#250 Everything Doesn't Have To Be Perfect
Scott Benner
1 + 1 = Turtle…
Karly has type 1 diabetes and she is on the show to hare her perspective on parenting a child with type 1, eating disorders and hypoglycemia.
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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 everyone and welcome to Episode 250 of the Juicebox Podcast. Today's episode is sponsored by Omni pod dancing for diabetes and Dexcom. You can go to dancing the number four diabetes.com dexcom.com forward slash juice box, or my omnipod.com. forward slash juice box to find out more.
Welcome back everyone today on the program, Carly, Carly has had Type One Diabetes since she was a child. She's on the program today to talk about a number of different things an eating disorder, how it develops, and how she got past it. The role her parents played in her diabetes care. Some of the organizations that she reached out to as an adult hypoglycemia study she's involved in, I came super close to calling this episode one plus one equals turtle. But instead, I present to you everything doesn't have to be perfect. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And to always consult a physician before becoming bold with insulin or making any changes to your health care plan. One last thing, I listened to the emails and the messages and there are t shirts available again, just go to Juicebox podcast.com. scroll down, you'll see a big image that says merge on the front. When you get to that link. You'll see the new podcast logo with Be bold on the back. A t shirt that says stop the arrows, one that says bold with insulin. mugs, flip flops, bags, stickers, there's so much to choose from.
Carly 1:47
Hi, my name is Carly. And I'm from Minnesota and I'm a 23 year old guy but it goes 15 years.
Scott Benner 1:56
Okay, so 23 you're still in college?
Carly 1:59
Um, no, I actually graduated in May just got done.
Scott Benner 2:03
Okay. And for 15 years, so since you were How old?
Unknown Speaker 2:07
Um, the math on that seven? Seven, I think
Scott Benner 2:12
I was trying to get out of doing the math, I thought you would just know. So you're diagnosed at seven years old? And is this something that your parents were involved in most of the time?
Carly 2:23
Um, initially, yes. When I was seven, they did most of the taking care. And then I would say probably once I started giving myself my own shots when I was like 12, it kind of just got handed mostly off to me.
Scott Benner 2:40
So from seven to 12 and beyond, tell me a little bit about what the idea of managing a day looked like to you. Like, were you trying to keep your blood sugar at 85? Were you trying to keep it anywhere? Was it all over the place? Did you not track it that tightly? What kind of technology were using? Give me a big overview of of what your day was like?
Carly 3:01
Yeah, so when I was on when I was first diagnosed, it was kind of like yesterday, it was within 80 to 180. And first of all, I was terrified of influence shots, and I would not do them myself when I was first diagnosed. So I would I didn't want insulin at all at all. So I would do the long acting in the morning. And then as obviously fast acting in the morning, too. And I'm not really exactly sure how it works to be honest, because I didn't get insulin shots at school at all, but I was still able to eat lunch. So I think and I would take my blood sugar and be you know, within 80 to 180. And if I wasn't my mom would come give me a correction.
Scott Benner 3:44
Dancing for diabetes, calm dancing, the number for diabetes.com
Carly 3:53
when I got home at the end of the day was still no blood sugar. So to be honest, I don't really know exactly what insulin I was on that allowed me to do that. As far
Scott Benner 4:00
as you were saying that does it start sounding screwy to you? Because, yeah. And it's funny how at the time you were just like this is what we're doing. So you didn't want to give yourself an injection at that age and there was no one at school to do it or you didn't even want anybody at school to do it.
Carly 4:16
I would only let my mom do it. So I didn't want anyone at school doing it. And I think I was also still honeymooning and i i know i honeymooned for quite a while because I did not have a whole lot of insulin for the first probably two years of diagnosis.
Unknown Speaker 4:30
Okay,
Carly 4:31
so maybe that was after that couldn't watch my home under school though. I didn't get shots that fulfil, yeah, I must have just been on my probably high after lunch and just I got home and I was fine.
Scott Benner 4:42
And if you got over 180 your mom would make the trip to the school and she would inject for you.
Carly 4:47
Yeah, usually. Yeah.
Scott Benner 4:48
Did that happen frequently in your memory?
Unknown Speaker 4:51
No, not really.
Scott Benner 4:53
Alright, so I don't think we're ever gonna really know how it is you got through your days. Excellent. Yeah, I know. That's interesting. Right,
Carly 5:00
I should really ask, I should really ask. I don't know how I just know that that's how it was. And I, until middle school, I never even gave myself shots at schools. Oh, yeah.
Scott Benner 5:09
No kidding. And so and now when you turn 12 Did you just magically one day, say to yourself, I can do this now.
Carly 5:18
Kind of it was more, I wanted to go to sleep overs and not have to have my mom come and give myself insulin. I remember the first few times I had sleepovers, I would, he would come and give me you know, come super early in the morning, and then come super late at night and give me and give me insulin for whatever snacks I was having and stuff.
But after, you know, after a couple times that I was like, I want to kind of figure this out. So then I, then I did and that's, that's when that started. So necessity was the mother of your invention, you were just like, Look,
Scott Benner 5:49
I don't need my mom showing up at these like social events anymore. So I'm gonna, I'm gonna figure out this needle thing. Yes, that's,
Carly 5:57
that's what I that's what I did. And, um, I was terrified of this stabbing myself in the arm was just, like, normal injection needle. So we had this thing called a shot ease. It was like, you put the needle into the bodies, and then you just click it, and then it releases the needle without you having to stab yourself.
Scott Benner 6:14
So I've heard of that a little bit, but I've never seen one and you but you had. So there was there's a huge phobia going on for you then. Yes. And do you feel that way now?
Carly 6:27
Actually, because I have, obviously my insulin pump. But um, so Medtronic, but I, the other day at work, my insulin pump came disconnected. And I had nothing with me, because I just wasn't thinking when I left the house, so I had nothing with me. And I luckily work at a hospital. And so one of the nurses was like, we'll use the use the little vial and your insulin pump and then use one of these needles and drop some insulin and just give yourself some insulin and just kind of keep doing that until you can go home because I was halfway through my shift. Not a good idea. Except for I hate needles. So I was like, Can you give me the shot? And she was like, yeah, that's fine. But that's weird that you can't give it to yourself. I was like, Yeah, I haven't done this in like 10 years, probably.
