#62 Unfounded Diabetes Fear
D-Mom Lija talks with Scott about life with type 1 diabetes. Unfounded fear, community and way more (I can't list everything we spoke about here or you won't need to listen).
Show notes
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Sam's blog post: 10 Steps To Take After Your Insurance Denies An Insulin Pump Or CGM
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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
Let me just click around here and see what episode we are. Oh, wow, look at this. Welcome to Episode 62 of the Juicebox Podcast with Leah. Leah is the mom of a young girl who has type one diabetes. And she reached out to me and said she wanted to talk about unfounded fear. She said, there's a lot of fear in the diabetes community. And she doesn't think a lot of it is necessary, it leads to a lot of anxiety, it's not necessary. And we started talking about that. And then the conversation just went everywhere. So I don't know get comfortable, unless you're like at the grocery store. And then, you know, look over at that weird guy that's probably following you around, but trying to act like he's not just close your eyes melt in to the warm sounds of the Juicebox. Podcast, nothing else is around you worry about nothing. Although don't drive off a cliff or step off a curb or something, pay a little bit of attention. What's going on? Listen, you know what I'm talking about? Nothing new here on Juicebox Podcast should be considered advice, medical or otherwise.
Lija Greenseid 1:03
Thanks very much to insolate, makers of the Omni pod,
Scott Benner 1:08
the world's only tubeless insulin pump for sponsoring this episode, the Juicebox Podcast. All right, Leah, she comes.
As I put I put the call out, you know, was anybody interested in coming the past, I started looking back and I noticed, I was seeing a lot of titles that were like the CEO of this, this, this ASIC where all the people, so you know, so I didn't want to get too far in the other direction. And some people had ideas, I would like to talk about this. And some people just sort of were like, I'd be happy to talk about whatever you want. But you had a very specific thing you wanted to speak about. So why don't you introduce yourself? Let's talk a little bit about how diabetes is in your life and how it got there. And then we'll we'll talk about what you want to what you want to talk about.
Lija 2:01
Okay. So my name is Leah Greenside, and diabetes entered our lives about two and a half years ago when my daughter ARIA was diagnosed at the age of seven. And yeah, that was it. That was the beginning for us. We didn't have anyone in our family and didn't really know anything at all about type one diabetes. So it was kind of a shock. Do you want the diagnosis story or
Scott Benner 2:29
no? So let's, let's ask some questions. So did you have the classic presentation? Or did you mean, that sort of thing that urination all that or no,
Lija 2:40
no, not at all, actually, which probably is what made it even more shocking. She was a healthy kid running around during summer camp, and then started coming home from camp and just feeling really tired, and kind of lying on the couch. And he's complaining that his stomach hurt and eventually said that her throat hurt and had at one point in time has had strep and had not really had any of the classic strep symptoms. So it was a random Tuesday night, and I decided that this was acting strange enough that I'd take her in. And I've always kind of been hypochondriac for better or worse. So I took her into the local pediatric urgent care clinic. And luckily, we got paired up with a very experienced doctor who did a strep test, and it came back negative. But he said that on the physical exam that he did that her, her abdomen seemed a little more tender than what he would normally would think was normal. So he said, You know, I don't think that she's getting appendicitis. But it could be something like that. Let's just run a couple of quick tests and see if anything's going on. And then he went off, came back in, you know, five minutes later, and said, Well, it's not what I expected, but your daughter has type one diabetes, and you need to go to the emergency room right now. Wow.
Scott Benner 3:59
What was the blood sugar there? You know, it was 316.
Lija 4:04
Yeah, and she her a Wednesday at diagnosis was like 6.2. I mean, it was super, super early. Yeah.
Scott Benner 4:09
Yeah. That sounds like it was very, very much in the beginning. Did you go through any kind of honeymooning stuff where it was? Where you've noticed the pancreas working and not working? Or did that not happen for you?
Lija 4:21
Yeah, no, that definitely happened. I mean, we went down, she started off at like two units Atlantis and got down to a half unit. And her insulin to carb ratio in the beginning was like one for 80. It was a teeny tiny little amounts of insulin that we are using, and, and it was easy, we put, we put her to bed at night at you know, anything. And she would wake up every morning at like 110. And so it was good in that way. But it's also unpredictable. So there are lots of lows in the beginning as well. Do you think
Scott Benner 4:48
it's more stressful when that happens? That will then just then just bang the pancreas doesn't work anymore, and you have to get at it?
Lija 4:56
Well, it's certainly not that we were doing a whole ton of adjusting both you know, or We on reducing the amount of insulin that she needed and then increasing it. So I don't know if it's more or less, you know, more or less difficult than if you're farther along or not, I don't have the better experience to compare to. But it really I mean, she's, you know, she was, she was always you're always chasing numbers, making adjustments, trying to figure out what was going on. And we went on a pump about three months after she was diagnosed. And I I'm pretty sure in retrospect, it was totally coincidental. But I think right at that point is when she started to come out of the honeymoon the most. And so it felt like it was the pump. Yeah. So the pump actually made things, it felt like it made things more difficult because again, you're constantly chasing highs. And we had a pretty long period where we were making regular changes and still dealing with, you know, ever increasing a onesies and just feeling like we were, you know, we never knew what we were doing. So that lasted for a while, you know, I mean, it lasts for quite a while, but certainly for the first six to nine months. It was it was a lot of chaos and, and then things men kind of started to get on
Scott Benner 6:08
top of things, trying to figure things out. And so for me, and I wonder for you, too, is that you start seeing patterns and things and then suddenly, you can make decisions ahead of patterns and things like that. Did you find that?
