#348 Navigating Bureaucracies with Type 1
Melissa is a teacher and a T1 mom
Melissa is a teacher and a T1 mom whose daughter was heading to school for the first time with type 1 diabetes. She was looking for someone to talk through what to expect and was kind enough to allow that conversation to be recorded.
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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, everybody, and welcome to Episode 348 of the Juicebox Podcast. Today's show is sponsored by touched by type one. And the Contour Next One blood glucose meter. I'd like you to go to Contour Next one.com Check it out, really look into what this little meter does. I love it. Arden's been using it forever. It's fantastic Contour Next one.com, you may be eligible for a free meter, you'll find out there. And of course touched by type one, the greatest organization in the world, my opinion, touched by type one.org go see what they're doing for people living with Type One Diabetes. Okay, this episode's gonna take a tiny bit of explaining. It was recorded in August of 2019, with the intention of putting it right out for the beginning of the school year. And then that didn't work out right away. I wanted it out because it's really good. But I couldn't make the timing work. Then I thought, oh, I'll just sit on it. Like, I guess my idea was to put it out like midway through the school year. And then people could have some time to, you know, ruminate over the ideas before they went back to school. And then the coronavirus happened. And I sat on it again, because I thought Are people going back to school, I don't even know. And now I wish I didn't do any of that. Because as I listened back to edit this, it's so much more about advocating for yourself than it is about school. In the middle of the episode, we go off of school for a minute and talk about looping. And when we do that, you're going to hear my initial thoughts about looping, which are of course, now almost a year old. I think you should find the other looping episodes. If you find that part interesting. 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. or becoming bold with insulin. I'm excited because I don't really remember why we're doing this. And I love those.
Melissa 2:02
Why originally wrote in about how the school I'm a teacher, myself, and how the schools vary in the level of care that across, you know, even the county where I live and across the nation, I'm sure across the state. So I just think it's really interesting how there's like a streamline way of how they handle diabetes in school.
Scott Benner 2:25
Cool. Listen, you've just done the entire setup for the show. Thank you.
Unknown Speaker 2:29
Yay, you're welcome.
Melissa 2:32
My name is Melissa cat. I have a seven year old type one who was diagnosed when she was four. We luckily caught it before it became too extreme, I guess you could say we actually would never were admitted to the hospital. We were just given a syringe and a vial of insulin and taught you know, a binder of stuff five hours and sent on our way. So we learned a lot. I learned a lot on my own. And here we are two and a half years later doing you know pretty well, I would say it's amazing. Yeah.
Scott Benner 3:13
Let me orient my brain. So tell me, tell me one more time your daughter was seven.
Melissa 3:18
Right? She is 774. Yeah, at the time
Scott Benner 3:22
for seven, three years. And her name is
Unknown Speaker 3:25
Chloe. Chloe. All right.
Scott Benner 3:28
Interesting that they, too, they never admitted you at all?
Unknown Speaker 3:33
No.
Scott Benner 3:34
Tell me about the process of the teaching? Did they literally send you home right away? Or did they sit you in a room for a while.
Melissa 3:40
They sat in a room for a while. So we went to the pediatrician for what I thought was a UTI. My mom suggested that I test for diabetes, because she kind of did a little internet research and some of her symptoms led to that. Thank god she mentioned that because I don't think I would have ever asked the pediatrician I course better or had her drink an entire juice box before going in so that she would go to the bathroom and God in there, tested her blood sugar. And she was forced 68 the pediatrician at the time kind of just looked at me got up and said I need to call Children's Hospital. We're close to Los Angeles. So he said I need to call Children's Hospital. I'll be right back. He laughed. I kind of sat there for a few minutes not really understanding what was going on. I ended up getting up and leaving. I took both my girls and we left. We went about her day he called me and said where are you? And I said I'm going to the mall. And he said well, you need to go get blood work done. So we stopped at a hospital got some blood work done. I just didn't understand the severity of what was going on at that point and no one was really saying anything. So um, he was trying to get us in to children's hospital because he had no ketones. And they weren't super worried about her. They It was a Monday. They couldn't see us until Thursday morning of that week. So Thursday morning at 5am. We drove in, sat in a small room for about five hours with a diabetes educator who herself was also type one. And, and she literally went through a binder of information. And like, I think the first thing she did, though, was really hand me a syringe in a vial of insulin and said, Here you go, you got to do this. And I was like, What?
Scott Benner 5:32
So now I have to ask the question that I'm imagining everyone listening is thinking, you're in the the office. The blood sugar comes back, the doctor doesn't communicate well says I have to call Children's Hospital leaves the room, and you literally pick up and walk out at some point before he comes back.
Melissa 5:53
Yeah, I just I didn't I, I, I he didn't say I needed to hang out. I I honestly did not understand what was going on. You know what I mean? I mean, he said he had a called Children's Hospital. But I didn't. I don't know. I guess it just didn't register to me. Like I said, the severity of it. I mean, she seemed, I don't know, I just really didn't get it. And the ironic part is, I had a friend from high school who I knew her daughter was type one. And I know she had gone through a lot just with finding out of that. And I, I just I don't know, I guess it just didn't resonate. I think maybe I was in denial. I don't know, I really don't know. I don't
Scott Benner 6:29
know what I was thinking. I can't I can't decide. Obviously, I wasn't there. But I can't decide if you just like disconnected his statement from you. Like you're like, oh, that he's got phone calls to make. We're done. I gotta go. Or Yeah. Or if you were just like, Okay, this is terrible. And let's get out of here. Like, I
Melissa 6:47
know, I don't, I feel like I don't think if I don't feel like in my heart, I felt like it was really a terrible thing. I just thought, Oh, she has type one diabetes, and now she's, you know, going to need eat differently, or I just didn't. I didn't understand it. Um, and yeah, I don't know. I think
if I was scared, I would have stayed. Yeah.
