#1570 Body Grief
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A type 1 diagnosis impacts eveyone and everthing. Erika Forsyth is here to discuss.
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Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.
When someone is diagnosed with type one diabetes or other chronic illnesses, there's no doubt about the impact that it has on them, but it also impacts the people around them and the people who love them today. Erica Forsyth and I are going to talk about just that. If you'd like to learn more about Erica, check her out at Erica forsythe.com 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, please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Today's episode of The Juicebox Podcast is sponsored by the ever since 365 the one year where CGM, that's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the ever since now, app no limits. Ever since this episode of The Juicebox Podcast is brought to you by my favorite diabetes organization, touched by type one. Please take a moment to learn more about them. At touched by type one.org on Facebook and Instagram. Touched by type one.org check out their many programs, their annual conference awareness campaign, their D box program, dancing for diabetes. They have a dance program for local kids, a golf night and so much more touched by type one.org. You're looking to help or you want to see people helping people with type one. You want touched by type one.org. Summertime is right around the corner, and Omnipod five is the only tube free automated insulin delivery system in the United States, because it's tube free, it's also waterproof, and it goes wherever you go. Learn more at my link, omnipod.com/juicebox, that's right. Omnipod is sponsoring this episode of the podcast, and at my link, you can get a free starter kit. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found it, omnipod.com/juicebox, Erica. Today, we're going to talk about how diabetes impacts the entire family, like not just the person who's been diagnosed, but everyone, and how their lives have changed from the moment that it happens to like the everyday life afterwards.
Erika Forsyth, MFT, LMFT 3:19
That's right, yes, we're hoping to give Yeah, kind of a broader picture and understanding of how it impacts not only the individual, but the parents, the siblings, the grandparents, and hopefully builds empathy around all of that.
Scott Benner 3:32
Okay, do you want to start
Erika Forsyth, MFT, LMFT 3:34
Sure? Sure. So I know we have discussed, obviously, how it impacts the individual and caregivers from the day of diagnosis, and even we could walk through how that impacts the siblings. Are they left at home, or does one caregiver go to the hospital? Do grandparents have to step in just from that immediate even first day of diagnosis? Whether you're in the hospital for a few hours to a week, the impact starts immediately. Yeah, we hear all the stories and all the different layers, but I think it is important to understand that. And obviously the person being diagnosed with type one, it is the most impactful for that individual, sure, and it does touch everybody.
Scott Benner 4:22
So I'll start by sharing that the other night, I was just working here at my desk later at night. And you know how your phone, like, shows you pictures from the past all the time. So this photo pops up as I'm still working it, but it was in my it was on my computer, not on my phone. This time, it's like, on this date, like, that kind of thing. And on this date, shows me a photo of my wife holding Arden as a pretty young person, and my son leaning against her there. At we're at Yosemite on a trip, and they're kind of like, like, backed up to an overlook, and I'm taking a photo of them, and I look and realize pretty quickly, oh, Arden doesn't have. Diabetes in this picture, which is not an experience I have very often, because Arden was so young when she was diagnosed, and I just very quickly started to wonder who everybody would be today if that didn't happen. And like I looked at those people in that photo, and I thought, I wonder where they were headed before this happened? I don't think that that's a question you can ask yourself in the moment, because it's if you even think to ask that of yourself, it's just going to come out as, like, Everything's ruined, like, you know, like that kind of thing in the moment when it's happening. I do think that this is an important conversation to have, but that it's more valuable coming from people who can look back many decades over something and give you maybe a bigger overview of what all this means. That's why I'm happy you've one of the few times I'm very happy you've had diabetes for such a long time. I'm happy that Arden has been diagnosed for, you know, almost, gosh, don't even know, 17 years coming up on maybe. But anyway, that was it. Like, I think that's this entire crux of this. And I can't believe that they're, they're meshing up between us, recording and this happening to me, but I promise you, this happened the other day, and I just all I could think is, like, where were we all headed before this happened? And I know you think, like, Oh, it doesn't have to change anything for your son or you or your wife, but it's not true. Like, I think we are fundamentally different people than we would have been if this didn't
Erika Forsyth, MFT, LMFT 6:24
happen. Yes, and it really is impactful based on the age too. I know there's always a kind of a community conversation of like, is it easier to be diagnosed when you're two versus 10, versus 20 versus 60? And really, I think we could all just maybe agree that it's there's no easy age. It just sort of no matter what, yeah, yeah, there's no better age. There's no better time,
Scott Benner 6:48
right? There's different things that will happen based on your ages, but I don't think that judging them against each other is valuable, and even not just your like, not just the person being diagnosed and their age, but the age of the people around like, you know, I have a story about my son that I'll tell later, but I want you to dig into this a
Erika Forsyth, MFT, LMFT 7:07
little bit. So I thought we could, we could kind of focus our conversation from mainly two lenses, or kind of definitions of grief and how the diagnosis impacts all the different family members in a kind of larger family system. And one is is disenfranchised grief, which we have talked about in various other episodes. But I think this is a really significant and important concept to understand, which basically is known as hidden grief, or sorrow. So it's something you know. We kind of know if somebody you know gets diagnosed with cancer or there's a death in the family from someone who maybe has lived a long, successful life, we kind of understand communally, culturally, what that grief looks like, and how we can respond to that person's grief, or how we can live out that grief. And I know there's maybe a lot of assumptions in that statement, but the disenfranchised grief is that most people, society doesn't really understand it, and so therefore it's really unvalidated and misunderstood.
Scott Benner 8:13
You almost don't have permission to mourn something if it's not a death or something that the that the society agrees is a morning thing. Yes, like, we're all allowed to say, oh my god, cancer. And we, like, you know what I mean? Like, you feel it like that, and you should, by the way, very valid. And death, okay, he's sad from death. But if somebody comes along and says, I just found out that I'm losing my molars, and I'm really upset by it, people are like, Why don't you pull yourself together? You're not allowed to. And what does allowed mean? Like, culturally, is that, right?
