#305 After Dark: Trauma and Addiction

Donny’s journey

ADULT TOPIC WARNING. Frank discussions (with some harsh bleeped language) about drug use, child molestation and other potentially upsetting topics.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello, everyone, and welcome to Episode 305 of the Juicebox Podcast. Today's episode is part of the after dark series that began back on episode 274. When Maya came to tell us all about drinking and diabetes, do you remember that one? Very good. And then again in Episode 283, Alex came on to talk about smoking weed with type one. And today, Donnie is going to tell us about some traumas in his life and his battle with addiction. So, if your kids are in the car, not not this time, okay. And any kids who listen on their own, please stop the program. Go tell your parents, Scott said this one's probably not for me. But I asked him if they'll listen to it first. Maybe they'll tell you it's okay. I don't know. I'm not in charge. Your mom and dad are. Today the podcast is sponsored by touched by type one you can go to touched by type one.org. To find out more. The podcast is also sponsored by the insulin pump that my daughter has been using since she was four years old. The Omni pod on the pod, of course, is the world's only tubeless insulin pump, you're gonna love it. Actually, you can get a free no obligation trial, little demo pod sent right to your house by going to my on the pod.com. forward slash Juicebox. Podcast is also sponsored by Dexcom, makers of the G six continuous glucose monitor. The G six is the foundation of how we make all of our insulin decisions with my daughter. And then of course, we put them into practice. With the Omni pod, check out dexcom@dexcom.com Ford slash juice box. There are links to all of the sponsors in the show notes of your podcast app. And of course at Juicebox podcast.com. Thank you for supporting the sponsors. This is a long episode. So we're just gonna jump in. Before we do that, I have to tell you that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And always consult a physician before making any changes to your health care plan for becoming bold with insulin. This is Donnie.

I'm not going to I thought about this a lot. I'm not gonna hide what happened. I'm not going to ask you to come on and pretend we never spoke before that just that'll be still.

Donny 2:37
I'm more worried about like gamma was so good. Last time. I hope we can repeat it.

Scott Benner 2:41
So I I really did have that thought. And I'm recording now like, I just thought it was so perfect. Like when you and I got finished. I thought I looked at my schedule. And I was like I'm gonna move that and that and that I'm putting Danny's out right away. Oh, it's just like, it's so perfect. And so plush are so excited. I was like, This is great. I felt like I learned something I felt like, you know, like, and not only that, as crazy as it is. While you and I were recording, we both found out together that Kobe Bryant died in a helicopter crash. Yeah. And it kind of fit into the conversation. And there's no way to repeat. I mean, you know, we're not repeating that again, hopefully. Oh, my God. Can you imagine someone else dies while we're recording? Well, I'll let

Donny 3:32
you know what though. Like, I just listened to one of your podcast and I I'm sorry, I don't remember the name. But it was the woman who? Her children died in a car accident. Yeah, that one's tough. Hmm. And like, I don't know, dude, like, you know, to do this one. And I was kind of the same way with sports, I could do it the first time. Second time is always difficult. Third time, I'm good. I got it. And I was like, you know, a little nervous to do it again. And like, I'm just kind of a nervous person. And then I was like, listening to that podcast. And I was like, Oh, I'm supposed to do this the second time.

Scott Benner 4:09
Now, I appreciate that. And I and I'll tell you to, I think yours is going to have a very similar impact as hers has I sent and an email yesterday with no fewer than 30 notes for her that came in. And they all had a very similar theme, which was I didn't I'm always thinking about how difficult this is for me, and how much I don't want to be doing it. And what she said just made me realize I need to be grateful that I'm here and I'm doing this

Donny 4:41
and the fact that she did it for our community when she you know, doesn't need to she wanted to and I think that says a lot for human nature mankind. When you find the right people, you know, life can be okay.

Scott Benner 4:57
Yeah. No, I agree with you. I'm glad you listen to that one. Now when I, I, I get notes from people that are kind of private to like, Oh, that must have been difficult. And I'm like, well, it's not as difficult as it being her story, you know. But I recorded it with her, then I ended it. And then I put the ads into it at the front, the back the bumpers, so then there's more time, I'm listening to it. And then the last thing I do is I listen through it for audio. And so I had heard it four times by the time you heard it, and it's it doesn't get easier as you're listening. Like I cry at the same places. Every time I'm listening to it, and so hopefully, that that's meaningful, and it's helping more people that I'm hearing back from even I imagine. I'm sure, so I'm glad. Okay, so I just have to find a way. Do you have any ability? Actually, I know what to do. Hold on one second. I'm gonna kind of artificially volume you up on this side, I think.

Unknown Speaker 5:59
Yeah, I'm not sure why I'm so far away. I apologize. I'm using the same headphones from last time.

Scott Benner 6:03
No, it's my it's, I have a little setting here. I'm just gonna move it up for right for myself. Yeah, there we go. You're perfect. Okay. So it's 100% possible that some of that's gonna stay in. But still, we're gonna introduce you and get started. Introduce yourself first, and then I'll explain to everybody why it is You and I are speaking twice. And they're only here you want?

Maia 6:27
Sure. Well, my name is Donnie. I am an addict and recovery, and I have type one diabetes.

Scott Benner 6:33
Okay, and so any of you that have listened to the show, know that I had a piece of software auto update, and it changed the setting. And that I lost three conversations that I had because of that setting. And very, very regrettably, damis was one of them. He and I did 90 minutes together that I thought were riveting and enlightening. And I felt like we listened. I felt like I was listening to Donnie have like personal, you know, epiphanies going and and he explains things about his life in a way that. And Donnie, I truly mean this, that you explain things to me in a way that took me to a place that I had not personally experienced. And it made it crystal clear to me your perspective. And why what you were saying is something that I as a person who doesn't have the experience should just accept, like generally mean like not Yeah, I didn't think oh, he's probably saying this because of that, or but I just thought this is I understand what you're saying.

Maia 7:38
So I appreciate that. I don't

Scott Benner 7:40
think you're gonna lose that skill in our second recording. And for all of you who are wondering, I'm seeing Danny's voice and I've listened back to it. And it's all being recorded. So let's go.

Maia 7:53
Glad you're doing your job. Scott.

Scott Benner 7:57
In fairness, Donnie, you, you did all the stuff we talked about, right? And and you came through, you showed up and you're like, Listen, I got the life experiences. I've got the stories. I'm putting them out. All you got to do is record them.

Maia 8:10
I mean, if you were to tell them that what a hit record on my end, I didn't realize No,

Scott Benner 8:15
no, I had to do all this stuff. Hold on one second. I have to ask me to help Arden with her blood sugar for one second.

Did you test Arden's on the first day of a dexcom sensor? Okay, and in I am a I'm a fervent believer in testing on the first day until it settles in. I don't know if that makes sense to people who use Dexcom. Maybe

Maia 8:48
I did when I first got it. But it's my never off

Scott Benner 8:54
in that nice house. It's so interesting, because I hear back from people were like, oh, mine on the first day or this happens. And I'm always like, well, this is my experience. It always works terrific. I'm a little bit more careful on the first day. And just by careful I mean I test more frequently are as garden too. And then after that, I'm with you. I just roll with it. I think you can tell as a Dexcom user, like, you know, when it's working, you know, they mean like yeah, and yeah, and it hits a long sweet spot during the sensor. But I do hear other people who say differently. And I never, you know, I have no perspective. So I'm like, No, that's not what happens to us. I don't know how to talk to you about it.

Maia 9:32
It's so crazy how the same disease affects Everyone's so differently, like, so differently. It's crazy.

Scott Benner 9:38
It's it really does sometimes come down to it's like body chemistry. It's you know, it's something as simple as hydration or, you know, like one of our friends says it when she gets her period. It gets a little wonky for a while, you know, all kinds of weird stuff. So okay, so I want her to

Maia 9:57
calibrate

Donny 10:02
I don't think I've calibrated my G six one. And that's something. Yeah. I mean, I sometimes like if I have my two hours center warm up Is that like a funky little period? Like, if I want to go to the gym and workout, I'll test but normally I'll time that two hour window when I'm not doing anything or like, after a meal or you know, things like that.

Scott Benner 10:22
It's interesting. It really is. And like I said, a couple of hours from now. I won't think about this again. I was just yeah, I'll see it settled in. I'll be like, this is perfect, but she had a big breakfast. So I wanted to be doubly sure before we we address some, you know, put in solid.

Maia 10:37
Yeah. You know, what, the last time we spoke and you were talking about like, she just got done eating pancakes. I was so jealous.

I was like, I want pancakes to

Scott Benner 10:46
Donny, my, um, my speaking stuff is picking up now. I'm going going this weekend, two weekends after four weekends after that. So I haven't eaten more than like, I don't think 30 carbs in a day for like a week. Trying to get to that spot where I think to myself, Oh, I wouldn't mind looking at me for an hour.

Maia 11:07
Right? Summer is coming.

Scott Benner 11:10
Okay. Now the beautiful thing about me in this scenario is I have no memory of what we did. So I only have the feelings from it. Because I think that's just sort of how my brain works. So I could I might repeat something word for word. I may not.

Maia 11:25
I. Okay. I toyed

Scott Benner 11:26
with the idea of going back and listening to my side of the recording to hear what I said and wrote down my questions. And I thought that's just gonna sound rehearsed. And I don't want to do that, you know. So we'll dig back. And I apologize. And for everyone listening know this, Donnie goes deep. He remembers hard things in his life. And he talks about them honestly, and how I'm making them. I'm making him do it twice inside of a month. So it's okay. Just going above and beyond for us. Yeah.

Maia 11:55
I just spoke on Friday at a treatment center. So if you're good, I'm fresh,

Scott Benner 12:02
out of tears. Okay, I just started the beginning. Really? How old were you when you were diagnosed with type one.

Donny 12:11
I was 11 or 12 years old. I remember having a newspaper route and having a low and I knew something was way off. I'm like, I could just feel that I'm in trouble. went to the doctor. They couldn't they didn't really know anything wrong. And it was actually discovered by my eye doctor. My right eye was actually protruding much farther than my left. And at that time, they said that was a sign of diabetes. And they got me to an optometry up ophthalmologists.

Scott Benner 12:46
Well, that's a weird path, isn't it?

Maia 12:48
Yeah, totally. There's nothing. There's nothing normal about my life.

Scott Benner 12:53
To be honest with you, when we were done talking last time, I thought Donnie has a lot of stories. I don't have any of those stories that

Maia 13:00
I'm telling you. I feel like I can make a lifetime TV movie.

Scott Benner 13:04
Listen, we're about to do that. I think so. Um, so diagnosed at 11. And what was the what was like living with diabetes? like for you? 11 How old are you now?

Maia 13:15
I am 40 Okay, so

Scott Benner 13:16
that's not long ago. 29 years? Actually. Last time listening. Okay. Um, yeah, so 29 years ago, I'm guessing. Oh, tell me what the treatment was like back then for you like what your day to day is like,

Donny 13:31
ah, a lot of guessing a lot of panic. The influence I was using back then was the two hour quick acting, you know, you had to take your shot two hours before meal, pricking my finger. Back then I was calorie counting and basically following a little plate chart and like eat your fruit, eat your vegetables got a very I want to say not very scientific, but it was not very helpful by any means. I actually found a blood sugar log for when I was in the 11th grade. And like, holy, I didn't feel good. Like my sugars were all over the place. So I felt like there at that time in my life. And for probably most of my life up until the last two years, I didn't have very good knowledge or control of my diabetes.

Scott Benner 14:26
So that and we'll get to it, but you've you've lived the first 27 years with type one. Not like you've lived the last two Really?

Maia 14:35
No, no, not even close. All right.

Scott Benner 14:37
So this is where I think we have to just jump in here and to set the stage and say, you know, I'd like I'd like your remembrance of how how we met and I'll give you mine after

Donny 14:51
shores. So, um, well, like I had mentioned earlier I am in recovery and I had met you three months. And you know, life was going pretty good except for my diabetes. I reached out onto a Facebook group. And I pretty much was ready to relapse I had, I think my blood sugar was 400 I basically it was a cry for help that I posted. And I was like, I just don't want to do I feel like, you know, this isn't a lose lose situation. For me, I had no idea how much my diabetes was affecting my poor coping skills, which was drugs. So someone had responded with your name, and you had reached out and we had talked a little bit online. And then we actually ended up exchanging telephone numbers. And we had talked in person. And at that moment, when we had talked, I mean, it was pretty bad. It was not a good night, let's just put it that way. You know, at that point in my life, I knew drugs were not an option anymore. And I was worried that I was going to go farther than that. So again, and I know I tell you this all the time, Scott, I really appreciate you being in my life, you really helped turn me around and get me to the correct resources that I need to be able to handle this

Scott Benner 16:18
is my pleasure, that's plural. Yes. And by the way, there's a small percentage of the people listening who believe that I wiped out your recording, I made you do it again. So you'd have to say thank you twice. So um, so I just very interestingly, since we recorded the first time till now put out an episode that I recorded back around the time you and I spoke. And it was interesting, because I said to that person, I just had a conversation with someone privately. And I have to be honest with you. I wasn't sure if I should have the conversation when it while I was having it. And and so you know, Donnie describes, he's three months into recovery, things aren't going well, when he says he's thinking he might do something worse than drugs next time. I don't want to put words in your mouth, but you're thinking, what were what's next.

Maia 17:10
I thought I was going to commit suicide, okay.

Scott Benner 17:13
And so try to imagine that you meet a person on Facebook who's like, hey, I need help with my diabetes, and people say you can help. And then the person that gets on the phone with you is in recovery does not want to go back to drugs and doesn't think there's another way out of it. And now suddenly, you're having a conversation with that person. So from my perspective, the first 20 minutes or so, I just kind of let Donnie talk. Like I really like he was I described it, as I felt like I could feel you vibrating through the phone didn't mean like you were Yeah, phonetic. And, and we finally like I finally kind of let you talk yourself out a little bit. And I just said, look, I think we could get your blood sugar under control. And maybe that would help. And here's how. And then I don't know how much time we spend on the phone me talking about, you know, tug of wars and all that. All that stuff that I talked about about insulin. And I really believe it was the next morning that you sent me a note saying, like, look at my graph. And you had slept through the night maybe like that was the big deal, if I'm remembering right?

Maia 18:18
Is the first time I made it through the night without my sugar spiking or having to wake up at 3am and checking it. Yeah.

And just time in a very, very, very long time.

Scott Benner 18:27
If you can remember back what is like, Can you remember how that felt because you were elated when we spoke,

Donny 18:33
um, it felt like I actually had a chance of living. So I guess we can kind of just at that moment, go into it, because, you know, listening to it now I'm just like, God, I'm so pathetic. But you know what I was, I was in a really, really bad place in my life, which started this journey. So you know, Scott, if it's okay with you, I'm just gonna go to it. So you know, and I know and I always start this conversation with that keep that secret keeping sick, and I choose not to be sick anymore. I was molested from the seventh to 10th. And it was pretty traumatic. And I held on to that for most of my life. And then here I am at 11 years old and find out I have type one diabetes. So I'm already going into life not feeling equal to anyone else. And what I mean by that is like, if I was a football player, I felt like I was always standing around with the basketball players, you know what I'm saying? So let's add another traumatic experience on top of it. So I basically learned to handle myself through drugs. And what I mean by handle myself was I was able to get out of myself with drugs. And you know, God willing, in two weeks I will be 18 months clean. And that's a huge accomplishment for me because I have used since I was basically 15 years old. That's amazing.

Scott Benner 19:59
I when you You say that the first thing that pops into my mind is, imagine being molested. Not that you could even imagine it if you didn't, but something as traumatic as that happening to you from the age of seven till 10. And then it stops, mercifully. And then you get type one diabetes. Like, that's just, that's crazy. It's like, it's a lot. It's like being in a car accident, pulling yourself out of the wreckage and feeling like, I can't believe it. I'm not dead, and then another car coming by and hit me again. Exactly. But you know, just really crazy. Yeah. And so you use how, what? Where does? How does drug use start for a person that age? Like, where does it begin?

Donny 20:41
Um, I would say that it started recreationally with you know, some alcohol but I would never really wasn't drinker, thank God, my mother instilled that into my head that you never really drink alcohol and diabetes. So it started with, you know, marijuana, and then the disease progresses and things get harder and harder. So, I guess the direction I would want to say is, you know, when I was in college, I tore my Achilles tendon. And I just ended up having an endless supply of Percocet. So one of the things that came with the Percocet is people who wanted Percocet. So if you can kind of be in my shoes at the moment of never really feeling like I fit in never really feeling like I'm equal. I've now found a group of people that wanted me around, they want me around for me, they want to be around for my drugs. So that filled another void, you know what I'm saying? So like, it made me feel like a real person. And that also just created my addiction to go deeper and deeper. So the loneliness that I felt from being the lesson was very much intertwined with drug use. And that is something that I work on to this day.

Scott Benner 21:53
When you're finished listening to Donnie and I today, I hope you take a second to go to dexcom.com Ford slash juice box, and learn more about the Dexcom g six continuous glucose monitor. In a nutshell, a continuous glucose monitor is a device you wear that gives you the speed and direction and number that your blood sugar is constantly. So you can see your blood sugar in real time, how it's moving, and how fast it's moving. This is going to help you make way better decisions with your insulin. And the importance of that cannot be overstated. Once you can see how food and insulin impacts your blood sugar, you can begin to make decisions that are in your best interest in real time. Stopping those spikes catching lows before they happen. On top of all that, if you're the loved one or caregiver of someone who has type one diabetes, you have the ability to follow them, see their data when they're not with you. This could mean anything from a friend living across the country, to a child asleep down the hall. Anywhere that there's a internet connection, their phone takes their information, sends it up to the cloud comes back down to yours. You're going to get customized alerts and alarms for highs and lows that are going to tell you hey, now's the time to act. Let's do something here before something happens. It takes more to stop. These little adjustments are a huge deal. Trust me. If you don't know what I'm talking about, listen to the rest of the podcast episodes. And you'll figure it out. But for now dexcom.com forward slash juicebox it is imperative.

Donny 23:41
So basically, the last five years of my life has been the roughest. I had lost my mom to brain cancer. And I had found crystal meth. And someone had said to me, you know, uh, Hey, I know you're having a really hard time. You know, you should try the struggle to really get your mind off it and this and well, I got my mind off it. It took my mind away. Basically, it makes you crazy. I mean, it's so strong that I knew I was in trouble right away. But I also knew that I couldn't really handle my life at that moment. I was losing my mom, I lost my career. I really didn't have much at that moment. So does that

Scott Benner 24:27
circle just feed itself like so you described being around people and that feeling good? So you have a you have drugs in your life which bring other people in who want drugs, and now you have a circle of friends whether they really are or not, it's how it feels? Yeah. And so do you think the person who offers you the crystal the first time is trying to feed their circle by pulling you into their situation like is it is that the vibe like I need more people around me. I'll use the drugs to get more people around me or Does that make sense? Or am I make no,

Donny 25:02
it does make sense. But I think from my end, I was filling a circle. And I think from his end, he was filling a circle with his circles, not friendships, his circles trying to get someone else hooked and make money off of. So at that moment in my life, the circle that I had filled, who I thought were my friends, we're not friends. And I ended up going through a horrible identity theft, losing everything, because of these people. So here are the people that are controlling me for my mother's death, trying to be there for me realize they're emptying every everything I have in my pockets at the same time. So it was a very, very hard situation to go through.

Maia 25:44
And that is when I entered rehab the first time.

Scott Benner 25:47
Yeah, I wanna I want to say, because you're probably like, either cognitively or not cognitively. Avoiding saying some of the things you said the first time, but just so you realize when Danny's stuff was stolen from him, including his identity so badly that the government had to reissue him a new social security number. Yeah, this happened when he asked these people to dog sit for him. Am I right? While you were going were to my mom's funeral. Yeah. So that's stuck with me. From the last time like so you, there's no, you just have to try to imagine a person who would steal from you while you're at your mother's funeral. And that's and what the situation what their situation is to like, you know, we're talking about yours. But I think that there's a lot of I mean, I'm going to use Anne's word from a couple episodes ago, but I think there's a lot of grace you have to have for those people as well. Right? Like, everyone.

Maia 26:41
Ah, yes. But it took me a long time to get there.

Scott Benner 26:43
I would imagine Oh, in the moment, I wouldn't have it. I'm talking about listening to you now like that.

Donny 26:49
Well, like and I think the hard part was, you know, I didn't really find out that they were that this was happening until I after until I got out of treatment the first time. So it was kind of like a late onset effect with the fall. So, you know, here I am going into treatment for the first time. I wouldn't say I didn't think I had a drug problem. I definitely needed a break in life. So I didn't really know what I was getting myself into. I went on the recommendation of my family. And what I mean by that was I was I don't want to say force, but I was basically thrown into a rehab that I had no choice over. So like, when I say I didn't really know what I was getting myself into checking to rehab with 90 day supply of Xanax. I had no idea. So when I showed up, and they're like going through my bags, and I do my piss test, and they're like, you just custard ease. I was like, What do you mean up to sturdy? I haven't done that. And they're like, you just piss dirty for Xanax. And I was like, Well, of course I did. I'm nervous as hell. Here's my, here's my script. Here's my bottle. Yeah, I was like, like, What are you talking about? I was like, these are mine. It's okay. They have my name. I had no idea. So I actually got sent home. I wasn't allowed to check in. And I had to detox at home by myself for two weeks. And I had to buy a piss test on Amazon to prove to my dad that I was clean. So we can drive back down there because that was probably the hardest thing to to see my dad's face when I picked dirty and I couldn't get in. And I didn't do it on purpose. I was just trying to get through the day. You know what I mean?

Scott Benner 28:31
It's almost like the you know, at that certain time in the 90s. If you were a baseball player, you're like, I don't do steroids. I'm just using this. This powder that my trainer gave me.

Maia 28:40
Yeah, I'm not trying to get high. I'm just trying to keep my nerves calm. So I can be here to

Scott Benner 28:43
talk about that for a couple minutes. You described yourself early on as a nervous person is that lifelong? Is that after the molestation is that? Where does that?

Donny 28:52
You know, I think that was after the molestation. Because when I remember, like I was five or six. That was a really happy person I didn't really have. I was a very carefree I didn't really worry about things like that. So that definitely came from being molested. And that has carried me through most of my life. The last two years, things have been getting a lot better. But I Scott I didn't finish college the first time because I was too scared to go to finals. I was too scared to do reports in front of the class like I honestly, I think I dropped speech class five times, because I just couldn't do it. You think and now all I do is speak he can't give it a Shut up.

Scott Benner 29:30
Do you think that's in? Maybe a multiplication of your flight or fright response like flight 100. So, in your mind, someone's always about to do something bad to you.

Maia 29:45
Yeah, that's pretty much how I lived my life. What does this person want for me and hopefully they won't hurt me as bad as I've already been hurt.

Scott Benner 29:52
Wow. Well, Donnie, hold on a second. That's just gonna pull myself together here. That's hard to think about. I want to just take a half a second here. Not something you could have stopped. It's not like your parents were not paying attention to you. This is a predatory situation. Correct? Yeah. Okay.

Maia 30:14
You said

Scott Benner 30:16
before that you can spot people like that now?

Maia 30:20
Yes. So I think,

Donny 30:23
I don't know. It's just a gut instinct, I have taught children most of my life. And unfortunately, when there are children around, there are usually predators around and I can spot them I can spot I have a really good intuition, I can tell when people have malicious intent. And when I have been around other coaches that have the wrong intent, I can usually tell

Scott Benner 30:45
and it's little stuff, right? Like, it's a teacher who calls you cutie, or it's something like Why?

Maia 30:52
Why are you giving a kid a juice box, and she doesn't have diabetes?

Scott Benner 30:56
You know, I'm saying things like that. Just trying to keep them kind of connected to you a little close by like building these weird relationships. Maybe they'll never, maybe they will. Or maybe they won't ever do anything. But they're trying to put themselves in a space around this child that they're,

Maia 31:10
they're a good person.

Scott Benner 31:12
Yeah. And so that maybe that kid becomes comfortable. And then there's a moment when they can,

Maia 31:17
and they let their guard down. You

Scott Benner 31:18
know, it's funny, I used to my, when I was younger, and think of this last time we spoke, but when I tried to make a point about people, when I was younger, I used to say go to the mall. Statistically, there's a child molester. They're like, like, right? Like, they're, they're just statistically there's this many people who blah, blah, blah, there's this like, it's just when whenever you get a group of people together, it's big enough, you've you're gonna get a sample size of a lot of things. And and some of those things are our behaviors that most of us can't believe even exist. Right? Like, it's Yeah, that's why it's so frightening, utterly shocking, because you're just like, why no one would do that. I would never do that. No one would do that. But

Maia 31:58
it's not true. So there's a lot of people out there that will Yeah.

Scott Benner 32:03
So do you, we You said you ended up working with kids for a while. Was that? How long did you do that for?

Donny 32:13
I have been a gymnastics coach for most of my life. I started gymnastics around the age of 1213, right around the time of diabetes. And I think that was like my escape. I really, really, it was really my first addiction. I completely could get out of myself. When I was in gymnastics, I could completely just get lost in that world. And I never really left it. So yeah, I've been I've been coaching for since I was probably 1617 years old. And I still do it to this day, part time.

Scott Benner 32:51
And you're really sick. You're very like you successful right? Like this was a good time of your life. This.

