and say I'm going to say something in writing now that I know will drive people because of the words I use. I do it. Like I think if my content draws that it draws. And if it does, if it doesn't, it doesn't so but yeah, that's I'll never forget, like turning to the producer and be like, how did you find me? She's like, I just googled these words. You're the only one that came up. I was like, Oh, well, then let's get me the makeup. Yes. Very odd experience. But I but I hear you say you were calling yourself something based on your Now let me ask you and try to be honest, if you can love of the process, or strange baked in type A does need.
Marina Nitze 13:06
I tell you, you can't see me I'm literally drinking out of a mug that says type A on it. So I definitely I'm an INTJ to the core, which is like the Myers Briggs mostly says you being type A so part of it's definitely my personality. But I think maybe if it is your personality, then that's the work that you're drawn towards. And you get the most joy out of
Scott Benner 13:25
Yeah, no, I agree. I think it ends up being but you're my wife is incredibly good at what she does. And you and she probably have very similar personalities. And it's the kind of work that people who don't feel that way about precision, and getting things accomplished getting them accomplished correctly. Like that sort of stuff. If you watched one of those people watched my wife work for 15 minutes, you'd think to yourself, like, Oh, I would do anything to this, like, please get me away from this. But she loves it. And she's amazing at it. And I imagine this is similar for you. So
Marina Nitze 13:56
yeah, I describe myself as someone who loves lists and finds comfort in lists. Like if I'm feeling stressed out, I will resolve that by making a list. I know many other people, including my very beloved husband, who the list makes him more stressed. Right. And so it's just acknowledging that we all have different work styles.
Scott Benner 14:13
Can I ask you a question before we get too deep into this? Do you mind? Do you mind being like a therapist for me for a second? Absolutely. If I said, Let's pretend you and I were married for a second. And you saw that I have no desire to follow a list. I keep one because I'm an adult and I have things to do. But if the 10th thing on the list suddenly becomes the most important thing to me, I'll abandon the first thing on the list and then do the 10th thing on the list. Like I'm very flexible about how I handle my days that bleed into my weeks to bleed into my month. Is that maddening to you or do you just see that as a style?
Marina Nitze 14:49
I used to that is a style and it's a style that you can accommodate. Like for example, even though I'm very type A, I also procrastinate and recognize that about myself. I find Ways to be the most productive in my procrastination, for example, I've learned that if I see tasks that are due, in two days, I'm more likely to do those than I am to do the task that's due tomorrow, what you think about it is a tricky way to keep those tasks that are due in two days from ever becoming overdue, right? Because they're still getting done ahead of time. So finding like tricks about the way that you work that way I would, and then exploiting them, is what I would recommend
Scott Benner 15:25
to teach people how to do that, or is that just something you do for yourself?
Marina Nitze 15:29
I am increasingly, I have a task app that I built for myself 10 years ago called task tackler. And I'm just now about to like make it available for other people to use. And so it may be a platform that I can, it's built the way that my brain works, acknowledging that most other brains don't work this way. But if there's like 1000 other brains that work the way that mine does, and those people can't program their own task apps, I hope to bring them some
Scott Benner 15:55
relief. I would imagine that some people listening think that I set that question up knowing what you're going to answer, but that would not be the truth. So I've just googled now to find out, and now you're thinking, Oh, my God, you didn't even read like the first page of my website. Probably. I apologize. I like not knowing too much about the people I'm about to talk to
Marina Nitze 16:14
you. I am not judging in the least
Scott Benner 16:16
Thank you. Well, if you want to judge just say it out loud, so everybody can hear it. That's fine. Wow. So you're gonna make this like a, like a public thing. Optimize your mood at relevant task details. Cool. I'm sure there. Will it have applications outside of business? Is it just everyday life? But well, it's
Marina Nitze 16:33
just everyday life. I mean, I literally like I have tasks related to diabetes. In it, I have tasks related to being a good godmother, like it really is pretty helpful. You can use it for whatever it's going on.
Scott Benner 16:43
Nice. Task isn't always going to be task. tackler calm.
Unknown Speaker 16:48
Yes. I mean, presumably,
Scott Benner 16:50
unless you get crazy and you're like, well, you just said SEO is important. You're not gonna start changing now you're
Marina Nitze 16:56
for 10 years. So I'm, it's it's a little weird to SEO could persuade me to call it something else. I only comms I
Scott Benner 17:04
have a, I have one episode of this podcast that was driven by SEO. And then it didn't end up going anything like I thought it was going to go.
Marina Nitze 17:17
Can you tell me what that
Scott Benner 17:18
was? I would be happy to I'm now telling everybody at the same time. So it's the one where I had the paramedic on to talk about how they handle emergencies, such as situations with people with type one. And I did that because Type One Diabetes tattoos is an incredibly powerful SEO search term. So everyone does it. So I get this, I get this person on. And like I just said, I don't plan ahead. So I tell her what she's gonna do. And she's excited to do it. She comes on. And I asked my question, which I will admit, I thought was a leading question about like, Hey, where's the best place to put your type one diabetes tattoo so that, you know, emergency medical people see it? And she goes, I don't recommend those. I was like, Wait, what? So we ended up having an amazing conversation, and she explained everything to me. But in her professional opinion, if you want people to know you have type one diabetes, getting a tattoo of it is the least effective way to do it. And I said, Well, what if you put it right on your wrist or on your arm she has now she was I don't know what you think I'm not looking at your tattoos while I'm trying to put an IV in you. And I was like, oh, and then she explained the whole job. And I was like, that makes a ton of sense. not what I expected for my SEO like my big SEO campaign, but it ended up being a really amazing interview.
Marina Nitze 18:36
Or you get that type one tattoo. It seems to me that that podcast is what you would actually want to land on if you're researching them. And if they're not effective, and you're tattooing yourself,
Scott Benner 18:44
I agree I also think it probably pissed everyone off that already had one like I even said like what about your chest? Like What about here? She's like, she started saying like, there's some places that might be a little better but she would not guarantee it. She was we're ripping your clothes off sometimes. And putting in lines and she goes we're not we're not reading your tattoos. And I was like, Oh, well she's like a necklace or a bracelet. I think bracelet was the best. And then maybe a necklace with a medallion on but we have bracelet was the best if I recall. Anyway, it did not go anywhere near see the one time I tried to do something like really pointed it just I was like I forget it.
Marina Nitze 19:20
I think I've heard of people that tried to get Do Not Resuscitate tattoos and they're ignored in any way. Go. Yeah,
Scott Benner 19:25
yeah. That's not a legally binding contract. I
Unknown Speaker 19:27
don't, apparently not.
Scott Benner 19:29
Can you imagine you're just an emetic, you're like, Oh, wait, no, this person has a tattoo says they don't want to be saved. I guess we'll leave now. Like, I mean, how would that work? You know? Okay, so what do you end up going to college for
Marina Nitze 19:42
political science, which you might think was connected to my later working in federal government, but they had absolutely nothing to do with one another.
Scott Benner 19:50
Okay, well, let's find out why that is. So you do an undergrad in political science? Is that all you did? Or did you do any continuing education
Marina Nitze 19:59
after that? I actually did not finish college, because I was too busy working in my company making efficiency application.
Scott Benner 20:07
Wow. Okay, so you start a company while you're in school.
Marina Nitze 20:11
I actually started when I was 12. Making, I made professional websites for different soap opera celebrities. And then I've gone on to build like websites for like family, friends, companies and things like that. And when I was in college, I was getting hired by actual company, it was the right timing, right? It was like just when they the World Wide Web was coming out. And lots people didn't have any website at all. They maybe had like an AOL keyword. And so I was it was really nice timing where they were willing to hire anyone to come and build their application. And then I got to take my logic skills, right, where I watch their current process and their current dot matrix printer and there as 400, and their chalk board or whatever they had going on, and then build an application that helped their business work better.
Scott Benner 20:54
Anybody from General Hospital?
Marina Nitze 20:56
Oh, yes. General Hospital, it was my favorite soap opera net. And Alexis, the couple was my first website.
Scott Benner 21:03
No kidding. Do you know there's there was a character named after my daughter on general hospital because of this podcast?
Marina Nitze 21:10
I did not know that.
Scott Benner 21:11
There you go. I don't know how to, like rightly so. Well, I get a message one day from a woman who says that, um, that, you know, the podcast is helping her I think she has questions or something, we end up on the phone, we're chatting, I'm like cleaning the house. And you basically if you're talking to me on the phone, I'm cleaning the house. And, and she's going online, and I bring up that I wrote a book. And I felt so silly later, because she's like, Oh, I'm a you know, I'm a writer too. But she never really says, like, in what? Like capacity. And then we kind of bumped into each other again, like online and I set her up to be on the podcast. And it turns out, I'm trying to pull it up so that I can find it. Exactly.
Unknown Speaker 21:51
She character's name is artist.
Scott Benner 21:54
So the character's name will be like, it's like she was like a district attorney. So it was like Ada Arden. And, and, and the woman's name was Kate Hall. I'm looking it up. Now this happened back in like 2019. So I have like a little clip on my website of, of the actors, like using my daughter's name and in a scene and everything. But it turns out that Kate Hall's like, you know, not just a writer, she's like the head writer, General Hospital. So
Marina Nitze 22:19
that is an awesome story. Wow, Arden was probably doesn't appreciate like how cool it is. I mean,
Scott Benner 22:24
she's, she smiled, and she was like, that's really nice. And then she should, like she showed a friend and then she was sort of done with it. But it was a it was really I thought it was an I thought it was just an amazing indication of the show, honestly, like did the podcast that helps somebody so much that you know, that they felt compelled or desirous of doing something nice like that? I just thought was really sweet. Yeah, that's awesome. Yeah. And I grew up when I was younger, coming home from school and watching General Hospital with my mom in the afternoon. So I know all about Luke and Laura, and a lot of other things that I'm not embarrassed to say.
Marina Nitze 23:03
Yeah, good for you. Watch it. I don't I'm not as religious these days. But I still I still keep playing.
Scott Benner 23:10
But you're 12 years old making websites for people. And what does that lead you to like after you kind of like, drain that? Well dry where do you go next?
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Pull out your blood glucose meter, look at it, and then question it. Is this the best blood glucose meter you can be using? You're paying for it right? You're paying for the test strips you're paying for the meter. There it is. Are you paying for the best? Are you paying for what works well? does it add something to your life? Or is it taking something away and you don't even know? Now I don't know what blood glucose meter you're using right now. But you should be looking into the Contour. Next One blood glucose meter. Something that gives you such important information shouldn't be an afterthought, make a purposeful, make a purposeful decision to carry a great blood glucose meter. The Contour Next One has Second Chance test strips so there's no wasting of strips should you touch the blood but not quite enough. You can just go back in with a Contour. Next One Try again, without impacting the quality or accuracy of your blood sugar test, that alone is a reason to do it. But if you need more, let me tell you this, the Contour Next One has a bright light for viewing at night, it's got a bright screen that is easy to read. It has a compatible iPhone or Android app, if you would like to use it. And if you don't want to use the app to collect your data, you don't have to, it's full of choice. Contour Next one.com forward slash juice box, head over and take a look. There's a test trip savings program, you might be eligible for that some of you may be eligible for a free meter. There's only one way to find out. You go to Contour Next One comm forward slash juicebox question what you're doing, make good decisions make purposeful decisions? Don't just No, no, I'm not going to almost ruin the pot for a story. But I'm not going to you have to wait till the end.
Marina Nitze 26:08
I would say rather than like one well going dry, like they sort of kind of worked in parallel. So for example, it's websites, but then like, I wanted to make soap opera games like hang man or trivia games and things. So I had to learn how to program to make those games online. And once I had that skill, then you know, when you run into the local business, or a friend's parent, or whoever it may be needs a website, then I can do that. And then I could do more than just the website. But they'll like applications that actually work for their company.
Scott Benner 26:35
And you still have this skill, like if I told you that their episode that went up the other day was about how to count fat and to Bolus for fat. And then there's an actual mathematical equation that goes with it. If I said to you, here's this equation, can you turn this into an online app? Like Could you do something like that?
Marina Nitze 26:53
Absolutely. Let me know if you need it. Are you
Scott Benner 26:55
serious? That's I wasn't asking. I was just amazed that you could do something like like that was a an idea I had while I was talking to the person. And I thought, well, that would be amazing, because then instead of this kind of difficult math that you have to do around this, this these fat calories. You could just put in a couple of numbers and be done. They could tell you like this many units over this many hours. And that would be it. And I was like that seems
Marina Nitze 27:20
I mean, you loop right around? Arden does Yeah. Yeah. There's an app fpu mod of loop that you can put in fat, and it will change your loop calculation.
Scott Benner 27:30
No kidding. Yeah, I don't think I pay very little. I shouldn't say this, but I don't pay much attention outside of my out of outside of my bubble. I guess I say this on the podcast once in a while. But I'm incredibly concerned about appearing to steal anyone's idea. So I don't like to know anybody's ideas. And I also think it drives me towards being more differently innovative about diabetes, that makes sense or not. So for sure, yeah. Okay. So you just keep growing basically, like you're, you're a person who learns how to do a thing, which leads them to another thing that leads them to another thing, and it just kept going and going. So but you still went to college? But how does how does something become so successful that you're like, I don't need to finish college? Well, I
Marina Nitze 28:14
think for me, it was a gradual thing. It was like I'm just I'm so busy. I can't like meaningfully do college and complete my paying work. And my paying work seems pretty important. So I'm going to just take, you know, one semester off, and then it's like, I'll just, I'll go back next semester. And then I moved to a different state. And then I was like, oh, I'll go back, you know, next year, and then it just kind of keeps piling on.
Unknown Speaker 28:33
So your parents
Marina Nitze 28:34
so far has not held me back in any way. So I'm not wildly persuaded to go back. Yeah, I
Scott Benner 28:39
mean, I don't listen, it doesn't matter to me. I took one college credit ever in my life, and I have the most popular diabetes podcast on the planet, so I'm okay. But, but at the same
Marina Nitze 28:49
time, okay, you're okay. That's
Scott Benner 28:52
the only thing I would say that through my 30s maybe my late 30s, early 40s. I did have that like feeling of like, I really should have gone to college. And I didn't know why I felt that way other than it felt like I let myself down or something like that. Meanwhile, didn't seem to matter for me. But did you have living parents that you had to tell you were not going to college? Amer
Marina Nitze 29:14
I, I it wasn't really a conversation. I don't know. Nobody. Nobody's upset with me. Nice.
Scott Benner 29:21
Is this do you think this is based on a lifetime of like, she's always doing the right thing? She'll be fine.
Marina Nitze 29:28
Yes, I think that that probably like I've always been a little bit outside the box, but effectively so I guess I've also with the exception of working the federal government never had like a real job. I've always worked for myself. And so I am pretty comfortable doing that. And I think other people are just used to me kind of going my own way.
Scott Benner 29:47
Yeah. I if I had to work for people again, I would be making me cry. I would cry. He really would. I very much like being able to set my own pace and and and I like to have I like being able to have ideas that I know if I went into a room and tried to discuss with four people, that they'd shoot it down, and that I just get to go, I'm gonna do that anyway. I like that a lot, actually. Okay, so you're on your way, you're doing a thing You just said you ended up working for the federal government at one point, what were you doing there?
Marina Nitze 30:19
Yeah, I was a senior adviser on technology to President Obama in the White House. And then I was the Chief Technology Officer for the Department of Veterans Affairs for five years after that.
Scott Benner 30:29
What is the Veterans Affairs job consist of? What are you trying to accomplish?
Marina Nitze 30:34
I was told on my first day of work that my job description was to redefine the art of the possible of how America honors and serves its veterans. So you know, no biggie. In practice, a lot of my time over those years was about bringing new technology talent into the VA, but really primarily shining the light on the experiences of real veterans, going out and sitting with veterans that are experiencing homelessness, who needed VA health care, but couldn't enroll and understanding like, what were the specific obstacles they are facing? And how could we as the VA, remove those obstacles?
Unknown Speaker 31:09
Did you come to any conclusions in your time, there
Marina Nitze 31:12
are quite a few. And actually, it's kind of cool. The VA right now is being lauded as really effectively delivering vaccines to veterans and their caregivers. When I was there, there actually wasn't a database of veterans. That might sound crazy, there were 64 different ones. And so we set out a course and a vision of like, what would it be like, imagine if a veteran could update their address in one place, and like the VA knew about it. And so it's pretty cool to see the groundwork that we laid in 2013 now mean that in the time of a national pandemic, the VA can really effectively deploy and serve,
Scott Benner 31:45
how much of the, how much of bureaucracy gets built, because people come and go and have new ideas. And instead of either working with what they have, or starting fresh with something, they end up just building a sunroom on the side of it and keep going like is that? Is that how it gets confusing like that?
