#1875 Freak Out in Bay 3
Sam shares her son’s rare KCNJ11 neonatal diabetes diagnosis, her fight through the NICU, and her incredible personal journey of breaking generational trauma to build a beautiful life.
Key Takeaways
- Neonatal Diabetes & Genetics: Sam’s son Elliot was diagnosed with a rare KCNJ11 gene mutation (occurring in 1 in 600,000 babies), causing neonatal diabetes, which was initially managed with sliding-scale insulin.
- The Power of Advocacy: Sam’s traumatic hospital experience highlights the immense pressure parents face. From dealing with unauthorized $12,000 genetic labs to navigating threats from social services, her story underscores the crucial need to relentlessly advocate for your child.
- Understanding the KCNJ11 Mutation: This specific mutation prevents the kATP channel in the pancreas from closing, blocking the release of insulin. Because the body's natural glucose-sensing mechanism is broken, insulin is not secreted properly.
- Transitioning from Insulin to Glyburide: Because of the nature of the KCNJ11 mutation, Elliot was successfully transitioned off daily insulin injections at age two. He now takes a compounded oral sulfonylurea (glyburide) that pharmacologically forces the pancreatic channels to close, releasing insulin.
- Breaking Generational Curses: Sam shares her deeply moving personal journey of overcoming a traumatic, abusive childhood to provide a healthy, stable, and supportive co-parenting life for her son.
Resources Mentioned
- Dexcom G7: dexcom.com/juicebox
- Omnipod 5 Starter Kit: omnipod.com/juicebox
- Cozy Earth (Use code JUICEBOX for 20% off): cozyearth.com
- Juice Box Podcast - Bold Beginnings Series: juiceboxpodcast.com
- Juice Box Podcast Private Facebook Group: Search "Juice Box Podcast, Type 1 Diabetes" on Facebook
- Wrong Way Recording: wrongwayrecording.com
Introduction & Sponsors
Scott BennerHere we are back together again, friends, for another episode of the Juice Box podcast.
SamI am Sam. My government name is Ashley Silea. I am the mother of a neonatal diabetic with a KCNJ eleven gene mutation. He was diagnosed eight hours after he was born.
Scott BennerIf your loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juice Box podcast.
The bold beginning series and all of the collections in the Juice Box podcast are available in your audio app and at juiceboxpodcast.com in the menu. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
The episode you're about to enjoy was brought to you by Dexcom, the Dexcom g seven, the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juicebox.
Today's episode is also sponsored by the Omnipod five. And at my link, omnipod.com/juicebox, you can get yourself a free, what I just say, a free Omnipod five starter kit. Free? Get out of here. Go click on that link.
Omnipod.com/juicebox. Check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox.
Links in the show notes. Links at juiceboxpodcast.com. The podcast is also sponsored today by Cozy Earth. You can use my offer code juice box at checkout to save 20% off of your entire order at cozyearth.com. Everything from the joggers that I'm actually wearing right now to the sheets I sleep on, the towels I use to dry myself with, and whatever else is available at cozyearth.com.
Just use the offer code JUICEBOX at checkout.
Meet Sam & The Birth Story
SamI am Sam. My government name is Ashley Silea. I am the mother of a neonatal diabetic with a k c j KCNJ eleven gene mutation. He was diagnosed eight hours after he was born.
Scott BennerWow. Am I calling you Sam?
SamYes.
Scott BennerOkay. Please. Plea please.
SamIt's just easier for everybody to call me Sam.
Scott BennerI have no trouble with that. I just wanted to make sure I didn't start calling you something else. Well, how how old are you?
SamI am oh, thirty thirty?
Scott BennerSam, why don't you know how old you are?
SamWell, when you turn after you turn 25, you just kinda forget.
Scott BennerOh, was that what you do? Yeah. I should try that. You're 30 years old. You have how many kids?
SamOne.
Scott BennerOne. And how old is the baby?
SamHe is now 10.
Scott Benner10. Okay. So take me back. Your pregnancy pretty was it, like, a common pregnancy? Did it seem like it was problematic?
How was that process?
SamSo it was actually really great up until it wasn't. About thirty two ish weeks along, we noticed some problems, such as, like, the placenta starting to de He just wasn't growing. He really didn't have the room to grow because I'm a very small person also. And then things just kinda escalated from there. In about thirty five weeks, my doctor had made a comment stating that he wanted me to deliver at the time we were located in Iowa, he wanted us to deliver in the University of Iowa.
Mhmm. He never really made it seem like anything was, like, drastic, So I was like, no. Like, it's okay. Like, I picked you. I want you for a reason.
I'm a very, so to speak, shy female. I don't want everybody up in there and everything, so I was dead set that he was going to do it. He never made me feel like things were gonna take a turn for the worse.
Scott BennerOkay.
SamHe was very calm about everything. And looking back now, I realized it was actually, like, more serious than he ever led me to believe. And I think it was more him just trying to keep me calm because it we were in, like, the in between. We it could go either direction.
Scott BennerI see. No reason to get you upset in that moment?
SamYes. Okay. And then about thirty five weeks, he was like, okay. I'm gonna give it a couple more days. If we don't see any progress, then we're gonna go ahead and induce you.
And sure enough, we started the induction process.
Scott BennerOh my. And then I'm sorry. You married at that time?
SamSo my spouse and I at that time, my son's father, we were never actually married, but we were common law married at the time.
Scott BennerYou you weren't by yourself in the hospital is what I'm getting at.
SamCorrect.
Scott BennerOkay. Good. Good. So the, induction, they give you the juice to get it going. Right?
Is that the whole thing? You Yeah. Making a make a plan, show up on a certain day. It wasn't rushed or emergent or anything like that.
SamNope. We show they said to hear midnight on Friday. I think it was, like, the August 27, and we're like, okay. So we got there. It was my mom and I because we had a new puppy at the time, so his dad stayed at home.
The next morning, he was up there and everything. So it's would actually been later on and they're on Friday, and they started some type of pills they gave me, and they started all their stuff. And they're like, okay. You're gonna be here for, like, thirty six hours, and some labors last up to seventy two, especially with it being your first one. And I'm like, oh my.
Okay.
Scott BennerAwesome. And then yeah.
SamI was like, this sounds like a great time. And then all of a sudden, I mean, several hours later, they wanted me up and walking as much as possible to try and speed up the process.
Scott BennerMhmm.
SamAnd all I wanted to do was take a bath. Yeah. And I was like, okay. It's time for my bath. Like, she said, I gets up I get up every hour for a half hour.
It it's time. And she's like, let's just go ahead and see how far along you're coming. She's like, when you hit a six, you cannot because if your water breaks, like, you cannot be in the bathtub without water. She's like, okay. But I promise you, I'm nowhere near six.
And she's like, oh, you're at seven, so you're not taking a bath, and we're calling the doctor.
Scott BennerIt's your last moment.
SamYeah. And I was so mad in that moment. I was like, I just want a hot bath, and I just wanna feel better. And so they called the, anesthesiologist up. He never made it.
Scott BennerMhmm.
SamThey called my doctor in, and they're like, you're gonna have to hurry up because she's in actual active labor. And he's like, there's no reason that she should be. And she's like they they're like, no. She absolutely is. He got there, and I I kid you not.
I pushed five times, and he was still in his farm clothes, and I had my son.
Scott BennerDid he have a corn cob in his pocket by any chance?
SamNo. But he didn't have mud on his boobs.
Scott BennerOh my gosh. That's I don't know if that's amazing or creepy. I can't tell.
SamYeah. He's like, I didn't even have time to go on my lab coat. So
A Frightening NICU Transfer
Scott Bennerbaby comes, is there initially any problems at all or anything, like, on that day to be concerned about?
SamOn that day, yes. But, like, the first couple hours, like, brand new mom. I was 20, yeah, 20 years old when I had my son.
Scott BennerWow.
SamAnd they, like, threw him on my not really threw him, but, like, put him on my chest. And I was like, what do I do? Like, I don't know what I'm supposed to do right now.
Scott BennerI'm still thinking that, in case you're in case you're wondering, Sam. I'm a I'm a I'm pretty far into this, and and every day, I think, I wonder what I'm supposed to do.
SamYeah. Like, they do not give you an instruction meeting. And I, like, looked around at the nurses, like, dumbfounded, like, what just happened? Because, again, everybody's told me seventy two hours and everything, and five pushes, and he's here. And I was like, uh-uh.
Yeah. Like, I was just dumbfounded. So in the first, like, couple hours, I had opted for him to stay in the room with me because I wanted to start, like, caring for him and getting used to, like, the mom things. And they came in about an hour later and said, we're gonna just gonna take him in on the nursery just for some observation and get him cleaned up and stuff. And I was like, okay.
Didn't think anything of it. Like, they were just calm and collected. They reassured me. Come to find out behind the scenes, they were continuously checking his glucose because it wasn't where a normal child at that age should be.
Oh.
SamAnd then about oh, I couldn't even tell you what time it it was. I wanna say early afternoon, his pediatrician comes in, and she's saying, okay. So, like, we're noticing and, of course, the doctors, you know, use the big words and stuff, and I just went through this traumatizing life experience. And I was like, can you just dumb this down for me? Like, I cannot understand what you're saying.
And she's like, so your son's glucose is higher than what we want it to be. We're gonna have to transport him. And my mom's like my mom and I were both like, oh, okay. So what floor are we moving to?
Scott BennerYeah.
SamJust thinking we're going to a different level. And she's like, no. He has to go to Iowa City. I was like, what?
Scott BennerAnd then
Samfrom where we were, it would
Scott BennerWhy there? Is it because they have clean shoes? Why did you have to go to Iowa City? Did they have like
Sama So the University of Iowa is a research hospital.
Scott BennerI see.
SamSo they have they were better equipped to to care for just about, honestly, anything I've never to best comparison I can think of with Iowa City is, like, going to Saint Louis.
Scott BennerOkay. And do you get to go with him, or do they keep you at that hospital?
SamSo in a normal situation, no. If I had been if I had been probably in a better condition than I was because my blood pressure tanked and everything else, they would not have discharged me. And in that moment, I actually found out that just because baby gets discharged to a different hospital doesn't mean that mom does. And I I'll be honest, I freaked out on everybody finding that out. And my doctor actually agreed as long as, like, I passed certain requirements, I was able to go.
And he's like, with the complication that she's having or the complications she started having after giving birth and stuff, Iowa City is actually going to be the best place for her too.
Scott BennerThat was because sounds like he made a decision to help you stay with the baby. Yes. Yeah. Let me pause for a second there. So we'll we'll put you guys in transport, and we'll hold on for a second.
In your family, any issues like this in the past? Do people have autoimmune issues? Are people sick in general? Like, what's the family health like?
SamSo I do not two years after he was born, my mom has an autoimmune disease called Graves' disease, but it has nothing to do with the pancreas. It deals with the thyroid. Yep. My, like, very distant ancestors have a history of type two diabetes, but nothing, like, nothing else. And my cousin's son was actually diagnosed a year and a half ago with type one diabetes.
Scott BennerYour cousin's son was. Okay.
SamAnd they're the same age.
Scott BennerOkay. Okay. So alright. So they get you to the hospital. Baby's blood sugar won't come down.
It shouldn't be lost on people. Like, 20 is young to be dealing with all this, you know. So Yes. It's a lot happening. You know, you don't have a background in this.
Does anybody in your family have, like, even a medical background to help walk you through it, or are you just sort of, you know, at the mercy of what people will tell you?
SamYeah. I was 100% even, like, honestly, still to this day, I'm still at the mercy to what people tell me because it doesn't matter how much knowledge you have about diabetes. I personally believe anything and everything can change in a split second. Mhmm. And you can't have all the knowledge.
There's always going to be something else that you I feel like I'm learning something else every single day.
Scott BennerYeah. And you're at it for ten years now. Yes. Yeah. What is this gene mutation?
And, you know, when do they figure it out? And then how's it presented to you? And then what what does that mean for his life, you know, in the beginning and now?
Sponsor Break
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The Reality of the NICU
SamThey transported us to Iowa City. We couldn't go in the room because they were putting an arterial line. We had no idea what this was. We were able to finally go in at 03:00 in the morning just to be told that he we cannot hold him until this arterial line comes out Mhmm. Because it's connected through his like, where his umbilical cord would have been, so his belly button, and connected to the major artery in his heart.
So that way, they could do blood draws without having to poke him because they were checking him at that time every hour.
Scott BennerOkay.
SamSo they didn't wanna constantly poke him if they didn't have to on top of giving him insulin shots because he was on insulin shots at that time.
Scott BennerAlrighty. Okay. Wow. How much insulin do you give a newborn?
SamSo he was on a sliding scale, and I still have all the records of them. He was getting anywhere from one to three units for the first nine and a half months nine and a half to 10 or I'm sorry. Nine and a half to a year of his life. Mhmm. It was it just depended on where his sugar was.
Scott BennerJeez. Did you breastfeed?
SamI did not breastfeed, but I did pump.
Scott BennerOkay.
SamBecause he was he had the arterial line in for so long that I Oh, you couldn't couldn't take him up.
Scott BennerI see.
SamAnd they did after about three days, I ended up having a breakdown and they they were able to get it to where I could put my arm, like, under his head and just kinda hold him inside the incubator like that.
Scott BennerYeah. How'd you make it three days? I'm only talking to you for fifteen minutes. This was ten years ago, and I'm about to have a breakdown. This is really upsetting.
Seriously. Yes. You know? Wow. Okay.
So they let you kinda nuzzle in with them a little bit there, but they're very worried about that that arterial line.
SamYes. Yeah. I was too. Because, like, you're telling me if I pull on this or if it gets snagged on anything, like, it's connected to his major arteries.
Scott BennerYeah. Yeah. No. Of course. And you're 20 again, I'm it's it's not gonna leave me that you're 20 years old while this is happening.
I don't I think I was at a movie theater when I was 20 years old. You you know what I mean? And you're you're in a hospital doing this. You're on a sliding scale. What do you do?
Do you let him eat first, then give him insulin? Are you like, how does that all work back then?
SamSo they would have us let me back up just one second here. He when he was born, he was born under four pounds as well.
Scott BennerOkay.
SamAnd he could not maintain his own body temperature, so he had to be in, like, a heated incubator on top of it.
Scott BennerMhmm.
SamWith him being so small, and they just kept saying, like, he's the healthiest baby in the NICU. He's the healthiest baby. And I'm thinking, how is this healthy? Like, he's got all these tubes connected to him, and they come in and said he wasn't eating enough. So they had to put this NG tube in.
Mind you, I'm a first time mom. I have no idea what a NG tube. I do not take any nursing classes at all whatsoever. And so I lost it over this NG tube because he's got all these other wires. And one of the nurses, after I completely lost it on everybody, came in and she said, just because sometimes as doctors and nurses, we forget that something so minor such as an NG tube, which is just a feeding tube, come to find out.
Mhmm. Something that's so minor to us is actually a big deal to the parents, and sometimes we don't take a moment to reflect on that and explain that this is a good thing to get the nutrients he needs and to see how we can better help him with his sugars.
Scott BennerYeah.
SamSo that is, like, a moment that stuck with me
Scott Bennerfor Scary. Right?
SamUp until this day.
Scott BennerYeah. Yeah. It's just a scary sight. He's so little. And what's that tube go in his nose?
Is that right?
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Links at juiceboxpodcast.com to Dexcom and all of the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful.
SamYes.
Scott BennerYeah. Oh, jeez.
SamAnd all they do is just pour the breast milk in through the tube and it goes in through snows and gets into his digestive tract, but I didn't know that. They just kept saying another tube, another tube.
Scott BennerMhmm. This boy you made this baby with, he's 20 as well?
SamSo he oh, gosh. How old? He's five years older than me. So he's currently 34 or 35.
Scott BennerOkay.
Sam35.
Scott BennerBut he was like 30 but he's 25 then, so he's still no help. I remember myself at 25. Yes. Yeah. Yeah.
I gotcha.
SamAnd he like, of course, I was on maternity leave. We still have bills to pay on top of it. So he I'm two hours away from him at this hospital with our newborn. He's back at work, like, two or three days after we have the baby Yeah. Just because we still have to have an income to be able to pay our bills and pay for insurance and everything else.
We started in the bay one, which is, like, critical unit, and then they moved us, like, to each bay. And there's up to three bays in just like the normal NICU. By the time we got to bay three was when they finally did the genetic lab to see what was causing the diabetes. Mhmm.
Advocating During the $12,000 Genetic Lab
SamWe found out that our insurance would not cover this lab, and it's a $12,000 lab just for one person. They wanted all three of us to get this done. Oh. So we tried to opt out of getting this lab done because who has $12,000 in their back pocket?
Scott BennerWell, it sounds like 36,000.
SamWell yeah.
Scott BennerYeah. Yeah. Yeah. Yeah. But it you're independently wealthy.
Right? Your 25 year old boyfriend was working as a rocket scientist, maybe? I I mean, how
SamYeah. Right?
Scott BennerWell, hey. What if we were to ask? Hey. You guys get $36 to do free tests? We don't.
No.
SamNo. No. Like, we we do not. And not knowing how long we're gonna be here for and I was gonna be off of work, we can't just spend money just because we want to spend money. Like, that was not an option.
Scott BennerYeah. What'd they end up doing for that then? I mean, because you have the diagnosis, so how'd it work out?
SamSo at this point in time, we did not yet find out that he had the k c n j eleven gene mutation. We just knew he had some type of diabetes.
Scott BennerOkay.
SamAnd they they did say, like, several times that they believed it was linked to genetics because they there was all out of all the other labs and tests that they ran, like, there was no explanation. And this was the only test that they hadn't run yet.
Scott BennerI see.
SamSo they they knew it was linked to genetics, but they couldn't pinpoint exactly how without this specific test.
Scott BennerOkay.
SamAnd we told them, like, we can't do this. We can't afford it. I'm like, that's just not an option for us. Well, we did some research and found out that if we paid for shipping in The UK, they would do the lab for free because they wanted to study this.
Scott BennerIt was like, $100
Sameach.
Scott BennerYeah. It's $36 or 45¢ for a stamp. Which would you prefer? Yeah. Thanks a lot.
SamRight? So we, like, explained to them, we would be more than happy to pay to have it shipped to The UK to have them study it, and, like, they would share the answers or whatever with the hospital. Mhmm. The hospital did not wanna go that route. And I and I understand it now.
At the time, I didn't, but contamination and everything and all the things. So I was like, I don't know how we're gonna pay for this. Like, we're just not going to do it. We'll just do do with what we got. We know the problem, and we can go from there.
We're just trying to dig die deeper at this rate.
Scott BennerOkay.
SamCouple hours later, he's back home two hours away, and me and baby are there. About two hours after we made this decision, a nurse comes in with a needle, and I kid you not. That needle was probably six and a half inches long. The needle was longer than the baby's arm. And I was like, what are we doing?
Like, I haven't seen an insulin shot like this before. What are we doing here?
Scott BennerYeah.
SamThat's when they explained they were doing the genetic lab behind our back.
Scott BennerAnd then gonna charge you for it later? So
SamI freaked out because that's what I thought. I freaked out again. Another freak out episode. Mhmm.
Scott BennerFreak out in Bay three. Freak out in Bay three. Yeah. Yeah. Yeah.
SamGot the direct the pedia I'm sorry. Pediatrician medical director in there. I got his entire endo team in there, and it's it was this one specific doctor that had ordered it. And to this day, I still will not speak to her. If she's the only on call, I will call and call and call until I get somebody else.
I will not talk to her. And I'm on the phone with my spouse, and he's yelling at her. I'm just a blubbering mess. I'm having a full on panic attack at this point because, finally, everything just got to me, and that was the tipping point. Come to find out, they made an agreement that the university would cover the cost but never expressed that to us.
Scott BennerYeah. Communication's not great. Also, like how the same, group of people who were not concerned about the muddy boots were concerned about contamination. That's interesting.
SamRight?
Scott BennerEvery everybody's got their head screwed on nice and straight. Yeah. Again, so how simple would it have been just to come to you and say, hey. Great news. You know?
The university's gonna take care of the testing. We're gonna test the baby now. You would have been like, oh, that's amazing. Thank you.
SamYes. Absolutely. And it really would have been just that simple, and I wouldn't have freaked out for, like, the hundredth time at this rate.
Scott BennerYeah. So okay. So but once you get that diagnosis, I mean, do you treat them any differently than you were prior to knowing?
SamYes. Okay. So we were in the hospital for several months, and this lab could take anywhere from six to twelve weeks to come back because it tests literally everything in its dog. So we're still in the hospital. We're still doing the insulin on the sliding scale as normal, making adjustments as needed with his body.
Finally, the day comes for I'm sorry. Let me back up here. Mhmm. After that freakout episode with the genetic lab, they thought I had postpartum depression, so they sent social services in. I looked at them, and I said, okay.
I'll tell you right now. I do not have postpartum depression. I know it's a very real thing, and I know a lot of people deny it. But let me tell you about my experience from the minute I had my son up until I got Really, let's backtrack up to my thirty five week gestation mark up until today because these are all the things that's happening. And you're telling me that you wouldn't have a minor freak out?
Scott BennerI don't love the word gaslighting because, well, I have my own reasons, but that feels like that's what that is. Right? Like, you know, you know, beat on your head for days and days and days, and then when you go stop it, they go, hey. Why are you so upset?
SamYeah. And I that that's literally what I told him. Like, you have to understand. I've been through all of these things, and I finally just combusted.
Scott BennerYeah. I would imagine.
SamI think it's justifiable.
Scott BennerListen. I I wanna be honest with you. Yesterday, I had to make three phone calls. Okay? One to insurance for my car, one to something we're purchasing, and one to another these three unrelated issues in my life.
Right? And not one person on the phone appeared to have any grasp of their job, what they were supposed to be doing, what was needed. You know, you'd ask a simple question, they'd say, I don't know. And I'm like, woah. Woah.
If you don't know, who who know you know what I mean? It would be like if you went to the grocery store and pointed at the cash register and said to the cash register person, what's that? And they said, I don't know. Like, it was on it was on that level. Okay?
So these three calls, they go exactly the same way. I walk downstairs and spend the better part of six minutes ranting at my wife. And I don't I don't even know what I was able yeah. I was just like, why is everyone I mean, am I just getting old? Like, what's happening?
How come it appears that no one fundamentally understands their job or cares or is motivated to look into it any deeper? When they when the answer was I don't know, I said, well, what are we gonna do about that? And one girl went, she went, I was like Oh, no. Yeah. Like, I guess we hang up the phone now and you'll have no resolution.
It's like like the vibe of it. I had not been through all the things you were through. I just had three phone calls that were frustrating and I had a freak out in Bay 3. I just want you to know, except my freak out was in the kitchen.
SamThat was awesome. I had a freak out in Bay 3.
Scott BennerYeah. Yeah. You said don't I wouldn't judge yourself too harshly. I was I
Samwas Right?
Scott BennerOh, I don't I'm know I was just like, oh, what is happening? I I was like, I started saying, have to move, and she goes to where? And I'm like, I don't know.
SamThat's awesome. I love that.
Scott BennerIt just it's been I I've been alive too long now. Do know what I mean? So I'm like, I'm a fairly competent person. I'm not in a great shakes, but I'm fairly competent. You put me in charge of something, I'll get it done for you.
If I don't know, I'll figure it out. I don't think I've ever looked at a person and thought and said to them, uh-uh. I guess we'll just all just give up and lay down. You you know, like, I what in the hell? Ugh.
Anyway, I would At
Samleast pretend like you're looking for the answers.
Scott BennerI just want you to know that if I was you, they would have arrested me in that hospital. Yeah.
SamIt was it was bad.
Scott BennerYeah. I think you did fine is what I'm getting at. But go ahead.
SamWell, I appreciate that.
Scott BennerYeah. Yeah.
SamMean, after that, like, they never sent in another social worker. They had many more breakouts, but they did not send anybody else in.
Scott BennerAnd and
SamI explained oh, yeah. I explained to the social worker too also, like, I am my child's voice. He doesn't have a voice. He can't even stay awake for more than five seconds at at this point in his life. Somebody's gotta speak up for him, and that will be me.
And you're telling me that he has this disease that he's going to have to have or this disability that he will have for the rest of his life. Somebody's going to have to be in his corner and that's me.
Scott BennerYeah. And not for nothing. I still look like I looked at my high school graduation photo. So there's a lock oh, if that social worker would have come into my room, Sam, they would have had to call a hostage negotiator after that. Okay.
I would have been like I would have been like, that's enough.
SamThat's enough. Yeah. We're done here.
Scott BennerShe can't come back out now. How's that sound? Someone send somebody in here with a goddamn brain in their head because I can't do this anymore with you people. Right? I'm sorry.
