#1569 Nervous, Not Nervous

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.

Kelcie, a Pacific Northwest therapist and mom of three, shares life with her youngest’s type 1 diabetes diagnosis.

+ 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
Welcome back, friends. You are listening to the Juicebox Podcast.

Kelsey 0:14
Hi, my name is Kelsey. I am a licensed mental health therapist and mom of three, and my youngest kiddo has type one diabetes.

Scott Benner 0:27
If your loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox Podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one, our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juicebox Podcast, the bold beginning series and all of the collections in the Juicebox Podcast are available in your audio app and at Juicebox podcast.com in the menu. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise. Always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin.

The show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year, and is the most accurate CGM in the low range that you can get ever since cgm.com/juicebox this episode of The Juicebox Podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes, when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox of my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox this episode of The Juicebox Podcast is sponsored by us. Med, us, med.com/juicebox, or call 888-721-1514, get your supplies the same way we do from us. Med, hi.

Kelsey 2:32
My name is Kelsey. I am a licensed mental health therapist and mom of three, and my youngest kiddo has type one diabetes. Kelsey,

Scott Benner 2:43
thank you for coming and doing this. Appreciate it absolutely before we start recording. You told me this is outside of your comfort zone. Yes, very much. So I did the same thing I do with everyone who records. I say, you know, just gather yourself. Sometimes I joke. I say, talk to Jesus, whatever you want to do, and then introduce yourself. I've never thought to ask somebody in that gap of time between when I finish talking and when you introduce yourself. What are you thinking about? Because people take a longer time than I expect. Usually. Do you have any idea? Was there anything going through your head?

Kelsey 3:15
You know, not a lot. I think I was waiting for some like ding or sign that it was recording. So I was kind of waiting, you know, my heart rate is pretty fast right now, so I was kind of trying to manage that. And then, yeah, in the back, I was probably thinking, why am I doing this? Because this is, this is really outside of something I would typically do. So okay, I wouldn't say I'm, I'm regretful of doing it, but I'm just like wondering a little bit. What you know, what prompted me to do this today? This is

Scott Benner 3:44
starting to feel like some of my early dates when I was younger, like, I like, I don't think she means to be here. So let's figure out why you said yes. Did I reach to you? Or did you reach to me?

Kelsey 3:54
I reached out to you. The reason this is so uncomfortable for or, yeah, uncomfortable for me is not because I'm nervous to talk with you or speak with you, but because it's like added attention. I have a lot of discomfort around having attention and knowing this is something other people will be listening to. So that's what's uncomfortable about, about the situation, to the point that nobody knows I'm even doing this today, which is, is kind of funny. I realize that I will tell everyone after I do it, but if anyone in my world knew I was recording a podcast with you today, it would, it would probably blow their minds.

Scott Benner 4:29
No kidding, spouses, kids, uh, co workers, no, you've not mentioned to anybody when I

Kelsey 4:35
initially reached out to you, it's been, it's probably been six months, and so I think I told my husband, like, hey, like, I sent an email, and he sent me a link to schedule, so I think I might do it, and that was the end of it, and then I never talked

Scott Benner 4:49
about it again. How long have you been married? Greater than 12 years. I've been together

Kelsey 4:52
10 years, 10 years, but we've only been married seven years. Okay,

Scott Benner 4:57
all right. I'm just trying to figure out where the line is. Where. Sure where the husband doesn't ask a follow up question a couple days later.

Kelsey 5:05
Yeah, yeah. That probably speaks more to his What do you say? His temperament, like him doing a podcast is no big deal. He wouldn't think so. Okay, yeah, he's like, he would jump on anyone's random podcast and have a conversation and it wouldn't. He wouldn't bat an eye.

Scott Benner 5:20
So are you very different, generally speaking, yes, yeah. Do you use him to, like, prop up a part of you that you can't figure out on your own and vice versa? Do you think?

Kelsey 5:31
Yes, absolutely. So he is very laid back to the point of, like, being late for things or missing appointments. So I add that, that element of like, Hey, we got schedules. We got to do things. We got to get things done. We keep track of things. And he definitely helps me to take a step back and see the big picture and not get so worked up about certain things. And so, as frustrating as it can be sometimes, I think, you know, if we're going to focus on the topic of diabetes, like, it is a pretty good partnership, okay, when it comes to to that balance, but we absolutely frustrate each other at other times as well, because we're very different. Oh

Scott Benner 6:08
my gosh, I love watching my wife look like, why is he thinking, doing, saying any of that? And then she says something, and I think, why? I don't understand. And then the kids are interesting, because my son's like my wife, and my daughter's like me, so like we'll be talking, and you can, you can know whose eyes are going to go to who first, because everyone's like, can you believe this? But I do think it balances things anyway, it does. Three children, how old?

Kelsey 6:32
So my oldest is 12. She'll be 13 here soon, and then I have a five year old who's almost six, and my youngest is three, and he'll be four the end

Scott Benner 6:41
of June, okay? And they're all with this gentleman. We were just talking about

Kelsey 6:45
my younger two. My oldest is actually adopted. Oh, so, yeah.

Scott Benner 6:49
Oh, and you adopted him, him. Sorry, her, her daughter. Sorry, you adopted her once you were married, actually.

Kelsey 6:57
So it's kind of interesting story. She came she's adopted from a family member, so a cousin of mine, and she came to live with me when I was still a single person at the age of 26 and ended up turning into an adoption. I met my husband a year after that, so she was actually there first. Well,

Scott Benner 7:15
you were doing a kind thing for somebody very nice. Okay, good for you. So which one has

Kelsey 7:21
diabetes, my youngest, my almost four year

Scott Benner 7:24
old, almost four? How long ago was the diagnosis? So

Kelsey 7:27
he was diagnosed at two and a half. So right before Christmas, in 2022,

Scott Benner 7:33
2023, okay, right before Christmas?

Kelsey 7:36
Yes, yeah, which was a kind of a trip in and of itself, like, same, I don't think our, you know, our diagnosis story, I don't think is anything super unique after listening to your podcast for so long in terms of, like, how we figured it out and going to the hospital. But being in the hospital around Christmas time was, you know, it was really hard, because it was Christmas season, right? We had to leave our other two children for a while. But being in the hospital was like so entertaining for my son, right? They had carolers coming in and police dogs dressed up in Christmas costumes that paraded around. And Santa came to visit, and he had his own little Christmas tree. He got to decorate. And it was just like constant celebration for the few days that we were there, which was exhausting as a parent trying to figure out diabetes, but also, like a really magical time to be in a children's hospital, which sounds strange, we were discharged on the 23rd so right before, okay, and we celebrate Christmas, so right before Christmas time,

Scott Benner 8:31
and then home to get all that and then try to salvage it for all for everybody,

Kelsey 8:35
yeah, so home to try to act like everything is normal for our other two, and we have a ton of family. So we end up we had three Christmases that year, and so we got home the evening of the 23rd and we had Christmas celebrations the next day. Wow, gosh, there's a crash Crash Course and how to manage a toddler with diabetes.

Scott Benner 8:56
No kidding. Also, I think that people have come on and told stories like DK on a plane, they've ruined it for everybody else, you know. Like, yeah, there was DK on a speedboat, on a plane. They're like, I don't know. Like, they, you know, we, you and I talked earlier. You said you like, a lot of the after dark stuff. And there's that one where the girl's like, she's on a bender trying to find heroin when she's diagnosed. And people like, I don't know, I peed a lot, and I'm sorry my stories

Kelsey 9:22
was pee in his bed and drinking a lot of water, and I took him in and, you know, yeah, pretty, pretty standard story there.

Scott Benner 9:29
You saw it quickly as diabetes, or you saw it as an issue. Well,

Kelsey 9:32
thankfully, my mom is a retired nurse. You know, I can sit now and look back and see for like, six or eight months beforehand, I can now see very clear signs that, you know, something was going on long before, like, concerning symptoms. It was like night and day. Like, one day he was kind of fussy, and, you know, not himself, and the next day, I think, he drank eight bottles of water. And it happened to be a day my mom was watching him, and she's a nurse, and she just was kind of like, hey, he drank a lot of water today. Yeah. Like, too much water. You should really watch that. That's a sign of diabetes. And I was like, okay, you know, my kid's great at drinking water. He probably has a cold. He's well hydrated. He was eating a ton, you know, all the same things that parents say. Like, I felt like, Oh, he's, you know, he's probably just two and a half, and going through something, some sort of growth spurt, or a cold, um, so I waited that week, I kind of watched him for, I don't know, four or five days, and he did. He was just peeing and drinking, not as much as that first day, but just drinking a lot of water and just not acting like himself. So I took him in still thinking like doubt, it's diabetes. We have zero history of diabetes in our family. And thankfully, the doctor took me really seriously, and she did, you know, she did all the like COVID and flu and standard testing that day, and then called and said, those are all negative. Come back first thing in the morning, we'll do a blood test. And did the blood test, and a few hours later, called and said, like, he needs to go to the hospital. He has type one diabetes. Do you

Scott Benner 10:58
have any resistance? I don't know what your mom and your relationships like, but did you have any resistance that it was coming from your mom?

Kelsey 11:04
No, no, no. I have a great Nope. I'm always looking to her for those answers. And she's pretty level headed in terms of, almost, like, if she's saying something's concerning, I know that it's definitely concerning because she's she's not an overreactor. She's kind of like my husband, she's very laid back and calm, and so the fact that she said that definitely had me watching closer. Where

Scott Benner 11:27
do you get it from? Then your dad, the worry, yes, yeah, yeah, that's interesting. Just because, like, yeah, I just thought, like, it's interesting that she, she just saw drinking one time was like, that's a sign of diabetes, and you seemed okay with it, like, that's, I was trying to figure out, like, how that all works, but that's, it's pretty interesting. So, okay, so diagnosed, very young, obviously, you know, coming home right before the holiday. Are you coming home with any kind of technology at all? Or is it needles, pens? What do they give you?

Kelsey 11:56
Yeah, so I feel like listening to a lot of the other stories. I feel very fortunate at the team that we had at the Children's Hospital. They set us up really well. We left with a g7 he got it like the second day we were in the hospital, and we were doing MDI, which I had actually kind of already started asking about pumps. And again, with the the worry and the anxiety, I was already like full force digging in and trying to find all, you know, all the answers and resources. And, you know, while we were still in the hospital, and they had said, like, no, we want you to go home doing MDI, you know, for at least a little while. And I can look back now and say, I'm glad they did that at the time. I think I was really frustrated that they had us do that for for a little while. But yeah, we left with the g7 and doing MDI for six or eight

Scott Benner 12:43
weeks. What do you think you got out of it? The experience doing the injections, I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using us Med, you can too us, med.com/juicebox, or call 888-721-1514, to get your free benefits, check us med has served over 1 million people living with diabetes since 1996 they carry everything you need, from CGM to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, libre three, Dexcom, g7 and pumps like Omnipod five, Omnipod tandem, and most recently, the eyelet pump from beta bionics, the stuff you're looking for, they have it at us. Med, 888-721-1514, or go to us, med comm slash juice box to get started now use my link to support the podcast that's us, med comm slash juice box, or call 888-721-1514, this episode of the juice box podcast is sponsored by ever since 365 and just As the name says it lasts for a full year. Imagine for a second a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off. That may seem too good to be true, but I'm not even done telling you about it, yet, the Eversense 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste the sensor or go through another warm up period. The app works with iOS and Android, even Apple Watch you can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at ever since cgm.com/juicebox, one year, one. CGM,

Kelsey 15:01
I think just the confidence that I could do that if I needed to, and that I can do the math that it takes to do it. And I think, yeah, I think it just set a really good foundation and confidence for us just to start out that way. Thankfully, they didn't make us do it very long.

Scott Benner 15:15
Yeah, I was gonna say only six, eight weeks. And then they let you have a pump or a pen.

Kelsey 15:20
We went to a pump, and I that's one of the things I really think that this podcast helped, is I went in feeling so informed, right? Like, I learned the terms Bolus and basal from this podcast, not from our team or our medical team. They didn't use those, and I think it was intentional. They were trying to, like, slowly drip information to us. But I went in like, very well informed. And I think I was able to advocate, like they usually had people go and attend these pump classes to learn about all the different pumps and then make a decision. And I was just kind of like, No, this is what I want. I know I want it. And so at our first follow up, I asked to have that Omnipod prescription sent in and to kind of initiate that right away. And I never actually went to the to the pump classes

Scott Benner 16:05
at all. That's awesome. And no resistance from them. They were just okay,

Kelsey 16:09
yeah, and I think they were okay because our management, probably, because I'm a little neurotic, was pretty good, and so we were pretty on top of things. And yeah, no, they've, they've been really good to say, if we want to try something, like, Absolutely, you guys can try that and see how it

Scott Benner 16:26
goes. That's awesome. You have a bit in your note here about, like, rural living. Like, are you like, outside of a city, or, oh, yeah, like, is it a small, a small hospital?

Kelsey 16:36
There's some sort of classification that it could actually be considered frontier where we live. It's, it's extremely rural. So we live in the, let's see, I live in the biggest town in the county, and our population is about 6000 Wow. And the closest Children Hospital is about three hours away, wow. And, yeah. So we're, we're very rural, where we're at in very like, low socioeconomic status and low resourced and it's a like, there's lots of people who live off grid where I'm at and travel, you know, an hour just to get to a clinic, not because of traffic, but because they're they're literally 50 or 60 miles away from the closest clinic.

Scott Benner 17:19
It's an hour at 60 miles an hour, yes, yeah, yeah. You born there? Did you move there? I

Kelsey 17:26
was born here. Yeah. So I, I come from a family of apple orchard farmers, and we grew up here, and my husband and I both said we'll never come back. And we both ended up coming back, and now we can't seem to leave. So we're kind of no kidding. We're kind of here. You

Scott Benner 17:42
went away to college and you thought like, this is like, did you meet him in at home or at school?

