Scott Benner 9/15/25 Scott Benner 9/15/25

#1628 A River in Egypt - Part 2

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Patty, living with type 1 diabetes since 1987, reflects on denial, resilience, and decades of management—sharing how acceptance, support, and learning transformed her journey. Part 2 of 2.

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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.

Patty 0:00
Juicebox podcast is good for you. Whether your diabetes is one or two, take some time to listen in. You'll gain so much knowledge, and that's a win.

Scott Benner 0:14
Welcome back, friends. You are listening to the Juicebox podcast. You

This is part two of a two part episode. Go look at the title if you don't recognize it. You haven't heard part one yet. It's probably the episode right before this in your podcast player, you check out my algorithm pumping series to help you make sense of automated insulin delivery systems like Omnipod five loop, Medtronic, 780, G twist tandem control IQ and much more. Each episode will dive into the setup features and real world usage tips that can transform your daily type one diabetes management. We cut through the jargon, share personal experiences and show you how these algorithms can simplify and streamline your care. If you're curious about automated insulin pumping, go find the algorithm pumping series in the Juicebox podcast, easiest way. Juicebox podcast.com, and go up into the menu, click on series and it'll be right there. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin you

I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year where 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 the episode you're about to listen to is sponsored by tandem Moby, the impressively small insulin pump. Tandem Moby features tandems newest algorithm control, iq plus technology. It's designed for greater discretion, more freedom and improve time and range. Learn more and get started today at tandem diabetes.com/juicebox today's podcast is sponsored by us, med, us, med.com/juicebox, you can get your diabetes supplies from the same place that we do. And I'm talking about Dexcom, libre, Omnipod, tandem and so much more. Usmed.com/juicebox, or call, 888-721-1514, and I said, So my feeling about this person is, is that they they're just here for the money, and that was my expectation and but I said, again, never spoke to them. Don't know them. Haven't written to them. I don't know. I couldn't say for sure, it's my vibe. And the person said, I appreciate you sharing that with me. It's also my vibe. And then told me a number of kind of things that they had been dealing with that were not pleasant and underhanded and etc, and that they had just come out of a meeting where they said, Hey, we think this person does not have the best interest of people with diabetes in their heart. We think that they just see it as fish in a barrel. They have a skill. They know how

Patty 3:37
to do it, yeah, as a money maker. And that's, you know, in fairness,

Scott Benner 3:41
the next thing the person said was, like, Listen, what they do is good. Like, it works, and people like it, et cetera, but we've decided we don't want to be a party to it. And so I was like, Okay, great. Like, it was weird conversation to be in, but it reminded me, because then afterwards, this person said, Scott, we know you're out there trying to help people, and that makes this feel better for us. Like, yes, it's a business, and yes, we're trying to get people to look at our thing, but we like that they're finding our thing and being supported by you and that community that you've built on Facebook and and and and, you know, and they the end of that conversation was, we think you've taken a number of valuable things and brought them together for people, and we're watching people be better off for it. And if we're going to spend money in this space to try to get people to see our thing, we'd like it to be in places like this. Not that I'm the only one doing it with people who are well intentioned, you know, at the start, and I was like, oh, yeah, that's good. I'm glad you're, you're thinking of putting your money there, so it was pretty much it, yeah,

Patty 4:48
yeah. I'm glad, I'm glad that you know, yeah, because you know, and it's, you've talked about it, and people have talked about it on the podcast, about. You know the insurance companies, and you know the bottom line for them is the money. And you know, these are people's lives that they're playing with. And, no, it's

Scott Benner 5:15
always been my, I'm going to ask you about your about your life, obviously, in a second, but it's always been my intention that, like, Look, somebody is out there trying to they're marketing right for pumps and CGM and insulin, all the things they're trying to sell. And that's going to happen one way or the other, if I can take some of that money that they're planning on spending to reach people's ears and use it, and the way I used it ends with you coming on and saying what you said about finding the podcast and helping yourself, then I found a way to make something good out of a thing that was going to happen one way or the other. And, you know, some, you know, high minded people might be well, just do it for free. And, you know, that's sweet, but you don't know what it takes to do this. There's a small army of of time and ideas and that, you know, effort. Oh,

Patty 6:01
no, you have to value what you're doing. And you know, money is the way that. You know the world works.

Scott Benner 6:10
If you could pay me in food and heat and gasoline, I'd be fine too. Yeah, I don't care how it happens. I just

Patty 6:16
right food, especially, yeah, nowadays, and I gotta stay

Scott Benner 6:19
alive too. And my kids got diabetes, which, by the way, like, when you, if you think it like, I get anything for free, I don't like, that's not how this works, you know, yeah. So no, anyway, so you Yeah, I appreciate it. So here you are. You're growing up. We went a long way around. But, oh my, yeah, you are, like, in your 30s, 40s, and then you've had diabetes for like 10 years, then you get cancer, yeah. What happened

Patty 6:46
there? Crazy? Huh? Yeah, oh, that. That was really crazy. I actually, I had just gone to my first education with a Medtronic pump, and that was back in 99 and I was going to start pumping, and then I go to the doctor because I had a little bump on my left breast. And I was like, Ah, it's, here's the denial again. It's a mosquito bite, honey. Like, well, you know, it's not really, it's not going away. I think I'm going to go and, well, sure enough, yes, it was a breast cancer. I was 42 I went back to my Endo, and I'm like, I had the pump, you know, I paid a lot, even though we had good insurance. And I said, I can't do this. I I just have to stay with what I know, you know, MDI. And in a way, I think it worked out well for me, because with the treatments and the steroids that were given, you know, to me, You know what steroids do to people with, well, to everybody, but especially people with type one, because I was on long acting and I wasn't eating anything because I was so nauseous from the poison that was put inside My body to kill that little, tiny mosquito bite was killing everything else. My blood sugars kind of

Scott Benner 8:27
were okay, yeah, the MDI helped you get through it. You think? I think

Patty 8:31
it did. You know, because I couldn't eat after my treatments, I would go home, I would take some Ativan and sleep for two days, and by the second day, I would wake up and kind of get myself going again. So because I was on the long acting I think, you know, in my crazy mind, it kind of kept me from, you know, going too low or going too high because I wasn't eating well, I just was,

Scott Benner 9:05
yeah. I mean, that would have been your first pump, yeah. So, I mean, probably not a great time to be learning, like you knew how to do it. You knew how to do it with MDI at that point. So, yeah, right, right, right. Maybe not a great time to start something slap it on, yeah, yeah, yeah. That would be like, if you slapped on a new Omnipod five and then ended up in the hospital later that day for two weeks, which is just, which is, by the way, it's just a message to one person who's listening, and it actually ended up working out really well for them. But in the moment, you're like, oh no. Like, you know, gosh, I just, I, this is the day I'm switching. And then, you know, 12 hours later, you don't realize it, and here you go into another at least. Yeah, listen, I wouldn't made a big switch at that point. Did you eventually get a pump or you still?

Patty 9:50
MDI, no, no, no, I'm on tea. Slim, no, I What happened was, I had that point. I'm sorry, yeah, after, you know, I was like, Okay. Pump. I had this pump brand new that I had gotten just before my breast cancer diagnosis, and it was in the box, and I just kept looking at it and going, now, you know, I'm just going to keep doing MDI, MDI. But then I was getting a lot of lows at night, the endo said, you know, I think if you start on the pump, it might even things out just a little bit better. So by then, that pump had gone out of warranty. So it was, like, four years later, and I still hadn't, because I am kind of stubborn, like I said,

Scott Benner 10:38
we've mentioned it, yeah, yes,

Patty 10:42
and so then I put in and I got a Medtronic pump, which I was on Medtronic for, gosh, probably 18 years different Medtronic pumps. And then I was so disgusted with the CGM and everything, I decided with in my endos office, he brought up I was getting ready to leave my endo after a long time, because I was the patient who, you know, my a one, Cs were pretty Good, like, you know, seven, maybe I got a 6972, so I didn't have I didn't give him much trouble. And so after all those years, he was like, Hello, how are you? Here's your graph. You're looking good. And I'd have questions, but he'd be walking them backwards out the door. And I was like, this isn't cool. Wait a minute. I got a, you know, got a question. I was looking to change, and I really was going to change, but he brought on an amazing nurse practitioner who really listens, oh, my God, and you're a good listener. And she listened to me, and I was so happy that he brought her on, and she said, Why don't you try this tandem pump? You know, it's, I think it, I think you might like it. And so I did, but again, I strapped it on. You know, I got the basic education at the office. I, I didn't do my own due diligence, okay? Because here again, you know, it's like, oh, life goes on. I I'm busy, you know what? I guess I'm not a detail person, you know, until it smacks me really hard upside the head, and just like to get going. Yeah, and my my husband, was like, I don't think you should have tried. You should have changed to this pump, because I didn't know all the good things about it. I was just thinking it was like, you know the pump, I had the Medtronic, and it wasn't so anyway, through listening to you and doing, you know, a lot of my own homework now, you know, I really like it, except that, as I said, the infusion sites are becoming less and less viable for me after all these years, and, you know, I'm just wondering, like, do you when you hear that from other people, what do other people, you know, go off the pump and then, you know, start doing, you know, different things, like a Pres.

Scott Benner 13:39
Well, yeah, I mean, what do you what are you talking about, about your sites? Or, like, are they just not working any longer, or you just all beat up? Or, yeah,

Patty 13:46
you know, like, it takes a couple of tries. I'm on the true steel. The other day, I had to take it out and put it which I love, that feature, you know, take it out, put it in a couple of different spots until I could see that it was working, that I was getting the insulin that I needed. And so it is, I think, you know that I have a lot of scar tissue, and you know,

Scott Benner 14:15
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Patty 16:35
Yeah, exactly. And it's like, okay, well, I tried my arms. My arms are so skinny, you know, that's where I put my Dexcom. I'm still on the g6 which I love. I know the g7 smaller, but, you know, I'm stubborn. I don't want to change. Like, where the hell I have really small boobs and and, like, I see women that put the infusion sets in their boobs, and I'm like, Oh, that would not work at all. And especially, having had breast cancer,

Speaker 1 17:04
I'm running out of spaces,

Patty 17:08
you know. And I'm thinking, you know, as I'm hearing about a pres and, you know, I don't know it sounds, sounds good. So

Scott Benner 17:20
Well, there's plenty of people who use it to love it. And, yeah, I don't know if it's in in concert with their other insulin, that they think of it as, as really well, or if people are using it just with a, you know, a basal injection and and then a pres for meals and for highs, I don't know. Like, I've, I've talked to people have used it, really enjoy it. Still use it. I've talked to people used it. One guy just told me last week I got that cough, and I was like, oh, no, I'm good. I need to stop, you know. Like, so I talked to somebody who said that, you know, I know how to inhale it with, you know. So it kind of goes in in a way that, you know, that won't happen. A lot of people have theories about it and everything. I mean, could it hurt to try or to talk to somebody about it, just to but, I mean, the point is, is you're not going to stop putting your pump in anyway, right? Like you're going to use it in concert with it. So that's not going to really make up a difference with

Patty 18:15
maybe not, yeah, maybe not. Maybe I would just, you know, get off the pump take a little break, which kind of thinking, you know, I

Scott Benner 18:24
wonder if that would help, or if the scar tissues, if it's too far along, or if a break would help. Yeah, I don't know. Have you ever tried giving one place a break to see if it got better? Like, you know what I mean? Just like, I know you're already low on spot, yeah?

Patty 18:39
Like, I haven't used my stomach in years and years, and I've, you know, I've tried, and it just doesn't seem to work. It absorbs for like a day, you know, with the true steel, which, you know, you got to change it out every two days. And here, you know, it's exhaust this. So back. Okay, I'm, I'm sorry I'm going all over the place, but what you were saying about Arden and you know, yeah, you've got all the the managerial art down the amount of time and energy that some days it takes to just get the insulin going in and absorbing finding the right spot. When I hit a right spot, I'm like, yeah. Finally, I also do a lot of yoga. And my husband's theory is, you know, I'm stretching the areas and the the infusion sets getting moved around in my body, and, you know, all these things I don't know, but you're tired of thinking about it just seems to take a lot more work now than it did. You know? I. Years ago, you know, when I, when I was working full time running the school, you know, it was like,

Scott Benner 20:07
oh, you know, you were younger, and your body hadn't been abused as much.

Patty 20:12
That's the other thing, right? Yeah, yeah, being younger and having more energy and being able to tolerate like, now when, when my blood sugar is over, like, 161 70, ah, yeah, it just makes, makes me upset. You know, it's like, Oh, I gotta get that down. You feel bad

Scott Benner 20:35
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Patty 21:45
yeah, it just makes, makes me tired, you know, and I'd much rather treat a low than chase a high. That's you in quotes, because that was also another thing I think I I also was afraid of giving myself too much insulin, and now I'm not, you know, and I don't overdo it. You give yourself what you need. Yeah, here's the other thing, listening to you, getting my knowledge up to date on the device that I'm using my last day 1c, and I know it's just a number, and my everything, my variable is low,

Scott Benner 22:32
six. Oh, no, that's wonderful. Good for you. Congratulations. Yeah, yeah,

Patty 22:36
I'm, you know, I'm real happy about it, if it goes a few points up above, but, but I don't think I'll ever, and I hope I won't, you know, go back up to seven, you know, just with this technology, which also can prove to be anxiety ridden. How so? Oh, how So, all the alarms I have everything shut to vibrate. I I don't even my phone. I don't like having dings going off. So I have turned so many alarms off because I have developed anxiety over the years, you know, with managing this, I have been depressed. I been to see therapist, you know, to kind of help. I all okay. Here's the other thing. I was also my mother's caregiver in our home for five years. My mom just passed at the age of 97 and a half. I'm sorry, thank you, but she was ready, and she She was a beautiful mama, but just having that also, you know, extra, it was a lot, and it was a lot. I was in a real bad place, like seven months, seven months ago, eight months ago, and I was like, you know, I'm going to enroll in that blue circle health, because I need to talk to other people that have diabetes, you know, and and again, such a fabulous resource, awesome. Oh, I'm glad it helped. And, yeah, and unfortunately, I I missed a lot of opportunities because of the care that I had to be involved with towards the end. But the other thing is, you can sign up again after a year, okay, if you want to go through the program again. I mean, come on, can

Scott Benner 24:54
I ask you, at your age, was losing a parent any different than you imagined it was? Have been at a different age, like, did it matter that she lived that long and that you're in your 70s? Was it just as sad as it would have been if you were 3040, 50? Do you think I

Patty 25:09
think it was sadder? I believe that, my gosh, not many 70 year olds still have their mommy around. Yeah, all her grandchildren had her, you know, they're all in their 30s. They had their grandma, okay, and my dad lived to almost 102

Scott Benner 25:28
Jesus, yeah. Did you still utilize them like parents? Like, did you like, even in your later years? Can you think of a time in your 60s that you went to your parents for advice, or did it change the relationship?

