#1687 Knowing Doesn’t Mean Ready

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Lauren, a former diabetes pharma rep and mom to a seven-year-old with type 1, shares her diagnosis story, bold insulin approach, looping plans, and how GLP-1 meds changed Scott’s life.

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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
Here we are back together again, friends for another episode of The Juicebox podcast.

Lauren 0:15
Hi, my name is Lauren. I am the mother of a seven year old type one diabetic.

Scott Benner 0:21
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Lauren 1:56
My name is Lauren. I am the mother of a seven year old, type one diabetic. Do you have any other kids? Lauren, I have one other son. I saw I have two boys. My oldest son is 10, about to be 11, and my youngest, who is my type one, just turned seven, the end of September.

Scott Benner 2:13
Okay, all right, yeah. How long has he had type one?

Lauren 2:17
So he was diagnosed in September of last year, so one week after his sixth birthday, oh, no kidding, received our diagnosis,

Scott Benner 2:23
yep, just slightly over a year, yep, okay. Well, this will be interesting. I appreciate you doing this with me. Thank you for sure. Yeah, what made you want to do it well,

Lauren 2:33
because it's been such an important part of our journey and being successful with managing him this first year that I felt like it could be really important to share our family's story and hopefully make impact on others just the way they have impacted me, and connect with someone somehow to help them get through some of the hard times. Because it's definitely a marathon managing this and taking this on, and your podcast has, like I said, help my family immensely. So I hope to share and do the same. I

Scott Benner 3:03
appreciate knowing that. Thank you. Yes, and I'm sure you will. I'm excited to find out all about you guys and and see where where this leads. So let's find out first, let's go over the simple stuff. First, any other autoimmune with you the kids? Are you married? Yes, I'm married, a husband or extend a

Lauren 3:24
family, none, nothing that we are aware of. I will say that my mother is adopted. So we are lacking some of that family history from our, you know, genetics that we are aware of, however, nothing that we are aware of with any other

Scott Benner 3:39
autoimmune okay. How do you like being the kid of an adopted parent? It doesn't

Lauren 3:44
bother me at all. You know, I still had grandparents from the parents of my mom who were adopted her. You know, as you get older, and if you have health things, that's when you start to notice, like, oh yeah. I can't tell you much about some this side of my Yeah, you know, family makeup or my genetic makeup. But other than that, it's been absolutely

Scott Benner 4:06
fine. I always felt like being adopted was cool because you was almost like a choose your own adventure, right? You know, yeah,

Lauren 4:13
and it's a blessing that it's out there and that people will take that on. And, yeah, you know, I appreciate

Scott Benner 4:19
it. That's very cool. Okay, so your father's side? How about your husband's parents? Anybody I'm talking about, like celiac, thyroid, nothing you can find. Okay,

Lauren 4:29
my husband's cousin has Crohn's disease, but I don't know that they consider that autoimmune really, like

Scott Benner 4:37
I got you. Well, do they what I'm going to look while I ask you what happened that you noticed that your child needed medical care?

Lauren 4:46
Yeah, so background on me, a little bit, is I have been doing pharmaceutical sales since I graduated college, so that has been my or was my career, and so I was in. The medical field, if you will. And for the 19 years that I did it, 12 of the years was spent in diabetes. And so obviously the focus is more around type two diabetes, with just how America is with type two and where the pharma companies are putting a lot of their technology and research into type two, because that seems to be a big, big problem in the country, but you still get background knowledge, and they do a very deep dive into understanding the disease state that you are going to be walking out into the offices to talk to doctors and nurses about. And so I had been very, very well versed in in diabetes, if you will. Yeah, my son was we had a unique situation where my husband actually we are at a soccer game for him, and he is finishing up the soccer game, and where his game was to our home was about a 12 minute car ride, and my little six year old son is in the car crying that he needs me to pull over so he can go to the bathroom. And I said,

Scott Benner 6:08
No. He said, No. You're like, no, yeah. I said, No, no, you can

Lauren 6:11
hold it. You can hold it. It is a 10 minute drive. And my husband's like, why are you being so mean? Please just pull over. He has to go to the bathroom. I'm like, we are not pulling over to go to the bathroom, if he cannot hold it, he has diabetes. Did you say that? I said I said that. And my husband's like, gosh, Lord, You are so rude and mean. And you think everyone has diabetes, because that's your job. And so Saturday, Yep, that was Saturday. And then, like, there's no hard feelings. My son was able to hold it until we got home, he went to the bathroom, and everything's fine. So the day goes on, and it's really just the three of us at home that day, because my other son went to a friend's house for a little bit, and so we're just spending time at home, and my husband's he's asking my husband for food all the time, and

Scott Benner 7:01
he learned the day before not to ask you, right, right? Yeah, no.

Lauren 7:05
Mom's not helping me out with anything. So he's, he's definitely leaning towards dad this day. And you know, I don't notice anything else, you know, I say that, but I'm like, when he tells me you're crazy. You think everyone has diabetes, I go back to the fact that I probably, you know, I know there's no way my kid has diabetes. I I'm just aware of the symptoms, right? And that I am, you know, because when you start learning and doing a disease state with pharma, you often feel like you become a hypochondriac and think you have everything that they're teaching you. So I didn't think much of it. And then the next morning, we wake up and everything's fine. We're giving them breakfast. And, you know, on the weekends, we do more fun breakfast and my stuff, both my boys are having cereal and apple cider, which I like, want to just have a stroke about now. And my husband says, Hey, is there a way that we can actually find out if he really does have diabetes? And I said, Yeah. And I said, Are you serious? And he's like, yeah, how can we check? I'm like, go upstairs, take him upstairs and put him on the scale, and I'm going to go find my blue comforter that I had because when I was pregnant, I decided I want to watch my sugar in case I were to get gestational diabetes just again, because I was in the industry, and I became fascinated with that, yeah, and so worried that I would get gestational diabetes. So I have the six year old glucometer, and I had weighed my son the week before for his birthday. So I measure him, and I weigh him like, how old are like, how tall are you? How much do you weigh on your six your sixth birthday to document and just know. And he had, he was 66 pounds on his sixth birthday, and my husband screams downstairs, hey, he's he's 60 pounds. And in that moment I knew. I said, What is how much does he weigh? He

Scott Benner 8:49
said, 60. Yeah, skip the glucometer. We could just come back down.

Lauren 8:52
Yeah, I knew in that moment. And so, okay, I get the glucometer out anyways. I said, Okay, bring him here. We're going to do a finger stick. I poke his finger and it says 564, wow. I said, Oh gosh. Well, this is old. This is this thing is literally six years old. We haven't used it. There's no way, so I poked my other son's finger. Said, Okay, Brian, it's your turn. His isn't blood sugar is 95 so I'm like, Okay, it's not broken. I'm like, Okay, Ryan, he's going to be diagnosed with type one diabetes. Go get a bag and we have to go to the hospital, but I'm going to call the pediatrician's office first, because our pediatrician's office has like, weekend hours, and someone always on call for them, and I'm just going to call them to see if they can do anything, if we can go to them before we actually have to go the hospital. Because I'm delusional at that same point and thinking, Oh, they can just write me a prescription for insulin, and everything is going to be fine. Is that where your head was? Yes. And I call the pediatrician's office and talk to the nurse. You know my son, I just checked his blood sugar. It's 564 you know, I do diabetes. I know what I'm talking about. Like I had Lantus, I've had humolog, I've had all the insulins. I have all the GLP ones. I I know it all. Can you just, if we come into you, can you guys just give us a prescription for some insulin and tell me what I need to dose them and we'll be fine? And they're like, the lady is, like, You're crazy. Lady like, you need to go to the hospital. So I'm like, okay, okay,

Scott Benner 10:13
I don't do that here, but that's not right.

Lauren 10:16
I know. I know. But in my mind, I'm thinking, this is everything's going to be fine, and just, I don't really want to go to the hospital. We go to the hospital, we pack up, and I tell my husband, like, you need to text this person and this person and this person, because I knew he had acquaintances that had children that had type one diabetes. So I'm telling him, You need to find out who their pediatric endo is. And I'm just going into this mode of we got to get a proper doctor. We got to do all of the things and find out other people's experiences so that we have a good one. Because we don't have a pediatric endo in our area. We don't eat we have, like, one endocrinologist that's here too. Like, we live in South Bend, and it's kind of like a black hole for medicine, if you ask me, just because we're so close to Chicago, we're so close to University of Michigan. We're so close to Indy, and so I don't feel like it's a great spot for medicine, if you will, and specialists. And like I said, in the diabetes world, I we, I knew we didn't even have a pediatric endo in the area. He starts texting his friends, we go to the hospital, and we're walking into the ER. And I tell them right away, I'm like, my son's about to be in DKA. I need someone to see him really fast and get him insulin. And so they did take they took this back really fast in their mind, though, my son's already a type one diabetic because comes into the hospital and says that. And so they're treating him like they think he's a type one and the guy, yeah, right, because they're like this. They're saying this type one diabetics probably coming in in DKA, because something went

Scott Benner 11:46
wrong. And you have a little too much context to seem like a person who just figured it out today.

Lauren 11:50
Yeah and Yes, right? And I honestly Yes.

Scott Benner 11:55
Where you go on, Rob's gonna put the ads right here, but I need to say because it's gonna get away from me. Crohn's is an autoimmune condition. We got pretty far away from it, and I can't believe

Lauren 12:04
I know that's okay well. And so when I Google it and research it, they're like, it's a different type of autoimmune though, like, where it's,

Scott Benner 12:12
well, I mean, you know, it's an immune immune reaction. It causes chronic inflammation. You get, like, thickening of intestinal walls, inflammation, etc. I mean, I You're right, church, wrong, pew, maybe. But, like, it's an autoimmune inflammatory disorder, yeah,

Lauren 12:28
so that that is there, but when I told our doctor, he's just, like, poo pooed that, like, that was

Scott Benner 12:33
no big deal, yeah? Well, you're in South Bend,

Lauren 12:35
so, well, no, I'm in India at that point. Oh, sorry, but, and I do like

Scott Benner 12:40
him, I appreciate I'm sorry I cut you off, but go on, we're back at the hospital. They're thinking he's an established type one,

Lauren 12:47
yeah, somewhat, they get us back very, very quickly, because I think that's literally, because I use the words DKA, yeah. And they check his blood sugar, it shows I on their meter. And they push us back into a room, and like, they, you know, start getting ready to do a pic line in him and wanting to draw his blood. And so they come in like, so your son's a type one diabetic. And I said, No, no, you're going to diagnose him with type one diabetes. This is what happened. I just have a unique background that I'm I'm aware of what's happening. And they're like, oh, okay, okay. And, you know, are you sure it's type one? I'm like, yeah, pretty sure. I don't know what else this would be. He's lost six pounds in a week. I did a, you know, check the sugar at home. It's, you know, my meters clearly working, yeah, just, when can you get him some insulin? Like, because I'm just thinking to myself, he's going to be in DK, soon. Like, how do we get him? I just want insulin sooner than later. And, you know, they take their sweet time. They run all the lab work. And the doctor was really nice and responsive to me. That was the ER intake doctor. And yep, you're probably right. He's like, all the lab works coming back because a 1c shows 10.3 there's ketones in his urine. Obviously, we're gonna roll him upstairs, get him admitted into our pediatric unit, but he's not in DKA, good, so, okay, great. And I think that that moment like also made me think this is not a big deal, like, everything's gonna be fine. Everything is fine

Scott Benner 14:18
because he wasn't in a dire situation. Yeah, it lessened the weight of it. For you, today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a 1c on this podcast, did you know that the Omnipod five was shown to lower a 1c that's right. Omnipod five is a tube free automated insulin delivery system, and it was shown to significantly improve a 1c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod every day since she was four. It has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod five for yourself or your family, use my link now to get started. Omnipod.com/juicebox get that free. Omnipod five Starter Kit today. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox you can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juicebox the Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes. The Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends, and the app will also provide you with a projected a 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juicebox when you use my link, you're supporting the podcast, dexcom.com/juicebox

Lauren 16:19
head over there. Now, for me, in that moment, I think it did okay, yep, in that moment, and my husband and my older son are in the corner crying, and my I'm trying to make my other son who's actually going through this, like you're brave, like this is really amazing, like you're super, like you are a superhero. You are you are selected to do this because you're strong and you're tough, and mommy knows how to do the shots, and it's, you know, I have pens, like I had demo pens at my house from my job, you know, to hand out to people to know. So I'm, like, in that moment, I felt like this is no big deal. And what I was never trained on and never understood was the fact of, like, the variables and all of the things that impact the blood sugar. That's not just food. Yeah. And I was trained that insulin works because it does work. Insulin can work if you use it properly, right? It will get your a 1c down. So I was confident that things were going to be okay. You were

Scott Benner 17:13
just throwing at any platitude you could think at your son to just to pump him up and keep him thinking, Do you think you were doing that for him, or do you think you think you're doing it

Lauren 17:21
for you? And in the moment, totally doing it for him. And in that moment I also I'm believing everything that I'm saying. I'm like, Okay, this, this is no big deal, you know, my he's, this isn't something that could be, you know, 10 times worse not. And trust me, I know, I think diabetes is the worst thing that could ever happen. But there's also awful, awful things that can happen to anyone that don't have, you know, treatment options and things like

Scott Benner 17:47
that. Yeah, your perspective has changed over time,

Lauren 17:49
absolutely sure. So they wheel us upstairs, and I'm telling them, I need X, Y and Z. I need a CGM. I need all of these things. I want to make sure you put me on this particular insulin, you know? And I remember we were there at 11 o'clock, and he didn't get his first shot until five o'clock. And I just was so frustrated by that, like, what is taking so long? Like, what are we waiting for? Like, what is going on? Like, we're upstairs and no one's has any urgency to do anything. The hospitalist comes into the room, walks in and tells me, You know, I can't give you insulin yet because he, like, I don't know if he's a type one or a type two. I'm look at the guide saying it's 100% of type one. I can't even believe that you would suggest that this is type two diabetes. In what world is this type two

Speaker 1 18:35
diabetes? Yeah. And he's an odd breach,

Lauren 18:39
for sure, right? Yeah, I mean, and then in that moment, now I'm angry, and everything changes, because I'm like, we got to get the hell out of here, because they don't know what they're doing. No one knows what they're doing. I mean, this is classic textbook type one diabetes, and no one knows what they're doing. Okay, yeah, so that, I mean, that's part of it. And then they didn't want to give me a CGM. Oh, and they're like, you know, insurance doesn't really cover that. My I'm like, my insurance well, and if they don't, I'll pay cash for it, yeah? Well, we really don't want to give that to your son. You know, it's not the way to learn how to manage this, and it's not compatible with the hospital

Scott Benner 19:13
system. The way to learn about diabetes isn't to be able to see your blood

Lauren 19:17
sugar exactly at all moments. So it's you have to learn how to do it without all the technology. Okay, right? And so it was a bad and we boom, and then they're trying to reference us to this random endo in a town two hours away. And I said, No, I need to go here, but we are not going to do a referral for you there. Okay? Like, why not? You know, it just, it was a very combative relationship right after that interaction. Yeah,

Scott Benner 19:43
and Lauren, in fairness, I've known you 20 minutes. You have a strong personality too, you know what I mean?

Lauren 19:48
Yes. Oh, very, very much so. And I was comfortable with my job interacting with doctors like my job has been to challenge doctors and what they're doing and be comfortable to make them uncomfortable. All and ask them why they're doing what they're doing, and help me understand why you make decisions that way. And it's very obvious to know when they care and when they don't care, and they're just kind of doing the rounds.

Scott Benner 20:12
Yeah, it's an interesting mix. Like you have more information than most people, not all that you need, obviously, because you think, oh, it's going to be easy, and you don't really know the whole thing. And you're used to challenging positions, so you're not in a position of like, Oh, thanks, you're so great, right? That's not coming from them, which they might not appreciate, or, you know, whatnot. And then they've got their rules the way they do things, and before you know it, you're right where you landed. Yeah, you know, it's funny when you said it's not, you know, I didn't think it'd be that hard. It makes me think of, I'm sorry if you've never seen the movie Moneyball with maybe you haven't. There's this great scene where Brad Pitt is like the general manager of the Oakland A's, and he's going to try to get this player who's kind of broken down to play for him. He wants him to switch positions, and he's there with one of his coaches as well, and he and the guy says, Well, I've never played first base. And he goes, Oh, don't worry, it's easy. And he turns to the coach, it's with him, and he says, Tell him wash. And the guy goes, it's incredibly difficult. And he goes, that he just pivots so funny, that the next line, he goes, Well, anything worth doing is and that's sort of like, I don't know, like, for anybody who's seen the movie, they're laughing right now, everyone else is like, you could have done a better job explaining that. I like the idea of what you learned from that moment to where you are now, because I think it's going to make your story really interesting moving forward. Like, because you had a pre conceived notion and then you went home and found out the truth. So exactly when does that information start hitting you? You're home now, like, what did you shake out of them? Did you get a CGM?

Lauren 21:45
So yeah, they did. They prescribed it after we were discharged. Technically, the the nurse or the diabetic educator at the hospital came in and helped us put it on him. Okay, and I will say too that when we were in there, they were like, comfortable with his blood sugar being in the high two hundreds, and me getting in an argument with them. So they wanted me out of there quick. Because, you know, they would only come in and do the random blood sugar temp tests when they had it on their timer, which was, I don't know, two to, like, three times a day. And then, like, before I was eating, he they did one of his random checks, and it was like, 280 and I'm like, Oh, he needs insulin for that. Like, let's correct it. And because it has been two hours and or three hours, and they're like, no, no, no, this is a good number. And I said, You guys, this is not a good number. And what world is this a good blood sugar to you? Yeah, this is bad medicine. This is terrible medicine. And I would let you just so you know, the second I leave this hospital, my kid's blood sugar is anything above 250 at this time of day, I'm giving him insulin. I don't care how many shots he needs for it, you're not doing your job right?

Scott Benner 22:50
Was that their argument, that it was another injection, you're saving him from an injection, or was their argument we're comfortable with the number, the number is okay with them.

Lauren 22:57
And I said, why everybody were like, You worried he's coming down too quickly, like, what? What is the concern? And they couldn't even answer that, you know, like, because I understand that if they're dropping his blood sugar too fast, he's gonna feel terrible, potentially dangerous, yada yada yada. But all I could think about was getting him into the normal range, which I knew was at that time, the 70 to 180 and never was it in that range when we checked him at the hospital. Yeah,

Scott Benner 23:20
no, they're not. They're definitely not shooting for that. They don't Right, no, they don't have the bandwidth for that, even if they had the knowledge right, truthfully.

Lauren 23:28
And so I'm calling, since they won't refer me to the end that I'd like to, because they don't have a relationship with that group, I'm calling this children's hospital down in Indianapolis every single day, multiple times to say, my kid was newly diagnosed. We have no education up here. We need help. And we got out of that. We went into the hospital Sunday, got out on Tuesday, and got into Riley's Children's Hospital down on Thursday morning. Very thankful for a physician who told us that was willing to see us at like before he saw patients, squeezed us in, got us in early. And so I think the big thing to that was, is that when I said we had no education, which the hospital thinks, they gave us education, but I knew that they didn't. They got us in, and they prioritized that for us. So it's kind of like saying the right things at the right time, and I want other parents to know, or people to know, like you have to advocate for yourself, and if something doesn't feel right, do whatever you need to do to get a better result, or someone who's more receptive to you.

Scott Benner 24:30
I'm afraid that for most people, though, they're not going to have enough context to know that something doesn't feel right, you

Lauren 24:35
know, I know, and that's what's so often you're in this like fight or fight situation to where you're just trying to get through and make sense of what's actually happening. I will say when I had my husband reach out to people, and I reached out to two people that I was just kind of like vaguely knew like that. I knew had children with type one diabetes. One girl had shared with me what you need to do immediately is order a sugar pixel, demand a CGM like. I was and then on top of it, listen to the Juicebox podcast. So that was the blessing. So in that moment, while you're awake at night, sitting in the little rocking chair next to the bed, I listen. My first episode was being bold with insulin. Oh No kidding, and yeah, and I'm like, This is so great. I need my husband to listen to this, because if I say this, it's not gonna be well received, but the second he does listens to this, it will resonate, and it will be someone else telling him, and not me, being overly aggressive, and it was the best thing I listened to in that moment, because, again, I was pro insulin. I knew it worked. I knew how it worked, and I knew that if it wasn't working, you're weren't injecting it properly, or you were not dosing it properly. It was just really good to have someone and, you know, they train you, even at my job and they at the hospital, they want you to be afraid, like deadly afraid of the low blood sugars, yeah, which definitely are scary. But, you know, I can't remember how many, just normal primary care doctors I said I would tell me, like, we're not worried about low blood sugar, we're worried about the hyperglycemia, and I'm seeing the consequences in these endocrinology offices of people with high blood sugar and uncontrolled diabetes. I'm never hearing stories which I know exist, of people having problems with the hypos. You can bring them up usually, you know? And I don't want to minimize that people have severe hypoglycemic episodes that can be very scary and detrimental by any means.

Scott Benner 26:27
Well, you know what, though, like, it's such a human thing, right? To just pick one of the other black or white. Like, why couldn't the middle be okay? Why is it like either or like, you're either going to be high, you'll be low. I'm like, why is that the case? What if we were stable and in a good spot? Let's go for that. Yeah,

Lauren 26:42
yes, exactly. And you know, they just, they'd want to keep you alive in the moment, and they're not worried about what it's going to look like for you in 25 years or for your child.

