#575 United in Manchester

Bob has type 1 diabetes and so do his children.

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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
Alright friends, this is episode 575 of the Juicebox Podcast

Bob comes to us today from Manchester, England, he has type one diabetes, and he has children with type one diabetes. He's an absolute delight to speak to. And I think you're gonna really enjoy this. I have nothing else to say about that. So, you know, settle in and soak up, Bob. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan, or becoming bold with insulin. For those of you who are worried right now that I'm going to do a ton of bad British accents and things like that. I don't even do it once. Never. That was it. I'm just I shied away from it. I'm embarrassed. I didn't try. If you're a US resident who has type one diabetes or a US resident who is the caregiver of someone with type one, please consider going to T one D exchange.org. Forward slash juice box and taking the brief survey that will help people with type one diabetes and support the show T one D exchange.org. Forward slash juice box

this show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored by touched by type one, you can learn more about them at touched by type one.org. Also on Facebook, and Instagram.

Bob 1:55
I think I mentioned my email I used to do podcasts for like a board game. I used to play X Wing Little Star Wars spaceships. Yeah, that's that's really popular, you know, they're getting, they're still doing the show. And it's been about 1000 listens a week, something like that. So that's pretty good. And it was it was just such effort. And then when we started the idea was we do a number of short shows every week, sort of 1520 minutes, but there was just too much to talk about, particularly when I was on I can go on and on. So it just got a bit out of hand. And then I'm not playing so much anymore. So I'll let the other guys take out with that. But I kind of miss it. And I do like listening to myself, which is quite advice.

Scott Benner 2:39
Yeah, I think that's a mental illness. I don't actually, I'll listen once in a while to make sure like I'll pop open different players and different apps, there's just see that the show sounding the same over different platforms. And you know, sometimes you'll throw it on on the cars through headsets just to listen to my daughter's like, are you listening to your own podcast? I'm not just checking the audio, and then I'll like laugh and she'll go just laugh at yourself. And I went no, no, I don't think so. So

Bob 3:07
I did use to catch myself sometimes I've listened in a couple of weeks after it came out. I'm like, actually, that's a really good gag. Well done. Well done. They're funny.

Scott Benner 3:16
Yeah, you know, it's possible you do have a problem. And you're like, Oh, that guy's hilarious.

Bob 3:21
Yeah, absolutely. Absolutely.

Scott Benner 3:23
I just think that anyone who does it for a long time, and it and it doesn't generate money. That's a passion because it takes so much time. Like I don't, I mean, honestly, at the rate that I put podcasts out, if it didn't have advertisers, I just couldn't do this. Like I you know, I wouldn't be able to people who do um, I know that a lot of people in the internet like age or are trying to make businesses and places that maybe people don't see businesses all the time. And it's amazing, but it's a ton of effort especially to get to the end and find out that you had a lot of fun, but it didn't it didn't catch on with enough people for it to become like a viable thing that you could keep doing. It's just it's a ton of work. So I think with you

Bob 4:09
the advertisers are pretty cool. I mean, it's very directly because of because of juice box that I got an omni pod. And yeah, absolutely, absolutely understand. And I got a control next as well as a result and all that sort of stuff because you hear about these products and literally I trust you. And because I listened to what you say I do the things you told me to do, and it kind of works it doesn't work stunningly but it works a hell of a lot better than it was doing before. I mean I'm not one of those flatline guys, I still I still bump around quite a bit but then I have a really very diet so that doesn't help. And I'm you know, I'm pretty happy where I am and that sort of 6.1 with a one C which is much better than it was even two or three years ago. But it's the tech the tech it's amazing. Yeah, and you can

Scott Benner 4:56
do me this favor because I liked what you just said I want to leave it in So Introduce yourself very quickly.

Bob 5:02
Okay. Hi, I'm buddy. I live in Manchester in the UK. And I was diagnosed with type one diabetes all the way back in 1985 85.

Scott Benner 5:13
Wow. How old are you? How old? Were you?

Bob 5:18
I was 30. Shortly before my birthday, we do the mouse.

Scott Benner 5:24
Oh, so you and I are almost the exact same age. Yeah, pretty much. Pretty much. Yeah, no kidding. That's interesting. You know, it's funny, because you're just talking about, you know, finding, you know, technology and things are better, but they're not, you know, super flat all the time. But you come from a time where just the expectations were so much different, right? Like, oh, yeah,

Bob 5:49
it was when I was diagnosed, the the regime was humanite and cumin s, mixed together. And they were both good for about 12 hours, although nobody suggested that I should take them 12 hours apart that might have helped. And the the diet was 50 grams of carbs for breakfast, 20 grams in the middle of the morning. 50 grams of carb for lunch, 10 grams in the middle of the afternoon. 50 grams in the evening and 20 grams before bed. And that was every day. And I was I was 13 when I was diagnosed. And we stuck to that for maybe two or three years. And then I was a sort of I was teenage, I got into going out and having fun and misbehaving. And I discovered that I could sort of skip the snacks and not hypo. And that was okay. And then my dose adjustment because I hated doing fingerprints, absolutely hated fingerprints. And in fact, when I was diagnosed, we weren't sent home sent home with a fingerprint kit. We were sent home with urine tests. And the idea was I do one of those every day, but they're basically meaningless. So I had no real idea of what was going on. And then HBA would see checks came in after a while and I got a finger stick set after a bit and the doctor's advice was maybe try and do one every day, just to see where you are. And it was my numbers actually weren't when awful. I think the first time I had an HBase on seat, I was something around probably about an eight. So it wasn't it wasn't completely out of control. At the school I was at there was a lot of exercise exercise was every single day, seven days a week. So that probably helped quite a lot. But the only dietary change was don't eat sugar in anything, any product with with granulated sugar in you just don't do. It doesn't matter whether it's it's chocolate cake with a load of cream, or jelly babies, which are basically pure sugar just don't have any white sugar products at all ever. Unless you're low, at which point you can have a dexterous tablet. And that was that was the regime.

Scott Benner 7:58
Yeah, for years,

Bob 8:00
years and years. I mean, as I say, I didn't stick to the diet so much. And I got to university when I was 1819 90. And then I had about 10 years where I knew that I should change doses. But the doctors weren't particularly useful on suggesting trenches. And at that stage, you know, I was okay, I felt good. The HBA one sees a hand we're by the standards of those times. Okay, so I didn't go every every six months or even every year to see a doctor. I'd skip them. I was moving around quite a lot with University I studied at Oxford and then had two years in London, before coming to Manchester. So what I did was, I would just up my doughnuts every now and again. Until I found I was quite regularly hypo. Which isn't isn't smart, really hindsight.

Scott Benner 8:51
You know, it makes me wonder. So if we, if we took this step of defining type one diabetes, by its management, and not the not the actual impact on your body, or that kind of stuff, and we just defined a disease by its management. You have a completely different diabetes today than you did then. These are these terms. They don't recognize each other at all.

Bob 9:16
It's it's been kind of a step change I moved in. It was only probably about 2010 that I moved to Lantus lodging and Nova rapids and the traditional sort of modern Basal Bolus technique and that that did help me the problem again with that was they would tell me what doses to use, and they just sort of said, well see how you get on. See what see what works. do plenty of finger sticks, and I'd always be very much don't talk about diabetes. I am not disabled. I don't have a disability. I can do anything. And I did. My wife and I we traveled all over the world. I did bungee jumps in New Zealand. I flew from Manchester to Las Vegas. For 48 hour weekends where I didn't sleep, I didn't want to get on the plane. And I had a genuinely sort of crazy time for my young adult life. Until, yeah, 2010, they sent me home with the the new regime, Basal Bolus, said, see how you get along. And there wasn't really even a broad idea. I didn't know whether I was taking 40 units, or Basal or 20. So I just sort of experimented a bit and worked it out. And at that stage, I was still having some pretty catastrophic iPads. They now happily are a thing of the past. But over time, I've been hospitalized a few times. And my wife still talks of the time when, you know, I'm doing this guys would come out and think of myself as a particularly sort of big or strong guy, but it would it will take two guys to hold me down while they've got some glucagon in me. Because I'd be thrashing about so vigorously. Yeah. It's it's, one thing was I never learned to be particularly terrified of hypose in the way that some people seem to be, you know, dead in bed was not a phrase I heard when I was introduced to diabetes. And it wasn't a phrase I heard until the last five or six years, I understood they could be lethal. But that happened quite a bit. And I seem to get over it. And that was that was okay. I mean, it's obviously a very bad idea. But it was sound. Management just wasn't great.

Scott Benner 11:32
No, it's fascinating because you live through a tectonic shift in the way insulin worked. And so many people have that I've spoken to, but I mean, you really were, yeah, I sort of put it the same way every time. But they basically gave you some insulin and then told you eat on a schedule, eat about these many carbs. And if you're a one sees we're in the eights, then that makes, I mean, let's look for a second, I'm gonna pull up this thing real quickly. Never really thought about like this before. But if you're a one sees we're in the eights, then your average blood sugar was like 183, most that was an average or 10.2 for people working outside of the states. So that's your average blood sugar. And you have no real idea if you're achieving an eight a one C, because you're 50 for most of the time, and 400 Most of the time, the variability was never even, I mean, couldn't measure it, so there'd be no way to track it.

Bob 12:30
I mean, I didn't know at that stage that you didn't want your HVAC to be too low, because that would suggest that you're having too many hypose. And I mean, there are still some dinosaur doctors around to who say that kind of stuff. Because in those days, because you couldn't really measure the timing range or the level of fluctuation. The only way you're getting an HBO once the low was by spending a lot of time too low. Yeah. And then you bounced back up high. And so it was actually discouraged to be too low. I think I had something like a equivalent about 7.5. And the doctor was like, Well, you don't want to go a lot lower than that, you know, you'll be high paying a lot if you do. And that. I mean, it was just a different time. And I think what people don't get now is how really difficult it used to be. I mean, I am, I always sort of thought that I probably won't die with diabetes and the stuff that they do with the drugs now, which is pretty incredible. But it's more I'm actually in a really good place with it because of the technology. Compared to how things were really up to about well ready to buy my daughter was was diagnosed herself in about 2015.

Scott Benner 13:45
Is that what so you weren't, you weren't even using like faster acting insolence. Until, until that time, right?

Bob 13:53
I've gotten to know rapid maybe I don't know exactly when it was I think was about 2010 2011. And I remember I go to the summer music festival most years. And that's like a huge three square mile site with 300,000 people on it. It's all complete mayhem. Um, it's it's one of the few music festivals where it's just like a single site where all the camping is enclosed with the the stages, and there's like 90 stages. And I remember being there in probably 2007 And I've gone out for like an early morning walk and left my insulin at the time. And I remember thinking, I've got needles on me, but I don't have my vials of insulin. If somebody stops me at a music festival, for whatever reason and confines I've got needles on me, without any insulin to go now. That's the reason that's the reason I'm going to have a very uncomfortable day. And I remember the the rain started and it was like really quite dangerous. There was lightning coming down and all sorts of stuff. And they closed off parts of the site and I was stuck away from my incident. And there was just an no flexibility in the regime at all. So the potential for that being a problem was was really serious. Whereas with a Bolus Basal? Well, yeah. Okay, you had to you had to Basal. But take your bonus when you get around to having some breakfast. It's fine. And so yeah, that was that was 2007 I think so it was only after that I got into the faster acting stuff. But still, I was very much I can do anything, don't talk to me about diabetes, it's my problem, I'll manage it. I don't want to discuss it with anybody. I had, by that stage, a brilliant diabetes specialist nurse at my local practice on a local GP practice. And he sort of said some things to me like, well, you know, we can change this insulin. So I did, and that seemed to be better. Maybe you should get some education. Maybe he just, you know, find out a little bit more about it. Like, well, no, that's time off work. I don't want to do that. And I'm fine. Look at my experiences there. They're actually okay, because I was still living in a world where, and I was really pretty good.

Scott Benner 16:00
Yeah. Well, it's interesting, isn't it that, that when you really look like now from this distance away, that even at that time, it's not as if I wonder, I wonder, I'm trying to think of how I want to say this. It's not as if there was this rock solid way to manage diabetes in 1985. And doctors were like, here it is, this is the best thing we understand. And it works. It was just the best thing they understood. And I don't even know how well they understood it. Because if they understood it that well, when they handed you Novo rapid later, there would have been a lot of trepidation, they would have said, Hey, this insulin doesn't work anything like the insolence you've used prior. This is going to be a dangerous situation, we really need to figure out what this but they were just like, here it is. Now you figure that out.

Bob 16:48
Yeah, that's exactly how it was. And it was a little bit scary. I remember the first couple of days, I was traveling to Liverpool to do some work. And I was on the train and thought, I do not feel good. I really don't feel good. And I remember cramming sugar in before arriving at the meeting, whatever it was, I was going to it was quite scary making the switch because I thought I was doing okay, I thought I sold diabetes and sold my relationship with diabetes back in 1985. And, you know, it was as good as it was going to get. So just deal with it. And I didn't really pay a lot of attention to it. And I think, with hindsight, and I feel really lucky that something quite serious didn't happen to me. I mean, I go into my kidney checks and my checks and stuff, because I am I remain terrified of protecting my site. Well, the site is super important.

Scott Benner 17:46
No, of course and but besides the long term, things that you're worried about, I find that that, that transfer from those older insulins to the newer insulins, there are an entire generation of people living with type one diabetes that lived through that, who are all lucky to still be standing because of the lack of training, they were given about how to use the new insulin. And I'm saying that I don't think that many doctors knew the chasm that stood between regular and mph and, you know, a faster acting Novolog or Nova rapid or something like that, that these were these were two, basically two different drugs, just because they're both insulin didn't make their function even very similar. I mean, before you were just putting in a bunch, you're basically throwing on a heavy weight of insulin on top of you and then just eating at certain times to prop it up. But now they're giving you insulin that works quickly, and draws your blood sugar down really fast. And your your regular and mph didn't do that. That was that was never how they worked. And it's just it's I mean, it would be like if I gave you I don't know, like a a big pill bottle full of heart medication. And I said you about I don't know how many of these you're supposed to take you go ahead and figure that out yourself.

Bob 19:03
Just yet. Yeah, that's that's that's pretty much exactly what they said. Yeah, it just they didn't know. Well, CGM wasn't remotely a thing at that stage. So you could either do fingerprints every half hour, forget that. Or you could wait until CGM came along and try and understand diabetes. Right?

Scott Benner 19:21
Well, I think I'm sorry. I think it's important for people to hear because there is a difference between the machine that is healthcare and you and your personal story. So they're not the same thing. You know, the world is moving forward, insulins become faster. pumps work differently. You know, we keep moving forward. You have to keep up with that yourself personally, because no one really has the time or the wherewithal to go back to every person who learned befores way and reeducate them, you was difficult enough to educate you the first time. So it is a very personal thing that you need to do is to pay attention to the fact that what the machine is doing, what the world is doing and what you're doing. The goals are not aligned normally.

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Bob 22:13
I mean, in practical terms, it's considerably easier to do that now. Because we have an internet. And you know, it's it's really easy to reach out and speak to people and meet people like me, which was was just impossible. 1015 20 years ago, and I remember going to university. And there was a second year there was a Lasu was a first year student she said oh, I gather that you and I have something in common? And she said oh, well, I've got diabetes, too. I was like, Look, I've never had a conversation with somebody else with diabetes. That's not That's not part of my life. I like to share with anybody else just and I never spoke to that girl again. And looking back on it, I think you absolutely can't. And I would have found thing to do to any other human being. And she was reaching out and trying probably the first person that she'd ever met, who had Taekwondo, she was new university turned around from home, trying to reach out make friends. And I just thrust it away from myself because I'm just not going anywhere near this. I do my injections, I eat my food, and everybody else can forget about it. It's not their problem. And it was it that is part of the problem with with education. And the way that medicines moving forward really quickly. And people aren't receiving education at the same pace, as scientific developments are moving forward. And that's a real shame. I mean, there's so many people who are struggling. And I just think that's just not necessary. You don't need to do that. And, you know, learn a little and get the meds,

Scott Benner 23:42
you have to have the energy and the information and the confidence. And there's just a lot you have to have before you start. And it's it's difficult to collect up all those tools when you don't even know what half of them are supposed to be. And you're already struggling. Like I mean, I'm obviously you you felt badly enough about it. But I'm thinking about that girl, like, you might have been like to her, you might have been a lifeline to her. And you're just in two different places. And she's may, you know, gosh, you think like maybe it was hard for her to say that to you. And then you know, it does make you wonder and not I'm not talking about you personally, I'm talking about everybody in general with everybody feels that way. And there's no one to reach to. And and how do you find these people? Like you said prior to the internet, there's no one out there. You can't can't make those kinds of connections. Well, I think it would be interesting to know from you if you have perspective on it. Because you live for so long the way you did and then you had a long transition through faster acting insulin before you got to see data that helps you understand it. Are you fundable? Are you fundamentally a different human being today than you were then because of insulin?

Bob 24:57
Yeah, I think well for me The big step on the journey was when my daughter was diagnosed when she was 13 years old, about five years ago. And I, we were, we've been away, I think I might, and the kids have been staying with my mom and dad. And we got there. And my mom said, Look, she's drinking an awful lot of water. And I think you probably want to test her blood. And I got the because at that stage, still finger sticks, got the finger sticks that are on, she was 20 something. And we drove it to our local hospital about an hour away from my mum and dad's. And there was quite a lot of tears in the car on the way home. And we knew then that she was was joining me in the tribe. And my wife was quite upset about it. Partly because I'd had such a not a bad attitude. But I'd been so private about it, it just wasn't something I wanted to be discussed. And my wife and I very rarely spoke about diabetes, even after something quite dramatic, dramatic have happened like like the the paramedics turning up. And I would just get really angry about any discussion of it. And we walked into that hospital, she was diagnosed, and I just sat there thinking, Well, I know all this stuff, that they're about to tell her. I know what I'm doing with this Basal Bolus business. And I sat down and listened to the education that she was getting, which was was really pretty good for newly diagnosed. And I after an hour or two, I started listening. And I realized that in the whatever it was 30 years since my diagnosis, actually, the doctors have been doing quite a bit of work. And they'd learned quite a lot of stuff. And it was stuff that I really needed to find out more about. And that really changed me, as a person, it wasn't so much that the incidence of change because I was still walking around in the dark without being properly educated. And her diagnosis really changed how I felt about diabetes, because I knew that it was going to be a part of her, it was going to be whether she liked it or not as integral to as her eye color, or how tall she is wishing that she was taller, or shorter, or fat or fatter or thinner or it's a different color dice is is just wishing, you know she's not going to grow any any taller. And she's not going to be any less tight one. And at that point, I stopped ignoring it. Because with a 13 year old, it was impossible to ignore. And I started to kind of think, well, I can either hate this, or I can get with it, and do well at it not just for her to make sure that her numbers are as good as they can be, but also for me. And I went in for another meet with my fantastic specialist nurse. And she said, Well, you should do this training course. And they have a four day training course they do locally. And it's single day over about four weeks. And I went in and sat down in a room. And it was the first time I had shared my life with diabetes with anybody else. And it was it was a slightly odd experience because obviously only bloke that there were 10 people in the room. And this was for quite a long period. And I was the only guy in the room with predominantly middle aged women, some some a little younger, for four days just talking through diabetes. And I think maybe because it was it was predominantly women, there was more discussion of feelings about diabetes with the education. And it just opened my my minds completely to the fact that I've kind of been hiding from it. For 30 years I haven't really got to grips with with who I was. And I've had quite long periods of pretty bad depression after the millennium, and I and they were you know, reasonably serious. I knew what time the last train from London past the the railway station which was a mile away from my house just in case I ever decided to go and stand in front of it. You know, I'd given real thought to I can't cope with life. And really, I hadn't analyzed in that way. But in fact I couldn't wasn't dealing with my diabetes. I wasn't embracing it. I wasn't getting on board with it. I felt that I wasn't in charge of my own body. stuff would happen that I couldn't predict that might well kill me before too long. And I was really struggling to deal with it. But then when my daughter was diagnosed, she sort of opened the door for me to start liking is probably the one word wrong word but certainly accepting diabetes into my life and it's almost a religious thing for me.

Scott Benner 29:42
Did you do it for yourself? Or do you do it for her or do you not think about it that way?

