#1453 Big Baby on Board

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

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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. 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

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

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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.

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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Christian, 26, misdiagnosed as type 2, is a driven Mormon engineer managing T1D successfully while worrying about less disciplined diabetic siblings.

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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. You are listening to the Juicebox Podcast.

Christian 0:14
My name is Christian. I am 26 years old. Live in Utah, and I have type one diabetes.

Scott Benner 0:22
Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. 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. 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/juice box 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. It should not take you more than about 10 minutes.

This episode of The Juicebox Podcast is sponsored by the Omnipod five learn more and get started today at omnipod.com/juice. Box. Check it out. Dexcom sponsored this episode of The Juicebox Podcast. Learn more about the Dexcom. G7 at my link, dexcom.com/juice box. I have a limited time special offer from ag one for you. Ag one is offering you a Lulu Lemon exclusive everywhere belt bag and an ag one welcome kit with your first subscription, while supplies last, with your Lulu Lemon membership. So make sure to check out drink. AG, one.com/juice box to get this Lulu Lemon offer that's drink. AG, one.com/juice,

Christian 2:15
box. My name is Christian. I am 26 years old. Live in Utah, and I have type one diabetes. I mean, I live in Utah, I don't know that I'm part of anyone's gang, but,

Scott Benner 2:33
oh, really, oh yes. I

Christian 2:50
yeah, I don't really know many people here in Utah that have type one. Actually, there certainly are many Mormons of us out here. Yeah,

Scott Benner 3:15
I was 25 Yeah, about 18 months ago, almost exactly yeah. So I got

Christian 3:27
diagnosed about a week after I defended my master's thesis,

Scott Benner 3:33
and about two weeks before graduation. So you know I would Yeah.

Christian 3:44
I had all the classic symptoms, of course, but I didn't. I associated it all with like, I'm trying to jam and get this thesis done. I have this going on. And I ended up having to withdraw from a class because I just couldn't keep up with everything. And didn't even notice that I was losing a bunch of weight, etc. So yeah, it was certainly a very busy time. Well, I guess to go back a little bit, I was initially diagnosed with type two diabetes almost eight let me think I can do that maybe nine months prior. So I like go into my doctor, you know, a normal routine appointment. They do blood work, they call me. They're like, Hey, your a 1c. Is 6.4 you have type two diabetes, 24

so my response was to say, Okay, thanks, and do nothing. I ignored it. Completely ignored it didn't do anything.

Scott Benner 4:53
They just said, manage with diet and exercise.

Christian 4:59
Because. Historically, yeah. I mean, throughout college, I, you know, I gained some weight, dropped off some but, like, I play a lot of sports. I'm a relatively active person. Yeah,

Scott Benner 5:11
I don't know 510 not super average.

Christian 5:17
I honestly don't, I don't know maybe around 200 Yeah,

Scott Benner 5:31
maybe 180 Yeah, something like that. I

yeah, I don't know,

Christian 5:46
my gut reaction was just to kind of cry about it, feel really ashamed, and then say, Yeah, you know, it'll be fine, whatever. I'm ignoring it, but at the back of my mind not think

Scott Benner 5:58
about it, my grandma, but you know, she's old. No, I was ashamed.

Christian 6:10
I mean, I'm just doing my thing, whatever masters program. I got pretty sick. I think it might have been COVID. I don't know. I didn't take a test. January, start dropping weight like crazy, pee in every hour, etc. You know, I think I ended up losing like 30 pounds. For context, my brother has type one, as does my sister. So I have two siblings with it. I have a

you're testing my they're both young. I'm the oldest of seven, so they're both younger.

Scott Benner 6:52
My brother was

Christian 6:53
diagnosed about 10 years ago, and he's 22 ish, and then my sister was diagnosed while I was in college, so I don't know, maybe five years ago,

Scott Benner 7:08
civil engineering. No, I didn't know that you could get diagnosed as an adult. She was maybe 11.

No, I didn't want him to know.