Scott Benner 7:07
So I have a couple of thoughts around that. But first, I have to ask you, what sort of work do you do at the hospital?
Carly 7:12
I am a nursing aide. I graduated with a degree in biology and I want to go to physician assistant school.
Unknown Speaker 7:17
Okay.
Carly 7:19
So yes, so right now I'm just trying to get direct patient care hours, and I'm working as a nursing aide, are you
Scott Benner 7:23
able to give other people injections?
Carly 7:27
No, we are able to do a lot of blood sugar checks, but I'm not able to give them and
Scott Benner 7:32
so the rules don't allow you to if the rules allowed you to do you feel like you could do it?
Carly 7:37
Yeah, definitely. I have. I mean, I have gone to diabetes camp and had to give kids shots and I can do to other people. It's just myself. I just I don't know,
Scott Benner 7:46
no, no, don't don't be I first of all, don't apologize or be embarrassed because, um, trust me, I'm getting to this for a reason. So and so when so when the nurse or somebody who helped you at work that day, did it? It didn't hurt, right?
Unknown Speaker 8:00
No, not at all.
Scott Benner 8:00
And so and you know, cognitively that if you did it, it would have heard either, yes, but there's just something between that thought and the action of doing it. You really are like, like stopped by it's so interesting. How are you with putting your pump on?
Carly 8:16
That I'm perfectly fine with too, because it's like, I just press a button. And I still, I think it's the sight of seeing the needle go into. I don't know why it freaks me out.
Scott Benner 8:26
But it does. Have you tried turning your head and not looking? I have not done that. Close your eyes just like like swing in the direction. If you're fine. See what happens. I think I could do it. I think there's a game to be made of figuring out how you're able to do this on your own because it sounds to me. Right? It sounds to me that you are able to do it. There's just whatever the sticking thing is for you. Maybe it's visual, like you're saying.
Unknown Speaker 8:52
Yes, that could be I guess
Scott Benner 8:55
this is great. I so Arden doesn't I don't think Arden's ever given herself an injection. Okay, I honestly don't. And I you know, to say that we haven't used them in a really long time is you know, since she was four, probably with any consistency. But I don't think like when she was four, maybe she did it a few times. But I don't think if I handed her a needle right now, and I was like, hey, do this. I don't think she'd be like, yeah, right on no problem. You know, yeah, definitely. She can manage your pump, fine. Take your pump on and off. And you know, and do all that there's, there's no problem with that at all.
Carly 9:30
I think it's kind of a mind game. like doing it to yourself, at least like doing it to other people. It's easier, but to yourself. It's just a mind game.
Scott Benner 9:38
What do you think about like, like, so your mom was like, Look, I'll come to the school and do this for you. Do you think that if she was just like, Listen, I'm not coming to the school. You're gonna go into a nurse's office and do this. Do you think you think you would have done that? Have you thought Do you feel like you would have been like, Oh, honey, you're not winning this game. I'm out there. Just send me home. Or you roared head on I guess is my Question.
Carly 10:02
I was stubborn when it came to diabetes stuff. So I would probably have just cry, then she would have been like, okay, I'll come do it.
Scott Benner 10:08
See is I hear you? Yeah, I don't know, when my kids cry, just like, look at them. And I'm like, oh, you're gonna stop, right? Like, this is SCADA, this has got to end. I don't want to be a part of this. Okay, so I just wanted to go through that a little bit, because I'm sure there's a lot of people who feel that way. And I'm sure there are people who have given, you know, injections for people and, you know, asking for people to do it. They don't want to or feel like they can't, I don't think there's any shame in it. Obviously, you're managing, you know, just as well. No, no, in your note to me, you said that around 12 years old, your parents sort of passed off the care like you, you learned how to inject like you've just gone over, but then that sort of took them out of the loop. So you were now making insulin decisions when you were 12?
Carly 10:53
Yes, basically, um, I would say, maybe not right, when I was 12, was I making the decisions in terms of, like, how much to give myself I would still probably ask, and I wasn't the best at counting carbs, quote, unquote, but um, I. So I think, initially, I was just kind of they would, you know, my mom would dose them for me, and then I would get them to myself on but probably probably, like, as soon as for sure High School is when I did make all my insulin decisions, especially because around 13, I got an insulin pump. So that's when I started really making all my decisions.
Scott Benner 11:27
Okay. And so, you know, we're, I don't for burying the lede here or not. So you've at some point in your life developed an eating disorder around diabetes?
Carly 11:38
Yes, um, I would say High School is one that started. And I didn't really even know it was an eating disorder. When I first start when it first started, like, I just kind of, I don't, I guess, like, there's no really pinpoint to confirm that started. But, you know, I've just started putting two and two together that I wasn't giving myself a lot of insulin in my blood sugar's are always high and losing weight. And then it just kind of, yeah, I just kind of went into a downhill spiral after that, when I actually started realizing what I was doing. And then into college continued until probably my second year of college. But being a bio major, he kind of, well, it's not that I didn't realize before, but being a bio major, especially you realize how bad it is for your body and how much I wanted to make a change and to be healthy around diabetes. Okay, so let's
Scott Benner 12:29
kind of if you don't mind, like, unpack that a little bit and go through it. So in the beginning, it was just, if I left my blood sugar higher, I'd lose weight. That is that was that the the starting point?
Carly 12:44
Yes, I think, um, I think that and also, there was also a part of it, too, that I was also very active, I was on track and in the in depth team, and I didn't want to, I didn't want to go low. I didn't want to have to go low and be not a part of that. So keeping my blood sugar a little bit higher, I was able to, obviously not go low on and so initially, it wasn't, I was always 400 it was initially I was just kind of, you know, floating in the sky. 100 200 and being being okay. But it wasn't, I guess, I guess, later on, it started being you know, it would be more higher in the four hundreds and it got even worse. Okay.
Scott Benner 13:25
Did you were you not eating? Were you not eating because of this? Or were you eating? More? Like, what how did the what was that piece of it? Like?
