#771 Meet The Flintstones

Katie's child has type 1 diabetes.

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

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

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

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

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

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

Katie 2:58
I talk with my hands constantly.

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

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

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

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

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

Katie 3:42
She is eight years old.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Katie 11:49
You're welcome. Sorry,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Katie 38:40
No, in Minnesota, Minnesota.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Scott Benner 44:32
goes on and on.

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

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

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

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

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

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

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

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

Katie 52:00
Yes, I do.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Katie 1:36:46
Man a problem

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

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#770 Hate Listen

Melena has type 1 diabetes.

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

Scott Benner 0:00
Hello friends, you're listening to Episode 770 of the Juicebox Podcast. Cue the music

on today's show we're going to be speaking with Molina, she's 20 years old lives in Germany and has had type one diabetes for most of her life. While you're listening to Molina tell her story, 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. I'm looking for type one or type one caregivers who are US residents to go to T one D exchange.org. Forward slash juice box and fill out a very short survey. When you complete the survey. You have helped me You have helped yourself and you've helped other people living with type one diabetes, T one D exchange.org. Forward slash juicebox. easy questions. You know the answers to these questions. They're not super difficult. They are completely anonymous. The questions and the entire thing are HIPAA compliant. You're safe, you're covered and you're helping T one D exchange.org. Forward slash juicebox take you fewer than 10 minutes. Damn custody time.

Let's hope that said what I thought I did. This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitoring system. And the Dexcom G seven which was just released in the United Kingdom, Ireland, Germany, Austria and Hong Kong, more countries the GM very soon, learn more or get started today@dexcom.com forward slash juicebox you may be eligible for a free 10 day trial, the Dexcom G six Learn more at my link. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox

Melena 2:16
Hi, my name is Melina. I'm 20 years old. I live in South Germany. And I've had diabetes for I think 16 years.

Scott Benner 2:28
You think 16 years? I think I'm just doing the math. Yeah. Soon to be 17 years. You know, I kind of like it when people don't exactly know. Because it just feels so normal. They're like I don't know, I've had it for a while now. diagnosed as a kid. And are you do you live on your own? You do right?

Melena 2:52
Um, well, I am I'm kind of an in between situation. So I'm currently working in internship quite close to home. So I spend like the week at my own flat, and I go home during the weekends. Oh,

Scott Benner 3:10
that's nice. So you see you live with your parents, but you have this situation where you're gone for a little while at your own place. Exactly. Excellent. So you're out of college, or this is part of part of university.

Melena 3:23
This is like the last part of college. Okay. I'm finishing up now.

Scott Benner 3:28
Nice. What's your degree in?

Melena 3:31
Psychology?

Scott Benner 3:33
Excellent. Don't pick me apart too much. Okay, while we're doing this, if you notice, I'm really unstable. Tell me privately. I you know what, I don't care. Tell me here if you want to. So what made you interested in that line of work?

Melena 3:49
Well, I got I shouldn't be telling this.

Scott Benner 3:55
This sounds like a good start. Believe it. Let's tell us, let's tell me some things. You don't want to tell anybody?

Melena 4:00
No. I'm more interested in like General Psychology not like therapy or anything like that. And what kind of got me interested is we live in a world with so much technology around us where human error is kind of one of the biggest pods. So understanding why we as humans are as fallible as we are was like one of my major motivations.

Scott Benner 4:30
I like that. Have you figured anything out so far?

Melena 4:35
Well, a lot, actually. I mean, humans have so many biases and make so many errors, which I mean, we all make the same mistakes. Technically. Yeah. So that's been interesting.

Scott Benner 4:56
So simple stuff like we have a preconceived notion about something? And then even if the correct answer is presented to us, we can't see it. And not only can we not see it, but we'll defend our position. Is that right?

Melena 5:10
Exactly? Yeah. Well, like, the first impression you get off a person is going to influence your entire behavior towards the person. Even if everything that happened after your first meeting is completely unrelated to that,

Scott Benner 5:25
if the person you met was aware of that, can they change how you feel about them?

Melena 5:32
Not really, actually, that's one of the hardest things about biases that are very, very hard to avoid, even if you yourself are aware of them.

Scott Benner 5:44
Is it uncommon for people to be aware of them?

Melena 5:48
I mean, most people don't really think about them at all. So there, there's kind of not not a desire for awareness. I mean, in our social behavior, and everything regarding to that we make so many small, unconscious decisions. I don't think people even spend time thinking about this. And therefore there's not that much to be aware about, in most people's Well, minds.

Scott Benner 6:17
Is this, why we see, what's an example why we see people save vote against their own best interest sometimes?

Melena 6:28
That's one example. Yes, yeah.

Scott Benner 6:30
Like you've you just somebody has sold you a bill of goods, and you believe in it so much, that you can look in the face of it and say, I'm going to I'm going to support this, even though even though it's going to hurt you? Yes, yeah. It's fantastic, isn't it? Is it because we're on? What's the word I want? Is it because our minds are still mostly undeveloped?

Melena 6:58
Well, I, I don't actually know. I have to be homeless? Yeah, um, I think it's because there's so many things going on in our minds. I mean, the part of our decision making, which we experienced consciously is a very small part, there are very many things, basically, open browser taps in the back of our head, okay, which are always working. And so I actually think this is an effect of our mind doing a lot of things and our consciousness being very limited.

Scott Benner 7:37
So, so what, what should we do? Should we put a like, I guess maybe all you could do is try to be ultra aware of your actions and reactions, and judge them in the moment and then have some sort of a process set up in your own life where you can put a stop to them, and read and then and then you make the next decision you would make about that? That subject, I would guess then would be more conscious and less coming from one of those open tabs.

Melena 8:08
Yeah, yeah. So as I said before, like, the biggest part in fighting all of these unconscious effects is awareness of them. Like if you consciously start thinking about, hey, why don't I like this person, for example? You're you tend to be more aware of the reasons things like this happen.

Scott Benner 8:31
It's interesting. I think it's, have you found ways I should say that are applicable to diabetes?

Melena 8:40
Well, I mean, it's kind of this thing, I have thought about this in the past. And I think maybe it's people who like to stick to like one kind of technology, like people who don't want to pump because they're so used to their pants, pants like this, this notion of their pants working. And this being the thing that once helped them that they want don't want to get, like another option. So I think this is kind of familiar.

Scott Benner 9:19
I can tell you a place that maybe

Melena 9:20
if like when way of therapy has been very successful in the past, and you don't want to try new things, because you've got like, the positive effect of this going on.

Scott Benner 9:36
I've seen it I think a little when people talk about insulin pricing as an example. Because you have this very obvious reaction, like this shouldn't be this expensive, right? We shouldn't.

Melena 9:49
I'm gonna interrupt you right there. I'm from Germany.

Scott Benner 9:55
You don't pay for your insulin.

Melena 9:56
Identify for my insulin.

Scott Benner 9:59
Well, We'll pick something else, then it's, you know, let's see, I don't know, I don't I don't have an apples to apples. I'm just gonna have to keep going with my description for a second. But you know insolence expensive here. And it's, you know, if you're covered by insurance for some people, it almost cost nothing I would, I would expect that we don't pay, you know, out of pocket, it's easy to say I probably pay $20 a month or something for insulin, which isn't true, we have a health insurance plan, which I think we probably contribute. Oh, gosh, by the time you pay for the plan every month out of your paycheck, and then there's an amount of money, you have to pay cash in the beginning, I probably pay $8,000 a year for health insurance. So you know, to say that insolence $20 isn't really fair. All of our doctor's appointments, aren't in support supplies, etc. cost us, you know, I bet we pay eight to $10,000 a year for all that stuff. And then there's copays where you sometimes show up at an office and have to still pay $20 or $40, and etc, medications, etc. But but the point is, is that when you hear people argue about it and say it should be free, I say I say yes, it definitely should be free. And they'll say, well, in Germany, it's free. Why can't we do that here? And then I don't know, I might say, well, then that's just not how it's set up here right now, you know, and there are people who make money off of it in all different kinds of ways. So just saying that you think it should be free is not going to fix it? Right, you need, you need to see a bigger picture. And there are ways to attack the problems. Now we're not talking about insulin prices anymore. We're talking about democracy, commerce, you know, you know how people make money, but but when the argument happens, it's just like, This is wrong. And I'm like, No, I, I know it's wrong. Now get past that and come up with an answer. And then sometimes the answers like, freak me out, like I had a person tell me one time. Pharmaceutical companies shouldn't have PR departments, they shouldn't run ads, and then they would save all kinds of money on that. And then that money, they could take off the price of insulin. I said, Well, that's, I mean, okay, like, I don't know if that's a real idea or not, but take your opinion. And we'll keep moving forward, I said, What happens if one of the PR executives has diabetes, and now he doesn't have a job, and now he can't afford his and his insulin, but now we give the money we were gonna give him we give it to somebody else, now they can afford us a different really fix the problem, you've moved the problem around a little bit. And then the response is so emotional, that they can't talk through the real problem. And I wonder if that's not a similar situation, where you just keep having an emotional response to something, instead of being able to step back, and then work through the rest of it, like all of the other problems, and I mean, it's a little bit of a stretch to attach it to diabetes, but it is what happens to people they get caught in whatever kind of occurs to them. First of this isn't right now, this is what I defend, or someone else steps up and goes, well, people have to make money too. And then that's the perspective that they defend. Nobody ever stands in the middle and tries to absorb all of the complexity. I guess, that that's, that's uncommon. Sometimes.

Melena 13:29
I think I kind of the comparison I'm thinking of is the the example you always use when someone's always going low, because their Basal is technically too low. The Basal rates not strong enough, and they keep correcting. And they always think like, there's so there must be too much insulin going on, which technically it is because of the corrections. But the core of the problem if they would step away from the current situation would be that it's actually not enough.

Scott Benner 14:03
Yeah. I gotcha. That's I tell I talked about all the time, you must like this podcast

Melena 14:10
might have listened to some episodes.

Scott Benner 14:16
How long have you been aware of the podcast?

Melena 14:20
Um, I think late 2018, early 2019.

Scott Benner 14:27
Nice. I was really hitting my stride then. Although I think I've done some good stuff prior to that. There just weren't as many people. There weren't as many people listening at that point. How did you find

Melena 14:40
it? Um, actually, it was kind of like, and I don't want to call it an accident, but I just I scrolled past it because when I moved out from my parents for university, I was living Yes, in a single person fled. So during most of the I just I had no one to talk to. And so I generally started listening to podcasts. And, well, there are only so many true crime podcasts out there. And so I kind of just went around for looking for, like things I could listen to, which would interest me. And diabetes was not something I was thinking about. But the moment it showed up on I think it was Spotify. I was kind of thinking, Well, I have diabetes. I could just as well listen to this.

Scott Benner 15:46
I appreciate that. I know of the true crime. The true crime podcasts are apparently huge. With with, especially with women, apparently. I don't understand why, but I'm glad that you were able to get away from them. I've just looked while you're talking. And Germany is my fifth most popular country. Oh, okay. You beat beat New Zealand, who, by the way, New Zealand, you're dropping off a little bit. So let's try to get it together. Okay. That's a win when you find it, and I'm American, does that change anything for you?

Melena 16:22
Not really, um, I mean, I listen to a lot of podcasts and English, and I watch most of the TV I watched watching English, though, doesn't really make a difference. And we also like use what's what's the unit, or milligrams per deciliter for blood sugar levels. So it was actually kind of helpful. Americans.

Scott Benner 16:51
Okay, what happens when you realize I'm now listening to a diabetes podcast by an American who doesn't have diabetes?

Melena 16:59
Well, I'm, I'm thinking of how I'm gonna express myself here. First, I was kind of mad at you, maybe. Because the thing is, when I was diagnosed when I was four, and up until my teen years, my father was the person responsible for most of all other diabetes related things. And that cause us to not have such a great relationship to some of my teen years. So listening to a father talking about his daughter's diabetes, which she manages, um, I mean, I was interested I was I was also kind of like, I didn't want to say hate listening, but it kind of started is that

Scott Benner 17:57
I imagine a lot of people hate Listen, but that's that's okay with me mad because I shouldn't be talking about something I don't have or mad because I'm doing something with my daughter you wish your dad did? Or what's this? How does that hit? You?

Melena 18:14
know, I kind of I think like, looking at someone's blood sugar, treating someone with insulin, always like the idea of back when I was growing up Dexcom was not as big as it is now. It wasn't a thing in the early years, even like the idea of when I was like, I don't know, in my early teens, or late late childhood, somewhere around that. If my father would have had like, like a Dexcom to look at and would have basically followed me around, like, Western looking at my numbers. I kind of think this is a scary thing for me to imagine.

Scott Benner 19:04
Would it feel in true Civ? Or you just wouldn't want your dad that close all the time? Or,

Melena 19:10
um, I would feel intrusive and also like being in control of some someone else like, pretty much completely. So. Yeah.

Scott Benner 19:23
Okay. I gotcha. That makes sense to me. How long did you listen with the stain before you started to think? I like this podcast, and I like what we're talking about.

Melena 19:37
Well, once I started trying the things you actually were talking about, ah, well, I was, as I said, I was living on my own I was going to universities, so I kind of made my own schedule. I could time when and what I ate, so I had a lot of time to drain I try new things with using insulin with different foods and stuff. And once like I got into this off, I've mentioned up to until that point, I've basically managed my diabetes the same way since I started managing on my own. And with the ideas I got from the podcast, I started to well have better control, see the better numbers, and there was kind of thinking like, this guy might actually know what he's talking about.

Scott Benner 20:34
So you, you know, people might think I did this on purpose, but I did not know Molina's background and psychology before we started doing this. So I just wanted to be clear that I did not know about that before we started but basically, you just went through the entire process that we spoke about in the beginning, like having a preconceived notion of something but then you broke free of it, which is a now we know from the earlier part of our conversation is a is a really a kind of a big celebration to have, because it's uncommon. So you're saying that most commonly people would listen to it have their reaction and not be able to adjust? So did you do something to help yourself adjust or do you think that the desperation that diabetes puts you in just makes you open to listen to different ideas?

