Scott Benner 5/11/22 Scott Benner 5/11/22

#680 Zach and Nancy

Zach has type 1 diabetes, Nancy is his mom.

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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 to episode 680 of the Juicebox Podcast.

Nancy is the mother to Zach. Zach has type one diabetes, and they're both here on the podcast today to chit chat with me. While you're listening, please remember 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 came within a hair's breadth of being called golden doodle.

If you have type one diabetes, or are the caregiver of someone with type one diabetes, and are a US resident, please go quickly to t1dexchange.com/juicebox and fill out the survey. It will take you not long at all fewer than 10 minutes. And your answers which will be easy to come up with like they're not tough questions is what I'm saying are both HIPAA compliant, absolutely anonymous. And, as a bonus, we'll help people living with type one, t one D exchange.org. Forward slash juicebox. This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor, learn more and get started today@dexcom.com forward slash Juicebox Podcast is also sponsored by Omni pod, the makers of the Omni pod dash and the Omni pod five, Learn more at Omnipod.com/juicebox. Both of these advertisers have some version of a thing you may be eligible for where you get some free product to try out. I'll talk about both of them during the advertisements which will happen in the middle of the episode. Who wants to go first?

Nancy 2:17
I will. I guess Go ahead. All right. Hi, I'm Nancy. I am the mom of Zack and about five years into T Wendy and just happy to talk to you.

Scott Benner 2:32
How old are you Zack?

Zach 2:34
I'm 14.

Scott Benner 2:36
You were diagnosed that nine.

Zach 2:39
I was diagnosed that eight eight.

Scott Benner 2:40
Okay. Just turned 14.

Zach 2:43
You Yeah, yes. This year.

Scott Benner 2:44
Happy birthday. Of course. Alright, well, let's go like this for a second. Zack, do you remember anything about being diagnosed?

Zach 2:56
I remember, whenever my mom found out about this, we were watching a movie. And I was going to the bathroom so much. And my mom was taking like this class on type two, and they gave the symptoms of type one. And so I was going up to the bathroom a lot. And then she No. She noticed that. And so right when we got home after the movie, we checked my blood sugar. I was 400 something. And that's that's it? Basically, I was just going to the bathroom a lot. Nothing serious. I didn't know at

Scott Benner 3:37
the time, Nancy, what made you Why are you looking into type two?

Nancy 3:40
Well, my mom had been diagnosed with type two for many years and just decided to take a class on her diet and how to possibly reverse some of it, you know, and and so I just went with her to support her and yeah, they were just talking about the signs and symptoms. And that week, which is the week before I my husband had also been diagnosed with type two and so I was like, You know what, I think we need to have a meter in the house since his doctor had never recommended he have one. So I bought one and just started recognizing some of the symptoms.

Scott Benner 4:29
What Nancy what movie were you watching? Zachary

Zach 4:34
what was it? Batman vs. Superman? Yeah.

Scott Benner 4:39
Do you remember the movie at all?

Zach 4:42
Fate like some parts? I don't remember because I had to get

Scott Benner 4:46
up. Also wasn't a great movie. Yeah. At least it didn't ruin their wisdom. When Arden was diagnosed. My daughter was diagnosed a long time ago. Zach she was two and that was 2006 And back then to watch a movie when you weren't in your home or at a movie theater, you had to have like a little portable DVD player. So we had one of those. And my daughter watched, hold on, excuse me, I apologize. My daughter watched sky high over and over and over again. And it took years afterwards, if it would come on TV, it would make my wife really sad. And so because it was on in the hospital, like, you know, as my daughter was hooked up all the tubes and everything, and, and just recently, they watched it together again. And I thought it was a big triumph for my wife. Actually, I don't think you're gonna have the same problem with Superman versus whatever.

Nancy 5:42
He probably will not watch it again.

Scott Benner 5:45
That was why I thought you wouldn't have a problem because I don't think you're gonna watch it again. How could they make those Marvel movies? So well, Zack, and nobody at DC figure out how to make a movie.

Zach 5:56
I have no idea.

Scott Benner 5:58
I don't either. It's fascinating. It's just like, like, they're right there. I know. You don't want to copy them. But like, you could, like, can you glean something from it? Like, I don't know how you ruin a Superman movie? I don't know. They did. So anyway. All right, Nancy. So everybody in your life gets diabetes of one form or another all at the same time? And did you guys think? Like, like, did you? Was it like a, like a horror movie? Was everybody looking around going like, Oh, I wonder who's next? Or you were focused on at that point?

Nancy 6:30
Yeah, I was focused on Zack, you know, I mean, we're overweight. Kind of, you know, my husband and I, and not that my kids were really severely overweight. But, of course, I was thinking, man, what did I do? You know, I cuz I didn't know at the beginning if it was type one or type two, or, or what you know, and, and so it was, at first a lot of guilt until, you know, the next day when they said, Oh, no, this is type one. This has nothing to do with anything you did. And and then it was just focusing on learning about that.

Scott Benner 7:09
Did you have trouble believing that Zack? Like did you think it was something you did? Or how did you feel about it?

Zach 7:16
Um, I didn't feel I didn't think about it very much. I just I didn't know what was going on at the time. I just the the question that I asked right when we got like two that there. And then they said I had type one. I didn't know it was like a permanent thing. And so I'm like, Wait, so how long do I have to deal with this? That's probably the only thing. I I was just curious. Like, how I had to deal with it, how long I had to deal with it.

Scott Benner 7:48
I'm always interested about this. I don't get to talk to enough younger kids that have recollection. So did someone explain it to you? Or did you figure it out through the conversations?

Zach 7:59
Um, so they had this separate room in the hospital for us to learn stuff about type one, like, what foods have carbs what foods don't have carbs? The fat and protein? And we, we were like learning carb counting? Kinda. Yeah. And then we didn't really use it in the hospital, though, because we were just on shots. But it was probably just for the future. Yeah.

Scott Benner 8:27
What isn't that something Nancy that that? Did you have any record any knowledge that he didn't understand what was happening to that level?

Nancy 8:36
Um, you know, at eight, and he's a pretty happy the lucky kids still is kind of and, but he never voiced. Not understanding that it was forever until we got home. And it was a couple of days later. And I that broke my heart. You know, whenever I had to tell him no, this this is going to be forever this until there's a cure. But I do not remember him saying anything. At the hospital

Scott Benner 9:14
that had to be more upsetting than paying for Batman versus Superman.

Nancy 9:21
Definitely, yeah.

Scott Benner 9:22
Terrible. Okay. Yeah, yeah. Wow. That's, uh, I mean, do you hear it, Zach as we're talking about it, how bizarre that is, like, like, not unexpected and nothing you did wrong, obviously. But your mom and the doctors all imagine they make this assumption that people understand you don't mean that. Oh, I know what type one diabetes is they? I don't have to explain it granularly to this kid, but this is never gonna go away is a it's an impactful thing. Do you remember that conversation at all? Zach when your mom told you that? This is forever.

Zach 9:56
Um, I don't fully remember it. But I do. Remember Remember, she told me like, yeah, it is going to be forever. We just need to manage, like, how we deal with it. And that's basically all I remember, I don't have a lot of that conversation.

Scott Benner 10:14
Yeah, I have to tell you that very recently, I had a conversation with my son who's 21, where I still found it upsetting when I, we were just talking about health in general. And I said, you know, I forget how we were in the car, and he was struggling with something I said, you know, you're lucky that there's, you know, a medication for this thing I said, because a number of years ago, there wouldn't have been, you know, this would have just been a burden you would have carried forever. And I said something like, couple 100 years ago, you know, the, the group would have been asking you if you wanted to be put down, or if you want to just be left behind as we moved on to the next encampment, or wherever we went. I was like, you've no idea how, how far things have come. And that conversation led to us just saying, like, you know, there was a point in time in, in modern, you know, not so long ago, history where even if you broke your leg, you were probably dead. You know, like, just like, what are you gonna do? It's, it's just, it's crazy how far we've come in such a short amount of time, but how much, especially when we're younger, we just think that the body we got is, it's just gonna be like this forever, and nothing's ever gonna happen to it. So I'm comforted to know that Zack doesn't really remember the conversation that much.

Nancy 11:32
Right? Thank you.

Scott Benner 11:35
Zack, how would you describe yourself now five years in? Are you? Are you comfortable with diabetes? Is that a problem for you? How do you think

Zach 11:46
I it's not a big problem. Sometimes, like if my blood sugar's below, I just I can't think straight like, say I'm at school and I'm doing a test and my blood sugar's low, I need to do something. But like, at home, it's pretty normal. It's just like one click away on my phone. And we do need to do carb stuff, though. But it's pretty easy.

Scott Benner 12:11
amongst your friends, is it talked about? Or is it just sort of a thing that exists?

Zach 12:16
It's not really talked about in my friend groups. You know,

Scott Benner 12:19
if you got incredibly low amongst friends, do you think they'd have any idea how to help you?

Zach 12:26
Um, a few of them, maybe, but because I've mentioned it once, but we don't talk about it. They know that I have it. And I think I've told them, how to how I deal with it. But I'm not too sure if they fully know.

Scott Benner 12:45
Gotcha. And Nancy leaving the hospital, what kind of technology do they have for you?

Nancy 12:52
We, we did not get Dexcom until he was about six months in I think, and of course, MDI. I think we even we didn't even start with pins. We started with syringes and vials and my husband, he's an IT guy. So he had he made a an app for an Android phone at the time, just so we could put in his carb ratios and stuff. And so it was a very simple thing. Only we used it really and you know, so we use that and the grandparents would use that, you know, to help when watching him but we got Dex Dexcom about six months and Omni pod. Was that a year end? Zack? I can't remember.

Zach 13:47
Yeah, I'm pretty sure it was a year and

Scott Benner 13:50
how do you like using a pump Zach versus injecting?

Zach 13:54
Oh, it is way better? It like getting the shots over and over again. It's it's, it's it's extremely like, what's the word? Tedious, or? Oh, yeah. It just happened.

Scott Benner 14:12
We're on the same wavelength. I was thinking I was thinking you were gonna say tiresome. So basically, you and I have synced up already in only 12 minutes. I know how you're thinking. Excellent. So just repetitive and cumbersome. Yeah,

Zach 14:29
but the pump like it just replaced it was replaced three days. Well, before it was replaced three days. It was like one day and then we had to change it because of the insulin we were using. But now we have like u 200. And we are now changing it three days, which is way better.

Scott Benner 14:49
Oh, you're using a how do they how do they Nancy How did they categorize that? They call it stronger like potency. How do they talk about those insolence.

Nancy 15:02
I, I just always thought about it is that one is a double strength? You know, I don't. And I asked for it. I don't they didn't really bring it up. So I don't know if there's a particular way they, you know, really talk about

Scott Benner 15:17
how you think about it, though. So for people who don't, I mean, we never really talked about this right? There's you 200. There's you 402. Is that right?

Nancy 15:27
I think maybe you 500 I'm not sure. Maybe I'm wrong. But yeah, Zachary was, he's always used a lot of insulin and had high Basal rates. And we were going through pods, like before, 48 hours was even up,

Scott Benner 15:47
because and because the pod holds 200 units, that just wasn't enough for you. Right?

Nancy 15:51
Right. Right, he was about 100 units a day total. And after we started looping a couple of years ago, and about a year in, or maybe a little less, we were seeing a new doctor, because the other one didn't really want to cooperate with my requests. So I, we were seeing a new doctor, and I think he understood that we had a very good handle on diabetes and how we were managing. And so he went ahead and let us have the u 200. And it has made a world of difference and just how you don't think of changing a pot every two days as being cumbersome, but it's it's just allowed more freedom and, and less thinking about diabetes. So it's been really good for Zach, I think,

Scott Benner 16:48
Nancy, can you give me some context on why Zack needs more insulin? Or do you not know?

Nancy 16:54
Um, you know, I'm not really sure. We, if he's been always involved in some sort of sport, usually, you know, he used to play baseball. But not very competitively. It wasn't like a all the time practicing kind of thing, but possibly because of his inactivity, or I really just don't, I have no idea. But that's just the way it's always been for him. If they

Scott Benner 17:29
ask you. Do you get judgment from the doctor? When you ask for it? Or you don't? I mean, like, is there an underlying inference of like, you're taking in too many carbs?

Nancy 17:41
Well, you know, I with the previous doctor he's all he was more concerned with, well, why do we want to change anything because Zach's a once he had been coming down at that time, before looping, we had been doing we listen, we started listening to your podcast, and I read sugar surfing around the same time and, and his agency was coming down and I want to stay at a few years ago, his a one CD was maybe six point a, you know, something like that. And then whenever we would ask the doctor about it, it was about changing the insulin. First I asked for FY ASP, and he's like, Oh, no, we're not doing FY ASP, even though it had already been approved for the pod. And but he never mentioned anything about oh, he's using too much insulin and Zach's never been a very heavy carb eater

Scott Benner 18:55
yet. I want to say like, I'm not saying that I that that was my fault, either. I'm just trying to see like where this conversation might end up going if you start having it cold in the doctor's office. So can you like for context that do you know about how many carbs you eat in the course of a day

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Zach 22:49
Versus the day like on a regular day, I'd probably eat maybe 80 to 100 carbs.

Scott Benner 23:05
See that's not crazy, right? Like there's nothing crazy about that like and I'm going to do some math for a second. That's always fun. When I do math apart. Let's just say it's 100 carbs. We'll just say that for fun. Do you know what your insulin to carb ratio is? One unit covers. However, let me check. I'm interested Nancy Do you know don't say if you know

Nancy 23:34
well, if if he was on you? 100 right, it would be 123 or one to four. Okay. And and I like looking at Nightscout I know that his regular average intake of carbs is about 150 a day. Okay, still not very high. I don't think

Scott Benner 23:52
Arden's one that four and a half I think. So, if we divided by just for for fun, then 25 units for 100 carbs, fees taking in 150 a day. What is that? 3540 ish, and that is Basal. What's your Basal rate sec.

Zach 24:16
Basal rate is 17.8 units for the day.

Nancy 24:26
A day. Yeah. Okay, that's a view 200 though. So if you know we're doubling now.

Zach 24:33
Yeah, so 34 35.6 35 divided

Scott Benner 24:37
by 24. So your Basal would be like 145. There's nothing crazy about any of this. Like

Nancy 24:43
Well, I do have to say though, he started playing tennis over the summer. And we have seen some amazing reduction. It was crazy the amount of reading Shouldn't we've had to make over the last several months? Yeah. So maybe it was the inactivity.

Scott Benner 25:08
What's crazy is that I can't hit a tennis ball saved my life. You can do it

Zach 25:19
decently Yes. Yeah,

Scott Benner 25:21
I can't do it at all. I've I've fairly good hand eye coordination. And if you hit a tennis ball at me with a tennis racket, I just don't I don't hit it with. I don't, I can't find it. Just the ugly and horrible. So, okay, so you, do you think? Do you think he needs that you 200 Still not that you're not getting rid of it helps anything. But do you think he could get away with 100 at this point?

Nancy 25:51
He might. But some of the things that I've noticed, that I really like is, you know, it takes half as long to get a Bolus in with Omni pod. You know, if we were talking about let's say it's a large meal, and it's a 20 unit. Bolus, have you 100. It's gonna take, what 1618 minutes or something like that to get the Bolus in using you 200 It's half the time. Yeah.

Scott Benner 26:25
So the pod delivers the insulin more slowly, I think so that it has time to disperse once it's under, under the skin, right? Because at times, so you don't get tunneling. And it doesn't it doesn't come flying back at it. So that's a great point. So just mass mass of liquid or volume, volume of liquid isn't half. Oh, cool. All right, that makes sense. I like that idea. I've never considered this before. Like, it's funny. Like, I mean, Arden's Basil is probably like one right now an hour and and she's one to four and a half. So I don't think her insulin usage is really that much. Like her needs are that much different than than Zach's really. But you're making a lot of good points. That's cool. All right. I didn't want to. I don't want to belabor the point. I think it's interesting. Yeah. Zack, did you notice your needs change? As you got more active? Or did someone have to tell you did you put two and two together?

Zach 27:24
Um, I'm pretty sure I put two and two together. i No one like specifically told me but like people did hint. Well, my blood sugar inted at like, me, like needing less insulin, because I kept going low and playing tennis. And so I guess that meant like I needed less insulin before. Like, before meals. Wait. So I'd need less insulin on the meals before activity. So I don't drop.

Scott Benner 28:04
Okay. All right. And you're looping, right, Zack, do you have to make any overrides for tennis? Or is the loop handling it with your current settings?

Zach 28:15
Yeah, we have a tennis override, or the very active override, but it varies. One has less insulin, but it depends on what my blood sugar is going into it. So

Scott Benner 28:29
how long before your activity? Do you set the override?

Zach 28:34
Maybe 10 to 15 minutes prior

Scott Benner 28:38
you set off when you're done? Or do you like it to end before you're finished?

Zach 28:42
We set a timer on the override for two hours. So that it will just turn off automatically. How long status? About two or one and a half hours?

Scott Benner 28:56
Okay. All right. Excellent. You figure that out on your own? Or did your mom help you?

Zach 29:01
My mom helped me.

Scott Benner 29:02
How much did this does your mom still do day to day? And do you like that? Or do you like what do you want to have happen as far as control of your insulin?

Zach 29:14
I'm uncomfortable with her helping me because I I'm not too sure about like, if my blood sugar is low. What if like, my blood sugar is on like I don't fully know, like what my blood sugar is going to do at times. Like sometimes when there's a meal. We use like three hour and then four hour, but we split the carbs up so sometimes I think it's all taco but there's fat and protein which we need to account for which mom?

Scott Benner 29:52
Yeah. Oh, that's excellent. And you're happy for your mom to be helping? Yeah, okay. I wouldn't be too bad. otherwise, I would not like don't. If I was you I'd let her do it as long as she wants. You're kind of young still. But do you think about college?

Zach 30:11
Ah, not yet. Not really. The one thing I've been thinking about is that night time, whenever I'm by myself, it's going to be hard to control my blood sugar.

Scott Benner 30:24
Okay, so that's a concern of yours. Yeah, yeah. My daughter has been messing with learning some boluses this week. And I said to my wife was like, it's gonna kill me. Because she goes to bed. She's like, I did it, then I'm up for like, another two hours fixing what she screwed up, which is, which isn't too bad. She's good. She's figuring it out. And then I just kind of go back to her later. And I'm like, Hey, right here. Can I kind of point to our graph a little bit. I was like, you just needed to do this or it's Halloween now give coming up. And there seems to be these little bite sized Milky Way dark bars in a little candy dish. She's been like, doing flybys on those once in a while, you know? She's like, I Bolus for them. Like when she's like, you know, when I ate it. I was like, alright, well, if your Pre-Bolus that he can sleep? Do you have trouble with Pre-Bolus thing at all, Zach, or do you see the benefits?

Zach 31:23
Um, so I see why we need to Pre-Bolus but it does sometimes get on my nerves, because like, I really want to eat something like I'm hungry. And but then I have to Pre-Bolus because it needs the insulin needs to go in. So that the carbs so the carbs and insulin are like, meeting at the same point, instead of the carbs going first.

Scott Benner 31:50
Zack, do you know that? And not don't get me wrong. Okay, like, I'm not weepy. But I just got like a little happy sadness inside of me, because you're using my words that I'm assuming you got through your mom. Is that how that'll happen? Nancy?

Nancy 32:04
I don't know. You know, actually, we met you one time. When you were in Atlanta for a JDRF thing. Summit.

Scott Benner 32:13
May I say real quickly. I was fantastic that day. Am I wrong?

Nancy 32:18
Excellent. Excellent. But so I'm not sure if he's, I mean, of course, I have mentioned it also. But maybe he's remembering when you went and talk to the youth there that day. Oh,

Scott Benner 32:32
Zack, you were in that room?

Zach 32:35
Yes, I was. And that those are the words that I remember you like talking about you had this board with the graphs. And you're saying like, Oh, we need to make the carbs meet the insulin, because if the carbs going first, then the insulin won't have enough time to like, get rid of all the carbs.

Scott Benner 32:52
Exactly that that that's stuck with you all this time. That was before COVID. Right? That was right before COVID? Yeah. Zack, I'm like a hero, aren't I? Yeah, just teasing. You. know, I really enjoyed that. This is one of my favorite things about going and giving talks is that I like I like saying it to the parents and then saying it to the children separately. Because it was act this is helpful that you can answer a question for me. The reason I the reason I do that, is because it's my expectation that when you get home, if I don't talk to you, like if you're just off in a room coloring, and I realize you're 14, but you know what I mean? Like if they stick in some kid's room, right? And then your mom, your mom's off listening to me. And I'm all like bold with insulin tug of war, and I'm saying stuff like that, then you get home. And you haven't heard me that when she starts saying it. You probably think this lady with her ideas about my insulin again. But I Yeah, right. But my idea was if I tell the kids to that when the parents are talking about it, there'll be some common starting ground. And did that actually work?

Zach 34:02
Ah, yeah, I think so. Right? Right after the entire like Summit, we got in the car. We talked about what we learned. And I'm pretty sure my mom brought up your thing, but I knew what she was talking about. Because you were you were talking about it with my group. And so, yeah, that sparked conversation. And we talked about that.

