Scott Benner 3/7/25 Scott Benner 3/7/25

#1454 Formerly Terca

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Cici, 30, has managed T1D for 17 years. After overcoming her needle fears and diabulemia, she switched to OP5 and turned her health around.

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

Scott Benner 0:00
Welcome back, friends to another episode of The Juicebox Podcast.

Cici 0:15
My name is Ceci. I'm 30 years old, and I'm from Mexico, and I've got diabetes for 17 years now,

Scott Benner 0:23
nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice. Box. Are you an adult living with type one or the caregiver of someone who is and a US resident? I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa. This is the way t 1d exchange.org/juice box. This episode of the juice box 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 mis Bolus is or miscalculated carbs thanks to meal detection technology and automatic correction doses, learn more and get started today at Medtronic diabetes.com/juice box. Today's episode of The Juicebox Podcast is sponsored by the ever since 365 the one year where CGM, that's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with, with the ever since now, app No Limits ever

Cici 2:16
since. My name is Ceci. I don't know if it's easy for you to say. CC, that's fine. I'm 30 years old, and I'm from Mexico. I'm from Korean, which is a small town in the north, but right now I'm living in the South, near Cancun, and I've got diabetes for 17 years now. Okay, Ceci, yes. Like that, perfect.

Scott Benner 2:39
I can do that, probably okay. You would think I could accomplish that, right? 17 years. How old are you now? 30? Oh, okay, you're over halfway. Then, yeah, yeah, you've had it longer than you haven't had it. Do you remember being diagnosed?

Cici 2:57
I do. It's actually kind of a weird story. I think I don't think I've heard something like that. Go ahead, I've always had problems with my weight. You know, I've always been a little bit overweight, especially when I was little. So about a month or two months prior to being diagnosed, I was on a diet with my sister and my mom, so we were all trying to lose weight, and always I would be the one losing like very little weight, like grams. I don't know how to convert to pounds. I'm sorry, that's okay, but they would be losing like one kilogram or a kilogram and a half, and I would be losing like 6600 grams, right? So very little, but consistent. And then I finally reached my weight, and I went into the like, maintenance stage of the diet, and I went crazy, like they let me eat pasta, and I would go into the fridge and take, like, cold pasta and eat it like crazy. I didn't know if it was because of diabetes at that point, but I was eating like with like crazy. I couldn't stop myself. It felt amazing when I ate, and then I felt terrible, right?

Scott Benner 4:09
But were you still losing weight while you're eating like that? I didn't

Cici 4:13
know that, like, I didn't it was a week, so I didn't know yet, but I was eating like crazy, and it was like, No, it was like, two weeks from one wing to the next one, right on the diet. So I would eat like crazy. I was really moody, but I was also 13, so my mom thought, like, she's a teenager, she's just going through stuff or whatever, and my mouth was smelling like, she would say, like, fruit, like, like, fruity, right? And she would send me to the bathroom, like to brush my teeth with. How do you call it? Because, like,

Scott Benner 4:45
baking soda. Yeah,

Cici 4:47
baking soda.

Scott Benner 4:48
How do I get that? It was awesome.

Cici 4:50
I don't know. You're awesome, right? I just lost the word for a second there. And she would make me like gargo with baking soda and things like that, so that it would stop. She would not. Believe that I was brushing my teeth, she was going crazy, and I was going crazy. I was so tired. But then two weeks later, when I went to the next weigh in, I had lost four kilograms. Okay, so that's like eight pounds, I think, okay, something like that, like, for a person who was

Scott Benner 5:20
not losing anything. It's actually, it's just about nine pounds. So, okay, so nine pounds two weeks,

Cici 5:25
and they actually called my mom and they were like, like, they set her aside and asked her, like, are you feeding her? Right? Like, don't stop feeding her just because she reached her weight. And you're like, like, that she's been now, or whatever. And she was like, no, no, she's eating. And she's eating like crazy. We didn't like click then yet, after, I think it was a week later, it was Father's weekend, Father's Day weekend, and my parents took me out to dinner because they were concerned with my behavior and everything. And while we were sitting there, I don't remember what they said I was like in a haze, a diabetes phase. I guess the I would order a pink lemonade, right? And it was a refill, so I would drink it, and I would get another one, and I would drink it, and I would go to the bathroom and get another one. I think I drank like 10. So at some point, I don't know what my mom was saying that she just like, looked at me and was like, shit. I think I know what's happening, right? Is one of my my nephews, he's got diabetes. Oh, okay, and and one of my cousins. So she took me to my nephews house. They checked my blood sugar. It was high in the glucose meter. Of course. We got to the hospital and I got admitted. Right away, my blood glucose was, I think, 1100

Scott Benner 6:52
Yeah, I bet you, after all the pink lemonade, right? I

Cici 6:55
did. I didn't stop. So you can imagine that. I don't know what my a, 1c was, so I'm not sure how long I had it, okay, like that, but it was 1100 at the moment, and they were shocked that I wasn't like past that conscious. Yeah, right. And yeah, that was it.

Scott Benner 7:10
How long do you think that whole process took?

Cici 7:12
I think it was like a month. Okay, probably so

Scott Benner 7:17
pretty quickly. And your mom finally figured it out. She ever tell you what struck the chord. Was it the drinking and the peeing that got her or,

Cici 7:24
yeah, like she she just didn't connect all of the of the dots until that moment. So she knew I was moody, but she thought it was because I was a teenager. She thought I was eating like crazy because I was on a diet and I finally had, like, right permission to eat, right so I don't know

Scott Benner 7:41
Heck of a diet if you were, I think you're double fisting cold pasta at the refrigerator. Yeah, she, she was probably amazing diet. She's like, I think we went too far, right? So I would love that. How much did you actually lose from the diet? And then I

Cici 7:57
think it was like eight kilos. So,

Scott Benner 8:01
okay, all right. So maybe, like 1617, pounds you lost from the dieting. They were like, Okay, that's enough. You did it, right? And then right about that nine, then probably the diabetes was starting, right, okay, all right, what is care like in Mexico versus what you hear on the podcast from America at other places?

Cici 8:20
I believe it's similar, like in like, the stories I've heard from before, like 1020 years ago, I think they're very similar to what I got 17 years ago. I just think here in Mexico, we're a little bit behind right now, like currently

Scott Benner 8:37
behind on technology or medication, or

Cici 8:40
medication, not quite, but I think technology and the the availability of technology here, so we don't have many options. There's only meternic. And at some point the animal, I started with that one, okay, but there's no omnipotent, there's no t slim,

Scott Benner 9:01
what about the direction from doctors? What are you told?

Cici 9:06
I have to tell you that when, when I was in the hospital, I think I was there for a week, nobody told me I had diabetes. So they were just like coming in and injecting me and leaving, you know, and nobody told me what happened to me until I got home when my mom told me. So it's not like with you guys, that I've heard that you go to the hospital and then you stay three days or whatever, and you get a little bit of education. I don't think I got that.

Scott Benner 9:31
Well, Arden was diagnosed when she was two. She's 20, so that was 18 years ago, so it's probably the year before you and she was in the hospital for five days. Okay, so, I mean, but no, like, doctor spoke to you and said you have diabetes, but they told your mom that, though, right. Okay, yeah. Is that cultural? Do you think when you think of a CGM and all the good that it brings in your life is the first thing you think about? I love that. I. Have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox Podcast is sponsored by the ever since 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems the Eversense 365 is the only one year CGM designed to minimize the vice frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping, you can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at Eversense cgm.com/juicebox, one year, one CGM. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email and the phone rings the house. It's like, ring. You know how it works? And I picked it up. I was like, hello, and it was just the recording was like, us. Med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it? Push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like, a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it us. Med.com/juice, box, or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem, freestyle, they've got all your favorites, even that new islet pump. Check them out now at usmed.com/juice box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox podcast.com to us Med and to all the sponsors.

Cici 12:18
I think so a little bit, because I see, like all the community you guys have around type one diabetes in the US, and I don't think we have it here. I think there's a little taboo, even though it's different from type two, and they shouldn't have taboo for type two, either, like, we don't like to talk about it, or we don't like to share that much. So I don't have a lot of friends that have diabetes, or I don't know people who have it, or I do, but I don't speak to them a lot, and we don't talk about that. We talk about like our life. Is it possible?

Scott Benner 12:50
You know, people who have diabetes who just don't talk about

Cici 12:54
it? I don't think you don't don't like, because we do like when someone has something, you kind of know, they just don't say it

Scott Benner 13:02
back channels. We know about it. Okay, all right, your ancestor tells you about it, exactly. Okay. So when you, when you're first diagnosed, you get needles, right, right? You know, in the stuff that you sent me, you said you have a fear of needles, because Arden does, and I don't, we don't talk about it a ton, but hers is, like, aggressive, and I'm wondering what it's like for you

Cici 13:27
right now. It's like, I can do it, no problem. I can actually look like when they're taking blood and whatever. It's fine, but it was very, very bad, like, I would be the kid in in the pediatrician's office running away from the lady that was going to inject me, or whatever vaccine they had to put on me, right with my pants down. So I did. I did have a very big fear. I actually have a funny story about that. When I was 12, right before I was diagnosed, I had an operation on my knees, so it's like a corrective operation, but my dad gave me that cell. Thank you, dad. Your legs are a little bit, I don't know, wonky, and you have to get an operation in the inside of your knee. You get some staples put in, okay, on the growth line of your bone, so that your legs don't grow on the inside, only on the outside. And you get, like, I don't know, they get straight or it doesn't bow your legs, yeah, exactly. Like, it's, it's, it tries to bow them the other

Scott Benner 14:28
way. Okay, so you have a wonky knee, is what you're telling me, yeah, both, both knees. You're trying hard to have your episode called wonky knee. I'm just letting you know we can try that. Yeah, well, we'll see where we go. Okay, so you have this surgery, right?

Cici 14:41
So I have the surgery, but I have my sister had it a year before, so I knew what was coming. My mom watches a lot of base anatomy and, er, so I also thought myself a medical professional, right? So I was in the hospital. I was getting ready. They had to put the the IV right on me, and that was terrible, but it was. Was like, Okay, I had to do it. But I knew they were going to try and put an epidural on me, and I knew what that was, because of great anatomy and, er, and it's like, I'm not like, there's no way, no way in hell, right? But I was 12, like I was a kid, yeah, when I was in the in the operating room, they were like, Okay, we're going to do the epidural. And I was like, oh, no, no. My mom said you could do the little gas, you know, like, the gas, like, put me to sleep. And she was like, really? And I was like, yeah, she said it was fine. And she was like, oh, okay, fine. So they actually made me, like, go to sleep completely. They didn't put the epidural on me. And, like, halfway through the surgery, they went out and talk to my mom. They were like, you know, she should have an epidural because it's going to be really painful later. And she was like, why didn't you put an epidural on her? And she was like, she said you didn't want her to. And she was like, do it right now. Do it right now. You're never going to do it.

Scott Benner 15:53
Not too long ago, you wouldn't tell her she has diabetes, but now she's making medical decisions about anesthesia. Interesting.

Cici 16:00
And I didn't have diabetes, then

Scott Benner 16:03
you were just, you just tricked them, right? I don't need that. It'll be fine, right?

Cici 16:09
I'm gonna be fine. Don't worry. Like, I don't know how any doctor believes a child that way. Yeah. I

Scott Benner 16:15
mean, okay, yeah, it's a tough call to let a 12 year old make a decision about an epidural right in the height of your needle phobia, like, if I come at you with one, what's your reaction to it?

Cici 16:25
If it's a really big needle, it's bad. The size matters. Yes, okay, so a small, a small needle, like diabetes needle, I don't care. Like an insulin needle is fine, right now, I look at it and I whenever I have to inject myself for whatever reason I do. It's like, I feel like it's a mosquito bite, right? Okay, looking at them and them being big, and especially if they're going into my arm, you know, like a vaccine or something like that, that terrifies me. Okay?

Scott Benner 16:53
But do you run from it? Do you defend yourself?

Cici 16:57
Yes. So five years into my diagnosis, I had been a diabetic for a while, right? And injecting myself for a while, I had to go for the flu vaccine, and I don't know why. Like, that year, I was petrified, and I was with my sister, my mom and my grandmother, and it was almost my turn to get vaccinated. So I was like, Oh, I'm gonna go to the bathroom, right? And I was like, 17 year old. I was old, like I wasn't a kid, right? So I went into the bathroom, and I locked myself in. They had to open the door with a key, and they had to pull me out for my feet to inject me. Okay, so it was ridiculous, but I don't know what happened. Like it came over me. I It came back. Like, right now I'm shaking, like it's just remembering it, yeah, I don't know. I

Scott Benner 17:43
don't I mean, it would be Arden story to tell more completely, but to see her reaction to it is this, it's, it's really, it borderlines on insane, and she knows it as it's happening. Yeah, you know it. She's like, first of all, it hurts. She's not good with the injection part. It hurts, right? But I know this is silly, like, I know, if you like she, she uses the word I'm disappointed in myself for not being able to be okay with this, you know? And I tell her, I'm like, You shouldn't be disappointed in yourself. It's not it's not embarrassing. Some people just have a needle phobia. You You really have one. She said she's had it her whole life, but she didn't really start fighting back about it, until she was at a certain age. And I remember that moment I've said to before, like, if she was Spider Man, she would have crawled right up the wall, like she just backed into a corner and just kept going backwards and somebody came at her. I just thought it was something that kind of appeared out of nowhere, but she remembers it as something she's always dealt with, but just, you know, is old enough now to just, like, voice her opinion about it, act on it. Yeah, she had to get a an injection recently, where my son had to hold her hands so that, like, she wouldn't defend herself against the thing. It's what she asked for. She's like, I need someone to hold my hands so that I don't swat it away. She said, Because that that will work, that worries me too. I'm not going to be able to stop myself, and I don't want to hit the needle, but I want to do the thing so, like, this is all happening, and then, and then she is just like, inconsolable. And then, as it's happening, she goes to, like, she wants to bite down on her own hand, and, okay, bites my son instead. Just tears and fear and everything. And then it's over chaos. He goes, what'd he say? He goes, she bit me. And she's like, through crying laughing now, and she goes, I'm so sorry. It's just the most sincere apology you've ever heard in your life. She's like, I'm so sorry. I didn't mean to I'm sorry. Everybody was okay. And then she starts laughing, but she's laughing through tears, and I'm like, as soon as the anxiety of it was gone, she was just okay. It was really, really something anyway, terrible, you know?

Cici 19:47
Yeah, it beats logic. I don't know. I don't know where it comes from, but it feels like, on the inside, it's oh my god, terrifying.

Scott Benner 19:52
Yeah, no, I imagine okay. So you, you start to manage the way you do. What are your goals as set by doctors and do you. Set your own goals, I

Cici 20:01
don't. So my goal set by doctors were the normal ones, like 180 like 80 to 180 or something like that. But I started with humolog Atlantis. I believe at some point, yeah, and my mom had to give me all the injections. I was incapable, like I couldn't. So she would have to sit me down. I would cry every time. And it was, it was painful, I think for her more than for me. Yeah, right now that I'm an adult, and I know like that must have been terrible for her, I did find a spot in my stomach that made it really easy for me to get injected. Like I didn't feel anything, so I would always inject there until I got a little, like, and plus, and everything. I'm sorry, gross. I know it helped me, like, I could do it there, and I was fine. And I think I did that for like, a year, a year and a half, and I was in a diet, specific diet. It was like an exchange diet, but I wasn't using regular and mph. So I'm not sure why I had an exchange diet. I think it was just like the standard for for care, and people didn't really know why they were using that like it's not logic. Now that I know about mph and regular and whatever, but I did have a limited amount of carbs for a while, and life sucked. I love carbs, right? I didn't have like, goals set out for myself like I was a kid. I felt like a kid more when I got diabetes. I think I didn't feel like empowered. I felt a little bit,

Scott Benner 21:36
I don't know, terrified, yeah, I guess, like, you needed somebody's help, right?

Cici 21:40
And I think my mom and my dad, like my dad, he was devastated. I think, like, I saw, like, something change in our relationship there. And I think it was because he didn't want to see me like that, I think, and my mom, she took, like, everything onto herself, but she also wanted me to take care of it, so I was just like, checking my, my glucose, like every four hours and before meals and whatever. But I didn't really care there. I know you speak about it a lot in the podcast, like,

Scott Benner 22:13
whatever it was, it was, you didn't make adjustments or anything like that. You were just checking, yeah, kind of right. So she wants you to be able to handle yourself and take care of yourself, but at the same time, she wants you to not feel like it's all on you. And then you try to find that balance between like I'll do it and make sure it's okay, versus she'll do it, but know how to do it, but I don't know. I think the secret to a lot of this is that when people are listening, they want somebody to tell them, like, do it like this. This will work, right? And that's just not the case. Like everyone is so individual, and the impacts of how you deal with diabetes and just your health in general, or whether you're focused on something or not, and all the other things that go into it are so person to person, for the person with diabetes, but also for the people around them. Like, right? Like your your dad has one, you know, reaction, your mom has another one. You're having a third. And now, you know, right to come along and say, Oh, tell me the right way to do this. There's, you know, I don't know. It's not clear. It's tough, you know, and it takes a lot of effort and time that you have to put in. Even yesterday, it was not lost on me that in the middle of Arden having this problem yesterday, we were able to manage it and work through it, because I work from home even, like, just such a simple thing, right? Like, because if I'd have gotten up in the morning and that problem existed, and I was like, I'll be home at five. And she would have ignored it all day, you know what I mean, and then I would have gotten home, I'd have been tired and hungry and still had to do a bunch of other things, and it just wouldn't have gone the same way. So it's easy, like, it's easy to say to somebody, you know, like, all the right things, but it's another thing to have the time and the heat and the energy to to put it all into practice, I guess. But right? Well, tell me like, how did you feel when you saw those numbers, when you tested? A little anxious,

Cici 24:07
of course, but I think I was scared of getting low, so I didn't like, we didn't have this idea that when you left the endo you could just adjust your numbers. Well, I didn't get that idea, so I was just injecting my basal, and it was clearly wrong a little bit. I so I did have a few episodes of three or four convulsion episodes at night.

Scott Benner 24:35
You had some C you had some seizures overnight, right? You think it was because you were using too much basal?

Cici 24:40
I do. Okay, I do. So that was sucky for my sister, because she was my roommate, and she didn't love it. And we don't like here in Mexico, that's an important thing. Here in Mexico, we don't have glucagon. Oh, really, still, still, and there's no glucose tabs from the pharmacy. Like, I have to buy them in the US.

How does that work? How do you get glucagon? You don't, you don't have it. And, like, I have, I have it because I go to the US and

pay cash for it. No, I do. Like, I'm really lucky. And my parents, right before I got diabetes, they swapped our insurance, and they got a really bulky plan that actually covers me here and in the US. So here it's called whatever, and in the US, it's Aetna. So I get covered. I'm looking here. I didn't realize that, yeah, there's no book of them. You can get it at the I think it was last week or two weeks ago that my Endo, she's young, and she has Instagram. She put up a story about vaccine. How's it called the one from the No,

Scott Benner 25:49
yeah, yeah, the nasal one, the powder, right, right, right. And she just

Cici 25:53
put up, like, a picture. And she was like, Do you know what this is? And I was like, yeah, that's COVID gone. Where did she get it? Like, is it available in Mexico or what? I'm not sure. I don't know where she got it. I'm gonna see her in a few weeks. I'm gonna check that out. But right now, I have some glucagon for myself, and I got one for my cousins well, because he doesn't have it, and he also lives here in Mexico, and I think it's important,

Scott Benner 26:17
yeah, it's very it's so, I mean, that's crazy. It's just not right. Like, why would it matter of insulin,

Cici 26:24
right? Yeah. Like, there's, there's nothing. Like, my mom would treat me with, uh, jam. I hate jam now. Like, I can't stand it.

Scott Benner 26:33
I think, I think that's everything. Like, everything you can get sick of my my father wouldn't eat chicken, and, like, he asked them why. And his dad had a job where at the end of the week, if the the place he worked did well, this is going to sound very old timey to people, but if the place that he worked at did well, you got sent home with a live chicken. Okay, right? And then it was like a bonus. At the end of the week, he'd come home and toss the chicken over the fence into the yard, and then my grandmother would go outside catch it and, you know, break its neck and pull the feathers off and make it for dinner. My dad did not chicken, yeah, yeah. I see why. You might not like Jim, yeah,

Cici 27:09
but he was a very, very good worker. If he was getting chickens all the time, didn't get a chicken

Scott Benner 27:13
every week, but apparently it ruined my father for chicken eventually. So, right, that's interesting, isn't it? It's

Cici 27:19
counter intuitive, like, I don't, I don't know where it comes from. It's crazy. Just

Scott Benner 27:24
that doesn't feel like a thing that should be difficult to accomplish, right? How many people would type one live in Mexico? Even, you know, we can no

Cici 27:32
but my husband, yeah, I can find out. My husband makes this joke, like, in my town, like, where I'm originally from, I know a lot of diabetes. He's like, What is going on your town? Like, why are there so many diabetics? I'm like, I don't think it's my town. I think it's just because it's small. We all know everyone's live. You're aware of everybody. Yeah, exactly. So I know all the diabetes in my town, but I'm not sure

Scott Benner 27:55
I don't have. This is a two year old article that's type two diabetes. That's not helpful.