Patty 25:44
Yeah, no, just the cover, no more of a comfort, no, but, but here's the kind of crazy thing. We moved in 1989 from New York to Florida to be close to my parents, who were like in their late 50s, early, you know, late 60s, we wanted to make sure we could be close by when they needed our help, right? They were very vibrant up until their 80s. 90s, both my parents, I get cancer. Oh, yeah, they move into my house to help you, to help me with our two sons, my husband, you know, everything and so, you know, looking back, yes, we we had made so many great memories with them, and our Kids had them for, you know, so long. And I believe that having them for as long as we did made it even harder, you know. I mean, she is so close to us, in in our hearts and in, you know, every memory you know, I understand, yeah, gosh, I'm sorry. Well, it's okay. She lived a good, long life. She did and she was ready. She kept telling us the last month, I'm done.

Scott Benner 27:18
I've seen the prices, right enough, this is over.

Patty 27:20
Yeah, Turner, classic, that was her favorite classic movies. Yeah,

Scott Benner 27:25
that's something, yeah. Well, God bless her. Okay, that's really lovely. And I mean, here you are probably thinking, I got 30 more years.

Patty 27:33
Oh, no, I do not want to live. No, I No, no, no, no,

Scott Benner 27:40
tell me, if you could put a time on it, where's the sweet spot? I'm okay,

Patty 27:45
you know. Well, maybe another year or two, hey, I'm okay, you know? I mean, I say it, you know, I am a very faithful person. I'm have a very strong relationship with God, with Jesus and but I'm also a realist, and practically speaking, you know, I don't want to be suffering. I work really hard to to keep myself healthy. I don't want to go. I don't want to have some okay, my husband, he he don't know. I mean, he does know a bit about my care with the pump, and

Scott Benner 28:29
he doesn't really understand what it's like. No,

Patty 28:33
no. You know it's like. It takes a lot to keep this body going.

Scott Benner 28:39
So you're saying when your health wanes, you think that's the end of life, like for you, like you. You're not looking to suffer to stay alive. Oh,

Patty 28:48
I'm not. I'm not. It's no, no, there's not. No, there's wouldn't be a quality. I don't want somebody having to to take care of me and change the diaper or whatever. God forbid. Yeah. So I am practical about that even, you know, like some people say, might say, oh, that's awful. You know how you know that's how you feel, yeah, it's how, it's how I feel, and it's okay, it's okay. I've lived a good life. I have beautiful family, most amazing friends. I love my yoga. I love teaching yoga. It has, it has also really helped with my manage, management of all the, yeah, the mental, emotional stuff, okay, comes up with the diabetes, you know, being able to meditate come back to your breathing, to move. And, you know, move with your breath. And you know, I'm not saying I stand on my head, but especially at 70. But the practice. Is a very deeply spiritual practice, and it's very helpful for people with chronic illnesses to be able to just kind of set that aside for half an hour and just be present in your body and learn how to use your breath to bring down the anxiety that comes with having to, you know, having this on you, 24 hours a day, seven days a week for the rest of your life, to try to be a major organ. You know, it's like, oh, today, I wasn't I didn't really act that good as a pancreas. I missed that, or I did, you know, I was tired, or whatever. I mean. What other organ Are you in charge of? Okay, yeah, and have to be in charge of for the rest of your life. I Is there one like, you know, the heart they took hook you up to a heart monitor, but you're not going to go in there and start pumping your own heart. Or, you know,

Scott Benner 31:09
you know, I used to say to people that try to imagine that breathing was a thing you had to think about in, out, in, or your heart pumping, that it was your job to that's what it felt like raising Arden, that it was my job to say, breathe in, breathe out, breathe in, breathe out. And if I didn't, if I, if I wasn't focused on it like that, that it might not happen. That was kind of one of the early that's

Patty 31:33
overwhelming, yeah, for Oh my god. When I was running the preschool, a woman came in frantic. She had had her two year old at another school, and he had been diagnosed with type one. He almost died this poor kid. Oh my gosh. And the people at the preschool, they we can't, we can't, you know, help him. You know, we've got 20 other three year olds, you know, it's going to take too much, yeah, and somehow or other, she found us. And I was, like, so thankful that she did. I mean it, he was newly diagnosed. He was all set up with his Omnipod is, you know, he had everything hooked up, and she was right there, you know, like sharing from afar. And I just said to her, we got this, don't worry. Yeah, he's in good hands. And he was, and I

Scott Benner 32:41
didn't ask you a question earlier. I'm sorry, yeah, you said you adopted, right? Yes, your heads are one

Patty 32:50
two boys, men now from South Korea back in 1986 and 1988

Scott Benner 33:01
was that a reason? Could you not have children? Or did you just want to adopt? Or I

Patty 33:05
couldn't. No, I couldn't. We had been trying, you know, which was fun, for seven years. And then I had a procedure done, and, and the doctor said, Well, you'll have a 30% chance, you know, of getting pregnant and and my husband and I, you know, we both come from fairly large families. I'm the oldest of five, he's the sixth of seven. We and we love kids, and we wanted kids, and we were like, I can't wait any longer. Let's just take this into our own hands. And we adopted two beautiful babies from South Korea who are now almost 39 and 37 years old.

Scott Benner 33:51
Wow, that's That's wonderful. Did you keep trying and it just never happened?

Patty 33:56
Yeah, yeah. Kept trying. Never happened. Oh, yeah. Do

Scott Benner 33:59
you think you have is it? Do you do you have any idea where the problem lies? Do you have PCOS?

Patty 34:05
I had a lot of endometriosis. My fallopian tubes were blocked, you know, all sorts of scar tissue and there. So, yeah, you know, it just it. I mean, it just wasn't going to happen, right? So, and that's fine, because we lucked out two brilliant men, you know, hard working, yeah, good, good parts, you know. And we're very proud of them.

Scott Benner 34:35
That's lovely. Are they, yeah, are they local? Do you get to see them? Or are they

Patty 34:40
spreading? Well, actually, our younger son just stopped by Monday. He, he lives in Gainesville. They, they both graduated from University of Central Florida in Orlando. Our oldest son, he still lives in Orlando and works in. Orlando and our younger son moved from Orlando to Gainesville, which is in the middle of the state, and he's been there about 11 years. And he was in he was up in Jupiter, Florida, and he came down to visit us in Point Beach. Did they have their own families? Not yet, not yet, not yet, no. So we'll see.

Scott Benner 35:30
Yeah, that's something else. Well, your your life's been something it's really, really great story.

Patty 35:36
Everybody has a story, right? Scott, I believe you've heard a lot of them,

Scott Benner 35:40
I'd like to hear some more. I'd like to hear some more, because I think the more I hear, the more I understand about myself and everybody else. And

Patty 35:49
that's so true. Yeah, that is so so true.

Scott Benner 35:53
You guys are helping me a lot, so I appreciate it. You know, it's a weird journey that we're that we're all on together. Interesting, how new people come in and out of it all the time. Like, would you say you started listening a couple

Patty 36:07
years ago? Yeah, probably just like two years ago. Wow,

Scott Benner 36:11
it's had that much impact on you already. And I was making it for nine years before that,

Patty 36:15
right? Imagine, and I know, no, I mean, and I, and it's so funny when I, when I listen to the older ones, it's like, wow, he has really, you know, you just get good at get better and better. I mean, you were good at it when you started, you know, because you were coming from that place of really wanting to help other people. So everybody gets that. But then the longer you've been doing it, just like any you know, just like a yoga practice, people think they're gonna, you know, start they never did anything. I can't touch my toes, you know. And they think the first time they go to a class, they're going to do that. I'm like, No, it's a practice. You got to do it every day.

Speaker 1 36:56
A lot of lessons in that about patients, yeah, yeah, you know. So I

Scott Benner 37:00
even wonder, if I went back, how well I do listening to myself. I've never, I've never really, I've never tried it, but

Patty 37:07
you don't have enough time. I would imagine

Scott Benner 37:09
also again, talking about being insane, if I started listening to my own podcast, that'd be crazy as well. But no, I wonder how annoyed I'd be by things I used to do or didn't do or, you know, right kind of stuff, yeah, yeah. Also, I'm always worried that I'll look back and think I was better at it back then. So anyway, Oh, that's funny, yeah. So Patty, I just want to thank you. This was really terrific. I appreciate you taking the time it can I ask you the last question, what made you want to do this?

Patty 37:42
I wanted to share my story because I love listening to you interview the professionals in the field. You know the Pro Tip series, you know the bold beginnings, all of that. But when I hear other people's stories, and, you know, they just inspire me. And I, I always learn something. And so I thought, well, I'll give it a try. I was really excited. In fact, my blood sugar is a little bit higher because I, I just have been excited to meet you and talk to you, so that's why. But I also, you know, I've been a preschool teacher for many, many years, and I, I love to sing, and I love to make up songs, so we're of the same kind of peer group. Did you used to watch Saturday Night Live? Of course, yeah. So one of the comedians on there, I forget what his name is, but he used to come on and say, I wrote a song about it. Want to hear it. Here go. So here's my song for you.

Scott Benner 38:57
You have a song for me? Oh, hold on a second. I thought you. I thought you were gonna say I was a preschool teacher, so I was ready to handle you, Scott, but this is different.

Patty 39:05
Well, that too kind of but this is, it's a very short song. It's very short. And here it goes. Juicebox podcast is good for you, whether your diabetes is one or two. Take some time to listen in. You'll gain so much knowledge, and that's a win.

Scott Benner 39:30
Oh, my God, that's wonderful. Thank you. Listen, Rob. You got to pluck that out and play it at the beginning of the episode, like before, before anything happens before I even say hey, like, Hello friends and welcome back to the Juicebox podcast. Play, play. Patty song first.

Patty 39:48
Oh, wow, thank you. I tell you, I wrote a song about it. Just last night. I was like, I gotta write him a little song.

Scott Benner 39:56
Awesome. Great patty. You could have been on Lawrence wealth back in. Day for sure.

Patty 40:03
Oh, my God, he's laughing. His grandmother loved Lawrence. We used to have to sit there every Saturday night and the one and the two,

Scott Benner 40:13
no kidding us too, like they drag his wife out. I was like, Oh, here we go. Yeah, no one knows what we're talking about right now, but, yeah, I suffered through that too. I just sit on my my grandmother's Davenport and shut my mouth and watch Lauren's walk. There he goes. A lot of old there's a lot of old words I'll throw right together for you. What else did she used to have? What she used to call the ottoman. She called it a passick. Maybe,

Patty 40:41
yes, a hastic, yes, we had one. Yeah, we had one.

Scott Benner 40:45
I know a lot of words, yeah, oh, that's true. How old are you? I turned 54 last weekend.

Patty 40:52
Oh, you're young. Come on, 54

Scott Benner 40:55
I just remember a lot of that stuff. That's all

Patty 40:58
Wow, when you were a baby, when you were watching that? Yeah,

Scott Benner 41:01
no kidding, I was, but I remember it because it was painful. And

Patty 41:05
so, Hey, Scott, can I just throw one more thing in there? I'm sorry. Go ahead, all this stuff. Jordan, the the nurse, head on, yeah, yeah. Ah, you like that. I I'm so glad that I listened to those episodes about the ER, because honestly, I I have, really, I haven't gone, and it's the one thing I like. I should have gone a couple of times. I know I was in DKA and but I'm so stubborn. I stayed home and I treated myself when I really should have gone to the ER, but I have such well, and also having, you know, gone through breast cancer. I really don't care for doctors and all of that stuff. But anyway, he just reassured me. You know it was, it was reassuring that, Okay, you go in there, and I do, I have all my settings and everything down and all and so it made me feel a whole lot better hearing what he had to say about, yeah, yeah, going to the hospital so, and I made my husband listen to that one too. So

Scott Benner 42:23
we're hoping to have Jordan back. He it's a little on him to come up with topics, yeah, stuff that he's passionate about, wanting to talk about, but when he has time, he just had his I don't think I'm, I think I'm, I think Jordan just had his fourth baby recently. He didn't, I believe,

Speaker 1 42:38
I believe his wife a lot of kids. I remember I was like, Wow. I believe his wife

Scott Benner 42:42
had the baby. But like, you know, yeah, he was, yeah, yeah. He might be busy at the moment, is what I'm

Patty 42:48
thinking. I think so, yeah, I think so, but, but he was good. And then you had another gal who, she's probably around my age, but she, she was in she was a psychologist, I think I can't, Sandy. Remember Sandy? Yeah, she was awesome as well. I really liked, I really liked listening to her, yeah, yeah, like I said, I, I really enjoy listening to I love hearing people's stories. And we I

Scott Benner 43:17
appreciate that. Let me tell you. I what I appreciate about it is that you in your 70s can hear somebody in their 60s or 50s, 40s, 30s, 20s, you know, down to little kids talk about diabetes and that it somehow is valuable for everybody. Like, I don't think, I can't think of another scenario where it would be valuable for a 70 year old to listen to a 20 year old. Do you know what I mean, like, or vice versa, or whatever, but there's certainly, I, there's certainly as much value in your story for somebody in their 30s as their 20s, 30s, 50s, etc. Like I, this is a very unique situation where it's really, really a good idea to listen to, yeah, all the different, you know, again, spectrums of people and ages who have had lived through type

Patty 44:04
one. So

Scott Benner 44:07
it's just really, yeah, it's great. Okay, well, I'll thank you very much for doing this, and thank

Patty 44:12
you was delightful. I'm so glad we got a chance to chat. You be well and enjoy your vacation.