Scott Benner 34:26
So happy. Really, mainly, I'm just amazed at something I thought of actually worked, but because, Zack, listen, when you do things differently than other people, here's a life lesson for you. I know it's great when older people tell you stuff like this the first time I don't know if you've ever heard the words fake it till you make it. I think it's an AE reference. So I'm hoping you haven't heard it yet. But it just it just means like, you know, be confident about things and until you are the person you want to be. Say you're that person And the first time that I spoke somewhere, I said, Well, I would like to. So I don't know how common this is. Most people like go into something and they speak for like a half an hour and they leave. Isaak, I'm not getting on an airplane, let alone a car to talk somewhere for a half an hour, because I'm chatty. And so I need more time, right? So I tell me, so when I set up the speaking events, I do a morning talk, I do a mid afternoon talk, at afternoon talk, that's a q&a. And then I go talk to the kids, I speak four times during the course of the day. That's not because somebody told me that was the right way to do it, or because I even knew that was the right way to do it. It's what I imagined was the right way. Go in talk to people in the morning, give them like a kind of like a general overview of the ideas and a couple of samples. So they can think like, oh, cool, I would like to do that. Maybe I'll find this guy again, speak again at lunch, because you've got everybody captive, right? And then you know, and then you go over, like the finer details. So that they can think like, oh, well, that guy did it. Maybe I could do it, and then do a q&a later. So that once they've had time to kind of ruminate, they can come back and ask questions. And then my last idea, talk to the kids that when they get home, there's no I mean, less resistance. It's always my assumption that if you're coming to hear somebody talk about diabetes, you're not there because things are going great. You know what I mean? Like, you know, people with like, five, five a one sees aren't like running around asking people how insulin works and stuff like that. And so when I thought of that, zack, zack, you ever curse? I don't want to get you in trouble. Rarely, yeah, I just pulled that out of my ass. You know what I mean, man, like I was on the phone with somebody. And they're like, What do you want to do? And I made don't tell anybody that I made all that up. It was on the phone. It isn't something like I masterminded in a lab. I said it out loud to somebody. And as I was saying, and I thought, Oh, that makes sense. And then I paused like, I wonder if she's gonna let me do this. And then she did. And I was like, oh, and then I went and did and I'm like, Oh, I think that worked. And then I did it again. And again. And again. Yours is the last time I ever did it because of COVID. And I'm just really, like, I'm thrilled it worked out for you. What is your agency's EQ?

Zach 37:29
Was it 5.6? Last time?

Nancy 37:31
Yeah. Yeah,

Scott Benner 37:32
that's legit. Congratulations. Seriously, man, good job. It's not easy. Like I know, it can start feeling like oh, this is how it goes. And it's normal. But there are a lot of people walking around with they'd murder you for that a one sees that? You know, maybe mentor people would be people would still, they'd at least break into your house for like, that's a really, that's a legit thing. That's well done. Yeah, that's you and your mom. Are you guys a team?

Zach 38:03
I think my entire family other than my, my one sibling. But yeah.

Scott Benner 38:09
Real quick. So some siblings are helpful, and one of them isn't?

Zach 38:14
Well, I only have one sibling. Oh, they kind of help but

Scott Benner 38:21
I just, I was just hoping to get you to badmouth a sibling, but since that's not what's gonna happen, we can move on. That's fine.

Nancy 38:27
His his brother is two years older than him. And he's six, almost 16. So not too involved in being helpful about this diabetes?

Scott Benner 38:41
I don't know. I mean, do you really expect your brother to be helpful?

Zach 38:45
No, not really.

Scott Benner 38:46
I wouldn't either. Yeah, yeah. Yeah, I'm with you. Like, do you need help?

Zach 38:54
In certain areas, yes. Like the carb counting, and like splitting the carbs up with like, the long absorption time and the shortened function time. But other than that part,

Scott Benner 39:05
no, you don't need help. Like, like from like, like you're buying me. What would your brother help you with?

Zach 39:11
I don't know. He would probably just be staring at my phone. Wait, why are you doing taco? Yeah, that's three hour absorption time.

Scott Benner 39:21
Yeah, yeah. Yeah.

Nancy 39:23
You're not eating tacos.

Scott Benner 39:26
He probably wouldn't be three tacos.

How? How are you overnight? Is there stability with the loop overnight, Nancy?

Nancy 39:35
Yeah, you know, um, my husband takes the night shift. I'm going to be honest, and he's just a night owl and I at 10 o'clock I'm out. And but, you know, he was having some lows. Like when I was talking about we've had to reduce his insulin Basal rate a pretty good bit and he was having some lows, but overall, yeah, he's pretty stable overnight.

Scott Benner 40:04
Huh? Cool. That's excellent. As far as you know, but you're asleep.

Nancy 40:08
Well, I, I, I know. Believe me.

Scott Benner 40:14
Nancy, how would you work that out? Is it something you can say in front of your son or No?

Nancy 40:22
Listen, this is how it all just happily worked out. So

Scott Benner 40:26
I think you're full of crap. But okay, that's fine.

Okay. That's hilarious. Zach, I'm going to ask you like a ham fisted question that I don't usually ask on the podcast, because I don't like to say I don't. I don't like my podcast to sound like everybody else's. But for a half a second, if, if you if somebody asked you to describe what it's like to have diabetes, what would you tell them?

Zach 40:59
That's a difficult question. Um, I would say it's your, your it's basically life, but just a little more numbers. And you have to manage your life life a little more? Well, okay. I'm like, it is a difficult question. Alright. Take your time. Ah I, I'd say. I mean, for the first year, a few years, I mean, it's difficult to like comprehend, like, the like what you guys need to do because like, first there's carbs, then there's the Basal rates, like for how much you need throughout the entire day, even without the carbs and you need to add the carbs with the Bolus. And then you have to figure out the Bolus from the carbs. But after you get past that stage, it's pretty easy. All you need to do there is just like, add the carbs out. But it's, it's not that hard to live with. It's, it's, it gives me some perks to

Scott Benner 42:24
go ahead. What.

Zach 42:26
Okay, I'm perks like meeting you. Or

Scott Benner 42:33
I start your sign. You don't have to you don't think kiss my ass. Zack just is there anything good about having diabetes? Are you just trying to be polite? What's going

Zach 42:42
on? I mean, it's true. Yeah.

Scott Benner 42:46
It opened for people. Like it sounds weird. They don't know how great I am. You know, made me. Yeah, yeah. You met me in person. You know, it's, it's an amazing, it's experience. Did you hear angels singing when you saw me or no? Did that not happen?

Zach 42:59
Yeah, there were in the background, like in the corners of the room. And then like, there was just like spotlight on you in the middle of the room.

Scott Benner 43:06
A lot of people report that that's why I asked. So yeah. How did you like Jenny? Nancy, how did you

Nancy 43:14
like? Yeah, yeah, I enjoyed listening to her. Definitely.

Scott Benner 43:18
Oh, not as much excitement for me.

Nancy 43:21
We were, you know, we were already doing really well, with agency and managing and everything. And so I don't know if I could take away as much as other people. And maybe that's making me sound like I'm full of myself. I don't know. But, you know, but definitely, I enjoyed, you know, listening to her. Cool.

Scott Benner 43:49
I have to admit, that one blew my mind a little bit. The Atlanta one because there were there were a lot of people there that traveled a great distance to get there. And it flipped me out a little bit. So, you know, I was like, wow, like they repeat their bag. Remember before one of the talks, people we were talking before, before we got going and people were saying how far they had come and some people drove like, from different states and wow, multiple hours. And I was like, Oh, that's awesome. Now, you think that but it's a lot of pressure. You're like God, they really, I better say something important. Right? Imagine if I freeze up, Zach. And all of a sudden, like people are like, Hey, I drove here from Tennessee. What are you doing? Let's say something. But there were a number of people there that were there to meet me, which that was the first time I experienced that on on such a significant level. Like that. So many people told me I just came here so we could say hello. And that's when I recognized. It's one of the times I recognized how impactful the podcast had been that people would do that was kind of staggering to me actually. And I wasn't worrying Zack. Now, excellent.

Zach 45:03
You were talking about an insulin cell and a carb cell like doing a tug of war?

Scott Benner 45:10
I am entertaining. I hear what you're saying. Yeah. Oh my gosh. Alright, so. So Nancy, then most of what you learned, you learned through the podcast,

Nancy 45:24
that and surfing and shiver surfing, I kind of they're very similar, you know, and just the way you think about it. And yeah, I, I do have to say, I'm pretty disappointed with the education that you get from, like, the endocrinologist and, you know, I mean, at the hospital, they give you the don't die advice. But you know, I felt like there had to be more because it was such a roller coaster with their instruction. And so at like, a year and a half in, I just started seeking out whatever, I could find information on how to do it and found your podcast. And that just I joined a bunch of Facebook groups and and

Scott Benner 46:22
yeah, Was that helpful, like meeting other people online?

Nancy 46:27
Sometimes helpful, and there are some some groups that are helpful, and some that are more people just asking for help, you know? And

Scott Benner 46:39
they don't always have the answers. You're saying?

Nancy 46:43
Not not all groups are the same? No, there are some really great ones. And I do feel like the podcast juicebox group is it's been great. I tried to reach out and help people whenever they need it. I'm, you know, of course, we're part of the looped group on Facebook. And I used to be a mentor on there. And I'm still mentoring several people, but just kind of was overwhelmed with how many requests so I don't know how you do it. But yeah, so I just, I try to help people mainly now on there, but I did learn some on there, too.

Scott Benner 47:25
That's interesting. Tell me a little more about that, like the, you see, you're trying to help people online. So I'm assuming you amassed this knowledge, and you suddenly realized that Well, I can explain this to other people, and this would be helpful to them. And that's something you wanted to do.

Nancy 47:41
Yeah, I just I felt like I, I would feel bad hearing about people's roller coasters or, you know, just struggles and knowing that there's a way to avoid it. I wanted to share and help them and you know, of course, with looped in with DIY loop and kind of being responsible for making your own setting changes anyway, because most endos won't really help with that yet. Just helping them you know, following their kids Nightscout. And being in regular communication about that I just, I just feel a responsibility to help people.

Scott Benner 48:29
How did it become overwhelming?

Nancy 48:32
Well, you know, because when I mentor someone, I can't just look at their Nightscout once a day, I would be looking at every meal and communicating with the parent most of the time, you know, Hey, what did you have to eat? Well, how did you enter the absorption and when you have when you're doing that, for five or six people at a time, every day, it can get overwhelming. And last, right before Christmas last year, I just decided I needed to remove my name from the mentorship tab and just kind of continue helping who I was already helping. And so that's every once in a while, if I see somebody asking questions, and I feel led to help them I'll send them a message but I don't get more requests.

Scott Benner 49:32
Gotcha. Yeah. Did you find that people wanted to stay with you longer than you felt like they needed you?

Nancy 49:40
Sometimes, and I think it's been a learning process for me, of how to impart more of my knowledge about it. And let them take over more, you know, instead of just continually just helping them or telling them how to make the adjustments,

Scott Benner 50:05
I find that after you're at it for a while, it's very it's more impactful to ask them questions that you know will lead to the answers you were going to give them so that they can find the answer on their own or at least feel like they did. And then they can start it, it's easier for them to wire together, they start putting two and two together easier. Like I do it on the Facebook group to like, there's sometimes people ask questions, and I know the answer. And instead of telling them the answer, I asked them a question that leads them to the answer. And then you're not just teaching them you're teaching the other people that are watching as well. But how do I do it? I mean, I don't say yes to everybody. Right? There are people who email me that I'll get like, I sometimes answer an email six weeks after I receive it. And the the trick to that is to you have to let go your guilt. Yeah. Did you feel real driven by guilt when people ask questions? Like you had to get back to them? Or it was unfair, if you didn't like that kind of stuff for no.

Nancy 51:15
There is no not getting back to them. For me, yeah, so definitely, you know, I just I feel led to help them, you know, and so, yeah, I guess there was guilt if other things were going on, and I couldn't, you know,

Scott Benner 51:37
Zack, can I ask you, and you can be honest, your mom won't be upset if you're honest. Did it bother you that she was helping other people? Or did you like it? Or do you not even really not even aware of it?

Zach 51:49
So I was aware of what I was aware of it. I just, I didn't I thought it was fine. I thought it was good that she was helping other people.

Scott Benner 51:59
Yeah, yeah, you just you did. But you didn't have like a, like, Why isn't she helping me?

Zach 52:06
No, she she helped me as well. Yeah. But she just had other people to help as well.

Scott Benner 52:12
Did it wasn't noticeable. Like, it sounds like she was spread a little thin. Did you feel like that? Like was she like, at eight o'clock at night instead of where she normally is? Was she helping someone or on the phone with a person or something like that?

Zach 52:26
Sometimes, but so sometimes whenever, like, late at night, whenever she was dealing with a one family. Sometimes she just like, tells me like what's been going on with them. And my she kind of complained or not complain, but like, tells me what their problem is. Right. And I think it's kind of funny, but I mean, it's not funny. They do have a problem. But

Scott Benner 52:57
what do you think, Nancy?

Nancy 52:59
No, I was just thinking I was venting. Like, oh, why aren't they getting this? You know? Yeah,

Scott Benner 53:07
yeah, it's, um, I would say that one of the things I'm more proud of is, is you're being attacked. Zach, get out of the bed and lock the door. Oh, boy.

Unknown Speaker 53:21
Oh my gosh, excuse me. Hold

Scott Benner 53:22
off. Are you in Canada? Zack? What's going on? Zack, you're not Canadian. Are you? No, no. All right. Where do you get to? Where do you get a wolf from? What is that kind of dog? Is that

Zach 53:37
golden doodle? My dog is crazy. He is runs around slamming into like, the the couches, the table. Anything he can see. They don't

Scott Benner 53:53
tell you. The dog. Nope. What do they say? It's a hypoallergenic. Yeah, that's what they said doesn't shed.

Zach 54:03
That's exactly why we got it. My brother is allergic to dogs and cats.

Scott Benner 54:07
Oh, so Nancy, you get a dog that doesn't shed and is hypoallergenic but it runs into the furniture. What is it? What actually the dog was that? Zach said the dog runs into everything. It's crazy.

Nancy 54:22
Man's into everything. He does shed. The Shed. Yeah, well, we thought so too. But we paid a lot of money for a shedding dog.

Scott Benner 54:37
And it's got a stupid name. No offense. Other people have won. I mean, golden doodle. How do you say that with a straight face to people? It was that dog? Oh, it's a golden doodle. And he's black. Really? Yeah. Was he supposed to be another color? Did you did you I'm about to say did you buy him when he was black? I know he's alive. I'm supposed to say get him but did you? Did you? I don't know.

Nancy 54:59
Yeah. We picked him he was black, but his, the poodle in him is more black. So he just carried that trait but he's still golden retriever and poodle mix.

Scott Benner 55:14
My mom's poodle tried to bite me when I was a baby. She got rid of it right away. She's on my, on my team. You know that dog went right to the moon. I don't even know if they they put it in the trunk of a car and drove into a lake or something. It was. Oh, boy. It was the 70s Zach. You don't even you can kill people in the 70s didn't even matter. You're allowed to smoke in a restaurant in the 70s. Zach. Exactly. How many people do you know that smoke cigarettes?

Zach 55:41
Um, not many. Right? Not Not a lot,

Scott Benner 55:45
right? When I was your age, everyone I knew smoke cigarettes. adults, children, babies. Puppies didn't matter. Everyone had cigarettes. Now they don't. Can you imagine? Yeah. Sitting in a restaurant with like four people smoking at a table.

Nancy 56:03
Now they vape. So

Scott Benner 56:05
they do it interesting. They do it indoors? Well, no.

Nancy 56:09
I can't remember if vaping is illegal indoors to or not.

Scott Benner 56:15
Exactly. vaping. Or, you know, sec, what if I asked you a string of embarrassing questions in front of your mom right now? I won't do it. Don't worry. It's not a big deal. Thank you. Yeah, no problem. You got your eye on any ladies. Anything going on there? No, nothing? Not yet. No, you're thinking of the future? How you how you think it is? I'm sorry? I didn't mean to be presumptuous. In any guys. Anything like that? No, no. All right. Well, let me know if something pops up.

Zach 56:49
Okay, I'll email you.

Scott Benner 56:50
I think Yeah, send a note. That's a good idea. Because what I need is the government coming and finding an email from a 15 year old that tells me that he is interested in somebody, right? Because that won't look anything. Don't never email me. Zack, what are you talking about stopping?

Zach 57:05
Being sarcastic. I'm not going to email you about my relationship status.

Scott Benner 57:11
If you do, I'm calling your mom and I'm telling you there's something wrong with you. Okay. Nancy, is there any other autoimmune in your family?

Nancy 57:22
My husband has hypo thyroid.

Scott Benner 57:25
That's a yes. What else? We got? Hashimotos?

Nancy 57:29
I don't think so. No. I had like, my mother has hypo thyroid. And both of her parents had it. But no, nothing else that I can think of

Scott Benner 57:46
Zack, your thyroid works. Okay. Yes. Are you pretty sure.

Nancy 57:53
We just haven't checked? It's good.

Scott Benner 57:55
Sorry. Pretty sure. Is your you said brother, right. Brother is he does he think you believe Nancy? That he's concerned about diabetes or anything like that?

Nancy 58:10
No, I don't believe so. There have been over the course of five years, maybe once or twice that he's exhibited some sort of symptom. And I checked his blood sugar and he was completely fine. Also, we've done trial net several years ago, and he didn't have any of the markers. So I think he's, he's not worried about it.

Scott Benner 58:44
Any anger, there's act that it's you and not him?

Zach 58:51
Well, not really. I mean, I got some benefit from it that he didn't, but like, yeah, no, I, I don't really think that he deserved it. I don't think either of us deserved. Yeah,

Scott Benner 59:09
I did that stuck with me. I didn't expect you were gonna say yes. That actually if you just said yes, I would have signaled to your mom that you needed psychiatric care. But I just, I just wanted to get the answer from you. i i have the bigger ideas that that it's not a right, exactly. And I tell you a secret. I'm hoping I'm hoping that the people listening can hear that it's not such a big deal to you and that you're okay. Yeah, you know what I mean? And so that's why I'm asking you questions like that. Not so that you're not so that you'll but but if you have some deep dark secret, like, I mean, probably tell somebody you don't I mean, if you can't tell your mom tell another professional something like that. They used to be when I was a kid, tell them other adult but I gotta be honest with you. I've met a lot of adults. I don't think I would do that. Tell a teacher but then every day I turn on the news. There's a teacher like to have had sex with a kid and I'm like, I don't know. Like, how do I know it's not one of them when I'm telling them? You know what I mean? So, yeah, that many teachers do that. I'm not saying that. I'm saying hello, qualified professional if you have any problems, doctor, something like that. All right, Zach, you promise? Yeah. I think Zack and I are both sarcasm each other into a hole. What do you think of that?

Nancy 1:00:26
I think it's true. Yeah.

Scott Benner 1:00:28
Where do you where do you get this sarcasm from? Zack, I don't even know if people can read it. Yours is so tight and quiet. But is it from? Is it from your mom or your dad?

Zach 1:00:39
Ah, I'd say from my brother. But that's not true. Because it can't. But it's probably from my dad's side.

Nancy 1:00:47
You think Nancy is definitely definitely

Scott Benner 1:00:50
hard to be married to a sarcastic person. And so yes or no.

Nancy 1:00:54
At times, yes.

Scott Benner 1:00:57
Do you ever wonder sometimes, like, why is he joking about everything?

Nancy 1:01:01
Oh, it's so annoying at times.

Scott Benner 1:01:07
My wife's like, this isn't funny. I was like, well to you, because it's happening to you. But to the rest of us. It's hilarious. So just like you're ganging up on me, I'm like, You're the one that dropped the food on your shirt. Like, I don't know what you want us to do? Should we just sit here and pretend it didn't happen? You know what I mean? It's like, that's what you gotta do? Sack you bust your parents balls? Or how are you with that stuff?

Zach 1:01:29
Um, no, I? If, well, what? In what scenarios? All of like,

Scott Benner 1:01:38
oh, I don't know. I've raised my children to be so free with themselves. Like, I mean, other times when kids don't say anything. That'd be great. Maybe I should have done that instead.

Zach 1:01:47
Not not? Well, most of the time. I don't say anything. You just buy? Sometimes. Like if they like get on my nerves like my dad, if he makes us a really, really, really, really bad joke. Or like, it it just sometimes, but not, not really not really.

Scott Benner 1:02:08
Do you know it took my wife two years to stop doing this thing. My kids would come up to her with a video and say Mom, check this out. And my wife's first question was Who is that? And my kids would go Mom, I don't know everybody on the internet. And that was always how it went. I think they were trying to like but she always assumed that she was being shown a video of somebody that they knew is literally took her like two years to stop asking. And they were unmerciful on her about it like just there were times where I would see the phone go in her face. And they'd be like, Mom, check this out. And she'd go Who is that? And Arden will take the phone away and say never mind. Like you're not allowed. You're not allowed to look at it now. Like you like you blow you're not allowed to have it. Are you that harsh to your arm or no? No, no, he's not. He's not harsh. Gotcha. No. Well, that's you keep being a good boy. Zack, you understand me? Zack, let me ask you another question. If Lucy their exact disappear. Oh, wait. We killed Oh, I get it back sorry. Know what happened? You okay?

Zach 1:03:24
Yeah, my phone has this time limit thing on my apps. And it's

Scott Benner 1:03:31
Nancy. Zack, let's talk about that for a second. They have a time limit on your apps. They're limiting your usage. Yeah. Tell her how you feel about that.

Zach 1:03:44
Okay, mom? Yeah. I have something to tell you. Okay. He told me to say this.

Scott Benner 1:03:55
No, I did. Just tell her how you feel. I'm not putting words.

Zach 1:04:00
Okay, so it's kind of annoying that when everyone listening because

Scott Benner 1:04:11
the app cut him off again. That's hilarious. Oh, my gosh. That's hilarious. I think we should leave him off now. He's being punished and we should get now Nancy, tell me all the things you hate about that kid. Go ahead.

Nancy 1:04:25
Oh, my goodness. That's all the stuff is trying to protect my kid.

Scott Benner 1:04:29
What are you tried to keep them from the porn? What do you do in Exactly? Oh, hours enough time.

Nancy 1:04:37
Right. I'm just trying to get them to do some homework and not be on zoom all the time.

Scott Benner 1:04:43
I see. Oh, God, I think Arden would burn the house down if I did that. Oh gosh. Yeah. Would that be great if she was chatting with some boy or something or a friend and her phone just shut off? Oh my gosh, she'd come in a room with a stick and hit me. I just have to

Nancy 1:04:59
go Do you Do you want me to? He's in the room here now see that? Yeah. Let me see.

Scott Benner 1:05:06
Zack This is Can he hear me? No. Can you hear me for the headphones? Zack put these headphones on while your mouse clicks she can't hear us now while she's fixing your phone. Can you hear me? Okay? Yeah, I can hear you. Listen to me. This is insulting. You have to do something about this. Alright. You seem. You seem like a reasonable kid. I don't think you're using your phone for harm. This needs to be fixed. You got to get out off. Okay. I'm going to try to help you when we get back on Okay.

Zach 1:05:39
Okay. All right. All right. Thank

Scott Benner 1:05:40
you for the heads up. Or you fell off. He didn't hear that part. Okay. Sorry about that. You're doing the right thing. You're a good mom. Stop him from using the phone. But what? What age are we going to let him use it for longer?

Nancy 1:05:59
How long is it coming soon? I'm sure. Yeah.

Scott Benner 1:06:02
Well, now at what time? Is your phone cut you off?

Nancy 1:06:06
Well, definitely, you know, he's still in middle school. So he might get some more freedom when high school comes like his brother. And we'll see definitely before college.

Zach 1:06:27
Alright, shall I continue?

Scott Benner 1:06:29
Zach, tell your mom Hi. This makes you feel good.

Zach 1:06:32
Okay, kind of annoys me that like, right when I'm online or like I'm doing something like say I was playing a game. It just cuts me off. At any time. Sometimes I don't even know when. But like, I it just cuts me off. Like say I was in a call like now. I I'm just in the middle of a sentence I get cut off. Then I need to ask for time. But then, whenever I asked for time, it's I have to do something first. Okay, I'll do the thing. And then I get I get a little bit more time.

Scott Benner 1:07:09
Okay, you're not so I'm trying to do your friends mock you on mercifully about this. They treat you like lesser than because this happens to sometimes. Zack, have you ever been bullied about this? No, no. I'm glad you have.

Nancy 1:07:23
Yes. He has way more freedom than a lot of his friends. So I don't even want to hear it. Do

Scott Benner 1:07:29
you feel like that's true, Zach? No, no. Okay. Do you think that your mom's trying to protect you? Or do you think she's being over protective?

Zach 1:07:38
Both? Well, yeah. Both?

Scott Benner 1:07:41
What would you do with more time?

Zach 1:07:44
What would I do with more time?

Scott Benner 1:07:46
If you have more on your phone? What would you do with it? Oh,

Zach 1:07:49
if I had more time on my phone I mean, I wouldn't really do much. I if I had an hour. If I was on a call. At least it wouldn't cut me off.

Scott Benner 1:08:04
So it's more about freedom. You wouldn't start doing more things or extra stuff. You just would have some more freedom.

Zach 1:08:09
I mean, not really. No. Yeah. It's just a little more freedom. Yeah.

Scott Benner 1:08:13
What apps are you on? Are you on Instagram?

Zach 1:08:16
No, I don't have any social media. You don't have to

Scott Benner 1:08:19
tick tock? No. Oh, Zack. Is it because you don't want it? You're not allowed. Not allowed. It's a pretty big trend on tick tock right now, Zack. Here is I think you would like it. Oh, no. Just saying. Anyway, I don't think I can tell you about it. But a lot of people seem to be dancing without undergarments at this point. So yeah, it's crazy, man. This is what you're missing.

Nancy 1:08:52
That's just what we need more of

Scott Benner 1:08:56
think. No, I have to be honest with you. I'm at the point. Now I'm at the age where I'm like, I like my kids are like scrolling and I'm like, does anyone wear a bra at this point? And I told her is like not right now. And I was like, what she goes it's a it's a massive trend right now. And I was like, Oh my God. Wow. Like what are we doing Zach? Right. We don't want to see we wouldn't you know, you know I'm saying?

Zach 1:09:20
Yeah, now Tik Tok is off the list. Yeah.

Scott Benner 1:09:24
At all. Is there an app you wish you had that? that you think would be reasonable for you to have?

Zach 1:09:32
I get these two confused, but which one is the one where it doesn't have videos, but like, you can, like message your friends? What's it like?

Scott Benner 1:09:42
Is that WhatsApp?

Zach 1:09:45
It's the one between Instagram or Snapchat?

Scott Benner 1:09:48
It's Snapchat. Yeah. Who wants that?

Zach 1:09:53
Yeah, just that I wouldn't want like tick tock or Instagram.

Scott Benner 1:09:56
Nancy. Why can't he have Snapchat?

Nancy 1:09:59
I don't know. Okay, I'm going to figure out why he can't.

Scott Benner 1:10:02
When you look when you look into it, or will you just come up with a reason why it's a no,

Nancy 1:10:06
no, I mean, sure, I would look into it if I feel like he could be safe or I could secure it somehow, then I would consider it.

Scott Benner 1:10:18
And Zach, you just want to like have streaks with your friends, right? Yeah, yeah, Nancy, they just want to listen. They just want to hold their phone up to their face, take a picture of their forehead and send it to each other and see how many days in a row they can do it. That is exactly what they

Nancy 1:10:31
do. Cool. Oh my gosh. That sounds like so much fun. I'm keeping him from.

Scott Benner 1:10:38
You're stopping him from having a full life. Nancy of Santa Fe as far ahead pictures to his other stupid friends so they can send their forehead pictures back. I see how you're ruining everything.

Nancy 1:10:49
We have allowed. Zach what's Oh, Deviant Art. He Zack is an artist. Okay. And so he is allowed to post his art on this. I don't. I guess it's social media, because you're sharing your art. But yeah.

Scott Benner 1:11:10
All right. Well, Zach, what do you do you draw or paint? Or what do you do?

Zach 1:11:16
Yeah, I do illustrations. I usually do. Only pencil. But sometimes I do. Pen and I'm getting into digital art.

Scott Benner 1:11:26
Wow. That's very cool. Maybe your mom can send me something. So I can say it. Would that be alright, pick out one. Cool. And I have one more question before I ask you the kind of closing question which is how did you break your arm? Why are you in a cast?

Zach 1:11:42
Oh, um, so I was playing tennis with my dad and one of his work friends when they pushed you down? Yes, my dad was extremely mean and like, because we lost he pushed me down. Unbelievable. Now, so what happened was, the person we were playing against was, uh, he hit the ball to me. And I was supposed to hit it with a backhand. If you know what that is. It's where you're using your left hand.

Scott Benner 1:12:12
Don't stop me, Zack. I understand what a backhand is. Go ahead. Go ahead. Okay. Okay.

Zach 1:12:15
So I was supposed to hit a backhand back with, but I am really good with my right arm. So I'd wanted to do a forehand. So I was backing up extremely fast. And I tripped on my feet. And I fell backwards onto my hands. And right when I got up it like my hand was dangling in a really bad position. And my mom, right when she saw it, she knew it was broken because she saw like, white on this skin. Or like,

Scott Benner 1:12:50
was pressing. Yes. Yeah. Fun times how that feels.

Zach 1:12:55
Yeah, I felt like I was about to pass out, like get hurt a lot.

Scott Benner 1:12:59
They see his blood sugar shoot up immediately.

Nancy 1:13:02
Yeah, he got pretty hot. Well, he got into the 180s, which is unusual for him. And you know, we immediately went to urgent care. And then we had to go to the hospital. But he ended up having to get pins in his wrist because of the the way it broke. So still in the healing process, but it was really only that day that we had issues with his blood sugar.

Scott Benner 1:13:32
I came back after that. Okay. Yeah. Well, I hope that heals well, for you, Nancy, I'm gonna ask you, is there anything that we haven't talked about that you wish we would have?

Nancy 1:13:41
I don't think so. We did. Okay.

Scott Benner 1:13:42
Yeah, exactly. Do you have a good time?

Zach 1:13:46
Yes. Excellent. Other than the time cutting off, but like, yeah,

Scott Benner 1:13:51
that was hilarious. You have no idea. The second time it happened. Zack, you were in the middle of sticking up for yourself. You were like, here's why. We're just gone. I was like, that's perfect. i The part of me toyed with ending the podcast right there. Like how great would it be? If you started complaining, and then the podcast just ended and it was over?

Zach 1:14:10
That'd be great. That's

Scott Benner 1:14:11
what I shouldn't be perfect. But I kept talking to you. No, well, no, I screwed up. It's my it's my mistake. All right. I really appreciate you guys coming on and doing this. I'm thrilled that you're doing so well. And it sounds like you know, you guys are really kicking butt. It's fantastic. Thank you. Congratulations, man.

Nancy 1:14:31
I definitely appreciate you and I think it's awesome how many people you're helping and just keep keep doing it.

Scott Benner 1:14:39
Thank you. I will I my secret. You said you don't know how I do it earlier. My secret is I just promise ads to companies then I take their money and then I am I absolutely have to make a podcast then afterwards. It's No, I don't mean it like that. I mean, it's that it's a responsibility is helpful. You know what I mean? Like if it right, if it was just random, or I put one up once in a while or, you know, even once a week, you could probably get away with being lazy about it. But when it's a job, it's it's kind of good. It keeps you moving. So right, because everybody has days, they don't want to do something, but I don't I don't get that opportunity. So, right. I appreciate it very much.

Nancy 1:15:22
Okay. All right. So I do have to ask you, and maybe the opposite is gonna be personal. Oh, no, no. Well, it's about the World Series. So I don't know if you want to. Who are you reading for?

Scott Benner 1:15:34
Well, I mean, I'm a Phillies fan. So I'm absolutely mortified that the the Braves are in the World Series. Terrible. And if only they would spontaneously combust is the only way I could be. So wow, have the Braves winning the World Series, which by the way, it looks like they're going to do

Nancy 1:15:55
that was a pretty good game last night. Well, for

Scott Benner 1:15:57
you if you're a Braves fan. It was if you're an Astros fan. I have to be honest, if I'm really breaking down this World Series, which people are going to hear about six months after it happened. I'm a Phillies fan. Lifelong. I don't like seeing that, that anybody else in the division do well besides us, obviously. It's very cool to watch Adam Duvall play because he has type one. And I still think the Astros cheated and I want them to lose. So okay, I'm happy to see them.

Nancy 1:16:30
That you're rooting for them to lose, but not the Braves to win. I see.

Scott Benner 1:16:34
Honestly, I'm just watching them because they're baseball games. I love baseball. And these are the last potentially seven games of the year. So yeah, you know, but it was cool to see Duvall hit that homerun. He's having a really like a hell of a season. So yeah. So while I ask you, Zack, before you go, does that do anything for you to watch someone with type one on television accomplishing something at a high level?

Zach 1:16:57
Um, I mean, I so I don't watch the baseball games a lot. Because I'm not like a big sports watcher.

Scott Benner 1:17:07
Using the describe baseball, go ahead. The baseball game but any game in sports? I I put that aside, like Do you get any bump from that at all? Like, oh, that I heard last night a guy hit a homerun in the World Series. He has type one does it? Because here's my theory, Nancy. I think it means a lot to parents. Because I think they want to point to it for their kids. Like Look, baby, you meanwhile, Adam Duvall is one of 3000 professional baseball players in the world. None of us can do what he's doing. It's an absolute, like, just a randomness. You don't I mean, that he has diabetes is really cool. But I think it's a thing, generally speaking that parents use, and I understand why like to kind of give them their kids a little bolster. I don't know if their parents care. I don't know if the kids care. Like,

Nancy 1:17:59
I, I agree with you, you know, last night or not that last night, but they were watching one of the division games, and I mentioned it to Zach. And he was like, and, you know, yeah, so I but I kind of feel like it maybe has to do with the age of the kid? I don't know or how far they are into diagnosis. I'm not really sure. Yeah,

Scott Benner 1:18:22
I'm sure it's listen, I'm sure. For some people. It's really meaningful. I'm not I'm not saying that. I'm just saying that overwhelmingly online. You know, you see, parents are always asking, like, can you get on an athlete that has diabetes? Can you get on a famous person that has diabetes? Can I'm always like, Oh, no, like I rather I like talking to regular people better? Honestly, like sometimes. I mean, there's people I've jived with in the past. Sam folds been on a couple of times, and he's a former MLB player. And I just like Sam, I don't think it matters to me that he played baseball. And like, there's everybody's like, can you get them to all on the podcast? Like I be people cannot possibly ask me one more time about that. And there's part of me that's like, I could but I'm just gonna become like a baseball fan and talk to him about baseball for an hour. And you're gonna and you'll be surprised. I bet you you say to him, like, hey, how do you manage your diabetes? You'll be like, I just want my pump. It's not going to be some grand secret that he has that the rest of you don't have, you know, right. So, all right. Well, I appreciate you saying that. And I'm thank you for making me come out against the Braves on in a recording. It's fine. If I'm an adult, Zach, to be honest with you. I don't give a crap who wins the World Series? I just want to watch baseball, you know?

Zach 1:19:38
Yeah, I don't either. But I'll watch it.

Scott Benner 1:19:42
Yeah, I actually to be honest. Most of my life, like that's not how stuff occurs to me. You know, if I sit and watch a football game, you know, and the Eagles win. I'm like, Oh, the Eagles won. And if the Eagles lose, I go oh, the Eagles lost. I don't like it. I don't understand when sports that Other people are playing impacts you so greatly that you're upset by it or, like I was excited when the Eagles won the Super Bowl for like an hour. And then I was an adult, and then it was over. I was like, oh, yeah, well, that was fun. Anyway,

Nancy 1:20:13
yeah. I'm definitely getting into the series because we're from Atlanta, and I want to support the home team. But of course, everybody in this house is, Mom, why are you getting so into this game? You know, that sort of thing? But I'm usually I don't have to watch every game or anything like that.

Scott Benner 1:20:37
Oh, well, I'll let you make a prediction as a non like, God, who's gonna win the series and how many games to what?

Nancy 1:20:44
Of course, the Braves? Maybe four to one.

Scott Benner 1:20:51
Let's say it's not gonna happen.

Nancy 1:20:54
I'll cross my fingers

Scott Benner 1:20:55
World Series between two good teams. It'll least go six games. Really? Yep. And and 100%. This could. I mean, this could go seven. It really could if you know, I think you just got you got stuck last night where the Braves starting pitcher Charlie Morton came out and just was on fire and he shut the he shot the Astros down. The Braves put up a couple of points and you just it swings the wrong way. You got really good took a big hit because Charlie Morton broke his leg last night.

Nancy 1:21:27
I know, I saw that he was able to pitch like, I don't know.

Scott Benner 1:21:32
Couple more. And then he realized Yeah, terrible. Yeah. Pretty amazing work. So and he's an old guy. So he's gonna need every day to come back next year. Alright guys, thank you very much for doing this. Hold on one second. Okay. Okay.

Well, let me start off by thanking Zack and Nancy for coming on the program and sharing their story. I'd also like to thank Dexcom, makers of the Dexcom G six, and the Hello Dexcom program which you may be eligible for eligible anyway, you might be able to get it dexcom.com forward slash juice box, there's only one way to find out, hit the link. And to see if you're eligible for that free 30 day trial the Omni pod dash or to inquire about Omni pods other products like on the pod five, go to Omni pod.com forward slash juice box fill out the information, hit hit enter, send it over them, they'll call you back. You get started on the pod.com forward slash juice box.

If you're looking for my diabetes Pro Tip series, it begins at episode 210 In your podcast player, or you can find out more about it at diabetes pro tip.com juicebox podcast.com. We're in the featured section of the private Facebook group Juicebox Podcast type one diabetes. Perhaps you're looking for the defining diabetes series, The defining thyroid series variable series, how we eat after dark. Hmm, there's so many to choose from juicebox podcast.com Or just dig around that podcast player and find yourself a an episode and dig in. might love it. I use Digg twice, but I don't feel like re recording this. So that's how this is gonna stay. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#679 I Choose Leah

Amy's daughter Leah has type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 679 of the Juicebox Podcast.

On today's show I'll be speaking with Amy, she is the mother of Leah. Leah is the one with type one diabetes, and so many different things. I almost call this episode spicy child panic room. But in the end, I chose Lia. Please remember while you're listening, 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. We're becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox now and fill out the survey, the survey will take you fewer than 10 minutes and you will be helping people with type one diabetes. T one D exchange.org. Forward slash juice box. Spicy child there were a lot of good options in this one you'll see.

This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored today by us med you can get your diabetes supplies at US med us med always provides 90 days worth of supplies and fast free shipping. To find out more and get your free benefits check. Go to us med.com Ford slash juice box or call 888721151 For me, I didn't start the recording because we had to shut the thing down and start it back up again. I'm shooting Oh my God. All right. Oh, no.

Amy 2:19
Okay, or we can start over this

Scott Benner 2:21
does not happen often. You were doing so it's recording now. I am mortified. Hold on. No. No. Are you kidding? What if I wouldn't have looked up in the first couple of minutes? What if like an hour from now we were like, Oh my God. What did that mean? You're like, well, that's how your face ended up on the Washington. Yeah,

Amy 2:41
I'm not I'm not gonna call my child the demons seeds. So.

Scott Benner 2:47
Now this part has to stay in, so I'll beat that out. Don't worry. Okay, Amy, I'm trying to think of the best way to do this. I don't want to make you restyle

Amy 2:58
it's fine. I can shorten it a little bit. You know,

Scott Benner 3:00
I just I don't want to put you in a weird position where you're like, Oh, God, I just had this three seconds ago. Give me a second now. I'm I'm old. I my adrenaline's pumping. I just broke out like one of those little flop sweats. I was like, guys so disappointed in myself. Hold on. It's totally. I stare at this screen four to five times a week, and I watch it go past me and I'm looking at it and I'm like, What's it not doing that? It usually does? Oh, yeah. Recording. Okay, real quick. So I'm so embarrassed. Introduce yourself again.

Amy 3:35
I'm sorry. Okay, you ready?

Scott Benner 3:37
I am. Sarcasm maybe? No, no.

Amy 3:41
Not at all. All right. Okay. Hi. I'm Amy, and I'm a mom of three kids. I have a 16 year old daughter, 13 year old son, and a 10 year old daughter and she is my type one.

Scott Benner 3:57
Okay. Boy, I'm so irritated with myself right now. I gotta let it go. Let me shake my network. Let it go. Let it fall. Good. Do this one time. She looked very relaxed when it was over. But so it's probably easier for her to forget things. Don't you think? A billion dollars you can just shrug things off a little easier.

Amy 4:17
100%.

Scott Benner 4:18
So Leah was diagnosed last year during the summer? Yes. Is that correct? I do want to hear the part that you told me before. So you shared that since she's been a little kid. What did you tell me? Her teachers told you?

Amy 4:35
Yeah. So when Leah was in preschool, her first year of preschool, her three year old class went to pick her up one day and her teacher was like, I'm really worried about Leah. She's thirsty all the time. She's going to the bathroom all the time. That's a sign of diabetes. And I was like, Okay, and so I took her to the doctor. She's like, you know, you should get her checked. So I took her to the doctor and I said her preschool teacher thinks she has diabetes. So What do we need to do? And I had no clue. You know, I knew nothing about type one. And so, you know, my dad has type two, but I just wasn't, you know, anyway, so I knew it wasn't that. But so I took her to the doctor and they checked her urine and they're like, Nope, there's no glucose in her urine. She's fine. Everything's good. And then the next year and her four year old class, the other preschool teacher said, Leah's drinking and going to the bathroom all the time. And I was like, Well,

Scott Benner 5:31
last year, same preschool as the

Amy 5:34
Yeah, same preschool. Yeah. And so I took her to the doctor again, and they checked her urine, again, no glucose in the urine. They said she's fine. And then I want to say, at least one or two more times after that, I brought it up that she pees a lot and she drinks a lot, and she wets the bed a lot. And the doctor just kind of shrugged it off. And he was like, it's probably just behaviorally. Like she's too lazy to go to the bathroom. Like, I wasn't really and I just kind of accepted it. You know? I'm like, well, they they checked what they needed to check and I just kind of moved on. They never checked her blood, which in retrospect, I would have had them do. Um, well, then. Go ahead. Sorry,

Scott Benner 6:16
a behavioral thing, like so we're gonna get to it in a second. But Leah, streak in her. We're gonna call it for now. Right? She's,

Amy 6:24
she does. Yeah, I mean, I will say like, before she was diagnosed my husband and I would joke like, every day that she's alive, we lose a day of our life. We put her to bed at night. We're like, Oh, I just lost a day off the end. Because she, she's really before then. Before she was diagnosed, she was really, really difficult. And we had no idea why. But just really extreme mood swings, fighting with her siblings all the time. Like my first two kids. Like, I will honestly say, I cannot even remember them ever having to fight ever. Like they get along so well. And they're really easy to parent, great kids. And so I was just like, wow, we really the bed. I'm sorry, my lunch,

Scott Benner 7:17
if you want Sure.

Amy 7:19
And, you know, that's just kind of how I felt. I'm like, What did I do wrong? You know? And, yeah, so she's just always been really, really, I'll just say spicy, challenging, difficult.

Scott Benner 7:31
down to little things. Like if you said, Hey, can you throw me the remote? She'd be like, go to hell.

Amy 7:36
She would throw it out. No, she. I mean, she started like, you know, I mean, my older daughter has never said a cuss word never flipped me off. Never. But this one. I'd been I think she was like two or three. She would tell people she hated them. Sticking up her middle finger the wrong way. She would do it wrong. I was like, I'm gonna do it. How

Scott Benner 8:00
do you how do you do it wrong? She would like

Amy 8:02
hold her hands straight out and just stick out her middle finger straight out at me.

Scott Benner 8:07
Oh. Like she was the casting a spell on you. Like

Amy 8:11
that's what their middle finger? Yes. And so I was like, What did I do?

Scott Benner 8:21
You know, you went to a wedding and you drank too much apparently.

Amy 8:25
Well, you know what, what it was we had just moved into our house that we live in now. And it was like a three bedroom two bath. We're like oh my gosh, this house is so perfect. We have two kids three bedrooms.

Scott Benner 8:36
Bedroom got you or your husband? Did he do that thing? We should Chris in all the rooms in the house.

Amy 8:42
We didn't have cable for like two weeks. So that's what I blame it on. There was nothing else to do

Scott Benner 8:49
$200 and lost your sanity congratulate.

Amy 8:52
Oh my gosh. Oh, yeah. We've had to add on to our house like everything we had to get a bigger car because once you go to three kids it just you know you need a bigger car. You need a bigger house you need you know, and

Scott Benner 9:05
did the add on to the house for like a timeout room or a panic room we it goes off and everyone just runs to the panic room.

Amy 9:18
Yes, yes. Seriously? Oh my gosh.

Scott Benner 9:22
Even when she was like a little kid,

Amy 9:23
huh? You know, I will say she was the easiest baby like this sweetest, easiest baby. Super easy toddler. It was just once she hit three. So in my mind, I'm like wondering if and I don't even and of course the doctor is like, no way but I'm a touchy. I've had diabetes back then. And maybe just

Scott Benner 9:42
it's like, maybe like her blood. Yeah. Isn't fall.

Amy 9:46
Yeah. And maybe her she wasn't totally because even when she was diagnosed, she was she wasn't in DKA her agency was eight, you know? And she had she was not in DKA they sent me home you know Like after two hours, they sent us home. And then we had to go back the next day for training. But yeah, I mean, I just wonder if her pancreas has been kind of, you know, going in and out for years? I don't know. Yeah, it just makes me wonder.

Scott Benner 10:15
So in the spot where I wasn't recording, you told a great story about taking her to the doctor to get. Yes. So you didn't you didn't see you didn't sniff out diabetes. First, you sniffed out celiac first, you said because you have a friend whose children had celiac and it made you think about it. So they Yes. Tell me about that for a second.

Amy 10:36
Right. So you know, I was just noticing things about her where she was just after she would eat, she would say her stomach her. And she kind of looked like she was losing weight. And I would catch her eating like spoonfuls of sugar. And I was like, What is going on? And so to me, my mind went like, oh, like nutrient deficiency, which happens when you have celiac. And so my friend's daughter had been recently diagnosed. And we, like I said, we always follow the same pattern. Like she had a daughter, I had a daughter, she had a son, I listen, she had the third surprise, baby, I had the third surprise baby. So I'm like, Oh, your daughter got an autoimmune disease. Mine probably does, too. The only pattern we haven't followed is that her husband is gay now. I mean,

Unknown Speaker 11:24
hey, it ain't over yet.

Amy 11:29
We my kids joke. They're like, lose dad coming out.

Scott Benner 11:34
Get your friend, a lottery or something that would really by

Amy 11:36
No, I know. I'm like, I'm done copying you. Okay. Like,

Scott Benner 11:42
I want to immediately hang up with you and call her instead and talk to her all about that. I would love to hear about.

Amy 11:47
Oh, yes. Very interesting. But they're our best friends. And so yeah, we joke all the time. And, and she's like, Oh, it's never gonna come out with with, with Eric. It's not coming out even if he is

Scott Benner 12:00
your husband. Yes. She believes that even if your husband was gay, he wouldn't tell anyone. Right. I don't know. I hope he does. By the way. I mean, I don't. I don't hope he comes out. But I hope if he's living in a closeted life that he he

Amy 12:15
I would be I think I would be supportive. I don't know. No, I wouldn't

Scott Benner 12:20
be like, hey, what am I gonna do with all my life that I used up here? Yes. Yeah.

Amy 12:24
These 18 years exactly. Forget the gay part

Scott Benner 12:27
like any of it like I would. I'd be upset if Kelly walked and I'll tell you what Kelly said something to me one time broke my heart. She's broken my heart a number of times, but this one specifically. We're living you know, in a house

when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. G voc hypo pan is a ready to use glucagon option that can treat very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to G voc glucagon.com. Forward slash juicebox G voc shouldn't be used in patients with pheochromocytoma or insulinoma visit G voc glucagon.com/risk.

At this point, I would like to talk about us met, you get your diabetes supplies from somewhere. If the place you get them is anything like the place where I used to get them. It wasn't fun, we're easy and often would have been frustrating. But at US med it won't be us med accepts Medicare nationwide and over 800 private insurers they have an A plus rating with the Better Business Bureau and they want you to get better service and better care than what you're accustomed to. US med always provides 90 days worth of supplies and fast free shipping. They carry everything from insulin pumps and diabetes testing supplies to the latest and CGM like libre two and Dexcom G six. Get your free benefits check today at us med.com forward slash juice box or call 888-721-1514 There are links in the show notes of your podcast player and at juicebox podcast.com to G voc hypo Penn, us mad and all of the sponsors. And don't forget to go to T one D exchange.org Ford slash juice box and take that survey. You know we bought together and the plan back then was little tiny house bigger piece of land at a town where it's hard to get a hold of land. So we buy this little house and the plan is we're gonna just knock it over one day like we're young. We're in our 20s But you know what I mean? We're gonna take these grand ideas, and we're like we're gonna we're gonna knock the house over one day and we are going To build a new house overtop of it, and we're living there for a long time before we even, like make a tiny bit of money to, like, try to even consider that. And one day she says to me, I hate this house. I'm like, what? And she was I never wanted to move in here. I was like, Well, you could have mentioned that before we bought the house, then we wouldn't have bought it. And she's like, it just like I really had like, a weird feeling of loss. I feel like the feeling I had that day would be the exact same thing if she walked up to me and was like, Hey, I'm gay, by the way, and I gotta go. By Yeah, I'd be like, Oh my god, like, because it's that feeling of wasted time. I hate that feeling.

Amy 15:39
Yeah, ya know, for sure. Especially like all your good years, you know?

Scott Benner 15:45
I don't know if it's wasted. Well, no, that's a tough call isn't wasted time. I don't know. Listen, we're gonna go down the wrong rabbit

Amy 15:53
hole. Yeah, that's another podcast. Speaking wrong,

Scott Benner 15:56
but I appreciate it when the humor hits immediately. Okay, so we should absorb that one for just another second. That was funny. Take the kids to the doctor's office for celiac. But you say yes. Good,

Amy 16:18
right. So I was like I told my, you know, my husband had been in the middle of working like two weeks straight, like 12 hour shifts. And I said, like, you have to come I know you're tired. But like, you have to come with me because it's going to take two of us to get blood from Leah. You know? And it it turned out it took four so we we get there and I just know from past it's like when she would go to get shots. She would like hide under the table under the chairs. It was she

Scott Benner 16:47
was always does she does she get like this she start boxing or does she just like

Amy 16:53
she's more like a like a curled up rigid body. Like drag her out? Yes, she does a little rigor mortis. And, yeah, and it's crazy. I'm like, you're small. But when you go rigor mortis, it's really hard to lift them up on a table. So I just knew with her and especially just where her behavior was at that time. I mean, obviously she was feeling horrible. I didn't know why. And so it took me my husband, my 16 year old and the nurse we all had to like hold different limbs and body parts. Just to get the blood from her first during that. I think she cursed at us after in the car.

Scott Benner 17:40
She wouldn't in the public. Yeah, she didn't wanna do it in public, right?

Amy 17:43
No, no, she would never do it in front of people. But yeah, I'm pretty sure in the car. She threw some stuff at

Scott Benner 17:49
me. By the way to know where to do it.

Amy 17:53
Yeah, it's just like I said, I really? Wow. I don't know. So

Scott Benner 18:01
she noticed about herself. And back then do you think?

Amy 18:07
Yeah, like I think she she knows she was difficult. Yeah. And I think she realizes it was mostly because she just didn't feel good because I will say she's she's still Leah, but it's way better than it was back then. She's still she's still this there are still some similar things. It's just not as extreme you know. And my oh my kids laugh because on the Dexcom app I have a sweet Leah and they just think that's hilarious.

Scott Benner 18:37
Picked sweet because of the sugar aspect of you.

Amy 18:41
Yes. Definitely. And maybe I'm like maybe it'll just come true one day.

Scott Benner 18:49
Willard, but would you I'm in a will will are into it. But the other so the other two kids are kind of more mellow or do you think they just appear mellow next Alia?

Amy 18:58
Um, no, they're really good. I mean, I have no no complaints. My daughter My other daughter was hard when she was little. pretty challenging until she was about like nine and so we kept waiting. We're like, okay, when's Lea gonna grow out of this, you know? And, ya know, so the other two are way more and like I said, they never fight there, you know, but it's like Leah just kind of brings the house down. We know she fights with everybody. She's

Scott Benner 19:26
when I when I was younger. I used to say one day Arden's gonna make some lucky guy very unhappy.

Amy 19:33
Yes. That'll Delia to yes. But if you ask my husband, he'll be he'll always say like, mother like daughter.

Scott Benner 19:44
So okay, let's dig into that for a second. I mean, were you

Amy 19:48
I mean, you know, I'm feisty. I can be feisty for sure. And my husband's very laid back. So yeah, we're good. Good combo.

Scott Benner 19:59
When should pops off. Do you ever think like, oh, I said that when I was little too.

Amy 20:04
You know, I wasn't like that when I was little was more like teenage you know? Yes. No, I was a pretty, pretty sweet kid. I think, you know, my we had teen parents and there were four of us. My mom had four kids by the time she was 22 Holy hell. Yeah. So it was it was crazy. So there was really no room for me to be like that, who was gonna listen to me? You know, kind of put up with my,

Scott Benner 20:29
I don't want to go down this. I just need to know was that for Jesus or by mistake?

Amy 20:33
That I'm totally by mistake, like, yeah, it just kept coming. I couldn't

Scott Benner 20:39
figure out how her vagina worked for I. I was like, um, every time I use it, a baby comes out of it.

Amy 20:50
I don't know what is happening. Yeah. That was funny, you know, because with our third, we weren't trying. And the doctor was like, oh, like, how long have you guys been trying? I'm like, Well, no, we weren't. And he was like, Well, no, you know how babies are made? You were trying? I was like, Well, okay, I guess I would make a baby. Yeah,

Scott Benner 21:09
maybe you were more like not trying not to have a baby.

Amy 21:11
Right. Exactly. Okay. Exactly.

Scott Benner 21:15
To the kid you find with the pipeline in the middle of COVID. Right? Yes. Yeah. So do you think that changes how the hospital approaches you? Or what happened during Well, I

Amy 21:25
mean, okay, so I, you know, they did blood work on all three kids, but they didn't do a finger stick on her. So it was like bloodwork that they sent to the lab. And the doctor called me the next morning, and I was on my way to work. And he was like, everything's fine. Like, the kids don't have celiac. But Leah's blood sugar was really high. And I was like, Oh, okay. And I like what does that mean? Oh, my gosh, did what did she eat yesterday? You know, what I'm thinking in my head. I'm like, well, she did have a few spoonfuls of sugar for breakfast. I don't do it. I don't. So then he's like, you know, you need to bring her back in. So I was like, on my way to work, and then so, but while I'm on my way to work, then my dad calls me and my dad's a type two diabetic, he's in an assisted living facility. And he sounds really funny on the phone. And he's like, I remember, my face was swollen. It was like, and I'm like, okay, and I had just, you know, got off the phone with Leah's doctor. And so now I'm like, Okay, I go, Well, what do you mean, he's like, my mouth is swollen, and I have like a rash on my face. And I was like, what? And I'm like, okay, and I haven't been able to see my depth because of COVID. And, you know, we would go drop off stuff to him and see him through the window. And that was about it. And so I was like, Okay, I'm like, I pull over. I'm like, Dad, FaceTime me. Let me see. So we FaceTime and it was like, horrible. Like he had, like this weird rash on his face that was turning black. His face was completely swollen. And I'm like, what, like, I can't. Now I'm like, I'm like, Oh, my goodness. So then I was like, Okay, Dad, you need to go to the doctor. I'm going to call you back. So I like hang up with my dad. I call my sister and I'm like, and I think in my heart, I knew high blood sugar meant she has diabetes. You know, I'm like, I just knew it. And I called my sister and she lives up about six hours north of us. We live in Los Angeles. And I'm like, Angela, Leah's blood sugar is really high. Dad's face is falling off. Like, I need help. Like, I don't know what to do. So she was like, Oh, my God, okay, I'm coming. So she got in her car and just drove down. And she was like, I'll deal with Dad, you take care of Leah. So I got to work. And I told my co workers what was going on, and I'm like, I need to go. I told her the doctor, but Okay, bye. So I leave, I come home, pick my daughter up. And my husband was home. He was kind of like napping. But the other kids were here. And so I grabbed Leah, and I say, hey, like, you know, we gotta go back to the doctor. And, you know, they just kind of found something that they want to recheck. I didn't want to scare her, you know. And I was a little worried about going by myself, but thankfully, it was just a finger prick. And they took her blood again, and it was, you know, like 289. And, and they were like, what did she have for breakfast? And I was like, well, she had a smoothie and a spoonful of sugar or two pancreas. Yeah. And so he was very calm. And he was just like, you know, I think we're, we're catching something here, but it's early. So you're gonna have to just, you know, go to Children's Hospital, and I was like, oh, like, make an appointment. He's like, no, like, you need to go right now. And I'll call them let them know you're coming. And I was like, what?

Scott Benner 24:46
Don't want to do that because there's an impending zombie apocalypse my father.

Amy 24:52
Yeah. Okay, so then I go home and I wake up my husband and I knew what's COVID They're not gonna let him come with me. Ah, you know, and he had to go to work anyway. So it just woke him up and told them what was going on. And yeah, I mean, it was crazy. Like we went in there, there was nobody in the waiting room. They took us right back. And pretty much they didn't say it. Like she has type one diabetes, but, you know, it was it was pretty obvious, you know? So yeah, we were just there for two hours. And they sent us home and they said, Don't feed her any carbs tonight and come back tomorrow morning for training. So

Scott Benner 25:28
you know, of all the things I want to ask a question about you said your parents were young parents and your father was in an assisted living place. Why should How old is your dad?

Amy 25:36
He's really young. So he, he's 66. Now but he had a stroke when he was 47. He because he was a type two diabetic and he never took care of himself.

Scott Benner 25:47
I thought you're gonna everything early.

Amy 25:51
So and my mom and dad are divorced, obviously. Five. Yeah. Yeah. That didn't work out. Really? Shocker. Fascinating

Scott Benner 26:01
boiler alert.

Amy 26:02
Spoiler alert. They're not together anymore. But yeah, so he, he didn't take care of themselves. So he had a stroke at 47. So he's paralyzed on his website. And yeah, that's okay. And so he's just been in like nursing homes assisted living off and on. You know, since that happened, and yeah, so it turned out he had, he had shingles and the shingles rash, he scratched it and then got infected. And he also had an abscess tooth. So that's, that's what he had going on.

Scott Benner 26:39
I was gonna tell you that if your husband or when your husband comes out, if you're looking for a guy, I find you delightful. You should hunt me down. We'll see if Kelly's still here. But then I heard the rest of the story. And I was like, No. No. I don't need to help your dad with shingles.

Amy 26:59
And you don't want to be Leo stepdad either. I don't know.

Scott Benner 27:03
It'd be hilarious. I would just, I would team up with her and just pointed at you.

Amy 27:10
She, yeah. So my sister. Yeah. So she took care of him and ended up you know, he, he got on meds and they fixed. They pulled his tooth and He's okay. He's okay. Yeah.

Scott Benner 27:28
Okay. All right. So so how much of this? Did we ever have? COVID prior to this?

Amy 27:34
No, no, we never got it. I don't know how we were able to, you know, especially if my husband's job he got exposed a bunch of times that went around his office. And no, we were lucky. There was like one time where he did have like a direct exposure. And so I was like, I'm like, okay, and this was, I can't remember if it was before, after she got diagnosed, but I was, oh, it was after. And I said, Well, you better just stay in a hotel for a couple of days. And like, as I'm saying it he's already like booking his hotel and like, hey, wait a minute.

Scott Benner 28:06
I've been looking for an excuse to get the hell out of here.

Amy 28:10
I was like, Wait, why are you booking it? Like, wait a second.

Scott Benner 28:14
You want me to leave? And you're not going to be? Oh, sure. I gotta go. What was like,

Amy 28:21
oh, yeah, no, so she did not have COVID. Me. I

Scott Benner 28:24
just realized that before when we were talking. And I, you know, didn't record it. You mentioned your husband was in law enforcement. I just wanted to because he was asleep in the middle of the day, too. So yeah, we work shift work. And I think everyone else was like, Oh, God, guys just laying around the house.

Amy 28:40
No. Yeah. No, he was working a lot during that time. It was in the middle of the George Floyd protests and riots. So he was he was working 12 hours for two weeks straight. So yeah.

Scott Benner 28:53
Okay. So move. What do I want to say here? Oh, you did mention prior that there's a line of autoimmune stuff on your husband side. I just want to go over it. Celiac Hashimoto, motos, anything else?

Amy 29:07
I think that's an well type one now.

Scott Benner 29:10
Okay. Nothing on your side.

Amy 29:13
Now, we just have a lot of exciting. Yeah, we have a lot of type two diabetes, like on my dad's side of the family. So that's just always been my connection to diabetes, as you know, seeing my dad. And yeah, so we went to, you know, the next day after we were in the ER, they we went to Children's Hospital for training. And I think we were there for maybe five hours, but it was just like this total crash course you know, and they gave us like a bag of needles and a meter and some insulin and they were like, do this, this and this and then they wanted to have us give her a shot before we left but her blood sugar was in range. And so my first shot I had was like in the parking lot at Subway, and I totally made her bleed and hurt her and pretty sure she threw some things at me. Yeah, it was not good. And I just was like, Are you sure we can leave with her? Like I couldn't. I just was like,

Scott Benner 30:15
I was really on the edge to begin with. So now you're giving me another thing. And that is a, you know, a reasonable question to ask, right? I mean, if she was, if she was challenging, that's the right word. Right? Like if she was challenging to begin with. Did you? I mean, how many times did you think, Oh, it's this one. This one gets?

Amy 30:38
I was just gonna say that. I was just gonna say that. That was like, why her? Why that one?

Scott Benner 30:43
You know that you wished it was them?

Amy 30:47
I mean, you know, I kind of joked about it. It was just like, the three, it had to be this one. Okay.

Scott Benner 30:55
Okay, so Alright, let's really dig into the diabetes stuff. Yes. So after, you know, you settle a little bit. What did they send you home with? What did you have your needles and a meter? Yeah.

Amy 31:08
Um, pen needle, like a pen? And pen needles, a meter? Some Lantis? And some homologue? Okay. Yeah.

Scott Benner 31:17
How did you find learning about diabetes?

Amy 31:21
I mean, I was so overwhelmed. And so I had reached out, you know, like, I think a lot of my friends had heard, so everybody was like, Oh, I know somebody who has a kid. And so I called like, four different moms who all had kids with type one, and got some good advice, and maybe a couple not very good. But it was good. Like it, you know, so it just kind of made me feel a little more confident. And, you know, Children's Hospital was great, like keeping in touch and keeping in contact. But I think, you know, like you've said before, their whole advice was just like the the don't die advice. And not necessarily like, how is Leah going to be the healthiest? How is she going to feel the best? You know, it was just the, you know, the don't die don't. And so I think, and they said nothing about a pump or a glucose monitor or anything. I didn't know anything about that. And so I think my husband had heard from someone I don't know, he knew something about a glucose monitor. And they were like, oh, yeah, you can ask for that at your next appointment. Well, then I found your podcast. And I was like, oh, no, this is what she needs. So about, like two or three weeks in, I think I found your podcast. And I called right away. And I said, we want the Dexcom. And, and we had it within about like five or six weeks. And I was horrified. You know, seeing how high her blood sugar was going every time she ate. And you know, I called the nurse and they were like, yeah, like, that's what happens. I'm like, but how do we stop that from happening? She's like, you're just getting more information now. You know? And

Scott Benner 33:04
so you'd like So okay, so their, their reaction to you finally being able to see what was happening was, oh, yeah, it's always been a mess like this. But yeah, but nothing to do about it.

Amy 33:15
No, no, she's they were just again, it was that whole, like, we don't want her to go low. We don't want her. And I did a parent. So my friend who had the daughter with celiac, she had come to visit, they had a visit plan, like a week after she was diagnosed. And I was almost like, No, you guys can't come like I'm too overwhelmed. And then we decided, you know, it's fine, you know. And so they came. And so she had a friend who had a daughter who was an adult with type one. And I called her because it was just a situation where there's all these kids or six kids here, and they're just like, eating non stop. And they told me like, No, you can't give her insulin more than every two hours. And so of course, like we're watching a movie, they want popcorn, they want smores they want candy, and is just all the stuff was happening. And I'm like, No, I can't get a stack insulin. I can't, she has to wait two hours. And so I called her and she just was like, Well, you know, the way you have to see it as like a high blood sugar is not going to send you to the hospital. It's a low blood sugar. You know, so then I kind of got that in my head where it was like, Okay, let's keep her on a higher end, you know, but, like I said, I learned pretty quickly that that that wasn't right. And once we got her Dexcom and, and as I started listening to the podcast, I've been having to, you know, advocate for her with, you know, and it's like, I don't want to discount like the help that the nurses gave in the hospital and everything. But at the same time, it just was like she doesn't feel good, you know? Yeah. And well, you know, go ahead, sorry,

Scott Benner 34:53
Dorie, you're fine, you just you're very chatty, and I'm taking advantage of you and letting you talk. You give me be a very fun hour, and I don't have to do very much. It's great. Thank you. I feel like I should send you some of the ad money from this one. But I'm sure I won't do that me just I just wanted to okay, I feel like it, but it's not gonna happen. So I do want to know if, you know, when you get caught in that situation where you feel like, oh, gosh, they're, they're lovely people. And they're, they're really trying, but they're, they're wrong. But I don't want to tell them they're wrong. But I don't want to let my daughter continue on like this.

Amy 35:30
It's a tough spot. Yeah. How do you make sure to do I mean, I choose Leah, you know, I, and so I just started like, you know, giving her more insulin, but I was really afraid of it. At first, I was really afraid to make her go low. And she did honeymoon for a whole year. But we were able to get her agency down by her first appointment, her three month checkup to 6.1 on MDI, you know? Yeah, and this just kind of stayed there. We just so I just was like, no, like, I, I have to figure this out. Like, I can't let her sit at these high numbers. I've seen what high numbers can do to somebody, you know, like my dad. Yeah. And, you know,

Scott Benner 36:13
I let that happen again, no, and

Amy 36:15
I'm like, I'm not gonna kick the can down the road. And trade my fear, you know, for her health. You know, I just, I just couldn't do it. You know, I so I just, I just started making decisions on my own and increasing. You know, we and my husband was always on board, thankfully. And so, uh, he, he's more he was even more than me, like, Oh, he's like, I think we need to have her long acting. And, you know, so we just started kind of doing it on our own. And we would just tell them that we did it.

Scott Benner 36:45
Hey, yeah, microphones hitting your hair or your shirt.

Amy 36:48
Oh, sorry. Yeah, it's my hair. Sorry about that. Yeah, so we just started, you know, just kind of following, you know, stuff on the podcast and stuff on the Facebook page. And we, you know, she just started really, like her levels have just been really good. We just switched. She just got to Omni pod about five weeks ago, which is great. But we're still I'm still trying to figure that out. Now. Now. I feel kinda like I'm starting over. So it's been a little rough. And again, it's the same little battle with where they don't want to let me make adjustments. And so,

Scott Benner 37:27
so we started off with their advice. Went to yours, it got better switched. And then we back to their advice again.

Amy 37:35
Yeah, so now I am, you know, it's like for me, because it's a new thing. I'm trying to still figure it out. And, but I have, go ahead.

Scott Benner 37:43
So how was it?

Amy 37:46
Five weeks, or about five weeks? And yeah, so

Scott Benner 37:51
let me ask question. You were your husband, he, I know why you went to that hotel room so quick. He's like, I'm gonna go have a conversation with myself and see if I can get into yes, no, by the way, I'm teasing you. You are super chatty. It's just, it's perfect. I just need to jump in once a while we're not looking. We're not looking at each other. So it's harder to do. Now, now all that I'm gonna forget my freakin statement. Oh, okay. What what are you finding different about being on a pump versus on MDI?

Amy 38:25
I mean, I guess I Well, the things I love about it is being able to adjust the basals for the different times of day, but they were very conservative with it. And so, you know, they want me to wait, like three days before I make changes to anything. And, you know, and I just I know, better, you know, so, I'm start but at the same time, I also, I don't know all the functions of the pump yet. So I'm still trying to figure it out. And that's so it's hard. I'm,

Scott Benner 38:54
yeah, that's what I wanted to talk to you about, like, because there's nothing really different about it, like I know. I mean, it's, it's, you go into the Bazelon zone first. You either inject it once a day or twice a day, some people split, right. But you're just putting the insulin in. And so that's all the pumps doing, it's just putting it in, it's just putting it in in a different way. But you just go into the basil program and just, I mean, it's as simple as how much like what what, what basil was she using prior to the pump? Let's go for this.

Amy 39:25
Like the type? Yeah, what brand TriCity back. Okay.

Scott Benner 39:29
And how many units? Was

Amy 39:30
she getting a day? Um, we had her up to 10 when she was diagnosed, they had her at six and then we went all the way down to one because she was going low so much she honeymooned for a long time. Right? Then she, yeah, she was up to 10 units a day. So how many she getting through the pump? Like less than nine? So that's where I feel like I need to.

Scott Benner 39:52
I was gonna say is that is that like when she's stable and steady, like overnight, where she's sitting.

Amy 39:59
You know, she He's not state she's going high every night. And so we keep upping it from the night to three. And she's I think she's growing. She's going through puberty right now. So I feel like I almost need to double it because she's every night from midnight to three, she's going into the two hundreds.

Scott Benner 40:14
Okay, well, well, yeah. Well, let's try something.

Amy 40:17
I'm gonna try it.

Scott Benner 40:19
Yeah. But I'm trying to like dig into this one specific thought, like, you're a person who was doing it on their own. And you're making decisions. Not only were you making decisions, but you broke away from the idea of like, oh, this is what they're saying. It's hard to go against them. So you did it. What about moving to a pump? Made you go back to who you were in the beginning?

Amy 40:39
I think because I'm not familiar with it yet. Okay, you know, so I'm not 100% Confident. So and the I think that's it. So I just, I feel a little bit nervous about messing with things. Yeah. Because it's new,

Scott Benner 40:52
try just thinking of the pump as Basal insulin. And you can control the timeframes. So yeah, you know what I mean? And don't even worry about the, the number as much as like the strength like if, if she needs more certain time also, by the way, is she going up at midnight? Or is she going up? When is she going up?

Amy 41:11
Like literally at midnight? Every night, you need to start the Basal increase

Scott Benner 41:16
sooner then. Okay, so I will start at 11. And then then see, because you can't it's the same thing as a Bolus, right? Like, I mean, you know, you listen to the podcast. So yeah, you can't Bolus a meal and start eating at the same time. And you definitely can't change a Basal program. And at the exact moment when the impact is coming, right, because you need to pre Basal the impact, basically. And so Basal insulin, not only is, you know, it's a smaller amount, it's not going in all at once. So she's getting point six an hour. You know, and, like, right now, there's a little bit of insulin going in through her pump for her Basal, right, that, that bit that goes in right now is not impacting her right now. It's impacting her in, you know, 2030 4050 minutes from now, because they're little tiny bits. So you want to jack that basil up? I mean, I'm gonna say an hour to start, I bet you Jenny would say 90 minutes.

Amy 42:17
And but like, how much do I go up? Because they're only having to go up like point five, you know,

Scott Benner 42:23
how's that gonna help anything you should know? 200, right,

Amy 42:28
like, over 200, and I'm up, like, constantly correcting and then sometimes I'll just, like, give her like a Bolus, you know, just to try to get it down how much you Bolus thing in that timeframe? Um, I mean, it's like, I'm just up all night, trying to get it down.

Scott Benner 42:45
I mean, as much as mount, like, units, oh,

Amy 42:49
oh, in units. I'm just doing corrections. So whatever the correction will let me do and sometimes that won't let me so then I'll just put in, I'll just, I kind of do go back to what I know before. Like, okay, if she was 250, and we were on shots, I would give her two units. You know,

Scott Benner 43:05
this is, this isn't an algorithm. It's just the pump, right? So don't worry, ready? Nothing you hear the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician. Don't don't Yes. Don't worry about the insulin on board. Do what? Okay, but it says do what you know is right. Because insulin on board is a dumb. It's a dumb number, it's calculated. And if you're if it's set up incorrectly, it's not going to be right to begin with. And if you count the carbs incorrectly, it's not going to count. It's not going to work and getting a hormone impact. It's not going to work, but barebones. Somewhere in your pump, you've got setting set for how long insulin works in her body. And so if they I don't know, maybe they set that to six hours. It's two hours. Okay, so that's pretty. That's pretty short. That's so that. So it is set up to be a little more aggressive. So okay, yeah. All right. But to finish the thought, just for people listening, if the insulinoma if the insulin action time, I think that's what they call it on the pod, if that was set at six hours, that it makes this assumption that the insolence alive for six hours, if they set it for three hours, then it makes the assumption that it's alive for three hours, meaning that two hours into a meal, if it's set at three hours, it assumes it has less insulin on board. If it's set at six hours, it assumes it has more insulin on board, and then that impacts how much it wants you do to correct if they if it even thinks or corrections necessary. But yeah, okay, I would just and it sounds crazy, but I would use the pump, like injections in your mind. Like okay, don't worry about everything else, like just do what you know is right. And so my point is going to be if you're if you're correcting over those three hours with two units of insulin, first of all, are those two units bringing her back down and leveling her out? Yeah. Okay, so then I would just try to break the two units up into the Basal over the impact time of the hormones.

Amy 45:08
Okay. And I have done that like where I've done like an extended Bolus and just kind of done exactly what you said, but I want to do it. So it's automatic, you know?

Scott Benner 45:17
Yeah. Yeah. So she's getting point six now. You're gonna make me sit up. I'm so relaxed talking to you. I'm way back in my chair. The chair you guys bought me? Thank you so much. Oh, yeah. put a picture up on the Facebook page. And I said, I'm talking to Amy, I tagged you. And I was like, I'm having such a good time. To units, let's just divide it by you think you think the impact is ends around? Like three in the morning?

Amy 45:48
I feel like it's like three or four in the morning. And then she finally comes down. Yeah.

Scott Benner 45:51
So then what if you just, you take the two units, break it out over four hours, give her an extra half a unit for those four hours and see what happens. Okay, now, you might try it, you might have to end it sooner, like so just like we had to start it sooner, you may end up seeing the ended sooner. So, okay, you want to start the Bayes little 11? You know, we're going to try that for an impact at 12. And so if the impact disappears at two, or three, excuse me, you may want to stop the basil at two. Okay, so that by the time three o'clock comes around, and the impact is gone, we don't have a basil. That's too heavy. Okay, that makes sense. Yes.

Amy 46:33
Yeah, it does. Thank you. And I'm just,

Scott Benner 46:34
I'm just using your your number from your correction, like trying to get the correction into the base. Yeah.

Amy 46:39
No, that's, that makes sense that those corrections need to be part of her Basal. Yeah, you should try. I know. I just it's funny because like, once, I felt like I had it down with MDI. I was like, Okay, I'm going broke. I'm doing what I want to do. And I just think switching to the new technology. I was like, Oh, I don't know what I'm doing. I have to listen to everything. They say, I am a little bit, you know, like a people pleaser. So, I mean, not with my husband. I'll fight him on everything.

Scott Benner 47:08
No reason for him to be happy. But everyone else

Amy 47:11
know everybody else. I know. My husband will tell me he'll be like, talk to me. Like you're talking to one of your friends. We eats

Scott Benner 47:19
wheat? Or like, could you talk to us with your gas station voice please?

Amy 47:25
Yeah. Hi, I

Scott Benner 47:27
want to just fill this with AD seven. Oh, why? Nice to him? Never gonna see again. Never. Yeah,

Amy 47:34
I'm only 100. Yeah, that's about right. He's probably

Scott Benner 47:37
taking an impression of our credit card to buy furniture in Mongolia right now. And you you're being nice to him. And you've been to me in 10 years. That's great. Yes.

Amy 47:48
Yeah, so I just I do so I think I just because I'm not confident with it yet. It's just it's taking me a little bit of time to get that courage to just take it matters into my own hands. But yeah, when I see her not feeling well, not wanting to go to school, obviously, it makes me want to be a little more aggressive. So

Scott Benner 48:05
you know, you named the episode earlier. I did. I think it's gonna be called I choose Leah.

Amy 48:13
Oh, I do. Yeah. And, and I just And that's the thing. When I see her, her numbers steadier, her personality is completely different. And I think that's always like my motivation. Like, I want her to be the LEA. She's meant to be, you know, and so yes, I will. I will always choose her over what anybody is going to tell me.

Scott Benner 48:35
Yeah. So you're, you're, you're gonna figure this out and your actions will help her be happier, and probably save your life. If the earlier stories are accurate at all?

Amy 48:45
Yes, yeah. Maybe I'll give some days back to my plate. But yeah, I mean, it's just it's kind of crazy. Because everything I've learned with her, I'm now able to help my dad, even though he's type two. You know, we just recently I just recently I take care of my dad to like, if he has to go to the doctor, I take him and any kind of his appointments, I take him to everything. And his last doctor's appointment, his agency's kind of been sitting in the sevens and eights for a while, which, you know, I'd love to see it lower, but it jumped up to 10.8. And I was like, Okay, I've been in the fog of like taking care of Lea. And so now I'm like, Okay, I know, I know. I know what this means you need more insulin, right? He's an insulin dependent type two. And so I took him to the endocrinologist, they adjusted all his insulin. And while I was there, you know, my dad's on Medicare. I said, Hey, can he get a Dexcom? So they he got one, it was fully covered. And he's on the Dexcom now, and now my dad is seeing in real time when he eats a cookie, what happens to his blood sugar, you know? So his projected agency now since he's been on the Dexcom, is 6.5.

Scott Benner 49:53
Wow. So are you taking what you've learned from the podcast and it's helping him as well?

Amy 49:58
100% Yes. Oh, yes, absolutely. Because, yeah, I mean, it's like you're helping a type two and a type one.

Scott Benner 50:06
Oh, no, I that's really wonderful. I was Yeah, super excited. I mean, you know, I say things. I don't know if people listen. But, you know, like, even like, I slip it in the ad sometimes I'm like, if you're using insulin to get

Amy 50:19
Yeah. Well, and that, yeah. And that's the thing. So I went to his, his facility. And I was like, Well, how, you know, they, they printed out his blood sugar. They don't only check it three times a day. And he's taking probably close to 100 units of insulin a day. Wow. And I'm like, that's not enough. You know. And so I asked the doctor for a Dexcom. And you'd see his numbers. He's in the three and four hundreds all the time. And already now he's just oh my gosh, his line is so straight. I'm like, I'm so jealous. That's such a straight line. But he still has a somewhat working pancreas. But and he's done a couple of times. What's our

Scott Benner 50:56
view on any Basal insulin?

Amy 50:58
Yeah, so he takes, he takes 35 units of basil twice a day, and then he gets insulin, a fast acting for his meals. Wow. Okay. And, yeah, so but the last week, he went low, he was in the 40s. And I called him and I'm like, Dad, are you feeling okay? And he was like, what I go, your blood sugar is really low right now. Are you okay? And he was like, Oh, I didn't eat my lunch. I'm like, but they gave you insulin, right? And he's like, yeah, man, get going. I said, You need to have a good tea, don't eat a cookie, go eat some candy. And so it's happened a couple of times where I've seen his blood sugar dip low. Because he'll just he doesn't eat but it's good. Because he's changed what he eats for breakfast. He's completely changed because he's seen what it does on Sunday. He ate a cookie, his blood sugar went to like 300. And he called me he's like, I'm sorry, I ate a cookie. It's okay.

Scott Benner 51:54
So it's changing his habits to

Amy 51:57
it is because he's seeing it in real time. What's happening? And it's great. Yeah. And I mean, it's just, you know, it sucks that Leah has diabetes. And, you know, it sucks that he has type two, but I'm just so glad I'm able to help both of them. Me too. You know? Yeah,

Scott Benner 52:13
yeah. Wonderful. Wow. Good for you. That's actually you weren't? Well, I take it back. Maybe now. When your husband comes out, I will call you because, yeah, that was really lovely. Plus, I need somebody to help me with my mom. So I'm

Amy 52:25
sure Okay, I am a caretaker. That is my, you know, I do I like to take care of people for sure.

Scott Benner 52:31
has, as the diagnosis caused you, like you said, you kind of lost track your Dad, is it hard with the other two kids?

Amy 52:42
Um, you know, they're so great. Like, they're so supportive. And, and we do, like, my husband and I, like, our kids are everything. And so we do. Like my husband, coaches, my son's baseball team. So they spend a lot of time together. And my older daughter, I, you know, try to spend so we do try to like, balance it all out. But it was hard, especially when Leah was being so challenging. And so we actually worked with Erica for a little bit. And because we're in California, so we were able to, to have some sessions with Erica and that was really helpful as a family and then individually with Leah. So

Scott Benner 53:21
while this podcast is pretty damn helpful.

Amy 53:24
Yeah. And yeah, so

Scott Benner 53:27
I have Erica, like I've ever got on my, my calendar next week.

Amy 53:31
Yeah, she's amazing. And it was great. Like, we did one as a family. And, you know, I think my husband in the beginning was, it is just like, my husband's a type of guy. Like he, like, he'll

watch a Disney movie, he cries, you know, and when Leah got diagnosed, I mean, I cried for a month. You know, I was just,

I was devastated. You know, because my kids have always been healthy. I've always had healthy kids. And, you know, I've always kind of almost been like, proud of that, like, I have some kind of superior genetics or something. I don't know

Unknown Speaker 54:01
what I've done. But what

Amy 54:04
I remember my daughter had a friend she had a couple friends that were allergic to dogs and we have dogs and I'm like, can you stop making friends that have allergies please?

Scott Benner 54:12
Let's say I'm bringing these weak kids into the house. I know

Amy 54:15
that these weak immune systems Yeah, and so I just kind of it so it really you know, nothing humbles you more than being put through something like this and having you know, now I'm just so sensitive to like, celiac and peanut allergies and everything where I think you know, before I just didn't really think about it much and I would kind of be annoyed by it. And it really it really humbled me quite a bit and you know, I just Anyway, are you gonna cry? No.

Scott Benner 54:52
She need help her she crying

Amy 54:56
but it didn't know I do. I feel a little emotional about it. But um, It really did humbled me for sure. And I forgot what I was going to say. But

Scott Benner 55:06
you probably want to apologize for making fun of people with allergies is what I was.

Amy 55:10
Yeah, I mean, for sure. And yeah, and oh, what I was gonna say was that, you know, so when that happened, I was really upset. And then my husband just like, never cried. And I was like, What's wrong with you? Like, why aren't you sad about this? And he was, he did try to kind of be like, Oh, you're so good at it, you do everything. And I was like, No, I can't be the only one who knows how to take care of her because we have other kids. And, you know, I like I need to spend time with other kids and or take them to do things. And so you need to be able to take care of her too. And so he didn't, he was afraid it was hard for him to put a needle in his child and, but he did it and he helps a lot. Now he's very involved. And it was, but anyway, we had a session with Erica and and again, I just think like it, it was hard, because I felt like he didn't, he didn't feel it the same way I did. And we had our session with her and she kind of like went around and asked everybody, you know, how they felt when Leah was diagnosed, and then he, he totally cried, and then we all started crying. We were all on different computers in the house, you know, and, and all of us is just like, so it was good. And it was good to hear how my kids felt about it. You know, the other kids and how they took it in? And what's

Scott Benner 56:24
different for each of them?

Amy 56:27
Um, yeah, I think, you know, like my son, he was so sweet. He was just like, you know, oh, I just only knew my grandpa had type two diabetes, and I, I really didn't understand it. And he's like, I just feel I feel really bad for her. And, you know, he's 12 At the time, and he's like, I just want to learn how to, like, give her shots and take care of her. And he was so cute. And, and he was like, you know, sometimes we ride our bikes home from school, like, I want to be able to go like, get food with her and be able to give her a shot. And, and Erica was just like, I'm so touched hearing that, Charles. Like, that's so sweet. And then she's like, Leah, how does it make you feel to hear your brother say that? And she's like,

Scott Benner 57:04
I guess what she said? Yeah, can I guess what she said? What did she say? Yeah, that kids?

Amy 57:12
Pretty much. Um, yeah, I mean, I guess that's nice. You know, cuz sometimes I'm hungry on the way home from school. It's just like this touching moment. And she was like, Yeah, I don't care. Yes. And she's really mean. What? One of our sessions with Erica, it was just me, Eric and Leah. And she was in her room on her device. And my husband, you know, he hasn't mastered the zoom. Okay. This zoom, kind of had it on a bad angle. You know, he kind of had a double chin, you know, on display. And she just sent him a text message that said, nice chin therapy. Tech says message that says nice chin. Yeah, she's She's charming. Charming, ya know, so it's been so helpful. And I just I feel like I owe you so much. Because, yeah, I mean, our whole family is better because of it. You know, including my dad.

Scott Benner 58:21
Happy to hear that. Thank you for telling me. That's wonderful. Yeah.

Amy 58:23
Yeah, for sure. I,

Scott Benner 58:26
I don't know what to say usually. So I'm going to try not to say something silly, and just say thank you. But you're welcome. Very. It's a humbling like, I try not to say things that I think people think sound just cliched. But you want to try sitting over here and having someone tell you that story. And then thank you at the end of it. It's, it's hard to absorb. So

Amy 58:49
yeah, well absorb it. Cuz I just I don't I just I'm like, what would I Where would we be? Had I not found your podcast? I don't even want to know. Do you know, I don't even want to know.

Scott Benner 59:01
Do you know that this week, has my mom's having a health issue. And I didn't feel like that she was getting the care she needed through the doctor that she basically landed on when she was at the hospital. So I looked at our our options for how to get her a second opinion. And they were all you know, like call the cold call and office and tell a story and hope a doctor was interested. And then I was telling my neighbor about it. And her son had grown up to be a surgeon. And she's like, why don't you call him and see, you know if he knows anybody. So I texted him. And it turns out he went to medical school with a doctor who is the exact kind of doctor that my mom would meet. So she he texted his friend, his friend then called a mentor. And yesterday, the mentors office reached out and treated us so much better than my mom has been treated so far. You know, which sucks. I'm not gonna lie like it sucks. It's like the you need to know somebody to get treated. Yeah, you know, but yeah, but it's, it's happening, right? And I text him to thank him. And I sent him a very thoughtful text and it, you know, I'm telling him how much of an impact he's made. And I'm thanking him. And he responds, it's no trouble. So I was happy to do it. And I was immediately like, No, man, you don't understand. Like, you can't just say no trouble. I'm happy to do it. This is a really big deal. My mom's been, you know, my mom's happy for the first time and months. My family feels relief for the first time in a long time like this is I'm so I'm now trying to explain to him what a big deal is. And as I'm explaining it to him, I'm thinking, Oh, this is what I do to people. They tell me, they tell me something. And they thank me and I go, it's no trouble. Don't worry about Yeah. Damn, I got mad at myself. I was like, I gotta stop doing that. But I don't know

Amy 1:01:07
what Yeah, it's hard. Yeah, I know, it's hard, because you still want to remain humble. But at the same time, you know, it's

Scott Benner 1:01:16
not even that it's, it's, I mean, I made the thing it's recorded. So we keeps helping people. It's not like, I have to do it over and over again to help them. Do you know what I mean? Like, I talked to you once, if something valuable gets set in this hour, which is 100%. Sure, we did. But maybe we didn't talk about the diesel thing overnight. So that might be okay. But you know, somebody takes something from this episode. And it helps them it'll, then and this episode gets downloaded, you know, a lot. And then it helps all those other people. My effort only happen once. You know what I mean? And so it's hard to feel like, I don't know, you know, if 10s of 1000s of people tell you something, but you only did something once for them to all get that reaction. It doesn't feel like are my effort is equal to their. To their thanks. I don't know, to their appreciation. Yeah. And, um, I know, it's a weird thing, but I really do like hearing it. And I appreciate knowing

Amy 1:02:20
ya know, we're I just like I said, because a lot of the advice I got was the, like you've said before the don't die advice, which is great. And I don't want that to happen. But I would have never been able to help her the way I have. Had I not found it. Yeah. And not only her health but emotionally because then we found Erica, so Right.

Scott Benner 1:02:44
No, and yeah, and their behavior to like, I know, yes. Still, like spirited, but she says, yeah, she's not like flipping you off anymore.

Amy 1:02:53
I mean, oh, yes. When we got her her pump, I put a picture of it on the page. But when she got her pump, I was like, oh, Leah, let me take a picture of you with your pump and I'll send it to grandma.

Scott Benner 1:03:03
Oh, she's the one that flipped you off in the pie. Remember that picture?

Amy 1:03:05
Yes. Yeah, she flipped me off. But that was just like, yeah, that was more fun. But yeah. Oh, and she's told me like, she does not identify where her diabetes. You know what I mean? Like, she's fine with talking about it. But she's not like, I'm a type one where you're like, that is so not her personality at all. And she told me if I ever were a type one where your mom t shirt that she would set it on fire while I'm wearing it. So

Scott Benner 1:03:34
that kid's gonna kill you.

Amy 1:03:35
She is yes. Somehow. Slowly, slowly over time, or yet or just one day? Yeah.

Scott Benner 1:03:43
Kelly, why don't you just smother me with a pillow? Wouldn't it be quicker? Why are you torture me like this? Just we just get this done, please. It's just the this this water torture thing is taking forever. Like

Amy 1:04:01
I know My poor husband, too. He's got all these feisty girls in the house. There's three of us. So He said that once. We're all like synced up with our cycles that he and my son are going to leave town every month during that time. So

Scott Benner 1:04:15
I've never been so delighted as how you describe him running to the to the hotel when you were like

Amy 1:04:22
it was like as I was saying it was already booked. I'm like, Oh,

Scott Benner 1:04:26
should I use Travelocity or the one with the

Amy 1:04:30
oh my gosh, it was so funny. To look

Scott Benner 1:04:33
at the sun and go see a sucker.

Amy 1:04:35
I know. Sorry. Don't want to give you COVID

Scott Benner 1:04:39
Oh, it's a shame you're gonna have to say I gotta go goodbye. Three days he's probably

Amy 1:04:46
Oh yeah, eating cookie dough. Yeah, see what

Scott Benner 1:04:51
Well, it means there anything that we haven't talked about that we should have?

Amy 1:04:55
No, I'm just thank you for helping me with the competence again. cuz I just I felt like I did I have lost a little confidence since switching to the pump. So I'm trying to, to get that back, but I love it. You know, I mean, it's amazing. We were giving her, you know, 12 shots a day sometimes. So wow, this is an especially with a difficult child like her there was some running around pinning her down, you know? So but I'm like, I will not like up high

Scott Benner 1:05:28
like flopped on top of Ronda. So Oh, yeah.

Amy 1:05:32
Very accurate. And it's the same with like, you know, the Dexcom, you know, and some of the advice that I've been given by people is like, Oh, well set a timer. And, you know, and then tell her Okay, it's time now. And I'm like, that's not going to work. Like, I'll set the timer for five minutes, and she's still not gonna let me do it. So,

Scott Benner 1:05:50
to do these things, like sneaking up on a wild animal, you just throw it back over her head?

Amy 1:05:54
Yes. Yeah, seriously. And so it's just like that. Dexcom you know how, you know, you stick it on? And then that sometimes she'll be like, no, wait, wait, wait. And I'm like, No, I'm not waiting. And I'll just, I'll just do it. And I know, maybe that's not in the parenting books and or whatever. But I'm like, no, she will literally walk around with that thing hanging on her arm. She will do the long game, she will walk around for days, and never let me inject it. So I just know. I just have

Scott Benner 1:06:23
to do it. So I think the waiting just builds the anxiety. Honestly, it does. Yeah,

Amy 1:06:27
it does. And I just do it. And she might, you know, get a little combative. But you know, then it's done. And you know, we move

Scott Benner 1:06:34
on? I'm I have to I have to tell you be honest. I'm a proponent of do it quick.

Amy 1:06:40
Yeah, yeah, I just know her, you know,

Scott Benner 1:06:44
but even when people take off their devices, and sometimes I see them and like soaking them and stuff. Like why like to get it nice and wet. You know, I know some people have skin issues where pulling it off quickly really does mess with them. But Arden we just like peel up a corner and I'm like, you're ready. She goes. Yeah. And I hold her skin down with one hand like, I just Oh, wow. It doesn't feel great. But it's over and then it stops hurting. And that's it. Yeah. You know, I mean, I don't know. Like if you want to soak, you know, you want to soak your pod for an hour before you pull it off. Like it's cool with me like I don't I don't have time for that. I don't care that we do it. We're just like ripping go.

Amy 1:07:22
Yeah, I also did a little bit but now we we don't wait more than a couple of minutes. I'm like, Nope. Okay, it's coming off now. So I just I just don't and I know her and it doesn't matter how patient I am. She's never going to be ready. You know, she's never going to be like, okay, Mom, you can take money. You can inject it now or you can take it off. Now. You just have to. You just have to get it done.

Scott Benner 1:07:43
And one more second. One more. So hold on. Hold on. Hold on. Hold on. Wait, wait, wait, wait, wait, wait, wait, why are we waiting? Just wait one second like that. It just goes on forever.

Amy 1:07:49
Right? Yeah. Oh, totally. Yeah. 100%.

Scott Benner 1:07:53
I've lived through that once or twice. Okay. My son was taking a pill when he was a little kid. Holy crap. I still my wife and I are traumatized by one time. We just were hours in the kitchen. Like just swallow the pill. Oh, my father, like retired, like you'll feel better if you just he was little, you know, and he says I don't want to do it and I shut up and to swallow the pill. And he fought for ever. And then finally did it like an hour later. He's like, my head feels better than we were likely. Gonna Majan that. Okay. Thanks. All right. All right, Amy. I'm gonna let you go. And I'm gonna delete out all the cursing that we did.

Amy 1:08:32
Yes, I'm sorry. Everybody knows.

Scott Benner 1:08:35
I curse the biggest curse. Don't worry about all right. Do not remember.

Amy 1:08:40
I you know I? I said I think yes, that's right. That's right. Yes. That's

Scott Benner 1:08:45
got to come out. That has to come out. Yeah. Well, I imagine. I can imagine your daughter saying it. So

Amy 1:08:52
she calls him a little bit all the time. She tells him he's a little and she tells him he's never gonna move out. She's been and he's so nice to her

Scott Benner 1:09:05
because she gets older and she started saying stuff like girls aren't gonna go out with you and

Amy 1:09:09
oh, she's Yeah, she's very mean. But he's thankfully he. He's pretty good about ignoring it.

Scott Benner 1:09:17
Alright, listen, if your friend ever wants to come on and talk about her husband coming out, I don't care that it doesn't

Amy 1:09:24
it's an interesting story for sure. And I'll let you know if my husband ever does. I'll keep you posted for

Scott Benner 1:09:29
when I hear you. Okay. Hold on. Let's take care you to

a huge thank you to one of today's sponsors, GE voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEG l u c h GE o n.com forward slash juicebox. I'd also like to thank Amy for coming on the show and sharing her story. And us med for sponsoring this episode. Go to us med.com Ford slash juice box or call 888-721-1514 Get your free benefits check get started with us med if you're enjoying the Juicebox Podcast, please share it with someone else who you think might also enjoy it. And if they don't know about podcast, take their phone from them and show them be like here. Download this, do this search for that. Listen here. Some people need help. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#678 After Dark: Nolan's Story

Jen has type 1 diabetes and is here to tell Nolan's Story of addiction, mental illness and overdosing.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 678 of the Juicebox Podcast.

On today's episode of The Juicebox Podcast we have another in the after dark series. I'll be speaking today with Jen who has type one diabetes, and is the mother of three children. Her son Nolan had type one diabetes, and he also struggled with addiction. Jen does a very brave thing today sharing Nolan's story with all of us. And I'd like to thank her right now, for what must have been a very difficult hour. She was honest and open, as she discussed Nolan's life and his struggles. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you are a US resident who has type one diabetes, or is the caregiver of someone with type one, spending a few minutes today at T one D exchange.org. Forward slash juicebox. Taking their survey will help people with type one diabetes, T one D exchange.org. Forward slash juicebox. Take the survey

this episode of The Juicebox Podcast is sponsored by touched by type one, a wonderful organization doing amazing things for people with type one diabetes, learn more about them on their Instagram page, their Facebook page, or at touched by type one.org. The podcast is also sponsored by the Contour Next One blood glucose meter. Learn more Get started today. Or just buy the thing at contour next one.com forward slash juice box. My daughter's meter is a great meter. And I think you're gonna like it to contour next one.com forward slash juice box.

Jen 2:11
Hello, my name is Jen. I am a type one diabetic and the mother of a recently deceased type one diabetic.

Scott Benner 2:18
Okay, Jen, I know you from the private Facebook group. Yes. How long have you been in that space?

Jen 2:28
In the private Facebook group? Gosh, probably less probably about a year. Okay. We not that. Yeah.

Scott Benner 2:35
Yeah, not not all that long. The group might not even be like two and a half years old. So you could have been there for a very long time. And it not been that long. On the calendar. I guess that my I'd like to ask you a little bit about yourself first, I guess. How old are you now? And how old are you? Where are you when you were diagnosed?

Jen 2:57
So I was I'm 48 years old now. And I was diagnosed around age 40. I have what they call led a diabetes. I had a very slow onset, they thought that I was a type two until I almost died. Well, one doctor knew that I was the type one. He tested me for the autoimmune antibody. And I had that. And so he diagnosed me as type one. And I was proud 4041 When that happened

Scott Benner 3:34
prior to that, were you struggling with diabetes and nobody had tested you.

Jen 3:39
You know, I had I had gestational diabetes. And no, I hadn't had it really tested other than the gestational. My sugar stayed high. After I had my baby. We don't really know how long I had I sugars. But I was having trouble with getting infections. I got pinkeye maybe 20 times. And I wouldn't I just kept getting pinkeye. And so they checked me and started me on Metformin, which did not do anything and I just continued to get sicker and sicker. Put me on a couple of other type two medications. And then I went into the UK and had to have I got cholecystitis, which means my gallbladder had gall stones. And I had to have my gallbladder out. And they found out that I was a type one. So they did they finally did a fasting C peptide and checking in those type one

Scott Benner 4:41
from this. Oh, I'm sorry. I didn't mean to cut you off. Nope, that's okay. Go ahead. I was gonna say from the time that you began to not feel well. From I guess the question is, from the time you were gestational till the time you realize something was wrong was how long? About five years? You're okay. And then from that time until somebody told you you had Lada How long was that?

Jen 5:08
I'm sorry. So it was about it was not feeling well continued after I had my child, my youngest. And it was about five years until they said that I have IDs.

Scott Benner 5:19
I see. Okay. All right, Jen. I hate to say this because we went through so much trouble before we started, but I don't know if I like the headphones. I might. I might try without I might just ask you to go through the phone. Yeah.

Jen 5:34
Okay, one moment, okay. Is not a problem now. Thank you. I gotta turn them off. Hold on a second. Okay, how's that?

Scott Benner 5:49
Yeah, it's probably going to be better than the headphones straight in your longer sentences. They strain. I don't know how to put that other than when you speak more than a few words. Your, your, your ladder words in those sentences start to kind of drift away. So okay, yeah,

Jen 6:05
just just a moment. Now, is it better now like this? Yeah, you're

Scott Benner 6:09
fine like that. Okay. So I'll keep it off speaker

Jen 6:12
and on the phone. Okay, thanks. Yeah,

Scott Benner 6:16
it just sucks because you've got to be cognizant of your hair, not touching the phone and like all kinds of little things that make noises, like whatever that is, and like, you know, that kind of stuff. So just do your best to find a spot where you're comfortable. Okay, okay. So you this all happen after your youngest. So how many children have you had?

Jen 6:35
I have three children? Three. I had Nolan, Patrick and lemon is my youngest. What are their ages? So lemon is 13. Patrick is 21. And Nolan passed at age 24. Just a couple of weeks after his 24th birthday.

Scott Benner 6:52
Oh, one right after his 24th Okay. And you were about 24 When you had Nolan.

Jen 6:58
Yep. I was 23. Okay.

Scott Benner 7:02
So you have type one diabetes. Am had no one been diagnosed at this point yet?

Jen 7:10
Yeah, he was he was diagnosed before I was he was diagnosed at age seven. Okay. And yeah, I think if he hadn't been diagnosed, I likely would not have even gone to the doctor for what was going on with me. I would have just chalked it up to being old.

Scott Benner 7:26
being old. I don't know. I don't know how old you are. 3030 some years old. But I hear what you're saying. Well,

Jen 7:31
but with the first time you're 30, you don't know what it's like to be 30.

Scott Benner 7:35
Yeah. So no, I understand. I just would have seen like, oh, I guess this is the path of my health. And right, that's right. I understand. So let's talk a little bit about when Owen was diagnosed, how did you figure that out?

Jen 7:51
Well, that was interesting. He was he was getting infections that wouldn't go away. And I'd taken them to the pediatrician. Oh, gosh, it seems like every other week, I was in nursing school. And I remember, I just took him to the pediatrician so much because he had sinus infections. And then he had this big, swollen parotid gland. So that's right on your jawbone. And he just had his face was uneven. And so I took him in. And they said, well, hmm, I don't know. I don't know what this is. And we did some blood work. He did like a complete blood count. He didn't do a sugar. He didn't do a metabolic panel, otherwise, we would have known. And then I took him and he sent me over to an en te to look at the parotid while the en eyes went to two different un and T's because one was just kind of a mean guy, and I didn't like him. And the other wanted to operate on him right away. And by that time, I was in nursing school, and we were learning a little bit about diabetes. And by that time, Nolan had started to wet the bed. So that was a big flash for me, though. Well, he's wetting the bed. So I took him. They wanted to schedule surgery, and I said, Well, shouldn't we just find out there? He's not diabetic first, because he's wetting the bed. And he said, No, he's wetting the bed because of his adenoids. And I said, That's it. And I said, Give me his medical records. So I took him over to my doctor, who on December 20 2000 tour said, Sure, we can do a blood sugar check. And we did a blood sugar check. And he was up in the seven hundreds hadn't eaten, because he had been vomiting that day. I mean, he was diabetic. And so he referred us

Scott Benner 9:45
to imagine right? He was he was in decay as well.

Jen 9:49
You Oh, yeah. Oh, yeah. He had fruity breath, all the things that you look for. And they actually he referred us to a pediatrician who was an internist. Just at their office. So he came in and scroll down. One U, H for our Q 15. One for you l QD, meaning one unit for every 15 carbs of human login meal time, and then four units of Lantis daily and send us home. You didn't go to the hospital? Yeah, my dad came in and said, you know, arguably a lot of people would say you should go to the hospital. Do you want to do that? And at the time, I was an idiot. And I was like, Well, no, the hospital means he's sicker. Okay, so we went home with no blood sugar meter with a script for insulin, and a kid that we could very easily kill that day. Yeah. So yeah, that's what it was. That's how that happened.

Scott Benner 10:49
What was at that time, if I'm, if I'm doing the math right here, Patrick's around four years old. Maybe you have two small kids. Yeah, yeah. And are you a nurse now? Did you finish nursing school?

Jen 11:02
I did finish nursing school. Yes. And yes, I'm an RN, now, okay.

Scott Benner 11:06
Yeah. What was life, like, growing up with a kid who had type one, you know, what was? What was the pathway for you and for him,

Jen 11:18
you know, I, I submerged myself into the diabetes world, spent every moment on on websites and research and looking for why this happened. I was still in school. And in school, it was funny, because I was learning the opposite of what I was learning in real life about diabetes. So I had to really kind of temper myself for school and make sure I passed the tests by giving the wrong answers. Just because nursing care for diabetes is not very succinct. It's not very, it's not what people with diabetes do. I started to volunteer at diabetes camp, we started sending Nolan to camp and I just really immersed myself in the world of diabetes to the point that, you know, I think my family missed me. I think I missed him a little bit, I think that I, I put so much into this tragedy that happened to my son and trying to make it better and trying to find the best care for him and do the best that I could for him that I think in some ways, I kind of lost him. I forgot that he was a whole person.

Scott Benner 12:31
You just, you just saw the diabetes.

Jen 12:35
I saw him too, but I felt so I've just really wanted to make it as good as possible. You know, and just really make sure that he was getting the best care possible. And that and that, you know, we we fought it.

Scott Benner 12:50
Was it were things not good? Or was that just your perception that they you're trying to get them back to perfect?

Jen 12:59
I think it's my perception. I think he was doing well. I mean, his his a onesies were all great. He was doing well. He he took it in stride. like you wouldn't believe there were some battles when he got older, but he just really took it well. I think that just the regular things about a child kind of fell by the wayside. And I don't think anyone minded or thought any different of it, but in retrospect, I see that now that you know, he was a musician. We did We did music stuff with him. We took him to the conservatory and he did his drumming there and stuff and, and you know, but I feel like it was always me falling behind going, Oh, your sugar, sugar, you know, and you do you have to you have to make sure they're okay and not landing in the hospital. So really, it's a fine line, taking care of a kid with diabetes.

Scott Benner 13:58
So, okay, I guess knowing the rest of the story is tainting how I'm asking my questions, but Sure, but I guess there's no way around that honestly. Sure. Is there any chance that Hindsight is making you think this like when did you start coming to this conclusion I guess

Jen 14:19
I think I started coming to the conclusion I think I came to it right away. I think I came to it right away realizing this is this is I'm making a choice and this is the most important thing making sure that he stays alive and and that he is in good control and that he doesn't have complications later. So I think hindsight does taint it. I don't regret anything I did and I wouldn't do it differently because you can't you do what you do when when it's going on and and I would do so much of it just like I did. Because you do have to you have to advocate for your child. And I did A lot of that. You know, you have to go to bat for them, you have to argue with the school you have to you have to the school nurse is either your ally or your enemy. And that can get that can get really touchy, too. I don't think I would do a whole lot different though. I think there's days when I think that I would. But what I would have done differently would have led to him leaving us sooner. So like if I just allowed him to do everything the way he wanted to do it, he would have been gone sooner.

Scott Benner 15:35
Okay. The technology back then. So Nolan's diagnosed in 2004. Is that right? Yes, that's two years before Arden was diagnosed. So our technology path is going to be very similar because there was no, there was no great leap from 2004 to 2000. No, it wasn't so you were get you probably had. I mean, maybe a pen if you were lucky. But needles and a small meter. That was all you're here.

Jen 15:59
Yeah. Right. Yeah. And started pumping though. Yeah, pretty soon.

Scott Benner 16:04
Okay. So your your, your focus is on trying to keep his blood sugar's stable, trying for him not to be too high or too low. Aiming for that a once every three months, it's pretty much feels like your only ability to understand how well you're doing. And that was right. The extent of it. Is that right?

Jen 16:24
Yeah, yeah, pretty much. Yeah.

Scott Benner 16:28
Was he having a lot of lows or highs? Do you recall?

Jen 16:32
He had a few lows. He didn't have a whole heck of a lot of lows. And his highs were like under 200. So he wasn't really he was really in good control. I think his first A once he was five something. And then he just slowly made a climb. Like I think the highest he had before he was 18 was in the sevens. Yeah. Okay. Um, you know, he was usually around six, okay, you know, six and a half, seven. And so he did really well, until he got older.

Scott Benner 17:04
And so through regular elementary school, middle school, he was doing fine. Did he start to ignore his diabetes at any point, as he got older,

Jen 17:17
middle school, he started he wanted to take it, take it into his own hands more. And I was told at the very beginning. As soon as he was diagnosed as you need to let him as his diabetes, you need to let him do his stuff. Okay, so I tried my hardest and that was excruciating. Because he would, you know, middle school, he, he just kind of got tired of it. I would say, Do you have your kit? Yes, I have my kit. Can I see it? No, I have my kids in my bag, or you put my bag mom. Okay, so I take him to school. And I get to work on the other side of town. And I get a phone call from the nurse that said no one forgot his kit. And there wasn't my card had fallen out of the bag. But this happens so often, like almost daily. And he would start to lie about his blood sugar's and, you know, 107 it's 109, you know, and finally realized that if he was gonna lie, he should give me a believable number. It's 210. You know, I mean, he, he just became really resistant to having diabetes. And he was tired of it. He didn't like it. But he also that's when mental illness starts showing up as well. And that's when he started showing a lot more signs of mental illness as well as middle school. And so he had we just behaviors and stuff like that, and he would get in trouble at school. And I mean, it just became a whole lot to deal with.

Scott Benner 18:46
Right? Were those mental illnesses ever diagnosed?

Jen 18:49
Yes, he was diagnosed with bipolar disorder when he was oh, I want to say 18 He was diagnosed with ADHD at a young age, which we know now that a lot of ADHD in children shows up later as bipolar disorder. They're on the same spectrum. I didn't know that until recently, but so a lot of kids are misdiagnosed and medicated. And that's what happened to Nolan. I don't want to say he was misdiagnosed you can have a DD and bipolar disorder.

Scott Benner 19:21
Right. So he was being medicated for ADHD when he was younger. Yes. Yes. How does what can you remember the first time you thought something's really wrong? Like how does bipolar show itself the first time in your situation?

Jen 19:37
I think the first time I realized something was really wrong

Scott Benner 19:50
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Jen 23:05
you know, I guess when he got kicked out of middle school, he got kicked out of middle school because he bought a marijuana joint from a kid in the bathroom. Now the kid has sold it to him get to stay in school. I'm not sure how that worked out. But being diabetic and being one of the only diabetic kids that is Middle School. And on top of that the only diabetic kid with with a 504. Is it a 504? I can't even remember now with a care plan. Yeah. And a mom that was involved. They were really happy to get rid of them. And I thought that but I thought no, Jen, you're just being paranoid. That's not why. But yeah, they're happy to get rid of the diabetic kid who they have to answer to the parents of. And that was a theme that kind of went went around like him and another kid would get in trouble and he was always the one that got in more trouble. What so he bought what he bought was a fake marijuana joint in the bathroom, oh, and middle school, but that's what happened and he got kicked out. So he went to alternative school and now alternative school they had, you know, trouble getting him to listen and the teachers really sat and talked to me and said, Look, you know, I'll ask him to do this sweep the floor. And I come back in an hour and he still hasn't done it like he's this is a problem. And that's when I really started realizing that there was some some issues with him. He seemed absolutely normal. But his functioning level was not he just compensated so well.

Scott Benner 24:36
So there was you didn't see the big swings it wasn't manic and then depressed. It didn't go back and forth like that.

Jen 24:43
Unfortunately you know, with high blood sugars, we get moody. And so I did see mood swings, but we didn't know Is it is it at first we thought it's diabetes stuff. It's diabetes stuff. and it is. And then we thought, well, it's bipolar stuff. And it also is. And there's just no way of knowing which one it's related to. Keeping him on the bipolar medications was, was hell, he didn't want to take them, they make you feel crappy. I would find them hidden. You know, they, they'd been in his mouth, they were hidden. I check his mouth, say, show me that you swallow. Like it was like jail. Right? And he just didn't like them and wasn't going to take then most people with bipolar disorder don't like the medications, because there aren't really very good medications for

Scott Benner 25:35
Yeah. And so this just persists on I mean, he wasn't really going to middle school anymore. Like alternative school doesn't sound like it's not it's not a public situation, right?

Jen 25:45
No, it's for kids that are kicked out of middle school for behavior stuff. So, you know, he got put in behavior classes when he was in high school, he went to regular high school. And the behavior classes were such that they were in the basement. When the regular kids walked by for lunch, the behavior kids were made to turn around and face the wall. It was it was not good. I'm not sure. He really didn't, he never thought he never had sold drugs in school. He, he just was a he was kind of a jerk. You know, he would giggle and not do what he was supposed to do. And he had fun when he was in school with other kids. So I think that he is, I always said he glowed in the dark, because of the diabetes, because of the involved parent. I remember going into the school and it was the first day of school, I had to go have my meeting with the nurse. And three or four different types of kids type one kids at the high school walked in and the nurse said, Okay, what is this your insulin? What do you How much do you take? And they're like, I don't know, how often do you check your blood sugar, like in the morning and at lunch? And she's like, okay, and you take how much she's like, they're like five units. And she's like, okay, and that was their plan. And I thought, that's crazy. You know, these parents aren't involved at all.

Scott Benner 27:14
Well, you have, obviously, intersecting issues that we're all coming together to share, I give you up. And then the bipolar comes, and even was ADHD early on. And then I imagine at some point, drug use ramps up.

Jen 27:29
Yeah. Then he started with drug use. And he started smoking marijuana, and taking pills from kids. And he did that for a few months and was just ridiculously tired of it. And I remember getting a text message him from him at my job. And it said, Mom, we need to get me help. real help. I can't keep doing this. I don't want to keep doing this. And I just cried. So I started trying to find him help. How old was he would have been about 16. I want to say 15. I'm sorry, he was about 15. And I was working at the hospital in a clinic. And I would spend every break time calling and calling P MCs which they're called P MCs. They're for kids with medical and substance abuse issues or behavior issues. And they they're all medical, the m&p MC is for MediCal. None of them would take him he had Iowa Medicaid. And I could not find a single place in Iowa to take him because of the diabetes. They said they were not equipped to deal with somebody with type. They weren't comfortable. They weren't equipped. They didn't have a nurse. Yeah,

Scott Benner 28:50
I've heard this a lot on the podcast when people are trying to get extra help for their kids that have you know, extenuating issues. And yeah, and then places are always like, well, we don't take kids with type one happens a lot.

Jen 29:03
And it's ridiculous. So I called the American diabetes Association. And I got an advocate who sent a letter and they got in touch with a social worker who was wanted to advocate for him. And we forced a couple of places to take him. And they would kick them out. They would find a reason to kick them out. One of them said, there was a bunch of kids that ran away. And no one opened the door to let them back in when they came back. And he mumbled something about why I want to run away or something and they sit up that's it. You're done. You're type one, if you run away, you'll die. It's a liability. And that's and they kicked him out. They made me come pick him up on Easter. And it was over in Fort Dodge. They I asked for his medical records because I was going to deal with the advocate on it. And they you know, told me my kid was not an angel and I said well, I didn't think you're safe. But thank you But I do think you should keep them in treatment facilities. You know, just it seems wrong and people have really a lot of trouble believing Oh, they won't say no. Because the diabetes? Yes, they absolutely 100%. Well, and that is a tragedy.

Scott Benner 30:19
Yeah. Well, where does that where does this all lead to? I mean, that that's a rehab. It's not. I mean, he's not getting you know what he needs from there. Obviously, they're, they're kicking him out of there. And now he's back on you. Are you married during this?

Jen 30:33
I, he's his dad and I divorced in 2009. So his dad is an alcoholic. And as that plays into a lot of his problems, his dad's an alcoholic with major mental illness. In fact, his father right now is missing. We don't know where he is. He was eluding the police about three days before Nolan passed away, and is jumped in and faked his own death. figures on suicide and now is hiding from the police. Wow, that's so that's that's it? Yeah. It's really an interesting twist. Drama,

Scott Benner 31:07
I'm not looking to go down his path. What kind of what kind of mental illness for him?

Jen 31:12
Well, I would say schizophrenia, but he's not diagnosed, but definitely bipolar. But he has a lot of paranoia. You know, he's just a really smart guy, very talented musician. Just really clocked out of his kids lives and was an abusive person. So Gotcha. Yeah. mentally abusive,

Scott Benner 31:35
right? Like that. So does Nolan's drug use like it? Because I'm thinking back to when he says to you, I can't do this. I don't want to do this. But but he was, I'm assuming self medicating, at that point. Trying to get around, eventually go back to it.

Jen 31:52
Yeah. Oh, yeah. He didn't ever stay sober for too long. You know, self esteem and all that kind of plays into into your choices. He really had trouble staying sober. And he got into, you know, he drinks sometimes it was never his drug of choice. But he did start using methamphetamines. Probably when he was about 17. We would take him to the hospital, I would find him. You know, I find him downstairs in DKA. We take him to the hospital. And after we'd have him in the hospital, in the ER, ICU, then we'd go to psych. And psych would be able to send him somewhere. Because what we wanted to do was find a place that would get long term treatment and maybe get him out of Sioux City. halfway house, that kind of stuff. But did so he would go to Cherokee, which was the mental institution and that's the one place that would always accept him. But it would happen the same way every time er, we'd start making the calls. We'd go to the ICU, we'd spend another couple of days making the calls. And eventually, Cherokee would always be the place that would take him. And so they take him up in the ambulance up there. Sometimes he would pull out his own IVs and try to walk out of the hospital and have to be stopped by the by the security there. But they always would take him and he turned 18 up there and Cherokee. We went all the family went up for his birthday party. We always kept in really good contact with him. His grandparents on both sides were very supportive. His brother and sister and I would always go up and visit and his dad tried to visit a few times. It's sometimes he wouldn't see his dad. So it just back and forth with Cherokee and finding different placements and and just in and out of treatments for the last seven years.

Scott Benner 34:04
Yeah, Jim, I try my hardest to just sort of stay dispassionate while I'm having these conversations. But Nolan had his 18th birthday party in a facility that almost made me cry for some reason. I mean, we've been talking for half an hour, nothing you've said has been like, you know, right. Not happy. Yeah. Yeah. And yet that got me. Yeah, really. He

Jen 34:27
went, he went from the pediatric unit to the adult unit on his 18th birthday. And we took pictures we they let us use a party room there. So we all drove up to Cherokee me grandma, grandpa, Indian grandma, grandpa for cello and and just all the family went up and his brother and sister and we were able to have this birthday party and it was just very bittersweet.

Scott Benner 34:54
Let me ask you a few questions about this from your perspective. So now, at this time, it's been a few years When he's 18, are you hopeful that this is going to get turned around? Or is this the thing you live in every day? That you're just like waiting for the other shoe to drop? Like, what's the what's the feeling in the back of your head? Oh, okay.

Jen 35:15
Yeah. Oh, like I think at that point, I had hope. But every time something else would happen, it was a shoe dropping, and there was always a shoe dropping so many shoes. And I think we, I always held out hope. But I always knew in my heart somehow, that no one was like, a gift that was on loan, if that makes sense. Ever since he was a little baby, I kind of knew that. And, you know, he started overdosing, he would be fine for a little while, and then there'd be an overdose. Or there'd be, you know, finding him comatose, calling the paramedics to come get him, he's having behaviors, big time, just breaking everything in the house. He just, and I had hope. But I saw him suffering so much. And that was the hardest part. It was to see somebody you love so much that you brought here, you know, that didn't ask for an invitation. And to see them suffer like that, to see him suffer with the diabetes ruined me. When he was diagnosed, I just, it was the worst thing that could have happened. And and I don't know why. Because it is not the worst thing that can happen. But it's pretty bad news. It's really hard for parents to go through that. Yeah, I took it really hard.

Scott Benner 36:45
Yeah. I can tell you that. I can tell no. Yeah. Talking about throwing yourself into it. How Oh, anything? It was.

Jen 36:54
It was it was everything. I just wanted it to go away. Because I think I think because, you know, we saw a little problems with him before when he was a kid. I think I thought just why him? Why not someone who can handle it better? Why not me? And I said, God, give it to me instead. And then God misheard me, he's had I said, as well. Why any hearing aid? I know. Anybody know,

Scott Benner 37:21
I just need to ask you just for context here. Do you have any mental health issues?

Jen 37:25
Um, I have ADD, and I have some depression. Um, so yeah, I those are mental health issues. Yeah. I think my doctor asked me if I was bipolar. A problem, I guess, mildly. I've always been really functional. But when I was a little kid in school that add was that wasn't a thing then. I mean, I'm 48 years old. We didn't have medicine for that. Really?

Scott Benner 37:52
There were just kids that didn't listen. Yeah,

Jen 37:55
there are lazy they like calling me lazy. I hate that word. Hate it.

Scott Benner 37:59
How about your other, you know, your other two kids? How are they?

Jen 38:03
So Patrick is I would say the perfect child or what they call the family hero. He has very few problems. He does struggle with depression. But he does seek help for it when he needs to. He's really ideal in the sense that he's been very self sufficient. He's very caring and kind, very funny. Just very healthy and forward moving now. He no one was his best friend. He lost his best friend. But he's really pushing to do some things now in life that he might have had on hold. So he's I you know, I don't think anyone in my family is 100% healthy, but Patrick's pretty good. Lemon. My 13 year old. She's wonderful. I think she's just an amazing kid. Two, she's learning to play guitar. She working on a feminist fanzine that she's doing. She's just really a cool kid. She does struggle with all the trauma that she's seen in her life with her brother. And the dynamic between her brother and I, I think it's got to be so hard for both of them to go through because with the drug addiction, there was just a lot of anger and and unhappiness and so many tears and so much trauma. And with the diabetes, and both of us being diabetic and moody, just you know, Nolan and I were a lot of like, in some ways. I always say he got the worst of me and his dad and then it was amplified. But he's really, you know, I think they I think both of my other kids are are very fortunate to be very bright and very aware of their own situations

Scott Benner 39:57
or their other autoimmune 's with any buddies, celiac thyroid anything.

Jen 40:03
So I would say that Patrick, who will not go to a doctor about it has possibly got like, IBS, celiac or something. He does have some stomach problems. But no, nobody's been diagnosed yet.

Scott Benner 40:17
Okay. How about your exes side of the family? Do you have any knowledge of them?

Jen 40:22
They don't have any and I'm close with the family. They don't really have any autoimmune. You know, they've got cancer in their family, but no and heart problems, but no autoimmune.

Scott Benner 40:31
Okay. So I'm gonna kind of fast forward a little bit now, because I'm assuming that from 1819 2021, it's just probably story after story of hard times, and craziness and stuff like that. Yeah. Are you? Absolutely. How did you take care of yourself during that time?

Jen 40:51
Well, that's a really good question. In all honesty, I don't think I did. I stressed a lot, I worried constantly, I wasn't sleeping. One night, I had thought, well, I can't sleep. This is so stressful when we have a glass of wine. And so I started drinking wine to go to sleep. And it didn't take very long until I was a full blown alcoholic, I could not stop. I checked myself into the hospital, in a what I like to call a bold career move, because I live in a very small town. And I went to treatment, so that I could stop drinking, and I haven't drank since that was three, almost three years. Good for you that I'll go. Yeah. But I if I didn't believe that addiction is an illness, I would be ashamed. But I wish I hadn't taken that first drink. You know, I didn't drink at all before that for many years. But it just it got me. Yeah.

Scott Benner 41:58
You were. I mean, was there a moment when you like, Did you see the juxtaposition? Did you say, Well, I'm medicating myself, the way that no one is?

Jen 42:08
Yeah, yeah. I said, I saw it right away. I saw it right away. But I couldn't stop. I went to meetings, AAA meetings and got my 24 hour chip, probably 24 times. You know, I wasn't able to physically stop I was having withdrawals and all of that and it was, life had become so stressful. that I had, just I guess I kind of threw myself into drinking. And I kind of had given up.

Scott Benner 42:45
Okay, yeah, I was gonna say at what point during all this to just go Alright, Everybody get in the garage. Let's start the car and go to sleep. Like gig. Yeah, seriously? Yeah.

Jen 42:55
Yeah, I felt like it not with the other two kids. But honestly, I had ideas of, you know, I felt so no one. He doesn't fit anywhere in this world. There's no help for him. I can't help him. Nobody seems to care. He doesn't, you know, he just can't get the help that he needs. He doesn't belong on this planet. And I'm just gonna take him with me. I had thoughts like that. And that's terrible. It's terrible. But I didn't want him to go alone.

Scott Benner 43:21
I can understand. I mean, what your Yeah, it's not what Listen, my kids got type one diabetes, and you know, thyroid. And you know, last night, for example, her toes got numb, which seems to be happening out of nowhere. And you know, like, there are things like that, that you think, well, these things suck. But we're gonna get through life, like, reasonably well, pretty great. But at what point what point does someone just pile one too many pebbles on the pile? It's on your head. And you just think I can't I just can't like it. Yeah. Not only that, you can't shoulder it. But that, that none of the things about life that make life pleasurable, exist anymore, because you have diabetes, you're depressed, you're drinking, he's doing drugs. He's got diabetes, he's bipolar. There's no second in the day that I can imagine for you where you were just like, you know, Leave It to Beaver. Like none of that existed. Oh, no. Yeah. Right.

Jen 44:15
I mean, I still make dinners for him. I still did like a lot of mom's stuff. But I clocked out, and for about about 18 months, I clocked out and then, you know, a clock back in and I knew that things wouldn't be perfect when I clock back in. You know, there were times when, when I would be so drunk that Nolan would pick me up and carry me to bed up the stairs. And I just thought that was so funny at the time. All isn't it funny? And it wasn't funny. I mean, it's really sad. But we also had that mutual love for each other that we cared for each other so much that, you know, he wanted to take care of me too. And when I wasn't drinking, he couldn't take care of me. And that caused some sadness for him. But it got to a point. I said spent so much of no one's life, so afraid of him dying, just petrified that he's dying. And then one day, I realized that now more than being afraid of him dying, I was afraid of doing this when I'm 80

Scott Benner 45:18
I see this, and that was a big deal. It's never gonna stop.

Jen 45:22
And I became more afraid of of that than him dying. Because I knew he was unhappy. I knew that I was unhappy, I knew that my other two kids were suffering. And it was becoming a burden on everybody around us. Because with drug addiction comes so much manipulation, and so much pain for the people. Like my mother could never say no to him for anything. You know, and, and because she loved him. And he would manipulate and cause harm. You know, he would take things from people sell them for drug money. What drug addicts do?

Scott Benner 46:02
Yeah. Are you saying I'm gonna, this might be ham fisted for a second, I gotta get through this thought. But are you saying that at some point? It it mimics I don't know, like someone being born with so many birth defects or so many medical issues that you think to yourself like, this is not this person's not equipped to live life even. And if you start thinking about that idea of like, maybe this is just a failed experiment, and it's not fair to them to be in this situation.

Jen 46:35
I think after I picked him up out of comas, so many times and Ted go to the hospital and psych Yeah, absolutely. And he had said to me himself, you know, I, I had complained a lot about it, like no one, this is hurting me so much to see you in the state that I see you in almost dead, like the time before he died that he went to the hospital, his body temperature was 87. That's dead, but he lived through it. And the doctor told me he's gonna have really bad brain damage and damage if it wasn't fine. Like he was fine, except for. He wasn't fine. But he probably lost some impulse control. But he didn't, you know, they said he was going to be a vegetable. And I'd said, Well, we're not going to keep him around as a vegetable. That's not what he wants or what anyone wants. But yeah, you're you're right. It was like it felt like that. Yeah. You know, now that you say that it felt it felt a lot like that. This is that I was doing more harm by keeping him around. And he even told me, Mom, stop saving me. Maybe it's my time to be an angel. And I thought

Scott Benner 47:41
he could that he could think that is one thing, but for you to hear it and to think, well, he might be right. That's another that's another thing like, like his, his existence felt cruel to him.

Jen 47:54
It did. Yeah, it did. Okay. I mean, the the existence with diabetes is cruel. The existence with diabetes and bipolar disorder with schizoid, fast, effective traits. That's mean. No, that's not. That's terrible.

