#1474 Head Like a Hole
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Diagnosed at 26. Chicago pediatric nurse and new mom who built a looping algorithm after overcoming early depression with her husband’s support.
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Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox Podcast. Welcome.
Theresa 0:14
Hi. My name is Teresa, and I have a daughter who is almost 14 years old with type one diabetes, who was diagnosed back in December of 2020,
Scott Benner 0:25
please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. AG, one is offering my listeners, a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure you check out drink AG, one.com/juice box. To get this offer, don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com I'd love it if you would go to T 1d exchange.org/juice box and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation, T 1d exchange.org/juice, box, it should not take you more than about 10 minutes. Today's episode of The Juicebox Podcast is sponsored by the ever since 365 the one year where CGM, that's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the ever since now, app No Limits ever since. Today's episode is sponsored by the tandem Moby system with control iq plus technology. If you're looking for the only system with auto Bolus, multiple wear options and full control from your personal iPhone, you're looking for tandems, newest pump and algorithm. Use my link to support the podcast tandem diabetes.com/juicebox, check it out.
Theresa 2:19
Hi. My name is Teresa, and I have a daughter who is almost 14 years old with type one diabetes, who was diagnosed back in December of 2020,
Scott Benner 2:29
Oh, wow. That's four years ago, almost to the day her divers three was just this past Sunday. Wow. Did you set it up on purpose for the recording to be near that?
Theresa 2:39
I didn't. That was your first available on an email. Jeff, happens all
Scott Benner 2:43
the time. By the way, I'm always thrown by it. People like, Oh, my diversity was yesterday, or my birthday is today. And I'm like, You do this on purpose? And they go, No, I don't think so. I'm like, Okay, right? Four years ago, she was 10. At that point,
Theresa 2:55
she was about to be 10. She turned 10 in January, right after her diagnosis.
Scott Benner 2:59
Okay, well, how did you figure out she had diabetes? Well,
Theresa 3:03
so COVID was weird, of course, you know, everything was shut down. And you know, she was home, she started complaining of blurry eyes. So she said things would get blurry and then things at night in her room. Weird as it is, she said would get bigger and then smaller. I'm like, What is going on? So I, you know, took her to the eye doctor, and they did a routine eye exam because she had no history. She showed them more glasses. She, you know, has always had normal eye checks, and it was normal. So I thought, okay, and she's always really been, like my traumatic child. So there's something wrong with this kid every day, every day, there's something new that hurts or aches or something, so we don't put too much thought into it. However, you know, being her eyes, I was like, Okay, let's take care of this. But that wasn't it. She then was having some accidents. But, you know, looking back, of course, it makes all the sense, but at the time, it was always when she was playing outside and she had to go and didn't make it inside. But, you know, we were nine years old at this point, so that was getting kind of odd. And in October that year, she went on a camping trip with my husband, and she had an accident in the middle of the night, and he's like, you know, that's really weird. Like, what's going on? Things progressed really fast, from like, the end of October to the beginning of December, when she was diagnosed, to where the thirst was just insane. So my husband did some Googling, and he's like, maybe we should take her into the pediatrician. So I took her in, and I took her in by myself, and he did urine test, and he came back in the room and he's, you know, of course, gave the speech of, you know, don't freak out. But you know, she has type one diabetes, and you need to go home, and you need to pack a bag, and you need to go straight to the hospital. And of course, I'm freaking out, and it happened to be my daughter had a snow day, so that day, and I'm like, let's just go the doctor today, because we have off, because I'm a teacher. Also, you know, she's like, You ruined my snow day. So that's her story of her story of diagnosis is my mom. In my first snow day of the year. Why'd you do that? It's horrible, right? So terrible. But, you know, it was very it was very scary. The doctor was somewhat reassuring, because he's like, my wife has type ones, so you know it's gonna be okay. But you know, when someone goes tells you to go straight to the ER and pack a bag, like dying, like I thought she was dying right then and there. And I'm like, holy crap. It's
Scott Benner 5:20
my favorite part of those stories, by the way. Theresa, like, don't panic, but right home, grab everything you need to stay alive and immediately go to the emergency room,
Theresa 5:29
exactly, and you're going to be there for several days. I'm like, what? But don't
Unknown Speaker 5:33
panic. Please don't panic, right?
Theresa 5:37
So, you know, I took her to the Children's Hospital. We're in Ohio. We have a really good children's hospital in the area, and took her there, and they were great, you know, but it all happens so fast and there's so much information that it's kind of a blur. Looking back, I think they gave me good information, but, you know, you got home and you're just panic stricken. I mean, my life just everything just stopped. So it was pretty traumatizing for everyone, I think, but we figured it out somehow
Scott Benner 6:04
in two days. You're the second person to say that he used those words, like my kid was diagnosed, and everything else stopped.
Theresa 6:10
Oh, everything just stopped on the dime. And I'm I've always been a working mom. I'm a teacher. I used to teach preschool that I taught in this I actually taught in my daughter's school system when it happened. So that was somewhat comforting. Of like, I contacted the school, you know, that kind of took care of me and her for excuses of being absent or whatever. But it was just time just stopped for, like, I would say, a good week looking back on it, and nothing else mattered. I felt so bad for my older daughter because it was just like, sorry. Can't do you right now. Your sister needs me so felt super guilty about that, but yeah, time just it just stopped that day.
Scott Benner 6:45
Isn't it funny to how we, in the course of a regular day, will say, I don't have time to do that. I can't make time to do that, but when something really shows you there's no option, you make time and everything's fine afterwards,
Theresa 6:59
right? The World kept going. Nobody needed me for that week. Everybody survived. Turns
Scott Benner 7:03
out you're not the only reason the company is working exactly. I'm not talking directly to my wife right now, just in case you're wondering, there's an opportunity there to look back and to have a moment where you say, Oh, maybe I can give myself a little more leeway throughout my days. Yeah, when someone says, Hey, your kids got to go to the emergency room, all of a sudden, everything else you thought was super important doesn't matter. It gets a perspective shift Absolutely.
Theresa 7:29
Yeah, I was lucky enough to be working from home at that time too. I was the lucky teacher that got to be virtual that year. I teach, or I taught reading intervention K to four, and I was just doing it virtually. So looking back, everything happened for a reason. Right before her diagnosis, I had left a job that I had been at for 17 years, and I'm a creature of habit, like I never want to change jobs ever. And I just so happened that, you know, an opportunity presented itself and I changed, and my first thought at diagnosis is, this is what you get for changing jobs. Like I That's my reason, my rationale for it, because, you know, I didn't know my bosses real well yet. I didn't have a rapport with them. I'd only been there two months, I see, and now all of a sudden, I'm like, I need a week off. My life has fallen apart.
Scott Benner 8:15
They're like, Oh, great. We hired one of those exactly
Theresa 8:19
that person at that moment. And at my previous job, I was, I was an administrator of a pretty large preschool, and, you know, I managed all these staff and had all these people that called off all the time. And I'm like, oh my god, I'm that person. Now.