Bob 29:49
So sorry, seconds but I'm wondering

Scott Benner 29:50
if it felt like you were doing it for yourself or doing it for her. I mean, do you look at her beaten diagnosed and think oh, this is Gonna be her life, she's gonna hide a part of herself, pass out a lot and be depressed. He's like, did you look at her and feel like, like, your experience was gonna end up being hers if you didn't do something

Bob 30:14
to an extent, I think that probably puts it a bit higher than than how I felt because yet, alright, diabetes is a massive pain. But I've had a fantastic life. I mean, I talked about the depression. And and that was just so illogical, you know, I have a job that is reasonably high status, reasonably high income. It's fairly interesting most of the time, and I live in a lovely part of the world. There's a load of pubs within three minutes walk from me, which seems to be down to the ground. My wife is great, we have a great relationship, and I have nothing to be unhappy about. And yet, I still had this depression. And looking to to her when she was diagnosed, it was I didn't really see all the problems that I'd had as massive problems, because you play the hand that you're dealt, you just get on with stuff. And I certainly wasn't wasn't miserable about it, I just distance myself from it and looked at it as an administrative chore rather than a medical trauma. Yeah, even though we were having paramedics round at three o'clock in the morning. That's kind of weird.

Scott Benner 31:18
Yeah, that's why you couldn't talk to the girl at school, because you didn't have any real feelings about it. You were just, it was all nuts and bolts, you were just taking the steps that you were supposed to take at the right time. And then never thinking about it again, I imagine that for most of your life, most of the day, you did not consider diabetes at all.

Bob 31:37
No, no, no go for. I mean, it became almost an automatic process, were you having this many minutes in the evening this morning, try and make sure you remember to have lunch, otherwise, you'll be might go low. became a very sort of automatic process. And, and it was something I found very, very difficult to talk about with anybody. But when when Isabel joined me in the tribe, she, it was very difficult to load that anymore. She is an amazing girl. And it's very difficult to dislike any any part of her. She is a phenomenal young woman. And I'm extraordinarily proud of her like like every parents of their kids. And if she has diabetes, then I'll be extraordinarily proud of everything she does with her diabetes. So it doesn't make her smaller, makes it bigger, it doesn't make a weaker, it makes you stronger.

Scott Benner 32:28
So it tangibly speaking, if you ignore your own diabetes, or you allow yourself to treat it, like it's not a part of you, then you can't treat your daughter the way you want to treat her. You can't you can't see her the way you want to see her and how you have seen and treated her prior to this. So that's the shift right there. Like her diabetes probably saves you from the rest of your life being segmented up like it was.

Bob 33:01
Yeah, very much very much. And, and it was really, I think, psychologically, her being diagnosed made me engage with it, because I enjoy engaging with her. I enjoy being part of her life. And it's big for me. And I couldn't take diabetes away from that. So that prompted me to go and get some, some education and sit in a room with people like me, many of whom had been through the same kind of experiences at school and through their, their 20s with these older insolence. And we all had the same kind of common experience. So not really knowing how to deal with it. And we have this education. And it was it was just mind blowing. So it didn't work. It didn't work. But it was just the ideas were fantastic. And the knowledge was fundamental to everything I'm trying to do now. But it did not get me to where I wanted to be.

Scott Benner 33:56
Well, I asked you about that in a second. But, but it's just fascinating that, like a personal human connection is really what you lacked. And it's just so it just it runs right through every part of life. But I mean, it's one of those things that sounds obvious when you hear it said but yet it troubles and and weighs on so many people just isolation of any kind can be so difficult. I'm just I'm very much reminded of the notes that I get from adults who who want to tell me about how they've had diabetes for a long time and that the podcast has allowed them to hear people with type one. And they've never met anybody with type one prior something like that. It's just very cool that you're that you and your daughter got to be the beginning of your own little community then you branch out so you go to this class, but the class you said as as probably cathartic as it was for you emotionally it wasn't that valuable. management wise.

Bob 34:54
Well, it wasn't because the sea change on management is CGM. When I say CGM in the UK, Libre is huge, because it's NHS funding, whereas getting Dexcom funding on our system is really very difficult. So everyone's using the brain. And that really enabled me to manage my diabetes actively. But just the teaching, I had that that class as to how insulins were working. And as to how you could judge Basal and Bolus and get them into a better spot was was really useful. And the dietary advice about how carbohydrates worked, and how mixing carbohydrates with fats and proteins would alter the impact of those carbs was just really valuable to enable me to understand why my body was doing some of the things I didn't want it to do, I didn't really have a solution at that stage because it's it's bumping and nudging, and it's very difficult to bump a nudge within six, we'll need to be doing an awful lot of them. But the the human side of that class was fantastic. I made really good friends, my friend Jill, who struggled and struggled with her tight one. And she messaged me about two weeks ago, she was celebrating her first week of being 100% in range. And she's come a long way. I mean, she exercises a hell of a lot. She's a big dancer, and she cycles. And that is a good thing. But it does impact on management. And she's also a very low carb person. And and she struggled for years and years to get the numbers of the comptroller just had this last week of 100% in range, which is, is fantastic. I think back to when we met maybe five years ago in that room, and how difficult she was finding stuff and how she just didn't understand how she would go to bed a sudden wake up at 19.

Scott Benner 36:47
I, as you're talking, it occurs to me that I don't feel the full weight of the podcast. I just I don't I don't I don't know that I ever am going to I guess. Because as you're talking I feel I don't know, Gil, right? I don't even know you. And I I'm so elated for her as you're telling me that story. And I just It just occurred to me, I was like, I really don't. I don't know, you know, I guess unless I have diabetes one day, I'm never gonna really understand. But

Bob 37:24
what I mean, I'm not a big fan of, you've not had this experience. So you can't comprehend what it's like, you know, if I go to the North Pole, I'm taking a big coat, I understand it's going to be cold. But I do feel that with with Taiwan, maybe like other I use the word carefully. But invisible disabilities. Design disabled does not mean less abled, it just means you have a long term medical condition that has an impact on your life on a day to day basis. And that is absolutely diabetes. And the legal definition applies to us. So invisible disabilities are really hard to deal with, because they are very lonely. Yeah, you know, we can reach out and just see people living your life.

Scott Benner 38:05
So just because I'm good at talking about how to use insulin, and maybe I'm engaging or something like that, whatever. It's, um, you're making me? Don't worry, I'm not going to do this. But I would like to right now just stop making a diabetes podcast and just pick a different topic. Because I'm realizing that I'm wondering how much more there is about other people and other things in the world? That I wish I understood. Like, I don't know what it was about how you just spoke about Jill, but I, I? I mean, I know. I don't know, you don't mean? Like, I know, I don't have diabetes. I understand it. I think I understand it as well as anybody who doesn't have it could. Yeah, right. Thank you, but I don't, but there's just, there's a human interaction between you and her. That that means something to the both of you that I can't fully make sense of. I just don't have the perspective for and I'm wondering what else I don't have the perspective for in the world. And I'm wondering, and, and these conversations are how you find it. I just want to keep having more conversations with people and trying to figure out more about the stuff I guess that I don't intersect with in the normal part of my life. I just I don't know, it was very nice. What you just said, and it made me feel good. I might be a little unclear right now because I got thrown off a little bit emotionally.

Bob 39:28
Well, I think something that you say about the podcast episodes is that the ones with people talking are amongst the most popular. Yeah. And I think for a lot of people maybe because they are the person that they know, who has diabetes and listening to to all the hundreds of people that you've spoken with and listening to their stories and how they're managing and how things are and just their massive array of life experience. Right? It diabetes isn't stop anybody from doing anything. It really doesn't matter. In order to make the most of your life with diabetes, I do think it's hugely helpful to, to know that other people out there are other people going through it. Other people are dealing with it. I mean, my wife now feels a bit lonely because she's the only person in our house without diabetes.

Scott Benner 40:17
That's a good loneliness, I guess. But, you know, it really is. I don't know, it just it's me You said something a second ago about that people find the conversational episodes more. The I see more people listen to those. And it's fascinating because when people are in the part where they're, they're mining for, for understanding about management stuff, they don't even care about those people don't really care so much about the conversations, which I think is a mistake, because I think a lot of management stuff comes out in conversations. But yeah, but neither here nor there. So what you see is on the Facebook page, those people are are, they're voraciously trying to figure out diabetes. And if I, if I were to go up and say, Hey, I have an episode, I've done this before, just kind of amuse myself, like I tomorrow, I can put up a pro tip episode where I can put up a conversation with a person who is you know, and some description of a person living with type one, overwhelmingly, those people in that space will want the management conversation. Because that's the part they're in right now. Like, it's fascinating that, that you could live for 15 or 20 years with no real idea of management. And now because of measurement tools, you actually have a real chance of figuring it out. And I just hope that after those people figure out that management stuff that they don't do what you did, and just see diabetes as Pull lever, a throw switch B go live life, I think that you can't ignore the emotional part of it, you're not going to ignore it out of existence, it is going to come get you in some way. in some form.

Bob 42:01
Yeah, right. Yeah. I mean, I also, for me, I like about technology. I like tinkering with stuff. And I almost look at myself as a, like an old car in the garage that I'm constantly working on, to make it a little bit better, and it'll never be finished. I'll never drive it out the garage. Just like I'll probably never lose the diabetes, maybe who knows. But it's probably just going to stay in the garage. I'm always gonna be out there, making sure the sparkles are working, or the carburetor or whatever it is. And I like tinkering. I like learning more and getting better at diabetes.

Scott Benner 42:33
I do so you can? Yeah, I don't know. I do too. I love when somebody says something that makes me think like, oh, that's a great idea. Like I look, I understand how impactful fat is in a diet, right? And how it changes carbs and everything. I understand it backwards and forwards. And yet when you said it earlier, it it meant I found myself like inside thinking am I paying close enough attention to that. Like like then and just that little like Spark will make me pay better attention to it moving forward. And that doesn't, it doesn't happen if you and I don't don't talk like this.

Bob 43:14
Talking is the way through. I mean, I'm I love also sharing knowledge. I love learning and I love other people learning. I'm working mentoring someone else at the moment. She's a lady who was 53 at diagnosis. And she's having she started out I started chatting with her maybe three months ago. And she was permanently out of range. When her average blood glucose must have been something in the two hundreds. I mean, it was it was just crazy. And now she's having days where she's almost she's in certainly 70 80% in range. There is still a problem with the Basal she's crashing a lot at night. And that's not good. And we're trying to iron that out. But it's just talking about ideas and working it through. And I mean, as an amateur, I've got no medical qualifications. If I'm talking to somebody about the incident they're taking, I will be super careful. Super, super, super careful. And you know, she's going to get libre too soon, so she'll have an overnight alarm. And that will give me more confidence that nothing terrible will happen if we make some some bigger changes. But she can't get enough time with her with her doctors and nurses, for them to see the changes that that she needs to make.

Scott Benner 44:24
Are you happier now than you were in your?

Bob 44:28
Oh, unbelievably, unbelievably. I mean, it got to a stage just to finish the family story. My son was was diagnosed in fact, the moment I got that call. I was doing a commentary on a board game, sort of high level tournament and I was offered they were halfway through the game. I was chatting about what they were doing on the board, etc. And then they got this call from a wife. Yeah, Matthew is drinking an awful lot of water. I've done fingerprick and I've watched the sounds and I've done another fingerprick then I did a fingerprint with different machine, I'll meet with the hospital. So 12 months ago, he got diagnosed. And he is honeymooning beautifully at the moment. I think still, his numbers are lovely. And we rolled up at the hospital. And by that stage, I got enough education, enough confidence that I felt like I was the one educating the nurses, you know, they would come and ask me questions. And that felt very flattering. But it also felt that I'm, I'm on top of this now I'm in charge of diabetes, because I've put the the hard miles in of reading the books and you know, reading bright spots in my mind reading sugar surfing, find it and getting over the depression as well, which was was huge, because once I felt in control that kind of melted away.

Scott Benner 45:46
diabetes, your diabetes, super spreader?

Bob 45:51
Yes, definitely. There's definitely some sort of connection. And I was diagnosed at 13 years old, I think 11 months, is he was 13 years and 10 months. Matthew was 13 years and nine months. And I think that's just because we were a bit more students in signs with with the kids. When I was first diagnosed

Scott Benner 46:10
about your family before you, anybody else.

Bob 46:13
No, no, I had a grandfather with type two. But that's as close as we get Nobody I know, no thyroid. I have a cousin with really serious arthritis, which apparently has some autoimmune connection. But there's no particular family history of type one before before me. Wow.

Scott Benner 46:32
Look at that. And now, did you get all your kids? Or do you have more kids?

Bob 46:37
Just to just to to just the two kids. I've got the full set? Yeah, I got one of each. I said to the consultant. I saw her one evening after Matt was diagnosed, I brought you another one. And she seemed less excited about that than me, which was I was disappointed by

Scott Benner 46:52
Do you have those sandwich cards in England where you go into a shop and you buy 10? They punch at one time? And?

Bob 47:01
Yeah. I mean, I do know the team, the pediatric team at our local hospital pretty well. They're fairly conventional. I mean, they're they're good doctors. But they're a little bit a little bit conventional. And, you know, libre, the medics who been doing this job, that jobs, they've done those for 20 years or something, and now having to relearn everything, because kind of all the stuff before Dexcom and labor just doesn't matter.

Scott Benner 47:35
Right? Well, it just isn't important. What happens to the what's happening to those doctors is the same thing that happened to those diabetics back then, right, you were brought up in one generation of how to do it. And then there was a switchover. And some people were able to traverse that and some people got left behind. And now the same things happening to doctors, that CGM technology is obviously it obviously elevates your ability to manage diabetes, tenfold better, it's got to be more.

Bob 48:07
It's night and day, Brian, it's just a different way of life. And it means I use libre, with a with a mouse. So it talks to my watch. And I can I can just look at it and say, Okay, I'm 5.2 right now, that's pretty good. The nice healthy lunch I had today is settled nicely with insulin. And the libre was just a complete life changer. And it was recommended to me by a man who's an orthopedic surgeon who said, I've seen these things, they look really good. You should get one of those. And I was still at the stage of No, no, no, don't talk to me about diabetes, you know, I'm managing fine, leave me alone. And it was I think we have that conversation a little before his diagnosis. And, and I got hold of libre, probably maybe six, eight months, I had to pay for it at that stage. But it was just so good. I was like, I will stop the mortgage payments, I will stop the pension payments, whatever it is. Libra is the thing that my family needs to be spending money on for me and the kids.

Scott Benner 49:11
Now I agree. Can you tell me a little bit about that when someone showed you that technology and you didn't want to? Was that real anger? Like how does that fit?

Bob 49:21
Well, it obviously one word, it was more like I'm on top of diabetes. Don't you be telling me? Don't you be telling me how to manage things better? First of all, you're the wrong kind of doctor. And secondly, even if you were adopted, my experiences are okay. You know, I've consistently been told that since 1990. Don't you be introducing things that are going to tell me that I've wasted 20 years of my life doing the wrong sec. That's

Scott Benner 49:48
it, right. But that's it right there. Right. It's the time lost and you can't get it back. And so you don't want to know that the time wasn't used as well as it could have been because that's it crushing feeling but it didn't end up crushing it. Right? It liberated you?

Bob 50:03
Oh, yeah, it was, I mean, once I got into it, it was absolutely liberating. And as I say, it's night and day, night and day to have that information on hand all the time, we're having this chat, I'm telling you 5.2, which is 9192. Ish. And that is something I can tell you about just by looking at my wrist, you know, I'm not getting they're not changing the answer, like all good boys and girls do all the time. And then during the finger stick, and then waiting for the result. And then backing all the stuff back in the little box are the bag and get it and it's a process. Whereas now I'm just constantly in touch with what my bloods doing, you're to the point where I can tell you the carbohydrate content or different pints of beer, by what my Libra does, after I've dropped the beer.

Scott Benner 50:51
You're a really inspirational mixture of before and, and now. But you don't see, as often as I would like, it's just so hard to drag somebody from the 80s into the diabetes of the 2000 and 20s.

Bob 51:07
It's been a hell of a journey. I mean, it really has been, for me a massive, massive journey. Also, for the family as a whole, because I'm now in touch with diabetes. And I got involved working with diabetes UK, I sit on the non exec board for a thing called Daphne, which is the major provider of education for adults with type one in the UK. I'm really active on quite a few Facebook groups, including the juice box one, which I love, because people are nice. And we're understanding and they're open minded, and they exchange ideas. And instead of saying, Well, I didn't have the idea, it must be wrong. They're like, Oh, that's interesting. You know, Susan's on there looking at low carb, and not everyone is with the low carb thing. But she's she's courteous and polite and open minded and helpful about it. She presents it as a very positive choice rather than what if you don't do this, you're all going to die. And it's a lovely space. It's a really lovely space. And I love exchanging ideas, I've learned so much,

Scott Benner 52:08
I should knock on some wood. And at the same time tell you that as an almost 50 year old person, I feel silly saying this a little bit. But I am as genuinely proud of how that Facebook page operates as I am of many, almost anything else. It is really uncommon for people that many people to get into one space and talk so well about any kind of topic it just, especially on social media in general. So yeah, I don't know if how much credit I can take for how it works. But it I'm just thrilled that it works the way it does.

Bob 52:46
I think for me, part of your philosophy is about open mindedness, it's about using the tools available to get to the place that you want to be. And whilst it is a sensible, reasonable goal to get your blood glucose in normal range all the time. And that's that's definitely the ambition behind what you promote and what you eat what you teach. The ideas behind that it's not, well, you have to do it like this, you have to make sure that you eat you have these vitamins or you don't eat those foods. It's all about doing what works for you. Yeah, well, I think people really get on board with that

Scott Benner 53:25
in the history of my life. I have not seen one dogmatic thing work out well. Just haven't. And, and this is too important for people to fight about, you know, like, we don't have five years to figure out who's right. We don't have 10 years to decide which eating method like, you know, people make this mistake of when they the first time they happen upon something they believe it's the first time it's happened in the world. And because I've right and because, you know, I mean, like you know, you know, when you meet a 23 year old, it's like, I don't think these politicians have my best interest at heart. You're like, oh, did you just figure fascinating, you're right on top of things finger on the pulse. Congratulations. But um, but like styles of eating as an example. This is not a new argument just because we've renamed stuff keto, you don't mean like, yeah, people had these arguments in the 80s about and they didn't call it low carb, they just were like, I eat a lot of meat. Like that's, you know, I don't eat bread and I eat a lot of meat. That was how somebody talked about it back then it's not till until social media came up and the idea of branding something could lend lead you to making money with it, that people even bothered with stuff like this. But But my point is, is that I've been around the diabetes space online long enough to watch it ebb and flow. And I realized that we're not growing. We're just rehashing the same conversations with different titles. And I thought, why does any of this matter like Why is everyone busy trying to figure out the best way to eat, or the best technology to use or whatever, just like, Let's Get everybody as close to good as is individually possible for them without, without making them crazy or torturing them about how they how they eat, or, you know, what, it's up to us, etc.

Bob 55:21
But it's the one size fits all concept that this works for me. So therefore it must work for you. If only that were true, only there was one right answer for everyone, everyone trying to manage their blood glucose. And of course there isn't. I mean, at the moment, it seems to a lot of people seem to be chatting about which Basal insulin to use. And there's been a big study in the UK, which is out for consultation at the moment, comparing the impact of different types of Basal insulin. And actually, the result of that is the sort of study or studies thing, the result of that is probably going to conclude after the consultation that some of them worked really well, for some people. And some of them worked really well for other people. I mean, I really love to see, but when by the time I was, I was finishing my MBA before I got some, I love to see that. And that was by far the best for me. But then there's other people who do really, really well with blank, Sklar gene or whatever else it is. And the idea that those are sort of best, you know, this isn't a video game. It's not like a high school where your doctor will let you finally let you have the good insulin. You've got to experiment and try different stuff and just see what works for you. Yeah,

Scott Benner 56:34
no, it's fascinating how somebody can say something. And it doesn't have to be based on anything. And you're like, Well, I heard somebody say it. Now I would tell you, if Arden had to go back to MDI, right now, it would be my inclination to try to Seba, but that's just based on anecdotal stories that I've heard from other people. And if it turned out to not work well, for I would pivot in two seconds, like I don't sit still and let bad things happen, just because somebody said, Here's your insulin,

Bob 57:02
well, then you get all the information from people who are active on the internet, and the people who are active on the internet talking about their diabetes are also the ones are going to talk to their doctors about different insulins, because they're engaged. And then the doctor is gonna go, Well, you know, why don't we try some of this, to see the stuff that we've got now. And, and that may work really well for them so that other people who are succeeding with it are the ones who are talking on the internet about it. Whereas there may be loads of people using nonsense largely and have been doing it for years that's working for them, who aren't on the internet, who aren't really engaged with the conversation, right? And I feel I feel a little for those people because it's a big part of your life. It's 180 decisions a day, going to talk to other people doing this thing. It's not easy. It really isn't easy. Do this day in day out and talk to people.