Donny 32:56
Yeah. I don't like to toot my own horn. But yes, I I did very, very well. I've had probably over 80 kids get full rides to college. I have put kids on the national team for USA Gymnastics, and I've won every level in USA Gymnastics. You high that whole time. No, no, you know, and that was the weird thing, because that's what's the part that I thought I never really had a problem because I was such a codependent, I would get lost in my sport, it was my drug. You know what I'm saying? I would completely be involved 24 seven, doing lesson plans, coaching extra hours working seven days a week that I would completely get lost in it. I remember the first time in college, maybe a little bit older than college age. But I was working for a gym, that ended up giving us a break for Thanksgiving, like a five, six day break, which is unheard of in gymnastics, especially when you're good at gymnastics, you just don't take breaks. And I remember not being able to handle myself and like that's when the drugs were very, very bad. And I was shocked. I hate the word shocked. But like I was like, some of the behaviors that I was doing. I ended up in a different state. High, you know what I mean? Like just really optimal behaviors because they, I had a hard time sitting with myself.

Scott Benner 34:18
Yeah, I you know, it's funny, I was talking to someone the other day, it feels disconnected from this, but I don't think it is. And they were telling me how their relationship is good when they and their partner have someone else to be angry at at the same time. So when there's a third party messing with them, they can kind of come together as a as a team and be angry at this third party person. But if there's no one to be angry with, if there's no drama moving around in their life, they turn it on each other. And, and I wonder like, how much of that is just that they have something else to focus on at the time? Yeah, I mean, because gymnastics. I mean, that's obviously you're, you're in your own head. But you're so I'm imagining focused on something that you can't think of anything except what you're doing.

Donny 35:09
Yes. Right. And then when I don't have to worry when I don't have to sit there and think and feel about myself, yeah, I was okay. Well, that's a lot of years of stuffing things down a lot of years. So and it like, I kind of look at it, like if I lived in two different worlds. And it took me a very long time and a lot of therapy to combine these two worlds together. Because like, when I was in my one world, in my career, I was completely fine. And what I wasn't, is when life was a disaster. I really didn't have my family because they didn't know me. I didn't know me, I didn't want them to know the me that I knew. You know, so I was very good at hiding. It was very good at living that double life. And I'm pretty good manipulator, I can hide things from people and I can make things look good on the outside. So they're not,

Scott Benner 35:55
I wonder what it's like. And if you can explain, when the focus, the ability to focus on something goes away when you are with yourself? Is it? Are they actual conscious thoughts that creep in? Is it? Are they feelings? Like what? What drives you to? To use them like? Yeah, like, I don't understand that part, I guess.

Donny 36:17
So I think it would be the uncomfortability and the unmanageability. And then if you want to add the mental illness on top of it, it's the insanity. So it's the all spinning of the negative thoughts that won't stop. It's the obsessiveness is the compulsiveness that you have nothing to do you know, I can't I'm not working right now. So what am I going to do? You know, it's almost, I don't want to say keeping yourself busy, but it's keeping yourself out of yourself. It's almost

Scott Benner 36:41
like white noise. Say the monitor, like white noise like you create white noise. So you can't

Maia 36:46
Oh, yeah. Oh, yeah. Hundred percent. When you

Scott Benner 36:49
say that, like, your thoughts? Like, are they? Are they words that you hear in your head? Like, I don't mean like, you know what I mean? I don't mean like, somebody's talking to you. I mean, like, do you actually feel complete thoughts? Like, I used to be molested? I did this like, does that stuff? Or is it just is it hard to put into words that feeling? And so no,

Donny 37:10
I would think it so it is words, and I'm hearing my own voice, but sometimes they are. The voice is a manifestation from a feeling or a problem. I can give you an example. And this is kind of like in a random example, but I Okay, so I'm going to go out. We're going to go out with friends and I'm nervous. Do I wear a blue shirt? Do I wear a red shirt to this shirt fit? Oh my God, this looks stupid on me. I can't look in the mirror because I don't like looking at myself or the shirt work. So I asked a friend is this red shirt looks nice. Yes. That's what extra gas? Yes. Okay, so obviously, I like red. Okay, everyone told me that I look good in this red shirts and red left to be my favorite color. I get to the bar. Someone says, Oh, God, I really don't like that color. And then your brain just spin, spin out of control. It's really, really odd to say, but it's it's kind of like that. It's like you would heat you would question yourself so many times that once someone said something, and it would amplify in your head?

Scott Benner 38:12
Is that confidence? Is that a lack of confidence?

Maia 38:15
I think that is a lack of acceptance.

Scott Benner 38:21
Also,

Donny 38:23
I think when someone hurts you, and the way I was hurt, it takes away the ability to accept who you are, and allow yourself to be equal to others. So it takes away your ability to have your own thoughts, your own pride. And I guess you could say confidence, but almost like it takes away your leg to stand on.

Scott Benner 38:47
So when that secondary person comes in, in that bar situation and says I don't like you in that color. You You are without a next step. be correct, right. Okay, because you don't know what you like, you don't know what you think you look good in, and you're completely being, I guess, to some degree that your thoughts are manipulated by other people's opinions. So and those are ever changing, and there's no way for you to even prepare for that. It's really interesting and scary. Well, geez, oh my gosh. All right, Donnie. Let's dig a little farther showery.

Maia 39:23
Sure.

Scott Benner 39:26
You know what, I don't have a cute way to get to this. How long have you known you were gay. If you're using an insulin pump now with tubing and you'd like to be tubeless if you're using pens and you've always wanted to use a pump, you can check out the Omni pod tubeless insulin pump without any obligation or cost. All you have to do is go to my Omni pod.com Ford slash juice box there's even a link to click on you don't even have to remember that. When you get there you'll fill out the tiniest bit of information and on the pod is going to send you an absolutely free, no obligation demo of their pod in the mail right to you, wherever you are, I guess wherever you say you are. once it arrives, you can actually try it on and wear it. Find a site that you think's right for you shower with it go about your business. And you'll notice I think in no time at all, that you forget the pods there. And that's when you're going to realize I could have my insulin with me like this boluses and Basal changes at a push of a button. Completely untethered, nothing touching it that button I'm talking about you pushing to one another small device that you keep in your pocket or your purse does not have to be on you hanging all over the place. You only need it when you need it. Imagine just taking something out of your pocket in a restaurant. It looks like a phone. Nobody knows what it is. Push, push, push. Back in your pocket. Here comes your pencil. It's pretty damn terrific. Arden's been using the Omni pod since she was four years old, and she's worn one every day since then she's over 15. Now, I think it is an absolute treasure. I think you would like it as well. I know it might seem scary to try something new or to make a switch, but you can do it. And on the pod will make it easier for you. My Omni pod.com forward slash juice box with the links in your show notes. We're at Juicebox podcast.com. How long have you known you were gay?

Donny 41:28
I would say since I was like five years old. I remember. You know you get to Sunday newspapers and like he gets like the the Kmart ads or like the cold ads and you're flipping through them and you would see the underwear ads. And I do I was very much attracted to men. I wouldn't say I knew that I was gay. But I knew I was different. Okay.

Scott Benner 41:47
Yeah, I guess there's no context for sexuality when you're five?

Maia 41:50
No, because I don't think I don't think you could label it at that age. But you knew you knew and I knew that was different. And I also think that's what what these people preyed on.

Scott Benner 42:01
Okay, so you think that there's some sort of a, I don't want to call this

Maia 42:07
a level of uncomfortability? within yourself? Okay, so and they prayed on it. Ah, okay.

Scott Benner 42:12
So again, so you have this? Oh, it's interesting. Isn't it like so? Being understanding that you're gay before you understand? sexuality? Just makes you feel? unsettled? different, different? Yeah. And then that's a feeling you give off and other people can pick up on that?

Donny 42:31
Sure. Think about the shy people in class, why are they picked on because they don't have the confidence, they feel different than someone else's people choose. Instead of accepting it, they try to manipulate it terrorized it. And that's what bullying is all about is not allowing people to be who they are and accepting that, like when when, you know, think about it, like you got someone who, you know, kind of doesn't hold their head up. Not real confident with themselves, you can tell that they're not talking, you know, they don't have very many friends. And then he goes and take shots before he, you know, there's a lot of things right there that people just want to pounce on.

Scott Benner 43:09
Right. So you're in a, you're in a deep enough hole that you don't appear to be the kind of person who would stick up for themselves. If I tried to pressure you into something. Or if I picked on you, I don't think you'd swing back at me or something like that. Correct. Did you know that about yourself? Did that feel weak?

Maia 43:27
You know what I think I've always known that. I'm not a violent person. I'm the one fight that I have been in was so bad that the personal I almost I don't want to go there. But I know that my anger will lead to some heavy violence. So I have to walk away.

Scott Benner 43:44
Yeah, Tony, I don't have context for your height. But you're a big strong person.

Maia 43:49
Yeah, I'm a big boy. I'm 511 to 25.

Scott Benner 43:52
You I, you are one of those people who I look at and I think if Donnie decided he wanted to break me in half. He absolutely could.

Maia 44:00
But I am very gentle. Jerry.

Scott Benner 44:04
All right. You can't use this podcast as a dating tool, Donnie slow down. No, no, I 100% know that about you from speaking to you. And from you know, in the times we have that I don't think you'd heard a fly. But you're saying that there could there. There was one time and you are aware that it could have been again that if you head down that road, there might be no stopping you're going down that road?

Maia 44:28
Yes. Yeah. Yeah. Okay. All right. Now,

Scott Benner 44:37
Jesus, I don't know where to go man. Your life is that you know what, excuse me. Your life prior to your recovery is just an like, anything that I can imagine working out. Like it just seems like there's too many cards stacked up against you. But somehow that is not how it ended up for you. It's no everything, didn't you?

Donny 45:06
You know, I think looking back at it all, there was definitely something that was always protected me, and I don't know what your religious beliefs are. And I'm not one to impose mine on anyone, but there's definitely something out there. Other than me, I'm not in charge, there's the universe or God or whatever you want to call them a law on Tuesdays, whatever, it doesn't matter. But there was something that was always protecting me. So here I am, I've always known I was a good person. And I've always known that I had a lot going against me a lot. And here I am a hurt kid who's always protected kids, and did it well. And like when I say I did it, well, Scott, like, I'm not bragging about my accomplishments in my career. Like, I still get Father's Day calls from kids that I coach 25 years ago, you know, I got invited to a graduation ceremony at the University of Oklahoma, because one of my athletes was speaking and she thanked me in her commencement speech, you know, little things like that is what

Maia 46:04
I, those are my gold medals, you know what I'm saying?

Donny 46:08
So, I've always known that I was a good person, but man, I just couldn't get unstuck in life, you know. And it was the drugs, it was holding me back. It was, it was not allowing me to deal with things. It wasn't allowing me to cope with things. It wasn't allowing me to accept things. You know, and I think the big turning point for me was when I went into rehab the first time and it was long term treatment, I was supposed to, supposed to say, three months, but I stayed two months in 28 days. And while I was there, which was the first time that I've ever gone, a substantial amount of time without using any substances, is when I really uncovered I don't want to say uncovered because I've always known but really remembered that I was molested. And I remember the acts, and I remembered who they were. And I would remember their grooming techniques and the presence they would give my family and, you know, the threats they would give me if I spoke up. And I went back to using because I was like, how in the world? Am I supposed to handle this? You know, at that point in time, I think everything got worse for the right reasons. You know, this is when I found out that my identity was stolen. So here I am. jobless, homeless, living with my family. I wasn't really homeless, but I was not living on my own. And I've been living on my own for a very long time. I had no money. And I know I didn't tell you this first time. But this is also when I was losing my eyesight. I had cataracts in my eyes. my driver's license was taken away. I had lost my driver's license when I went to the DMV and to take the vision test, and I couldn't see the the little pictures. So yeah, no, no, like, I couldn't do anything. Like I was seriously like, my, my universe was saying you're gonna learn to sit and get better. And I had relapsed. And when I say relapsed, I mean, you know, I would say, we were, I guess he can't even say it was really relapsed, I just, I used again, but this time when I used to turn my phone off, and I kind of disappeared. And I didn't have my influence with me, and I didn't care. So that's why I call it a relapse, because this is like, I've now gotten deeper into that negative space. You know what I'm saying? So, from that act, I had found a trauma therapist in my town. I knew how bad it was. And I was like, This is not good. You know, I was like, Oh, well, you know, us. And other than I was like, Oh, no, you have no idea where I went my head. So I knew I needed a therapist, because we had been doing therapy in rehab, and it was working.

Scott Benner 49:02
And it helped me should say, your question before we get to the therapy. Yeah. And just very quickly, it might be my imagination. Is it possible you're moving a piece of paper or doing something with your hands? Yes. Can you Sorry, I'm nervous. No, no, don't Yep. Sorry. I'm sorry. Sit on your hands for me. Okay. No, no, don't be sorry. So my question here is, what does it What does your What does your management for your diabetes look like throughout this entirety of time? So, you know, are you concerned about it? Or are you just giving yourself enough insulin to stay alive? Like, what was it cognitive? Did you just give yourself insulin when you thought about it, like, how did you manage? And I mean, like, through the decades, like, what was your process?

Maia 49:49
So?

Donny 49:52
Well, I wouldn't say it was good, but I wouldn't say I wouldn't neglect it. I would definitely like to know at that time, I was taking lanta so I had the 20 Are insulin and I was taking whatever log at the time human log novolog. I can't really remember what I was taking. But I had my short acting my long I would always take them. But I didn't really care. Because once I hate fat like this, but like I would prick my finger, the number would be guy rocket, I would take the amount of influence I think I should take, and then I would get high. And then if I wasn't getting high, I would go to work. So again, I would deal with it for that 30 seconds, I would allow myself to be me. And I would go and escape. He does your work or do it through other unhealthy coping.

Scott Benner 50:40
I think you just said something that I've seen a number of times with people who are in that scenario and just really aren't worried about their, their blood sugar, their health, their diabetes, health. The idea of I'm using my slow acting insulin, so at least I have that I've heard so many people say that.

Donny 50:59
And like not to interrupt you. But like at this point, like here, I've already been molested. My life's in shambles. I'm hiding in a career that I did love, but I was basically killing myself with.

Maia 51:15
I just figured at that point. And I hate

Donny 51:18
my truth. I wasn't going to live past the age of 40. Because I figured once I lost my legs, I was going to kill myself. And I didn't think that was going to be long, very far away. I honestly thought I'd be done by 40. So the

Scott Benner 51:33
idea was, I'll manage this well enough to keep me going at some point that diabetes will catch up to me something horrific is gonna happen to me. And that's when I'll end my life.

Maia 51:41
Sure why not everything else is happening to me.

Scott Benner 51:44
Well, there's at no point during decades of your life, Did anything happen that would make you feel like hey, maybe this will get better or Mito, maybe there's a way to make it better there was there's just nothing existed for you like that. And that's, it's so interesting. Like to sort of start for a second and recap. You have something terrible happened to you as a child that puts you in a psychological tailspin that you can't break free of, you know, the explanations of how it happened are horrific. But the fact is that it happened and now you're having that those feelings, then you get diabetes. Now these things are compounded upon themselves. And then tell us again, what age did you start using? a 14 or 15? So you made it from two years? Yeah, you made it a year from molestation to diabetes, then you made it two years from diabetes and your memories to using I guess that's about when you probably just couldn't handle it anymore. The the ideas of what happened yourself? And was anyone managing with you when you were 1112 1314? redoing it on your own? What was that, like?

Donny 52:50
Um, I was mostly doing it on my own, my mom tried to help. I remember going to the diabetes educator, and sitting there for like, seven hours because like, I wouldn't take a shot. And every time they was able to take the shot, I'd break it. So I probably broke like over 400 syringes that day, and I just remember seeing my mom crying and was like, please do this. So I did it. I've always been a mama's boy. But no one has ever given me a shot. I've always done it myself. Um, so and, and nothing was ever really managed, like I started with like a regular, like general practitioner doctor who didn't really know what they were doing. You know, back then the technology really wasn't there. But I don't think I've ever had an agency that was in the eighth. Like, not until the last two years of my life. I was always in the ninth or 10th.

Maia 53:44
Yeah, yeah,

Scott Benner 53:46
I am. I don't have a follow up question for this. But at what point do your parents become knowledgeable about the molestation? How old are you? And they know.

Maia 53:58
That's hard, because they always knew.

That's the part where it gets tricky, because when I was in rehab, and my therapist had called them down to talk about what I discovered. And when we had talked about it, the look on their face. And their response about them knowing is what pushed me back out. So

you know, it's hard.

My family loves me the way they know how. And I have accepted the fact that what I need from people in my life, I have to go out and find the right people to do that with.

And I say that as a disclaimer from my own head.

Donny 54:48
But I guess, you know, it is what it is. We're very Catholic family Catholic guilt sweeping under the rug, don't talk about it, you know, and it's always been that way and it still is to this day.

Scott Benner 55:00
That's more to deal with than anybody. I mean, taking out what happened, just the idea that something was happening to you, that your parents could have rescued you from and didn't, I don't, that's a lot to deal with. That's just that's a massive amount of, of knowledge for for a person that has, I think

Maia 55:19
the hard part was, I didn't really remember it until I was 36 years old.

Scott Benner 55:23
Yeah, that's something. All right. So you were.

Maia 55:28
So let's get to the good stuff.

Scott Benner 55:31
For everybody listening comes up with their suicide plan.

Maia 55:35
So, you know, I had found this amazing trauma therapist. So we worked for about three years. And this was about the time that I got on the Dexcom and the Omni pod,

which have been life changing for me.

Donny 55:54
So we would have therapy, that I that I, I would relapse every once in a while. And, you know, she had came to me one day, and she said that, you know, hey, I think we're gonna have to stop. And I was like, What? I was like, No, I'm paying you a lot of money. Like, this is the only thing I look forward to on a daily basis, or weekly basis. Fly, I was going like everyday I see was like, Well, every time we dig, you relapse, and she's like, and I know they're getting worse. And that was true, it was getting very bad. And she said, I need you to go 30 days without using. And I said, I'll give you 15. And it was probably about day six, I woke up in the middle of the night, early morning, in a complete panic. I emailed her and said, I need an emergency appointment. Because you know, I'm so important. Like, I need to be the first first first quarter of the day. And I got down there. And I told her that I had been lying this whole time. When she said about what I said I never really was molested by the neighbors. I molested them. And she said, explain. And I said, Well, I really enjoyed it. I was seeking sex with them. And she said, You have coached children your whole entire life. How many kids do you know from the ages of seven to 10 are sexually active. And I said none. And she said this is your brain trying to protect you. And when she had said that, is when everything came back, I can hear your voice. I can remember the accent. Remember the time of day, I can remember my responses. I remember the fear of responding. I could remember looking out the window and seeing my family from their house while this was happening. And I was free of addiction. I had put it together that I was hurting myself because someone else had hurt me. And that basically has been what has been the the fuel to my addiction, you know, you're not going to hurt me, I'm going to hurt me. I'm going to hurt me, I'm going to hurt with my diabetes, I'm going to hurt it with drug use, I'm going to hurt it with putting bad people in my life. Like no one else was going to hurt me more than I've already been first. And the only power I had your right. And at that moment, I was completely free of addiction. I was like I would never have to pick up a drug ever again. And I felt that I need that I could like it almost felt like the weight of armor had been lifted, that I've been carrying for 37 years of my life. And unfortunately, at that time in my life. When this was happening, I had no coping skills. I had nothing. I had lost everything. I lost my mother, I couldn't go and cry on her shoulder. I lost my career, I had nothing to hide in. I didn't want to use drugs. And I didn't really have the support system that I needed. So I wanted to kill myself. And that at that time was what I realized I was like whoever is running this world, this ship, you know God, Allah, Buddha, the universe is evil. Because How could you do this to me? How could you finally make me remember? or allow me to remember? And now I'm hurting even more. So I checked myself into the hospital and told them what was going on. And they asked me, Well, what can we do to help you? And I said, Well, I'm trying to get into a rehab in Arizona, I was just running alone isn't really gonna go. I was just probably gonna get a plane ticket and just stay out there ended.

Maia 59:34
But they have gotten me into treatment and

it worked

Scott Benner 59:38
with the therapist. She saves you really because because by sending you a way to clean up, right for long enough that your brain came up with another way out of dealing with your thoughts like taking responsibility for being less that was your brains way of like, I don't want to think about these things. Why don't they make them not even a bad thing anymore. And then maybe I can exist through that way then she calls you on it. That's like your whole life right there. Like that's where you're that's that should be your birthday whenever that was. Yeah, like that's beautiful. So oh my gosh, you must send her a lovely holiday card.

Maia 1:00:15
Oh, I still see her. Here. I'm still, y'all. Yeah. She's, I wouldn't be here without her. No kidding.

Scott Benner 1:00:21
No, that's it's a beautiful that really is. It's somebody who knew what they were doing and did it well, and and it pays you back. Like, that's, that's terrific. So. So then you go into How long ago? Was that that moment?

Maia 1:00:36
Ah, it'll be one two years, August 28. So I'm almost at 18 months. Okay.

Scott Benner 1:00:45
So when you when you're the process of getting clean, I can't imagine must be pretty terrible on your body and your mind, right? Like

Unknown Speaker 1:00:54
not using Oh, it wasn't easy.

Maia 1:00:59
Yeah, no, it was tough.

Donny 1:01:03
So it took a while for my body, obviously, to get regulated again. But I think my mind is what's more important, because that's what control of everything. And there was a couple key things that really, that helped me get to the point where I'm at today. First and foremost, I had to forgive the first thing at first person, I had to forgive myself, I had to forgive myself for doing the drugs. And then I had to forgive the act of what those people had done to me. And then I had to accept the fact that this was real.

Maia 1:01:35
And then I had to be okay with it.

Donny 1:01:38
When I think about that, I try to think of those words on a daily basis. Because they're, it's my world, you know, it's, it's my truth. You know, when I forget that I did drugs for over 30 years, that's when life's gonna get bad for me, you know what I'm saying? When I put my recovery first and allow myself to live my world, through my recovery, everything's okay. Because if I forget that I have the tendency to hurt myself. But here's the thing with addiction, addiction, math, self destruction and self care. And vice versa. You know, I wasn't doing the drugs to get high, I was doing the drugs to survive, I was doing the drugs so I can get out of the houses during the drug. So I could do a podcast so I can get to class. So I could go out and pretend to being social and be okay with the red shirt when I'm really not okay with the red shirt. So I don't really like these people, and they don't like me, and I'm forcing myself to be with people that I think I want to be around. So they don't know me, you know what I'm saying? So that felt like self care when it was really self destruction. So I can't let that be anywhere on the back burner. I have to remember that my way is not the best way. You know,

Scott Benner 1:02:54
have you been able to successfully keep your type one management now that it's incredibly better? Have you been able to keep that from becoming an addiction? Because that would be bad for you? If that happened? Is that right? It would seem like a good thing. But it would be terrible.

Donny 1:03:08
Yeah. Um, so you know, and I think when we met, what the problem was, was, here I am with the problem that's always been there without a solution. You know, my solution was to ignore and get high. Why choose not to do that. So here I am facing a 400 blood sugar. What I haven't eaten all day, you know, and why and I can't fix it. And that's when I reached out and I found you. And then that led me to Genet integrated diabetes, who taught me how to live. Here's the thing. I've had diabetes for 29 years, I don't know how to live with it. No one ever really explained it to me. Like the part that really shocked me was, you know, at that I'm still on the Omni pod. But like when I said to Jenny, I was like, man, I just I hit like a 400. Every time I switch my pump, and she was like, yeah, you know, anyone struggles with a pump switch, you got to you got to do the tricks. And I'm like, there's tricks. And I remember specifically calling my endocrinologist at that time, a year, maybe two years before that thing. You know what, I can't get this to work. Like it takes a day for it to calm back down. And his response was, well, how long is it taking you to switch a pump? And I could, I could change a pump like a NASCAR. You know what I'm saying? Like, I could do it. I could do it driving if I had to. And like, here I am. Asking for help, which I think I'm asking for help. Because here's here's the other key piece is when you're molested, you can't say no, you don't know how to say no, you don't know how to ask questions correctly. At the time of my molestation, my communication process was interrupted. I actually did a year's worth of learning how to communicate with a therapist with other people because I wouldn't get my words out. I'm the guy that's like lit on fire. And I would say I think I need a glass of water thing. Saying I need help is a very difficult thing for me. So you know, it was wonderful having Jenny by my side, teaching me How to limit diabetes because I was dying with it.

Scott Benner 1:05:03
You know, it's interesting. On my side, there's this unspoken thing because Jenny obviously is a is a healthcare professional. And I'm aware that you see her. And she's aware that you came to her through me, but we can't talk about you. But we're both really happy for you. But we can't, but we can't conversate about it. It's very interesting. Yeah. So she's terrific. Obviously. He's amazing. I'm thrilled that you found her too. I really am. You know, what? Do you think you could tell me a little bit about recovery now, like, so I guess, you were when you when you and I spoke, you were in that kind of spinning out of control phase, where you thought things were gonna go very poorly. And now your diabetes? Would you call it? Like, what? How do you I guess, what are your goals for for diabetes day to day? What do you try to accomplish every day?