Christian 7:36
I'm pretty private, yeah, but mainly about things I don't like. I'm selective about it, like I'll tell people about, you know, the time I threw a guy out at home plate, you know, in eighth grade. But like, not diabetes.

No, no, my gut reaction was, no one will ever, no one, besides my wife, is ever gonna know this.

Scott Benner 8:08
Yeah, yeah, yeah.

Christian 8:19
She accepted it and said, That's okay, you know, do what you want, but unbeknownst to me, ended up talking with my mom about it

Scott Benner 8:27
down the road, yeah,

Christian 8:43
yeah, my vision kind of starts going. My wife is really trying to convince me that whole last semester to, like, go to the doctor, just go see what's going on. And eventually I relent, because I had this weird smell stuff going on. I don't really remember, go to the doctor, and they're like, All right, let's do blood work, see what's going on. This is in February. He's like, so what have you been doing the last six months? I'm like, What do you mean? Like, have you changed your habits at all? I'm like, no, like, I eat too much chocolate. Maybe. He's like, Well, your ANC is 13.7 and I was like, Oh, is that bad? And he's like, Yeah, I don't know, so I'm going to refer you to endocrinology making.

I got the vibe that it was a little like, yeah, serious, but endocrinology didn't have an appointment for two months. So, you know,

nope. So just going back and, you know, trying to get my masters done, and eventually, my wife convinces me to go to another doctor in. April and show up, and he's like, so your fasting blood sugar this morning was 600 I think, and your ANC is 14.7

Scott Benner 10:12
you should go to the ER,

Christian 10:16
I don't know I once I was on insulin. I didn't realize how terrible I was feeling until I like felt better,

Scott Benner 10:24
if that makes sense, yeah, exactly. Yeah. I have one. She turns one on Sunday. Thank you. No, you're good. You can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juicebox, the Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes. The Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends, and the app will also provide you with a projected a 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juicebox when you use my link, you're supporting the podcast dexcom.com/juice, box. Head over there. Now, spring is on the way, the clocks are changing, and you are in need of a fresh start drink. AG, one.com/juice box. AG, one offers me incredible energy in the form of a foundational nutrition supplement that I think you would enjoy as well, and I have a special offer for you. Ag one is offering a Lulu Lemon exclusive everywhere belt bag and an ag one welcome kit with your first subscription. This is while supplies last, and with your Lulu Lemon membership. So make sure to check out drink. Ag one.com/juice, box to get this Lulu Lemon offer that's drink, AG, one.com/juice box. My daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then, that's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once, omnipod.com/juicebox, get a pump that you'll be happy with forever.

Christian 13:34
Yeah. So I go to the hospital, and I felt stupid being in there, because they were like, I'm like, Yeah, I need to be here, but I feel totally fine. Ended up being in DK. I was there for a few days, and hospital was not very eventful, except for the fact that the doctors

weren't very competent.

I mean, the guy who admitted me, I was like, So what's going on? He's like, Yeah, you have type one diabetes. And I was like, Oh, okay. And then the attending, before I left, gave me paperwork that said type two diabetes. And I was like, Hey, why does it say type two? And she was like, it doesn't matter which type. Just don't worry about it. I'm like, Huh?

Scott Benner 14:12
She's like, just take six units with all your meals and it'll be fine. Yeah, yeah. Right now my blood sugar be like 500 all day. Yeah, no.

Christian 14:36
Well, I called my mom when I was in the hospital, and that's when she was like, Yeah, Bri has been

Scott Benner 14:43
talking to me,

Christian 14:46
and she's like, why would the doctor tell you that you have type two when you have two siblings and a cousin with type one diabetes?

Scott Benner 14:55
So she was pretty ticked off. Got

Christian 14:57
a Dexcom in the hospital, which was nice. Our. Daughter is pathogenetic Lottery, because my wife has an uncle and two cousins with type one, and I have a cousin and two siblings and me with type I have Hashimotos, as do both my siblings and my dad. My mom has rheumatoid arthritis. My dad had ecromegaly, but now that I think about it, that might have what caused his, uh, his little thyroxine dependence, I'm not sure.