Lija 6:20
Yeah, you know, one thing that we did, we got her on the Medtronic CGM. About a month after we started the pump. And kind of fortunately, unfortunately, we saw a lot of patterns. I don't think I had exactly enough information to know what to do with them. And so I would make changes based on patterns that, in retrospect, you know, probably weren't really patterns, were just kind of one off, and then then would have to recover from that. And so you know, and then actually, what happened is we use that CGM for about seven months, we took a break, and we went to decks. And that would have been a year ago in November. So we've had, I don't know what 1516 months that we've been using a Dexcom. And that was accurate enough that we then started to see real patterns and figure out how to make some changes. And so since we've been on Dexter a once he has steadily gone down, and we've gotten to a much and and also her insulin doses have kind of I won't say stabilized, because we know that's not true, ever. But they've gotten to be, you know, we aren't making big changes all the time. We're not always chasing ourselves and trying to catch up to how our body's changing. So things have gotten to be a lot better. Now. The last year or so has been, you know, so much easier compared to the first year and a
Unknown Speaker 7:36
half. Yeah, I think I find that maybe the biggest
Scott Benner 7:40
benefit initially with the CGM is, is getting the idea more of how the insulin works. And, you know, and then you can really see if I put it in here, it takes about this long to start working. This is about how fast it starts working. You know, I was speaking with someone on the phone the other day, who was having a difficult time understanding, I was trying to talk to him a little about about Pre-Bolus and timing of insulin. And then I finally I finally came to this idea. And I said to her, I said How old are you? Are you as old as I am? Do you? Do you remember, like overlays and like overhead projectors and things like that in school? You know, and, and I talked about, you know, if you had two pieces, two overlays, and one of them was the pattern of how the insulin worked. And one of them was the pattern of how the food affected you. I said, I think you just need to slide your overlays a little to the left or right and match them up better. And all of a sudden, the person on the phone was like, Oh, that makes total sense. And I was like, oh, geez, great. You know, it just you can't have the insulin working. When the food's not affecting you, you can't have the food affecting you and the insulin is not working. And that's where you get those spikes in the rollercoaster from and no one tells you that when they give you insulin, they don't say hey, no, this takes a while to start working, you know, a different every person different every situation and they just say, you know, count the carbs, inject the insulin, and people who don't have glucose monitor, sometimes think this is all fine. It worked out great. And you know, once you have that glucose monitor, and you can see you can see that sometimes it's not working out so great. So
Lija 9:08
I definitely feel like getting the data through the accurate CGM. And then we I had to be told we had to be told multiple times, you know, that we should be thinking about Pre-Bolus saying, like I read about it. I talked about it with endocrinologist, I think there was still some kind of concern about doing that, and having her change her mind about food, you know, or something like that, that would go that I was kind of worried about the situation of like, oh my gosh, I'm gonna Bolus like three units, which is a fair amount for her, and then wait for, you know, 15 or 20 minutes before she starts eating. Like, what if something happens in between. And it's, you know, over time with being able to trust like that the insulin isn't going to drop her immediately that the CGM is going to give us a chance that you know, my daughter is going to consistently eat what she agrees to. You know that all those things come together that you can get to that place where it can work, and we're still not Perfect at that, but we definitely are doing a lot more people are saying, and I'm certain that that has made a huge difference also in bringing Her Excellency down, I mean, we just don't see, we see the spikes every morning because she often chooses to eat things that are high carbs for breakfast. But the rest of the day, you know, we can kind of get on top of it and, and now at night, I trust you know, the the decks. And actually really I trust her enough to know that she's not going to randomly just kind of, you know, go so low quickly at nights that we can we keep her at a much lower level than we did before. And so that certainly makes a big difference.
Scott Benner 10:32
I think if you stop and think about the sleeping hours, they're free because no one's eating mostly unless you know there's growing and stuff like that that pushes your blood sugar up, but you can get a steady blood sugar overnight. And once you figure out how to keep it steady, eight, nine hours of a of a 90 blood sugar goes a long way to making your Awan see where you want it to be. So
Lija 10:51
yeah, exactly. And we do and we do correct, we will correct even you know, those lower, lower one hundreds, we will give her a little extra distance. You know, if she's kind of in that low 100 range, when we're going to bed, we'll give her just a little bit of a nudge to try to get her down if we can, so that, you know that takes some confidence and, and just seeing that you're not going to end up having to deal with it in the middle of the night later. To know that you can do that
Scott Benner 11:14
you think about it that way, like bumping and nudging the number a little bit.
Lija 11:17
But yeah, definitely. I just didn't think about when it doesn't work. You know, if I do like what I think should be a little bit of a bump. If that doesn't bring her down, then I'm thinking like, okay, is this now something I need to watch? It's like a basil issue that you know, because again, we're still she's still growing. And we still need to be always on top of the amount the total amount of insulin that she gets. But yeah, I definitely think about it as like that bump worked. And it worked more than I expected. And then using that information to make changes.
Scott Benner 11:40
I completely agree. I think your historical that is maybe the most valuable part of this, you know, like artists at school right now. And her CGM says she's 130. And I can't push it too hard, because I want to be able to give a nice Pre-Bolus at in about two hours. But I did give her a text guys like just the tiniest little bit, let's put a little bit of insulin, what if we could turn that 130 into one time, that'd be fantastic. You know, so we're trying for that. But she's slightly older than what you're dealing with right now, too. So we're starting to see, you know, a lot more puberty all the sudden, and it took me the last couple of months to figure that out. I really had to increase her Basal rates, you know, and that indicated to me, because I was I was bolusing way too much all of a sudden, the opposite always trying to correct and I was correcting this correctly. I was like, This is it. I was like she needs a lot more of a basil. And I just, I sort of randomly picked a number that I thought made sense and bumped it up. And it was night and day. And then you know, once it happens, you spend that time kind of figuring out what's going on, you get comfortable that making a change is the right thing to do the change works. And then I beat myself up about it. I said why didn't I do that last month? I know, I know. I know, I let it go pretty quickly. But for a minute. I was just like, geez, I could have done that last month, you know? Yeah. And so I think what I heard you say earlier was that there's there's kind of fear involved in using insulin, which I think a lot of people have, and it sort of leads us into a bigger picture of what you what you were really interested in talking about. So are you would you describe your involvement like with the people online who have diabetes? Is your Are you there frequently? Are you in and out? Or how do you use it? Before Leah answers that and this is not an ad This is a show note in the last episode in Episode 61 saying episode 61 And I'm clicking to make sure yes, Episode 61 is called Samantha is the Robin Hood of diabetes insurance appeals. What a title huh? Anyway, in Episode 61, I speak with Samantha Who is a volunteer insurance appeal. Kind of expert. She's amazing. So if you haven't listened to that, go listen to it. But if you have listened to it, and you want to know more, there's a great guest post up on my blog written by Sam about her she calls it 10 steps to take after your insurance denies an insulin pump or CGM. So if you're looking for more details, some great information you can go to Ardens de.com. Again, the post is called 10 steps to take after your insurance denies an insulin pump or CGM. If it's not on the main page anymore, you can type it in directly Ardens de.com forward slash blog forward slash appeal tell you what I'll even put a link in the show notes. I want to thank Sam for not only being on the podcast, but for taking time to write this hugely helpful blog post. Okay, I asked her how frequently she's involved with the diabetes community online, and she's about to answer.
Lija 14:37
Yeah, so I spent a lot of time on Facebook and then a number of different groups of parents of kids with the diabetes. And I think initially that both fed into gave me a lot of fear. Because I was reading about these rare events and making them they seemed like there were things that were common that I needed to be concerned About, and also just saw how fearful somebody other parents were. But also, that's I got rescued from one of the really big parenting groups, you know, one of the, like 8000 parenting groups, and got invited to join a much smaller group. And that group getting a smaller group of people who were just a lot more confident, a lot more positive a lot, you know, were laughing about when they made mistakes, instead of beating themselves up that, like, you know, I don't want to be too dramatic, but I do feel like I was kind of rescued from these larger groups. And from this mindset in which I was so scared, and so confused all the time. And I started to slowly build up skills and confidence that allowed me to get to a different place. So you know, I think that social media plays can play a role in both increasing the amount of fear that parents have, and also in helping parents get connected to others that can be positive role models. So I've seen both.
