Scott Benner 12/20/21 Scott Benner 12/20/21

#597 Does Jenny Burnout?

Scott and Jenny Smith, CDE discuss burnout, restarting T1 management, the past year of the podcast and whats to come.

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

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 597 of the Juicebox Podcast.

We're just gonna have a few more episodes in 2021. And I thought we'd go out on a high note with Jenny Smith from the defining diabetes and diabetes pro tip episodes. You love Jenny, you know, Jenny, and today you're going to talk to Jenny. Like she's just a regular guest. Yeah, sort of. I'm going to ask Jenny, a question about diabetes burnout. And then we're gonna chat about what we've done this year and things we have planned for next year, etc, etc. So on and so forth. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always, also consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you find yourself with a few minutes, and you're on your sofa with your phone, go to T one D exchange.org. Forward slash juicebox. They're looking for US residents who have type one diabetes, or who are the caregiver of someone with type one to answer a few questions and a quick survey that benefits people living with type one diabetes, and the Juicebox Podcast, T one D exchange.org. Forward slash juicebox. This episode of The Juicebox Podcast is sponsored by Omni pod, head over to Omni pod.com Ford slash juice box to get started, learn more or find out if you're eligible for a free 30 day trial of the Omni pod dash. This episode is also sponsored by touched by type one, to learn more about them go to touched by type one.org or find them on Facebook and Instagram. All right. So here's the good news. It's the end of the year. I'm not gonna ask you anything, you're not gonna need to know anything technical. I'm just, we're just gonna talk again, because we haven't talked for a while like people on on the podcast. So yay, I do have a little bit of a, an angle. So okay, we'll see how it goes.

Jennifer Smith, CDE 2:23
There's always an angle there's got to be.

Scott Benner 2:27
So it's got to be about something. But before we start on that, I just wanted to ask you. I wanted I guess I kind of wanted to get your opinion about how all this is going like you and I have been at this for a while now. Like I think we started making the protests in 2019. Maybe that sound right? Yeah, that

Jennifer Smith, CDE 2:46
sounds about right, I think Yeah.

Scott Benner 2:48
And, you know, for people who, like, are just jumping in and listening. I think it's about time that I explained again, that just so people understand like, Jenny doesn't work for me. Like she's not. So So I want to give people the background for a second because there are a lot of new listeners since 2019. I don't know how long ago now maybe in the first year of the podcast in 2015. Jenny just came on as a guest. And I remember talking to her and having a really good time. And I left the the podcast episode feeling like Wow, I like that person. And I really agree on a lot of stuff. Stuff that I don't normally hear people talking about around diabetes,

Jennifer Smith, CDE 3:33
right, I believe it was it was about a one C, if I remember correctly. It was about a one C and the grander picture of a one C and the other things to consider. And even things like what's now known well, but things like time and range and standard deviation and all of those kinds of things. Right. So yeah, that was a long time ago, gosh, trying

Scott Benner 3:58
to see when it was see if I can pull it up. But I always do this, I always searched the wrong. There's such an easier way for me to do this. And I always do it the hard way for some reason. And the other thing about that episode is that while we were talking, I was saying things, you know, that I talked about and you weren't treating me like I was a lunatic. You were like, No, that makes sense. And you know, even though I was speaking about it probably differently than other people do. And we're kind of like, I don't know, blue collar simple terms or stuff like that. Like, I never got this feeling back from you. Like you were like, Oh God, what is he doing? You know, like you were like, No, yeah, right. It was all about a one see with Jenny Smith CDE it was actually April 6 2017. Okay, was that maybe yes.

Jennifer Smith, CDE 4:43
That would have been right because it if I remember, even remember the office, like I remember sitting in that office space, which it was a different house than we have now. And our little boy Who is he'll be five in January this year was just he had just been born.

Scott Benner 5:06
Well, both of our memories are failing us, because that was the second time you were on. Really? Episode 105. That episode in 2017 was the second time you're on the time I'm talking about with episode 37. November 10 2015. She really just a guest on the show the first time. And then I asked you back to like it two years later, because

Jennifer Smith, CDE 5:32
that was so memorable. Oh, no,

Scott Benner 5:34
no, no, you are you stuck in my head the whole time. But I kept like thinking like, I can't have the same people on over and over again. But it just seems so important that when I had an angle, I was like, let me bring Johnny back to talk about a one C, then after that, that's when apparently it takes me two years to do everything. Because for that entire like, next two years, I kept thinking, Where does Jenny fit? How can I get her to come back on it, you know, and keeping in mind too, that it's not your job, and I'm not paying you to do it. And so you can't just you don't want to intrude on people's lives. And then I sent you a note. And I said that I thought there was a collection of ideas within the podcast. And I want to talk about them singularly. And I think I sent over like the seven like, like broad topics that I wanted to cover. And I knew that you were the right person. Because you when you email me back, you're like, actually, there's 10. And I was like, oh.

Jennifer Smith, CDE 6:36
And I put them in order. Like we have to start here and then go here and then go here. And

Scott Benner 6:41
then you reordered them, which is something that I think we all know from listening to this podcast that I never would have done, I would have been like, look, pick through them, like don't bother. Which doesn't make a lot of sense. And then we kind of set off on making those pro tips. And I mean, I guess we both thought they were gonna be 10 long. And I we got them done pretty quickly. Jenny was a trooper like we recorded a number of hours a lot over in a short amount of time. But and I mentioned this all the time. We never spoke about it prior. So every pro tip episode you hear is just me going like Hey, Jenny, let's talk about Pre-Bolus thing today. And this is our topic, kind of just focusing for a second and then doing it. Literally no first sentence, no bigger idea about what we were going to do. And I'm very happy with them. I think they turned out really well. I also have to say that at this point. There are way more than 10.

Jennifer Smith, CDE 7:43
Because just in the pro tips. Yeah, I'm going

Scott Benner 7:45
to look to see how many. Well, you've just done. We just recorded two more that the people two more will hear pretty soon after this comes out. But 210 is newly diagnosed or starting over 211 is all about MDI 212 is all about insulin 217 Pre-Bolus 218 Basal 219 pumping. Oh my gosh. 1234567. All right, hold on J 123456. All right, I'm up to six when I do pumping, you count on your fingers the next seven okay. 220 fours mastering CGM to 25 is bumping nudge to 26 is perfect Bolus to 2231 is variables. To 37 is setting Basal insulin to 56 is exercise. 263 is fat and protein 287 is illness injury and surgery 301 is glucagon and low Beegees. Now this isn't a 2020. So that's 15 Okay. 307 is emergency room polar protocols. 311 is long term health. 350 is bumping nudge to 364 is pregnancy 371 is explaining type one. 391 is glycemic index and load 449 is postpartum and 470. is weight loss. How many is that? 23. Okay, and that took us into April of 2021. That's the last time we put up a pro tip was in April this year. Okay.

Jennifer Smith, CDE 9:22
I know we talk and do things all the time. So we must have been doing a variable since then. Yes.

Scott Benner 9:28
Yeah, we smoke all the time with the variables this year. And then what did we just record?

Jennifer Smith, CDE 9:33
We just did? Hormones, hormones. And we did. Did we do we did alcohol to

Scott Benner 9:40
menopause? No, wait. Menopause wasn't a protip alcohol. Maybe alcohol was

Jennifer Smith, CDE 9:45
a longer variable. I know we did alcohol as a separate longer, but I don't know if it was a variable or if it was a pro tip. I think it was a variable.

Scott Benner 9:54
So this should show everyone that you and I talk a lot more than they. So we don't speak Every day, we speak in like bunches, like an hour to hear an hour or two there. But you guys hear Jenny almost every week on the show. But Jenny and I don't speak every week. So I don't know why that's important. I just think people should understand that. Cool. Yeah. So anyway, those pro tip episodes are, I mean, I'm super proud of them, I think you could take them and listen and really change the way you're managing your diabetes pretty easily. I think they're cool, because you can listen to them at your own pace. It's not a class, you don't have to pay for them. You know,

Jennifer Smith, CDE 10:36
I think the other thing that's different about them, and I think it goes along with, whether it's a pro tip episode, or any other of the kind of episodes that we've put together together, is that it's not a cut and dry rip off sheet that just says, Here are all of the numbered steps to do something. Right. It's also we bring in, in a conversation way we bring in how did we do this ourselves? How, what kind of example Do we have to how this actually works in real life? And from the standpoint of just personal life with diabetes? You know, if I was somebody who I wasn't today, with the education piece that I have, I would listen to that in a much easier learning way. Then reading something that, you know, I've gotten as like a rip off document of, well, these are all the testing steps just go through them. And, you know, so personality, I think, brings a lot to people's ability to apply. Because the casual nature of discussion kind of makes it easier to make sense. Yeah.

Scott Benner 11:59
I think in a weird way, we've kind of combined storytelling with diabetes management. And yeah, that is how people's minds tend to work. So I'm super proud of them. I just looked the other one that we recorded recently. That's not up yet. his honeymoon. Honeymoon. That's

Jennifer Smith, CDE 12:13
right. I knew there was another one. And the

Scott Benner 12:15
reason that they pro tip episodes can keep growing, is because the Facebook page for the podcast is so big at this point, that it is a legitimate sample size of what people go through or think about. And so I kind of get to stand back a little bit and watch and when you see things happening over and over again, you say okay, this is a real need for people. Like it's not just it's not just a an outlying concern that a few people have, like, there needs to be a pro tip about honeymoon. It's, you know, you know, it feels super simple sometimes to Jenny and I but you know, like, sometimes we'll start I'll be like honeymooning. Yeah, just stay flexible. And eventually, the pancreas will stop working. And then you'll find level and you're done. But that's not really very helpful. Yeah, so we have these bigger conversations. And, but we never get to, we very infrequently talk to you like you're a person, like I think we did at the end of last year, right? Where we just one person I promise, Jenny's like a real person. So I wanted to ask you a question. And we're gonna get a little technical for a second, but a little personal. And then I'd like to kind of, well, you'll see where I'm going. So here's my question. You've had diabetes for Let me test myself. 33 years. Yeah, good job. Thank you. I don't know when you were diagnosed, but I feel like in my heart, you were like, eight 911? Like in that range?

Jennifer Smith, CDE 13:39
Yeah, I was I had just turned 13.

Scott Benner 13:42
Okay. And I as I started saying, eight or nine, I started adding that the 33 And I'm like, Jenny's not over 40 I was like, so that's not right. Like, like, how old are you?

Jennifer Smith, CDE 13:51
I'm over 40

Scott Benner 13:53
My heart Jenny or not?

Jennifer Smith, CDE 13:57
Not in my brain. I'm not either. It's it. I know. It's kind of like, I was looking at my number and think I just, I, I guess I have this eternal feeling of being like 32 I don't know why that number. But like, I I have a visual now being you know, over 40 that, like the 20s are a lot of growing and changing and learning and finding like, your place, right? And then I feel like the 30s are like growing in that like, you feel a lot more stable or many people do I did. You found like kind of this like, friend group. You're on this path kind of thing. And then like bolder than that, you just keep developing. On top of that. You might make some major changes, but you have a lot more. You've got a lot more hindsight to make better decisions in those changes than you did when you were like 26

Scott Benner 14:58
I don't think if the internet was only full of people in their 40s There'd be much less arguing, like, for some reason, because you just be like, Oh, no, I see where this is going like this. We don't need to talk about like this, we can be kind over here, you know, or whatever.

Jennifer Smith, CDE 15:12
As long as they're not politician, yeah.

Scott Benner 15:15
I so I agree with you, I, I felt the very same way about like you're kind of building on yourself through life. But the reason I asked the one to give context to how old you are, and how long you've had diabetes, because you started out, you know, as a child, you know, taking regular an MPH, right? So and yeah, I

Jennifer Smith, CDE 15:34
didn't I did regular and then the same as NPH. It used to be called L or lenti. And it was made by Lilly, of which it Yeah, it's now enter MPH is the only what was called an intermediate acting insulin on the market. You cloudy had to roll it and mix it.

Scott Benner 15:51
I can remember my friend Mike rolling his insulin. Yes, yeah. But But you've lived through pretty much every modern change. Yeah, variation of diabetes management. Mm hmm. And I guess I'm wondering because, you know, well, because of the, of what we do here together, it could be easy for people listening to see us kind of two dimensionally, right. Like, you know, I think people think my daughter's blood sugar doesn't go over 85. And that's not true. And you have to tell people that but but the one thing I want to know is, is it Have you ever experienced what people classically call burnout?