Scott Benner 44:19
Thank you. And you beat me to calling you delightful. So thank you. Hold on one second for me. Okay, okay,

I'd like to thank the ever since 365 for sponsoring this episode of The Juicebox podcast, and remind you that if you want the only sensor that gets inserted once a year and not every 14 days. You want the ever since CGM, ever since cgm.com/juicebox one year, one CGM, the conversation you just enjoyed was brought to you by us. Med, us. Med comm slash juice box, or call, 888-721-1514, get started today and get your supplies from us. Med head now to tandem diabetes.com/juice box and check out today's sponsor tandem diabetes care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the tandem Moby system.

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Scott Benner 9/12/25 Scott Benner 9/12/25

#1626 A River in Egypt - Part 1

Patty, living with type 1 diabetes since 1987, reflects on denial, resilience, and decades of management—sharing how acceptance, support, and learning transformed her journey. Part 1 of 2.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome back to another episode of The Juicebox podcast.

Patty 0:13
Hi Scott. My name is Patty D, and I have had type one diabetes since 1987 diagnosed in 87 but I think I'd had it before then. If

Scott Benner 0:31
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. 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 of The Juicebox podcast is sponsored by us Med, US med.com/juicebox, or call 888-721-1514, get your supplies the same way we do from us. Med, 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 Hi Scott.

Patty 1:52
My name is Patty D, and I have had type one diabetes since 1987 diagnosed in 87

but I think I'd had it before then. No kidding. Well, how old are you now?

I'm old. Well, I mean, in years, I'm going to be 71 next month,

Scott Benner 2:18
71 Well, listen, you're calling yourself old. I don't know if you heard today's episode where I was making a Tennessee tuxedo reference, making a cartoon reference from the 60s.

Patty 2:29
All right, all right. Well, we're, we're kind of on the same page. I would imagine I

Scott Benner 2:34
might have been there with you, yeah. Well, so you're, you've had diabetes since 87 diagnosed. But you do? You feel like it was before that? What do you mean by

Patty 2:44
that? Well, I there were signs like a year or so prior. I I remember specifically one New Year's Eve, we went out with some friends, and we're waiting way too long to get our meals. And I remember like I was seeing black spots in front of my eyes and and, you know, hey, I was, what, 3031, years old. And I just thought, ah, you know, it's late. And didn't give much more thought to it, but, but, you know, there were other things, but that one in particular, I was thinking last night. So I think, you know, it was starting. It was starting sooner, the year prior to when I finally took my stubborn self to the doctor, who my regular GP, and I had all the classic symptoms, you name them. I had them, peeing, constantly, drinking tons of water, really tired, oh yeah, and oh, I could eat everything, but I kept losing weight, and I've always been thin, and so in my crazy mind, I'm chalking it up to we had just adopted our first son, so, you know, a new mom. And I was like, Oh, it's just because I'm tired. I'm a new mom, but I'd be reading to him after lunch, and I'd fall asleep, and here's a baby, really, yeah, so I just kept ignoring it, ignoring it until I couldn't ignore it anymore. I had a raging infection. You know? Where down there? Yeah. And I was like, Okay, I can't live this way. I'm going to go to my GP. It's 1987 and I was thinking about this as well. He did a urine sample, and. And he comes back and he says, Did you just have like, a sugar donut and put your finger in the specimen? And I was like, No. He said, I'm going to do it again. And he did it again. And he he came back and he said, You have type one diabetes. Now I'm 30 what was I 32 then, I guess, yeah. And, you know, just that reference as well. Why? You know, I mean, here I'm an adult. Most doctors back then would say, Oh, you have type two, right?

He knew I hated him. I don't have type one.

I was so mad, angry. I was like, I'm not taking needle shots. Forget about it. So the poor guy, he was like, Oh well, you know, all right, we'll, we'll try, you know, oral medications,

Scott Benner 6:03
but your pushback made him change his diagnosis.

Patty 6:07
He was like, Well, if you don't want to take insulin, try this. I don't think he changed his diagnosis. He was like, hey, you know you have type one. You scared him. I Okay. I'm a very peaceable person. I'm a yoga teacher. I ran a preschool for 23 years, but I am stubborn, oh, and also denial. Think just a river. I think it's the strongest emotion I'd always been athletic. I ate well, I was like, How dare this guy tell me that I have type one diabetes, which, honestly I didn't know too much about. So

Scott Benner 6:53
you didn't have any backgrounds in it, or actual feelings about what that meant. You just didn't like that somebody told you had an issue. Do you think, yeah,

Patty 7:03
well, yeah, no, yes, and that I was gonna have to take insulin shots, okay, for the rest of my life,

Scott Benner 7:09
he would have told you had type one diabetes and had to take a pill. You think that would have been better for you? Think it was the injection part?

Patty 7:16
No, I think I was just pissed off that my body wasn't working, yeah, the way I thought it should be, yeah, the way, you know, I mean, I was grief stricken, and I gotta tell you, it carried through for many years, because I'm stubborn, you know. And fast forward a couple of months, and I'm, I mean, I looked like a skeleton, right? And my baby was getting chubbier and chubby. I thought I was gonna, yeah, I was gonna die. Where you weren't taking insulin then, right? I wasn't, no, I was still like, well,

Scott Benner 7:54
then Patty, you, you were gonna die. I was gonna

Patty 7:57
die. And, you know, really, it's remarkable that I didn't end up in the hospital, because that's how stubborn I am, you know, and tough time a tough I'm a tough Italian. My husband's job got trained, he got transferred to London, so we were moving to London, and he was already over in London, and we went about three months later. And as well, I went to the doctor before I left, and the same doctor who I scared and who still was like, you know, you really have type one diabetes.

Scott Benner 8:37
You're gonna die, lady, yeah,

Patty 8:41
stubborn idiot. He was probably thinking, probably wanted to smack me upside my head. He said, Listen, do me a favor when you get over to England, here's the card for the British Diabetes Association, and if you need, please get in touch with them. I got on the plane, we had a JFK, my cousins took my son and I to the airport, and they were really worried. Everybody was worried about me, sure, you know, but, but they're afraid of me, you know,

Scott Benner 9:15
like Skeletor,

Patty 9:17
yeah? Well, I mean, no, honestly, yeah, nobody like said the patty, you know, no, they were really kind of afraid. Because I was like, I'm gonna take care of this. Don't you worry.

Scott Benner 9:28
Yeah, Patty, stop for a second. Was that your vibe in general? Do you think people were scared of you in general? Not normally. So you weren't like a person who lured it around and and, Oh no, not, like, just on this

Patty 9:41
issue, on this particular Well, you gotta ask my husband on other issues, but this one, really, yeah,

Scott Benner 9:49
I take him out of it because I assume he has a different story. But I'm saying, like, generally speaking, throughout your life, you didn't see yourself as, like, bullish or or somebody that people kind of kept arms. Distance with Oh God no, no, no, okay.

Patty 10:03
The the opposite, really, is

Scott Benner 10:05
there any hindsight that tells you that the high blood sugar had you Cloudy and not thinking correctly?

Patty 10:11
Oh, sure, yeah, right. Well, absolutely, I was cuckoo, yeah, out of your mind at that point, right? Yeah, yeah, yeah, yeah, but I didn't know, Scott, you know. I mean, what the hell did I know? I didn't know. I knew nothing. And but when we arrived in London, Heathrow Airport, we're getting off the plane, and I fell into my husband's arms and said, I gotta go. I gotta get me some insulin, or I'm gonna die. You know, it then I just, yeah, I mean, oh, so thank God. We went. They got us in, and he gave me a vial of long acting and a couple of syringes, he might have said, the doctor there, maybe you want to come back and, you know, we can do some more education or whatever. But hey, my life was going on. I was going to be all right, just giving myself this injection and going on my merry little way. And, I mean, it really is remarkable that I I never ended up in the hospital, because

I would,

well, you know, long acting back in those days, the peaks and the valleys and all that, I knew nothing about that either, but I get my son in his stroller and we'd go walking all through London. It was a beautiful spring, and I always had cookies for them, or biscuits, as they call them over there. And I'd be walking, and all of a sudden, oh, I'm starting to slow down. What the hell I got to pull over? I sat on a stoop and and Mark, my son, very peaceable. I said, Okay, Mark, we're gonna have our snack now. Here's one cookie for you, 23 for mommy.

Scott Benner 12:13
Eat your slow buddy, because Mommy's getting the rest. He talked about, you know, the denial and that it lasted for years, you said, so kind of explain that to me, like, how long did it last? And how did it impact you? How'd you find your way through

Patty 12:29
it? Oh, God, by the grace of God, I guess, you know, well, I never did go for education over in England. And I, you know, I was young, I was healthy. And so I guess that alone kind of carried me through, and I could ignore things. And then when we got back to the States, we were living on Long Island, and I went to Stony Brook hospital, and I, I found a good endo there, and he, I don't know, you know, did he tell me things that I didn't hear? Probably, but I guess my management got a little better on MDI, you know. So then, you know, I was doing long acting, which still was messed up as far as the peaks and the valleys and lows overnight, and then, you know, giving a Bolus of regular for each meals. And I did that for years and years. I didn't tell a lot of, you know, a lot of people, because, you know, it was my thing. My husband, he was scared of me, you know? And so he was like, Okay, you got it, it's okay. But, you know, everybody around me, like, when I'd go low or high, they'd be like, oh, boy, is

Scott Benner 13:51
it interesting that you've been very forward and you you completely know your story. Then I asked you to talk a little bit about the denial part of it. And you got, I don't I fighting for the right word, but you got wishy washy, like, once I asked you to kind of dig into the psychology of it. You You aren't as direct anymore, and you're you said, you must have said, you know, 15 times in the last three minutes. Like you, yeah, it's interesting. You didn't finish a thought. You just kind of were like, well, this, you know, and this you know, like, is it hard to talk about or do you not understand it? This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pump and 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 tandem, smallest pump yet that's powered by its best out. Rhythm 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 today. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, us, med.com/juicebox, or call 888-721-1514, us, med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and Dexcom g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating With a better business bureau at usmed.com/juicebox, or just call them at 888-721-1514, get started right now, and you'll be getting your supplies the same way we do

Patty 16:52
denial. I think I have a pretty good understanding about it. I think I was in denial that I had a really serious chronic illness, and kind of wanted to ignore things about it. Thank you for bringing me back, because I have so much in my head.

Scott Benner 17:18
I know you're doing wonderfully. Were you were you ashamed to have it? Were you embarrassed? Ah, you just, no, you just didn't want it to

Patty 17:27
be the case. I don't think I was ashamed. I don't think I was embarrassed. I think that I just was in denial, and it was something that came out of left field that I wasn't expecting. I never anticipated. You know, living with a chronic or prepared

Scott Benner 17:48
to do what you needed to do, yeah, I'm beginning to believe, Patty, over the years of doing this, that when people are like, it doesn't bother me. It's okay, blah, blah, blah. Like, I think that's partially denial too. Like, yeah, we can look at that and think of that as bravery, or they're so strong, or whatever. Or, like, you know, I mean, but yeah, as I'm, you know, listening to people talking to people watching hard and get older, like, as I'm doing all these things, I believe that there's a cycle here. I know it's going to be at your own pace, but you have to go through that entire cycle and get to the part that says, I think it's acceptance, like, I'm not a therapist, but like, I think you have to get, yeah, I think you have to get to that part where you just say, like, this is it, and it is what it is, and all of the T shirt slogans that go along with that, right? And I might have a seizure one day. I might pass out while I'm driving. This might happen. That might happen. None of these things may happen. All the possibilities exist. I'm aware of what they are, and I'm Zen about it. And and I think those are the people that I that when I speak to them, I think they found the closest thing to balance with diabetes and maybe auto autoimmune in general that I see right? Yeah, that's what it feels like to me at this point.

Patty 19:11
You You're so right, and what you just said made me think about

you as the parent you had no choice.