Scott Benner 16:02
I think sometimes the when you when you see when you see somebody reacting in a fearful way, and it depends on the place you're in as to how it affects you almost, you know, when somebody's being fearful, and you're a little ahead of them in the process, and you know, their fears, probably pretty unwarranted. Sometimes you think, like, it's easy to like, just like, oh, they'll figure it out, they'll catch up, part of me always sees it and thinks guy wish they wouldn't say something like that, because people who don't know better are going to really could fall into this. And at the same time, like you said, there's, there's so much value that comes out of this space, too, I found out about Dexcom. Online, I found out about, you know, that I could switch insulin online, you know, like, I never occurred to me that, that I had a choice. And I could call my doctor and say, I'd like to try a different kind of insult. I don't think this one's working that well for us, you know, and so there's been all kinds of support that comes that way. There's also a huge amount of support that comes from just people seeing when you see someone struggling the way you are. The reaction, I think that's valuable there is okay, it's not just me, so I can kind of let go of that fear that I'm just doing something really wrong and get at trying to fix this. But when you see, but I think the danger becomes is when you see somebody being fearful, and instead of that giving you that feeling of like, okay, this is normal, I can do this, it gives you this feeling like, Okay, this is normal, I have to accept this. And I have to and I have to be afraid that I do worry. And I realize it's just the it's just the internet and the amount of people who have diabetes who are online, even though it's 1000s that you interact with. It's a very small percentage of the actual community that's exist in the country. But still, you got to think that, you know, it's a sample size, and that must exist in the real world, too. It does. And I know there was something that happened recently, and it's a hard thing to talk about, because I certainly don't want to, I don't want to come down on anybody. I don't you know, everybody should feel completely free to handle their lives with diabetes anyway, they want to but there was a person online, that, um, that it got kind of popular that their posts and it's gotten around and you want to talk about that. Is that right? Or is it? Do you want to talk around it?
Lija 18:13
Yeah. No, I think it's a good example of a perspective house fear can be spread, because I think I mean, do you want to still be name names?
Scott Benner 18:26
No, no, no, not at all. Like, there's, there's a, there's a delicate way to talk around it, because I don't, I don't have any malice for anybody. But But So let's say this, let's say that somebody, somebody saw a blood sugar that was definitely low and would definitely need intervention, but was nowhere near a situation where someone was going to become unconscious or die. And they treated that number. Like they tested and saw that their blood sugar was 20. You know, and the fact of the matter is, the number was more in the 50s. You know, I we don't have a lot of lows around here, but we have them periodically. Arden was sick earlier this week. So there were two days where she had a head cold and I was using, I don't want to over exaggerate, but I was using probably twice as much insulin in those two days as I normally would. And it was still just keeping your blood sugar like 140 like I was struggling to get it to stay there. And you know, in your heart that that head cold when it dissipates and she stops fighting that head cold. Your insulin needs, you're gonna go right back to normal again, but you don't know when that's gonna happen. Right. So maybe the third day of the head cold dinners coming. I Bolus like literally like nine units of insulin where I would have probably Bolus five. Her blood sugar stuck at 163 hours after the meal. It's still at 150 and I'm like okay, well, I'm going to try to get it down a little bit here. She's like, I want to have a snack before bed. So I give her this big Bolus that I think is going to move this stubborn 150 from the head cold plus it's going to cover the Food and don't you know, like, like, quite literally like 30 minutes later, she's like, I feel so much better tonight. And I'm like, Oh, great. And then the next thing you know, I'm like, Well, as soon as this, you know what, I'm still trying to let the like the insulin work because I'm very fearful, her blood sugar is just not gonna move. And I know she's gonna eat some there was some cars and it before she goes to bed. And it just was, it was like somebody walked up and just flip the switch and put everything back to normal. Yeah, and her blood sugar starts crashing down and it's falling. She's like, I feel dizzy. I'm like, Okay, eat this, eat this drink this, like, you know, and she's taking all this in. And she got as low as about, probably. And I'd have to look at the meter to be sure, but I think she was right around 50 When I stopped the down arrow, and it was certainly something that needed immediate intervention. And I you know, if we would have walked away from her and locked her in the closet without any carbs, she would have had a seizure and died for certain. But there was still a lot of time between that 51 arrow down and a dire situation. Right? It would be, and it would be disingenuous of me to tell you that I saved her life by giving this box.
Lija 21:08
Right, right. And I think it does a disservice to everyone who lives with diabetes, to have people who aren't familiar with the disease, thinking that it's like, you know, like Steel Magnolias, you know, that, that that someone is going to just kind of drop and die at any moment unless you save them with a juice box. And because I think then that leads to a lot of fear from those outside the community, which can lead to restrictions, you know, it leads to schools, being concerned about having kids participate in things, it probably leads to, I'm certain that leads to family and friends being concerned about taking care of a kid, you know, if they don't feel like they know what they're doing, they you know, and that the consequences could be that high, they're gonna cause a lot of fear. So I just don't think that that's a positive awareness message to be raised. And I think, you know, I'm really, I really think raising awareness of diabetes is important. And, you know, a number of reasons. But that's not to the negative kinds of messages that like we're moving in and saving our kids lives,
Scott Benner 22:14
that they're these fragile people who are on the precipice of death constantly. And without intervention, they're just going to cease to exist. Because then a sports coach could think, well, I don't want to be involved in that a teacher can think Well, I don't want that in my classroom it. And I think what you're saying is that if you're going to, I mean, if you're going to give that message out that obviously this is the this could be the poor end result of a lot of things went really wrong. Somebody's hearing that information needs to hear the other 20 steps that come before they can't just hear. This kid was about to die, and we saved them. And I think because what you see then when that becomes bigger, like it's a two pronged thing, it's within the community, like you're saying, building fear for people who will have much better health outcomes that they can live without fear, and the outside world for what they what they think, I think the first step inside the community where you're where you're hitting people who have we're living with type one who maybe are very new to it, who are online looking for help, because they're confused, or in that first bit like you were like, I was at one point. And then you get in there looking for help and find out that Oh, my God, a kid almost died and something that had to save it. And now that's how you're going to live. When I can tell you that in almost 10 years of living with type one diabetes, I've never had that situation occurred not that it couldn't have occurred. But with reasonable, you know, with reasonable technology and reasonable understanding, we've never really been close to that. And I I'm I'm the first one to say that diabetes could go wonky out of nowhere on you and do that, you know, and, you know, you might exercise the same way today as you did like yesterday, and it just hits you harder. And the next thing you know, you're passed out. But still, and I know this sounds kind of harsh. Even when you pass out, you're not dead. You're, you're you've passed out, and there are ways to bring your blood sugar back up again.
Lija 24:04
Right. Yeah, and I think that's the thing that's really comforting when I listened to my endocrinologist or others talk about how in the 1000s and 1000s of patients that they have, none of them have died in bed overnight from a random low, you know, that none they've never seen it that they that you know, that kids know that you need to worry about hyperglycemia that that's, you know, DKA happens really quickly. And that is what actually kills kids. It's
Scott Benner 24:33
it's very interesting about that enough. No, it's very interesting that that we're that in general there's a willingness to to ignore the damage that high blood sugar brings because it doesn't bring you that damage right this moment. Because you're afraid of a low it really is. You know, I don't I hope I haven't. I don't want to repeat myself. But you know, we all get in cars every day and drive away and the fact of the matter is that it is isn't a ball speed, if you hit something else, you're probably going to die. But no one doesn't get in their car every day. And you certainly don't drive around 25 miles an hour, you drive the way you drive and you think, Okay, I'm gonna live my life and what's gonna happen is gonna happen. I have to be honest, I don't see diabetes much differently than that.