Go ahead. Oh, we gotta get past this part. No. You're good. After
Samthat, I think it was really, honestly, a couple of days later, I think they were just tired of me being in the NICU because they ended up moving us to the pediatric floor, and he was the smallest and youngest child on the pediatric floor. And many of the nurses kept saying, we've never dealt with a baby or a child this small or this little or this young.
Scott BennerMhmm.
SamAnd I was like, what are we doing here?
Scott BennerYeah.
SamBut then it was like, when we were on the NICU floor, they're like, we don't typically handle diabetes. Like, they were bringing pediatric nurses from the pediatric floor into the NICU to be able to care for him.
Scott BennerMhmm.
SamBut then when we went to the pediatric floor, they were like, we don't really know what we're doing here. And I was like, I just wanna go home. I thought it's right.
Scott BennerI got kicked out of the hotel I was in previously. I think I think this is where they put me. Yeah. Yeah. By the way, what what bay are we in, by the way?
Because
SamRight.
The Diagnosis: KCNJ11 Mutation
Scott BennerWell So so so okay. So now, I mean, you you get this back. Like, can I read this here? A k c n j one one mutation is a change in the k c n j one one gene, which gives instructions for making part of the k a t p channel in pancreatic beta cells. That channel helps the body decide when to release insulin.
If the gene is altered, the channel may not work normally, so insulin can be released too little or too much depending on the specific variant. Does that all sound right to you?
SamYes. Okay. Yes. That is actually correct.
Scott BennerAnd he gets not enough? His variant is not enough insulin. Is that right?
SamThat is correct. Okay. So we went home when they finally discharged us. We still went home on a sliding scale because this lab still hadn't been back by that point.
Scott BennerOh, okay.
SamWe had to drive up there. I believe it was, like, every other day. We had to drive up there. Every day, we had to talk to them to let them know his sugars, what he ate, and everything. We were doing checks every two hours.
By month two or three of us being out of the hospital
Scott BennerMhmm.
SamMind you, he's we were in there for quite some time, and we're approaching our first birthday. That was actually, no. I believe he was closer to 14 old, I think is what it was, is when we finally got the lab back, if I remember correctly.
Scott BennerYou should've tried Uber Eats. They're pretty quick. I mean Right? Am I right to say he could have had neonatal diabetes or congenital hyperinsulinism? Is that right?
Is it the two things that could have Correct. Right. And the insulin by the way, the other one, congenital hyperinsulinism, other cause beta cells to release too much insulin. I mean, that's I don't know. I'm I think I'd choose not enough before too much if you made me pick.
You know what I mean? Jesus. Yes. So what is this technically? Is it neonatal diabetes then?
SamThat is correct. When the lab came back because he was they just said, yes. Type one diabetes. Even though they knew it wasn't Mhmm. But until they could get those answers, they couldn't for insurance purposes, they couldn't just put whatever on there.
So they just gave him type one diabetes. And then when the lab came back, we both of us had to attend this meeting or this appointment, and they explained that he is a neonatal diabetic with a KCNJ eleven gene mutation, and that one in six hundred thousand babies are born with it.
Scott BennerOh, jeez. Awesome. Yeah.
SamAnd I got that one.
Scott BennerYeah. I got that kid. I made that kid all by myself. Yeah. Thank you.
Anybody out there listening who wants to give me too much credit, I just want you to know that I just, you know, typed explain k c n j one one mutation into a browser. And and I'm just very good at reading and sounding like I'm it's coming out of my head. In case in case you're all just like, oh my god. Scott knows so much about things. I I really don't.
I just I found myself saying it with so much confidence. I was like, I should be clear. Just threw that into chat GPT real quick. So and by the way, I only use chat GPT when I'm when I'm recording because the font is bigger. Anyway, that's neither here nor there.
So Jesus. Is there anything else that comes with this mutation, or is this thing with the insulin, is it is it the entirety of its impact, or are there other things?
SamSo with my son specifically, he really just has the one mutation, but there are other kiddos out there that I found on, like, mommy diabetic support groups where they have, like, additional things attached. And I knew you were gonna ask me this question. I meant to look up what the other one was, but, like, they have other mutations with it or they have additional, like, a disease that is a side effect or a symptom of the KCNJ eleven. K. He does not.
He strictly just has this. Now, obviously, we monitor for the other things when he goes for his appointments, but there's never been any flags that's been waived to lead us to dig deeper into seeing if he has those. Mhmm.
How Glyburide Replaces Insulin
Scott BennerThat's funny. You know, moving forward, I mean, I I I'd be remiss if I didn't ask you a little bit about raising a tiny little baby on insulin. Like, what was that like? You know, were there did you have a CGM? You know, if not, when did you get it? Have you gone to pumping? You know, how have you managed over the years?
SamCertainly. So when we first got home, he was still on his sliding scale because we didn't have all the answers that we have now. Every two hours, we would have to he never wanted to wake up. He's always, even to this day, been a really good sleeper. We would have to force him awake to do his feedings and to do his insulin shots.
We would give him his insulin beforehand, let him eat, and then wake him up two hours later. And that was just a a really vicious cycle, but we made it through. We got through it.
Scott BennerYeah.
SamDad and I, even though his dad's just the only one working, we he would even wake up with me even though he had to be up at work by 08:00 in the morning and everything else. He because he knew I needed a little bit of the extra support until I no longer needed that extra support
Scott BennerMhmm.
SamWhich was really great. And then about and mind you, we're still doing pokes by with a baby, you have to do them on their heel instead of their finger or at least my baby because his fingers were too small. So we were doing his heel. By the time he started walking, that's when we had to switch to the actual finger because they were worried about dirt getting inside of an open wound even with a Band Aid on there. And then about 17 or 18 old, we were finally approved for the Dexcom for an like, the FDA actually approved us because at this time, they were not approved for anybody under the age of two.
Scott BennerOkay.
SamSo we had to go through a lot of hoops to be able to get that. And with his condition being what it was, everybody wants to study it. Everybody wants to know all the ins and outs because he is actually the only the fourth patient ever in Iowa to be diagnosed with what he has, and he was diagnosed eight hours after he's born. So, nationally, he is the youngest child that's diagnosed with what he has. So everybody was, like, getting everything that they could task for us to be able to have all these tools such as, like, the Dexcom g six at that time and everything.
Scott BennerWow. That's a lot to go through. It it just genuinely is. How's he doing today?
SamSo today, he actually, by the time he turned two, we found out that we would be able to switch him to an oral medication called glyburide.
Scott BennerMhmm.
SamAnd he they the pharmacy and there's only one pharmacy beside the University of Iowa within a four mile or four hour radius of us that can make his medication the way that it needs to be made. He takes it by mouth twice a day, and he's been on that since he's been two. So no insulin. Well, let me take that back. He only gets insulin if he's above 300 for three hours or more or ketones are present.
Scott BennerOkay.
SamWe've given him insulin four times in the past two years.
Scott BennerOkay. I so I was reading about this earlier, but, mean, help me a little more with that. So it's a sulfonylurea pill. Is that right?
SamOriginally, yes. It comes in pill form, and then they compound it. The pharmacy compounds it into a liquid form for him.
Scott BennerI see. And the drug acts is this right? The drug acts on the same potassium channel pathway. Long term studies have shown this can be effective for many patients switch from insulin to the pill under special supervision. Do have any idea why that works for him and doesn't work?
It's something about unlocking I'm gonna need your help if you know. But, like, there's something right about this mutation that's, like, stopping the transfer of I'm out of my depth here all of sudden. Can you tell me more about how this all works?
SamSo the best way that it's been ever been explained to me is a type one diabetic, as most people know, not everybody, but most people know, is insulin dependent. A type two diabetic is is more manageable because they are not insulin dependent. It can be managed for the most part and for some people through diet. Then there in the middle is Elliot. That's my son's name.
I'm sorry. I never said his name. Elliot. He has what they consider even though he's a neonatal diabetic, he's treated as if he's a type two diabetic, and the glyburide is not insulin. It just gives the pancreas a little bit of a boost to keep morphing.
Scott BennerOkay. I mean, is that generally does he still does he wear a CGM?
SamYep. He wears the Dexcom Okay. G seven.
Scott BennerOkay. What happens if he doesn't take the pill? Like, what if you forget the pill one time?
SamSo perfect example I mean, we've never forgotten his medicine, but a perfect example, yes no. I'm sorry. Easter, so Sunday. Mhmm. So he gets it twice a day.
He gets a dose in the morning, and then he gets a dose at night. He got his dose his evening dose, and usually it's about 05:00 when we give it to him. He gets it about 05:00, and then he can eat a half hour after he has it. So we did five o'clock. He was eating by 05:30, 06:00 approximately.
07:00, his sugar was 350.
Scott BennerMhmm.
SamHe's going through a growth spurt right now, so we we've had to increase his medicine and haven't found the right dosage yet for it to keep up. So at that time, we had to give him insulin because his glyburide wasn't keeping up with what he had eaten for supper and everything, and his pancreas just wasn't kicking in. And we go through spurts where, like, sometimes his pancreas will work really well, and our max is 11 without any type of medication needed. And then there's been days where we've been hospitalized because it's just not working at all. Insulin's not working, and glyburide's not working.
Scott BennerI see. Is this expected to shift throughout his life?
SamSo when he was first born, they told us there was a seventy five percent chance that he would outgrow it. By the time he turned two, it turned into a fifty percent chance. By the time he turned four, it turned into a twenty five percent chance. And now we've just kinda given up on asking because if it was gonna happen, we kinda feel like it would've, and we've gotten over the hard part now.
Scott BennerOkay.
SamAnd they did say there's a chance of it, like, him outgrowing it, but then coming back later in life, especially as a teenager.
Scott BennerWow. I don't normally like to do this, but I'm gonna read this because I think it's super interesting. So functionally, glyburide works because it bypasses the broken glucose sensing step and directly pushes the beta cell toward insulin release. In KCNJ one one disease, the problem is usually that the kATP channel stays too open, so the beta cell membrane stays too quiet and does not depolarize normally when glucose rises. That means calcium does not enter well and insulin granules are not released.
In plain language, normally glucose enters the beta cell ATP rises and the kATP channel closes. Closing that channel causes membrane depolarization. Depolarization opens voltage gate calcium channels. Calcium flows in and triggers insulin secretion. With an activating KCNJ eleven mutation, that channel does not close properly when ATP rises.
So even if glucose is present, the cell behaves like it is still at rest and insulin release is blunted. The glyburide binds to the s u r one part of the same k t p channel complex and forces the channel more towards the closed state. So instead of relying on the defective ATP signal to close the channel, the drug chooses it pharmacologically. Drug closes it pharmacologically. Once the channel closes, the cell can depolarize, calcium can enter, and the insulin can be released again.
That is the core reason about how it works. That is really fascinating and interesting and so strange. That one little mutation stopped that odd thing from working. Like, that little tiny thing that happens for people you don't even think twice about. How about that?
SamAnd especially for it happening to it's just somebody so small and so new to the world Yeah.
Scott BennerAs well. Yeah.
SamLike, their body hasn't had any wear and tear
Scott Bennerat all. Yeah. No. Right. Just it's just that it's that mutation.
And it's the one in what'd you say? Six hundred thousand?
SamYes.
Scott BennerGosh.
Overcoming Trauma & Breaking Generational Curses
Scott BennerOkay. Well, well, that I mean, so I guess you count yourself lucky there. Right? Yes. I mean, how do you do you seem reasonably upbeat.
How do you like, were you always this way, is it a is this an attitude you've grown into over time?
SamSo this is my favorite question. I love when people ask it. My sister and I had a really, really, really crappy childhood. It's like, think of the worst thing ever and then times that by, like, 50. I am just adapted to environments.
I mean, we've lived in 60 some houses that I can remember, 10 schools. No. Seven schools, 10 states, child abuse, the whole nine yards. We went through it all, and I just decided I wanted to be a better person in life than what I was given and handed.
Scott BennerOkay.
SamAnd I wanted my child to have a better life. And the entire time in the NICU, they kept saying, like, I'm surprised you haven't broken, like, more or, like, completely lost it because my minor combustions were just minor. Mhmm. And I explained to them, and I will explain this to anybody to this day. It's not about me.
I have to be strong for my child, and he's looking up to me all hours of the day. And I wanna be the best role model I can be for him because I didn't have that.
Scott BennerYeah. I mean, I don't have all the details about you growing up, but I can tell you I didn't grow up well. And I often have a feeling of, like, this is not even the worst thing that's happened to me, like, you know, this year. Or, you know, you should have been around when I was 15. Like, that was that was that was tough.
You you know? So Yes. Yeah. I mean, I get your point. You have a lot of perspective.
Right?
SamYes. Yeah. And I just I want him to just to learn okay. He sees mom being a good person. He sees dad being a good person, doing kind things, doing good things, good deeds.
I want him to learn from that.
Scott BennerYeah. So this is why you use a different name than the one you were given? Because you don't wanna have attachment to your upbringing. Is that right?
SamNo. I use a different name than the one I was given because I used to be a bartender, and I am a part time nine one one dispatcher. And I got tired of people saying it incorrectly, and most of my 911 calls would be, oh, how did you get your names?
Scott BennerLike, hey, lady. You're upside down in the car right now. Why don't you focus on that? Okay? What an interesting name.
Shut up. Yes. So you're like, just call me Sam.
SamYeah. Pretty much.
Scott BennerI'm gonna ask a couple more questions that you can feel free to say no to. Because I feel like we understand the gene mutation thing and that whole process. I'm good, and we have a little more time left. So how much of your upbringing would you be comfortable talking about?
SamI'm an open book.
Scott BennerI mean, so how many you're one of how many kids?
SamSo my mom has three girls. My dad has oh, let me think here.
Scott BennerAre you under the second hand?
SamYeah. Yeah. He has, like, 10 kids, but some of them, like, aren't his, but he helped raise them so he considers them his.
Scott BennerIs he an incredibly handsome man?
SamI mean, I guess.
Scott BennerIs he well is he wealthy? No. No. Had he
SamWell, he makes money. Don't get me wrong.
Scott BennerBut, I mean, that's he has 10 kids spread out over how many people?
SamThree.
Scott BennerThree people, 10 kids, and he was abusive to you?
SamSo he was not, but his second wife
Scott BennerWait.
SamWas very abusive.
Scott BennerSo did you live with him when he was married to her?
SamSo my dad, yes, dad. My my parents, my entire childhood went back and forth on who had custody of us. Up until about fifth grade, my dad my mom had custody of my sister and I, and my dad actually kidnapped us and moved us to a southern state.
Scott BennerSam, why didn't you lead with that an hour ago? We would have never even talked about your kid's diabetes. Oh my god. Wait. You were wait.
So what's alright. So anytime I just wanna say this is a generalization, but anytime the kids end up with a dad for any reason, I'm always baffled. So what's up with your mom? Because you're talking to her now, but what was wrong with her back then?
SamSo my mom had her first child. So my oldest sister, she had her when she was 15. So she was a a mom at a very young age. Her dad ended up getting custody of her because my sister is of a different race, and that was a very big thing during the nineties when we were born.
Scott BennerYour mom's father has custody of your sister.
SamNo. No. No. No. I'm sorry.
My oldest sister's father had custody of her.
Scott BennerI see. Okay. Your oldest sister's so she's oh, This is okay. So your sister is you're connected to your sister through your mother, but you two have different fathers?
SamCorrect. And
Scott Bennerhe got custody of her due to her race? Yes. She wasn't being treated well in Whiteyville where you live? Is that what you're trying to say? No.
No? No. What happened? Okay. No.
Okay.
SamI I'm trying not to offend anybody.
Scott BennerOh, good luck. Maybe maybe you should stop talking then. Okay. Right.
SamHe had several, like, political parties that backed to their side of the family and ended up getting custody of her saying that a white mother couldn't raise a child of another race
Scott BennerOkay.
SamBecause that just wasn't a thing then.
Scott BennerAnd can I be honest? It doesn't sound like your mom couldn't raise you because she was white. It sounds like but does sound like she couldn't raise you. I just don't know why. There were problems for sure.
Okay. So that's all crazy. Yes. Alright. So
SamAnd and, like, her age definitely played a part into it, and there there was a lot of other factors, but that was, like, their defense that they stood on
Scott Bennerwas I
Samthe the difference.
Scott BennerBut when your dad comes and and kidnaps you, he takes her too?
SamNo. No. No.
Scott BennerNo. Oh.
SamHer dad her dad had custody of her by the time she was four.
Scott BennerUh-huh.
SamWe were just back and forth between my mom and my dad up until I was in fifth grade, and that's when he took custody or he had kidnapped us. The reason my mom ended up not really losing custody, but she went through and she had lost her job. She ended up getting evicted from her home, and she didn't want us to be essentially homeless. So my my that first time, my mom had given my dad a scroll so that way we had a roof over our head because she had nowhere to go with us.
Scott BennerI see. Okay.
SamShe was living in her car for some time.
Scott BennerYour mom's living in her car for a long time. Your dad now has you and he's got custody of you. He gets remarried. That lady starts abusing you?
SamCorrect. My sister got it the worst because she is a stunning image of my mother, burns with a curl iron and everything. My mom obviously gets DCFS involved, has all this documentation, and essentially ends up going to court, and she ends up getting custody of us back.
Scott BennerOkay. Were you ever abused?
SamBecause when she had given us to our dad, she had signed over not really, like, signed over all her rights, but stated, like, she was not fit to be able to provide for it at this time and is giving temporary guardianship to my dad.
Scott BennerGotcha. So then the abuse gets, allows her to get you back. Were you abused as well?
SamI was, but not to the extent that my sister was.
Scott BennerOh, okay. She burned her with a curling iron and things like that?
SamCigarettes. There was a few instances where she was pushed down some stairs.
Scott BennerDrugs involved at all?
SamYes.
Scott BennerYeah. I mean, it sounds
Samlike Heavily.
Scott BennerYeah. Okay. Your dad didn't step in?
SamMy sister in 2017 had a huge psychotic break and ended up going to the psych ward, and he she had to to be able to be released, she had to because it's court ordered, she had to attend, like, therapy and family therapy. Mhmm. He has stated in, like, his therapy sessions because they're, I mean, they're no longer married. Yeah. That he had no idea that it was ongoing and, like, he, you know, he was really messed up.
He's now twenty some years sober.
Scott BennerOh, good for him.
SamAnd he is, like, trying trying to rekindle the relationships.
Scott BennerWhat kind of drugs are we talking about?
SamThink of the hardest thing you can think of and all the other things combined.
Scott BennerSo we're looking about meth, heroin, stuff like that?
SamAge, I do not know about, but the others, yes.
Scott BennerYeah. My gosh. Well
SamI believe a few times, fentanyl was involved as well.
Scott BennerOh, yeah. Yeah. Sure. Let me just get right to the source. And and nothing was any of the abuse sexual?
No. Okay. Gosh. No. No.
No. I mean, I can you imagine the situation you're in where where you're like, oh, well, there's good news. Yeah. Jesus. Wow.
Well and did any of that have anything to do with you your relationship? Like, when you I mean, five years older when you're 20. Like, so you were dating an older guy when you were younger. Why? Because you were looking for, you think, like, stability, like, better decision making than you were than you had access to?
SamI mean, we worked together. We were friends for a little while before we actually started dating, and I was just attracted to him. And, actually, if I'm being honest and he actually knows this. My friend and I were playing making bets on to see who they could who could get with him before the other. And then it turned into a ten year relationship.
Scott BennerGonna say, do do you see this as you having won that game or losing it?
SamRight? But yeah. By the time my dad had kidnapped us, you know, fifth grade, it took my mom two years and two to four years and a $140,000 for her to be able to fight the sports to get us because Illinois would not cross over into state lines. And mind you, we were in Mississippi, and that's several state lines.
Scott BennerCan I just make a public service announcement? You you don't need kids. You you know what I mean? Like, do it look into yourself for a second and say to yourself, am I the kind of person who's gonna burn somebody with a hair curler? Am I, the kind of guy who might, you know, do meth on a Wednesday afternoon?
Maybe I don't need a baby. You know what I'm saying? Like, please. Yeah. All of you.
Just please. It's okay. Yeah. Making this podcast has been one of the best and worst experiences of my life. I have to tell you, like, there's there's times when you hear stories like that and you just think, that is not part of my reality.
And it's hard to believe it's real, but you talk about it with, like, such, like like, it just feels so normal for you. Do you know what I mean? Like, when you're talking about it. If you wrote that story down and had me tell it, I'd be sarcastic and ridiculous, and I'd be like, can you believe this? How does this happen?
Blah blah blah. And you're like, no. No. That was Tuesday. That that would happen all the time.
Okay. You know what I mean? I it's very I'm so sorry for you. But but at the same time, and the reason I kinda wanted to bring it up and what I'm gonna close here with is, did you you do therapy to get through this? Was it just a conscious decision you made?
I mean, how is it you're not drunk or high right now? Like, what what do you attribute all your success to?
SamSo I actually did not have, like, a huge psychotic break. My sister's was in 2017. Mine was in 2014, actually, but right before I met my son's father. Mhmm. My boyfriend died on a motorcycle accident, and I started drinking heavily.
Because growing up, I mean, we had seen all this stuff, so we both said, like, we'll never do drugs. We'll never drink. 2014, my boyfriend dies. It's my senior year. I'm graduating or had just graduated.
So then I started drinking heavily, and then I actually decided, like, I don't wanna do this anymore. Like, I'm better than this.
Scott BennerMhmm.
SamAnd I don't want to go down the same path as my parents did and everything. So I just started doing better. And then after my son's father and I had separated, I I didn't know how to be a single mom because, I mean, I I've been with this guy since I was 18, and then all of a sudden, I'm got this date or not really dating, but this toddler. I'm on my own. I'm starting from the ground up.
So I did seek out therapy after we separated. I believe it's been 2022
Scott BennerGood for you.
Sam'21, '22.
Scott BennerYeah. Good for you.
SamAnd they gave me some healing or some helping tools, and now I'm here.
Scott BennerYeah. Good for you. That's really awesome, Sam. Congratulations. That's a very adult decisions you made.
And you think you made them for you, or did you make them for your son or a little of both?
SamI would say the personal growth would 100% be for both of us, but mostly, it is so he has a better life than I had.
Scott BennerSam, you broke a circle. I You must be very proud of yourself. Alright. We gotta get her to move some more wait. Sam, hold on.
Sam, so you're we get we do have to get you better Internet though. I said you must be very proud of yourself.
SamYes. I am.
Scott BennerGood for you. That's awesome. Wow.
SamI'm all about breaking all the generational curses that I can.
Scott BennerYeah. No fentanyl for you.
SamNo. And, like, people say it's weird that my son's father and I have this great co parenting relationship where we have Christmas together. Sometimes we go on vacations together. Why is it weird? Is it because society tells us it's weird?
Because if he doesn't go with or I don't go with, then we're missing out on the excitement with our child. We're missing out on an experience with a child, making core memories with our child. Yeah. Why does society say it's weird?
Scott BennerWell, listen. On top of that, I'm I'm gonna do a little guessing here. You'll stop me if I'm wrong. Right? But it doesn't he probably didn't grow up great either.
Is that right?
SamCorrect.
Scott BennerYeah. So you're two people who came from bad circumstances who both decided that's not gonna be who we are. You guys probably just got together too early. If you made me break down your relationship, it sounds to me like you were, you know, two people who found each other and probably supported each other getting through all of this crap that people put on you when you were younger. And then you get to a certain point where you realize, had we not been thrown together like this, we probably wouldn't know each other, and this probably wouldn't be a relationship that we had.
And so then you very healthily separated, but kept yourselves together when your son's involved. And, I mean, honestly, this might be the healthiest healthiest thing I've ever heard in in my life. That really does make a lot of sense to me. Am I getting that about right, do you think?
SamA 100%.
Scott BennerYeah. I I mean, I've been doing this for a while. You you know? So this is the part where someone leaves a review later that says, he's so full of himself. I yeah.
I just heard he she tried to tell her story, but he made it about him. It's a conversation. I'm just bringing stuff up. I saw your review. Go to hell.
Okay? But I think it's possible my sarcasm doesn't translate to everybody, Sam. Do you know what I'm saying?
SamOh,
Scott Benneryeah. Yeah. Yeah. Neither here nor there. That that really is, that's really well adjusted decision making on both of your parts.
Like, do you think if you guys would have met when you were 30 and you had normal lives, do you think you would be together, or do you think you wouldn't have enough in common to be together?
SamYou probably wouldn't have really enough in common
Scott BennerYeah.
SamHonestly.
Scott BennerYeah. You're like two people who were stuck in a bank robbery together and you hung out for a year after that until the trauma was gone and then you went your separate ways. Yeah. Yeah.
SamYeah. That's kinda nice. I would agree with that.
Scott BennerYeah. Now, Sam, here's the last question. Are you dating? Are you looking for a person? Are you happy single with a 10 year old?
What what what is your play?
SamSo I after we split up, I was adamant about, like, working on myself, just being me and my son. I had just started at nine one one dispatch. I became really good friends with one of the officers, actually several of the officers, and him and I were just friends for several months. And we are going on to year three of dating.