Donny 1:06:01
I try to accomplish knowing why my blood sugar is the way it is. I think that's what has always been the issue with me like not understanding the timing of food, how to count carbs correctly, not knowing that if you eat too much protein, it's going to have a counteraction. And you're going to have to extend your insulin for that, like, I couldn't stand that not knowing why I have 300. You know what I mean? So I try to always know, I'm checking right now someone else's. You know, I like to know, why is why am I 106? Well, I, you know, it's 333. But I'm at the end of the meal. So I'm just running straight on bazel right now, you know, not knowing is the hardest part, I think what recovery has taught me is not to stay stuck on the whys, and how to really focus on the how well how am I going to get the information to know why I'm 106. You know, so I had to seek help. I think recovery has helped me accept the fact that with my diabetes, it's not going to be through failing every day, there are going to be days that are going to be difficult when I'm sick, or when I'm stressed or, you know, candy, like kicks out, when you start 40 units in and you can't switch one and you know, you're gonna have to dump some extra insulin on there, you're gonna have to take a shot. I think I always wanted, you know, story of my life, I wanted my problems to go away, I wanted them to not exist. recovery has helped me accept my diabetes for what it is. And it's allowed me to find the solution.

Scott Benner 1:07:35
You know, it's funny, you just said something that made me realize that that I mean, I don't know that it's going to be much of a shock to anybody. This podcast is not very well thought out. I don't sit down with like, pages of notes. When Jenny and I talk about management stuff, I heard somebody the other day, say that the pro tip series in the podcast should be everyone should have to listen to that. And if I told you, Jenny, and I would sit down, and I'd be like, hey, let's talk about Pre-Bolus thing today. And that was the extent of our preparation. So I'm not, I'm not a prepper. Okay. And at the same time, I remember saying one time, when your blood sugar gets high, you can't spend a bunch of time worrying about why, because there are too many variables, you're never going to figure it out. Like to just deal with it, get your blood sugar down and start over. Like, I think that a lot of diabetes management. Maybe I haven't ever said this, but I think a lot about diabetes management is just starting clean, just that sometimes things get completely up, and you just have to start over again. And I yeah, you know, and and then when it goes wrong, if you spend all that time running around, just like I don't know what happened, like I'm high, I don't know why I don't know what I did, I ate here and you don't realize you're going through all these things that happened to you. You've never been instructed well on how to do any of these things. But yet, you're looking at the time you ate and the insulin you used as if they correlate to success or failure when they don't, because they're all wrong. It's just it's you're not no one taught you how to do it correctly. And now here you are taking these things that somebody you know, quote unquote, taught you, they lead you to these bad outcomes. And you keep going back to the broken tools that you think well, why didn't this work? It didn't work because you're not doing any of it. Right? Moreover, you don't know what right is. And and so you make yourself crazy. Like, it really is terrible the amount of people I see who just, you know, they're twisted in a knot, trying to figure this thing out and they don't have they don't have any of the puzzle pieces. They've none of them. All they have is the problem. It's um, it's really it's a it's an invaluable piece of advice. You said it about a completely different thing. But you just can't spend a ton of time worrying about why sometimes just kind of,

Donny 1:09:51
but how but like, how do you not when your end results. You know, what's the biggest fears that you're going to lose your eyesight or you're going to lose your legs? So you sit there and you panic. And like, it's just crazy to be the amount of bedside manner that really needs to be addressed with endocrinology. You know, at the time when I met Jenny, I guess I'd say about a year, I'm not really good with the time, you know, I got so much knowledge from four months like my agency went from, I think, when I met, when I met you, I was in the nine when I got to Jenny, I want to say was eight, five, and that was basically through starvation. I'm sitting at a seven, one or seven for right now. And like four months of knowledge, Now, don't get me wrong. It took me a while to be able to implement that four months of knowledge. You know what I'm saying? Like, it wasn't a quick fix. But like, I was like, I go to the endocrinologist, every three months, I used to hate going to the endocrinologist, it was the worst doctor's visit, ever, because you just feel like you're being punished. Like you're being told you're doing it wrong and doing it wrong. We never getting those how to do it, right. And, yes, I think if I could piece everything together, and like, look at it from the gratitude side, like if I didn't have that moment, and never reached out to you, I never would have found Jenny, which gets me to be able to sit here and talk about a very uncomfortable thing that's being recorded, and my blood sugar staying stable.

Scott Benner 1:11:20
Yeah, that's like, that's pretty. That's amazing. So wonderful testament to where you are. It just Yeah, it really is. I you know, it's funny, you said it took a while to implement it. And I'm looking at my daughter's friend, her 24 hour graph right now. So I've been helping her for a couple of weeks. I don't really talk to her much anymore. She's, but she's 15. And if you could see how quickly she put it into practice. It's fascinating. And so the key is, of course, the way n does talk to people, but also, but not making them wait, because your anxiety has built and built and built around this for so long. This girl's only had diabetes a handful of years. And when I got her first graph, she was over 400, twice a day, every day, for a total of eight hours.

Maia 1:12:09
And I am looking at you don't feel real pretty at that.

Scott Benner 1:12:11
No, no, no, but she didn't know it. And I'm looking at her 24 hour graph right now. And with the exception of three lows of like 65, which we could argue as to whether or not how low that is. She's been over 110 twice, and mainly between 80 and 100 for the last 24 hours.

Maia 1:12:31
That's amazing. But it's just how quickly she picked

Scott Benner 1:12:33
it up is it I'm, every time I talked to her I'm fascinated by it. And I I'll say to her, Hey, your blood sugar's 130. Give yourself point, one, five. And I just want you to look back every once in a while over the next two hours just to see how it works. And then she watched and I'm like, Hey, you know, I'll say throw time based on watch what happens do this, and she learns it right away, and then immediately puts it into practice. And she said, it's, it's getting easier every day. Like it's gonna be effortless for her in no time at all. Like we do people a disservice by not explaining it to them early on, they really deserve to know how to use their insulin right away. You know?

Donny 1:13:11
Yeah, good, cuz it's your life. You know, it's, I think the cool part, what I learned with Jenny was, and I and I took I take really good notes. I was really if you I know, you can't talk to me. But like I was really gung ho for this, I actually had to, like, put a good amount of time and effort into collecting the amount of money to pay for her services, because I wasn't working at the time. And my god, it was the best gift I could have ever given myself. You know what I'm saying? Like, I wanted it so bad. And to sit there and I was like, learning all this information. And like my pump settings was way off. Like, I don't even want to come through, like, I'm way off. And like, so she got everything on track. And then there was like, right at the end of the four months, I was down at the beach with my family and like things started shifting. And I use the word shifting because I heard her talk about that. Because it's not a problem. It's a shift, you know, but at this moment, it's a problem. Like, Oh, no, I'm 100 again. And then she's like, I read that and she's like, Listen, you're on vacation, different food, different time that a better dinner, like, Oh, we talked about this. Yeah, you know what I mean? And then it was like, Wait a second, I have these tools. I have the tools to understand that today. I'm going to go to Temp Basal because something's off. I don't need to be stuck on the why, but I have the how. And like that's the cool part is like I I don't want to use the word control. But I know how to control where I want my sugar to go. And maybe not can control where it's going. Because I'm a very nervous person, like I'm very high energy and stress gets me so sometimes I can't even like calm myself down. But I know how to I know how to I know how to find the solution to influence. And that's amazing because like I didn't like it. even know what Temp Basal was into I met Jenny and I've had the pump for probably three years at that point. Yeah,

Scott Benner 1:15:05
that's crazy. Well, the pump companies are in a weird disadvantage to they're allowed by the FDA to sell you the pump, they are not allowed by the FDA to tell you how the pump works. They can tell you what it does, but they can't tell you why you might use it

Maia 1:15:18
that way. It's now that I understand how to use the data with a dexcom and an omni pod. Like, I just feel so empowered. Like, life is so good.

Scott Benner 1:15:29
That's wonderful. I love hearing. It's funny. I love hearing, like how you have like, come along so quickly. And that you that you hung in for so long. I don't know if you ever give yourself that kind of credit. Like, you know, you, you said something about, you know, a divinity keeping you here, but there's something incredibly strong about you, you know, they kept you they kept you in the game long enough.

Donny 1:15:53
I'm starting to feel that, you know, it's hard because I've never been a person that brags or boasts you know, if you if you're going to put it on like an ego scale, I was never one. On the end of the bragging, I have it all but I was on that same scale, just the other end, I'm not good enough. I'm not wanted enough. I can't do this, which is all the same. self pity and ego are basically the same thing just on the other end. So I kind of feel like I'm really learning how to sit in the middle and be okay with it. That's very empowering.

Scott Benner 1:16:24
You told me something that I found shocking a little bit before, which is that you didn't you didn't seem to think of yourself as attractive till recently. Is that right?

Maia 1:16:34
Yes. Yeah. I mean, I wouldn't say that I am. But I was in such a bad place in my life. And like, I didn't even look in the mirror for five years.

Scott Benner 1:16:43
I was only I looked at different people in the Kohl's catalog, but you did but you're handsome men. Thank you much coming from me or not? I'm not certain but but but you certainly you certainly are. And so even that, like is fascinating. And and it's a rehashing between you and I but I made a joke the last night it would have been so much smoother if I just recorded it the first time. But I joke The last time we spoke that I saw pictures of you. We went to New York City for the gay pride parade. And I I don't know what I don't remember how I joked or what I said at the time. But then you shared with me that you're Are you

Maia 1:17:21
celibacy, you're

Scott Benner 1:17:23
celibate during your recovery? Because that's how serious you are about your recovery. But that you did get to New York and realize, suddenly, people were looking at you like, Hey, this is a guy I'm interested in. And that even took you by surprise,

Donny 1:17:39
though. Yeah, it was definitely an experience. So, you know, they say, Well, let me back up a step. So the treatment center that I went to the medical doctor, who was also gay, had come to me and said for the amount of drug use, and where I was sitting mentally and life, and I guess I could, wasn't gonna say, I'm gonna say, because it's such a key piece to this topic. You know, I was only having sex when I was high. You take those drugs away. And I'm really uncomfortable. And like knowing my in knowing what had happened? Well, of course, it makes perfect sense. You know? So drugs, and love will say the word love, sex and lust. Well, basically all the same thing I was looking to be loved. I wanted to last, and drugs were heavily involved at all times. So this medical doctor had told me that I should probably be celibate for the first two years while recovering because it would be so easy to slip up, you know, finding someone that may be attracted to me that wanted to get into a relationship. And if we're at that moment, he goes long goes do a little bit of drugs. So it would be very difficult for me to say, No, you couldn't separate those two things. And

Scott Benner 1:18:59
so yeah, for complete clarity as an adult, you've never been intimate and not altered.

Maia 1:19:05
Correct.

Scott Benner 1:19:06
I'm sorry. I really am. Okay. Yeah, that's okay. That's something. Well, I think, listen, I feel like I know, it's weird, and we're older and stuff. But, you know, once you get through your recovery, I'd like a text message that said,

Maia 1:19:24
Listen, I already have my hotel booked for next summer. For pride. I'm very excited.

Scott Benner 1:19:29
So we should just say right now, gay men in the New York area. Be careful. Because daddy's coming, figuratively and literally next summer.

Maia 1:19:41
Oh my god.

Scott Benner 1:19:43
Is that how does that feel? Does it feel like a goal? Like does it feel like Christmas?

Donny 1:19:49
You know, what it feels like is that I finally love myself. This has given me a piece of me that I've always wanted. And I think once I got past that part of somebody thing was taken away from me that I'll never get back. And that I learned that I can work around this and fill it with something I can't take back. I can't get back what was taken away from me. It's never going to happen. Time, the innocent all of that. But I can live a really good life understanding that I could fill it with something that I create. And what I'm in right now is the creative process. You know, I can't even tell you how happy I am that I wake up every day, and I love myself and I want to get up and I want to do I want to you know what, I'm not trying to be a good person, I just want to be a better person than I was yesterday. And that's with me. That's what the people around me, and what I'm trying to do with my life, and that's a really good feeling. Yeah,

Scott Benner 1:20:47
I want to finish up with that a little bit, too. So you made a fairly large shift in your professional life. Yes, I'd love to know how you how you came to that decision.

Donny 1:20:59
Um, so I come to so when I went to treatment, I felt so good. So quickly, that I never wanted to leave. You know. So I stayed connected with the treatment center. And I actually worked there now. And I am actually back in school, getting my bachelor's in human services with a concentration on addiction counseling, and most likely will get my master's in social work to become a counselor.

Scott Benner 1:21:29
That is really great. And even in the interim, while you're in school, you're working, they're doing the jobs you you are qualified for. So you're going to be a ground up, you really are going to be you're going to be the guy who one day is the CEO who started in the mailroom like that feeling.

Maia 1:21:45
Yeah, yeah. Hundred percent. I feel like I'm starting in the mailroom of a fortune 500 company and just working my way up.

Scott Benner 1:21:51
That's so cool. It's, it's, um, you feel like you're doing it for Is it a little for you a little for them? Is it? Like, do you mean like, are you? Would you are you? Were you afraid to leave that place? So much so that you're like, I need to stay here, even if it's professionally or was it a real feeling of this place helped me so much I want to give back. It's a real feeling of this place helped me so much that I want to give back. Um,

Donny 1:22:17
you know, to keep what I have, I have to give it away. And selfishly, I want to keep everything I have, if that makes any sense. No, I only I'm finally sitting in a place in my life that I really enjoyed my life. And I'm not faking it on the outside, that I'm never going to give this up. This is my feet, or whatever I need to do. To stay here I'm going to and, you know, I work in Narcotics Anonymous program. And, you know, it is a spiritual program. And there are some mechanics of it that aren't spiritual, you know, you talk to people, you go to meetings, and you give back. And when I give back the amount of love and clarity and happiness that I feel about my purpose in life is so strong that I would just want to continue to give back.

Scott Benner 1:23:07
I have to say, I understand that I am. I did this thing because someone asked me to write the I was asked to would I make a private Facebook group where people who listen to the podcast could talk about diabetes. And I resisted it for a very long time because I did not want to be responsible for that space. Sure. And one day, I just thought, you know what, they're adults, right? That I'm gonna give it to them, and then they can do what they're gonna do with it. If they ruin it, we'll throw it away. And if they don't, we'll have something beautiful. And the other day, I was able to go on and I don't go there that often. Like I I kind of bang through sometimes I'm like, wait a go. That's amazing. Good job. Like that kind of stuff. Because I don't really I don't have the time. Donnie, hold on. I lost you

Maia 1:23:58
know, I'm here.

Scott Benner 1:24:01
Tony, are you there?

Maia 1:24:02
Yeah, I'm here. Hello.

Scott Benner 1:24:12
Hello. I'm sorry. I don't know what happened. The good news is is that our entire recording is safe. I just don't know what happened.

Maia 1:24:19
I was like, if you call back

Scott Benner 1:24:23
about being molested.

See, Donnie, give me one more tour. I

Maia 1:24:36
know, we're gonna need you to do this better.

Scott Benner 1:24:38
No, seriously. First of all, we're wrapping up, but I wanted to I didn't want to just let it die there. But sure. So I was saying that I started this space. And in kind of short order, it has over 2000 people in it. And but but that's not what's amazing about that's a fairly small number for a Facebook group. What's amazing about it is Not one blocked account, not one disagreement that they haven't resolved on their own. Like, it's really like minded, thoughtful people trying to help other people with their diabetes.

Maia 1:25:15
God, think about the person that tagged you to get to me, we didn't even know me, you know what I'm saying? Like, it's awesome. Well,

Scott Benner 1:25:27
my goal like so, listen, I would never say it out loud. You know, you don't say what you mean to do when you start it. But when when I thought, Okay, let me give this a try. Like, I'll put these people together. My goal is, is that is that people don't leave the space. So like, I know, it's, it's fun to listen to the podcasts that go Scott, he's really good with insulin and stuff. But there are a lot of people who are very good with insulin, not a lot of people stay behind to tell someone else about it. Right like that. And so I'm trying to create a group of people who don't leave, who who stay and support people. And that's how your story made me feel about when you said, you know, I'm going to, I'm going to become a, I'm going to become a drug counselor, I'm going to become a therapist, I'm going to get my master's degree, I'm going to help more people like, like, you went through the fight. And now you could just walk away and be like, Alright, well, the rest of you good luck, you know, but but that's not what you're doing. I think that's a really big deal. I'm, it makes me feel proud to know you. You know,

Maia 1:26:26
I appreciate that. That's really, really nice to say, I think, you know, if I was going to put write this down in a nutshell, I'm like, What in the world? And why? You know,

I don't think,

Donny 1:26:44
you know, I do know, I went through this, because I was supposed to, and like, I got here, because I'm supposed to help someone else get through it. Because there had been too many times that I was about ready to jump ship, and just fall and be done with it. And I could have ended up in jail. There have been situations I could have been killed in there many, many, many hours. You know what I'm saying? And it never happened. And it happened for a reason, because I'm supposed to be doing things like this. You know, like I had mentioned earlier, my anxiety was so bad that I couldn't pass college. And like, all I do is speak and like I just spoke at a medical college, to the graduating class of 115 doctors about addiction and bedside manner and how to talk to people and things like that. And I speak regularly at meetings, and I do support groups. And

Maia 1:27:43
basically, because

Donny 1:27:46
people need to know that there's a, there's a way out, you know, and if I don't talk about how I got out, it's not going to be available to the next person. You know what I'm saying? And like, I think that's what this world is all about. We're supposed to stay connected and help each other for some reason. We forget that.

Scott Benner 1:28:02
Yeah, move forward, continue to move forward and help other people move forward. Absolutely. Because your story is uncommon. And so therefore, there are not as many people left at the end to retell that story. So if there aren't as many people to retell that story, and those few people decide not to retell it, and everyone's stuck starting over all the time, and just left to the randomness. And I don't know, I think that's great. I think about diabetes the exact same way. I've said it before I can picture myself standing in the shower, crying, thinking, I'm killing my daughter, because of the very things that you said, about not understanding how to use your insulin, just the same situation that everyone's in. And it feels to me, just very wrong, to look back at everybody and just go like, I figured it out. Good luck, suckers. You know what I mean? You know, yeah, I'm out of here. And and don't get me wrong. There's some days where I'm like, Oh, I said diabetes one too many times today, you know, but

Donny 1:29:02
not the same thing about recovery. Yeah, right. I do, you know, but like to think like, and I'm not, and I hope this doesn't come across wrong. Like, you don't have diabetes. You don't know what it's like, and you saved my life. You helped save my life. You know what I mean? I'm like, eternally grateful for that. Because what you did and what you're doing for people, you didn't do this, you know, in your head going, you know, in three years, I'm going to help some guy get off the drugs and not kill himself. I know that wasn't in your head, but what you're doing and your love and your passion for what you do. The ripple effect got to me, and then my ripple effect. Hopefully we'll get to the next person. And that's what I'm trying to do. That's

Scott Benner 1:29:46
lovely. I just didn't want people to cry in the shower. Honestly, too sad place to cry. Just, you know, it really is. I And really, the shower was me. I was hiding. Like my wife would come home and be like, how was your day? I bet Great, everything's fine, she's doing great. You know, I didn't get a chance to take a shower, let me just jump in the shower before dinner. And then I would just jump in the shower and the pressure and stress of keeping a kid alive all day with diabetes when I didn't know what the hell I was doing, I would explode. And then I'd pull myself back together and then do it again. You know, and it's just, it's just nobody deserves to feel that way. When there's no reason that you should have to feel that way. Like, there's some bad stuff in life we all have to go through. But, you know, it just just seems obvious, like, but you know, I don't you know, for reasons that I think we've all, you know, hashed and rehashed over and over again, people don't tell people about how to manage their diabetes, doctors don't, you know, other friends don't like, it's just not what happens, right? I just that's unnecessary,

Maia 1:30:52
endless.

Donny 1:30:55
And it affects every other portion of your life. You know what I'm saying? Like, it affects your happiness, your sadness, your mood swings, how you eat, how you live? How do you communicate with people about, can I go to dinner? Well, what time are we going to dinner, you know, ah, everything. I mean, everything I would

Scott Benner 1:31:16
any health care professional that helps people with diabetes, to go back and take 300 hours and listen to this show. And then tell me that your first words to a person with diabetes shouldn't be, hey, this sucks. Sorry, it's going to be alright. Pay attention. Here's how insulin works. And here's how you're going to use these tools to make it work for you. If that's not why you can listen to this and not come to the conclusion that that's how you should be speaking to people, then you have a much different idea of people's happiness and health than I do.

Maia 1:31:48
And they're in the wrong profession. Yeah.

Scott Benner 1:31:49
100%, right. And that that does exist to you got to be careful, you know, sometimes, sometimes, you know, three strikes, and you got to change doctors.

Maia 1:31:58
And I'm glad you said that, because I did want to touch on this.

Donny 1:32:02
You know, when I had met Jenny, and worked with her, and the amount of I don't even want to say care, because if anyone knows Jenny, she's amazing. Like, I honestly, I would live next to her and want to be next to her and have every meal table cookies, that I mean, she's so knowledgeable, and she's just such a good person. Like, it was like, Ah, it's just so awesome that to be able to connect with her for four months and like, feel good about myself and have someone in my corner that's like really felt like a team player was like, rooting me on. It was it was a game changer for me. But I had learned so much from that little amount of time, that when I went back to my endo, which did not take very well that I got outside help. In the beginning, they were all for it. But when I came with my new pump settings, they didn't even want to look at them. And I actually was told we'll call you when we go over these changes. And we'll be in touch with you and I never heard back from them. So from going from working with Jenny and understanding, That's not right. I'm not being treated right, I have the courage to find another doctor. And I actually have an endocrinologist right now who is a type one. And it's like the best relationship ever. Right? But I would never have known anything different. If I had not started this process, you know what I'm saying? Because I didn't know anything different. You know just how discouraging it is to see an endocrinologist make a pump change and say get your bloodwork done. We'll see in three months. You want my bloodwork done today. You just made the changes 30 seconds ago my pump. That's what what are you talking about? You know what I mean? Like that's, like, I know better than that. And you're the pay professional, you know, so it's uh, I don't know, I'm super lucky that this process has found I was able to find my tribe, I was able to find my recovery I was able to build a community around me to support me and want me to do better instead of pulling me backwards I'm like super grateful you're part of it, man. Thank you.

Scott Benner 1:34:01
It means a lot to me. I'm thrilled that we that we met it was you know, obviously just random and I will never know who that person was. I don't think that that put us in touch but I'm glad that happened. I really am and for a number of reasons not the least of which is that you came on here and did this twice. And and I know this wasn't easy for you. You know even though you are speaking in public This is recorded it's different.

Maia 1:34:27
Yeah, it is different. Yeah.

Scott Benner 1:34:29
And at the same time, I can just tell like I can hear in your I can hear your words and I know how it's going to hit different people who are in not your exact situation but in funny ways are in your exact situation for now, and I'm looking forward to those people even though I won't meet most of them. Having those little like celebration moments like you've said so many things along this this hour and a half where I feel like someone should be standing behind you like blowing up balloons and like throwing confetti up in the air. Like just Just the smallest thing like I switched doctors, like if you have been listening for the last I don't know how long and you've heard, you know, Danny's journey and how he's been impacted by it's like logically switching doctors is something you probably couldn't have done two years ago.

Maia 1:35:15
No, right? No, no, no, not at all right? No,

Scott Benner 1:35:18
it's just amazing. It really is wonderful. I mean, you're such a, you're such a happy story. I mean, it seems like it isn't. But it really it really is, it's just a wonderfully happy story, and you have something, I'd like to leave you with this. For me, I think you have something. I don't know if it'll ever make up for the things that happened to you, or the things you've been through. But I think you have perspective and context that not many people get to have. And I think that's valuable. And I bet you it's gonna pay you back in a number of different ways for the rest of your life. So, and other people as well.

Maia 1:35:53
Wow, thank you

Scott Benner 1:35:54
know, it's it's worth it's, it can't be we can never say any of that was worth it. But you have a superpower. But I was supposed to go through it in person, you have a superpower. Now. Some of us don't get, you know, and you start our conversation talking about and, and how she came on? And has that power to? Yeah, she does. She asked if you don't see the, if you don't see the relation between her and you, you're not, you know, looking closely enough, you know, so, um, that's it, it's a, it's a wonderful thing, I think it'll serve you a million different ways, wonderfully. So

Donny 1:36:29
I appreciate that. It's done a lot for me already. So I'm, I'm lucky to be here. I'm grateful to be here, you know, and I don't go through life trying to get or have anything more than I already have. Because what I have is enough. And that's what I've always ever just wanted was just to be enough, you know, and I think there's definitely going to be some people out there that are going to connect on the level of what happened to me as a child, and if they never address it publicly, I hope that they can get a little bit of amount of healing from hearing it through me.

Scott Benner 1:37:03
No, I think they will, I think you're, you're maybe the exact right person to pass that information to other people, you just you have a way of while we're talking, you're accessing things that should that are and should be painful. And you're explaining them in a way that I can understand. Yeah, and it feels like it's moving me forward in my understanding of these things. And I think once you get to a room with other people who have had those similar experiences, it's gonna resonate with them, you know, a million times over, and, and you're gonna stand in front of them as the example of it could really work out for you. You know,

Maia 1:37:43
I really appreciate that, you know, um, there's also a level of healing that happens on my end as well. So I do appreciate the opportunity to heal just a little bit more today, you know,

Scott Benner 1:37:53
now I appreciate it too. And I will, I will mirror that right back to you by telling you that I you know, I see the notes. I know that podcast helps people. The very not secret secret at this point is helps me way more than it helps you. It helps me with diabetes and my daughter, but it helps me personally to

Unknown Speaker 1:38:13
I am.

Scott Benner 1:38:16
I am such a better listener than I was five years ago.

Maia 1:38:20
Right. And I actually have a voice today. Yeah. And I try I try to use it wisely. You know, I think your is is

Scott Benner 1:38:27
wonderful. Well, it's not sitting kissing each other's asses. Let's just here's what's gonna happen. you've recorded two podcasts to get one out that was nice. And we're all rooting I think we're all rooting for you to go to New York and have a ton of really guilt free sex.

