#1542 After Dark: Lighthouses
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Max opens up about bipolar disorder, body image, and the partner who supports her through complex mental and physical health battles.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome back to another episode of The Juicebox Podcast.
Max 0:16
My name is Max. I just turned 28 and I've been a type one diabetic for 21 years.
Scott Benner 0:25
If you're living with type one diabetes, the after dark collection from the Juicebox Podcast is the only place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma, addiction and so much more. Go to Juicebox podcast.com up in the menu and click on after dark there, you'll see a full list of all of the after dark episodes. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan.
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Max 2:01
my name is Max. I just turned 28 and I've been a type one diabetic for 21 years.
Scott Benner 2:08
That was perfect. So we're gonna keep going. You've been on the podcast before. Where could people hear you?
Max 2:12
So I'm on one of them. My first episode was a after dark episode. It's called life struggles. And then my second one was called peach clobber. And that one we kind of went over, you know, my name transition from Maddie to max and kind of what was going on. You know, just updating you on life,
Scott Benner 2:33
everything. Yeah, it was, it was a catch up episode. It was awesome. So what are we doing this time? I feel like you're the one person I track through their life. Honestly, yes,
Max 2:40
yes. And that's kind of like what I wanted to continue, I guess, yeah, no, it's awesome.
Scott Benner 2:45
And I've put you off a couple of times. You've tried to get on the schedule, and I was like, Oh, I can't do that, or it's been too soon, or anything. So I appreciate you being patient. Obviously. Give people just a couple of minutes. Like, where were you in your first episode The after dark was called, what was it called? Life struggles, okay? And where were you at that point? At that point, I
Max 3:09
had kind of gone over, you know, like, kind of the main point of trauma in my life, and we talked about that things were like, okay, at that point in life. Kind of gotten back on track with my diabetes. Things were going all right. And then into the second episode, things were going south again.
Scott Benner 3:30
How did they How did they go south? Is it so I,
Max 3:33
you know, wasn't taking care of myself again. I was in an abusive relationship. I was like, currently leading when we were recording that episode. But I mean leading the situation, which is really great. I, you know, started in a new field and work after that. I know a lot of stuff has happened since then. Really, I feel like that one was like our longest span without an episode.
Scott Benner 4:02
So episode 558, is called after dark life struggles. And then peach clobber is 812, so you haven't been on the podcast for like three years. This was you were on in 2021 then again towards the end of 2022 and now we're recording. It's spring 2025 Wow. Just tell people about your name change, and then we'll dive into where you are. Like, how did you What was that calling you in the first episode? What was that calling you in the second episode?
Max 4:30
So you're calling me Maddie in the first episode and then max in the second so the way that all happened was, I was a waitress at the time, and at that point in time, there's three of us, three Maddies on the floor, and it was getting really confusing, you know, differentiating between whose table was next, because there's three of us, and you'll get scheduled on a lot at the same time, right? So I was like, You know what? Like, I'm gonna change my name. On my card, so you can tell who's who. And so I chose Max, and I really liked that. So after a while, I started introducing myself as Max outside of work, and it just stuck. Yeah,
Scott Benner 5:14
psychologically. Do you think there was value from changing your name? Like, did it give you the permission to leave something behind, maybe, yeah,
Max 5:23
so we actually talked about that a little bit in the second episode. Or it was like, I kind of like shedded, you know, the old Natty, you know, I realized, you know, I was growing up into a different person, like, different values. I wanted to get my life on track. Like I was sick of, you know, just I wouldn't want to say doing the bare minimum, because I was still doing a lot, but I knew there was a lot I could improve.
Scott Benner 5:49
Okay? Do this for me. Describe Maddie in two sentences and include your diabetes.
Max 5:55
Okay, Maddie would make sure she got everything that needed to be done for her son, but not for herself.
Scott Benner 6:04
How old were you at that point? How old was your was your son?
Max 6:07
So I think I had turned I was around 24 Okay,
Scott Benner 6:12
yeah, and your son was how How old was he? When you were 24
Max 6:16
he was four, and he had health issues, right? Yeah, he had, he had cancer, right?
Scott Benner 6:23
And when you look back and you see Max, like, describe max, max
Max 6:28
brought light to what needed, what needed to be done, or so. And she started implementing those changes and working her eyes off
Scott Benner 6:39
what forces the transition. I mean, I know you were going through other things. And, I mean, you know, to say, a young, you know, young girl with a with a with a son, going through cancers. I mean, already a lot, but you had, you know, like you said, you had to move away from a situation. But, I mean, do you see it as, like, a pull yourself up moment where you're like, I'm looking at Maddie. This isn't going well. I need to do better. Like, is that it, is it that simple? Or Did something happen that, like, just made you go, Oh God, I have to, I have to change. I feel
Max 7:07
like there's always something that happens. Because, you know, life's always throwing me the hardest of punches. Okay? I feel like there's always, like, a big change, or like something major happens, and it really kicks me into gear. And also just kind of proves to myself, you know, like that I can get through these things, like I can do the things I want to accomplish. Like, the only one that's holding me back is usually myself. Who are
Scott Benner 7:34
you now? Like, present day, I'm still Max, yeah. Are you just a more refined version of that person you described, yeah, yeah. How have you refined it?
Max 7:43
Well, I mean, like, I said, like, I implemented those changes. I'm sticking with them now, more so than I was before. I feel like before I would get through the tough situation and kind of fall back a little bit, you know, like, now I'm keeping it more steady. So
Scott Benner 8:03
instead of the three steps forward, two steps back, you're lunging forward, holding ground, regrouping, doing it again. Yes, yeah. How is your son doing?
Max 8:12
He's doing great. He's doing a lot better. You know, beat cancer. It'll be three and a half years ago now, about Wow, but you know, like, we're having some struggles, you know, getting him back into school. He also was diagnosed with ADHD, so he's on medication now, and that's helped. He's in, they call it like a behavioral unit at school, just because he has, like, really big outbursts. You know, he can become kind of physical when he's escalated. That change in classroom environment, it's helped him a lot. Like, I don't have to be picking him up from school every day because something's happened and he enjoys it, like, he enjoys being at school now, you know, especially with the smaller classroom size, like, it's not very overwhelming for him. Yeah.
Scott Benner 9:00
How old is he now? He's seven. Wow, seven and a half. That's awesome. How were you as a child? Do you notice any of his behaviors being yours or no? Like,
Max 9:10
very few only because, like, when I look back to when I was a kid, like, I had undiagnosed ADHD, so there's, like, some things I can pick from there where I'm like, Oh, yeah. Like, he's kind of like that. But I feel like also me and him are growing up in much different environments, you know, like, I grew up in a very abusive household, you know, I was always walking on eggshells, like things really tough with him, you know, like, I'm very loving, I'm very patient with him, you know, like, he doesn't fear me. So I feel like there's, there's a lot of differences, a couple things, yeah, that are similar. You
Scott Benner 9:45
have a relationship. Are you with somebody? Or how is that going? I
Max 9:49
am actually engaged. Hey, look at
Scott Benner 9:54
you. How long have you been engaged?
Speaker 1 9:56
In? Like, three months
Scott Benner 9:58
now. Wow. I. How old is the relationship? It's about eight months. Oh, wow, that's quick. How old are you? How old are you today? I turned 28 two days ago. Oh, happy birthday. Thank you. That's awesome. Look at you. You're chugging along. Yeah. Do you have a date set? Or is it a little early for that? September
Max 10:15
19, 2026, or 2025,
Scott Benner 10:19
25 Wow, look at you. Awesome. Just found the right person. You could tell.
Max 10:23
Oh, yeah. How do you meet? We met at work. Actually, we worked for the same company, doing the same job.
Scott Benner 10:30
Oh, do you still do the same job? Today's episode is brought to you by Omnipod. It might sound crazy to say, but Summertime is right around the corner. That means more swimming, sports activities, vacations. And you know what's a great feeling, being able to stay connected to automated in some delivery while doing it all. Omnipod five is the only tube free automated insulin delivery system in the US, and because it's tube free and waterproof, it goes everywhere you do, in the pool, in the ocean or on the soccer field. Unlike traditional insulin pumps, you never have to disconnect from Omnipod five for daily activities, which means you never have to take a break from automated insulin delivery ready to go tube free. Request your free Omnipod five Starter Kit today at omnipod.com/juicebox, Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox type that link in your browser, or go to Juicebox podcast.com and click on the image of Omnipod right at the bottom, there's also a link right in the show notes of your podcast player. Diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. Us. Med has done that for us. When it's time for Arden supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden, this is your friendly reorder email from us. Med. You open up the email, it's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one. Us. Med has done that for us. An email arrives, we click on a link, and the next thing you know, your products are at the front door. That simple, us, med.com/juicebox, or call, 88872114, 887211514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put the stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide over 800 private insurers, and all you have to do to get started is call 888-721-1514. Or go to my link, usmed.com/juicebox, using that number or my link helps to support the production of the Juicebox Podcast. No,
Max 13:01
so I'm actually a electrician, though,
Scott Benner 13:05
no kidding, yeah. How did you get into that crazy
Max 13:09
story? I'm gonna guess. Yeah, so for a year, like, just every year, I was working at a sign shop, so I was like, making, like, commercial signs, you know. So I was doing that, and I really enjoyed it. And I was like, you know, I really like working with my hands. A lot of our machines were breaking down. And I'm like, a tinker. I like to know how things work, you know, I like to get my hands dirty. So a lot of the times I was fixing some of the machines. So I was like, you know, like, I want to look into schooling for this, like, this seems really fun. And so I brought it up to management to see if they would help me, like, pay for schooling. And I was like, I know we really need, like, an in house mechanic, a tech, like, someone like, it would be really beneficial for the company instead of having to hire like, like, outsourcing, because I knew that our closest outsource for a mechanic or a tech was out of state, yeah. So I was like, you'd like, this would be really beneficial. Like, I could still work on the shop floor in areas, you know, and just be like, there as mechanic as needed. And the CEO was like, You know what? Like, yeah, like, that actually seems like a great idea. Why don't you bring it up to our CFO? And he was new, he just got hired onto the company, like, a month or two before, and I brought it up to him, and he was like, All right, like, we'll, we'll have a meeting in a week with, like, the CEO, and, like, we'll go over it. I was like, okay, cool. So a week goes by. I'm like, hey, just checking in to see if you guys had time to sit down and talk with me. He was like, Oh no. Like, I'm sorry we haven't get back to me tomorrow. And I was like, Okay. And that went on for another week. And I was like, You know what? Like, I'm tired of, you know, you guys just like being around the bush, like, not, you know, talking to me, like, what's going on? Yeah. And finally, like, a CFO came up to me, and he was like, let the answers no but not no forever. He was like, we just like, we can't depend on you because of, like, your attendance, because at that time, my son was having a lot of trouble in school. We just can't really depend on you. So it's a no but not no forever. And he was like, I understand it's hard as a single mom. And I was like, No, you don't understand. Actually, you're married, you don't have a
Scott Benner 15:28
kid. From a business perspective, they had a point. Yeah, I
Max 15:33
feel like they, they, they kind of did, but like, my emotions were, like, kind of getting in the way a little bit. So that night, I was, you know what? Like, if they're not going to help me, that's fine, like, I'm going to sign myself up. So I did, and the next day, my CFO actually bring me in again to his office to talk to me about it. And like, he was like, giving me, like, this whole spiel about, you know, like work culture, like this and that. And at the end of it, he was just like, Yeah, but like, I said, like, it's a no for now, but a not no forever. And I was like, it may be a no for you guys right now, but it's a yes for me. Like, I signed myself up last night, and his face was just kind of like in shock, like, it kind of like dropped a little bit, like his jaw dropped. And I was like, yeah, like to write, like, I don't need you guys to help me, like, if I want to move up, like, I like, I care about my job, like I care about my career, my growth, like, I'm going to make sure it gets done. How long was the was the schooling? So I'm actually still in it. So it's about a year and a half long, so I've just got a couple more months.
Scott Benner 16:36
And then did you move jobs, or are you still there? The
Max 16:39
thing about that is that, you know, he was talking about my attendance. Right after that week, my team lead hadn't missed a week of work because of the it was either the flu or COVID. I think it was COVID. The following week, I got COVID, so I had a doctor's note and everything, but I had to miss a week of work, and they pulled me in again and they fired me for
Scott Benner 17:01
being sick. Yes, that's tough. They didn't fire the other person. No, they had had enough for you. You think
Max 17:08
I felt, yeah, I think, I think I was just it, because it was like, also, after that, like me and the CFO, kind of like we were in bumping heads, but it was kind of apparent he didn't like me. Well,
Scott Benner 17:19
I think also, once you make it clear that you'd like to do something else, and they say no, now they probably feel like there's animosity there. And, you know what? I mean, yeah, and maybe, and there probably was, you were, I mean, you
Max 17:31
know, yeah. So they actually got me. They fired me for attendance and insubordination. And I was like, how are you going to get me for insubordination? Right? Why?
Scott Benner 17:41
Like, what did they say? I mean, do you think you did what they said? I asked
Max 17:45
them to give me examples, and they're like, no. Like, it's already been done, and like, this and that and, like, I kept asking, but then there was, like, just a point where I was like, You know what, like, I know I'm not gonna get my job back. Why am I it's like, why am I wasting my breath? So I was like, you know, okay, like, that's fine. I'll sign your paper. I'll leave. And what's crazy is that the CFO did it alone. He didn't tell anyone else in management. He didn't tell my team lead. It was after, like, everyone left. I had stayed a little bit later, and so I was like, when everyone was gone, he pulled me in and fired me the next day, the CEO even reached out to me and was like, I'm so sorry. Like, I didn't know about this. Everyone was like, apologizing to me. And I was like, you know, like, it's not your guys' fault, you know. Like you guys are fine. Like, I don't have any bad blood with you guys. Obviously,
Scott Benner 18:38
they don't like me. So how long were you out of work?
Max 18:41
Only two weeks. Because so they had fired me in the middle of January, like, literally, January 15. I signed up for school on January 2. They fired me on the 15th. I put out some applications, and February 2, I started my job as an apprentice electrician and got licensed. That's
Scott Benner 19:02
awesome. How is managing your diabetes with being an electrician? Is it any different than working on the floor in the shop? No,
Max 19:09
I feel like it's been easier actually, just because I'm moving around a lot, and it kind of made me focus on, you know, like fixing my doses because I'm still on MDI, but I noticed that I was going low a lot because of all the physical activity, and so it helped me, like, harness that a bit better. You know, don't get me wrong, there were times where, like, you have fallen off the wagon for a short amount of time, but I've gotten back on. I never let it be like an extended period of time, like I did before. Yeah, Max.
Scott Benner 19:44
What does that look like? What is falling off the diabetes wagon? Look like? It's
Max 19:48
more like I'm not taking my fast acting insulin like I'm supposed to. It's either like, I'll be like, skipping it because I'm like. Stressed out of work or, like, stuff's going on and it's harder for me to take care of it, which actually kind of ties in something else. And in the middle of last year, I was actually diagnosed with bipolar,
Scott Benner 20:12
really, yeah. How did you get that diagnosis? You
Max 20:16
know, I'm a single mom. I actually became even more of a single mom, because, you know, like his, his dad was in the picture still before, you know, we just, you know, split time, but he ended up terminating his parental rights. Well,
Scott Benner 20:33
how do you do that? I'm looking into that. Now, you brought it up. I might, maybe I can, you know, I mean, get out some of these bills. Well, no, no, seriously, how did that? How did that happen? I don't understand. So, another
Max 20:45
crazy story. In the middle of everything, his dad had, like, moved away to Boise, Idaho for a little bit for work, and that's when we're still splitting time. But I was thinking about, like, Oliver's gonna stay with me. You know, he's already set up in school. He has all of his doctors here, like he's under my insurance, like it was just, it's just logical to keep him here. And he was like, okay, like, I'll pay child support, like, whatever. And, I mean, he never did. But anyways, he had moved to Boise, and I actually had ended up moving in with his parents, because me and his family still have, like, a really strong relationship. Yeah, and a couple months after that, I, you know, because he moved away, and it was just me and Oliver, I, you know, realized that I was like, I need to take care of my diabetes better. Like, I know I'm still struggling with an eating disorder. It was just me and him, like, I really need to be on top of this, because he only had he only has me, yeah, and so I actually contacted my insurance to see where I could go to inpatient treatment or diabetes. And the closest place was in Colorado. And luckily, I guess, at that time, his dad had moved back because things weren't working out with work, so he was going to be watching all over again half of the time, and then my family would step in for the time I was missing. So right as all of that was getting set up, you know, I was already out in Colorado, I'm about to, you know, like, get, like, checked in and everything. I get a call that Oliver's dad's brother, who was like my brother too. He was in the hospital because he had a massive stroke in his brain stem, and he was brain dead. My God. How old was he? Oliver? Or his brother, the
Scott Benner 22:38
brother that had the stroke, he's 21 Jesus. Was that natural or do is it brought on by something
Max 22:45
he had, I don't like, a really rare kidney disease, and so he would, like, swell up really bad. They we knew that it was going to take him at some point, okay, but we didn't think it was going to be associated,
Scott Benner 22:58
sure, sure. And then, but, and how does this lead to the, you know, your son's father being like, Yo, I don't, I don't need to be involved in this anymore. So I
Max 23:04
got that phone call, and I was like, I'm driving back right now. I feel everyone was like, you know, Jordan would want you to go back to the, you know, inpatient treatment, like, finish this. I was like, You're right. Like, I know he would. He would kick my ass if we were, if he were still here. So again, Dr drove back out to Colorado, and then I get a phone call from one of my brothers, and my brother says that while they're getting getting him ready to get in the bath, Oliver said that someone on his dad's side of the family, or like someone that he's near when he's with his dad, was touching him inappropriately in the bathtub. So I drove back again. Max,
Scott Benner 23:42
hold on a second. How do you not give up? You're 28 a lot more than a lot. That's an unfair statement a lot. Like, there's needs to be a bigger word for a lot, but so many things have happened to you. We haven't even gotten to the eating disorder thing and the outpatient thing because it's in the middle of the story. But like, I don't know. Like, how do you not hear that and go, I'm, I'm just gonna, I'm gonna go up to the top of one of these Colorado mountains and sit here for a while. Like, seriously, where do you get the energy for it?
Max 24:09
I honestly don't know. I feel like, you know, my son just really keeps me going. Like, I know I can't let him down, and I need to be the person for him that I didn't have when I was growing up. Yeah,
Scott Benner 24:22
you got a mom motor, that's for sure. Okay, I'm sorry. So your son at that point, how long
Max 24:27
ago was this? This was like, two years ago,
Scott Benner 24:31
two years ago. Your son's getting a bath, and he says, somebody touches me and then, and you're away at outpatient treatment for an eating disorder, yeah.
Max 24:41
So again, yeah. So I talked to other people at the facility, you know, it's like, I have a, really another family emergency, like, I'm sorry I can't, I can't stay right now. And they're like, We understand if you come back, just let us know. Like, we'll be happy to take you because. And but yeah, so I drove back, I had filed a report, and I was like, you know, like, I can't let him go with his dad, you know, like, obviously something's happening while he's over there, so I had to keep him from his dad, and I got a lawyer, and I is fighting for custody of him, because we had never put any of that in place, like, through the courts. And so I was filing for full, like, full custody. So, you know, like, legal everything. And you know, obviously his dad was upset, you know, his brother had just died, like, literally, like a day before, right? And it
Scott Benner 25:39
sounded like his family was supportive of you. They they like you live there and you feel like you had a you felt like you had a good relationship with them, I imagine,
Max 25:46
yeah, definitely. I mean, like, I still do right? I have a very strong feeling about who did it. The person's not, like, blood related, it would be his father's wife's, you
Scott Benner 26:01
don't have to say. But like, somebody, yeah, somebody, like, tangentially related to the family, yeah.
Max 26:06
But like, I mean, like, that relationship between me and his family is still there. Like, they still care for him very much. You know, they're still there for me.
Scott Benner 26:15
Can he see his son? Or can he not even see him? Or can he just not go with your with his dad. So,
Max 26:21
I mean, legally, he's a stranger to him. Now I don't let him see him okay.
Scott Benner 26:27
Do you think he knew it was happening? I don't know okay, because when
Max 26:34
it all happened, and you know, like his dad had finally heard about it, because I wasn't giving Oliver up to him. I'm sorry. I just lost my train of
Scott Benner 26:44
thought. Don't worry. I guess what I'm wondering is, let me take you a different idea. How do you substantiate that to like, a court system, like your son says something, we want to listen to him, but how do you prove it enough to take away, like, his dad's rights? I
Max 26:58
see, I see. So yeah, Oliver only said what happened and where it happened, but so because of that, yeah, like, we couldn't, like, actually, like, put that in place to use against, you know, like, him or whatever. But how do you even make
Scott Benner 27:12
sure it's true? Like, do you mean, like, I'm not saying don't believe the kid. I'm saying it's a big thing. Like, how do you prove it all out? So
Max 27:18
the child goes in for, like, an interview and an examination at the Children's Justice Center. So, I mean, Oliver went through all of that, and I guess, like, Oliver wouldn't say who did it, so we only had the like, the case was closed, but it'll always be able to be open, like any point in time, like, even when he's an adult, if he does decide to say or remembers that they're like, there's, it's like, on file that there was a case open,
Scott Benner 27:49
what he reveals at that Justice Center is enough for the courts to do what they did. No, no. So
Max 27:56
what had happened was Tyler ended up, like, agreeing to giving me, you know, full custody. But he was throwing a fit about how much child support he was going to have to pay. Okay? So he was like, I want the courts to go over, you know, like, do the calculations again. Because it's like the calculations went through ORs. And he's like, I want the courts to do the calculations on how much child support I'm supposed to be paying you, because you just want my money like this and that. And I was like, No, I've never asked you for money like you didn't even pay me child support when you moved to Idaho. So I was like, You know what? Like, if you're really bugging out about having to pay child support, you have the option to terminate your rights so you don't have to pay child support and but you need to understand what that's going to entail.
Scott Benner 28:44
You saw this as a way of, like, just cutting him away. Like, did you think he was going to take that when you told him, like, you could give up your rights? No, no, I didn't.
Max 28:53
Oh, and it was crazy, because I I told my lawyer that, because we're obviously talking through lawyers, two hours later, no less that we had got the response that Tyler agreed.
Scott Benner 29:04
Wow, no, I'm sorry. I'm sorry for everybody. That's sad, yeah, on a lot of different levels, but still, it's sad. Tell me a little bit more about how you figured out there was an eating disorder and going off to treatment for it, and did you ever make it back to treatment? So I mean,
Max 29:24
I knew, like, it was more, like I wasn't accepting it, but like I knew it was there, and I kind of, like, just hit it very well, because, like, I wasn't going, like, to the hospital for DKA or anything like, I'll run it just high enough that I was losing weight, or, like, fix it before I'd have to go to the hospital. But because of, you know, like, his dad being gone again, he like, I kicked to gear where I was, like, it's only me. I need to get help. I need to be there for my son. Like, I need to be healthy. Yeah, that's how it, like, came slight, like, I. Sought the help out myself, like I was gonna make sure everything was gonna be done, Oliver was gonna be cared for, but I actually didn't end up making it back to the facility, because once everything was happening with the courts, that's when, like, I was on top of everything. I'm not gonna let my son be without like, I'm not gonna put him through that. I'm not gonna put him through what I went through as a child, you know, losing my mother. Yeah, it really kicked the entire year. You
Scott Benner 30:26
feel like you pulled it together on your own. Is it a struggle, still, like a daily struggle? Does it rear its head sometimes to come and go? How does it, how does it live in your life now, I
Max 30:35
don't struggle with it anymore, and so I mean, like my blood sugar, my management, had stayed better. I was still having, like, the bad, you know, like self image and struggling with that, but my fiance actually has helped me a lot with that. You know, I'm, I tell them all the time, you know, like I've become more accepting my body, like I'm comfortable in my own body like I'm happy,
Scott Benner 31:02
yeah. How
Max 31:04
has he helped you with that? He makes me believe that he loves my body just the way it is, no matter what which. It was really hard to accept that, especially since, sorry, I'm taking off my boot right now. I just got out of the cast yesterday, so you might hear it in the background. No, it's fine, go ahead. But like, even when, you know, so actually got diagnosed with kidney disease as well a while back. So you know, there's times where if I eat a lot of sodium, like, I'll be really puffy in the morning, like, super swollen. And, like, I struggled with that before, where I was, like, I wouldn't want to go to work, like I wouldn't want to go outside, I didn't want anyone to see me, like I thought it was disgusting
Scott Benner 31:45
because you were retaining water and you were you were puffy, okay? And
Max 31:49
now, you know, like, he calls me his puffy pastry princess, and it makes me happy.