Scott Benner 7:09
No, I'm not trying to paint you as like, you're like, yeah, better things to do than this? No, I'm not saying that. It's just amazing that, that he wasn't able to,
Melissa 7:20
I don't know to impart upon you what was happening Exactly. Like, do you think it took him by surprise? Yes, he was actually my pediatrician too. And to be honest, when the number came up on the meter at the office, I could tell by his face that he was you know, disappointed or Yeah, concerned. And I had my oldest daughter Avery in there who is definitely was was really worried and kind of freaking out herself about even just the finger stick, you know, and, and so I just think it was an overwhelming thing. And he had said to me, it's presenting itself as type one. Diabetes, he didn't actually say, this is type one diabetes. Um, so I just kind of felt like there would have been a I don't know, I don't know what I
Scott Benner 8:06
guess I've recorded about 300 of these. And you have finally said something completely different than anyone else has ever said. I usually people stories are fairly keto, simple. Yeah,
Melissa 8:16
I get it. I get it. And you know what, and that's what I kind of feel like, I am, yeah, I had that. I left I got blood work. You know, the Children's Hospital wouldn't, you know, couldn't see us. I have a neighbor, ironically, who also has a type one daughter who was a little bit older. I rarely see her because she's a nurse. She works at night and sleeps during the day. And so I happened to run into her The next morning, and I said, Hey, can I talk to you? And she said, yeah. And I said, well, the doctor said that, you know, Chloe is presenting with type one. And she said, What do you mean? And she's like, Can I come in and have, you know, a cup of coffee could be talk and from that, that's when I think it all kind of hit me. You know, she just because she cried immediately and said, I'm so sorry, you're going through this and you're like, why? Yeah, that's good. Totally. And she just said, you know, things can go from bad to worse really quickly. And so I mean, the the pediatrician and said, you know, to feed her low carb stuff to not give her anything that you know, so I was giving her low carb meals. I mean, he had given me some pieces of advice. He was really frustrated with children's. He didn't understand why they weren't weren't able to see us, but I don't think they felt like she was as high of a risk. I don't know. I don't really know what they're,
Scott Benner 9:35
and I realized that's a busy part of the country, but in my mind, hey, we're diagnosing someone with Type One Diabetes, they go right to some sort of informative care situation Right, right. Or even presenting with any you know, in the moment health risks, but not to say that a for something blood sugar is not a health risk, obviously, but right. That's fascinating. What she honeymooning or was it Yes, she was so she'd bounce. Yeah. In the beginning,
Unknown Speaker 10:01
yeah, you know, we got there they tested her at Children's Hospital they tested her she was at and they looked at me and they said, Did you give her insulin? And I was like, No I don't even have insulin. No I didn't and then so then that at that moment, I thought, Is this a dream? Like did they diagnose something that isn't real you know and so unfortunately they said no, she does have it you know and and then from that moment on she they gave us pretty I mean, I feel like they should have told me I needed to bring sugar you know with me to the hospital because I live about I mean, about an hour from children's hospital but you know, you know, LA traffic Yeah, could be three hours so i i really all I was thinking was they're gonna put me in a car for three hours and not let me have any sort of sugar to like, you know, help her because she crashed the first insulin dose she crashed pretty hard she didn't really need in fact we didn't even end up needing long acting for you know, a few months so well that's a tough time I mean, the honeymoon time is is crazy. There's a lot here to unpack and and I know this is what we're really good at. I know so I just think it's I get your your cuz you have hindsight frustration right now you know more about diabetes. So you right, look back on that moment and think like, how is this possible? This is what you said to me or send right home like that's, you know, count your carbs put in your insulin. Right? No, possibly it might not be necessary all the time. And I don't even know how you would, how you would communicate that if that was the case. Like that's why honeymooning is such a crazy, you know, like time, you know, just to need insulin so badly one day, and four hours later at the next meal not needed is is is maddening. It's very much as it is. And I remember reading somewhere that someone said that it's almost better when they're not honeymooning. So at least you know what they need, you know, like, you kind of can guess what they need. You're not, you know, though,
Scott Benner 12:06
yeah, there's a lot more consistency that comes when the pancreas just gives up. Yep, yeah. And stops and stops making random insulin. Okay, so, so, so she's not a school aged kid yet at that point? Not yet. Right? Nope. And so how long between diagnosis and kindergarten?
Melissa 12:23
Luckily, the summer she was diagnosed in February, she started kindergarten in August of that same year, so I have this summer to really get my act together.
Scott Benner 12:33
Did you and how much of your act Did you get together in that time? Like what was your What was your like? Like, I guess I should ask real quickly. Are you using MDI still
Melissa 12:42
know you know, we're looping. We've been looping since May. But I requested a CGM. With the after the first meeting at Children's Hospital, we had a dex calm within a month of being diagnosed. Gotcha. Luckily, so that was amazing. I actually, thank God for that. And then we were MDI for about six months after that, and then we got the Animus pump before she started Kindle. That was my goal was to get her on a pump, at least for kindergarten. And then of course, months later, we find out animus is no longer so we are now using the Omni pod.
Scott Benner 13:19
Gotcha. It's funny, I had the same exact feeling like Arden was diagnosed when she was two. But in the run up to kindergarten, I thought I can't send her to school with needles. Well, I don't know why I thought that at the time. It's just how it struck me. I was like, I'm not letting some like random nurse like poke my kid with a needle. Totally. Yeah. And it's funny. Now I look back. I know those people because they live in my town. And they, you know, it's, I probably would have been fine. I'm sure it would have been fine. Yeah. Yeah. But in the moment, I just thought, well, this is not okay. Like, I just, I don't want her to have to let someone else give her a shot. And, and so we we went to the Omni pod. You know, when Arden was like for getting like, ready for when she was five and going off to school. But um, so she gets to kindergarten, your daughter gets to kindergarten, right? And is the is the integration as seamless as you were hoping.
Melissa 14:08
Um, you know what, I think that was a little I was a little naive in that part too. I myself actually teach kindergarten. And, and I we have a really great school. I didn't initially have a 504 I just kind of went in thinking like, oh, everyone's going to take really good care of her and they've got a plan that this she's not the first type one and get an amazing kindergarten teacher who followed her on jacks. I did request that the health tech follow her also i think that you know, I am in the middle of teaching, I can't stop and like say, hey, she's dropping fast, you need to do something. So, um, it was seamless until about January, everything seemed to be working just fine. And then they just I might our health texts, we don't have nurses at our site. We actually have a One nurse for about 4500 students in the district where my kids go to school, and she oversees the health tax. And the health check at our site is amazing, is very great at communicating and very great listening to what I want to do and what I think we should do with her. Um, but you know, the nurse always wants to make a call. And it's just it.
Scott Benner 15:30
For those of you who are wondering why I have recently switched from Skype to zoom to record my podcasts, this is one of those reasons. Anyway, good time for the Contour Next one.com conversation. Contour. Next One blood glucose meter, huh, Wait, are you here. First of all, the web address contour co NTOUR. Any XT, one, O and e Contour Next one.com. When you get there, what you're going to see is a lighthouse. It's got some lights coming out of it, some are green, some are red, or some are yellow. That's a little bit of a sly send up for one of the systems within the meter to help you know where your blood sugar's falling visually, you know, for in the middle of the night where red might make more sense to you, or green may make you feel comfortable. If you can't really wrap your head around the numbers in the moment. Anyway, that's a tiny part of this meter. biggest part of this meter. It's crazy accurate. That's why I love it the most. If you took away everything else that it was, and it was this accurate, I'd still be down like you could make this accuracy in a shoe. We pretend there was a shoe that was a meter but it was as accurate as the Contour. Next One, I'd carry the shoe around, just use the meter. Luckily, you don't have to do that, of course, because the Contour Next One is small, handheld, beautiful, bright light, nice, easy to read display. And test trips that actually you can go back twice, you know, if you have to to get blood, if you missed the first time don't get enough, you don't waste the test trip. Second Chance, saves a lot of money on test trips. Anyway, I love this thing, it's actually got an app with it that works for the we got that iPhone or the Android. If you guys are interested in seeing your numbers from your blood glucose meter like that, it can be really helpful. But all this is explained at Contour Next one.com you can also see the meter there, it's ardens meters been using it for quite some time now. Anyway, give them a check. Contour Next one.com. While you're on the internet, getting yourself a state of the art blood glucose meter, please check out touched by type one.org beautiful organization, I'm gonna do it right now touched by it'd be nice if I could type touched by type one.org beautiful mission to elevate awareness of Type One Diabetes to raise funds to find a cure and to inspire those with diabetes to thrive, that ought to be enough for you to check out more. They have amazing programs, awareness, annual conferences, they do this beautiful bowling program, they have a dance program called dancing for diabetes, which is just wonderful, they send these boxes out to people who have been newly diagnosed, check that out. It's really a terrific word. Really, really, really, I can't say really enough because I mean, every really I say so I should just say it for the rest of the podcast. But I won't touch by type one.org there are links in your show notes. And at Juicebox podcast.com. We're touched by type one. And of course the Contour Next One blood glucose meter. Okay. But also, I want to tell you here, this isn't an ad though. So let me find what I want to tell you. And then before the podcast gets going again, and then I'll kill the music, and make talky with you and tell you ready. So up until this point, we're just learning about Melissa and her daughter story. But soon we're going to talk about really detailed stuff about advocating for yourself in school, then we trend away for a little while and talk about loop. And then we come back and kind of double down on the school stuff. I actually like the second part of the school conversation, because it really feels like it catches a rhythm. And I mean, the whole thing is great. Don't get me wrong. What I'm trying to say is that in the middle, when we stopped to talk about loop, you're going to be hearing my reactions from a year ago. And they're not the same now. So if you're interested in more, go to Juicebox podcast.com. Scroll down to where it says algorithm pumping and you can use an arrow to move around there to see all the episodes that we've done about looping at this point. We me, I guess in the people I've had on that sounds strange but let's get back to it right now. We get Melissa back on Skype and keep going. Did that dog sit on your phone or something? What happened?