Kelsey 17:47
We went to school together growing up, but we did not get together until after I was done with graduate school. So we both ended up for different reasons back here, I was here to try to get my student loans paid off. When you work rurally in a healthcare setting, the you can get some some loan repayment programs, which was incredibly helpful. So my goal was to come back until those were paid off, and then leave. But then we started having kids, and our parents live here, and it's really hard to leave when you have built in support like that, the

Scott Benner 18:15
family member that you helped, who's now you know your adopted child, like you said, 26 so were you like, just getting out of school, being done school? When that happened?

Kelsey 18:24
Yeah, so I had just moved back to start. I got my masters in marriage and family therapy, and had moved back to work at a rural healthcare setting here in in my hometown, again, mainly to try to get my loans repaid. And so I was back here, and it just, it was an an opportunity that came about where her biological mother, so, where we live, there's a larger city a couple hours away, and sometimes people who need space for like jail space will come and they'll be put in our local jail. And her biological mother had happened to to have that happen, and had called me to drive her home. And so I had just kind of said, like, I know you're struggling, if you need help with this kiddo, like, I'm here for you. And shockingly, she was like, Yeah, that would actually be really great. I am having a really hard time. And she she had reached out to my sister years ago when, when this child was an infant, and gotten some help as well. And it just kind of, it just kind of snowballed from there where, you know, unfortunately, she didn't do the things she needed to do to then be able to have this child back in her care. And after a few years, we just went through the adoption process to make it, to make it a forever situation.

Scott Benner 19:37
Well, it's lovely. I mean, honestly though, like, I'm kind of mesmerized by it, because you were really young, it's a big thing to do. Like, why do you think you were so open to it?

Kelsey 19:45
I don't know. It just, it just seemed like it made sense, okay. I think I saw an opening too, with this, with this person, with her biological mom, she was willing to seek that help, and to do, I mean, to do something really hard, right? To to be okay, to. Or to be able to acknowledge that you're not okay enough that your your child needs to go live somewhere else, and to make that choice before the choice was made for her, right? I think it just was a window of opportunity, and it there was court, and there was a lot of other things that that took place

Scott Benner 20:14
with it, but I was gonna say it was pretty selfless of her to to proactively do that? Yeah? I think so, yeah, that vibe of like, I'm gonna put I'm saying you though, like, you know, if you came to me when you were 20, when you were I was 26 and said, Hey, can you take my kid? I'd be like, Ah, you got the wrong guy. So are you like, a caregiver at heart? Do you think, like, is that your vibe in general? Yes, very much. So okay, so did the diabetes thing come easy to you then, meaning, like, did you not fight the fact that you had to do the stuff Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a 1c on this podcast, did you know that the Omnipod five was shown to lower a 1c that's right. Omnipod five is a tube, free, automated insulin delivery system, and it was shown to significantly improve a 1c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod every day since she was four. It has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod five for yourself or your family, use my link now to get started omnipod.com/juicebox get that free. Omnipod five Starter Kit today, Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox

Kelsey 21:42
you know, it came easy in the sense that, like, it is my natural inclination. Like, if there's something that needs to be done, I'll just do it, right? So, like, I could lean heavily into it and figure it out, and like, I had the confidence that I could, I could do it. But it wasn't easy in the sense of, like, it really ignited a lot of anxiety for me, and a lot of I don't, I wouldn't say depression, but just like, there wasn't a major adjustment period of just sadness and grief around it, but in terms of, like, my confidence in being like, I felt like, yeah, I can do this. But a lot of feelings around I don't want to do this, and I'm really sad I have to do this. And diabetes is terrible if you struggle with any sort of anxiety, because there's just, there's so many unknowns, and there's no control, and it's different every day. And that took me a long time to and still, I still struggle with it, the anxiety piece of of diabetes,

Scott Benner 22:35
really. So it's been, what, a year and a half now, maybe not even Okay, about a year and a half, okay. And you have anxiety around it still. Yes, okay. So before I talk to you about that, let me ask you about the process of learning how to manage things, so like the nuts and bolts stuff. Like, when did you feel like, Oh, I really understand this. How long ago was that,

Kelsey 22:58
I think, last fall, so maybe around, like, the eight or nine month mark, and then, for sure, by the one year, I think it's almost like, as I got to that one year mark, every thing I could say, well, last year it looked like this, and this year now it looks like now it looks like this. I know what I'm doing. That has been really helpful. But I think right before the one year mark, I started feeling like, like, I know what I'm doing, yeah.

Scott Benner 23:21
How did you get to that? Like, what was the process of, you know, beginning where you started, and getting to where you are now?

Kelsey 23:27
Partially this podcast, right? Like, being bold with insulin and being willing to, like, try different things. And that was really helpful. Starting every day new is really helpful. Like, I pretty naturally wake up that every day is a new day. And I think that's really helpful with diabetes and in trying those kind of things. And I may be off topic, actually, from what you asked, but I think, like, the acceptance piece of like, this is what diabetes is, and there's going to be good days and not so good days, but yeah, in terms of trying to figure it all out, it's a lot of trial and error, and then, like, even, like, faking confidence and knowing what I'm doing right? Like, you say a lot about, like, trusting that you know what you know is going to happen, right? I really have to put that into practice a lot, because I'll second guess things. And so really feeling like, I you know what I know is going to happen is actually going to happen, yeah. And then just going, going with that, like, Yep, I'm gonna give him this dose, because this is what I know is gonna happen, and if it doesn't happen, I'll switch gears. It's

Scott Benner 24:28
strange for me to hear you talk about it, because I feel like, if I were to start a t shirt line for things, I've said, you said a lot of them out loud, and it's, it's weird. It's weird because as you're saying it, in my mind, I'm thinking, is she saying that like she felt like this already and then she heard me say it and helped? Or did she hear me say it and then go, oh, that's a great idea. Like, I don't know how to take I'm trying to figure out, like, what your path was, without assuming that it was me. Or, do you know what I mean, like, but I'm trying to it's funny that you said second wake up every day. Like. Like, it's a new day. Because I think that's really, really important, and I think it can get overlooked quite easily, you know, like just dragging yesterday's baggage into today. It's a recipe for today going poorly as well. I think that's really, it's really important.

Kelsey 25:16
In your first question, I think it's a combination some of the things you've said, have I've taken those and others, I think I was already feeling them or doing them, and you you help put words to them or describe them in a way that was really helpful. So I think even like waking up, that's when I heard, actually, recently on your podcast, is waking up fresh, you know, with every day is a new day, and realizing, like, oh, that's what I do, right? That's why That's why that's so helpful, is I do wake up and every day I'm optimistic that today is going to be better than yesterday, or that, you know, today is going to run more smoothly, or so. Yeah, I think it's a combination of new things. One of the biggest things early on, my husband doesn't listen to podcasts with me because we have very different podcast interests. He did listen to a few early on, our trips to the Children's Hospital, and you gave an example of, like, when there's not enough insulin, that it's like sand blasting right the inside of your child. And that stuck with both of us, like, in terms of that motivation to say, you know, because our doctors do say it's okay if he runs a little bit higher. Like, you guys don't need to worry about that. And that has stuck with us as saying, like, no, it does matter, right? Like, so just little things like that that you say on your podcast and give, like a visual, or the tug of war, or, I think things that I don't know it just it makes them more relatable or more present, that then we can put it into practice. But I think it is really helpful the way that you you find ways to phrase things.

Scott Benner 26:45
Appreciate knowing that. Thank you. So listen, if you start explaining to somebody that when they're 60, they have a heart attack because their blood sugar was high for a certain amount of years, and you know, the walls of their arteries and veins and blah, blah, blah, rub thin, and then we're patched over by plaque, and then, you know, eventually they burst open, and that's how you have a stroke or a heart attack. Like nobody wants to hear that, like the enemy, like it's not a thing people are gonna like. I think it just washes over people, I guess is what I'm saying. When someone told it to me all that time ago, I found it difficult to try to focus on the future from today. How am I supposed to see a high blood sugar in a five year old and think about when she's 30? It's too abstract, you know? So one day, I mean, honestly, like, one day, I just thought of it that way. I just thought, oh, like she's being, like, sandblasted from the inside out, like it's rubbing right, like it's, there's more there's more glucose there, and it's, probably, it's coarse, like, molecularly, and it rubs and it makes a hole, and then, you know, it's funny, because I thought of it that way, like it rubs and it makes a hole, and then you have a problem, which is how it happens. Except there is another step in between, that, until I met Jenny, I didn't have words for either, you know. And she said, Well, don't forget that those holes get like your body does a good job of fixing them, except that while it's fixing them, it's narrowing the pathway that the blood's moving through. And I was like, Oh, well, there's another piece. There were years in between me having that first thought and that second thought, because I don't know what the hell I'm talking about either. Like I'm I mean, if you really are listening to the podcast, right, you're listening to me figure out diabetes, and then I share back with you the stuff that I found valuable. That's pretty much it, you know. And now and now, the conversations have helped me maybe learn more about how people are, so that hopefully I can adapt the stuff that's in my head or in the podcast more meaningfully to how people think or what they need, is, What's my goal?

Kelsey 28:45
You allowing us to see your like, your learning process, I think, in and of itself, is very helpful, even if it's not like directly, like teaching the people who are listening. We get to we get to watch. You also learn through that process. And for human beings, that's really helpful for a lot of people, is just to be able to kind of be with you through that learning process. And so I think you learning and like, stumbling and figuring it out is also very helpful.

Scott Benner 29:13
Yeah, I didn't know that when I started. I do understand that now, but I when I started, I just thought, like, Oh, I know stuff. I'll say it out loud, then people will remember it and they'll do it. But wow, that's not really how it works. So, yeah, it's, it's really interesting to hear you talk about. I appreciate that. Thank you. So, okay, so you figure things out. You know, you get your pump because, you know, you seem, you seem somewhere between knowledgeable, confident and just neurotic enough to make sure it works. So they help you. Yes, they're like, she'll do it. Don't worry. You head in that direction. I mean, there's a lot of growth in there. I would imagine, like, baby's probably gotten a lot bigger in the last couple of years. So things are changing constantly, and you're able to keep up with the changes. So you're making your own adjustments to Settings too.

Kelsey 29:57
Yes, I am. Now we. And out of the gate. And I don't, I will never know this for sure, but I we were asked to be in the limited market release for the the Omnipod five and g7 so I actually have never, I know how to use it in manual mode. We use it in manual mode for two weeks before we were in this market release. And so again, we've been really fortunate that we had a g7 right when we left and then went into this like, you know, looped system, I guess is what you would say. This like automated system, right, relatively quickly. And I feel like they asked us to be in this group. I don't know if this is true, but because of what I had learned from this podcast, and being able to go in so informed and knowledgeable, and so I don't know if that's true, but I relate it to the podcast that we were able to get into that relatively quickly and start that. And it was such a game changer to go from our smallest dose with our, you know, two and a half year old, being a half a unit on MDI, to, you know, point 05, units was a complete game changer for us, and to dose him as he's running around playing so that we can pre bowl us easier, like all of that, having a pump was just like such a huge shift right away. Yeah, not that I have always felt confident to make my own adjustments like I don't. I've never felt like I needed permission to I worked in healthcare, like I said, rural healthcare, and so I learned a lot about advocating for, you know, myself, or patients needing to advocate for themselves, and then a lot about like, limitations of medical providers, right? Like they are only human, and so the need to do a lot of, you know, some of the work on on our own. So I never felt like I had to ask permission to change pump settings for my son or anything like that. I think even somewhat recently in the last few months, I tended to not use, like, utilize the pump settings as much as I could. So I would like, make adjustments manually myself. And finally, the diabetic educators were like, like, seriously, you're working too hard. Let the let the pump work harder for you. Like, let the pump, like, change the setting on the pump. Don't try to, like, manually adjust the insulin yourself. If that makes

Scott Benner 32:06
sense. Do you think they were right, or do you think that it was necessary? I

Kelsey 32:10
think both. I think there's still times where I manually have to do it, especially with the Omnipod five, in terms of, like, managing highs. I don't think it catches highs the way that I would like it to. So sometimes I will manually do it, but I think I was under utilizing pump settings Okay, and not really understanding how I could change those pump settings to make a bigger difference in my day to day, or like nighttime lows or things like

Scott Benner 32:35
that. Going back a little bit to what you said a moment ago, I want to make sure I understand you were a good candidate because of your understanding of how how things work, so that your doctor's office opened up this opportunity for you for the limited market release for Omnipod five. Is that? Right? Yes, yeah, no, that's Yeah. That makes a, I mean, it makes a lot of sense to me, because they're probably, they're looking for people, but they want people who are not going to be overwhelmed or, you know, or just starting, but at the same time, it's interesting, because at the same time you are really just starting, like, with a pump, but you gave off enough confidence that they were like, Oh, she can handle it. That must have felt good. No,

Kelsey 33:17
it felt very good. Yeah, absolutely, very appreciative, and really good to be able to get started in something like that. And yeah, just appreciative for the knowledge. I mean, when we went home, we left the hospital being told, if he he can eat, you need to dose him insulin within 30 to 60 minutes after eating, is when we left the hospital. And I think by our first follow up, I was already starting to Pre Bolus him, like, on my on my own, and that took a while to build that confidence with a toddler, right? Because I didn't, I didn't understand insulin when we first came home. I didn't understand like, Oh, I could just catch him with something if he didn't eat all of his food. I felt like, if I dose him, he's got to eat everything. And I just didn't, I didn't get it for a while. Yeah, yeah. So I, I attribute that to going in and kind of saying, like, Hey, this is already what we're doing. I think it saved us a ton of time with the educators and with attending those classes and where they were kind of like, yeah, you can just kind of move to this next, this next stage. How did you find the podcast? Yeah, it's kind of not a weird story. But we had a through our insurance. We had a case manager call us, like, a few days after we were discharged. I really struggled for like, several months. Like, I look back and I don't even think I formed a ton of memories because my stress level was so high. But she called, and I was like, in this blur of, you know, Christmas and managing this this kid, and not understanding diabetes, and she was like, oh, I want to offer you, like, help and support, I already felt like I had like, a gazillion appointments and people calling me that she was lovely, and she said, Hey, there's this dad who did a podcast, because when his kid was diagnosed, I don't know a lot about it, but it's called the Juicebox, or Juicebox something, maybe that would be helpful. And I was like, yeah, yeah. Like, I don't have time for this kind of thing. Like, very sweet, but I'm like, I don't, I don't need this. Like. Don't even have time to be on the phone right now. My kids alarms are