Scott Benner 31:56
Well, you know, it's interesting to hear somebody say, like, how, you know, I'm uncomfortable with my body, and I think people would immediately maybe jump to the idea that that's just like your size or something like that, but it's, it's got a lot more to do with a lot more than they might imagine. Yeah, it's a strange thing to hear you say that you you're uncomfortable with how you look, but only strange from the perspective of somebody who doesn't understand what like body dysmorphia might feel like. Yeah. I mean, a lot of the things that you're going through and that a lot of people go through, are quite elusive, as far as like, being able to explain them to the masses, to people who don't go through it. Because I probably said this in both of your episodes, I'm happy to say it again. You're adorable. It is heartbreaking to hear that you don't, like, look in a mirror and see that, yeah. I mean, like, I feel,
Max 32:47
I mean, like, now that I'm healthier, like, I am just, like, slightly bigger, you know, just as I'm not using my diabetes, you know, for weight loss. So I'm like, I'm a little bit bigger, but like, I know that I'm healthy. Yeah, I know that I'm healthy. I know that I'm loved. I know that it doesn't matter what I look like and I like. Really come to accept that.
Scott Benner 33:10
What in your past Do you think led to your body dysmorphia? My stepdad? Oh, for sure, yeah. And is that the way he spoke to you or interactions?
Max 33:23
Yeah. I mean, like he would tell me to, you know, like, eat less. You would tell me I was too fat to go to work. He would force me to work out a lot.
Scott Benner 33:34
That is a lot, obviously, and then get away from him. But that still sticks to you. That's not a thing you can shake, right?
Max 33:42
Yeah, yeah. It stuck with me for a really long time, but you don't feel the same way now. No, no, I don't. And you know, you know, just like, as an adult, and like, I know he was wrong for what he did. I know he was just wrong period, yeah? But, you know, like, I look back at that stuff and I'm, like, ill, like, I was just a child and, like, obviously, like, I believed you like, most everything he said, you know, like he was, quote, unquote, my parent figure, no, I hear you. I understand,
Scott Benner 34:15
I mean, I understand why it would get you like that. It just, it's, it's valuable for you to explain it so other people can hear and tell people, just for people, just real quickly. How old were you when you were diagnosed? Type one? I was seven. Seven. Okay, so at some point you figure out, if I hold back my insulin, keep my blood sugars higher, you know, my body is. It weighs less and, yeah, you manipulate that. How long do you think you did that for? Oh, geez,
Max 34:40
it was just over 10 years, like, when it's crazy is that, you know, like when I was much younger, like I went to rehab for my eating disorder. I, you know, have a lot of like, self help books on it. And actually, the average amount of time that it takes to fully recover for. An eating disorder is about 10 years. And
Scott Benner 35:03
that's 10 years of working at it and trying and yeah and failing and bounce like, like you said earlier, like three steps forward, couple back, start again, and then, but she didn't give up. It's pretty awesome. Thank you. Yeah, if I had to say to you, what's the first thing you think of when I say, What saved your life? Is it your son? Yes, yeah, right. Like, always being a mom, like
Max 35:27
so many points in my life, so many and now
Scott Benner 35:31
you've met a guy that you you seem to like, that's awesome. And how does he feel about the like, how do you feel? Well, let me get my timeline straight. First you met him, you said, not that long ago, about eight months ago, okay, when did you get your bipolar diagnosis? Just a
Max 35:46
couple months before that, before, like, 910, months ago, 10 months ago, I say,
Scott Benner 35:50
so that's something he knows about when he meets you, or at some point, okay, how do you introduce that to somebody, and how do they blend it into their like, you know what I mean? Like, how does that? Like, how did he hear that and then go, Okay, make sense of it. And said that this doesn't stop me from wanting to be in a relationship so
Max 36:08
with it. So, like, I have so many medical conditions, like diagnoses and stuff. What I love about him is that when I tell him about these things, he actually learns about it, or, like, asks me about it. You know, he wants to know, you know, and he doesn't like, there isn't that stigma when you like, first tell someone like, oh, like I'm bipolar, and they're like, oh, like you're crazy, like, I don't want to be around you where he genuinely cares,
Scott Benner 36:35
learns about it and tries to figure out how to help you with it, yeah. Well, that sounds like love and does he have anything going on? No, no. Medically for
Speaker 1 36:45
him, like he's pretty healthy, I'd say, like he's pretty
Scott Benner 36:49
good. He's like, I'm unencumbered. I can handle a couple of things. Yeah, it's really very lovely. What aspects of your health Do you find that sharing helps you with? And have there been anything that you just haven't told him about, like, stuff that, you know, I mean, you're like, No, this is for me, or are you just a completely open book? I have
Max 37:08
a completely open book. Like, he has a list of all my diagnoses and like medications that I take, and like, even helps me with, like, taking my medication, like, he'll remind me. And like, you know, like, we have, like the share app, or like the Dexcom, and he'll, like, look at my blood sugars and make sure I'm okay if I'm not paying attention.
Scott Benner 37:30
So when you're using insulin or or withholding insulin to manipulate weight, you have an actual moment where just life gets overwhelming and you forget to Bolus for a meal. Like, how do you know the difference between, like, slippery slope or the eating disorder, and what's like, just burnout, or is there no difference? Do they just go hand in hand? I feel like there's
Max 37:53
definitely a difference. So, like, with my eating disorders, like I was fully aware of what I was doing and like, I was, I was purposely doing it when I just, like, missed a dose. It's like, Oh shoot. Like, I missed a dose. I can see it in my blood sugar now, like, let's just take care of it. I did have like, a little bit of a burnout, you know, just a couple months ago. But like I said, like, Chris helps me a lot, and he kind of helped me, like, get back on track. And he's like, you know, like you need to be healthy for all of us, like we want you to be in our lives as long as possible. And he's definitely a big part of my support system.
Scott Benner 38:32
And on top of that, does he understand the slippery slope nature of that and the eating disorder? Yes, yes, he does. Like, he
Max 38:41
knows about all my history, and, you know, like, I said, like, I'm very open with him, yeah, because, like, I know when I'm doing things like that purposely, you know, like, all, like, I'll tell them, you know, like, hey, like, this was, like, this would happen in my past, you know, so, just so you're aware, like, if, like, you see any of these things if, if I notice these things, like, I'll tell him, or like, he'll tell me, like, hey, like, sniff us in the bud,
Scott Benner 39:08
and you're able to hear that and not get defensive,
Max 39:12
yeah, awesome. I really care about his input, and I take it to heart and I act on it. No,
Scott Benner 39:20
that's crazy. I mean, crazy because, like, I've been married for like, 30 years, and, you know, that's your goal, that's everybody's goal, but it's sometimes somebody says something to you and you're just like, whoa, what? Like, you know what? I mean, like, you have a defensive reaction to it, but, but you're not that's crazy. Crazy exciting for me. Actually, it's a thing. I was just like, oh, okay, what about the management of the bipolar? Like, I mean, that's a whole new thing to learn about. It must be difficult to find a good doctor. How do you like, how do you manage it? Does it flare? You know, what's it look like?
Max 39:51
That's crazy. Actually. Like, how I got the diagnosis? It was middle of last year. I was, you know, obviously, really burnt out. My diabetes with all of her, you know, because it was like, it like just me at that time now, because his dad was out of the picture, and I was getting super overwhelmed, like I was bawling my eyes out, like every day, like I was just really down and depressed, like I couldn't handle it anymore, like I was getting close to sending my son with my sister, one of my sisters, because she's a foster parent. Like, it got to that point where I was like, I can't handle it. I believe that Oliver would have been better off with someone else. My mom was like, here, like, here's this emergency, like, helpline, or like, something like that. Like, call them, see if they can help you in any way. And I was like, okay, so I did call that phone number, and, you know, talk to them on the phone for a while. And what was crazy is that while I was on the phone with them, and they were telling me that they were gonna fly me out to Florida for treatment for a month, the next day, there was a baby praying mantis that I saw in front of me, like, just appear. And I, like, looked up, feel like the meaning of like praying mantises, like, if they cross your path or whatever. And it was like something like hope and like good things happening and like success, like this and that. And I remember, like crying even more. I ended up switching it to, like, two days to be ship, shipped out to Florida so I could get like, like work taken care of, like, Oliver's care stuff like that, before I left. And so in Florida they that's where they diagnosed me with the bipolar, and they put me on medication. I've only switched medications once, and it seemed to be working really well for me. I've noticed a difference with my diabetes management while I've been on that medication, because so, I mean, like, I'm on Adderall, and it helps me take my medication, but I noticed that there would be, like, a couple months where it was a lot easier for me, and then a couple months where it was a lot harder, and then again, it was just like this, up and down, up and down. But it's like I was not taking care of myself for, like, a really long, extended period of time, okay, but so once I got on the medication, it helped with those lows and helped me stay more steady in my care. Awesome.
Scott Benner 42:20
That's great. So the medication, like, by helping you feel more what are we looking for to feel normal? Like, what's the word use? I would use,
Max 42:29
like, steady. Okay, because of the bipolar, you have those highs and you have those lows, the medication really helps me feel more steady. Okay,
Scott Benner 42:37
awesome. So when you have that, and you're able to think, and your ADHD is being managed, well, then you're able to focus on things. And do you see yourself as, like, oh, like, This is who I could be. You know what I mean? Does every Have you ever had a hindsight moment where you've looked back and thought, like, I wonder if, like, some of this would have helped me in the past?
Max 42:56
Oh, yes, a lot with both medications, for sure, really, again. Like, it makes looking back, it makes a lot of sense. For a long time, I thought it was just my period making me crazy, my body could be a lot healthier for sure. Like, maybe I wouldn't have the kidney disease or neuropathy, you know, I wouldn't have the chronic pancreatitis, the epi I feel like I could have been a much healthier individual.
Scott Benner 43:22
And so does that give you a lot of like, perspective? Does that make you excited for where you are? Does it make you sad for what you missed? Or maybe both? I don't know,
Max 43:29
I feel it's definitely a bit of both. You know, sometimes I don't refill my medications at the right time. So like, maybe I'll, like, go a day without one of my pills, you know, like, I might be, like, feeling like my nerve pain, for example, and I'm like, you know, like, if I took care of myself better when I was younger, like, I could have prevented this, but, like, I realized, like, it wasn't, like, entirely my fault.
Scott Benner 43:52
What do you do with those feelings? Like, how do you manage through them? I'll usually
Max 43:56
Dr Chris will be like, my body's so broken, and he's like, you're okay, like, I love you. It'll be fine. Like, we'll get on top of this. Don't worry. Find
Scott Benner 44:05
the hope is just the important part is that it is it just being hopeful that's valuable.
Max 44:09
I'm very hopeful. I'm a very hopeful person. I'd say you
Scott Benner 44:13
would have to be, I imagine is that the key in a moment when you're dealing with something that's from the past, that can't be changed, that's had an impact on today. But it's not the end of you like you can, you know, you can still manage like that. Hope is what is, what allows you to just gather up and go, Okay, this is the current situation. I'm just gonna, I'm gonna play with the cards I was dealt. Kind of a thing,
Max 44:34
actually. I always remember this picture. I was, like, scrolling on social media, like, a long time ago. And, you know, like, a few sentences on it, and it says, you know, like, you only got like, $1 to your name, like, just keep going. Like the car broke down. Like, just keep going. Like, it gives like, these lists of examples, you know, like things that happen. And at the end of every sentence says, just. Keep going. And that just stuck in my head, right? That's
Scott Benner 45:05
good advice. Advice, simple, obvious, sometimes, but not always, obvious enough to take and, and I think probably the secret of most people who persevere, you know, yeah,
Max 45:16
because, I mean, there's, there's nothing you can do to change the past, like, what's happened, has happened. You know, the only thing you can do is go into action in the present to change the future. Yeah,
Scott Benner 45:29
that's, that's an incredibly valuable thought. I hope you should say that twice so people heard it for sure. I
Max 45:35
think you actually second set in the second episode, yeah? Well,
Scott Benner 45:38
keep saying it, because the people need to hear it, but it's working for you. And I think it's great to show like, you know, a gap of a number of years between the thing you said, and, you know, you're still doing it, and it's still helping you through some pretty significant issues like yours is not like for the faint of heart. You know what? I mean, you're not on here talking about, like I went to school and somebody was mean to me, like you got big stuff going on, you know, and that you keep pushing through like this is awesome. Where do you see yourself in another 10 years?
Max 46:09
I see myself successful and happy with my family, and now just living life, not letting things bring me down in not letting myself add up more health issues on top of what I've got
Scott Benner 46:25
just do well and try to maintain better yourself where you can enjoy your life. Yeah,
Speaker 1 46:31
pretty simple.
Scott Benner 46:34
Well, you know what? It does seem pretty simple, and then you try to do it, and it's not always that simple. Yeah, right. Just keep going, yeah. But also having good people around you is valuable. More than valuable, it's, it's key, you know, yeah, yeah, because you've had times where you've been you and had people around you who aren't helping, and it's hard to get through that, and now you're just being you more, but with a person with you who's supportive and understanding and and you can see, you get a lot more poor motion that way. Do you ever think about getting an insulin pump?
Max 47:04
Yeah, so actually, I just got a new endocrinologist, and I was gonna speak to them with that about that
Scott Benner 47:11
you're up to thinking about it now, yeah. Where do you think the value will be for you by going to it? Obviously
Max 47:18
I could have tighter control on my blood sugar. The only thing that worries me is the tubing. Of course, it was like, just like in my field of work, you know, I'm having to climb, you know, like, around and go into tight spaces, and I'm in ceilings, you know, and there's a lot of things that, like, you know, brush against my body, or it's like, I don't want the tubing to get snagged. But then I know there's also the Omnipod. I know that, you know, like, I've had a couple sensors rip off, you know, like at work, because, you know, again, like climbing through stuff, having to crawl stuff, like that. So I'm worried, you know, like that, Omnipod could also, you'll be ripped off of me. Well,
Scott Benner 47:58
yeah, I mean, your options are Omnipod or like the Moby, the tandem Moby, like those seem like two smaller like options. And I think maybe, if you just, I mean, I've heard a lot of people talk about this that are in the trades, so I would think if you treated them, maybe the way football players treat them, one of those sports wraps, maybe they keep it a little tight to you while you're working, that might really help. I mean, listen, it's not, it wouldn't stop you from hitting a piece of duct work and maybe ripping it off, right? If you really, like, made a close turn and caught something. But I would think for the bumps like and, you know, nudges and stuff like that, that might be valuable. You know, it's an extra step. If you think the pump is going to help you, you know, any pump is going to help you, and that's what's holding you back. There might be some workarounds there. Yeah, you're right. I didn't think about that. Yeah, that's why I'm here. I'm just here to make a podcast. And then, you know, an hour into it, mentioned that you could do like a sport, pretty much my job. And to give you a place to tell your story and everybody else, can you tell people a little bit about I haven't had a lot of people on three times. Let me say something I know you'll take well, okay, you're not the most dynamic speaker. Like, you're not like, big and like, you don't get like, oh, like, you're not loud, you don't grab people's attention. You're not telling, like, super fun stories. Your stories are like, bummers. They're stories of, like, getting through tough things in life. But they're very valuable. People enjoy hearing them. I think they give people perspective. You have a ton more perspective than most people do, so you're lending it out to them, but I want to know, like, what makes you keep wanting to come back? Like, what is this doing for you? This process of talking to me,
Max 49:30
I like to tell people that I feel like I'm a lighthouse. And what I mean by that is that it's like I am a beacon of hope, you know, just because of what I have gone through, you know, like I can share my experiences with others. Be like, Hey, like you're not alone. You're not the only one. Like you, you can get through this like you, you will be okay. The lighthouse also means a lot to me, because my mother, she loved lighthouses. You know, we had a whole bunch of like, little statues. Shoes and my clocks and little trinkets, you know that were lighthouses. And you your your ship, it's out at sea, going through rough waters, and you just look for that beacon of light,
Scott Benner 50:12
yeah, who is your lighthouse? Who is my lighthouse? Oh, that's a good question, yeah, because I like that. You feel like you want to be that for other people, but like, who's doing that for you? And, I mean, your guy is an easy answer, but you haven't known him that long. So like, Who or what have you used over the years? Maybe you've had a number of different lighthouses, like, what have you used over the years that have that's done that for you? I
Max 50:36
don't know actually, like, I had never thought about that. You have
Scott Benner 50:42
a caregiver mentality, obviously. Like, I mean, you're a young mom whose kid had cancer and you got through that. You're wired to help people. And so it's interesting that when I asked you that question, what you said was, I help I want to do it to help people, which is awesome. I'm not saying otherwise, but who's helping you? Or what do you use that gives you that thing? Like, I'll give you mine outside of my family, which I think is, you know, probably pretty obvious, but I got a note the other day that said that the Facebook group is, you know, I don't want to, like, give somebody's thing away. This person's having mental health issues. They found the Facebook group, and it's helping them significantly, and they outlined for a while how it helped them. And I thought, Oh, that's awesome. Like, you know, like, so great that this is working for somebody. But then another person comes into the thread and says, I use this group in a very similar way, and then told their story in a post, you know, then another person comes and another and these statements get likes and hearts, and people come in and they go, this thing is so valuable for me. And I think that seeing other people helped helps me, and it allows me to keep doing the thing I'm doing. Because this could get meticulous, and it doesn't like the making of like, I've recorded five podcasts this week, and people could say like, oh, it's easy. You sit down and do it. Trust me, you go ahead and do it. You go ahead and, you know, interview and talk and and, you know, do all the technical things around this. You won't do it for two weeks. It's not easy. When it gets too businessy, like, you know what I mean? Like, it just feels like the thing I do every day, someone steps up and shares a story about the thing that I did and how it helped them, and it gives you enough energy for me, at least, it gives me enough energy to want to do it again so that someone else could do it. Because 11 years into this max, like most people would have quit, or they would have wanted to grow it into something else, or turn it into something else. And I just like what this thing does for people with diabetes. You know what I mean? Like, I don't, I'm not looking to make it different or bigger or, you know, I'm not looking to go on YouTube and see, like, Oh, this is what people think is good now, like, I should try to shift to that. Like, I don't want to shift to that. Like, if my thing never grows past where it is right now, it doesn't matter to me, because I know what it does for the people who find it. And so I would think that everyone listening who either takes the time to share back with me, or at least I see them out there, through downloads and in streams and stuff like that. Like, I know that some of them, maybe a lot of them, are getting something similar to what the people who share with me online are experiencing. And to me that, like, I draw the light out of that, but I'm wondering, like, where do you get it from
Max 53:24
now that I put more thought into it? Like, I don't want to sound like vain or anything, but I feel like it's almost for myself. Nothing wrong with that. Like, I I'll, like, tell people, or like, mostly Chris or like, I look back all my life and I see, like, all the things I've been through, all the things I've overcome, all the challenges and, you know, like that I've been able to get to just keep going. And it keeps me, like, in the mindset that, you know, like that I can conquer or accomplish whatever gets thrown, like thrown my way, yeah, and
Scott Benner 54:05
I'm very lucky that I am this way, because a lot of things I've been through, I'm sure, have taken people's lives. Actually, I gotta tell you, if nothing else came out of your three interviews. I'd be happy if nothing else, but what you just said came I think a lot more came out of it than that. But that was maybe the most insightful and thoughtful thing that anybody said to me in quite some time. You're your own lighthouse. And you said, I don't wanna sound vain, but I was like, What is she gonna say? But that doesn't sound vain at all. It doesn't sound like anything but confident and not confident, cocky or confident, like you're just like, look, what I've been through is a beacon. And if I can't find that beacon somewhere else, I'll just shine it out into the world and then draw it back for myself as well. I'll help other people if I can, but I'm gonna use it to help myself. Seriously, that was awesome. How did you come up with that? I. Been, is that a thing you've thought before? No, no.
Max 55:05
Like, I've never thought about, you know, like, who's my Lighthouse or where I get it from? So
Scott Benner 55:11
off the top of my head, that's it. We should stop. I should never make another episode of this podcast. It should be the last thing anybody has said on here, which is, go out there and put good stuff out into the world. And then, you know what? If somebody won't give it back to you, take some back for yourself. That's awesome. Not really. It's so simple too, but not because I have to write that down. We'll workshop it. We'll get it down to a T shirt slogan. But No, but seriously, that is really, maybe, like, one of the more compelling and thoughtful and uplifting statements anybody's made in a long time. That right there is why I don't care what people think is popular or what's popular in the moment, but a thing like Tiktok or a short on YouTube, I don't care if you know how the delivery systems change over time, nothing's going to replace long, thoughtful, sometimes rambling conversations with an interested interviewer, because that is not a thing you say out loud if we don't spend the last hour talking. And I might argue that, had we not spent three, you know, two hours talking prior to that too. So that was really wonderful, man, you just made me my whole weekend is going to be better now,
Max 56:27
thank you. Oh, I'm like, smiling right now. I'm all happy about it. Good, good. I
Scott Benner 56:32
want you smiling. You deserve it. Yeah, no, seriously, like, don't get don't get meek. Now, Max, you deserve it. You really do. I mean, everyone deserves it, but also it's turned you into a really thoughtful and still young adult. Like, I know that probably doesn't feel that way to you, but like you're young. You know, you don't feel young, I imagine. No, I don't. You're 28
Speaker 1 56:57
feel like I've lived five lifetimes. Oh
Scott Benner 56:59
yeah, yeah. But we need to get you into a place where you're bored. Oh
Max 57:03
no, I am so bored right now because of being in my cast, being home forever, yeah, it's been awful. I've been driving myself crazy. I've been crocheting a lot. Well,
Scott Benner 57:15
not that kind of bored. Well, maybe not that kind of boredom. When you bought a keyboard, I'm talking about like, I'm talking about the boredom that comes with with life, and comfort with knowing that the people around you are going to do the things, and that the support is going to be there, and that the money is going to be there, and that every day is not like, just you wondering, like, what trap you're gonna have to chew your leg out of next you know what? I mean? Yeah, I like a little bit of that, like, comfort for you. And it sounds like maybe this is going to happen. Being an electrician is a reasonably good paying job, is it not? It is? Yeah, what's the boy do he making some money? Yeah, he does the same thing. I do awesome. I love it. And do you have? How many kids do you have? Like, why do I not feel like I know that exactly,
Max 58:00
so it's crazy about it. So I have Oliver, but I actually just had a miscarriage a couple days ago. Oh,
Scott Benner 58:07
my God. Well, don't Jesus, how did you even come on here to do this? I don't know. Well, no,
Max 58:14
it's crazy, though I've been obviously thinking about it a lot. Yeah, so I know we talked about, you know, like my mother passing, and how she had died the day before my birthday. I found out I lost the baby the day before my birthday as well. Jesus.