Scott Benner 57:48
It's still tough, even with the internet for other people to find answers. I will tell you for certain that even though Arden's nurse practitioner was the first one to bring up Dexcom. And I've told the story about how she, she she started telling me about this kid in the practice who wanted to teach himself to eat m&ms. So he literally got a Dexcom just so you could eat m&ms. And, and then she was explaining to me how he got this flat line. And she was super excited because the kid could eat m&ms. And I was sitting there thinking, Well, if he could do it with m&ms, like I could do with everything, probably like what would stop me from doing it with other foods. But still, the leap was still difficult to make until a woman who none of you probably know named Lorraine, who was just very big in like diabetes blogging a really long time ago. I heard her say Dexcom. And then I that's when I took two and two as well. Now the CDE said it. I liked the idea of how she put it. And now I see Lorraine a person who is friendly, and I feel good about. She said she's trying it too. I'm going to ask about it. And then she's the same person who brought up a Pedro and I could listen, I can go back now in my mind and tell you I don't know if Novolog caused Arden's like drastic peaks and crashes or if I just wasn't very good at diabetes back then. And switching to a Piedra maybe partly just coincided with a time when I figured things out. But in that moment, it felt better a Piedra. In my best estimation in Arden works more gradually. There. It's not as like vicious. And so you can I don't know. I like it a lot. I know how to use a pager really well, I was not good at Novolog. Having said that, if you put Arden back on Novolog right now, I don't think I'd have the same experience I had prior because I'm better at it now than I was all those years ago.

Bob 59:43
But we're all we're all we're all biased. And I can tell you that fire school takes somewhere between 10 and 20 minutes to get going on the it will hit Isabelle within 10 and it will hit Matthew almost before he's drawn it up and You know he just puts need near his like his blood sugar and starts to go down. And that to me is is one size does not fit all the fact that that your doctor says and Novo Nordisk say, this is how the insulin should work does not mean that's how it's going to work. It's so you don't trust these guys, but you've got to do it yourself and look and learn.

Scott Benner 1:00:21
Yeah, what because even that there's numbers they give you they tested on however many people they tested on, and then these are an average of, you know, yeah, in 1000 people on average and started working within this time frame. But this time frame, it doesn't mean like you said, it's gonna be the same for you, I love the way he works. It seems to make Arden feel a little bruised at our spots. So we don't, we haven't, we tried it a couple of times. And she's like, she gets sore from it. Like she feels bruised after the pump comes off in that spot. So alright, you know, that sucks. But I did like the way it worked. It was easier for us. And I'll tell you, the next person that comes out with another insulin that is supposed to work more quickly, I'm gonna try that one too. And it just keep going I the worst thing I can imagine, is complacency. In a space that is moving this quickly. And this positively, it just doesn't make any sense to sit still.

Bob 1:01:18
I mean, the terrifying thing is that the doc's are very reluctant to make decisions about treatment until they've seen studies. And that makes sense, because they're scientists, and they're relying on those studies to justify that decision making. But it's happening so fast, the changes happen so quickly, that they can't keep up. Yeah. I mean, I mean, for me, I don't know how excited I'm going to get about it. But the idea of a linear relationship between amount of carbohydrate and amount of insulin is obviously nonsense. Like anything yet, we're all taught it, we're all using it. But I know that if I have my regular breakfast, 22 grams of carb in there, I will take 5.25 units of insulin. But if I doubled that amount of carb if I woke up from really hungry, and I double the insulin, so I'm at 10.5, then I know that I will hypo two hours later, because it isn't a straight line relationship for me.

Scott Benner 1:02:18
So you need all that info that insulin upfront because of the piling on of carbs, but down the road, that leaves too much insulin in your system. Still when the carbs are gone.

Bob 1:02:28
I'm upset. Yeah, exactly. And yet, nobody wants to talk about finding some kind of differential equation and some sort of software to put that in.

Scott Benner 1:02:39
Yeah, you're not gonna find anybody to talk about that? Well, not when there's variability between people to people like, what what you what you're taught, is, it's an amalgam of everything they've learned about everybody that falls as close to the center as possible, that won't cause too many people, too many highs or too many lows. It's just, it's just trying to keep you alive. It's not trying to keep you healthy. And that's where it becomes personal then. And it's difficult for people to, to parse out that information and see it like you have no idea how many people I speak to, who don't see the correlation between different impacts of different foods. Like they'll just say, like some mornings, I don't know, like, it works great. And other mornings, I get really high later. How come? I don't know. And then you talk to them for hours upon hours on Days and texting back and forth. And then you realize, like, I now know how to ask and ask the question, so I don't have to waste the time. But they don't. That one day, they're telling you about a fried egg they had with a half a piece of toast and a cantaloupe. And the next day it's oatmeal. They don't understand why is it so bad. One two, I counted the carbs and I put in the insulin, same both days. It didn't work. And but people's minds don't make that leap. And and I don't not understand why like it's it takes it an investigative person to sift through that and not everybody thinks that way.

Bob 1:04:08
And it's about the compromises you're prepared to make in your life. When you have a thing during after the the first lockdown in UK finished, there was a thing called etail. To help out where our lovely government decided this was quite a nice thing for the restaurants at the time that they would pay the first 1010 pounds about $13 of your meal, or half of the cost of the meal if it was less than 20 pounds. So whichever was the smaller, but they were just trying to kill the restaurants because they were worried that nobody would go out because it was post COVID. And we're finally through the first way, there's definitely not going to be a second one. Look at that, too. But anyway, we went out there for 13 days in August and we ate out every single day. At different restaurants every single day. Were cooked the days when when the wife and the kids went away and they ate breakfast, lunch and dinner. And of course when We go out to new restaurants, new places, places that haven't been open for four months because of lockdown. You're trying new foods, and I love challenging myself to get them right. You know, I don't I don't go into meltdown if I if I hit 200. I do insulin. That's what it's for. And I live trying to get ahead of the meal to work out. Actually, I know there's a load of fatness, but there's a load of rice in it as well. Or maybe pizza. I mean, people talk about pizza, like pizza is one thing. And the difference between a frozen pizza that you might eat at home, and then the really nice Italian restaurant down the road, and the big chain pizza restaurant, those pieces are all different. They all work differently for me. Yeah,

Scott Benner 1:05:43
they might as well. They might as well be three different foods. You calling them all pizza is like calling diabetes in 1985. The same as diabetes in 2020.

Bob 1:05:54
Yeah, absolutely. Absolutely. And I love the tools. And they're great. And I believe in what I call di positivity. And there is no point sitting around feeling sorry for yourself about diabetes, a lot of people find it hard. And hard things are often unwelcome. But anybody who tries to do a poor you, you know, when I talk about about the kids, and they're in the team with me, like Don't you dare pity my children do not dare, they are grown up in a reasonably accurate household in one of the most comfortable countries on the planets, with internet in every room, you know, they are, they may have to worry about the planet in a few years time. But they are basically the luckiest generation of the board. And we're going to do a couple of injections before or before they you know, that's that's do not pity them. And diabetes makes them stronger, tougher, more forward thinking. It teaches them to prepare for things. And teaches them self management, all of that stuff. And I remember when I was at school, I used to have to go and do my injections in the evenings, because I had dinner to have an evening. And there was a teacher that you saw me doing that once. And she gave me this sort of sad smile. And that made me so angry. Yeah, that made me furious.

Scott Benner 1:07:19
Well, struggles good. Might not be it might not be preferable to get it through your health, but it's how you got it. And there's a lot to be made of it. So that's it, you get a you know, you get hardened under fire, right? Isn't that what they say?

Bob 1:07:34
Yeah, maybe? I mean, I think diabetes is science. It's reality. I know that people sometimes don't understand. But the answer to that is improve your understanding. You know, and don't spend time going, Oh, this disease is terrible. And the people who make me furious, and the people who say they don't want to have kids in case they get diabetes. You know, I ask

Scott Benner 1:07:57
that question a lot, just because I'm interested to hear the answers. And they've got such varied answers over the years. I don't know that I've ever I understand that you wouldn't want to hear somebody say it. And I understand when somebody says it to like I like it feels like they're so overwhelmed. They just can't imagine it again. And there's people who put it on themselves. Like, they feel like they gave it to somebody which is of course it's silly and silly and understandable at the same time. Like I understand you feel that way. And of course, that's not how anything works like you. You don't walk around being like, oh my god, I get my kid brown eyes. I wish they were blue. This is my fault. Like nobody feels that you know, like it's the emotion gets twisted up with the logic a little bit.

Bob 1:08:44
And it's about okay, diabetes fault for what it can be. And it teaches you all kinds of things about nutrition is he did an exam 16 GCSE which they all do. She the grades go from one to nine, and nine is supposed to be like one in 1000 kids will get a grade that high. She walked in and scored a nine in the feed nutrition exam, food tech, whatever they call it. She just got a nine because she walked in there with so much knowledge about food before she started. And, you know, that's that's just a bonus from diabetes. And I self pity is I understand how difficult people find I really do follow how hard some people find it. And and I think particularly for parents, you know, their kid has not turned out to be having the childhood that they were hoping for. Right? But don't let that stop. You're sad about that. You know that they're still having a childhood, they're still enjoying out 50 years ago, they wouldn't have be. And in fact, 30 years ago, they would have had really bad management and they'd be hyping all the time. Yeah. And that's not where we are that oh no,

Scott Benner 1:09:53
yeah, we like to say that the you know, back in 1920 You would have died if you were diagnosed with type one diabetes. There was no insulin, but you were diagnosed in 1985. And it wasn't great for you either. It's only become kind of what it is. I'd have to say in the last decade because of glucose sensing because of CGM, like, Yeah, this is the advanced right here, like you're living in the golden age of, of having type one diabetes, if that's the thing. It really, I mean, that's how I see it as well. Hey, can I ask you a question? Because there are a couple of things that you've said that I have to imagine that I understand. And one of them is that they might have trouble with the plumbing. Are you saying the sewer systems in England are getting old? Is that? Was that your inference? Or has your house only new pipes? You know, you said, you, you said that your kids live in the greatest and one of the greatest countries in the world. They don't have a lot to worry about, but they might have to worry about the plumbing. Oh, the planet,

Bob 1:10:56
not the plumbing the planet? Oh, thank

Scott Benner 1:10:58
God. I was like,

Bob 1:10:59
Yeah, I know, the plumbing. I thought this house

Scott Benner 1:11:04
is England filling up with it. And I don't understand what's the plan?

Bob 1:11:10
What's the plan? I mean, it's the thing that I mean, I travel in the states quite a lot. We really enjoy life over there. Generally, I think that the time will come in a few years where I'll be spending a lot more time there. And the the curious thing is that you describe something called a British accent. And I don't know what that is. It's how

Unknown Speaker 1:11:30
you that there isn't

Bob 1:11:34
anything like somebody from Liverpool, or somebody from London, let alone anyone from Scotland or Wales, and they're all places in Britain. And you know, you get really, really interesting accidents like up in in Newcastle. And I think what you guys often mean when you say Brushos, somebody who speaks very much like this as if they've recently been released from Downton Abbey. And that's not how we talk. You know, you do meet those people, but they're few and far between

Scott Benner 1:11:59
there is someone on once who I said privately afterwards, I said that I thought she sounded like Adele and I think she was insulted by that. But I couldn't tell why. So

Bob 1:12:09
well, there is a great quote that no Englishman can open his mouth about another English. Mm hmm. Okay. And, and the way we speak conveys a lot of information to people. Anybody who knows the northwest of England, where I grew up in, in Blackpool, which is like a little seaside town, a bit like sort of Atlantic City. And there is a, there's two types of accent in that part of the world. There's my accent, which is a broad, fairly gentle Northwestern Lancashire accent, but it rises at the end. And that wasn't something that came with Australian soap operas, people from my part of the world have always spoken with their sentences rising a little bit towards the end. And then there's a really broad, like Lancashire accent that goes like this with quite flat bones and all that sort of thing. And, and you can tell what kind of school people went to, as to whether they've got an accent like mine, or whether they've got the broad Lancashire and it's in where I live, there are maybe four or five towns around the north of Manchester no more than five or 10 miles apart. I can I can tell with a fair degree of accuracy which one someone was born in because of the way that the accent changes just from one town to another. Okay. So that of course, you know, you sound like you're from Burnley and you're walking around Blackburn which is the the rival town five miles away. Everybody with a Burnley accent will not be popular in button so that's the and there's also the plus thing as well. Yeah, I

Scott Benner 1:13:36
backpedal very quick. I think I found it delightful, but she she didn't like that too much. I don't think I forget.

Bob 1:13:44
Oh, Adele is a real Eastern BLUs okay. She's She's a proper, I was lucky enough to see Glastonbury and she sang to 120,000 people and it was like every single one of them she was going to go and have a gin and tonic with after the gig. It felt like she had the whole crowd in the palm of the hand.

Scott Benner 1:14:01
I've seen her live as well and it did feel like that a little bit like oh my god there there's that person I wish I knew personally she's standing right there. Yeah, has that feeling

Bob 1:14:11
she just genuinely a lovely human being but she is a real East End girls and from a pretty sort of working class background. And English people get very offended not not that they think the other classes are worse. It's just no no my identity is this class. You must you must put me in that unless the middle class in which face all the time you either pretending your upper class or working class depending on who you with. It's it's very complicated.

Scott Benner 1:14:37
It sounds it sounds it sounds more complicated than than diabetes.

Bob 1:14:42
It's yeah, but less significant.

Scott Benner 1:14:45
In I guess it doesn't make you past that. Unless you try to drink and keep up with people you can't drink with I guess then maybe it could.

Bob 1:14:52
Yeah, I mean, drinking is a really rich thing. It is a popular sport over here. But interestingly, the America seems to be doing divided into people who drink and people who don't drink. And the guys who drink really drink in America. If you were to order a whiskey in a bar in the States, you get like half a pint of stuff. Whereas over here it's it's a generous thimbleful. When you order a whiskey in a bar what then everybody, not everybody playing him instruments but but most people will enjoy a beer or, or whatever it's, it's, I remember going to there was one chain restaurants states were and they didn't serve alcohol. I was genuinely appalled. You have a restaurant without beer, but it makes no sense. But the the drinking culture is very different.

Scott Benner 1:15:41
Okay, well, I really appreciate you doing this and reaching out and wanting to share your story. And I mean, it's fascinating that you have this like, long tail of experience. And then you're also the parent of kids with diabetes to like your, you really have all there's a lot of wealth in what you were saying. So I appreciate you taking the time to record it with me.

Bob 1:16:05
That's really kind that's really kind and it's a privilege to be on. I mean, you are at the forefront of all of this. There are a couple of people who are heroes, for me with diabetes, and I've had a couple of amazing nurses. And I think what Professor Pathak cars doing for diabetes in the UK is phenomenal. He is absolutely they're fighting for us to get everything we need. And the stuff that you've been doing for us is building as well. So I'm very grateful.

Scott Benner 1:16:32
I'd say incredibly kind. I appreciate you saying that. I'm gonna stop now because this is where I get weird and sappy, so we'll just put

a huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kaipa pen at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGL? You see? Ag o n.com. Forward slash juicebox. And I'm not kidding, this is the last chance to get your tickets for dancing for diabetes. Are you in the Orlando area touched by type one.org, click on the program's tab, take on dance take on can click on dancing. Click on let's start over touch by type one.org Click on the Programs tab. I'm so sorry. Click on the Programs tab. Click on my brain. Go to touch by type one.org Click on the Programs tab. Click on dancing for diabetes, and then get your tickets. I'm so sorry. I don't know what happened there. My brain hurts now. Please don't let my ability to not remember what I wanted to say reflect on how you feel about touched by type one touch by type one.org. We're also on Facebook and Instagram, and they're wonderful supporters of the Juicebox Podcast you're gonna have a great time at dancing for diabetes. Hey, if you're a new listener, and you're looking for the Pro Tip series, there at Juicebox Podcast comm you just click the link at the top that says diabetes pro tip. There's a whole list of them there. You'll also see the defining diabetes series there. As a matter of fact, the website is pretty great. I can go to it for a second. tell you more about it. You would think I could do it off the top of my head but after what we just heard about the dancing for diabetes thing better if I pull it up and show it to you. When you first bring it up, there's links all across the top episodes. Pro Tips juicebox Doc's best anchor and boy here we go. juicebox Doc's best endocrinologist. Those are doctor sent in from all over the world by listeners just like you. There's an A one C and blood glucose calculator translates it's great, really just check it out. There's a link to the private Facebook group there. Knowing the signs of type one diabetes merchandisers, everything that's not the point then you scroll down. There's different ways to listen. There's just links for like Pandora, Android, Amazon, Alexa, Apple, podcasts, Spotify, Google, Amazon Music any way you want to listen, you click right there, that a little lower recent episodes of the podcast, you can click on them and I don't say this enough, but like here's one episode 573 You click on it. It's called adaption. diabetes has a short little one. You know blurb gives you some links to listen, you can listen right there on the web if you want. And there's another clicky clicky at the bottom says click for episode transcripts. You can actually read a transcript of every episode on their pages that are available at juicebox podcast.com. We scroll a little farther it's all the diabetes pro tips are listed there. The great sponsors Dexcom Contour Next One Omnipod T one They exchanged evoke I bullpen touched by type one that's there. Then you go down. There's some articles on the blog. If you like to read, do people still read if they do, that's their defining diabetes series, everything from understanding crush it and catch it, which is a phrase we use in the podcast to see peptide, hydration, all the tools that you use every day managing diabetes, described to you by me and Jenny Smith, very briefly, I think entertainingly. And helpfully, there's a lot of fillies and well, why isn't those words go down a little farther. There's diabetes, the diabetes variable series, little variables that you're going to run into while you're managing type one, and how to understand them. Sleep pumps, light placement, bad sites, growth hormone, a whole bunch of stuff there. Then we get down to the after dark series. Oh, so much goodness, they're eating disorders, diabetes, complications, divorce, bipolar disorder.

Geez, heroin addiction, bulimia, using psychedelics with type one, sex, drugs, booze, it's all there. type one diabetes and all the things that nobody else talks about. If you keep scrolling, you're going to come to algorithm pumping, which are episodes all about looping, and other algorithm based pumps. Like the mini med 670, G, and the control IQ. There'll be more coming soon about Omni pod five, and what other and what other and whatever. Oh, boy, and whatever other algorithms come to be. You scroll down more some of the more popular diabetes blog posts there. How I got to be bold. How to Bolus how I Bolus for Chinese takeout. It's a breakdown there's a breakdown there of how I Bolus for a high carb breakfast. It's just it's helpful and then the how we eat series How do people eat intermittent fasting flexitarian keto FODMAP Bernstein, low carb gluten free plant based carnivore vegan it's all their people have come on and talked about the different ways they eat. That's everything that's on the first page of Juicebox Podcast calm. Are you kidding me? You see how much effort they put into that? Once you go look at it. Alright guys, I'm so tired from talking like that. I gotta go.

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#574 Swiper and the Map

Ariana is the mom of a young type 1, she also has her own struggles.

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

Scott Benner 0:00
Hello everyone, and welcome to episode 574 of the Juicebox Podcast

Ariana is on the show today she is the mother of a young girl who has type one diabetes. And Arianna has some struggles of her own. Today we're going to talk about all of that on the Juicebox Podcast. While we're having that discussion, I'd like it if you could remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box and fill out the brief survey that you will find there. That's it. You'll help people with type one diabetes and you'll support the show T one D exchange.org. Forward slash juice box. Looking for community around type one diabetes, look no farther than the Juicebox Podcast group on Facebook Juicebox Podcast type one diabetes over 17,000 people talking everyday about type one

this show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored. I just pause so long that I forgot what I was gonna say. Let me do it again. This episode of the podcast is also sponsored by the Contour Next One blood glucose meter. Head over to contour next one.com Ford slash juicebox. To learn more about the most accurate and easy to use blood glucose meter that I've ever held. There. See I got it no problem. There are links in the ship. Boy, I'm a mess this morning here. There are links in the show notes of your podcast player and links at Juicebox Podcast comm to these and all of the sponsors. Please click the links. Alright, here comes Ariana

Arianna 2:28
talk and you talking at the same time?