Cici 28:00
There's a lot of type two diabetes in Mexico that I can say. Is that

Scott Benner 28:04
food related? Do you think? Yes, yeah. I've interviewed a few people cultural, yeah, yeah, who have the same cultural background. And they'll say, like, just, just what the food is, and it's and every meal and everything. And there's a guy that was on once that talked about it, just so eloquent about it. Almost 90,000 people live with type one diabetes in Mexico, but almost 60,000 additional people would still be

Cici 28:29
Yeah. I mean, maybe it sucks

Scott Benner 28:32
to say, but like, is there not not enough people there for them to sell the thing? But then the other side of it is like, if that's how many people there are. You wouldn't have to really make that much of it to cover everybody. Either, you know, interesting. Yeah, it's weird. I'm sorry. So you are growing up with diabetes through school, into high school, as you go to college, yes, yeah, into college, and mostly between you and your mother. Your dad never got involved, like he

Cici 29:05
would go to the doctor with me. He did try and get me to an a doctor in the US at the beginning, I think, when I was a year into diagnosis, and that's where I got my first glucagon. And I have a really funny glucagon story, because, because we don't know how to use it, we got the big red box right here, original one. And I was having a seizure, and my mom was going crazy, and my dad was next to her, and she was like, please, like, hand me the glucagon. And she just, he just handed it in, and he put it in my leg, and he never mixed it up, a needle, right, right? So I didn't get anything. And we lost the only Bucha one we have. How did

Scott Benner 29:44
you get out of that seizure? Jam with

Cici 29:46
jam? Yeah. So a jam all the time. Yeah. I hate jam.

Scott Benner 29:50
You remember what kind grape strawberry? No.

Cici 29:52
Strawberry. Strawberry. Yeah. Gotcha, yeah.

Scott Benner 29:58
I know. Yeah. I wonder how many other things. Things people are are being put on. Well, yeah, just like, how many kids have grown up saying, like, I don't know, I never want to see another bottle cap in my life. Or, like, you know, like candy that they had one too many times or something. I mean, it makes it makes sense. So you went to all that trouble to get a glucagon. And then when, when push came to shove,

Cici 30:18
we lost it. Yeah? I like, I remembered the story with Arden, when you guys gave her the little jelly thing, right? And you didn't have to use it. So I think it was the same thing, like, but with, damn, right? Oh

Scott Benner 30:29
my god, but, yeah, the glucose gel would come in a tube, like an icing tube. And I have one like that, yeah. And then real one. I opened the cap, but didn't pull off the foil seal, and when I squeezed it over her mouth, somehow the foil seal was stronger than the back corner of the tube. So this pin hole pops in the back corner of the tube, and I'm basically like, I mean, just decorating the ceiling of this hotel with this just laser beam of glucose gel. And as it was ridiculous. So then I looked at it and I saw, like, I didn't pull the thing off, and then instead of pulling it off, I just turned the I just turned the tube 90 degrees.

Cici 31:10
God, yeah, good problem solving.

Scott Benner 31:12
Well, how do you manage today? You have goals and outcomes now. So where did you come up with goals and outcomes for and how did you how did you figure out how to do it.

Cici 31:20
Okay? So about, I think it was like a year ago, well, I got married, like three years ago, I started thinking about kids at some point, right? And I was like, I don't want to be in the situation where I want to have kids, but I have to do all this work beforehand. Like, have to wait. So I said, I thought, I better start doing the work now, right? I wasn't really bad. I had a Stephanie 1c so it was not bad, but it was not good. And I started looking on the internet for options, and I saw things like a pancreas, something about ginger, Viera, and I saw your podcast, it was listed, and I was like, I don't want to listen to a podcast like, from the father of someone with diabetes. Like, that's not for me, because I have this idea of my mom, like my mom, whenever she would tell me something, like, no, should be a better manager. You should do this or that. I feel like I'm a lot like Arden. In that sense, I heard an episode from her, I think, yesterday, that she hates being told what to do, so I do too. Whenever she would tell me something I would do, like the opposite, or wait and do it myself later. So when I saw it was like from the father of someone with diabetes, like, No,

Scott Benner 32:34
I don't need I don't like that, by the way, she told me the other day. I said, Are you taking your vitamins? She goes, No. And I said, why not? She goes because you told me to

Cici 32:42
right? That's like, okay, yeah, that's me. That's me. I don't know why, but it's just big headedness. I guess you intersect

Scott Benner 32:49
the podcast, but the setup seems wrong. Like, did you then think, well, I'll go find a podcast from a person that has type one. Instead,

Cici 32:56
I started reading things like, pancreas, okay, one of the things it said was that one of the elements for better control was attitude, right? And I thought, right, like that. It's seems terrible. I felt like really bad about that, because it really was my fault, like my attitude. It's all wrong. I was a kid, well, a teenager, when I got it, and I was really take headed like that. So I didn't want to, like, investigate or research or read or anything. But right now, I'm a completely different person, but I still had that attitude kind of, of course, diabetes, I just like, flipped a switch and said, so the thing you have to change is your attitude, right? Like, I had a pump, I had a sensor, but it was a libre, the first one here in Mexico, we only have first one. So I had the tools. I just had to change something. And turns out it was my attitude. So with that attitude change, I was like, Maybe I should listen to the podcast. I'm like, not care if it's the father of someone with diabetes instead of someone with diabetes. Right? Interesting

Scott Benner 34:00
route to make that decision that is really interesting. Yeah, yeah. And why can't they send you the libre three? What the heck it's like plastic in a wire, right? Just do it, right? I don't understand. Okay, so, so you find it, go, nah, that's not for me. Then you read a book, and the book says, Hey, maybe you know you should just have a better attitude about a loss. You're like, you're right. And then you actually had a moment where you were sitting in your home and you thought, I didn't give that guy with the podcast enough of a chance. That's where you switch. Let's

Cici 34:27
give him a chance. Yeah, exactly. It was just like that. So I looked and I was overwhelmed with all the episodes that were available. I think it was October of last year, so, okay, about a year ago, but I saw that you had the pro tips. So I was like, I'm going to start with the pro tips. Makes sense, right? And I really loved, like, your your whole thing with Jenny, she seems really nice. And I listened to them all, I think, in a week, and I would tell my husband, like, you have to listen to them, because by that point, he wasn't very involved. Mm hmm. My my care because of the same thing, like my attitude. I didn't want anyone like hustling me and like bothering me with it. But I did switch my attitude towards that as well. So I told him, like, you should listen to it. It's really good. You're always asking if someone doesn't like you, my husband, he doesn't like me. He doesn't like you that much. He likes your episodes, but he doesn't like it. That's fine,

Scott Benner 35:25
as long as he listens. I don't really care, right, right?

Cici 35:29
I think it's because, am I not manly enough for him? No, I think you remind him of himself. Oh, really interesting. So there's, there's a saying in Mexico that says, look at the Chica. So what you hate, like, is what you have, what you hate in someone you have, so

Scott Benner 35:45
your husband's awesome, right? Yeah, that's great. And it's a shame you can't get over that, right? Isn't it funny? Like the idea of I mean, honestly, the I've gotten a ton of different reviews over my time. There's one right now, this person definitely hates my guts, but the one that sticks with me is being both amusing and really, like, I love it. Is that one, like, I don't like that guy, but I do like this podcast, yeah, right. Like, I like what it says, but I don't like, Oh, awesome. That's great. Because I feel like, you know, it's almost like, it's like, that picture I had of you going, Oh, do I have to go, like, give a guy that made a podcast a second chance like, I love picturing in my head someone picking up their phone every day and going, Oh, this looks really interesting, just

Cici 36:29
I have to listen. Oh, my God, hey, wasn't it my husband? Maybe,

Scott Benner 36:36
trust me, it's not the only one. The truth is, is that I can just be me, right, like and do this thing the way it occurs to me, and some people are gonna like and some people aren't. And I can't go bending to everybody's will or, um, then it's milk toast and it's then nobody will like it, and, and I'm not gonna do the big like, empty headed, say the stuff that everybody else says. So it doesn't offend anybody. Thing like that doesn't make any sense to me either, so it's impossible. Yeah, what am I gonna do? But nevertheless, tell your husband. I said hello, and probably okay, so you listen to the Pro Tip series. Is it like a, like a light over your head moment, or does it come slowly to you?

Cici 37:19
No, it is. So I started listening in October, and by December, so it was mid October, and I had an A 1c of 771, and by December, after I listened to all pro tips and a lot of episodes, my my a 1c was 6.40 wow. So I hadn't even gotten the three months, you know. So the only the switch from that month and a half, it made my a 1c drop, almost point. Wow, good for you. And that

Scott Benner 37:49
was Bolus thing, counting your carbs better, got your settings right. That's pretty much it, right,

Cici 37:54
right? I had this thing, like, because of my attitude, I tell you, I would go to the end though, and they would tell me, like, you're killing yourself, you know, typical gear tactics, and they would switch my basal. But I knew the problem was my Bolus, right? So I would, I would keep my basal like they told me, like the switch and whatever. But I knew I had a bigger basal than I needed. So whenever I would put on my carbs, they would tell me to put, I don't know, a ball Bolus of five units. And I was like, no, no, let's do one, because I knew I had a lot of basal behind that, right? Yeah. So I never knew my real car, I didn't have them, right? Yeah.

Scott Benner 38:35
It's incredibly common for years, years, incredibly, incredibly common to be over basal and then under, you know, under performing with the rest of it. May I read you this one that I got recently that I really I loved. I would make this into a t shirt and wear it. Please refrain from senseless drivel When dispensing medical info, this audio could have been narrowed down to less than five minutes. I hear you, Thomas. I just talk and talk and talk. Sorry Tom. Happens what I would say to talk if he was here, and if that is really his name, I'd say, Look, you know, the reason people listen is because it's not just cookie cutter, like cold. This is what to do. Like, if you made a podcast like that, maybe someone like him would listen, but most people would not want to give the time to they'd be like, This is freaking boring. Like, look at what you said. Like you talked about, you know, I wasn't even a full like, you know, cycle into the Pro Tip series. My a once he comes down a point. Like, I make all these, like, revelations about my settings and all this stuff and everything. But when you first started saying it. You said, I really like the way you and Jenny are together. Jenny seems nice, like you said personal things. You didn't say, hey, the information was really great. Yeah. Why you said, yeah, it was how you said it. Yeah, exactly. So anyway, Thomas, I'm trying buddy, but this is how I talk. And I don't know another thing, yeah, I just not. There's not much more I could do. Also, I hope. That crazy people now don't think not the Thomas is, by the way, I thought that was a fairly reasonable statement, of course, of course, he has a point. But I don't want actual crazy people to think that the way to get on the podcast is to leave a crazy review, because I won't be doing this again, just so you know. Okay, yeah, so tell the voices in your head to stop, because it's not gonna happen. All right, what about this? Did you have a eating disorder? Do you have an eating disorder?

Cici 40:28
I don't anymore. I didn't know I had it until I heard the podcast and I saw like, I heard the name of it really. So I went to Canada for a year to study, and I my a, 1c, there was like 13. So it was terrible, because, you know, we would go to sugar shacks and things like that, where you just eat maple syrup out of the tree. I was

Scott Benner 40:52
good when you said that I was gonna go Stacy, but I don't want you to feel like you're being parented by me. So I stopped. I love that. You said Sugar Shack. Is Sugar Shack a real thing, or is that a made up thing that sounds Canadian. No,

Cici 41:02
I think so. I think it's called like that. That's the name. You can check it out. I will. So I had a really bad a 1c and for the first time since I got a diabetes. Oh, so I didn't, I never said like when, when I got diabetes and I lost all the weight, I finally felt, you know, like thin and beautiful and whatever, which I hadn't before. My sisters were always like this thin, beautiful girls, and I felt like the chubby, ugly one, right, like the ugly duckling. Sorry,

Scott Benner 41:31
I know, I know you understand. I mean, I understand personally, and I have a daughter and so, but yeah, I It's so strange to hear, Well, it's nice to hear someone just say it out loud that, you know, because we can, like, I think, in America, we can try so hard to cover other people's feelings that nobody, sometimes people don't say what they think out loud, but okay, you felt ugly and like compared to your sisters.

Cici 41:55
Yes, I did sorry and like I heard. I did hear it sometimes, like I was the, you know, like the odd girl out a little bit, really. So somebody would say it out loud, no, like, not to me, but I did get

Scott Benner 42:08
a curate, something like the ancestors thing, I think,

Cici 42:10
my, yeah, like my uncle or something. So, yeah, I did have this, wait a minute, this concept, give

Scott Benner 42:18
me a second here, like, oh, look the girls. They're so beautiful. And Stacy's here, like that, yeah, like that, like that. Look who else dumpies Here. Okay, all right. Oh, it's terrible. I'm looking at you now. You're beautiful. Also, I'm looking at what a sugar shack is. And are you telling me that they go out in the snow and pour liquid sugar across the snow, and then it hardens, and you eat it.

Cici 42:42
You take it like a lollipop. Yeah, I'm on Canada.

Scott Benner 42:46
I know Canada. Come on, that's somehow awesome and terrible at the same time, right?

Cici 42:51
It was delicious, like I loved it, and I did have a lot of fun, but I also felt shitty all the time. No kidding, you can imagine that, right? So I did. I did have an agency of 1313. Yeah,

Scott Benner 43:02
okay, I'm so sorry. So you're hearing from family and other places that you're not the right person. You've, you've, you've lost weight, you feel better. Please keep going. I'm sorry. Yes,

Cici 43:11
and people start like, looking at me differently, so I'm pretty now and I'm thin, and they tell me, like, you look amazing, and they are not like they don't know what happened to me, or they do, but they don't understand that it's not healthy, like the way I'm looking right now, it's not my healthy weight, right? I think that was all unconscious on my head, like I just found it out now, yeah, like a year ago, right? But when I go to Canada, I do gain weight for the first time ever after my diagnosis, because I even if my a 1c was 13, it couldn't keep up with like, the way I was eating and not exercising and not taking care of myself, whatever. So I did gain like 10 kilograms, so like 20 something pounds, I guess, and I felt terrible like I didn't like the way I looked. So when I came back, instead of, like, getting my together, starting to get better control of my glucose, I just kept going like that. Like, I did a lot of exercise, and I just ate uncovered carves, and I would be high all the time, like, I would still have an A 1c of, I don't know, maybe not 13, but maybe 12 or

Scott Benner 44:23
11. No point did you know that I'm keeping my a 1c high, and that's keeping my weight down, but I'm probably on the verge of being in DK most of the time. Like, you didn't consciously understand that was happening, okay?

Cici 44:36
And but I it just worked,

Scott Benner 44:40
yeah? Like, Oh, I see. So you just like, well, whatever I'm doing must be okay, because I'm thin and people I'm pretty, right? Okay, right. But you didn't have, like, further thoughts about it, like, I'm but I'm doing something that's unsafe for me. I'm doing other damage to my body. I shouldn't you didn't have any of those. Like, did you know one? Subconsciously, when you look back,

Cici 44:58
yes, I think so. Like. I knew I shouldn't be 300 all the time, right? Did you

Scott Benner 45:03
know The direct line between that and the weight?

Cici 45:06
No, but I did. I do remember now that at some point when I was like 15 in in a TV show, like America's Next Top Model, there's Mexico's Next Top Model, and there was this girl who said, like, whenever I gain weight because I'm a diabetic, I just don't get my insulin that day, and I'm going to be fine next the next day, like, I'm going to lose a pound or whatever.

Scott Benner 45:28
I just put that out on television,

Cici 45:30
right? Yeah, it's crazy. Like, I I remember that now, but I didn't at that point. I don't think so.

Scott Benner 45:37
Is that show as crazy in Mexico as it is in America? It is, yeah. Arden made me watch it once. I didn't make it through a bunch of episodes, but it made my head hurt, right? Yeah? I mean, like, Yeah, it's crazy. Because if the model would have said, you know, if my weight goes up, I just do coke for a few days, like, they would have been like, No, you can't say that on TV, right? But this, okay, interesting, you know, it probably goes to show that nobody understood what she was saying, even, right, you know, yeah, that's something. It's also how most people tell me that they learn to manipulate it. They'll always say, like, oh, I learned a diabetes camp, like, I met some they don't mean diabetes camp. They mean I met other people. And I met a big enough group of people with diabetes, that someone had that, that method information, they shared it with me, and I was like, Oh, I didn't know that. And, you

Cici 46:26
know, I went to diabetes camp and I didn't learn I did

Scott Benner 46:30
no, no. So you do this for a while, then eventually you're saying the Canadian food put you're saying the Canadian food was harder than the Mexican food, yes, because it's sweeter. Now you're winning something. This is more simple sugars,

Cici 46:43
right? And because in my house, like my parents would, would be trying to give us, like, healthy food, right? Okay, yeah, your parents, I went, right? I went into a family in Canada, and they had, I don't know they had Nutella. I'd never tried Nutella. And I would do, like, spoonfuls from Nutella,

Scott Benner 46:59
yeah. Like, did you ever have a maple Long John while you were there?

Cici 47:03
I did, and I had a beaver tails. They were amazing, okay, like, things like that.

Scott Benner 47:08
Why do I know maple Long John? Hold on. Oh, it's actually the name of an episode. I didn't know why I knew it, but now I understand. So, okay, so you go from your parents trying to be like, please eat better to you know, hey, Stacy's here. She's a guest. Have fun. Enjoy maple syrup frozen in the snow, like that kind of stuff. Yeah, you finally it catches up with you. You put on weight, but your blood sugars are still high,

Cici 47:35
yes, so I don't know how I managed that. I mean, it sounds like you didn't. I was kind of scared, like, so whenever I got really high, like, 500 and things like that, I would give myself insulin. So I was more on a roller coaster. So I think maybe that's why I didn't lose weight. It wasn't consistent, like, consistent 300 Okay, yeah, so maybe that's why I did anyways, I don't know. I think

Scott Benner 47:58
this is probably a good place to say that diabetes really dangerous and you shouldn't be doing any of this stuff, but I do appreciate you, yeah, saying zero out of 10 don't

Cici 48:07
recommend. I'll

Scott Benner 48:08
tell you, right? Yeah, and I'll tell you right. Now, interesting thing is, how many people do you think just heard you say that, and they went, Oh, wait a minute, I don't eat very well. My blood sugar is high all the time. I'm thin. I correlate that with health Am I doing something wrong here? Like, I don't know either. Because if you didn't know, there's other people who don't know as well. But it doesn't stop it from being the health concern that it is. And do you see it as a like a psychological or a mental health issue as well? In retrospect, yes, I think so. Okay, you know, how, like, can you put words to how it happens? Or,

Cici 48:47
I think I've always been really anxious, and, you know, like, I have a lot of anxiety now, I see it I didn't before, and like this, need to fit in so I don't share like, I didn't share my feelings. I wouldn't talk to people. I wouldn't I don't know I was very introspective, and maybe that like, if I had, at some point voiced it like to someone, maybe they would have helped me get that like, see it from another perspective. Sometimes you're like, so closed off with your idea, when you don't see like,

Scott Benner 49:21
it's happening, right, right? The hardest part to it, when you're trying to help another person, yeah, is that they have their own thoughts, too. You can't just make somebody like, even if your mom saw it, she couldn't just force you to do the thing, you know, right?

Cici 49:35
And I don't think she saw like, I'm not sure if she saw it, because it wasn't that long, like, it was like, a year, or a little bit less than a year, and we're gone anyway. Yeah, yeah, I see

Scott Benner 49:47
So at what point do you like when you say you found the podcast and you brought this down? How long ago was that? A

Cici 49:53
year ago, just so I was, I was unmanaged, like, kind of for 16 years. I. Wow, a long time you feel better. Now, a little more tired. I can say that, like, tired, like it does take a lot of me because I had to, like, implement things I never did before, so, but I'm getting used to it. Um, it did. It was hard on my my feelings, like, how I felt when I was, like, 110, I felt like I was 50. You kind of manage

Scott Benner 50:22
it. How long did that last, by the way, until your body figured that out, like three weeks or something like that. Because it's real, like you, just because you're not technically low doesn't mean you don't feel all the feelings that come with a low blood sugar.

Cici 50:36
Right? Your body gets used to it. Yeah, gosh, oh, wow.

Scott Benner 50:41
Are you here to say I saved you? Am I getting a Mexican baby named after me? Let's go. What's happening? I'm

Cici 50:45
not sure. It's got, like, it doesn't sound nice in Spanish. What

Scott Benner 50:49
is it? Wait, what is it in Spanish, the same? Scott? No,

Cici 50:53
yeah, it's like Scott and like Scott and like scotch tape or something like that.

Scott Benner 50:56
Is there not like, an equivalent like that? You could pretend it's Scott, or we could, we could do something with S. Maybe I just love the idea of your husband having to call his son for

Cici 51:08
yeah in your honor, and hating you. Yeah. I don't care.

Scott Benner 51:11
Otherwise. I just love him looking down and going, I can't believe she made me name this kid after that podcast guy I don't like, right? But so are you really thinking about having a baby now?

Cici 51:21
So yes, but like, also, I've heard a lot of your episodes, and you're like, always, like, don't rush into it, because that's right. Like, we, we're not in the best spot, I think, yeah, economically. Like, it's expensive, yeah, yeah, yeah, it's expensive. And, like, I have to go to the US, like, to get my stuff. I can't get my omnipot or my Dexcom or anything here.

Scott Benner 51:42
Yeah, talk about that. So you're using Omnipod five, but that's not available in Mexico,

Cici 51:47
no. So I started listening to the podcast, and I I saw how, how my a, 1c, changed, just by attitude, you know, but you would push omnipot onto me, right? I was not put I

Scott Benner 52:00
just want to say I wasn't pushing it. I know they buy ads and I say the thing they asked me to say, and my daughter does use it, but that's it. Am I gonna use whatever you want? Sorry, no, no, you should. That word was so aggressive. You should use whatever you want. Like, seriously, go, go get a tandem. It's fine with me.

Cici 52:17
I'm sorry. I'm just bullying you. So, like I had already been on a tube pump so long. And I actually have funny stories about that. I've been on six pumps before omnipot Because I'm really clumsy and I dropped them electronic animus, like animus, Medtronic, Medtronic, Medtronic, electronic Medtronic, oh, oh, usually

Scott Benner 52:38
you just break your pumps. A lot. I would break

Cici 52:40
my pumps, yeah, okay, and they fell in the toilet. And

Scott Benner 52:44
do you think you had less respect for them back then than you do now? Yes,

Cici 52:48
yes, totally, like My poor mom. She had to fight with the insurance company all the time to get them covered, because they don't cover them, right? But she would fight them, and we did get them all covered. So, right? She deserves, like, a national holiday or something, absolutely, because she did get them all reimbursed. So, yeah,

Scott Benner 53:07
great. Well, I think your conversation really is highlighting for me the things that you think your life is about, day to day. Like, when you look back like this, like this is great like, because you retrospectively, get to look back over what happened to you, and you get to say, hey, look, I think this is what it looked like, but here's what was actually happening in so many different ways. I would hope that the people who are listening now, who are in real time going through these things, would think, well, this is what I think is going on, but I wonder what's actually, actually, yeah, you know, like, what's really going on in everybody's minds? It's making this whole thing turn like this. I think those are interesting things to consider. But okay, so you're throwing your medtronics into the toilet, right? Twice? Did you really do it twice? Yeah, but it was, what happens you pull your pants down. It's stuck on something. It yanks up and and stuff like

Cici 53:54
I had, I always had them on my pants and with a little clip. But whenever, like, like, literally, it was going to the bathroom, and the clip, like, fell. So it fell in toilet. Yeah, I was in, like, at work, and it was really embarrassing. And the second time was actually after I listened to the podcast, and I decided I wanted to try omnipot, which I had already seen. There are two people in my town in Mexico that use omnipot, okay, so they go to the US. We're in the, like, in the border, like, five hours to Texas.

Scott Benner 54:26
Yeah, five hours. This a fair, fair ride. It's, I know,

Cici 54:29
but I don't know. Like, people in the north part of Mexico are used to crossing for shopping, okay, how often do you do it? I used to do it, like, for shopping, before I got diabetes, every six months or eight months. Yeah, you go more frequently now that you have diabetes. I go every six months now, every six months now, I'm sorry, yeah, okay, but I live like in the south, south Mexico, like near Cancun, yes. So that's why I'm like, it's expensive, because I have to fly, oh, so you fly in to do it. Yeah? Yes, or I go to my town, and then I take a car and I cross,

Scott Benner 55:03
I got you Okay, right? And then it's the insurance that your father set up for you that's still going, yes, yes. Do you pay for it now? No, like they, they're helping us out right now. Do you know how much it is?

Cici 55:17
No, I but I can't check it out. I know it's, it's significant. So that's

Scott Benner 55:24
wondering, like, if, for other people listening, if you know, like, how they could do that. I also want to point out the Omnipod that, you know, you bought an ad for me to sell something in America, and I was still able to sell in some public Mexico. Yeah, right, yeah, yeah, yeah, great, yeah. I'm just wondering how much it costs, because, I mean, is it a thing that's something ever do you think your are your parents? How do I Are your parents? Well off they

Cici 55:47
are now. I think back then, they were having a hard time, and that's why they're helping me now, like they're they were able to afford it when I was 12. So they they'd been married for like, 15 years, and they were like, they had started a business. It was going great, and they had a hard time paying it. But after I got diabetes, they were like this indispensable now for me and for my sisters, just in case, yeah, they just kept on paying it. I think it happened because one of my mother's friend's sons got cancer, right when he was scared. Your parents really young, yeah? And he it was really, really hard on them, and so they, they got that insurance because

Scott Benner 56:25
your parents have been married over 30 years now. Yeah, 35 Wow. It's awesome. Yeah, very cool.

Cici 56:31
Good for them. Yeah,

Scott Benner 56:33
I've been married 29 years. And I was like, I don't actually meet a lot of people who've been married longer than me unless their hair is

Cici 56:38
gray. So my father and mother in law, they're, they've been married almost 50 years. Wow. How old are they? They got married at 20, and they are right now. They're 70.

Scott Benner 56:50
Wow, that's crazy. Yeah, that's really nice. Yeah, I just I'm as long as my hair stays dark, I think I'm okay, but you're fine. Yeah, as soon as it pivots like I'm in a significant what made you reach out and want to be on the podcast. I think that,

Cici 57:06
like the idea that attitude is everything, and then you're never too late change your attitude. I was 16 years into diabetes, right? I thank God never had any. Well, I don't have any, okay, so I have no, I don't have any effects from my diabetes yet, but I was, I was really out of control for a lot, a long time. And I think I don't know the diabetes gods that I don't have anything, right? I did take action at some point, even if it was maybe late in someone's eyes. And I think anyone can change their perspective, like that.

Scott Benner 57:44
Great. You don't have like, like, an anger that you didn't figure it out sooner.

Cici 57:47
Yes, oh, you do have that I was out of control for 16 years, and you can still switch, like, with the switch. Yeah, it's never

Scott Benner 57:55
too late, right? Well, I mean, it could be too late, but you got him, I know, but I got lucky. Yeah. Do you feel like that? Do you think like, wow, I just gets random. Like, the Genesis is, I maybe want to have a baby one day, but when I'm ready to get pregnant, I don't want to have to stop and think about my diabetes. So let me put that in order first. Oh, here's a podcast and a book. I'll read the book, but I'm not going to listen to the podcast because the guy podcast because the guy's a dad. Gary says, you know, have a better attitude. The way I say it, by the way, is I always say, like, there's no room for drama in diabetes, right? You need to take care of yourself. We don't have time for all the like, what was me and the sucks and everything like, do that later, right? And then you go back, listen the podcast, do the Pro Tip series. Your Stuff comes down, and then it occurs to you, I should share with those people that are listening that, look, I did it. I got out of this,

Cici 58:51
right? Yeah, yeah, okay, that like to hear from someone that so long was like I had that woe is me like mentality. I just, I felt all the time like I was just angry life and diabetes and whatever. So like even the most pig headed person can change their mind, right? You

Scott Benner 59:13
don't want your episode to be called formerly pig headed, do you? Because I would do that too. You could whatever you like, or whatever I like. Don't put it on me. It's gonna end up being something stupid. I can tell you that for sure. I like that. I love finding out the why, the names of the episodes. Oh, do you okay? Yeah, I love it. We'll call it formally pig headed. Then, okay, great.

Cici 59:35
What would that be in Spanish? So pig headed would be terca, like, T, E, R, C, A or T, E, I

Scott Benner 59:44
love your language. You don't even know for sure.

Cici 59:47
I'm like, no, because I have to, like, translate the letters in my mind, okay,

Scott Benner 59:51
maybe I'll do it like that. Like, maybe I'll do it in English and then spam. Maybe I'll do formally tereka.

Cici 59:59
Okay, I like it for. Money that guys, it's nice. So yeah. So after I started listening to you, I decided I wanted to try the Omnipod, because I dropped all my electronic pumps, and they were, like, messing with my life. I talked to my husband, and he said it was a good idea, and we had to, like, take advantage of the of the insurance that I had, right, that I was lucky to have. So we figured out who we wanted to see. I talked to the guys. I told you that use omnipot in my town, yeah, to see where they went, to get them, I ended up going to a different doctor, one that my girl in my town told me about, that she's using the Medtronic 770-747-8780, yeah, I think, I think 740 in Mexico, but she went there to get to 780 Okay, so I went there and I talked to him, and I told him I wanted to switch to omnipotent. He said for him, we took advantage of the four days we had there, and we went to the pharmacy, and I got six months of supplies like front right with my credit card. They were like, they they didn't understand, like, how I'm going to charge you in your cart. I'm like, yes, so my insurance, not like, the ones you know, I needed to charge everything in my cart. And they were like, it's really expensive. I'm like, I don't care. Like, just do it. Yeah, right. I was messing up with their logistics or something. And we got everything for six months. Came back, started using it. Didn't like the automated mode. It was a little bit too conservative for my new mentality, right? So I started using it in manual, and right now, my a, 1c, is five, two.

Scott Benner 1:01:30
Wow. Look at you. Do you ever think about turning it on for overnight? I do,

Cici 1:01:33
but I don't know why. It always wants to keep me at 130 and I wake up tired whenever it does. That is

Scott Benner 1:01:39
the target set at 130 right now? No, it's 110

Cici 1:01:43
it's 110 Yeah, okay, I don't know either. Yeah, I don't interesting. Did

Scott Benner 1:01:49
you think? No good. Sorry, no, go ahead. Go ahead. I was gonna say. Did you think about getting dash pods and using, like, that's it loop or something?

Cici 1:01:56
So we're gonna, because I heard it in the podcast, and I heard that you guys switch to Iaps. We're gonna try that. Yeah, Arden's using trio at the moment. Oh, okay, I didn't know that. Yeah, I'm gonna look into that.

Scott Benner 1:02:07
It's Iaps on another branch, so okay, but that's what she's using right now, and it's working great. Oh, it's nice. Yeah, I don't think you could, probably couldn't go wrong with, like, loop, with auto Bolus, Iaps trio, like those, in my opinion, yeah, would work. Well,

Cici 1:02:24
we built, well, my husband, he's really tech savvy and not that much. He built the pump, and he we're using it like a trial pump, like to see what decisions takes and things like that. But it's not linked to any pod. So when we go in December to get my new supply, I'm going to ask for Dash,

Scott Benner 1:02:42
oh, oh, wow, look at you. I was ahead but behind when I said that. Yeah, you're you're like, Oh, I'm already taking care of it, right? I am. Do you enjoy listening to people's stories on the podcast, or are you more interested in like,

Cici 1:02:57
like, management stuff? No, I do enjoy the stories like I started with the management, because that's what I thought was logic. But then I started listening to everything, and I think I've listened to almost everything.

Scott Benner 1:03:10
Thank you. I appreciate it very much. I'm good. Do you have anything else? Did I forget to ask you anything? No, I don't think so. All right, then we have to go back to this for a second. So it's T, E R, C, O, this is chat, G, P, T, by the way, explaining Spanish to me. Okay, T, E R, CO or cabenzon, C, A, son, they say it again, cave. Son, yeah, I wasn't gonna get that right. It means head. Like, like, you have a big head,

Cici 1:03:37
okay, but you don't have a big head. You're not big headed. Like, literally, I am. I do have a big head. Do you really have a big head? I do. Like, I had the biggest graduation had in the whole generation, like, including men. So I do have

Scott Benner 1:03:50
a big head. Do you know now that I've lost weight, none of my baseball hats fit? Really, I didn't think my head stays the same all the time. No, my head lost weight. Nice, it's ridiculous. No, mine didn't. No, seriously, like, I wish I had, I wish I had one in here to show you, like they just kind of fall so stupid. They just kind of fall down, right? And it's silly, but, but anyway, all right, so I so I want to go with ter CEO, is that right?

Cici 1:04:16
Right? But it would be tr ca, because some gar a girl,

Scott Benner 1:04:20
is your girl? Right? All right, I got it. I'm good. Okay, excellent, great. I appreciate you doing this very much. I appreciate also people don't know if, but you let me push the time back today, which was great, because Arden was leaving, uh, after her fall break for school, and you allowed me to spend some more time with her, so I appreciate that too. Borus, yeah, I didn't know she was going to be here on this day when I set this up. Yeah, me neither. But honestly, to say that if I would have known, I could have done something differently, is also giving me way too much credit for being focused on top of things. I really means a lot to me that you found the podcast and. And helped yourself so much with it. It really does. Yeah,

Cici 1:05:04
thank you for what you do. I think it's really, really important. Thank

Scott Benner 1:05:07
you. No, that's lovely. I don't get enough of this. Like, my days can get long with, like, the back room stuff of making the podcast and, like, you know, sometimes you just the way I keep myself grounded, keep myself aware of what it's you know, what the end result of what's happening is, is usually just like through social media, where people will come and say, Oh, this really helped me, or something like that. But then if a week or two goes by and I don't look at that stuff, then I end up feeling badly, because then people reached out and I didn't see it, which makes me feel bad, right? And then I'm like, oh, I should have read this last week, when I was having a bad week, you know, because it really would have helped. Or this morning, by the way, when somebody I do business with was just like, there's such a pain in the ass. Like, they, they email, like, children, do you know what I mean by that? Like, yeah, I do. Like, here's a thought, and then you answer it, they go, Oh, and here's another thought. I'm like, oh, what? Or what are we doing? Like, can you just put this into one email please? And they're lovely people, and there's nothing wrong with them. They're what they're representing or anything. They just, I just hate the way I'm gonna keep saying that email. I because I don't want to say he or she. I just hate the way they email. And right when it happens, I just go, I'm like, Oh, is this what my day is going to be, Hey, before I let you go, the artwork behind you? Is

Cici 1:06:25
it yours? Yes, yeah. Not that one. No, this, like this little ones and the big ones, there. Are

Scott Benner 1:06:33
they painting? Are they watercolor? Are they marker? These are paintings.

Cici 1:06:36
They're acrylic. And then this ones are screen printed. I do screen printing. Is

Scott Benner 1:06:41
that what you do for a living, or you just for fun? I'm trying to switch it

Cici 1:06:46
for a living, like I do wedding invitations and graphic design. Oh, that's beautiful. And then what I try to do is integrate painting in the back of a wedding invitation so that people don't throw it away.

Scott Benner 1:06:57
Oh, okay, so it seems like art. They'll hang it up and hold on to it, and even keep it after the after the date.

Cici 1:07:03
Yeah, I put a little note on it saying, like, don't throw this away. It's a gift from the like, from the couple to you and, right. Oh, it's lovely frame it.

Scott Benner 1:07:11
I have to tell you, it's not an easy thing to do. Like, I don't even like my logo. Is I don't even like my logo. I just can't like it's so difficult to get something else, you know, like, I'm not artistic. I'm like, I'm not going to be the one to do it. And when you reach out to get somebody else to do it, it's their esthetic. Like you're, you're buying their esthetic, right? And then if you don't like it, what do you do? And it's, I don't have endless money to be like asking people to change it, but I,

Cici 1:07:38
I guess it probably help you. Everyone No, I'm not. I do logos as well.

Scott Benner 1:07:42
Yeah, but I'm not. I'm not, I'm not haranguing you. I don't know if you know that word or not, but I do. I didn't know it. It just feels like it's like one of those things, like I would change that if I just, if somebody would just do it and then present me with something that I went that's perfect. Thank you. Thank you. I'll just put it up, but I don't want to be involved in the process whatsoever. And if I don't like it, I want to be free to say I don't like it. But having said that, I don't know what I would want to begin with. I don't like it to be ham fisted, like, I wouldn't want needles running through it, and, like all that, I hate when they have needles, because I mentioned that it doesn't need to be and I don't need a juice box to be involved. Like, you know what I mean? And then I just yeah, anyway. And anytime I've ever reached out to anybody, they're like, well, we could put it on a juice box. On a juice box. And I'm like, Yeah, because that seems obvious, and I don't want it to be that obvious. Then I get bitchy about it, and then I just give up. So right, you were really lovely. I appreciate this. Are you in the private group I am, but I never speak you, never. You've never, like, ever,

Cici 1:08:38
never. It's interesting. No, I'm one of those people that lurks that you've mentioned sometimes. Yeah, awesome.

Scott Benner 1:08:43
There's way more lurkers than speakers, that's for sure, I know, but I was just wondering, because I hadn't seen your name there. So I was like, Maybe

Cici 1:08:52
I think you should find me there if you look for me. Okay,

Scott Benner 1:08:55
well, I'm not gonna, I'm not gonna have to be creepy. I'm not gonna do that, but that's fine anyway. I really, I really appreciate this. Hold on one second for me. Yes.

Us, med sponsored this episode of the juice box podcast. Check them out at us med.com/juice, box, or by calling 888-721-1514, get your free benefits check and get started today with us. Mid 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/juice, box. One year, one CGM. Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus. Here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 okay, well, here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Uh, why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app, go to YouTube and follow me, or Instagram, tick tock. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page you don't want to miss. Please do not know about the private group. You have to join the private group as of this recording, it has 51,000 members in it. They're active, talking about diabetes, whatever you need to know. There's a conversation happening in there right now, and I'm there all the time. Tag me. I'll say hi. The episode you just heard was professionally edited by wrong way, recording, wrong way, recording.com, you.

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Scott Benner 3/6/25 Scott Benner 3/6/25

#1453 Big Baby on Board

Stephanie, 37, diagnosed with T1D at age 7, is 28 weeks pregnant via IVF with wife and their 11-year-old son.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox Podcast.

Steph 0:15
Hello, I'm Steph. I'm 37 I live in the UK. I've had part one diabetes for 30 years. I'm currently 28 weeks pregnant with our second son.

Scott Benner 0:27
Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. I know this is going to sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you blue circle health.org you know why they had to buy an ad. No one believes it's free. 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/juice box. The episode you're listening to is sponsored by us. Med, us. Med.com/juice, box, or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med,

Steph 1:58
hello. I'm Steph. I'm 37 I live in the UK. I've had diabetes for type one diabetes for 30 years. I'm married to my wife, Leanne. We have a 10 month old, nearly 11 months old, son, and I'm currently 28 weeks pregnant with our second son.

Scott Benner 2:17
Oh goodness, look at you. Well, congratulations, first of all, on both of them. Thank you very much. Awesome. And wait, you were diagnosed when you were seven years old. Yes, yeah, okay. And what was that like? What is your recollection of it?

Steph 2:30
Honestly, I don't necessarily remember a whole bunch of it. I remember specifically walking across the car park to the hospital, eating, chew its so chew its are this, like, fruity, really sugary sweet. And I like to think that was like the last legal sugar I could have had. And it certainly made my, well, first blood sugar test super high. I think I was like 33 something. So, oh, so we Yeah, UK, we use different units to us, so I think that's around 600 Oh, okay, but yeah, so that's pretty much all I can kind of remember from diagnosis. I'm

Scott Benner 3:10
going to ask you a question that you have no you don't have no way to answer this. But do you think you remember that because you remembered, or do you think people have retold that part of the story so many times that it sticks

Steph 3:20
to you? I don't know, because I was talking about it to my parents recently, because I've just sort of turned 30 years, like last month. So I was chatting to them about it, and they they didn't seem to recall it until I'd said it. So I think I do kind of remember it. I do remember other things, like the first couple of days we were injecting into oranges, which is nothing like human skin, obviously. Yeah, think things like little things like that I remember, but I don't really remember being in hospital or being freaked out or anything. So a

Scott Benner 3:52
person just told me recently that the nurse at their diagnosis give her a syringe and said, Go ahead, put it in my arm so you can see what it feels like. She was like, No, thank you.

Steph 4:04
That's, I mean, it's true to life, but geez, no, thank you. I

Scott Benner 4:08
think the Hospital found a sadist, and they were like, we have the perfect job for her. Yeah, absolutely okay. So you were diagnosed now, do you have other siblings, any other autoimmune in your family, or die, or type one? Yeah,

Steph 4:21
there's a bit of type one, but it's kind of relatively distant. It's like my mom's great uncle. It's my mom. Wait is it my mom? Yeah, my mom's uncle on one side and my mom's aunt on the other side. So yeah, they're both type one. As far as I know. They were old when I remember them, but apparently they were doing insulin. So

Scott Benner 4:41
how about like, celiac or thyroid stuff like that? No,

Steph 4:44
so there's a bit of thyroid as well in my mum's family. I think my mum her sister and two brothers, and my my my grandma, grandmother as well. There's some undiagnosed maybe rheumatoid arthritis, and I think maybe my grandma. Had, I think it's myelofibrosis, which I think can be autoimmune. Okay, so there's, there's a little bit around

Scott Benner 5:07
there, not a lot that I'm just used to very translucent Caucasians that don't do well in the sun. Usually have more of that going on when I'm interviewing, right? But we don't have a lot of sun here, really. No, no. I know. They don't give you, they don't let you have the sun there. No. So the Queen took your candy and then you what is. What does diabetes look like 30 years ago in the UK? Or do you even remember? Yeah,

Steph 5:29
well, so I started on and I I was cloudy and clear insulin. I don't exactly remember, but it was that must have been short acting and long acting, right? My parents seemed to think it was pig insulin, but that would have been like 94 so I'm, you know, I'm not going to not believe them. I'm not entirely sure. So, yeah, that was manually drawn up into one of those syringes, right? With the looking back, pretty big needle, from what I was told. And I don't really remember this very much, but I was injecting myself from pretty much day one, they my parents would mix, mix the dose together, and then I'd inject it. I think it was probably, I remember isophane being one of the insulins, maybe. But I think that may be mph, yeah, and maybe humulin, so. But either way, it was clear and cloudy, and you start to mix them together. But

Scott Benner 6:21
then your parents were, like, here you're seven, you're old enough to do this. You

Steph 6:25
were, I think I was just super stubborn, or like, Give me that. I'll do it sort of thing, which it kind of tracks,

Scott Benner 6:33
oh, that's held up throughout your life. Yeah, I'd say, so, yeah,

Steph 6:38
okay, gotcha help me out when, when something's actually fallen on me, I'll, I'll try until then,

Scott Benner 6:44
unless the car is on top of me, Scott, I really prefer to try on my own, if you don't mind. Yeah, yep, okay, all right, so we'll call you stubborn and then, but it works for you, right?