Marina Nitze 32:04
Oh, I think it's a ton of it. I used to keep a chart on my wall in the office of like, people's beliefs when they first came in from the private sector and join my team relative to their beliefs in six months. And I think part of it is coming in and not understanding what was there before. But I think part of it is also coming in with a belief that like, your new thing can be exempt from the rules, or you can get like a waiver. Or if you just build a kind of over in the corner, nobody will notice it. And that's not how government works. Government is designed, designed to not change very quickly and to be very risk averse. And so my advice always when people are coming into a government situation is you have to understand the real rules like why is this the way that it is? And how can you change the fundamental rule or law or form behind it? Because that's how you make real lasting change. You're kind of innovation that you stick on the side? Would you say like a sunroom? Yeah, they'll just bold like there's there's a full bulldozer fleet that is designed to look for some rooms and bulldoze them.
Scott Benner 32:58
Okay. So is this in some way similar to how people get told to care for themselves with diabetes, like that you're standing in front of a doctor who's, I don't know, 60 years old, and somehow his sweet spot and diabetes was 1986. And because there's still some people who get diagnosed, they're like, they're there on a sliding scale. Like that actually happens, though, and
Marina Nitze 33:21
hear about that, or they're, they're told, like the right balance is 50% or less 50% basil, independent of what they eat, or what their basil doesn't matter,
Scott Benner 33:28
yet, no one ever discusses that their carb ratio might have something to do with the glycemic index or a load of their food, like, nothing like that. Like it like those ideas. So you get you end up getting that doctor, right. And then he starts you or she starts you in 1984 with your diabetes. And then there's no one there to, to do anything about it. So that's just the path you're on. And isn't that sort of, is that kind of bureaucracy to? Like, get like, at some point? Shouldn't every doctor in the world just get together bulldoze the whole thing and start over again?
Marina Nitze 34:03
Yeah, I think it is bureaucracy. And then you think about like, how do you fix that? Right? Because at some point, that doctor got licensed and isn't allowed to see a bunch of patients and put them on a sliding scale today, right? So like, what framework has allowed that to happen. And then you look at other things like our whole healthcare system, why is type two diabetes exploding, and people are getting worse and worse, you know, the VA spends more now on amputations due to diabetes, and to combat wounds, which should make someone raise an eyebrow like, but we keep using the same old advice of like, we'll just have another STL to inhibitor. And I think we need to fundamentally rethink how we're treating diabetes, type one and type two. As a country,
Scott Benner 34:42
we live in a world where I think we just experienced I think this is something that people don't say out loud over the last year and you know, but I don't think I mind because it seems to me to make perfect sense. But throughout COVID no one ever was like, hey, if you were healthier, you might not get as sick. He gets sick. Like we we never say that, that people like we never like that's it's always, it's always, like you said like something bad's definitely gonna happen to you. And we'll see if we can't stop it from killing you. Like that always seems to be the way we do things instead of getting in front of them. I know that's a very simple idea that is pretty obvious to people. But we never talked about it like that, like prevention, I guess.
Marina Nitze 35:23
I wish we talked about prevention a lot more and then look upstream. Like I think it's wildly unfair to blame individual people for their own health outcomes. And we have to consider like the environment that they're in. So if we have corn subsidies that make cheap processed foods that are worse for your blood sugar, cheaper and easier to access than other healthier food, if we limit what you can get on food stamps, if we don't allow food delivery for healthy food, but we allow it for, you know, super processed food, the contents of school lunch menus, the contents of hospital meals, frankly, I had my appendix out last May in the hospital, and the nurse just straight up told me there was nothing on the menu that I could eat as an diabetic. And I was like, Well, okay, um, you know, we need to change those sorts of environmental variables. For people,
Scott Benner 36:07
I'm thrilled you said that, because that is exactly how I feel. And that would have been the rest of what I said, which is, you can't you, you can't take a baby, and lock it in a room with a bag of heroin and a bunch of needles and cocaine in that corner. And, you know, 13 pot plants and some psychedelic mushrooms over here, and then later go, I can't believe you couldn't avoid drugs. Like it's, it's it really is what we do with food. And a lot of other things, too. It's just, you know, I spent most of my time discussing on the podcast, how to manage insulin, and how you can use insulin dough, you know, combat spikes, and prolonged highs and things like that. And I am totally not a person who tells people how to eat, I don't care how you eat, my daughter eats what I would consider a fairly American, you know, lifestyle. So it's not like, we're over here counting macros, and, you know, telling everybody else, it's going great, you know, and I haven't chicken to like it, you know, we're fried chicken too. So I don't, I don't care how people eat, I think it's up to you. And then I just want you to know how to use your insulin after that. But fundamentally, most people don't seem to understand that processed food or foods that aren't real, are really difficult for their bodies to process. And to get out the other end without leaving on you poor health outcomes. Wait, you don't want etc? And that's, I don't know if that's education, where a fits opportunity? Or if it's not a little bit of both? It sounds like you think it's a little bit of both, right?
Marina Nitze 37:38
Yeah, I definitely think like there's a lot of there's a lot of government incentives, their subsidies, they're thinking about, like, how dietitians are trained. What is my plate look like? And then you're right, like, what are the standards of care for diabetes? And how do we update those given today's faster insulins CGM, and knowing what we know about standard deviation, which is a number you couldn't even calculate when I was diagnosed? Yeah. And now that's a number I keep, you know, very close eye on.
Scott Benner 38:04
So So let me ask you a question. Because this is your, I didn't expect any of this to go like this. Well, I'm having a good time. So it is my I have, I have a macro goal and a micro goal for the podcast. So every day, I just tried to put out good content that I think people will enjoy, that will help them live with Type One Diabetes better in some way. And my pullback goal is that I want this idea of being flexible with your insulin, being aggressive, not you know, abiding by high blood sugars, not staring at three hundreds for six hours going, it'll come down, like you know, stuff like that to become so the norm, that it's how people are taught. But I, I can't really affect that from here. I mean, I can, but I can't reach enough people to make it happen. So my question is, if I took you and made a, you know, another job where you were in charge of that, how would you impact the health care system to talk to people specifically about diabetes in a more proactive prevention way?
Marina Nitze 39:05
I have a very specific, wonky answer for you, which is I would change the way that Medicare Advantage star ratings work. can I explain that Julie's? Okay. So right now, Medicare Advantage is a kind of Medicare, where the federal government pays an insurance company a certain amount of money every month for you, Scott, and they're gonna pay that amount of money, no matter what happens to you that month. So your insurance company, the idea is, is now incentivized to keep you healthier, because if they can get you fresh produce, drive you to the doctor, make sure you're refilling all your prescriptions on time, then you're less likely to be hospitalized that month, and then the insurance company gets to actually pocket that amount of money that month that they receive for you instead of going in debt, sending you to the hospital with ambulance rides and surgery and whatnot. And right now, Medicare Advantage has a lot of diabetes related measures and it gives doctors more money. per per patient per month, the more of these measures that they hit. And the measures include making sure everyone's diabetes is on cholesterol medication, no matter what else stressed, you have diabetes, you're on cholesterol medication, making sure everyone is on high blood pressure medication, making sure a once he is under eight, things like that. And I would really like, Look, this is the heart of like payment and healthcare in America, how can we change those measures so that they're more aligned with your actual health care outcomes and enjoying a successful life with diabetes? And not? I mean, I don't know 8%, I wouldn't feel good at 8%. And that shouldn't be the goal, to my mind. And if we want to change the incentives of the healthcare field, we have to change where the money is directed.
Scott Benner 40:41
And is there a way to do that within the system now? Like, where would the system have to be completely revamped to support that?
Marina Nitze 40:48
I think if you got enough of a coalition to support and you do it incrementally, maybe we could change the Medicare Advantage star rating from an A one C of e to 7.5. And then we could bump it down a little bit more and give those doctors and those patients more tools like you provide right to help get those numbers more in check. I don't know that a lot of diabetics know how to really address a 300 quickly or know that there's no muscular injections or know the impact of low glycemic index foods on how they may Bolus for one food over another. And I think there's a lot of these tools that can be taught and people deserve. We can all make our individual health choices, but people deserve to have a full menu of options.
Scott Benner 41:27
Yeah. So I think that the the least common denominator way that we do a lot of things. I think it's lazy. And I don't think it's even true. Like I think the I think the messaging is, and this is the you know, the example I frequently use, I think the messaging is if there's 20 kids in a class, and three of them are brilliant, and 14 of them are average, and three of them are struggling. Well, we don't want to, we don't want to leave the three behind who are struggling. So we'll, we'll bring the entire course level down so that they can keep up with it. And in my mind, what that does is it eliminates the idea that the other 17 kids might Excel. And so I think we do that with health care, but it's around they do it around safety. They say well, we can't you know, we can't tell people how to Bolus, you know, aggressively, they'll kill themselves. But that doesn't happen. It's just what people say. It's the and I think they say it because they don't know how to explain it. And if they say that they can't explain it for safety reasons, then they'll never get called out for not really understanding it to begin with.
Marina Nitze 42:30
I think the risk frameworks are all pretty perverse here. So you have an endocrinologist who is arguably afraid of being sued for your really bad hypo glycemia event, but will never get sued. If you have complications from being high or even tech, you failed a test because you were 300 for so long that you had brain fog. But then you meet other health professionals like an ophthalmologist who could look at an A what your endocrinologist might say, oh, you're 6.5 a one see his thumbs up and you know, ophthalmologists will look at it like, Oh, we got to tighten this up. Because I want to prevent you from complications are you talk to an obstetrician for a pregnant diabetic, and they're upset at any blood sugar over 100. And it's a totally different framework, but they're their risks, they're worried about you and your baby. And so I think a lot about how do we align these risk frameworks more that the risk can't just be about going low. And there's also steps toward that, like, I don't suppose you recommend people get super aggressive with insulin tomorrow, if they kind of barely understand how it works today, like there are steps in that direction,
Scott Benner 43:28
you don't start off at the ninja level, you you in my mind, it's you understand what basil is for, you get it set up, well, then you start understanding how to Pre-Bolus your meals. And then you begin to understand the different impacts of foods. And then you go from there you go, you stay flexible, you understand that fat might keep carbs alive in your system longer you like start building on it. But in the beginning, in my mind, the core of it is basil Pre-Bolus saying glycemic load index, if you can get those three ideas, right, that's an A one c somewhere in the sixes with very few lows. But you don't yet I don't, but you can't just have your your your basil can't need to be 1.5 an hour, but it's actually point six. And you usually try to correct the high with two units, then all of a sudden, you're like, I'm gonna use seven. Like that's not, it's not what we're talking about. Like there's a there's a balance. And I think it's why it works in podcasting, because you don't need to understand that all in one day. And you get to kind of like listen through it, hear people talk about it, and go and then find what's applicable to you and what isn't, and then set it in place. Now are there going to be those three kids in the class listening to the podcast who never quite get it? I assume Yes. But I pride myself on talking about it in a way that I think everyone can understand it. I think that's valuable across the board. But I also am just not the kind of person who is willing to let 17 people's health slip because three people might not understand what we're talking about. But I don't think that's valuable.
Marina Nitze 44:58
And it's like what we're talking about earlier. We're like you and I have different personalities with lists, but we find ways to make them work for ourselves. You know, I totally believe that there are some people that love regimen and they can MBI routine, like the same as I was on when I was nine or 10. Like might work just fine for them today, they like eating the same amount of meal at different times different day. And they like that regimen. And that's great. There are different people that are super confident, like sugar surfing with like, large amount of carbs, and there's lots of space in the middle. And also we have different bodies I have, I am super, super insulin resistant in the morning, to the point that I do not eat breakfast, I haven't eaten breakfast for 22 years. And that works for me, I have coffee, you know, totally happy that someone else may need breakfast. And they absolutely need to find a different way for that to work. And we all have to kind of work work within those frameworks, right?
Scott Benner 45:44
So my idea of infiltrating from the outside the healthcare system isn't really going to work because they're not incentivized to teach people these things.
Marina Nitze 45:55
Well, unless you get your listeners that grow up and go to medical school, and become doctors, like there's a long game here. So we
Scott Benner 46:01
do have a few people who are becoming nurse practitioners, I have made a couple of CDs, which they don't call them CDs anymore, but I am not willing to learn the new acronym, so. But I have a few people who are becoming CDs, there are a number of people who are who find this podcast through their doctors direction, which I think is very progressive and amazing. So you're saying I might have an impact that I don't, I'm not gonna get to see what you're getting on here. Right?
Marina Nitze 46:28
You're definitely having an impact. And it's like, there's a lot of levers in the system. And if you can start influencing other diabetics to even just understand what's possible, I think, you know, knowing what is possible, even if you maybe make offset choices for your own lifestyle or activities or whatever, we should all know that we are entitled to have like normal non diabetic a one sees and experience like not having the the roller coaster of Oh my God, I'm crashing low and then I overtreated enough. Now I have brain fog. Because I'm high and I feel like crap all day. You know, we should have, we should know that there are ways in a different direction to me. And we all have different ways to get there. And not everybody's going to choose to do that work.
Scott Benner 47:10
And that's, by the way, if that happens, that happens, I don't feel encumbered by everyone's health. But you should at least have the opportunity to know that thing exists and make a decision for yourself as to whether or not you want to implement it or not. But you shouldn't be told that you're a one sees, okay, because it hits some arbitrary number that was set by a board of people who don't have diabetes. And that's just how the doctor ends up getting paid by somebody if you're a once he comes in under a number like that's not health, like I very clearly on the podcast, I say that most doctors give, do not die advice. And they give it the exact reason you brought up earlier because if you die today, it's their fault. And if you die 12 years from now, it's your fault. And that's what they want. They want the fault to be with you not with them.
Marina Nitze 48:01
Yeah, and we have other numbers like an A one C is a measure, right? And you and I both know, but when you and I both have enough tools that we could game it if we needed to. And there's other measures that you want to take into account too, like a standard deviation if you have an ANC of 5.5. But it's because you're 40 halftime and 200 other half the time like and you're at standard deviation 60. You know, you're probably way worse off than someone with a one to six,
Scott Benner 48:24
you're screwed and the doctor gets paid. And that's Yeah, that's not the way to go. So I noticed you're not in government anymore. Was it exhausting? And was there was there something fulfilling about it that you would like Could someone get you to go back?
Marina Nitze 48:44
It was absolutely exhausting. It was also like the most impactful amazing scale of work ever. And I was a political appointee. So I got kicked out with the with President Obama the same day that he left, but I actually work in foster care reform now. So I do I would say I caught the public sector bug. I'm just in a different part of the organization at the moment.
Scott Benner 49:05
Okay, what do you do for that?
Marina Nitze 49:08
I similarly, I work with different states doing business process reengineering, to help them, find family for kids faster, and help get those families approved for kids to live with them faster.
Scott Benner 49:19
So the kids get out of homes and into out of like foster home institutions and get into real into single family homes.
Marina Nitze 49:27
Now, the goal for me is always if a kid has to be taken away from their parents for health and safety reasons, and they should be placed with an adult that they already know and trust, whether that adult is their grandmother, their baseball coach, their moms, or their friend's mom. And then we should resource that family in that placement so that it stays together so that a kid if they do have to enter foster care doesn't have to move around a bunch. What happens today is you know, you're taking your place in a home that is generally a very poor match with strangers and then you move 17 more times, and then we act confused why you're acting out and you're not doing well in school. Do kids
Scott Benner 50:00
become commodities in that system because the people who take them in are paid to have them,
Marina Nitze 50:05
I have seen a lot less of that. But you do have to keep in mind that like in a group homes, there is a huge financial incentive for group homes to be full. And they there's a lot of money to be made in a group home environment, I think there's a lot of wiggle room in the middle like we need to acknowledge, like, there's so much stigma from a Little Orphan Annie around paying a foster parent anything. But we need to acknowledge that if we don't have any in between space, then the choices are just you're in a foster in his traditional foster home where they only get reimbursed for your kind of food and clothing. Or you're in a group home, where we're paying a full time staff to take care of you. And there's definitely some middle ground where we could pay an experienced foster parent to help a child with a higher level of needs. But stay in a home environment
Scott Benner 50:48
is that is the concern that when you pay, then some people take advantage of the system. But isn't that usually far fewer than who are actually doing good with the way it works?