Scott Benner 58:29
Were you trying to get pregnant? No, it was a
Max 58:33
surprise. I was telling Chris. I was like, and I told my sister as well. I was like, I feel like my mom is watching over me, and or at least I want to believe you know, that she's watching over me and that she just knew it wasn't the right time in my life for that to happen. Yeah, and she decided that she needed to take care of the baby for
Scott Benner 59:03
me. Well, that's a nice way to think about it, for sure. I'm sorry that that happened. You hear people say things happen for a reason all the time. I don't know if I, you know. I don't know how far into that I can, I can buy, but I don't think you need another new thing in your life. Like, honestly, like, I, I'd like to see you just settle in and just stay the course for a while, not saying that I'm happy for you know, your sadness, obviously, but I can see value in you not having another thing, yeah, you know. And no matter what it is, I wouldn't tell you shouldn't buy a kitten. Do what I'm saying. I don't want you doing anything. I want you. I want you like, just work on your relationship. Take care of yourself, you know, and and get into a nice rhythm, get through with your schooling and, and, you know, get out there and make yourself some money and be comfortable. Take care of all the things you got going on. It sounds like you're doing great, like you just need to stay the course.
Max 59:54
Yeah, yeah, definitely. I think I've really come to, like, a turning point in my life where, for. Most part is on the up.
Scott Benner 1:00:01
You're on the upswing. As far as I can say. This sadness aside, but I mean, listen, maybe nobody better to deal with something sad than you, like you should be able to traverse this. I'd be surprised if this was the thing that got you, you know, yeah, I'll finish up with this. Do you ever have a thought in your head, like, where you go? Like, has enough? Not like, is this it like, how can there be more? Have you ever thought, yeah, I would think that. I mean, honestly, a lot, yeah, it's not how it works. You don't just like, Oh, I got one thing. I don't get two things. I got three. You can't get four. Like, but like, at some point, have you ever stepped back and said, like, Where's all this coming from? Can you see where it's coming from? Or is it just randomness? Like,
Max 1:00:45
I was like, Hitler to pass life or something. You
Scott Benner 1:00:50
know what happened? SCOTT I um, I was a terrible person in a past life. I'm getting paid back. Yeah, everybody feels that way. I bet who has, like, type one or other autoimmune stuff, they're probably like, Oh, what did I do? Like, kick puppies in my last life or something. And does it just seem random? Like, have you ever, like, had a moment where, because, like, you've, you know, talked about a couple of signs in your life today and everything like that? Have you ever had that feeling of, like, this is where it's coming from? Or, I mean, would that be silly too? I feel
Max 1:01:17
like most, if not all, of the things, like, the major things that I've been through have been at random, like there was no reason, like or like it was unpreventable. And I'm just so lucky to, you know, experience all of them, but I don't feel like it really stems from anything purposeful. Yeah,
Scott Benner 1:01:37
it's actually not my question, but Arden and I were in the car last night together, and I don't know what we were talking about, but she said, and she had never really said this at any point to us in the past, but she goes, like, there's times when I've thought, like, Okay, well, like, that's gotta be it. You know, like, something comes up, and she's like, well, that has to be it. And it's interesting to see it from her perspective, because from our perspective, like she was younger, you know, growing up and being diagnosed with type one, and then, you know, thyroid and like, other stuffs come up since then, and you're always so busy as a parent, like trying to just ducks in an order figure out the best form of treatment, like the things that you can do, I don't think we take the time to see it from their perspective, like it's now it's another thing to be, another thing to do, another thing to forget, another thing to fail at, another thing to succeed with. It's a lot more than Oh, your thyroids mess that you just take this pill to the person taking the pill. It's a lot more than that. Yeah, that's what made me think to ask you, because it was the phrasing she used, like, a couple of times in my life. I thought, Oh, this must be it. And then she laughed. She goes. Now I realized, like, doesn't seem to matter. Like, as many things are going to happen as are going
Max 1:02:49
to happen. Life just keeps going, whether you like it or not.
Scott Benner 1:02:53
Life keeps life and right into you. Yeah, all right. Well, I mean, we're obviously calling this episode lighthouses and yeah. And I really appreciate you coming on and doing this with me again. Thank you. Yeah, of course, I love to come on every time you're awesome. Like, I'm gonna keep doing this just so I can track you. I want to see 10 years from now. You happy? Like, making that, yeah? Like, making the electrician money, and maybe somebody can finally explain to me why I can't get some of my lights working in the house. That'd be awesome. Yeah, I'll come. I'll come pay this. That would be awesome. All right, hold on one second for me. Thank you so much for doing this. Thank you.
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#1541 Paisley Park
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
A 5-year-old with T1D and her life-saving, tail-wagging hero—meet Tracker, Paisley's diabetes alert dog.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.
Shelby 0:15
I am Shelby Landreth. I am the mom to a five year old type one diabetes little girl named Paisley, and we are just riding this diabetes roller coaster one day at a time. If
Scott Benner 0:28
this is your first time listening to the Juicebox Podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox Podcast and follow or subscribe, we put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com. Up in the menu and look for bold beginnings, the diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin, nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. The episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and, of course, at touched by type one.org check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes, touched by type one.org Today's episode is sponsored by the tandem mobi system with control iq plus Technology, if you are 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. I'm having an on body vibe alert. This episode of The Juicebox Podcast is sponsored by ever since 365 the only one year where CGM, that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox
Shelby 2:20
I am Shelby Landreth. I am the mom to a five year old type one diabetes little girl named Paisley, and we are just riding this diabetes roller coaster one day at a time. Paisley, yes,
Scott Benner 2:33
oh, is that a there's no way that this is a prince reference, right?
Shelby 2:38
No, no. I fell in love with the name Paisley years and years ago, and whenever we were coming up with names for my daughter, my husband's middle name is Lee, and so it just kind of fit the whole family name type thing, Paisley.
Scott Benner 2:52
Oh, I like that. That's awesome. She was how old when she was diagnosed? She
Shelby 2:56
was three. Just turned three. It's just been a couple of years. Yeah, yeah, just a couple years in, it feels like it's been a lifetime. Though, any other kids? Yes, we have two other children. We have a one year old, her name is Everly, and then we have a 12 year old little boy whose name is Easton.
Scott Benner 3:15
Is this your second marriage? No, no, you just have a 12 year old and a five year old. Well,
Shelby 3:19
my 12 year old is my step son, okay? He is from a previous relationship of
Scott Benner 3:24
my husband. Got you that makes more sense, because I was like, yeah. I've said this to people before, but it nobody has a 12 as a 12 year old and is like, you know, five years later, like, you know, we should do,
Shelby 3:36
right, right? Well, he was, he was one of those children that was had at a very young age, yeah, so there was an obvious age gap there. Okay,
Scott Benner 3:43
you're a stepmom, damn. Or how long have you been with him his whole life? For how long since he was three? Wow. Okay, you probably don't think of yourself even as a stepmo. Then I would imagine most of the time
Shelby 3:55
it's all a team effort, right? It takes a village. I just
Scott Benner 3:58
heard Shelby say, sometimes it gets to the point where I go, Hey, I don't know if you remember or not, but yeah, why don't you get this one? Right?
Shelby 4:06
It's a juggling battle between all of us, especially at that age where they just start to get a little rebellious, that they start to really try to push their limits. It's just like, Who wants to take this
Scott Benner 4:19
one? Oh yeah. The male hormones are coming now you're gonna, oh yeah, this battle runs to like 20 Middle School. All of it, it's gonna be fun. Okay, so you have two little girls. Does your husband his family line, or you and your family line have other autoimmune issues? I
Shelby 4:35
have a grandmother who has an autoimmune disease. She has rheumatoid arthritis. But as far as diabetes go, there is no family history on either side. We have some non blood relatives on my mother's side that have a family line of type one, but they're not blood relatives.
Scott Benner 4:52
So your grandmother with the RA is the one who has something autoimmune, yeah. Okay, so then I get. You weren't looking for type one. So how did it present itself?
Shelby 5:02
It was the biggest whirlwind, not anything that we ever expected. Kind of hit itself. Honestly, I have a lot of medical background, and so I should have known the things to look for in hindsight. But you know that Mom Brain, medical brain, they don't work hand in hand. She had actually had an incident. We had just started gymnastics classes, and I was getting her ready for class, and she's like, I gotta go the bathroom. And I was like, Okay, we'll go to the bathroom. And she slipped and fell, and I didn't see her, you know, hit her head or anything like that. She kind of complained with her hip hurting and her arm. She ended up calming down like any three year old would. And we went off to class that day, and we came home, and about 10 o'clock that night, she started throwing up, and light sensitivity seemed like a concussion. So that was probably the first time I ever saw diabetes symptoms. But didn't know yet that it was diabetes. I took her to the ER and they're like, yeah, she's got a concussion. Here's a list of concussion symptoms to watch out for over the next few weeks. If you see these, don't really be alarmed. Scott, I don't know if you believe it or not, but 90% of those things on that list were type one diabetes signs and symptoms. So for two weeks, we were going, okay, she's got a concussion. That's why she's peeing out of pull ups left and right, and I'm having to change them two or three times in the middle of the night. That's why she's drinking so much. That's why she's confused enough to I remember vividly one day we were sitting on the couch, and she went to take a sip of her drink, and instead of putting it to her mouth, she literally just dumped it over her head. Oh my gosh. And I'm like, What are you doing? And she's like, I don't know. I don't know what I was doing. And I'm like, that's scary. Just
Scott Benner 6:41
super, super drawn to the idea of, like, I'm dehydrated, yeah, yeah.
Shelby 6:47
And I didn't really notice the whole losing weight or anything like that at the time, but like, two weeks later, she seemed like she was kind of starting to get over the whole concussion thing. And we had a family trip planned to Atlanta. We're big Braves fans, so we were going to watch a Braves game. We went out there for the day. She was like any other normal three year old. She was a little more tired, but I mean, what three year old that's thrown into an MLB ball game for the entire day is not going to take an extra nap? Okay? Totally fine. And then that night, we had gotten in really, really late. So of course, everybody's tired, and we got up the next morning to come home, and she didn't want to wake up. Okay? Like, I'm like, hey, you've got to get up. We've got to get dressed. And I'm setting her on the toilet, and she is falling asleep on the toilet, and she just starts saying things that don't really make any sense, like, just three words out of the air. And I'm like, What is going on? You know? This, this makes no sense. You're usually, like, the most verbal, well put together kid. And then I noticed she's super pale, and she just wanted to lay on the couch and basically not move. Like she looked like a sheet of paper that white. And I was just like, something's not right. So we thought, Well, maybe if we get some food in her, like, Let's go sit down, have some breakfast before we leave, maybe once we get her to eat and drink a little something, she'll perk up. Maybe she's just really worn out from the day before. And when I say, my kid loves to eat, Scott, this kid never missed a meal. Okay? This kid laid in the booth at the breakfast place that we went and did not move. She would not drink anything. She would not eat anything. She just laid there, and that's when I was like, I'm calling the pediatrician, because something's not right. And in my head, she had just fallen and gotten this concussion. So my mom brain starts saying, like, hey, what if? What if there was, like, some kind of, like, brain injury, or small brain bleed or something that got missed? This
Scott Benner 8:36
is what I'm wondering. Like, where did your mind go when she's out of it? She's babbling that kind of stuff. I thought she
Shelby 8:41
had some kind of, like, brain bleed or something that they missed, and it just took this long to, like, build up and cause a big problem. Interesting. You know, I call her pediatrician, and she's like, No, she definitely needs to go be seen as soon as possible. And I'm like, Well, we're five hours away from home. Like, do I take her here, or do I try to make it home? And they're like, you could try to make it home. And she she might be okay, but if you see any other symptoms, she needs to go the nearest er, we're like, okay, so we immediately load up to head home. And Scott, we didn't make it 10 minutes. We didn't make it 10 minutes down the road, and she started, it looked like the life was leaving her. She started throwing up in the backseat, couldn't hold her head up, and we took her straight to the ER and and I had smelled the ketones that morning when I took her to the bathroom, and I kept telling myself, my medical brain knows that smell, but I can't place it. I could not place it for anything. And we walked into the emergency room, and they saw her, and immediately took her straight to the back, like there was no sitting in the waiting room, no getting medical information, just straight to the back. And they asked, you know, had you been seeing? You know, more wet, you know more pain than usual. Have you been seeing, you know, headaches and all this? And I'm like, Well, yeah, she's had a contour. Contourion for two weeks. Of course, I've been seeing that that's all on my concussion list, and then they put her on a scale, and that's what really clicked for me. They put her on a scale, and they said she's 22 pounds.
Scott Benner 10:10
And how much? How much do you feel like she well, how much did she lose? She
Shelby 10:14
lost a 10th of her body weight. Yeah, for such a small
Scott Benner 10:17
person, that's a lot in two weeks.
Shelby 10:19
Yeah, two weeks before, when we were at the ER, they said she was 33 pounds, yeah,
Scott Benner 10:23
yeah. Jeez, that's crazy. Also, like, you know, kids gain weight, they just don't really lose weight at that age, yeah, normally,
Shelby 10:29
yeah. And not that fast. I said, your scales wrong. And they're like, No, it's not. And I'm like, No. Two weeks ago, she was 33 pounds, and they're like, oh no. And so I guess to them, they were already putting together the pieces, and they put us in a room. And I will never forget, within just a couple minutes, a doctor walks in, looks at my kid, who's just lifeless on the bed, and says, Can I smell your breath? And he leans down and smells her breath. And at that moment, I my medical brain finally kind of kicked in and overrode My Mom Brain. And I knew what he was doing. My heart just kind of sank, yeah, and because I knew at that point my all my pieces started to connect, I finally remembered that smell, and I knew what he was doing. And he looked he smelled her breath, and he looked at us, and he said, Your daughter is a type one diabetic, and she's in DKA like that. Yeah, he knew nothing of any of this. He didn't even hardly know what diabetes was at the time. And he looked at me and just gave me this puzzled look. And I looked at the doctor, and I said, Okay. I said, I'm not in denial. I said, I can accept that, because I know what she I it all clicks for me now, but I still want you to check her head make sure there's nothing going on, because that's that's what first came to my mind. And I know she had this concussion, which, in hindsight, was the fall. Probably all came from a low blood
Scott Benner 11:44
sugar. Did she just got woozy somehow and fell? Yeah,
Shelby 11:49
yeah. I think she may, you know, she may have had a blood sugar, low blood sugar, and stood up too fast and ended up falling. And nobody knew at the time. You know, we just thought she slipped on the floor.
Scott Benner 11:58
What's the time frame between? It's two weeks from the fall to the diagnosis, two weeks, yeah, two weeks prior to the fall. With hindsight, was there anything going on that you now see that? Oh, I do remember these other things. Or was the fall the first this episode of The Juicebox Podcast is sponsored by ever since 365 and just as the name says, it lasts for a full year, imagine for a second, a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off. That may seem too good to be true, but I'm not even done telling you about it, yet, the Eversense 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste a sensor or go through another warm up period. The app works with iOS and Android, even Apple Watch. You can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at ever since cgm.com/juicebox, one year, one CGM. This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pump and algorithm, the tandem mobi system with control iq plus technology features auto Bolus which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox, this is going to help you to get started with tandem, smallest pump yet that's powered by its best algorithm ever control iq plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead, and it adjusts insulin accordingly. You can wear the tandem Moby in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket head. Now to my link, tandem diabetes.com/juicebox, to check out your benefits and get started today. I
Shelby 14:25
mean, I remember the the typical, like, all the constant having to pee, but, I mean, at three years old, they they always have to pee all the time. It's hard to tell Yeah, you know, like it didn't, it seems super over, overly much, but in hindsight, I mean, it probably was, you know, I mean, think about it, the last time I had a three year old was, you know, like, six years before, yeah, right, right. And I was the last time I had a three year old around. So I just thought, Well, man, she's just three years old and has a tiny bladder. Kid pees
Scott Benner 14:54
a lot. I actually have a puppy here that seems to have a tiny butter.
Shelby 14:58
I mean, she's drinking, she. Eating. She's growing. She's fine. And she was a very active kid. So it's not like she was just laying around the house sluggish. I mean, she was out running around, playing, not eating, nothing. Yeah, so nothing really struck me odd, until, until it all started to kind of set in, and she ended up in DK, and that's when everything started to click, and they checked her blood sugar, and it was like over 650 and at the time her a 1c was 11.7 and we got admitted into a hospital five hours from home with our little bitty girl.
Scott Benner 15:32
Did you have the baby at that point? Or were you pregnant? No,
Shelby 15:36
I did not have her yet. That was actually like, that was in October. That was I could have been pregnant and didn't know it okay, because I found out that I was pregnant Thanksgiving Day. She was diagnosed, October 2, so I was either it was either right before I got pregnant, or I could have possibly been pregnant and not known it yet.
Scott Benner 15:55
So what was that like? Just that shortly removed from the diagnosis, finding out you were pregnant, terrifying, I would imagine,
Shelby 16:03
absolutely terrifying. Prior to diagnosis, we were, you know, all on board. We were like, hey, you know, I think we're ready to have another one. And, you know, be able to give her somebody to play with and grow up with and all that kind of stuff. We knew we wanted more kids. And then just the time frame. So actually, what also got thrown on top of it was, I was scheduled to have an unknown mass cut out of my back. Oh, my God, around the same time. Yes, jeez, it was, yeah, I they, we had found a mask back in July. Didn't really know what it was. They didn't think it was anything, but you never know. And we were going on this trip to Atlanta, and we're supposed to come back and like, within that next week, I was supposed to have surgery to have the mass removed and find out, you know, what we were dealing with. What did that end up being? It ended up being the day after we got out of the hospital, we literally left Atlanta, drove home, slept a few hours, and I had surgery the following
Scott Benner 16:57
morning, and when they removed it, what did they find? Um, they found
Shelby 17:01
out it was some really rare like fibroma or something. It was nothing to be worried about. It was not cancerous or anything like that. It was just some kind of super weird, something that a doctor had never seen. How big was it? I don't know. I mean, it was like I had a knot, probably the size of, like, a quarter, okay, right in my back. It was causing some pain, but So thankfully, it ended up being nothing. But you have to remember, like we got trapped in Atlanta. We live in North Alabama, so we got trapped in Atlanta for three days. We were there three or four days trying to learn everything. Diabetes got thrown into this whole diagnosis. Our kid was just in DKA. We thought we were going to lose her, and we're trying to take in all this information. Have this tiny human that now we have to give shots to, and we have to give the right amount and not mess it up. And we come home, and the next morning, you know, I'm I'm going to find out what my fate is, yeah, and I had to tell my husband. I was like, I'm not going like, I'm not leaving her for any amount of time. He's like, I've got her. She'll be okay. It's just a couple of hours. It's an outpatient thing. You'll be home. I remember they took me back for surgery, and they put me in this room, and I just like, that's I had been strong for so long while we were in the hospital, taking it all in. But that's when I broke by yourself, in that room by myself. It was quiet, and I just that's when I started to process and kind of like grieve the whole situation. And they were like, are you so upset about your surgery? Are you that nervous? Do you want us to give you something? And I'm like, no, like, it has nothing. Yeah, I'm not
Scott Benner 18:31
nervous about the surgery, but I would take the something. What is the something you have? Actually,
Shelby 18:35
I told them no, like, no. I was like, I don't want anything. Like, I need to feel this, and I need to grieve this, and I need to have my moment. Because if I don't have my moment now, while I'm alone, when I leave here, I don't need these feelings to hit me on top of everything else, yeah, like, because I I have this tiny human that I have to be strong for.
Scott Benner 18:55
Yeah, yeah. Were you asleep for the surgery, or was it like a local anesthetic and they cut it out? No, no, I was, I was put under, you were under, okay, see, I'm just trying to imagine, I put myself back in, in the time of Arden's diagnosis. If you would have, like, asked me if I wanted to move our sofa to a different wall, I would have been like, that is too much to think about right now. And, you know, like, just to get this, you know, the mass removed, and then probably about the time that you're like, Oh, this is healed, somebody's like, You're pregnant. Like, awesome, yeah. It's
Shelby 19:23
like, okay, so now I have a kid that I'm still trying to learn how to keep alive, and now I'm going to go through pregnancy and they, you know, heat of the summer, still learning how to live this life. And now we're going to bring another one in. Yeah, no, I bet you that felt like a lot crazy, well, and it got even crazier, Scott, well, before
Scott Benner 19:40
you tell me that it got crazier, how are you managing the diabetes at that point? Is it MDI? Do you have a CGM Is it a pump like, what are you doing
Shelby 19:46
there? MDI until Christmas. Okay, so she was diagnosed in October. We were MDI until just before Christmas, we got on the Omnipod five.
Scott Benner 19:57
Okay, all right, so pretty quickly do a nice algorithm. That helps you, and you've got a CGM, that's great. What do you mean? It gets crazier after that. Did the dog, like, start talking? What happened?
Shelby 20:07
So for almost, almost, you're pretty close.
Scott Benner 20:09
Listen, if I'm pretty close, actually,
Shelby 20:12
like, when you talk about CGM, I wouldn't I refuse to leave the hospital without a prescription for a CGM. Good. They didn't want to give me one because they're like, We don't want to stress you out and you to freak out need to freak out over high blood sugars. Like, that's going to be normal. And I'm like, No, I'm not leaving
Scott Benner 20:26
without one. Wait, how did you know that? How did you know to say that?
Shelby 20:29
Like I said, I have some some distant relatives that are not blood relatives, that are type one. And so she was my first call after I kind of had a minute to process and get her settled in the hospital. I was like, Hey, your son, you know, you have type one diabetes. Your son has type one diabetes. And he was diagnosed. Little like, what am I supposed to do? Like, I'm alone in this whole new world, and I don't know what to do. And she was like, first off, you need to calm down,
Scott Benner 20:54
Shelby. How come ladies are allowed to tell each other to calm down, but when I tell a lady to calm down, it all goes wrong. How's that possible?
Shelby 21:00
Well, because this was one of those people that knew what I was going through, and she did this whenever there, when her son was diagnosed, like there were no CGM, there were no pumps, like she did this the old school way. I'm
Scott Benner 21:14
just going to tell you that when I tell my wife to calm down, I know what's going on too, and it doesn't
Shelby 21:19
seem to matter. So yeah, she's like, you gotta calm down and, you know, it's going to be okay. Like this. This is not like, yes, this was really, really bad, and it's a blessing that it got caught when it did, but it's uphill from here. You know, there's a lot to learn, but you know, I'm here for you, we're going to get through it. And you know, she's like, You need to ask for a Dexcom, you know, before you leave, so that you can know what her blood sugars are, because she's so little and can't really tell you, you know, how she feels and what's going on. And they were like, well, you're not going to find a pharmacy that has one. I said, Well, I got a five hour ride home. I'll find one between here and there. I'll find one somewhere. Yeah, and I did, and I did. I found one before I made it home. What were
Scott Benner 22:01
you calling ahead? As you were driving, I was calling ahead,
Shelby 22:04
and I thankfully one one in our hometown already had one. And so like I was already getting all the prescriptions sent to the pharmacy, everything ready, so that as soon as we got into town, we could pick everything up, nice, which was also a reality check whenever I leave a three day hospital stay, and then come home to pick up my newly diagnosed daughter's prescriptions, and they tell me it's over $1,000 to keep my kid alive.
Scott Benner 22:28
Listen, if you bought food at a at a Braves game, you you must have some money.