Carly 13:37
I think at the beginning, when I again, wasn't really realizing what I was doing was making me lose weight. I was kind of not eating as much that was more the classic eating disorder symptoms of like, more anorexic, just not, not, not eating a lot at all. But then once I started realizing that Oh, I just don't take influence, but I can eat things and it started being I would eat whatever I wanted to I just have really high blood sugars. So I guess it was a little bit of both.
Scott Benner 14:05
Did you? Did you find yourself in DK ever.
Carly 14:10
I was just talking to a friend about this the other day, I do not know how I was never NDK like I probably wasn't BK but I never was. I never was sick enough that I actually went into the hospital. Okay, so I don't know how I never Yeah, never ended up being super sick.
Scott Benner 14:27
And then and then tell me to when you go to your endo appointments. I'm assuming you are going to reasonably regular endo appointments, right?
Carly 14:35
No. Okay. No, yeah, that's Yeah, as soon as my parent my parents, my parents are lovely people, but they but they were not pressuring me in terms of diabetes at all. And so I would go on what kind of I would not go regularly at all. And when I would go it would be very I'd be very defensive and my endo you know, kind of knew something was up like obviously I have you know, 13 a one see there's something up on. And at first, my first endo kind of passed it off as cheese, you know, noncompliant to the teenager, you know, she didn't need to do better controls, let's just try this whole thing a little bit for these meals or whatever, let's just try it. I don't think he was understanding that I had an eating disorder at all. But then I went to a second barrel because my insurance changed. So I had to go to switch to different, different No, basically, um, and she knew what was going on, totally figured me out and kind of told my parents and, or my dad, at least while he was there, you know about possibly that I had any disorder. And I was just totally rebellious against it. I do not. And I reached out. And then after that, I don't think I went to an endocrinologist for two or three more years. Okay, because I just didn't, I didn't want to face it. Okay, Carly,
Scott Benner 15:52
you're so you're saying a lot here. So first of all, I want to thank you, because there have been hundreds of people on the show, but only a handful of them ever have to dig into stuff like this. And these are really valuable conversations, and you're brave to have it with me. So So first of all, thank you very much.
Carly 16:11
Yes, it's definitely a very important thing to talk about.
Scott Benner 16:14
No, absolutely. It seems like there was a couple of components here, right? The first one was that your parents weren't exactly dealing with you like, hey, look, this is something we do every three months, we go to the doctor, you get some sort of a, whatever the doctor does, they make, you know, adjustments or suggestions, and we're gonna keep doing this, that that just wasn't just wasn't part of your life. And I'm sure it's not part of a lot of people's lives. To be perfectly honest. Yeah,
Unknown Speaker 16:43
right. Yeah,
Carly 16:44
I was just very, I'm very defensive about about the whole thing. In general, I think my parents just kind of like, well, because I'm not, I'm not a defensive person in any other ways. In my life. I'm very, um, I'm just not that kind of person. Um, so when I started being super defensive, and just kind of angry about the whole thing, they just kind of stepped back and were like, Whoa, like, I'm sorry. Like, we'll let you handle this. Like,
Scott Benner 17:04
yeah, so there's this. If I've mentioned this before, I apologize. But it fits so well, here. I spoke at a hospital in the recent past. And, and endocrinologist, nurse practitioners came up to me afterwards, because I had mentioned how I'm involved with gardens care. And they thanked me when it was over, saying that it was very important for the parents in the room to hear that because a lot of parents think that this is just something they don't need to be involved in. Or sometimes they don't want to be or for whatever reason, they distance themselves from the care and leave it on children who are quite honestly too young to really, you know, understand that. Yeah,
Carly 17:48
definitely. This is definitely both perspectives, like, like parents, like, I think as I go to diabetes camp, so I see the parents that are very like, on top of it, and then the other parents are kind of like, oh, it'll be okay, it'll be fine. And some of them, some of them are, whether they're responsible, but then some of them aren't. And it just like, I want to help them and be like, you know, just try to mentor them while they're there. Because I know that they when they go home, I don't want them to end up like I did not have not have as much guidance, which is unfortunate, right? Because somebody said that about you? Oh, she'll be fine. And you weren't fine. And exactly, and what you know, you're only I don't want to say only 23 but you're only 23. You know, you don't have children, you haven't been out in the in the world in the fight yet. You know, so yeah.
Scott Benner 18:32
Right. So so you're you may know this through your experience now, or, or maybe don't have the perspective yet. But there are always going to be parenting moments, when it's not easy. It's not fun, and their kids hate it. And you still have to, you still have to be there and do that thing with them. And and there's, you know, obviously there are things that kids can avoid when they're in their own time if they're at school. You know, we're talking about diabetes, but this could be anything you could be telling your kid Look, don't smoke a jewel, and the kid still sneaks away and does what they're going to do. But I think that every time you see that jewel, you still have to be the person who takes it from them and then put some sort of a consequence in order and and work through it. It's it becomes touchy and scary when it's about a health thing, you know?
Carly 19:20
Exactly. Yes. And I think I'm also parents just, I guess from my perspective, my parents just didn't want to don't want to hurt me, but they didn't realize in the long run that's not helping for anymore. They were just trading easier now for worse later. Exactly.
Scott Benner 19:37
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Carly 21:40
I think they kind of realized what was going on. So I think I needed someone to just come alongside me and just say hey, like I know that you know you're defensive about this. But I think that you if you don't want help from us, we need to bring you to another chronologist or we need to find another another key Wendy, that's your age that you can talk to her someone because I literally had nothing. So just to have that support would be really helpful. And I'm and I'm not blaming them at all, like for sure. Like they, they didn't know what to do. Like, I'm also their only child, but like, it's not like they've had practices before. And so yeah, so I think just taking along, going alongside a kid guidance, and just letting them know that you know you're there for them. Or they can help you find resources.
Scott Benner 22:26
But that could help them. Yeah, they didn't have a practice kid them when they could just mess up and go, Hey, that was our first one. This is not our fault. You are the practice kid. So yeah, look what they figured out from practice, no more playing. I hear him. Okay, so something, try something, try anything, do something. If that doesn't work, do something else. But don't give up. And I think the message for parents needs to be that. Just because kids push back doesn't necessarily mean they don't want you there. There might be other reasons why they're pushing back too. And for you. You know, it could have been anything, it could have been your fear of needles, it could have been that you just didn't want to have diabetes, you know?