Scott Benner 26:51
Nobody's thinking that far ahead. Apparently, I tell the same story all the time, like, you know, when ardent, you know, first diagnosed, and her blood sugar is really high, and I finally, kind of, I have enough wherewithal to say, like, Is this okay, you know? And they're like, oh, yeah, yeah, cuz she's only two. And for a while, I was just telling someone this last night, like, for a while, I thought, oh, there must be some medical or physiological reason why high blood sugars don't impact two year olds. And then I then realized, like, one day, that's ridiculous. And I pushed farther and got the answer back. Well, no, it's, you know, it takes 30 years she told me for diabetes complications to start. And I was like, but she's two Exactly. Oh, see, I'm like, so you're telling me that we're shooting for diabetes complications when she's 32 like, does that make sense to you? Exactly? That's when I was like, I was out. I was like, okay, that these people don't know what they're talking about. I was at a good endocrinologist office too, right? Well,

Lauren 27:47
and that's, that's where I my frustration comes in, too, is, and I love the confidence that you have. I love that you figured it out, you know, because I feel like I had an unfair advantage to a certain extent with going into part of this, right, with just some of that background knowledge and but again, I was trained to train people to be afraid of high blood sugars, like that was my job to discuss the consequences of high blood sugars. Yeah, so that's like, I'm deadly afraid of the highs.

Scott Benner 28:16
Yeah, that's your step one then, because that's where, that's where all your education stems from

Lauren 28:21
yep, yep. And I understood what you can do, and I and then in that same moment, because obviously I'm getting frustrated. I'm like, Okay, I need to think, like all these other medicines have these additional benefits, like that, it would totally be off label use. But like, I want him on these. Like, when would it be appropriate to go on? You know, an sglt Two. When will it be appropriate to go on. I would love for him to be able to be on a, you know, a GLP, 1g I P receptor agonist, if possible. But I know that's crazy in the moment, but I'm like, it's, there's

Scott Benner 28:52
your head though at the time. Yeah, you're kind of going through the entire thing. Hey, did it work when you said, I'll show the podcast to my husband, and he won't just think this is me being a lot, like, did that work for you?

Lauren 29:03
So the best thing that happened we go down to Riley's in Indianapolis, and our doctor. So I hadn't told him about the hospital yet, because I'm just trying to get him to, like, hang in there in this moment. He's also the man who, like, almost passed out when I got my epidural when we're having our children. So, like, I was so worried about him, like being able to give a shot, like that whole getting over that mental barrier, and he's done an excellent job, so I didn't want to overwhelm him in the moment. But we go down to Riley's, and we have this, like, 7am appointment with our new end now, and my husband goes in and says, I was trying to tell him some of the certain parts. They're like, we want an A 1c below seven. That's the goal. And my husband's like, No, we're going to have one below six. And I said, Okay, great. Like, I don't even know where he's getting this, but that's great. And then he's like, You know what you should listen to, the Juicebox podcast. Is what our endocrinologist said to us in that moment. And then he started doing it from it. Again from the endo saying it. I don't know that if it was someone else saying it, he would have done it. It was the endo that

Scott Benner 30:05
said it. You had an acquaintance and a doctor tell you to listen to the podcast in short order. Yes, that's and it

Lauren 30:11
was the best thing. And I honestly took more of it from my acquaintance, friend that I had met, and then he impacted him more coming from

Scott Benner 30:21
the doctor. Well, now knowing that the doctor told you about the pockets, it makes me feel terrible to tell you that the worst bagel I've ever had in my life was in an adapt I listened to you say that before. I know I mentioned it often not because I'm out of things to say, but because I'm trying to change the world. You poor people, right? I know that you believe that's a bagel. It's maybe it's one of the bigger tragedies.

Lauren 30:42
I would agree. I would totally agree with you, horrifying.

Scott Benner 30:45
Well, that's awesome, so I'm glad you Yeah, and then, and it got your husband on board,

Lauren 30:49
yeah, and I had never listened to a podcast before that. I had never done that. And I thought, you know, okay, he's, he's starting to do this, and he took ownership and started to do that, and would come home and talk to me about them, and really quickly, like a few of them, that stood out were, you know, ways that we needed to figure out and how to manage this. And he started to listen to episodes with Jenny, and he automatically, like, took to her and her approach, and appreciated it and figured out a way to hire Jenny right away

Scott Benner 31:23
as well. Well, you got that whole Midwestern thing going on too, right? So,

Lauren 31:26
small world, all these little, small connections, so that's was has been really, really helpful, too. So, like, we really took all of these little pieces of information that people were throwing at us and embraced it and tried to figure out what was going to work for us and our family, and how to filter out bad information and do what we knew we needed to do for him, even just like getting more CGM right, like using the resources we knew, like I had a doctor tell me, Hey, I'm going to write you a prescription for a CGM, if you're willing to pay cash for it, take it to Costco, if you have a membership, and it will be pretty affordable so you have a backup supply, because Dexcom can take a long time to send you your replacement. You want a backup supply. And so these little things have been so helpful to take some of the stress away, because I learned really fast, how stressful it is to not have a CGM if you didn't have a little backup supply, because it wasn't last in the 10 days, until we figured out how to make it last 10 days. And so we emerged ourselves in in that, in the podcast.

Scott Benner 32:34
And where does that get you to a year later?

Lauren 32:37
Oh yeah. So it's been wonderful. I mean, it's been awful. At the same time, the podcast has made me feel less alone in this journey, because it's a very isolating experience once you actually get home and realize what is going on and eating the same things and being comfortable changing things. And as much as I love our Endo, and I think he's great. I will also say the educator that was down there at that first appointment after we met with him was a type one diabetic herself, and she was this young, cute girl, and my son's blood sugar is sitting at like, 150 which I'm like, thinking is pretty good at this moment for where we've been, like, been in the car for two and a half hours or four or five days into this, he's at a 150 and me, you know, it's been two hours since he ate, and she's like, why are you letting him sit at 150 you can give him a correction right now. And that was the best thing she ever said to me, yeah? Because even though he was in range, like, she's like, you can do better than that, yeah. And let's keep going. Don't be afraid of it. Don't be you're not gonna stack the insulin. I'm like, okay, great. So these little moments give you this courage to do better and set the higher bar, a little bit higher. That's like, like I said, what the podcast has done. I think my husband's biggest takeaway is, like, we have to steal the A, 1c, overnight. And that's one of the best things. Like, I think that we've tried to do, and have done as well.

Scott Benner 34:02
That's interesting, that that helped him, huh? That

Lauren 34:04
was something that stood out and, you know, in his mind. And like I said, it makes sense, is like, if we can have a good, you know? And this started to happen, yeah, kind of right away, really, we wanted to have a good overnight. And that moment time we're on Lantus and humolog, and within, I'd say five weeks we're on a pump we got on Omnipod really fast in those moments, though. He's like, we it will help with some of these variables during the day. You know, the what we're dealing with during the day at school, because we're still trying to navigate school time, but like nighttime, like we we're here, we can take care of that. And if we can make that strong and tight and that a flat line, like we will win. Isn't

Scott Benner 34:45
it interesting, Lauren, that like you took that thing from the podcast that occurred to me years ago, and you've turned it into way more than I did, like because when I had that thought, I was just in a battle with a number, with the A, 1c, and. I couldn't get it to move. That's when it hit me. I was like, Oh, she's not eating overnight. Maybe I could find some stability there. And, you know, like, steal some a 1c out of this number, you know what I mean. But I wasn't thinking about it as deeply as you thought about it. That's pretty cool at the time that it translated.

Lauren 35:17
That's something that I will live and die by that that's so important if we can always keep good control overnight, which does require sacrifice sometimes, like that means if I don't have to get to sleep because I'm constantly doing some corrections or pulling back basal, like is basal right, or doing anything because we are in manual mode on our Omnipod, and that is a result of Jenny telling us to use Omnipod in manual mode, and as the one of the other best things that we ever did is do it that way, because we have much better control,

Scott Benner 35:49
and you have the time to put to am I right to say that you're you stop working your stay at home. Now, I

Lauren 35:54
did stop working. Yes, I did. I did stop which that was a really big struggle for me, and I think that the first few months of dealing with his diabetes diagnosis, I don't even know that I I took the FMLA for a while, and, you know, was able to focus on on him and learning it. And I knew that if I went back to work, which I tried, I did try to go back like it would be harder to care for him to the way I wanted to, and I know that's not possible for everyone to do. It was possible for me. And so I and I worked because I loved to work. I loved my job. And so it was so hard for me to walk away from that. And I was also afraid, like, how am I walking away for a company that that spends makes the medicine that saves my kids life. How am I? How am I doing that?

Scott Benner 36:43
Yeah, and you give up a big piece of who you are when you stop working as well. Yes.

Lauren 36:47
And I was so worried I was gonna, like, lose my connections in the diabetes world and like, would not become familiar with, like, what's coming next, and what would be best, and all of these things that I was gonna lose my knowledge on. And I said, there's just nothing more important than making sure he stays healthy and doesn't have these long term complications. So it's he's more important than this job, and so I've got to make that sacrifice,

Scott Benner 37:10
because you're around all the time and, you know, and you you stop working, so you took the pump out of automation to get like lower targets, and you're basically acting like the algorithm. Now. You're making adjustments, bumping and nudging stuff like that.

Lauren 37:26
And so the way Jenny kind of described it to us was it's important to understand what the pump will do and when it's doing it before you allow it to do it. So it's kind of like a marriage where you're kind of like sitting down and understanding all the little details before you actually get married and commit to the algorithm. In a sense, because you want to know how to do the an extended Bolus, you want to know how to do a temp basal increase or a decrease. And like, kind of learn those things before you give over to automated mode. And I will say our trainer was not happy that we were doing it that way, and had the nerve to tell us we won't ever get the control we want in manual mode. Oh, and then once you tell us that, now we're definitely going to do it and show you.

Scott Benner 38:15
Do you think at some point you'll move into automation? Our

Lauren 38:18
newest step that we're actually trying to go before is we're gonna get ready to loop, which I'm having a hard time doing, and, like, for some reason, okay, like, letting go of that control. But Jenny has now suggested that we loop, and we have actually, like, built our loop system, and I'm just kind of nervous for it, but I will say, because my son so we went from a 10.3 a 1c at diagnosis, to a 5.8 which was our first follow up appointment, to a 4.9 and then back up to a 4.2 Wow. Excuse me, not, 4.2 5.2 excuse me, gosh, that would have been terrible. I was like, Oh my gosh, really, no, that's like, nuts.

Scott Benner 39:00
Then, yeah. What makes you nervous about about looping

Lauren 39:03
the change now? So now, when you've been successful doing it the way you're doing it, it becomes nerve wracking to give up some of that control they walked us through building everything. And I think what kind of intimidated me at that is like I did what you told me to do with building this app. But I don't know what I did or why I did it.

Scott Benner 39:24
You don't know what the company did when they made made it right. It just shows up and you use it. I

Lauren 39:30
don't know why I'm scared. I'm I don't know. But because I don't, you have dash pods. You do right? Yes, you have them. Haven't started them yet.

Scott Benner 39:38
So if you tried loop, you could just, like, swap, right? If it panicked you you could just take the pot off the new bottle and go right back again. Yeah, I know

Lauren 39:45
I was hopeful to, you know, I listened to your podcasts with the fox and the loophouse, yeah. And that helped, that helped after we built it like, kind of understand things in a little different way. Yeah. I mean, we need to, we're like, sitting there just waiting to do it. We actually, you know, it's like, you kind of want him at home for a few days, so he's obviously in first grade, and, like, just to kind of control and get comfortable with it. And so you're not, like, relying on the school, which has been wonderful, like, hey, fix this or do this.

Scott Benner 40:17
And, yeah, I mean, a long weekend, didn't we just go past Columbus Day, what happened? You had your

Lauren 40:22
shot. So we have fall break coming up. And so I was thinking, We should do it then, yeah, we'll have a Thursday, Friday, Saturday, Sunday. Well, listen,

Scott Benner 40:30
if you're going to do it, do it then, because then your next opportunity is going to be Christmas, and then you're gonna think, well, I don't want to do it during Christmas, and then you're never going to get it done then. So, yeah, fall

Lauren 40:39
breaks it. Okay, I need it. Let's like, I need people to tell me what to do. And Jenny's so sweet, like, she does it in her own way. And I sometimes, like, wish she had a little bit more, like, Lauren just do this. It's okay, a little more of me. Yes, I need you. And my husband needs Jenny. So it's kind of funny, like, I need you to just like, slap me in the face and say, This is what. How you do it?

Scott Benner 40:59
Hey, question you have. You have two boys, right? The younger one is he more like you than your husband? Is the older one more like your husband than you like?

Lauren 41:07
No, my older one's more like me, for sure. Okay, yeah, and my younger one is no, you know I I don't know that I would ever be as brave as he is and like he's just been so wonderful through this experience. It almost like makes me so frustrated and feel bad for him, really, yeah, like, because I just think I would never have been this way, or I would feel sorry for myself or and he just doesn't, you know, and he's asked questions, why do I have this? And that's, that's, you know, the worst, like, how do you answer this in a way that makes sense to A then six year old. For how many more years am I going to have diabetes? And those things are hard. And he's like, Okay, you tell him, though. And he just, he processes it and doesn't cry, doesn't have a moment, you know what? He has me. I like, oh, I don't want to change my pump today. I hate pump changes. Like, he'll say that, which I'm like, you know, you just go with it and but you do get those hard questions. And I don't know that I would have been as, like, mentally strong as he has been. Yeah,

Scott Benner 42:07
Arden was up last night. She's got midterms right now, and she was up till she's been up all week, studying, like, late at night, and then getting up going to class. And, you know, blah, blah, I got a text from her last night at 1:55am Are you awake? And I said, Why? Because, by the way, I was not awake. And she goes, my pod just stopped working, and I just put my laptop down to go to sleep. I could punch the wall. She said, right. God bless her. I said, Hold on one second. So I ran downstairs, got a pod, filled it up, brought it upstairs, handed it to her, she was swapped the pod and was back to sleep, you know, in literally, like three minutes. But I said to her, as she was putting it down, like, as she put it on, I said, I look for suggested insulin and put any in right now, especially with the new pump, and your blood sugar started to trend up over the last couple of hours. I don't know if she was snacking while she was while she was studying, or if maybe the pod was like, going sideways, you know the I'm not sure, yeah, and she put in a little bit, and I walked out, and I was like, I don't feel like that was enough. I've been really tired lately. But by the way, because Apple messed up and my podcast hasn't been publishing on its own, I've had to get up in the middle of the night all week to publish the podcast manually. It's fine, but, but I've been a little behind on sleep. I guess is my point. I went to bed early last night, and then I got woken up at two o'clock. But still, when I left the room, I thought, well, let me sit up for a little bit. I want to see which way this trends. I don't want her to have to stay up. She's got to be up at eight to go to class, to take this this French midterm, right? I stayed up for like, another hour, and I'm glad I did, because I, you know, after about 45 minutes, I said, You know what, this isn't enough insulin. She was like 150 when she changed the pod, she drifted towards 170 I went in and I made a Bolus. I waited 20 minutes to see if it started moving in the right direction. It did, and then I went to sleep. So, yeah, I mean, it takes, it takes some effort sometimes, and it's frustrating. You know,

Lauren 44:06
the best thing that we can do, though, is what I try to remind myself is like, it's, I'm tired, but it's okay, it's, it's so worth it, and it's a privilege to be able to take care of them. I try to convince myself, obviously, I wish they didn't have to do any of this. And I try to tell my son too, and I love that you're still helping her and doing next I'm like, if you ever get one day, you're going to take care of this by yourself. And if there's ever a time that you're kind of tired of it or you don't want to do something, like, you can always call me and I'll always be there to help you. Yeah. Like, even if you don't want to do your pod, change, like, I'll do it for you. Like, so you don't have to think about it. Or if you want to be me to Bolus you for the day or count your carbs like I will always be there.

Scott Benner 44:43
I don't want her to be 170 overnight while the new site is settling in, because also, right, you know, also little things. Her basal rates lower overnight. Her correction factor is a little weaker overnight. And it's a new site, you know, if the old site was going bad, and that's what the drift up is. About, or there's food in there, and that's what the drift up is about. Then the algorithm is not going to, not really going to think about that. It's only really going to look at the number. And then you've got the new site. That's not going to work as well, because it's brand new. And then what, she sits 170 all night long, then she gets up in the morning at 170 and yeah, and the adrenaline hits her, and now she's 200 and now she's in class, and she's trying to take a test with the 200 blood sugar that's maybe going to come down while she's in there, and then she has to feel the fall and the whole thing, like, it was just, I thought easier for me to stay up for an hour and make sure that that didn't happen. Yeah,

Lauren 45:32
100% and I agree. And those are the things that you have taught me that I'm so grateful for. And, yeah, I can't, like, even crush and catch like, yeah, crush it and catch it. And you know, like, if there's a time where I've ever felt like, Okay, this pump site, is there something wrong with this pump site, I kind of put a I'm comfortable. Maybe that's a bad thing, but I'm comfortable putting in, like, what I feel like is a kind of an aggressive amount of insulin to see if it works, and be pre prepared to catch it.

Scott Benner 46:00
Yeah, it feels like you're figuring it out. To be perfectly honest, it's safe and yeah, and you're still very new at it. And you're doing obviously, excuse me, you're obviously doing really well.

Lauren 46:09
Well, thank you. Well, it's all courtesy of you, and knowing that this matters, and you know, and it's like trying one thing at a time. Like, you can't try it all at once. I don't, I don't believe. I think you have to get really comfortable, really fat, like, with certain things, and get really good at one thing, and then, okay, let's tackle the next thing that we can improve. And we were always pretty good about Pre-Bolus thing, because I did understand the importance of that with my background, with my job. So like, seems like it can be scary too, because what if he doesn't want to eat what you Bolus him for, but I've been so lucky that he'll eat everything. And, you know, I found like, Oh, if he doesn't want to eat, you know, something like, you add a little bit of something else that calculates to run the same amount of carbs, he'll he'll never say no to some ice cream. He'll never say no to something to give him a little bit more carbs. That's a treat, if you will.

Scott Benner 47:04
I'll say this, you're focused on what you're doing. You're paying attention. Things are making sense to you. Really. You're at the point now where you need to not overwhelm yourself and burn out and continue to have experiences that you learn from and build on your portfolio of knowledge. Correct.

Lauren 47:21
And then there's definitely ways we can improve, for sure, and we're not all the way there. So it's a constant process and a battle that you always have to fight. And well,

Scott Benner 47:32
yeah, I hope you stop seeing it as a battle at some point. And I mean, yeah, in the first year I get it, it is a battle at some point, it should feel more of like a marriage of, you know, you know, that's not, not always easy, or something like that, like, you know, like, yeah, something you're happier to be involved with that you know, can be difficult at times out of the blue, sometimes, you know, you're not stunned by when it, when it goes sideways, and you're not sitting there thinking, like, oh, I can't believe I have to do this. It's almost like a thing you're happy to be involved in. Happy is the wrong word, but like, you know what I mean? Like, you're okay being involved to take care of them and help, and it's like a bigger thing, you know, it's bigger than the moment usually, yeah, I think that happened for you. I think you're

Lauren 48:17
like, I'm in a like, it's like an extreme sport to some extent, you know, and that you have to, you know, have a different level of endurance. So and you have to train your body, just like an athlete has to train their body to be prepared for this new level of what you are required to think about and do on a day to day basis that you've never had to do before. And that's what I'm like. I have to train my body to get comfortable and a stronger endurance for

Scott Benner 48:46
a lot of this. Just don't forget

Lauren 48:48
to sleep. No, that's why, I think that's why Jenny wants us to loop because she wants us to sleep too. And I funny. I think it's funny, not funny, but interesting. Like when we go back down to our endos appointment, he's always like, I feel like he's more worried about us than our son. He calls us that tells us we're sugar surfing. Or I feel like we bump and nudge, which is probably the same thing

Scott Benner 49:08
during the day, if you're on top of it, and you don't mind being on top of it, I didn't find it to be taxing during the day. It's at night when you have to do it. It's like, it's a little more like, you know, like

Lauren 49:19
the sleep Yeah, it wears on you. It can be very, very tiring, you know. And I think you also taught us to, like, lower your alarms, to go off sooner, because if you can treat something sooner, you need less insulin. And so it's just listening to all these things and applying them that is so important. And I'm so grateful for, well,

Scott Benner 49:40
I appreciate it even the way, like the bold beginnings or the pro tips or whatever are structured. It's kind of a bigger idea, meaning, like, I want you as the listener to be captured by the idea that this is possible. And then I want to give you bare bones ideas that hopefully. Lead you to thinking like, oh, wow, this is possible. I'm doing it. It sounds like you're there, right? But at the same time, if the next episode of That was like, hey, now listen, you know, 130 overnights okay if you need to sleep or something like, I think it sends a missed a mixed message then. But I do think that if you know you need to sleep one night and the blood sugar is 130 I don't think you should sit up all night trying to make it 85 like. I do believe that it's also a thing that I do. But in my mind, you can't mix that into the instruction manual, the initial instruction manual. It can't be like, You don't mean it can't be like, Hey, this is very important. You absolutely have to do this, unless it's Friday at 3pm and then don't worry about it, because I think that's what gives people the permission to ignore things, you know what I mean? Like, I want you to get to the point where once you know how it really works, then you can adapt it to your life. Like, right? Like, I don't expect you to do it exactly like that. I've heard people say, like, you know, I What's he think I'm going to follow these exact rules? And I'm like, No, I'm like, this is just the stuff I noticed. Like, do what you want with it. Like, I don't care. I'm

Lauren 51:01
so grateful you just said that, and I heard you say that right now. And because it's good to hear that, that it's okay to have one night at a 130 so that you can recharge and get a good night's sleep, and you get back on that horse tomorrow. And obviously, I totally understand what you're saying, but it's really good to hear you say that, because you have been so successful, I know that if I do that one night, or if I can't stay awake, or it does drift up past that, it will still be okay, and we can still be successful, because it's really easy to get hung up on feeling bad if you have a bad day or something goes wrong, and being able to bounce back from that, but also not get complacent, like, I'm also can't be okay with, you know, 130 or overnight for forever?