Shelby 22:33
So, yeah, it was definitely a like, whoa, hold on, what's going
Scott Benner 22:37
on? I mean, listen, I made fun, but it's a pretty goddamn big shock when you start seeing the bills, and you know what I mean, it's like, Whoa. What's happening? How come? And I love the first the first January you're out of pocket resets, and you're paying, like, cash for everything, and it's all in the first month. And then people are like, Oh, how long does it take you to meet your deductible? I'm like, like, a week and a half. Like, how long does it take to take you?
Shelby 22:59
That's the first question you ask if you ever have to change insurances, what's that deductible? Because that's what I'm gonna hit that what's
Scott Benner 23:06
my out of pocket? Because basically that's how much money I need in January. That's how I always think about it. Because, you know, you order, you order pumps, or CGM or so other supplies, and it's all just like, you're like, okay, here. And then, it's terrible. Go ahead, I'm sorry, but
Shelby 23:23
yeah, so you asked how it got crazier? Yeah, so we got through diagnosis. We got through that Christmas and coming up on summer, you know, we had heard about diabetic alert dogs. PAISLEY had been watching it. You know, what do we do whenever we have this new diagnosis in today's world where social media is so accessible, you go there to learn, you're like, hey, I don't know what to do, so let me go to social media and see what all these other people are doing. Or how do I fix this, that and the other and Juicebox was amazing for us back then, that literally got us through so much. But Tiktok became a big thing for us too, and Paisley started finding this community very quickly, and diagnosis of other kids on Tiktok because she just didn't have kids here. So it started off with her like, Hey, I see them giving their own injections, and I see them putting on pump sites. And it became an outlet for her to make videos and post them so that other people could see her doing it. Yeah, but it became a bargaining tool of like, Hey, I will put on this device if you'll record it and put it on Tiktok for me, okay? And literally, two weeks after diagnosis, she was three years old, giving her own insulin injections because she was like, I can do this. I see all these other people I can do this. So Tiktok kind of became a thing that we were going to to learn. And she found about about service dogs. And she's like, Mom, I really want a service dog. And I'm like, I know you would love, I would love for you to have a service dog, because blood sugars of 30 while you're upstairs, bouncing around and have no idea, you know. And if Dexcom is wrong, those are scary. It'd be nice to have a dog around to let me know. That kind of thing you. But I mean the cost, they're just so expensive. And where do you even start? You know, I think that's everybody's thing. It's just, where do you even start that journey? And my husband, we run a plumbing company, I
Scott Benner 25:10
want to agree with you. You've taken a big risk, because, you know, there's companies that probably do a great job, there's companies that probably do a terrible job with, you know, training service dogs. There's probably companies that aren't certified that are out there trying to take people's money. I've seen wildly different versions of the cost of these animals, yep, you know. And I've had people on that have trained their own dog, and I'm like, Well, you know, so you took the dog you had in your house and trained them. And I'm sure every dog is not right for it, and the training is not easy, but it's a weird thing to think, like somebody might ask you for $15,000 for something that, like another person was like, oh, yeah, I did that myself. Like, it's, it's a very wide, I guess, list of possibilities. And how do you know where to jump in? And, I mean, what if you don't have that money? And and you decide, like, this is a thing we really, really need. So anyway, I'm sorry you were starting to say you have a plumbing company.
Shelby 26:04
Yeah. So this is, that's exactly kind of where I was at. Was like, I mean, this would be amazing for you and for our family, and, you know, I definitely think it's something worth setting up, maybe a five year plan for, because obviously that cost is just not something that anybody can just really say, Here you go, and there's a lot of research, and a lot of people have wait lists, and, like you said, trying to find the right company that's going to get you exactly what you want for your money. And, you know, finding a company that's going to give you a dog that's going to work. I mean, there's a lot of stories out there of, you know, service dog dropouts. You know, they didn't make it
Scott Benner 26:39
really like you like you bought a service dog, and your blood sugar gets on it looks at you and goes, I'm not involved in this. God.
Shelby 26:45
I actually have a very good friend of mine who started her service dog journey, ended up with a dog who was a washout. He he did not perform up to par, and she ended up doing the journey all over again. And now she has, she did it with another company, and now has an amazing service dog, but she
Scott Benner 27:03
doesn't have that money from the first time. Yeah,
Shelby 27:07
no, does not have that money. Still has the pet. He is now like a house pet, and he loves his life as a house pet, but, yeah, I mean, it happens.
Scott Benner 27:17
I guess got to be frustrated. I listen. I love my dog, but if you told me my dog was absolutely 100% going to percent gonna do a thing and then I got it, I'd look at it every day and go, like, yeah, he don't do that thing. They said it was gonna be hard to swallow. I'm walking around here with a $300 dog that I paid $15,000 for.
Shelby 27:35
Yeah, yeah. I still, I mean, she has some incredible stories to tell, but so that was kind of my thing. Was like, let's put it on a five year plan. Okay, you know what happens when you do things like that? Scott,
Scott Benner 27:46
I mean, listen, I'm very segmented person. If I had a five year plan, it would take me five years to do it. But what happened to you? I'm guessing that you use that energy of I'll find the CGM on the way home and move things up a little
Shelby 27:58
bit. It It wasn't me, it wasn't me. It was a it was it was one of these things that was known to be very needed and very helpful for us. And I, when I say this, I mean it's so quite literally, that doors just started opening for us. It was like, Hey, here's your thing for today. Here's the door open, walk through it and see what happens next. And it was just like, God just started opening one door after the next. And the process set up
Scott Benner 28:29
so fast. Opportunities started popping up, things that you were like, if I do this, it'll get us there quicker.
Shelby 28:34
Well, so my why was going to say we own a plumbing company, and my husband, ironically, just went out on a job to fix somebody's kitchen sink. And they were so thankful to have him come out and fix that sink. And she tells me, to this day, and he got out there and got to talking to him, and they had a truck in the driveway that said dog training elite. And they were telling him, you know, yeah, we train dogs, this, that and the other. And he's like, Oh, that's cool. And then they mentioned that they had a service dog themselves. And he's like, Oh, that's awesome. You know, my daughter's a type one diabetic, and we've really thought about getting a service dog. And they're like, well, guess what? You're in luck. We train service dog. He's like, you do? Can you train like a diabetic alert dog? And they're like, yeah, absolutely. And there became our new best friends. So they're like, yeah, let's get you the number to our you know, if you you can bring your own dog, if you have one. And we're like, yeah, the dog we have is not, nowhere near equipped.
Scott Benner 29:22
Not happening. The one we have doesn't seem interested. But thank you.
Shelby 29:26
Not even no he was. He was a mess, to say the least, the
Scott Benner 29:32
pet you had previously, yeah,
Shelby 29:33
he was, he was one of those that would probably run out the door and you were worried what was going to happen next. You know, he would never like physically hurt someone, but he would definitely make them think so. So public access would have been no option.
Scott Benner 29:46
I don't know if my blood sugar is low or if this dog wants to rip my arm off. I can't seem to tell Right, right. Okay, so not a good option. That dog
Shelby 29:53
not a good option. So they're like, we can put you in touch with a breeder that we know that we've used several times and so. I called her, and she's like, Yeah, but we just had a litter not too long ago, and we're gonna skip this litter that we would normally have. So it'll probably be, like, a year, year and a half before we have another litter. And I'm like, Okay, well, you know, that's not terrible. You know, that gives us some time to, like, figure out financially, what we're going to do, fundraising, that kind of thing. And you know, you still got some time after you get the actual puppy, before things start really ramping up. And so I'm like, All right, well, let's, let's plan on that. Well, I get a call in about six weeks. Hey, so remember that litter we weren't going to have? Well, she accidentally got pregnant, so now we're going to have a litter now, and we're not going to have the litter in a year. We're going to have to skip so either you get your puppy now or it's going to be, like, a lot longer before you get a puppy. And so we were faced with this, like, do we go ahead at the time I'm six months pregnant, we're talking about bringing home a puppy while I have a type one, and I will have a, like, one
Scott Benner 31:03
two month old, yeah? No, puppies are a lot of work too, yeah?
Shelby 31:07
Well, not just a puppy, but a service dog, Puppy, okay, we went a very with us, having a local trainer. It's a very non traditional route, because this was not going to be send the puppy off to be trained, and it magically comes back working. This was going to be, you know, they come in. It was a lot cheaper, but they would be coming in, like once a week, working with us, seeing the progress, kind of telling us what steps next. And then I'm doing all of the training work outside of that, during the week with the puppy. So essentially, I'm doing 80% of the work on top of my newborn and my type one. I thought when
Scott Benner 31:40
you said, they said, the dog got pregnant by mistake, you were going to say, Yeah, me too, but yeah.
Shelby 31:48
So I was like, I don't know about this. I was like, and not to mention, we haven't even started fundraising. Like, where are we going to come up with this cost?
Scott Benner 31:54
How much was the what was the number? It was about 15,000 Wow. I was guessing I was on. Yeah, you
Shelby 32:01
were spot on. Now, I mean, a lot of the dogs that kind of come back already trained for a thing. I mean, you're looking at a little bit more, but with us doing a lot of the work with them, we loved that. Because, for one the dog trip to the dog tracker is his name, he was bonding with Paisley from the day he came home, and like they were working that bond and that teamwork from day one. And I love that aspect, because it's just hard for me to comprehend, like getting a dog that's, you know, one two years old, and then bringing it into your household with this immense job and responsibility, without having that long term bond. I
Scott Benner 32:36
want to ask a question. So like, Yeah, I've been Where you've been like, I've been, like, with a newly diagnosed young person. I know how scary it is, like, I'm with you all the way. Yeah, if you would have told me that I had to pay $15,000 for anything, I wouldn't have been able to come up with it, and I would have balked at the number, especially if you are not a person who's like, oh, sure, I'll just take that out of the $15,000 box I have over here. Like, so if you don't have that box of money, what is it that drives you to believe that that, like, I mean, that's got to be $15,000 I would imagine, is a pretty large percentage of your yearly income. So like, What makes you think like, this has to happen? Is it fear? Are you just afraid the fact so many
Shelby 33:16
doors had already opened for us was just like, we're gonna we're gonna make this happen like this, many doors has opened. It's obviously part of, you know, God's plan for us to to get started on this. So let's just see where it goes. The trainers kind of knew that the timeline had gotten sped up, and they're like, Hey, we can work with you payment wise, like, versus paying everything in full. You know, as we go through training, we can work with you on the payment scale, and that made us feel a little more comfortable. But we just hit the ground running fundraising. I mean, I was calling businesses trying to get businesses to sponsor. What's
Scott Benner 33:49
the onus for them? Like, when you call a business up and you're like, hey, my kid wants a dog that can tell her when she's getting her blood sugar low, why don't you throw $500 into that? For me, what did they get out of that? So
Shelby 34:01
a lot of businesses, depending on, you know, kind of how their businesses are set up and whatnot, they can get us a tax write off for charity donations like that. We actually also partnered with a non profit that's local to us, okay? That does some fundraising and stuff for diabetic alert dogs too. So essentially, when businesses wanted to donate even small, small or large sums, if they they kind of did it through them, then they were, they were given a piece of paper that said, Here's your tax write off for the year, where you can claim this as a tax deduction. You know, charity. So then they're not
Scott Benner 34:34
donating it. Actually the money to you. They're donating to the charity. The charity is buying you the dog.
Shelby 34:39
They were handing the money to the trainer. Yeah, right. They were giving the money over to them. But we started making t shirt. I learned. I ordered, I made my own t shirt design, and then ordered the prints online and bought, like, $100 heat press on Amazon. And we started selling T shirts, really. And I sold, I don't know how many T shirts I made during that time. And I didn't think it would really go anywhere, but it did. I mean, the word just kind of got passed around, and it just little by little, things started to add up. We had someone locally that had reached out to me who got a lot of, like, football memorabilia stuff that they they were part of, like, a big Facebook page that auctions that kind of stuff off, and they gave me a ton of items, and we're like, here you can do whatever you want with them. Just use the money to help pay for her
Scott Benner 35:26
dog. Oh, wow. Turned into a community effort, really. So
Shelby 35:30
this is where it turns into community. I knew of someone who was also in my state on tick tock. Their name was rags Party of Five. They I had messaged him and was like, Hey, y'all do a lot of Alabama stuff. Is there any way maybe you could help me kind of auction this stuff off? And let me tell you, those are two of the most amazing human beings I have ever met. He's like, I'm going to do one better. I'm going to help you auction this stuff off. But like, we want to do more. So they started setting up all kinds of things, and they helped. They used their platform on Tiktok and raised, like, over, I don't even know how much money it was off the top of my head anymore, but it was like, over $5,000 Wow, that. Then it was just people on Tiktok that would see their little fundraisers, like Super Bowl boards and stuff, and they're like, hey, you know, I'll buy a spot on the board, or I don't want a spot on the board, I just want to help. Here's a donation. And all these people we didn't even know all over Tiktok just started to donate to our cause. And next thing we know, you know, we started fundraising in October, and by February, this dog was fully funded. It
Scott Benner 36:36
was paid for. Let me ask you a difficult question to answer. Maybe now you've had the dog for how long
Shelby 36:41
we have had him, a year and a half,
Scott Benner 36:45
okay, and you've had a CGM the entire time, yes, did you need the dog? Yes? Why? What happens? Tracker
Shelby 36:52
has made so many life saving alerts. I can't even begin to tell you one of the MO The biggest ones was a few, a few months ago, we were out at a baton class, and her blood sugar looked like it was trending up and kind of right on that borderline up high and right where her pump would be giving automated insulin. And I and he came to alert me, and I asked him, so not all service dogs are trained, so let me be very clear, Tracker is kind of from what I can have learned, one of the few most dogs are just trained to give you an alert, like they call it. You say, hey, there's a problem with blood sugar, and then it's kind of on you to check and see if they're telling you, you know, what way it might be trending. But we actually train tracker to tell us, not only that, there's a problem, but whether her blood sugar is going high or if it's going low. Okay? He can actually differentiate the two. And so while her CGM was saying she was going high, which is normal for that activity, he came to me and said, No, her blood sugar is low, but the like the activity and the CGM, they kind of match up to normal. I'll check on her. So she finished up. A few minutes later, I checked on her. Well, her pump was dumping insulin into her because they thought that she was high, and her blood sugar was actually, you know, in the 6070, range, okay, and had it not been for him, I wouldn't have thought anything of it, because that was normal for our
Scott Benner 38:14
situation. What was the when you said, Hi, what do you mean high?
Shelby 38:17
His range is to alert anywhere from anywhere below 80, and anything above 180 she was kind of on that, like 190 range on the CGM,
Scott Benner 38:25
yeah, I wasn't asking about that. Where the dog alert I was? I was talking about what do you think of as a high blood sugar? Because you just said high. So you so her blood sugar was around on the CGM, like 190 or so. Yeah,
Shelby 38:35
190 200 the alert would be given that insulin, yeah,
Scott Benner 38:39
he alerts low, and then you check a blood sugar, and what do you get, like a 60 or something like that? Yeah,
Shelby 38:44
I got like a low 7060, blood sugar, and she had like over a unit on board at the time. How
Scott Benner 38:51
did she feel? Did she is that a thing like, do you think she would have told you she felt low?
Shelby 38:55
Hey, so that's a big thing that we love about having tracker, is she does not feel her highs and lows. Okay? She has to be very high for a very long time, and she will notice that she goes to the bathroom frequently. But she doesn't feel like all the effects that some other people, I've heard feel from a high and from a low. She won't feel a low until it's like low 50s,
Scott Benner 39:18
okay? Then she's dizzy. Yeah, she'll
Shelby 39:20
say she's dizzy or she just doesn't feel good. But for her, not being able to feel that and track her beats technology by 3045, minutes. He's ahead of the curve. Way ahead. Yeah, that's pretty awesome. Way ahead. So, like, he will come to me, like, this morning he came to me and said, Hey, her blood sugar is going low, and I looked at her CGM, and it said 112 with, like, the diagonal arrow down. And I was like. I was like, yeah, we'll watch it, because that's what we tell him. If it's not at that threshold that he alerts to, we'll say, Hey, we're going to watch it, and we'll kind of set a timer and come back in and check in with him, because we want to make sure it hits that. Threshold. So we're not, like, rewarding does the dog have a snooze button? He does not. He will come back and tell you again. Oh, because
Scott Benner 40:06
what do you mean? Like, I tell him we're gonna watch it. Yeah. So if he alerts
Shelby 40:09
and, like, her blood sugar, if we finger stick her and it hasn't hit the threshold of 80 on the low end, then we don't want to reward him for, like, a blood sugar that's higher than his threshold. So we'll say, Hey, this is an early alert. You're letting me know early because you smell it coming. We're going to wait till it hits that number before we reward it, because otherwise, in a dog's mind, hey, I got that treat early, and I really was kind of smelling this smell too. So let me start alerting earlier and earlier, and it becomes less about the number and on the treats and more about the treat and the reinforcement as early as you can get it. So we really try to wait till he hits that threshold. We'll say, hey, we'll watch it. And then if it gets to that threshold before 15 minutes, he's already back at you, saying, hey, check again. Like 10 minutes can go by and he hit that threshold, and he's like, Hey, letting you know you should recheck now. Or if he gets really aggravated because he's like, Hey, I'm being persistent, he will bring you the bag with the glucometer and basically throw it at you and say, Hey, check it now, listen,
Scott Benner 41:12
I really want this treat, and I think I'm right about this, so let's get going. Yeah, and he's
Shelby 41:16
not wrong. Yeah, he's not wrong. That's awesome. He is a huge asset. And while it was so much work, and still is work, that's what I tell anybody that says, like, Hey, I've thought about a service dog. I say you need to be ready for the work, because it doesn't stop just because they're trained and they come home and they just work, yeah? Like, it is an everyday task, constant training, really forever. You know, you're always working on different skills. Tracker can actually take juice boxes to Paisley. So if she gets low and if, like, they, you know, if she was older and she I wasn't around, and she's out on her own, he could go get the juice box and bring it
Scott Benner 41:50
to her. Tell me, is she in school yet she is kindergarten
Shelby 41:53
age, and she should be in kindergarten, but we home this year. Specifically, our choice was based off of, you know, sickness. PAISLEY is not a type one that handles sickness very well, so we wanted to keep her home for that, and we wanted to give her and track her more time to work together all the time. So fun fact you don't know about me is, prior to Paisley's diagnosis, I actually ran my own online education business where I homeschool children kindergarten through second grade, all over the world, over, like, online, yeah, online. I taught kids all over the world, yeah.
Scott Benner 42:29
So I, that's what I was wondering, like, because at some point, that's the next step in this question for me, which is, like, I mean, what's the trade off? Is she going to be in school with a service dog sitting next to her. Yeah? Yeah.
Shelby 42:42
That's, that's the goal. But the key is, she has to be old enough to be fully responsible as a handler for him. And you have to think, I mean, you're only five, six years old, it's gonna be a while. It's gonna take a little while,
Scott Benner 42:56
yeah? So, like, I'm playing devil's advocate here. But like, is there a worry that, you know that's going to make her so different that it's it's going to draw attention she doesn't want, actually,
Shelby 43:06
she she's very attached to tracker. I could see where some kids, maybe that's how they feel. But for her, he's her security blanket, like he knows if she starts feeling bad, he's there. He's she knows that he's always going to tell her. So this is kind of where it brings in some independence. I know I put that in my little list of things to talk about. Is since we've had tracker, and since we have, like, switched insulin pump systems, and Paisley has been at home with me homeschooling. Our big homeschool thing was more of just like we can do the work, but when she goes to school, I not only want her, it's not about just taking the dog, because lots of kids have service dogs that go to school and they don't take their dog. So it's not just about the dog being there to watch and help. But I may be in different spot, but I don't trust a school 100% to be able to do the job that I do. That takes 24 hours a day, seven days a week. Yeah, when they have 600 kids, and that might just be me being a mom with anxiety, but Well, I
Scott Benner 44:08
don't disagree with you that you're going to do a better job than somebody else is going to. I just wonder, like, at what point in life will it be unreasonable to do this, and do you set her up? Listen, I don't know if this is right or not. I'm just talking right. But like, do you see you set her up to feel like, without this animal, I'm screwed. Most people who have type one diabetes don't have a service dog. I'll have one. Yeah, yeah, so and they're fine. So that's like, you know what I mean? I
Shelby 44:34
love that question, Scott. I love it. I do. So actually, with her being at home this year, our goal was just to work on them, but also to make her more comfortable with her diabetes. I noticed when she got diagnosed, she got she became very clean, like, I can't leave my mom because I'm diabetic. What if something happened? Like she wouldn't even go to a neighbor's house to go play with a friend unless I went with her. Where did she get that idea from? She. Always been a clingy child, even before diabetes, and I think it just made it worse, knowing, like, hey, bad things can happen just because, like, she knows, hey, you have to treat this low blood sugar or, Hey, you know, I don't know it was just one of the things that she had, but now that she's been home this year, I have seen the biggest spark I think I've ever seen. This child generally loves to learn about diabetes.
Scott Benner 45:24
So you feel like she's got a comfort level from the dog that's helping her embrace things, yeah, so
Shelby 45:30
having the dog around, you know, to kind of let her know things, I think that has been huge. But I think being at home and being able to be involved in her diabetes care, you know, and I think I know this is a huge kind of seesaw, okay, well,
Scott Benner 45:44
no, she's getting older, it makes sense.
Shelby 45:47
But she's getting older, but she's high, she's five, yeah, you know, like your eight, nine year old, you know, you're kind of used to the Hey, you might take on a little responsibility, but at five years old, that's a lot to ask. I mean, you're still learning how to write your name and count? Well,
Scott Benner 46:01
let me say this. I mean, I saw that with Arden, so I think maybe it's the diabetes. It Fast forward to a little bit, because Arden was two when she was diagnosed, like, just two, and by the time she was five, you know, you would have thought she was 10, by the way, she was handling things. Think that might be common, like, I think it's awesome that she's there, but I don't think
Shelby 46:19
that it's not as common as it's what, like, a lot of the people I've connected to are like, I couldn't imagine my five year old doing that. I wish they would. And I'm like, is it really that rare? I
Scott Benner 46:30
just think it's the way you talk about things. So like, wherever you get the confidence from, like, whether it's from the confidence that the tracker is there, right, or if it's me saying things like, you're fine, it'll be fine. This is just what we do, like treating it very like, matter of factly, so that it's not like, Oh no, I have diabetes. I'm going to get like, like, Oh, it's okay. You got low. We'll take care of it, like, that kind of stuff,
Shelby 46:51
you know, we'll fix it. What do you think you need? So a lot of our conversations ended up, you know, we kind of hit that brick wall that I'm sure everybody hits, where it's like, life's not fair. Diabetes sucks. I want this peanut butter jelly sandwich, and I want it now, and I don't want to wait 15 minutes, because who else in the world has to wait 15 minutes, you know? And it kind of becomes like this head butted situation, and we, we decided to handle that by, like, including her in it, like, hey, every now and then, let's let you make your own choice, you know. Here is why I say this might not be the best decision as a meal right now. Like, if you want this, then we should Pre Bolus and wait, because if you don't wait, this might happen, and you know, it may make you feel this way, or it might influence your decisions on what kind of snacks you might can have later. You know, you might have to choose free snacks later versus choosing another. You know, carb heavy snack. And so we started kind of proposing things like that to her, and she started to learn more, like, Hey, Mom and Dad aren't just being mean, like, there's actually a science to this and a reason to this. And now she she does everything like she she gives her own insulin, she counts her own carbs. Obviously, I oversee these things, but she does them on her own, independently. That's awesome. She'll get her own snack, count her own carbs, give her own insulin. You know, she has got gained the independence that where she used to not go outside without me. She comes in the door and says, Hey, Mom, I'm going down the street, you know the drill. Give me my phone, my glucometer and a low snack, and I'm going three houses down. I'll call you if I need you. That's great. That's awesome. It's been hard as a parent to try to let go to some of that like I thought I was going to straight up have a heart attack the first night she came in to me, and we've been working for six months on, you know, hey, this is how you enter, you know, carbs into your pump. You know, we count them. Here's where we read for them. Here's how we count. She's been doing this masterfully for months. And then one night she comes in and she says, Hey, Mom, can you open this? And I said, What is it? And she's like, a yogurt smoothie. And I was like, Yeah, but you, you know, you're like, 150 you probably need some insulin for that. She goes, Oh, that's okay, Mom, I already gave myself insulin. It's awesome. And I about paint. I was like, I'm going to paint. I'm like, You gave yourself insulin? And she's like, Yeah, it's like, well, how many carbs was it? Because, like, I know, but I'm gonna see if you know. She's like, it's five carbs. I read the label. I put five carbs in my pump, and I gave myself insulin. I literally just need you to open it. And I'm like, Uh oh, okay, that's terrific. Can I double check behind you? Like, and she did. She did everything flawlessly. And she's like, here,
Scott Benner 49:23
did you double check it in front of her?