Melena 21:28
I mean, I would not call it desperation because I the way I was managing my diabetes I did not have any issues so I was I was not looking for answers I basically stumbled upon them I see um, but I just think like the effects the management methods had on my blood sugar were greater than any of my preconceived notions so the the good results I got out of listening were like greater than well, then that your hate me not liking Yeah,

Scott Benner 22:09
I might call this episode hate Listen, but that's, that's not decided yet. Okay, so we're like what was your agency when you were I don't know 17 or 18.

Je voc hypo penne has no visible needle, and is a premixed auto injector of glucagon for treatment of very low blood sugar. In adults and kids with diabetes ages two and above. Find out more go to Jeeva glucagon.com forward slash juice box. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk. With the Dexcom G six continuous glucose monitor, you can see your glucose numbers or the glucose numbers of a loved one with just a quick glance at your smart device or Dexcom receiver get alerted when your glucose levels are heading high or low and share your data with up to 10 followers. That's just a little bit of what the Dexcom GS six offers. The Dexcom G six offers trend lines to show you where your glucose levels are headed, and how fast they're getting there. So that you can take action. Maybe you've miscounted carbs and your blood sugar is rising. With the Dexcom G six, you'll be alerted before the problem gets out of hand. Same with a low blood sugar heading in the wrong direction. A couple of beeps on your smart device where your receiver will let you know to take a look. These alerts will allow you to take action before it's too late dexcom.com forward slash juice box head over now to get started with the Dexcom G six or to see if you're eligible for a free 10 day trial of the GS six. That'd be pretty cool, wouldn't it dexcom.com forward slash juice box links in the show notes links at juicebox podcast.com really is the best thing you could do for yourself. Anecdotally, my daughter has been in college now for about a month. There's a lot of adjustments going on. And I don't even know how she'd be able to handle this on her own if we weren't there to help her and get her back. And it's super easy to do when we can see her data on our phones. Right now. I'm helping Arden fight a high blood sugar while she does her homework. We've already had a couple of lows at inopportune times that had been headed off because we knew they were coming. How did we know Arden's wearing a Dexcom G six and I and my wife can see her data on our iPhones. Check it out. I think you'll be glad that you did

Melena 24:59
I'm not Not that bad. Technically, I think it was like 6.4 or something. So it wasn't bad, but like my time and range was 50 to 65%. Because I spent like the entire day going from the 40s to 250 and back.

Scott Benner 25:26
So you were one of those people who was tricking the system a little bit your, your time and range proves out that you're a one C might not be well earned, I guess, you know, like, or I don't know if well is the way to put it, but you might have been tricking the system a little bit by being low, so much, right. And then you bounce up. And so what was the first thing that you heard on the podcast that got you moving in the right direction?

Melena 25:53
Um, well, it's always kind of been like, I was not actually tricking the system because my doctor was one of the first doctors in like in our area, who looked more at Timon range versus HB one. See? So I kind of got a little bit of scolding at my appointments. I just like I was 17. I did not bother.

Scott Benner 26:22
You weren't listening when he was scolding, by the way also being scolded in German. Yes, yes. Which is it's, it's a harsher language. Does it feel scarier? Like, is there something that I could say to you in English? That would sound better that if it got said to you in German?

Melena 26:37
Um, I don't think so. But I mean, I'm just used to the language.

Scott Benner 26:44
Can we can we test it very quickly. I'll say I'll say something. And then you say it back to me. You say the same thing back to me. Let me think.

Melena 26:54
I'm supposed to say it in German. Yes. Yes. Yes. Yeah. Okay.

Scott Benner 26:57
You can do that. Right. You speak German? Yes, I do. Okay, all right. So hold on. Molina, I need you to try harder to keep your blood sugar in range.

Melena 27:10
Okay, let me think how I'm gonna translate that. Scott to massage my understanding. And I'm Bledsoe County, Arkansas. That's Ohio.

Scott Benner 27:22
Okay, so I will let the people listening decide which one sounded harsher. But I was trying to be a little harsh. So okay, so I'm trying to imagine you're 17 years old, getting the you know, the riot act read to you about your sixth floor. But are you looking at the sixth floor and thinking, but this six four is good. Like, why are you yelling at me? Or did you understand why the doctor wasn't thrilled with it?

Melena 27:46
Well, I didn't understand why it wasn't for that. Because I was like thinking, Well, of course, the numbers go up and down. But like, the average is okay, I'm, I'm coming out on top at the end of the day. So why are you yelling at me, I did not get at that point that the fluctuation in blood sugars was just as bad if not worse than high blood sugar is very prominently

Scott Benner 28:12
binding stability is very, very important. That's why in the beginning, even finding stability at a higher number is valuable. And then you can start to, you know, kind of crank it down and bring it down a little bit at a time until you're till you're comfortable. So he's telling you, it's not quite right, you don't understand why it's not quite right, quite right. You find my podcast and you start imagining that it's possible. What did you attack first?

Melena 28:42
Um, well, the thing was, I was trying to lose weight at the time, because I had gained a little bit moving away from home. I think in the US, you call it like the freshman 15 or something, that's what they call it. And since I had a lot of lows during the day, I also kept eating extra calories. So I was trying to keep from crashing basically, and I think it's like, I don't know when you start saying it like in the podcast, but there's always this notion of if you never go high, you never go low. Right. So I was just basically starting to try to not get high and of course it ended since I wasn't pen at the time. So basically ended with starting to Pre-Bolus actually because I had been taught Pre-Bolus thing but I never actually use it because waiting 20 minutes for your meal. It's just it's it's a lot of time spent hungry. A lot of times so I can I kind of started implementing that and I had less highs, I had less lows, I started adjusting my Basal, then I kind of I had a point where I found out that with the I was injecting leavener. At the time, I was always going low in the middle of the night. So I tried to lower my dose, I couldn't quite adjust it. So I also made the decision to switch to a pump right around that time, okay. And as soon as I got on a pump with varying Basal rates, and Pre-Bolus ng being even easier, since it was only the push of a button, things started to actually get way more stable. And I started to notice that I had before having stable patches I had felt like, because all those hypose During the day, they were ruining my mood and my grades, I just hadn't realized it. And once I got rid of those and of all the ups and downs, I started actually feeling better. My mental health got better. So I just stuck to it.

Scott Benner 31:18
That's excellent. I'm really happy for you. I'm also very impressed that you figured it out at a younger age while you were in college, too. Is that something not uncommon for you? Are you a particularly mature person for your age?

Melena 31:33
Um, I guess I've kind of been I'm the youngest of five children.

Scott Benner 31:39
Oh, they stopped taking care of you years ago. It's been seven?

Melena 31:46
No, well, I am all my siblings are way older than me. So I was I was kind of like the last one left at home. And my parents were both working full time. So I was kind of on my own a lot, which I think makes you a bit more mature. And I mean, I moved out at 17, which is I don't know if that's common in the US. It's not quite common around here.

Scott Benner 32:14
To go to school, did you leave to go to school? Yes, yeah, that's about the age when it happens here. 17 or 18 When you're done with high school. But usually those kids then go to college and make stupid dumb decisions for two and a half years until the middle of their junior year. And then they look up and they're like, What am I doing? And then maybe they pull it together, you know, when they're 21 or so a little bit or begin to pull it together a little bit. But you made like big? You made big changes to your health care. And then you know, just what happened. It was It talked about it for another second again, I know you said you didn't feel well. How long did it take you to start feeling better? And how remarkable was the change.

Melena 32:59
Um, I think like as the first thing which made me feel better, were not going low at night. Because I I woke up in the middle of the night, I did not have like an real CGM. I had the Libra, which did not have alarm. So I basically I woke up from my low blood sugar I ate, then went back and went back to bed. So I had gotten, I don't know, I think the labor usually just read low, which was not quite accurate. So it must have been like the 50s or 40s. As I well I had that low blood sugar, I had interrupted sleep. Then I got up in the morning, I wish I was usually a bit higher than I should have been. Because as I said the Libra doesn't have alarms and i i woke up hungry in the middle of the night. Yeah. Um, and that's basically how I started my day. And also, like when you're in the library studying and you go low all the time. That's time you spent sitting there trying to read your books in which you basically don't learn anything because your brain can't process it. So that's just time off your day wasted.

Scott Benner 34:25
That's, that's, I think, a burden that people don't recognize right away, and then it has a way of compounding. And before you know it, you're lost. You know, a bad a bad episode turns into a bad morning turns into a bad day, bad week. And then before you know it, it seems normal. And then that's it. You're just you don't even know what's happening anymore. You just yeah, you're just lost in it.

Melena 34:53
Exactly. That's the thing that was my normal. I was not actively thinking about the fact that This was not okay. This was just regular wait to start my day regular way to go studying. I did not think about that this was an issue I could fix myself.

Scott Benner 35:15
I feel bad that everybody or for anybody that ends up feeling that way, like not only is this thing happening, but it's out of my control. That's and I think that it's a sentiment that gets passed around too. So you have to be careful when you're in the community, because you can find a number of people who are all stuck in the same moment. And then they start commiserating with each other. And then if you're watching from the outside, you can accept what they're saying, as the rule. And just oh, I guess this is what diabetes is going to be I'm gonna, I'm gonna get low in the middle the night I'm going to eat food and gain weight and feel badly. And that's what happened to me. And that's that, but I'm glad that you figured out that that didn't have to be the case. Did you share it with your parents? Did you like contact them? And you're like, Hey, I'm doing better? Or do you? Does that not even occur to you,

Melena 36:10
um, diabetes wasn't really a topic with my parents. By the time I moved out. Um, I, I mean, I just didn't really talk about my management. My the reports, which came back from my doctor were like, kind of okay, because as I said, the agencies were okay. And while I was moving out, my diabetes was not a topic that we really talked about. We basically, we hadn't talked about it since I was around 14, when I took up my own management. And I started talking to my parents about this when I was starting the process of getting pump. When I was saying, Hey, look at this, look at these numbers. I'm actually, I'm doing real good. I, maybe I've also kind of had a notion of, look how good I'm doing this. You never did as good as

Scott Benner 37:13
you think maybe they were. Maybe they were upset, knowing that they couldn't do it as well.

Melena 37:21
I don't know. I mean, I'm the one thing I have to say is, when I was a child, my dad tried to manage he gave everything. He just overshot the runway a little bit. And the results were in really good. So as a kid, I had like a onesies and eights around that. So my parents, I think, during my teen years, they always saw that I had like the sixth something. Everyone see, and they thought it was okay. It was bad. And also, I don't think I would have been responsive if they would have tried to talk about my management.

Scott Benner 38:06
Okay. Because why do you think?

Melena 38:11
Um, well, it's kind of been like, before I started managing on my own, like, as I said, all of my siblings are way older. So they used to babysit me. And to this day, they tell stories about how they were constantly getting called by my father. And he never said hello to them on the phone. The first thing he always said to them was, what's your blood sugar?

Scott Benner 38:42
Your dad was worried about you and that made your siblings feel like he didn't care about them?

Melena 38:47
Well, it made them kind of feel like I was the most cared about. I mean, I was also the small child. So that's just part of the issue. But it also kind of made me think that like, my diabetes was the thing about me with caring.

Scott Benner 39:10
I see, too, he didn't talk to you about anything other than that, either.

Melena 39:14
Yeah, gotcha. Not a lot. I mean, he was he was working full time. So basically, he called during the day and he did my nighttime blood sugar checks. That was the most time we spent together during the week. I understand.

Scott Benner 39:31
It's the Yeah, I mean, he probably had no time and the little bit of time he did have he was putting towards you trying to help you be healthy. And yes,

Melena 39:43
I mean, he had the best intentions just like um, I feel like in some parts, the child which actually had the diabetes fell a bit short.

Scott Benner 39:56
You felt you felt like you weren't pulling like doing what you should be doing? thing. What do you mean by that?

Melena 40:03
I mean, like, like my DF diabetes was the first issue on his mind. Every other thing concerning me came second or third, I see

Scott Benner 40:13
where your parents much older. By the time you were, like, how old are they now?

Melena 40:19
Um, my parents are in the mid 60s.

Scott Benner 40:23
Yeah. So my son is a year older than you. And I'm 50. And my wife's like, I don't know how old she was, like 48 or something. I should probably know, I could do the math, but it's not important. So your parents are 15 years older than I am? Yeah. I don't know if I'm young. Compared to my children's age, I think I am a little bit I can remember going to school events for my kid, and the other parents in the room always felt like five years older than me, maybe are a little more than that. But nobody felt 15 years older than me. So your parents just had one good night. 15 years later, huh?

Melena 41:02
Well, all I'm gonna say about this is my eldest sister is 26 years older than me.

Scott Benner 41:09
Oh, my gosh. Your mom get drunk at a wedding when she was like 45 or something like that you think something like that? Maybe?

Melena 41:21
I know the story of how I came to be just private. Leave it at that. Yeah. And alcohol was involved.

Scott Benner 41:34
There we go. I'm imagining a beer stein, and a dress that I've only ever seen on television. And then before you know it, you're over there with your diabetes. And your brothers and sisters are like, where did she even come from? They must have felt like they bought a dog like too late in life. Like, Why didn't mom and dad get this? Not that you you understand? You understand? Yeah. Okay, well, that doesn't sound like an easy way to grow up. But yet, you seem very upbeat and proactive. Why did this not make you sad and resentful?

Melena 42:09
Um, I mean, I think it did for a little while. So as I said, like, I started managing completely on my own at like age 1314. And I started like, I'm just calling it the juice box method around like 18. So in those years, between I, um, I was managing, as I said, but I was not talking about the topic. I wasn't talking about diabetes with my parents. As I said, I tried to think about my management as little as possible. So I barely even ever adjusted like my Basal doses, even though I was still growing. Um, so I think it kind of kind of made me not resentful towards like my parents. It made me resentful towards the disease. So yeah, I was, I was just managing, I wasn't thinking about it. And I sometimes find myself now that I know all the things I know now, looking back at those times, and thinking like, how did I even survive this?

Scott Benner 43:36
Vicki? Got lucky a couple of times?

