#753 Calvin and Frogs
Charissa is surrounded by type 1 diabetes.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 753 of the Juicebox Podcast.
Today, Karissa is on the show with us she's going to talk about a number of issues that she's having trouble figuring out. Krista is the mother of a child with type one, the wife of a man who has type one diabetes, and she is the daughter in law, a woman with type one diabetes. diabetes has Karissa surrounded on all sides. While you're listening today. Please remember, please remember, please boy, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you have type one diabetes, and you're from the United States of the Americas, or are the caregiver of someone with type one, all you need to do is fill out the survey AT T one D exchange.org. Forward slash juicebox. Please go do that now and helps people with type one diabetes. It helps you and it helps me t one D exchange.org. Forward slash juicebox. My voice got very strange, because i Hey, all right. You ready for Karissa?
This episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes in pen is an insulin pen that does more than you expect. Learn more about it at in pen today.com. The podcast is also sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor. Dex comm.com forward slash juicebox. And in the time, it took me to say that URL I picked up my phone opened it up and saw that Arden's blood sugar is 90, you can do that to more information in the ad that is forthcoming.
Charissa 2:12
Hello, my name is Karissa and typically synonymous with a yellow hoodie or a frog hat. I live in rural Missouri, and that's probably enough weirdness to get you started.
Scott Benner 2:27
I'm sorry, frog hat you said?
Charissa 2:29
Yes. When I joined the Guard, the guys did not know what they got themselves into. Because I showed up in a frog hat and rain boots.
Scott Benner 2:39
The the, like the government port like the National Guard.
Charissa 2:44
Yeah, the Air National Guard. Yeah, sub sect of the Air Force there.
Scott Benner 2:48
We fly planes out of Missouri.
Charissa 2:50
No, I actually joined in Vermont, and I was an aerospace ground equipment mechanic.
Scott Benner 2:56
Gotcha. So that was fine. I'll say why are we flying such like extra distance to get to the border? Like why don't we put them closer to the ocean? Shouldn't we?
Charissa 3:04
Well, actually, Missouri does have an Air Guard unit as well, as well as an active Air Force Base. They just have a different mission.
Scott Benner 3:11
Can you tell me what the mission is? Or do you not know?
Charissa 3:14
I don't actually know. I mean, I know it's like flying and stuff. How's that? Different jets? We were at 16. Although they've even the guard unit and Vermont has transitioned to the F 35. So
Scott Benner 3:26
how does that work? Is it it's not a full time commitment right.
Charissa 3:31
Now, um, it was a when I was doing it. It was one weekend, a month, two weeks a year training. And then I got to volunteer for TDY and deployments. And so I got to learn a lot and have a lot of fun with those
Scott Benner 3:43
TDY.
Charissa 3:45
Temporary it's, it's just a two week training. I should know what it stands for. I don't
Scott Benner 3:53
Okay, hold on. That's that's not a big deal. I just
Charissa 3:57
started I thought I knew something here. Like
Scott Benner 3:59
I do TD wise all the time. What do they stand for? I don't know. A big part of my life, though. I
Charissa 4:06
go somewhere for two weeks. And
Scott Benner 4:10
it's fun. Do you think you were the only person to show up that day with a frog hat on or whether, you know,
Charissa 4:16
judging from their expressions, probably guessed. They had other. They had had a few other women in their shop before. And when I when I enlisted, I wasn't the only the only girl in the shop, which was kind of cool. How long before? So I was in. So I enlisted in 2008. And then I took an active duty assignment in 2006 did that for three years, wrecked my back, moved to Missouri and so I'm inactive now, which is why I have good health insurance. But once the paperwork is processed, then you know we'll have to we'll have to shift gears there. So
Scott Benner 4:57
do you have type one are you the parent of someone with type one
Charissa 5:00
I'm a parent. My two year and a half year old son Calvin has type one and his dad has type one and also his grandmother. They were all diagnosed right around the same time.
Scott Benner 5:12
Yes, grandmother, the her son and her grandchild were diagnosed all around the same time.