Scott Benner 51:49
Yeah, no. But frankly, yeah, 131 50, 202, like, none of that, you know, I don't know what the analogy here is. I didn't know this was all going to get this big when I made that stuff. I I also didn't have all the information in my head now then that I have now I didn't have, you know, back when the pro tips were made, as an example, I hadn't been a person who ran a Facebook group with 75,000 people in it. I wasn't that pre I didn't get to see people's reactions and 19 different perspectives. I had my perspective and the ones that I could imagine, but not everybody else is now I I'm a little closer to having maybe a complete portfolio of perspectives, but I'm still paying attention to other people, because there are times people say something that I thought, Oh, I wouldn't have thought of that, you know, and then I look around and I think, I'm they're not the only one that thinks that way. I'll have to adapt myself to understand that this is also, you know, a concern or a way of thinking. And even if I had all that information on day one, there's no way I could have gotten it all into that. I put that series together in a way that it should leave you honestly. It should leave you right where you are. If you're focused and you understand it, and you put in some effort. You should have an A, 1c, and the low sixes, high fives, depending on how you eat. To me, that's what happens when you understand that Pro Tip series. You know, you understand what I'm saying. Am I making sense?

Lauren 53:12
Yes. And I, like I said, it's people like me who are new into this. Need to hear this, because the doctors just want you under seven. And I like, that's not good enough, and I kind of resent that that's the goal, and I understand that it's hard, and I understand but like, they can do better for everyone, especially like the children. I feel like we can do better, and with the technology and all that stuff, we can do better, and you're the reason that we do better not because of what our endo team? Yeah, no, I appreciate that taught us or helped us

Scott Benner 53:44
with. I'll defend them and try to alleviate your anger a little bit too. Like they don't know you. They don't know everybody. They've got a system. You know, here's the stuff I do. This is what it's done for me. I've seen enough people mimic it that and it worked out for them the same way that I'm pretty comfortable saying, like, you should give it a listen and see if it makes sense to you. They can't do that. Right? They can't give you. I

Lauren 54:07
wish that they I wish that they wanted people to have better than a seven, a, 1c, like, I wish that the standards on what they were focusing on war was tighter control. And I know we're like, just shifting to time and range, but, like, I don't necessarily love that either, unless we're going to tighten that range, because you can hang out at 170 all day.

Scott Benner 54:27
Is that's awful. I think the time and range, the way it's set up right now. What is it, 70 to 180 is that how they talk about it? Yes, yes, that's based on, I'm guessing, what the establishment believes is possible, and what they've seen from people, and what leaves you under a 780, 1c et cetera. They're shooting for commonly accepted ideas and and they're trying to make space for, I would imagine, the fact that everybody's not the same. Everybody doesn't understand it the same. They don't have the same amount of effort. They don't have the same access

Lauren 54:59
to right. And I know that, and I understand that component of it, or like, knowledge or willingness to, I mean, everyone

Scott Benner 55:06
medications, you know, like all that. Yes, hey, with your last couple of minutes here you're obviously, you're involved in pharma. You said, like, you know, the people who make the insulin, so, like, I'm guessing somewhere between where you live and how you're talking, you worked for Lily or novo, you don't have to say that's sort of my expectation there. And then you talked about like, glps, yeah, tell me what you saw. Tell me what you saw while you were at work that made you think about them. Oh my

Lauren 55:34
gosh. They are miracle drugs. I was so excited too. So I was actually at Santa Fe. I did start my diabetes career at Santa Fe, so I was Atlantis and a PJ girl. And then I did. I started at Lily that before not in diabetes. Went to Santa Fe's to get involved into the diabetes marketplace, because that's where I thought it was best for my job. And then came back to Lily because I knew what they were going to be launching, and I wanted I realized, like, hey, the GLP ones are great, wonderful medications. Like, I want to be a part of this and learn about them. And they are miracle drugs. They do wonderful, wonderful things for people. And, like I said, I kind of was, like, angry. I don't even know if I could do my job anymore, because, like, I'm jealous at the sense that, like, it's not indicated for my child, and what they can do for someone, and I get frustrated to think, and I know they are, I think they are starting to do studies around in type one diabetics for these medications, but they can really change The outlook and the forecast of someone who has diabetes, and it's, they're like, I said, they're really, really life changing, and their future is bright for the type two diabetes market place, with what's going to be capable for people. And it's with, I think it's also like, you don't have to do it the hard way, like using insulin is difficult, right? And you do have these risks of hypoglycemia if you're using it, if you're you know dosing properly, if you will. And I think people are really under utilizing insulin and dose don't dose it have proper ratios to prevent the hypoglycemic episodes. But that's here or there. But what the GLP ones can do for you, I mean, and what I've seen people transform, it's it. They're wonderful. And I know you've had wonderful experiences with them, too. And what they can do with insulin sensitivity is amazing, yeah, and I've loved listening to the episodes where

Scott Benner 57:35
you talk about them. Well, I'm glad. I appreciate you sharing your perspective on it. Yeah, I'll tell you that. Gosh, I feel like I've said this already, but my wife came home from work 10 years ago and longer now, honestly, and she works in the safety side of things and and so, and she said, Hey, there's a drug one day, people are just going to take it and lose weight. And I was like, really? She goes, yeah. She's like, it's like an injectable. And she's like, you're just gonna lose weight. And that's all she really knew about it. And I said, what, you know? Why are you telling me about this? She said, I just saw a lot of the data come back from studies and everything. And she's like, it's a type two medication, but it's gonna be a weight loss drug. I think,

Lauren 58:14
yep, she was right.

Scott Benner 58:16
Yeah, she just said that, and then never said it again. You know, like it was just the thing she said one time. And then all, you know, lo and behold, a few years ago, people started, it was out there before people knew. And then it kind of caught trend, and a couple of famous people lost some weight. I think that put, like a focus on people and

Lauren 58:34
and then there's a shortage, and it's stressful, and, oh my gosh, all

Scott Benner 58:38
that stuff you expect to happen happens like, they're not going to make a ton of it if before they know if they're going to sell it and like that kind of stuff. And then that all happens like that. And there's, you know, every one of the arguments that you can, kind of like, foresee easily that are going to come. But then one day, you know, I went to the doctor and just said, like, you know, I'm not okay. Like, I need help. And the doctor was like, Oh, I'll put you on a GLP medication. And I was like, Okay. And then, you know, I said to my wife, this is what's happening. Maybe you should do it too. And now today, I think together, Kelly and I have lost 200 pounds. Isn't

Lauren 59:13
that amazing? Yeah. I mean, I don't know. I know you say you did, but like, Did you realize that that was even something you could have done? Like, did you think that between the two of you, you could even lose that much weight? No,

Scott Benner 59:24
no, no, no, no. That's not an expectation, like

Lauren 59:28
life changing medicine that I mean, which, and I know they're studying it in more places, but it's the benefits it can have and that it does have, and the stories I've heard from people who have been on these it it's just, it's really unbelievable, and I hope the doctors hear them, and I encourage people to tell the doctors their experience, not just about their weight, but other things that are happening that have improved their life, because I believe it extends beyond just the weight loss. Obviously people feel better when they're, you know, to a whole different level once with with that, I think mentally, socially, all, all of those things they need to know. And I also think that if you are diabetic, or you've had even pre diabetic numbers like it can help lower. I mean, not people who go from being like high a 1c, is type two diabetic to normal blood sugars. With this, with just having this medication on board, is also really, really phenomenal and not discussed enough. And I think that doctors can have better standards for their patients by using these medicines. And even, you know, we don't, we're not just shooting for the seven. Let's shoot for a below a six, because it's possible.

Scott Benner 1:00:42
Because why not? There's studies going on in all kinds of different disease states and how GOP ones might help them. Yes, you know, a lot of that comes from community people too, which is nice. It's a group of people saying, like, hey, you know, I went on this for weight, and look what else happened. And then, you know, and then they're online, and somebody goes, Yo. That happened to me too. I thought that I've watched those conversations happen, like, Oh, I thought I was imagining that. And then next thing, you know, there's 1000 people in there saying it, and you're like, oh, that maybe is part of and then now they go study it and try to figure it out. It's gonna be awesome. Like, I, you know, happy to tell people all the time, like, I'm not anemic anymore, since I went on a GOP medication.

Lauren 1:01:20
Yeah. Do you think it will what dose Are you on now? Of the Manjaro I

Scott Benner 1:01:24
use? Well, yes, that bound. But Manjaro I use 12. I use 12.5 but I'm not really trying to lose weight anymore. So Right? Wondering if I, I don't know if I should go back a little bit, or if I should mess around and try to see if there's a lower amount that would do the same thing. What does your doctor want you to do? You know she and I actually haven't talked about it in a little while. I'm due, I'm due to go back in and chat with her again about it, but that's going to be something that I bring up next time I am really, like, very stable right now at a certain weight, I have one more thing I'm going to work out about my health, and then I think I'm going to be in a good spot, and then I want to really sit back and assess it and then make a decision about, like, you know, if, if I should be searching for a number, an amount that could be lower. I don't know. Do

Lauren 1:02:12
you worry that you it might stop working?

Scott Benner 1:02:15
Oh, I mean, I don't worry about it, because I'm not, I'm not a an anxious person. But if that happened, I would run my head right through a wall. Yeah. So, because I had to stop it for a week for a surgery, I really focused on not changing my eating at all. I really, was really as careful as I could be, and I still, I gained six pounds that week, yeah, yeah. And I was like, that's, this is insane. So, right, yeah. Also, it can. It can, once you've lost the weight, to, not gonna lie to you, like, it can be a crutch sometimes, like, there are times where you're like, Oh, I could have a piece of cake right now, because the medicine will take care of it, and it kind of does. It slows your digestion down, like, keeps your insulin levels better, like, and

Lauren 1:03:01
you notice that, do you ever wear a CGM while? I know you've talked about wearing CGM before, but it's curious, if you ever wore a CGM while, honest? GLP, yeah, notice a difference from your original I did. It's like,

Scott Benner 1:03:14
you're not it's like the joke. It's like the CGM is not working. It's just repeating the same line over and over again. You

Lauren 1:03:19
know, see, oh my gosh. And I wish doctors would also put more people on the CGM when they prescribe these to really see what it's doing, because it's they don't, I don't know that they do that. And that would tell a whole different story too, and give up different real, a big, different perspective. I

Scott Benner 1:03:38
think being studied, how amazing it is eczema. PCOS, anxiety, fatty liver, yeah, heart disease. I said to my brother the other day, I'm like, I'm gonna live forever on this GOP, I

Lauren 1:03:51
mean, right, and, but there's more. There's gonna be new things coming. So be excited about the new thing and see if you're gonna switch and paying attention, right? I know you need everyone should be. It's, it's exciting. Like I said, I hope that with this, like, we get more comfortable and using them in type ones

Scott Benner 1:04:07
too. Somebody said to me recently, like, do you think you're gonna have to take that forever? And I said, probably. And they're like, oh, and they got all like that. And the person who said it to me is not like the picture of health. And I thought, well, I'll be bright and chipper at your funeral. Don't make fun of me. You should be looking into it for yourself, don't, you know, right?

Lauren 1:04:26
And it's, I'm out of cholesterol medicine, not because I, you know, I don't have a weight issue. I it's, it's hereditary. I've, you know, heart disease runs in my family. I had slightly elevated cholesterol. I started a medication way before the average female that takes starts one, and if I stop that medication, it's a crime. It's a lifelong thing for me too, like just a pill. I mean, it's so, so easy, but if I stopped in my it doesn't matter what I eat my blood, my cholesterol levels will become elevated again. So it's lifelong for me, and no one's judging me that I'm taking. Taking that for the rest of my life,

Scott Benner 1:05:01
I take the job of an actuary very, very serious. And like those tables are incredibly accurate. And if you don't know what I'm talking about, like there are there's research, there's tables that actuaries used to, you know, pinpoint how and when you're going to die. And trust me, you fall into a bucket that they can pretty accurately figure out I was not going to get for whatever reason. God bless my body. I was not going to get type two diabetes, right? So I'm overweight, and my endo keeps telling me, she's like, You are so like, I'm looking at your a 1c she's like, I really don't think you'll ever get type two she's like, it just feels like your body's not that's not going to be its failing point. So with that in mind, I was going to have a heart attack one day. Like, one day, maybe it would have been when I was 70. I have absolutely no idea, right? Like, but if you think you're going to be the one overweight person who lives till they're 100 that's I heard somebody say the other day, like, you see a lot of fat old people, do you? And I was like, No, I guess not. I'm not in as good of health as I could possibly be in. I think I'm not the picture of health, but I'm in as bad as good of health as this body is going to handle. Right? This gives me the best possibility I have of making it as far as I can, as well as I can, for as long as I can. That's the way I see that like it's, it's and listen, if you wake up tomorrow and turn the podcast on and it's the editor, and he goes, Hey everybody, I'm so sorry to tell you, Scott's dead. I have 35 episodes of the show left. I'll put them up for you, and then that'll be the end of it. Like you say, okay, it didn't work out. But if I look up when I'm 80 and my joints feel better and My back feels better, and my heart's working better, and I don't have clogged arteries, and I don't have type two diabetes and all this other stuff like you think it's gonna matter to me that I had to do an injection once a week. You kidding?

Lauren 1:06:50
Exactly now it's it's amazing, and we should be all lucky that it's available to us now, and God bless the researchers and the scientists who develop these things, because it it will change a lot for a lot of

Scott Benner 1:07:03
people, celebrate smart people, like they're out there doing that stuff right and, by the way, if you can live till 80 doing a sit up and eat in a certain way, and your body's, like, jives with that, like, right on. Like, I'm not telling you to use a ninja, I'm telling you where I was that wasn't happening for me. Yeah. And it's

Lauren 1:07:20
important to be proactive with that, that sort of oh yeah stuff. You can't be reactive. I mean, you've got to be proactive with your health. I

Scott Benner 1:07:27
wish it existed sooner. I would have done it sooner if I knew about it, so I know, yeah. Anyway, you all can do whatever you want. It's been

Lauren 1:07:35
successful, and it hopefully still will be. And like I said, keep the advancements coming, and it's positive for all of those struggling with these things, because it's real. I had to

Scott Benner 1:07:45
go to a doctor's appointment the other day at a new doctor I'd never been to before, and the girl at the front desk hand me back my driver's license, and we chatted a little more, and she's like, Oh, I'm glad you added that. I forget what I said. I added some context to something. And she's like, I'm glad you said that, because I actually was sitting here thinking that maybe you had stolen this driver's license. Oh my goodness, yeah, she thought I was like, maybe committing fraud. Because she's like, I didn't think that that was you in the driver's license. Well, that's, I mean, somehow sad and lovely at the same time?

Lauren 1:08:21
Well, yes, especially since driver's license photos are so not good

Scott Benner 1:08:25
anyways. But it's only four years old, and she's like, this, isn't you, is it? And I was like, No, it was. It's not now, I guess so. Yeah, right on. I'm in and if I I'll say the thing I haven't said in a long time. If I grow a tail from it, I'll just write that bound on the tail. I'll be like, That's okay,

Lauren 1:08:44
exactly, exactly. And you know what? They've been studied long time there. There's been other medicines out there before, the ozempic and the Manjaro, the Zepp bound, wegovy, the there's been other ones before that. They weren't

Scott Benner 1:08:58
as longer than you think you will, yeah, yes.

Lauren 1:09:01
So these medicines, this class of medication, has been studied for a long time, you know, over 20 years.

Scott Benner 1:09:09
You know what I mean, right? Yeah, I didn't hear you talking about it then.

Lauren 1:09:12
So, oh well, yeah. So, I mean, they're, they're there, and there's the safety is there. So it's like, stop hating on it from the people who are like, Oh, what's gonna happen in 20 years? I

Scott Benner 1:09:25
don't know, but I do know what was gonna happen. And so I do think that sometimes we make our judgments the wrong way. And you see, like, I saw a news story this morning, like, 104 year old ladies still work six days a week, blah, blah, blah. Like everyone thinks that's who they're going to be. That's a random thing. And you ever notice when you talk to those people too? They're like, I cake every day and I've been smoking since I was 12. These people weren't dying no matter what exactly they won, some sort of a genetic lottery. We all didn't win that lottery,

Lauren 1:09:57
so, right? And we're not invincible. Oh, there's a handful that are, yeah,

Scott Benner 1:10:01
there's Yeah. There's a random few people who just, who knows for what reason they're just gonna go forever, no matter what they do to themselves. But instead, people take away from it. Oh, look, that lady is 104 and she smokes cigarettes and works every day and blah, blah, so I'll be fine. Yeah, no, that's not how I what you want to believe? Yeah, I ain't going out like that. What do you think? Right?

Lauren 1:10:25
Yep, and I admire it. And like I said, I'm so grateful for you and what you've done and sharing your experiences, it makes a big, big difference. And so keep doing it, please.

Scott Benner 1:10:37
I appreciate it. I am going to go have lunch now and then, Arden and I are going out because I'm doing a little speaking thing next week, and I need a since we're talking about it, I'll tell you, I need a pair of pants in a smaller size. We're going out to get

Lauren 1:10:51
some. That's the best feeling. That's what people we joke you like people you need. They will save money on food, but they will also need to have spend more money on some new clothes, most likely, if they commit to this

Scott Benner 1:11:02
medicine. It was so drastic that we, my wife and I both made a conscious effort. We only bought enough. We started buying clothing, thinking about it in like, six to eight week terms, so we'd only buy a couple of I were the same thing, yeah, because then and then we would just, we took them off and then put them in a bag and then we donated them to a shelter. Yep, we just kept doing that for two years.

Lauren 1:11:27
Yeah, that's where the expense comes at, is needing the new clothes for sure.

Speaker 1 1:11:32
Lot of donated clothes in the last two years have left the house. So anyway, I would, I would like that money back. I'll contact Lily and see if there's a program for the for the southbound that I get. Give them the idea, give them the idea. I should listen. I get some clothing money out of it anyway. Thank you very much. I really appreciate it. Thank you.

Scott Benner 1:11:59
Today's episode of The Juicebox podcast is sponsored by the Dexcom g7 and the Dexcom g7 warms up in just 30 minutes. Check it out now at dexcom.com/juicebox this episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube free automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox at my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox Did you know that skin grip has donated over $100,000 in scholarships to help people with diabetes? The people at skin grip, they know what it's like to live with type one diabetes. They know what it's like when your devices fall off at the absolute worst time. And they're here to help skin grip.com/juicebox save 20% off your first order when you use my link. That's what you get for being a Juicebox podcast listener. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card if your loved one is newly diabetes? Diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one our series cuts through the medical jargon and deliver straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juicebox podcast, the bold beginning series and all of the collections in the Juicebox podcast are available in your audio app and at Juicebox podcast.com in the menu, the episode you just heard was professionally edited by wrong way recording, wrong way recording.com,

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#1686 Different Isn’t Less Than

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

Jessica shares her journey raising a young child with Down syndrome, autism, and type 1 diabetes—covering diagnosis, daily care, therapy, community, and resilience in a candid, powerful conversation.

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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
Friends, we're all back together for the next episode of The Juicebox podcast. Welcome.

Jessica 0:14
My name is Jessica, and I have a four year old daughter named Kay who has type one diabetes.

Scott Benner 0:20
If this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management, go to Juicebox podcast.com. Up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. If you're looking for community around type one diabetes, check out the Juicebox podcast. Private Facebook group Juicebox podcast, type one diabetes. But everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast. Type one diabetes on Facebook. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. This episode is sponsored by the tandem Moby system, which is powered by tandems, newest algorithm control iq plus technology. Tandem Moby has a predictive algorithm that helps prevent highs and lows, and is now available for ages two and up. Learn more and get started today at tandem diabetes.com/juicebox the episode you're listening to is sponsored by us Med, US med.com/juicebox or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med, the show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year, and is the most accurate CGM in the low range that you can get ever since cgm.com/juicebox

Jessica 2:23
My name is Jessica, and I have a four year old daughter named Kay who has type one diabetes. Kay

Scott Benner 2:30
and Jessica, okay, Jessica, you have any other kids?

Jessica 2:34
No, she's my only one. Okay. Are you planning on having more? Maybe depends on what the future holds. I wouldn't mind another kid, but I'm also content with having just k were you planning on this one? Yes, I was. I've always wanted to be a mom, so I was definitely planning on this

Scott Benner 2:49
one. Awesome, awesome, very cool. So she's four now. How old was she when she was diagnosed?

Jessica 2:54
She was three, so actually just June of last year, July, August,

Scott Benner 2:59
September, October. Wow. 16 months, yeah, yep, gosh, other autoimmune in your life, anything else in your family, line or father, or anything like that,

Jessica 3:09
we have type one diabetes in the family. Kay's dad's mom is a type one diabetic. And on my dad's side, I have two uncles and two cousins with type one diabetes.

Scott Benner 3:22
Kay's dad's mom,

Jessica 3:26
yes, meaning that her grandma, yeah.

Scott Benner 3:29
So what you're telling me is that one day I'll be dead, right? But like, there could be some, somebody could be like, Oh, my mom's father had, oh no, or even go further than that, it'll be, it'll be like, Oh, my mom's mom had type one, and they'll be talking about art in one day, right? Yep. And that's like one two. That's like two more baby makings away to get to that situation exactly. Okay, wow. That'll be a long time for me. I will definitely be, you know what? I might make it forever though, Jessica, don't you think you might never know if the universe is going to pass it on to somebody? I say, why not? Me? Right? Where would you be with living forever? Jessica? Are you a yay or nay on that? Right out of the box? I

Jessica 4:13
probably say, I don't know. That's a hard one. I always think about that, like vampires, you know, things like that, like eternal life, I don't know. I feel like I might get bored, but maybe not. It does sound kind of exciting.

Scott Benner 4:26
I'm in for the risk. Sounds better than the ultimate right? Yeah, yes. So I'd rather be bored, I guess, than nothing true. Yeah, no, yeah, I agree. Yeah. I could get a lot of places. I could maybe finally get good at that Madden game. I'm terrible at it, right? Haven't played, haven't played in a long time, but I if I had a couple dozen years to figure it out, I think I could really dig into it. How do you see Kay's diagnosis coming? Is it all at once? Is it a slow burn? What gets you there?