Melena 43:40
I don't know. I think so. Yeah, um, I had, like, issues with eating, I would call it like something going in the direction of like binge eating, where I would just put in 30 units, open the kitchen cupboard and eat whatever I could find. And so that 30 units was based on nothing. And I think all of those things that could have gone wrong,

Scott Benner 44:13
and Okay. Could have just not been hungry at some point and stopped eating and had way too much insulin or just overshot. It definitely talked about that a little bit. Is that a? Is that a feeling of? I don't want to think about having diabetes, what I eat makes me think about diabetes. So I will throw in so much insulin that I can eat with abandon, and then I'll get to pretend for a little while I don't have it, or is that is that not what was happening?

Melena 44:45
Well, I think what you're implying, that's way too conscious. I wasn't thinking about the diabetes at all. thing was, I of course, with with my parents always trying to manage me i I also got into fights with them regarding like, eating candy and stuff when I was younger I think every diabetic child does at some point. And so when I was like, all the I could buy my own food, I had complete control of what I ate. And I just wanted to indulge, so the diabetes was like, not the important part about it was actually the food. Like, I just wanted to have all these these things, and whatever happened to the disease didn't matter at that point.

Scott Benner 45:38
Is there any other autoimmune issues with you or your anyone in your family?

Melena 45:44
Um, with me currently, no. My family's got issues with hypothyroidism.

Scott Benner 45:52
Oh, and you've gotten away from it somehow.

Melena 45:55
I've gotten away from it so far. Yeah. Interesting. Good

Scott Benner 45:58
for you. Brothers and sisters, moms and dads. It spread everywhere.

Melena 46:04
I own it's coming from my mom's side kind of guessing. Gotcha. Yeah, so neither of my parents actually do but it's been on my mom's side of the family. And one of my sisters and one of our brothers both have it. So. Yeah, gotcha. Well, we're guessing it's, it's one side.

Scott Benner 46:24
I see. Okay. You did you decide at some point. You kept saying pump, but I don't know, what pumps are available in Germany?

Melena 46:35
Um, well, I mean, most of the pumps which are available in the US are and actually some more because some European fact manufacturers are. All around the pump I got when I was getting on a pump was actually tubeless. Um, it was it wasn't the Omnipod

Scott Benner 46:58
sorry. No, you have to be sorry with it like gipsa med or something like that? Or is that what it's called?

Melena 47:05
The calm company was called metronome. I think it still exists, but the pump has been pulled from the market.

Scott Benner 47:17
Hmm. I'm trying to find it. I'm not having a lot of luck. Let's see.

Melena 47:29
I think it's spelled m e di, T. Are you?

Scott Benner 47:36
Alright, I might have it. Oh, was it like green and white?

Melena 47:45
Yes, exactly. Two parts.

Scott Benner 47:48
Interesting. Look at that. How long did you have that for?

Melena 47:52
Only a year.

Scott Benner 47:55
The company disappeared

Melena 47:57
or, you know, the company had a, they lost a legal battle here in Germany and they had to pull it from the German market. So I had to get another pump and also, but by the time I had been on a pump for a year, I was trying to get into looping so I was kind of happy. I got to choose a new pump.

Scott Benner 48:23
Did you loop with Omni pod or with Medtronic? Neither. Which one did you use?

Melena 48:30
I'm using a Donna RS

Scott Benner 48:33
look at you like you live on a different planet spelling for me.

Melena 48:39
As Dana like the first name, okay. And the letters are S

Scott Benner 48:49
Oh, it looks a lot like oh, I say. Yeah. Oh, it's available like in North Korea. Or excuse me, excuse me. I'm misreading. It's a Korean pump. It's a Korean Tom Victorian pump. Yeah. Oh, look at that. It's cool. I've never seen that one before. Dana. And so you're using that to loop with? Exactly. Are you using the same loop algorithm I'm using are using a different one.

Melena 49:15
I'm using the Android version.

Scott Benner 49:19
Android version. Okay. Yeah. What's your experience?

Melena 49:25
Um, I think loop is kind of fascinating. I think I wrote it in my email. I'm on the faster version of human clock. So I'm Jeff insulin. And I'm basically I'm using loop without manually giving bonuses or entering carbs as long as the total amount of carbs is below 50.

Scott Benner 49:59
Say that Again, for me, I'm sorry.

Melena 50:03
I'm not manually Bolus saying or entering carbs, as long as like the total amount of carbs in the meal is below 50.

Scott Benner 50:11
So you just are you telling it you're eating or it just it sees and handles it.

Melena 50:17
I'm telling it to a lowered target blood sugar to 72 for, I think two hours usually. And, well, I don't actually know what the algorithm per se us, but there is some kind of programming going on. So the corrections get stronger. And it usually catches up to all of the carbs.

Scott Benner 50:44
That's kind of brilliant. That's a different way to manipulate it, who taught you that? I

Melena 50:49
mean, the internet, the internet. Basically, there are a lot of like people working on Android loop in Germany. And of course, there's a Facebook group and then website where they talk about their new ideas. And when language F became available, in Germany, lots of people were like thinking, well, this insulin is so fast, maybe if we're not eating the most sugary stuff, we can get this to a like, closed, closed mode loop. And they started trying, and it was just kind of, I don't know, it was kind of following as people were trying, like to eat different meals and seeing what the original algorithm did that with it with a fast acting, ultra fast acting insulin inside. And once enough people I had posted the results, and they were looking good that just, I don't know, I kind of started trying it. And I think like the limit of 50 carbs kind of varies between people. So I say I need to do a manual Bolus, if I'm exceeding 50 carbs. From some people, it's more for some people, it's less Gotcha. It also does, of course, not work with every kind of food, like the time it takes for a Dexcom to measure the interstitial fluid would be way too long for something like Syrah.

Scott Benner 52:31
Okay, what I'm seeing here about that insulin, I was poking around on the internet a little bit, it seems like if you're a person who already Pre-Bolus is with a different insulin, you're not going to see a big difference with this. But that it might eliminate your need for such a long Pre-Bolus. But you're but you're saying you see it right around 50 carbs, if you go over 50 carbs, it's not fast enough to catch up. Even though you're setting that lower target.

Melena 53:01
It's not fast now to catch up. Just using loop. Yeah,

Scott Benner 53:05
gotcha. Right. But but still just setting the target lower is kind of brilliant. It's almost the it's the algorithm version of setting a Temp Basal increase overtop of a meal. Like you're adding you're adding extra insulin or you're adding extra emphasis, you're telling the loop, like be more aggressive, I don't want to be I don't know what what is your usual target for loop?

Melena 53:29
I think it's like 90 to 85.

Scott Benner 53:33
And then instead you go to eat, you just tell it tried to make me 72 How long before you eat? How long before you eat, you have to tell it that.

Melena 53:43
Um, I usually put in the target like half an hour before you do

Scott Benner 53:48
your Pre-Bolus thing with the target instead of Pre-Bolus thing with insulin, and it's taking care of it's taking care of putting in the insulin because even if you're like, like, if you're 90 At that moment, it's going to immediately get more aggressive trying to get you to 72.

Melena 54:01
Exactly, but the difference between like setting the target and doing a Pre-Bolus is if I don't manage to eat 30 minutes later, for example, in a restaurant or something. Nothing's going to happen below 70

Scott Benner 54:18
It's still only shooting for 70. Exactly. Yeah, that makes sense. I saw today Artem was at school today. I have no idea what happened. But her blood sugar was just chugging along in the 80s. It had been like that for like, eight hours. And she didn't need anything. But I don't know what happened. But she suddenly went to an arrow straight up. And I think she got to like 130 was still an up arrow. And I looked and the algorithm was like, was like hitting her with insulin it was making like so I use the version of loop that allows bolusing and like it was given it was Bolus near like a unit and a half at a time that it wait a little longer and gave her more. And I'm actually looking at it now because I never investigated it. But you know, she was while she was 74. And then suddenly 8297 115 129, like over a half an hour, but she never got above 134 and 850. An hour later, she was 108. And an hour and a half later, she was 85. It just is. I don't know what happened to her. I don't know why that happened. But just imagine if that happened on a regular pump, or with MDI, like, who knows where her blood sugar would have stopped? Probably, I'm gonna guess like, 240 Maybe. So probably these algorithms are crazy. Cool. I love him. Really, really.

Melena 55:57
Now imagine the reason her blood sugar started to climb was was something she'd eaten. And Luke just basically handled that on its own. That's kind of what I'm going with. Yeah,

Scott Benner 56:08
no, I've seen I've seen like us, like, Forget insulin, you know, completely. And it'll still hold her. You know, unless it's something crazy, like you said, like cereal or something, bananas, but I meant bananas like crazy, not bananas, like a banana is something like that. Still, it can stop or before, like 200, and at least gives you time to react to it and go, Oh, God, we didn't put it inside and fix it. You know? It's really cool. Where did you hear about looping from?

Melena 56:41
Um, so I'm actually I think the first kind of contact I had with Luke was on the podcast when you started about on starting moving, um, and I just kind of thought like, first I thought it was like an iOS thing. And I'm an Android user. I'm not using any Apple device besides airports.

Scott Benner 57:09
You're very upset at Apple, we get talking about that later. That's okay.

Melena 57:13
And then I kind of thought, well, it must be in mostly American thing, because I saw all of these people using like, the old pertronic pumps. And then I kind of started looking around on like Facebook, for German groups, and what they were saying. And I found like the German loop groups and the instruct instructions to build loop. They're also available in German. So I knew there must be people around here doing that. And so yeah, I kind of got into that through mostly Facebook.

Scott Benner 57:54
It's amazing that Facebook can be valuable. Yeah, actually. That is really, it's really terrific. Yeah, and it made me happy because I think there are people inside of like, the original loop core of people who I don't think they like me very much. And they, I got your loop into Germany. So you couldn't do that. So there you go. That's all I just wanted to say that real quick. I, I don't know what the problem is those people who have problems, but I love that thing. And I'm happy to like sing its praises. And I don't know what their issue is. I think maybe I I might have made it pretty popular by being on the podcast. And who knows, I'd be I'd be guessing. Bullying if I if I had to guess and I don't want to. I don't want to guess I could be completely wrong. I don't like to pretend I know how people feel. I just hear stories. And they hurt my feelings. That's all. That's all. You've hurt my feeling is I'm gonna lash out if we can consider this that. So how long have you been doing that now?

Melena 59:02
Um, I think I started a little bit over a year ago with loop like in general. And not really manually Bolus saying like in February or March of this year.

Scott Benner 59:21
I'm gonna try that by the way. I seriously am like the next time I can try something I'd be like, let's set a temporary target right and see how that goes. That's really cool. I love how much autonomy the The program gives you, you know how you're really able to make, I mean, all these all the other ones from companies just, I'm going to imagine are not going to give you that much freedom to be changing settings like that. But it's cool. It gives you a different way to think about the insulin which I think ends up being the most important thing is that because you could accomplish that with a regular pump if you wanted to. Yeah, you could do a Temp Basal increase a half an hour before you eat Make it significant enough that it would use enough insulin to cover those carbs. Yeah, you can't, there's no reason why you couldn't do that. And like you said, as long as we're not too harsh or too much in quantity, it should be able to stay ahead of it. I'm thinking it through while while you're talking.

Melena 1:00:17
Yeah. But there's also like, there's not much thought process going into it. Like if I, if I had to set a manual basil, I have to set that up, then it probably would not be enough to cover a meal. So I'd have to build us. And with using loop to cover meals is just one temporary target set, like around 30 minutes, doesn't matter if it's 20 Doesn't matter if it's 40. And you just start eating and in the best and, honestly, in the regular case, for me, I don't have to think about a meal another time.

Scott Benner 1:00:58
Well, what do you what kind of eating Do you normally do? Like, what are you eating?

Melena 1:01:04
Um, I, I'd say I eat quite quite regular food. So I do have some of my high carb meals. But as I said, I'm putting in a little bit of a bonus for those because like, most Italian food or anything like that won't be covered entirely. And, well, I try to stay around like those 40 grams of carbs at a meal. If I'm like working or doing something where I don't want to spend time looking at my phone and looking at the numbers I'm trying to keep with like the 50 gram goal. But overall, I'd say I eat a bread pretty regular diet.

Scott Benner 1:01:52
Okay. vegetables, bread, meat, cheese, except Yes,

Melena 1:01:56
yes. Yes.

Scott Benner 1:02:00
Excellent. That's exciting. That must be incredibly exciting for you. Honestly, right, like, after how everything's been for so many years, and how much effort you had to put into it. And when you were guessing, and, and going through those, those other issues? Is that, um, I let me ask the question a different way, if someone came along and took it from you, what would it mean, if a Health Authority stop loop from being available or something like that? Like, what would you? How would that impact you?

Melena 1:02:30
Um, overall, I don't think it would like impact, my blood sugar's a lot, maybe would even make them a bit better. Because if I were to manage entirely manually, again, most of those small food spikes which need to happen in order for you to react would not happen. But overall, I think there would be a period spanning some months of real intense, thinking about things once again, and trying to figure out and maybe I would have a bit less, more bit less variety in the kind of food I ate, just because trying to keep things easier. And I think if someone stopped my loop right now, I would manage but it diabetes would become a way bigger part of my daily life once more. And yeah, just I don't want to think about people stuffing.

Scott Benner 1:03:39
I'm happy that you share that though. Because that just I don't know, I'm interested in, in what what effects it would have. So you're saying you know, went off about it, you'd be able to pull it together and manage your blood sugars, but in it would take time away from your life, it would change your relationship with food. And those things are not positive. Right? Exactly. Yeah. Okay. I could

Melena 1:04:06
live without it. I just wouldn't want to.

Scott Benner 1:04:09
I understand. Now I worry about sometimes I worry that, you know, one day the FDA is just gonna be like, No, can't do that. And they wouldn't be able to. I don't see how they could stop the algorithm from being available right online. So then that would mean they'd have to pressure the hardware manufacturers do not I mean, if they were looking for a way to put a stop to it, they couldn't stop the sharing of the algorithm. They'd have to go after the companies. I don't know how they would do that. Or if they would, saying that's what I want.

Melena 1:04:44
I'm kind of thinking as you say that, like, in the US, you can only use like, old Omni pots and old latronnik pumps to do right.