This was your child's life you were going to find out. And all parents, you know, they cannot be in denial. And my heart just goes out to all the parents parenting children with with any chronic illness, but because I have type one, I know all that it takes. And I was thinking for for parents of children with type one, it's a it's a different, a different way of approaching it. You. You cannot deny this. And you know also, most children get a week or five days in the hospital with this, with intensive, you know, care and education and blah, blah. But adults, they're like, Oh yeah, here's a vial of insulin. Some syringes go out there. You'll, you know, you won't die. I think you

Scott Benner 20:26
know to your your just your very recent point that it's different for caregivers. And I think you might have been talking about me specifically, like, even though, I mean, there's a good argument to be made that I have thrown myself into this in a different way and come up with a number of workarounds, you know, tips, tricks that we use every day that's kept my daughter's like, variability down, her a 1c, down, etc. Like, as she's getting older, it becomes more and more apparent to me

Patty 20:58
that none of that

Scott Benner 21:00
addresses the other part of it, like the management's great, but her journey, whatever her journey will be, is still going to happen. It doesn't get mitigated. I'm sorry for people who are hearing this for the first time, that psychological part of this whole thing is not mitigated by knowing how to Bolus or understanding, you know, the impacts of fat and protein. These things make your life better. They make your health easier. I think they make your day easier. It doesn't mean you don't have to at some point in the back of your mind, in a quiet place, in a dark room, come to grips with the fact that your body let you down, and it does every day, and it's going to continue to and you're going to fight against that until your last breath. It's not a thing that's going to go away. And how do you do that without making yourself angry, sad, lonely, sick, tired, all the other things that could possibly come from this, as much as I wanted it to be true, everything I figured out it didn't give Arden to get out of jail free card on all that other stuff, and I don't think it's going to do it for anybody else, either. That is the thing I hoped for earlier on as time goes past that. I just don't think that's I don't think that's how people work. There's no like you can't jump ahead through your feelings and and how your mind works. You have to, I don't know, I honestly don't know how to quantify it, but there's a thing you have to do, a process or a journey, or call where the hell you want. You don't do it. You get stuck where you are. And also, life happens, and life throws us a lot of

Patty 22:49
excuse me, stress. And for me, the longer I've had type one, and I have come to acceptance, I have I still get pissed off. I still have anxiety due to the fact that I'm running out of real estate or infusion sites. So every time I change it out the other day i i use true steel. I'm on a tandem tea slim, which I love, which also I had no clue when I switched from Medtronic to tea slim, all the intricacies. And I guess I was still like, oh, it's kind of like Medtronic. It's not. And here's where the Juicebox podcast came in, and your podcast has changed the way I can manage this disease better, and I'm so grateful. And I tell everybody who has type one or type, I tell everyone you know this, you gotta tune in. You're gonna learn so much. I mean, from pre bolusing to bumping and nudging to, I mean, all the tricks I may not I wasn't doing that up until, like I want to say I've been listening two years, and I kind of knew about the podcast, I guess, through Facebook, maybe. And then I was like, oh, that's just for, you know, parents with kids, Juicebox, I thought. And then I decided, you know, to start listening. And I was like, I was blown away. I've tuned in a lot. I love Jenny. I've had a session with integrative diabetes systems. I am finishing up the blue circle Health Program, which I found out from listening to your podcast. Me about blue circle health, and I just have to put in a big yoo hoo shout out. That program is another thing I tell everybody about a free program where you have endocrinologist, social workers, nutritionists, insurance, people that are there for you,

Scott Benner 25:26
it's a great idea. I hope they can get the word out wider about it, because that's always the biggest problem with anything, really is like, how do you, how do you make people aware of it? And so

Patty 25:37
word of mouth is one of the best marketing tools. I believe that I have found,

Scott Benner 25:42
I think that's the only reason the pop, the what you just said for the past three minutes, is the only reason why the podcast is popular. I can't really impact it on a marketing side, I've looked at things. I mean, I'm sure if there was, like, an unending amount of money here, I could just pour over top of something like that. Maybe you could force it, you know, but in the end, people need to hear it and think it's valuable enough to tell somebody else about. That's really how it works. It's the only way it works. Honestly, that's true. I want to thank you for your kind words, you know, over the last couple of minutes, and tell you that I've been having a rather emotional couple of weeks meeting a lot of people who have type one in person, who listen to the podcast. So touched me very deeply what you said, and I appreciate

Patty 26:28
it. I was thinking, you have a really, really tough job. I hope you're going to take a vacation and relax a little bit, because I know you did the cruise, right, and it sounds to me like you are an extrovert, and I think I am somewhat an extrovert, but I know I do need to have time to just kind of recharge my battery, especially when you're working so closely with so many people that have a lot of you know issues, yeah, you know health issues, families, all, all the issues. Well, then

Scott Benner 27:06
it will make you happy, Patty, to know that in nine days, I'm getting on an airplane with my family and I won't be back. Let's see I leave on Saturday and I won't be back till I won't be home until I think we land midnight the following Saturday when we come home. So there's a nice I know where I'm gonna be. I will be somewhere in a chair somewhere near an ocean, sitting very still and staring out into it and trying to comprehend everything I've learned over the last couple of weeks. And, you know, trying to relax and spend time with my kids and my wife and the four of us together, which, you know, those days are gonna get numbered as the kids get older and older. So yeah, I am gonna do that. I'll tell you that couple of things happened. So the cruise was awesome. We took about 100 people on a on a cruise, all listeners. We're gonna do it again next year. So if you're interested, there's links in the show notes that come with us in 2026 and six. And 2026 we're going to go out of Miami. I'm not going to get all these details right out of Miami through some like Coke Okay, Bay or something in the Bahamas. And then we're going to St, Thomas, st, Kitts, and then just the whole Caribbean cruise. It's going to be seven days this time. I don't want to say the cruise line, because I don't want to get it wrong, because they, there's two of them that begin with the C whichever one is the nicer one? Is it celebrity carnival? I guess now I have to, I'll figure it out.

Patty 28:30
Yeah, yeah. I forget, I forget which one's the nicer one. I guess it depends on who

Scott Benner 28:35
it's not the one where everybody's drunk on the on the and running around for seven days. Yeah, oh, that's

Patty 28:40
good family good. You wouldn't want to have a bunch of drunk diabetes running around. It's going to be

Scott Benner 28:45
family friendly. But also, you know, adult friendly as well. On this giant, newer ship, it's really awesome, like so we learned a lot running it the first time, but, but one of the things that I did that I don't know how well I'm going to be able to accomplish the next time, because I imagine it. I mean, with much luck, it'll be bigger than it was the first time. So this might end up being a one time experience for me, but I ate dinner with everybody that I went with. Wow. I basically ate dinner twice a night and sat at a table with 10 people. I didn't really eat the whole time I was picking and, you know, talking, right, just to hear people like face to face to, you know, they tell their stories and, you know, talk about how it's been valuable for them to show or, you know, you know, tell me other things that they wanted to tell me to really get to know people, look them in the eye and talk to them. I was exhausted while I was doing it, so hopefully I wasn't like a maniac, yeah, but I did basically a five o'clock dinner and then a 715 dinner, and then at nine, at nine o'clock, I was done five nights in a row, and yeah, I was so happy to meet everybody that way, because it just it was different, like I sat on the deck with a gentleman and his two kids, and we played a board game with a. Kids. I just sat there for an hour and we, I put and his, you know, his son has diabetes. We just sat there and just played a dumb board. You I beat those kids, by the way, they, they were no match for me. You didn't let them win. The first time, that was enough. The second time, I don't know, I caught a rhythm and, you know, listen, he was little. If I didn't beat him, what would it upset about me? You know, Kid beat me twice. He'd

Patty 30:25
say, Oh, he's not as smart as he thinks he is.

Scott Benner 30:30
But you know, between that and just like hearing from someone like we went out of a port in Galveston, there are people there that drove from Alabama, from South Carolina, that flew in from Toronto, from California, to get on that ship to, you know, some sun and fun and, you know, jump in the pool and stuff like that, and to meet other people with type one diabetes. But each and every one of them, I'm not lying, found a moment to come to me and say, I really appreciate that podcast. Thank you. And some people hugged by people. People told me they loved me, people I've never met before. Was really impactful. And then I was only home for a week before I went back out and went to friends for life in Orlando, Jeff Hitchcock's organization children with diabetes, and I did some work for tandem. While I was there, I interviewed a bunch of little kids, which you should probably be seeing on their social media already, and hopefully here on the podcast, we'll have audio from it at some point as well. And then I was a vendor, basically for three days. So on opening night, the vending tables open at I think it was 7pm and it went to 10 maybe. And for three solid hours, there were 5070, people in front of me, at times, waiting in line patiently to come up and say, Hey, this podcast really helped me. A new group of people, yeah. And then, and then a lovely guy named Rob Howe came over. And Rob has a podcast about diabetes too. He came over to me, and I, you know, I won't say his words here, but he was effusively kind about what I've done making this podcast, it to the point where, like, I can't, I couldn't quantify it the way he did, yeah, and what he thinks it's meant to him and to the people that hear it, and the community at Large. And I have to tell you, I was like speechless. I just said thank you. When I was done, I didn't know what to say, but it was one of the first times. I don't do a lot of industry things, right? So this is maybe the there's about 2000 people there, and I mean, they take up the entire convention center. As I walked around and experienced the space, and could see that like, no kidding, that every third person that walked by me looked at me like, that's the guy from the thing. I didn't know my place in the whole thing, you know what I mean. And then I got there and saw it, and I realized maybe all the nice things you guys come on and say to me, like, maybe they're like, real, you know, like,

Patty 33:07
yeah, they are real. They are real. And you know, you know, you do a podcast, and like you said, you don't, you don't look at the people. So you know people are saying it to you, but are you really getting, you know, the impact that you have made, and this, this legacy

that you've built for

yourself. I mean, you know when you didn't go into it saying, Oh, I'm sure you know you, you went into it to share your knowledge about what you have learned. And you know, I gotta say, I think you're really smart too to have all of that

come back at you and to

just let it wash over you, because I know people are mean, because I see some of the things I don't read them all, because people online or in Facebook that you know, people say things that are kind of ridiculous. We as human beings, what do we focus on? That's how our brains were set up way back in prehistoric times. The negative, you know, if a big monster bear is going to come and get you, you're going to be focused on that more. Then it takes 1000 good things to balance that out also.

Scott Benner 34:39
So I'm not a maniac. So, like, I was I so when, when, you know, yeah, but meaning, like, like, I am in a weird position where no lie daily, a couple of dozen people are going to tell me something really lovely. And if I sat there and read every one of those things and thought, That's right, I'm awesome. I'd be out of my mind. And I don't, so I don't, you know, you don't even allow yourself to do that,

Patty 35:04
really. That sounds like your wife keeps you home, seems to

Scott Benner 35:08
enjoy it. I don't want to take away her favorite thing to do. Yeah? I mean, every the whole life makes you humble, right? Like, yeah, and oh yeah, and at the same time, like, You're not wrong. I guess plenty of people like don't like me, and that's I would say that, you know, commiserate to the number of people listening. My ratio is pretty good, you know. And I think some people have legitimate, they make legitimate points, and some people are probably jealous, and some people are probably a little out of their mind, and some, there's a, you know, a spectrum of all that, just like, on the but, but again, you'd be a maniac. If, like, if you're gonna say, look, some people are crazy, you also have to say some people are overly enthusiastic, too. And like, so, you know, what's that saying is, like, you know, if I'm gonna believe the bad ones, I gotta, you know, you know, I gotta believe the, if I'm gonna believe the good ones, I gotta believe the bad ones and or, like, maybe, and so you just get to a point after you're doing it for a while, where you're just, like, I just don't care. Like, I, if I'm gonna keep making this, then none of you exist. Like, do you know you mean, like, I can't like, The Good, the Bad, that it doesn't matter anymore. Like, I'm a stream of consciousness. You'll take what you take from it, hopefully something valuable. And if not, I try, right? Yeah. So when you're in that mechanism, when you're doing this thing that I'm doing, and you're doing it to so many people, I mean, the podcast is about to hit 20 million downloads. Not a lot of podcasts do that. So like, when you're in that space,

Patty 36:38
I never listen to a podcast. It's possible I'm 70 years old, never was interested.

Scott Benner 36:45
May have drug A lot of new people into listening to podcasts. So, but the point being is that you just can't like to get through all these years of doing it. You have to do that. Well, listen, I'm just not going to listen to anybody because I don't think I'm the I don't think I'm Satan, and I don't think I'm Jesus, right? Like, so if people are saying stuff, I'm like, just, I'm just gonna do what I'm gonna do. But I realized on that cruise, and I realized that friends for life, and I realized when I stood face to face to people by doing that I'm minimizing the stories and I'm overvaluing the clicks and the downloads as as my measurement for my value. And I promised myself last week that I'm, I mean, listen, I'm still going to do the business of the business right, like and I know what I need to do to make it popular enough that people buy ads and so that I can keep making it I'm not I'm not an idiot. I'm going to keep doing what needs to be done. But when I stop at the end of the day and value myself, I'm going to value myself based on people's stories, their outcomes, their health and their happiness, and that's just how I'm going to do this from now on. Because I think I stopped listening to all of your I didn't stop listening to all your it's a weird thing to say, like I've read everything that someone sent me a note about, right? And it means something to me, but after you hear the 1000s or the fifth, you know, or the 5001 it's, you know, you're like, oh yeah. Like, I mean, you're not like, Oh yeah, I saved your life. Awesome. Like, it's not like that, but it is. You do expect what you get when it starts coming back. I'm like, yeah, they the podcast does what it does and and for the people it helps, this is usually their outcome. And I don't want to be blase about that. I don't think I have been, but I want to make sure not to be. And moreover, when I value myself later, the currency I'm going to value myself in is not downloads and listen through rate and all the other stuff that podcasting is behind the scenes. My value is going to be people with a smile on their face, saying I figured out how to do something. I feel healthier. I'm doing better, like that. That's my currency. So that's what I learned. Going out

Patty 38:48
immediately. Thank you. That's good. How. How many years have you been doing the podcast I

Scott Benner 38:54
started in January of 2015 so this is 2025 this is the 11th I'm making the 11th year right now, yeah, and that'll be over, you know, at the end of and the other thing too is that I put out five episodes a week. You know, I probably put out more episodes in, I mean, in fairness to people like, probably in two months than most podcasts put out in a year.

Patty 39:24
You know? Yeah, it's intense. It's an it's an intense workload that that you have. I mean, you're, you're a worker, you know, and you know, I'm really glad that you've come to this place in your journey, and you've recognized that, you know, you, you might have been coming,

not blase, but, yeah, I think I just got you, I got accustomed to it.

Yeah, right, but, but that you've realized that, in the end, it's about the people sleep. Lives that you have impacted in such a real and valuable way that, as you said it just before that, that we can go on having this knowledge that we've learned from you and use it in our own lives to help ourselves to manage this disease.