Charissa 5:19
Yeah, so my husband was diagnosed first, and then like six to nine months later, he walked, my husband walks in the door and says, Guess what? My mom was diagnosed with type one. And it was it was like we had had conversations, you know, if the kids ever get type one, at least I'll be older. We don't have to worry about it. And we miss all the thinking signs. We just thought Calum was growing. He had recently had vaccinations. So you know, we attributed you know, some of the sleepiness to that growing and yeah, he went into DKA. I sent a picture of his breathing to my sister who's an Army combat medic, and she says, you know, that's not right. Take him in. And he had been vomiting and stuff, too, but he had kind of stopped vomiting. So we thought maybe that was a good sign. But yeah, when his breathing went south, that was that was the catalyst there.
Scott Benner 6:08
How old was Calvin was diagnosed. 16 months. Wow. At least two and a half now. Yep. I might call this episode Calvin and frogs. That's awesome. I know. Oh, that would make me happy. I know. Did you name him after Calvin and Hobbes? Yes, I knew you did. And I don't know you at all. And in four minutes of talking to you, I was like she named that cater for that comic.
Charissa 6:32
Oh, yeah. Yeah, my husband's a huge fan too. So it works out.
Scott Benner 6:35
Excellent. You know, I have a fairly massive Calvin and Hobbes tattoo on my leg.
Charissa 6:40
You actually said that on a Facebook post. I was like, that's so cool.
Scott Benner 6:44
You can't see it. It's my it's private. But although I could I could probably sign up with a little bit of like, lotion. Make it look a bit get look summertime ready and get it out for somebody who knows. That's fascinating. I really, I'm so pleased with myself that I figured that out so quickly. I could stop the episode right now and be completely happy with this. You all listening would be like wait, what did I download this for? But I'm completely satisfied at this point. Everything's gonna be a bonus after this. Karissa. How long have you been married?
Charissa 7:16
Um, let's see. We got married at the end of 2017. So not very long. Couple years.
Scott Benner 7:23
Yeah. Okay. Three, four years. You've been married kid? Two and a half years old and the other kids are just this one.
Charissa 7:29
Yep. Phoebe just turned 402 children.
Scott Benner 7:32
Yeah, little girl. Yep. Okay. Well,
Charissa 7:36
I wouldn't ever Phoebe if she was a boy. But
Scott Benner 7:39
listen, I don't know how to judge the world. I mean, I must
Charissa 7:43
mean, you know, if she decides at some point that yeah, gender reassignment is a thing she she could, you know, decide to keep her name and just say Phoebe as a boy. Oh, no.
Scott Benner 7:53
I'm okay with it. I don't have any opinions about anything. Do you think of that? No, that's great. I seriously thought. Okay, so little girl for little boy, two and a half. He's had diabetes since he was 16 months old. That's only maybe a year not even you're not even up to a year yet, right?
Charissa 8:14
It's been a little over a year, diagnosed October 2020.
Scott Benner 8:19
And how long has your husband had it?
Charissa 8:22
A couple of years now. Because he was diagnosed right after we moved to Missouri, it was actually a giant fluke of a thing that we even caught it. So that was 2019. Right? After Calvin was born,
Scott Benner 8:36
how was he died? How was the husband of the husband? How was that boy diagnosed that you're married.
Charissa 8:42
So he, we moved up to Missouri and I wanted to get us all into a clinic near our house. So I made us all go in for checkups, to do the new patient and processing and stuff like that. And they ran as a one C It was Hi. So they diagnosed with type two. He had so my husband is prior military as well. So he went to an appointment at the VA. And the VA nurse said, I'm not supposed to tell you this, but you do not fit the picture of a type to get tested for type one. He did and his antibodies came back positive.
Scott Benner 9:17
Okay. And then did his diagnosis lead him to understanding his mom's problem, or does she have her own sort of like, diagnosis story and how old was she when she was diagnosed?
Charissa 9:29
She's in her early 50s. And I don't know a lot about her diagnosis story, but I mean, they caught it early as well. She's still at able to manage with a low carb diet. Just trying to prolong kind of the life of her pancreas. And then I think now she does like a once a week shot.
Scott Benner 9:46
Oh, she's got some sort of a honeymoon going on. That seems.
Charissa 9:50
So they're both allotted. So it's very slow onset.
Scott Benner 9:52
Gotcha. So obviously your husband is Lada as well. Gotcha. Wow. Okay. I'm sorry, I'm stuck. There's so much there. I didn't expect I could feel I could feel my brain reordering everything that you've said.
Charissa 10:11
You know, depending on how much you want to talk about and what aspects your brain might just do this all the time, or like,
Scott Benner 10:19
Well, how was it becoming the wife of a type one? What was that? Like?
