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Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

Filtering by Category: Juicebox Podcast

#1357 Caregiver Burnout Series: Part 2

Scott Benner

Negotiating the emotional and psychological burdens that caregivers experience, with Erika Forsyth.

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

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

Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox podcast.

Erica and I are back again today with part two of her caregiver burnout series. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box. Don't forget, if you're a US resident who has type one, or is the caregiver of someone with type one, visit T 1d, exchange.org/juice, box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help if you're looking for community around type one diabetes, check out the Juicebox podcast. Private, Facebook group Juicebox podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me. I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year where CGM, that's one insertion and one CGM a year, one CGM, one year, not every 10 or 14 days ever since cgm.com/juice box. This episode of The Juicebox podcast is sponsored by cozy Earth. Use the offer code Juicebox at checkout at cozy earth.com and you will save 40% off of your entire order. This episode of The Juicebox podcast is sponsored by the insulin pump that my daughter wears. Omnipod. Learn more and get started today with the Omnipod dash, or the Omnipod five at my link, omnipod.com/juice omnipod.com/juicebox,

Erika Forsyth, MFT, LMFT 2:24
Erica. Welcome back. Thank you. It's good to be back.

Scott Benner 2:28
Excellent. I love seeing you, and we're here to add another episode to your caregiver burnout series. This is going to be episode two. Yes, would you give me kind of an overview of what you think this one's about? Yeah,

Erika Forsyth, MFT, LMFT 2:41
yeah, so. And just as a quick summary that we're going through six themes, but we're going to be talking about them through the kind of the lens of a barrier to why it's so hard to take care of yourself as a caregiver. The first one we talked about was experiencing chronic sorrow. Today we're going to be talking about assuming responsibility for glucose highs and lows and again, these six themes or burdens or barriers have been identified through research that has all the research has ever been conducted on caregiver burden, caregivers to, you know, children with type one. So yes,

Scott Benner 3:20
can I just ask quickly, does this apply to other people, like, if I was caregiving some other illness? Would this apply? Or is it very specific to diabetes?

Erika Forsyth, MFT, LMFT 3:29
The themes that we are going through are specific to caregiver burden within diabetes, but caregiver burden can be applied to any caregiver, obviously taking care of and a loved one with a chronic illness or any, any illness really, but specifically we are going looking at through the lens of diabetes, I guess. Okay, all right, excellent, okay, so assuming responsibility for glucose highs and lows, this is obvious, because you as the caregiver are most likely making the decisions right of how much and when to dose and like we did in the first episode, where I'm going to read a quote from the research that will probably hopefully resonate with you. This is from a parent in the research. So this parent says it's kind of a guessing game. I know it's based on math, but diabetes doesn't always listen to math. No matter how hard we try, diabetes is going to sometimes just throw us a curve ball. I'm trying to do my best for my son's diabetes, but I can't. I can't keep it on track, which is very frustrating. It is scary to think I'm causing serious damage to my son's body, that's heavy. That's heavy, yeah, and the and this is going to be a little heavy in the beginning here, because it is hard and complicated, and the fear and the risk of of a low and a high is real. And so I I'm not minimizing the the true sense of responsibility around. Of that experience as the caregiver, as I already said, you know, you are the one, particularly if your child is younger, you are making the dosing decisions along with your Endo. But if you're, you know, taking on the independence and ownership of changing carb ratios, of changing basal rates, of changing anything in terms of the insulin dosing and treatment you are, you are carrying that sense of responsibility. So I just want to highlight and emphasize and validate that, yeah, absolutely okay.

Scott Benner 5:30
Yeah. We're not saying anything here like, Oh, don't worry about it. It's okay. We know. Just let

Erika Forsyth, MFT, LMFT 5:35
it go. It'll be fine, yeah. And this is, you know, this is as we talk about caregiver burden, the psychological and emotional burden experienced by caregivers is this anxiety, right? Relate caring and maintaining the glucose levels within this range, right? Whether it's a clinical range or an ideal range that feels good for you, you are living within that pressure to maintain that, and particularly in the beginning, this responsibility when you're discharged from the hospital, you're living with this I don't even understand what diabetes is, and now I have to try and keep them within this range, the sense of powerlessness and failure and fear and guilt associated with that, with that challenge, and that inability to maintain your child's glucose level within that recommended ideal range is so intense, right? As as you hear on the podcast, as I experience with my own clients, and also research affirms that there is hope in this journey, right, like the responsibility that you bear in the beginning is so intense and in seasons of change, right, like through growth periods, through changing technology, there is that intensified feeling of responsibility to learn how to manage and reduce the highs and lows. But research does affirm that over time, as you have more knowledge, more experience, more mastery, that the parents in all of this research feel more empowered and validate that they have a reduction in their perception of stress, and that all contributes To the reduction in mitigation of the caregiver burden.

Scott Benner 7:22
Does that only come from mastery? Like, getting better at diabetes, quote, unquote. Like, is that where that comes from? Or, do you, I mean, because I'm thinking that I've gained some perspective over time too, about, you know, well, if her blood sugar is 150 for a couple of hours, like, you know, it's not the end of the world kind of a

Erika Forsyth, MFT, LMFT 7:42
thing. Mastery and experience, as we say a lot, right in our community, that it is a time learned experience, that over time, you learn how your blood sugar, or how your child's blood sugar is going to respond to certain variables, right? So we always are going to have the unknown variables, but over time, you do learn. So it's it's kind of that combination of, you understand how the insulin is working, how the how your body and your child's body is working and responding to the insulin, and then you become more confident in that, in that journey.

Scott Benner 8:17
Does it happen for everybody? Or are there some people who get stuck on the this is killing them. Feeling that

Erika Forsyth, MFT, LMFT 8:24
is a good question. I think we can, we can transition into like, what? What can you do? Right? Because we're, we're talking about this as we all, you guys are living and know this burden and the responsibility and what happens if it's been weeks, months, years, and you're still living with this sense of like this parent says it is scary to think I'm causing serious damage to my son's body. And if that quote is resonating with you, that you are feeling that and thinking that on a consistent basis, I think we can, let's, let's transition into, what can you do with that if it isn't if you haven't developed that competence and confidence over time? So getting into the tool, right? So we're going to talk about the burden or the barrier to self care, and then the tool, and we're going to talk about some self talk tips today that we have sprinkled in across our various episodes, but I hopefully today will be, will be helpful to focus in on some self talk tools. Before we do that, I do want to to talk about the psychological implications of devices, not only for, obviously, the person wearing the devices, but as as we've discussed before, there's it's such a benefit and blessing and bonus to have all of this data in our hands all of the time, if your child is wearing a CGM, and it helps us, it informs our decisions. But also, there isn't a lot of research and interventions of like, what do you do if. Is causing so much anxiety for you as the caregiver, when we when we did not have CGM, were caregivers living with this intense anxiety? I don't know, maybe, but now you're in this, like, this constant feedback loop of information, and if you're living, if you're already kind of run in an anxious space. How is that impacting you? You know, it's different for everybody, but I think just to note that there are real psychological implications for these. This great all the technology and devices that we have, and we're trying to kind of catch up, right? And say, how do we live with all of this?

Scott Benner 10:41
Well, it can feel like, I've heard reported back from people, right? That the information, it feels valuable if you know what to do with it, and if you don't, it could just be a sign that says, hey, you screwed up. Hey, you screwed up. And, you know, and sometimes, every five minutes, it'll tell you that, that's right. It's funny, because some people can receive, you know, can receive information like that and just think, Oh, I did the wrong thing. I wonder what to do next. I'll try again. And some people, it hits them much deeper, and, I would say, freezes them to some degree, right? And then all they hear is, I'm doing it wrong. And the rest of it kind of melts away. Yes, yeah, that's yes, yes. This episode of The Juicebox podcast is sponsored by the ever since 365 get 365 days of comfortable wear without having to change a sensor. When you think of a continuous glucose monitor, you think of a CGM that lasts 10 or 14 days. But the Eversense 365 it lives up to its name, lasting 365 days. That's one year without having to change your CGM. With the ever since 365 you can count on comfort and consistency. 365 days a year, because the ever since, silicon based adhesive is designed for your skin to be gentle and to allow you to take the transmitter on and off, to enjoy your shower, a trip to the pool or an activity where you don't want your CGM on your body, if you're looking for comfort, accuracy, and a one year wear you are looking for ever since 365 go to ever sense. Cgm.com/juicebox to learn more. This episode of The Juicebox podcast is sponsored by cozy Earth, and right now I'm looking at cozy earth.com to see what's going on. I got, oh, look at this bamboo pajama set for ladies. The jogger pants for ladies looks like plush lounge socks. That's one of Oprah's Favorite Things. There's the bath collection. We love the waffle towels, but there's also premium plush bath towels. Everything that you see here can be had for 40% off with the offer code, juice box at checkout. Even the sheets. Now we use the bamboo sheets. You may choose different linens. I don't know what you're going to love when you get to cozy Earth, calm, but we sleep on bamboo sheets from cozy Earth. They are incredibly comfortable, and I bought them myself with my own money, using my own offer code. Juicebox at checkout, 40% off is what I saved you can as well at cozy earth.com,

Erika Forsyth, MFT, LMFT 13:25
and so, you know, starting with, yes, there is a real sense of responsibility in managing your child's blood sugars. That is true. And then I want to challenge what we're going to have the conversation about today is like, what's underneath that feeling of responsibility. So there's the reality, right? You don't want your child to go high and have long term complications. You don't want your child to go low for, you know, all of the obvious reasons, seizures, etc, and the fear around that. But what we're going to discuss is, you know, noticing the why, what is underneath the obvious of that responsibility, and so is it? Is it fear? Is it a fear that maybe you don't actually know? Are you, does your Do you? Does your child's pump have the right settings? Are you correcting, correcting at the appropriate rate? So do you need more education around it. Is it? Have you gone beyond that initial shock stage, or season of change stage, and you're still living in this fear that, gosh, no matter what we do, I'm not doing it right, and you're not quite sure what steps to take. So is the is fear driving and pushing that sense of responsibility? So exploring, yeah, what can you do with that fear? Is it? Is it more education around knowing how to help your child? I know these are like all easier said than done, but I think it is important to to name them. Is it guilt? Is guilt driving your decisions and actions? I know a lot of you. Parents I hear talk about whether they believe it or just feel it like what? How could I have prevented my child's diagnosis and then from that guilt, if you do feel like you could have, or wished or hoped you could have, are you now living in a state of I'm going to do everything I can to protect my child, and so I just need, I'm gonna, I feel so responsible for every action and reaction because of this guilt that's driving Yeah, your actions. Should I keep going or sorry? Do you want to? No,

Scott Benner 15:33
I think you should keep going. Honestly, I don't have a ton to say at the moment, and I just I appreciate how you're going through this. Okay?

Erika Forsyth, MFT, LMFT 15:40
Is it shame? And you know, Brene Brown, as we've talked shared before, she talks about the tapes that we have in our head that are just on replay. And are you living in a space where you're constantly hearing yourself say, as you already said, you know, I'm never good enough. I'm never gonna get this. And if that's kind of where you're living, what then you're gonna feel and take on that responsibility even more so, because either a you don't want it, you want to avoid feeling that shame. If it's like, oh, the blood sugar goes high, I'm never, I'm never gonna get this. I'm a terrible person or or the low, you know, and fearing something terrible and tragic happening to your child, which, again, is real, but is shame, and trying to either avoid that or is that driving that behavior? I think what we do get confused oftentimes when we talk about guilt versus shame, and guilt is can be kind of productive, right? It can say, Oh, oops, I made a mistake. I don't feel good about that, but I can change that, whereas shame is, I am the mistake. Yeah, and you know, the obvious example is, oh, we, we didn't Bolus, we didn't inject enough insulin, and now my, my child's 300 next time, we'll try giving it a little bit more or a little bit earlier, right? Versus we are never going to get this. I'm is this? This is and I'm causing serious damage to my child's body, and I'm a terrible parent, and stick and staying in that space is the shame. Do you think

Scott Benner 17:17
that having the autonomy to make changes to insulin alleviates that to some degree, because it occurs to me that if, if you're set up with poor settings, for example, or poor understanding of what you're doing from your doctor, you either see yourself as the agent of evil, right, like I'm doing the thing and it's wrong and it's my fault, or you see, people blame the doctor, well, the doctor is not Helping us. It's their fault. It's not my fault. And, you know, like, so you either put that shame on yourself or you blame, blame. Yeah, it's shame or blame, right? Like, I like that. I can't like this. Just it's, every time we get to the end, I'm like, oh, that's exactly what she said, But, but you seriously, like, when you look into the community, that's what you see, either people blaming themselves or blaming someone else, one of the other. So I'm either ashamed I can't figure this out, or I'm blaming this person. Neither of those things get you to the answer, because if the truth is the doctor's not helping you, you can blame yourself or blame them all you want. It's not going to change, as long as that's your physician and vice versa. If the doctor's giving you something that's actually actionable, that you just don't know how to put into play. The doctor is not going to change what they're telling you. This is the thing they know how to say so you get that's where people get stuck. And it occurs to me that I see people very frequently talk about I struggled for years until I realized I could change my basal if I wanted to. Like that. That one simple step seems to help people immensely. My daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod, it's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once, omnipod.com/juicebox, get a pump that you'll be happy with forever?

Erika Forsyth, MFT, LMFT 19:52
Yes, and there's, and it's whether it's a light bulb moment or a sense of, okay, I can't. Kind of agency or ownership over this in a safe way. You can't force that right. That is a journey that people are on independently, but that does feeling empowered to do that. You know, where I that comes from somewhere, yeah, to feel like, okay, I can do this. I can I can make this change, and we can do this slowly and safely or however. You know it feels appropriate.

Scott Benner 20:24
Can I ask a question when I hear people say, I just got done interviewing somebody an hour ago and said something that people say constantly, right? Like I wasn't taking good care of myself as an adult with type one. Then we had a baby, and I looked at the baby and I thought, I need to be around for the baby. And that seems very real to me, that people are able to do things make leaps for other people easier than they can for themselves. But then for the people who get stuck in this shame thing, as parents, as caregivers, that same connection seems to fight against them instead of be on their side. Does that make sense? You know what I'm saying? Like a

Erika Forsyth, MFT, LMFT 21:07
caregiver. Say that, say that last piece again. People,

Scott Benner 21:10
over and over again, will tell me that I didn't do a good job for a long time, but then I realized I could do it for someone else, because I want to get married, because I want to have a kid like I can. I can find the reason to get in there. But then you put a caregiver in that situation, they already have that reason, and yet that doesn't propel them. So what's the difference? Is it time like experience is that, like does the adult have 30 years of seeing it and ignoring it, and then they decide not to ignore it, whereas the caregiver doesn't see it, they're not ignoring anything. They just can't figure it out, but they still have the stress that the draw to do something for someone else. I hope that made sense,

Erika Forsyth, MFT, LMFT 21:47
so you're considering or wanting to explore. If the caregiver already has that motivation, like their child, they want to help their child stay healthy. I think they already have that, yeah, and so you're wondering if shame keeps them stuck. I'm

Scott Benner 22:06
almost wondering if a lack of the information. I mean, obviously that's the thing that's stopping them from making a better decision, right? Like, and, you know, but is, I'm saying it's interesting that the same lever that propels one person out of it is the lever that almost tortures the other person.

Erika Forsyth, MFT, LMFT 22:26
That makes sense, yes, yes, okay, okay, I hear that, okay. I don't

Scott Benner 22:29
know what to do with that. It just, it's very obvious as I'm watching like I hear people talk about this all the time. And I realized I have a kid now, and I want to be around for that kid, so I did this, and the next person is like, I care about this kid so much, and all I want to do is help them be healthy. And that's why I feel terrible, because I don't have so so the common denominator is, is information, good information,

Erika Forsyth, MFT, LMFT 22:55
good information, and also understanding which we're going to get into next is, what is that? What is that thought process? What thoughts are driving your feelings and behaviors? Tell me, so we you okay. So you know, why? Why is it important to understand the thoughts and feelings what you know, it's we just went over. What is driving that responsibility? Is it? Fear? Is it guilt? Is it shame? Is it, you know, lack of education, is it? Are you being Are you motivated by comparison also? Are you feeling like I have to keep my child's a 1c in this range and their blood sugar in this range, because that's what I see on Facebook, whatever, right? Like, what is driving that? But if we again, it might feel like a luxury to pause and be aware of your thoughts. It's important because we can't change our behaviors or our actions unless we are attuned and understand what's driving them and our thoughts. In cognitive behavioral therapy, if you were to look up the CBT triangle, and a lot of you are already well informed in this, but the CBT triangle is basically a triangle with arrows pointing in both directions, and basically it's describing how our thoughts impact and affect our feelings, or our emotions, which impact or affect our behaviors or actions. So we'll say, and oftentimes our thoughts are the drivers of how we feel and what we do. But it can go any which way, right? So you can open the door for somebody and and feel good about yourself and then have the thought, Oh, that was, that was kind of me. I'm a kind person. You can so that's right, that the action is driving that feeling or thought. You could think, I'm never good enough, and always feel like you're failing, and then your action is probably to. Avoid or not want to look or explore or understand what's happening, because it's all painful. Does that make sense? It does so again, I know it feels like, oh, just pay attention to what you're thinking. It's just that easy. I know it's a hard thing to do and it takes time and understanding. But if you are operating from this orientation that our thoughts do impact how we feel and what we do in any which order, also we can't change unless we have some awareness and understanding of what's driving that. So if, if you are living in a shame based mindset, and perhaps you grew up in that way that shame is going to make you change. Shame keeps us trapped and isolated and stuck. It does not lean itself into into being vulnerable and motivated for change. And so I want to kind of maybe try and go back to your question of like, what's that lever of change for the caregiver, if you're stuck and feeling like you're never gonna get it right, or that you are just having to constantly that this is that overwhelming feeling of responsibility for your child's highs and lows, and you're feeling like you're never gonna get it that There is. It's not an easy answer, right? But it is spending time understanding, noticing that. Why? Like, what is driving that constant thought in Should I keep going, Ken,

Scott Benner 26:34
but I keep thinking, don't want to, I don't want to waylay you, because I feel like I'm going to say something is going to take us down a road. It's okay. I keep thinking about like people who listen, know, I ask almost every person I interview, like, are there other auto immune issues in your family? What else is going on? Right? And anxiety, ADHD, that kind of stuff pops up a lot, depression, that kind of thing. So if auto immune is a trigger for anxiety. And trying to help somebody who has type one diabetes is a trigger for a caregiver. It's very possible that when we look back at people, we go, Oh, my God. Some people just like, handle this, and some people just can't, like, blah, blah, and we talk about it like personality or, you know, stick to itiveness. We've gone through the fallacy that some people are more resilient than others, like all this stuff I'm saying. What if there's auto immune through your family, you're not aware of it, and your auto immune is low level. You don't have anything diagnosable, but you are an anxious person, and so now you have this thing. Then your kid gets diagnosed, it gets ramped up, and then you get clicked into a loop that you have no there'll be no ability to break free of because it's a physical you're having a physical implication, and a psychological match is being thrown on it to some degree. So do you know what I mean? Like, so you have the external trigger, you have physical symptoms that could be coming from an autoimmune issue. And then here we go, like, it's and on top of all that, by the way, stress can be a trigger for anxiety, hormone imbalance, which we see a lot with people with autoimmune stuff, can be a trigger even, like, you know, I know there's not a ton of like, not a ton of like, research from the NIH about it, but like, you know, there's this gut brain access, access. So if you are having an autoimmune issue, your guts unbalanced. This could all, like, be impacting it. Then you're trying to cope with a chronic illness. It flares up your anxiety, the autoimmune issue keeps it going, and in the end, all you're doing is sitting in bed going, Why am I killing this kid? You know? And so, I mean, I like talking about it so that people can understand bigger picture, but I don't want them to like therapy would be a great idea. I'm not saying it wouldn't be. But I also think you should find out if you're having an auto immune response as well, because it could be. I mean, listen, I'm not a doctor, Eric, I think we've gone over that a number of times, but I don't know how many people I got to talk to who have auto immune in their life, who are also, like, closely related to an anxious person, or have anxiety themselves. So anyway, I just, I got to get that out, or I'm going to feel like it's stuck in my head the whole time. And I didn't mean,

Erika Forsyth, MFT, LMFT 29:24
good, yeah, that's a that is an excellent point, because then it's like, well, then you do, right? Like, that's so, yeah, complicated. And then you're in it. You're in facing a chronic illness where, you know what is anxiety, feeling like you're out of control and doing anything you can in your mind to get that semblance and sense of control right. And when you are trying to manage your child's diabetes and you're trying to be quote, in good control, which I know we steer away from that language, but that's what you're trying to do. But,

Scott Benner 29:56
and we steer away from that language because some people have such. Hard intersection with it. But for the people who aren't anxious, they hear that, and they go, okay, marching orders, I know what to do. Bang, bang. And then they go, get it done. Like, so if it's if it's a physical limitation, and then you get thrown into it, but you feel like it's just a personal failure. You don't even it would be like, if you felt like having cancer was a personal failure, and somehow no one knew to tell you, No, that's not true. That's how this all feels to me. If that makes sense, I'm saying if that makes sense too much today, but

Erika Forsyth, MFT, LMFT 30:34
because this is it's hard. It's hard because there's no, we can't say, go do this and this, it's going to fix it. This is a conversation of bringing awareness to a really challenging issue of a caregiver trying to keep your child in good health. But are you noticing that overwhelming sense of responsibility that may be more than you can handle? Yeah, and manage that. It's not sustainable

Scott Benner 30:59
if you're an anxious person who didn't get good direction from a doctor, and you're floundering, and you have an autoimmune issue. On top of all that, I might as well take somebody four feet tall and tell them to go out there and block shack. You know what I mean? Like, it's just you. I don't know how you're supposed to accomplish that. You don't have any of the tools, and you have a number of things going against you while you're doing it.