Scott Benner 35:02
going off. Yeah, I'm in the middle of a breakdown here. Lady, okay, like, like, I am

Kelsey 35:06
mentally unstable. I don't have time for this phone call. So, and I'm not, I wasn't a big podcaster at the time. I'm not always a, like, a big audio listener, um, but I just, I was pretty desperate, and I felt like I just needed more information, like when we were discharged, it was the holidays, so I couldn't even get a hold of our care providers. I had to call a call center and talk to a nurse who would then take my info and call an on call Doctor Who would maybe get back to me in an hour or not. Like it was I felt very alone in it when we first the first couple of weeks, because it was the holidays, and I don't know anyone with type one diabetes, really, I just, I felt desperate, and so I was like, I'm gonna listen to this podcast. And yeah, it was just really, I was like, what, like, what is bull? It wasn't even saying, yeah, it was just really helpful. And I could really, like, front load information and get a little obsessive about it, which is very much my personality style,

Scott Benner 36:00
that was my vibe. Anyway, Scott, I was looking to obsess about something. I needed 1000

Kelsey 36:04
episodes on some podcast to just start like going through

Scott Benner 36:08
you know, it's funny, because I'm not surprised that you have to be desperate to try it, and I am disappointed that that's the case, because, and you're I believe your story really outlines why. Because you went from I don't know what I'm doing, I'm having a I'm having trouble here, you know, both with this diabetes and my personal thoughts and everything else, to I know what I'm doing in a year and a half. And I think it would work that way for I think if you were diagnosed and somebody said, Hey, look, I know this sounds crazy, but here's 6010 minute episodes called defining diabetes. It's gonna explain all the terms to you. And then after that, I want you to go listen to bold beginnings. Then after that, I want you to listen to Pro Tip series. And a year and a half from now, you're gonna be okay. Like, I don't think people would understand that. That's an incredible fast forward from what most people's experiences end up being, if they ever get to a point where they understand anything, to think that you had to be the right blend of person and personality and situation and Direness to go, oh, hell, fine. I'll listen to this in podcast. It's a little disappointing, because I know it works, and I know the way it works only because I've seen it in 1000s of people like, so I I've got a pretty good proof of concept here. You know what I mean? Just look at it like, look at it big picture. Like a person on a call has got to recognize, like, Uh oh, Kelsey sounds like she's gonna pop. And I don't know what to do. But have you heard of this podcast that I really haven't even heard of yet, but somebody told me it helped them. So maybe you could try, like, what an obtuse way to get to it. You know what? I mean? It's it. But I guess in the end, that's what it would take. Because if you felt in control, even though you weren't, and you felt confident, and someone said, listen to this podcast, you'd say, No, I'm not doing that. And it almost, you almost needed to be in that situation. It seems like to give it a try. Does that make sense? Am I right about that?

Kelsey 38:07
I think so. And I think I feel that same frustration from you, in terms of or with you, that I don't know why it's such a hard sell, right? Because I have tried. I have other people in my world now. And even to some extent, I reached out and I found, you know, some, some contacts who have kids with diabetes who were diagnosed years ago, and I think I've surpassed them in terms of management, I guess, depending on, like, what your expectations are of what management is, right? Or even, I would say like, Hey, like, we're considering like, FiOS or loom Jeff or whatever, like, what is your experience to these parents who have been dealing with diabetes with their kids for years? And they're like, I don't know what that is. I've never heard of it. You know? Like, oh, talking about the g7 and so it is. It's like a fast forward to to listen to those like, to listen to those podcasts and to figure it out. And I have people now who are adults, who are like, you should just really listen to this podcast. And I don't know if they do or if they will, like, I'm a mental health therapist, and that was one of the things that initially prompted me to reach out to you. Is, I don't remember exactly, because it's been too long, but there was a series of podcasts where I was getting maybe a vibe that you were feeling a bit, I don't burnt out, or just like, I think when you're in the helping profession, there's, there's these, like, waves of of time where it feels like really worthwhile and that it's a big difference, and you're seeing that, and then times where it feels like a slog, right? Like it's, it's a lot of work, and you're not necessarily knowing if it's helping or if your work is paying off. And for whatever reason, I felt like you were kind of feeling like, Is this even working? Or what do I do to help this work more?

Scott Benner 39:45
Was I giving off the vibe that I had just drug A horse across the desert, found it water, showed it the water, and it stared at me. So I held its head under the water and it wouldn't drink. Yeah, maybe a little bit. Yeah. Four weeks ago, there were 60,000 members of my private. Facebook group today, there's almost 65,000 and overwhelmingly, those people will not listen to the podcast, and when you ask them why, they'll say things that I find incredibly frustrating, like, I don't learn that way, or I'm not really a podcast person, and I want them to, like, hear you say, this is what happened, because it could happen for them that way. And by the way, and if it doesn't like, maybe you really don't learn that way. But also, I think that sometimes when people say that, what they mean is, I listened and I didn't understand everything an hour later. So I don't learn that way. That's not how it works. You almost have to listen to it, like music at the dentist office, like it's a little in the background. It's just the thing that's always there. And then one day you realize you're like, singing. You're like, Oh, I know this song, you know? Like you didn't know you were listening to the music, but you heard it, and it's been described to me so many different times, so many different ways. I've had this personal experience myself learning some stuff from audio that isn't diabetes, like, you know, and I've tried to tell that story on here, but I am generally not frustrated, but it is incredibly frustrating to know that 65,000 people could just listen to a podcast for a year and all have your story, generally speaking, like I'm not perfect, or I'm magician or anything like that. Like, I'm sure some people will just hate me and stop or whatever, but if they just kept going and listened to the information, I think they'd be much better off. And yeah, it is. It's a hard thing to know and not be able to make happen for everybody.

Kelsey 41:38
Yeah, I agree. I agree with that, and I and I it is, it's background noise for me. Scott, a lot of the time, right? I'm listening as I like, drive home, or as I fold laundry or and I pick out what what fits for me, and I probably forget a lot of what doesn't, but the things that fit are so important. Like, I feel fairly confident we have, thankfully, we've not had a hospital stay, but I feel fairly confident that I could navigate a hospital visit, even in our rural hospital, which is not a great place to be, but if my son needed to go there, I feel fairly confident that I could advocate to, you know, to keep his his pump and his CGM and to, you know, to push for that, like things that feel very comforting to me, even though they've never happened. And and then there's a lot in the podcast that's just entertaining, or things that don't, that aren't relevant, that that don't matter. But I think people sometimes think they're gonna have to sit down and, like, listen for the whole hour,

Scott Benner 42:30
like it's a note taking exercise, and they'll be test at the end. And, yeah, yeah. I'm like, It's not that's not how it works. Yeah, it's not how it works at all. The likelihood of you being in the hospital with your kid about diabetes is probably a coin flip, you know what I mean. But if it does happen, it's not like a drop down list is going to come out of your head because you're like, Oh, I I know all this stuff. It's just you're going to be faced with something and your response is just going to be accurate and valuable. I think that really is the way to think of it. It's like knowledge is not written down words like knowledge is just when I'm faced with something, the thing I think next is often helpful. Before I started doing this, I was and I still, to some degree, AM, although I'm much more busy in this room, much more frequently. But like people in my life, come to me with problems, and it's often stuff I don't know the first thing about, but I very frequently know the right thing to do, and I don't know why that is right. I genuinely don't like I'm not trying to take credit for it. I'm telling you I'm smart or anything like that. Just if you come to me with something, my common sense is rock solid, and if you knew me personally. And you listen to this podcast, you think, oh, Scott just deals with diabetes the way he deals with everything else. That's all I'm really doing. Like I step back, I try to see the big picture, and then I try to apply common sense to things. And the truth is, is that the answers are right there. It's whether or not you can see them, which sounds very like hocus pocus C to me, because I but it's just true. It's just true. You just there's the right thing to do, and it either occurs to you or it doesn't. And sometimes it's not the exact right thing to do, but it's in the right direction. And then the next thing gives you another opportunity to adjust again. And before you know it, you know what you you needed to go north, but you started off Northwest, and eventually you made a couple more decisions. Before you knew it, you ended up where you're supposed to be, and that is not a thing that's going to happen for you around diabetes, generally speaking, because you didn't grow up around it. You have not been talking about it. It's not in your back of your head all the time, but it can be like this. I think this podcast is the closest thing to you know, someday in the future where someone's just gonna put, like, a SIM card in your head and teach you something. But for now, like, this is the best way we have to do this. So anyway, I just wish. I don't wish whatever I don't know. I've been doing it for so long now, Kelsey, like that part of like, I've led the horse to water, and I'm watching it. I'm watching. Get dehydrated and fall over while I'm explaining to it what dehydration is and what water is, and that I've brought up the water, like I'm past that at this point. Like I can't, like, if I make myself worried about that, I'll go crazy. So you know that part's over. I'm just, I put it out there for people who want it, and hopefully they'll pick it up, but it's hard to get to it is my point.

Kelsey 45:22
It's really hard. And I think that's part of the things that prompted me to to go so far outside my comfort zone and email you to say, hey, like I want to come on, is to share my story. Because I think that, you know, there is such value in being able to share your story and have your story heard. And I think that there's just a deep kind of healing in that too, of being able to but also to to share with you that like this has been helpful to me, personally and in management of my son. So it's been helpful to my son as well, because I think we do pretty well for him at his age, with his diabetes, and he gets to live a really fun, happy, full life that he is very similar to pre diabetes, or what we had planned for him, at least, yeah. But also, like, there is a, there is a ripple effect that I, I hope you're aware of, but that I just, I felt really compelled to to come on and share with you the ripple effect that I have seen too, in terms of what this podcast does like it helps with management, yes, and it helps with knowledge, yes and it, you know, it has helped my family and me, but also, like in my life, like I have a very a co worker who is a who is a friend who has type one diabetes, and I can relate to her at such a different level and an understanding of what Her experience was because she's had diabetes for 20 years, and an understanding from the stories I've heard from other people, what what she has experienced and what her struggles are. And then I'm a I'm a therapist, and so I've had clients come through my practice that have type one and type two diabetes, and being able to relate with them, but also, um, like, I don't, I don't share any like, you say at the beginning of podcast, like, I don't share any medical knowledge. But I can, I can make recommendations. Say, like, hey, you need to see an endocrinologist or or advocate for themselves. Or, I had one client come through who had a crazy story and was diagnosed as type two. And we, we talked and encouraged her a lot to seek out an endocrinologist. She was just being managed by her, her primary care provider, and ended up I was type one diabetes, and she got a pump. And like, there is, there is a ripple that is meaningful, that happens. And so even if it's not, you know, maybe the who you take the horse to water, and the horse doesn't drink, but maybe, you know, I don't know, maybe there's another horse standing nearby that notices and comes and is unable to drink, whether it's a podcast or not. I think the work that you do is meaningful. So I think that was what really prompted me to say, like, I'm just going to reach out, because I just felt like it's more than just what has helped my family. You're trying

Scott Benner 47:58
to save me, is what you're trying to do. Like, I know it's, it's lovely. You're like, oh, this dummy. He's, he doesn't even understand what's happening here. Yeah, no, see you. You heard me at some point feel like, like, let down or defeated or something like that. And you came on to tell me all this. And this is really lovely. Thank you. And I'll tell you that idea of a ripple effect. It's funny because, because the only time I really get to talk about it is with advertisers, because the truth is, is that you don't have an Omnipod because you clicked on a link. You have an Omnipod because you heard me say it, and then you went to a doctor's office and said, Hey, I'd like to get an Omnipod. And so when I talk to advertisers, I go, like, look, you know, there's links all over the place, right? And trust me, guys, if you click on the links, it makes it all easier for me. But I know most of you aren't going to, most of you are just going to be in a doctor's office one day and say, Hey, I need glucagon. Can I get that jivo hypo pen, you know? Or you're going to be one day saying to yourself, like, I'm so tired of like, getting my supplies. I'm going to call us med or something like that. Like, they know that it happens that way. And I spend so much time having to talk about it with the advertisers who maybe don't understand that ripple as much, like trying to explain to them, like, look, you're you're in the place like this. This is the place that reaches people. But I don't get to think about it enough the way you you're talking about I'm gonna try harder to think about it that way, because, yes, I do. Sometimes just see a comment in a thread right where someone will tag me and say, I'm still married because of you, like, I would definitely be divorced now if it wasn't for you. And they say the podcast. And I find it generally valuable for me to not think of myself like, I don't know how. I don't know if you've ever heard that the President's talk about like, it's helpful if I just think of myself as the office and not the person. Like it almost feels like that, sometimes like I can't walk around Kelsey thinking that I am saving the people who are reaching out to me because. I don't want that like, You mean, like, I don't want the pressure of that. And I also don't want, I don't want to turn to an asshole, like, and, you know, probably people, some people listening that are like, laughing already, go like, Oh, it's too late, buddy. I don't ever want to be like, Oh, I saved that lady. Like, I just don't, I don't want that feeling inside of me. But you get a message from somebody and it's like, look, I'm telling you, I would be divorced if it wasn't for the podcast or my a 1c, is six instead of 13 because of this podcast, or, you know, or anything in between that. And I try really hard to absorb it without it turning me into a head like, I don't know if that makes sense or I'm not using the right words. I'm lacking a word here somewhere of what I don't want it to do to my, to my psyche, like, I don't think it would, but I almost think of myself in this situation as, like, you know, a person who's from an alcoholic family and just doesn't drink, just to be careful, like, to be sure, like, Could I end up being a person who's just running around, like, patting myself on the Back with both hands constantly, maybe when I was younger, and I don't think so anymore, but I don't want to risk it like i Does that make sense to you by any chance? Okay, all right, good.