Charissa 10:27
So at first, I was kind of a jerk about it. I was like, you know, what, if your thing you deal with it, you don't want me out down your throat because I'm kind of a pain in the butt. Like, for real, I am a pain in the butt. Because I worry about everything. I will fuss about everything until I absolutely understand it. So when Josh was first diagnosed, it was like, Okay, it's your thing. You deal with it. Just let me know if you need me. And then when Calvin was diagnosed, that's when I really dug in. Because, you know, I manage Calvin's care. And so then Josh, Josh kind of got the aftermath of all of that. So I did and getting involved in Josh's care especially because you know, with his blood sugar's he was also kind of neat. Okay, when he wasn't taking care of themselves, so now he has a CGM.
Scott Benner 11:15
So his blood sugar's were high, and he was difficult to be around.
Charissa 11:20
Um, so they were mostly high. And that didn't seem to bother him as much. It's when he would get active and in a project, like a physical project, and he would go low, like he just said, some really mean targeted things that he doesn't realize.
Scott Benner 11:35
Gotcha. Oh, that's fun. Yeah. Oh, personal heartful like to everybody, not just you. Um,
Charissa 11:48
I think if he had, like, if he had, if he spoke to anybody else on a regular basis, it would probably be across the board. But ya know, it's Hmm.
Scott Benner 11:59
But lucky you you're there, huh? I know.
Charissa 12:03
And he doesn't even realize it too. He's such a bonehead. Sometimes
Scott Benner 12:06
I understand. So you basically learn things about Calvin's care, and then looked at your husband was like, he needs this help, too. Yeah. Okay. So you initially after saying, you're an adult, you can handle this. You learn more through your son and realize maybe he needs help that he doesn't know about? And then you jumped in? And did you kind of write both the chips? Or how are things going?
Charissa 12:28
So he's still primarily does his own care, he doesn't don't adjustments and his insulin, he doesn't track anything. So the only way I can really look at things is when I pull up his libre app and start sifting through it if I think he, like, if I think he needs something, and he's not doing it on his own.
Scott Benner 12:45
Okay. How often do you look at his stuff?
Charissa 12:49
Maybe once every couple of months, okay, so
Scott Benner 12:51
you're not totally you know, to involve to begin with, but you're also busy because having a two year old with diabetes is not easy.
Charissa 12:57
No, and it's been a monstrosity lately. Calvin was in the hospital about a week ago with a stomach bug. And so, like his body has completely changed in his management. So right now his body is absorbing glucose so slowly that I actually have to give the carbs a lead time before I dose and I'm dosing it in half unit increments, kind of like a pump instead of you know, if he eats so many carbs, I'll give him a unit. I can't do that. It'll crash it, so I have to stagger the half units.
Scott Benner 13:29
Yeah, how much is the way
Charissa 13:32
he was 30 pounds. He lost like we all lost a lot of fluids with this virus except for Josh. Josh actually came out of it. Okay. But when I had it, I had it right before he did, and I had been having some gastrointestinal issues, so I thought it anyway so I thought it was that and then Calvin got sick and I lost like eight pounds of fluids on that Virus.
Scott Benner 13:53
Virus COVID
Charissa 13:56
No, just a stomach bug. We actually had COVID twice already.
Scott Benner 13:59
Look at you. overachievers
Charissa 14:02
I hate it. Like we got vaccinated to like that's the not funny part. Like come on. Yeah.
Scott Benner 14:08
You don't you live in the middle of nowhere. How did you meet enough people to get what's going on?
Charissa 14:15
I go grocery shopping once a week.
Scott Benner 14:18
You can't? Yeah, you can't do that. You have to have the food AirDrop. If these people are not going to take it seriously and give you the COVID
Charissa 14:26
Oh, Misery doesn't misery is very, you know, everybody's gonna get it. Why worry about it? And so that's kind of
Scott Benner 14:34
Yeah, was it? Was it any different the first time well, so real quickly, just asking you. You were vaccinated when you got the first time? Yeah. And how was the experience of being sick?
Charissa 14:45
Um, so the first time I was mostly just tired, Josh lost his sense of smell. The second time it really kicked my butt because it kind of just flared up everything I already had going on. So I had muscle aches. I was tired like my joints hurt. or like it was just miserable.