Scott BennerGoddamn, Sam. You are a success story. This is it. Well, I appreciate that. From fentanyl to happiness, the Sam story.
Yes. Sam's not her real name. We put that in parentheses at the end. It'd be awesome. Oh, I'm so happy you did this.
What made you come on the podcast?
SamA lot of people kept saying, like, when I would comment or post in there about his genetic mutation because it's so rare. A lot of people just kept saying, like, they wanna hear our story.
Scott BennerYeah. Oh, I'm glad they said that, and I'm glad I was smart enough to listen. Look at me giving myself credit for answering your email. Well,
Samit is definitely appreciated. I love sharing our story and educating people because I mean, a lot of people know type one diabetes or know about it. A lot of people know type two or know about it, but then there's that neonatal that nobody's ever heard of.
Scott BennerYeah. And that if you if people ask you, you you would say my son has neonatal diabetes. Is that how you would answer? Or do you talk about the gene do you talk about the gene mutation, or is that over people's heads usually?
SamI do include it because I wanna educate, and I wanna educate properly as much as I can. And I just try to explain them, like, he's a neonatal diabetic with a KCNJ eleven gene mutation. It came from him or it came from his dad and me or his dad or just me, and one in six hundred thousand babies have it, and that's all the answers that I really have. But I'd be more than happy to look into it further and provide you with more in more answers if you have any questions.
Scott BennerSam, I am gonna do my square best to keep this podcast going for ten more years so I can interview you again when you're 40. I would love this. I feel like
Sambe there.
Scott BennerYeah. I feel like you're gonna really be a a person who looks back and doesn't recognize who they were twenty years before. I'm I'm super excited.
SamEven to this day, I don't even, like, recognize who I was when I would when I got kidnapped or, you know, like, even before then.
Scott BennerYeah. Seriously. Good for you. I'd clap if I didn't think it was reductive. I mean, I'm seriously happy for you with the decisions you made and and all the things you've been able to accomplish.
Really, sincerely.
SamWell, I absolutely appreciate that.
Scott BennerYeah. Congratulations. That's wonderful. Okay. Alright, Sam.
Thank you so much. I I really appreciate this. Hold on one second. Okay?
Closing & Outro Sponsors
Scott BennerA huge thank you to Cozy Earth, a longtime sponsor. Cozyearth.com. Use the offer code juice box at checkout. You will save 20 percent off of your entire order when you use that code. Don't let me down kids.
Head over there now. Get yourself some joggers, some towels, some sheets. Save yourself some money. Support the podcast. Make your life beautiful and comfortable all at the same time.
Cozyearth.com. Use the offer code juice box at checkout.
Dexcom sponsored this episode of the juice box podcast. Learn more about the Dexcom g seven at my link, dexcom.com/juicebox.
This episode of the juice box podcast is sponsored by the Omnipod five. And at my link, omnipod.com/juicebox, you can get yourself a free what'd I just say? A free Omnipod five starter kit. Free? Get out of here.
Go click on that link, omnipod.com/juicebox. Check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox.
Links in the show notes. Links at juiceboxpodcast.com.
Hey. Thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box Podcast.
If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group, juice box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.
The episode you just heard was professionally edited by Wrong Way Recording. Wrongwayrecording.com.
#1874 Medical Gaslighting and Mitochondrial Diabetes
Sandy spent years misdiagnosed with Type 2 diabetes and battling medical gaslighting. Discover how the RADIANT study and AI uncovered her true diagnosis: Maternally Inherited Diabetes and Deafness.
Key Takeaways
- Mitochondrial Disease Can Mimic Type 1 Diabetes: Conditions like Maternally Inherited Diabetes and Deafness (MIDD) impair the pancreas's energy machinery, stopping insulin production. It is highly rare and frequently misdiagnosed as Type 1 or Type 2 diabetes.
- Metformin Risks with Mitochondrial Issues: Taking Metformin when you have mitochondrial disease can lead to life-threatening lactic acidosis. Sandy's misdiagnosis almost cost her life due to this exact contraindication.
- Advocate for Your Own Health: Medical gaslighting is real, and doctors may lack the time or specialized knowledge to crack complex cases. Don't be afraid to research your symptoms, ask for second opinions, and bring your findings to appointments.
- Leverage AI for Research: Tools like ChatGPT can connect disparate symptoms (e.g., short stature, hearing loss, and diabetes) that a standard 15-minute doctor visit might miss, helping you find rare clinical possibilities to discuss with specialists.
- The RADIANT Study: For individuals with rare and atypical forms of diabetes that don't fit the classic Type 1 or Type 2 molds, the Rare and Atypical Diabetes Network (RADIANT) offers specialized testing and whole-genome sequencing to uncover the root cause.
Resources Mentioned
- Eversense 365: eversensecgm.com/juicebox
- Tandem Mobi System: tandemdiabetes.com/juicebox
- US Med: usmed.com/juicebox or call (888) 721-1514
- Wrong Way Recording: wrongwayrecording.com
- Juice Box Podcast Facebook Group: Juice Box Podcast, Type 1 Diabetes
- RADIANT Study (Rare and Atypical Diabetes Network): atypicaldiabetesnetwork.org
Introduction & Sponsors
Scott BennerWelcome back, friends, to another episode of the Juice Box podcast.
SandyMy name is Sandy. I'm 51 years old, and my diabetes is complicated.
Scott BennerI created the diabetes variable series because I know that in type one diabetes management, the little things aren't that little, and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise, and those other variables that impact your day more than you might think. Jenny Smith and I are gonna get straight to the point with practical advice that you can trust. So check out the diabetes variable series in your podcast player or at juiceboxpodcast.com.
If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group, Juice Box Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.
Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
I'm having an on body vibe alert. This episode of the Juice Box podcast is sponsored by Eversense three sixty five, the only one year wear CGM. That's one insertion and one CGM a year. One CGM, one year. Not every ten or fourteen days. Ever since cgm.com/juicebox.
The podcast is also sponsored today by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.
Today's episode is also sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514. You can get your diabetes testing supplies the same way we do from US Med.
A Complicated Misdiagnosis
SandyMy name is Sandy. I'm 51 years old, and my diabetes is complicated.
Scott BennerReally, Sandy. How long have you had diabetes?
SandyI was diagnosed with diabetes November 2020.
Scott BennerOkay. So we're coming up on your sixth year. Is that right?
SandyYeah. Yeah. Or past yeah.
Scott BennerYeah. Beginning. And kind of diabetes did they, give you?
SandySo I was diagnosed with type two diabetes even though I presented as type one. I started losing weight. I was extremely thirsty, and I was losing my eyesight. And I finally decided to go get blood work, kind of in the back of my mind knowing possibly what was going on.
Scott BennerMhmm.
SandyAnd I go get blood work, and I'm at work. And I get the results through Quest Diagnostics, and my a one c was over 13, and my glucose was over 300.
Scott BennerOkay.
SandyAnd I knew right then and there, I was in trouble, but I didn't I haven't seen the doctor yet.
Scott BennerHold on a second. Is there other autoimmune in your family at all?
SandyYes. So I have Hashimoto's, and my son has Crohn's. And my son was diagnosed with Crohn's six months before I was diagnosed with diabetes.
Scott BennerOkay. How old is he now?
SandyHe's 20.
Scott BennerDo you have other kids?
SandyTurned 20. And I have a daughter who's 22. She doesn't have any autoimmune issues that we know of right now. Hopefully not.
Scott BennerOh, alright. So you I mean, give me a little bit of how you were feeling leading up to getting this blood work and and your testing.
SandyI was feeling really bad. I wasn't feeling good, and I couldn't quite put my finger on it. But, you know, any problems I've ever had, I've always blamed my thyroid. Oh, it's my thyroid because I've never been able to get it under control. And I would say, oh, it's my thyroid. Oh, it's this. But I knew that something more serious was going on with my symptoms, so I decided to go ahead and get everything checked out. And then I got the results back, and it blew me away.
Thyroid Struggles & Medical Gaslighting
Scott BennerOkay. Well, what did you mean that you can't get your thyroid under control? For how long have you had hypothyroidism?
SandyI was diagnosed in my early twenties, because I was super skinny. And I went for a regular exam, and the doctor told me that my thyroid looked a little enlarged, but it could be because I was underweight. But she wanted me to get it checked out, and I had blood work done, and it came back, with antibodies for thyroid for Hashimoto's. Yeah. And I went and got an ultrasound, and I had goiters on my thyroid, So I was put on medication.
And for years, my thyroid was pretty under control. But lately, I think since I've been diagnosed with diabetes, I can't get it under control because I will swing between hyper and hypo every six to eight months.
Scott BennerOh, what is the doctor telling you about the the constant swing? Do do they look them
Sandyfor nothing? I can't get an answer. We just constantly adjust my medication. I just started a new medication called Unithroid. So I've been on that about six weeks, so I'm hoping that will hopefully calm things down. But I've tried all sorts of medications over the years, and sometimes something will work temporarily, and then it won't work. So I don't I don't know. I think it's connected to my diabetes or actually why I have diabetes, which I guess we'll get into, but I don't have that answer yet.
Scott BennerWhy did they change the medic what was the thinking behind the medication change?
SandyAbsorption, additives that are in medication sometimes. I'm told sometimes certain people can't absorb medications because of the additives if your body's having a problem with those additives.
Scott BennerOkay. They didn't give you tyrosine? They gave you what?
SandyI was on tyrosine. So but that's that's for t three.
Scott BennerNo. Tyrosine's t four.
SandyThat's right. Tirosyn's t four. I'm thinking of Cytoml. Cytoml. You're correct.
Scott BennerT three.
SandyOkay. I was on Tirosyn for a while, and that worked for a while. And I've been on that twice. So it worked, didn't work because I went on it because, what, there's only four ingredients in it?
Scott BennerYeah. Tirosyn's pretty clean, honestly. Yeah. Yeah.
SandyAnd so I went on Tirosine a lot for a while, then went off of Tirosine. I've been on Tirosine. I've been on Levoxyl. Nothing seems to quite do it. But I'm hoping this new medication, Unithroid, I've never heard of it. Crossing my fingers that it works.
Scott BennerI hope so too. I'd I'd I'd never heard of it either. I talk to people about thyroid stuff a lot. And Yeah. Yeah. Nobody's brought that up yet. My kids everybody in my, my wife uses my wife uses Synthroid. She can't use the generic. If you give my wife the generic Synthroid, she she crashes pretty hard.
SandySee, that's what's been happening to me.
Scott BennerYeah. And Arden uses Tyrosine and Cytomil?
SandyI've done that.
Scott BennerCole does Tyrosine and, oh god, the the pig one. Why can't I think of it?
SandyOh, well, there's nature thyroid armor.
Scott BennerArmor. He does armor.
SandySee, I'd tried that, and I had a really bad reaction to it.
Scott BennerYour heart race?
SandyHeart race, sweating, dizzy, nausea. Yeah. Tried it twice and yeah.
Scott BennerYeah. He takes a very small amount. If he takes too much, it messes him up too. Yeah. His heart will start racing and stuff. My wife can't take the t three. It makes her heart race.
SandyI've only been on the t three temporarily off and on, but not recently. Only when my t three like, if I'm not converting to t three.
Scott BennerSo who's managing this for you? Do you have an endo managing this, or is your GP doing it?
SandyMy I have an endo. Yes.
Scott BennerAnd they're managing the thyroid?
SandyYes.
Scott BennerOkay. Well, let's hope that what they're doing for you now, balances things out a little bit. Because you're swinging hyper to hypo? Like, you're all over the place?
SandyI'm all over the place. I will go, like, really low. Like, I recently was hyper where I was having tachycardia.
Scott BennerYeah.
SandyAnd I've been up to hypo where my TSH is, like, over 16.
Scott BennerHave they wondered if you have Graves'?
SandyYou know, I haven't been tested for Graves', and I've researched Graves'. And I know that you can have Graves' and Hashimoto's, but I tend to go more towards Hashimoto's. But that would be another thing for me to look into once I get other things settled, so it's possible.
Scott BennerWell, before we move on, I will tell you that our overlords think that because you've had thyroid issues for thirty years, you should be looking into whether your dose is too high or too low, if it's an absorption issue, if you have Graves, or if something called toxic nodules might exist.
SandyOh, let me write that down. Toxic nodules.
Scott BennerYou want me to click on it?
SandyKnow about that.
Scott BennerI'll make clicky on it and see what it says. Okay. Oh, let's see. Hashimoto's thyroiditis, also known as chronic lymphocytic thyroiditis or autoimmune thyroiditis, is an autoimmune disorder that means you're developing antibodies. How many know all that? What's about the toxic nodules? Get the detoxing nodules. Alright. I'm just gonna go back to this.
Why am I even bothering with the Internet? Why don't I just ask our computer overlords and stop stop with this nonsense of, let's see. Pulling up the cleanest explanation of let's see what we can find out. Toxic nodule is a thyroid lump that starts making thyroid hormone on its own without listening to the normal control signals from the pituitary gland, which is TSH. I don't know.
It can feel like racing heart palpitations, anxiety, shakiness, heat intolerance, weight loss, trouble sleeping, more frequent bowel movements.
SandyWhen I'm closer to hyperthyroidism. I mean, I can mention it to my to my doctor next time I'm in and see. Yeah. I guess I'd have to get an ultrasound done.
Scott BennerI mean, don't tell her you asked you started thinking about it while you're recording a podcast because she'll probably, like, have you committed. But anyway
SandyShe knows I research a lot of things because I have complicated things going on. So I'm always going in with, hey. We need to talk about this, and I read about this. So no. No. No.
Scott BennerNo. Listen. I'm gonna tell you right now. My wife was on the cusp of needing we thought she needed an iron infusion. The doctor thought so too, but the labs didn't bear weight for the, for insurance. So my wife's been struggling, and, you know, she's trying to get the doctor to, like, you know, do it again. Doctor's like, well, we just did it. We can't really do it again. My wife did, like, five took she her blood work, threw it in a chat GPT, had it put together a one page describer for the for the doctor, threw it into the into the the notes for the doctor and said, hey. Look.
Here's the blood work I loaded in. Here's the answer I got back. And then she got an appointment on Monday.
SandyOkay. I gotta Yeah. Gotta look into this stuff. Yeah.
Scott BennerYeah. You listen. Sandy, the truth is, people don't wanna think. If you think for them, often, they're happy about it. So just as long as you're right, you know, if you're if you're not, then it's gonna be more of an issue.
Scott BennerSo okay. So you go in, you get an initial type two diagnosis?
SandySo the medical professional that I was with when I got that I got my blood work back, it was a nurse practitioner who I really liked. But I think this was just too like, not in her wheelhouse. She just kept telling me to be gluten free and sugar free.
Scott BennerThat should
Sandydo put me on metformin and Glacobride, I think it was. Okay. And and the regular metformin, not the time you eat. So I was constantly sick, and I was only on it for a few weeks, and the glycobride was having me I was having, like, a lot of lows, like, really bad lows. Okay.
So I got in with an endocrinologist, and she's looking at me, and she's like, you're not a type two. You are a type one. And I was like, that does make more sense. I didn't present as a type two. You know, I have Hashimoto's.
So she goes ahead and does all my blood work, and I did not have any markers for type one. She goes, well, you are type two. And that hit me really hard because it didn't make sense to me because I don't know how to put this without sounding judgy or rude, so I apologize to anybody, but I didn't feel that I fit the type two profile.
Scott BennerYour frame, your body say you weren't carrying extra weight. You you don't think you were eating in a certain way Correct. That kind of stuff. And that's what made you think I don't think that's right. But how why does the doctor start off by going, hey. You're definitely not type two. You're type one. Then the antibody thing throws them completely off?
SandyThat's I mean, just because I didn't have the antibodies. They're just saying, oh, well, you're automatically type two. So I decided to be a good patient. I listened. I took all the medication.
She put me on, extended release metformin, put me on Genovia. I met with a diabetes educator who really didn't know how to talk with me. So I'm vegan. I've been vegan for thirty years. Mhmm.
I'm not this health nut vegan. So just disclaimer, I do eat Oreos and, you know, things that are not healthy, but I do try to eat as healthy as possible.
Scott BennerTell me where your veganism comes from. You have trouble eating animals? What what is it? Yeah.
SandyYes. So when I in the nineties, I was in a zookeeping program where I live. I wanted to be a zookeeper, I wanted to help animals. And it just didn't make sense if I wanted to help animals, and I was also herding them. So for me, that's where it stems
Scott Bennerfrom. And you kept going that direction. Yes. Did you ever become a zookeeper?
SandyYes. I was a zookeeper for quite a long time. Was my first career.
Scott BennerWell, no kidding. That's awesome. I was just with a friend of mine this weekend, started his life off as a zookeeper.
SandyYeah. Yeah. It's a it's a great career, but I changed things. So yeah. So I met with a diabetes educator, and we were talking about all the food. And, of course, everything I eat was not on the list. You know, tofu was not on the list. Nuts and seeds were kind of on the list, but she's telling me, well, you can't eat this and you can't eat that. And I was like, but I know I can eat these things. Like, I know like, it's okay for me to eat these things even though you're telling me I can't.
So I was like, look. I'm gonna do my own research, and I will figure this out. So I cleaned up how I ate really well because I was like, look. If I'm type two, I'm gonna act like a type two, and I'm gonna do everything in my body, everything that I can do to make sure that I reverse this.
Scott BennerYeah. You you were committed to if this is the if this is what's going on, I'm gonna take a hard swing at it and see what I can make
SandyAnd it didn't work. Okay. It didn't work. So it was working for a while, and my blood sugar would go up, and it would kinda come down. And my doctor's like, well, yeah, you're gonna spike high, but as long as it comes down, you're fine. We upped the dose of my metformin, you know, and that's all she kept telling me. My a one c I I don't remember what my a one c was. I mean, it definitely came down, but it wasn't what I wanted it to be or what I thought would be good.
Scott BennerYeah.
SandySo it just kept going back and forth and back and forth. So I was on metformin for a few years, and I was doing everything that I should do, listening to my doctor, doing all my research, and I just started not feeling good. I started getting high blood pressure, and I kept going to my doctor. And I said, look. I'm not feeling good.
I can't put my finger on it, though, but just something isn't right. And she ignored me, wouldn't listen to me. And my blood pressure kept going up, and she's like, well, you're almost 15. You have diabetes. What do you expect?
And I'm like, but I haven't had diabetes that long. It is somewhat under control. I'm eating really well. It doesn't make sense.
Scott BennerAre you in a part of the country where everybody's got diabetes? So she just thought, like, well, this is what happens to these people. Is that it?
SandyI don't know. I don't know, to be honest. Okay. I've met a few, but I don't I don't have an answer for that.
Scott BennerBut that answer from the doctor is very kind of like almost feels like she's been beaten into submission kind of thing.
Sponsors
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SandyIt's possible.
Scott BennerYeah.
Lactic Acidosis & The ER
SandyI mean, I don't think she knew what to say or do.
Scott BennerRight.
SandySo I went along with that, and I just wasn't feeling good. One night, I had really bad tachycardia tachycardia. My husband took me to the ER. Everything came back normal except my TSH was really high, and they're like, oh, it must be your thyroid. So we go adjust my thyroid medication, and I'm still not doing well. So this was in April 2023.
Scott BennerMhmm.
SandySo I'm not feeling good. I decide to go to a cardiologist that summer. I go to a cardiologist. He does all these tests. I wear a heart monitor.
Everything comes back negative. My blood pressure is, like, scary high, and my husband's in the doctor's office with me. And he's like, you have white coat syndrome and high anxiety. I wanted to jump out of the chair at that moment, but I didn't. And I walked out, and I started crying because, again, nobody was listening to me, which I've had happened in the past in my life.
Scott BennerYeah.
SandySo we left trying to figure it out. I was put on metoprolol, which was working for my tachycardia, my high blood pressure, and it was working. And, again, I'm trying to be a good patient, trying to do what I'm supposed to do. December comes around, winter break starts, and I'm home alone, and I'm eating cereal for dinner. See?
Hot, the healthiest vegan. And I an hour or so later, I start having really bad stomach pains. And my family comes home, and I'm not feeling good. And I'm crying, and I'm on the bed just screaming because my stomach's really hurting. And my husband's like, we need to go to the hospital. And I did not wanna go because I knew if I went, I was just gonna be told again, this is nothing. There's nothing wrong with you.
Scott BennerYeah.
SandyHe's like, I'm gonna give you an hour, and in an hour, if you're still like this, we're going. So where we live, we have a stand alone ER down the street from us. So I finally gave in, and he took me. The nurse and my husband thought it was a gallbladder issue. I mean, I had all the symptoms they said.
I was like, fine. Let's take it out. Let's do whatever needs to be done.
Scott BennerYou're like, listen. Whatever. Alright? Yeah. Yeah. Let's start throwing I'm in the trash and see what happens.
SandyI was like, willing. Whatever. Just do it. I didn't care at that point. So they come back and tell me that I had a small bowel obstruction.
Scott BennerOkay.
SandySo I had to be taken by ambulance to the, as I call, the bigger hospital down the street, which was, like, a few miles down. So I'm admitted to the hospital for four days. They do medieval torture to me. Everything fixes itself. They couldn't figure out why I had a small bowel obstruction, and I was sent home.
Scott BennerWhat what was the torture? Did they put you in the stocks? What did they do?
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SandyI had a tube down my nose into my stomach. And it was horrible. Okay. I don't wish that upon my worst enemy. It was it was really bad.
Scott BennerOkay.
SandyAnd I was not on metformin or any of my medications in the hospital. My husband said that they were giving me insulin. I don't remember everything, but I do remember them pricking my finger. And I was checking my CGM as they were pricking my finger, you know, to compare and this and that just for fun. And we left the hospital, and I get home and, you know, I'm afraid to eat.
I start taking my medication. Things are going okay for a few days. It was winter break. Also, I'm a teacher, so I was on winter break. So I was taking that time to rest and get better.
Scott BennerMhmm.
SandyAnd like I said, I start taking the metformin and Genovia, and I start getting sick again. I can't keep anything down. I can't keep anything in. I'm just I'm feeling really bad. I called the hospital.
I need to see a gastro. They would not let me see anybody. I could not get in to see anybody. Every day, was crying. I could barely get to work when school was back in session. I wasn't working every day or half days, and every day, would call, And they're like, we can't get you in. We didn't have a referral when you were admitted, so we can't get you in. Finally, I get a call from some guy who said, hey. This was, like, almost mid January. He goes, I can get you in beginning of February to see a gastro doctor.
I was like, great. Let me take it. So I just kept saying to myself, if I can make it to February, I'm gonna be fine. They'll figure out what's going on. Martin Luther King weekend comes.
I'm still not doing good. I wake my husband up in the morning, and I said, look. I need you to take me back to the ER. I need fluids and Zofran. I can't keep anything down. I'm very dehydrated.
Scott BennerYeah. Things are getting backwards. Like, it it's it's getting worse.
SandyIt's getting worse.
Scott BennerYeah.
SandyIt's getting worse. So and, of course, I'm taking my medication like I'm supposed to be taking my medication. Okay? So he takes me back to the ER. We spend all day in the ER.
They are throwing every single test at me. It comes back normal. CT scans, ultrasounds, blood tests. The only thing that came back positive or a problem was my lactic acid. It kept rising and rising and rising.
And they were giving me bags of fluids constantly that I had a toilet commode next to my bed because I was constantly peeing. I had, like, four or five bags of fluid over a few hours because, like, this is what we need to give you to bring your arctic acid down. Right. And they couldn't figure out what was going on. It kept going up, and I was told that the number went up to close to seven.
Scott BennerOkay.
SandyAnd my husband heard the doctors in the hallway, you know, very concerned, and they come in and tell us that they're gonna have to transfer me back to the big hospital again, if we can't get this under control. And all day, my dad and my husband are on trying to figure out what's going on with me, putting everything into the deep, dark web. And they come up with lactic acidosis from metformin. So my husband tells the doctor, and he goes, oh my gosh. You're on metformin?
And we're like, yeah. It's, like, right there in my chart. He go and my husband's like, she has lactic acidosis. So I took the metformin in the morning, but I didn't take it in the evening. And because it was extended release, it started wearing off, and they took my lactic acid again, and it went down close to normal.
And he's like, that's what was going on. So go home. Don't take your medicine. Get in touch with your doctor. So I had lactic acidosis induced by metformin.
So I go home, and I get in touch with my endocrinologist. And I go into my endocrinologist, and I tell my endocrinologist what's going on. And she's like, okay. Well, here's a whole long list of medications you can't go on, and insulin is gonna be it. It's gonna be your safest thing.
I was like, let's do it. Let's let's do insulin. No problem.
Scott BennerYeah. How long has this been going on for at this point? Months?
SandySo the lactic acidosis was December 2023.
Scott BennerOkay.
SandyAnd so I saw my endocrin no. The lactic sorry. Back up. The lactic acidosis was January 2023. And so by February, I was put on insulin.
Scott BennerFrom the first time you started not feeling well till this point is how long?
SandyI couldn't tell you because it, like, just slowly crept up.
Scott BennerOkay.
SandyAnd, I blame things on my thyroid.
Scott BennerYou don't know how long you were blaming the wrong thing?
SandyCorrect.
Scott BennerAnd when you said at one point, you were in the hospital. You're not sure what they did. Were you on pain meds? Is that why you don't know? Yes. Yeah.
SandyYeah. I was on yeah. I don't even know what they gave me, but they gave me something nice.
Scott BennerI was gonna say, how'd you enjoy that? Was it good?
SandyIt was nice. I don't know. My husband knows everything that was going on. I mean, he was my rock. He was so good through it, and I don't I know I was in the hospital for four days.
I remember pieces of it. Yeah. But
Scott Benneryeah. I'm confused though of why through this whole process. If at some point a doctor said, hey. You definitely have type one diabetes, and said, no. You don't.
And then you did all this other stuff. Did you ever bring up did you know there used to be, like, a time where someone thought I had type one? Could there have been confusion there? Like or does that, like, get out of your mind because somebody's already
Sandysaid no? It kinda sat there. Like, I still was mowing it over because it it still didn't make sense. I was trying to be this great diabetic and a good patient, but it still it did not sit well with me at all.
Scott BennerYeah. Because, Sandy, I have to I'm not gonna call you out. I'm just wanna I wanna point out. I I just wanna point out. You said you didn't think you had type two diabetes.
No. But you're, like, head down doing what they're telling you to do, not feeling like you never, like, raised your hand and said, hey. Maybe I don't have type two diabetes. Should we look at that again?
SandySo throughout my life, I've had health problems that, you know, would kinda run into gray. Nothing was ever black or white, and so I was gaslit a lot for my life. Okay. And so I was afraid that that was gonna happen. So I was like, if I I'm either gonna prove to myself that I'm a type two or I'm gonna prove to them that I'm a type one.
Scott BennerOr die. I'll see what I can do. Yeah. Die. That'll show them.
Damn it. Then they'll all know they were wrong.
SandyExactly. So that's I mean, I had to prove to somebody myself or my doctor or somebody in the medical community, somebody that somebody was wrong.
Scott BennerTalk a little more first. Take a take a left turn here for a second and talk a little more about what that's like over a a lifetime to go know something's wrong with you, try to explain it to people, and nobody listens.
SandyIt's horrible. It's a horrible feeling. I mean, I have piles of tests and blood work before we had all this technology of things, and I would be told it's in your head. You have anxiety. You're making it up.
We kinda see something like this number may not be right, but it's just right on the cusp, so you're okay. Mhmm. Like, I I've always had digestive problems, and I thought I had celiac disease. I thought I had Crohn's. I don't have either.
When my son got diagnosed with Crohn's, my husband's like, you have Crohn's. You're gonna go get a colonoscopy again, which I've had one before. He's like, you're gonna get it. Ronan, my son, has Crohn's, so you have Crohn's. So I go.
I get scoped out. I'm clean. No celiac. No Crohn's. No nothing.
Nothing. So I don't know what's going on. You know, why do I have stomach problems my whole life? I'm told again, it's anxiety, maybe something I'm eating. I was gluten free for ten years.
It didn't work.
Scott BennerAnybody ever tried to tell you you were depressed?
SandyOh, yeah.
Scott BennerYeah. Were you?
SandyYeah. I don't think I'm a depressed person, but dealing with health problems, you know Gets
Scott Benneryou down everywhere.
SandyGet down in the dumps
Scott Bennersometimes Yeah.
SandyYeah. Especially when people aren't listening to you. It's very frustrating.
Scott BennerOf course. Tell me about anxiety all your life? Or
SandyYes. I I have anxiety. I've had anxiety all my life, and I know my thyroid plays a good portion of that sometimes if it's not regulated. Yep. You you know, that also
Scott BennerNo. For sure.
SandyDoesn't help. So Yeah. Yeah.
Scott BennerTough. And and the way they treat thyroid too is like, oh, we gave her the pill. That's over now.
SandyYeah.
Scott BennerYeah. They don't think about it ever again after that.
SandyYeah. It's just take a pill. Don't worry about what you're eating. Don't worry about your lifestyle, your sleep, or anything like that, your stress. Take the pill.
You're gonna be fine.
Scott BennerYou makes you wonder, doesn't it? That Yeah. How can that because that thyroid, it controls a lot. And It does. Right.
Right. And and I know that, and I make a podcast. You know that, and you were a zookeeper. Why is it my doctor doesn't know that? Or why is it they don't treat it more seriously?
SandyI just don't think they have time. I I'm I'm assuming.
Scott BennerI'm gonna say something, Sandy. May I it's been stuck in my head for a couple of weeks now. I think I'm about done hearing that doctors can't help me because they don't have time. I know. I think maybe that's just become a really acceptable excuse that we use.
SandyIt's a scapegoat.
Scott BennerYeah. Oh Yeah. They'd help me, but they don't have time. Bullshit. I've sat with doctors that have plenty of time, and they don't come up with anything either.
SandyI know. I know.
Scott BennerYeah. How about I don't know would be a nice answer? Well You know what I mean?
SandyThat's what I would like sometimes. I don't want a doctor to play like they know everything. Yeah. Just tell me that you don't know and I'm okay with that. Let's move on from there.
Find somebody else or figure it out, but you don't have to know everything.
Scott BennerYeah. I'm starting I'm starting a movement right now. No one
SandyI will be head of that movement with you.
Scott BennerNo one gets to say, oh, it's not their fault. They don't have time.
SandyRight.
Scott BennerRight. It's just it's just silly. I took my car to get fixed and my brakes were bad. And I crashed into a wall thirty minutes after I left, and they found out the brakes weren't fixed completely right. And we went back to the mechanic.
Guys said, look, guys. It's really busy. I have time to do it. Yeah. Would we go, oh, well, you didn't have time?
It's just such a strange thing to say. Like, it almost feels like it feels like this cascading situation where
SandyWell, that where I'm living, that's what we're dealing with. The health care system where I'm living is falling apart really fast.
Scott BennerI don't even I don't even care if it's a system. Once you're in the room with somebody that has taken the Hippocratic Oath, I don't actually give a shit about the health care system anymore. You're in there with somebody who told me that they're educated and ready to help. I don't know. I just saw I just had to change doctors because my doctor let me just say this.
You may many of you may have heard her on episode four thirteen. It's, she explains, thyroid issues, actually. And she's an endocrinologist, functional medicine doctor. I use her. My daughter uses her.
All my whole family goes to her. She amazing. Her husband gets a job with the French government, and they're moving to Paris. And I said to her, please, you've been with him your whole life. It's probably enough.
Why don't you get divorced? Stay here. Be my doctor. Right? Right.
But no. No. No. She wants to go to Paris and live there. So now she's leaving, and I gotta get another doctor.
Okay. Fair enough. She's got a life. I I I got past that. Then I went out to find another doctor.
She helped me locate somebody. I get in there. You know, I gotta meet the meet the guy, and he was fine. But, like, inside of five minutes, I thought, he's not saying anything. He's not asking anything insightful.
He's waiting for me to tell him what I think I need. Like and then I and then I finally, like, I let him do his thing, and then ten minutes into it, when I started getting irritated, like, not irritated externally, but irritated like this is he isn't special like she was. And I went and I said, listen. Here's the deal. And I just laid out my health in front of him.
I said, here's what I'm gonna need help with. This is what I'm taking right now. Most important thing in the world is I keep getting this GLP medication. After that, I need my iron tested every six months. I might end up asking you to sometimes tell my hematologist that I need an iron infusion.
Maybe, maybe not. They've been less you know, blah blah blah blah blah. Here's the vitamins I take. I how do I get ahold of you? And, boy, when I took over, he sat back.
He was all comfortable and happy as could be.
SandyDoctors don't want you to do that anymore.
Scott BennerYeah. Guess what? He was looking for a way out. But if I don't speak up, then he lays out this vanilla plan in front of me. Yeah.
It's about going to get blood. Oh, we'll go send you for blood work. I said, I just had blood work. Go look at that blood work. Oh, okay.
Did you? That yeah. If if I wouldn't have said anything, I'd have been off getting blood work.
SandyYeah.
Scott BennerI'm like, I don't need blood work. There's blood work right there. Pull it up. Oh, sometimes Quest won't let me oh, here it is. Oh, okay.
Awesome. Like, the whole thing feels like that.
SandyYes.
Scott BennerI just Yes. You know what I mean? Like, there's not someone with the courage or their convictions and a little bit of smarts behind it to, like, push. Now I've also been to great doctors. I'm not saying every doctor's a problem.
But when you get to one, a guy sat with me for a half an hour. And if I wouldn't have spoke, he would not have been valuable to me.
SandyI found a cardiologist like that.
Scott BennerYeah. And if I if I get sick later, do we say, oh, it's it's not his fault. He didn't have time. He had plenty of time. What he didn't have was thoughts.
Yeah. That's what I'm gonna tell you right now. I'm done. I want the I'm I'm I'm ready for the computers to take over. Let's go.
SandyWe talk about that. Yeah.
Scott BennerI'm I'm ready.
SandyLet's go back and forth.
Scott BennerI'm ready. Let's just put, like, an AI model in charge, and let's see what happens. Could it be worse? Yeah. Peep yeah.
Could couldn't be worse, could it? What are they gonna do? Blow up the planet? Oops. See?
We're already on that.
SandyRight?
Scott BennerCome on. Acting like, please. I'm done. I want something that can be Yeah. Dispassionately think about me and come up with the best possible answer.
Put me in a direction. Let me give it a shot. Like, that's all. I'm done with people. That's it.
I'm moving. I'm gonna go I'm I'm gonna go in the mountains. What do think of that? Get the hell out of here. Alright.
I'm sorry, Sandy. I just know you got the runaround, and I hear in your voice, you're an adult. You're in your fifties, and you start talking about your life with your health, and, you know, you sound like a little girl when it happens, when you start talking about it. Like, you're hurt and scared. Do you know that?
Like, can you hear it in your voice? Yeah. Yeah. Yeah. It's both shouldn't have to feel that way.
I'm sorry. We're back to it. Okay. That's okay. No.
No. I I you may it's Friday afternoon. Have all kinds of energy.
SandyStorytelling. Like, I like all of this. This is fine.
Scott BennerI'm glad. I'm glad. I'm I'm all upset today. They get you off the metformin. Maybe that's it.
I'm sorry. Go from there.
SandySo I was put on insulin because of what happened with the metformin, and I was pretty much handed an insulin pen. I met with a a nurse to show me how to inject myself with it, and that was it. I was told how much to give myself. No correction. No nothing.
I was given nothing. And so I started doing that, and I was really nervous. I didn't really know what I was doing. And so I think that was nova no. Wait.
It was the long acting
Scott BennerThey give you Lantus? They love they love remember Levemir. Lantus.
SandyLevemir. It was Levemir.
Scott BennerI was
Sandyput on Levemir. Yeah. So I was told what to do once a day, and we'll go from there. So I do the Levemir. And then at some point, I go back.
I don't remember how much longer. A few weeks after, I guess, I go back, and she's like, okay. Now you need to be put on fast acting insulin for when you eat. Mhmm. Again, I'm giving this with not a whole lot of direction.
Here here's your carb count. No correction dose at the time. Not even the the glucagon. Nothing. Like, here it is.
I have insulin. I really don't know what I'm doing. I'm doing the best that I can. I'm afraid I'm gonna go low Mhmm. Because I don't know how to treat it.
Scott BennerI would imagine you're out of your mind afraid.
SandyI was. Yeah. And I wasn't given a whole lot of direction really what to do if I go low or this or that, but I'm I'm doing the insulin. I'm doing the insulin. I keep going back to the endocrinologist to go over some things.
I had a friend who I found out was type one and, like, do you carry this with you? Do you have the glucogen? Do you have this? I'm like, no. Glucagon.
You need glucagon. Thank you. Knew I wasn't saying it right.
Scott BennerDon't worry. I've got you. Someone with no medical training. Somebody Yeah. Yeah.
Yeah. Good. Good. I'm good. Good.
Uh-huh.
SandySo he's like, you need to go to your doctor. You need to get this stuff. I go to my doctor. She's like, oh, yeah. Yeah.
Let me write you a prescription for this. And so I get that. And I'm doing okay, and everything's going alright. And I I'm on, I think, maybe two years. I'm on injectable.
And I was like, I really wanna go on a pump. Like, I hear about these pumps. I don't know anything about them, but I think it's gonna make my life a whole lot easier. I'm handed pamphlets. Choose a pump.
Talk with your insurance. Figure it out.
Scott BennerI'm sure they'd help you if they just had more time, Sandy.
SandyThey
Scott BennerYeah. If there was just more time, I'm sure she'd explain to you. It's not that the stories I hear the with the doctors go, I don't really know anything about the pumps. That's why I don't talk about them. It's not that.
And I'm sure the nurse would have helped you with, know, counting carbs and understanding your but just didn't have time. Everybody's very much. Busy. Yeah. Thank I walk out in the hall.
Everyone's leaning on the fucking wall.
SandyExactly. Yeah.
Scott BennerYeah. Okay. We're all super okay. I'm working. I just wanna know I want you all to know that.
If I'm awake, I'm doing something. Yep. Everybody else get to work. Oh, I'm getting angry. Oh, I'm having such a good time, Sandy.
Keep talking. Go ahead. That's okay. No.
The RADIANT Study & Finding Answers
SandyI just keep getting the brush off exactly what you're saying.
Scott BennerYeah.
SandySo I'm convinced at this point that I have a ladder. I do this research. I met somebody who has Lada. I talk with him, and he's like, that's what it sounds like. And I said, but I don't have the antibodies.
And I researched that it's possible that you can have Lada without antibodies. It's rare, but it could be. I was like, okay. I have Lada. That's I gave myself this diagnosis because that felt more manageable than type two at this point that wasn't being managed.
Scott BennerI was
Sandylike, I have an autoimmune problem. I could deal with another autoimmune problem. I don't want it, but it's here. Right. So I'm going to be okay with this.
So I get on a Facebook page about Lada, and I word vomit my whole story, everything that happened, and, you know, how this nothing makes sense.
Scott BennerRight.
SandyAnd this wonderful person gets on and on my post, and she's like, have you ever heard of radiant diabetes? And I
Scott BennerI Wait. Hold on. Radiant diabetes?
SandyRadiant diabetes.
Scott BennerGood. Good.
SandyI asked her about it. She said she's part of this study, and they research rare and atypical diabetes. And I was like, oh my gosh. Like, I really wanna do this. So I go on their website, and I'm thinking my luck, I'm not gonna get into this study because that's just how it goes for me.
Sorry to be a downer, but I fill out the application. I do everything. And within a few weeks, I get an email. I got accepted into the study. And I'm like, oh my gosh.
I got accepted. Like, it's rare that people get accepted into the study. I'm told there are people who fight to get into this study. And I was like, I got accepted into this study. I tell my husband, and I find out.
Scott BennerWait. Wait. Are we talking about the rare and atypical diabetes network? That's what radiant means? Okay.
SandyYes. Yes.
Scott BennerYou get into the study. I'm sorry. I cut you off.
SandyYou're fine. It's okay. I can just keep talking and talking and talking.
Scott BennerSo Sandy, I figured you I figured you out a little while ago. I know what's going on. Don't worry.
SandySo I'm emailing this person back and forth, and she's like, first, we're gonna test you for type one. And if that comes back negative, then we're gonna go on to stage two and three. I was like, great. So they do their own test. Of course, it comes back negative.
And she goes, now we're gonna draw blood to do a whole genome sequencing and to look for why you have diabetes, and then you have to do an on-site visit. So they're located in multiple universities around The United States
Scott BennerMhmm.
SandyWith doctors and researchers and nurses and stuff like that where you can go to do your insight visit. So I first go and get my blood drawn for my whole genome sequencing. So this was a year ago, which I still have not gotten back. I was hoping to get it back before this podcast, but I haven't.
Scott BennerOkay.
SandyThere's a whole thing with that, but it's fine. So I do that. And then in June or, like, May, I'm talking with them, and they're like, okay. We want you to go to one of our inpatient sites around The United States. Where do you live?
What does your life look like? And I said, look. I'm a teacher. I'm off for the summer. I can do go anywhere you want in the summer.
They're like, okay. You're gonna go to Chicago.
Scott BennerMhmm.
SandyI'm like, great. Get on an airplane. I go there in June. I spend a whole day with researchers, a nurse, like, all these fabulous people that listen to me. Yeah.
Mitochondrial Disease (MIDD)
SandySo before I go to Chicago, before I go, I'm researching everything that they test for for diabetes. And I I mean, there's, like, hundreds of things, and I'm going back and forth and back and forth and googling and all this stuff, and I come up with mitochondrial disease. And it was, like, me to a t. And I go to my husband, and I was like, please look at this. I need you to do some research.
He loves to research things, and he's good at it. And I said, please research this. Tell me what you think. He comes back to me the next day. He's like, this is you.
This is you to a t. And I and I said, don't tell anybody. I wanna go to my insight visit, and I'm gonna talk to them about it. So I spend the whole day. They're running all of these tests.
I had to drink that sugary drink, the Glucolla. Yeah. Couldn't take my insulin. My glucose goes up to 400, and I wasn't able to eat. And then they're about to bring me lunch and help me carb count, and the doctor walks in.
And he's helping me carb count, and he's going over my history with me. And we're talking about everything for a while, everything that I went through, everything that happened. And I did not bring up mitochondrial disease. And we're talking and he goes, I think you have mitochondrial disease. And I looked at him and I said, my husband and I researched this and we're thinking the same thing.
Scott BennerI would have had it written on a piece of paper in my pocket, I could have pulled it out and been like, was way ahead of you. But, no, that's awesome. Yeah. Yeah.
SandySo I actually have to back up. I totally forgot something.
Scott BennerOkay.
SandyReally important. So when I got diagnosed with diabetes, after I got diagnosed, my family kept telling me that I was not hearing them. I was not hearing things. And for a while, I was in denial. I was not listening to them.
Scott BennerWait. What's that? I can't what's that? Alright. Good.
You're good to you, Sandy. You're awesome. Good. We're Yeah. Yeah.
So
SandyI tell my endocrinologist, there's an audiologist across the hallway. She goes, if you wanna see an audiologist, I'll send you. Normally, I don't send patients until they're older. But if you wanna see an audiologist, go ahead. I go see an audiologist, lo and behold, I'm losing my hearing.
Scott BennerOh.
SandyAnd I had to get hearing aids. Where is that coming from?
Scott BennerI don't know.
SandyDon't go to rock bands. I don't work around loud noises.
Scott BennerRight. Right.
SandyOkay. So back to when I was in Chicago, and I'm talking to them about it. So I was clinically diagnosed with what's called maternal inherited deafness in diabetes, where it's a mitochondrial disease that affects my pancreas and my hearing and could affect some other organs in my body, but nothing else seems to be affected. But those are my two main things. And if you have mitochondrial disease, you can't take metformin because it will cause lactic acidosis.
Scott BennerGoddamn. You figured it out.
SandyFigured it out.
Scott BennerThat's pretty exciting, isn't it? You probably were like you probably felt like you won the lottery or the the or the Olympics or something. Put me up yeah. Look at you.
SandyI I was so happy. I I don't wanna be sick. I don't wanna have a diagnosis. I'm not sick. I take that back.
I don't wanna have a problem.
Scott BennerRight. Sure.
SandyBut I do. It's here, and I got an answer.
Scott BennerYou want less than not have an answer about something that you have a problem with. Like, you know, I I say all the time. Was like, look, nobody wants this, but if we have it, at least a good plan is a good plan. Yes. Yeah.
Yeah. And it does make you feel crazy.
SandyOh, I for everything that I've dealt with in my life, I finally felt validated. Yeah. You know, when you look at everything that I've dealt with, I'm like, that's mitochondrial disease. That's mitochondrial disease. That's mitochondrial disease.
So, like, short stature. I'm short. I'm five feet. My parents are not short. You know, there are just certain things that I have that doesn't run-in my family.
Scott BennerOkay. Wow. That's really that's astonishing that you figured that all out. Hey. Can I ask real quickly?
Scott BennerYes. Yes. Have the advancements of like, did AI help your husband through this? Like, was it a thing you couldn't Google in the past and figure out, but you were able to figure out because just because computing's different right now? The Internet's more connected or etcetera?
Using AI for Health Advocacy
SandyHe yes. He was. So my husband uses ChatGPT and all that stuff. Like I said, when we first talked, like, I'm not really into technology, but he likes to, yeah, likes to use all that technology and stuff to help him come to solutions or whatever, you know, whatever research he's doing. Yeah.
Scott BennerI have to tell you, if it wasn't for AI, and I don't know Adele, do you listen to the podcast, like, religiously? Because if not, you're not gonna know this.
SandyI do. I listen to you every morning in my classroom.
Scott BennerOh, okay. Well, then you'll you'll get the context here, everybody else that doesn't listen every day will will figure it out. But I would've never got my butthole fixed if it wasn't for AI.
SandyI would've sent to that. Yeah.
Scott BennerYeah. Yeah. Yeah. Because I googled that living crap out of that for years and nothing happened. And then one day, just said to ChadGPT, I said, hey.
I think I got I need help. And and it it in a split second, was like, have you tried this? And I was like, no. I'm like, wait. Where'd you find out about that?
And then it was just like, oh. I said, where can I get that done? The doctor's, like, seven miles from my house. I was so pissed. I was like, are you kidding me?
But, no, no matter how many times I googled it and all the different ways I thought to Google it, I came up
SandyIt with doesn't it's it's chat GPT that that works.
Scott BennerI came up with the, like, the I think probably the more common answers. Yeah. And then I I asked chat GPT or whatever. I don't know if it was Gemma. I don't remember anymore.
And it gave me all the common answers too, and I was able to respond to it and say, no. Those are all the common answers. Those don't work for me. Is there nothing else? And then it just went, yeah.
There's this.
SandyIt spits it out. Yeah. I'm becoming braver with chat GPT. My husband's teaching me, and I'm becoming braver with my diabetes because I still am navigating it by myself and your podcast. Thank you.
Scott BennerSure.
SandyAnd other people that I've talked to, and it really has helped me, like, with bolusing or how I'm feeling or my numbers or
Scott BennerOh, yeah.
SandyLike, if I'm having anxiety about something and I put it into GPT, you know, it kinda helps me figure things out. So I'm I'm getting braver with it, and it has helped.
Scott BennerSo Let me say this, and I'm sure there's some people who don't wanna hear about this. But I'm gonna tell you that I think that there's, like in the next twenty four months, you're gonna see the models are all gonna leap again, and then they're gonna wait a minute for the new chips to come out. And then once the new chips come out for the computers that power all this stuff, I think you see the models take another leap again. I think they're gonna be astonishingly better by the end of twenty twenty six, maybe sooner. And then the beginning, the middle of twenty twenty seven, I think it's over at that point.
SandyWe've had our own conversations over here about
Scott Bennerthat. Yeah. I I'm fairly comfortable telling you at some point, you're just gonna throw your graphs into a thing and be like, hey. How do I bolus for this? And it's just gonna tell you.
How long is it before I mean, there's a bunch of do it yourself, you know, algorithms. There's Loop and Trio and Android APS, blah blah. I mean, there's gotta be some that. Yeah. Some people have I mean, got to have dropped that code into this already and said, like, you know Yeah.
Can we make this I'm sure the people developing it are probably doing that. How do we make this better? How do we make it work? Like, you know, like, I don't know. I think you're real close to it.
Like, you know
SandyI'm I'm hoping. I mean, I need all the help that I can get. I finally did get on a pump, and I think everybody should be on a pump. I don't understand why everybody isn't. I love it, and it's helped me.
Scott BennerSo I'm glad it's helped.
SandyWhole d the looping and do it yourself and all that is way above me right now. Like, I can't even bring myself to that point at the moment. So maybe in the future.
Scott BennerSandy, let me let me just say this. There are people who can't afford pumps. They don't have insurance that'll cover them. Yeah. Some people are really scared of the idea that algorithms shut basal off, and they wanna always they always wanna have a background insulin in them.
And there's I mean, there's reasons. You know what I mean? Like, some people don't like stuff hanging on them. There's but I take your point.
SandyThey're I get.
Scott BennerYeah. They're incredibly valuable.
SandyI I get yeah.
Scott BennerI get diabetes tomorrow. I'm getting an insulin pump. I just want you to know.
SandyI just haven't talked to many people on a pump, so I don't, like, really get a whole lot of feedback. Like, I know two people with type one diabetes on different pumps, and they love them.
Scott BennerMhmm.