Steph 6:54
Yeah, yeah. Pretty much it's gotten into knowing how to control my diabetes, I

Scott Benner 7:01
suppose. Well, talk about that because, I mean, at some point you get off of that, that cloudy and that clear, right, and you move to a faster acting insulin. Do you remember about how old you were when you made the transition?

Steph 7:11
Yeah, I think it was somewhere around so the back end of primary school, so I would have been maybe nine or 10. Okay, pretty soon then, yeah, and I think then that was when the first I don't, I think there were reusable pens were around. I think, I think I vaguely remember having one with dinosaur stickers on it, nice, which sounds quite fun. So, yeah, that would have been around nine to 10, but there wasn't really any gone. Sorry.

Scott Benner 7:41
Okay, how long did you use injections? So

Steph 7:45
I only switched to a pump two years ago. Ooh. So, yeah,

Scott Benner 7:49
28 years Yeah, yeah. What's the process there? Is it just that, like things are going so well, and this is what I'm accustomed to. Or like a lady I interviewed the other day who told me, 100% not joking around, that she was always concerned, and these are her words that China would take control of her pump and give her too much insulin.

Steph 8:09
Oh, I mean, fine, if that's fair enough, hey. But no, I'm not. We

Scott Benner 8:16
joked about it for a while. I said, I'm trying to imagine someone in China going, hey, you know Tanya in Ohio. Let's get her,

Steph 8:23
yeah? I mean, it would you take some, yeah, real commitment to try and track down individuals for that reason,

Scott Benner 8:31
yeah? But, I mean, my point was that she was scared of technology, you know, and sometimes it's just because people are doing great. But what was your reasoning for switching and why did it take as long as it took? I

Steph 8:42
think it was just the way it was done for one thing. And one of my friends was on a pump, and he had tubes. And I couldn't be asked with tubes. I'm I'm clumsy for one thing, and I just couldn't stick the idea of having a tube hanging off me the whole time. So I just didn't really give it any thought, like diabetes nurses or and everything, didn't really ever ask me about it. Just didn't know. And then I started listening to the Juicebox Podcast, and learned about Omnipod, fact that they're tubeless and brilliant, and that got me to change my mind pretty much. I started to look into them, listen to the podcast more, and felt like it was a smart move.

Scott Benner 9:20
Okay. And so it feels like what you're saying is that I'm the reason you changed to a home.

Steph 9:24
Yeah, in a nutshell, all right, thank you. Hey,

Scott Benner 9:28
you're welcome. Are you just here to say thank you? Is the is the podcast over? Yeah, that's it. Can you imagine I could do this for another 10 years and I'm just completely out of things to say, and it just turns into people calling up and being like, hey, thank you. And I go, Oh, no problem. That's over. Do you have context for what about what was said or shared, or what you heard that made you go, I will try this. The contour next gen blood glucose meter is sponsoring this episode of The Juicebox Podcast, and. And it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. That's right. If you go to my link, contour next.com/juicebox, you're going to find links to Walmart, Amazon, Walgreens, CVS, Rite, aid, Kroger and Meyer. You could be paying more right now through your insurance for your test strips and meter than you would pay through my link for the contour next gen and contour next test strips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now, even with your insurance, and I don't know what meter you have right now, I can't say that, but what I can say for sure is that the contour next gen meter is accurate. It is reliable, and it is the meter that we've been using for years. Contour next.com/juice box. And if you already have a contour meter and you're buying test strips, doing so through the Juicebox Podcast link will help to support the show. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works? And I picked it up. I was like, hello, and it was just the recording. It was like, us, med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it? Push this button if you want us to send it, or if you'd like to wait, I think it lets you put it off, like a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it us. Med.com/juice, box, or call 888-721-1514, get your free benefits check now and get started with us. Med, Dexcom, Omnipod, tandem, freestyle, they've got all your favorites, even that new islet, pump. Check them out now at us. Med.com/juice, box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox podcast.com to us Med and all of the sponsors.

Steph 12:27
I think I just didn't know there was cheapest ones for one thing. Oh, okay. And the more I, I guess I listened because, because, I guess the year before I'd switched to pump, I changed insulin, maybe three or four different ones to try and eliminate Dawn phenomenon and and gaps, you know, where your long acting, your basal starts to run out inverted commas, and you can see gaps and stuff. I was trying to eliminate that. And I was really trying to do looking back, what, what a pump kind of does anyway. So I was doing corrections. I was trying to do, you know, I had a half unit pen. I was trying to do quarter units by just pressing it and pulling it out really quickly and hoping that was just a quarter ish,

Scott Benner 13:11
what you were doing, you're like, oh,

Steph 13:14
yeah, in it whilst, like, still removing the needle, yeah.

Scott Benner 13:19
So you're just like, you're judging by how much squirts out at the end, if, like, you did it well enough or not, like, that's a pretty big drop. I might have got it out in time.

Steph 13:26
Yeah, yeah, yeah. So, yeah, that was, that was kind of it, really. But I just, I couldn't get what, I couldn't get the control I wanted, then out of, out of just pens and insulin, that way. So, okay, yeah, I think. And I guess before that, the year before, I'd got on a CGM for the first time. So I only got one of those in about 2019 28 no must be 2018 2019 Okay, which was self funded for a good while. And that really showed me where, like I say, where the gaps were coming in, and where the peaks were, and where I was really crappy overnight. And you know, the morning that Dawn phenomenon, why the hell am I raising I've just put my foot on the floor. What's going on, all those sorts of things. So it really opened my eyes to being like, I can be a lot better than this. Yeah, and then, yeah, tubeless pump was the way to go. Okay, all right,

Scott Benner 14:17
excellent. Well, I'm glad to hear that now, the 28 years in between. What were your outcomes? Like, what were your goals? You know, what blood sugars were you shooting for? What did you consider a spike? Like, tell me about your care.

Steph 14:29
Yeah, I, I can't. I don't really have my like, a 1c results back further than, say, 2015 so I don't have it anything through uni at all. I to be honest, I'm not sure whether all the drinking I did at uni made me forget everything, but I don't really remember a whole hell of a lot. I do remember doing insulin, and I do remember carb counting, and I think the friend I mentioned earlier, he with the tubeless pump, with the tubed pump. Sorry. He. He when he joined uni, he was like, oh, you know, have you ever done carb counting? And I was like, No, so I guess Yeah, at uni. So I'd gotten to age 20, and I'd never done any carb counting or any thinking about it. I just done, I think of six units, say for dinner and six for lunch. So

Scott Benner 15:18
you, you get, like, cloudy, clear at seven years old, but at nine you've got a faster acting insulin. Or what are you using that? Is that just it, just regular, like, or are you like, when do you get, like, human log, I guess is my question.

Steph 15:32
Yeah. So I think it was just before uni, so I was maybe 17 or so, okay, okay.

Scott Benner 15:37
So you were just doing regular and mph, then for those times in between, yeah.

Steph 15:41
And then it was Nova rapid, and I think Lantus, maybe.

Scott Benner 15:44
But when you're saying then is that, when you were given that you weren't also given direction on how to use it? No,

Steph 15:51
not necessarily. I definitely was able to do corrections. Because I remember, you know, getting to say, I don't know, 14 or so, and I don't know what that is off the top of my head, I think that's maybe 250 and being like, I can correct for this now. So I do remember correcting high blood sugars at uni, but I don't think I ever really thought too much about anything that was above a 10. Okay, I

Scott Benner 16:15
want to tell people that at Juicebox podcast.com there's a calculator so you can, like, like, see what she's saying here. A 10, for example, is 180 blood sugar. Yeah, yeah. Okay. I'm trying to understand. I'm always trying to understand, during these conversations, that you go to the doctor's office one day and they're like, hey, guess what? Steph, great news. But they sound more like Mary Poppins, right? While they're saying it to you, and then it doesn't sound like me. We've got this fast tracking in so now you can crack blood sugars now, and blah, blah, blah, and then it's just here it is. God bless, see ya. Yeah,

Steph 16:49
I think so, because if it was around 17, then I was going off to uni. I was out of the juvenile diabetes care. I changed, you know, counties, I moved two and a half hours away from my parents. I just joined the GP, the local doctors practice, and they saw me, I want to say once every six months, maybe. And my a one CS, in fairness, throughout uni were, I mean, I don't remember what they were, and I don't have any record of them, but they were always like, yeah, you're doing fine. But now, looking back again, I must have been like roller coaster in the whole time, right? Like 100% again, I mentioned my drinking. I sometimes don't really know how I woke up, knowing what I know now about how alcohol works with insulin and everything I yeah, I think I made it lucky to get through some of those nights. What do

Scott Benner 17:42
you think your a one Cs were during, during college? I can't say uni. I'm sorry. I mean, I want, I want to, but like, it feels really weird Well, considering

Steph 17:50
they never were worried, and they never told me to make any real changes at all. I they must have been, I don't know, maybe seven or eight. So nothing to really flag. Anything particularly like, I didn't really start getting them, like tracking them, for one thing, until, like, 2015, not that long ago, really, I was well out of uni at that point. What the

Scott Benner 18:11
hell was the doctor saying when you tell him you're doing well, then doing well? What did that mean?

Steph 18:16
I don't know, but I know I always used to leave the doctor's office and be like, you know you've done fine, great, off you go. So

Scott Benner 18:24
you think it's you showed up, I gave you your prescriptions. You're not dead. You're doing great.

Steph 18:30
Yeah, yeah, I do think so, yeah, jeez. And until I really started to pay attention to it, and when I got a real job and finished uni and everything, I think that's when maybe I cite to pay more attention, and that's myself. And yeah. Okay,

Scott Benner 18:45
so let's, let's talk about the drinking for a second. What did you go to school for? What was your major forensic science? It's not important that you understand that at all. Don't worry about it. How many people are in a UK prison right now because you were drunk during class. Do you think,

Steph 19:01
Well, I don't work in it. For one thing, they're safe,

Scott Benner 19:07
let's say from you. Yeah, yeah. So help me a little bit. Did you come from a big family?

Steph 19:11
No, just me and my sister, Catholic? No, no, you weren't

Scott Benner 19:16
like, particularly held down by like, rules or anything like that as a child. Like, why do you go off and just, like, say, like, I wonder how much alcohol I can get in my face.

Steph 19:25
I think I turned 18 in July, and we start uni in September, so I hadn't and I had quite a baby face at the time, so I wasn't able to go out with my friends, you know, illegally when or when they turned 18 or before me. We can drink 18 here. And I think I just went for it. Just really liked being drunk. Can you tell me why I'm not

Scott Benner 19:49
quite I'm not trying to make you feel bad. I'm interested in your answer. Like, because, you know, like, the regular answer going to be back from if somebody's there, they're going to say, like, oh, it's an escape. From something? Did you feel like you were escaping from something?

Steph 20:02
No, I think it was just fun. Okay, it was, it was just fun to feel it's out of control, but it's not quite out of control. I suppose, although, you know, there were get carried home by your friends nights, for sure, it just it was fun. It was a lot of fun to feel free. I suppose other drugs. What it was, No, not at uni particularly, maybe bit of weed, but it, I wasn't really around it that much. So I didn't, I just didn't have the opportunity, I suppose.

Scott Benner 20:30
Okay, all right, do you still drink as an adult? Yeah, not at

Steph 20:34
the moment, but yes, yeah, much less since our son was born, much less before that also. But yeah, now I do still like to get drunk. Okay, not again, not at the moment, pregnant,

Scott Benner 20:45
but yeah, I'm not drinking now. For anyone who's listening, I just want you to just

Steph 20:51
double down, say it again. I'm not drinking because I'm pregnant, okay? But no, I do like to drink. I do, yeah,

Scott Benner 20:58
fair enough. I'm, yeah. I'm just like, you know, for people listening, I'm trying to make sure I I've got the story laid out for them so you were not considering your diabetes while you were, while you were at school, and you were and you were drinking a lot, but you never had an issue. No,

Steph 21:14
no, no, not really. I mean, any lows that I did have I treated myself with, you know, just dextro tablets or jelly beans or jelly babies or something like that. You know, I don't there were, there were definitely some nights that, again, looking back it, it looks like maybe I was spiked. And now, now I'm thinking back. I'm like, yeah, no, I just was having a super low again, yeah, to my reference earlier. I'm lucky, lucky. I've managed to wake up, I think, which I laugh, but it's probably not that smart at the time.

Scott Benner 21:45
I mean, is there a part I know you're laughing because you're alive still, is there a part of you that's sad about it, or sad about having done it? Just that idea of like thinking of your younger self, like being carried home and not sure where their blood sugar is?

Steph 21:58
I mean, I think the whole being carried home. Thing was, was almost part and parcel of what, at least my friendship group did. We took it in kind of, almost in turns. But I'm just, I'm just, I don't know how, how I got through it. I'm just feel incredibly lucky. You know, I'd be drinking like, you know, these you have alcohol,

Scott Benner 22:15
Pops, no. I mean, we might, but I don't know what you're saying.

Steph 22:19
It might be, like, is it West Coast, West Coast cooler? Is that? Do you guys have that

Scott Benner 22:24
I don't drink? I'm lost there? Like, yeah,

Steph 22:28
that they say on the back of the bottle, they come in, like, glass bottles or plastic bottles, and they're really sugary and sweet and flavorful, and they're about 5% alcohol, and they say on the back, don't drink if you're diabetic. Basically

Scott Benner 22:44
yeah, it says on the back Stephanie, this is, you don't do this next

Steph 22:48
to the little pregnant lady sign. There was a don't drink of your diabetic comment. I was drinking a lot of those. For one thing, I like pints of, you know, beer. So everything that was carby and bad. So I must have spiked like crazy during that time and then absolutely tanked overnight, because I'd wake up in the morning and be a perfectly decent, beautiful five blood sugar, which is like 90. So I'd wake up test and be like, great. Carry on with my day.

Scott Benner 23:16
Hey, I'm alive. Let's go well, you, I mean, in fairness, you learned that from your doctors. Yeah, yeah, true. Still standing. Doing great. Let's go. Yeah, absolutely okay. So when do you find the podcast? Is it a couple years ago, or is it longer than that? It took you a while to, like, say, I'm gonna try a pump. No,

Steph 23:35
it's, it's probably 2020, so during COVID and things, because, you know, I started to start listening to start listening to podcasts, and I started to drive more to work. So I had something to listen to. It must have been when I started to look up pumps and or or CGM or something that I came across. It got onto the pro tips. What kind of

Scott Benner 23:53
I don't need to know exactly what you do, but what kind of work do you do that went during COVID? You're like, oh, I now drive more to work. Oh,

Steph 24:00
no. So I we moved, oh yeah. So we moved further away, so I was driving further to get to work. I work for like, a CGM, CGM, fast moving consumer goods company, you know, Unilever, they make Dove deodorant or and, oh no. It's not called dove where you are. This

Scott Benner 24:19
is fun. So you like deodorant, but it's called something, you think of it as something different than what it's called. Where it's here, yeah,

Steph 24:26
it's called, sure here, it's called Rex owner and other companies. And it's called, I think it's degree in America, okay,

Scott Benner 24:32
I know degree. I don't use it personally, but I'm aware of it. Well, do you get it for free?

Steph 24:38
No, that sucks. With those workshop you get it cheaper, but no, no, but they make lots of an awful lot of other stuff. It's a huge company. Okay, I've probably sold out to the big man somewhere down the line. Now,

Scott Benner 24:52
got the man's got me by the short and curlies. I can't get away. Okay, that's

Steph 24:58
it. So, yeah, I. Just I started driving further because we moved so it was, you know, an hour and a half, two hour drives, which I'm probably not that far for you guys, but

Scott Benner 25:07
Well, that's like, all the way across England, doesn't

Steph 25:11
it? It's from the middle to the edge. No kidding, yeah. So yeah, plenty of time my

Scott Benner 25:15
daughter drives, now five and a half hours to get to school, which is only on the other side of the state that's next to us. So that's crazy.

Steph 25:22
Oh, he's crazy. Yeah. Okay,

Scott Benner 25:26
well, okay, so you so you find the podcast. You start listening. You know you're hearing different ideas. You seem like a very pleasant person. I don't know if you know that about yourself, right? Like, thanks. Yeah, no, of course. Do you so does it give you like, do you get angry? Are you like, I can't believe nobody's told me about this stuff for so long. Are you just like, oh, new thing. I'll try it. No,

Steph 25:43
yeah. I think it was, like, new thing. And I just, like, sucked up all the information so I could go and go to the doctors and say, I want this, and this is why can I have it please? Because obviously, here we've got the NHS, so there's a lot of blockers to getting technology and getting new, better, different technology. So you had to really, like tick a load of boxes to fulfill the criteria to get a pump to then next step, it's you have to do a load of classes and learning and things like that. But I basically learned it all through the podcast. So I could go to the nurse and say, I know how to do this, this and this and this and this, and this is what it will help me with. Because we do some, well, we don't, at the moment, we do things like we do lots of different sport, relatively sport, but we do white water kayaking. Okay, so it's like you're in an all covering dry suit so you don't get wet. So things like doing manual injections when you're wearing one of those is impossible. For one thing, the pump, getting the pump, that was one of the reasons for that. Working in a lab was another reason, you know, I can't necessarily be in and out due to doing injections, doing blood tests, you know. So

Scott Benner 26:55
pulling out a controller or a phone or something is doable. Yeah,

Steph 26:58
exactly, yeah. So I just sucked up all the information and took it all to the doctors and the nurse and shoved it all back at them, right? And, yeah, excellent. That's awesome. That one terrific.

Scott Benner 27:11
So you said you just started kind of tracking what your a one Cs were not long ago. Like, what, what have they been since you've been paying attention to them? Yeah?

Steph 27:20
So like 2015 is when, when I sort of started tracking, they were like six low sixes. They had a couple of mid sixes, low, low sevens, pretty much all the way through to just before starting the pump, I was around 5.9 and then started the pump, and then it was coming down the Oh. And actually, just before it was 6.4 like, beg your pardon, then it was pardon, and then it was like 5.7 5.6 4.7 5.7 5.4 so it was, you know, coming down when soon as I switched to the pump, and I'm on a closed loop as well now, so I use Android APs. Oh, cool, yeah. So it dropped from 5.7 where it was hovering down to 5.4 when I started that,

Scott Benner 28:01
learning about carb counting in college, then was a big deal for you. Yeah, yeah.

Steph 28:06
I think meeting, meeting my friend Kenny, he was, he was a, he was a big change for me.

Scott Benner 28:11
Oh, that's awesome. So you feel like you were doing pretty well in that time in between, you just weren't, kind of like you weren't checking on it as often,

Steph 28:19
yeah, yeah. And I think maybe having that other diabetes, literally, and kind of the room next door made you a little more self aware,

Scott Benner 28:24
you know, why? Like, you have any insight, I think,

Steph 28:28
somebody to talk to about it, who actually got it, I guess, and bounce ideas off and be like, Oh, have you ever had this? So try this, you know, that kind of stuff, I suppose, right. Yeah,

Scott Benner 28:39
makes sense when you start thinking about having kids. So I if I heard right, because in the beginning, it always takes a minute to adjust to accents. So I'm pretty sure I heard that you're gay and that you're married to a lady and that you have a baby, but that you're pregnant. So IVF, I'm guessing,

Steph 28:57
yes, yeah. So my wife, Leanne, carried a first son, and this is my go.

Scott Benner 29:04
Did you flip coins or how did you decide?

Steph 29:08
Well, no, so I'm I'm just a year older. I'm like 37 so I'm not that much older, but I'm just a year older. So we started first. With me. We tried injury, uterine insemination first, which is essentially throwing the sperm into the womb and seeing what happens. Wait, did you do it yourself? No, no. So through a, I think is it called a cannula? I can't remember, but

Scott Benner 29:30
you went to, like a doctor or something like that. Yeah. Have you heard the episode about the couple who tried it on their own? I don't think so. Oh, it's awesome. Like she talked all about it. And anyway, it was, I can't, I can't go over the whole thing. It was one of my most delightful conversations. I feel like, okay, yeah. But her and her partner were like, they were like, they had a friend donate, and they were, they were like, just try to together. Oh, I was like, Oh, no kidding. So it was just a very. Like, somehow heartwarming and amusing story at the same time. But, yeah, yeah, it was really nice, actually. So you rock paper scissors, she gets to go first, and then you decide, is the plan always to have two and you're going to do it the way you're doing it here? Or were you like, Let's get one and see how it goes? Yeah.

Steph 30:16
Well, I mean, maybe there's always dies, but yeah, the plan was always kind of have two and try one each. Okay, you obviously never know, never know how it starts. We just got the advantage of having two wombs, so we've got, we're gonna have them quite close together,

Scott Benner 30:32
right? Yeah, you don't have to, like, space them out, like, you don't need the time to recover. No, exactly. It's awesome. She doesn't have diabetes, right? No, no. So was that part of the initial decision?

Steph 30:44
No, no, it was. It was literally just to try me first, and the first three tries of IUI didn't work, and I had to have a fibroid removed. Oh, okay, so in waiting for that, we didn't know how long we'd have to wait for the appointment to the operation, the recovery, so we just decided, oh well, sure, let's go and see how your womb was looking.

Scott Benner 31:03
She's like, I'll take care of this. But I'm imagining there was a sadness there, right? Yeah,

Steph 31:09
I think, I think it was a little bit, yeah, it was. It was probably just like, right? We'll get this fibroid removed, and then we'll see how we go. But, okay, yeah, yeah, maybe there was, but at the same time we, we wanted kids, whichever way. So that was, that's the ultimate goal. Really

Scott Benner 31:26
awesome. And then you, then, now, did you have to have a bunch of treatments and, like, what's that like? What's IVF like with type one?