Scott Benner 15:01
Gotcha. Did it last any longer or shorter the first or second time?
Charissa 15:06
I feel like it lasted a little longer than second time too. I had COVID fatigue for an extra couple of weeks after that.
Scott Benner 15:12
How about the kids that began it?
Charissa 15:15
Um, so the first time that kids didn't miss a beat the second time, Calvin's blood sugar's acted like he was sick, but he didn't show any physical symptoms. It was weird.
Scott Benner 15:24
That's interesting. Wow. How old are you? 36. Okay. I don't know why that makes it. Okay. Like if for some reason. If you're in your 20s I'd be like, oh, goodness, but then I was like, alright, she can handle this.
Charissa 15:36
Yeah, well, so here's the other thing. My husband's dad got COVID and he's unvaccinated had some health issues. We found out he had to open right before Thanksgiving. And he ended up dying a week later, Josh had to make an emergency trip out to Arizona. I'm sorry. And his blood sugar's during that period. Were really interesting. Your husband's
Scott Benner 15:56
where? Yeah, from adrenaline and anxiety. You think things like that?
Charissa 16:03
Mostly adrenaline Joash does not typically a debit physical symptoms of being stressed out, but you could see it in his blood sugar. Yeah,
Scott Benner 16:12
you can see it in my face.
Charissa 16:16
I'm still looking at your pictures you don't look particularly stressed right now. And
Scott Benner 16:20
that photo I was I was like six days into a week off. And I I hadn't been around. I hadn't been around diabetes for like, for a while. And I was somewhere where the weather was nice. And my son was having fun and it was a lot going on there that day, but when I'm upset you can you get to see it my face. Yeah, I'm not particularly good at hiding it. I don't believe
Charissa 16:42
Oh, no. Yeah.
Scott Benner 16:44
Okay. Wow, there's what made you want to come on the podcast?
Charissa 16:48
I actually wanted my husband to come on, because
Scott Benner 16:53
this is going great, then.
Charissa 16:56
Now it's fine. Um, I just I I get nervous. Clearly. My words I start shaking. Like I'm kind of a hot mess.
Scott Benner 17:06
We Oh, wait, hold on sooner. What do you mean? Clearly you think you've come off as nervous so far?
Charissa 17:11
Yeah. Well, I mean, I like shaking. You're shaking? Yeah, a little bit of coffee.
Scott Benner 17:20
Well, I mean, listen, from my perspective, you're not nervous. That's positive, positive. So you Why did you want him to come on?
Charissa 17:30
Because the story is just really interesting. And so his diagnosis, you know, he was diagnosed and then if mom was diagnosed as son has diagnosed like, it's a different perspective from me because I can still kind of stay disconnected. You know, he had to deal with all of this diabetes while dealing with his own. We're not dealing with his own diabetes, because he wasn't at the time. I mean, that's beside the point. But his onset to so Calvin's birth was actually a little traumatic. We were moving out of base housing out of Florida. And I got preeclampsia. The week we were moving. So we were supposed to move to Missouri on a Friday, I ended up in the hospital and um, on a Monday, Calvin was born by emergency C section on the Saturday, Josh wanted to come be with me and I told him, No, you need to close up this house because we are not staying in Florida. And so he and he had Phoebe with him. She was 18 months all the time. So he was trying to close up the house with a toddler while his wife is in the hospital. Not sure if she was going to be okay. And then his son was born. The hospital called him late. It was
Scott Benner 18:37
a mess. Yeah. That's nice. And so you thought that his perspective on that story was interesting because he got diabetes first, and then got to watch it happen around him to other times.
Today's episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes in pen is an insulin pen that offers some of the functionality that you've come to expect from an insulin pump. I know you're thinking, Oh, Scott, please tell me more. Well, I will. Yes, the pen is a pen. But it also has an application that lives on your smart device. This app shows you your current glucose levels, meal history, dose history and activity log glucose history, active insulin remaining a dosing calculator and reports that you and your physician can use while you're trying to decide what your next step is. Well, well, well, it's not just an insulin pen. Now is in Penn today.com. That's where you're going to find out more information and get started. If you're ready to try the M pen, just fill out the form at in pen today.com or do some more reading. There's actually some videos you could check out to about that. Listen calculator, the dose reminders, card counting support, and the digital logbook. So if you want to lighten your diabetes management load, but you're not ready for an insulin pump in Penn is probably right for you. In Penn today.com in Penn also offers 24 hour Technical Support hands on product training, and online educational resources. And here's something else that you'll find it in Penn today.com. It is actually very exciting. Now this offer is for people with commercial insurance in terms and conditions do apply, but you may pay as little as $35 for the pen. And that's because Medtronic diabetes does not want cost to be a roadblock to you getting the therapy you need within pen $35. How crazy is that? In pen today.com in pen requires a prescription and settings from your healthcare provider, you must use proper settings and follow the instructions as directed, where you can experience high or low glucose levels. For more safety information where to get started today, you can go to in pen today.com. How would you like to know what your blood sugar is, without poking a hole in your finger, you can with the Dexcom G six continuous glucose monitoring system, which is available@dexcom.com forward slash juicebox. Not only does Dexcom offers zero finger sticks, but you can get your glucose readings right on your smart device that's your iPhone or your Android don't have a phone. That's okay. You can use Dex comms receiver on any of these devices, you're able to set up customizable alerts and alarms, setting your optimal range so that you'll get notified when your glucose levels go too high or too low. And you can share this data with up to 10 followers. Imagine what that could look like your child could be at school, and their data could be available to you, your spouse, their aunt, the school nurse, anyone who you choose, my daughter has been wearing a Dexcom for ever. And it helps us in multiple ways. Around meals, we're able to see if our boluses are well timed, and well measured. If they aren't, we can tell by how her blood sugar reacts and then go back the next time and make an adjustment without the Dexcom CGM were sort of flying blind, but not just that meals. Also during activity and sleep. The Dexcom offers us an unprecedented level of comfort and security, being able to see my daughter's blood sugars in real time. And not just the number. But the speed and direction is an absolute game changer. If you're using insulin dexcom.com forward slash juice box head over there today to see if you're eligible for a free 10 day trial of the Dexcom G six, the Dexcom is at the center of how we've been able to keep our daughter's a one C between five two and six two. for over seven years, we've been able to minimize variability and keep her blood sugar's in a stable range because of the information that we can see with the Dexcom. These are our results and yours may vary. But using Dexcom feedback has helped my daughter without any food restrictions, live a more normal and healthy life dexcom.com forward slash juice box when you use my legs to reach the advertisers, you're supporting the podcast, I thank you very much for finding those links and clicking on them or typing them in, as I've said in the ads.
Charissa 23:43
Right. And he like in retrospect, he kind of thinks that that whole sequence of events may have been what triggered his diabetes because he didn't get sick or anything like that. Like there was no obvious catalyst except that time of stress.
Scott Benner 23:59
So the birth weight you're seeing around Calvin's birth and the the changing of the house was very stressful for your husband. Yes, obviously. And then he then he gets his diagnosis soon after that. Yep. Gotcha. Are there other autoimmune diseases in his family?
Charissa 24:18
Not so far. Um, he had mentioned. So when we first got together, you know, we had talked about diabetes because my grandpa had type two diabetes, and he had mentioned some of his other family members, like great aunts and uncles. Maybe it's just great uncles. I don't know somebody had something getting dated, but we never connected it because back then diabetes was just diabetes. We never connected it as type one. You're just like, okay, they had diabetes runs on both sides or families.
Scott Benner 24:44
Okay, and this was like some great uncle that might have had type one. Yeah, all right. But you don't see any other stuff celiac? How about people who are like crazy like, allergic to things or not yet. Do you guys talk enough that you would know?
Charissa 25:03
Um, so my family history kind of, I kind of find out things in pieces. And I think his is the same way. So, I was tested for celiac 10 years ago came back negative Calvin was tested at diagnosis and while he was in the hospital, because I guess they do that annually now that he's type one, which is great, that makes me really happy. So, you know, no, no positive. You know, they're just Josh's family history. You know, his dad had some health issues, but they were surrounding his, like blood clots. He had some blood clot issues. So nothing we know about autoimmune there. And then on his mom's side, on his mom's side, it's just the diabetes. Oh, you know what? There is something. So dementia runs on both sides of my family, my grandma on my mom's side, or on my dad's side had Alzheimer's. My grandma on my mom's side had Lewy Body disease, which is another form of dementia. So I know you posted something about the Alzheimer's. That's why I was really, really interested in that.