Carly 23:08
Exactly. Yeah. And I think for me, it was it was I think it was perfectionism. You know, I want perfection and diabetes, well not perfection. So if I just ignored it, and it wasn't, it wasn't there. And I could just continue living my life and being perfect in other aspects like not going law at dance practice or not going low when I'm trying to study for a test or whatever.
Scott Benner 23:27
How do you end up working your way through something like an eating disorder? And is there are there things that parents can look for in their kids that are kind of hints that something like that's going on besides the elevated blood sugars ne one sees it seemed crazy out of whack and stuff like that?
Carly 23:45
Yeah, I think um, well, first are things that you can look for. I think I'm just not you know, I guess avoiding avoiding food or having specific, specific things that they want to eat. I guess our classic eating disorder signs, also kind of being I guess, depressed around depressed in general, I've obviously teenagers can be anxiety and depression, but I think especially around like diabetes and eating. And for me specifically how I worked through it, I took me a long time to really realize that, like I said that I even really had an eating disorder. And then after I did, it took me a long time to figure out how to solve it. I didn't I didn't go through classic like treatment going to a treatment facility. I going back I wish I would have been in college. I was just like, I'm too busy to figure this out myself. And so what really helped me was on I, first of all becoming involved with the college diabetes network. I found our chapter at our at the University of Minnesota and kind of came affiliated with them and then ended up going on a retreat. They have like a leadership retreat every year where they have leaders from chapters around the country. Me too. And for a week, you kind of get to be with all these key windy leaders and learn about, about new technology, learn about things that you can take back to your chapter. And that week kind of changed my life. I'm actually that was two years ago now, yeah, two years ago in May. And we still have an active group Snapchat that we literally every day is always blowing up with people, you know, sending each other grass with their Dexcom, or whatever you're talking about general things that we're frustrated with. And just having that connection, even though they're not obviously living in Minnesota, having that connection of people, and constantly talking to them, and seeing how they're keeping track of their diabetes really helped me. And also, aside from that I learned of an organization called we are diabetes that is focused on specifically type one diabetes and eating disorders. And the founder of that I kind of came in connection with and she came alongside me and kind of mentored me a little bit too. So I think just having in general, the seven connections to diabetes things and being around people that are keeping good track of the diabetes really helped me community, right, just hearing, having knowing someone else's, they're being able to bounce something off of somebody showing somebody something that's not perfect. And then going Oh, yeah, that
Scott Benner 26:17
happens to me too. And, and that feeling that everything doesn't have to be perfect, right?
Carly 26:23
Yes, yes.
Scott Benner 26:24
Were you like, are you were you like that? In your personality about other things? Or did that idea of perfection, just live in the diabetes space for you?
Carly 26:35
Oh, definitely about other things, too, about school about any sport I participated in. And, yeah, I'm very perfectionist, which has its good qualities, but also it's bad quality.
Scott Benner 26:48
I know, I might be married to a person like you, I understand what's going on. So a lot of a lot of this isn't quite right. Not quite good enough, like that sort of thing. Does that come? Do you think it was a learned behavior? Did somebody show you how to be like that? Or do you think that it's just sort of hardwired?
Carly 27:05
I don't really, I guess, I don't really know. Because my dad is most easygoing, like fun person in the world, like, everything's a joke to him. And then my mom's not a perfectionist, either. She's not as easygoing as my dad, but she's definitely not. not expecting us to be hardwired from past past relatives or something. Yeah.
Scott Benner 27:25
I was just wondering, it's interesting, because I know for my wife, it's, it's a family trait. You know, like, it's definitely something that, you know, is in the genes. And so I was just wondering, but that's, that's super interesting. Okay. So you, you get yourself on a better path. And you do that through it sounds like through community and support and everything, which is, which is fantastic. Did you have any lasting medical effects from the disorder? And is it something you still fight with today? You know, what is maintenance look like?
Carly 28:02
Yeah, I actually did not have any lot lasting well, aside from my vision, you know, I had 2020 vision before this all happened. And I have glasses now. But that could have been from that could be from not having good diabetes care, or just other things in general. So and it's not like I have terrible vision, I just have to wear glasses on but other than that, I really have no, no residue effects from it. And it's definitely still, it's still present. I'm not like anything like it was but I would say, um, in terms of like fear going low overnight, like, which I don't know, it's not necessarily an eating disorder thing anymore. It's just that I'm so used to not going low overnight that like, I freak out. When I go to bed below 120 I would say like, I'm like, I need to eat something before I go to bed because I don't want to wake up low. And I think that's just because for years and years, I've reduced to that. It's definitely become much better. And I was actually listening to your podcast as helped a lot because this summer on every time I would go out for a walk or whatever, I would listen to your podcast and listening to other people kind of had the same issue where they don't want to bump a nudge and go a little bit have their blood sugar's went a little bit lower on kind of inspired me.
Scott Benner 29:16
Good. I'm good. That's excellent. So hearing other people's stories got you kind of like revved up, but you're and how did you put that into? Like, once you had that momentum, and you were feeling like, Hey, I would like to do something more like what I'm hearing about other people saying, What's the first step to that? It's got to be the overnight stuff, right? Like that's got to be your biggest fear, I would imagine because you do live by yourself.
Carly 29:39
I don't right now I did when I was in college, but now I live back with my parents until until I find another place.
Scott Benner 29:48
No place. I would stay there as long as I could. If I wish you I would. I would. I'm all for someone paying my rent and still if someone wants to show up and do it. So don't don't rush around for that plus you sound like you have bigger plans. So just you know, as long as they think you're moving towards something, I'm sure they'll leave you alone.
Carly 30:05
Yes, I would like to, I would like to move out, but I will take advantage as long as I can
Scott Benner 30:11
for you. Plus, you're in Minnesota. I mean, most half of the year can even go outside anyway. What's the difference? It's just like, like a meat locker.