Marina Nitze 50:59
It is the concern and I would say it's far and away. It's people that are doing good, good work. And they're really, really sticking their necks out for these kids. I mean, nobody is getting no individual foster parent is getting rich. If you look at the foster parent rates,
Scott Benner 51:11
it's barely covering the cost of a kid's shoes and clothes. If you put them with people that they know previously, does that physically make them more likely to stay together as a unit long term?
Marina Nitze 51:23
astronomically? Yes. And how astronomically better outcomes in terms of high school graduation not being pregnant or not, you know, parenting before they're ready. finishing college, getting education, employment, making the same amount as their peers. I mean, the the outcomes for foster kids are just abysmal right now.
Scott Benner 51:44
What, um, where's my question? I had a question, oh, once a child's removed from their natural parents, what's the likelihood that they'll go back? And is it usually a good situation where it's
Marina Nitze 51:57
about 5050 likelihood that they'll be reunified. And there's a lot of hoops that parents have to jump through to get their kids back. A lot of hoops. So, while some kids do come back into care, I would say that there's a lot of focus on reunification. And to make those successful, a lot of our focus needs to be on wrapping around supports around those birth families, like a story I tell all the time is we very regularly take, you know a mom or dad, they can't afford daycare, they're working really hard. They leave their kid home alone, because they don't have the money for daycare, some neighbor calls in a neglect report because the kids have been left home alone. We remove the kid we create tremendous trauma to this family and we placed them with strangers. And then we give those strangers money for daycare. Yeah,
Scott Benner 52:39
it could have given the parents for the daycare.
Marina Nitze 52:42
Yeah, we could have I put daycare in originally and kept a family together.
Scott Benner 52:46
When I don't want to be cynical. But when people don't get through the reunification process, is it sometimes because they're I don't want to say happier. But I guess happier is the word. Are they happier that the kids not with them anymore? Does that happen?
Marina Nitze 53:02
I wouldn't say that I would say some people have deep struggles with drug addiction and with mental health challenges that as a society, we are not doing a great job of helping them remediate. And a lot of people try what I see are birth parents trying and trying and trying and jumping through tremendous hoops to get their kids back. How do you help?
Scott Benner 53:21
So it's just very interesting that you that you said mental health and drugs is like your example. So it are those two things, drivers behind problems and a lot of sectors of society.
Marina Nitze 53:35
I use, I work in veterans and I work in child welfare, I would say like in those three spaces, like they can be very problematic.
Scott Benner 53:42
Can you help people when they're in those scenarios, like, that's always the like, I know you the goal would be to win that you would want to and I would want to if you put me in charge as your magic wand me I was like, I definitely be like I'm gonna help these people. But I've also interviewed people who are bipolar, for example, and you're talking to them One moment, and everything's right. And then you talk to them three days later, and you're like, well, that's not the same person I spoke to three days ago. And I don't know, like, how do you? How do you help people in that in those scenarios? When they're gripped by something other than themselves, I guess if whether it's a mental illness or if it's drugs, something that's outside of their control, I guess, I don't know if I'm using the right word or not. But that's how it feels. It feels like an outside driver to me.
Marina Nitze 54:32
I think there are a lot of successful treatments for mental health and for drug addiction challenges, but we need to make them available to people and we need to make them available people where they are. And I actually mean that quite literally in the sense that if I if I say you know okay, I've taken Arden from you and to get her back you need to go to therapy. Four times a week. Therapy is two and a half hours away from you. And you can only get there by bus and I'm not getting a bus pass and then I also by the way need you to visit her at In order to account for court visitation, and then I also need you to get stable employment and stable housing, and I'm not going to help you with any of those things go while you're already struggling, potentially, you know, presumably deeply struggling if you've had your children removed, like there's even missing things about, like, how many providers are at bus stops? Like, we don't know that that isn't tracked. And that might seem like a very, very basic thing. Do we send reminders to birth parents about court dates, you know, like, they may not have a Google Calendar like yours in mind that is so full that, you know, we're getting alerts every five minutes. And we I think we really could do a much, much better job as a system of helping parents to succeed and not set them up for failure
Scott Benner 55:37
is a is a big part of helping people not judging them.
Marina Nitze 55:42
I think so absolutely. You have to give everybody like a really fair chance at succeeding, and you have to really recognize that not everyone is starting from the same point on the course,
Scott Benner 55:52
I have to imagine, too, you have to not apply your judgment of success to their lives as well. Like, like, if if I don't either, so I'm not sure what I mean here. But there seems like there's a whole section of, of our culture, who wants everything to be perfect for everybody. And which is a lovely idea, except that when something could be perfect for another person, and it might not be perfect to you. Is there? Is there a problem there? Where we're trying to get people to something that they're just unaware that even exists? Or couldn't get to even if they knew it was there? So it makes sense?
Marina Nitze 56:32
Yeah, I'm not sure where you're going, I would say it's less that they can't get there. And it's more that there are different standards for communities and for families in different places. And it's wildly unfair and judgmental, to hold everybody to one standard. Like as a quick example, many states require foster parents to include like grandma's or Auntie's that are taking you in, to have recycling, to have a working oven and stovetop, to have the right quote, unquote, number of windows in your bedroom, which fits for a standard colonial home. But Native America, I live in a colonial style home. But for a Native American long home, they have the quote, wrong number of windows in their bedrooms. And when you just have a lens that the whole world looks like my world, you miss those things. And then you start, you know, traumatizing and separating families, because you're not there understanding that they have different and perfectly acceptable homes, they just are shaped a little bit differently.
Scott Benner 57:27
Is the windows thing for egress during fires and other emergencies? Is that what that's for? Yeah, I couldn't imagine any other reason. Like, that's the only thing that popped into my head. So. So then this thing, that we're taught this big idea around foster care. And if you switch real quick and talk about, you know, health care, or diabetes care, it is all really arbitrary rules that have been slapped on top of other things, because at some point, because at some point, some kid died in a fire, right, and the fire was on one side. This is like when I rented my first apartment with my wife, we were signing the contract. And it said explicitly on the contract, that you could not swim in the pool with an open wound. And that made me and that made me look at the woman. And I said, how many people try to swim in the pool with open wounds? Because my brain said if it's in the contract, it's a problem. It's something they've come up with before she goes, Oh, it's happened a number of times. And I laughed, because I thought it was funny, except that there's some kid who doesn't get placed in what would be a good foster system. Because 20 years ago, there was a fire on the east wall. And that was the only window in that room. That's the truth. Right?
Marina Nitze 58:41
Correct. Yes. And we really need to rethink fundamentally, what these rules are and how we can make them more flexible. The goal is that you can escape from a bedroom in an emergency. I'm okay with that goal, but I'm not okay with counting the number of Windows.
Scott Benner 58:55
Yeah, you know, I don't know if I've said this before. on here. I'm sure I have at some point. But there's this little parable about a girl making a pot roast with her mom, and the mom.
Marina Nitze 59:05
I love the one from Reader's Digest. I
Unknown Speaker 59:07
tell people,
Scott Benner 59:08
I just I think it's it's so insightful. And it's it's what I use around diabetes to tell people like, there's no way to do something. I know, you think there's a rule? Because you heard somebody say, and then you went on Facebook and somebody said, Oh, that's what my doctor said to and they're like, Oh, I heard at one place. And her doctor said it, obviously a role. I wish people understood the freedom that I have in the way my brain works. I am not encumbered by what any person who came before me thought. And I think, you know, we could dig into that I grew up adopted and I was brought up in a lovely home with wonderful people, but I may have been a little I may have been a little more intellectually strong than they were. So I was always figuring out my own things. But more importantly, I was never relying on what they said to me to figure things out. I was always looking for my own answers. And I just I'm such a big fan of looking for your own answers. And, and this just seems like what we talked about all the time, but there are people look at you, you're out there like there's somebody out there right now going I have a seven, three a one. See, I'm winning, because somebody said a number for reasons you brought up earlier. And meanwhile, a 731 C is terrific. But there's more room under that, and a way to get to it and no one's ever going to tell it to you. Yeah,
Marina Nitze 1:00:30
my I'm not here saying anyone with a seven three a one C, you know, Dad, I'm saying that I want them to know that there are other tools out there that they could leverage that don't mean they have to give up, you know, their life or they have to like follow a clock. There's ways they can do it that work with their lifestyle, exactly how I feel. And
Scott Benner 1:00:46
this whole, the last five or six minutes of this conversation have made me angry, not at you. But can you imagine if I was like I'm mad at you. But just that whole idea. That arbitrary nature of things is is bothersome to me that we have rules we follow for reasons that don't even exist anymore? Or maybe we're never good reasons to begin with or just stop gaps for somebody. I really want people to think about that. Like how many things do you do in the course of a day that are senseless? And they seem utterly, like they're the most important thing that ever happened? Oh, my gosh, so how do you Okay, so now you you recognize that? And I don't know what you do? Like, I don't understand how to fix anything, doesn't it feel like we're just building on top of that? Like, like, how do you how do you start fresh with things?
Marina Nitze 1:01:40
It's definitely frustrating. And I think it does this sort of stuff. It's one person at a time and and helping one person learn that, oh, that is a tool that could work for me or that person sounds like me, I could learn from what they're doing. And just again, knowing that there's hope, I think I spent a long time having diabetes thinking that 6.5 was like the holy grail, and he couldn't do any better. And I'm really grateful to know differently now. And I want other people to know that too.
Scott Benner 1:02:07
Well, I how do I not have you on Twitter? What did how did this happen? You know, I only know you by your little picture. Like when someone likes when somebody said your name to me. I was like, I don't know who that is. And then as soon as I looked for you, I was like I know that face. Isn't it weird how social media works? I'm like, that person I'm aware of. Then you look into what you do. And I'm like, but I don't know about any of this. So how did what you were on another podcast? Right? But you weren't talking about diabetes? You just brought it up at the end? Is that what happened?
Marina Nitze 1:02:37
Yeah, it was a podcast called people I mostly admire from the Freakonomics team. And we were talking about sort of my career path around the federal government. And then Steve interviewed me a little bit about type one diabetes in my experience that with that,
Scott Benner 1:02:54
Isn't it weird how that and then someone who listens to this pocket a number of someone's listened to this podcast heard you on that? And I got immediate notes, please have this person on your podcast. And I was like, I'm on it. Like, like, geez, I felt very pressured. I'm not gonna lie to you. When the third email came, I was like, I'll do it. Okay.
Unknown Speaker 1:03:12
And you were very kind of those people. Well, you
Scott Benner 1:03:14
were very nice to answer back so quickly, because I have to admit, like, once I found you, I was like, she's not gonna answer me
Marina Nitze 1:03:22
have the most streaming diabetes podcast? Why would I not write back? I don't know, I
Scott Benner 1:03:26
feel I, you know, I don't know. I didn't grow up
Marina Nitze 1:03:30
like an imposter syndrome. I
Scott Benner 1:03:31
didn't grow up with a ton of self confidence is, my guess, is the real answer. But no, I was so thrilled like, and you don't ever want to like, it's a weird note to send. You don't say hey, by the way, I'm here am I you know, like, but you have to sometimes there are people I've gotten on this show, by sending them the downloads to the show. And it's the only way you can get them because they're more sought after. And they you know, you didn't do that. But, but they're sought after and they don't waste their time. They don't they don't do things that nobody hears, you know, which makes complete sense. This was really good. Did I not bring up anything that I should have?
Marina Nitze 1:04:10
I it's your show. I feel
Scott Benner 1:04:13
you're not holding anything inside right now. You're like, I can't believe you didn't lead me to this point. Yep. Thank you so much for doing this. I don't remember where I heard the pot roast story or whatever it's called, initially, but I did write about it in my 2013 book, titled Life is short laundry is a turtle Confessions of a stay at home dad. And I'd like to read that passage to you here. When I first became a stay at home Dad, I thought about certain tasks that I was performing in very gender specific ways. Eventually, my new life helped me to understand that there is no such thing as a woman's or man's task. When it comes to raising family, only parental responsibility. This topic reminds me very much of an old anecdote about pot roast that I've heard told over the years. I can't remember where I first heard it. But it makes the point that you should question what you know. The story goes that while preparing dinner one evening, a mother cuts the ends off of a pot roast she's about to put in the oven. Her daughter sees the cuts made and asks the mother why she removes the ends of the roasts. The mother thinks for a moment but doesn't know why she always makes those cuts. She tells her daughter that if she wants to find out she should call her grandmother and ask her since she is the one who taught her mother the method. The girl calls the grandmother, but she doesn't know either responding only that she did so because their mother did. still not satisfied the girl contacts her great grandmother by phone to get the answer for which she is so desperately searching. The woman answers the phone she is old and wary and has to think for a few minutes before she can recall the answer to the girl's question. Suddenly, the great grandmother remembers why she cut the ends from all of those pot roasts so many years ago, and says, Oh, that's right. I cut them off because my pain was so short that they didn't fit. So whether you're a bureaucrat making up rules as to who can serve as a foster parent, or a doctor telling people how to Bolus for their food, or anything in between. You really should stop once in a while and ask yourself, why do I say the things that I say? Is there really a reason? Or am I just repeating something that I heard someone else say?
A huge thank you to one of today's sponsors, g Vogue glucagon, find out more about chivo hypo pan at G Vogue glucagon.com forward slash juice box, you spell that GVOKEGL Uc ag o n.com forward slash juice box. Thanks also to the Contour Next One blood glucose meter. Learn more at Contour Next one.com forward slash juice box you may be eligible for a free meter, you are going to want to look into the test trip savings program. You want to find out about the most accurate blood glucose meter I've ever seen. It's not just accurate, it's super easy to hold. Super easy to use. It fits well into your life. If you're enjoying the podcast, please subscribe or follow in the podcast player that you're listening in right now. If you're listening online, please consider listening in a podcast player they are free and very handy. But last if you're enjoying the show, share it with someone who you think will enjoy it as well. Thank you so much. I'll talk to you soon. Find Marina at Marina and Itsu calm ma rinnitze.com and her app task tackler is available at task tackler.com
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#476 Common Sense v. Fear
Deva was diagnosed as an adult but she's seen type 1 before.
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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 476 of the Juicebox Podcast, I have a treat for you today.
Today's episode is with Deva. And I'm just gonna say it, she's my best friend. But this episode comes with more than just a pithy little opening, it comes with a money back guarantee. If you don't love Deva, and this conversation, everything you paid today to listen to the podcast, will be refunded back to you 100% in the form of an expired gift card. But if you love this episode, do something for me. I'll ask him one second after the music. First, let me tell you a couple of things. Here's the big one. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. Alright, the person you're about to hear was diagnosed as an adult, but they have an incredible attachment to type one diabetes and their childhood. It's an amazing story. And somehow around the one hour mark, we just really get into it. I hope you like this.
So when this is all over, if you enjoyed it as much, as I said, Please take five minutes to go to T one d exchange.org. Ford slash juice box, click on the link that says join our registry now. And then fill out the simple survey. That's it. You have to be a type one, or the caregiver of a type one. And you need to be from the United States. If you are those things, were one of those things, I guess you could be both. You could have type one be from the United States and be the parent of a kid with type one. I don't get bonus points for that if you are but still, I guess you could be we're getting away from the point. The point is if you are one of those people going clicking on join our registry now filling out that simple survey will do huge things for people living with type one diabetes, and it helps the podcast so it's a real bonus. This is going to be 100% anonymous, so none of your answers will be attached to you. It is HIPAA compliant. It does not require you to ever go anywhere, right you just do it from your couch sofa. Some people call it a sofa. Some people call it a couch. I'll let you wonder what I call it. But right now in your mind, you know what you call it? Right? Again, we've gotten away from the whole thing here. Anyway, from wherever you're sitting right now iPad from your phone from the computer, T one d exchange.org. forward slash Juicebox. Podcast participants like you have helped to bring increased coverage for test trips, Medicare coverage for CGM, and changes to the ADA guidelines for pediatric Awan seagulls. This is a big thing that you can do in a tiny amount of time. T one d exchange.org. forward slash juicebox link in the show notes, links at Juicebox podcast.com. We'll start with you just introducing yourself, you know, pretty basically, and I'll ask some questions, and we'll talk and that'll sort of be it. It'll come out the light for you.
Unknown Speaker 3:35
Okay, I love it. use
Deva Katz 3:36
that word I want I want you to describe me as delightful. You say that so nicely when you introduce other people.
Scott Benner 3:42
If you if you force it, I don't know what I can do. But I'll see what happens and what happens now. Now this part is gonna end up in the podcast. What happens if you're not delightful? And the whole time I'm like, I gotta wait for this lady to say something reasonable. So I can
Deva Katz 3:53
then maybe then maybe you will post it. I don't know. There's always there's always that option. Not delightful. We have a deal. You don't have to post that. How's that?