Scott Benner 40:30
I found myself giving myself a little credit yesterday for something. It was something that was said to me. I'd like to be clear before I say anything else. Like, I'm always really clear about it, like I make a living from this. Like, it's not like, you know what I mean? Yeah, it's not. But you said it earlier, and I, I know my intention, my intention is to help people that it, that it became this popular, or that it made money, was not the intention. It's a variable that I didn't expect, right? But I was speaking to have to be very vague here, I guess I was speaking to somebody I do business with yesterday who was talking to me about another person in my space ish, that they do business with that they said, We're going to stop, we're going to stop associating with them. And I said, Oh, that, you know, okay, like, I didn't know where, where this was coming from, because people are, generally speaking, do not. The people I work with professionally are not talking behind other people's backs, you know what? I mean, gotcha, yeah, what it came to is that I have a very good relationship with this person and I and we've known each other a very long time. And I think they were asking me, like, do you know this person? Like, am I making an assessment that that's accurate? And on this third person? And I said, don't know them personally. I've never spoken to them, never corresponded with them. I have one story that was given to me third party, and it scared me about them. Here's my here's what I was told by another person that I, you know, I think, was looking out for me, and I believed, and was in a room with a lot of other people, and so I've heard corroborating stories, you know, subsequently that could tell me that I that I think what was said to me was accurate. And I said, So my feeling about this person is

this episode was too good to cut anything out of but too long to make just one episode. So this is part one. Make sure you go find part two. Right now it's going to be the next episode in your feet us. Med, sponsored this episode of The Juicebox podcast. Check them out at us. Med, Comm, slash Juicebox, or by calling 888-721-1514, get your free benefits check and get started today with us. Med, the podcast you just enjoyed was sponsored by tandem diabetes care. Learn more about tandems, newest automated insulin delivery system, tandem Moby, with control iq plus technology at tandem diabetes.com/juicebox there are links in the show notes and links at Juicebox podcast.com. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. I'll be back very soon with another episode of The Juicebox podcast. 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. If your loved one is newly 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 delivers 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@juiceboxpodcast.com in the menu. Hey, what's up? Everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording, doing his magic to these files. So if you want him to do his magic to you, wrong way recording.com, you got a podcast you want somebody to edit? It you want. Rob.

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Scott Benner 9/11/25 Scott Benner 9/11/25

#1625 Three the Hard Way

Linda shares her family’s journey—one daughter with type 1, another antibody positive, and the oldest with Crohn’s—navigating diagnosis, anxiety, and Trial Net.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox podcast. Welcome.

Linda 0:15
My name is Linda, and I have three daughters. My youngest is my type one. My middle is TWO, antibody positive and in trial. Net. If

Scott Benner 0:26
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. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. This episode of The Juicebox podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about Miss boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox this episode of The Juicebox podcast is sponsored by the twist a ID system, powered by tide pool, that features the twist loop algorithm, which you can target to a glucose level as low as 87 Learn more at twist.com/juicebox that's twist with two eyes.com/juicebox. Get precision insulin delivery with a target range that you choose at twist.com/juicebox. That's t, w, i, i, s, t.com/juicebox, this episode of The Juicebox podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour, next.com/juicebox

Linda 2:24
My name is Linda, and I have three daughters. My youngest is my type one. My middle is TWO, antibody positive and in trial

Scott Benner 2:33
net, and the oldest one is just keeping their head down. She's got Crohn's disease. Nobody gets out clean, huh? Nope, none of them. That wasn't a joke about Crohn's. That was just, I meant about autoimmune in general. Well, three girls, yes. How old are they?

Linda 2:51
My oldest is 22 and then 20 and 17. Wow.

Scott Benner 2:56
What is it can I just before we get to the other stuff? What's it like having three daughters that close in age.

Linda 3:02
It's exhausting, but fun,

Scott Benner 3:05
okay? Because the fun parts are fun and the exhausting parts are exhausting, right?

Linda 3:08
Yeah, that's right, they're great. They get along. They do really

Unknown Speaker 3:12
well. That's awesome. Are you married?

Linda 3:15
I am okay. My husband and I have been married for 24 years. 24

Scott Benner 3:19
years. Has he ever watched them do something crazy and turn to you and looked at you like, you know, this is like, they get that from you, right?

Linda 3:26
No, he's usually just watching them and very thankful that he has daughters he never really wanted, or felt like he needed a son, really. Oh, yeah. Well, then I get to deal with all this stuff. Oh, I see he's, he's a little more hands off.

Scott Benner 3:40
Oh, he's like, I don't know about this girl, stuff you handle that

Linda 3:43
That's right. Oh,

Scott Benner 3:44
it is out. Yes, is there autoimmune on his side of the family? Your side of the family anywhere?

Linda 3:51
Yeah, he has thyroid disorder, hypothyroidism. He's never really been tested for antibodies, but his mom also has thyroid issues.

Scott Benner 4:02
Okay, we're not sure what Hashimotos is. What you're saying, No, we do not know for sure. Yeah, anybody else in the

Linda 4:09
family my mom has right now? Oh,

Scott Benner 4:13
there it is. There it is. A little on both sides, right? And, yeah. And just like that, who was diagnosed first, the type one, the type one, and how?

Linda 4:21
How long ago she was diagnosed? Four years ago,

Scott Benner 4:24
four years ago. So she was like, 13. She was 13. Did I keep all those numbers in my head? 2220, and 17? Wow. I might be good at this before I'm done. I mean, I'm not there yet. I'm having a good feeling like I'm cresting the crest in the hill. Wow, that's something. So she's 13, she gets diagnosed with type one. How does it present like? How do you even know she needs a doctor?

Linda 4:49
She hadn't been feeling well, so she was two weeks before eighth grade when she was diagnosed. And I would say, looking back over seventh grade, she was just having. More days that she just wasn't feeling well, nothing major, but like upset stomachs and that kind of thing. Yeah, through the summer, she started having episodes, particularly like when she was showering, where would she she would feel dizzy and like she was going to pass out. So at her well visit, which was like two weeks before her actual diagnosis. We talked about it, and they basically just test her her blood pressure, yeah, and I think they tested her hemoglobin and said she's got orthostatic hypotension,

Scott Benner 5:37
okay? And, and did they not find that odd for a 13 year old,

Linda 5:41
apparently not. The nurse wasn't super concerned. She just said, your blood pressure drops when you're starting to feel weird. Drink a Gatorade, it'll help you feel

Scott Benner 5:50
better. But in actuality, she was approaching DKA, Yep, yeah. So close. We were so close to figuring it out. Well, listen, it's, I mean, Linda, you must know too, like it would, it would be a stretch for somebody to off of that to say, well, we should check your blood sugar. You know that's,

Linda 6:08
yeah, I know, yeah. And she wasn't losing weight yet. That's what like after we discharged from the hospital, they brought us right back in, and the doctor said she had not had significant weight loss. That's why we didn't look for it, yeah.

Scott Benner 6:22
Well, what happened next, though, I mean, and how much Gator did she drink? Needlessly? She

Linda 6:28
was probably drinking one or two a day,

Scott Benner 6:31
which frequently she didn't feel well,

Linda 6:34
yeah, exactly, gotcha. So she she just over the next two weeks, she just started getting more and more, you could tell something was wrong, she started to lose weight, although I wasn't, we weren't weighing her to know that for sure, but kind of at the end, you could see that she lost a good amount of weight. Yeah, yeah. Two weeks later, it's a weekend, it's a Sunday, I know she's not feeling well. I can see it the night before, actually, she'd started to feel better. She hadn't been eating much, starting to drink lots of water, and she started to feel better. Was on a Saturday, and went with her sisters to 711 and got a Slurpee.

Scott Benner 7:08
I've been at a Slurpee in forever, yeah.

Linda 7:12
Well, they're good, yeah, but she came home and threw up, and then my husband said she's got diabetes. And I said, no, wait, like there's, there's no way. Why would she have diabetes,

Scott Benner 7:24
Mister, I'm not involved. Knew that was diabetes. How do you figure that out?

Linda 7:27
Figured I think he thought, well, she just drank all that sugar, and her body needed to get rid of it, right? Okay, so that's his thinking. And I, I said, there's no diabetes in our family. Why would she have diabetes?

Scott Benner 7:39
You didn't say I should have married a smarter man. That's probably, is that what you were thinking when he said that? You're like, oh, dummies. Finally got something to say, and that's what he came up with. I really, I've been married a long time. I really feel like, I know how you girls think sometimes so you're like, my mom told me not to marry him. He ends up being right by mistake. A little he was right, but once he says that, what do you end up? How do you manage that? Like, how do you how do you hide your disdain for him, and then move forward?

Linda 8:11
I just, I just said, No. I said, There's no way she has diabetes, she's got the flu or something. I know something's going on, but so the next day, I know, okay, we've got to go back to the doctor plane to call Monday morning, and it was later in the evening, like five o'clock, and I just looked at her, I said, Do you want to go now? And she said, Yes, okay, so

Scott Benner 8:33
yeah, like she went to it. We don't want to wait any she knew she couldn't wait any longer. Yes, she knew,

Linda 8:39
right? She knew she was feeling so bad and something was wrong. Yeah, clearly, gotcha.

Scott Benner 8:43
Did your husband go with you? I'd hate for you if he was there when, when you found out he was right? No, no, I went on my own with her. Good, good, good, smart. What was worse, finding out your daughter had diabetes, that your husband was right about something, and you were

Linda 8:57
gonna have to tell him definitely finding out she had diabetes. Yeah, no, I know. So you went to urgent care, then, well, we went to urgent care, but it was closed. Okay, so then we went to the emergency room. Gotcha. Gotcha. They

Speaker 1 9:10
tested her blood sugar right away based on just how she looked, yeah,

Linda 9:15
and the fact I kind of gave the same story. She'd been having all this dizziness. This is what they diagnosed her with. She's getting more sick. Talked about how she threw out the night before and her blood sugar was 410,

Scott Benner 9:28
wow. Hey, did you mention to the ER people that, er people, I know there's a better way to say that, but did you mention to them that your husband thought she had diabetes? No, I did not. No, okay. I was just wondering if you led them and no, okay, well, that's got me. It's cool. They figured it out right away. She was 410 that's not like crazy, right? Was she in DK,

Linda 9:49
though she was, like, just kind of starting the process. She had large ketones. She like, she didn't have any organ damage going on at all. But. Yeah, she was diagnosed as being a DKA, yeah.

Scott Benner 10:03
Wow. Did you hear that story on the podcast recently where the the kid ended up with like, like, vomiting up, like, dead tissue from DK, no, I didn't hear that one. Don't listen that one. I don't make it. Was that first time somebody said that to me. So, okay, so not, not too terrible then. I mean, other than the diabetes and being in the ER and everything, but like, could have been worse. How long is she there? What do they tell you? What's the teaching like, what do you go home? Understanding.

Linda 10:31
So we had to transfer to a different hospital, because the first one we went to, apparently they don't do pediatric endocrinology, okay? So we had to go to the bigger hospital. So we were there. Went in on a Sunday. We went home on Wednesday, the first 24 hours was really still in the ER, the whole time. Okay, once we got up to the room, yeah, they started. We learned how to do injections, how to calculate carbs, all the basic stuff, what to do, about ketones, what to do, and she's low.

Scott Benner 11:04
Yeah, okay, so just basic, like, top level stuff, yes, where would you say you're at now, four years later, with the understanding, like, How's she managing today? How's she doing?

Linda 11:13
I think our understanding is much better. She does pretty well. She's got a lot of anxiety that impacts her management. So there are times like at school, she'll skip dosing at lunch and things like that. But she's doing better. I mean, each year she's gotten better. How about that?

Scott Benner 11:33
Do other people in the family have anxiety? Did she have it before the diabetes?

Linda 11:37
She had anxiety before diabetes, and yes, there is anxiety and other in her oldest

Scott Benner 11:43
sister. How about the family line, too? I tend to

Linda 11:47
have some anxiety. Gotcha. Yeah. Are we Irish? I have a very tiny amount of Irish in me,

Scott Benner 11:55
just a tiny bit, yeah. What is your genre? What background are you?

Linda 11:59
I'm half German, a lot of English, and that little bit of Irish,

Scott Benner 12:03
okay, I'm not finding common words today. I said hospital people, and I asked about your genre for your background,

Linda 12:11
but I understood what you meant, at

Scott Benner 12:14
least it's coming across that way. How does the anxiety impact the management she

Linda 12:20
worries a lot about going low and then not being well, maybe needing assistance. But also she worries a lot about alarms going off, like when she's in school. Oh,

Scott Benner 12:32
she doesn't want people to hear the it's not even I would imagine. She doesn't even care if they know she has diabetes. She just doesn't want the beeping to bother people. She doesn't, yeah,

Linda 12:39
she doesn't Yeah, she doesn't want the noise. She doesn't really love people knowing she has diabetes, so she doesn't tell everybody. She's not very open about it. She doesn't want the attention on her. It's like all social anxiety stuff. Are we

Unknown Speaker 12:52
doing anything for the anxiety?

Scott Benner 12:54
Yes. What do we do? Working for she's in therapy. It has been for a while. Does it help? Not as much as we'd like it to. Is it more like the anxiety doesn't get better, but her like coping skills for having anxiety are getting better?

Linda 13:11
Yes, slowly, she's doing better. So she's told a few more friends about having diabetes, okay, which then helps, because she doesn't have to worry about them finding out.

Scott Benner 13:23
Ah, gotcha. So you keep it from them. And then there's anxiety about, I'm keeping a secret. Somebody's gonna find out my secret. Yeah, no, I didn't know that's interesting. I didn't think of it that way. But as far as it just like trying to give people like, like expectations, like, you don't go to therapy and somebody talks to you for a while and you're just like, oh, I don't have anxiety anymore. This is awesome.

Unknown Speaker 13:47
Not like that, right? Yeah, no.

Linda 13:50
Wish it was that simple, yeah.