Kelsey 51:11
I think I'd make one argument with you, though, go ahead, I think that there's validity in that, right? Like having that balance and also like to feel the expectation of you saving people is a big and heavy thing to carry. But I also think when you're in a helping role, or you know what you're doing is coming from a place and desire of wanting to like, to help others and to make a difference, you also have to, like, keep your tank full, so to say and like in allowing recognition of that ripple effect and the differences, is a really important piece of like, keeping keeping that full, like keeping enough energy in your tank to be able to continue doing what you're doing, because it takes an immense amount of energy to do what you're doing. Yeah, you don't want to overfill your tank either, and have problems in the other direction. But you also don't want to to not allow yourself to, like, soak in the good pieces or the beneficial results of what you're doing, because that's hopefully what also fuels you to continue doing what you're doing, and to know that it's it's helpful and worthwhile, and that's super important.

Scott Benner 52:14
Yeah, I try to pick one at the end of the day to read, usually, because I mean, it sounds self serving, but they really do come all day long. So, you know, I can't, like, first of all, I it would be a full time job for me to read messages from people all day long who are helped by the podcast, which is great. It just means it's reaching a lot of people. I try to make sure to see one in the morning, and I try to make sure to see one at night, especially on long days or when somebody's calling me names online, like, I'm like, let me just try to remember that I helped somebody today. We're like, you know, the first thing that happened to me this morning is I had to kick somebody out of my Facebook group this morning. Like, as I'm opening my eyes, I had to do that. And it's and it would be easy to just be like, Oh, is this the kind of day it's gonna be but I'm like, I just won't do that. Like, I'm I'm like, Nope, still hopeful. Like, let's go. I'm having a great conversation with you. I know what I'm gonna sit down and do later. You know? Like, I know how that's gonna help people. I also do a lot of things that I don't know how helpful it is for an example, like making transcripts for the podcast for people who wanna read. I don't think that many people read the transcripts, but some people do. So there's an expense and time that goes into making them, and it's a thing I do, and I've lost days of my life doing it, even putting stuff online. Like, you know, most people don't listen on my website, but some people do honestly about, you know, a couple 1000 people a day listen on online, and so, like, I make sure that it's there those couple 1000 people. Like, I probably should just be, like, just get a podcast app and leave me alone. If this is how they want to do it and this is how it reaches them, then I'm happy for that. Like, you know, but it is a very solitary thing I do, which is weird, because it feels so connected, because I literally talk to a new person every day, five days a week, and yet I do it in a room by myself, and it takes up a lot of time. And then when there are sometimes like, little wins even think, like, like, you know, it doesn't feel like a big enough of a win, or like, you'll look at the downloads for the day and just be like, is that it? That's how many people and I, and trust me, if I told you how many downloads there were, which I'm not going to do, you'd be like, holy crap, Scott. Like, what are you complaining about? But at the same time, I think what I'm complaining about is that, is that feeling that I've articulated it over the years. Every time I say it, I hate it, but I can't figure out a better way to say it is that it's some days it feels like the end of the Schindler's List movie when Oskar Schindler realizes he didn't sell all of his jewelry and like, and I just feel like, I'm like, it's not it feels like no matter what you do, it's not enough, and then you've got to actually find a way to manage that psychological part of doing this job. Like I know it probably just seems like. Fun, like I have a podcast, but it's not this morning I was able to sell a couple of extra ads. And you might be like, oh gosh, Scott, what will you do with all that money? Well, I'm gonna use it to pay for a private platform where people can congregate and talk, and I think it's gonna take me two years to see if I can even make it work. And I'm taking the money that I made after I pay my taxes and, you know, pay for the lights and everything, all the money that's left over for that is just gonna go to trying to keep that platform alive for enough years to see if it'll build up. Because I think if I'm right, it'll be a great place for people to go to get answers, even if somebody can't be there as a moderator to give them the answers. So I'm trying to make value for you listening right now for two years from now. And I don't know if that's gonna work or not, and I don't know if two years from now I'm gonna go, oh, I should have took my family on vacation with that money, like so you just tried to keep doing the thing, and then the business side of it, and I mean, like the social media side of it, I can't even explain to you that it feels like that every delivery system you have for what you're saying is fighting against you the entire time, like Instagram, Facebook, podcasts, like Apple, the way they tune their algorithms. Everything feels like it's trying to get you to quit. It's really something. This is not a fun job. I know kids nowadays, they say what? There's like, a huge percentage of kids, if you ask them what they want to do for a living, they say they want to be content creators. You don't trust me. It ain't fun,

Kelsey 56:37
no. And I think, I think again, I think you said, was it Jenny or Erica that that says you could be a therapist? I think there are a lot of of similarities, right in terms of what you do and being like a private practice therapist, and the isolation and the work and at such a higher level, right, and and managing all that social media. And so I think, yeah, I think that that played into prompting me to want to be here is to say, like, keep going. It is helpful, but also to acknowledge the immense amount of work, and also the work you do is not always, like, beneficial to your mental health and the impact that it has on your well being, because you have to be part of those systems, I don't know. Yeah, the ripple is big.

Scott Benner 57:20
Thank you. I have a text chain with a person who helps me feel normal, like through all this, so don't hurt, yeah, but if that person stops, which, by the way, there's, there's a person who fully deserves to make money from this, and I can't afford to pay them. I've tried, in my mind 1000 different ways, like, how could I go to an advertiser and say, like, look, there's an amount of money you should give me every year, just so I can give it to another person so they can help administer a Facebook page. And trust me, that's good for people with diabetes. And they're going to say, I don't know how to put that in a budget, and I need that money for something else. And no but I know for a fact that if I had even a small budget for that, that we could help more people more quickly and more efficiently. It's not how things work. Like, there's just not enough there's not enough funding for stuff like that. I've tried, like, a million different times to go to different places, and either they don't see the value in it, or it's not part of their mission. Or, like, whatever bull people say, like, you know what I mean? Like private like equity. There's private equity, people that support diabetes and stuff like that. You go to them, you know, I don't see it. I'm like, you don't see it. I'm like, here it is. Like, that's 11 years, it's been helping people. And I had one person tell me one time, you're just telling people how to Bolus. And I was like, you don't think that's helpful. Let's say that's all it was. You don't think that's helpful. And the person was like, Nah, like, we know how to do that. And I thought, well, yeah, you do. You do. And you're, you know, you in your good insurance and your money and, you know, like, all that stuff. Like, you somebody taught you how to do it. They didn't teach a lot of the other people how to do it. And so, you know, it's tough because I think that, and I don't, I'm not pointing my finger at anybody specifically, but I think there are a lot of organizations within the diabetes space who spend a lot of time telling themselves and other people what a good job they're doing for people. But I don't really see people doing much better. I just hear them telling me that they're doing a good job for them. I don't think that's going to stop. So there's all the places where you think you could get maybe a little bit of funding to help something, they're too busy on LinkedIn telling each other they're doing a good job. So I think

Kelsey 59:29
it's hard to understand the value until you experience the value, right, of what this is and what the podcast is and what it what it gives. Like, I would have been skeptical, right? Like, Oh, I'm gonna learn so much from a podcast, but, like, literally, I would bet money that my son's life is better and our management is so much better than it would have been had I not found this podcast and listened to these episodes, and it's just yeah. It is a conundrum, right, of how do you how do you get them to see that if they haven't experienced what that really is? It's an uphill. Battle for you. Yeah,

Scott Benner 1:00:01
I don't know how to explain. The truth is, is that I don't think I fully understand what it is. So me trying to explain it to another person is like, I just end up saying, like, I teach them how to use insulin, I give them a place for community and stuff like that. But it really is, like, there's just so much more than that, but I don't know how to quantify it. I mean, you just did a good job of but then it seems ham fisted, like, because I take you at your word, because I've seen it so much like you think your your child's gonna have a better life. Like, let's really break it down. You said your child's gonna have a better life because something I did like something I served to you or made available to you, however you want to think about it, I believe you, because I've seen it over and over again, and I accept it and I appreciate it. But how do you make another person believe it? Because it sounds ham fisted when they hear it, they go, Oh, the ladies being hyperbolic. You know what I mean? Like, that's how it's going to feel if they hear it. And, no, it doesn't matter. And then even if they hear it, like getting over the next hurdle and the next hurdle and the next hurdle, it just it never stops. You know what I could use more than anything? If somebody listening right now worked at Apple, I could use a phone call like that would really help. You know what I mean? Like, if one of you is really wealthy, I could use a few milli that would take care of this thing for a decade. Like, we could hire people and do things and help people and, like, really do a thing, but I also can't become a nonprofit, because there's not enough money in the nonprofit to keep it all going. I have to be ad driven, like, There's no way around that right now. I really appreciate this. I hope I don't sound negative, because I just, I just, I'm aware of all the pitfalls of all this. But I really appreciate

Kelsey 1:01:39
your message. I don't think you sound negative. I think, and again, this was probably a year ago, right? Because of, you know, I signed up six months ago, and the recordings that I was listening to were six months before that. But, yeah, in that moment of impulsivity, I think that's what prompted it. Is just this, this feeling of like, I hope, and I think I hear it in most of them, you know now, but I hope you know the difference that it's making, and makes and again, not just with me and my son, but in such a bigger perspective as well.

Scott Benner 1:02:07
Thank you. Thank you. I really, I genuinely, appreciate you taking the time to do that. In the last six weeks, I've interviewed somebody from Egypt, Japan, Australia, United States, Canada, South America. There's a person listening in Greenland. You know what I mean? Like, I think there's only one, but I have downloads there. It's just the craziest thing, right? I know the reach, and I see the downloads. And I mean, if you really want to know what's helping people, seeing the Facebook group grow the way it does, like, there's an indication that the words Juicebox Podcast are out in the world somewhere, because a really well growing Facebook group would be lucky to add 100 people a month. And this one's adding some days 150 a day. Some days it's, you know, 200 every three days. Like it's crazy and it keeps churning a lot. Like, we don't let it get crappy, like, it doesn't turn into something that it's it changed. Like, don't get me wrong, the Facebook group changes as it gets bigger. It's not getting bad. It adapts to, I guess, appropriately, service the size of it. It is a little sad sometimes, like, I used to be able to jump on and, like, almost feel like I was talking to people. Like, inside of a thread, doesn't it? It's hard to accomplish that now, it's still there, and it's helping people like crazy. So, yeah,

Kelsey 1:03:29
it's like a for me, I don't do, I don't do a ton of social media. I'm on there a little bit, but I, I'm I'm on there a lot, but I use, just like, an encyclopedia for diabetes, right? Like, I have found out so many helpful like, tips just by searching, like, even, like the adhesive, like how to remove it, I don't know, just silly things like that. Like, it's very helpful.

Scott Benner 1:03:48
No, that's how I think of it. And also, that platform that I was telling I mentioned earlier that I'm going to take this money and put this money into it's going to support, basically, like, I don't want people to some people recoil at the idea of AI or chat bots or something like that, but try to imagine like that Facebook group, except instead of a search bar, it actually had an interactive chat bot that you could talk to, and you could go there and say, hey, you know, this is my question, and it can go find you a ton of different responses for you to go, like, quickly, look at it's funny, because you said an encyclopedia, but I think of it. I think of it as like, a digital Dewey Decimal System. And so that's probably words that people don't know anymore, because I don't think you guys go to libraries, but I had to go to a library when I was a kid. And I very proudly, can tell you, I was one of the only people in kindergarten that was allowed to use the Dewey Decimal System. I remember that so vividly, like the the library, and pulling me aside and saying, you can use it. I was like, I can. I'm better than these. Yes, no, I'm just kidding, an achievement. I don't know why. I don't remember the details of it, but I remember they in our library. We used to have a class called Library. And we all had to learn how to use the system, and then we had to show the library and what we knew, and apparently, whatever I learned about it, I was allowed to freely go into the card catalog and find books. I see this idea in this group as that idea. I'm trying to find a way to take all of the knowledge and conversations in the podcast and all the knowledge and conversations on the Facebook group and collect them somewhere that they're actually at your fingertips. And I think I'm super close to getting that accomplished. So

Kelsey 1:05:27
anyway, yes, I mean, that would be, that would be incredible, and also help with weeding out some of the not so great responses sometimes, too, that that come up. I think you did an episode on like transference and counter transference the other day, and the chat bots help with that a little bit

Scott Benner 1:05:42
too. Yeah, yeah. I see what you're saying. Yeah.

Kelsey 1:05:48
I like your idea. Yeah,

Scott Benner 1:05:49
no, thank you. It's also worth saying that even when people are being crappy to each other, my wife sometimes says to me, like, sometimes just take people at their word. They're bad people. And I'm like, I don't know. I'm like, I don't know. I'm like, I don't think anybody gets up in the morning and things today, I'm gonna go online and say something horrible to somebody like, I don't think that's that's, I mean, something happened to them along the way. Even a person who, you know, yes, today, gave me a compliment online, but first had to make sure that I knew that I wasn't perfect before they complimented me, and I thought I laughed, and I thought I wonder what happened to them when they were younger, that they can't just say something like that to me without making sure first that I don't think too much of myself. I'm like, because that's got nothing to do with me, right? Like, can you imagine going online to give someone a compliment, but starting off with listen first, when other people you know say you're great, I roll my eyes, but I got to give it to you on this one, like, you know, like, what? What is that? What is that for? You know me, and I'm not mad about it. And if the person hears it like, I It's fine, like, it's such a strange thing. Like, what if I walked up to somebody on the street and said, Hey, I love your shoes. But before I tell you about them. Can I tell you that once I tell you that your shoes are nice, I don't want you feeling too good about yourself? What the hell?