Steph 31:32
Yeah. So it's, it's no different other than, yeah. So all the drugs and everything are the same. The The one difference is that the fertility company wanted a letter from the diabetes consultant to say it was going to okay to go ahead with a pregnancy, which still annoys me, to be honest, because you wouldn't be able to stop a heterosexual couple trying. Why would you need a letter for

Scott Benner 31:53
me? If someone came in there without diabetes and said, you know, we've got this sperm, I need you to put it in my lady over here and let's make a baby, they wouldn't say, What's your blood sugar? No, right? And that person, by the way, could be walking around with pre diabetes. Nobody would know. Yeah, yeah, yeah, interesting. But they made you prove. What was the proof that they were looking for? Or was it just the doctor to, like, take them off the hook?

Steph 32:16
I think so probably, yeah. But it was just that the control was good enough, essentially, okay. And you were doing great already, yeah, yeah, yeah, because we'd been trying bi UI beforehand, so I'd been cracking down kind of even more so before that. Okay?

Scott Benner 32:35
And you were a pump. You were wearing a pump during the pregnancy. Now, yes, I am, yeah, Omnipod manual, or, like, the dash, or using Omnipod five.

Steph 32:43
No, the dash, and then, yeah, Android APS, okay,

Scott Benner 32:46
oh yeah, I'm sorry, Dexcom, right, yeah. And so Dexcom g7, six. Do they have the seven there yet?

Steph 32:55
I've not seen any around, and I've not heard of anyone in our, like, little WhatsApp groups having it yet? No, there is talk of it, but I don't know anyone actually using it.

Scott Benner 33:05
I'm going to make a left turn here. How do those WhatsApp groups work out? Everybody always tells me, Oh, I'm in a diabetes Whatsapp group. I hear it all the time. Like, is there? Like, is it a few people, are they local to each other? Like, how to like, how do you guys talk to each other? What's it for?

Steph 33:19
Well, I mean, it's, I guess it's like minded people, or like living people. It's just we throw questions. I think there's about 2020 Oh, sorry, I touched the mic. 2025 people. They're actually not local to me. Well, relatively local. They're in, like, Sheffield, and I'm in Yorkshire. It's maybe two hours drive away, but we just throw stuff out at each other, like, Oh, hey, I don't know how to do this. I've got a problem with this on my pump. I've got a problem with this. MDI, any ideas how I can, you know, I've got I'm ill today. Any idea what the Sick Day rules are?

Scott Benner 33:56
Are people kind to each other? Do you ever have problems with what they call assholes?

Steph 34:02
No, no, not really, at least not on this group. No,

Scott Benner 34:05
because I the reason I ask is because I've been approached a lot of times, and people are like, Scott, you should start a Juicebox Podcast, Whatsapp group. And I'm always like, Oh, that feels like more for me to do. But so like, how do you get into it? Can anybody get into it? You have to have the link to get in. Is it moderated?

Steph 34:23
Not moderated? You do have to have the link to get in. But I met, I did a Daphne course. So it's a Yeah, dose, yeah. So I did one of those. Said I was going to get, you know, trying to get pregnant. And one of the ladies on that said, Oh, I know a lady that's been pregnant before, or a few ladies, she has a WhatsApp group and passed me on to her. She did. The lady added me to the group. And yeah, they meet regularly. Actually, I don't because I'm that bit further away, but they meet quite regularly, and it's just, I think, a nice place to be around people that are the same.

Scott Benner 34:56
I'm inclined to get behind it. But. Because the group experts that are in my Facebook are you in my Facebook group? Yeah, yeah. Okay. So there's some lovely people that donate their time to just kind of look after the group. And, you know, flag things that look like they're going wrong so I can see them. And, you know, help people with like, oh, you should try this episode of the podcast. They're really, really great people, but they all have a chat together so that they can, kind of, like, you know, stay connected. And I've been told by more than one of those people that it's turned into, like, a lovely little community just for them. Yeah, yeah, oh gosh, yeah. Do I have to do this? Like, what would I do? I just start it, and then I'd be like, here, don't kill each other, like, like, when you give your kids a BB gun. Is that what I would do?

Steph 35:42
Maybe, yeah, I think I also, I think there's not, you're not allowed enough. You wouldn't be allowed enough people in the group. I think there's a limit to how many people are in the group. So, oh, really, yeah, so I don't think you'd have enough.

Scott Benner 35:53
Oh, yeah, my face, my thing's pretty big. Okay, I'll look into that. Yeah. IVF, not much different. It's not different as far as the drugs you get. So did they impact you, or, like your blood sugars? Is there anything special to do, to do IVF with, with insulin? No.

Steph 36:09
So I thought there would be. I thought I would have to, I thought they would start impacting me, because one of the things you have to take after you've had embryo transfer is progesterone. So I thought that would probably be like a little hidden blood sugar booster. It did eventually, but, but no the drugs themselves. So we had, you've got, like a stimulation drug, which stimulates more follicles to grow, containing more eggs, or containing one egg, but more follicles containing an egg, and then you have, and that didn't seem to have any effect on me whatsoever. Then you have, I think, five days after you start taking that, you have one to stop you ovulating. Because if you imagine you're growing loads of eggs in there, and they're growing nice and well, and then you just ovulate them all out, that would be, be a nightmare.

Scott Benner 36:56
We've got all the where'd they go? Oh, come on, exactly. Yeah.

Steph 36:59
Or if, if you happen to be in a straight couple and decided to have some fun, you wouldn't want all of those fertilized at the same time, right? That would not be good

Scott Benner 37:10
either, the living dead with babies. Just like, yeah, yeah,

Steph 37:15
right. So yeah, you're on those two injections. And again, neither of those seem to have any impact on me whatsoever, which was great. You then sort of get to the point where you're, they're ready to collect all the eggs, and you have a trigger injection to do, which triggers ovulation. But that didn't affect me either. And then 36 hours after that, they collect your eggs. So I'd made a separate pump profile for that, actually, because it's, it's a conscious sedation. The egg collection only lasts maybe 15 to 30 minutes. But I'd made a a separate pump to make sure my blood stayed flat during it, okay, so essentially making it a little more aggressive, all right? Um, so if I did start to peak, just it would, it would hit it a little harder, yeah, but I didn't see the end of the operation because I asked for more drugs, so they put me asleep.

Scott Benner 38:05
Was it uncomfortable? Yeah, I

Steph 38:09
hadn't heard of anyone else being awake properly, awake and able to look at the TV screen, watching it happen. And I think it got to a point where I could just, you know, see and feel, and that was a little too much, so I just Yeah, her nice disc. Grab some more drugs,

Scott Benner 38:24
please. I'm tapping out. That's a good I'm good. I'd like to go to sleep

Steph 38:28
now. Yeah, I've seen the eggs. Thank you. Bye. I watched

Scott Benner 38:32
my carpal tunnel surgery on the monitor. Oh, I didn't get carpal tunnel surgery because I had carpal tunnel I had a bad injury on my hand, and they did carpal tunnel surgery to alleviate the problem. So, but I got to, I got to watch it. I was fascinated by it, so they, and they just blocked, like I just couldn't feel from my shoulder to the tips of my fingers, yeah? But you were like, No, that's okay. I'm good. No, I seen enough. Yeah, that's it. I have a memory. I'm gonna go now, yeah, exactly. How many times did you have to do IVF before you were like, the insemination before you were pregnant?

Steph 39:08
Like, yeah, fortunately, just once, yeah. So we got two, two embryos that grew were able to be frozen. So we did the egg collection in January, and we went for transfer in April. Because if we'd had done it fresh, we would have had Irish twins. It would have been less than 12 months apart. So yeah, we didn't want to do that. Yeah, yeah, we first go, which was very fortunate, awesome, but good for

Scott Benner 39:34
you. Do you think you'll use the other egg one day or no,

Steph 39:36
we think we're good with the two. I gotta tell you, sorry. We've still got another one, but I think we're good with two. Yeah, I have to be

Scott Benner 39:45
honest with you, I was talking to a guy yesterday, was like, one of seven, and I'm like, oh my god,

Steph 39:50
yeah, that I don't understand many things about how more than three, like, how

Scott Benner 39:56
to manage all those kids. Or are you wearing the same sweatshirt? You were wearing seven years, you know, 17 years ago, because you can't afford another one. Well, that's great. So how far along are you? Are is that? Are you far long enough to tell us?

Steph 40:09
Yeah, so 28 weeks today, actually, today. Awesome. Oh, you're getting close. Yes, officially into the third trimester.

Scott Benner 40:18
How about that? You got like, two more months, I know crazy. Nine more weeks left at work. Do we know what kind of a human is in there? A boy or a girl? Yeah, we're having another boy. You're on the podcast today. Steph, could tell me that this little boy's name is going to be Scott. Is that right? We could maybe stretch your middle name. Oh, my middle name is terrible. You don't want my middle name, so you'd have to put Scott. Yeah, exactly. Great. I'll listen, if that happens, I just want you to know you'll be crowned the best listener. You get to come on once a year and talk about whatever you want. It doesn't matter. You know, that's all No please, no pressure. I do have a puppy named after somebody now, also also Arden. Somebody named a baby Arden because they heard the name on here.

Steph 41:03
Yeah, it's, it's not a name I've ever heard of until I started listening,

Scott Benner 41:07
yeah, and then I told Arden, and she was like, Oh, I wish that wouldn't happen.

Steph 41:12
Yeah, it's fine that it is, just don't tell me, yeah, yeah. She's like,

Scott Benner 41:17
I don't know how I feel about that. Yeah, but, oh, but seriously, congratulations. You don't need to name your baby after me, even though, I mean, does sound like I am? The reason why you're using it? Yeah, it's probably not a big enough reason to name Can you imagine? Like, Fast forward 20 years you're 57 years old. You're at your your kids graduating from uni, see, I said it Hey, and he looks at you and he goes, Mom, I've never asked you, where'd you get my name Scott from? And you've got to go, I named you after a podcaster.

Steph 41:49
Well, you know what? Though that might be very cool. Then

Scott Benner 41:51
maybe, I mean, I don't know, like, once again, he'll come back listen to the podcast. Like, dude, there's some old guy talking about diabetes. This is who I'm named after one and he's American on top of everything else. Yeah, I'm sure that'd be fine. Oh, that part's okay. I didn't know, yeah, by the way I looked while we were talking, you can have 2000 people in a whatsapp community. Oh, that's more than I thought. Yeah, it's not enough, but it would probably make it on, like, unruly if there were too many people in it to begin with, though.

Steph 42:19
Yeah. I mean, to be fair, I don't even know whether people would read half the Yeah. We

Scott Benner 42:25
just it would just blow by them, right? Yeah. Like, there's an argument to be made that you make, like, a juice box, Omnipod community, a juice box, Dexcom, like, like, do that, right? Maybe that's not a, I don't know, or even,

Steph 42:39
like, narrow it down further, anyone on loop by anyone on the other kind of loops.

Scott Benner 42:43
Yeah, jeez, that sounds horrifying to me. Does this cost money? Do I have to pay for this? No, no, you say no, but I don't know. There's also a business version of WhatsApp which would let me moderate it, and then I gotta hire a moderator who's paying for that. That Are you? Are you? You want to pay

Steph 42:59
for it? No, like your ads. Get ads for paying my

Scott Benner 43:04
electric bill. You wanted to pay for this too?

Steph 43:08
Yes, you're gonna have to keep going for a few more years. How much

Scott Benner 43:12
more content you want me to make? I'm I'm in this room recording podcast night and day. Oh my gosh. What made you want to come on the podcast?

Steph 43:21
Uh, yeah, well, to be honest, it was, I mean, at the time, when I reached out, it was like, I thought maybe I could offer some advice. That's, that's not necessarily the word I'd use, because it's me, but offer some, some comment on IVF and pregnancy and what it would do to your blood sugars. So, yeah, the drugs themselves didn't really do anything, but when the pessaries, the progesterone PES sort of started that did, that's when it started to kick in, which, in some ways, is kind of to be expected, because that's kind of what happens around a lot of people's periods. They once that started to kick in. I needed to increase my profile, 10% up. You know, 5% 10% 15% up. Then I needed to start doing more, Bolus for meals, correcting after them more. So just all of those sorts of things started to kick in. And those pessaries, those progesterone pessaries, last up until 12 weeks. That whole first trimester is a lot of back and forth. In some ways, because you've got, you're battling with, maybe, well, you've got the progesterone from the pessaries, but you've also got your own progesterone, I'm assuming, being made. So maybe, like a double, double hit, yeah. But then there's also where it starts to kick in. And it did also kick in for me, where you, I don't really know whether you start making insulin. So I have heard it from the podcast, and I've heard it from others too, that, like you, maybe start making insulin again, which I did see also, but not necessarily, until after the pessaries had stopped. So Well,

Scott Benner 44:54
hold on, what do you walk me through that? What are you saying that? So they they give you something. And you feel like your insulin resistance, or like your insulin needs went down, or you because how would you know if you were making more insulin or not?

Steph 45:07
Well, I've read Jenny's book, actually, I I've hired Jenny, actually, to help through this pregnancy, which is lovely. She's an absolute legend. Through her book and some of the podcast stuff, I think I've listened to you're either more sensitive, and it may be that, or you start because your immune system backs off, you start making insulin again, maybe Okay, which I didn't, I didn't expect to happen, because I've had it, you know, nearly 30 years, or 30 years now, and I didn't really expect anything to be left in the little pancreas there, but just kind of around the time when the progesterone pessary stopped, I just had absolutely massive sensitivity. I could eat, you know, you know, a huge ice cream and some jelly sweets and not need to do any insulin for it, which sounds on face value, kind of fun, but you constantly feed, eating and feeding, feeding your lows you don't really want to keep eating. So I think that's probably one of the things that would be maybe a little watch out once that progesterone is like, you stop taking those progesterone the series, then that might start to kick in. And it was quite quick.

Scott Benner 46:19
Yeah. So the theory is that your immune system, which is trained on your beta cells for reasons that you know or whatever are, suddenly, like, there's a baby in here, and then you hear a lot, right? Like a lot of pregnant women don't get sick usually, yeah, right? Like, healthiest time in my life, except for the big thing growing in my belly. Like you hear people say that, right? So is the idea that it's possible that you're the immune attack on, like, beta cells is varied by

Steph 46:48
this, yeah, apparently, yeah, that's crazy. Okay, yeah. And it was, it was always, it was around, like, Bolus. Majority at the time it was, you know, I'd, I'd have to do, I'd do my regular Bolus, so then I'd do less the next day and less the next day, and I'd still be like fighting it. We went on holiday for a couple of weeks in June, where I think I was, I don't know how pregnant I was, then I was able to eat just everything I you know, it was wonderful on one hand, but on the other hand, it was, there was about 10 weeks, I think there, it was hard, on the other hand, because I was just constantly having to have dextro sold. Like, I, you know, do you have dextro solar, the, like, Lucas a tablet? Yeah? Sure, yeah, yeah. I just had, I've never been through so many in that like, sort of two, three month period. I've never eaten some money in all my life, okay,

Scott Benner 47:41
yeah? Because just you needed it constantly, yeah, yeah. Listen. A tiny bit of Googling, I found an article that the conclusion of the, you know, I'm not going to read you the abstract and all the other stuff, but the conclusion is, in summary, we have found that some C peptide secretion that is an indirect measurement, of course, of endogenous insulin production is regained in women with type one diabetes during pregnancy, which might be attributed to elevated peripheral levels of PRL. PR, okay, one or GCG, I mean, look more into that on your own, if you like. But that's the real Yeah. Like, I'm not, I don't pretend to understand it one way or the other. But that's, I mean, that's an interesting thing in general, yeah.

Steph 48:25
And it, it, it definitely happened like I, I was, you know, before pregnancy, I was maybe using 3040, units a day. And by 12 units, I was by 12 units. By 12 weeks, I was somewhat like 26 to 33 units a day, and I was eating more, you know, yeah. So it's, it was, it was pretty drastic, really. I think at one point it went down to because, because of the APS system, you don't necessarily have a fixed basal rate, because it can adjust it. I was down to something like 444, units of basal, right? And, you know, before it was, you know, maybe 12, okay, boy, it's crazy, yeah, yeah, it was, it was, it was huge, really. I mean, now it's completely different at 28 weeks. So I went from, yeah, take 2430 units. Now at nearly, I think I'm, I don't know. Let me just have a little look. I think I'm at some like, I don't even know, yeah, yeah. I think it's like, over 100% more. So which is, yeah. So I'm on about 55 units, say. So I've gone from 24 ish to 55 right? And most of that has been in the last three weeks or so.

Scott Benner 49:45
And then you're expecting that to kind of stay here till you deliver the placenta, right? Well, to be honest,

Steph 49:51
I expect it will probably raise more again. I think you're supposed to plateau somewhere around maybe 36 weeks. You get a little bit of. Leveling off. What

Scott Benner 50:00
are you able to keep your a 1c during the pregnancy?

Steph 50:05
Yeah? So I'm like, 5.3 5.1 look at you. That's awesome. Yeah? I mean, it's taken a lot of work. And like I say, I've got Jenny and Integrated Diabetes on board, which, honestly, she's an absolute rock star, yeah? Just, we can't be NHS here. Just, God loves the NHS seriously, but they don't have the capacity to give the kind of care me personally need, because I feel like I've and again, the podcast has done a lot for this for me, but I feel like I know too much that they can't actually help necessarily give me any advice,

Scott Benner 50:36
right? There's still a ceiling above your knowledge, and you need somebody else to help you with it,

Steph 50:40
yeah, yeah. And then that's where, like, Jenny comes, swoops in, like, once a month, but she's, we have emails maybe once I should week.

Scott Benner 50:50
Okay, I actually just recorded with Jenny this this afternoon already, yeah. But what do you think she gives you? Like, I know her, not like, I set aside her knowledge. Like she, she kind of knows how to react, but like, is she a sounding board, or is she someone who looks at you and says, Let me see this. Looks at your graph and goes, we're turning this up this much. I think

Steph 51:09
both, depending where you are with your knowledge. I think she does both because I and I've learned. I know I've learned as these 28 weeks or 20 weeks I've been talking to her, I've gone on. I know I've learned, because I'll go back with a bit of an analysis of what I think I need to do, and she'll say, Yeah, that sounds good. But do this and it will be stronger, you know, it'll be a bigger change, yeah, and that's possibly a bit of fear, because I'll, you know, I'll be changing my basal point two, or, you know, you know, small amounts, or my insulin sensitivity factor, I'll be changing 0.01 and she'll come in and be like, No, we changed that by one. And I'm like, Whoa, okay, but it works, yeah, so yeah, it's, she's she's just completely made it easy. Just she goes in, looks at your graph, looks at your profile, and says, change this at this time, this at this time, this at this time and try it out, and it's it's been amazing. It's

Scott Benner 52:04
tough. I mean, it's got to be tough. I don't know if it's tough because I don't have diabetes, but it has to be tough to make big changes then. So it must be scary. Like Arden came home for a long weekend last night, and we went to a restaurant. When she got home, there was a bunch of her friends, and and we're sitting there, and I and we ordered, and I'm looking at her, and I'm thinking, she gonna bowl us, like, like, now's the time. Like, you know what I mean? So I wait a couple minutes. I see her talking with her friend. She looks tired from driving home. And I look across the table, and I just, I point to my phone, and she picks her phone up, swipes it, goes to look at it, and just, you could see her face. She's like, here, and she just gives me a phone, just like, you know, like, you know, I bitch at him the whole time I'm at college. Leave me alone. I know what I'm doing, but she was like, whatever. Here, man, take it. And so I made a Bolus. And I mean, she's using trio, so, you know, you're using Iaps, like, you get the vibe, right? So, yeah, I'm like, there's some french fries along with what's on the table. I'm figuring, like, she's gonna hit those fries. I actually entered in carbs and fat and a little bit of protein into the algorithm to give it all like this, this working, and she had, like, a little rise to 150 and came back down. And I thought, okay, I could have put more fat in, and I didn't, but still, 150 like, you know what I mean? Like, she had like, boneless chicken wings and like, fries and some other stuff. Like, I was like, I thought that was awesome, you know? And then I look back at her from like, you know, when she's at school, and I'm like, Are you like, Pre Bolus thing? And I know she's not, like, you know what I mean? Like, I know she's just like, she's too busy and she's overwhelmed, and she's at school, and she's probably running around, running around, sitting down and bolusing as she eats. And I think that's the Now, listen, she's still gonna keep an A, 1c, in the mid sixes at college. If you were here for a night, like we were having dinner, do you think you'd have the nerve to be like, here, Scott, just give it a whirl or to somebody else. Like, if you were with Jenny for a night, I Jenny would be like, Here, take it right? Oh,

Steph 54:06
yeah, take it forever.

Scott Benner 54:10
Imagine if that was her, like, that was her retirement job, like a really rich person with diabetes, like she just hung out with them and managed their diabetes for

Steph 54:17
them. Yeah. I, I think, I think that wouldn't be too far, far of a bad deal, really. Yeah,

Scott Benner 54:22
yeah. Can you imagine I one time somebody contacted me privately and offered me an obscene amount of money to come to their house for a week, for a week, yeah, and teach them how to take care of their diabetes.

Steph 54:34
Some consideration all

Scott Benner 54:37
the people out there who like don't like me, I 100% immediately turned them down. And I said, Keep your money and listen to the Pro Tip series. I basically think it's gonna the same thing is gonna happen for you. Yeah, yeah. And it was an obsession. It was a lot of money. And I was like, that's nice, but you know, no thank you. Now listen. Anybody listening who has a lot, a lot of money? You. Still free. Feel free to reach out, but,

Steph 55:03
yeah, you don't times change. No, I would probably

Scott Benner 55:05
end up just saying to you, that's very kind, but you know, I would just try the Pro Tip series if I was you. Yeah? Plus, I don't want to be murdered in someone's home. So,

Steph 55:14
yeah, big consideration.