Jessica 4:53
Honestly, it was all at once. She wasn't she isn't potty trained yet. She also has Down syndrome, so we are still working. On potty training. And with that, I had noticed that she started wedding through her pull ups within like 30 minutes, just soaking up to, like her knees, like her kneecaps, and like mid stomach, just soaked, which isn't like her usually, you know, she's pretty good about telling me when she has to go. So that kind of threw me off, and she was very irritable, just not herself. Just seemed kind of off, not like too lethargic, but just different than how she normally acts. Okay, and she had recently had an ear infection, so she had been on antibiotics for that. I had also started to notice a rash in her diaper area, but knew it was different than a typical diaper rash. I had called her pediatrician and told them, and they're like, Okay, well, let's just bring her in make sure the ear infection is gone. Kind of take it from there. So I bring her in and they check her ear infections gone, but she has a yeast infection, which they said can happen when she's on antibiotics. And so they're like, you know, that's fine. They kind of were ready to just kind of move along, and they were going to give us some cream, but I told them that she was also wetting her pull ups, and just like, soaking the bed overnight, and just even within like 30 minutes, I did tell them that there is type one in my family. And I asked them if they had any sort of test in office where we could just see, you know, I was like, I don't know for sure, of course, but do you have something? And they said, Yes. So they took a urine sample, and they were like, Yeah, you got to go to the hospital right now.

Scott Benner 6:31
Wow, geez, yeah. How soon do you know in a pregnancy about the Down Syndrome? Is it like, during, like, while you're pregnant, is it at the birth like, how does that work?

Jessica 6:42
Yeah. So I actually found out when I was pregnant with her, I went to the anatomy scan. I believe I was about maybe 1819, weeks along. And during the anatomy scan, they checked, like, the long bones and, you know, all the whole anatomy. So as they were kind of scanning, the ultrasound tech was just doing her job, scanning over things. And she got to Kay's neck and kind of just kept scanning over that, remeasuring and just scanning again, remeasuring. And she told me, okay, hold on, like, let me get the doctor in here. He comes in, does the same thing. I'm like, laying there. You know, it's been a few minutes, they're looking and looking and looking. And he looks at me and he says, you know that we believe that your baby has Down syndrome, and what happens with that is the skin of the neck is sometimes thicker, and that's one of the signs that they look for, really, as well as, like, your long bones being a bit shorter. So with those two things, he believes that my unborn child has Down syndrome. Are you by yourself during that test? Yes, yeah, it was during covid. So I was by myself. Oh, gosh.

Scott Benner 7:55
And then are there? I mean, so I have so many questions, I guess, how do you feel psychologically in that moment? I was scared.

Jessica 8:06
I was definitely scared, just because there's a lot of unknowns. You know, it wasn't necessarily the fact that my child may have Down syndrome, it was just, you know, I'm sure there was other health complications that could come along with that. And I always wanted to be a mom, so I just wanted my child to be healthy and, you know, just safe.

Scott Benner 8:27
What does the OB offer you then at that point? Like, is it maintenance about your expectations and getting ready for what it means? I mean, I don't, I really don't know another way to ask this. I know that you're farther along. Do they do they offer to terminate the pregnancy? Like, what's the whole conversation like? Yes.

Jessica 8:45
So the basically, the next step was that he told me, I should get a amnio. And basically it's where they stick this, like fine needle into my stomach and take some amniotic fluid, and then that will tell them, you know, a higher chance of if my baby has Down syndrome or not, and then they kind of go over next steps. Along with that, there's a risk of miscarriage, because you're sticking something foreign inside your body, and it could, you know, try to reject it, which in turn, would reject the pregnancy. But he was very adamant. Told me that there's one doctor in town that's really great about doing these, and I need to go over there right away. He had made an appointment. A lot of people don't do this because of the risk, but I was, I wasn't sure, you know, I was just throwing all this information. And so I did it. I went over there, I did the procedure. And, you know, luckily, there was no complications from that. And it was about maybe two weeks later, I had got a call from the office, and the woman had said, you know, so sorry your daughter, you know. Or she said, I'm so sorry, your baby has Down syndrome. And then she said, You want to know the gender? And I said, Yes, and she said, it's a pre. Girl, and then she said that we have to ask. But you know, there are options if you would like to terminate.

Scott Benner 10:05
So then there's my question, like, why get the test if you're not considering that, right? So was that in your mind?

Jessica 10:11
Right? No, no. Honestly, I think really what I wanted to do as far as, like, getting the test was just so I could be more knowledgeable, and I would know what's coming. I'm big on, you know, support groups, like when she was diagnosed with type one. I joined, you know, bunch of support groups and the Juicebox podcast group just so I can get more knowledge. And I did the same thing when they told me about her down syndrome diagnosis.

Scott Benner 10:38
Okay, so you didn't say to yourself, well, let me get this test, because maybe I'll, I'll terminate if it's so you were just doing it because you were a little maybe flustered, and they were directing you towards doing the

Jessica 10:49
test, right, right? Yeah. It was just very like, let's go. Let's go right now. You know, urgency, hurry up, type of deal. Yeah, you're single. Mom. Are you married? I am not married. I do have a boyfriend. Katie's Dad and I aren't together. We split when she was about three months old,

Scott Benner 11:04
but at the time you're of your pregnancy, that wasn't the case. So do you go to him? Does he get a vote in all this? How does that

Jessica 11:10
work? Yeah, he does. He actually wasn't concerned at all about her having Down syndrome. We were both, you know, very okay with her being born with Down syndrome. I was just, you know, worried, of course, as I think most moms are, would I be capable of giving her what she needs? But I at no point thought that I, you know, didn't want to have

Scott Benner 11:31
her. Okay, well, it's an interesting, forward and backward looking question. What does that mean, giving or what? What is the need, and are you able to give it to her now that it's, it's a reality,

Jessica 11:41
yeah, so, you know, I just knew that with her having Down syndrome, she could have a lot of complications right now. I mean, she's still in physical therapy at four years old. She's in occupational therapy, speech therapy. I knew, you know, in a way, that those things were a possibility. There was a lot of unknowns, so I just wanted to make sure that I could just give her every opportunity to succeed. And like everybody else,

Scott Benner 12:11
when you start digesting the information around all this and you're understanding what things might be like, or what the needs are going to be, did it make you consider the termination or no? No, no, okay, you have four years of hindsight now, yes, such a ridiculous question, because I'm asking you if you would throw your kid out a window, and you obviously wouldn't, if you could take yourself out of your situation, and, let's say, put you over the mom who's getting similar news, but now you're you're there to help her through it. Would you tell her terminate? Or would you tell her, no, don't

Jessica 12:50
I would tell her no. I mean, ultimately, I am always going to be pro choice, so I would just give them the knowledge that I have and what's helped me, because every child, you know, Down syndrome or not, is different with, you know, being possibly being born with health complications. Okay, so I would look at it like telling her all the knowledge that I have, all the resources that I found the community. And then, you know, go from there,

Scott Benner 13:15
from there. Is it as difficult as I'm imagining, or is it not as difficult as I'm imagining to raise her,

Jessica 13:21
it can be only because she she's talking more at four. Sometimes it's still hard to understand her. She does get frustrated with things easily. It's still hard for her to learn and grasp things. A lot of times it feels more like she's maybe two than four, because I still can't, like, leave her alone for one second without her grabbing something or, you know, running away, especially in public. I have to have a tight grip on her, otherwise she runs off. She doesn't understand, like, stand right here for one second, you know. So that can be a little hard.

Scott Benner 13:56
Yeah, I feel like I'm asking you a ton of difficult questions. And we just, we just started talking. I'm okay. All right, thank you. Yeah, you're good. Did that have an impact on your relationship, like did that boy? Could he not handle it or or what happened does, I guess, does that have anything to do with the disillusion of that relationship? When you think of a CGM and all the good that it brings in your life, is the first thing you think about I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox podcast is sponsored by the ever since 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The ever since 365 is the only one year CGM designed to minimize the vice frustration. It has exceptional accuracy for one year with almost. False alarms from compression lows while you're sleeping, you can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at ever since cgm.com/juicebox one year, one CGM. This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pumping algorithm, the tandem mobi system with control iq plus technology features auto Bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox, this is going to help you to get started with tandems, smallest pump yet that's powered by its best algorithm ever control iq plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead, and It adjusts insulin accordingly. You can wear the tandem Moby in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately, clip it discreetly to your clothing or slip it into your pocket head. Now to my link, tandem diabetes.com/juicebox, to check out your benefits and get started

Jessica 16:19
today. No, I don't think so. Honestly, he was truly very open and accepting of her being born with Down syndrome, so that really had nothing to do with our relationship ending. Okay,

Scott Benner 16:29
okay, I guess is a forward looking what are your expectations like? What are your goals like? You know, you talk. I just got it's so by the way, my life is strange because I just got done recording with somebody. It was such a silly, giddy conversation, and then I didn't read the notes about yours, then you jumped on. I was like, oh, that's sobered me up pretty quick. Was like, okay, but I found myself talking with her about her concerns about what's coming, about diabetes. So I mean, splitting these two things apart for a second. Yeah, what are your long term goals and concerns around the Down Syndrome?

Jessica 17:07
My long term concerns, I just want her to be at least semi independent, like I'm not unrealistic with the fact that she'll probably live with me forever, which is fine. I just want to teach her what I can to be, you know, semi independent, to where if I need to just run to the gas station or run to the store for a couple items, you know, when she gets older, she's okay to, you know, get a snack or make an easy lunch or, you know, something like that. And I want her to still be involved within the community and have friends and, you know, do other activities.

Scott Benner 17:47
Okay? So you just want her to have as normal life as possible with an expectation that maybe five or six minutes you could, you could stop for for a little bit. Yeah, correct. Correct. Yes. You ever notice in public when you see adults with Down syndrome, and they're with their parents that their parents look like they're 1000 years old and would have died years ago if they could have but they just don't feel like they can.

Jessica 18:08
Yes, yeah, I do, yeah. No, it's not, you know, that's that is. I think a lot of parents concerns. To be honest, I see a lot of posts about wondering how their child is going to be as an adult when they're gone, you know, like, who's going to take care of them? Are they going to be able to even live in, like, a, like an assisted living home, or, like a, like a group home where there's, you know, like the little apartments in a community, like, Can they do that? And would they make it without me? It's, it's a huge concern, right?

Scott Benner 18:38
I've brought this up a couple of times in the podcast over the years, because it really is, I'm not joking. I really get that feeling like, I don't honestly know if that's what's happening, but yeah, do you see those parents and you're like, oh my god, like their son is 40. You know that lady's 85 she shouldn't be at the mall. And yet, there she is. And it almost like it gives you that feeling from a third party perspective, of like she knows she can't stop and right? And it almost feels like it keeps her alive, like it's a very I don't know, like maybe I'm wrong, or maybe it's just me being weird or pushing my thoughts on the situation. But really has struck me that way a number of times my life. Yeah. And do you have that feeling of like, wow, I have to take good care of myself? Does that all strike you?

Jessica 19:19
It does, yeah, especially because I don't have, you know, any other kids at the moment, I'm not sure if I will so, you know, in hindsight, I don't know if there will be anyone else to help take care of her when I'm gone. So absolutely, it is, you know, important that I try to, you know, be there for her as long as I can.

Scott Benner 19:38
If you had another baby, and you know, it didn't have any issues at all, even just just having a baby with, you know, no extra stuff. Would that tax your day in a way that would be difficult looking

Jessica 19:51
at it right now, possibly, of course, I would figure it out. You know, as people do, they would just make it work. You know, when you really want another child, you just kind of figure it out. Out, and it gets added to, you know, your daily routine, yeah, currently, right now, yes, it would, just because she has therapy two or three times a week and, you know, just other activities. I try to take her to doctor's appointments. And then, you know, you throw in management of type one diabetes. So then it's a lot. It can be, yeah,

Scott Benner 20:18
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Jessica 21:47
Yeah, actually, so my boyfriend who I'm with now, he actually has a sister who's 21 that also has Down syndrome, so that worked out perfectly.

Scott Benner 21:56
Is that how you found each other? Yes,

Jessica 21:59
yeah. Actually, I met him through our local GGS Playhouse, which is a Down Syndrome Achievement Center. So I met him through that, and it's been great. It's super helpful that he and his family understand Down syndrome. And you know, there's no,

Scott Benner 22:13
yeah, you almost have a relationship. That's also a community, right?

Speaker 1 22:18
Exactly, right. Oh, isn't that interesting? And then

Scott Benner 22:21
it worked out you actually liked each other romantically too, right? Exactly. Yep, good dumb luck. Also, I would imagine probably, probably would have given you a little extra time. I would have been like, look, I don't feel great about it right now, but I'm going to hang a little longer and see what happens. Because you're pretty good match. Can you join forces or the age difference of your kids. Is it too different?

Jessica 22:44
It can be too different. As far as that, Kay loves, you know, hanging with his sister. And they get along, you know, great. And you know, she'll play dolls with her and entertain her in ways, you know, where Kay just has so much fun, yeah, certain activities, you know, I mean, his sister doesn't maybe want to go to, like, a lot of littles play groups and stuff, but we make it work.

Scott Benner 23:06
His sister, it's not his daughter or something like that, too, right? Right? Exactly. She's not his daughter, right? Okay, all right. I feel like I have a pretty firm grasp of this. So you're making your way through this life, and then the diabetes comes. Now there. Tell me the first time you break down and and run into the garage and start talking to yourself.

Jessica 23:26
I mean, to be honest, I think honestly, in the hospital, I just we know the first time I was able to kind of come home and nap, I think it was like the second day my parents came up there, and my dad's like, you're too tired to even drive home. He's like, I'll drive you home. You can take a shower, you know, have a take a nap and rest, and then I'll pick you up in a couple hours. And I think it was just then that I just, you know, had my, my breakdown. It was a lot, you know, and I'm just thinking about the future. And, you know, my concern, of course, is, is she going to be able to self manage even a little bit, you know, as she gets older,

Scott Benner 24:02
she's too young for you even to have an answer to that question yet, right, right? Yeah. So it just hangs over your head and you just get to wonder about it, awesome, right? Yeah, just awesome. Thanks, everybody. Yeah, going great. It's going great, wow. So realizing you can't even get home from the hospital to shower yourself, you're like, oh, how is any of this gonna go your dad seems like he's paying attention. Sees what's going on. Are they still involved? Like, does this become a kind of a takes a village, kind of a situation?

Jessica 24:30
Yes, yeah, actually, and thankfully, we do live with my parents, so they help me out a lot. You know, I've taught them enough, at least enough about diabetes, to where, you know, I can go out with friends or go to dinner or what have, you take a break, and then they're able to manage it just fine. That's lovely. How old are you? Did I ask? No, I am 3333

Scott Benner 24:50
Okay, so this happened in your late 20s. Gotcha, do you think you'd live with your parents if Kay didn't have Down syndrome?

Jessica 24:57
Honestly, probably not. Not just because right now, with all her needs, it's been hard for me to kind of work full time, so I'm thankful that they've allowed me and Kay to stay here. And, you know, I can work part time and, you know, take care of the things that I need to while also taking k to her therapies and appointments. But I do believe if she did not have Down syndrome, I probably would not be living with them. No,

Scott Benner 25:22
okay, are you angry about that? Long? Did you have feelings about it?

Jessica 25:26
I do wish that there wasn't, maybe so many complications as far as, like, you know, with now, what's the type one diabetes? And then, you know, her having Down syndrome. And you know, I could stop all the therapies, but I wanted to keep those going at least until she went into kindergarten next year, to give her the best opportunity, you know, that I can. So part of me, you know, I do look at my friends who, you know, have typical children, and, you know, wonder, but I do love Kay, and honestly, I mean, I wouldn't change anything, despite all the struggles. Yeah, I

Scott Benner 26:01
don't mean to say that you would. I'm just trying to, I'm just trying to, yeah, figure out. I mean, I'm trying to pick through your life in an hour. You know what? I mean? Like, yes, I know it's a little ham fisted sometimes, but yeah, you got to get to it a little bit. Will she go to like, a regular public school?

Jessica 26:15
Yes, yeah. She's actually currently in pre school at our public school, and so she's doing that in a general education classroom currently. So she loves going to school, and that's still the plan. I'm not you know a parent that will try to force the school to keep her in general education if it doesn't fit her needs, if she's struggling and maybe needs that more, smaller, like environment to learn. But for now, it's working out really well. Okay, great.

Scott Benner 26:42
I wanted to know if her speech is on schedule for somebody in her situation, or if it's behind,

Jessica 26:48
I'd see for someone in case situation, it's about on schedule. She's doing pretty well.

Scott Benner 26:54
Awesome. And then so your expectation is that at some point you guys will be able to communicate pretty well? Yes, exactly. Awesome. Well, that's really cool. All right, why did you want to come on the podcast?

Jessica 27:06
I enjoy listening to all the episodes and everyone's story, and I don't know. I just wanted to, you know, be able to have a chance to tell my story and talk. And I just thought it was really fun and exciting moment to share my life. Well, I

Scott Benner 27:18
appreciate that. Awesome. Thank you. Well, I've asked as many questions that have popped into my head. But what should we know about Kay, about living in the situation you're in? What do you imagine people don't understand?

Jessica 27:30
Hmm, you know that, honestly, Kay can live a typical life like you and I, it just may take a little longer for her to reach, you know, certain goals or milestones, she does have to work harder for certain things. She didn't start walking until maybe a week or two before her second birthday. So that took her a little bit longer. She's recently, within the last year, learned how to jump, which is really excited about. You know, it's just the lower muscle tone takes her a lot longer with talking and running and jumping and everything. You don't think about how much our muscles impact our daily life, especially with eating too, you know. So I just want people to know that, you know, she's still capable of doing everything that she wants. It just may take her a little bit longer.

Scott Benner 28:22
Okay, what's the physical therapy like? Is it literally like physical therapy, occupational therapy, or is, or is it? Do they give you home things to do, like, How involved are you in it?

Jessica 28:33
When she was younger, I was back in the same room. I was watching what they were doing. But as she got older, I was more of a distraction, so I'm able to kind of just sit in the waiting room and wait for her. But what they are working on is walking on like a balance beam for balancing and walking upstairs, climbing ladders, jumping over things, anything that could help her, you know, in her typical life of, you know, just even playing on the playground at school, safely, anything like that. Feel

Scott Benner 29:03
like we all know, you know, you say Down syndrome. I think I feel like we have, like, an image in our head of what that means, right, right? If you had to explain it to somebody who had no concept of it at all, like, would you go back to, there's chromosomes and, you know, would you start there? Or, like, how would you explain it to a person who's listening right now and goes, I really don't know what that is,

Jessica 29:24
yeah, so I would probably honestly go from the beginning. You know, actually this month is Down Syndrome Awareness month in October. So every day I've been sharing a little fact about Down syndrome, or, like, Miss for people. So I love doing that and advocating, and it's just a lot of fun for me. So typically, if someone's like, you know, I've never encountered anyone with Down syndrome. I don't even know, you know how it occurs. I would just honestly start from the beginning. You know, it's down syndrome. You have a third copy of the 21st chromosome, and you know, that's how it's created. You. You know, they all have similar features, but studies have actually shown they do still look like their family as well.

Scott Benner 30:07
Is it in your family at all anywhere? Have you traced it back? Has anybody else had a baby with Down? No, no, no. Is it something that has to do with the mix of you and that boy that that's not around anymore, or is it? Is it not about that?

Jessica 30:22
Yeah, actually. So there's three types of Down syndrome, and the most common is Trisomy 21 which is basically the medical term for Down syndrome. And then there's also translocation, that one is genetic, so that one typically can be traced back to genetics. And that's actually the type that Kay has, and she inherited it from me.

Scott Benner 30:44
Oh, so that's the thing that you had, but it wasn't, how did they, I don't know the word. It's not a dog,

Jessica 30:50
yes, yeah. So basically, when she was born, they tested her blood again, just so they could tell me what type of Down syndrome she had. And then when they discovered it was translocation, they tested me and her father and I have what's called balanced robertsonian translocation. It's a lot, but basically, whatever you know, chromosome mishap I had, it didn't impact me physically or anything, but it made it like a higher chance to pass it on to my future child, which is what happened with

Scott Benner 31:27
Kay, yeah. And so you have no like, there's nothing about you, the way you look, the way you talk, the way you act, anything I would have no idea that you're carrying this right? No idea that's something. Yeah, I'm looking here at Trisomy 21 95% of cases, every cell has an extra 21st chromosome. Stop me if I'm wrong here, translocation, three to 4% a part of a chromosome. 21 attaches to another chromosome, and then there's mosaic. One to 2% only some cells have the extra chromosome, leading to milder effects.

Jessica 31:59
Yeah, yeah. Mosaic. You usually with mosaic, you can, you can't really tell it all, even physically. Actually, I read a story a couple of months ago about this woman around my age who had, I think, like two or three kids with Down syndrome, and they finally just did further genetic testing, and she had mosaic, and she had no idea. You know, it's no idea, so it's crazy.

Scott Benner 32:21
Oh, that's interesting. Yeah, I see what you're saying. She probably said, I'll have one more. This won't happen again, right? Right, exactly. Yeah, she was a Down Syndrome factory, and didn't know it. Yes, yeah, yeah. About that? What about some of the health concerns that can come along with them? Hearing, vision, yeah, heart defects, like that kind of stuff. Is that worth worrying about? Or how do you track it? How do you stay ahead of you mean, because, I mean, I got leukemia on this list as well, and a number of other things.

Jessica 32:47
Yep, yeah, all of that. And that was my concern, too. Like when I was pregnant with her, as I mentioned, I joined all the support groups. I joined a pregnancy group, and that was hard, because there's also a higher risk of stillbirth. And so then, you know, sometimes that parent would post that they lost their child even before they were born. And you know, that's always like, sitting there, like, Oh, please. You know that? I you know, it's horrific, you know, and you just don't want that to happen. And there's so many, you know, health issues, like heart issues, that Kay had a smaller hole in her heart. I forgot the technical term, but luckily, that closed on its own, so she didn't need any intervention with that. She does have hearing loss in her right ear and but so far, no vision.