Shelby 49:26
Yeah, yeah, I double check. I'm like, Hey, can I double check? Usually, in our house, like, during the day, if I'm like, close by, she'll be like, Hey, Mom, can I have these goldfish? And I'm like, Yeah, sure. How many carbs is it? And I know because, I mean, we eat this stuff all the time. And she'll tell me, and I'll say, okay, yeah, go ahead. And she'll put the numbers in, and she'll generally show it to me and be like, Hey, am I good? Like, can I go ahead, right? Or I'll say, go ahead and do it. And then I'll walk over when I finish, you know, whatever I'm doing, and double check just to be sure, because the Moby does have, we have swapped Moby, and it does have, you know that that Max Bolus limit that the pumps have, you know, she can. Get more than this much at one time. So worst case scenario, if I were to double check it, then we might just need a couple extra carbs. Well,
Scott Benner 50:07
let me just say this, for people listening, whether you want an Omnipod five or a tandem Moby, there are links in the show notes to the podcast player where you can get that from. So there we go. Let me just slip that in
Shelby 50:16
here. Oh yes, we love our Moby. We swapped Moby in September, and it has been game changer for us.
Scott Benner 50:22
I'm glad whenever, whenever anybody finds a thing that works for them, I think it's awesome. And yep,
Shelby 50:27
that's what I say you I we went to friends for life last year in Orlando, that big diabetes conference, and that was the biggest thing that I heard them say, it's find the pump that works for you. And that's kind of what gave us the confidence to try the switch from Omnipod to Moby, and you know, it was great for us. And I tell people all the time, I'm like, find what works for you. If you're on a pump, and you hear all these other people say, Well, this pumps great if your pumps working for you and you like it, like, don't feel like you just have to switch, because everybody else is switching. Like, it's all about finding what works best for you and your body. Yep,
Scott Benner 51:00
I agree. Yeah. Whatever it is, it's awesome. Arden's been wearing an Omnipod since she was four, maybe. And I had a conversation with somebody last night, and I said, Yeah, I don't think Arden would wear that one. We talked about why, and that person was from a company that, you know, makes the pump. And they're like, No, I understand that. Yeah. I just, I really think it's about what's best and, and what's best is a lot of different. There's a lot of different boxes to check. It's not just about one thing, or it's a lot maybe pieces, yeah, for sure. Well, okay, so I understand the process and, and how you got the dog and what happened, and that you're happy with it, and everything like that. Can I ask about, like, long term. Like, dogs don't live forever. So like, like, how do you plan for that? Like, do you think there'll be a world where I'm not trying to age your dog? I don't know how what your dog is, but 1012, whatever, years from now, she's, you know, how old will she be? Seven to 1017, like, 18, something like that. Like, she'll be older. Yeah, she probably about college age. Right around college age, what if she says, That's cool, I need another dog, and now the dogs are 20,000 or she says, I don't want a dog. Like, how are you going to handle either of those situations?
Shelby 52:11
That's a really good question. I definitely think it's something that you have to kind of consider when you bring in this lifelong best friend to the situation, is they're not going to live forever. So one thing that I loved about our program is obviously, like we learned with him, we were doing so much of the hands on training with him. Honestly, if we needed to do it all over again, I could probably retrain a dog myself. Gotcha, if we knew that it was her desire, because service dogs are a lot of responsibility. They take a lot of time. And I mean, you got to think about it. You're taking a dog everywhere you go. So if she was at a point in her life where she felt like, Hey, maybe I want one to be at home, but maybe not go everywhere, or maybe I don't want one, it would really be her decision. At that point. She's old enough that she knows how much she relies on it that if she wanted another one,
Scott Benner 52:58
you say that. Now when she says, Mom, I'm gonna go from Alabama to San Diego to go to college, you're gonna be like, I'm gonna be duct taping a dog to your face, by the way, like, you know. So yeah, it's gonna be interesting, trust me, it's a wild ride. Definitely will be
Shelby 53:13
interesting. But if we knew that she was gonna need it, or she was in a situation where she wanted one other one, I think we would just retrain. I think we would, when we got to the point to retire him, we would start retraining another one. That way it would be ready to go when needed. But if she decided she didn't want one, then that's obviously not something we would force, force on her, or anything like that. Because, I mean, she'd be into her young adulthood. I mean, that that would be her responsibility to take care of day in and day out. I'm
Scott Benner 53:41
gonna try to stay alive for 12 more years so I can hear what happens when that happens. I want Shelby back on the podcast
Shelby 53:47
very I don't know if you will, if you've ever seen our tick tocks, but if you ever watch them, you will see she's a very opinionated little little girl,
Scott Benner 53:56
just telling you, I want Shelby back on episode 7000 where she's like the kid told me she didn't want a dog, and I cried, and then she said No, still. Or she said she wanted it I couldn't afford, like, I can't wait to see
Shelby 54:07
what happened. Or, by the way, the dog, okay, Mom, I'm divorcing the dog. Or maybe the
Scott Benner 54:11
algorithms get so good, or maybe there's a dual chamber pump that has glucagon in it by then. Or, who knows, you know what I mean, yeah. But Liz, I love that you found something.
Shelby 54:19
How far Tech has come in, the last you know, 1520 years. There's no telling. There could be a cure by then. For all we know, you know
Scott Benner 54:26
to talk about technology is 15 years out. It's not even that far out. Like, look how far it's come in five years. Seriously, you know. And now they're all in this arms race with their algorithms. So you got to think that each company has an algorithm that has its strong points and its weak points, and they're all going to try to make them better and better and better, to compete with each other because they don't. I mean, stop and think about the process of selling something to somebody the amount of effort and time it goes into creating a customer, even right like a patient who says, I want to try. Your thing, you want to keep them once you have them, so the way you keep them is by giving them the outcomes that they're looking for. And so I think that any company who is making an algorithm right now that delivers insulin whose, you know, main focus isn't on making it better, I think they'd be making a mistake. From what I can tell, they're all trying to make them better. So there's a lot of effort going into that. I think that's just good for us. It's good for people. Yeah, I think so too. Yeah. I like them battling with each other a little bit. It's good, you know? It keeps everybody honest. Keeps everybody on their toes. It keeps you from sitting back and going, Oh, we have the only thing they got to buy it. We don't have to innovate, you know what? I mean, that kind of thing. So it's good. It's good times. It keeps
Shelby 55:40
improvements too. I mean, look at the Dexcom new direct watch. I mean, for us, that's a huge, huge feature, because, you know, Paisley trying to have a five year old carrier on a phone all the time and keep it within 20 feet and not set it down and walk away, especially if she's like, leaving the house,
Scott Benner 55:58
it's hard. Yeah, no, I know she's responsible
Shelby 56:01
enough to wear a watch. And you know, when it goes off, say, Oh, my blood sugar is low. Let me eat something, or let me call mom. Or hey, my blood sugar's high. That's what she did the other day. She had her phone in her bag, saw it go high on her watch. And get this, she called me and said, Hey, Mom, my blood sugar just went high. Do I need to give a correction and I said, Yes. And she was five houses down at the neighbor's house, she FaceTimed me, shared her screen with me so that I could double check what she was doing, and gave her own correction Bolus from down the street. Yeah,
Scott Benner 56:34
no, I'm five years old. I mean, listen, my kid knew how to use a cell phone before most people had cell phones, and it's helped her in a lot of ways. I mean, I also think that, you know, I'd love it if they weren't around technology as much. But if you made me pick, I choose. I choose this. I think it's fantastic. Yeah,
Shelby 56:50
same house, five houses down that the dog went when it snowed and let me know her blood sugar was low from five houses away.
Scott Benner 56:56
Jeez, I don't understand how you're a Braves fan if you live in Alabama, my husband's
Shelby 57:01
always been a brave son. I was never a huge baseball fan until I met my husband. And we have a we have a minor league, minor league team locally that we do go to all the time. Yeah,
Scott Benner 57:12
I have to say, I'm going to say this very begrudgingly, as a lifelong Philadelphia Phillies fan, but the Braves put on, oh no, hold on. Let me tell you, the Braves put on a hell of a show at that stadium. They do. I've been to a game there, and it's fun. So it's amazing.
Shelby 57:28
Yeah, I hate to say that we went to a couple of playoff games one year the World Series year, we went to a couple of playoff games, and my husband was dying to go to a World Series game like he he was almost ready to spend big money that we didn't have at the time to try to go to a World Series game.
Scott Benner 57:47
And did he go? No, he didn't.
Shelby 57:51
I know, because it became a if you go, I need to go. And then if we're going to go, shouldn't we take our kids too? Because it could be like a once in a lifetime experience, and then the dollar signs just kept adding up. And yeah, it was the thing we decided not not to do.
Scott Benner 58:07
So one day, I went online, and I was like, Hey, I'm trying to find inexpensive World Series tickets to take my son to the World Series, right? And I figured, like, I know people online. Like, I must know somebody that works for one of these teams. Like, let me finally use this podcast for something valuable for myself. I found people like, hey, my boyfriend's neighbor owns a piece of the I forget what it was like, like, seriously, like, the piece of the other team, let me see. Like, hey. People were like, all over the place trying to figure out, didn't and then everybody was so nice and tried, it just didn't pan out. So I went back to the thread, and I said, Listen, I want to thank everybody. Let's stop looking now. It's not going to work out. You know, the game's like, in two days and but I appreciate all you guys. Is really cool. And some person said, Well, no, I'm going to donate. Like, I don't know what they said. I'm like, I'm gonna throw $20 in so you can buy this ticket for your kid. And I was like, listen, like, first of all, don't do that. I was like, Please, don't do that. I tried so hard for it not to happen. And then I woke up the next day to, like, a couple of $1,000 and people were like, now, go to the World Series. They were like, Thank you for the podcast. Go to the World Series. Like a lot of people threw in, like, a couple of
Shelby 59:15
survey. Y'all listen the podcast. Y'all get all of us diabetics through so
Scott Benner 59:19
much. Shelby, I get paid by I'm okay, like, you know what I mean? Like, it
Shelby 59:23
doesn't matter if you get paid. Like, I mean, let's be honest. I mean, it
Scott Benner 59:27
was an amount of money I was uncomfortable with, like, accepting from people, but like, you know, now they gave it to me. I'm like, I can't give it back. I have to use it. This got out of hand quickly. I was just looking for an in like, You mean, like, I was just looking for a guy that knew a guy. You weren't
Shelby 59:41
looking for the money to get there. You were just looking for the tickets. I just
Scott Benner 59:44
needed somebody to show me which way to like, look, you know what I mean? And so anyway, so we went to this game. Both of us were just a couple of weeks out of having kicked COVID, but we were like, we're okay. Like, it's okay, but, oh, man, by the time the game was over, I looked at but. We both looked like we used up every ounce of energy that the world had for us like to because that was maybe the most exhilarating thing I'd ever done in my life, has been in a World Series game, and they lost, and it didn't matter. It was insane. So that
Shelby 1:00:13
was the thing. My husband did not want to spend the money and then end up losing the game. He's like, if I spent that much money for World Series tickets and then we lost that game that I went to, I would be so infuriated that I would I would be, I would regret spending every bit of money. Yeah, I tried very hard not
Scott Benner 1:00:28
to think about that, because there was an amount of money we put into. It wasn't all from everybody, you know what I mean. And the truth is, if you're a baseball fan, there was something about that game. Every pitch felt like so important that you were just on an adrenaline ride for three hours. It was insane. Didn't matter if you were in the field or if they were in the field, every pitch felt like the end of the game. Like, I've been to a lot of baseball games in my life. There's a lot of pitches just like, go, oh, it's, you know, it's three, oh, this is going to be a strike, and nobody's going to swing, you know, to mean, like, like, that kind of, that kind of stuff. Nothing felt like that. Everything felt life or death. It was awesome. But, you know, anyway,
Shelby 1:01:05
that gives me chills. I do hope that we can go at some point.
Scott Benner 1:01:09
Yeah, well, listen, I was just at a regular old, you know, regular season game between the Phillies and the Braves in Atlanta. And I'm telling you that game was just, it was incredible, like the lights and the music, and it was awesome. It was really Yeah, and people were lovely. Was really great. Actually,
Shelby 1:01:26
yeah, it is great. We actually went one time. My husband had thought that he was 18 years old and was going to go out and play basketball again with some buddies, and tore his knee up really bad. Was on crutches. I was like, nine months pregnant, eight, nine months pregnant at the time in the middle of July heat, and he decided to just get tickets. He's like, You know what? If I can't go to work because I'm hurt, I might as well be sitting in Atlanta watching a baseball game. That's a guy, that's a guy, like, upper level tickets for not super expensive. And was like, we're going. And I was like, Okay, fine, we're going. So we all load up and go, and then we get there and realize, I realized the seats that he bought. And I'm like, you can't climb the stairs to get to the seat. How you gonna get up there? But, yeah, I'm like, how are you gonna get up there? So here I am. He's on crutches. I'm like, eight months pregnant, dying in the heat, and I ended up convincing someone in the like accessibility seats to like, can we please just sit here like nobody's sitting here. It's like, halfway through the game, and I desperately need to sit down, and we can't even reach the seat. We bought dummy
Scott Benner 1:02:34
over here. Thought he was going to climb to the top of the stadium.
Shelby 1:02:39
That was like, please. They did. They did end up giving us some seeds, but very cool. Yeah, it's a great experience, and our kids love it. I do usually kind of have like this anxiety, since we love going to Atlanta, but every time we go that being where we went into DKA, I get I still have a part of me that always has anxiety about going back to that particular place, really, I don't, I think I always will.
Scott Benner 1:03:04
Oh, I hope you shake it at some point. I mean, it would be nice not to feel that way. I
Shelby 1:03:08
mean, it's not like the crippling kind of like I have to obsess over everything, yeah, while we're there. I mean, I go there and every now and then Paisley, it's a big thing in Dippin Dots. And it's like, hey, we nailed that. Dipping dots while we were here. That's a win. Cool. You know, it's not always going to be the way that it was that one time I had
Scott Benner 1:03:25
some popcorn chicken from KFC the day my appendix burst and it I'm not a huge I wasn't a huge KFC person to begin with. But like, you know, a number of years later, I'm not lying to you, a number of years later, we found ourselves like, hey, we need some food. There's a KFC. I went in there, the smell hit me, and I was like, I can't be here. It scared the hell out of me. I was like, Yeah, dude, because I thought, by the way, the KFC didn't give me appendicitis, but, like, it was close enough to itself that I was like, I just made that. I drew that parallel in my head. I couldn't deal with it. All right, Shelby, this was awesome. Do you have anything else that we should have talked about that we didn't
Shelby 1:03:58
I can't think of it. I know a lot of people might probably hear this podcast and think about looking into service dogs. I think the only thing I may not have said is that dog training elite, the company that we did use to Train Tracker, is a national franchise. So if there's any listeners out there that are listening to this and starting to look into service dogs, or even, like the fundraising side. I know Dylan dogs for diabetes that we use as the nonprofit to kind of help with our fundraising. They work with people all over and dog training Elite has locations all over the United States, okay? And from me, you can probably find one in your area, yes.
Scott Benner 1:04:38
And let me offer the alternative view. Get a CGM and put a Juicebox in your pocket there. You're fine. I think there are ways to manage that. There's nothing wrong with you having a service dog, obviously. But like, yeah, it's very doable without as well. Yeah, there's a
Shelby 1:04:51
lot out there, and it could be, I mean, we would still be doing our life today without one. Yeah, absolutely, a little bit easier sometimes. Yes. Yeah, does he help out with different things? 100% Yeah. But you know it's, it's one of those tools that, you know, it's, it's worth it for some people to have, especially when they're so little and they can't kind of tell you as much. It becomes like a security for me, too, as a parent, to know, like, hey, if she can't tell me something, and I believe you know that Dexcom is off, or she's five houses down at the neighbor's house, and her Dexcom quits reading, and I haven't noticed it yet. Well, he's gonna let me know and take me down there and let me know that, hey, she's still not fine, even though she's five houses away. Yeah, it's a lifestyle choice, and it's something some people like to do, and some people, you know, it's not even on their list.
Scott Benner 1:05:36
100% believe it. And I do think lifestyle is a good way to put it, because it really, I mean, listen, Libre is not going to on your floor, and
Shelby 1:05:45
you don't have to go and feed it and water it and bathe it and train it and buy 500 million different dog treats for it to feed it. Yeah, you know, it's
Scott Benner 1:05:53
not a responsibility, like, like an animal is, yep, it's, you know, it's funny, because I think, more more than anything, that's the part that gets me, because I feel such an incredible responsibility to living things, like, down to pets, very small like, I almost, like, don't make me responsible for something else's life. Is almost how it makes me feel. I tell
Shelby 1:06:11
people I have four kids, because I said, I say I have four kids. One of them just has four legs, yeah. Also one
Scott Benner 1:06:16
of them is your husband, because he bought those baseball tickets when he was on crutches. And I mean, really, that is not, it's not a well thought out decision. All right, that's fine. I understand I'd go to a baseball game. So anyway, okay, well, Shelby, Listen, before we started recording, you said to me, I talk a lot, so run me over if you have to. So I just want to point out, because I did run you over a couple of times, that Shelby told me to do that. So before you all send me an email, you didn't let her talk. If I didn't do what I did, oh no, if I didn't do what I did, here's what would have happened. Shelby would have said, Hey, my name is Shelby Landreth, and then you never would have heard me again. So like,
Shelby 1:06:56
forewarned you, Scott. I forewarned you tells me I have to have like, a code word in certain situations, especially when it comes to talking about diabetes. And he he, like, when we go to conferences and stuff, he'll be like, hey, you know that thing that you do? You're doing it again. Yeah,
Scott Benner 1:07:13
okay. Well, no, listen, you were awesome. I very much enjoyed this. I thought you did a great job of telling your story. I really appreciate it. So thank you so much. Well, thank you for having me. Oh, it's a pleasure. Hold on one second for me. Okay.
Head now to tandem diabetes.com/juicebox and check out today's sponsor tandem diabetes care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the tandem mobi system. I'd like to thank the Eversense 365 for sponsoring this episode of The Juicebox Podcast, and remind you that if you want the only sensor that gets inserted once a year and not every 14 days you want the ever since CGM, ever since cgm.com/juicebox, one year one CGM. This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram, and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes.
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#1540 I'm Sorry Eh
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
Amy reflects on resilience, loss, and living with type 1 diabetes, one hand, and now celiac disease.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Welcome back friends to another episode of The Juicebox Podcast.
Amy 0:14
Hi everybody. I'm Amy. I'm 32 years old as of very recently, I was diagnosed with type one diabetes when I was five, and I'm going to give you a little highlight reel I was born with one hand
Scott Benner 0:26
if you're living with type one diabetes, the after dark collection from the Juicebox Podcast is the only place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma, addiction and so much more. Go to Juicebox podcast.com. Up in the menu and click on after dark there, you'll see a full list of all of the after dark episodes. 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 healthcare plan or becoming bold with insulin. This episode of The Juicebox Podcast is sponsored by the twist a ID system powered by tide pool that features the twist loop algorithm, which you can target to a glucose level as low as 87 Learn more at twist.com/juicebox, that's twist with two eyes.com/juicebox. Get precision insulin delivery with a target range that you choose at twist.com/juicebox, that's t, w, i, i s, t.com/juice. Box. Today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contour next.com/juicebox this episode of The Juicebox Podcast is sponsored by us med. Us med.com/juicebox, or call 888-721-1514, US med is where my daughter gets her diabetes supplies from. And you could too use the link or number to get your free benefits check and get started today with us. Met.
Amy 2:21
Hi everybody. I'm Amy. I'm 32 years old as of very recently, I am from Canada, currently living in the US. I was diagnosed with type one diabetes when I was five, and I thought that it would be interesting to talk to you Scott today, because I have a couple things going on in my life that once I stopped to think about it, I realized were kind of strange about me. So I was I'm going to give you a little highlight reel. I was born with one hand, diagnosed with type one diabetes when I was five. My mom was my primary caregiver, and she passed away when I was 10, very unexpectedly. And then I recently in life, was diagnosed with celiac disease, and I have a lot of autoimmunity in my family, and, yeah, I have started managing diabetes, obviously, by myself, since I was 10, and I've ended up here today, and I also went to grad school, and can talk about that. I have I work in genetics, so I thought you might be interested in
Scott Benner 3:15
things like that. Amy, you felt like a little list in your head about things you're going to talk about. I do. Yeah, so you stole my thunder, because before we started recording, I said, I never know what I'm going to say to a person after they introduce themselves, but I know what I'm going to say to you, and what I was going to say is, holy hell, Amy, your note is short, but it is very, very distinctly different than any other one I've ever gotten. Your note basically says I was born with one hand, and my parent, who helped me with diabetes, died when I was a child. And I was like, whoa, okay. Like, that'll give us something to talk about. Yeah, wow. Oh, well, tell me a little bit. First about about your diagnosis. You were, what, five? I
Amy 3:57
was five. Yeah, I don't really remember it. My dad has described it as, like, my parents knew that something was going on because my personality sometimes suddenly changed. I used to be a really nice, sweet kid. I was afraid to talk to anybody, and then, kind of out of the blue, I started acting mean and like he honestly said, like, out of nowhere as a little
Scott Benner 4:17
five year old, how old were you when he told you that
Amy 4:21
I Oh, I was, like, in my 20s, and they were thinking, like, I had a personality disorder or something, they were going to seek psychiatric help, and then at a routine, kind of apparent appointment for my health care, the doctor suggested getting some blood work done, and I was diagnosed. So do you
Scott Benner 4:38
have any brothers or sisters? Have a younger brother and you're Canadian, yes. So you know, what's gonna be interesting here is that at some point I'm going to very like, thoughtfully, say to you, hey, you know, am I using the right colloquial terms for your hand and everything, but at the same time, I'm going to say stuff that it's not going to feel like I care, but that's not going to be the case.
Amy 4:59
That's fine. I have heard it all pretty much by this point. So go
Scott Benner 5:03
for it. My thought was, have you ever imagined your mom and dad in a room with the door closed going, Oh, good, the one with one hand is bipolar? Yes,
Amy 5:14
I have it's
Scott Benner 5:15
going, great, sweetheart.