Scott Benner 26:14
Yeah, I think that those are that there's enough research around that that talks about inflammation that makes you just kind of wonder, get on me.
Charissa 26:23
Yeah. Yep. Yeah. And yeah, cuz I did some additional reading and the evidence, you know, connecting all of these auto immunities is pretty damning.
Scott Benner 26:33
Yeah, no, no. Let's see. I'm looking at something about his missus maybe involved in the body Lewy body dementia. Okay, so this is from the NIH T cells, which are key players in the body's immune system may be involved in the degeneration of neurons and Lewy Body. According to an IA supported study, researchers at Stanford, Northwestern identify how a certain type of T cells which is involved in autoimmune disease may travel to the brain to destroy neurons. So good times.
Charissa 27:13
Yeah, I'm gonna lose my frickin mind.
Scott Benner 27:16
Probably not, you know, or maybe whatever.
Charissa 27:20
I'm just rolling with it. It's like, you know what, I'm just gonna be bonkers. When I get old. It's cool. women in my family lives forever. So I'm just not going to know anything.
Scott Benner 27:30
Just be old and like, just like, listen, let me tell you a story. So we were away this weekend. And my mom is 79. She's just gotten her third round of chemotherapy. She's doing well, by all accounts. And she says to me, um, you know, take some pictures while you're out looking at colleges with Arden and send them to me. All right. So I sent her a number of pictures. She's 79. So it's not like she she doesn't hear the ding and go right to her text. Like usually I know if I text my mom, something I might hear back from about it in the day or so. And next day, she I get this phone call from her. She was hey, who's this guy in this photo with Arden. And I'm like, What is she talking about? I was like, What photo mom and she goes, she describes the picture to me and I opened up on my my text messages. That's me, mom. And she goes, that's you? And I said, Yeah, she was oh, I can't believe I didn't recognize you. I was like me either. And then I'm like, I'm texting my brothers. I'm like sending the picture to my brother's like, Mom doesn't know who the guy in this photo is. Like, I think we should start with getting her eyes checked. You know, let's let's hope for that, you know, but I don't know what's gonna be like, I'm sitting here right now telling you I can't I'm not certain why my mom doesn't recognize me in a photograph. I mean, sure. I photograph way handsomer than I am in person, right? I mean, I'm basically a model. But it shouldn't be that confusing. And, you know, I mean, can you imagine if you knew when you were 36 that that might happen one day, who would care? You don't? I mean? Like, like, Who would care? Like it's too far into the future? Screw it. Yeah, I wouldn't worry too much about it.
Charissa 29:16
No, I really don't. It's just It's something I've kind of accepted as a possibility. There's not a lot of worry there.
Scott Benner 29:25
Good, good. Perfect. Sorry, I'm answering a text. I don't mean to do that. But it's yeah, I'm trying to Well, I guess more like COVID related craziness. We've had a we had a leak in our shower. Oh, no. And, you know, so we contact a lifelong friend who's a builder. And I'm like, Hey, listen. I need my shower fixed. This is July. For context. We're speaking now in the middle of February. And he goes, Yeah, sure, beginning of the year, and I win You can't just fix my shower prior to six months, like like, from now on. He's like, No, I was like, he goes COVID No way, like COVID. I was like, hold on a second. I swear people just using this as an excuse now. Like, what's happening? Exactly. And he said, all of my jobs are behind because I can't get materials. Like, oh, no kidding. That's crazy. And I didn't think of that. You know what I mean? So hold on one second. So he just tried to call me.
Charissa 30:40
Oh, yeah, you don't want to miss that if you're
Scott Benner 30:42
telling my wife
I'm telling my wife, who will almost assuredly say you can just call him when it's I would do the same thing now. You'll be done like an hour. Just call him then. I'm now I've sent her all the information. What happens next? No one knows. But I like it. My wife's been like, since she was 20. Like, she's like, I'll do it and like, go ahead. And she's like
Charissa 31:31
so i There are definitely things I push to my husband just because I can now I had to deal with when I was single. So my tire blew on Friday, like blew on the freeway. I'm on the side of the road. I met, you know, call the tow truck. So the cars been up the shop since then. And this morning, you know, we needed to go bring the keys. And you know, Josh brought up I could do it and I could go get my coffee and or, or you can do it and you can bring the coffee. And he did and it's wonderful.