Scott Benner 8:31
I really appreciate this job. I'm super excited to get started. Can I just get a month off? Right? Yeah, right,
Theresa 8:35
yeah. So it was pretty crazy, right? But, you know, we left the hospital and we left without a Dexcom. They didn't really push it, you know, we googled real quick, and so we brought it up, like, you know, what's this Dexcom thing? And they're like, oh, yeah, you know, we could get you started on that, but it's really expensive, so you're going to need to figure out, like, your insurance situation first. So I called the insurance, and of course, it takes forever. And you know, generally, before this, we were pretty healthy household, so we had not met our deductible when it was December, like we hadn't even done it our deductible. And so it was, do I order this and have to pay completely out of pocket for it, or do I wait and deal and get everything squared away in the new year? So we opted to wait, not knowing, like, what information we were missing out on. Yeah, so we actually did finger sticks from december 2020 till the end of April 2021, so about five, six months, and boy, if I could rewind time, that would be what I changed for sure. Yeah,
Scott Benner 9:37
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Theresa 11:59
learned I had no idea of what I was doing, you know, not being able to see after you eat, what happens. Because, you know, she's new to this too. So, like, I didn't want to stick her finger every five minutes, right? Like, you know, with the Dexcom. So, you know, we were always reacting, because you could never be proactive without a CGM. It was just, I'm reacting to what that number said and what she's about to intake, and we'll hope it all works out in a couple hours, and we'll see where we're at. So that was very frustrating, because I'm definitely, like, control freak in a lot of areas, so always having to be on on the reaction mode, versus the, you know, being proactive. So that was hard for me, but once we got that in place, it was like, holy cow. You know, this whole new world of information, and then it became obsessive, now that I have this information, and I had actually joined your Facebook group before getting to CGM, and I just kind of lurked in the background, and I actually left the group, because I felt like everybody's doing this better than I am, like everybody, and so I couldn't take like, the guilt is I would scroll through the page of, like, look at all these perfect numbers, and people are eating Olive Garden, and people are eating pizza, and here I am, my kids eating, like, you know, everything that is carbs or low carb and just easy to control. And then, actually, after I got the CGM, I rejoined the group, and that's when I was like, Oh, I can do this now. I can figure this out. Can
Scott Benner 13:22
we dig a little more into that? Because I had an interesting moment this morning when I was setting up for you, and I thought, is this like a guest that's been on before? Because I really recognize your name, but from the past, it felt like but then I looked and you were more recently in a post about, like, newly diagnosed people, and I was like, I got really confused. I was like, I don't understand what's happening. But that didn't occur to me. And what happened to you is not uncommon. We get a lot of people who are like, you know, I don't know what to do. Someone suggested this, or, you know, I was inundated online. 75 different people told me Juicebox Podcast. So I went and looked. Then I got there. I was overwhelmed. I left, but then I came back. It's the but then I came back. I hear a lot. So, yeah, go more into that.
Theresa 14:10
Well, I was actually a part of some of the other groups online. I won't mention their names that are as active as yours, obviously, and not doesn't reach the people you reach. I saw them banning post with your podcast in it. And I thought, What am I missing? You know what I mean, like, it intrigued me more to go back, and that's actually what made me go back, is like, why does this group hate this being mentioned so much? I
Scott Benner 14:31
hope they don't hear this, because they don't realize they're my secret weapon. I bet.
Theresa 14:35
I bet. I mean, it was kind of crazy. It was like, that name could not be mentioned. And, then, you know, I saw that a few times. I'm like, well, maybe I am missing out something, and now your group is really the only group I'm in or pay attention to. Anyways,
Scott Benner 14:47
I'll have to tell you something. I don't know. How do I tell you this story without giving away more than I'm supposed to? I was involved with somebody who was speaking publicly somewhere, and in the audience stood up a person and. Who railed against me, and this person who was speaking, I have a relationship with them. So this person in the crowd is railing against me in this public forum, and most people would think, Oh my god, like, that's going to ruin my relationship with this person, or people are going to think ill of me, or something like that. I got a phone call later in the day from the person who was on stage, and they said, I have never been more sure of my affiliation with you until I saw how much that woman hated you, right? And I thought, He must really be doing something different for someone to dislike him that much. And I thought, Wow, that's awesome. Like I thank you for seeing that. First of all, the truth is this right is that, you know, there's a way things get done. It makes everybody comfortable. They don't seem to care if it actually works. It's just what the system or what society or whatever agrees is okay. And I think we all know that, generally speaking, what we all agree is like safe is generally not helpful. When those other Facebook groups say, like, you can't post about Juicebox, I always assume it's one of two things, either they're scared of just that tagline that came out of one of those episodes, like bold with insulin, which is, by the way, something I said in passing. It's not like it was a rule or something like that, but I said it in passing, and people responded to it, and then they found value in it. And it's a thing that people have heard because it's something that works for people, not because I made it up and I marketed it to the end of its life. It's out there because it was valuable. They either are scared of that idea and haven't actually listened to the podcast. If they would listen, they would see all I'm talking about is, like using the right amount of insulin at the right time. I'm not making any grand pronouncements about anything. Or they just are trying to fence off the people that they've somehow gotten to come into their group and keep them there. Because I feel like the other thing is, what they know for sure, is, if they leave their group and come to mind, they're not coming back. So, like, I think it's like one of those, like, you know, opposite of, if you love something, set it free. I think what they're saying is, I've got numbers. If I let them go find out what they're saying at Juicebox, I'm not getting them back again. So, and that happened to you, right? Yes, yeah, yeah.
Theresa 17:20
Yeah. And I didn't even listen to the podcast until after we had the CGM, because I, you know, I left the group because it was just overwhelming. And then once we had the CGM, and I kind of started to figure out what was happening in between meal times and overnight and things like that, that's when I started listening. And I didn't start at number one. I started by like, group recommendations for new listeners. And they were, kind of, the numbers were kind of all over the place, yeah. But the one episode that really hooked me in was the one where you talk about, I think it was the M, M S, and like, figuring out, like, if I eat 1m M, what does this do to my blood sugar? If I two, what does it do? And just process of elimination and just just figuring out, you know, how long did this impact it? Why did it impact it? And that's kind of where I became obsessed with, like, figuring out what the food does and and how to avoid those spikes. Yeah,
Scott Benner 18:08
that's awesome. Yeah. It's far too often that we think more about how is the insulin impacting us, when we should be thinking too about, How is the food impacting us, and how is the food impacting the insulin, and how is the insulin impacting the food? Like, there's it's not just as simple as, like, I counted my carbs and I did the math and then whatever happens, happens, and my throat up to God, that's not what's going on. There's more going on than that. It's not that complicated. It turns out, if you listen to it discussed on a podcast, that kind of just kind of melts into your head. And I have to
Theresa 18:38
remind myself of that all the time, because just the other day, you know, she's turning 14, and she's eating random things without telling me, and she's pretty she's almost completely independent, but she doesn't always come get the insulin pen and she'll eat a Jolly Rancher that's sitting in her room or whatever, you know, but it's interesting to think of like, how can we reduce these spikes and still live normally where I'm not Like patrolling her all the time, because that's what that's a real point of contentment in my household. It's like I'm overbearing and I need the control all the time, and she's trying to figure it out. So I actually asked her to listen to some episodes too, and she begrudgingly, I think, listened to one or two. But I do think it helped her, because I can see her making different doses depending on what she's eating, and thinking more about the food and the impact. And, you know, sometimes we have those terrible highs, you know, I find myself going, what's going on, and then I just remember, like, just give her more insulin. Like, what are you doing, staring at this number, even though you gave her a couple units half hour ago or whatever. You know, we're now 60 points higher. I can give more like, and I think that's where I was stuck for a long time, is that whole like, two hour holding pattern of like, I gave insulin and I can't do anything about it for two more hours. And I was really stuck there for a long time. And then I was, like, I treated it when it was 190 well now we're 260 and I'm still staring at it because. Hasn't been, you know, quote, two hours. And that's what really kind of changed how I managed it was, like, I don't have to wait that long. Does that make sense? Also,
Scott Benner 20:08
the randomness of someone told you two hours. Sometimes people get told three hours, right? Yeah, right. I've heard people been told six hours, wait six hours and then treat again, six Yeah, no. It's the insulin action time. Like, generally speaking, probably lasts about six hours in your system. But, you know, Oh, you don't want to stack. And then, you know, of course, you don't want to stack, but it's not stacking if you need it. That's Bolus thing. And, you know, like, right? It's awesome, by the way. It's great that she begrudgingly listened, but that it actually was valuable for
Theresa 20:36
I think. So she'll never admit it, but she heard it, you know. I mean, try to
Scott Benner 20:40
put yourself in her shoes. Oh, yeah, yeah. Your mom comes to you when you're 14 and says, I want you to go listen to this Lawrence Welk fella. Oh, wait, that's too old for you. Johnny Carson. Go listen to Johnny Carson, because I think it's hilarious. And he's gonna watch it, and you're gonna be like, I don't I don't know what these old people are talking about. I tried to show my son something from All in the Family last night, and I was trying to make the point about how, you know, like, he's always running around talking about how freedom of speech is very important. And I'm, I'm happy he thinks that way. And I'm like, Look at what you could watch on television in the 70s. And I played him a clip he didn't even hear the content. He was just like, this sucks, right? The look of it just sucks. They're just sitting there talking. And, you know, I said this is probably a cultural pivot point this television show, and he's, like, it sucks, so, you know? And by the way, he agrees with what was being said inside of the clip, and he agrees that it's important for people to be able to speak and like, this whole thing, but like, it just didn't look the way it was supposed to look to him, right? You know, because the way the world shined up for him, and it moves faster, and, you know, there's sound effects behind it and stuff like that. Your daughter is probably the same way. She's like, my mom gave me a podcast. I don't even know what a podcast is. Oh yeah. And there was this old guy, and he was talking about insulin, and, oh, my god, he doesn't even have diabetes. And yeah, but listen, tell her I agree with her.