SandyAnd so but I don't I haven't had, like, a whole lot of connection with people. So and I know everybody has their own opinion. For me, it was the best thing that I did. It's worth every penny that I sink into it every month.
Scott BennerGood. Well, I'm I'm glad, you know, I'm glad for you that it that it's valuable and that you found a way to do it and everything. Yeah. Yes. Tell me more about mitochondrial disease.
Like, what what did you what have you learned since then?
SandySo I'm learning very slowly that pretty much you treat symptomatically. So like I said, I did not get my whole genome sequencing test back. So I don't have anything on paper yet. This is from a doctor through Radiant Diabetes, and I know that I fit that diagnosis. It all makes sense.
So I am going with that. I'm hoping in the next few months I have everything on paper, and then I can find somebody to help me. But from what I'm learning, reading, and on chat GPT, you treat symptomatically. So I'm on insulin. I'm wearing hearing aids.
If any other functions start failing, then I go see that kind of doctor, that ologist, and have them help me through whatever is helping. Like, if it's a cardiologist or a urologist or whatever.
Scott BennerMhmm.
SandySo there is, like, muscle issues and things that I know that I'm starting to deal with, but I can't find help right now for that because I don't have things on paper. Because once again, we're dealing with doctors not having time, and especially if you don't have something in front of you to hand them, it doesn't exist. Okay. So
Scott BennerSo they're waiting for you to tell you what's wrong with you too?
SandyI guess. I mean, I've gone to doctors and I said, hey. I have this clinical diagnosis. This is what's going on with me. Well, you look fine, so you're okay.
So we're not going to help you. We can't help you.
Scott BennerJeez.
SandyYou're treating your diabetes. You're treating your hearing loss and whatever else is going on.
Scott BennerWhat else do you have going on? So you're short stature. Your hearing's an issue. Yes. What else do you think is impacting?
SandyDiabetes, I have small hands, small feet, which also go along with it. Digestive issues. I've had digestive issues my whole entire life. Also, learning disabilities can be part of mitochondrial disease, which I do have a learning disability, not a severe learning disability. But so, yeah, things like that.
Muscle pain, joint pain
Scott BennerWow.
SandyThings that I've that that I've dealt with. Yeah.
Scott BennerYeah. Yeah. Yeah. My gosh. Oh, through your whole life too.
SandyYeah. I mean, not nothing's been severe. Like I said at the beginning, you know, everything's kind of been in the gray, you know, and I I live, I work, I I do my life, but it's been in the gray. You know? And as I get older, my body's starting to punk out because it's not getting enough energy because of mitochondrial disease.
So certain things are just starting not to work properly now. That's what I was told. This type of mitochondrial disease does hit between thirty and fifty, and so I was started really getting major symptoms in my forties with the hearing loss and diabetes.
Scott BennerOkay. Does anyone mention Wolfram's to you? No. Does that come up? No?
SandyOkay. No.
Scott BennerI'm just I'm trying to I don't know a ton about this, so I'm trying to, like, pick through it as well.
SandyNo. No. No.
Scott BennerI've had a person on who has that. That's just what I was asking. Yeah. I
Sandymean I I've read about it. You know? I mean but yeah.
Scott BennerHow can it bring on type one, though?
SandySo I guess my pancreas is not getting enough energy to produce, what is it, the beta cells? I don't know. I I'm probably not using proper terminology. I really know what I'm talking about. I'm gonna be honest.
I'm still learning, but my pancreas just isn't doing what it should be doing because it's not getting energy to do it.
Scott BennerOkay. So I'm gonna tell you I'm gonna tell It doesn't sound right. No. No. What what I have here is that it says, maybe a cleaner way to think about it is that mitochondrial disease can cause a different kind of diabetes that can look like type one because the pancreas stops making enough insulin.
Right. In mitochondrial die in mitochondrial diabetes, the problem is often the damaged mitochondrial in mitochondria in the beta cells cannot make or release insulin normally. The insulin shortage can make someone look insulin dependent, and they may even be mistaken for type one at first. Classic type one diabetes is different. Of course, we know how the how how type one works.
SandyRight.
Scott BennerSo mitochondrial diabetes, insulin production fails because the cell's energy machinery is impaired. There's some research showing that mitochondrial dysfunction is involved in bile in the biology of type one diabetes, especially in beta cell stress and injury during autoimmune inflammation, but that is not the same as saying you have mitochondrial disease by itself. Right. Causes classic autoimmune type one. The stronger clinical point is that mitochondrial disease more often causes a non autoimmune diabetes subtype that can be misdiagnosed as type one or type two.
SandyJeez. So that's what happened to me. That's why I was misdiagnosed as type two.
Scott BennerWhat a role. But Yes. But treat it like a type one because it works that way.
SandyThank you for bringing that up.
Scott BennerNo. No. No. No. I couldn't hear
Sandysaying all that. I appreciate that. Because one of the things I wanna do is when somebody like me walks into a doctor's office, I want doctors to have information to be able to look more into what this person is dealing with, and that's what Radiant Diabetes is doing.
Scott BennerYeah.
SandyThey're they're trying to get information out to doctors. I you know? So that when somebody like me walks into their office and they are not presenting either type one or type two and they're just presenting all weird and not even Modi Right. Because I got tested for Modi, that came back negative. What else could it be?
And so they they test for all sorts of things.
Scott BennerYeah. The mitochondrial issue is not just magically making you type one. Like, it's Correct. It's giving you diabetes that mimics type one
SandyCorrect.
Scott BennerAnd in different way. Yeah. So it it just says here that a doctor will look at autoantibodies, c peptide, family history.
SandyPeptides have been fine. Like Yeah. They've gone to low normal to reg you know, and a little bit above. So it my pancreas is working. So yeah.
Exactly.
Scott BennerWell, I I mean, you have a an incredibly rare thing inside of a an already rather rare thing. Not a ton of people on the planet with type one diabetes and, you know, not not based on the the overall population at least. Wow. And is there anything they can do for the mitochondrial issues? Can they treat it anyway?
SandySo I'm told or what I've read is that there's, like, what's called Mito with different supplements with co q ten being the number one thing to take. And then depending on what kind of mitochondrial disease you have and what kind of deficits you might have, doctors will come up with these cocktails that may or may not help. Some people say that they help. Some people say that they don't, and they have to readjust, with l arginine and some other supplements that they could take. So it's it's a cocktail.
Scott BennerMhmm.
SandyI've tried to start, you know, like, taking co q ten and a few things myself. But, again, I don't know what would be the right thing for me to take and in what amount and how is it interacting with other things that I'm on, hoping at some point to find some guidance of somebody to be like, okay. Yes. You have mitochondrial disease. Let's come up with a cocktail for you to see if that will help you feel better.
Scott BennerAre you having any luck finding a doctor that specializes in this?
SandyNo. So there are a few doctors around The United States that do specialize in mitochondrial disease. I really have not reached out to any of them Mhmm. Yet because I don't have my whole genome sequencing in front of me, which I've even said, you know, let's start from the ground up and, you know, do different testing, whatever. I did try to get into a hospital here close to where I live, and they said no.
So
Scott BennerThey said no? Why did they say no?
SandyBecause I'm just not weird enough. They didn't have enough information. I was not cool enough. I don't know. To join their club.
I don't know.
Scott BennerI don't think that was it. You imagine that. I don't know. You imagine if they were like, we would, but you're not quite cool enough.
SandyYou're not quite cool enough.
Scott BennerAre you I mean, obviously, you're you're you're very much paying attention to this. So you're worried about further problems in the future? You're worried about your heart, about seizures, things like that that could come from all this?
SandyYou know, I don't. I'm trying not to. So I know that seizures and strokes could be something in the future. So so I have what's called MID, maternal inherited deafness and diabetes, and there's, like, a scale where at the other end of the scale is MILAS, where that's where the stroke and seizures can possibly start happening. Doesn't always happen.
Doesn't always go that route. So I'm not trying to think that far right now. I'm thinking, like, I'm doing okay.
Scott BennerMhmm.
SandyI did find an excellent cardiologist that has done a workup on me. My heart is doing great.
Scott BennerCool.
SandySo I just have high blood pressure, so he's working on that with me. But just everything else, I'm just taking it step by step and in stride.
Scott BennerYeah. How about in your family line? Are there any women on your family line who have had these sorts of issues that in the past nobody would have been able to figure out?
SandyNot that I know of. Okay. It's possible, but there's no documentation, and I haven't heard of that. So it is passed down through mother maternal Yeah. Through the mother.
So every kid gets it, but then it stops at at the son. But the daughter can pass it on, and then everybody has their own variation whether they have symptoms or not of it from what I've read. Mhmm. So, like, I have a sister. I don't think she has symptoms of it.
Scott BennerOkay.
SandyI think she's fine. Like, I've given her the information, but I don't think she's dealing with what I'm dealing with. My mom I look back to my mom when I was growing up. I think my mom dealt with some of the stuff that I'm dealing with, and they're just she was never diagnosed.
Scott BennerSure. She alive still?
SandyYes.
Scott BennerOkay. Listen. I am not a doctor. I think it's pretty obvious if you listen to the podcast, and I'm certainly not giving you advice. But you could go to our overlords, ask what isn't a common Mito cocktail, and then ask how you might decide what the dosages of those things should be.
And it's possible that
Sandywe done that. Yeah? Yeah. I'm just so afraid right now, especially with what's happened to me, but I have done that. And I had g chat GPT put me out of schedule.
But, also, some of my I hate saying medications. Like, I feel like I'm on all these medications have changed and are kind of changing and adjusting that I'm afraid to add anything else into things until something's calmed down.
Scott BennerMhmm. Mhmm.
SandySo but I have done that. So that's where my husband made me brave.
Scott BennerGood. Good. I'm glad. Yeah. I it's funny because when you're talking so when we first started we started to record, you said I'm kinda nervous.
Are you still nervous? No. No. Not anymore. And you're very boisterous, and you're very willing to tell your story.
But then privately and personally, you get you're scared to do things sometimes.
SandyI am. Yeah. I I just because I've been through a lot the past six years, and I'm afraid of something bad happening again. And since I don't have medical guidance, really
Scott BennerMhmm.
SandyLike, I wouldn't even know who to go to if something happened or what to do. So I'm just trying to do what I know what to do, take care of what I know what to take care of and how to take care of it. And then I'm waiting for things to slowly I'm not waiting, but things are just slowly unfolding and unraveling for me. And I just you know, it's been six years since everything has started, so it's just gonna be a longer journey, and I have to be okay with that.
Scott BennerYeah. Yeah. I mean, listen. I don't again, apropos of nothing. I and I barely got through high school.
It's very important to remember all this. Like, I don't there's nothing crazy in this cocktail. You know?
SandyI oh, you're reading it.
Scott BennerRiboflavin, creatine, alpha, lipic No. You're acid, vitamin c, vitamin a, other antioxidants.
SandyIt's like I have to, like I put so much energy into going to a doctor or finding a doctor, dealing with something, and then, you know, it's a lot. So then I have to take a few step back. And that includes your podcast. Like, I really wanted to come on and talk to you Yeah. About this because I wanna get information out to other people.
But it took me time to be like, okay. I'm gonna reach out to him so that I can get on the podcast and I can talk about what I'm going through and dealing with so that other people can hear it. And, hopefully, I can hear other people, but it's like, I could take three steps forward, then I have to take two steps back. So it's like, I can't do everything all at once because I'm dealing with a lot of different things.
Scott BennerYeah. No. Well, having said that, pure encapsulation makes a mitochondrial support vitamin.
SandyYeah.
Scott BennerI mean, you know, what the hell? I'd pop a couple in and see what happens.
SandyI mean, I just might once I get off with you, you might I might feel so energized and be like, you know what? I'm gonna feel brave now, and I'm gonna do this
Scott Bennernow. Listen. It's I look. I'll read it right off the bat. Vitamin c, vitamin e, thiamine, riboflavin, which is vitamin b two, magnesium as magnesium citrate and malate.
Jeez. Nicotineamide riboside chloride. Don't know what that is. Creatine monohydrate acetyl l carotene trans reversal knotweed. You know?
I mean, cysteine lipoic acid coenzyme q ten. I mean That's
Sandyq ten.
Scott BennerYeah. I mean, listen. What are we doing? You already have a ton of problems. If this thing does you in, yeah, just call it it was gonna happen anyway.
You you know what I mean? But,
Sandylike I mean, I could get to that point. Like, let's just do it. You know?
Scott BennerI mean, honestly, like
SandyWe shouldn't do it. Yeah.
Scott BennerI mean, I I I mean, if a vitamin listen. You have a lot of problems. If the vitamin kills you, you were fucked one way or the other. It's not a different thing.
SandyI mean, you gotta look at it that way.
Scott BennerRight? I swear to god. If this vitamin puts you under, you you were on your way anyway. Okay? Just let it be.
What What do you argue with the world for? Let me see something. Listen. It's Amazon. Right?
But but but, reviews are from people using it are are pretty solid. Yeah. You know? One person said it didn't work for them out of the first 10 reviews. I can't tell any difference after three weeks of that person said.
Everybody else is like, my practitioner recommended this. It's a good energy source. I have more energy. It gives me more energy. Interesting and quality formulation.
You know, I don't mean they're just people's reviews. I don't it could be, you know, could be bots. I have no idea. I was just about to say
Sandyit could be chatbots making the reviews. But, again
Scott BennerBut Pure's a really reputable company. And and and these are expensive. They're, like, $82 for a 120. That's pretty pricey. You know what I mean?
SandyJust throw that into the pot with everything else that
Scott BennerBut listen. How many are you supposed to take a day? Let's look here. I don't know. I know.
Two capsules a day, it says. So you get sixty days worth of a shot at it for $82. If you feel better, God bless. And if you don't
SandyI mean, honestly, like, I you know, my pump is worth everything that paying every month. So, like, if that was to make me feel better, you know
Scott BennerHonestly, what do we it's like a thousand $900 a year maybe. Yeah. And if it helped, then then right on. Yeah. Yeah.
Yeah. Yeah. I listen. I I'm a I'll try anything. I you know, like, just just to see what's up.
God, I I shouldn't say this here. Just because if it's, you know, whatever. Arden's boyfriend was over recently. I was like, are you taking vitamins? And he goes, no.
I'm like, what is wrong with you? And I threw I threw because he's talking about how he feels, and I, like and I and I and I threw a bottle of vitamins on him. I said that those are on me. Take two every day. I see you taking vitamin d?
No. I said, look at how pale you are. Take vitamin d. I gave it to him because I'm I'm what they call him, Mench. I don't know if you know the word.
SandyYes.
Scott BennerYeah. Sandy, actually, I know you know the word. Don't worry about it. I can tell. So and and, yeah, he's had them for three, four weeks now.
He came over the other night. I said, are feeling? He goes, you know, mister Banner, I have a lot more energy. I do feel better. Oh.
And I was like, oh. Then I looked at Arden, who won't take the vitamins I give her. And I was like, mhmm. And she looked at me like and I she didn't say this out loud, but I think the look on her face said, leave me the fuck alone. And so and I was like I was like, whatever.
I just laughed and I went about my business. But listen. In the end, your body needs certain building blocks every day.
SandyYes. Exactly.
Scott BennerAnd we all certainly don't eat in a way that's gonna provide them all. And there's already a ton of other issues. I don't see the problem with throwing them in there just to see if they help. Like, you you know what I mean? Like, it's not gonna hurt.
You ate an Oreo. Not. Like, I imagine, like, you eat you said you ate an Oreo.
SandyYeah. I mean, I'm not exactly yeah.
Scott BennerI don't know. I'm in scary. You know what I mean? I know. Fuck you thinks in that Oreo.
SandyLike my almost my whole life.
Scott BennerYou you also have mitochondrial disease. Yeah. I I know. You're five feet tall. That's very short, by the way.
SandyIt is. It is very short.
Scott BennerI Arden one of Arden's friends is, like, five feet tall. Every time she walks I've known her for twenty years. Every time she walks in the house, I think, god, that kid's short.
SandyI am. And I teach four and five year olds, so it's like I kinda blend in really well.
Scott BennerYeah. For feel like these kids could kick my ass if they wanted to. Arden said to me the other day, she goes, hey. Let's take some online quizzes. And I went, okay.
And then one of them and now they're not even quizzes. They're just like, hey. What do you think this or that kind of stuff? Would you rather Yeah. Bees live in your whatever?
Like, that kind of thing. And she says to me he said, here's one. She goes, how many small children do you think you could beat up?
SandyOh, gosh.
Scott BennerAnd I and I go, how big are they? And she she says, it doesn't say. I'm like, well, that's an important thing here. It is important. So she picks through, and she goes, oh, everybody in here is like, how how old are they first?
And and and she's like, well, why? What do you think? I said, well, I think of a certain age, I could beat them all up. Like but I was like, you know, like I said, once I think they get into 10, 11, 12, they could probably gang tackle you. You know?
They get I mean, that's when
Sandythe hormones start hitting, you know, like, third, fourth grade and yeah.
Scott BennerYeah. I I even think maybe enough eight or nine year olds could get ahold of your legs, put you on the ground. But, I mean, you send a hoard of five year olds at me, I think I could come up. You know what I mean? Like, I'm pretty good.
They're little and they don't have a lot of dexterity. You probably just pop them in the head. They go over, like, I would imagine, you know, like bowling pins. So, I mean, I've never hit a child, so I don't know exactly what happens, but you gotta figure it can't be difficult.
SandyYeah.
Reptiles & Wrap Up
Scott BennerYeah. Yeah. So, anyway alright. Is there anything we haven't talked about that we should have, Sandy? Anything I left out?
SandyNo. No. I mean, I, yeah, I mean, I talked about the mitochondrial disease and and my diabetes. I think I've hit everything.
Scott BennerThyroid, diabetes, mitochondrial, little bit of fun in there. I got the whole thing in an hour like it was nothing. I'm a pro.
SandyYou are. I was wondering how like, how do you get it all in an hour? Like, I felt like there was so much to talk about.
Scott BennerJust gotta know when to pivot. That's all. Yeah. Like, you know, people aren't gonna know this, but you had trouble getting on. Like, I I now I'm realizing it was probably part of your your hearing aids were probably part of the problem when you're first trying to get going.
Right? They're Were they connected to the wrong thing or something?
SandyI don't know. I'm gonna I could not tell you. I don't know. Like I said, technology and me just don't jive, and I just
Scott BennerI got to hear Sandy upset before we were doing it. She sounded like Fred Munster when he gets pissed. I don't know. That's a here's a reference nobody's gonna get. And then you said you're a little nervous, and I never said to you the thing that I would have loved to have said you back then, which is I think the podcast is great because people like you who don't even have a microphone and would never normally do something like this are willing to come on and say, hey.
I don't know exactly, but here's what's been happening to me. I think that's way more valuable than someone coming on and spitting out some knowledge that they have that they say over and over again every time somebody points a camera at them or or a microphone at them. So Yeah. I think it's really valuable, and I appreciate it.
SandyWell, I appreciate you letting me come on. I didn't know, like, what your schedule is like or anything. And then, you know, like I said, I wanted to come on because I wanna pass along this information to anybody else that might be dealing with what I'm dealing with, and maybe they'll give them an epiphany. Maybe they can, you know, look into radiant diabetes, get some answers, and then maybe if somebody out there has any answers for me.
Scott BennerYeah. They can reach back to you. Listen. First of all, I record every day. Not to say schedule's a bear, but it it's, very manageable as I am an adult.
And I live in a warm and cool home depending on the year, and I have electricity. So I'm okay. I can make a podcast. I just think that these conversations are really valuable, and I think that, especially with the way things are going now, you know, I I almost see some of these conversations as blog posts in as much as that, like if I asked you to sit down and write this all out, I don't even know if you would have thought to, like I heard
Sandyyou talking about this before.
Scott BennerYeah. Like, they're just it's it's a collection of information from your perspective. It goes on the Internet, and, you know, all these AI models are all they're doing is scraping the Internet. So let it you know, you're not right about everything, but you are right that this is your experience. So Yeah.
You know, let let people's experiences pile up in in some sort of data record. Maybe it'll help us one day.
SandyI do have a question for you Please. On on the side. So I saw, like, you were building, I guess, your basement, a room, like, for your podcast, and you were talking about a reptile room. Yes. So real?
Scott BennerWell, it's not a whole room. For listen. Let's try not to make me sound crazy, Sandy. Okay? But no.
No. I know you love them probably because of your job.
SandyI do. I have reptiles. So that's why when I read that, is for real?
Scott BennerWhat do you have? We have to make this quick or Rob's gonna yell at me that I went too long. But but
SandyWe have, I think, three or four snakes, and I have a bearded dragon right now.
Scott BennerWhat kind of snakes? Are they colubrids? Are they what do you have?
SandyI think a rosy boa
Scott BennerMhmm.
SandyA Mexican black king Oh. And I don't remember the other
Scott Bennersnakes up black kings, they're fat. Right? No?
SandyNot fat long.
Scott BennerLong? Six, seven feet?
SandyYeah. Yeah. They belong to my husband and my kids, but we've had lots of reptiles. So when I when I saw that, I got really excited.
Scott BennerWas like, well, I'll tell you what I listen. I'll tell you what I have. What but tell me first about owning a bearded dragon. People who have bearded dragons love them.
SandyThey're so easy. I had it's my classroom pet right now, and we've had bearded dragons before. They're super, super easy.
Scott BennerOkay. Yeah. And they're is yours friendly? Handleable? Yes.
Sits on your shoulder, that kind of thing?
SandyYes. I take her out for the kids to touch and stuff. Yeah.
Scott BennerYeah. How does the poop? Not too bad smelling or is it okay? No. No.
SandyNot bad at all.
Scott BennerGood. Good. Good. Alright. Here's what I have.
Prepare to be impressed. I have a male Parsons chameleon.
SandyNice.
Scott BennerHe's about three years old. He's probably not quite full size, but he's probably tip of his nose, tip of his tail. He's about two feet long.
SandyOkay.
Scott BennerHe I forget. I haven't weighed him yet this year. He's been he's not he doesn't brumate, but he'd been a little slow over the winter. He really he kinda picked the corner of the enclosure and just hung out for a couple of months. I recently got a yellow tree monitor.
SandyWow. Okay. I am I'm getting impressed.
Scott BennerShe's very cool. I'm still she almost tolerates me now, which is nice. I have actually, I'll tell you this because you'll find this interesting. The Parsons chameleon is bred by one of maybe a handful of people in the whole country that breed them, that man's daughter who, has type one diabetes. I have a blue ambanja panther chameleon from Fram's cams, and they have a connection to type one as well.
SandyOh, wow.
Scott BennerThis is not something I knew before I bought it from him. He is beautiful, but he's so dumb. It's just like, he has been over top of a cup of crickets for four hours looking at them. Like, just eat one. Like, what do you it's like you with the vitamins.
I don't know what he's waiting for. Just eat the damn cricket. He won't. He'll stare at it for hours, then finally, he'll be like, okay. Fine.
He'll
Sandyeat My beardie's afraid of cricket. She'll go to the other side of the tank. So I only give her worms and stuff like that because if I put crickets in, she goes to a corner.
Scott BennerShe's an adult. She eats vegetables too and all that?
SandyYeah.
Scott BennerYeah. Yeah. Then I have oh my god. I have a small colony of Tachydromus smaradinos. They're, Japanese grass lizards.
Yeah. And I have a male and female Sri Lankan pygmy lizard. So they're these little tiny very if you Google them, they're very pretty, very cool, ornate. Alright. Really and they breed.
I actually just took two babies back to the breeder who I got them from. He's a friend, and I I give them to him and he, you know, he sells them again. I just like that
SandyYeah.
Scott BennerYou know, I don't I don't even ask him for money. I'm just like, here. Just take them. Meanwhile, they're, like, $600 apiece. I should probably ask
Sandyhim for more.
Scott BennerYou know, they're endangered, and I know I'm not doing anything to repopulate the world with them. But it makes me feel good when she has the babies and, like, pass them back out to people. The tree monitor is just wicked. Like, that was that.
SandyMonitors are awesome. I like them.
Scott BennerMy goal would be that in the next two years, maybe she'll willingly go onto my forearm. They are not something you're trying to handle or anything like
Sandythat. Right.
Scott BennerYeah. Right. The Parsons doesn't want you anywhere near him. Yeah. Right.
He is majestic. Like, it it's hard to I I I wouldn't know what to do if you told me just to keep one because the the grass lizards are incredibly, entertaining.
SandyYou have a nice collection.
Scott BennerIt is impressive. I have an eclectic collection of lizards as well. Yeah.
SandyWe've had more just since the kids have gotten older and life and stuff. Our population of animals have dwindled a little bit. But yeah.
Scott BennerYeah. I'm gonna be looking for a local kid to come by and feed them for me at some point because I'm gonna lose my my my feeder's gonna go off to grad school, and then I'm gonna need to figure out something else for when I go away.
SandyThere'll be somebody around who would do it and wouldn't love it.
Scott BennerIt's nobody in this house. I'll tell you that much. These kids hate these bugs. So and I'll I'll I'll finish embarrassing myself and impressing you by telling you that I I am a I keep a pretty impressive, Dubia roach colony that I've been I've had going for, like, a year and a half. I'm pretty
SandyThat is pretty cool.
Scott BennerImpressed with myself. But, yeah, there's a box of roaches in here. Nobody try not to think about it. That's what I do. And that's what most of these It's
Sandyjust like if people who keep rodents and stuff like that and breed them for their snakes and whatnot.
Scott BennerYeah. Yeah. Yeah. Have to. I have to tell you, snakes don't interest me.
SandyMy husband loves snakes. That's, like, his passion. He loves snakes. Knows all about snakes.
Scott BennerYeah. I will tell you though that since I've gotten the monitor, I understand people with snakes better because she is basically a snake with four legs. Some like, I look at her. You know what I mean? Yeah.
The Parsons sits around. It's fine. I don't care because he is it there's something about he is majestic. Like, it's the only way I can really put it to you. Like Yeah.
Like, I if he didn't move, I wouldn't care. But watching the monitor run around and the grass lizards do the same thing. The grass lizards are actually lacertas. They're not that that that probably just put me into a different dork.
SandyTo look those up. They look pretty they sound pretty
Scott Bennerinteresting. Might have put me to a different dork level saying lacertas just now. But
SandyNo. I know what you're saying.
Scott BennerSo no. Yeah. And I'm
Sandyon the same level.
Scott BennerAnd I'll tell you, this summer, I'm actually planning on making a a limited podcast series with the keeper who breeds a lot of this stuff because he's such be cool. Yeah. It'll be it's not for me. It'll be on his own podcast, but I'm I actually think I'm gonna host it and and record it for him because I think his knowledge should be out in the world the way he's really something. Yeah.
So I'm gonna try to help him with that. Anyway, let me get off before poor Rob pulls all of his hair up. You were awesome. Thank you very much. I appreciate it.
SandyI hope it all sounded good.
Scott BennerIt sounds awesome. You sound terrific. Thank you. Alright. Hold on one second for me.
Okay? Yes.
Closing & Sponsors
Scott BennerHead now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. A huge thanks to US Med for sponsoring this episode of the juice box podcast.
Don't forget, usmed.com/juicebox. This is where we get our diabetes supplies from. You can as well. Use the link or call (888) 721-1514. Use the link or call the number, get your free benefits check so that you can start getting your diabetes supplies the way we do from US Med.
The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense three sixty five. That thing lasts a whole year. One insertion? Every year?
Come on. You probably feel like I'm messing with you, but I'm not. Eversensecgm.com/juicebox. Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast.
If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple Podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card. Would you like a Christmas card?
If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.
The Juice Box podcast has been in production since January 2015, and in that time, we have amassed just a fantastic catalog of information for you. The defining diabetes series, Also, bold beginnings, diabetes pro tips, small sips, fat and protein, algorithm pumping, mental wellness, ask Scott and Jenny, diabetes variables defining thyroid, after dark, the math behind Omnipod five, pregnancy, how we eat, grand rounds, cold win, GLP meds, the quick start guide if you wanna get going with the podcast but you don't know where to go, diabetes myths, there's even a type two diabetes pro tip series. All of this is at juiceboxpodcast.com. Go to the menu, click on series, and they can all be found right there. If you go to juiceboxpodcast.com/lists, you'll get all these great downloadable lists of all the the different series so you can save them on your phone, keep them for later.
Every episode is listed along with its episode number. So you can go into Apple Podcasts or your you know, wherever you listen to your audio, and say you wanna hear episode fourteen sixty9, steal a one c overnight from the small sip series. Just go to the search bar, type juice box, one word, and then the episode number fourteen sixty9. It should be the first return you get. Hey.
What's up, everybody? If you've noticed that the podcast sounds better and you're thinking, like, how does that happen? What you're hearing is Rob at Wrong Way Recording doing his magic to these files. So if you want him to do his magic to you, wrongwayrecording.com. You got a podcast?
You want somebody to edit it? You want Rob.
#1873 Bend with Zevi
Sabrina discusses her vigilant approach to managing her two-year-old son Zevi’s Type 1 diabetes. Listen as she navigates diluted insulin, looping, and "vibe bolusing" a toddler.
Key Takeaways
- Trust Your Parental Instincts: Sabrina's persistence at the pediatrician and the ER, despite doctors initially dismissing Zevi's symptoms, ultimately saved his life from a fatal DKA event.
- Toddler Management Requires Flexibility: Managing a toddler's unpredictable eating habits is challenging. Strategies like "vibe bolusing," using diluted U-10 insulin, and breaking down snacks to match insulin action times can help maintain stable blood sugars.
- The Power and Fatigue of Technology: Tools like CGMs and looping algorithms offer incredible insights and tighter control (like Zevi's 5.3 A1C), but the constant stream of data requires parents to manage their own mental fatigue.
- Illnesses Drastically Impact Insulin Needs: Common childhood illnesses, and even hidden ones like RSV or parasites, can cause sudden and massive shifts in insulin resistance and daily needs.
- Accept Your Management Phase: Hyper-vigilant diabetes management may be absolutely necessary during the toddler years, but it's important to recognize that this phase is temporary and strategies must evolve as the child grows.
Resources Mentioned
- ABLE Now: ablenow.com
- US Med: usmed.com/juicebox or call (888) 721-1514
- Omnipod 5: omnipod.com/juicebox
- Small Sips Series: juiceboxpodcast.com (Click on "Series")
- Wrong Way Recording: wrongwayrecording.com
- Juice Box Podcast Private Facebook Group: Search "Juice Box Podcast, type 1 diabetes" on Facebook
Introduction & Sponsors
Scott BennerWelcome back, friends. You are listening to the Juice Box podcast.
SabrinaHi. I'm Sabrina, Zevi's mom, and we're here talking about my son.
Scott BennerHave you tried the small sip series? They're curated takeaways from the Juice Box podcast voted on by listeners as the most helpful insights for managing their diabetes. These bite sized pieces of wisdom cover essential topics like insulin timing, carb management, and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Dive deep, take a sip, and discover what our community finds most valuable on the journey to better diabetes management. For more information on small sips, go to juiceboxpodcast.com. Click on the word series in the menu.
Scott BennerWhile you're listening, please remember that nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin. This episode is sponsored by Able Now, tax advantaged savings accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an Able account because of ongoing medical needs, and many people in the diabetes community do.
Scott BennerWith ABLE Now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. Learn more and check your eligibility at ablenow.com. You spell that ablenow.com. Today's episode is also sponsored by usmed.com/juicebox. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more.
Scott BennerUsmed.com/juicebox or call (888) 721-1514. The podcast is also sponsored today by Omnipod five. Omnipod five is a tube free automated insulin delivery system that's been shown to significantly improve a one c and time and range for people with type one diabetes when they've switched from daily injections. Learn more and get started today at omnipod.com/juicebox. At my link, you can get a free starter kit right now.
Scott BennerTerms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox.
Meet Sabrina and Zevi
SabrinaHi. I'm Sabrina, Zevi's mom, and we're here talking about my son.
Scott BennerHis name is say again?
SabrinaZevi. Zevi. Like, Zev, but legally, it's Zevi with an I.
Scott BennerLike, drove the Zevi to the levy, but the levy was drunk?
SabrinaYeah. Exactly that.
Speaker 3Gotcha.
SabrinaI never even thought about that, but yes.
Scott BennerOh, that's nice.
SabrinaYeah. Now I'm gonna have to play that song to him.
Scott BennerHow old is Zevi?
SabrinaHe's two and a half.
Scott BennerWow. And your first?
SabrinaMy first and only. Yes.
Scott BennerYour first why the only part?
SabrinaHe's just spectacular, and I can't imagine. I don't know.
Scott BennerWon't need another one.
SabrinaYeah. I don't need another one. He's he's I'm also 40 years old, but not you know? I don't know. He's just everything that I could imagine.
Scott BennerThat's lovely.
SabrinaThe most spectacular little boy. Nice.
Scott BennerHow do you get to being pregnant when you're 38? What's the pathway to that?
SabrinaWell, everyone thought I think I was gonna be just, like, an old maid, never married, and met my husband kinda late and got pregnant. We started trying about three, two months after getting married because everyone told me it was gonna take, like it could take a year. Got pregnant, like, almost immediately.
Scott BennerRuined that for your husband. Yeah. Yeah. Yeah.
SabrinaSo Jokes on him. On me.
Scott BennerYeah. Yeah. Yeah. Yeah. Yeah.
Speaker 3Yeah. So
Sabrinaand I was very up in the air about, like, even during labor, I was like, get them out of me. Like, I I didn't know if I wanted I love kids. I was very on the fence of, like, do I wanna have a child? Because I was 37 years old at the time. he he was born, like, two months before I turned 38.
Scott BennerSo That's I I talk about that for a second. That's a long time to, like, settle into what life is. Right? And then suddenly
SabrinaFor sure. No. I was
Scott BennerYou let the boy in, and then you let the boy in for real, and then you have baby come out.
Speaker 3Yeah.
SabrinaYeah. I'm very I mean, I dated a lot, and I'm very just comfortable in my life and independence and but also desperately wanted to meet someone and then kinda gave up on that in a certain way of just, like, I'm just gonna enjoy myself. And then pandemic hit, and we met, and just very, like, natural progression.
Scott BennerWere you disappointed or happy when he turned out to be somebody you could marry?
SabrinaOh, no. Very I we said I love you within two weeks. It was, like, very, it felt very natural. I don't know. Like
Scott BennerJust felt good.
SabrinaYeah. It it was very easy. And I had been on some you know, been through so many things where it just felt, like, hard.
Scott BennerMhmm.
SabrinaAnd it's not supposed to be hard. It's supposed to just feel like you know the person. Yeah. No. I I I I wasn't, like, forcing anything.
SabrinaI didn't have, like, a timeline. You know? I just wanted to be married to my best friend. I think it was at the end of the day, you know you know, I
Scott BennerNo, like God. Anger or sadness that it didn't happen sooner, or you're just happy it happened?
SabrinaNo. Not at all.
Scott BennerGood for you.
SabrinaI was, I mean, for me personally, I don't think I could have shown up as a mother and what in the same way in my twenties or even early thirties.
Scott BennerOkay.
SabrinaI I needed to, like, travel all over the world and grow my business and just get more and more confident in who I am Mhmm. If that makes sense. I yeah.
Scott BennerYou're an only child?
SabrinaNo. I'm the youngest of four
Scott BennerWow. Oh, youngest of four.
SabrinaYeah. I'm the youngest of four.
Scott BennerYou grew up. Nobody was even paying attention to you.
SabrinaNo. Everyone paid attention to me. Really?
Scott BennerTell tell tell me a little more.
SabrinaIt was just kind of the running you know, I'm yeah. I don't know. I was I was like my mom's tag along and always spent time with my parents. And, you know, I was very big into sports, and I don't know. I just kinda I was, like, a nerd, but, like, a sporty nerd and just kinda, like, kept myself in certain ways.
Scott BennerYeah.
SabrinaBut, no, I'm I'm very much the baby of the family and in the good ways and the bad ways of, like, of course, you're saying that Sabrina. You know, that kinda
Scott BennerYeah. The three are like, you know, I don't know what she's talking about. I I believe this summer, I will be married for thirty years.
Speaker 3Mhmm.
Scott BennerAnd last night, my wife we we're getting ready. I just built, a recording studio in an office.
SabrinaOh, nice.
Scott BennerYeah. To to move everything into it. So it's up to the part now where we're getting it painted.
SabrinaOkay.
Scott BennerAnd my wife just come we're not talking about it at all. Like, it's not happening. She walks into the room and she says, oh, you know, the guy's coming over to paint soon. And I said, yeah. She goes, I was just in the powder room.
Scott BennerI stepped right in front of her sentence and I said, on the left side, there's a piece of trim on the wainscoting that needs to be caulked underneath. And she goes, oh my god. How did you know that? I said, well, sweetheart, we've been together for thirty years. I was like, you don't think that you and I see things, like, kinda the same way now?
Scott BennerWhich is frightening because we are completely different kinds of people. Yeah. And this is not an easy it's not like there's a giant crack on the wall. I there's Yeah. A tiny little line underneath of a lip that if I'm being honest with you, you pretty much have to be leaning forward while you were sitting on the toilet to see.
SabrinaI I'm gonna say, I you it's the details. It's the it's every I I get it. No. I yeah.
Scott BennerMy wife, like, she looked like like a little girl for a half a second when she looked at me. Almost like she was like, oh, this is a good guy. Like, that was it's a weird it's weird where you see, like, things like that kinda pop up after you've been together for a really long time. Anyway, I said, see, we we agree on all kinds of stuff. And she goes, don't get carried away.
Scott BennerAnd I was like, oh, okay. So so, anyway, so baby goes in, starts cooking, comes out. Was the pregnancy easy?
SabrinaEasy, medically speaking. I just was so nauseous and morning sickness all day every day pretty much until he came out of me.
Scott BennerOkay.
SabrinaAnd it would just was instantly gone. But it was very tough. Like, I felt like I was, like, dying for two months in the beginning, barely got out of bed, which is, like, big for me because I'm very active.
Scott BennerMhmm.
SabrinaAnd then slowly kinda got a little bit better. But but, no, I I mean, I'm I'm not exaggerating when I say, like, during labor. I'm even my mom was in the room with us, and she's a photographer. So she was like, this is, like, her Super Bowl.
Speaker 3She's, like, finally yeah. Yeah. Yeah. Yeah.
SabrinaYeah. She's, like, in there. Well, he's like, I'm pushing. He's almost out. And the the the midwife, I use a midwife at the hospital, and she was like, oh, you can't record this.
SabrinaShe was like, oh, okay. To my head, I'm going, oh, she's gonna record this.
Scott BennerNo. Of course, I won't. Don't worry about it. It'll be yeah. Yeah.
SabrinaBut, no, I'm literally yelling her, like, going, just get it out of me. Like, I don't even want this. You know?
Scott BennerGive it back. Did someone keep a receipt? Yeah. Yeah. No.
SabrinaI it was Good. Yeah. So, I mean, that was I've been back and forth for almost the whole pregnancy of, like, I think I want this. I don't know. And then as soon as he came out, I was like, oh my god.
SabrinaHe's just amazing.
Scott BennerSo that that's what gets thrown inside you. Right? Yeah. Yeah. Okay.
Autoimmune Issues & Experimenting with GLP-1s
Scott BennerSo husband's side, your side, we're looking for any autoimmune issues, anything like that?
SabrinaAutoimmune is my side. Only recently have we real like, so my mom is celiac, kinda started around COVID, and she's had a lot of health complications. But before that, not really. Like, no die I mean, my dad has, like he he's not he doesn't mean he doesn't take care of himself very well. So he has kind of, like, teetered on, like, that you know, being diabetic type two
Scott BennerType two.
SabrinaOn and off.
Speaker 3Yeah. But
Sabrinanot it it's not, you know, it's not type one, and it's we don't have
Scott BennerThyroid? Vitiligo?
SabrinaKind of. See, that's the thing is I didn't realize how many autoimmune issues there were until I started to understand autoimmune.
Scott BennerYeah.
SabrinaSo my sister one of my sisters has Hashimoto's. Mhmm. And but she was diagnosed, you know, three, four, I don't know how many years ago. So it wasn't it wasn't always, like, on the forefront. I didn't grow up with it thinking, like, oh, this is you know, I was I kinda stumbled on my autoimmune.
SabrinaI have, like, a tissue disease. It's called, like, limited sclerosis. Okay. But I don't have present as, like, many normal symptoms, but I just have, like, a lot of, like, joint and muscle pain, which is a whole other conversation in your podcast actually.
Speaker 3Mhmm.
SabrinaKinda, like, opened my eyes to, like, using something that I'm we're, like, experimenting with right now, GLP one, which is wild. Oh. Yeah. And I have, like, absolutely no weight to lose, So it's I am micro go microdosing the microdose.
Scott BennerTo see.
SabrinaAnd it's still affecting me almost too much. Like, I've lost too much weight in two weeks.
Scott BennerYeah. You just gotta keep eating.
Speaker 3You
Sabrinajust eat. Very I am so I felt like I'm pregnant again, honestly. And it's like I'm, like, force feeding my yeah. It's it's been very hard.
Scott BennerI have to tell you that last night, Arden's finishing up a semester, so she had, like, tests yesterday. She comes home. She's wrecked. Right? She's like, have a headache.
Scott BennerI I didn't eat. Like, I'm like, you know, Kelly's like, I'm hungry. I was I was like, oh, I could eat. And then I get a text about, like, what do you want? This text chain is clearly showing everyone that no one's cooking.
Scott BennerRight? Like, someone's Yeah. Trying to figure out where to go get food. I just want some dead flesh. I don't really care what it is.
Scott BennerEven my son was like, I'm in because, you know, he usually is like, no. You people, like, I'll eat on my own. But we stood around trying to imagine what to eat, and everybody was like, I don't know. I don't know. Like, nobody could and it's the GLP.
Scott BennerLike, everybody's like, I don't know.
SabrinaWell, the the intention for me is it's supposed to there's a theory that it's supposed to reduce inflammation.
Scott BennerRight.
SabrinaAnd everything it just feels like I ran a marathon every day for, like, the past almost two years. Mhmm. And I haven't I mean, I have done some kind of workout during the day, but, like, nothing like I you know, I'm taking if the lowest dose, I think it's, like, two point five is, like, the smallest.
Speaker 3Mhmm.
SabrinaI'm taking one point two five, and I still think it's too much.
Scott BennerHow are you injecting it?
SabrinaJust in my belly. And I which is a good thing in some ways because I'm showing Zevi because we don't really give him, maybe giving him two or three injections Mhmm. Since the hospital before he got he got his pump in the hospital.
Scott BennerSaying, are you drawing it out with, like, an insulin needle?
SabrinaI'm drawing it out. Yeah. I'm using, like, my little, like yeah. I'm with our syringes.
Scott BennerYeah. I mean, are you try have you tried less, like, than even the can?
SabrinaI tried even less this past week. Yeah. Okay. I have a meet I have an appointment today with the endo, but, it it's just kind of yeah. It's like a really a rheumatology issue, but we're going this route just to, like, an experiment for, like, a month or so.
Scott BennerNo. Sure. Do you think it's touching anything?
SabrinaI kinda do because I don't feel the achiness in, like, my knees and my ankles as much. And but it's it's hard. I I just can't in some ways, I feel a little bit better. In other ways, I'm you know, my sleep is, you know, pretty disjointed Mhmm. Natur you know, normally now.
SabrinaSo
Scott BennerYeah. Because of the vape. Yeah.
SabrinaI don't know. It's you know? Yeah. But I never even thought about it until all your episodes because I was researching, not that Zevi would use it right now, but, like, maybe, you know, in the future, it would be something that would reduce, you know, his insulin needs.
Scott BennerMhmm.
SabrinaAnd and then I kept kinda, like, going down a rabbit hole and then kinda stumbled on, and I presented it to the rheumatologist. She's like, I don't feel comfortable. Like, I don't know anything about it, but will you reach out to the endo? And immediately, she was like, let's try that. That sounds, you know, sounds okay.
SabrinaLet's try it. Yeah. I'm I'm willing.
Scott BennerYeah. Yeah. And you're listen. I'm gonna make a leap here, if I'm wrong, I'll slap my own hand. But some anxiety for you?
SabrinaI'm a neurotic Jew. Yeah. I'm I'm
Scott BennerI didn't wanna say it. When I heard Zevi, I was like, I know what's going on here. But I get it.
SabrinaI I'm very I I'm, like, the most chill anxious person you'll ever meet. I could care less about so many things, but, yeah, I'm just naturally you know, I'm very type a. So yeah. No. I
Scott BennerSo let let me share something with people. So when you you pop you all you guys, when you come on to record, like, we talk for a a few minutes before we start. It's mostly to get technical stuff together. And you popped on and I could see you, which is not everybody is even, like, has a camera on and I'm you're sitting in front of a laptop. So I don't want you doing that because it doesn't sound good.
Scott BennerAnd so I'm trying to pick through what's going on and I realized that you're on your laptop because you want to be able to watch your son's blood sugar on your phone.
Sponsors & Supplies Break
Scott BennerAs I told you earlier, Able Now is sponsoring this episode. Able Now, of course, tax advantaged Able accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs. Many people in the diabetes community do.
Scott BennerWith ABLE now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. And thanks to updates to federal law, ABLE accounts are now available to more people than ever before. That means more individuals and families can use ABLE now to save and invest. Funds in an ABLE now account can be used for a wide range of everyday needs, including education, transportation, health care, assistive technology, and more. There's no enrollment fee, and you can open an Able Now account with a small initial contribution and build from there.
Scott BennerLearn more and check your eligibility at ablenow.com. That's ablenow.com, ablenow.com.
Scott BennerI 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.
Scott BennerUsmed.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 Dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over one million people with diabetes since 1996, and they always provide ninety days worth of supplies and fast and free shipping. US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs, like the Libre three and Dexcom g seven.
Scott BennerThey accept Medicare nationwide and over 800 private insurers. Find out why US Med has an a plus rating with the Better Business Bureau at usmed.com/juicebox, or just call them at (888) 721-1514. Get started right now, and you'll be getting your supplies the same way we do.
Managing Toddler Blood Sugars & "Vibe Bolusing"
SabrinaOh, yeah. I don't stop watching it. I didn't I mean, it's been, like, a whole thing even, like, at the yoga studio I go to is I I, you know, I wrap it in a T shirt and I, like, hide it. Because I we loop, so, like, I can see everything now. The other you know, beforehand, it was, like, harder, like, you know, following is, you know, the technology.
SabrinaI find that, yes, as much as I need the mental break, well, like, for that hour, I'm swimming or working out or whatever. Like, I get, like, one hour every twenty four hours kinda to myself. Yeah. Maybe. I find that I'm able to step in and take over and manage him so much better when I've been watching the trend.
SabrinaLike, okay. I know that he had this for breakfast. How did it affect him when I gave him eleven units today instead of twelve units? But I gave him two blackberries, you know, before I left, and now he's now he's five points. Okay.
SabrinaMaybe if I gave him this, and I'd like I don't know. It's like an experiment every day. But I people I
Scott BennerDiluted insulin so they're not confused while you're talking.
SabrinaYeah. Yeah. Yeah. Yeah. Sorry. That's a huge thing.
SabrinaSo he's on u ten diluted. He's been on that since diagnosis. As much as every you know, I've it's been encouraged like, oh, well, maybe it could go, you know, go to u 25. Our pump regularly throughout the night will give point zero five, you know, just to kinda keep them stable. And I give him point one.
SabrinaI probably give him seventy doses throughout the day. Like Oh. Big doses, tiny doses. I manage it like I'm the algorithm.
Scott BennerOh, you you're gonna make yourself crazy.
SabrinaI'm gonna make myself crazy. But he's, you know, for the most part minus here or there, he's pretty stable, and it's very hard anticipating a toddler. I know eventually it won't be this difficult. But but yes. No.
SabrinaI, I am his pump.
Scott BennerYeah. Well, listen. I did it for a long time too. I can't I can't scold you. So Yeah.
Scott BennerHow come while we were getting set up, your your husband's with him? And that just in the last fifteen minutes, you've described this boy as, like, perfect. This you've met him. You knew right away he's your best friend, blah blah blah. And then you just need an hour to talk to me and you don't you can't trust it?
Scott BennerOr what's the thing? Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a one c on this podcast. Did you know that the Omnipod five was shown to lower a one c? That's right.
Scott BennerOmnipod five is a tube free automated insulin delivery system, and it was shown to significantly improve a one c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod every day since she was four. It has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod five for yourself or your family, use my link now to get started. Omnipod.com/juicebox.
Scott BennerGet that free Omnipod five starter kit today. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox.
SabrinaYeah. Well well, we just had a little I don't even know. I there's been, I think, three nights since we've been home from the I mean, he's been he this has been going on now. We've we're on, like, over a year and a half now of of diabetes stuff. One time, I was so sleep deprived after the hospital.
SabrinaI think two weeks in, I dosed him eight units diluted instead of eight carbs, and that completely that was the most insulin we'd ever given him. So we were, like, having, like, a complete I mean, granted that's, like, a quarter of a banana in the middle of the night. You know? Like, even that's even too much. And then last night, what I had kinda mentioned was and my husband woke me up to be like, there was a 192 carbs were inputted.
SabrinaI don't even know how because I only dosed him point two. So I think that it somehow, like, with the phone, because I leave the his transmitter open, I don't even I still I can't try to figure I'm trying to, like, recreate it because it even gives you a warning. Like, are you sure you wanna do this? And I'd have to press yes. And, like, that's not how I dose him at night, so I'm still confused.
SabrinaSo we're fighting a low blood sugar right now. So not watching his sugars is
Scott BennerK. Couple things.
SabrinaI don't know. Yeah.
Scott BennerHow low is he?
SabrinaHe went I mean, the Dexcom was saying 42, but I was starting to feed him half a juice box grapes leading up to that. It's just, ten units in the middle of the night is a lot diluted again.
Scott BennerDo you want to look right now and take the phone away and check his blood sugar? Go ahead.
SabrinaSays fifty five. Hold on. He Leo's probably okay. But all his POPs were you know you know, it that's that's the issue with technology. Right?
SabrinaSo Dexcom could say 51, and he was at 68. You know? So I'm constantly cal you know, recalibrating.
Speaker 3Oh.
SabrinaBut he he should be okay right now. We gave him some maple syrup, which we almost never give in his gum. So it was
Scott BennerHow long has he had diabetes now?
SabrinaSo he was diagnosed at 10 old. So it was 09/20/2024.
Scott BennerWhat do you what do you weigh at 10 old?
SabrinaOh my gosh. I should know this. He's twenty
Scott Bennersix
Sabrinapounds right now. I don't even know. Nineteen eighteen eighteen pounds? I don't even know. Wow.
Zevi's Harrowing Diagnosis Story
SabrinaThat's too much. I don't know. Yeah. Pounds? I mean, tiny.
SabrinaHe I had noticed maybe, like, about four days beforehand, five days, I remember him napping.
Scott BennerMhmm.
SabrinaAnd I kinda like or he was, like, playing around like, kinda rolling around, and I was like, man, you're kinda, like, losing some of your baby weight. You know? Mhmm. And I could, like, kinda, like, see his rib cage a little bit more, and he's he's my husband's side. But in terms of, like, you know, he has, like, you know, little chubby cheeks, and his arms have some, like, cushion to him, and he's just ugh.
SabrinaYou just wanna squeeze him.
Scott BennerYeah.
SabrinaAnd I didn't really think anything of it. You know? We honestly stumbled. Like, I had no idea. Like, I didn't even know what diabetes was, if I'm being frank.
SabrinaI I truly had no idea what insulin was. This was I laughed when our pediatrician I brought him in. So it was I think on a Thursday, he started having this, like, you know, the breathing.
Scott BennerMhmm.
SabrinaAnd I thought that because he had fallen into, like, his playmat. And I was like, man, maybe he, like, punctured a lung. You know? I'm like a first time parent, so everything's like I don't know. You know?
Scott BennerI hear you. He probably fell and got some crazy disease. Yeah.
SabrinaYeah. Yeah. Exactly. Mhmm. So I'm you know?
SabrinaBut at the same time, I'm like, I'm, you know, I'm with him every second of the day. So I'm just watching him. But that afternoon, we live very close to the beach. So I walked him down to the beach, and he's, like, crawling into my lap to, like, lay down
Speaker 3Mhmm.
SabrinaLike, the whole time. And I'm going and he's, like, falling asleep. Like, we had just woken up from a nap. He's, like, doing his head shaking, like, to fall back asleep. And I say to my husband, like, I something does not feel right.
SabrinaLike, I I I don't this doesn't make sense to me. Like, what is his breathing? Like, his belly? Like, does he does he have RSV? That's what also popped in my head.
SabrinaSo I reached out to his pediatrician. We went in that Friday morning worried, you know, about Monday morning. Like, if I waited the whole weekend, and what if he had a virus? You know? Not that you can really do for anything for a virus, but never you know,
Scott Bennernevertheless So You don't wanna get stuck over the weekend not having access.
SabrinaSo I we I took him in, and I actually let him nap in the car on the way to the p d like, I was driving circles trying to get him back to sleep. Mhmm. And then I took him in, and and he was, like, you know, awake. And they're like, I was apologizing, Gwen. I know I'm wasting your time.
SabrinaI'm really sorry for, like, rushing in. You know? And there he the doctor came in, and he was just stumped. And he's just sitting there. He's, like, googling.
SabrinaAnd he looked at me and goes, yeah. You he either needs a chest X-ray or he is diabetic. And I, like, laughed. I was like, he's not diabetic. What are you even talking about?
SabrinaYou know?
Scott BennerLook at his little chubby cheeks. I know. Yeah. Yeah.
SabrinaLittle chubby cheeks. And and I was going to rush home because so and then bad news, their test strips had expired because they never checked blood sugar in their office. So they tried, like, three different times, and everything wasn't working. And I was gonna run home to grab a glucose, like, meter that I had from pregnancy because I refused to do the glucose drink. So I was just checking my sugar.
Scott BennerSo wait. So you took you took the doctor seriously? Because it's funny because
SabrinaNo. I took the doctor seriously. I he said, he goes, you need to go to the emergency room right now. I'm gonna call Mission. And I say, okay.
Scott BennerI just think it's interesting because you again, I know you for twenty three minutes.
SabrinaBut Yeah.
Speaker 3You feel No. I usually don't listen.
Scott BennerYeah. If you feel like a person even would've looked and been like, this asshole's googling. He has no idea what he's talking about. I'll get out of here and figure this out on my own. But
Sabrinayou Yeah. No. I I no. I I normally, I'd be like, I'm not really gonna do that, but okay. But I get in the car, and I start, you know, kinda like like, my mind's running.
SabrinaAnd he had fallen asleep on the way to, of course, because he's a DKA, to the hospital. And I even let him, like, sleep for a few minutes in the car seat, and then I, like, was like, I I should take him in. Like, I you know? Mhmm. We get in.
SabrinaWe're in triage. They're trying to tell me to go home. They're like, nothing is wrong with him. He is so healthy. You should go home.
SabrinaYou're gonna waste your time. And I was like, my doctor really, really, really wanted me to get his blood sugar checked. Can you just do that or chest X-ray, you know, and or Yeah. They're like, truly, you're wasting your time. But if you really wanna wait, okay.
Scott BennerSabrina, neuroses to the rescue.
SabrinaI know. Thank god.
Scott BennerRight? The boy is gonna kill you. But it saved the boy.
SabrinaNo. I I mean, I because he perk you would have he hides it very well. Like, it's very hard to know when he's not feeling well Sure. Which yeah. So, anyway, so my husband shows up.
SabrinaWe're just kinda playing in the, like, kid's room. An hour goes by. I have probably bothered them, I don't even know, three or four times. Like, can you please check the blood sugar? Can you plea you know?
SabrinaMhmm. Can you please do this? They come in. They for COVID, everything else. We go back into the little, whatever, you know, lab area, and they check, and I see five forty pop up.
SabrinaAnd I'm like, I don't understand anything about blood sugar. Right?
Scott BennerYeah.
SabrinaAnd I'm like, but that doesn't that doesn't make sense because that's not what my blood sugar was when I was checking it. Right?
Scott BennerSo you had something to compare
Sabrinait conscious person. Like, I under I I know wellness. But I this was, like, so out of my wheelhouse of, like, he's a baby. I don't know. You know?
SabrinaAnd they think their machines are broken. So they rush us to another room, and then it's even higher. And then all of sudden, it just so we went from
Scott BennerYou should go home. To where where where little Zebi would have probably died in his crib, by the way. And Yeah. Yeah. Right.
SabrinaHe would have he probably would have died within a few hours. Yeah.
Speaker 3Jeez.
SabrinaAnd you would have no idea because he was just, like, you know, smiling and playing with us for the most part, you know, other than the you know, one of the ER doctors came in being like, this is impossible. You know? And then I they must have called, the Children's Hospital, and they didn't even want a chance taking him in an ambulance, so we, got helicoptered over there.
Scott BennerThey went from sending you home to putting him in a helicopter.
SabrinaI know. Yeah. No. It was very, he was I, like, I don't sit back and think about I mean, I think about it in, like, when I'm, like, snuggling him at night kinda thing. You know?
SabrinaYeah. I just don't, yeah. I I Serena, that would Worst worst afternoon of
Speaker 3my life.
Scott BennerYeah. Okay. Well, the worst days when you met the boy because that's what put this all into emotion. But you you were so okay by yourself, by the way, dating a lot, having a good time. You probably had a fabulous little place you lived in.
Scott BennerAnd, right?
SabrinaBut Yes. No. I I loved my house.
Managing Expectations & Navigating Burnout
Scott BennerWhat kind of business? You said you have your own business. We had a like, what type of business is it?
SabrinaSo I'm a writer by trade, but COVID really changed. So I always stopped, like
Scott BennerYeah.
SabrinaDoing, like, marketing con you know, I'm a I I have, rental properties. So I have, like, a little, like, you know, rental landlord business of sorts that allows me I'm, like, full time mom. But
Scott Benneryou.
Speaker 3That's
Sabrinaawesome. Of you know, I can work from my phone unless I have a move out clean or something or, you know, there's a sewage leak in a unit, which happened a year and a half ago.
Scott BennerI was gonna say you didn't just make that up.
SabrinaNo. That was a whole thing. But very few days a year do I, you know, leave Zebi for, you know, five, six hours to to get to a property if I can't, you know, obviously take him in those kind of situations.
Scott BennerHow how much of his diagnosis story fuels how you are today, or is this how you would be? I'm And not judging you, but is
Sabrinathis This is how I would be, but it, honestly, I you know? I mean, trust me. It's like a cons I people criticize. I I appreciate how I am because I wouldn't I wouldn't be able to manage him. I mean, listen.
SabrinaCompared to it's incredibly challenging with an infant. It's incredibly challenging with a toddler. I mean, the the couple hiccups the last couple weeks have been going to his friends and then setting them setting, like, snacks out and, like, not understanding how much is he gonna eat of that and then bolusing too much and then not bolusing enough and Yeah. Just got you know, just it's very chaotic feeling. It's not, like, enjoyable, you know, for me.
Scott BennerYou are gonna go through every station of diabetes almost. Like, every freaking one of them.
SabrinaAnd I understand every different, like, phase has its own challenges Yeah. For sure. I mean, I've seen the different it's but in a nor you know, I mean, the kid eat I mean, we we stay away from wheat products. I just find grain to be so difficult to manage. I mean, we I mean, we've stayed up ten hours one night after pizza.
SabrinaIt was just like, this is not worthwhile in my, like, my opinion. It's it's so chaotic, and then it the fear of low you know, of, like, a really a dangerous low.
Scott BennerWell, it's such a a small amount of insulin too that does such a big it has such a big impact on Exactly.
SabrinaI mean, an extra point one can if you're last summer, we were my parents live in Michigan, and we were out there for a week. And we weren't looping at that time. We were on just the the o p five.
Scott BennerMhmm.
SabrinaAudi pi five. And in the middle of the night, I I out of nowhere, his Dexcom wasn't connected. It was like a brief sensor issue. And for some reason, the pump was giving him audible listening point 3.2, point two, which is not, again, diluted. So that's point zero three, point zero two, like, teeny amounts of insulin.
SabrinaBut for him in the middle of the night, it's massive. And I didn't wake up to an alarm until he was around 60, gave some juice, didn't stop, was 44, and then I finger pricked, and he was 22.
Scott BennerCan we take a left turn for a half a second? For those of you listening who don't know Jewish people, some of my wording will sound weird to you. But Jews in Michigan. So, like and Zevi, are you guys, like, Ashkenazi or Hasidic?
SabrinaNo. Not at all. No. Not religious whatsoever. Yeah.
SabrinaNo. We're, we're Ashkenazi. I'm, very culturally Jewish. Both sides of my family are, like, very Jew like, Jewy of Jew, but not, you know, at the most reformed temple. Zevi means wolf, which was, like, I each family member in my family like, growing up, we had, like, these animals at our lake house, like, painted on a cabin, and I was the wolf.
SabrinaIt was kind of thrown out as a suggestion by my mom for a name, and I only know of one Zevi.
Scott BennerOkay. Because you threw me when you popped on the camera, that was your hair. And then you said his name was Zevi, I was like, none of this is making sense to me. So I and by the way, my friends who are listening who are Jewish are so proud of me right now for pulling this apart. And the rest of you are so confused.
Scott BennerSo I'm sorry. Yeah.
SabrinaYeah. So confused. Yeah. So confused.
Scott BennerBut okay. Alright. Oh, okay. Awesome. So you just like the name?
SabrinaOh, I just love the name. Yeah. I just thought it was unique, and it it in Hebrew, it's, like, stands for loyalty and family.
Scott BennerMhmm.
SabrinaAnd I wanted to name it name him in a way, like, honor my dad's parents.
Scott BennerOh, nice.
SabrinaHad not yet been, like, recognized for by the other grand shit, like, in their names.
Scott BennerOh, I see.
SabrinaAnd they were very, very family oriented, very loyal. Like, that was kind of, you know, what, you know, defined them. So Lovely. It was, you know, kind of a tilt to my dad. So Tell me how
Scott Benneryou see this going. Because I imagine you have game plan this diabetes out to your death and already figured out who to put him with if you go like, you probably got this worked out six ways from Sunday.
Speaker 3So You
Sabrinaknow, it's funny. I I don't I I future trip, but I'm not like a like, I used to just book a one way ticket somewhere and just, like, arrive in Guatemala and be like, where am I
Speaker 3staying? Yeah.
SabrinaSo I don't always I have plans for sure. It's more just like, I know this is working right now, if that makes sense. But I think about him my goal is to involve him as much as possible. Like, he knows how to check his sugar. I mean, does he do it perfectly?
SabrinaNo. You know, he kinda moves his hand too much. You know? But I he helps me with his pump changes. He helps me with his Dexcom.
SabrinaHe knows all his you know, everything that's going on for the most part. There's a lot of guessing of what he'll tell me what he wants to eat, but it's like, but are you gonna eat that? Are you gonna decide in two minutes that you actually want apple and peanut butter, but I only dosed you for the scramble, you know,
Scott Bennerthat
Sabrinakind of thing? Yeah. So as he gets older, I think that part will feel a lot easier that the dose is not I'm gonna give you twelve units, and if you don't dilute it again. So twelve sounds probably massive for his size, but it is a big dose in breakfast. But breakfast, he just needs, like, two, three times more than any other time of day.
SabrinaBut if he doesn't want that, then I know that he's always gonna want, like, two grapes. You know? And, also, ten units is there's I I don't carb count, really. I mean, I kinda do, but I don't I don't use, like, ratios. I kind of, like, look at I don't know.
SabrinaI have, like, made up my own way to do it.
Scott BennerYou're vibe bolus thing.
SabrinaI literally vibe bolus. I kinda look at it, and I go, well, you have this much on board. You were just running around. You're about sleep in two hours. I don't want you to have too much in you, but I need you to have enough to avoid that.
SabrinaAnd then I think that you're gonna probably want some Larabar. And maybe, you know, maybe you'll have a little bit of this, and this looks like two units, but this really needs five units. And I I don't know how to explain to someone how it which is the reason that no one else can really take care of him. His main ability much.
Scott BennerThere's too much nuance. And and I would imagine too that it's probably the height of as soon as you figure something out, something changes too.
SabrinaEverything change. I just also discovered I I think this is what it is because I can't make sense of it. Otherwise, I thought he was getting sick constantly, like, almost getting sick and not showing symptoms. I didn't know that you could have growth hormone spikes during the day. Mhmm.
SabrinaSo all of a sudden at, like, around 10AM, not every day, just all of a sudden, so I have to, like, be ready for it. He could need an extra eight to ten units. But I also that one time that I was like, okay. This is it. And I bolus six units up front, he tanked because it wasn't that that day.
Scott BennerYeah.
SabrinaHe's So there's just so many
Scott BennerYou what? What's the u you're using? The
SabrinaHumalog, you mean?
Scott BennerNo. The u 10.
SabrinaU 10. So it's one tenth. I'm just gonna look at his sugar real quick. Okay. He's up at ten eighty
Scott Bennerthree now. So you're using u he's using u ten right now?
SabrinaU ten. Yes. So it's tenth the strength of normal Humalog.
Scott BennerRight. So a a unit of your bolus insulin
SabrinaIs point one for most people.
Scott BennerIs point one for most people. Okay.
SabrinaWhich is like, so when people say to me, like like, I I follow a lot of different, like, type one. That's kinda how I use social media. It's either that or, like, parenting. Like, put this activity together in the morning kinda thing. I surprise him every morning with something.
SabrinaSo I follow type one stuff because it's very educational piece. So, like, your podcast Facebook group and the diapers and diabetes one. Yeah. And mom's a type you know, that kind of thing. And then I follow some, like, this Addy t one d.
SabrinaI don't know what her thing is, but I like watching her stuff because
Scott Bennerdark hair. Right?
SabrinaYeah. She has dark hair, and she runs. And it's fascinating to me to see how her blood sugar is affected with running. And, you know, I think that she kinda smart carbs it, but at the same time kinda goes for it when she's, like, traveling, which is not necessarily exactly how I eat, but I want Zebi to feel like he has more free I mean, I smart carve it kinda with him. You know, I just thought you know, I mean, that's just how I would feed him probably anyways.
SabrinaLike, I don't give him junk food. But
Scott BennerDefine that for interesting to find. Define smart carb.
SabrinaI guess I don't really even know. I I just try to feed him whole foods.
Speaker 3Okay.
SabrinaSo we still have dried mango, but I'm not giving him I'm not feeding him goldfish. I'm making flaxseed homemade crackers or almond flour crackers. Or I'm making you know, we have cupcakes, but I make it with egg and almond flour and a little bit of maple syrup. And he needs a lot of a decent amount of insulin for it, but there's no spike. So it's just like a hefty temp basil for, like, two hours kind of thing.
Scott BennerTrying make mango sounds good. Do you make that yourself, or do you buy that?
SabrinaNo. No. No. I buy it, but this is where I used to give
Scott Bennerit to him. You for a second? I love when you laugh at yourself when you know you're about to say something, and most people are gonna be like, what is this lady talking about?
SabrinaWhat is this lady talking about? She's insane. Yeah. No. I I get it all the time.
SabrinaPeople just kinda like, you know, like, really, Sabrina? Well, so what I do is I take, like, press and seal, and I rip off little pieces. And he has to open each it's the only way that I don't have to dose him a massive amount of insulin, and, yeah, I can sugar surf while he gets dried mango.
Scott BennerWait. So what do you like, you've you make him get it out of the package himself to make create
Sabrinatime? Like I like I like prep it where, like, I break it into pieces so it's, like, individually wrapped, basically. Okay. Because, otherwise, instead of having to give him fifteen units for one piece of mango that he'd eat in a second
Scott BennerMhmm.
SabrinaHe can typically almost not get dosed if it's on the tail end of the dose. Like, if it's peaking and he has 10 units still on board, I can just give him a handful of, you know, like, little tiny wrapped mango bites.
Speaker 3Uh-huh.
SabrinaAnd he'll, like, unwrap them, and he likes collecting and throwing in the trash.
Scott BennerYou you must love the way I talk about insulin.
SabrinaSo you're bold with insulin episode. I was doing that. I just didn't understand what I was doing. Does that make sense?
Scott BennerNo. I hear it when you're talking.
SabrinaAnd so when I had a friend. I haven't seen him in forever. I was gonna say his name, and
Speaker 3I was like, don't say his name.
SabrinaWhy no one knows who he is. I understand what you were saying earlier now. But his daughter was diagnosed at three. So when Zevi was diagnosed, another a mutual friend was like, you should reach out to him. You know?
SabrinaAnd, of course, I had no idea that his daughter had been diagnosed. And I we text here and there, like, you know, oh, you could, you know, try this for the pizza crust, or try this for, you know, whatever. And he was the one that was like, you should listen to this bold with insulin because I was already kinda, like, sharing with him how we've been approaching it.
Scott BennerYeah.
SabrinaBecause I as much as Lowe's give me anxiety at not really. But in sir, if if there's a lot on board, I'm like, shoot. You know? What am I I have these little gummy packs. Like, they're just, like, Solier, I think, is the brand.
Speaker 3Mhmm.
SabrinaAnd that that can handle anything. But
Scott BennerIt's like jet fuel.
SabrinaIt's jet fuel. Yeah. That I mean, it takes a second, and once it kicks in, it's like, oh my gosh. You know? But I can handle it if it's on the tail end.
SabrinaRight? Everything's just, like, on timing. But I the highs, I mean, he's almost never high. So, like, he was four hours high on Sunday after our, like, a barbecue thing, and he was all right around 70 for, like, a whole hour. Like, I almost couldn't get him up.
SabrinaAnd then all of a sudden, the cup get filled. Like, he didn't need any more almost.
Scott BennerMhmm.
SabrinaAnd just
Scott Bennerand
SabrinaI thought his pump failed. I couldn't get him down. And then then slowly started coming down.
Scott BennerWas the high number? How how high?
SabrinaI think he went up to two sixty that day. So not like anything crate but, again, I'm on top of the insulin.
Scott BennerSo under so than you're accustomed to. So
SabrinaYeah. It was you know what? In those situations, it's it takes away from my ability to just connect. Like, other people might not realize what's going on in my head, but it's it is a second by I mean, it's always a second by second managing for me because I'm trying to anticipate what he's gonna wanna eat and, like, what who's gonna have food. You know?
SabrinaLike, okay. Maybe I should start a pre you know, a temp basil right now. So whatever. But it takes away from the, like, enjoyment of, like, being at these ex you know, at these parties.
Scott BennerNo. I know.
SabrinaWhen that happens because I'm like, is this pump not working? Like, did he knock it because he just tackled his friend who hit his head on the fence and Zevi has a bump on his head or Zevi just bit him on the shoulder?
Scott BennerI hear
Sabrinayou. And now you know? Yeah. So
Scott BennerI did this experiment one day where I thought for sure I'd be able to see Arden's blood sugar in her face. I took pictures of her, like, all day long.
SabrinaUh-huh.
Scott BennerAnd I would take a picture, and then I connected it to her blood sugar, Like Mhmm. Like, you know, dark circles under her eyes or anything like that. And then I put them aside, mixed them up, and then tried to guess the blood sugar by the I could never and I was like, I spent, like, two days trying to figure that out.
SabrinaOh, that's interesting. I I smell his breath, so that's, like, a big thing for me is I I'm a very big
Scott BennerYeah.
Speaker 3Yeah.
SabrinaYeah. It's it's a it's the weird like, that, like, a nondiabetic parent would never understand of, like, trying to figure out these little quirks to, like, you know, oh, maybe I'll be able to see it before, you know, or maybe I can smell it before you know?
Scott BennerAnd then I got by the way, got to the end of my experiment. I was like, well, that's not valuable. So like, but I was just looking
SabrinaThat's good to know because maybe that would have come across my desk at some point, and I could be like, yep. Nope.
Scott BennerYou're looking for some way to figure it out without poking your finger. Yeah. No. That point me in a direct so my point is that I am I'm well aware of that feeling of that you're just constantly taking in all the data around you even though you don't know how much of it's actually important, hoping that something's gonna suddenly make sense or
SabrinaYeah.
Scott BennerHelp you take a leap or something like that. I I hope for you that that will slow down, by the way. Like, when he gets bigger and you can do
SabrinaI know it will. I'll you know, I'll yeah. There's just a lot that I know there'll be other challenges, of course, like puberty, all that kind of stuff. But this will he can understand I mean, he understands he just he hates waiting for I've been starting, like, trying to, like, put a tie let's put a timer on the pre bolus, and he just hates it. You know?
SabrinaYeah. And I try to make it fun and silly, but it's just, you know, no toddler wants to like, when they want something, they want something.
Scott BennerYou know? I've come to the conclusion after making this podcast for twelve years that there's nobody on the face of the planet that wants to pre bolus their insulin, and I understand why.
SabrinaThat's why I'm trying to constantly anticipate so he doesn't have to kind of suffer through the pre bolus.
Scott BennerLike yeah. Listen. I'm gonna yeah, but you just for the people listening who are like, she gotta calm down. But, like, I'm gonna tell you right now. I would just do what you're doing so you know.
Scott BennerNo. I mean, listen.
SabrinaHis a one c is 5.3. He's in range 92 to 99 a 100% of the time. His average glucose is if it's not a crazy whatever, it's somewhere between a 100 and a 105, sometimes 95, sometimes standard deviation 17 to 22. You know? I mean, he's very stable.
Looping & Navigating Childhood Illnesses
SabrinaYou know?
Scott BennerTalk about how loop has helped you with that, if it if it has.
SabrinaYeah. So, again, the loop was really with the intention of nighttime because so he was a heavy nurser before diagnosis. And, obviously, leading up to it, he was nursing like crazy, and I didn't understand what was going on.
Scott BennerMhmm.
SabrinaOr, like, I just thought it was normal, but everyone else was like, he should be sleeping through the night. And I was like, I don't know. He just wakes up to nurse seven times. You know?
Scott BennerYeah.