Melissa 19:44
So sorry, no, it was me getting another call and I tried to like cancel it but it didn't work. So it couldn't be my But anyways, so sorry.
Scott Benner 19:55
No, no, don't be sorry. So you were saying that the nurse was good. Was she overreacting like, like wanting to do too much in the moment? Or
Melissa 20:04
I just think that, you know, my approach to type one was kind of a lot of what you, you know, like, I didn't want to give her 15 cards, if she's, you know, just gradually going down, you know, I, and I didn't want to always give her as much insulin as the pump was recommending if I knew he was dropping, you know, and there were just certain things, she would question my decision, because I think she was very black and white, where it says you need to do 1.1 unit, I want to do 1.1 units, but I was like, well, but she needs a little bit more, or she needs a little bit less. Yeah.
Scott Benner 20:36
And so she's following the orders. The again, it's right. It's interesting, isn't it? Like you said, 15 carbs a second ago, like, Doctor says, Hey, if you get low 15 carbs, 15 minutes, right, you know, check again, which was really spectacularly good advice. A long time ago for people to know this technology. Because you know, what, if I'm what if I am on my way to passing out I guess the measure was 15 carbs might be enough to save your life if your blood sugar is falling really far. And check again to really give it time to like work. But you can see so much more now with your decks calm, and you can make more fine decisions with your pump. And it's a different world. But the the orders still get written like that from the doctors. And then I can see the nurse at school thinking, look, this becomes a legal issue. At some point, like the doctor wrote this, I'm supposed to do what the doctor said, right? And then you're stepping in and being like, no, use more, use less don't do right. And that makes them nervous. So how did you get her? Or did you not get that? I'm assuming her but I shouldn't? Yeah, I know,
Melissa 21:36
it is a her and you know what, I think over time, he trusted me as a parent to make good, you know, like, I wasn't being radical. I wasn't like, Oh, she's 59 just let her ride it out, you know, I light incense
Scott Benner 21:49
and have a drink olive oil.
Melissa 21:51
Totally. I mean, I think I really honestly think she knew I had my act together. I mean, I, I really, because of my experience. In the beginning, I felt like I and I as an educator, too. I felt like I needed to read and hear everything, you know. And so I really did read and hear everything I went to diabetes conference, I, you know, we went to City of Hope and hurt. I mean, I just really engrossed myself with a lot of education on on it and how to treat it. And so I think I proved myself to her that I wasn't, you know, being. So she's kind of backed off to the point where she did didn't actually involve ourselves at all anymore, which is good and not good. You know? Um, well,
Scott Benner 22:31
before you move on, I want to say that what you just said is, I think a staple of working with the school, right? It's that you have to, you said prove yourself, I think that's like, I think you have to have a few experiences over and over again, where the nurse finally goes, Hey, you know what everything this person has said, is working out the way they said it was going to, because they don't know you. And they do know every other kid in the school, right? And a lot of those other kids have diabetes, too. And some of their parents don't know what they're talking about. And, and so they're not going to take just someone's word that they know better. And how else are you going to do that? You can't tell them. I mean, you can't sit down. And you know what I mean? Like, if I was a great artist, I couldn't sit down and explain to you I was a great artist, I'd have to paint something and let you see it. And so I think that's what this is, is that you just have to live together for a little while, build some trust, and then grow on it. But But what do you think happens in that moment? Where is it just this? Like, is it a parental defense? Is it like, what happens the first time you say to the nurse, look, it's point one, not point two, and she disagrees with you? Do you feel like oh my god, that woman is gonna kill my kid? Or like, what's that like, visceral feeling?
Melissa 23:43
You know, what I initially let her make I in the beginning, I was like, Okay, we'll do what you want to do. And then because I kind of knew the outcome wasn't going to be what she expected it to be, you know what I mean? And like I said, so the way that it works is that there's a nurse that oversees the health tech, and the health tech is someone I truly 100% trust and I think if she was making the call, I would have been more apt because I feel like she knows my kid really well, you know, she's the one in charge of her all school year. And but the nurses just kind of sporadically in and out of the school. And she has, you know, like I said 4500 different students to you know, oversee. And I so I did initially let her kind of make that call. I didn't like it and then other either her blood sugar was high or blood sugar was low, and I kind of you know, let her you know, like I said, I think over time she kind of said, Okay, I think she sir Come to the fact that like maybe I knew a little bit more about my kid health wise medically, then maybe she did textbook wise,
Scott Benner 24:48
it's interesting that you both were in the same situation. Initially, the nurse didn't know or trust you and you didn't trust her so
Melissa 24:54
well. And I think I mean, and and to be honest, I think that's what the And this is why it's like baffling to me because I feel like everyone's situation, I mean everyone's needs and what they want the school to be, and what you know, the kids are able to perform, and what they're willing to provide. And each family is really different. And I don't feel like I feel like school district that my daughter is at, they don't quite the lady who's overseas, the health nurses are, is not medically trained at all, she has no medical background, yet she makes some medical decisions that I feel are not smart and not, you know, safe. And so this hierarchy of like, Who's in charge of who is really weird, and I feel like the nurses that have everyone should be the one making any medical calls, not, you know, some district employee with an admin credential. And just because, you know, I don't know, it's just really weird and replate wasn't as full when they made the position. Like, right,
Unknown Speaker 25:57
I mean, yeah, right, right.