Speaker 1 31:22
That's all, yes, yeah, that's, that's all.

Scott Benner 31:26
You always make me feel like, hopeful and beaten at the same time. I'm like, Look, we're shining a light on this thing that they can't do anything about, like, but you can do something about it, right? You can't.

Erika Forsyth, MFT, LMFT 31:38
You can't. So the as we're talking, you know, my hope is that you are able to just, even if it's a few minutes during this episode, kind of checking in with yourself. You know, we all again, going from from a cognitive behavioral therapy orientation. We all have these core beliefs that we're living from and out of that often are originated and stemmed from our childhood. And core beliefs lead to automatic thoughts, and those can be positive, they can be negative. You can have a blend, right? So your a core belief could be I am valued or valuable, and and your automatic thoughts stem from that in the name, since we're talking a lot about shame today, if you have a core belief that you're never good enough or not good enough, then your automatic thought would be obviously more negative when You see your child's blood sugar going up that I am I'm failing. I'm never going to get this. I'm causing serious damage, and that's coming from your core belief system. And it's hard and takes time to understand that. But I think as human beings, we're going to have those moments, right? Like this is normal journey of growth and learning and disappointment and grief and loss, all the things that we've talked about in all of our previous episodes. But we're wanting to encourage to note just just like we want to notice our patterns and our blood sugars, notice the patterns of our thinking. Again, that takes time and energy, which I know is hard to do, but it is doing Yes, yes, yes. If

Scott Benner 33:25
you, if you have the time to so it is like diabetes, if you have the time to put the focus on it, and you get good information, like you're sharing here, you maybe can step back, see the bigger picture, and help yourself through it.

Erika Forsyth, MFT, LMFT 33:36
Yes. I mean, yes. And the challenge is, obviously we don't have our clarity reports, or any reports to look at our trends. Right to say, Oh, I'm going high after every I'm going, Yeah, I'm going anxious every morning. So yes, it takes another step of analysis and pause. But you are, you are worth that. You know you are worth that as a human being, as the caregiver, and you are valuable,

Scott Benner 34:04
right? And for the people you're trying to help too, right? It's worth it. It's worth the effort. Yes,

Erika Forsyth, MFT, LMFT 34:09
yes.

Scott Benner 34:10
So what are the last

Erika Forsyth, MFT, LMFT 34:11
last tool? Last Tool here, in terms of, you know, the self we're kind of self talk tips. To get to that place, you have to have this awareness of what are you telling yourself. And so when you notice, as I think I've talked about this before here, like noticing that that mean girl voice or that mean guy voice in your head, that you have to first listen, understand it, and then you notice it when it happens. And for some people, they can quickly say, oh, yeah, I hear that all day long. Or oh, I only hear that when this happens. And naming it. This is another CBT tool, name it, call it Teddy, oh, you

Scott Benner 34:53
can give the voice a name, yes.

Erika Forsyth, MFT, LMFT 34:58
Okay, good. Do you. To share it? No, I

Scott Benner 35:00
can't, because that person is listening and I hate them. Now, by the way, 15 different crazy people think I just thought of their name. It's not, you go ahead,

Erika Forsyth, MFT, LMFT 35:12
you know, Brene Brown calls it the Kerr gremlins. Sometimes people call it a color monster, etc. And naming it, it sounds silly, but in that process, you are telling your mind that you are separate from those thoughts, like when we hear when we feel like I'm never good enough, I'm I'm never going to figure this out. I'm a terrible person. That's when in Acceptance and Commitment Therapy, they talk about that's thought fusion, like that thought is a part of you. And what we want to do is do like this, thought diffusion. And so by naming it, you're telling your brain, oh, this is, this is not me. This is, this is my old past. This is my history. This is something not this is not nice, right? So you're naming it, you're acknowledging it. Okay, monster, I know you're trying to tell me that I'm not good enough, but I in cognitive behavioral therapy, they you can kind of tell it to be quiet, to tell it to shut up. You can tell it to I'm turning the volume down. Some people don't feel comfortable with that, because it feels more like combative and that creates more conflict in your mind, in Acceptance and Commitment Therapy, you can name it, acknowledge it, and say, okay, monster, I see you, and I know you're trying to tell me I'm not good enough, but that actually you're kind of just you're sitting with it and it's there, and you're separating yourself from it, which, by the way, also interrupts the pattern, right? Like when you're you're spinning and spiraling. It feels like you can't control your thoughts. So with this tool, by naming it, talking to it, acknowledging it, you're interrupting that thought pattern, and then you're saying, Okay, actually the truth is and replace it with a truth that feels it might feel not 100% accurate in the moment, but that's where you want to get to. Like I'm doing the best I can, I'm learning. I'm taking it one day at a time, whatever truth statement that feels easy enough to remember and say, because you're wanting to interrupt that pattern of your failure, you're never going to get it. You're, you're, you're not good enough.

Scott Benner 37:21
I think you just made me realize that Eminem went to therapy. Because, you know that song, the monster with Rihanna. I'm friends with the monster that's under my bed. Get along with the voices inside of my I'm like, Oh, I think he might have went to therapy and then wrote

Erika Forsyth, MFT, LMFT 37:33
that. Yeah, you might have. That was good. That was our podcast, not

Scott Benner 37:37
big enough to reach Eminem, but, but I definitely like, that's what I thought. Like, oh, he sounds in touch with that idea that you just said, Okay, maybe you guys could just listen to that song and skip therapy. Yeah, I don't think it works that way. Can you imagine? Or could be out of a job. Oh, we've just send songs to people, if people have been in therapy already.

Erika Forsyth, MFT, LMFT 37:59
That is good. I've never thought about that song, but yes, that does feel like that.

Scott Benner 38:03
It just felt like that's what you were describing, is that somebody who, you know, found a way to separate the voice from themselves. That's all anyway, I could be completely wrong. Somebody's gonna write and be like, that's about heroin. And

Erika Forsyth, MFT, LMFT 38:19
I'll be like, oh never. Gosh, yes. I mean this again. These are, I know it's easy, and we're kind of laughing that this is, it is a it is a process and a journey of recognizing what tapes are running in your head and how much is that contributing to, in this particular theme, the responsibility of the highs and lows of your child's blood sugar? Yeah,

Scott Benner 38:42
I would like to thank you for believing in how I present stuff on the podcast enough to come on and talk about super serious stuff while I say dumb in between, because, because I do really think that this is another one of these things that, if it wasn't Amy, you know, you can think about any number ways you want, like, presented in a relatable way, whatever. I just don't think it's something people would hammer through. You know what I mean? Like, if you just came on here and were like, and you read that stuff out loud, people would be like, oh, oh, geez. And not that it wouldn't be incredibly valuable for them. I just think people have trouble, like, you know, sitting and hearing that stuff and taking it in that way. So I just, and, plus, you're teaching me as I'm talking, like, you know, as you're speaking, I'm like, Oh, that makes sense. This makes sense. I even saw at one point, like, we did that, 54321, grounding technique. And I thought, Oh, that would work here. Yes. Like, and you talked a little bit about, Gosh, how did you put it, like, core beliefs, and then, and I thought of that from like, other episodes, and I was like, I'm gonna be by the time Eric and I get done, I'm gonna be healthy, and hopefully other people listening could be as well. You know, yes, it's tough to think that 38 year old, you could be feeling like I can't do this because of something that happened an eight year old, you you know. But if. Very likely that those that self talk you have is rooted in something you don't even remember anymore. You know, yes, well, that you don't consciously remember anymore.

Erika Forsyth, MFT, LMFT 40:09
Yes, it is. It is powerful to to think that after you

Scott Benner 40:14
get done talking and I realize I'm following you, I'm proud of myself again, but, but I'm also proud of you because of the way you the way you lay it out. It just you're explaining and then giving me time to go through it, and I'm hoping that's translating the people listening, which I think it is. I just don't think it's a thing. Like, if I was actually in therapy right now, I'd be so busy spilling my guts. I don't know if I'd be able to, like, hear what you were saying. Like, I like this format for that,

Erika Forsyth, MFT, LMFT 40:45
you know, yes, yeah, yes. Well, it's, it's a journey, but thank you. No, it's

Scott Benner 40:50
a journey. Yeah, it's, certainly is. I talked to a guy the other day about, like, he's like, 70, talking about his children in their 30s, and they're coming back and asking questions still. And I thought that's always gonna happen. I thought there was a break coming at some point. There's not. And then it really made me think, like, you know, otherwise, just like well adjusted people and doing okay in the world and everything. And if you looked at them from a distance, you'd say, these people got it together, you know, but they still need help. So there's nothing wrong with asking for help, I guess is what I'm getting. That's right, yeah, that's right. Are we done? Did we do it? We're

Erika Forsyth, MFT, LMFT 41:25
done. We're paused. Yes, we're done. For episode two, all right, come back

Scott Benner 41:29
for episode three. How many episodes are there going to be six? Six.

When this started, Erica said, I don't know. We could probably do this in like three episodes. And I was like, not. If I start talking in the middle, we're not going to be able to. I appreciate this very much. Thank you.

Erika Forsyth, MFT, LMFT 41:42
Thank you.

Scott Benner 41:48
A huge thanks to Omnipod, not just my longest sponsor, but my first one. Omnipod.com/juicebox if you love the podcast and you love tubeless insulin pumps, this link is for you omnipod.com/juice box. I want to thank the ever since 365 CGM and remind you that you may be eligible to experience the ever since 365 CGM system for as low as $199 for a full year, you can visit ever since cgm.com/juice box to find out more details and learn about the eligibility. Huge thanks to cozy Earth for sponsoring this episode of The Juicebox podcast. Cozy earth.com use the offer code juice box at checkout to save 40% off of your entire order. If you're newly diagnosed, check out the bold beginnings series. Find it at Juicebox podcast.com up in the menu in the feature tab of the private Facebook group, or go into the audio app you're listening in right now and search for Juicebox podcast. Bold beginnings. Juicebox is one word. Juicebox podcast, bold beginnings. This series is perfect for newly diagnosed people. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes. I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? The episode you just heard was professionally edited by wrong way, recording, wrong way, recording.com, you.


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#1356 Land of Many Colors

Scott Benner

Akshara uses a GLP pill and has a crazy T1 diagnosis story.

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

Scott Benner 0:00
Hello friends, and welcome back to the Juicebox podcast.

My guest today has had diabetes type one for three years. She's using robust, which is a GLP and a pill, and she talks a lot about food and her diagnosis in this episode. Oh, and they thought she didn't. Oh, geez, that's interesting. I'm sorry. I'm looking at my own notes. They didn't think she was going to live at diagnosis, and they actually sent her family out into the community to look for medication. This is a story that's really different, interesting. You should check it out. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box.

This episode of The Juicebox podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom. G7 dexcom.com/juice box. Get started today using this link, and you'll not only be doing something great for yourself, you'll be supporting the Juicebox podcast. US med is sponsoring this episode of The Juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juice box, or call 888-721-1514, use the link or the number. Get your free benefits. Check and get started today with us. Med. This show is sponsored today by the glucagon that my daughter carries, gvoke hypo pen. Find out more at gvoke glucagon, com, forward slash Juicebox.

Akshira 2:23
Uh, hi. My name is akshira. I am 29 years old, and I've been diagnosed with type one for the last three years. So I recently diagnosed. I'm learning new things every day. And I just wanted to come on and say hi, and wanted to share my story. Oh,

Scott Benner 2:39
I'm great. I'm I'm excited to have you. Thank you. So three, three years with diabetes. How old are you?

Akshira 2:44
I'm 2929

Scott Benner 2:47
and you, you just said I'm still learning. That's interesting. So has it been a consistent learning process over three years, or have you suddenly found different information and you're absorbing it now?

Akshira 2:59
Uh, no, I think it's been consistent learning through these three years also, because when I got diagnosed, I was, I think there were lot of things that was happening at that time in my life, just, you know, when I got diagnosed, and I think it's just been the last year that I've really focused on, you know, my diabetes, and I've come to accept the fact that I have, I live with it. I think the first two years, there was a lot of denial, and, you know, so that's I've been learning how to control, you know, my sugar levels, and, you know, just deal with it more consistently in the last year. What is denial look like, just not accepting the fact that I have diabetes, like, just thinking that's just something that's momentary, or it's just for a short period of time, and maybe it'll go away, you know? And, yeah,

Scott Benner 3:52
so while you're in that feeling you're not putting your full effort into it, because, you know what I mean, like, not I understand the Lego hopefully this will, like, maybe they're wrong, maybe it'll go away, like, that kind of thing. I understand all that. But what happens to you while you're doing that? Are you just sort of half heartedly taking care of it, or are you taking care of it very earnestly, and then suddenly you accept the fact that it's not going away?

Akshira 4:15
No, I yeah, I think it's the latter. It's like, I'm half heartedly taking care of it, like, you know, it's not that I would ignore my my numbers. I would not take the insulin, but it's more. I mean, I would just do the basic of what is required, right? Like, if I maybe I'll just take, like, five, six units, because I know that's the minimum that I would need, you know, to get through a meal or whatever, and I know that I have to take my basal at a certain time of day, and I would do that. But I was not correcting. I was not, you know, trying to understand why certain foods impacted my sugar levels the way it did. So I was just trying to, you know, just keep. My head up, but

Scott Benner 5:01
you weren't learning or digging deeper or anything like

Akshira 5:04
that. No, nothing.

Scott Benner 5:06
How did you get past the idea that hopefully this will just go away? Was there just time that did it? Was it a conversation you had a moment?

Akshira 5:16
It was time, definitely. And so I got diagnosed during COVID. So it was in I when I signed from India. So we had a second wave of COVID during 2021, I remember that, yeah, so where it was, like things were really intense. And, you know, there was, there was a scarcity of beds in hospitals, and, you know, it was a really difficult time getting that, you know, getting admitted. And that's when I got diagnosed. I was in the I got COVID, and then in DK, and that's how I came to, I came to this new chapter of my life. So the first two years, I was dealing with a lot of after effects of COVID, like, you know, still trying to come back to my strong like, like my old self, like, gaining strength. And, you know, I had lost my voice. I was doing vocal cord therapy and all of that. Lot a lot of other stuff was happening.

Scott Benner 6:08
Yeah, did you have or do you have long COVID symptoms?

Akshira 6:12
I don't have any COVID symptoms now, right? But I think for for from the year that I would diagnose, I think for a year from then I had a lot of COVID symptoms. So, yeah, so I think the I think after that, like once you get back to routine, and get back to your life, and, you know, start doing everyday things, and, you know, I then I had, like, a new doctor, like a, like an endocrinologist, and then that's when I really learned what this means and why I need to take care of it, and I was, you know, paying more attention. So I think it was just time that kind of did it, and that's, that's how I came to term with the fact that, you know, it's, it's more real, and it's not gonna go away.

Scott Benner 6:54
Not gonna go away. Are you in a big city in India? Or where are you?

Akshira 6:57
Yes, I am in a big city. Yeah. What was that

Scott Benner 7:01
intake like through the hospital? Did they give you any technology? Is the technology wildly different there than it is here, that kind of stuff. If you take insulin or so Fauci, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G VO, hypo pin. My daughter carries gevoc hypopne everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that. I trust low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, gevoc hypopne can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use jivo kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulin OMA, visit gvoke. Glucagon.com/risk, for safety information. Today's episode of the podcast is sponsored by Dexcom, and I'd like to take this opportunity to tell you a little bit about the continuous glucose monitor that my daughter wears, the Dexcom g7 the Dexcom g7 is small, it is accurate, and it is easy to use and wear. Arden has been wearing a Dexcom g7 since almost day one of when they came out, and she's having a fantastic experience with it. We love the g6 but man, is the g7 small, the profile so much closer to your body, the weight, you can't really feel it. And that's coming from me, and I've worn one I've worn a g6 I've worn a g7 I found both of the experiences to be lovely, but my gosh, is that g7 tiny? And the accuracy has been fantastic. Arden's a one. Cs are right where we expect them to be, and we actually use the Dexcom clarity app to keep track of those things. That app is built right in to Arden's Dexcom g7 app on her iPhone. Oh, did you not know about that? You can use an iPhone or an Android device to see your Dexcom data. If you have a compatible phone, your Dexcom goes right to the Dexcom app. You don't have to carry the receiver, but if you don't want to use the phone, that's fine use the Dexcom receiver. It's up to you. Choice is yours with Dexcom, dexcom.com/juicebox, dexcom.com/juicebox,

Akshira 9:42
I don't remember much from when I was actually diagnosed, like, I don't have any memory of of those, of that, of those few days, but I was on MDI. They gave me like a sliding scale, like I need to take some eight units during breakfast. I. And some six units during lunch, sorry, during dinner. And I need to take some 12 units, which was my basal, so that that's what I was doing for, I think, a year. And then some friend of mine told me to this other doctor was, like, really popular in the city that I live in, and he and they have, like, this really big diabetes hospital, and then, so when I went there, that's when, this was just last year. So when I went there, that's when, you know, my I was taught a carb counting. I was taught what an insulin to carb ratio is. I was given a CGM. And I think since the last about eight, nine months, I've been on a pump as well. Okay, which pump I use? The ipso med pump, Ipsum,

Scott Benner 10:49
okay, yeah, so right now, Ipsum, Ed, pump, yeah, CGM,

Akshira 10:55
freestyle, libre, libre, libre one. That's what you get here in India.

Scott Benner 11:01
They're all, yeah, there's no other one available right now.

Akshira 11:04
No, no.

Scott Benner 11:05
Does that come through a healthcare system?

Akshira 11:08
I know you buy it with cash. Cash, okay, yeah.

Scott Benner 11:11
Can you tell me? Would you mind tell me what it costs and how that translates to American money.

Akshira 11:15
It costs around 5000 rupees, which is 72 which is about $70 for one, for one, for one sensor, which would last you 14 days.

Scott Benner 11:28
What is that like, based on your income? Is that? Is that a heavy lift for you, though? Yeah,

Akshira 11:34
so, so if you do, if you do, multiplied by two, right? Like you would assume, in a month, I would need about two sensors. So that's like 10,000 rupees, which is a good portion of money for someone who earns, you know, like a who lives in a middle class lifestyle, or who has a nine to five job, that would that's, that's a good chunk of money,

Scott Benner 11:56
hold that amount up to me against, like, rent or food or something like that. Like, what? Yeah,

Akshira 12:03
okay, so in the city that I live, which is like a tier two city or almost a tier one city, doesn't matter, so it would be 1/3 of your of the rent that I pay in a month, and it would be like almost a month's worth groceries. And it could be like a month's worth of gas or pet like in India, we we say petrol, right? So it'll be a month's worth of petrol, one,

Scott Benner 12:24
libre sensor, uh, truly, two is the equivalent to a month's worth of of gas, or a third of your a third of your more of your rent.