Scott Benner 1:04:57
Yeah, I think so. Yeah, the Omni pod they arrows, pods work. And yeah, there's the Medtronic i. And then there's another version of like an algorithm that I'm not as familiar with. I'm not sure what worked for them. But I think it's Medtronic, for sure. And there's also not many pumps left here. There's metrics.

Melena 1:05:15
That's what I was thinking. So like, Isn't kind of the hardware running out.

Scott Benner 1:05:22
Medtronic on the pod, and then there's tandem, but you can't loop with tandem. So yeah, I just I don't know, like I'm trying to imagine. I mean, it's being, as far as I can tell, so far, nobody's making a problem about it. But it's just it's one of the things that always sticks in the back of my head, like, we've, we're using this thing. And you know, it's tenuous, right, it's being managed by people online, sometimes they make additions and subtractions to it, and they, you know, they fix it, or whatever that means. And then there's, you know, the companies that make products, and this isn't how they mean for them to be used. And so far, nothing has come of that. But that's the part I worry about. Anyway, I like worrying about things. That's one of the that's one of the things that pops into my head. But I love it, I hope nobody touches it, they should all just leave it the hell alone. Let you be

Melena 1:06:17
Sorry, I interrupted you.

Scott Benner 1:06:19
I want them to let you be happy.

Melena 1:06:23
Well, um, I think I'm gonna stay happy cuz the company might pump us from, um, they released a new model this year, which is has already been integrated into Android loop. So I should be safe. Like for the next six or six to seven years, hardware wise.

Scott Benner 1:06:46
I can remember at the beginning of all this, for people were scavenging old pumps that were able to be looped, and they were buying them online from people and people were finding them in drawers and giving them away and stuff. And I don't want it to come back to that. I think this is a pretty, pretty fair balance. So and yeah, and then you've got your aquarium pump. So you're all set?

Melena 1:07:12
Well, I sometimes find myself thinking whenever I see one of those posts, like, Hey, I found an old Medtronic in a drawer from my cousin or something. Like how many of these old Medtronic pumps have been around before they got pulled? Yeah. seems to never end.

Scott Benner 1:07:32
I know, there's always somebody that finds one somewhere. So pretty fascinating. I think. If you came here, you know, you'd find find some on the pods and boxes in a couple of different places. So it's hilarious. Is there anything that we haven't talked about that you want to talk about?

Melena 1:07:51
Um, I don't think so. Yeah, I think I'm good.

Scott Benner 1:07:58
Did you have a good time? Yeah, I did. Um, is it not strange for you that I'm like, more than twice as old as you are? That doesn't matter to you?

Melena 1:08:09
No, actually, like the strangest feeling is like hearing your talk and hearing your voice and kind of getting it into my head that I'm supposed to respond. Because I'm so used to hearing your talk. And I'm like, okay, he's talking. What? Why is that why now is oh, I shouldn't be talking now.

Scott Benner 1:08:30
I think as long as you don't start answering your headphones, when I'm not really with you, I think that'll be fine. I do I do understand that I understand it, because I've heard it from a number of people that they'll say like, I'll, we'll get done. And I'll be like, how was that for you? And they're like, it was very strange to hear you talking and that I had to respond. And I was like, okay, so I try to make people comfortable. You seem like you're comfortable. Are you up? I am very cool,

Melena 1:08:55
though. I mean, I was kind of worried. This is my second language after all. Um, but I think I've expressed myself quite well. So I didn't articulate myself quite quite well.

Scott Benner 1:09:10
I thought you did. And I didn't hear you. Like, there was one time where you said like, I have to think about how I want to say this. But other than that, like, I didn't think you had any thought to translation issues. I thought you did. Good. Thank you. I've spoken to a lot of people who this isn't their English isn't their first language. And that's the, that's what I've learned mostly is that they spend time, like, we don't always have the same words. And so you have to rephrase things or say them differently, so that they mean something similar. And you can hear people get caught up once in a while trying to find it. And I don't know what's happening this week. But I've recorded with a guy yesterday I recorded with a Frenchman. And today you I think I'm making my way through Europe this week.

Melena 1:09:55
So well. Maybe someone from the Netherlands be next,

Scott Benner 1:10:00
it would be nice if people would reach out. I'll tell you, let me tell you where the podcast is the most popular like top 10. us first, then Canada, then Australia, and Australia and Canada sometimes go back and forth. Like sometimes the downloads in Australia will be Canada, vice versa. Then it's United Kingdom, Germany, New Zealand, Ireland, Sweden, Belgium and Norway. And I'm always interested that it's never like, Isn't Norway, one of the places where like every other person has type one diabetes? Is that what I'm thinking of Hold on a second, Norway? Type One, there's a place. Oh, there's a place over there. Because I don't really understand the map that well, where like, type one diabetes is just in abundance. And yet those people haven't found the podcast yet. I might have to go over there and do a tour, I'm going to find out exactly where that is, and stand in the center of town and talk about Basal insulin until people start paying attention or something like that.

Melena 1:11:00
Doing some on site advertising.

Scott Benner 1:11:02
Yeah, right, exactly. I'll get out ahead of it. Hey, when are you done College? Now? How much longer do

Melena 1:11:07
you have? Um, I'll be done in the spring?

Scott Benner 1:11:11
Oh, that's excellent. And do you have a job to jump into? Or is that what you're trying to figure out now?

Melena 1:11:16
Um, that's kind of what I'm trying to figure out. Now. If I'm like, I'll be done with my bachelor's in spring. And currently, I'm figuring out whether I want to work afterwards or if I'm going to start my masters.

Scott Benner 1:11:32
Okay. All right. Are you leaning in one way or the other?

Melena 1:11:35
I'm currently I'm thinking about keeping, keeping on studying. So doing my masters.

Scott Benner 1:11:42
Gotcha. Well, you're gonna figure out how people think and help them. That's your goal.

Melena 1:11:47
Well, kind of Yeah.

Scott Benner 1:11:49
Yeah. You're not gonna help anybody? Nobody can?

Melena 1:11:54
Probably not.

Scott Benner 1:11:57
But I guess the endeavor and the value is the trying, right, like trying to trying to get people to see things that they don't see.

Melena 1:12:06
Yeah, I think I think the one thing you can help people with is making them aware of the way they think and where there might be mistakes. I mean, that's kind of what you're doing. Yeah, I think so. Yeah. You're talking to people about how they think about their diabetes management and then trying to find their mistakes and how they think about it, why their results don't match with their effort they put in?

Scott Benner 1:12:34
Molina, you really understand me on a different level? Don't you? Go ahead. You do, don't you? You see what I'm doing, don't you? I kind of do you think everybody knows?

Melena 1:12:49
I think most people would listen to

Scott Benner 1:12:52
I'm not trying to hide it. I just yeah, I'm I'm, I'm definitely doing that. I am. I am. Absolutely. I think that it's unfair to put people into a situation like this, and then ask them to not only figure out the situation, but figure out the way that their brain works and overcome the things that are stopping them that you can't, I mean, by the time we fix that, it'll be too late, you know, so I put things out there in a way where that becomes, I don't know how I'm gonna put it, where the information about handling your diabetes becomes the thing you're willing to vote for, you know what I mean? So you hear it, and you hear people's real honest lives with it, you can believe that it works. It gets mirrored through my personal experiences, that should be enough to get somebody to be interested, then they can kind of put it together in ways that worked for them, give it a shot, see it work, believing it, keep going that eventually that turns into like you said, you know, not much effort to keep blood sugar's where you want. And then that's it, then I'm done with you. And you can keep listening for the stories. And, and then we'll get somebody new again. But I didn't know you just sound like you're inside of my head while you're talking. You're freaking me out.

Melena 1:14:17
Um, well, I don't know, I wasn't used to getting a compliment. I mean, you were basically complimenting yourself, but complimented me.

Scott Benner 1:14:29
You have the whole thing, right? This is amazing. You really do get me. No, you just, I say it all the time in a different way. Like you agree with me. So I like you.

Melena 1:14:46
Well, I mean, as I've said previously, people don't even need to like you to understand your ideas

Scott Benner 1:14:54
matter. And there are some people like that, by the way, and I've received their emails and it's fine with me. Don't worry. I I just got I just got one recently again. Alright, we'll end with this. Let me find it for you hold on a second crack. crack me up, please, I don't want a bunch of these though you'll kill me inside. But this one, if I get it once in a while it's okay. Let's see if I can find it. Looking at reviews,

Melena 1:15:19
but I remember like you talking about this while I was still kind of like hate listening, that there's an episode where you say like, Oh, I get those people who absolutely hate me once in a while they send the emails that will say like, Well, no, I'm not sending one if I'm just one of many.

Scott Benner 1:15:40
hosts can talk a lot about himself versus interviewing guests, but can have great content. I love that one. There's one back a couple of years ago that basically just says I don't like that guy at all. But it's a really good podcast and my blood sugar's are better. And that I'm laughing about it. But not everybody can like me. But I'm happy that the podcast is valuable enough that even if I'm not somebody who you would choose to listen to for your entertainment, it's still worth listening to. Like, I think that's great. All right, because I can't, I mean, try to imagine if I tried to be somebody who everyone would like, that would be irritating because it wouldn't be real. I would just basically say nothing, have no opinions, and then blurt out stuff about diabetes, and you wouldn't listen to that. So yeah, I know. Everybody doesn't like me. It's okay. I'm okay with it. Well, I just don't want everybody

Melena 1:16:41
know, like you. I've listened to like, not all of the episodes, but like, 500.

Scott Benner 1:16:47
You've listened to like, 500. Thank you. Yeah.

Melena 1:16:50
And I mean, I'm not talking to you directly. So

Scott Benner 1:16:54
I really do. Yeah, okay. So tell people. You love me now. Right? Well, let's put it this on the fly. Let's put a million let's be more fair, you, me and your data in a robot, the robot starts to sink. We gotta throw someone off. So that the robot doesn't think who leaves me your dad. You but I love the pause. You were always gonna say me, but I love how long you paused. I appreciate that very much. Thank you. All right.

Melena 1:17:28
That's an experienced sailor. I'd like to have on a boat.

Scott Benner 1:17:34
Plus, you could just let them listen to the podcast if you need his help. So I've done it enough now. I mean, it's all here. Right? Molina like Pete. People. You listen. It gets easier, right? It does. Yeah. Oh, that's sweet. I appreciate it. And I appreciate you understanding me and laughing along with me too. I really, I had a great time talking to you. And I'm really pleased that you came on I thank you for taking the time. I know it's later in the evening where you are and you must be hungry and trying to get your evening going. So thank you very much. That's okay. Thank you for having me on. A huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juice box. I'm also going to thank Dexcom and remind you to check out the Dexcom g six@dexcom.com. Forward slash juice box. And last but not least, Molina for coming on and hate sharing her story. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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#769 Heather's Kin

Heather has type 1 diabetes.

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

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends, and welcome to episode 769 of the Juicebox Podcast.

Today's episode features Heather who has type one diabetes as does everyone else she knows pretty much at least everyone she's related to well, not everyone, but a lot of people. You'll see. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you are a person living with type one diabetes, who is a US resident, or you are a person who is the caregiver of someone living with type one diabetes, also US resident, go to T one D exchange.org. Forward slash juice box and complete the survey. When you do you'll be helping yourself you'll be helping me and people with type one diabetes, T one D exchange.org. Forward slash juice box. You know the answers to every question they're going to ask their very basic questions about your health. Specifically about type one diabetes, you'll be able to answer them with no trouble takes fewer than 10 minutes it's completely HIPAA compliant and absolutely anonymous. T one D exchange.org. Forward slash juicebox.

Today's episode of The Juicebox Podcast is brought to you by us med get your diabetes supplies from us med start now by calling 888-721-1514 or by going to us med.com Ford slash juicebox. And us med has a new product update that I'm going to tell you more about during the ad but I'm just gonna give you a little taste right now. FreeStyle Libre three at US med you can get it now. This episode is also sponsored by the Contour Next One blood glucose meter. Yes, indeed, you can use the same blood glucose meter is ardent and get the same great results at contour next one.com forward slash juice box.

Heather 2:14
My name is Heather and I live in northern suburbs of Chicago. And I am a type one myself, my brother is type one and two of my three children are type one.

Scott Benner 2:24
See already. Now we know why you're here. Do you think at this point, Heather, do you think people listen to the podcast and think like everybody who has type one diabetes has like so many other people in their family? Or do they realize that just once in a while people like you reach out? I always wonder that.

Heather 2:41
You know what? I don't know, because I haven't run into it. I mean, I know several singleton type ones, but I have I've yet to run into multiple family members like personally, like I see them on, you know, podcasts or hear my podcasts or I see them on, like Facebook page things. But personally, I've never run into anybody and our hours is a little bit different because my brother was diagnosed when he was seven, and he's now 50. And then we thought we were home free because nobody else had it. And then all of a sudden my son years later was diagnosed. Then I was diagnosed that my daughter was diagnosed so

Unknown Speaker 3:21
Oh, no. Bizarre. So the brother 43 years ago. Yeah, he was diagnosed. I don't want to show off, but

Scott Benner 3:30
I don't know. 40 years ago. What are we talking about here? This ad? I don't know. I don't want to. I'm embarrassing myself. I feel like it was the late 70s.

Unknown Speaker 3:41
Yes. Was it? Yes, it was.

Scott Benner 3:45
Yeah, that was amazing. Okay, now, your son, who is how old now?

Heather 3:51
He is now. 24. He

Unknown Speaker 3:52
was diagnosed at 1410 years ago. 10 years ago. 2012. Up? Hmm, that was

Heather 4:01
I was I was I was diagnosed eight years ago at age 40. Oh, okay. And I was actually misdiagnosed as type two. And then I had a terrible doctor. And then I started, they put me on insulin. And it wasn't working. And then I sort of did my own thing because I was you know, I knew how to take I didn't do anything drastic, but I was like, I'm gonna take a little more insulin. I'm gonna do this. Oh, I apologize.

Scott Benner 4:36
Wait, wait. I have a question though. Like, right off the bat. Your brother's had diabetes for I mean, listen to eight years ago, your brother's had diabetes for almost 40 years, right? And then or 35, whatever. It doesn't matter how long time is when my point and then your son gets type one diabetes? How did they think you have type two?