Scott Benner 4:00
I've never not put up one episode that I recorded except for to where the people who I recorded with later, I think realized that they maybe had been much too honest. Oh, not a health issue. But other than that, it's never one one person had what I consider to be an actual breakdown while we were recording. And I suggested that we don't let anybody hear.
Deva Katz 4:25
Wow, wow. I imagine you get that a lot people get very emotional.
Scott Benner 4:31
You know, I think I think people do get emotional and and that's interesting, isn't it that you would unburden yourself to a stranger. But I'm assuming have all kinds of people around you that you know and never and never say anything to. I wonder if the podcast doesn't make people feel closer to me, because they hear me so much.
Deva Katz 4:54
Oh, that is for sure. True. I feel like you're my best friend because I don't talk to anybody about my diabetes. Everyone who knows me I was diagnosed two years ago at age 47. I'm now 49. Everybody who knows me knows me already. I don't have new friends. Now. My social group is my social group. And it's not like this is been a topic that we grew up with together. So it just never comes up. So I feel like you're my best friend, your podcast, and not exaggerating safe my life? Oh,
Scott Benner 5:21
well, we'll get to all that. And by the way, our friends were really good friends, one or two of them would get diabetes, so they could be.
Unknown Speaker 5:29
Yeah, good point.
Unknown Speaker 5:30
I don't know how we would do that. But you know,
Deva Katz 5:33
although I imagine given my age group, I imagine if anybody else got diabetes, it would more than likely
Scott Benner 5:38
be type two. You might think, right? It's crazy that Well, alright. We're getting ahead of ourselves. Introduce yourself.
Deva Katz 5:44
Okay, my name is Deva Katz. And I am a type one diabetic diagnosed two years ago, misdiagnosed, I should say, as type two at first, and three months later, properly diagnosed as type one. And I mean, what else do you want to know? I, my particularly emotional side, all of this is that when I was 14, my 12 year old sister died suddenly from type one diabetes. And that just hit like, all that just came crashing down like a ton of bricks when I got diagnosed, even though logically I know, nowadays, it's very different. I mean, we're talking back in the 80s. You know, nowadays, it's very different. I don't put on dying in my sleep. I plan on living to ripe old age of 100, you know, but it's still in the back of your head, like, Oh, my God, this is really serious. And I'm not sure how much the world really understands that. I mean, your group, your listeners know that. But let's say in my social group, I don't think people understand that this is really serious.
Scott Benner 6:46
Okay, so you've said a lot, we're gonna get and figure things out. So don't say your first name. Again. I want to make sure I pronounce correctly. Deva Deva. Okay. Eva, given where do you Where do you live? I live in Israel. born there.
Deva Katz 7:01
I was not born here. I moved here in I want to say 2000. So I've been here 20 years.
Scott Benner 7:08
Wow. Move for Can you say from where where you moved from?
Unknown Speaker 7:10
I moved from
Scott Benner 7:12
lower Manhattan. I wasn't sure if you were running from like organized crime and you didn't want to say or anything like that.
Deva Katz 7:18
I would make a fun story. No, no, no, no, I moved here. Just you know, I'm Jewish. And I just wanted to be with you know, in this room, so I'm here. Even the best health care system ever. I paid 35 bucks a month for all my diabetes needs. Wow. Yeah. No. Right to reason to move here, you
Scott Benner 7:36
know, oh, and Lieberman's lives there he has type on the CNN CORRESPONDENT for Israel.
Deva Katz 7:42
I should know him. But I don't see
Scott Benner 7:44
why he's been on the show. Maybe you could find a friend and his
Unknown Speaker 7:50
friends.
Scott Benner 7:50
Imagine. Imagine if you're crazy. And oh, and sends me a note. He's like, hey, thanks a lot for saying Dave over. There you go. Hey, she seems okay. Oh, and don't worry about it. And we're best friends. So it'll be fine.
Unknown Speaker 8:04
Exactly. I told you my best friend.
Scott Benner 8:07
Alright, let's let's go a little slow here for a second. So you brought it up. So let's figure this out. You're saying about 35 years ago, your sister passed? And so was she undiagnosed as type one? No,
Deva Katz 8:20
she was properly diagnosed. She was five I was seven. We were driving down from Manhattan to my grandparents in DC for Thanksgiving weekend. And she we stopped the car so she can pee on the side of the road. I want to say every 20 minutes. It's a long drive from Manhattan to Washington DC. And I remember it like yesterday and we got to DC and it was obvious something was wrong. And she was diagnosed here she went straight from DC they flew to Joslin she was properly diagnosed and she was taken care of to the best of you know, my parents abilities back in, you know, back in their late 70s. You know, whatever was available then she did. Of course it was urine sticks, but she was definitely being taken care of.
Scott Benner 9:06
Yeah, people weren't ignoring it. I wasn't sure if because she said she passed in her sleep. I wasn't sure if she maybe just went to DK before she was diagnosed or if she was living with it.
Deva Katz 9:15
I obviously don't know. I was young myself. So I don't know the exact details of what happened. It could have been a insulin shock. Who knows? Who knows? She was definitely managed. She was being managed to the best of my parents abilities at that time.
Scott Benner 9:32
Gotcha. So you don't know if it was a situation where it was too much insulin or not enough? I don't know. You were young. Yeah.
Deva Katz 9:41
I was young and my parents at the time we the doctors would have been okay, you know, doing more research and autopsy whatever my parents is that like, what's the difference at this point? She was gone at that point and it didn't matter and and they decided not to pursue it further. So I'm not even sure they didn't know and if they did, they just really didn't share it with me. So I have no idea. Yeah.
Scott Benner 10:00
People might not understand the 70s was a significantly different time I try to explain to my children some time as they're voicing their opinions. And I'm listening and we're having a conversation like once in a while I want to say to them, you realize my dad, mom would have never listened to anything that I thought right like I would, I would have started making a noise and they would have been like a and then just walk away from me. Right? Yeah, it's and you had a you have a lot of siblings. Is that right?
Deva Katz 10:25
Yes. I'm one of seven.
Unknown Speaker 10:27
Wow. Yeah. Your parents were probably tired.
Unknown Speaker 10:32
My parents were tired. Indeed. Indeed. No kidding.
Scott Benner 10:35
Your poor mom's uterus. You are feeding?
Deva Katz 10:41
God God bless.
Unknown Speaker 10:44
Do you have any kids? Up to two? Okay. Yeah.
Deva Katz 10:47
My son is 15. And my daughter's 10.
Scott Benner 10:50
Gotcha. Oh, wow. So they've grown up? exclusively. You had both your children in Israel. They're Israeli? Oh, that's really cool. Yeah. All right. So you, nobody else your family's ever had diabetes with the exception of you and your sister?
Deva Katz 11:06
In my immediate family? No, I have some cousins with diabetes. Some are better taking care of themselves and others. But it isn't the family. The fact that I have it wasn't a huge surprise because it is in the family. My grandfather certainly died from diabetes. It wasn't a surprise. What was so surprised for me is my age. You know, I was diagnosed at 47. Right? That I think is I mean, do you hear about that? among your popular among your listeners is that? I feel like that's pretty rare.
Scott Benner 11:35
Well, the people are diagnosed, I think at this point, I've spoken to someone diagnosed at every age between, you know, zero, and I think 66 at this point. Wow. You know, so it does happen. I don't know that. I mean, I'm sure it's more or less likely, in some, you know, swaths of of age, but I also think it's so much to do with, you know, genetics and everything. I'm gonna ask a question, if I mispronounce a word, you'll forgive me. Are you orthodox or Hasidic by any chance? I was the family
Deva Katz 12:07
being if being pinned into a corner, I would say orthodox? Oh, of course, I have no way of knowing how you are defining the word.
Scott Benner 12:13
My question is really just it's not about religion. It's it's about smaller communities where people may be married a little closer to their Oh,
Deva Katz 12:23
so you're talking about the community? And you know, the answer to that is no,
Scott Benner 12:27
gotcha, because I have a very close friend, who's a nikkie, nurse at a major major hospital. And she says that most of like, seriously, most of the real malformations that they see with newborns come from that population.
Deva Katz 12:45
Yeah, yeah, that's what would what would be called inbreeding is Yeah.
Scott Benner 12:49
I was just, I was just wondering if it was possible that I don't know why I just, I'm picking through things. So
Deva Katz 12:55
I don't think that's a factor.
Scott Benner 12:57
Gotcha. Okay. All right. So you in your note to me, you know, it was very passionate, I very much appreciate it. And you really seem to, to want to talk about the passing of your sister a little bit. And if I'm not wrong about that, I'd appreciate hearing the story, I guess. Am I wrong? Or am I wrong? You're just hard. I
Deva Katz 13:23
know, you're not wrong. That is, that is when I initially reached out to you. Because just because it was I guess I was having an emotional day, which, you know, which happens. But overall, it's not just her passing, because I've been getting with that for 40 years. But the this in general, the emotional side of diabetes, like the technical side, the medical side, what your teaching spot on, I feel like I got it, you know, my my agencies, and I want to say high fives, it's good. And it's been that way since, you know, three months after diagnosis, like it's all good. But still, I feel like I don't know if this is because I'm still dealing with the shock of it. But the motional side of it, and I don't know if that's typical for everyone who gets newly diagnosed, or I'm adding the layer of my sister dying to the south. I'm so emotional about like, someone starts talking to me, I will probably start crying. And there's no reason to, um, well, I'm healthy. I'm well taken care of. We've got excellent medical care here. Like I said, My agency is awesome. Like, there's no reason why I'm taking this so hard. And that's, I don't know what it is. It's a curse. It's just like a major change to my life, or is it the fact that I'm just like reliving my sister dying? I don't know. I don't have an answer. So it could be. You're asking me Oh, is that what I'm talking about? I have no idea. I don't know. Well, I have some general questions for you. But we don't get to that now. We have a few minutes. So anyway,
Scott Benner 14:48
I'm excited. You have questions?
Unknown Speaker 14:49
Well, obviously list.
Scott Benner 14:52
Thank you. I appreciate you being prepared. I hope you don't mind that I'm not prepared. No, but I like talking about Like this better I like kind of picking through things. Because I mean, obviously it would at best be pop psychology to say that, you know, your sister died under what probably felt like reasonably mysterious circumstances, although you could point to the diabetes and add such a formidable age for you. And you listen, you told a story in the email that she and you were in the same bedroom and had my god I said that you had? Do you want to tell me about that? Because it's private, but I mean,
Deva Katz 15:36
how many listeners Do you have these days, but we up to 3 million
Scott Benner 15:38
people are gonna hear about it. So go ahead
Deva Katz 15:42
and be open book. So we were she, she, um, she shared a bedroom, that is true. And we got into this fight. I don't remember what it was about. Although if I had to guess I'm sure it was because I was just picking a fight for no reason, because that's very much my personality. And we were fighting. And I basically told her that she can't sleep in the room, she has to go sleep in the classroom. And because she was so sweet, and just younger and just wanted to keep the peace. She left she left the room. And then she went to sleep in the guest room. And I went to wake her up for school the next day, because he did have to make the bus and, and she was obviously gone. Now I didn't know that at 14 that she was gone. I I had no way of really telling him I went to my to my mom and I said, Listen, she's not waking up. But I got to go get ready. So you deal with her. And and then the next thing I know the paramedics are in the house and you know, and that was it. So the fight was very unfortunate. My mom in a few minutes of complete lucidity, lucidity. Is that a real word? That's a word, right? It is no, it is now sadness, whatever. She was lucid for those few moments. She turned to me for the funeral. And she said there was nothing you could have done. You wouldn't have heard you wouldn't have known. This had nothing to do with her sleeping alone. And whether it's true or not, who knows? My mom said that to make me feel better. It worked, you know, and made me just take a deep breath and realize maybe she's right. Maybe she's not I don't know. But I had the opportunity to feel like maybe mom was right. Maybe there was nothing I could have done. Who knows? I'm not a doctor. I don't know. But it put it to put it to rest for at least that initial. That initial time, which was so difficult. But looking back years later, I'm not so sure. You know, people don't have seizures. I don't know what happened to her. They're not so quiet. I'm not sure what happened. Who knows? Yeah. 50 5050
Scott Benner 17:42
your head that if she had a seizure, you might have heard it and woke her up. And it definitely would have gone to your parents, maybe
Deva Katz 17:48
I maybe I definitely would have heard it. There's no way I would have slept with seizure because she said she had had some of them. She should have them. I would have known I would have known for sure.
Scott Benner 17:59
Well, I mean, listen, I this is not apples to apples, I don't think but I was incredibly close with my grandmother as I grew up. And I had a job after school. And I got home from school one day, and I was in my bedroom, changing my clothes from school to what I was going to wear to work. And I was late and not late like I was, you know, not paying attention. It was late. But it was that hard to get from school to home and then to this job on time. And the phone rang, and I picked up the phone and it was my grandmother who wanted to chat. And I would have talked to my grandmother, always, you know, and so I started to talk to her. And I just said, Grandma, I'm sorry, I have to get the work. But I don't work tomorrow. I could call you tomorrow after school. And she's like, that's great. Call me tomorrow after school. And then the next morning while she was getting ready for work, she had a stroke and she died. Wow. And I just never, you know it. It's something that bothers me to this day. And I don't know if I, you know, I understand academically that you don't control when people come and go out of the world. And there's no way to know like, you know, there's no, there's a light on your forehead that says tomorrow is your last day. So you know, but I still just think that's stupid job. Or I was making $3 an hour working at a pet shop so I could buy gas for my car so I can afford to drive to work. You know what I mean? Like it just, I could have been 15 minutes late to it. But then I stopped and think about how much amazing time we had together. And we were very close. And I mean 15 more minutes wouldn't have changed that. I don't think you know,
Deva Katz 19:39
yeah, we're all a lot smarter. In hindsight. Yeah. You know, in hindsight, we're all less smarter you you know, my kids fight now and and I bite my tongue from saying you guys shouldn't be fighting because you don't know what's going to happen. I never never said that to them. But in the back of my mind, I feel like oh my god, I wish I can give them that wisdom, you know that they should know that their behaviors. Now you If it could affect you later on, failing and being mean, and I don't say anything, because they have to figure out their own path and then let them do their thing, but but I wonder, I wonder, like, How much could have been prevented for me if my, you know, if my mom had stepped in, like, Okay, you guys have to figure this out make this makeup or figured this out, you know, we're not sleeping in the guest room. Like, I wonder my mom was hands off with all of our fights. And I understand why. But I wonder, you know, how life would have turned out differently, you know, had she not had not passed so young. But anyways,
Scott Benner 20:33
I hope you can find a way not to wonder so much because yeah, you know, stop wondering. Because you're never gonna figure it out. And it's just never gonna
Deva Katz 20:40
figure it out in the world is too busy anyways, my goodness, we're living in crazy times.
Scott Benner 20:44
Your hearts gonna be beat up worse than your mom's uterus was? Yeah. So
Unknown Speaker 20:49
good point. Good point.
Scott Benner 20:50
Well, I am sorry, that happened to you. But I do think it's important to understand cuz I'm imagining it's, it's, you know, at least imprinted on you enough that the rest of the conversation, it'll be valuable for people to know that as we move forward. So you, so you grow up and make babies and move away and do all these things. What do you do for a living?
Deva Katz 21:14
I am a logistics manager for a food import firm.
Scott Benner 21:18
Is that like a lot of making sure the trains run on time?
Deva Katz 21:23
trains is boats, like we import food from all over the world? And we supply to the major food manufacturers here and as well. So it's it's a it's boats basically.
Scott Benner 21:36
Got to be incredibly important. I mean, do you have any natural resources in Israel to to create food with
Deva Katz 21:44
to create food with? We do, we do have? We also purchase a lot we export quite a bit. I mean, my company doesn't do any export, but the country, the country does export goes, sure we export quite a bit of fruits and vegetables. That's pretty big for export, but we import whatever we need, you know, fair trade,
Scott Benner 22:01
you know, it's amazing. So not that this has nothing to do with the topic. But the way Israel has figured out how to move water around the country is Yeah, yeah. It's crazy. It's absolutely otherworldly. It's amazing. So I mean, that you can grow fruit there is kind of insane, right? Yeah. Wow. That's something okay. So that's it's an important interesting job. It did you it's important. It's
Deva Katz 22:27
also considered essential because it's food. So I've been working straight through this whole COVID thing.
Unknown Speaker 22:31
You didn't get a COVID break?
Deva Katz 22:33
Nope, not get a COVID break because people have to eat even if they're stuck at home.
Scott Benner 22:36
Yeah, no kidding. My wife has been working non stop in my dining room for seven months now.