Speaker 1 12:34
Yep. Wow, that's crazy, yeah. Oh,

Scott Benner 12:38
so that's like, so if you this is crazy in America, but you could pay $2,000 for an apartment American, no problem in some places. And that's like saying that the two libre sensors is like 800 bucks. Yeah, that's great. That's nuts. Okay, wow, all right, but you're doing it because, why? Because you like not having money or because you find it that necessary?

Akshira 13:05
No, obviously I like having money inspires me to work harder so that I have more money, so that I can afford the diabetes technology. And, yeah, of course the technology is important. And I think, yeah, I think I'm a I'm a lazy person, I wouldn't do too many, you know, finger sticks if I'm given the choice. So I think having the CGM makes it easier. You

Scott Benner 13:28
think not wanting to do finger sticks is lazy? I don't know. I don't think that's lazy. I think that might be smart, you know, but, but this is crazy, so, but are you, I'm sorry. Are you married? Yes, I am You are okay. And do you have kids? No, are you planning on, planning on kids? No, okay. How about in your family? Is there any other type one in your family?

Akshira 13:53
No, there's no type one in my family, but there are couple of aunts who have hypothyroidism, yeah, but there's no, no one else that I know of who has any other auto immune, like celiac or type one or anything else.

Scott Benner 14:08
Getting away from auto immune for a second. Do you have much type two in your family?

Akshira 14:12
Yeah, yeah, like some of my grandfather, I mean India. I mean a lot of people in India have type two diabetes because of our eating habits in our lifestyle and things like that. So yeah, not immediate family members, but yeah, extended family members do have step two diabetes. Yeah.

Scott Benner 14:28
And that brings up a good question, like, well, first of all, did you adjust your eating? And if you didn't, would you even be able to living in India to get away from stuff like that?

Akshira 14:38
Definitely, yes, you can adjust your eating. You do get a lot of so you do get a lot of variety of foods, like, you know, which are not very carb heavy. It's just that the most affordable options tend to be white rice and, you know, some vegetables which are more heavy in carbs than other nutrients. But it's. Definitely doable. I go through phases where I'm suddenly like, Okay, I'm going to do low carb and I'm not going to eat any carb, and I do that for couple of months and and up sometime and just totally give up. And I'm like, Okay, I just want to eat my traditional food, which is very carb heavy. I would like to believe that I that I have a very balanced way when it comes to food, I think it tends to lean a little more on the carb heavy side.

Scott Benner 15:26
So let me ask you this, are you a vegetarian?

Akshira 15:30
Yes, I am a vegetarian.

Scott Benner 15:32
And so that's that makes it harder, right? Because you all the meat, you know, that would have very low or no carbs, and it isn't available to you, okay, yeah, yeah. And so you have to go maybe more towards vegetables if you're going to do that, I say, yeah, yeah. Tell people what is a classic kind of week of Indian eating look like, like in a home, like, you know what I mean? Like, what are some staple foods?

Akshira 15:58
So a lot of our food are very lentil based. So we have something called dal, which is like a lentil curry, basically. So, so a lot of your food types, like, or so, a lot of it is either like a roti or a chapati, which is like, which is like kind of a bread that's made with a wheat, whole week. Okay, so you have that with some, you know, some curry, which would either be like a lentil based curry, or it would be some vegetable based curry, or you would have that curry with rice, with white rice, primarily. So I am traditionally from the southern part of India, where rice is more prominent, white rice is more prominent, and we have that with different kind of lentil based curries and with one vegetable, one or two vegetables, right? So it would be like a fermentation combination, where your white rice or your whole wheat chapatis or rotis or, you know, non bread, as they say, you know, those kind of things with different curries and different.

Scott Benner 17:03
I was at a friend's house recently. It kind of like, we just dropped in, and she's like, you know, we have, I don't know what it was called, but she's like, here you want some food. And it's like, kind of like it felt like a flower pocket or dough, and inside of it was, like, rice and peas and some other stuff. And it was, I think it was fried maybe. And, yeah, was

Akshira 17:22
it like a samosa? Did she say, I

Scott Benner 17:24
don't remember what she said it was. I remember, like, eating it and thinking, like, wow, this is, this is a lot of carbs. And, like, just the thing that was just kind of sitting around to snack on or grab, you know, yeah,

Akshira 17:33
yeah, yeah. Did you go during tea time, during the afternoon time? No,

Scott Benner 17:37
it was in the evening. We were stopping by to my son could meet with her husband a little bit about something, okay? Yeah. She's like, Oh, look what we have. And I was like, Oh, great. And I was like, I don't know what this is, yeah,

Akshira 17:47
no. So a lot of our a lot of our snack time foods are all fried foods, which is more easily accessible. So you are like, like, the one that you said that's, it's usually, I think you're referring to a samosa, which has, like a potatoes and peas inside, like a pastry, kind of affiliate, like an outer shell. That's like deep fried. Yes, that's like a very common snack time, tea time, kind of a food that you have with Chai.

Scott Benner 18:13
How do you how do you Bolus for that? Y'all

Akshira 18:16
get as good as mine.

Scott Benner 18:20
What have you been able to accomplish with your your outcomes and the food choices that you have? Like, where's your a 1c at? And what are your goals?

Akshira 18:28
My a 1c is definitely not the best. The most recent one that I had was a 7.2 and that's the lowest a 1c that I've had in the last three years that I've that I've been diagnosed, okay, so, yeah, I think I'm really moving towards, you know, like, I think for the for this year, my goal is to be in the low sixes, and then I would try, I would want to be closer to the five as time goes on. But, yeah, so I try to eat what is, what is more easily. Like, it's something that I can make more easily, so that, you know, it's, if it's too complicated, I'm not going to make it, and then I'm not going to eat it. So I try to balance that. And I've also started the, I've recently started taking ribs, which is like a pill. Oh, I know, sure. GLP, medication. Yeah. So that has helped a lot in terms of my insulin sensitivity and just the amount of insulin that I'm using on on a daily basis. It's just been a month since I've been on that medication, but that's helped a lot. Yeah, so tell me about

Scott Benner 19:35
that a little bit. Is that a pill, right? Is it daily? Yeah, yeah.

Akshira 19:40
It's, it's once it's, it's something that you take every day, okay, in the first thing in the morning, and you're not supposed to eat or drink anything half an hour after your at least for half an hour after you've taken that the pill. And then you go, go on about your day as usual.

Scott Benner 19:54
Are you on a seven or a 14 milligram pill?

Akshira 19:57
So I'm currently on a seven. I. G milligram pill. I started off with three mg, but now I'm on 17. Sorry, seven mg. But from next week, I will move to 14 mg.

Scott Benner 20:08
They'll move you up gastro stomach. Any issues from it? What did you get from it?

Akshira 20:13
Yeah, I think the first few weeks was a little difficult. I mean, I've heard some of your stories where you said that you feel the foot sits in your feels like it's up here in your chest, yeah. So, I mean, I did have those sensations in the beginning, but I think otherwise, it's been okay. There was just one time where I had, like, instant noodles and I couldn't keep it in. I threw up, and I've never I've not touched instant noodles since then, like, it haunts me now to even think about it, just like

Scott Benner 20:44
those, like pre made noodles, you put hot water in them, and, yeah, that you couldn't handle, but yeah, had you not thrown up? You think you could do it now that you've been on it longer? I

Akshira 20:53
don't want to think that. And I think more importantly, I don't feel that. I don't crave for for that kind of food, like, I don't feel like eating it, you know? I mean, I could take maybe two bites and I'm done, like, I don't want to eat more of that. So it's really working. It's working for you? Yeah? Yes, yes. I'm also some Sorry, I just want to say one thing, yeah. I'm also somebody who's always thinking about food, like, I'd wake up in the morning, think What's for breakfast? And, you know, I would when I'm eating breakfast, I think, what do I have for lunch? Like, that's how my brain works. And I can tell you, I've not thought about food in the last one month at all, and I've gone days having just one meal, and I'm totally okay. Have you lost weight? I've not lost weight. Maybe, like, like, one kg, okay, here and there, but it's helped a lot with just how much my insulin needs have gone down. It's gone yeah, by 25, 30% like, my basal has gone down like crazy, and even my ISF, like, my sensitivity has improved quite a bit too. So in that way, it's really helped. That's

Scott Benner 21:58
excellent. Good for you. I'm sure over time it'll I mean, do you need it or want it to impact your weight? Or maybe you don't. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, us, med.com/juicebox, or call 888-721-1514, US med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us med carries everything from insulin pumps and diabetes testing supplies to the latest CGM, like the libre three and Dexcom g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better business Bureau at US med.com/juicebox, or just call them at 88872115141, 7211514, get started right now, and you'll be getting your supplies the same way we do. I

Akshira 23:28
do. I would like to, I initially read a lot about how it does, you know, affect we I was, I was earlier, wanting to take it on me for a week. I didn't even care about the all the side effects would have, like, good side effects on, you know, the insulin, yeah, on the insulin aspect. But I'm so glad, like, now I don't care about the weight, as long as, you know, my insulin is affecting much better and all of that stuff. Has

Scott Benner 23:53
it impacted your spikes at meals, yeah, it has, right? Yeah,

Akshira 23:58
it has earlier, just to be like a mountain, you know, like, up down, up down. Right now it's more gradual. And it was already gradual, you know, listening to you guys in your podcast, and thank you so much for that, but I think it's much more smoother. The curve is more smoother now that I take GLP medication right

Scott Benner 24:18
before we recorded, to get we started recording. I actually sat in on Arden's doctor's appointment. Arden just got back from college, so she had a doctor's appointment today that was just virtual, and we went over her GLP, you know, her insulin, all of her stuff. Obviously, we're going to try to cut her GLP dose back, because she is having trouble being hungry and and she's like, you know, she's lost too much weight at this point. So she's, you know, we're, we're like, well, we want to get this GLP down to where it will help her with her diabetes, help with the PCOS stuff, but not keep her from eating. You know what I mean. So, like, that's the spot she's in right now. The doctor asked her to, like, you know, she's like, let's try to put. Put like, seven pounds on, you know, kind of as healthy as possible, like, put, put seven pounds on, so that's what we're working on right now. What it's done to our blood sugar control is insane, you know. So, like, I mean, I actually showed this to the doctor, but I have it here. I'll show it to you as well. Now, this is obviously injected benjano. This is her last 24 hours. And that's a 70 to 120 blood sugar. Those two excursions up went to 160 and that was it. It's just crazy, you know, like, I mean, for people who can't see, it's super stable for, I'd say, 20 of the 24 hours between 80 and 100 and, you know, pops up to 120 once or twice, pops to 160 once or twice. It's probably looks better than most people's. Do you know, yeah, the glps are crazy, but I'm, I'm excited that the pill is working for you. Is that the way they go there in India, with a robust or do you see people injecting glps as well?

Akshira 25:59
There are people who are injecting, who take ozempic, or I think ozempic is available in India, but it's more type two medication, and my doctor just couldn't give it to me. He said, I wouldn't. I don't want to prescribe it for you, so I take the pill

Scott Benner 26:16
every day. If he did, I don't know how your like coverage works. If he did prescribe it for you? Would it be paid for? So

Akshira 26:23
none of this is covered by anything I'm paying out of cash, out of my pocket, for all of this. So it's my GLP, my so the GLP medication is really expensive too. Yeah. The rival says, yeah. So the pill, the pill that I take, so it's once you need to take 30 pills, right for a month. So it costs the same as much as the sensors do. So it's like 10,000 rupees a month. Is what the pill also cost. Wow, for a month, it's very expensive. Well,

Scott Benner 26:51
no wonder you don't want to have kids. You already have one. Your Diabetes is a kid. Yeah, your diabetes might need to go to college one day, and you're going to have to

Akshira 27:00
save up, and if I'm gonna live to like, whatever exactly, I need to have so much money in my account that I have to do this whatever. So

Scott Benner 27:12
explain to me, so there's no like, you have a job. You work, yeah, okay, and there's no like, here in America, you might get a job, and then your job might offer you health coverage. You pay for it. And does that exist there or no? Yeah,

Akshira 27:26
so insurance does exist, but it's it only covers hospitalization. So if you are admitted in hospital for something, you need to go through a procedure, or you have some operation, blah, blah, blah, all of that stuff is covered under insurance. You don't have to pay for all of that stuff. But your treatment so you so you have a disease and you're treating it by by any means that is not covered by insurance, no

Scott Benner 27:52
matter what. Like diabetes,

Akshira 27:55
it could be anything. Yeah, it could be heart disease, it could be diabetes, could be whatever. It's not covered.

Scott Benner 27:59
That's it. I see, wow. Well, so then everybody growing up in India is thinking about that. It could affect everybody at some point. And with the type two population, the way it is, which is massive, right? I'm not wrong about that, yeah, yes, yeah, yeah.

Akshira 28:14
But so for type two, it's they usually prescribe me for men, like 90% of people who are diagnosed with type two is prescribed Metformin, and metformin is really affordable. It's very easily available, and it's not that's not a very expensive they've

Scott Benner 28:30
been making it forever. It's basically free. Yeah, yeah, here too. It's not expensive either, yeah. Okay, so in your note, you said that you'd like to talk about dealing with some depression around your diagnosis. Can you tell me about that?

Akshira 28:46
Yeah, so, you know, just referring back to what I said, like, I was diagnosed during COVID, and was so crazy. It was so intense, and I don't have any memory of it, because I was, you know, in the ICU, and I was admitted for like, couple of days, maybe unconscious.

Scott Benner 29:03
You were in DK, unconscious. Oh my gosh, did you almost die?

Akshira 29:06
Yeah, I almost died. So I had COVID. I got COVID here in India, when they, when they do your COVID test, they give you, like, a number that you know is representative of how high or low your infection is in the body. Higher the number the most severe is your infection. So I think the highest it goes is about 20 or something. And mine was like 18. So so the level of COVID, or whatever, the infection that I had, is

Scott Benner 29:37
that the viral load, maybe? Is that how they talk about that, okay, yeah,

Akshira 29:41
something like that. So that was, like, really high. And I remember when I got COVID, I saw the the report, and I was okay, you know, I was fine. I just had some fatigue, and I was having some body pain. But apart from that, I was okay. But two days after that, I was just constant. Throwing up. I couldn't keep a bite of food down, and like, one week later, I wake up in the hospital in the ICU. I don't know what happened on those five, seven days. I have no How

Scott Benner 30:13
did your husband like describe it to you later?

Akshira 30:15
Yeah, I think more. So my parents also live very close by me i At that time they did. So, you know, they were the ones who were really taking care of me. My husband also got COVID, subsequently, like, couple of days after I got it, so they were like, nobody could come with me. They have like these crazy stories about how they make some 100 calls in a day to get a hospital, to get a bed just so that, with a bed with an oxygen cylinder so that, you know, I needed to be on o2 so, you know, they they did like, a, like, a ICU bed, basically. So they were, like, making so many calls and pulling random people from their contact list and trying to find some hospital bed somewhere. And I think, after like, couple of hours, like, I think towards the end of that day where I went unconscious. I think that's when they found a hospital bed and they admitted me, and they couldn't they were they used to get, like, a whatsapp video call from my from the doctor who was taking care of me in the ICU, just to give updates about how my health was on that particular day. And you know, they would always say things like, Oh, her, you know, her organs are feeling or, you know, we're not able to revive her, or, you know, it's going to be really messy we need. And they would call, they would ask for a very specific type of medication, which was a treatment for COVID. At that point in time, at least here in India, it was called Italy, zumab, or something like that, some steroid medication. I think, wow. So, yeah, so they would ask for that, and my parents were, you know, trying to source that medication again, from so many different like, they put up Twitter posts, on Twitter, on Facebook, and, you know, everywhere else, trying to find that vial of medication. How common

Scott Benner 32:00
is that like? So you're in a hospital dying, and your parents are on social media trying to find medication for you?

Akshira 32:06
Yeah, yeah, because the hospitals couldn't store it, there was such a dire shortage of that medication. And you know, it was such a difficult time for them, because they were really pulling the weight for the family and for me. So my husband was not feeling well. He was he was also subsequently admitted in some other hospital in another part of the city, right? So it was my parents and my sister, the three of them who were, you know, trying to do a lot of sourcing of this medication, and the and the and the doctors told my parents that you try if you can get this medication, because we are not able to get

Scott Benner 32:44
it. Is that common in India, or was it just specific around COVID? No, just

Akshira 32:49
around COVID. It was just around that time because it was so intense, the like the second wave that we had, was so crazy. You guys

Scott Benner 32:56
got crushed the second time around, I remember, yeah,

Akshira 33:00
from from April 2021, till, I think October of that year it was that. That's when I think the second wave was and it was so crazy. It was really intense. And the India,

Scott Benner 33:11
India population is pretty, pretty equal to China, like you guys almost have, like, 1.5 billion people there, right? Yeah, yeah, yes, yes, yeah. And in a much smaller area. I mean, we have maybe three 30 million people and, yeah, geez, that's a lot more. So that COVID must have spread like crazy, right? Yes,

Akshira 33:33
it did also, because after the initial wave of COVID, I think, I think that kind of went a little mellow, and then, so towards the end of 2020, a lot of places opened up. And a lot of places, you know, started like, like restaurants and hotels, you know, start were open to people to come visit and stay and all of that. So I think that triggered the second wave. And the spread of the second wave so crazy, sure that you know it was like widespread at that time. So now

Scott Benner 34:04
you when you get, first of all, you got through it. But how long did it take them to get you conscious and get you moving again? Yeah,

Akshira 34:11
so I think it took about like five, six days. I was in the ICU for about five days, and then I so when I like, it was a week of no memory, right? Like, so I wake up and it's a week later and I have no recollection of where I am. How did I end up in the hospital? And there's nobody around, because it was all isolated. Was a COVID board, like, only COVID patients were there in that ICU, so, yeah, even doctors were wearing, like, those, those suits, right? That protected them from head to toe. And so I was like, I was like, Dude, what the hell am I doing here? You know, like, what happened? You

Scott Benner 34:45
didn't think I knew it zombies. It's happening.

Akshira 34:50
Am I in some rehab center somewhere? Like, what's happening? I believe

Scott Benner 34:53
you're describing episode one of The Walking Dead, by the way. Yeah.

Akshira 34:59
Okay. It, and I was really mad at my parents for, like, abandoning me, and my husband for abandoning me, and I'm like, why am I in the hospital alone? Like, what's happening? And I was so delusional because of the amount of pain of medication I was on. I don't know what medication I was, just like, my body was so beat, I didn't have energy to do anything. I remember, like, they had to teach me how to walk after a couple of days after I woke up in the ice, they had to, like, like, a baby, yeah, the baby had a box. Like, that's how it felt. Yeah, I took like, couple of steps and Yeah, well,

Scott Benner 35:33
you're lucky to be alive. Obviously, I know, but, but then, how long after that, does the diabetes happen?

Akshira 35:39
So I woke up, and the first question. So when I met the doctor, the first time the doctor came to visit me after I became conscious, and the doctor asked me, So do you have diabetes? I'm like, what? I don't have any diabetes. What are you talking about? She's like, No, you definitely have diabetes. And I'm like, No, I don't. Are you joking? You're joking right now, I definitely don't have diabetes, and the nurses and the ICU come and give me insulin injections. I had no idea how much insulin they were giving me. What is the insulin that they were giving me? What they were giving me a basal? I remember my vision was so blurry I couldn't see anything. Yeah, during the day, I maybe I would wake up and my vision would be so blurred, and then they'd give me, I think during before breakfast, they would give me some insulin. By 12 till four, maybe I could see a little bit, my vision would be back to normal. And then again, after dinner, it would be so blurry I couldn't see a damn thing. Yeah,

Scott Benner 36:32
that it's why I asked, like, when did the diabetes come? Because I thought that, did they just wake you up and spring it on you? But they also, I realized, then they might have just thought that you had it and just went to DKA, yeah, which

Akshira 36:46
nobody told me that I was in DKA until, I think a month after, like I was discharged. So this happened in April 2021, so I think sometime in May, I went to meet, like a doctor, like that doctor who took care of me, who was, like, my, you know, my primary doctor in the ICU, so she asked me to come and meet her, like, a month after, and that's when she's like, okay, so you're a diabetes now, you need to be on insulin. You need to take this you need to take whatever X amount of units at this day, at this time before, you know, before breakfast and before dinner, and just you need to take in the morning after breakfast. After breakfast. And I was like, okay, yeah, cool, whatever. Like, I had no idea what I was doing. I didn't know why I was doing it. Pissed at

Scott Benner 37:28
your parents and your husband for leaving me in the hospital just all over the place.