Scott Benner 33:31
Oh, that's great. I mean, you know, anything, anything that's positive, is positive. I think, right, exactly. Yeah, weird question. It was a comedian named Shane Gillis, yes, yeah. And he does a bit about, is it his nephew or his cousin, his uncle? His uncle has has Down syndrome, right? Yeah, yeah. So, you know, I don't know one person personally who has Down syndrome, and I find his bit amusing, right? Yeah, right. Not only that, but I actually think he's doing a pretty good service by he says to people all the time, like, my uncle's the happiest person I know, right? That guy is always happy, I think, is how he puts it right when you hear that. I'm so interested, because I'm going to expand this in a second. But like, insulting, upsetting, amusing, normalizing. How does it strike you with him?

Jessica 34:23
I think you know he did go on to positively say that, you know his his uncle's happy. I can't remember the full bit, but I know he said something in there that like upset the community, including myself. And I'm trying to remember what it was, right, right, yeah. And I'm trying to think of, what about that? Because whatever it was, I do remember, I watched the skit and, like, the even the crowd was, like, quiet for like a second, and then he was like, Oh no, he's great, you know, he's the happiest person I know. You know, kind of like rebuttal, you know? And I can't, I can't remember what interesting,

Scott Benner 34:57
because it was upsetting, but it didn't stick. Yeah. Okay, right? Yeah, it's,

Jessica 35:01
it's hard because, like, I try not to, like, let all that sit, you know, in my mind, but I know in the moment, you know, there was a lot of comments about about what he had said.

Scott Benner 35:13
I mean, he did it on, I'm sure in his stand up, like, whatever you're in a club, you expect it, but he did it on Saturday Night Live, right? He did, yeah, I guarantee it was shocking, because nobody expected him to talk about it. Him to talk about it. Think maybe the funniest part of it is he's like, he always has a cheese sandwich with him or something like that. Or like, yeah, yeah. Not why I bring it up. Why I bring it up is because I hear people have these reactions to when somebody makes some dumb joke about about diabetes, and usually they don't say type one, right? They make and I see the reactions from like, oh, you know, that was funny to listen. It wasn't funny, but I don't have a problem with it, to this is upsetting, or it feels like an attack, like it's a spectrum of reactions people have. And, I mean, this is just a specific one that I guess looking for how, like, if you How hard is it to see the humor in something that is like so, I mean, obviously impactful on your life and on your daughter's life as well. Like, I'm trying to see everybody's perspective. I'm actually asking you this to try to figure out the perspective of the other people with the type one thing, I guess, is where I'm digging.

Jessica 36:16
Yeah, I think, honestly, it depends on what they say and how they say it, because, you know, we know comedians are going to joke, like special needs, unfortunately, you know, has always been a joke. And you know, like you said, Now, I've also realized type one, you know, has been jokes, and comedians line up and stuff too. So, but, yeah, I think, to be honest, it really just depends on how they say it and like, what they say, right? You know, because, like, his whole bit of like, oh yeah, he's the happiest person I know. Like, yeah. I mean, that is the whole you know, statement and joke kind of as well. Overall is that, you know, people with Down syndrome are always happy, and that was actually something I posted about this month. Like, you know, they have emotions, just like you and I, and I can tell you, Kay is not always happy, but, you know, I feel like they do see the world differently than us, and they don't notice all the horrific things. You know, they can happen, or that does happen. I think that does help, though, in turn. So I think that's kind of where that line that they're always happy comes into play.

Scott Benner 37:15
That's great that you said that. So the idea is like, I don't care how, how it appears to you from the outside, like she is a person and she's having a full range of issues and emotions too. Yes, yeah, oh, I'm glad you shared that. It's awesome. But the other side of it is, is it at no point is this, you know, is Gillis, like, uncle, worried about, like, global politics or something like

Jessica 37:39
that, right? Yeah, exactly, exactly. Yeah, yeah. That's the beauty of it. You know, they don't, you know, you worry about that.

Scott Benner 37:45
I don't know. I don't care about what the data centers are going to do the electrical grid. Be honest with you, don't even know what you're talking about. Like, I'm not gonna lie to you, like you're in a tough spot, like there's nothing you don't know. But, like, I do, yes, very aware. I'd like to acknowledge it, I guess is what I'm saying. And you seem very upbeat around the whole thing and and that's why I asked you the other question. I want to see what you I just wanted to see what you would say. How do you stay upbeat like that? Is it? Is it a struggle too? Or is it not?

Jessica 38:15
It can be, yeah, it definitely can be a struggle. There are probably more days where, you know, at the end of the day, I'm just mentally exhausted, you know. Kay, actually, about maybe a month ago, was also diagnosed with autism, so, and I've noticed, like, a lot of sensory issues, mood changes, you know. So that's been hard to navigate, because I, just as I mentioned in the beginning, I want her to have every opportunity and to try to, you know, best, learn to communicate with me and everybody else so I can give her what she needs and what will help her. So some days, mentally, yeah, by the end of the day, I'm just, I'm exhausted.

Scott Benner 38:51
We're holy. So is there autism in your family?

Jessica 38:54
No, not that, not that we're aware of, no. But when you also have Down syndrome, you can also easily get autism. It's a very common dual diagnosis. Oh, gosh,

Scott Benner 39:05
oh, geez. Did that add another layer, or did it just explain things?

Jessica 39:10
I think it just explained things for now, I'm not really doing anything extra at the moment as far as, like, regarding autism specifically, but it definitely helped explain things a little bit better. Examples of things like irritability, you know? I mean, she's also a toddler, so I do put that into play. And to be honest, a lot of times when you bring up extra concerns with mood, or even medically, a lot of doctors are like, Oh, well, she has Down syndrome. Like, that's to be expected. You know, that was also a concern of mine too, because I'm like, Okay, does she have autism? Does she have ADHD? She could have that too. Like, she's very particular. Like, if the door is open, she wants to shut it. She gets mad if it's, you know, not shut or the cabinet, you know, I think that's the biggest struggle. Is when you go to a medical professional for help, a lot of times they're like, Oh, well, it's just because she has. Down syndrome when you know that's not that's not always the case. You know there could be underlying problems, because she has Down syndrome, but it's not the answer to everything, and it doesn't mean that something else shouldn't be looked into.

Scott Benner 40:13
Yeah, I'm looking at it here, and I don't know that they completely understand the connection, but it does say, where is it at here? Roughly 15 to 20% of individuals with Down syndrome also meet the criteria for autism, which is higher than the general population, where autism affects about one in 36 children, or 2.8% Yeah, wow. I think this is the point when I ask if you're okay. Are you okay?

Jessica 40:39
Yeah, I'm okay. I'm okay. Can I send somebody to give you a hug?

Scott Benner 40:44
You know? Yeah, you know, that should be a service, by the way,

Jessica 40:47
should be, to be honest, you know, I've, I've, like, I've, I don't know, it's hard. I've looked into anxiety meds, you know, because, of course, adding on type one to all of this, now I just feel like, you know, there's definitely a percentage of us, I'm sure, that has developed anxiety through all this. For sure,

Scott Benner 41:05
let's go through all the stupid things. I'm about to say, hey, my chat GPT must be like, at the end of the day, must be like, This poor guy has so many problems, because I don't say I'm talking with somebody, and I need to ask a question, probably just like, I think he's got like, 1000 different things going on. Would it be crazy if we started an add on to DoorDash where the door Dasher gave you a hug at the end, like, an extra two bucks for a hug, like, you know, I mean, and you could decline it if you want to. Can you imagine the guy's like, hey, the person who sent you the food also got a call. You're like, No, thanks. Yes, right, right, not from you, but no, thank you. There's the boy that's, you know, like, you know, when, like, a service dog comes to a hospital. Can we start sending people to people's houses? If somebody wants to donate a large amount of money, I'll start that right now. I'll just send people out to people's houses with type one who asked for it, and they can just give them a hug. And you can, like, say whatever you want to them. And, like, they bring a punching bag if you want to hit it. You know, whole thing happens on your front step. It's really nice, yeah, oh my gosh. Have you considered therapy or, like, I mean, I mean, honestly, seriously, Jessica, you're young, yeah, I know, yeah, it's fun to Fun. Fun is the wrong word. It's interesting. It's interesting to sit here and philosophize about, like, living till you're 90 because you feel like you can't go anywhere. Blah, blah, blah, blah, but that's a lot of time between now and then

Jessica 42:29
it is, yeah, yeah. I mean, and I've, I've looked at therapy. I did actually do therapy when she was first born. She actually we had, she was stillborn, so I had a very traumatic birth where she was breech, and I had her at 36 weeks. I had no idea that I was in labor. I just thought it was Braxton Hicks. The basically the ambulance. We called the ambulance. They came to pick me up and take me to the hospital. And by the time they had got to the house, Kay's foot was already out. So the paramedic was just like, Hey, you want to do this. We can do this. Like, let's do this on the way to the hospital. And so I was like, Okay. Like, sure you You seem to know what you're doing. So I started to labor and have Kay in the ambulance, but when we got closer to the hospital, I stopped contracting and her head was stuck. So we, like, rushed into the hospital, and they put us in this tiny closet room, the first room they had available, all these doctors and nurses were surrounding us, and the I remember the doctor, he stuck his hands inside, he's like, flipped her and pulled her out, and she wasn't breathing, and so they had to resuscitate her, and they had to do it a few times before she was able to be brought back. So that alone. After all that, I was like, Yeah, I need to, yeah, that's enough. I need to talk to a therapist.

Scott Benner 43:49
Yeah, I'm good adult times over, yes, you just taught me something. I really want to pre tell you how much I appreciate that. I just assumed stillborn meant a death. But yeah, stillbirth is when baby is born with no signs of life, meaning no breathing or heartbeat or movement after 20 weeks of pregnancy. In most countries, they use 24 weeks. It's different from a miscarriage, when a baby dies before 20 weeks need a neonatal death is when the baby is born alive but passes away shortly after. So the medical definition of stillborn baby is one who has already passed away before or during delivery. But it doesn't necessarily mean they can't get you back from that. I didn't, it never occurred to me that's like a real miracle.

Jessica 44:27
Wow, it is, yeah. I mean, yeah, go ahead.

Scott Benner 44:30
Oh, I'm gonna give you the there's anything going right? Could you make a list? Yeah?

Jessica 44:37
Well, actually, yeah, Kate has a service dog as of like, two months ago for her to diabetic blur dog. So that's going great. So yeah,

Scott Benner 44:44
you know, I mean, once you said about the silver thing, I was like, actually, here's what I thought, Jessica. Let me be clear, in my brain, I went, Oh, really. I didn't say that out loud, but

Jessica 44:55
let me tell you, yeah, punch

Scott Benner 44:58
you in the face. Face, like,

Jessica 45:01
yeah, you know, anytime I tell people like the full thing and everything, they're just like, Oh my gosh. You know, it's crazy.

Scott Benner 45:11
Well, listen, people probably high five you for getting dressed. They're probably like, Look Jessica, she got dressed. She took a shower. She's doing great. Looks good today, this whole thing has lowered the bar for you extensively. You're succeeding no matter what, every day,

Jessica 45:27
right?

Scott Benner 45:28
Does it feel like you're having to set like, short term, accessible goals to keep yourself motivated or upbeat?

Jessica 45:36
Yes, I think that, that you know, definitely helps. Because I feel like if I look too far into like long term goals or the future is where I feel like I can get stuck. So I do look more towards like short term goals or fun things that are coming up, something to keep me positive about everything.

Scott Benner 45:55
Yeah, no, I bet you're super excited for that new Spider Man movie next year, right? Yeah. That little boy is marrying that girl from the dune movies. Isn't that nice? And they're going to be in a spider man again? Yep, I guess I'm joking, but I'm serious, like I as I'm listening to you, I keep thinking that there's very little value in you trying to prognosticate out 510, 20 years, like I would, I would do not that you're in like, survival mode. I don't think it's that. I mean, you really do have a good way about you talking about this, like, unless you're pretending I'm happy for you, and if you're pretending, I would understand that too. I really do think, like, you know, what can we get done this week? What would be happy, exciting, joyous for us this week. I think that's what I would do if I was you, I guess is what I'm saying, yeah, yeah. And

Jessica 46:46
that's, I mean, that's what I basically do. It works well, you know, like you said, you can't honestly look too far into the future and think about, you know, what ifs a lot of the Down Syndrome support groups, some parents are like, what's your child's adult life look like and, you know, will my child be able to do this? And a lot of them are like, you can't. You can't even think like that. You just have to live it day by day, because you don't know, you don't know what they're going to be able to do, or if they're going to live on their own, independently, or if they're going to live with you, if they're going to get married, you know, any of that stuff. So a lot of times it's like, just take it one day at a time, enjoy your baby, you know, live life.

Scott Benner 47:22
Yeah, no, I can't agree with that more. I don't think I mean, in a world where, like, a company has good news and their stock falls, I don't know how to guess what your daughter's life is going to be 20 years from now, right? Too many variables that are unknown to you. And if you're going to sit around and try to figure out what each one of them is, so that you can, like, put this together in some Machiavellian way. I think you're crazy way before she's 20 years older, right? Exactly. You'll make yourself nuts. I would think, I mean, just again, going off the conversation I just had. This mother is just worried about, like, How's her kid going to be with diabetes when he's 21 and maybe living on his own and and the human mind almost can't, like, wrap itself around all the possibilities there to come to an answer. And it's making her it's making her nervous. And yeah, no, you're doing the right thing. You smoke a lot of weed. No,

Jessica 48:12
actually, no, I don't, you know. Well, I try, I tried anxiety beds, but it made me sick. So to be honest, by the way,

Scott Benner 48:23
that's pretty par for your life. I would imagine you're like, oh, this medication will make me feel better. Nope, god damn it, yes.

Jessica 48:29
Literally, like I went to my doctor is like, Listen, you know, it's already, you know, she's already, like, take a half a pill. It can make you nauseous. I took a half of a half of a pill, and I still felt sick. And I'm like, please. Like, what else?

Scott Benner 48:44
Yeah, no. Also, I don't see how you can be high all the time and take care of your daughter. I think that would be insane. I'm also not impossible. I was joking, but no, I know. I said, you go out with your friends sometimes, right, right? But, like, do they have kids? Yeah.

Jessica 48:58
So, you know, some of my friends have kids, some some of them don't, you know. So sometimes we go out, we go out to dinner, go out for karaoke or something. But, you know, it is hard to, you know, go out, because I am, you know, the sole, you know, caretaker for Katie. My parents work, so I'm not gonna, you know, ask them, oh yeah, after you're done working all day, like, can you watch her all night? You know, so

Scott Benner 49:22
are you able to partake in those conversations, like, openly, or do they complain about, like, their kitchen paint being the wrong color? And you're like, oh, go yourself. Like, how does that like, Yeah, is that tough for you?

Jessica 49:33
I mean, I feel like I can openly talk about my struggles Now, whether or not somebody may fully understand it, you know, it's same thing. If you talk to somebody else who doesn't have a child, what type one, you know, you can explain it and but, and they may just be like, Wow, that sounds rough. Or, you know, how do you do it? But they don't, you know, fully understand, which is why I'm also glad I have a lot of moms within the Down Syndrome Community locally and not locally, that totally understand. You know, least the aspects of Down Syndrome and what that can entail. So that helps a lot, too.

Scott Benner 50:06
It seems really important, because at the very least, when you're when you're conversating with them, and they walk away, they don't turn their back on you and go, Oh my god, poor Jessica. Like, you know what I mean? Like, because your friends, your friends might be like, they might have so little context for what you're saying that you know, your situation probably sounds even more dire to them than it actually even is, you know. And so Exactly, yeah, and then you must not be unaware of that, right? Like in so you don't, and you don't want to be pitied, I would imagine,

Jessica 50:38
right, yeah, right, yeah. I mean, it's yeah, like you said, I don't want to be, you know, pitied. I mean, there's been times where me, or even, like my parents, have told me they've, you know, talked to friends or met someone out in public, and they're, you know, they're not shy, like, they're like, our granddaughter has Down syndrome, and they'll be like, Oh, I'm so sorry. And they're like, why? You know, we're not, like, it's fine, you know. So that's, I think that's just an automatic reaction to, what would

Scott Benner 51:01
you prefer in that situation? Like, instead of somebody offering their their I'm sorry. I mean, am I handling it better than that? Like, I try to just treat it like it's normal, like in like, everything's normal. But you used a word earlier where everyone else would have said normal. You said typical.

Jessica 51:18
Yes, yeah, we don't like the word normal because then it kind of like separates our children for like from the rest, which is what we don't want to do. Normal makes it seem like, you know, healthy. I said that too, and that's kind of like a fine line as well. It's so hard, because everything is about verbiage and how you say things. So you don't, you know, offend anyone. Or, you know, even, like, now, like the word disability, they're trying to, like, kind of move away from that and be, like, differently abled, you know. So it's just, there's a lot of verbiage changing, but yes, we definitely prefer typical. So, like, you know, your typical child versus, you know, this child is normal. You know what? I mean?

Scott Benner 52:01
Yeah, I just thought I was really struck. I didn't mention at the time, but I thought I loved the way you said typical there instead of normal. And I didn't even know why exactly, I'm starting to wrap my mind around it more and more as you're speaking. And I would even tell you that I'm sure there are people listening to this who have already shut it off because they think I'm being insensitive or like I'm joking through it, but I really believe this is how you would prefer to talk to somebody about

Jessica 52:23
this. Yes. Yeah, right, exactly. Yeah. Because, you know. And to answer your question of, like, what would I prefer someone to say when I tell someone that my child has Down syndrome, what do you say? You know, it's hard, like, I'm trying to put myself in their shoes. What do you say to that, other than, you know, so, sorry, like, okay, like,

Scott Benner 52:39
you know, well, it's a good point, right? Like, there's, what are the other responses? Like, you know, like, I say Mazel, tov. Like, it's not, like, you know, I'm like, congratulations, awesome. Like, none of these are reasonable responses, right? And I'm sorry it's not either. And like, so I think where my brain is is the reasonable response is to treat you like a person and go, Oh, what's that?

Jessica 53:02
Like, yes, yeah. Like, how old are they, you know, like, what's their name? You know, just yeah,

Scott Benner 53:08
they have a favorite movie. Like, yeah, move past it, or at least address it head on, right? And not walk around it and act all weird. And, you know, whatever else probably happened. I'm sure you've had some run ins with

Jessica 53:23
people, yeah, yeah, yeah, I've had that. And some of your podcast episodes, I've heard people struggles with, you know, educators for type one diabetes and medical professionals. And it's the same way with Down syndrome, you know. So, I mean, I've definitely had my fair share of encounters with that. Yeah,

Scott Benner 53:40
Has anyone told you that if someone was going to get down syndrome effect, I'm glad it was Kay, because you're strong person, you can take care of this. Has anybody hit that one yet?

Jessica 53:49
Yes, yeah. We always, like, there's even, like, just a running thing of, like, you know, you were meant to be a special needs mom, and it's like, no, you know, I didn't, because I had to, yeah? Like, you would too, you do the same thing. Like, there was no, it wasn't the chosen one, you know. Like, I just, it just happened.

Scott Benner 54:08
God knew Jessica, that you could handle it, so he gave you a daughter with Down syndrome. Well, awesome.

Jessica 54:14
Yeah, all the time, all the time. I'm like, no, no, I

Scott Benner 54:19
don't think that's right. Yeah, I don't think so. Martin tells me that that sentiment, she doesn't really get jazzed up about a lot about diabetes, but that sentiment she finds infuriating.

Jessica 54:30
Yes, yeah. It's like, you know, it's, it's tough because you're, it's like, they're saying I couldn't do what you do. And sometimes I do hear that too. It's like you could, and you would, you'd figure it out, you know, just like I did. Yeah?

Scott Benner 54:44
Because five minutes before this happened to me, I didn't think I could do it either. So exactly, by the way, I don't know if I'm doing it, but I'm staying alive, yeah, yeah, yeah. It's all language and people getting uncomfortable and then not knowing what to say next. And I think I'm gonna give myself a little. Credit here, which I didn't mean to do, but it's going to happen anyway. Again, the way I'm handling this conversation, I think most people find this uncomfortable. I think this is the right thing to

Jessica 55:08
do. No, I think so too, you know. And because sometimes you know, like I said, when you go into a conversation and you, you know, say that your child has Down syndrome, and, you know, all these other complications are like, wow. Like, they're either like, Wow, I'm so sorry, or just wow, and they're speechless and they don't know, you know, how to handle it. I'd rather be open and candid and have, like, a fun, you know, conversation in, you know, even joke about it, rather than it just be serious all the time.

Scott Benner 55:36
Don't treat me abnormally. Yes. Also, let me be clear, if I wasn't interviewing you for a podcast, I wouldn't have asked you if you consider terminating your pregnancy. It's not like I would do that, like, if we bump the dude show that the 711 I wouldn't be like, hey, that's interesting. Let me ask you a question. Hey, Kay, don't listen to this part, right? Right? Yeah, this is a very specific scenario, by the way, because I've asked people that in the past, and some people say, yeah, I really did consider it, and I think that's a brave thing to say out loud,

Jessica 56:03
yeah, I agree. Like I said, I'm, I'm totally pro choice, you know. And it is a very brave thing for people to be like, you know, I did consider it, like, Wait, all the options. And that was a consideration. And I know people who have, like, a birth diagnosis, I'm sure they get asked that too, like, oh, yeah, would you have terminated if you found out earlier? You know? I mean, it's, it's a question, you know, that gets asked. So let

Scott Benner 56:26
me ask you, I wondered this twice now, like, when you say I'm pro choice, you're saying it more like it's a moral or religious or some sort of, like, it's just how you like, you wouldn't have terminated any pregnancy for any reason. Is that? Right?