Erika Forsyth, MFT, LMFT 8:43
Because we don't see it, we don't understand it, and so therefore, as the individual, you don't feel like the like you have permission, like I should feel grateful. Like, how many times have you heard people say, I've been told or I should be grateful? It's not cancer, at least it's not at least it's not fill in the blank, right? And in that statement, it automatically, even though the person is trying to encourage and affirm and give perspective, it automatically creates a sense of why you really don't understand what type one is, and kind of increases that sense of isolation. And then you're, you kind of are internalizing, oh, I guess I can't be that sad about this diagnosis, because I keep hearing, at least it's not cancer. So you feel like, well, I should I can I be this upset about it? And that's what we
Scott Benner 9:33
hear, yeah. And I would imagine, too that there's people who react by saying, like, oh, like, just, like, you just said, like, they have that conscious thought, like, I guess I'm not allowed to be upset about this. There's also probably people who you know will maybe bend more towards, yeah, like, there's nothing for me to be worried about here. Like, you know, at least it's not this. Just because that's their outward reaction doesn't mean they don't feel what you just described, which is, I'm not allowed to be upset by this. Do you know what I mean? Like. Even if they don't look like they're gonna like, Go cry in a corner and go, I can't believe I have diabetes. It's okay. I'm gonna cry about it. I'm gonna ask for help. I'm gonna do all the other things that maybe I feel like doing. It doesn't mean they're not being impacted psychologically by that initial feeling of, this is not a thing I'm supposed to be upset by because there's something else out there that's blah, blah, blah. That makes
Erika Forsyth, MFT, LMFT 10:21
sense, yes, yeah. And that kind of goes into this other concept of body grief, which we'll get into. But I think there's this automatic sense of comparison and like ranking our grief, like, based on like ranking hardship. Yeah, no, that's pretty common. I think, yeah, this quote. I pulled up some kind of just random quotes that are out there with, you know, disenfranchised grief. No one died, but it felt like we lost something huge, our sense of normal, our normalcy, and no one talks about that. So because you've this disenfranchised grief is just a part of kind of the journey of type one for most people, or diabetes diagnoses because it isn't you, like, hopefully you know you aren't going to die from it immediately, right? But there's so much loss around the normalcy, and that's hard.
Scott Benner 11:11
I've seen a loss of people who can't trust their bodies anymore, yes, like, that feeling of like, oh, this thing was supposed to do all this stuff for me, and it can't. And now I wonder what's going to happen next. Like, you're always in the like next, like, waiting for the other shoe to drop. Like mode. You're like, well, if it stopped doing this, I wonder what else it's not going to do. I see that from a lot of people all the time, when that's possible, right? How are you not supposed to feel anxious about that? Or how is that not supposed to live in the back of your mind somewhere, or maybe it does for some people, today's episode is brought to you by Omnipod. It might sound crazy to say, but Summertime is right around the corner. That means more swimming, sports activities, vacations, and you know what's a great feeling, being able to stay connected to automated instant delivery while doing it all. Omnipod five is the only tube free automated insulin delivery system in the US, and because it's tube free and waterproof, it goes everywhere you do, in the pool, in the ocean or on the soccer field, unlike traditional insulin pumps, you never have to disconnect from Omnipod five for daily activities, which means you never have to take a break from automated insulin delivery. Ready to go tube free. Request your free Omnipod five Starter Kit today at omnipod.com/juicebox Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox type that link into your browser or go to Juicebox podcast.com, and click on the image of Omnipod right at the bottom. There's also a link right in the show notes of your podcast player. This episode of The Juicebox 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.
Erika Forsyth, MFT, LMFT 13:56
It does, and that's where you've queued up again. This great, this new, I mean, it's not, it's not a new idea, but the coined term of body grief is exactly what you just defined. And this body grief is something that we have talked about, but we actually just last month in March, a woman named Jane Mattingly just came out with this book called body grief. I am just starting to read it, and I think it is going to help us a lot in in kind of this world of diabetes and the world of chronic illness, and it's that the emotional is defined by the emotional distress experience in response to changes or perceived limitations of the body, often due to aging, illness, injury, societal pressures, chronic illness. And it is about that your relationship with your body, where you have the sense of like, did my body betray me? There's sadness and anger, and the betrayal is kind of encapsulated in that. Idea of body grief, and it obviously affects our mental health, our self image, identity, and I appreciate this quote, particularly for children or teens. It's a quiet sadness that often gets overlooked in favor of resilience or bravery narratives. We often celebrate our warriors out there, and there's nothing wrong with that. I think that's a really healthy and beautiful mindset and thing to celebrate, like, look at my strong warrior, my type one way, or which that person can be. And is there also, can there also be space for the individual or the family to process this body grief and the sense of, like, did your body fail you in some way?
Scott Benner 15:46
Yeah, I wonder sometimes if the bravery thing isn't a way to not have to say out loud what you're thinking, which is like, I can't believe this happened to us, or I can't believe this happened to him or me, or whatever. And instead of like, even going through those thoughts, just jumping over them, right? To look how brave. It's not brave, right. Like, right? You know, I've said this before. Like, you know, your pancreas stops working, your kid's pancreas stops working, you keep living. I mean, what were the other options? Really, I don't think people want to be brave. I think people are forced to be brave. Like, in, generally speaking, in this arena, like, you know what I mean? Like, nobody's like, you know what you should do make sure one of my organs stops working correctly, because I really want to be brave. Anybody would switch back, you know what I mean? Like, oh yeah. Like, so it's also interesting. Like, a lot of that language around the body grief, I feel like I saw this week a post that, you know, you could read through it and see a number of different things. This person was, you know, struggling. They didn't understand why this thing had happened to their kid and everything. And when I got done reading it, I thought, this person's having a clear crisis of faith. Like, that's what this is this has got, like, all the narratives that they put into this post. I'm sure this is how they feel. But big picture, this person is a believer and wants to know how God let this happen to them. And I don't see a lot of difference between the person who would have something like this happen and go, How did God let this happen to me, and somebody who could have this happen and instead think, like more like, How did my body let this happen to me? Those seem like very similar concerns to me, but maybe, maybe you'll go farther and I'll change my mind. But initially, that's how it struck
Erika Forsyth, MFT, LMFT 17:32
me when something happens to our body, or we feel or have this kind of either real or perceived sense of loss around how our body failed us. Our automatic responses, we need to find something to blame, because it's so uncomfortable. And caregivers go through this too, right? This is kind of there, and we'll, we'll get into all these different lenses. But when we go through this loss around the body, can we? It's very human, natural and normal to say, Who can I blame? Can I blame God? Can I blame myself as the parent? What could I have done differently for the individual, diagnosed? Could I have lived, slept, eaten, drinking, something else differently to prevent this? And so we naturally go to a kind of a blame and shame perspective. Yeah, the
Scott Benner 18:19
blame, it kind of orders things, right? Like, everything feels chaotic and but if you've got something to blame, then it's like, okay, like, the amount of times I'll interview somebody that's had diabetes for 20 years, you can still hear burning in their brain. Like, why did this happen to me? Like, it's so interesting. 20 years into it, and they sit and talk about it, and they can't hide the fact that they're still wondering. You know, they'll say something, like, I was 27 when this happened. Like, why did it happen? I was 27 like, somehow, that's important. Like, that they were 27 or I was 50, and it happened, I can't believe this. Or she was so young, that's not right. Or, like, how does a baby get sick? Like, you hear them ask that, but they're all asking the exact same question, right? And trying to find out, Oh, who to blame? So that we can start to move forward again, we have a bad guy. Now, if there's a bad guy a reason that I'm not the problem, or the kid's not the problem, or the body's not the problem, it's the thing we can blame. Is that. Does that make sense?