Akshira 37:35
Oh, and, and I also lost my voice. I couldn't speak completely, yeah, like it was just air that would come out of my mouth. No kidding, I used to sound so it was so scary if someone would speak to me at that point in time, they were like, Oh, my God, what is wrong with you?

Scott Benner 37:53
Did they tell you? Why were you intubated?

Akshira 37:56
No, I was not intubated. Really. They don't know why I lost my voice, and so I was only worried, why is my voice gone, and when am I gonna get my voice back? You know, like, I care

Scott Benner 38:09
this guy says I have diabetes. I definitely don't have diabetes. And like,

Akshira 38:16
and I was abandon the hospital. Please? Something good.

Scott Benner 38:20
Any good news? What's for lunch? Yeah, my gosh, was it a depression that hit you right away? Did it come over time? Was it like, like, a clinical depression, or were you sad? Like, how did it feel? Yeah, yeah.

Akshira 38:33
So I think I was really upset by the whole thing. I think losing my voice was something that really, I think that was, like, the last, that was the last shot, yeah, that pushed me over and because I couldn't talk to anyone, I couldn't do anything. I couldn't like even, you know, I like the work that I do, I don't need to speak to people, you know, I couldn't do that. So I was like, Oh my god. Why? So I kind of, you know, I was, I was thinking, why am I alive? Like, you know, why did I make it through this? Because a lot of the doctors said that, you know, you're lucky to be alive. I'm like, What is, what am I lucky? What did I feel lucky about? You know, I can't

Scott Benner 39:12
talk, I can't walk, I have diabetes, yeah, I

Akshira 39:17
can't eat. What I want, no, so, like, what am I lucky? Like, what should I feel lucky about? You know, so I so I remember, you know, being like, so I don't want to say survivors guilt, but it was like, why, why did I make it out? Like, I just couldn't figure it out. And how I did take, take couple of therapy sessions. But, you know, therapy, in therapy, you need to speak, and I couldn't speak, so that didn't go really well for me.

Scott Benner 39:42
You just sat there and somebody told you how to feel.

Akshira 39:46
No, I mean, I would try to, you know, get involved, yeah.

Scott Benner 39:53
How long till your voice came back? 810, months. No kidding, really? Yeah.

Akshira 39:58
Wow. So I. Did vocal cord, vocal cord therapy. So the lot of exercises that involve you making different kind of noise and vibrations with your mouth, and, you know, so I saw vocal cord like a like, voice therapist, yeah, had to do that for some time. And is

Scott Benner 40:18
that, I think, like a common thing from, like COVID or from, have you heard any? Has anybody given any explanation for it? No,

Akshira 40:27
no. Nobody could explain why that happened, or how did it happen? Is it common? Very, very, unheard of. I think, I think it was just me, or maybe I don't know. Sometimes they say it could be fatigue, or maybe you know you nobody knows, you know, nobody knows why it happened, and nobody knows how I got it back as well. Well,

Scott Benner 40:48
it's lucky. I mean, I guess you are lucky. Do you feel Do you feel luckier now that you've had time?

Akshira 40:54
I'm not lucky, is the right word, but I do feel grateful that, you know I'm that I had the support system, that I had people who, you know, who took care of me and were there for me, and you know, who could help me through it. And, you know, I think it was more difficult for my family than it was for me, because I don't remember a damn thing. And you know, they had to live through those few days where they had these intense calls from the doctor, and doctor was just giving them bad news. And, you know, yeah, so I think, I think I'm just grateful that I had those people who were taking care of me, and I made maybe I made it. Maybe I'm lucky because I have them. Yeah,

Scott Benner 41:30
I just well for sure, but it is really, it's such a good point, honestly, though, that not that I think people would have skipped over in your conversation, but your family is being told it's on you to go find medication. She's gonna die, and there's nothing we can do about it. That's I mean, have you talked to your parents about that? Yeah,

Akshira 41:51
I did. So this, this response they were given at that time was very common. A lot of doctors were giving that response because they couldn't find that medication, and it was so scary,

Scott Benner 42:01
but still, forget what's going on in the world. Like, on a personal side, somebody comes to you and says, Hey, you don't know how to get medication, but if you could do it, it'll save her. And if you can't, we're not sure what's gonna happen, right? Like, yeah, yeah, lot of pressure. I

Akshira 42:15
mean, yeah, they were, like, really stressed at that time too, you know, and I, even now, my dad says that I was so glad that that they didn't get COVID at that time, because I think COVID got everybody except for my mom and dad. You know, there were, there were the two people in my house who did not get COVID, and because of that, they were able to, you know, do all of this running around and, you know, arranged all these, you know, all these medications. And, you know, get, they were able to visit in the hospital whenever they could, a lot of that stuff. So no,

Scott Benner 42:50
Jesus, really crazy. So I think I've kind of saved this last bit of our conversation, because you just, in your notes said, like, existential questions. And I want to, I want to, I want to talk through that. That's That's really interesting. But first I have to ask you, I mean, you're sitting, do you want to share your location? Or no, you're sitting somewhere in Southern India, and I'm in New Jersey, like, how the hell do you know who I am? And I had that feeling, and then I went and looked. And today the podcast is number 62 in India, in the medicine category. So you're not the only one listening to it.

Akshira 43:20
I think I've heard you say that before that it's very big in India. Single handedly, take credit. No, I feel like I'm your biggest listener. Like, that's what I mean, you know.

Scott Benner 43:34
No, listen, if you're out there telling people about it, I'm happy to give you credit. But, like, how does that initially listen? You're younger than me. And so the internet, I don't want to say that the internet is surprising to me. It's not but I grew up through all kinds of shifts in technology, like I know that there were things that I used day to day in my life that if I put it in front of you, you'd be like, I don't know what this is. I can't even imagine what this does, right? And so there's been these big leaps I've kept up because of my job. So to be perfectly honest, I might be on the bleeding edge of technology with everybody else, but it still somehow finds the 12 year old inside of me, and he goes, I don't understand how a lady in India knows who you are. Like. Do you know what I mean, like or like? Yeah. So how does that happen?

Akshira 44:23
I think it's about last year, or maybe it towards in 2022 end of 2022 where that's when I was coming to terms with the fact that, okay, I do have diabetes. My voice is back. Now I have to focus on, you know, the other aspect of my aspects of my health. And, you know, get that into order. And like any millennial word, you know, there were, I was on Instagram trying to find people who also have type one. And I found somebody who said, Oh, talked about your Pro Tip series. And I think podcasts were becoming really popular in India around that time, during COVID time, I think. And, yeah, so I. Started listening to your Pro Tip series. And yeah, so that's and from there, I have not listened to many of your older episodes. I do listen like maybe 800 and upwards. Is when it's when I started, yeah, yeah, yeah. So that's, that's when I started listening to your podcast. And I listen to it every day. It's what I listen to when I go to work. Because I think, I think when you upload is kind of coincides with when I'm going back from work, so, you know difference? Yeah, yeah. So

Scott Benner 45:28
I'm just gonna go get my kids after this and tell them, because they they just laugh at me constantly. It's very funny to see like, like, right now we're having this conversation, like, I seriously might be announcing a cruise for listeners like, like, next year, right? And I said that, like, in the house, and both of my kids were like, no one's gonna do that with you. And I was like, I think they might. And she both of them are like, you're out of your mind. And one of them started just laughing. And I was like, I wonder if I said to them, like, Hey, I just met this person. By the way, she listens to my podcast in India every day. If they'd be like, No, she doesn't. But, I mean, I'm aware, obviously, the podcast charts in 48 different countries, but it's limited by English speaking, like the ability to speak English. Can I ask you one quick question before I move on in your story? For me, we're researching right now. We have some back end work happening with putting the podcast into different languages, but like the the spoken word will be aI generated. Do you think that's listenable?

Akshira 46:32
Not really. I think, I think, I think in India, I think English is fine. I don't think that's

Scott Benner 46:38
it's not. If English isn't a barrier there. No, it

Akshira 46:42
isn't. And I didn't want to tell you this, but I listened to your podcast at 2x speed.

Scott Benner 46:49
I must be really fast at 2x speed. No, yeah.

Akshira 46:55
So the last week, I've been listening to it in normal speed, just so that, you know, I can understand your voice modulation, all of that other stuff better. But I don't think English is I did hear in in some episode, I think with Jenny, you were talking about doing it in translating it in Hindi, and you were saying that Hindi is the largest speaking language in India. So I don't think English has too much of a barrier. Okay, if I'm being honest, I think, I think English is fine. Okay, that's what

Scott Benner 47:22
I wanted to know. Thank you, because it's a lot of work and effort behind the scenes. Yeah, also, let me put this out to you. There will be a cold wind episode in the next couple of months with me and an Israeli doctor, and she talks faster than I do. So if you can listen to us speak at two times, I'll be very impressed. I It's not often that I'm recording with somebody and I think, oh my god, slow down. But she was so fast. Oh my god. Okay, all right. So what did you mean by like, existential questions, like, what's happened to you in the last couple of years? Yeah,

Akshira 48:01
yeah. I think I'm just going back to what I said, you know, in terms of why, why did I make it out like, you know, I went through such a difficult time, you know? And if the dka complications were really tough, and it was really hard to wrap my head around the fact that I'm here today, and, you know, my that I that I get to live, and I didn't know why. I honestly thought if I weren't here today, it wouldn't make any difference,

Scott Benner 48:26
had you felt like that prior to this?

Speaker 1 48:28
No, no, I didn't know. Why

Scott Benner 48:31
do you think you have that kind of like, because it's because you're not, you're not suicidal, right? No, you don't want to be dead. Like, right? Like, so something happened. You got close to the edge of death, and, yeah, you are suddenly seeing the bigger picture about life and existence. Yeah, I guess.

Akshira 48:47
So I just started really pondering about so a lot of people in India, like, I think, all around the world, right? Many people died during that time. So I was just wondering, why am I the lucky one, you know, why? Why am I here?

Scott Benner 49:02
Has it given you a different focus? Do you attack things differently now? Do you appreciate things differently, or is it just a nagging question in the back of your head?

Akshira 49:10
No, I think it definitely made me take my health a lot more seriously, and really wanting to do better, and wanting to, you know, just be there for my family like they were there for me. Yeah, I think, I think just gave me a lot of gratitude and a sense of appreciation for those around me. Yeah, mostly, yeah. How

Scott Benner 49:30
do you see that materializing in your day to day life? Have you noticed changes about yourself? Is it more about how you think about things, or are you are you consciously doing things differently.

Akshira 49:40
Yeah, I think I'm just a little bit more mindful, I guess. And I think a lot of that does go to the way, you know, I started really looking at my diabetes and, you know, started taking care of it. And I think, like, a year, year and a half ago, I really didn't care if I was sitting at 202 50. You. All like, you know, the whole night, yeah, I didn't think anything of it, yeah, but I think there are times now that I do, you know, that I do think about how difficult it was when I was diagnosed during 2021 and I really want to be more careful about those things. And, you know, really want to be on top of my health and of my diabetes, yeah, was

Scott Benner 50:22
my Pro Tip series helpful for you to make changes? Or did you know definitely it wasn't like you knew what to do and you just weren't doing it? Or does it like, does it give you a motivation, or does it give you knowledge? Or both,

Akshira 50:35
um, I Yeah, it was knowledge primarily. I had no idea what I was doing. I had no idea what to do, nobody so until a year ago at my doctors. What I'm trying to say is that only a year ago in my doctor's office, they taught me how what is the carb ratio, but I learned it much before that, thanks to your podcast and your Pro Tip series, wow. I think there was one episode that you did with someone who talked about the water method of fat and protein impacting in, you know, blood sugars, yeah, so that was like a game changer of Indian food is very fat heavy, yeah, has a lot of fat and a very common way when, when people go out to eat, a very common thing that you would see a buffet and buffets would have, like, a lot of mixture of food from all over the world, like you would have into, like Chinese food, like Indian ice, Chinese food, and, you know, Indian food and and bread and all of that, you know. And I think, and I will always see that fat spike, like, four or five hours after I've eaten, right my food. And I never understood why I was like, What am I doing? Because three hours after I've eaten, maybe I'm in range, but then the fourth hour I'm just like, high, high, high, and it's not going down. I had no idea, yeah,

Scott Benner 51:50
so no one told you that. When you hear people talk about the direction they get from doctors in America, is it the same thing that happened to you? So

Akshira 51:59
I had like, three doctors in three years, okay, who were really not helping me at all, like not helping me on the day to day stuff, like, you know, they would like, if I would go to them once in couple of months, they would say, okay, increase two units, you know, of your breakfast. And so they would call it like breakfast insulin and lunch insulin, which is, like, so irritating now that, you know, look back on it. Nobody even taught me what a basal Bolus regime is. Nobody taught me how does basal work? Nobody, you know, nobody educated me on all of these things. I think I learned a lot of that from the podcast and and just a year ago, the doctor that I go to now are the, you know, the hospital that I go to now that's where I, you know, get a little bit more help from, you know, from my from them, and they put me on the pump. And are

Scott Benner 52:51
you getting more help from them? Because you know the right questions to ask. Now, yeah,

Akshira 52:55
yeah, yeah. And I know what to look for. And sometimes when I ask these questions, I already know the answers. But, you know, but you just, you did ask you did

Scott Benner 53:04
ask it, because I would give anything to be there in an Indian hospital when they're like, how did you know that you said there's a man named Scott on the internet. I would love to be there for that conversation. I just see the look on their face, yeah. So moving forward. Do you think? Like, do you have goals that are out of the sevens with your A, 1c, and how do you think you get to that? Yes,

Akshira 53:27
there are definitely. I don't want to be in the sevens. And I think that was another aspect why I wanted to come on the podcast. Because all these so inspiring stories, like, within three months, you know, I came from an eight to a 5.2 and I'm just sitting in the corner and crying. I'm like, Oh, my God, no, I can't do it. I think in three months I can move it by point two. Like, so I've been so consistent. Like, I go from a 7.8 to 7.6 to 7.4 to 7.2 that's how my craft, you know, have been in the last year. Yeah. So my goal is definitely to be, like, I said this year. I really want to be in the like, that's that's my goal, and

Scott Benner 54:01
that's doable, you think, yeah, I think that's doable. What do you change to get to that? What do you have to do? Yeah, a lot

Akshira 54:08
of it has to be, you know, more diligent with, you know, pre Bolus thing for my meals and and the bumping energy and the corrections, like, you know, if I'm sitting at 141 50, I think I don't care about it during the day. I think I need to be more diligent about that. And kind of you know, I'm sure that I'm below 120

Scott Benner 54:29
at least. I see, what are your alarms set out on your Libra? Oh, they doesn't have alarms. It's the libre one. So,

Akshira 54:35
yeah, correct. So, so what? So, what I So, what you can do is, there is this transmitter called the mm three or something. Okay, so it's like a, it's a made in China thing, so you can add that,

Scott Benner 54:50
are you wearing it? Oh, I've seen that before, yeah. And then that, like little box that goes over top,

Akshira 54:56
Yeah, correct. Correct, correct. Yeah, I've seen that before. So that works. Like that sends data to my phone. So I don't have to keep scanning up with the libre one, you have to scan it to your device. Right with that transmitter, it sends data to your phone, and you use a third party app that you know gives you those numbers. So I do have alarm set at 150 so post 150 I am, like, really mindful about it, and then try to push it down. But if I'm sitting between 130 to 150 I think I don't take too much action. I think I can be a model. I can be more diligent with that, okay. And secondly, I think the right, the GLP medication has literally helped as well. I wonder

Scott Benner 55:33
what happens when you go to the 14 milligrams too? If that, if that maybe does something as well. Yeah. And

Akshira 55:39
so, so I just wanted to, so I was also having insulin resistance and PCOD before I had COVID, right? Like, so I, so I live like, 26 years of my life as a normal human being, right? Like, I didn't have, not that I'm not normal now a functioning pancreas, right? Yeah. So I did have PCOD at that time, and then did have insulin resistance, so if any, so if I were, if I was not diagnosed in the way that I was, like, you know, I had COVID and decay and all of that stuff, I'm 100% sure that I would have been diagnosed as type two diabetes, type two diabetes, and I would have been given metformin and all of that stuff, and I would have struggled for years and years. Yeah, in a way, I'm really grateful that I did get diagnosed the way I did, because that that it clearly pushed me into the type one category. Then they quickly, then they did the JD antibodies test, and then the C peptide test and all of that. It was like it really indicated on the type one realm, whereas if I hadn't been if I hadn't had that diagnosed story, I would have definitely, you know, clearly classified into type two. I'm, I was always a little bit on the, you know, the not on, not on the leaner side, like I was a little bit on the heavier side. I would carry more weight in my stomach. So anybody would look at me, would, you know, probably think of me as, yeah, she has, you know, she would definitely have type two diabetes. Yeah. So India,

Scott Benner 56:59
I see here that type one in India is growing by 6.7% a year. Yeah. And actually type two only grows well only, but grows by 4.4% in India. So it's it's outpacing type two is in growth. That's really something. And then you have to go find all this information for yourself. And then you've got to self pay your stuff. Is your pump? Are you paying for your pump? Out of your pocket too? Your pocket

Akshira 57:23
too? Yeah, I did. I did, yeah, that's like maybe a year's worth in rent. Maybe that's like a one time cost for the pump, and then the supplies are additional.

Scott Benner 57:34
Yeah. So when you hear people in America complain about stuff, do you giggle a little bit when you're listening the podcast?

Akshira 57:42
I No. I mean, I understand the sure, like each system has their own struggles, I guess. Yeah, you know, I do understand the perspective. But see, the thing is, in India, if you can pay cash, things are easy, like a life is easy, like if you have more disposable income? Yeah?

Scott Benner 58:01
Well, you're describing the entire world. But okay, yeah,

Akshira 58:05
no, what I meant, no, no. So what I'm trying to say is, from what I've heard, like a while of insulin, just in clear monetary terms, is more cheaper to buy in India than it is to buy or in out of cash, in in the US, I would imagine. Okay, yeah, yeah. So what I'm trying to say is that if you have, if you have that disposable income, and then it is more easier to do it in India than it would be to do in in the US, sure.

Scott Benner 58:32
But you also just said, If I, in case I, unless I misunderstood, is that the Ipsum Ed pump cost you the equivalent of a year's worth of rent.

Unknown Speaker 58:39
Yeah,

Scott Benner 58:40
right. So, you know, I'm just saying that's, it's insane, like it just Yeah, and you'll have to pay that. Are there supplies that you'll have to

Akshira 58:52
Yeah, yeah. So, so if you count the cost of the libre sensor, my rival, and the pump supplies. So that's so I'm paying like, I'm paying my rent, and I'm paying the equivalent of amount of my rent for for my diabetes supplies as well. Jesus, yeah, yeah, my gosh, a lot of money. Well, it

Scott Benner 59:15
is, and it's money that could be going towards your savings or your living situation, or, you know, any number of things, honestly, Yep, exactly. Wow, was this hard for your husband to accept? Yeah,

Akshira 59:27
it was. So we were married a year before I got I got diabetes, so, and we were dating for a couple of years before that. So it was definitely harder, and I think so. So I think a lot of it was more incremental. It was not like one day, it was 3x the expense that, like, initially, we started with MDI, so that was a little manageable. Then we moved to the pump, and that was like a little extra, a little more money. So that's okay, we could manage and then now I'm on diabetes, so that's like a little more money, and now to manage that as well. So yeah,

Scott Benner 59:59
are you guys? We. Guys arranged? Or did you meet on your own?