Carly 30:20
Coal kind of Yeah. Today, it's made in the 20 degree melvil? I think so it's kind of warm outside, but it's 20
Scott Benner 30:26
degrees. Listen to what she just said. It's 20 degrees. It's kind of you live in a place where you can walk on a lake, just let's stop. Okay. It's not natural. But But seriously, I escaped. Yeah, no, please. I was my brother lives in Wisconsin. told me when he moved there, because he, you know, he's from where we're from. And he's like, Guys I work with invited me to go ice fishing. And I was like, What is that? He explained it to me, and I'm like, are you gonna do it? He goes, I don't know. I don't know how I can't like we all work together. He went one time. He's like, it was insane. Yeah, he's like, he's like, they lit a fire on the top of the lake. And I was like, right, because it just burned. Nothing happened. It's like nine feet of it. It's like, come home. Boy.
Carly 31:12
I can see how that could seem really weird to someone that's never done that before. Yeah,
Scott Benner 31:15
you're done. Right? It is. But so so when you make so let me I guess let me ask you this. Prior to coming out of high school, and you're in you know, you're come to college, and you find the college diabetes network, and you find yourself some stability. Where are you at? Like a one c? You know, average blood sugar wise in college? Like, what were your goals? Like day to day goals? And how did they end up? Like kind of grading out? I guess, at the end of the three months? Although someone's gonna get really mad that I said grading out, but it's a term just Well, I'll be fine.
Carly 31:50
Yeah, so I think the first first year of college, I definitely didn't go the endo at all. So I don't know what it was, it was probably still 1213 second year of college, it started when I'm actually kind of certain, trying to figure stuff out. So um, when I went and I think the first time it was like, 9.6, or something like that. And then recently, I guess, a third year of college in the fourth year of college, I got it down into eight. And then last time I went in, it was seven, which was at the beginning, or when I got back from Vanderbilt. So that was like, I guess, the end of the summer. So I'm going in next month, so
Scott Benner 32:28
So yeah, absolutely go, that's you should be incredibly proud of yourself. I'm sure you are. But you don't need me to tell you that. But. But that's a really amazing accomplishment in a very short amount of time on your own. Coming from where you came. That's, that's spectacular. And you don't shy away from food. And you don't you don't overeat to avoid lows and all that sort of going.
Carly 32:50
Yeah, yeah, I definitely am someone that since I do kind of diaper infection, I do kind of eat only regimens that are not right to certain things, because I know how to bowls for them. But I definitely expanding my horizons in terms of figuring out how to bowl for other things for you.
Scott Benner 33:05
Well, this is very exciting. Now listen, I think it's important to say to people listening that I think Carly's story is shocking, like if you don't live this life, or if these things have never kind of, you know, crept up in your life. I would see we're hearing them might be like, wow, that's insane. But I don't think that your story. Is that uncommon? Carly? You know, yeah, I don't at all. And have you met other people who were in a similar situation? I know, I don't know if you have or not, but I'm just interested in like a diabetes camp.
Carly 33:36
Well, it's kind of interesting, because I have not like, specifically met I've like, through we are diabetes, like I've talked to like the founder who had eating disorder. And I was, I guess, that multiple people have default diabetes network that, that kind of went through disorder phase, but not like, not extreme. But it is interesting, because I do work at the hospital. And I see so many people that are around, you know, between the ages of 18 and 25. that come in with aka. And obviously, not all of them have eating disorders, but a lot of them are not. Some of them, you can kind of just tell do and I just want to like I know, as my position, I can't step up and be like, hey, like, I want to help you. But I'm interesting that I can't say anything, but I do see a lot of people at the hospital that um, that are going through that same thing. So it kind of makes me realize that Yeah, my story is not there. A lot of people are going through this
Scott Benner 34:29
right. And I think that that goes for most people like whatever it is that your story is around diabetes, it is probably not so dissimilar from other people. And it just, I think we I somebody put it to me, I'm trying to figure out a way to say something, somebody put something to me one way recently that I didn't know 100% with the makeup, but they they said I would bet that people who listen to your podcasts are either the people who are you know really quote unquote good at it, or the people who are really struggling and hoping to get good at it. I was like, Well, isn't that everybody? Like, like, they're just variations of that in between. But still. But still, I think that when I hear you talk, I can sit here and think, well, this could easily happen to my daughter, right? Like this could absolutely easily happen to her. And she, you wouldn't think that would be common, you know, for her situation. But who knows what goes on once she takes over her own, you know, care a little extra. And I think this is just, I think it's just incredibly kind of you to offer your experience so that everybody can can kind of look up and say, I wonder what what's going on in my life that maybe I should be paying more attention to? or What does my kid need that? I may be acting like, oh, they're fine. And maybe they're not, you know?
Carly 35:47
Yeah, definitely. That's why I want to, I want to share my story. And I want to let other people know that because yeah, when they when they hear that other people are going through the same thing. I wish, I wish when I was going through it, I would have had resources like this or someone, here's someone else's story and been like, well, that's me like I need to, I need to try to, you know, reach out and try to figure figure out how to handle things.
Scott Benner 36:09
So so Okay, so let's talk a little bit about like today like getting the mail right now in in now time now time, which is not a phrase commonly used. So what would that be called the present? There we go. Unbelievable, Carly.
Unknown Speaker 36:22
They're hard baby. I've
Scott Benner 36:23
done too many these podcasts. I just had now time. It's making me so you have a pump now. glucose monitor.