Theresa 22:05
Yeah. A couple weeks ago, something came up, and I said, I'm a pretty fun mom. And she's like, your idea of fun is listening to a podcast about diabetes.
Scott Benner 22:14
You're not fun lady, by the way, they're not fun either. They're not. No, they're totally not. This is the first generation of kids that suck a little bit. They do. They absolutely do. You're right. They don't really do anything. They just talk to each other through text chains and laugh at memes and, you know, say snarky about like, their friends, but privately, like, I don't know, like, what, you know what I mean. So she has
Theresa 22:41
a sister also that's 19. So I have another generation up of a daughter. She's a much better communicator and open mindedness. And my younger one is just so much more closed off. And I see that more and more when I work with middle schoolers. They know everything, and they're not even willing to, like entertain ideas. They just know everything. And it's it's frustrating. Yeah,
Scott Benner 22:59
listen. I mean, every kid thinks they know everything. That's fine. I think I know a lot. I think the bigger problem for them is that they're being siloed, you know, by what 14 year olds agree with, by their social media feeds. They get that reinforcement constantly of the thing I think is right, because my my shiny thing told me, right, yeah, you know. So there's no reason to go wonder about anything else, because the thing that I have in my hand, the magic box, it like it agrees to me all the time, and it feeds me exactly what I want to see all the time. Listen, the other day, my son said I was thinking of getting a leather bag for work. My wife and I have been inundated with leather bag social media post. No, kind of crazy. Never seen them before in my life. So if your kids out there, you know, having thoughts and listening to certain stuff, they're gonna just gonna get it fed back to them. But that's not why you came on the podcast to figure out how corporate chills are controlling our children, right? What did you want to come on and talk
Theresa 23:58
about? Nothing really in particular. I think the biggest thing was that a lot of the Facebook group and somewhat the podcast is really geared toward pump users, at least. That's what I think a lot of people think. And I think it's important for listeners and people in the Facebook group to understand that you can take everything that you say and you do and the success that you have and apply it to MDI long term, my daughter has no interest of using a pump. The deal is, is the Dexcom is a non negotiable, you know, we have to have that. But whether she gets on a pump or not is her decision, and she is holding out. And I think mostly it's because I want her to get a pump. Because right now I'm at the pump pretty much, and it's just a, you know, a battle wills, right now, she doesn't want it. She doesn't want anything attached to her body. She'll even try it, but yeah, like long term MDI, it's hard, but you can have great success on it. And I think people get overwhelmed and think of pumps the answer. And I know people who have pumps and that pump wasn't the answer.
Scott Benner 24:55
I have to tell you a couple of things here. So first of all, preach, because I. I am constantly hit by people who are like, hey, the podcast doesn't have any information about MDI in it. I'm like, the information is about insulin. It doesn't matter how you get it into your body, the ideas will work overwhelming. So I'm glad that you had that experience. I also think that you're probably two, maybe three years away from her bringing home the scruffies looking boy she can find to see if you will say, Don't go out with him. So you're gonna have to tell her how much you love him when she comes home with that kid, right? Yeah, reverse psychology. Oh my god, you're gonna be like, Oh no, he's awesome. Yeah, I can't wait for can you bring him over again? I'd like to chat with him. I like him more than I like you. I swear to God, I'm thinking of leaving dad for this boy. Don't tell anybody. I know it's creepy. Now you want to lean hard the other direction. When this happens, definitely going to happen, by the way, because I could see her wanting to argue with you already. Just Oh, for sure. Did you do this with your mom?
Theresa 25:47
No, actually, I was a very I mean, looking back, I wasn't an arguer. I was disrespectful. But back then, it was different your person. They weren't over your shoulder all the time. I don't remember having a lot of points of contention with my mom. I just
Scott Benner 26:00
like, my mom didn't even talk to me. How could I argue?
Theresa 26:03
My mom worked afternoons. She was a nurse, so she worked afternoons forever. So like, I would go to school from eight to three, and she went to work from three to 11. I would only see her, like, on weekends. That's great.
Scott Benner 26:13
Take high five at the front door, and then, right that was the Oh, so you're kind of like a latch key kid? Yeah, totally. But you're up your kids. You're with your kid all the time. I
Theresa 26:23
wouldn't be, but diabetes, you know, makes that a little more difficult than it would be if she didn't have diabetes too much
Scott Benner 26:29
or or, do you think no?
Theresa 26:32
Well being MDI, I think I'm definitely a much more hover. I try not to bother her. I only text her when it's getting to the point of like, okay, I don't know if she did anything or not with this blood sugar number. I need at least text and say, Hey, you see this. And usually she lie to me and be like, Yeah, I fixed it. And then he comes home, and she always throws her pen needles into her purse. And I'm like, why is there only one pen needle in here? This means this was lunch. Where's the correction you told me you did. So that's kind of how I catch her in that. But usually she handles it, but and I try to stay out of her way, but she doesn't wake up at night. So I haven't slept in a long I mean, I shouldn't say I haven't slept, but, you know, several nights a week I'm up dealing with it, which is hard.
Scott Benner 27:16
What do you think when you when you step back from this and you and you say, okay, in the short term, I feel like this is what we need to be doing. But when you step back and wonder about the long term, what are the things you worry about?
Theresa 27:29
I worry about her losing her eyesight. I worry about her losing limbs, like I worry about all those long term complications. I worry about the highs more than I worry about the lows, honestly, because up until this point, she's good about treating her lows, you know, like when it happens, she's she's not waiting, she's dealing with it, the highs, I worry, just for long term effects. What about, like,
Scott Benner 27:49
interpersonal or do you have that? Do you have a concern? Or, am I, am I introducing this concern to you? Do you have the concern that she'll be healthy, but we won't talk? Um,
Theresa 28:00
you know, that's a great question we read. She recently started going to therapy because I've been noticing, like, like, we just argue a lot, and it's not always about diabetes. It's just, if I say, Look up, she's, like, I look down, like she's has to be opposite. And I kind of worry that, like, with medical trauma, like, maybe this is part of it. And she went to her first therapy appointment. She came out, and I said, How did it go? Because we do have a good relationship. I shouldn't make it sound like we don't we do. And she's, like, talked about you the whole hour. Great. Glad I'm paying for this.
Scott Benner 28:34
That lady really helped me see What a bitch you are, exactly,
Unknown Speaker 28:38
exactly I
Scott Benner 28:41
tried to tell her, you were just trying to be a good mom, but she said, No, it sounds like your mom's horrible well, so
Theresa 28:47
now I go back for the second appointment with her, because I'm like, All right, go ahead. Talk to my face now, you know. And of course, she doesn't, but you know, she's the lady starts to ask her about her diabetes, and she's like, my sister's a type two, so I totally understand it. And then starts to give like, advice, and I'm like, Oh no. So we walk out, my daughter's like, we're not going back there. It's like, I can't listen to her diabetes crap. I can't, Mom, isn't
Scott Benner 29:13
that something like, I'm not here for your personal stories. Just, I mean, if you listen to Eric on the podcast, talk right? Like, there's, oh, she's amazing. There's things you're supposed to be listening for, ideas you apply questions, you ask to move people in directions of thought. That's it. Like you're not there to tell people about your type two sister, your cat that lost a Paul, or, I didn't mean a curse or sorry, but like, you know you're not there to tell your stories. Like you're there to facilitate the conversation.
Theresa 29:39
Yeah, and I had to actually interrupt her at one point. And I'm like, you know, we're really not here for diabetic advice. We have that handle. You know, she's a good a, 1c her doctor is in no shape worry. She's like, well, if she would just get on a pump, you know, it'd be so much easier. You'd have so such better control. And I'm like, lady, you have no idea. Yeah, control we
Scott Benner 29:57
have about the control we already, we've already. To accomplish? Yeah, honey, it's not your podcast. It's a it's a therapy session, right? You want people to pontificate. Listen to me. I'll talk forever about shit that I think. That's not what you're looking for. You're looking for, you know, a good therapist hard to find. Yeah, I know. So
Theresa 30:13
we're switching. So we're in limbo right now waiting for a new one. This was just like two weeks ago that this happened, so we're gonna try to go with our endocrinologist suggested somebody in her office, so we're going to try there and see. I just need someone to understand diabetes, not to talk about it with her, but to know like that's a stressor, and understand what kind of stressor that is. I
Scott Benner 30:32
have to tell you something. I am not a qualified mental health professional, but I think people should start sending me their case to talk to. I think your kid, yeah, I just let her come on here, and she could bitch about you for a little bit, and I'd tell her she's right, and then I'd tell her she's wrong, and I'd tell her, no, it would be end of it. We'd be all good. Maybe we don't need therapy. Maybe we just need an honest friend who knows what the hell they're right? Yeah, talking about a little bit. All right, that's my next job. I'm going to be a what do they call it? What is that pretend job? People have life
Unknown Speaker 31:01
coach, yeah,
Theresa 31:04
I knew exactly what you're doing for there.
Scott Benner 31:05
Yeah, I would be no offense though. I mean, I guess there's no way for me to say no offense to life coaches, but, like, no offense, right? Yeah, your common sense buddy, like a little doll that just tells you when you're being a shed, right? I could do that all right. And she's
Theresa 31:20
also had some other medical trauma. So when she was diagnosed with type one, we also found out she had Hashimotos, of course. So she now takes Harrison for that. That goes well, but, you know, I did a huge deep dive into type one, and I feel like I know so much about it, but I kind of never really did a deep dive in Hashimotos. So that's, like, my next thing. I've listened to all your podcast episodes on it, but I'm in a group online, and they just talk about different foods they should eat and different eat on I'm like, Wow, maybe I really need to, like, get some more information on this, but at that point, my brain just couldn't, like, handle any more information, and I forget about it. You know, you take a pill and you're done. I know
Scott Benner 31:57
I could have Addie back on and she could really dig through it, but I have to tell you, I think it would get so far into the minutia of Hashimotos, I don't know that people would follow it or listen. I
Theresa 32:07
sometimes think that that's why I haven't went further. Because when I start to I'm like, Oh, they're like, the air matters, the wind. Like, how do you dial this down and figure out, like, what's affecting you as a person? So I just kind of wash my hands of it. She takes her pill. We get her blood work done every six months, and we haven't thought too much about it. But she does also have that. So I wonder, like, how's that playing into the teenage mood swings and the, you know, all that kind of stuff, her numbers are generally fine with that. We've had to do some adjustments with her tears and but not do too much. Yeah,
Scott Benner 32:38
your story mimics mine, like, I have a daughter who has type one and and, you know, takes tears in as well. And, you know, every time something gets said that's crossed, you're like, is this hormones? Is this bad mood? Is this tired? Am I being a jerk? Like, is your thyroid Did you skip your thyroid medication for three days? Is your blood sugar moving right now? Like, you can't possibly know all those things you know. So you do your best to keep things steady, and then you know, and just assume that I'm being a jerk, or she's being a jerk if somebody's having a problem. I mean, it's tough for raising kids. I also I find myself recently, more and more coming to the conclusion that one day, I mean, not that I didn't know this before, but it feels like it's getting closer now. Like, there'll be a day where I just will not have any influence anymore, and then whoever she is right there, like, That's it, you know what I mean? Like I did, but I was, I did what I could do, like Kelly did what she could do, and now she's going to go live her own life, and probably not going to ask us for our opinion ever again, or only if you know, things are upside down, yeah,
Theresa 33:41
it's scary to think about, yeah, you know, I'm also, you know, some people, you think about, like, Oh, you were diagnosed when you were so young. And, you know, I know your daughter was way younger than mine, but like, I think my daughter was diagnosed at a perfect time. She hadn't really become herself yet to where I could still, like, I taught her everything I knew about insulin, and I, you know, tried to get everything down pat if she would have been diagnosed at 13 versus nine, it would have been a way different store. I really feel for people who maybe were diagnosed in those really tough teenage years, because she would have been completely non compliant if it happened right now, so I had a little bit of time to, like, shape her and mold her before, you know, being
Scott Benner 34:19
bad first day, you would have been in trouble. Oh yeah, it would have been bad. There's an after dark episode about the girl that had to go into a home, right? And then just pregnant. Her story is, to me, is like it feels so much around what you're talking about, like timing, you know, and the things you can't impact, like you're listening, sounds like you're a really involved mom, and you're you're trying really hard. It's awesome. Like that girl I just mentioned, she didn't have that kind of parents, and, you know, and just like that, like you don't get reasonable direction catches you at the wrong time for whatever reason. You know, a couple of those things pile on top of each other, and the next thing you know, you're having your own worst nightmares happening to you, right? And then it's hard for you, or. People like me or anybody else listening to think like, well, I don't want that to happen to my kid. And then you keep putting in these efforts everywhere, and you do one like, I do wonder listening to you like, will your daughter grow up being a person who understands her insulin, takes good care of it, keeps herself safe, has her health in line that way? But, you know, has resentment towards how it got done, and is that maybe the cost of doing business like I don't know. You know what I mean, you know.
Theresa 35:26
And I've thought about that, and I thought, you know, do I be her friend now and just relax on it, let her ride higher. I'm her mom, not her friend. My goal is for her body to be as close to non diabetic as possible, so without being too overly crazy about it, you know, I don't really need to be her friend right now. I just, I need to be your mom. And hopefully, in the end, she'll realize that she's got a really dark sense of humor and like, she's really She's very smart and very funny, like people on the outside looking in to be like, Man, you guys really go at it sometimes, but sometimes it's our love language, you know? Like we just quit back at each other, and at some point she'll go too far, and I have to cut it off. Like whoa. Like, stay in your lane. I'm still your mom. Yeah, that's just our relationship right now, listen,
Scott Benner 36:11
I think you're not you everybody. You're walking in a line, you know what I mean, and sometimes you stumble one side of the other, etc, but it sounds like you're doing a good job to me. Oh, thank you. Yeah, please. I mean, I don't add
Theresa 36:24
on the medical trauma. So let me fast forward then to last December. So December 2023, this just about a year ago. You know, everything had been pretty smooth for a while. Diabetes was going fine. She goes to a birthday party at Sky Zone, and of course, I don't stay. She's, you know, 12 years old at this point, and I get a call maybe 20 minutes after I dropped her off of a screaming Mother, you have to come now quick. Lucy's hurt. Lucy's my daughter. Lucy's hurt. And I'm like, what? And she's like, come. Now come and this this person's nurse. This person is a nurse, and I'm like, is she okay? Yes, but get here quick. I mean, I drove Luckily, I had didn't get too far, drove there as fast as I can. My husband was with me. Get there. My daughter is laid out on the trampolines. She's at Sky Zone, and she has broke both of her legs, whoa, oh yeah. And she's laying on a trampoline. Give
Scott Benner 37:21
me a second. I know she broke her legs, but now I'm I'm having trauma. Give me half a second.
Theresa 37:24
Oh, mind you, this is a, like, School Night Out type thing. There was a birthday party, and then, of course, it's a Friday night, so there's tons of friends from school, so everybody has been cleared the trampolines. They're all staring at her. I beat the squad there, so they call it EMS. They have her covered in a blanket. So I walk in, I step on the trampolines to go to her, and then they're all screaming at me, Stop, don't move her. And because I'm stepping on the trampoline, it's like moving her body, you know? And so I get off real quick, so and they won't let me near her. I can only see her. She's about 10 feet away from me. And the other kid's mom, whose birthday party was is on the trampoline with her, like, like, cradling her, and they have a blanket over her legs. And I look at the worker, and I was like, Is it out of her skin? And they're like, We think so. Oh, my God. And I'm like, What do you mean? You think so? Well, she has pants on. It's hard to tell. I'm like, Okay, I mean, I don't even know what's happening in my body at this point. I'm just, you know, in a daze, and so they remove the EMS. Gets there, they get her on a board and take her off. And I can see like her leg is just not the right way the bottom of her leg. So she ended up breaking both her tibia and her tibula completely cracked in half. Didn't come out of the skin though it, but you could see it where it was about to come out of the skin.
Scott Benner 38:39
Sorry, not almost. I don't understand what happened. So
Theresa 38:44
going back and they won't let me see the tapes, that's apparently you can't ask for that as a customer to see their footage. It was sold out. That you know, if you've ever been to a Sky Zone, they get pretty packed. It was sold out. They had closed down an area for younger kids, so it forced the older kids to be more of them in an area. Well, one of her friends was on the same square as her, and, like, double jumped her. So when my daughter was up in the air, the other girl bounced down. So when my daughter came down, the force of the trampoline was coming up. Apparently it's pretty common, like, sadly, it's common. But so she broke her right Tibi on fibula, and actually, she didn't break her left leg. She broke her left ankle, so the bone wasn't so EMS gets there, they load her up. What really warmed my heart is the minute I walked in the trampoline. Guy goes, I know she's a type one diabetic, she told me, and I've went over that a million times with her. Like, if you're ever not with me and somebody has to treat you medically, you need to say this. This is really important. So I was very proud of her at that moment. Yeah, and she's white as a ghost. She's not crying, but she is, like, you can tell her body's in shock. So they get her on there. We hop in the they want to take us to the nearest er, and we have a lot of hospitals around us. And like, No, I want to go the extra 10 miles and go to Children's Hospital. She's diabetic. That's where we need to go. So they kind of fought with me a little bit, because they're like, well, that's not. Protocol or whatever. And I'm like, I don't care, that's where we're going. We get there and they do some X rays, you know, they tell me she she's going to need surgery, like she needs a rod and screws put in this one leg. And I tell them that She's diabetic. And the next thing is, well, we're going to control that from here on out. And I was like, what? And they're like, Well, you're not, you're not, you're not allowed to give any more insulin. You can't give her anything from home. Like, if you have insulin pens with you, we can't use them. And I was like, well, she's independent, if you could just call and because we're at the same hospital that she was diagnosed with type one at, and we have a great relationship with our Endo, I was like, call the endo office, like, they'll tell you, like, we're cool, you know, like, you don't need to, like, harp on us about this. Apparently, hospital policy is is, once they're admitted, I am stripped of every right I have. They're wanting to take her decks come off, they're not letting me give insulin. That was very scary for me, and that's the ER, so I thought, okay, it'll get better once they get on the phone and get the right people, whatever. So we get admitted, we're up in the room. It's the evening, you know, the night before surgery, and, you know, she's, like, 300 I'm like, Hey, she needs some insulin, man. Like, I understand, like, her body's going through shock and her sugar is going to jump, but, like, we've been there now for a minute, like, she needs some insulin. And they're like, Okay, well, we'll call, you know, we're going to put her on a sliding scale. We don't really correct unless it's, you know, meal time. And I'm like, well, that's not how we operate. Like she's not used to feeling 300 like this is off for her. You know, they talked about it, and they came back and said, we've decided we're not going to give her any insulin, because she has surgery in the morning. At that point, oh, my God, it's happening. Like this is happening to me. I've been stripped of my rights, and they don't know what they're talking about. So the first night, we suffered it out. In the morning, I asked to speak to the endocrinologist, and one came in who we don't, it's like a group of, like 10, so we never, we don't see this woman. But she came in and, you know, she was very pleasant and very well spoken, and explained that it's okay to be 300 and she's in a lot of pain. And I said, Yes, but she's also going to have to heal from surgery later today. Like, she doesn't need to be 300 Well, we'd rather have her 300 going into surgery. And that just blew my mind. What about 200 Right? Like, I wouldn't even be happy with 200 can we?
Scott Benner 42:14
Can we meet in the middle? Yeah, exactly right. Yeah.
Theresa 42:17
So that was when it, you know, it kind of hit me like, Oh, this is going to be a fight. This is going to be a big fight. So she had surgery. She was actually came down a little bit before surgery, and she stayed steady while she was in there, but she was still much higher than I would have liked. And then afterwards, I thought, okay, we're going to we're going to take back control. And I asked to speak to the endocrinologist again, and she's like, No, I'm sorry. While she's admitted, you don't have any right to give her insulin. And that just really stopped me in my tracks. I was like, it scared me, you know, like in the future, if I'm not here to fight for her, and I'm losing this fight, but at least I'm fighting, you know, is she going to know how to navigate this kind of situation on her own? And I thought, well, this is a time where I need to show her like they're not always right. And I know that sounds terrible, because I really do trust the medical profession. I do like my my mom's nurse, my sister's nurse practitioner, like I do have faith in the medical community, but at this moment, I thought, I need to teach her that they're not always right, and that you know your body and you know we have to manage this disease. So I talked to them again, and they're still they. They started to agree to correct every three hours. So I thought that's a start. Well, that whole day, she rode high. And then when meals would come, they do this thing where two people have to look at the insulin pen or syringe, whatever they were using. Her food would come. I'd ring the buzzer. The nurse would take 10 minutes to come in, and then she'd be like, Okay, and this will be, you know, 10 units or whatever. And then she'd be like, I have to get a second pair of eyes on the needle before I can inject. So her food's ice cold. We're 20 minutes in, she's starving, and we're waiting for a second. And I said, Can I be the second person that looks at the pet? No, you can't be it. I'm like, Oh my gosh. So it just went downhill. We were in hospital first three days with that, and I ended up just giving injections when they weren't in the room. Oh, I had to. I mean, it was, that's
Scott Benner 44:03
what most people end up doing. But yeah, yeah, yeah. So,
Theresa 44:07
so then we have our next endo appointment, and we never got to see, like, our endo while she was there, because she wasn't one on call. And she told me when we went to our next appointment was like, next time that happens, just my chart me, message me personally, and I'll make sure to take care of it. And that made me feel a little better. But then we wanted to change some stuff when she went to camp this past year, and this is after the broken legs, and the endo fought me on it, like she didn't want to change, like her correction factor and things like that. Like we were looking at camp and she kind of said, you have to do what the school nurse says. And I was like, boy to my face, you tell me, oh yeah, just call me. But then when we need you, like, you revert back to, well, this is policy. This is how we do it. And that, to me, is very frustrating,
Scott Benner 44:53
yeah, well, it's pretty common as well. Yeah, also, you fought to go to that hospital.
Theresa 44:59
Yeah. I know I paid extra to go there, you're probably like, damn it, like
Scott Benner 45:03
the wrong one. It is not an uncommon story to get into a hospital. They don't know what they're doing, and your diabetes is not actually their concern. That's what you learn, is that the legs were their concern. They apparently can't be concerned with two things at one time.
Theresa 45:18
Well, and I asked my end, I'm like, can't we put something in her chart that, like, if we're not admitted for something diabetic related, Let's just not talk about it. But like, because we're not there for that, if I was there and she's in DKA, of course, by all means, help me out. But if we're there for something random, why? Why is her diabetes even a question? Yeah, I know
Scott Benner 45:38
I've had friends in the hospital with type one, and they just get somebody to bring them their stuff, and they hide it in the room and take care of themselves.
Theresa 45:44
How sad is that? You know, like, I'm typically a rule follower, so I don't like to go around the rules or bend the rules or but in this instance, it was, it was absolutely absurd. And you just felt like you were talking to a wall. You know, it was like you weren't getting anywhere. They were just like, sorry, this is how we're going to do it.
Scott Benner 46:02
Please don't look at me with your dead eyes. Tell me there's nothing you can do.
Theresa 46:07
You know they were all pleasant. They were nice about it, but it just, I know they're and then I have to, like, check myself, because I'm like, Are they looking at me like I'm crazy? Because then they would say you are too worried about her numbers, like you don't need to be that worried. And I'm like, Oh, my God, they think I'm crazy. Are they gonna, like, put a complaint in that, like, I'm, you know, treating my kid inappropriately with diabetes, like it's then that fear said, and of like, okay, don't look crazy. Just go with it.
Scott Benner 46:33
Don't. No one's ever not looked crazy, trying not to look crazy, by the way.
Theresa 46:39
Probably, it was a lot happening. It was just a rough It was a rough few days, and then she was stuck in a wheelchair for for almost four months as her surgery healed. So that was really tough, you know, figuring out, you know, she was so much less active. I
Scott Benner 46:54
mean, did they look later at her legs? Was this like a genetic thing? Was it structural, or is it just the the force from the trampoline.
Theresa 47:02
I asked that because I was worried about, like, calcium, or, you know, something like that. And they did a whatever, a bone whatever during the surgery, and the ortho said that, no, it was just, it was a force of impact. He's like, wrong time, wrong place, that sucks. And, you know, he's like, was this? He said, was this a playground accident or trampoline? I'm like, trampoline. He's like, those are the only two broken lakes we get in here with kids. I'm like, Oh, interesting. He's like, I would never take my kids to Sky zones. Sorry, Sky Zone. Is she athletic? Not really, but we do, like, she doesn't play, like, sports, but he's pretty active outside. Like, we have a pool, we have trampoline. She's running around all the time, but not, like, workout athletic.
Scott Benner 47:45
I just wondered. Like, trust me, I'm not blaming her, but like, if I put, like, a super athletic person in that same situation, like, do you think they would have rolled with it better, or fought it? Like, not fought it? You know what I mean? Like, sometimes there are people just more in control of their bodies. I don't know if that makes sense or not, but
Theresa 48:01
yeah, it does. Like, could she have landed better? Could she have seen that impact coming, or absorbed it better with her legs? I don't know. I mean, we have a trampoline at home, so she's no stranger to like, how how the balance feels, if that makes sense, right? But those trampolines are so much more powerful. Yeah, you know, thick within our backyard, $150 you know, trampoline, which we don't have anymore, by the way. Oh, my God, she was really mad at me when I gave that away.
Scott Benner 48:27
Gave it away, settle on fire. Oh, that's crazy. And then how about her blood sugars through that the healing process. So,
Theresa 48:34
through the healing process, she was, she was pretty much fine. She developed some really bad like blood blisters from the medical tape, which were probably the hardest part of healing because they were so sore. And I really worried about, like, is she not healing better because she's diabetic? But, you know, we have a good a 1c like, I think our last a 1c was 62 maybe. So I knew it probably wasn't anything diabetic related. The hardest part was getting the basal right with the lack of activity, okay? And increasing that to a point to cover all that food with very little activity. But then she would have to, like, go to therapy, because she was in therapy, like twice, physical therapy like twice a week, and then she would be low all night long, because she had physical therapy that
Scott Benner 49:18
day, and you had their and her basal was jacked up all day long, too,
Theresa 49:21
exactly, right, to cover the inactivity, right? That was the hardest thing was, was just figuring out, like, to being proactive, to what the day was about to bring when she was laid up,
Scott Benner 49:31
yeah, and how is she doing now? Like, did she heal? Well, she did. She's
Theresa 49:35
completely fine. She's released from any kind of medical thing. She can do anything she wants, and they said her leg will never break again. That leg will never break again, and it's stronger. What's really crazy? If you go back through my Facebook post, you'll see it because I posted it in the group. So you know how you have the two bones in your legs? Well, the the bigger one is the one that they put the rod and then the screws in for from the knee down from the knee to the ankle, but the other bone. Bone. That's the smaller bone on the back of your leg. They just left it broken. They said she don't need it no more. It's literally in there, broken. Is that weird? Making me
Scott Benner 50:09
upset? They
Theresa 50:10
said eventually it will fuse back together, like crooked, but she doesn't need it because she has the other that she has the rod in there. Now
Scott Benner 50:17
it won't cause a problem later. It won't, like, grow to something or heal to something, or they said, no, they said it. They also didn't know anything about it. Diabetes, I just want to point that out. They didn't, yeah, didn't. So when she gets a tail in that leg, I think we know what's going to happen,
Theresa 50:31
right? And you know, she can feel the screws, which is really weird to me, like she feels them in her ankle, and if she pulls her skin right, you can actually see the head of the screw, which is super creepy to me. Oh yeah. How does she
Scott Benner 50:43
describe the experience and the pain? Does she remember the pain? She said
Theresa 50:48
it was only painful when she had to move. So when somebody didn't move her, he was fine. But when we got home, I think that's when, of course, we live in like a split level home too, so there's stairs everywhere. So that was really trying. Of like, you know, all of our bedrooms are upstairs with the bathroom. Well, of course, she want to sit in her bed, so she wanted to come to the main floor to be in the living room or wherever. But then the bathroom required stairs. So pain level, I think just going up and trying to get up and down the steps was the worst. And getting in and out of the house okay, and I made her go to school, looking back, if she had a few weeks off, but they offered to do homeschool instruction. And I thought, no, she really needs, like, the socialization. And looking back, I'm not sure if I made the right decision there, because I think, I think she was bullied a little bit. I don't even want to say bully, just, you know, picked on for being in a wheelchair, because the other option was a walker. And she's like, Mom, they will kick a walker out from under me. There is no way I'm taking a walker to school. Where the hell did you lose? You took
Scott Benner 51:49
the wheelchair, right? Where do you live? I just wanna make sure I don't move there. Find this paper in Ohio,
Theresa 51:54
but it's middle school, you know? Okay, they're kids. She's like, I can't walk in a hallway with that Walker. It won't work. They'll kick
Scott Benner 52:01
it out from under. Yeah. He's like, they totally will. Oh, my God. Well, listen, she did it, right? Is she okay? She's fine now, yeah, she's not talking about, like, I shouldn't have done that. Or, although she did go into that, she did go into that therapy session and talk about you
Theresa 52:16
for a while, she did talk about me the whole time. I don't think it had much to do with broken legs. Great. If
Scott Benner 52:20
the whole thing was, like, she made me go to school in a wheelchair, they said they'd send my work home. But no, my mom said I should go, tough it out,
Theresa 52:28
walk it off, yeah, quote, unquote, that's totally the mom I am, though, like, I, you know, I'm a teacher, so, you know, suck it up. Just do it. You're fine. You live through it. Like, that's just kind of how we live. So, and she, she adapts well, you know, and she likes school. So when her whole world was falling apart with these broken legs, I thought, I'm gonna, I don't want to homeschool her and keep her away from the one thing that she actually misses. No. I mean, I take looking back, it was rough.
Scott Benner 52:55
Listen, I wouldn't I mean, you know what? I mean, most of the parenting is a coin flip. You they didn't set her on fire. I think she's fine. Exactly. She made it, yeah. Does she have a core of friends?
Theresa 53:04
She does. She has a few friends that are real close, and they were real good to her, and that, you know, they got to leave class early to help her carry her books. And so I think she enjoyed the attention for the most part. Amazingly enough, you know, this happened in December. She was walking by, like April, maybe fifth or sixth. It was real early April, and once she was walking like it was, almost like it just magically disappeared. Once she was upright and could bear the weight, she healed really
Scott Benner 53:31
fast. When quickly after that, very quickly. Did you need any temporary accommodations to send her back to school?
Theresa 53:37
I did. So I needed, you know her leave class a little early for certain things. The nurse there, I worked for the school system for a couple years. Actually worked there while she was diagnosed, so I made real good friends with who I needed to so I know the district nurse very well, so she was really cool about it. So they did everything they needed to do. Okay,
Scott Benner 53:55
it wasn't tough towards the end here, unless you have something else you want to talk about, I'd like to pivot back to something you you mentioned earlier. So I want to make sure I've got you've had a chance to talk about the things that were on your mind first. Oh,
Theresa 54:06
yeah, you feel good. I think the only other thing I wanted to talk about was now I work. I work at a community college. I'm the instructor, and we do this summer program called kids college, and it's really cool. Ages K to six come for us for a month in the summer, and we just do really cool things with them. I've spent all this time with diabetes, and you know, I understand it so much. And anytime I meet someone with diabetes, I try to, like, educate them a little bit. But what really sticks with me is this kid's college, I had a parent reach out, and he said, Hey, my daughter has type one. She was only eight years old when she first started coming. He said, Every year we've reached out trying to see if it was okay for her to come. And each year, we've been told, No. I just wanted to reach out again to see if, this year, if there's any change. And I was like, Well, of course she can come. And they're like, what? I'm like, Well, my daughter's type one. I'll just meet up with her at lunch every day, and I will help her dose. And she's on an Omnipod and a, you know, g6 I said, I don't know that. Interface for a while, because my daughter's MDI, but I'd be happy to, like, follow her, or whatever you want me to do. And these parents, like, were over the moon appreciate. They sent me flowers the first year, like they said that their daughter has been turned away from every summer camp because she's type one. And I thought, oh my gosh, that's so sad.
Speaker 1 55:17
Yeah, well, it's nice for you to help. It was, and
Theresa 55:21
it's really cool to care for every summer. So this will be your third summer coming back. And I'm like, this is really cool. Just, you know, sometimes our kids might not get to experience things, but you know, my knowledge of it is helped another family. And that was,
Scott Benner 55:33
that was really cool. Very nice. That's awesome. So I would like, if you wouldn't mind, to spend the last couple of minutes telling me how you adapted what you heard on the podcast to MDI. So
Theresa 55:44
I started with, you know, I didn't really go in order, but then once you kind of organized the pro tips, because you were still making pro tips when I really started diving in. So the pro tips were huge. They really, in a nutshell, taught me pretty much everything that I needed to know in MDI, I just had to get out of that mindset of like, I don't know why she's high, or I don't know why she's low, and I think everything started to fall apart or come together once I got the basal right. So I didn't really understand. They just told me when we left the hospital, take nine units. That's all they told me, nine units of at that time, it was Atlantis, and then we moved to basal gar basal. Now we're on traceva, which is so much better just figuring out how much of an impact basal has throughout your day, because I think we had it so wrong. Because from where I started, once I started listening with you, I think she was at maybe 10 units at that point. By the time my basal tested her and figured out her basal, he needed 17 units of basal. Oh, okay, so nothing was going right. And he used to say, like, if your basal ain't right, nothing's right. And that that really stuck with me. Okay, this is where I have to start. This is my starting point. And it's not always easy to figure out your basal, because the thing I hate most about MDI is I can't change it once it's in. So every morning when my daughter goes to school, she she always yells at me, because she'll be like, I don't know, 95 and she'll be leaving for school. And I'm like, here, you need a unit in half. She's like, Mom, I'm 95 I'm like, I know what's about to happen in an hour. You're going to be 140 if you don't take this unit in half. When I tell people that, they're like, Oh my gosh. Like, don't you get nervous about giving her that? And I'm like, no, because I know what's about to happen when she walks into school doors. And that's something else she always used to say, is trust. I forget how you said it. Trust what will happen is what you think will happen or something. The
Scott Benner 57:30
problem is the way I said it was very clunky, but what I ended up saying was trust that what you know is going to happen is going to happen. It does
Theresa 57:37
almost every day. I think it's it failed me once she went low when she got to school. But, you know, Juicebox fixed it so adrenaline,
Scott Benner 57:45
like, you know, nerves, that kind of stuff, when you get to school. I did a talk with a bunch of kids in person a few months ago now, and I've said this in the podcast before, so I'll go over it really quickly. But one of them started talking about, I don't understand why my blood sugar just goes up at school. We talked about anxiety, pressure, stress, that kind of stuff. And then the entire group of kids was like, Wait, that happens to me too. And then they all just kind of out loud, you know, reinforced to each other that, you know, oh, gosh, there. I guess there's variables here that I don't know about.