Akshira 1:00:03
No, we met. We met on a dating site, actually. So yeah, and we've been together for, I think, seven years now. Good for

Scott Benner 1:00:10
you. Congratulations. That's lovely. Yeah, gosh, is there anything that we haven't talked about that we should have, anything you wanted to bring up that I haven't gotten to? Yeah,

Akshira 1:00:18
so I just wanted to talk a little bit about the pump, and so we so I don't use, I don't have any looping system that I can use with the ipso med pump. If you have, I think if you have the Medtronic, you can do some, there are some, there are some ways to a loop with using the Medtronic.

Scott Benner 1:00:36
There's an APS that works with Medtronic, and a couple of other things that you

Akshira 1:00:42
can do, yeah, I think there's something called a Riley link, or something like that that also works. If you have that, you are able to loop with that, with that pump. But I, but my, my doctor asked me to go for this, and I, I, yeah, I think I just went for it without thinking too much about it. So, yeah. So I think using that, using the pump, is definitely really helped. And just just and again, thanks to, you know, the episodes that you did on the on the Pro Tip series, on, you know, how to manipulate basal, how to do extended, you know, Bolus, and how to eat, I didn't even know, like doing, you know, 2x you could increase your basal by, you know, right, 100% for a period of time. All of those things were so helpful. Like, nobody told me that, nobody taught me that. So a lot of that was, you know, self learn, self taught, I guess I said I learned it from, you know, the podcast. So a lot of people in India, do, you know, kind of argue about, should they, you know, use the pump, or should they stick with the NDI because it's more affordable and it's, you know, it's more easily available, rather than the pump, yeah, and I think it's not just a mode of delivery of insulin. I think it really, you know, helps you understand how to adjust your insulin to the way that you eat food. So, yeah, that was, that was another thing that I wanted to talk

Scott Benner 1:02:08
about. I'm I was looking around a little bit here the my life, Ipsum Ed pump does pair with the Dexcom g6 and the my life cam, APS, FX, which is an algorithm. It also goes to FreeStyle Libre three,

Akshira 1:02:22
yeah, I don't get, we don't get any of that in India, yeah. I mean,

Scott Benner 1:02:26
if you just have the one now, you could be years away from seeing any of the other generations of that stuff. The company's gonna have to stop making it so that you can probably so that they start giving it to you. That sucks.

Akshira 1:02:39
Oh, maybe you can put in the word text. I'll

Scott Benner 1:02:43
call up. What I'll do is I'll call up Parliament, and I'll call up a couple of other places, and I'll get the whole thing worked out for you right here from New Jersey. Yeah, yeah, that would be great. Somebody, somebody said something to me recently. They were like, How come you don't just get this? And I was like, I think you overestimate my power. I can't make that happen. That's funny, though, but, oh, geez, bump side, you know, because you would use an algorithm if you could, wouldn't you? Yeah, yeah, definitely, 100% you're way ahead of the curve for India, for understanding this stuff. Or do you know, a

Akshira 1:03:14
lot a lot of people, no. So a lot of people do low carb just because it's easier to manage with the technology that you have, and it gives you more stability, or, you know, more more predictability in the way that you're in your blood sugars look like. A lot of people who have diabetes do low carb in India, or that's what so any doctor, the minute you go to a doctor and they see that you have diabetes, the first thing that's going to come out of their mouth is low carb, they're just going to tell you to do low carb. And I was, like, really frustrated by that advice, because I don't want to look up, yeah, you know, but, and that's also not addressing the problem, right? You're they're not teaching you how insulin works. They're not teaching you how to manage your diabetes. They're just telling you traveling the foods that you eat in for the last 20 years and eat something completely different, and that's going to help with diabetes, but that's also not sustainable. I For me personally, in the long term, right? So, but rather than spending time to educate people, they would, they give you give out the easier advice, which is to, you know, do low carb.

Scott Benner 1:04:18
I wonder why? I mean, there's got to be something I don't understand about the business side of this. But why, if I sold an insulin pump, would I not want to sell them in India? You know what? I mean? Like, there's a lot of you, and there's a lot of you who are having like, diabetes. Like, why would I? I wonder if India does India stop American companies from doing business in India, or, I don't know, but, like, it just seems like such an obvious thing.

Akshira 1:04:44
Maybe it's a one time cost that's associated with buying the pump is, like, really expensive. Yeah, I think that because it's not like, so insurance doesn't cover those that kind of expense, right? Like, you have to pay in cash. Much. So it's a lot of money, you know, like, you the amount of money that I use for that I used to buy mine. So I can do it. I can, like, you know, put a down payment for a house in a very good area, right? Like, Well, what

Scott Benner 1:05:11
I'm getting at is, why would the insulin pump company not say, look, let's sell them cheap there. Because we're going to sell so many of them will be okay. Like, you know, because there's two ways to go to value your your your product. It's either I'll make something expensive so that we make a bunch of money off of it, or I'll make it cheap and sell a lot of it like there's those are basic business ideas. There's got to be, there's got to be a component there that I don't understand, because it just seems like an untapped market and and a very I'm generalizing here a little bit, but a very technologically adept population in India too, you know what I mean? Like, this is the kind of stuff you guys would love if you had it.

Akshira 1:05:52
Yes, yeah, yeah. Maybe, maybe it's the education aspect of it. Maybe there are too many people and not enough educators to, you know, help spend the time. I don't know

Scott Benner 1:06:03
feels like people don't want to make

Akshira 1:06:08
money to me, or maybe they should just send links of your podcast to everybody that. I mean, that would be simpler, right? Yeah, that would just be easy, yeah, because episodes are already there, all you have to do is press play

Scott Benner 1:06:18
exactly. Can you imagine if I do a talk in India one day, that'd be nice.

Akshira 1:06:22
I think that would be, yeah, well, thank

Scott Benner 1:06:24
you. I appreciate that. It is, I mean, in the end, just having people's best interest at heart and giving them the information that they need to grow and make decisions with is really most of it. It really is like it's, you know, there's, I'm not saying anything. I don't say anything on the podcast that's that difficult to understand or that crazy, like, you don't even mean it's not like I'm saying something. People like, oh my god, I can't believe it. Did you hear what he said? I should, I should Bolus before my meal. Like, you know, like it's, I know, if you never heard it before, it sounds crazy, but once you're accustomed to it, this is not like brain surgery level stuff I'm saying here, like, it just, I'm just, you know, I'm just the only one saying it, you know what? I mean, like on a big platform, yeah,

Akshira 1:07:12
yeah, you know. I remember very vividly the doctor, when they distract me from the hospital after I was diagnosed, literally said, do not take your insulin 10 to 15 minutes before you eat. You have to take it 30 seconds before you eat.

Scott Benner 1:07:28
I mean, then you're going to have anyone seen anybody? Yeah,

Akshira 1:07:30
and I did, and I did have an even seen the age for, like, two years, two and a half years. And I was like, What am I doing wrong? I'm doing exactly what I was told.

Scott Benner 1:07:39
Yeah, no. I mean, it's, it's, it's obvious. And then you add the high carb, high fat, you could, you could easily get an eight or a nine, A, 1c, and be trying with that, with that information, and God, if you gave up, you could, I mean, it wouldn't be any trouble to have a 1214, A, 1c,

Akshira 1:07:57
yeah, definitely. That's true, you know, and, and I knew that I didn't want to do low carb, and I, and I still don't want to do it. I had, I had lost so much weight just before I was diagnosed, so, you know, and I gained so much of it back after I was diagnosed. And I think, I think in those so and I was never scared of insulin either, because I would never see, you know, I've heard stories of people telling how one unit, you know, push them to a severe low and they were like, drinking juice, allowed to juice, and getting it back up. I have not seen any of that like I have not seen those kind of effects ever in the three years that I've been diagnosed. I had so much resistance already, because maybe I had PCOD, I had insulin resistance, right, right? So that insulin didn't work like that. And I can tell you, after being on the on the GLP medication, I have seen one unit moving me like crazy.

Scott Benner 1:08:47
Yeah, oh, I bet. Listen, I swear to God, Arden's going to use 16,000 fewer units of insulin this year. Being on a GLP medication, 16,000 fewer units of insulin. It's just fantastic. But while we were sitting with her doctor an hour and a half ago, she's like, Well, we definitely wanted to be able to eat more frequently, and we wanted to not, you know, we wanted to put a little more weight back on very important nutrition, etc. Like nobody's saying no, but the next pause step was, but we got to find a way to keep this going. We can't give away what's happening with her diabetes here, like, this is, so we're gonna back her dose off. If that doesn't work, we'll start spreading the dose out. Like, we're gonna try all kinds of different things, but she's getting such a benefit that I'm not saying we want her to be, you know, underweight, obviously, no, just like, obviously, we want her weight to be good. We want her nutrition to be good, etc, and so on. And we're gonna, you know, make sure things are balanced for that, but at the same time, I mean, you saw her graph. We can't give that away. You know what? I mean, like, that's some sincere, long term health implications there. So, so we're looking for a balance. We're gonna move her, remove her dose again, a hell and. Anything, if rib elsis Is is good for people, then let's go, I mean, you're gonna see the injectables be more aggressive and maybe work better if, you know, overall weight loss, etc, everything else that comes with it. But my God, like if, if rib elsis is helping you like this, then every type one should be taking one of those pills every day to see what it does for them, you know, yeah, see if they can help.

Akshira 1:10:23
Once, when I was eating something and I took, like, I think, two units extra, and I was like, in the 40s or something, I was like, Oh, my God, it's happening to me. Finally, that one extra unit that I took, it's the same thing that those other people on the podcast. Yeah,

Scott Benner 1:10:41
well, it's not do. It's not, not doable. Like, you know, people all the time think that it's, oh, that's for someone else. But, you know, listen, there's going to be situations where people can't do everything that somebody else does. But for the most part, using insulin correctly. It does what it's, you know, it does what I say, generally speaking. And for a lot of people who glps work for, they're going to see these kind of benefits. It's just what's going to happen. You're going to look back in a couple of years and look at all these people are right now going, Oh, type you or type one. You can't take a GLP and like, you wait till you see, like, how it changes. So, yeah, big time stuff. Yeah, I'm going to have to say goodbye. I'm running out of time. Also, I'm choking to death. I want to thank you very much for doing this is absolutely terrific. You were, you're fantastic.

Akshira 1:11:25
Thank you so much. Great time.

Scott Benner 1:11:28
Oh, good. I'm glad. What time is it there? By the way,

Akshira 1:11:31
it's 1050 at night. Oh, well, also, you

Scott Benner 1:11:33
got to go to bed so but hold up. Hold on. One second for me. Don't go away. Okay, thank you. Yeah, you

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#1355 Bigfoot, Aliens and Diabetes

Scott Benner

A child's T1D diagnosis led to the discovery of a rare genetic condition that saved her mom's life.

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

+ Click for EPISODE TRANSCRIPT


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

Scott Benner 0:00
Welcome back, friends to another episode of The Juicebox podcast.

Samantha is back. She's a returning guest, and she's here today to talk about how her child's type one diabetes led her to find out that she had a rare disease and that saved her life. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com don't forget, if you're a US resident who has type one or is the caregiver of someone with type one, visit T 1d exchange.org/juicebox right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help to Today's episode is sponsored by Medtronic diabetes, a company who's working to make the invisible visible through their blue balloon challenge. Life with diabetes is like doing everything in life while trying to keep a balloon in the air. The blue balloon is a powerful metaphor for the daily struggles that those living with diabetes go through Medtronic invites you to join the challenge by taking a video of yourself balancing a balloon while doing something in your everyday life. Post your challenge on social media with the hashtag, blue balloon challenge and follow at Medtronic diabetes on Instagram to see other blue balloon challenge videos. Today's podcast is sponsored by touched by type one. Check them out on Facebook, Instagram and at touched by type one.org. If you're looking for an organization who's helping people with type one diabetes, you're looking for touch by type one.

Samantha Arceneaux 2:13
Hi, my name is Samantha arsenell, and I am in Orlando, Florida.

Scott Benner 2:16
That was easy, wasn't it? Yep, always the hardest part, perfect. You had your voice was all nice. You paused, collected yourself. It was lovely. That's a for everybody listening. That's how you do it. Sometimes I'm like, whenever you're ready go, and before I can say go, they're like, I'm Bill. And I'm like, All right, well, slow down, man. It's like, we're not in a rush. Yeah. So Samantha, you are a past guest. Let's tell people that. Yeah.

Samantha Arceneaux 2:39
So I've been on twice before, and the topic, both times, has been regarding insurance and between how to kind of appeal for things and fight your way through insurance guidelines, as well as how to save a bit of money picking your insurance. I'm

Scott Benner 2:55
going to look to see if I can figure out what episodes you were on. Well, one was

Samantha Arceneaux 2:59
the beginnings, the bull beginnings. So yep. And then the other one I believe, is episode 67 but I could be wrong. It's in the 60s. That's insane.

Scott Benner 3:08
It's episode 61 you were on the show 1016

Unknown Speaker 3:13
Yes, very early on.

Scott Benner 3:15
Oh, my God, that's eight years ago. That's

Unknown Speaker 3:17
fast. That's how long we've known each other. Oh, wow,

Scott Benner 3:19
look at us. But today we're not talking about insurance. We're going to talk about an experience you've had with your kid and your life. I don't really want to direct you through it, so why don't you just tell me the story, and then I'll ask questions.

Samantha Arceneaux 3:32
Yeah. So when I first reached out to you, I had a couple different things going on, and it just kind of seemed like very odd coincidences related to type one, but I think I'm probably the first guest that you'll have on your show who can genuinely say type one diabetes saved my life. So that's kind of like my claim to fame now. So I had a situation where, obviously my daughter was diagnosed with diabetes very early. She was 22 months old. Her name is Michaela, and I was pregnant with my second daughter at the time. And, you know, you kind of go through that panic when you're first diagnosed, of, is this going to be hereditary, where my other child can get it? So I started down this rabbit hole, so to speak, of DNA testing, you know, genetic testing, just trying to, you know, in my Mom Brain, see, you know, does Michaela have one version of a genetic mutation, and does my other daughter also have it? So I submitted all of our DNA through 23andme and at the time, my husband's like, No way. You know, they're gonna store your data. I'm not doing that. You know, total just conspiracy. You know, don't, don't want anything right, like this is also the man who hadn't been in the doctor in like, 10 years. So, you know, typical with the healthcare situation. I did that and realized I can get the raw data. So when you go on 23 me, and you submit for the health they give you your files, and then you can take that data and. Upload it to other companies that will do a little bit of a deeper dive than what 23 me is able to. So I use this company called Prometheus, and it was $10 to upload this data. And it kind of just, it doesn't diagnose you with anything, but it takes studies that are out there and gives them a rating as to how much of a correlation there is to what your DNA is presenting as. So when I did this, I found both of the girls to have something called, and I'm going to Butch butcher this familial hypercholesterolemia. So it's basically a genetic disorder for high cholesterol. And because me and my two daughters had done it, I realized I was not having this same alert kind of come up. And when I researched it, I realized it has to be from a parent, like, there it's it's definitely a parent hereditary thing. So I was like, okay, it has to be coming from my husband, right? My husband's in complete denial. Nope. Not me, not me, definitely not me. So I'm sitting there. Okay, that's that's fine, whatever you know, trying to get him, you know, at least check his cholesterol, not happening. You know, some people might know I am a board of director on touch by type one, which is one of your your brands that you have is on the show as well. And you speak at our yearly conference. Some of you may know we also have the D box, which is a free box that we send out to newly diagnosed patients. But back in the day, when it was first starting, we would sit around, have a small group of volunteers, and we would assemble the box together. A friend of a friend just happened to be volunteering that day, and she was mentioning that she worked for a local hospital system in their research department, and that she happened to be researching, FH, the short name for the one I'm going to butcher clearly. So I go, you know, no way. That's amazing. My kids were recently found to have this, and I'm trying to get my husband tested. And she goes, Well, we have a free study. Like, fantastic. I can get him the study. So I asked him, he's like, No, no way. And I said, Well, babe, why don't I come with you? You know, we'll, we'll both test and definitively see who it is, right? Because in his mind, he's going, it's gotta be her, you know, I'm, I got the good genes, right? That was kind of my sway to get him in, is that I agreed to go with him, knowing I was already negative. So we went in, we it was an easy, you know, swab sample, and they had a little form that said, Would you like to hold on to your sample and compare it to future studies that we meet do at the Research Institute? And, you know, I'm like, sure, you know, keep my sample, compare it. And my husband's like, no way they're destroying my sample. So fast forward two and a half years. I get a call from the Research Institute, and they said, we just want to let you know your sample has come up positive for one of our other studies. Okay, what's that? And they said, it's the RET gene. Never heard of it. They said, well, people with mutations in the RET gene are basically people with multiple endocrine neoplasia, again, have no idea what they this means. And they said, well, people with multiple endocrine neoplasia, it looks like you would be type two. Would basically have a 95 to 100% guarantee in your lifetime of developing medullary thyroid cancer. And I was like, Excuse me, and they said, typically, this is hereditary, meaning everyone in your family line kind of knows they have this because of the prominence of this cancer. So they will start testing babies for this, and if they're found to have this mutation, their thyroids are removed by age five, so that they don't develop this cancer. Obviously, getting this news at 37 like, what does this mean? 32 years late, apparently.

Scott Benner 8:48
But go ahead,

Samantha Arceneaux 8:48
exactly, and no family history whatsoever. So mine happens to be so first of all, let me give you some stats about this disease. So you kind of know it's one in 40,000 people get this, so it's considered a rare disease. Out of those cases, five to 9% are de novo cases, which means there's no family history. So you're taking a rare disease and you're kind of breaking it down even further. And then out of the cases of medulla or me and two, there's 5% of us who have the less popular, I guess you would say codon changes. So like, 95% of those cases are from, you know, certain codons. And then there's, like, the little 5% so I'm like, you're going like, five to 9% are spontaneous mutations, essentially. And then 5% of those are this, you know, even rarer codon at the time, it was like not found until 2014 this variant to begin with. And there's only like 30 people that they've identified in the world who have my particular variant, the thing with 30, go ahead. So the thing with multi. And medullary thyroid cancer is that there are basically no symptoms until you are already stage four. So if you have a symptom before stage four, typically it is going to be diarrhea, which, as we know, a lot of different diseases present as diarrhea stage four. The statistics for survival rates are in the 40th percentile, which means it's a very, very deadly disease. I never would have known I had this disease. Had it not been for my daughter's type one diabetes, you

Scott Benner 10:30
would have just pooped and then died. Yeah, pretty much. Like,

Samantha Arceneaux 10:33
you know, this is like Insanity. So of course, then it's like, you know, the study is, what do you do with this information? It's not like, hey, we have a pill we can put you on. Here's here's what you do. It's like, what do you do? Well, obviously, I'm going to go get tested to see if I already have cancer at 37 when you're telling me, most people are getting cancer in their 20s and early 30s. So thankfully, I will say, you know, I was found to not have an aggressive codon, which means the moderate risk, it could be anywhere from your 20s to your 70s when you develop this. So that's that's kind of like a unique thing that, wow,

Scott Benner 11:08
that's nuts. Now they take your thyroid out.

Samantha Arceneaux 11:11
So that is the possibility. So I actually was in contact with one of the leading thyroid cancer doctors. He actually lives in Tampa, so not too far away. And he said, Listen, you know you are able to test. You know, now that you know that you have this, you can do certain tests. And basically there's something called calcitonin. So interestingly enough, with all your thyroid series, Scott, this is not something that impacts your TSH, your t3 your t4 even though it's all still in your thyroid, you will have still perfect numbers of those levels, because it is going to affect the calcium producing part of your thyroid. So again, never kind of like causes these crazy symptoms where people are going to get tested to see if they have this cancer. For Leah,

Scott Benner 11:58
her husband, plays an instrumental role in helping her keep her balloon in the air while managing all of life's ups and downs.