Jessica 56:37
Right, right, right, yeah, yeah. Unless they were like, oh, you know, it would, it would just vary. They'd have to be like, Okay, well, I don't think that this child would survive, like, an hour after birth. It would just be a very different circumstance for me. But it doesn't mean that, you know, I don't want everybody else to have the choice that you know. No, no, you know. Yeah,

Scott Benner 56:57
yeah. Just make an outlandish, like statement to see like they run that test, they're like, Hey, your baby's actually a tree. There's a squirrel living inside of it, its arms coming out of its foot. Would you like to terminate the pregnancy? What would you have said? Would you have said, no, okay, you don't have to answer. I just want to understand where you were coming from. Okay, yeah, yeah. You know, when Kelly got pregnant with Cole, we didn't do it on purpose. We were married for a number of years, but we didn't get pregnant on purpose. We didn't get pregnant on purpose. That's the most modern thing I'll ever say in my life. I didn't knock my wife up on purpose. That's what I should have said. And we got into this conversation pretty quickly, because I said, I gosh, I hope you know, I don't know we were talking about the health of the baby. It's what you do in the beginning, right? And I said, if there's something really wrong, you know, will you have an abortion? She's like, No, not at all. Like, my wife would never. And I was like, Oh, right. Oh, I never thought of this before, because I would, if you put it up to me, I'd do it like, you know, I mean, like, it's just worth talking about, because I think it's a hard thing. People don't discuss it. And this is a good opportunity to say out loud, like, I don't care what you how you feel about it, I don't care what you would do. I'm saying you should talk about it, because it's a thought everyone's got to go through who finds themselves in that situation, and it's a disservice to people when we don't talk about stuff, because then they feel alone, and they stay quiet and they don't talk to anybody, and then they don't have anybody to bounce stuff off of, and some of this difficult stuff needs to be hashed out. And without you getting mad at somebody, like, you know, I agree, yeah, absolutely, that's all. I'm not running around like, you know, you know, I wouldn't be like, Oh no, I heard the baby's gonna have brown hair. Let's get rid of it. Like, I'm not, like, I'm not saying that. I also want to say that, generally speaking, like, I don't, I'm not looking for babies to be aborted. You didn't mean, like, that's not a thing. Like, exactly, yeah, okay. I just want to make sure I understand this. Later, somebody will tell me I shouldn't talk about any of this. But I don't know what to tell you about that part. I had a person tell me yesterday I said something on an episode that I recorded yesterday that you guys probably just heard. And you know, the person was like, thanking me for talking about it, yeah, and, and I really, I really tried to hear what she was saying. Like, she's like, this is the thing, not nearly as important as this thing we're talking about right now. But like, this is a thing no one would say out loud. And she's like, you just, like, said that, admitted to it, then talked us through it. And she's like, I think that's really valuable for people. And I think this too, like, you know somebody, a lot of ladies listening to this, are going to get pregnant, and some of them are going to be in some cold, sterile room where somebody they don't know turns to them is the same. So sorry to tell you this, and then they're going to say something that nobody wants to hear and you should know that. Like, even if you think about it for five seconds, it doesn't make you a bad person. Like, you know you mean, like, I mean you're going through the checklist of trying to figure something out at that point. Yeah, exactly, yeah. Okay, good. Well, I'm making a lot of sense there. That's awesome. You are. Yes, I don't know why. I mean. I had some caffeine or something. I'm all life focused. We didn't talk about the service dog.

Jessica 1:00:04
Yeah, so honestly, through social media, I follow a lot of families with younger kiddos who have service dogs who are type one, and I just started looking into it. I did research on I looked up different, you know, service animal diabetic, their dog companies, and filled out applications and just kind of started the process. I wasn't even sure how long it was going to take, like, how funding would work, you know, because they're so expensive, so you got to think about all of that in a timeline. And I just thought it would help, because, you know, Kay can't tell me when she's feeling, you know, low, or if she's feeling sick from a high blood sugar, and she has a Dexcom g7 and she wears an Omnipod five. And those, you know, are definitely helpful. I know everybody's like, well, you have technology. Why do you need a service dog? And to be honest, I mean, we've had this dog for about two months, and she's alerted me, like, 30 minutes before a high or low, and is very persistent, yeah, so, I mean, it just helps me in that aspect, too, especially just because she can't tell me how she's feeling, and I don't know, like our previous conversation, I don't know when or if she will ever get to that point. So it's been really helpful. How did you end up paying for it? We started a GoFundMe, which I've never done before, and I was kind of, like, hesitant, you know, how some people feel about GoFundMe and all that. So we started that I posted on, like my facebook and shared it with my family and friends and, you know, just kind of put information out there, like, why a diabetic alert dog? And, you know, we have two other dogs. Why can't we train them? You know, just like questions I feel like people would ask, and so I would just post as much knowledge as I could. And actually, we got really lucky. One of the local news stations, the an anchor had commented on the GoFundMe and said, like, Hey, I'd love to talk to you about your story. And, you know, my mom and I looked, and I'm like, It's not legit, like, you know. So we, like, looked on Facebook, we looked on their website. They're like, yeah, she's real. She's real. Like, we're like, let's message her right now. Yeah, they actually did. We see three stories on us, and one of them, they have what's called the surprise squad. And so they come out and donate money to you. And so they donated, was five grand towards our GoFundMe as well. So yeah, I mean, just honestly, the exposure, and I think to having people see the stories, even in our own personal life, really was like a hold at your heartstrings kind of moment. So that helped out a lot. My dad's in the union. So his union actually created these little metal pins in the shape of like a dog that you can wear on, like your shirts and hats. And they sold a bunch of those and donated money to us through that. We did a few other fundraisers. So yeah, we were just doing whatever we could, but I think the exposure helped. Yes, you know,

Scott Benner 1:03:00
you just gave me an idea because, you know, the way the world works doesn't make any sense. I'm gonna start a GoFundMe for me for a yacht. And like, I was just thinking, like, you ever noticed no one does that? They don't say, by the way, they shouldn't. That's not my point. But like, nobody ever does anything outlandish and ridiculous, and it's like, I want to buy a Lamborghini. I have plenty of money. I can pay my bills, but I can't afford a lamb. Afford a Lamborghini. But if you all throw in $1 I'll be able to get one like I can't believe that the jackasses on the internet haven't done something like that yet. Maybe they have, and I don't know about it, yeah, we just haven't come across it. Yeah, no, I'm glad that worked out for you. That's really awesome. What kind of dog is it?

Jessica 1:03:38
She is a Great Pyrenees and standard poodle mix.

Scott Benner 1:03:42
Nice. Yeah, awesome. Hypoallergenic or no?

Jessica 1:03:46
Yes, she is, Yep, definitely. Yeah. Both our other dogs are poodle mixes, so no shedding here, which is good.

Scott Benner 1:03:51
Oh, very nice. Yeah. I just, I just brushed out that little dog we have the other day, and I was like, even the short haired dogs, you're like, well, where's all this coming from? You know, cool, cool. Anything we haven't talked about that we should have, anything I missed, or that you'd like to bring

Jessica 1:04:08
up, I don't, I don't think so. I mean, you know, just in general, like, I I've listened to a lot of the podcasts, and I know a lot of families don't find out about their kids type one until they're in, you know, DKA, and that's a lot of times, because the medical professionals, they don't test for that. You know, we've talked about that a lot, like, on all of your lot of your podcasts, you know, have talked about that. And, you know, I'm just super thankful that her pediatrician's office was like, Sure, we'll throw you a bone. We'll test it, you know, like, because otherwise, had I not asked they, they probably, you know, they wouldn't have there's no way, you know. So, I mean, when she was diagnosed, her a 1c was like 9.6 which, I mean, is high, but I just pretty early still, right? Yeah,

Scott Benner 1:04:51
yeah. I mean, I just with her situation, it's possible you would not have noticed if you didn't notice, and maybe something dire could happen.

Jessica 1:04:59
Yeah. Hmm, yeah, yeah, exactly, yeah. Because, again, I mean, she can't tell me if her stomach hurts or how she's fully feeling, so I was just kind of going off of her mood and other symptoms. And the, of course, you know, there was the excessive drinking as well. She's great about drinking water in general, but she was just demanding water like she had not had water for days. So that was, you know, with all of that, I mean, I'm lucky, because family history, even though I didn't grow up around them, and having a type one diabetic dog is different, but I owe it to him a little bit too. He has since passed, but he was a diabetic about the last year before he passed away. And I, you know, he always wore diapers because he peed a lot and drank a lot of water. And with those two things, I was like, you know, there's something going on.

Scott Benner 1:05:44
Well, that's an interesting way to come to the idea. I know. I know. Yeah, listen, I'm glad you should be impressed with yourself that you figured it out that quickly. Yeah, really, yes. The podcast. Do you think of it more as community management? You have you used it for a mix of things that, how does it, how does it work best for you?

Jessica 1:06:04
Yeah, I, you know, I've used it for a mix of things. To be honest, I do like it a lot for the community and hearing other people's stories, and knowing, you know that some of the feelings I have or some of the things that I go through, they also experience as well, you know? So I'd use it for both. Yeah, I like the specialty episodes about dosing for certain things, and then I just like hearing people's stories. Too

Scott Benner 1:06:27
cool. I'm glad. How'd you find it Facebook?

Jessica 1:06:30
I was searching on Facebook, and I'm trying to think of how exactly I came across it. I don't know if I was in like, another smaller group, and then somebody had posted about it, which is probably most likely what happened. But then I came across the Juicebox podcast Facebook group, and I started listening to the podcast. And, you know, I mean, that's been an extreme help, you know, mentally and just dosing for certain things as well. Just, you know, plethora of knowledge for sure.

Scott Benner 1:07:00
I'm glad to know that. I'm happy it helped you. And thank you to all the people who run around sharing it all over the place too.

Jessica 1:07:06
That's Yes, I always see it shared, and I do the same thing. Anybody's like, hey, my child was newly diagnosed. Here's the link. Check this out.

Scott Benner 1:07:13
Like I got tagged in something today, and I tried to thank the person. I was like, I and I realized that go. This is a private group. I'm not even Oh yeah. I can't respond to this. You know, I thought, Oh, I wonder how often that's happening in places I

Jessica 1:07:27
don't realize. Yeah, a lot. It seems like a lot. Yeah, I'm sure it's really

Scott Benner 1:07:31
nice. I thank everybody for sharing. Look at it. Found Jessica, and it's been valuable for her and and hopefully for you guys too. Jessica, I have a call in 45 minutes, where I have to make sense and be professional, and I haven't eaten yet, so I'm gonna go and eat something and then come back. And I don't even know what these people want for me. Actually, this is gonna be, oh, I'm looking this is gonna be one of these. I don't know how many of you have jobs where people pretend to be professional, like, where everybody's sitting up straight. And, you know, they're all like a bunch of idiots that like, don't want to act the way they're acting, but we're all acting like, and then I can't keep that going for more than a couple of minutes, so I give up on it pretty quickly. And then you can see which ones on the call are like, Oh, good. We're not going to pretend. And then there's always somebody who just says, setting up really straight. They're like, I'm not breaking character. I'm gonna keep saying things like, you know, out of the thinking, out of the box, and stuff like, exactly. It's very funny. Anyway, I gotta go do that. So thank you so much for doing this and for being so good natured. And I love your attitude. I wish you a ton of success. I think you're on a good path. It's very possible that the sky's the limit for the you two. I think you guys are maybe a little little unstoppable force over the two of

Jessica 1:08:44
you, yeah, well, thank you. I appreciate you having me on. It's I, you know, it was fun. I like talking to you.

Scott Benner 1:08:49
It was a pleasure. I'm glad you had a good time. Hold on one second for me. Thanks. Okay.

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#1685 Blind Electrician

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

A blind Florida electrician shares his remarkable journey through diabetes, vision loss, and a lifesaving kidney transplant—delivering hope, humor, and hard-won wisdom.

+ 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
Welcome back, friends to another episode of The Juicebox podcast.

John 0:13
Hello. My name is John Wells Slager, and I'm from Clewiston, Florida, and I've been a diabetic since 1988 or 89 starting to lose a little bit of track on that glad to be here on the Juicebox and talking with Scott this morning,

Scott Benner 0:31
when I created the defining diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type one diabetes management, along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board and much more. This series must have 70 short episodes in it. We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy. You can't do these things if you don't know what they mean, go get your diabetes to find Juicebox podcast.com go up in the menu and click on series while you're listening. Please remember that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin,

the episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and of course, at touched by type one.org check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes touched by type one.org I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year wear CGM. That's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox Today's episode is sponsored by the tandem mobi system with control iq plus technology, if you are looking for the only system with auto Bolus, multiple wear options and full control from your personal iPhone. You're looking for tandems, newest pump and algorithm. Use my link to support the podcast, tandem diabetes.com/juicebox,

Unknown Speaker 2:34
check it out. Hello.

John 2:36
My name is John Wells Slager, and I'm from clueless in Florida, and I've been a diabetic since 1988 or 89 starting to lose a little bit of track on that glad to be here on the Juicebox and talking with Scott this morning.

Scott Benner 2:50
John, how old were you in 88 or 89

John 2:53
so I was 24 or 25 years old.

Speaker 1 2:57
Okay, I'm excited. I'm sorry. Is there somebody else talking. I'm sorry, that was my phone. Oh, take that in the other

Scott Benner 3:05
sorry about that. No, it's a good way for us to explain who you are. Maybe, right. Certainly. Yeah, you were 2589

John 3:15
okay, yes, yes, I was diagnosed with type two in 89 so I wasn't diagnosed as a type one, and I started on that for me,

Scott Benner 3:26
how long did that diagnosis stick with you and that management

John 3:29
style probably until around 2004 Wait.

Speaker 1 3:34
8999 almost 15 years. Yes, 15 years. You're a type one.

John 3:40
Well, good question. Okay, I asked my my general doctor, who I have a story about as well later on, that very question about six, eight weeks ago, and she said, I'm probably a 1.5 so whatever a type 1.5 is, is probably where I'm at. I feel I'm pretty insulin dependent right now. I'm on a pump right now, and have been since 2004 but what type am I? I don't really know.

Scott Benner 4:12
Isn't that really something? Yeah, John, you use a regular GP for your care, or do you see an endocrinologist? Both. Okay, both beginning was it just the GP?

John 4:24
No, in the beginning, it was an endocrinologist. Oh, but I didn't follow up very well in my 20s. So I was, like, I said, I was 2425 and, you know, I was, you know, back then, it was, you know, I listened to your podcast, and I listened to your guests all the time and and the awareness that that younger folks have now when they are diagnosed, especially with type one, seems night and day to the late 80s to me right now.

Scott Benner 4:53
Yeah, take me back there. What was told to you back then, and what was your process,

John 4:57
my thought process when I left out of there and I. Couldn't even tell you my doctor's name right now, I can't remember. I know it was a man.

Speaker 2 5:03
It was here take these pills and stay away from sugar kind of thing.

John 5:12
That's it, yeah. And I really didn't follow up with any kind of dietitian or anything like that. I was always pretty fit. You know, in my 20s, I was, you know, I worked out quite a bit and and I was fit, but so I stopped eating stuff with sugar in it, you know. But, you know, I may have some chips and stuff though, that doesn't have sugar, right? So that carb awareness was not even in the picture for me, okay? And that obviously is not a good situation for somebody dealing with type two diabetes, that's for sure, let alone a type 1.5 or whatever I eventually morphed into, you know, right as my pancreas slowed and almost to a stop, my opinion right now, you know,

Scott Benner 5:58
just metformin and and some diet considerations. That was what you were doing.

Speaker 1 6:03
Yes, okay, and that was what I was doing, like, 14 years.

Scott Benner 6:10
Yes, what were your a 1c during that time,

John 6:12
Scott, I couldn't tell you. I didn't follow up, like I said, as I should with my doctors in those days. You know, I moved here to clueless. Then in 1996 I came to Florida. I'm originally from Maryland, and I was diagnosed in Maryland a girl I was dating. Then, basically, during my diagnosis, she she basically said, she said, I saw a flyer where I work, and it said, If you pee a lot and you drink a lot, you better watch out for diabetes. And she said, You pee all the time, and you drink all the time, and I'm an electrician. I was, you know, in the field, a lot, out outside, a lot. And I told her, I was like, you know, I'm thirsty because, you know, I work outside and those kinds of things, and, and I pee a lot because I drink a lot, you know, that was my thing. So I got one, I got one of the little test strip things, and, you know, you peed on it and it turned whatever color it turned instantly, blue, orange, whatever it was. And so that's kind of how that went, you know. So again, as I went through those 1415, years, I took those pills and I did the best that I could, I would check my sugar, but not regularly. I asked my wife, Chris, actually, yesterday, I said, Do you remember early on when we met, and as I was, you know, on the oral meds, I checked my sugar much, and she basically no, which I didn't, you know, and obviously my fault that I didn't check it. When I checked it. It wasn't like it was 500 or anything or high, you know, I never blew those kinds of numbers. It was, you know, a lot of times in the upper one hundreds, and, you know, in the two hundreds, sometimes, okay. And, you know,

Scott Benner 7:53
were you not checking because you were lazy about it? Were you not checking because you didn't think you needed to, like, were you ignoring some direction, or were you lacking direction?

John 8:05
Probably a little bit of both. Okay, I was a very active person. And, you know, an electrician is a very active career. You know, lot of walking, a lot of up and downs, lot of exercise. And then I also worked out quite a bit. No excuse to not really check my blood sugars and mind those. You know, you know Scott, you know it's always What if I'd never look back. I'm not that kind of person. But if I could go back to 1989 with the knowledge that I have today, I would say, I don't want those pills. I want to be on insulin or something. What else do you have? Yeah, and you know what I mean, but we cannot go back. No, of course. So I think a little bit of both, though, you know, I would say, you know, did I just ignore it, or was I unaware of it? Probably a little bit of both. I would say, kind of through those years.

Scott Benner 8:59
Yeah, so we don't know what our a one sees we're not taking the world Med, exactly like there were supposed to be correct. Do you have an expectation back then about what you're doing to yourself? You know what I mean? No,

John 9:13
not necessarily. Okay, I can tell you this. When I moved to clue, I moved to Clewiston. I met my wife in 94 and I moved to Clewiston, America's sweetest town, by the way, right on Lake Okeechobee. If you don't, anybody knows where Clewiston is. It's a very small farming community in South Central Florida, okay. But I moved down here and I got up with a doctor here, a family doctor that my wife had gone to for years and years, delivered my wife, actually, and an old country doctor, if you will, accepted payment with vegetables and and actually, my wife's birth was probably paid for by watermelons and tomatoes. So that kind of doctor, a good, excellent doctor, though. And Scott what he told me the very first. Time I went to see him was, you know, you need to try to try to keep your sugars, 150 or better. He said, If you keep your sugars, 150 or under, you'll never have a problem. And this was 1996 when I established care with him. Okay, he is. He has since passed. But, and then, you know, obviously the knowledge that I have now, you know, I look at 150 and do that little conversion everybody does on the internet, and that's a seven. That's where everybody tells you to be right, seven or better on an A 1c kind of thing, you know, like a target for diabetics. Yep, Doc Forbes knew what he was talking about. You know, I continued to do the best that I can on those oral meds.

Scott Benner 10:41
So you were shooting for that seven just with the way you were eating. Is that? I mean, he's telling you to take the oral meds, which, right, weren't getting taken every day. Is that correct?

John 10:50
No, they were getting taken. They were okay. They were they were

Scott Benner 10:53
but we weren't tracking outcomes to know if the medication was enough for doing anything, not specifically. And meters, you're not, you're not testing on any, yeah, I

John 11:03
had, I had, basically, you know, your blood glucose meters. And I was testing, you know, but not every day, not religiously, like, got it. I should have been, yeah.

Scott Benner 11:12
Okay, so what's the first time that you I mean, there must be something that happens that makes you think I need to be paying closer attention to this. Like, what was, what was that thing?

John 11:23
Yeah, that thing was a job site in South Tampa in October of 2003 like I said, I'm electrician. We used to do a lot of Lowe's Home Improvement centers all over the state. So I was traveling out of town quite a bit, you know, for three, four months at a time, while we built, built these, these buildings, and I was in charge of them. And many, on many occasions. And Scott, you know, like at a Walmart, places like that, they have that big, huge light poles in the parking lot, real bright, right? Like a stadium, of course. So probably about noon one day, we were just getting the power turned on in the building, and I turned all the breakers on to make the lights come on. And I walked out there to look at them, and I will never forget the day. And I looked up to see if they were coming on, and I saw, like a big brown splotch run across my left eye. My vision in my left eye was like a little floating blob looking thing. Okay? I was like, Oh, wow, that's probably not good. This is 2004 I am 40 years old. 2003 39 sorry. So I, I went to the job trailer, and I got a yellow pages and and I called an eye doctor. I went that day to eye doctor in Tampa, Florida. He did a retinal examination on me, and he said, You need to go to a retinal specialist now. And I was like, well, it was like a Wednesday, Scott. I could be called a workaholic, I think. And I told him, I said, Well, it's Wednesday. I mean, could it wait till like Friday? You know, I'm up here working. And he said, No, you need to go like today, you know, I called my wife, and I headed back to Clewiston and had an appointment the next day, and went to a retinal specialist in Fort Myers. And that set off a course of events that lasted about a year. Had my first eye surgery in April of oh four, tax day, actually, April 15 of oh four on my left eye. I know that you use Google a lot. Scott, check out a vitrectomy. Vitrectomy. I think I've seen it before. Yeah, yeah. You don't want to see it too much. It's a pretty, rough looking, I think, for somebody that would watch and see exactly what they do. But I had that surgery April 15 of oh four. The results weren't real good. So when I took the patches off, I saw fingers. Could see fingers kind of, you know, real close, within six inches of my face, but that was about it. Basically, my retina had detached. They tried to put it back on, and it didn't work very well. It's all went that. About six months after that, I continued to work with one eye. Basically, I could see a little bit out of that left eye, but not much. It was October 21 of oh four that after some troubles with my right eye. I had my first eye surgery on my right eye in October of oh four, when they pulled those patches off, the next day, had pretty much a similar result in that eye. Very limited vision. I could count fingers, that was about it. So basically, after that surgery to my right eye in October of o4 I was pretty much blind. After that little bit of vision, not a whole lot. Definitely couldn't walk around by myself. And subsequently, after that, for about two years, I went back and forth from Clewiston to Memphis, Tennessee. Seeing the specialist that I was told by the guy in Fort Myers, the only guy that could help me was either in Memphis or at Bascom Palmer in Miami. The gentleman from Miami was out of the country for three weeks, and so I established with a guy in Memphis. Crisscrossed from here to Memphis for two years, eight more surgeries, pretty much has left me totally blind since then. So basically, I'm coming up today is October 9. So here in about 10 days, about two weeks, it'll be 21 years.