Lija 25:18
I totally agree with you. I
Scott Benner 25:19
don't want my daughter to die. I'm not saying that. But I also don't want to wake up in 20 years, because she was diagnosed when she was two, you know, I don't want to wake up when she's 30 having her tell me everything looks cloudy dad, or you know, or I can't feel my feet or whatever bazillions of things could end up happening to her because we allowed her blood sugar to be high. So that she couldn't get too low. I don't, I don't think I'm the kind of person who's willing to trade now for later. You know, and or later for now, I guess is what I'm saying. That's kind of backwards. It's an idea. And at the same time, if I would have found social media at the right time in Arden's diagnosis period in the beginning, you could have easily scared me into feeling that way. You know, and it was only because I was lucky enough to bump into the people I bumped into, who said things like, look, my daughter's in her 30s already, and we didn't have CGM and insulin pumps and all that, look at her. There she is, she's okay. She never just never died, her sleep, you know, nothing like this. And I think the other thing that we don't talk about a lot, because it is very unpleasant, is that when, and it seems and I want to, I guess preface what I'm saying. It seems disrespectful to people who have lost their lives to it. I think sometimes even if you just talk about leaving, if you are being really positive about it, but there are people who pass in their sleep, who have diabetes, you don't always know all of the circumstances. Yeah. And you can go over what many of those circumstances might be. But it is not uncommon for a child to ignore their care or lie about their care. And then one night, go into their bedroom and realize their blood sugar's been 700 for two days, and try to take care of it on their own without telling anybody and over do it with the insulin. And then the insulin is what kills them in their sleep. And that is just one example of how that could happen. But you understand that, that's, you don't get the details of that. And with very good reason, out of respect, you know, there's a very good reason why you don't read an obituary and and tell it doesn't say this person, you know, fell off a building walked in front of a train on purpose, like, there's a respect issue there. We don't talk about stuff like that in this society. But at the same time, by not understanding it, it makes it seem like people just randomly die in their sleep. And it's not, it's not all that random, when it happens, I would say most of them.
Lija 27:50
Right. And I think the car analogy is really a good one. Because, you know, we, when we get into the car, we put on our seatbelts, and we follow the laws, and we don't drink and drive, we do all these things to make our chances better, that we're not going to have an accident. But even with that, you know, occasionally sometimes something happens right? And more frequently, for sure, then things go wrong with diabetes management. But the same thing with diabetes management, as long as you're you know, checking your blood sugar, and you're you're dosing insulin and you're doing all the things that you need to do. If you start to feel funny, or the decks alerts or whatever, that you take it pay attention to it, as long as you're doing all those things. Nothing major is going to go wrong. You know, I mean, that's, and I think people when they start to see that freak, they see this message that I'm just an average night or a typical afternoon at school, that their kid was in this terrible situation. And they saw in the share that the kid was low and the teacher didn't react and oh my gosh, I had to call the principal and he ran out and they saved my kid with a jukebox. No,
Scott Benner 28:50
not listen. Yes, exactly. And at the same time, like it's funny, because I'm trying to play devil's advocate. In my own mind, I agree with you. And at the same time, I understand how other people could feel. And and it is, it is scary. And it shouldn't not be scary. Probably if you're not scared of if you're not respectful of what insulin can do. You don't understand how it works. And not everybody has technology like CGM sensing and things like that. And that's understandable too. But at the same time, you know, older people who have come before you would remind you that they didn't have any of these things either. And they're also here to and if and this is horrible to say, but I'll say it is the parent of a kid with type one diabetes. If my daughter has something catastrophic happened to her, and I can look back later and say she was living her life. She was enjoying herself. She was endeavoring and hoping and reaching and this happened. Then I'm going to do my best to think of it as a car accident or something out of anyone's control and if you if it's if it sounds distasteful for me to just muse about out which I wouldn't use the word muse, maybe anyone I invite anyone to go back in the podcast, I don't know what episode it is and listen to one called will hover, because will passed away in his sleep at college while he had the flu, and you will listen to an hour of Will's mom talk about wills life. And this woman has no regrets about the way her son lived. She was thrilled that he was at college, he was the captain of his lacrosse team, he was he was out trying to grab life by the by the throat and take it over. And it is a beautiful message. And you should really hear what she has to say because, because that's probably never going to happen to you. But if you can live with the attitude that Will's mom has your everyone's life is going to be better. You know, it's it's really I don't know if you've heard her, but it's really something to listen to Oh, she's, she's got a perspective and an outlook on life that that all of us would wish for really something.
Unknown Speaker 31:00
I am here to tell you about the all new design for the Army pod, not the pump itself for that company.
Scott Benner 31:07
My Omni pod.com looks completely different. And you know why it looks different? Because it looks a lot better. I'm not saying it didn't look good before. But it looks much, much better. Now. How are you gonna believe me about this, if you don't check for yourself? My new pod.com You gotta go. You gotta look, you gotta bang around a little bit. They got a new logo,
Unknown Speaker 31:28
they got a new font. They got more pictures, it looks like it was designed, you know, recently, not a long time ago. I'm telling you right now, if they're thinking this much about the website,
Scott Benner 31:41
imagine what they're thinking about for the other stuff. And I don't know anything. And if I did, I would have signed like a nondisclosure agreement. So it's not like I can tell you about it. But man, makes you wonder what's coming in the future, doesn't it? I know, it makes me wonder. Anyway, I've teased you enough. My omnipod.com Go, you bang around a little bit. There's a whole bunch of stuff do they can help you find doctors, you can try a free demo pod up at the top there it says try demo pod but a little quick click on that. See what's going on there? How about videos of people who live with Donnelly pod comparisons where you can kind of click on and go look, this is how it would be with Ally pod This is how it would be with other you know, other insulin pumps or other insulin pumps. Even though when you look at this comparison, it seems like maybe there really is only one, there's a whole little section about how long the pod works with Dexcom, you can check to see if you're covered by your insurance, by the way on the pod wants to let you know that the recent United Health Care decision about about insulin pumps does not affect them. So feel free to try out a demo pod and, and get moving my Omni pod.com type that right into your browser, or click the link in your show notes. Let's get back to Leah she's good, right? Oh, my goodness, much better than me, Leah should have a podcast. I'm I'm a mess compared
Lija 32:59
to her. You know, and I have to say that for for. You know, for me personally, I've always been kind of an anxious person. I said in the beginning of kind of a hypochondriac and worried about things that I didn't need to worry about, you know, and then all of a sudden, oh my gosh, my child has this kind of condition that's difficult to manage and add some risks. And it brought out all of those concerns. I've actually gotten to the place now two and a half years later, where I think I'm actually more relaxed about all of life. Because I've learned, I've learned how, what to worry about what's real to worry about and what's not real to worry about. And I've also learned how powerful we are, you know, I know that I'm capable of taking care of urgent medical situations. I know my daughter is I trust her now to be very responsible for monitoring her body knowing when to speak up, if something's going on, and she doesn't feel well. I know at school that, you know, she goes if she goes low that she in class will eat some Skittles and do what she needs to do. And so I think actually having something real, to be concerned about and to learn that we can take care of it and has been really empowering and a good thing that's come out of diabetes for us. And we've had multiple times throughout our journey in which my daughter has gotten anxious about some part of diabetes care. And I have learned a lot about that actually saw taught to a psychologist twice who works with kids with anxiety issues, and I learned so much from her about how to help coach your kids or anxious situations and it's not to feed into the fear and say, Oh, I know that this site changed my throat and let's you know, do all these different