Scott Benner 13:52
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Linda 16:28
Yes, I definitely do think that's a possibility, and it's something that we've talked a lot about and more. I mean, just you know how diet can have a big impact, yeah, on your mental health. So yes, I do think that there's very possibly a connection.

Scott Benner 16:46
I keep wondering if we're gonna because of glps being used, if people's inflammation is gonna get lowered and you're gonna start hearing like, side you know, like side effects, like, oh, I used to be much more anxious than I am now, or something like that. Like, I keep, I keep thinking like, maybe that's the thing we're gonna hear in coming years because of the population. I mean, it took me some time to interview enough people to think out loud like, Wow, a lot of these people talk about anxiety, like a lot of them, you know, like, I really think that if I had a podcast that where we were just talking about, I don't know, painting color choices for your interior but I really am talking around words interior design. Like, that's it. It's interesting. My brain's doing that today. If I had an interior design podcast, and for some reason, asked everybody if they were anxious, I don't think as many people would have answered in the affirmative as when I'm talking to a bunch of people who are somehow related to or have type one diabetes, like, I don't know, like it just like. So anyway, thinking that that population may have a greater propensity for whatever reason, the more things that they do that, you know, we can kind of look back at and go, Hey, like a lot of type one started using glps in the 2023 2425 like, and hopefully they'll go to maybe a daily pill sooner than later that's as effective as the the weekly injections are. Like, maybe we'll start hearing back from people like, hey, you know, I used to have this going on and doesn't seem as bad anymore, or whatever. I don't know, but that would be fantastic. Yeah, right. Like, I mean, I've had like, benefits from GLP that nobody like, when I took it, like, originally, they were like, Here, take this. It'll, you'll lose weight. I was like, Oh, cool. I definitely needed to lose weight, so that'll be great. And then all of a sudden I was like, wow, my digestion is better, which, you know, makes my elimination better. And then that fixes a lot of, like, you know, a lot of problems that you have in your life. And then all of a sudden I was like, Oh, my God, I don't get like, low iron anymore. And like, you know, like, you start seeing like, these benefits, like piling up, or you see all the women online who are like, Oh, I've had PCOS my whole life. I couldn't get pregnant. All taken to GLP. I'm pregnant now, that kind of stuff. So, yeah, yeah, no, it's pretty it's pretty interesting. There is a great episode here where, I mean, and this is a stretch, I'm certainly not saying like, you should all start taking a GLP if you're bipolar. But there's an episode on here where the mom, a mom, comes on for and talks about a child who has type one and is bipolar, and they, you know, we're doing a lot for the bipolar disorder. And they, they made some really good progress with, you know, some understood therapies, but a lot of it still remained. And then the kids started taking the GLP and, like, she's, like, a lot of the problems she was having just disappeared. And I was like, that's crazy. Like, and Dick kid was really having trouble. Like, they had to, if I'm not mistaken, they had to, like, somehow secure the second floor windows, because the girl would have ideas of just, like, jumping out the window, you know, like, so who knows? Like, I don't know anyway, it's pretty far away from your your story, but that's

Linda 19:44
right, I would love to see more research. I know they're doing some with type ones. It's very interesting the effects that might have on insulin resistance,

Scott Benner 19:52
and, oh, it definitely does that. Like, if you're a type one who has insulin resistance, I think a GLP helps you immeasurably. Arden. And have been in a situation where, for like, her needle fears, like she hadn't taken her GLP in a while, so we adjusted her insulin out, you know, to manage things. But still, like spikes at meals, much more, you know, with the same amount of food, same kind of food, much worse, spikes, harder to bring back down a 1c, starts to rise. Also, you don't realize that when you know she started using the GLP, like, pre bolusing became less and less important. And so then you suddenly aren't using it anymore. But you don't remember, like, oh yeah, I should Bolus 20 minutes before I eat this, because on the GLP, you kind of didn't have to all of a sudden. And and, like, all these little things together. And then she went back on it Friday this week. So one, two, like, four days ago, okay? And I gave her not even a full dose, and today I had to adjust back her basal and her insulin sensitivity. So I had to take insulin. Yeah, so

Linda 21:01
yes, that's all very interesting. Yeah,

Scott Benner 21:02
no, it really is okay. So poor kid gets type one at what point? What happens next? Do you find out that the middle child has antibodies, or do you find out that the oldest child has Crohn's? Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the MiniMed 780 G system, the MiniMed 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to an 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox

Linda 22:22
the antibodies came next. So after diagnosis, we got information about trial net, and I just kind of dove in, because everything that happened with her, we missed the diagnosis. I didn't want that to happen again. Okay? I thought, if somebody else is going to get it, I want to be prepared, right, and know that it's a possibility, yeah, and then be watching more closely. So it was probably she was diagnosed in August, and then probably in September. We did the trial net. We did the finger stick, which is not as easy to do as you think it

Scott Benner 22:55
should be, the at home thing. Yeah, yeah. I've heard people tell stories. So

Linda 23:00
we did the finger stick, and the my oldest came back completely negative, and then the middle was get 65 positive. So they think how long they don't really know. So she came back positive. Then we had to go do the blood draw so they could test for more antibodies. And she was still just get 65 positive at that point. So this is 2021 she was tested annually after that, and last year she came back with a second antibody.

Scott Benner 23:30
Okay, so 2021, till 2024 just one and now a second now, yes. So one antibody, what do they tell you the likelihood of type one is like, how do they percentage wise, talk to you about it? They said it's

Linda 23:47
20% chance. Well, the way they phrase it to me is, she's 80% not likely to develop type one.

Scott Benner 23:53
Oh, what a nice way to say that is she now 60% unlikely to develop type one.

Linda 23:59
Yeah, they've not given me another percentage. But

Scott Benner 24:01
now they're like, oh, maybe you should start saving your extra supplies now, right? Does two indicate that it's probably coming? Yes, yes,

Linda 24:11
and her second one is the insulin antibody.

Unknown Speaker 24:14
Oh, I

Scott Benner 24:15
see, yeah. So the ones that that you're indicate for, they mean a little more than just, like, you have one or two or something like that, right? Yeah, right. So what do you do? Does she on, like, a like, do you put her on a CGM, or do you just test your blood sugar once in a while? How do you

Linda 24:32
handle it currently? So through trial net, she's doing our oral glucose tolerance testing every six months. So she's had that done twice. She actually goes again next week. They re check her antibodies every time as well. So she spends stable her a 1c was 5.4 both times.

Scott Benner 24:51
That's still higher, though, than what you would expect, right?

Linda 24:55
It is, yeah, higher than it probably should be. There was no increase in. It between the two six in the six month time period.

Scott Benner 25:03
Gotcha, and that's positive, yes, like a pot, yeah? Not positive. Like, positive anybody, yeah, it's good thing, right? Well, I have two questions, really. My first one's about you, if you're already an anxious person, your anxiety probably led you to trial net, and then you found out she had an antibody. So then you your anxiety was rewarded for being anxious. Do you see what I'm saying? Like, it was that kind of bad for you, that that went that way. Because now, do you have that underlying feeling of, like, see, it's not anxiety. I'm right.

Linda 25:32
No, not really, okay. Like, when we got the first one back, I guess maybe I was a little bit more anxious then, but then the second one, I was just sad. Okay, yeah, they I cried when I got the phone call,

Scott Benner 25:45
because, you know what it means now,

Unknown Speaker 25:47
yeah, yeah.

Linda 25:48
Because now it went from, Hey, she's 80% not likely to get it to Yeah, you're probably going down this path. We just don't know when.

Scott Benner 25:57
And you know what Diabetes means too, yeah. Like, if it was just, if it was the first time, you might be like, Okay, you still don't exactly know. Can I ask you when you think of that? When you think of like, my daughter is going to get diabetes at some point, probably, what does that mean to you? Like, what do you think is going to happen to her? Like, big picture is it, are you worried about her feelings about her health, about her like, you know what I mean, like, what pops to mind when your mom worry jumps in

Linda 26:26
there. Yes. I mean, I worry about her being anxious about it. She's really not an anxious person. So she's handled it pretty well. I mean, I think about now, okay, at some point this is going to happen. She's 20, right? So she's going to be a full adult and on her own, likely. So learning how to manage without me there to help will be different, yeah? And want to be able that I can still support her through that,

Scott Benner 26:53
yeah, yeah. Plus they're like, you know, you know, when you're that age, not like, really an adult, you're just like, an adult on paper, yeah? And then the very first adulty thing she's gonna have to do is, you're worried, is, like, learn how to take care of diabetes, right? Which you now know what that means. And I'm assuming you didn't find it all that easy.

Linda 27:15
No, it's not. And it's just she'll be able to learn it and do it. I don't have any doubt about that, but it's, it's exhausting, yeah, so, you know, I don't want her to have to have that in her life. But if that's what it is, that's what it is. I mean, part of doing this, my goal in doing this, is now, like trial, not, not just does the monitoring, but when you hit a certain point, like when you start to be disc glycemic, they have other studies that are going on in prevention. So how long can we delay it now that we know that it's there?

Scott Benner 27:49
Okay, all right, so you're gonna like, and your daughter's up for that? Yep. Okay. Are you talking about tz old she and I

Linda 27:56
have talked about it a little bit. I have mixed feelings about it. What are your mixed feelings? Well, it's very expensive, I know, but that doesn't mean our insurance wouldn't cover it. Potentially it would. I know that it's a it's not an easy process to go through, right? It's intense, but again, if you can delay it, it's May worth probably worth it.

Scott Benner 28:18
I think what tz old is like 13 I'm guess. I think it's 13 treatments every day, like you get an infusion every day for 13 days or something, it might be 14 or something. Don't don't hold me to it. Often, you have to travel somewhere to get it accomplished right now, because there's, it can't be done everywhere. So I think I've interviewed a woman who, like, spent two weeks in a hotel with her kid, and they did it. Yeah, so for that effort, how much time do you want back? Like, if you got to decide how much you got back, you know what I mean, like, is it if they did that to her and it pushed her diabetes off nine months, would you be like, uh, what a waste of time. Like, the enemy. Like, what number makes it feel valuable to

Linda 28:55
you? I mean, I'd probably want five years, okay, at least.

Scott Benner 29:00
And that would make it feel like, okay, this was worth it, right? Gotcha, but they don't have any there's no data or promises that are made. Yeah, no, there's not Yeah. And you talked about that with your daughter, and she's like, it's cool. I'd be up for trying. I think she

Linda 29:15
would do it if that was the best option. And I don't know for sure what else triland is doing, but they did talk to us about that they do have ongoing trials or other stuff. Indiana University, okay, that are prevention based. So I would want to find out what those are and what the techniques are that they're doing, and try to decide side effects and all that stuff.

Scott Benner 29:37
Yeah. Okay, interesting. And when you guys sit and talk about, I mean, she obviously sees her sister with type one. She kind of has a vibe for it, like, has she come to you and expressed any feelings?

Linda 29:50
Her biggest concern is she has ADHD. So her biggest concern is just the managing the day. Daily regimen, right? Everything she needs to do in a day, and not forgetting, not getting distracted, so being able to manage the two things at once.

Scott Benner 30:09
Huh? She's ADHD, you didn't mention that. What else did you not mention?

Linda 30:14
Think that's it. Oh, my oldest is. ADHD,

Unknown Speaker 30:16
also, do you?

Scott Benner 30:19
No, okay, you just have the anxiety piece, yeah? Medication for you. I do not know. Have you thought that you should ever or No,

Linda 30:29
many, many years ago, I did some antidepressants for a while that were effective, but I didn't want to be on it forever. Yeah? So

Scott Benner 30:38
how effective? Like, what did they do for you?

Linda 30:41
Well, I was, I mean, at that time period, I was having more depression issues, so it was more like you're in a fog, right? So the antidepressant just helped, kind of, I feel like it woke me up so that I could do what I needed to do to get through

Scott Benner 30:59
that time period. How long did you take it for? I think about a year and a half, pre or post, kids, pre, kids, pre kids. Were you married then,

Linda 31:10
no, I actually met my husband during all of

Unknown Speaker 31:14
that. Oh,

Scott Benner 31:16
you met him during while you were taking the medication. Yeah, I gotcha, yeah. Have you felt like that again? Have you felt that fog again since then?

Linda 31:24
Yeah, I mean, I go through some time periods where I'm a little bit more depressed than others. I manage. I'm okay, yeah.

Scott Benner 31:32
How do you manage crack Okay,

Linda 31:35
no, what do you do? Oh, no, just, I mean, a lot of it, honestly, it's just, I just keep going. I'm busy. But, I mean, I love to read. That's something I do that helps me lots of prayer. So

Scott Benner 31:48
seriously, distract yourself. Kind of turn towards, turn towards religion, that kind of thing. Yeah, okay, all right, any of the kids have that

Linda 31:56
now they're all more on the well, they're more on the anxious

Scott Benner 32:00
side thing, more on the anxious, like, you know, when you said, when you said, more on the I thought, like, for a second, I thought you said, I thought you said, no, they're morons. And I was like, what? I was like, This is so inappropriate, I swear, for like a split second I was like, what does this lady do? She seems so reasonable, and now she's just gonna make a dumb joke in the middle of a depression conversation. But no, that's not what you were doing. So they're just more anxious. Is your husband? Is your husband anxious? Oh, no, not at all, not at all. He's just standing off this light going, like, I don't know what's happening. I'm just trying to live.

Linda 32:30
Yeah, exactly.

Scott Benner 32:32
Okay. I want to hear about the Crohn's. Like, when do you figure that out? Is that more recent

Linda 32:38
she was diagnosed a year ago, like, June 2024, what's living like that? Like,

Scott Benner 32:46
horrible, yeah, what is, what is some of the markers of it?