Amy 5:18
Like, why her? She already has something to deal with. Yeah, no
Scott Benner 5:21
kidding. Oh, so your personality was that off that in his description? Yeah. I mean, they take you what like to like a frozen hut somewhere, and a witch doctor helps you. And then, exactly, exactly, yeah, what province? Alberta, Alberta, okay, is that? Go ahead, I'm so impressed that you didn't say province. I can't do the same joke over and over again. You know what? Sometimes I look up or like a dinner function, and I start talking, and I can see on my wife's face, she knows what I'm gonna say, and I'm like, Oh, I gotta, I gotta rework that line. Also, you live here now, or you're here, yeah, so you're not really Canadian. You bugged out Exactly, yep. Have you been here long enough that you're mad at us or mad at Canada right now?
Amy 6:04
Oh, it's a toss up. It depends on the day. Yeah, it really does. And I've only been here a few months, so I think it's still kind of
Scott Benner 6:10
undecided. Oh, okay, awesome. Yeah, well, maybe we'll see you protesting at a car dealership soon. My question was going to be, is your province the one that starts with like, regular and mph or no.
Amy 6:20
So I don't really remember, and because my mom was my primary caregiver, and my dad has a terrible memory, like I have very little information about when I was diagnosed, what treatment was like. I remember that we had a cloudy and a clear insulin. I don't remember before that. It might have been regular and then pH, but it was pretty old school.
Scott Benner 6:37
That's fine if you don't know. I was just wondering, what's your first memory of how you managed yourself. I
Amy 6:42
really wanted to be able to manage myself, and so I remember taking shots. I think I wanted to be able to go to my grandma's house without worrying about diabetes, and she had to be able to give me insulin, so I forced her to learn how to give me insulin, and she really didn't like to give me shots, so that was a big deal. And I wanted to be able to go to school and not have to go to the nurse's office at lunch. I hated doing that, so I wanted to be able to prick my finger take my insulin. And I did start doing that really young, like maybe grade five.
Scott Benner 7:12
Oh, wow. And that was out of necessity, like you just wanted to you wanted to be more autonomous. Yeah, okay, have you been strong willed like that your whole life? I think so. Yeah, my dumbest question, I'm saving for later. Okay, no, seriously, I have to save for later. You and I don't feel that's fine, because people right now won't feel like you're comfortable yet, and they'll be like, I can't believe you said that to her later. When I say it's going to be hilarious. I just want everyone to know, okay, pumping as a child or No,
Amy 7:42
no, I was also super opposed. I mean, so this is going to the strong willed thing. I guess the answer is yes, because they described a pump to me, and I was so violently opposed to the idea of anything being attached to my body. And then when I was a little bit older, I realized that, I guess, at the time, when I was quite young, I thought that the pump was automatic and gave you insulin without you having to think about it. And I was still violently opposed. And then when I was older, I realized that's not how pumps work. And I was even more furious that they would suggest that
Scott Benner 8:12
you were like, first of all, I'm not wearing that damn thing. Secondly, I'm not letting it make all my decisions for me. What do you mean they don't make all the decisions? What a piece of crap. Exactly.
Yeah, have you been angry your whole life?
Amy 8:24
Maybe, yeah, subtly, you know, I guess I don't
Scott Benner 8:29
know how to ask this, like, when you're born with, it's a congenital what do they call it? A congenital deformity, congenital. How do I say it?
Amy 8:36
Honestly, I don't know. It's the weirdest thing. Nobody ever really described to me what happened, or what it was called. I was just born without my my hand, and my parents acted like it was normal. I mean, I'm sure, I've thought about this so many times, but I'm sure that when I was born, they were like, Oh no, 510, fingers, 10 toes. She doesn't need, like, that basic criteria that you want for every single baby. I
Scott Benner 8:59
thought maybe you thought maybe you thought your dad was like, hey, look, in there, something didn't come
Amy 9:04
out, and they didn't know before I was born either. Like, I guess the technology at the time wasn't good enough that they could see that I didn't have a hand. So it was a total shock for my poor parents in Canada. But then my whole family just acted like it was normal and and it became normal. They they adapted everything for me, like they were so wonderful at just letting me do everything i i wanted to do, and figuring figuring out a way that I could do it. Yeah, wow,
Scott Benner 9:28
that's awesome. Did they treat the diabetes the same way? I would say, so. Did it do the same thing for you? I think, definitely. Yeah, excellent, yeah. I mean, I think, I mean, you are normal. Everyone's normal, right? Like, yeah, you are yourself. Like, there's unless you're gonna judge yourself against something else. Then I don't you know what I mean. The word is kind of meaningless. It just who you are. How do you clap with your wrist or with your chest? I have always disliked ordering diabetes supplies. I'm guessing you have as. Well, it hasn't been a problem for us for the last few years, though, because we began using us Med, you can too us med.com/juicebox, or call 888-721-1514, to get your free benefits. Check us med has served over 1 million people living with diabetes since 1996 they carry everything you need, from CGM to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, libre three, Dexcom, g7 and pumps like Omnipod five, Omnipod dash tandem, and most recently, the eyelet pump from beta bionics, the stuff you're looking for, they have it at us. Med, 888-721-1514, or go to us. Med com slash juice box to get started now use my link to support the podcast that's us. Med comm slash juice box. Or call 888-721-1514, the brand new twist. Insulin pump offers peace of mind with unmatched personalization and allows you to target a glucose level as low as 87 there are more reasons why you might be interested in checking out twist, but just in case that one got you twist.com/juicebox, that's twist with two eyes.com/juicebox. You can target glucose levels between 87 and 180 it's completely up to you. In addition to precision insulin delivery that's made possible by twist design. Twist also offers you the ability to edit your carb entries even after you've bolused. This gives the twist loop algorithm the best information to make its decisions with, and the twist loop algorithm lives on the pump, so you don't have to stay next to your phone for it to do its job. Twist is coming very soon, so if you'd like to learn more or get on the wait list, go to twist.com/juicebox. That's twist with two eyes.com/juicebox. Links in the show notes, links at Juicebox podcast.com,
Amy 12:04
clapping and the monkey bars are like my nemeses. I freaking hate both of them. Clapping. You just kind of like I have the end of my arm. It's basically like, probably the wrist joint, and I have a little bit of mobility, and I have some tiny little baby fingers. I call it my little hand because it I use my, my little hand, like a hand. I do so many things with it. And so when I clap, I just bring it together with my, my big hand.
Scott Benner 12:29
And does it make as much noise as you would get? Or no, sometimes, if you kind
Amy 12:33
of cup the big hand, you can get some, like, resonance going there. And it sounds pretty good, pretty good. You imagine
Scott Benner 12:38
having to think about that as a child, like, why is this not working? Hold on a second. Because I thought the only other way would like, I I've been one I was gonna say I've been one handed, but what I meant to say is, I've had my hands full and a situation where you have to clap out of nowhere and you kind of like, slap yourself in the chest. But I'm also not a girl, so, you know, like, so it's like, oh, how would you do that? And if I didn't ask now, like, the entire interview would be just bound up with me wondering how you clap, which is not the funny thing I was going to say, because I don't think it's funny. I was genuinely interested like so holding a vial of insulin. You could do that.
Amy 13:12
I can do that. I hold things against other things often. So I'll either press something between, like the countertop and my little hand, or between, like, my stomach and my little hand, I use, like, tension, I guess, to hold a lot
Scott Benner 13:26
of things, turn the vial over with your other hand. I don't know which hand, which hand is right
Amy 13:31
and left. My right hand is missing, so I have my left hand. Is
Scott Benner 13:34
there any chance you're left handed? Or did you have to force yourself to do that? Although, you know it's
Amy 13:39
funny, my parents said, when I was born and quite young, I would reach for things with my right hand first. So I think that I was probably supposed to be right handed, and I had to train myself to become left handed over time.
Scott Benner 13:48
I thought that could possibly happen. So you take the left hand, kind of set the vial down, and then spin it, pin it with the right and then approach it with the syringe from the left, yeah. Oh, and you do that as quickly, like, I wouldn't notice it happening, right? If I saw you, like, it would just happen quickly.
Amy 14:05
It happened so quickly. I did a chemistry degree in my undergrad, and there's lots of, like, fine finger work you have to do, like, holding little bios, unscrewing them with one hand and doing something with your other, yeah, and I figured out somehow to do all of those things. And I think it's kind of automatic to me, like, you wouldn't think about how to do it with two hands if somebody didn't show you. And so I'm doing basically the same thing. And I don't know, I couldn't tell you how I like, somebody asked me once how I brush my teeth, and it took me, like, a solid five minutes to think it through, because I don't think about brushing my teeth, I
Scott Benner 14:35
just do it. Yeah, no, it's my expectation. I probably have the same problem. Somebody said to me, like, how do you tie your shoes? I'd be like, so two thoughts here, you're in your 30s, and are you married or dating or single?
Amy 14:47
I am not married, but I've been with my partner for like, 10 plus years now, same thing.
Scott Benner 14:53
So yeah, she's like, Yeah, no, I know it's the same, but I asked because, you know, I just received. Recently saw a post, and this is a reoccurring concern for people online, but of a person who just started to feel like no one's gonna want my kid as a mate, and then, you know, people came in to explain that that's not what's gonna happen. Like, you know, they had all the conversations, but you have two things that it wouldn't be unrealistic to be concerned about that. So I'm wondering about what it was like. Maybe you're going to tell me it's like brushing your teeth, but like, what was it like to try to meet people, to get to the guy you're willing to stay with for a decade?
Amy 15:32
It was brutal. Honestly, it's not like brushing my teeth. So in high school, I didn't date anybody other than this one guy who asked me out, and I didn't want to date him, so I said yes, just for the experience, and we went on one date, and it was awful, like I just didn't want to be there, but I wanted to experience that, and then I was so happy to get out of that situation, and I felt really bad for him, because he genuinely did want to be there, and I had to, like, have a whole conversation with him and break his heart and everything. But I just felt like something was wrong with me. Nobody wanted to date me, nobody wanted to go out with me. I do think that part of that was the fact that I'm, like, painfully, painfully shy as well, and had super low self esteem. I dealt with, like, probably disordered eating in high school. I just, I don't know where it came from, but had, like, the worst sense of who I was, and had no confidence in that. And I think that really, more than the diabetes in the hand, affected how I interacted with people, and probably led to those kinds of things. But it was rough. And then my current partner, I met him, and he's not afraid of anything. He kind of just accepts things and moves on with it, and I think that enabled him to see past all of those things that I had going on at that time, and still want to get to know me. So I won't say that it was easy. And I think it just kind of happened that I met the right guy at the right time and
Scott Benner 16:52
you liked him. I liked him, yes. Well, listen, what you just said is deep, you know, you rolled right over it, but no one was asking, and you wanted to have that experience. And then finally, someone asks, and it's not a person who you're interested in, yeah, yeah. That's tough, you know what? I mean, how soon after you got into the car, did you think I shouldn't have done this?
Amy 17:16
I knew, like, wow, we were on the date the whole time.
Scott Benner 17:19
That sucks. And then you told him, No,
Amy 17:23
I didn't say it like that, like, he was very, very nice, and we were friends first, which made it even worse. I kind of just said, like, I'm really sorry. Like, I'm not in a place right now for this to be something that I can do. And I was, like, 17 at the time. I did not, I couldn't deal with that. It was too much
Scott Benner 17:39
Amy. It probably took that kid two years to ask you to go out. I know. I'm not saying, You know what? I'm just saying.
Amy 17:46
He messaged me, like, years later, and he was still upset about it, and I was like, oh my god, I'm so sorry. Like,
Scott Benner 17:53
Listen, man, I got a couple things going on. You probably got off light just like, let it go. It's
Amy 17:58
super not you. It's actually 100% me, I have so much going on. She just said, like,
Scott Benner 18:03
when you were 17, you didn't give off good insurance vibes. So,
Amy 18:08
I mean, he's Canadian, so it wasn't a concern. But yeah,
Scott Benner 18:11
I understand, Oh, you'd still be in Canada, though. So did you go from 17 year old date to 25 and not date anybody? Or did you date people in there before you found this guy? No,
Amy 18:22
yeah, no dating. Wow, was it lonely, yeah? I mean, I had lots of friends, which was great, and I threw myself into school. I did so well at school,
Scott Benner 18:33
because this was not a choice. No, yeah, there were guys you liked you wouldn't ask out, and then there were guys that didn't ask you. Is that right?
Amy 18:41
I think so, yeah. And since that time, looking back, I've realized that there were guys that were trying to maybe ask me out, and I didn't pick up on it,
Scott Benner 18:53
oh, because you just didn't have the confidence to believe they'd be asking yes. That's how I got my wife. I like way out kicked my coverage. You know what I mean?
Amy 19:04
Like, I had one guy friend, and I went over to his house for dinner with his family, like five times, and I didn't, it never occurred to me that he was maybe interested.
Scott Benner 19:13
Would you have been interested in him? Absolutely. So I'm sorry, by the way, this is your life. This is not my fault when I ask these questions. Okay, no, I know. How much of this do you think gets impacted by you losing your mom before you hit puberty?
Amy 19:28
At the time, I would have said, Oh, not at all. And now I think huge amounts of it.
Scott Benner 19:33
Yeah, you didn't see any of that, like, slap ass between your parents, or, like, any of that stuff, right? Yeah, no, yeah. Oh gosh. You didn't get to see your dad be warm to your mom, or vice versa or anything. I
Amy 19:44
mean, I did I was 10 when she passed away. So I do remember those things, and I know that my dad really loved my mom, and I saw that I saw my grandparents, who lived three blocks away from us, have a super, super healthy and beautiful relationship. So I saw those kinds of things. Okay, but it was a little bit different too, right?
Scott Benner 20:01
You missed some stuff, and she didn't. You didn't like when you started having those feelings and you couldn't. There's nobody to talk to about it or anything like that. No, I'm sorry to ask. But how did she pass so, so young, yeah,
Amy 20:13
so she passed very suddenly from a brain aneurysm, like she was fine, and then one morning, she was not fine, and luckily, we weren't with her. She was at the gym and she was taken to the hospital, and then three days later she was gone. How old she was 40? Wow. That
Scott Benner 20:30
sucks. I'm sorry. It's a long time ago, but still, it must be hard to say out loud, yeah, okay. Do you want kids? I
Amy 20:39
do. Yeah. I think, personally, I think of anything that's going to be the thing that he loves me the most from my mom passing away, just to know what it's like to be a parent and to feel the love for another person, it'll make me feel so much more reassured that I had that from her.
Scott Benner 20:54
Did you that your dad sounds like he was a good guy, but like, did you feel did you feel unloved, or did you just feel like something was missing?
Amy 21:02
Just that something was missing my dad, I know he loves me so much, and I know my my grandparents, my mom's side of the family, they are so good at showing love. I never felt the lack of love at all, but I just felt that something else was missing. Do
Scott Benner 21:15
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Amy 22:26
No, I wouldn't say that necessarily. Did
Scott Benner 22:29
they do it differently for you than for your sibling? No, it's nice. I got extra from my grandmother for being adopted, and I realized in hindsight that my cousins didn't like it, yeah, yeah, but I didn't know that at the time. And
Amy 22:44
actually that's interesting, because my grandparents, the ones who stepped in my mom's parents after she passed away, they have an adopted son, my uncle, and so maybe they already had practice not treating kids differently, because he would not say that he was treated
Scott Benner 22:59
differently. Yeah, it was just my grandmother, like I could tell. Yeah, it tell now, again, in hindsight, but she just thought that I was gonna get less somehow for not being, like, blood related. So she overdid it, which, by the way, I have to tell you, she was my favorite grandparent by a stretch, or maybe even my favorite, like, distant relation. And it does. It has it doesn't at the moment, but it has bothered me in the past, wondering if we were having an honest relationship, or if she was play acting to make me feel better. That's so sad. Does that make sense? It does. Yeah, yeah. I don't think about it much anymore, because I think I've come down on the side of I think it was genuine, but there was time when I had to go through wondering about
Amy 23:42
that, yeah, and that's tough to think about, I'm sure.
Scott Benner 23:46
Yeah. So what does your dad do for a living? Like he's a sled dog driver, or like
Amy 23:50
he's a hunter? No, he works an office job, or he did, he's retired now, but, you know, like a corporate job. I don't want to talk too much about his life, but he worked a
Scott Benner 24:00
regular job. I was just looking for, like, whether or not he was, like, yeah, like, working in an oil field or what he was doing.
Amy 24:06
I mean, he was peripheral to oil and gas. I will say that, of
Scott Benner 24:09
course he was, you guys have two like, things going on up there. It's like, snow and oil and gas and apparently paying extra for stuff you send us, yeah, but that's a different, different story. Also, no one look at your finances today. No, it's so bad. Oh, my God. If you've got $100 saved or a bazillion dollars saved, don't look at it. It'll make you very upset. You don't want to know. Use that little hint to try to figure out what day this was recorded on. Okay, so did you feel judged about diabetes and or your hand by kids?
Amy 24:49
I don't think that I like conceptualized a lot of this when I was young, but my hand Yes, and diabetes No, because I hid it very well. You
Scott Benner 24:58
hid the diabetes. Yeah. Was that to your health detriment, or were you able to manage things and keep it from them?
Amy 25:03
No, I didn't hide it from my close friends, which is who I spent most of my time with. So I would give insulin and and check my blood sugar, and they all knew that I was diabetic and it wasn't to the detriment of my health, because that's the people that I was around most of the time. But in front of other people, I was hesitant. I would turn away when I was giving myself a shot so that they couldn't see it and things like that,
Scott Benner 25:25
really. And they knew, but you were just trying to put distance in between. A lot
Amy 25:30
of them didn't know. I wouldn't say anything about it at first. My teachers all knew and things like that in school, but I wouldn't volunteer information to my peers unless we
Scott Benner 25:40
were friends, okay? And how did your friends treat you? They were great.
Amy 25:43
Honestly, they they treated me like nothing was different.
Scott Benner 25:46
You never had a feeling from them that there was any weird vibe. No,
Amy 25:50
and it's, it's really wonderful. I think that, like the right people kind of stayed, I gravitated toward the right people, they gravitated toward me, and it was very synergistic. And there were some friends that were so lovely, and they would like specifically with my hand, more than the diabetes. They would reach to grab a bag that I was holding if I was going to bend down to tie my shoes or something which I didn't need. And so that always made me feel a little bit uncomfortable. Those people never really stuck around for too long, because I would kind of just spend more time with the people who treated me normally.
Scott Benner 26:21
So people who Baby, do you distance yourself from? Do you do it on purpose, or do you think it just happened the distancing a little
Amy 26:31
bit on purpose? I mean, I found it really hard if things like that happened to say, Oh, thank you, because I wasn't grateful. You know, yeah. So I think it was a bit
Scott Benner 26:39
of both. Did you ever tell somebody I don't need your help, but thank you
Amy 26:43
in a nice way, I'd be like, Oh, thanks so much. I'm fine. Oh, yeah,
Scott Benner 26:47
that's not the same. No. Also, you're young. Like, it's difficult to be direct like that, yeah, especially when somebody's trying to be kind, right? Yeah.
Amy 26:55
And I think in general, I'm the least direct person that's ever walked the face of the earth. Probably, like, I've never said aggressively no to anybody about anything, pretty much,
Scott Benner 27:03
really, yeah, no, I should try it. It's awesome.
Amy 27:08
That's my like, current goal. I need to be more assertive, not aggressive. Assertive. There we go. Yeah, are
Scott Benner 27:13
you too Canadian? Or is it not Canadian? It's you, it's
Amy 27:17
me. I think it's made worse by the fact that I'm Canadian, but it's something deeply within me. I
Scott Benner 27:22
listened to an episode that went up recently with a Canadian, and she said, sorry. And I kind of, I jumped into sorry for a second, and then I was breaking the word down, and I said, what's interesting about that is the way you say the word makes you sound like you're apologizing while you're apologizing, like, it's, it's like, Oh, I'm sorry. Like, almost like, like, stretching it out, like that, I don't know, like, it adds emotion to it, like, I am really, really, really sorry about this.
Amy 27:49
People here will say, I'm so sorry all the time when
Scott Benner 27:53
you're sorry and you don't have to sow the story, you know what I mean? Like, it's like, saying very much, a lot It is, yeah. So it is, so it is a little like baked in, but it's also you, and you felt like you didn't have a lot of self confidence growing up. When does the self confidence come?
Amy 28:15
Has it come? Yet? Is the question? Oh,
Scott Benner 28:17
I thought maybe you got it when you found the boy. No,
Amy 28:20
I don't think so. I, as much as he would like to take credit for that, I do not think that that's what happened. Do
Scott Benner 28:28
you think he would take credit?
Amy 28:31
Oh, maybe,
Scott Benner 28:35
listen, I've done that to my wife. I just want to be clear. I'll be honest, right? Like, my wife had a couple of troubles. And like, you know, she was directed one way by her family, and she was young, and I had a different way of thinking, and so I was able to interject that, you know what I mean? Like, I was able to say, if I was you, I'd be like, I'd stand up for myself here, or I would say no to that, or, like, that kind of thing. She didn't have it in her either. She's cat. I for her, I think it's because she was Catholic and she was dominated a little bit by her parents. But you have any of
Amy 29:09
that, no super non religious in my whole family. No religion. No religion. There was some before my grandparents grew up with religion on both sides and on both sides, they kind of said that's enough. And raised my parents non denominationally, I guess, non religious. And I was raised like even further away from religion. Okay,
Scott Benner 29:28
hold on a second. I have to answer Arden, and I'm going to tell you why we are trying to help her with she's asking me what time a thing is good, after 11. She's setting up an initial appointment with a hypnotist. Oh, okay, to try to help her with her anxiety around needles. Ah, I've
Amy 29:50
been listening to you talk about that recently, and I'm super interested in that. Actually.
Scott Benner 29:54
Yeah, we're down to like, this is the last thing we can think of. Yeah,
Amy 29:57
it sounds really difficult for her. Oh, my God. So
Scott Benner 30:01
the best that we've come up with so far is that someone sits next to her, yeah, she gives them her non dominant hand, and then she blocks the injection site with her dominant hand, and then works herself up to move her not her dominant hand, over to the hand hold where someone has to grab her hard enough that she doesn't feel like she can break away. It's really terrible, and that's so sad. It's a terrible struggle. So, like, as you're watching this happen, you're like, my god, like, this can't be forever, you know, like, we have to figure out a way around this. And, you know, I mean, it's gotten down to the point where, like, I've joked with her, I'm like, you want to try weed or something. Like, what's like, I don't care. Like, you know, like, what it will help you. And she's like, No, no, no, no, I don't I. She feels like she's gonna conquer but I'm like, I don't think that's how this works. So we're gonna try this. She's gonna try to go to a person who's just gonna kind of, like, get her into a relaxed state and try to feel make her feel more better about it. I joked with her. I was like, I'm gonna send that guy a list of things he could talk to you about while you're hypnotized, but I won't. But, you know, do
Amy 31:03
you think if she was not diabetic, that this still would have manifested?
Scott Benner 31:08
I mean, probably not, right? Like, how often does, like, a an average person get stuck with a needle? No, it's just not a thing. Yeah. And even if you hate it, what do you do it every couple of years for a blood, for blood or something like that, yeah? Arden. I mean, listen, Arden's had blood work done every year since she was two. Then you throw in the hypothyroidism, so then there's probably happened more than once a year, and then they give you a medication, and they're like, All right, well, look, we'll draw your blood. We'll do the meds for three months. We'll draw it again. So now you're doing it three times a year. The start getting smart about telling the doctor, hey, can you draw the other labs while you're drawing these, please. Yeah, it's
Amy 31:42
terrible. I have so much like hatred for just going to the lab to get blood work done, and the fact that you have to wait, like I avoid that for months and months and months completely irrespective of a needle phobia. So I can kind of relate in
Scott Benner 31:54
some ways, just right. Yeah, it does. So now I am doing something I never thought I would do. I'm typing a credit card number into my text so she can complete this intake form. Give me one second while I send the three digit code from the back. There we go. Awesome while I'm making the podcast. Also, I'm so good at this at this point, I probably wouldn't have had to tell you I was doing it. I'm really getting better at this, like, to the point where, like, I found myself the other day somebody was talking, and I was like, Oh, I wonder about something completely different. And I started researching it and still talking to her, and I'm like, Oh, my God, I might be getting better at this again. So, too good, too powerful. Well, you know, more like Oz, though, because once you move the curtain, you're like, Huh, that's what's happening. Never mind. And there's a gecko in the room, yeah? Well, I appreciate the joke, but it's a chameleon.