Erika Forsyth, MFT, LMFT 19:18
Yeah, or the way we even talk about our body as separate from our mind, right? Like my body failed me, even in that statement, we're kind of separating ourselves where our mind and body are actually together, yeah, like we're in and this initial stage of blame and shock like that is part of the body grief. And as I mentioned, I think it would be really exciting and awesome to kind of dig through these concepts, maybe in another episode, but this idea of anger, of blame, that's really normal. There's nothing wrong with that, that is part of the body grief stages, and
Scott Benner 19:54
it's hard for people to just sit in a feeling right like. Whether it's like helplessness or grief or some sort of sadness or something like that. So you blame something, and it actually helps you not to have to just in the, I guess, the wash of not knowing there's like an abyss and nobody, no, it's hard to sit in the abyss and just let it pass. Yes, when
Erika Forsyth, MFT, LMFT 20:16
you're trying to make sense of it, that's just, it's part of, like, even if you were to come out and talk about, like grief, kind of the normal five stages of grief you're in the kind of bargaining stage, right? Like, if only I had done this? What if this person didn't cross the street at this time? Like it is part of your body and mind going through all of the emotions associated with
Scott Benner 20:41
loss, right? And is, and time is really the answer to that issue. Like, I mean, you can find ways through it, like blame something or whatever, but time just has to pass so that the emotions aren't so raw, and then you kind of can go back to, I'm gonna say something really sad. Hold on a second. I've been really stunned as an older person now, realizing how time can make you like can separate you from people who have passed on, no matter how much you kind of want to hold on to them, or their feelings or like the stuff that's happened to them. The truth is, is, if you get through enough time, and I think, and if you're healthy enough to feel the feelings around it, the kind of shame of that is, is that the end of that process, is you not really thinking about that person as much anymore, and like, that is actually the healthiest thing for you, right? Because you can't, like, you know, you can't bring them back, kind of a thing. And anyway, this struck me the other day when my I thought of my friend Mike. I couldn't remember how long he's been gone, and like, I found that, like, instantly I was almost upset at myself, but at the same time, I felt like, well, that's good, because I guess I've worked through everything. It's like, come from his passing. Like, for me, I'm not struck with helplessness or grief or sadness or anything like that anymore, like over his passing, like it's a thing that's it really is just a memory now, I don't know, like he's, he's a memory now he doesn't, he doesn't exist the same way that he did before. Anyway, I was thinking about that, and then I thought, oh gosh, that's gonna happen with my mom someday, because I'm not there yet with her. There'll be a day if I if I'm lucky enough to live long enough, I won't miss my mom the same way I miss her today, or the same or the way I did a year ago, or something like that. I said it to a friend of mine. I wish I could remember exactly what I said to her, but I'm going to see if I can pull it up real quickly. I don't think she would mind. It was so crazy. This was around her birthday, we were like, talking about her birthday, and I just out of nowhere, I said, I said, you know how you can't remember how long it's been since your cat died. One day people will forget you too. Have an awesome day. That's how I said Happy Birthday to her. But it made me think of all that while she and I were going back and forth, just the strangeness that I don't know, like, the longer time passes, the more it fades from your thoughts, and that that's just very human, and it's going to happen, but at the same time, like, I use that same comfort to get through things like this too, like knowing that, like maybe sitting in this is the best thing for me, as long as I don't spin off my axis while I'm dealing with All of it. I don't know that's a long way to go. I'm not sure if I am helping the conversation or not.
Erika Forsyth, MFT, LMFT 23:25
So Eve, you're able. I mean, that's kind of like you're kind of giving yourself hope and perspective, even reminding yourself with with Mike, wow, it has been a long time, but you couldn't remember how long. And I remember, or I imagine, that at one point it felt so overwhelming the grief and loss that you couldn't think of anything else, right? Or it was hard to function, I don't know, or whatever, with your mom, that's actually a really kind of a coping mechanism to remind yourself, as hard as it feels now in other areas of your life, where you have gone through all the grief stages, you're giving yourself hope that, okay, it won't feel as hard as it is right now. Yeah, and
Scott Benner 24:07
I think that really applies to the diabetes stuff. Yes, you get diagnosed, and it, like you said, like, maybe, maybe society doesn't let you mourn it like a death, but it certainly feels like it, it's the death of possibility, right? Like, or at least your idea of what was coming like you have, everyone's got a picture of what they think their life's going to be. And as soon as this happens, everyone's first thought is, oh, is my life going to be the same as I thought it was? And the truth lies somewhere between, yeah, there's no reason it can't be and probably not. Like some of it's going to be different, and some of it's going to be absolutely no different at all than it was going to be. But you can't have an experience and not be changed by it. That's for certain. Anyway, I'm so sorry.