Kelsey 1:07:09
Okay, right? Well, and I think even those people, we can learn something from, right? Whether it's that we just don't want to be like them, or that they kind of suck. You know, their their comments are also sometimes valuable, right? And we can, we can learn from those, from those two and, yeah, I think human beings are very interesting. Partly why I'm a therapist, yeah,

Scott Benner 1:07:29
imagine I took the person's point. Like, if you if when you're listening to me, if you give a little too much stock to the sarcastic part of me, I could see where you would think, like, Oh, he's going to think too much of himself here if I say this, but you don't really know me. I don't. It's not actually how I feel. It's just the stuff I find funny. Like, even after you said something kind to me earlier, I had to stop myself from making a dumb joke afterwards, because I didn't want to lessen your message. And yet, like, there is, like, there's still a part of me inside it's like, I'm not really comfortable with you being that kind to me. So even making the podcast is helping me with that, I guess Much to the chagrin of that person who already thinks that I think too much of myself. It's also difficult. I wish people understood better. Like I saw somebody online once outside of my group say, oh, that podcast is good, but that guy really he thinks too much of himself. And I thought, like, I really don't like I wonder what about me makes them feel that way? And I think it might be that I deliver a lot of what I say with a lot of confidence. I don't equivocate when I'm talking. And so I think for some people, like, if I'm if you're not apologizing while you're saying something positive at the same time, they think of it as boastful. Does that make sense? I'm not from this generation. I'm not going to apologize every time I open my mouth, or when I say something stupid, or try to be funny and it doesn't work, or whatever, like that. Or in the beginning, when you were talking and I said, Oh, I've been on a couple of dates where I felt like they didn't want to be there. Like somebody's going to hear that and it's going to sound like, I don't know, like, it'll sound like something to them that I don't mean and I don't have a thought or a feeling about if you're going to get online and try to help people with their diabetes and do it in a way that is conversational and entertaining enough to keep people in this topic that nobody wants to sit and listen to, then you are going to say a few things that somebody is going to be upset about, and you just have to be okay with it. So I don't know Anyway,

Kelsey 1:09:25
when I think some of that's cultural, too, in terms of like, like, different communication styles culturally and being direct and being sarcastic, like, I'm I'm in the Pacific Northwest Area, and culturally, I think we communicate very differently, right, than like, I don't actually know where you're at, but I'm assuming, like, more East Coast

Scott Benner 1:09:43
area. I'm in New Jersey, and I'm from Philadelphia. Okay,

Kelsey 1:09:47
yeah, so I think even the first couple podcasts I listen to, I think, yeah, I mean, it's noticeable, right? Like, they're very different. Like, the area I live in, we're very passive, right? Like, probably passive aggressive communicators or, like, I. Like a culture of like, easily offended people, more so on the west coast or Pacific Northwest Area. And so just having that understanding of like, it really has nothing to do with you or who you are or or you know, how you are in the world. But I just think there's, there's like, cultural differences, yeah,

Scott Benner 1:10:19
to be aware of if we were together like you and I have been together for an hour like you. Haven't misunderstood me once? No, yeah, right, and I have not misunderstood you, although your your style is is clearly different than mine, but I've tried to slow myself down to accommodate you. Hopefully you felt good while we were doing this, but and you also said you were nervous at the beginning, but I could tell when you stopped being nervous. Do you know when you stopped being nervous? No, it was a while ago. Though it was a while ago, you sped up, you started to have a thought, and you really let you let it out. You weren't hearing your words. You were just talking, oh, if that makes sense or not, like I was like, Oh, good, she's comfortable now. And then we kind of kept going from there. I would know it if I heard it back again, but I don't remember what you were talking about when it happened. I just remember when you were comfortable. It felt like to me, you had gotten through the things you were here to say, and now you were just talking. And then you just, you, you sped up, so I sped up with you. Anyway. You were really terrific. You heard that episode about that. What was it called transfer? And sort of sort of like, yeah, you got where I was coming from with that. Yeah,

Kelsey 1:11:23
yeah, absolutely. I mean, it's a big deal in the therapy world, right transference and counter transference. And I think having that understanding right of that, you know, that might be going on it just, I don't know if it takes away, like the frustration around it, but it's a really important thing to understand that that happens all the time. And just we need to have an awareness of it. And if we have an awareness, then we can, you know, move through it or move beyond it or something. But people go through the world not even paying attention, right, or noticing that. Or I would imagine that people who say like, Oh, he's so, you know, I don't know, full of himself, or he comes off this way, probably should take a few minutes to sit back and figure out why they're feeling that

Scott Benner 1:11:59
way, right? Because one of your parents was a dick to you,

Kelsey 1:12:03
yeah, yeah, right. Like, what within yourself creates your, you know, you feeling like that's really off putting or whatever they're feeling so, yeah. I mean, I love all those episodes. I love the ones with Arden, where you guys are, like, asking, you know, wild questions about things you don't understand. Like, all of those are so entertaining. Oh, good. We're gonna do

Scott Benner 1:12:17
more of those when she gets a break from school. Yeah. You know, it's funny, I always use this as an example. I was interviewing this girl, she's, like, in her mid to late 20s, I think. And we were talking about, she was, I don't know, honestly, I don't know what we were talking about. But, like, I said something about, oh, did your dad used to come home and, like, slap your mom on the butt, and then, like, you saw them Be like, you know, I don't know, intimate, like that kind of thing, like in the kitchen thing. And it was, it's like a fleeting moment in a conversation, and I get not just a note, but a review from somebody. Can you not see how uncomfortable you made that woman with this and blah, blah, blah, right? And the review, again, I recorded it six months beforehand. So, I mean, I don't like, see the review. I'm like, What is this person talking about? So like, I go back because I think, gosh, did I make somebody uncomfortable, you know? And I go back and I listen, and I'm like, that's what they're talking about. And then it hit me, and I searched my email, that person that I interviewed after the interview was over, sent me such a long, glowing, loving email about what a great time she had making that podcast, and she can't wait for people to hear it, and she's so excited. And boom, had, you know, anyway, she had a great time, but a person who heard it was 100% sure she was super uncomfortable and just didn't have the autonomy or no, there's another word that people use that makes me upset when they say it agency. This poor woman just didn't have the agency to stick up to you in the moment. I was like, You're completely wrong. How about that? And we have written communication here from that person. It says You're completely wrong, but I didn't think of it that way. What I thought of was what happened to you. Yeah, that what I said made you that uncomfortable. Because it's the truth is, is you're uncomfortable. She wasn't uncomfortable. And who didn't you speak up to in your life? Because this has nothing to do with me. I'm not sure how you're supposed to get people to do that in real time, but I just, I figured, the same way you described how I talk about diabetes, I thought, well, while I'm talking about diabetes, what if I could get people to, you know, be a little more comfortable with themselves and understanding of who they are too, because I think that would make this whole diabetes thing easier as well. Truth be told, like I put in that content for people who are struggling with that stuff, because I honestly think it's going to stop them from taking as good care of themselves or their kids. And you know, yeah,

Kelsey 1:14:39
absolutely, yeah, great. It's a barrier for them, and in probably many areas, I would imagine, and being able to be like reflective and self insightful is so is helpful, and I bet it is helpful in diabetes management as well, because, you know, I worked in that health clinic, and there's such a strong connection between depression and diabetes and anxiety and diabetes, and that ability to look inward and. To, I don't know, just have that that internal sense of self is, is so valuable.

Scott Benner 1:15:04
Yeah, when you say it with all the words you learned in school, it sounds so much better than when I say it. Thank you.

Kelsey 1:15:10
Well, I paid a lot of money to learn those words, so hopefully, hopefully I can use

Scott Benner 1:15:13
them seriously. You were talking. I was like, I feel like that's what I said, but it sounds so much better when Kelsey says it, because I don't really understand it. I'm telling you, I only know the feeling of it, and what I believe is the common sense of it. That's really the only vibe I have around most things. So I'm not educated enough on anything to tell you why you feel that way. I'm just interested in why you seem to feel that way. And anyway, you were awesome. You and I should have our own podcast

Kelsey 1:15:41
together. Yeah? Okay, well, this was my with. This was a bucket list item, so I'll have to, I'll have to think about whether I can muster up the courage to do another one. Probably, this was actually pretty great good time. I did. I had a really good time, and I feel like, yeah, like, I marked something off pretty big for myself today, too. So I'm glad for

Scott Benner 1:15:58
you. I can't wait to get an email from somebody that tells me that I've made you uncomfortable. Yeah, uncomfortable. Well, you didn't. You did not. I was just teasing. I don't think I did either, although, honestly, you're one of the few people who spent time before we started recording, telling me that this was really uncomfortable for you and that you were considering not doing it. I think most people, yeah, most people don't do that. I was like, oh gosh. Like, it, but I saw it as more of like an honesty and then a bit of a challenge for me. So I had a good time. I really enjoyed this. Thank you. Me too. Excellent. Hold on one second for

me, I'd like to thank the ever since 365 for sponsoring this episode of The Juicebox Podcast. And remind you that if you want the only sensor that gets inserted once a year and not every 14 days, you want the ever since CGM, ever since cgm.com/juicebox, one year, one CGM. This episode of The Juicebox Podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox at my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox, us, med sponsored this episode of The Juicebox Podcast. Check them out at us, med, Comm, slash Juicebox, or by calling 888-721-1514, 887211514, get your free benefits check and get started today with us. Med, thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcasts, please do that now, seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card if this is your first time listening to the Juicebox Podcast, and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all. Look for the Juicebox Podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. The episode you just heard was professionally edited by wrong way recording, wrong wayrecording.com, you.

Please support the sponsors

---

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

#1568 Best of Juicebox: Small Sips Tug of War

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.

Meal bolusing simplified (I'm not kidding)

+ 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.

COMING SOON

Please support the sponsors

---

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

#1567 Everyone is from Regina

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.

Leah, a Manitoba social worker, navigates her son's type 1 diabetes amid a family history of autoimmune and allergies.

+ 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
Here we are back together again, friends for another episode of The Juicebox Podcast.

Leah 0:15
Hi there. I'm Leah. We have two boys, a 13 year old and a seven year old and our 13 year old boy was diagnosed with type one diabetes in 2013

Scott Benner 0:34
if your loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox Podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one you can start your journey informed and empowered with the Juicebox Podcast, the bold beginning series and all of the collections in the Juicebox Podcast are available in your audio app and at Juicebox podcast.com in the menu. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. The episode you're about to listen to is sponsored by tandem Moby, the impressively small insulin pump. Tandem Moby features tandems newest algorithm control, iq plus technology, it's designed for greater discretion, more freedom and improved time and range. Learn more and get started today at tandem diabetes.com/juicebox us med is sponsoring this episode of The Juicebox Podcast, and we've been getting our diabetes supplies from us med for years. You can as well us. Med, com, slash, Juicebox, or call 888-721-1514, use the link or the number. Get your free benefits, check and get started today with us. Med,

Leah 2:15
Hi there. I'm Leah, my husband and I and our two kids live in Brandon Manitoba, which is in the prairies of Canada. We have two boys, a 13 year old and a seven year old. And our 13 year old boy was diagnosed with type one diabetes in 2013 Nope. That is not right. That's not right. Yeah, no. 2023

Scott Benner 2:48
sorry. You know, you took me by surprise, because I thought, I actually thought that their child was diagnosed more recently, and then I thought, oh, maybe not. So, no, no, wrong year. Okay, that's okay. So tell me again. How old is is his son?

Leah 3:02
Our oldest Cohen is 13. Okay, so he was 11 when he was diagnosed.

Scott Benner 3:08
Okay, so just two years ago, is there type one or other autoimmune in your family?

Leah 3:13
No, there's some type one far enough back that I don't know that it counts for anything in my mom's family, she had a cousin. That cousin son had it okay, my dad had type two, which I know is not related, but there is autoimmune for sure, and particularly from my mom's side of the family. And I struggle with some of that 10 Cohen had before he was diagnosed with type one also. So it's definitely right in my family, we all kind of struggle with some of the same things and some different things.

Scott Benner 3:55
Well, what did Cohen have before his diagnosis? What else did he have going on?

Leah 4:00
As far as autoimmune he had other diagnoses beyond that. He was followed by a allergist for about three years. He had viral induced asthma. It started about when he was three, I think, and the allergist had said that often kids do tend to grow out of that type, and he did eventually grow out of that type. He also has some eczema and psoriasis, so he's also followed by dermatology, which has been kind of that's been ongoing for Cohen. What about you? Well, I have a Fibromyalgia diagnosis that kind of been queried by other physicians, but it is what it is. So I deal with some chronic pain, but I also have some dermatitis type issues. I. I was diagnosed with an eye condition at the age of 20 called posterior scleritis, at which time the ophthalmologist had told me that that's often associated with autoimmune disease. But other than what I've got, I haven't developed anything new as of late.

Scott Benner 5:21
Okay, and then you said there's other stuff, like on your mom's side of the family too. What else?

Leah 5:26
There's thyroid. My sister has thyroid. Both my mom and I and my sister have psoriatic arthritis, and my mom had a cousin with rheumatoid arthritis.

Scott Benner 5:38
Well, guess what? Leah, I'm counting the cousins daughters type one as part of your family line, because that's a fair amount of autoimmune dripped in there. I think. Yeah, anything on your husband's side? No,

Leah 5:52
not that we know of Scott is pretty healthy. He was actually adopted at birth, so we, as we were preparing to get married, had looked into getting some of the medical documentation from his birth, and there was nothing noteworthy in there about anything autoimmune wise.

Scott Benner 6:18
Yeah. How about your other kid? Do your younger one. Did they have anything

Leah 6:22
so far? Just the viral induced asthma. He's got that

Scott Benner 6:26
too. Okay, interesting. So they both have it. And you live pretty rurally. Well, we're

Leah 6:33
in a city. It's the second biggest city in Manitoba, Winnipeg, I want to see it has about 750,000 and Brandon, where we live, has about 45,000

Scott Benner 6:45
so a lot of people I just meant, like, because you called it the prairie, so I wasn't certain if that meant,

Leah 6:50
like, oh yeah, no, there's lots of farmland around here. And you know, we're kind of the armpit of Canada, so to speak.