Melissa 26:00
Let me Oh, man, I don't know if that's, that's the, you know, issue that we're having now is that we have someone in charge who really doesn't know, diabetes, and then isn't really willing to work with us, like a couple of us, our parents in our district are trying to get them to write a diabetes Handbook, and kind of update the training that they're providing the health checks, as well as there's like, there's three individuals at each site that are supposed to be trained with diabetes care. And one of them is the health tech, which is they're great. They deal with it day to day. The second one is like a secretary, who, in my opinion, shouldn't be part of their job description, you know, when they're answering phone calls and helping parents and they should I mean, band aid? Yeah, I mean, cool. They scraped their knee, great, but not measuring carbs, and insulin and that stuff. And then the third one is admin, the principal up the site, which to me is like, is, you know, I don't know. So it's so crazy, I feel. And the health check at our school is amazing. She was there every day, all day, I would feel very comfortable. But when she's not there, she's at lunch, it's kind of like, Oh, God, please let this hour be great. Or let us have a good day. Or I always have someone locally as a backup, because it's scary. Not you know, to have someone in charge your kid that doesn't understand it,
Scott Benner 27:24
you know, so you're really explaining a situation that led me to, you know, texting with diabetes, like how to talk to Arden and eliminate other people from the circle. Right? And because what you're describing, if, from your perspective is simple, right? And it was my perspective to like my kids, there's, you know, she's, you know, using insulin, this is all could be very dangerous. You really all should really understand. But then I stopped them looked at it from their perspective. And I was like, Okay, this is a, this is a bureaucracy this this place, you don't mean like, and, yeah, totally. Yeah, they can't get they can't get the things right, sometimes that they need to get right around teaching kids. And now I'm asking them to make these medical plans. And I thought, What's more reasonable, that I'm going to fix the political and and, you know, social and hierarchy structure of a school? Or if I just look at this whole thing and think, how can I handle this and take them out of it? Because I do, because everything you're saying, to me? Seems seems very doable. It seems altruistic, I hope you get it accomplished. But by the time you get it accomplished, your kids gonna be in 11th grade. Right? I
Unknown Speaker 28:39
agree. So
Scott Benner 28:40
So I agree. I just one day, I was like, Okay, let me pretend these people aren't here. How would I do this? If Arden was just in that building? And I was like, okay, the best way to do this is to just remove other people from the scenario and hope and just put them in charge of, you know, holy crap, everything's wrong. Emergency Plan, handle it? Yes. Let's just make sure the school can knows how to keep her alive. And I'll do the management stuff remotely.
Melissa 29:08
Yeah. And you know, what, actually, so when she started, she's going into second grade. Now, the kindergarten year was really kind of a, like, oh, we'll see what we can do. Last year, I realized by the end of the year, she, I really should be just texting her, instead of texting the health tech, who then calls the classroom teacher who then sends her down to the nurse, and then all of this fat, you know, a lot of extra. And so this year, hopefully, we'll have the five before before school starts and or, you know, relatively within the first week, and that's one of the things that I want to request. But I also know that my daughter who's very responsible, and from the get goes, wanted to do a lot on her own. And she at times gets overwhelmed by how much you know, she gets feels the pressure of like, oh, if I give myself too much, you know, I could make myself go super low, or if I don't give enough, and I'll have to stop and do this again. So I just type walk, you know, our tightrope walk of what kind of responsibility? How much responsibility Do you give them? And how much you say like, Oh, well, they're, you know, I want them to still enjoy pool and be a kid.
Scott Benner 30:20
Yeah, but her then her, excuse me her only responsibility, then in my mind, the way you're setting that up is you have to tell her Look, your only responsibility in this is to read reread and be sure. I'll take care. I'll take care of everything. It's like Mommy will make all the decisions. And you only thing you need to do is make sure you're doing exactly what's in the text message. Take 20 seconds, stop what you're doing read this. Make sure you understand it double check it before you push the button. That's it.
Unknown Speaker 30:44
Yeah, no, you're right. Yeah. And
Scott Benner 30:46
then it'll, it'll grow from there at her pace.
Melissa 30:48
Yeah, absolutely. And you know what, and now the looping thing is helped a little bit more. Because we, you know, I've always was like, if I saw an arrow going up, I wanted to correct her immediately. I wanted to make sure I didn't get too crazy before, you know, it's just, you know, so hard. Yeah. And so now I feel like our, it's been better, it hasn't been seamless. But it's been better in controlling her numbers. It's not so crazy. And you know, after breakfast, or at recess, or whatever it may be. So I'm hoping that will help kind of cut back the amount of intervention she's gonna have to provide for herself during the day. That's a weird thing for me to talk about. Because you and I are talking in
Scott Benner 31:36
August of 2019. Right, right. It's the first week of August, no one's gonna hear this for like five or six months. Okay, and but next week, six days from now, I'm recording my follow up to our looping situation. And it's going to go up right away. So in real time, it'll be up next week. But so I don't want to say something to you. Now that will confuse people six months later, but just so if everybody keeps that in mind while they're listening, a closed loop system right now that the most is talking about is is not, it's not FDA approved. It's not even from a company, Melissa downloaded this code off of the Internet, and, and is using it to help her Dexcom her daughter's Dexcom talk to her on the pod it's making decisions. Now, this is the same code that tide pool is at this point, trying to move through the FDA to get it approved, so that you will be able to use the loop as an FDA approved algorithm on your cell phone, right?
Unknown Speaker 32:34
Yeah,
Scott Benner 32:36
we've been using it for a while now. And it? It's really interesting, because, because imagine you were married to the person who was the love of your life. And I don't know, 18 hours a day was absolutely spectacular. And everything was really happy. But every once in a while, randomly punched you in the face for no reason. Okay, like so. And so you're wandering through the living room, you're like, Hey, we're in love. This is great. Oh, my gosh, why did that happen? I've been assaulted. And then all of a sudden, it's over again. And you're so it's, it's looping is great. Here's what I've learned. You're my test. You're gonna be my test. You're going to get me right. Next week, Melissa. Okay.
Unknown Speaker 33:21
Yeah, I'm Mormon.
Scott Benner 33:21
Yeah. All right. When there's no food involved, I love the algorithm. It's amazing overnight. When Arden sleeps in, you know, when there's no active food nurse system, it's damn near perfect. If and here's the caveat, you get the 9000 settings correct that it requires to make those decisions. Getting those settings correct is mind numbing, and nearly impossible. It feels like once you get once you get them correct. It's amazing. Now here's the here's the problem. For all of you listening to the podcast to anybody who is, you know, being bold with instant thinking about stopping the arrows, like all the stuff that we talked about on the podcast, you are way better at handling a meal than the lupus. Because Because you're being flexible, right? You're seeing something, you're seeing an arrow jump up that you didn't expect, and your brain goes, Oh, we don't have enough insulin and you put in more insulin. The algorithm trusts the settings. So if you tell it This is 45 carbs, and you put the insulin in and the blood sugar goes up, the algorithm doesn't think anything of it. It goes Huh, doesn't matter. I put in the right amount of insulin for these carbs. This is going to be okay. Except that's not true. And it's not it's not a learning device. It doesn't like the next day go Oh, I remember this from yesterday. This time. I'll give it more. It watches it go up. It follows along with what the settings tell. It is right. And it's wrong. So what the loop can't do is it can't be flexible and it can't. It can't think about variables like like 45 carbs of this might not be equal to 45 carbs of that, that, yeah, that kind of stuff. It can't think that way. And it's so good outside of the food, that you start to trust it when you shouldn't trust it. Is that right? Am I right?