Maia 1:38:47
Oh my god that just got real uncomfortable. everyone listening

Scott Benner 1:38:51
is like oh my god, I need to stay at least alive till the summer to find out if what happened

Maia 1:38:58
to me I count together to help pay for my hotel. Expenses

Scott Benner 1:39:09
100% thought you were gonna say condoms

Maia 1:39:13
is now sponsored by Trojan

Scott Benner 1:39:15
hey listen if we can add from Trojan I'll take it. Oh my god. All right, listen, I'm gonna say goodbye. And let's say goodbye via like a person after the recordings over so thank you so much for doing this. I really appreciate it.

Maia 1:39:28
Thank you, Scott.

Scott Benner 1:39:37
Huge thanks to Donnie for coming on the show and sharing so much of his story with us. It could not have been easy. And you know what in honor of the afterdark series, and the bleeping out that's gone through let me say this. I want to thank Dexcom for being the best mcgm in the whole world. And the Omni pod, whoever over there. figured out the Make a tubeless insulin pump your I am genius. Go to dexcom.com forward slash juice box and my Omni pod.com forward slash juice box to find out more. And if you want to see a lot of people doing some really good work, go to touch by type one.org I'm not going to curse about them. Although I think that what they do is absolutely amazing. You must know what to do. Go support the sponsors Don't break my house. If you're currently struggling with addiction, please reach out to someone for help. It could be a treatment center, a hospital, a family member, a loved one are strangers on Facebook, no matter how dire things feel. I believe you could make it to the other side. You just might need some help. If you suspect child maltreatment you can go to the Child Welfare Information Gateway it's at child welfare.gov. That page will explain how to report suspected child abuse or neglect.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Pandora - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

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#304 Loop de Loop

Like a Melody in my Head

Melody and Scott talk about DIY Loop and type 1 diabetes. 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello everyone and welcome to Episode 304 of the Juicebox Podcast. Today's show is super sized. And because it is super sized We will also give it a super sponsor, how bout touched by type one.org used to be dancing for diabetes. Same great organization new name, check them out touched by type one.org. And who else should be the sponsor of today's show? That Contour Next One blood glucose meter. If you don't know about ardens meter, the Contour Next One, check them out at Contour Next one.com. You can even click on links in your podcast player, the ones that are available at Juicebox podcast.com. We're at your next endocrinologist appointment, just ask your doctor to switch you to the Contour Next One.

So far, I've done two episodes dedicated to looping. If you don't know what looping is, you should go back to Episode 227. And listen to that one called diabetes concierge. And then jump to Episode 252. A loopy few months. Diabetes concierge will explain to you what looping is in detail with Katy de Simone. And then in 252, it's a 14 week follow up to Arden's time looping. Today's episode is me trying in vain to figure out looping. By having a conversation with a mom, who is also looping, I want you to keep in mind that as I speak these words, it is six months past when this episode was recorded. My goal here is for you to be able to take this journey with me as I learned algorithm based pumping. But for me to be far enough ahead in real life, that when you get through listening to it, I'm able to already start talking about it. So this is going to be the last episode of me being like looping, I don't understand. And the ones that will come in the future will be a little more about what worked and what continues to work. Because I believe that algorithms are a future, treat them well and let them lead the way. Please remember this. Very, very important in this episode. 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. Remember the algorithm that we are talking about here today is do it yourself. It is not from a company. It was downloaded from the interweb it's not even FDA approved. If this all sounds confusing, Do you seriously, go back to Episode 227. Then listen to 252 then come back to this one.

Unknown Speaker 2:36
Hi, I'm Melody.

Melody 2:43
Melody. Would you like me to introduce you? Sure.

Scott Benner 2:48
Okay, a lot of pressure, saying who you are. Then the rest of this should go

Unknown Speaker 2:55
really early.

Scott Benner 2:57
So melody is someone I asked to come on the show because she is the overseer of people's looping. And she understands it in different ways. So who do I reach out to that I reach out to Pete? Yeah, okay. And Pete works at tide pool and your husband works with, with Pete that tide pool, and then pizza to your husband.

Unknown Speaker 3:19
Pete sent an email and said, Hey, would you be interested in doing this? And Matt said, Melody would

Scott Benner 3:25
see how easy this was to say who you are.

Unknown Speaker 3:28
So many people passing the buck in that situation. So

Scott Benner 3:32
melody is Matt's wife or the way melody prefers to think of it Matt is Melody's husband. And Matt works with Pete and Pete works at tide pool and tide pool is taking the DIY loop app and trying to get it through the FDA. Did I say all that right? Yes. All right, look at me. Now. My goal was I've had two looping episodes so far right? At first I had Katie on and Katie really explained looping to me and brought me in from the ground up, because I really did not know what it was or what I was talking about. I was pressed by a listener to find out more about it. And I was completely happy with my daughter's care. And I didn't want to loop I was waiting for Omni pod to come out with whatever horizon is gonna be and I was gonna try that. So I got pressed into it by a listener and I thought, you know what, True enough. This is going to be the future. And I should understand it so I'll jump in sooner and try to wrap my head around it. So Katie came on she explained it to me Katie was really cool. She sent me her Riley link. an extra one we trot got set up and tried it. I hated loop. In the first three days, I almost quit. In the second three days. I really almost quit. I've almost using it a million times two weeks ago, I almost stopped using it. But nevertheless, I persist, which I believe I believe is a famous quote that I'm taking out of context and one yeah, so I had another episode on looper Jenny Smith came on. And she and I just went over what I thought of Luca. Here's the funny thing when it was over, I thought, Oh, I'm gonna hear back from a lot of angry loopers who are like, Oh, you, you know, don't understand or Let's all instead, all I got back was a lot of people going, yo man right on, like, that's exactly what happened. Oh geez. So my next goal was to have someone on who's doing it with success and has been doing it much longer than me. So that we can really just interview you about what it's like to use it, taking my experience out of it. So that's what I'm hoping to do today. Does that make no pressure at all? No, I mean, you're just gonna screw up the entire movement. If you get this wrong melody. That's all

Unknown Speaker 5:40
right. Like,

Scott Benner 5:42
your husband doesn't need that job, does he?

Unknown Speaker 5:45
We're fine.

Unknown Speaker 5:47
We don't need insurance or anything.

Scott Benner 5:49
Exactly. So let's get a little background on your first how many kids do you have? How many of them have diabetes? Who else has diabetes? What's the deal?

Unknown Speaker 5:57
We have three daughters. And our youngest, Hazel is the only one with diabetes. She's the only person we we knew no one with type one when she was diagnosed. It's not a family thing. totally out of the blue. kind of situation. And she was 18 months old when she was diagnosed. I was the person who diagnosed or our pediatrician kept brushing or brushing us off. And eventually, I just took her to urgent care and said, okay, pediatrician, we'll just do this urgent care thing. Um, and urgent care sent us to the ER. And while we're waiting for room in the ER, Matt started Googling, like type one things. Like we're both doing, like, we're both talking to family and like keeping people informed and all this kind of thing. But he started Googling and came across the we're not waiting movement, the like less than four hours into diagnosis. And so he was like, This is great. And I was like, I'm not in a place to hear this right now. Talk to me later.

Scott Benner 7:10
18 month old has diabetes, you found some well meaning idiots on the internet and you want us to hand their care over. I'm not really

Unknown Speaker 7:18
wasn't quite there yet. It was just, it was just here's something that gives me hope that this won't be as terrible as we thought. And so that got a back burner. And over the next couple of weeks while we were trying to figure out what we were doing. Yeah. And before we left the hospital, I asked the doctor for a CGM and a pump. And he was like, sure, what pump do you want? I was like, I don't know, you know more about these things than I do. And so we started out with an animus Ping. Um, that's what the, it was a teaching hospital and, and the fellows and the residents, they conferred quickly on the round and was like, probably the NSP? Yeah, yeah, enemas. And so about six weeks after diagnosis, because insurance is slow. We started her on both the Dexcom and the Animus. And once we kind of got settled into those, it took about a month. Um, Matt started reading more about the, the looping and the open APS, which they're two slightly different systems.

Unknown Speaker 8:33
And

Unknown Speaker 8:36
it, we had an HMO at the time. And I know a lot of people struggle with insurance, but it's so hard to get supplies sometimes. Like I was doing the primary, I had the primary role of like fighting with the insurance company and saying, Do you really need another prior authorization? kind of thing?

Scott Benner 8:58
You need me to send you another piece of paper that says she has diabetes? Because I've done this already? Yeah. Could you could we all just agree, you're trying to put me off for a couple of wait a couple of months, then you can send this stuff over without even

Unknown Speaker 9:10
Yeah. And so. So Matt started saying, I think we should do this looping thing, but we need to do, but it has to be an old Medtronic pump. And I was like, Okay, I'm spending all my energy getting the supplies that we need for this pump. If you get the pump and you figure out how to get the supplies for it, I'm on board,

Scott Benner 9:27
leave me out otherwise.

Unknown Speaker 9:30
But I can't handle trying to secure supplies for two different pumps from two different supply chains. And, and so he did, he posted a link on a post on Facebook with a cute picture of Hazel and said, Hey, anybody have old pumps that they're not using anymore, and we got two or three. One of them worked for looping with the old Medtronic pumps and so about six months after we We started her on the Animus Ping. We started looping.

Scott Benner 10:03
How long ago was this? Like? What year was it?

Unknown Speaker 10:06
It'll be two years next month.

Unknown Speaker 10:08
Wow. So we're,

Unknown Speaker 10:10
we're about, we're about to hit our loop. aversary.

Scott Benner 10:14
Okay, so so that your daughter Hazel's had diabetes for two years. And in that time, yeah, yeah. You've just sped completely through all of this process to the point where your husband now works that type of what did he do before? Please don't tell me he was like a butcher before? What did he do prior?

Unknown Speaker 10:31
No, no, he was an auto mechanic. Just kidding.

Unknown Speaker 10:35
Um, he was developing mobile apps for higher ed. Okay.

Scott Benner 10:42
Okay, so is he right now as best as you're allowed to say? Is he helping to refine the loop app for typo or what?

Unknown Speaker 10:50
He's a product designer? So he's not doing any of the technical stuff. He's doing the make it look pretty pretty and be usable?

Scott Benner 10:58
I gotcha. All right. Well, that's simple. That's more, it's not more important than how well it works. But, but it's it. But it's incredibly important. Because if it's not intuitive, then then people will be put off very quickly, and then maybe never come back to it. So

Unknown Speaker 11:11
that's exactly what we have way too many conversations about. So does this make sense to the user does this?

Scott Benner 11:19
So melody? Are you good at answering those questions, honestly? Or is the DIY loop from tide pool just going to be exactly the way you want it?

Unknown Speaker 11:29
Well, Matt is not the only product designer, so he's one of a team.

Scott Benner 11:33
They have wives, too. I think he right now, there are four ladies who have children with Type One Diabetes, who are gonna be different, not just joking, but

Unknown Speaker 11:41
well, and some of them have husbands.

Scott Benner 11:44
Or vice versa. Of course, I'm a sexist, I didn't understand. Trying to get through the conversation quickly, but I appreciate that. No, no, I'm okay. But good.

Unknown Speaker 11:52
And, um, they The cool thing about tide pool is almost everyone who's working on this project has either has type one themselves, or is the parent or married to someone with type one. So it's very much I'm close to everyone working on the project, a personal connection? Yeah. Okay. So all right. Let's dig in. So so let's assume I'm going to make some assumptions here, that mat set the loop up originally, like you weren't digging around in the code. And he did that. That's our division of labor. He did all of the build, and technical support. And I'm the one who generally does setting changes and such.

Scott Benner 12:33
So let's go back in time to when you strapped it on the first time. What What was your Do you remember your initial experiences and what the first roadblocks were and how you got over them?

Unknown Speaker 12:44
Oh, I remember, we started out in open loop. Which means that, excuse me, we weren't letting the system make any, any bazel change decisions. It was running just her schedule. bazel. And we were both listening through the phone though. Um, and we were trying, we actually we ran it for a day without it connected to her. I don't remember how we got the CGM data, but like ran it for a day watching what it would do just with the pump, tubing hanging off the end of the couch.

Scott Benner 13:19
That's interesting. So So were you genuinely afraid at that point to just hook it to your kid and be like, Oh, I hope this works.

Unknown Speaker 13:26
I don't think we were afraid. I think we were cautious because she had just turned two. And she was 25 pounds. And this is a DIY thing. Right. And so I think being cautious is warranted.

Scott Benner 13:42
100% Listen, you you you got a you got a used insulin pump off the internet that downloaded some code from some nice people. And I think I think it would have been reasonable if you would have looked into a pig first. But I get what you're saying.

Unknown Speaker 13:54
pata pigs and maybe our older daughters were not willing to be guinea pigs

Scott Benner 13:59
for money.

Unknown Speaker 14:02
Although one of them probably would have done it for LEGO sets. But we didn't go there.

Scott Benner 14:06
Well, that's really, first of all, that's smart. So you basically just watched how this thing administered. And so just to make sure it worked.

Unknown Speaker 14:13
Yeah, and just to see if we can understand the decisions it was making, if there was going to be like any glaringly obvious things that we needed to change in the settings or things like that. Um, and then I remember, we put it on her and the Medtronic pump use the same infusion set as the Animus. So it was really easy to just switch it over. We put it on her and we were running in an open loop. And we went to do pony rides that day, we were watching this open loop and like pushing the button every five minutes because it will give you a base of recommendation and you can push this button say yes, I agree with that. And I got tired of pushing the button and I was like, Man Can we just close the loop is it makes sense what it's doing? And he was like, are you sure we're ready to do that? And so like that this was your idea.

Scott Benner 15:07
You said, you're not sure.

Unknown Speaker 15:11
If he was going with the cautious approach, which I appreciate, and

Scott Benner 15:14
he's being a guy, I do this stuff to my wife all the time, I push us to the brink of like something that I'm like, are you sure we should be doing this? She's like you said to? Yeah, that I see what you say he's trying to take away anyway, go ahead. I know.

Unknown Speaker 15:29
Eventually, it was, she had just gone to bed. And her blood glucose was pretty stable. And we decided to close the loop. Because closing the loop meant it would automatically suspend Basal if she started to go low. And I remember very clearly, we had nightscout setup, which is another monitoring to third party monitoring. app. Yeah. So we had that set up. And we literally sat on our bed and watched the night Scout, every five minutes, like her bazel would slightly change, or, and there were tears involved, because we're like, this system is doing all the work that we've been doing for the last six months, which isn't as long as some people have been doing all this work, I realize, but it was just this gratitude and happiness that there was finally something that was helping us keep our kids safer.

Scott Benner 16:24
Can you looking back now Do you know how many people approximately were using it when you started using it?

Unknown Speaker 16:30
Um, I think it was less than 1000. I

Unknown Speaker 16:37
remember, I have the number 400 in my head. And I don't know if it was 1400 or 400. ish.

Scott Benner 16:43
Yeah. Well, one way or the other, not a lot of people. And these aren't even people you can quantify are using it. Right? They're just they had downloaded the bottle. Right? Right. Right. So first of all, you're really great parents. And I'm not joking. I'm not joking, you should be lauded. It's really amazing when I put the loop on art, and she said, Is this thing going to kill me? And I? I responded? Probably not. So then she looked at me like, Are you serious? I'm like, it'll be fine. And then we walked away from each other. So

Unknown Speaker 17:15
the risk aren't the risk are not inherently in the loop system, the risk are in diabetes, right? If something's going to kill them, it's going to be diabetes, right?

Scott Benner 17:23
Because the loop does not say the loop doesn't go, Oh, I'm gonna give you 10 more units of insulin. It's you can you can make your settings so that stuff like that can't happen. And, and I was mostly joking with her. There was part of me it was like, I mean, I don't know maybe, but it doesn't seem like just a lot of people using it. They haven't died. Let's give it a try. Which I think is the pioneering spirit if you ask me. But she laughed and and we went along our way. And and it was terrific. How soon into the process. Did you first want to quit looping? Or was your experience before looping so much worse than looping? And not that looping is bad? I'm just trying to set up an idea in your head. Because let me give you my thought. We were doing incredibly well without looping. My daughter's a one c 5226245 years. no appreciable lows, no highs, anything over 140 was a little unheard of in our house, and eating whatever she wanted. Yeah, then I go to looping. And I'm gonna be honest with you. It's still not that good. In the loop still can't do what I was doing prior. Now. It does do things that I couldn't do. Here's one of them. It you alluded to it a second ago. It can do things while I'm sleeping. And I can't so last night. Perfect example. didn't feel well. When I was going to sleep. I was like, Huh, little tickle in my throat. Gonna really need some sleep tonight. Right? I don't want to get sick. Arden's blood sugar was a little low. This is around 11 o'clock. She's up studying really late. we bumped her blood sugar back up. I closed my eyes never thought of it. And she woke up this morning. She was 106 Beautiful. That is what the loop does that I can't do it can it can it can make decisions in the wee hours of the morning without dropping dead. I can't I can't do that.

Unknown Speaker 19:07
We call it our robot nanny.

Scott Benner 19:09
Yeah, yeah. It's fantastic. So So every time I hit a roadblock about loop, I just think I can figure this out. And and I'm doing something and I hope people don't think of it as hard headed. It really is about me and how I learned and about the podcast too, because I want to be able to explain loop to people in the future. And these algorithms in general, I do not go to other people to ask about the loop. I help I let people help me set it up. And since then, I do not ask anyone's help I look at what that thing does. And I try to imagine how to get the result I want and I'll give you an example. Right now. I'm doing what I consider to be an extended bolus with loop right so if Arden's meal is 70 carbs out, tell it I don't know 30 carbs at a two hour absorption rate, and then 30 carbs at a three hour absorption rate and 10 carbs at a four hour absorption. Right? And that way I trick it into leaving the bazelon. Right, I'm so thrilled with myself when I have no idea.

Unknown Speaker 20:18
I think that we came into it a little bit differently because we didn't have a really long traditional pump therapy experience. And, and so, instead of learning all the tricks on a regular pump, we were learning them in loop. And so I think that changed our experience. I don't think I ever thought about quitting. And when, when the Omnipod caught code was released, we switched Hazel to Omni pod. Um, that was May I think,

Scott Benner 21:00
you just recently that's got to be you. And I have probably been doing it about the same amount of time. Is it on Wi Fi?

Unknown Speaker 21:05
Yeah. And the Omni pod Kenya's going into different angle than the steel ones we were using. And it was a really hard transition. And I don't think I ever felt like quitting. But I felt like a failure a lot. I was like, Why can I not get this right?

Scott Benner 21:25
And how right was it going for you prior to that, like so, if I might, if I may, and if you're willing to. I saw I shared with you. We didn't see anything over 140 frequently I never Arden's blood sugar never languishes in the 160s or the 170s prior to loot, but now it does. Right, right. And yesterday, she had a big after school snack that we totally missed on and it might have taken us four hours to get her blood sugar breaking come Wow. Right so and I'm talking about going outside like opening the loop up injecting insulin like doing like doing all of this stuff. And when I finally broke that's why she was a little low before bed because yeah, we had to put so much into make it go like, I don't those things did not happen to me before. But so what what do you Well, first of all, I guess the question is, is your is your child? Is she eating like a normal? Not like reasonably carb meals? Like it's not a little existence? That's

Unknown Speaker 22:25
her favorite meal of spaghetti and meatballs?

Scott Benner 22:27
Not low carb. Okay, then, and, and what goal? What's your goal for her blood sugar range?

Unknown Speaker 22:34
Um, my goal is for it not to affect how she feels.

Scott Benner 22:39
Okay, so what number do you attach to that idea?

Unknown Speaker 22:42
Um, bought the range I have set is in between 70 and 140. And because she's she's four now, and she commonly doesn't let us Pre-Bolus Okay, because she's four and impatient. We do see spikes when she first starts to eat regularly, depending on what it is and how we like, for example, one day we went to the playground and I packed a lunch for us thinking that we she would play for a while and then we would eat and I would just Bolus or a few minutes before it went out. We were going to eat. Um, but she had other ideas. We got to the playground, and she pulled out a container of grapes and said I'm ready for this now. And it was great. And

Scott Benner 23:32
look over there is that Elvis? Elvis Presley, Peppa Pig would be a little bit more that would get her more than they think probably. Yeah, I mean, Elvis is supposed to be dead. You don't think she'd find that? shocking?

Unknown Speaker 23:45
Yeah, I don't know. I don't think she knows who Elvis is.

Scott Benner 23:51
So So what is that? So what happens then? Right. she's she's throwing you off your schedule. Here's the grapes, Mommy, I want these grapes. You're a nice person. I'm going to give you the grapes. What do you do? Do you do Bolus more than the carbs for the grapes? Or how do you control the spike then,

Unknown Speaker 24:04
um, I

Unknown Speaker 24:07
sometimes that sometimes I do the what they call a super bolus where you give it like, I knew that the grapes were 15 grams of carbs and I might enter like 18 and know that if she needed a little bit more I had a whole bag of food because I never go anywhere without without a whole bag of food.

Unknown Speaker 24:25
And

Unknown Speaker 24:27
and then we is when I talk a lot about um insulin and glucose being the tortoise and the hare in like the old fable. And so as she starts to eat the grapes and like I say, it's I'm giving you the insulin for these but you remember insolent is a tortoise and those grapes are a hair so try to eat them slowly so that they don't win the race. Yeah, because she's for how she learned to give you the finger yet or

Scott Benner 24:57
that not yet.

Unknown Speaker 25:00
He has to learn to roll her eyes because he has a 14 year old sister. But, um, she has not learned much profanity or gestures.

Scott Benner 25:12
Well, she'll get to school in a year or so. And that'll all just show me one terrible little kid. And that'll be the end of it. But no, no, but so does she listen, then does she does she slow walk the grapes when you tell her that?

Unknown Speaker 25:22
Sometimes, but usually not. But we're also at the playground that day. So she ate them and then started running and playing. And so I think she might have spiked up to maybe 180 and then come right back down. So it wasn't terrible.

Scott Benner 25:37
Gotcha. By now you know that dancing for diabetes has changed their name to touch by type one. Here's why they did it.

Unknown Speaker 25:44
For nearly two decades, dancing for diabetes has been spreading awareness about type one, raising funds to find a cure and inspiring those with Type One Diabetes to thrive. Our organizations incredible growth over the last 10 years has pushed us to challenge ourselves and reflect on how we can impact more people to better identify with our community. To properly explain who we are and increase our reach. We are rebranding and becoming touch by type one. rebranding will allow us to continue all of our career programs, as well as expanding grows, then we can reach more people and change more lives. We are ecstatic for this new journey for rediscovering who we are and what we can accomplish for our global community. Together, we enter our 20th year as who we've always been, and who will continue to be touched by type one, check us out a touched by type one.org,

Scott Benner 26:44
check out touched by type one.org. Now type it into your browser, use the links at Juicebox Podcast comm or look right there. In your podcast player. There's show notes. There's a link. All right back to melody. And this thing is just going to start going I am gonna like lose my mind at some point. While I'm talking to melody. Here's a good time to tell you, I found this conversation that I had with melody, incredibly therapeutic. And I have an aha moment. At the end, I know this one's a lot longer than most of them. But this episode ended up being like a therapy conversation for me about looping. So you're really listening to me, kind of hammering my way through it. melody is very generous with how she uh, let's say puts up with me. Alright, let's get back to it. spiked to 180 came back down how long between giving her the first insulin and back down?

Unknown Speaker 27:47
I'm less than an hour, less than an hour. Okay. Yeah, so it's like,

Unknown Speaker 27:53
if she influenced us in this right, then a lot of times, she doesn't spend too high. If she's like, she doesn't spend too high. But that's if the insulin dosing is right. And being a tiny person, getting that right is difficult. So I also learned not to be a perfectionist with a toddler with diabetes, because it was making me crazy.

Unknown Speaker 28:21
And

Unknown Speaker 28:24
the, we have fairly flatlines at night. Because she's not eating, she's not running around. growth hormones always mess that up. And that she sold her other hormones will mess that up too. But, um, but for the most part we have good night. And then in the day, she's she's in range around 60 to 80% of the time most days. And, and on the 60% there's usually something going on we watch for patterns, and then we figure out what it is correct and move on. Yeah.

Scott Benner 29:00
Well, first of all, I agree with you. I am not despite I guess the podcasts that I do. I am not a person who gets upset if a blood sugars not in a flatline and it's 85 I don't feel that way. And I don't I don't try for that. Also in our house when my wife says this is making me crazy, one of a stop one of a stop, sir. And we qualify and go crazier.