Scott Benner 15:26
No, not that I know of

Christian 15:30
Crohn's is all over my mom's side of the family.

Scott Benner 15:42
Yeah, yeah,

Christian 15:44
yeah, yeah. I didn't think it was doing much, because I started taking at the same time I started taking insulin, you know. So I was like, Yeah, I feel better, but do I really need this pill? So I stopped taking it for a while, and then I was like, Yeah, okay. I

Scott Benner 16:06
her, yeah, she's too young.

Christian 16:13
I'm not sure. Partly wants to, but part of me says, like, there's nothing you can really do about it.

Scott Benner 16:19
I don't know. We'll decide later. I think,

yeah, yeah, and

Christian 16:46
we had just found out my wife was pregnant, so it was all it was all sorts of fun.

Scott Benner 16:55
Yeah, I

Christian 17:10
I think whether or not it's a good thing, I felt relieved to be diagnosed with type one, because I didn't feel embarrassed about it. I didn't feel the need to hide it, so it was almost A relief to like, be like, Oh, okay, yeah. I

Scott Benner 17:44
Yeah, yeah, for sure.

Christian 17:45
I have no problem if anyone wants to talk about diabetes, but like, I would have never done that. You know, two years ago.

Scott Benner 17:58
I think it's just the whole like,

Christian 18:00
I didn't cause it. I don't need to feel feel bad about it. And it's also kind of unique. You know, not many people have type one, so there's a lot of questions and a lot of interest, rather than judgment.

Yeah, exactly. I can tell them about my insulin pump instead of like, Oh yeah, you know, did

Scott Benner 18:27
this to myself type of thing for sure. Yeah, I

Yeah.

Christian 18:56
So I started off with, you know, basal R, and I don't remember, Novolog or humilog, and I think I honeymoon pretty decently, because after the first couple weeks, it was really easy to manage.

Yeah, I asked if it was Lada, and they said, No. They think it was just a slower onset that

Scott Benner 19:21
kind of took off.

Christian 19:33
Well. My first thought was, I want to get a pump as soon as possible, not because of any management reasons, but because I really, really, really hate needles. My brother has been doing MDI for 10 years. He's never used a pump. He won't even use a CGM. My mom and I have been trying to convince him for a year, and he I even sent him some. I was like, here for free. On me. Try these. He wouldn't. I.

We're very, we're a very, very stubborn family.

Scott Benner 20:21
I don't,

Christian 20:23
I do know his habits, and I can draw conclusions from there. So I don't, I imagine he does okay, because he does care. But, like, I know if he goes low in the middle of the night, it's a eat the whole cereal box, or if he's gonna have a cupcake on the weekend, it's, you know, eight cupcakes. And he obviously doesn't know what's happening with that, because he's not testing every two hours or anything.

I think so, although he's told me he goes sometimes a few days without testing. I

Scott Benner 21:00
Yeah,

Christian 21:09
no, I know he injects his you know, no vlog, but he said he just hates the feeling of having something on his skin. And I'm like, Dude, the g7 is so small you won't even notice it. And he's like, Yeah, I will.

Scott Benner 21:26
Maybe, I don't know.

Mm, yeah,

Christian 22:01
I wish he would, just because I don't want him to have any bad outcomes. You know, I mean, so far, he's doing fine. He has no complications or anything. But he's 22 and I want the best for him when he's 62 I hope so he's dating a girl. I'm hoping that if they get married, she can be the one to, you know, be like, Hey, come on,

Scott Benner 22:26
because he's certainly not going to Listen to

me. Yeah,

Christian 23:02
the thing is, she was in like, second grade when I moved out of the house, so most of her growing up, I haven't lived there, and they live, you know, a 23, hour drive away. You know, I know her, but I don't know her experiences growing up as much. Yeah, she uses the T slim, but their insurance doesn't cover Dexcom, so she has a libre, right? I

Scott Benner 23:44
I hope so. I I know my sister

Christian 23:48
has a better a 1c than my brother, but not for caring. She doesn't care one bit. Yeah, I think she has about a mid sixes, A, 1c, and it's because she's 300 and then 50, and then 300 and then 50.