Melissa 35:15
No, I get it. Yeah.
Scott Benner 35:17
Okay. So amazing technology for anyone not listening to this podcast and having success. All those other people will try an algorithm whether it's going to be on the pod, you know, horizon, or if it's tide pool loop that you'll one day be able to use probably with any pump. And you know, I know for sure without a pod, because they have a an agreement with tide pools so hard to talk about his also specious at the moment. Yes, right. But all I'm telling you right now, closed loop pumping, is the future, we are all going to be doing it. It's amazing. If you listen to this podcast, it's going to be frustrating, and not at times, as good as you are. For all the other people that listen to this podcast, amazing leap. They'll have amazing leaps in their agencies and their successes and everything like that, because to Melissa's point, when it misses, and it will miss on the meal. And it goes up to 175 and sits there for three hours, it will eventually bring you back down, it might take six hours to go from 175 back to 80. But it will eventually get you back. Whereas, you know right now some people just see that 175 who don't think about it the way we all think about it. They're just like, okay, whatever, and let it ride there forever. Yeah. So it's gonna be an amazing leap for people who don't listen to this podcast. For people who do listen to the podcast, you're going to sleep way better, and be 300 times more frustrated at mealtime there. That's my experience with Lou.
Melissa 36:48
Yay. Yeah, I mean, I had a lot of the same similar. I mean, I'm still trying to figure out a little tricks to like when those mealtimes go wrong, you know, how do I trick it to, you know, make sure that they're giving enough infinite and I sometimes wonder if it's because I have a child, you know, because I know there's a lot of bloopers who are adults who have like, really amazing straight lines. And I'm thinking like, well, maybe it's, you know, maybe it's more than just food. Maybe it's like, reactions. I don't know, I overall it. I was really frustrated like you in the beginning. But I think overall, I feel like there's a lot of less thinking about stuff in between meals. And then there was before so it makes any sense.
Scott Benner 37:32
It does make sense to me that you'd be in that situation. And I'm gonna tell you for me, for as far along as I am with this. I don't think about diabetes at all. When when I'm doing it my way. Yeah, we've loop. I'm thinking about it more. But I've also slept through the night, more days in a row than I have since diabetes existed in our lives.
Melissa 37:54
Is that part of it is amazing, actually. So
Scott Benner 37:57
I'm trading one for the other. Yeah. And the reason that it took me so long, six months ago for you to hear my my follow up to my loop episode with Katie, is because I don't I didn't know how to talk to you about it. And you'll know it. I still am learning. I don't know. Everything I talked about in the podcast was like the culmination of years of effort, right? And then thinking and fixing things and going oh, this is where I do this and like so when I say something, you know, something to you guys at this point that sounds like like, like a T shirt slogan. Like he's like stop heroes. You know what I mean? Like, yeah, that was like six years of me figuring out how to do that and how to explain it to you guys in like two sentences. And so put put me into a completely new situation. I'm, I'm back in the learning process. I'm doing exactly what you're doing, trying to figure out how to fool it, how to like make it do what I want. Because here's the biggest problem with loop, right? It when it thinks you've put in enough insulin, but you haven't. And you go Oh, it needs more. When you put it in, it takes away all the bazel Hmm. So if your basal rate is three units an hour and you think you need three more units, you put the three units in as a bolus, it takes the bazel away and you're back to zero again. It's like, you're like your mother. And just Yeah, I know. I'm gonna curse so much when I talk about the loop on my own that episode. So it
Melissa 39:18
is it's I will tell you I felt like I'm a fairly intelligent person. And in the beginning with those settings there it was mind numbing how much I was thinking. I'm like, Is it the bazel? Is it the Max? You know, math being all God
Scott Benner 39:33
is is up here's my one fun thing. Why do an end? Why Why would an engineer look at a setting and say, Okay, what we'll do is when you make the number lower, it'll be stronger and when you make the number higher, it'll be weaker.
Unknown Speaker 39:45
You're absolutely right. Like
Scott Benner 39:46
I get how your math engineer mind thinks about it. But did you not think about everybody else when you made? No? Absolutely, like volume up is more down is yes.
Melissa 39:57
100% I am Yeah. I don't even know. And I feel like, um, I, you know, like I'm on the loop. There's like a new Facebook group for looping with kids. And I feel like a lot of parents want to know everyone's settings. Like, what's your settings? And? And yeah, and I feel like it's almost detrimental to like, look at someone go, Oh, that's a seven year old girl and I have a seven year old girl. Let me you know, type in their settings. It's like, No.
Scott Benner 40:25
I'll tell you right now the best piece of advice I got was from somebody who's on the podcast, who by now people would have heard, because I recorded her before you. But she told me to stop thinking of the the range as a range. She's like, Don't think of it as like, Oh, I want her to stay between 80 and 100. Think of 80 as when the bazel shuts off and 100 as when it turns on. And I was like, ooh, and that like light bulb? Me but so I will tell you that. There were three times I was gonna quit. First three, yeah, first three days. I was like, This is stupid. The second three days, Arden said to me, why are we doing this when we are so much better at it than this is? And I was like, Arden, I know you don't listen to the podcast, but right on kid. Yeah, great. We are way better at this than this loop thing is then the human.
Melissa 41:17
You know, we we make judgment calls on the fly like, oh, wow, we need to do this not? This is what you put in, you know?
Scott Benner 41:25
Yes. And I think that that's going to be an issue. You know, hopefully it won't be but that the expectations of people are way skewed on what this stuff is. Yeah, like they definitely think it's, you know, a miracle worker robot making like, you know, heavenly decisions. And and it just is not that. It's amazing. Because why? Because it shuts your bezel off when you're getting lower. Like and when you're getting and when you try to get high it Jacks your bazel up and it Jacks it up like crazy to like, yeah, that part is amazing how it works that I love around food. It's, it's I know, it's
Melissa 42:03
hard. It is hard. It I agree. I agree with everything you're saying I am. Yeah, it is definitely in it's so different than what you know other like what like you were describing and what you do, it's it is different. It's hard sometimes to have something work so well and then switch it completely and then have to learn something totally different. So
Unknown Speaker 42:25
yeah,
Scott Benner 42:26
I stuck with it because of the podcast. Because and because I believe that this is the way things will be done in the future for most people.
Unknown Speaker 42:35
And so will you stick with it?
Unknown Speaker 42:36
Yeah, yes. Okay.