Heather 4:56
Well, because I had a terrible doctor. I tried to tell him I'm like look at Send my family. And he, I guess I had I have lost weight since then. So I guess they looked at my body weight and it wasn't like gigantic, I was probably 175 for I mean, I could have lost the plot some weight. You know, I wasn't obese by any means. But I think they just looked, I don't know, this doctor was terrible. And so they put me on Metformin. First I didn't work, then they put me on insulin. That sort of work, but not really, I still had really high sugars. And then I sort of started doing my own thing. And then all of a sudden, I was the same ratios as my son, and I'm like, time to get a new doctor. And I did and they did all the tests. And sure enough, So lo and behold,

Scott Benner 5:36
the first doctor wouldn't do the testing like C peptide, stuff like that. antibody testing,

Heather 5:43
he, I guess he never did. And I didn't really know what to ask for to tell you the truth. Because, you know, when my son was diagnosed, it was so cut and dry that I didn't know about all the blood tests that needed to be done. You know, he was definitely type one. I mean, he was a dk egg.

Scott Benner 5:56
How long did this go for you? Well,

Heather 6:01
I think it was like a year and a half. Really? Okay. Yeah, I think I mean, I had sugars that were like two and 300. I was pretty much always that. I'm surprised I don't have any, like lasting, you know, damage of any sort. I think it was just hanging on. I think I was taking enough insulin and enough Metformin, and maybe I was still a little bit honeymooning to just keep myself afloat.

Scott Benner 6:26
Did you lose a lot of weight during that time?

Heather 6:29
I didn't, then that weird. I wished I did. I lost a little bit, but not a ton. I lost weight after the fact. After you got after I got an insulin while I was exercising more, I mean, I was working at it. But yeah, it was just was a very bizarre situation. And, you know, I talked to my doctor now who I love. And she's like, and I remember getting her and I told her without being super mean. I'm like, you know, this doctor who is in her office? And she's like, Yeah, he's really good if you have type two, but he really doesn't know about type one. So I thought, Well, that makes sense. So

Scott Benner 7:05
you weren't seeing? You weren't seeing an endocrinologist with the first doctor?

Heather 7:10
The first doctor was an endocrinologist. Yes. But he but he, according to this second doctor that I got, after I did some research because with our, or I don't know, if it's insurance, I think it's just the hospital. You can only switch once. I think you could probably find it. But when I was looking for a new doctor, they're like, make sure you get the one you want. Because you can only switch one time within I don't know how many years. So I did some research. And I found a really good one. But yes, he was an endocrinologist. But he was just one that I because I was in the hospital for something else. I had a really bad infection. And I had some high sugars in the hospital. And they're like, Oh, this is normal, blah, blah, blah, here, test your blood sugar once a week. So that's, that's how it started. And I started doing that. And I'm like, wow, this is really high. I don't think I'm supposed to be this way. And then when I called my primary care, they're like, Here, go see this doctor. And so I got sort of thrown with this one original doctor who didn't, excuse me didn't know what he was doing. For me personally. Maybe he was wonderful with other things, but not in my case

Scott Benner 8:08
in Chicago to like, I see. I feel like that would be how you think you could find a decent doctor. So yeah, he was

Heather 8:15
also he's quite elderly. I mean, I didn't know. You know, I just thought you need anybody. I guess I was more concerned about my son. You know, I'm always more concerned about other people than myself. So I think I was just like, Okay, I'll just do what they say. But I'm busy with everybody else making sure they're okay.

Scott Benner 8:31
And by the at that point, your son basically had it for six years already. Right? Yeah.

Heather 8:36
So I mean, I wasn't really taking care of him anymore. I, I still have a little bit of a power power over diabetes. Like I like to control. I try and control every part of it. But he had kind of told me Skedaddle mom leave me alone at that point, that just just in general taken care of everybody else. And I thought I was taking care of myself by going to an endocrinologist. But you know, I wasn't taking care of myself, because I wasn't really advocating it first for myself, because I didn't really know any better.

Scott Benner 9:06
Okay, did you have any of those feelings? Like, I'm not doing a good job managing my type two diabetes feelings?

Heather 9:13
Oh, yeah. I mean, because when my son was diagnosed, I mean, he was I think he's 14 Yeah, 14 when he was diagnosed, so he pretty much took over right away, you know, he's like, I'm fine. And of course, being around my brother, you know, I was devastated. But my son's like, it's fine. Because he saw it, you know, uncle, his uncle was totally fine and, you know, lived a good life and, but I still had some control issues over it. So when I had to deal with myself, my sugars were high and I couldn't get them under control. I was like, What is going on? And I did so much research and so much this and that's when finally they put me on insulin. And that's when I started doing my own thing. You know, they, I was on Lantis first and that didn't work. And then they put me on human log with Volantis and I think I was on a very short a small dose. I can't really I remember but then I started opening it little by little. And then all of a sudden, like I said, I was one to 10 just like my son. Yes. Like, look at that. Now my blood sugars are good.

Scott Benner 10:10
So I have a little bit of insight from your note. But, you know, to go back to your brother and I don't want to talk about somebody who's not here too much, but I think there's a lot of context here. He's diagnosed a very long time ago, you know, obviously, managing and regular an MPH, but he never stopped doing that. Is that right?

Heather 10:28
Never stopped taking insulin No, never stopped

Scott Benner 10:30
a management system that was just regular an MPH and so he didn't modernize his insulin or did he eventually?

Heather 10:36
No, he I think he has I think he's on human log and something else. No, but he still only takes, but he still only takes a shot in the morning and a shot at night and pokes his finger. He has no technology, he has no desire. He doesn't even have pens. He uses the actual syringes and the vial.

Scott Benner 10:53
But I'm thinking, is that why diabetes looked kind of? I don't want to say easy, but I guess not very encumbering to you because he his interactions with it weren't really very frequent in front of people, I would imagine.

Heather 11:07
Maybe, maybe I but I think they just saw that. You know, he still had a great job. He still traveled all the time with his job, you know, he still had a full life. So nobody saw it as Hey, Oh, God can't do this. Or he can't do that. You know, we never saw any of that. And that's

Scott Benner 11:26
no one's diabetes. Yeah, no one's even aware of his health. They're just aware of like, he looks like he's doing the things you expect an adult to be doing.

Heather 11:33
Right. And everybody knew that he had diabetes, but and, you know, we knew that he would go into the bathroom before dinner and take a shot, you know, our family is very open, we just lift up our shirt and, you know, poker stomach or, you know, we two of us have pumps my daughter still MDI, but, you know, we're not shy at all. He's a little bit more shy. But you know, back in the day, it wasn't as common and, you know, it wasn't as easy to, you know, whip something out it out at dinner, you know, there was more to it, you know, for sure.

Scott Benner 12:00
So, when your son's diagnosed, then, I mean, did you ever think to manage the way your brother was managing or you went along with what? What was suggested to you

Heather 12:09
know, I just listened to the hospital, and what they said made more sense. And I started talking to my brother, I'm like, hey, you know, this is how they told us to do it. He's like, Nah, I'm fine. Like I I do just fine. I know when he can tell when he's high. And he's, he's amazing. Like, he's like, I think I'm high right now. I'm thinking probably this number and he'll test and he's pretty dang close. And they'll say, I think I'm low right now. And he'll pick a number and he's pretty dang close. I don't know how he does it. Do you

Scott Benner 12:39
mean, do you know what he do? You know what that means? We say he's fine. Like, do you really know, his a onesies and things like that?

Heather 12:47
You know what I have never seen. Actually take that back one time. I did see as a one. See, it was 6.6. But that was a long time ago. Right. I assume it's the same, you know, I guess I don't know. He has no damage that I know of. I mean, this this is I don't I don't know he tells me is a onesies. I guess he could be making it up. But you know, I don't know for sure.

Scott Benner 13:13
That would be a lot of effort to call your call your adult sister to make up your agency tour. Yes, yes.

Heather 13:18
No, I do have to say when he was a teenager like I didn't think he was going to make it through his teenage years. Like I'm not kidding. We all thought that he just wasn't going to make it he had a horrible time with his diabetes and just in general being a teenager

Scott Benner 13:40
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Heather 16:50
So we were just we were how so? Did you

Scott Benner 16:54
Yeah, you can you can you tell me more about that?

Heather 16:56
Yeah, he he was kind of into some drugs, some friends that weren't the best friends. He struggled with. I don't know if it was just the diabetes, I think he just didn't want to be a diabetic at that time. And also just didn't want people to tell him what to do in general. Even without the diabetes, he just had a really, really rough childhood. You know, my parents didn't quite know what to do with him. They ended up putting him in a psychiatric hospital in the city, which was probably the worst place for him. But they didn't know what else to do. Because he just wasn't taking care of himself. And all that. And we really didn't think he was gonna make it. He ran away a few times. Called the paramedics I can't tell you how many times with him in convulsions. And so for him to make it through that we were all shocked. And he's I mean, I don't I mean, I guess maybe the paramedics have been called he lives by himself. So I don't know. But I don't know about it. If they have,

Scott Benner 17:58
I think your brother is brilliant. He set the bar so low, that just being upright, you're like he's doing amazing.

Heather 18:04
I know. Well, that could be part of it. But he also on the flip side, I grew up with it with him having diabetes so many years ago, so when they told me I'll all this new technology and stuff when my son was diagnosed, I'm like, wow, this is gonna be super easy. Because, you know, I remember with the test tubes and the urine. And yeah, I think we had little tablets, I wasn't really involved in it. I just remember holding up this test tube to different colors. And so I mean, it's come a long way. So I can I tell people that I'm like, I don't know if we'll see a cure in my lifetime. But I can tell you what has changed since my brother was diagnosed, and it's huge.

Scott Benner 18:41
Was there any concern not that they're even the same person but and maybe your your son might have a completely different personality. But when your son's diagnosed, do any of the thoughts of what your brother's life was, like creep into your head? Do you think maybe these were issues he was having? Because of diabetes, not personality? Or, or something like that? Did you ever worry about that?

Heather 19:00
I did kind of worry about it. I was a little bit more relieved because my son wasn't in general going through any of those problems at that time. And that's about the age that my brother was completely out of control. So my, my son was pretty, not that my brother wasn't a good kid, but he just had his struggles. My son wasn't having any struggles when he was diagnosed, so at least he had that going for him. So I didn't, that really didn't concern me. I wasn't too worried about that. I just was more worried about, you know, the end of the life that he knew, and now he has to join this new life that no, no mother, no parent wants their kid to have to struggle. And, you know, anyway, anyway, and so, you know, I was devastated for that. But I don't think it ever occurred to me that he would have any of the problems that my brother did.

Scott Benner 19:51
Okay, so your son's diagnosed, he gets, what kind of technology

Heather 19:56
he got Dexcom and he was doing and yeah i for a while, but I think it was like less than a year before he got the pump. So I got a T slim and he's still on both of those. And he's he's doing great.

Scott Benner 20:11
Did he go to college at the end of high school,

Heather 20:15
he went to college, he went to community college for a couple years decided that wasn't for him. There. That was really hard for me because I always told my kids, I'm like four year degree, you need a four year degree, I don't care what it's in, but get a four year degree. And then you know, things change. And he was a very smart kid, very bright computers. And he just didn't like school. So he ended up going and doing some sort of, uh, it was called like a boot camp, computer boot camp, and then some other training and he's, I call it his big boy job. Now he's got a real job now and with insurance, and he's doing great. He and his girlfriend bought a condo together, they've got two dogs, my grandkids, so they're, they're doing fantastic. And the girlfriend that is with I mean, I know she's gonna be around forever, because they've been together forever. But she was with him before and after diabetes diagnosis. And I think my feeling is anyone who's a young kid who can stick with somebody after the fact. That's a good, that's a good egg.

Scott Benner 21:09
I really only asked because I was wondering, how do you left? Was he leaving home after high school? Or was he still at the house? I was trying to figure out how management was going there. Oh, he was still at the

Heather 21:19
house. I think it was a year to try to think, a year, a year after because when he was at the community college, he was still living at home. But then he and his girlfriend moved into an apartment. So he I mean, he's always he's been really good about managing it.

Scott Benner 21:37
Do you follow his blood sugar's

Heather 21:39
I used to I don't anymore. I follow my daughters, and obviously my own. And that's about all I can handle right now. I don't think I can handle following him. Because I am sure that he has lows that he takes care of. And I'm sure he has highs that he takes care of. And I just, I mentally can't do it. I mean, I guess I could if I had to, but I don't think he wants me to tell you the truth. Do you

Scott Benner 22:03
still go back and forth about it? Like do you check in with him at like endo visits or anything like that? Or are you pretty much out of it?

Heather 22:10
Oh, no, no, no, I remind him, I make sure that he has his endo visits, I make sure he I'm still semi in charge of his supplies. He could do it. It's just easier for me because we're all kind of on the same schedule. So I just kind of ordered everything at the same time. So I need to start releasing that to him a little bit more. But yeah, he has I think his latest his last a one C was 6.4 or 6.5. It was one of those two, that's great, which you know, and he doesn't let it get you know, he's not as controlling about it as I am. But he does. Okay, like neither one of us has is on see IQ. Eventually, I think I might I'm getting closer and closer. But I think it's just the control. We like to see what our blood sugar is. We like to be able to be the one to be like, Oh, I'll correct it this way. Yeah. And I know, it seems like more work. But I'm so used to it that it's not more work. It's just way of life for me. And it's working. And it's working for me.

Scott Benner 23:11
Oh, yeah. I think whatever works is what's right. I I'm just interested about kids always in their early 20s. Right. They want to be independent. They don't You don't get to see my blood sugar. You don't have to be kind. But could you please order my supplies and do like they? Yeah, they want to be in charge of all the fun stuff.

Heather 23:26
Right? Yeah, no, I have to give him credit. He has never asked me to order his supplies. You just do it. I just have done it. And it's me. If I were to say, Here you go, it's on you. It would be totally fine.