Theresa 58:20
And, yeah, and learning from your podcast what all those variables were, because nobody was going to tell me that. No doctor was going to tell me. So sometimes at school, or if she gets called on in the middle of the class, her blood sugar could go up, or just figuring out all those variables and then trying to plan for them. And with MDI, you kind of, I still feel reactive in a lot of ways, but I could also be proactive by giving her insulin before school, changing her basal rates. If we know we're like, going on vacation and we're going to be more active, but really, that holding pattern of waiting for that basal to kind of kick in. Don't really understand. Why does it take three days for my change in place, but it like, catch up. Like, do you understand that? Yes.
Scott Benner 59:04
So, I mean, understand vaguely, like, be able to explain it technically, probably not. But that medication lasts, they say longer than 24 hours in the system, right, I guess. But then, why do I give it every day? Because there's a half life. So it becomes less and less efficacious as the hours go on. So you basically have multiple injections of it, multiple boluses of it under the skin that are working at different rates, on different at different times. And if that makes sense or not, like, so sort
Theresa 59:34
of, but then I think about it more, and I'm like, but if it's only good for, you know, 36 hours, or whatever, like, it takes longer than 36 hours when I up at a couple units to show in effect?
Scott Benner 59:45
Yeah, no, because that's just weird. Well, it is, but it isn't like so when you inject your basal insulin at noon, let's just say it's at noon. It's not working at full power immediately, right, right? So the first day you ever you put it in, you put it in. Noon. I'm just using noon as a number, and it takes a number of hours before it's working at its full capacity. And then from there, it's diminishing returns as the minutes and hours go on. You're not at full power at the beginning, you're maybe at full power for some time in the middle, and it wanes as it goes away. It's waning, waning, waning. It's not completely gone by 24 hours, but you put it back in 24 hours from now, you don't have full power from the second injection, but you do have some leftover from the first injection. And after you do a couple of revolutions like that, it starts to cover itself more completely. Does that make sense? It does. Yeah, it just sucks, because it's not very trackable.
Theresa 1:00:39
No, no. And then, and then you start to second guess yourself. Okay, was that the basal error, or was that the mist on the food I tried to figure out, or whatever? Yeah, so I feel like I just have to worry about it more than someone with a pump. And that's probably the hardest part of MDI. Besides getting that basal rate, it's just I'm always aware nothing's gonna work for me. I gotta do all the work so, and it definitely means a lot more injections. You know? Yeah, I would say that I correct her a couple times a day outside of food, at least some days, a lot, some days not that much, just because she'll eat more or less than I anticipated or whatever. Yeah, but she wants that correct. She doesn't want to pump right? Well, she, oh, so she doesn't necessarily want the injections, but she accepts the injections to avoid a pump. Yes. Does she ever tell you why she doesn't want to pump, that she doesn't want to wear anything on her body? Okay? And, you know, we've got, like, the demo pod and stuff, so I could show her, like, it's really not that, you know, it is. She just doesn't want it to be visible. She never wants it to be visible. So that's, and I think that's her way of having control of this, of somewhat of the situation. Yeah, nothing wrong with that. Yeah. And, you know, I'll do it as long as she wants me to. And like I said, she mostly manages, but I typically have to fix what she messes up. It's a pain when she decides that she wants a snack at 1030 at night and she misses the correct, you know, doesn't hold a sport, right? And then, you know, 2am that's where I'm getting out of bed here in the high alarm,
Scott Benner 1:02:07
you're like, Oh, good, beep, beep, I'm coming well. And
Theresa 1:02:11
then it's like, I have to, like, drill her. Because I'm like, Okay, what'd you eat when you take it? Because it's hard to manage with her, because I don't have all the information, right? When it's just me, I know what I gave, what she ate and when, but with her, I'm like, prying and out of her and she's half asleep. I'm like, What time did you eat the whatever you ate?
Scott Benner 1:02:28
How many gummy bears?
Theresa 1:02:32
Best guess? How many squeeze
Scott Benner 1:02:34
my wrist if you ate these potato chips I'm looking at on the floor. You know what's
Theresa 1:02:38
the worst is those stupid talkies. Talkies. They're like, this chip that's really popular with, like, the middle schoolers. They're this ungodly color of teal. Like, you should definitely not put that in your body. But they're really big with that age group, some kind of Mexican, like,
Scott Benner 1:02:53
I don't know, but any teal chip sounds awesome,
Theresa 1:02:57
right, right? Yeah, it can't be good for you. It can. She likes the snack on those, and we never seem to get those completely under control.
Scott Benner 1:03:04
Are there any foods occurring naturally that are teal? I don't believe no, it is
Theresa 1:03:09
totally not natural color and just the dust from them. Like, I'll find it in my house, like she'll eat one and then touch a wall and I see, like, teal fingerprints. I'm like, that's weird.
Scott Benner 1:03:21
Chat, G, P, T, says that any natural teal foods would be blue, green algae, certain heirloom varieties of corn, turquoise, dragon fruit, fiddlehead ferns, lightly cooked seaweed varieties. There are some process prepared prepared foods, like macarons, candies. Now, if those are processed smoothies, no, no, yeah, so fiddlehead ferns, if they're lightly cooked, dragon fruit, heirloom corn, these are teal. They don't mention your your your talkies.
Theresa 1:03:49
No, no, you'll have to check them out sometime there. I don't eat them.
Scott Benner 1:03:53
I don't believe I'm going to, but thank you.
Theresa 1:03:57
I clean them off my walls.
Scott Benner 1:04:00
That's awesome. Oh, my God. Okay, well, I appreciate you doing this very much with me. This is a fantastic conversation. You were terrific at telling your story and your daughter's story. I look forward to the many, many situations where you have to call in probably a hostage negotiator to help you have conversations with your daughter, and then one day, when she's 37 when the day she comes to you and just under her breath, as you're dying, says, Thanks, Mom.
Theresa 1:04:27
I told her I was recording. She's like, you're going to talk about me the whole hour, right? And I'm like, how's that feel after your therapy appointment last a couple weeks ago? Yeah, listen,
Scott Benner 1:04:36
if you really want this to dig in, send me a $40 copay.
Theresa 1:04:41
40. That's a steal, really?
Scott Benner 1:04:42
Am I not? Am I not pretending to charge enough? How much should I be Well,
Theresa 1:04:47
right now, we've met our deductible, so it's okay, but I told her, I said, you need to, either we need to find a therapist or not, because when our deductible rolls over in January, I'm not paying. It's like $125 an hour, really?
Scott Benner 1:04:57
Yeah, you get the information about. Her type two cat or whatever she told her about, right?
Theresa 1:05:02
That's what we walked away with, was, oh, they also gave her, like, a book of feelings, like she was five years old, a book of feelings, yeah, like, like, a way to, like, describe how you're feeling without having to say it, like, you know, like, like, like, the emotion emojis or whatever. And I'm like, oh, we need a new therapist. Oh,
Scott Benner 1:05:20
the book of feelings. $125 for that. I'll stop by the way. I don't know what the book of feelings are, but I'll put Benny other my own. I feel free to sell it to you for $45 so yeah, I just want to be very, very fair about that. What is this? A literal book. Core emotions, happiness, sadness, anger, fear, disgust and surprise. Nuanced emotions like melancholy, joy, frustration, euphoria and longing. Well, culture, perspectives on feelings, expressions of feelings, tools for emotional health, tips, wow, just stop rubbing your dusty fingers on the wall. Let's start there exactly. Suck it up and do what you need to do. Just rub your hands on your pants like a reasonable person, right? Lick your fingers like a normal human. It's awesome. All right, Theresa, hold on for me one second.
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