If you're looking for a diabetes organization to get behind, or you just want to see some great things being done for people with type one diabetes, head to touched by type one.org. There also over there on the Instagram, and the Facebook machine, you should find them touched by type one. If you're ready to ditch the daily injections, or send your old pumper packin, it may be time to try the Omni pod to Bliss wireless continuous insulin management system all that means pump that doesn't have any tubing. Why don't you head over to Omni pod.com Ford slash juice box and find out where your eligibility lies. You know, it's possible you may be I don't want to use eligibles wise, but just let me say it again. So we make three times you may be eligible for a free 30 day trial of the Omni pod dash 30 days of an insulin pump. The Omni pod for free, almost feels like a gift. But it's not. It's just it's just how things work over there at Omni pod.com forward slash juice box. You know, you can also ask for a free demo pod to be sent to your home. You can see a picture of me pretty soon at that link, which will probably be frightening for you. So when you click on it, you hold your hand up, like by the screen. So when you see the picture, you just it's not like that yet, but pretty soon apparently they're gonna know how they think you guys like me. So there's gonna be a picture there soon. So get ready for that. Omni pod.com forward slash juicebox. Seriously, go find out if you're eligible for a free 30 day trial of the Omni pod Dash. And don't forget to about the Omni pod promise. The Omni pod promise is simple. If you're waiting for the next big thing from Omni pod, and that's why you're not upgrading now to dash or starting with Omni pod or something like that. Because you like Scott, I'm going to wait for the next big thing. You don't have to the Omni pod promise says this. There is no need to wait for that next big thing. Because with the Omni pod promise you can upgrade to Omni pods latest technologies for no additional cost as soon as they're available to you and covered by insurance terms and conditions apply. And all the details of course. Alright, on the pod.com forward slash juice box. A moment ago, I asked Jenny about burnout. And this was her answer.

Jennifer Smith, CDE 18:59
It's a good question. And I've it's not that I haven't thought about that myself. I mean, I've seen the burnout books. You know, there's a lot of there's a lot of resource in terms of burnout, but I don't I don't honestly know, I don't feel like I've gotten to the point of burnout. And I don't I've asked myself I'm like I don't I don't know why. I don't know why I just don't do some of the things that are typical for burnout habit or burnout tendency. I had a friend that I met in a diabetes training camp as an adult and I think her sort of acronym was PMA positive mental attitude. And when she brought it up at Camp I never thought about like applying a term to kind of how I think about things. But even before diabetes, and I have memory of that, because I was certainly not young, young, right? I am typically a pretty happy person. And I don't know if that has something to do with it. I don't know. But I, I also was the person who went to college knowing what they wanted to do. I had a defined path, I knew that it was gonna probably take some turns and angles and wasn't going to get there directly after graduating from college. Right. But I think some of my positivity goes into how I talk to people and teach people. And I felt long term like I had a really good diabetes educator to begin with. I had a really awesome dietician. I don't know if I hadn't had them as good bass. Would I have even decided to go into this as a career. Because at that point, when I was diagnosed, I actually wanted to be a veterinarian. Okay. I had done stuff with our local veterinarian, I had done some, like volunteering in the office, and then loved my dietician loved her, and transitioned in high school to thinking, Well, gosh, I really like nutrition. I really like where this can put me. And I felt even at that point that I wanted to give back. I wanted to be able to teach people like, why I could do what I did. So I don't

Scott Benner 21:43
know. I wonder if you know about yourself that if you were very angry, because I've spoken to you privately when you've been upset about things are sure pissed off, if you were very angry, and I shut the audio off and could only see you, I would have no way of knowing you're angry. Like you smile through anger. Like I don't even know if you're aware of that or not. Like you don't you never look unhappy, which I think is also why I think of you as younger. Oh, well. That's a good thing. Yeah. And, and I take your point. And, you know, from my perspective of talking to, I mean, at this point, there are probably 60 episodes that have been recorded that aren't out yet. So I've probably spoken to like 700 people who have diabetes or love somebody who has diabetes. And recently and I've talked about it in smatterings on the podcast. But recently we found out kind of out of nowhere that my mom had cancer, that she had just been healthy. And then she didn't. And then she wasn't, and she's had surgery since then she did really well through the surgery. And she's got chemo coming up in a couple of weeks. And, and so she's doing very well for her situation. astoundingly well, she's 79 years old. But as I was taking your home one day, from a doctor's appointment, like in the car, I felt like I was talking to my kids was very strange. You know, you get your kids in the car, and you're like, let me explain something to them why they can't get away. And I said to my mom, I said, Mom, I've spoken to a lot of people who have lifelong illnesses. And if you ask me what the biggest differences between success and not being successful, I said, I can't believe I'm saying this. I think it's attitude. I just think it's desire to fight an attitude, and not falling down a well of despair. And now, there are some people who are predisposed to that, right? Like some people are more predisposed to depression or anxiety and a lot of things that make diabetes more difficult, right? Correct. And as I asked you the question, have you ever burned out? In my mind, I thought, There's no way she has like, you just, it's not. It doesn't seem like how you work. But but that's not to say that a person that it happens to, is doing something wrong, I just, I just think that outside influences hit you. And the chemical makeup in your brain responds the way it responds. You can't tell you can't tell a depressed person not to be depressed. Right? Right. No, right. And you cannot and you and I don't think you can tell a person who has no inclination towards depression. Go ahead and get depressed because I grew up as broke and kind of destitute at times, as you can imagine. And I've never felt depressed in my life. Really? You know what I mean? Like, and I've had some pretty bad things happen to me. And I've rebounded from them pretty quickly, not effortlessly. They were difficult, like personal like things to write. But I think people just get they can't help it. Just pull out a dream, you know?

Jennifer Smith, CDE 24:44
Yeah, I mean, I can think back honestly. And I've read I mean, I remember my diagnosis very well. I remember being in the hospital at that point. They kept me in the hospital for an entire week. And even even in the house As my friends came to visit, and I had a room full of balloons, and you know, all of that kind of stuff, I never even at that point, I don't remember, maybe I was, but I don't remember being angry about being diagnosed with something that now is going to be a daily thing to manage. That means like being handed like a newborn baby and be like, Here you go. Figure it out, because it's all brand new. And it's all up to you. You know? I mean, I did I have really good support from the beginning, did that make a difference? I have to say that that was at least a good piece of why I started out managing the way that I did. And even at that point, management was very simple, right. And I was diagnosed at a point in which glucose monitors, home based glucose monitors had only been on the market for a couple of years. It was hadn't been a long time. But I never remember being angry about it. I can remember situations that made me angry. At more like a person, like my mom, for example, in high school, I so wanted our, our, our boys, varsity team made it to state. And it was in a city that was about an hour and a half away from where we were, and all my friends, they had all like put in and like gotten a hotel room to stay over. It was one night, and then the next day as well. Everybody was going to go right, I thought everybody was going clearly that only meat was staying home. But my mom was like, Absolutely not, you're not going you know, all these things. And I know a piece of it, that she'd never said, I'm worried about your management. There are all of the other things that were brought up. But in the back of my mind, I had a sense that a lot of it was her worry that nobody else would know what to do to help me which wasn't really the case. I mean, I'd really good friends who knew signs and symptoms of low blood sugar, they knew I had like, raisins in my pocket and stuff, right? As well as parents, you know, their parents who I had slept over at houses, and they knew how to help me and what to do, but I was not allowed to go. And I remember being irritated. Not that I had diabetes, but that I think that I thought that my mom thought that was enough of a reason to be like, you can't go

Scott Benner 27:39
it's not safe. You know, hold your

Jennifer Smith, CDE 27:42
I was a senior and it would have been I was probably eight teen because it was my senior year in high school. Okay.

Scott Benner 27:51
So you know, I have to name this something specific. But if I didn't, it would just be called Jenny has raisins in our pocket. You don't get I don't get to be on the episodes where people name their own stuff by saying crazy things out loud. But you said you feel like that's as close as you came to being upset?

Jennifer Smith, CDE 28:12
I do. I really do. I mean, even through like another point that's is since I work with a lot of women through pregnancy with type one, right? I think that I could have been irritated about it during my pregnancies. Had I not had a good MFM team that really outraged outright told me they were like I you know, outside of your diagnosis, I wouldn't have you coming to a high risk clinic because you're doing a really good job of managing, like, you know, your visits here are not really as necessary, because of everything that you're doing. Could it have been different though, if I had a team that really didn't respect what I knew how to do? Sure, but I think I don't, I don't think that I've been angry about the diabetes, I would have been more angry about their interaction with me, it's

Scott Benner 29:11
interesting to me because there's so much about us that it's out of our control. Like you're also like, you know, you're generally speaking a lean, athletic person to like if you had a different body style, it could be different for you just as sure theme as if the chemical makeup in your brain drug geared more towards being sad about it. Like it's, you know, one size doesn't fit all for everybody, obviously, but I just wanted to ask you if it ever happened, and now that we say that it hasn't. How do you help people with it when it does happen? Because now you're more clinical and less like it's not your personal experiences come through other people now instead of through yourself, right? Because you speak to a lot of people I imagine this Yes.

Jennifer Smith, CDE 29:50
Right. A lot of people.

Scott Benner 29:52
Yeah. It is interesting for people to know that like, like my personal experiences that come through my life. are one thing, but now I have personal experiences by talking to other people to like I keep opening up my perspective by meeting more and more people, right? I had a person asked me kind of privately the other day, they were surprised that there was a afterdark episode about heroin use. And I was like, I was like, I don't know why you'd be surprised by that. I, you know, I was like, this is a person, this happens to people, it happens to people who have diabetes, like, don't you want to hear what it's like, so that you can expand your knowledge of things? So I just think of that as well, like, how do you deal with burnout? I guess a it depends on who you are. And, you know, like, and what your scenario is, do you have support from other people? Do you have good tools about there's part of me that thinks that a lot of burnout is avoidable? Just by understanding how to use insulin? I think that you know what I mean, like, it's almost like, right, it's almost like being tortured. When you don't know how to use your insulin, right? Because your blood sugar goes high, you have all those cloudy problems in your head, you end up you know, doing something about it, some people just leave their blood sugar high and give up. Some people Bolus like crazy, make themselves low get caught on that, you know, that bouncing up and down. There's so many different aspects that start to feed into it as it as it happens to you that if you can just avoid it. I think that's a big piece of it. Now, you might burn out on the on the necessity of what you have to do to avoid it,

Jennifer Smith, CDE 31:24
to avoid it. Right? Well, and that's where I think taking into consideration understanding of, you know, we have a huge list of variables, right things that we discussed things that people wanted to address, because they thought that they were variables and whatnot. But I think when you understand the variables that are in your life, like, I am not a mountain climber. Is that could that be a variable? Things like altitude and whatnot? Yes, absolutely. But in my day to day life, that is not a variable I have to consider. So I think some of the burnout comes from maybe not knowing enough of the variables that are your consistent things. And it takes time, you you have to learn to manage around those that are yours on a day to day or week to week kind of basis. But I think burnout comes more from, as you said, the up and down swings that look like there's nothing different that you can do that you've tried this, you've tried that and a big one that I see it happening is definitely parents. And I think a big piece in that picture. And it kind of goes along with adults to is overnight, when you're supposed to be sleeping. That major shift in glucose that has you up every couple of hours or the worry that Well, I adjusted. And now is it actually going to work the right way I have to get up again, I have to get up again, are alarms, nuisance alarms that are you know, they become a nuisance. Really, it's not that they're not necessary and beneficial. It's that they're they become a nuisance. They think the overnight time period is, is a place that burnout is most likely to come from, because not only are you managing something that looks really erratic at one point or another, but you're losing sleep. Yeah. So you're not getting this like revival overnight, which is what your body is supposed to be doing to get you ready to take care of the things the next day. I think many people can deal with the ups and downs in the daytime. Because you're supposed to be awake. Yeah.

Scott Benner 33:42
They it's so it's heartbreaking. I mean, I'm not. I'm obviously not bragging but I was away from Arden all day yesterday, we my mom is moving out of her of her apartment and going to an assisted place to stay while she's getting chemo. She just lives alone still, and we didn't want her to be by herself if the chemo might make her sick. Safety. Yes. And so I was gone yesterday for I mean, nine or 10 hours, like out of the house. And Arden went and got she got her prom dress yesterday. So there was some adrenaline that they handled pretty well. I think I sent one text and I was like here do this just because I don't think either of them thought that it was going to be super exciting to go get a dress but I had in the back of my head, there's a variable. And then they went to a meal later which my wife and daughter did a great job of bolusing for and a couple of hours after the meal. I started seeing a rise that I knew was fat. And I sent a text and I said you know have you done anything about this rise? And my wife said yeah, we added 10 carbs to the meal because she's looping and I said that's not gonna work because the the fats gonna act like its own separate meal. And I was like so just I just picked a number out of my head based on. I mean,

Jennifer Smith, CDE 35:02
just based what she had probably, I don't know what an experience I have

Scott Benner 35:06
no, I gotta be honest with you have no idea what she ate. I looked at the angle of the Dexcom graph and the number and how long it had been since she ate. And I said, Why don't you put a I think I said, 20 carb Bolus here like it's a new meal. And then by the time I got home Martin's budget was like, 84. Mm. Right. And

Jennifer Smith, CDE 35:24
but that's also hindsight. It's not like you've never seen graph happen like that. So you're, you know, even not really consciously acknowledging it. You're kind of going into the recesses of your brain thinking, this is more, it's about this more from previous experience of what I've had to do at this point of the day. Yeah,

Scott Benner 35:46
yeah, I basically said 20 carbs, she's like four and a half to one. So I was like, I actually was in my car. I was like, four 812 1620. You know, like, I just kind of I wanted to have about five units is what I thought, which is why Yeah, 20 carbs. And it's just the I've also seen the fat from these things kind of rest in the 20 to 30. Like, grams of fat. But that's not my bigger point on second. Excuse me, this is this could be it. I doubt it. He imagined. But anyway, it it. My point is, is that there are plenty of people who see that rise and stare at it and don't know what to do. Don't understand about fat impacts, like, you know, because you go to a restaurant, there's like, you know, don't think about how salty restaurant food is that dehydrates you. Like there's all kinds of things, right. But I've seen it so many times. Now. I just know what to do. And I think other people could get into that position as well. And I know you're in the rest of the time that we're talking. I just I'm thinking it's the end of the year, beginning of the year here. I was wondering, if, if someone's listening to this, and they either want to figure something out, start over, put an end to whatever madness is going on in their life. I just thought we could spend a couple of minutes here at the end just telling them maybe, you know, I'm not into like New Year's resolutions, but, you know, like, where to start to start over again.

Jennifer Smith, CDE 37:19
Yeah, I mean, well, I think a, an easy one, quite honestly, if they're gonna stay with information from a podcast, they could easily just do the very first pro tips, honestly, which is like newly diagnosed or starting over, right? It's a what, what do I really need to look at? I mean, you're motivated enough to say, I have done I'm so burned out on this up down that I can't figure out and nothing looks like day to day is ever the same. Then starting over by saying okay, well, maybe you need to simplify things a bit, right? Maybe you just need to go to K I am just going to eat like three meals today. And I'm going to see what happens after the meals whether you're injecting insulin or pumping insulin or you got some algorithm driven kind of you know, management if those are your big pieces that the roller coaster starts after address where that starts right for many people it's definitely meal times. If it's not, you feel pretty good about the daytime but it's the overnight that you're like, I have got to get sleep please let the you know Sandman dust calm and let me sleep tonight. But then, you know, maybe that overnight is oh gosh, I don't know what's wrong. So maybe I have to do a Basal test. So if you simplify down to a point of time, versus the vast like whole 24 hour for many people that it makes it more doable Yeah. I think

Scott Benner 38:56
that and I wonder if you agree but for all the graphs that I've seen, and I used to just see them when people sent them to me but now the Facebook page is like people post a lot of graphs This is crazy. I've been drinking water the Hold on What I would say is without seeing your graph or knowing your life if you're struggling like this, Jenny's right on like your either your Basal is bad and it just could be better or you're bad at meals like like just bare bones like I know we don't usually talk like bad but like, like just just to kind of shock you into place. You're either not Bolus in your meals correctly with timing or amount, maybe both. And if your Basal is wrong, those meals are going to be more difficult it's super easy overnight to find stability because there's no food in there. Now there's sometimes there can be growth hormones and but but you're looking for long stretches without meal insulin or food where there's real stability like stable blood sugars, you're not fighting lows, you're not fighting highs you're sitting, and you have to decide what that means for yourself, I can tell you in my life, I think my daughter's Basal is perfect when her blood sugar sits in the, like 8090 range, like right in there. I'm pretty good with that. And then from there, if you're eating and blood sugar shooting straight up, well, you didn't Bolus, right, you know, like so learn about and some

Jennifer Smith, CDE 40:22
of that might be from ratios that you've been given that aren't absolutely correct at all right, it might just be recognizing Well, I've put into action, I've heard all this about Pre-Bolus, I've put that into action, and my blood sugar doesn't even move when I Pre-Bolus 45 minutes, and it's just sitting there. And then I can eat and it still rises Well, you know, there are a couple things to look at there. So your settings

Scott Benner 40:47
need to be like all of this is predicated on your settings being right, meaning that your Basal set where your body needs it, meaning that your insulin to carb ratio is at a place where it's going to be effective. And you need to start understanding that all foods aren't created equal. And you might your carb ratio might work great for I don't know, like, you know, some natural food that's, you know, just a, it's just what it looks like on the plate versus, you know, having something processed, that you don't really know what's in there, the impact it's going to have, like, they can tell you how many carbs are in it. But that doesn't mean it's going to impact your blood sugar commiserate to the carb count. Right? But, but Jenny's point is right, like we can sit here and kind of like spit ball around. But the truth is, is that the answers are in the Pro Tip series already, like I could, I could just, it's there, like you have to go listen to it. But that's the part that I wanted to, I wanted to say, because I do see online that people get can get so frustrated or so far into the weeds are so tired that even saying to them look in these, you know, six or 10 hours of listening to a podcast? Or the answers, they'll say I can't do it. Like I'm into that I have to say to you, like I understand, but I think he can't afford not to do it. Because you just you just gonna be lost forever the way you are right? Like, yeah, you have to take a stand somewhere and say, Alright, I'm going to give away some other stuff in my life, I'm going to and I know, you've probably heard a million things about diabetes, you think Well, I'm gonna hear one more thing, it's not going to help, this is really going to help if you listen and understand those pro tips even, I don't know 50% understand them, your ACE earring, once he's gonna come into the high sixes if you really understand them, it's going to come into the lower sixes. And when you really start putting it together, I mean, there'll be a time in your life where you could have a five without trying.

Jennifer Smith, CDE 42:40
And I think the good thing about the pro tips episodes are really two that again, in conversation, we bring in other pieces that could be being considered right things that might be other variables that are hitting just you right, are, are all of your labs, like your thyroid, is that in the right place, because there are a lot of other health related things that despite all your best efforts with your diabetes management, and testing and evaluating may actually be making diabetes management more ragged, it might be making it harder for you. So you know, while type one is typically, you know, the focus is on blood sugar and insulin and everything. Well, if you have type one, and another autoimmune disorder that isn't managed, that could be a piece in the mix, too. And that's leading to your being frustrated with what you thought was right. Yeah. And actually should be right. And it's not. Because of this other thing.

Scott Benner 43:41
I can't say how much compassion I have for that feeling of like, I'm doing everything I was told to do. And nothing's working like I am. I have so much empathy, if that's happening to somebody. Because it's maddening. It really it just it's maddening. Well, in 2022, so Jenny, and I have kind of have, we have a plan, but we're going to do some, like addendums, or add ons to some of the pro tip episodes to kind of like take deeper dives into them. And I think I'm going to try to sneak in a defining series around thyroid terms to because over and over again, I just see people I don't think I don't think that many doctors do a good job of explaining how important thyroid management is to people who need thyroid medication. And you

Jennifer Smith, CDE 44:29
did you you talk to someone right? You talk to a physician,

Scott Benner 44:34
her episode is terrific. But I want to do like just i What do I want to say when people come in to the show? And they're like, where do I start? Like it's easy to say listen to the pro tips. Right? It's but there's some people are so newly diagnosed are so confused, that they need someone to go through and define like, like you can't just hand somebody a toolbox. You have to say to them, this is a hammer. You hold it in your hand like this, and this is how it strikes nails. Now, when you hear that you need to use a hammer, you don't go I don't know what a hammer is. You like the definitions essentially? Yeah. So I think we need definitions around thyroid stuff too. And and then I think towards the end of the year, when that's all done, I think I'm going to reinstate ask Scott and Jenny, if we have time, cool. I like it when people send in questions. And we

Jennifer Smith, CDE 45:23
know the questions are great. I love and as like, as you said before, I mean, I don't work for you like, this is purely because I can't duplicate myself, I can't see enough people. Privately I am, this is a way that I feel like that original feeling when I went to college, to get to this point, I wanted to be able to teach people that there was there was management, there was a sense of being able to feel like you've got some peace in control, right. And I like I don't know, I like doing this because I, I hear back from Scott all the time, about people's comments and things. And I'm glad I'm glad to be able to do something like this. That gives out into the world people I will probably never meet information that I hope is beneficial to helping people live well.

Scott Benner 46:26
So I know that that's how you feel because you've, you've just echoed that to me over and over again over the years. Because there's times that I've said to Jay, like, if I'm taking advantage of you just say no, like, you know what I mean? Like, and she's always like, no, I really like doing this. And you know, this year, if I showed you a chart of the downloads every day, this year, 365 of them in the last half of this year, the show has doubled since the first half of this year. And I was thrilled by how many people listened to it in the first half of the year when not what I was like what is happening. So to your point, like Jenny could say to you like she could come on here and say, this would not be uncommon in in just not the diabetes space. But in the health space, where people jump on to programs like this, where they know they're going to reach people, they say some basic stuff, just enough to whet your whistle and make you think, ooh, that lady knows something I need to know. And then they draw you in and say, Okay, now pay me and I'll tell you the rest of it. And in fairness, Jenny, this is what you do for a living. And yes, yes, but there's a whoever you are inside, whatever makes you smile while you're angry. Jenny just wants to reach as many people as she can. She's not saying I only want to reach the people who are going to pay me and she thinks that this podcast is a valuable way to do it. Is that fair to say? Yes. Yeah.

Jennifer Smith, CDE 47:44
valuable way to provide again, I mean, the especially reaching more people around the world now, which I know that you are, which is great. I think resources around the world are different country to country. And they're different enough that having worked with people outside of the United States that people really value information that is right, but also information that they can apply. That's not just a standard form of do this, do this. And it should work out or getting the other statement, which I hear often from people, which is Oh, that's just diabetes. No, really. I mean, sometimes there are I call them bad diabetes. Herodias. Were like, I've thrown every magic potion at this. I put all the mousse into it. I don't know what the problem is today. But you know, even those I like I compartmentalize them, right. It's okay. And then tomorrow is another day, right? Yes, I just go forward. I'm like it was done. Today. Looks great. Just gonna go.

Scott Benner 49:02
Yeah, everyday, everyday is not to throw your hands up in the air and give up there, though. It does happen. I mean, I I've had the same thing happen here where I'm like, Look, we changed your pump. We did everything we're supposed to do. i Let's just wait. Drink a bunch of water and try to stare at a wall for an hour. We'll see what happens. Don't think about anything, just let it go. I take I really do take your point. It's I think that the one the thing that gets done on the podcast that I'm most proud of is that, you know, I saw someone recently say to me, Well, I got a note from someone that said, Okay, ready, this person runs a Facebook group about diabetes. And somebody who listens to the podcast was on their Facebook group and someone asked a question and they answered it. They said if I was you, I'd make the Basal stronger here. And they that's not what they do in that group in that group. They would have explained to that person, very simply call your doctor and ask them and that's just I mean, that's fine. There's nothing wrong if that's the kind of support group you want to run. I'm okay with that. But you know, it's not my business. That's just not what we do here. You don't mean like, you're going to get like a concrete answer that you can go as an adult and make a decision about on your own. If you want to call your doctor, you should. But in the middle of you struggling with all the things that we just brought up, that could be going on in your life, to be told, we'll just go call a different person now like, like, Man, I'm here asking you like it. I mean, like you either have an answer you don't? I think the answers are inside of this podcast. And I'm proud of that I can't force feed it to everybody, I can't give you the time to listen, you know, all I can say is that Jenny and I have done our best to like, put out what we know. And hopefully it's valuable to you.

Jennifer Smith, CDE 50:47
And I think the good thing too, is that you don't have to listen to the whole, you know, like library worth of podcast episodes, to get it all working. If you're really struggling with one piece. I would guarantee searching in there for this topic, you will find at least one episode about that topic. And then hey, maybe your questions get answered. Right. And that's great to point

Scott Benner 51:15
of the pro tips was to put ideas in singular places, because the truth is, the podcast works the way my brain works. There were answers but you had to like listen to get them all out. And I used to just say to people, like, Look, if you listen to the podcast, you'll understand. And then at some point, I just thought there are so many episodes, like that's not a reasonable thing to say to people anymore. So that's why this stuff is here. So you have to understand how a podcast is set up, Jenny and I started putting these out in 2019, you're gonna have to go back in the podcast player and find them. I can't I can't just repost the pro tips. So for people who are longtime listeners to understand how a podcast works, I mean, I can I guess, and there's been a part of me who's thought it through? Like, can I just repost them as new so they pop up in the front. But that's very unfair to people who have already heard them. Right. You know what I mean? And I

Jennifer Smith, CDE 52:07
don't because people want new information. If you've been a long enough listener, you want something that's new, right?

Scott Benner 52:14
Yeah. And even on a podcast, like it's impolite to jam old content to people. Like, I don't want to fill your podcast player with something you've heard already. Right? Not that the contents not super valuable. But you got to go find it. And I've done right, you can go to Juicebox Podcast, comm and find it. You can search in your podcast player, you can go to the Facebook page and ask around there's lists in the, you know, on the Facebook page, there's lists. If you want it, it's there, you can find it. And if you absolutely can't find it, send me a note, and I'll tell you how to get started. But don't bother Jenny. I'm just kidding. Oh, Jen, you don't know anything about where to find the podcast?

Jennifer Smith, CDE 52:52
Oh, no, I don't I have to serve some myself. I know this was in here, or somebody will ask me and I'll be like, I'm talking to somebody. But episode was I know you talked about that and be like, I don't know. Let me look for no idea what numbers the episodes are

Scott Benner 53:07
your recollections better than mine? Like sometimes Jenny will be like, we talked about this already. You have to understand from my perspective, like wherever you're listening in real time right now. I'm like six months ahead of you. Like so like I recorded something. I'll record something tomorrow that you'll hear in like July or August of 2022. Great. So when people are like you remember when you said this this lady? I'm like, no, no, I do. He wrote me. I mean, tell me the story. I'll see if it jogs my memory. But it is not easy. Like I live in like two universes almost when it comes to this, like I'm in the present. And I'm in the future at the same time. So anyway, Merry Christmas, Happy New Year. Whatever you, whatever you, whatever anybody celebrates. I just thought, you know, it's always nice to start the new year or end the old one with Jenny. Oh, I just thought we could do that this time. Well, thanks. Thank you. I appreciate Yes, very much. Yeah, absolutely. Thank you. Bye. Bye.

Let me thank Omni pod for sponsoring this episode of The Juicebox Podcast remind you to go to Omni pod.com forward slash juice box to find out if you're eligible for a free 30 day supply of the Omni pod Dash. And don't forget to go to touched by type one.org and find them on Facebook and Instagram. I also just want to thank Jenny for everything that she's put into the show this year. And for the years before that. I guess the previous years would be the way to say that for like this year and previous years probably would have been a little smoother. I want you to know we're not like other podcasts over here at the Juicebox Podcast. Content keeps coming. I don't care if it's Christmas, New Year's, my mother in law's birthday or Halloween. Keep checking that podcast player. I'll be there

#596 Diabetes Variables: Alcohol

Diabetes Variables: Alcohol

Scott and Jenny Smith, CDE share insights on type 1 diabetes care

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 596 of the Juicebox Podcast

so this is it. This is the last episode of the diabetes variable series with me and Jenny Smith. And today's topic is alcohol. You see how I've timed that to coincide with New Year's? Huh? That's right, I'm thinking. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Today I'll be speaking with Jenny Smith, Jenny has had type one diabetes since she was a child for over 30 years. She also holds a bachelor's degree in Human Nutrition and biology from the University of Wisconsin. She is a registered and licensed dietitian, a certified diabetes educator and certified trainer on most makes and models of insulin pumps and continuous glucose monitors. She's also Jenny from the Juicebox Podcast. So come proper. I really hope you've enjoyed the variable series, if in the future, Jenny, and I think other ones will add them. But if not, they're always there for your needs and enjoyment.

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. Jenny, this is the last variable we're going to record. It's very exciting.

Jennifer Smith, CDE 1:51
That is very exciting. A whole year of recordings of variables. That's that's a lot of variables.

Scott Benner 1:55
I'm not kidding about it. At one point, I looked at the list and I was like, Why do I like this is not a good idea. But it ended up being great. And I really did enjoy it, you obviously brought a ton to it. So last one alcohol. How was alcohol a variable for for using insulin?

Jennifer Smith, CDE 2:15
Well, alcohol is a variable because alcohol can lower your body's ability to respond to the typical turnaround hormones that would raise blood sugar, you know, if you have a low, and so alcohol in and of itself, and we're talking like several drinks, or even just wondering, depending on how your body tolerates alcohol. And many people I think are kind of confused what to do about alcohol because they feel like well, if they're drinking like hard liquor, for example, really doesn't have carbohydrates in it. Right? So you may not be bolusing for it. And should you know not not necessarily unless it's mixed with like cranberry juice or orange juice or something like that, right. But other types of alcohol such as beer, have a fair amount of alcohol to them. carbs, or sorry, yes, alcohol, carbs. Yes, thank you. I was thinking Alcohol Alcohol. Yes. So there's, you know, I mean, anywhere between 12 to maybe like 22 grams, depending on the size of the bottle or the can or whatever you're drinking, really. So do you cover the carbs? And then what happens later, right? Do you take insulin to cover the bottle of beer that you're drinking? Do you not what happens most people who don't cover the carbs initially will have a higher blood sugar.

Scott Benner 3:42
So is the concern around bolusing for carbs that are an alcohol that at some point, you become a knee braided and are not the best shepherd of your blood sugar if it gets low?

Jennifer Smith, CDE 3:52
Those are the good questions to always be thinking about. Yes. Because in terms of low from alcohol, low from alcohol is a delayed low. It will tend to happen later on. So our typical recommendation on a normal conventional pump. It's a little more a little more, I guess difficult if you're doing injections, but on a pump, it would usually say at the end of the night, let's say you've had several drinks over the course of the evening. It's midnight you get home at that point, you want to really decrease your Basal insulin delivery, because that's when alcohol is likely to come into the picture in terms of hitting you and causing you to go low.

Scott Benner 4:41
And is it the actual alcohol that's bringing you down or is it your or is it the Bolus that you used or know if even if you didn't Bolus you would get low afterwards.

Jennifer Smith, CDE 4:51
It shouldn't really be the Bolus I mean again bolusing has a definite like end point of action right let's call it four hours, just give or take three to five hours, four hours. So if you left Bolus at 10 o'clock, you're low at 2am. Sure, it could have something to do with some of that Bolus still being left in the system. But it could also have to do with the way that the liver turns around and deals with, let's call alcohol a toxin, right. So as the liver is dealing with turning that alcohol around and getting rid of it in the body, your liver is also not putting out the typical turnaround for drop in blood sugar, right? You don't have that counter regulatory hormone production, so that your body has some glucose drip coming out of it saved stores to help you. So in that, we usually say for every alcoholic beverage consumed, we really want to take the Basal rate down by a certain percent for about two hours per beverage consumed. Okay, so if you had three beverages at the end of the night, the percent that we would take it down would be by 40% of a decrease. And then the timeframe to decrease would be about two hours per beverage.

Scott Benner 6:08
Okay, so So you're basically people might not recognize that your liver is making glucose in, you know, and giving it is giving it off, like glucose, is it glucagon or glucogenic? Or I forget the word,

Jennifer Smith, CDE 6:23
right? I mean, your body's counter regulatory hormones essentially coming from the liver or helping your body to essentially put out in the TR in terms of a low or a drop like that, it's helping your body to put out the glucose, right? I mean, that's why we have glucagon kits, right glucagon kit is a really quick turnaround of telling your body to spit out the glycogen and to turn it around into glucose to sort of bring you up from the low.

Scott Benner 6:51
But if you're, if you're taxing your body with enough alcohol, the liver gets focused on that. And then as your blood sugar gets low, it doesn't go through that process. In the same

Jennifer Smith, CDE 7:02
way, it doesn't go through that big process of counterregulatory. But also remember, the reason that we're taking Basal insulin is to counter the production and natural drip drip of glucose into our system to begin with. So if the liver is busy taking care of alcohol, it's no longer going to help with that normal drip, drip drip of glucose, and thus, your Basal is going to be too heavy for you. Okay, in layman's terms, right. I mean,

Scott Benner 7:29
listen, it's not a it's not a deep dive into how the liver works. But it is something I don't think people think about for certain, you know,

Jennifer Smith, CDE 7:37
and I think it's something that often isn't even brought up like I, I try really hard with a lot of the teens and those heading off to college that I work with, I try to bring up alcohol at some point, because it will come into the picture. Yeah, I mean, unless you're unless your kid has really sworn off, because they just don't have any interest in that. At some point, alcohol will be something they need to think about. And it's really important that they know better how to adjust if needed, than just say, Well, I'm never going to do it.

Scott Benner 8:12
Right. Okay. Does this? Does this need a bigger episode? Or? What do you think?

Jennifer Smith, CDE 8:19
Come on. What do you have more? More questions?

Scott Benner 8:22
No, I just I don't know if it's, I don't know. I mean, it's like, you know, it's if you're, if it's beer, beer has carbs. If you're drinking, you know, some harder liquor, there's no carbs in them. But you have to look and see if you're going to add fruit juice just seems like maybe I could understand that when I start. But what happens when I'm like three drinks into it? Like, where do I? You know, what do I do when the when the room starts spinning? You know what I mean?

Jennifer Smith, CDE 8:45
Right? I mean, the big things with alcohol, too, that we always recommend is definitely have something to eat with it. Right? So it's not just alcohol. I mean, you you probably know that. Or maybe you don't, I don't know, whether you drink or not. But if you don't, if you drink something on a pretty empty stomach, the impact of the alcohol is faster, right? You will feel the impact. Versus if you have it with a meal or at the end of the meal. Are you drinking along with the meal? It's much of a dumbed down impact. Yeah. Which may also then if you were expecting the impact of alcohol may lead you to drink more, because I'm

Scott Benner 9:23
also that there might be people who are wanting to get to that spot too. It's a really difficult thing to talk about, because you're talking about it from the perspective of how do I do this responsibly? And I don't know that everybody starts an evening of drinking with that in mind to begin with, right?

Jennifer Smith, CDE 9:40
Correct. And you also have to consider like, i i much feel like if I and I've only been drunk a handful of times, I'm not a drinker. I I'm, in fact, I came I think the last time I was drunk was probably at my brother's wedding in Aruba. And that was a long time. And it was a lot of fun. But feeling drunk, feels very similar to a low blood sugar.

Unknown Speaker 10:10
Okay, those tip sees

Jennifer Smith, CDE 10:13
types of maybe that's not a symptom of yours, but I very much have a similar feeling with alcohol as well as with a low blood sugar. Yeah. So then comes into the equation, you're also already not really thinking very well, because you have alcohol on board. Is your symptom of being drunk? Also a symptom of a low that you're not paying attention to?

Scott Benner 10:38
Yeah. And how are you going to be able to handle that I'm so I'm just thinking of a person I met recently, whose son was away at college and was not a drinker, not a drinker. And then all of a sudden, one night just dove headfirst into it. And then this person had to, like, driving to a place to like, rescue the kid and take them to a hospital. Yes, you know, because then the next problem is, is that you're now around a bunch of drunk people, no one's gonna be able to help you. Like, you know, the, it's not like you have a designated, what if my blood sugar gets low person here? You know,

Jennifer Smith, CDE 11:11
right? I mean, it's the reason in college that I 98% of the time, I offered to be the driver, when we would go out. And I might have knowing that we are going to be out for a fair number of hours, I might have like, half a beer when we got there. And then I had nothing else the rest of the night giving it a good like four hours of clearance time to be able to be like the driver hole.

Scott Benner 11:39
I can say with confidence that in my life, I haven't had the equivalent of a case of beer. Like I just don't drink for no reason that I can particularly point out to you other than it's not interesting to me. It's just not a preference. Yeah, it's not for me, I I just I don't know, like, I don't even know how you like consume that much. Like, I have a bottle of like, flavored like peppy water here. Uh huh. And if I tried to drink this whole bottle, I'm like, Oh,

Jennifer Smith, CDE 12:05
I can't really be too much. Yeah,

Scott Benner 12:06
happens when you start putting, like hops and barley. And don't I be like, Oh, I'm so full. But yeah, but anyway, alright, I appreciate this. I know, it's, it's not an easy, it's not an easy conversation, because there's a lot of perspectives that didn't need to be taken to account. But I think in general, I mean, at least you could try to follow what Jenny was saying about decreasing your Basal. And, and, you know, I would add, you know, you gotta have I would want to have somebody there that understood my diabetes a little bit who wasn't drinking,

Jennifer Smith, CDE 12:35
but correct. Absolutely. And I mean, even people ask even about wine, you know, a glass of wine, typical table wine is somewhere between three to five grams of carb, per, you know, glass, should you cover that? I think a lot of it is also experience, right? What do you know about what has happened, and along with what you said, make sure somebody is there who knows, you knows you have diabetes knows how to help you if you don't seem to be acting, the way that you normally would be acting? Because all of those things very much like all of the things with diabetes in general, take a little bit of experimentation. And you have to figure out what works the best for you.

Scott Benner 13:17
Let me let you I know you have to go. But let me ask you this, because I think I remember that this is true. When I'm drinking. My glucagon won't work as well, right? That is, right. Yeah. Okay. So if you're thinking doesn't matter, if I pass out, I'll just use my glucagon, it might not help.

Jennifer Smith, CDE 13:35
It will. I mean, will it turn things around versus nothing at all? Yeah, but it's not going to be the same impact from what I recall. And I would, I mean, it certainly would look it back up, but I'm quite certain nothing has changed about the recommendations and what we know about your glucagon kit and alcohol in the mix

Scott Benner 13:56
together. Yes. So read the label on your glucagon if you're expecting it to save you when you're, you're drunk, because it might not be as impactful as you're hoping. Okay, Jenny, that somehow we made drinking sad, and I'm sure everybody oh

Jennifer Smith, CDE 14:14
well, people don't see us so they can't tell whether we're smiling or not.

Scott Benner 14:18
Having a great time talking. I'm like I just started thinking like we're taking the thing where people like oh my by Saturday night happy place. These guys are bumming me out. All right, well, thank you so much. 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. Forward slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G Vogue glucagon.com slash risk, and the diabetes variable series began, I guess technically at episode 231 with the pro tip called diabetes pro tip variables, but then the variables proper began at 491 with trampoline followed by temperature travel, exercise hydration, food quality leaky sites and tunneling video games, stress masturbation school bad sites growth hormone sleep pumps like placement of full moon, diabetes, tech weight change, Walmart, the final episode, sort of the last episode menopause and today's episode, alcohol. Check them out. They're all available in your podcast player. We're at Juicebox Podcast calm. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#595 Plane to Maine

Barb is the mother of a young adult with type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 595 of the Juicebox Podcast

the title of this one came down to the wire, I was between plane to Maine and give a hoot. I honestly don't even know what I'm gonna do when I'm done with this, when I go out and actually type the words into well, it's a lot of technical stuff that you don't care about, but where you see the title of the episode, I'm still not sure what I'm going to do. Today I'm going to be speaking with Barbie. She's the mom of a child with type one diabetes. She's got an interesting story about how her child was diagnosed, and a ton more. You're just gonna listen. I can't you know what I'm saying here, right? Like, I can't explain the whole podcast he in 30 seconds. It's, it was a long and winding road. I don't know what we talked about anymore. I just remember having fun and thinking, yeah, BB was good. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. Don't forget in the show notes of your podcast player and at Juicebox Podcast comm there are links to all of the sponsors support the sponsors support the show.

This episode of The Juicebox Podcast is sponsored by touched by type one, they're absolutely my favorite type one diabetes organization. And I would like very much for you to check them out at touched by type one.org. They're also on Facebook, and Instagram. I also want to thank the over 300 supporters at buy me a coffee.com Ford slash Juicebox Podcast, just nice people who get motivated once in a while to buy me a coffee. It's a really kind thing that you do. There's like 35 members and over 300 people who have done it at least once. And I would love to thank each one of you in person. But since I can't, I'm just going to say it here. Thank you. Thank you, thank you very much. It's very kind. Your messages are extraordinary. The ones that you leave there buy me a coffee. Now I said the thing and you're going to buy me a coffee.com forward slash juice box, the messages that you leave there are just stunning and touching. And I very much appreciate them.

Barbara 2:31
I'm Barbara. I'm the mom of a daughter that has type one. And she was diagnosed last year. I'm also a registered dietitian. And we live in suburban Chicago.

Scott Benner 2:46
Nice. Okay, so last year 2020.

Barbara 2:51
Yes, right. I about six months into the pandemic.

Scott Benner 2:55
Oh, how old was how old? Was she? So?

Barbara 2:59
Yeah, so she was 10.

Scott Benner 3:02
Got it. I'm now making notes. My wife bought me this really cool little whiteboard.

Barbara 3:07
I heard about this. I'm trying to get one for my husband. He's a lawyer, but he likes old school legal pads. So it's going to be a big switch in our households.

Scott Benner 3:18
I've just so kind of sits in front of me while I'm doing this. And I can like so it doesn't make noise. You know what I sometimes I was like, I'd write stuff down on paper and it would be loud. So I can kind of make notes while I'm going in case there's something I want to remember to say which that's where it's become very helpful, because I'll think of a question. And if I can't, if I can't keep it my head, then I lose it. So now I'm just sort of like one wording, like jotting a word down and then coming back to it. It triggers it.

Barbara 3:48
That's so smart.

Scott Benner 3:48
No one told my wife what a good gift. This was.

Barbara 3:52
I don't want her to I might buy one for my husband.

Scott Benner 3:55
What are holding this over my head, but she will. Any autoimmune stuff in your family?

Barbara 4:01
None. Um, it actually you know, and I mentioned earlier that I'm a registered dietician. And honestly, even when I was in school, I didn't really learn about type one. So I mean, they, you know, with a section that we learned about in school, but we never really went into depth because we didn't see a lot of patients with type one. So it was sort of so far off my radar. How long ago was school? Um, so I've been a registered dietician now for 12 years.

Scott Benner 4:33
I was I asked because I'm wondering if you remember what they said about diabetes. While you were

Barbara 4:39
I want you to it's so interesting, because I have a visual in my head. You know, like one of those choking posters, where I'm, you know, like, you're talking about, like excessive thirst. Yep.

Scott Benner 4:53
I know what you're talking about. My daughter's had there was one hanging in my daughter's school that was about signs of hypoglycemia. They're all just like different, different cartoon faces with different levels of like, like horror on there, do you know?

Barbara 5:08
Exactly, exactly. So that that was sort of like the visual that I had in my head. But it wasn't something that I, you know, we didn't even know anyone at the time that had type one

Scott Benner 5:19
in the schooling didn't go deeply into it.

Barbara 5:23
It didn't go deeply into it.

Scott Benner 5:25
Okay. Well, that seems to be about par for the course. But I assume to that course, or I didn't mean these course twice, but your dietitian, that situation or even being a nurse, it's everything's an overview, you're not deep diving on anything until you get into a specialty, I guess.

Barbara 5:42
100% and, you know, I'm in private practice. So most of what I see is weight loss, or sometimes weight gain or healthy eating. Um, occasionally, I see autoimmune conditions, but they're, you know, they're, they're fewer and farther between,

Scott Benner 5:58
Do people ever come to you for to get like a food out of their diet, like somebody comes along and says, I'm celiac now. And I need to know how to transition to it. Do you ever get that kind of question?

Barbara 6:09
100%. And, you know, actually, I don't know if it's a coincidence. But I, you know, been seeing more clients that have autoimmune issues right now. And there are a lot of elimination diets that are now very common, you know, trying to find certain things that trigger inflammation. So I feel like I'm dealing with that a lot more

Scott Benner 6:31
people trying to get rid of like psoriasis, stuff like that. Exactly. Yeah. Wow, that's interesting. I wonder if you're seeing it more. Or if it's like, when you buy a new car, and then suddenly you see them on the road everywhere.

Barbara 6:44
I mean, 100%, I also have to say, since the pandemic, I've been really busy, because I feel like a lot more people have been home. So people are taking time to do things like, you know, figure out their diets and, you know, do more things for self care. Yeah. So it might just be just the sheer volume of what I'm seeing.

Scott Benner 7:06
I guess, when you get extra time, when you're not doing all the things that you used to do. You lose the excuse of like, oh, I would, but I don't have time now you're like, Oh, darn, I have time now. I'm gonna have to just keep telling myself that I guess.

Barbara 7:21
Exactly.

Scott Benner 7:24
Okay, so she's diagnosed at 10. Can did it come on in the classic way did you have like, you know, were you on an airplane over the Atlantic Ocean? Because I mean, pretty,

Barbara 7:34
pretty much had to get on an airplane, not over the Atlantic Ocean. But um, you know, when when COVID struck in March, my girls, you know, had sort of been home and my daughter was dying to go to camp. And her sleepaway camp was one of the few camps that were running. And we were a little bit nervous to send her but she, she begged us to go. So, um, that camp said that they were taking every precaution, you know, to prevent COVID, including, I think, three tests right before she left him, he had to do like a temperature check for a week. And so we decided to send her and she actually got on a plane and went with another family to camp. And about a week and a half into camp. I got a text message from one of the directors of the camp saying that, you know, she wasn't feeling well. She had thrown up a couple of days before. And they said that they had given her a couple of COVID tests, and it was negative. They also asked if she had a history of eating disorders because she was restricting her food. So I got, you know, very concerned. And I asked to speak with her on the phone. And I spoke with her on the phone, and I could tell that she really she was sort of slurring her words, she was crying a lot. So I very quickly hung up the phone and FaceTime her. And I noticed that she just she really didn't look well, she had lost some weight, which, you know, it ended up all the information kind of came out later, she had lost about 13 pounds in the matter of a week and a half. And my first reaction was just to tell them to take her to the emergency room. Because, you know, we were so far away. It it's i i Like I didn't know what to do. So the first thing that I could think of was just to have them take her to the emergency room.

Scott Benner 9:42
Can you say a little more about how it felt to be that far from her when she was struggling?

Barbara 9:48
I mean, it was there were so many factors in place. It was so hard. I mean, I think you know, any parent that sends their child to camp whether the camp is you know, a couple hours away or in this case You know, 20 something hours away, if to not be with your child when they're not feeling well is very, it's it's so difficult you just, you know, you hope that they're in good hands. And at the time, we felt like, you know, she had all this stuff going on and she wasn't in good hands. So that was that was really hard. And then, you know, when she finally you know, was was receiving care, I couldn't get a flight. Because you know, remember, it's about six months into the pandemic, so people weren't really flying.

Scott Benner 10:33
Yeah. Well, how far was she from you? Like states away? Or

Barbara 10:38
she was states away. So where, you know, we're in suburban Chicago, and she was in Maine. Wow. So and if you think about that, and she's kind of in rural Maine, so the closest town being Portland, which is still you know, a distance. So it was not easy to get to? And had I driven I mean, it would have taken longer than just waiting until the next day to get a flight.

Scott Benner 11:00
Yeah. Did they try rubbing seafood on her? Were they using all the main tricks? I wonder?

Barbara 11:06
No, you know what, it might have been better than what they were doing? Because, you know, later it turned out that they were giving her Gatorade, because she, you know, she wasn't eating was refusing to eat and vomiting, which I mean, you can only imagine Gatorade to the stage she cannot look at Gatorade

Scott Benner 11:22
was Did that happen at the camp? That happens at the camp? Yeah, well, camp. I mean, counselors are not, you know, they're usually younger. Right?

Barbara 11:31
They are. And, you know, they had it, you know, sort of a strange set of circumstances, because it was COVID. Normally, they get a lot of foreign counselors that are a little bit older. And because people weren't traveling, you know, I guess like with the travel visas and stuff, they ended up with a bunch of younger counselors from the US. And I just felt like, weren't really well trained,

Scott Benner 11:53
well, weren't well equipped for the dogs diagnosed type one diabetes. That wasn't on their to do list either. Plus everyone. You know, when you really look back, everyone has to be freaked out right in the beginning of COVID. And now there's this kid that's super sick. You know, everyone's looking at her going like kids got COVID

Barbara 12:13
100%. I mean, she said she had something like five COVID tests. And you know how unpleasant. I mean, I was very fortunate, I got vaccinated before I needed a COVID test. But they, you know, they the swamp goes all the way up your nose. And my daughter said it felt like she was drowning. And they did five of that.

Scott Benner 12:31
Yeah. Because they wanted to prove she had COVID. So they could put her somewhere and be done with her. And they and they didn't know what to do. And well, that's, you know, I have a tiny bit of a similar, similar situation. I mean, not similar with diabetes, but my son was in Florida playing baseball with his college team. And I was there watching, and he got sick. Like, right as and it wasn't like into COVID. It was like, those couple of weeks. Excuse me, like, you know, when I think mid March is when everyone kind of came to like grips with like, Oh, this is a thing, and I'm gonna go into my house now. So this was like, this was like, the week before that. And it's just rumblings like, you know, you still hear people saying, like, did you hear on the news, there's a thing, I wonder if it's gonna be a problem. Like it was still like that. For most people, and my son gets a viral infection while he's there. So. So luckily, that what he had was treatable with antibiotics. And you know, so I might not have met viral infection. I'm not exactly certain. Obviously, I'm not a medical person, but he got something that was treatable with antibiotics. And but as soon as he got sick, people backed away from him, like he was on fire. I, you know, and then we got the antibiotics into him, and it made him better very quickly. And then you had to basically go from person to person to go listen to antibiotics don't work on viruses. If this was cool, he wouldn't be getting better. And then you're counting on people knowing that that's true. And it was just everybody was at to arm's length from them. At that point. It was very first. Yeah. So I can see that happening for certain to your daughter as well.

Barbara 14:17
Yes. And, you know, there's this added dimension of her being at an all girls camp, and there being some drama. I think, you know, one thing that COVID has sort of done is it's made everybody a little bit, I don't want to say anti social, but you know, these were kids that were basically you know, at home or homeschooled on their devices since March, and all of a sudden, you know, they're away at camp with a bunch of other 10 year old girls. So there was there was definitely an element of girl drama. Um, and they kept, you know, citing girl drama as an example that she was restricting her food. So it was just so many different things at once. It was very overwhelming things

Scott Benner 14:59
started getting confused? Yeah, yeah, they were pointing at one thing and thinking it was something else. And yeah. Did the girls back away from her? Did she experience that?

Barbara 15:09
Yes. Because, you know, she had vomited a couple of times, which is often a sign of DKA. And everybody was so freaked out because that's also a sign of COVID. So there were some girls on the bunk that were kind of taunting her saying that she had COVID. I mean, you know, it was a lot. Yeah,

Scott Benner 15:27
no kidding. That sucks. How long did it take you to get to her day?

Barbara 15:32
So it took we found out so I got the text from the camp director, I want to say around three in the afternoon. And she basically I don't want to throw anybody under the bus. But she said no rush. But of course, you know, as a parent with a child multiple states away during this time, I called immediately. Yeah. By the time they finally got her to the emergency room is about 5pm. And so when I got the call from the emergency room, my husband was simultaneously looking at flights. So the next flight that I could get was 8am. The next morning,

Scott Benner 16:11
were you on your own private plane? Was it that part of COVID?

Barbara 16:15
I wish I could have you know,

Scott Benner 16:17
I don't know. I don't mean, can you afford a private plane? I mean, were there not only people on the flight?

Barbara 16:22
Oh, there was no, there was hardly anybody on the flight. I mean, it was I had like two rows to myself.

Scott Benner 16:29
Yeah, we flew home when I flew home from Florida. I was on a flight on a on a full flight with like nine other people. So like, I mean, like a giant plane with nine other people. We were just spread out as far as we could. People are like laying across three seats. It was the most comfortable I've ever been flying in my entire life.

Barbara 16:48
So funny. And I feel like that just changed very quickly. Now, back to being you know, pre pandemic levels.

Scott Benner 16:55
Yeah, no, I was on a plane. It's June. Now when you and I are talking, I just was on a plane. And it was it was packed. So yeah. But okay, so she goes, they finally you tell them to take her to the emergency room. So is she diagnosed without you there? Alright, this is a super short ad break, just reminding you to go to touched by type one.org. It's a wonderful organization doing things for people with type one diabetes, touched by type one.org. The one is a one like the number one, right so like, touched that's to I'm not gonna spell touched for you. And then by and then type and then the number one.org touched by type one.org. They're also on Instagram and Facebook. And you will spend no better few minutes of your life today than if you check them out. Touched by type one.org touched by type one.or Whoa, whoa. I don't know if I've ever done this on the podcast. But since I mentioned the buy me a coffee link at the beginning of the episode, I want to tell you that I'm sitting right now in an incredibly comfortable, well built and supportive chair that was bought for me pi to people who listened to this podcast. And it changed my life this year. An expensive chair is not something I would have spent money on on my own. Tiny little story here is that at one point on Facebook, someone just kind of got the idea. Like they want to do something nice for me. And that's how this buy me a coffee thing got started. And before I knew it, there was so much money being put into it. I mean, I don't know if it's buy me a coffee. It's just kind of a name. Like, I don't actually drink coffee. I assume you understand that. Anyway, I just was so grateful. And they had this money now. And I didn't know what to do with it. And so I said to people, like I can't just like I don't want to just put this money in my pocket. Like I want to do something for the podcast, I want you guys to get something out of it. And some kind people asked what I needed. And I just said like, you know, a more comfortable supportive chair would be a big deal. My back feels so much better than it used to. I spent a lot of time sitting in this chair, making this podcast for you. Anyway, it's a weird little thing that just never thought would happen in my life. It's odd and nice. And I don't know. You'd have to be in my shoes to know what I'm talking about to see a bunch of people, like hundreds of people come together and say, Scott, I want you to be more comfortable. Take $5 and buy yourself a chair is really like one of the more surprising and lovely things that happened to me this year. Anyway, if you want to do it too. I mean, I'll take your money. Buy me a coffee.com forward slash Juicebox Podcast. It is really just a kind of a superfan thing to do, I guess but it means a lot to me. So thank you very much

Barbara 20:05
She is, and I just I don't want to forget one thing because I think we have, um, oh, yes.

Scott Benner 20:12
No, I'm sorry, whatever you want to say go ahead, go back to what you were thinking we,

Barbara 20:16
we, we have a little bit of an interesting connection. So one of the things that I did after I spoke with her on the phone, so they handed me the phone to speak with her. And I very quickly switched the phone to FaceTime, right, just so I could get a look at her. And once I had a look at her was when I insisted that they take her to the emergency room. Yeah. But this is kind of like, you know, Post story. But um, months later, my husband had a friend that told him that he should write to Tim Cook. And tell him basically, that FaceTime saved our daughter's life.

Scott Benner 20:54
Well, at the very least, it it let you look her in the face. Right. And then there's a lot to be inferred from that.

Barbara 21:01
100% Yeah, I mean, I took a look at our NGBs big dark circles under her eyes. And she just she looked terrible. And she couldn't even sit upright, and she said her stomach hurt. But anyway, I my husband, and I had this little contest where he wrote Tim Cook. And he you know, and I will come as well. But my husband said that his letter was, you know, sort of more concise and to the point. So, I was like, Okay, fine. So my husband sent a letter months later, we don't hear anything. And so I sent my letter. And literally within 24 hours, I got a letter back from Tim Cook, thanking me for my letter, and saying that it's stories like mine, that you know, make them go on and do all the things that they do, but

Scott Benner 21:44
more importantly, approved that your husband's letter suck. That really is the most important part. You know, it's funny. You said a minute ago, you're like, we have this interesting connection. And I was like, Ooh, me and you.

Barbara 22:00
I thought you had some kind of Apple story. I do. Yeah. And I own story. Yeah,

Scott Benner 22:05
yeah, I do. When the first iPhone came out, I mean, the very first iPhone, I got one, back, then you had to stand in, I stood in an alleyway behind a cellphone store for hours to get it, actually, with Adam, who's the doctor who came on and talked about COVID a lot during COVID. He and I just stood behind an iPhone store for a couple of hours and got our phone. Anyway, I was migrating my pictures onto it. And it was super excited. And I know that's hard for people to believe now. But having a handheld device that would hold your photos or the even could have your calendar on it was unheard of at that moment. Like it just didn't exist, like in a real functional visual way. And so my wife was leaving for work one day. And I just stopped her to show her and she's like, I have to go and I'm like, no, no, look at this. And I only held her up for 30 seconds. You know what I mean? Like she she was had to get out the door. And as she drove down our driveway and then pulled onto the street, only a few seconds ahead of her a tree fell across the road, like this big branch from this tree like this giant branch that would have like, easily crushed anyone's car. And I was like, oh my god, I saved your life by showing you my iPhone. And, and I wrote that. Adam, actually I wrote it up in an email and I sent I shared it with a couple of friends. And Adam was like, send it to Apple. And I did. And maybe a few weeks later, I was contacted by a law firm in New York, that wanted me to sign an NDA before they would continue to have conversation with me. So they reached out to me and said, Hi, we'd like to talk to you about something we can't tell you what it is. If you sign an NDA, we'll tell you why we're contacting you. And I was like, I am fascinated. So I did that. And it was apple. So I got flown out to Los Angeles, me and about 30 other people. And we were we made each of us made iPhone story commercials. And I think they picked six of them that actually made it on to television. Mine did not make it onto TV, and I still made like $11,000 I got a week off and got to go make a commercial.

Barbara 24:15
That's amazing.

Scott Benner 24:17
But I don't think I was tall enough. Or I'm not sure exactly what I wasn't enough of. But, but mine didn't make it was still an amazing experience, though. And it was from doing that. I don't know if that stuff if anybody would even remember those. But there was like, like, I'm an airline pilot, and I use my iPhone to check the weather before I get to the airport. Like it was super simple stuff like that, because the phone didn't really do very much. Without apps, like really think about your phone without an app. It's useless. And then there was no app store really. So anyway, that's yeah, that was it. You didn't get to go to Hollywood like I did, though.

Barbara 24:58
No, no, my Sorry, in a very different editing.

Scott Benner 25:02
Just got the mock here has.

Barbara 25:05
Exactly. You know who is gonna write all the letters in the house?

Scott Benner 25:08
Well, I mean, also who's gonna shut their mouth? I would think. So how did she was there someone with her in the hospital for the first hours? Yes to get there.

Barbara 25:21
So. So basically what happened, you know, as I mentioned, it was sort of rural Maine, and there wasn't a major medical center, but because she was clutching her stomach, they thought maybe at the very least, she needed a sonogram. And this one hospital that was near the camp didn't have that kind of technology. So they thought that they were going to transfer her to a bigger Medical Center. But when she arrived at the first emergency room, they did one of the nurses thought to do a finger stick. And when they did a finger stick, they found out that her blood sugar was 600. Well,

Scott Benner 25:57
oh, so then they get her go. And where was she by the time you got to her? What state? No, she

Barbara 26:02
was she was in Maine. She was in Portland. I didn't

Scott Benner 26:05
mean like that. I meant, like, what state was her health in? Sorry, as I, as I said that, I realized that I like that.

Barbara 26:12
So I guess at the time, what the, what the the nurse said to me was that she was she she basically said, you know, we just did a finger stick. And she's in something called DKA, which I actually had to Google. And she explained that, you know, it's often when children get diagnosed with type one diabetes, she explained how high her sugar was. And this was like, you know, like, in those movies, when, you know, people are listening to their doctor, and their doctor tells them that they have cancer, and they just they don't hear anything. So my husband was sitting there while I was on the phone. And I felt like he was sort of googling so we could, you know, figure out what was going on. It was just very overwhelming.

Scott Benner 26:58
Yeah, no kidding. Okay, so she, how long was she in the hospital.

Barbara 27:03
So she was in the hospital for three and a half days. So she was in the ICU for a couple of days, I guess the standard protocol is to very slowly bring the blood sugar down with insulin. And what they basically had to do is, since she had to be transferred from the rural hospital to the major medical center, they had to give her an insulin drip in the ambulance as she was going. And they mentioned to me that there were, you know, slight risks involved, which is, you know, just another thing that and terrified me. And so when I arrived, she was in the ICU.

Scott Benner 27:42
So when when, when she gets cleared to leave the hospital, I'm assuming you're getting right on a plane.

Barbara 27:50
Yes. And that was that was terrifying. Yeah. Because I basically went, you know, they won't allow you to leave the hospital with a child that has type one unless you've gone through the education piece, so that I know how to give her insulin. So I left the hospital with needles with insulin. I mean, it was like I, I had to navigate, you know, having a child that could barely walk because you know, as I mentioned, she lost 13 pounds, she can barely move. And I had all of this stuff with me.

Scott Benner 28:23
I couldn't bring myself to leave the parking garage to make the 30 minute ride back to the house. We were staying in. Like, and we were in the hospital for five days. We were so scared to leave the hospital. We left the hospital, went downstairs, went right into the cafeteria and had lunch, because I think we didn't want to leave the building. Yeah. And it was terrifying. Yeah. And then you had to get on a plane. But did you? Were you in that like ignorance is bliss thing? Did you not know enough about it to be like, like, properly terrified? Were you just terrified of the big like the specter and not of something specific? Well, I

Barbara 28:59
feel like I had two bad options, right? Because I definitely didn't want to leave the hospital. That's for sure. I mean, it was so uncomfortable. And I barely slept. But I definitely felt safer in the hospital. But remember, we're in Maine. And so my other option was to stay in a hotel overnight with her, or get on a plane and at least be home and have the support of my husband. You know, we know some doctors. So it was like it was almost like what's better, you know, so it was terrifying to be on the plane, but I also didn't want to stay overnight with her in a hotel, if that makes sense.

Scott Benner 29:34
Yeah, no, that trust me, that all makes sense. I'm fascinated by that idea that, that you had to be thrust like it wasn't just a quick ride back to the house. Yeah, you know, that that was really something so you made it obviously. Because yeah, you've made it back. Most of your fears, unfounded, did you have any trouble?

Barbara 29:54
Well, so we have this one crazy thing in that airport. So When my daughter got, you know, transferred to the hospital from canopy center with a backpack, and I didn't really think to look in the backpack before we got to the airport. So as I'm taking her through security, and my daughter sort of goes through security first, we find out that one or she has this water bottle that she really likes, and it's filled. So they made me get out of the security line, and go into the water bottle and then come back. And she was already my newly diagnosed type one daughter's all the way on the other side of the metal detector. And I had to leave her so that was a little bit panic inducing.

Scott Benner 30:39
Did it feel see that's interesting for people to understand like you What did you walk away from her 30 feet, and it felt like you were leaving her in another country? Right?

Barbara 30:48
100% I was just terrified. I,

Scott Benner 30:51
I can relate to that idea. Like, I can't walk away from her. Like I have to stand right here in case something happens that that Yeah, I thought you were gonna say that there was like a fishing knife in her bag or something like that, that you guys were up against the wall.

Barbara 31:05
I mean, the irony of the whole thing, it was a filled water bottle. So like I felt like she needed the water all along in camp when she's getting Gatorade and then ends up having to empty it out at the airport.

Scott Benner 31:19
Finally, we've got the right thing in our hands, and we're dumping it away. But that feeling of like even being separated by feet in that situation? Oh, I definitely know what you're talking about. I have had that, like, I have had that exact thought, like I have to be here like right next to her tech. How long did it take for that feeling to go away? Or has it not?

Barbara 31:38
I know, it's gotten better over time. You know, as we've started to give her more and more independence. I mean, she's 11. Now, I kept her remote this year for school, you know, because it was a new condition because of COVID. We just sort of wanted to get a handle on her blood sugar and having her home was the easiest way to do it. So as we've had her home, and we've been able to manage things better, we've started to give her more and more independence. And also, you know, she has a Dexcom. And that's huge. I feel like she can be feet away from me. And I can see what's going on with her blood sugar and texture if I feel like you know, it's going too high or too low. So that's I mean, that's a game changer.

Scott Benner 32:21
I'm really very new to this, though. It's interesting. Yeah. Is it going anywhere near how you hope?

Barbara 32:30
I mean, we're definitely trending in the right direction. The past couple of doctor's appointments, her hemoglobin a one C has been a 6.70. Good for you. Down from 13 when she was initially diagnosed,

Scott Benner 32:44
that's a nice sleep. I know I it's funny, I feel stupid saying this. But did you have like a focus for coming on? Were you did you? I don't remember. I don't really?

Barbara 32:56
Oh, yeah, I think my you know. It was like sort of twofold. Number one, you know, right before we sent her to Cam, she had a full physical. So when she had a full physical, like, we thought everything was fine. And she was perfectly healthy. And we were able to send her halfway across the country. And literally within a week and a half of being gone. She ended up in the ICU. So my husband and I had this moment of, you know, well, something should have been done in the pediatricians office, like there should be this like universal standard of care where they at least to a finger stick, because they don't really take blood work from children. So unless like you see the signs and symptoms of something going wrong, there's no reason for them to even look at blood work. whereas adults, you know, have physicals every year, and they take blood. So I think I was just I feel like, I would love at some point for pediatric practices to adopt this. You know, just like, easy finger sticks, get a baseline, you know, what's going on with the children because it really would have helped us so much.

Scott Benner 34:19
Did you feel like you paid to rotate your tires before a road tripping out a flat tire anyway? And then 100%? Yeah, and then you felt like, Oh, I did everything I could do and they still didn't? Well, I mean, so I'm not going to disagree with you. And but I would say that I think this might be a thing, that if you wait five years and think back on it, you won't feel similarly. I'm not certain and there's no way for me to like, I mean, we could put on our calendars, I guess and reach out to each other. But I think that when you're first going through a diagnosis in the first year or so, it there is that like there are a lot of feelings that are similar What you just brought up like somebody should do something, there should be a way to this whole thing except they think maybe there isn't. You know, I mean, I don't disagree with you that you could fingerstick every kid on the planet, and maybe you'd catch some of them with a high blood sugar. I'm sure you would. But if you look at that, from the perspective of people who never get diabetes, I bet you hear them say, I don't, you know, I don't want you to finger stick my kid. Like, I wonder how much of that like becomes perspective? Because of what happened to you. But I don't disagree. Like I mean, it's an incredibly, I think, at the very least, when kids come in with flu like symptoms, they should check their blood sugar. Yes, you know, for certain, because they're, you're definitely going to catch some kids and keep them from getting, you know, into decay or deeper into it. But I do know how you feel like, is that a, is that a helpless feeling? Like I don't I like to dig into the psychology of it a little bit like this, like, does it make you feel like, nothing's within your control?

Barbara 36:04
It definitely does. But also, I think I think about it a little bit differently, too, because I feel like you know, sometimes, like in the first year of a diagnosis, you have all this kind of fire underneath you. And you feel like that's when like you want to see changes made. Um, and so it keeps me hopeful in a way. Because I feel like maybe at some point, it will be a standard of care, because you're hearing about more and more type one. diagnoses, someone sent me a study recently as related to COVID that they think COVID might trigger type one.

Scott Benner 36:42
So I do I want to be careful when we say that, because I think what you're going to find is that it's not that COVID gives you type one diabetes is it COVID puts your body in a instruct in a stressful situation. You very likely had the markers for type one diabetes already. And this is the thing that yes, propelled it. I know, and to say, and to say COVID triggers type one is, it's like a headline statement. That absolutely is it's, I understand what you're saying it's true. In content.

Barbara 37:13
It doesn't explain that. Yeah. specific mechanism. Yeah, of course. Yeah,

Scott Benner 37:17
yeah, you don't magically get diabetes, when you get COVID, you are a person who has anybody's markers that are making you making it clear that you are going to get diabetes, at some point, something throws you into that situation, could be anything really

Barbara 37:33
100% And you know, the fact that you know, a hemoglobin a one C, you know, it's a measure of your blood sugar over the past three months, the fact that when they did it in the hospital, and hers was 13, and meant that her sugar had been running high, you know, for a month before she ended up at that point. So, you know, there's there's a certain elements of Oh, my goodness, you know, she was complaining about headaches. And we thought, well, she was spending a lot of time on the screens and wasn't wearing her glasses. So you know,

Scott Benner 38:03
no, yeah. Oh, it's the worst. Listen, the first time in your life, especially attached to your children, that you recognize that we're all on a rock, hurtling through space, and nothing, right? Nothing happens for any reason that that you can figure out like, it's a, it's a hard thing to swallow that, you know, your decisions don't lead to ultimate safety, I guess. Yeah, like, you know what I mean, like you, you get what I mean, I was very careful when I was a kid, I grew up really broke. And I looked around, and I thought I have to establish credit. So I remember getting a credit card to Sears and buying something just so I could pay it off. So that I can start building credit was only like 18 years old. Right? And that made me feel safer. And my home makes me feel safe. But the truth is, if like three ill intended people wanted to get into my house right now. They absolutely could. But I feel safe. And you know, I try to get a house in the nicest neighborhood you can so you can feel safe. So you can feel like you're sending your kids to good schools. And it's all true, right? Until, you know, a meteor crashes into you. And then you realize that none of this had anything to do with you. You were just getting lucky the whole time. Right? I mean, and it's a hard pill to swallow. Like as a as a person who cares about another human being and you're trying to keep them healthy and alive. To realize that something random could happen. I heard someone say recently, I was listening to an interview somewhere. And the man had had a near death experience. And he said that what stuck with him most when it was over was that you could be talking to somebody and an hour later they might not be here anymore, and that there's no way to know that's gonna happen or not happen. And that he found it frightening and freeing at the same time. So I don't know it just made me think of that when you when you were saying that because I completely understand the idea of wanting to create as good Have a situation as you possibly can, and yet not losing sight of the fact that, you know, random things happen. And sometimes people are in the way of it. It's, it's terrible. I mean, don't get me wrong, it's that's not how that's not what should happen. But I mean, for me, I always kind of go back to this feeling of, if you could go find me right as I was getting ready to have my first kid, and you and somebody came, I don't know popped out a space in time and said, Look, you know, you're gonna have two children. And, you know, here are all the health issues that are going to happen for your wife, as you get older for you, as you get older, for your son for your daughter, like, you're gonna have a car accident one day, like, you know, all this stuff is going to happen. You can't stop it. I don't know if I even would have believed it. Because when I was young back then I just thought if I make good decisions I'll put are in good positions and will have good outcomes. But, you know, then a girl hits you in the bumper when you're waiting at a stop sign and you realize she's on a different path than you are. And now suddenly, you're in her way. So I don't know. It's a It's frightening. The whole thing? Do you have your other children too?

Barbara 41:12
Yeah, so I have a younger daughter as well. Okay, so an 11 year old and a nine year old.

Scott Benner 41:20
Do you have concerns about diabetes for them?

Barbara 41:22
Well, so um, I think I heard about it on her podcast, but um, T one D exchange. Um, you know, they have a whole database, but they also offer blood tests. So you can test everybody in your family to see if they have the markers for type one as well. Trial net. Oh, try on that. Sorry. Try

Scott Benner 41:44
that. Okay. Listen, pimp everybody out. That's been on the show. That's fine. Thank you. May I will watch

Barbara 41:50
this. We've been on the pod two and we're obsessed. Bob,

Scott Benner 41:54
do you want to see something that you might find creepy, but a little interesting. Watch this. Yeah. If you just go to T one D exchange.org. Forward slash juicebox. Now and you're a US resident who has type one diabetes, or a US resident who's the caregiver of someone for type one, you can join the T Wendy. Registered T one D exchange registered? Well, it's easier when I can edit it, doesn't it? Hold on a second? The you will be asked a few simple questions. None of them are deeper probing. It's 100% HIPAA compliant, completely anonymous. And your answers will help other people living with type one p one the exchange.org forward slash juicebox it's not bad right. Now. I could do those in my sleep. I love the T one D exchange and what they're doing but try on that is where is that? Yeah, yeah, you can get checked for the marker. So you did it for your, for the other?

Barbara 42:45
Yes. So I did it. Um, and then my husband, I think you can for trial that you have to be 45 under so my husband, he's 52. And so he he did it through I think JDRF offered something to I believe we've all tested. I'm sorry.

Scott Benner 43:06
I know. JDRF is like it cost like 50 bucks and trial. It's free or something like that. Right?

Barbara 43:11
Yeah, but trial that you can only do up until age 45. So we all tested and none of us had the antibodies.

Scott Benner 43:18
Oh, that's cool. Now, I think trial net isn't retesting any more if you get no antibodies. But I think that I they used to I wonder if that's not a financial decision on their part because they're, they're funded by other people. Whereas I guess you can always buy it through the JDRF. The one they're doing Yes, yeah. I think trial that might end up being a sponsor at some point. I feel like I remember having a conversation with them a couple of weeks ago.

Barbara 43:50
Well, if you want me to pimp out on the pod, we actually did the free trial through the Juicebox Podcast. Oh, no.

Scott Benner 43:58
Thank you. Did you get the free no obligation demo? Or did you get the free 30 day trial of the Omnipod dash?

Barbara 44:05
We got the free trial of the Omnipod dash?

Scott Benner 44:09
Oh, you did 30 days? Yes. That's cool. Listen, let's just remind everybody that their advertisers, but this isn't an ad, but I want to know how that went. So you contact them, because I talk about all the time, but I've never done it, obviously you contact them, they get you out 30 days worth of pods a PDM. get you all set up and going to get this app to go through your doctor does it just straight does.

Barbara 44:32
It does because I think they want to make sure you know if you're making that kind of a commitment that you'll be able to continue with it. And initially it wasn't covered by our insurance, but we heard so many positive things about it that we said you know, we'll try it. And then honestly, I think we paid for one month out of pocket and then our insurance decided to cover it. So it worked out.

Scott Benner 44:57
Yeah, that's excellent. No wins on the pod.com forward slash choose people support the podcast. What are you doing? I got a I have bills to pay to. So that's really that's really cool. I love on the pot. I mean there Yeah, sponsors because of how I feel about them. I could have, you know, I'm sure I could have gotten an ad from a different insulin pump. But this is the one that I I've seen a ton of benefit from for Arden. And it's been like a real like, like, genuine like, help to us over God over a decade now. So I'm glad that you got it and that you like it. That's very cool. How do you find the podcast?

Barbara 45:38
Um, oh, so I had heard, I initially found the podcast by the woman, I'm going to give her a huge shout out. But she has type one, just the woman who does my eyebrows of benefit. And I had actually, I brought my I had brought my daughter with me. Um, and we noticed that she was wearing a pump. She had the Medtronic pump. And so I like gently talked to my daughter. And I said, look, look, she has a pump. And so then my, my daughter said to her, I have type one too, and they got into a whole conversation. And I feel like I'm just going to get my eyebrows done more often than I needed to because she was such a great resource. But she was initially the one that told me about the podcast.

Scott Benner 46:27
I love hearing how people find out from each other. That's so so interesting to me. And I and I have this visual of your, your, your brows getting thinner and thinner. And you're like, I hate how my brows look now, but this girl knows so much about diabetes.

Barbara 46:43
Actually, the opposite sort of happened. I actually over time told her to do less than less. And it was more like therapy for me just like sitting there and getting all of her tips something because I think she's in her 30s and has diagnosed in her teens

Scott Benner 46:59
that I'm smiling very big. Such a big smile from that. That's, that's very, very cool. Also, if people are interested, Arden gets her brows threaded. not last. So if you have a threading professional around, you should try it. It's fascinating. Really, really cool. Like just I've ever seen anybody do it.

Barbara 47:20
Yeah, I've had it done before. Okay, um, but I think I can never switch because this is like, I mean, I feel like I learned something every time I go see her and my brows look good.

Scott Benner 47:30
So ask you this. I'm gonna admit this on the podcast. The person who cuts my hair is fine. But I don't love what she does. And I want to switch to another person that the place buy feel too bad to do it.

Barbara 47:45
I think that's a tough one. But I you know, it depends how long they've been working in the business because I feel like they ends up developing a thick skin because it must happen all the time. People think

Scott Benner 47:57
there's this guy in there and I just want to see what he's gonna do with my hair. That's all and I find myself thinking, this is gonna sound crazy. I find myself thinking maybe I can figure out what days my person works and get her and get an appointment on a day when she's not there with the other. You know, I don't borrow, generally speaking don't care about stuff like this at all. And this one thing, like even Arden's like, just tried the other person. I'm like, I can't like she's so nice. I don't know. I don't know how to do it. I feel terrible. I just have to do it. Alright. Yeah, I don't know how we got on this. Like how my brain jumped to this, but I think we're talking about gourmet. No, no, no, I know how we got to it. I'm just like, I don't know why I talking about it now and admitting to everybody that I want to switch hairdressers, but I'm scared to hurt someone's feelings. I really want to this guy looks like he would do such a better job. I don't know why. But anyway, it's not a gender thing. He just seems that. I don't know. I have really great hair. Barb is something you don't know about me needs a pro touch. You know what I mean? Anyway, yeah. Well, so how do you think your daughter's doing? Like, a year into it? Are you pretty comfortable? I mean, the numbers sound great. Sounds like you guys are getting a handle on everything. But I mean, how was she doing personally?

Barbara 49:20
So I, you know, she has her good days, on her bad days. You actually had a podcast recently about mood and blood sugar. And we definitely see that with her, you know, because as like, the pump is relatively new for her. And we're constantly you know, adjusting her doses and stuff. And, you know, like, every I feel like, all the stuff happens in a year, like all the freak technology stuff, like, you know, we put the Dexcom and the Dexcom falls off or like we put the pump on and it's a bad site. So, you know, it's like we're still a huge learning curve. And I feel like that definitely affected her, I would say, you know, she's not ready to deal with it yet. Um, and maybe partially like the trauma of the diagnosis. I mean, she's interested, you know, in one on Bolus thing, her and she, you know, she she asked a lot of questions, but I would say, you know, I'm still like her external pancreas. I'm still, you know, I mean most of it.

Scott Benner 50:25
Yeah, that's not gonna end anytime soon. But no, but so when you say she has good days and bad days, what's an example? Is that an example of her feelings? Or is that an example of things going better, so the day goes better?

Barbara 50:40
I think it's full. You know, sometimes like when her blood sugar's and like, great range all day, she'll say to me, Mom, I'm having a great day, I feel great. Um, and then other days, when it's a little bit higher, she'll say, I don't feel so good. I just feel like I have no energy. There's also, you know, a little bit, and a lot of this, you know, I guess happens in the beginning, where, you know, her sister will eat something like, ridiculously sugary, and she'll say, Well, I can't have that, or, you know, you're gonna have to give me so much insulin for this. So like a little bit of resentment toward her sister that doesn't have type one. Um, but we've been able to get her some help, which I think has been huge. I think it's, you know, it's sort of part of the process of going through this. Yeah,

Scott Benner 51:29
she's talking to somebody. Yes. Yeah. That's good.