Unknown Speaker 36:33
Guess Yes, I
Carly 36:34
have a pump on a pump. Right now. I have the Medtronic 670 and the on the sensor. I really don't like it. I have so I'm actually on a clinical trial right now for not for our glucose monitor or anything, but I'm wearing a Dexcom for the clinical trial. And I'm in love with it that it connects to my phone and that it sets my Apple Watch. It's amazing. And so I'm gonna try to switch to Dexcom but I am currently on the truck. Oh, Medtronic, people. You must be so sick of turning on this podcast and hearing people say I like my Medtronic CGM. But you had no choice you live in Minnesota, which I believe is the headquarters for Medtronic isn't aren't they? Yes, it is. literally everyone. You go to the endo here, everyone up until like, probably a year ago, everyone had Medtronic. Now they're kind of figuring out that maybe Medtronic is not perfect. But up until up until a year ago, like literally every kid we didn't even know what like panda was or Dexcom was
Scott Benner 37:31
how hard how difficult could it be? to trick a person who thinks it's spending a day standing on a frozen lake fishing through a hole is a good idea. Right? Like it must be so it just has to be so easy. Like it just Hi. This is the only insulin popular out Oh, it is Thank you very much. And then you just take what it probably is a sticker on the box that says won't freeze during ice fishing. Which then right makes everybody there go Oh, this is this is the best insulin pump it won't for a perfect
Carly 37:58
insulin pump. Yeah,
Scott Benner 38:00
walking on water. So, but no, no, I didn't know that. I just you know, I know I bear saying every once in a while, a couple episodes. I didn't ask you what kind of pump you had when you came on. You know you offer that information up. I didn't know you were currently using Dexcom on a trial. But this is totally where I'm going to put the Dexcom ad right here. Yesterday took Arden and two of her friends to a small shopping district nearby our home, drop them off so they can have a nice day together. Arden was armed with a few things. They bought insulin pump, a juice box, her meter and test strips. But only one thing made the entire trip. Simple. It was the dexcom g six continuous glucose monitor and its ability to share Arden's blood sugars with me remotely, I just dropped them off and left kicked him right out of the car. I was like Hey, get out of here. Have fun, you crazy kids. As Arden was getting in the car, I said look, I'm not sure if walking around this heats gonna bring your blood sugar up or down. As soon as we see what's going on. We'll make a decision her blood sugar was 91 at that moment. The walking around actually Can you guess drove her blood sugar up a little bit. So she used her Omni pod put up a little temporary bazel rate continued on with the day. Then they went to a restaurant for lunch for art and had macaroni and cheese and salad. We were bolusing and when we missed on the bowls a little bit we are going to put in more insulin Why? Because the dexcom showed us the direction and speed of her blood sugar. It showed us that we missed a little bit with her meal and so we put in more now, the more almost help we got it a 150 and it leveled off and just as it leveled off at 150. What did Arden want to do? Well, her and her friends found a cupcake shop. We were able to Bolus at the 150 aggressively enough. Keep in mind these are results and yours may vary but Arden's blood sugar did not go up during the cupcake from the 150. But down settling in again in the mid 80s. All of that I'm going to talk right past the music. All of that is because of the functionality of the dexcom g six continuous glucose monitor direction, speed of your blood sugar. super important. Just as important, the ability for her blood sugar to be shared with a loved one, in this case, me. You want to make good decisions about your diabetes, start with this one, go to dexcom.com forward slash juice box and get the G six continuous glucose monitor. Tell me about the trial you're doing right now.
Carly 40:40
Yeah, so it's, um, it's really interesting, actually. So it's about people that have hypoglycemia unawareness. And, um, and recently, as I have started on getting my blood sugar's in better control, I will go out for a run and also wearing my sensor, I started realize this, I'll go out for a run and literally drop into the 40s and not even not even realize it and then get back and be like, Oh, I'm low. And so I've heard of this clinical trial that they're doing. It's measuring basically people that have hypoglycemia unawareness. It's measuring their brain activity when their glucose does go really low. And they think that type one diabetics have some sort of compensation or something going on in their, in their brain cells that are making it so their brain kind of says, you know, you go low all the time, so we're just not going to give the normal normal awareness signs, you know, the shakiness feeling sweaty and stuff, because it happens all the time. And I feel like we don't need to freak out about this. So So yeah, so they basically put you in, they put four IVs in you on one and both of your feet one both of your hands and put you in an MRI machine and drop your glucose really low, and measure your brain activity. And see if there's anything funky going on. And Carly for this you being paid $1 million a day. Is that correct? Because that's what I would charge to do that. I think it's like, I think it's compensation of like $500 a day, so it is quite a bit.
Scott Benner 42:02
Wow. Fancy and in Minnesota, that's like 1500
Unknown Speaker 42:06
right? Yes, yes.
Scott Benner 42:08
It says a lovely place anywhere cold. Really? You're gonna hear me speak poorly about I just.
Carly 42:14
It's very, it's a lovely house. Beautiful falls beautiful summers and beautiful springs. But yes, the winter is a bit a bit cold.
Scott Benner 42:21
Yes. My brother in Wisconsin says, come out and visit see the lakes. To which I respond. No. And then that's how that ends. We have beautiful lakes as I'm sure you do.
Carly 42:36
You got to come in. But you got to come in the fall. And
Scott Benner 42:39
one day, I mean, I'm just trying to get him to move home. I it's been a decade. I'm pretty sure he's not coming. But I I thought if I withheld my delightfulness he'd have to come back for it. But I don't I
Carly 42:49
don't know. He's not catching on to that.
Scott Benner 42:51
No, not at all. That that's he doesn't love my mom. I think that's what I'm just kidding. We tease them about it. Sometimes I'm like, Oh, you know, if you love mom, you'd come home and live here. And he's like, this is where my job isn't like, is it? But it actually is, he doesn't deserve that. He's a really nice person. Anyway, you so you're on this study, which is insane. But that's very nice. It's a nice thing you're doing for other people. Plus, you might get some answers for yourself. It's incredibly interesting that you're hearing that it's possible that people who experience a lot of low blood sugars might have a mechanism that tells them like, Look, don't feel like this, because you're more because your body spent a long time at elevated blood sugars. So it really adapted to that space. How long says something I'm interested to know after you brought your blood sugar's down to a more reasonable place. You didn't even feel it then at that moment, like in the beginning. Like like coming from like a 200 all the time down to an a you know, 100 all the time. That didn't make you feel oddly,
Carly 44:02
I think it was very gradual. I didn't like it wasn't like everyday I'd be at normal blood sugar's I was kind of you know, back and forth. So I think it didn't really hit me that hard. Um, I think maybe it maybe the actual lows did like I was not used to going low. So you know, if I was below 70 at all, like I was shaky, like not I could not function at all. But eventually Yeah, that kind of disappeared and I know sometimes can't feel my feel my lows.