Scott Benner 48:11
And then in that situation, the drugs are inevitable, actually, I mean, I've spoken Absolutely. I've spoken to enough people have have Bipolar to know that the drugs are are inevitable after that. So yeah. And you describe something that I don't want to skip over. And I also don't want to make you dig through it too deeply. Because it sounds painful. But the one thing I think maybe we're not talking about is that being lost on drugs doesn't exactly set you up for taking care of your blood sugar as well. So no, right. So not only is he kind of obliterated on what was the drug of choice by the end, methamphetamines. Okay. Not only is that happening, but on top of that wildly out of control blood sugars.

Jen 48:53
Oh, yeah. He became septic, probably five times and had to go to the hospital in the last year of his life. He tested positive, you know, he tested his blood sugar was in the 1500s. When they had him in the ICU, one of the times it took him three days to get it down. Below 700 I feel like it was ridiculous. He had sepsis, which is deadly. He had tested positive for tuberculosis. Like the kid made it through so much. It was done his body just the havoc that that wreaked on his body. You know, it was poor body and he I just looked at him and I think what a beautiful kid he was, and all the things that were going on inside of it the brain and and his body.

Scott Benner 49:50
If I give you a magic wand, you can lift away one of his troubles. I'm guessing it's the mental illness stuff, right?

Jen 49:58
And it's funny you say that because when he was cared, it was always the diabetes I'd take care of, it's always the diabetes, that I would take away. But once the drug addiction started, it was definitely the mental illness I would take away because that would help that would have that would have made it easy to recover from drugs easier to recover from drug addiction.

Scott Benner 50:18
This is uh, maybe, uh, maybe this questions, not clear, but or maybe it is, but if you take the bipolar away, do you think he was still an addict? Or do you think the drugs were a function of the bipolar?

Jen 50:31
I think the drugs were a function of the bipolar, okay, for sure. I don't think you would have tried the drugs at all, he was so impulsive as a kid. You know, if someone said This feels good, he would have tried it. And he was always that way. very impulsive.

Scott Benner 50:47
Gotcha. Okay, so anyway, geez, Jeff, give me a second. I don't know how you're living through it. Because it's, it's on top of me now. Oh, no, no, I'm okay. I don't want you to worry about me. It's just, I'm just listening very intently to what you're saying. And I'm thinking ahead and trying to imagine things. And it's a lot all at once. Yeah. So when do I know? When do I see you? Like, pop up in the Facebook page? Like, what? What got you there? Like, what made you find? Did you find the podcast first or the Facebook page? First,

Jen 51:26
I saw on the Facebook page first. And I think out of all the Facebook pages that I belong to for the for diabetes, this was the one that was that was good that had that was more real to me. And I posted something about Has anyone else ever struggled with Max meth addiction? I was reaching out this was the last time that he was in the hospital, Biddle. Um, was it maybe it was when he was in treatment, and he went to the hospital in Champaign, when he lived in Champaign, Illinois, and he was in treatment there. I had just said, you know, my son's in the hospital, he's has anybody else ever struggled with the meth addiction? What do you do? You know, what is this, you know, just reaching out. And the response that I got from people was one, so supportive, and to so much response, and I was just, I was shocked. Because most people kind of ignore that kind of thing. Most, especially parents with diabetes, they don't want to, they don't want to hear it. And they don't want to see that that could happen. They just, it's, it's too much to think about for sure. And that's something I thought about, I don't want to worry, parents of new diabetics by any means.

Scott Benner 52:40
That's my for you, I listen, I often have this thought, while I'm making the podcast and seeing all these people's lives virtually, that, you know, people, you know, babies are born every second, there's just countless numbers of them. And they're all going to go in slightly similar in slightly different directions. And some kids are gonna end up being alcoholics, and some kids are going to end up not and some kids are going to end up on drugs. And some kids aren't some kids are going to be incredibly kind. And some people are going to be mean and like blah, blah, blah, blah, right? And right. And we knew you have this idea when you're when your kids are younger, and they get diabetes, like oh, this is the thing they're going to be except those people still end up being alcoholics, drug addicts, nice people, etc. You don't you don't think of that when they're eight. And I'm, you know, I can hear when you're talking about Nolan even. I feel like you picture him sometimes. Like he's six, seven years old, when he's just nothing but possibilities.

Jen 53:38
Yeah, yeah. And I saw that throughout his life, I still till the till the day he died. Well, maybe a couple of weeks before I stopped, kind of, but he was doing so poorly. But I still had fleeting moments till the day he died of feeling. Hope for him. Yeah. And you know what a smart guy he is and what he could do, you know, he, he was very smart. And he was such a talented drummer and an artist, and just all of these things. And I thought, you know, he had just gotten a tattoo gun for his birthday. His grandma said, that's what he wants. Should I get it for him? And I said, Who cares? At this point in his life, getting whatever makes him happy.

Scott Benner 54:24
All right, in this rocket right into the ground. Great. Yeah, let's go for it. Right.

Jen 54:27
Yeah, basically, yeah. And he wanted to tattoo me and I was actually going to let him after he, you know, showed that he could do a tattoo on himself. And so he did a tattoo on himself, which he had done when he was younger anyway, with the kid made a tattoo gun out of a remote control car motor, like he was 10 or 11. When he did that he just was smart, but the deviant and because who wants to kid detect?

Scott Benner 54:54
What a weird, weird parenting moment my child has fashioned another device out of a device except pig likes to draw a picture of Scooby Doo on himself. So now I'm not sure, exactly.

Jen 55:04
Well, you know, he tried to he tried to tattoo the word love on his arm. But I confiscated his gun. So he only had the first two letters. So it said l o. So I called it his British tattoo, I'd say hello. He got so mad.

Scott Benner 55:20
So, so back to where you're at in that Facebook group, like you come in, you asked that question, what I saw, and I can't see the whole group, like, it's too big for me to, like, stay on top of but what I saw was a lot of just support for you. I don't think people had a lot of practical advice, but they were there was a ton of kindness

Jen 55:41
to absolute so much kindness. Yeah. Was how much time was

Scott Benner 55:45
that actually helpful for you are?

Jen 55:47
Absolutely, absolutely. And a lot of people saying yes, my sister's a drug addict, or this and that and just talking about people who had addiction in their family, it just opens up the conversation for people. And it's so liberating. Because you don't go around, you know, everyone's got that bumper sticker that says, you know, my son's an honor roll student, you don't say, hey, my son got into a really good treatment facility. I would, I would, but but they don't make that bumper sticker. But shouldn't they? Yeah,

Scott Benner 56:18
my son handles math fine. Just yeah, no way to do that. So so he gets put into treatment around the time you're on the Facebook group, and then gets out. And then it happens again, am I remembering that right?

Jen 56:32
Yeah, he came back to Sioux City. And he relapsed pretty quickly. And then he had, I want to say two or three more stents in the hospital.

Scott Benner 56:44
And he made these related stuff.

Jen 56:46
It was always for diabetes. But it was always because so what would happen when he would do the math and he would be up on meth for several days, and then he would go to sleep and people on meth sleep for several days at a time? Well, unfortunately, Nolan doesn't have several days to sleep because he needs to take insulin. So many times, I would kind of try to follow his pattern, I would go to where he was, I would give him insulin, I would find his insulin and give it to him. And, and that was another thing is insulin was never kept in a good way. You never knew if it was expired or what you know what you were, you'd give him whatever, right. And sometimes he would fight you and if he was going to punch me, I wouldn't do it. You know, I would say okay, we're gonna go I, I love you goodbye. But I would try pretty hard to get his insulin. And it's a miracle that he lived through that as many times as he did. So he would wake up and take insulin and you know, his sugar would come down and he'd be fine for a week or two. And then you'd start up again. So this pattern is hard to follow the pattern because it changed.

Scott Benner 57:57
Testing. Give me a testing.

Jen 57:59
Yep. Testing.

Scott Benner 58:00
Okay, sorry. So you were trying to chart you were trying to find a pattern you and you couldn't. So when you went and visited? Yeah. You were visiting him like in like, where he was held up using it, wasn't it? Was he even living on his own? Or was he bouncing around or

Jen 58:14
he was homeless for a while. And then he on his birthday? September 16, my mom let him move back in. He was already kind of staying. He would go there to shower during the day and stay for a really long time. And she would make him leave at night. There was our you know, we were trying to do the tough love, like you can't do drugs and stay here. But she just couldn't. And I'm glad because he died at home and not on a street corner at my mom's house. And yeah, so and I had been I was in Des Moines, so I was two and a half hours away. And then on the way home. I got a call from Patrick. And Patrick said, Nolan is cold. And he's not I don't think he's breathing. And I said, Okay, call 911. And I had just left the morning and had two and a half hours to travel. And I called Dennis who was driving in front of me my fiancee and told him what happened. I said, I think no one's gone. And this is something we just were, it was a matter of time, because he had just been in the hospital weeks before that we just knew. And you know, I hung up the phone and then I panicked and lost it and started crying. My youngest was with me and she started crying. And we were just kind of panicking all the way home. And then we got home and he was gone. The paramedics come and pronounced him dead. My mom lost her mind and you know, it just it was it was a big family and then we just kind of sat around and told stories about him and It felt peaceful.

Scott Benner 1:00:02
Can I? You You said you knew this was gonna happen. I remember you being on line once and saying that he was in a rehab, but they kicked him out or something and you were like he's going to die like you were you were positive like a week before this happened that it was going to

Jen 1:00:18
yes, this was this. This was not in rehab this that was in the coffee psych facility in the hospital, and he was supposed to go to inpatient treatment. And they had had him signed up to go to inpatient treatment, all the doctors, and I'm looking through the doctor's notes and everything, everything says inpatient treatment. Well, the very last day, the nurse practitioner who has done this before, several times, let him go. And I called, I heard that they were gonna let him go. Because he called and said, Can you pick me up? And I'm like, hang on, let me make some calls. So I called and I talked to Sarah, the social worker, and I say, Tara, she can't let him go. He's gonna die. He almost died. The last time he did she know, he almost died. And she said, Yeah. And I said, Does she know that he's going to die if she lets him go? And she was quiet for a second? And then she said, Yes. And I just lost it. I couldn't, you know, and then we picked him up. And I picked him up and took him to my mom's we talked to her, they decided he couldn't stay there if he was going to use and he said, he's, you know, he wouldn't stay there. And he was homeless for a couple of weeks. And that's, and then he came back to my mom's he was at my mom's for another. He was I suppose he was homeless for a week. And he came back to my mom for two weeks, and then that's when he died.

Scott Benner 1:01:49
Well, I'm very sorry that any of this happened.

Jen 1:01:52
Thank you. Me too. Of course.

Scott Benner 1:01:54
Can I ask you? Was there any sense of like, relief? That's might be the wrong piece?

Jen 1:02:01
Or no, yeah. It's not a wrong word. Yeah, there was lots of sense of relief with it. I mean, because he wasn't suffering anymore. You know, we had our first holidays. And not only, I mean, I missed him so much. And it was hard, and it was sad. But when you have a drug addict, the holidays are not good times. Because you're constantly worrying about what is what are they going to do? What are they going to show up and have a problem with? How are they going to, you know, he would become very, his sugar would get really high, and he would be extremely moody and mean, and yell and verbally abusive, and just these things that would just very upset me so much, even though I knew that it wasn't coming from his heart. It's just upsetting. And so there's been relief. But then there's been the extreme sadness, and then the the sadness for what his life should have been. Yeah. Came right. You know, I hate to say should because that's presumptuous. But I what, what it could have been or what, you know, why did he have such a hard time? Yeah. You know, and all these other kids get to have nothing physically wrong with them. You know, all kids with diabetes have such a hard time.

Scott Benner 1:03:19
Yeah. But then once it starts to, when all this other stuff on top of it, though. Oh, yeah,

Jen 1:03:25
absolutely. Absolutely. Is that fair? And I don't think life is supposed to be fair. I'm not. I'm not one of those people. But I mean, nice was a little more fair.

Scott Benner 1:03:38
A little more fair would be okay. Yeah. How long has he been gone now?

Jen 1:03:43
So he died on October 3 2021. So it'll be six months coming up soon here. It seems like longer. And so also, it seems like yesterday, too, sometimes.

Scott Benner 1:03:54
So has this. I've so I still barely don't want to ask you these questions. But you can. It's pretty open, has his passing made your other kids lives easier in some ways, and harder in some ways.

Jen 1:04:09
It's hard for them because they lost their brother and their friend. But it opened doors for sure. One, I've gotten to know them a little more now. So they kind of get their mom back, which is nice. We're learning to know each other a little bit now. Patrick is going to go to college now. He's never gone left town or anything like that, because he's wanted to stay home in case something happened with his brother. That was never asked of him. But it's just what you do for family. So yeah, some doors are opened and I think that Nolan would have been very, very happy to open those doors.

Scott Benner 1:04:52
Was he aware of the impediment that he was on other people's lives?

Jen 1:04:58
I think so. And he was definitely aware of how much he impacted my life. And he would say, don't do those things for me. He wanted independence, he wanted that. But we knew what would happen if he had it. And it did, you know, the more I pulled back, the more sick he got, and I but, but pushing more and taking more control would have made his quality of life so poor. Because what 24 year old wants to be taken care of by their mother,

Scott Benner 1:05:37
I think you're in a completely Listen, my understanding of all this is is, you know, obviously not yours. But I've now interviewed two people who have who are bipolar. And now have this conversation with you about your son. There's an after dark episode, I think it's back in the three hundreds, it's just called after dark bipolar. And it's okay. It's with a young man who has type one and bipolar. And I'm telling you that if his experience was even anything like your sons, I don't understand how you're supposed to. I don't understand how you're supposed to win. You know, so I couldn't see a path through it. When I spoke to him. I don't see a path to it. While I'm speaking to you. I think that you're either. I mean, I'm trying to figure out why you seem so okay. Right now. Or, I mean, how is

Jen 1:06:29
it? I think, I think that I'm okay. I guess, I guess it's who I am deep down. Like I said to the lady doing my eye exam, she had known me and known about my son and said she was sorry. And I said, you know, I got it late. Think of it this way, I have two amazing children living and I got 24 years was an amazing, brilliant human who taught me a lot. And I have to think of it that way. Because there's no any other way is very negative. And really, and don't get me wrong, there are times when all I am is a bundle of tears, and I just hate everybody around me. And I have to curl up in a ball and go cry by myself and write sad stories and just feel incredibly sorry for myself and miss my son. I have to do that sometimes. But then there's other days where I wake up, and I feel that way. And I I let myself do it for half an hour. And then I have to move on with the day. I do some yoga, I'll do some, you know, make some coffee and just read or meditate and then just go to work. Whatever. I I guess I speak about it, frankly, because it is Frank. It's It's It's facts. And missing tremendously most of the time, but I still feel him here. If that makes sense. It does.

Scott Benner 1:07:58
When you close your eyes and you think of him. Is he at a certain age?

Jen 1:08:03
Yeah, I think them at about 2021. Okay. Yeah, I think of him about 21. I mean, I miss him as a little boy, but I think of him is perpetually about 21 With just a little bit of scruffy facial hair, messy hair, making some dumb joke driving around with the dog in his car. You know, his best friend was that dog Tommy and he I'd be driving home from work and I'd see him pass me on the road, the dog sitting in the passenger seat like a girlfriend. It was just the cutest thing in the world. So

Scott Benner 1:08:40
was he able to have any personal relationships.

Jen 1:08:44
He had girlfriends. And he had a lot of long term friends a lot more friends than I knew about because his funeral is packed full of kids. He did have friendships and he had some girlfriends, but towards the end, I think the addiction and he even said Who wants to go out with a drug addict? You know? And I said, Well, yeah, I always hoped you'd find a girlfriend that would be like a nurse and want to take care of him. But I didn't I wouldn't want to do that to her either. Right? Because it's too hard.

Scott Benner 1:09:17
Do you think? How, how prevalent Do you think that the drug problem is in your area? In general? Oh, it's

Jen 1:09:26
huge. It's huge. There's a lot of it here. So cities, especially with methamphetamines, it's really big. And alcoholism is huge here too. It's kind of you know, it's a conservative conservative area of Iowa where there's a lot of very poor people. And then there's your middle class and then there's a lot of very wealthy people. The poor and the wealthy are make up a huge portion of the population. And it's anytime you have those economic issues you have people that are doing? I mean, some people use methamphetamine so they can work three jobs. And they do it for years.

Scott Benner 1:10:07
Wow. Yeah. And not to make a ton of money just to keep going.

Jen 1:10:11
Oh, yeah, just pay the bills. Right.

Scott Benner 1:10:12
It's sad. No kidding. It's sad. Jen, is there anything that I haven't asked you about that you wish we would have talked about?

Jen 1:10:21
I don't think so. I think you did a really good job asking good questions.

Scott Benner 1:10:25
Thank you. I've been looking forward in an odd way to talking to you for a while. Me too. Yeah, I just know that. As the as the day gets closer and closer, and I see your name coming closer to me on the on the calendar. I just I don't want to do a bad job is how I started thinking as it gets closer. Oh,

Jen 1:10:45
you do? Wonderful. You did great. I made me feel good. And no judgment. And I really liked that. And the stuff you said to me before, too, about this is real. This is real stuff. And you don't want to sugarcoat things like that. No pun intended.

Scott Benner 1:10:59
Yeah, I just think that, um, I mean, listen, I whoever would hear Nolan's story, and judge him. I mean, has no, no, no idea about health or, you know, like, it's just, there's only so many things that can get attached to you in the course of a lifetime, then they're gonna drag you down. Point. Like, I mean, yeah, they're not like, you know what I mean? Like, it's, yeah, mental illness is still completely misunderstood by some people. This this poor kid was, he was just taking the past that were available to him. And yeah, none of them are good. No, you know, it's not that there was a good path available, and he just decided not to take it. I just don't think his options were in any way going to lead them to where anybody would hope for him to go. Yeah,

Jen 1:11:47
I agree. Yeah.

Scott Benner 1:11:48
I'm glad you said that. No, it's sucks. But I mean, it does.

Jen 1:11:53
Get 24 good years,

Scott Benner 1:11:55
ya know, and I'm really impressed with your excuse me. I'm really impressed with your ability to, to focus on the good stuff. Thank you. Yeah, no, it's really wonderful. I want to wish you a ton of success. And are you taking care of yourself now? How's your time? I am. Yeah,

Jen 1:12:14
I am. Yes. I just passed my written out but the tests with no retinopathy so I'm, I'm happy with that. Because I'm old. And yeah, yeah, I'm doing I'm doing good. I finally got myself to You know, I'm on the league right now. And and I'm taking a lot better care of myself now, too. So, in honor Nolan, we always say that everything goofy that we do. We say it's an honor and all and and everything, you know, but there's a lot of things I do in honor of him too. So

Scott Benner 1:12:41
listen, I we didn't talk about him at all. But the bravest person that story is the guy that's dating you.

Jen 1:12:47
Yeah, I know. Tell me about it. He's He's a lucky guy. Dennis is a really good person. You know, he has a good you know, his dad was a type one. So he has a lot of understanding of that to

Scott Benner 1:12:59
really well, I'm glad you found. I'm really happy. Like it made me happy to think that you that you have somebody. Yeah,

Jen 1:13:05
you're the second person to say that today. So yeah, you're right. It makes me happy too.

Scott Benner 1:13:10
Yeah. I mean, you've been through a lot too. You deserve it. And sort of your children, I hope I hope Patrick goes off and, and builds a big life for himself. And I think lemon sounds like she has enough time to kind of process all this and, and find her own way. So

Jen 1:13:27
he's doing good.

Scott Benner 1:13:28
I'm glad for you.

Unknown Speaker 1:13:29
I thank you so much, of course.

Scott Benner 1:13:40
Once again, a big thanks to Jen for coming on the show and sharing Nolan's story. I also like to thank touched by type one.org. And remind you to head over there and check them out. And the Contour Next One blood glucose meter, which you can learn more about it contour next one.com forward slash juicebox. There's also links in the show notes of your podcast player, and links at juicebox podcast.com. To these and all the sponsors, head over to t one D exchange.org. Forward slash juice box and take that survey. And if you're interested in more after dark episodes, I can tell you about them. Let me wait The music's just wait one second.

There are so many more episodes in the afterdark series. Couple of ways. You can find them either at juicebox podcast.com, scroll down, you'll see them there. Or you can go to the private Facebook group Juicebox Podcast, type one diabetes, go to the top of the page, the page or the top of the page, click on the featured tab. There's some featured posts there. One of them says Juicebox Podcast series. And there's a whole bunch of lists a whole bunch of lists. There's lists of lists. No seriously, there's these really great little graphics that break down different series. For example, there's some special episodes. There's the Pro Tip series, the quickstart guide how we eat diabetes variables. Scott and Jenny episodes, how to Bolus for fat and protein. And right now, there's so many great lists here. Oh, there's a whole series about pregnancy, thyroid, and then after dark, this is a episode. What do we say at the beginning? 677? No 678 of the podcast, but it might be like, oh, gosh, let me I can read them to you. First afterdark was it episode 274 is about drinking to 83 was about weed 305 trauma and addiction. 319 was sex with type one from a female perspective. 336 was depression and self harm. 365 was sex with type one from a male's perspective 372 divorced and co parenting 380 For bipolar 393 bulimia and depression 399 heroin addiction for 22 is called afterdark Ami. 450 psychedelics for 62 Sexual Assault PTSD for 72 living with bipolar five await adult child of divorce 531 diabetes Complications 545 Eating Disorder 558 life struggles 577 50 years 585 ADHD cocaine and abandonment. These are the titles 606 childhood trauma 618 sex worker 627 Male disordered eating 651 recovery and today of course 678 Nolan story. Check them out. I think they're some of the more brave episodes of the podcast. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.