#760 After Dark: Jon
Jon has type 1 diabetes and an incredible life story.
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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, and welcome to another episode of The Juicebox Podcast. This is episode 760.
Today I'm going to be doing an after dark episode with Jonathan. And Jonathan reveals so much about his life and his life with type one diabetes that I don't rightly know how to title this episode. It's definitely an after dark though, you're gonna have to listen to find out more. 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. If you enjoy this after dark episode, there are almost 30 others ranging from drinking to weed smoking, eating disorders, drug use everything. You can find a complete list of them on the Juicebox Podcast Facebook page in the feature tab, or go into your podcast player and search juice box. One word podcast after dark after dark two words they should all pop right up in front of you. By the way, I'm looking for a serious weed smoker with a great a onesie to be on the show. Reach out if that's you if you enjoy the Juicebox Podcast and moreover enjoy that it's free and plentiful. You have a few people to thank for that those people are the advertisers Dexcom on the pod G vo Capo pen, the Contour Next One blood glucose meter us med touched by type one. And in pen from Medtronic diabetes. You can find a list of all the sponsors at juicebox podcast.com Or in the show notes of your podcast player. But today's episode of The Juicebox Podcast is sponsored by Omni pod five. Learn more about the Omni pod five at Omni pod.com forward slash Juicebox Podcast is also sponsored today. By the Contour Next One blood glucose meter get the blood glucose meter that my daughter carries. Yes. Tour next.com forward slash juice box.
Jon 2:28
Okay. My name is John. I'm a type one diabetics living on the East Coast for 43 years. And I'm a social scientists and musician dad recovered alcoholic and drug addict and currently am suffering through autonomic neuropathy and gastric release.
Scott Benner 2:54
Okay. Well, that just gives us plenty to talk about, John. Yeah, yeah, yeah. Yeah. How old were you when you're diagnosed?
Jon 3:02
Three years old.
Scott Benner 3:03
Wow. 14 years old. Is that? Is that 82?
Jon 3:07
Ah, 7979. Wow.
Scott Benner 3:12
Oh, I'm sorry. I did the wrong math. 79. Okay. Three years old. 1979. Diagnosed back then. I think we know the story, right? You were using? Probably, gosh, regular. Did your parents ever talk to you about this? You know what it was like? It was?
Jon 3:32
I really I have there's vignettes of it that I remember. There was there is a series of events. The first was that my father's mother had passed away. And it was when we were transitioning from moving in a transition. You're moving from Texas to Michigan. And on the way I got really sick. So we had a family member just die. And you know, I got really really sick. And shortly after recovering from that virus I was peeing all the time, just constantly urination Bedwetting, and these kinds of things, right. So my parents didn't really know what was happening from and they did not talk about it. They actually use like corporal punishment to try to get me to stop urinating know that kind of thing. They were kind of fundamentally like you're not adjusting to the stressful time like you should you need to keep up mentality. They were they were under a lot of pressure to so they use a little force to try to get things calmed down, but it just wasn't turning around. Right.
Scott Benner 4:46
You were three for perspective. I was three. Yeah, yeah. Gotcha. Are you there? Are you there first kid. No chance. No, I'm in the middle in the middle. Alright, yeah. Okay. So yeah, so when when hitting you didn't make you stop paying then what happened?
Jon 5:03
Well, we ended up fortunately we ended up in Michigan, we were in Northwest Michigan, which now has just exploded. If you've if you've ever been up there, there's a lot of Great Lakes brings in a lot of people, a lot of Clearwater pride around this time there was not that many people there. So fortunately for us, there was a doctor who was affiliated with you of them. And so as soon as they brought me in, he knew he was like, type one diabetes. Yeah, let's get him checked immediately. That quick?
Scott Benner 5:40
Yeah, real quick. Yeah. John, does the microphone go any closer to your mouth?
Jon 5:43
Sure. Sure. I can position. How's that? Is that better?
Scott Benner 5:48
I'm not sure on these your talk for a minute. But the doctor just upon seeing you thought this is type one,
Jon 5:55
running down the symptoms of what had happened and the duration he was just, you know, we that's the first test we need to run. Right. Okay. And it just was, you know, top of his list. And you have am, as I came to understand, it always had a pretty good med med program. So that was not surprising. In reflection, I was like, wow, we really got lucky because this was kind of the boonies, where we moved, I say, I was just out back, rural Michigan. And so I ended up in the hospital, and on IVs, and things and I remember the beds, the beds were really interesting, because it was kind of I couldn't figure it out, they had the bars to keep you from rolling out. So it looked kind of like a cage. But to me, it looked playground ish, I remember having that thought. And my folks were just devastated. Like, I have vignettes of watching my mother, like, be hit with waves of just just emotion falling apart, I don't know what kind of name to put on, it just kind of really rocked her. And getting pep talks from my dad, like, we're gonna have to deal with this. You know, I'm gonna give you this injection, it's going to happen every day, you know, we had to go through them learning how to inject insulin. And fortunately, the doctor was really, really honest on his toes. And he was familiar with treatment at that time, which was very routine based portions of food timing of insulin, you know. But other than that, it was like p&l sticks. Yeah. If you tried to do move outside of the bounds of the of the program. Um, so yeah, those are the first memories.
Scott Benner 7:56
Right? That's fascinating that you recall anything from that time? Really? Yeah. I don't even I don't know. I'm starting to wonder even about my memories in general, I'm starting to think that my memories are just from photos that I see more frequently than other photos. I don't even I don't even know like I you know, I key in on certain things that happened when I was younger that I feel like I remember. But now if I look back, there's a photo of it. And someone told me a story about it. And it's just very interesting how that all how that works. Because I don't think I remember a damn thing from when I was three years old. Not
Jon 8:34
at all. Yeah, yeah. It's not a lot. But he's, you know, these these moments were like, really, really high stress. And the information is bolstered. Very verified to asking questions about it. Like I've hit my parents. I've been like, do you recall? Was this true? What was you know, what happened? Did? Was mom unable to give me that first shot herself?
Scott Benner 9:01
Stuff that you think you remember? You're not sure of them? They? Yeah, they can kind of come in and back it up for you one way or the other?
Jon 9:07
Yeah. Yeah. They verified it. I mean, at the same time, you know, I'm a really, really delicately wired individual.
Scott Benner 9:17
How so? How so just
Jon 9:20
while just stress has always been a prime component in my foundation. So my attention, you know, with your average stress, your response comes like a hyperfocus. Attending to things in your environment. And I've always been a guy who's looking for the next hit to come, you know. Even just meeting people like I pre I Bolus before we were talking because talking to strangers will shoot me up to 200. If I
Scott Benner 9:54
don't, you're anxious right now. Am I right?
Jon 9:58
We always Yeah, just Talking to people right could be us playing guitar in the park and harmless 91 year old man came to talk to me four days ago and my blood sugar shot up to 200 You know, always due to anxiety always been like that. As long Yeah, yeah, yeah, that's, uh, that borrowed that phrase from really, really nicely. I thought that was a good way to put it that yeah, just really delicately wired. Like,
Scott Benner 10:32
no, I understand what you mean. I do. So. So this is your whole life, diabetes, and you're doing things very old fashioned ways. I would imagine you don't get to faster acting insulin for probably cheese. 10 years maybe? Yeah. Is that right? Yeah, I
Jon 10:53
was on, you know, pure pork. You know, NPH long, you know, the story of the waves. And the timing the waves of peaks and these kinds of things and eating around them. Yeah. And blood testing only happen when you went to the hospital for a really long time. Right?
Scott Benner 11:14
in that in that 10 year timeframe. Did you ever experience dangerous lows or anything like that?
Jon 11:22
Constantly, constantly. Night terrors were a regular occurrence? And you know, a couple of seizures
Scott Benner 11:34
from low blood sugars. Yes, yeah.
Jon 11:37
Yeah, these kinds of things. And by the time we hit pubescence, it really, really, really got hectic.
Scott Benner 11:46
Is this win? Like, is this when like, the other part of your story kicks in? Like I'm trying to figure out? I'm looking at the things you talked about when you first came on? And, and the list of things that you sent me here? You know, so, like, it looks like drugs and alcohol. Was there some self harm?
Jon 12:05
Yes. Yes, yes. I've carved things into myself in high school, attempted suicide, three occasions?
Scott Benner 12:19
And when does that when does that begin for you? Like, when does that turn happen?
Jon 12:24
Um, you know, I think it's just the bag got too heavy, but I was aware of it filling pretty early on. You know, I think the circumstances, I don't want to point the finger of blame at anybody, because humans are just really, really complicated. And if you're around long enough, I think some of those knots become on tie, right? So always hold out. Hold out for hope. But, you know, my dad was like, Vietnam vet and former police officer who had gotten two PhDs in psychology. So he's, like, really complex individual, he's really, really violent. You know, my mother. And her family did not get along, there's not like a lot of support. There's a lot of silence and willpower. And for a person kind of composed, like I am, that just doesn't work really well. Like I would say, I would characterize myself as a tough individual, and, you know, have a deep well of willpower, but the use of force threats, you know, these kinds of things like I've never been about that, right, but that was in the house a lot of time and that started filling the bag up and it was diabetes centric, you know. So like I remember i i still like a bear claw. Okay, out of it wasn't Dunkin Donuts at the time was the different donut company that later became Dunkin. But I still a bear claw and I remember you know, getting picked up by the throat and slammed into the drywall and breaking even punches thrown in my head Chuck across the room, you know, that kind of thing. For you know, getting out of the routine, stepping out of the routine.
Scott Benner 14:33
And you can you tell me how old you are around that
Jon 14:38
as like eight or nine. Okay,
Scott Benner 14:40
so you stole a doughnut. And you got you got your ass kicked?
Jon 14:46
A Yeah, I think I think as theft is, isn't it? I mean, I don't know why I characterize it as stealing. I gotta think on that one. But it was communal doughnuts for the family.
Scott Benner 14:56
Oh, wait a minute. Oh, I'm sorry. John, I Had you like a ninja slipping into a donut shop? Yeah. So this is at the house. This is just a box of doughnuts.
Jon 15:08
Yeah, this is a box of doughnuts. It's a community pile. I don't have no idea that's interesting that I was like I stole it. But it was it was the family box of doughnuts. And I was like, today's the day, the bear claw was mine. I'm gonna taste what that glaze does. And so I took it out of the box, and I stuffed it under my shirt, which is really uncomfortable with all that. And my dad's like, he was like, intelligence officer, you know, and he's a former cop. So he like stopped me from the woods watching me pick my head out to eat it. Right. And I heard in the leaves crunched and I chucked it under the stairs at the back of the back door. We had not built a patio yet. This is when stairs I just chucked it like a Frisbee right? He calmly walked over and picked it out, looked at it. He's like in the house. went up to the room and just Yeah, I got beat up a little bit. For that.
Scott Benner 16:14
John, do you think? Well, a couple of questions. Sure. Were there always doughnuts in the house and you just weren't allowed to have them?
Jon 16:23
As I got older, and the science evolved, you know, because your time during this era. Your even your Basal dose had a long contours still does. But but we're talking hours. Yeah. Right. So you can't stack insulin. You know, there wasn't advice, right? Because then then you're like, you're going to the waves are gonna double up on you. It's gonna get closed out and you're gonna just die. Yeah, get pounded. Right. So there's no adjustment. So back in this time, that was the program as things evolved. I was like, allowed plain doughnuts.
Scott Benner 17:04
So in the in your memory? Is it the is it the taking of the donut? The sneaking, is it the eating something that they thought he thought was going to impact you poorly? Or was it him losing a doughnut? Like do you have any context for what he was mad about?
Jon 17:25
I think it's fear. You know, if I look at I think if I look at you know, the way a lot of our people are wired. Fear is a driving thing. And and it's a regulator. And it's adapted to keep control. And I believe that he saw me as a something that needed to remain viable and that I was compromising my own viability.
Scott Benner 17:57
Okay, so eating the Doughnut was going to hurt you. He needs to scare you into not eating that doughnut, precisely. But you describe yourself as needing the exact opposite input from somebody.
Jon 18:10
Yeah, it kind of, you know, again, it's the 80s We had neighbors doing cocaine and we didn't know it. You know, like, there was a bunch of stuff going on with adults. Bootstrap theory was huge, running rampant. You know, like, pull yourself up. You know, Swartz, Nagar and Rambo are like, on TV, right? They're all like, pumped up. And like be a man do it. So there wasn't a lot of talking. There wasn't a lot. A lot of coaching.
Scott Benner 18:41
Yeah, no, I was alive then to John. I know.
Jon 18:46
Yes, yeah. Yeah,
Scott Benner 18:48
I'm aware of, of how force was used to, I guess, create compliance. And then compliance was somehow seen as the end result, like nobody was trying to teach you anything or or change your mind. They were just trying to put you in a position where you wouldn't do it again.
Jon 19:13
Yes. It does. Yeah, it's absolutely true. And the I think the the ancestral culture feeding into that, too, was one of children not really being led, like you're working on the farm. Accident. So are your teachers. Right? Yeah. You know, lose a finger. It won't happen again. This was not outside the realm of everyone's experience. Yeah,
Scott Benner 19:43
it is an interesting conversation. It's not really for today, but that, as the world gets easier, and people's lives get easier, they do have fewer and fewer teachable moments. And there is no one I mean, in another generation or so there won't even be enough. I get the way I'm saying this is gonna come off wrong for a second. I'm not saying we need more of your dad. I'm not saying that. But what I am saying is that guys, like your dad are gonna be gone pretty soon. Yeah, you know what I mean? And, and maybe that's good. And maybe it's a, maybe it would have just been better if your dad would have understood better how to handle you, but still had a kernel of that idea in his head of, you know, you do need to teach people to how to how to steal themselves up and how to how to be responsible for themselves. Like there's a balance in there. Obviously, we don't want we don't want responsibility and fortitude to come from you ending up in the dining room from the den. You don't I mean, but, but but but somebody, but where does that come from? I'm a parent. And I, I've wondered about it for years, like, Where do my kids get their experiences from? And now, you know, every kid you talked to seems to say that they're anxious, or they feel stress. And, and I mean, I don't, I didn't know what anxiety or stress was, I'm sure I had it. But I wasn't aware of what it was as a child. I mean, if you would have asked me as a kid, do you feel anxious? I don't know that I would have known what you were talking about. And now I don't think you can find a kid who is not aware of that.
Jon 21:23
Yeah, that's, you know, to be honest, I didn't know I was anxious until 10 years ago, I don't know what that was called. Yeah, the vernacular, the attention, the coaching the, in the conditions, you know, to treat it, to deal with it, acknowledge it, you know, all those things have changed drastically,
Scott Benner 21:45
right? And so there's a moment in your life where someone, you needed someone an adult, to see your situation? And say, Wow, John, is I mean, I don't know what they would have called it back, then they probably would have said, John looks nervous, you don't even know or something. I don't know what word they would have used. But he could use a hand here. And not a hand in his head, you know, but but a helping hand. And then when that doesn't come, is that when you start self medicating yourself?
Jon 22:14
Well, it just Yeah, I think, you know, I didn't I don't know I kind of read resigned myself, in part, I had these. Every time I was hospitalized, I had these conversations with myself. You know, I had some rough stretches that ended up in the hospital, I would have these conversations about tapping into my own will to persevere, to get myself through it. And every time I did that, I took more mental responsibility off my parents, because I saw how it impacted them. You know, they're like missing work or their stress. Or they'd be like, you're sick again, you know, this kind of thing. And I was like, well, that's not good for me. And it's not good for them. Yeah. So I'm just going to go ahead and do it. I never thought that it was anyone else's responsibility or hoped for that, or, and not necessarily. Responsibility isn't the best word. But I never thought I needed help. You know, at the same time, I would find myself sometimes going to bed saying Help, Help Help Help Help over the, you know, the over periods of
Scott Benner 23:26
time, just under your breath, really? Just under your breath. I need some Yeah, yeah, yeah.
Jon 23:30
And you know, I was having panic attacks, right. And I'm like, I don't but I didn't know what that was. But I would say that or you know, had these little spurts of compulsive behavior right?
Scott Benner 23:41
For instance. Give an example
Jon 23:45
well, just with having conversations in my head about how I didn't do something right or control the situation well enough bad grade was late. Pick the wrong belt shoes aren't tied and start talking to myself you know, so I was not really well received socially. Okay, no, and under those conditions I just I thought that the way forward was just You just continue to well through it and you'll be alright. Yeah. Well, I think it would have been ideal to have an adult there to be like hey man
Scott Benner 24:25
Yeah, I'm asking in hindsight like what does the alternative to I mean, obviously what you were told just get get get past it get over it for keep fighting. But do you have any gift children now yourself? I do. I have to All right. So what would you tell them in that situation? If they were in your situation?
Jon 24:46
That you my first thought was was to just not even have them in that situation? I would, I would never create conditions or be like, I'd be like if you encounter any of these, right? Well, what if they Toxic ideas get get out of there. And well, what if they just felt like they were failing something? And it was that it does happen?
Scott Benner 25:07
Yeah, right.
Jon 25:09
Yeah, that's I just tell them that failure is the is very, very significant and important part of life, it's like, embrace it holy.
Scott Benner 25:20
Do you think people believe that when you tell them that?
Jon 25:23
No, but the, I think over the years, what's theoretically turned out to be true is if you have it in the body, somewhere where they can experience it in their body, I'm not talking about abuse, like hating people, like you feel bad, you know, bad stimulus. But fortunately, both of my kids are athletes. My son's a rock climber, for example. So he knows about process and he'll, you know, hit. Don't try to tackle and problem on the rocks. And it'll take him sometimes two or three weeks of falling off just trying to get that one hole. Yeah. But then he finally sends it. And if I feel like if you have things like that in your life to, for me, the physical component was huge to actually embody it, the process of failure and transforming that into an understanding, I don't want to say success, just an understanding of what wasn't there before and how you move forward. And that's great. And both the kids have that. And they have me on the side, saying what I just said to you, and I really verbose and annoying. So I you know, that's another thing. I think that adds stress to him. You know,
Scott Benner 26:49
you think you talk too much. Oh, yeah, way too much. Do you have a feeling like you know, how things can go wrong? And you want to make sure people understand what those pads are? So they don't take them?
Jon 27:03
Oh, absolutely. Yeah. Yeah. Yeah, that's, that's definitely part of
Scott Benner 27:08
the fuel. It's crazy, though. Because they still have to have their own experiences.
Jon 27:12
They can't fall out of the tree no matter what we do. Yeah. John, it's one of the real,
Scott Benner 27:18
it's one of the real shortcomings of human beings, is the thing is that they can't just be pointed backwards for five seconds and said, Hey, look, do you see this tail of, you know, of Whoa, here, don't do that. If you don't do that you can skip this whole part of life and move on to this thing. And, and we can't we can't do that. Like, it's just not, you know, it's not, I don't know, it just doesn't work for some reason i You can you can explain things. Try to put them into context. You can, you know, bring them up in the moment when they happen. And still at all, I don't think that in that moment, you can turn someone ship for them. I think, you know, I think you can show them the you can show them the skyline, right? So they can look out and and see the what is it the horizon line and think, Okay, well, maybe there is something out there that I can't see right now. But he might be right, that's the direction to go in. And you have to, you have to hope that something you say today impacts them in the future, because it just very nothing works like a television show. Like nobody has an aha moment where they're like, Oh, my God, the old man in the park was right. I could go home and apologize to my mom right now. Yeah, that just doesn't work. But at the same time, you know, I heard you say it earlier, you tried to put your dad in the context, you know, veteran of a terrible of a terrible war, and a police officer on top of that. So his job was even to tell people what to do. And in his line of work, I'm gonna guess if people don't listen, they die. And, and if you're forceful enough with people they listen, those seem like those were probably his his lessons.
Jon 29:05
Yes, yes. And the longer you're at, I think, the longer that you're in that position, and that's in the exact account. And I think it's, you know, the longer you're in it, the more you're going to get burned out. Your patience is going to shorten it, I'm sure. Do you think yeah, it happened to him? Yeah. Do
Scott Benner 29:26
you think he had PTSD? From fighting? Oh, yeah.
Jon 29:29
We used to, you know, I used to come out to use the bathroom at like, 3am. And he'd be crouched behind the couch looking for Charlie. Oh, my God, you know? Yeah. You know, and my mom would have to come out and wake him up. If you went up to him and public without signaling like, Hey, Dad, if you just touched him, you'd have an elbow. Two inches from your face. He
Scott Benner 29:54
was he was always ready to fight. Yeah,
Jon 29:56
yeah, yeah, yeah. You just you know, Oh really, really tightly wound for good reason.
Scott Benner 30:06
Yeah, I'm not sticking up for him, John, but you put me in that jungle and have people shoot at me I'd be tightly wound so yeah, yeah, so yeah, absolutely yeah. So when so what comes first? Does the self harm come first or does the drinking come first
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well, just kidding. Drinking, right.
Jon 34:29
Yeah, yeah, you know, there was like, the bad guy to fool and the agreements that I was making about taking responsibility for myself and taking it away from other people mentally, you couldn't hold it up, couldn't hold it up. And there was all this new information, you know, and I was already aware, like, especially like, you take your common primate experience of being like, I'm attracted to that person. Like, you know, girls, right This kind of thing. I felt like a little bit like Frankenstein's monster, like that thought setting, you know, the conflict between transforming nature and nature's expression, should I be here? Or should I not? We're messing around, we're harvesting, you know, animal body parts to make fluids for you. And why? You know, this kind of thing.
Scott Benner 35:25
You had good real thoughts about that. You were supposed to not exist.
Jon 35:31
Oh, yeah, yeah. Yeah, I was like, my body's trying to kill me. And why are we fighting it? Yeah. And then I started reading the literature, you know, the, the, you know, alienation conflicts with modernity, right? Transforming nature and transforming ourselves and the consequences. Let's start diving into that when I was like, 13. And then right about then I started stealing cigarettes from my mom. And this is night, we, you know, behind all of this, we're talking about peeing on sticks and like really poorly calibrated blood meters, right.
Scott Benner 36:12
So not only are you having an existential ideas, 13 Which by the way, you might have been the only 13 year old that shouldn't have had a library card, but that's fine. But on top of that, your day to day slog is, it's not fun. And it's not particularly helpful to you either, because it sounds like your blood sugars are bouncing all over the place.
Jon 36:35
Oh, man. Yeah, that was a significant side of rebellion. I have a friend still who's you know, I'm 46. He's 46. He's like, you still eating peanut m&ms, because I used to sneak down in m&ms Whenever we get out of the house, like, I would have the money in my pocket, you know? And who knows, I know now what that probably did to me mentally. Yeah. Because again, the body is just primary, like, being able to have the most optimal state of affairs inside. And in terms of like, your just physical baseline, just, it's so important. And extends to everything. I believe that. And back then I just, I had no concept. So as doing that, stealing cigarettes, and you know, listening to Jimi Hendrix, constantly playing guitar, learning how to play Jimi Hendrix. And then so marijuana came in through the door. And then it was just off to the races. I was supposed to go to college and gotten this huge conflict with my father. And mind you. I was so mentally steeled that I was alone. And this was my deal that people used to, you know, like, yell at me threaten me at this point. And I'd be like, just ignore, you know, and they'd be like, this punishment, that punishment. Like I don't even care. Go ahead.
Scott Benner 38:10
Right. You're an island and they can't touch you.
Jon 38:14
Yep. Right. Yep. It's, I'm alone.
Scott Benner 38:17
It's interesting that that started out of your concern for your parents. And then to see where it went to, is disturbing, really, you know, in hindsight, as a person who raised children, so at first, you're like, let me just, this thing's a mess. It's a mess. For me, it's a mess for them. While I'm like just make it a mess for me cut them a break. And then obviously, you're too young to take on all that on your own. You needed other people to help shoulder the burden for you. And, and then by the time you realize you couldn't do it, it was you didn't have anywhere else to move the load to know so you had to find a way for it to feel lighter without putting it down. I mean, yeah, yeah.