I think my mom does the best she can, but she's, you know, 16 and off doing stuff, and there's only so much she can do about it. I

Scott Benner 24:25
Yeah, yeah,

Christian 24:38
yeah, yeah, I mean, I'm, I mean, I'm an engineer. I'm very, I don't want to say type A, because I'm not, but I'm, I plan everything. I'm very organized, and, like, learning diabetes was very easy for me. Like, it just made sense. Like, the numbers, like, I've done math a lot harder than that. I didn't really get a. Lot of help. My first two endos were both useless, so I learned most of it from the podcast. And then, well, I thought I did, until my honeymoon ended, and then I was like, whoa. This is a lot harder than I thought it was going to be. Yeah, my insulin needs about doubled in about two weeks. I mean, maybe a week, because it was interesting. Over those first six months, like I would have a few days where my insulin needs would go up a good, a good bit, and then maybe a few days where they would come down quite a bit. I was low all the time, and it was kind of unpredictable.

Scott Benner 25:41
Yeah,

Christian 25:47
I mainly started with just kind of random episodes, and then I listened to the Omnipod five series, And then then the Pro Tip series. I

Scott Benner 26:10
Yeah, yeah,

Christian 26:25
yeah, so I guess I started with Omnipod, but I had the g7 so I wasn't in automated mode, and I had an ANC around seven. That way, this was, I would say, the three months post honeymoon before that, it was a lot better than that. And then changed jobs, new insurance, put an afford Omnipod, switched to the T slim. Sorry, tandem. I'm on the Moby. My last ANC was a 5.9 I think the next one will be lower, because I've had a lot more stability the last few months. This new endo that I went to was, like, the appointment before that, my endocrinologist was like, a seven is great, yeah, you're doing fine. I was like, No, I'm spiking to, like, 220 after every meal, 250 60, like, and he's like, No, you're fine. And I was like, Okay, I don't want to go that high. And I was like, What about like my basal? I feel like my basal might be too low. And he was like, No, it's fine. If you go any higher, you're gonna go low. I was like, Okay. And then this endo was like, Yeah, I think you could bump the basal by like 20%

Scott Benner 27:34
and I did that, and it made a big difference. I

Yeah, yeah,

yeah.

I did,

Christian 28:12
but I was too cautious about it. I would bump it up like point 05 at a time, and then leave that for a month or two,

Scott Benner 28:24
and I didn't want to

Unknown Speaker 28:28
do anything stupid.

Christian 28:36
Well, my endo a couple months ago, she was like, Yeah, you should bump this by like, point three. Like, that'll be fine. And I was like, really? She's like, Yeah, and she was right.

Scott Benner 28:52
I don't think it

Christian 28:53
was anything from there. I think it was just from when I was honeymooning and I was having those days, like I had a few days where I couldn't get my blood sugar above 80, where it was like I was just eating as much as I could, and just in the 60s, and I didn't want to experience that again. Kind of nervous about it.

Yeah, I mean, I feel like I should tell my sister, like, hey, just do a few things and you won't have to go to 300 and go to 50 and feel like crap. And she's like, Yeah, but it's okay, I don't care. Like, okay,

Scott Benner 29:34
yeah.