Scott Benner 7:00
Why are you the armpit of Canada? I don't understand.

Leah 7:04
Well, we're probably the least desired place to come and visit, because I think we're just seen as you know, a lot of snow, cold. We do have beautiful lakes and stuff like that. We really do. And we get hot, hot summers, but comparatively to places like Toronto and Vancouver and all of BC, really, even Alberta and then the east coast were just not the top I got you tourism destination.

Scott Benner 7:34
So it's May. It's beginning of May right now is it still cold there?

Leah 7:38
It's kind of an odd time, because you'll wake up and it'll be like, and I don't know, I only know the Celsius system, but it would be like plus three or four here in the morning right now. But then today, it's supposed to get up, I think, to around 19 degrees so, and then by Sunday, it's supposed to be 30, but we could still see snow at the same time. Okay,

Scott Benner 8:06
so, so for people like it, like a four degree Celsius is like 39 here. So for us, that's about six degrees above freezing, five, six or six, seven degrees above so above freezing, but not a lot. I would call that cold. And it can go to 30 then,

Leah 8:24
well, on Sunday, yeah, it's supposed to be 30 degrees Celsius, okay, but, but we are not unknown to have like, a big snow storm in the middle of in the middle of summer, yeah, in the middle of May. It's not unusual if that happens,

Scott Benner 8:40
wow. So it can go from, like, for people listening, like, from like 36 degrees to like 86 degrees, which is such a huge swing, oh my gosh.

Leah 8:49
All right, and then the other way, we can go, like, to minus 40 degrees Celsius, which is nasty.

Scott Benner 8:58
And tell me why you don't leave.

Leah 9:01
I ask myself that every winter, I guess, because our family is here, and I see myself as a snowbird, once we retire, is

Scott Benner 9:15
your family that great? You need to be that near to them. It's really cold.

Leah 9:19
Well, yeah, it is, I know. And actually, like, one of the biggest things of why we have stayed because I grew up in Saskatchewan, which is the next province over, which is similar to Manitoba, and I had kind of always thought we'd go back there eventually. That's where my family is, and I again, Cohen had some other diagnoses, cognitively and developmentally related as a preschooler. And I'm a social worker, and I'd worked for in the disability field, well at that time, probably for four or five. Five years, I closed that season out, actually, after Cohen got diagnosed in 2011 but because of that, I kind of knew who the players were, as far as supports in the community of where Cohen would need, and who those people were, and so it was a comfortable place for us to be initially. Then he moved over to the school system, and I don't know it's a Brandon is kind of a neat little place. It's like a big, small town, really is what it is. But all right,

Scott Benner 10:41
you like it there? It's fine. I hear you. I'm not gonna argue there. It just sounds very cold to me. It is, yeah, tell me a little bit about your son's diagnosis. How did it come on, and what did you notice first

Leah 10:51
April, I guess, April of 2023, where there was he had shown a symptom, but I didn't, neither Scott or I connected it back to diabetes like it wasn't even on the radar. But we had taken him. We'd gotten a call from the school that Cohen was really complaining that his calves were sore, and so we picked him up and took him to walk in, and, you know, they sent him for an x ray, but thought it's likely just growing pains, that's normal, and so that's where it was led. The X ray was normal, and we didn't think much of it. And then about three weeks later, it was a weekend, and Cohen was and he was playing spring hockey at the time. It was a weekend, and they weren't playing weekends at the time, so we had friends sleep over, and I took them to the movies and the Friday night, and Cohen, partway through the movie, asked me if he could go get a refill on his pop, which is really unusual for him. But I was like, I did again. I didn't think a lot of it. I was like, Sure, go for it. And then he told me when we left the theater he felt just like a little bit funny, but he couldn't really verbalize what that meant, yeah, yes, and probably having more context and maybe some of his other cognitive stuff will help with this at some point, but the next day, like he kind of bounced back that night, his friends left over, went home, he had other friends come. Wanted to go for a bike ride, so he went along. But we were just getting separate ready, and Scott noticed out the front window that Cohen was walking his bike home, and looked wind dead, and so when he got in the house, he was not feeling great. He didn't feel like eating. He was presenting like he had the flu, very tired. And then on the Sunday, we woke him up and we're gonna go to church, and he was like, Mom, I'm just so tired. And so I was like, that's okay, you sleep. We'll just leave you. So we did that. And then I did notice that day that he was going to the bathroom a lot, and but again, I didn't know much about type one diabetes, so I wasn't thinking about thinking, Yeah, I like Scott. And I had already talked about, like, I don't think he's going to school tomorrow, so, but I, you know, we

Scott Benner 13:33
thought he seems sick to you at that point, just like unwell under the weather. Somehow, diabetes comes with a lot of things to remember, so it's nice when someone takes something off of your plate. Us. Med has done that for us. When it's time for Arden supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden. This is your friendly reorder email from us med. You open up the email. It's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one. Us, med has done that for us. An email arrives, we click on a link, and the next thing you know, your products are at the front door. That simple. Us, med.com/juicebox, or call 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put the stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM, like the libre three and the Dexcom g7 they accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call 888-721-1514, or go to my link, usmed.com/juicebox, using that number or. My link helps to support the production of the Juicebox Podcast. This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pump and algorithm, the tandem mobi system with control iq plus technology features auto Bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox, this is going to help you to get started with tandem, smallest pump yet that's powered by its best algorithm ever control iq plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead, and it adjusts insulin accordingly. You can wear the tandem Moby in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately, clip it discreetly to your clothing or slip it into your pocket head. Now to my link, tandem diabetes.com/juicebox, to check out your benefits and get started today.

Leah 16:07
Yeah, and we did decide that we take him to walk in on the following day, the Monday, and that because this was kind of just coming out of COVID and everything. So he neither him or his younger brother had had physicals in the last couple of years. So I said, I think we should get some blood work done, though. And just like, insist for it. Yeah. So we did, and we got a call about 530 that day from the walk in that saw colon. And he just said, You guys gotta get to emerge right away, and the pediatrician is there waiting for you, so, you know. And he said something about his blood sugars being very high. And so, yeah, I kind of panicked, but we got ourselves ready to go to the hospital, and I contacted my sister. She works for two physicians in Saskatchewan, and one of them is a pediatrician. So you know, she had already kind of gotten her in the role of things, of what we should be expecting with this and initially and and thankfully, it was actually Cohen's pediatrician on Call of that night, which was really helpful for him. And I just for comfort, yeah, Brandon, like, they'll do some minor stuff with kids, but they don't like to touch much when it comes to anything complex. So I could tell that they were, I think actually, Dr Nomani had already indicated that she'd been on the phone with the Winnipeg endocrinology department for peds, and they did some blood work, that kind of stuff. And the initial message was that we were gonna have to go by ambulance that night, run home and get your stuff and come back here. So I was gonna do that. And then in the meantime, of course, like Gray was only about four, which wouldn't have probably been a great scene, having to be there with us all week. So my sister in Regina was working in the backgrounds to help find care for him, and they actually drove out here in the end, and but Scott had called me while I was home grabbing stuff to pack, and said they have decided that they think he needs to be airlifted and so you need to get back here like now. Yeah,

Scott Benner 18:39
can I take a moment to thank Canada for naming a place something that sounds like vagina? I think that's really fantastic. And by the way, I'm one Saskatchewan away from my bingo card being filled up on my my my Canadian Provence bingo card for today. You're like, Brandon Saskatchewan, vagina. Oh, my God, we're all over the place. This is awesome. Yeah,

Leah 19:02
yeah, I'm a Regina. And there's lots of good names and not so good names. You just kind of take them in. I don't

Scott Benner 19:13
know why we wouldn't just call this episode Regina in, because that was that, is that? Oh, what are you called? If you're from there, what is

Leah 19:19
it? Say it Say it again? Oh, usually they see, oh, you're from vagina. Yeah, we all are technically, yeah, fair enough. Everyone.

Scott Benner 19:32
Sorry, your your poor son is very sick. Did you take him back to the house when they said, Go grab your stuff? No, no, he stayed at the hospital.

Leah 19:40
He stayed right. Yeah, right. My husband stayed and Gray came back for with me like we still thought we were taking him to Winnipeg at the time, gotcha,

Scott Benner 19:49
passed the other kid off to your sister. You gathered some things, went back to meet them at the hospital.

Leah 19:55
Yes, awesome. So Scott drove into Winnipeg. It's about two hours from here. And I went on the plane with Cohen. And did you say a plane? Yes, they ended up airlifting him because they felt Leah, it

Scott Benner 20:09
was a plane with little pontoons on it that lands in the water. Also,

Leah 20:13
I don't think it was that fancy. It didn't have seats. It had one seat beside the person you like, for one parent or loved one to sit beside. You know, where your child is laying in a steel kind of I

Scott Benner 20:34
yearn for a simpler life where pontoons on a prop plane is considered fancy. I think that's what I want. I'm gonna, I'm moving back to vagina. What do you think of that?

Leah 20:44
It's not so bad. You have some perks here in this area,

Scott Benner 20:48
has a lot of perks, but it also has a lot of downside. So

Leah 20:53
true Winnipeg probably is more. But anyways, we won't, you know, waste our time on that. They're kind of always in rivalry of who has the least murders, who is the least per capita in the air.

Scott Benner 21:07
You always, you always want to strive for, strive for better. Yeah. So wait, so you flew on how? How long were you on the plane? I

Leah 21:15
think it was about like 40 minutes. Tops 35 maybe interesting. I mean, you kind of get lost in time, sure, probably from, like, flying out and then, because an ambulance actually took us to the airport where we took this medical airplane, so probably 40 minutes leaving, like, taking off and landing, and then

Scott Benner 21:40
it, Where's your head? Then at that point, Leo, like, you just went from I think my kid has flu like symptoms, to I'm on an airplane, like, what are you thinking about at that point?

Leah 21:50
Well, I was thinking he was gonna die. And what I understood when the pediatrician talked to me at the hospital was, I thought they were saying that he was had diabetes, type DKA, that's what my understanding of. Okay, yeah, so I was like, but I also wasn't pulling out my phone at that point googling. I was just worried. And it was scary. It was how quickly he got sick and wondering, like, were there other things that we missed in the past? And, like, there probably was, but I think yeah, for us. And it's funny, because, like, the night before, I was Googling on different things, this could be, I said to Scott that type one diabetes came up that I really wasn't thinking, that's what this was.

Scott Benner 22:45
Is chaotic affair. Statement, yeah, yeah. Can you look back on it and tell me, is that someone's fault on the hospital side for not for not sharing it clearly, or were you just so like bumfuzzled that you couldn't hear anything that was happening.

Leah 23:02
I think it was probably a little bit of both. I think in Brandon, they were panicked, just because, again, when you know any child has anything too serious happening, they want to ship them off to Winnipeg right away.

Scott Benner 23:17
So their hustle was, let's get them the hell out of here. Yeah, okay, all right, okay,

Leah 23:22
you know, you're not thinking that at the time. It was like, I think I could have, like, remained, probably not very calm, but a little bit, if they just continued us on the path of the ambulance. But that's not what happened. So were

Scott Benner 23:37
you panicking? Like, outwardly, would people look at you and go, This lady is in a

Leah 23:42
panic. Oh yeah, I was

Scott Benner 23:46
tell me, like, looking backwards. How would you have handled it differently if you got another I don't want you to get another shot at this, but if you get another shot, if you got another shot at this, what would you do differently?

Leah 23:56
Do you think for yourself? I don't even know. Because, like, I guess when you don't have enough information class, you know, like, it's probably, probably also, again, I acknowledged partly it would have been me and my level of understanding around what some of these terms were, and I was just jumbling them all up together. And,

Scott Benner 24:18
yeah, is this common for you. Leah, like were, did the situation knock you off kilter, or would you describe yourself as having trouble in situations like this? Generally, that makes sense.

Leah 24:29
I would Pro I do, but not ever like this before. Like our healthcare system, as you know, runs a little bit differently. And what the one thing I can say in all of this is that experiencing the world of pediatric care for type one diabetes in Canada, or at least in Manitoba, has been amazing, but it's very different navigating our system as an. Adult, and you know, you wait in the hospital or in the emergency room for 20 hours, they they miss lots of things because they're understaffed, and so it is a very broken system, but not for kids. Okay, so I think more my fear around like emergency rooms is some of my own past situations that have happened that I just hate having to be

Scott Benner 25:27
there. Okay, so hospitals in general are not a good place for you, not really, okay. Okay, that makes sense. No, I'm just trying to understand, like the whole pathway, because, you know, most of your and my communication when this was first happening, you would write me very long emails. I'm sorry. Okay, don't be sorry. You're not the only one that does it. So don't worry. Like, I understand what happens when you get into a panic, but your emails are so, like, long and involved. I will tell you something I don't think I've ever I've probably never said this aloud on the podcast before in the last couple of years. When I get emails like that, I actually feed them into a large language model, and I say, what is this person asking me? Because often it becomes like a stream of consciousness, and sometimes people get lost in what they're saying, or they give you so much information, it's like a book report. And when I sit down to do my my email, I'm already answering hundreds of emails, so, like, when I get to one, I'm like, I don't want to miss anything here, and sometimes I don't have the bandwidth for it either. Like, so, but can you tell me what, like, what prompted those emails? Like, were you scared or trying to figure things out? Like, what place were you in at that time? Well,

Leah 26:43
I would say, like, you have some comrades standing beside you with who teased me about my writing and that I could work a little bit on

Scott Benner 26:54
condensing. Are you talking about your husband? Actually,

Leah 26:57
more so my work like I've had for close to 12 years. And he jokes with me about it a lot, but I and I am actively working on it, because I do go back and see sometimes I'm like, okay, Leah, I wasn't at that time, though, definitely

Scott Benner 27:15
Oh no, no, no. You weren't like, like, I 1,000,000% like, if you made me bet as to whether or not, you were mentally ill or not? I would have gone, yes at first. And then I realized you weren't, like the first one. I was like, oh. But then I realized you were just overwhelmed and trying to figure a lot out. Was it all on you? Like, did it feel like I have to get this all figured out

