#791 What Matters

Danielle's son has type 1 diabetes and celiac.

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

Scott Benner 0:00
Hello friends, and welcome to episode 791 of the Juicebox Podcast. I put too much emphasis on of but I don't feel like re recording it. So here we go

on today's episode of The Juicebox Podcast I'll be speaking with Danielle, Daniel has some children, one of them has type one diabetes, and celiac. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. If you happen to have type one diabetes, and are a US resident, or you are the caregiver of a US resident, please go to T one D exchange.org. Ford slash juicebox. Join the registry complete the survey. It all just takes a few moments. When you do this, you're helping yourself helping other people with type one diabetes, you're helping research move forward, you're supporting the podcast, you're doing so many good things that at the end of that 10 minutes, you'll think I'm such a good person, like I've done so much today, I could probably take the rest of the day off T one D exchange.org. Forward slash juicebox. Take the survey, give yourself the day off

this installment of the Juicebox Podcast is sponsored by in pen from Medtronic diabetes. You're getting your insulin through a pen right now. But your pen doesn't do anything except Sticky, sticky, bulky, bulky. Well, the M pen does a lot more because it actually pairs to an app on your phone. That gives you much of the functionality of an insulin pump. Whew, you're intrigued, aren't you in pen today.com To find out more. today's podcast is also sponsored by my favorite blood glucose meter, the Contour Next One, head over now to contour next one.com forward slash juice box to learn all about my favorite meter. And whatever else that page has to offer, which is a bounty there is a bounty of information at contour next one.com Ford slash juice box. It's like the test trips might be cheaper in cash and they are through your insurance and you can buy them right online as well as that is too much for me to say here. I like this setup a lot. Okay, I do want you to push the microphone back up a little bit. Sorry. Back up. Yeah.

Unknown Speaker 2:43
Okay. Hold on. Let me take a deep breath because I'm a little

Scott Benner 2:45
Are you getting like, no, you're fine. Don't worry. Everything's going fine. Well, it's

Unknown Speaker 2:49
mostly because I ran up and down the steps. It didn't catch my breath. That's how out of shape I am.

Scott Benner 2:53
I would have never run up and down the steps in this situation like this.

Unknown Speaker 2:56
Well, it's Scott Benner day. This is a big deal in my house right now.

Scott Benner 3:00
send everybody out. Are they like outside sitting in the lawn waiting for you to tell them they can come back in?

Unknown Speaker 3:05
Well, no. School, they went off to school and then my husband. I'm sorry about who you are like his man crush. Oh, you're a full on man crush. This is a big ordeal. Like, do you want me to stay just in case you like me? And I was like, I don't need you.

Scott Benner 3:23
Why am I not speaking to him? Do you think do you think you'd get flustered? They wouldn't be able to talk?

Unknown Speaker 3:30
No, he would be he wouldn't be able to do it. I'll get flustered. I might cry today. Full disclosure.

Unknown Speaker 3:36
Well, let's get go.

Unknown Speaker 3:40
But he, you're definitely his man crush that is for sure. Alright, well,

Scott Benner 3:44
we'll introduce yourself and then explain that to me.

Unknown Speaker 3:49
My name is Danielle. I am a wife and mom, I have got two sons. One is five and then my 13 year old is our t one D and celiac.

Scott Benner 4:04
I like the way you said that I'm making I don't

Unknown Speaker 4:06
like the way I said it either. And it's because I get choked up just saying it.

Scott Benner 4:10
Not that part. You said what you said I have two sons, right? One is five. And the other one has an I thought you said that you said that. Is it? 13.

Unknown Speaker 4:20
Yep. Hello. He'll be 13 next week. Okay. So we do

Scott Benner 4:24
know you're doing great. I'm just I was interested how your listen, if we cut out the interesting parts, then this will be boring. I just, this has nothing to do with anything. But it was interesting how your brain flipped that around. You're like I have two kids. One is five. Right? And then I can't even decide everyone go back and listen, it was interesting. Then your brain decided to say the second one a different way. It's interesting. So 13 year old has type one. How for how long?

Unknown Speaker 4:51
Two years, so he was diagnosed. Sorry, this is a lot for me to even talk about real He He was diagnosed one one week before the COVID. Shutdown.

Scott Benner 5:07
What a big week for you guys. It was a very big week. So his pancreas stopped working. And seven days later society stopped working.

Unknown Speaker 5:16
Pretty much. That's how that's how it worked for us. But if I've got to be honest, it was a slight relief that we were shut down. You know, week after.

Scott Benner 5:25
I've heard that from a lot of people, I've heard that from a lot of people who were diagnosed during the during COVID. They're like, at least we were home and we had time to figure it out and everything exactly. Did you walk around in a panic after the COVID thing thinking like, what could possibly keep next?

Unknown Speaker 5:43
Yeah, it was like nonstop panic. That's a lot of like, you know, we we've, the mental part of all of this was a lot for us at that time. Sure. And we've really have worked our way, you know, through that, and are in a much better place now. But it was a lot.

Scott Benner 6:00
younger, I didn't believe you at first and you said you were gonna cry. But you

Unknown Speaker 6:04
know, like, so here, let me be honest, though, we've got, I've done a lot of work for this. I've done a lot of to be able to be on this podcast, it started out just kind of being a joke between me and my husband. And then really, it was, I was realizing that I can't even say the words that my son is a type one without breaking down.

Scott Benner 6:28
That's okay, Daniel, we're gonna work it out today. I'm not gonna charge you a copay, and you're gonna feel better when this is over, I promise?

Unknown Speaker 6:35
Well, I have done a lot of work for it. I do feel like better about it. I feel like our entire our entire house is in a much better place for it. But I think, I don't know if it would have been as hard for us. There were good things and bad things about being, you know, during COVID. And what that meant for us in our, in our mental health for our family. So

Scott Benner 6:58
well first, tell me when you say you've done a lot of work, what does that mean?

Unknown Speaker 7:03
So it took us a long time to find any help, because of COVID shut down and can't get like in front of anybody can't get the help that we need. I was begging and begging anybody to get a hold of local groups to us of, you know, I just needed my son to meet another type one. I needed him to know that he wasn't alone. And you know, camps were shut down. So those were virtual, which is kind of weird for at the time, he was 11. So that was a little odd. You know, he didn't really want to get on those virtual camps. It wasn't it wasn't his thing at that time. So I was trying to get him any help I possibly could try reaching out to therapists, things like that. And it was a six month to one year backlog of waiting. Because they're the mental health in this in our sight is just you know, during that time was so severe and still so it was we took a lot of time waiting. Before we could get any help.

Scott Benner 8:09
Yeah. Okay. And so, I mean, I I'm sorry, I feel like you're gonna be upset, but I think we should talk about it. So, yeah, what were the feelings? Like? I mean, I guess I'm assuming there's no other type one in your family. Where you, you'd have some context. You guys personally, the four of you have any autoimmune issues besides type one? No. How about extended family? Is your mom ever tired? Somebody have celiac?

Unknown Speaker 8:37
Not that we know of. Nobody has celiac. Nobody has type one except for our son

Scott Benner 8:43
thyroid. Nope, I'm gonna keep picking ready. Any bipolar people in the family like an uncle?

Unknown Speaker 8:51
I mean, that I don't know.

Scott Benner 8:53
Maybe? Well, trust me, you'd know. And,

Unknown Speaker 8:56
I mean, there's Alzheimer's and our family. I know that but like, I don't know that

Scott Benner 9:00
Alzheimer's inflammation. Okay, I'm just I realized, by the way for people listening that some of these things are not strictly considered autoimmune. There's just, there's things I hear from people over and over again, that that makes me think about stuff like Okay, so the point is, it comes out of the blue. He's, like, almost 11 years old ish, or 11. When it happened.

Unknown Speaker 9:24
Yeah, it was a month before his birthday. Hey, about so.

Scott Benner 9:28
COVID Yeah,

Unknown Speaker 9:29
it happens a lot around birthdays. It seems like from all the scores that I've been hearing, so I don't know why

Scott Benner 9:34
your son has the classic COVID diabetes birthday. There's cards up and down the aisle for it.

Unknown Speaker 9:43
Yeah. And you know, we were in shock we were at. I can remember being at his doctor's office and thinking that it was just, you know, we knew something was going on with him. We thought that either. You know, my son might be a headcase in general, and needs a lot of therapy like we got that was just what it was because of the emotions were so crazy at the time. Or, but I was kind of thinking this might be something bigger than that, you know? Okay, and so usually my husband and I, we don't go to the to every doctor's appointment together. But something was on sad that morning that we both just knew we were both going to this appointment.