things to try to protect you from that pain. It's you know, that's that that will actually just continue to lead to more anxiety. I learned that you have to face it, you have to confront it slowly in steps, break it down, get used to the use to feeling a little bit anxious and move on to the next the next level until you get to that point where you can kind of conquer the fear on your own. And my daughter is so proud now that she can do her decks, her decks and search and that was a huge thing for her for several months it caused caused us so much anxiety, and we'd get it taped onto her arm. And sometimes it would sit there taped onto her arm for like, 45 minutes before, she'd feel like she was ready to insert it, and we'd have tears and bribes and, you know, this horrible place sounds familiar, we need to deal with it. Yeah. And, and with the coaching of the psychologist, we got through that, and now it's a non event, we don't have to, we don't have to, you know, we don't have to put on any cream, we don't have to freeze it, we do have a little reward system every time that she gets for doing it, and that makes her happy. But like, we have gotten through that, and I talked about that regularly with other things now that caused her fear. You know, I'll say this is just like your decks insertions, you know, that this is, you know, you can do this, and you're gonna feel great when you do it, and you realize it's not something that you really need to be worried about. And that has given us again, like, I'm talking about this empowered, sort of feeling that I think, you know, it's something we can take through to so many places in life and is a really positive outcome from diabetes. But unfortunately, some people will get stuck with the fear part of it. And they don't, don't move on,
Scott Benner 36:14
you're making a statement that I hear, I feel personally, and I hear a lot of people say out loud, which is, you know, obviously, I don't want diabetes, but it really has brought something in my life that I didn't expect. And I talk about it, like, it's a perspective, like, I feel like sometimes when things are happening around me, I feel like I'm like a 75 year old guy in a portrait, it's just like, I've seen that happen 94 times, that always ends fine. Don't worry about it, like, you know, like that kind of feeling. Like you've seen bad things happen enough, that you recognize that they're a not as bad as you thought they were, and be much more manageable than you than you gave yourself credit for, you know, being able to handle. And I think your point about like, putting on insulin pumps and injections and shots and inserting Dexcom. And stuff, like it's such a spot on point, I gave someone that feedback in a Facebook group the other day, where they were talking about, you know, my daughter sits there for an hour and crying and what happens and I just went in, I was like, you just do it, just bring her into the room, stick the thing on her push the button, it'll be over in 23 seconds. And even if she cries or goes crazy for a second, it stops right away, because it doesn't hurt. Really, it's the anxiety that's causing all that problem. And you do that a number of times in a row, and then they'll figure out oh, you know what, this really doesn't hurt, like, you know, and I have nothing to be anxious about. It really is. It's such valuable information, like straight from parenting from like, the mid 70s. Like, you know, I talk about all the time, but I can't imagine my father even being concerned with my discomfort, you know, and, and that is a difference in a couple generations removed. You know, if the doctor told my dad, you had to stick this thing in my arm, and that was going to keep your kid alive. I can't even imagine my dad would ask me how I felt about that. Right? And, and so that may not be correct, a correct way to handle things. But there's a little bit of that that mixed in with today's parenting is very valuable. Yeah.
Lija 38:16
I'll say that the psychologist would have a little bit of a different process and just like stick it out and insert, she actually had, she had a different it's cognitive behavioral therapy is what she uses. And so you break down the whatever it is into these steps. So it actually started for us with like, my daughter didn't even want to see the inserter. So the first thing that we had to do was we brought out the inserter all the time and waved it around and laughed at you. Like here's that scary inserter you look at it, isn't it terrifying? To mom, you know, and then the next step was like to open it up and hold it, you know, and she didn't want to touch it. And so the next thing we conquered, and this was like over a week, like between, you know, she was wearing the one decks that we dramatically put on, and then we're like, Okay, we're gonna get this conquered. So that a week from now, whenever it comes out, we're going to be able to get a new one in and not have thoughts. And so then, you know, the next thing was to have like, open it and look at it and touch it. And you know, again, just kind of like, whatever. And so then she knew that the next step I think was like, I don't remember anyway, we'd had her broken down on all the steps. After a couple days of this silliness around the decks when we, you know, she probably was like, Okay, enough, I get it. And the next time we went to do it, I was I was worried that we're going to go back to this bad place, but she was like, okay, just just do it. And I was like, Really,
Scott Benner 39:27
you may have irritated or not being these people are idiots, I gotta stop this. And
Lija 39:34
so instead of it being seen as something that was scary, it was like, she realized, like, okay, my fear is the thing, you know, it's my own fear and I can just let it go. I don't need to have this fear associated with this event, because I know that it is a mildly painful, you know, it's a tiny little prick and it's gonna be over and it's a good thing and I love my axon. And she just switched it switch in her head and not, you know, not everyone's gonna be able to do that in a week's time. This this rarely, but we got some really good coaching. And it worked remarkably well. Yeah.
Scott Benner 40:05
I think that's great advice. And actually, Leah, let's just say right here, nothing you hear on the Juicebox Podcast is advice, medical or otherwise, these are just people's opinions. They're telling you stories about their lives. Nevertheless, that's great advice. And I think that's worth trying, you know, like, it really is, and not everybody. Not everybody parents the way I parent and not everybody has kids who would react to my parent, trust me, they're my, my brother's kids. If I tried to be that forceful with them, they'd curl up in a ball and explode. You know, like, that's not how they are. But But, and maybe it's expectation, or maybe it's, you know, a little bit of me and my wife and my kids, and we all just fit together that way. But, you know, we are definitely those people that you know, I think I've told this story in the past at the end of the fall last year, art and softball season was brought to a to a premature end when a girl who, who looked like she could have been Arden's mother, hit a ball back to Arden while she was pitching hit her right in the kneecap. And like him really, Jake, she went down like she got shot. And while most people were, you know, the coaches and the other parents were like, Oh, my God, oh, my God, I was like, Oh, hold on, she's probably okay. And you know, if she's not, we'll deal with that too. But but I'm not going to run over there and yank her up and let her feel like this is something to panic about. So I could have moseyed onto the field after the coach went out. And he's like, we should do this, we should do that. I said, Hold on, hold on. She's 11. Wait a second. I said on what do you want to do? You know, and she goes, I want to just get up and try to pitch some more. And I was like, okay, so she's got tears on her face from the pain. She's pushing them off, she finished pitching that inning, she hit in the next inning, ran the bases, came back out, pitch the following inning after that, and then she looked over at me gave me the sign like that's it, come tell somebody I'm done. But, you know, she later we later had to take her for X rays. And they weren't sure if it was a growth plate or a hairline fracture in her kneecap, but it was swollen and stiff. And the pain was bad enough for a week afterwards that it drove her blood sugar's up, like the adrenaline and the cortisol from the pain was was bad. So she was really genuinely hurt. But I've, I've my wife and I have raised children, who would I think, get shot and try to stand back up. And I think that that's, for me, that's valuable. I think that's good. I think it translates really well into diabetes. And we've just sort of brought that idea into it, which is just keep going, it's going to be okay, trust me, if it's not okay, you'll know, because you won't be able to get back up. And then when you really require intervention, we certainly will get it to you absolutely immediately, you know, we're not going to let you lay there on the ground. But at the same time, why don't you try before we give up. And, and I think that's and I but at the same time, I loved what you said about the about sort of demystifying the device and, and creating, you know, a feeling of it just being ridiculous. And that's fantastic, too. I think I think whatever works for you is fantastic. What's not fantastic is sitting in your kitchen, for 45 minutes going, please just push the button, please, please, I can't take this anymore. Stop you. And while she's crying, you don't understand how much parents that that's not valuable.