Scott Benner 55:17
Most of you are all lovely, but a couple of you are out of your minds, and I don't want it to be one

Steph 55:22
of you. Yeah, absolutely. And it guaranteed would be, wouldn't it? Oh,

Scott Benner 55:26
oh, for sure. There's someone out there like, I can kill this guy for just this much money. I was gonna be great. So your pregnancy has been following along. You've been using Jenny to take care. You got a couple more months till little Scott comes out, and then yeah, is Scott even, like, a British name? No, right? Yeah. Is it Oh yeah. What does it sound like in with your accent, Scott, I might like it better than when I hear it here, because it's a little more melodic when you say it, oh, it's so like Kurt. You know what I mean? Like, Scott, yeah, like, it's a, it's a, two sounds, not great. I don't know. I don't

Steph 56:07
not the point. Well, it's your own name. I think as well, sort of, you don't necessarily have the best of feelings for your own name. I think sometimes I hate mine. So really, do you think that's true? Yeah, yeah, you can pick fault with it, because it's there forever, isn't it? So you're just looking at it.

Scott Benner 56:22
Yeah, I to your point. Meanwhile, I have no idea what I would name myself if I could, like, No, make up my own name. My middle name is horrendous. I will never that's actually a running joke on the podcast. So now there are people like, just say it. But I, I

Steph 56:36
will not. I was just thinking, I don't think I know it. No,

Scott Benner 56:39
you don't, and you're not going to, not from this, yeah, I'm sure there's somebody working at the IRS who's like, I know his name. Yeah, I'll

Steph 56:47
just join the podcast and drop it in one day. There are people another podcast, the WhatsApp group,

Scott Benner 56:51
yeah, yeah. That would be, I'd be like, well, I can't believe you guys figured it out. But there are people who listen that are, like, in the Secret Service and, like, there are people who have all kinds of crazy jobs to listen to this podcast. So it definitely, yeah, it's pretty and it's never who you think. Like when someone comes up to you, they're like, I work for this. You're like, Get out of here. Really,

Steph 57:11
that's funny. You meet all sorts of, like, interesting, fun people through this.

Scott Benner 57:15
I, honestly, I do. It's a, it's a real benefit for me, just, it's a great, great. Like, benefit of the of the podcast, meeting people, as long as they don't murder me in their homes. Because, yeah, I was gonna say, what else do you want to talk about? But I guess my real question is, what are you expecting? Like, what's your expectation for these last two months? What's your expectation after giving birth? Are you going to breastfeed? Like, are you planning ahead for that? Yeah,

Steph 57:41
I think the next two or three months, I think I am, like, sort of said, expecting a lot more insulin to come into need. Like, especially this, this last couple of weeks, just the increase has been kind of crazy. Like, I mean, I don't know what's it's crazy for me, changes of, you know, carb ratios from 14 to 10 and or six to 5.2 for just that, they're big, they seem massive to me. You know, like 20% change is just on a whim overnight. Seems absolutely bizarre. I'm expecting that to kind of keep going, probably Yeah, and then yeah for birth, well, we had a scan, actually, on Wednesday, and he's measuring a little big which is, yeah, I think

Scott Benner 58:25
medical stuff. It was that, like my vagina, or what were you? Are you thinking just now?

Steph 58:32
Yeah, a little and also, the doctor kept saying, and this is definitely not the medical term, but it is what she wrote in my notes. Big baby on board.

Scott Benner 58:41
Did she let you see that? Yeah, yeah.

Steph 58:44
And she used it three or four times. And I was like, Stop, please. Stop saying that. Hey,

Scott Benner 58:49
honey, Listen, can we find another way to, like, jot that down that's making me upset. Yeah, just if you ask Arden about having a baby, the only thing she'll say is like, I don't want that to come out of my vagina. And I was like, okay, so big baby, but your a one, Cs are nice, right? I

Steph 59:05
know, yeah, it's, it's, it's a bit confusing, for sure. Well, not confusing, because maybe it is the way it is. But I think the the obstetric consultant was like, You need to get your diabetes under better control. And then I went over to the next room to the diabetes consultant. She was like, you're essentially, like, top diabetic I have under my care, and offered me no advice. Yeah, thanks

Scott Benner 59:30
for all the help. Everybody. Yeah, Jenny, Jenny, so Jenny is your doctor, basically, Yes, Jenny is basically

Steph 59:38
my doctor, yeah. So I just, I'll keep it going. And I've obviously seen a birth and I understand where it comes from, having also got one, so it didn't put me off.

Scott Benner 59:51
Good to you. What a trooper. Do you know the donor? Like, do you have like, an idea of, like, birth weights from other, like, family members?

Steph 59:59
No. No, not at all. We just, we know, like his weight and his height and stuff like that. But nothing of, yeah, nothing like that.

Scott Benner 1:00:06
Is your donor, the donor from your first

Steph 1:00:09
Yes, so yeah, just about say, and Rory was like 8.5 pounds, so pretty, pretty regular. So yeah, we'll just have to wait and see if it ends up being a cesarean, because too big. Fine. Yeah, we'll just go that way. But, yeah, breastfeed, and I'd like to do that, hopefully that that pans out. I know there's a lot of snacking involved around breastfeeding to keep your blood sugars up, so I'm quite looking forward to that. Now I can't eat carbs in the way I used to be able to do. You miss them. Be

Scott Benner 1:00:41
honest, you miss them more. You miss the alcohol. More. What do you miss

Steph 1:00:44
more? Probably the carbs. There's

Scott Benner 1:00:48
a telling statement from a lady who was like, they used to carry me home.

Steph 1:00:53
I've grown up so much.

Scott Benner 1:00:56
What food do you miss? Probably just

Steph 1:00:58
things like, I mean, not, we didn't have them often. But, you know, like, fish and chips, and English fish and chips, which is horrendous to deal with, like, a curry with, like, all the naan and the papadoms and everything, yeah? Like, there's no way I can eat all of that. Now it would. It's just not worth

Scott Benner 1:01:13
it. You could. You'd be fighting with it with a massive amount of insulin, yeah, yeah. So the fried food, no, and a lot of the bread. No, yeah,

Steph 1:01:22
okay, yeah, gotcha, but yeah. So I'm looking forward to meeting him and having him out, being able to not be as tightly controlled. And I'm pretty sure that first couple of weeks, I'm going to just let it be Well, that was

Scott Benner 1:01:37
my question. I'm always interested in what people do afterwards, because they I've had a lot of ladies tell me that, like that placenta gets delivered and your insulin needs just change and and so. And normally, very much they go down, yep. But then you're gonna you start breastfeeding and burning those calories and making the milk and everything. And now you could be fighting with lows. And then what they mostly, what I most remember from the conversations is people telling me that it's like, look, I paid such close attention to it for all this time, like, it's and now the baby's here. You're paying attention to the baby, and you're the easiest thing to give away. Oh, yeah, when you don't have time, you know, yep. So is that a concern for you? Or do you almost looking forward to it? Or how do you think about

Steph 1:02:19
it? No, it's, it's not a concern. I think I'll probably leave it be, not leave it be, obviously, I'm doing something, but I'll, I'll definitely not worry in the first couple of weeks, I think, I think I will eat a donut, maybe every day and and just be like, Yeah, sure. I'm sitting at 14. It's, it's fine for now, I think I've learned so much over this period of time that I don't really want to give it away. What's the point? You know, I thought I was pretty bold with insulin, relatively anyway, but I now see that I'm not. I could be a lot bolder. So, yeah, I think probably a couple of weeks I'll just not really give a crap, and then then get it back in line, back

Scott Benner 1:03:02
and you don't. I mean, listen, for my money, like I obviously don't know. I'm not a woman, and I have no idea what any of this is like, other than I've watched a one girl go through it twice, but I would hate for you to give it away when you're when you can do it, because it's going to be less intervention and less help. It's going to be less than it was while you were pregnant. You're doing it now. You'll be able to do it for yourself. And then you get to stay around for a long time and watch the baby grow up and stuff

Steph 1:03:26
like that. Yeah, exactly. And I get to keep my eyes and all the

Scott Benner 1:03:29
other good stuff. There's a, you know, it's funny, you and I are gonna say goodbye in a moment, but I have, like, a message in front of me that there's a Facebook post that I should go look at, and it's from one of the group experts. And he's, he's basically, he's going to tell the story in this long post about, you know, what his control was like prior to the podcast, finding the podcast, pulling himself together, and then, you know, which is great, because he's doing great now, but it was not in time for for his eyes. And so he's just gone through treatments. It's crazy. But for the last couple of weeks, he's been blind. The last couple of weeks, Oh, wow. So he, he had, you know, like, a catastrophic thing happened in his eyes that they're, I think, thankfully, able to help him with. And, you know, he's over, he's regaining a site. But for that time, like, it's, it was that bad, yeah, you know, so that's crazy, yeah. And it's a thing you don't talk about a lot, because I'm not, I'm not a real like, in favor of, like, scaring the hell out of people like to get them to take care of themselves, person, I think, generally speaking, that doesn't really work unless you're in the right head space for it, which is, you know, I don't know how to tell who's in what headspace when I'm talking into a microphone, but it isn't, it isn't, not to be brought up. You know,

Steph 1:04:45
no, no, for sure. It's, it's, it's like, that thing, you know, is there, but you don't necessarily talk about, yeah,

Scott Benner 1:04:53
yeah, no, exactly. But still, it's, you know, there are plenty of people also don't know. You. Know, yeah, yeah. Nobody ever tells them like they this could be the outcome of this, if you don't you know XYZ. So anyway, I appreciate this very much. Thank you for doing this with

Steph 1:05:10
me. No worries. Thank you very much.

Scott Benner 1:05:19
Us. Med, sponsored this episode of the juice box podcast. Check them out at us. Med.com/juice, box, or by calling 888-721-1514, get your free benefits check and get started today with us. Med, 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 than 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 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. The Diabetes variable series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about, travel and exercise to hydration and even trampolines. Juicebox podcast.com go up in the menu and click on diabetes variables. 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 you.

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#1452 Three Little Birds

Jenny, NICU nurse and mother of three, recounts her youngest son’s leukemia relapses, T1D and autoimmune challenges amid family history.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome back friends to another episode of The Juicebox Podcast.

Jenny 0:13
My name is Jenny. I actually am a NICU nurse. I am a mother of three kids, happily married. I have a nine year old son, Johnny, who's my T Wendy, an 11 year old daughter and a almost 14 year old son. Please

Scott Benner 0:27
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 health care plan or becoming bold with insulin. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juicebox, it should not take you more than about 10 minutes when you place your first order for ag one with my link, you'll get Five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. This episode of The Juicebox Podcast is sponsored by cozy Earth. Use the offer code juice box at checkout at cozy earth.com and you will save 40% off of your entire order. 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 mis boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox

Jenny 2:09
My name is Jenny. I actually am a NICU nurse. I work night shift. I am a mother of three kids, happily married. I have a nine year old son, Johnny, who's my diabetes, my T, 1d, 11 year old daughter and a, almost 14 year old son,

Scott Benner 2:26
Anthony, 1411, and nine. Your youngest has type one, my youngest, yep. Okay, that's your son, yep, or us, boy, girl, boy, yep. Boy, girl, boy, and you have something going on too, or No? No, no, it was for me,

Jenny 2:39
no. But Johnny has had a very extensive prior history before diabetes. Okay, we'll get into it then, which would be part of all of this.

Scott Benner 2:47
Yeah, so let me just ask you, like, some foundational questions, do you or your husband or people in your family have other autoimmune issues? The

Jenny 2:55
only thing I know is that my mother in law has rheumatoid arthritis, and her mom had lupus, lupus and RA, okay, so, and then my dad's side of the family, I didn't grow up with my dad. I did reach out to my half sister about diabetes, and she didn't know anything about it. But I don't know if there's other type one or other autoimmune on that side,

Scott Benner 3:15
okay, but you don't have celiac or hypothyroidism, no, okay, and your other two kids, any issues?

Jenny 3:21
No, I had them both tested after he was diagnosed, and they were both negative. Okay,

Scott Benner 3:26
when does the diabetes come up? He's nine. Now. How old was he when he was diagnosed just after

Jenny 3:31
his eighth birthday? Like, yeah, about a month, a little less than a month after his eighth birthday.

Scott Benner 3:35
This has only really been a year or so, a year and a half, yeah, okay, do his other issues come prior to that? Yes,

Jenny 3:44
when he was 23 months old, he was diagnosed with leukemia. Okay, so that was a couple years of intense therapy. He had relapsed twice. So he actually had two bone marrow transplants, or aka another stem cell transplants. The first transplant, he ended up relapsing about eight months later. That transplant actually gave him a lot of side effects called graft versus host disease, where the donor is attacking your body, so he broke out like in a rash. He had a lot of GI issues. We actually had ulcers in his stomach, and he also had some changes in his lungs, so they were calling it lung GVHD. Also,

Scott Benner 4:24
how do you I, you know what? I have a lot of questions already, but I'm gonna go back to the beginning. First, you've got two kids. Your life's chucking along, fine. You have a newborn, less than two years old. How do you notice he's sick? Like, what are the first things that come up? It

Jenny 4:39
was when, like, around Christmas time of 2016 he just started to, you know, act sick, right? He having had a cough and whatnot. He wasn't in school yet, but my other kids were in school. You know, I thought he ended up having, like, the flu one day. He was kind of limping. He had some bruises on him, but I didn't think it was anything abnormal for, like, a. Two year old kid who's active, right? Yeah, I took him in to see the doctor, and she looked at his legs, and she's like, well, I don't think there's anything going on. I don't think we need an X ray. But she looked in his ears. Oh, he has an ear you know, looks like he has an ear infection. So I was like, oh, okay, maybe that explains his wobbliness. Maybe there's some dizziness, I don't know. Came home with some antibiotics, and after several nights of that, he he would spike fevers at night, and then, of course, he had all the respiratory symptoms of having a cold or a flu. So I thought, well, maybe, as the flu is really bad flu, couple days of antibiotics and nothing, I didn't see any changes, he would still spike fevers, and one day, we're giving him a bath, and I saw along his spine, he had some bumps, right? And I thought, oh my gosh, I had made a comment to my husband that the bruises kind of make me think of like leukemia, right? And he got really upset at me, like, don't say that, you know. I didn't even know that. I guess my nursing background, but it wasn't like in my forefront. But anyways, whenever we put the kids to bed that night, I lay down on the couch, you know, on my iPad. I looked up like, how does leukemia present in children? And a lot of it was, you know, limping or bone pain, so kids going for X rays. And then I was like, Oh my gosh, you know, but the kids were already in bed. I was still in denial. I said, You know what? One more day, let's do, let's get through the

Scott Benner 6:23
night, yeah, why don't I get one more good night's sleep for the rest of my life? Yeah,

Jenny 6:28
pretty much, right. So. But then, of course, he spiked him a fever in the middle of the night again. So I called, I made appointment for first thing in the morning, took him into the doctor, and she said, I think you should just go to the ER and get all your answers. My husband was with me, with my 18 he was two, my three and a half year old. I said, Well, let's go home first drop Savina off with your dad, mom and I need it. Let's pack a bag, you know, because I knew I was like, This is what was happening. This is what was happening. And they were wanting to send us to a different hospital. And they said, No, we're gonna go to this other hospital, which is one I work at, because that has the stronger pediatric for

Scott Benner 7:06
you were a NICU nurse at that point. How long have you been doing it for? Since 2001 so 2023, years? How did you not burn out? Doesn't that happen to a lot of people?

Jenny 7:17
You know what? I work night shift, and I night shift is quieter, and I'm only part time. I work, I'm fully benefited part time, so I only do 212, a week, and I get benefits. So that's how you don't get burned out, burned out now, but not from that, just from everything else. Yeah, work is my break, my social hour, I guess actually it's my Juicebox Podcast time.

Scott Benner 7:42
Jenny, listen. First of all, I don't think people should be listening to podcast work, but I realize you do, and it's okay

Jenny 7:47
with me. Well, it's NICU. It's the baby sleep. I have downtime. I just

Scott Benner 7:51
have to say that, like a person talking about their home life and then going, I go to work in a NICU for relaxation, yeah?

Jenny 7:59
Well, especially during the pandemic. I mean, I had three kids at home, and I'm like, get me to work. I want to stay up all night. Have a break. I'll

Scott Benner 8:08
see you guys later. Oh my gosh. All right. No no. So Okay, wow. So your background tells you enough, the bruising, the limping, you figure it out, you get them to the hospital and has your husband like is he more on board at that point? Or do you think he finds out in the hospital? Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 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/juice box. When I tell you about cozy Earth, I'm usually talking about the discount use Juicebox at checkout to save 40% I don't think I take enough time to tell you about the quality of their products, superior softness and enhanced fabric that is durable and won't pill. It's guaranteed for 10 years. Temperature regulation, the cozy Earth sheets that I have are incredibly breathable. You're going to sleep several degrees cooler than normal. These products are made responsibly. They're. Comfortable, and there is a commitment to quality, so much so that you will get 100 night sleep trial on the sheets and a 10 year warranty. Why don't you let cozy Earth create a sanctuary within your home? That's your time. You want to be comfortable sitting in those sheets or lounging in your joggers. Maybe you've just returned from the gym or completed a hard day of work. Jump into the shower, and the next thing you know, you're drying yourself off. You feel like a princess. That's how I feel. I feel like a princess when I dry myself off with those towels. I really do same as when I get into the bed and when I put on these great clothes, cozy earth.com use the offer code Juicebox at checkout. You will save 40% off of the bamboo sheets, the bath sheets, or whatever else you decide to buy at cozy earth.com

Jenny 10:47
Yeah, I think you really found finds out in hospital. I didn't push it too much in letting him, you know, like this is leukemia while we're sitting there, because we were there in the morning and we didn't find out before in the afternoon, just because his his dad had was diagnosed with colon cancer. What about a year and a half before that? So I didn't want to, you know, yeah, stress him out anymore. Did his father pass? He did. He passed the sales in 19 Yeah, so August, yeah, this is after he died. Yeah, it was after, but

Scott Benner 11:19
after your son was diagnosed, yeah, exactly, I say. I say, okay, gosh, what's the treatment for Luke? I mean, you said they Yeah, but walk me through it a little bit. What they do the first time? Well,

Jenny 11:31
obviously we were admitted, he had to get a central line placed in his chest, right? So that entails, like, sterile dressing changes, etc, and that's so that I could get draw labs and take it take, you know, take labs in frequently, and they can get blood infusions and all that stuff. But it's chemotherapy. You're basically trying to hit the bone marrow hard, because leukemia is a blood cancer, and your blood is made from your bone marrow, your stem cells in your blood mirror. So you're trying to constantly hit it hard, because you want to kill all of your all those cells. So you have a cycle of that. You hit it hard, and then you wait, you know, a couple weeks or a month, your all your numbers go down, so your immunocompromised, and then they start to come back up, and then you hit it again. You're just constantly doing that. Okay, just

Scott Benner 12:17
my mom had, you know, cancer, and so we got to see her go through some treatments. But how is it different for I mean, it's got to be different for a child, right? I

Jenny 12:27
mean, yeah, definitely he. He's two years old, and one of the treatments was for him, like, an oral steroid. That's really disgusting, right? And here, with my kids sickly in this hospital, we're trying to shove this nasty stuff in his mouth, and he's like, not having it. So as a NICU nurse, I was like, give me an NG tube. They looked at me like I was crazy. And I'm like, now I'm not afraid of an NG tube. He's already sick. I'm going to be giving him all these meds and his, you know, it's torture, like I'd rather have the, you know, have the tube and less stress on him, you know. So it's a lot of medications, and days he felt good, days he didn't, I'd have to draw labs and drop it off at the New Year's lab. Sometimes we'd have to go in for blood products. Some of the medications would make him really sick. Sometimes we had to be inpatient for the medications because some of them were IV. Or if he had a fever, we'd be in the hospital.

Scott Benner 13:19
Yeah, did you place the tube yourself, or did you let them do it both?

Jenny 13:26
So he would get, because he's only two, they would sedate him to do all of this foam he also leukem is found in his spinal fluid. So that meant that he would have to get spinal taps where they would take samples. They would, you know, buy. Basically, they would sedate him about once a month to take samples of his bone marrow, also to do a spinal tap and inject three different kind of medications to attack the Leukemia. So I took advantage of those every time to put the tube in. Yeah, but there were times at home he threw it up. And at first couple of times I if we had a clinic appointment, then I would just let them put it back in. Sometimes we try to go out without but there was a couple of times where I, I was me and my husband did it herself.

Scott Benner 14:08
What was the early prognosis?

Jenny 14:11
It was not very good for him, because he had, like, there's all these different cytogenetics of the Leukemia and his his MLL rearrangement is complicated to explain, but basically, there was no data on his but it was similar to, like, an infant leukemia, and infant leukemia has got a poor prognosis. I mean, I did deep dives into all the stuff, you know, studies on studies and treatment and treatment, and I just, the way I had to get through it was like, You know what all of this data I'm looking at is from years ago, right? And then I know they're constantly targeting treatment to be safer and safer and safer, so I try not to focus on that. But it was, like, probably, I would say less than 40% that he would make it to five years. Wow,

Scott Benner 14:54
gosh. And then there's a reoccurrence pretty soon after, like, so when. Did they they proclaim Him? How do they talk about it?