Barbara 51:33
I mean, part of it is, you know, the whole trauma of how she was diagnosed, that was huge. So it's like, she had that on top of COVID. You know, and then her diagnosis. So it's, you know, there's a lot

Scott Benner 51:47
do you think when you say, resentment towards her sister, do you think it's towards the person? Or do you think it's towards just anybody who can think it's just because that person's there in front of them?

Barbara 51:58
I think it's because she's there in front of her 100%? Yeah.

Scott Benner 52:02
Do you see it translate to other aspects of life? Or is it mostly around food and accessibility to eating when you want those sorts of things?

Barbara 52:14
I think it's mostly related to that, because, you know, it's always funny, you hear these stories about kids that are like tears at home and the teacher say that they're like, complete joys, you know, I think she like rains it in and all the other areas, but when it comes to her sister, that's sort of when it comes out a

Scott Benner 52:32
lot. Yeah. That Do you think that sisters younger? Right? Yes. Do you think she takes any, like, joy in being able to eat something that your daughter can't?

Barbara 52:45
I mean, she's gonna. And, you know, it's my husband. And I feel like we're sort of trying to find our way a little bit. You know, I'm a registered dietician. So I've always kept like, a super healthy household. But I know that I have girls, and I don't want them to have any issues around food. Um, so it's like this fine line between, like, letting her have things once in a while. But I'm not, you know, like, I feel like you do a very good job of this with Arden, like, you know, you say this a lot in your podcast, like, she wants to go to the movies, and she wants to slushy and she wants, you know, and you just figure out exactly how to correct for it. Um, I feel like my husband and I are trying to navigate the fact that, you know, we keep a super healthy household, maybe because I know too much or, you know, whatever it is, um, and then also trying to allow her to have treats and trying to figure out, you know, how to Bolus for that.

Scott Benner 53:43
Yeah, it's so much less about the food, and so much more about access, and not feeling and not feeling like there's something that exists that you are not, you know, quote unquote, allowed to do. Like, I think that's really the most important but like, in the moment, like the blood sugar, or the food or whatever, you know, that comes and goes, but the idea that I have diabetes, and because of that, there's a thing I can't do, that, to me feels like the most dangerous thing to feel like I feel 100%

Barbara 54:17
And I feel like Yes, and I feel like we're trying, you know, I have this very good friend. She's also a registered dietician. And we used to joke that, you know, more than anyone, we're gonna screw our children up, like, you know, we both have daughters, and it's just going to be one of these things. So I've tried to not make it about that, but there's not you know, even if I don't keep it in the house, like we'll still go out, you know, and have treats and stuff like that. So I don't want her to feel like you know, there's something that she can't eat. And I think we made the mistake in the beginning when she first came home from the hospital and I feel like you've talked about this too, where like, you give all these free snacks you know, so they were like she to this date, like cannot look at a string cheese or a hard boiled bed. And I feel like we back down quite a bit from there. I'm just allowing her to have what she wants still trying to keep it healthy. But just figuring out how to Bolus for it,

Scott Benner 55:12
what sounds to me like you're doing a great job. And to be honest, that anything that you've mentioned so far in this time, it's common stuff that happens to everybody. You know, it can feel so like personal and, and foreign. But the truth is that anyone who has, you know, been diagnosed with type one is going to go through most of the things that you've just said, you know, over this entire time, I mean, aside from the main thing in the plane and stuff like that.

Barbara 55:42
Right. And actually, I have another thing to add to going through this time, please. I might have mentioned this in the email to you, but she's also been in a clinical trial.

Scott Benner 55:52
Okay. Yeah. Which one?

Barbara 55:55
So she's in she's been in the clinical trial for two clues about oh, yes,

Scott Benner 56:02
hold on. I just made a note for myself, because I have a strong feeling that this episode is going to be called playing domain.

Barbara 56:08
Because I have I have such a good name for you for the episode.

Scott Benner 56:11
You have your people coming with titles. I go ahead.

Barbara 56:16
Okay, this will make sense in a little bit. But the title should be Bernice the male owl.

Scott Benner 56:24
You're not in charge of the titles.

Barbara 56:29
Good story about this title

Scott Benner 56:31
bar. There's part of me that thinks that it would be funnier if I did not let you tell the story about why you think that's the title. And we just let people wonder why you think Bernice, the male owl would be a good title for the bus. But tell me first about Oh God, here we go. To miss a blob that I get to write to miss. I can't say it to the mob. The blizzard mob? I have. Yeah. Okay. So she was in that trial, or isn't that trial.

Barbara 56:58
She is currently in the trial. And the way that it works with the trial is that they catch kids within the first six weeks of their type one diagnosis to put them in the trial. So basically, we arrived back from Maine, the end of July. And then she started her first two week drug infusion in September. And because of COVID they couldn't do it here in Chicago. So we had to go to Iowa for two weeks.

Scott Benner 57:29
Oh, I didn't know I was gonna get a bonus of you saying Iowa with your Chicago accent. I thought Chicago

Barbara 57:35
New Yorker comes across. Yeah.

Scott Benner 57:39
Yeah. It's really cool. It's a it's an interesting mix. Hey, this is gonna sound crazy. Do you know how to spell to close them off?

Barbara 57:45
Yes. So if TPL I'm actually writing it LIZAM UB. Oh, no. Is it to poison? I have to don't have to Google this.

Scott Benner 58:02
The reason I'm asking is I'm trying to search my site to tell people the episode where they came on and talked about it because super interesting. And you might want to go look, but it's a word. I can never remember how I found it. It's episode four. Yeah, yeah, it's episode 452. So if you're interested in hearing about the trial hearing about why this trial is so interesting. Take a look. It's it's a really cool they one of the I think one of the dogs. Have you heard the episode? Yesterday, the co founder of prevention bio came on and talked about it and what they're hoping to do with it. It's really cool. But you tell me about it. So she gets an infusion of this drug monthly. Is that right?

Barbara 58:49
No. So she gets to so it's an 18 month study. And she gets two infusions that are each 13 days.

Scott Benner 58:58
Okay. I gotcha. Oh, she goes every day for 13 days.

Barbara 59:03
Yes. Wow. And so it was so interesting, because once she got into the trial, they had to inform us that was no, it was no longer being run in Chicago because of COVID. So that we actually had to go to Iowa. For her to have this drug infusion.

Scott Benner 59:25
And you think it was worthwhile? You happy to?

Barbara 59:30
Um, I don't know, time will tell. And actually, I mean, we have we've sort of been very positive about the whole thing, because she's been remote learning the whole year. It made it very easy to go, she could just bring her computer to the hospital every day. And if you're ever going to participate in a clinical trial, like the best time to do it is when the world is shut down. Gotcha. Um, so, I guess, you know, we'll sort of see what happens but they just informed me that, I guess, because they've had such positive results that they've extended the trial and extra six months. So we'll find out in about a year if it worked.

Scott Benner 1:00:10
And so what's the so first of all, is this a blinded? Like, is it possible? You're not getting the drug? Yes. Okay. And but so what is the hope, like, the hope is

Barbara 1:00:23
that she'll need less insulin over time. That, you know, whatever cells she has in her pancreas, so they catch the kids in their honeymoon phase, when there are certain cells in the pancreas that are still producing insulin. And I think it works like, you know, by two mechanisms, either it helps to regenerate some of the cells that have died, or the cells that are still there, it helps to kind of like pump them up so that they still continue to produce insulin.

Scott Benner 1:00:52
It's very, very interesting. Well, I hope you got the drug, and I hope it does. What they're what they're aiming for, for you. That's really something Jade your daughter's a trooper for for doing that, too.

Barbara 1:01:04
Yes. And you know, she has a really good attitude. She said that, even if it's not helping her, which, you know, we're not so sure that she feels like it will help other kids eventually. So, you know,

Scott Benner 1:01:20
that is very sweet of her. thank her. Thank her for me. Yes, I will. Alright, Barb, we're gonna end here. But I don't know. Tell me about the hour, I guess. Let's go. Okay.

Barbara 1:01:31
So, you know, so when she was first diagnosed, I got a lot of advice from people about, you know, like things like, you know, crying a shower, you know, just to kind of find somebody to talk to. And I feel like because she was diagnosed, and then we did this clinical trial, it was kind of like, go, go go. And so I didn't really have time to like, process all of the emotions of it. But so she had her second drug infusion for to play them out in March. And we were back in Iowa. And my husband and my younger daughter came to visit and my younger daughter has this owl. And she said, you know, from when she's three years old, that the owl, it's Bernice, but it's a male owl. She's just for whatever reason, she's always said this. So it's a little joke in our family. Well, when we were on our way, back from Iowa, it was like, we felt kind of like the sense of relief that she was done with, you know, the second round of her transfusion, we get home. And then we realize that my younger daughter has left the owl in the hotel. And so I, I lost it, it was like a year's worth of emotions. Like I just It all came out. And so we call the hotel and I you know, warn my daughter that the owl might not be there because of COVID. You know, like they probably anything that they find in the rooms they have to get rid of. And she's hysterical and hyperventilating, loves this owl has had this Alison, she's three. And I got this really nice young woman at the front desk. And she said that she knows what it's like, you know, to have a lovey, and she will check the rooms and she promises if she finds it, she will send my daughter like is telling you that she will not go to sleep unless I drive back to Iowa and go get the owl. I mean, it was really it was like, I just felt like it was this. It was like the Holy Year. You know, like I'm sure everybody has sort of felt this way the COVID. But it was like COVID, the diagnosis, that clinical trial just kind of everything at once Well anyway, the woman found the owl, and we're getting ready to go on spring break. And she ended up sending the owl to the hotel that we were staying at in Las Vegas, and the owl arrived in a FedEx package. And then my daughter opened owl and just started to cry just completely lost it. But anyway, when I was thinking about the podcast, I was like that just kind of sums up our year like this, you know? Tremendous amounts of emotion and

Scott Benner 1:04:13
yeah, did you feel like did you feel like, I couldn't stop diabetes, and I might not be able to do a lot of things, but I'm not losing this owl. Is that like

Barbara 1:04:22
100%? I mean, you have no idea what links I went to to get the owl like this young girl who worked in the hotel. She was new to the job so she didn't even know how to FedEx him. So my sister said to me, oh, but I'm sure if she's a young girl, she has a Venmo account, just like send her some money and tell her you know you'll get her a FedEx number you know, so I felt like I am going to have this owl sent and that out and I even let them know at the hotel in Las Vegas that they were expecting a FedEx from us.

Scott Benner 1:04:56
Control Stop that Meteor from hitting you Did you Did You got in front of that one? Exactly the whole time you were talking. I just was waiting for you to mention a person. So I could say who? And then it didn't work out. I feel like down like, a stupid joke. Well, I'm I'm glad you got Bernice back. And yeah, but I think that I think that more importantly, right like, it's, it's a good example of how out of control, like diabetes can make you feel like, really that you just did I mean that that became so important. Like, I get that it's important to your daughter. Right. But that, but that that became so, so important, I think is a good example of needing to feel like you're ordering things, you know, you know, something, something's going your way. I'm glad that I'm glad that it went went your way and that your daughter got her owl back. So now I'm assuming she holds it while she's mocking your other daughter with food.

Barbara 1:05:56
It sits in the kitchen.

Scott Benner 1:05:58
Oh, my God, that's something Well, I really appreciate you doing this. Did you? Did you like talking? Did it meet your expectations? I think you were pretty excited to come on. So I didn't work out. Yes.

Barbara 1:06:09
I mean, I really feel like this has been such a great resource for us, like we get excited for when your episodes come out. We've tried a bunch of things that you've discussed, we actually tried, like you had a whole episode on the Warsaw method, which we've tried with my daughter, I feel like it's just made such a huge difference in our lives. So thank you for that.

Scott Benner 1:06:30
You're welcome to you know, I'll say this to you here because your episode will go up so far in the future. I think I can get away with this. But I have a meeting tonight about turning that Warsaw method into an app so that people can just have it on their phone to figure out the fat for the food.

Barbara 1:06:46
Oh, it's amazing. Yeah, I mean, I feel like it takes like, you know, it's like bringing back like, I don't know, math from college or something. You know, it's such like a mental game.

Scott Benner 1:06:58
Try to try to imagine maybe having a little app on your phone that you can just plug in the fat and everything. And it'll just, it'll help you get to that answer. So I'm gonna try. I have an app developer calling me tonight. We're going to try to figure that out. That's amazing. Cool. So well, I am super happy that you did this. And I am glad you found the podcast and that things are going well for you guys. I appreciate you. Please tell your daughter, I really appreciate her doing a trial, like anybody who does trials or are just helping everyone. So it's a really, it's a really big deal because I know it's not easy. And it takes up can take up time some of them so very cool.

Barbara 1:07:38
Thank you so much.

Scott Benner 1:07:48
I want to thank you so much for listening, and remind you to check out touched by type one.org. Find them also on Facebook and Instagram and go see what they're doing and what they're all about touched by type one. I want to thank Barb for coming on the show and sharing her story. Her story. Her story story. I want to thank Barb for coming on the show and let me get a drink. Hold on. I want to thank Barb for coming on the show and sharing her story. There we go. Oh, that was easy, huh? And thank you of course for listening. I'll be back soon with another episode of The Juicebox Podcast.