Scott Benner 2:31
Hold on, you're being recorded now. So you know okay. It's weird. Okay. It's Oh, it's weird. Just not hearing just my voice.

Arianna 2:38
Yeah, I've seen pictures of you and heard your voice but not together at

Scott Benner 2:43
the same time. I have to admit, I don't normally look at people while I'm doing this, but I enjoy watching your smile. So Oh, yeah. Like you seem happy at the moment. And yeah, I've deluded myself into believing that's because you and I are meeting and you're happy? Yes. Oh, is that true? Yes. My wife ever hears this. I'm leaving this part in. Okay. So go ahead and introduce yourself.

Arianna 3:08
I'm Arianna. And I'm Dora's mom. She is almost eight, and was diagnosed. A little less than two years ago.

Scott Benner 3:20
Okay. So she was diagnosed when she was six. And I am now under a lot of pressure to remember as much about Dora the Explorer as I can so I can make silly jokes throughout the hour. We'll see what I can. At the moment, all I have is Swiper in the map. So we'll see where I go from there. Okay, she was diagnosed two years ago when she was six. Yes. Okay. Do you have type one? I do not know. Do you have anything celiac? Thyroid?

Arianna 3:50
Nope. Allergies.

Scott Benner 3:52
I have allergy sometimes to How about in your family line? Your mom Grandmother, father?

Arianna 4:01
No. In our family, there's type two, and gestational. And very, very distant. Like, great, great. Great. Great. Great, great aunt had type one.

Scott Benner 4:17
Yeah, that's a that's family line. Alright, and I can't the Dora have a dad. She has a dad. No, not your Dora the one from the cartoon?

Arianna 4:29
I don't know. See.

Scott Benner 4:30
That's what I've been thinking for the last 30 seconds. I'm like,

Arianna 4:34
I know Dora the Explorer. How to Mom. All right. Well,

Scott Benner 4:37
I mean, everybody gets a mom. But I mean, I guess everybody gets it, dad. So hold on a second Dora the Explorer, this assistant father.

Unknown Speaker 4:48
Yeah

Scott Benner 4:54
she does have a father. His name is Cole Marquez. He's the father of Dora. Isabella and a husband of Miami. He and his wife appeared in several episodes of Dora the Explorer. I hope he gets residuals. Okay, I don't think he I can't believe that. Okay. Dora has a father. How about your father? How about your daughter's father? We all together. Yeah. Nice.

Arianna 5:23
Watching them right now inside.

Scott Benner 5:27
Alright, cool. So we have a nice little family unit going on. Are there any other kids?

Arianna 5:34
Yes. A three year old?

Scott Benner 5:36
A three year olds. Oh, wow. Okay, cool. All right. So why did you want to be on the podcast?

Arianna 5:44
I wanted to talk about the struggles of the caretaker, with their own mental health and how it impacts the management of the child's diabetes.

Scott Benner 5:59
Okay. Is this something you're just wildly concerned about? For other people or something you're going through?

Arianna 6:06
Something having gone through?

Scott Benner 6:08
Let's start at the beginning then which is the best place to start. When Dora's diagnosed, can you kind of describe how it made you feel?

Arianna 6:21
A sense of relief?

Scott Benner 6:23
Oh, okay. Well, there was an answer I didn't expect. So she had been sick, I'm guessing and you didn't know what was going on.

Arianna 6:30
She had been having night terrors for about two years. And I'm pretty sure that that was her first symptom. Could they tantrums during out throughout the day, because of a lack of sleep? Right. And, you know, then it progressed. And about nine months before diagnosis, I took her to the pediatrician about her excessive water drinking. And she brushed it off as allergies. Okay, then we moved States

Scott Benner 7:14
took it away from that doctor for other reasons.

Arianna 7:18
For other reasons, um, and when we moved, we unknowingly traveled 16 hours in a car with the type one diabetic. And we had to wait about six weeks to see her pediatrician here. And she was very concerned, she was shocked that the pediatrician before brushed it off and came up with a game plan. And we found out two hours later, four hours later that her blood sugar was 1070.

Scott Benner 8:01
Jesus. That's insane. And that was the beginning. Well, let me go back for a little bit. Next question then. So dealing with night terrors for a long time with a young child. I mean, even if that's the only thing that ever happened. That seems like a lot. That's not something. Yeah, like when you're like, 1820 25 like you don't want me to get married and have a kid like you never think it'll wake up in the middle night screaming like someone's trying to murder it. So she was there. She wasn't she just seemed gone. Yeah. Alright. Okay. And so do you? Do you? Are you supposed to wake them up? Like, what's the process.

Arianna 8:43
Night terrors are similar to like night walking, or sleepwalking? Where you don't really want to wake them up because they're not awake. So basically, we tried everything not to get too deep into that still processing all of that and therapy. But it was tough, cuz some of the time I was pregnant, and then had a newborn and my husband was working nights. So it was not a fun situation. It definitely played a factor in my mental health.

Scott Benner 9:21
Okay, so that so let me let me ask you prior to this, did you have any issues with your mental health prior to that?

Arianna 9:29
Um, yes, but nothing to where I needed to seek help.

Scott Benner 9:37
Okay, so what I felt you felt okay. Can you give me like a brief like high level overview of how you felt prior to that, like what are the some of the things you were struggling

Arianna 9:47
with? Oh, um, some of its personal don't, but some of it was very last down. I was not present in my body. For context, my diagnosis is PTSD with depressive mood and anxiety. Okay. So some PTSD from a personal experience when his daughter was really when door was really little. That got suppressed a little bit. And then as the night terrors continued, it exacerbated everything, to say the least.

Scott Benner 10:37
Alright, so I'm very interested, but I think us having our video on is messing up our signal. Can you shut yours off? I'm sorry. Yeah, but let's see if that if that helps a little bit. So, okay, so you had something going on, we're not going to dig into. And it was, you know, it was there, and you were managing. And then you have a new baby, only a few years old, and she's having night terrors. And then that sort of just pushes you a little farther, I guess. Yes. Okay. And then it pushed you have much farther? Yes. Do you have context for why? Meaning? Was it the concern for her? Was it the adrenaline from someone screaming in the middle of the night? Like, was it the wonder of is, when is this going to happen? Like, what about it? Do you know?

Arianna 11:29
I'm, I'm sure lack of sleep played a huge factor. Because at the end, so in the last six months of her night tears before diagnosis, it was guaranteed she would have at least one that would last at least 30 minutes in the middle of the night. But then they continued. And sometimes it was two or three times in the middle of the night. Mind you. I had a new one. Oh, wow.

Scott Benner 12:00
So it kind of mimic the unpredictable scheduling. Some people will talk about low blood sugars, like get a low blood sugar overnight, you fix it, you think, Oh, this is it. And then 20 minutes later, it's low again. And like that, and so there was never the idea that a you were safe to go to sleep or be that even if you fix the problem, that it was gonna stay fixed.

Arianna 12:22
There was no fixing, and I had no one to help. She just lived through

Scott Benner 12:25
it. Yeah. Oh, so it's a process. So it's a problem. Additionally, that there's no fix for it. So there's just Wallaces happening. You just hold her or what do you do? Are they violent?

Arianna 12:44
I don't remember much of her night terrors other than they were horrifying. To have to not see your child in your child is an experience that's

Scott Benner 13:00
interesting. So she's like a zombie. And there's no connection to the kind of vessel you see in front of you in the person, you know?

Arianna 13:07
Yes. And her lack of sleep affected her daytime mood. Yeah. So it was a never ending cycle.

Scott Benner 13:17
And then are you saying that she goes on insulin and night terror stop? And that's that?

Arianna 13:21
Pretty much?

Scott Benner 13:24
Huh? Did a doctor offer you any explanation for that?

Arianna 13:30
Um, one of the diabetes educators in the hospital said she probably was type one for a while because of how high her agency was, and that it's not uncommon if you're sleeping and have high blood sugars to have wacky dreams or have nightmares. Okay. So, in my belief, and knowing my child, I'm 100% positive of the night tears were a result of high blood sugars.

Scott Benner 14:11
And they have stopped.

Arianna 14:13
Um, I think we had five diagnosis. And that was in the first two months after diagnosis.

Scott Benner 14:29
So in the last 18 months, you haven't seen one? No, oh, wow. Well, then let's hope that that was not. Yeah, but that's crazy, isn't it? Yes. So you, you move, luckily, and get to a doctor that understands that, you know, extreme thirst and small children's not to be ignored. You get your diagnosis. Did when the night terrors stopped? Did you go huh? Like is that The first time you saw the connection between that and diabetes like I imagine she wasn't diagnosed with diabetes, and you were just like, well Torres diabetes. I imagine these night terrors are gonna stop now that we give her insulin. Like I bet you you were surprised when they stopped.

Arianna 15:13
I'm sorry, I'm thinking Don't Don't

Scott Benner 15:19
be sorry. dramatic pauses are great. People aren't sure if you're crying. Oh, I wonder if she's upset? Do you think he made her upset with a stupid questions? People are not upset.

Arianna 15:34
I think I was more surprised at the light that returned in her eyes that had been missing. When she had been on insulin for 12 hours. It's quick. And then I knew like she had a massive night tear in the hospital that kind of scared some of the teaching doctors had X ray her foot. I won't go into details. Um, but I knew she had returned.

Scott Benner 16:08
That insulin hits her and you just sort of see the life come back and the person you know, in their face and everything is there all of a sudden?

Arianna 16:15
Yeah, took a while, you know, but I saw signs that she was back. And I knew and I knew in that moment that things were were better. There was a answer to the night tears. There was an answer to the mood there was I was gonna get my child back.

Scott Benner 16:35
Does that relief? lessen your burden?

Arianna 16:42
Um, I mean, it creates a new burden of caretaking.

Scott Benner 16:47
Well, yeah, no. Well, that's what I'm saying. That's what I was getting to, is it you you went from like, these night terrors, and this worry and, and the struggle of dealing with them and the endlessness of it too well, the night terror stuff put, we switched it for diabetes. And I was wondering if at least that felt my guess then it wouldn't have felt manageable in the beginning. It never feels manageable.

Arianna 17:11
Um, you know, I, some of the parents on your podcast, I've heard them be devastated. After diagnosis, I do not have that. I had, like I said, sense of relief. I had hope that was gone for a while. And while managing diabetes is not fun, or easy. It it was healing in a way. And it was a relief. And it I knew that my daughter was okay.

Scott Benner 17:57
Okay. I think having answers is an incredible relief. And even if the answer is, you know, you have to use insulin now. And there's parts of your pancreas that aren't working so great, etc. At least it's an answer, because the the not knowing to me is maybe just as bad as the knowing, you know, like, at least we know, you can do something. Yeah, yeah. All right. I believe in that. Okay, so what was management? Like in the beginning? I mean, what what did they teach in the hospital? And what was it like when you got home?

Arianna 18:33
Oh, um, you know, pretty much the standard of don't die rules for sure. I was actually lucky that one of the, actually, one of the diabetes educators in the hospital was type one. And the other had children that were type one. So they were living in it. And I didn't get the 1515 rule. I got the 10 grams of carbs for 15 minutes. Rule. So not as bad I couldn't imagine if we did 15 But she at least had the hay Dora's kind of small. We don't need 15 would probably be too many carbs for her. But other than that, you know, checking in. Oh, 274 Right now she's a month into diagnosis. That's fine. We're okay with that sort of thing.

Scott Benner 19:39
How much does she weigh when she was diagnosed about

Arianna 19:42
like 4849 pounds?

Scott Benner 19:46
Does she put any weight on afterwards? Haha, yes. Right. Because she it seems like she had it for a while.

Arianna 19:54
Yes. Um, yeah, she's she's a solid now.

Scott Benner 20:01
Oh, well, that's great. Hey, listen, I have a weird question that you might not know how to answer. If she didn't have night terrors. Was there other indicators about her behavior that would have led you to believe something was wrong?

Arianna 20:16
Yes. Can when I realized that it was really wrong, we were in the process of moving. So, and I obviously didn't trust her pediatrician. So what was I going to do? Um, yes, her obsession with water was so bad. It was traumatizing. Her obsession with food. Like she ate as much as a 300 pound football player would eat. Um, he didn't necessarily

Scott Benner 20:55
I'm sorry that that flourishes eating was that at the end before diagnosis or Had that been going on for a while.

Arianna 21:04
It increased over time. And I just thought it was a growth spurt for a while. And then it continued in three full breakfast, and then a snack and then two lunches and snacks. And like three servings of dinner is ridiculous.

Scott Benner 21:23
Yeah, there's a physiological reason for that. Arden, at the very end was like, could barely move. She was just she was a husk of a person. But still, if you put food in her, she ate like, shit, like a little kid you find in the woods in a science fiction movie. You know what I mean? Like that, like she's been gone for three months. And here they put food in front of you sit there and just like, pushes it towards her face. Arda was eating like that at the end and would explode. Yeah. With your and not passing bowel movements, or Yes.

Arianna 21:58
Oh, yeah, fine. Totally. I

Scott Benner 22:00
was fine.

Arianna 22:01
The thing. The thing that changed like was her body. She didn't really lose weight, because she was eating all the time. She was full of food. But she got incredibly skinny, but had like a pregnant belly.

Scott Benner 22:16
Interesting. At the, the handful of days before Arden's diagnosis, she was still in a diaper. And her bowel movements were hard. They were crushable like you, you could pinch them and they would break apart like, like a dirt ball that baked in the sun. It was yeah, she could barely get them out. Just really, I don't know I enjoying. I'm oddly enjoying talking through this with you. Because I am assuming it's in the last two years now that you know more dawned on you that she was really on the edge of death your daughter?

Arianna 22:52
Yeah, she um, yeah, there was some some real stuff going on that was extended, but, you know, health care providers that actually listen to you. Big deal, um, is incredibly important. And I'm so thankful for her pediatrician. And the fact that we moved and thank goodness nothing happened. I mean, feeding a diet unknown diabetic. pancakes and syrup while in the car, like it could have been disastrous.

Scott Benner 23:23
Yeah, you were close. You really were I wonder how long it was like that. But I mean,

Arianna 23:28
and she was the craziest thing she was only mild DKA

Scott Benner 23:33
Yeah. Well, it's interesting if her body was kicking back in once in a while and fixing that blood sugar and then driving it way up again and then you know, you could see why our by our system was all messed up and were those night terrors and everything. Okay, totally

Arianna 23:49
look back and have answers and go oh, yeah, she was eating because she was starving to death but and just the energy was so low. I'm like you don't go to a brand new park and then just sit on the grass. So there were things that were for sure going going on. But

Scott Benner 24:14
we stood in front of the ocean and she did not appear to know it was there I remember that I remember putting her down on the beach and she didn't have any reaction to that at all. She just scary stood perfectly still. Yeah it's interesting in hindsight, right? Where you can go back and figure out afterwards you know, like after like your, you know, your your spouse of 20 years cheats on you. You start going Oh, nobody gets fro yo every night it's seven o'clock. I should have figured that out. You know, there's there's the things that looks super obvious afterwards that during their during it, you just don't say, you know, totally,

Arianna 24:51
and we were living with my mom. Before we left willingly. Everybody thinks it's odd and I don't know In she's a retired nurse from the ER, and she was like there's something off. But like, I don't really know, like it was clear as day in our eyes. But like, she wasn't necessarily like dying. So was I really going to take her the ER, like I didn't with a newborn, I was highly confused. And then we moved in three weeks. So then it threw everything off.

Scott Benner 25:29
So are you younger, too?

Arianna 25:32
I'm almost 32.

Scott Benner 25:33
So you just look really? Alright, nevermind.

Arianna 25:36
Yes, I do. Like you.

Scott Benner 25:37
If you told me like, if you told me you had her when you were 12? I'd be like, Yeah, I believe that. Because you, you look very young. So I get that all the time. Yeah, I just wanted to be certain because that could be a contributing factor. If you are a really young mother, it's easy to not be as thoughtful about stuff like that, you know,

Arianna 25:58
I was very in tune with her. It's just you have a doctor that doesn't listen. And then you don't trust that doctor? And then what do you do? Like I don't? What was I supposed to? Like? I really don't know what I was supposed to do other than nobody wanted to take our insurance at the time. And I had a newborn like, we're planning on moving like, at a certain point. It's just kind of like, well, we'll get a doctor when we get there.

Scott Benner 26:29
You needed somebody in that moment to step forward and say, Hey, I see there's a real problem here. We're not coming to a resolution. I'm going to help you figure out what this is not put it on you to do the exact right thing with the exact right person that I think that happens with a lot of health care. Yeah, I don't I don't think it's I don't even know that it's anybody's fault. But it's just that if you don't, if you don't ask the right questions, and have the right things occur to you, and how are you really in control of that? Then you don't even know the right questions to ask to spark an idea in a doctor's head. And, you know, I've just learned over the years that there have been as many issues resolved in my family medically from us figuring it out. Yeah, maybe even more so than from a doctor figuring it out. Oh, yeah. Yeah. So.

Arianna 27:26
And then, honestly, it was lack of her pediatrician. Because so we had one appointment. I can't remember if it was November or December before her diagnosis, where she goes, it's just allergies, come back in a month, came back in a month. It wasn't getting any better. I stopped counting how much water she was drinking at 100 ounces. And that wasn't even the whole day. Yeah. So

Scott Benner 27:54
Well, here's the truth. But it's, it'll seem a little disconnected. But my son was given a steroid pack for something. And he was told, like, in a week, this will be better. Well, three days later, it was worse, not better. And I drug his as right back to the doctor's office. I was like, This isn't working. And I think most people would have just waited the four days. I just I don't I've just been through this one too many times. Do you know what I mean? There's Yes, once common sense, but you don't. But I'm not judging you either. for not doing that. I'm just saying that. It's it's uncommon for somebody to do what I did, and more common for someone to do what you did. And the

Arianna 28:33
only reason why I waited was because Oh, and she had said give her Claritin, I stopped after two weeks. I was like, this isn't allergies. I'm not giving her clarity and just to give her clarity. I have allergies. I've lived with them my whole life. I know what allergies are. It's not allergies,

Scott Benner 28:51
and excessive. Excessive thirst got you told Claritin for four year old five year old. Yes. Wow. Was it really a doctor? Did you meet this person at a strip mall by any chance?

Arianna 29:06
Um, no, she was her doctor from birth? Yeah.

Scott Benner 29:09
Geez. Well, hopefully it's really you're good.

Arianna 29:13
I'm just I had issues with this doctor. I took her. For example, I took her when she was little for a diaper rash that I was 100%. Certain that was thrush. On the Friday. She said it's not thrush. Fine. Then I went home. We spent the weekend it continued to get worse. If you let diaper rash thrush get worse. It starts to bleed. Let's just say that next Monday. I took her back to the same doctor. And she was like, oh, yeah, it's thrush.

Scott Benner 29:48
She figured it out. I told you that don't get sick on Fridays. That's a bad idea. You get I mean,

Arianna 29:55
like yeah, just imagine any issues.

Scott Benner 30:00
At three o'clock in the afternoon on a Friday, I come to you with a big problem. You'd be like, Oh, I'm so close to the weekend. Are you sure you can just wait three days for?

Arianna 30:10
The same thing happened with my second daughter? She told me it wasn't. I was like, it's thrush. Please just give it its thrush. Stop. That's interesting. So we already had issues with her. But there was the type of insurance we had we are lower income. Nobody was taking new patients with our insurance, so there was pretty much nowhere to go. So I just said, fine. It's allergies. I know it's not allergies. But whatever we'll try. It waited two weeks. Claritin did nothing. So I stopped. And then I decided to monitor and her water intake and stopped counting because I got to 100 and was done. Hey, we are back.

Scott Benner 30:59
I want to ask you a question. When you said we couldn't able to take our insurance. We're lower income is the inference that when you don't have a fancy insurance policy to throw around or money to pay, co pays or or you know, a doctor cash if you have to? If you can't get help, then you're I'm asking I don't know. Like, do you get less qualified doctors? Yes. So you get like the ones that couldn't get a job where they do take insurance and they can charge you more money, etc.