Erika Forsyth, MFT, LMFT 24:50
No, no, well, I think that's actually a good segue into, you know, when we have talked about it in the past, we would say that's, that's part of the grief process. Mm. I hope as I continue to read more about the book and understand that, like as we name that it's body that is body grief, not only for the person diagnosed with diabetes, but if we move into talking about kind of the partners, or CO parents, the primary caregivers, that is also body grief for not only themselves, but for their child as they kind of experience that sense of loss, of how they envision their child's life to be. And I know we talked a lot about that in the caregiver series, but that sense of wow, I really, I nurtured this child, I cared for them, I burgered them, or I adopted them, and I've fed them, and I envisioned this, this path for them. And now with this diagnosis, there's this sense of loss and and perceived loss of how their child's life will be differently from what they envision. So that is kind of, I would say, body grief through the lens of the caregiver.
Scott Benner 26:05
Yeah, that's something you're not wrong. I mean, you know, we'll talk about, I guess we should move on to partners and CO parents. Yes, yeah.
Erika Forsyth, MFT, LMFT 26:12
So obviously, from diagnosis and beyond, kind of how diabetes impacts the parents, the caregivers. Whether you're a single parent, your co parenting or partners, there's the obvious changes in in your work patterns, your sleep patterns, physical and emotional intimacy. There's the division of labor. There might be increased conflict. There might be a question of, like, what kind of parent can I be? Can I do this kind of questioning your capability? And so all of those things, those start immediately right, even in the hospital, and continue on, and how we talk about it with the disenfranchised grief for the parents. I like this quote. We mourn the spontaneous life we had before, but it's hard to say that out loud when your kid is alive and you're supposed to be grateful that sense of WoW, our life has changed. No one really understands it, but we're supposed to be outwardly grateful that now we have a diagnosis and we have an answer. Or Or, how often do we hear, Oh, well, you've got a CGM and an insul pump. Doesn't that make it easier? Yeah, all the time we're supposed to hold this, yeah, we're grateful that they're alive. But yet we know that it impacts all so many layers,
Scott Benner 27:35
right, right? It's, it's that same societal thing, like, you're, you're still alive, so just you can't, you can't complain, right? No, no, there's a lot here to be disappointed by. There's a lot here to be concerned about and to get ready to try to impact and affect and and then, on top of all that, you don't really know what you're doing, and nobody's you know. You probably haven't had diabetes explained well to you, and if you have, it's still probably like scrambled eggs in your brain. You can't really think about it correctly, and so every minute of every day is uncertainty. And on top of that, this other stuff. And like you said, like you're, you know, you're not supposed to complain about it because, like, everybody's alive. This is awesome. Like, you know, could have got hit by a car today, but this happened instead that that sort of feeling also hard to ignore, that a lot of people will never be hit by a car and never have diabetes, right? And how come I didn't get to be that person you know anyway,
Erika Forsyth, MFT, LMFT 28:27
I think there, even with this disenfranchised grief, could be even nuanced within two partners, or if you're you know, separated or divorced or co parenting, you know how much you take on who is the primary caregiver and manager of the diabetes, and how does that change over time? Sometimes or oftentimes, there can be a kind of different balance and who does more oftentimes that's really normal and natural and works for families, but there can be kind of further disenfranchised grief around the individual who is taking on kind of the brunt of the responsibility of caregiving
Scott Benner 29:09
that can show up a lot of different ways than people to the body grief, right? It's not just, I mean, you've mentioned a number like anger, shame, you get depressed, right? Some people feel a numbness. It can affect your mental health, sense of identity. I'm imagining confidence that you have out in the world, probably socially, your self image, like it's crazy, that it's not crazy. Crazy is, like, obviously the wrong word, but it's as a an idea that you're just presenting to me now, like, I understand why it's called body grief, but at the same time, like, I can see why that might not make sense to somebody until they really understand the way you the way that grief hits you.
Erika Forsyth, MFT, LMFT 29:49
Yes, so I think, well, the way the author, Jane Mattingly, defines it is that body grief is a universal experience, and it happens to anyone. Living in a body which is all of us. And it can be, it can look like so many different things, but it's basically a sense of loss, a loss of freedom, she says, a loss of control, a loss of safety, or a loss of hope. So if we're looking at this from the lens of the person diagnosed there, you might experience all of those things right at different stages right in your life, with diabetes, the loss of freedom, loss of control, loss of safety, loss of hope, and for the caregiver, you might experience that too, particularly if you are managing, if your child's younger, most of it, I think
Scott Benner 30:38
it's important what you just said, too, that it's not like it all happens at once. You don't get diagnosed and have, like, a bad day or a bad month or a bad year, and then it's over. You could wake up 10 years from now and have one of these feelings, yes, yeah. Okay, so it's yeah, a thing to be aware of. And also, you know, when we go back to the topic of, how is this impacting the family, and I think about, like, where the topic came from, which is people online saying, I wish people understood how this impacted my family. I don't think they were even thinking that, you know, when they're asking that question online, or when I was posing it to you. I know I wasn't thinking like this could be very slow waves like this could hit you, and then three years could go by and you'd be okay. And then it might another piece of it might touch you again, and then you might find your way past that, that could continue through your life or not really like and how do you even know when it's I guess you don't see it coming either. Probably just gets on you, at least before you were diagnosed, and then you felt bad. You're like, Oh, I got cause and effect here. But you know what happens when seven years from now, you just suddenly feel like I don't want to take care of myself anymore. I hate this. I'm not doing this, you know? And then people call that burnout. So, oh,
Erika Forsyth, MFT, LMFT 31:47
you're burned out, right? So, yes, so, I mean with, with burnout, that is so now I would like to call that also the body, the grieving of the body, and how, yes, you're burned out from doing all the things that we need to do to keep ourselves alive, but connected to that is the sense of loss around why can't I just eat something and not think about it? Why do I have to do all these things, I guess, with with the grieving, and whether it's burnout or maybe all of a sudden you have a complication from your diabetes, or you get held up at the airport. I mean, it could be really simple, right, but painful. You can have that moment of like, dang, right? Why do we have to deal with this? So
Scott Benner 32:33
all the other out front arguments like the listen. You know, the most popular post on the Facebook group last week was understanding why the TSA checks your devices to see if they're explosives. In my wildest dreams, I would not have thought that I'd put up a post about that, and it would be as popular and well and but there it is, like it's, you're living your life. You're doing great. We're going away, blah, blah, blah. This is all good. We figured out this. We can Bolus for that. We're all packed up. We know what to do. You gotta swap my what, because you think what, and then there it is. Right now, there's that that grief hits you again. Oh, I am being pulled aside because I have diabetes. I didn't ask for this. I didn't want this. But yet here I am, and I'm being reminded of it again, and then you re open all of the misunderstanding in society again, like it's it all comes rushing back this person swabbing me doesn't understand what I've been through, or my kids been through, and do I want to explain it to them? No, I don't, but I might have to, or I'm going to end up missing my plane and like, oh, it just it gets Oh, look at this. These conversations are great.
Erika Forsyth, MFT, LMFT 33:40
And just because it happens maybe one time, right? Like you might, who knows what the other factors are when you're walking through that X ray machine, where some days it might feel extra painful, yeah, and in other times it might just be like, Oh, extra five seconds. Move on, put my shoes back on. And
Scott Benner 33:59
also, it might never happen again, but your dad might be a dick at the airport for the next 10 years, because in the back of his head, he's like, waiting for this thing to happen. He knows all the other the feelings and the that are gonna come from this one like, one moment, even just the dread of, like, is this gonna happen? Like, am I gonna get pulled out of this line? Am I not? I can't believe I didn't. Then you get to the next place, then the next person grabs you, or whatever. Oh, wow, this is very interesting. Do
Erika Forsyth, MFT, LMFT 34:25
you want to do under what? For the first time ever, I didn't have to do that, and I and we plan I go first before the next three family members in line, because I know I'll take an extra few minutes. And I went first, anticipating. And they didn't ask me to touch my pump, but I was wearing the new Moby ever like they were like, Okay, you're good. And I kept walking. I didn't touch my Dexcom or my pump.
Scott Benner 34:49
Erica turned back, and she's like, how do you know this isn't a bomb? You people aren't even doing a good job. Yeah, I know. I was like, Wait, aren't you gonna swap me? I need to be swabbed so you care about the plane. I'm. Sometimes,
Speaker 1 35:00
yes, I could lean that way, like, Wait, come on, check.
Scott Benner 35:04
I swear this won't vlog. Test it. Test it. Go ahead. This conversation is really interesting to me, because it should be to anybody who's listening, actually, I hope. But the idea that, like, there's little grenades all over life that are waiting to blow up in front of you that you're not aware of, but yet, somehow there's this thing buried in the back of your brain that knows that this is gonna be, like, it's that's why, like, when a device errors out of nowhere, it's so annoying. It's not because, like, I gotta pop the thing off and fill up another thing and slap it back on like, That's bullshit. It only takes a couple minutes. Not a big deal. It's the waiting to get slapped in the face for no reason, like it always exists a little bit. And it's funny, because Arden had a pod error the other night, the middle of the night, and I get a text from her dad my pot error, I'm so tired. And I was like, okay, and then I fell back asleep. And then an hour and a half later, we woke up and her blood sugar is, like, 320 so I went downstairs, I got insulin, and I put it in a pod, and I brought it up, and I woke her up, and I'm like, alright, and I'm sorry I fell asleep. Your blood sugar is really high. Like, we're gonna have to swap this and, like, make a pretty big Bolus. And then I realized, if we're gonna make a really big Bolus, that's great, but if the Bolus doesn't work, she's gonna keep going up. So now I'm gonna sit up and wait to see if the Bolus works. And now that's four in the morning, and now I'm up till 6am now the sun's coming up, and I'm pissed because the sun's coming up, but I haven't gotten any sleep yet. And all of that, like, you know, happens we live through all that. And you say, oh, Scott, that sucks. Like, but I've been through that before. Like, I would say that, you know, I don't care, whatever. It's fine. But then the next day, she was going out somewhere, and I said, Is there any chance you'll stay the night at your friend's house? And she goes, No. And I said, You're sure, because sometimes she'll go to her friends and then spend the night not say and I actually said out loud, because you know, no one expected that pod not to work last night. So if you're going to spend the night, you got to take spares with you. And she looked at me, and she was like, I'm not spending the night. And then she left, but she was pissed, like, and I was pissed. We were all pissed because you're trying to plan for getting slapped in the face out of nowhere. Like, really, like, that's what it feels like, right? Like, it feel, it feels like somebody's gonna come up to you for no reason whatsoever, and just say to you, yeah, I know you haven't thought of this in a while, but yeah, your daughter has diabetes. And then shake you really hard and make it, make everything feel like a snow globe, and then go, Okay, now keep living again. That is what it's like, yeah.
Erika Forsyth, MFT, LMFT 37:33
All right, yes. And in again, depending on where you're at, like, there was fatigue, there is stress. That could be, you know, just a blip on the radar of, like, ah, you know, this thing failed. I'm so frustrated. Or it can go deeper to I can't trust my body, or my body failed, right? And that in this naming it, naming it again,
Scott Benner 37:56
cascade, yeah, yeah. And, you know, the funny thing is, is, I don't find it frustrating intellectually, because she's been wearing an Omnipod since she was four. Like, you know what I mean? Like, this doesn't happen with any frequency. It probably won't happen again this year. It could. And I think that's the piece of it. Like, even, like, putting on a device, like, people are like, Oh, it doesn't hurt. Sometimes it does. But even though it doesn't hurt most of the time, but once in a while, it does your expectation. Every time you do it is, oh, this it's gonna hurt, yeah. And then it doesn't, you go, Oh, it didn't hurt, but you still have to live through the whole process of, oh, this is yeah. All right, what do we got? Keep going, Okay,
Erika Forsyth, MFT, LMFT 38:29
so these are, I know we're kind of doing this, this high level, how it impacts each kind of subgroup, from the individual, discussing the parents, the caregivers, I think the impact between the partners in how you know, the fatigue and the stress and the conflict, and how you know, I want to manage it this way, but they want to manage it that way. That isn't necessarily discussed a lot, and I think that is a really beyond the normal understanding of how a caregiver, how it impacts a caregiver taking care of the child with diabetes, that the partner conflict, or even if you're co parenting and the children are going back and forth, is really significant in terms of how it can impact the relationship between the partners. So just, I think it's important to kind of validate that, and that if you are struggling, though you guys are, you're not alone in that space, and there is hope to work through it. But I think just initially understanding that, oh, this is we're experiencing grief, whether it's disenfranchised, grief, body grief, our own, maybe past trauma is coming out right now.
Scott Benner 39:40
Oh yeah, definitely gonna happen. And it's easy to say we're on the same team, right until you think, the thing you think is gonna save someone's life and the thing they think isn't. And you look over and you go, Oh, that's the girl I've been going out with since she was 20. I love her, but she's wrong, and she's gonna kill the kid and like. And then, boom, you just and you. You're not, usually not, right? Like, usually either thing would have helped. Like, you know what I mean? Like, it's the thing, the thing she thinks would help, the thing I think would help. But you get in that, like, fight or flight situation, you're like, I've had an idea about how to save us. I trust myself. This is the thing we should be doing. And then everybody else is an enemy at that point. So, yes, yeah, I hear you.
Erika Forsyth, MFT, LMFT 40:21
Okay. So moving on from caregivers, partners, co parents to the siblings. Oh,
Scott Benner 40:29
another upbeat topic, yeah.
Erika Forsyth, MFT, LMFT 40:33
So this, I think we can call it kind of like the invisible impact. So you know, a lot of a lot of you are really aware of how the diagnosis impacts your other children, and you, you do your best to kind of give that person time and honor them, that the other siblings, your other children. But it it can and really normal. It's normal for the other children to experience some of that, either their own grief, maybe jealousy, that not necessarily jealousy of the diabetes, although that could happen, right? Like I'm jealous of my sibling having diabetes, because, look, mommy and daddy pay attention to them all the time and and maybe also demonstrate some some either depression or anxiety and their own behaviors, because either a they're experiencing their own grief and they don't know how to communicate it, or don't feel like they're allowed to, or they might
Scott Benner 41:22
be worried it's going to happen to them too, that that could easily happen as well. Yes, I'll take you down to the beginning of this conversation. I told you about the picture at Yosemite. And how is it going to change things that you that there's no way you can like expect, or maybe even sometimes get in front of? And as an example, you know, in more recent years, we've been talking about this stuff in like, you know, in a rear view mirror with our kids. And my son definitely feels like he was ignored. And because Arden needed more help, or we had, there was times that, you know, we'd go somewhere and, like, something would happen, like, oh, we have to stop for a minute till Arden's blood sugar comes up, or we have to change a thing, or something like that. And the amount of effort and time that my wife and I put into over doing it for him to make sure that it didn't feel like that, like once he said, as an adult, like, you know, I definitely felt like you were paying more attention to Arden than me. I was like, Oh my god. How is that even possible? Did you see the brown spots on my cheeks. This is just son from standing on a baseball field. I've been with Cole like every step of the way, at everything he's done and needed us for, and some of the things he probably didn't need us for, and yet his memory is he got a little less than she did. And I was like, Oh, it was so defeating. I was like, because we put so much effort into that not being the case, I don't think like actual physical acts can overcome the feeling that comes and then, by the way, the irony is, what Arden remembers is that we spent way more time at Coles baseball games than with her. And I was like, You gotta be kidding me. Yes, it was like, Oh, my God, I'm like, your a 1c has been in the fives forever. Like, we're ahead of, like, the curve on every one of your health issues. You're doing things right now the people won't be doing as a matter of course, for 10 more years with GLP medications. And look how well it's helping it. That's because of how much effort and like attention we've put but she doesn't see that as her she sees that as the diabetes, right? And like, and at the same time I stood like this. The rest of this is from this time I stood in a softball field, right? Boy. It just made me feel like Erica, like, no matter what you do, the opposite is going to be the thing the person wanted. And I know that's not true, like, right? Like, but it just feels like, it feels like no matter what you do, someone's going to tell you the thing you didn't. Do, and that that feels like a very human response, like this was not perfect. Let me tell you about the stuff that I still hurt from. It doesn't mean I shouldn't have done the things that we did right like, I think what we did was great, and trust me, had we not done them, things would be terrible, and things aren't terrible right now. Like, they're good and everybody is adjusted and living their lives as well as they can, based on the idea that one of us got a lifelong illness that has to be managed day to day. Like, seriously, like, I think we are is good of a place as we could possibly be. But there's no doubt that if I get in a time machine, go back to Yosemite, take a magic pill. Arden doesn't get type one. This didn't happen, but I would bet you that some version of it happens. Like, you know what I mean? Like, I would bet in another universe there's a family like us where Arden doesn't have diabetes, and the son is saying, I don't know, I remember you spending much more time with her. And her saying, I remember you spending much more time with him. I don't know that you can avoid that. Maybe
Erika Forsyth, MFT, LMFT 44:41
I don't know, right? Is that that might be just normal sibling.
Scott Benner 44:46
Maybe that's just the price of doing business,
Erika Forsyth, MFT, LMFT 44:50
right? But then I'm also thinking about, you know, as kind of thinking about your children where they are in their life stages. You could also like that is part of you. His disenfranchised grief, right? Like, that's and that's also maybe part of his kind of perceived not again, it wasn't his body that was diagnosed, but he experienced a sense of loss, yeah, to name that for him, like that. Like, wow. Like, cool. That's part of your disenfranchised grief, that feeling like we spent more time with Arden and trying to keep her alive, that, you know. And so it doesn't make it some bad or wrong. And part of doing business having more than one child,
Scott Benner 45:29
we brought this up after we picked our heads up off the table, because it got said, and you just heard like, that was my head just hitting the table. I was like, oh my god, I tried so hard. Like, I can't believe we're still standing here. We did talk through it like we had that conversation. You know, it's much like what we talked about earlier, is, I think this is the feelings, right? Like this is the part where you're sitting in the abyss of the feelings, and you have to live through it, and one day he won't feel like that about it anymore, but that day could be 15 years from now. It might take him having his own kids to fully, you know, get through the process to figure it out, or whatever. I'm just trying to stay alive long enough for somebody to come up to me afterwards and go, Hey, not bad. And I'll go, thank you. And I don't even know if that'll happen. I'm sure, I'm sure that a lot of people don't get to live long enough to watch their kids come full circle. And then have to, on top of that, realize that the last bit of this full circle is to go find your parents and tell them, hey, I get it. Now. That really is what you're waiting for as a parent. Like you're waiting for somebody to come tell you, you know, I saw what you did there, and I get it pretty much it. Or, thank you, you know. I mean, that would be a bonus. Like, I would take a meal even, and no, thank you. Like, I mean, just like, especially with what the restaurants are costing nowadays, this one meal and a nod, like, it just, I see what happened here. Thank you. Yeah, I don't know, like, and not everybody gets to live long enough to close those circles and and not everybody gets to it, and even tries so
Erika Forsyth, MFT, LMFT 46:58
well, I know we work so hard, right, as you did in trying to attend to both of your children's needs and give them what they needed, emotionally, physically, logistically, medically, right? And we work so hard to prevent and protect them from pain, but they both have experienced less right and pain as a result, and that's okay, yeah. Like he is so even as he reflects back, gosh, you spent more time with Arden, perhaps he doesn't feel that significant loss as much as he did, maybe at moments when he was a little boy. But also, it's okay, like it's he, he worked through it. He can communicate. You can validate that you love him equally.
Scott Benner 47:42
It's important to live in that idea not to look backwards and say, Oh, me, you mean, you mean to tell me there was a 14 year old boy that felt like that. I didn't know. I hear what you're saying. And I would implore people to not look backwards like once you've gotten out of a problem, don't go back and punish yourself about it again, if you can at all help it, because, like you said, like he is okay, you know, like he's not struggling. And if he was then voicing this stuff may be the only way to pull him through it, too.
Erika Forsyth, MFT, LMFT 48:12
And you could even, I think, whether you're on that kind of the other side of it, so to speak, where you guys are maybe, or when they're younger, too. I think giving the siblings permission to have space, to hate diabetes, to like I think that can be maybe scary for some families to invite or give permission to the siblings to say it's okay, like we see that you're you're, maybe you're not as you're we're not giving you as much time, or you feel like we're not we're abandoning you, or it's okay, like, let's all you know, going back to letting the siblings write the letter to diabetes and how much they hate it, yeah, I think just giving everyone permission to have their sense of grief and loss around the diagnosis, it's going to look different For every single family member at different ages and stages, but giving them permission, I think, is a big step and then and naming it.
Scott Benner 49:08
Yeah, awesome. Anything left for siblings?
Erika Forsyth, MFT, LMFT 49:10
I think, oh, just one thought of, you know, caregivers who have siblings, kind of, I know, but let's get one step beyond in terms of the family system. We're thinking about for caregivers who have adult siblings who either are really close, or maybe not as close, I know that can be really impactful sometimes, where you might look to your immediate family members for that love and support and understanding, and that can be Another can be really helpful, but also that sometimes can shift that dynamic momentarily, right? Like, let's say you're you have your your adult siblings, and you've been so close, and you guys went through so much together. No one else knows what it's like to grow up together with your parents, and then your one child gets diagnosed, and they might not understand it. Right to the level that you need them to. So I think that's just that might not happen all the time, but just I felt like it was significant enough to name,
Scott Benner 50:08
feeling let down by that too, right? You could turn to that person, they could be like, ah, at least it's not cancer, and you'd be like, yeah, oh my gosh. That's not what I needed from this, right? Erica, before we move on to grandparents and extend a family, true or false, if we all just had autonomous sex style and a cave to live in by ourselves, we'd feel better.
Speaker 1 50:27
Oh, we'd be so lonely, though. You know, maybe the dog can talk. My
Scott Benner 50:36
gosh, you picked the weirdest profession, like trying to understand the inner mingling of people's thoughts and emotions is it's a never ending bowl of spaghetti. It feels like you know, all right, all right. Grandparents and extended family older generations may handle the shock of medical diagnosis. Go ahead, they may not fully understand what
Erika Forsyth, MFT, LMFT 50:57
right? So they, I think we hear this a lot of they have their own sense of grief, again, whether it's the disenfranchised grief, where they might have this image and vision of how they want to take care of their grandchildren, like, you know, be that, be the grandparents that show up with the candy, be the grandparents that kind of just like the carefree, like they worked really hard, You know, I don't know, kind of stereotyping, but I hear
Scott Benner 51:23
what you're saying, like I had kids so that their kids would bring me a beer. That's all I was was hoping for,
Erika Forsyth, MFT, LMFT 51:28
right? And so they, they have their own sense of or maybe they're, they're local, or maybe they're multi generational household that can cause a lot of stress. Of, you know, they might not understand it. So then they kind of go through their own sense of either failure or disappointment in their identity as a grandparent, of, how am I going to support my child? How am I going to support my grandchild? I've worked hard all my life so it and that's totally fair and valid. So just naming that sense of of grief, they might look at their peers, right grandparents who just, you know, get to show up, be carefree and but learning either a new way to if they are hands on, you know, grandparents or kind of multi generational caregivers, it's a lot, right, particularly how technical and mathematical and all these things that are really hard to understand that might be really challenging
Scott Benner 52:25
right now, I can tell you that the stories that I hear from people about their parents don't know what to do, and then that's frustrating to them, and you never really stop to think about how frustrating it is to the grandparents, right? Like the people who, by the way, your kid is that has diabetes, they feel bad for their children, and then they feel bad for their grandchildren. And then on top of that, even though society would say we're not allowed to, they have to feel bad for themselves, like, right for the disenfranchised grief, they have to be like, Oh, but they probably have body grief over hell, over what's happened to you, over what's happened to their grandchild. And then they get the disenfranchised grief as well over what happened to their lives. Yes, because this isn't what I expected. Yes, I will tell you this my father in law, who has passed away recently. He was not a very emotional person, like giving with his feelings and his thoughts, but I could tell that once he saw the effort we were putting into raising our kids. He stopped thinking I was his head. And I thought that was kind of nice, like, like, you knew, like, at first he just was like, this, you know, I mean, listen, my daughter has a boyfriend. I know what he was thinking. Like, you know what I mean? And, and then, even after you get married, it doesn't just magically go, I'm like, still, some guy pawned his daughter, you know, when's this guy going to show his value? And then, you know, we have kids, and we're doing a at least, listen, as good a job as we could do. And probably familiarly to my, my father in law, we we probably look like the parents of the year, you know what I mean, like, compared to what he grew up with. So he's like, all right, these two are taking good care of these kids. I think that's the first time he saw me as not like, not predatory, but like, not valuable in this like, you know what I mean? Like, until then, I was just the guy taking advantage of his daughter one way or the other. Like, and by the way, I was a stay at home dad, too. So go back a couple of generations, I just look like a sponge to him. And then he's like, one day he said, he said to us, like, you guys do really good job with these kids. And I was like, Oh, thanks. And then I could see him, he started treating me differently. It took for that to happen, but still, in all, he didn't know a damn thing about Arden's diabetes. And, yeah, I mean, I didn't see that. He even had the bandwidth to try to understand it, to be perfectly honest, like he kept his, you know, distance from it so and that I'm sure was hurtful for my wife, you know, anyway, again, sex doll in a cave, and you're saying, and somebody to talk to, that's all we need, yeah, and then I don't have to, like, I don't have to coexist with other people's feelings and emotions, honestly, you know, I was thinking as as you were talking, like, even if you could fit. Saw this. Like, if you could snap your fingers and make it so that people didn't feel this grief, or if they did, somebody else didn't judge it or not be supportive of it. Like, I don't even know what life would like you ever think of like, What would life be without all this? Is this life like, Do you know what I mean like, is, is this? Is this the thing we're doing, like, the trying to figure each other out and be as happy as possible and supportive as possible. Like, is that the whole game?
Speaker 1 55:27
Oh my gosh. Erica, well, I mean, yes,
Erika Forsyth, MFT, LMFT 55:31
oh my gosh, yes. I think we all want to be as happy as possible. But also, grief is something that that can't be fixed, and that's, that's the hard part, right? But it can be felt. It can be named. It can be felt. It can be we can offer ourselves and each other empathy and compassion, and that's moving through it, right? Yeah, but we it's hard to wrestle with and hard to feel.
Scott Benner 55:55
It's difficult for me. I can only speak for myself personally that to know that life, it feels like you're trying to mold something out of clay, but we never get to the part where we turn it into something. We just keep molding it. Like, does that make sense? Like you just like something happens and you go, Okay, I gotta live through this. I have to try to understand it. I'll apply it my life. Hopefully people around me won't get sick of me while I'm trying to figure it out, or I won't be snippy with them, or whatever happens. Oh my God, look. I wake up the next day. We're all still here. This is awesome. Nobody died, nobody got hit by a car. Then the next thing happens, the next thing happens, and and then you start, you know, this is very trite to say, but as you get older, it all starts to make sense. And then as soon as it starts to make sense, you are hit with the idea of, like, Oh, I'm gonna die. Like, I've just starting to get this figured out. Like, I'll joke on the podcast all the time. I've only been an adult for like, five years. I'm really starting to understand things. I almost joked with you earlier, before I had this thought that we only had two kids, and I think that's pretty good, like, because it was a lot to deal with, but if you gave me a third one, I'd be an awesome dad to the third one. Like, I really think I could get it, like, really, like, fix a lot of, like, hiccups. And the irony is that if I did that, the other two would be pissed, because they'd be like, Oh, sure, you know what I mean, like, when, like, you know, like, when, yeah, I don't know. You look up in some famous guys in his 70s, and he's a good dad, and you see his 30 year old son is like, well, he was a coke head. When I got him, I actually thought for a second, like, I bet you, almost effortlessly, I could do a 3000 times better job raising a baby right now, but then my kids would be upset with me, and they'd hate the kid over it too. Sex style in a cave. Is someone to talk to? Is there anything else, like crackers? Maybe we just need crackers and a bottle of water, right? We'll do it. Okay. All right, all right, all right. Do you have anything you want to save you for research?
Erika Forsyth, MFT, LMFT 57:47
No, oh yes, I do. I think it's easy. We, as we kind of validate and and we kind of define, identify, define and validate every person's grief journey in relation to the diagnosis. I think this is understood, but I think important to say, we never want to make the person with diabetes feel like it's their fault. That can be absorbed pretty easily. If I'm thinking of you, maybe younger children, you know, if they're seeing everyone cry and grieve, and I'm not necessarily. I'm not suggesting you go hide in a corner, but as you do, kind of validate one another's or kind of in the multi generational family system, impact of diabetes that we it's about the diabetes and that it's not, it's not little Joey's fault.
Scott Benner 58:36
Yeah, yeah. Don't. Don't put that on your kid. Then don't worry, your mom will put it on you anyway. What'd you give? Him? Awesome. Mom, thanks, right, right. Yeah, it's great, mom, really, I've been waiting 40 years for you to come through. That's what you got, huh? All right, listen, people are laughing right now because their parents
Erika Forsyth, MFT, LMFT 59:00
or they're working hard to understand it.
Scott Benner 59:02
You know, what the truth is, is that I believe that, I think, even, like, the crappiest parent that somebody had, I think in their quiet moments, are thinking about, like, like, What didn't I understand here? Like, what did I not do or, and, you know, it's a completely other conversation, but I think that, you know, we ask, it's interesting that there's a there's a spectrum of intelligence and a spectrum of emotional intelligence, and yet we expect everybody to do exactly the right thing all the time. And I don't think that leaves enough space for appreciating that people are often doing the best they can, and that you could, you know, if you could just give away your expectations for five seconds, you could find a way to love that person for, you know, what they tried to give you? Because it's not going to matter, like, I'm a my kids are going to, you know, are going to have a moment where they're like, I got a guy's a moron. They did everything wrong, and it's just going to feel that way. So I try to remember that, because. Because I figured that out early enough in life to tell my mom that I that, you know, the things that we talked about earlier, and it's very freeing for me as an older person. So I hope everybody gets to that spot in enough time to tell somebody, yes, you're awesome, especially to put up with me, although I think my I think I am making a good point. But for people have so many thoughts and feelings like there's a lot to balance.
Speaker 1 1:00:27
It really is all right. Hold on a second. Thank you.
Scott Benner 1:00:38
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#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.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox Podcast.
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.
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#1568 Best of Juicebox: Small Sips Tug of War
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Meal bolusing simplified (I'm not kidding)
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