Scott Benner 44:27
Wow. And and but you've never become incapacitated.
Unknown Speaker 44:29
Never know.
Scott Benner 44:31
So you're functioning. Do you look back and think Hmm, I wasn't as cognitively sharp as I thought I was in that moment or does that not even change?
Unknown Speaker 44:42
I'm like when I'm like running and I'm like say
Scott Benner 44:46
you say you go for running you're low. Do you look back like an hour later and think oh, I just as I was running, I thought one plus one equals turtle or nothing,
Carly 44:55
I guess. I guess not. Because I'm not really like I'm just more like have my music playing I listen to a podcast or something. So usually, usually I don't have to think too hard. So I guess I don't I don't really know. When I get when I get back home, I definitely can tell because I'll start fumbling around and you know, being shaky and be like, Hey, I'm probably low. Okay. But yeah, when I'm running, I can't really I can't really tell.
Scott Benner 45:17
Carly, are you excited that there's a high likelihood your episode is going to be called One plus one equals turtle?
Carly 45:24
Yes, that sounds like a great, great name.
Scott Benner 45:26
We're turtle math. Maybe we'll figure it out. Don't worry, but something's gonna happen. I said, I just said that. I wish you could all live in my head from it. I just said that. And I thought inside my brain, I thought, I've never had that thought before in my entire life. Like, how did that just come out? That's why people like the podcast who knows what I'm gonna say? I don't even know. God knows if any of this diabetes stuff is even correct.
Unknown Speaker 45:49
I'm just kidding.
Unknown Speaker 45:51
That's very true.
Scott Benner 45:52
You caught me a good day. I'm a little giddy today, Carly. So I'm so sorry. Sorry, to everyone's made it this far into the episode. Okay, so right now, you said your human agency sort of in the eight ish range that you're bringing down slowly? Which by the way, I like the I like the slow approach to like not getting crazy and just going nuts. How's your variability? Like? Are you bouncing around as much? Or are you? I guess it is 781? See? Are you like very stable around like 141 50? Most of the day? Or how does? How does? How's that?
Carly 46:28
I would say, um, again, it really depends upon the day. But I would say I'm pretty stable. I don't have a whole lot of dropping. When I first I will say when I first started working at the hospital, though, it's a lot of a lot of just the entire day. I'm on my feet running around. And so I that has gotten me kind of some, some ups and downs because you know, I'll go low correct gold high, like just kind of up and down rollercoaster. But I'm definitely figuring out my bazel bit more, a little bit more now. And actually, that is one thing that I do use the 674 is figuring out at work and figuring out how to change my basal rate, because I didn't even know and it has been kind of helpful for that.
Scott Benner 47:07
Is that is this? Is it the 670? Is that the one that does the Is it like an artificial pancreas type one?
Carly 47:13
Yeah, yeah, the auto mode. Yeah, what I first was very frustrated with and did not like, but after realizing that it could help you at work, I kind of it's kind of like a little bit more. It's interesting,
Scott Benner 47:23
but it targets your blood sugar for what, like, where does it set out? You know,
Carly 47:28
so I haven't set. I haven't set up the lowest setting, which I believe is like, I think it's like 70 to 100 or something like that. But it will sometimes be okay with me being you know, 141 50 even sometimes, which can get frustrating because then you end up eating fake carbs. Because you can't give yourself just like, Well, my girl bowl says that you have to pretend like you're eating something. Just to cut out microvolts to get you a little bit lower. You're tricking the pump. Yeah.
Scott Benner 47:56
I'm sorry. Go ahead. No, I was just gonna say I guess that's fair. It's tricking you. I told you it was gonna keep you between 70 100 and your 150. So I guess it's fair if you trick it back.
Unknown Speaker 48:05
Yeah, yeah.
Carly 48:08
You can't do that. I'm like, Well, it wasn't what am I supposed to do? Because it's really annoying that I you know, could potentially be in the lower 100 right now, and it's keeping me at 150. Like, it's annoying, right? I
Scott Benner 48:18
know, this is the official insulin pump of Minnesota, but it's not doing a good job for me and I have
Carly 48:25
a rep in Minnesota very well.
Scott Benner 48:26
No, we and and know exactly. That's not fair to Minnesota. At all. You guys made a wrestler governor, you know that right? Yes, it's winter or something like that. I'm just saying, as you know, maybe it is fair to Minnesota is what I'm saying. He's a conspiracy theorist now who lives on a beach in Mexico because he doesn't want to be in the country near what I'm assuming are the people who are coming to get them. So I think you guys did a great job. sussing that one out, and, you know, onward and upward. But um,
Carly 49:04
Oh, goodness. Yeah. Like, just ignore that part of our
Scott Benner 49:06
body visscher that that was his name. Yeah, he's a little he's, he's, I'm sure he's fine. But maybe he's just saying those things to get attention and have a television show. But I think he's one of those people who believes any crazy thing you might think he he's pretty sure it might be true. So good for him. Anyway, so So okay, so you're using that pump with the, you know, the auto mode, it automatically keeps your blood sugar at 150. And then you so I get what you're saying this, you pretend you're eating so it'll give you insulin. So it'll bring you down? Yes, but then that isn't. They're telling you you can't do that because that throws off the algorithm, which I gotcha. But what you're saying is you better hope that this tax calm doesn't hook up to a pump to make a different algorithm, buddy, because I'm getting out of here one way or the other.
Carly 49:57
Yes, exactly. What I do There is a way to like hook up the Dexcom, to the old Medtronic and like make your own artificial pancreas or something like that
Scott Benner 50:06
you just got out of my space, I'm not sure. What are some of the things you're looking forward to? I mean, with your own health as well as like, you know, with your life, like, you must feel like you're on a completely different path. And you've been on so far.
Carly 50:23
Yeah, I'm definitely looking forward to, um, I want to go to PA school, and I want to specialize in endocrinology. And the men work with people with diabetes. And I actually, um, yeah, I think my whole career path changed after kind of getting in control of my diabetes of wanting to somehow go into health care, it helps those that have diabetes, and I think realizing that teens have more time to spend with their patients and how, you know, you always go to the endo, and they're kind of you know, you get your agency and they don't have much time to sit down with you. I feel like the PA that I work with that my clinics despite you get more time to work with them, and sit down and you kind of get time for them to kind of say, Hey, what's going on here? You know, let's look at your look at your graphs and stuff. Whereas I'm more like a CD kind of role, where is on? And those don't think that's, I'm like, I'm really looking forward to be able to possibly go into that as my career.
Scott Benner 51:20
Are you getting better at that like, for yourself? Are you able to start looking at your graphs and really figure about like, Oh, I think this is that, and I'm at this point, now. I just look and I'm like, Oh, I know what this means. And I can adjust it in like two seconds. And, like, just Yeah. Are you getting to that point?
Carly 51:39
Yeah, I think, um, but also, I think I still have so much variability in my day to day activity that I still kind of, still in figuring out a little bit, but I'm definitely getting better at being able to look at it and be like, you know, you were whatever, like, made this you were now 200. You know, you can have both for this a little bit earlier, and, you know, maybe one more unit and would have been a little bit better. Um, so I definitely, in terms of like, running and stuff, because I do, I do run it quite frequently. And, um, that that's a little bit more of a challenge for me and figuring out exactly, I it seems like it varies from day to day what my blood sugar's do no matter what I do for that, so I figured that out.
Scott Benner 52:19
So I've heard, and I'm not 100% the right person to talk about this with but I've heard some people talking about if they, they tried to get the insulin completely out of themselves before activity, like before working out,
meaning that like right haven't had like an active bolt, there's no act of bolus, even the end of one. And that they can kind of work out forever without their blood sugar kind of dropping from that. Yes, that is something that I have figured out that if I have any insulin on board, I'm going to plumb it, no matter if I had, you know, 1000 carb breakfast, that was
Carly 52:53
a huge breakfast, it wouldn't matter. Like if I have any insulin on board, I'm just going to plummet no matter what. So I have to wake up. If I want to workout before work, I have to wake up super early and bolt through whatever I'm eating and you know, then and then go work out or just eat something that has more protein and not a lot of carbs and eat that and then just not have to bowl because if I have insulin, I'm just gonna plummet and not be able to not be able to finish my run.
Scott Benner 53:20
Well, this is a little unfair to you, Carly. I'm sorry, because we got a little bit of a late start because of me, but my schedule is super tight today. So I have to ask you if there's anything we did not talk about that you wanted to that I forgot?
Carly 53:33
I don't think so. I think we kind of everything.
Scott Benner 53:37
I'm pretty good at this. You are yours. I could tell like you were you were by the way. Congratulations. I know if you've ever been on a podcast before. Nice and chatty, I liked it. And well thank you know, amen. You knew what you were gonna say you got right to it, you spoke about it. Like you're obviously an incredibly bright person. And so I was like, This is great. I'm just gonna sit back and say stupid things about Minnesota on fairly. So thank you. I
Carly 54:04
was very nervous about what exactly I was gonna say. I was like, I'm gonna go for it. And just, you know, we'll do it.
Scott Benner 54:09
Are you happy that that went that way? Because you emailed me and you were like, what should I be preparing for? And I'm, of course no help. Anyone who's ever been in your position knows that I just emailed back. I'm like, it'll be fine. Don't worry about some people that doesn't really work for their personality too. Well, so. But you You really did. You went from what are we going to talk about to Don't worry about it to doing a really great job. So I genuinely appreciate you taking this time like this. Thank you. Thank you. You're very welcome. Dancing for diabetes has a new space they're working on they just completed the demolition portion of the construction process. You gotta go check it out. It's very exciting. Dancing, the number four diabetes.com were on their Instagram or Facebook pages to see those pictures. Huge. Thank you to Carly for coming on the show and baring her soul on so many important topics. Thank you all so to us. In the pod Dexcom, and of course dancing for diabetes for their support of the podcast. I do want to give you two other things here that Carly mentioned during the show. We are diabetes.org is the organization that Carly mentioned. They're not sponsors. But it seemed to be very helpful to her. So I think you should check them out. We are diabetes.org. And it comes up a lot on the show, especially with college aged students, but the college diabetes network is that college diabetes network.org. Also, don't forget the 1 million giveaway celebration is underway for the podcast. That is right in August of 2019. That Juicebox Podcast Thanks to you, we'll reach 1 million total downloads. And I wanted to celebrate with you in a way that you didn't have to do anything. It's a giveaway that you don't have to do anything to enter. So go to Juicebox podcast.com. Scroll down till you see the little thing for the 1 million celebration, click on it. You'll see all the stuff that's going to be involved in the giveaway on the pod decks comm and dancing for diabetes swag, one free item of your choice from myabetic.com. Stay put medical is going to give us a gift bag. We'll give you the winner. How about a 30 minute consultation with Jenny Smith. Oh, come on, right 30 minutes on the phone with Jenny. The winner will also get two new bold with insulin t shirts. Which if you want to see right now, just go to Juicebox podcast.com. and scroll down to merch you can buy them now if you want or try to win the giveaway. And the big prize, depending on how you think of it could be the prize you don't want, you might end up going Hey, Scott, I'll take all this stuff except for this last thing. But if you do win and you are interested in offering one week of unfettered access you and I can text call by phone, FaceTime, whatever you need any questions you have for seven days, I'm here to answer them for the winner. The contest is open to everyone. There are some limitations for overseas, you'll see when you get to Juicebox podcast.com. But everyone can play. Everyone can enter. It doesn't cost anything to enter. And you can enter once a day for nothing. You don't have to follow me on something or do anything. I'm not going to make you do anything you do those things if you want to. But I'm not going to make you do something to enter. Just go enter. There was 324 I just logged on 324 entries so far. And you can enter once a day so you can get like I don't know how many days left in August, but for every day left in August, you can get an entry give yourself a better chance to win. That's pretty cool. I just actually refresh it. There's 326 entries now You better hurry up and get over there. Thank you so much for listening to the Juicebox Podcast. I hope you guys are having a great summer. hope you really enjoyed this episode. I thought there was a lot of insight into a number of important issues here. 1 million downloads new swanky t shirts. This podcast is really classing up.
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