Scott Benner 23:37
That's just like me saying that my wife vacuums my bedroom. And I don't say anything about it because I want her to keep doing. I don't ever whip out the vacuum and run towards the bedroom. Because I'm like, Well, if I vacuum it, she might stop. Yeah. So good. Yeah, I hear what you're saying. So okay, so wait a minute. So you're both using tandem control, but not control IQ. You're using I'm assuming g 6x? Calm? Yeah, he's got an A one C and the lower sixes and 24 years old living on his own seems terrific to me. Your brother's never shown any interest in this technology? Like never ask you about it be like, Hey, let me see that like nothing. Never.

Heather 24:17
Never. He's very private. I mean, he will. I mean, he doesn't hide it from us necessarily. But like in his travels and stuff like that. I don't. I think that's probably part of why he doesn't want it because, you know, God forbid somebody sees the wire. They might know he's a diabetic. I don't know this for sure. This is just my feeling. He's just, he's not open about it. Like we're like, I've got all of my supplies like all over the place sometimes. And like I said, if we're out in public, my daughter has no problem lifting up her shirt. She has an eye port, which is wonderful for her MDI. So she just lifts it up and, you know, takes a shot right there, right? No big deal. She's changed her Dexcom in public She doesn't care. Nobody cares. And I'm glad I normalized it. I didn't want people to be embarrassed about it. Because it's nothing to be embarrassed about. Obviously, nobody would do anything. You know, I told him I said, you know, if you're in a restaurant, don't turn to the person next to you and be like, Haha, look what I'm doing. You don't have to do that. You don't have to, like shove it in their nose. Right. But there's nothing wrong with doing this in public as long as you you know, yeah. are respectful of other people who might be a little queasy of needles or this and that. No, I

Scott Benner 25:29
think that's excellent. It's your situation. There's no reason you'd have to hide. So now the next thing I'm really interested in, is yes, that your son had diabetes for Am I right? About six years before you got it? Yes. Did you ever once think I might get diabetes?

Heather 25:48
Never. Okay. Never, never ever. I thought. I never I thought maybe one of my other kids would get it. But I never never crossed my mind that I would

Scott Benner 25:58
to you. And at 14 years old to me, you were Yeah, yeah. So

Heather 26:02
with the time I didn't know that there were so many people my age, all of a sudden, maybe not all of a sudden, but it was being more prevalent that people my age or older, were getting type one. But then once I was diagnosed, I started doing a little research. I'm like, look at that. There's a lot of us out there.

Scott Benner 26:18
Yeah, Jenny and I were talking about this the other day, while we were recording about how just probably the function of the JDRF being originally called the Juvenile diabetes Research Foundation probably makes a lot of people think you can't get diabetes after you're 18. You know, just a misnomer. So I'm wondering when you're diagnosed, does he turn into the parent? Or like, what's the what what ends up being the? You know what I mean? Like, there's, there's got to be this moment where he's like, Oh, she has a thing I know about like, like, I've had this thing, nobody else has had it. Now my mom has it like this he become you don't I mean, like, does he turn into a mentor? Or does he like, the whole dynamic?

Heather 27:01
You know, he actually was a mentor. I don't know that he necessarily wanted to He never complained about it. But I was the one asking him. That was like questions. I had so many questions for him. And especially when I went on the pump, I had questions for him. But when I first was diagnosed, and I was just doing shots, I remember the first shot that I had to get myself and this is when I was misdiagnosed as type type two, but I think it took me 45 minutes before I finally was able to get my shot. And my son sat there and he was just laughing hysterically. He's like, Mom, just do it. Like, and I try, you know, I, I get ready, and I, you know, 123 and then I'd stop and he's like, Oh my gosh, just do it already.

Scott Benner 27:39
You had given him countless shots. I had given him a million shots.

Heather 27:43
But for some reason, I just couldn't do it to myself. But he has been he has been a mentor, and I still talk to him about it. Like, you know, I'll you know, if I find something that works for me, I'm like, Hey, you might want to try this. Like, you know, the never ending pasta battle. You know, we both love pasta. And you know, we're looking always looking for different kinds or different. Extended boluses or this and that or different ways of doing things. And we'll share. You know, what works for us. What doesn't? Yeah, different low snacks. We're always looking for new low slip low snacks. I mean, not as much anymore. I guess he's not my mentor. But at the beginning. Yes, yeah.

Scott Benner 28:23
I just met at the beginning. And by the way, dreamfields is my favorite pasta. I find it the easiest to Bolus for oh, okay, so now so now here's my, here's my real question. They're not a sponsor, but I would let them be just in case they're listening.

Heather 28:39
I'm gonna write that I'm writing it down right now.

Scott Benner 28:41
You know, I thought maybe it was possible. You worked for dreamfields. And you're gonna I, so now I want to dig into this a little bit. The difference between being the caregiver of someone with type one and having type one. So what, what were the things that happened? When it became about you? And how was that different than managing it when you were helping somebody else?

Heather 29:07
Oh, let's see.

Scott Benner 29:10
I want you to know, I think about this all the time. I wonder, like, what would happen if I woke up one day and I had type one, if this podcast wouldn't turn into like me being like, Oh, I'm so bad at this for myself. You know, or, or if, if I be able to apply it and work there'd be psychological things or like it just seems like it's I don't know, it's it seems to me like there's a big shift in there somewhere. Maybe you were effortless about it. I don't know.

Heather 29:39
I don't think that there was a big shift for me. If anything, I think it was maybe easier. Because I always felt like when I tried to. Like I said my son really sort of took over from day one. I tried to be a little bit more controlling, but he really he just took it and ran with it. He was amazing. thing, as was my daughter when she was diagnosed. So when I was diagnosed, I really wasn't answering your question. I really wasn't taking care of him that much anymore. So the focus was really just on me. And I, I guess there was a little bit of a little bit of guilt, because I'm like, Oh, great, you know, definitely comes from my side of the family. And, you know, once I was diagnosed, I'm like, well, here now I know, I've given my kids even a stronger chance of getting it. But as far as caretaking? I don't. I don't think there was much of a shift other than him all of a sudden becoming the mentor. What about perspective?

Scott Benner 30:43
Were there things that you were doing with him? That you maybe didn't see the the complete range of emotions that would be impacted or something to that effect that when it is something you had to do to yourself? You recognize that? Oh, gosh, there's more to this than I thought or is everything about the way you expected it?

Heather 31:04
Um, I think maybe like when he would be low. Like, even if he wasn't super low, I was like, in a panic and like, hurry, hurry, hurry, hurry, gotta do this. Gotta do this. And for a kid to hear that that's like nagging. Like Leave me alone, mom. I mean, I know it's emergent, or it can be emergent. But then when I was having those lows, I'm like, Oh, 75. I'm fine. I've got a little bit. So I kind of would look back and be like, Oh, I was kind of a bully to him. Not not a bully. But I was kind of very naggy to him. Just take care of it, take care of it take care of it when that's about the only thing I can think of all I

Scott Benner 31:42
did was art. It was 65 the other day, and it was sitting there and I'm like art and this is not holding on. Like I showed her the line. I'm like, look at the line. The line is telling us it's gonna keep going down. If you just did something right this second, it would take a few carbs and it would be over. And she's like, I have plenty of time. Plenty of time. Yes.

Heather 32:00
Oh my gosh, she sounds like my daughter. Right? I get I get 50 threes. She's in college and I get 50 threes like Arrow angle down. I'm like, you know, I always send her like a blood drop and a low arrow text. Like, just tell me that, you know, this is going on? She's like, I'm fine. I'm fine. You're not. You're not fine.

Scott Benner 32:19
It's always it's always like, it's fine. I'm like are now the hours diagonal down. I was like, yeah, the Dexcom is not. It's not magic, right? You know, it's not exactly what's happening. Now. It's a little behind real time. You're probably a little lower than this already. And then you know, 55 and then she's like, I'm dizzy. And I'm like, Oh, no kidding. Are you really? I don't know how that goes. Well, that wolf is gonna kill something.

Heather 32:42
I know. Yeah. Sorry about that.

Unknown Speaker 32:44
What kind of dogs are Labradors? Oh, wow, very nice. They're

Heather 32:47
Yeah, they're two years old. And they

Scott Benner 32:50
think they see something.

Heather 32:52
Yeah, they probably just hear something outside. But yeah, my daughter does the same thing. Sometimes I just don't want to follow her just for that reason. It's worrisome to because she can't feel them half the time like I'm 75. And I start to feel a little bit shaky, right. But I'm okay for a little bit. And then as I get lower, I get like sweaty or and this and that. She it takes her a while. And then finally she's like, oh, yeah, I guess I did feel that I'm like, Oh, gosh. God help us all.

Scott Benner 33:22
How old? Was she when she was diagnosed? She was 18. Okay, and how old is she

Heather 33:27
now? 90. And she was diagnosed a year ago in February. Okay, and you have another child? I have another child. And we did TrialNet with him. And so far, he has no one of the auto antibodies or whatever they're called antibodies for type one. Yeah. So he has none of them. You know, they say that that should be good for about five years. Who knows? We'll see.

Scott Benner 33:50
How old is he? I'm sorry. He's 2222.

Heather 33:55
Yeah, so I'm not that I want any not that I want any of my kids to have diabetes. However, of the kids, I have the two that have it are the best to have it. This one who does not as of now, hopefully it stays that way. He struggles with some anxiety and depression already, and I think that would just be not a good situation. I mean, we'd work we'd figure it out. But I just I'm hopeful that he is spared.

Scott Benner 34:23
Are there any other autoimmune, the family? Non celiac? Nothing? Nothing. How about extended family? Your parents mom got a thyroid problem.

Heather 34:34
No, everyone's pretty healthy. the only the only other diabetes we have in our family is my dad's aunt who has passed away not from diabetes. I think she was just old age or maybe it was a combination. But she excuse me, she had diabetes. That was the only other diabetes that we knew of in our family. And still to this day,

Scott Benner 34:54
you said not diabetes she and my brain filled in was hit by an elephant. That's what I wanted you to say. I don't know. Oh, I wanted like some exciting death for this poor woman. For the podcast. That's the three kids have the same father. Yes. Okay. Are you married? No, not anymore. Okay. Does he have any issues besides being a terrible guy? Uh, no, I'm just kidding.

Heather 35:19
No, actually, I wasn't gonna bring this up. But I, it's fine that you brought it up. He actually was diagnosed with type one as well. I don't know. And I wasn't gonna bring it up, because I don't know a whole lot about his situation. Holy Hell, I know. But he was diagnosed, he was a pilot in the Navy. And we were still married. And he was diagnosed at that point as type two as well. And he, which was weird, because he was like, tall, skinny. I mean, fit. So that didn't make sense. And I didn't know a whole lot about diabetes other than my brother at that point. So I you know, I just went along with it. And so that kind of spiraled down. It was like a downward spiral for him. Because if you're a pilot in the Navy, that's who you are. And if you can't fly, your life's kind of over. Yeah. Or

Scott Benner 36:10
so you think I put up? I put up an episode two days ago with a mom whose kid wanted to be an Air Force pilot because his father was, and he was just diagnosed recently. It's interesting that you said pilot. Hey, just real quick. A health check on you. How's your uterus? You? Okay? You pumped all those kids out pretty quick. I'm starting to look at the dates now. And it's hitting me you made those babies in a span of like, five years, right?

Heather 36:34
Oh, probably not good. Machine heaven. Well, okay. So here's the thing. I got married. He was in the Navy, I couldn't really hold down a job. Because we were moving like every seven months, right? So I figured I might as well have my family. And I'm glad I did. Because I'm I'm 48 and my youngest is 19. I mean, I love the fact that I'm, you know, one day gonna be a young grandma.

Scott Benner 36:58
I have to be honest, I'm there with you. I'm 50 my son's 22. And Arden is going to be 18 in a couple of months. You're a little younger than me in that spectrum. But I really do. Because there are times we go to kids events. And there are parents who are sometimes 1518 years older than me. And oh, yeah. And I'm like, I don't even know how they're doing this. I'm tired. When I get home from this thing. You know what I mean? So

Heather 37:22
especially where I live, where the area that I'm live in the parent age is much older than me. Like I was by far the youngest mom of all of my kids friends. Yeah. When they were in high school, a grade school. Bit so yeah, I did I you know, I started Yeah, but glad I did.

Scott Benner 37:44
Yeah. When when my kids were younger, even cultural references from other parents. I'd realized I'm like, Oh, my God, we're not even the same generation. Yeah.

Heather 37:54
Yeah, I mean, some of these parents I'm like, is that I'd have to ask my kid I'm like, set their grandfather is that their dad? And even now, even though I work at a school, and even now some of the parents I look at them, I'm like, holy cow. Yeah. Like, how do you have any energy? Because I certainly if I had somebody in elementary school right now, I could do it. I don't want to do it. That's the thing.

Scott Benner 38:16
My son said to me, like, yes, he's like, Hey, I might be pitching on Wednesday. Do you want to come up with like a two and a half hour ride? To probably watch him pitch for a couple of innings? You know? And I'm like, Yeah, I'll be there. But if I was 10 years older, I'd be like, I don't know, man. Tell a friend to hold up a video camera or something. Because I can't do I can't drive for five hours to watch your pitch for 30 minutes. But yeah, I still feel lucky that we can. We can do that kind of stuff. Yeah. I mean, there's there's there's trade offs. I mean, we had kids when we were like, like we were functionally idiots. Still, we were pretty young. And there was a lot of stuff we didn't understand. But even that didn't I mean, it didn't stop us. It didn't get in our way. It was just, it was different. I do see the benefit of sometimes older people, they make more. I don't know. Like they they they had more life experience on their own, I guess, which is definitely something I don't have. I have no experience about being by myself, that's for sure. Anyway, I just I just started doing the math. I'd like I'd make notes while I'm talking. And I'm like 24 2219 She's 48. And I was like, hold on a second.

Heather 39:19
Yeah, no, I was done before I was done having kids by the time I was 30, or before I was 30. Something like that.

Scott Benner 39:24
Yeah. But now let's get back to what you brought up because that's even more astonishing. You have type one diabetes, and you married a person who ended up also having type one diabetes, your kids had no chance, I'm guessing. But the odds there you know what I say the odds must not be good. This is not the first time someone said this to me, but but still, that's insane. But given

Heather 39:48
anything like for both of us to have been diagnosed later in life is really bizarre. I think it's very, very strange.