Amy 32:47
Oh, I'm sorry. I really don't know the difference, nor do I really care. I
Scott Benner 32:50
wouldn't imagine from being from Canada that you've ever seen one No, yesterday, I was wearing, this is crazy. I was wearing light colored socks. There are two colors that he hates, and so I didn't have shoes on. I was making the podcast, and I looked over at him while I was talking, and he is, like, defensively hiding behind something, staring at me. And I'm like, Oh my god. So in the middle of podcast, I said to the person I was talking to, Mike, some so sorry. I'm so sorry. I'm like, but I said, I have to put my shoes on quickly. They put the shoes on, and the chameleon was like, Oh, thank God, whatever that is isn't going to kill me. And then he went about his business so much better. It's hilarious. Everyone should get a chameleon. I actually believe that. Really, Oh, they're so awesome for me. It's a perfect pet. Would you have pets? I grew up with a dog. Dogs. Yeah, pull the slide. Of course, you need at least six, right? Six. That's what I've been told. Why do you want to come on the podcast? Like, because you have such an like, I mean, it's such an interesting setup, but, and I do feel like you've been impacted by it, I have, yeah, I really would just like you to as much as you're comfortable, just sort of open up about what it's been like to have these two different difficulties.
Amy 34:02
It's honestly been strange. I think growing up and becoming more aware of who I am in the world, I've realized how much they've both impacted me, as has not having my mom around, and I just went through so much of my life, kind of pushing through, muscling through like I have to do well in school. I have to go to university. I have to do the next thing, okay, I don't I not getting a job. I guess I'm going to go to grad school. I have to do well at grad school, I have had these goals put in front of me that have made it very easy to ignore how I'm feeling and how I'm navigating the world, and when I stop to think about it, it impacts me. It being like everything that I have going on really, really deeply impacts me, and impacts, I would say, most of all, like my confidence in the world and. Really noticed that when I in grad school, became an expert in something, and then had so much comfortability and confidence in speaking about my research topic, and I had never felt that before, and I think most people feel that all the time, and that was kind of a big moment for me, because I think going through the world like you and other people, just feel comfortable a lot of the time. And I had never felt that, because I was always hiding my hand. I felt that if people saw my hand immediately, they would judge me. So on a first impression, I always wanted to have my hand hidden. And for a long time that was subconscious, and now sometimes it's conscious. In professional settings, I'll meet people over zoom where you can't see my hands, and then they're surprised when they meet me, but they've already formed a first impression, which I find is super, super valuable in how they treat me. And I don't know if that's the best or healthiest way to navigate this situation, but it's kind of what I developed,
Scott Benner 36:01
yeah, do you think it's true, or do you think it's how you feel? Do you see what I'm saying? Like, do you think, yeah, I'll let them get to know me as a person with two hands, and I'll hide on the Zoom. Then when they meet me, they'll know me already, and then they won't feel differently. Do you think that's actually happening, or do you think you just talk yourself into believing or have you had situations where somebody has seen your situation and then met you in person and treated you oddly? Yes
Amy 36:26
to that for sure. Okay, I think it depends on the person, because there are and I'm sure most people with diabetes can relate to this, especially now that we have like visible technology. Previously, we would walk around the world and nobody could tell that you were diabetic unless you were actively treating something or had a pump on your body, but now most of the time, people are wearing CGM wearing pumps and and you'll get questioned about what they are. So it becomes more of a visible thing, yeah, and that's kind of what my hand has been for my whole life. And there are people, this is why I say it depends on the person, because there are people that when you meet them, the first thing they look at is my hand, and they will keep looking back at my hand, and I have to kind of be like, hey, eyes up here, but nicely, because it drives me crazy, I feel that there's a sense of judgment often, and especially if you keep looking at my hand while you're talking to me, and you're kind of like angling your body away from me, like you're not super comfortable, and you don't know how to navigate it, and you don't know if I maybe Need help with something, or if I can do something, so I have kind of tried to kill it with kindness. I'm very positive and I'm I try and redirect the conversation. Make really strong eye contact and smile, especially if I'm not talking to the person, yeah, and I notice somebody staring at me, I will look them right in the eyes and smile and say, Hey, how are
Scott Benner 37:39
you? But that's the thing. Now you have to do not a way you want to be. Yeah, yeah. Okay. You know it's funny. I would have joked in the past about, like, I mean, it's just, I don't know if I'm a boy. I've been a boy my whole life. Like, you meet girls, like, I don't know three guys that don't hit the like, the fun parts first, when they meet somebody, you know what I mean, like, and so it's, it's usually like, really, it's usually like, chest face, and then if that made you happy, you look for the rest people do that. Like, I don't think they're doing it on purpose. I think it's just, listen, I check out, old ladies. I don't know it's like, my brain goes that way. Now, I would have said before, like, Oh, boys, you know what I mean. But I have a daughter, yeah, I've been around a lot of girls. I have a wife, yeah? And I go out in public. And I think you guys all know I pay a lot of attention to what's going on around me. Every living woman checks out, every other living woman when they walk past, I mean, floor to the top of your head and back down to the floor again. And they do it with like, precision, uh huh, right? Like people, you're just assessing each other. And so I don't know what, like, gutturally, what women are assessing each other for. I do know, because I'm a boy, what I'm assessing for. But then you're saying they hit the hand, and then they're stuck, Yeah, completely. They start spinning into like, Will I need to help this person? Is she okay? They start getting protective of you, even though they don't recognize that's probably what's happening. And, or get scared or put off, right? Yes, and,
Amy 39:08
or, I think that they think, even like subconsciously, that mentally, I might not be all there, because I think that's kind of the human instinct when you see a disabled person, sometimes that, oh, I don't know how I'm going to interact with this person? Do they need me to interact in a different way than I would normally, like, mentally, physically, I don't know how to navigate this. It's a bit of a panic. You
Scott Benner 39:28
know? What's funny is that I just realized that as a boy, I've never seen a pair of breasts, and thought, no, no good. Every one of them seems fun in a different way. But I guess that doesn't happen with the hand thing. I just realized I've never looked at a woman and then thought, oh, like, I don't have that feeling afterwards. Like, you know, it's not like an assessment in the way that you would think. I don't know how to put this exactly, and I know I'm going to get an email from some, like, overly woke person now, because I also said that your parents, you didn't get to see them play slap ass earlier. So that's going to, like. Yeah, trust me, I can already feel it coming, but I'm just trying to be honest, I can look and think that person's my type or not, but I always see like, intrinsically, like, I see value in everybody I look at and I can see how people are pretty in ways that aren't classic and things like that. And I often, I don't very often, look at somebody and go like, Oh, the horror. Do you know what I mean?
Amy 40:22
I so much agree with that, and that's honestly so healthy for me to hear. And also, like in high school, the self confidence thing that I dealt with, I feel very much the same as you. I have never looked at somebody like my friend, another girl, and thought that there was nothing redeemable about them. I have always thought that most other people are, like, so incredibly beautiful. Everybody is beautiful in some way, and typically, the things that they are picking out about themselves, I never would have noticed if people are describing their insecurities to you. However, when I look in a mirror, I'm like, oh, but I'm the exception. Oh,
Scott Benner 40:55
wow. You're like, I'm not judging anybody else. But look at me. What a mess. Yeah,
Amy 40:59
like everybody else is fine. Why did I turn out this mutant person?
Scott Benner 41:03
Oh, that sucks. You tried a therapist.
Amy 41:07
I did, yeah, I went to a therapy in university, and that was really helpful. I guess you would probably say College, well,
Scott Benner 41:15
just because what it's called, but, sure, good, yeah, just kidding.
Amy 41:19
But yeah, it was really helpful. Okay?
Scott Benner 41:21
And just talk therapy and somebody where, where you could say to them, I feel different, I feel ugly. I don't like whatever you end up saying, like, right? And they help you get through that, yeah, but meanwhile, you're not you're ignoring boys that have taken you to dinner 17 times. Yes, your whole life would have gone better, Amy, if you just would have chilled the out for five seconds.
Amy 41:43
I know I have just begun to realize that. And like my partner, the that is the thing that he tells me more than anything. Like, why are you worried about this? This is not something you need to be worried about. And I don't understand that fundamentally. Like, well, you're
Scott Benner 41:58
programmed at this point. Yeah, seriously, this is how you've lived your life for so long.
Amy 42:02
We're not worried about everything. We don't have adrenaline dumping into our veins always, like, before this call, I was so anxious, and then as soon as we started talking, it was fine, but,
Scott Benner 42:12
yeah, I don't know. I watched my wife worry about stuff. I'm like, Oh my God. Like, stop. And then she'll like, we'll figure it out. And I don't think there's two seconds before she pivots to something else. Yeah, I'm just like, if you just like, if you could just chill out, I think everything would be like, so much better. I haven't been upset about anything in two decades. Something fairly horrible happened recently, and I was like, well, that sucks, and I never thought about it again, like during the phone call where the person told me I had given up on it. In the middle, I was like, Okay, well, I guess that's not a thing that's happening anymore. That's so healthy, is it? I think that's better. I just think of it as being boys and we're just, like, not worried about anything. Like, I think it could be too far the other way.
Amy 42:54
Yeah, oh, I would agree with that for sure. Yeah. We
Scott Benner 42:58
should be able to give it back and forth to each other, a little bit, that would be awesome. Because if, seriously, if my wife had two tablespoons of, I don't give a from me, like, she'd be really, like, she'd be happier. And I think she knows it, and can't, like, she can't stop it, you know, it's,
Amy 43:15
it's built in, like, how, how do we do that? What do you mean? Just don't worry. I'm
Scott Benner 43:19
telling you, last night, Arden's blood sugar went up and beep, beep. And before I could orient myself, my wife, in the most asleep and scared tone is, Arden, okay. What's wrong is everything? Okay. What's wrong? I'm like, Oh my God. I'm like, I don't know. I'm not awake yet, and she's not awake either, but like, half asleep, having been asleep for four or five hours, she heard Beep, beep, and she was like, if you'd have put a gun in her hand, she would have started shooting, yeah, yeah, you know. And I'm like, I'm like, Oh my God. Like, I feel terrible. Like I genuinely, I've had a lot of conversations with a lot of people, and I usually think of it as the thing that happens after you make a baby, but like, you didn't make a baby? No, you got it somewhere else. You got it from the Everyone's looking at me. I'm not the same, I guess, yeah, and my mom's gone. Sucks. So how soon till we push this kid out so that we can make all this go away? Hopefully, a couple years, for sure, a couple years really, are you building a professional thing that you're still working on, or is it just not
Amy 44:26
the right time? A bit of both. I am working professionally towards goals at the moment that are that are making that harder. I don't live in the same city as my partner right now either, so I would like us to live in the same
Scott Benner 44:38
city ideally. Yeah, no. I mean, listen, you might as well just let a Rando knock you up if that's what's gonna happen. Gonna happen. How were you not in the same city?
Amy 44:44
We got into grad school at the same time, but not in the same place. And once you get into grad school, you're kind of locked in. It ends when it ends, it doesn't end on a prescribed timeline. So he is still finishing up that timeline in the city that he got. X. Accepted into I finished and moved on to the next thing. But the job that I got is in the city that we can kind of both work in afterwards, and we thought that we'd end up here together sooner, but we're not here
Scott Benner 45:10
yet. I'm sorry. So you're alone again. Oh yeah, in America, in America, how disgusting I know. Are you somewhere warm or cold. It's very nice and warm. Do you miss that Canada thing at all? Or no, the cold. I mean, I
Amy 45:27
miss the healthcare, although it's not perfect, I will say that for sure,
Scott Benner 45:30
not paying for it, yeah, out of pocket, right? At least, had a big shock here.
Amy 45:35
No, not really. The Alberta in Canada, where I'm from, is more like the US than a lot of other Canadian provinces. So the health care there was public when I was growing up. They're trying to push toward private now, or more privatized, so that kind of is familiar to me anyways, and like when I moved to grad school, I had to navigate switching insurances, and as a student, you have horrendous insurance, so even though we have you can see a GP or an endocrinologist for no cost, and you would maybe pay a small co pay. Here, prescriptions are not fully covered, and if you have terrible insurance, they're covered even less, which I did for the majority of my adult life, and have been
Scott Benner 46:17
paying for insulin. It's really hard. Yeah, it's hard. No kidding, can I go back and ask you how you feel like having a baby will close a circle for you? Yeah, because it sounds like you've really thought about it. What do you think is going to
Amy 46:33
happen? So it's my partner has a lovely relationship with his mom, and that's probably like, the person that I've been able to see most closely, like a maternal relationship from an outside perspective, like, I know my grandmother, for example, loves me more than life itself, but I think that's true of everybody's grandmothers. The Maternal relationship seems just so lovely. I don't know what that's like, but it's like this unconditional love, thinking that you're like, the best person ever, your kid is the best person ever, and also that it's just like the sense of connection, and I don't have that. And my dad is lovely, and, like, I love him so much, but he's not a warm, fuzzy guy at all. He's very reserved, and I do not doubt that he loves me, but he doesn't show it in the ways that I guess, that maybe I needed as a kid. Yeah, he shows it in other ways. And I think having a kid and just knowing what that feels like from the other side will give me, like the certainty that my mom felt that for me when I doubted that a lot growing up. Okay,
Scott Benner 47:38
and so you're going to try to complete her job, almost like, yeah, do what you think she was going to do if she was there. And then, oh, that's nice. And once that happens, you'll be comforted to know that that's, this is probably, I'm probably like my mom, and this is how my mom was going to treat me. I think so. Can I ask, what happens if you're a parent? What happens? Then
Amy 48:04
we don't think about it ever again.
Scott Benner 48:07
Then heroin, Scott, never mind. You're ready to be a parent. Your life situation is stopping you. Is that right?
Amy 48:13
Yeah, I think so. I think, like maturity wise, I still have a ways to go just wrapping my head around that idea. But yeah, how old
Scott Benner 48:19
are you again? 32 My God, maturity wise, because you've been in school so much, I
Amy 48:25
guess, yeah, yeah. I mean, I feel like I'm behind everybody. Because
Scott Benner 48:29
you want to get out in the world and and let the world on you a little bit and see if it keeps you down. Yeah.
Amy 48:33
And like, I've never made money. I would love to, like, be financially a little bit more relaxed things like that.
Scott Benner 48:41
There's a question, does that put you into a panic? Not fascinating, that you found the thing that I'll panic about,
Amy 48:50
I think that my education has set me up really well. I really lucked into what I do. I think that I can get a job that will pay me very well. Okay, so I'm feeling pretty confident about that. I'm I'm still kind of in an in a transitionary career stage. So that's it's getting better, but it's not fully realized yet. It's kind of like when doctors do residency right after med school, like they know that they're going to be a doctor in a prescribed amount of time. I'm in the same stage of my career. And in Canada, we don't like I didn't have to take out student loans for grad school, and you get paid for grad school. I was able to survive without going into debt. And I've just never felt like I had more than enough. I had just enough. Just
Scott Benner 49:29
enough. Listen, I grew up very broke. I still like, if I'm walking, I see a nickel on the ground, and other people walk by it. I'm like, what's happening? Does no one else see this nickel? My God. And I bend over and I pick it up, like, this is mine now, yeah, so I guess my situation gave me the thing that I panic about, yeah, yeah. I always feel broke, actually, no matter what happens to me.
Amy 49:52
So yeah, I think that I will too, probably, yeah,
Scott Benner 49:56
yeah, I'm not wealthy, but I can't stop trying. Trying to provide that kind of feeling, because I felt like nobody was providing for me when I grew up, like everything was like, can you believe there's food? Can you believe we have a place to live? Can you believe the car moves like, you know, like, like everything was just like, such a I can't believe we're getting this done. Like, you know? Yeah, I know it was a long time ago, but my mom used to grocery shop with $40 a week. Yeah, that's crazy. Yeah, right. It was really something so and now you literally can't go into a place and get lunch for less than $30 it's ridiculous. And it's the same lunch. It sucks just as much as it did when it was $20 I just wanna say they didn't make it any better, that's for sure. And the price of eggs is insane. Well, listen, I think we've all talked about that to death, but yeah, like, it is shocking to, like, pick up a dozen eggs and it's $9 like, $9
Amy 50:46
yeah, that was a shock to me, because it's not as bad in Canada. I guess, like, the way that we have chickens is different, so we're not as strongly affected by the bird flu. So there are always a lot more eggs in Canadian grocery stores at the moment than there are in American ones.
Scott Benner 51:00
I said something to my wife the other day around something that I bought in the grocery store. That was that I haven't heard anybody say, like, it's a thing people used to say constantly when I was younger, and you're 32 you're not gonna, like, you have no context for this, and I'm gonna ask Rob to bleep it out. Okay, but like, I said to my wife, like, just it was a knee jerk reaction, I swear to you, it's not a thing I haven't said in 25 years, I bought this thing. It was so expensive. I said to my wife, is it gonna me too? And like, that's how expensive it was. And she laughed, and she said, I haven't heard anybody say that a very long time. And I was like, I haven't been prompted to say that in a very, very long it just used to be a thing that I heard broke people say to each other, because no matter what they spent money on, they didn't have any. There was nothing extra, you know what I mean, like, so you almost wanted your thing that you were doing to, like, have, like, multiple uses, or, like, that kind of thing. Anyway, I know it's, it's crass, and it's 2025, and probably people don't talk like that anymore. But I blurted that out the other day, and I was super it wasn't contrived. Like, you know what I mean? Like, I wasn't like, Oh, let me say something throwback and weird. It just came out of my mouth. I was like, Oh, my God, this is so expensive. So anyway, it makes me very upset. I love that you're not worried about that one thing
Amy 52:14
I know, yeah, like, I am, but not on a level that it concerns me daily. That's insane. That's the thing.
Scott Benner 52:23
That's the craziest thing you've said since we've been talking. Just in case you're wondering, to me, at least, that's really something, I'm gonna ask a really difficult question, because you didn't date much? Do you ever feel like I didn't date enough?
Amy 52:36
No, I think it would have been fun, but at the same time, no, for some reason, I'm the kind of person that has a few close friends, and I like it that way. So I think that dating a million people, I probably would have had a similar experience, like date a few people. I'm also pretty loyal, so I don't know how that would have worked out. Like i i may have dated somebody and married them if I started dating them in high school, and that was not what I wanted.
Scott Benner 53:04
So where do you think that comes from? Oh, because
Amy 53:08
everybody that I know did it, and I was like, why?
Scott Benner 53:12
Oh, that's interesting. So I was gonna I was guessing, but obviously your answers much more useful. I grew up in a divorced household, so when people argued like, I used to get very upset, because I thought when we argued in my new family with my wife and my kids, that meant we were gonna we were all gonna disappear out of each other's lives. And I was wondering if you thought like, if you could find somebody, you'd hook on to them. Because your mom, I know your mom passed away, and I know it has nothing to do with her, but it still feels like she left you, right,
Amy 53:42
it does in a lot of ways, yeah, especially the craziest thing is that I was so afraid for some reason. In a couple of years before she died, I read this book series called heartland, which is now a major show. The major premise of the show is that the mother dies at the beginning, and I should not have been reading that book at eight years old, and so it really hit me, and I was so worried that my mom was going to die for years before she did, and she promised me that she wouldn't. And that really, really wrecked me when she did pass away.
Scott Benner 54:12
Oh, I just want to say Amy. It just wrecked me too.
Amy 54:14
I still find that hard to talk about. No kidding.
Scott Benner 54:19
Oh, my God. Oh, so you it's just like everything else. Kids, at some point, kids come to their parents, and they said, just so, you know, Amy, this is going to happen. Yeah, if you get to it soon enough, you'll be young enough to be able to hear them when they say it. But they'll be like, you know, am I going to die? They ask you at some point, and then you tell them with the same confidence you told them that Santa Claus is real. You tell them, like, no, absolutely not. You're gonna live a long life. You're gonna be super healthy, Mom and I are gonna live forever. Like it's a thing you say because they're so young that the truth of, I don't know, yeah, it's hard to contextualize it at that point. Yeah. So that happened. You read a book, you went to your mom, and she said, No, no. I'm gonna live forever. Yeah,
Amy 55:01
don't worry about it. You're gonna be really, really old when I die. And I was like, Okay,
Scott Benner 55:05
perfect. Or 10 or 10, how did your dad handle it?
Amy 55:10
Oh, my poor dad. I don't know. Honestly, like, I have never seen my dad cry before that point, and I've seen him cry so many times now, I think it's really good, because he is quite an emotional person, so I think it's good that that was a was something he was able to express, like the sadness to us kids. Yeah, I think it really devastated my family. And my grandpa passed away recently, like when I was an adult, and so now I kind of have a different perspective of it, because I know what people mean when they say, Oh, your mom loved this, or, Oh, she would have been so proud of you. Because, like, I don't know would she have but I know what my grandpa would have thought about things now, because I knew him as an adult,
Scott Benner 55:50
you know. Oh, so you have context now for all those things that people tried to comfort you with about your mom. Oh, that's lovely. When's the next time you'll see your dad in person, probably in a couple months. Would you consider telling him that a podcaster told you that you wished he was more openly warm towards you and give him a big hug?
Amy 56:08
You know what's funny my partner, we were at my dad's house for dinner one night, and we left, and I was just so sad about something I don't know, one of the millions of things that I'm sad about in life. And he turned the car around, and my partner did, and we went back home, and he said to my dad, you need to give Amy a hug because she's really sad, and you hugging her would make her feel better, and she just needs some support. And he did. You
Scott Benner 56:30
were shocked by that, like, as it was happening, or you're like, This old man, ain't hugging me, is that what you I was like,
Amy 56:35
he's never gonna understand. He just thinks I'm overly emotional. But he just gave me a hug, and I know he would if I asked, but I also just felt like he was dealing with so much, like both administratively, when somebody dies, it's a nightmare. Yeah, I just went through that with my grandpa, and I did everything for him, right? And so my dad had to do that while having two kids. My brother was a baby. He was six years old. We had a dog like my mom's whole side of the family who lived in the same city as us, was absolutely decimated. So they, they weren't really, like, able to help, other than taking care of my brother and I. I do not know how and my dad got, like, six weeks off of work or something, and then he had to go back to work. I don't know how he did any of this at all, to be perfectly honest with you. So I just felt like I have to kind of deal with whatever's going on in my life, because everybody else has enough going on I need to handle. So
Scott Benner 57:27
you're protecting everybody I see, I mean, and then there's all that time he's got to raise this little fish to give to the penguins and everything too. So absolutely takes forever. So you feel like you saw your dad emotional for the first time, he was overwhelmed, and so you're gonna be strong for him, and then while he's being stoic and you need him to be comforting, you're not gonna ask him for that comfort, because you think he's already doing everything he can.
Amy 57:56
And I did ask him several times, but I just felt like I needed more, like I needed infinite comfort, and I didn't always have somebody around
Scott Benner 58:03
for that. Need you still feel like that right now?