Speaker 1 12:05
He is my biggest supporter, my biggest cheerleader, my shoulder to cry on

Scott Benner 12:11
this episode is sponsored by Medtronic diabetes, a company who is working to make the invisible visible through their blue balloon challenge.

Speaker 1 12:19
This person loves me and wants to take care of me and wants to understand what I'm going through and help take on that burden. That's why he's my community. He has helped me continue to live a healthy life with type one diabetes and not reach those breaking points. Sounds like

Scott Benner 12:35
between your husband and Medtronic technology, you're able to keep that balloon in the air longer,

Speaker 1 12:39
100% I think it is such a perfect analogy. Because if you've ever tried to chuckle a blue balloon while doing all your other daily tasks and managing diabetes and all that stuff, such a spot on analogy as part

Scott Benner 12:55
of this year's blue balloon challenge, Medtronic will be donating to break through T 1d to support their work to achieve affordable access to current therapies, drive adoption of innovative technologies and fund research for future T, 1d, breakthroughs. Post your video on social media with the hashtag blue balloon challenge and follow at Medtronic diabetes on Instagram to see other blue balloon challenge videos touched by type. One has a wide array of resources and programs for people living with type one diabetes. When you visit touched by type one.org Go up to the top of the page where it says programs there, you're going to see all of the terrific things that touched by type one is doing. And I mean, it's a lot type one at school, the D box program, golfing for diabetes, dancing for diabetes, which is a terrific program. You just click on that to check that out, both for a cause, their awareness campaigns, and the annual conference that I've spoken at a number of years in a row. It's just amazing, just like touch by type one, touched by type one.org, or find them on Facebook and Instagram, links in the show notes, links at Juicebox podcast.com, yeah, in the end, this is a thing that like 30 people are gonna die from. So they're probably not. Nobody's looking for it. Like, yeah, at your age, especially.

Samantha Arceneaux 14:11
So here's the thing too. So if you look at all the black box labels for like ozempic and govi and you know, all of these GLP one and inhibitors

Scott Benner 14:22
take them if you have a family history of medullary

Samantha Arceneaux 14:26
thyroid cancer or multiple endo neoplasia type two. Oh, me.

Scott Benner 14:32
So when they're doing this, like warning, and it's literally for like, a handful of people in the world, you're like, Oh,

Speaker 2 14:38
apparently it's I'm one of them. I was like, Man, that would have been nice to have. You know this drug that I could take to lose weight? No,

Scott Benner 14:46
no, can't do that. Do you know why? Why can't a person with so there

Samantha Arceneaux 14:50
are studies that have shown in rats, so it's not a human study that GLP one in rats, they developed medullary thyroid. Answer, jeez. So they're like, we don't even want to risk

Scott Benner 15:03
it. Everyone listening just thinks of those words as a thing that happens at the end of a

Samantha Arceneaux 15:07
commercial. Yeah, yeah. And it's, it's true, like, there are reasons that some people cannot take this, oh

Scott Benner 15:14
my gosh, that's my first question that almost has nothing to do with this. Has this changed your husband's mind?

Samantha Arceneaux 15:21
Well, at first he was in complete denial that I had me into he's like, There's no way. He's like, there, there's no way. So then we did the confirmation testing that came up positive. No, I you know, do they really want to remove your thyroid? Like, but,

Scott Benner 15:36
I mean, does he think the man's coming for him with his information that they're keeping on their computer, or like, yeah, he's,

Samantha Arceneaux 15:43
he's a little bit of, a little bit of a conspiracy theorist, and that, you know, how

Scott Benner 15:48
many beans and a can do you have in your basement? Just tell me that.

Samantha Arceneaux 15:52
Well, I'm in Florida, so we don't have basements, but, you know, we definitely have had some prepping.

Scott Benner 16:00
Listen, I'm laughing. He'll be the only one left alive one deck. But, you know, Wow, isn't that interesting? Well, I'm glad you pushed through all that. Also. You tricked him into going to the thing I thought that was,

Samantha Arceneaux 16:09
I totally did. But you know what? It worked out for the best, because he actually, you know, I was able to push him to go see a doctor, and now he's able to kind of manage his own cholesterol issues, because, lo and behold, guess what? He did have high cholesterol. Tim, it,

Scott Benner 16:26
it occurred to me while you were telling this story as as bizarre as this gonna sound, because I don't mean it this way, but Well, you're the perfect person to have something like this happen to, because you have the brain to pick through

Speaker 2 16:39
this. So that's interesting, because, yeah, the

Scott Benner 16:43
same bit of you that understands all that insurance crap, like figured your way through, am I right? Well,

Samantha Arceneaux 16:51
the thing with the insurance crap is that in order to even get to that level of doing the appeals, I read through so many different research papers. I actually have a degree in clinical psychology, so I've been trained on how to write these types of papers. Granted, it was many years ago, and I definitely could not do that nowadays, but, you know, at least, kind of know how to pick through that and what I'm looking for. So comp, compiling all of that information, kind of like gave me the research on where to find things, how to get the data I need out of it. And so I found one singular paper about my particular codon that I was able to kind of like use. And then I actually the harder part wasn't necessarily even my husband believing, you know, I have this disease. It was getting my endocrinologist on board, believe it or not, how what happened? Because he was just like, Oh, she thinks she has this disease. It was all like, I'm reading the notes, and I'm like, I think I have this I set you the data that's part of his hospital chain, by the way, right? It came from his geneticist, his, you know, Research Institute. And he's like, she thinks she has this disease, and I had to educate him on what tests I needed. And it was just kind of like, okay, he hit

Scott Benner 18:11
you with the doctor chat. GPT over here tells me she has a rare form of like that. Oh, I see, yes, yeah. And

Samantha Arceneaux 18:20
so, you know, I look at things, you know, I don't know if we ever talked on the podcast about zebra diseases. You know, a lot of people label that as there's one particular disease, but it's also kind of a broader term for people who have rare diseases as a zebra. So when Michaela was diagnosed, I was told by her pediatrician to not look for zebras when it's horses, meaning that it was more probable that she was addicted to chocolate milk than had type one at her age, which is crazy, right, right? Because I'm like, she's peeing. She's asking for, now, you know, milk all the time. He's like, no, like, this is very rare at her age. Stop looking. Stop looking for zebras. When it's horses, she's, you know, addicted to chocolate milk. So as a side, you know, I'm very sensitive when it comes to, like, rare diseases, so to speak, and being taken seriously by doctors, because I've had a bad history of people actually taking us seriously, right? Like, you're, you're saying, like, it's not just Google, like, I'm literally being told this by a geneticist. Well,

Scott Benner 19:22
it's funny. It's the phrase they teach it to him in medical school. When you hear hoof beats, think horse is not zebras exactly because it's more likely that it's a horse than a zebra, and that's how they keep them from falling down rabbit holes, when very often times, the most obvious answer is the right one, except when it's not and then your thyroid explodes after you poop yourself and you die. And yeah, can you imagine? Can you imagine the indignity I have diarrhea. I wonder where that's from and gone? Great. Thanks a lot. Literally,

Samantha Arceneaux 19:55
yeah. So the diarrhea is actually caused by an imbalance in the Cal. Level. So the cancer cells cause something called calcitonin to rise, and then that's what kind of starts the process of diarrhea. So they said, as long as, you know, I'm keeping an eye every six months on those levels, you know, as soon as they start rising, then boom, I've got to do a prophylactic thyroidectomy. But

Scott Benner 20:18
so is that how you're gonna roll with it just again till your toilet paper bill goes up. You're just gonna hold on.

Samantha Arceneaux 20:24
No, no, no. They said, by the time the changes start, because I'm monitored every six months, that it would give us enough time you know, before you know it's, you know, be on stage one for sure.

Scott Benner 20:36
Did insurance give you any trouble with the six month thing? Or

Samantha Arceneaux 20:40
Nope. So far, you know me, even if they did, it wouldn't, you would have stopped them by now.

Scott Benner 20:46
Listen, eight years ago, I tried to get Sam to go into business for herself, just helping people with their insurance problems, and we realized there's no way to make a living at that. And I was like, I actually, I remember saying to you, I don't know why a company wouldn't just hire you, because, you know, so many people get blocked by their insurance when they're trying to get a device or a medication or something. I was like, the company should have an office that you go to and say, Hey, I can't get the thing they prescribed to me. Like, help me get through it. Yes, but Yeah, nobody ever picked up on my what I thought was genius idea. No, I

Samantha Arceneaux 21:16
actually, I actually was in talks with Dexcom at one point to do that exact job, but I did not want to relocate to California so that I

Scott Benner 21:25
don't know if you got your husband out of Florida. He might have, he might have gone to the doctor faster.

Unknown Speaker 21:29
Oh my gosh,

Scott Benner 21:30
I know your husband. He's lovely. Yeah,

Samantha Arceneaux 21:33
he's he's Go ahead, don't you don't have to deal. You've been married a while. No, no, we're just gonna stop there. I've been with him a very long time. He's solid. I wouldn't have kept him around if it was all crazy, right? It's

Scott Benner 21:47
excellent. Also, I think this is good for guys to hear, because I think they're wondering now, like, wonder how many things I've done in my life that I thought were my idea, that some lady like got me to do,

Speaker 2 21:57
right? Well, I did tell you I have a psychology degree. Yeah, no, you

Scott Benner 22:02
were like, I'll get in there. Don't worry about it. It's fascinating. Does this fall back to your kids? Like you have more than one kid, right? Yes,

Samantha Arceneaux 22:10
yeah. So basically, at this point they and actually we're starting that process right as we speak. I have the collection kits on my my dining room table. There's a 50% chance that they inherited it. So now that it's, you know, not, it's de novo and me, but now it would be considered hereditary for future generations, so 50% chance. So we're going to submit that, and we should have the results back within a few weeks to know definitively if they are carrying the same gene mutation or not. So is it

Scott Benner 22:41
possible that somebody in your family's had and you guys just didn't know? So,

Samantha Arceneaux 22:45
I mean, there's always the possibility, of course, right? Because, you know, there's going to mean to be deaths in families that occur before this potentially could have,

Scott Benner 22:54
you know, get hit by a car three years before, you would have got fired,

Samantha Arceneaux 22:58
you know, so, but you know, I will say that I had all of my grandparents live, living until, you know, anywhere from 80s to almost 100 and there was literally nothing. And of course, it would had to have come from somebody. So it's like, okay, yes, they could have, technically have it. But you know, my aunts, my uncles there, there's just nobody, nobody.

Scott Benner 23:22
That's interesting. So it's just randomness,

Samantha Arceneaux 23:25
just completely randomness, yes, and then

Scott Benner 23:29
eventually, but once, once you have it, then your kids have, would you say one and one and two chance? Yeah, geez. Okay. How do you explain that to them? Like, how do you like, I mean, first you gotta tell them what's possibly happening to you, obviously. But then how do you how do you tell them, Oh, guess what? Good news. We're gonna give you a test too. Yeah.

Samantha Arceneaux 23:47
So that was actually concern with you know, that I had talked with the pediatric oncology geneticist department about, and they said, listen, until they're 16, they actually don't have to know the results of their test. So they can decide at 16, or they're going to have to be told at 16, I should say. But they don't have to decide now to know if they have it or not. So that was kind of like our little catch all right now. So they know what's going on with me. They know there's a possibility they have it, but they can kind of be in denial land, as far as if they have it or not. And for you know, my Michael is 13, and my younger daughter is 10, so they have a little bit of time to kind of wrap their brains around it and decide,

Scott Benner 24:32
and then are they gonna, if they have children, they'll have to have them tested as well, like this goes on and on. If

Samantha Arceneaux 24:36
they if they are positive, yes, if they're negative, then it won't be a problem for future, their future generations, but if they are positive, then it'll be exactly the same as it was with me, where their kids will have to get tested, although, now that we know they'll be able to have their children tested, you know, before the age of five.

Scott Benner 24:52
Wow, isn't that something? And you figured all that out because your kid got diabetes,

Samantha Arceneaux 24:57
because my kid got diabetes, and. I just happened to be in that room with somebody who was a friend of a friend. It's just like the craziest unrolling of circumstances that you've ever heard of, right? Yeah,

Scott Benner 25:09
otherwise, you go your whole life and you don't know about this, no.

Samantha Arceneaux 25:12
So what if I hadn't been volunteering that day, you know? What if she hadn't been volunteering that day? What if I hadn't been able to get my husband there, you know, because I wouldn't have done it had it not been for dragging my husband there, yeah,

Scott Benner 25:24
Wow, isn't that? So can I ask you now that you, I mean, I think the answer is obvious, but I'd like you to tell people, like, better to know things than not know them, right?

Samantha Arceneaux 25:33
I am definitely on that board, that train of thought. My husband, not so much. He's just kind of like, if I die, I die, right? Well, you're like, No, I would rather know people

Scott Benner 25:44
say that right up until they're dying, and then they think, oh, I should have, like, you know what? I mean, the should have comes out then, like, I get the wanting to be lucky about it, but if it's going to happen anyway, knowing gives you a chance, exactly. And I think that that to me, that's where my brain lies, like I'd rather try something and be you know, it's funny. I think the way I think about life, like the way I break down problems even, is I go to the end of it and then I work it backwards. And so when you do that about health, there's never a situation where not knowing is better, yes, right?

Samantha Arceneaux 26:22
I mean, look at diabetes, you know, like type two. They could go 10 years not knowing that they have it, and then all of a sudden, you know, they're facing all these complications because their blood sugar has been high. And it's kind of like, Man, if I would have known, you know, I would have done things differently. I

Scott Benner 26:38
started out at the beginning of my my GLP life. You know, I started out by telling this story in my diary about meeting this person who has type two diabetes. Was given a GLP. They were losing weight their a 1c went from over 10 down to like, six, like, and they're telling me this story, and I say to them, like, oh, it's amazing. I was like, you know, how long have you been on it now? And they go, so I don't take it anymore. And I went, why? Yeah, like, just told me this long story about how it's saving his life and everything, and he's lost this weight, and he's still, I'm like, I don't, I don't understand, like, so I figured, oh, something must have happened. Must have a reaction or something, or found out that he has medullary or me and two in his life, right? And no, the answer was, I like food and I can't eat my food anymore. And I went, but you're gonna have uncontrolled type two diabetes and die. He goes, I like french fries. I just couldn't figure it out, like, I, you know, I ran it through my mind every way I could, and I was like, Oh, this is a psychological issue. Like, this guy should go to a therapist, you know, like something, you know, I like being strong. I like being able to eat what I want. Like, actually, you know, I No one's ever gonna know who this is. And so I feel comfortable with this but, but describe to me, I like coming home at the end of the day and taking a bag of frozen french fries and making them all and then dipping them in something. I forget what he said. And I was like, Wait, you're gonna die for Alright, of French fries. Like, my God, like, and so I couldn't. Anyway, a year and a half later, I see this person again. He looks at me, and he goes, Man, you look terrific. And I was like, thank you. And he goes, You really, like, how much weight have you lost? I said, just, you know, about 47 pounds, about 50 pounds. Almost 50 pounds. And I said, but my God, let me tell you about all the like, things. Like, I used to have trouble in like, absorbing iron and like, I had to get infusions all the time, but I don't have to do that anymore, and I feel so much better. And like, I said, I'm honestly, this is the best I've ever felt my adult life back, as far as I can remember, on I said, and the truth is, is I, you know, to some degree, have you to thank for it, because, you know, my doctor was talking about, you know, glps a little bit with my daughter, but I never really thought about it for myself. And then you brought it up, and then I started thinking about it more, and then it became more, you know, popular in the zeitgeist, and I paid attention and like, I'm standing here today because I heard about what happened to you, and I did it for myself. I said, How are you doing? Because I don't take it. And I was like, Can I just ask, what's your a 1c? Now he goes, Oh, it's over 10. And I was like, I'm like, but you're gonna die. And he goes, I like being big and strong. And I was like, I don't understand. I was like, you start taking this a year from now, you're going to weigh 75 pounds less. Your a 1c is going to be in the sixes. And the reaction to that statement, he said to me, he goes, I call he didn't use these words, but I correlate strength with size. I don't want to lose weight, Yeah,

Samantha Arceneaux 29:41
he definitely should do some hypnosis or therapy, for sure. Was that

Scott Benner 29:46
not? What's gonna happen to him? He's just gonna get sick, yeah, you know, and it's just, and they said, I take it. So he goes, Well, I do take it once a year. And I'm like, wait, I don't understand. So for. This person's job, I don't want to say what their job is. They can't have an A 1c that's high. So once a year, when they know that the the test is coming up, it pulls the GLP out of the refrigerator and uses it long enough to get his a 1c

Unknown Speaker 30:14
It's like shedding weight before a boxing match, similar

Scott Benner 30:17
situation, right? And then gets the test, and then gets to keep his job for a year, and then goes back to it again. And I just, I didn't know how not to just feel bad for him, but as I'm talking to him, I'm thinking, this can't be the only person who thinks this way, you know. And I just wanted, I just wanted him to have like, five seconds of how I think about it, which is, you go out into the future and you find the day in your life that the thing happens to you, and you work it backwards and see all the things that led up to it, and realize that on this day right now, if you just started doing this, none of these things happen.

Samantha Arceneaux 30:54
Yeah. And I do think, you know, there is quite a difference between mindsets. You know, I'm a very curious type person, so that's kind of evidence with a lot of things in my life, and it just happens to pass along through the health sector. But, you know, you've got, you know, say my husband, he's like, you know, I don't even have time to think about other things outside of my general little bubble, because he's just go, go, go on his daily things, he doesn't have time, so to speak, for the curiosity. But

Scott Benner 31:24
your brain says, you know, when you won't have time when you're dead, because we didn't do this now, right? Like, that's how you think about it, right? I want

Samantha Arceneaux 31:32
to bring up something else too. You know, we were talking about coincidences with diabetes, and this one, I think, will be, you know, along the spectrum of conspiracies. Right by, I love the conspiracy. Go ahead. Yes, so. And part of, part of the whole thing with my husband is he is in the solar energy field. So, you know, he does run across quite a few preppers. And, you know, end of the world tight. So it kind of like fuels that mindset. But he works for, at the time, it was a considered a small company, you know, maybe had 50 employees Max. Out of those 50 employees only, you know, a handful actually had kids during the certain time. So you're talking maybe 15 kids Max, and three of them all aged within a year of each other. So it's three girls who are, you know, within 12 months of age of each other, were all diagnosed with type one. And I was going, you know, what kind of Erin Brockovich situation are we dealing with, that three out of like 15 kids all the same age would be diagnosed with type one. Like, statistically, you're talking one in 400 kids are diagnosed with type one. So you would need, you know, theoretically, 1200 people, 1200 kids, you know, and how many employees? So I'm just sitting there thinking like, Okay, is there something in the water? Is there something in the dirt that was brought in? And it just got me thinking about clusters at type one diagnosis, and I found another one in a city not far from here, where a lady was telling me her son the backyard neighbor, so literally, their backyards touch, and the person who was on the corner, three Boys all diagnosed within six months of each other. And I'm like, Okay, I I'm starting to kind of pick up that there's heavy usage of fertilizers in this general area, both where my husband used to work, as well as the land it used to be orchards and farmland. So I'm like, you know, is there some kind of like thing, you know, Aaron Brockovich, if you're listening, start researching Central Florida, because it's very, very odd to me that so many people are in these little clusters. And I hear it time and time again, specifically related to geographical location that you know, there, there was a school in Georgia that had like, 16 type one seniors at their high school. It's kind of like, what, what is in the water, what is in the land? How could that? That's kind of my tangent. You know, the conspiracy part of me easily

Scott Benner 34:12
get me to think about this, yeah. And you go, Uh huh. This makes sense.

Samantha Arceneaux 34:17
Well, because everybody always says, you know, I don't have family history. I don't know how my kid got this, you know, and it just kind of leads you to, well, what is like, kind of the trigger on this?

Scott Benner 34:29
Oh, my God, listen, I, I have no idea about anything, but I'll tell you right now, if a certain fertilizer was used and it changed people's gut bacteria a certain way, and like, you know, I there's, there's got to be, to your point, like, in the teens, number of people all in the same grade. Come on. You know what I mean? If that's random, then, Boy, that's a weird form of randomness. It definitely should be looked at. How would you not want to look at something like that? Yeah, exactly.

Samantha Arceneaux 35:00
I mean, there are people are always asking, you know, how did my kid get this? And I'm like, Listen, you know, I have a theory. I have a theory. Obviously, genetics do play a portion of the role, but for those people without and it's not just to say type one, it could be, you know, many autoimmune diseases fall under this kind of like difference in how the body's processing their exposure to the environment. Like you said, the gut bacteria or inflammation in general, when you have that situation and it's clustering, I do think that it's kind of like a glaring light, like should be shown on, on the area, yeah, what is in our land?

Scott Benner 35:37
Yeah. Who's doing that? That's the problem, right? Who are you going to get to get that get that one accomplished? It's easy. When you look and you're like, Oh, my dad has a thyroid thing, and there's a type one uncle and like, and then my he married my mom, and my mom has celiac and like, but, you know? And they go, Okay, well, that makes sense, right? You know? But yeah, to your other point is, like, Where does all that start? Why are there so many autoimmune issues? Why do they grow over time like this? It's got to be environmental to some degree. Yeah.

Samantha Arceneaux 36:07
I mean, you know, a lot of people point out, oh, you know, the vaccine loads are higher than they used to be, and that's why we have so many more instances of, you know, auto immune. And I'm, I'm thinking like, I'm not discounting, you know, anything, but I do think that it is very much more probable that it's something inflammation wise, or, you know, getting absorbed, you know, some kind of, you know, they, they're talking about how many, you know, plastics are, even in our waters and stuff. So just something along those lines, entering the body, causing a shift in how the body reacts.

Scott Benner 36:40
Well, I can tell you what chat GPT said, no, no. It said, I said, are auto immune issues increasing in the US? It says, Yes, auto immune issues appear to be increasing in the United States as well in other parts of the world, for reasons. The reasons for this rise are not entirely clear, but several factors are believed to contribute to the trend improve diagnostics and awareness. So advances in medical diagnostics and greater awareness among healthcare providers have led to more frequent identification that makes sense environmental factors, exposure to environmental toxins, pollutants and chemicals have been hypothesized to trigger auto immune responses in genetically predisposed individuals, factors such as pollution, industrial chemicals and heavy metals, may disrupt immune function. Hygiene hypothesis, this is in quotes, is suggest that the reduced exposure to infectious agents due to improved sanitation and medical practices may lead to an underdeveloped immune system. The lack of exposure may cause the immune system to become overactive and mistakenly attack the body's own tissue. I've heard that have Possibly, yeah, the George, that's the George Carlin joke, right? I used to, I used to swim in the East River with like, needles and poop. And, you know, I have never been sick a day in my life. He did die of cancer. Eventually, I think diet and lifestyle changes, modern diets high in processed food, sugar and unhealthy fats, along with sedentary lifestyles, have been linked to inflammation and immune system dysfunction. The gut microbiome, which plays a key role in immune regulation, can be disrupted by poor diet, leading to an increased risk of autoimmune disease, genetic factors, increased stress level, and then the last one says vaccination and immune modulation. Some researchers have explored the idea that vaccines and other immune modulating treatments may contribute to the development of autoimmune diseases in susceptible individuals. Yes, though, this remains a controversial and complex area of study with mixed findings. So I mean, these are just like you know, the theories that chat GPT can find it says examples of autoimmune diseases on the rise are celiac disease, MS, Ra and type one diabetes.

Samantha Arceneaux 38:48
So yeah, I mean, and you know that it doesn't have to be necessarily even one certain answer, but you know if, if someone out there is looking to study Come, come to Central Florida, and we can kind of narrow that environmental went down. It

Scott Benner 39:02
will point you to a patch of dirt.

Speaker 2 39:03
I'll give you a couple streets. I'll give you a couple of streets to go test, right?

Scott Benner 39:07
That's like, they, when they would, you know, they put up, like, those high tension power lines. Then people started getting, like, cancer, certain kind of cancers, yeah. And then people are like, I think everybody living on the street has brain cancer. That's got to be a thing, right? And then they figured out that, oh yeah, we shouldn't have done that. And

Samantha Arceneaux 39:24
yes, I mean, there was even with my husband, had a brother who was born with gastroschisis, so basically his intestines were born outside of his abdomen, and he was a cluster, you know, it was on a military base in the the southeast. I won't get into specifics, but it was back in the 70s, and there was like every single baby was born within a certain time period with gastroschisis, and they all died. You know, it's definitely there's environmental things that can wreak havoc on your body. Yeah, yeah, don't

Scott Benner 39:54
google burn pits for God's sakes. I

Samantha Arceneaux 39:56
know I unfortunately have, because my brother is military. So I made that mistake years ago, when he was overseas and learned things I did not want to know about the risk. Jon

Scott Benner 40:05
Stewart tried really hard to shine a light on that last year. I think I remember about the military burn pits. Yes, it's awful. Yeah, when fighting desert wars, we throw our garbage into a pile and light it on fire with jet fuel. Yes, yeah. So including all

Samantha Arceneaux 40:22
of those plastics, you know, like everything gets burned. So imagine inhaling that along with jet fuel, yeah, and what that does to your body.

Scott Benner 40:30
Guys would describe women too, right? That just the wind would shift, and then that would just roll back on their encampment, and then they were all standing in it. So, yes, yeah. I mean, listen, I don't want to say obviously, but obviously there's Yeah. How many people I don't even know the Listen, I don't know the possible science behind this, one way or the other. But how many people grab a plastic bottle of water, put it in their car, leave it in their car. Their car heats up to 150 degrees in the summertime, day after day, and then one day you're stuck and you drink that bottle of water. Like, is that okay? Like, you know what I mean. So

Samantha Arceneaux 41:07
I am kind of a germaphobe, I will say. So I actually will not do that, and have taught my kids not to do that, because I am so, like, worried about the leeching of the plastic into the water. I'm

Scott Benner 41:21
with you. Don't get it. I try over and over again in my life, I tell people I'm like, I don't think we should be drinking out of plastic. I don't think we should be microwaving plastic. I think that it's a simple little thing, and I don't know that in my lifetime, I'm going to be able to prove it to you that it's a good thing. We didn't do it, but I don't think we should do it. I don't think you should cook on a pan that has the non stick, the non stick stuff. I don't think you should do that. I think take a nice metal, stainless steel pan, light it on fire, put a little butter in it and cook, you know, don't spray. I don't want to use a name, but don't spray a non stick. Spray on your pan. I think it has silicone in it. Don't do that, you know, like, so it's everywhere, right? Like, and is that the price to pay for a modern society? Like, you know what I mean? Like, if we were all growing food out back, we wouldn't have a lot of the things we have. And I don't, I don't know. Is that a bad trade off? A good trade off? Well,

Samantha Arceneaux 42:19
you know, they're talking about singularity. I don't know if you read the news the other day, there was a thing about a theory in the 2045 ish, I'm going to be off by potentially a decade, but they're calling it singularity, which is basically where humans merge with some kind of technology, whether it's nanobots helping, you know, to improve the bodily functions, or, you know, implants, they're predicting by, you know, within 20 years or so, that we will be gaining, or at least leveling off for every bad year that we're going, kind of like towards death. It's going to reverse that, or at least keep it.

Scott Benner 42:59
How long do I have to stay alive. What'd you just say? Yeah. So

Samantha Arceneaux 43:02
basically, within 20 years, they're saying that technology will improve to such a degree that it will allow it to meld with us at some point, to extend our life or keep us from dying an early death. I should say, Oh

Scott Benner 43:17
no, listen. And isn't it interesting? Because if you let's say that happens. Let's say that one day there's a Jetsons pill you take, and a bunch of little robots jump inside of your body, do all the things that you figured out with genetic testing, and then come back and write a report and go give her this, this, this, this, take that out. She's gonna live to 150 if you look back on that, 500 years from now, you're gonna say, well, it was worth it, right? Like it was, it was worth what we went through to modernize technology to the point where we came up with this thing. And yes, there was 150 years in the middle where people's joints hurt and a lot of them got type one diabetes and but that don't help you today. Like, that's not a story I can tell my kid. Hey, you know what I mean, don't worry, because hundreds of years from now, people you've never met before are never even going to be sick, and she's going to be like, Yeah, well, I got to take insulin for food. So call that. But

Samantha Arceneaux 44:09
they're, they're claiming it could be as soon as 20 years. I said it, it was like a once the computers had, like, a trillion, and I'm going to slaughter because I know nothing about computer technology, but trillion basically, like thoughts per second. That was the time frame of when technology will really ramp up. And they believe that will happen, yeah, within the next 20 years.

Scott Benner 44:31
Well, listen, I mean, we're not in the infancy of it right now, but it's just starting to really blow up.

Samantha Arceneaux 44:38
I mean, we already have smart insulin on the way. You know, I

Scott Benner 44:40
saw a news report about that again, that there people are looking at that again. Yeah,

Samantha Arceneaux 44:45
it's down, down that rabbit hole that, you know, not that it's a bad thing. You know, we're already starting to see the the beginnings of that.

Scott Benner 44:53
Sam, if you saw the minimal amount of words I put into chat. GPT four, oh, to help me with, like. Conversation with you today. I typed familial hypo cholester Emmy. And so I just, I didn't ask it a question. I just typed it in and it gave me an overview of it. Then later, you said, r, e, t gene. I typed ret gene. I have a breakdown of that. I couldn't remember the saying about doctors and zebras. I said, What's that saying doctors use about zebras and please, the phrase is commonly used in medical training and practice to remind doctors to consider the most common and likely diagnosed first, rather than jumping to rare or exotic conditions. And there's more. I typed our autoimmune issues increasing in the US, and I got everything that we just talked about. It's astonishing at the level it's at now, and when it can start identifying a problem and then giving you an answer to it, you know, as long as nobody types in, shall we play a game? I think this is going to work out really well for us, which is a joke I used in another episode with Jenny. And she's like, I don't know what you're talking about. I'm like, Jenny, you've never seen war games, you know? I know there's a lot to be concerned about, and there's probably people listening like, AI is going to kill us all. Your husband's probably listening going, I got beans in a can. We're going to be okay, by the way. How long to be watch this. How long can beans stay fresh when canned, canned beans can stay fresh for a long time, if stored properly. Here's a breakdown shelf life of canned beans. I can write a report on it. Now, from that anyway, my point is I know that AI is scary and I know that there's a possibility it's going to go the wrong way, but I choose hope. And what Sam is saying is not crazy, like it is not crazy to think that one day you'd be able to just say, here's who I am genetically. Tell me how to stay alive longer. You know, you know, and that you might end up with an answer and but people are like, I don't want to be paired with a robot. Your phone is already you're already paired with a computer. Don't worry. You know what? I mean, like, Wouldn't it be nice not to carry it around?

Samantha Arceneaux 47:00
I mean, could you imagine, you know, even 20 years ago, having, you know, the internet at our fingertips, you know, it's, you know, we had a pager where we would, you know, write 8008, to spell out a words, or 3003

Scott Benner 47:15
so I went back home recently where I grew up, and people who listened long enough might Know that I was a volunteer fireman for some years when I was a teenager, and the firehouse, before paging equipment, had an air raid siren on the top of it, and the town was so big that it spun so that the noise would get shot around, so that firemen would hear that and go to the firehouse right And because it's also an air raid siren. Apparently, they never shut it off, even after technology came. So I was sitting there the other day, and I'm like, Oh my God, that noise. I haven't heard that in years. And it's this air raid siren going off telling firemen, like, come, come to the firehouse. And I said out loud, I'm like, why are they doing that now? Like, there's pagers, like, there's and then I went, what am I saying? It's probably an app on their phone now, yeah, like, I was thinking of how, like, when I was younger, they were like, Oh, we're gonna give you a page and we used to carry this brick on our side in case, and it would beep, and you'd go to the firehouse. And then I started talking about, like, I sound so old, there's pagers, pagers, there's an app. I mean, there's,

Samantha Arceneaux 48:20
there's probably a generation listening Scott right now, who don't know what a pager even looks like. Thanks. Oh,

Scott Benner 48:26
and why would they? How would they know that my first cell phone came in a nylon bag, it had a cord on it, and I plugged into my cigarette lighter in my car. Except those people don't have cigarette lighters in their car, so they don't even know what I'm talking about when I say that, you know.

Samantha Arceneaux 48:39
And honestly, you had to be rich to be able to have a car phone. I mean, that was like, Epitome, you've made it if you had a car phone. Can

Scott Benner 48:48
I tell you how I scammed that? I was friends with a bunch of cops, and they got a deal for the phones, and I got in on that. Of course, you did. You got to know

Samantha Arceneaux 48:59
somebody. You gotta know somebody. You

Scott Benner 49:00
gotta know somebody. So I had the phone Place Right Time. Phone was free, and I can still picture it and but I never used it. It was literally an emergency device, because a phone call cost 99 cents for 60 seconds. So nobody used them. They just had them. It was ridiculous, but, but it makes the I hope people understand that this conversation makes the point like, you got to do the thing so you can improve on the thing, so you can get to the point where it's now. I mean, what do they say? My iPhone has more computing power than what we shot. Like the guy said to the moon, I've heard that. And we all have more access to information than the President had in the 80s. Do you know more about the world right now than Ronald Reagan knew when he was the president of the United States?

Samantha Arceneaux 49:51
That's insane. Yeah. I mean, and I grew up in that generation. You know, they call my generation like the xennial. So I'm kind of stuck between an ex Gen X and. Millennial, where you know that that was our first thing. I had the encyclopedias at home and but then I also was able to have internet at one point and in my high school. So

Scott Benner 50:09
yeah, now, I mean, there was a world where an encyclopedia, my mom and dad bought a set of encyclopedias on a layaway plan. We'd get one book like every they were expensive. They

Samantha Arceneaux 50:19
were like, five, $600 for a set of knowledge. Basically, like, yeah, otherwise you had to go to the library. So

Scott Benner 50:27
the library, yeah, when I was a kid, I was allowed to use I was one of the few kids in my class that was allowed to use the Dewey Decimal System, like the card catalog, yeah, I understood how to use it. And the librarian was like, you can use it. They can't. I was like, yeah. Dum, meanwhile, I've read like, three books on my entire

Samantha Arceneaux 50:47
Oh, no. I'm a big bibliophile, so I love books, but now they're all in my Kindle, so I don't have to go out of my house to acquire them. I saw

Scott Benner 50:58
a lady floating in the ocean with a kindle the other day.

Speaker 2 51:02
You know, I don't blame her. If I had the waterproof version, I would too. I was

Scott Benner 51:06
very impressed. She's out there just reading. I'm like baking. I'm still flaking all over the place, by the way. Oh, Scott,

Samantha Arceneaux 51:13
I had one more circumstance, and I want to get your opinion while we're still on. So I have another theory, right? It was obviously, is age subjective, because my daughter was diagnosed at 22 months, but she was sick on Christmas Day. She ended up being diagnosed in March, so you're playing with about three months there, and she was 18 months old at Christmas time, she got sick. And I immediately started noticing, like her energy started going down, meaning she didn't necessarily want to go up and down the stairs by herself before she would just fly up the stairs fly down. Now she was more cautious. Didn't really want to go up them. She wasn't having the language explosion that they always say 18 month olds have where they're gaining, you know, a word a week or so, or even a couple words per week. Just those are the steps the pediatrician says will developmentally happen with kids that age. She wasn't progressing, she would have maybe one new word a month. You know, you're talking about three words in the time between Christmas and the end of March, the day she was diagnosed, and we were introduced to insulin at the hospital. Scott, I kid you not, she had three new words in one day. And so I go back, and I'm like, you know, thinking about it, I do think type one diabetes had a huge role and a developmental delay, you know, not so far as to this could be a symptom. But it does make me question, if someone is seeing kind of those reversals or stationary kind of growth in their kid, is this something related to sugar? Is it because she did not have the insulin unlocking those cells to cause, you know, this action of learning new words in the brain. She just did not have enough energy to do that, because she was focused so much on the actual physical energy, those gross motor skills, that she didn't gain the developmental portion of learning the, you know, the words. So just kind of like throwing it out there to see if you've heard this before. Is this a new theory?

Scott Benner 53:24
Well, I've never heard anybody say that, but it made a lot of sense to me, and of course, I went to my overlord and

Unknown Speaker 53:32
CBT. What did they say about it?

Scott Benner 53:35
It could. My question was, can undiagnosed type one diabetes impact a child's development prior to the introduction of insulin says yes, and here are the ways growth delays, poor nutrition utilization, muscle wasting, pretty obvious, but cognitive and neurological effects, hyperglycemia, high blood sugars, prolonged high blood sugar can affect brain development and function. Cognitive impairments, such as difficulties with memory, attention and learning may occur.

Samantha Arceneaux 54:02
Ah, okay, maybe they pulled that from my blog from yours ago. Not

Scott Benner 54:07
funny. It wouldn't it be great if, like, learn

Unknown Speaker 54:09
it somewhere. Hold

Scott Benner 54:10
on a second. Watch this. I'm gonna copy that, paste it and say, Where did you get this specific passage?

Speaker 2 54:20
They're like the defunct blog says it's general

Scott Benner 54:23
medical knowledge and understanding of effects of prolong hyperglycemia, cognitive function. Sources information include medical textbooks, reviews, clinical studies, guidelines from health organizations like so, you know, it's funny. I have an episode called, what is it called? I have an episode about this because it is a thing that, generally speaking, people don't believe. I used to say a lot more when I was younger, when I was younger, when the podcast was younger, I would say, I want my daughter's blood sugar to be low, normal and stable, so that she can be the person she's meant to be, because higher blood sugars impair you. Yeah. And do you have any idea how many people write and go, you don't know what you're talking about. That doesn't

Samantha Arceneaux 55:04
happen. I mean, you know how many research studies I've witnessed? You know, at the time that this was going on, and I had my hypothesis, there was really only one or two studies out there, and they were all talking about, after diagnosis, what is the effect of hyperglycemia on the brain, you know, MRI studies, or CAT scan studies about the changes in the brain when it's constantly exposed to hyperglycemic, you know, events, or, you know, just the ongoing high blood sugar trend. So, you know, I've never really seen anything that addresses the before diabetes diagnosis, because nobody pays attention to that stuff, because nobody pays attention. So I'm going, you know, think for those people who are listening, and they had kids who are diagnosed around that 18 to 22, to 24 month period when they're supposed to be learning or, you know, it might not even be that they were having mental blocks, because my kid was very energy focused on the physical so it could be reversed. Maybe they're learning the words, but then they're not progressing the way that they should, with walking or, you know, doing those gross motor skills. You know, they're only having a certain amount of energy. Where is that energy getting expended?

Scott Benner 56:18
I just listened to Mark Cuban the other day, talking about the that pharmacy business he started, and he was talking about one of the ways it got like he he had the idea, and I forget what it contextually. It's not important. But what he said was he realized, when he saw that, remember that guy that put that cancer drug price up and he got thrown in jail. I don't remember his name.

Samantha Arceneaux 56:40
Oh yeah. The younger guy, I

Scott Benner 56:41
remember right, but when he Cuban said, I'm gonna get this mostly right, he said that when he saw that somebody could just wildly change the price of something, and that it was just okay for so long, what it made him think was nobody knows what's happening. This entity exists, but nobody really understands it well.

Samantha Arceneaux 57:02
That's because PBMs are shrouded in mystery themselves. Nobody can even tell you what a PBM does these days, right? And they're huge drivers of the cost of our medication. So, you know, you shroud the whole process in mystery. And really, it comes down to money making businesses money. They don't want you to know that they're making money hand over fist, right?

Scott Benner 57:22
Yeah, exactly. But his point was so, so much, I expanded on it my head, which is, how many things do we all do every day? You don't even know why you're doing it. It just happens, and maybe there are some people taking advantage of it. But what about the situations when nobody's paying attention, but nobody says anything, because it all just sort of seems okay. I feel like that's what you're talking about. Like maybe nobody talks about developmental delays with undiagnosed kids who will eventually have type one, because they don't know what's happening. And then once they know they have type one, the focus isn't on looking for that sooner and other people. The focus is, well, let's fix it now for this kid, because now we have a diagnosis. But you know, going back to my original point about this episode, 485, it's called altered minds. We had to make an episode about it because so few people believed that vacillating or high blood sugars could change, it could impair you. They're willing to believe if you're low, you're impaired, but not if you're high. It

Samantha Arceneaux 58:22
is definitely both, and the research is out there, so I don't know why this is such a controversial thing, for these people to write in and tell you you don't know what you're talking or for

Scott Benner 58:33
the same reason, your husband doesn't want to go to the

Samantha Arceneaux 58:35
doctor, right? Well, he's just in denial land. But you know, people with

Scott Benner 58:39
type one diabetes don't want to think like something that I'm trying so hard to handle and maybe isn't going the way I want to is now impacting like the words coming out of my mouth, or my ability to understand something, or the way I saw it originally with Arden, which was if her blood sugar got much over 180 she literally slowed down when she was running. Her foot speed decreased. Yep, it was one of the first things that I recognized when she was playing softball, is like, Oh, if I let her blood sugar get too high, she can't perform well.

Samantha Arceneaux 59:06
And I've heard the same thing. And when my daughter's blood sugar is high or low, she says, you know, my knees don't work. And you know, that was, that was her explanation when she was little, my knees don't work.

Scott Benner 59:18
Yeah. So I'm just saying stability, low and stable, not low, too low, but low and like normal and stable gives you the best chance to be who you are, and to expand on that further, and to kind of shine a light back on what you were saying. What else is happening to you when that glucose is in there that doesn't belong there, exactly right? Just because these are the things we see doesn't mean these are the only things that are happening. It's

Samantha Arceneaux 59:42
incredible the amount of knowledge we have versus what is still out there to be learned. I think that's it. Yeah, that's overview of this episode, right? Like the things we don't know.

Scott Benner 59:54
Well, then we'll just put the nanobots in.

Samantha Arceneaux 59:56
I wish, right? Can they take my thyroid out for. Me too, so I don't have to go through surgery,

Scott Benner 1:00:02
I would imagine. So one day they'll just, they'll send in a nanobot with a with a knife. It'll just

Unknown Speaker 1:00:09
exactly, oh, man, I wish. Do you want

Scott Benner 1:00:12
to know what the current state of nanobots medicine is? Sure, nanobots are being developed for various medical applications, including targeted drug delivery, minimally invasive surgery and diagnostics. However, these applications are mostly in the experimental phases or in early clinical trials. Some research has focused on creating nano scale sensors that can detect biomarkers of diseases within the body, such as cancer cells, pathogens or even specific genetic mutations. These sensors are designed to provide real time data and may eventually be integrated into nanobots for an in body diagnostic goes on talks about, I mean, they're,

Samantha Arceneaux 1:00:49
they're doing the diagnostic too. I mean, think about, you know, colonoscopy, or, you know, those types of procedures where they're just sending in, you know, cameras or or or bots, basically through your gastro system in order to see what's going on. I

Scott Benner 1:01:06
swallowed a camera when my iron was low, when I originally finally figured out that my iron was so low. When you're an adult and there's no bleeding, they think you have cancer if you have low iron, that's the first step, right? So I went to the doctor. And he goes, Okay, you know, take this with you. It's all charged up. Keep it with you all day. Wear it on your hip. I forget what it you know, is like the train is like, catching the signal of the video. And he's like, and right in front of me, take this pill. And I was like, What is this? He goes, it's a camera. So I swallowed the camera, and then it took images as it went through my system, and then they reviewed them.

Speaker 2 1:01:40
I mean, that is a very intimate procedure.

Scott Benner 1:01:43
Let me tell you. I said, What? What happens, actually, you know what? I said, I was screwing around, yeah. How does it come out? I go, like, do you want it back? And he goes, No, no, it's okay. When you're done with it, let it go where it goes. And I was like, gotcha. But yeah, just really, I mean, that's that, is this just in today's technology. It says, near future, five to 10 years, we'll see the first generations of nanobots, or nano scale devices used in specific controlled environments, such as cancer treatment or for targeted drug delivery. Midterm 2010, to 20 years, more advanced than about capabilities performing complex diagnostic tasks inside the body may begin to see broader clinical use, and 20 plus years they're hoping for fully autonomous diagnostic nanobots capable of navigating the body.

Samantha Arceneaux 1:02:29
What do you think will come first, Scott, the cure for type one, or the nanobots that cure pretty much everything?

Scott Benner 1:02:35
I Yeah, right. Well, you know, if you want to be cynical, or if I was gonna be your husband, what I would say is, if they know these nanobots are coming 30 years from now, why are they gonna be busy worrying about curing something that 30 years from now the nanobots gonna cure anyway?

Samantha Arceneaux 1:02:50
Well, I mean, there's a whole sector, you know, I hear it repetitively that there's the whole sector of people who believe there are already cures for many, many things, and that it's financially, not to the company's interest, you know, to release it so, you know, it's,

Scott Benner 1:03:06
I don't know, like, also, I think that light you ever heard the light bulb story is the GE story about The patent,

Unknown Speaker 1:03:15
or the light bulb. Oh,

Samantha Arceneaux 1:03:21
you mean Edison versus burnout, yeah, so that, you know, I grew up in Fort Myers, where Thomas Edison used to have a winter house, and that was, you know, a highly regarded story where he had a worker who actually invented something, you know, either the filament or parts that had the light bulb work. And Edison took the credit for it, and it might have even been Tesla. I'm trying to remember who there was somebody else, and Edison took the credit, supposedly.

Scott Benner 1:03:49
So that's not the story I was thinking of, and chat GPT knew exactly what I was thinking of, and says it's a myth, an urban legend, but the way I heard it, growing up, when it's a conspiracy theory, there was this guy. He came up with a light bulb that won't burn out. He went to GE and said, I've developed the light bulb that will never burn out. Is revolutionary. And they said, We want to buy it. Bring it in, bring all of your work, etc. They brought him into a room. Said, this is these are all your samples, yes. This is all your data, yes. And they paid him for it and burned it all up in front of him. That's the story I heard growing up. But that story, which I'm not the only one that heard, because chat GPT knew it immediately said, it says that it's an urban legend, so, but I think that kind of stuff gets it into people's heads. I believe that if there was a cure to something, we would know about it. And I go on the theory that people can't keep their goddamn mouth shut. So if somebody, especially in a world of social media, somebody would know and be like, I'm gonna be famous for this. And they and they, they'd spill the beans unless that's true, yeah, and you can't pay everybody off get an Amy. You. But is it,

Samantha Arceneaux 1:05:01
I wonder, though, too. So, you know, I don't know if you know this based on, you know, monitoring the Facebook groups, but obviously you've heard of the Fauci lab, and my daughter was actually part of that study. And it's kind of fascinating when you're looking at, you know, the roadblocks that have kind of come from these studies, where it's like you maybe we could get to some, and I won't say a full cure, but a functional cure, if only there was more funding available. Where? Where does funding typically come from? Companies who are looking to purchase, you know, the patent so they can make money one day. So when you're using something that could also be used for something else, meaning someone's already made the money on it, then suddenly they're not interested. So, you know, it makes me wonder, what do we already have that could be applied to other things, but nobody's looking for those things, because it does not make those people money in that

Scott Benner 1:05:54
moment. Yeah, like, like, maybe even, like, not using Dr Fauci as an example, but maybe they started on one idea, and it didn't really work out like that, but it does have other applications, but people can't figure out how to make money with the application, so nobody funds

Speaker 2 1:06:07
it exactly. It's just, you know, what

Scott Benner 1:06:10
did you do with that study? What? What did you learn about it? So,

Samantha Arceneaux 1:06:15
so basically, I went in and I wasn't quite sure, you know how it worked. I just heard, you know, the the results from the adults were really, really positive. It was showing that there's lower glycemic variability for the people who had gotten the real thing versus the placebo. They were using less insulin, lower a, 1c, when I talked to Dr Fauci, it was very much like we are teaching white blood cells to basically eat sugar, instead of needing the beta cells to do that job. So therefore, it avoids autoimmune, you know, that autoimmune response, because it's not the beta cells being attacked. It's just, you know, kind of like a workaround. So more of a functional, I won't say the cure word, but, you know, a functional treatment in order to not have the same amount of insulin needs. So it's really fascinating, and it's all from the BCG vaccine, which has been, you know, given to billions of people around the world. So then the next question is, you know, well, why aren't, you know, people preventing diabetes, then, if they're getting these vaccines, but it's a very specific dose, a very specific strain. But the problem is, it only costs $1 you know, per dose. So what incentive is there for, you know, companies to pick this up, so to speak. Did your daughter do it? So, yeah, she's currently, it's a five year study, so they actually don't tell you if you get the placebo versus the real thing. So we won't know that she is going to Boston and she's, we're, I've been to Boston twice, and we're going back at the end of the month. So it's a really fascinating, fascinating study, the

Scott Benner 1:07:47
process in general, yeah, yeah. I had her on once, and I thought it was interesting. I mean, she's using what the BCG vaccine, tuberculosis, right, right? Yes. I was like, All right, cool, but I haven't really heard anything, and I'm also, I'm a little cynical too, because it's easy to be right. When my kid was first diagnosed, I had the same experience that so many people have, right. Like you, you flip on the news one day, or you jump online and you see that they've cured a mouse of type one diabetes. And you think, that's it. It's over, yeah, five years, right? Yes, until you realize that you know what works on a mouse doesn't work on a person, but you don't know that because you've never been around disease before, is maybe your first time, because your kid just, you just got diagnosed, or whatever. And I remember, I went to my wife like an idiot. I was like, oh my god, I can't believe we're so lucky. Arden was diagnosed with type one diabetes just a year before they're going to cure it, because that's how it felt. And now I refer now you Scott, yeah, and now I refer to that time as, now I realize that these labs need funding, so they all dump their, whatever they have, out into the news. This press release is hoping to get more funding. And now I call that cure season. Really

Samantha Arceneaux 1:08:59
does boil down to you, you know, trying to get your best foot forward in order to get money. This is a study when Michaela was first diagnosed. So she's been diagnosed for 11 years now. This was one of the first studies I had ever heard of where I was like, Oh my gosh, there could be, you know, a cure or something that makes her not have to take insulin. And then it was just like, dragging out so long because of the funding, so they're just now into pediatric trials. The good thing is, it's for people who've been diagnosed for a long time, so we didn't kind of miss the window that so many other studies have, which is recent diagnosis, because she has, well, sailed past that threshold. That was kind of my thought processes, you know, and getting my husband on board, honestly, you know now that I've kind of shared some of this conspiracy, obviously, he's not a huge vaccine proponent, but I was like, Listen, this one has been around over 100 years. You know, it's given to billions of babies, you know, around the world, the most well studied vaccine. So at the very least, she's protected against tuberculosis. My

Scott Benner 1:10:00
kids definitely not getting tuberculosis. Yeah, it's, it's very nice you to support research like that. That's awesome. Yeah, really. And nice of your daughter too, because the travel involved, and

Samantha Arceneaux 1:10:10
yes, the travel has been a little difficult. But, you know, she does want, she actually wants to go into the medical field in the future. She wants to be a nurse practitioner. So this is kind of right on that mindset of very curious, she kind of obviously got that one for me, not my husband. So very curious mind. What should

Scott Benner 1:10:28
we call this episode, Bigfoot aliens and diabetes, something like that? Well,

Samantha Arceneaux 1:10:33
I mean, like I said, you know, how many people can say type one diabetes saved my life and other odd coincidences,

Scott Benner 1:10:39
and other god coincidences. That's great. Yeah and Bigfoot. I'm gonna write at the end, yeah and Bigfoot? Yeah, that's awesome. I'm enjoying talking to you so much. We're gonna see each other soon, right? Yes, we

Samantha Arceneaux 1:10:49
will touch by type. One has their annual conference next month in September here in Orlando, so as usual, you're one of our highlighted speakers.

Scott Benner 1:10:58
It's gonna be fun. I got told to stop talking about it, because, I guess they sold there

Samantha Arceneaux 1:11:02
is the registration is closed. Yes, we're over 500 500 registered. It's

Scott Benner 1:11:07
free, but, like, at the same time, but at the same time, like, you have to register, you know, to do it. And I was like, you know, I mean touch by type, one buys ads on the podcast, and so in the ads for a while. I was like, hey, like, you know, I'm going to be speaking with this thing. Like, go do it. And I got a note one day from somebody, and they were like, Stop, yes, yes,

Samantha Arceneaux 1:11:25
no, we are fully, you know, we have, we do have a wait list. But even the wait list is kind of lengthy at this point, so, and it's at a beautiful, beautiful conference center, the JW Marriott, here in Orlando. So you know, if I was looking for a conference that would be a fun day for me. Well,

Scott Benner 1:11:44
I'll go out on a limb here and say a thing that it may be six months from now when this comes out, people will be like, I wonder if that's really going to happen. And I don't really know for sure, but Elizabeth and I have been talking about touch by type one setting up me speaking at other places in the country. So I have

Speaker 2 1:12:00
heard I've had, they've been talking about that, yes.

Scott Benner 1:12:05
So hopefully she and I had a conversation. She's like, I could facilitate that. I was like, really? And I was like, Cool. I was like, I don't want to charge people like, you know, like, how do we do this? So she's looking into it, and I was really excited. So I think she's trying to get one in, like, the first one in Philadelphia, maybe.

Samantha Arceneaux 1:12:20
Okay, I know they were trying to, like, figure out where good places might be. So yeah, and I believe there was, did you put a poll on one time recently

Scott Benner 1:12:31
to give her cities to look at? Yes, I

Unknown Speaker 1:12:36
did see that that

Scott Benner 1:12:37
was really cool. Like, it's very good for your ego when you're like, where should I go? And like, you know, you come back a day later, and there's just 1000s of responses like, Oh, it's so nice. Yeah, it looks like Philly, because I can drive to it and, you know, as a test, as a testing and she actually said to me, like, she's like, Could you speak at the Kimmel center? And I was like, Could I I'm like, I'm gonna have somebody mention that at my funeral if that happens. I was like,

Speaker 2 1:13:00
I'm not familiar with Philly, but I'm assuming that's a fairly big center. Yeah, I

Scott Benner 1:13:04
was like, Yes, please. Can we dig my mom up so I can tell her? Well, that's

Samantha Arceneaux 1:13:08
the thing you know. You know at the conference, unfortunately, I am one of the speakers who ends up yearly as someone against your time slot. And I will tell you, it's no fun having to have a time slot opposite you, because you definitely draw the crowd. So I can only imagine, you know, going into a new area, the amount of people that would be, I hope registering to see you. I

Scott Benner 1:13:31
hope so. And also nice of you to tell that story, because when I tell it, I sound like I'm bragging. Actually, there's a short list of people I have that are still angry at me because they flew somewhere to speak, and their slot got put against mine, and then like three people went into their room to listen to them talk. Yeah, like

Samantha Arceneaux 1:13:48
you thankfully, you know I'm my ego is not going to be hurt. You know, I'm there, regardless of whether I'm speaking or not. So, yeah,

Scott Benner 1:13:58
well, other people's egos have been hurt, and they've spent a lifetime trying to me because of it. So, oh no, yeah, those people are not pleasant. That's a different story. Thank you for doing this. This was terrific. I don't know I should have you on more often. You're very natural at this.

Samantha Arceneaux 1:14:12
Thank you. Yeah. I mean, I think we've been trying to schedule this since last conference, September of 2023 and right now, as we're recording. It's August 2024 so you're a busy, busy man.

Scott Benner 1:14:24
Well, no, also your family is very busy digging a tunnel from Orlando to Cuba. It takes a lot of

Speaker 2 1:14:30
time. Oh man, let me tell you, it wouldn't be Cuba. I'll tell you that I

Scott Benner 1:14:35
would love to interview your husband. I'd be like, tell me what's gonna happen when they come for us, and just let him talk.

Samantha Arceneaux 1:14:39
Oh man, he's, yeah, I won't say he's off the deep end, because, you know, I do spend a lot of time reeling him back in too. But I will say it has been very difficult with the amount of fake news and in the media or online to kind of like, go through that mental, analytical process with him. Of like, is. Do you really believe this, or is this something someone is posting? Because anybody can post anything versus, you know, like, you gotta, like, use your brain and just don't look at something and take it at face value.

Scott Benner 1:15:11
I watched the thing happen to one of my kids the other day. I don't even want to say which one, right? They have a certain a political belief, and came and said something to me. I said, Oh, that sounds weird, like that doesn't sound quite right. I spent a little time to like I dug in and around it, and what I found out was, is that the thing they heard about another person. So just imagine there are three people in this conversation. They heard a thing about the second person that was designed to make the second person look bad. And it turned out that the third person floated that story to make the first person look stupid for believing it. And like, once you, like, realize that that's the level of like, shithead chest that's going on, right? I was like, see, you believed a thing that is not true. Yeah. And if I gave you a day to figure out why someone made up that lie, you would not have come up with the actual answer. Like your brain would have started going, Oh, it's probably because of this and this and this. But it wasn't. It was for a completely different reason that you would have no way to understand. It's really fast.

Samantha Arceneaux 1:16:21
That's just it. You know, one of my things is, you know, not only do I have the clinical psychology degree, I also have a degree in marketing and sales. Because apparently, that's what I did, was just go to college for a bunch of random things. So, you know, in marketing, that's, that's like, the the 101, you have to capture their attention. You have to, like, really, if you're not selling something, you have to dissuade people from buying the other product, right, put down in their mind. And it kind of rolls with that psychology. But you know, media has figured out that you just have to post it and have someone believe it and have that word of mouth spread, because those people who read it aren't going back to look to see that there's a correction or that something has been modified? Yeah? They just go with it, and it's like, yeah, rolling with it. The advent

Scott Benner 1:17:07
of social media taught people who are in the business of changing hearts and minds for whatever reason. It taught them, I don't have to get everybody, I just need a percentage, yes, and that's it, that's and the truth is, is that, like, there's also ways to think about that that aren't devious and terrible, like, I'm a very successful podcast in a very small niche, and that is why, because everyone who listens has type one diabetes or loves somebody with type one diabetes. So if you're selling a pump or a glucose monitor or something like that. The people listening to me are almost 100% a possible, you know, customer I'm a good bet to buy an ad with. And that idea is the same as what you just said, like, we'll just blurt this out to 30 million people. We only need, like, a million of them to believe it, and then, you know, we've got enough of them to capture the space. And now, at least the the idea is out there enough that even if it's not true, it still seeds doubt in people's minds. I heard a thing like the GE light bulb thing. I heard it like when I grew up, that was a fact, and as an adult, I was like, that's weird. I wonder if that really happened. And I looked into it a number of times like that, that as far as anybody can tell, that didn't actually happen.

Samantha Arceneaux 1:18:26
Well, that's what. I don't know if you've seen this meme, but it's like, you know, what did you do before the internet? How did you find out things? And it's like, Oh, your aunt Kathy told you something, and you believed it for 20 years, like there was no fact checking.

Scott Benner 1:18:38
And now think back on Kathy. She's a crackpot. So, like, I mean, listen, you're like, there's something in the dirt and one like, and you might be right, and you also might be completely wrong. Like, it's, you know what I mean, like it, but in 1975 if you said it out loud, it was true, Yep,

Samantha Arceneaux 1:18:57
that was absolutely but they also smoked in restaurants and all kinds of crazy other things that we know better,

Scott Benner 1:19:02
My God, my dad and smoking in restaurants, just my whole life. All right, I got a role. Thank you so much for doing this. Absolutely. It was great. Talking to you, fantastic. Talking to you too. I'll

Unknown Speaker 1:19:13
see you soon. Okay, sounds great. Thanks.

Scott Benner 1:19:15
Hold on one second.

You a huge thanks to touched by type one for sponsoring this episode of The Juicebox podcast. Check them out on their website, touched by type one.org or on Facebook and Instagram. Today, we heard from Leo, who will be participating in her own blue balloon challenge. Follow at Medtronic diabetes on Instagram and use the hashtag blue balloon challenge on social to see inspiring videos from Leah Aaron and other people living with diabetes, and you can join the challenge yourself or with your support squad to show how you're keeping your balloon in the air on top of everything else in life, are you starting to see? Patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.


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