Yeah, I think for me, I don't know if

Christian 29:46
this is going to make sense. I, you know, I have a master's degree in engineering, and when people find out, like, Oh, you got to be so smart, and I'm like, No, I'm not. I'm not going to sit here and say that I'm an idiot, but I'm not that much smarter than the average person. I think that it's just I was willing to take the classes that sucked, and willing to put in the hours to study. And with diabetes, I feel like it's not the same, but it's similar. Where it's like, if you put in some effort, you'll get a lot of return. And I see my siblings putting in very little effort, it's like, just put in 20% effort and you'll get 80% of the results. I think that going through school, and, I mean, I played sports all growing up, and so that requires a lot of effort, in a sense, I think seeing the positive outcomes of not even necessarily, like working super hard. I'm not telling you to go spend 80 hours a week doing this or that, just I really believe in the 8020 rule that if you put in 20% of the effort, you'll get 80% of the results. And it hurts to See to not Care. I'm

Scott Benner 32:32
Yeah, I

Oh, yeah, we that's a lot of work.

Christian 34:18
Yeah, I in the beginning, I got in bad habits, so I don't know that it was necessarily a lack of understanding of the basics. But for example, a month into diagnosis, I could eat a brownie and barely see a rise, and

Scott Benner 34:52
then I couldn't

Christian 34:57
well no more, as in, when. I couldn't do that. I still had the habit of, like, just kind of snacking on certain foods that, like, I would end up getting that spike from.

Scott Benner 35:19
Yeah,

Christian 35:21
and I had some more, like, consider the impacts of fat and protein, because, again, it just like, I didn't really need to do many extended boluses early on. And now there are some foods that, like, you know, if I if I have pizza, if I don't do an extended Bolus, I'm gonna go low up front and treat that, and then I'm gonna go and hire later, you know, the whole thing. And it took me time to realize that, like, Oh, I do need to do all of these things. Yeah, yeah. And now, I mean, I was, I was talking with my wife a couple weeks ago, and, and I was like, diabetes for the first, like, a year, which, you know, it's only been six months since then, but the first year, it consumed so much in my brain. I was using so much effort just to try and have decent numbers. And now I don't even think about it more than, like 1520 minutes a day, I

Yeah. And I think the other big thing I was so scared to exercise that first year, because every time I tried, I would tank and I was like, Why do I want to go to the gym if I'm gonna end up sitting on the floor eating fruit snacks for half of it, you know.

And I decided a couple months ago to start training for triathlon for the first time, and I've been able to do it without a lot of low blood sugar, because I finally forced myself to learn my body's habits, or not habits, necessarily, but trends, you know, with with how different exercise at different times a day, and what different foods will do, and just learning that those patterns has made it so that I can work out, and then that, in turn, has made my blood sugar so much more stable.

Yeah, like, for example, in the morning when I'm more insulin resistant, like, I don't really need to worry about anything. I can just kind of work out and I'll be fine. But if I'm working out in the afternoon or evening, I'm gonna drop low if I don't eat something beforehand, that type of thing.

Scott Benner 38:01
Yeah, I guess,

Christian 38:03
not very funny story. I at a Costco chicken bake this one time. It's, you know, it's kind of, it's a lot of insulin, and went to play pickleball, like immediately after I finished eating, and didn't think about the fact that it was like a higher fat thing that I should have extended the Bolus on. And so about 10 minutes in, I get the 52 double arrow down, and then I tested because I almost fell over, and I was like, 27 and I was like, okay, yeah, that's why I don't feel super great. So I try not to have a ton of active insulin on board. But I

Scott Benner 38:57
it is very, very good. I,

Christian 39:14
yeah, not even thinking like I hit it hard, as if I wasn't going to do anything. I don't even know why I did that, because that was stupid, but yes, so from there I was, I've been a lot more careful about thinking about exercise when

Scott Benner 39:26
it comes to bolusing.

Christian 39:42
You You know, triathlon training takes a lot of time, so not a lot.

I like being busy. If I'm not busy, I'm bored, and it's not that I want to be too busy. I like having a few hours in the evening just to spend with with my wife, and I'm happy with that.