Jon 39:03
Yeah. Yeah, that's accurate. Okay. There wasn't even a language. I couldn't even tell you like, this is just too hard. Yeah. There's just no everything was just wallowing in
Scott Benner 39:14
your a teapot with no with no place for the steam to come out.
Jon 39:18
That's it. Yeah, that's it. Yeah. Wow. It really escalated and, and I started having these kind of see scenarios, play out with the parents where we would just say, my mother would be like, I can't deal with him. My father would be like, my father was out on the road like having affairs and working 60 hours a week. So some when he came back, he was like, I'm not dealing with this.
Scott Benner 39:50
Yeah, I'm given other ladies babies with diabetes. Give me a second here.
Jon 39:54
Yeah, it just, you know, you're just like, my god. No one wants to deal and again, symptom of the same thing you just mentioned, like they didn't know how to get rid of their own skin. They didn't even know. If I asked my mother now, if she was ever anxious, she'd be like, no, no,
Scott Benner 40:15
but she was constantly. She's a case. Yeah, sucking on those cigarettes and trying to keep it all together. And I'll tell you, I know, this is generalizing, and everybody doesn't fit this category. But we might be the first generation of men, you and I, at our age, who grew up with some sort of an expectation that we had to be nice to the women we were with. But like, seriously, like, my dad did the same exact thing. Like the second like anything was like, well, this isn't fun. He's like, I'll just go have sex with different women instead of this lady. And, and it just, it was, it's commonplace. I'm not certain it's not commonplace. Now. I'm not, you know, I don't know. I do know people who I mean, I know cheating still fairly. You know, I'm sure it happens. I don't know if it's a coin flip as to whether or not you're being cheated on. But I know you have a decent chance of it happening. But that idea of that that time, it's just something that people won't know if they weren't there. Like there was a time I think I've said it on here before but my, my dad disagreed with something I was saying, I don't even remember what it was. And he wanted me to agree with him. And I held my ground. And he just hit me, and then would ask me after he hit me each time, if I changed my mind or not. Oh, man. Sounds pretty bad. Yeah. And then I fell like I tripped. I think he hit me once and I stumbled over coffee table maybe. And I ended up on the floor. And I remember thinking, Oh, well, here's some respite. He can't reach me. But then he just decided to use his foot instead. And it was and I remember looking up at my mom, who was just in a corner scared out of her mind. And I thought, well, she's not going to help me. And now I have to make a decision. Am I going to tell him what he wants to hear? Or am I going to? I mean, I already took it. Like, why would I give up now? You don't? I mean? Yeah. And so I know how you grew up, man. Like, I don't know, as you're talking, I think to myself, I don't know why I didn't end up drinking in high. It's unfortunate.
Jon 42:21
You're unfortunate. I mean, like that. You're unfortunate that that hurts me to hear. And I don't mean that like you shouldn't have said it. But I mean, that just, I'm so sorry.
Scott Benner 42:31
Yeah, you have real context for it. Like that's just really rough, man. Yeah, no, I appreciate it. It's it's I do I appreciate your your your kind words. I don't know if I'm, I don't even know if Okay, is the right word. Yeah. Right. Like, all I know, is it made me not want to be like him in like that. And I tried very hard not to put that on my family as I got older. But I'll tell you that without my wife, there were pas I would have absolutely tumbled down, because I just didn't know what better way. Like I'd be surprised if the first time one of your kids got crazy. It didn't occur to you to smack them. Because it probably felt like what you do in that situation.
Jon 43:17
You know, those? I feel like those. Yeah, it's I feel like those there's a sense of of rebellion that drives my behavior now to try to transform the situation that it's definitely true. It's the chicken or the egg argument was I suppose to such talk to toxic scenarios, toxic and sense that they felt so far Well, to me that I wanted to change my life. Or if I just naturally was kind of like a peace loving guy. And I've, I've explored both and their extremes, you know, and what do you I just gotta, I just gotta say, I do not like seeing people get hurt. I just don't. I just never have it sickens me to think of not only powerless, powerless individuals, but even, you know, people that you don't like taking a hard hit. I'm just not wired like that.
Scott Benner 44:18
And, Jonathan, I can tell you that I saw, I witnessed my mom cry once after my dad left her. And that one experience that one evening of my life. I couldn't. I couldn't do that to a woman for anything. Yeah, I couldn't bring myself to do it. Like, I'm gonna tell you right now. If my wife was downstairs right now with 10 Guys, and a table full of blow and and lied to me every day about who she was, and then came to me and said, Guess what? I have sex with everybody in the neighborhood, and I'm a heroin addict. And I be like, I couldn't leave I couldn't like I know I couldn't. Because it just because I had that one moment. Like, I saw my mom crumble like she was lower than a person should be. And it broke her. And I don't want to be responsible for making someone feel that way.
Jon 45:18
Now, now me mean either I think that extends to kids too. You know, like, I intuit that especially my son is a lot like I am a lot of the males in the family seem to have that kind of fear based thing is it cultures of biology, I, you know, probably a little bit of both. But the experience of those things, seeing scenarios, you know, like you're describing human through all you know, and with the OCD and perfectionist contour that came with the weird mental exercises to survive. I've just pushed myself to try to stay as far away from that ledge as I can. And do I see it there when the anger really rears up? Yes. Have I raised my voice Absolutely. ever put my hands on people or wanting to you know manhandle them in any way. Never. Never. I just and you know, contact sports violence sports, were a part of my therapy to try to find out who I was to later after I got sober.
Scott Benner 46:44
Well, when did tell me about a little bit about that, that journey. So you said cigarettes weed, then it exploded? From there for context would you go to next.
Jon 46:56
Um, so I had this big fight with my dad. And I ran away. I ran away, I actually took some stuff of his and I pawned it for drugs. And this was like when I was 18. And I ended up eating these mushrooms. And going out in this cherry field and walking around for like six hours, saying, I just want to be good. I just want to be good. I just wanted to get when I came down, I was like, I can't do that here. And this was actually the second time I left first time, I just ran away to East Lansing. And then started smoking and drinking and running with my college aged kids and then realizing like they had lives, they had classes. I thought I'm gonna go to college again. So I tried to last a semester in community college that didn't work out, I ended up in the cherry field on mushrooms. And you know, with them with a mantra, you know, I just want to be good. I just want to be good. And call up a friend in Arkansas that I had met at this semester of school was like, Do you have room for me? And he's like, Yeah, and I took more mushrooms and LSD and hopped on a plane and left. Got down there with $20 and you know, I'm still my parent's insurance fortunately. So I had access to medication. But then from there, I went to like a seven year period of playing in bands traveling across the country and ingesting, you know, all kinds of substances and primarily like hallucinogenics you know, and I had a friend who once we were talking about those days that and she had worked with a lot of people who use drugs and stuff. And she said Are you still there?
Scott Benner 49:17
I am. I'm listening intently. Sorry. Sorry. Don't be sorry.
Jon 49:24
She said you're always trying to get out of your body while most people are trying to live with it or get it get into it, you know, experience life with their friends, be young. Find out who they are and what they want to do and you are always trying to eject out of this they're like it's it but but you don't want to kill yourself. I say yeah, that sounds about right in meanwhile, you know, I'm talking about playing gigs where I've got this anxiety disorder and I eaten so much LSD that I couldn't see a foot in front of my face. And but I could hear myself playing the whole show on a mountaintop somewhere or like in some old commune from some hippies that ran away from the Vietnam draft in the 1970s, right? They had land real cheap in the Ozarks so they also not they're back at your dad. He was out killing commies these people were out partying in the woods. And so I chose them. And, you know, I would just be an all the while, you know, type one diabetic, you know, stuff I,
Scott Benner 50:49
I keep thinking about how poor your control must have been. As you're talking through all this, like, are you putting much effort into the diabetes at all?
Jon 50:59
The only thing that I did was I took long acting, I woke up, I took long acting, and then when I thought I had eaten enough. I would be like, Okay, that's a meal. There's bread on this plate here is that not not weighing not measuring, not counting cars, nothing.
Scott Benner 51:20
But a doctor was still giving you insulin. But were you seeing a doctor for any kind of regular checkups?
Jon 51:27
No, just once in a great while.
Scott Benner 51:30
give any idea what you think what your a one C was? Did you ever get one?
Jon 51:34
Never. No, never. During that time? I have no idea. I can't imagine it was really good. I mean, it was.
Scott Benner 51:42
I can't imagine either.
Jon 51:45
It was it was you know, I was like drinking stouts nightly, and just as high as you can get. And not, you know, I'm laughing but really, I shouldn't be dead. Yeah, know, like, it's, it's now some of the things that some of the consequences, it's not a consequence free story, because I did have run ins with the fire department, like I fought, I fought some of the guys on the Fayetteville Fire Department. And after having a seizure and passing out, that happened a couple of times, and you know, I take them a Christmas card and apologize. But I was just running around, do stuff like that I had. And placing bets, you know, placing bets. I remember we went up to the White Mountains and we were up on the top and I was like I've got these, you know, I've got some forces that are against me and my body and I cannot get them out. Taking all these mushrooms to try to vomit it out. And try to blow my consciousness out through the ceiling to see if I can get around and try to understand what it is like I can't to create it wants me to to not be here. Let's run the bet so stripped down naked. And they have like a rock lined driveway. And you know, you're talking about hundreds of feet down and death. They have a sign up there like this number this many people die here last year, and here's the total number of deaths. And I just ran on that rock wall being like, come on. You want me to fall off and plummet? Let's do this, right. I made it down to camp, you know, showed up out of my mind. Make it in the moonlight and everyone was like, Oh, yeah. Well, I guess everyone wants to you know, like, yes, you're supposed to be here, you know, after I explained what I was doing rambled on, but I was like out doing stuff like that. Not checking blood sugar is not seen in doctors. Yeah.
Scott Benner 54:15
Was that part of it from family was that part of it, too, was not paying attention to the diabetes. Part of you saying like, go ahead, take me if you want, or was that you just not even having any context for how to take care of yourself?
Jon 54:31
Oh, yeah, you know, there's the it's both I never looked I'm sure the the tools have evolved. And they were evolving then I didn't look into it. So there was an absence of context there and I definitely didn't have the awareness I have now what it's like to keep that good foundation in your physiology, right.
Scott Benner 54:52
So what happens then when when you try time and again to get taken and it doesn't happen? What time Is this around for you? Is it going to be a woman?
Jon 55:04
Ah, no, no, no, no. I mean, because at this time, you know, I've been asked about the promiscuity thing, right, like, Did you engage in high risk, you know, sexual behavior? And I was like, No, I didn't want to connect with anybody. I, and we lived through the 1980s, you know, as well, and the HIV AIDS, you know, threat and, and I saw what that did to people. Yeah, you know, and I was just horrified. I was like, Oh, my gosh, we're also vulnerable. The people are trying to connect and express themselves. And they're meeting this no, this is just, you know, so I was pretty locked down in that regard. So of all the trails that I could have taken to, like, reach out to a woman or a partner I did. It came down to me, not wanting to hurt people. I kept disappointing people because I came home and I went to Michigan, I got off all the drugs, but stuck to the alcohol. And I found myself on the back roads at night having bets like if this curve was to take me Go ahead. Like, I can't stop this.
Scott Benner 56:21
Yeah. Suicidal the whole time. Really?
Jon 56:25
Yeah. And just blacking out, you know, time traveling.
Scott Benner 56:29
Cake. Did you dad drank?
Jon 56:31
He did not really. He did not drink. He knew that. His biological father killed himself drinking when he was 29. Which is hard to do. Like you'd have
Scott Benner 56:43
to really? Yeah, it's an effort. Yeah.
Jon 56:47
So he was like, I'm not doing that. But we had alcohol, it's, you know, and all the branches? For sure.
Scott Benner 56:57
How old are your kids? 14 and 16 1416? How do you think they're shaping up? But who do you think they're good? I mean, like, what parts? Are you that are good? Are they keeping in? What things do you think they'll fight with?
Jon 57:15
You know, they have, they're definitely their own people. They're such their own people. I'm, I'm one of those dads, that's annoying. And how I wonder at them, like, they're, they're fucking incredible. They're really, really, really incredible. They are capable of things that I've never dreamed of. And I've kind of adjusted to this place of being along for the ride, because I know if I get ahead of it, and try to direct too much of it or inform it, I'm going to mess it up for him. But I'm a happy guide along the way. But that takes practice and upkeep, and they're just, they're so impressive. You're so impressive.
Scott Benner 58:07
What you made of, I'm just gonna say you made a big leap from your father. And it sounds like he made a big one. It's crazy, isn't it, but just having a tiny bit of context about your grandfather, makes you realize how far your dad came? Like, there must have been times in his life where he was like, at least I'm here. You know what I mean? Like I'm here trying to help. Yeah, he must have felt like he had done quite a thing. Getting from where he started to where he was, and but you've eclipsed that, obviously, how much of that? Do you think? I hear people talk about this all the time, but don't get to ask many people about it. Do you think? How much of that? Do you give credit to the psychedelic stuff? Do you think the mushrooms helped you get past this stuff? Or do you think it slowed you from figuring things out?
Jon 58:54
I've got a spliced view on it. Right? There's definite insights to be gotten from that. But there's trade offs. And since then, since not since dropping it, I've gotten more insights through exercise and breathing and breathing exercises and you know, a steady Hindu standard to Hindustani classical music and watch and listen and ask questions about people's process through that. And I was pointed to an interview with Ravi Shankar who said, In reflecting on what the hippies were doing, he said, Yes, you get insights, but it's a shortcut. It's a shortcut. Okay? It's too much information. It's, you know, a lot of people I think, and this is true for myself, and I'm not branding anybody anything or putting anybody down by I think a lot of people enter the experiment. And then they're looking for a culture to provide them a map through it or the possibilities. While they're engaging in that practice, and if you look to yourself, you're going to find yourself asking for some cultural references. And I think when you look to American society, some of those maps are pretty limited and can be kind of dangerous or disappointing. Some of them can be great, too. There's great experiences to be had. But it gave me some insight for sure. But there are definite trade off.
Scott Benner 1:00:36
Okay. Yeah, so, but so you, you went home, you stopped drinking? Because you felt like you were hurting people who you're hurting your mom? Yeah. Okay. Yeah. And you go home to make it up to her.
Jon 1:00:56
It was, it was, it was just a family. It was my mom, it was my dad. It was everybody was it was it was this kind of like, You've disappointed everybody. We work so hard to keep you alive. You know, you've got this horrible disease, why do you keep scaring people? And why can't you stop? Like, that's a good question. I don't know why I can't stop. Right. So I was like, and then I had friends who were die. Okay, you know, I started hanging around, like, really dangerous people. Which sometimes music will make you do, there's like that. I guess it's always been there. It's not era specific. But, you know, I started hanging out, and I was not like, on their team, don't get the Don't get the wrong idea. But because I was musician, you know, bikers started coming around. And then it'd be like, well, we're having this gathering out the woods, why don't you come jam out there. And, you know, I saw people with like felonies like, slicing each other up and doing surgeries on foosball tables, you know, like being locked in, in a room and then have them making a vow of silence. And be like, we ever hear that you talk about this, you know, we're coming to get you, you'd like stuff like that. So, you know, there was just like, a lot of this dangerous energy that was ending up in these really, really bad consequences. And then I had friends who started to die or like, kill themselves. And I was like, I don't want to do that my family's hurting. I'm gonna go be an academic. This was like, after a tour out in New Mexico. And, you know, I had some insights there. And, and so it's like, well, college is going to fix it. But that didn't stop the drinking. So then it became really, really glaring that even if you're trying to live in a good way, or take a good line, or like, do a legitimate thing, by being an academic, you still can't stop your effed up behavior. It finds you. And so I went into a recovery program.
Scott Benner 1:03:18
Alright. And so when you go, so what's the timeframe between you fencing your dad stuff taken off and ended up in recovery? How long was that?
Jon 1:03:30
That had been nearly a decade.
Scott Benner 1:03:32
Wow. Yeah. So you came home at like, in your late 20s? Yes. Yeah. Your mom and dad's still together when you get there? Oh, yeah. Yeah. How long did recovery go? And did it work the first time or do you have to do it a number of times?
Jon 1:03:48
I never, I never. You know, I woke up hungover. And I was like, I never wanted to drink again. I used to have conversations and these would happen during like the suicide bouts to where I always like, I think my psyche is constructed like a voice chamber. Where I sound off to things and I'd asked questions, I'd be like, am I gonna make it through this? Are you gonna keep me here and be like, yes. You're not done yet. All right, wake up after odd on pills, right? Or the same thing with the drinking. Like, have you got this? Can you take this? I can't do this anymore. You're done. And I didn't drink again. And you know, the following year was cigarettes. Like I'm done with this. Yeah. You know, can you head can you take it and be like, Yeah, and I'm not calling out to any particular entity. It's just having that conversation. And yeah, I did that I went and I found community there for a while. But I also find myself attracted to really rigid personality. Is because that's what I came up with. So I learned a lot about that,
Scott Benner 1:05:04
like your father. Yeah.
Jon 1:05:08
I took on, you know, like sponsors, and people were really, really rigid. And I got a lot of help. But I also learned a lot about myself and where to let go, when to let go of the advice?
Scott Benner 1:05:25
Okay. One, you know, at what point do you think, oh, yeah, I have diabetes, I should probably check on that.
Jon 1:05:39
So it's always consequence driven. Okay, it was always consequent points driven, you know, so
I ended up out on the East Coast. Barely, I had gotten married. And that just was not going well. Two kids, and that was breaking down. separation process starts happening. And lawyers are looking to everything and the diabetes is on the forefront. Fortunately, I did not have an A one C above an eight at this time.
Scott Benner 1:06:24
Okay. So it was like a miracle.
Jon 1:06:28
It truly is. And they they had, you know, I saw I had lawyers who said, Well, you know, the average is they say that he's only at risk. If he gets above an eight. There's more nuance to that. Sure. Right. But a quick web search, we'll pull that up, you can find it. And, you know, that's when I was like, Alright, we got to keep this thing in check. But that put me on the search to try to start exploring my own physiology and the underlying mechanics and, you know, got into therapy, made a great met, met. Great therapist made an appointment, and she read out of the DSM, the diagnostic manual, the fourth edition, anxiety, definition of anxiety, and I was like, I have that. It's the first time I'm hearing that and then started reading up on that cortisol production, adrenaline dumps, all of this impacts blood sugars to all of you know, and started paying more attention. And then realizing that my emotional states are impacting my family, I need to get a hold of it. Right. But there was like an escalating decline going on. I had, you know, my eyes were still good, still passing those basic tests that you have with the doctors. But see, 2020 June of 2020. A couple of weeks out from some COVID related stuff. I was sudden wasn't my stomach wasn't empty. And like I'm throwing up in the ER, okay. And go to the My wife's phone, like, you go to that emergency room like fine. I get in there and the doctors like I think you have gastroparesis. And he prescribes Raglin it's like you need to follow up with a gastro. As specialists, yeah. And get this checked out. And we're going to notify your doctor was like, all right. And then there was a nurse there who is like in the trenches, battle scarred nurse from Boston. She's like, this is how it goes for you diabetics. That's the horrible Boston accent but I still remember how she said it. She was like, This is just This is it. Sad goes it's unfortunate but you're going to if this is, you know, like okay. And from there it was, you know, confirmed by two specialists. So your gastroparesis is seven
Scott Benner 1:09:27
Yeah. So your, your stomach is so ill equipped at this point to digest your food. Yes, you're vomiting because it's not going down? Correct. Yeah. Well, that'll definitely get you to the hospital. So did the medication help?
Jon 1:09:48
It helped in some respects that you know, I it brought up more questions so it induced motility but not much absorption So I would have food flush flush out and part of the idea, according to one practitioner that I've met with this is like, you know, a bad spark plug in your system. Sometimes if you get a new one in there and you and you and it connects, the rest will start firing up, their system will reset, you don't have to stay on reglan forever, right? So, give that a go. And she's a type one, two, she actually had like a, a transplant, okay? You know, so I leave what she said. But I kept dropping weight while I'm on the Raglin. And then about a month and a half into it, I started getting like tremors in my hand if I was taking it twice a day. So I was like, that's not good. We need to research the side effects. And she had mentioned side effects and I'm like, okay, for some people prolonged use can lead to some really bad stuff. You know it, what do we do to get the signal through. Because at that point, I had been also diagnosed with autonomic neuropathy, I had gait issues as well. Can't stand can't stand without swag and getting getting tipsy. And people just kept giving me these like Xerox of like, here's the foods that you can eat. And they would be like, black and white pictures of like, rice you know, are just like the soft foods. And I'm like, okay, and they're like, just eat less of it and do this and I'm just like, it's just a hope for the best thing like we're really driving without seatbelts now like I really I asked for it. I call it out now I got it. This really long notes. You know,
Scott Benner 1:11:51
there's given you a list of foods like let me let me try to guess. No raw foods. Nothing was skin low if you have low fat no cheese. low fiber to right. Yes. Yeah, yes. Okay. Stuff that will pass through easier. It Yes, it's your stomach. But now you're saying that that on top of the medication, the stuffs going through through so quickly? You're not getting nutrition from it either?
Jon 1:12:18
No, okay. No, not at all. And I'm slowing down and people are getting scared. My wife's like, What is wrong with you? And folks are starting to you know, you show up and they're like, II What are you losing some pounds you exercise and yourself and like, I'm not well. So I started reading up on it. And it's like, there's really not too many treatments for this generally. And I came across an article of a college athlete who had worked with a doctor at Cedars Sinai and he was a heart specialist because that's implicated in in anomic neuropathy.
Scott Benner 1:12:57
Yeah, can I go over that quickly? Or? I don't know autonomic neuropathy occurs when there is damaged the nerves that control automatic body functions can affect blood pressure, temperature control, digestion, bladder function, and eventually or even sexual function. So, yeah, that sucks.
Jon 1:13:21
Yeah, it's really, it's really, there's a lot there. There's a lot to be scared of,
Scott Benner 1:13:25
you know, you probably should have told God you meant right away when you ask them to take you.
Jon 1:13:31
You. That's how it works. Hmm. All right. Wiseacre.
Scott Benner 1:13:36
Yeah, sure. Does that I meant now, not slowly. The bags? Oh, that's crazy. So well. So that's only a couple years ago, you're saying?
Jon 1:13:49
Yeah, that was June 2020. And, and I wasn't getting a lot of answers. It was like this medication kind of hoped for the best. And the stories are that there's all these experimental treatments. They're talking about, you know, like electro stimulation of the brain stem, like being the next big medical intervention. And there's also a rise in it in the past couple of years and I'm seeing little kids, I mean, getting it early on and I'm like, Whoa, getting gastroparesis. Okay, you know, I'm just like this is a really supposed to be a long term thing and the treatments aren't there based on the people I'm talking to. So I ran across the article with the with a college athlete and she was like, I treat it with exercise and this practitioner and Cedars Sinai the heart specialist says keep doing it, and it's working. And she had according to the narrative that was published by by like a large media outlet is like seeing the something you know, She had been to Canada and done all these experimental drugs and all the stuff that was on her last leg before, he had suggested that she had gotten along relatively well and had a slow decline into it because of the exercise. So I was like, I'll take note of that, that started reading about aging as a male and nutrition requirements and all these kinds of things. And I eventually landed, to where I cooked everything in a crock pot, because it's almost like pre digesting it for you. And it's high protein bass, I discovered that a lot of the soft foods that were carb rich actually made the gastroparesis worse in the nausea worse, okay, I would have like, I started getting neuropathy in my hands and feet after eating, you know, bouts of it. And so I started doing that, and then created a schedule based on experimentation and trial and error where I start the day doing breath retentions which jumpstarts my system and gives me kind of like a reset, actually will turn my digestion on, walk, eat protein rich meals, two to three times a day, eat my weight in grams protein plus, and lifts at 10 o'clock at night. And I continue to drop weight, but have been holding out like 170 ish for maybe about five or six weeks. Visiting doctors and they're like, you you know, if you get down to 160 or below we're gonna have to talk. Agreed. But for now, I've been holding through there but do not have the gait issues I'm able to digest food and push it through my system and absorb it sometimes takes five or six hours for the stomach empty but it's working. And my one sees like a 5.2
Scott Benner 1:17:24
Well, you ever tried putting like a digestive enzyme with your meal?
Jon 1:17:28
Yes. Yes,
Scott Benner 1:17:31
that helps as well.
Jon 1:17:32
Yeah. Now I've run the controls you know with because my mom's like you she she's she's the first to the door with with you know the supplements kind of like I will try it. I believe that what's working what works best is connecting the signal from the brain to the body and engaging in problem solving activity physically, which is like weightlifting and the and the breathing. That's that's been the constant so far. If I don't do it ever run the controls. And then like, I'm not going to do and see what happens. I'm right back where I started. I don't even get in a day reprieve. Right. I will be in the yard throwing up more and start to get lose my balance. Yeah.
Scott Benner 1:18:36
Have you changed? Did you change your diet at all?
Jon 1:18:41
Yes, yeah. Yes, I had to because the carbs the carbs just made the symptoms worse. You know, I discovered that and then I was like, Alright, what's more dangerous to lose fat or to lose muscle? still lose muscle? Because then you're really bedridden. Yeah. And, you know, that is that is part of the channel that activates the channel. It's a direct signal to the brain. It's very fundamental.
Scott Benner 1:19:19
Through all this, you mentioned at the beginning of the problem that you thought your marriage was shaky, but then you mentioned her later. So has that been affected by any of this? Or have you figured something out? I remarried. Ah, picked up better person. I'm just kidding you. Okay, so the first marriage that you mentioned, did did dissolve and you're, you're someone else Now I say thank
Jon 1:19:45
goodness.
Scott Benner 1:19:45
Okay. Because you're married. Because you're married. You're dead.
Jon 1:19:50
I'm married. It was a I will just go ahead and say is difficult personality. Very difficult personality. but not for the kids.
Scott Benner 1:20:05
was the primary motivator, kids with you or with her now? Ah,
Jon 1:20:10
we had kids together. And and they ended up with me. Yeah, okay.
Scott Benner 1:20:17
Okay, so the two children, you talk about her from your first marriage? Correct gotchas. I understand. Wow, Jesus, Jonathan. That's a lot. Yeah, I Are you okay? Yeah, yeah.
Jon 1:20:30
Yeah. And it's all really, it's all really weird. You know, and I think that the one thing about it, especially think about how this relates to you and your mission. I remember the cutter episode, when you were talking about the describing all of these interviews, it reminded me of Mickey Hart's description of his drum timeline in his room. So the percussionist I, how it just became this kind of like, huge beast, right, it became an organism. Not not a beast, but an organism of its own. It's this kind of like running dialogue, and it's got all this different timelines associated with it, different cultures associated with it, including technology, including cultural orientations, personalities, all these kinds of things. And accessing that has been super helpful, because I just remember a culture of silence. And do it yourself and pick yourself up by your bootstraps, don't talk about it, try not to be weird in front of the other kids, all these other kinds of things. And I'm like, the resource that you've created, that you've co created, facilitated is just phenomenal. So like I'm doing okay, well, based on on my own metrics, right. Yeah. But But in talking about this with you, yeah, I'm doing really good. Good. Really, really good. Well, I mean,
Scott Benner 1:22:16
it's also nice to hear that you enjoy the podcast today, because I did get a review today that said that the podcast would be much better if I spoke less. So.
Jon 1:22:24
Come on.
Scott Benner 1:22:28
The first thing I saw this morning,
Jon 1:22:31
I don't say I don't I think you've got I think you're really wise individual and after, you know, after hearing, I'm a social researcher, too. I consider you a researcher. And I think like, you're used to the ebb and flow of conversation where things might go and and have great ideas about the information that needs to be put out there. And and while letting people beat them.
Scott Benner 1:23:02
I appreciate that. Thank you.
Jon 1:23:03
So I enjoy it. And I think it's a great I think about my mom, like anytime someone posts in there about a recent diagnosis, if there was even one yesterday or within the past couple days about a young person, I think nine getting gastric freezes. I really experienced the horror and yeah, just feel awful. I just feel awful. But then I'm like, you know how many awesome parents there are, who are just ready to help at the at a keystroke? And how much information in this backlog of expert advice and experience? None of that was around when I was coming up?
Scott Benner 1:23:48
Yeah, it would have been it would have maybe made a difference for you. That's for sure. Although, I mean, this whole thing got put on you pretty quickly at a young age. I mean by yourself, of course. But it sounds like but you know, it's certainly it's a two way street, your parents probably didn't know anything about it. There wasn't a lot of great direction. By the time there's any good knowledge about diabetes, the kind that was really going to stop, you know, things like this from happening in the future. Your parents were probably well out of it by then. Just it's hard to think about but you just it's bad timing. You're just diagnosed at a bad time, you know? Sure. Now, yeah. And now there's, you know, now there's just more there's more ways to talk to people. There's more people who are willing to say things out loud. And there's more people who are looking for help. So it's a kind of a golden age at the moment for for information to transfer back and forth.
Jon 1:24:50
It definitely it definitely feels that way. And it feels like that culture is even going to I still take daily injections. Um, I can't like, pumps just don't work for me, you have got like too much scar tissue and you know, like kinked, cannulas and all this kind of stuff. But you know, people have gotten so adapted to these new improved better ways for most people, that it's become a new vernacular, even going into the doctor's office. And it worries me to think about parents who parents and individuals who are diagnosed and I'd see what putting a lid on stuff has done in my own life for people around me involved in it. And for them to have a place to come to be able to hear other people tell their own story, but to just even vent get support, you know, about the end was school lunches, mental health, all these other kinds of things. What how do you put a price on that? Like, I've seen what people have done to themselves and how they've lasted without it. Snap? is typically not that good. Like, I'm grateful, man, I'm real grateful.
Scott Benner 1:26:14
No, I, I appreciate your saying. So because it's, it's very needed. And it's one of the last things you seem to be able to drag people towards, you know, it's, I think everybody feels like eight year old you. Like I can, yeah, I'll do it. I can do it. It's okay, I've got it. I somehow we get confused between being able to accomplish something, and having to ignore how it feels to accomplish it. If that makes sense or not like there, yeah, you can, you can be honest about what the process is doing to you. And still make it through the process. It's almost like people feel like if they give it a voice, that it'll run them over. And I feel like that the opposite is true.
Jon 1:27:02
That's a that's a really, really insightful.
Scott Benner 1:27:04
Yeah, I sentiment, but how do you make it? How do you make somebody believe that because once you open your mouth, it's going to happen, whatever's going to happen is going to happen. So they hold it inside thinking, I'll go with resolute resolute will work. And that, obviously, I mean, you said it so many times, right? Like the bag kept filling up, you didn't know it was filling up, he didn't know it was getting heavier, you didn't know what to do with it. And that's going to keep happening to you. To understand that you can you can take things out of the sack by just saying their name out loud, saying, you know, this is hard for me to do, and it gets a little lighter. Or I'm worried that I'm not going to be well for my whole life. And it gets a little lighter. Like saying those things don't doesn't make them come true. It's um, I know a person. If you joke about cancer, I realize cancer is nothing to joke about. But if somebody makes a flippant comment about cancer, there are people who get like, uptight like you've just wished it on somebody or that yes, it's going to happen now because you said it. You know what I mean? And I always respond to anything like that. I always say, Listen, if I was in charge of that stuff, I would immediately be joking about being taller and more handsome. Like not not, you know, I mean, I have no sway over whether or not a person gets sick, or is healthy or is happy, like What you say doesn't make things just appear. But I think people have that. I think they have that. It's not a fear. It's a it's a word that I've I'm usually not capable of coming up with. When you're scared of something happening isn't like a superstition, superstition, I can never think of that word Jonathan. And I always imagined I can't think of it because I so don't believe in it. I've never used it in context before. But people have such a superstition, that they don't want to say, I have diabetes, and I'm afraid I'm gonna get a complication. Or I'm afraid I'm gonna die alone at night or that no one's gonna want to marry me, or whatever the hell it is. They're afraid of. They don't want to say out loud, all those things weigh on them. And then it's almost becomes a self fulfilling prophecy because you can't take good care of yourself because you're so burdened. Yeah, you know what I mean? Yeah,
Jon 1:29:20
yeah. Yeah, I felt that personally. Absolutely.
Scott Benner 1:29:24
Yeah. I mean, and to look at it from the other side, if it happens to so many people that isn't that just the human trait. And if so, I don't know then is this the path like do you have to like willfully knock yourself off the path of human trait to doing what actually works? Like are we wired in a way that some that sometimes anti what we need?
Jon 1:29:54
Yes, this is Mary Shelley's predicament. Really? Guy Yeah, this is this is, you know, if are we creating a Frankenstein? You know, Frankenstein's monster are we messing with? What is nature in that context? And again, it's an outgrowth of a of a generational conversation like, yeah, you and I were never exposed to parsing those sentiments.
Scott Benner 1:30:23
No, no one would have thought about any of this. Now, the way of
Jon 1:30:27
men and women and you know, all the, like, these discrete categories are like Hemingway and sad marriages with booze, you know?
Scott Benner 1:30:39
No, it really is. I mean, it's kind of obvious, like, so if it's, if it's, if it's the Frankenstein problem, it's, it's, it's that problem psychologically, that you keep adding turmoil to your life, but just quietly in your head. And then you torture yourself with it, because you don't let it you don't let it go anywhere. You don't deal with it, or throw it away. And that and then, and then at some point, it becomes overwhelming. And you end up saying to somebody, I'm, I'm, I'm anxious, like, Well, yeah, well, no shit. You know, like, you know what I mean? Like, you've, you've stuffed these things into your head, maybe not on purpose, obviously. But you've stuffed all these problems in your head. And with the teapot analogy, you've given them nowhere to go. You're a powder keg at that point. Yeah, yeah. So there's
Jon 1:31:27
a lot of truth in that it just seems that what simplified it for me is that, you know, we're products of biology and culture and culture can get really, really weird and really strange, scary, it can produce feelings of disgust, so can biology. But at the end of the day, it's it's adaptations at adaptations are, what we're looking for. They have trade offs, and the trade offs are mental. Yeah. Now, I don't feel like I'm messing with nature anymore. And I have to keep it a secret.
Scott Benner 1:32:02
Yeah, well, you're definitely not I think it can become, I think there's this this feeling that life should be perfect. Like you don't I mean, you get the baby, and the baby looks perfect. You think, Well, if I don't make any mistakes, then this perfection will continue on down its path of perfection. But that's a fallacy. And so, you know, I think it would be more healthy, to consider that things are going to occur, that you are sometimes going to be great at dealing with, and sometimes you're going to be terrible at dealing with. And you might have to make adjustments on either side of the equation, like sometimes, maybe you have to adjust who you are to get through a thing. That is that is static, that you can't move, it's set in concrete. And then maybe sometimes, the thing can be changed a little bit to meet you where you exist, but that you have to always kind of on the fly, make that decision. Sometimes it's me that has to be flexible. Sometimes the situation has to be flexible. Sometimes other people in situations need to help me and sometimes I'm going to have to realize they're not going to help me. And I'm going to have to help them. And you can't fall into one of those things. Because those those pots are not the answer that it's all those things mixed together that allow you to kind of bob and weave through life like you just have to. I mean, there's so many simple ways that people say right, keep your head on a swivel, stay on a surfboard. I don't know, whatever the hell you want to say, right? You just need to be that little Hawaiian doll on on, you know, on the dashboard. Like you just yeah, the car rocks one way you rock the other way. That's just, that's it. And I don't know how you. I don't know how you teach that to people. I don't know why I have that. Yeah, there are times I think that a lot of these conversations are just me trying to figure out why there are some things I'm good at, and some things I'm bad at. And why do other people get some of those things and don't get the other ones? And can you just give them to people like like is this podcast? When it's all said and done and over? Is it just a frickin waste of time? Like, will it ever help people who heard it on day one? Or is it going to more help another person down the line? From the person who heard it? Do you really mean like are you fixing something in the moment? Or are you giving that slight turn to go back to earlier where you just kind of point people in the right in the right direction? Show them the horizon line even though they can't tell where the hell they're going yet? Give them enough trust to believe that if they move in that direction, they'll find the answer. I don't know. Like I have no idea all I know is I think talking about it makes sense.
Jon 1:34:46
It does. It does stories are powerful. There I know for a fact that there has been motivational moment LIS moments listening to and defining The content that I've gotten from the podcast Oh, that's what that is like the tendon in my right hand is hardening up. You know, the publisher who's had it for over 30 years. You okay? It you know, things like that are beyond helpful. And we like stories. We like stories, you know? They're just important guiding forces.
Scott Benner 1:35:28
Yeah. Yeah. Well, then I will just dedicate this episode, then to the person who sent the review that said, I talked too much.
Jon 1:35:36
I think you should talk more.
Scott Benner 1:35:39
You know, what I honestly ended up seeing after what I thought after I saw it was the podcast is for who it's for. There. You know what I mean? You can't make somebody like a style or not. And I certainly wouldn't change for you know what I mean, I know how many people listen to the podcast today. And if one person said, I wish you wouldn't talk as much, you know, like, alright, well, yeah, I can't change for the one person. I think I'd be alienating the others. And it's just, it's one of those things, like, in my mind, this is what a podcast is. It's people talking, if you know, and it's not just having someone on and saying, so you have a story, go ahead and tell it and then never adding context or, or breaking the flow of the conversation so that people can stop and think and absorb. And I don't know, I'm not worried about I thought it was I just thought it was funny. And then you brought something up that was just in direct, you know, direct opposition to it. And I thought, Oh, this is a funny timing. So
Jon 1:36:40
and yeah, it's just it doesn't I think, if, if I if I think about okay, thinking back on the episodes and thinking about the moderating the web, the Facebook site, and the evolution of things, you know, the constant updates, all these kinds of things. It takes like a really broad skill set. And, you know, yet, why wouldn't to me, the question is, why wouldn't you want someone who's had over 700 conversations?
Scott Benner 1:37:13
To tell you what they think about the thing you just said? Why wouldn't you? Would I, it's probably a new listener, and they'll either end up hating me or we're getting on board. I'll tell you, I got I got a review a few weeks ago, it's my favorite. Absolutely. My favorite review. Maybe ever, and you would think that my favorite ones are the ones who like I love Scott. But it's, it's not like that. It's um, I can't I wouldn't be able to find it. But it's oh, wait, maybe this is it. I have been waiting for my first full agency after starting to listen to the podcast to write this review. I love this podcast. While I sometimes disagree with Scott, and I do sometimes think he's a little overconfident. He has the the right to be oh, this is maybe it's nicer to me than I thought. Sorry, this isn't the one I was thinking about. There's one somewhere that says I hate that guy. I love that podcast. Like that's the context of it. I don't remember the actual words they use. But that one is my favorite. Because I think wow, like a person found me who I'm not their cup of tea. And yeah, they found the content so valuable. They overlooked that they don't like me to listen. And that makes me proud of the content. Yeah,
Jon 1:38:29
yeah. That's, that's one of the messages is always Yeah, it's coming through strong and especially if you want to get it it will. But I mean, I you know, like, I think you're in a tough position. I don't I would have no idea. I couldn't Bolus enough to deal with the pressure.
Scott Benner 1:38:52
We're I mean, we're up. We're done. Now, Jonathan, we're finishing up like how do you feel an hour and a half later? Do you feel nervous though?
Jon 1:38:59
I you know, the thing is, is like I have I've created a mental space to where I don't detect the anxiety. But I know physically, I'm experiencing it by looking at instruments that measure so just before we clicked record, I was at let me pull this up here. 90. Okay. And as soon as as we got into talking, and I Pre-Bolus, right. For the conversation, not for food for the conversation. I'm now cruising at 149 That's not bad. Now, it's not bad, but it's the adrenaline and the Yeah, hey, let's all that stuff just goes you know,
Scott Benner 1:39:50
I was recording with somebody a few weeks ago. I made these episodes from a pod five. Yeah, with a with a with a CD carry. Forget she's terrific. She's I've never done it before. And I joked, like halfway through the recording with her, and I said, How are you feeling? And she's because she was nervous when we started. She'd never done it before, which you would not know by listening to it. Yeah. And she said, Oh, I'm, like, surprisingly, not as nervous as I thought I said, I'm oddly calm. And I meant that, because we were going over a lot of information that we were we needed to cover, you know what I mean? Like, this wasn't just the, this wasn't just a rambling conversation with somebody. It was, I mean, it's right at the beginning the episodes that tells you like, I was compensated by, by Omnipod, to make them. And so you know, there was there were things that we, they wanted to cover that I wanted to cover, and I needed to get through them in a certain amount of time. And if there was ever going to be a moment where a person felt pressure, it would have been then. But I'll tell you an hour before we recorded, I picked up the list, I read through it very quickly, it was many pages of information. And then I put it down in front of me and I don't think I looked at it three times. And I don't have that kind of brain. I'm not lying, Jonathan, like I don't have that kind of brain. I didn't remember the things on that paper. I ended up looking at the, at the just sort of the titles of each of each kind of part on the paper. I know there's a simple word for that. But I'm, it's escaping me right now. But the header for each idea, I'd look down at it, and I'd start talking. And even I was like, why am I not nervous? I should be like, this is a thing. You know, if somebody's paying me, you know, and by the way, I want it to be good content for the people listening because I that so I don't do that very often at all, Jonathan, and I'm very, very transparent about it when I do. But. But I don't often, like get paid to make an episode like I make an episode. And I and I sell ads on it. So I'm getting paid to make the episode. But that's me. That's just I say whatever, I want this conversation with you and I, I don't I don't care where the hell this went. And you know, ads will go on it. And I have great advertisers who aren't going to who don't send me notes. Like, please don't put me on an episode where a guy tried to kill himself run into a rock wall. Like they don't say something. And they don't say, Yeah, I'm not gonna get a note later, where they're like, hello, devo, Capo pan, could you please not put us on the mushroom episodes? You know what I mean? Yeah, so everybody's really cool. And, but I felt, obviously I felt responsible. Like I said to them, I can make these for you. And not that you care. But this goes back two years, I've been telling Omnipod for two years, when five comes out. I'd like to make episodes to help people get started with it. Because I I think algorithms are going to be really important to people. Yeah, and they were lovely enough to go along with the idea. And, and so but but still, like there was a moment inside of us, like, why am I not nervous? I couldn't, I can't I still don't know. I'm like, I know, it sounds like a humblebrag John, but I really don't understand. And it bothers me to some degree, like, there's part of me that's like, why weren't you anxious? Like, while you were doing that, you I'd taken money from them, like I took the money before I recorded the thing. So like, at this point, now, if I messed it up, I gotta say, Hey, I'm sorry, Here, take this back. You know, I never felt like that. And I, I desperately want to understand that before I die. I want to know, not just that idea, but like, why are there things I'm good at and things I'm not good at? And why does that happen? You know, because they're the same muscles. There's other things I'm not good at that I appear to have the tools for? And so I don't know, anyway, it's a lot
Jon 1:43:45
of fight how you train man. And you've you've had you know, you've been presenting content in person and remotely like, how many talks have you given I just think that there's there's, there's certain muscles that are that are have been built over time. If they weren't there before. Maybe you've had it the whole time, that have been exercised to a dynamic and great extent. So it does not surprise me that you just read a header and then be like,
Scott Benner 1:44:20
I don't know, John, I don't know if we can trust you because it sounds like you had a lot of mushrooms about 20 years ago.
Jon 1:44:26
I've hung out with a lot of interesting people and I've seen just that that narrative play out.
Scott Benner 1:44:32
Yeah. Well, even even conversationally like now. Yeah, you say something? I don't know what you're going to say. And yes, and you've been a great guests like you've been very thoughtful and and well considered and your ideas are not like the poetry you speak in isn't, is an average. But I've understood everything that you've said. And then when No, no, no, it was it was lovely. And then when I I opened my mouth to respond. There's no moment where my I don't hear a voice in my head that says, Jonathan just said this, this and this. What do you think of it? It? Yeah. It just I don't know. Like why. And I know other people that if they were listening to you, and it was their job to respond afterwards, they'd say, I don't know what to say. Like, they wouldn't have a response. They wouldn't have a thought to build off of or, or anything. I just, it's an it's a neat skill. I just wish I had more context for it like you don't I mean, like, if you practice baseball every day for 20 years, you end up being good at it, you know, a little bit how you got there. I have no idea how I got there other than I used to talk myself out of things a lot when I was a kid. But I mean, so we seem like we've gotten past that. Anyway, Jonathan, I'm, that that review might be right, because this is the second episode I've recorded this week, that's gone almost two hours. So that's talking too much.
Jon 1:45:55
I think it's fun. I think it's fun. I liked it. I think it's, I like hearing what goes on on the other side of the mic, because I'm, you know, I'm aware, being an in in the academy, I see how dollars are acquired, personnel are signed on forms are signed, you know, all these moving parts to get one or two questions that are really focused, answered, and then build a 20 year career off of it, right. And here you are, like, you've got a match and a microphone, and, you know, all this, you're pulling experience, you're out working everybody, you know, you're out working everybody like this, people are probably going to be researching your podcasts and doing algorithmic searches of the content, you know, and writing about as many instances as this were was mentioned, or doing discourse analysis, and all this other kind of stuff. It's good to know that there's a human being behind the microphone and and that they're either gifted or they're just elite.
Scott Benner 1:47:13
First of all, I'll agree with you on one thing, I am outwork and other people. That is that I know, I think the conversations are important, I almost don't think it's important if everybody hears every one of them. Because if I have for this week, and you hear two of them, I still have the knowledge that came from the four when I have four more next week that I that I believe in, like just building up. I think people's I think people's experiences. Like I think the podcast is a repository for them, but I sort of am as well. And so. And while I don't remember everybody's story, word for word. I think that's where the answers come from. When I hear somebody say something, I I'm like, I don't know why I know this. But here's what I think about this. And I think it comes from talking to other people. And I will, I'll tell you, if I if I stepped back from this to give myself credit for anything. I am running a major business by myself. And that we had a moment this week. And it's just crazy. I just said we I am the pot. There's nobody except me. But But I had a moment this week, where I was. I was number 10 on Apple podcasts medicine chart, like I had gone past like Robert F. Kennedy, and people who, you know, are famous and have big platforms and have people working for them. And I thought, like, Wow, that's crazy. Like I did that, like completely by myself, the direction of the podcast, like I talked about with cutter is just, it's what I think it should be. Nobody gets into a meeting and tells me Don't say that or say this, or we need to say this more, because there's an algorithm that Google points to like, like, that's true. I've had SEO people tell me do these topics. It's what people Google. And I say, Well, I think they need to know this. And even if they don't know that they need to know it. I believe they do. So we're gonna put out an episode about this right now. It's just it's just a it's a free way to be able to, to work but again, without the without the advertisers. It doesn't exist. So I would have a real job somewhere and it wouldn't be nearly as cool as this one. I guarantee you. So anyway, Jonathan, I really appreciate you doing this. Can you hold on one second for me? Sure. Can
I? First off, of course, we have to thank John for coming on the show and telling that I mean, amazing story. We'd also like to thank on the pod makers of the Omni pod five and the Omni pod dash and remind you to go to Omni pod.com forward slash juicebox. The other sponsor of today's episode of course, is the Contour Next One blood glue ghost meter, all you have to do is go to contour next one.com forward slash juice box not just to get started, you can actually buy them online right on that site. It's super simple. Give it a look. If you're looking for community around type one diabetes, or type two diabetes, check out the Juicebox Podcast Facebook page. It's private and free. It's called Juicebox Podcast type one diabetes. Alright friends, I appreciate your time today. I hope you enjoyed the conversation with John. I know I did. Make sure you're subscribed or following in a podcast app that helps the show and it helps you get new content. And speaking of new content, I'll be back very soon with another episode of The Juicebox Podcast.
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#759 Bold Beginnings: Guilt, Fears, Hope and Expectations
Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
Test your knowledge of episode 759
1. Why is recognizing the symptoms of type 1 diabetes early important?
2. What is the role of insulin therapy in managing diabetes?
3. Why is carbohydrate counting important in diabetes management?
4. How should high blood sugar episodes be handled?
5. What psychological aspects of living with diabetes should be managed?
6. Why is regular physical activity beneficial for diabetes management?
7. Why is it important to have a personalized diabetes management plan?
8. How can staying informed about new research and developments in diabetes care help?
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 759 of the Juicebox Podcast.
Jenny Smith is back. And today we are doing another indie bold beginning series. Today's topic is interesting. There were a ton of questions that all revolved around guilt, fears, hope, and expectations. So Jenny, and I just sort of sat back and had a conversation about those ideas. We worked in the questions from you, the listeners, and we shared our own. I don't know remembrances of different things that we thought might help you get more comfortable with type one diabetes. I appreciate if you consider going to T one D exchange.org. Forward slash juicebox. And completing the survey. That's it. I won't give you a big thing you hear about it every day on the podcast he one D exchange.org. Forward slash juicebox. completing the survey will take fewer than 10 minutes. It'll help a bunch of people, including you, me and other people with type one T one D exchange.org. Forward slash juice box. And if you want to hire Jenny, she works at integrated diabetes.com. type that into your browser. Go find out about Jenny
the Omni pod five automated insulin delivery system is here. And they're the sponsor of today's episode. If you'd like to learn more, or get started with Omni pod five, go to Omni pod.com Ford slash Juicebox. Podcast is also sponsored today by Ian pen from Medtronic diabetes. The in pen is an insulin pen that has much of the functionality of insulin pumps. To learn more and get started go to in pen today.com. Jenny, we're just going to do one big thing today. And that's it. Awesome. All right. So for the bold beginnings series, which by the way, I'm starting to see feedback about online, which is very exciting.
Jennifer Smith, CDE 2:15
Yay, we're finally, hopefully it's yay, feedback.
Scott Benner 2:19
Do you think if it was bad feedback, I would have brought it up while we were recording another?
Unknown Speaker 2:23
Well, you know, you have to give honest feedback when other people would really like to hear a little more about this or didn't really agree with that, or what, uh, you know, honesty is
Scott Benner 2:33
that made me laugh. I mean, I would have that conversation. I'm gonna be honest in front of people, I would have that conversation with you privately, privately. Giving feedback, and really no one likes this, I didn't realize that people are finding it useful in the way that he intended. So that's perfect. Very excited. So today, we're going to hit this one doesn't seem like fun at all. It's a Monday morning. But this one is, is titled guilt, fears, hope and expectations. And there are a lot of
Jennifer Smith, CDE 3:07
questions are mostly like comment, oh, let's
Scott Benner 3:10
dig right in and find out I'm sure it's full with honestly. So I think, you know, I don't even want to give my opinion yet. Like, let's just talk. So the first person said that they're that they experienced immediate grief around diagnosis. Just immediately, like, like a loss had happened. I've talked about this on the podcast before, I've tried to have therapists on to talk about how you manage grief. Because I don't know from a technical standpoint, but it's so strange, isn't it? We just talked about this before we were recording it. Yeah, we did. Yeah. I guess I'll say it here while we were recording. There is a reaction that you have when you get bad health news and bad health news that isn't going to get cured. You know, it's not like, well, you have the flu, just try not to die for six days, and you'll be okay. Again. That kind of stuff. There was
Jennifer Smith, CDE 4:06
when I go back to being the tennis pro or whatever, you go, go go
Scott Benner 4:11
back to your life, this is all going to be fine. But when I was diagnosed, I remember just thinking, Oh, well, we're not going to have the life I thought we were going to have right like like and then over time that you realize that diabetes isn't as difficult as you imagined it's going to be hopefully you get some things figured out. And that it's not. It's not. I don't know, for us at least it's not like somebody chained to art into a post and we couldn't get her off again. You know, we had to just live our life here in this little space. But it still is true that we're not living the life that like when Arden came out and we were like look, we have a baby like in our symbol. You know what I mean? We're holding the baby up and on the hill. This is not my fault was gonna happen. And so you I think that's the loss. I think, I don't know what you think, though, because you were diagnosed at a different time and a different age.
Jennifer Smith, CDE 5:10
I was. And
Unknown Speaker 5:14
I don't, I
Jennifer Smith, CDE 5:15
don't know that I so much had a sense of loss as a sense of significant change. When I was diagnosed in, in the hospital, the nurse educator, was very quick to tell me, I could do mostly anything that I wanted to do. What she told me I couldn't do, she said was very limited. And boiled down to essentially being was something like a bus driver, a pilot, and I couldn't be in the military. She's like, so think of all the things that you really liked doing, and might want to do at this, you know, age that you're at, and realize that you can still do all of these things. And I was like, Well, I probably was never I was not thinking about being a pilot. I wasn't thinking about being a bus driver, or, you know, whatever. So I just felt like, okay, I guess I just have to do these additional things. So my personal sense wasn't so much of a, obviously, I didn't feel guilty. I mean, I didn't have anything to feel guilty about, I'd have to ask my mom, if she had any guilt, or my dad felt any they'd never voiced it if they if they did. But that guilt and sense of loss, I hear a lot of that in the families that I work with. And it it can stick around.
Scott Benner 6:47
Yeah. So Yeah. For me, I was a stay at home dad at that point. And they, we pretty quickly, even though we didn't understand the link between coxsackievirus and maybe being diagnosed. And even at the moment, in the beginning, I didn't understand that Arden had, you know, markers that made her more likely to get type one, two, I didn't understand any of that at that time, right. But I did see, anecdotally she was sick, she had this Coxsackie virus, and now she has diabetes. And I beat myself up pretty hard about that. Because I kept thinking, like, Did I not wash your hands? Did I not wash my hands?
Jennifer Smith, CDE 7:25
Did I expose her some way that could have been prevented? Kept thinking
Scott Benner 7:29
I took her to the wrong place. Like, like, did I get in my car one day and drive to this place for lunch instead of that place for lunch. And that's why Arden got coxsackievirus. And now we're here at the hospital in Virginia, like, you know, and as it's crazy, because it's twofold. It's not something you can control. And it's obviously not something you have vision for that you could have not done. But yet there's that part of your brain that goes if you What is it instead of zagged maybe this didn't happen. And it's hard not to feel that it's almost like you're gonna have a car accident and think if I would have just left 30 seconds sooner this wouldn't have happened. Yes. You know, absolutely.
Unknown Speaker 8:08
Yes. I've only ever had
Jennifer Smith, CDE 8:10
one car accident in my life. I was coming home from from college and the the roads were clear. Except you know what black ice is? Right? Yes. So driving home. And instead of taking the highway highway, I took a road that cut some of my time off. And it was more of like, let's call it a country road, right? I mean, it was paved. It wasn't like weird back country or anything, right. But I had this little renewal Alliance. That was my very first car. The back tires hit this patch that I thought was snow because it was like lightly covered. And I dashed like across the other side of the street and across the ditch. I hit a mailbox and I ended up in somebody's backyard. Wow. So yes, I did. And at that point, I was like, Well, how could I just like, slow down when I saw that snowy patch in the road, knowing Wisconsin weather and whatever, but you can't go back just have to be like, Okay, now I'm more aware at this point, I realized
Scott Benner 9:14
that you'll black ice out of context. When Kelly and I were very young, she would tell me all the time, be careful of black ice. And one day we were driving. And I just started to wiggle the steering wheel and I yell black ice and she and me and jokes are no wondering how we're together. How she didn't just like say like pull over and let me out now You idiot. I've done you know, it's funny. You were talking about the things that the doctor told you or the the educator told you you couldn't do and you're like, Well, no problem. I don't want to be these things. Anyway. Have you ever heard the lady that came on the show whose husband was a fighter pilot, I think and the person told her kid when the kid was diagnosed, don't worry, the only thing you can't do is fly a jet. And it's the only thing the kid wanted to do because that doesn't you know And of course, you know, I think even in that conversation, the woman's like that poor lady like she was like, so sure she was gonna reinforce to my kid that you can do anything. But there's this one simple thing you can't do,
Jennifer Smith, CDE 10:13
you can't do. And that's exactly what it was. Yeah, they wanted to know, so.
Scott Benner 10:16
So it takes me into these next couple of statements, people said, I really needed a lot of hope in the early days. And that is what people are trying to do. And they say, Don't worry, there's only three things you you know, etc, or you'll live a normal life. Just have to count your I think, I think, oddly, that so much of the poor management information that people get in the beginning stems from someone trying to be kind to them. Does that make sense? Because, like, Don't worry, your carbs and do it like they're trying to make it seem easy? Yes. Right. And maybe that's the maybe that's the only thing you can do in that spot? I don't know.
Jennifer Smith, CDE 10:58
I know, I would agree is and especially boils down to the one comment that, I think is it's hard to understand, once you get further into understanding management is the food tide one, you can just you can eat anything, just take your insulin, right. And that is, it's a way to tell somebody, not much has to change. Look, you can keep doing everything that you have been doing. You have to just add these little extras in to the picture. And there's supposed to be a sense of relief, like thank goodness, I can keep, you know, eating whatever it was for lunch that I love to eat. But it doesn't take away from the feeling of the additional things that are really big additional things that we're teaching somebody they now have to do.
Scott Benner 11:58
These next couple of statements. Kind of they kind of hinged together a little bit. This one person said they kept hoping the doctors were wrong. Like they sent them home. I hear that a lot from people. I only went through it for a day. And I know Arden had some sort of crazy honeymoon Day, which I look back now and think probably wasn't even a honeymoon. She just really just didn't need insulin. This one. Right, right. Like they were wrong. And I know they were wrong. I immediately was I called my friend who's her pediatrician. I was like, Hey, she hasn't needed insulin all day. I think they're wrong. And he was so sad. He was like, oh, Scott, like she has. She has type one. She's he's like this will change. Like, just keep watching. You know? Yeah. There's that. And there's this other part here. This person said that there was so much confusion in the doctor's office. And looking back the way she sees it is they weren't 1,000% Sure the kid had diabetes, but they were sure. And she said I just kept seeing the medical people looking at each other and nodding and kind of like talking to each other with their faces, but not saying anything out loud to me. She said she found it very scary. Like what is in that space?
Jennifer Smith, CDE 13:12
And scary in terms of? Are they confused? Are they actually the right people that I should be talking to? I mean, really, you don't want a confused? Look, or these exchanges of eye movement, facial expression between what you're thinking is an educated professional to get an opinion or a diagnosis from you just want the direct information. Tell me what you think it is. What are you going to do to prove that it is or is not this? Just be honest,
Scott Benner 13:50
it's super interesting that I'm going to tell you something personal has nothing to do with diabetes. My mom's blood pressure started to go up a few days ago. So I get a message from her. Hey, Scott, my blood pressure has been high the last couple of days. I call the nurse where she's living and talking to the nurse. And I said, Hey, my mom's blood pressure has been high for four days. Now, what are we doing? And she said, All the doctors gave her a little more medication. We're waiting to see if that worked. And I was like, Well, what else are we doing? You know, are we just gonna keep medicating or until you know, it's like, and she says, I want to get this word for word. She says, Well, your mom has a heart condition. And those don't get better. They just get worse. And all I could think was what in the hell are you thinking saying that to me? Like, like, Hey, you don't know me? Like I took it. I was like, Yeah, I know. Like, but like, that doesn't mean we're giving up on her right? Like she could see the cardiologists couldn't see. But all I could think afterwards was like, the lack of bedside manner. In that statement is fascinating. Absolutely. He was like, hey, what do you want us to do? That's right. What? Something? Could you do something? You know, it's just it was I just couldn't believe that it occurred to her to speak like that.
Jennifer Smith, CDE 15:11
Absolutely. And I think what we've lost actually, not everybody, but I think what there is a loss of in healthcare is a sense of being human. Right? It's a sense of, how would I want this presented to me? Yeah, imagine you're the person sitting there. And I think doctors, you know, and or other clinicians, not just doctors in general, but other clinicians have become so very just blunt, for lack of a better word about this, is it? And no, it's not going to get better. Well, you may want that information eventually. And you may actually sort of know that, you may understand that as an adult, especially, but to have somebody so very cut and dry be like, Nope, this is it. This is, this isn't going to get any better. And we've put a little bit of empathy in that rather than just being so
Scott Benner 16:15
yeah, Jenny, I don't want her to lie to me. But oh, there had to have been a few better ways to say,
Jennifer Smith, CDE 16:23
I mean, even to be able to say, well, we're going to use these types of medications. And as you understand the medications, we may need to titrate we may need to change them. As things change with this type of a health condition. We do know that it doesn't typically heal. And so we're going to have to try things to keep your mom comfortable to keep her feeling well enough, but it will progress. Yeah, I mean, I think that was much nicer.
Scott Benner 16:52
No kidding. I fascinate anyway, so there's a balance between being told the truth and being slapped in the face with some horror, there's better ways to talk about and I don't, there's one,
Jennifer Smith, CDE 17:06
I think, as you say, slapped in the face, kind of with a diagnosis, oftentimes, in a very immersive, you know, emergency type of diagnosis for type one. Many times it's not that somebody's caught symptoms early enough and just come in to the pedes office or to their typical primary care doctor and said, Yeah, I'm not feeling so great. Could we, you do some tests and have some discussion and whatever many times it's very emergent. And then like mine, I went to the emergency room, and I was right there when the doctor told my mom and myself what was wrong? Yeah, there was no like, time in a nice room someplace with like birds outside the
Scott Benner 17:50
human. That's all like, just yeah, that's all I'm looking for from anybody. I'm going to read this person statements pretty big.
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I felt an incredible grief, we had no family history of diabetes, it was a surprise. And I was extremely scared on the way from the urgent care to the hospital, following an ambulance that my daughter was in. Or excuse me, followed by her ambulance ride. My daughter asked what diabetes was. And she said I was like, it's sort of like being allergic to sugar and you need shots. I didn't know a lot. She said she said I wept all night. When she wasn't looking, I thought I can't do this, I really just can't do this. She said I wanted to I wanted someone to come and give me a hug to validate my feelings and my fears, but also that told me that this was going to be okay, that she could live a great life. And that I would be able to do it. A lot of parents have learned to manage well. And you can too, she said that I would have been would have been great if somebody could have said that to me. She can still do everything you hope, etc, and so on, I would have liked someone to tell me that the next few days were going to be hard. And that it would involve sleep deprivation, it would have felt good to know that I could have done it one step at a time, maybe one day at a time that I could have found a Facebook group that I could have shared my struggles with somebody else that somebody else might have known the difference. Sure, yeah.
Jennifer Smith, CDE 23:12
And I think some of that also ties into the rapid nature of discharge upon a diagnosis like this. I mean, in today's world, unless, unless there's something really detrimental within that diagnosis. And they really have to keep you for many, many, many days. Most often. It's an in you might be there one two nights, and you are out and you get rapid fire information. First you get a diagnosis that you had no idea even what it was many times, and now you're getting education, if you will, and you're getting information about all of these things that you're going to have to do again, the factors of life changing, become like a quick like knock on the head. Yeah, here you go. All these things. You know, when I I think that when I was diagnosed, I was in the hospital for an entire week. And day after day, there were new things brought in different pieces of education in a nature that I could swallow and my parents could swallow. Because it wasn't all rapid fire.
Scott Benner 24:24
Yeah. I have a note from a person that just I just randomly got this note a couple days ago and just says Hey, Scott, thanks for everything. You've helped me more in two days than anyone else helped me in the last 20 years. And what I responded back to her was I was like, well, that's really wonderful. Thank you. I appreciate that. I'm glad that the podcast is helping you. But I didn't have to tell you those things while you were sitting in the hospital. And it still felt like somebody hit you in the head with a frying pan. Yeah, I got to tell you when you were relaxed and at home and and I think in
Jennifer Smith, CDE 24:55
a different way though, like there's a slap in the face with something that You never expected again, a type one diagnosis or a type two diagnosis or you know, whatever. But then there's a slap in the face kind of with, well Darn, this information spin around. Why didn't I have access to it? Why did nobody told me about this? Nobody told me I could do this way, or use this product or whatever. So I think they're, they're similar but different enough that you've been already navigating through something. And now you're a little bit more irritated.
Unknown Speaker 25:32
What? Why didn't nobody tell me that?
Scott Benner 25:34
Hers has another layer. And that definitely is that, you know, if she would have found the podcast, you know, six weeks after she was diagnosed, she'd be like, Alright, cool. Six weeks, I didn't understand what I was in 20 years is hard. Because you start doing that reverse math, you're like, I've done damage to my body now that I can't get out of, and you're telling me this all existed? And just no one told me about it? Right. So it's a strange balance. How do I explain type one diabetes to a three year old? And I mean, I don't know. I don't think you can. What
Jennifer Smith, CDE 26:07
did you do with I mean, Arden was to right? Yeah, she was how did you guys talk to her about it?
Scott Benner 26:13
You look her in the face. And you say, I'm sorry, I have to give you this needle. And you try not to cry? Like, I mean, what else are you gonna do? Right? Like, it's, she's two or three years old in this in this person's situation? What are you going to say? Like, correct me? What are they going to understand?
Jennifer Smith, CDE 26:33
Hi. And that's where you have to look at is the understand level. Yeah.
Scott Benner 26:37
I mean, eventually, we told her, there's a thing inside of her body that makes the stuff inside of this needle. It's not making it anymore, and she needs it. And so we're gonna give it to her this way. And she then saw the needle, put a big smile on her face and ran away from us, just like, took off. She just told me. Two nights ago, we were sitting around online, googling what are people's biggest fears. And guessing people's top fears, like by state by country was actually kind of interesting. Yeah. And she said, Oh, this is one of mine. And so we're all like, trying to guess what it is. And she's like needles, she's like, I'm afraid of needles. She's like, I really don't like needles. And I'm gonna try to get on the podcast and to talk about it. But Arden's only ever given herself one shot. One. And it was you did
Jennifer Smith, CDE 27:30
it for such a long time,
Scott Benner 27:31
I switched to a pom pom, and we switched to a pump when she was four. And she gave herself one recently, because she's going to school and I was like, listen, you're going to hit a spot at some point, while you're at school where you're gonna have to clear something, you're gonna need an injection here, do this one. And I'll let her tell the story. But she, I think she took the better part of 90 minutes to put the to put the needle on her thigh. But she had to go into a private room by herself and like psych yourself up to do it. But if you take her she'd gets blood draws constantly sure hates them, but has to watch it happen.
Jennifer Smith, CDE 28:06
And somebody else is doing it though. Yes.
Scott Benner 28:09
But she stares at it. She oh my god and look away she goes, I need to see it happen. I'm like, All right. I don't even know how to explain that. That thing, right? So it's not just as simple as nobody wants to get stuck with a needle, because nobody wants to get stuck with a needle. But she really, she hates it. You know, but how do you explain to a three year old? I don't know. Like, I think the best thing I can say is that after a while, it just becomes commonplace. And a three year old doesn't remember, five months ago, the first day you were like your Give me your arm, you know? Right?
Jennifer Smith, CDE 28:46
Well, and as you teach kids, anything, I think, I think parents who are very verbal and explanation about we're going to do this, because of this, like, I'm gonna go outside and I'm gonna mow the lawn, because the lawn is long, and it needs to be caught. And, you know, we don't want
Unknown Speaker 29:07
bugs growing in our backyard, or whatever it is, I mean, at a level that a
Jennifer Smith, CDE 29:12
kid can understand. And then you continue to progress through. As kids grow, you keep explaining more and more. And oftentimes, they end up coming back to you with the endless flood of questions that over the age of like, four comes into the picture, right? And as they ask more, you get a little bit deeper in, I guess, explanation. You have to start at a really like, dumbed down level. Yeah.
Scott Benner 29:36
And you build on it. You really do because I mean, even even saying, There's something inside of your body that makes this stuff but it's not working anymore. I don't even know if there's context for that. Really. There's stuff inside my body. You don't I mean, like what like this is because for a young person, you're you you're this the village that you see out front you're not your intestines and You know,
Jennifer Smith, CDE 30:00
if the child is interested in books already, and you read often, there are a lot of really good kid based books that are all different levels of knowledge to be able to start with an explanation. And I guess I would probably start there. Yeah.
Scott Benner 30:18
And I think understanding that it's not like you're, you're not talking to a friend, you're not going to explain to them right now. And they're just gonna get it. It's going to be like a process. And, you know, you have to be patient with it. This person said, will my child live a normal life? I know the answer to that now, but I absolutely did not know then. So we covered that. This person said what you said earlier that the simplest advice is still incredibly difficult to comprehend in the early days. It would have been great if somebody would have explained a honeymoon to me. You know that there's one. How about this one? Will I ever sleep again, they just talked about checking every two hours with no end date, and did not discuss CGM with me at the time.
Jennifer Smith, CDE 31:04
That's where with today's technology a you as the parent or caregiver, you go back and you say, You do realize that not only have you loaded me with this thing, not you, you know, by decision, but you've given me this thing to now help me manage for my child, you're telling me you have to do this, I know that this technology is available, you will risk you will write a prescription for this, right? I mean, you will give this to me, there is no reason not to. If I have the ability to sleep, I can make better decisions with all the things you told me to keep track of in the day for my child,
Scott Benner 31:40
but you were thinking about what she said like you're gonna check every two hours. There we go overnight, though. Yeah. Well, what? You know, right. And then there's some doctors who used to say, Don't worry, like, it's very important to check during the day, but overnight, don't worry about it, as well. Because that's what I was told. I was like, how the hell is that reasonable? Like, they told you to not check overnight? Overnight was fine. But during the day, you need to check. And I was like, yeah, and then I stopped. And I didn't do that. And that's how I Well, first I listened to them. And then eventually, I was like, wait a minute, that doesn't make sense. And then, you know, that's how I learned that I was putting Arden to bed at like 180 blood sugar. She was waking up at 90, and I thought I was doing great. I checked overnight and saw she was like 58 At some points.
Jennifer Smith, CDE 32:27
Right? I mean, that's very similar to being like, your newborn baby needs to nurse every two to three hours or get a bottle every two to three hours. But at night, go ahead and sleep about it. They'll be fine until you wake up at nine o'clock the next morning.
Scott Benner 32:44
Exactly right. And it freaked me out. I when I figured it out. It would have been nice. This person says if a medical person would have just talked to me like a human being. And this next person says the favorite thing that an endocrinologist told me early on you see this, people say this all the time online. But there's two things you can no longer eat poison and poisoned cupcakes is what they think. Yeah. It made us realize we could do what we needed to do and succeed. The mental load of it all. For me. My My son was for a diagnosis. And I was able to work from home with him until we became more stable with our sugars. And that helped her with her the mental strain just taking another thing away in life and being able to focus more on that we got super lucky. I was a stay at home dad already
Jennifer Smith, CDE 33:33
already. Yeah. When I think about especially in this I have a number of single parents, you know, single really single like there is no other person father or mother caregiver involved. And or just the sharing families, right? Sometimes you're with mom, sometimes your dad, sometimes you're the grandma and grandpa or whatever it might be. And in a diagnosis setting where there really is only one caregiver. Now you have added when you talk about things changing, you've added another layer of change that they may already be pretty overwhelmed.
Scott Benner 34:13
Yeah. Yeah, no, no, it's not everybody is in my situation where I was like, Oh, well, I don't have a job. I have plenty of time to figure this out. Right. You know, I tell people all the time. They're they, they thank me for the podcast. I was like, thank my wife, like she made enough money when we were younger that I didn't have to work and that's part of my free time. It was around figuring out diabetes. I wouldn't call it free time like you think of but you know,
Jennifer Smith, CDE 34:37
right. Like you're baking cupcakes for the neighborhood.
Scott Benner 34:42
Oh, you know what I'll do with my free time. But I mean, I wasn't at work, where I had to disconnect myself for my family's problems so I could get a thing done so I can collect a paycheck. You know. This person said I needed somebody to tell me it wasn't my fault repeatedly. In the beginning I'm here, this is interesting. We just talked about needle fear. And so I kind of want to come back around to this for a second. This person saying needle fear was really tough for my kid. They figured it out. It's no big deal now, etc. There's this thing that I did that I believe is worked for us. And I think it's worth people paying attention to because in the beginning, you can do this thing. Where you're like, well, we'll use the numbing cream. We'll get a buzzy, we're gonna do this. We'll do that. We're gonna make it easier. Oh, it's time for your shot. Not yet. Okay, buddy. Let's wait like I am more of the School of like, draw the insulin, stick it in push the thing over with like, we're not going to like this one way or the other? Yeah, let me draw it out. Let's not draw it out. I just I learned that lesson very early on when I think my wife and I spent an hour and a half in the middle of the night trying to get my son to swallow a pill. You just like swallow the pill? Just take the please take the pill. I don't want to hold on. Wait a minute, wait a minute, wait a minute, you know, like it's the it was that I'm just aren't used to wait a minute. I was like, God, let's just do it fast and get it over with. Yep. And just get it done. I mean, you'll find what works for you. But I think dragging it out, just extends the panic because it goes away when it's over. It does. Yeah,
Jennifer Smith, CDE 36:22
really. It's even like an argument. You know, with a five year old, essentially, you're having an argument. And you can tell that you're continuing to get more irritated, because they're just not listening to you. It's better as the adult to literally just be like, I'm stepping away. I've told you what needs to be told to you. We're not doing it for this reason. And I'm gonna go over here. And you can just sit because there's, you know, so just deal with it. Now, get it over with and move on. You also have a lot more time in your day.
Scott Benner 36:54
This one person says I was 39 when I was diagnosed, and I kept thinking, What do I do wrong? And she said, or he said, Excuse me one or the other. I still, they said that their mental health is still not where it was before they were diagnosed. And they, they just don't know what to do about it. And speaking of not knowing what to do about it, this next person says, How do you deal with overwhelming emotions? I've never had them before. And now here they are, I don't know what to do. And I don't know where to get help and do the whole thing.
Jennifer Smith, CDE 37:28
Yeah. I mean, the the mental health piece of diabetes management, both for caregivers, as well as the person living with diabetes, thankfully, has gotten more attention, if you will, in the past couple of years. But I think it's still well at the bottom of pile in terms of discussion and asking, how are you doing with all of this? You know, what kinds of things are you doing? To to have joy and to still feel good and to do as much as you can back to the normal, whatever normal is, right? I mean, there are, there are quite a number of mindfulness and meditative types of things that you can kind of do to get back to letting your brain at least work through things in a way that doesn't make you continue to feel stressed all the time. But you have to look for the resources, right? Nobody hands something to you like that at diagnosis.
Scott Benner 38:34
Well, there's a question I asked a lot when I'm interviewing people, and they have really heavy stories, you know, people are like, five, six metal conditions, like a lot of stuff going on, whatever. And they get done. And I try to remember to say to them, Hey, are you okay? You know, like, because I also try to make my interviews fun, and like you're talking about these really serious things and to keep it light hearted. And then I'm like, are you alright? I'm frequently surprised by the number of people who don't know if they're okay or not, or not. They can't say they it's not that they don't want to tell you. They're not okay. It's that they don't even consider if they're okay. Like it's not a concern of theirs. They can I guess they compartmentalize everything to the degree where they don't ever consider Yeah, at all. Yeah, you know, I've had people I'm like, Just take your time. Think about it. Are you alright? They can't say, you know, and that's, that, to me seems like emotion. They're not okay. Yeah. And they're not dealt with emotions. They don't even know how to like, put words to them, you know, right. Right.
Jennifer Smith, CDE 39:41
And I think some of that might come from trying to bring down emotion around diabetes management make right to be able to just see the numbers as numbers and information and be able to navigate through them and move on right. But a lot of that is taking A piece out, that is part of being a human. And, yeah, it's okay. It can go too far in terms of I don't really even know how to analyze whether I feel good or not.
Scott Benner 40:12
Or I don't think I should think about this because I don't, I might fall apart if I think about it. Right. And so everybody's just trying to be I think you're right. Like, there's whatever your situation is. And I'm certainly not, I mean, some people situations are much more manageable than others. But that is your situation. It's not, it's not changing. So you have to accept it, and then put your head down and keep going. And I guess maybe for some people putting their head down and keep going is I can't think about this. Because, hey, because it's yeah, I'm 39 years old, and my pancreas stopped working. Are you okay? I think the answer is no, I'm not okay. This is terrible. You know, like, and there's no, the doctor said they can't fix it. And it's not going to go away. So how am I supposed to be okay. And the answer is, I think you have to change your perspective about what Okay, is. That makes sense? Yeah. I mean, because in the beginning of life, everything just feels free. You know, they mean, like, I'm going to do this and it's going to be fine. And if it doesn't, I'll go do something else. It doesn't matter to me, it doesn't really hit you the first time till school when you're if if the idea of getting good grades is important to you, because then suddenly you're like, Oh, I'm being measured. Right? Yeah. And then you become an adult, and you get measured again, because you want to stay safe and secure and fed. So you got to find a job. And then oh, everything's not so easy. But then you fall into that you're like, hey, all right. I'm an adult, I'm doing it. I got a place to live. Television works. You know what I mean? Like, my vitamins, I'm good. Here's the next problem. And it's medical. And then No, no, it's not okay. I didn't want this to happen to me. I mean, it's
Jennifer Smith, CDE 41:56
well, and medical, I think is really, it's one that may or may not have a quick solution to it, or a fix to it at all. It's something that you learn to navigate with. But it's not like, I'm not okay, because my tire went flat on my car. Okay, well, this is a situational not okay. This isn't a long term. I need to learn how to accept and move forward and realize that this will be here. I know that some days are going to be great. Like I want them and other days are going to be karate. Yeah. And, yeah,
Scott Benner 42:38
I think it's important to know that you are going to go through a lot of the stages of grief, which you know, you can look up online, there's different doctors who think of them differently, but you know, shock disbelief, denial, bargaining, guilt, anger, depression, acceptance, hope, like that stuff is, it's all going to hit you. And it should This one's interesting. Do you know why they call it diabetes? Do you have any idea I'm asking you if you know, like, where they
Jennifer Smith, CDE 43:01
come from the light, I mean, diabetes in and of itself. There are several, obviously, kinds of diabetes in terms of the end like the diabetes we have is diabetes mellitus or mellitus or, you know, whatever how you say that, that last term. In terms of just diabetes. It there are Latin terms, essentially, that go along with it, which is the reason
Scott Benner 43:26
this person statement makes me think that it's, we should call it live a VDS. Because she said her six year old said, why is it that I have babies, that's how the kid heard it. So she thought I'm gonna die, because I got diabetes. She's, she's six. And you know,
Jennifer Smith, CDE 43:46
it is kind of cruddy me. And actually, it's something my husband said to me a long time ago. And we're like doing the diabetes anniversary of their diversity or whatever he's like, why are we not calling this livability? Like, you don't die right away, like, in fact, you, you move forward? Along with it. You're living so what's the, you know, worse than I'm like, Well, here's the Latin meters. Yes, exactly. So
Scott Benner 44:12
it's, I guess, Isabel did a very good job grouping these questions together for me, because I just keep thinking, Wow, it's amazing. They all just relate to each other as I go down the list, but now I realize she did this for me. So that was nice, because this next one is not pleasant. But this list this person said, my baby was diagnosed, and everything felt like that to me. She's like, well, is sugar gonna kill her? Am I gonna kill her with insulin? Is this pump gonna kill her? Will this CGM kill her? She said death just rang through her head in the beginning. Yes, it's a it's a it's there's probably a good spot here for us to point out that Jenny's living very well. diabetes and so are a lot of other people.
Jennifer Smith, CDE 44:54
Many, many other people absolutely are.
Unknown Speaker 44:57
Yes,
Scott Benner 44:58
but I we're doing Next as part of this series, because these are very likely the things that are going to run through your head when this all happens, and I think that should you not go find a therapist, or should you not go find an online group, that it would be very helpful to know that there was another person who thought, I'm gonna kill everybody. I thought I was gonna call Arden constantly. In the beginning, everything I did, I was like, this is definitely gonna kill her. Like, just, you know,
Unknown Speaker 45:27
I'm gonna give this to her. And I don't know that it's right, and I'm gonna snack and well,
Scott Benner 45:33
lunch wasn't lunch anymore. Lunch was just like, I wonder if I didn't screw this up is how it felt. You know? And then, you know, a couple of hours later, she was still looking at me. I was like, hey,
Unknown Speaker 45:43
yay, was when I didn't. Yeah, it isn't. You know,
Jennifer Smith, CDE 45:48
I haven't thought about it in quite a while though. The question about the word. diabetes, I really haven't. I mean, the the first part of it has nothing to do with death at all Daya. diabetes really just means a passing through or a siphoning right. And mellitus or mellitus means sweet. So it's they tested eons ago, when we had nothing. Doctors would literally dip their fingers in like a person's urine and taste it. And if it was sweet, they knew that they had this like sugar sweats, sugar sickness, or honey sickness.
Scott Benner 46:24
You also knew your doctor really cared about you. Because taste in
Jennifer Smith, CDE 46:28
my urine. Urine is pretty sterile. So unless there's like Aki, you know, whatever,
Scott Benner 46:33
how about I don't care, Jimmy, I would not have been a good doctor. In that moment, I would have been like, listen, we could taste this to see if you have diabetes, but I gotta be honest, I'm not doing it. Go find a friend.
Unknown Speaker 46:45
There's lots of stuff that could be in. Good Doctor was like, let's taste this and see what's going on. He signed up for
Scott Benner 46:52
that. This person said to be very careful that they stopped taking care of themselves when they were diagnosed. She said I could start, I got to the point where I could count the times I was showering because I I was just not taking care of myself anymore. She's like, I was fighting with my insurance company, calling companies begging nurses to call me back. She said I was distraught and overwhelmed. And that's where the that's how the grief hit her. She kind of just started to let go of like everyday activities that you would do.
Jennifer Smith, CDE 47:25
Right better now. And I think it brings it in, I mean, that that brings in a layer in terms of what she mentioned, things like calling insurance and fighting for things, right? It brings in a piece to that management, that is the addition of more, right more things to keep track of and do. It's not well, my you know, medication that I take for whatever it is, I pick it up once a month, and it's okay. And I don't really have to think about it. And I want to fight the insurance to cover it and whatever. But all these parts that ended up coming along with diabetes management in today's world, especially mean, you may have to have more interaction, at times, not necessarily every day, but more interaction at times, and especially in the very beginning. When you are asking your insurance to now Hey, cover this and cover this. And we've got this new diagnosis, and they've got all of these protocols and things that they have to follow within their organization. There's a lot of work upfront,
Scott Benner 48:32
ya know, I've yelled the F word into a phone a lot of times the beginning Oh, yeah. I don't know that I've ever used no word. But I've heard Yeah, I used to find that it moves things along very nicely.
Unknown Speaker 48:46
I probably said them after I was off the
Scott Benner 48:49
- i I'm assuming that this customer service rep would say that they don't feel like they're in a safe space. Now I'd hang up the phone. But back then I was like, Hey, you don't know how hard this is? Let's go. You know, it's just interesting. Consequences are real. But I couldn't let that stop me from living my life, the balance. I think that not being a person with diabetes, I can't be sure. But I think that's got to be a bargain that everyone with diabetes makes every day of their life. Like Absolutely. Right.
Jennifer Smith, CDE 49:24
Absolutely. With with everything. I mean, the consequences. And they're not necessarily saying the consequences are real in terms of, let's say bad versus good. I don't love those words. But there can always be a good consequence to your choice. There could also be what you really didn't plan on happening, because it just worked out the other way. Right. So
Scott Benner 49:47
this person says, the fear of complications for my daughter was my biggest worry. And that's all I saw when I look things up online. I have to tell you, my brain works that way too. Like, you know, you have an autoimmune disease, there's a likelihood you might have another one at some point. At what point your brain
Jennifer Smith, CDE 50:08
goes to the world what else could be wrong? Yeah, the worst What else could happen because of this? Yeah.
Scott Benner 50:14
Which by the way, you have to guard against, because you, you have to make sure to look at all your possibilities as things are happening over your lifetime, but do not just see diabetes all the time, too. I see people that happens them all the time, like, hey, my kids got a headache. What's this got to do with diabetes? I was like, I mean, maybe, yeah, maybe the kids just got a headache. But listen, I don't know is your blood sugar bouncing around all over the place? They've been low for a while high for a while. If those things decide people get headaches, still people with diabetes, get headaches and have nothing to do with their headaches. And it's hard sometimes to separate them. You know,
Jennifer Smith, CDE 50:50
and then in kids in terms of headaches, I think a big one is hydration. A lot of the time, quite honestly. And yes, you might see some blood sugars that look funny to hydration being a big piece of overall management. But headaches just alone. Oftentimes, it's drink some water,
Scott Benner 51:07
I want to I want to offer some comfort to the person who wrote this, because they said that they remember thinking that their son would grow up to hate them. Because she saw what she was doing taking care of him as hurting him. I don't think that's how it gets remembered. You don't know? Yeah. I mean, I guess it could, but
Jennifer Smith, CDE 51:31
it could I think in again, that's where some of the discussion goes along with what you're doing, using less of your own, like inner thought as you work through doing an injection or changing a pump site or putting, you know, a new sensor on or all those kinds of things that parents are doing. If you talk through it, like and verbalize it rather than just think it through. Kids absorb. And they start to make connections. And with that, I would expect that the child who's hearing their parents say, we have to do this, and I'm going to do this, and this is why I'm doing it this way. They see it more from a standpoint of caring, rather than the parent. Like being me and yeah,
Scott Benner 52:17
no, I think that hopefully, over time, it shakes out that way. Yeah. This next one, I learned the most important thing I learned from the podcast is that non diabetic blood sugars are actually possible. And no one told me that at first and I did not believe it until I found the podcast. So I'm very glad that that happened for them. I guess they made it on to the Pro Tip series. But that's that's lovely that that for somebody because I do think that when expectations start getting set up and they start telling you like a seven a one C is fine. Don't worry about it, you might start thinking like, oh, I guess I guess what I used to have with my pancreas isn't gonna happen anymore. But it can. Just a quick one lady said, I was told that in the beginning, it will be hard. And I thought in my mind, that's probably means like, two, three weeks. And not a couple of years or do this for three weeks. I got that. It'll be okay. If it's only going to be three weeks. That'll be okay. Yeah, so there's one on here. There's not there's one that's not on here. And I know we're kind of getting up on your time. Am I right? We're okay. Because I'm gonna tell you right now, this list goes on. And on and on and on. Like, I think we've hit the big, the big, you know, ideas, ones, but here's one that just isn't here. And this is all this is perspective from me, because I'm not a I'm not a religious person. But I see people talking online all the time. Why did God do this to us? I see a lot, or this is going to be okay. Because God wouldn't give me something I can't handle. And so I don't have a lot of religious perspective. And I and I understand that. That's how some people might see these things, which is, you know, I have no qualms with, but what I can see from an outsider's perspective is that sometimes sometimes I've seen people not pay as close attention to their health, because they think God's got it. If that's the way to put it, I don't know exactly. And if you believe in God, and you think he's on your side, or she's on your side, or whatever you think I'm down with that. But just remember God is not going to Bolus when your kid is 330 You know, you need to take care of these things. There was just another story recently, I think it was from Australia where these people were put in jail because they let their kids die. Yeah, because they said that God was going to take care of him. And yeah, you know, I just, it's not a commentary about religion to me, it's just you have to realize you're in a, you know, a unique situation that is not going to be in any way taken care of without you facilitating it.
Jennifer Smith, CDE 55:20
Correct. And I think the bigger thing in, in whatever type of faith that you may have. Most, most religions, most faiths have an underlying to God or logos or whatever you believe in kind of out there. It gives us movement forward and information. And the better we utilize that information for the, for the greater good, or for our own health or whatever, we have to know that that knowledge, you know, is coming from somewhere, right. And so I don't think if there is a God, there would be, and I believe in God. But I don't I don't think that God dictates this person gets cancer, this person gets diabetes, this person gets heart disease, that that type of being if there is, isn't so cute into person to person on a grander scale, we've been given free choice, right? We've been given the ability to use our brain to use what we know how to do, or I don't believe that there would be doctors and engineers and plumbers, and, you know, people who are truck drivers or bus drivers or whatever, you know, we've decided along a path. And we are using our brains to make decisions. And one of those things comes in to health management. If you if you have a child or someone you love, you have to do what is been put out there already. To be two years. Right. I mean, that's that's what I believe. I think I in particular, from my faith base, I truly believe there was a reason that I have type one. I believe it's because I had a, I guess, a destiny, if you will, to be able to use what I've been given to help other people. That's what I believe. And I don't know. So I hope I'm Hope I'm achieving that.
Scott Benner 57:47
I appreciate your perspective very much, because I honestly don't have one. First of all, I just know that, from my, from my perspective, looking on to other people's lives. There are times that I want to respond and say, Please stop hoping and Bolus, right. Yeah, like, right, please. I hope. Can you pray for my son, not none of us need to pray right now push the button on the thing, make the blood sugar go down, like like, you know, like that, that kind of thing? Right? I just think sometimes that that can get in the way of you making a good decision. And so I'm going to there's a story, I'm going to get it wrong to some degree. I think it's it's something that's been repeated over and over again for years. But guys walking down the street falls in a hole. A doctor passes by the guy shouts up, hey, can I can I get some help here? The doctor writes prescription throws down in the hole. And the guy's like, well, what am I gonna do with this? And then, you know, a priest comes along, and he says, Hey, can I get some help? And the priest writes out a prayer and throws down the hole. And the guy's like, actually can't get out of this hole and a friend of his walks by, and he says, Hey, man, can I get some help? I'm stuck down in this hole. And the friend jumps in with him. And the guy goes, What are you doing? Like now? We're both stuck down here. And he goes, No, no, I've been down here before. And I know the way out. Let me help you. Right. Yeah. So you, you have to accept that help. Right, right. You can't just you can't then you can't just step back and keep saying like, what's the other story right guys lives on a floodplain. And somebody comes by and the news cameras come by and they say, Hey, aren't you gonna leave? Man, there's a flood, you gotta go. And the guy's like, no, he's like, you know, gotta get me. And the guys like, I really think you should go there saying you should leave here. And then a little while later, a guy comes by on a boat and says, Hey, man, get in. There's a flood common. Let me get you out of here. And a guy goes, no, no, no, no, you know, like, God's got right. And then eventually the guy's house gets knocked over. He's dead. He looks at God. When he opens his eyes. He goes, what happened, guys, like, like I said, the reporter with a whole bunch of hell, I sent the guy with the boat, you know, I mean, it's an old story, obviously. But you really have to. These are just parables because this is how people's minds work. Correct? Right. So take the help that's offered to you and wouldn't help go to somebody who knows what they're doing. Yeah, excuse me find people who have been through this before. Err how you feel, don't hold your emotions in. Understand you didn't do this guilt is I understand it. But I mean, try to have some long perspective, I find that what helps my guilt more than anything is sometimes when I'm talking to a person who's got autoimmune down their family line forever. The other day, this woman said to me, Oh, my grandmother has she's achy all the time. I don't know if she has Ra. She's like, I'm not sure. But her grandmother was in her 90s. And I thought, okay, that sucks. But she still lived her whole life. You know what I mean? Like she like a long, long life. I think sometimes just seeing that other people do, it takes away a lot of the other stuff. And I also think, Jenny, that understand understanding, I don't think anybody gets out of this thing unscathed. Like, you know, I'm a little, maybe we all are a little jaded, because we know so many people with autoimmune diseases that it feels like everyone has an autoimmune disease some days, right. And I'm sure there are some people walking around who are just free and clear. Nothing's ever happened to them. But I think for the most part, that's not most people. So I don't
Jennifer Smith, CDE 1:01:19
think so either. I think most people have something that is not visible to others, similar enough to diabetes. And the only outward visual in terms of diabetes truly are the devices right? Now, the pumps and the CGM that are very visible to but even that doesn't disclose internally what the person has to go through and manage and take consideration of all day long. So yes, and I loved your little boat, and, you know, the news reporter and being like, hello, hello, something's come in, right? Because that is it. Oftentimes, we, if you really are hoping too much hope is a grand thing. It's wonderful. I, you know, we all have to hope for things. But along the way, we have to take action, in order to get to that point of what we hoped for. You can't just sit back in the launch your chair and be like, well, if it comes to me great, and I really hope that it does. That's
Scott Benner 1:02:31
not really gonna work towards it also work. If you've heard people on this podcast before we have multiple issues. And I'll say to them, If I gave you a magic wand and could make one of these go away, which one would it be? They almost never say diabetes. It's fascinating. Like, I always think like, Hola, definitely gonna say diabetes, and always like, Oh, no, I would rather not have to deal with this or, and I think my point is that even if you have one thing going on in your life, and the guy across the street has one thing, and you think, Oh, his thinks easier than my thing. If you had his thing in five minutes, you'd be like, dammit, my thing, I'll get my thing back, or how do I get rid of this now? Like nothing? I don't know. You know, this sucks. Don't get me wrong. And diabetes is relentless. And it's 24 hours and etc. But there's a way to, there is a way to get through it and not right not have to live with all these feelings. And I think in the beginning, it's hard to imagine that's true. But it really is.
Jennifer Smith, CDE 1:03:24
And I think something around it, too, is actually opening up to the feelings in the beginning and letting yourself feel all those things. You know, the stages of grief, really let yourself work through that. Don't turn it off. Let yourself work through. I feel really horrible. Could I have done something about it? No, I couldn't have changed this. Okay, let's move on. Right? There's there's only so much that you can or you're going to just feel bad forever. I don't want that for anybody was the person
Scott Benner 1:03:58
here that I didn't get through that said every hospital should have a crying room. It's the soundproof room that you can go into the chair in a box of tissues that you just sit there and
Jennifer Smith, CDE 1:04:08
let it out. And garage is a really nice place for
Scott Benner 1:04:12
me. It's like ice cream in the garage in case you're one. Well, thank you very much for doing this course.
Jennifer Smith, CDE 1:04:20
Absolutely. Good. Very good topic. I'll talk to you soon.
Scott Benner 1:04:33
First, I'd like to thank Jenny Smith for coming on the show today and continuing to pour her great knowledge into this podcast. Don't forget you can find Jenny at integrated diabetes.com. And if this is the first bold beginnings episode, you've heard there's a whole series of it, you should go back and find them. Thanks so much to Ian pen from Medtronic. diabetes please go to in pen today.com To get started. And of course the Omni pod five is available at On the pod.com forward slash juice box
I don't want to lie to you. I'm tired. This is my last editing job of the day this episode and so for that reason, I'm not going to say anything else. Just thanks so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. I gotta go to bed
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#757 Arden Is Back
Arden is back in an episode recorded the evening before she left for college.
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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 757 of the Juicebox Podcast.
On today's episode of the podcast Arden has returned. My daughter Arden was first on the podcast in August of 2021. Wow. Over a year ago, sorry. I know I said I've got her back on. I didn't know it was gonna take a year. Anyway, she was first on episode 517. I think it's called Meet Arden. And today she came on. Well, you'll see in a second but much like all of the episodes, I had no idea where this was going to go. I just want my intention was to have Arden on and we were going to talk right before she left for college about some things that I wanted to reinforce with her but you know, it didn't go that way. Anyway, 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 health care plan, or becoming bold with insulin. If you have type one diabetes, or you're the caregiver of someone with type one diabetes, please go to T one D exchange.org. Forward slash juicebox. Join the registry. complete the survey when you complete the survey. You're helping people with type one, you're helping yourself and you're helping the Juicebox Podcast T one D exchange.org forward slash Juicebox Podcast this show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitoring system, you may be eligible for a free 10 day trial of the Dexcom G six go find out@dexcom.com forward slash juice box. Okay
Unknown Speaker 2:09
Wait no. Why are you moving away from me? Because I don't want our microphones to pick each other up.
Arden Benner 2:14
Oh my god. I'm gonna go wherever you get the nice chair. My office. It's my last day here. You don't know what can happen to me.
Scott Benner 2:27
Is that how you want to start this? Okay, so I will let you fix your wedgie. Okay, got it. Terrific. It's been a while since you've been on the podcast. People ask for you to come back all the time. I try not to bug you about it. All you do. I do bug you a little bit. Talk right into that thing.
Arden Benner 2:55
Next to me. Talking to
Scott Benner 2:59
me my drink please know this one. That's fine. Do you want this one for now? Yeah.
Arden Benner 3:06
Thank you just said.
Scott Benner 3:11
So it's late at night. And we're getting ready to go to sleep and sleep for a few hours and Levin 17 to be exact. And then we're going to take you to school in the morning. long drive. about 15 hours taken to cars. packed full of stuff. Yes. You think you're ready to go?
Arden Benner 3:29
I'm good.
Scott Benner 3:31
You're definitely ready to go. Do you feel nervous? No. Okay. So I've been wanting to do this with you. So that we don't have to do it for real. You don't even
Arden Benner 3:44
know. This feels for real to me, are sitting right in front of me.
Scott Benner 3:49
I mean, like, you know, I'm recording it, which is odd. But I don't want to I don't know. I've tried my best over the years, right to pass off your stuff to you very slowly. And for years people have said, either that's a great idea, or that's not going to work one or the other. So I guess I want to ask you how ready Do you feel to take care of your diabetes stuff? By yourself? No, I
Arden Benner 4:16
can 8.6 out of 10 That's not bad. I mean, I had a seizure so well, that brings down my skin. Just like my point.
Scott Benner 4:29
What was the short one? Are you gonna tell people about that? Oh, yes, either. Yeah. Okay. Well, we'll talk about No, I feel like all right. What do you feel like?
Arden Benner 4:39
I don't have to cut this out. Why? I was gonna say I feel like some of these people might take it more seriously than I do. Well,
Scott Benner 4:47
do you think you don't take it seriously? No, I
Arden Benner 4:49
take it seriously to the amount of serious that needs to be taken. Okay. Yeah. So I don't think that anybody's gonna be put off. Oh, that's what a lot of people when they're like, they're just so serious. And I'm like They make a joke out of it. Well,
Scott Benner 5:02
I don't know what to say. So we'll talk about that in a little bit. Alright, so first things first, you are going to go to a hotter climate. And you're going to be moving around more more than usual, right? You're going to be taking buses instead of driving places. And we expect there's going to be some adjustments that need to be made. So are you worried about that?
Arden Benner 5:28
No, I'm not worried at all.
Scott Benner 5:31
If I said if I dropped it right now, just I went right over. Heart attack, probably. Okay. Okay. And that happens to be a stroke, or a stroke. And you
Arden Benner 5:40
maybe like an embolism? Is that how you say it?
Scott Benner 5:44
I think it is. Yeah. Are you showing off your your Grey's Anatomy,
Unknown Speaker 5:47
a lot of Grey's Anatomy. Sure. And so it has to restart because Derek's gonna die soon.
Scott Benner 5:55
It if you were completely on your own, and you got to school, and found that you were having pretty consistent low blood sugars. Would you know what to look at?
Arden Benner 6:06
Yeah. It wasn't really late.
Scott Benner 6:09
It is late here. But on your settings, would you know what to do?
Arden Benner 6:14
The I'm sorry. I would, I would see the word now. Click it. Yeah.
Scott Benner 6:20
Yeah. What would
Unknown Speaker 6:24
you want to look
Arden Benner 6:26
like the insulin to carb? Not that it's the, um, I know, you could like take basil away and all that, right. But that's not even what you're talking about. Hold on. Let me grab my cellular.
Scott Benner 6:36
Okay. So you think one of the ideas might be to lower your Basal make your basil weaker? Yeah. And the other thing
Arden Benner 6:47
is the is it the last stuff on here? But is it the insulin sensitivity? Right? Yeah.
Scott Benner 6:56
Right. And then of course, the insulin sensitivity? If it was, let's just make up a number, say it was 50. Right. And we went through this right? And you were getting low. One of
Arden Benner 7:05
them's like, you make it low, you're gonna get Ha, no, I'll text you.
Scott Benner 7:10
But would you make it first time? But would you make it 51? Or 49? If you if you are getting low
Arden Benner 7:17
49? was a wild guess? I don't know. I'll text you. Okay, the first time, another very long post it note. And then we'll be fine. So
Scott Benner 7:28
your insulin sensitivity, right? I knew that word is one unit moves you 50 points if the number is 50.
Unknown Speaker 7:39
Okay, so we
Scott Benner 7:41
would want it to move you not as far if we wanted it to be weaker.
Arden Benner 7:48
It makes sense why I said 49.
Scott Benner 7:50
Now the lower you make the number, the more aggressive it's going to be. The higher you make the number, the less aggressive it's going to be.
Arden Benner 7:59
When you speak to me the words go in one ear and out the other. I don't know how these people you just said something and my brain went. Okay.
Scott Benner 8:10
So we took screenshots of all your settings. And we'll send them to me. And then over the next couple of days as you settle into your, you know, routine, we'll make adjustments where we need to make adjustments. What's the thing you think you'll struggle with the most?
Arden Benner 8:27
Talked about life or diabetes, diabetes? Oh, okay. Well, um, because I was gonna say choosing an outfit to wear. But that's not the answer. For I don't know, probably just at night, over I'm not like, anything that happens to me during the day I'm not scared about because I know, I can just fix it. But at night, that's the only thing just because you know, I won't be awake. So you know, yeah, you could in your sleep.
Scott Benner 8:53
You could it in your sleep. That's 100% True. Yeah. So we have roommates that you'll have a roommate, and you'll have three. Okay, so somebody in your room and then two more people in your suite. Yeah. And we're gonna teach them like, Have you thought about this? Like what you want to say to them? No, they all know, right?
Arden Benner 9:13
Yeah. Okay. No, I gotta tell you that. Did you gonna be a surprise?
Scott Benner 9:17
No, I know you told them but did you tell them there's going to be stuff we were going to want to explain said
Arden Benner 9:21
that. My dad wants to sit down and talk to you guys. And they said, Okay, sounds good. All right. Well, I don't know what they sound like. So I just did that.
Scott Benner 9:28
So we're going to we're going to talk with them. We'll show them how to use the the G vo Capo pen case you need that right on. There's gotta be no one line. So willing. Yeah. Okay. So Alright, so let's talk more about like day to day stuff.
Unknown Speaker 9:48
Okay, okay.
Scott Benner 9:49
So you're gonna get up in the morning. Do you think you're going to eat right away? Yeah. What do you think you'll get up and eat before you go to class?
Arden Benner 9:57
I guess it depends what class I have. I have classes at different times every day,
Scott Benner 10:02
right? So your fasting blood sugars are really good.
Arden Benner 10:05
Oh, thank you. Yeah, that's quite a compliment. It is quite the
Scott Benner 10:09
opposite meaning you can get up in the morning and accomplish a lot without your blood sugar rising or falling. Have you noticed that? Yeah. Like you can also sleep in in the morning without getting too low stuff like that. Correct? Right. A lot of people can't do that.
Unknown Speaker 10:23
Oh, so
Arden Benner 10:25
that must. Probably does. Sorry, guys.
Scott Benner 10:29
So so if you got up early for an 8am and went from an eight to 10, I could see you being able to pull that off without eating. Yeah, I have that twice a week. Okay. And then you have other days where you have an 11am Do you think?
Arden Benner 10:46
On real,
Scott Benner 10:47
just that gummy bears, right.
Arden Benner 10:48
Yeah, it's still I'm fine. Whatever, we'll be fine.
Unknown Speaker 10:50
What's your butcher? Just,
Scott Benner 10:53
it's at why is it beeping at 80?
Arden Benner 10:57
You're asking me a lot of questions. I don't have the answer to
Scott Benner 11:00
I did lowered a little bit because you're going away. But I thought I lowered it to 75. That's coming back up. I can see. So you know, everyone can calm down. I don't think anybody was not calm. It feels like you weren't. So you could probably get up in the morning and eat before the 11am if you want it to if I'm awake. You're also not a young person, a breakfast person. Really?
Arden Benner 11:17
I don't like to eat like before, like 1030 in the morning, right? I feel sick. So that's
Scott Benner 11:28
here to tell people why you just acted like that a monitor started the dam. And I think she thinks that's the one that's recording the show. But that's one we
Arden Benner 11:34
can't we already nine minutes into this. We cannot start again.
Scott Benner 11:39
It's fine. We're not gonna have to start again.
Arden Benner 11:40
Oh, you can edit? Yeah, why would we add it? I'm saying you could edit it if we if it is
Scott Benner 11:47
if it got messed up where we good. Okay, so I see that. So you're so what are our real concerns? The heat is going to be different. So like your real concern, diabetes concerns. They still feel like you're a conceit. Walking. Right? Yes. Okay. I agree. How are you going to prepare for that?
Arden Benner 12:13
I'll bring a fan. I'm just kidding. Um, what do you um, you know, I'll figure out how it goes. And then I'll fix it after that. I don't know how else you would prepare for that. There's no preparation yet.
Scott Benner 12:24
So you don't see anything different than normal? You're going to walk with some sort of food some sort of fast that things do that. Yeah. You'll have juice with you and food. Yes. And that's pretty much it. Yes. Now. You've been taking care of your blood sugar. Pretty much by yourself for like, last year, I'd say Right. Very well. Yeah. Been doing a great job. You really have got one snafu. Almost no biggie wasn't almost that. I mean, okay. Was it was bad, right? Do you can you tell tell me what you remember the evening and I'll fill in the details.
When you have diabetes and use insulin, low blood sugar can happen when you don't expect it. G voc hypo penne 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.
In just a few minutes, you're going to hear art and I talk about a low blood glucose incident that she had very recently. And I'm just going to tell you that when you hear the story, you're going to recognize very quickly how bad it could have been, and how lucky we were about how when and you're gonna realize how much the Dexcom G six had to do with stopping a bad situation from becoming a disaster. If you're using insulin, I can't recommend enough the Dexcom G six, head over to dexcom.com forward slash juicebox. To find out more about the glucose monitoring system that my daughter has been wearing for years. And the one that helped us in the story you're about to hear dexcom.com forward slash juice box you may be eligible for a free 10 day trial of the Dexcom G six. Honestly I don't feel like I have to say this but with the Dexcom G six up to 10 people can follow you or your loved ones blood sugars in real time on their phone. Right now. My daughter has been at college for a week. Let me just pick up my phone, open it up. And I can see that Arden's blood sugar is currently 95. And very stable. You can do that as well. With the Dexcom, G six, up to 10 people can follow like a school nurse, your dad, a loved one, your wife, anyone that you want. Dexcom shows you the speed and direction of your blood sugar. And it allows you to set up alerts and alarms at the thresholds that you want. I sincerely hope you check it out. In the story you're about to hear Arden was wearing the do it yourself loop algorithm. But it wasn't enough to overcome the variables that led to the story you're about to hear. And to be completely Blunt, The Dexcom G six and those alerts and alarms saved her ass. I really hope you check it out. And while you're at it, please make sure you're carrying glucagon. Alright, ready? Everybody get ready. It's a scary story. But it all ends well, obviously. So don't worry. Let's get back to Arden.
Arden Benner 16:19
Do I tell the story? Yeah. Okay, wait, well, I'm not understanding. So I'm, at the end of May. I had my prom my senior prom. I looked great. Beside the point you did. Fantastic. So once a prom and then as I went to prom, my parents went to my brother's college graduation. So they were not home that night. So knowing that this was going to happen, my mom made sure that three of my friends leftover that night in case you know, anything happened and just because my prom, it goes in the order of red carpet at the high school, then you go to the actual prom, and then you go to like an amusement sort of park until around four o'clock in the morning. You don't really get 430 in the morning, if you don't really get back to the school to like 530 in the morning. And then you don't get home till like six. Yeah. So we were basically gone. I was basically moving from like, 10am that day till 6am Like, almost 24 hours straight. So I go to the prom, and I come home at like six in the morning, me and my friends. And I'll take all our makeup off. We get pajamas, and we get down to go to bed. And I remember waking up once to drink a juice because my blood sugar was low. And I was like okay, whatever we called you about that. You called me but I was already on top of that. Okay, it caught me. I was like, okay, whatever. I mean, just go back to sleep. My blood sugar was not like, particularly low either. Yeah, your blood sugar was really good the whole day. Yeah, it was really good. And then it wasn't like it was like in like, high 70s Like going down. I think when you called me and I drank a juice. Like I didn't feel dizzy at all. I was like, I drink a whole juice. So it's usually like shoots me up pretty quick. I was like, I'll be fine. Let me just go back to sleep. If anything happens, I'll take care of it. So I got to sleep. And there we are. I didn't wake up again. Because I was seizing. So my dad called me. And I picked up the phone. I mean, let me just tell you, I don't remember ever picking up the phone ever. Like I have no recollection of doing this. But for some reason, my body gave me the ability to pick up the phone. And he talked to me and I don't this is where you have to come in because I don't know what you said to me.
Scott Benner 18:36
So the real like, the one thing that I did, so I stayed up till like two in the morning that night watching you. And you were super stable. And I thought wow, this is going really really well. And Kelly woke me up the first time. Like I guess it was around 630 or so
Arden Benner 18:54
which was around the time I was like taking the first Yeah. And I was like I had I had just fallen asleep. I was barely asleep.
Scott Benner 19:01
So you guys had just gone to sleep. Kelly woke me up and said, hey, you know, Arden's Hello, and I called you and we spoke and you drank the juice, and I looked at your graph. And everything about your graph said that this juice was going to do what it needed to do. And and so people should understand probably the for just because of bad timing. Arden's like she said her prom was the same day as our son's college graduation. So he actually graduated Sunday. Her problem was on Saturday or is it Friday, Saturday?
Arden Benner 19:36
I don't know whatever. The whole point is. I went I was after my red carpet. You guys left
Scott Benner 19:40
we had to leave here. We did the red carpet. Then Kelly and I just boom, we went home, took a shower. We drove off. Spent the night we saw Colin a party went to bed and I stayed up watching your blood sugar like the whole time. absolutely terrific. The one thing I didn't realize is that at like three o'clock in the morning, you ate french toast sticks.
Arden Benner 19:58
So yeah, So the the event the amusement thing we were at, they did this thing so that like every hour, they'd put out a new food and then it hit like three o'clock in the morning. And that was our breakfast, I guess. And I hadn't eaten since I was at the prom at like, nine like 8pm. And I was like, I'm kind of hungry. Like, we're up. Like, I feel like I should do this to stay awake. So I got like a cup. I got literally like three french toast sticks, and like a little bit of syrup. That was like, it wasn't it was barely anything. And I, I also gave myself like no insulin at all. Really? I was like, because I don't you know, I don't want to get love or wha. And which was weird because this happened. Three hours after I ate those.
Scott Benner 20:43
Yeah, that Bolus for those french toast sticks was probably not necessary at
Arden Benner 20:48
all. Which, yeah, but how am I supposed to know that? You
Scott Benner 20:51
know what I mean? I think, listen, I don't think he did anything wrong. I think you told me afterwards, and we'll get to it, that you think that there were just so many different variables that day that we're not. Alright, so. So anyway, so I call RT and she drinks the juice. And then I have to get up and take a shower to go to Cole's graduation. So I'm, you know, go into the bathroom, I do what you do in the bathroom. And then I'm getting ready to get in the shower. Well, I have to say there was a passage of time, a little bit of time, not a lot, right. And I'm standing in front of the mirror. This is embarrassing in the I'm standing in front of the mirror in the hotel, and completely naked, like I'm getting ready to step into the shower. And I think, let me just look at Arden's blood sugar one more time. And I flipped my phone open, and it said low. And the arrow was like diagonal down. So this is when you call me. So I call you again. I pick up the phone, and you're like, hello, and I go art and you're really low drink another juice. And you know what you said?
Arden Benner 21:50
No.
Scott Benner 21:51
Oh my god. Sorry. You said what? And I go drink the juice, there's a juice next you drink it, you're really low. And you go, what? And you have to drink a juice? And then you said I can't. And then you've kept saying that you couldn't you're like I said I didn't drink the juice. I can't. And then I started getting panicky. And I recognized this far away Enos in your voice as you being too low. And so I was like, alright, and drink the juice, drink the juice. And you're like, I can't, I can't. And then
Arden Benner 22:24
and then I said, I'm jumping.
Scott Benner 22:27
Yes. You started saying I'm jumping? Yeah. And I was like, oh, god, she's gonna have a seizure. So I knew you were in the living room, and that your friends were in there as well. So I said, I said, wake up the girls. And you just said I can't. And I was like, just the other names. And I was trying to get you to think I was like, Tell me who's there? Who's there. And I thought if you thought of the name, and you're like, I can't, I'm jumping. I'm jumping. So you were like, going like in and out of consciousness.
Arden Benner 22:56
So first, we should say that his his problem solving skills come in handy. And he screams through the phone. Like the phone is not on speaker. He just screams so loud, that my phone isn't even turned up all the way. And a girl heard it in her sleep. Yeah, and jumped up. So I guess this will take over again. Yeah. So my friend, her name is Nadia, she jumps up. And so the rest of the story is not really from my perspective, it's from what I've been told. So, you know, what, me is a big lie. They lied to me.
Scott Benner 23:32
I can tell you what happened. Well, I got.
Arden Benner 23:34
So, um, I mean, you can jump in. But so what I know is that Nadia came over. And at this point, from my point of view from what I remember is I don't like not remember the situation at all. I just like remember bits and pieces of it. So from my point of view, when they were all my friends had jumped up and they were running around to get stuff. It seemed like like when you watch a movie, and someone's like was was in a surgery, and they wake up and like they're opening their eyes and they show that point of view and everything's flashing it felt like that. So when my eyes were open, my friend would be in the corner of our living room. And then when I blinked she was in front of my face. It was like it was like she moved like the speed of light. And she was like right in front of me. So that was like, odd. And I know I was moving a lot like I know I was jumping like a seat. I mean, the rear will be seizing right I know that was happening to me. But um my friends explained to me that there if they think that I must have like subconsciously heard you say you're having a seizure, and that must have like, stared at me, because I was hyperventilating. And I'm sure like a lot of people probably do that. But they Nadia said that she looked at me in the eyes and it didn't look like oh, she's like just having a seizure it like it almost it was almost like I looked at her like, you need to save my life like I know something's happening. And like I'm having a panic attack about it. Right. So I think we think that's what happened. We think all the hyperventilating was purely just like anxiety. So that's what's happening to me. And with all the jumping around, like, at the end of this, I ended up with like, a rug burn all over me and like scratches all over my wrist. So my friend audit comes over, and one of them, I think, Olivia, my friend, Olivia was there too, once she gave me my first juice box. So I'm told, and she gave me the first juice. And then I remember you saying to test my blood sugar that you needed to have my blood sugar that's important, while Olivia is doing this test my pleasure. And Nadia searching around on this table next to me, and she goes like, it's not here. None of her stuff is here. And I was like, because in the back of your head, it's like, like all my mobility. Like all that's kind of gone. Like I can't move I can't see correctly. Like everything's going in and out my ears and I can't speak but I'm listening to what you guys are saying like, in and out and I was thinking it's prom, I moved all of my equipment into my prom clutch, which they would not have thought to look into. So I was like, oh my god, like how because I was not in a situation where I could be like, Oh, hey, Nadia, why don't you go my prom clutch and we'll test my blood sugar. So I it took everything in me like everything in me. But I worked up the ability to move my left hand. And it was like I fidgeted at the prom clutch. And I kept doing it. And I was just hitting it and hitting it and hitting it, like barely touching it. And she looked at me and I was like, I gave her like this wide look with my eyes. And I'm hitting it and she's like, oh, so she goes, she gets the prom clutch. By the way, the hardest bag to open in my entire life. It's literally like a Rubik's Cube, she finally gets to open. My friends have seen me test my blood sugar before so they do that for me and everything Nadia test. And then while this is happening, you know Olivia is giving me another juice, like all that's going on. And I remember when it was happening, you had told Nadia to go get to get something. I don't know what you told her to get. Because I know that her body was moving to get something right. And I remember her hand like touching mine because I was hitting myself. So she stopped me from hitting myself. I squeezed her because I was like you can't move because it's messing with my head. Because every time you move, it's like freaking me out because you're like jumping around. You're trying to hold her. So I was trying to make sure like someone was next to me the whole time. Right? So I held her there to make sure that she was with me the whole time. Olivia was feeding me juice boxes, which by the way, I could not like I know, Nadia was near me. I have no recollection of Olivia being anywhere near me at all during this whole process. But she was giving me juice boxes. And then my friend sonje was there. She got the bread later. But she she didn't do much. Yeah. Um, so. So this whole thing happened. And I remember like, you know, calming down and everything. And you were still on the phone with us. We tested my blood sugar and a couple more times. But I would say that this lasted like the whole jumping and everything. This lasted like a good half hour. Like it did.
Scott Benner 28:21
Is that how you feels to you? Well,
Arden Benner 28:23
they talk to me too. And they said, because even after, like, I wasn't like, like seizing foresight. I was still like a like, like that sort of thing. You just like weren't there to hear me like you were talking to her, not to me. And every time you asked me something, I was kinda like, Yeah, I'm fine. Like, it was like that, but I was still moving around. So then I would say like, it took like an hour for me to just be like, Oh, okay, like that's over. But it did take a couple of days to feel like, like normal again. Right? But so this whole thing happened. Um, you want to call it graduation that day, right? Really fun day
Scott Benner 29:04
for all of us. Do you want to hear about it from my perspective on the other side of the phone? Yeah. And then I'll tell you what happened after okay. So I screamed in the phone when I realized I wasn't going to be able to help herself or get the girls. I just started screaming. And Nadia said, I'm here. What do I do? And I said, get her to drink a juice. And I said the juice is right there. It's right next to her get her to drink the juice. And she's like, okay, okay. And then another voice came in. And I sent somebody to get the glucagon.
Arden Benner 29:34
Oh, I think Nadia was that's what she was going to get up to get. Yeah. And I grabbed her.
Scott Benner 29:39
Hey, you kept her there. Yeah, because I was like, somebody has to go get the glucagon because if this juice does not work, we have to give her the glucagon. Which by
Arden Benner 29:45
the way, at the end of all this when they got home and I explained the story, they said, Oh, we probably should have gave you the glucagon because the juice was coming out of my mouth. Yeah, so
Scott Benner 29:55
what I didn't know because I was on the other end of the phone just giving directions and not there. To see what was happening is that Arden really wasn't drinking the juice as much as they were squirting it in her mouth. And I guess you absorbed enough of it to kind of bring you back because this whole thing the from art and drink the juice, I can't to Nadia saying I'm here to you not seizing anymore. It probably only took like three minutes. It happened that part of it was really quick.
Arden Benner 30:23
Did not That's not fun quick. I would not. But I think like before I started to speak in sentences again. That was only about a half.
Scott Benner 30:31
Yeah, so no, for sure. So we got your so they gave you juice that I said for you to get. I said Whoever eats something solid like bread, you know, so that your your, your stomach could like not just be full of juice and to hold you up because I wasn't sure what the excuse me. I wasn't sure what the insulin was going to do. So because I had no, because at that moment, still, I didn't know you had insulin. Like this was really crazy that this happened to me because I didn't realize that you'd Bolus anything before that. And I didn't think you would had insulin for like five or six hours.
Arden Benner 31:01
To be fair, it was about like three, almost four hours, which is pretty something like that. That's kind of insane. So
Scott Benner 31:08
well, the peak of the insulin can be three. I mean,
Arden Benner 31:12
it was like it was also those like really crappy, like french toast sticks from like that you haven't that like hit you really hard. Right? So I don't know. It's just odd, right?
Scott Benner 31:22
So there was probably the loot probably gave you Bolus is in there too. Maybe if you tried if it tried, but you didn't get that high afterwards, because I look back later. And you'll never that high after after the, like maybe 130 or 140 After the french toast sticks.
Arden Benner 31:36
I don't know my brain was kind of shut off. Yeah. And so the whole thing was
Scott Benner 31:39
crazy. Because like I said, a 2am When I went to sleep, I was like, I can't believe how well this one today. And it was. So it was, first of all, it was incredibly frightening, because I'm standing there in front of the mirror naked, naked, by the way. And I'm thinking, Okay, I'm three hours away by car. And this is Cole's graduation. And I can't leave here. And I was thinking, I cannot let Arden have a seizure that like couldn't you? No, no, but this is what was going through my head, like Don't let this happen was what was going through my head like, think of something. So all of the skills that I have from talking on this podcast came in really handy because I was able to walk the girls through everything I was able to kind of hear what was happening to you. I could ask them questions about how you were to try to, you know, figure it out. And in no time really. I mean, from the time I picked up the phone and called you until your blood sugar was 60 Again, was less than 10 minutes. Yeah. And so now this is the craziest part. From my perspective. You were okay. I had to get in the shower, or we were going to be late for Kohl's graduation. So I'm like, okay, so I walked. Well, first I looked in the mirror after I knew it was okay. And I thought I have got to lose weight. And I walked into the room. I woke Kelly up I was like Kelly wake up. And she's like, what I'm like, I have to get in the shower. Arden just had a seizure. I stopped it. She's okay. But you need to wake up and start paying attention to her blood sugar because I have to jump in the shower. So mom got up and did that last night. What the hell was I gonna say I was out of my I was so upset. Like, I was incredibly upset when it worked out. I couldn't believe that we stopped it. But it was just I don't know. I want to say it was lucky. But it was crazy. Your blood sugar.
Arden Benner 33:28
The fact that I picked up the phone was lucky, right? The fact that you even looked before you got in the shower was lucky. And the fact that Nadia heard you was like, yeah, it was all right. If they weren't there, I'd be dead.
Scott Benner 33:40
And if I didn't call, then it would have been up to them waking up to this and figuring out what to do. And then you might
Arden Benner 33:46
find out where they're just not
Scott Benner 33:50
as great as they were. And this was really interesting for people three girls that Arden's known forever, like these girls grew up in my house as much as they did in their own house. One of them kind of froze and didn't do anything. Yeah, and one of them was helpful, but not a leader in this situation. Yeah, Nadia took over and like she took care of it. Yeah. And she like, it was amazing. Like so even those Mixa girls you know because people say all the time like oh, I explained it to my neighbor or don't worry they understand but you don't know how people are going to react and
Arden Benner 34:23
through those people probably would have been like, um, if Nadia hadn't said like go do this and go to she
Scott Benner 34:29
got very like she helped direct everybody Yeah.
Arden Benner 34:33
Also you said this previously so you guys obviously like don't know my friends so I'm not gonna like tell you about their lives but out of all of my friends Nadia has probably had like, one of the tougher lives Yeah, so she's been through more traumatic events, which leads to a more like How about everyone just like shut up and let's say
Scott Benner 34:52
yeah, she's dumb. Yeah, she's naughty a seen some shit like this isn't the worst thing that's ever happened to her? I don't think so. She was just like, do this Do this. And I have to say they were amazing. And you know, I would, you know, obviously very grateful but you're not wrong if I don't look at the thing like that was it like I somehow called you 45 seconds before you were gonna have a seizure? Yeah, that was it. And I somehow picked up that phone. Yeah. And you picked up the phone, and then the yelling. I mean, to
Arden Benner 35:21
be fair, like, I wasn't even I don't remember looking at my phone. Like, imagine if I had declined you by accident, right? Like, just all that stuff I
Scott Benner 35:29
would have kept calling back happened. I also would have called the girls after that. Yeah, but it's just that time was important. Because like she said, she had rug burn, it was on her elbows because she was elbowing the chair. She was
Arden Benner 35:40
yeah, we have like this. It's like this chair. It's like a giant chair sort of thing that has like, you can put your feet up or whatever. But it's like, almost like it's like a small sofa, honestly. And the sides of it. I just was hitting so hard that I had. So it was it was very weird, because, you know, like, all my kind of senses kind of leave my body. And then they start coming back to me. And at the end, it was like, almost like because I had lost the feeling in like my hands. Like I didn't really show my hands for like 15 minutes, right? The feeling starts to come back to me. I'm like, what is that? I was like, hurts so bad. It felt like someone was like, pinching me and I turned my elbow lives like oh my god, like you're bleeding. And I was like, from what? And I just had this giant rug burn on my arm. And so they clean out
Scott Benner 36:24
and you also had she had gotten her nails done that had rhinestones put on her finger. Oh, yes.
Arden Benner 36:29
And they were scratched. I was scratched the nails were scratching all over my arms. Yeah, that's the
Scott Benner 36:33
rhinestones are what scratched you when you were moving your hands. Now, why did we tell you all this as hard as leaving for college?
Arden Benner 36:40
I feel like the best part of this is that we got PJs Pancake House after
Scott Benner 36:44
and then the girls couldn't well.
Arden Benner 36:47
Let me finish the story. Yes, since since we're at one you can take it out if you're gonna but um, so yeah, this whole thing happens. We sit on the couch for a minute. And we just kind of, you know, look around. I Nadia and live like sat on the side of me and kind of like squished me in. So I just stayed where I was, um, eating my bread that you told me to eat. And then at one point, you're like, Okay, you can stop eating that it's fine. Solid, just asleep on the ground. My friends asleep on the floor again. And we're like,
Scott Benner 37:20
are you be clear, not drunk. Not
Arden Benner 37:23
high. No, no, no, we don't do any of that just to sleep on the ground because she's tired. So we started taking the bread and throwing it out or we're just trying to have fun. And then, you know, like, this whole thing happens. And you know, it's kind of hard to go back to sleep after that. So we're like, I guess we got an hour asleep today. And we all wake up our hair still like fried because we have all of this like, spraying it from like the day before. Like we didn't obviously didn't shower before we went to bed. We just took our makeup off, went to sleep. And I went, I'm okay. And not it goes off we go get some fresh air. So we went on a drive and we got the girls Starbucks or whatever. I just kind of sat there. And then we brought Saundra cake pop, but keep cake pop. But she ate and then went back to sleep after that. Just so you're all aware just to keep you updated. Um, I you know, like, took a shower and everything. We went to the Lewis house so she could shower Nadia, all them everyone showers. And then we went to PJs Pancake House. We didn't know what else to do. We weren't going to make breakfast. And we all had to eat. So we were like, okay, so we went out, we ate, we came back. And then they stayed with me that day until my parents got home because,
Scott Benner 38:37
you know, obviously, we didn't get home until 7pm. Or like at 12 hours. And Nadia
Arden Benner 38:40
was the last one there. And then her boyfriend came he got us food too, because we weren't gonna make anything.
Scott Benner 38:48
We got home and Arden was shaken. And I mean, she's at that time. Are you 17 Still at that time?
Arden Benner 38:56
Well, yeah. So when we got home, everyone kind of calmed down a little bit and started to like doze off. Like, we put like a movie on and everyone started to doze off. And I was like, I checked my phone like seven times. And I was like, okay, I can go to sleep like I'm fine. I can go to sleep. So I put my head down. But like, as soon as like, I went into like a deep sleep like I was like, and I woke up and I was like, okay, so I can't go to sleep. Um, so then I just sat there because you were nervous. I wouldn't even say like, I was sitting there and I was like, oh my god, like that just happened. I'm so nervous. I think just like, subconscious. I was like, hold like, you cannot go back to sleep. Like, just like, Wait till someone gets home.
Scott Benner 39:34
So I called you from the road. I talked to you the entire ride home. Because I just I felt so bad for not
Arden Benner 39:41
being and we told him the whole story on the way home like from our perspective, because we had settled and we were like, Oh my god. So guess what happened over here?
Scott Benner 39:48
It was crazy. But we got home and then was it it was three nights you couldn't sleep in your bed for three nights. You slept with me and mom for three nights right? Yeah, yeah. Do you know why? Like can you You'd put words to why
Arden Benner 40:02
I just couldn't fall asleep. Okay? I think I just like knew, like, Oh, he's gonna take like, he's there. He'll take care of this for like this night, blah, blah. And then the third night and I was like, Okay, what am I doing? Let me go back to bed.
Scott Benner 40:12
So at what point do you say to me? It was that night we got home. And you said to me kind of out of the blue. You didn't like, you were like, I know what happened. And I'm not worried about happening again. I know how
Arden Benner 40:26
Yeah, so this was like an odd so I feel like you talked to most kids who were my age about to go to college, 15 hours away, and they're like, I literally had a seizure four months ago, this is not going to be okay. Like, blah, blah, blah. I mean, sure, like, still in the back of my head. I'm like, Arden, you had a seizure four months ago when you were asleep. So be careful when you're asleep, like all that stuff. But I was like, I was thinking about it. I was like, none of this was my fault. Like, at all. There was nothing here. That was my problem. So I realize so it was the end of May. But like, somehow the hottest day we've ever had like that that whole year, like genuinely was probably the hottest day we've had. I was up. Let me just preface 10 o'clock is very early for Arden. So I was up pretty early. I got my makeup done. I got my hair done. I was running around doing that I came home. I did not eat anything. I got salad. Olivia I got Yeah, I got dressed. We went to go take photos. And I had a salad at my friend's house. But like barely like it was like one of those days where I was like, oh my god, like we're going to prom. Like I was like, not like not like not worried about eating. But just like I was like, couldn't eat a bunch. I was just like, Okay, let's keep going. Because we had to make it to the red carpet and blah, blah, we're moving around all day. We're moving around, it's hot outside, I'm up late, all this stuff happens. And I was just like, none of that was my fault. Like, I was like, I never say up till six o'clock in the morning. I don't even run like, I've never had this much activity in one day. I was like, and then there's adrenaline on top of that are like, like, you know, I wasn't sitting there like, prom. But you know, probably like, my body's like, okay, like, it's prom. Like, you know, you gotta look good, like all this stuff. So there's like adrenaline with all that, like jumping around all that stuff. So I was like, they're like, if this was just me, and I had had french toast sticks. And then I gave myself this insulin, it would have hit me much harder than I would have been writing about my Bolus. And I would have just went to bed. And I was like, none of this was my fault at all.
Scott Benner 42:20
The way I see it in retrospect, is that the entire day, you were probably excited. Or you had adrenaline going. Yeah. So we were looking at these amazing blood sugars for 10 or 12 hours, like 80 to like 110 at that best. And they were just they looked magical. And I thought wow, I can't believe how well you know, this is working. And you had dinner and you Bolus well, you went up a little bit 150 But you came back and you were level again.
Arden Benner 42:48
Yeah, I did everything. Even like I'm at the prom. The food selection was not like, you know, I wasn't like, you know, a resort or anything. Right? Okay, that's okay. I'm sorry, the screensaver happened again. But um, it was just like, you know, it was like a little buffet sort of thing. But it was almost like, there's so many kids in my grade that it was like, get to the buffet so you can eat. And at that point, like I wasn't even that hungry. I didn't even eat that much. I barely get I barely I had three Shirley Temples and like barely give myself insulin.
Scott Benner 43:18
Yeah. Let's see, this is the part where if I would have known that stuff, yeah, we would have set like some overrides.
Arden Benner 43:27
And I didn't know that yet. Right. I wasn't taught. Let me just let me tell you guys, this too, is the whole override thing was like making sense in my brain, like two months. So this wasn't
Scott Benner 43:41
what I'm saying. We would have just dialed back your insulin for the whole day. Yeah,
Arden Benner 43:45
I knew my dog basil. And I know what that meant. I was like, Ooh, basil.
Scott Benner 43:50
But my point is, is that the one disconnect of me not being bear is that I couldn't see how active you were. And I didn't know about the Shirley Temples. Like if you would have told, like if we would have spoken you said look, I've drank three Shirley Temples today and not really Bolus for anything. I would have said, Okay, let's do this. And, and so so
Arden Benner 44:10
I had I felt that way too. Yeah. I thought that one was gonna myself insulin for the French toast. And then I was like, Yeah, but you were like at prom. And now it's like four o'clock in the morning. Like, my like all that adrenaline was like, the only adrenaline that I had was the adrenaline keeping me awake. It wasn't like excitement. It was like I wanted to I wanted to leave at one in the morning. I was like, after that prom. I was like, I could go home and I'd be fine with this. But I did start to get low. Our bus driver, terrible bus driver, like brought us to the wrong place. We were on the bus for like an hour longer than we were supposed to be. I started to get low there too. And I was like, oh, like that's time was that. Like one maybe? And then it was like four when I ate this stuff. And I was like, three I mean, and it like it just hit me. I was like, Okay, this is over. I want to go home. I'm not excited about this anymore. or, like all this stuff. I was like, I'm not moving around. I literally sat there for like the last two hours just in a chair, like nodding off just like putting my head down. Yeah, so I had felt like the heat was gone. I didn't think like any of that was gonna affect me. Yeah. Yeah.
Scott Benner 45:13
So I think the adrenaline, the activity, the lack of sleep is a big thing.
Arden Benner 45:18
Not even just for this, but like for my brain. Yeah, I probably did not sleep for 42 hours straight after because I had trouble sleeping. That whole day, too. So if you think about it, I woke up at I had to be somewhere at 10 I woke up at nine. Then I
Scott Benner 45:36
sorry, get back to the mic. Sorry. That's
Arden Benner 45:39
stretching. Um, so I had to be somewhere at 10 woke up at nine. I got home at six got an hour asleep. woke up at seven again. And then that whole day, too. Yeah, I was awake, because I was waiting for you to get home. So I had like, no sleep.
Scott Benner 45:59
Well, anyway, there were a lot of variables. And you did a really great job with most of it, and you just didn't have it. I don't think you saw the big picture big enough. Not that it's your fault. But it just you know what I mean? Like, there were so many things happening. There was a lot of math and I don't think you got it all. Yeah, it all came together. But a couple of days later. You were eating something. And you made this like aggressive Bolus for it. And I said, like I said, that's a good Bolus. And you're like, I'm not scared of this. Like you said something like that. A couple of
Arden Benner 46:32
probably made a joke like when you think I'm scared about this now or like,
Scott Benner 46:36
but you're you don't feel scared? No. Okay. And so, what did you learn from it for school for college?
Arden Benner 46:44
That's um, I don't know just like that about the heat and all that and the adrenaline I'm moving around and I know that usually the first couple days of school my adrenaline's higher I already know that. I already know about the heat in Georgia and know about the walking and what will walk so I'm gonna Bolus later like the first couple of days on there for sure
Scott Benner 47:07
we want to be be active insulin while you're sleeping, active insulin wire. Exercising. Those are two things you want to avoid. Yeah, so we're going to try.
Arden Benner 47:19
What that means is to decrease your Basal or something, but it means don't eat too late at night. All right. I've been told that enough. But I'd like my mom
Scott Benner 47:30
to tell you. So.
Arden Benner 47:33
That's good. Oh, milk smart ice cream. Everyone. You should go by that.
Scott Benner 47:36
We told you to eat the oat milk ice cream not doing this help. Give her her proper do it? No. Really?
Arden Benner 47:43
No, because you try to like act like you'd like save my world. And I'm with the
Scott Benner 47:47
oat milk ice cream. Yeah. It was Jenny. Jenny told you. Yeah, fantastic.
Arden Benner 47:51
I'm not a part of this. I'm not affiliated.
Scott Benner 47:57
What movie is that? So incredible. Incredible. Yeah, that's great. Okay, so it really is a funny part of the movie. It's when Mr. Incredible and with the little boy's name. I'm incredibly incredibly and he's trying to like glom on to this thing. And
Arden Benner 48:13
I'm just having like, all these TV show references pop up. Now. Now I'm thinking like, Oh, you're Buffy.
Unknown Speaker 48:18
I have a Buffy Did you new girl?
Arden Benner 48:21
I was because we were talking about that in the same day.
Scott Benner 48:24
Anyway, incredibly, is trying to infer himself on Mr. Incredible and he goes, we're not affiliated. It's hilarious. I don't know why. It's just very funny. Okay, so we're going to do this together, right? Like, is that how you see College? This no different than when you're at home? We're just not going to be in the same room. As far as diabetes. Hey, Jess.
Arden Benner 48:41
And I think that there's things that you do on your end that I'm not aware of.
Scott Benner 48:46
Like, sometimes I make changes to your insulin remotely. Yeah, I've done that before.
Unknown Speaker 48:50
Yeah, yeah. Well, I
Arden Benner 48:51
feel like that's something you should probably tell me now.
Scott Benner 48:53
Yeah. Well, I think that's what I wanted to tell you is that I think that using your story about the seizure, and seeing the gaps where I didn't know things like that you ate or I didn't know that you had it, you
Arden Benner 49:06
know, like, I think, sorry to cut you off. But I think part of my problem as a person, this is an overall thing is I hate when I'm being told what to do. For example, there is a water next to me that has a powder in it. That is supposed to help my ovaries.
Scott Benner 49:22
Well, your hormones. We call it your ovary what?
Arden Benner 49:27
Oh, yeah, my ovarian water is what we call it my uterus water. But what ever, it's supposed to stop me from bleeding all over the place. Okay. When you tell me to miss this water, or to take my pills, my brain automatically says, Yes, I'll do it in 30 minutes, because I just get so pissed off. But my thing is, when it's not related to all the medical stuff, but and I'm just it's just part of my day, and it's part of my routine and I need to do it. That's fine. So maybe we could do that. A daily check ins on what we're eating for lunch. But it doesn't need to be because of the blood sugar. It could just be because I'm showing you what I need to eat. That would make it better. Like, hey, look, this is what I'm eating for lunch, not like, hey, looked at how many carbs is this? I don't want to do that. That's not that just infuriates me.
Scott Benner 50:17
Well, would it be okay, if I texted you? And asked questions? Just like, are you particularly Are you are you being like, if I looked and I saw you were like, like, lower today? If I said, Are you walking a lot? Would you say yes? Or would you be like, I'm not answering this question. But do you have to bleep that? I mean, I will have to bleep Oh, that's so boring. It's no, it's kind of fun. So you could still tell us I had a couple of times, we have to bleep it. I mean, just gonna make more work for me. Please do it. Go ahead.
Arden Benner 50:50
I know, I feel like I didn't really say it there.
Scott Benner 50:53
Well, you can mix it in like, oh, so so that's what I was just thinking like, let's take the lessons of that night from your prom. And remember, what I didn't know that would have been valuable for me to know. And what you didn't consider
Arden Benner 51:06
my sag room serum.
Scott Benner 51:08
I definitely don't know what that is.
Arden Benner 51:09
plus b squared equals c squared dad's easy.
Scott Benner 51:14
And you can take into account what you didn't give the proper weight to. And between those two things. Oh, we're gonna be okay. Well,
Arden Benner 51:21
this seems like a
Unknown Speaker 51:21
problem. No.
Arden Benner 51:23
I think you're, this is a good therapy session, your problems are probably just not knowing what to eat. And mine are just not knowing how insulin.
Scott Benner 51:34
If I knew that you Bolus at 3am. I know you said that would have changed. I know. And if I would have known you were taking in so many uncovered carbs during the day. I'm being lectured. No, no, then that would have been something I would have been valuable for me to know. Okay. And you need to remember about activity heat, lack of sleep adrenaline,
Arden Benner 51:53
all that stuff. Yeah, that was really a really good lesson for me.
Scott Benner 51:56
It was a really good lesson. I bet you don't forget it.
Arden Benner 51:59
No, I thought was a great problem. Everyone, by the way, prom was horrible. Let me just put it in there. Literally, like the most boring thing I've ever went through my, my eighth grade formal was. I was at prom. And I was like, what, what are we doing? Like, let's go home. Like, I looked good. And I got my photos. And I'm, I'm, I'm done. Like, let's go home.
Scott Benner 52:20
Yeah, it was a weird thing. They kept them out. Like literally, it was
Arden Benner 52:24
obviously for like drinking and drugs. And they didn't want us doing that. Which by the way, I've never done my life. And I would have been happy to go home and go to bed or watch something on TV. But they left which honestly felt like a safety like thing that they should not have kept us up that late. And it wasn't even like, like some kids fell asleep there. But it was almost like you fell asleep and they were like, hey, like get up like your prom. Like, no, like, let us go to bed. It's five o'clock in the morning. Alright,
Scott Benner 52:49
so it's getting late here. I want to go over two things before we go. First thing is, so everybody listening knows that you've had different troubles like with your stomach getting your periods been amassed, and everything like that. And so over the years, we've tried so many things, which I'll encapsulate in some episodes somewhere. But we really feel like we've come to some sort of a, like a breakthrough and a
Arden Benner 53:11
couple of things. I don't feel like this is a breakthrough. But I mean, you don't think of it that way.
Scott Benner 53:16
Well, that is it overall. Is that the ovary water? I didn't make it. How would I know that? So which so you're bleeding was very irregular, erratic. Right. And much longer than it should have been. So we tried birth control pills for like a year and a half. Probably
Arden Benner 53:34
yeah. Which by the way, I've been off of those for I don't even know how many months and much better yet, like thinner to get you didn't gain a lot of weight. You did not like it at
Scott Benner 53:43
all. And it did something so the note the once a month those bleed, stopped with the birth control pills. And the 11 day long periods stopped with the birth control pills.
Unknown Speaker 53:56
Right. Yeah, but definitely wasn't pregnant.
Scott Benner 53:59
And but, but it didn't like it wasn't like a cure all. It had other problems. One of them was your insulin needs went up. Yeah, sure. Yeah. Like pretty significant. Not home. Probably. Not on prom night. But but you're but yes, it did. Because on prom night, your insulin was like 1.2 an hour. And today, do you know what it is today? No, I have no idea. It's like point nine. Wow, it's a significant decrease. Your insulin sensitivity on prom night was probably like 41. And today, it was like 47. So your insulin needs are going the other way. And I think it's because you're drinking this stuff. And it's balancing your hormones out. Yes. So we have to drink Sherlock. Well, I feel like that a little bit because this was not easy. This was not easy to figure out. So you have to drink this every day. Like I had a heaping scoop of it once a day mixed in water doesn't taste like anything, right? It's not a big deal. The other stuff we figured out because you weren't like yeah The schedule. Arden was like really constipated for me. So, I mean, I'll have to bleep that out.
Unknown Speaker 55:06
Are you serious? Yeah, I think so.
Arden Benner 55:08
Oh, this Todd.
Scott Benner 55:11
But, but, you know, of all the different things that we tried, we finally got a, like a biopsy did an endoscopy, right? And they looked in there, they saw your stomach was inflamed and that you weren't like food, just get your food. Digestion was slow. And so all we ended up doing was adding a digestive enzyme to meals. And it has made like a really big difference, right? Are you yawning? It is like, yeah, it's
Arden Benner 55:42
- And we have to leave it five but yes, yeah, yeah. Better. Oh, sorry.
Scott Benner 55:47
We added a digest loving can say I digested enzyme to two meals. We added magnesium. Once a day and a probiotic once a day. Yes. And it's made a big difference, but not just for you and your digestion. But it's made a big difference about your boluses too. Yeah, yes. So you've been needing less insulin. And you've have not been having spikes through meals that we normally see spikes through.
Arden Benner 56:17
That would be correct. Yeah. It's pretty good answer. Amazing. Write to me. We did not add those things. We added that, That? That? pill bottle, that pill bottle, that one and that one right there.
Scott Benner 56:29
There. It's fixing a lot of problems. So I just between you and I, I don't want to bug you while you're in college. That's not true. I really don't I don't want to bug you. I just need you to do these things. Okay. I agree. That's it. Okay. So let me just go over this with you very quickly. And then I'm gonna let you go. Your Basil is super important. If your basil is wrong, everything's gonna be messed up. Just try to listen for a second. I'm definitely with my eyes closed, right? You have to Pre-Bolus your meals. Right? You have to do a reasonable carb count on things. You can't just whack ass guess everything. Okay, I'm gonna have to try to get some carb counts for
Unknown Speaker 57:08
something. I'm,
Arden Benner 57:10
I'm a great guesser. Okay, try not
Scott Benner 57:12
to have active insulin while you're while you're exercising or walking to class. Right? You don't want to have a bunch of don't walk. Okay, active insulin. We're going to try not to eat late at night. We're going to try not to make big boluses late in the evening. I think that's going to be a big help.
Arden Benner 57:30
So don't eat and don't walk.
Scott Benner 57:33
Don't walk, don't eat. Don't breathe asleep standing. Now, but that stuff makes sense. Right?
Arden Benner 57:43
Good answer. Yeah,
Scott Benner 57:44
it does make sense. Okay. So those are the things that because you have to understand that when I'm not there to see what you're doing. I can't tell you hey, are and try this or try that. Like, you know, it's so it's going to be a lot of us. Hopefully talking Do you think we'll talk by phone? FaceTime?
Arden Benner 58:01
This feels personal.
Unknown Speaker 58:02
How do you how do you think we'll do it?
Arden Benner 58:05
Maybe WhatsApp, since I'll be
Scott Benner 58:07
using it. Oh, Cassandra is going to London. Yeah.
Arden Benner 58:12
Just do a bit WhatsApp. So fun.
Scott Benner 58:16
So we're just gonna have to stay connected a little bit till we get everything settled. And then I think the biggest thing is that you can't I don't want you to living scared. But you can't also think that it's just magically going to be okay. I
Arden Benner 58:30
mean, there's other things to worry about, like a rape. You're sure you could
Scott Benner 58:33
be sexually assaulted? Yeah, sure. Are you taking your taser?
Arden Benner 58:38
Oh my God, I didn't pack my taser. Should you think I should?
Scott Benner 58:41
I mean, your cousin gave you a taser for your birthday. I don't know why you wouldn't take it away. Yeah, I'm not sure if you're allowed to have a taser by the way. Why not? It seems dangerous.
Arden Benner 58:53
Yeah, but they can't stop me.
Scott Benner 58:56
You don't think the school can't say you're not allowed to have a taser? I don't
Arden Benner 58:59
if you're walking in a city alone that you have no right over what you can have. Yeah, I guess so. If you can have pepper spray. Right. Can you have a taser?
Scott Benner 59:07
I don't know. Let's find out. Also the school was really great about setting up accommodations
Unknown Speaker 59:12
like letting you have another these people
Arden Benner 59:13
know where I'm going. Don't tell them I don't think they exactly Chicago. You can all find me in Chicago for
Scott Benner 59:23
me the Windy City. But they were nice about allowing you to have a small insulin refrigerator in your room. And they're gonna let you put supplies because your your classes are going to be kind of spread out across the city. Yeah, yeah. Yeah. So they're gonna let you put supplies in different places.
Arden Benner 59:39
We have more time i i talked about that.
Scott Benner 59:41
Yeah, well, we will how far my classes you're gonna come on the podcast while you're at school to be a good time for us to chat. I might be busy that day. No, you all go into school to be a neuroscientist. Um, no, I hate that. You can't curse. You can't curse. It just has to be bleeped out. No, but it wasn't really a curse. It was really it was harsh. Well, alright, so do you have anything you want to say? Do you know that you have the second most popular episode ever on the box? I should? Yeah. Yeah. You know, it'd be you
Arden Benner 1:00:16
can I guess? Sure. Isn't one of the people who's like founded this stuff or something.
Scott Benner 1:00:22
It was the announcement of Omni pod five. The CEO came on. Yeah, the CEO. Yes. Yeah. Yeah, that's what I just said that one has a couple 1000 more downloads and a couple of very, they're neck and neck. It's probably like their wife or something. Do you think people are gonna be like, like, so? The reason I think it's valuable to tell your story about prom night, too, is that after the shock was over, and after we examined what was done, and what we do. We didn't go backwards. And I know and I've interviewed a lot of people who have lived for years with very high a onesies because they've had a low blood sugar. They were scared and they stopped taking good care of themselves because of that. But that I was very proud of you that that didn't happen to you. So being serious. Yes, it was. Don't Don't be stupid.
Arden Benner 1:01:10
I'm not massive, but I'm being this my serious voice. No, I was
Scott Benner 1:01:13
I was really proud of you the way you bounce back from it. It was a it was a lot to handle. And, and you did a really admirable job of, of thinking it through. And then just moving on. I thought that was really great. Yes, seriously. So now you've had what? I heard what? You've had three seizures. I don't remember what you were a little baby. You were two when you had your first one.
Arden Benner 1:01:37
You know whose fault that was? That was your fault. Yeah, yeah. You've done about here. I get you guys listen to this guy.
Scott Benner 1:01:43
Yeah, Arden tried to eat Chinese food when she was two. We did not know what she was doing. That was not great. We fix that one with glucose gel on your cheek. Which by the way is what happened because those girls were squirting juice in your mouth. It was probably just being read. Do you think you were swallowing it even?
Arden Benner 1:01:57
That I have
Scott Benner 1:02:00
no other question then the second time it happened? We were in Disney when you were like four maybe I hate
Arden Benner 1:02:05
this new world. I know you don't like if any of you like this road. Guess what? I don't.
Scott Benner 1:02:10
Okay, you everybody doesn't have to like the same thing. But what you got a popsicle after a long day of activity. And I didn't know not to Bolus? Yeah, I didn't know. And we fix that with glucose shell too. I've told that story on the podcast before that was funny, because he ends up with glucose Chelek all over the ceiling of the hotel. The hotel room? Yeah. Oh, I
Unknown Speaker 1:02:29
don't know. That's, that's great. I'll tell you about.
Arden Benner 1:02:31
We all know more about me than I do. That's probably true.
Scott Benner 1:02:33
Yeah, this one was genuinely scary. Because we weren't around.
Arden Benner 1:02:38
Yeah, and because I'm gonna like an adult now. So I'm like, Oh, my God. I'm gonna die. Okay.
Scott Benner 1:02:43
You have more context. Yeah. What happened to Yeah. Well, I hope you have a great time at college. Thanks. I'll talk to boys. They're talking to boys. Don't do drugs. Don't drink
Arden Benner 1:02:59
never done drugs never drank. I drank once actually, some wine mom put on the turkey. That was it.
Scott Benner 1:03:05
So do you think much will change about who you are in college?
Arden Benner 1:03:10
No, not at all. Honestly, really? Not at all.
Scott Benner 1:03:14
Do you think Cole thinks you're gonna change? I think whole wishes I'm gonna change. Today, I felt like he was saying like, you'll see what happened. I felt like today it was a little personal. No, I felt like he was saying you'll see what happens when you go. Like he's,
Arden Benner 1:03:27
I mean, maturity, probably like Libya. But I don't think like, I'm going to change, which I'm sure a lot of people like a lot of people who are like, Oh my god, I'm never gonna do that. And blah, blah, blah. And then they end up you know, like, heroin user, but I know it was a leap. But yeah, but um, I don't I just genuinely don't give it. You took? I don't just I just don't care about any of that stuff. At all.
Scott Benner 1:03:51
I think you're gonna be fine. Yeah, and we're gonna take care of you. And yeah, just like candles, so they won't let you like candles. You'll be like, gonna do just not like candles. I can't bring the dogs either. Oh, my God. Are you gonna miss the dogs?
Unknown Speaker 1:04:06
Oh my god. Yeah. It's upsetting. Yeah,
Arden Benner 1:04:09
you guys will be fine. It's It's upsetting that they don't know why I'm gone. Like, I can't look at the dog and be like, I have to go to college. So I won't be here. It just feels like I've lost them.
Scott Benner 1:04:20
Yeah, you've abandoned them.
Arden Benner 1:04:21
Yeah. What do I say?
Scott Benner 1:04:23
There's nothing to say. Oh, they don't understand and they give you the puffy eyes when you leave. I can't do they're only puppy eyes because they're puppies. Okay. Well, I appreciate you doing this very much. Yeah, I
Arden Benner 1:04:33
have a lot of oil on my hair right now.
Scott Benner 1:04:34
Yeah, we're gonna go we're gonna go rinse your hair. Yeah. All right. And then we'll go out to take you to school. All right. Yeah. Okay.
Arden Benner 1:04:43
Thank you. If someone has listened to this all the way to the end. I'm sure they have. I feel so sorry. Why to any of the story? No one. Well, listen, I'm fantastic to listen to. But I'm saying like I'm so sorry.
Unknown Speaker 1:04:58
I don't understand why I'm Never know
Scott Benner 1:05:03
why this podcast is incredibly
Arden Benner 1:05:05
say it wasn't okay. I said personally, you know how we all said Not everyone has to like Disneyland. Not everyone's gonna like the podcast. Do you know
Scott Benner 1:05:12
I'm gonna send you episodes of the podcast while you're in college? You
Arden Benner 1:05:15
know, I'm gonna be busy. But particularly the exact time you send the episode, I'll probably get busy right then
Scott Benner 1:05:22
Well, let me say this before you go, Oh my God, you have been taking care of yourself almost exclusively for like a year now. And we've been doing that on purpose because you're getting ready to go away to college. And you've done an amazing job, like really, really good. You've kept your a one see where it's been. You know what I've done. You've been more in the low sixes over the last year than you had in the past. But you were fighting against the birth control pills, the hormone imbalance stuff, as a lot of a lot of stuff. I actually think you're gonna find it easier as we're moving forward to manage the insulin because you're doing those other things, but you did a really great job. So I'm proud of you. And I think you're going to be fine. I think if I dropped dead right now, you'd be okay. I think you'd have
Arden Benner 1:06:04
to look up dropping dead like seven times. Today.
Scott Benner 1:06:08
It's a dropping dead episode. But
Arden Benner 1:06:10
like I should you name it. Drop dead. Gorgeous.
Scott Benner 1:06:14
I think your name is going to be oh, what? What if we call it like Arden's leaving for college?
Arden Benner 1:06:18
No, that's so boring. Okay. All right. It goes to Chicago. Like the whole time we're like, what the heat down like where I'm going and all the South
Unknown Speaker 1:06:27
Georgia. Dad think we did. Crazy pupil.
Scott Benner 1:06:31
There's definitely a few crazy people listening, but but not all, most of them are really nice. Like, more than what I know. Most of the people listen to podcasts are lovely. Okay, yeah. Okay. All right. Do you have any messages of hope? Hope? First thing I imagined you didn't have?
Arden Benner 1:06:50
Um, what are my last words gonna be? You know, I already said in case there's like a fatal car accident or something like that. What do you mean? No, my last words.
Scott Benner 1:07:03
Do you know? Do you think people would know that you and I were talking the other week? And we were like, we said that? Isn't it crazy that somebody's going to leave for college and die on the way?
Arden Benner 1:07:13
Oh my god. Yeah. They live their whole life to go to college. And then they're just gonna drive there and they're gonna die. Somebody Won't somebody want me? Yeah. Or like there'll be paralyzed or just something's going to happen to someone who's going to school right now. That could be off just so you guys know. I'm not saying that. You should do this. But fair warning. You should not do this wink wink. But if you get hit by a bus that is under your colleges name, free tuition.
Scott Benner 1:07:42
You know that?
Unknown Speaker 1:07:43
I hear that on Tiktok? Um, well, yeah.
Arden Benner 1:07:48
I buzz and free tuition. And then someone said this is at every college if you get hit by one of their vehicles that the school owns you get a free tuition.
Scott Benner 1:07:58
I don't think that's a rule. I just think that's something that school does trying to get us on Tik Tok, or did I In fairness, I didn't learn about in tech. That's what I'm saying. Alright,
Arden Benner 1:08:09
1220 a, I
Unknown Speaker 1:08:10
will say goodbye.
Arden Benner 1:08:12
No, I don't do goodbyes. How about your farewells?
Scott Benner 1:08:15
Do you think you'll cry at all in the next couple of days? So we're going with driving tomorrow? And we're spending a couple of days mom and I and they moved in the neck. We're gonna move you and you're gonna be in your room, but we're gonna stay behind. Do you think I'll cry? Okay, here's what I let's do it like this. Who's gonna cry first? Yeah, that's fair. Because you've already cried, cried yesterday, in the two days ago. And we're in the grocery store. shot that I was kidding about. I cried the difference. I saw you crying my room yesterday. I cried in your room yesterday. Yeah. When we were packing, and you're sitting on my bed. I said then yeah, yeah. I'm saying let's try to get away with that. So you think I'm gonna cry first there. And then who is least likely to cry of the four of us? Coal? Probably right. I did not cry when coal left. Right. I was a comic relief when coal left. Do you wish it was a terrible story, by the way? Why? Because we're driving home. That hair is too low. Well, you can come back on until that sorry. So we're driving.
Arden Benner 1:09:18
And they're trying. And I went well, at least I'm here trying to be like funny in a way but also like, Hey, guys, like it'll be fine. And the both of them just like, look back at me. Like so. Like, you know what? Shut up. It's not Oh, no, you know, that's how it felt. And they just looked for it again and kept crying. I was like, Okay, that
Scott Benner 1:09:38
is not how we looked at you. Anyways, cold calls the least likely to cry and I'll be you mom. Will you cry? So here's my thing.
Arden Benner 1:09:47
I'm not the type of person to be like, Oh my god, like my family's gone and bought cars. Like, in my mind, I'll be home in like three months, right? Yeah, everything will be fine. But I think the only thing that makes me upset is the Dogs honestly, like, I'm being genuinely serious.
Scott Benner 1:10:03
Let's just Let's just make sure people understand. Have you ever cried in a movie? Twice? And what was it?
Arden Benner 1:10:12
Well, one of them was the Avengers. Endgame right. When Morgan asked for the cheeseburger, I cried. It wasn't even when Tony died. It was when she asked for the cheeseburger. That mean I don't even know I that made me cry. It was just very emotional to me. And I cried. I cried watching Hotel for Dogs. Why? I don't know. But you came downstairs and I was like, why am I wet? And I was like, oh my god, I'm crying. I was like, nine, two. But it wasn't even about the dogs. It was when they got because they were foster children and they get separated.
Scott Benner 1:10:48
Right when the foster kids got separated. That's when I cried. Really? Yeah, that's nice.
Arden Benner 1:10:52
I didn't cry about the dogs, which is weird.
Scott Benner 1:10:54
You don't think you're gonna cry once while we're down there.
Arden Benner 1:10:57
But like a heart like when you guys are there? Yeah. No, I don't think that's me. I don't have a lot like me. I think like maybe once you leave, and I'm like, I don't think I'll like hardcore cry. Because for me to hardcore cry, you gotta like really get the last time you cried like that. I don't know if I should tell the public about our family issues.
Scott Benner 1:11:20
But when we had a big family meeting, you cried.
Arden Benner 1:11:23
Yeah, that was tough. Yeah, let's just put, it was tough for all of us. Um, you know, it was tough. But for all of us, by the way, it was a it was a knife to the heart that meeting for each of us in our own separate ways. But, um, that was last night. Like, genuinely cried. Yeah. But like, I'm sure like, a tear will come down my I'd be like, oh, like, I missed the dogs and, oh, they're gone. But they'll probably be like, Oh, no, I'm gonna do something like a friend.
Scott Benner 1:11:54
Okay, well, it's good. I think you're gonna do great.
Arden Benner 1:11:57
I've been told that a lot. But I feel like you have to say that. So
Scott Benner 1:12:00
you think that I have to say you're gonna do but like everyone I talked to you have to be like, You're gonna do great. If I didn't think you weren't gonna do right. You don't think I would say something?
Arden Benner 1:12:09
No, I do think you would say something. I'm not talking about you.
Scott Benner 1:12:12
Do you think I've treated you any differently? Since the seizure? About going away to college? Oh,
Arden Benner 1:12:21
probably a little, like a little more. Like, I don't think you've treated me differently. But I think you've been more like, a little more pushy. Like, aren't you gotta know this, man. What? And then I'm like, yeah.
Scott Benner 1:12:35
It's weird, because it wasn't because you didn't know any. I mean, it was just such an odd situation. I three hours before it happened. I was looking at your graph, and I would have never imagined anything was gonna happen. Yeah, so it was really crazy. And having and having said that, I mean, you're 18 and the last time your blood sugar got that low. You were four. So yeah, I am 18. Yeah, yeah, you just got to wake up when you're so now it is technically legal day Tom Holland. If you day Tom, do you want to put it out there in case you in case Tom Holland hears? I think it's like your brother's a diabetic or happen to be listening. Yeah, something like that. What What was I just gonna say? I forgot what I was gonna say. It's easier to by the way interview people when you're in the same room. This is way easier than the way I do it usually. You're welcome. Thank you
Arden Benner 1:13:30
for living here. And taking all your money.
Scott Benner 1:13:33
Yeah, and everything else. Our cars are completely full of stuff. Matos Arden took enough clothes to like clothe seven girls while she's there. So yeah, I can't wait for you to come home be like, I'm not bringing this many clothes next time.
Arden Benner 1:13:48
I probably will. But you know, for now. Yeah, you got Oh, I got it all
Scott Benner 1:13:53
you got to figure it out. All right. Well, I love you. And I'm gonna have I'm gonna miss you a lot.
Arden Benner 1:13:58
That wasn't really sentimental. Because when you said that I was burping.
Scott Benner 1:14:02
Can I tell you what I really care about?
Arden Benner 1:14:05
Money? No.
Scott Benner 1:14:07
I mean, I mean about you, going away. I just want you to be as unencumbered as possible by diabetes. That's a big word is a big word. I just don't want you to have to think about it very often. And I want you to be safe. And other than that, I kind of don't care. I think I don't care what else happens. I want you to take the army to drink that water.
Arden Benner 1:14:28
It's gone, by the way, but I felt like sipping it in this microphone was probably not the best
Scott Benner 1:14:33
of what you did drink the water. Take the pills, take care of your health. Watch your blood sugar, learn about your blood. I would it would be great. If you came home three months from now and you're like, you know, I recognize that this food needed less insulin than that food.
Arden Benner 1:14:50
I'll probably I do know that about other things too.
Scott Benner 1:14:54
The funny thing about diabetes with you is you know a lot of it you can't articulate any of it. cuz I don't care. No, you do? No, like,
Arden Benner 1:15:02
I care to stay alive. Yeah, I don't care about this. No, no, I know. But like, if someone if, if I was at one of these events you go to, to talk to people. And someone came up to me and started talking to me about diabetes, I'd looked on their face and be like, I'm so sorry, I don't want to talk about this, like, you need to get away. Well, you wouldn't do that. No, I wouldn't put it that way. But But I would be like, I just I'm not gonna have a conversation about what
Scott Benner 1:15:26
I'm trying to say is that I know what you know, and I watch how you handle things. And your understanding of it far exceeds your ability to talk about it.
Arden Benner 1:15:37
I just don't like talking about this. I know, it's not like it makes me uncomfortable. I'm not even like that. I'm bored by it. But like, I feel like a lot of people get this disease and they get wrapped into it. And I think it's good that people listen to this and join communities to you know, figure it out. But on my end, like I haven't figured out and I'm not like a like, if I don't have to talk to people. I will do that. You know what I mean?
Scott Benner 1:16:03
So I understand everything you're saying, but you're missing my point.
Arden Benner 1:16:07
I'm not missing your point. I know what you're saying. And I don't know how to articulate it. Apparently,
Scott Benner 1:16:11
you're not good at explaining what you know about diabetes. But you are good explaining what you know about other things. Like what? I don't know, you're like, we have many lovely conversations about things where I don't feel like you struggle to put into words what you're trying to say. But you know how to do diabetes, you don't know how to talk about it. Which is fine. I don't think that matters.
Arden Benner 1:16:34
I think it's because I don't enjoy talking about this. No, no,
Scott Benner 1:16:37
I see that. Yeah, I'm very good at talking about oh, who are you? I am thanks for telling. But I don't even know why. Because it's a lot of technical stuff. You love talking here, but I could talk about anything. Yeah, that's fine. Just said, but this shouldn't be a thing. I'm good at. Like, based on my personality.
Arden Benner 1:16:56
All this feels like it's about you. Now if this was my episode, okay. Just make your own episode, if you want to talk about your dad. Okay, I'll do that.
Scott Benner 1:17:04
I'll interview you. Well, you Yeah. Okay. We'll do that next time. But you have to make the questions. That's a moderator, not an interviewer, then I'll moderate. So you want me to ask myself questions that you'll read to me. They don't need to know that. Don't think they need you in that scenario. What if we let people ask you questions? No, you don't want to do a q&a? No. Do you think you would come on the podcast while you're away at school? No. Well, thanks.
Arden Benner 1:17:35
That was my polite voice.
Scott Benner 1:17:36
All right. Say goodbye to people. No. Thank you. All right. I'll talk to you later. I mean, like, as soon as I push pause. Well, usually when I'm done talking to people, I'm like, Well, I really appreciate you doing this. And then I'm not going to see them again after I push the button. So I'm saying thank you for coming on the podcast.
Arden Benner 1:17:56
Oh, to me. You're talking to me. Yeah. I'm
Scott Benner 1:17:57
telling you. You were not looking at me. I was very, I was getting ready to click on some Oh,
Arden Benner 1:18:02
I thought you were talking to like your your listeners.
Scott Benner 1:18:04
I appreciate you doing this with me. Yes. Okay.
Unknown Speaker 1:18:11
I can we can say You're welcome. Thank you. You're welcome. Excellent. This has been fun.
Arden Benner 1:18:18
Well, it would have been fun four hours ago
Scott Benner 1:18:20
goodbye. A huge thank you to one of today's sponsors, G voc glucagon. Find out more about Tchibo Capo pen at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juicebox. I'd also like to thank Dexcom, makers of the Dexcom G six continuous glucose monitor and remind you that you can find out if you're eligible for a free 10 day trial, the Dexcom G six or just get started@dexcom.com. Forward slash Juicebox.
Podcast just a couple of hours after this was recorded, we got in the car and drove Arden all the way to her new College in Chicago, right? In Georgia, and she's doing terrific. She's been there for a week today. And she's having a great time I made some terrific friends already. her roommates are fantastic. And we sat at a lunch last weekend and explained diabetes to all of them, showed them how to use Chivo Capo pen explained the insulin pump and everything that Arden does. We got all their phone numbers and everything's been going really well actually. Don't worry about it and she's doing terrific. But I wanted to point out that when we started this recording, I really didn't think we were going to talk about this Not because, you know, we're hiding it, but we just sat down to talk about management stuff. And then, I mean, you heard at the beginning of art and just got very honest and, and started telling her story. And so my hope for you, after hearing this story, I mean, really the takeaway I want you to have is one of resilience. I want you to remember that something scary happened. And it didn't change how Arden takes care of herself. Right? We understand, maybe more what happened that day, and we'll be able to protect against it in the future. But she saw it for what it was. And she didn't let it stop her from wanting to take good care of herself. As a matter of fact, as I'm sitting here, I just opened up Nightscout, which if you use loop, you know what that is. And I see that Arden just Bolus for dinner. 70 carbs. So her blood sugar is 104 She Bolus she's out there living her life. I think I've interviewed one too many adults with type one who have had a scary low and they let it they let it impact how they take care of themselves for years afterwards. And it really was my biggest fear after Arden safety was clearly you know, locked down after this whole thing. My first and biggest fear was that she might be scared to take good care of herself after this. And I'm just very grateful that she wasn't and I hope that you can take some of the some of the bravery some of Arden's attitude and keep it for yourself. Because every day with diabetes isn't gonna go the way you want. But you have to you have to dust yourself off and keep going. I'm very proud of her. I hope you enjoyed this conversation. I'll be back very soon with another episode of The Juicebox Podcast.
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