SabrinaBut the the nursing was what used to I mean, I'd be up for so I would nurse him in the middle of the night, say it was, like, 12AM or something. And before looping, I would he would nurse. And if his sugar wasn't high, like, wasn't above one twenty, I couldn't dose him because then he would drop low because the milk takes about thirty minutes in the middle of the night to kick in.
Scott BennerOkay.
SabrinaSo I would have to just keep myself awake. And once in a blue moon, I would fall back asleep, and then he would I would miss that window, and then he'd go high. And then it would be you're chasing the you know, you're timing insulin wrong. So I would be up every time he nurse for, like, about an hour.
Scott BennerMhmm.
SabrinaAnd which is incredibly exhausting when he's up nursing three, four, five, six times a night. You know? Typically, you know, now he doesn't nurse as often last night a couple times. Most nights, nurses asleep and then, you know, nurses maybe around five, five, 08:30 in the morning. You know, I mean, he's two and a half, so he's not using it in the same way, you know, as much.
SabrinaBut the looping, I wanted the auto bolus. Like, it communicates better with his Dexcom, and, like, I can have settings that it just it were I mean and, also, the target on o p five was at one ten. And, not that 01:10 is terrible, but if he can be running at 80 and steady with almost no insulin on board, I much prefer that to one ten.
Scott BennerOkay.
SabrinaSo it you know, once I can kinda you know, despite growth hormone spikes during the night and that takes, you know, a handful of units to get him down, and then I kinda wait till he stabilizes. But, normally, if he's just you know, it just it keep I mean, he's real steady through the night. And then there's this off nights that an extra point two that he would normally get anyways. For some reason, he's just extra sensitive, and then he goes low.
Scott BennerYeah. I love how your brain effortlessly jumps between the u 10 and the point and the actual measurement. Like or or is that not what's happening? Are you actually
SabrinaIt's point two. Yeah. But I could
Scott Bennersay point zero Okay. So point two of u 10, which is point zero two. And how much does he weigh?
SabrinaNow he weighs about twenty eight pounds.
Scott BennerOkay.
SabrinaTwenty yeah. So he there there there has been a lot of so in the last July, one of the things I had shared with you. So last July, I started at his endo appointment. I was or August, I mean, he for the lead month leading up to it, he was saying, mama, I'm tired. Mama, I'm tired.
SabrinaAnd I was like, this doesn't seem right. Like, I don't know any 20 old who's telling me that, you know, they're tired, you know, and wanting to go back to sleep. So we did some blood work in November, and only one level, like, as ALP. It was like a alkaline phosphate or something. That was, like, relatively, like, pretty high elevated, not, like, super elevated.
Scott BennerMhmm.
SabrinaAnd then by January, he basically had a month, five weeks straight of diarrhea. And I was on the phone with every doctor I could think of, every you know, trying to figure out what was going on because he was, like, itchy. And and it it was causing, like in some ways, his sugar wasn't so affected, but at other times, it was. It turns out, well, the lab at the hospital messed up the viral swab, the first ER visit, because we had to sedate him to get blood drawn because he absolutely loses his mind
Scott BennerOkay.
SabrinaIn a blood draw. He had RSV, tested positive for salmonella, and had a parasite.
Scott BennerWee.
SabrinaSo there was yeah. It was insane in this in the winter. I don't even know how because, like, I'm a clean freak, and, like, he eats really, like, fresh food. I mean, we throw out stuff after two you know? It was just a crazy
Scott BennerWell, tell me how you how's all that get handled? What what how what kind of parasite? How did they find out a parasite?
SabrinaWe were at a a GI doctor.
Scott BennerBecause of the diarrhea, they looked for that.
SabrinaBy the die yeah. So you're doing, like, a ton of stool tests, and we he ended up I'm not I'm, an antibiotic person only if you absolutely, absolutely need antibiotics, you know, kind of thing. I don't just, like, free, you
Scott Bennerknow Yeah.
SabrinaWilly nilly them. And and he went on one round, and it it has, like, turned everything around. But but it's all these little things that people when, like, when he gets sick, you know, or if he has a cold, it's it's not just like, oh, he has a runny nose. It just wreaks havoc on, like, his insulin needs can, like, triple. It's so unpredictable.
SabrinaAnd and so the winter was just insane this past winter with, like, trying to figure out everything that was going on. But so my that's where it's like, okay. Yeah. I'm neurotic, and I'm incredibly type a. But I
Scott BennerCaught it.
SabrinaI mean, I was so annoying to the endo receptionist that she literally hung up the phone on me because I had so many call tickets in. And I was like, can you just please stop speak to me a little bit kinder tone? And she hung up the phone. And I want and that was before we found out everything that was wrong. And I wanted to, like, call back and be like, just so you know, like, something was actually really wrong.
SabrinaYou know? He was very ill.
Scott BennerI was right. And you were wrong. And you should have been nicer to me. And you're not good at your job.
SabrinaI mean, he hadn't gained weight in, like, four months.
Scott BennerOh my god. Well, yeah. Yeah. That's no good.
SabrinaYeah. I mean, there was a lot going on.
Scott BennerSo My only disappointment with that story is you said ton of stool tests, I really wish you would have used a liquid measure to make that statement. But other than that, I was I was really happy to hear it. Yeah.
Speaker 3It's been
Sabrinaa lot it's a lot a lot of poop tests.
Scott BennerA gallon of poop tests, Scott. Was a gallon of them. It's funny, isn't it? Because I think it would be interest I think it would be easy for people to listen to you. You don't know.
Scott BennerAnd I'm from the Northeast, so in my mind, you're not speaking quickly. I'm actually, like, you're at a comfortable pace for me.
SabrinaAm I speaking quick? I speak quickly.
Scott BennerImagine everyone else is like, holy hell that I put this on time too by mistake. Flash? Yeah. Like, if you and I let go, like, in a in a in a just like a party situation, I imagine we'd just be talking over each other the entire time and still the conversation.
SabrinaBut I would follow the conversation. It's just like tangential. Like, it's just like it's just all over the place like this tangent, this tangent, this tangent, like yeah.
Scott BennerOnly aware of it because I know people are listening and I don't like to put voices over top of each other. But if you and I were just speaking, I I know that when I'm talking and you're talking, we're both hearing each other.
SabrinaSo No. I'm I yeah. I well, so I apologize to anyone who's speaking.
Finding Balance & Looking to the Future
Scott BennerI'm making the point that the bigger point that to some of the people listening, you sound like you're out of your mind. But I also raised a two year old with type one diabetes, so it doesn't sound crazy to me. And look at all the things that you've figured out along the way by being this attentive. And so while I think some people might be like, oh, she's gonna burn out, I don't know that you will. You might this might just be how you are.
SabrinaI it's kind of how I am, but also doing all of this is I mean, I manage it so like, I just under I can I I understand how his body's re the difference of even just six months ago for me is massive?
Scott BennerYeah.
SabrinaIt it ends up allowing me to give him, like, a steadier, like, day to day because I know how to anticipate and manage it. Does that make sense? Like, it causes me less stress to to have done all this work in, a neurotic way to figure it out as opposed to just, oh, let's just go on a roller coaster.
Scott BennerYeah. No. No. No. I agree with you.
Scott BennerDo you imagine yourself, like, this getting less lesser as time goes on? Like, do you want to be looking at it less moving forward? Yeah.
SabrinaI think when I don't know. I mean, I I hope so. Some of that will be, mom, I want one slice of pizza. You know? I want you you know, I want this.
SabrinaI want you know, the because I if he wants more, I give him more. I might say, like, you know, if I don't have the insulin pre bolus and I know he's about to nap, I do kind of fib of, like, oh, we're out of Larabars. You know, we don't that was that was all we had, you know, that that half.
Scott BennerMhmm.
SabrinaBecause I don't want him to go low during his nap. Like, he he he'll either skyrocket and I don't give enough, or he'll go low, and then I'm disrupting him and it's you know?
Scott BennerYou're giving me PTSD thinking about, afternoon nap time. Jesus. Ugh.
SabrinaThe naps are just I mean, when when he stops napping, I feel like the days will even be so much I understand. I like, I'm so hypervigilant with it.
Scott BennerMhmm.
SabrinaIt makes the day so much easier when I'm just, like, on it, if that makes sense. It's so much more stressful when I'm not watching it diligently because something because he is so sensitive. I mean, he shot up to two seventy five a week and a half ago or two weeks ago at our friend's backyard because I was 50 feet from him, and he wanted strawberries. I didn't bolus him right in that moment, and he had two or three strawberries.
Scott BennerMhmm.
SabrinaAnd he had 10 units on board already.
Scott BennerIt didn't matter. Right?
SabrinaAnd it didn't matter. Yeah. And so then I spent four hours trying to safely bring him down before bedtime versus if I just was right there and maybe he It just wouldn't have happened. And and because I can't expect other people to understand you know, I I yeah. Does that
Scott Bennermake sense? Yeah. You're gonna sound crazy to people who don't know know about diabetes. Yeah. Yeah.
SabrinaAnd I trust me. I hear it all the time of, like, you need to let other people take care. And, like, how? He's dropped from a 100 to 44 in ten minutes, and he there was, like, almost no reason.
Scott BennerYeah. What are you gonna do about it? Because I'm the only one staring at him like this.
SabrinaCheck his blood sugar manually.
Scott BennerYou're his own personal AI assistant. You you know everything. Like, you have a you have a large language model of, you know, information about his diabetes. But I'm telling you a couple things. Listen.
Scott BennerI'll pass on a little bit of of of my
SabrinaYeah. Please do.
Scott BennerMe and my it is gonna get easier. You are gonna need to let go as time goes on. Somebody is eventually gonna be able to watch your son for you, and you're gonna be able to go Yeah.
SabrinaFor sure. Well, also, I'm hoping by including him that he'll be, like, part of his own management.
Scott BennerI hope so
Sabrinatoo. You know, sooner than later, you know, that he can say, oh, well, you know, I'm gonna have this. I need a bolus this. You know?
Scott BennerJust keep in mind that is kinda like hippie dippie as it's gonna sound. So you can only put people on a path. You can't make them do something.
SabrinaFor sure.
Scott BennerYeah. Yeah. So Yeah. Yeah. There's gonna be an episode that comes out in a couple of months.
Scott BennerAnd it's recorded recently with this mom whose kid was diagnosed at, like, 15 years old. And this kid's, like, you know, athletic on the ski team at school, like, you know, having a nice little life diagnosed with type one Mhmm. Quickly tumbles down a rabbit hole, drinking, drugs. They just send him off to a place, like, not a thing they thought was gonna happen to him. And and even as he and he's a thoughtful kid.
Scott BennerLike, it's not like, he was just you know, he's got ADHD. He was probably self medicating, you know, but it it tumbled quickly on him. And my point is is that, like, a, you know, a year before that, that was not on their radar at all. Mhmm. And even as they're trying to help him and he's open to the help, it's still, like, people are really on their own course and you can only do so much.
Scott BennerSo I say, like, I like everything you're talking about, but if it doesn't go exactly the way you're imagining it, you're gonna have to be flexible and and bend with Zevi and do you know what I mean?
Speaker 3Oh, for yeah.
SabrinaI I hear what you're saying.
Scott BennerYeah.
SabrinaYeah. No. I I think I I my goal is to show up how he needs me. Does that make sense?
Scott BennerNo. I think you're gonna do a good job.
SabrinaYeah. It's how I think is best, you know, because he's two.
Scott BennerRight.
SabrinaRight. You know, I mean, listen. I I I want an athlete. He might just be a musician, you know, in which I was a musician too. But, you know, I I you have to I I hear what you're saying.
Scott BennerYeah. You can only do what you can do.
SabrinaIt's very hard when it it is relay directly related to his health.
Scott BennerOh, I know.
SabrinaKeeping him alive. You know? So when people are like, oh, which I know you know. Yeah. It's when when, you know, people I mean, I constantly hear it from especially family of you know, who don't live by us.
SabrinaSo they've not really seen the day to day and understanding, you know, well, someone has to be able to watch them, and it's like, I don't think you understand how nuanced this is.
Scott BennerI exactly right now.
Speaker 3It's yeah.
SabrinaIt's just not.
Scott BennerYeah. Listen. I'll tell you that this too. Like, I'd I'd be remiss not to tell you. You need to sleep more than you think you need to.
SabrinaOh, I I know. My sleep is, I'm so much better than it used to be, though.
Scott BennerGood. Good.
SabrinaGood. So much. Yeah. No. I yeah.
Scott BennerMy expectation is you'll look back one day and just see this as a fraught time that you put a lot of extra effort into because it needed it, and then you backed out of it slowly when it didn't need as much. And if you do that, you're gonna be right on. If you don't do that, then he's gonna hate you. You're gonna hate this. Like, it's gonna you'll be ragged.
Scott BennerI also you know, you're an older mom when you started, so you have no idea what's gonna happen in the next five years. I can tell you because I've been there. But, like, this, like, staying up and it's all okay, it goes away really quickly.
SabrinaOh, it's yeah. It's, I mean, I sleep so much more than than I was.
Speaker 3Okay. Yeah.
SabrinaYeah. No. I yeah. So yeah. I probably just sound cracked out.
SabrinaAnd I and I'm not a coffee like, I don't I don't take anything. So, this is just pure, you know
Scott BennerI usually say to people when they're like, oh my god. Like, I'm like, imagine me drunk or high. Like, what a what an unnecessary level up that would be.
SabrinaYeah.
Scott BennerYeah. Yeah. No. I hear you. I think you do listen.
Scott BennerYou're in a really difficult situation. It's incredibly difficult. I've been through it. I was listen. Freestyle meter, test strips, syringes.
Scott BennerThey didn't even give me half unit syringes right away. I had to, like, find out those existed. And the Lily red glucagon box. That's what we had in the house. Yeah.
Scott BennerSo and Levemir and it was Lantus at first and NovoLog. I think we figured out the Lantus was burning. She like, it stung her, so we moved
Sabrinato Levemir. Had you guys didn't they didn't have Dexcoms when she was first diagnosed. Right? Yeah.
Scott BennerNothing like that.
SabrinaThat to me, that is I mean, we still finger poke a lot, but that is like I mean, it it literally saved his life in the hospital. I mean, every I I couldn't I would be poking him 200 times a day I mean, 300 times a day.
Scott BennerI had it down to about 13 to 15 if you did in in the right places. Yeah. Yeah. You know, I've told that story before. Like, when I hold Arden's hand, like, I realized I've held Arden's hand through, like, every day of her life almost Yeah.
Scott BennerYou know, because of the finger pokes. And it's funny now. Like, I mean, she still does them, but it's not obviously, you're not doing it 13 times a day anymore.
SabrinaYeah. Yeah.
Scott BennerIt's just it's a I I don't use this word hardly ever, but those things are a blessing. Like, that's why when I see people, like, get about them online, I'm like, you'd you know, be careful what you wish for because
SabrinaFor sure.
Scott BennerYeah.
SabrinaYeah. No. I I mean, I was pretty frustrated last week. I it was just the amount of, like, this one failed. This one failed.
SabrinaThis one failed. At the end of the day, I'm so I mean, when people say they, like, leave the hospital without them, I'm like, what? Like, I I would be, like, banging on the door. I I I mean, the first moment you're diagnosed, you should get a Dexcom on you. Like, I I had a pump on him within, I think, days six or seven in the hospital.
SabrinaIt is unbelievably helpful. It's just what also it gives you is a ton of information, which I love, but I do go back to, like, the whole ignorance is bliss. Like, I understand why people weren't so hands on years ago because you just didn't know what was going on. You know?
Scott BennerThis really is, I think, a thoughtful story, but if I hope no one can attribute it to anybody. But a long time ago, I knew a person whose child had type one diabetes, like, way before the game. Like, you know, like, way before, you know, probably ten years before Arden, you know, whatnot. And that person, when CGMs first came out, they were, you know, pretty vocal about, like, you people are out of your minds. My kid has, you know, been living with this forever.
Scott BennerYou don't need these things. They're gonna make you crazy. The people are staring at these numbers all the time, blah blah blah blah blah. You don't know. It's easy.
Scott BennerBlah blah. Then one day, their kid as an adult gets one of those things. And then they pivot to, like, these things are amazing. They're magical and blah blah blah. And I'm like, oh, okay.
Scott BennerI remember you saying, what are we all doing? But whatnot. And now more recently, their their child has, as an adult, shared their having a complication already at a fairly young age.
SabrinaYeah.
Scott BennerAnd I I of course, that's I that's terrible, and I don't wish that on anybody. But I think it's just a good example of, like, you only know what you know.
SabrinaYeah. I agree.
Scott BennerYeah. And people get defensive of the way we did it all the time. Like, oh, you don't know the way I did it. It was much better. Like, I could if you want me to tell you how much better Guns N' Roses is than Sydney Sweeney, I can absolutely tell you that.
Scott BennerI don't know if it's true or not. I just how it feels to me. And and, you know, because I lived through a certain era. When it comes to this, people can call you crazy if they want to. Okay?
Scott BennerBut you your kid's gonna have a far less likelihood of a complication because of the effort you're putting in right now. Now that's up to you and your husband to decide if that's a fair trade off for your life. My wife
SabrinaIt is. It's not even, like, a second thought. But yeah. No. I Yeah.
Scott BennerThat's That's how my wife and I thought about it. I I as soon as Arden was diagnosed, I would say to myself, like, alright. Look. She didn't ask to be here. We did this.
Scott BennerLike, we brought her here. And now this happened. It's beyond anybody's control. This is gonna take an extra level of effort from me now, and that is gonna mean that some things that I expected from my life are not gonna happen. And Yeah.
Scott BennerI gotta be and I have to find a way to do that without being shitty about it to her or to anybody else. Otherwise, I'm just gonna create a different problem somewhere else. So the way I used to say it is, you know, you find people all the time when they're talking about having babies or they're pregnant. They're like, oh, you know, I'd throw myself in front of a bus or somebody shot at us, I jump in front of the bullet. And some people jump in front of the bullet and some people don't.
Scott BennerSome people hear the gun and go, oops. I couldn't get there in time. And you Yeah. You you decide which one who you're gonna be in that, but be honest about it at the very least. Like, I love how forthcoming you are about it.
Scott BennerYou're just
SabrinaOh, no. I am I I am not trying to hide the fact No. Literally do anything. I have Zevi just came in here. We woke up a little.
SabrinaAre we upset? He just wanted me. Makes sense. You wanna say hi? Say hi, Scott.
Scott BennerZevi, how are you, buddy? How was your nap?
SabrinaMy we well, we just woke up from the morning, and I think that we are just wanting mama.
Scott BennerOh, this is this is the morning wake up. Oh, yeah. You're in the West Coast.
SabrinaYeah. We I yeah. I've been up with where are we at? 76. Okay.
SabrinaYeah. It's still this
Scott BennerLook at you. You fixed the you fixed the low, and you have him at seventy six.
SabrinaYeah. That's great. It's but, yeah, he's it's
Scott BennerHe's gonna be hungry.
SabrinaYeah. He's gonna be hungry.
Scott BennerYeah. What's for breakfast?
Speaker 3How you doing? I don't know. What's for breakfast?
SabrinaYou want green eggs?
Speaker 3Yeah. Should we make green eggs? Yeah.
SabrinaDo you want you know what
Speaker 3we haven't done in a while is waffles. Yeah. Should we make a waffle this morning? Yeah.
Scott BennerWell, you're gonna make me cry. I feel so old.
SabrinaThere you go, bub. There's a little bit of juice. Yeah. He's still kinda he went up a little bit. Not really.
SabrinaI don't think he even went above 90.
Scott BennerWow. Yeah. It was well, you you said he got too much insulin.
SabrinaUnit. One normal strength unit
Scott BennerRight.
SabrinaThat was given.
Speaker 3Is how
Sabrinamuch it's taken to you know?
Scott BennerBut I also think great learning experience there because you have that Oh, great. Lot of insulin.
SabrinaBut I still have to, like, recreate. I'm just, like, still trying to understand how yeah. I I I mean, I am I was, like, seeing cross eyed, I know, at 3AM in the morning, but yeah. I mean,
Scott BennerI wouldn't I wouldn't spend a lot of time trying to figure out what you did when you were asleep. Just
SabrinaYeah.
Scott BennerYou know, that I don't know that you're gonna come up. I don't know that it's gonna be Just you probably did some you probably pushed the wrong buttons and Yeah. That's that. But you know? Yeah.
Scott BennerWell, I appreciate you sharing this all with them. I'm gonna let you make waffles. I think
SabrinaI gotta I gotta remember to play that song for him.
Scott BennerI think it's a sad song about death. Hold on a second.
Speaker 3Let's see.
Scott BennerBut I It's still upbeat when they sing it.
SabrinaWe we play music and sing songs all day long, so he might kinda I just won't
Scott BennerYou just won't tell him what it's about, that song. I
Sabrinawhat won't tell it's about, bub.
Scott BennerGosh. No. You know, it's so funny because I grew up with, like, FM radio, but that sounds like an old thing to say now. But I've heard that song a million times in my life and
SabrinaI did too, but you sound older saying
Scott Bennerit. I now don't know that I know what it's about. So, anyway, I really appreciate you doing this. I I have to tell you Yeah.
SabrinaNo. Thank you. I I do I do wanna say just how I don't I certainly don't listen have a chance to listen to every single episode,
Speaker 3but
Sabrinait has been it's just refreshing having information that is actually helpful.
Scott BennerMhmm.
SabrinaI I I really appreciate our endocrinologist, but we have certainly talked to other endocrinologists where it's just like, I you just don't know what you're talking about. Yeah. And having like, just connecting with, especially, other parents or have it your community is spectacular. I I just I I cannot thank you enough. So
Scott BennerWell, I appreciate it. I I'm really proud of it. I'm I Yeah.
SabrinaYou should be.
Scott BennerSounds odd to some people, but I I see how many people it helps all the time. It's really awesome.
SabrinaIt's very it's it is invaluable.
Scott BennerYeah. So Hey. Give me twenty seconds, and then I'll let you go. American Pie by Don McClain in plain terms. The song is nostalgic, symbolic.
Scott BennerLook back at the loss of innocence in early rock and roll, especially tied to the day the music died, referring to the 1959 plane crash that killed Buddy Holly, Ritchie Valens, and the Big Bopper. That's what it's about.
Speaker 3But we'll just make it about waffles. Inside. And over the garbage truck inside.
SabrinaWait in front the garbage truck inside? No. Is it in the garage?
Speaker 3On the on the sink. I think it's up.
Scott BennerHe's already planning on his day. He's like, lady plan out his day. We left some stuff outside. We gotta get we gotta get jumping here.
SabrinaWe are very, very truck heavy household.
Scott BennerSo That's awesome.
SabrinaDo you wanna say say, Scott, have a nice day?
Speaker 3Have a nice day. Have a nice day.
Scott BennerYou have a nice day too, Zevi. It was nice to meet you.
SabrinaThank you, Scott.
Scott BennerBye. Thank you. Okay. Bye. Bye.
Outro & Closing Sponsors
Scott BennerA huge thanks to today's sponsor, AbleNow. AbleNow offers tax advantaged able accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify because of ongoing medical needs. With AbleNow, you can save for a wide range of disability related expenses without affecting eligibility for certain disability benefits such as Medicaid. And thanks to recent federal law updates, more people are eligible than ever before.
Scott BennerLearn more and check your eligibility at ablenow.com. You spell that, ablenow.com. There's links in the show notes and links at juiceboxpodcast.com. This episode of the juice box podcast is sponsored by Omnipod five. Omnipod five is a tube free automated insulin delivery system that's been shown to significantly improve a one c and time and range for people with type one diabetes when they've switched from daily injections.
Scott BennerLearn more and get started today at omnipod.com/juicebox. At my link, you can get a free starter kit right now. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox.
Scott BennerThis episode of the juice box podcast was sponsored by US Med. Usmed.com/juicebox or call (888) 721-1514. Get started today with US Med. Links in the show notes. Links at juiceboxpodcast.com.
Scott BennerIf you've listened to any number of podcasts or maybe watched a YouTube video, you're very accustomed to listening to the creator of that content ask you and sometimes just outright beg you without any feeling of self respect for you to follow, subscribe, share an episode. The reason that happens in podcasting specifically is because podcast players don't have a sophisticated recommendation engine like YouTube or TikTok does. They can't watch listener behavior and then give you content that you might like. Word-of-mouth skips that line completely. It's an instantly expanding reach engine and really the only thing I've ever found that helps to keep the Juice Box podcast growing.
Scott BennerSo subscribe and follow because that the algorithm understands. Set up automatic downloads, listen to the show, but share it with somebody else. Leave a five star review. Make it a thoughtful review that the algorithm can understand. I really appreciate the time it takes you to do those things.
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Scott BennerType one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Listen. Truth be told, I'm like 20% smarter when Rob edits me.
Scott BennerHe takes out all the, like, gaps of time and when I go, and stuff like that. And it just I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired Rob at wrongwayrecording.com.