Jenny 15:03
Yeah, so you kind of, like, by the second or third, end of the second or third month, you want to be at a certain level, and what if you get to that then, like, Okay, your chances are okay, right? So we continued with the treatment. But then about seven months

Scott Benner 15:16
into it, he relapsed, meaning those numbers rose again, meaning, meaning

Jenny 15:20
they found some abnormal cells in a spinal fluid. Okay, that basically we're like, Okay, we have to have a transplant now. Or the car T cells is another thing right now. They can modify your own T cell like, take collector T cells, modify them so that they can see the Leukemia within you, you know, attack your B cells, because it's B cell leukemia, but he was, he didn't qualify for that yet as a first line of treatment after relapse. So we had to go through this in more intense treatment at a lot of it in the hospital. And then after the first month of that, his numbers rose again. And then they said, Okay, well, that cop, that's kind of like a failure to our reinduction. So now he qualifies for T cells, I say, but we're going to do the T cells, but not. Some people now do T cells, and it'll make maybe cure them, or for long. You know, they don't have to have any more treatment for a long time, as long as they have the T cells. But they were like for him, we really think we still have to do a transplant. We use it as a bridge to get him in deep remission, where we like close to zero as possible, of no cells, because that's your best chance of cure when you have a transplant,

Scott Benner 16:28
I see now, and the transplant is the thing that ends up attacking him, is that? Right?

Jenny 16:33
Yeah, so we didn't have any good donors for him, because we all got tested like we were the most, seven out of 12 match. You know, in the registry, there was no good matches. They found a four out of six match of core blood that they decided to use. They were deciding between one of us as a half match, family match, which they can like manipulate the cells to not tech them. You as much. But they decided to go with the cord the first time. Okay, so we did that. And, you know, because his we because his spinal fluid was, you know, where he was relapsing, we were getting our transplant at UCSF, and they really did not want to do radiation on him, because he's only three, like cranial radiation, right? Our doctor was saying, Yes, his best chance of cures radiation, you got to do it, you know. So we had to struggle to make that decision. Or transplant. Who was the one? You know, UCSF telling us not to do it, and then our own doctor saying, No, you should, you should. But he's only three. So we decided, you know, a lot of these kids relapse again, so let's kick the bucket on trend, on the cranial radiation, and not do it this round, because he's so young, if he relapses again, then fine, we'll, we'll do it the second time, because we don't have a choice, right? But we'll buy him rain development time, you know, right?

Scott Benner 17:58
Can I talk to you for a minute about that. Yeah, two doctors say two different things. It's on you. I mean, you're a Nicky nurse, but tough. Yeah. I mean, it's not, like, what's your husband do for a living? He's an insurance broker, so he's not, he's not a cancer doctor. Then, yeah, no, no, no, yeah. So now you're like, you're sitting there. To me, it feels like somebody, it's agonized, oh my god, like somebody gives you money and then tells you you have to bet it up or down on a football game. And you don't, you don't know anything about the game or the teams, you just have to pick a side, right?

Jenny 18:29
Yeah. I mean, I think what ultimately made us like I said, is you want the best chance of life for your child, so you look at that like, if we were selfish, oh, we don't want to do this again. The Fine, let's just do it now. But ultimately, we're like, Well, if he comes out of his alive, we want his body the most intact and without damage. So we can't do the you know, because there's, there are a lot of kids who relapse again, yeah? Like, let's kick the bucket on the radiation. Yeah, just push it off. If you can push it off, as long as we can, Let's not mess with his brain. We're already messing with his brain, because he he's getting a lot of chemotherapy injected right into his spinal fluid, so we're already damaging it,

Scott Benner 19:07
and it feels like you're doing it. Is that right? Like when you make the decision, does it feel, I mean, or is that a, is that a?

Jenny 19:14
No, I just made, we just kind of made a decision. And you know, you're good, you're

Scott Benner 19:19
you were healthy enough not to live in that forever, yeah, yeah,

Jenny 19:22
okay, just got to move on. It all worked out. That's awesome. I mean,

Scott Benner 19:27
jeez.

Jenny 19:28
So he relapsed again. It

Scott Benner 19:31
all worked out right after another relapse. This is why

Jenny 19:34
I say it worked out, because that first year after transplant was horrendous. He was having a lot of GI issues, basically cramping and mucous. He stools. He'd wake me up at night, just not feeling good, losing weight, you know, I'm basically tube feeding in he has no appetite, and then he breaks out in this rash over his whole body, right? That's he's itchy to the point where he's like scratching in the middle of night, scratching his dressing off, that kind of stuff. Stuff, I'd have to change his dressing in the middle of the night, like it was horrible. So when he relapsed, it was like, All right, we have to do another transplant for sure. Yes, we're doing radiation. His doctor decided, because he had lung changes with the first one, well, we're not going to radiate his lungs. We're not going to do the total body. We're just going to do cranial radiation. So that kind of made me feel good, because we'll hit the rest of the body, however, looking at the brain with just the cranial radiation, yeah, and hope we get it all right, good, but not have the total total body radiation also has a lot more side effects later on or late effects, right? So we kind of avoided that, but we were able to start him on a little bit of steroids to calm this other inflammation and get his rash under control. Because before he went into a second his second transplant was when he was basically a week after his fourth birthday, so a year later, less than a year later,

Scott Benner 20:53
hey, do your other kids know you're alive during all this? Like, how do you oh,

Jenny 20:57
gosh, you know what? We're lucky. My in laws live just around the corner here, and so they just were in charge of the other day. Basically, Mima has been tag team, basically, right? But when it came to school, they would pick them up, they would make dinners all the time, or we would tag team. Do

Scott Benner 21:16
you feel like you missed something?

Jenny 21:18
Oh, for sure. I mean, I missed a lot with I was volunteering. My oldest was in kindergarten when he was diagnosed, so I was doing a lot of volunteering in his class. He's in Spanish immersion, so I didn't it. Wasn't able to help him with any of that. I wasn't able to help him with Spanish, and I didn't have the bandwidth, you know, he came home. It was spend time with him. But all right, hurry up, get to bed, because I need downtime.

Scott Benner 21:43
Can I ask what your your youngest? What was his quality of life like for those two years? Is he just a patient, or is he living as well? No,

Jenny 21:51
I think he was living. No, I'm not just a patient. There's days in the hospital, yeah, he's there was some days that were tough, but, you know, in the hospital on the days where he's feeling fine and we're there just because he had a fever, he's got to get antibiotics like, you know, the siblings could come visit. The hospital has cars. They could drive around. This is all pre COVID. Thank god. I can't imagine the ones that had to deal with it after COVID. When you come home, you know, he is a brother and sister to play with, you know, right? So he was living we made it fun everything, you know, a lot of times after she had a tough procedure, it's like, go to the store and buy something. You know, I always try to make, make things positive for him. If she had to go get poked for something, or this or that, well, let's go to the store and get a treat. So it was something he looked forward, you know, he forgot about what he had to go through and was excited about what he got a lot of stuff. Or

Scott Benner 22:44
we were just talking the other night, I'm sorry, I'll cut you off for a second. And we were just talking the other night for a couple of years, we had this obnoxious blow up ghost in our front yard at Halloween. And when I say obnoxious, it was, it was like 30 feet tall. It was, like, taller than the house, you know? And the other night, Arden goes, Why? Like, because, listen, I don't I'm not throwing shit on anybody, but like, inflatable light up things in our front yard is not really our vibe, yeah. So, so now, as an adult, like, just recently, Arden said she's like, I loved it when I was growing up. And I was like, okay, she was, but why did we have it? She's like, it's not a thing you and mom would buy. And I said, you don't remember? And she said, No, after one of your endo appointments, you get this really great a 1c and you were super happy. And I said, Oh, we should celebrate. What do you want? You can have anything you want. And she went out and bought this giant inflatable ghost for the front yard. But she's, she didn't remember that. That's what it was from. Is really interesting. But, yeah, listen, I'm with you. I would have been like, hey, bad day, whatever.

Jenny 23:44
Here's a toy, exactly. I mean, he, like, he left to buy those little cars that you see it like, you know, CVS or whatever. Just right? $10 car made him happy, you know, yeah, whatever is going to make him happy. I mean, I'm all for it, because he's the one going through the tough stuff, you know.

Scott Benner 24:03
Now looking back, did you does he have much recollection of all that? Um,

Jenny 24:07
yeah. I mean, he remembers, like, so we had two, you know, two long inpatient stays at UCSF, because he was had the transplants, basically, and he was just stuck in the room you can't leave at all. So he remembers the days when his immune system was strong enough that his siblings could come and they would play at UCSF. They have a really, really nice gift shop. He always called it the grocery stop. So we always went to the grocery stop. And like he remembers that, yeah, he's he does, what

Scott Benner 24:36
do you think as a family? Are you closer because of this, or did it cause problems? Or how do you think?

Jenny 24:42
No, I think, I think we are, I think because of it. You know, any time that, any chance that we could we My husband was always like, he's the fun planner, right? Whatever we can do once a quarter, we're going somewhere, whether a drive, I live in California, so up or down the coast. Just been stay in a hotel. The kids love that. So I would stay closer. And then, you know, when the pandemic hit, it didn't freak us out one bit. I mean, we were already used to the masking.

Scott Benner 25:09
I mean, cancer gives you a different perspective, right? Like, we didn't.

Jenny 25:14
We were like, everybody's we were traveling. Like, are you sure you would travel right now? We're like, Yeah. I mean, go stay in the hotels. And hotels are like, empty. My kids know, like, don't touch the elevator button. Use your elbow, or don't touch the high end rail. Hold my hand.

Scott Benner 25:29
Listen, I always tell people, like, I think type one diabetes, you know, having a child diagnosed it too. By the way, your your story is the closest I've come to, like, outright crying while I'm recording the podcast, yeah, because hard not to sit and picture your own kids as two year olds, you know, yeah, during while you're talking, it's terrible, yeah, it's not great. But like, you know, Arden was diagnosed at two, and I think now 18 years later, my perspective is that of a person twice my age, if I ever get forced to list the good thing? You know, some people are like, does anything good come from diabetes? I do feel like I've got, like, you know what I mean? Like, when people get upset about things, I look around I'm like, I don't know what everybody's so upset about. Why?

Jenny 26:12
Because you've been through a lot of stress. You're right. You learn, yeah, you learn to just roll with the punches. Oh, Jenny,

Scott Benner 26:20
if the zombies ever come for the hill, I'm just gonna go. I was waiting for this, yeah, yeah, yeah. But cancer is another thing. It's, it's, yeah, listen, I don't judge people's, you know, struggles, one against the other. I'm not scoring it. But, you know, nobody told me Arden had a 40% chance of living when she was diagnosed with type one diabetes, you know, so, and that's not a thing I had to like,

Jenny 26:41
you know, having having the diagnosis of diabetes really makes, you know, you're already worried. He's already at higher risk of stroke, heart attack, even just secondary cancers, because of all the treatment he's had. And so now to have diabetes, like, I haven't been able to get his ANC under 6.5 so I'm trying, but it's a struggle working on

Scott Benner 27:04
it. That's pretty good. Jenny, don't worry.

Jenny 27:05
Yeah, well, I know, but when I hear what everybody else could do, I'm, I'm, that's what I want. You know, of

Scott Benner 27:11
course. Well, how's variability for them, though, are the highs and lows pretty even, or are you bouncing up and down? Yeah, no,

Jenny 27:17
yeah. Like low. Two hundreds is the high, but more of 180s but so well, if we're going to jump into diabetes, we did the Omnipod five. So we did MDI for three months, and we did the Omnipod five, and I just wanted a little bit more control, so I kept reading about the movie and having just more control for the basal rates, because we would have feet on the floor, pretty decent. And I hate having to constantly, like, bug him at work to give, I mean, at school to give boluses, yeah? So now we're trying, we're trialing the Moby,

Scott Benner 27:46
and that runs the control IQ algorithm, right? Yes, the control IQ

Jenny 27:50
so I can, like, you know, turn up his basal in the morning so that we don't have as high of a okay, I'm still learning. I'm still learning to work in the system. We're like, about a month into it now, yeah, and dealing with the tubing and all that stuff. But he, he, he just rolls with it. He likes, he's like, Oh, you're, you know, he likes to show people his devices. He's so used to being poked and prodded that, I mean, when we were diagnosed, actually with the with diabetes, and we had to go inpatient. Well, to back up the way we found it is because we were following up with some renal labs from his renal doctor, and his sodium is all low. So she's like, give him some sodium supplements. This we test in a week. And she also ordered a urine analysis, and that's where we saw how he was building glucose so that she ordered a glucometer, and then, like, two days later, we find out he's type one diabetic, so he was never in DKA or anything. His agency at that point was 6.8 Yeah.

Scott Benner 28:47
Is there any argument to be made? Does the leukemia or the treatments for it could that well, that's helped with the diagnosis that you know what I mean push towards a diabetes diagnosis? I

Jenny 28:59
mean, it's not a typical thing that happens with kids that have there's also not like as many long term survivors of two transplants, right? So when I asked his transplant doctor, the only thing she could come up with is like, well, we've taxed the immune system so much. I mean, it could just be that, or is it that we have auto immune in the family? I don't know, we're

Scott Benner 29:21
a little of both, or, who knows, right? So the the

Jenny 29:24
Christmas party at school of december 2022 22 he was wearing his mask to school, while everybody was like, not, right? But then the other Christmas party, they have food, so he took his mask off to eat. And then Christmas day, he had a fever. And I know there was another student in his class who also had a fever, so that's why, I think maybe caught something then. But because he was still technically immunocompromised, we had, I had to take him to the ER to because then they have to do a blood culture, give him antibiotics, and then they did a respiratory panel, so it came back to get influenza A okay? And then two months later. Or March, beginning of March, he got type one. So I'm wondering if that was the trigger. I don't know. Well,

Scott Benner 30:06
I just checked with, I mean, I asked chat, G, P, T, by the way, as I asked that, I thought, if I ever do anything really crazy, you know how the cops come collect your computer when you're like a really, like, a big, a bad guy, I think they're gonna look at my computer and be like, What? What the hell was this guy doing? Yeah, what's in this guy's head? I asked, Can leukemia, childhood leukemia, or treatments force a type one diabetes diagnosis, that it could immune system disruption, steroid use and pancreatic damage are all possibilities. So, yeah, Jesus.

Jenny 30:36
So we also found out he does have Hashimotos, right? Okay, I can't remember if I knew that before the type one or not. I don't. I don't remember. I didn't want to feel like going back. He's got so his lab history is long. No

Scott Benner 30:48
one wants your life, by the way, you're like, I can't remember when Hashimotos came. Yeah,

Jenny 30:53
so, but for the longest time, we've been following up with a CSH. And, you know, hits vacillate between two and 10, and they're like, well, he's not symptomatic, blah, blah, but after listening to your podcast and stuff, I'm like, You know what? This kid's got so much tech against him. I want to lift him up any way I can. Yeah, in April, I'm like, get we want to start thyroid meds. Well, let's and I think, I think at that time, we had some that were under two, and I was like, Well, I don't care he has, she's like, but it's a daily medication. You know what we take daily medications? He's got high blood pressure, like he's on insulin now, like, it's not a big deal for me to give him a tiny pill. Yeah, I'd rather give him what he needs to not. Like, have any variables out there? You got too much variables I got to worry about in life, your

Scott Benner 31:39
son might be the only nine year old who would find being in the mob relaxing, like, I can't believe the doctor's like, Oh, it's a daily medication. Like, Oh, you think that's our problem? Yeah?

Jenny 31:49
And so, you know, recently we've also, because he had cranial radiation, he's smaller for his size, right? And all the steroids use because of treat, that's part of treatment for leukemia. We actually held him back kindergarten, so he's a year behind his age, and he's one of the smaller kids in class. So we just started growth hormones a month ago, September. So you know, we're giving him thyroid growth hormones and now insulin.

Scott Benner 32:14
How long do you think the growth hormone takes to kick in? What did they tell you? Well, we started off

Jenny 32:18
on a low dose. He'll get labs strong next month, and then she'll go up. So, I mean, it should start work, start working, but as she ramps it up, he'll grow more, and this is he'll have it through puberty. Yeah,

Scott Benner 32:31
I was gonna say this is a thing that you're expecting to do over years. Yeah, she

Jenny 32:35
even said that for some kids when they're older, when they stop it, they don't feel good. So some people keep it going their whole life. Oh,

Scott Benner 32:44
you need a little bit of it to keep you feeling regular, almost. Okay, that's interesting. Did

Jenny 32:50
they tell you why? Well, he had cranial radiation, so I think that, like we did, the MRI of his pituitary gland before starting, and that looks fine, but because we did 10 days of cranial radiation of two gray. So like 10 days of sedate we sedate him. He'd go into this thing, tube or whatever, and they give him radiation. We did 10 days of that. So I think that because of that, it causes growth horm deficiency,

Scott Benner 33:16
I see, but once you get to your level, and they said you might need some just to feel normal. Like, do you know why that is

Jenny 33:23
because they're deficient. They're you mean, even adults, when you go to sleep, you make growth

Scott Benner 33:27
hormone, right? Oh, I see, I see, I'm sorry. So he wouldn't be making as much, so he wouldn't, well, yeah, he makes

Jenny 33:32
it. But this is supplementing what he's not making enough of. I understand. Okay,

Scott Benner 33:37
yeah, hey, um, did you cry? Like, do you still cry? Or, how long did you cry? When did you stop crying? Did you worry about yourself when you stopped crying? Really,

Jenny 33:47
it's really crazy, because I feel like, if we didn't have diabetes, wow, our life would be so good. I mean, we, I, we feel like we already went we went through it. We went through the gauntlet, I mean, and for everything he went through, like he Yeah, we've replacing these hormones, like, not counting diabetes, he's got high blood pressure, so it takes too much for that. He's got some learning issues because of cranial radiation and all that. Like, he's just a little bit slower, and so he just needs more help, right? But other than that, he's just the normal nine year old kid, you know, and life is chomping along. I mean, compared to we've had some friends that passed away from leukemia. We have a friend who's still battling a lot of pain issues that they can't figure out that's debilitating, and I feel like he got through so much so easily. Oh, you sound great. Diabetes. I'm grateful. I'm great. I am grateful. I'm grateful that he's alive. I mean, I look at him every day, because, honestly, I had a one of my manager sons at the time when all this was happening. Her her son was exactly a year younger than him, and they had the birthday the same week, and he he relapsed, but he. He never, yeah, he passed. So to see that the same time we're going through our second transplant, he's going through his first kind of thing. And, you know, to see them go through, we went through, and what happened like, I am great. I'm grateful. Because, you know, to think about not having him, what that would mean for our family, would

Scott Benner 35:19
just be, we just change everybody, in a way, change

Jenny 35:22
everybody. So, yeah, we got the diabetes. Honestly, it sucks,

Scott Benner 35:27
but that felt like a smack in

Jenny 35:29
the face. Keeps me. Oh, it is a smack in the face. Yeah. Like, what the heck? I mean, if we didn't have this life would be good, like,

Scott Benner 35:37
it only took us seven years to get through this leukemia thing, and then boom, here this is, yeah, I would have listened. I gotta tell you, I had that feeling when Arden thyroid was diagnosed. Yeah. What next? You're like, well, diabetes wasn't enough. Like, you know what I mean? Like, like, we'll do another one here. And that slap in the face is, it really does, like, there's no one to blame for it. I guess some people might blame God or whatnot, like, I'm not in that camp, so I'm not in the camp, yeah? So I'm just like, Oh, God, you know this is keeps happening. And she's like, I

Jenny 36:08
mean, I don't know. I just feel like, somehow, this is whatever. This is his journey. This is his soul's journey that we got to just roll with it, you know? Yeah,

Scott Benner 36:16
did you mark yourself as a resilient person prior to this, or is this something you taught yourself? Do you know? Yeah?

Jenny 36:22
No, I think, yeah. My mom taught me to be this way. She went through my, you know, a lot having being a single parent. I saw her struggle a lot as a single parent raising us under my brother so, but I watched a lot of Oprah growing up. So,

Scott Benner 36:39
like I just found people who had it worse than me, Scott, it makes it all Yeah?

Jenny 36:42
Well, you know it really does. It really does people, you

Scott Benner 36:46
know, over and over again that's brought up in the podcast, and everyone always feels like they're apologetic when they're saying it out loud. You know what I mean. But finding its perspective, finding some perspective,

Jenny 36:56
yeah, perspective. And you know what, I always try like, I don't like, I'm a half a glass half full kind of person, even though I'm not getting me wrong, there's days diabetes, it's, it's the has the glass is empty, just like rare in the midst of the day to day. But stepping back,

Scott Benner 37:15
you're not saying, I don't know what you're saying exactly like, but is like, I don't again, I'm not, yeah, I don't like measuring things against things like I think that the worst thing that's happened to you qualifies as the worst thing that's happened to you. But, yeah, yeah. Are you saying that diabetes gives leukemia, childhood leukemia a run for its money? I think

Jenny 37:34
it's just because I'm so far removed from all that, right? You know in the past, yeah, this is a 24 hour a day thing that I'm thinking of, yeah, like, I don't have that break any like, I don't even think actually, I guess this. This is a good thing. Is it does keep me from thinking about that, because I don't think about relapse. I mean, I I'm grateful that we caught it early, because had we caught it and he was in DKA, I would have been thinking relapse. I would have been a mess.