Leah 27:35
now? No, like, Scott, you know, right in the beginning was a part of things. And we, like, we spent almost a week in Winnipeg. They spent about two and a half days, I think, just getting Cohen's body, like, nourished with whatever nutrients that had lost and hydrated. And then, you know, they take you into the three days. We call it like diabetes school. And so we did that. And yeah, both of us, from the beginning, were really committed to doing Yeah, yeah. And I think too, like another aspect of with Cohen that is challenging for us is, you know, he's he's had some hard things like thrown at him through life, through, you know, just since he was a little guy, if you saw him, you wouldn't think he's different, but you can kind of tell once You start talking, he struggles. He's not autistic, but he has like, and actually, there's a psychologist through the diabetes clinic in Winnipeg that we had connected with when we had some behaviors like, I don't know, the first six months to a year with Cohen after diagnosis, and she's been there like we always say, she's the silver lining of all of this, because she's just an amazing human. And I think it's so cool that there are psychologists that specialize not just in like looking at brain and cognitive function, but paired with chronic illness, okay? And so we just feel super blessed, because from the moment she met Cohen, you know, she knew we like, we weren't just dealing like with a kid that was having behaviors, because he was 11, and it's a hard, you know, everybody could argue that when their child got diagnosed is the hardest time, but

Scott Benner 29:45
she saw something about him that was a little deeper. Yeah,

Leah 29:49
she really wanted to understand like because he'd had a couple of psychologists psychological assessments done through the school prior to that he had when I. Honestly, one done in Winnipeg. He was in grade one, and then he had another one in, I think at the end of grade five. I mean, those really look at a lot of the same things, but of course, they're gathering that information to understand corn better from an academic perspective, whereas, like, Dr Jen came in and was also like, she could see and understand all that information. And, you know, she worked with Scott and I for a while to start, and had given us some tips, and we are trialing some things, and we were getting a little bit of success, but it was a lot of so she finally, like a lot of back and forth, and not great strides. And so the last, well, not the last session we had with her, but the one that kind of rounded up that stream of virtual meetings with her counseling Scott and I, she had just said to us, you know, Cohen had a lot more balls in here to juggle than other kids his age, prior to type one, and then he got thrown type one, and now he has more balls to juggle. And she's like, simply put, he's just not coping with it. And so she had, at that time, said, like, I feel like we really understand poem well from a cognitive and academic sense side of things. But she said it would, I would really like to try and understand better how he interacts with his world, how his problem solving is, what his social skills look like, that kind of thing.

Scott Benner 31:42
What is her estimation of his situation? Like you said, like he's he doesn't have autism, but he's struggling a lot. Like, are they giving you some sort of a diagnosis or an understanding of what might be happening to him?

Leah 31:52
Like, when he was a preschooler, he was diagnosed with what they call Global Developmental Delay, which is basically, like, there's five areas of core development that developmental pediatricians and such look at as far as where kids fall. And so he was, if I think, if you fall under, like under the whatever is average on three or more, then that's as a preschooler, the diagnosis you would get. And he is also diagnosed with something called dyspraxia of speech, which is, it's not muscle weakness thing, it's more so like how the brain sends the messages to the mouth to move the muscles at the proper times, if that makes sense. So, like, you know, I remember when he was like, four, we'd go to speech therapy, and she would, and she would do lots of, like, oral strengthening stuff. But you know, she would, if we started with the word pop, and you know, she would be, like, really pronunciating that. And, you know, and, and she would then say pop. And then she'd say, can you say it back to me, Cohen? And he'd be like, ah. And then he keep looking at you, like, I did it, like, can you quit asking me, I'm saying it. How many

Scott Benner 33:17
times can I say pop before you people say it's okay, yeah,

Leah 33:21
and he's grown in all of that like but as they get older, you know, they still kind of follow what's going on for them as far as the outcomes, you know, through school. And we delayed his school entry by a year so he had he didn't start Kinder until six, because you get, I would say, much more frequent and thorough supports through therapy and those different kinds of specialists when they're preschoolers. So we just thought he could benefit from that extra

Scott Benner 34:00
year, did it end up helping? Yeah, okay, yeah, it did,

Leah 34:05
for sure. And of course, when they're little like and he was quiet and shy, I would say even up until grade four or five, he had some stress. Most of his struggles are with ELA, like his language arts and reading and writing and being able to pull information,

Scott Benner 34:27
and are those still a

Leah 34:28
struggle they are. So he like this. Dr, Jen, he does still have a speech therapist involved through the school, and she had done this a speech assessment about three years ago. So Dr Jen repeated that one and he there weren't a lot of changes. There were a few improvements, but he doesn't meet criteria for a language communication disorder, but he's borderline, so his two big. Biggest things are that, like, he has slow processing speed. So you know, the best way to give an example of that is, like, if you're talking to him and you're on sentence three, coin still back on sentence one, figuring out and processing what you're saying from there. I think trying to draw language out, especially spontaneously, for him, is really hard. Again, it would be because of the processing speed, partially and then just, you know, I'm not exactly sure of all the science of it, but no, you know. So now social skills are starting to be like, impacted as he gets older, because it's easier when you're a little kid than you look like you're, you know, but he's starting to like, just make, not intentionally, like, you know, or even the way he communicates with his friends. Sometimes

Scott Benner 36:00
they're moving more quickly than he is. Yeah, is that a thing? Have you seen this with anybody else in your extended family? Or is this completely new for your family?

Leah 36:09
This is new for our family. I just have a sister, and she has four girls, and they're all bright, and Cohen had gone two weeks over term before he came out by C section and there was meconium in his amniotic fluid. Oh, I see which can sometimes they say, I don't know if it's because they might swallow it or what that looks like that can impact be a factor, but they don't know for sure. Can I

Scott Benner 36:44
pivot for a second here and ask you a question? I hope you take this the right way. I really do okay, you speak slowly, like you have a very slow, specific speaking style, and but you write prolifically. And so I want to know, like those long emails. Do they take you long to write? Sometimes, sometimes like I was trying to decide, do you write like that? Because it's a freer way of expression for you,

Leah 37:10
I do write better than I speak. I can speak and but I

Scott Benner 37:18
want to be clear with there's nothing wrong with what you're saying. You're methodical. When you speak like you're slow, you think about your words like that kind of stuff. Like, there's no doubt that if you asked me to retell the same story you were telling, I could get it out in like 45 seconds. And no, no, no, don't apologize. No, no, I'm trying to figure the whole thing out. Hold on a second. No, don't there's nothing to apologize for. There's nothing wrong with speaking slower or faster, or anything like that. I'm just wondering if you're prolific when you write because it felt better for you as a better way of communicating. But that's not the case. You feel completely comfortable in both ways. Is that right?

Leah 37:51
I feel pretty comfortable speaking. I think I'm not always as effective in speaking as I am in writing.

Scott Benner 37:59
That really feels like your genre, then for communication. In a

Leah 38:03
way, writing is kind of like therapeutic for me, to be honest, how so I think it's a way for me to get my thoughts out and process them. You know, I do a lot of that at night, and I suppose I would say it's my way of journaling. I often send them as emails, but I don't send them well, I'm learning, I'm learning that art that's my been my goal of 2025, and I'm doing very well at it.

Scott Benner 38:32
It's awesome. That's really cool. So you're finding a way to, like, get through your thoughts by just writing them down. Do you email them to yourself?

Leah 38:39
Yeah, or I just save them to my draft, because I'm not really a journaler. By, you know, like, that's not my jam. I wish I liked to read more than I do. I used to bet I don't enjoy

Scott Benner 38:52
the reading anymore. Is it because you're busy or because you stopped enjoying it?

Leah 38:56
I think, yeah, it's because I'm busier. And I used to, you know, pre kids, like, get through a book in two days, and now I pick one up and I'm like, What did I even read in this book the last time? I hope to get back to it? Wendy, I

Scott Benner 39:13
lie to myself and say that I hope to read, but I really don't. I don't hope to do it at all. I it's too slow for me, like, as a way to, like, ingest things. Yeah, for sure, I am working more towards, like, books on tape and stuff like that, because it seems like a quicker way for me to get it. But I like that you found a way. What do you end up journaling about personal that you don't want to share? Is it about diabetes or how do you what do you use

Leah 39:34
it for? I think different things. Sometimes it is about advocating for Cohen in the school system could be anything related to just like getting my thoughts out, if it was a difficult day at work, or if it was a difficult day with the kids, just to kind of be able to process through it and put it to bed.

Scott Benner 39:56
It's a great idea. Did you come up? Come up with that? You're on your own. You heard about it so. Where did you come up with doing that?

Leah 40:01
No, I kind of came up with it on my own. I I didn't call it journaling at the time. It was, yeah, I see a counselor, and it was her that was like, well, that's kind of is journaling. Leah, like, you know, if you're not sending it, especially

Scott Benner 40:19
Call it what you want, but you're right. Yeah, right, right. When did you begin seeing the counselor?

Leah 40:23
Just before colon got diagnosed, actually, like a couple of months before. What got you there? Difficult work that I worked for the like a government department called the Department of Families, and I was a social worker in the children's Disability Services Program. And, you know, it just evolved as governments changed and it was, there was toxicity, and it was quite stressful, and I live with some chronic pain, which I managed fairly well, but I probably, if I'm gonna let myself fall apart a little bit, it's gonna be at home. Was just feeling like life was and I was noticing that I was more anxious, and I didn't know why. There wasn't really anything about it that made sense. And so I just decided, and it's not the first time. You know, my doctor said, Well, maybe you should see a counselor. But you know, when you're a social worker, you're like, Well, I know what they're gonna tell me. I I know. I already know what they're gonna ask and what answers they're looking for, so you kind of fight against it, but totally been a

Scott Benner 41:39
blessing. Yeah, is that a interesting situation to be in? Like, professionally, you can assess yourself and say, Oh, I know what my problem is. But personally, that doesn't mean that you'll tackle it. Is that right?

Leah 41:51
Yeah, yeah. And I think the best thing about her has been she just challenges my ways of thinking in very kind ways. That's where it's been most helpful for me, because sometimes we have these notions or beliefs that have followed us since we were really young, and so then sometimes our thoughts and or our behaviors and patterns and habits come from that that's where it's been the most helpful is just her pointing that out to me in a very kind and gentle way. But it's been a really good thing. And I I've said to myself even like when I think I don't need one anymore, I'm just gonna keep going. I'm gonna keep going for life, yeah.

Scott Benner 42:42
What would you tell people, right? Like, you know, if you if you're battling something from your past, it could creep back at you if you don't keep talking about it, right?

Leah 42:51
Yeah, for sure. And I think we think sometimes, as adults, stuff that happened very, very long ago, or whatever, we can bury it in the hatchet, but it's not even necessarily the events, but sometimes the way we respond to things is out of an adopted idea from when we were kids. That's not accurate.

Scott Benner 43:15
Also, if it's something to do with a parent or something like that, like I mean, you have to forgive and let go. But if they don't, it can be hard to completely disconnect from the feeling like, if some you don't mean, like everybody needs to come together, and that can be difficult to get somebody to do. They might not even see it. They're not doing the work you're doing it therapy. Like, you know what I mean? Like, all those things are problems. Yeah, right. I hear what you're saying, alcoholic, no, no, something else you want to tell me or no you don't have to

Leah 43:44
No, no. I actually grew up in a Christian home,

Scott Benner 43:49
a little a little too Christian. What are we saying? Leah, well,

Leah 43:52
I would say middle of the road. I think partially what made my home a little bit more tight around what we were allowed to do as kids is my dad was also in policing. Oh, so he had an overprotectiveness of my sister and I, yeah, yeah. So, I mean, we weren't, but you know, we weren't. Are you

Scott Benner 44:14
afraid? A lot like do things? Does everything scare you? No, I don't

Leah 44:19
think so. I think more it used to more than it does now.

Scott Benner 44:25
It's interesting. It's really interesting because it's, you know, you just get a couple of things piled up on top of each other, and they create a way of life. And you don't know how it's going to impact everybody. It's, it's,

Leah 44:37
yeah, and probably, I think that's, you know, in a way too, with Cohen and me just having started, you know, having a couple months in with her was just so timely, because I honestly that was kind of my tipping point of coping, and I knew something needed to change. And I. She really helped.

Scott Benner 45:01
You're saying it's lucky you got started before the diagnosis.

Leah 45:05
Yeah, I, I'm I feel really blessed about that, because I was still working at my same job. And you know, when you're in the government, you're, it's like, I'm gonna have a pension. And I, I've probably been there around 17 years, and there was a point seven position at a personal care home here, and really that's kind of one of the things that her and I had determined, is that me working less would allow more time to look after myself, but also be more present, you know, and available, especially with new expectations and the responsibility, yeah, with the diabetes. So I never, ever thought that I could do an interview. Yeah, I was, like, my resume was last updated in like, 2007 so, you know, it was on a floppy disk, so, but I, I did it. And for you, my dad is probably rolling over in his grave that I walked from my pension. But at the same time, I, I have too many years put in to, you know, be miserable at a

Scott Benner 46:19
job. Yeah, no, I hear you like, how do you find the podcast?