But but but interestingly, I also think you're in it. You're I mean, you're obviously I mean she's four, right, four years old, right? So, and it's great that you see it too, because I do also see people online who have pre pubescent kids were like, look at these lines. They go on for days and I'm like, yeah, there's no real hormones like you know, like there's, they have variables but they don't even know yet that the variables that are going to hit them when their kids get older, or the ones that adults have to put up with. You know what I mean? Like they're, you don't realize your kids pretty much an amoeba still Just sort of just floating through life going, Oh, this is great grapes swings. This lady comes with me. You know, that's sort of the deal, right? I don't mind that, like if Arden's blood sugar. If Arden's lunch today would have popped the 140 and come back, I wouldn't have thought anything of it. But here's what happened with Arden's long shot. And it's a bit of a blend of yesterday and today. So yesterday, with a very similar lunch, we had a little spike that happened, and it kind of leveled off around 150. And it came back. So later I was like, Oh, my God loop. We know what we're doing great. Yay. Then I am pack your lunch bag later, the half a sandwich I sent with her she didn't touch. So so 30 of the carbs of her meal she didn't need and it's still missed. So now I'm thinking, Oh, god, what if I would have like, What if she would have eaten that sandwich? Right? Yeah. So today, I when we text about her lunch, she's like, hey, it's lunchtime. I'm going to Pre-Bolus down on the cool. Are you hungry? And she goes, not really. And I was like, Ah, okay, so then we did a slightly smaller bolus. So instead, I think we did something like ended up being about eight and a half units, which I think it was like 30 carbs at two hours and 30 carbs at three hours, something like that, right. And her blood sugar was 106. Wow. Oh, starting out. Starting out. Starting out at 106. We put in this insulin, probably 15 or 20 minutes later, she's eating lunch. And for the next half an hour, 45 minutes, her blood sugar is just it's just bopping along, like 103 95. And we're winners. And then. And then suddenly, it just went 128 diagonal up. And there's a bend in the Dexcom line. Anybody listen to podcasts knows what that band looks like, this is me, I type right into the text message. It's trying to run. And so that's that's our code, right? Like it's trying to run. She says, What should I do? And I'm like, open the loop and Bolus three and a half minutes. And then and then I was like, Did you eat everything she was? Yeah, you know, I ended up being much hungrier than I thought it was. That's great. So So the three and a half probably still wasn't enough. But I was just like, open the loop Bolus three and a half units. That's my new code for smack in the face. And so she's 128 diagonal up after almost an hour of the insulin being in and I am just like, there's a, I see it now. And I'm like, I now know what to do. If I over if I can bolus enough insulin to crush the number and keep it and bring it back. Now I'm learning how to stare at that like not stare. But I know when the graph tells me to turn the loop back on, like yeah, right so that I can catch a low later because I'm putting way too much insulated in this moment. And then if I put the loop back on a little cuddalore away that is something I've taught myself through all this though, keep in mind please while your daughter's that delightful small child buying around with some grapes aren't had half of a peanut butter and jelly sandwich, like those little Oreo flats, that you can spread the cream on yourself a small grab bag of potato chips, a large bag of grapes, ask me how many grapes I have no idea because I would never count a grape and a yogurt.

Unknown Speaker 33:09
So we don't want to count every grape that goes into your teenage daughter's lunch. I

Scott Benner 33:13
have never counted food in my life. That's why this podcast mainly exists. I didn't want to count carbs, it's like I have to figure out how to do this without counting carbs, because I'm not going to do that. And they end up killing her. So what would have happened prior to lube is that I would have made this kind of crazy, bigger bolus, that I also would have included in a large Temp Basal increase along with and then that way when I could tell on the line where we were and and take away the Temp Basal increase if it was necessary, leave it on if it was and I sort of create these two different blankets of insolent with the Bolus bazel where a loop makes me want to curse, spit and and burn something to the ground is it I get this bolus, right? It's perfect. And the loop goes, Hey, you know what we should do here? Let's shut off the bazel. And

Unknown Speaker 34:05
it's all the information you're feeding into the system. And so

Unknown Speaker 34:08
Luke said too much.

Unknown Speaker 34:11
We've only had the information you give it and so Lupe said she's had enough insulin for this for the amount of carbs. So we're going to shut off the insulin because we don't want her to go low. But Luke doesn't actually think because it's a machine. It's an algorithm.

Unknown Speaker 34:29
And, and there is no

Unknown Speaker 34:32
machine learning involved in this. Just clarifying that.

Scott Benner 34:34
Yep, I bring sure to bring that up every time like because you know, people think this thing's gonna see it three times and fix it. It's Yeah, it's not Skynet. So yeah. Oh, God, please. Oh,

Unknown Speaker 34:46
yeah, you know that she needed more insulin. You saw from her graph that she needed more insulin. What I generally do when I see that the insulin that I gave Hazel for male is not enough. I'll go back and retro Add carbs to the meal. Yeah. And then it will continue to it will give more insulin and then add bazel. And

Scott Benner 35:11
so when you do that it gives more insulin but in the form of bazel.

Unknown Speaker 35:15
Um, a lot of times if you enter more carbs into a previous meal, then it'll recommend the Bolus to

Scott Benner 35:21
Yes. Now here's where. And please, I always want to be careful whenever I'm talking about loot because I genuinely mean what I'm about to say. It's amazing. Any any person who put any effort into getting it to this point in the world is amazing. I am not disparaging it in any way whatsoever. But here's where it sucks, because I hear what you're saying. Because like, it's like, oh, pending insulin, but like you got to go into a screen to see that it's not like it pops up and it goes yellow man bolus. It's not It's not like that, right? You have to go figure it out and

Unknown Speaker 35:52
you add carbs. Like if you add carbs retroactively, even then it will pop up. recommendable.

Scott Benner 35:58
It doesn't do that for me, like I know It must be because and as I'm sitting here talking about it with you Arden's some of ardens meals are incredibly carb heavy, right? So even when you're like, Okay, well, let's call it 20 more, I still, it's like, dude, that's not enough for me. And I think I need to be telling it more. But what do I want to say here about that? I it, huh? I'm lost a little bit because this is what this is what Luke does to me. It makes me it makes me lose my thoughts. I want to be able to tell it more. And I do and a lot of times I'll bolus pending insulin because that's a trick that Jenny Smith taught me. She's like, if it's, if it's saying pending insulin, she's like, just Bolus it. And I was like, okay, because it can only steal it away with bazel later that I love. But it's the it's the heavier carb stuff. What I wanted to say was that everything I do for a meal that's not particularly carb heavy, you know, like the like, the night before Arden had a big like sort of just house salad that I made for her. And she ate I think a cheeseburger with it and maybe a couple of other things. She's very interesting the way she she has a an interesting collection of food when she eats us like

Unknown Speaker 37:11
I have a 14 year old

Scott Benner 37:13
you know what I'm saying? Like I should have with this burger a salad I'm like, Yeah, absolutely. Here you go. Why not? And no lie the loop handle that meal perfectly. Now I think had I had it gotten more karbi then it that's when it just I don't know. Like it can't. The bazel can't get ahead of it enough. It tries and and I've and you know I've tried. I know that people warn against like not having your max bazel up too high because you don't want them to be making too many decisions. The bezel? I'm telling you that away from food right now we have the loop working. It's not It's not like my settings are way off. It is a bit of a pain because as soon as she becomes premenstrual then the settings aren't right. And then you have to go in and kind of bump sensitivity.

Unknown Speaker 38:02
I know people who use overrides for periods and pre periods.

Scott Benner 38:07
I have the override setup and I have to tell you, I can't make positive overrides help me I can make negative overrides helped me but not positive. I don't know why I'm still figuring it all out. It's a freeze. Really. It's like I'm in a snowstorm without glasses on I just I look around. I'm like so much swirling whiteness. I don't know which way to walk.

Unknown Speaker 38:28
So many Dexcom dot.

Scott Benner 38:30
Yeah, like what's happening. So So can we pick through the settings a little bit? I would love. I would love your opinion, because I don't know. So when variables kick up, and let's just say that insulin needs are more do I? Do I need to move the bazel the Max bazel the bazel rate and the insulin sensitivity? Do they all need to become more powerful?

Unknown Speaker 38:55
Um, it depends on why like, if you're saying she's great without food, then your Basal is good. Okay. Then

Unknown Speaker 39:07
if she's eating and steady for an hour, and then going up, she needs more insulin for that meal.

Scott Benner 39:14
Yeah, right, right. Right. But what setting is that

Unknown Speaker 39:19
high ratio.

Scott Benner 39:21
That can't possibly be right though, because Arden's carb ratio is like six carbs to a unit. If I make her carb ratio any higher, she's gonna like that won't that that doesn't make any sense to me, because we're

Unknown Speaker 39:31
getting on what what the food is like, there's Hazel, and I go to Starbucks once a week, and we have breakfast there and there's the sandwich that she loves. And it's taken me about the amount of time that we've been going to Starbucks, like two years to figure out how to dose the sandwich and on the menu or on the nutritional information that says it's 28 grams of carbs in this bacon cheese

Unknown Speaker 40:01
egg sandwich thing. Um, I've learned that I have to almost double that,

Scott Benner 40:07
probably because of the bacon and the cheese.

Unknown Speaker 40:09
And, and because it's processed, like, the more processed the food is, the more infinite takes, I don't understand why there may be like some food chemist or something, you can help me figure that out. But like the carb count for fruit is going to always be like, I can give Hazel 50 grams of strawberries, and that's four grams of 50 grams of strawberries and weight, which is four grams of carbs, and give her the infinite loop says it will be fine. I can give her the same amount of like

Unknown Speaker 40:46
something that's been processed, like I'm assuming something. And, and she needs more insulin, yeah. Then the carb count says,

Scott Benner 40:55
I'm assuming you probably have imagined this too, but that your body just can't break it down as well, when it's been processed as it can when it's just an organic sort of singular food that yeah, it's in there. And so it stays in it. Yeah, probably stays in their stomach longer takes longer to break down, gives off its carbs slower over a longer period of time plus the fat and the from the bacon in the morning. I'll spread it out. But that's cool. So you figured it out. But now, but do you say to 28 grams, and you did say 28 grams for 28 grams sandwich? You've doubled it to 56? Don't I paused in there for you to be impressed by math. But you'd have 256 But that can't be all right. You don't just put 56 in and let her eat you spread it out somehow did did you change

Unknown Speaker 41:38
I put it over four hours generally. Like in the him. I pushed the hamburger icon. Okay. And I commonly, I commonly it'll recommend, so Hazel's on diluted and fluentu, which is another fun factor. Um, so the way I think of units, when I say that, I give her five units for this. It's not it would four per units is one regular unit. So

Scott Benner 42:04
right. So if you gave her five real units of that insulin, she would just follow like that. Yeah, gotcha. So how long? How long have you been doing it? obviously been doing that the whole time. But have you? Like, are you gonna Is there a moment when you'll be able to get away from it or waiting for some,

Unknown Speaker 42:21
I hate diluting the insulin, we do it ourselves. And it's a tedious process that if you get wrong, it has major consequences. And so I would love to stop. But, um, we just get better control with the diluted insulin because you can give smaller doses basically.

Scott Benner 42:41
Right? Good for you. I think whatever works is, is the right thing.

Unknown Speaker 42:45
And it's standard is the center of care in our clinic. Like I'm all small children start out on diluted influence. And I don't know why it's not everywhere, but it's not.

Scott Benner 42:56
No, yeah, I don't meet many people at all who use it, honestly. And I talk to a lot of people and, and so it's not something that commonly comes up actually, I'm gonna say to harden right now, to close the loop. See how long it takes me to see that? Wow. Okay, so all right. So you're so how do you think about it? Like, I'm gonna break down some of these settings and tell me how your brain thinks about them. Okay, let's go with let's start with I think insulin sensitivity. I'll start with where do you see what is that setting, say to you? Let's see what happens when I type in the phrase Contour. Next one.com into my browser. Now? I don't think it should be any surprise. I'm on the webpage for the Contour. Next One blood glucose meter, the same exact blood glucose meter who's sponsoring this episode? Are you surprised you probably shouldn't be top of the page, yellow button to get a free Contour. Next One meter. I click on it. It does explain that not everybody's eligible. But it's pretty easy to find out who is email address, your name, birthdate, phone number, address, city state. I mean, it's pretty much that do you have diabetes? What type of diabetes do you have? It's that kind of Zynga. You don't mean and then you click Finish. Boom. Come on. You don't want to go find out if you can get a free Contour. Next One blood glucose meter. You don't want to know if you can have the blood glucose meter that Arden is using that I have been telling you about for a while now that Arden has been using for quite some time. That is in fact, the most accurate blood glucose meter I have ever used with my daughter. Ever. Not only that, the thing is, um, it's handy. You know what I mean? Not too big, not too small. Got a little you get that little light on it. There you click click at night. You can see where you're shooting. And of course, second tried test trips. So if you hit it once, don't get it right, you go back into that blood drop one more time without wasting a test trip. All these are great reasons for you to go to Contour Next one.com honestly, it's even a better reason for you to click on my link in the show notes or Juicebox podcast.com. Cuz that way they'll know you came from the podcast, check it out. I think insulin sensitivity I'll start with where do you see what does that setting say to you?

Unknown Speaker 45:30
That's the golf score. Because like golf scores are, the lower it is, the better it is or stronger. So I always think of it in terms of golf.

Scott Benner 45:43
Strange. So the lower the number, the lower the number is, the more powerful it is.

Unknown Speaker 45:47
Right? And so, I SF, if you're seeing a lot of roller coastering when there's like your, your Dexcom line looks like I'm doing the hand motion, but you can't see that it looks like a sharp waves or peaks, and then you probably need to change your ISF. Um, the ISF is tricky because if it's too strong, like too low of a number, you can get the if it's too strong of a number, you generally get the ups and downs. If it's too weak of a number, then loop has a hard time bringing it back down. But a lot of people compensate for a weak ISF with something else, like higher bezels.

Scott Benner 46:38
So sometimes people make their their ISF too weak, but they jacked their bazel up, which is not the really the correct way for the algorithm to be doing what it's trying to do. What's the telltale of that? Do you see the bezels open and close a lot when you have that wrong?

Unknown Speaker 46:51
Um,

Unknown Speaker 46:56
the telltale would be if

Unknown Speaker 47:00
if so,

Unknown Speaker 47:03
if you have a two week ISF, I'm gonna get this wrong and people are gonna yell at me. No one's impressed. They can't find you. They don't know. You're fine. Don't worry, you told them where my husband works.

Scott Benner 47:14
Oh, please, they figured that out. By the way. In the time you've been talking, I've now written closed loop or you will die. Hey, close the loop. And I finally got an Okay, so we're all good. Now.

Unknown Speaker 47:24
I love waiting for teams to text back. My favorite thing

Scott Benner 47:26
fairness, she's in class but, and she got back to me within a couple of minutes. It's just I like so I'm looking at nightscout off to the side. While you and I are talking. Right? I saw the flatten out. I saw the drop. And then I saw the the arrows stay the same, but the number change and that's when I was like, ooh, close the loop. Because it's gonna start falling. And then she jumped like from like, she jumped like 10 points in five minutes. I was like, hey, just let's close the loop now. Only because she's not in danger. I just don't want her to drink a juice. I'm trying to keep her low later. So anyway, alright, so don't say anything you're not comfortable with. I'm really looking for like your, like what do you do when you see those scenarios?

Unknown Speaker 48:09
So when I see the up in the quick up and down um, I haven't changed my stuff in a while, but I'm making the ISF a bigger number. makes it less roller coaster.

Scott Benner 48:24
Okay, so a weaker sensitivity factor or a higher number and God bless whoever said like that. And so what takes away so if your roller coaster and just those gentle kind of like ups and downs and ups and downs, that's because probably your ISF is too powerful. And, and and you're and so it's pushing you down, and then the basal is cutting back and then it's popping back up, and then it pushes back down again. Okay, see, that's, that's really valuable. I appreciate that. And what about Max bazel? So where do you see it set like are ardens in bazel and sounds really interesting on loop. So she's like 2.6 during waking hours, 2.6 units an hour during waking hours. For perspective, even though it doesn't matter. Anybody she's 15 she weighs about 130 pounds, she's like five, seven? overnight, she's 1.1 or 1.2. But her bazel is very that much overnight to being awake but her sensitivity factor overnight isn't that much different were weaker than it is during the day and I don't know off the top my head it's only it's a few points off. Yeah, and and when she sleeps in and everything kicks in for like waking hours. That's when I I have a lot of luck with an override I do a minus 30% override and that keeps her stable. So my assumption is is that her nighttime ISF is about 30% lower than her daytime, but that also, but but that doesn't but 30. But but it's more than 50% lower during the night for bazel than it is during the day. So even that 30% doesn't work. I just somehow I've randomly. I've literally lucked into an override that lets her sleep in.

Unknown Speaker 50:17
Oh, that's the first thing in the morning. It's one of the hardest times for me because

Unknown Speaker 50:24
Hazel doesn't go to school yet. And she doesn't always wake up at the same time. And so

Unknown Speaker 50:33
like, as soon as she wakes up her blood glucose is going to start to rise. But not until the minute she wakes up. And so getting the basal set right there is so hard. I'm hoping that will be one thing that's easier when she starts school and in a very routinized

Scott Benner 50:54
I what we do on school days, Arden wakes up. She's usually like this morning, she was one of six but a lot of times she's around 85 or 90 when she wakes up. And I could see if it wasn't for loop. I could just bolus right then I would without compunction bullets a year and a half of insulin when she woke up, just blind Bolus, I would do it. But I can't because if I do that in the loop takes away all the Basal. Like you messed up, buddy. And I'm here. And I don't want to and I don't want to like I try not to like hard like fake carb lie because that messes things up too, right? So I have to wait for a blood sugar to start drifting off. Then when she gets the 128 depending on pops on. It's like, yo, you should be bolusing. And I always want to look at it. Yeah, I know. And then. And so she does that usually on the ride to school. And it'll catch her around 135 or so and bring her back.

Unknown Speaker 51:46
So if she used, you know that she needs like a unit unit a half somewhere like that, something like that.

Scott Benner 51:52
Is that what you said? Yes, absolutely. So should I jacker bazel for an hour right before she wakes up? Probably Yeah, right. Except I always like I'm not killing your kid you make. I'm not giving clinical advice here. Melody, listen at the beginning of the podcast in a very deep voice. I will remind everybody that you and I are not giving anybody advice. I mean, honestly, they're hearing us talk there's no way they would take advice from us anyway. So you were outsmarted by a kid with grapes earlier this Congress.

Unknown Speaker 52:25
It's one of my kids regularly.

Scott Benner 52:29
So So okay, so I think about that, but then I get to the idea of well, then Saturday I'll come and then that's going to be way too much. And what if I don't wake up that early? I'll tell you, I said this with Jenny the other day, on one of the episodes and I'll say it with you. Pump companies or if you know tide pools listening or whoever. You have to give people weekday and weekend. Can Trump Yeah, don't make me remember to get up at six in the morning to stop something that works Monday through Friday.

Unknown Speaker 52:59
Um, what I've heard other people doing is Friday night before they go to bed. They just changed the time on the bazel

Scott Benner 53:07
hundred percent that's still bullish. Yeah, I don't want to have to do that. Like, like, this is such a simple thing. There should be I should be able to set something up for weekdays that started, you know, Sunday night at midnight or something like that. And that, you know, and

Unknown Speaker 53:22
I should be able to read the alarm on the clock that set and then just start kicking the bazel in like an hour prior to that when the alarm goes off. That's

Scott Benner 53:30
genius. I know. Yeah. They really,

Unknown Speaker 53:33
I should be the one designing these things.

Scott Benner 53:35
Yeah. What's what this guy did that he was just making Apps for Education stuff. He doesn't know what he's doing. How did he get this job? Just kidding. I'm sure he knows what he said typo was obviously, you know, doing that stuff. And you and I are having you're having an amazing idea right now, which obviously we can't really implement. But in a perfect world. Imagine that. Imagine if the app said Oh, her alarm set for seven today we should start pushing her but to her bazel insulin up at 630 or six o'clock. I mean, obviously there's that's fraught with pitfalls, but it's in a perfect world scenario. What a genius idea.

Unknown Speaker 54:12
Your phone already has all this information.

Scott Benner 54:14
It knows when you start moving. It knows when you start breaking REM sleep and everything. And you know, it's it definitely knows what you're doing on Facebook.

Unknown Speaker 54:22
That's the whole the whole concept behind the we're not waiting movement. They're like they they were like we have the CGM. We have this pump. Why can't they talk to each other? Yeah. So now we have this phone. And we have and it has all this personal information about it. Why can't it inform the decisions of our insulin delivery?

Scott Benner 54:40
Even a little bit? Yeah, just even just even cuz it's funny as you say that even if ardens bazel rate would move up by 30% an hour before she woke up in the morning. That would be enough to stop that. That initial rise that life rise. You know what I mean? When you open your eyes, you're like I'm awake I through school and everything starts hitting you and you're rushing around and irritated that you're feel tired and it starts pushing your blood sugar up? And yeah, I mean, listen, Something's got to give because, you know, parents, parents are the ones who do it. Normally, I know so many people who set an alarm and get up an hour before their kids to get their kids blood sugar's ready for when they wake up in the morning. And then poor adults don't have that luxury of their mom still sitting behind, you know, at the foot of their bed, trying to wake them up helping them with their health. And so they're putting a completely different problem. So when it's a kid, even if you outsmart it, and there are a million ways to outsmart this stuff, those ways still entail effort and time. And I know it's hard to think of in the moment mount, you know, melody, but that effort that you and I are and other people are putting into things. It beats you up over time, you know what I mean? Like, I am not the same fresh faced, young man, I was before my daughter got diabetes, and there is part of me who wonders what I would look like if diabetes didn't exist, you know, they mean, like, would I go for a walk once in a while? Like, what kind of energy and and you know, like, what would life be without that stress? And that extra stuff to do? And what don't you get accomplished in your life? Because you're thinking about it? And you know, and how can these things help you with that? I listen, I like to, you know, I can play in while I'm talking. That's part of my, my charm. But I love loop. And I think it's stunning. I can't wait for tide pool to get their thing through the FDA. I can't wait for, you know, horizon to come out from Omnipod. I can't wait to see it all. You know, I'm super excited.

Unknown Speaker 56:33
So when, when we were looking at loop for Hazel way, two years ago, there were no other systems on the market. I think the 630 g was available for adults at that time, maybe. But there was nothing. I talked to the Medtronic people in detail. And they're like, there is no way we're going to put a two year old on our pump. At this point, it is not approved.

Unknown Speaker 56:58
Yeah. Yeah. Like, right, it's gonna happen. Our system that's not approved.

Unknown Speaker 57:05
But it's exciting that there's like, tandem and Omni pod and there's so many more that are coming out and and loop works well for us. Different things work for different people. And different things make more sense and in different lifestyles and such, right?

Scott Benner 57:26
Oh, absolutely. Yeah, you got to find what works for you. You can't just I mean, Arden uses a Piedra nobody uses a feature. it you know, as its own. It works so perfectly for her. You know, and so I didn't get to that we use no blog. Just go doctor gave us no log. I was like, yeah, sure, whatever. This is insulin. And then one day someone's like, you know, the problems you're describing. Have you ever considered trying a pager? And I was like, I don't even know what you're talking about? You know, and I tried it. I was like, Oh, this is way better for her. So and I know people have tried it, and it hasn't worked for them.

Unknown Speaker 58:01
Yeah, um, But to answer your question of, like, 10 minutes ago,

Unknown Speaker 58:07
we have our max bazel set at three times what her?

Unknown Speaker 58:13
Normal, highest bazel is okay.

Scott Benner 58:17
And so what is your highest? bazel?

Unknown Speaker 58:20
Um, remember, she's on your 25 deleted in fun. Price. bazel I think is point eight.

Unknown Speaker 58:29
Which would be point two,

Scott Benner 58:33
if it's not, right. So

Unknown Speaker 58:36
her highest basal hurt the periods where she has the highest basal is right when she goes to sleep, and right when she wakes up.

Scott Benner 58:47
Okay, so if you have it because of the because delidded you have it at point eight. So so your max is?

Unknown Speaker 58:56
I think it was right around three, three. Okay. We,

Unknown Speaker 59:00
when when we first started Omni pod, we upped our bezels considerably because like, this isn't working. She needs more insulin with this system. And then I think part of it was the craziness of our summer. And then and so her Max bazel at one point, the her the highest bazel setting she had at one point, I think was one and that's when I moved it up to three and I just haven't lowered it again.

Scott Benner 59:28
Gotcha. And and by not and by not lowering it, lowering it It hasn't hasn't had bad effects on anything. So actually, your Mac your max bazel rate is significantly higher than three times higher than her normal base. Right?

Unknown Speaker 59:41
Like half a unit.

Scott Benner 59:43
Okay, okay. Gotcha. Well, yeah, but it point to a half seems like a lot to me appointed.

Unknown Speaker 59:48
Yeah. But good, but it's diluted half unit,

Scott Benner 59:53
which is really more like hardly anything.

Unknown Speaker 59:56
Yeah, like 1.5 or something. I don't know. Nothing. Hard.

Scott Benner 1:00:00
Kidding, please. That's another reason why I have this podcast because I'm not I don't like the math, and why the loop makes me upset. Because it all it all seems like math.

Unknown Speaker 1:00:11
It is. And

Unknown Speaker 1:00:14
I love that. Diabetes has made me have a slightly different relationship with math than I did before. Like I remember shortly after she was diagnosed, I wanted to write a letter to my high school math teacher and say, and say, remember, when we all ask you when we would need this in life? Now I use it to keep my kid alive. So I guess thanks.

Scott Benner 1:00:36
Appreciate it. Really glad you understood everything. And you taught it to us so well. I still so you know the way I do it before loop. The way I would handle all this had no math in it whatsoever. It was all just vibe and feel and it works. So well. I mentioned it when I talked to Jenny about loop. But Arden said to me earnestly she's like, I don't understand why we're using this loop. You and I are so much better at this. And I was like No, I know. But we need to figure it out. And ironically her Awan sees not changing. You know, even though she's seeing higher blood sugars we're not seeing but that's because we're like purposefully like smashing them. I think if being honest, if I would not readdress spikes, I think Arden's agency would have gone from where it was, which I think was 5.5. When we started, I think it would be seven by now. Well, and now what I'm trying to say is, is that I also think that there are scads of human beings on the planet, who would be incredibly happy with a 781 say, and not just happy, but it would be an incredible improvement for their health.

Unknown Speaker 1:01:45
Yeah, I'm happy with the seven, like six months in. Yeah. And that sounded really condescending. Like, I remember being happy about a seven. Because it our doctor, our endo said with a condition we want her below 8.5. And so the seven was great. Yeah, you're like, I'm one

Scott Benner 1:02:03
and a half under the best, you know, yeah, I see that. I listened. And I don't think people take that as kind of I think people with a nine wish they had a seven I think people who were told eight and a half would be thrilled with a seven. And now you're lower than that. You think I remember a time when I was thrilled with seven? Don't you know? Yeah, I hear what you're saying. You're not hurt anybody's feelings story. People listen to the show are tough. They can take it, they listen to me. So they got a really thick skin. I don't know what we've done here. Naughty. I really don't like what I you know, what I really realized as we were talking. So if I may summarize or pull this together for a second, just to kind of make a bigger point. Your kid is little, and you're doing a terrific job Hurry, when C is great. Her variability is really amazing. All this stuff is going really well. And yet, when I said to you, hey, in this scenario, what would you do to that setting? You were still like, um, well, it right?

Unknown Speaker 1:03:01
I need a little bit more information than right. What we do, what I do is, I look at patterns. If she if she goes slow once at a certain time, then then it could be because I just feel wrong or because she was wearing her sparkly shoes. And she thinks that her sparkly shoes mean that she needs to run more or any other variable, but if she goes low in the same place two or three times, then I'm changing a setting. And so I look for patterns.

Scott Benner 1:03:34
And so the interesting thing to me is that you're charting a course right like you, you're thinking about loop and and your settings, like you're standing on the shore of New York, and you're trying to get to Europe. And so you're plotting and charting and making everything, like decisions ahead of time what I was doing before loop was I got in the boat, and I and I started rowing, okay, and then if there was a storm up front, I would just go around the storm. And then if a pirate ship came, I'd hide. And then like, you know, like I just went and I got over there. The same way you got over there. Like we're both standing in Europe now going, huh? Your Way worked and my way work. My way was more like fluid and kind of flexible and blue. Can't do that loop needs to know. settings it needs to understand. These are the numbers I'm working with. And those numbers need to be right. And if those numbers are wrong, it doesn't just stand up like Oh, no worries. We'll hide from the pirate ship. Now it does. Yeah, yeah.

Unknown Speaker 1:04:34
It's a system that needs the correct information to go forward. Whereas you're human and you're able to bob and

Scott Benner 1:04:42
weave. Yeah, yeah. So do you know anybody that closed loops at night and open loops all day?

Unknown Speaker 1:04:49
I'm sure there are people. I've heard of parents doing that with school. Some

Unknown Speaker 1:04:56
I don't know anyone particular who does that regularly.

Scott Benner 1:05:00
I'll tell you I, in my mind, that would be the best answer for us with the exception of the fact of that when you put loop, when you re close the loop after a day of it being open, it immediately looks and goes, Oh, you've used way more insulin than we need, and then shut your base forever. And it's just like you mother, then. So he, so everything I tried to trick it with.

Unknown Speaker 1:05:24
I'm hearing that live causes you to curse.

Scott Benner 1:05:27
I curse aside of loop. But a loop makes me want to curse more than than normal. It just because every time I feel like I have it outsmarted

Unknown Speaker 1:05:37
it, I'm wrong. Yeah. And I think that, that trying to outsmart it is is maybe counterintuitive. Where you're going wrong? Yeah, but because. But you have to figure out how to work with it. But you've been doing this other system for so long. Yeah. And working so well, that it's kind of like trying to learn to ride a unicycle after you've been riding a bicycle or something. I don't know if that's a bad analogy. But

Scott Benner 1:06:07
all analogies are fun. I think that what I would love to do is put you and that kid in a time machine and send you forward 10 years. And then let you live a week with loop and ask you these questions again. I feel like you'd be like, Oh my god, Scott. Right, huh? Yeah, because with hormones, you mean hormones, and big, bigger appetites? Like like that, like that kind of thing? Because right now, like, I mean, like, honestly, like in carbs, what's the biggest meal? She might eat?

Unknown Speaker 1:06:41
Um, we were at a pool party the other night, and there was pizza and corn on the cob and cookies. And it gave me a slight anxiety attack. And I think it was over 100 grams.

Unknown Speaker 1:06:54
Wow, how did that go? Um,

Unknown Speaker 1:06:59
it. So she ended up having a second cookie, because I wasn't familiar with the kind of pizza that was. Um, yeah. And so I ended up giving too much up front. And then she went low, and ate a second cookie, and then eventually stabilized and was okay through the night. But it was it was rough.

Scott Benner 1:07:22
Yeah. Can I add context? what's, what number is low in your mind?

Unknown Speaker 1:07:26
Um,

Unknown Speaker 1:07:29
well, we needed to drive home and I don't like to put her in the car if she's, if she's below 70. Okay, because I don't like to drive and try to, like, throw candy back at four year old,

Scott Benner 1:07:42
open your mouth stop moving.

Unknown Speaker 1:07:45
And we live in in the Los Angeles area. And so it's not just like, you can pull over on a side street. It's like, one time I was navigating a difficult like going from the five to the 210. I don't know, some numbers. And and I hear the Dexcom alarm. And I'm like, Why is she low? She shouldn't be low right now. And then I look back and she's asleep. And kids fall asleep in the car all the time. And I'm like, Is she asleep? Because she's low? Is she asleep? Because she's didn't take a nap today. And and then I'm like, trying to navigate this highway transition and yelling at her trying to make sure she she will wake up.

Scott Benner 1:08:26
By the way, anyone who's listening who is not imagining melody, whipping candy at her daughter's face trying to hit her open mouth is not allowed to listen anymore. Just shut off. You're not allowed to listen. Because you have to be picturing that right now. She's just got these like little gummy bears. And she loved them. What

Unknown Speaker 1:08:42
is it? dum dums are it's my candy of choice for the car because I can hold the stick and hand it back and mostly reach her

Scott Benner 1:08:50
cuz the lollipop makes it longer. Exactly. Oh my god. Now you all have to be considering this. Also, if none of you have ever driven in Los Angeles don't it's a terrible, awful. Yeah. But Oh, wow. You have painted a picture that I will live with for the rest of my life. Molly, thank you so much. It's you trying to negotiate five lanes of traffic

Unknown Speaker 1:09:11
and can't

Scott Benner 1:09:13
afford four year old in the face with a lollipop. It's great. Anyway, so she got lowered. And then yeah, how high did she end up at that picnic ever?

Unknown Speaker 1:09:27
Um, well, it was time to go and she was in the 60s and so I didn't want to get in the car again. She had a ton of insulin on board because of all the corn on the cob and the pizza. And the pizza was thicker crust than we usually eat and so I think it was hitting slower. So with another cookie, I got her up above 70 and we got home and I don't remember. I'm I think she probably went high later in the night. Then I went back and entered the grant. Like I didn't enter the cookie initially because I didn't want it. I didn't want if she went up high enough, I didn't want loot pushing her back down while we were in the car. And so I went back into the cookie, and got it all leveled out eventually. But it was, this was a birthday party. It was just a pool party in the summer

Scott Benner 1:10:20
party. Is it a good time? It was great. There was a party that was just like, we should have stayed home. I we could have splashed water on the kids, it would have been so much like, Look, guys enter the year. Yay, I go back in your room.

Unknown Speaker 1:10:33
birthday parties are the hardest, especially when there's a pool involved. And pizza. There's always pizza. There's always sweet things. And it's always things that are unfamiliar to me. And so, like, there's so many things. Like we go to blaze all the time, because there's one right beside our house. And I know how to do that pizza.

Scott Benner 1:10:56
blazes a pizza place because when you said California Blaze, I just thought that's where you guys go to smoke weed. Is that not right?

Unknown Speaker 1:11:02
That is legal here. But no.

Unknown Speaker 1:11:06
Blaze is a pizza place. It's like super thin crust. And so it's really easy. Yeah, and, um, but we haven't had enough experience with all the foods of the world for me to know how to dose everything. And even with bloop it's a learning experience worse

Scott Benner 1:11:22
not lesson it's all a learning, I'm not gonna lie to you, I get some meals so incredibly right? With loop that I'm just like, if she would just eat this all the time. I I'd be golden. You know, it's, and I'll tell you what messes me up more than anything right now. It's the, it's the bolusing process and loop. So you know, I told I told you earlier we did like 30 carbs to our start. So she does 30 carbs two hours then doesn't deliver anything. Right? And then bangs back in says 30 carbs, you know, three hours and then it it gives the it gives the suggestion for the entirety of 30 carbs, two hours and 30 carbs throughout? The problem is right in that moment. I want to be able to say to her, how much is it suggesting to you? But we don't have that kind of time. And we're texting, right? Think prior to that, I would say hey, I think we're going to use this much insulin, then I would know what goes in. And so I don't know how much is in her. Because had like today is an example. She would have said to me it once like eight and a half units. And I would have said that's not nearly enough. Right? We should use more. But I can't see that. And because of the way the process. Can you

Unknown Speaker 1:12:28
see it on nightscout when she enters it, like when the Bolus goes through?

Scott Benner 1:12:31
Yes. But it's it's there's a lag. Right, right. And then by the time it pops up, you're like, Alright, well, I here's what I do. I am that might not to the people listening, you might not believe this. I'm an incredibly optimistic person. I seriously Am I believe, and I trust and I really am a hopeful person. And so when I do it, I think well, these carbs are right. And this thing says it, I'm going to let it go and see what happens. And then when 45 minutes later, her blood sugar is like 96. I'm like, you know what? See, I'm being rewarded here for being optimistic and hopeful. And then her blood sugar shoots up and I'm like, why don't I trust that stupid. And so that's sort of my roller coaster ride for my own personal thing. But I really am. You know, when it's working so well for all these hours in a row and it gets a meal. Great. When the next meal comes up, you want to be able to say, All right, let me see what it does here. But I still have that unreasonable expectation in the back of my mind that it's going to fight with bazel. It just doesn't that like you said, the minute it thinks she's got the right amount of insulin for a meal, it takes the bazel completely away. Every time I look, I think if it would just leave that bazel then this would be okay. I've tried temp basals from nightscout.

Unknown Speaker 1:13:49
But the targets are template override.

Scott Benner 1:13:53
Let me pull it out. So I say the right thing. It is type Temp Basal start. And then I try to pick a duration. Right that I want it to go on for, say 30 minutes and I want a jacket way up and I jacket way up. And I do that because I think well if I only do it for 30 minutes, and I double or bazel she's only getting like these 30 minutes, bah bah, bah. And I do all that. And then at some point, it seems like the sometimes the loop just decides, you know what, no, we shouldn't be doing that. And it just shuts. I'm like, Wait, what? Why did I Why can I override it? If you can override me, this feels like being married. Like I feel like I'm an adult I should get to make a decision. But then there's this other thing in my life that's allowed to tell me no, you're stupid, you're wrong. And it's over. And then I don't get to say anything in return. So it won't let me outsmart it. And so opening the loop is the only thing that comes close. But then like I said, when you re close the loop, a lot of times you get high after that. So there's no winning. I have to stop I have to stop using this thing. I've got

Unknown Speaker 1:14:59
yeah or

Unknown Speaker 1:15:01
You, it takes a lot of experimentation to figure out.

Scott Benner 1:15:05
Okay, so good question. How long do I have to be at this before I feel better about this?

Unknown Speaker 1:15:10
Um

Unknown Speaker 1:15:14
How long did it take you to feel good about regular pump therapy?

Scott Benner 1:15:17
Oh, like six years?

Unknown Speaker 1:15:20
About six years? No, I

Scott Benner 1:15:27
think so. So so I am I'm obviously I'm a bit of a different breed in this scenario, right. So I can describe to you that when Arden was first on a pump, like Arden got a pump first, her a one seemed like eight and a half, and I was like, oh, we're gonna get an insulin pump. Everything's gonna be great. So, so her blood sugar went from like her, her he wants he's much like eight and a half like 7.9. I was like, Well, that was not the decrease. I was thinking. decrease. Yeah, so good, whatever.

Unknown Speaker 1:15:57
How old was he when she got a pump?

Scott Benner 1:15:59
Just four and a half. Okay, right. And so then Okay, so then we get to CGM a couple years later. Excuse me while I get a drink. We get to CGM a couple of years later. And I like go from like, languishing in the high sevens to like, all of a sudden, like, you know, lower sevens. And I was like, Oh, look at six point, you know, 7.2, like, really fancy. And at that time, the ideas that I've been blogging about started to kind of coalesce for me, I was like, Oh, my God, all these things are like, in line, like, there was a moment I was like, I have a system. You know what I mean? Like, so I started putting the system into practice a little more, so paying more attention to it. And that was it. Once I put those ideas, the ones I talked about on the podcast into play, 72686765646 boom, just kept falling. Like I couldn't stop her agency from going down. Without without loads, like I was just like, Oh, my God, I figured it out. And so I just sort of started turning up the power on my ideas until I got our agency to where I wanted it to be. I was like, Okay, these steps at this power equal 5.5. Just that that's it. I know what to do. And I went on to describe it to people on the podcast, and then it started working for them. Yeah, and then I'm gonna tell you like, no lie. I started talking to a family last Saturday, so not just this past couple days. So it's been about eight or nine days. And their son's teenage sons graph was a disaster. And at this point, now, it's amazing. It's really stunning. It just from talking to them, she helped me with something. So I helped her with this. Right. So we traded we traded it was like the barter system in the in the Old West. She She got me a water from her well, and I brought over my my cows for milk. And so we traded. And I, I fixed our kids blood sugar and eight days. Well, it's it's amazing, you should say. And so I know that thing so well. That this is just very infuriating. It just it really is. But I see the reason to understand it. Like I know I need to understand this. And so I'm not going to give up. But everyone I talked to, it's like I'm in a bad movie. That's a road. It's like a road trip movie. Like I meet Katie on the Hey, Katie Hill. Now Katie is like the queen of this. And then Katie tells me stuff like, that didn't really help me that much. And then I sit down with Jenny and Jenny tells me some stuff and I go back a little better. And then I was talking to him, like melody is gonna have the ends. No one has the I'm just walking through this road show movie and people I got Yeah, it's over that way. Like what? Yeah, just walked towards that, then.

Unknown Speaker 1:18:41
I think it's a more of a movie of self discovery, where you have to figure out the answers for yourself and no one's gonna hand them to you.

Scott Benner 1:18:46
Yeah, no, I don't. Yeah, I know. But you don't expect them to be handed. But I guess, I guess where my confusion comes in, or irritation? I don't know what you want to call it is that I was able to hand what I was doing to someone else. Right. And I want to meet the person who can hand loop to something. Right, and I haven't found that person yet. Ah.

Unknown Speaker 1:19:11
Um, so your lunch problem where you entered? You knew that she needed more insulin. Right. Right. So in the same way that you learn to, to bolus meals before loop you can learn to bolus meals with loop were like okay, last time we did this, and we put it in as 32 hours 33 hours and the insulin ran out before the carbs did so she needs more insulin. And so you entered is more carbs. Like I learned with the Starbucks sandwich that's it has to be a lot more carbs than I thought it was going to be.

Scott Benner 1:19:55
So I need so I should have lied to this thing about her meal today. And just lied to it about the amount of carbs until I was comfortable with how much insulin she got.

Unknown Speaker 1:20:05
I wouldn't call it line as much as

Unknown Speaker 1:20:09
like there's the face value carbs, and then the how the what the carbs actually do to her blood glucose.

Scott Benner 1:20:19
So I have to consider glycemic load and glycemic index. Yeah, I can't do that.

Unknown Speaker 1:20:25
Yeah.

Scott Benner 1:20:26
Why can't it do that? I'm just kidding. I know why.

Unknown Speaker 1:20:31
elimination technology.

Scott Benner 1:20:34
I understand why I can't. I yeah. So I guess here's, you know, what, maybe now that you, as you say it like that. And I am be trying to be a little introspective. I think the problem is, is that the idea of loop infers the idea of less effort, which I know it doesn't, yeah, like, but it does. It doesn't it doesn't.

Unknown Speaker 1:20:54
Right,

Scott Benner 1:20:55
right. Yeah. Like, how is it? Right, right. You know what it's like, it's like, if it's like, if 12 hours of the day, I had a really great spouse who loved me. And we had this great relationship, and then the other 12 hours a day,

Unknown Speaker 1:21:08
Jen, when the sun came up, yeah.

Scott Benner 1:21:10
Like she was just running around having sex for money. It makes sense, because, because in my 12 hours, whether she's, I think that's it like I think it lulls me into a sense of comfort, overnight, that doesn't exist during the day. And then I have trouble switching gears and going from, I don't have to pay much attention to diabetes to I do have to pay more attention to diabetes. You should be a therapist.

Unknown Speaker 1:21:40
Um, that is an interesting career choice I might consider.

Scott Benner 1:21:45
But no, seriously, you really helped me just now because I that that really is what happens is like, you just keep getting lulled into like, Oh, it's gonna be okay. I don't need to do this anymore. It works. I figured out my settings, like everybody tells me it's about the settings and settings, right? Look how good everything it's like your brain. It's you know what it is? It really is my hopeful nature. It's screwing me. Right? Because I see it work for 610, eight, you know, 12 hours in a row. And I'm like, Oh, yeah, loop works. It's great. I have my settings, right. Trust the settings, do the thing. And then I and then I don't realize that this is this is Jekyll and Hyde. Like it's one thing overnight, it's another thing during the day.

Unknown Speaker 1:22:26
Yeah, the the food is difficult. And yeah. And when it's working, it works so well. And when the food is not entered correctly, or I mean, it's in there correctly, but it doesn't react the same way, then.

Unknown Speaker 1:22:47
It's hard.

Scott Benner 1:22:49
Yeah. lupus, like if Dr. Jekyll was a hooker, I think that's what we figured out today. That I don't want to be.

Unknown Speaker 1:22:55
I don't want to be involved in figuring that out. I don't want my name attached to that.

Scott Benner 1:23:00
Well, I'm putting out the tide pool right now. You need Dr. Jekyll in a skirt. Standing on a street corner. That should be the new logo. I'll reach out to the right people. No, seriously, I really. I seriously think you just helped me. Because I and I and I can see the the confluence of events that lead me to like this roadblock. Because I was involved before. And when I wasn't involved, I didn't need to be involved. Right. Like, I know, I know, some people when they hear about the podcast initially, like Oh, that sounds like a lot of work. And it isn't the beginning. But the real like cool truth of it is, is that after a little while, it stops being any effort whatsoever. Yeah, like, it just works.

Unknown Speaker 1:23:45
I think that's the same.

Unknown Speaker 1:23:48
With loop. It's just another system you have to learn. And, and it sounds like the language you use about it. Like you're tricking it. You're outsmarting it. It sounds like you're fighting with loop.

Scott Benner 1:24:01
I am

Unknown Speaker 1:24:02
and yes. And it's you.

Scott Benner 1:24:08
I need I need no rules. No, I need new rules. Like Like, like when I sit here and I think about this stuff. I tell people on the podcast like you know, you'd rather be high than low. Don't you know, don't accept blood sugars above like I'd say these things like t shirt slogans at this point, right? And but they work like if you keep these things in your mind, it works and you can kind of overpower diabetes. For the most part. I think that I need to step back from what I'm doing from loop and look at my troubled moments and figure out if I were to do this in this moment, this would stop this and then give it a give it a slogan that makes me remember that moment. I know that really is easy, but I think that's what I need. I need to stop at lunchtime and say, Okay, this is like a high carb scenario. We're going to, we're going to like you know, decide that this meals on the other side of the glycemic index, it's on the higher And we're just going to put, you know, attacks on it. And, and add more, you know? Yeah. Melody. How's it feel to save a life? Because you've just done?

Unknown Speaker 1:25:11
Oh, I'm

Scott Benner 1:25:13
gonna put this on your resume once saved a man.

Unknown Speaker 1:25:19
Yeah, I'm

Unknown Speaker 1:25:23
still too early for me to have woody come back.

Scott Benner 1:25:25
You're fine. It is early in the morning. You're doing a very nice thing. It's so it's, it's like 889 o'clock here you are 915 I can't I kept you on way longer than I said to. Are you completely unhappy that you did this? Are you okay with this? I think I'm okay.

Unknown Speaker 1:25:42
Um, I will probably spend the next 48 hours thinking back to all the things I said and how I should have said them differently.

Scott Benner 1:25:49
That's no big deal. You're just having the same response that people have after dating me. It's over and you're like, I don't think I should have done that. probably right. And so, but it's too late. Now I have the recording. No, I'm just No, but I appreciate I think this kind of like rambley conversation is going to be one of them that I look back on, I think like this pulled me through because I have seriously because having too much of a like, I've tried having somebody come on and tell me like, this is how it works. But it's their perspective on loop. And why I need to figure out my perspective on it.

Unknown Speaker 1:26:28
You have to figure out how to fit the way your brain works in with figuring out the settings. And I have a good friend who has I'm gonna say it wrong. Just calcula it's like dyslexia, but with math, okay. And she's always saying, I don't know what I would do if my kid had diabetes. There's way too much math. I could never do that.

Unknown Speaker 1:26:54
Like, well, you figure it out. I figure things out.

Scott Benner 1:26:57
I'm looking it up right now. discount, by the way. First of all, he said it 100% right, it looks like this calcula severe difficulty and making arithmetic metathetical that Earth pathetical. What the heck calculations as a result of a brain disorder?

Unknown Speaker 1:27:13
Hmm. It's like dyslexia, generally, except for with numbers instead of numbers.

Scott Benner 1:27:19
Yeah, that that person's kid can't get diabetes. Oh, she'll have to return the kid. If that happens.

Unknown Speaker 1:27:26
You just know you can figure it out. I mean,

Unknown Speaker 1:27:31
I think everybody I think so. I think with accommodations, you can figure things out. It's like,

Scott Benner 1:27:37
yeah, I can tell you, your friend who I you know, I don't wish any bad on her family at all. I think that she is a she is the kind of person who hears my podcast and goes, this makes complete sense to me.

Unknown Speaker 1:27:50
Because it's not about the numbers. Right?

Scott Benner 1:27:52
Right. Yeah, see? She'd be fine. All right, I take it back. She'd be okay. Thank you very much for doing this. I want you to know that it doesn't go up right away. So you can you can, you know,

Unknown Speaker 1:28:05
cried about it for longer

Scott Benner 1:28:06
or no, just let me know that you really feel like you said something stupid. At one point. You're like, I really wish that wasn't in there. But I feel like you did a great job. When I edited I listened very closely to what's going back. You know, don't let anybody make a fool of themselves or anything like that. No, of course, but what am I trying to do? I'm trying to help people with diabetes, not not embarrass you. I'm embarrassing myself. I think that's enough embarrassment for the whole situation. I but I seriously think you really helped me just now. And I hope to be able to report back to you soon that I figured out a way to work more harmoniously with loop.

Unknown Speaker 1:28:40
Oh, I hope so. And

Unknown Speaker 1:28:44
yeah, and for for Arden sake. How does she feel about it? Oh,

Scott Benner 1:28:49
Arden doesn't want to do it. But Arden spoiled. Arden lived the life where she didn't really have diabetes.

Unknown Speaker 1:28:57
When and you were just doing everything? Well, like off camera.

Scott Benner 1:28:59
Yeah, we know we do it together. But that's such a small part of our day. So it really is I do believe true that most of the people who hear the podcast but don't follow along with trying it themselves, probably really don't believe me. But I don't think that prior to loop I thought about diabetes more than about six or eight minutes in total every 24 hours.

Unknown Speaker 1:29:20
Like you're recording a podcast about diabetes.

Scott Benner 1:29:22
Yes, that's a different thing. I take that out. But yeah, but so I really like she and I spent no time thinking about it now. With loop. I've been irritated and thinking about loop for the last two hours. I put more thought into diabetes today than I would have in a week without loop.

Unknown Speaker 1:29:37
Yeah. And so Matt always says that when when you start a new job, there's like six months of feeling like you're completely out of your element because you're learning new system new everything. And I think when learning a new diabetes management system is kind of the same because It makes you feel like all the things you already knew are not working in the situation.

Scott Benner 1:30:09
Yeah, yeah. It's everything I thought was right about the world I'm wrong about now. And that's it. Like, I just everything I thought was right is wrong, but I can learn this. And that is where I feel like that's where I'm at right now. I know I can. I know I can learn it. And I do have a little extra pressure because I feel like I need to learn it in a way where I can explain it. But I know I can learn it. I and I know that my time with it isn't as long as it probably feels. Although it's, you know, May, June, July, August, September. I'm getting there at six months now. But But the truth is, I'm way better at it today than I was three months ago. So it's coming. It just, it just is really a it's frustrating. To feel like it's fighting with you.

Unknown Speaker 1:30:51
Yeah, you know?

Unknown Speaker 1:30:54
Yeah, there are many moments where, where I'm, I'm not going to curse, but I do. And I'm like, What are you doing, Lou? And then I look and say, Oh, I didn't introduce carbs correctly, right? Or, Oh, I forgot to include the sugar in that car. pout, gotcha.

Scott Benner 1:31:14
I'm still very bad at the, you know, when you when you you know, tell it Hey, it's this is 20 carbs. And then later, it doesn't agree. Yeah, like, I still don't completely have that. I can't wrap that around. Like whatever it is, I need to wrap it around so I can understand it. Like if I tell it 20 and it says no. 17. Does that mean that at some point, it had to cut away more insulin because it didn't hit like 20 carbs? Or? Like you don't mean like we're What about when I tell it? 20 it says no, it was 30? Like I just I don't know. I don't know why it seems simple yet. When I look at it, I can't make sense of it. Um,

Unknown Speaker 1:31:55
yeah, then

Unknown Speaker 1:31:59
I

Unknown Speaker 1:32:02
I got a text in the middle of that from our nanny with Hazel.

Unknown Speaker 1:32:08
I'm good. But I missed the last half of your Senate.

Scott Benner 1:32:11
What I was gonna say what I'm saying is, is that when you tell some tell the loop Hey, this is 20 carbs. And later it tells you Oh, yeah, what was really 15? Right? Oh, my God, what does it mean when it says that?

Unknown Speaker 1:32:23
But the way your body absorbed it and the amount of insulin that was needed, matched 15 as opposed to 20?

Scott Benner 1:32:31
And what about the opposite? What if it says no 25?

Unknown Speaker 1:32:35
Then

Unknown Speaker 1:32:38
it's like saying, we used enough that your blood glucose data shows that you needed 25 grams worth of insulin.

Scott Benner 1:32:46
But you said 20

Unknown Speaker 1:32:47
Yeah, so it absorbs and, and so that's a really good thing to look at when you're when you're retrospectively looking at meals to see, okay, we just this is this, but it says, I don't this is 30. But it says that it absorbed like 45. So the next time she has this meal, he should do that. Do 45 gotcha. And, and it tells how long like the amount of time to. So that's honestly how we figured out our favorite pizza. Yeah. And now we eat pizza probably too often, partially because it's delicious. And partially because we know exactly how to Bolus and I know, I'm not going to be correcting this if we pizza. Nice.

Scott Benner 1:33:30
No, I mean, I would think I as you were saying that I thought I should be using that as a way to like measure load, like the load of the glycine, because I'm getting the Listen, I don't count carbs, but I can I can swag carbs pretty well. So I'm not like 30 carbs off when I make a decision, but that there is the impact that I'm off on sometimes. So I have to come up with a scenario where I understand what, how much extra carbs, covers impact of more carb, heavy food, or more dense food with more of a load. Okay. All right. I'm gonna let you off the hook. Now. You've done a lot for me today. I appreciate it. I don't know if anybody listening will get anything out of it. But I've gotten a lot out of it. So thank you very much. I really appreciate you walk away. It's kind of fun. Hey, you had fun. That's great. I can't tell because you're so West Coast and I'm east coast. I can't tell if you hate me or you were having a good

Unknown Speaker 1:34:25
Oh, mostly a good time.

Scott Benner 1:34:28
Ironically. I don't care. I just I can't tell. I'm just kidding. You were really terrific. Thank you so much for doing this.

Unknown Speaker 1:34:34
Thank you Have a good day. That's a

Scott Benner 1:34:37
huge thanks to melody for coming on the show and sharing what she's learned about the loop algorithm right. She helped me immensely as you heard. Today, I am much more adept at using loop. And it is very important to say that when this conversation was recorded, there was a difference. version of loop available. It has been updated since then. And the update has been a piece of how I've gotten to where you're going to hear next. You know, the next time I talk about looping, when I'm all like, yeah, I'm so good at this. It'll be because of what melody helped me with all the things I learned before all the people who helped me the time that we put into figuring it out, and of course, the hard work of the people who work on the algorithm. I want to thank very much the Contour Next One blood glucose meter, please go to Contour Next one.com click on the links in the show notes, click on the links at Juicebox podcast.com. And go get yourself a Contour. Next One blood glucose meter the thing just flat out rocks, and of course, touched by type one.org. Check them out today. Take a minute touched by type one.org go look at what they're doing. I don't usually give a heads up about future episodes. But later this week, another after dark episode is coming up. It's lovely. It is just really amazing. I am stunned by the open and honest nature of some of the people who come on this podcast. So there'll be another after dark episode coming up this week. And it's about trauma and addiction. You really should not miss it.

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#303 Do Hard Things

For Adam and Alec

Anne speaks to Scott about her sons Adam and Alec, living with tragedy, type 1 diabetes and so much more.

+ Click for EPISODE TRANSCRIPT

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello, everyone, welcome to Episode 303 of the Juicebox Podcast. Today's episode is titled do hard things. And it's with an you're gonna get to know and in a second. Today's episode is a little, a little different than some of the other ones, in that it will handle the idea of tragedy, and we'll be having conversations about loss. Maybe you don't listen with your kids, maybe you want to, you should probably make that decision.

I don't even know how to talk about this. So let me do this. There's not going to be ads the way you think about it in this episode, I just can't i can't bring myself to put them in. But I do need to mention the sponsor. So this episode of The Juicebox Podcast is sponsored by Omni pod makers of the only tubeless insulin pump in the world. It is the insulin pump that my daughter has been using since she was four years old. And she is 15. It is wonderful. And on the pod would be thrilled to send you a free no obligation demo of the Omni pod right now, all you have to do is go to my Omni pod.com forward slash juice box and get that going, they'll ship it right to your house, you can try it on and wear it and see what you think. The show is also sponsored by the dexcom g six continuous glucose monitor Arden has been wearing the dexcom forever and ever. And we use the data that comes back from Dexcom for so many things. Just a few of them are insulin dosing, understanding when to eat how to eat seeing the speed and direction of your blood sugar. Knowing if you're falling it has predictive low alerts, it'll tell you that in the future, I expect your blood sugar to be under 55. It also has a share feature. So that the people who love you can see your blood sugar when you're not with them. So whether that's your child, or your sister, or somebody else that you care about, the user can share their data with up to 10 people. It's amazing. podcast is also sponsored by the Contour Next One blood glucose meter, this is ardens glucose meter, which is absolutely spectacular top of the world for accuracy. very portable without being too small. test strips allow you to take a second shot just in case you you know you go in for blood and don't quite get it the first time without ruining the test strips, you save money there. And there's a wonderful app you can get for your Android or iPhone, that pairs to the meter with Bluetooth to give you even more information to help you make good decisions. You can take a look at that at Contour Next one.com. And of course the podcast is sponsored by touched by type one. I'll tell you more about all the sponsors next week. But for now, check them out at touched by type one.org. It's dancing for diabetes, they changed their name, and you really should go check them out. I want to take one brief second to thank the good people who sponsor this podcast. Because without them, you wouldn't get stories like this.

Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And to always consult a physician before becoming bold with insulin or making any changes to your health care plan.

I'm not sure how long this is gonna go before you make me cry, but let's find out together but I'm hoping, hoping No.

Unknown Speaker 3:47
Well, if I can get through it without crying.

Scott Benner 3:49
Hundred percent think we're both crying. But so just so you can so that you can be aware of what I'm waiting for. I'm really, I don't even know what to say about how how amazed I am that you are doing this. I usually start the shows by having people just introduce themselves.

Anne 4:07
Okay, my name is Anne.

Scott Benner 4:11
Okay, listen. So and I received an email from you. Probably going back to the summer of 2019 I think. And I'm, you know, your email started off so much like everyone else's. And you know, I'm sitting somewhere, you know, doing something and like, Oh, I get a note, I look at it, I start reading it. I'm like, Oh, this is a nice note. It's gonna be about a nice thing. And it was about a really nice thing, right up until it sort of wasn't and then my wife looked over at me and said, Are you okay? And I said, I just got an email. I don't know how to respond to it. So I guess let's start like this.

Unknown Speaker 4:59
You're mad

Unknown Speaker 5:01
I am okay.

Scott Benner 5:03
You have children,

Anne 5:05
three amazing boys, the youngest of which was diagnosed with Type One Diabetes in 2013.

Scott Benner 5:13
And that's Adam. Adam. Yes. So Adam was diagnosed in 2013. How old was he then?

Anne 5:19
He was eight years old.

Scott Benner 5:21
Okay. So why don't we just talk about his diagnosis? How did it go?

Anne 5:28
Sure. Well, we looking back on it. We think that it had maybe been going on for a while there were many. I mean, as is very commonly the story that were signs that in hindsight, we thought, Hmm, I wonder how long this had been going on. The weekend that we took him, the Monday that we took him to the doctor followed a weekend in which he had run in a parade. The there's a community prayed that we have the run was kind of a kickoff to the parade. And we would always have the boys run. It's about a mile run. And so all the boys did it. We met them at the finish line. And when Adam got to the finish line, he did the one bless his heart. But he couldn't he kind of he didn't collapse. He just sat down and he had a really hard time getting up.

Scott Benner 6:24
So then your other two sons?

Anne 6:26
Oh, yes. Well, the others two were just, you know, excited. They want to go see the parade. And Adam was just, he couldn't get up. So my husband and I looked at each other. My husband actually hoisted him onto his shoulders and ended up carrying him to our next point. But Adam was, yeah, we just it didn't we knew that it something didn't seem right. And so that was a Saturday, Monday, my husband, and I had decided that we were going to take him in just for a checkup. And our amazing pediatrician, I think, listened to some of the things that had been going on and immediately had him did a did a urine test to detected sugar in the urine, and at that very moment diagnosed him with Type One Diabetes.

Scott Benner 7:16
Prior to that, how long do you think you were seeing symptoms?

Anne 7:20
Well, it's really funny, because so at this was Adam second grade year, and earlier in the year, I want to say the fall, the his teacher had asked me, he said, is Adam getting enough sleep? He seems really tired. And, you know, I thought, wow. And apparently the teacher at one point had a conversation with Adam and Adam said, at the time, all three boys were sharing a room, or we had four bedrooms in the house. The boys shared one of the downstairs bedrooms, we had one of the downstairs bedrooms, and the upstairs we were using for a guest room in an office. And Adam told the teacher he said, Yeah, my brother's kicked me up talking at night. And as soon as so the teacher relayed this to me, and I immediately, I mean, within a very short time following that conversation, we ended up doing away with the guest room in the office, moved both of those things to another location and had each of the boys had their own rooms. So which I just thought was interesting. There was there were also a few instances of at Adam having that year, some unexplained stomach pain. And I don't know whether that was related to the the type one or not, but we took him in a few times. It's the point where he was literally crying and doubling over and vomiting. He was diagnosed and we took him to the ER at one point with constipation. And I don't know whether that was a sign or whether that was, I

Scott Benner 8:57
don't know, hard to look back and figure it out as it.

Anne 8:59
It is, it is, but it was early on in his second grade year that I think, you know, as far as our look back, when we kind of realized that probably was happening for a while longer. Wow,

Scott Benner 9:09
that's a that's crazy. So how did the the first couple of you know days and weeks go every year diagnosed? How did you find the transition?

Anne 9:21
Ah, we were in shock.

His diagnosis day, of course, was what we used to think of as the worst day of our lives. It was towards he was diagnosed in May. And it was towards the end of his second grade year. And so in my mind, I thought, okay, I'm, I thought I would go to his school every day because the school wasn't going to do any of his shots. So I thought I'll go to school every day and at lunch or you know, just be on call. I didn't live very far away and it was would have been easy for me to just pop up and do all the shots and so, and I you know, we thought okay, over the summer, we'll kind have transitioned him into doing this on his own. We had an amazing school nurse, who, at one point had bribed Adam

to do his shots on his own, unbeknownst to me,

he ended up actually within, I want to say the first week back to school following the diagnosis, he ended up giving himself his own shots. And learning how to do it much more quickly than I had anticipated. And, you know, bless his heart, he just, he stepped up, and he did what he needed to do. And so, you know, that that, obviously, it was a time of shock, I guess, to a little bit, but we transitioned fairly, fairly well, as far as you know, getting him to do the basics on his own.

Scott Benner 10:55
It's interesting, isn't it, that a person who's a little disassociated from the whole thing is he, it's a much easier path for them to say, Look, just give yourself the shot. And you're probably trying to protect him from whatever it is you're scared of, in your mind, or, you know, like, make him grow up too fast, or blah, blah, whatever it is, we try to protect our kids from, I guess, it's very cool that a nurse was able to just say, look, you know, you're probably gonna have to do this. So let's do it.

Anne 11:21
Yeah, yeah. Yeah, we greatly appreciate it that support right? Did you

Unknown Speaker 11:25
guys have

Scott Benner 11:28
Did you transition to a pump at any point, or glucose monitoring or anything like that.

Anne 11:34
Um, the glucose monitor and pump actually did not happen until after I started listening to your podcast in 2016. We had ordered a dex calm in following the highest agency that I'd ever we'd ever had with him in I want to say it was December of 2015. And we, we didn't have great support from his provider, the providers office is actually two hours away, where it was two hours away from the community that we were living in at the time. And so there wasn't a really, there wasn't great support there. They had briefly they had mentioned to it following the the one visit that we gone into where they told us the Adams agency, December of 2015, ish was, I think, 9.5. And I remember feeling shocked when I heard that

Scott Benner 12:33
was that a jump up had been lower, and it jumped on you.

Anne 12:36
It had jumped, it had jumped and there were, I think a few things that had led up to the jump. But yeah, it had jumped it was higher than it ever been. And it was kind of an afterthought. It wasn't even the provider herself. It was a one of the the nurse that was kind of checking us out of that appointment. She mentioned kind of as an afterthought, she's like, Well, you know, there is, you know, this continuous glucose monitor that you could try. And I just said, We I'm willing to do anything at this point. And so we ordered the dexcom, they shipped it to us. And I remember thinking at the time, I wish I had read so much more. I mean, again, hindsight, but I remember thinking at the time, gosh, this is gonna be something that actually sticks up, I'm him, it goes into his body, I don't want to, I didn't feel comfortable. Going through the process of putting it on him myself. I and so I, we received it in December of 2015. I waited until April of 2016 when I knew I could get an appointment and drive across the mountains without, you know, worrying about snow and that roads. I waited until I could get an appointment at at the Children's Hospital to be able to do a class to learn how to do it with someone else right there holding my hand.

So I had gold sitting

on a shelf for five months.

Scott Benner 14:01
You know, there's been a number of people on here who have talked about their insulin pumps being in drawers or their CGM still in the boxes. I don't think that's incredibly uncommon. Yeah. But you look back and you think, well, geez, get out. I'm interested. I'm interested in through this first number of years, where you feel like you're doing it's a very common thing for people. They feel like they're doing well, right, because people are taking their shots. They're counting their carbs, and but they're not having the results they're looking for. But they don't feel like I can't. I always have trouble making sense of that feeling of Oh, we were doing great. And like I was talking to somebody the other day who said, you know, my eight one sees nine but my doctor always tells me I'm doing great and I wonder like there's a disconnect there for me, but I do think they're doing great in one respect. I don't know why the sentence isn't usually Hey, you're doing great you're doing the things you were asking you to do and everything but here's the What we could try to do blah, blah, blah to move forward? Like, wonder why that part never comes, you know?

Anne 15:06
Yeah, the parts that always seem to come up in the visits with Aaron p would be, you know, meeting with her looking back, okay, six weeks ago from today at 415. Why do you think we have this spike? And I, you know, I just

Unknown Speaker 15:22
I don't know.

Anne 15:24
Yeah, um, yeah, I

Scott Benner 15:27
think it's too retrospective. Maybe Maybe it's they just don't have enough? I don't know, they're not able to make that. That moment to moment decision.

Unknown Speaker 15:35
Right. Right.

Scott Benner 15:36
All right. All right. And have we have we gotten to the part where we're gonna start talking about why you're on the podcast? I think? I think we have, I think we are. So you find the you find the podcast you give? I'm assuming that gives you kind of the courage to put the Dexcom on him. Can you tell me a little bit about that?

Anne 15:56
Yes. So I had taken the boys during our spring break, to visit my brother in Nebraska. And my sister in law kept, kept saying, I heard on this podcast, and she would go in and tell me something kind of fun. And she kept saying that over and over and over and I was fine. Like, okay, Jessica, what's the deal with your podcasts? And she showed me how to look at podcasts on my phone. And so it was that spring break trip where I'm like, Hi, I wonder if there's any podcasts on type one diabetes. And I immediately found yours just as the first podcast that I set up on my phone. I listened to dozens of hours. And this was beginning to mid April. And I knew I had the Dexcom sitting on our home. I knew that we had an appointment at the end of April to go to the Children's Hospital.

Take a class and help get that set up.

Unknown Speaker 16:49
We

Anne 16:52
Yeah, I mean, we got it set up. I got him set up with the Dexcom

continued to listen to your podcast.

I guess. Sorry. I'm getting teary already thinking about

Scott Benner 17:06
I'm, I feel like I'm gonna vomit if it makes you feel any better. So I've never been nervous making this podcast one time. So I'll help you a little bit. So you, you Adams at once. He was like up in the nines there. And you got some you listen to podcasts for a while you started getting as a one t coming down. And it was really a turnaround for him. His health was was moving in the right direction. And you felt excited about it. And And And how long did did you have that feeling? Like how long were you able to live in that that space?

Unknown Speaker 17:43
so

Anne 17:45
late April of 2016, we got him set up with the decks calm. And for the next several months, we had the most success that we had ever had. Since the time of its diagnosis. I came to be able to figure out things that you would talk about on your podcast like oh, when he's playing competitive sports, his adrenaline is skyrocketing, and hence his blood sugar's would tend to go up too, I'd start identifying things like that I started playing with his basal insulin, you know, being able to just make tweaks to give him the best shot for success. We actually ordered an omni pod as well, that came in late October. And so he had been using both the Dexcom and the Omnipod for

about two months.

And we had his next follow up into appointment on December 19th, which was the first day of Christmas break. We lived 30 minutes away from the office where we were going to be seen by the doctor is actually a telemed appointment because the doctor was in a children's hospital in Seattle.

So on December 19 we

got in the car. It was supposed to just be Adam and myself. But I worked in the community that the appointment was in and so the plan was Adams going to spend the day with his cousins. And my middle son Alec had begged and begged and begged to come with us. He the cousin Dave, the cousins are very close. I relented, I let Adam or Alec come with us as well. So I had Alec and Adam in the car with me. We were in route to his endo appointment. I was very excited. I knew that his a Wednesday we had had it checked in September it had dropped I was looking forward to seeing yet another job now that he was on both the Dexcom and the Omni pod, we are having great success. We did not make it to the appointment. The last thing that I remember is, we were driving and my car all of a sudden was not going straight. One of the boys asked me something. I have no memory of anything until I woke up in the hospital. I don't even know what day of the week it was. And I remember somebody telling me that we'd been in an accident, and the boys had not made it.

Scott Benner 20:36
Sorry. Um, how long? Was it between the accident when you woke up?

Anne 20:44
And the accident took place on a Monday and I don't, I have no memory of being in the accident. I have no memory of being picked up by an ambulance and being taken to the hospital. I think that my family said that they had tried to tell me several times I you know, obviously they had me pretty well medicated.

I think it was

the next day. I honestly don't know, I honestly don't know how long it was. That's just the first memory that I have. After the boys mark with me

Scott Benner 21:19
anymore. What were your injuries, like?

Anne 21:28
The I had fractures basically from head to toe, but they were all able to heal on their own, they didn't have to have surgery or anything like that I had a brain bleed, and

just very sore.

I was in the hospital for about a week, a little over a week. But everything, you know, everything healed up. And there was some nerve damage to my face. I still the left side of my face is still a little bit numb. But

nothing in compared to you know,

Scott Benner 22:04
I? I don't know how to talk about it with you. I I feel like what, what happened to you is probably I mean, it's got to be one of the worst things that could happen to a person, right? I don't, I can't as a person who has children, I I'm hard pressed to imagine something worse. I don't know, how you sent me that email or, or how you found the courage to come on and want to talk about this, I thought that it was a beautiful idea to talk about Adam and Alec a little bit and, you know, try to try to remember and give perspective to to that sort of thing. So I'd like to do as much of that as you're comfortable with. And if you can't answer a question, just say pass, and and it will keep going. I guess it's been it's been over three years now. Is that right?

Anne 23:01
Yes. It was three years this past December?

Scott Benner 23:04
Does it has it so far lessened in? In in? I'm assuming how painful it is? Does that get better?

Anne 23:16
Um, do you know grief, I think is just a very interesting thing.

Unknown Speaker 23:23
Um,

Anne 23:25
I cry just about every day still. Not to the point where I can't function. I, you know, I I'm fortunate I have a job that I really love. It's good to be able to throw my mental energies into something that I'm passionate about and that I enjoy doing. But, you know, has it lessened? In a way it seems like it was still just yesterday that this happened. There are moments where I just feel overcome. And I think the day that I sent you that email I just was having a moment and I but I just was overwhelmingly grateful as I was thinking about it. I thought you know, Adam, we struggled with managing his diabetes, you know, up until April of 2016, I guess. But I just so so, so grateful for the information that I was able to get through your podcast that I felt helped us give him the best chance at living in the best way possible for what we had no idea at the time would be his last few months of life. So does it get easier? No has it lessened? I feel like I'm moving forward without as much shock maybe not as much in a fog. But there are still moments where you know, I think and I think any parent who's lost a child would say you know and I anticipate this is going to be going on for the rest of my life. Where you just, you're overcome, you're overcome. How could this happen?

Scott Benner 25:06
You know, my son leaves for college. And for weeks and weeks after he leaves my wife and I will kind of comment to each other. It's hard to put into words, right. But the, the house feels different. I guess it's the way people put it. But there's there's a palatable sometimes it feels like air pressure to me, or I don't know how to describe how being in a space where he is, or has been recently feels different than being in a space where he hasn't been recently. And and it's I'm assuming that's as close as I can come to understanding what you're saying. You know, can I ask your you have a son, a third son? Who's with you still?

Anne 25:56
Yes, Andy, was not in the car at the time. And I think the only reason that he didn't come today is because he had basketball practice that day. He is now he was 15. When our accident happened, he's now 18. And he's a senior in high school. And so he will be going off to college. In a number of months,

Scott Benner 26:16
with you tied to his belt, I'm assuming

Unknown Speaker 26:19
a three foot rope, right?

Unknown Speaker 26:22
That lady behind you, Andy? Oh, it's my mom. And

Scott Benner 26:26
she'll be in class today. Yeah, how? I guess, you know, how did it impact him?

Anne 26:37
Andy is the most even keeled child, I think that exists. He obviously it, you know, going from a crazy, fun house full of energy to being the only one. It difficult, difficult for him, obviously. But he is the one that I feel like it's a strength, in a way it gives me strength.

You know, it, he's.

And I think I look back on it too. And I think, gosh, you know, the first couple years especially, I was so wrapped up in my own grief, it took me a while to realize I've, I need to be more present for him. I didn't really know how to do that. He has been nothing but gracious in dealing with my shortcomings through that whole process. But he is continuing on. And he knows that both of his brothers have left a legacy. And he is very intentional about wanting to live to honor those legacies. And so I just I couldn't be prouder of who he is, and who he's become. It's, you know, something that has happened to him. But he's written you know, in some of his personal statements for college essays and things like that, that it's not something that defines him. It's it's always going to be a part of his story, but it's not. He's he's not victimized. He obviously is going to be living with a big gaping hole for the rest of his life. But it's not anything that defines him.

Scott Benner 28:25
So the three of you are supporting each other. Because each of you has a different tragedy. Really, it's it's as I'm sitting here thinking about it. He lost his brothers and then contact with you for a while probably. There's just an overall change in what his life is. But then at the same time, you're dealing with losing Adam and Alec, and you're dealing with I'm assuming surviving an accident that they were lost in. But that's got to be has to weigh on you as well. Does it not?

Anne 28:59
Yeah, yeah, absolutely does.

Scott Benner 29:03
Yeah. I don't know if there's more to that question. It just it's occurring to me, as you're talking that, you know, that's got to be the next thought, which is, you know, I mean, it's survivor's guilt, right. Like, it's why me, why them not me, you know, etc. Like that? Probably, yes. That's a question that plagues me has plagued me every day for the last three plus years. It's just random. Do you seek have you in the past or are you now do you talk to somebody? Or do you kind of go back to your family for that support? How do you handle that?

Unknown Speaker 29:32
Yeah, I

Anne 29:36
did do some counseling for the first two years.

You know,

I think that that kind of ran its course I have some amazing friends who continue to be just a wonderful support.

Scott Benner 29:56
Can I ask you, before you tell me about your journal. Is it just honestly, something that no one else can really understand? Except someone who's been through it? Yes. Is that what you found through the counseling? That's kind of what I got in your paws, like, what am I talk to a therapist about? You know, you know, because I find myself in the same situation right now, like, I have nothing contextually, to compare to what you're talking about nothing. And so I would think that, trying to have that conversation with people who don't have that context, must feel frustrating and fruitless. And, you know, it's lovely to think that everything in world in the world can be can be explained away or gotten through or coped with, but I mean, I don't know, like, I I follow. I don't know if you've ever heard the episode with a woman named Linda hopper who came on years ago? And yes, and her her son passed away at school from, you know, and I follow her on Facebook still. And she's very proactive about remembering her son. And at the same time, I just feel like this is this is something that fundamentally changes your perspective on life. And I don't see anything else that could bend you back to where you were before? I don't and I can't tell that that's a bad thing. Or not? I don't actually think it is. I think it's maybe sad, right from the outside. But for you, I'm assuming you're not looking to forget your kids. And isn't that what Feeling better? Feels like?

Anne 31:44
Yeah, and that's funny, because I, I've always thought, I mean, since this happened, I don't want to feel better. You know, it's not even anything that I can really say, I need to make, I need to be able to make sense of this. There's, there's nothing to be made sense of. I, you know, that that that was part of what I kind of thought as I was going through the counseling is, you know, what, what is the point? I just need to be able to put one foot in front of the other. I want to live well, I want to live in such a way that honors their memories. That would honor them that would make them proud. But really there? You're absolutely right. It's possible to for I think, to understand this, I mean, you you think somebody that this has never happened to, you know, you think oh, this is the worst thing imaginable. And it is. You know, I I think that sometimes, you know, people will look at me, and they'll be like, Oh, you're so strong are so courageous. And I don't have a choice. I mean, I. But I think it's, I have come to know, more parents than I would like to know, who have experienced this type of thing. And I think there's just an instant bond that you have with people who have also lost a child or lost children. There's just you relate to them on a just a level that, you know, people other people are not going to be able to understand. Other people can sympathize.

Scott Benner 33:27
Go ahead. Does it feel like you're parenting their memories?

Anne 33:33
That's a great question.

Scott Benner 33:35
You know, you mean, like, I guess, from my perspective, I feel like I'm really connected parent, I really enjoy having children. And so when they're with me, or they're not with me, I'm always in some sort of a fluctuation of helping them or watching them for what they need next, and trying to figure out how to help that. Or, you know, and no matter what that means, if it's just listening or being there saying something or actually interjecting, like whatever it ends up being, I feel like that keeps happening. And when Cole went to college, I thought maybe that would happen less, but it doesn't. And I can't imagine I'm going to feel any differently when he moves out. Or that I would feel any differently if he passed away. I can't imagine that I would feel any differently about that. And it just feels like that's what you should be doing right like shepherding their, their legacy and, and still being parents to them. I don't know what else my life is for at this point. It's a very strange thing. I enjoy the things that I enjoy very much. But I don't know how I would feel if you could somehow flip a switch. Take me Take me being my kids parents away from me, but leave me the memory of my kids. I'm not sure what I would do with that. So I think that whatever, get your one foot in front of the next one is valuable. I think that you should 100% live a really long life with as much happiness as you can find. And be a terrific parent to Andy and, and I'm assuming your husband's together.

Unknown Speaker 35:23
Yeah, and

Scott Benner 35:24
and be, you know, be in that love in that relationship and all that other stuff but I mean, I would think that there'd be a way to live well, even. But I don't think there'd be a way to live. Like forgetting. You know what I mean? Like I I've had a lot of terrible things happen to me that I don't think about anymore. But I don't think this one could be one of them. I'm By the way, not for nothing, but how much better this am I then your therapist was right.

Unknown Speaker 35:52
I was gonna say you should go into grief counseling or something.

Scott Benner 35:55
Like, I should at least get 40 bucks for this. I just found myself thinking. And I, by the way, and found a way to put a laugh in the middle of this episode, which really is a bigger skill.

Unknown Speaker 36:06
That was that was

Unknown Speaker 36:08
that was amazing. I'm gonna blow my nose now. There you go.

Scott Benner 36:13
Holy Christ. Um, okay, so. So I'm going to go back to your note for a second. I'm assuming that as the days and the weeks passed, and, and people feel like they want to help you. I want to ask first, before we get into what actually happened to you, you know, and how community and friends and family got around you. But for anybody in the situation on the other side of it, what do people say that they think is helpful? That really isn't? That'd be a couple sentences and stick in your craw. Right? Sure. So I guess everything happens for a reason. Is that one of them?

Unknown Speaker 36:58
That would be one.

Unknown Speaker 37:00
God must have needed them.

Scott Benner 37:02
They're in a better place.

Anne 37:04
They're in a better place. Yeah, yeah. I you know, and I, that's the other thing is that? You I probably said stupid stuff like that? I don't know. Yeah. to other people. before this happened to me. I don't know what I would have said or what came out of my mouth? Or? Um, you know, I think you

Scott Benner 37:29
at least it's not cancer. We all say that about diabetes. So, right, right. And what is that that's people in a moment, uncertain of what to do with really well intended people trying to very

Anne 37:42
well intended. Yeah, and that's what you just have to give grace. Because people are there, they're trying to make you feel better. They're trying to say something is inappropriate as it might be, they don't

recognize that and that's not their intent. And,

you know, this is taught me to give a lot of grace throughout the last three years, but, you know, I, I truly am appreciative of the way that our friends and our community family have just rallied around us and continue to rally around us. You know, so yeah, there are definitely some things that you don't want to say to

a grieving person.

Scott Benner 38:24
So what is the right thing to do? If I were to have met you in the weeks and months after that, what what is the right thing? To do have been do you think? It What? What's the best thing you could imagine what what happened to you that at least didn't make you think, Oh, don't say that? Because I'm assuming nothing makes you feel better right? Now, right

Anne 38:45
now, there's no nothing could be said to ease any of the pain.

Scott Benner 38:50
So it's a it's it's just probably the quiet right? A hug, like a my hand on the shoulder like glance like those kinds of things are probably the only thing people should even be and And who are they doing it for? Are they doing it for themselves? Or are they doing it for you? right?

Anne 39:06
Exactly.

Um, you know,

it was even hard to have we had so many people around us in the beginning and I just, you know, at the very beginning, when this happened, I was just in a lot of physical pain, it was sometimes hard to have too many people around. Just I just I have my memories are so foggy of those first few weeks and I think in part because I had a bad concussion. I was on some medication. I think it was making me a little loopy. I just the whole first month was just, I have very little memory of it. Honestly. I do remember a lot of people. We had a lot of meals. We had a lot of visitors and i i just i was on autopilot. But during that time, I think that probably the most helpful thing as I, as I look back on it, the most helpful thing was hearing memories of the boys, hearing what people remembered about them. And we had a number of you know, cards and letters and that I've saved to this day, and we'll probably never get rid of. I think one of the most meaningful things was Alex, fourth grade teacher

sent us a,

I don't know two or three pages of just memories she was she was a first year teacher, the year that she had him. And she had journaled very consistently throughout that first school year. And she sent us two or three pages of just memories of Alec. And I, you know, I think more than anything, you know, somebody asked me what, what, what's the most helpful? Tell me what you remember about my boys?

Scott Benner 41:01
Yeah. Because there's this. Like, right now, you're, you know, right now, everyone we know is right now somewhere else living a different life. Like even if it's for an hour, or either at work, or Walter at school, they're having these different interactions, they're making memories with other people. And if you stop and think about it, there's probably an infinite number of those memories out in the world that you're not aware of. And so and so for people to come tell them to you a story is, it sounds wonderful, like I, it's no different than when you haven't seen someone in a while and you're like, hey, what have you been up to? You're asking, like, you know, what have you been doing? While I haven't been in your physical space? You know, I'm interested, you know, and so, so when all those people come in, and offer those things, that's the comfort but not in the beginning. Right? Like, we're not looking for a heartfelt Alex story in the first week or something like that we're looking for the people need to realize that this is if they're going to be involved in your life still, which you hoped they would be. This is a this is a long haul situation. It's not, you know, do you find that people just wanted you to feel better? And, like, did you have that feeling? Or could you not even feel that from other people?

Anne 42:17
Oh, no, we felt the grief and the shock and the prayers and the love and I mean, we we felt, yeah, we felt everything. And we continue to feel that I think sometimes, now that we're so far removed, I think some people think, Oh, I shouldn't mention it. I'll make her sad. I'll make her cry. And that's really the complete opposite. I want to hear their names spoken. I want to hear what people remember about them. I want to hear the stories. I don't want them to go unmentioned at Christmas dinners and thanksgiving dinners and

Scott Benner 42:50
birthdays and even if you do cry that those tears come from, like it's a happy memory then right you're not thinking you're not in that moment thinking they're not here you're thinking this is a happy memory.

Anne 43:02
Exactly. There nobody's making me more sad.

Scott Benner 43:06
Is it fair to say no one could do that to like, add to your sadness, like it is what it is right?

Anne 43:13
It is fair to say that yes. So I

Scott Benner 43:16
have a couple of difficult questions before not that every one of these hasn't been a difficult but I have two difficult questions I don't know if I'll even before we kind of move on I want to hear about how how Adams family at school spoke about him but it feels to me like I don't I'm not really interested in digging into this because I don't think it's what we're talking about. But I feel like if I don't bring it up people listening are going to wonder but how did this has this or how has this affected your marriage relationship?

Unknown Speaker 43:46
Yeah. Um

Anne 43:51
Well, I there's there's no greater trial that I think a marriage can go through.

And that said,

you know, my husband has been amazingly supportive. He is the rock is has always been the rock of our family. We both it's it's hugely interesting to see how differently we process grief. I am very much always wanting to see pictures and videos and it's too painful for him to see them.

As far as our relationship goes,

you know, it's still I think we we understand each other in a way that

nobody else can.

it you know, we're not we have not been without art of without our trials. But we're, we're still hanging on will

have been married for 20 years this March.

You know, there are days when

I wonder how much longer it's going to be. But

Scott Benner 45:04
I will, the reason I asked is because it was happened to me early on, when, when I became a stay at home dad, and I had this little baby in front of me. And I just I recognized in my wife's eyes that you know, like, I never really thought of it prior to the baby right before the baby. Like, we were these two people who met each other and fell in love. We were like, the most important things to each other. And then as soon as the baby came, I realized that I was a guy she met that was her son, you know what I mean? Like, it's a, you know, I'm saying, and, and you see that, like, if it I always felt like, if I really screwed something up, I don't know, how she would, you know, forgive me now your thing was an accident, obviously. But it still takes a large amount of intellectual maturity, to remember that, I would think that that's, that's just how it occurs. To me, I think it's very, it's very cool. And, and, and it makes me feel good that you guys are together and that you're working and that you're realizing that like this whole thing is just a you know, it's another process and and you can't rush through it just like you can't rush through grief or, you know, you can't, you know, not to be ham fisted about it. But there are people who sometimes I get notes from all the time, they're like, I just started listening the podcast last week. And my blood sugar's aren't exactly where I want them. Yeah. And I was like, yeah, we've only been at it for a week, you know, like, it's gonna take more time. Like you have to live in it to see where it goes. I would think that that would be, you know, worth doing.

Unknown Speaker 46:44
I guess.

Anne 46:45
Yeah, yeah. We've found people ask us that a lot, actually. Because, you know, they. I, I don't know what, we know how many marriages survive after a tragedy like this. I don't know what the statistics are. But you know, they, you know, people will ask, say, Hey, you know, they don't have much of a chance now. Thanks. Yeah.

Scott Benner 47:07
Hey, listen, some of them do. Right? You could be those people. I, we all live like that. Like, you know, it's so funny. When isn't it great when you watch people get married, and they're all just like, so happy. And they're young. And I'm like, one into one into one. Every two marriages ends in divorce? Like, yeah, you know, and so. And that's from stuff like, he wants to watch Netflix, and I want to go dancing. Yeah. Oh, that's a lesser a lesser conversation. But but it would be it would be, it'd be silly to ignore it. And this conversation, like you're not unaware of your life. And, you know, I'm not unaware of being married. So I was, I was interested to know, and I wish you a ton of success. I hope it I hope it goes the right way. You know what I mean? Yeah, of course. So your note, which, with your permission, after you're not with me anymore, after you're off the recording, I'm gonna, if it's okay with you, I'm going to read your letter. Is that all right?

Unknown Speaker 48:07
Sure.

Scott Benner 48:08
But I can't do it while you're here. Just so you know, and I don't think you'd want me to and I just, it's not it'll be less ugly if I do it while you're not on the recording. So. But I wanted to get your I wanted to get your, your Okay, before I did that. So a number of months ago, when this letter came, some people might remember that I sort of very cryptically mentioned that we should try to do hard things. And that came from your letter. So I'd like you to tell me about that a little bit.

Anne 48:40
Yeah. So Adam was in sixth grade when the accident happened. And he had an amazing math teacher that year. Their class in November, December, he had been studying, I guess, learning how to plot x and y coordinates. And the teacher had given them I think it was intended to be kind of a fun, light hearted assignment. It was in the month of December, he asked them to plot a cartoon character

on a graph

with the information that they had learned from this assignment, or from the from the lesson. So Adam, there were a number of choices and that students had to go to the teacher and then get the information to plot based on the cartoon character that they wanted. So Adam, was he wanted Mario, he wanted to plot Mario and the teacher initially was reluctant to get into that he I don't think he thought that Adam couldn't do it, but he wanted it to be kind of something fun and quick, and you know, that wasn't going to be very time consuming. This one involved like quarter points or half points on the grid. So it wasn't just it wasn't as easy straightforward

character. So

Adam asked the teacher initially said no, he asked again, the teacher said no, he asked a third time. And the teacher was like, wow, Adam. Okay, here, do Mario. So Adam did Mario. A few months after the accident, the teacher had been reflecting on that interaction what had happened. And he put together they framed Adam's drawing, or the the final product that Adam had done the Mario, they framed that they framed the instructions that were very, very detailed, much more detailed compared to the other cartoon characters at the other students had done. And they had everybody sign it.

They presented

an amazing

while we it's now hanging on our front and center in our living room wall. It basically says do hard things. That's the the lesson is the teacher reflected on all of this that, you know, he saw Adam didn't just settle for a super easy cartoon character. He wanted the hard one, he did the hard one. And he did it well. And the teacher knew, of course of Adams challenges extra challenges with Type One Diabetes. What that presented and, you know, he, when he presented this to Arturo, and Andy and I, he basically said, you know, we're learning from Adams is going to be his legacy for our class. He didn't shy away from doing hard things, either with his diabetes and or with this Mario drawing, he knew what he wanted. He was determined. And the teacher just said, you know, remember that as you go through your high school years, as you go through life,

don't back away from doing what's hard.

Scott Benner 52:07
It's rewarding, I'm looking at it while you're talking. And the message is rewarding. And I mean, I to take it a little farther. I feel like you have to have to know somewhere in the back of your mind that, you know, none of your time is guaranteed. Like we all sit around talking about, like, oh, I'll make it till I'm 80. Or, you know, like Baba, Baba, you know, that everyone has that feeling. But the truth is that not everyone does. And you're not going to know who you are in that scenario ever. Right? So whether it's, you know, atoms years that he got, even at the end, where it maybe was just a few months of him feeling better, because his blood sugar's were, we're better off, right? Like, maybe that was, that was lovely, you know, it and it would have been terrific if that went on for 100 years. But it was terrific that it went on for as long as it did. And, you know, with all of us, either living as the parents of children with type one, or, or people living with type one themselves, I think you have to want for yourself, for however many days between one and a and a bazillion that you get, you know, you should want better for yourself. And it's not going to be easy. Right? Like it's it's not going to be easy, you have have an extra challenge every day. And yeah, some days, they're a lot worse than others. But I mean, I mean, unless you're not paying attention and pulled you already one foot in front of the other one, right? Like you just every day is not great every day is not what you want it to be. Doesn't make it not incredibly valuable, doesn't make it not beautiful, or worth doing or worth living or sharing with someone else, even if it's for your memories, or for what you might accomplish today, but you have to honor people like Adam, they don't have the chance anymore, right? So do it for them.

Unknown Speaker 53:59
Yeah,

Scott Benner 54:00
that's just how it occurs. To me, it's how it occurred to me when I read your note and I didn't know what you were gonna say like, I didn't know what I was gonna be able to say to you. I got incredibly nervous about 15 minutes before we were supposed to start talking. And I mean you I don't I haven't been nervous doing this podcast once. And you know, I just didn't want to I didn't want to I just felt like there's so much here. I wanted to make sure we unpacked it correctly. You know? Because at the end of your note, though, I mean not that all of it isn't absolutely uplifting and soul crushing to read on the on the other side like you don't mean like as I'm sitting and reading it, but when you got to the end, I don't know if you still do this or not. But you still listen to the podcast.

Anne 54:47
I do.

Unknown Speaker 54:49
Alright, right now I'm gonna hold on a second god dammit.

Unknown Speaker 54:54
I just well and you know,

Anne 54:56
it will this you know, this is very interesting and you know When, you know, in the three and a half years that we were working with Adam and helping him to manage his type one diabetes, you know, that I mean, it's it's adaptable it of course hard, it's very, very difficult. You know, and there were a number of sleepless nights, I can recall when I would be sitting down right outside his room, when we got the pump and I was playing with the, the basal rates and trying to figure out, okay, from two to three o'clock, his sugar is going high, or from you know, four to five, it's going low, and trying to trying to make those adjustments in those tweaks to just to make it just perfect. And, you know, it, obviously is hard. It's something you wish that was not a part of your life. But strangely enough, you know, I think after everything, I I grieved the diabetes, I grieved, not having that.

Unknown Speaker 56:00
And

Anne 56:03
I, I, I don't know that we're completely done with it. And I you know, we've I've thought about, you know, maybe fostering a child with with Type One Diabetes. I just, I feel like I have this knowledge I, I have some tools I obviously not perfect.

But I know what to do. And

Scott Benner 56:30
listen, I gotta tell you something. You're killing me. Okay. Aye. Aye. Aye. I'm just gonna for a second, because I don't know one other way to couch the conversation. I'm gonna, I'm gonna make it about me for a second, please. People who think that I do that already. Just shut up. We're doing something here. Okay. Um, I thought maybe the podcasts would help somebody. Right. Like, I thought maybe it could. I was hopeful that it would it started proving itself out that way. It does. Every day. I never thought it was going to help you. With that, you know what I mean? Like, like, it just, I could not have planned for that. It just would have been no way. Do you know, try to imagine, you know, five years ago, me thinking, I'm going to try to take my blog and you know, expand it into a podcast, because, you know, next year, some person's gonna find it, and then their son's gonna pass away, and then she's still gonna find connection to him through a podcast about diabetes. Like, like, there's no, there's no way to imagine that. And so when I was reading your note, that's the part that really, really got me like, I just was like, this is, how are you still listening? And then, when you explained it just now I'm like, Oh, that's how, you know, like, I couldn't I couldn't quite understand it in the note, but I 100% understand it. Well, while you're saying it. Diabetes sucks. But it was the thing you were doing with Adam, right? Like you had this connection to him through this thing that was different than with your other two sons and with anybody else in the world. It's a it's an it's so easy to bemoan it, I guess. And for 1000 good reasons. But you have a different perspective than most of us. And I mean, obviously, we don't wish that perspective on someone else. But it's still a viable perspective. And I've the closest I've ever come to it, I think I wrote about it years ago, was that as much as I hate sneaking into Arden's room and testing her blood sugar when she's asleep, you know, prior to CGM, for sure. I realized one day that I get to hold her hand every day. And I'm watching it get bigger and, and older. And it was a very small experience that most people don't have with their kids. And so I tried to find some sort of I don't know trade off in, you know, from beauty to annoyance, right. And, and I did I think it's one of the things I'm really grateful for I lift her hand up, I know what it feels like and how heavy it is, and, and how it's different from the day before. And you have all those connections to I just couldn't imagine that. It's, it's, it's lovely, actually. Well, no, dammit, hold on, and I'm rolling my nose again. All right, yeah, Muslim, we're up against an hour one of us is gonna have a stroke. So let's, but let's make sure. Let's make sure that um, nothing's left unsaid. There's nothing that you really wanted to say. You know, before before we start saying goodbye Right.

Anne 1:00:02
Yeah, you know, I,

I just my encouragement. I mean, I, I love meeting people who have connections with type one. My biggest encouragement to everybody in the type one community is, you know, keep doing the hard things and be grateful that you still get to do them. You know, like I said, I don't, I don't know that type one. I don't know, the we're completely done with it. And I don't know how we're, you know, in what way we might continue to be involved. But I'm just grateful, extremely grateful for the time that we had, I'm really grateful for what I learned through listening to hours and hours and hours of your podcast and how to help Adam live well. And in his last few months of life, I would give anything to be able to go through and have sleepless nights again, every night. I give anything. But I think, you know, Adam was definitely a, like his teacher pointed out, you know, he had this he left a legacy of doing hard things. And I hold on to that. And I continue to go through as a grieving parent and get up every day and do the hardest thing is going through life without them.

Scott Benner 1:01:41
Oh, is the strongest thing I've ever heard anyone say we can imagine. So I think that. I think that's wonderful. I hope everybody heard that. And it leaves them with a meaningful feeling that they don't escape. And you know, if you want to see, you know, the impact that how diabetes is always around while you're saying this beautiful thing. Arden's texted me. Hey, it's lunchtime. Oh, she's like, and I'm listening to you. And, and she's like, I'm not that hungry. So what should we do? And I was like, I think maybe we should do this and this and she's like, Okay, and then she, and then I asked you to have some juice earlier. And she didn't. And so her blood sugar hasn't gone up the way I wanted it to, but it hasn't gone down. So she's monitoring me in the text messages while you were saying these beautiful things. She says. She says, I never had the juice by the way. I knew I didn't need it. You should listen to me more often.

Unknown Speaker 1:02:51
And I'm going to tell you by the way, she didn't need the juice.

Scott Benner 1:02:55
But she just means is her blood sugar didn't get any lower than it was and so now she's just looking at her. She's just she won't stop like I'm about the texture just go eat Leave me alone.

Unknown Speaker 1:03:08
Oh my goodness. Yes. This remind me quite a bit of my text exchanges with Adam.

Scott Benner 1:03:15
I got one from her this morning. I'm just like, like Arden set this you know, I'm trying to get her to set like a decrease in her bazel and she's just doesn't answer me for 20 minutes then finally I get the what back just what? And, and I was like, if I didn't need to say it to her so badly. I would just say What do you mean? What? Like, I'm always like, just scroll up a little bit. Like, couldn't you just scroll and go Oh, look, he just said it right before I said what? She won't say what she makes me say it again. I think it's my punishment somehow. Oh, I want you to if you see fit, first of all, please accept my my love and admiration and and my good wishes and share them with Arturo. And if you feel like that's appropriate, and don't if you don't, but I just really I can't imagine that you said yes to this. I and I wouldn't want you to know why I asked. It was because I thought maybe it would be helpful for you to just be able to tell other people about Adam, and you're gonna tell a lot of people this way. So it just it just, I thought you'll say I think I even said my email, like please say no, if you don't want to do this, don't feel any pressure to do it in any timeframe. It could be years from now, like whenever you want or don't. And you weren't going to do it at first, but can you tell me as we're kind of saying goodbye? What changed your mind?

Anne 1:04:38
You know, I just thought what a way to honor Adam. And I think you know, any parent who has lost a child will we'll jump at the chance to honor their child's legacy to talk about their memories to hear their names and I you know, I i guess i I came into this phone call not really knowing what was gonna be said, Yeah, how it would go or what could be said, or you know what value that, that I would have. But, you know, I, and I don't know that there has been too much value, but I you know, I guess I keep going back to what I wouldn't give to go through the hard times all over again

of

Scott Benner 1:05:29
I believe there is value in it. And, and I we're gonna find out very quickly because I'm just putting this out, I can't stare at this in my folder. It'll just, I can't I'm not going to so I just I'm gonna it's going out right away so that I can I can sort of, you know, just let it move on to somebody else and see what, you know what they can take from it. I mean, I would, I would bet that that there's a lot of good that comes from you sharing this in, not just for you, and any cathartic feeling you might have experienced over the hour. But um, but for people who are going to hear it, I just I think the message is there like, right, like, What wouldn't you do to, to have those experiences still, even though five minutes earlier, they weren't the best experiences of your life. You describe the day he was diagnosis, the worst day of your life, right up until, you know, something else proved out to be more impactful on you. So yeah, that's really something else. Okay. And you're good. You want to tell a story, or I'm not trying to make you want to make sure you're good, right? How Yes, yeah. All right. Excellent. Um, I genuinely appreciate you doing this. Thank you very, very much,

Unknown Speaker 1:06:44
Stuart. Thanks, Scott. No, thank you.

Scott Benner 1:06:48
Okay, I just hung up with and I want to thank him for coming on the podcast and sharing her story. And of course, her memories of Adam and Alec and how her family has been impacted by it's hard to know what to say right? tragedy feels small, like not even like that's not enough. All right, ready? I'm going to going to read you the email that brought you this episode. All right, hold on. It's dated August 9 2019. It says hi, Scott. This is just the thank you email from a deeply grateful mom. No response is needed or expected. I started listening to your podcast in early 2016. My youngest son Adam was diagnosed with Type One Diabetes in 2013 at the age of eight. On the first day of Christmas break, in December of 2016. We had an endo appointment 30 miles away from my home. My middle son Alec 13 years old, had asked the night before to come with us and route the atoms into appointment that morning. Our color, our car lost control on an icy highway and neither of the boys made it. I miss them every single day. And I would give anything to be able to go back to sleepless nights Dexcom alarms, pod insertions, playing with temp basals toting juice boxes everywhere. And being a student of how to make the arrows stay straight. Listening to so many hours of your thoughts on type one management gave me a new surge of energy and hope for successfully managing type one with Adam. As I know you hear from so many. Putting your strategies into practice led to a two point drop in is a one see from my pre podcast days to his September into appointment. I remember feeling so excited to have as a one c rechecked again in December, I'm certain it would have been even lower. While we didn't get to do that, I'm so grateful for all I learned by listening to you being bold with insulin, manipulating basals. Finally figuring out that Adam's glucose would skyrocket due to adrenaline surges when he played club soccer and learning to make the right adjustments during those times. Your message fueled me with a new level of intentionally and determined

Unknown Speaker 1:09:20
Excuse me.

Scott Benner 1:09:23
Your message fueled me with a new level of intentionality and determination that helped me help Adam manage in the best possible way during his short time on Earth. Adams sixth grade class recognize that he left them with a legacy to do hard things. In every single podcast you offer hope and inspiration for people to be able to do hard things and to do them well. Thank you from the bottom of my heart for utilizing your gift of conversation to share such valuable and battle tested insights. I still listen because it helps me feel close to Adam

Unknown Speaker 1:10:03
and Adam Smith

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Pandora - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

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