Scott Benner 42:38
I got asleep. I'm almost 50 Let's get it
Unknown Speaker 42:40
right. Yeah, I get it. You know, I mean, like, I'm gonna Yeah, I can't,
Scott Benner 42:44
I can't, I can't like, I'm not gonna live forever sleeping the way I was sleeping before. And it by the way, it wasn't bad. Like, I don't want people to think like I was up all night. I was like, you know, it's just like, you know, one o'clock, you take a look maybe four o'clock. alarm, like that kind of stuff. But broken sleep is rot. It's worse. It's, I'd rather sleep for straight hours than six hours and get up twice. Yes, just I agree. And it's not get up to go to the bathroom getting up because that as long as you don't stub your toe, you don't. You don't really wake up. Yeah, I mean, we aren't getting up and making a decision about insulin or having that adrenaline rush of low blood sugar. That's difficult. You know what I mean? Yeah. So anyway, it's it's a it's, it's something I'm going to stay with, because I feel a responsibility to the people listening to this podcast, because I do believe that it's going to be an amazing improvement for most people living with diabetes and using insulin. Yeah. And because and because the sleeping part. And you know, for Arden as well, when she leaves for college, like this is just And plus, we don't know what it's going to be years from now. I mean, like, if it's this now if it's this good right now, coming from some well meaning people on the internet, yeah, right, then it's gonna, it's going to get amazingly
Melissa 44:03
better. Right. I and, and honestly, from the get go from the moment that we were diagnosed, I have felt that I have entered this type one world in a way that was less, you know, alarming, I think, than others only because I had a dexcom I had, you know, a pump. My experience wasn't you know, what people did 20 years ago, and I don't I look at it and go, Oh, my gosh, I feel so lucky that I did have the deck come to me with everything and still is everything. You know, without that I feel I feel like I could get rid of the pump and I could get rid of the looping and all of that. But if I didn't know her blood sugar, I would be anxious all the time. You know,
Scott Benner 44:42
no, I understand. I it's just, you know, the people who will tell you well before and all this stuff we all live to I'm like, Yeah, I get you, but this is better. So yeah, no, it's um, it just is it's it's having the information is better than not having the information. Okay, so, so we'll get away Actually, let's do this. All right here, I'm gonna say something and then pause, and then keep reading. Okay? If you guys would like to hear the conversation I had with Katy de Simone, go back to Episode 227. And if you want to hear the one I did as a follow up with Jenny Smith, you can go to Episode 252. Okay, Melissa, I'll fill that in later, when I actually know what episodes they are. I want to go back to the school thing a little bit, because you are in, you are in the exact same place I and most other parents find themselves in in this moment, you are scared, anxious, seeing people who are probably not really putting in nearly the effort to this diabetes thing that you need, looking for an answer, finding a lot of stone walls, what is it you're going to do?
Melissa 45:45
Um, you know, I, I don't know, I'm gonna do the best I can. I'm gonna rely heavily on the people I do trust. And, you know, kind of, I did a lot of pushback last year on on certain things. Like, for example, last summer, I asked, you know, someone change a pump site, if, you know, something happens to her, she rips it off, or Kenya was bent. And and I got, yes, the nurse will do it. And then later in the year, I found out from another type one. They said, No, it's not, we cannot do it. It's too involved. Um, and then I was, but I was never informed of that. So it's just a lot of like, misinformation and kind of what's told to one family isn't necessarily communicated all families. So I did a lot of like questions. I mean, I'm gonna push back on certain things like for that, for example, you know, and they basically when I did ask, Well, why are you saying that? You can do it, but then telling me telling another family No. And they had an old Medtronic pump. And I guess it was too involved for the nurse. They said it was too complicated for the nurse to change the Medtronic pump. But by Omnipod pump was pretty easy, and that they probably could do it that they needed me to contact a trainer to train the nurses. Well, when I contacted Omnipod, they said, We don't train school nurses, you know, which I can understand why. So I offered I could train. I mean, I've been doing this now for a year and a half. I'm pretty sure I know what I'm doing. I could teach them but I never got a response. So it's been a true battle. And I think at this point, like you mentioned, I think I am going to rely solely, not solely but mostly on my daughter and, and you know, take care of herself. He's super responsible, and I trust her more. In fact, I started teaching her how to change the pump. And and when I spoke to the school board in regards to this, about it, they you know, it's like How can a medical, you know, a nurse not feel comfortable yet my six year old is capable of doing it. It doesn't make any sense. Like it's too complicated for a nurse but yet my six year old could do it. I don't get it.
Scott Benner 48:01
does make sense. Let me just be a little more cynical. So here's the Okay, you live in Los Angeles, the weather the weather's beautiful. Nobody's day really gets going till around 1130 you're living a different kind of like wonderful life people. People who have never been in LA don't know. I swear to you, nothing happens to like 1112 o'clock. Yeah, right. Right. It's gorgeous. There, the weather's fine. There's no humidity, people are beautiful cars are beautiful. Everything's beautiful. Life is good. Let me give you a little more Philly New York about this, okay. They don't want to be responsible. They don't want liability. And as much as they try to shine up a school to make it look like a community thing. It's a political machine. Right. Okay. And so, my, I got to learn it early on my daughter's my son and daughters principle of their, their, were their kindergarten and first, second third, I think fourth fifth grade was, was, as I looked back on it, a politician. She smiled and waved and everything was okay. And I came to realize that if I would have walked into that building, and the whole building was on fire, and I would have found her and said, Oh, my God, the buildings on fire, she would have given me the same smile, the same wave and the same reassurance that everything's going to be okay. And we've got your kids best interest at heart calculate,
Unknown Speaker 49:19
right?
Scott Benner 49:20
So their job, because think about it. You just said like 4500 kids in that school or something like that, right? Oh my god. 4500 kids. Most of us believe our children are little princes and princesses and we want them treated very specifically. Well, if they start doing what you want, then they're going to have to start doing what everybody everyone and for some reason, they can't separate medical from Billy likes an Eastern sun on his face around two in the afternoon, right? Right. Like the difference between a real ask and a an a BS ask right? Hello. So they just don't do anything. Their job is to do nothing. And get you out of the building, and then get somebody else in there. And just as minimal as you can teach the kids this curriculum as best they can. And they're moving you along. They don't. They're not thinking about the things you're thinking about. And even when you describe them, they don't understand them. They don't. And if they understood them, they still might not care. Because they, they fall back on that we've had other kids with diabetes here. I actually had a woman say to me before, do you know how many kids with diabetes have been through the school? They're all still alive? And I was like, I was like,
Unknown Speaker 50:27
Oh, thank you. Is that the Mendoza
Scott Benner 50:29
line for this? Like, yeah, not dying. Wow, like that. That's the bar. And so I said, Well, what are their agencies? What were their blood sugar's during the day while they were here? How well were they able to think about the things you were teaching? Their blood sugar's 250? All the time, where they cloudy? Were they always worried about being the kid who, quote unquote, passed out at school one time? Like, like, what if we make their lives healthy? And good? Like, I think that's doable. And so when I put it on them like that, and I said, How about I just take care of this? And we keep you out of it? Oh, no, we have to be very involved, blah, blah, blah, blah, blah, because that's how they always did it. And then I said to them, you know, what, if I'm making the decisions, you don't have any legal liability, and they went, Okay, when do you want to start? And that was it. As soon as I took away their liability, they didn't care.
Melissa 51:15
Absolutely. And you know, what, this year's D, which is diabetes management plan that they gave me, I got in the mail at the end of the school year, it actually has somewhere on there, like parents are able to make, you know, decisions against the carbery. Things like that.