Scott Benner 39:56
Are you on top of like a, like nuclear waste? store

Unknown Speaker 40:00
like not that I know of. Now we're aligned. What else that's buzzing really

Heather 40:05
well. I grew up in Georgia. And I moved here. I moved here on as a second grade. And he lived in the same area around here, but sort of a different town. So no, I don't think so.

Scott Benner 40:17
House is a yellowing. Basically basement doesn't smell weird. Like

Heather 40:22
I guess I grew up I didn't grow up around a lot of like, wire you know,

Scott Benner 40:27
I'm just kidding.

Heather 40:27
I don't. But yeah, I I don't I really don't know. But he, yeah, their dad. He's very secretive about his like when they used to go visit him. Like my son had to go to the bathroom, even at their house to do a shot and this and that. And I thought that was ridiculous. But but he's very secretive. Not that secretive. That's a bad word. Right? Fit. Thank you private, very private about his

Scott Benner 40:53
use his diabetes. I know you guys aren't together. But do you have any idea of how he manages this? He is he using tech or

Heather 41:01
a he does not have a pump? He I think he's just MDI, and he did have a Dexcom. But my daughter just recently told me that he was sending her all of his sensors because he didn't like it. I don't know why he didn't like it.

Scott Benner 41:15
All that information that helps you be healthy. It's upset. Yeah.

Heather 41:18
I mean, I think it's fantastic. Oh,

Scott Benner 41:21
everything's not for everybody. But yeah, really is that's I'm genuinely when you said that. I was like, I just wanted to tease you about having a bunch of babies. And then you were like, Well, I wasn't gonna bring it up. But he has type one. Oh, my God. Do people cross the street when they see your family for fear that you will give them diabetes?

Heather 41:42
I don't know probably if they saw us, but

Scott Benner 41:45
oh, here comes those people. Oh, my goodness, get on the other side of the road.

Heather 41:49
I tell you, we've got a lot of supplies in this house. That's for sure.

Scott Benner 41:52
That, that it looks like a pharmacy in there

Heather 41:56
that we have a lot and like when my daughter was diagnosed, they she couldn't get a Dexcom right away with insurance. We had to wait for that to line but a little bit, but I was like, desperate. I'm in a site called my son. I'm like, how many transmitters Do you have? He's like, I'm good. Mom, I've got plenty. So we were able to slap one on her right when she got home from the hospital. Because we had you know, we had plenty of supplies between the two of us.

Scott Benner 42:18
You can kind of treat the supplies like a rolling. It doesn't matter. Really? Right as as long as you

Unknown Speaker 42:24
Oh, that's nice. It's kind of nice.

Scott Benner 42:28
Finally, the upside of three people in the house.

Heather 42:31
Yeah. And I you know, I know a couple people local and I'm like, if you ever need anything, you know, not that I you know, can give away everything. But if you get stuck, let me know.

Scott Benner 42:40
On the back of a van. You're selling watches and lending people, sensors and stuff.

Heather 42:45
Can I interest you in a transmitter?

Scott Benner 42:48
I've got this G five still now says it's out of date. But you know, how far is your daughter away at school? She local or she somewhere?

Heather 42:58
She's not she is not far at all. She's just up in Milwaukee, which is not far it's about without it there. There's hardly any traffic going that way anyways, but it's like an hour and 10 minutes. So that's phenomenal. Really close. I love

Scott Benner 43:09
it. I think Arden is gonna go to Georgia. And that's, of course a plane ride for us.

Heather 43:16
See, well, my daughter wanted to go to Pennsylvania. And I was like, oh, like, this is before diagnosis. I still thought that was too far. Like, oh, you know, you can't come home on you know, long weekends and stuff like that. And then she got diagnosed, and I was like, oh my god, I was like panic stricken. I was like, oh my god, oh my god, oh my God, what do I gotta do? And then she picked that school, and I was just breathed a huge sigh of relief.

Scott Benner 43:41
Did she seem to care about the distance? Or was it just something you were worried about? Oh, no,

Heather 43:45
it was a total mom problem. She was not concerned at all. I mean, as far as her diabetes go, she was not concerned at all. I think she started thinking like, Oh, if I ever want to come back home other than, you know, long breaks, I'm kind of out of luck. And this school that she went to happen to give her the most money and she didn't want student loans. So she made a smart decision for and it's a good, it's a phenomenal school. So, you know,

Scott Benner 44:08
no, that's good stuff. You know, with Arden, we've had some opportunities in the last couple of months. I mean, we've obviously been slowly handing Arden's care to her very slowly, very slowly. But I sped up a little bit a few months ago, and I just said look, if you expect to go away to school, you really have to be able to take care of this like front to back. So let's, you know, I'm gonna back out of this as far as I can. And, you know, you're gonna take your lumps here, but like, let's let you like get to each student really great job. That's good. But still, it's you know, it feels like a really, really far distance. You know, like she's, we drove down there for the visit and it was like 1415 hour drive and you know, if you need to take a flight it's gonna be Yeah, it's gonna take

Heather 44:54
my my middle son who is not type one. He went to school about three hours away and he had a medical emergency. See, and that three hour car drive was the longest car drive of my life. Like it felt like it was, I don't know, four or five days, I just, I couldn't get there fast enough. And the fact that she's only an hour and 10 minutes away, just makes you breathe a sigh of relief, because it still would be, you know, in a medical emergency, it still would seem like a long time, but it's a whole lot faster than anything further. Yeah.

Scott Benner 45:22
The other place Arden was thinking of was in Manhattan. And that's an hour for so I was like, that's fine. Like, I could even get on a train and be there in like 90 minutes. And so I was like, Yeah, do that, like, you know, although I have to admit the living in Manhattan Park sounded really expensive. Sounds like, yeah, so maybe not. Yeah, maybe go to Georgia. I want to shift gears here a little bit. And you put this in your note to me. And so I'd like to learn more about it. Because it's the first time it's come up in the podcast. But one of your children had a health difficulty with vaping. Yes. And I wanted to know more about that. It's not something I know anything about.

Heather 45:57
Yes, that was my 24 year old who is type one. He was vaping. And I knew he was vaping. I was not happy with his vaping. He was vaping. Marijuana. I was not thrilled with it. It wasn't a all day long occurrence. But it doesn't matter. To me, it doesn't matter. I just didn't. It wasn't the marijuana that bothered me so much. It was the vaping part. Like there's so much stuff in there that you don't know about. And, you know, sure enough, he got sick, he because I had told him from the time he was diagnosed as type one. And when he moved out the house and like he ever gets sick if you ever get a fever, and it's you know, let me know, let me know right away when you have a fever, because I'm always scared of decay. So he called me one day and he's like, you know, my member, you told me to let you know, like, whenever I had a fever, I said, yeah, he's like, Well, I've had a fever for like four days. I'm like, Oh my gosh,

Scott Benner 46:49
I got right on it mom.

Heather 46:52
Like, thanks for letting me know on day one. And he's like, you know, I feel pretty bad. I've been to the doctor once. They said I have just like a pneumonia type of thing. And I was like, Okay, well, that's not great. But, you know, let me go grab me some groceries, I'll get you some, you know, just sick, sick food, you know, especially with diabetes. I wanted to make sure that he was you know, getting the carbs and taking the insulin to stay away from DK. So I ran to the store, went to his house, walked in, took one look at him dropped the groceries. I'm like, You are not okay. So we went straight to the hospital. And sure enough, they got us right in because they didn't know what it was. And they you know, they thought it was an infectious disease, something because he couldn't breathe. I mean, he was coughing, and he was happy. He could, but he just had a very hard time breathing. But he was miserable. And so they got us in and they admitted him. You know, we all had to wear gowns and masks and stuff like this well before COVID. So this is all new to us. And you know, we had all that. So the first two days, he was in a general room, and they still didn't know what was wrong with him. They're like, Oh, he's got this. He's got this, maybe this, but tests were all inconclusive. Like nothing came back positive. So it didn't know what was wrong with him. But he continued to get worse. So then they're like, alright, we'll do a biopsy on his lungs. And I don't, they knew that he was vaping. They knew that he had a history of vaping. But it just I don't think I don't think it clicked with the doctors because this was all new. The whole vaping I forget what it's called vaping lung

Scott Benner 48:28
disease. Disease. Yeah, I'm looking at it right now. It has

Heather 48:31
some sort of a name now. But then it didn't, because it was just the beginning of all of these have this packet of time where all of these people were getting sick. So then they went to do the biopsy and as long and when they were doing that he stopped breathing, or his stats went down to like 20. Whatever happened, they put them on a ventilator. And there he stayed for, I think it was 12 days. Wow. Well, he was on a ventilator longest 12 days of my life, of course, because they just didn't know what was wrong with him. And I think it was like, I don't know, the first couple days he was on the ventilator on the news was the very first deaths in Illinois from this vaping disease. And I thought, here we go. And right then I'm like, here's this is what's going to happen. And I started to prepare myself. And that sounds terrible. But that's personally how I deal with things like I would have been devastated. No matter no matter how much I prepared myself, it would have been just horrible, and I just can't even think about it. But at that time, I'm like, I just have to read myself, I have to enjoy the time that I have with him now. And that's what I did. And I did not I hardly left the hospital. They like forced me to leave a couple of times. They're like you really need to go take a shower, or you really need to go get something to eat. Or in the one time I actually did leave because my daughter had some sort of fundraising meeting or something and I felt bad because I you know, wasn't paying attention to any of my other kids. So I went to Get out with her. And of course, the doctor called me the hospital. They're like, You need to get back here. His I think his lung collapsed or something, something pretty bad had happened. So I flew back and I'm like, I'm never leaving the hospital over again. Yeah. So it was it was pretty bad. And they, again, they didn't know what was wrong with him. They thought they knew, eventually with the vaping, and the deaths that were happening, and all the all the illness around regarding this that was popping up, right, but they didn't know what to do. So on his lucky for him, he was young, lucky for him, his heart was in great condition. And they just pumped him full of steroids and cross their fingers. And somehow, I don't know how but somehow he came out of it. Wow. And, but during that time, his type one care I was panicked about two and the first two days was horrible. The nurses, probably no, it probably was not their fault. They just didn't have the training. They didn't know what to do. They were doing sliding scale, and it just was a mess. But then once we got to the ICU, those nurses were phenomenal. Like, yeah, oh my gosh, they not only did they know what to do, they respected my wishes, like they, they would tell me, they let me keep a Dexcom on him. And this poor Dexcom went through CT scans, I know it's not supposed to, but it survived. And I still did poke his finger just to make sure but it just made me feel better to kind of have a gauge and even without going through all the CT scans, and he had one like every single day. Um, that desktop still worked, it still was pretty much in range, even when I poked his finger, but they they really respected my wishes of letting me know, like when they would test him, they put everything up on a whiteboard. So I could see they let me know how much insulin they were giving him. They would ask me is this okay? You know, do you think do you agree with this, and I can't say enough about them. Like, I wish I could go back and hug each and every one of them because they just they knew how concerned I was about this vaping illness. And above that I was concerned about his diabetes as well. And they just couldn't have been more wonderful. That's

Scott Benner 52:09
excellent. Are you going to obviously heal better if your blood sugar's are stable and lower. So

Heather 52:14
Right. And that's, that was part of my concern, you know, the first few days of these nurses who didn't know what they were doing. And again, no fault of their own, because they were probably trained to do what they were doing. But once I got up there, they just they really, and I taught them a lot, too. They're like, Oh, we didn't know that, or we didn't know that. And so we worked together, and we got him through it somehow. But it was how long?

Scott Benner 52:39
I'm sorry, how long until you thought he was out of the woods. Like what was that timeframe?

Heather 52:45
Not until they started trying to take them off the vent. So, so two weeks, because it was it was bad, bad, bad. And every day, his lungs would get worse. And at one point, his X ray, you couldn't even see his lungs. It looked like a just a white screen. I mean, it just was it was completely covered. So that was pretty scary. And again, they just kept pumping him and he you know, he was sedated, was in a coma. But he was sedated for the ventilator. And then I think it was on day 10 That they're like, Okay, we see a little bit of improvement. And he was had started to grieve over the vent, which I didn't know, I didn't know you could do that. I thought if you were on a ventilator, you were just on a ventilator. I didn't realize you could also breathe at the same time. But he was like fighting the ventilator with his breathing even though he was sedated. And they said, Well, that's a good sign. So they and his X ray started to look better. I think actually, I think it was like day nine or I don't I think maybe, let's say day 10. Right, it's X ray started to look better in the morning. And then in the afternoon, they looked even better. So then they're like, alright, we'll start trying to I forget all the medical terms, something to do with peep there. I remember that word. It had something to do with the, I think the amount of air that they were giving him. But they started to wean him off of the ventilator and see what would happen. And the first day it didn't happen. We all had our fingers crossed. We're like, Oh, this is gonna work and it didn't. So they had to sedate him again. And then the next day we tried to get in the morning, didn't work. And then the next afternoon we tried again. And as we were trying, because x rays were getting better and better. No idea how or why. Maybe his body finally started fighting it. I don't know maybe the steroids finally started to work there charm that we'll never know. But he started to get better. And then finally, I think it was on the 12th day. It the morning didn't work but the afternoon time worked and they were able to take the ventilator out how long

Scott Benner 54:45
prior to the illness had he been vaping you know?

Heather 54:53
Probably a couple of years. So I don't think it was. I mean vaping I think is not good for you. I'm just going to, that's my personal feeling. I think he got a hold of some bad cartridges that had what I think they find found it was like the vitamin E or there was something else that was tainted in some of these cartridges. And that's why all of a sudden all these people were getting sick. And I think they must have stopped putting that in the cartridges since then, because now you don't hear of it. Was he just yet at that time? Was

Scott Benner 55:24
he just vaping? Like weed oil? Or was he also like just doing I guess nicotine?

Heather 55:31
He never Nope. It was always weed oil. It was never nicotine. So he don't hate must have gotten a bad cartridge, maybe an illegal cartridge. But I remember the CDC wanted to they got a hold of all of our all of his cartridges and some lady it was kind of like it felt like it was like a little drug deal or something she showed up at the hospital with this bag. And we had to do a little trade off. You know, we went through all of his drawers at his house and got all of his stuff that he got because we wanted to give it to them so they could try and figure out what was going on.