Scott Benner 15:33
21 years. So you haven't seen anything. This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pumping algorithm, the tandem mobi system with control iq plus technology features auto Bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox, this is going to help you to get started with tandems, smallest pump yet that's powered by its best algorithm ever control IQ. Plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead, and it adjusts insulin accordingly. You can wear the tandem mobi in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket head now to my link, tandem diabetes.com/juicebox, to check out your benefits and get started today. Why would you settle for changing your CGM every few weeks when you can have 365 days of reliable glucose data? Today's episode is sponsored by the ever since 365 it is the only CGM with a tiny sensor that lasts a full year sitting comfortably under your skin with no more frequent sensor changes and essentially no compression lows. For one year, you'll get your CGM data in real time on your phone, smart watch, Android or iOS, even an Apple Watch, predictive high and low alerts let you know where your glucose is headed before it gets there. So there's no surprises, just confidence, and you can instantly share that data with your healthcare provider or your family. You're going to get one year of reliable data without all those sensor changes. That's the ever since 365 gentle on your skin, strong for your life. One sensor a year, that gives you one less thing to worry about, head now to ever since cgm.com/juicebox,

John 17:44
to get started. No, I'm black. Blind. Scott, okay, I don't see anything. I tell people a lot of times. I'll come home from work and and I'll be sitting here my wife, beautiful wife, Christine, you know, she may be working late or something, or out with some friends, and if I come home, say, at five o'clock in the afternoon, you know, I don't turn on any lights. I don't really need them. And Chris will come home maybe, maybe she gets home at eight o'clock or something. She comes in, she says it's dark in here. It's like, oh, is it? You know, because I don't need lights at all,

Scott Benner 18:16
John, they don't tell you. The The upside of losing your vision is that your electric bill goes

John 18:20
down, not with my beautiful wife. She loves lights. But you know what the joke in this house is, Scott is I tell her all the time, Chris, you're not allowed to rearrange furniture. It's not allowed in here, and if you do, I'm gonna turn all the breakers off in the house, unscrew all the light bulbs, and so

Scott Benner 18:38
that fixes that I have to ask you said you come home from work, What work are you doing? I

John 18:42
am an electrical contractor. Still, yes, before I lost my sight, I was an electrician superintendent that would work in the field. I would be in charge of those larger projects that I referenced, right? You know, used to do Walmarts and lot of box stores like that. Is what they call them, retail, you know, large, you know, pretty good size retail projects. So I was in charge of 15 guys, 20 guys, whatever it takes to get the job done. And so that was kind of what I did. Had became the vice president of the company that I was working for here in clueless and more of a supervisory role when I lost my sight, but I would still be out on projects a lot of times, guys, you know, would need some help. And, you know, I would tutor them along, if you will, and that kind of thing. So after I lost my sight, if you're an electrician, kind of hard to do anything out in the field or physically you're doing the electrical. So I had a very, very, very gracious boss at that time who basically made a place for me in the office, being that that tutor to some of the younger guys as they were coming up and learning how to run work and how to manage people. Since I had done it for a while, I, you know, I was very accustomed to that kind of thing. Yeah, so, you know, but answering the phone. Those kinds of things and and getting used to a computer, which was a four letter word for me back then, kind of still is, depending on the day, as you saw, my technical issues here before we got started, but I learned how to use a computer blind. Once I lost my sight, they sent a gentleman from the Division of Blind Services to basically show me how to

Scott Benner 20:24
work again. That's really impressive. And do you read Braille?

John 20:27
Now, no, I never learned how to read Braille. You don't really have to learn now,

Scott Benner 20:32
okay, I guess everything can talk to you at this point, right?

John 20:35
Yeah, yeah. Everything you know, like, you know, my iPhone and and my computer, I use a program called JAWS on the computer and stands for Job Access with speech. It's a pretty powerful program. A lot of visually impaired people use it. You know, that enabled me to start communicating in a management role at my office with purchasing and management. You know, I'd never sent an email before I lost my site. No, Kevin, no, no. And again, you know, the one thing I did on the computer with my site, I wanted to surprise Chris with tickets to like Kenny Chesney or Brad Paisley concert. I don't remember which. It was a country artist, and by the time I got our tickets, because those things time out, like if you're picking your seats and stuff like that, I don't know if you're familiar, but I am. We were in nosebleed section, dude, by the time I was able to get everything in there, and so I despised computers.

Scott Benner 21:36
You didn't care how far you were from the stage. Your wife probably didn't like it so much,

John 21:40
right? Right, right, yeah, but, uh, but actually, that was before I lost my sight.

Scott Benner 21:45
Oh, you were that bad. I didn't realize that's what

John 21:50
I'm getting. That's what I'm getting at terrible on the computer. But anyway, once I learned how to do the computer, navigating that again or not again, initially, I would say, because I didn't use a computer, you know, I was able to start, you know, accessing a National Electric Code, which is kind of the Bible for electricians, and establishing myself a little bit in the office where I could, I was able to do a few things, you know. And, you know, God blessed me with a a very good memory and a ton of patience. Those are key to being blind. Scott, I would imagine, just imagine, you know, I mean, you got to have, you have to have a lot of patience, because you're always waiting on a ride, or if you need some assistance getting somewhere, or these kinds of things. And the memory, you know, think about it. When you know, where are your keys? You know, where'd you, Where'd you put the food for your iguanas in there? If you set that down, you don't remember where you put it. The iguanas are gonna get hungry, man,

Scott Benner 22:49
go on, and it's gone forever, right? You have, yeah, yeah. You have to add, yeah. You probably make up a lot of systems, I imagine, for things too,

John 22:57
yeah, yeah, a lot. I i put stuff in the same place all the time, right? You know, when I eat my drink goes to the right, upper right of my plate. You know, there are systems. Scott, you brush your teeth every day, right? Couple times a day, probably, yeah, close your eyes and put the tooth paste on your toothbrush next time you do it, challenging, challenging without getting your fingers messy, right? Interesting? Yeah, every little thing. But if you squirt the toothpaste in your mouth, you don't have to put it on your toothbrush. Oh, little little easier, right? So, there's just different little things when you're blind, but John,

Scott Benner 23:34
that's a better idea. What else are you doing that I should be doing? Oh, well, you drink coffee. No, I don't, I'm sorry. Okay, it's quite all right, yeah, I

John 23:44
drink it. I love it. Well, when you can see, drinking coffee is very easy. You put the amount of cream you want in, you pour it to color, and you drink it. Yeah, right. So when you're blind, you have to use four senses instead of one to make a cup of coffee. You ready for this? Yeah, I am number one. You open the cream and make sure it's not sour. You can do that with smell, all right. So then you put the cream in the cup to make sure how much cream is in there. You use your finger in it to see how much cream you pour it in, right? That's two. That's touch. Then the second, the third one, I'm sorry you pour your cup. You don't want to use your finger to see how much coffee is in there, because you'll get a burned but you listen and the pitch changes as it fills. That's three and then obviously you give it a taste to make sure you have it right. That's four senses to do, what one used to do,

Scott Benner 24:57
where you used to just pour it till the color looked right. You were done perfect.

John 25:01
You know it's gonna taste good. You don't have to smell it. You look at the label on the cream to make sure it's not bad.

Scott Benner 25:06
John, when this happens to you, do they say this is from, like, mismanaged diabetes? What do they tell you the the reasoning

John 25:15
for this is, yeah, diabetic retinopathy. Okay, so my vision loss was caused by diabetic retinopathy. The reason I had 10 eye operations Scott is because during the healing, once they reattach your retina, which is a very small membrane in the back of your eye that basically connects to your optic nerve to allow you to see the scar tissue from the healing process was ripping my retinas back off so my body, the miracle of my body, was trying to heal, but it was being too aggressive. The scar tissue there from the manipulation in the eye surgeries was grabbing the retinas and pulling them back off and detaching them again, and then I had to go back and they reattach.

Scott Benner 26:09
Is there any conversation with endocrinology about Well, obviously, things aren't going well. We need to do a better job for you.

John 26:17
Yes, okay, yes. After I lost my sight, I went on insulin.

Scott Benner 26:21
Okay? I mean, there's people that come on here all the time and talk about balls that are dropped by physicians, and then you have to go back in, and they're, you know, they're basically like, well, oops, you know, but the oops doesn't usually end with you not being able to see correct. And I mean, I realize you have your part in it as well, but, you know, along the way, if someone would have put you on insulin. Maybe this doesn't happen. Maybe you're tested your C peptide or, like, you know, whatever. I don't know, what else could it be done? But it doesn't sound like any of it happened. So is there, I know you said you don't look back, but is there anger there from you?

Unknown Speaker 26:55
No, no, no,

John 26:56
no, because why? I've never been angry because of God. Okay, so not

Scott Benner 27:03
because you feel like it's, it's your fault, or like, no, no, no,

John 27:07
okay. I don't think it's anybody's fault. I see, I think our God has a plan, and this was all planned. That's how I feel. Okay? Now I've discussed this with a lot of people. There's a lot of people that say, Well, how do you have that attitude? If that was me, I'd put a gun in my mouth.

Unknown Speaker 27:26
Well, about that was me. People say that to you,

John 27:29
yeah, really, I've had employees say that to me. You

Scott Benner 27:32
know, when you hear people say, like, Oh, I could you got diabetes. I could never give myself a shot. Is that their version of that? Oh, you're blind. I couldn't live that way. Yeah. Oh, Jesus. It's

John 27:42
very sad. Yeah, it's very sad in today's world. I think vision sometimes can be a detriment. I think that vision, lot of times, people are crippled by their vision, because they come to conclusions about things before they even let those things happen. They come to conclusions about who somebody is because their eyes are lying to before they even know that person.

Scott Benner 28:07
I thought you were crazy when you started saying that, but let me tell you something that I just shared probably with only one person outside of like, you know, my family. I don't look at people when I'm recording with them on purpose, because I don't want to make a snap judgment about them. And you will, you can't help it. It's human. You can't help that. Yeah, people are all the time like, why don't you have a camera? And I'll say, like, oh, it's not on video. It's not necessary. And some people say, well, it's easier for us to talk. If I hear when you stop and start, I go, Oh, don't worry, you'll get used to it. It's like talking on the phone. The real, honest to God truth is, is that I found in the past that if I put my camera on, I make some sort of like a micro judgment about the person that changes the conversation.

John 28:49
Yeah, yeah. That person may look like somebody that you don't like. Well, that reminds me of my cousin, that that rascal, yeah, and boom, now you're always thinking what your cousin did to you, or something silly, you know, just silly stuff like that. It happens, right? Just does, yeah, again, my, my attitude is, I really don't think about being blind. Don't get me wrong, those first few years when we were, you know, fighting for my sight, and going up to Memphis and fighting with insurance companies. And, you know, Chris, she was absolutely crying one time when we were up in Memphis, because they said that they're, they wouldn't cover the surgery and this and that, you know, you know you're talking to somebody like that, and they don't understand what you're going through, you know? And that's, that's what's tough. I mean, it's, it's like that with everything. I mean, I hear you talking about, they don't want to give you a pump, they don't give you a Dexcom. You got to test your sugar for two months before. You know, to make sure that you're diabetic or whatever, you may get better from type one. I mean, come on, give these people a Dexcom, man, right, right. You know, instantly you gotta, you gotta have it. You know. Why are you gonna make that? Those people struggle through that? It doesn't make sense. It's, it's all about money, and that's a shame. You know,

Scott Benner 30:02
once the pivot happens there with your with your diabetes, like, where does that new information come from? The new focus? How do you, how do you figure out how to take care of

Unknown Speaker 30:11
yourself? Little bit of a challenge.

John 30:15
So first I was on the insulin pens. I was on a 7030 mix, I believe was one of the things I was on. I think that was the first one I was on. The pens weren't too bad, you know, you click them. You can listen, you know, I don't remember what dosages or anything was 20 years ago, but click it, you know, however many units, and stab yourself and go with it wasn't long after the pens, though, that I got introduced to an insulin pump, probably about, I've probably been on a pump about 20 years. Okay,

Unknown Speaker 30:46
yeah, I use a mini med pump.

John 30:50
He has the physical buttons on it that you can, you know, listen and count, count the audio beeps and those kinds of things got introduced shortly after that, probably during that process your podcast. And I told you this when I initially emailed you, in the last years, it's changed the way I manage completely. Don't get me wrong, I have a really good endocrinologist, and he told me, but he did not stress the Pre-Bolus to me enough and just some of the tools that you you have introduced to me, you know. And I think I told you that I had a kidney doctor tell me, I don't know about it. Six, eight months, 10 months ago, whenever I come on to your podcast, or found your podcast, I think I was a 7.4 a, 1c, is what I had. He said, you need to do better than this. So I started Googling a little bit, and I found your podcast, and just some of the, you know, the Pre-Bolus changed my deal. Man. The reason why I was 7.4 I had, I had a really bad low, probably about, I don't know, two months before that kidney appointment. Okay, a real bad one. And it was all about pizza. It was, it was a pizza low man. And I hit it perfect. I thought I had it perfect. I've heard you guys, you and Jenny and them, talk about that. That how pizza, you know, in rebound and jump on you. Yeah, it jumped on me that night. Chris wasn't there. I don't know what happened. Okay, she, she kind of shook me out of it. I mean, the lowest I saw was 40, but I think it was lower than

Speaker 1 32:24
that. Did you pass out? Did I pass out? Chris, close. You said,

John 32:29
close. Did you see? I wanted to completely out. I beg your par. Did you have a seizure? No, no, no, no, no. I was just, you know, I'm good, I'm good. And I was watching it. It it was 60, you know, 70 something. And then it was 60 something. And I had some more Skittles, and then it was, you know, yeah, 62 and the last time I remember, it was like, 62 or 60 or something like that. And then she's shaking me. She's because you get out of she's putting, you're saying, giving me coke. She's like, you're saying off the wall stuff. And, yeah, yeah. She said, I'm not myself. But, you know, I think everybody gets like that when you get into that state. You know, of

Scott Benner 33:10
course, hey, I'm embarrassed, John, John, I'm embarrassed to tell you that you made me think, like, maybe I'll get a pizza tonight for the Eagles game.

Speaker 2 33:17
I'm telling you, I don't do you're not eating pizza anymore.

John 33:24
No, man, I kind of avoid it. Stem from potassium. My potassium sometimes gets a little high, so I kind of stay away from a lot of tomato stuff and potatoes things like that. So basically, I was, what had happened with that 7.4 I was, I was scared to death. Yeah, the Bolus right to you know, I mean, I didn't mind 150 up, that's good. Good enough. I'm good. And, you know, then I started listening to your podcast. There's just so many things in your podcast that are so important. I've shared your podcast with so many people over the last six months, everybody that I talked to, my doctors, all of them, I appreciate it. And, yeah, man, it's, it's, it's a life changing thing. You know, Pre-Bolus, the bump and nudge the it's not stacking if you need it. And you know all of them, all, all of your your pointers, man, are are just spot on. They work perfectly.

Scott Benner 34:21
I appreciate knowing them. Yeah, yeah. I have to tell you, the most fun thing about going back and forth between you, you know, and me and email is that you pretty consistently refer to yourself as a blind electrician. You're like, it's John the blind electrician. Like, I get that, like, that email from you a lot, and I tell you, for the last six months, you know, I just been thinking, like, I can't wait to find out if he's still an electric electrician or not. Because, Oh, yeah. I mean, what are you, you know what? I mean, you'd be, you maybe be a surge tester at this point. Like, just reach out if John yells, don't do it. Yeah.

John 34:53
Yeah, yeah. So, I got curly hair all the time, right? But, uh, so. But. Anyhow, so I am an electrical contractor, yeah, yeah. So I wound up taking that certified electrical exam blind back in oh seven after I lost my sight, me and my wife decided to try to buy my boss's business, which we subsequently did. So I sat a state certified electrical exam blind up in Orlando back in those seven Oh, and yeah, that was very interesting as well. Were you the first person to ever try that? I don't know if I was the first person, but when I got the call that I had passed that exam from the people from the state, you'd have thought they were related to me. There was two or three ladies on there. They were so fired up, yeah. So I was blessed and able to pass that exam, and, you know, so we wound up buying our business that I had been working for for 810, years from my boss back in oh eight, and then also, and we've, we've been running it ever since. So I just feel super blessed to be able to continue working. You know, I don't know what I would do if I couldn't work. You know, I'm 61 years old now, and, you know, people talk about retiring, and it's like, and I think I'd get bored. I really do, you know, I mean, there's only so much you can do blind. I mean, I've golfed a few times blind and fished and, you know, those kinds of things. But, and I like to write, you know, I'm kind of an amateur writer. I wrote a book back in 2020, okay, so I have, you know, a few things that I'm interested in, but, you know, my work is what I love to do. You know, I'm an electrician. I'm a blind electrician, but I'm, I'm still electrician at heart, you know, so and my memory allows me to work with the folks that you know work for us, and, you know, help them along when they have questions and stuff like that. And I have some really, really, really, really good people that have helped me along the way. Talk

Scott Benner 36:55
about that a little bit beyond your wife and your boss. Sounds like he made a job for you in the beginning, and then you grew into it. But he did, what about day to day stuff like, where do you count on other people?

John 37:06
I count on so many people, Scott, I mean, our town, small town, like I said, on Lake okoby. And I could call literally dozens of people right now if I needed a ride to go somewhere. You know, I don't do public public transportation at all. I have so many friends and family around here that help me out. You know, if they're in town, you know, though, they can, can help me do this or that. My staff is awesome. I have gentleman, right hand man that's working with me, that's been here since 2002 he's been worked for our company for almost 25 years now. You know, he'll do anything for me, aside from work, if I need something. You know? Yeah, you're my boss. Is my next door neighbor. He's still we live right alongside of each other. When I say my boss, the gentleman that I bought the business from, got a great church family. You got it? Yeah, this little town is something else. I'll tell you. It's there's nothing like it.

Scott Benner 38:08
John, let me. Let me share with you. I was flying to Orlando a few weeks ago to speak at the touch by type one event, and I overheard a guy talking on the plane, and he was flying from New Jersey to Orlando to help a friend of his just go grocery shopping and do some stuff that he needed. And he was a guy. He was in his 60s, but he had a friend that was much older than him, you know, probably 1520, years older than him. And he just the guy was it was getting tough for him. He needed help. He couldn't find help anywhere else. This guy got on a plane and flew down to help him. I was, that's amazing. Super impressed by that, you

John 38:43
know, yeah, it's amazing. You know, people, there are things Scott in this life that people do that you don't know about, right? And, and I, you know, I'm a Christian man. And I, you know, I believe God puts people in our lives, right? Things don't just happen they you know, I mean, just like my vision loss, that just didn't just happen, you know, there's a reason for everything in our life, I think. And, and I'll tell you, you know, you know, I had another, another health problem hit me a few years

Scott Benner 39:14
back. I wanted to ask you about the rest of your health, actually. So this is perfect. Tell me about that. Well,

John 39:19
it kind of ties into your your friend coming down from, yeah, would you say Atlanta, Atlanta? You said, Oh, they

Scott Benner 39:24
went from New Jersey to Orlando. Jersey, yeah, Wow, geez, yeah.

John 39:28
That's, that's a trip, man. That's, that's, that's awesome. That's love, right? There is what that is. I wanted to share with you about love, something that happened to me so I had struggled with a kidney disease now for 20 years or so, probably about the same time, I lost my sight, you know, I started to see a nephrologist and my my kidney function, had, you know? Had you know, was in like the 40% range there for years and years and again, you know, diabetes, long time diabetic. And you know, it started decline. And, you know, 15 years ago, you know, 35 you just sitting watching it, do the best that you can. You know, kidney function is all about blood sugars and blood pressure. If those get wound out, our kidneys don't like it. You know, I struggle with hypertension. I take blood pressure medicine. I have for years. So that's, you know, something else that I had have as far as a health situation. But anyway, so my my kidney function had declined, and it kept going down and and I remember, I go to that, down to Cleveland Clinic in Weston, and my kidney doctor, I don't know, about four or five years ago, I guess Scott, I was in the 25% range kidney function, which is, it's a GFR, is what it is, okay, that's the test. But I can't remember what it stands for. I should know anyway, that's, that's basically your function number, right? So I drifted down like 2423 for like, two or three tests in a row, two, I think it was two. He said, If you come in next time with with another sub 25 on that GFR, he said, you'd be eligible for a transplant. And my wife could tell you right now, if she was on here with me, I started sweating like crazy in there. I was like, oh my god, oh my god, this is real man. Yeah, I couldn't get out of that that doctor's office fast enough that day, it continued to decline. In 22 probably the summer of 22 it had gotten down to 15% function, and it was drifting around there, back and forth, 14, 1516, all in there, yeah. So I wound up getting on a transplant list. Well, you know, first, basically, you have to get tested for went through a whole bunch of tests, take a whole bunch of blood out of you and make sure you don't have cancer or something like that. That would disqualify you, right? And in the meanwhile, Scott, I was me and my mom were talking, my mom has helped me through me and Chris through so much, through my vision, loss and everything over the years. You know, moms are moms, right? And she's awesome. I was talking to her. I was like, I said, Mom, you know, they're talking about, you know, a living donor kidney is better than a deceased donor. You know, I was doing my research on it stuff, and how do you ask somebody for that? How do you ask somebody Scott for

Speaker 1 42:28
that, right? I don't, I can't wrap my head around it, actually, right? I know.