Unknown Speaker 51:31
You need Yep,
Melissa 51:32
yep. And so I mean, an AR endo is pretty awesome. He will I mean, and so that leaves me another I'm, we're going to end next week, and I am a little bit nervous about telling them about looping, because we've been only doing it since May. And we haven't seen him since then. And I don't know how he's gonna react or what he's gonna say or what he wants for us to do. But I know that and that was my decision I need to kind of make is like, how independent do I want Chloe, I don't necessarily want him to check the box. fully independent, even though you can do a lot, because I know them. They have zero responsibility and taking care of her. And so I need that kind of still where Yes, she's mostly independent, but they'll need some adults, you know, help. Okay.
Scott Benner 52:20
So I'm looking at a text message here from Christina, Christina. Nobody knows who you are. So don't worry, when I read this. She's trying to get the same thing set up at school, you know, where they make decisions. And they, they're out of it. She said she walked away from the windows office today on the medical plan stating that, quote, child self manages his diabetes with direction from parent through text messages while in class.
Unknown Speaker 52:44
I like it. That's perfect. And
Scott Benner 52:46
that is perfect. And when I and she's like, you know, she's like, well, now let's see what they do. You know, when I go in there, and here's the only thing I said to her, be direct, be nice. Remember that you're not asking permission. You're informing them. Right? You're not in there asking if it's okay. You're in there, letting them know that this is what's going to happen. And let's get it in, you know, we can I can do whatever you need to make it comfortable for you. You're not you're not asking permission to your kid. Right? Right. It's their health, right? You're, you're telling them what's going to happen. Imagine if your kid had, I don't know, cancer. And they needed an infusion of something every day at one o'clock in the afternoon. And they were like, and we're not comfortable with that. But you'd say I don't care. It's keeping them alive. And they'd go, Oh, you know what cancer? Yeah, I guess so. Because they think of that is more dire. Yep. And it's no more or less dire than what you're doing. But you write your thing doesn't like infuse them with fear. Like, Oh, right. Your kid will just get a little busy. That's okay.
Unknown Speaker 53:48
You get them a giant juice bar.
Scott Benner 53:52
They'll hang out with the nurse. It'll be fun. Yeah, except for the 45 minutes of math that she she doesn't get mad. Yeah. And then three years from now I think she's got a head injury because she can't add Yeah, I mean, like yeah, now Come on, but you're doing the right thing.
Unknown Speaker 54:06
I got it. I love it. I think you're gonna do well with it.
Melissa 54:09
Well, thanks I'm gonna try I mean every year is worth a try you know what I mean? And and I do I feel more of an obligation or I not an obligation or responsibility for those that are coming I just I feel like a lot of type one parents don't realize what they can ask for you know, from a school or what you know, the schools can do and should do you know, a lot of times they let the school direct them on what they're going to do like Whoa, I got the iPad to follow on a dex calm, other parents were like, what? They didn't tell us that they gave you an iPad and I said, Well, you need to go in there and say I want an iPad for the health tech. Follow my kid you know, and so it just things like that. I mean, it's just they're never gonna disclose more than they have to and offer more than they have to pay for and I get that phone today. Actually the
Scott Benner 54:56
feeling I have when I get in bed at night and I look over at Kelly and I think Would she be amenable to sex right now? And yes, and if she would be, she doesn't tell me that, right now I have to I have to ask because if I because she's trying to get to sleep, you know, like I get, it's a very similar situation like, and you're sitting over there thinking I do it. But if he doesn't say something,
Unknown Speaker 55:17
yeah, I'm gonna go right to bed.
Scott Benner 55:20
Everyone, here's the truth. Everyone's looking out for themselves, which is not a not a bad thing. And, and the school is doing the same, they're trying to limit their output of cash, their output of manpower, their output of responsibility, the minute they tell you, you're going to do something, that's the minute that when they don't do it, you can sue them. And so they're trying to stay out of actionable situations. totally understandable. And you and you want the whole world to know, which is beautiful, by the way, thank you. Thank you, for me, and for everybody else listening. But let me rain a little bit on that rainbow for you for a while. It's this is the struggle, it's always been the struggle, it's always going to be the struggle. And it will always be people like you who yell louder and make it in this moment, better for the people around. But in that same school district five years from now, someone else like us gonna come in, see the same thing. And it's going to start all over again. It's just it's a cycle. It's something's about society are so big, you can't fix them, you can only bump and nudge them into line. Do you know what I mean? Like, not see, I've done the thing here, where? unintentionally, I've brought it back to diabetes. But but it's diabetes is such a big idea that even with a great algorithm, or a dex calm or insulin pump, or all that stuff, you're still going to get low once in a while. I don't know where you're still gonna get high once we're out of nowhere, there's no perfecting it not right, not right now. And it's the situation at schools the same thing. You just, you're just gonna have to bump and nudge when things get out of whack, but mostly, just trust that the world's been spinning for a long time. And you're probably going to be okay, most of the time.
Unknown Speaker 57:05
Yeah, that's it. Yeah.
Scott Benner 57:08
I feel like I've dropped a lot of wisdom here, Melissa.
Melissa 57:10
Yeah, you did? You really did? Well, actually. I mean, I know, I really do feel like, you know, I think, you know, when it's when it's involving your child, you know, like the mama bear comes out in here, like, you will take great care of my child. Yeah. But I think, you know, in reality, you helped me answer a lot of like, uncertainty of what I was going to do with my child this year, as far as how much responsibility she was going to have. And I think, you know, I think it becomes clear that and I felt it this way last year, too, but, but I really do need to trust the people I trust the most to take care of her. And the rest of them that they say are qualified to take care of her. And you know,
Scott Benner 57:48
they're there to call 911. Totally, yeah.
Melissa 57:51
I don't even know if they know how to do glucagon. I mean, I really don't know. But let's hope that they don't. I don't hope I can get the nasal one so that no one has to mix the powder with a liquid because that probably is undoable for some of them. There's
Scott Benner 58:03
another one coming to that's not nasal. It's still injectable, but it's pre mixed. Oh, I think that's gonna be on the podcast in a few months. So
Unknown Speaker 58:11
okay, that's cool, too.
Scott Benner 58:12
But yeah, listen, here. Here it is. It's so funny. I, you and I just took this episode that I thought I was just gonna probably fall in line six months now. And now you made it something I'm gonna put out next month right before back. Oh, yay. Because because this is what people because you are trapped in the same trap that everyone gets trapped in. And somebody like me, who's so much farther down the path than you is that stuff, they're going luck. A lot of the stuff you're worried about is not going to be a problem. And a lot of the stuff you're concerned with isn't fixable. But here, here's the way to like negotiate through it without me self mental and by the way, without making the school hate you. Or, or turning you into the crazy mom, because that's what they're gonna think. Yeah, I heard I can still hear myself standing in that office saying, You don't understand what could happen to her. And I'm like, and I look back now and I'm like, Oh, they must have been there like and because they didn't understand. They must have thought, Oh, look, he's out of his mind. Isn't that sweet? You know, and so, and they're never gonna understand because they don't have diabetes.
Unknown Speaker 59:08
Right. Right. But
Melissa 59:10
no, absolutely. I feel like I said that. I feel like I have said that. You know, like, you're just not getting it. You know? So I agree. I haven't gone crazy yet, but I
Unknown Speaker 59:19
felt moments of it before you
Scott Benner 59:21
explain. No matter how accurate you are. The crazier you sound.