Scott Benner 40:19
Yeah,

Christian 40:27
I really like the short tubing. I had the tea slim for a little bit because I don't know if you know that tandem had the choice program at the end of last year. So if you bought the tea slim, then you could get the Moby for only a couple 100 bucks. So that's what I did. I bought the tea slim with the purpose of wanting to get the Moby for cheap. So I had the longer tubing for a while, and coming from omnipot, it was, like, it was, it was pretty annoying,

Scott Benner 40:53
yeah, yeah. And

Christian 40:55
like, I got used to it, and it wasn't that bad. But then coming to the Moby with the five inch tubing and the sleeve. It's not as convenient as Omnipod, I would say, but I don't notice it like Omnipod. So I really like that. And I love control, like you like, it took some time getting used to the algorithm, but there are times now where I can just be like, Yeah, that's a rise, but I the algorithm is going to take care of it. I don't need the balls here. Having An algorithm has made a massive difference.

Scott Benner 41:38
I yeah, I

Christian 42:29
It's funny. I've talked to her, to her about the algorithm, and she was like, Yeah, that's cool, but she was more interested in the Mobi because of the short tubing, not because she doesn't really care about control IQ. But my mom was like, That would be amazing for her. And my sister's like, yeah, she, uh, she plays tennis. She's like, I just take my pump off for tennis anyway, so I have it off like three hours. So like, that would make a difference there. Anyway.

Scott Benner 42:56
Yeah, yeah, she does. I

Christian 43:05
I'm hoping what it is is just her being 16, because I know when I was last couple years of high school, I didn't care what you told me if you were someone I didn't want to hear it from. I wasn't gonna do jack. I didn't I was very stubborn, and I have somewhat grown out of that,

Scott Benner 43:25
somewhat I'm no longer a jerk.

Yeah, I

Yeah, yeah,

yeah, yeah, exactly.

Christian 44:18
I think since my brother is an adult like he still lives at home, not doing a whole lot, like he has a job and stuff, but like he's not moving out or anything right now, I think that they don't. My parents don't want to try and parent their adult child like he's still

Scott Benner 44:33
15.

Christian 44:37
Yeah, yeah. But I think that they say, like, you know you're an adult, you're gonna do what you're gonna do what you're gonna do. We'll try to convince you,

Scott Benner 44:43
but we're not gonna try and force anything. And then my sister, I'm

Christian 44:46
not really sure. I think my mom does the best she can, but she can't force my sister to change her pump when it's out of insulin, or keep it on, or remember to charge it like I know. This summer, she went to a camp and forgot. Charger so her pump was about to die and She didn't have anything to charge it with.

Scott Benner 45:16
Yeah,

Christian 45:40
uh, so my mom was the one that told me about the podcast. She was like, you know, you could listen to this podcast. Like, it's really popular. I don't listen to it. I think they're a little crazy. But like, you know, it could help. And I was like, I'll try it out. You know, I got nothing to lose. I think that there are things that my mom doesn't know nearly as well as I do, but I'm not going to try and educate my mom, and I know that she knows more than enough to have a good a, 1c probably not anything in the fives, but between six and six five, yeah, for sure,

right? I think it's more that like my sister, she she does things that impede my mom's efforts. If that makes sense. I

I think the thing that she mentioned specifically was the high alarm at 120 she was like, I would be hearing alarms all day. Like, I'm not doing that. That's crazy. I

Scott Benner 47:54
My mom is 47 Yeah,

I was 22

Christian 48:16
you know, I went to BYU, and we were, me and my wife were at college when we got married, and I was I felt kind of old for getting married. I was like, dang, all my friends are already married. I gotta catch up.

Scott Benner 48:40
Yeah, yeah. I think, oh, sorry.

Christian 48:51
I think that my sister, like, I know she won't Pre Bolus. I've talked to, like, when I'm at their house for Thanksgiving or whatever, I'll be like, hey, Sophie, we're about to eat. Like, I'm, gonna Pre Bolus, or I don't say I would say I'm gonna Bolus. And she's like, we're not eating yet. Like, but if you give insulin right now, you won't spike as high, and then you might not Go low later. And she's like, Yeah, no.

Scott Benner 49:13
Like, yeah.