Scott Benner 38:03
It's interesting. Are you? Are you saying like I climbed out of one pool of shit and now I'm in a different pool of but it stops me from thinking about the first pool. Yeah, for sure. So it's awesome. It

Jenny 38:15
does. It does. And if he ever does start to get ill and whatnot, I think my brain is going to take diabetes and not, yeah, not, not before I want to step back and give kudos to my son, my oldest son. So the second transplant, like I said, we didn't have a good, unmatched donor out there, so they decided to do a family member, and they picked my older son.

Scott Benner 38:35
Oh, wow. So he did a, he did a bone marrow donation. Yeah,

Jenny 38:39
he did a bone marrow for that. That that meant, like he had to get a central line, had to sedate him for that, and then he was connected to this apheresis machine that kind of spun his blood through it and collected his cells, gave back his red blood cells back to him. So he got to spend two nights in the hospital. And he loved it, because it's like, Oh, I get attention now. You know, he's like a king, yeah, yeah, Grandpa, grandpa bringing him Legos. So, yeah, he so technically now Johnny is his Chimera brother, right? Like he's genetically Johnny has Anthony's blood. So if Johnny commits a murder or something, or something leaves blood footprint, like Anthony could be blamed for it.

Scott Benner 39:24
Do they tease each other about that, like I'm gonna commit a crime and

Jenny 39:27
not yet. I think maybe when they're older, they you know, yeah, yeah, not yet. But I wouldn't be surprised if when he's older, he says

Scott Benner 39:36
that, Jenny, wow, you've a genuinely good way about you for having been through so much. I'm sorry to ask you, did this have positive or negative impacts on your marriage? I think positive,

Jenny 39:47
I mean me. I think the way me and my husband got through this is like we give each other space to deal with it our own ways, without, like, nagging each other, you know, divide and conquer. I think in some sense, he probably. Only, especially with diabetes, would probably say that because we don't have as much time, or I'm so focused on the diabetes, because it really is more my thing, like he does. I've tried to have him listen to podcast. He hasn't yet. He doesn't want diabetes and it being the number one thing, and, and I'm like, it, it just, is it just, you can't ignore it away, that's for sure, yeah, no, exactly, until I feel like the more work, and I'm trying to get him to help and understand it more, or at least understand the algorithms and the pumping so that we together can make better decisions, because it's easier, because his brain, I think, is better than mine for this kind of stuff, but really,

Scott Benner 40:36
I think so he better with numbers, or I think he's

Jenny 40:41
just a good critical thinker. And like I said, I work night shift. I'm I'm a zombie mom a lot of times. Okay, so I just think, you know, having his help would be, I'm trying to get him there. We're working on it.

Scott Benner 40:54
Yeah, well, he's a boy, so it'll probably take him till he's 53 but that's how old I start to feel like an

Jenny 40:59
adult. We're working on it, but, like I say, we've because, you know, he's lost his father. He's definitely a family man, you know, and that's what attracted to me, to him, to see how he is with his parents, and the way his parents are with each other. The kid, my kids, as much as the stuff that we've been through, we we go on vacations a lot. These kids have been to Disneyland almost every year. We just do fun things, because we know that this is the time that we have with them. You know, the older they get, the less time we're going to have with them. And not knowing what Johnny what was going to happen with Johnny. But, you know, making memories is the most important thing, and so I think, in that sense, I think it's brought us closer. And I'm hoping that also my older two See, they see the struggle that I go through every day with Johnny, that, you know what? They got to behave. They got to do good in school. They got to figure out their way, you know, and not be rebellious teenagers and all that stuff, because I don't have tolerance for that.

Scott Benner 41:57
Listen, if any of this happens, I'm driving us all off a bridge, just so, you know, yeah, I know, but, but do you think that they feel ignored?

Jenny 42:07
No, no, no, no, no. Okay, not at all. I mean, there may have been times during the tough treatments and stuff, for sure, I think because my daughter is 18 months older than Johnny, so I'm sure they were, yeah, she was, but I don't, I don't think they feel ignored, because we, you know, we still do. You know, not every we don't sit down at dinner table every day, but at least probably twice a week. And we're always doing fun things as a family. And Jenny,

Scott Benner 42:32
I have to ask you, though, like, you know you're doing fun things as a family, you know, like you're trying to bring your husband along with IB, but do you do something for yourself. Like, do you like, I don't know, shoplift for the thrill. Like, what are you doing? You know? Like, what's your thing?

Jenny 42:48
I don't know. I walk my dog. I walk the dog here and there. Like, I go to work. I don't know. I don't this is my this is my time to be a mom. I mean, well, I like, you know, I'm going, I went saw a salsa concert a couple weeks ago. I'm gonna go see another salsa or, you know, Colombian group with some friends next month. So you do things, yeah? No. I mean, I can we do things like, go get together with friends. I have, you know, friends I get together with co workers to get together with. So I do, I have, like, once a year, a group of girls that will go do a week in a way? Yeah, I'm

Scott Benner 43:22
just trying to figure it out. Because you're not like, you're not striking me as well. What I do, Scott, is massive amounts of cocaine. Like, you know what I mean? Like, like, you're not, you don't seem like you're an escape person. So I'm trying to, like, I'm not really trying to figure it

Jenny 43:36
out for you. I take a lot of naps during the day. I'm a Napper. I'm a lab

Scott Benner 43:41
for people listening who are maybe don't have the same like, I don't know, just whatever it is built into you that lets you go, like, yeah, childhood, leukemia, diabetes, it's fine. Well, like, you know what I mean?

Jenny 43:52
I guess I think, like, we have a, we have a staycation home, you know, I haven't been using it as much with we have a nice pool and all that. Like, I don't know, you just go somewhere and chill out. Just try to chill, try to relax, try to, you know, take things one day at a time.

Scott Benner 44:09
I know you're making it sound incredible.

Jenny 44:12
Well, like I say the Leukemia. I mean, listen that that was tough stuff back then. So I've already been through and back then, yeah, like there were days where I'm crying, I'm holding my child in the Rocky chair. He's feeling sick. He's vomiting on me. I mean, that's the trenches, that's divine and contour, that's grandma grandpa helping my kids see me cry. What are you gonna do? You know, but we're past all that now, and now I'm just so grateful.

Scott Benner 44:38
So time, does heal then,

Jenny 44:41
oh yeah, for sure. I mean, I look back, you know, it's still painful. Sometimes I look back at the pictures for those years to see, you know, he's changed so much. He'd have hair, don't have hair, grow hair. You know, he'd be chubby from steroids, or super skinny back and forth. And. And there's some kind of weird nostalgia with all that I don't know, like I try to just see past and looking I don't know. I'm just grateful,

Scott Benner 45:06
yeah, no, you're actually, you're actually able to see his photos as, like him growing up pictures. Yeah, exactly. That's incredibly healthy. I think we should sample you and figure out, I

Jenny 45:17
mean, yeah, you gotta look at the so silver linings. I think that was one of the things I put in my thing for you. Like, try always look at the silver lining of things. Like, something bad happened. Okay, so this is not where the road we wanted to take, but like, where's the positive in this? You know, right, where can I see something good out of this? Rather than, Oh, this didn't go the way I wanted, I mean, and then, just constantly, my mantra is, like, everything's gonna work out. Everything's gonna work out. Like, I guess that's my coping. It's gonna be okay. Everybody's gonna work out. Do you believe it when you're saying it, yeah, I do, yeah, I do. I mean, yeah, diabetes, diabetes, and all the all the variables, is very testing. You know, like the other day we so we started the Moby, we were using his leg initially with the regular auto, soft XC things, and then I tried it on his belly. Boom, he was sky high. Turns out he had a kinked cannula. Of course, it's like right before bedtime. So then I was able to get some true steel ones from somebody else. I Well, let's put this one in. He didn't really like the needle part. But the good thing about the needle is it doesn't bend right Johnny, you know, let him see the positive. And so the next time we had to change it, he wanted to go back to the other one. So I tried it again, and boom, another bent cannula. So, you know, go through the highs, lead to lows, things and all that.

Scott Benner 46:37
Yeah, you think there'll be a day where you look back on diabetes and and have the same kind of distance that you have now with with leukemia. Uh,

Jenny 46:46
well, you know what I think? Because, I mean, here's another thing, like, we're so lucky. He's, in a sense, heavy, because I listen to a lot of your the night he was diagnosed with diabetes and we were inpatient. We went inpatient for one day to get the teaching. Because they were like, oh, you know your nurse, you could do it outpatient. And was like, no, no, no, I am not a WD.

Scott Benner 47:06
I just kind of watched sleeping babies. So like, hold on, yeah. Like,

Jenny 47:09
admit us to treat us like I don't know anything. I didn't know what a Dexcom was. I didn't know any of this stuff was, and I immediately went to Facebook, because when what got me through cancer was a Facebook group called mom collegey. And I would go there and search, like, how many people had second transplants or whatnot, right? First transplant relapse. I just read through stories and look in the history, and I would just focus on the positive. I'm like, I'm not looking at the negative stuff. I just want to know the positive. Yeah, so that's how I found the Juicebox. And I just started listening right away, I think, just learning through that, but also, like, just knowing, I mean, through the podcast, I learned about all the different pumps and all the different technologies, and he, you know, he came about right after Omnipod five came out. Now there's Moby, and there's just like stuff I feel like constantly coming out. And I don't know if AI one day is going to play a role, but I feel like as he gets older, things will get easier, in a sense, because technology is going to be helpful, so it'll be more manageable, you know, yeah,

Scott Benner 48:15
no, I tend to agree with you. Actually, I've also decided I'm going to call your episode, Three Little Birds. Three Little Birds. What is that? It's the Bob Marley song.

Jenny 48:25
Oh, Three Little Birds. Yep,

Scott Benner 48:28
I was, I sang it to Arden the other night. She was having a tough time. And, you know, with, like with she's really pretty significant needle phobia, and so she had, she had a tough time, and it was over, and we were in the car going to somewhere together, you know, don't worry about a thing. And she, like, looked at me. I was like, because every little thing's gonna be all right. And she's looking at me, like, Oh, great. This is the guy I get to, like, get me through it. I just told her I was, I believe it, though. Like, yeah, I really do. Like, everything, like, until it's over. Everything else you're alive for, so, yeah, you know, a lot of it is, I mean, I mean, don't get me wrong, if you were trapped under a car after an accident, I don't know if everything, a little thing is going to be all right, but yeah, yeah, maybe that's, that's the end for you, right? But, like, Yeah, but up until then, these little things that happen you don't recognize in the moment that a couple of years from now, you might not even think about this anymore. And if you could treat it more like that in the moment, it would be more manageable, I think. And it sounds like that's what you did, yeah, yeah.

Jenny 49:35
Now I'm gonna looking at three pictures in my Three Little Birds hanging on the wall here picture my kids. Now I'm going to call them Three Little Birds. My Three Little Birds. Yeah, I had another name for you. You could also call me an endo mom, oncologist. Do people? No, I didn't know. I was going to know so much about none of people are like, Oh, you could be a, you know, oncology nurse. And I'm like, No way. Now it's like, oh, you can be a, you know, endocrinologist, nurse. Like, no, I just want to be a NICU nurse. Yeah,

Scott Benner 50:08
it's good. Also, I would just like all this to go away, please. Yes,

Jenny 50:11
exactly.

Scott Benner 50:15
There's times where you're like, grateful for the things that you've been able to amass and knowledge. And then there's times where you just wish, like, I wish like, I wish I didn't have to think about any of this. Oh yeah.

Jenny 50:24
I mean, you're, I mean this, I still think about, like, what if none of this ever happened? How would our like be different? You know? Yeah. I mean, it wouldn't be, I don't think it would be that much different. But you know that we may have done more trips International, or, you know what I mean, like different whatever, or who knows, or different sports, or you know, the kids would have, you know,

Scott Benner 50:45
but you don't think about it like in a sad way, though. No,

Jenny 50:49
it's just every once a while, on tough days, things will go by, you know, the thought, but I don't sit there and more mourn or suffer over

Scott Benner 50:57
that. Jenny, you know the person who's had, you've never had depression. Have you no? I've never had depression. You're not an action person either. Are

Jenny 51:04
you no when he No, when he went, when he was diagnosed with leukemia. I did. I did go start to see psychologists and go cry my heart out. But it's also because I needed a doctor notes to be off of work, you know? But

Scott Benner 51:18
well, that actually brings me to a question I've had through this whole thing. Your insurance handled all those treatments? Yeah,

Jenny 51:25
wow. Like you're not allowed to say, am I allowed to say, my insurance? I have great insurance, yeah? Kaiser. Kaiser,

Scott Benner 51:31
well, Kaiser, you're not under a mountain of debt. No,

Jenny 51:34
you know, I think because I'm an employee, and I'm, like, think about it, I'm part time. I work point six employee for Kaiser. I have awesome insurance. I don't pay for anything. My out of pocket for each individual is like 1500 and it's family, 3000 okay? And that's it. And

Scott Benner 51:52
then Kaiser is a health system. Is that, right? Like a hospital health system, yeah?

Jenny 51:55
Like an HMO. And then with all the transplant stuff, like they, you know, we did our own stuff here from Kaiser with our oncology, but then the transplant we go, we go to UCSF for that. Okay, so they, you know, they pay for all that. I know that that's been a blessing. We haven't had that financial stress. I was able to take time off of work. My husband could work from we didn't have that extra burden. Some people go through with cancer. We're financial or lose insurance, or once person has to stop working. Like, we didn't have that, okay, so that was helpful, yeah,

Scott Benner 52:26
but do you think working for a hospital system helped you? Like, do they generally have better insurance? Or is that not always a given?

Jenny 52:33
I don't know. I don't think that's always a given. Okay, okay,

Scott Benner 52:38
all right. I didn't know. Like, that was something that always

Jenny 52:40
happened. Good plan, but I don't know if it's always a given. And, you know, right away we were with the diabetes. They're, they're on, you know, they support technology, like, right away they put a Dexcom on, and it was the first thing they did. We walked in, we were admitted, awesome. So that was, that

Scott Benner 52:59
was good. Did you hear about the podcast because you knew to search Facebook because of your leukemia experience? Or did someone tell you about

Jenny 53:07
because I I looked up? I think that might have been the only one I joined. Maybe I joined another one and I deleted, I don't know, just no because of the moncology that was my support. When I was impatient with him, with all the tough days I would always go to that and read stories. I post things, people respond, you know. So that's what I was looking for, and that's what I found in the Juicebox Podcast. So I don't ever call my Endo. I go straight to the Facebook group and I ask questions there, and then I get an answer in 510, minutes. And it

Scott Benner 53:38
works out for you. Love it. It works out. Tell me if I'm wrong about this. It feels to me like when somebody posts something, you get back enough from enough different people, varying answers that you can kind of cobble it together and then see, basically,

Jenny 53:53
you feel confident in it, because it's not it's it's people with experience that are living it, that are giving you the advice, yeah, you know.

Scott Benner 54:01
And you're able to see something that's maybe cockamamie, and go, Oh, that doesn't I'll push that aside. I'll just take the part, yeah, yeah. You kind

Jenny 54:09
of weed through stuff, sure. Okay, even, you know, people post advice or ask questions and advice. You kind of like, yeah, that doesn't sound right, or, Oh, this sounds right, you know,

Scott Benner 54:17
yeah, no. I mean, listen, it's, I don't listen. I diabetes.

Jenny 54:21
This experience with diabetes would have been, would have been a lot worse, not for you. So thank you so much for what you've done. I'm serious. I would have been a lot harder.

Scott Benner 54:32
I can't I can't let you do that, because you're, I am gonna cry.

Jenny 54:36
You're making me tear up. But no, it I feel like so supported with the community, and it's just at my fingertips, you know. Oh, I'm

Scott Benner 54:44
so happy. So it sounds silly to like, 20 year old me who's listening, yeah, that Facebook group is like, I don't know that I could be prouder of something than that, you know? Oh,

Jenny 54:55
yeah, you should be proud of it. I mean, it's. What I go whenever, when I click on Facebook, that's what I'm looking like. What's new, what's going on. What can I learn? You know, that's awesome. Can I help? Who can I help? How can I help?

Scott Benner 55:07
Yeah, I sent somebody asked me for some examples of what I thought the podcast did for people, and I was able to like just, all I did was just search for a post where people were talking about the podcast, and I like, basically, they're writing reviews in their comments. You don't kind of realize till you see it like that. And as I went through it's, I realized it's adults, it's caregivers, it's young, it's old, it's it's there were comments in there from people who don't have diabetes. Were like, Oh, I found this group. And, you know, my thing lines up enough with diabetes that like it helped me. And I was like, geez, exactly,

Jenny 55:43
you still take you can still learn from it. So didn't expect, no, you've created is amazing, and it's a great legacy for you. Oh,

Scott Benner 55:50
oh, that's lovely. Thank you. Oh, you're very welcome. I'll have Facebook group owner put on my tombstone. There

Jenny 55:55
you go, creator.

Scott Benner 55:58
Thank you. Yeah. So then so the people, like, years from now could walk by and go, Why do you think this was celebrated? And then they can wonder about it all

Jenny 56:06
day. I'm sure there'll be lots of people that come by and put flowers. So

Scott Benner 56:10
that would be lovely. I wish

Jenny 56:13
it's actually one of my posts that I because immediately was, like, told the whole story about, you know, not so much detail about his him having cancer. Girls like, is this a common thing? Who else can I find that had transplants and leukemia, that had diabetes? Now, you know? And you reached out, Hey, if you ever want to be interviewed. And I was, like, interviewed, what? Like, oh, because

Scott Benner 56:34
I figured your story is so unique. Like, it's got to be fairly unique, you know. And like, but, but then there's always someone else who's, you know, like, Oh God, it's too unique. I'm never gonna find anybody with a story. So that's why I would like to, you know, wanted to highlight yours. And I'll tell you even, like, the day I had the girl on who was, like, allergic to insulin, somebody said to me, do you think this is going to be interesting to most people? And I was like, well, first of all, I find everybody's story interesting. But secondly, sure me too, yeah, but somebody else will care. And it wasn't two weeks later that a doctor from like, across the country reached out and said, Hey, I've got a patient here. We've been struggling to help them. I heard your podcast, you know, tell me what they did, because I think that's what's going to help my and by the way, it's helped like, four other people since then. And so

Jenny 57:19
networking community. Really cool, actually. All

Scott Benner 57:23
right. Well, awesome, Jenny, is there anything we haven't talked about that we should have let

Jenny 57:27
me see? I'm kind of had my little notes and stuff, but I don't think so. I think we've covered it all cool.

Scott Benner 57:32
Generally, I'm pretty good at getting through this stuff, yeah, but I worry. I mean, I was

Jenny 57:37
nervous for sure, were you? But, oh, I get nervous about stuff like this, but I was excited too, so and I feel like I've been I've known you for a long time, because I hear your voice all the

Scott Benner 57:48
time. Jenny, we're friends. That's fine. We're friends, yeah, yes, as long as you don't show up at my house and kill me, you and I know each other, and that's fine.

Jenny 57:56
I'm not I'm not gonna go to jail for everything I've been through. No way

Scott Benner 57:59
my son, my son, is always like, one of those people is going to kill you one day. And I'm like, why don't Don't say that. Like, I'm sure that's not going to happen. He goes, Okay, I don't think so. You know, I told him. I'm like, we have respect for you. Okay, you're very nice. Just a great percentage of the people I meet are just so wonderful. Like, really, really, just 99.9% of you guys are just, you're awesome. And even some of you that are weird, like, I even, like, you know, yeah,

Jenny 58:27
I get it. I love listening to all the different stories, all of it.

Scott Benner 58:30
I do too. Actually, I I found myself reminiscing today, because this is the, this is like, I'm finishing up recording the 10th season of the podcast right now. And I looked at my schedule into 2025, and it's already full, like, into, like, the first four months, yeah, for recording. And I thought, I'm gonna make this podcast forever, if I can.

Jenny 58:51
You could, because there's always more people, there's more stories, there's more that, you know, even the technology, the pumps, there's just so many things that are constantly going to be evolving. You totally could. And the story, stories, and you can, actually, you can have people come back right and tell stories. And that's

Scott Benner 59:07
the interesting thing, because people come back on and I won't remember them, so it'll be perfect, because I'm my memory is so terrible, like, I feel like I'm the same now, the whole thing just is like a it's like a stew almost. You know what I mean, like, at some point I'm just like, This is good. I don't even know what's in it, yeah, but, but I know. But I know, if it was missing something, it wouldn't be as good, you know? So anyway, all right, well, I'm down. I'm calling this Three Little Birds. All right,

Jenny 59:34
Three Little Birds. Thank you. You just renamed my kids. Now they're my Three Little Birds. Well,

Scott Benner 59:38
great. If they don't like that, they're gonna blame me, so it's okay.

Jenny 59:41
Well, maybe they'll come kill you, right? My mom called me a bird because of you. Can

Scott Benner 59:46
you imagine if that's the last thing I hear? Actually,

Jenny 59:50
no, maybe, maybe one, one year I'll dress him up as birds for Halloween. Oh, my

Scott Benner 59:54
God. I'm just imagining myself running down an alley with like a 25 year old going, hey, thanks. A lot, buddy,

Jenny 1:00:00
yeah.

Scott Benner 1:00:03
Thank you so much. No, Jen, it's my pleasure. You were terrific. Thank you. Hold on one second. Okay,

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 this episode of The Juicebox Podcast is sponsored by cozy Earth. Cozy earth.com use the offer code juice box at checkout to save 40% off of the clothing, towels, sheets, off of everything they have at cozy earth.com if you're living with type one diabetes, the after dark collection from the Juicebox Podcast is the only place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma, addiction and so much more. Go to Juicebox podcast.com up in the menu and click on after dark there, you'll see a full list of all of the after dark episodes. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. 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 you.

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