Scott Benner 10:23
Oh, I see. I say, to go backwards for a second. Your son may be a headcase. What does that mean?

Unknown Speaker 10:29
Well, I don't you know, before diagnosis, it was like, extreme, extreme emotional, like, you know, just changes in him. But it was like, What is going on? I was noticing that he was kind of separating himself from friends. And now I understand. It's just he doesn't he didn't feel well, you know? Yeah, I noticed that, you know, the emotions were running high there was crying for kind of felt like no reason to us. And just emotional outbursts.

Scott Benner 10:56
So how long do you think the the type one was affecting him before you figured it out?

Unknown Speaker 11:03
I think I think that probably six months prior, we had maybe a little note of it. And then his probably pancreas kicked into gear and just kind of go back to normal for a few more months. And then we are about he a stomach bug went through our house. And after that stomach bug, he was just never recuperating from it. He was never felt like he wasn't getting better when the rest of us had. And it would like ebb and flow where it was like once or twice a week, he was just not himself.

Scott Benner 11:32
Okay? How to present. I mean, what, what sent you to that doctor's office with so much confidence that there was a problem.

Unknown Speaker 11:40
Um, so one, the emotions were just, he just wasn't my kid anymore. Like, I mean, he was obviously my kid, but he just wasn't acting like himself. And he's usually like super outgoing. He was becoming very introverted. He was complaining of like, stomach aches and headaches and things like that. But, you know, I mean, you're not running a fever, go to school, you're not throwing up, you're not running, running a fever, you're going to school, like, and I feel so bad. And there's so much guilt now, because I put him through that. You know, when he really really wasn't feeling well, but we are the family that like, both mom and dad work. We can't like, you're not you're not running a fever, and you're not really, you know, that sick. And it just seems like you're tired or you stayed up too late last night or something like that. You're you're going to school?

Scott Benner 12:27
Well, why does that make you feel guilty? Because I mean, he was suffering? Well, how was he now? He's great. He's thriving. That's fine. If you if you got into a little time machine and went and found some parents from 1974, and said, Hey, would you feel bad if you sent your kid to school with a stomachache when he didn't feel good? Because he was about to get diagnosed with diabetes, they wouldn't even know what you're talking about. Yeah, so I hear you. I mean, listen, I had guilt myself. I've seen my wife habit. But at some point, the truth is, that part's over now. You know, like, you'll never make that mistake. Again. If you have 73 kids and 73 kids get type one diabetes, you're gonna you're gonna know it every time. And it's a learning experience, for sure. And he's fine. So I don't know. Onward, we are

Unknown Speaker 13:21
on high alert. Now with the five year old anytime that he's saying that he doesn't feel alone or something like that we are we are on high alert. So

Scott Benner 13:28
Well, would you prefer to get him TrialNet test and just

Unknown Speaker 13:33
have really, really thought about it. And we've been like, right on the brink of doing it. And then we're there's something that like, holds us back and that we don't do it like? I don't know if it's because I don't know why. I mean, I'm not completely against it. But I also feel like we at least know the signs now. You know, so I feel like we might be in a better position. You know, but I don't know, let me keep going back and forth.

Scott Benner 13:59
I understand. And I have no preference on this. Just let me ask you questions. Better to feel the way you feel now or just know that he's got the markers for the antibodies.

Unknown Speaker 14:09
That's what we that's what we're debating right now. And that's why we can't make up our mind because we're like, what's going to make us feel better about this, like that we are just on high alert when he doesn't feel well, or that we know that he has those markers. And when he doesn't feel well, we're will we end up just taking him all the time to the doctor or pricking his finger constantly. Because, you know, we're just making assumptions.

Scott Benner 14:31
So my question is, are you is this self flagellation? are you torturing yourself on purpose?

Unknown Speaker 14:38
Oh, yeah, I definitely torture myself on purpose. That is for sure.

Scott Benner 14:43
I know everyone thinking, listening now for how 14 minutes in Scott already understands what's happening. I know it's It's my gift. It's only it's the only thing I'm good at. Thank God that Apple came up with cell phones and these microphones are really everything I'm good at in the world would have just been wasted on Kelly. Call. Arden? Yeah, yeah. My wife, my wife once told me, You should be a human resources director. And she's like, she's like, you've you figure people out so quickly. And I was like, Oh, it's just because I'm willing to generalize. The rest of society gave up on it. I think it's terrific.

Unknown Speaker 15:18
But we can't have you doing that. Because the podcast needs you business. A lot of T ones that need you. You can't have a backup plan. Sorry.

Scott Benner 15:27
You're right, Daniel, I'm done. I gotta make these I gotta make this podcast. But okay, so I would say, I mean, let's say the obvious things. therapists make you come back week after week after week until you come to a conclusion. Stop torturing yourself. That would be one thing. There's no reason to feel guilty. You didn't do anything wrong. And sounds like your kids doing great now.

Unknown Speaker 15:46
Yeah, right. Yeah. But it's hard. You know, that's really is what my therapist tells me, like, Stop torturing yourself, like, you know, but hearing it and feeling it are two different things. And of course, why now, and there's a constant conflict. So

Scott Benner 16:01
why is it hard? To not just to just let it go?

Unknown Speaker 16:06
I don't know. I don't know if it's because we're just at that two years. But like, I feel there's something in within me that if I feel all the things for him, he won't have to hurt. You don't have to suffer. And that's not the truth. Right. This is his journey. Right? I was able to do this. But there's something in me that that's what I take on.

Scott Benner 16:31
I understand, I believe to that might be I'm not real.

Unknown Speaker 16:36
No, I know that it's not real. So you're I know that it's not real. It's just I can't keep that from from building up.

Scott Benner 16:43
Let's ask a couple more questions. Any chance? You're Catholic?

Unknown Speaker 16:46
I am. There's the Catholic guilt. Thank you.

Scott Benner 16:50
Yeah. You're murdering yourself right now. You know that? Yeah. Okay. Yeah. All right. Well, that's all I don't know what to tell you.

Unknown Speaker 17:00
It's just something. It's something I got to work through. It's something I've got to move forward with. And, I mean, this is where we're at. And, you know, I'm seeing we were suffering a lot for a long time. And now I'm seeing our family is in such a better place. And I know, I do know, he's going to thrive, he will do great with this. He is already taking on so much of his own management that, you know, well, I can't say I mean, he's at a five point a one C, and we're MDI, like, I feel like we're crushing it, right. So

Scott Benner 17:36
Well, listen, I don't want to, I'm not looking to make you think about things that aren't gonna happen. But I would say this, let's say just things keep going wrong. I don't know, every three years on, on this kid's birthday, you get something else, right. You know, when Arden was the baby, she would say what matters when she meant that doesn't matter. Yeah, so it doesn't matter. I mean, it's not, I think it doesn't match these things don't match expectations, or hopes and dreams. But I don't know that. I mean, giving up whether it's in the physical space or in your, or in your psyche. I mean, you're gonna be alive one way or the other. Yeah, you know, so I say, don't give up. I say fight. And I say, Don't torture yourself. Because there are, I don't know how old you are. Would you tell me?

Unknown Speaker 18:32
I'm 40. And I'm loving it. I'm so excited for my 40th birthday.

Scott Benner 18:36
You're, you're quite literally than 10 years younger than I am. And I'm going to tell you now, as silly as it may sound to people who are younger, I'm already imagining like, This is it for me, a guy like I'm in the last third of my life, statistically, right, like, maybe I'll live past 75. But I, you know, I've raised the kid with type one diabetes, I probably had a lot more stress than most people do. I have a job where I sit still, you know. And even if I make it to at my mom's ad, it doesn't look like a whole bunch of fun. Danielle is near as I could tell. So what my point is, is like this is it right here like I'm I have 25 years left, that I can really probably enjoy the last 10 are not going to be super exciting as far as moving around and everything, hey, 15 years of my life left to really do something. And I look back on the time that I spent feeling upset or worried or burdening myself. And I think I wish I could go back and smack that guy in the head and tell him that when he was 50 Is that he was going to hurt all the time. And that, you know, you really should enjoy this time right now because you're giving it away. And even if psychologically, you can't bridge that gap, I understand And but I don't know like it's just seems like a shame because look at you guys came out of this the other side the kids doing terrific. And you should be enjoying this right now. I mean he's he's a 13 I'm going to tell you right now, you won't believe this. And maybe people said it in the past. He's 13 that testosterone is gonna start hitting him really soon and he's gonna become such a dick. And just

Unknown Speaker 20:24
like, well, this is kind of

Scott Benner 20:27
it already started.

Unknown Speaker 20:31
Sometimes he's a super super, super sweet kid. But there are times where I'm like, Chief

Scott Benner 20:37
Whateley rolls pasty and doesn't give you that huggy used to give you for no reason your

Unknown Speaker 20:41
Oh, that has already started. Not all the time there are so if nobody's looking, he's definitely like very loving. But if we're around other people, stay away from me, Mom.

Scott Benner 20:52
I'm telling you enjoy your boy at last. So also give me a second here. For some reason, someone in my home turned the air conditioner on up here. And so I mean, I don't know. But I'm sitting here. I do not want the air conditioner running. I'm just adjusting it right now. All right. I'm sitting here. Am I getting cold? Like what's going on? I'm the only one up here. I get to decide how warm or cold it is. It's not up to other people. All right.

Unknown Speaker 21:25
It's like the typical.

Scott Benner 21:27
I'm in charge of

Unknown Speaker 21:29
service. You have your new balances onto Scott. Well,

Scott Benner 21:33
first of all, are they wait? And I actually wear another type of sneaker that are embarrassing because my feet hurt and they're not new balances.

Unknown Speaker 21:43
Or they let me guess. Are they the

Scott Benner 21:49
same over here? You trust me? I don't know. Are they the hookahs? No. Oh, all right. No, I don't know what they're called. All I know is they're more expensive than sneakers that look nice. And my feet don't hurt when I wear them. Okay. All right. So okay, so we we notice all the changes, take him to the doctor, take them to a doctor's office not to a hospital right?

Why oh, why? Oh, why? Oh, why? Don't you take the time to get yourself an accurate blood glucose meter? Why didn't you just take the one they gave you? No. Okay, you might not have known back then. But now here you are talking to your pal Scott. And he's telling you contour next one.com forward slash juice box. Check out the Contour. Next One blood glucose meter. Easy to use, easy to hold. Easy to transport. Easy to see with Ignite. Great screen. Simple, simple screen. No, like, little it's not like a ton of little What am i but like icons and things you don't I mean, like you don't look at it and go, What the hell is happening, just the number right there. Done, I know what I need, you can actually set the meter up with your range. And I'll give you like a color code. So I mean, I don't want to go into it. Now go to the website contour next one.com forward slash juice box, check out what it does. If you like it, you hit the buy now button right there on the site. And you can buy the thing online, a bunch of places walmart.com, Amazon, Walgreens CVS, Meijer, Kroger, target Rite Aid. What I like about that I wouldn't the buttons right there on the website, you go over and check it out. All kinds of things you're gonna learn when you get there, what customers are saying about the device, how you might be able to get the device and the test trips, cheaper cash than you're paying now, through your insurance. These are all things you should investigate. But in the end, you want to be using an accurate blood glucose meter. And the Contour Next One is our choice. Arden has been using it for a number of years now. And it really is like honest, the best meter I've ever used. It's my favorite by far. Contour next one.com forward slash juice box, the links in the show notes, links at juicebox podcast.com. When you use my link, type it into a browser, you're supporting the podcast. And you have my eternal things that don't go just yet. Because we still have to talk about the in pen from Medtronic diabetes. If you don't want an insulin pump, right, aren't you do you but don't just use the pen. Don't just use a regular old like turn the thing say three units push the button pen that's all it does. Get yourself an in pen from Medtronic diabetes because this in pen pairs with an app that shows you a dosing calculator active insulin remaining glucose history reports activity logs, dose history meal history and your current glucose. I know I've blown your mind. But this is all it's all real. You can get some of the functionality Be that you expect from an insulin pump with the in pen. And that ain't nothing in Penn today.com. Once you're there, you can fill out some information to get more information sent to you, you can watch some videos to see how things work. You can even even even find out about their 24 hour Technical Support hands on product training, and online educational resources. And oh, by the way, you may pay as little as hold on to yourself here for like, if you're driving, really focus on what you're doing, because when I say this next bit, you could just go right off the road, pay as little as $35 for an infant, Medtronic diabetes doesn't want the cost to be a roadblock to you. So with the in pen access program, you could pay as little as $35 to offers available to people to commercial insurance Terms Conditions apply, of course, but it could be you go find out baby in Penn today.com in Penn requires a prescription and settings from your healthcare provider, you must use proper settings and follow the instructions as directed, or you could experience high or low glucose levels for more safety information, once again, visit in Penn today.com.

Unknown Speaker 26:18
Yeah, we took him to the pediatrician. And, you know, he goes in and we're there for a total of five minutes before the doctor comes in tells us you know, I'm not the one who technically can diagnose this. However, you know, blood glucose is higher than what we can test for in this office, you're looking at a at a type one. Diagnosis and you know, I, I sat there thinking, Danielle, hold it together, hold it together. Your kids right there, he's gonna see you, he's gonna see you. And I like, couldn't take it. So my son saw me kind of start to tear up. We've got the doctor telling him, you know, you're going to live a long life, this is not going to stop you from doing anything. You're going to be fine. We're gonna get you the help that you need. me tells me I'm going to let Peyton Manning's know that, that you'll be coming. And I said, Okay. Like, do we just set up an appointment with them? Like, I'm still in shock. I don't understand, like, how big this is. And he looks at me like I have two heads. And he said, No, you're going now you leave this office, you go straight to the er, er, and letting them know you're you'll be there. So you know, we have so we we go to the hospital, were there for literally just one night, he was at 13 A onesie. And it was like a whirlwind of maybe? I don't know, not not. It was maybe like around 36 hours, probably that we were there. But by the time that we were kind of checking out he was already doing his own injections. He wanted to get out of there. I wanted to get out of there. It was really weird in the hospital because it was, again, COVID situation. And it was at the very beginning of it all. And so you're hearing a lot of the COVID discussions, but not really knowing what it meant. We're asking questions about it. And not getting a lot of answers around

Scott Benner 28:30
it because they didn't know. Yeah, they didn't know either. Hey, I have to say this Peyton Manning, he's got his name on a children's hospital.

Unknown Speaker 28:37
He does and I have to tell you that they are absolutely phenomenal. That are endos there. The whole whole group. They are awesome. So

Scott Benner 28:48
I have a new five a new goal. Now I want to put my name on Children's Hospital. That sounds amazing.

Unknown Speaker 28:54
That sounds like a Brenner Children's Hospital. It

Scott Benner 28:57
seems like a vanity thing of all vanity things putting your name on a hospital. Do you think I mean, I feel like you deserve it at this point. Right. I mean, I've never thrown a football to somebody. But yeah,

Unknown Speaker 29:07
but like, look at this podcast, right? That's like equal, right?

Scott Benner 29:10
Yeah. Oh, trust me. I was being sarcastic. I definitely deserve it before Peyton Manning by the way, so to about 1000 other people. Yeah.

Unknown Speaker 29:21
Oh, come on. Okay, where we're from Peyton Manning is God so?

Scott Benner 29:27
He deserves this. He deserves this.

Unknown Speaker 29:29
He has done so much for this community though. Like I he does deserve it. He has done a like an amazing job with our community.

Scott Benner 29:38
All right. Listen, I'm just saying if I was a professional athlete, and I was pulling 10s of millions of dollars out of a place I'd give a little back to I think that seems reasonable. Fair enough. I just use struck me you're like we have to go to Peyton Manning and I was like the football player. How is that going to help?

Unknown Speaker 29:53
I just call them up real quick. over to his house. He knows what

Scott Benner 29:58
to do. He knows what to do. Do Oh, I could be the title of the episode. Yeah. Okay. So you're in and out of there pretty quickly because they're basically pushing everybody out of the hospital who doesn't have you know, who doesn't have COVID? At that point? Exactly. So what exactly how do they? How do you stay in contact with people? Because they imagine you don't know what you're doing on day. Three. So you're managing from home over the phone.

Unknown Speaker 30:24
I mean, we we didn't even do that. We just managed from home. I wasn't even calling at that point. I was, you know, we went through like the full like, T one D school and four hours while we were there. And then we left.

Scott Benner 30:37
That was that you're gone? What was this blood? Do you remember his blood sugar?

Unknown Speaker 30:42
I don't remember his blood sugar, I want to say so when we were at the peds it was higher than what the pediatrician can actually check for four or five. I want to say when we got there. I want to say I have no no idea. I don't recall him. I just know that he was at a 13 a one C

Scott Benner 31:02
but he they they put him on a drip. Right? They brought him down for everything and then got him going again. What was his reaction? Like you're sitting there crying? Is he confused?

Unknown Speaker 31:14
Yeah, very confused. very confused. You know, he thought he was going back to school that day. We had, we had left school to take him to his pediatrician appointment, thinking he was going to go back. And so you know, he thinks he's going out to lunch before he goes back to school. Like, you know, I'm getting Taco Bell today before I go back to school. He's thinking like, he's loving life. That was not the case. Yeah, I think we still had to get Taco Bell all the way. But because he was hungry, but I think that was my weirdest point of leaving the pediatrician and going to the ER, was that it was over lunchtime, and my kid was hungry. And he's like, Mom, I'm like, I haven't eaten lunch and my, like, I don't know what you're allowed to eat and what you're not allowed to eat. If that has anything to do with this. I don't know what to do. And my husband looks at me and he's like, Danielle, it's going to take five minutes to go through the Taco Bell drive thru. Stopping at this kid some food we don't know, once we get to the hospital, how long it's going to be until he does get to eat. So feed the kid. Just, we're on our way. It's five minutes, he's going to be fine. We're gonna get there feed them.

Scott Benner 32:15
Like it's interesting, though. Because REM was basically luggage when she was diagnosed, not only was she to you know, but yeah, you know, she was a she was she was on her way to a coma as well. So she was a little little spacey by the end, which you didn't really notice until you noticed. But okay, so he gets to the hospital, you do all that you get home, what and your your MDI now two years later, so pens they sent you with I imagine?

Unknown Speaker 32:41
Yep, they sent us home with pens. He was back. So this was on a Friday, he was back at school on Monday. So getting his own injections. And that was the most bizarre thing we had heard over the weekend. You know, rumors about schools shutting down and things like that. And my husband was like, one, I work for a small company My husband works for for a small company, it's hard sometimes to get get abrupt time off. I know it's not as stupid as that sounds. It's hard to rearrange things in order to get that time off. And at that point, like, look, what are you going to do send him to school? He's doing fine. Ish. You know? Like, do we take this time off? And my husband's like he has one week, and then we may be shutting down when he needs to go to school.

Scott Benner 33:26
When you say, Fine. Is that is that he's doing fine. Or you don't understand all the reasons why you might not have wanted to do that.

Unknown Speaker 33:34
Yeah, we just didn't understand. We didn't understand. We didn't understand anything that we were doing at that time. That was the most bizarre thing. Like luckily, his teacher had reached out to us over the over the weekend to say, Hey, is he okay didn't come back to school and we let him know he set up a 504 meeting with our nurse and our school counselor for that meet morning on Monday. And we're going to that morning meeting and dropping my kid off at school. And that was the hardest thing I've ever had to do. I don't know how to take care of them. Right. How do you guys know how to take care of them?

Scott Benner 34:06
I almost couldn't let Arden get on a bus. Yeah, I had like all that feeling. Any love. Can you add years of experience at that point? Yeah. But looking back, it stemmed from I didn't have any confidence even in what I was doing. So I mean, I couldn't imagine that someone else who didn't care about her would do better than I was doing. And I was trying really hard and not doing particularly well. So yeah, yeah, I get that. I really do. Alright, so he heads back everything's, I mean, he's given himself his own shots in three days.

Unknown Speaker 34:39
Yeah, he was giving himself his own shots by the time we left the hospital on Saturday.

Scott Benner 34:43
That's pretty cool. I'm going to talk about along here at some point with Arden but Arden just gave herself her own shot for the first time like,

Unknown Speaker 34:52
Well, was it here's, here's what I think is the difference. Was it with like a needle that she's pulling and then or is it was With an actual pen, that was the needle. I think it's very different when it is a pen.

Scott Benner 35:06
Because it looks like physically appears different.

Unknown Speaker 35:09
It's just it's an easy little teeny tiny push is the year to mean it's a teeny tiny needle. It's a you don't I mean, like, I just feel like it looks different. It feel less, like sterile or less like, medical. You don't I mean, there's something about it, there's just feels like a little bit easier. I think I'll get her

Scott Benner 35:26
on here and let her explain it. So I'm interested because she, she, I don't want to give it away, but it might have taken her hours to do it. So it was just she just never done it before. But she did it. Anyway. Okay, so who oversees his care moving forward? Is it both you and your husband? One of you just him? How does that all work?

Unknown Speaker 35:51
We are. We are a 5050 household and pretty much almost everything that we do. So it's when it comes to his management. We're still 5050 Okay, so would you say at this, so we text diabetes, we are all on the same text string so that we are not. I'm not sending him a text that my husband setting up a text we all know exactly what's happening at the same time, okay, so that it doesn't feel like mom's nagging and dad's nagging. We know when one person has already talked to him about it.

Scott Benner 36:20
Okay. Okay. So you guys are in a text string together three of you. Yeah. All right. He sees let's make something up here. He leaves school today he's walking home. A he sees something on the side of the road that he wants to buy, he buys it for food, he texts you and says, Hey, how many carbs you think this is? Or does it on his own?

Unknown Speaker 36:44
Depends. If it's something that it's not normal for him. He'll do it. He'll text us. And we'll talk about like, Hey, where are you at? Like, which that's a weird thing we say all the time is where are you at? And other families around us are like he's right there. What are you talking about? I'm like, No, the number like that. That's a weird thing that our family is always saying is where's he at? Where are you at? But we need? Yeah. But so we'll kind of talk through it or be like, Oh, well, you also have practice. So maybe think about doing this much instead, you know this many units or you know,

Scott Benner 37:21
all right. Well, that'll make sense. Is he using a CGM?

Unknown Speaker 37:25
He is he's on Dexcom. We. So while we are in the hospital, I'm learning about the Dexcom. Our two week checkup? Of course, because we thought this shutdown was only gonna last two weeks. I'm telling his endo at that point. Like, we need this. I want this CGM Mike. He's a very active kid. He plays trouble sports. He's in trouble baseball. I cannot imagine him being out in the field for an entire inning. with out knowing where he's at, like, I can't, I can't do this like, and he's not coming in every inning and picking his finger like we're, you know, we gotta get something figured out. I need more than this. We need. You know, you ever hear we we had it within a week.

Scott Benner 38:08
Did you ever hear? Do you ever hear Sam fold on the show? SAMSA. He's a former major league baseball player. He's the general manager, the Philadelphia Phillies now, but he's been on a couple of times. At one point, he said, you know, he's older, you know. And he said that, if you ever see me on TV, playing baseball, and I'm chewing seeds, my blood sugars, okay, and if I'm chewing gum, I'm low. And that was the extent of his diabetes management while playing for the I think the raise the A's. Maybe I forget, he was on three or four teams. And he played for eight, eight or nine years. So I get how you feel. And I wonder how much but I also I also know that a lot of people have been okay, for a long time. And I struggle I in the past, I'm getting better at it now, with the balance between those things. Like I don't know what Sam's blood sugar was when he was playing major league baseball, right? Like maybe he was out there. And it was 200. And that's just what he felt like he had to do the CGM don't exist at that point, etc. Right. But, and would I want my daughter to be 200 for four hours in the afternoon, I wouldn't, and I would actively do something about it. But if it were to happen once or twice, I've also learn not to freak out about it. So it used to be there's a difference between being upset and being okay with it. And here's what I mean by that. I used to see a blood sugar 150 It's a little sticky. I can't get it down. And it bothered me. You know, I was the entire time it was up. I was concerned about it. It was in the forefront of my mind. And now I've done this for so long. I know Okay, put this insulin in here. And in an hour and a half, this is going to be lower again. And it's okay. And I do not think about it in that hour and a half anymore. So as long as it's not going up, meaning that what I think is happening isn't happening, as long as I'm seeing steadiness and a decline, I don't think about it again. And I made that decision consciously because I was pretty sure I was going to, I was gonna burn myself out a lot faster, be you know, because her blood sugar is gonna go to 140. It's gonna go to 180. It's just things are going to happen. What I do next seems important. And I draw a little bit from those older type ones that I've spoken to about that because Okay, Arden's blood sugar can't be 200 forever. It can't be 180 forever, it can't be 140 forever, that is going to longterm be a problem. But for three hours, if it's not impacting or in any other way. Me, you don't I mean, like, yeah, not that it's not a problem, but I can't, I can't torture myself about it. Yeah, that's,

Unknown Speaker 41:05
well, I'm a lot, we're a lot better about it now. And, you know, through listening to the podcast, we're a lot better about, you know, just dealing with it in the moment and then moving on. But I at that time at right at diagnosis, I was so scared of those lows, and so scared that, you know, my my kid was gonna have a seizure out on the field. Right that I was, I needed to know, I needed to know where he was at. So I could help guide this and I would sit there and just look at the Dexcom the whole game, the whole game for that first season. It was a delayed start because of COVID. To the seasons, we didn't have near as many games, but I sat there and I would just stare at it nonstop. Just know where he was at. How'd you find we'll say though, I do know if he's going to fall out fell off. He's going to strike out or if he's going to, like get a hit. Judging by his numbers. Now you

Scott Benner 42:00
can tell by his blood sugar. Yeah. What do you think, is hot hand eye coordination?

Unknown Speaker 42:05
I do. I think it's hand eye coordination. I think there's, I think there's like different levels of kind of anxiety that go along with it too.

Scott Benner 42:17
It's interesting, so I don't discount your what you're saying. Arden's foot speed would drop significantly over a certain blood sugar when she was playing softball. I also wonder what you're seeing with that in general because baseball I mean, softball but similar game. I did not see a ton of impact from playing softball on blood sugar's like Arden could stay pretty steady during a game and not drop. Like afterwards.

Unknown Speaker 42:44
Well, we were honeymoon or we've had a really long honeymoon. Okay, a really long one. So we were about a year and a half. And before we noticed that we went through two baseball seasons of honeymooning where we didn't really worry about the highs. We didn't get highest, like, highs at that time for us anything over 180 We weren't getting Oh, we were only getting quick drops and lows.

Scott Benner 43:08
That makes sense. Wow. So long honeymoon.

Unknown Speaker 43:13
Well, and so we've actually randomly We found your podcast right as we were having troubles because we were coming out of honeymoon and didn't know how to do this anymore. Because it was a whole other ballgame is when we found the podcast but had our last endo probably three weeks ago. They said that they think that he might still be honeymooning from time to time, like his fingers may still be kicking in judging by what they see is happening on his graphs and things like that. So I don't know. I don't believe it. I think that he's past that. When we were honeymooning, we didn't have the protein and fat races. We didn't have that. We didn't have you know, crazy high numbers and things like that. We didn't have to do corrections ever.

Scott Benner 43:57
Okay, yeah. You were getting home from somewhere. I mean, especially if you're stopping at Taco Bell still. Yeah, so is there ever talk about a pump or is he really liked the pens

Unknown Speaker 44:10
he'll be my I will push that he will be on a pump. By his freshman year of high school. I would like for him to have a minimum of four years kind of training on it before he leaves to go to college or leaves to go to out into the world.

Scott Benner 44:27
Okay, so why is it not important now but it's important in high school.

Unknown Speaker 44:33
We are doing really well maintaining now. But that's with still we're texting diabetes. I can't be texting him diabetes when he's 19 years old. I mean, I guess I can, but like I would like that training on this pump together as a family when he like for a few years before he leaves.

Scott Benner 44:52
Well, I am Hold on a second. I get where you're coming from. I'm pulling my texts up with art right now because I think there's One here from last night that says

how did we get so low? I don't know. Are you planning on doing something about it? Uh huh. Yeah. Uh huh. When that's leave me alone. That was that's

Unknown Speaker 45:26
all very similar. Yes, that sounds very familiar.

Scott Benner 45:30
She's, she's gonna be a theme a couple of months. So,

Unknown Speaker 45:33
yeah, but one day, I'm gonna have to let him just go. And I need to know for my own sake that I've done everything that I can possibly training to get him there. But like, right now, I know that it's, it's I'm, he's, he's a little bit more open to it now to get on a pump. Oh, yeah. What are we he has been kind of hesitant because he doesn't want to wear another device, like, things like that. So which I get, but I'm, and so I'm kind of like, you know what, we're fine right now. But if you start slipping, and our agency is gonna go, you know, above 6.3, which that's the highest, we've been on MDI, right, then you will be going on a pump. And when you get to high school, you will go on a pump as well. He's in seventh grade now, so

Scott Benner 46:17
So I don't see anything wrong with what you're saying. I think it's rock solid thoughts. I want to add to it, but not confused that I'm I'm not rebutting what you're saying by saying all of the things, almost all the things that I worried about, over the years about the future, now that the future is here, I'm not in any way concerned about them.

Unknown Speaker 46:41
I know I need to stop worrying so much. Yeah, I

Scott Benner 46:43
even like, so are chosen a college, she's gonna go really far away from here. Like the kind of far away where if somebody says, I need help, I can't drive to you. Like I can get to my son, if, if my son texted me right now, and he was like, you have to come here, two and a half hours from now I'd be standing in front of it. If art and texts from where she's going and says you have to come here, and I jumped in my car, about 13 hours later, I'd be tour. And the truth is, is that that might be quicker than an emergency flight that would, you know, get me there. But you know, unless I got lucky and like, showed up the airport, and there was a flight available, right? But she is going to be farther away than we can impact. Like, there's just not going to be any way for us to be a person that that's valuable for her in any kind of an emergent situation. And I don't even care a little bit. And I know that you would have told me that 10 years ago, I would have just maybe had a mini stroke. Yeah, yeah. Yeah. So interesting. I don't know,

Unknown Speaker 47:46
I feel very confident that he will be successful in this and that he will be doing his own thing and managing this very well. Yeah, I have full confidence in that. It's just getting him there. I think it's being diagnosed at 11. And the timing is just kind of weird. You know what I mean? Like, not that any timing is great for being diagnosed or isn't weird. And people. You know what I mean? Like, I'm not saying that our situation is, you know, this isn't like a test to see who has the worst situation.

Scott Benner 48:21
are you apologizing to everybody for Well,

Unknown Speaker 48:23
yeah, because I don't want it to sound like oh, woe is me. We're so

Scott Benner 48:27
we don't everyone who listens to this understands you're not doing that. And if they don't listen a little longer, and they'll figure it out. So yeah, we're not gonna spend a bunch of time apologizing is a reasonable statement, it 11 years old. First of all, does sound like a tough time. Secondly, is your only experience and diabetes is hard. So you're going to think elevens hard trust me if he was diagnosed at nine or 13 or 15, you would have said, you know, nine years old was a tough time to resign.

Unknown Speaker 48:55
I think it's hard at bat like the preteen is like a social situation with of understanding being okay with it, like so. Like kids are so unsure of themselves at that age, that it's just you already mean? And then you're adding on this thing that now all of a sudden makes you different when you weren't different before?

Scott Benner 49:13
No. Would you describe yourself as an overthinker?

Unknown Speaker 49:16
100%?

Scott Benner 49:19
Because I could ascribe anything to anything if you wanted me to. Yeah, but I'm having fun talking to you. Okay, so a couple of things. 504 plan how did that go?

Unknown Speaker 49:33
Do we still don't have one to this day? Got?

Scott Benner 49:37
No, see that can't be true. Because the most exciting thing Can I be honest with you? I didn't bring it up in the moment. One of the things I was very warmed by in your story so far was that the school immediate was like, Hey, give yourself a 504 No, no,

Unknown Speaker 49:49
not the school. Oh, you got the school, the teacher. Oh, wasn't the school, our schools systems. I don't care how that sounds at this point. Go ahead. They are the worst about AI APs and 504. Plans for kids are our group or our school district is known in this area to be by far, they will push back, push back, push back as much as they possibly can. How long

Scott Benner 50:17
have you been trying to get a fiver for two years? Really?

Unknown Speaker 50:22
It started out we couldn't get it because it was everything shut down. Right. So that was March of 2020. Everything's shut down. So then we weren't in school. So then the counselor at that time was telling us well, let's wait and see. We don't really set these up until we know how they're gonna react when they're in school. Knowing what I know now that was a bunch of BS. Yeah.

Scott Benner 50:44
Hey, are you going to the Eli Manning Middle School? Is that the problem here? Because the only one that Super Bowl by mistake for any of you Giants fans listening, let me just say for a second, Eli Manning, you don't get to throw a ball that a guy pins to his helmet and call that on purpose. Okay, it doesn't count. Obviously. Peyton's the better quarterback. Well, yeah, I just, I assumed any school named after Eli would just,

Unknown Speaker 51:12
that's. So we also it's a very large school district, I will say that our school district is very large. So that's maybe part of it. Maybe its funding, maybe it's where they want their funds to go. I don't know, funding,

Scott Benner 51:25
how much is the cost of a fiver for me,

Unknown Speaker 51:27
I don't know. But it seems like it's a lot of paperwork that they don't want to do. And it seems like it's gonna cost them time and money. It's what it feels like,

Scott Benner 51:35
here's what I think. I think they don't want your kid to have a 504 plan. Because once you have a 504 plan, they are they're beholden to follow it. And they're concerned that if they don't follow it, you're gonna cause them trouble. I'm guessing that they're using this avoidance tactic with a lot of success. And so that's why they're doing it, I would call Ada, see if they could help you figure out how to push it through, or I would put a 504 plan together, hand it to her and say, you've got 24 hours to come back with things that you want to add or subtract to this. We're gonna have a meeting, and then this is going into effect if you don't like it. I know.

Unknown Speaker 52:16
Yeah. So we, we we went through like that, what that first counselor said to us. So here in this school district, they go through K through four is that one school, or elementary considered elementary schools, there's a lot of elementary schools in this district. Then they have Intermediate School, which is fifth and sixth. And there's a few intermediate schools and then seventh eighth junior high, and then you go on to high school. So you hit four schools before you even graduate in the school district. But you keep on getting tossed to different counselor. So at the time he was diagnosed, he was in sixth grade, he would have been, yeah, sixth grade, and then they went home. So then I had to go talk to another or no fifth grade. And then he changed to sixth grade I had to talk to he got a new counselor in sixth grade. I just talked to that counselor her the same exact, it is almost verbatim, that they have it, like fine tuned for what you say to a parent, if they're asking for this, you say this. So just fine tune because we heard verbatim, this same exact speech, the same exact feel, we went back in. And that school year, it was a 5050 split of being at first we started out at home than it was a 5050 in school, not in school. And then they didn't go back full time until like February that year.

Scott Benner 53:32
Yeah, I know, I'd be up to the point where I put my hand up or somebody's talking and say you don't need to finish the sentence. I know where this is going. I don't care. We have a 504 plan by the end of the week, or I'm going to bring it outside help to get it done. You guys can't seem to get it done. That's fine. I'm going to bring somebody here to compel you to get it finished, and then just be done with it. Because once they know you're serious, somebody that school has a 504 plan. You're letting you're letting them push you. Yeah,

Unknown Speaker 53:59
we well, we wrote We ended up writing out the floor plan and to include also the celiac as well. And there's some things that kind of like overlay when it's celiac and T Wendy there are some of the same things. So we're overlaying that into one. Finally, this this year, this counselor has been a little bit more, a little bit better, but he's still not on one because we can't get it scheduled to have a meeting to discuss what we put into this 504 plan. I have been in at this point. I have requested with the nurse. We've had an really great nurses and then kind of nurses that were nurses are great. school nurses for nurses are awesome. But he's in junior high. It's a bigger school. I think she had a lot on her plate she was she had a different mentality when it came to tea one day we just kind of couldn't really connect that transitioned January of this year to a new nurse who has been phenomenal but the old nurse one and follow him on Dexcom. And that was one thing that we really, really wanted. That's literally the only thing that I care that the nurses do is that they follow him. He can manage everything else on his own dose wherever he feels like it whenever he needs to. Like, you know,

Scott Benner 55:16
you just made me laugh because I remember being in a in a meeting with a nurse at the high school. And she said, Well, that's not how I do it. And I said, I don't really care how you do, it

Unknown Speaker 55:27
doesn't really matter how you do it.

Scott Benner 55:29
This is how we do it. She stared back at me. And I was like, I'm not asking your permission, like, this is how it's gonna happen. You facilitate it and your opinions really unimportant to me. Thank you. Yeah, they don't think they liked me. But whatever. It worked out for Arden. And in the end, that's what mattered. They're so accustomed to not to dealing with people who don't know what they're doing. And then they take this, they, I'm gonna generalize here again, but they take this tiny bit of knowledge they have and try to lay it across everybody's situation. And that's just not okay. Yeah, I told her I was like, You got kids walking around the school, I know who they are. Their blood sugar's are 220 all day, and you're happy with it, because they don't get low. I said, when they leave here, and their head falls off and 20 years, or whatever the hell is going to happen to them. I said, you'll you'll think you did a good job. And my daughter is going to live forever with health issues. I said, I would prefer actually believe I said, if that's what you're planning on doing, then I'm going to withdrawal Arden from school and send her to a tropical island to live her life because she needs to be healthy more than she needs to be educated. And yeah, you know, if we're boiling it down your things not as important as her not being sick. So that this is what we're going to do. And this is how you're going to do it. And if you don't like it, I'd appreciate it if you just smiled through your teeth and did it anyway because they really don't care. I said I this kids had diabetes, and she was to her a one C is in the mid fives. Your opinion is just not valid. I probably you know, whatever. You don't know what you're talking about. So and you ruin my surprise that your son has celiac. I was gonna say

Unknown Speaker 57:07
that. Oh, sorry. I feel like I said at the very beginning, my tears I

Scott Benner 57:11
don't know, I don't pay. I'm just teasing. I pay attention. I just don't. When did the celiac diagnosis come?

Unknown Speaker 57:18
Um, so his two week checkup after being diagnosed, you know, they were in all the tests for it. And it came up as positive for celiac. But then we were told, you know, to get the actual confirmation he needs to have a

Unknown Speaker 57:32
biopsy or whatever they do there. Yeah, whatever it is.

Unknown Speaker 57:35
This copy. Endoscopy

Scott Benner 57:36
isn't good. That's your mouth. Right? Not your butt.

Unknown Speaker 57:39
Yeah, correct.

Scott Benner 57:41
That's better. I mean, I mean, which is

Unknown Speaker 57:44
even more disgusting if you think about because the endoscopy is like down through your intestines and then back up. I don't know, I don't like to break back up. Thank you. No, thank you.

Scott Benner 57:52
I'm more worried about where it goes. Initially. I think we're all seeing what kind of date I would be. I had to pick. If I had to pick I choose my Mac.

Unknown Speaker 58:07
Okay, well, you know, the aftermath of that. Who knows? I don't know

Scott Benner 58:11
who Daniel. I don't know what you're trying to tell me about your life but okay. So, look at you. You're not that Catholic. You were okay with that?

Unknown Speaker 58:20
Oh, no, I'm not that. I mean, I'm Catholic. I'm pretty Catholic, but I'm not that I'm, I'm I mean, I'm one of those fun Catholics.

Scott Benner 58:30
Daniel, I grew up around a lot of Catholic girls and I know what they were okay with and what they weren't okay with.

Unknown Speaker 58:36
No, no, no. Okay. No, moving on.

Scott Benner 58:42
Okay. Hold on a second. I can't wait for the note. I'll get words. It'll be it'll be I don't like the way you talk to women about sex. I was talking about myself. If you go back and listen, I said, I'd rather go in my mouth than my butt. All right, that was me talking about me. Now. By the way, I've only ever gotten one note like that. And I thought it was really misguided. I I thought it was more about the person's comfortability hearing about people talking about sex because then a ton of other people came into this thread, and said, I love the way Scott deals with with that stuff on the podcast. So anyway, I think it might have just been an older person who was uncomfortable with hearing a man talk to a woman about sex. Honestly,

Unknown Speaker 59:33
you can't be a part of this group with having without having some sense of humor. So yeah, I mean, you can't it's not allowed.

Scott Benner 59:42
Daniel, we are not going to rename the episode something about you and your mouth. Don't worry. It's going to be fun. Thank

Unknown Speaker 59:48
you. Thank you for that one.

Scott Benner 59:52
Celiac, I'm assuming he went gluten free after this.

Unknown Speaker 59:58
So after before the endoscopy he did not we had to remain a gluten but he wasn't having. Here's the thing. They call it a silent celiac where he wasn't having any of the symptoms. It wasn't until recently that he's had symptoms from celiac when he's been glutened. Okay, so no real celiac symptoms, so then it puts it in our head, he doesn't really have this as just a fluke, he doesn't really have this endoscopy comes out. He does have it and we wait like two weeks after the endoscopy to find out the results or whatever. And that was the part where, you know, we're on a virtual call with the doctor for that one. And he was the one that broke down.

Scott Benner 1:00:37
The boy your son, yeah, yeah. By the way, you broke

Unknown Speaker 1:00:41
down, and then that broke my heart. You know, saying that?

Scott Benner 1:00:44
him go through that. Yeah, that another thing happened. Yeah,

Unknown Speaker 1:00:48
because it's not just another thing. If you're told that, look, T one D Yes. This is going to be hard. But you don't have to change anything that you eat. You can eat anything you want, as long as you dose for it. And then that's taken away. He's been really, he's been eating anything you want anymore.

Scott Benner 1:01:07
Yeah, I'm sorry. He's been glutened is a it's an interesting sentence. Yeah, I felt like it was. I don't know. I just I just think that's really interesting. So okay, so he doesn't deal with that well, because they start telling him the things he can't eat in the office, great.

Unknown Speaker 1:01:23
Well, and he's seeing all these things. And at this point, we're going through our cabinets, we're going through our food, like, we're going taking him to the grocery store with us to see like, read labels, this is what you can do. This is what you can't do. And it was too much for him like it was it was young, but he has to do it. Because it's that's our reality now, right? You know?

Scott Benner 1:01:43
Yeah. What are his? What are his physical outward symptoms if he it gets gluten.

Unknown Speaker 1:01:49
So Now, granted, it's still not severe. Now he'll have like a stomach ache or just kind of, I don't know, stomach issues. We'll be going to the bathroom a little bit more for probably a day or two. But he is still like, no, no, it wasn't because that had gluten. And I'm like, Yeah, I think that it was at that restaurant that you really, really love. Sorry, that restaurant is probably off of our our list. Now. You know what I mean? So things are still kind of being taken away from him now that he's getting glutened but or that he's having reactions to it. But the other thing that we noticed is his blood sugar's are like go crazy, too.

Scott Benner 1:02:24
Yeah, you know, I am. Arden. Arden is. Today's Wednesday, Arden has been gluten free for six days now as part of a thing we're trying to trying to figure some stuff out. And we all did it with her just to, you know, out of like, solidarity. And I think I might be like losing some bloating, actually

Unknown Speaker 1:02:46
know for sure. So we are probably my husband and I are probably I'd say 85 to 90% gluten free. Our household is pretty much gluten free. There are some things like we don't the five year old has his things that have gluten in them. And that's, that's fine. But for the most part, we eat pretty clean ish. And we kind of already had before this as well. So but we I noticed now when I have pasta that is a gluten pasta, like it's full on, it's far worse than just like a normal pasta dinner like,

Scott Benner 1:03:23
Yeah, I'm already noticing for a few days, like, I haven't really cut that many things out of my bag. I was like I might have been eating almost gluten free to begin with. It's it's interesting. It really is. So I mean, I don't know, we're going to we're going to do it for a solid month to see if she gets any positive impact from it, then we'll decide moving forward from there. Yeah. But anyway, it's, it's a it's a burden, right? Like, it's just another thing to have to

Unknown Speaker 1:03:53
it's another thing and it's another like, it's already hard enough sometimes going to restaurants. And now there's another layer on that. And, again, we're in travel sports, where restaurants are a full on thing. There are times when we can't always take our food with us. You know, we've got to find a restaurant that he can have. It's not always we're not always going to a restaurant as a team where there's a lot that he can have on the menu besides a salad, you know. Also and

Scott Benner 1:04:21
I hope this doesn't sound pejorative but you live in a part of the country to where cuisines not exactly. I apologize. I've been there a couple of times the food's not great. And you know, it's not your fault. I once had a bagel in

Unknown Speaker 1:04:35
getting better Scott, come back and visit again. It's getting better it's getting it really is. I promise.

Scott Benner 1:04:41
I had a bagel in Indianapolis to 15 years later. I

Unknown Speaker 1:04:43
know you can't get cab, an Indianapolis bagel and think that you're gonna get an East Coast bagel Scott.

Scott Benner 1:04:49
Come on trying to get on a plane. Okay, and then not gonna

Unknown Speaker 1:04:52
be the same. You can't expect to have the same thing. Well, I'm not gonna go out to the east coast and exact and expect to get a great tenderloin. I was gonna

Scott Benner 1:05:01
say, what is it? You're about to say? What do they have?

Unknown Speaker 1:05:05
Yeah. It's like the pork tenderloins. Like that's what any, they are dang good. Don't worry about there aren't any gluten free ones. So

Scott Benner 1:05:12
I get smokey some pork, you would think it was good?

Unknown Speaker 1:05:15
Well that I'm into that like that, I'll do that we I will say our family actually does eat a lot healthier than most families. And

Scott Benner 1:05:23
I'm gonna go smoke a steak after, after you and I are done. That's actually what I'm going to do. I'm going to smoke a steak for myself. That sounds wonderful. I'm gonna put it on and then try not to forget that it's there when I run back upstairs and start editing because I have been known to forget about my food. But okay, so we're at the point now where I want to ask you if there's anything that we haven't talked about that you wanted to talk about

Unknown Speaker 1:05:48
the fact that you're my husband's man crush, Scott, we didn't get to that that is important. And I started crying and then it was all hell broke loose. Yeah.

Scott Benner 1:05:55
Does he have pictures of me? Does he quote me?

Unknown Speaker 1:05:59
No. Well, so when I we were coming out of what we thought we were coming out of honeymoon, we were having a lot of struggles. And just by chance and a local T one D group. Somebody mentioned the podcast so that I started following the Facebook group took me a couple of weeks before I started listening to podcasts because I that's not, I don't usually do that, like, podcasts aren't normally my thing. And then I started telling my husband like, you should listen to these. And it was taking him a while and he was like, okay, okay, and I kept pushing on him pushing on and pushing on him. And then all of a sudden, one day. He's talking to me, and he was like, Well, Scott said that we should do this. Scott said this. Who the eff is Scott? I'm like, What are you talking about? It's like, he's like the guy from the podcast. And I was like, Oh, okay. All right. So then I think it was a couple of weeks later, you had put something on the Facebook group of like, hey, reach out to me, if you think there's an interesting part to your diagnosis story, like, I want to hear it. And so I did. And right before he saw that he saw didn't see that I had reached out. But he saw that you would post that. And he mentioned he's like, Oh, you want to reach out to him? And I was like, Yeah, I will. Like, I'd love to. And he's like, he's not going to have you on. I'm like, telling me I can't do something and I'm going to do it. Like, why would you? So I reached out. You responded immediately, like within five minutes. And I turned and looked at him and like, showed him my phone. I was like, see this? I'm gonna do that. He's like, What

Scott Benner 1:07:29
are you did? You mentioned celiac? And I? I was trying to get more people to talk about that. So it was an easy one. Does he ever asked you to call him Scott during sexy time? No, okay, no, no, if it gets to that, please send me an email. I'd like to know.

Unknown Speaker 1:07:48
I'll let you know if it does get to that point. I don't think that it will. But

Scott Benner 1:07:52
you've changed me completely. I used to think like, I want somebody to name a baby after me. And now I'm like, oh, maybe that would be better.

Unknown Speaker 1:07:58
No, I think like, he was asking me this morning. He's like, do you like need me to stay in case because he knows that I was gonna cry and probably break down at one point. He was like, in case I need to take over and I was like, Get out of here. There's my podcast.

Scott Benner 1:08:11
Well, I, first of all, I'm very happy that the podcast helps you. That's terrific.

Unknown Speaker 1:08:16
It I can't tell you how much it does. Like no words can describe how much it has helped us. Like, once we got a therapist for our family. That was a huge marker for us. Once my son was able to go actually physically go to camp. That was a huge point for him. And once we found the podcast that was I know this is probably gonna sound funny now at this point, but like, that was a huge moment in our marriage in our, our relationship with us. So

Scott Benner 1:08:46
it's been good. I'm glad I saved you some money on this journey. Is that what you're saying? Yeah,

Unknown Speaker 1:08:51
I mean, maybe it was getting I mean, we were all the whole house got very heated for a while. Plus we were dealing with like, everybody's home. Everybody's working from home. Everybody's doing school from home we had our celiac led to a finding out a mold situation because as we were cleaning out our kitchen, we realized that there was mold, we had to do a full renovation. So it was just a lot of chaos happening within like a four month stint. That was like, This is too much. We're on each other's throats now. So we found help along the way. It took us a while to get us there but we have found help around along the way and it is we are in a much better spot.

Scott Benner 1:09:29
I really got that's a wonderful review of the show. Much better than the one I received recently which like to hear it. So I don't know this one's hilarious. It just made me think of it while you were talking. I am so fascinated by this. It's it was a three star review. But then I read it brilliant information and great tips offered on the podcast. I've gained insight on management which has resulted in better control of my type one. Jenny Smith adds credibility to the material provided and I'm Mike, my God, this is a great what a wonderful review of the podcast. Probably just clicked on three stars by mistake meant to make it five stars. Last sentence, the host, Scott talks too much and cuts people off. Oh, no. But I thought the person who wrote this, here's this. I thought still a terrific blog i What a great review. The thing I don't get is How do I lose two stars for that little bit when the rest of it is brilliant information, great tips. I'm better, like my health is better. I've gained insight, big words, two, three stars. And then, and then months later, after the review had been left, I think they went back and altered it and took away another star.

Unknown Speaker 1:10:48
You know what, Scott? That's called a hug and a punch. That's a hug and a punch right there.

Scott Benner 1:10:54
I think she's gonna take away another one. Like, a couple of months. I think she must be. First of all, I say she, I could be wrong. But well, you could be

Unknown Speaker 1:11:03
the the males seem to be very silent. They all listen, but they're very silent.

Scott Benner 1:11:08
Nobody, nobody speaks up too much. But that's fine. So anyway, the person, not she. But I think they're gonna take away another one in a couple more months. I think they listen intently. And then I cut somebody off and they're like,

Unknown Speaker 1:11:21
What did you hear more from that person?

Scott Benner 1:11:23
I would love. I would love for the person to contact me. Because I wonder if I mean, it's just a very east coast way of speaking. I don't sit quietly until you get every last word out of your mouth. And I don't I don't believe I cut people off. I see it as a spirited back and forth. Like it is actually how I think about conversations. I think that monologuing followed by a monologue followed by a monologue is kind of boring. So and not for nothing. Sometimes people say something that make you think of something that kind of has to come out in the moment. And sometimes they're going on and on. And it's getting boring. And I'm the only one that I'm the arbiter of what's boring. So yeah, if you don't like it, go find another podcast. Listen to that one. But I don't know how you write four incredible sentences followed up by one where it's just like, Hey, guy talk, by the way, he talks too much. I'm gonna curse. It's fucking podcast. What should I do? What should I do? Exactly? Should I not totally

Unknown Speaker 1:12:21
appreciate the F bomb? Scott, thank you so much.

Scott Benner 1:12:24
Should I do? Should I not talk? Why? I'll just go. Here's what I'll do for now. What's what's the point here? Anyway? It just popped up in my face the other day. So I just,

Unknown Speaker 1:12:38
you know, I'm a bit of a talker too. And I know there have been a few times within this conversation that I've cut you off. I thought, you know, immediately, should I just cut them off. And I don't care. Because I have something to say. And this is what I was saying. Now,

Scott Benner 1:12:49
there's nothing wrong with that. Also, you're completely missing. There were a couple of times I had to run you over because you wouldn't shut up.

Unknown Speaker 1:12:56
I'm a talker, man. It's like, I'll tell you all the things. I'm an open book, and I will spew it all out there. It's for anybody to hear absolutely

Scott Benner 1:13:03
perfect. I just would love to know, does this person see it as rude? Or does it impact their ability to follow the conversation? I don't know.

Unknown Speaker 1:13:11
Exactly. But I would I think you're spending too much time thinking about this random person. Well, I

Scott Benner 1:13:15
mean, we just did it now. Because I'm talking about on the pocket. Yeah, you gotta you gotta like, let that one go. But other than that, I've not thought about it. I just what you said made it pop into my head. Like, I thought when you said what you said about the podcast, I was like, Oh, that's a lovely review of the podcast, which made me think, oh, last night, I saw this thing happen. So anyway, I don't want you to think that I've thought about it before I you know, after I saw her that I will again after we stopped talking about it just I found it amusing. Anyway, as we move on, so your husband has a crush on me. The kids is the pocket. It's actually helpful for like management stuff, or did you get more community out of it? Because you did talk earlier about how concerned you worry that your son wouldn't know another person with diabetes. We

Unknown Speaker 1:13:57
got both. So at the beginning, I was very concerned about him. And like him having somebody and what I've realized is that we also needed needed people. That was parents like we needed a support group we needed the podcast and the Facebook group. And I don't really follow a lot on Facebook. I don't post a lot I posted a lot during November for diabetes Awareness Month, but then like, it was almost cringy because I'm like guys that's posting too much like am I doing you know too much with this? I don't know. But that's not we don't post a lot on on Facebook. We don't get that involved and things like that. But how like, I wouldn't have Facebook anymore. Probably if it wasn't for the podcast, the the juice box group.

Scott Benner 1:14:46
Can I be honest with you? I wouldn't either. Yeah, yeah. It's just it's it's such a good group. And I really, yeah, but I don't, I don't know. I don't know if I've aged out of it or what I've done exactly, but there Just not many times in my life that I think, oh, I should share this with other people who will virtually see it. And I'll never know if they even saw it or not like it just, I haven't thought about it in a while like that. As a matter of fact, sometimes I don't ever log, like so I see Facebook through an account that is the owner of the Juicebox Podcast group. And I have a private account, but I haven't switched back to it and so long that sometimes when I do, I'm inundated by things so much so that I'm just like, Yeah, I'm not going back there. So yeah, yeah, yeah. Anyway,

Unknown Speaker 1:15:30
I mean, I think at the beginning of all that, we were so concerned with his mental health in this, and what he was gonna get, and making sure he had support and had others that he could reach out to, that we put ourselves on the back burner for it, you know, yeah. But, you know, I would say like him going to camp was the best thing that could have happened to him. Like, meeting the other kids. Was everything we noticed immediate shift with him, like, great shift after going to see a therapist for the family. And then great shift after going to camp and then also we connected with a local T one D athlete who's in high school at our, in our district, who kind of is a little bit of a mentor towards him. Okay,

Scott Benner 1:16:20
at Archie Manning High School. Yeah, exactly. All right. Excellent. Okay. Are we done? I feel good about this.

Unknown Speaker 1:16:33
I feel good about it. All right.

Scott Benner 1:16:35
Yeah, we've done it. Awesome. I feel very good. Oh, no, don't don't thank me. Thank you. What's your let me ask you like one question going out the door. What? Like, gluten free thing. Have you found that is an absolute must have. I'm not a shining endorsement. Okay. There's no, I know,

Unknown Speaker 1:17:01
there's like a couple things here. One, there's a particular brand of like, because it's hard for baking, right? Baking gets? Yeah, it's not the same. And that everybody has such an emotional tie to food sometimes, especially when it comes to like those traditional or traditional family traditions of baking and things like that, like, and then when it's not quite the same. It's still, you know, yeah,

Scott Benner 1:17:24
I agree. I actually last night, Arden said to me, hey, those sugar cookies I make, they have gluten in them, right? And I said, Yeah. And she's like, alright, and I said, You never eat them anyway, she just makes them for other people. This is so interesting. You brought this up. She just makes them and she gives them to people. And I said, You really never even eat them. She was but I can't even like stick my finger in the ball while I'm doing it. And I was like, probably not. And I said I made cookies for cold the other day, and I didn't touch them. You know, because I'm doing this with you. And I said it wasn't bad. And she's like it, but I think you're right about that. There's something about the I was going to pageantry, but there's something about the process of of just baking for people. It's nice, you know, and you get done and you eat one and see how it is and and you know, then you give the rest of them to somebody else. But I take that as a point and people to get these like almond flour or something like that. That's gotta be terrible, right? I mean, almonds. Is that right? Um, if you're gone. Hold on a second. No audio from you. super interesting. Your your you can hear me right, Daniel. Now you're gone. Interesting. It's not me. How about now? There you are. What do you do? Well, I unplugged it. I'm back to where we were at the beginning. Now you're just talking to me through the laptop. Okay. All right, well, then, then we're done. It's an official ending of the podcast.

First, a huge thanks to Danielle for coming on the show and sharing her story. And of course, we want to thank Ian pen from Medtronic diabetes and remind you to go to Impend today.com. To find out more and get started today. Let's also thank the Contour Next One blood glucose meter. Go get yourself an accurate meter. Get the Contour Next One at contour next one.com forward slash juicebox. Thank you so much for listening. For supporting the sponsors. Please use my links. If you've enjoyed the Juicebox Podcast tell somebody else about it. Tell them how to subscribe and follow you where my heart when you do these things

if you're looking for community around diabetes, please check out the Juicebox Podcast private Facebook group. It's called Juicebox Podcast type one diabetes Do you have to answer a couple of questions to get in? That's how you know you're in the right place. Once you're in there 30,000 members, all using insulin loving somebody who does having great conversations about management life. Everything you can think of is there Juicebox Podcast type one diabetes on Facebook. Seriously, go check it out. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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