Scott Benner 56:06
That's amazing. Well, yeah, it was a big problem. They were it was it was panic, too.

Heather 56:12
Yeah. I mean, it was a huge problem. And it happened very quickly. And it lasts. It was very severe for I think like two or three months. I don't really remember because I was really focused on just him. But I remember it being really bad for a short while and then it was gone. So and unfortunately he was one of the ones and he actually I think they called him patient zero or something at that hospital. Or maybe it was in the county. I don't know if it was in the state or if it was in the county. I can't remember. No, that's not an easy one. No, no, no, it's not. And you know, now we now we joke about it now that he's okay, because he's like, Hey, Mom, I two claims to fame, my patient zero for that. And then years ago, he and his brother both got whooping cough, which they both were vaccinated against whooping cough, but they were on the news to students at so and so high school, whooping cough. So he's like, I've two things mama, like, Oh, please don't be proud of those.

Scott Benner 57:04
I don't know if you all remember the whooping cough kid. But guess what? He's back. He's back. Not to make light of this. But how does he get his weed and now?

Heather 57:13
Oh, he does not touch anything. Well, that was it that fixed it. The thing is, he was on a ventilator for 12 days, of course doesn't remember much of that. That's not what stopped him from vaping or smoking weed. What stopped him is his chest tube that he had in those three days after he was off the ventilator when he was conscious. They were draining his chest. He said I don't ever want to have a chest tube and ever again, he said he could feel it. Every time he moved. He said the whole idea of the chest tube. He said so he said so if any parent ever wants their kid to stop smoking, tell them to put a chest tube in their kid and I guarantee their kid will.

Scott Benner 57:54
I don't know if that's a viable deterrent, but I don't I don't think

Heather 57:57
it is. But you know,

Scott Benner 58:00
I take his point. Oh, I see. So he stopped the Yeah, that's um, that's something else. Okay. Yeah. Hold on. We've done a lot here. Give me a half a second. I gotta breathe.

Heather 58:15
I know, we've got a lot going on in this family. I

Scott Benner 58:17
mean, honestly, there's so much happening that any I mean, there's no way to like even head down a road. But I do want to go back to your to your daughter because I feel like we just kind of skipped over her for a second. So you are helping her manager? No.

Heather 58:34
I'm not really. You know, I if I see it being low, I just remind I mean, when she she sees it slow to she never doesn't see it. I just like her to acknowledge to let me know that she sees it because then I feel better. I'm like, Okay, I know she, she sees that she's taking care of it. But as far as management, I don't do too much. I mean, she's in college now. So there's not a whole lot I can do.

Scott Benner 58:58
Right? Do you go with her to no appointments?

Heather 59:01
I used to I don't anymore. We have the same Endo. She and I luckily that's the one that came to see her when she was diagnosed in the hospital. So she got to be with her right away, which was fantastic. I was so excited. So we didn't have to fight to switch doctors. But I don't go anymore. But she you know, she has signed a waiver and I can ask questions because we usually have our endo appointments about the same time because we're every three months so I'm usually a week or two after my daughter.

Scott Benner 59:28
So you guys, she's she's not using a child's Endo. She's using an adult No,

Heather 59:33
she's an adult because she was 18 when she was diagnosed, you can stay

Scott Benner 59:37
with them longer if you're in college. I think it's 24 maybe it's the number you can keep pediatrician into your 20s right

Heather 59:45
but she because she was 18 at diagnosis they didn't start with a excuse me a pediatric No they just sent her straight to the adults which is fine. I'm glad they did because our doctors phenomenal I love her. But yes She,

Unknown Speaker 1:00:00
I'm sorry. Oh, that's sorry.

Heather 1:00:02
I was just say she was diagnosed back in February. And that one, they all the signs were there. I just I don't know if I chose not to see them. She had lost a lot of weight. But you know, it was also a teenage thing. You know, she lost a lot of weight, but she'd been exercising. She was hungry all the time. But she was a teenager. She was drinking all the time. But she she's been doing that for like, a million years. That's just her

Scott Benner 1:00:26
water. Yeah.

Heather 1:00:28
So all of those things. It just didn't click, or maybe it did click, and I just didn't want it to come to the surface of my brain. I don't know. But then she started really? Uh, go ahead.

Scott Benner 1:00:40
No, I was gonna say, if I was you, I would have tried. I think my brain would have tried to avoid it, too.

Heather 1:00:45
I really think that my brain probably was, yeah, because she lost a lot of weight.

Scott Benner 1:00:50
You've had enough? Yeah. Honestly, if I'm being I mean, no one's in charge of this. But if there's a you know, if there's a line that says, I've had my fill of this, I think you're done. I think whatever you owe the universe you you paid back already.

Heather 1:01:05
I hope so. Yeah. I hope so. But I brought her she went to the doctor, not because of those symptoms, but because she had really bad heartburn, like so much so that she had stopped eating. She's like, it just hurts. I can't swallow anything. So I'm like, alright, we better go have that checked out. And the doctor, you know, checked her out and saw the weight loss, but didn't think any thing up? I mean, she mentioned it. And she's like, are you working out? And my daughter is like, Well, yeah, she's like, well, it's quite a bit of weight. And,

Scott Benner 1:01:34
again, Heather, how does somebody not go? Well, since your mom, your dad, your brother and your uncle have type one diabetes? What if we just checked? Well, we had

Heather 1:01:43
seen a doctor there, there was like five PDF pediatricians in the office. And we had our general one, but that one was busy. So we saw somebody else. And I always am convinced at that time, I was always convinced that somebody you know, I don't know, I always ask the question. Could it be diabetes? Yeah, I would, if I was you. And I didn't say Could it be diabetes, necessarily, but I just said, just do some blood work just because this is just weird. And she's just not eating. And as long as we're here and the doctors like, oh, yeah, sure, no problem. You know, go right now we'll do some blood work. And she gave us some acids or prescription for something. And so she went to get her bloodwork done. And then that night at like one in the morning, my phone rang. And it had a city that's close by and I thought that's weird. And then my, but I didn't get to it in time. It was the house phone that rang first. Well, I'm sorry, take the bike, the house phone rang first, I didn't get to it because I don't have a house phone in my room. And then my cell phone rang and it said the city and I thought that's that's gotta be the hospital. And you know, it could be some one of my other kids. So I answered it. And it was our real pediatrician. And he's like, how's your daughter doing? I'm like, what I'm like, half asleep. He's like how she doing? I'm like, I don't know, she's sleeping. He's like, her glucose levels. And as soon as he said that, I flew out of bed. I'm like, Oh, my God, you stop there, right there. Because I know exactly what you're going to say. Yeah. And he said, You need to get out of the hospital, blah, blah, blah, blah, blah. And, and then the next day, the original doctor called and she said, I just want to apologize. She said, I should have done a urine test. And I said, Don't you know, don't worry, you know, it's fine now, right? She's not gonna work out. She's okay. You know, having not seen all of the background, I probably wouldn't have thought that either. Because she didn't present with you know, she didn't say hey, I've been drinking a lot of water. Hey, I'm hungry all the time. She just said I have heartburn and I can't eat.

Scott Benner 1:03:37
I think tandem index calm should send you like a punch card, like at a submarine shop, you know? And like after a certain number of sensors, I send you a free one or something like that. Fair. Seems fair on that one. Yeah, it would be nice. Yeah. You want to be on the box of the of the tandem tee slip,

Heather 1:03:54
man. You know,

Scott Benner 1:03:56
I just like, you know, sitting there.

Heather 1:03:58
I'm trying to convince my daughter to and not really convincing. I'm just trying to I feel like she'll have an easier time not that she's having a hard time with MDI. She really is doing great. But she's she's like, I just don't want to pump it's fine. I don't mind carrying around my insulin and this and that. At first. She was going to do Omnipod back when she was first diagnosed, but now she's like, I don't know. I'm gonna stick with what I'm doing for now.

Scott Benner 1:04:19
Yeah, again, I think people should do what's working for them. And

Heather 1:04:22
yeah, and so whatever works for her. Yeah. You know, I love my pump, but that doesn't mean that she will.

Scott Benner 1:04:28
How do you? I have one more question. How do you come to find yourself listening to the podcast?

Heather 1:04:35
Well, I started listening religiously when COVID hit because I started really walking a lot. And I needed something to do and I can't I don't know if somebody told me about it or how I came across it. But I really enjoyed it and a lot of the things I already knew, but it's just, it's just it's nice to hear other people. It's nice to feel like you're not alone. It's nice to hear that other people have problems. You know, you might not have them. i That sounds bad. I don't I don't know. I mean, it's nice that other people have problems. There. Let

Scott Benner 1:05:07
me stop you. I agree with you. And I know you didn't mean it in like a like a biting light. But it is comforting to not feel alone. Yes. And in this scenario, other people having problems is how you don't feel alone, which is yes. Sucks for them, but really great for you. Yeah, no, I know what you're saying.

Heather 1:05:28
Yeah. So when I, you know, would hear these different things. I'm like, Oh, my gosh, it's just so devastating. And then I'm like, my problems don't seem like nothing. It's like, okay, yeah. You know, they had to deal with that my mind is nothing. And I just, I really, even though I knew most of the stuff, it was fun to listen and be like, oh, yeah, I'm doing that. I'm doing that. Oh, I should try that. I haven't been listening too much lately up. It's been so busy. I couldn't even tell you what I'm doing. But I need to get back into it. Because I there's so many that I haven't listened to. But I did send my daughter when she was first diagnosed, I sent her list of like the the important ones like for the newly diagnosed and she really enjoyed listening to them as well.

Scott Benner 1:06:11
I'm glad I actually am getting ready to do an episode with Jenny, where we I went on the Facebook page and the private Facebook page, and I asked people about what helped them when they were newly diagnosed, or what they wish somebody would have told them. And we compiled what everyone said, and Jenny and I are gonna go over and an episode. Oh, which that'll be a good one. Yeah, I'm excited for but you know, it's funny. A lot of people I know who have podcasts about other things, not diabetes, specifically, they would say that the COVID killed their show. And my show like, like exploded during COVID.

Heather 1:06:48
Well, and I'm definitely one of those people because I, I would do this three and a half mile loop. And I put your earbuds in and off we go.

Scott Benner 1:06:58
Listen to it, I appreciate it very much. My initial concern was that, oh, I just in my mind imagined that people must listen while they commute. And now no one's commuting anymore. And my gosh, this is gonna be terrible. But it absolutely went the other direction. So I was really I was really grateful. I was nervous there for a while there was about a week and a half, two weeks, where not just me. But every podcast, like like podcasting dipped, like I think it was 18% One month at the beginning of COVID. And I heard these reports. I was like, oh, gosh, and I went looked at my numbers. And I had gone up and I was like, Oh, am I gonna be the exception to this rule is like, please. And you know, it did work out that way. So, I mean, COVID was great for this podcast, I can't believe that's what I'm saying. But it really was, it really helped it explode even more. Which was, you know, I'm grateful. I'm grateful other people find the, the information, you know, and have an opportunity. So it's just very cool. So your daughter did listen. I'd like to see you get your brother to listen, I bet you couldn't do that for money.

Heather 1:08:06
There's no way not gonna happen. Unless I play it when he's here. It comes up on Saturdays. Maybe I'll just blast it.

Scott Benner 1:08:13
I'll tell you boy, I don't know if he's got that type of like personality where he'd want to talk. But, but there's something about his story I find really interesting.

Heather 1:08:23
You know what, I think he would have a fantastic story. If I can convince him to do it. We'll see. I don't I don't know if I can I don't pressure

Scott Benner 1:08:30
him. But if he ever comes up, tell him I I'd be fascinated to hear from somebody that's been managing for that long that way. And hear how he's doing and what he's doing. Really, sincerely. Yeah, that'd be something.

Heather 1:08:44
Well, I'm I'm still confused. I mean, not confused. I'm still fascinated that he's still alive in general, with his background, but the fact that he's able to control himself and be alive, just the way he's doing it is yeah, he's doing something right.

Scott Benner 1:08:59
I need to I need to talk to him just so I can ask. Like, what kind of drugs and what were you doing? And like, I'm super I know, you don't want to share his personal information, but like, in my mind is you know, I don't know he's flying on the nose of a jet plane with heroin in his hand. And I'm like, dying to know his whole story.

Heather 1:09:15
But no, he um, like I said, I I really didn't think he was going to make it through his teenage years. I really didn't. And so thankful that he did because he's an amazing uncle. All around to my kids. Just an amazing brother. Okay, yeah,

Scott Benner 1:09:33
that's excellent. I'm glad for you. Well, I I really appreciate you doing this if we didn't miss anything that you wanted to talk about. I feel very good about this episode.

Heather 1:09:40
And I think we touched on pretty much every excellent good

Scott Benner 1:09:45
I'm glad I had a great time talking with you. I really appreciate you doing this.

Heather 1:09:48
I did too. Thank you so much. Sorry about my dogs barking Oh,

Scott Benner 1:09:51
listen, people like dogs they I get know sometimes that people miss my dogs because I moved away from them. So anyway, that's that I liked your dogs barking I

Heather 1:10:01
thought well they still they usually can go with my mom and dad but they How dare them they went to Hawaii for two weeks. So to me the dogs during my spring break so

Scott Benner 1:10:11
enjoy that. Alright All right thank you hold on one second for me

a huge thanks to Heather for sharing her story with us. And another thank you to us Med and Contour Next One. Us med.com forward slash juice box or call 888-721-1514 Are you looking for that? Brand new FreeStyle Libre three, get your hands on it at us med if you're looking for the Contour Next One blood glucose meter look no farther than contour next.com forward slash juice box. You may pay less in cash than you do through your insurance. For the Contour Next One and the test trips. Go check it out

if you're enjoying the Juicebox Podcast, please tell someone else about it. Like your doctor, a friend, a stranger on the street. Anybody really. And don't forget to please subscribe or follow in an audio Apple like Apple podcasts, Spotify, Amazon music, stuff like that. Just go into your audio app search for the podcast, hit subscribe or follow whatever the app is using. I don't know why they all can't just pick one but they can't now I have to say subscribe or follow follow or subscribe. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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