Unknown Speaker 59:25
Yeah. No, I get it.
Scott Benner 59:27
She has to have gummy bears with her at all times. Yeah, something like that. Yeah. Somebody with diabetes. Everyone else hears, hey, there's a lucky lady in the office. What time's lunch? They're in a different world. And so and so. Take them out of your diabetes. Well, like you know, leave them there for the things you need them for. And yeah, and don't get me wrong to some of you are listening right now. Going nurses. Excellent. And this is all Bollea. Sure if your nurse is excellent. You're not Melissa situation. Yeah. And good for you. You know what I mean? Like, yeah, do whatever you want to do. I'm telling you that for 18 hours a day Your kids at home with you. You're managing the way you're managing. If it's going really well, there's no reason to give that away while they're at school. That's all, you know. Yeah, no,
Melissa 1:00:09
that's the exact point. I mean, that is it hard to relinquish control, someone who doesn't quite know what they're doing? I am, and I am jealous of the people who have really great nurses who are, you know, working or even aids that are with their child all the time. You know, it's just not my world.
Scott Benner 1:00:25
You're lucky. Yeah, that's, that's an amazing someone else can come on and have in the past in the last year, somebody's been on news, like, my kids, you know, bah, bah, bah is amazing. I actually have had on a parent, and the person who aids the kid at the school like in like succeeding weeks, and, and it's an amazing story, when you have something like that. That's crazy. Cool. But most people don't. And by the way, your situation was said to go the other way, is about a million times better than a lot of other people's situation. Yeah.
Unknown Speaker 1:00:53
As
Scott Benner 1:00:54
you think it is. People out there right now are going like, wow, I wish Yeah, right. I
Melissa 1:00:58
get it. No, I get and you know what, I remember listening to one of your podcasts, that was someone who privately hired a type one college student, and you know what I'm talking about? And they went into the school and Yeah, kind of shadow the kid. And I thought that was so cool. But I also don't have that kind of money to have, you know, someone come in and do that. Yeah, totally. I thought that, but I thought what an amazing fix to what they're, you know, and they're capable of doing. And I just thought that was so smart to hire someone who is, you know, capable of taking care of their child at school. I mean, that is another example. Maybe they didn't really trust the system there too. So
Scott Benner 1:01:35
your gardener or your, your cool? Yeah,
Unknown Speaker 1:01:37
no, no, I
Unknown Speaker 1:01:40
got a giant yard, you know?
Scott Benner 1:01:43
Listen, I think everyone, so you're making the point that no matter what situation you're in, there are some tools at your disposal. Mm hmm. Some people can afford to, like, you know, hire someone to go to school with their kid, that's me if that if you can do that, you want to do that. That's amazing. But there are tools at your disposal to the mistake, the mistake I don't want anyone to make is to look at the system. And think I can't change the system, or stop because you're right, you can't change the system, although some people have made inroads, but it's an there was someone on from Texas A long time ago, who literally changed the way their entire school system handled diabetes. But, but it was an undertaking that, you know, it didn't happen, like with a phone call an email in time in time for your kid to go back to school. Right? So, um, and so I think you just have to, you know, you have to look at the course you're running and just run it like, you know, don't don't run into walls, don't scream and yell at people who aren't listening. Just do what works. You know what I mean? Like, yeah, I agree. Yeah, in the apocalypse, Melissa, when the zombies are coming for you. You don't stop and go, Well, they're gonna kill me because I don't have a stick with me. You look around for something else, and you keep fighting, right? So you're in that situation, like, it's not perfect. It's not perfect. But stopping is not really an option either.
Melissa 1:03:01
Totally. And it's not as bad as it could be. Like you said, it's not as that I mean, we really do have an amazing health tech that loves my child, like her own and that person. If she wasn't at that site, I'd be probably a lot more nervous. But she is there and she leaves for one hour and in that hour time have lunch, you know, I just have to hope and pray everything just kind of falls in line. And you know, and like I said train and probably talk a little bit more about what my daughter condition like she's hypo and aware. So that's, but thank God for the dexcom because I could be like, Hey, girl, you need your sugar, you know? Um,
Scott Benner 1:03:38
so yeah, well, Melissa, we are at the end. I know it probably seems unlike that because so easy to talk to me and everything. But I have and I have another call coming up, like in a couple minutes. So I have to jump. I will let you know when I'm putting this on. But like I said, I'm very much leaning towards the end of summer, early fall. So thank you so much for for sharing your story. And yeah, thanks for No, I really appreciate it. I really do. I'm sorry, I'm jumping so quick that usually a more
Unknown Speaker 1:04:04
No, no, no, don't worry. I get it. Thanks so much. All right. Have a good day.
Scott Benner 1:04:10
Well, thanks to Melissa for sharing her insights. I thought it spurred great conversation. I'm really sorry that I sat on this episode for so long, but I was trying to do the right thing. And we'll see what happens. Anyway, thanks again to Contour Next One that's a blood glucose meter you should know more about and of course the touch by type one. You can find them at touched by type one.org. And the Contour Next One, is it Contour Next one.com go there to find out if you're eligible for absolutely free meter today. Hey, who remembers Episode 53 Terry lives on a boat? Well, Terry is going to be back later this week on the podcast to do a follow up. It's a really terrific conversation a little longer than they are usually but I had such a good time and Terry did a companion blog article. To put on my blog to go with it. So, you know, look forward to that is what I'm saying. The way I got Terry back on, by the way, is by asking online for people's favorite old episodes, who do they want to hear from again? And Terry came up a lot. If you have other such thoughts about people you've heard on the show, before that you'd like to hear again, send me an email, let me know. Maybe it'll happen. Thank you so much for listening to the Juicebox Podcast for sharing the show with other people. And the wonderful reviews and the wonderful reviews that everyone's leaving on Apple podcasts through their podcast app. Really cool. Thank you. This show is about to have a milestone month, and about to run into a milestone. huge milestone for the rest of it. It is almost completely due to how much effort you guys put into sharing the show. I'm giving myself a tiny bit of credit for making the podcast. But I mean, seriously, I could be making the show and you guys don't share it and it just doesn't grow. So thank you so much. Have a great day. I'll see everybody soon. Wash your hands.
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#90 Jesse Was Here
Sensitive topic - please consider not listening with children present.
Michelle has been a strong advocate in the “d” world since her son, Jesse, was diagnosed with Type 1 diabetes in 2000 at the age of 3. After the sudden loss of her son at the age of 13, she continues to advocate and educate.
reading: 7 Things I’ve Learned Since the Loss of My Child
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#78 and #79: Football and A D-Mom
Got a little Two for Tuesday for ya...
In episode 78 we have Brandon Denson is a former Michigan State Spartan who doesn't let anything stop him from achieving his goals. You may have seen Brandon on American Ninja Warrior proudly displaying his infusion set and Dexcom sensor.
and in episode 79... Kristin's family has a host of auto immune issues. Her son was recently diagnosed with type 1 diabetes and she is on the podcast to share their story.
Also available on iTunes and all of your favorite podcast apps...
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