Linda 32:50
So for her again, really, I think we can go back a few years, though, because when she graduated high school, started college, she started having pretty significant anemia. Okay? I think that that was really the start of the Crohn's, because that's one of the hallmarks I see. And then it's like early 2024 she started having diarrhea and stomach problems. She lost like 20 pounds over two months, because you don't absorb nutrients correctly with Crohn's, that's one of the problems, right? Can't hold her vitamin D was low, like she was just had all kinds of stuff going on, right?

Scott Benner 33:27
Not absorbing anything, so not getting in her iron, not getting in her vitamins, yep, and losing a bunch of weight, not being able to hold weight even, did she have weight to lose? I'm sorry to ask like that. No, she did not. Okay, so, so off of a, what we would call, like a healthy frame. She lost 20 pounds off of that. Yeah, yeah. What did you notice first? Because I don't imagine, like a kid that ages comes to you right away, and it's like, I'm having diarrhea, like, or maybe they do, I don't

Linda 33:52
know. I know she's she's pretty open with all that stuff with me. So I knew pretty early on. And she was at college as well, which was, which is close to our host. She lived at college, but it was only like 25 minutes away.

Scott Benner 34:06
Did she remark about being extra anxious, nervous, upset about being at school. No, no, no. She didn't have trouble with that. No, she did not okay, okay,

Linda 34:20
but she did go through her college significantly downsized in the last year. It's like she was starting to have her symptoms in February 2024, they made this big announcement that they were basically cutting almost every program, and then she went into what we consider was probably her first flare, because stress can do that as well.

Scott Benner 34:39
Yeah, the stress hitter, yep, the college just was like, hey, guess what? Yeah, I know some of you are here for accounting, but too bad is that? Like, what happened? Yeah, essentially, wow, yes, I once knew a group of boys who played baseball at a school, and the school just announced they weren't gonna baseball anymore.

Linda 34:58
Well, that's essentially what they'd. It's a it's a school, a university, that has two campuses having some financial difficulty. They chose to to basically eliminate almost every program in all athletics at the campus she was on. Oh

Scott Benner 35:14
gosh, yeah, did she play a sport too?

Linda 35:17
No, but she was in marching band. She's a music person, right?

Scott Benner 35:22
And they cut that as well, yeah, well,

Linda 35:25
they cut everything. So this was, like, this last year. She ended up being able to graduate in May, but not with the degree she wanted. Was, like their last year, and then going into this next year, they moved everything. They had a small campus close by as well, where they're doing health professions, but that's open and nothing else. They

Scott Benner 35:45
went from a university to basically like a skill school for one thing, yep, awesome. You want to bad mouth them. Maybe, would you like to say the name of it? No, that's okay, okay, all right. Well, that's very kind of you. If I ever get Arden back on here and I ask her what she thought of the college she went to first, I'm sure she's gonna say some things that are gonna be terrible. So very nicely to hold it to yourself, very upsetting. They don't do it for free, I guess after they screw over your life's work and plans nothing like that, right? It all still costs the same amount of money, yeah, which still cost money. Was she too far along to transfer to go somewhere else? She was

Linda 36:25
in a music education program and was trying to she really had two more years to go, so she was trying to stay there as long as she could, get as many classes as she could, but they kept canceling classes. Okay? So she ended up graduating with a bachelor's in music.

Scott Benner 36:41
I thought you're gonna say she's an actuary, but God no,

Linda 36:45
and now she's going to go back to a different school to do post bachelor's teacher certification. Oh, you get to pay more money. Actually, the state will help pay for this

Scott Benner 36:55
one awesome, because they know you got screwed. Well, they need teachers. Oh, oh, I see, I see. Well, that's nice, but wow, that sucks. Geez, life's already hard enough you're pooping your pants, and this happens on top of it, like, awesome, by the way, is how it would have occurred to me. I'm sure she went to you at one point and said, is anything ever going to go right for me? Right?

Linda 37:17
Yeah. I mean, she definitely had those feelings, yeah. So she's going through all this, it took us. It took us a few months, couple months to really figure out what was going on. We actually looked at type one again. She still had no antibodies. But her, I actually, I put a CGM on her when she started going through all of this, and she was having high blood sugars. But we have learned that Crohn's can impact that as well.

Scott Benner 37:43
Before you knew it was Crohn's, you panicked a little bit about the diabetes, by the way, with good reason, and she had high blood sugars. You must have been distraught when you saw those high blood sugars.

Linda 37:52
Yeah, well, I figured this was it. Yeah, she was, she was going up to like, 200 after some meals, and I also going lower. Like, she was kind of all over the place, unreal. Her primary did a oral glucose tolerance test, which wasn't done correctly, in my mind, but because they did a they did a fasting and then they did a two hour they didn't do anything in between.

Scott Benner 38:15
Okay, so you didn't, did you say anything while it was happening? You're like, Hey, I don't think you're doing this

Linda 38:20
right. Well, I asked what they were going to do, and the lab tech just said, we can only do what the doctor ordered.

Scott Benner 38:25
Are you starting to wonder if anything's ever going to

Linda 38:29
go right, or if people can do it correctly?

Scott Benner 38:32
Yeah, that isn't going to happen. Yeah.

Linda 38:35
So we did see an endo who her primary did re check antibodies for us. So we saw an endo who did say, no, this doesn't look like diabetes. Check some other stuff, like her cortisol. And she had so many tests in that time period, check for celiac, and ended up at gi who actually figured out was Crohn's, because she had multiple she had multiple ER visits from the pain that she was in, yeah, and they did CT scans that found the inflammation.

Scott Benner 39:08
And then what's day to day management look like for that, she

Linda 39:11
drinks MiraLAX every night, just to help make sure she stays regular, because you can have either constipation or diarrhea. She's on like Pepcid. She takes supplements, like she's got her vitamin, vitamin D. We, I think we figured out an iron regime that is helping, but it's not perfect. That's been a very tricky one. She is on a biologic which one so she has she's on interview, okay? And so that's an every eight week infusion, and that has helped

Scott Benner 39:43
tremendously. Yeah, you've noticed a bump in her health from that. Yeah, definitely. What do you think it's doing for

Linda 39:49
it's decreasing all the inflammation. Okay,

Scott Benner 39:53
have you tried getting her an iron infusion instead of the iron tablets?

Linda 39:56
We've talked about a little bit what we're doing right, or what she's doing right? Now she does the pill every other day, and she's doing a liquid then on the off days, because the liquid does absorb better for her. Yeah, that helps. But her ferritin still a little

Scott Benner 40:12
low. How low would you tell me if you knew? Oh, she just had it done. It wasn't it was like 12, yeah, that's really low. Is she tired all the time? Yeah, yes. I'm telling you, try, try the infusion. You take a 12 ferritin to a doctor and say, hey, look, we'd love to, you know, here's her low iron symptoms, lay them out and say, like, you know, I'd love for you to write her a prescription for the an iron infusion. Try it one time, because I've gone through them a number of times, and they are restorative, and maybe once it was up higher, maybe the system you're on would help her stay up. Yeah, because I don't know how to grow from a 12. And if you haven't heard, I think it's in a thyroid episode with Dr Benito. She very strongly believes that a woman of menstruating age, the minimum your ferritin should be is 70.

Linda 41:07
Yeah. Pediatrician had told us once, when she was dealing with anxiety stuff and her anemia and she was anemic, that we should shoot for 75 per ferritin. Yeah, getting other doctors to buy into that has been tough. Just

Scott Benner 41:24
tell them to shoot you. Say, it looks like, you know, like this. You go, you go into, you say, Listen, shut the up. And just do it. Like, what do you

Linda 41:31
care? This is what I want. Yes, like, what do you care?

Scott Benner 41:35
Just try it and see. You know what I mean, because there's a whole generation of women walking around with their ferritin too low, and nobody takes it seriously, and it's terrible. And not just for your daughter because they're Crohn's, but like people who have heavy menstrual cycles all kinds of different things. There's a lot of tired ladies out there who could be helped, and a lot of physicians who just go like, Oh, you look like you're good, you're in range. I got 12 Barton's insane. I almost passed out when my farton was 12, yeah, yeah. I don't know how she's dealing. Is she what they call snippy? No, not usually, not usually, because that's what happened to me. Oh, my fart and got too low. I turn in a little bitch. Like, I complain. I would just, like, I'd be terrible about things. I think you bring my fart and back up, it just completely went away. Now. I'm just the regular level of terrible No, but seriously, like, that's one of the ways it affected me. Also, I'd get lightheaded, cloudy, I'd be exhausted by one, two o'clock in the afternoon, I couldn't get rested. Like she's having those things, I'm telling you, you hit her with one of those infusions, and then her body gets one chance to remake. Because, you know your body remakes blood cells all the time, right? So the next time her body builds new blood cells and is building it with enough iron, ferritin, etc, in her system, everything is going to come with that infusion, those red blood cells are going to carry oxygen better and boom, she's going to just feel better. It's crazy. She'll feel great. Yeah, yeah, do it. Trust me. Make somebody Yes. I will

Linda 43:01
talk to her and have her reach out to her.

Scott Benner 43:05
She's 22 she'll never do it, I know,

Linda 43:07
but she has to do all the interaction. She's done, she's actually done great. She's learned a lot over the last year with dealing with the medical system. Nice, good. I'm glad. Yeah. I mean, it's obvious talking to doctors, yeah,

Scott Benner 43:16
yeah, I actually have to call a doctor for Arden when you and I get done, because Arden doesn't have a voice. She just had her tonsils out. Okay, tomorrow's a week ago, and you think, oh, tonsils. That doesn't sound bad as an adult, not a fun thing. So, yeah, I've heard it's bad. Yeah, there's a referred pain that gives you, like, terrible ear pain, on top of the fact that the where they slice the tonsils off, like they can't stitch it up, or anything like that. So it just heals over. Then eventually you have scabs in the back, and then they have to get it's just, it's been six days so far, and Arden, who is really good with pain, like just, I think having autoimmune issues makes you maybe a little more accustomed to not being comfortable sometimes, right? You know, joints and things like that sometimes. And she's like, every four and a half hours, she's like, it's almost time for my pill again. Like, if I wait too long, it's gonna be terrible. And then the the refer to your pain gets she said it feels like she's like, you ever like, put a Q tip in your and it goes in too far and like, feels like it pokes the back, and that's sharp pain. I was like, yeah, she goes, it's just like that all the time. I was like, oh geez, It's so terrible, like, so Nevertheless, I have to call and, you know, her doctor for something. But she she tried to speak yesterday for the first time on like the fifth day, and she said she wrote down. She's like, that was not a good idea. That hurt really badly. I'm not doing that again. So anyway, she hasn't spoken in a week. That would be very hard to do. Yeah, you I would be tough for me. Although they've been doing a lot of different things, I get a lot of texts with long descriptions. We have a white a portable whiteboard. She's writing stuff on constantly. Last night, her girlfriend found like, a translation tool or something. It speaks it out loud. So there was just a robot voice in the house last night saying stupid things for a while, a lot of stuff was going on. Do people call friends? Who are girls girlfriends still? Or is that a thing? I remember my mom saying, My girlfriends, you call your friends girlfriends? The girls?

Linda 45:16
I don't and I don't think my daughters do that, yeah, but it is something that when I was young, people say, my grandma would say, I'm going

Scott Benner 45:25
to stop saying that. Then her friends, anyway, her dumb friends were over yesterday, then they were doing that. Okay, so we have it laid out here. We understand the lay of the land for all three kids. So I want to spend the rest of the time talking about how you are. I don't know it managings Maybe the wrong word, but like, How are you, I guess, managing the right word. How are you managing the unknown part of your middle daughter's half diagnosis is your younger daughter feeling any certain way about her sister getting type one at some point, how do you manage, in general, with all these health issues going, like, Do you have a job? Yes, I do. Oh, my God, you shouldn't have to have a job.

Linda 46:11
Yeah, there are days I've had that thought,

Scott Benner 46:13
yeah, there should be some sort of societal agreement where, like, your three, your three girls, have three different autoimmune issues, and you're like, Yeah, you know what? You don't have to work anymore. Like, how do you manage this whole like, can I just say cluster? How do you imagine

Linda 46:27
it's just a lot they're they're old enough that they do a lot of it. So for me, it's a lot of well, like, support and listening and helping them to figure out. Like, when my oldest is dealing with Doctor stuff, I go with her to most of it, and I've told her, I'll do that forever. I don't care. I mean, I know she can handle it, but I'm here to support you, yeah, just looking at test results with her and helping her then to figure out I should talk to my doctor about this, you know, giving her that kind of guidance so that she can be independent. My daughter with type one. I'm still decently hands on. She does everything on her own, but I do help with carb counts. I help her when she's high, trying to get her back down in range and get up in the middle of night and give her juice. I don't know. I guess I just do it a lot of texting so that when I'm not there, like if I'm at work, I actually changed. I didn't leave employers, but I changed my job a year and a half ago, and part of my reason for wanting to is so that I had a little bit more access to my phone, because I work in a school and I was more in a classroom before. Now I'm the secretary, so I have more flexibility to respond when they need something.

Scott Benner 47:43
So you've adjusted your life a little bit. But moreover, you're just telling the kids, like, Look, I'll be there for you as long as you need. Like, but you're actually going through things, which I think is important. You're not just like, like, oh, the doctor said this, then you just wander off and don't like, you're actually considering what's going on and trying to teach them at the same time how to think about it. Yes, that's awesome. Where did you figure that out? Like, did you have, like, a good parent or something? Well, I

Linda 48:07
did have good parents. Yeah, I don't know. I mean, I just, I think it's just me. I mean, I knew that I'm gonna support them and, I mean, I didn't go through hell stuff like this when I was a

Scott Benner 48:17
kid. But, yeah, you'd have anything at all growing up,

Linda 48:21
I had asthma,

Scott Benner 48:22
asthma and, oh, and the anxiety, the anxiety when you were younger, as well,

Linda 48:27
not as bad. I mean, it's not like I'm bad. I don't want to use that word. It's

Scott Benner 48:31
there. It wasn't as intense as it is now, yeah, I gotcha. Do you have an idea of what age that came on? High school time period was probably the hardest. Do you remember anything happening, like traumatic or like,

Linda 48:47
I moved between my freshman and sophomore year and changed high schools, and that was not

Scott Benner 48:51
easy. Like, your family just moved. There was no like, your parents get divorced. My dad

Linda 48:55
was a principal at a school, a really, really small high school that closed, like right before school opened, they decided to close. So then he didn't have a job. We moved, we were in New Mexico. Then we moved to Ohio to live with my grandmother, and then so I suddenly had to go to a brand new school where I knew nobody. Okay, so that

Scott Benner 49:17
was tough. You found that tough? Yeah, yeah. I'm trying to decide if all of this would be helped a little if your husband was a little more involved. Like, do you ever wonder, like, hey, like, it's fun that we've been doing it like this, but there's a lot going on here, buddy, maybe you need to, like, jump in

Linda 49:33
sometimes I think that. And like, he's fine. Like, if I'm not here, he's gonna take care of people, right? Yeah, if I, if I go away like I, I go away with my friends once a year for a weekend, he's going to make sure that he wakes up if she needs a juice, you know? Yeah, he's, he's going to make sure that everything's safe and taken care of. So I do appreciate that. Yeah. I think he just kind of looks at and thinks that I figured it out, it's all under control.

Scott Benner 50:06
What about the long term worry about the kid with the two antibodies, or the the impacts of the Crohn's? Like, do you conversate with him about that?

Linda 50:14
We do? I mean, I think he worries more about our our daughter with the type one, just because, I mean, her management is okay, but it could be better, yeah? And she's young, so she's looking at the here and now, what helps me with what I need in the moment, whether it's anxiety wise or whatever the situation is, and not really thinking about what my life be like in 10 years. Yeah, you know, yeah.

Scott Benner 50:42
She's not worried about a higher blood sugar and what it means when she's 35 right? Yeah, right. And

Linda 50:49
she, she, she has gotten better, but, and then you go to the Endo, we were last actually, at the end of in February. Her a 1c was 6.90

Scott Benner 50:58
that's not, listen, that's pretty great, not horrible, right? I hear what you're saying.

Linda 51:02
It could be better, and then the endo just says, Oh, you're doing so great. That's

Scott Benner 51:07
all they say. They say that to everybody, by the way, yeah, you could have a 13.9 and they'd be like, you're doing great, and anywhere in between. I don't think I've given a pretend magic wand to anybody and asked a question in a while, but like Crohn's type one, the knowledge that type one is coming. Which would you take away? If you could only take one away from somebody? Ooh, that's tough, because I have my answer. My answer is never what your answer is, but I'm still I got mine. I'm ready.

Linda 51:35
So if I'm dealing with what we already have right now, I'd probably take away the one make sure my middle daughter doesn't get it, because she's preventable. Interesting, right? Yeah, the other two are already in it.

Scott Benner 51:48
I always, I always love people's answers. I would do Crohn's. It's tough. Crohn seems the toughest to me. Yeah, I mean having, I want to be clear, I don't have Crohn's or type one diabetes, and nobody's telling me, I'm about to get type one. So this is all from a very academic point of view. I No one's ever said the thing I'm thinking so far. But yeah, that Crohn seems like, it just

Linda 52:11
seems terrible. It is horrible. Yeah, ideally, as she continues the biologic, she can get remission and being like, feel pretty normal, right? Yeah. But I know, like my mother in law, when we got the diagnosis for Crohn's, said, oh, you know, I know it's bad, but I think it's far worse to have diabetes. And honestly, I kind of thought I don't know about that, because we know that we can manage diabetes. You can feel okay if you're taking care of yourself, right? Yeah, Crohn's is kind of like, oh, I should not have eaten that. And now I'm in a flare and I'm intense pain. Little things can happen,

Scott Benner 52:50
yeah, it could last a week or more, too, right? When it first Yeah, definitely, yeah. It's funny. I almost feel like a hypocrite, because I am very much a person who I don't see any value in comparing people's struggles, I mean, but I was just, I asked, because you're the mother of all three, and I thought, like, What is your perspective on this? I'm assuming that you would, you know, try to use the magic wand to make two more magic wands, and then I would help everybody make them all better. Exactly, exactly. There's two people who already know what it's like to live with this and they're getting through it. If you could make a wish, you'd make a wish that if you could only impact those three people in those three things, that they the one person

Unknown Speaker 53:31
didn't get it, yeah,

Linda 53:33
I'm sure that they would think that's not fair, the two that are already dealing with stuff, right? But

Scott Benner 53:38
yeah, no, I mean, I can make, I'm sure they can all make a compelling argument for themselves. Yeah, they could. Yeah, well, that's interesting. Oh gosh. Is there anything we haven't spoken about that we should have? I don't think so. We're doing okay, yeah, yeah. You comfortable? I am good, good, good, good. I had to figure out there's you have, like, a little pause before you answer. I stepped on you a couple of times earlier until I figured out your pause. Some people pause because they have nothing to say, and some people pause before they speak. This probably sounds pretty academic to people, but pretty obvious. I got confused with your pause twice where I thought you weren't gonna say anything, but then I realized you were collecting your thought. So I apologize if I did that earlier, but it's okay. Thank you. How do you find out about the podcast?

Linda 54:22
When we were in the hospital at diagnosis, I don't remember who a nurse, social worker, somebody said, oh, there's support groups on Facebook. So I googled, or I went in Facebook and searched, and yours came up, and so then I found the Facebook group, and then the podcast, and very early. So it was super, super

Unknown Speaker 54:41
helpful. You with the Facebook group first?

Linda 54:43
Yeah, I was in the Facebook group first found out about podcasts. I think I kind of just started at the beginning, okay, before I realized that there were different series, and, yeah, and it was four years ago, so

Scott Benner 54:54
everyone should start at the beginning. First of all, because Scotty needs to download, but, but yeah, I just didn't know. Like the people's pathway to it. So she didn't, the nurse didn't specifically say, Go find Juicebox. She said, Go find support. Yeah, you googled and founded Facebook, or you searched in Facebook. I

Linda 55:10
think I went on Facebook and searched type one parent support groups. So it helped, because very early on, then I became more comfortable with using insulin and understanding how it worked, and understood what the doctors were saying, and so it made a huge, huge

Scott Benner 55:27
difference. That's awesome. That's really great. And you actually made it from the Facebook group to the podcast, which is, by the way, the most difficult transfer. Hold on a second. My wife is overseas at work. Hey, Kelly. I'm recording the podcast. You can say hi to Linda real quick, and I'll call you back. Quick, and I'll call you back in two minutes. Okay, Hi, Linda. Hi. Linda said hi, but you can't hear because I have here headphones on, so I'll call you back in a minute. You want to check on art, and she feels nauseous and dizzy right now from the pain. I'm going to get down to her in a second. Bye, my wife has had to travel so much for business lately that as she left, I was dropping her off at the airport, and she's just looked at me like she was 10 years old. And she's like, I don't want to do this. Just want to be home. I was like, just get on that plane. We're almost done. 10 more years. Will retire. That's the first time it was ever heard Kelly's voice. It's interesting. Yeah. Oh, well, you're the first one. Linda, I'm sorry. The hardest translation to make is from Facebook reader to podcast listener. Okay, like, so it's hard. It's I used to think about like. I used to think I had like an ecosystem, which I do, but like the Facebook group and the podcast, but I used to think of them as like one thing. It took me a while to realize they are two completely separate entities and and that there are certain people who prefer audio and certain people who prefer reading. And right there's not as many crossover people who prefer both, who like both. So anyway, it's always interesting to me how people find their way to the to the audio.

Linda 57:05
I was not a podcast listener, yeah, so I think yours might have been the first podcast I ever really listened to. But yeah, it was good, and exactly what I needed, cool.

Scott Benner 57:15
That's awesome. I'm glad to hear it. Yeah, I appreciate you sharing this story too, and I want to just check one more time, because I took you all over the place. Did this go any way, the way you expected

Linda 57:24
it to? Or well, not entirely, but I got what I had in mind.

Scott Benner 57:29
Okay, if I put you in charge of this, I made you the producer, what would I have asked you about and stuck to,

Linda 57:34
I don't know. Oh, that's an interesting question. I got, like, I wanted to talk about the diagnosis and trial net. There's so much controversy about trial net that I see in the Facebook group that that was part of, I really just wanted to share our experience, because it's been a positive experience. What

Scott Benner 57:49
do you think the controversy is? What people just talking about? I don't want to know versus I want to know whether or not you should know or not. Well, I mean, you're an anxious person, and you know, is it valuable knowing?

Linda 58:00
Yes, I'm very thankful, because we can either find those prevention methods and delay, or when it's inevitable, we're going to be able to walk into it slowly. I

Scott Benner 58:12
have to tell you, that's how I think about it. And I think it's interesting that a person who finds themselves being anxious thinks the same way, because I would think that the again, I've said now, said academic like, five times, but the academic argument against that would be like, well, if I'm an anxious person, it gives me more to be anxious about. But I don't think that's true at all. Like, once your one kid's got type one, your other one's got a different issue that you know also seems inflammation related, right? Crohn's right. You gotta start looking at the third one thinking, like, oh, like, something's gonna happen. And then there's that anxiety, the never knowing, right?

Linda 58:46
Am I right? Yeah, no, yeah, I think I would worry anyway,

Scott Benner 58:49
yeah? So now every little thing, yeah, at least now you have good information. If you're going to be concerned about something, it's not and then it's not just mindless worry, it's actual thoughtful planning, right? Yeah, that's all so you would tell people do it? Yes, I definitely would. All right, there you go. I like, by the way, when I asked you, like, Did this go the way you expected? You said, No. I said, Well, how should have gone to you? And I don't know, reminds me of, Have I ever told you guys how I paid for my wife's engagement ring? I'm not sure. I don't think I have. So we got married without an engagement ring because we were poor, and actually my wedding band and her wedding band, I think we paid $50 for both of them in our friend's living room because their friend was a jeweler. I'm making air quotes. It's possible My rings are stolen. I'm not sure exactly, but I wanted to get my wife like a real ring, but we were married with just bands, and then by the time she was pregnant with Cole, we'd been married for four years, maybe, and we were nowhere near getting like, you know, like an engagement ring, right? And I we, you know, planned for me to just. Stop working, but I had this like enough of a skill from my job that I thought if I could just get two, maybe three freelance gigs after I'm done working, I could pocket all that money and buy her a ring with it, right, right? I ended up doing that. And by the way, at that point in my life, I was doing graphic design, not well for a credit union, okay? But, you know, I did. I picked up like three jobs, and I at one point thought, why? Maybe I'll just keep doing this on the side. Like, you know, it's a little extra. I did three jobs and I made, if I'm remembering correctly, I made $10,000 over those three jobs. Like, it was like, months of work, and, you know, it was fine, like, what? But what I noticed over and over again, because now I was doing designing for different people, not just like the guy I used to work for in the department I was in, you get hired based off of your samples. And people would say, Oh, I love what you do. I'd like you to do something for me. And then you'd give them a, you know, say, Here, here's my vision for this. They go, Oh, no, not that. And then I'd say, oh, okay, then what? Then? And they go, Oh, I don't know, but not that. And I remember sitting in a meeting once where I actually had to bring Cole in a carrier. Okay, so I want you to imagine I've got coal in a carrier. I'm designing this postcard for this, like bank or something like that. And I pull it out, it's exactly what they asked for. I am telling you, it is exactly what they asked for. And I put it down, and the woman goes, no, that's not right. And I said, it's exactly what you said. You said you wanted this here, this here, like this. You wanted this larger than that. This is exactly what you wanted. And they were like, yeah, no, that's not right. And I said, Well, what do you want? She goes, I don't know, but not that. And I remember in my mind thinking, you mother, and like, I was like, and it's when it hit me, like people don't know what they want. They just know what they don't want, right? Anyway, that's how it made me feel when you when you said, No, this did not go the way I expected. How should it have gone? I don't know. No, no. So anyway, I promised Linda I wasn't going to curse. And then that went right out the window. Do you curse at all? Linda? Would you like to curse at all? I'll bleep it out. I don't. No one would know if you did like I'll make sure it gets bleeped out completely. This is completely. This is your one chance to say something terrible out loud. No one will even hear it. No, that's okay. Oh, that's so lovely. You're lovely. Hold on one second for me, you were terrific. Thank you. Yeah.

I'd like to thank the blood glucose meter that my daughter carries, the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juicebox and don't forget, you may be paying more through your insurance right now for the meter you have then you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now, and links at Juicebox podcast.com to contour and all of the sponsors. Thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox the epic episode you just enjoyed was sponsored by the twist a ID system powered by tide pool. If you want a commercially available insulin pump with twist loop that offers unmatched personalization and precision for peace of mind, you want twist, twist.com/juicebox, I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast.

Hey kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy? The private Facebook group for the Juicebox podcast. I know you're thinking, uh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juicebox podcast, type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in, but make sure you're not a bot or an evildoer. Then you're on your way. You'll be part of the family. The podcast contains so many different series and collections of information that it can be difficult. Will define them in your traditional podcast app. Sometimes, that's why they're also collected at Juicebox podcast.com go up to the top. There's a menu right there. Click on series, defining diabetes. Bold beginnings, the Pro Tip series, small sips, Omnipod, five ask Scott and Jenny. Mental wellness, fat and protein, defining thyroid, after dark, diabetes variables, Grand Rounds, cold, wind, pregnancy, type two, diabetes, GLP, meds, the math behind diabetes, diabetes myths and so much more, you have to go check it out. It's all there and waiting for you, and it's absolutely free. Juicebox podcast.com, the episode you just heard was professionally edited by wrong way recording, wrong way recording.com.

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