Lija 43:26
Another thing I think, is that there are professionals who can help you know, your endocrinologist can help you can find psychologists that can help if your kid is having anxiety, or if you as a parent are having anxiety, like there are people whose job it is to make this easier. Like there are wonderful parents online who you can also consult with but they're not medical professionals, and sometimes their advice is, is not good and maybe not right for you. So, you know, find if you're not happy as a as a parent with a kid with diabetes, like find somebody who can help you.
Scott Benner 43:58
Yeah, don't just sit. Yeah, and your point about online too, is such an interesting one because you can post something somewhere and say you get seven responses that are varying, it's actually possible that the right answer for you is in those seven responses. But how do you choose? How do you even know because you don't know if you knew you wouldn't be there asking and so now one person saying try a one person's trying be one person says try orange and one of them's right and how do you know which one and so you know, it's it's not the best that's not the best way and sometimes let's say this to sometimes your doctor might give you an idea that's not the best way but like keep trying like keep looking for something don't just sit in the because you're going to build something worse if you spend a year of that kid panicking about something or a year with you feeling depressed about it or something you know that's that's going to create more more issues just keep looking for help anywhere yeah, yeah, don't get you're
Lija 44:53
waking up two or three times a night to check their blood sugar because you're scared they're gonna go low, you know, and and that that's gonna affect your your life, your whole family's life. I mean, sleep deprivation is not it's not good talk to somebody talk to your endocrinologist, do they think that you need to be doing that, and if not work with them to figure out a plan so that you feel comfortable to try
Scott Benner 45:11
to make the blood sugar stable in a way that doesn't require that or at least makes it less likely? Or? Yeah, I listen, I completely agree. And at the same time, you know, when I'm when I'm adjusting blood sugars and trying to make them right, and I have overnight problems, I mean, there's been nights that I've been up, I'm sure we all have way too late or way too long, up and down. And, you know, I I've spoken about it before I wrote about on my blog, but that kind of exhaustion changes everyone in your family's life, and you don't realize it's happening. It's like, it is genuinely like becoming addicted to something, you know, as as it happens to you, it happens so slowly and gracefully in the background, that by the time you're grabbed by it, you can't escape, and you may not know you're there. And that's how I felt when I was really exhausted. You know, I didn't realize how bad off I was.
Lija 46:03
Yeah, I remember listening to you talk about that. I thought that was really interesting. But you noticed such a difference. And you had a week off, isn't that what happened?
Scott Benner 46:10
I went away with my son for baseball, and three days asleeping later, and I was like, oh, here I am. Like, I remember me, you know, and, and I didn't know it wasn't me. And that's tough too. Because when you find yourself, you know, arguing more with a spouse, or being more short tempered at work or whatever it ends up being, we have a very human reaction that when somebody disagrees with us, we really do imagine it's their problem, not ours, you know, like, and it's hard to live like that you can't, it would be debilitating, to walk around thinking you were wrong all the time. So I think it's sort of a human reaction to believe in yourself. And so in when you're disagreeing with somebody, or when somebody's pissing you off, you always think it's them. But it could just be you need to sleep, it turns out of you just don't think about diabetes for 48 hours and sleep, you'll wake up and be a rather lovely person again, so, you know, good. So okay. So, you know, diabetes and fear do not have to go together. And if you are in a situation where you are fearful, it is very possibly take it from somebody who's you know, pretty, pretty capable of keeping blood sugar steady and stable. If you are in a place that that's happening, you probably just need to make adjustments to how you're using insulin and food and things like that. And you can find a space. That's the other problem is when I talk to people, privately, it's been so long, and the information they've gotten is so bad, whether no matter where it comes from, they're so lost, they started believe this is just what it is, and that they can never get it back. They can never find a way to where you are. And I don't think that's true. I do think it's hard, especially if you're not getting good help, but don't stop looking for that good help, I guess.
Lija 47:58
Yeah. Yeah, that's, that's, that's, you know, it's easy to get complacent, and to just let numbers get out of control. And, you know, sometimes you just need a break. And I can see where you just don't want to be thinking about it. And you don't want to be keeping numbers in your head. And that's fine, too. But I think, you know, if you've gotten to the point where things are out of control, or the agency isn't where you want it to be, or you're having lots of highs and lows and your life because of that is chaotic, you know, there are ways you can get out of that hole and find out somewhere. Yeah, and it won't always be I mean, that's the beautiful thing about about diabetes, you know, there's all of this where I know, when I was in Australia, they had some saying about, like, if you don't like the weather, you know, just wait for an hour, and it'll change kind of like diabetes like and even if it's good, or what either way, if it's good or bad. It's gonna change. But you can help to make sure that those changes go and kind of more of a positive direction than in the negative so that you are then in a good place for when your kid gets sick, or, you know, all these other things happen that are going to make it be harder for a while.
Scott Benner 48:57
And I do want to say this too. I think that there is an intrinsic value in the struggle, much like most of life, you know, I just, I just got done saying to my son, last night, my son plays baseball his whole life. He's a sophomore in high school now. He's a really good centerfielder. But he's a kid you need to see play. Once you see him play, you're like, wow, that kid's great, like, leave him right there. But he doesn't show well in the beginning. And I don't mean these poorly. It's just there's something about him. You don't look at him immediately and go oh, centerfield. It just for whatever reason. So what happens to him every year as he shows up? He's evaluated as not a centerfielder. It takes a few games. And then they go oh, my gosh, what I do they move him into centerfield. We play centerfield there all year. And it happened. I'm not just saying once or twice. This happens to him every year. And so this year, I think he got it into his head. It wasn't going to happen, that they were going to finally believe in him and now and everything and it happened to him again. And I pulled him aside and I said look you I said, When you watch a movie about a real person who's succeeded in life, or you read a book about somebody who's had real, you know, a real, just transformation and something to be celebrated to happen for them, their story is never, I showed up, I was tall, and I was handsome, and I was strong, and everybody heaped gold on me. And I'm a winner. I said those stories, even if they exist, or not true, sometimes. And mostly, they're not interesting. And they're not the way that people get to the end, I said, the struggle is where it comes from, I said, what you're considering today, to be a problem is something you will look back on in the near future and see it as a building block or as a learning situation. And I really do think that works the same way in diabetes, as much as it sucks for your kids blood sugar to be all over the place. If it doesn't bounce up and down, then you can never learn what made it bounce up and down. And if you don't, if you don't know what the monster is, you can't control it really, you know, so it sucks in the moment. But if you stay focused on the information you're getting in, eventually, all that historical information becomes the way you manage. And if that makes sense or not, but
Lija 51:15
yeah, absolutely. And I think also, you're kind of touching on the idea of resilience. And you I mean, I feel like diabetes has given us this opportunity to help my daughter and actually our whole family to become resilient to have an actual hardship that we have to deal with, regularly, and overcome it and have successes and feel confident that we can do that. And I think I've thought about that a little bit with anxiety, but I think it's broader. And that, again, is one of those blessings that comes out of this disease, that for some of us, I mean, there may be people who have lots of other challenges and are, you know, I have other things that are, are even harder than diabetes, but for, for me living a comfortable upper middle class life and in St. Paul, Minnesota, you know, this has been the hardest thing that I've had to deal with. And, and because of that, it's given me a chance to grow the most that I think I have in my life. I wish my daughter didn't have diabetes, absolutely. But I think for her, it's also going to be something that is going to give her so many strengths. And, and for that, you know, I think I can see that as, as the good that comes out of the bad and every good. And other things I know now to that there are other times in our lives where bad things will happen. And you can choose to either do the natural reaction, which is to kind of wallow in your pity and feel really bad and, and to have things feel terrible. Or you can decide to figure out how to make things better. And it's hard. But you can do that. And you can find help to do that. And
Scott Benner 52:49
yeah, what you learned from living like this, it does translate into so many other parts you have I had a fender bender, like last month, and I was the one person standing in the street. Like I wasn't really involved in it. I was just like, alright, so I guess I'll call that auto body and I'll take my car over and I'll fix it. I'm gonna have to pay a copay or we're gonna definitely I think it's a, I call it a copay, I pay my dad pay my deductible. And, and then they'll have the car for a couple days, and they'll give it back and it'll be okay. And all right. Yeah, I don't even think my heart rate was elevated. Because Because because, you know, I've been in actual dire situations before, you know, I spend a lot of time injecting a medication into my daughter that potentially could end her life. If I use it incorrectly. I'm not going to be upset about our bumpers, you know, like, it really does. It's everywhere. Like, don't you feel like you're walking around a little bit like John Travolta in Saturday Night Live sometimes like, like, Saturday Night Fever is what it is. And so it's, you know, it's sort of like, you're just you're just, you're just seeing what's going on around you in a slightly different way. Are you know, that that kind of struck thing? It's hard to strike when you're exhausted, obviously. So it gives you perspective, it really does.
Lija 54:04
It does. It makes you focus on what's really important. And not to worry about the little things that don't matter. And, and I think also for us, as a family, it's given us a chance to look at like, what do we really value and how do we want to live and we've made some major adjustments since diabetes is kind of our lives that have been for the best. And, you know, we were on this path of two working parents in kind of stressful jobs and, you know, just doing all the things that felt like the right things to do and just got thrown into the mix. And we have changed our lives in ways that I think in the end are going to just be put us on a different trajectory, and it's a really good one.
Scott Benner 54:45
I thought I would be back to work. years ago, I've been a stay at home dad now for 16 years. I have to admit that after I imagined after our last child went to school that I would get back more into the working situation. But my wife and I think it's important for me to be a local while Arden's at school and things like that, excuse me, and, and so I don't just sit here and stare at the walls, I wanted to fill my time with something and, and you know, it's it's a good example it's you know, I would not be able to this doesn't get said maybe enough at all. But if you're enjoying the podcast or it's helping you in some way or my blog is of some value to you, it really is in large part due to my wife who goes to work every day and pays for my house and says to me, You know what I see you spent a couple hours on this today, it's cool, you know, I do wish you would have repainted the kitchen, but all right. And you know, like, I see, it's, I see it's a value to people and I don't want it to, you know, I want to help facilitate it too. And so chiefess you know, if you're helped by this, what you don't realize is, you're being more helped by my wife, who you've never met and will never speak to, then you are by me almost, you know, because I can't be here without her. And yeah, and it sounds like you're doing the same thing. It sounds like you guys adjusted your perspective of what is success in your life? You know, is it just stuff and things and money? Or would it be better if one of you was around more often? Or, you know, that kind of stuff? I completely agree. It's, you know, we've said it a couple of times, I certainly would take a magic wand to to make the diabetes go away for all right, but since that's not going to happen, don't ignore the good stuff that comes out of it. Yeah, absolutely. Look at you, you're fantastic at this, you're actually much better than me, I need to get you off here before people realize they should be listened to the LEA podcast.
Lija 56:39
No, no, no. But you know, it's just it has been, it's, I'm surprised at how much I've learned and grown and grown over the last two and a half years. I never would at first, when diabetes first entered our lives, I really thought that that was like, that was like the end. But it just felt like everything was crumbling and falling apart in this negative way. And, and through and really it's you know, talked about the importance of social media, it is through things like podcasts, and blogs, and Facebook groups. And these amazing mentors that I've met online, who showed me encouraged me to move in a different direction. And we're lucky that we're able to do that.
Scott Benner 57:21
Because everyone doesn't have an innate resilience. And that's not a dig at anybody, it really isn't. But when you get hit that hard, emotionally and physically and mentally, like you do during the diagnosis, it is very easy to get knocked over by the thoughts. I mean, I'll never forget walking out of a carb counting class in the hospital, maybe day two. And my wife says, we stopped in the hallway, and she looks at me She's devastated. And she says, Will art and be able to have babies? And I was like, I don't know. And I looked back at and I said, are we going to get divorced? Like, like, is this going to be something that like, ruins us, you know, and like, that's where my mindset was in that moment. That's how terrible everything felt. And now listen to you describing perspective. And, you know, and at no one that that did not occur to me at the time. And I don't honestly know, if after the carb counting class, if someone like you or me would have walked in the room and said, Listen, I know right now, this is how it feels. But very soon, it's going to feel like this. I don't know if that helps or not. But that is genuinely my message. Most of the time, I say all the time, that as far as lost as you feel right now in the beginning, you will not feel this way for long, it is certainly goes away much quicker than you anticipate while you're in it. And and it's a plateau that is really valuable to get to. So don't give up get to it. You know, because when you get to it, you're going to be able to look on this and, and you'll be a different person by then. So no, no, no. Now I've been myself out you send your email, is this topic going to be a bummer? And I was like no, but maybe it is. It's not
Lija 59:01
positive, I do think the message is positive that that we that we all we do more than just survive this, you know that you get to a place where you can actually let this be something that's so positive that you're that your family learns good lessons or kids learn lessons, you know that you all become stronger, and gives you that chance to do something great. And then also to contribute back, you know, I have to say that I've become active with with JDRF and other organizations. And it feels really good to be able to do something to contribute to a cause that's beyond us. That will help so many people. So I think it also provides you opportunities to become involved in this greater community of committed people who are all working to make the world better. And that's been a huge positive thing for us too.
Scott Benner 59:50
I just had a conversation very recently this week where I'm trying to get someone interested in by someone I mean someone who can bankroll it. basically interested in the idea of this podcast, this, this kind of conversation happening in front of like real people in a in a venue, right? So where it can help more people at the same time, and people who don't have access to the internet or don't know about it or that sort of thing. And I keep bumping into the last same wall, which is, no one wants to go out on a limb, like, you know, so you know, you can, on a podcast situation, you can say, Look, this is not medical advice, please talk to your doctor. And you're a fairly covered when you say something like that. But people who can really afford to bring that message to a wider audience, they don't want to get sued. So they won't really get involved. And, and I tried to make the point to a person the other day, I said, Look, you know, they made a very eloquent statement, like, We can't risk saying something, because diabetes is not one size fits all, we can't risk saying something that may hurt somebody. And I said to them, I find it interesting that you're willing to say nothing, which hurts everyone, because of the fear that saying something which will help a ton of people may hurt one of them. I was like, they're all already hurt, you know, like, like, you, somebody's got to go out on a limb, somebody's got to take this information that they've been able to, to pull together over years of experience and be willing to go tell it to somebody else. Because because it's criminal to know things like simple things, like the timing of how insulin works, and not tell somebody out there, somebody's kid is going to go have lunch in an hour, they're going to eat, wait till the kid finishes eating, give him his insulin, his blood sugar is gonna go to 350 it's gonna stay there for two hours, and they're gonna go, that's the best I can do. It's what I was told. And you know, and they're gonna have that whole experience. They're gonna know deep in their heart. That's not right, the stress and the anxiety is going to build up in the parent, the physical harm it's doing to the kid is what it is. And you're telling me that we can't explain to them how insulin works, because, because why? Because you're afraid. And somebody's got to take a risk. And somebody's got to do the right thing. At some point. You just be a good Samaritan. I think, you know, and, and good for you for getting involved. That's excellent. Yeah, you find it fulfilling? Like giving back does it? Somehow?
Lija 1:02:27
It does. Yeah, absolutely. And I, and I wish I could do more. And I'd like to do more. And I'd like to bring this together with my professional life as well. So I'm trying to figure out how to make that happen. It's certainly, you know, it certainly has changed. Maybe it's changed my focus, and I'm very committed to doing it. But I think what I think will you describe and maybe the way you're, you're talking about like the podcast and like your wife contribution, I think it's, it's, you know, there's a big things that we do, there's a money that's raised, there's, you know, books that are published, but then there's all those small conversations that happen, either, you know, over coffee, or in a Facebook group, or something where those kinds of conversations can actually have a huge impact. And I think that's been really, the essence, those, some of those little things have made have made me feel really good. Like, just being able to talk to a newly diagnosed parent and help them to let go some of some of their stress is makes me feel really good. Being able to give like, I donated a whole bunch of lancets to somebody the other day, who we moved to a different lancing device and we had you know, and I couldn't believe that there was actually somebody in the United States who was like, hoping that you know, needed these freelance as it breaks my heart, I have to say everything about the cost of caring for diabetes is a totally different and horrible topic. But you know, the fact that I could fail a whole bunch of lancets to somebody and and have her feel grateful. I was like, it's a small thing, but it's like, I feel like all those things add together. And I love the diabetes community, because there's so many of us who are part of it and are helping each other and making things better and and that is fulfilling that
Scott Benner 1:04:06
it's hugely necessary. And I feel like I want to say before we're done talking that I know in the middle, we talked a little bit about sometimes you get bad advice, or people are such bombers that they kind of dragged you down into it, that kind of thing. That's not the overwhelming feeling. It's just something to be aware of, if you're a person going into it, please don't get drug into the drama and the sadness and the fear because there's such a ton of people who are the complete opposite of that who are who are great information and sunshine and huge forces in the world. Those are the people you want to gravitate to. You know, I think in the end, we probably just spoke for an hour we could have just said that but okay wouldn't have been as fun some discussion. Yeah, exactly. All right. So yeah, I'm we're right at an hour. So people tell me they don't like it when it goes much over an hour and I listen. Anything else? I was a little bit Oh, not at all. Oh, good. I love the rambling don't don't I think that's what podcasts are just listening to people. So if I told you that most of the feedback I get is, I love your podcast because of the conversational nature of it feels like I'm on the phone, listening to people talk and they don't know I'm there. And I really I get something out of that all the time. Not that I have anything against that more formatted structure. It's just, I don't think it lends well to who I am. And so, you know, so we'll just keep it where it works. Yeah, every dirty word unless you unless you call me like an hour from now. And you're like I said something completely terrible. I need you to take out but even then I'd probably try to talk you out of it. So because you didn't say anything bad. You were fantastic.
Lija 1:05:42
Thank you. It's been a pleasure talking to you.
Scott Benner 1:05:46
Thanks again to insolate, makers of the Omnipod, the world's only tubeless insulin pump for sponsoring this episode of The Juicebox Podcast, my omnipod.com, check out the new design, do it get over there, click on the demo thing at the top. There's links in the show notes. Don't forget also, the guest posts from Sam about insurance appeals is at Ardens de.com, forward slash blog forward slash appeal, or links in your show notes. Again, if you're enjoying the Juicebox Podcast, and my God, if you're not, why did you listen to the whole hour. But if you are, and you can take a second to go to iTunes and leave me a beautiful rating and a review. I would really, really, really appreciate that.
Unknown Speaker 1:06:26
Thank you very much. Boom, boom, boom. What else? Oh,
Scott Benner 1:06:31
let me get you a little excited about what's coming up in the Juicebox Podcast. The next two episodes are going to be conversations with people who have written their own algorithm for their own artificial pancreas and are using it already. It's an open APS story about open codes. And I don't even I'm not I don't I'm not geeky enough to understand that all but people are just like making their own artificial pancreas isn't there working? Tell me you don't want to hear about that. Come on. Next time on the Juicebox Podcast. Hey, just a real quick sort of technical thing about listening to podcasts. I can see where you're all listening from. And by the way, podcast has hit and exceeded and gone past 60,000 downloads. So thank you, but a lot of you are listening online through browsers, which is cool. Do it if you want to. But you know, they make these little apps, right? Like these little podcast apps. You know, iPhone users, it's already on your phone, just you know, go into it and search for Juicebox Podcast and hit subscribe. And by the way, Android users we're on Google Play now. So you know, you can listen like through your little eye. A lot of you have these phones, right? I just all right. Listen, I'm just saying you don't have to listen on your computer if you don't want to. I don't care how you listen, personally. You can do whatever you want. I'm just thrilled you're listening. I'm just saying you know you can't take that computer to the grocery store with you but the phone pretty portable.
#58 Faye and the Diabetes Community vs Humana
Oh the in-Humana-ty!
Hell hath no fury like a D-Mom scorned by a greedy insurance company. Listen to Faye tell me about how she fought back and won when Humana arbitrarily decided that her two year old daughter didn't require and insulin pump and continuous glucose monitor. Spoiler: The Diabetes community was there to help when Esme needed support.
Esme is adorable!
Get a free no obligation demo today!
#56 Joan is a D-Mom
Joan became a D-mom to her grandson when her daughter suddenly and tradigaclly passed away. Her's is a story very worth knowing.
Nothing further needs to be said...
Joan will reference this photo as she tells her story...