Unknown Speaker 22:42
Seven months. Yeah, that's what we're up to her company
Scott Benner 22:44
has one of the one of the vaccinations that that they're working on. And she's Oh, wow, very diligently working on making sure that it will be safe and reported correctly and stuff like that.
Deva Katz 22:57
Let me on behalf of the entire planet. Looking forward to the vaccine. Yeah.
Unknown Speaker 23:00
I look over there. And oh, my God, I hope they're getting close to this. But anyway, okay, so you.
Scott Benner 23:10
You're diagnosed with type one at 45 years old?
Unknown Speaker 23:13
- I appreciate you making me younger
Scott Benner 23:16
than I am. Listen, you can be however old you want, if you want, but 47 I'm sorry. What were the first signs
Deva Katz 23:24
for signs, you know how everyone says how they don't notice the signs in their, in their kids, when they like as a parent, notice the signs. Everyone on your podcast said that they missed all the signs, you think you'd think that I would have noticed the signs in myself. But my, my son, who's now 15, at the time was just turning 13. So we were planning his Bar Mitzvah was a big glorious affair. And I was just really, really involved. And I work full time at a very intense job. So everything was just really busy and stressful and hectic. And I felt quite rundown. And they blamed it on my poor kids Bar Mitzvah and the athletes Bar Mitzvah. And I just like I'm not covering how people make affairs all the time. People throw parties all the time and why but just not feeling recovered. I just felt like I was rundown. I kept blaming this poor kid. And and I just didn't, I felt like I was just run down from working too hard. Yeah. And then the night that I got up four times to use the bathroom. I said, that is not okay. I'm finished nursing. There's no reason why I'm up four times in one night, I'm done with that I'm done with infants. And that day, went to the doctor and I said, You know, I think I diabetes. He said, Well, what do you think that and I said, because I got up last night four times to be and he said, well, let's have a look. And it was four seconds later and it's like No, you do have diabetes. How much
Scott Benner 24:43
of the of the road trip to Washington from when you were a kid? Did you remember that? We're now
Unknown Speaker 24:49
remember that? Oh, yeah. That was very vivid.
Deva Katz 24:53
When I woke up that morning, after going to the bathroom four times that night, I knew well, it would have been better had I noticed You know, four weeks prior, because I wouldn't have felt so lousy but Tom, I actually got to the doctor, and I lost 30 pounds, which, for the dress I was wearing in the apartments folk was awesome. I looked amazing, which was lovely. But I should have realized that this is not okay. It's not okay. So last time I went to the doctor, I was really feeling very lousy
Scott Benner 25:22
30 pounds. Is that a significant amount off of anyone's frame?
Deva Katz 25:25
Yeah, well, I'm four foot 10.
Scott Benner 25:28
Well, but it still it just doesn't matter. It's, it's a big chunk of weight in a short amount of time. And if you didn't make some significant change to your couch, your caloric intake. I don't think that you would see that I got so
Deva Katz 25:40
I was exercising like crazy because I wanted to fit his cats. Okay, so I was exercising quite a bit. So I thought, okay, great with a good job. And I was watching what I ate, because like I said, I was planning for this party. So I, I assumed I was doing a really good job. And obviously, looking back now that's ridiculous. No one, no one looks back at it doesn't make any sense. It's just,
Scott Benner 26:03
you know what you can tell you're from another generation. Because if you were younger, you'd immediately put yourself on Instagram and call yourself a workout influencer?
Deva Katz 26:11
No, no, no, I knew something was wrong. But I didn't connect the dots because I was so I was busy and work was very busy. Work is always busy. And, and. And I went to the doctor, and when he said, Oh, yeah, you have diabetes, and like, Okay, I'm not at all surprised what happens now he says, well, that you have to go to the emergency room just to make sure you're not in decay, which I wasn't. But he just needed to rule that out. And apparently he couldn't do that in his office that has to be done hospital. I don't understand that. But apparently that's the case. And the hospital was within two days stay in the hospital. And they were convinced it was type two. And they said Why are you convinced of that? Like I'm presenting as type one. I'm not stupid. Like, I know what the signs
Unknown Speaker 26:52
are? My family? Yeah.
Deva Katz 26:55
Yeah. I like arguing with the doctor and like, why, why you're saying that I need it. Like, I know what I need. I need insulin. No, no. Metformin will be good for now. You'll see your family doctor, he'll follow up.
Scott Benner 27:08
Do you think just based on your, your body construction and your age? They just assumed it was type two?
Deva Katz 27:14
Yeah, yeah, for sure. For sure. For sure it was the age, because the presentation was completely type one. So because the medical system here is all connected. My GP who sent me to the hospital, saw my discharge papers The next day, like they get electronically transferred. So I saw them right away. And he called me he said, You need to see an endocrinologist immediately. I've sent your file over, he's gonna call you for an appointment. And it was it was clear and acknowledges right away said no, no, we have to test you for antibodies. This is this is probably not type two. And right away, it was properly diagnosed
Scott Benner 27:51
that quickly so the hospital got it wrong. And
Deva Katz 27:57
because it was a weekend, and if you know a little bit about Israel, it was a weekend during the high holiday season. So it's like Christmas in New York. No one's working between Christmas and New Year's. It's the same thing here during high holiday season. And it was a regular doctor on call wasn't an endo in the hospital who saw me and what took so long here. And this is I don't want I don't want to say it's a flaw on the system. But although the endocrinologist over the phone had ordered the antibody test because he he guessed that that what was going on. I didn't actually see him for another two months. It took a long time because our government collapse that we have immediate elections, they also seem and then he got sick and I'm sick a whole story. So took two months and every and I'm just feeling worse and worse and worse. And two months later that it was off. So you're saying quickly, I wish it was quicker, but I guess I can't complain. Cuz I know people have it much worse,
Scott Benner 28:53
though, like so it went from Hey, you have type two to immediately No, no, that's type one to two months to get insulin.
Unknown Speaker 28:59
Yes.
Unknown Speaker 29:00
Were you in da by then?
Deva Katz 29:02
I was not. I guess I must have been honeymooning. Huh. Well, that's been I don't know. I don't know, because I was definitely not in TK Definitely not.
Scott Benner 29:11
So this $35 healthcare, cheap, but not quick.
Deva Katz 29:16
So it's it's Yeah, exactly. I should say that it? Yes. Yeah, it's not quick. It could be quicker. I think because the discharge papers said type to the medical system, the way it's written into the system. Didn't take it as urgent. had anybody written down on any paper. This is a definite type one, it would have been treated with urgency. It would have been dealt with much, much quicker but because the system is all connected. Anybody who looked at my file scope like to Okay, whatever shall wait another week, and then that just kept happening and the equipment just kept being pushed off until I finally got to see him. I'm always so I got to see him after two months, not even not three months. When they wanted me to come in, because at that point I had gotten the antibody blood tests back and it was well over 500. And I and I knew what that meant, because I had been, you know, online reading and I've been listening to you and I knew what that meant. So I call the nurses office and I said, I need to see this doctor immediately because I need insulin now should know you on Metformin, it takes a while you'll still feel better. It's okay. And I still listen, sweetheart, open up my phone, because I know you have access to it. Tell me what you're seeing. And then she's like, Oh, you're right. You come in today, one o'clock.
Unknown Speaker 30:32
No kidding. I was there. There's a you found a podcast before you found insulin.
Deva Katz 30:36
I found a podcast before I found insulin. How'd
Unknown Speaker 30:39
that happen?
Deva Katz 30:40
How did that happen? Because, um, had that happen? I guess I wanted to learn as much as possible so that when I would get to this appointment, I would be prepared with all my questions. Because otherwise you go in and you feel like you're being talked at. And the doctor was just telling you what to do. And I didn't want a situation where now you have to wait another two months before get to see him again. With any follow up questions. I just wanted to have everything straight in my head, so that I could ask the right questions. And thank God, you know, I went in there, I probably had four or five pages of notes of questions. And we just bang them all out. Because I want you to really understand because that is why six weeks later, I had an emergency that went down from 9.5. That diagnosis to 5.7.
Scott Benner 31:28
That's really good. Because I knew what I was doing it because you you had practice ahead of time, like you really made sure you understood long before you got there. That's it. That's it That's really industrious, love you seriously, because I think it's where you I don't know what to say here. Like, I don't know how to guess. Were you more or less afraid of it because of your sisters.
Deva Katz 31:50
I was I was more afraid of it. I was sure I was more afraid. I was 100% more afraid. And I said it is it's an I have small children. And it is my responsibility to see them to adulthood. I cannot afford not to be around for them. And and I was for sure from fear that I needed to make sure that I was very well, I'll tell you what else helped me because the hospital was convinced I was type two, I went to see a dietitian for type two, within two days of being in the hospital. So she gave me a whole regimen of of how to treat type two in terms of low carb and low glycemic and all that stuff. So right away, I was eating in a much in a much better way. No insulin, but I was eating so much better. Right away. So I just jumped right in. Yeah.
Scott Benner 32:42
Is that something you kept up the kind of dieting style? Yeah,
Deva Katz 32:45
yeah. Yeah. Because it was I was doing it for two months before I got the insulin. Okay, two months, I can do it. And you know what it's working. And every so often if I if I'm like, I have to have a piece of cheesecake, I do it but it's really not the norm because it's not worth it. It's not worth the headache, the hassle, and it's just not worth it. For me. I prefer eating low carb and low glycemic although I do eat but I it's just easier to calculate and among MDI also, and I don't know if that would be different. If I switched to a pump. I don't know, what do you hear from your listeners you
Scott Benner 33:17
feel like? So you're doing you're doing lower carb, you're saying more out of a management style that it's easier to control because there's not as much fluctuation and glycemic load from foods. But you're wondering if you had a pump and you could inject more frequently. If you try more cheesecake, I'm assuming cheesecake is the thing you miss the most.
Deva Katz 33:39
They can miss the most indeed. So yeah, so that actually was a question on the statement. So do you have an answer? Well,
Scott Benner 33:45
I think that it's interesting. I just yesterday, I've been doing this series of like how he conversations getting people on that have different dieting styles. And I just interviewed Mike yesterday. It'll be up before this, but hasn't been up yet. Who is eating in a completely keto lifestyle. And he described that he had had diabetes, you know, his whole life. And it was fairly poorly controlled. He was diagnosed a very long time ago. And you know, insulin wasn't the same and testing wasn't the same. And he got to a point where he said that his doctor told him he was diagnosed so long ago that he wasn't going to live past 30. That was his prognosis, getting diagnosed. And when he got the 30 he was out of shape and not doing well. And a new doctor said to him, like, you know, basically, man, you got to pull this together, you're not going to make it much longer. And so he got serious about it. dieted himself down, you know, took care of his blood sugar's more accurately, but it wasn't until he found the podcast that he really figured everything out. And then he got to the point where he really understood his insulin was doing great had a very much lower a one C, but then made a switch to keto. And, you know, which is you know, the way he described it. It's You know, there's, you know, he's I think he's got 29 carbs a day he eats and it all sounds like it comes from from vegetables. And his blood sugars now are just much more stable. And he says he doesn't miss those foods anymore. But But the minute that some of the that he tried to introduce something Maxi didn't even feel well. So I don't know, I think it's person to person like he doesn't seem to miss it. But if you did, then, you know, if you find yourself missing certain foods at some point, and you need to be more aggressive or or stagger insulin differently through meals. I mean, maybe I don't know you maybe if you had a pump on you'd take a shot at it? I'm not sure.
Deva Katz 35:42
I don't know, I can't handle even wearing earrings. So I can't imagine walking around with a pump. That's what's stopping me unless it was a great benefit towards for it. Like, what I have to be able to know what problem I'm solving that a pump would actually be better because I don't mind them the I the mind shots, you know, I can give six, seven shots a day and I'm okay with that. If I need it, you know, I actually don't mind the shots. I'm if the pump would help me keep better control than I would then I would absolutely try it. But I'd have to really be convinced to that. And that's why I'm looking to ask you to convince me but I am still trying to figure figure that out. Because I really, like I said I can't even stand wearing earrings. I really find anything attached to me unpleasant and I do wear I wear a Libra How do you pronounce it? So I do wear that which is what they call here a CGM. And and and I feel like I can't live without that. And I'm not willing to give that up. So I kind of suffer through that even though I find it very unpleasant. But I do it because I I feel like that's the best way to manage. Yeah, there's
Scott Benner 36:43
a trade off you feel like that you don't like wearing something but the benefit outweighs your desire, not the worst. I mean, I mean, listen, I think I think a pump is is, you know, isn't it gives you a couple of advantages that you can't have over MDI, right, it gives you the ability to manipulate your Basal insulin. So right now you're putting in your Basal insulin probably once a day, and it's just working the way it works. But with a pump, you don't take that insulin, that slow acting insulin anymore, you have your fast acting insulin that's working both as your meal insulin as your basil. And so you can tell it, you know, between this hour and this hour, I get, I don't know, point five units an hour of basil. But, you know, my blood sugar tries to get high every night between 3am and 5am. So maybe from 2am to 5am. I'm going to raise my basil from point five 2.8. I don't know like something like that, you'd have that control over that. You'd also be able to take in protein. I don't know if you're noticing that protein as its digested gets transferred into glucose.
Unknown Speaker 37:49
So much later,
Scott Benner 37:50
right. So you could you know the way Mike described it in a way others have in the past. He eats his whole go keto meal and doesn't Bolus till he's done, but sometimes has to create what they call an extended Bolus to stretch that insulin out over kind of the impact time of the of the protein rise. And that's one thing you can't do with MDI. MDI, you'd have to inject in a little bit and inject a little bit later and try to,
Deva Katz 38:18
you know, for the meals I inject could be multiple times for one meal based on what I'm eating, I get that for the Basal Is there any way to manipulate Basal with MDI? Not possible? Well,
Scott Benner 38:30
there is if you It depends on which based on which one you're using. So the much newer ones are so effective, like baz lagar, Bayes lagar. And there's a couple of them but if you're using like leaven, Mir Lantus, the older ones, do you know which one you're using,
Deva Katz 38:46
I'm using something called TJ Oh, I don't know if that's a brand name,
Scott Benner 38:49
or it's a newer one. And so if it's covering real well, for you over 24 hours, then there's not much to do those older bezels don't seem to last the whole 24 hours, even though they're supposed to serve some people split their dose every 12 hours to create a more kind of even blanket of Basal insulin. That was really the only thing about manipulating basil that I would consider and it would be with those older insulins not the one you're using. I don't think so. I don't know. I guess I don't I don't think I could talk you into wanting to pump. I don't I don't think you need to be talking to it.
Deva Katz 39:24
I I want to I'm still looking into it. I'm so I'm thinking about it, because I'm wondering if there will be unreal benefit, then I would do it. But I'd like to see my graph even better. How do you when you define, you know, in range,
Unknown Speaker 39:39
are you if it's
Deva Katz 39:41
going up and down, but it's within the range? You call that a spike?
Scott Benner 39:46
So what's your Okay,
Deva Katz 39:48
what's your um, set at um, set between 70 and 130? That's my high mid low 70 to 130.
Scott Benner 39:54
And your would you consider your bouncing meaning? Do you have to stop the rise with insulin and then stop the food with or non stop the fall with food? Or is it
Deva Katz 40:04
in within within that range within 70 to 130? Would you? Would you consider that at all a spike?
Unknown Speaker 40:13
I mean, how often how frequently I'm
Deva Katz 40:15
trying to avoid spectra, you want to be as straight as possible. So when you define a street is the street mean anything within my my range that I've set? Which street mean, a straight line with a ruler? Like my Basal overnight is a straight line like a ruler, obviously, during the day, is my goal even to get to that point? Is that possible?
Scott Benner 40:35
So here's how I think of it. And Jenny, if you've listened, any of the pro tip episodes in general, say the same thing you're looking for gentle rolling hills, not sharp ups and sharp downs. And a person whose pancreas does work could see a spike, you know, 130, after a particularly heavily heavy carb meal could even go to 140 if there's like a lot of sugar in there. But of course, their blood sugar is gonna go up and kind of gently roll back down again and get flat. So the variability, the up and the down is not great for you. But up and down between 70 and 130. I mean, I have to be honest, I think Arden's graph, mimics yours in that times away from food, she's incredibly stable at, you know, lower blood sugar's 85. Overnight, usually. And then when she gets the food, you know, depending on on the impact of that food, we could see a spike. I don't think of a spike. I think a spike in my mind is 160. So the numbers not maybe as important as the percentage it moves, you know, so if she's from 80 to 160, all the sudden her blood sugar has doubled. And that to me is a spike. You know what I mean? Like anything that you can use on after that is still a spike. It's just more drastic. If Arden is at when she eats and rolls up to 120 and comes back to 80. Again, I'm okay with that. And I think there are people who would tell you no, you can accomplish that absolutely flat, straight line. And I think they're right. I think if you don't eat carbs, you absolutely can. I think if you are managing blood sugars in a younger person whose body maybe doesn't have all the hormones and other things going on, I think you can I you know, but so is it, I think then that becomes a life balance for you. And you have to say, Do I want to not eat carbs ever again to have this if I'm okay with that, then that's the right thing. If I want cheesecake sometimes then maybe I'm low carb most of the time, but not, you know around this and I have to understand that that cheesecake is going to try to make my blood sugar go up, and I'm going to have to counterbalance it with more insulin. Like it's a personal preference, honestly.