John 42:33
And she's like, well, you know, I've seen on the internet where people do the Facebook and this and that I'm not really a Facebook guy, what have you? I sat and thought about it for a little while, and I drafted a letter to my family and friends, basically explaining my situation, where I was at that kind of thing. I sent a mass email out to a lot of lot of my family and friends, nearly everybody I could think of, and I attached this letter, and I, you know, basically said, you know, hey, can you see my letter? I'm struggling with this situation in my life right now, and take a look at it, consider. And it basically talked about my the kidney disease and the function and where it was at, and how a lot of people get to that area. Now, I was not on dialysis. I was never on dialysis, okay, but I reached out to all these people, and it was the hardest email I push send on in my life, really hard. So I was going through all my tests at Cleveland Clinic. You know, that kind of thing, Scott, and one day I was at work, I got used to the Cleveland Clinic phone number 954-659-5000, by the way, so that number comes across on my cell phone, and I was like, wow, that's probably doctor wants something, you know, another test, whatever was the lady at the transplant center. And she said, You have a couple more take you got to get colonoscopy and this and that, we've had an overwhelming amount of people who

Unknown Speaker 43:57
want to give their kidney to you. Yes.

John 44:01
She said to me, we're going to list you today. Before these all these tests are done because we list only list on Wednesdays. It must have been a Wednesday we only put people on list on Wednesdays. Our committee has decided to put you on we've never seen anything like this. How many people? They didn't say they didn't tell you. They can't do that because a HIPAA, they can't tell you anything. I hung up and literally started crying.

Scott Benner 44:26
Yeah, you almost made me cry just now. Wow. That is love.

John 44:29
That is, it was unbelievable. The amount of how loved I felt, how how that makes you know, there's a God man, and I'm telling you, it was most overwhelming thing I've ever done, I've ever been through, yeah, so it went along. I had a couple of buddies, you know, I got a good buddy out in Oregon, kind of a hippie guy, and he, he was keeping me updated, wow, I'm calling every day, and they said that I'm not written, you know, they haven't put me in so, yeah, I knew he, he had volunteered. Right, right? And I have a very best friend in Maryland, and I knew he had done it. But aside from that, I had no idea you know who and what, you know what, not. So

Scott Benner 45:11
John, and that happened, you got that kidney. I did get that kidney. Yeah, yeah. So I want to know how that changed your life, and I want to know about the relationship with the person moving forward. So first, you know, obviously, what is it? What is the the new kidney mean for you?

John 45:26
It's a rebirth. I celebrate three birthdays now. I celebrate my birthday in 1964 March 17 of 23 that's when our kidney transplant occurred, and I now have our kidney in me, and I celebrate the birthday of my

Scott Benner 45:47
angel donor. Did it end up being a friend of yours or a family member or

John 45:53
not a family member? So very special friend of mine? Yeah, we go to church together, Scott. She is actually my general doctor as

Scott Benner 46:04
well. No kidding, yeah, did that strengthen your relationship over time, or was it already a really great relationship to begin with?

John 46:11
I think it was a it strengthened our it actually ties

Unknown Speaker 46:16
people together.

John 46:19
It's such a selfless act, sacrificing a part of yourself to save somebody else, sincerely. And does that sound familiar for a Christian person to say that? No, no, of course, sacrificing for somebody else,

Scott Benner 46:35
opening yourself up too to the possibility that, if she has a problem later in life now she only has one kidney, you're only putting your chips on the table,

John 46:42
yes, yeah. And she has, she has kids, so, yeah, that is a such a selfless act that, you know, it's still to this day is, you know, there's no way that I could ever repay that gift. It's impossible.

Scott Benner 46:59
Yeah, I did want to ask you, has it ever felt the gift was too big? Did you ever, do you ever feel like, what the word is here, like you ever feel like you're not deserving of it, or that, you know, you feel guilty that it happened anything like that?

John 47:13
No, I don't feel that way, because, you know, I know the heart of the person that shared this experience with me, okay, I'm good friends with her husband as well. And I was told once that sometimes some of the

Speaker 2 47:30
patients that walk into her office,

John 47:35
you know, you get to a point with some patients obviously, that you you can't help them anymore. I was told that this is something she can help. John,

Unknown Speaker 47:45
so beautiful.

Scott Benner 47:46
Well, it says a lot about you too, John, because a doctor intersects a lot of people with issues, and you can't give of your own body that many times. But, and I would imagine she's probably never done it before and probably won't do it again, but something about you motivated her to do this thing.

John 48:02
You know, I don't know what it is about me at all. I don't think it's me at all. I just think it's the heart and of the person that generously gave to me.

Scott Benner 48:13
Yeah, that's very kind of you to say that, but I'll tell you right now, nobody's given me a kidney. So like,

John 48:21
I think you'd probably be surprised.

Scott Benner 48:23
I could probably write a pretty good letter, and I bet you that people Oh, I didn't get that. I think it would have been my junk mail. So sorry.

John 48:30
Oh, yeah, our kidney is doing great. Things are good. I just feel blessed to be here every day. I mainly wanted to come on to let people know that, heaven forbid anybody have to go through complications from diabetes. But all complications don't, you know, don't let it limit you, like I've heard countless people come on with young people being diagnosed, you know, parents and even some of those young people, it doesn't limit you. And even vision loss that doesn't limit you, it doesn't make you who you are. You know, struggling with diabetes, that's, you know, that's just part of life. It happens. And, you know, dealing with those things is the Bible tells us that, you know you're going to have trials in life just the way it is. But God overcame all that. There's way more to it than me walking around here bumping into stuff. It's Hey, you know, everybody does that, yeah.

Scott Benner 49:27
Is there an ability for you to separate yourself from your religious beliefs? Like, do you have any idea what it is about your personality that even opens you up to the idea of being available, to the idea, you know, prescribed you by your religion. Do you understand? I mean, like, there's plenty of people who hear religious messaging and they still don't have your response to it.

John 49:49
Well, you know, I met with some guys just this week, and I was, I was telling them about this. There's a lot of Christians, Scott that have that exact day when they say I was. Because I took Jesus as my Savior on this date, and I was at this location, a lot of Christians, I think, had that testimony. I don't have that

Speaker 1 50:09
just always felt this way. No, no, I didn't.

John 50:13
I always believed, and I always went to church, maybe on and off, if you will, right? I sit here at 61 years old. Now I look backwards, my thing is, he was there all the time. I know it. I don't see to me a flesh and bones reaction to some of the things that I've experienced without something else being there. And I think about that footprints, picture and poem, you always see, a lot of people have them in their house, of course, yeah, you ever seen that one? You know what I'm talking I do know that reminds me so much of my life. How so well, because when you're carried and you don't have that burden, it's not hitting you right? Your steps aren't in that sand. You're not really walking through it now, why is that you're there and you're going through it? Right? That's all I can relate it to. I don't really have a perfect answer for that, but I just know that I was carried through a lot of these situations by and I don't want to just

Scott Benner 51:17
you're not dismissing people's effort or, yeah, I understand that's

John 51:22
not what I'm saying, not because I've had so much help, my gosh, but there are those times when you're quiet and by yourself, you know, yeah, I don't drift into that. Why me? And how come and why? You know, I could go back and my first eye doctor that I chose probably wasn't the perfect one for me. I think he might have made some mistakes. Scott, yeah, but I can't sit and thrive on that. What good does that do? It

Speaker 1 51:49
is definitely not gonna help you. No, it definitely is gonna help you.

John 51:53
No. So, so that's just kind of how I view things. And, you know, I tell people all the time, and my wife, I don't think likes it when I say this, but it's the truth, if God gave me back my sight right now, sitting right here in this living room, you know what the first thing I do, Scott, I wonder. Close my eyes.

Scott Benner 52:10
You really feel like you're seeing the world differently. Now,

Unknown Speaker 52:13
I do. Yeah,

John 52:14
I do. And think about it. You know, think about closing your eyes for 21 years, Scott, and then open it again. I don't even know how to imagine it would be sensory overload. Yeah, yeah. I mean, what are you 5354 I am looking for. Yeah, yeah. You ever go to like, a place that's like, way too loud, way, way, way too loud, sure, it gets a little too much, right? I see that times like 100 million open in my eyes, like, wide open right now, like I could see everything. It would be like I'd have to close them. I know I would, well, I'd want to peek them back open, obviously, you know, once I get that miracle. But yeah, and, you know, I believe miracles happens every day. I know I had one two and a half years ago when I was blessed with our kidney, your kidney, yeah. So, you know, I know they happen, so I'm if it doesn't happen in this life, that's okay, but I believe it still

Scott Benner 53:07
will, John, I feel like I hear you telling me that you're comfortable and happy where you are, like, that's pretty astonishing, because I don't know that people can say that, who can see all the time, well, is that fair? You're you? It's super fair. Yeah,

John 53:20
it's super fair. And, and, you know, again, you know, I listen and, hey, I'm not perfect. Nobody is right. And do I get in a bad mood? Yeah, not too often. On this, honestly, every now and then, my wife keeps telling me, you sound more and more like your dad every day. And I was like, well, that I think all of us are like that, aren't we? Scott,

Scott Benner 53:41
hey, listen, I do know from the grocery store sometimes, John, I'm like, we got to go. And at

John 53:45
54 you probably things just come out of your mouth. Now that might not have come out when you're 24 or 30. My

Scott Benner 53:53
wife's like, where are we gonna go? And I'm like, I don't know, but I just saw a little kid spit in a trash can. The dad didn't yell at him, and we got to go wherever. That isn't going to happen. I want to go to she's like, I don't think we're getting away from this. And I was like, okay,

John 54:04
yeah. And that's what, how it is. As you get older, you just say what you want. A lot of times, yeah, and no filter, my wife just said, and lot of times that happens. And that's, you know, I want to try to avoid that, but I'm Cliff wells leggers. I'm Cliff walls Lakers. Son, man, you know, I watched him for years. That's just how it is. It's gonna happen.

Scott Benner 54:26
I think sometimes you know you just you're alive long enough you gather up enough information, you know how you feel, and you know pretenses are are wasteful. As you get older, you realize that time's limited and you don't have a lot of time to apologize to everybody before you say something. So, you know, they can like it, not like it, whatever. That's all fine. But yeah,

John 54:49
even, I guess, over the last 30 days, I mean, throwing all political stuff aside, you know, the Charlie Kirk assassination really impacted me. It did hugely. It. It impacted me terribly. He was a Christian man, and obviously he debated for, I want to say, a living or whatever his movement was. I didn't know anything about him, honestly, okay, till all that happened, but I started listening to those kinds of talks, right Scott and then I listened to the how that man debated, right with folks again, forget politics. I don't care about that anyway, the way that he talked to people, interjecting fairness, but wanting to give his point, right? You know, at 61 years old, you know, I think he was 31 I almost feel like I've wasted time, by the way, sometimes I react, and really how the world reacts in, let's call it a debate situation, or any kind of, really interaction, right? What do you wish you would have done differently? Reacted different, responded different. In other words, yeah,

Scott Benner 55:54
disagreed with you. You, you wish you would have heard him out.

John 55:58
Yes, yeah, always. I think that's, you know, and I think, as I get older now, sometimes I have the propensity to talk over people, and I don't mean to Chris, reminds me that a lot think it happens and and again, you know, I'm just, I'm just trying to do better in in respect to that. And sometimes I lean on my vision loss to to that feeling. You know, it's just like you don't feel like you know, when we go out to eat, let's say me and Chris. They don't ever ask me what I want.

Unknown Speaker 56:32
They're looking at Chris.

Scott Benner 56:34
They talk to her and like you can't hear them,

Unknown Speaker 56:37
yeah, yeah, yeah.

John 56:38
I understand most people, very few, come across a blind person every day. Yeah, they just don't, they don't know how to react to them, you know. And I understand that. It's just, you know, sometimes it's like, hey, hey, hey, I'm over here.

Scott Benner 56:52
That doesn't change how you feel about it. Yeah, their misunderstanding isn't going to help you feel

John 56:57
better about it. Yeah, no, you know. I mean, there's but I mean playing blind is I'm telling you, man, it's sometimes it's just so funny. Man, I could sit here for two hours and tell you different blind jokes that have happened to me along the way. That's what I call them, blind jokes, and basically just things that have happened that are hilarious due to my vision loss. You know, there's so many stories. And you know, everybody has funny things that happen to them in life, but yeah, I've had my

Scott Benner 57:27
share. Well, John, I'll tell you, I it's not too late to start listening more to people and talking less. And you know, I mean, if you already know what you think, then telling everybody else what you think maybe isn't as valuable for you is hearing what they believe, and then, you know, see, if there's not, not a little bit of what they've got to say that you could blend into your thinking, is all and maybe not, maybe you'll throw it all away. Maybe you'll hear them and think like That's bullshit. I don't believe that, you know, and you'd be on your way, yeah. But every once in a while, I think it surprise you, somebody will say something. It'll stick on you, yeah,

John 58:02
for sure, yeah. And not, you know, that's, that's, that's kind of my things. Why I even said that? Because I know I need to listen more. I mean, you know, right? I read that and, no, sometimes I don't listen to it. We always want to try to get our point across right.

Scott Benner 58:17
I would also think that not having visual cues probably makes it difficult in a social setting too, because you don't know where to jump into the conversation, so you probably have to be a little more aggressive, right? You don't know when people are pausing all the time, and so maybe you're talking over people when you wouldn't normally if you could see their their physical cues. I mean, there's to be some of that.

John 58:37
That's 100% I mean, I don't know how many times, Scott, I've, you know, I may have a meeting in my office with some sales people or whatever, and they get ready to leave, and they've already turned and walked away. I'm standing there with my hand out, wanting to shake their hand. And, you know, we've, oh, I mean, yeah, no, I couldn't even count how many times that has happened. You know, it

Scott Benner 58:58
just makes sense. I mean, there's reason, there's some reasons, why you might end up doing that and being frustrated with how people treat you, is probably just one of them. And then this is another. There's stuff going on.

John 59:11
I mean, I, you know, and I don't get frustrated about it, you know, I'm a very humble person. Anyway, you know that most of it doesn't bother me? Okay, it really doesn't, I mean, you know, and there's a lot of technology now that, like at a restaurant, since I don't read Braille, you know, they have something called seeing AI on this iPhone, and you can take a picture of the menu, and I can listen to it with the voice over on the iPhone, and, you know, it's awesome. Figure out what I want. I'm not a picky, I'm not real picky about what I eat anyway. You know, I usually first from second.

Scott Benner 59:45
Yeah, that's pretty glorious John, that somebody could do that. You know what? I mean? Like, yeah, yeah. Especially, too, because it, you know, give you I mean, if there were carb counts listed on menus, you'd get those as well. Like, there's diabetes, reasons why you'd care. You know. The same money,

John 1:00:01
that's for sure, because it also has, like, a product, little area on it. That's product. You click on that, and you can look at the barcode, and it'll read you the carbs on, you know, container, can of whatever, that kind of stuff. So it's kind of neat, you know? So, yeah, there's a lot of stuff out there. Now, for the folks that can't see you, I

Speaker 1 1:00:22
didn't ask you, do you have kids? No, we don't have any kids. You don't

John 1:00:26
have kids? No, no, we have nephews and nieces that are grown now and then we're starting to watch their kids. So that's kind of how that rolls.

Scott Benner 1:00:36
Did you guys not want children? Or did it not

Unknown Speaker 1:00:39
work out? It

John 1:00:40
was kind of timing. Chris lost her parents when she was real, you know, pretty young, and in her 30s, early 30s. And you know,

Speaker 2 1:00:49
we got married little later. How old were you 2029?

John 1:00:54
She just said so. And then our her parents passed soon after that. And then, and, you know, which was around 2000 and then, oh, four, I lost my sight. And not at all times, just baby, just things just kept happening. I mean, you know, not things, just life, I guess, you know. And and again, you know, once our nephews came, came along, Chris's brother and his wife had had a couple of boys, and they came. They became like ours. They were here all the time. You know, we kind of have kids, but we don't. I understand

Scott Benner 1:01:29
that's lovely, by the way, you're making me think I would definitely watch a reality show of you raising a baby when you're blind. I think that would be pretty amazing. Well, I feel like you could

Unknown Speaker 1:01:39
figure it out. Doug

John 1:01:42
got the guy that trained me on the computer. He was blind as well. I don't know if I mentioned that, so that was definitely the blonde blind on that deal. But, yeah, but he was telling me he had, he have triplets, Chris, he had twins or triplets. No kidding. They were little, little, little kids. Yeah, he's blind. He was telling me one time he's like, I was I was bathing Jeremiah, or whatever the kid's name was, had the shampoo there and all this. And he said, I picked up the tube and put it in, rubbed it all in his hair, and I smelled it. He said, John. I put toothpaste in his hair, wash his hair.

Scott Benner 1:02:16
I was like, Doug, man. What are you doing? Probably bright and shiny. That's nice, though,

John 1:02:21
but I would imagine that it would been, you know, I would have demanded the kid, you know, they would have had have bells on their shoes and, you know, little things like that I had thought of over the years. That might not be beneficial bringing up kids and stuff like that. But, you know, but again, you know, those nephews, they were right there with me, and as I was testing my sugar, he would, because I have a talking meter, you know, blood glucose meter, yeah, say I wouldn't. The Lawn Boy would always say, apply blood now, you know, you know, because it was like a little robotic right voice on the sugar meter. And he would always mimic that when come running over to see how my sugar was, that kind of stuff. That's

Scott Benner 1:03:03
very nice. Have you mentioned living on with Lake? Ok? How do you say it Lake Okeechobee. Okeechobee is that? Is that the Everglades? Are you in? Are you in that part of the state? Yeah, yeah.

John 1:03:15
This is the Everglades. We're in the Glades. Basically the towns surrounding Lake Okeechobee are considered the Glades, if you will. Okay, so, yeah, Lake Okeechobee is the big, huge lake blue spot in the middle of the state there, out of the South Park, we're right between Fort Myers and West Palm Beach. You put your finger on the map, that's where our little town is. So, yeah, awesome.

Scott Benner 1:03:39
Yeah, that's it's really something. You've been there since you moved there from, from

John 1:03:43
Maryland, yeah, 1996 Yeah, when I came down here, wow, I originally relocated to the west coast in Bradenton, around the Bradenton area on the west coast of Florida in 1992 okay, but Chris and I got set up on a blind date. Yeah, that's right, a blind date. I wasn't blind then, but I knew what you meant anyway. Yeah, it was blind to me, though Chris had seen a picture, but anyway, whatever, she cheated a little bit. You bragging.

Unknown Speaker 1:04:14
I hear John, okay, yeah, man,

Scott Benner 1:04:17
how worried are we that being blind is not going to get you, but you're going to get snatched up by an alligator or a snake at some point. Is that a concern or?

John 1:04:25
No, not terribly. They stay over in the lake. Pretty much. We don't have too many right here by our house. There's a lot of canals that run up around Clewiston, you know that they bring up and down for the farming and stuff like that during different times of the years. And the Gators kind of hang out in the canals and stuff, but they don't venture out of those too much, you know, run around in people's driveways or anything. There was a black bear running around here, I don't know, six or eight years ago, running around town. People saw it in some trees and palm trees and stuff around town. Right now we have. Have a, we have a coyote epidemic here in town. They're killing a bunch of cats. They come out of the cane fields and eat up people's cats and stuff. So they're, they're trying to get rid of them.

Scott Benner 1:05:10
So my last little like, throw away question that I've been wondering the whole time is, what kind of farming goes on there?

John 1:05:15
Sugar cane. Sugar cane. Yeah, it's America's sweetest town. Is coolest in

Scott Benner 1:05:20
Florida. Say that before. Okay, all right, yeah,

John 1:05:23
that's why. If you come into Clewiston from pretty much any direction, Scott, all you will see is sugar cane fields, basically real tall, Leafy, I don't know if you wouldn't know what sugar cane looks like, but it's like a tall, leafy kind of plant that you know, it's kind of pretty when it's blowing in the wind, yeah, you know, you come down just it, just fields and fields full of it. And you've probably seen pictures of of, you know, they they burn it before they harvest it, to get all the leaves and stuff off, because the stalk is where all the cane is, where all the sugar cane stuff is. They have big fires every now and then, everybody's, yeah, a lot of people that don't know anything about it be like, Oh my god, the whole place, they're basically controlled burns, you know, that kind of thing.

Scott Benner 1:06:11
John, I actually have a meeting. I have to jump on but I want to tell you first that I don't know. Did you hear episode 1591 it was called the sweetest irony. It was Renee. Her father was a Louisiana sugar cane farmer.

John 1:06:24
I don't think I have, I have to go back and check that one I

Scott Benner 1:06:27
grew up on a on a sugar cane farm, and has type one now, yeah, I'm sorry to tell you like I do have to get to a meeting. No problem. No, no, I want to thank you. This has been really lovely, and I appreciate you. I know it was, you know, more effort for you to come on the podcast than it is for a lot of people. So thank you. Thanks. Thanks to your wife, your lovely wife, for setting things up with you and everything as well. Oh, yeah,

John 1:06:51
no, I appreciate your time. And you know, just encourage people you know that are listening. If you you know, if you get any complications from this disease is not the end of the world, and just trust things will go your way and keep pushing on, and everybody keep that trigger under control. It's really important.

Scott Benner 1:07:10
John, I appreciate your message and sharing what went right and what went wrong for you, too. I think it's really valuable for people to hear

Unknown Speaker 1:07:17
yes, sir, no, for sure.

Scott Benner 1:07:18
I heard Chris the back, by the way, I heard Chris in the background. She's not wrong. You do have a passion for this that is commendable, and I really do hope people heard it like the way, the way that I did today. So thank

John 1:07:29
you, all right, thank you, Scott, and I appreciate your podcast and everything you're doing, you're changing lives, man. Thank you very much.

Scott Benner 1:07:37
Awesome. You're very kind. Hold on one second for me. Okay, you

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