Arianna 31:36
I mean, they're definitely they have too many patients. Um, and you're kind of stuck, because the amount of paperwork that they have to do is more than they want to do. And more than they get paid to do. I do feel bad for them. Don't get me wrong, they have a lot to do. And pediatricians have child's lives in their hands. And they have to also deal with the parents too. So I do have an understanding. But it it wasn't just them. It was also me too. You shouldn't have to go to the ER and see your doctor six times before getting a referral to an OB for an ovarian cyst. So it's not just that, yeah, it's not. And it's also the area we were in, right? overpopulated makes a difference to Yeah, where where we're at now. Oh, we have absolutely amazing doctors, and the same type of insurance. And I, I wouldn't change it for the

Scott Benner 32:41
world. Okay, that's interesting, because that's what I was trying to figure out. And I'm not I'm not generally saying that, you know, it's not like the chef at John George doesn't work at McDonald's. I'm not saying that. I'm just saying that, you know, you start getting people with fewer job opportunities. And then you get and then you put them into it's not it's not a condemnation of the person. It's more of the system and just the I'm trying to look at it the way it works. Not for sure. Yeah, you know what I mean? Like there's just the way the mechanism works. So yeah, you know, if you're in that scenario is yeah, it's it's an unfortunate scenario, it really is. So, but now, having gone through all of that, you're also still you and you still have the issues that you're dealing with. So are you seeking out like therapy mental health like through this entire thing. G voc hypo pan has no visible needle, and it's the first premixed auto injector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is G voc hypo pen simple to administer, but it's simple to learn more about, all you have to do is go to G voc glucagon.com. Ford slash juicebox. G evoke shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G Vogue. glucagon.com/brisk. Just going to remind you here again, T one D exchange.org. Forward slash juicebox. Take the survey if you're a US resident. I just saw it again online the other day, someone put up a photo of their meter and their Dexcom. Why does this Dexcom not work? Look, my meter says this and Dexcom says that while they're holding up a brand new Dexcom, right, that's the latest and greatest technology that they have. And they're holding up a meter that looks like it's 35 years old and has been hit by four different cars. And for some reason they think the meter must be right. Well, I get that idea. And meters are amazing and everyone should have one but you can't use a junky one and then expect it to give you good results. Instead, you should find an accurate meter, something that is cutting edge, like the Contour. Next One, the Contour. Next One blood glucose meter has Second Chance test strips, which means if you touch the blood and don't get enough, that's no big deal, you just go back and get the rest, not to say that it needs a lot of blood, it doesn't. But I'm just saying, you know, sometimes you mess up. And you don't want to have to waste the test trip or have to wonder if the test result is inaccurate, because you've put on some blood and then come back and put on more Second Chance test trips. The Contour Next One is also easy to hold. And it's easy to transport in your purse or your pocket or wherever you keep your diabetes gear. It has an incredibly bright light for dark times, you know, not like dark times, like what was me, I can't get out of this funk. But when the lights are off, and there's no sun dark times, I guess I should have said at night. It's too late now. And it has an amazing app, if you want to use it, it'll sync to your Android or iPhone. Now if you want more data, right to track, it has that. But if you don't want to use the app, it doesn't matter, you can just use the meter by itself. And it's wonderful. It is literally the easiest to hold, most accurate meter that I've ever used with my daughter. Contour next one.com forward slash juicebox. On top of all that it's a really comprehensive website, website. Did I say website the first time, it's a really comprehensive website, that will explain everything you need to know. And you can even see other meters that they have there. In fact, there's a test strip savings program, you could look into some people are eligible to get the meter for free and the meter doesn't really cost very much. Actually, it could cost you less in cash than you're paying for your current meter through your insurance. And that crazy, you might be paying more through your insurance to feed test strips into your old janky meter that doesn't work, then it would cost you just reach in your pocket to buy the Contour. Next One. It's amazing. I mean, I'm not sure if that's going to be the situation for you. But you should go find out contour next one.com forward slash juicebox links in the show notes, links at Juicebox Podcast COMM When you support the sponsors, you're supporting the show.

Arianna 37:19
Yes, slow. On top of the night tears and having two kids, I noticed I needed some help. I was not feeling I was not there. So I'm where we were living before I sought help. And I saw her for maybe six months, maybe a little more. And then we moved on. And I thought I was okay here until I wasn't. And then my doctor was like, I think you should see a therapist. And I said I pretty sure you're right. Um, so I I sought out a therapist, which is a feat in itself. And I found one that I absolutely love who actually gave me a diagnosis. I hadn't had a diagnosis prior, or that I knew up. And I've been seeing her for about six months, and things are so much better.

Scott Benner 38:30
Hey, this is gonna maybe just be 100% Wrong. But have you ever been tested for hypothyroidism? Or Hashimotos?

Arianna 38:39
Um, I had my thyroid tested. Because my cycle decided to disappear. And it came back normal.

Scott Benner 38:52
What came back in range? Or do you know what the number was?

Arianna 38:58
Um, I could probably look through my stuff, but it came back in range.

Scott Benner 39:07
Sorry about that. The reason I ask is because the range for thyroid and this might not be your case, but but lack of energy, depression, hair loss, menstruation changes, all kinds of different things are controlled by your thyroid. And you'll get this test and they'll say oh, it's in range. But there are like ninja level thyroid doctors that will treat your thyroid level if your TST if your TSH is over two and there are plenty people who will come back at four or five and they'll be like, Oh, you're in range, you're fine, but a tiny bit of hot thyroid hormone ends up changing a lot of that stuff for people. So I've known people who and spoken to people who thought they were depressed who I really needed a thyroid medication who, you know, thought they had all other kinds of issues that need a thyroid medication. So like when you go look at that test, if that TSH is over two, it's worth going to a doctor that will treat your symptoms, not just the number. Does that make sense?

Arianna 40:21
I also had whatever the testing is for autoimmune diseases, because of allergies. Um, and because Dora has an autoimmune disease. And it came back negative. So

Scott Benner 40:41
they are the the, the antibody testing, they did that during the thyroid

Arianna 40:47
was separate. But yes, everything. Everything came back. Normal.

Scott Benner 40:54
Okay, yeah, I saw I can be 1,000,000% Wrong. I just get real sad when I know that people miss that. And it's such a simple thing.

Arianna 41:01
Oh, totally. There is some thyroid issue in my family history somewhere. I don't know exactly where but I've been told by my mother. That

Scott Benner 41:12
is, yeah, I would want to know what your test said. It came?

Arianna 41:17
Yeah, things came back in range. And you know, while there's always the possibility of, you know, something like that, I can tell you therapy has completely changed my life.

Scott Benner 41:32
Yeah, I'm not disregarding any of the things that you figured out your mental health at all, I was just saying, like, for everybody listening on top of you, like, you have to understand that when I'm doing this with you, I'm also trying to think of what the people listening are thinking about too. So of course, I'm doing a little of both talking to everybody. And just you at the same time, I tricked them. By talking to you, do you see what I'm saying. But I'm talking to the rest of you, unless you're hearing my voice in your head when you don't have your earphones on. And that in that case, that's not real. And you should see. And for all of you ladies that are talking lately about on popping up in your dreams, it's weird, but keep telling me, it's also under, thank you very much. Okay, so you're, you're getting better. And at the same time, you're figuring things out for your daughter. But to go back to what your email said about how the diabetes impacted your mental health. Is there anything you want people to know? Is there something you wish you had known? What did you figure out? And then I want to ask you some stuff about type one.

Arianna 42:41
I think I figured out that it's okay to let go a little bit. Because, because it's okay to let them be a kid. It's okay to focus on yourself. It's okay to not have perfect graphs, it's okay to continue to put in the effort. And all that it takes to learn and manage type one with a growing child. But it's also okay to take a step back and realize

Scott Benner 43:22
you don't have to get it all right on the first day.

Arianna 43:26
Well, even over time, I worked really, really, really hard in the beginning, I studied her graphs I headed down and then we got the pump to swim. Yeah. Things change, it's a totally different world and realizing, okay, you have to go back to basics. You You have to almost relearn diabetes, it's okay if extend Bolus does not work for your child. And it's okay to let go of striving for a number in the fives and a one C in the five, which is incredibly wonderful, but not at your own detriment. If it's hurting your mental health and doing more damage for you than good. It's okay to step back. I'm not saying sitting within a one seeing the 10s is okay. But it's okay to let go of the graph studying it's okay to put your oxygen mask on first and realizing that they're getting insulin that they probably weren't getting before, and that is absolutely better than nothing. And it's okay to step aside and focus on You so that you can be in the best spot possible to teach them how to manage their own diabetes. Okay.

Scott Benner 45:13
I, so there's a tipping point. And if it gets too far one way, then you're no help at all. Yeah, right. Yeah. And so you're trying to keep a balance of your sanity? and general health about type one? Yes, I gotcha. It's easy for the overwhelming nature of learning about type one to consume you. And then yeah, how to get lost.

Arianna 45:45
Yeah, and if you're somebody that has, you know, anxiety, and some of my anxiety has to do with her numbers, I've had to stop looking at her graph as often. Because it was it was taking over, it's, it's okay to, you know, I went from having her alarm at 122, putting out 150 for my own sanity. And that's okay, because we're still catching it early, and readjusting my goals for her, because she's healthy, she's growing. She's learning, she's smart. All of these things. She doesn't have to be perfect. I don't have to get her diabetes, perfect. If it takes, you know, five minutes of showing her because she's younger, how to read the nutrition label on something and judge how much she's eating, and how much insulin she's going to need, along with having her do the math herself. So teaching her those things, and maybe not getting insulin in her five minutes sooner just to do it. That's okay. Because she's learning something out of it. Okay, it doesn't have to.

Scott Benner 47:16
I'm sorry, I cut you off. But it was there. Was there beyond your own motherly instincts and your desire to do well for Dora? It? Was there anything that made you feel like everything had to be perfect? Like, why did everything? Do you have a knot? Why, like, tell me why? Because you're wrong. And you know, but do you? Can you imagine what the influences were? That made that feel like the most important thing in the world?

Arianna 47:46
Yes, because when she has high blood sugar for too long, I can see the child pre diagnosis. Okay. The mood changes. I was worried about night terrors. I was worried about the tantrums that happened I was worried about she fights with her sister more when her blood sugar is higher. So I was concerned about keeping my child that I got back.

Scott Benner 48:20
So where are we? How long did it take you to figure out that you couldn't do that?

Arianna 48:29
Um, a little over a year.

Scott Benner 48:33
Okay. And where's her a onesie at now? For example.

Arianna 48:39
I have no idea. We haven't had it. The last time we had it. It was a 5.7. And I felt which was great. And wonderful. And I cried, and I remember hearing your voice in my head, saying, This is what it feels like to you know, you're like, Hey, keep doing what you're doing. Like, see you next time.

Scott Benner 49:04
Yeah, like, it's just gonna stay here and you're just gonna keep it so. So are you tracking are on any kind of app right now? Like, since you've kind of made this adjustment to not being so closely guarded about stuff? Do you know? Do you know? I mean, can you guess where it is? Like through Do you have Dexcom? Like through clarity or sugar majors? Yeah. And I don't look at it. Okay.

Arianna 49:29
Um, I think a lot I mean, I look at it every once in a while just to see where she's at. But she's probably under 6.5. Like, I want to say on average, her blood sugar's around 120 Like an average for the day. But I I manage as we go, and I try not to look at I try not to Look at it so much, because I try not to keep her in the two hundreds. So I know, I know that she's okay. I know that, you know, above 140s, you know, there can be long term damage and yada yada. But I know that on average, you know, I do have my goals, I'd prefer her to be under 100 When she wakes up, I'd, you know, I look to make sure how stable her line was, if it was 150 all night, and stable. I'm cool with it. I'm not gonna like, I can't lose the sleep over it anymore. I can't hurt myself over it anymore. while still being safe. And acknowledging what's happening. I still try to catch the highs. Like I still, I still try to catch the lows, but I'm not so Dare I say obsessive over it?

Scott Benner 51:03
Do you think that they'll be enough time that can pass where your growth and understanding of how to do things in general will just lead to lower stability without trying?

Arianna 51:17
Oh, I've done it for sure. There's been days where I'm like, her blood sugar was around 100 all day, and I barely thought about diabetes. And it was super easy. So there's totally been days like that. But I think for my mental health right now and the things that I'm processing in therapy, that I I need to stay here for a moment. Need to continue to process you know the time in my life when she was having night terrors and how that affected me and I have more processing that I I have to do, but I will come back to it. Like I still every once in a while maybe like once a month I come back to Okay, let's reevaluate what's been going on like her her Basal rate at this time probably needs to be adjusted or you know, but I do give myself some more leeway, but she's not. And I think because I worked so hard in the beginning and got her a one C down to a diagnosis, she was 17.6 to a 5.7 in just over a year. Well, I think I gave myself some leeway to cut can I give us grace? Can

Scott Benner 52:45
I ask a question? If like this is hard to imagine, cuz I'm gonna make you make something up. But if whatever happened to you personally, the gave you the issues you have and the PTSD and all that stuff. If that did not happen in your life, do you think the diabetes stuff would have been less overwhelming?

Arianna 53:06
It probably would have been more how so? Um, I've learned far too much about myself through processing all of my traumas, and kind of what makes me tick. To to know that this is this is just something if I hadn't dealt with those things and learned what I've learned. It would have been harder.

Scott Benner 53:48
Are you saying that your trauma drove you to learn more about yourself which create a betterment that would not have existed without the trauma you wouldn't have gone and looking for that Betterment without it? Yes. Okay. So you have a better clearer understanding of who you are and why you do what you do. But you still have the residual effect of the actual thing that happened to you. Yes, okay.

Arianna 54:13
I, I have an understanding of what makes me tick, I have more understanding of coping mechanisms, and my communication skills have gotten so much better. And it's just made me that much stronger. Mentally. Then, like, I probably would, I probably would have had the same feelings that some of the other parents have just devastated and wishing for the normal. And, you know, just that loss that happens. Don't get me wrong. I grieved some of those things too. But going through what I've gone through, gave me this fire, this determination and strength within myself that I don't think I had before.

Scott Benner 55:21
Is there a pathway that you're looking for or aware of? Or is your therapist helping you? I mean, I want to ask you, okay, so to boil it down to simple stuff, right? If, if I walk outside and somebody throws a rock at my head, and it hits me in the head, and it causes me damage, and I can do the work to come back from the damage that it's done, but I can't seem to let go of the memory of the rock being thrown at me. So every time I go outside, I have this underlying anxiety. How do we let go of remembering that the rocket thrown at me? Is that possible? Is that are you hopeful about that? Or is that not something you're considering right now.

Arianna 56:09
There's so something I've personally been working on in therapy and what my therapist calls timestamping. So, and I'm no longer living in my trauma, there's a timestamp, that feels like a time that happened. Whereas when you're still in that trauma, it feels like it's still happening, you still like you still feel like you're in it. So some of my trauma has been timestamped, some of the trauma that has come from the night terrors, and all of that prior to diagnosis hasn't fully been time stamped yet. So it's something that I'm working on. I think, once I process some of that, and get some of that time stamped, it'll definitely bring me to a place where I can be more. I don't want to say more active in her diabetes management, because I'm still active. I'm the sole caretaker, I do all of that. All right, where I can come back to it with a more

clear mind a more present mind. So processing it is definitely needed. But I needed to process the other stuff. First.

Scott Benner 57:46
I don't have anxiety. But I know enough people who do and I've spoken to so many people that have that. I understand it, I think enough, you know, but I don't have any, like personal contextualization for the idea that that you always feel at like, I never feel anxious about anything. And so like, you know what I mean, I know, you've probably heard that and you're like, well bottle that because that I would like and so and so I can deal with and I think many people listening to this, who don't have anxiety, who I'm sure feel for you right now, but don't, again, have any context for it. They don't understand like when something goes wrong, I fix it and then I I never think about it again. And I never wonder if it's going to happen again. And that's a I'm realizing talking to you and having talked to other people in the past. What a just a general blessing that is to not have to worry about that. Because otherwise, you just always feel like a saber toothed Tigers gonna jump on your back and rip your head off. And you have that, that that heightened sense of whatever that is inside of your body. So do you take medication for that? Or is it just therapy you're doing?

Arianna 59:00
Oh, yes, I am on daily medication and then I have what's called emergency medication.

Scott Benner 59:08
So something like a panel or something like that if you have an attack, I'm guessing like to say but like in that in that range, like something that like lowers your heart rate and shows you the hell out like a lot of stuff.

Arianna 59:21
Yeah, it definitely brings me down to level two. Yes, so when there's some high stress stuff, I definitely you use that and along with my therapy coping mechanisms. I I try not to take the emergency medicine. Too often I tried to use all my skills and coping mechanisms first, but it's there when I need it.

Scott Benner 59:53
If I said to you, if I said fill in the blanks, my spouse does or doesn't understand my anxiety? Is it something it's difficult to explain to another person even though they're with you?

Arianna 1:00:10
Um,

Scott Benner 1:00:11
do you think the people around you really understand how you feel when this is happening? Or that it's happening constantly?

Arianna 1:00:19
These see you, I think I'm, I mean, I'm kind of, you can see to my face. Yeah. I don't think he knows what it feels like. But he knows what it looks like.

Scott Benner 1:00:35
And then what can he do for you in those moments? Is there anything?

Arianna 1:00:42
I'm currently learning some of that I'm helping, like, for, for some reason, his way of helping is I did the dishes. And I'm like, Cool. I didn't have to do it. It's one less thing that I have to worry about. And so taking some of that does help. But it's always the dishes for him.

Scott Benner 1:01:06
Well, you realize, in a boy's head, they're like, I gotta have sex with you. Like, that's the only thing we really can think of. And so then from there, like, I guess we're do the dishes, like, if that's real? I don't.

Arianna 1:01:17
I got kind of lucky. Well, yes. Those are lots of his thoughts. He's very aware of. Yeah, no, I'm not even touching that subject at the moment.

Scott Benner 1:01:28
I have to tell you, there are a large group of men who are listening right now, in the middle of like, you know, if you if you went down in a plane crash in a cold place, and you'd look like you're gonna die on the side of the mountain, the guy would be like, I don't know if sex would help. But if it would, I'd be willing to do.

Arianna 1:01:43
Yeah. Trust me, like, you'd be like, could

Scott Benner 1:01:48
you make a fire? And you'd be like, alright, but

Arianna 1:01:53
hey, is it like, the kids are asleep, like, what's going on? And I'm like, her blood sugar's at 200. I'm trying to get it down, leave me alone.

Scott Benner 1:02:03
So all of my ideas don't sound relaxing to you. I guess I'll go do the dishes.

Arianna 1:02:09
Like, fine. I mean, they're asleep. I'll play video games. Now. It's whatever, while I'm sitting there, like, will catch that.

Scott Benner 1:02:18
So what you're really saying is it makes sure I'm understanding is that unlike a person who doesn't suffer, the way you do, everything, the idea of everything that needs to be accomplished weighs on you, and ups, your anxiety. And so if someone can just come in and grab one of those packages, and throw it off of you, it's a lessening effect for you. But is there any time when it's gone? Do you ever just think, Oh, well, I'm not upset or worried or concerned about anything? Does that ever happen?

Arianna 1:02:52
Yes, but that is new.

Scott Benner 1:02:55
And that's for the therapy? Yes. What are some of the things that therapist taught you that are helping you?

Arianna 1:03:02
Um,

Scott Benner 1:03:04
please don't tell me you're going out and murdering, like, blunder bridges and stuff like that or something. Right?

Arianna 1:03:11
No, like, I'm

Scott Benner 1:03:12
sacrificing goats now. It's, it's really relaxing.

Arianna 1:03:19
Okay. Know, some of it's just come with processing it. Before. This, the therapist I have now I physically could not talk about some of my traumas. Like, physically, they'd run in my head, I'd say, Okay, I'm going to say it now in my head, and they'd get stuck in my throat. And instead, I would just cry. And I have found words, I found my voice with therapy. So finding my voice. And words for things allowed me to continue to process instead of it just playing in my head and getting stuck in my throat. So talking has helped. Being able to be vocal has helped. And then with that, I've learned I'm not living in it anymore, that I can sit in the present in my body and breathe and know where I am. And not feel like I'm stuck somewhere else. Okay.

Scott Benner 1:04:51
I want to ask you a question that I want to also tell you that you shouldn't feel any pressure to answer but I want to keep it really general but I just feel like you've shared so much valuable stuff here. But we lacked this specific context. So would you say that at some point? So let me just make some guesses out loud? If you want to say yes or no, that'd be great. Or just tell me to stop asking, but someone hurt you at some point. Is that right? Like it was No, it wasn't a person. Okay? Was it a physical or emotional injury?

Arianna 1:05:29
Um, oh,

Scott Benner 1:05:31
both. Okay. Something you feel like you had fault in or something, you know, was not from your hand at all.

Arianna 1:05:42
But I had fault. Okay.

Scott Benner 1:05:47
You carry a lot of guilt from it.

Arianna 1:05:52
I wouldn't say guilt, I'd say sadness.

Scott Benner 1:05:55
Okay, like one of those. If I had a time machine, you know, where you'd go back to and what you wouldn't do that kind of stuff.

Arianna 1:06:04
I would probably still make the same choice.

Scott Benner 1:06:07
Interesting. Because at that time, you wouldn't have been able to make a different choice, or because it didn't look like a bad choice in the moment.

Arianna 1:06:15
Logically, my, my brain is very logical, logically, completely right decision. Completely what needed to be done. So that's okay, but doesn't mean it takes away.

Scott Benner 1:06:37
What came. So you did the right thing for the right reason, but the outcome impacts you that right. Yeah. That's interesting. I almost like that. You're not going to tell me what it is.

Arianna 1:06:52
I mean, no, don't tell me. Warning. I can tell you seriously,

Scott Benner 1:06:56
you'll tell me but you won't tell everybody else. Yeah, oh, hell, then we'll get off. And you can totally tell me Yeah, screw the rest. I still gave you a good podcast. And so did she, okay, you can't be mad about that this is private. Well, I'm happy that you feel better, and that your therapy is moving you to this place. I'm happy that the diabetes stuff is manageable, and in a good safe spot, and that you feel like you might go back to it later and tighten it down. When you have the ability to it is super commendable, that you were able to take some time for yourself and some space for yourself. A lot of people struggle to do that. And you figured it out pretty quickly. It sounds like you were pressured into it by your circumstances to some degree, but still a lot of people still don't bend they just go down with the ship. You know, they mean you were like how about if we all stay alive when we figure this out and spread some of this horror out over over time.

Arianna 1:08:00
Not to get too morbid, but it got to a point where I couldn't continue living this way. But there was no choice but for me to continue living because of Dora. So I had to I had to make that choice to you know, put on my big girl pants and put work in it had to be done. I have

Scott Benner 1:08:35
to say that I imagine I could be completely wrong but I imagine that most people live in that general space that things that need to be done feel bigger than what you can accomplish that sometimes they don't feel in any way like a satisfactory lifestyle for you. You know people think oh I wish I was doing this or I wish I didn't have to do that but I do think that most people just do what they need to do. And I wonder if I'm sorry I wonder how much of like more recent society gives people especially in in in places like American other you know you know other countries like that that have the thing excuse me concentrating on the fact that I have to clear my throat instead of talking people that have conference like this you know even you know you the poorest people in America live better than other people in other places in the world right? Like if the idea that everybody can like we raise our kids like you can be president which I guess is not as great as it used to be but you know you can be president you can be the accompany you could be rich, you could be famous, you can be an athlete, we no one ever just like hey, you know what you could do? You could probably manage an Arby's like, you know, we don't talk like that, so expectations are super high for success for money when you're younger, and for happiness to everyone gets promised happiness. And I don't know that that's exactly the way life works. I don't think we all get to run around with our like two and a half kids and a Volvo station wagon and a house it has like, you know, it's got an acre, like I don't think most people have like I don't think that's really how it works out for everybody. My husband's grade he's home by 430 helps with dinner. You know, I wear you know, like it's not it's not Leave It to Beaver, I guess is the way I'm trying to say it. And, and yet people fight against it constantly, and it makes them miserable. The the expectation for perfection makes people miserable. Instead of just going like, this is my life. This isn't so bad. You know what I mean? Like, I'll be happy here.

Arianna 1:10:50
Sitting sitting and gratefulness is is highly important. Yeah. Be grateful for all that you have. I've had this conversation with Dora, where you know, she has days where I hate diabetes is what she says, I wish I didn't have it. Boy, do I wish you to have it. But be grateful for the technology that we have. Be grateful for the type of insulin that we have. Be, you know, just to even say yes, it sucks. I'm not saying that it does it. I'm not saying that's not hard. It's for sure. Not fun. But hey, you have this really cool piece of technology that people like, worked really hard on to make it so that you don't have to have a strict regimen like eating regimen and insulin regimen, where you can pretty much say, hey, I want a piece of candy, and then get the piece of candy.

Scott Benner 1:11:59
Yeah, there's a lot of a lot of perspective that comes with knowing that, you know, prior to 1920 ish, you would just be dead if you had type one diabetes. Like that's, that's not that's 100 years ago, that's a very short amount of time ago. You know, like you just made it like, think about it. If you were diagnosed today, you basically just made it in under the wire. Like it's Yeah, yeah.

Arianna 1:12:19
You know, knowing, hearing, listen to your podcast and hearing the people that have had it for 20 years knowing what the technology was then, even 10 years ago, five years ago. Yeah, but it is when she was diagnosed, I could not be more thankful.

Scott Benner 1:12:37
Right. But being diagnosed in the 60s, the 70s, the 80s in that range. I couldn't, well, all the scary stuff that you still hear today. Those stories come from that time, because that was expectation that you hear people come on here, who are like, I was told I wasn't gonna live to 30. Or, you know, people that come on tell you like, they were told, like, you're not gonna get to have kids, you're not gonna have a life, no one will marry you. Someone was told. Do you know what I mean? Like, that's not that long ago in history, been diagnosed with type one diabetes 3030 years ago, somebody might have told you well, you know, give up on all of your dreams and get your living in now, because this isn't going to last very long. That was

Arianna 1:13:19
the two things I think they said in the hospital was, she can do anything that she wants to do. She just can't join the military. And I was like, that's something. And then two was be a pilot. And they said, Well, that's changing. And it's changed since then. Fine. I mean, it. I highly respect all military. But coming from military, my father was in the military, I am relieved that she can't. So for me personally, I was like, Okay,

Scott Benner 1:13:57
anything. But I understand what you're saying. And I just think it's important, right? It's important. And it's not just important about diabetes, it's important about the rest of your life. I mean, listen, there's reason things are written on coffee mugs, and T shirts. The reasons are, if you would just believe them, your life will get better. You know what I mean? Just be grateful for what you have is a big one. Some people have more, some people have less, you know, it's not about more or less, it's about here, like you just need to be able to look up and go my life's pretty good. This is all right. I wish I had more. I wish I had that. But I don't. These are the things that I have the people I'm around, let me make the best of this. And if this is so bad, then let me find a pathway out best I can. I might not get as far out as I want to, but let me see if I can't keep bettering my situation. Yeah, that is some real comfort in in living that way.

Arianna 1:14:52
And, again, I have that that odd thing with diabetes where I was relieved and I have I have the gratefulness of my child his back that I get to live with every single day.

Scott Benner 1:15:12
Yeah. That's amazing. Okay, I, I gotta wrap this up. I'm running low on time. I apologize. But I'm very happy for everything that's happening for you. So far. I didn't get to ask you, but the podcast has generally been valuable for you.

Arianna 1:15:28
Yes, of course, I'm learning. I go back to the the Pro Series and you know, all of that to go back to basics to go, what am I doing wrong? Because sometimes in the funk of depression and anxiety, I forget things. And I go back and I go, Oh, yeah, I got to start there.

Scott Benner 1:15:55
Well, I know I've said this before. And you might have heard me, but I'm not embarrassed to say there are times where things get upside down here. And I, I stopped myself and think if someone came to me and said this was happening to them. Well, what I tell them? Yeah, and I think that's my version of listening back to episodes. I go, I would say to do this, and this and this. Okay, well, why the hell am I not doing that? And then, yeah. Yeah, I sometimes people say like, what would Scott say? Like, I sit in my house? And I think what would I say?

Arianna 1:16:28
That has to be a weird conversation in your head.

Scott Benner 1:16:30
I gotta be honest with you. One of the creepiest things I've ever done in my life is search for something in my own website. So like, there's like this weird feeling when you're like, oh, I don't know the answer to this. But at some point in my life, I did and I wrote it down. I'm gonna go look, and I'm on my own website, searching it that makes me feel very ridiculous while I'm doing that, like, why can I not remember this? And then there.

Arianna 1:16:54
It also shows how informative your podcast is, because

Scott Benner 1:17:01
well, at the very, at the very least, present Amy really does agree with you know, past me. That's why I joke about Jenny when people are like, I say how great Jenny is, but really, when you listen, Jenny and I agree about a lot of things, if not most things about managing diabetes, so like, do I do I like her or do I think she's smart? Cuz she but I shouldn't cast that aspersion I think Jenny's terrific. I'm just making a joke. But no, it's weird sometimes to have that thought. But I'm glad it helps you and anybody else listening who is valuable, too. I thought this was a terrific conversation. I want to thank you for it and I'm going to hit stop so you can tell me stuff you're not gonna tell other people so hold on was

a huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kibo pen at G Vogue glucagon.com Ford slash juicebox you spell that GVOKEGL You see ag o n.com. Forward slash juicebox. And also like to thank the Contour Next One blood glucose meter for being a longtime sponsor of the show and remind you to go to contour next one.com forward slash juicebox. Are you a US resident? Please take the T one D exchange survey AT T one D exchange.org. Forward slash juicebox.

Thank you so much for listening. I really appreciate your support. I'll be back very soon with another episode of The Juicebox Podcast.

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#573 Adoption and Diabetes

Abby has two adopted children and an amazing story.

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

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends, and welcome to episode 573 of the Juicebox Podcast.

On today's show, I'll be speaking to the mother of two adopted children, one of whom has type one diabetes. Abby's on the show, specifically now in November because not only is it diabetes Awareness Month, but it's National Adoption Awareness Month as well. And I'm adopted to, so I don't know why that matters. Sorry, I just threw that in. Now I'm feeling stupid for saying it. Let me go to something else. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Speaking of diabetes Awareness Month, I'm still trying to get as many people as I can to sign up and take the T one D exchange survey AT T one D exchange.org. Forward slash juicebox. It was my goal to put 1000 people on the survey this month and we're off to a pretty good start, but I definitely need more. So I hope you can help T one D exchange.org. Forward slash juicebox you have to be type one, or the caregiver of a type one and be a US citizen.

This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod dash and the Omni pod promise. Find out right now if you're eligible to get a free 30 day trial of the Omni pod dash at Omni pod.com forward slash juice box. Later I'll tell you more about that free trial and explain with the Omni pod promises. today's podcast is also sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor. You can head there right now to their website dexcom.com forward slash juice box to find out more about the Dexcom G six. Where to get started. Were the same CGM that Arden's been wearing for forever@dexcom.com Ford slash juice box.

Abby 2:18
I'm Abby, my family and I live in the Nashville Tennessee area, you will pick up a southern accent as we were talking, it sneaks out every now and then married for almost 18 years, my husband as a firefighter. So that has an interesting dynamic. We have two kiddos. My oldest is eight and a half. And he has our type one. And our youngest. also has special needs a different sort of special needs. She is seven. So that's my crew.

Scott Benner 2:51
And just so we know like right out the gate. Both the kids are adopted. Yes, they're

Abby 2:55
both internationally adopted. My oldest, Shay is our son. He came home when he was one. We actually got him on the morning of his first birthday. He is Taiwanese native Taiwanese. And then our youngest came home at three and a half. And she is from China.

Scott Benner 3:13
So that's us. Can I ask you what made you adopt?

Abby 3:17
Oh, yeah, that's like a whole separate podcast. We'll make it all part of this one. Yeah, no. So my husband and I had been married for about 10 years, we knew that we wanted children. We also were in alignment, that that wasn't happening, the natural biological way. And we did not want to have any type of like, interventions to make that happen. And so my heart was drawn toward adoption. Really early on. He has his own story. But he would tell you that he had to wrestle with some pride around well, this isn't like the way I thought we were going to start a family and kind of struggled with some maybe ego, even if he was being honest of this isn't what I expected. But obviously came around and we were in agreement that that was what we were going to do to start a family. And yeah, we started on the path of

Scott Benner 4:09
going to adoption, pick through that for a second show. i You don't have to obviously share anything you don't want to share. Why is it hard not to feel like it's your fault when you can't conceive?

Abby 4:20
Oh, that's a great question. Um, I think, you know, we did go through diagnostic testing. And so we did have answers. I do say, I will say this, I think there's something unique and as a female, people automatically assume there's something broken in you as the the woman in terms of like, this is what a female is supposed to be able to do. And I think, yeah, there was a season of life where I felt sort of broken and that and that things weren't functioning as they should be like, if I'm also very honest, this is part of my story. This sounds probably kind of strange, but up until that point in my life if I had wanted something to go a certain way of my life like it had happened, you know, where I went to college, I got my first choice. Like, when I graduated, like what job I wanted, and I, you know, things just sort of always fell into place for me. So just from a personal, honestly, from it shifted my faith pretty substantially in terms of Oh, like, I'm actually not in charge of any of this. And this is I'm not in control, and my life isn't gonna just be plotted out the way that I think it's gonna go. And so that there was a grieving process in that. Yeah, this was supposed to be something that was easy, and it's not for us.

Scott Benner 5:36
How old were you when you started trying?

Abby 5:39
Um, we got married very what we, what we now know, was very young, we didn't think we were young, we were 23 and 24. And so I was just out of grad school. And so we were when we got when we started trying, so I was two, Gosh, 28,

Scott Benner 5:54
I guess, after you started trying, how long before you thought this isn't gonna happen?

Abby 5:59
Um, gosh, so the doctor won't even talk to you about that conversation until you've tried for a year. So for a year, we were sort of in like, No Man's Land of like, okay, is something wrong is something like, are we just slow in this process, like what's happening, and so at the one year mark, when it hadn't happened, that's when we started some diagnostic testing, just to get some answers so that we knew what was going on, and then could make decisions from

Scott Benner 6:27
there about the time you find yourself under the bed with a wrench tightening up all the books. I don't know what's going on, but the bed is falling apart. That's the point at the point where you start thinking like, No, I don't want to have sex again.

Abby 6:45
Trust me, it becomes a job at that point where it's like, yeah, it was, it was, you know, looking back, it was a very challenging season of life. And that's to put it mildly, of course, you know, on this side of it, totally worth all of the difficulty and the, you know, the frustration, and I love that I often say the, the way that I know that part of my life is healed. And that story is because I would not go back and write that story any differently if I could. And for a long time, I didn't believe that was possible.

Scott Benner 7:20
So if I give you a magic wand, and I say, I can make your fertility, no trouble, but you lose the kids you have and you make your own babies, you wouldn't do that.

Abby 7:27
Never, not for absolutely any reason when I ever this is the what was meant to be for us.

Scott Benner 7:35
Can I ask you as an adoptive person myself? How do you talk to your children about them being adopted? Because but first My question is, is even though I imagined physically, they look much different than you? Does that really? I mean, what age does the kid even start noticing that?

Abby 7:54
Yeah, it's interesting, because, you know, that happens differently, honestly, for each kid. And we do have a unique situation where, you know, our children are domestically adopted, they're not Caucasian. So obviously, like, we don't physically have the same characteristics, but the, you know, we did have to go through a lot of kind of parenting prep, you know, to become parents on this path, and which I'm deeply grateful for, you know, you could be resentful and like, Why do I have to do all this, but in reality, what you are taught and trained. It's really, really important. So you learn how do you have these conversations with your children? When is the age that you start having conversation? And so the biggest thing for us is that our children would never ever remember having a conversation about, like, they would never be able to go back and be like, I remember the day I was told that I was adopted. I don't have that, either. Yeah. And so that's an indicator of success. And so I will tell my mom, yeah, we, yeah, I mean, we just named we gave, especially our oldest, we gave him language very, very early on of you know, who birth mom birth father birth family. We talked, we had, you know, books that normalize that, like families all like different, like, it just was a normal conversation. And so the, and we still, to this day, read a lot of books that help both of them understand, like, it's okay, we talked about having both and feelings like, you can feel both happy that this is where you are, and at the same time, deeply sad that you're not in your family of origin that you don't know who they are, you know, we can hold space for both of those things. I'm not saying we do this well, you know, all the time, but we've tried to be very intentional about making space for whatever feelings that they have. Our son is very emotionally mature for an eight and a half year old boy. very in tune with how other people feel how he's feeling. Our youngest one Because of her medical conditions processes things a little bit differently. So she's a little bit blissfully unaware, even though we've had conversations. It's but they're very different between the two of them.

Scott Benner 10:12
Sam, did you? Obviously? Well, not obviously. So your son didn't have type one when you got them? Correct. Okay. Did you get going for your second? Were you purposely looking to help a child with special needs?

Abby 10:26
No, not intentionally. So we felt very strongly that so I mean, a lot of people don't know this, when you adopt part of the paperwork, especially for international adoption is you have like a medical questionnaire that you fill out of what types of medical conditions and are comfortable parenting. And this is like this massive list, and you literally have to check off boxes of when I when I accepted child that had this not this. We, my husband felt very strongly, you know, this is not a puppy, right? Like, you're not selectively choosing things. And we also felt like if we had had children biologically, like you don't, you don't do that, right, like you, this is your child, and whenever that child has his, you manage it, in whatever situation. So, um, there might have been maybe two things that we said that we did not feel equipped. And it was more about, like how our home is set up. Like we have stairs, if you have a children that a child that's in a wheelchair, like obviously, like you're going to have to sell your home and find something that's a little bit more accommodating. So minus like very one or two conditions. We were open to anything. Um, when we got matched with our daughter, she was not known to have any special needs. We knew she was at risk for something, but in so she could get stateside and get an MRI that could not be confirmed. But the third day we were in China, she had a seizure on us. And we very quickly realized that she did have it's called sturge Weber syndrome. It's similar to epilepsy, but a little bit more complicated. And our son was with us on that trip. And at that time, he was undiagnosed type one.

Scott Benner 12:11
Okay. Can I ask an honest question? Sure. You're in China, that happens. Is there any part of you that's like, just back up and leave?

Abby 12:22
Oh, so I do not say this, like flippantly at all that experience, there was 100% trauma experience, like hands down, it was trauma experience for us. And for for both kids, it was probably, up until this point in my life, maybe the worst thing of one of the worst things that I've ever lived through was that experience. Um, I remember when we went to the emergency room, we were with our translator, the first and this is things we take for granted in the United States, like walking into an emergency room and being treated and the first er, we walked in, they were like, we can't help you because she's a child. And we only treat adults, so like you need to leave. And so we like get back in the van and like drop to another emergency room that would see children. It's utter chaos. There's no order, there's no organization. And there was a, you know, we had a CT scan, they literally Googled her syndrome, printed off the information and handed it to us and said through the translator, we've never treated a child that has this. You just need to go back to your hotel room like we cannot help you. We don't know what to tell you. And we got got back to our hotel room. This was again, we'd been there for four days, and we still had 10 days left in China before we could come home. It's a very regimented process. You don't just go at your own pace. And I remember sitting in the floor of the hotel room is she she appeared as if she'd had a stroke. I mean, that's what had happened. We later found out it something called Todd's paralysis. It's like a temporary paralysis that can happen. But we didn't know that. And I remember just this utter overwhelm of we flew over here with like a healthy child. And you know, we knew this was going to be tough, but all of a sudden, like is she going to be permanently disabled? Like is she going to recover like we have we're here restrained and it was Yeah, overwhelming would be an understatement. At least

Scott Benner 14:41
I know the intention is to adopt a baby but your entire lead up to that is not expecting anything like this. It feels like it would be like if I took you into a hospital and just said okay that person's troubles are your troubles now.

Abby 14:54
Yeah, just because you know, they say you know in adoption into unique because you You know, biological parents, the bond is instant, right? Because that child was grown, you know, in a in your womb, and when it's delivered like that bond, it's instantaneous. And in adoption, it's okay. To name that that bond isn't instantaneous and, and especially for our daughter, we, I remember we talked about this and this is true for for Shay as well, our oldest, like we had loved them from afar while we were waiting, but like when we got there and got her and in her instance, like we were complete strangers to her. Yeah, so like, she did not love as she did not even know us. And so, yeah, it's, um, love is an is a choice in that moment, right? It's not like it's not a feeling it's a decision that she is mine. And even if those like feelings, aren't they, I mean, and also she was three and a half, you know that it's, it's different than a newborn. And so, so you're very unique process. So

Scott Benner 16:02
even though it's not instantaneous, you have to make the decision in that moment, that this isn't, this isn't a transactional thing. No. I'm gonna She's mine. Yeah, this is my child. I love this child. And let's figure out what to do next.

Abby 16:17
Absolutely. I mean, you go, I mean, you do go into 100%. Like Mama Bear mode in a moment. You're so overwhelmed. But it's also like, this is my child. So now we got to get it, we got to get to work, we got to figure out

Scott Benner 16:31
so even though you haven't given birth, you have that it's so funny that you're on today. Last night, I was in the in the house with Arden and a number of her friends. And in the course of some conversation, one of her friends was saying, I don't know that they didn't think they were gonna have kids or something. And I said, I there has to be a switch somewhere on the way out when the baby comes by and like, flips it. I was like, because you'll just, you'll be surprised at what a different person you are after you're a mom, but you have the same exact experience.

Abby 17:00
Oh, without question. Now, of course, I can't. You know, I don't have children biologically. But I would argue extensively that my feelings toward my children are 1,000% the same. They are they are mine. And that those maternal instincts, they are they're just as present and known as if I had carried them. Yeah, it's, it's really amazing how that works. And now some of that takes grows, right? Because again, it's not a I didn't have them for nine months and carry them in that sense. And so

Scott Benner 17:41
I guess you're lacking all the hormone to that you have during pregnancy lately, right? Yeah. Well, I can tell you, I have two younger brothers that are biological to my, to my parents. And I never once felt like my mom treated me any differently than the way I couldn't sense it. If she was doing it. She was hiding it really well. That she wasn't. So all of this happens. Yes. And I love making this podcast, I just realized, while you were talking, I was like this podcast thing. In general, it's like maybe the greatest thing I'm ever gonna do. So at what point the shake, get type one.

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And what age

Abby 22:24
so we came home from China. That was September of 2018. So we get home and you know if I'm honest, like life isn't awesome. You know, that's kind of common. She again, she was medically complicated. You know, we work we're very pro therapy in this household. And we have a counselor that we work with. And she has sort of laughed and said that we live the trauma trifecta, which is my husband comes from a kind of a childhood that had trauma, he is exposed to a job where every third day for 24 hours. He's in trauma environment as a firefighter, and then we're raising children that come from a trauma environment. And so you know, that isn't always fun. And so that first year we were home was really, really tough. And you know, again for Shay, imagine like you get a sibling overnight, that's three and a half. And she's getting a lot of attention because she's medically needy and complex. And we were you know, ambulance at the house overnight stays in the hospital, you know, Mrs. Appointments, lots of you know stuff, and she was getting a lot of attention. And so behavioral was like he struggled in that year we were home, we all were struggling to just sort of stay afloat. So, in retrospect, I can look back and see some of his behavior issues. I do think were related to the fact that his blood sugar was probably off the charts. And what I can now see in him like when he's high, it's that like massive irritability and you know, like explosiveness, sometimes I can see that. And so I can look back in that lens. And probably guess that some of that was his blood sugar, you know, making it worse because we didn't know that that was going on. But there was just some things that started to emerge, that we started to put the pieces together that something else might be going on. And so Sophie, you came home in September of 2018. And he was diagnosed November 8 of 2019.

Scott Benner 24:45
So just did you just go into a room for a half a second and be like, Oh, come on.

Abby 24:51
No, I can tell you where I was sitting. I was and we came home from the hospital and I was sitting on the edge of the bathtub. Just weeping and feeling like, wow, like, I am not equipped for this journey. You know what I mean? Like that. And also if I'm just very honest. Like, again, from a faith perspective, like really god like, what, what else have you got for me? Because this this is a lot. I'm not sure I'm capable of walking this road. I mean, I really had that feeling.

Scott Benner 25:29
Are you even 30 years old at that point?

Abby 25:32
I was actually I'm much older than I'm right now. Almost 42. So

Scott Benner 25:39
you're like, you're 12?

Abby 25:42
I'll take that. Thank you. No, I feel like I trust me since November 8 of 2019. I feel like I've aged significantly, but no, I'll be I was, I guess, yeah, I was 40. I just turned 40 A month before when he was diagnosed.

Scott Benner 25:55
It's telling because, you know, people who are younger than that, who don't feel like they have things together, probably the back of the hair like, oh, I have to have it together. By the time I'm 40. Right. And I was already there. So I share on the podcast pretty freely that I don't think I was even like, the person I am right now as far as like, thoughtful. You've just over the last couple of years. I just feel like, I'm a guy. But like, as my I get older, my testosterone dwindles a little bit. I can focus a little more on other stuff. But it is like, you don't know what it's like to be a man. It's, it's like a med tear to see. Yeah. Yeah. You know, like, it's hard. Like, it really gets a hold of you. So

Abby 26:37
yeah, well, and it's interesting. I think that's one thing that made, you know, again, when when you when your family gets a type one diagnosis, and I do feel like, you know, the family honestly gets the diagnosis, because it has a ripple effect, as you know very well. And where, and this, again, is part of our story that we try to share openly and honestly is like, yeah, it will, it will take your marriage and test it to the limit as much as possible in terms of we already felt like we were sort of fragile. You know, we were had just walked through a lot. And then that when that diagnosis came on top of that, it really, you know, I grieved and was and felt really sad. I let myself kind of sit in that sadness. And my husband's response to that feeling instead of grief. It was rage. He was just so angry. So angry. Angry that it had happened. Angry that just angry. Yeah. 100% the only thing that felt like he could sit with was like utter rage. He was just so mad. Yeah. And that was very hard for us to walk through together of me feeling sad. And him feeling Rayji right.

Scott Benner 28:01
And like it was you're taking care of the kids. So right and like

Abby 28:05
me, me wanting to just like, not, it's so interesting, again, that mother instinct, I can almost take you back there was like a moment, he was probably been diagnosed for two weeks. And there was like this feeling that like rushed over me of, you know, Abby, get it together, like the you are his mother. And you can be sad, but you have got to fight like hell. Now. There's no other choice. Like you don't get to lay down and just give up or just feel like this is overwhelming or feel like, you know, there was just this primal urge of like, fight and do whatever you need to do to make this the best it can be that like, I could take you to the moment of like, I remember that feeling of okay, that's enough. And like, now it's time to get to work.

Scott Benner 28:58
Yeah, cuz the the, the alternative is you just lay down and die. Yes.

Abby 29:02
I mean, you could just let it slide. I've talked to other moms, you know, that have been their children have been diagnosed, since shame and just can empathize so deeply with that feeling of just wanting to, like let it swallow you up, like the grief and the sadness and the overwhelm of like, I just, I cannot do this. But as a mother, it is simply not a choice that's afforded to us. Right? You You do not you do not do that. It's your child and you'll do whatever you need to do.

Scott Benner 29:35
Right. It's a for me, it was more of a leap. I think because I'm not a mom, you know, honestly, yeah. But I was a stay at home dad. There was this time where I felt like my wife if she was with them right now, like if she was with them every day, she would know what to do. There'd be a more instinctual thing going on. And then that would mean they'd receive something that they probably need. deserve. And I have to stop acting like I'm just keeping them alive. throw myself into this, this feeling and which is why now I feel like I'm probably just too overly shy from being able to give birth myself. But I just realized that guys, like if I'm not as emotional as I need to be, and I don't overcome all the demons of how I grew up and all of my problems, then I am just going to extensively throw everything that went wrong with me on to them. Yeah, and steal this experience they would have had with my wife it financially, we could have done it the other way. Yeah. And so I was like, alright, well, I'll give over to it. But it's the hard part was that it felt like you were giving something else away. And I didn't know what that thing was the idea of what I thought my life was going to be or what I wanted it to be or something like that. Right. But once I realized that they were the most important thing, then, and I dedicated myself to it, then I didn't feel like I lost anything. Now I just feel like I'm I have a different purpose. And I'm doing a really good job at it. Yes. Interesting. You know, absolutely. Yeah. Phil. Oh, wow. See how much diabetes Yeah. I get notes from people sometimes, like I learned a lot about the world from your podcast, it's always about diabetes. And I was like,

Abby 31:18
oh, wide range of topics. You never know what you're gonna hear.

Scott Benner 31:21
Talk about Bolus is every time. That's no fun. Okay, so what was the diagnosis? Like, what what made you notice that it was happening?

Abby 31:33
Again, my husband is a firefighter. He's also an EMT. And so he has, you know, he's medically inclined, I'm not a clinician by background, but I have worked in health care for years. And I'm like, clinically, I guess, literate would be the best way to describe that.

Scott Benner 31:48
I guess then you found out he had type one diabetes when your husband ran his head through the drywall. Not quite. You just You heard him yelling, going. And then boom, but

Abby 32:00
that was not quite. So there. Again, behavioral was, we had seen some regression in Shea's behavior once Sophia came home, and we were trying to parse out like how much of this is adoption behavior, how much of this is developmentally like he's just struggling because he has a new sibling like it was, we were in this space of there's some stuff going on, he had had a history of like occasional urinary tract infections. And so we started to see some regression around wetting the bed. And this was a child that was like, the easiest kid to potty train, like had never, I mean, he just was simple. It was so easy. And then all of a sudden, it became like, this repeated thing. In full disclosure, I have a lot of mom guilt about this, like it. I was irritated and angry with him at times, because I was like, it felt in the moment like regression around attention seeking, right, I just have been trying to do something like power staff it was, and I'm like, I know you're capable. You've been capable of this for like, so many years, like what's going on? So that and then so that was one thing, one part. And then that was coupled with he is, you know, does so well at school and is a very, like rule oriented kid, meaning he like, loves his teacher doesn't get in trouble. And always, he's just that kind of kid. He always has been. And he got his card pulled in first grade for asking to go to the restroom, when they had just gone to the restroom at lunch. And I was like, Why did you need to go to the restroom? He was like, I just, I was thirsty a lot. And so you know, it was funny, but not funny. Ironic, I guess my husband that it's like, and maybe you've had people say this before, it's like, if we just didn't say the word then it just wouldn't come true. Both of us like telepathically, you're like, we need to make sure he doesn't have type one. But in but to say out loud, let's go get him screened for diabetes. We just were like, Yeah, let's just like make an appointment as a pediatrician and double check that he doesn't have a UTI that there's not something like strange going on very, under the radar. Like we're just gonna this is a it's gonna be a non issue.

Scott Benner 34:20
being super casual knowing that you're wrong.

Abby 34:24
I mean, honestly, I'm going to be I know what you mean. Um, this is part of me being naive in this I was like, you know, he's Asian. And the propensity of type one in the Asian population is a lot lower. So I was like, He's not gonna have diabetes. He's, he's native Taiwanese, like the odds of uttama nice child having type one has to be even more tiny, then like, the average, you know, population. And so in my mind, I had sort of already written it off of like, there's no way this could be it.

Scott Benner 34:58
Yeah, you didn't do the math for you. Like we flew all the way to China to do a lovely thing. And the baby had medical issues immediately. Maybe we are the people this stuff happens.

Abby 35:10
Yes, obviously not done the math.

Scott Benner 35:13
So can I stop for a second? It's super funny, because I hope people are listening who have, you know, natural children who have these problems? And they feel like, oh, it's, you know, like, we're cursed, or did this stuff always happens to us, like, you randomly took people from other places still had the same issue was

Abby 35:35
absolutely I'm still, oddly enough, Phil, you know, I've read and listened to people talk about this weird feeling of like responsibility of like, Oh, these are my genes. And like that is that I, quote unquote, cause this, you know, like that what happens is a parent, I even had those same feelings. And again, you know, genetically, I have no responsibility for either my children, they do not obviously share any of the same genes. And I still had this weird feeling when he was diagnosed of like, I'm responsible for this or like, did, what did I do here? You know what I mean, even though that made no logical sense. But that's how I just resonate with biological parents who have that feeling of Gosh, this, these are my genetics somehow that like, set this up to happen.

Scott Benner 36:22
That's not Yeah, that's not even specific to people having genetics, like their own biological children. Wow. Yeah. I don't even know why I brought up what I said, other than I think there's a lesson in the word somewhere, but I haven't parsed it out yet. I don't know what it is, but that you can let go of that guilt. Now. If you have it. It's not you didn't do anything?

Abby 36:42
Absolutely. So much.

Scott Benner 36:45
There's so many people that I talked to through the podcast, that it's become kind of obvious that a lot of people who say they have type one have sort of like Irish English backgrounds. And I know that anecdotal, but I mean, unless that's the only people are listening to the podcast, but it seems they see I'm not marketing to it, just a pasty white crowd, you know, so I don't think that's what's going on. But think about that, like, what if that's true, like, forget it? If it is, or it isn't, just make it true for a second, for the sake of argument. You didn't choose where your ancestors were from? This has nothing to do with you. And yet you'll spend time like beating yourself up over it. It's sad.

Abby 37:25
Think it's because our brain desperately wants to assign meaning to something when it's catastrophic, right? We just need we need meaning and we need a reason. And so like, our brains will do anything to try to make this make sense when like, it's never going to make sense, right? You just have to accept it. You could almost pick Yeah, so I'm sorry. Um, so yeah, so we had these, you know, symptoms, and this is how nonchalant we were sort of being about it. My husband was training for this very intense. It's called smoke diverse training. He was going out of state for this. He'd been training for like, 12 weeks crazy intense, like, it's like the Navy Seals of like firefighter training that he was like going to do. And he was leaving town that the morning of the appointment. And so he was like, Look, let me take him to his appointment, we'll do like a daddy son breakfast date at like waffle house, I'll take him to his appointment, and I'll take him back to school. And that way, I can see him before I leave for the weekend. And so I'm always the one that like, goes to the appointments and does all that. And I was like, You know what, you take it, that's fine. That's how naive I was at this is gonna be like a non issue. And, you know, he called me and they had done, you know, a finger stick and his glucose in the office was over 500. And he was like, You need to get in the car, like, you need to get here. And so, um, barely remember the drive to the pediatrician. It was about 15 minutes away. I was probably doing 100 miles an hour to get there, like threw stuff in a bag, because I knew we were going to the emergency room because that, you know, and so we got there went straight to the local children's hospital. And it was on a Friday morning when we got to the emergency room and very thankful that we did apparently intervene soon his agency at diagnosis was only 8.4. So he did not have to go. He was not in DKA. We did not have to. We didn't even get admitted. We stayed in the emergency room for about 12 hours. And then we're able well maybe not even that long. We were able to be discharged straight to the outpatient endocrinology office on campus and get all of our education and stuff and so the whole from the appointment to the time we got home that night was probably about 15 hours and then yeah, so he didn't even have to say yes no and then so he is always reminds me now of like Mom, I told you I was doing the best I could But like you didn't believe me, and I'm like I know. And that makes me a horrible mother because I did not believe you.

Scott Benner 40:05
I tried to be really honest on this podcast. And if you think that you can't feel attacked by your children, sometimes it's a completely irrational thought. But they do something sometimes. And it's hard not to think, Yo, you don't know me, but I used to be a person with dreams, who was in charge of someone's life, and I'm here doing this thing I can you run through that thing in your head, then you're like that. They didn't ask to be here. Yes. Or no, like, I'm thinking, you know,

Abby 40:31
and I say that a lot is like, you know, neither, especially in our children's situations, like, you know, they, they, this is not the life like they had no say, in any of this, right? Like, this is like, they are here in this world in this life. And, yeah, they didn't really have a

Scott Benner 40:48
choice in that being adopted. It's twofold. Really, like you really did decide to get them You didn't just be like, Hey, let's see which one comes out. You were like, I'm gonna go get somebody, you know, yes. Intentional? Not that. Not that. Not that having sex. Maybe isn't intentional, but I don't know, there's something about that, that makes it feel like, like, more so. Okay. So

Abby 41:07
and good. It's, it's interesting, because, you know, I didn't when we brought home, Sophia, I did not feel I didn't identify as like a special needs parent, or like a child, I just, you know, he was always like, my healthy 95th, percentile height, weight, you know, just, he, you know, I just didn't identify that. And then overnight, you know, I was the parent of a child with a complex medical condition that was going for testing, and it needed medication and needed monitoring. And I didn't know anything about that world. And so it literally was a flipping of the switch with her. And what I'm grateful for is that I can clearly see how hurt her joining our family was in some way equipping me for what was ahead. I just did not know that was coming. Right. So I was already in a much different place. Thanks to her. In terms of I know what I'm capable of, I know that I can manage something. So that I don't know when when we got his diagnosis. Yes. Well, obviously, like overwhelmed and all of the things that is it's a natural feeling. I also felt strangely strangely equipped, because I already had a child that had complex medical needs that I had to manage

Scott Benner 42:23
your expectations for yourself are different at that point to where you don't. It's not like, I wonder if I can do this. It's like, well, yes, I know. I can, you know,

Abby 42:31
I've proven it. Yeah. I'm capable

Scott Benner 42:33
doesn't mean you deserve more for all the, for all the religious people listening right now, I'm not saying that Abby was, like God, a baby with type one because she was ready for it. Because I, I understand the sentiment behind that. And I know when people say that to you, like, Oh, if anybody could do it, you could like that's a nice sentiment. But I mean, in real world, that's bull, you know. So

Abby 42:56
I agreed. I had a pastor one time that's used an expression that he says things say easy, but they live hard. And I feel like that's in that category. Right? Like, it's easy for someone to say that about, but like the lived experience of that is obviously a completely different

Scott Benner 43:11
story. It also paints the picture that if I'm, if I'm a screw up, then nothing bad will happen to me, which is weird. Like, like, I tell people like, look, just don't be ready for anything and nothing battle. Yeah, it'll be. Yeah, I do. I do want to, before we move on, reach back to something you said so, so long ago already, that I let get past is that your life just worked up until then. You had something you wanted to do it? You did it, it happened. And I think that is so common for people like, you know, I mean, I can be honest, I guess you you grew up one of two ways. I can tell you that. Nothing in my life happened easily. But I grew up that way. But for somebody who did, like I watched my kids, like my son's athletic, he's handsome, he's strong. He goes to do something he does it, he decides when he's 2121, I might want to try to pitch and goes out and like throws a ball 91 and a half miles an hour, the first time he's like, Oh, maybe I could just get drafted and do this. I was like, you know, like, like that stuff. And then out of nowhere, he got Hashimotos. And I watched it, like, crushed him. Not for long. He pulled himself together, but it crushed him because I kept thinking, nothing's ever really gone wrong. Or, you know, like he doesn't have any perspective for something not working out the way he wants it to. Yes. And I keep wondering if maybe when he's older, hopefully I can try to stay alive long enough. I wonder if he'll look back and think like, Thank thank, thankfully, something happened. That gave me some better perspective. Because when stuff goes too well for you, you really don't have any real world perspective. And

Abby 44:48
yeah, grit is not developed, right? In that sense whenever it's only easy and not that you you know, want to sign up for like tough experiences in life. But I think, again, that's why on this side of it I couldn't say I'm grateful that it happened the way that it did for us because I would not be the person. I mean, I know that's sort of cheesy and people use that expression in different ways. But like, honestly, I wouldn't be the person that I am. If that had not happened, and it shifted me and shaped me in a way that like, it changed me for the better, you know, even though it was not something that I would have willingly, like signed up to experience.

Scott Benner 45:25
No, I I understand that sentiment, I completely agree. Okay, so you're home from the hospital? Yes. It's only a few years ago. Do you start with like Bucky? Or do they give you the start out?

Abby 45:38
So we started out on asking like, what do we come home from the hospital

Scott Benner 45:43
insulin needle? Yeah. So we came

Abby 45:47
home on nollag. Obviously, injections and on Oh, my goodness, I just went blank on his long acting insulin. No, the other one. Just see, but thank you, my brain. It's been so long since I've had to think of it because he's on a pump now. And so like, I haven't hit? Yeah, so we came home on Tuesday, but and no vlog. And yeah, you know, the first that first weekend was horrible, like, a lot of parents, like, you know, he cried. And, you know, he also was a constant snacker. And he loved second portions of everything. And, you know, for him to realize that this can't be, you know, that that world is over, at least for now. And we have to figure out how to do this. And that weekend was horrible, you know, for him and just grieving, watching him grieve the loss of what he knew prior, you know, I always have deep empathy for kids that are diagnosed, even in their, like teen years, because it's like, you clearly know what life was like before this. And even for him at, you know, seven. He knew what life was like prior to this. And so yeah, so we were on that combination from diagnosis in November, and because of the podcasts, and because I'm an avid reader, and I, like will devour content, if given the opportunity. I always laugh and say, I just proceeded to get myself a master's degree and all things like diabetes related and studied and proved to our endo that we were not a typical family in the sense that we could handle, we could handle the data of having a depth Dexcom it was not going to overwhelm me. You know, we had that whole conversation of, if we put you on one too early, it's going to overwhelm you because there's so much data to look at. And I just made the argument that the lack of that data was giving me anxiety, like I wanted to know, honestly, he got the Dexcom, the week before Thanksgiving. So again, we we got it pretty quick. Yeah, that was the first time I felt like I could breathe was just when we got that I felt like, Okay, I feel like I can breathe just a little bit in terms of sleeping, which still doesn't, you know, isn't super great. But it was better than and then started to advocate pretty heavily that we wanted a pump. But we wanted to make sure that we were letting Shea drive that conversation and not us. And I actually think it was maybe one of our diabetes education classes where one of the nurses had said, like, parents push often for a pump very quickly, but just be mindful, it isn't on your body. And so like, you do need to make sure that it's what your child wants, and that you're not the one trying to push for that. And so I I did try to take that to heart and make sure I was we were giving him voice in that. And we actually went to a like a regional type one event in January of that year. And he was in like a kid's class that day while the parents were in sessions. And it was it was a JDRF event. And we got in the car that day to come home and he was like, Mom, they all had pumps. I want to pump like, you know, that was his first visual exposure to other kids that had it and he was like, Yeah, that's what I want. Yeah,

Scott Benner 49:16
no one had a pocket full of needles like me. Yeah.

Abby 49:19
So once he was able to verbalize like, Yes, I know, I want that. Then I started full force. Like we're doing this like as fast as possible. And so he transitioned to a pump in March of 2020. Literally, he was on spring break, and never went back to school of course because of COVID. And so when on the on the pod and yeah, we've been on that ever since.

Scott Benner 49:47
Well, I think when Omnipod five happens your overnights might get a little better.

Abby 49:51
Oh, I just Yeah, I was reading an article just this week to my husband and we were just like, Well, life is gonna be awesome. Very soon.

Scott Benner 50:00
had COVID not happen? I think it would be out already. Yeah. So

Abby 50:04
we were willing, he's been very vocal again, he loves his AMI pod even, like, we let him of course he came home with, you know, a couple different options and tried them but for him the the, because of the fact that his to Bliss, I mean, he just he was like there is no other option for me. He was adamant that that's what he wanted. And it's been, like, wonderful for him and life giving in so many ways.

Scott Benner 50:33
How did you find the podcast?

Abby 50:35
So I have a, I grew up in a small town and the neighboring county, like we were very small town as well. And, you know, we all you know, everybody close by you and that sort of thing. And so there was another mom that she went to like a local high school that was like in the county over from mine. And we've always known each other and her daughter has type one and I believe the Facebook post I made of when we came home the next day, it was a picture of him in the ER and asking, you know, letting everybody know what was going on. I can go back and look, I actually think she commented in that thread tagged you or the podcast when you you commented back. Oh, did I? And yes. Remember, and yeah, so that's he was the weekend we were diagnosed. And so

Scott Benner 51:27
he found it right away. Like listening. And

Abby 51:31
yes, I remember, binging multiple is pre pro tips. Like, that wasn't a thing. Really. I mean, like you hadn't organized it in that sense. And so I just remember, like binging I think in that Facebook post, I asked, Where should I start? And you gave me some suggestions in that thread of like, here's a few episodes to get you started. And yeah, so thankfully, I didn't go too long at all, before I found you as a resource.

Scott Benner 51:59
That's cool. It's hard for me to remember the podcast the way I intended it in the beginning, because it was so like loosely like I'm like, let me just get started. And like, I'll tell the story. And we'll see where it leads to. It's fascinating, like I'm really, really touched by the fact that it could be valuable to anybody.

Abby 52:19
Well, you know, and really neat story. I've used it so often. I mean, even in my current full time job, I work remotely that was pre COVID. It's a virtual organization for the most part, and you know, a person on a different team than mine. Her daughter was diagnosed just a few months ago, and even just this past week, she had DM to me and slack and said, My daughter, we're struggling, she's still on in VR. She's sneaking food, I don't know what I'm going to do. And immediately I was able to go and like you had an episode on that. And I was like, Damn that to her and said, like, Have you listened to this? And she's like a habit. So thank you. So it's just always nice. I feel like when somebody has a question, there's usually always an episode that matches

Scott Benner 53:03
I'm starting to feel good. That that's true. Because I'm starting to find myself seeing people's questions and be like, Oh, I can just answer with an episode. Like, that's really cool. Like, what you get out of longevity, too. Yes, it's been around for a while. I'm thrilled that it. I didn't ask you, but it has been helpful for

Abby 53:19
you. Oh, no, it's been immensely helpful in so many ways. Um, yeah, it was. It gave me language that I didn't know that I needed. And I really do feel like it helped me advocate in a different way, I felt more confident in my ability to advocate for even for a pump. I just felt like I had the language to just know what I wanted to say that the whole thing about, I know, it's a tagline now, but like being bold with insulin, I'm so thankful that I listened to that early on. So that that feeling of being afraid of giving too much like that just never I didn't sit in that space because I had listened to that episode. So early on maybe in the first week we were diagnosed that that didn't have time to take root where I had that fear. And so I don't know, it's just always it started me off on a foundation that I felt like made. Yeah, it made our transition to this world. A lot less lonely. For sure.

Scott Benner 54:20
That's excellent. I have to say that. The idea of I know, I've seen people, like, you know, people who are like maybe like more low carb, they'll be like, That's the bold with insulin guy. And I want them to know, like, I didn't come up with that. Like, I know, it's the title of the episode. But if you listen enough, you realize that while I'm editing, I just go Oh, those are words that sound like a title. And I put them on. I don't really think too deeply. So it was maybe two years after that episode came out that I started seeing people use the phrase on social media. And I remember thinking, that has to be me, because I've never I heard anyone say that before, so much so that I was like, I think that's an episode title. Like, I wasn't really even certain, you know. And then I went back and it was I started asking people questions like, yeah, there's that episode that teaches you to be bold with it. And I was like, Oh, is that what it does? Like, that wasn't like I was just telling a story that day. You know, I think that was just that's a one on one episode. I'm just talking into the microphone. Yeah. And I think back and I'm like, I wonder what would have happened if I picked three different words out? That that would have been it would have been it, you know, Would you've been running around saying a different thing? Or? Yeah, it's, it's a, it's kind of weird that that's the case. And I just spoke with them. I've spoken recently with two different hospitals. And I should knock on some blood because I really want to do this. But I think I might be invited to teach their staff how to talk to people about diabetes, that would be here. And that is just comes from having all these conversations with. Yeah, yes. And you guys are all like, sort of like, my knowledge is now an amalgam of all of your experiences. Yeah, it's weird. I feel like I'm, I don't know. Like, I feel like I'm like, I'm like, Siri.

Abby 56:11
So good. So good analogy I like,

Scott Benner 56:14
and I love like getting better and better. I got a thank you from a little kid today, like a little voice note. That was like, it just is like this little six year old kid. And he's like, Thanks for teaching my mom all this stuff. And I sent it to Jenny. And I said, I'm better at this because of you. And, and so I think it's just starting to be that thing where it's just we're feeding ourselves and each other. And it's a very, very cool, so I get a little misty when I talk about and usually recording, so it's easier to get away with. But your story is messed up.

Abby 56:49
Oh, I say like, when I we go places like we just went to family camp for our second year in a row. And I was like, meeting with the counselors that we're going to be working with him. And I'm like, like our family. We're a lot. We're very complicated. So just buckle up. Let me explain all because a lot going on.

Scott Benner 57:07
Has anything helped you? And your husband like you were sad. He was mad? Are you guys in those places? Still? And if not, what do you think helped?

Abby 57:18
Yeah, oh, I mean, a lot of therapy, honestly, a lot of support. I mean, really, honestly, therapy has helped immensely actually talking about. I mean, we were pro therapy before this, but I think like specifically being able to process that process that and how each one of us were feeling very different and having very different reactions to that. And especially for him helping him come to terms with like, what caused that in him. And it was like the lack of control and as a weird and maybe you can relate to this as a dad also this like, we talked about, like mom instincts with this, like, primal feeling as a dad that my job is to protect and feeling like for whatever weird reason I didn't. And this even though that's illogical, right? Like, that's not possible, but him feeling like this has happened. And like, again, this, I didn't do my job as a dad, like I don't I feel like I messed up somehow. And which was not obviously a healthy response, which he had to unpack and figuring out, but I think it was I read something not too long ago, and she used the analogy of scaffolding on a cathedral and how, you know, scaffolding is so ugly. And it may it takes a building that's, you know, beautiful otherwise, and like, it just makes it look so ugly, but it's necessary to restore and maintain something that's precious. And, you know, I think I've said we have lived these last few years with a lot of scaffolding up. Yeah, it's been ugly, but it's also been very necessary to preserve what's precious, you know, underneath all that. And so we are slowly like those pieces of scaffolding are being like removed. But it's been an ugly process. You know, it's not been always nice and neat, but it's worth it. It's just it takes time. Right healing around that sort of stuff just is a long process. But we're it's a much better place and where we were, it's just it took a lot to get us where we are.

Scott Benner 59:32
I have two episodes coming up soon that will be out for months by the time yours goes up. There are two different therapists and they're both about relationships and yeah, around type one because it's so difficult and I relate to what you're saying because I am inherently inside of me. I want to fix problems. Yes. And then just not just big ideas. Like if you were to come to me and tell me about your De, and it sounded like something inside of it wasn't going right. There was a time in my life where I wouldn't have been able, I wouldn't have even been able to hear your story, I would have already been constructing a way to fix the problem that you just, I wasn't even listening to the people who were talking to me. I was like, How do I fix this for them? Yes. And it's obvious, like if you listen, it's obvious. I'm adopted for one, right? My parents, even my adoptive parents are divorced. And when my mom when my mom dad broke up, I became kind of the de facto parent of my brothers. Like, I've been fixing people's problems since I was little. Yeah, yeah. You know, and now I get into a situation where every problem doesn't need to be fixed. Yeah, I can't stop myself. Like, I'm a fireman who sees a fire everywhere. Even. Yes,

Abby 1:00:46
exactly. Yeah, that was like, he was used to being that guy, right? Like, I'm on scene, I'm in control. Like, we're gonna get this figured out. And then, and then it like, struck really close to home of just being reminded like, I am not in control. I think the fragility of life gets very thrown in your face, right? Instant of like, okay, there are some things that I this is real, like, I can't prevent things from happening, you know, they're gonna deal with hardships, and I cannot take away from them. And so what, how am I gonna sit with that uncomfortable feeling? You know, it's something I can't fix.

Scott Benner 1:01:26
You also get a false sense that you're actually fixing something like even even in the firemen analogy, you go, you put the fire out, you leave. And you're like, we did it. Except they still don't have a place to live, their cat's dead. They don't have clothing. They look like you didn't really fix the whole thing. You put the fire out, right? And so even when your kids are asking you stuff, and you're like, Well, you know, I don't know, XYZ do this, that fixes that problem. I still wasn't listening to all of the other emotional entanglements that were going on. I was like, Well, I see a tangible problem in front of me, I know how to fix it. Which is why you'll hear me like joke and not joke on the podcast. And I say like, if the zombies come you come find me. Because I'm gonna be at the end, right? But it doesn't mean I'm going to be alive and happy. I'm just gonna be alive, right? I'll be, it's not like, um, it's not like, I'm going to be able to build a utopia somewhere. I'm just not gonna let the monster get me. Yes. Yeah, kind of how I feel. Let me sense anyway, I imagine your husband probably had similar feelings. It's cool that you did that. Did you have to cajole him? Or did he go willingly? And what way to therapy?

Abby 1:02:34
Oh, no. Well, I think because we had already we had such a foundation of like, being a pro therapy family, because we needed to be even before you know, he was even before she came home. We've always been a family when you when your kiddos are adopted. You know, if you're if you're wise, you don't wait for problems to emerge. Like you're you try to be in front of a lot of that. And so a lot of what we've done was probably what I would call proactive therapy. And and we were kind of trying to get in front of things have good conversations about stuff. But this No, he didn't fight it. Because he also knew that the end result of if we didn't process it, or like, you know, walk that path to healing was not going to end well. Like he knew. So yeah, he went, it took us a little bit to find the right person. We struggled a little bit with that, but it's been one of the healthiest things and I think honestly should be required for your link every newly diagnosed family, I think you should get you know, and Dexcom and a therapist.

Scott Benner 1:03:42
I just said this somewhere else, but I'll put it here too. COVID did one good thing. If it did anything. His mental health has gone online in a big way. And yes, it made it much more accessible for Pete green. So I think that's great. Yeah, dude, you were amazing. I didn't know you were great. I struggled to get you. So what happened that I moved you first because of my trip? Oh,

Abby 1:04:07
yes. So I think so. We had booked it. And then you emailed and needed to move it. And I think I must have not moved it on my calendar. I left the original appointment. So I thought it was yesterday. Yeah. And then when the reminder came out from Squarespace. It was like it's today. And I was like that I'm like, I have a team meeting at that time slot that was like we had a training and it was like non negotiable. I had to attend. I was like, I'm not going to be able to do it. And so yeah, I'm glad that

Scott Benner 1:04:35
thank you. I can tell you that. I can tell what you do for a living because you are You were so good at laying this out. Oh, yay. I've never not I don't think I've spoken this little in a long time.

Abby 1:04:50
I'm a talker too. So I'm from the south. We thought I don't

Scott Benner 1:04:55
know. But had you gone in a way that I would have been like, Oh, this is blowing the flow of this. I would have Like redirect, did you okay, but I was like, wow, she's doing so good. Like, there was a moment. I was like, I wonder if I could leave? Do I mean to be here? She's doing such a good job, I could probably go make a sandwich or something and come back and just be like, you know?

Abby 1:05:17
That was a compliment. I hope it wasn't that I was taught. No,

Scott Benner 1:05:20
no, absolutely compliment. You. There are Listen, you guys hear every episode that I record? I think of only maybe destroyed two or three of them for reasons of the people that recorded asked, you know, and they've always been reasonable. I've always thought at the same time, you know, you're right, let's be done with this one. But there are some people who are more natural at getting their story out. There are some people who feel the flow of it, there's some people have it planned out in their head, and that stifles them. And there's some people that have it planned out in their head, and that helps them. Yeah, I think about like little Sophia from Russia. And if you heard hers, right, at one point, I tried to move on, and she was sort of like, huh, we're not done here yet. We need to go through this cart. Alright, geez. You know, like, but that's But everybody's different. But everyone's great in their own way. Yeah. Just you were. You clearly talk to people and explain things to them. Yeah. In Your Life. Yeah. So yeah, really good.

Abby 1:06:20
Um, absolutely. So thank you. I'm, like, I really am grateful for for I mean, I know people say that to you. And I know, you probably. I don't think I mean, you don't probably get tired of hearing it. But in, honestly, like, you were a lifeboat to our family when we like desperately needed it. So now I'm gonna cry. Okay. Thank you very much. I really appreciate people don't understand this world. And you feel so lonely when you're first diagnosed, and there was something so comforting about like, I just didn't feel alone, because I could listen in it. I mean, it just, and it also an action person, I just felt like there was this like, again, when that primal instinct of like, get to work, I felt like it gave me something tangible to do, like I can do, like, I can consume his content, and I can do something with it. And I felt like it gave me empowerment of like, I don't have to just sit here and wallow and feel like it because this is bad. Like, I can do something about this. And so the actionable part of it, I've always appreciated.

Scott Benner 1:07:39
No, that's cool, because that's one of the things I did on purpose. So is the idea of boiling the concepts down that they were so small and understandable that you could actually be like, I think I could try this. Yes, you know, like, instead of just feeling because you have to get over to the idea that everyone newly diagnosed, or even if you're struggling, you're overwhelmed. If you knew what to do, you'd be doing it, of course, right? It's not happening. If you're a parent, you've got the anxiety and the stress if you're an adult with type one, or were otherwise your blood sugars are bouncing all over the place. It's difficult to think. And now people come in with these overly complicated technical explanations with a bunch of words you don't understand. And after they're done, you're like, I don't know what I'm supposed to do. What am I supposed to do with that? Right? So I thought, why don't I just explain to people what's in my head? Yeah, you know, which is just, like I've said before, like, I don't have the ability to break that stuff down, either. That's why I made the podcast because yeah, I mean, that's why the Podcast, the podcast exists, because I didn't want to count carbs. That's one reason, you know, I needed a different way to do it. I've come to realize now over time, in my heart, it's a it's a time capsule for Arden a little bit, like, you know, like I wanted to be able to, like understand diabetes, like even if like she wakes up when she's 30. And she's like, let me figure out what this guy was talking about. You know what I mean? Like, it'll all be there for for her. I love that man. And it teaches me, like, while I go, I have a lot of ideas while I'm talking to people or moments like even like when the podcast is kind of like delved into, like talking to therapists, or like that kind of thing. It's all really important. And we say it's important, but then no one talks about it. Yeah. And I think that self help, which it ends up being is far less about directions. And more about like, like visceral understanding. Yes, the shared experience. Yeah, you people give people bullet points and expect them to fix their life with it.

Abby 1:09:39
It's so true. I also think there's something again, this is my world is there is something like, deeply sacred about holding someone's story. And like that's what you do is like you, you, you, people come on here and like, You are the holder of that space and like that, that is Is there is something in that that's really, really special and unique. It matters, you know, people being able to tell their story and that sense and having somebody hold space for that, like, it is important. It really is someone

Scott Benner 1:10:14
has to do that. It's, and it can't just be anyone. And I don't mean this as a pat on my back, but like he can't just it has to be somebody who holds your attention. Whose voice makes you feel comfortable, whose Guess whose cadence makes you feel like, like, I remember watching Dave Chappelle receive, like the Kennedy Center Honors. And he said that when he was growing up his mom, um, I don't know all the details. So I'm gonna sound like an idiot for a second. But there's this this older idea of that there's a storyteller in the tribe. And that, and that she saw him that way. And and I was like, oh, that's super interesting. And, and I don't see this is any different than that? Yes. Right. So it's very specific. It's very niche. It's diabetes. Yeah. Almost more specifically, type one, although I do think a lot of the management stuff we talk about. Even the ideas if not the insulin fits with type two. Yeah, has application. But I just, I think what you said is really, like insightful. And I appreciate it. Because it's so easy to look at this and be like, Oh, it's a podcast. But it's, it's everybody from all over the world. Yeah, getting to add into the story of what it's like to live with type one place where it's actually consumable, not like, oh, I ran into an article once, but then I didn't see the next one about the next person that this is the hub. It happens here. Yeah. And so that is magical. Yeah. And, and it's, it's perpetuated by the people who listen, because you don't grow a podcast on purpose. You don't buy ads. Yeah. talk people into listening to it. It literally has to be your friend telling you, yeah, and you doing this and people have

Abby 1:11:54
to be organic. It just doesn't

Scott Benner 1:11:57
work. Well, first, let's thank Abby for coming on the show and telling us that amazing story. Thank you, Abby. I want to remind you that it's diabetes Awareness month in November and National Adoption Awareness Month. Thanks so much to Dexcom makers, the Dexcom G six continuous glucose monitor for sponsoring this episode of The Juicebox Podcast. And thanks again to Omni pod head over to their website and find out about that on the pod dash. See if you're eligible for the free 30 day trial. That's it on the pod.com forward slash juice box. And of course, the Dexcom address is dexcom.com forward slash juice box. There are links to these and all the sponsors in the show notes of your podcast player at juicebox podcast.com.

Couple of little things at the end here. First of all, thank you very much for listening to the show and for supporting the Juicebox Podcast by sharing it with other people. I really appreciate that. What else Oh, T one D exchange.org. Forward slash juicebox. US resident has type one diabetes. US resident is the caregiver of someone with type one in less than 10 minutes, you can fill out a survey that will help other people with type one diabetes, and it will help the podcast. If you're enjoying the podcast, you should check out the Facebook group Juicebox Podcast type one diabetes, it's a private group so you can go in there and really talk about type one. There are over 17,000 members in that group who understand life with type one diabetes, the group is absolutely free. should go check it out.

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