Unknown Speaker 42:54
So here's your question,
Scott Benner 42:55
please. I think that's what we're gonna do, guys.
Deva Katz 42:57
That's what we're doing. No, no, you've answered a bunch of them so far. Straight out. One, how could you say you don't you hardly think about diabetes, you say oh, no, with my Dexcom and my Omnipod? Are? How do you think about it at all? what you're describing out? In my mind feels like to keep that line really straight? You have not you one would have to be thinking about diabetes all the time.
Scott Benner 43:19
Well, how long have you had type one now?
Unknown Speaker 43:23
Exactly. Two years, two years?
Scott Benner 43:24
Is it my today's not your day? Is it?
Deva Katz 43:26
No, no, September 13. So just two years at one month
Scott Benner 43:30
times people end up on on their anniversary date. And so that's why I like to use my anniversary when you set that up on purpose.
Unknown Speaker 43:39
solely. How how indeed.
Scott Benner 43:45
I think it's, I mean for speaking for myself. There certainly has been many points in my life when I would not have been able to say that and and saying that would have been a lie. Now it's not but it's it's just it's an amount of time that I've been doing it for so long that it just does what I what I want it to do because I'm not making a lot of mistakes. And I don't mean mistakes in a judgy way. I just mean you know, we get the insulin right for foods. The basil settings are where they belong. We see things coming like stress and anxiety and handle them prior like Arden took a PSAT the other day. And she's been you know, going to school from home for ever now it feels like it's but she had to go into the building yesterday for the PSAT. So now all of a sudden we experience feet on the floor like she got up in the morning. She had some adrenaline going tissues rushing around going to school. We Bolus right away a little bit of insulin coming out of bed for that that little bump, and a short time later when we were in the car. And heading to the school. I looked in her blood sugar was 115 ish, like in that area. And I looked and saw an up kind of motion in her blood sugar, and we put more insulin in. So I put in insulin with a 115 blood sugar going into a sap. And I guarantee you most people wouldn't do that. No, right? No. And but if they didn't, what would happen is her blood sugar would keep going up. And it would end up be 150 or so. And then it would sit there for a couple hours because I'd say What would I say, Oh, well, she's taking her sad. I don't want to bother, right? Like it would be that whole kind of freefall happens then? And none of it happened. Because I did the right thing at the right time. I know what the right thing at the right time is because I have a ton of experience. And no, I didn't think about it until the exact moment where we were driving down the street. And I thought, Oh, this is the part in the drive to school where we usually look at Arden's blood sugar. And so I said, Hey, you'll pull your phone out real quick, what's your blood sugar? And she told me, I was like, let's put some insulin in. And she did it. And that was it. I think that whole exchange took 20 seconds. And I didn't think about it after that, because I know it's going to work. And I have settings on her Dexcom in places where it will alarm before anything goes wrong. So that we can, if there are smaller adjustments still left to be made, they can be made before things get out of whack. So I never let them get to that point. And if they do, and they will, at some point, at some point, I will mess up or just something happens. When things get out of whack one way or the other. I'm incredibly good at fixing them quickly. But you will be too at some point.
Deva Katz 46:45
I hope so I feel like it's taking up a lot of my emotional headspace. And, again, I don't know how much of that is related to my sister. And how much of that is just because I'm new. And I'm learning. And maybe I'm learning a lot all at once. You know, I was on your podcast. Like I said before I even had insulin like right away. am I learning everything? And it's just taking up a lot of my headspace. And I hope that goes away. Because it's, it's too much.
Scott Benner 47:08
Yeah, no, and I think it does, I think it lessens as it as time passes, I think it's about having experiences, I genuinely believe that you have an experience, you react to it. The worst thing you can do is say to yourself, oh, like that's just diabetes, that's going to keep happening, I'm always going to have these experiences. Because if you look closely enough, you'll see what happened, you'll see that you have to Bolus a 115 going into a test because the test is going to be here there's going to be some anxiety with the test. Or how about the fact that she's rolling into this test, and it's just gonna be sedentary for a while. I know sedentary takes more insulin. You know, there's there's all kinds of like little things that you don't have to like, I'm not looking up into a mental whiteboard to finish that figure things out anymore. It's just the scenario tells my brain what to do. I don't know if that makes sense or not. It's like two plus two out in the in the background, a conversation that you weren't in, you'd think subconsciously for, you know, like so I think, go into school for a test early in the morning insulin. And I know how much to use, because I've done it before. And our bases are really great. And that is a part of it.
Deva Katz 48:30
Right? Well, I know my I feel like my Basal is correct, because like I said, I can measure it with a ruler, like it is a straight line overnight. And I wish I could go all day fasting, you know, I wonder if that's
Unknown Speaker 48:41
a possibility. You
Deva Katz 48:41
know, I wonder about that. But that's what your podcast has given me. It's given me the courage to know, you know what you're doing like that in the back of my mind. It's, it's like I say that I have all this anxiety, but I also have a certain calmness that comes from
Unknown Speaker 48:57
some knowledge,
Deva Katz 48:59
feeling like, I know, I know what I'm doing. I and you just sit down. And you reminded me You just said now two plus two equals four? Well, because everyone knows that. And when I was first diagnosed, you didn't
Unknown Speaker 49:09
know that.
Deva Katz 49:10
I was not I had, I was listening to five different podcasts. And two years later, yours is the only one I'm still listening to. And one of them I dropped when she said, Oh, it was diabetes, two plus two doesn't equal four. You know, two plus two, I think what was it you one of your guests said someone said it two plus two equals a banana. And I just felt like, Oh no, that doesn't make any sense at all. Like, that's just not true. Like sometimes things go wrong, but there's always a reason why it goes wrong.
Scott Benner 49:35
But you understand why people feel that way. And so to why and then with with limited knowledge and a vast misunderstanding of how insulin works, it would be very easy to think that it's completely random. And it's it has been I think until this podcast, very un-pc to suggest otherwise. I think I am the first person that I know in a modern diabetes space who said, Look, you, you can't just sit here and act like this is all random and you have no control over it whatsoever, because then it just gets worse and worse and worse. And I'm not saying that you can be completely in control of diabetes or insulin. That's obviously not what I'm saying. What I'm saying is there are a lot of things that are happening to people that they don't know why. But that doesn't mean that there isn't a reason why. And they often make incredibly reasonable decisions that are 100% wrong. And and my best example of this is always a person comes, you know, onto the web board, or they contact me privately or something. And they're like, look at this graph, my kids blood sugar, I'm always low. And then you look and I say, well, we're all these lows after meals. Yes. All of your stability time is high. Like, whenever you're stable. You're stable in the 140s, the two hundreds, and they're like, yeah, I said, well, you you seems like you need more basil and so on. No, no, no, you don't understand. I'm always low. And I'm like, No, that's not what I think is happening. Here's what I think is happening. I think you don't have enough Basal insulin, because you don't have enough Basal insulin. You're overcompensating at mealtimes with way too much meal insulin, you're putting it in Miss timing it using too much your blood sugar shooting way up. And then it comes crashing down. For some reason. The only part you see when you're trying to diagnose it is the crashing down part. Why don't you see the way up part. And so the lows, so make people frightened that they can't possibly believe it. And then I just did this this week with an 11 year old boy doubled his basil. Kids. Basil is point five, we made his basil one. Mom's like, No, no, that's not gonna work. I was like, Look, you don't have to do it. It's your kid. I was like, but what I'm telling you is want to try and see what happens. By the time we had it all figured out in 36 hours, by the way, remotely, I'm not with them, okay. 36 hours later, this kid's blood sugars are terrific. They are amazing. And all of the extra insulin she was using correcting around meals and causing lows. That's all in the basil now. And now she's not using that much insulin at meals, and everything is better. And it turned out, it's the same amount of insulin in a 24 hour period, it was just all in the wrong place.
Unknown Speaker 52:28
Wow. So
Deva Katz 52:30
I hope to get I want to get to a point where it's seamless, because what you're describing just sounds like an incredible amount of thought process which we do what we have to do, but it's it's taken up too much of my wife and and I don't want to be that person who's completely consumed by by that.
Scott Benner 52:46
But here's the good news. And I think I mean this. I already put the effort into it.
Unknown Speaker 52:54
sharing it, and I
Scott Benner 52:54
just explained it, I think as simply as it can be explained that
Unknown Speaker 52:58
that's true.
Scott Benner 53:00
And so if someone hears that, and says, Well, no, that's not right. I mean, there's nothing I can do about that. And I might not be right. And by the way, that might not be everyone's situation. There are some people whose, you know, Basil is way too strong. And they're constantly eating and causing spikes with the eating. But it's all about the same six problems just jumbled around in different places. And I can see it now because I've looked at it so frequently. And I think the podcast, I think the pro tip episodes of this podcast, are about the best information around about using type one dive about using insulin for Type One Diabetes that exists anywhere, I think it is the most digestible and easy to consume. And I I would think that anyone who listened through those protip series got a firm grasp of it could have anyone seen the sexes in literally no time?
Unknown Speaker 53:56
Yeah, for sure.
Scott Benner 53:57
Yeah. So that but the other thing here is to you seem like a bit of a perfectionist. Could that be true?
Deva Katz 54:05
I wanted my daytime to be like my my daytime graph look like my nighttime drive, and it doesn't Far from it far from it. And I don't know if that's even attainable. Maybe have to just focus like what you said down which is new information for me on the percentage of the jump and not drop itself. Maybe that's worth focusing on.
Unknown Speaker 54:23
Well,
Unknown Speaker 54:24
I'm what's interesting,
Scott Benner 54:25
I want to say like, it doesn't look like overnight, but you're not going above 130 Is that correct?
Unknown Speaker 54:33
Ah,
Deva Katz 54:34
I'm about 7078 or 80% in range. So I am a little bit over 130 but not not a lot but I am sometimes I'd like it to be less I'd love to be 90% in range I want to be 100% range. You
Scott Benner 54:48
know what I think you will I think that you absolutely well, but it's it's gonna if I'm guessing I can't see your your your numbers right? but my guess is Is that if you concentrate now? Well, let me ask this question first overnight, you said you're nice and steady, nice and steady were
Unknown Speaker 55:08
What? 1995?
Scott Benner 55:10
Okay, so nice and steady. 95. Beautiful. Let's assume that that basil is really pretty close. Okay, I could make an argument for 85. But whatever. Now, we're next morning, we show up your your 9095 95. You eat, you go to 131 4150. You come back down again. You're 95 again after the meal is over two, three hours later. Yes. Pretty much. Yes. Hello, yes, you probably just need a tiny bit more insulin for your meal. Maybe it needs to be timed slightly better. But you're very close to begin with. Can you picture that rolling Hill in your mind?
Deva Katz 55:48
I'm trying to
Scott Benner 55:49
Yeah. And you just if if, if you eat and your blood sugar shoots straight up, comes back down and goes right back to 95. Again, later, you did not Pre-Bolus the impact of the of the carbs well enough, right? You didn't give the insulin time to get working before it had to fight with the carbs. If you put your insulin in and eat, and your blood sugar goes up very gradually, very gradually and it kind of stays up there and never comes back. And you have to put in a little more insulin to bring it down your Pre-Bolus was probably pretty good. He didn't use quite enough insulin.
Unknown Speaker 56:25
Right? Wow. Yeah, I hear you.
Scott Benner 56:28
I hear if it shoots up and stays up. Not enough insulin, not enough. Pre-Bolus. It's just there's and these aren't hard and fast concrete rules. They're just great places to begin diagnosing what's happening.
Deva Katz 56:42
Wow, okay, I wrote that down.
Unknown Speaker 56:45
Oh, yeah,
Scott Benner 56:46
you take notes, you blow my ego way up. Don't do that. Or just don't tell me at the very least,
Deva Katz 56:49
oh, I shouldn't know why you're busy saving lives here. And I'm serious. And, and I have an excellent dietitian. And I have an excellent and I'm really happy. But somehow this doesn't come up in those conversations, you know, the look of my graphic like, Oh, you know, 78% of means you're doing awesome, you know, good for you gold sticker, which is nice. But why can it be better? Yeah, well, I wonder if their standards are too low. Like,
Scott Benner 57:12
well, don't you? I mean, for you, because you have, you have more desire, right to do better. But you have to always have to think that those people are, they're dealing with masses of people at a time. And they don't have they don't have a way to know who they're speaking to. Right. So it's it's a, it's a much different situation. They can't just give, you know, they can't give. I usually say ninja level information. But I was thinking maybe Israeli army level situation for this. But they can't give ninjas information to people who would know how to use it. And they also don't know if their basil is correct data. And they don't know sometimes I hear back from people who are like, I talked to my doctor, you don't understand what I'm saying. I moved my basil up, he yelled at me, said you're going to get low, but I'm not low. Then I showed him I'm not low. And he still said, you're going to get low. This person now I believe is working with outdated information or doesn't have a good firm grasp about how insulin works. How is that doctor going to give you good advice about how to change your Pre-Bolus time by a few minutes to stop at 130 spike, they're going to look at a 130 spike and go this is perfect.
Deva Katz 58:29
And because that's exactly what I'm being told this is perfect. And I appreciate it. You know, I love a little gold sticker. It's adorable. But it just and I wonder if part of him is also feeling like okay, because of my age, you know, by the time the negative effects of you know, high glucose really affects me, you know?
Scott Benner 58:46
I don't know. Oh, you feel maybe you might he might be thinking it won't matter.
Deva Katz 58:51
Exactly. I wonder what exactly this might like maybe with a kid, you'd be more aggressive because you want them to have a really long full life and you don't want the effects of you know, the high blood sugars to hit them when you're still you know, in the in their prime but by me, so I guess she'll be at what's the difference? Yeah, I wonder if that's like the attitude for older people?
Unknown Speaker 59:10
I don't know. I don't know.
Scott Benner 59:11
I can tell you this. I've spoken to I believe I've spoken to 1000s of people about their blood sugar's at this point. And you're going to be okay. I can tell when I'm talking to people six months from now, you're gonna send me another note and you're gonna be like, Oh my god, Scott. I listened to more of the podcast and you're still my best friend. And my blood sugar's I figured out how to stop that spike now. And I'm still on MDI and it's going great or I got a pump and I that's how I you're you're going to figure it out. I think most of this is is information and drive like a drive to do it. And avoiding the the drama that comes with it because I think that every time you get sucked into the drama, you miss you miss the lessons. You know what I mean? Like when you're busy running around yelling, oh my god, my blood sugar, it always does this, this sucks. It's terrible. I hate diabetes. While you're doing that you're missing what's happening right in front of you, that is the answer to how to fix it next time. And then you just have to have that experience again until you finally shut up and pay attention and, and see what happened.
Deva Katz 1:00:19
So here's what we're, I don't get billed well enough on my experiences, which are right in front of me. And I'm gonna be actively working on this going low. And I'm sure this is across. I'm sure this is for other people as well. I can't imagine I'm only not out there who feels this way. It's terrifying. But feeling low and struggling to shake. It's so unpleasant. And so scary. I always now is I don't say always, I'm getting better. But I often overcorrect. It's like, okay, because I'm not feeling well in that moment. And so okay, if I don't eat all this, right, now, I'm gonna die, which is, of course, the feeling, you
Scott Benner 1:00:53
know, go into your body telling you, we need carbs, do it now Hurry
Deva Katz 1:00:57
up, if you don't eat so much. You know, this little bit there, there's a limit. And I'm still trying to like, sit on my hands and like, tell my husband, okay, hold me back. Because I don't want more. Because I know I ate enough. And I just need to wait 10 minutes, I'll be fine. And I'm still working on that. But there's a good example of, you know, what's going to happen. And you've been through this and you should learn your lesson. And yet here I am intelligent adult, not learning my lesson. And and I would like to feel like, wow, experiences should be imprinted in my brain. So they don't have to think about it so much. And I'm not there yet. I'm still thinking all the time. And experiences are not a seamless, and I want to get to the point where they will be and hopefully so
Scott Benner 1:01:37
yeah, and I have to say that if you're going to be slow. On one aspect of this, that's a good one to be slow on. You know what I mean? Like it's a real case, it could be a real safety situation, you don't want to just like, Can you imagine sitting there with a juice in your hand going now? I'm not going to and then pass out? Because you know what I mean? Because you're not you're not sure how to handle it yet. I mean, listen, at this point, I've seen my daughter's blood sugar tried to get low, so many times that I can like, you know, when people talk about, like I was low all night, I couldn't get up. That only happens like, twice a year here. Because when I see the low, I know how to impact it. And so once you learn how to do it, and when I say learn, I mean 100% understand how to do it, not just like I've done it three times, and I think I'm good at it now. You know, but like, really, you've got six, eight months, you've stopped dozens and dozens of lows. You can see on your on your data, especially if you're in a glucose monitor, right? You can see the pitch of falls. And you can figure it out, like, Listen, I can, I can correct an incredibly high blood sugar with a massive amount of insulin and introduce food that stops the insulin from creating a low. And I didn't learn that in two years, just so you know. It took it took longer than that.