Christian 49:47
Yeah, I think the hard part is trying to fit it in when life is really hard crazy, like when I when my daughter was a newborn, I remember I Bolus for dinner. And then forgot that I had Bolus for dinner because of something she did. And then 45 minutes later, I was like, Oh crap,

Scott Benner 50:08
yeah, something like that, yeah.

Christian 50:17
You know, I love her so much, and it's hard,

Scott Benner 50:26
you know?

Christian 50:38
I mean, by the time my mom was my age, she had four kids.

Scott Benner 50:44
Yeah, me too.

Oh yeah, yeah,

Christian 50:54
we're we're thinking three, maybe four tops, seven is like, holy cow. How did you afford that? How did you keep your sanity? How did you ever have sex? I don't want to know that, but you know,

Scott Benner 51:11
how much like tuition? 2500 a semester. Yeah, no 5000 a year. Yeah, yeah, 5000

Christian 51:31
I think it's gone up. I think it's a little over 3000 a semester now. But if you're, if you're more, if you're not, then it's double that.

Yeah, yeah, we graduated with very, very little student debt. Yeah,

Scott Benner 51:53
yeah.

Yeah, yeah,

yeah, yeah,

engineering.

Christian 52:34
I'm currently working as a I'll call it a water resource engineer. It's not a traditional engineering role. I do a lot of non technical work, but I do some technical work as well. So it's technically an engineering job without a lot of

Scott Benner 52:50
engineering work. If that makes sense,

Christian 52:55
I'm very happy. Yeah. I mean, the benefits of the insurance is so much. I got a private offer the same time as this offer and the insurance, it's not even comparable how much better it is. I've saved probably at least $10,000 a year in prescriptions.

Scott Benner 53:21
Yeah,

Christian 53:25
I think whatever is going to happen is going to happen, and it's better to live a life with diabetes than to not live a life at all.

Scott Benner 53:38
A mission. Yeah, I did, yeah. I went to El Salvador,

Christian 53:45
lived in El Salvador, and taught people about our church

Scott Benner 53:48
and about Jesus. Missions are two years. No, she didn't go on one i No, this is before I met her.

Christian 54:06
We were meeting to getting married in about six months.

Scott Benner 54:13
Slow for my family. My parents were two months It's been 26 years now. And yeah,

Christian 54:37
you make references that I don't understand a lot. Yeah, I

Scott Benner 54:48
No,

exactly, yeah, I. Probably not.

Christian 55:03
I feel old because I don't know a lot of the new stuff that current high schoolers are doing, because I don't have anyone in that time of life, in my life right now, and so I'm old enough that I don't know that stuff, but young enough that I don't know the Old stuff. I

Scott Benner 55:49
I don't think so. Yeah, thanks. Applause.

Christian 56:06
I mainly listen for the stories at this point. I like the episodes with like Jenny and that type of stuff. My family doesn't talk about diabetes ever. My siblings don't want to talk about it. My parents don't really want to talk about it. And so even though I have a ton of type one in my life, most of my like sense of community, I guess you could Say, has come from listening to other people's

Scott Benner 56:42
stories. I

right, yeah, I like the mix, yeah, yeah, I think it's good. I

my wife's not pregnant right now. I I'm not sure when I got diagnosed. Yeah.

Christian 57:22
Uh, no, thank you not right now is chaotic enough. I

Scott Benner 57:51
Yeah,

yeah, thanks.

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Today's episode of The Juicebox Podcast is sponsored by the Dexcom g7 and the Dexcom g7 warms up in just 30 minutes. Check it out now at dexcom.com/juice, box. The conversation you just enjoyed was sponsored by Omnipod five. You want to get an Omnipod five? You can? You want to make me happy? Do it with my link. Omnipod.com/juice box, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bowl beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginnings series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698 in your podcast player, or you can go to Juicebox podcast.com and click on bowl beginnings in the menu. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? The episode you just heard was professionally edited by wrong way, recording, wrong way recording.com, you.

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