Leah 46:23
We love it like, and I believe it was off of one of the Facebook groups that I saw it. And then we just tried listening to it on one of our drives somewhere, and very quickly got drawn in, and there's just so much good stuff in it, and I just hope that I can get through it all one day, because it, you know, really, actually for us thought like, I mean, you say it in your own way, and I think A lot of your like parents that you interview from listening to you also have their own way of saying it, but our endos and stuff are helpful on some level. But I think just candidly, like hearing you have these conversations and like talking about doing what makes sense instead of, I guess, getting these guidelines of what you're they want you to do, and not feeling good about it, but not feeling, I think you gave us the confidence to kind of step out more and, you know, with insulin, and we're still working on that Cohen's MDI, which is not where our hope is, city lands forever. We really would love for him to get on a pump, and I believe he'll get there, but that that's part of who Cohen is, too. He when we started the Dexcom. We had about six months of him ripping them off and just really struggling with that. We really felt, though, that that was so imperative to not only just us being able to follow him somewhat like, not somewhat but with him being somewhat vulnerable, and not, you know. And I would still say Cohen's understanding of diabetes is, you know, it's what he understands. And that's where Dr Jen really guides us on that, you know. And at the time, just before he got diagnosed, that we were at the dentist, and they are like, okay, he needs braces, and we had put that off for over a year just based on Dr Jen's recommendation of the he's got way too much going on, and so we did that. He's six months in. I do have faith that he is going to get to the pump. He is going to go to a de camp this summer. We did a family one last year. Okay, so he's going to go to that one that's affiliated with the Manitoba kids, yeah, and I think that will be amazing for him, because it will just be, you know, a place where it's just all kids doing the same thing, but a better than family camp at that age, because he gets to be there without his parents.

Scott Benner 49:34
Yeah, yeah. I know how old he's 13, right? Yes, he's

Leah 49:38
13, and they're in the space socially around 10. Yeah. Dr, Jen, he, he, she's like, honestly, there he is one of the like. She's like, he's my most favorite kid that I've ever assessed and spent time with. And she's like, but he's a really tricky kid, because he doesn't really fall. Into one box. You know, he he has a little bit of the like stuff going on around, like, some rigidity and sensory stuff, but I don't know. These days, they all say we have a bit of the autism in us. So who knows? Everybody's got a little, yeah, but he's like, he's got so much empathy and can be interactive. Where he's going to struggle is socially, because he just coming up with spontaneous conversation and friend groups is just takes him more time, but he's working with him on trying to give Cohen different options. And obviously, our world is completely language based, so for kids like Cohen, it's not the best, but you know, she's trying to because I think it gets him very stressed out. And for example, like he had a medic bracelet, and I bought him, like, one that I thought was the most discreet, like just a silicone band, and he had stopped wearing it. I don't know when, but when we noticed, we talked to him about it, and he freaked out. And he's like, You guys don't understand. Like, I just get asked too many questions, and so we kind of left it, and I talked to Dr Jen about it, and from there, is like he just needs the adult helpers in his life to give him some of the responses that he can give to that and know that he also doesn't have to answer if he doesn't want to, I'm finding a way of saying that you know part of the hard you know, because I would say, Well, you got to read your audience because he thinks it's always coming from a negative place, and reading his audience isn't easy for him. Yeah. What's

Scott Benner 52:00
your assessment of him? Like, you know, you said the, you know, in the beginning, you're like, they it's not autism. It's a little, maybe it is a little like, what do you think is going on? Like, do you have a feeling is there like, something in your mom gut that's telling you is happening?

Leah 52:15
He has, like, he has a like out of the assessments that they do that the school when they come up with their IQ, like, all of the testing put together, and I want to say an average IQ is 100 and Cohen's is about 83 Okay, So he's not super low. Like, you know, he's low enough to have deficits in some of his executive functioning skills. He's is doing regular, like a regular mainstream school programming, but he has adaptations to his plan so things like, you know, he has to do the same outcomes and show that he can do the work that you know. He gets certain exceptions, like, he, you know, getting more time, you know, having the teacher check in more frequently, and breaking down the instructions for him less, questions, that kind of thing. Yeah, yeah. So, you know, we're not too sure. Scott and I try not to go too far ahead in the future, because all of it put together, you know, not sure what that's going to look like. And is he capable of I could totally see him being a kid that you know could go to a trades College, potentially, if he had some help with the school room work type parts of it is he a university kid? No, I already know that. And I think though there's some other things that are just where his friends would be, for example, money, like, you know, coincident allowance, forever and he never asked for it, which is not typical for a 13 year old. It's not that he doesn't want it. I he's just not been motivated, or, I guess, fully understood the value of what it can do for him. He has, like, some really scattered skills, which is what makes him really kind of tricky. But Dr Jen is going to reassess him next year, like before he goes to high school, because she's just feeling like even an update once he's more into pure puberty and just having activity information going to high schools, because it looks so different I see.

Scott Benner 54:51
So you think he'll have he'll have challenges along the way, for sure, you're not certain how they're going to impact him as an adult, and he does seem like maybe he could do a trick. A at some point. Yeah, yeah. And your other child doesn't have any of these issues. Is that, right? Except for the allergy thing, the viral asthma, okay, he's totally opposite. Gotcha? Well, it's a lot to deal with Leah. It just, it really is, you know, it's a lot. Are you getting help, like, beyond, like your cell phone? It sounds like your husband's very involved too, which is awesome. But do you have other support?

Leah 55:24
Well, I would definitely say Dr Jen is our main support through, you know, the diabetes clinic, and we'll have her till he's 18. And of course, like family, my family is in Regina. My husband has just his dad, and he's a couple of hours away, so we have limited natural supports. Yeah, we also have lots of people that love us and love our kids and show up at times where we really need it. Just, we need it. That's awesome. Yeah,

Scott Benner 56:02
that's terrific. I'm happy about that for you, definitely necessary, you know, yeah, yeah, and you find the online thing supportive as well,

Leah 56:10
yes, like, like, your Yeah, work, and absolutely, yeah, we, we both do, and we both listen to a lot of your podcast, and Cohen has heard, heard you many times, and he had said to me a couple of weeks ago that he had Googled you so that he would for sure know what you looked like when he meets you.

Scott Benner 56:37
Helen, I'm much more handsome in person, so it's going to be awesome. He'll be super excited. Yeah, no,

Leah 56:44
that's awesome. But no, the work you're doing is incredible. And thank you. I know that things are different from country to country, but really, like, we're a big community at the end of the day and what supports are available to us, from province to province and state to state may be different, but I really believe that it's the people that have lived this disease that are the ones that know the most. For the most part, I'm not going to say all, because we have some pretty like skilled and gifted physicians and specialists out there, but you know, most people don't know that, and I know that you probably don't live with this as much because, you know, Arden's on a pump and she's older, but Cohen has as many highs as he has lows, and so We're probably at four times a week in the night to for lows, usually to give him what his body needs to get him out of there. And we're

Scott Benner 57:51
just trying to keep up at this point, right? Yes, yeah, yeah. So is your knowledge of diabetes growing, or is there so much else going on that it's hard for you to put the the effort into that completely?

Leah 58:05
No, I think both Scotts and mine continue to grow and we there. There are always times where you feel like you're weighing it and it's like, well, you know, like, I still don't know how to dose for fast acting sugar stuff, so that is, like a hard one for me, and I just take a guess. And now that we're almost two years in, we don't get as stressed about it, like, if we're wrong, yeah, we're wrong, and we really hold on to your motto of like it is so much easier

Scott Benner 58:42
to stop a lower falling blood sugar than to than to beat up a high one.

Leah 58:48
Yeah, yeah, yeah. And some people don't understand that, especially in the pediatric world, they want to keep the number higher, just because it makes them feel safer. But I also think our endos recommend that a lot.

Scott Benner 59:04
Yeah, yeah, I hear what you're saying. I think they do too. It makes it harder when you're talking to them right, because they feel like you're going against their good counsel sometimes. Yeah, have you found that? Have you run into that problem?

Leah 59:18
Yeah, we have it. Initially, we had a nurse educator with us, and there was some things that she would recommend to us that we just didn't feel right about, and there's things we have. Well, one thing we have a regret over is that she thought it would be easy enough to just do the Dexcom training virtually, which for maybe most kids would have been, I don't think it was the right thing to do for Cohen, not her fault. But, you know, looking back, those are some of the things it's like, well, we'll know for next time and be a little bit more careful about and I think that's. Too. Like, we've learned so much about Cohen through all of this. And you know, Dr Jen is really talked to us about, like, it's really important how you use language. Because quick example, I know we probably have to wrap up soon, but he in the beginning, was like, because he comes home after school, and neither of us are home, and we have just said, like, if you want to have a snack, just give us a call and because we need to figure out the insulin. And he was like, I didn't realize this for a long time, but I think he was taking that as I need to phone and ask permission for a snack when it wasn't, it was more like he just doesn't know how to do the carb ratios.

Scott Benner 1:00:48
Oh yeah, you wanted to help him with the buttons, and he thought he was asking for permission just to eat. Yes. Okay, yeah.

Leah 1:00:55
And so when those moments kind of hit you, you're, you know, and I can see how he wasn't completely wrong in those situations. So we're more watchful. And having said that, he's like, entering puberty, and no matter what we say some days, he's

Scott Benner 1:01:13
Yeah, despite all of his problems you can he's still a boy. Is that what you're trying to tell me, yes.

Leah 1:01:18
And Nobody says that. They get, like, super grouchy when they had puberty.

Scott Benner 1:01:24
Nobody told you that one. No. How many things have you learned that if you knew, in hindsight, you might not have had kids, because I have a pretty long list at this point in my life. You know? I'll tell you what. It doesn't stop either, like they'll get older, and you know what I mean, there's still more to do and more to help with, and being a parent is no joke. I'll tell you that much.

Leah 1:01:43
No, and you never really stop, nor do you ever really stop being a kid, right?

Scott Benner 1:01:48
Yeah, no, it's interesting. That's a hell of an insight. You're right. It has been a little bit over an hour now, and I am getting texts from Arden, who is telling me that we have to get moving because I have plans with her this afternoon. So let me just ask if there's anything left that you didn't say that you wanted to say, I don't want to get you out of here without you getting anything out that you that was important to

Leah 1:02:08
No, I just wanted to thank you for the opportunity to come on. And it truly is an honor. Like I tell everybody, you're the guru of type one diabetes podcast, and I don't think I've listened to anything really captivating that you know, from east to west really, as far as different topics you cover, and I think they speak a lot to us in different ways, and so we're grateful that we learned of the resource. And I do apologize about my extremely long text or emails, rather sorry

Scott Benner 1:02:52
emails, direct messages at one point, yeah, like, no, no, it's fine. Don't worry again. I'm being serious when I say this to you, like you're not the only one. Like, it happens. People get overwhelmed. Do you know what I mean? Like, they just do, like, this happens. And and then, you know, at some point you say, you know, I'm on an island here by myself. I, you know, for you and ice float, I don't know what to do. And you feel like, like, oh, this person might know, and it, you know, it's a resource. And you I don't know how you're supposed to stop yourself from asking. I'm glad that people ask. You know, I'm a person too, and like, sometimes, you know, when you start getting into the 1,000th word of something, I'm like, I don't know what's happening anymore.

Leah 1:03:29
No, no, I I know. And you know, probably not every parent looks at it this way, and it's the last thing I'll say, Scott. But you know, for me, and I still sometimes feel like this, that like, essentially, type one diabetes is also it's like organ failure, and that's what people that don't know about it or don't live with it don't understand. Tell me how you mean, I think how intensive the management of various you know, one of the endos said to us early on in the in the journey to us that it's a micromanage disease, and the hope is, is that one day that micromanagement is transferred from the parent to the child. That felt very true for us, just because of the age that Cohen got it, but we know we're not going to be in this place forever, and things that, you know, we've grown in some areas, and it's just one of those non linear things that

Scott Benner 1:04:35
it's an incredibly slow process. It just really, it just really is, and I've seen it move more quickly for some people than for others. It's just not the point, like you have to have these experiences over and over and over again, and then eventually they just start to make sense. And before you know it, you know, you look back one day and you wonder, like, I guess you don't recognize yourself one day. You know, one day you're just like, by. I've got this. I don't know how I got here. I don't know why it is that I feel comfortable all of a sudden. But my opinion is, is that it just it takes however long it takes to go through those experiences until, instead of being surprised by them, you see them coming. I think that's the Yeah. You know what? I mean?

Leah 1:05:17
Yeah. I totally get that. That is such a good way of working. Thank

Scott Benner 1:05:21
you. I have a podcast, so I'm good at talking about stuff like this. Yeah, you were really fantastic. I genuinely appreciate you doing this with me. I've been looking forward to talking to you, actually, for a while because I thought, like, like, what a great opportunity to you know, you have a lot to say, and obviously there's something going on in your life that I think would be really valuable for you to share with others, and I appreciate you

Leah 1:05:42
doing that today. Well, thank you so much. I was pretty certain I was in your grave box or whatever, or maybe it's going to be really entertaining.

Scott Benner 1:05:56
Yeah, no. Leah, you too. You're too Canadian. Because once I was like, at some point I was like, Hey, this is really long. I can't really answer this, and he just synopsize it. You were understanding. Like, it wasn't like, you were like, oh, leave me. Like, what do you mean? Like, you're like, No, I get what you're saying. Like, no, you you're great, you're Don't worry about your fav, you're fantastic. And I love this. I really appreciate your time.

Leah 1:06:14
Thank you Well, and I appreciate you giving me the opportunity. And, yeah, just keep doing what you're doing. Scott is touching families and individuals and research companies all over the world. Oh, you're very kind beyond that. Yeah, you're really

Scott Benner 1:06:31
kind. Thank you so much. All right, hold on one second for me. Okay, okay.

Head now to tandem diabetes.com/juicebox and check out today's sponsor tandem diabetes care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the tandem Moby system. Arden has been getting her diabetes supplies from us, med, for three years, you can as well us. Med.com/juicebox, or call 888-721-1514, my thanks to us, med for sponsoring this episode and for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox podcast.com. To us, med and all the sponsors. Okay, well, here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app, go to YouTube and follow me or Instagram. Tiktok. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page you don't want to miss. Please. Do you not know about the private group? You have to join the private group as of this recording, it has 51,000 members in it. They're active, talking about diabetes, whatever you need to know. There's a conversation happening in there right now, and I'm there all the time. Tag me. I'll say hi. My grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all available at Juicebox, podcast.com, up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you at Juicebox. Podcast.com the episode you just heard was professionally edited by wrong way recording, wrong wayrecording.com.

Please support the sponsors

---

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate