#1877 Agency and Anxiety Part 2
Therapist Erika Forsyth returns to explain the difference between autonomy and agency. Learn how small, consistent actions in your diabetes management compound over time to reduce anxiety and shame.
Key Takeaways
- Agency vs. Autonomy: Autonomy is the freedom to act without constraints, while agency is the ability to skillfully operate and affect outcomes within existing constraints (like a diabetes diagnosis).
- The Anxiety Response: When agency feels low—when you feel like your body is failing you regardless of your actions—anxiety spikes, often leading to either hyper-vigilance (over-correcting) or total avoidance.
- Building Agency Through Knowledge: Time and experience are the ultimate builders of agency. As you learn patterns and see how your actions positively influence outcomes, your anxiety naturally decreases.
- The Compound Effect of Effort: Much like folding a piece of paper 42 times to reach the moon, small, consistent, good decisions in diabetes management compound over time to create massive positive results.
- Shame Reduction: As your agency grows, you stop viewing out-of-range numbers as personal failures or indicators of your self-worth, and start viewing them simply as data and information to act upon.
Resources Mentioned
- Touched by Type 1: touchedbytype1.org
- Tandem Mobi System: tandemdiabetes.com/juicebox
- Eversense 365: eversensecgm.com/juicebox
- Juice Box Podcast Pro Tip Series: juiceboxpodcast.com
- Wrong Way Recording: wrongwayrecording.com
Introduction & Show Sponsors
Scott BennerHello, friends, and welcome back to another episode of the Juice Box podcast. Diabetes can make it feel like your body is just happening to you, and that's where a lot of the anxiety lives. But as your skills grow, something changes. You start to see that what you do actually moves the needle. This episode is about that shift from feeling out of control to knowing you can respond.
Scott BennerIf your loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the Bold Beginnings series on the Juice Box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five 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 Juice Box Podcast.
Scott BennerThe bold beginning series and all of the collections in the Juice Box podcast are available in your audio app and at juiceboxpodcast.com in the menu. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
The episode you're about to listen to was sponsored by Touched by Type One. Go check them out right now on Facebook, Instagram, and, of course, at touchedbytype1.org. Check out that programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes. Touched bytype1.org.
The podcast is also sponsored today by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.
Scott BennerToday's episode is also sponsored by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com/juicebox.
Agency vs. Autonomy
Scott BennerErica, we are back doing agency and anxiety part two. Just a two part little quick series. Right?
Erika ForsythI think so. I think it might be just a two parter. Okay. But we'll see.
Scott BennerWhere where where do you wanna start? I wanna get you right back into your conversation. So
Erika ForsythOkay.
Scott BennerWhat do what do you wanna do?
Erika ForsythSo thank you. I would like for us to first kind of just review agency and the definition. And as I was thinking about our conversation from, the first episode, I wasn't sure if we actually defined a differentiated agency versus autonomy.
Scott BennerOkay.
Erika ForsythSo I thought we could do that first and then talk about the kind of interplay between agency and anxiety and how agency may amplify or buffer anxiety when living with diabetes.
Scott BennerLet's do it.
Erika ForsythSo okay. So first, you know, I know we were as we were trying to define agency in the prior episode, it was we realized it was it's difficult. You know, you kind of have a an a felt knowledge of what it means, basically, that you can affect and influence outcomes, and you have the power and the capacity to do so. You can affect change in your life, but it's within kind of constraints and limitations. And that is different from autonomy where you have the freedom to act according to your own rules, your own desires, and you aren't feeling or experiencing those external control or outer, you know, constraints.
Erika ForsythSo I like the kind of to think about agency is about how you operate within constraints, and autonomy is about where you operate in the absence of constraints.
Scott BennerOne example, I don't know
Erika Forsythif it's just perfect, is autonomy. If you're if you're playing a game, autonomy, like a board game, let's say Mhmm. You might have the power to change the rules of the game using your autonomy. But agency is the ability to skillfully win within the existing rules. So you have these kind of constraints and boundaries, and you're making choices that will affect an outcome that you are hoping for.
Erika ForsythBut autonomy is like, well, I don't like this these rules, and I have the independence and freedom to change them so then I can affect change or feel independent in my life.
Scott BennerYeah. I'm
Erika Forsythfollowing up. It's not it's not a perfect example.
Scott BennerNo. But I I'm following what you're saying. There's some situations you're in that you can change, effectuate, get out of, and there's some that you're in that are are concrete. They're not gonna change, but you can still exist within them when you use agency for, when you use autonomy for. Yes.
Scott BennerIs that right?
Erika ForsythYes. I think that's that's good general ex you know, reflection.
The Anxious Response: Avoidance vs. Hypervigilance
Scott BennerOkay.
Erika ForsythSo when we are thinking about getting diagnosed with diabetes, one of the first things you experience is the person who is diagnosed and and the caregiver and the family system as a whole is that loss of autonomy. Right? Because you feel like the the life you once knew, the freedom to, you know, intuitively eat whenever you want you know, all of the examples we can think of, that is immediately lost, and you feel out of control. So that that is autonomy. That's a loss of autonomy in that in the original diagnosis and probably also agency.
Erika ForsythBut loss of agency is experienced at a diagnosis or stages of change or probably anytime you feel like you're you've thought you can affect an outcome, and it is not what you expected. So when you, you know, you leave your your doctor's office or the hospital, you have your insulin to carb ratios, you have your your target number. But when you in the beginning and, again, it's stages of change or or stages of burnout. When you anticipate doing a or x, you don't always get y. Mhmm.
Erika ForsythRight? So you might get a, b, or c, and that might be as the honeymoon or growth hormones, etcetera. So the system and the procedures and the and the outcomes that you are expecting feel really unpredictable, and in anxiety will increase because the consequences feel immediate.
Speaker 3Mhmm.
Erika ForsythSo we're gonna get into kind of now this interplay between when agency is low, anxiety is high and vice versa. But I'll I'll pause there.
Scott BennerOkay. When agency is low, anxiety is high. And when you think about it on the the scale of diabetes, you don't have any autonomy to change diabetes. Right? But you have some to change, what, your own actions?
Scott BennerOr maybe I should just let you move on before I ask my question.
Erika ForsythYes. So we'll get there how autonomy is kind of reintroduced.
Scott BennerThat's okay. I'm gonna wait and and and Okay. And get myself more fully formed before I talk.
Erika ForsythOkay.
Scott BennerGo ahead.
Erika ForsythSo in again, I I know I often say in the beginning, but we, you might feel this way at any point in your life's time with with diabetes or from the caregiver's perspective that your the outcomes feel externally driven, and you might experience this, you know, feeling that my body's unpredictable. Whatever I do, I I don't it doesn't happen the way I expect. And this kind of coincides or correlates to the messaging of the perceived body betrayal that we talked about in the body grief series. Right? That feeling of, like, my body failed me no matter what.
Erika ForsythIt's it's has totally abandoned me. Mhmm. And every fluctuation can be interpreted as failure or danger. Right? So that's when your your lid is flipped, like we talked about.
Erika ForsythYou are experiencing every single blood sugar decision. And as you're eating or navigating any of the variables, you might experience that that feeling of of failure or danger. And it actually might right? It might be dangerous. You might be high or low.
Erika ForsythOkay. So your nervous system is interpreting this as, you know, you're you're you're offline, and you're but you're leaning towards this vigilance and threat monitoring. So this is why when the agency is low, right, you're feeling like you cannot affect outcomes or influence outcomes. Anxiety is high. So as a result, you're this is when you might feel the anxious symptoms.
Scott BennerMhmm.
Erika ForsythAnd to try and regain a sense of control, what often occurs is kind of that hypervigilance. I'm gonna try and, you know, just stare at the numbers. I'm gonna finger prick 20 times, and I'm I'm gonna figure this out.
Scott BennerDoes that actually work, though?
Erika ForsythRight. No. No. Yeah. But but it feels like you're doing something.
Scott BennerRight.
Erika ForsythRight? So it's your body's response to saying, I am feeling so dysregulated no matter what I do isn't working. Mhmm. You you kind of often will do two things. Right?
Erika ForsythYou you might lean into the hypervigilance and kind of over control or the avoidance, like, kind of hands in the air. No matter what I do, it is not working.
Speaker 3Mhmm.
Erika ForsythAnd I kind of helpless.
Speaker 3Yeah. Right?
Scott BennerBoth of those decisions, oddly enough, kinda lead to the same place. You you know? Because you the hypervigilance usually usually I mean, some people figure it out, but some but a lot of people end up in a situation where they're staring at it so long and so hard and they're so exhausted, can't make any sense of it anyway. They're still having the outcomes they don't want. And the people who let it go maybe experience a slightly higher a one c or a little more variability, but they don't end up on you know, you can't wish yourself into success either, which is like, I'll throw it up to God and let's see what happens next because what's gonna happen next is your blood sugar is gonna get high.
Scott BennerOkay. Alright. I got that. I'm
Speaker 3I'm ready.
Sponsorship Break
Scott BennerWhen you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a doorframe, sometimes it gets ripped off. I love that the adhesive kinda gets mushy sometimes when I sweat and falls off. No.
Scott BennerThese are not the things that you love about a CGM. Today's episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the only CGM that you only have to put on once a year and the only CGM that won't give you any of those problems. The Eversense three sixty five is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes instead of your CGM with the Eversense three sixty five.
Scott BennerLearn more and get started today at eversincecgm.com/juicebox. One year, one CGM.
Scott BennerLet's talk about the Tandem Mobi insulin pump from today's sponsor, Tandem Diabetes Care. Their newest algorithm, Control IQ Plus technology and the new Tandem Mobi pump offer you unique opportunities to have better control. It's the only system with auto bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options.
Scott BennerTandem Mobi gives you more discretion, freedom, and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandemdiabetes.com/juicebox. When you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's gonna help you learn about Tandem's tiny pump that's big on control. Tandemdiabetes.com/juicebox. The Tandem Mobi system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range, and address high blood sugars with auto bolus.
Building Agency Over Time
Erika ForsythSo that is how sometimes it kind of the the low agency might amplify the failing experience of anxiety, and then the result is that either avoidance or hypervigilance. These are obviously stereotypes, but these are these are the trends, right, that we might experience. So how how does agency increase with diabetes? So over time, you you know, as skills and knowledge and understanding develop, we expect that that belief in oneself and that feeling that I can affect change, the agency will grow Mhmm. Within you.
Erika ForsythRight? As you start to recognize patterns, you learn maybe your insulin to carb ratios better. You're you're more aware of how the variables might impact your blood glucose levels, and that's where agency can become a protective factor. Even within uncertainty, you have an increased understanding in in kind of how you can predict outcomes. You can see how your change your actions change outcomes even though it might not be perfect all the time.
Erika ForsythMhmm. Because your anxiety or the anxious thoughts or feelings are starting to be reduced even though it's not you know, you might get you're not gonna nail it every time.
Scott BennerRight.
Erika ForsythRight? Okay. So your behavior becomes more intentional with that. So you are more mindful with the increased time and knowledge. Right?
Erika ForsythI know we always talk about, like, diabetes is a time. It's a chronic illness that you do learn and grow and benefit from time. Mhmm. And knowledge, right, and experience. So this is actually just wanted to share a quick story.
Erika ForsythI was recently at a a meetup for for grown ups living with t one d, and we were playing a game. And one of the questions was, what's a sign or symptom that you have been living with diabetes for a long time? And there were some some funny ones, you know, like, you have you know, your your storage closet is packed full of all of your stuff. There might be some hard what hard answers, like, might be living with some complications. But the one person who yelled out the word knowledge
Speaker 3Mhmm.
Erika ForsythEveryone just kind of took this we all kind of took a big breath and and then laughed. Like, it is so true that it does come. Time and experience does yield knowledge, but you don't have to wait Yeah. For years and years and years.
Scott BennerIf you just make your way through almost blindly, you will amass that knowledge over time. Like, you just end up having so many experiences. It's almost impossible to ignore, you know, what you're learning at some point. But it's nice if somebody steps in and gives you more and gets you sped up because that loss of time eventually weighs on people. And especially if there's complications, then you start thinking about like, well, now I know it, but if I would've known it before, then this might not happen and that can come with its own set of consequences for you psychologically afterwards, after that all kinda comes together.
Scott BennerBut that's interesting that in that setting that everybody kind of, like, wholly agreed. Like, I have learned a lot about this over time. Yeah.
Erika ForsythMhmm. Mhmm.
Scott BennerIt's a shame it can't be sped up without the time going past. I don't know. Maybe it can be.
Erika ForsythAnd and and what is time? Is it six months? Is it Yeah. Six years? Is it you know?
Scott BennerIt's different for everybody. That's what I've learned after talking to people. Is that some people jump in, some people are handed tools and ignore them for years or don't understand them for years. Then they hear something or have an experience that makes the whole thing crystallize when they go, oh, I got it now. And it just starts to work in a different way.
Scott BennerAnd some people I've seen I've seen some people jump in, through bold beginnings, pro tips, six months later, send me a five and a half a one c and go, I understand it. And I'm like, awesome. Like, that's great. And everywhere in between. So
Erika ForsythRight. And then and what was that that moment for that person that they then were able to digest the education? Were they not in a stage of shock, you know, and and dismissal?
Scott BennerRight.
Erika ForsythWere they ready to hear it? Like, we don't I think that that is the the human element. Right? Like, at what point does the knowledge help?
Scott BennerMhmm.
Scott BennerI ask everybody who gets to that point, can you point to what got you there? What did you hear that made sense? And no one ever knows. They they're just always like, I don't know.
Scott BennerJust one day, it all made sense to me. Everybody says the same. Every once in a while, somebody will say, well, I listened to something or I saw something or someone said something to me and it made, like, something click for me. But overall, it's more about like it the I feel like their answer is I just lived in it long enough that I understood it finally. Like, that's what I feel like their answer really means is that I don't know if you were baking a cake and some people have to mix the cake for a minute, some people have to mix the cake for an hour and I don't know.
Scott BennerThe cake was just done one day and I figured it out. It's really interesting that the human part of it is is pretty fascinating, especially when you look at all this and you see how you can be held back by something that's sort of outside it feels like it's outside of your control. You can be helped by something that might also be outside of your control. You know, you hear people are like, well, if some people handle situations better than others. And for my ten years of asking people, I can't figure out the difference between one and the other.
Scott BennerYou know? That's interesting.
Erika ForsythIt's really something. So I and I'm as you're sharing this, I'm trying to think about, you know, that Free. Moment for me. Yeah. Yeah.
Erika ForsythOf when did I want to understand? When did I feel you know, experience that agency?
Scott BennerMhmm.
Erika ForsythAnd it is almost an undef like, this nebulous experience that occurs.
Scott BennerErica, hold your thought for minute. Arden?
Speaker 3Are you recording?
Scott BennerI'm recording with Erica. What what's up?
Speaker 3No. I was just gonna call you and tell you, guess what? Me and my class just spent the last forty five minutes of our class doing.
Scott BennerWhat did you spend the last forty five minutes doing?
Speaker 3Convincing our professor that it's actually impossible to write five five okay. Five five paragraph essays in our final exam period.
Scott BennerShe wants you to write five five paragraph essays during the exam period?
Speaker 3We're like, that's impossible. We can't do that. And she was like, why not? And this kid is like, well, half of writing an essay is like finding all the materials and figuring out how you're gonna write it. He's like, you want me to three times in my exam period?
Speaker 3He's like, diet he's like, I could maybe do, like, two. And she was like, this isn't making sense to me. And then I was like, I was like, what if you made it, like, two and then do, like, multiple choice questions or something? And she was like, I'm like, oh my god. She's like, I'll reach out to you guys and tell you what we're gonna do.
Speaker 3How about you guys will start at five essays?
Scott BennerI don't know. How long is the exam how long is the exam period? How long is the exam period?
Speaker 3Like, two
Scott Bennerand a
Speaker 3half hours maybe.
Scott BennerI don't know. I mean, that seems like a lot of writing.
Speaker 3I can't write five essays in a day. I was like, is she fucking serious? Anyways Right. I don't know. I I spoke up.
Speaker 3I was like, yeah. I I can't do that. So
Scott BennerWell, I'm interested to see what what comes from the conversation. Alright. I'm Yeah. I'm gonna go. Thank you for sharing this with me.
Scott BennerI'll see you in a bit. Bye. Bye. Well, there's agency.
Erika ForsythAnd advocacy.
Scott BennerYeah. A little bit of autonomy. She's like she's like, maybe I can change my situation. I can't do that. I
Erika ForsythYes. Actually, that's all three.
Scott BennerYeah. Yeah. She was like she's like, I don't think I can do that. I'm gonna speak up and also, no. I wonder they'll probably
Erika Forsythbe sound challenging.
Scott BennerYeah. I mean, five different five paragraph essays in two and a half hours. I don't know. I'd have to think about it. I haven't written that much in a while.
Scott BennerI don't think it would be good. I might be able to hammer out the first pass of it. Yeah. Yeah. Yeah.
Scott BennerI could
Erika ForsythAnd how many words are we talking and pages per essay?
Scott BennerI have to tell you though, I know this is off the track and we'll and make sure you have your finger on where we're at. But
Speaker 3Okay.
Scott BennerIt's just like we're talking to doctors. When they ask you something and you go, no. And they go, okay. Like, if the teacher really knew something, then she would have said, nope. It's five essays, five paragraphs each in two and a half hours.
Scott BennerThis is the requirement. Do it. But she doesn't even know if that's right. Like, does somebody brought it up to her and she went, oh, maybe it's not easy to do. Like, maybe it's not doable.
Scott BennerAnd I I don't know. I just I always feel like that when doctors say something to you and then you go, well, I can't. And they go, okay. I'm like, well, wait. Was it important or was it not important?
Scott BennerNothing. You know? Anyway, I'm sorry. Anyway, that was hard in everybody. She's almost done with her psychology degree, which apparently she's using on that teacher right now.
Erika ForsythWell, yeah, I I also be curious. Yeah. What's what's the standard? Has she always done that?
Scott BennerIt's it's all over the place.
Speaker 3A lot.
Scott BennerYeah. No. It feels like a lot. Anyway, I'm sorry. Where were we?
Regulating Anxiety & Removing Shame
Erika ForsythOkay. So we are talking about as agency increases, anxiety can decrease. Right? So you're having this not only you're experiencing the physical kind of improvement in your management, you're also experiencing this psychological transition.
Scott BennerOkay.
Erika ForsythRight? So you're going from my body is happening to me. My body failed me. I can no matter what I do, I cannot land in range, you know, whatever it may be.
Scott BennerMhmm.
Erika ForsythSo you're having that that low agency, high anxiety, and also high grief, right, with that, which can transition to I'm interacting with my body through skillful action. So you're having active agency and regulated anxiety. And I think it's important that even if you are living in a space of high agency and confidence in your management, it doesn't mean that you aren't going to experience any anxiety. You're gonna have that lived experience. And I know we we know that.
Erika ForsythI just want think it's important to
Scott BennerTo say it.
Erika ForsythTo highlight that. Yes. And so it changes the quality. Right? So anxiety becomes more informational.
Erika ForsythMhmm. And maybe anxiety isn't even the right word there.
Scott BennerThe fear?
Erika ForsythYou be you the the yeah. The fear Mhmm. The lived ex the feeling of being out of control, which is also anxiety. Mhmm. So maybe it is.
Erika ForsythSo it becomes more informational rather than this overwhelming experience where you feel so dysregulated in all areas of your life.
Scott BennerOkay.
Erika ForsythSo yeah. Do you want me to keep going
Scott Benneror pause? Yeah. No. There's nothing to pause for because I'm I'm listening. I just you know, I told you before we recorded, I just recorded today with somebody who I realized I mean, you actually helped me realize when I was talking to him.
Scott BennerI was talking to him about anxiety, agency, autonomy, and I didn't realize I was. I wasn't using those words when I was speaking to him about it, about finding a way to just do better for himself because he's, you know, he's sure you guys will hear it on the podcast at some point. But as you're talking, I you're saying came out in that conversation I had with him Mhmm. Where he talked about, you know, he I guess he doesn't feel like he has agency. So when diabetes needs something from him, he he has that feeling of, like, I don't wanna comply with being told what to do by diabetes.
Scott BennerAnd then it puts him into a situation where he's now being told what to do, but it's so dire he actually has to do it now. And that when he looks back on it and realizes that his actions previously led to what's going on now, he feels bad about it. It's it's exactly what you're explaining here. So I can't wait to find out what the answer is because I told him to put his head down and keep going. So, and I'm and and that, you know, life's not fair.
Scott BennerYou know, you've gotta slowly build on experiences, make little changes that give you tiny bits of confidence. It'll grow after a while. I at one point, said to him, I was like, you know that thing they tell you if you fold a piece of paper in half and keep folding it in half, eventually, it reaches from the Earth to the moon. Do you know that mathematical thing?
Erika ForsythMaybe it's buried back there. Yeah.
Scott BennerYeah. Actually, explain folded paper to moon. I don't know it well enough to, like, explain it. I just know that there's this idea that if you take one sheet of paper, fold it in half, fold it in half again, and continue to do that, eventually, the distance that it would create is is pretty amazing. And I said, I think about that that way with, you know, effort and, you know, experiences.
Scott BennerLike, try a thing and, you know, continue to try and continue to try. You'd be surprised at how just like saving money, you know, you put a thousand dollars away and wake up in thirty years and it's six thousand dollars. Or, you know, like that's not a thing, you know, that you really expect the the folding over. Here it is. Hold on a second.
Scott BennerImagine you have a standard piece of paper that's 1.1 millimeters thick. Every time you fold the paper in half perfectly, its thickness doubles. So you fold it once, it's point two. Twice, it's point four. Three times, it's point eight.
Scott Benner10 folds makes 10 centimeters. 42 folds of that paper is 439,800 kilometers. Yeah. I just think
Erika ForsythI I can't even
Scott BennerI I right. You can't, but I think that's the point is that Mhmm. It's the same with effort, and it's the same with sticking up for yourself or trying to change your situation. Like, you're not gonna notice it when you do it. But if you just keep doing it, and eventually, there you go.
Scott Benner42 folds of a piece of paper. The moon is on average about 384,000 kilometers away from the earth, so it would take exactly 42 folds of a standard piece of paper to bridge the gap between the earth and the moon. And I think you could do that in your own life too, you know? So anyway, that's what I ended up telling him. Hopefully, it'll be helpful to him.
Scott BennerI also told him to get therapist because of, you know, because of the human parts of it here that, like, every time in the conversation, you could see how he felt got into his way or how he thought got into his way. Like, his mindset was a little skewed or he was coming at it from a wrong perspective to help himself. But, anyway, I I you know, please go on. I'm I'm I really do like this conversation.
Erika ForsythSo I think that just even that example of, you know, the, I'm not gonna I don't want diabetes to tell me what to do or diabetes, isn't gonna get in my way. I think there is that the wrestling of the autonomy. Mhmm. Right? Like, you you have now these external constraints that nobody wanted.
Erika ForsythRight? So you're wrestling with that sense of grief and loss. And then if diabetes isn't gonna get my way, we hear, like, well, that can be, you know, that can be a positive mindset around I'm gonna keep doing the things I wanna do in life. I'm gonna achieve my goals, my dreams, and I'm gonna ensure that I know how as best I can to manage as well as I can within range values, etcetera, to reach my dreams.
Scott BennerYeah.
Erika ForsythRight? Then conversely, I don't want diabetes is not gonna get in the way because no one's gonna tell me what to do in that wrestling with that autonomy piece. It is still getting in the way. Right? Because you Yeah.
Erika ForsythLike, it's still like, if you because I'm not gonna it's not gonna tell me what to do. I'm not gonna pre bolus. I'm gonna just do what I want in terms of what I eat and how I eat and when I do it. It's still diabetes is gonna get in the way.
Scott BennerAsk people all the time when they tell me, I told them diabetes isn't gonna stop us, or I don't let diabetes stop us. I said, you have to tell me what that means because it either means that you've taken control of it, and it's not stopping you because it's not having those impacts, or you've thrown it up in the air and said, I'm not letting diabetes stop me. I'm also not paying attention to it. So I'm just gonna keep going no matter what bad thing is happening to me. And I said, that's, you know, not a sustainable model because one day the health implications will come for you.
Scott BennerI I don't know. Like, when I was talking to this this guy, he's lovely. He wouldn't mind if we said his name even, but you guys will hear it in his episode. I said to him, and if you're not gonna do this, like, I because he knows what to do. Right?
Scott BennerAnd he's not doing it. And I said, and if you're not going to do it, then don't do it gleefully. But I said, don't live fifty miserable years. Live fifty awesome years and see a therapist and figure out why it is you don't wanna live eighty awesome years. I was like, but, like I mean, if you're going to I said, own your decision.
Scott BennerReally think about it. And if this is how you wanna live, then live this way. But don't beat yourself up about it while you're doing. Like, you're literally not moving. You're both not having success and you're not moving forward.
Scott BennerYou're sitting perfectly still bemoaning what's happening to you. I'm like, you're gonna do that. It's already been four years. It's gonna be soon it'll be ten. I I actually said to him, was like, if you wanna do heroin, do it.
Scott BennerLike like, just do it. Go shoot it up and nod off and enjoy yourself. I'm like, I don't think you should. But if that's what you're gonna do, why are you beating yourself up about it while you're doing it? Just go for it.
Scott BennerWhatever you're gonna do. I said, I hope you don't do it. Like I said, I hope you take good care of yourself. I was like, but right now, I'm just talking to a person who's just circling the same drain over and over and again. And they have the feeling that they're circling the drain, but they never go down the drain.
Scott BennerI'm like, you're just sitting there. It's it's sad. I mean, obviously, that's not what I want for people and I wouldn't you know, if you're asking me my advice, it's not do heroin and what the hell. Mhmm. If you're doing that already, like, I mean, it just seemed doubly sad to, like, like, to beat yourself up about it at the same time.
Scott BennerYou you know? Like, just listen.
Erika ForsythShame is a powerful
Scott BennerYeah. Yeah. And be my dad. Just smoke the cigarettes and die. He he wasn't gonna stop, so just go for it.
Scott BennerYou know? Like, life is too short to spend the whole time in a flux. Mhmm. You know?
Speaker 3I I
Scott Bennerdon't know. Like, there's something about that, you know, when you look up at some people who live a a live fast, die young lifestyle and they just have made a decision that that's what it's gonna be. Those are all the people in all the movies that were like, I wish I could do that. You don't wish you could have died younger. You wish you had that carefree attitude that they have.
Scott BennerThere's gotta be a way to have a carefree attitude and not do heroin is all I'm saying. This does not seem like a heavy lift. Okay?
Erika ForsythIs that that that's the answer.
Scott BennerThe answer is don't do heroin and have a carefree attitude. Goddamn it. Get out there and start working. Well, listen. In this last little bit of your notes, the answer to this problem must exist.
Erika ForsythOkay. Well, I don't I don't know if there's an answer. I think the the one other point I wanted to make around as we're talking about mindset
Speaker 3Mhmm.
Erika ForsythAnd and shame. Right? With with higher agency, the imperfect data brings less shame. And that that is a journey. Right?
Erika ForsythBut we hear often in the messaging that your your blood glucose value, your a one c, your time and range, those are just numbers. Don't let them define you. Don't let them reflect your worthiness or your value or your identity, and that is 100% true. But part of that, getting to that mindset that, okay, this this blood glucose value does not tell me that I'm a bad diabetic. It does not tell me that I'm a bad parent managing my child's diabetes.
Erika ForsythBut we so often equate that, right, to our how we're doing as as a person with diabetes or a caregiver.
Speaker 3Mhmm.
Erika ForsythSo but to shift to it's just a number. It's giving it's information. It doesn't need to be overwhelming. Part of that is a mindset shift and being intentional with how you assign value to the number, but it also is stemming from the higher levels of agency that you experienced over time. So right in the in the beginning, when you're learning the and you don't have high levels of agency, it makes sense that you also are experiencing high levels of shame and and and unworthiness and feeling out of control, and so you're experiencing high anxiety and high shame.
Erika ForsythSo with with the evolution and increase in levels of agency, it's like those levers. Right? Like, you're you're increasing with with the knowledge and experience and experiencing more predictable outcomes when you don't get that outcome that you have expected, this the shame around that number is is decreased because you realize, okay. I know that I oops. I forgot to do that, or I shouldn't have done this, or, you know, it was just one of those days.
Erika ForsythIt's okay. You know? So I think just highlighting too that it's not only about reducing the anxiety and increasing the agency, but also that shame narrative shifts as well.
Scott BennerI I it's another thing I said to him. I was like, look. You you know, because at the end, I was like, well, let's make some sort of a plan for you. He's like, let me get out a piece of paper. I was like, write down all the things you think you should do.
Scott BennerAnd after talking for an hour, goes, do the thing. And I was like, yeah. That's pretty much all of it, but let's break it down a little more. And and so we're breaking it down, and I said, then listen. Do two things for me.
Scott BennerDon't do that thing where it's like, if I missed a day, so I'm gonna restart on Monday. I was like, that's a human failing that we do. Like, I'm gonna start my diet on July January 2, or I'm gonna do, like, that stuff. I was like, that's bull. I was like, just if you mess it up on Tuesday, throw it into who cares?
Scott BennerAnd then just keep going, and don't wait till Wednesday. If you figure out at noon on Tuesday, didn't do something right, just go back to what you were doing. Like, it's a habit. Like, do the do the habit. Right?
Scott BennerBut don't feel bad about it. You're still doing way better than you were doing the week before, so be happy about that. Like, stop seeing things as as an error all the time. It's an experience you had. You had an experience.
Scott BennerBuild on it. Like, I have such a good idea. I'm I'm I've made a note off to myself. I don't wanna forget. But before you and I go, I wanna talk to you about it.
Scott BennerBut, like, anyway, I'm sorry. Like, let let's go let's keep going. I'm all over
Speaker 3the place.
Erika ForsythYou had a good idea.
Scott BennerI had a good idea finally.
Erika ForsythOkay. So lastly, when when agency becomes dysregulated, you there's this nonlinear dynamic that occurs. Right? So if you then are feeling and this is kind of an agency and anxiety are both at a high level because if agency becomes overinflated or rigid, like, must control the blood sugars. I must know that when I do this at a, then b will happen.
Erika ForsythAnd that hyperfixation, the hypervigilance around control Mhmm. I you know, paradoxically, anxiety will go up back again. And this we see you know, this again happens in at all stages of of of diagnosis, particularly in the beginning.
Scott BennerYeah. And it it it listen. And it shows why like, I lived with a woman who is, you know, you would have colloquially called her type a a couple of, you know, twenty years ago, but she's got anxiety. And it makes her incredibly good at what she does, but I watch her do this. Like, she thinks that the the mastery of something will make the anxiety go away.
Scott BennerI'm like, the anxiety is what's making you master it. I was like, you're you got this backwards. You you know, like, she's always telling me, like, when I get this done, it'll feel better. And I was like, you that is not gonna happen. And and in this, like, you know, in this small example, the being hypervigilant about the data, emotionally reactive, self criticism, shame, all of that stuff, that's what I see from people.
Scott BennerWhen they double down on, like, I'm gonna get this. You don't understand, Scott. I'm the one who fixes this stuff. I'm like, you're not. Just step back, chill out, have the experiences, let time pass, and one day, you'll just wake up and go, oh, I get it now.
Scott BennerAnd then that'll be it, and you will have saved all of that time in the middle flogging yourself. It's I can't fix this for everybody. Just chill out.
Erika ForsythYes. As as they yes. As we all listen and say, okay. Let's just we'll just do that.
Scott BennerJust chill out, I guess, Scott. No. But, like, but there but the answer really is in there for everybody. So you just have to you really do just have to mellow out a little bit, have experiences, and and, you know, and let time pass until you have the tools and the and the education, things start making better sense, and you can kinda give I I do it now. Like, I mean, you can go back and listen to this.
Scott BennerI would have been upset about a higher blood sugar about something. I'm not like that anymore either.
Erika ForsythAnd and maybe a diagnosis when she was two Oh my god. There was probably a higher level of anxiety. Than that.
Scott BennerYeah. But but thanks to the good friendship of of the people who've come on the podcast and shared their stories and you and Jenny and all the people who come on here and help me, I've worked my way through it now. I'm not the same person today as I was back then. Luckily, I don't have the kind of personality that beat myself up too much in the middle. I did still, but not as badly as I I see some people suffer with.
Scott BennerAnd I can tell you if I could go back in time and change something, it would be not to beat myself up as much as it's gonna get there, but not to the level of throw it up to God. It's all gonna be okay. Like, no. You have to pay attention to it. You just can't let it make you nuts while you're doing it.
Scott BennerAnd I know I know all that's easier said than done, but but, nevertheless, I'm sorry.
Erika ForsythI was trying to come up with another example of one of the few experiences, and this which makes our communities so unique, under we understand each other. When you work so hard at something and the outcome doesn't match your effort or even your knowledge
Scott BennerYeah.
Erika ForsythAll the time, that is crazy making.
Speaker 3Mhmm.
Erika ForsythRight? And so it's understandable that
Speaker 3It's the intertwining go to
Scott BennerYeah. It's the intertwining of all of it. It's the it's it's every so this is what should I say my thing now or or no? Yeah. I'll say my thing now, and then you can you can do then we'll we'll finish up here.
Erika ForsythOkay. Okay.
Looking Ahead: A Mental Health "Pro Tip" Series
Scott BennerIt has occurred to me that over the years of you and I talking, we've had these, like, thoughtful conversations about, like, you know, specific ideas, agency and anxiety and that kind of thing today, but also body grief and, you know, and all the other things that we've yeah. And resilience and all the other things that we've talked about over the years, like, it it occurs to me, like, we've got the pathway to, like, a it's almost like a mental health pro tip series for diabetes. And maybe it's a map you follow and you because everybody gets to the same thing. It happens to everybody. Like, everything that happens happens to everybody.
Scott BennerWouldn't it be nice to know that when you get to this part, it feels like this, and then this is kind of the mental health idea you have to understand to traverse this part. And then go to the next part, by the way, now this thing's gonna happen and you're gonna feel this way and this will happen. Oh, by the way, if you're having trouble with all that, have I told you about the five four three two one method? I think you and I are building like a real compendium of ideas. The problem is for usability, like, for people who listen through them, that's good.
Scott BennerBut because you're explaining it to me and I'm trying to absorb it, it gets very conversational and not as pointed as it could be. And I'm wondering if we couldn't create, like, a flowchart that goes through the standard things that happen to a person along a diabetes diagnosis and lifetime, and then show them where that branches off into ideas that might help them as they get to those different stations. That was my idea. You think that works?
Erika ForsythWell, I'll have to think about that one, Scott, because it feels very
Scott BennerIt's a big idea.
Erika ForsythI think it's a very complex
Scott BennerIt is complex. But
Erika Forsython a theme of mental health and yeah.
Scott BennerAnd you might tell me I'm wrong, but, like, what I've been hearing during this two part episode is that forgive me if I'm if I I'm just if I sound pompous for half a second, but the ideas that are in here are already covered in the pro tip series. They're just covered very colloquially. You you do know what mean? And they're all in there. I'm not saying you can do them.
Scott BennerI'm saying that that they exist inside of that. Now I didn't know about any of the things that you and I have talked about over the last handful of years. I never I don't think I was ex exposed to any of it except through life experiences. I didn't have words to put to it or, you know, a textbook to point to. As I was talking about how I took care of Arden's diabetes and how I how it ended up working out for me, I think I've had all of these experiences going through.
Scott BennerHas it led me to a perfect mental health situation? Of course, it hasn't. But we're in a good place, and it at least gives you the framework to see that, like, a sure something else might happen to you, and maybe it's not gonna happen exactly like this. But is value in knowing that part because just like in the pro tip series, the pro tip series doesn't tell you exactly how to take care of diabetes in every situation that may come up, but it gives you enough foundational ideas that as you bang your way through this and have different experiences, you can rely on those foundational ideas to get through the new struggle. Is the framework of the pro tip series, end all be all?
Scott BennerOf course, it's not. Some of it you might need differently. Some of it might not help anything, but it gets you through. And I don't know that you and I haven't done the same thing. I know you don't think about it the same way I do, which is good because that's why you have your job and I have mine.
Scott BennerBut I think that there's a foundation through all of our conversations that that would shepherd somebody pretty well through this life, and at least give you a shot at it. And, anyway, go ahead and think about that. That's it. There's there's your next big idea.
Erika ForsythThe larger themes of, you know, grief and validation and normalizing one's experience, and then what we're doing today, you know, and and have done in other episodes is giving you know, naming what's happening is so powerful. And is that gonna reduce this experience? Is it gonna reduce the pain? No. But I think having an understanding of what's actually occurring and why, even though it's gonna be people are going to hear it and receive it through their own filter and lens because of their own history.
Scott BennerYeah. But it gives you a better shot. It's it's like it's even like parenting. Like, you don't parent somebody and explain every ounce of everything that's ever gonna happen to them. Right?
Scott BennerYou give them big ideas and touchstones and things to say, like, these are rules we follow. These are rules we bend. This is important to us. This isn't as much so. So that when they run into a terrible situation or something that they don't know what to do, they at least have these little, I don't know, these foundational ideas that they have about how to live, and they apply it to that situation.
Scott BennerAnd generally speaking, it gets you through that. Like, I know you think about it as, like maybe I'm inferring something, but, I think you think of it more as, like, if we're gonna say something to somebody, it should be perfect for them. And I get that. And that would be a good reason to go to therapy and talk to somebody who is speaking to you directly. But when you're just talking out into the air for people, I mean, there are a lot of things that happen over and over again to people who either have type one or love somebody with type one, and then they hit that spot, I feel shame.
Scott BennerRight? Then they just feel shame forever because they don't have any tools or even words for the shame a lot of the times. So if you let them know when this happened, you are feeling ashamed. And over here on the side or ideas about that that you can go into further and try to understand, maybe they'll actually go over there and understand it, and then come back and go, oh, and then find a way to give away some of that shame and move forward a little bit. Because I I just feels like that's what we're talking about is that people are walking a path, they fall into a pothole, some of them they jump out of and some of them they crawl out of and some of them they get stuck in.
Scott BennerI'm saying let's throw a rope ladder down there and a flashlight and see if they can figure out how to get out, you know, and maybe some of them will hold the flashlight from the last pothole and mix the next one. In a world where our parents don't teach us this stuff, and I'm not saying be mad at your parents. Our parents didn't teach them anything either. Like, in a world where we don't pass this kind of stuff on to to each other, you're left to just figure it out as you're fighting your way through life. And I'm just telling you most people just get stuck.
Scott BennerBut, my my experience with the podcast is is that when you give people good tools, a lot of them traverse their thing better. And then they're not stuck as long and then go get stuck in the next thing, Erica. And maybe get to the end where they grow some marigolds and drop dead. That's what I'm that's my plan. Hold on.
Scott BennerI'm gonna put some marigolds in the ground. I'm gonna watch them, and then I'm gonna give up. But on the way, I don't wanna be stuck so long Mhmm. Everywhere. I think about that with the diabetes the same way.
Scott BennerLike, it's heartbreaking to see somebody stuck for five, ten, fifteen years, but because they didn't know their basal was too low and they're not putting their insulin in enough time before they eat. That's not enough to you not not knowing that shouldn't ruin fifteen years of your life. And then it exasperates all this other stuff that that we're talking about here. Everything feels worse because that that's why when I that's why when I think about diabetes, I just think if you know how to get your settings right, you know how to time the insulin. It's not a perfect system, but it alleviates so much that it might give you enough conscious time to think about other things.
Scott BennerAnd I think the mental health stuff gets ignored by people greatly in a regular lifetime. People who are going through this kind of stuff have even less time and mental energy to put on something like that. So anyway, I mean, you can just go listen to all of them. I think you'd be okay. But, like, I don't know if there's not a way to, like, reframe it.
Scott BennerSomething to do in 2027 is what I'm saying.
Erika ForsythI I think it's an interesting idea. I think the the concept of, you know, how does one person change is a larger
Scott BennerCharlie, there's no answer to that part.
Erika ForsythRight. Yeah. Right? Like, are is someone going to change based on them listening to the pro tip series or a mental health pro tip series, so to speak? Mhmm.
Erika ForsythHolding that larger question of what is one's motivation for change, and what do they need to get there? Could could a series be beneficial? Yes. Is but true how does true change actually occur?
Scott BennerWell, that's between them and Jesus. You know? This is just a podcast. They can go figure the rest of that other I just think it's nice to throw tools on the ground and see if people pick them up and use them. That's all.
Scott BennerAnd it's not like they're tools that they're gonna cut their hand off with. It's, you know, this is what shame feels like. This is what agency is. You know? There's nobody right now listening whose parents told them about agency.
Scott BennerOkay? That just didn't happen. So and if you did, then your parents were therapists, and you have a whole different group of problems then.
Erika ForsythYeah. I wonder when actually the term agency became more common.
Scott BennerYeah. I did it pop into
Erika Forsyththe into the zeitgeist? Verdacular. Yeah. Zeitgeist. Yeah.
Scott BennerNo idea. So Finish up. I'm sorry.
Erika ForsythYes. No. That I think those are all good
Scott BennerThank you.
Erika ForsythWonderings. And I think to the end, this this two part series, the goal, you know, ultimately ending with, you know, having that balance, right, to not feeling like you are trying to control a a partially controllable system, right, that leads to the heightened anxiety and working really hard to try and control something that isn't fully controlled. And, you know, we don't even I don't like using that word either.
Scott BennerYeah.
Erika ForsythYou know, doing the best you can to manage as best you can. So go goal having enough agency to act with confidence and know how and trust within yourself and your body, but also holding that place that that's what we were talking about earlier, like, enough acceptance, enough grace to tolerate the unpredictable. Or when when things don't go, you know, as as you anticipated, how do you bounce back from that, and how can you be kind to yourself in that space while still holding the agency? And so this whole process that we've been describing, this you know, the rebuilding of agency, which really coincides with with your grief, and experience that restores that felt economy. So going back to what we were saying at the beginning, you do have have a true lived experience of loss of autonomy when you have this diagnosis within your family system.
Erika ForsythBut as you increase the agency and the the compassion, you have a restored felt autonomy.
Scott BennerSo this is what it is. Right? And then I have to accept that I can't change. This is our reality. And then I go out there and I make try to make good decisions.
Scott BennerI try to get good tools. I try to learn from my experiences, try not to beat myself up too much, and maybe in after the passage of time, you might pop up and feel like, okay. Like, I I got through that part now. But it's it is very interesting to break it down into, like, into those pieces that are valuable to have when you don't understand why you feel the way you feel or why you're thinking what you're thinking, you know, because it it all feels out of control. So it's it's nice to put words to it.
Scott BennerIt really is.
Erika ForsythYes.
Scott BennerOkay. Well, all of you use your autonomy to create some agency. I know those are it's it seems so confusing to me still. But, you know, go get it. You can do it.
Scott BennerBut by the way, and if you can't ask ask, like, one of these large language models because this thing is in front of me about the folded paper, and it just said to me, would you like a visualization to make it clearer? And I said, yes. And it just built this thing with a slider on it. Now I'm watching paper fold in half and get it's amazing.
Erika ForsythI I might I might need to go do that.
Scott BennerI watched your face when I said it. You're like, I know that's not right. Yeah. Well, it's right. You just keep making one good decision and then you make another one.
Scott BennerAnd before you know it, you got you got way more than you thought you were going to. So thank you. I appreciate this very much.
Erika ForsythYou're welcome. Thank you, Scott.
Closing & Sponsors
Scott BennerThe conversation you just heard was sponsored by Touched by Type One. Check them out please at touchedbytype1.org on Instagram and Facebook. You're gonna love them. I love them. They're helping so many people at touchedbytype1.org.
Scott BennerAre you tired of getting a rash from your CGM adhesive? Give the Eversense three sixty five a try. Eversensecgm.com/juicebox. Beautiful silicone that they use. It changes every day.
Scott BennerIt keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better. The podcast you just enjoyed was sponsored by Tandem Diabetes Care. Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox.
Scott BennerThere are links in the show notes and links at juiceboxpodcast.com. Thank you so much for listening. I'll be back very soon with another episode of the juice box 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.
Scott BennerIf 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, oh, I'll probably send you a Christmas card. Would you like a Christmas card? If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes.
Scott BennerBut everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, Type one Diabetes on Facebook. My diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control.
Scott BennerI'm joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down complex concepts into simple, actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, or you can listen to it at juiceboxpodcast.com by going up into the menu. Have a podcast? Want it to sound fantastic? Wrong way recording.com.
#1875 Freak Out in Bay 3
Sam shares her son’s rare KCNJ11 neonatal diabetes diagnosis, her fight through the NICU, and her incredible personal journey of breaking generational trauma to build a beautiful life.
Key Takeaways
- Neonatal Diabetes & Genetics: Sam’s son Elliot was diagnosed with a rare KCNJ11 gene mutation (occurring in 1 in 600,000 babies), causing neonatal diabetes, which was initially managed with sliding-scale insulin.
- The Power of Advocacy: Sam’s traumatic hospital experience highlights the immense pressure parents face. From dealing with unauthorized $12,000 genetic labs to navigating threats from social services, her story underscores the crucial need to relentlessly advocate for your child.
- Understanding the KCNJ11 Mutation: This specific mutation prevents the kATP channel in the pancreas from closing, blocking the release of insulin. Because the body's natural glucose-sensing mechanism is broken, insulin is not secreted properly.
- Transitioning from Insulin to Glyburide: Because of the nature of the KCNJ11 mutation, Elliot was successfully transitioned off daily insulin injections at age two. He now takes a compounded oral sulfonylurea (glyburide) that pharmacologically forces the pancreatic channels to close, releasing insulin.
- Breaking Generational Curses: Sam shares her deeply moving personal journey of overcoming a traumatic, abusive childhood to provide a healthy, stable, and supportive co-parenting life for her son.
Resources Mentioned
- Dexcom G7: dexcom.com/juicebox
- Omnipod 5 Starter Kit: omnipod.com/juicebox
- Cozy Earth (Use code JUICEBOX for 20% off): cozyearth.com
- Juice Box Podcast - Bold Beginnings Series: juiceboxpodcast.com
- Juice Box Podcast Private Facebook Group: Search "Juice Box Podcast, Type 1 Diabetes" on Facebook
- Wrong Way Recording: wrongwayrecording.com
Introduction & Sponsors
Scott BennerHere we are back together again, friends, for another episode of the Juice Box podcast.
SamI am Sam. My government name is Ashley Silea. I am the mother of a neonatal diabetic with a KCNJ eleven gene mutation. He was diagnosed eight hours after he was born.
Scott BennerIf your loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five 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 Juice Box podcast.
The bold beginning series and all of the collections in the Juice Box podcast are available in your audio app and at juiceboxpodcast.com in the menu. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
The episode you're about to enjoy was brought to you by Dexcom, the Dexcom g seven, the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juicebox.
Today's episode is also sponsored by the Omnipod five. And at my link, omnipod.com/juicebox, you can get yourself a free, what I just say, a free Omnipod five starter kit. Free? Get out of here. Go click on that link.
Omnipod.com/juicebox. Check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox.
Links in the show notes. Links at juiceboxpodcast.com. The podcast is also sponsored today by Cozy Earth. You can use my offer code juice box at checkout to save 20% off of your entire order at cozyearth.com. Everything from the joggers that I'm actually wearing right now to the sheets I sleep on, the towels I use to dry myself with, and whatever else is available at cozyearth.com.
Just use the offer code JUICEBOX at checkout.
Meet Sam & The Birth Story
SamI am Sam. My government name is Ashley Silea. I am the mother of a neonatal diabetic with a k c j KCNJ eleven gene mutation. He was diagnosed eight hours after he was born.
Scott BennerWow. Am I calling you Sam?
SamYes.
Scott BennerOkay. Please. Plea please.
SamIt's just easier for everybody to call me Sam.
Scott BennerI have no trouble with that. I just wanted to make sure I didn't start calling you something else. Well, how how old are you?
SamI am oh, thirty thirty?
Scott BennerSam, why don't you know how old you are?
SamWell, when you turn after you turn 25, you just kinda forget.
Scott BennerOh, was that what you do? Yeah. I should try that. You're 30 years old. You have how many kids?
SamOne.
Scott BennerOne. And how old is the baby?
SamHe is now 10.
Scott Benner10. Okay. So take me back. Your pregnancy pretty was it, like, a common pregnancy? Did it seem like it was problematic?
How was that process?
SamSo it was actually really great up until it wasn't. About thirty two ish weeks along, we noticed some problems, such as, like, the placenta starting to de He just wasn't growing. He really didn't have the room to grow because I'm a very small person also. And then things just kinda escalated from there. In about thirty five weeks, my doctor had made a comment stating that he wanted me to deliver at the time we were located in Iowa, he wanted us to deliver in the University of Iowa.
Mhmm. He never really made it seem like anything was, like, drastic, So I was like, no. Like, it's okay. Like, I picked you. I want you for a reason.
I'm a very, so to speak, shy female. I don't want everybody up in there and everything, so I was dead set that he was going to do it. He never made me feel like things were gonna take a turn for the worse.
Scott BennerOkay.
SamHe was very calm about everything. And looking back now, I realized it was actually, like, more serious than he ever led me to believe. And I think it was more him just trying to keep me calm because it we were in, like, the in between. We it could go either direction.
Scott BennerI see. No reason to get you upset in that moment?
SamYes. Okay. And then about thirty five weeks, he was like, okay. I'm gonna give it a couple more days. If we don't see any progress, then we're gonna go ahead and induce you.
And sure enough, we started the induction process.
Scott BennerOh my. And then I'm sorry. You married at that time?
SamSo my spouse and I at that time, my son's father, we were never actually married, but we were common law married at the time.
Scott BennerYou you weren't by yourself in the hospital is what I'm getting at.
SamCorrect.
Scott BennerOkay. Good. Good. So the, induction, they give you the juice to get it going. Right?
Is that the whole thing? You Yeah. Making a make a plan, show up on a certain day. It wasn't rushed or emergent or anything like that.
SamNope. We show they said to hear midnight on Friday. I think it was, like, the August 27, and we're like, okay. So we got there. It was my mom and I because we had a new puppy at the time, so his dad stayed at home.
The next morning, he was up there and everything. So it's would actually been later on and they're on Friday, and they started some type of pills they gave me, and they started all their stuff. And they're like, okay. You're gonna be here for, like, thirty six hours, and some labors last up to seventy two, especially with it being your first one. And I'm like, oh my.
Okay.
Scott BennerAwesome. And then yeah.
SamI was like, this sounds like a great time. And then all of a sudden, I mean, several hours later, they wanted me up and walking as much as possible to try and speed up the process.
Scott BennerMhmm.
SamAnd all I wanted to do was take a bath. Yeah. And I was like, okay. It's time for my bath. Like, she said, I gets up I get up every hour for a half hour.
It it's time. And she's like, let's just go ahead and see how far along you're coming. She's like, when you hit a six, you cannot because if your water breaks, like, you cannot be in the bathtub without water. She's like, okay. But I promise you, I'm nowhere near six.
And she's like, oh, you're at seven, so you're not taking a bath, and we're calling the doctor.
Scott BennerIt's your last moment.
SamYeah. And I was so mad in that moment. I was like, I just want a hot bath, and I just wanna feel better. And so they called the, anesthesiologist up. He never made it.
Scott BennerMhmm.
SamThey called my doctor in, and they're like, you're gonna have to hurry up because she's in actual active labor. And he's like, there's no reason that she should be. And she's like they they're like, no. She absolutely is. He got there, and I I kid you not.
I pushed five times, and he was still in his farm clothes, and I had my son.
Scott BennerDid he have a corn cob in his pocket by any chance?
SamNo. But he didn't have mud on his boobs.
Scott BennerOh my gosh. That's I don't know if that's amazing or creepy. I can't tell.
SamYeah. He's like, I didn't even have time to go on my lab coat. So
A Frightening NICU Transfer
Scott Bennerbaby comes, is there initially any problems at all or anything, like, on that day to be concerned about?
SamOn that day, yes. But, like, the first couple hours, like, brand new mom. I was 20, yeah, 20 years old when I had my son.
Scott BennerWow.
SamAnd they, like, threw him on my not really threw him, but, like, put him on my chest. And I was like, what do I do? Like, I don't know what I'm supposed to do right now.
Scott BennerI'm still thinking that, in case you're in case you're wondering, Sam. I'm a I'm a I'm pretty far into this, and and every day, I think, I wonder what I'm supposed to do.
SamYeah. Like, they do not give you an instruction meeting. And I, like, looked around at the nurses, like, dumbfounded, like, what just happened? Because, again, everybody's told me seventy two hours and everything, and five pushes, and he's here. And I was like, uh-uh.
Yeah. Like, I was just dumbfounded. So in the first, like, couple hours, I had opted for him to stay in the room with me because I wanted to start, like, caring for him and getting used to, like, the mom things. And they came in about an hour later and said, we're gonna just gonna take him in on the nursery just for some observation and get him cleaned up and stuff. And I was like, okay.
Didn't think anything of it. Like, they were just calm and collected. They reassured me. Come to find out behind the scenes, they were continuously checking his glucose because it wasn't where a normal child at that age should be.
Oh.
SamAnd then about oh, I couldn't even tell you what time it it was. I wanna say early afternoon, his pediatrician comes in, and she's saying, okay. So, like, we're noticing and, of course, the doctors, you know, use the big words and stuff, and I just went through this traumatizing life experience. And I was like, can you just dumb this down for me? Like, I cannot understand what you're saying.
And she's like, so your son's glucose is higher than what we want it to be. We're gonna have to transport him. And my mom's like my mom and I were both like, oh, okay. So what floor are we moving to?
Scott BennerYeah.
SamJust thinking we're going to a different level. And she's like, no. He has to go to Iowa City. I was like, what?
Scott BennerAnd then
Samfrom where we were, it would
Scott BennerWhy there? Is it because they have clean shoes? Why did you have to go to Iowa City? Did they have like
Sama So the University of Iowa is a research hospital.
Scott BennerI see.
SamSo they have they were better equipped to to care for just about, honestly, anything I've never to best comparison I can think of with Iowa City is, like, going to Saint Louis.
Scott BennerOkay. And do you get to go with him, or do they keep you at that hospital?
SamSo in a normal situation, no. If I had been if I had been probably in a better condition than I was because my blood pressure tanked and everything else, they would not have discharged me. And in that moment, I actually found out that just because baby gets discharged to a different hospital doesn't mean that mom does. And I I'll be honest, I freaked out on everybody finding that out. And my doctor actually agreed as long as, like, I passed certain requirements, I was able to go.
And he's like, with the complication that she's having or the complications she started having after giving birth and stuff, Iowa City is actually going to be the best place for her too.
Scott BennerThat was because sounds like he made a decision to help you stay with the baby. Yes. Yeah. Let me pause for a second there. So we'll we'll put you guys in transport, and we'll hold on for a second.
In your family, any issues like this in the past? Do people have autoimmune issues? Are people sick in general? Like, what's the family health like?
SamSo I do not two years after he was born, my mom has an autoimmune disease called Graves' disease, but it has nothing to do with the pancreas. It deals with the thyroid. Yep. My, like, very distant ancestors have a history of type two diabetes, but nothing, like, nothing else. And my cousin's son was actually diagnosed a year and a half ago with type one diabetes.
Scott BennerYour cousin's son was. Okay.
SamAnd they're the same age.
Scott BennerOkay. Okay. So alright. So they get you to the hospital. Baby's blood sugar won't come down.
It shouldn't be lost on people. Like, 20 is young to be dealing with all this, you know. So Yes. It's a lot happening. You know, you don't have a background in this.
Does anybody in your family have, like, even a medical background to help walk you through it, or are you just sort of, you know, at the mercy of what people will tell you?
SamYeah. I was 100% even, like, honestly, still to this day, I'm still at the mercy to what people tell me because it doesn't matter how much knowledge you have about diabetes. I personally believe anything and everything can change in a split second. Mhmm. And you can't have all the knowledge.
There's always going to be something else that you I feel like I'm learning something else every single day.
Scott BennerYeah. And you're at it for ten years now. Yes. Yeah. What is this gene mutation?
And, you know, when do they figure it out? And then how's it presented to you? And then what what does that mean for his life, you know, in the beginning and now?
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The Reality of the NICU
SamThey transported us to Iowa City. We couldn't go in the room because they were putting an arterial line. We had no idea what this was. We were able to finally go in at 03:00 in the morning just to be told that he we cannot hold him until this arterial line comes out Mhmm. Because it's connected through his like, where his umbilical cord would have been, so his belly button, and connected to the major artery in his heart.
So that way, they could do blood draws without having to poke him because they were checking him at that time every hour.
Scott BennerOkay.
SamSo they didn't wanna constantly poke him if they didn't have to on top of giving him insulin shots because he was on insulin shots at that time.
Scott BennerAlrighty. Okay. Wow. How much insulin do you give a newborn?
SamSo he was on a sliding scale, and I still have all the records of them. He was getting anywhere from one to three units for the first nine and a half months nine and a half to 10 or I'm sorry. Nine and a half to a year of his life. Mhmm. It was it just depended on where his sugar was.
Scott BennerJeez. Did you breastfeed?
SamI did not breastfeed, but I did pump.
Scott BennerOkay.
SamBecause he was he had the arterial line in for so long that I Oh, you couldn't couldn't take him up.
Scott BennerI see.
SamAnd they did after about three days, I ended up having a breakdown and they they were able to get it to where I could put my arm, like, under his head and just kinda hold him inside the incubator like that.
Scott BennerYeah. How'd you make it three days? I'm only talking to you for fifteen minutes. This was ten years ago, and I'm about to have a breakdown. This is really upsetting.
Seriously. Yes. You know? Wow. Okay.
So they let you kinda nuzzle in with them a little bit there, but they're very worried about that that arterial line.
SamYes. Yeah. I was too. Because, like, you're telling me if I pull on this or if it gets snagged on anything, like, it's connected to his major arteries.
Scott BennerYeah. Yeah. No. Of course. And you're 20 again, I'm it's it's not gonna leave me that you're 20 years old while this is happening.
I don't I think I was at a movie theater when I was 20 years old. You you know what I mean? And you're you're in a hospital doing this. You're on a sliding scale. What do you do?
Do you let him eat first, then give him insulin? Are you like, how does that all work back then?
SamSo they would have us let me back up just one second here. He when he was born, he was born under four pounds as well.
Scott BennerOkay.
SamAnd he could not maintain his own body temperature, so he had to be in, like, a heated incubator on top of it.
Scott BennerMhmm.
SamWith him being so small, and they just kept saying, like, he's the healthiest baby in the NICU. He's the healthiest baby. And I'm thinking, how is this healthy? Like, he's got all these tubes connected to him, and they come in and said he wasn't eating enough. So they had to put this NG tube in.
Mind you, I'm a first time mom. I have no idea what a NG tube. I do not take any nursing classes at all whatsoever. And so I lost it over this NG tube because he's got all these other wires. And one of the nurses, after I completely lost it on everybody, came in and she said, just because sometimes as doctors and nurses, we forget that something so minor such as an NG tube, which is just a feeding tube, come to find out.
Mhmm. Something that's so minor to us is actually a big deal to the parents, and sometimes we don't take a moment to reflect on that and explain that this is a good thing to get the nutrients he needs and to see how we can better help him with his sugars.
Scott BennerYeah.
SamSo that is, like, a moment that stuck with me
Scott Bennerfor Scary. Right?
SamUp until this day.
Scott BennerYeah. Yeah. It's just a scary sight. He's so little. And what's that tube go in his nose?
Is that right?
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SamYes.
Scott BennerYeah. Oh, jeez.
SamAnd all they do is just pour the breast milk in through the tube and it goes in through snows and gets into his digestive tract, but I didn't know that. They just kept saying another tube, another tube.
Scott BennerMhmm. This boy you made this baby with, he's 20 as well?
SamSo he oh, gosh. How old? He's five years older than me. So he's currently 34 or 35.
Scott BennerOkay.
Sam35.
Scott BennerBut he was like 30 but he's 25 then, so he's still no help. I remember myself at 25. Yes. Yeah. Yeah.
I gotcha.
SamAnd he like, of course, I was on maternity leave. We still have bills to pay on top of it. So he I'm two hours away from him at this hospital with our newborn. He's back at work, like, two or three days after we have the baby Yeah. Just because we still have to have an income to be able to pay our bills and pay for insurance and everything else.
We started in the bay one, which is, like, critical unit, and then they moved us, like, to each bay. And there's up to three bays in just like the normal NICU. By the time we got to bay three was when they finally did the genetic lab to see what was causing the diabetes. Mhmm.
Advocating During the $12,000 Genetic Lab
SamWe found out that our insurance would not cover this lab, and it's a $12,000 lab just for one person. They wanted all three of us to get this done. Oh. So we tried to opt out of getting this lab done because who has $12,000 in their back pocket?
Scott BennerWell, it sounds like 36,000.
SamWell yeah.
Scott BennerYeah. Yeah. Yeah. Yeah. But it you're independently wealthy.
Right? Your 25 year old boyfriend was working as a rocket scientist, maybe? I I mean, how
SamYeah. Right?
Scott BennerWell, hey. What if we were to ask? Hey. You guys get $36 to do free tests? We don't.
No.
SamNo. No. Like, we we do not. And not knowing how long we're gonna be here for and I was gonna be off of work, we can't just spend money just because we want to spend money. Like, that was not an option.
Scott BennerYeah. What'd they end up doing for that then? I mean, because you have the diagnosis, so how'd it work out?
SamSo at this point in time, we did not yet find out that he had the k c n j eleven gene mutation. We just knew he had some type of diabetes.
Scott BennerOkay.
SamAnd they they did say, like, several times that they believed it was linked to genetics because they there was all out of all the other labs and tests that they ran, like, there was no explanation. And this was the only test that they hadn't run yet.
Scott BennerI see.
SamSo they they knew it was linked to genetics, but they couldn't pinpoint exactly how without this specific test.
Scott BennerOkay.
SamAnd we told them, like, we can't do this. We can't afford it. I'm like, that's just not an option for us. Well, we did some research and found out that if we paid for shipping in The UK, they would do the lab for free because they wanted to study this.
Scott BennerIt was like, $100
Sameach.
Scott BennerYeah. It's $36 or 45¢ for a stamp. Which would you prefer? Yeah. Thanks a lot.
SamRight? So we, like, explained to them, we would be more than happy to pay to have it shipped to The UK to have them study it, and, like, they would share the answers or whatever with the hospital. Mhmm. The hospital did not wanna go that route. And I and I understand it now.
At the time, I didn't, but contamination and everything and all the things. So I was like, I don't know how we're gonna pay for this. Like, we're just not going to do it. We'll just do do with what we got. We know the problem, and we can go from there.
We're just trying to dig die deeper at this rate.
Scott BennerOkay.
SamCouple hours later, he's back home two hours away, and me and baby are there. About two hours after we made this decision, a nurse comes in with a needle, and I kid you not. That needle was probably six and a half inches long. The needle was longer than the baby's arm. And I was like, what are we doing?
Like, I haven't seen an insulin shot like this before. What are we doing here?
Scott BennerYeah.
SamThat's when they explained they were doing the genetic lab behind our back.
Scott BennerAnd then gonna charge you for it later? So
SamI freaked out because that's what I thought. I freaked out again. Another freak out episode. Mhmm.
Scott BennerFreak out in Bay three. Freak out in Bay three. Yeah. Yeah. Yeah.
SamGot the direct the pedia I'm sorry. Pediatrician medical director in there. I got his entire endo team in there, and it's it was this one specific doctor that had ordered it. And to this day, I still will not speak to her. If she's the only on call, I will call and call and call until I get somebody else.
I will not talk to her. And I'm on the phone with my spouse, and he's yelling at her. I'm just a blubbering mess. I'm having a full on panic attack at this point because, finally, everything just got to me, and that was the tipping point. Come to find out, they made an agreement that the university would cover the cost but never expressed that to us.
Scott BennerYeah. Communication's not great. Also, like how the same, group of people who were not concerned about the muddy boots were concerned about contamination. That's interesting.
SamRight?
Scott BennerEvery everybody's got their head screwed on nice and straight. Yeah. Again, so how simple would it have been just to come to you and say, hey. Great news. You know?
The university's gonna take care of the testing. We're gonna test the baby now. You would have been like, oh, that's amazing. Thank you.
SamYes. Absolutely. And it really would have been just that simple, and I wouldn't have freaked out for, like, the hundredth time at this rate.
Scott BennerYeah. So okay. So but once you get that diagnosis, I mean, do you treat them any differently than you were prior to knowing?
SamYes. Okay. So we were in the hospital for several months, and this lab could take anywhere from six to twelve weeks to come back because it tests literally everything in its dog. So we're still in the hospital. We're still doing the insulin on the sliding scale as normal, making adjustments as needed with his body.
Finally, the day comes for I'm sorry. Let me back up here. Mhmm. After that freakout episode with the genetic lab, they thought I had postpartum depression, so they sent social services in. I looked at them, and I said, okay.
I'll tell you right now. I do not have postpartum depression. I know it's a very real thing, and I know a lot of people deny it. But let me tell you about my experience from the minute I had my son up until I got Really, let's backtrack up to my thirty five week gestation mark up until today because these are all the things that's happening. And you're telling me that you wouldn't have a minor freak out?
Scott BennerI don't love the word gaslighting because, well, I have my own reasons, but that feels like that's what that is. Right? Like, you know, you know, beat on your head for days and days and days, and then when you go stop it, they go, hey. Why are you so upset?
SamYeah. And I that that's literally what I told him. Like, you have to understand. I've been through all of these things, and I finally just combusted.
Scott BennerYeah. I would imagine.
SamI think it's justifiable.
Scott BennerListen. I I wanna be honest with you. Yesterday, I had to make three phone calls. Okay? One to insurance for my car, one to something we're purchasing, and one to another these three unrelated issues in my life.
Right? And not one person on the phone appeared to have any grasp of their job, what they were supposed to be doing, what was needed. You know, you'd ask a simple question, they'd say, I don't know. And I'm like, woah. Woah.
If you don't know, who who know you know what I mean? It would be like if you went to the grocery store and pointed at the cash register and said to the cash register person, what's that? And they said, I don't know. Like, it was on it was on that level. Okay?
So these three calls, they go exactly the same way. I walk downstairs and spend the better part of six minutes ranting at my wife. And I don't I don't even know what I was able yeah. I was just like, why is everyone I mean, am I just getting old? Like, what's happening?
How come it appears that no one fundamentally understands their job or cares or is motivated to look into it any deeper? When they when the answer was I don't know, I said, well, what are we gonna do about that? And one girl went, she went, I was like Oh, no. Yeah. Like, I guess we hang up the phone now and you'll have no resolution.
It's like like the vibe of it. I had not been through all the things you were through. I just had three phone calls that were frustrating and I had a freak out in Bay 3. I just want you to know, except my freak out was in the kitchen.
SamThat was awesome. I had a freak out in Bay 3.
Scott BennerYeah. Yeah. You said don't I wouldn't judge yourself too harshly. I was I
Samwas Right?
Scott BennerOh, I don't I'm know I was just like, oh, what is happening? I I was like, I started saying, have to move, and she goes to where? And I'm like, I don't know.
SamThat's awesome. I love that.
Scott BennerIt just it's been I I've been alive too long now. Do know what I mean? So I'm like, I'm a fairly competent person. I'm not in a great shakes, but I'm fairly competent. You put me in charge of something, I'll get it done for you.
If I don't know, I'll figure it out. I don't think I've ever looked at a person and thought and said to them, uh-uh. I guess we'll just all just give up and lay down. You you know, like, I what in the hell? Ugh.
Anyway, I would At
Samleast pretend like you're looking for the answers.
Scott BennerI just want you to know that if I was you, they would have arrested me in that hospital. Yeah.
SamIt was it was bad.
Scott BennerYeah. I think you did fine is what I'm getting at. But go ahead.
SamWell, I appreciate that.
Scott BennerYeah. Yeah.
SamMean, after that, like, they never sent in another social worker. They had many more breakouts, but they did not send anybody else in.
Scott BennerAnd and
SamI explained oh, yeah. I explained to the social worker too also, like, I am my child's voice. He doesn't have a voice. He can't even stay awake for more than five seconds at at this point in his life. Somebody's gotta speak up for him, and that will be me.
And you're telling me that he has this disease that he's going to have to have or this disability that he will have for the rest of his life. Somebody's going to have to be in his corner and that's me.
Scott BennerYeah. And not for nothing. I still look like I looked at my high school graduation photo. So there's a lock oh, if that social worker would have come into my room, Sam, they would have had to call a hostage negotiator after that. Okay.
I would have been like I would have been like, that's enough.
SamThat's enough. Yeah. We're done here.
Scott BennerShe can't come back out now. How's that sound? Someone send somebody in here with a goddamn brain in their head because I can't do this anymore with you people. Right? I'm sorry.
Go ahead. Oh, we gotta get past this part. No. You're good. After
Samthat, I think it was really, honestly, a couple of days later, I think they were just tired of me being in the NICU because they ended up moving us to the pediatric floor, and he was the smallest and youngest child on the pediatric floor. And many of the nurses kept saying, we've never dealt with a baby or a child this small or this little or this young.
Scott BennerMhmm.
SamAnd I was like, what are we doing here?
Scott BennerYeah.
SamBut then it was like, when we were on the NICU floor, they're like, we don't typically handle diabetes. Like, they were bringing pediatric nurses from the pediatric floor into the NICU to be able to care for him.
Scott BennerMhmm.
SamBut then when we went to the pediatric floor, they were like, we don't really know what we're doing here. And I was like, I just wanna go home. I thought it's right.
Scott BennerI got kicked out of the hotel I was in previously. I think I think this is where they put me. Yeah. Yeah. By the way, what what bay are we in, by the way?
Because
SamRight.
The Diagnosis: KCNJ11 Mutation
Scott BennerWell So so so okay. So now, I mean, you you get this back. Like, can I read this here? A k c n j one one mutation is a change in the k c n j one one gene, which gives instructions for making part of the k a t p channel in pancreatic beta cells. That channel helps the body decide when to release insulin.
If the gene is altered, the channel may not work normally, so insulin can be released too little or too much depending on the specific variant. Does that all sound right to you?
SamYes. Okay. Yes. That is actually correct.
Scott BennerAnd he gets not enough? His variant is not enough insulin. Is that right?
SamThat is correct. Okay. So we went home when they finally discharged us. We still went home on a sliding scale because this lab still hadn't been back by that point.
Scott BennerOh, okay.
SamWe had to drive up there. I believe it was, like, every other day. We had to drive up there. Every day, we had to talk to them to let them know his sugars, what he ate, and everything. We were doing checks every two hours.
By month two or three of us being out of the hospital
Scott BennerMhmm.
SamMind you, he's we were in there for quite some time, and we're approaching our first birthday. That was actually, no. I believe he was closer to 14 old, I think is what it was, is when we finally got the lab back, if I remember correctly.
Scott BennerYou should've tried Uber Eats. They're pretty quick. I mean Right? Am I right to say he could have had neonatal diabetes or congenital hyperinsulinism? Is that right?
Is it the two things that could have Correct. Right. And the insulin by the way, the other one, congenital hyperinsulinism, other cause beta cells to release too much insulin. I mean, that's I don't know. I'm I think I'd choose not enough before too much if you made me pick.
You know what I mean? Jesus. Yes. So what is this technically? Is it neonatal diabetes then?
SamThat is correct. When the lab came back because he was they just said, yes. Type one diabetes. Even though they knew it wasn't Mhmm. But until they could get those answers, they couldn't for insurance purposes, they couldn't just put whatever on there.
So they just gave him type one diabetes. And then when the lab came back, we both of us had to attend this meeting or this appointment, and they explained that he is a neonatal diabetic with a KCNJ eleven gene mutation, and that one in six hundred thousand babies are born with it.
Scott BennerOh, jeez. Awesome. Yeah.
SamAnd I got that one.
Scott BennerYeah. I got that kid. I made that kid all by myself. Yeah. Thank you.
Anybody out there listening who wants to give me too much credit, I just want you to know that I just, you know, typed explain k c n j one one mutation into a browser. And and I'm just very good at reading and sounding like I'm it's coming out of my head. In case in case you're all just like, oh my god. Scott knows so much about things. I I really don't.
I just I found myself saying it with so much confidence. I was like, I should be clear. Just threw that into chat GPT real quick. So and by the way, I only use chat GPT when I'm when I'm recording because the font is bigger. Anyway, that's neither here nor there.
So Jesus. Is there anything else that comes with this mutation, or is this thing with the insulin, is it is it the entirety of its impact, or are there other things?
SamSo with my son specifically, he really just has the one mutation, but there are other kiddos out there that I found on, like, mommy diabetic support groups where they have, like, additional things attached. And I knew you were gonna ask me this question. I meant to look up what the other one was, but, like, they have other mutations with it or they have additional, like, a disease that is a side effect or a symptom of the KCNJ eleven. K. He does not.
He strictly just has this. Now, obviously, we monitor for the other things when he goes for his appointments, but there's never been any flags that's been waived to lead us to dig deeper into seeing if he has those. Mhmm.
How Glyburide Replaces Insulin
Scott BennerThat's funny. You know, moving forward, I mean, I I I'd be remiss if I didn't ask you a little bit about raising a tiny little baby on insulin. Like, what was that like? You know, were there did you have a CGM? You know, if not, when did you get it? Have you gone to pumping? You know, how have you managed over the years?
SamCertainly. So when we first got home, he was still on his sliding scale because we didn't have all the answers that we have now. Every two hours, we would have to he never wanted to wake up. He's always, even to this day, been a really good sleeper. We would have to force him awake to do his feedings and to do his insulin shots.
We would give him his insulin beforehand, let him eat, and then wake him up two hours later. And that was just a a really vicious cycle, but we made it through. We got through it.
Scott BennerYeah.
SamDad and I, even though his dad's just the only one working, we he would even wake up with me even though he had to be up at work by 08:00 in the morning and everything else. He because he knew I needed a little bit of the extra support until I no longer needed that extra support
Scott BennerMhmm.
SamWhich was really great. And then about and mind you, we're still doing pokes by with a baby, you have to do them on their heel instead of their finger or at least my baby because his fingers were too small. So we were doing his heel. By the time he started walking, that's when we had to switch to the actual finger because they were worried about dirt getting inside of an open wound even with a Band Aid on there. And then about 17 or 18 old, we were finally approved for the Dexcom for an like, the FDA actually approved us because at this time, they were not approved for anybody under the age of two.
Scott BennerOkay.
SamSo we had to go through a lot of hoops to be able to get that. And with his condition being what it was, everybody wants to study it. Everybody wants to know all the ins and outs because he is actually the only the fourth patient ever in Iowa to be diagnosed with what he has, and he was diagnosed eight hours after he's born. So, nationally, he is the youngest child that's diagnosed with what he has. So everybody was, like, getting everything that they could task for us to be able to have all these tools such as, like, the Dexcom g six at that time and everything.
Scott BennerWow. That's a lot to go through. It it just genuinely is. How's he doing today?
SamSo today, he actually, by the time he turned two, we found out that we would be able to switch him to an oral medication called glyburide.
Scott BennerMhmm.
SamAnd he they the pharmacy and there's only one pharmacy beside the University of Iowa within a four mile or four hour radius of us that can make his medication the way that it needs to be made. He takes it by mouth twice a day, and he's been on that since he's been two. So no insulin. Well, let me take that back. He only gets insulin if he's above 300 for three hours or more or ketones are present.
Scott BennerOkay.
SamWe've given him insulin four times in the past two years.
Scott BennerOkay. I so I was reading about this earlier, but, mean, help me a little more with that. So it's a sulfonylurea pill. Is that right?
SamOriginally, yes. It comes in pill form, and then they compound it. The pharmacy compounds it into a liquid form for him.
Scott BennerI see. And the drug acts is this right? The drug acts on the same potassium channel pathway. Long term studies have shown this can be effective for many patients switch from insulin to the pill under special supervision. Do have any idea why that works for him and doesn't work?
It's something about unlocking I'm gonna need your help if you know. But, like, there's something right about this mutation that's, like, stopping the transfer of I'm out of my depth here all of sudden. Can you tell me more about how this all works?
SamSo the best way that it's been ever been explained to me is a type one diabetic, as most people know, not everybody, but most people know, is insulin dependent. A type two diabetic is is more manageable because they are not insulin dependent. It can be managed for the most part and for some people through diet. Then there in the middle is Elliot. That's my son's name.
I'm sorry. I never said his name. Elliot. He has what they consider even though he's a neonatal diabetic, he's treated as if he's a type two diabetic, and the glyburide is not insulin. It just gives the pancreas a little bit of a boost to keep morphing.
Scott BennerOkay. I mean, is that generally does he still does he wear a CGM?
SamYep. He wears the Dexcom Okay. G seven.
Scott BennerOkay. What happens if he doesn't take the pill? Like, what if you forget the pill one time?
SamSo perfect example I mean, we've never forgotten his medicine, but a perfect example, yes no. I'm sorry. Easter, so Sunday. Mhmm. So he gets it twice a day.
He gets a dose in the morning, and then he gets a dose at night. He got his dose his evening dose, and usually it's about 05:00 when we give it to him. He gets it about 05:00, and then he can eat a half hour after he has it. So we did five o'clock. He was eating by 05:30, 06:00 approximately.
07:00, his sugar was 350.
Scott BennerMhmm.
SamHe's going through a growth spurt right now, so we we've had to increase his medicine and haven't found the right dosage yet for it to keep up. So at that time, we had to give him insulin because his glyburide wasn't keeping up with what he had eaten for supper and everything, and his pancreas just wasn't kicking in. And we go through spurts where, like, sometimes his pancreas will work really well, and our max is 11 without any type of medication needed. And then there's been days where we've been hospitalized because it's just not working at all. Insulin's not working, and glyburide's not working.
Scott BennerI see. Is this expected to shift throughout his life?
SamSo when he was first born, they told us there was a seventy five percent chance that he would outgrow it. By the time he turned two, it turned into a fifty percent chance. By the time he turned four, it turned into a twenty five percent chance. And now we've just kinda given up on asking because if it was gonna happen, we kinda feel like it would've, and we've gotten over the hard part now.
Scott BennerOkay.
SamAnd they did say there's a chance of it, like, him outgrowing it, but then coming back later in life, especially as a teenager.
Scott BennerWow. I don't normally like to do this, but I'm gonna read this because I think it's super interesting. So functionally, glyburide works because it bypasses the broken glucose sensing step and directly pushes the beta cell toward insulin release. In KCNJ one one disease, the problem is usually that the kATP channel stays too open, so the beta cell membrane stays too quiet and does not depolarize normally when glucose rises. That means calcium does not enter well and insulin granules are not released.
In plain language, normally glucose enters the beta cell ATP rises and the kATP channel closes. Closing that channel causes membrane depolarization. Depolarization opens voltage gate calcium channels. Calcium flows in and triggers insulin secretion. With an activating KCNJ eleven mutation, that channel does not close properly when ATP rises.
So even if glucose is present, the cell behaves like it is still at rest and insulin release is blunted. The glyburide binds to the s u r one part of the same k t p channel complex and forces the channel more towards the closed state. So instead of relying on the defective ATP signal to close the channel, the drug chooses it pharmacologically. Drug closes it pharmacologically. Once the channel closes, the cell can depolarize, calcium can enter, and the insulin can be released again.
That is the core reason about how it works. That is really fascinating and interesting and so strange. That one little mutation stopped that odd thing from working. Like, that little tiny thing that happens for people you don't even think twice about. How about that?
SamAnd especially for it happening to it's just somebody so small and so new to the world Yeah.
Scott BennerAs well. Yeah.
SamLike, their body hasn't had any wear and tear
Scott Bennerat all. Yeah. No. Right. Just it's just that it's that mutation.
And it's the one in what'd you say? Six hundred thousand?
SamYes.
Scott BennerGosh.
Overcoming Trauma & Breaking Generational Curses
Scott BennerOkay. Well, well, that I mean, so I guess you count yourself lucky there. Right? Yes. I mean, how do you do you seem reasonably upbeat.
How do you like, were you always this way, is it a is this an attitude you've grown into over time?
SamSo this is my favorite question. I love when people ask it. My sister and I had a really, really, really crappy childhood. It's like, think of the worst thing ever and then times that by, like, 50. I am just adapted to environments.
I mean, we've lived in 60 some houses that I can remember, 10 schools. No. Seven schools, 10 states, child abuse, the whole nine yards. We went through it all, and I just decided I wanted to be a better person in life than what I was given and handed.
Scott BennerOkay.
SamAnd I wanted my child to have a better life. And the entire time in the NICU, they kept saying, like, I'm surprised you haven't broken, like, more or, like, completely lost it because my minor combustions were just minor. Mhmm. And I explained to them, and I will explain this to anybody to this day. It's not about me.
I have to be strong for my child, and he's looking up to me all hours of the day. And I wanna be the best role model I can be for him because I didn't have that.
Scott BennerYeah. I mean, I don't have all the details about you growing up, but I can tell you I didn't grow up well. And I often have a feeling of, like, this is not even the worst thing that's happened to me, like, you know, this year. Or, you know, you should have been around when I was 15. Like, that was that was that was tough.
You you know? So Yes. Yeah. I mean, I get your point. You have a lot of perspective.
Right?
SamYes. Yeah. And I just I want him to just to learn okay. He sees mom being a good person. He sees dad being a good person, doing kind things, doing good things, good deeds.
I want him to learn from that.
Scott BennerYeah. So this is why you use a different name than the one you were given? Because you don't wanna have attachment to your upbringing. Is that right?
SamNo. I use a different name than the one I was given because I used to be a bartender, and I am a part time nine one one dispatcher. And I got tired of people saying it incorrectly, and most of my 911 calls would be, oh, how did you get your names?
Scott BennerLike, hey, lady. You're upside down in the car right now. Why don't you focus on that? Okay? What an interesting name.
Shut up. Yes. So you're like, just call me Sam.
SamYeah. Pretty much.
Scott BennerI'm gonna ask a couple more questions that you can feel free to say no to. Because I feel like we understand the gene mutation thing and that whole process. I'm good, and we have a little more time left. So how much of your upbringing would you be comfortable talking about?
SamI'm an open book.
Scott BennerI mean, so how many you're one of how many kids?
SamSo my mom has three girls. My dad has oh, let me think here.
Scott BennerAre you under the second hand?
SamYeah. Yeah. He has, like, 10 kids, but some of them, like, aren't his, but he helped raise them so he considers them his.
Scott BennerIs he an incredibly handsome man?
SamI mean, I guess.
Scott BennerIs he well is he wealthy? No. No. Had he
SamWell, he makes money. Don't get me wrong.
Scott BennerBut, I mean, that's he has 10 kids spread out over how many people?
SamThree.
Scott BennerThree people, 10 kids, and he was abusive to you?
SamSo he was not, but his second wife
Scott BennerWait.
SamWas very abusive.
Scott BennerSo did you live with him when he was married to her?
SamSo my dad, yes, dad. My my parents, my entire childhood went back and forth on who had custody of us. Up until about fifth grade, my dad my mom had custody of my sister and I, and my dad actually kidnapped us and moved us to a southern state.
Scott BennerSam, why didn't you lead with that an hour ago? We would have never even talked about your kid's diabetes. Oh my god. Wait. You were wait.
So what's alright. So anytime I just wanna say this is a generalization, but anytime the kids end up with a dad for any reason, I'm always baffled. So what's up with your mom? Because you're talking to her now, but what was wrong with her back then?
SamSo my mom had her first child. So my oldest sister, she had her when she was 15. So she was a a mom at a very young age. Her dad ended up getting custody of her because my sister is of a different race, and that was a very big thing during the nineties when we were born.
Scott BennerYour mom's father has custody of your sister.
SamNo. No. No. No. I'm sorry.
My oldest sister's father had custody of her.
Scott BennerI see. Okay. Your oldest sister's so she's oh, This is okay. So your sister is you're connected to your sister through your mother, but you two have different fathers?
SamCorrect. And
Scott Bennerhe got custody of her due to her race? Yes. She wasn't being treated well in Whiteyville where you live? Is that what you're trying to say? No.
No? No. What happened? Okay. No.
Okay.
SamI I'm trying not to offend anybody.
Scott BennerOh, good luck. Maybe maybe you should stop talking then. Okay. Right.
SamHe had several, like, political parties that backed to their side of the family and ended up getting custody of her saying that a white mother couldn't raise a child of another race
Scott BennerOkay.
SamBecause that just wasn't a thing then.
Scott BennerAnd can I be honest? It doesn't sound like your mom couldn't raise you because she was white. It sounds like but does sound like she couldn't raise you. I just don't know why. There were problems for sure.
Okay. So that's all crazy. Yes. Alright. So
SamAnd and, like, her age definitely played a part into it, and there there was a lot of other factors, but that was, like, their defense that they stood on
Scott Bennerwas I
Samthe the difference.
Scott BennerBut when your dad comes and and kidnaps you, he takes her too?
SamNo. No. No.
Scott BennerNo. Oh.
SamHer dad her dad had custody of her by the time she was four.
Scott BennerUh-huh.
SamWe were just back and forth between my mom and my dad up until I was in fifth grade, and that's when he took custody or he had kidnapped us. The reason my mom ended up not really losing custody, but she went through and she had lost her job. She ended up getting evicted from her home, and she didn't want us to be essentially homeless. So my my that first time, my mom had given my dad a scroll so that way we had a roof over our head because she had nowhere to go with us.
Scott BennerI see. Okay.
SamShe was living in her car for some time.
Scott BennerYour mom's living in her car for a long time. Your dad now has you and he's got custody of you. He gets remarried. That lady starts abusing you?
SamCorrect. My sister got it the worst because she is a stunning image of my mother, burns with a curl iron and everything. My mom obviously gets DCFS involved, has all this documentation, and essentially ends up going to court, and she ends up getting custody of us back.
Scott BennerOkay. Were you ever abused?
SamBecause when she had given us to our dad, she had signed over not really, like, signed over all her rights, but stated, like, she was not fit to be able to provide for it at this time and is giving temporary guardianship to my dad.
Scott BennerGotcha. So then the abuse gets, allows her to get you back. Were you abused as well?
SamI was, but not to the extent that my sister was.
Scott BennerOh, okay. She burned her with a curling iron and things like that?
SamCigarettes. There was a few instances where she was pushed down some stairs.
Scott BennerDrugs involved at all?
SamYes.
Scott BennerYeah. I mean, it sounds
Samlike Heavily.
Scott BennerYeah. Okay. Your dad didn't step in?
SamMy sister in 2017 had a huge psychotic break and ended up going to the psych ward, and he she had to to be able to be released, she had to because it's court ordered, she had to attend, like, therapy and family therapy. Mhmm. He has stated in, like, his therapy sessions because they're, I mean, they're no longer married. Yeah. That he had no idea that it was ongoing and, like, he, you know, he was really messed up.
He's now twenty some years sober.
Scott BennerOh, good for him.
SamAnd he is, like, trying trying to rekindle the relationships.
Scott BennerWhat kind of drugs are we talking about?
SamThink of the hardest thing you can think of and all the other things combined.
Scott BennerSo we're looking about meth, heroin, stuff like that?
SamAge, I do not know about, but the others, yes.
Scott BennerYeah. My gosh. Well
SamI believe a few times, fentanyl was involved as well.
Scott BennerOh, yeah. Yeah. Sure. Let me just get right to the source. And and nothing was any of the abuse sexual?
No. Okay. Gosh. No. No.
No. I mean, I can you imagine the situation you're in where where you're like, oh, well, there's good news. Yeah. Jesus. Wow.
Well and did any of that have anything to do with you your relationship? Like, when you I mean, five years older when you're 20. Like, so you were dating an older guy when you were younger. Why? Because you were looking for, you think, like, stability, like, better decision making than you were than you had access to?
SamI mean, we worked together. We were friends for a little while before we actually started dating, and I was just attracted to him. And, actually, if I'm being honest and he actually knows this. My friend and I were playing making bets on to see who they could who could get with him before the other. And then it turned into a ten year relationship.
Scott BennerGonna say, do do you see this as you having won that game or losing it?
SamRight? But yeah. By the time my dad had kidnapped us, you know, fifth grade, it took my mom two years and two to four years and a $140,000 for her to be able to fight the sports to get us because Illinois would not cross over into state lines. And mind you, we were in Mississippi, and that's several state lines.
Scott BennerCan I just make a public service announcement? You you don't need kids. You you know what I mean? Like, do it look into yourself for a second and say to yourself, am I the kind of person who's gonna burn somebody with a hair curler? Am I, the kind of guy who might, you know, do meth on a Wednesday afternoon?
Maybe I don't need a baby. You know what I'm saying? Like, please. Yeah. All of you.
Just please. It's okay. Yeah. Making this podcast has been one of the best and worst experiences of my life. I have to tell you, like, there's there's times when you hear stories like that and you just think, that is not part of my reality.
And it's hard to believe it's real, but you talk about it with, like, such, like like, it just feels so normal for you. Do you know what I mean? Like, when you're talking about it. If you wrote that story down and had me tell it, I'd be sarcastic and ridiculous, and I'd be like, can you believe this? How does this happen?
Blah blah blah. And you're like, no. No. That was Tuesday. That that would happen all the time.
Okay. You know what I mean? I it's very I'm so sorry for you. But but at the same time, and the reason I kinda wanted to bring it up and what I'm gonna close here with is, did you you do therapy to get through this? Was it just a conscious decision you made?
I mean, how is it you're not drunk or high right now? Like, what what do you attribute all your success to?
SamSo I actually did not have, like, a huge psychotic break. My sister's was in 2017. Mine was in 2014, actually, but right before I met my son's father. Mhmm. My boyfriend died on a motorcycle accident, and I started drinking heavily.
Because growing up, I mean, we had seen all this stuff, so we both said, like, we'll never do drugs. We'll never drink. 2014, my boyfriend dies. It's my senior year. I'm graduating or had just graduated.
So then I started drinking heavily, and then I actually decided, like, I don't wanna do this anymore. Like, I'm better than this.
Scott BennerMhmm.
SamAnd I don't want to go down the same path as my parents did and everything. So I just started doing better. And then after my son's father and I had separated, I I didn't know how to be a single mom because, I mean, I I've been with this guy since I was 18, and then all of a sudden, I'm got this date or not really dating, but this toddler. I'm on my own. I'm starting from the ground up.
So I did seek out therapy after we separated. I believe it's been 2022
Scott BennerGood for you.
Sam'21, '22.
Scott BennerYeah. Good for you.
SamAnd they gave me some healing or some helping tools, and now I'm here.
Scott BennerYeah. Good for you. That's really awesome, Sam. Congratulations. That's a very adult decisions you made.
And you think you made them for you, or did you make them for your son or a little of both?
SamI would say the personal growth would 100% be for both of us, but mostly, it is so he has a better life than I had.
Scott BennerSam, you broke a circle. I You must be very proud of yourself. Alright. We gotta get her to move some more wait. Sam, hold on.
Sam, so you're we get we do have to get you better Internet though. I said you must be very proud of yourself.
SamYes. I am.
Scott BennerGood for you. That's awesome. Wow.
SamI'm all about breaking all the generational curses that I can.
Scott BennerYeah. No fentanyl for you.
SamNo. And, like, people say it's weird that my son's father and I have this great co parenting relationship where we have Christmas together. Sometimes we go on vacations together. Why is it weird? Is it because society tells us it's weird?
Because if he doesn't go with or I don't go with, then we're missing out on the excitement with our child. We're missing out on an experience with a child, making core memories with our child. Yeah. Why does society say it's weird?
Scott BennerWell, listen. On top of that, I'm I'm gonna do a little guessing here. You'll stop me if I'm wrong. Right? But it doesn't he probably didn't grow up great either.
Is that right?
SamCorrect.
Scott BennerYeah. So you're two people who came from bad circumstances who both decided that's not gonna be who we are. You guys probably just got together too early. If you made me break down your relationship, it sounds to me like you were, you know, two people who found each other and probably supported each other getting through all of this crap that people put on you when you were younger. And then you get to a certain point where you realize, had we not been thrown together like this, we probably wouldn't know each other, and this probably wouldn't be a relationship that we had.
And so then you very healthily separated, but kept yourselves together when your son's involved. And, I mean, honestly, this might be the healthiest healthiest thing I've ever heard in in my life. That really does make a lot of sense to me. Am I getting that about right, do you think?
SamA 100%.
Scott BennerYeah. I I mean, I've been doing this for a while. You you know? So this is the part where someone leaves a review later that says, he's so full of himself. I yeah.
I just heard he she tried to tell her story, but he made it about him. It's a conversation. I'm just bringing stuff up. I saw your review. Go to hell.
Okay? But I think it's possible my sarcasm doesn't translate to everybody, Sam. Do you know what I'm saying?
SamOh,
Scott Benneryeah. Yeah. Yeah. Neither here nor there. That that really is, that's really well adjusted decision making on both of your parts.
Like, do you think if you guys would have met when you were 30 and you had normal lives, do you think you would be together, or do you think you wouldn't have enough in common to be together?
SamYou probably wouldn't have really enough in common
Scott BennerYeah.
SamHonestly.
Scott BennerYeah. You're like two people who were stuck in a bank robbery together and you hung out for a year after that until the trauma was gone and then you went your separate ways. Yeah. Yeah.
SamYeah. That's kinda nice. I would agree with that.
Scott BennerYeah. Now, Sam, here's the last question. Are you dating? Are you looking for a person? Are you happy single with a 10 year old?
What what what is your play?
SamSo I after we split up, I was adamant about, like, working on myself, just being me and my son. I had just started at nine one one dispatch. I became really good friends with one of the officers, actually several of the officers, and him and I were just friends for several months. And we are going on to year three of dating.
Scott BennerGoddamn, Sam. You are a success story. This is it. Well, I appreciate that. From fentanyl to happiness, the Sam story.
Yes. Sam's not her real name. We put that in parentheses at the end. It'd be awesome. Oh, I'm so happy you did this.
What made you come on the podcast?
SamA lot of people kept saying, like, when I would comment or post in there about his genetic mutation because it's so rare. A lot of people just kept saying, like, they wanna hear our story.
Scott BennerYeah. Oh, I'm glad they said that, and I'm glad I was smart enough to listen. Look at me giving myself credit for answering your email. Well,
Samit is definitely appreciated. I love sharing our story and educating people because I mean, a lot of people know type one diabetes or know about it. A lot of people know type two or know about it, but then there's that neonatal that nobody's ever heard of.
Scott BennerYeah. And that if you if people ask you, you you would say my son has neonatal diabetes. Is that how you would answer? Or do you talk about the gene do you talk about the gene mutation, or is that over people's heads usually?
SamI do include it because I wanna educate, and I wanna educate properly as much as I can. And I just try to explain them, like, he's a neonatal diabetic with a KCNJ eleven gene mutation. It came from him or it came from his dad and me or his dad or just me, and one in six hundred thousand babies have it, and that's all the answers that I really have. But I'd be more than happy to look into it further and provide you with more in more answers if you have any questions.
Scott BennerSam, I am gonna do my square best to keep this podcast going for ten more years so I can interview you again when you're 40. I would love this. I feel like
Sambe there.
Scott BennerYeah. I feel like you're gonna really be a a person who looks back and doesn't recognize who they were twenty years before. I'm I'm super excited.
SamEven to this day, I don't even, like, recognize who I was when I would when I got kidnapped or, you know, like, even before then.
Scott BennerYeah. Seriously. Good for you. I'd clap if I didn't think it was reductive. I mean, I'm seriously happy for you with the decisions you made and and all the things you've been able to accomplish.
Really, sincerely.
SamWell, I absolutely appreciate that.
Scott BennerYeah. Congratulations. That's wonderful. Okay. Alright, Sam.
Thank you so much. I I really appreciate this. Hold on one second. Okay?
Closing & Outro Sponsors
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Hey. Thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box Podcast.
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#1874 Medical Gaslighting and Mitochondrial Diabetes
Sandy spent years misdiagnosed with Type 2 diabetes and battling medical gaslighting. Discover how the RADIANT study and AI uncovered her true diagnosis: Maternally Inherited Diabetes and Deafness.
Key Takeaways
- Mitochondrial Disease Can Mimic Type 1 Diabetes: Conditions like Maternally Inherited Diabetes and Deafness (MIDD) impair the pancreas's energy machinery, stopping insulin production. It is highly rare and frequently misdiagnosed as Type 1 or Type 2 diabetes.
- Metformin Risks with Mitochondrial Issues: Taking Metformin when you have mitochondrial disease can lead to life-threatening lactic acidosis. Sandy's misdiagnosis almost cost her life due to this exact contraindication.
- Advocate for Your Own Health: Medical gaslighting is real, and doctors may lack the time or specialized knowledge to crack complex cases. Don't be afraid to research your symptoms, ask for second opinions, and bring your findings to appointments.
- Leverage AI for Research: Tools like ChatGPT can connect disparate symptoms (e.g., short stature, hearing loss, and diabetes) that a standard 15-minute doctor visit might miss, helping you find rare clinical possibilities to discuss with specialists.
- The RADIANT Study: For individuals with rare and atypical forms of diabetes that don't fit the classic Type 1 or Type 2 molds, the Rare and Atypical Diabetes Network (RADIANT) offers specialized testing and whole-genome sequencing to uncover the root cause.
Resources Mentioned
- Eversense 365: eversensecgm.com/juicebox
- Tandem Mobi System: tandemdiabetes.com/juicebox
- US Med: usmed.com/juicebox or call (888) 721-1514
- Wrong Way Recording: wrongwayrecording.com
- Juice Box Podcast Facebook Group: Juice Box Podcast, Type 1 Diabetes
- RADIANT Study (Rare and Atypical Diabetes Network): atypicaldiabetesnetwork.org
Introduction & Sponsors
Scott BennerWelcome back, friends, to another episode of the Juice Box podcast.
SandyMy name is Sandy. I'm 51 years old, and my diabetes is complicated.
Scott BennerI created the diabetes variable series because I know that in type one diabetes management, the little things aren't that little, and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise, and those other variables that impact your day more than you might think. Jenny Smith and I are gonna get straight to the point with practical advice that you can trust. So check out the diabetes variable series in your podcast player or at juiceboxpodcast.com.
If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group, Juice Box Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.
Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
I'm having an on body vibe alert. This episode of the Juice Box podcast is sponsored by Eversense three sixty five, the only one year wear CGM. That's one insertion and one CGM a year. One CGM, one year. Not every ten or fourteen days. Ever since cgm.com/juicebox.
The podcast is also sponsored today by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.
Today's episode is also sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514. You can get your diabetes testing supplies the same way we do from US Med.
A Complicated Misdiagnosis
SandyMy name is Sandy. I'm 51 years old, and my diabetes is complicated.
Scott BennerReally, Sandy. How long have you had diabetes?
SandyI was diagnosed with diabetes November 2020.
Scott BennerOkay. So we're coming up on your sixth year. Is that right?
SandyYeah. Yeah. Or past yeah.
Scott BennerYeah. Beginning. And kind of diabetes did they, give you?
SandySo I was diagnosed with type two diabetes even though I presented as type one. I started losing weight. I was extremely thirsty, and I was losing my eyesight. And I finally decided to go get blood work, kind of in the back of my mind knowing possibly what was going on.
Scott BennerMhmm.
SandyAnd I go get blood work, and I'm at work. And I get the results through Quest Diagnostics, and my a one c was over 13, and my glucose was over 300.
Scott BennerOkay.
SandyAnd I knew right then and there, I was in trouble, but I didn't I haven't seen the doctor yet.
Scott BennerHold on a second. Is there other autoimmune in your family at all?
SandyYes. So I have Hashimoto's, and my son has Crohn's. And my son was diagnosed with Crohn's six months before I was diagnosed with diabetes.
Scott BennerOkay. How old is he now?
SandyHe's 20.
Scott BennerDo you have other kids?
SandyTurned 20. And I have a daughter who's 22. She doesn't have any autoimmune issues that we know of right now. Hopefully not.
Scott BennerOh, alright. So you I mean, give me a little bit of how you were feeling leading up to getting this blood work and and your testing.
SandyI was feeling really bad. I wasn't feeling good, and I couldn't quite put my finger on it. But, you know, any problems I've ever had, I've always blamed my thyroid. Oh, it's my thyroid because I've never been able to get it under control. And I would say, oh, it's my thyroid. Oh, it's this. But I knew that something more serious was going on with my symptoms, so I decided to go ahead and get everything checked out. And then I got the results back, and it blew me away.
Thyroid Struggles & Medical Gaslighting
Scott BennerOkay. Well, what did you mean that you can't get your thyroid under control? For how long have you had hypothyroidism?
SandyI was diagnosed in my early twenties, because I was super skinny. And I went for a regular exam, and the doctor told me that my thyroid looked a little enlarged, but it could be because I was underweight. But she wanted me to get it checked out, and I had blood work done, and it came back, with antibodies for thyroid for Hashimoto's. Yeah. And I went and got an ultrasound, and I had goiters on my thyroid, So I was put on medication.
And for years, my thyroid was pretty under control. But lately, I think since I've been diagnosed with diabetes, I can't get it under control because I will swing between hyper and hypo every six to eight months.
Scott BennerOh, what is the doctor telling you about the the constant swing? Do do they look them
Sandyfor nothing? I can't get an answer. We just constantly adjust my medication. I just started a new medication called Unithroid. So I've been on that about six weeks, so I'm hoping that will hopefully calm things down. But I've tried all sorts of medications over the years, and sometimes something will work temporarily, and then it won't work. So I don't I don't know. I think it's connected to my diabetes or actually why I have diabetes, which I guess we'll get into, but I don't have that answer yet.
Scott BennerWhy did they change the medic what was the thinking behind the medication change?
SandyAbsorption, additives that are in medication sometimes. I'm told sometimes certain people can't absorb medications because of the additives if your body's having a problem with those additives.
Scott BennerOkay. They didn't give you tyrosine? They gave you what?
SandyI was on tyrosine. So but that's that's for t three.
Scott BennerNo. Tyrosine's t four.
SandyThat's right. Tirosyn's t four. I'm thinking of Cytoml. Cytoml. You're correct.
Scott BennerT three.
SandyOkay. I was on Tirosyn for a while, and that worked for a while. And I've been on that twice. So it worked, didn't work because I went on it because, what, there's only four ingredients in it?
Scott BennerYeah. Tirosyn's pretty clean, honestly. Yeah. Yeah.
SandyAnd so I went on Tirosine a lot for a while, then went off of Tirosine. I've been on Tirosine. I've been on Levoxyl. Nothing seems to quite do it. But I'm hoping this new medication, Unithroid, I've never heard of it. Crossing my fingers that it works.
Scott BennerI hope so too. I'd I'd I'd never heard of it either. I talk to people about thyroid stuff a lot. And Yeah. Yeah. Nobody's brought that up yet. My kids everybody in my, my wife uses my wife uses Synthroid. She can't use the generic. If you give my wife the generic Synthroid, she she crashes pretty hard.
SandySee, that's what's been happening to me.
Scott BennerYeah. And Arden uses Tyrosine and Cytomil?
SandyI've done that.
Scott BennerCole does Tyrosine and, oh god, the the pig one. Why can't I think of it?
SandyOh, well, there's nature thyroid armor.
Scott BennerArmor. He does armor.
SandySee, I'd tried that, and I had a really bad reaction to it.
Scott BennerYour heart race?
SandyHeart race, sweating, dizzy, nausea. Yeah. Tried it twice and yeah.
Scott BennerYeah. He takes a very small amount. If he takes too much, it messes him up too. Yeah. His heart will start racing and stuff. My wife can't take the t three. It makes her heart race.
SandyI've only been on the t three temporarily off and on, but not recently. Only when my t three like, if I'm not converting to t three.
Scott BennerSo who's managing this for you? Do you have an endo managing this, or is your GP doing it?
SandyMy I have an endo. Yes.
Scott BennerAnd they're managing the thyroid?
SandyYes.
Scott BennerOkay. Well, let's hope that what they're doing for you now, balances things out a little bit. Because you're swinging hyper to hypo? Like, you're all over the place?
SandyI'm all over the place. I will go, like, really low. Like, I recently was hyper where I was having tachycardia.
Scott BennerYeah.
SandyAnd I've been up to hypo where my TSH is, like, over 16.
Scott BennerHave they wondered if you have Graves'?
SandyYou know, I haven't been tested for Graves', and I've researched Graves'. And I know that you can have Graves' and Hashimoto's, but I tend to go more towards Hashimoto's. But that would be another thing for me to look into once I get other things settled, so it's possible.
Scott BennerWell, before we move on, I will tell you that our overlords think that because you've had thyroid issues for thirty years, you should be looking into whether your dose is too high or too low, if it's an absorption issue, if you have Graves, or if something called toxic nodules might exist.
SandyOh, let me write that down. Toxic nodules.
Scott BennerYou want me to click on it?
SandyKnow about that.
Scott BennerI'll make clicky on it and see what it says. Okay. Oh, let's see. Hashimoto's thyroiditis, also known as chronic lymphocytic thyroiditis or autoimmune thyroiditis, is an autoimmune disorder that means you're developing antibodies. How many know all that? What's about the toxic nodules? Get the detoxing nodules. Alright. I'm just gonna go back to this.
Why am I even bothering with the Internet? Why don't I just ask our computer overlords and stop stop with this nonsense of, let's see. Pulling up the cleanest explanation of let's see what we can find out. Toxic nodule is a thyroid lump that starts making thyroid hormone on its own without listening to the normal control signals from the pituitary gland, which is TSH. I don't know.
It can feel like racing heart palpitations, anxiety, shakiness, heat intolerance, weight loss, trouble sleeping, more frequent bowel movements.
SandyWhen I'm closer to hyperthyroidism. I mean, I can mention it to my to my doctor next time I'm in and see. Yeah. I guess I'd have to get an ultrasound done.
Scott BennerI mean, don't tell her you asked you started thinking about it while you're recording a podcast because she'll probably, like, have you committed. But anyway
SandyShe knows I research a lot of things because I have complicated things going on. So I'm always going in with, hey. We need to talk about this, and I read about this. So no. No. No.
Scott BennerNo. Listen. I'm gonna tell you right now. My wife was on the cusp of needing we thought she needed an iron infusion. The doctor thought so too, but the labs didn't bear weight for the, for insurance. So my wife's been struggling, and, you know, she's trying to get the doctor to, like, you know, do it again. Doctor's like, well, we just did it. We can't really do it again. My wife did, like, five took she her blood work, threw it in a chat GPT, had it put together a one page describer for the for the doctor, threw it into the into the the notes for the doctor and said, hey. Look.
Here's the blood work I loaded in. Here's the answer I got back. And then she got an appointment on Monday.
SandyOkay. I gotta Yeah. Gotta look into this stuff. Yeah.
Scott BennerYeah. You listen. Sandy, the truth is, people don't wanna think. If you think for them, often, they're happy about it. So just as long as you're right, you know, if you're if you're not, then it's gonna be more of an issue.
Scott BennerSo okay. So you go in, you get an initial type two diagnosis?
SandySo the medical professional that I was with when I got that I got my blood work back, it was a nurse practitioner who I really liked. But I think this was just too like, not in her wheelhouse. She just kept telling me to be gluten free and sugar free.
Scott BennerThat should
Sandydo put me on metformin and Glacobride, I think it was. Okay. And and the regular metformin, not the time you eat. So I was constantly sick, and I was only on it for a few weeks, and the glycobride was having me I was having, like, a lot of lows, like, really bad lows. Okay.
So I got in with an endocrinologist, and she's looking at me, and she's like, you're not a type two. You are a type one. And I was like, that does make more sense. I didn't present as a type two. You know, I have Hashimoto's.
So she goes ahead and does all my blood work, and I did not have any markers for type one. She goes, well, you are type two. And that hit me really hard because it didn't make sense to me because I don't know how to put this without sounding judgy or rude, so I apologize to anybody, but I didn't feel that I fit the type two profile.
Scott BennerYour frame, your body say you weren't carrying extra weight. You you don't think you were eating in a certain way Correct. That kind of stuff. And that's what made you think I don't think that's right. But how why does the doctor start off by going, hey. You're definitely not type two. You're type one. Then the antibody thing throws them completely off?
SandyThat's I mean, just because I didn't have the antibodies. They're just saying, oh, well, you're automatically type two. So I decided to be a good patient. I listened. I took all the medication.
She put me on, extended release metformin, put me on Genovia. I met with a diabetes educator who really didn't know how to talk with me. So I'm vegan. I've been vegan for thirty years. Mhmm.
I'm not this health nut vegan. So just disclaimer, I do eat Oreos and, you know, things that are not healthy, but I do try to eat as healthy as possible.
Scott BennerTell me where your veganism comes from. You have trouble eating animals? What what is it? Yeah.
SandyYes. So when I in the nineties, I was in a zookeeping program where I live. I wanted to be a zookeeper, I wanted to help animals. And it just didn't make sense if I wanted to help animals, and I was also herding them. So for me, that's where it stems
Scott Bennerfrom. And you kept going that direction. Yes. Did you ever become a zookeeper?
SandyYes. I was a zookeeper for quite a long time. Was my first career.
Scott BennerWell, no kidding. That's awesome. I was just with a friend of mine this weekend, started his life off as a zookeeper.
SandyYeah. Yeah. It's a it's a great career, but I changed things. So yeah. So I met with a diabetes educator, and we were talking about all the food. And, of course, everything I eat was not on the list. You know, tofu was not on the list. Nuts and seeds were kind of on the list, but she's telling me, well, you can't eat this and you can't eat that. And I was like, but I know I can eat these things. Like, I know like, it's okay for me to eat these things even though you're telling me I can't.
So I was like, look. I'm gonna do my own research, and I will figure this out. So I cleaned up how I ate really well because I was like, look. If I'm type two, I'm gonna act like a type two, and I'm gonna do everything in my body, everything that I can do to make sure that I reverse this.
Scott BennerYeah. You you were committed to if this is the if this is what's going on, I'm gonna take a hard swing at it and see what I can make
SandyAnd it didn't work. Okay. It didn't work. So it was working for a while, and my blood sugar would go up, and it would kinda come down. And my doctor's like, well, yeah, you're gonna spike high, but as long as it comes down, you're fine. We upped the dose of my metformin, you know, and that's all she kept telling me. My a one c I I don't remember what my a one c was. I mean, it definitely came down, but it wasn't what I wanted it to be or what I thought would be good.
Scott BennerYeah.
SandySo it just kept going back and forth and back and forth. So I was on metformin for a few years, and I was doing everything that I should do, listening to my doctor, doing all my research, and I just started not feeling good. I started getting high blood pressure, and I kept going to my doctor. And I said, look. I'm not feeling good.
I can't put my finger on it, though, but just something isn't right. And she ignored me, wouldn't listen to me. And my blood pressure kept going up, and she's like, well, you're almost 15. You have diabetes. What do you expect?
And I'm like, but I haven't had diabetes that long. It is somewhat under control. I'm eating really well. It doesn't make sense.
Scott BennerAre you in a part of the country where everybody's got diabetes? So she just thought, like, well, this is what happens to these people. Is that it?
SandyI don't know. I don't know, to be honest. Okay. I've met a few, but I don't I don't have an answer for that.
Scott BennerBut that answer from the doctor is very kind of like almost feels like she's been beaten into submission kind of thing.
Sponsors
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SandyIt's possible.
Scott BennerYeah.
Lactic Acidosis & The ER
SandyI mean, I don't think she knew what to say or do.
Scott BennerRight.
SandySo I went along with that, and I just wasn't feeling good. One night, I had really bad tachycardia tachycardia. My husband took me to the ER. Everything came back normal except my TSH was really high, and they're like, oh, it must be your thyroid. So we go adjust my thyroid medication, and I'm still not doing well. So this was in April 2023.
Scott BennerMhmm.
SandySo I'm not feeling good. I decide to go to a cardiologist that summer. I go to a cardiologist. He does all these tests. I wear a heart monitor.
Everything comes back negative. My blood pressure is, like, scary high, and my husband's in the doctor's office with me. And he's like, you have white coat syndrome and high anxiety. I wanted to jump out of the chair at that moment, but I didn't. And I walked out, and I started crying because, again, nobody was listening to me, which I've had happened in the past in my life.
Scott BennerYeah.
SandySo we left trying to figure it out. I was put on metoprolol, which was working for my tachycardia, my high blood pressure, and it was working. And, again, I'm trying to be a good patient, trying to do what I'm supposed to do. December comes around, winter break starts, and I'm home alone, and I'm eating cereal for dinner. See?
Hot, the healthiest vegan. And I an hour or so later, I start having really bad stomach pains. And my family comes home, and I'm not feeling good. And I'm crying, and I'm on the bed just screaming because my stomach's really hurting. And my husband's like, we need to go to the hospital. And I did not wanna go because I knew if I went, I was just gonna be told again, this is nothing. There's nothing wrong with you.
Scott BennerYeah.
SandyHe's like, I'm gonna give you an hour, and in an hour, if you're still like this, we're going. So where we live, we have a stand alone ER down the street from us. So I finally gave in, and he took me. The nurse and my husband thought it was a gallbladder issue. I mean, I had all the symptoms they said.
I was like, fine. Let's take it out. Let's do whatever needs to be done.
Scott BennerYou're like, listen. Whatever. Alright? Yeah. Yeah. Let's start throwing I'm in the trash and see what happens.
SandyI was like, willing. Whatever. Just do it. I didn't care at that point. So they come back and tell me that I had a small bowel obstruction.
Scott BennerOkay.
SandySo I had to be taken by ambulance to the, as I call, the bigger hospital down the street, which was, like, a few miles down. So I'm admitted to the hospital for four days. They do medieval torture to me. Everything fixes itself. They couldn't figure out why I had a small bowel obstruction, and I was sent home.
Scott BennerWhat what was the torture? Did they put you in the stocks? What did they do?
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SandyI had a tube down my nose into my stomach. And it was horrible. Okay. I don't wish that upon my worst enemy. It was it was really bad.
Scott BennerOkay.
SandyAnd I was not on metformin or any of my medications in the hospital. My husband said that they were giving me insulin. I don't remember everything, but I do remember them pricking my finger. And I was checking my CGM as they were pricking my finger, you know, to compare and this and that just for fun. And we left the hospital, and I get home and, you know, I'm afraid to eat.
I start taking my medication. Things are going okay for a few days. It was winter break. Also, I'm a teacher, so I was on winter break. So I was taking that time to rest and get better.
Scott BennerMhmm.
SandyAnd like I said, I start taking the metformin and Genovia, and I start getting sick again. I can't keep anything down. I can't keep anything in. I'm just I'm feeling really bad. I called the hospital.
I need to see a gastro. They would not let me see anybody. I could not get in to see anybody. Every day, was crying. I could barely get to work when school was back in session. I wasn't working every day or half days, and every day, would call, And they're like, we can't get you in. We didn't have a referral when you were admitted, so we can't get you in. Finally, I get a call from some guy who said, hey. This was, like, almost mid January. He goes, I can get you in beginning of February to see a gastro doctor.
I was like, great. Let me take it. So I just kept saying to myself, if I can make it to February, I'm gonna be fine. They'll figure out what's going on. Martin Luther King weekend comes.
I'm still not doing good. I wake my husband up in the morning, and I said, look. I need you to take me back to the ER. I need fluids and Zofran. I can't keep anything down. I'm very dehydrated.
Scott BennerYeah. Things are getting backwards. Like, it it's it's getting worse.
SandyIt's getting worse.
Scott BennerYeah.
SandyIt's getting worse. So and, of course, I'm taking my medication like I'm supposed to be taking my medication. Okay? So he takes me back to the ER. We spend all day in the ER.
They are throwing every single test at me. It comes back normal. CT scans, ultrasounds, blood tests. The only thing that came back positive or a problem was my lactic acid. It kept rising and rising and rising.
And they were giving me bags of fluids constantly that I had a toilet commode next to my bed because I was constantly peeing. I had, like, four or five bags of fluid over a few hours because, like, this is what we need to give you to bring your arctic acid down. Right. And they couldn't figure out what was going on. It kept going up, and I was told that the number went up to close to seven.
Scott BennerOkay.
SandyAnd my husband heard the doctors in the hallway, you know, very concerned, and they come in and tell us that they're gonna have to transfer me back to the big hospital again, if we can't get this under control. And all day, my dad and my husband are on trying to figure out what's going on with me, putting everything into the deep, dark web. And they come up with lactic acidosis from metformin. So my husband tells the doctor, and he goes, oh my gosh. You're on metformin?
And we're like, yeah. It's, like, right there in my chart. He go and my husband's like, she has lactic acidosis. So I took the metformin in the morning, but I didn't take it in the evening. And because it was extended release, it started wearing off, and they took my lactic acid again, and it went down close to normal.
And he's like, that's what was going on. So go home. Don't take your medicine. Get in touch with your doctor. So I had lactic acidosis induced by metformin.
So I go home, and I get in touch with my endocrinologist. And I go into my endocrinologist, and I tell my endocrinologist what's going on. And she's like, okay. Well, here's a whole long list of medications you can't go on, and insulin is gonna be it. It's gonna be your safest thing.
I was like, let's do it. Let's let's do insulin. No problem.
Scott BennerYeah. How long has this been going on for at this point? Months?
SandySo the lactic acidosis was December 2023.
Scott BennerOkay.
SandyAnd so I saw my endocrin no. The lactic sorry. Back up. The lactic acidosis was January 2023. And so by February, I was put on insulin.
Scott BennerFrom the first time you started not feeling well till this point is how long?
SandyI couldn't tell you because it, like, just slowly crept up.
Scott BennerOkay.
SandyAnd, I blame things on my thyroid.
Scott BennerYou don't know how long you were blaming the wrong thing?
SandyCorrect.
Scott BennerAnd when you said at one point, you were in the hospital. You're not sure what they did. Were you on pain meds? Is that why you don't know? Yes. Yeah.
SandyYeah. I was on yeah. I don't even know what they gave me, but they gave me something nice.
Scott BennerI was gonna say, how'd you enjoy that? Was it good?
SandyIt was nice. I don't know. My husband knows everything that was going on. I mean, he was my rock. He was so good through it, and I don't I know I was in the hospital for four days.
I remember pieces of it. Yeah. But
Scott Benneryeah. I'm confused though of why through this whole process. If at some point a doctor said, hey. You definitely have type one diabetes, and said, no. You don't.
And then you did all this other stuff. Did you ever bring up did you know there used to be, like, a time where someone thought I had type one? Could there have been confusion there? Like or does that, like, get out of your mind because somebody's already
Sandysaid no? It kinda sat there. Like, I still was mowing it over because it it still didn't make sense. I was trying to be this great diabetic and a good patient, but it still it did not sit well with me at all.
Scott BennerYeah. Because, Sandy, I have to I'm not gonna call you out. I'm just wanna I wanna point out. I I just wanna point out. You said you didn't think you had type two diabetes.
No. But you're, like, head down doing what they're telling you to do, not feeling like you never, like, raised your hand and said, hey. Maybe I don't have type two diabetes. Should we look at that again?
SandySo throughout my life, I've had health problems that, you know, would kinda run into gray. Nothing was ever black or white, and so I was gaslit a lot for my life. Okay. And so I was afraid that that was gonna happen. So I was like, if I I'm either gonna prove to myself that I'm a type two or I'm gonna prove to them that I'm a type one.
Scott BennerOr die. I'll see what I can do. Yeah. Die. That'll show them.
Damn it. Then they'll all know they were wrong.
SandyExactly. So that's I mean, I had to prove to somebody myself or my doctor or somebody in the medical community, somebody that somebody was wrong.
Scott BennerTalk a little more first. Take a take a left turn here for a second and talk a little more about what that's like over a a lifetime to go know something's wrong with you, try to explain it to people, and nobody listens.
SandyIt's horrible. It's a horrible feeling. I mean, I have piles of tests and blood work before we had all this technology of things, and I would be told it's in your head. You have anxiety. You're making it up.
We kinda see something like this number may not be right, but it's just right on the cusp, so you're okay. Mhmm. Like, I I've always had digestive problems, and I thought I had celiac disease. I thought I had Crohn's. I don't have either.
When my son got diagnosed with Crohn's, my husband's like, you have Crohn's. You're gonna go get a colonoscopy again, which I've had one before. He's like, you're gonna get it. Ronan, my son, has Crohn's, so you have Crohn's. So I go.
I get scoped out. I'm clean. No celiac. No Crohn's. No nothing.
Nothing. So I don't know what's going on. You know, why do I have stomach problems my whole life? I'm told again, it's anxiety, maybe something I'm eating. I was gluten free for ten years.
It didn't work.
Scott BennerAnybody ever tried to tell you you were depressed?
SandyOh, yeah.
Scott BennerYeah. Were you?
SandyYeah. I don't think I'm a depressed person, but dealing with health problems, you know Gets
Scott Benneryou down everywhere.
SandyGet down in the dumps
Scott Bennersometimes Yeah.
SandyYeah. Especially when people aren't listening to you. It's very frustrating.
Scott BennerOf course. Tell me about anxiety all your life? Or
SandyYes. I I have anxiety. I've had anxiety all my life, and I know my thyroid plays a good portion of that sometimes if it's not regulated. Yep. You you know, that also
Scott BennerNo. For sure.
SandyDoesn't help. So Yeah. Yeah.
Scott BennerTough. And and the way they treat thyroid too is like, oh, we gave her the pill. That's over now.
SandyYeah.
Scott BennerYeah. They don't think about it ever again after that.
SandyYeah. It's just take a pill. Don't worry about what you're eating. Don't worry about your lifestyle, your sleep, or anything like that, your stress. Take the pill.
You're gonna be fine.
Scott BennerYou makes you wonder, doesn't it? That Yeah. How can that because that thyroid, it controls a lot. And It does. Right.
Right. And and I know that, and I make a podcast. You know that, and you were a zookeeper. Why is it my doctor doesn't know that? Or why is it they don't treat it more seriously?
SandyI just don't think they have time. I I'm I'm assuming.
Scott BennerI'm gonna say something, Sandy. May I it's been stuck in my head for a couple of weeks now. I think I'm about done hearing that doctors can't help me because they don't have time. I know. I think maybe that's just become a really acceptable excuse that we use.
SandyIt's a scapegoat.
Scott BennerYeah. Oh Yeah. They'd help me, but they don't have time. Bullshit. I've sat with doctors that have plenty of time, and they don't come up with anything either.
SandyI know. I know.
Scott BennerYeah. How about I don't know would be a nice answer? Well You know what I mean?
SandyThat's what I would like sometimes. I don't want a doctor to play like they know everything. Yeah. Just tell me that you don't know and I'm okay with that. Let's move on from there.
Find somebody else or figure it out, but you don't have to know everything.
Scott BennerYeah. I'm starting I'm starting a movement right now. No one
SandyI will be head of that movement with you.
Scott BennerNo one gets to say, oh, it's not their fault. They don't have time.
SandyRight.
Scott BennerRight. It's just it's just silly. I took my car to get fixed and my brakes were bad. And I crashed into a wall thirty minutes after I left, and they found out the brakes weren't fixed completely right. And we went back to the mechanic.
Guys said, look, guys. It's really busy. I have time to do it. Yeah. Would we go, oh, well, you didn't have time?
It's just such a strange thing to say. Like, it almost feels like it feels like this cascading situation where
SandyWell, that where I'm living, that's what we're dealing with. The health care system where I'm living is falling apart really fast.
Scott BennerI don't even I don't even care if it's a system. Once you're in the room with somebody that has taken the Hippocratic Oath, I don't actually give a shit about the health care system anymore. You're in there with somebody who told me that they're educated and ready to help. I don't know. I just saw I just had to change doctors because my doctor let me just say this.
You may many of you may have heard her on episode four thirteen. It's, she explains, thyroid issues, actually. And she's an endocrinologist, functional medicine doctor. I use her. My daughter uses her.
All my whole family goes to her. She amazing. Her husband gets a job with the French government, and they're moving to Paris. And I said to her, please, you've been with him your whole life. It's probably enough.
Why don't you get divorced? Stay here. Be my doctor. Right? Right.
But no. No. No. She wants to go to Paris and live there. So now she's leaving, and I gotta get another doctor.
Okay. Fair enough. She's got a life. I I I got past that. Then I went out to find another doctor.
She helped me locate somebody. I get in there. You know, I gotta meet the meet the guy, and he was fine. But, like, inside of five minutes, I thought, he's not saying anything. He's not asking anything insightful.
He's waiting for me to tell him what I think I need. Like and then I and then I finally, like, I let him do his thing, and then ten minutes into it, when I started getting irritated, like, not irritated externally, but irritated like this is he isn't special like she was. And I went and I said, listen. Here's the deal. And I just laid out my health in front of him.
I said, here's what I'm gonna need help with. This is what I'm taking right now. Most important thing in the world is I keep getting this GLP medication. After that, I need my iron tested every six months. I might end up asking you to sometimes tell my hematologist that I need an iron infusion.
Maybe, maybe not. They've been less you know, blah blah blah blah blah. Here's the vitamins I take. I how do I get ahold of you? And, boy, when I took over, he sat back.
He was all comfortable and happy as could be.
SandyDoctors don't want you to do that anymore.
Scott BennerYeah. Guess what? He was looking for a way out. But if I don't speak up, then he lays out this vanilla plan in front of me. Yeah.
It's about going to get blood. Oh, we'll go send you for blood work. I said, I just had blood work. Go look at that blood work. Oh, okay.
Did you? That yeah. If if I wouldn't have said anything, I'd have been off getting blood work.
SandyYeah.
Scott BennerI'm like, I don't need blood work. There's blood work right there. Pull it up. Oh, sometimes Quest won't let me oh, here it is. Oh, okay.
Awesome. Like, the whole thing feels like that.
SandyYes.
Scott BennerI just Yes. You know what I mean? Like, there's not someone with the courage or their convictions and a little bit of smarts behind it to, like, push. Now I've also been to great doctors. I'm not saying every doctor's a problem.
But when you get to one, a guy sat with me for a half an hour. And if I wouldn't have spoke, he would not have been valuable to me.
SandyI found a cardiologist like that.
Scott BennerYeah. And if I if I get sick later, do we say, oh, it's it's not his fault. He didn't have time. He had plenty of time. What he didn't have was thoughts.
Yeah. That's what I'm gonna tell you right now. I'm done. I want the I'm I'm I'm ready for the computers to take over. Let's go.
SandyWe talk about that. Yeah.
Scott BennerI'm I'm ready.
SandyLet's go back and forth.
Scott BennerI'm ready. Let's just put, like, an AI model in charge, and let's see what happens. Could it be worse? Yeah. Peep yeah.
Could couldn't be worse, could it? What are they gonna do? Blow up the planet? Oops. See?
We're already on that.
SandyRight?
Scott BennerCome on. Acting like, please. I'm done. I want something that can be Yeah. Dispassionately think about me and come up with the best possible answer.
Put me in a direction. Let me give it a shot. Like, that's all. I'm done with people. That's it.
I'm moving. I'm gonna go I'm I'm gonna go in the mountains. What do think of that? Get the hell out of here. Alright.
I'm sorry, Sandy. I just know you got the runaround, and I hear in your voice, you're an adult. You're in your fifties, and you start talking about your life with your health, and, you know, you sound like a little girl when it happens, when you start talking about it. Like, you're hurt and scared. Do you know that?
Like, can you hear it in your voice? Yeah. Yeah. Yeah. It's both shouldn't have to feel that way.
I'm sorry. We're back to it. Okay. That's okay. No.
No. I I you may it's Friday afternoon. Have all kinds of energy.
SandyStorytelling. Like, I like all of this. This is fine.
Scott BennerI'm glad. I'm glad. I'm I'm all upset today. They get you off the metformin. Maybe that's it.
I'm sorry. Go from there.
SandySo I was put on insulin because of what happened with the metformin, and I was pretty much handed an insulin pen. I met with a a nurse to show me how to inject myself with it, and that was it. I was told how much to give myself. No correction. No nothing.
I was given nothing. And so I started doing that, and I was really nervous. I didn't really know what I was doing. And so I think that was nova no. Wait.
It was the long acting
Scott BennerThey give you Lantus? They love they love remember Levemir. Lantus.
SandyLevemir. It was Levemir.
Scott BennerI was
Sandyput on Levemir. Yeah. So I was told what to do once a day, and we'll go from there. So I do the Levemir. And then at some point, I go back.
I don't remember how much longer. A few weeks after, I guess, I go back, and she's like, okay. Now you need to be put on fast acting insulin for when you eat. Mhmm. Again, I'm giving this with not a whole lot of direction.
Here here's your carb count. No correction dose at the time. Not even the the glucagon. Nothing. Like, here it is.
I have insulin. I really don't know what I'm doing. I'm doing the best that I can. I'm afraid I'm gonna go low Mhmm. Because I don't know how to treat it.
Scott BennerI would imagine you're out of your mind afraid.
SandyI was. Yeah. And I wasn't given a whole lot of direction really what to do if I go low or this or that, but I'm I'm doing the insulin. I'm doing the insulin. I keep going back to the endocrinologist to go over some things.
I had a friend who I found out was type one and, like, do you carry this with you? Do you have the glucogen? Do you have this? I'm like, no. Glucagon.
You need glucagon. Thank you. Knew I wasn't saying it right.
Scott BennerDon't worry. I've got you. Someone with no medical training. Somebody Yeah. Yeah.
Yeah. Good. Good. I'm good. Good.
Uh-huh.
SandySo he's like, you need to go to your doctor. You need to get this stuff. I go to my doctor. She's like, oh, yeah. Yeah.
Let me write you a prescription for this. And so I get that. And I'm doing okay, and everything's going alright. And I I'm on, I think, maybe two years. I'm on injectable.
And I was like, I really wanna go on a pump. Like, I hear about these pumps. I don't know anything about them, but I think it's gonna make my life a whole lot easier. I'm handed pamphlets. Choose a pump.
Talk with your insurance. Figure it out.
Scott BennerI'm sure they'd help you if they just had more time, Sandy.
SandyThey
Scott BennerYeah. If there was just more time, I'm sure she'd explain to you. It's not that the stories I hear the with the doctors go, I don't really know anything about the pumps. That's why I don't talk about them. It's not that.
And I'm sure the nurse would have helped you with, know, counting carbs and understanding your but just didn't have time. Everybody's very much. Busy. Yeah. Thank I walk out in the hall.
Everyone's leaning on the fucking wall.
SandyExactly. Yeah.
Scott BennerYeah. Okay. We're all super okay. I'm working. I just wanna know I want you all to know that.
If I'm awake, I'm doing something. Yep. Everybody else get to work. Oh, I'm getting angry. Oh, I'm having such a good time, Sandy.
Keep talking. Go ahead. That's okay. No.
The RADIANT Study & Finding Answers
SandyI just keep getting the brush off exactly what you're saying.
Scott BennerYeah.
SandySo I'm convinced at this point that I have a ladder. I do this research. I met somebody who has Lada. I talk with him, and he's like, that's what it sounds like. And I said, but I don't have the antibodies.
And I researched that it's possible that you can have Lada without antibodies. It's rare, but it could be. I was like, okay. I have Lada. That's I gave myself this diagnosis because that felt more manageable than type two at this point that wasn't being managed.
Scott BennerI was
Sandylike, I have an autoimmune problem. I could deal with another autoimmune problem. I don't want it, but it's here. Right. So I'm going to be okay with this.
So I get on a Facebook page about Lada, and I word vomit my whole story, everything that happened, and, you know, how this nothing makes sense.
Scott BennerRight.
SandyAnd this wonderful person gets on and on my post, and she's like, have you ever heard of radiant diabetes? And I
Scott BennerI Wait. Hold on. Radiant diabetes?
SandyRadiant diabetes.
Scott BennerGood. Good.
SandyI asked her about it. She said she's part of this study, and they research rare and atypical diabetes. And I was like, oh my gosh. Like, I really wanna do this. So I go on their website, and I'm thinking my luck, I'm not gonna get into this study because that's just how it goes for me.
Sorry to be a downer, but I fill out the application. I do everything. And within a few weeks, I get an email. I got accepted into the study. And I'm like, oh my gosh.
I got accepted. Like, it's rare that people get accepted into the study. I'm told there are people who fight to get into this study. And I was like, I got accepted into this study. I tell my husband, and I find out.
Scott BennerWait. Wait. Are we talking about the rare and atypical diabetes network? That's what radiant means? Okay.
SandyYes. Yes.
Scott BennerYou get into the study. I'm sorry. I cut you off.
SandyYou're fine. It's okay. I can just keep talking and talking and talking.
Scott BennerSo Sandy, I figured you I figured you out a little while ago. I know what's going on. Don't worry.
SandySo I'm emailing this person back and forth, and she's like, first, we're gonna test you for type one. And if that comes back negative, then we're gonna go on to stage two and three. I was like, great. So they do their own test. Of course, it comes back negative.
And she goes, now we're gonna draw blood to do a whole genome sequencing and to look for why you have diabetes, and then you have to do an on-site visit. So they're located in multiple universities around The United States
Scott BennerMhmm.
SandyWith doctors and researchers and nurses and stuff like that where you can go to do your insight visit. So I first go and get my blood drawn for my whole genome sequencing. So this was a year ago, which I still have not gotten back. I was hoping to get it back before this podcast, but I haven't.
Scott BennerOkay.
SandyThere's a whole thing with that, but it's fine. So I do that. And then in June or, like, May, I'm talking with them, and they're like, okay. We want you to go to one of our inpatient sites around The United States. Where do you live?
What does your life look like? And I said, look. I'm a teacher. I'm off for the summer. I can do go anywhere you want in the summer.
They're like, okay. You're gonna go to Chicago.
Scott BennerMhmm.
SandyI'm like, great. Get on an airplane. I go there in June. I spend a whole day with researchers, a nurse, like, all these fabulous people that listen to me. Yeah.
Mitochondrial Disease (MIDD)
SandySo before I go to Chicago, before I go, I'm researching everything that they test for for diabetes. And I I mean, there's, like, hundreds of things, and I'm going back and forth and back and forth and googling and all this stuff, and I come up with mitochondrial disease. And it was, like, me to a t. And I go to my husband, and I was like, please look at this. I need you to do some research.
He loves to research things, and he's good at it. And I said, please research this. Tell me what you think. He comes back to me the next day. He's like, this is you.
This is you to a t. And I and I said, don't tell anybody. I wanna go to my insight visit, and I'm gonna talk to them about it. So I spend the whole day. They're running all of these tests.
I had to drink that sugary drink, the Glucolla. Yeah. Couldn't take my insulin. My glucose goes up to 400, and I wasn't able to eat. And then they're about to bring me lunch and help me carb count, and the doctor walks in.
And he's helping me carb count, and he's going over my history with me. And we're talking about everything for a while, everything that I went through, everything that happened. And I did not bring up mitochondrial disease. And we're talking and he goes, I think you have mitochondrial disease. And I looked at him and I said, my husband and I researched this and we're thinking the same thing.
Scott BennerI would have had it written on a piece of paper in my pocket, I could have pulled it out and been like, was way ahead of you. But, no, that's awesome. Yeah. Yeah.
SandySo I actually have to back up. I totally forgot something.
Scott BennerOkay.
SandyReally important. So when I got diagnosed with diabetes, after I got diagnosed, my family kept telling me that I was not hearing them. I was not hearing things. And for a while, I was in denial. I was not listening to them.
Scott BennerWait. What's that? I can't what's that? Alright. Good.
You're good to you, Sandy. You're awesome. Good. We're Yeah. Yeah.
So
SandyI tell my endocrinologist, there's an audiologist across the hallway. She goes, if you wanna see an audiologist, I'll send you. Normally, I don't send patients until they're older. But if you wanna see an audiologist, go ahead. I go see an audiologist, lo and behold, I'm losing my hearing.
Scott BennerOh.
SandyAnd I had to get hearing aids. Where is that coming from?
Scott BennerI don't know.
SandyDon't go to rock bands. I don't work around loud noises.
Scott BennerRight. Right.
SandyOkay. So back to when I was in Chicago, and I'm talking to them about it. So I was clinically diagnosed with what's called maternal inherited deafness in diabetes, where it's a mitochondrial disease that affects my pancreas and my hearing and could affect some other organs in my body, but nothing else seems to be affected. But those are my two main things. And if you have mitochondrial disease, you can't take metformin because it will cause lactic acidosis.
Scott BennerGoddamn. You figured it out.
SandyFigured it out.
Scott BennerThat's pretty exciting, isn't it? You probably were like you probably felt like you won the lottery or the the or the Olympics or something. Put me up yeah. Look at you.
SandyI I was so happy. I I don't wanna be sick. I don't wanna have a diagnosis. I'm not sick. I take that back.
I don't wanna have a problem.
Scott BennerRight. Sure.
SandyBut I do. It's here, and I got an answer.
Scott BennerYou want less than not have an answer about something that you have a problem with. Like, you know, I I say all the time. Was like, look, nobody wants this, but if we have it, at least a good plan is a good plan. Yes. Yeah.
Yeah. And it does make you feel crazy.
SandyOh, I for everything that I've dealt with in my life, I finally felt validated. Yeah. You know, when you look at everything that I've dealt with, I'm like, that's mitochondrial disease. That's mitochondrial disease. That's mitochondrial disease.
So, like, short stature. I'm short. I'm five feet. My parents are not short. You know, there are just certain things that I have that doesn't run-in my family.
Scott BennerOkay. Wow. That's really that's astonishing that you figured that all out. Hey. Can I ask real quickly?
Scott BennerYes. Yes. Have the advancements of like, did AI help your husband through this? Like, was it a thing you couldn't Google in the past and figure out, but you were able to figure out because just because computing's different right now? The Internet's more connected or etcetera?
Using AI for Health Advocacy
SandyHe yes. He was. So my husband uses ChatGPT and all that stuff. Like I said, when we first talked, like, I'm not really into technology, but he likes to, yeah, likes to use all that technology and stuff to help him come to solutions or whatever, you know, whatever research he's doing. Yeah.
Scott BennerI have to tell you, if it wasn't for AI, and I don't know Adele, do you listen to the podcast, like, religiously? Because if not, you're not gonna know this.
SandyI do. I listen to you every morning in my classroom.
Scott BennerOh, okay. Well, then you'll you'll get the context here, everybody else that doesn't listen every day will will figure it out. But I would've never got my butthole fixed if it wasn't for AI.
SandyI would've sent to that. Yeah.
Scott BennerYeah. Yeah. Yeah. Because I googled that living crap out of that for years and nothing happened. And then one day, just said to ChadGPT, I said, hey.
I think I got I need help. And and it it in a split second, was like, have you tried this? And I was like, no. I'm like, wait. Where'd you find out about that?
And then it was just like, oh. I said, where can I get that done? The doctor's, like, seven miles from my house. I was so pissed. I was like, are you kidding me?
But, no, no matter how many times I googled it and all the different ways I thought to Google it, I came up
SandyIt with doesn't it's it's chat GPT that that works.
Scott BennerI came up with the, like, the I think probably the more common answers. Yeah. And then I I asked chat GPT or whatever. I don't know if it was Gemma. I don't remember anymore.
And it gave me all the common answers too, and I was able to respond to it and say, no. Those are all the common answers. Those don't work for me. Is there nothing else? And then it just went, yeah.
There's this.
SandyIt spits it out. Yeah. I'm becoming braver with chat GPT. My husband's teaching me, and I'm becoming braver with my diabetes because I still am navigating it by myself and your podcast. Thank you.
Scott BennerSure.
SandyAnd other people that I've talked to, and it really has helped me, like, with bolusing or how I'm feeling or my numbers or
Scott BennerOh, yeah.
SandyLike, if I'm having anxiety about something and I put it into GPT, you know, it kinda helps me figure things out. So I'm I'm getting braver with it, and it has helped.
Scott BennerSo Let me say this, and I'm sure there's some people who don't wanna hear about this. But I'm gonna tell you that I think that there's, like in the next twenty four months, you're gonna see the models are all gonna leap again, and then they're gonna wait a minute for the new chips to come out. And then once the new chips come out for the computers that power all this stuff, I think you see the models take another leap again. I think they're gonna be astonishingly better by the end of twenty twenty six, maybe sooner. And then the beginning, the middle of twenty twenty seven, I think it's over at that point.
SandyWe've had our own conversations over here about
Scott Bennerthat. Yeah. I I'm fairly comfortable telling you at some point, you're just gonna throw your graphs into a thing and be like, hey. How do I bolus for this? And it's just gonna tell you.
How long is it before I mean, there's a bunch of do it yourself, you know, algorithms. There's Loop and Trio and Android APS, blah blah. I mean, there's gotta be some that. Yeah. Some people have I mean, got to have dropped that code into this already and said, like, you know Yeah.
Can we make this I'm sure the people developing it are probably doing that. How do we make this better? How do we make it work? Like, you know, like, I don't know. I think you're real close to it.
Like, you know
SandyI'm I'm hoping. I mean, I need all the help that I can get. I finally did get on a pump, and I think everybody should be on a pump. I don't understand why everybody isn't. I love it, and it's helped me.
Scott BennerSo I'm glad it's helped.
SandyWhole d the looping and do it yourself and all that is way above me right now. Like, I can't even bring myself to that point at the moment. So maybe in the future.
Scott BennerSandy, let me let me just say this. There are people who can't afford pumps. They don't have insurance that'll cover them. Yeah. Some people are really scared of the idea that algorithms shut basal off, and they wanna always they always wanna have a background insulin in them.
And there's I mean, there's reasons. You know what I mean? Like, some people don't like stuff hanging on them. There's but I take your point.
SandyThey're I get.
Scott BennerYeah. They're incredibly valuable.
SandyI I get yeah.
Scott BennerI get diabetes tomorrow. I'm getting an insulin pump. I just want you to know.
SandyI just haven't talked to many people on a pump, so I don't, like, really get a whole lot of feedback. Like, I know two people with type one diabetes on different pumps, and they love them.
Scott BennerMhmm.
SandyAnd so but I don't I haven't had, like, a whole lot of connection with people. So and I know everybody has their own opinion. For me, it was the best thing that I did. It's worth every penny that I sink into it every month.
Scott BennerGood. Well, I'm I'm glad, you know, I'm glad for you that it that it's valuable and that you found a way to do it and everything. Yeah. Yes. Tell me more about mitochondrial disease.
Like, what what did you what have you learned since then?
SandySo I'm learning very slowly that pretty much you treat symptomatically. So like I said, I did not get my whole genome sequencing test back. So I don't have anything on paper yet. This is from a doctor through Radiant Diabetes, and I know that I fit that diagnosis. It all makes sense.
So I am going with that. I'm hoping in the next few months I have everything on paper, and then I can find somebody to help me. But from what I'm learning, reading, and on chat GPT, you treat symptomatically. So I'm on insulin. I'm wearing hearing aids.
If any other functions start failing, then I go see that kind of doctor, that ologist, and have them help me through whatever is helping. Like, if it's a cardiologist or a urologist or whatever.
Scott BennerMhmm.
SandySo there is, like, muscle issues and things that I know that I'm starting to deal with, but I can't find help right now for that because I don't have things on paper. Because once again, we're dealing with doctors not having time, and especially if you don't have something in front of you to hand them, it doesn't exist. Okay. So
Scott BennerSo they're waiting for you to tell you what's wrong with you too?
SandyI guess. I mean, I've gone to doctors and I said, hey. I have this clinical diagnosis. This is what's going on with me. Well, you look fine, so you're okay.
So we're not going to help you. We can't help you.
Scott BennerJeez.
SandyYou're treating your diabetes. You're treating your hearing loss and whatever else is going on.
Scott BennerWhat else do you have going on? So you're short stature. Your hearing's an issue. Yes. What else do you think is impacting?
SandyDiabetes, I have small hands, small feet, which also go along with it. Digestive issues. I've had digestive issues my whole entire life. Also, learning disabilities can be part of mitochondrial disease, which I do have a learning disability, not a severe learning disability. But so, yeah, things like that.
Muscle pain, joint pain
Scott BennerWow.
SandyThings that I've that that I've dealt with. Yeah.
Scott BennerYeah. Yeah. Yeah. My gosh. Oh, through your whole life too.
SandyYeah. I mean, not nothing's been severe. Like I said at the beginning, you know, everything's kind of been in the gray, you know, and I I live, I work, I I do my life, but it's been in the gray. You know? And as I get older, my body's starting to punk out because it's not getting enough energy because of mitochondrial disease.
So certain things are just starting not to work properly now. That's what I was told. This type of mitochondrial disease does hit between thirty and fifty, and so I was started really getting major symptoms in my forties with the hearing loss and diabetes.
Scott BennerOkay. Does anyone mention Wolfram's to you? No. Does that come up? No?
SandyOkay. No.
Scott BennerI'm just I'm trying to I don't know a ton about this, so I'm trying to, like, pick through it as well.
SandyNo. No. No.
Scott BennerI've had a person on who has that. That's just what I was asking. Yeah. I
Sandymean I I've read about it. You know? I mean but yeah.
Scott BennerHow can it bring on type one, though?
SandySo I guess my pancreas is not getting enough energy to produce, what is it, the beta cells? I don't know. I I'm probably not using proper terminology. I really know what I'm talking about. I'm gonna be honest.
I'm still learning, but my pancreas just isn't doing what it should be doing because it's not getting energy to do it.
Scott BennerOkay. So I'm gonna tell you I'm gonna tell It doesn't sound right. No. No. What what I have here is that it says, maybe a cleaner way to think about it is that mitochondrial disease can cause a different kind of diabetes that can look like type one because the pancreas stops making enough insulin.
Right. In mitochondrial die in mitochondrial diabetes, the problem is often the damaged mitochondrial in mitochondria in the beta cells cannot make or release insulin normally. The insulin shortage can make someone look insulin dependent, and they may even be mistaken for type one at first. Classic type one diabetes is different. Of course, we know how the how how type one works.
SandyRight.
Scott BennerSo mitochondrial diabetes, insulin production fails because the cell's energy machinery is impaired. There's some research showing that mitochondrial dysfunction is involved in bile in the biology of type one diabetes, especially in beta cell stress and injury during autoimmune inflammation, but that is not the same as saying you have mitochondrial disease by itself. Right. Causes classic autoimmune type one. The stronger clinical point is that mitochondrial disease more often causes a non autoimmune diabetes subtype that can be misdiagnosed as type one or type two.
SandyJeez. So that's what happened to me. That's why I was misdiagnosed as type two.
Scott BennerWhat a role. But Yes. But treat it like a type one because it works that way.
SandyThank you for bringing that up.
Scott BennerNo. No. No. No. I couldn't hear
Sandysaying all that. I appreciate that. Because one of the things I wanna do is when somebody like me walks into a doctor's office, I want doctors to have information to be able to look more into what this person is dealing with, and that's what Radiant Diabetes is doing.
Scott BennerYeah.
SandyThey're they're trying to get information out to doctors. I you know? So that when somebody like me walks into their office and they are not presenting either type one or type two and they're just presenting all weird and not even Modi Right. Because I got tested for Modi, that came back negative. What else could it be?
And so they they test for all sorts of things.
Scott BennerYeah. The mitochondrial issue is not just magically making you type one. Like, it's Correct. It's giving you diabetes that mimics type one
SandyCorrect.
Scott BennerAnd in different way. Yeah. So it it just says here that a doctor will look at autoantibodies, c peptide, family history.
SandyPeptides have been fine. Like Yeah. They've gone to low normal to reg you know, and a little bit above. So it my pancreas is working. So yeah.
Exactly.
Scott BennerWell, I I mean, you have a an incredibly rare thing inside of a an already rather rare thing. Not a ton of people on the planet with type one diabetes and, you know, not not based on the the overall population at least. Wow. And is there anything they can do for the mitochondrial issues? Can they treat it anyway?
SandySo I'm told or what I've read is that there's, like, what's called Mito with different supplements with co q ten being the number one thing to take. And then depending on what kind of mitochondrial disease you have and what kind of deficits you might have, doctors will come up with these cocktails that may or may not help. Some people say that they help. Some people say that they don't, and they have to readjust, with l arginine and some other supplements that they could take. So it's it's a cocktail.
Scott BennerMhmm.
SandyI've tried to start, you know, like, taking co q ten and a few things myself. But, again, I don't know what would be the right thing for me to take and in what amount and how is it interacting with other things that I'm on, hoping at some point to find some guidance of somebody to be like, okay. Yes. You have mitochondrial disease. Let's come up with a cocktail for you to see if that will help you feel better.
Scott BennerAre you having any luck finding a doctor that specializes in this?
SandyNo. So there are a few doctors around The United States that do specialize in mitochondrial disease. I really have not reached out to any of them Mhmm. Yet because I don't have my whole genome sequencing in front of me, which I've even said, you know, let's start from the ground up and, you know, do different testing, whatever. I did try to get into a hospital here close to where I live, and they said no.
So
Scott BennerThey said no? Why did they say no?
SandyBecause I'm just not weird enough. They didn't have enough information. I was not cool enough. I don't know. To join their club.
I don't know.
Scott BennerI don't think that was it. You imagine that. I don't know. You imagine if they were like, we would, but you're not quite cool enough.
SandyYou're not quite cool enough.
Scott BennerAre you I mean, obviously, you're you're you're very much paying attention to this. So you're worried about further problems in the future? You're worried about your heart, about seizures, things like that that could come from all this?
SandyYou know, I don't. I'm trying not to. So I know that seizures and strokes could be something in the future. So so I have what's called MID, maternal inherited deafness and diabetes, and there's, like, a scale where at the other end of the scale is MILAS, where that's where the stroke and seizures can possibly start happening. Doesn't always happen.
Doesn't always go that route. So I'm not trying to think that far right now. I'm thinking, like, I'm doing okay.
Scott BennerMhmm.
SandyI did find an excellent cardiologist that has done a workup on me. My heart is doing great.
Scott BennerCool.
SandySo I just have high blood pressure, so he's working on that with me. But just everything else, I'm just taking it step by step and in stride.
Scott BennerYeah. How about in your family line? Are there any women on your family line who have had these sorts of issues that in the past nobody would have been able to figure out?
SandyNot that I know of. Okay. It's possible, but there's no documentation, and I haven't heard of that. So it is passed down through mother maternal Yeah. Through the mother.
So every kid gets it, but then it stops at at the son. But the daughter can pass it on, and then everybody has their own variation whether they have symptoms or not of it from what I've read. Mhmm. So, like, I have a sister. I don't think she has symptoms of it.
Scott BennerOkay.
SandyI think she's fine. Like, I've given her the information, but I don't think she's dealing with what I'm dealing with. My mom I look back to my mom when I was growing up. I think my mom dealt with some of the stuff that I'm dealing with, and they're just she was never diagnosed.
Scott BennerSure. She alive still?
SandyYes.
Scott BennerOkay. Listen. I am not a doctor. I think it's pretty obvious if you listen to the podcast, and I'm certainly not giving you advice. But you could go to our overlords, ask what isn't a common Mito cocktail, and then ask how you might decide what the dosages of those things should be.
And it's possible that
Sandywe done that. Yeah? Yeah. I'm just so afraid right now, especially with what's happened to me, but I have done that. And I had g chat GPT put me out of schedule.
But, also, some of my I hate saying medications. Like, I feel like I'm on all these medications have changed and are kind of changing and adjusting that I'm afraid to add anything else into things until something's calmed down.
Scott BennerMhmm. Mhmm.
SandySo but I have done that. So that's where my husband made me brave.
Scott BennerGood. Good. I'm glad. Yeah. I it's funny because when you're talking so when we first started we started to record, you said I'm kinda nervous.
Are you still nervous? No. No. Not anymore. And you're very boisterous, and you're very willing to tell your story.
But then privately and personally, you get you're scared to do things sometimes.
SandyI am. Yeah. I I just because I've been through a lot the past six years, and I'm afraid of something bad happening again. And since I don't have medical guidance, really
Scott BennerMhmm.
SandyLike, I wouldn't even know who to go to if something happened or what to do. So I'm just trying to do what I know what to do, take care of what I know what to take care of and how to take care of it. And then I'm waiting for things to slowly I'm not waiting, but things are just slowly unfolding and unraveling for me. And I just you know, it's been six years since everything has started, so it's just gonna be a longer journey, and I have to be okay with that.
Scott BennerYeah. Yeah. I mean, listen. I don't again, apropos of nothing. I and I barely got through high school.
It's very important to remember all this. Like, I don't there's nothing crazy in this cocktail. You know?
SandyI oh, you're reading it.
Scott BennerRiboflavin, creatine, alpha, lipic No. You're acid, vitamin c, vitamin a, other antioxidants.
SandyIt's like I have to, like I put so much energy into going to a doctor or finding a doctor, dealing with something, and then, you know, it's a lot. So then I have to take a few step back. And that includes your podcast. Like, I really wanted to come on and talk to you Yeah. About this because I wanna get information out to other people.
But it took me time to be like, okay. I'm gonna reach out to him so that I can get on the podcast and I can talk about what I'm going through and dealing with so that other people can hear it. And, hopefully, I can hear other people, but it's like, I could take three steps forward, then I have to take two steps back. So it's like, I can't do everything all at once because I'm dealing with a lot of different things.
Scott BennerYeah. No. Well, having said that, pure encapsulation makes a mitochondrial support vitamin.
SandyYeah.
Scott BennerI mean, you know, what the hell? I'd pop a couple in and see what happens.
SandyI mean, I just might once I get off with you, you might I might feel so energized and be like, you know what? I'm gonna feel brave now, and I'm gonna do this
Scott Bennernow. Listen. It's I look. I'll read it right off the bat. Vitamin c, vitamin e, thiamine, riboflavin, which is vitamin b two, magnesium as magnesium citrate and malate.
Jeez. Nicotineamide riboside chloride. Don't know what that is. Creatine monohydrate acetyl l carotene trans reversal knotweed. You know?
I mean, cysteine lipoic acid coenzyme q ten. I mean That's
Sandyq ten.
Scott BennerYeah. I mean, listen. What are we doing? You already have a ton of problems. If this thing does you in, yeah, just call it it was gonna happen anyway.
You you know what I mean? But,
Sandylike I mean, I could get to that point. Like, let's just do it. You know?
Scott BennerI mean, honestly, like
SandyWe shouldn't do it. Yeah.
Scott BennerI mean, I I I mean, if a vitamin listen. You have a lot of problems. If the vitamin kills you, you were fucked one way or the other. It's not a different thing.
SandyI mean, you gotta look at it that way.
Scott BennerRight? I swear to god. If this vitamin puts you under, you you were on your way anyway. Okay? Just let it be.
What What do you argue with the world for? Let me see something. Listen. It's Amazon. Right?
But but but, reviews are from people using it are are pretty solid. Yeah. You know? One person said it didn't work for them out of the first 10 reviews. I can't tell any difference after three weeks of that person said.
Everybody else is like, my practitioner recommended this. It's a good energy source. I have more energy. It gives me more energy. Interesting and quality formulation.
You know, I don't mean they're just people's reviews. I don't it could be, you know, could be bots. I have no idea. I was just about to say
Sandyit could be chatbots making the reviews. But, again
Scott BennerBut Pure's a really reputable company. And and and these are expensive. They're, like, $82 for a 120. That's pretty pricey. You know what I mean?
SandyJust throw that into the pot with everything else that
Scott BennerBut listen. How many are you supposed to take a day? Let's look here. I don't know. I know.
Two capsules a day, it says. So you get sixty days worth of a shot at it for $82. If you feel better, God bless. And if you don't
SandyI mean, honestly, like, I you know, my pump is worth everything that paying every month. So, like, if that was to make me feel better, you know
Scott BennerHonestly, what do we it's like a thousand $900 a year maybe. Yeah. And if it helped, then then right on. Yeah. Yeah.
Yeah. Yeah. I listen. I I'm a I'll try anything. I you know, like, just just to see what's up.
God, I I shouldn't say this here. Just because if it's, you know, whatever. Arden's boyfriend was over recently. I was like, are you taking vitamins? And he goes, no.
I'm like, what is wrong with you? And I threw I threw because he's talking about how he feels, and I, like and I and I and I threw a bottle of vitamins on him. I said that those are on me. Take two every day. I see you taking vitamin d?
No. I said, look at how pale you are. Take vitamin d. I gave it to him because I'm I'm what they call him, Mench. I don't know if you know the word.
SandyYes.
Scott BennerYeah. Sandy, actually, I know you know the word. Don't worry about it. I can tell. So and and, yeah, he's had them for three, four weeks now.
He came over the other night. I said, are feeling? He goes, you know, mister Banner, I have a lot more energy. I do feel better. Oh.
And I was like, oh. Then I looked at Arden, who won't take the vitamins I give her. And I was like, mhmm. And she looked at me like and I she didn't say this out loud, but I think the look on her face said, leave me the fuck alone. And so and I was like I was like, whatever.
I just laughed and I went about my business. But listen. In the end, your body needs certain building blocks every day.
SandyYes. Exactly.
Scott BennerAnd we all certainly don't eat in a way that's gonna provide them all. And there's already a ton of other issues. I don't see the problem with throwing them in there just to see if they help. Like, you you know what I mean? Like, it's not gonna hurt.
You ate an Oreo. Not. Like, I imagine, like, you eat you said you ate an Oreo.
SandyYeah. I mean, I'm not exactly yeah.
Scott BennerI don't know. I'm in scary. You know what I mean? I know. Fuck you thinks in that Oreo.
SandyLike my almost my whole life.
Scott BennerYou you also have mitochondrial disease. Yeah. I I know. You're five feet tall. That's very short, by the way.
SandyIt is. It is very short.
Scott BennerI Arden one of Arden's friends is, like, five feet tall. Every time she walks I've known her for twenty years. Every time she walks in the house, I think, god, that kid's short.
SandyI am. And I teach four and five year olds, so it's like I kinda blend in really well.
Scott BennerYeah. For feel like these kids could kick my ass if they wanted to. Arden said to me the other day, she goes, hey. Let's take some online quizzes. And I went, okay.
And then one of them and now they're not even quizzes. They're just like, hey. What do you think this or that kind of stuff? Would you rather Yeah. Bees live in your whatever?
Like, that kind of thing. And she says to me he said, here's one. She goes, how many small children do you think you could beat up?
SandyOh, gosh.
Scott BennerAnd I and I go, how big are they? And she she says, it doesn't say. I'm like, well, that's an important thing here. It is important. So she picks through, and she goes, oh, everybody in here is like, how how old are they first?
And and and she's like, well, why? What do you think? I said, well, I think of a certain age, I could beat them all up. Like but I was like, you know, like I said, once I think they get into 10, 11, 12, they could probably gang tackle you. You know?
They get I mean, that's when
Sandythe hormones start hitting, you know, like, third, fourth grade and yeah.
Scott BennerYeah. I I even think maybe enough eight or nine year olds could get ahold of your legs, put you on the ground. But, I mean, you send a hoard of five year olds at me, I think I could come up. You know what I mean? Like, I'm pretty good.
They're little and they don't have a lot of dexterity. You probably just pop them in the head. They go over, like, I would imagine, you know, like bowling pins. So, I mean, I've never hit a child, so I don't know exactly what happens, but you gotta figure it can't be difficult.
SandyYeah.
Reptiles & Wrap Up
Scott BennerYeah. Yeah. So, anyway alright. Is there anything we haven't talked about that we should have, Sandy? Anything I left out?
SandyNo. No. I mean, I, yeah, I mean, I talked about the mitochondrial disease and and my diabetes. I think I've hit everything.
Scott BennerThyroid, diabetes, mitochondrial, little bit of fun in there. I got the whole thing in an hour like it was nothing. I'm a pro.
SandyYou are. I was wondering how like, how do you get it all in an hour? Like, I felt like there was so much to talk about.
Scott BennerJust gotta know when to pivot. That's all. Yeah. Like, you know, people aren't gonna know this, but you had trouble getting on. Like, I I now I'm realizing it was probably part of your your hearing aids were probably part of the problem when you're first trying to get going.
Right? They're Were they connected to the wrong thing or something?
SandyI don't know. I'm gonna I could not tell you. I don't know. Like I said, technology and me just don't jive, and I just
Scott BennerI got to hear Sandy upset before we were doing it. She sounded like Fred Munster when he gets pissed. I don't know. That's a here's a reference nobody's gonna get. And then you said you're a little nervous, and I never said to you the thing that I would have loved to have said you back then, which is I think the podcast is great because people like you who don't even have a microphone and would never normally do something like this are willing to come on and say, hey.
I don't know exactly, but here's what's been happening to me. I think that's way more valuable than someone coming on and spitting out some knowledge that they have that they say over and over again every time somebody points a camera at them or or a microphone at them. So Yeah. I think it's really valuable, and I appreciate it.
SandyWell, I appreciate you letting me come on. I didn't know, like, what your schedule is like or anything. And then, you know, like I said, I wanted to come on because I wanna pass along this information to anybody else that might be dealing with what I'm dealing with, and maybe they'll give them an epiphany. Maybe they can, you know, look into radiant diabetes, get some answers, and then maybe if somebody out there has any answers for me.
Scott BennerYeah. They can reach back to you. Listen. First of all, I record every day. Not to say schedule's a bear, but it it's, very manageable as I am an adult.
And I live in a warm and cool home depending on the year, and I have electricity. So I'm okay. I can make a podcast. I just think that these conversations are really valuable, and I think that, especially with the way things are going now, you know, I I almost see some of these conversations as blog posts in as much as that, like if I asked you to sit down and write this all out, I don't even know if you would have thought to, like I heard
Sandyyou talking about this before.
Scott BennerYeah. Like, they're just it's it's a collection of information from your perspective. It goes on the Internet, and, you know, all these AI models are all they're doing is scraping the Internet. So let it you know, you're not right about everything, but you are right that this is your experience. So Yeah.
You know, let let people's experiences pile up in in some sort of data record. Maybe it'll help us one day.
SandyI do have a question for you Please. On on the side. So I saw, like, you were building, I guess, your basement, a room, like, for your podcast, and you were talking about a reptile room. Yes. So real?
Scott BennerWell, it's not a whole room. For listen. Let's try not to make me sound crazy, Sandy. Okay? But no.
No. I know you love them probably because of your job.
SandyI do. I have reptiles. So that's why when I read that, is for real?
Scott BennerWhat do you have? We have to make this quick or Rob's gonna yell at me that I went too long. But but
SandyWe have, I think, three or four snakes, and I have a bearded dragon right now.
Scott BennerWhat kind of snakes? Are they colubrids? Are they what do you have?
SandyI think a rosy boa
Scott BennerMhmm.
SandyA Mexican black king Oh. And I don't remember the other
Scott Bennersnakes up black kings, they're fat. Right? No?
SandyNot fat long.
Scott BennerLong? Six, seven feet?
SandyYeah. Yeah. They belong to my husband and my kids, but we've had lots of reptiles. So when I when I saw that, I got really excited.
Scott BennerWas like, well, I'll tell you what I listen. I'll tell you what I have. What but tell me first about owning a bearded dragon. People who have bearded dragons love them.
SandyThey're so easy. I had it's my classroom pet right now, and we've had bearded dragons before. They're super, super easy.
Scott BennerOkay. Yeah. And they're is yours friendly? Handleable? Yes.
Sits on your shoulder, that kind of thing?
SandyYes. I take her out for the kids to touch and stuff. Yeah.
Scott BennerYeah. How does the poop? Not too bad smelling or is it okay? No. No.
SandyNot bad at all.
Scott BennerGood. Good. Good. Alright. Here's what I have.
Prepare to be impressed. I have a male Parsons chameleon.
SandyNice.
Scott BennerHe's about three years old. He's probably not quite full size, but he's probably tip of his nose, tip of his tail. He's about two feet long.
SandyOkay.
Scott BennerHe I forget. I haven't weighed him yet this year. He's been he's not he doesn't brumate, but he'd been a little slow over the winter. He really he kinda picked the corner of the enclosure and just hung out for a couple of months. I recently got a yellow tree monitor.
SandyWow. Okay. I am I'm getting impressed.
Scott BennerShe's very cool. I'm still she almost tolerates me now, which is nice. I have actually, I'll tell you this because you'll find this interesting. The Parsons chameleon is bred by one of maybe a handful of people in the whole country that breed them, that man's daughter who, has type one diabetes. I have a blue ambanja panther chameleon from Fram's cams, and they have a connection to type one as well.
SandyOh, wow.
Scott BennerThis is not something I knew before I bought it from him. He is beautiful, but he's so dumb. It's just like, he has been over top of a cup of crickets for four hours looking at them. Like, just eat one. Like, what do you it's like you with the vitamins.
I don't know what he's waiting for. Just eat the damn cricket. He won't. He'll stare at it for hours, then finally, he'll be like, okay. Fine.
He'll
Sandyeat My beardie's afraid of cricket. She'll go to the other side of the tank. So I only give her worms and stuff like that because if I put crickets in, she goes to a corner.
Scott BennerShe's an adult. She eats vegetables too and all that?
SandyYeah.
Scott BennerYeah. Yeah. Then I have oh my god. I have a small colony of Tachydromus smaradinos. They're, Japanese grass lizards.
Yeah. And I have a male and female Sri Lankan pygmy lizard. So they're these little tiny very if you Google them, they're very pretty, very cool, ornate. Alright. Really and they breed.
I actually just took two babies back to the breeder who I got them from. He's a friend, and I I give them to him and he, you know, he sells them again. I just like that
SandyYeah.
Scott BennerYou know, I don't I don't even ask him for money. I'm just like, here. Just take them. Meanwhile, they're, like, $600 apiece. I should probably ask
Sandyhim for more.
Scott BennerYou know, they're endangered, and I know I'm not doing anything to repopulate the world with them. But it makes me feel good when she has the babies and, like, pass them back out to people. The tree monitor is just wicked. Like, that was that.
SandyMonitors are awesome. I like them.
Scott BennerMy goal would be that in the next two years, maybe she'll willingly go onto my forearm. They are not something you're trying to handle or anything like
Sandythat. Right.
Scott BennerYeah. Right. The Parsons doesn't want you anywhere near him. Yeah. Right.
He is majestic. Like, it it's hard to I I I wouldn't know what to do if you told me just to keep one because the the grass lizards are incredibly, entertaining.
SandyYou have a nice collection.
Scott BennerIt is impressive. I have an eclectic collection of lizards as well. Yeah.
SandyWe've had more just since the kids have gotten older and life and stuff. Our population of animals have dwindled a little bit. But yeah.
Scott BennerYeah. I'm gonna be looking for a local kid to come by and feed them for me at some point because I'm gonna lose my my my feeder's gonna go off to grad school, and then I'm gonna need to figure out something else for when I go away.
SandyThere'll be somebody around who would do it and wouldn't love it.
Scott BennerIt's nobody in this house. I'll tell you that much. These kids hate these bugs. So and I'll I'll I'll finish embarrassing myself and impressing you by telling you that I I am a I keep a pretty impressive, Dubia roach colony that I've been I've had going for, like, a year and a half. I'm pretty
SandyThat is pretty cool.
Scott BennerImpressed with myself. But, yeah, there's a box of roaches in here. Nobody try not to think about it. That's what I do. And that's what most of these It's
Sandyjust like if people who keep rodents and stuff like that and breed them for their snakes and whatnot.
Scott BennerYeah. Yeah. Yeah. Have to. I have to tell you, snakes don't interest me.
SandyMy husband loves snakes. That's, like, his passion. He loves snakes. Knows all about snakes.
Scott BennerYeah. I will tell you though that since I've gotten the monitor, I understand people with snakes better because she is basically a snake with four legs. Some like, I look at her. You know what I mean? Yeah.
The Parsons sits around. It's fine. I don't care because he is it there's something about he is majestic. Like, it's the only way I can really put it to you. Like Yeah.
Like, I if he didn't move, I wouldn't care. But watching the monitor run around and the grass lizards do the same thing. The grass lizards are actually lacertas. They're not that that that probably just put me into a different dork.
SandyTo look those up. They look pretty they sound pretty
Scott Bennerinteresting. Might have put me to a different dork level saying lacertas just now. But
SandyNo. I know what you're saying.
Scott BennerSo no. Yeah. And I'm
Sandyon the same level.
Scott BennerAnd I'll tell you, this summer, I'm actually planning on making a a limited podcast series with the keeper who breeds a lot of this stuff because he's such be cool. Yeah. It'll be it's not for me. It'll be on his own podcast, but I'm I actually think I'm gonna host it and and record it for him because I think his knowledge should be out in the world the way he's really something. Yeah.
So I'm gonna try to help him with that. Anyway, let me get off before poor Rob pulls all of his hair up. You were awesome. Thank you very much. I appreciate it.
SandyI hope it all sounded good.
Scott BennerIt sounds awesome. You sound terrific. Thank you. Alright. Hold on one second for me.
Okay? Yes.
Closing & Sponsors
Scott BennerHead now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. A huge thanks to US Med for sponsoring this episode of the juice box podcast.
Don't forget, usmed.com/juicebox. This is where we get our diabetes supplies from. You can as well. Use the link or call (888) 721-1514. Use the link or call the number, get your free benefits check so that you can start getting your diabetes supplies the way we do from US Med.
The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense three sixty five. That thing lasts a whole year. One insertion? Every year?
Come on. You probably feel like I'm messing with you, but I'm not. Eversensecgm.com/juicebox. Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast.
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