Deva Katz 1:03:04
But at the low gets corrected much faster because of the large amount of insulin and then you give food how much later
Scott Benner 1:03:13
repeat that I didn't hear the first two words.
Deva Katz 1:03:15
Okay, my question was, you obviously gave a lot of insulin upfront because you wanted to be aggressive to treat the low. But now you have too much insulting now you have to give food, how much time did you wait between A and B?
Scott Benner 1:03:25
So there's the thing, I can't tell you that I can see it. But I can't tell you it's all feeling. I just look at that graph. And I'm like, now, and it's it's, it's just the art, it's it's not science, I'm sure there's a science to it. I'm sure that there's someone who could figure it out, I am not that person. And there's also a ton of variables in front of it that you don't have for your equation. And if there weren't, you wouldn't be 250 to begin with. You don't I mean, because once you're once you're 200, or 250, or 300, or 400, you've bought something so incredible. Incredibly, you can't possibly diagnose what you've botched. And so my idea there is a bunch of insulin for the number. And we all know that even when you do that it takes forever to fall down. But we need food in the future. So why don't we put in the bunch of insulin for the number and the insulin for the food and then catch the drop with the meal. And that's that's one of the ways that I crush high blood sugars. But I wouldn't tell somebody to do that. Unless they were really practiced and incredibly confident. And I also it's not something I would do without a glucose monitor as well. Because but but I can see the pitch in the line as it's dropping. And I have a feeling for time and distance and how much insulin when you introduce the food and you know, and then the goal is to bring that blood sugar in for like a smooth landing like a plane just down and flat and I am I'm pretty good at it. And other people are too who are listening. And you will be one day as well.
Deva Katz 1:05:04
I hope so. That is that is totally my goal. I have a last question on my list, which we didn't touch on. Have you heard of mine, your listeners, that a sensor is more accurate on one part of their body than another?
Scott Benner 1:05:18
I think that people's devices are person to person about where they get their best. Like, you'll hear people say, like, I put my pump on my thigh, it's terrific. And the next person's like, Oh, my thigh doesn't work. You know, I love the back of my arm, I get bad absorption. They're like, it's I think it's, you know, it's about that sensor wire finding that interstitial fluid. And, you know, and working there as best as possible. So you're looking for, you know, Meteor places, maybe places that it's not being pulled and torque laid on those kind of situations. But yeah, I would truly believe that you'll find places on your body where that libri will work better than others.
Unknown Speaker 1:06:00
Yeah, yeah. 100%.
Deva Katz 1:06:02
That's not unusual. I, I've been looking it up. And I haven't seen much written about that. But I was wondering about that, because my my right side is definitely not as accurate as my left side,
Scott Benner 1:06:13
I think it's important to remember that when these products come to market, that the FDA requires them to test it in areas and prove it in areas. And that that is a time consuming process. And if it wasn't a time consuming process, I wonder if they wouldn't test it in more areas. Meaning, I wonder if there aren't areas on some people that would work better than the FDA approved areas for other people. And if maybe you don't have to maybe create your own little science experiment to figure it out. I always bring up Chris Freeman, he's a former Olympic cross country skier has been on the show a couple times. The man has the body fat of a piece of wood. And, and I I've seen him where his on the pod and his Dexcom on his chest. Wow. So that's where he found that it worked for. Wow, yeah. You know, okay, yeah, figure it out. I think that most of this is figure it out. Like when people say to me how long how much I'm like, I don't know, figure it out, try this much, then try more and try a little sooner, a little later. Like, you got a figure if you're waiting for someone to tell you do this, in this exact amount at this exact time. And it's going to go perfectly. If you're expecting that you are misunderstanding how insulin works. You know,
Deva Katz 1:07:31
that was one of the first lines of yours that like that stuck with me where you said, I don't know more. And since I've heard that you you've said it, you know, a bunch of times, like it comes up a lot. Like I don't know, just more Yeah. And that stuck with me, because that's just how you have to do it. Don't be afraid. Be courageous, just do more. And then we'll figure it out later.
Scott Benner 1:07:52
In my mind, David, it just makes sense. If I use, you know, if I use one, and it's not enough, I mean, am I gonna just come back and try one every day and go, huh, don't work again, that that just doesn't make any sense. And maybe my Listen, maybe my arrogance or ignorance or, you know, or just my desire to not see that happen to my daughter allowed me finally to say, I'm just gonna try some more here and see what happens. But I think that for many, many people who are suffering from incredibly high blood sugars, I think it's fascinating that the first thing they don't think is I must not have enough insulin. But I guess what happens is eventually they pile up enough insulin in the wrong place, they crash low, and that's the touchstone on low, I got low today, I can't be low, I'll make my blood sugar even higher. So I don't get low, I see the thinking, but it's flawed and incorrect. You don't keep your blood sugar high, so that you don't get low, you keep your blood sugar stable, and good. So that you don't get high so that you don't get low. That's it, they're taking out the common sense that been just adding the fear. And, and, and all of that, by the way, forget diabetes for a second. The way we think about everything is informed by the generation before us. Right? We grow up with our parents telling us something and we either recognize it to be true. Believe it even though it's not true, or rebel against it, because we've seen it's not right. That's it. And you can apply that to politics, the way you think about civil rights you get and you're gonna you're gonna apply it to insulin. If you ever really go back and listen to this podcast straight through. I'm just living diabetes the way I live everything else. It's it. It's common sense. It's taking out emotion, taking out what I think is right because How would I know what's right? Um, you know, this is my first time with diabetes on my first day You know, like, why would I apply what I think to something I don't understand in any meaningful way. And then somebody comes in a doctor, some, some nice lady in a Facebook page, something like that, and says three random things to you, which now you believe to be absolutely Stone Cold fact, because that person knows more than you do. So now you just believe them word for it, the amount of people I see, trying to apply a statement they heard from someone else to their life, as if it's a puzzle that will fit is fascinating. Like sometimes you just see people read something online and misinterpret it. And then they try to apply it like a rule for the rest of their lives and won't let go of it. We are so indoctrinated into wanting to believe that someone else knows better than we do. It's a fascinating human thing.
Deva Katz 1:10:51
Oh, it's for sure. True, especially in the medical, cuz you're dealing with medical issues, because we want to feel like we're being taken care of like someone's taking care of us.
Scott Benner 1:11:01
Yeah, listen, I don't want to get to, like Wavy Gravy here with you, Dave. Uh, but a lot of the things you're comfortable about is really just, you know, society building up. But don't just think about Linus with his blanket, his line is safe, or is he holding the blanket? Maybe he's no more safe than everybody else in that group. But he feels better, because he's got his blanket, then I'm assuming at some point in his life, his parents told him you'll be safe with this buddy, you know, or he attached himself to it. And I think that, listen, I live in a nice neighborhood, right? You can appreciate this better than anybody probably, I live in a nice neighborhood, it's fairly safe. That does not mean that three guys can't come blowing through my front door right now with guns, right? My wife, steal my kids, take all my stuff and shoot me in the head. That doesn't mean that can't happen. And the fact that I genuinely believe that will never happen, is as much true as it is a fallacy that I've created in my head by telling myself I live in a safe neighborhood. Now, am I going to run around for the rest of my life thinking that this is going to happen? I am not. But a lot of the things that we're comforted by aren't real. And, you know, I think it happens around diabetes as well. I think we tell people things to make them feel comfortable. I think we tell people things to take away their guilt. I think we tell people things to take away their shame. And you know, I think for some people that might be necessary, because they might be teetering on the edge. But for the rest of us, we're hearing like, we're hearing those things. Like there's some sort of rules, and we're trying to apply them to using insulin and our lives. And to me, you know, if fire puts out, a fire is extinguished, is extinguished by water. And I spray a little bit of water on it and it doesn't go out. My first thought is, oh, this must be the special kind of fire. I think more water. And I don't I see this all in a very similar way.
Unknown Speaker 1:13:00
Oh, that's great. It's true. Just more just you just need more
Scott Benner 1:13:03
wood. I somebody said to me the other day, can you help me? When I put my kid in the car and go for long rides? It's blood sugar goes way up. I've doubled his basil and it won't come down. And my response was, why does the percentage that you move the Basal impact your thought process? Because Because now Now she believes? Well, I've doubled it. And that didn't work. So it's not that where I would say well have you tripled it? Have you quadrupled it? Maybe they're the kids body is presenting a need for insulin that you're not meeting. There is no other thing to do in this situation. Your blood sugar is higher, you need more insulin. That's it if your blood sugar's lower, you need less insulin. It's it's a fairly common sense idea. And and but but that percentage thing I want to get back to we all do that. My kid got diagnosed his his Basal rate was point two an hour. And now his blood sugar's to 300 all the time. I don't know I moved as Basal 2.4 I doubled it that has to be enough. Well, it's obviously not. But you get caught up in the number because that number now seems so big. Because you were working with such a small number to begin with. And by the way, if that kid's story was his base rate was two units an hour and now his his blood sugar's 300 all the time, and I moved it to 2.3 Well, it's still not right. And I know and there's, I hear people will type on talking about like, shame around. Like somehow someone said this to me recently. I wish I remember who it was because I thought it was such a great point. She said somehow in the diabetes community amongst adults using less insulin is kind of chic. Or seems like you're doing better if you're using less Have you ever had that thought?
Deva Katz 1:14:56
I not for myself, but I definitely heard it out there. Not for yourself. I feel like Well, that's what I need. That's what I need that actually never impacted me personally, but I've definitely heard it out there. Yeah, it's like a status symbol. Yeah, I'm because I'm a keto. So I don't need any insulin like that kind of attitude. But
Scott Benner 1:15:11
I'm not saying I'm not listening. I'm not saying that there's not some. I don't know, right. I'm not a doctor. And I think there are probably doctors who don't know as well. But I'm not saying that if you had some amazingly perfect diet that was, you know, 100% right for your body that you might not use less insulin. I think that's probably true. But there's a difference between reality. And what would be true in a perfect situation. And not every person can go eat a keto diet for the rest of their lives. Some people just can't pull it together, they can't do it, or they don't want to and, and all that's important, your desires are important. And so if you want to, you know, if you want to eat cheesecake, you need to understand how much insulin cheesecake takes. That's it. I don't I don't play I'll tell you. I don't see all this as being very complicated. Am I? Maybe I'm the one that's messed up. You
Deva Katz 1:16:04
know, it's, it's not complicated, but it's still taking up too much of my headspace.
Unknown Speaker 1:16:09
Yeah. But the
Deva Katz 1:16:10
idea of like, too much insulin. So that was in my list of five pages of worth of questions that I sold my endo after two months. So one of them was, is there a maximum amount of insulin that I can take a day? Like, is there a limit that I'm allowed in? How my how it impacts the rest of my body and everything. And he was like, you need to take such as you need. Right? That's his answer was spot on. But I wasn't in the system enough to really grasp what he meant. But he meant basically what you're saying, like, you need what you need. And that's what you take. And he didn't put a cap on how much I just have to get better at not thinking about it so much. And we're getting there.
Scott Benner 1:16:46
Well, I appreciate Listen, I again, this would be arm sir. armchair psychology from me. But if I was you, I'd look at myself and say, I'm doing really well. Maybe you should take a day off. Just don't like like you're, you're you're eating reasonably low carb, you're good at your meals. Why don't you just not think about it for a day?
Deva Katz 1:17:07
Are you serious? What not? Not check?
Scott Benner 1:17:09
No, just I mean, just? How does that libri work? Does it have alarms will tell you if you go over something
Unknown Speaker 1:17:15
it does not have alarms Now,
Scott Benner 1:17:18
hold on a second, Well, then let's put yourself on it. Like why don't we say this? What if you said I'll check before a meal. And I'll give myself insulin the way I usually do. And I'll pick a meal that I know I'm pretty good at. And then I will thoughtfully not look at my blood sugar again for two hours. Oh, wow. Right? And then because it's probably going to go the way you expect because you sound like you're pretty good at I mean, how often do you see some
Deva Katz 1:17:46
lady sweating? listening to you say that I am already sweating. But you know what? I take your challenge. I'm gonna do it. Even though I'm sweating.
Scott Benner 1:17:54
Try it. And then what's the worst that could happen? Right? And then look, and then because what it's going to prove is it was okay. Because you know what you're doing? And then you'll be able to stop thinking about it, then you can look to look, not look, because you're afraid you're about to see a clown under your bed with a knife. And you have to look right. So yeah, I will say this. If you had I don't know what the situation is in Israel, but the Dexcom g six would fix your problem.
Deva Katz 1:18:20
I know what the alarms are at the moment, I'd have to pay for it out of pocket. Yeah, I believe it's free. But I would have to pay for the Dexcom I'm
Scott Benner 1:18:27
not telling you to spend money you don't have what I'm telling you is that if you could set an alarm for 130, blood sugar, and eat, then you could say to yourself, I don't have to think about this again. Unless I hear this alarm. Right. And that will take away a lot of that anxiety, I think
Unknown Speaker 1:18:43
Yeah, yeah.
Scott Benner 1:18:44
Yeah. Because right now, you have the same anxiety that people have who just have a meter. You just don't have to poke your finger to, to check on your anxiety to hold the thing up to the thing. So I don't know like if I was you, I would take steps towards trying to alleviate that. Are you checking overnight?
Deva Katz 1:19:06
Am I checking over night?
Scott Benner 1:19:08
You're not waking up to check?
Deva Katz 1:19:09
No, no, no, I I'm at this point I was in the beginning. But now I'm very confident that my Basal overnight is going to be straight line and it is and I can see when I wake up that Oh, look that it's been a straight line. I've you know if something weird happens, there's no reason to check in. I
Scott Benner 1:19:24
know, I would I you know if you can't make yourself do the thing. I said try that first, though. But if you can't, I would go to the weekend and tell your husband, here's the thing to check my Libra check it, write the number down but do not tell me what the number is under this number or over this number. So then you'll know you're safe because he hasn't come to you. And yet you'll have a little little feeling for what's happening. Okay, there's a lot of you have to trick your brain to stop being crazy, David.
Deva Katz 1:19:56
It's amazing how easy it is for the brain to become crazy and I thought it was the company same person. And apparently I'm not listening. But it's amazing how, how insane the brain can make you. Like, yeah,
Scott Benner 1:20:06
I grew up in the northeast, if you grew up in a Jewish household in New York, with nine people, there's no way you're not crazy. You know,
Unknown Speaker 1:20:15
the bedroom and half an apartment.
Scott Benner 1:20:18
My best friend, my best one of my best friends is, is about the most neurotic person I've ever seen in my entire life. And he worries about things that I can't wrap my brain around worrying. And when we talk, I'll be like, Brad, what? Why would you even think about that? And he's like, well, because and then you can see him build a narrative around. What if? And then what if? And then what if? And his what ifs spiral out of control? And I'm like, do any of those things ever happened? And you'll actually say, and he means that he's not being funny. He goes, No, but what if they do? And I'm like, Yo, man, you gotta calm down. I don't know another way to say that. Like, I think there's a way to plan without worry. And there's an episode of this podcast, and I don't want to repeat myself too much. But worry is a waste of imagination. That is literally you making up something that may happen. It's you making up a what if? And that's not, that's not valuable. You also have to be healthy. In your mind, not just your body.
Deva Katz 1:21:23
Yeah, yeah, yeah. So that's my next that's my next step. After I take my effort, take your challenge, to go two hours without checking, okay.