Amy 58:07
No, I think in some ways I've gotten through it. Yeah, it still hurts, obviously, but I don't feel exactly that way anymore. Yeah,
Scott Benner 58:15
no. I mean, you said your mom at some point, and I almost cried because my mom died. I know, I know. I mean, my mom was in her 80s, like, you know, I mean, like, and I'm talking to you, I'm like, I got no right to be upset here. And then I thought, Oh, God, that's what you were doing for your dad. You're like, I can't be upset here. He's upset. Yeah, yeah, we should all just be upset. It is
Amy 58:35
sad. When you were talking about your mom on the podcast, I was crying right along with every episode. It was so
Scott Benner 58:40
touching. It's part of my skill of making people cry that I've never met before. Yeah, sorry, and
Amy 58:46
advocating for her and her health at the end of life with the different cardiologists and things that you were discussing like that was, it was just so it meant so much to me to hear that from another perspective. Do that was really healing to me in some
Scott Benner 58:58
ways. Yeah, did you feel cheated while you were listening to it.
Amy 59:01
I mean, I always do one time when my my dad's mother passed away, and he was sad, and I laid into him and said, You have no right to be sad. You are, like, 50 years old. I was 10 when my mom died. You need to get over it about something like and that's obviously not fair to say to him, how
Scott Benner 59:19
old were you when you did that?
Amy 59:20
I was, like, 14. Oh, it wasn't fair.
Scott Benner 59:23
What are you gonna do? You're 14. He understood. You didn't know. I would admit, yeah, for sure. Listen, it's a big part of what you do when you're in a family, is at some points or others, you have to, I mean, this is my opinion, but like, at some points or others, you're a punching bag for the people who love you, yeah, and they know that you're not going to abandon them for saying the thing you that you're going to say, even though, as you're saying it, you think this isn't fair. I don't mean this or whatever. It just feels like it has to come out, you know exactly. Yeah, geez, oh, we're at an hour already. I'm sorry, do you have a couple more minutes?
Amy 59:57
I do? I have until the top of the next hour? Okay, oh, okay.
Scott Benner 1:00:01
How do you manage your diabetes? Every once in a while, I should have a note in front of you that says, hey, you're making a podcast about diabetes. How do you manage today? Are using a pump?
Amy 1:00:10
I am. I don't really remember how it happened, I guess I so. Because of all that stuff that was going on, I just handled my diabetes when I was younger, and I did pretty well. My a one, Cs were in the sixes. I had lots of variability, so sometimes it was a cheated six, sometimes it wasn't, depending on how good I was. But I mean, I saw endocrinologist, dietitian and nurse for three hours every three months when I was growing up, so there was a lot of like, supervision of my diabetes, although, actually that's something I'll get back to the pump question eventually, but that is something that I really wanted to mention on the podcast, because I'm sure that other people have had their primary caregiver pass away, or even that in a transition of care, parents will assume that a kid knows how to do something, even if they're still around. Even though I was at all of the diabetes appointments for my entire life, it would have been really helpful if an endocrinologist had checked in and been like, Hey, do you know what insulin is doing, why it's important for you to take it and like, when you need to take it? Because I felt that we didn't come back to, like, ground zero when I took over the care. And it would have been a really good thing for them to do
Scott Benner 1:01:19
for me. Yeah, they acted like, you've been at this for five years already know what you're doing, yeah? And I'm like, 10 years old, sitting in a chair like, okay, yeah, you don't know what's happening. I have no idea. So
Amy 1:01:29
I figured it out through trial and error, and it would have gone a lot faster if I'd had some more information growing up. And because of that, like, I denied getting CGM for a long time. I was not interested in having anything attached to my body, I think because of my hand, like I was 0% interested in having anybody have having another reason to stare at me and having anything attached to me. For some reason that was just not what I was about. But then, while I was in grad school, right before the pandemic, which I think worked out well by accident, I had a new endocrinologist, because it was very difficult to find endocrinologist in Canada also. So I found this new one, and he's like, Hey, I have a free FreeStyle Libre here. Do you want to try it? And in my head, I'm like, No, thanks. But at the same time, I was like, Sure. Like, there is no downside to this. I'm not committing to anything. Why not? Yeah. So I went home and I did not put it on, put it on the shelf and moved off.
Scott Benner 1:02:24
Because, why did you not put it on?
Amy 1:02:27
Because I still didn't think that that was going to be that helpful to me. Because I really could feel my blood sugar. I knew when I was climbing, I knew when I was falling. I would check my blood sugar, I would meet my expectation. So I was like, what is this going to do for me, really? And I would have to navigate getting it covered with insurance, and I had just gone through that with insulin. It took me, like, two years to fight through the student insurance, and it was a complete nightmare. So I was just kind of not interested. But my partner is an engineer, and so he was visiting me, like, probably two months after this happened, and he's like, Oh, well, why don't you put it on? I've read a lot about them. They seem great. And I was like, No, I don't want to. So he made me watch a YouTube video of this girl putting one on, and it looked like feasible. So we did it, and I thought the needle stayed in your arm. So I freaked out. And I, after I put it on, I was like, oh my god, I can feel the needle. I can feel the needle. I don't like this. I want to take it off. And he's
Scott Benner 1:03:17
like, the needles in the thing here, I see it right here, in the insert. Yeah.
Amy 1:03:21
Like, oh, okay, okay, maybe it doesn't hurt as much as I thought. I kept it on and I liked it, and then the pandemic happened a couple months later. So I got a prescription, and I kept using them. And because I had so much time on my hands, I was at home working remotely, I could check my blood sugar like 45 times a day with this thing, and it didn't alert me when I was high or low, but I kind of already knew that anyway, so that was okay, but immediately I could see the value in it just for like, post meal things, timing of insulin. It was life changing.
Scott Benner 1:03:53
I sent Arden a graph last night. I texted her, I'm like, hey, you've got to do something about this. And she's like, I am and I just sent her a graph, and I was like, it's been like this for nine hours. Are you? And then I realized by her response, she didn't know that, like she had been having an issue and addressing it, and then going and living her life. She's in class, she was doing a bunch of things, then addressing it and then addressing it. But I knew what was wrong. Her site was old. Totally, it's just her boluses aren't working anymore. She's on an algorithm. So, like, the Bolus goes in, the basal goes away, the blood sugar doesn't move. And so I'm like, hey, just throw a Temp Basal. Like, I'm like, override the algorithm, put in a Temp Basal, and then her blood sugar starts to come down. And I was like, This is the site. The site's bad, and I just realized that until she saw the graph, that's not what she thought was happening. Like, does that make sense? Absolutely,
Amy 1:04:48
yeah. You can ignore it super easily, even if you, like, check in every once in a while. It's really easy, if you're busy with something, to just kind of turn that part of your brain
Scott Benner 1:04:57
off. Yeah, yeah. Almost like she was like, Oh, the you know. My blood sugar is higher than I want it to be. I fixed it, and then a couple of hours later go, oh, it's higher again. But, like, it wasn't higher again, it was higher still. She thought she'd taken care of it. And so I was like, Oh, this is super interesting. I'm learning more. Like people used to ask me, like, what's the podcast going to be about after Arden goes, you know, I'm like, All right, calm down. But like, now it's about me really trying to dig in and more understand the psychological aspects of having type one, yeah, because that's the only way left for me to help her, really, you know, on the management stuff, like she's she's very good at at this point, and I think actually settings she's going to need help with at some point. Yeah, I still think I help her, like, I'll say to her, like, Hey, I think you should bump this or bump that. She does it then, but I don't know that she would think to do it. Yeah. And the other day, she said to me, was she joking around about and she said, If I ever have a baby, I know Dad's gonna be in my life for a year again. And but she said it like, because I'm gonna need help with this. Yeah, in a nice way, yeah, no, it wasn't me. It wasn't at all, like, upsetting or anything like that. It was a lot like, I know that this is a thing and I'm gonna need help. I'm in a weird position because I, like, after you've explained your whole horrible life, that I get to tell you my weird position, I'm like, oh, when you hear my problems. But I'm in a unique position, where anybody who has kids or is a kid so everybody knows like you don't take your parents super seriously at some point. And I've noticed that it's awkward, not awkward. I'm gonna get the word wrong here. I'm just gonna say weird until I come up with a word. But it's weird to have type one diabetes and have your dad be the guy that countless other people would listen to about it. Does that make sense? Is it like, annoying? Probably, yeah. And I think the way we joke about in our house is to pretend like I'm an idiot. Yeah. Do you know what I mean? Like, oh, you know who's listening to people on the internet? And I'm like, I was, like, a lot of them. It's not four people I checked into it. You know what I mean, and so, like, there's that interesting, like, the answer is right here in front of me, but, oh, my parents are goofy. That's not who I'm gonna go to for this. But, man, he really would be the right person to ask. Yeah, you know what I mean, it's that kind of vibe.
Amy 1:07:18
And why do we hate it when our parents are right? But at the same time, you're like, Oh,
Scott Benner 1:07:22
I know I was interviewing a lady the other day, and she's like, when I realized I was like, my mom, she's like, it really threw me off. Like, how did you think all this worked? Yeah, and so then long way back, are you like your dad, or are you like somebody who you don't recognize because you didn't get to see your mom be an adult forever. I'm
Amy 1:07:41
like my mom, and I don't know it. I've been told I look like her. I don't see it in photos like I kind of see it, but everybody who knew her said I look exactly like her, and that my personality is more like her, especially at work, I'm able to be assertive and confident and really outgoing. And that's not my dad. He's very, very soft spoken and kind and gentle and quiet, and I obviously have that part of me too, but this other thing comes from somewhere that I don't recognize.
Scott Benner 1:08:11
So do you ever take a moment to think like this must be how my mom would have done this? Yeah, yeah, setting or comforting.
Amy 1:08:18
It's kind of just cool, I guess. Okay,
Scott Benner 1:08:22
do you avoid the gym? No, you
Amy 1:08:24
know what's so funny? My brother and I are both really, really big gym heads, like not crazy. He was for a while. He was very muscular, but he grew up as this tiny, little, scrawny, skinny kid. So that was kind of a funny transition to see also my baby brother. But I love the gym, and I love working out, and he loves being active too. And I think that comes from our mom, even if we don't really know why. Yeah, is
Scott Benner 1:08:48
there anything you can proactively do like to like, is an aneurysm just, is it a luck of the draw thing, or is it a thing they could be looking for for other people? Yeah.
Amy 1:08:57
So I am deep, deep, deep in the genetics world with my work, and so I find, like the genetics of autoimmunity, super, super interesting. But I've also considered the genetics of aneurysms. My brother and I have both had scans. So has my dad and my mom's dad right after she had her aneurysm, my dad, even though he's not genetically related to my mom. Let me just clarify that. And her father both had scans to make sure that they did not have any underlying like brain aneurysms that would burst, just because we can't be leaving these kids with even fewer people kind of kind of deal. And my grandpa, he did it to know if it was genetic, because sometimes it is okay. It didn't appear in him. So we had pretty good evidence that it wasn't genetic, and there was no family history at all. So again, really good evidence that it wasn't genetic. But when I was about maybe 20, my GP, who had been with me since birth, he knew my mom, he knew the whole story, suggested that I have a scan, and I was so terrified. Good. My dad went with me. They did contrast. And then I got the results three weeks later, and I was clear. Well,
Scott Benner 1:10:05
that's awesome. My brother has also been clear. Okay, it's not a thing you have to worry about. I'm I'm still why. I know you're going to work. I heard you. I heard I've been listening to you for an hour. I know you're worried about it, but is it you don't need to worry about? As far as they can tell,
Amy 1:10:20
it's a thing that I'm thinking less about. I think in a in a decade or so, I'll get another scan just to make sure nothing's popped up. But it's not top of mind.
Scott Benner 1:10:29
Okay, well, that's good. Do you do anything to try to worry less? Because, like, it's not lost on me, as I'm listening to you that I don't know a lot of ladies that are like, Oh, I'll have a baby, and then I'll probably worry less. I know, yeah,
Amy 1:10:46
not last on me either. Don't worry. You're
Scott Benner 1:10:47
incredibly like, introspective. Yeah, you seem to know yourself really well. I think it's because
Amy 1:10:54
I'm quiet. I'm more comfortable thinking than I am speaking, so I spend a lot of time just thinking. Did
Scott Benner 1:11:00
you find that comforting, or is it torturous?
Amy 1:11:03
It can be either, depending on the topic for sure, but I do think that it's helped a lot. Obviously, for stress, I work out I find that the most helpful also, just talking to therapy is really helpful. I don't have anybody right now that I'm seeing, but in the past, it's been extremely helpful. And I'm considering going back and talking to friends and sharing with friends and just being like, really radically open and honest with people is very helpful. Yeah,
Scott Benner 1:11:31
yeah. I agree. It's awesome. Is there anything we haven't talked about that we should have, or anything you feel like we missed? I
Amy 1:11:36
was really, actually hoping that we would spend the full hour talking about the genetics of autoimmunity, but that is okay.
Scott Benner 1:11:41
Seriously, yeah, how come you I was gonna say, How come you didn't speak up, but you told me why? Yeah, you're not gonna push me, huh?
Amy 1:11:50
That's not my style. Unfortunately, take
Scott Benner 1:11:53
five minutes and tell me top line, what do you wish?
Amy 1:11:56
No, no. Can I also just, I have this, like this thought that I've had in my head, not related to that at all. I'm listening. I love the podcast. And my favorite moment on the podcast, I just wanted to bring up, go ahead, you were talking about actresses, and who you thought your favorite actress was, and you said pregnant. Kate Winslet, yes, I just found that so funny. I laughed out loud, wherever I was, like, I have never laughed harder at a podcast, and then you went into, like, specifically, why? And I was just crying laughing. And I love the podcast because of how supportive it is for the community, but also because there's moments like that built into it. Oh, awesome.
Scott Benner 1:12:35
Yeah, I don't know. Like, I think pregnant ladies are hot.
Amy 1:12:41
Just really funny. Also, I would love to know your middle name. That's another like podcast, Lori
Scott Benner 1:12:45
yourself. I'm not telling you that.
Amy 1:12:48
And you know what's really funny? Actually, I've been mentioned on the podcast before, even though I've never spoken to you. How's that possible? So you talked to a girl who her name was Morgan. She was from interior BC, and she had a really unsupportive family. She was on the podcast like itself, maybe a couple months ago, so you probably talked to her, like, a year ago. But she was working, and my boyfriend went into the store where she was working to buy a battery, and he noticed her CGM, and she said, like, something about diabetes, because he's not shy at all. And he said, Oh, my girlfriend has diabetes. She's in the car. She should come in and talk to you. And she was kind of like, okay, whatever. Then he came out to tell me that, and I was like, Oh, my God. Like, what did
Scott Benner 1:13:30
you do? I gotta go talk to the girl at the store where we got the bat. All right. Hold on, yeah. Like,
Amy 1:13:34
really. Okay, fine. So I did. And then she ended up on your podcast, because I told her about your podcast and about, I guess, a book, sugar surfing. Yeah, that's so funny. So
Scott Benner 1:13:45
why, while you're being forced to chat with this girl by your boyfriend, which, by the way, I wish we did have a lot more time, because I feel like it's super interesting that you went with an engineering guy after your dad. Wasn't very emotional, but it just felt like a weird road to go down. I didn't want to split up your relationship. No, no, that's all good. He drags you in, out of the car. Was it cold? Was it one of those, like, it
Amy 1:14:05
was summer, it was hot, it was warm, but I was still like, are you serious? So now you're back
Scott Benner 1:14:09
in there. You're PLA, you're like, Oh, all right. Now you're acting because you don't want to do this, but you just, you have no ability to tell anybody, no, you're doing that, having the conversation. You tell her about the podcast, about sugar surfing. She ends up on the podcast. Then tells that story. It
Amy 1:14:22
was so crazy. I didn't know at first who she was exactly, and then she was like, oh, talking about where she lives. I'm like, oh, that sounds really familiar. And then she told that story. And I was like, No way.
Scott Benner 1:14:31
That's crazy awesome. A little full circle thing here that gave me the same good feeling as when one lady told me one time she was walking into Costco and saw another person wearing a good Juicebox Podcast t shirt, and they, like, looked at each other and started talking. They both listened to the podcast because it's so niche. Do you know what I mean? Like, that's what makes it crazy. Listen. There's millions of podcasts that are registered, but probably only about 800,000 that actually put out an episode at least once a month, and of the. 800,000 you guys have heard me say this before. Like, 86% of them don't even do enough downloads to, like, sell an inexpensive add on. So, like, like, my point is that there's maybe 850,000 podcasts you've probably heard of about 200,000 of them. Is my point that one of them is about like, type one diabetes, and that people bump into each other and are like, hey, hey, and then end up listening like being listeners. That's really freaks me out.
Amy 1:15:26
I know, yeah, that freaked me out a little bit too when I heard her on the podcast, but it also was a nice feeling. Yeah, she's
Scott Benner 1:15:32
talking, and you're like, oh my god, this is me. She's talking about. Look at me, bringing people together.
Amy 1:15:39
And this is also not related to autoimmunity, just, I guess the only thing I'll say about that is that it's really interesting. There's a lot of genetic underpinnings, and all the autoimmune diseases go together, and it's really cool. And they, they tend to predominantly affect women. And I could speak for hours and hours about that. But
Scott Benner 1:15:53
does anyone else hear Amy setting herself up to be invited back on the podcast? Is that what you're doing right now?
Amy 1:15:59
I'm not, I'm not honestly, but I just, I think it's so interesting. And every time you bring it up, I'm like, I wish I could scream through the headphones the answer to some of the things.
Scott Benner 1:16:09
But Amy, you should be pushing me to do that. You should be like, Hey, you should really consider having me back on to just talk about
Amy 1:16:15
that. Well, I'm happy to if you want to, but I also respect the structure
Scott Benner 1:16:20
say it
Amy 1:16:24
thought you should have me back on the podcast. I know so much about genetics, it would make your brain spin. I think
Scott Benner 1:16:29
you're right, actually, and I'm sorry that I didn't realize that and put that all together, although, in fairness to me, dead mom, one hand diabetes, you cut. I mean, you you had to know which way this was going, didn't you
Amy 1:16:41
No, but do you know what? When I first was like, Maybe I should reach out. I was like, why would anybody want to hear from me? I'm just seriously diabetic person, yeah,
Scott Benner 1:16:48
oh my god, if you just would have sent an email that said, dead mom, one hand diabetes, I would have recorded with you the next day.
Amy 1:16:56
And I think I rescheduled twice, because the first time I was defending my PhD the day after we were supposed to record, and I was like, I can't do that, yeah. And then the second time, my grandpa had died the day before, and I was like, I also can't do that, so I finally made it.
Scott Benner 1:17:11
Oh, it's awesome. There's been times where people haven't shown up, and I'm like, I'll send a note. And they're like, I'm in the hospital, yeah, literally, I had to go to the hospital this morning. And I'm like, Oh, okay. Like, never. It's one of the things you don't think about making a podcast with people who have health issues, but that's happened more than once, as crazy as that sounds, all right. No, listen, you should definitely come back on. First of all, you're good at this. Thank you very conversational, which is awesome. You have a great sense of humor. I mean, I've just three times in a row to test you said, dead mom, one hand diabetes. You did not flinch. Just give me one example of something you hear that you want to articulate. Like,
Amy 1:17:51
people always say, oh, type one, that's the genetic kind, or you get it from birth, right? And like, kind of yes to both of those questions, but also kind of No. And the intricacies are huge. There's tons. And also the things that like go together different autoimmune diseases like hypothyroidism and celiac disease. There's a reason for that genetically, and
Scott Benner 1:18:11
you can explain that absolutely, colloquially, so people can understand
Amy 1:18:16
it. That is my specialty. I love teaching. I did so many teaching positions in grad school, and I always got told that I was a good teacher, so I would love to try. I'm not. This is like the one time that I will put myself up a tiny bit, because usually I'm very self deprecating. But I do actually think that I can do this, especially if you have questions like, ask me anything about genetics, and I also studied pregnancy. So anything about pregnancy, and like pregnancy genetics, because that's the whole thing too. The fact that women get pregnant probably pre disposes them biologically to developing more autoimmune conditions. There's a whole, like, school of thought out there about that, and I would freaking love
Scott Benner 1:18:53
to talk about, I don't think you guys are meant to live more than, like, 20 years. We're
Amy 1:18:57
not, and we're supposed to be pregnant every year of that 20 years. And if you're not, it's like a problem. And then
Scott Benner 1:19:02
just problem, and then just fall over and die. Yeah, no, listen. So first of all, make a list and send it to me. Okay, like, seriously, I already have a list. Send me the list. We'll get you back on to record. And it's funny, because right before we started talking, I was looking at, I know, I say chameleon, like, there's one here, but there's more than one. I know I have this one that's from Yemen. And because of the weather there, they're genetically built to grow quickly, because they have to be born, mate, lay eggs before the weather kills them. In the wild, they don't live a full year. That's crazy, right? And
Amy 1:19:46
in your house, they live seven
Scott Benner 1:19:48
years, eight years, wow. And so I look at her all the time, and I think she'd be dead in the wild, yeah. And then it makes me think about before 1920 my. Daughter would have died. Like, I know, like, Isn't that crazy? Like, but that's like, my brain jumps around like that, like, but I look at her and I think this chameleon is, like, over there living its life. Like, trust me, she's looking at me right now. Like, if you could just bring a roach over here, it'd be awesome. She's a little fatty right now. I just want to say, and not like, in the P, H, A T, way, where you just, like, look at that thing shake. Like, she's getting a little belly and like, so like, we got to do something about that she would have died a few months ago. There's this one little valley where there's enough rain that these things can live. And that's what it made me think about when you just talked about genetics. Totally. How crazy is it that we tell women, when women have problems with their their inside bits and they're young, what do doctors tell them all the time? A lot of this will probably clear up
Amy 1:20:44
when you have a baby, yeah? Or when you're older, we don't know, yeah, go away.
Scott Benner 1:20:48
Yeah, hormones, right? And, but we can talk about all that,
Amy 1:20:51
yeah? And the fact that the world is so clean right now means everybody's getting more autoimmune diseases because we're not fighting viruses. We're fighting
Scott Benner 1:21:00
ourselves. Oh, we should be rolling in the dirt.
Amy 1:21:02
Yeah, we should be, like, licking dogs, basically. Well, let's try to find
Scott Benner 1:21:06
a different way to put that, but sure, yeah. I mean, you're so Canadian, you're just like, Please lick a dog. It's not a big deal, all right. Amy, you're in you did it. You stuck up for yourself, and you got something.
Amy 1:21:18
If you change your mind, let me know. I'm, Are you fcking
Scott Benner 1:21:21
serious? Amy, why didn't you just go, Hey, I'm sorry for doing that.
Amy 1:21:29
I'm so sorry. A like, we can cancel this that doesn't work for you. Just let me know.
Scott Benner 1:21:32
No, I think it's an awesome idea. So okay, hold on one second for me.
You I'd like to thank the blood glucose meter that my daughter carries. The contour next gen blood glucose meter. Learn more and get started today at contour, next.com/juicebox and don't forget, you may be paying more through your insurance right now for the meter you have, then you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now, and links at Juicebox podcast.com, to contour and all of the sponsors. This episode of The Juicebox Podcast was sponsored by us Med, us. Med.com/juicebox, or call 888-721-1514, get started today with us. Med, links in the show notes. Links at Juicebox podcast.com, the episode you just enjoyed was sponsored by the twist a ID system powered by tide pool. If you want a commercially available insulin pump with twist loop that offers unmatched personalization and precision for peace of mind, you want twist, twist.com/juicebox, thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? Hey, what's up, everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording, doing his magic to these files. So if you want him to do his magic to you, wrong way recording.com. You got a podcast. You want somebody to edit it. You want rob you.
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