Scott Benner 1:21:33
And then just kind of keep stretching that out. And now it turns out, you cannot be my best friend, because I cannot take one more person who's always what I think. It's I feel for you, because I, he, it seems exhausting.
Deva Katz 1:21:49
It's exhausting. But I think you've given me hope that it's not gonna be forever, like, I'm gonna get a little bit more into it. And it's gonna become seamless, because at the moment, it's, um, well, but it's exhausting.
Scott Benner 1:22:00
I believe that I really do. I really do. I think you can get to it, especially with your you have good focus, you understand the nuts and bolts, you know, the rest of the part is just talking yourself into, into believing that what you know is going to happen is going to happen. That really is
Deva Katz 1:22:17
known as talk myself into being less crazy. We're working on that
Scott Benner 1:22:20
there's a defining diabetes episode called that because I think it's that I think it's incredibly important to just see something happen so many times that you believe it, so that you don't constantly wonder what if that's all right. Yeah, you'll get to it. You really well,
Unknown Speaker 1:22:35
I will. I will keep you posted.
Scott Benner 1:22:38
I appreciate that. I need to apologize to you. And thank you for the same thing. You really inspired me today. I was incredibly articulate. But But I always articulate what I spoke more than I meant to in this one. But you got me rolling on things. And the thoughts were coming freely. And I just didn't want to sometimes I found her through things I understand. And sometimes I don't. But you caught me. Very clear. And, and I think this is going to be a favorite episode for people because I think we'd set a lot of important things in this.
Deva Katz 1:23:12
So do I get to be considered delightful?
Scott Benner 1:23:16
Yes, you are delightful. Delightful. I don't know why it means that much for me, but I definitely found you to be delightful.
Unknown Speaker 1:23:24
I thank you very much. That means a lot.
Scott Benner 1:23:27
I also appreciate you doing this. What it What time is it where you are,
Deva Katz 1:23:30
it is now a quarter to eight the evening.
Scott Benner 1:23:33
am eating up your your your your evening time. I'm sorry.
Deva Katz 1:23:36
It's all good. It's all good. It's nice. Take a break from the kids for a while. So it's all good. I locked the door. No one's bothering me. Our piece. It's been great.
Scott Benner 1:23:45
Yeah, don't tell Kelly this, but sometimes when I'm folding the laundry, I'm just so happy to be by myself. I hate what I'm doing. But I like that I'm doing it by myself.
Deva Katz 1:23:56
Exactly. Sometimes by myself is it's a good thing. Scott, thank you very, very much. You've been you've been a life changer. And and I and I mean that in all sincerity, you know, a life changer. And and I hope that you just get paid no payback thousandfold for what you're doing for the diabetic community.
Scott Benner 1:24:16
I didn't mean that, well, you're kind to say that and I appreciate it. And I, I I feel like I feel like I get more out of this than you guys though. That's for certain. First of all, I've been married a long time. So if I start pontificating, like I did today, Kelly's walking out of the room, just you know, when I started talking about, you know, societal norms and you know, rk she's like, Oh, here he goes. And then then she's, she's out. So I get I get somewhere to stretch my legs. I also get to have I mean this, and I think it's as valuable for you all as it is for me. But having these conversations about what other people would find to be mundane diabetes ideas. They reinforce them for me and I have more than one thought. I've never had before. While I'm on the podcast, I think this podcast is helping Arden as much as it's helping you guys, because, you know, I think we're honing a blade here together. And I think it I think it goes both ways. So I appreciate it as well.
Deva Katz 1:25:15
It's like what we know now about diabetes and everything needs to light years ahead of what, you know, I knew as a seven year old when my sister got diagnosed, you know, it's so I'm so grateful for people, you know, like you out there teaching, because otherwise, you know, we'd still be back using, you know, urine sticks, you know, how helpful would that?
Scott Benner 1:25:34
Well, yeah, I mean, you can't, you can't undervalue the movement of technology. It's
Deva Katz 1:25:40
it's been, it's been incredible. Yeah. But the technology doesn't help if you don't know what you're doing with it. Yeah, I'm wearing a sensor. That's very nice. If I didn't understand it, that wouldn't help me at all.
Scott Benner 1:25:49
I'm beginning to lump I'm beginning to lump this podcast in with that, because it's a it's a tool to talk to people that that just didn't exist before this kind of text. I mean, honestly, I'm sitting with a microphone and a computer and some equipment most people don't have. But other than that, you know, I'm just putting my thoughts online and they're reaching. I am, I think that this is part of it. I think texting is an amazing part of parenting with diabetes. But I think that insulin pumps and glucose monitors and insulin that works better, that kind of stuff, even you know, even to say now, like glucagon, being in a hypo pen like that, that that's a big deal for people who are scared, you know, and there are a lot of people were scared. And then this podcast, being able to talk to people like this, I think is incredibly valuable. I have to say, I was very proud of myself at the point in the show, when you said that you started listening to a bunch of diabetes podcasts, but now only listened to this one. I was proud of myself because I I want very badly to know what those shows are. But I don't want you to say,
Deva Katz 1:26:53
I'm not gonna say the names because you know, that's rude. But I will say what the main focus was just like a lot of all your Okay, you're so wonderful, you're fine, you're fine. You're fine. Just like commiserating and venting, which I guess for some people, that's helpful. But for me, it's like, I don't want to vent. I don't want to commiserate. I want to learn, I want to do better. But that's the whole point how we make this better? Why are you accepting the status quo by venting and commiserating and having everyone you know, hug you? That's not what this is about, you know, this is you need to learn to do this better. And if you're not learning, then I don't have time for you. If you're not learning, then what's the point?
Scott Benner 1:27:34
It's funny, because in my heart, I think I do the comfort stuff, too. I just think I spent about 30 seconds on it, then we move on to the stuff that makes you not feel like you need to be comforted anymore.
Deva Katz 1:27:43
Exactly. Exactly. Yeah, exactly. And I'm on like, a lot of these online forums, you see that as well. So I just thought, well, that because I'm not interested in comfort I have, you know, I have that in my life right now. I need to learn how am I making this better? And, and that's what you given us. And that's, that's like I said, life changing, life changing, literally life changing, not just, you know, the fuzzy wuzzy, comfort kind of life changing literally life changing the way I'm gonna be able to live to 100 with both my feet and tech, you know, that's my goal. When you
Scott Benner 1:28:12
hear me say that, it's nice to know, you're not alone at 2am when you're fighting Alo, but it would be better to not be finding a low 2am. That's what I'm, that's what I'm saying. You know, I was approached this week about writing a blog post for a pretty big blog, right? And they're like, we keep hearing about your podcast, and would you come write something I'm like, I don't want to, but alright, you know, so I started talking to them about it. And right away, it's like, well, don't talk about any of the things that you talk about in the podcast. And I was like, I was like, why she's like, we you know, like, you know nothing about how you use insulin or about and I was like, so you heard about me, because the podcast is so popular. But you would like me not to say any of the things in the blog post that we talked about in the podcast, is that correct? And she's like, yeah, that's what I need. And I said, you know, that's why the podcast is so popular, right? And she said, why I said, cuz the rest of you are just pumping out banal bullsh people with diabetes. That's why that's that's why this bar This podcast is popular. You think it's me? If it's me, it's because I'm saying it. But it's, it could be anybody. It could be anybody that understood it was willing to speak up. It could be but now guess what? Now it's too late. Now the podcast is so popular. I'm so far ahead of it. It just doesn't. It's an institution at this point. Like your you know what I mean? It's it's a and and I've always been driven by that. Even when I wrote on a blog. I just would look up and think, why are you all saying the same unhelpful stuff over and over again, people are like, Oh, you know what, it's a great blog. This one does, and you go read it. You couldn't tell the difference between that one and that one. It was all just like you were talking about it. And it's it's really nice stuff. And I and I genuinely think it has an incredible amount of value. But how many people do we need saying It's just the number we need 4000 people saying that, because at some point, you know, in a in an attempt to make people feel better, what you make them is apathetic. And that's not helping them as much as you think it is
Deva Katz 1:30:19
that they stop trying to help themselves. And then before you know it, you know, half the communities, you know, yeah. And that makes no sense to me.
Scott Benner 1:30:26
It's a huge, it's a it's a huge, it really is. It's the communication equivalent of people misunderstanding, the baseline song I saw low. So now I keep my blood sugar at 250. Some people have a lot of anxiety around that number. So I'm going to say out loud to everyone, it's just a number. But what we're really trying to do is protect the people who have like a genuine anxiety issue around it. So is it impossible? Why is it always I keep saying this, but why is everything always one of the other? Isn't it possible to say, Hey, listen, if you're experiencing a lot of anxiety around seeing your blood sugar, I really encourage you to think about it as a number. And for the rest of you who are not feeling that here are some ways to keep that number from being anxiety ridden to begin with, and for you with the anxiety will go slower with you. And we're going to find a way to get this okay for you. And by the way, some people fall through the cracks. And that's no one's problem. No, excuse me, no one's fault. Like why why is common sense? Why do we always dumb everything down to the very bottom of everything? You know, what's incredible at this moment, David? I'm incredibly liberal. And I sound conservative. So but but you can't just say it you can't least common denominators, people's health, that
Deva Katz 1:31:47
well, that's what the doctors are doing.
Scott Benner 1:31:49
Yeah, no, no, they're, they're ruining nine people's health because one person can't handle the information. And then why? That just doesn't make any sense. No, you know, I'm not up for that, I guess. And so if that,
Deva Katz 1:32:04
obviously not, because you putting in all this time and energy and on behalf of all of you, like I said, the diabetic community, we appreciate it.
Scott Benner 1:32:11
I appreciate you saying that. But listen,
Unknown Speaker 1:32:14
I need to leave a positive Have an awesome day.
Scott Benner 1:32:17
Yeah, but no, no, I was gonna tell you, I need to leave a repository behind for my daughter. That's what this podcast is that it's helping all you guys is a nice bonus. But I need to take what's in my head and put it here. Because I think one day I'm gonna drop dead, right? And she's gonna go, huh? How was my dad so good at this diabetes thing? Because she's not me. Right? People want to make that point. all adults love to ask me Well, how are you gonna pass this on to your daughter. That's another fallacy. That's another I live in a safe neighborhood. I don't know how you're gonna pass it on to your daughter, you can't. Because they're little, and their brains are mushy. And they don't have, they don't have any of my life experiences. They don't jump to conclusions about common sense, because they don't have common sense. They're still building all that stuff. I need this podcast to be available that day, my daughter, as an adult realizes, holy, that guy knew what he was talking about. And
Unknown Speaker 1:33:11
about myself. And now
Scott Benner 1:33:13
I'm going to go back and listen to that podcast, I'm going to take 500 1000 hours of my life and make myself as good at diabetes as my dad was. But and maybe she won't do that. But if she has that thought, this is going to be here for it. Because I'm going to pay what I'm my goal was to save up enough money to pay so that the, the podcast can be available, you know, forever. Like I i one of the things I want to do at my death is pay the company who host this podcast to keep hosting. Well, you know, so yeah, it just it it is that it's just, you can't you can't learn life in a day. And my path somehow turned me into the kind of person who sees diabetes, the way I see it, and talks about it the way I talk about it. Just like when you hear Jenny, like you don't think there are other smart people who have had diabetes for 33 years who are into fitness. But why is Jenny so good at talking about it? Right? It's It's her whole life. It's a it's a, it's an amalgam of who she is, when she puts it out there. I think that's the same for me. And for anybody else who's good at something. You didn't just sit down one day, I didn't, if anybody thinks I just thought, Oh, I'm gonna make a diabetes podcast. And I'll just do it really good. So people like it. That's not how this works. I could have started this podcast, and it could have been crap, and no one could have listened to it. And I'll tell you there are a lot of other people out there proven that with a lot of other podcasts, and I don't, I don't just read about diabetes. I mean, just in general, people have that thought like, Oh, I'm interesting. And then they start talking. I'm like, oh, like, I've tried some podcasts and I'm eight minutes into it. I think. No one could be listening to this. You know, like, like, Who would listen to this? I don't think the guy making it would listen to it.
Unknown Speaker 1:35:05
But that again, it's not a it's not a brag. It's, it's just what it is, like,
Scott Benner 1:35:11
I can't, I can't do a high jump, I can't run a 60 yard dash and in, you know, in an incredible amount of time, they're things I'm terrible at. I'm good at this. So that's dumb luck. It really is. I've had people say to me, I'm sorry, Your daughter has diabetes, but saved my life. You know, so,
Deva Katz 1:35:34
I am kind of sorry, she has diabetes, but it's, it's, uh, if she has to have it, I'm glad that she's in your family. Right? You're there for her. I
Scott Benner 1:35:42
think the unspoken part of that sentence is if some kids gonna get diabetes, the daughter of the guy who can talk about diabetes, like,
Unknown Speaker 1:35:51
is that a horrible thing to say?
Unknown Speaker 1:35:52
I don't think so.
Deva Katz 1:35:53
I get at it. It's the reality you You are the best person to be caring for her. So
Scott Benner 1:36:01
let's leave it with on the best person that makes me feel.
Unknown Speaker 1:36:06
I like that.
Scott Benner 1:36:07
I'm kidding. Of course, after all this talking, someone's gonna take that incredibly seriously. But, uh, but But no, seriously, I'm just happy. I'm literally happy that the thing I did helped you. Yeah, that's all. It's and my point, my greater point is that I could have been a person who put this out in the world, and you could have listened to it and gone. Well, this is not valuable, and walked away from it. And I'm just happy that it worked out this way. And by the way, I mean, this, if I if I, if I shouldn't be doing this, meaning if people don't connect with it, I would very much want to move on to something else. Like I would be horrified to think that I was pumping out a podcast for people every week that nobody listened to and nobody cared about. Like, why am I wasting my time with that? You know,
Deva Katz 1:36:55
okay, well, let me put that back at you. How long before this episode airs?
Scott Benner 1:36:59
Oh, well, I really liked it. So it's gonna move way off.
Deva Katz 1:37:03
I'm just gonna save you have episodes three, four months out? Clearly you have What to say? And clearly, people are out there listening. That's what I'm saying. I know, often you um, you have, you know, episodes, you know, far out into the future. So
Scott Benner 1:37:18
you're saying a lot to do. If this went into the general rotation, you'd hear it in March of 2021. But Wow, I had a good time with it. So I think it's gonna go go out sooner. Plus, you're you're in a really unique situation. I've had a lot of men lately, and I need to mix in some women. So that's my super By the way, if anybody's listening trying to figure out the you're like, Oh, I wonder why his podcast is more popular than mine. I mixed men and women back and forth, which by the way, has nothing to do why it's popular. I just think it's a nice thing to do. So you guys don't hear similar voices like week after week, you know? But anyway, alright. You were terrific. You are on fire. By the way if your husband ever goes down, I don't know if I want to live in Israel. But I think you and I would get along. So I'm not taking care of those kids just
Deva Katz 1:38:04
Well, you my best friend. So certainly that has to mean something.
Scott Benner 1:38:07
I do think it does. If by the way, please.
Unknown Speaker 1:38:12
Have a good day. You
Scott Benner 1:38:13
have a great day. I really
Unknown Speaker 1:38:14
did. Are you gonna be lunch? Alright, take care. Okay, bye. Did I tell
Scott Benner 1:38:23
you this was gonna be a great episode. Why would I lie? There's no reason. Thank you so much, David, for coming on the show and sharing your broad expansive story and your heart. It was really lovely. I want to just point out that at the end of the episode, I told her it would be out like a couple of months ago, because I was moving it up. But the great episodes have just piled up to the point where I can't do that. I'd have to start giving you guys like five episodes a week to get them out at the pace that I would have needed to to keep my promise. There are just too many good episodes. I gotta paste them a little bit. You guys can't listen every day. You have lives. I mean, I imagine you have a life.
Don't forget to go to the T one D exchange. That's at T one d exchange.org. forward slash juicebox. Click on join our registry now and fill out the brief survey. All you need to be is a type one, the caregiver of type one be from the United States and have a few minutes to want to do a nice thing for other people. That's all you got to be if you're those things, this is gonna work out great for you. If you're new to the podcast and looking for the diabetes pro tip series, it begins at Episode 210 in your podcast app, or you can find them at Juicebox Podcast comm or diabetes pro tip calm, be defining diabetes series is also there, as well as links to all the things about the podcast that you might care about Juicebox podcast.com Scroll down, take a look. All the after dark episodes are there and all the ones about algorithm based pumping. There's some blog posts that I think are pretty terrific. recent episodes pro tip episodes, so much to choose from. If you're listening in a podcast that please hit subscribe or follow. And of course, if you're enjoying the show, please share it with someone who you think might also enjoy it.
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