Scott Benner 32:06
Yeah, I don't have that. I gotta be honest. I at one point this morning, you know, I so we get home last night. Like we drove Thursday 15 hours, like straight shot. Then, you know, ate something we shouldn't have eaten too late at night, went to bed got up in the morning. Did a whole day of like sightseeing. I'm not sure what happened to my voice just then sightseeing going around this college campus trying to figure things out that we got there a day prior to when the tour was so we could you know, kind of get the lay of the land and figure things out. Next day, full tour all day. Massive day my knee sore at the end of the day. Very unpleasant. And oh boy, hold on a second. And then I'm sorry, I'm laughing because my wife just texted me back. Just call him when you're done. It'll be fine. I can't schedule anything. I can't see your calendar. My iPad is like right next to where she is right now. She could pick it up and look at my calendar. But she means it's not on her phone. So anyway, this seems like she doesn't want to be involved in this
Charissa 33:19
as unfair as it is I'm totally on her side though.
Scott Benner 33:22
I would do man she grew up across the street from she's known him her entire life
Charissa 33:29
I just don't do I listen.
Scott Benner 33:31
I see how it is so anyway, all day Saturday do this tour you know eat some dinner go to bed get up drive 15 hours home you know get home last night you know crawl into bed all of us like we all just like it's just me Arden and Kelly we gotten up our bed like we're sitting there like let's just put one TV show on before we go to bed. They pick a TV show I freakin hate. Then I get up this morning. I've got to go get the dogs from the kennel before I talk to you. So I'm rushing around like a lunatic. The lady at the kennel is trying to be like cordial. And I'm like, Honey, I gotta go. running out the door to come speak with you. And then in the middle of it. The guy had been waiting for a phone call from for eight months calls. And I'm like, Hey, can you just text him? She's like, No, I can't do it. And I just want that story to sit here for all the time in memoriam so that any men who might hear it in the future will know what to expect. I drove the entire trip both directions and other people in the car like we could drive we could drive just ask I was like, You don't mean that. So?
Charissa 34:41
Well, I mean. So in my husband case, in my husband's case, he actually won't let me drive because he's terrified of my driveway. He hates it. He would rather just drive to exhaustion because he doesn't want to deal with my stuff. Why is your driving
Scott Benner 34:55
so bad? It's not he's just dramatic. Is his blood sugar was high? Hey, looking back, do you see any things about your husband's diabetes that may have existed longer? Or before you knew he had Lada?
Charissa 35:14
No, because he did mentioned that he was thirsty all the time. But he didn't tell me about it. Kind of did this thing,
Scott Benner 35:20
how long it was, how long did he in hindsight, tell you? He had been thirsty for like years of thirst or months? Or
Charissa 35:29
maybe a month or two? Oh, God, not anything significant.
Scott Benner 35:32
I gotcha. So what do you find interesting about his story? I mean, he's not here. By the way, how did this happen? As you say, you should be on the podcast. He's like, I'm not doing that you do it.
Charissa 35:41
So when I brought it, like when I brought it up on the Facebook page, cuz you had posted looking for people, and I was like, Oh, my husband should do it. That's the weekend. That's the week his dad died, so I never brought it up.
Scott Benner 35:54
Oh, why should you put the cart before the horse?
Charissa 35:57
Yeah. Yeah. Cuz I wanted to talk to him about doing it.
Scott Benner 36:02
And then it just never happened that way.
Charissa 36:06
No. And I did, like mentioned much, much later, as, you know, when I told him, but I was gonna do it. I was like, Yeah, I really wanted you to do it. But you know, that's the week you're dead dead. So I didn't feel comfortable bringing it up. And then you posted looking for somebody who had, you know, another autoimmune disease? And I was like, Well, I don't, but I've been tested for everything.
Scott Benner 36:26
Why have you been tested for everything? Because I
Charissa 36:29
have unexplained joint pain and fatigue, and a host of symptoms that I can't even remember in any given date and time unless I'm experiencing it. It's frustrating. Have
Scott Benner 36:40
you had them your whole life? Or are they something that's new?
Charissa 36:42
There, so they kind of, they have different onset times. Like the joint pain started in 2018, after Phoebe was born after. So in 2018, I had an MRI, and they showed a minor back injury. And then I got sent back to work, we can sell the equipment mechanics, and they the doctors on the Air Force Base told me Oh, it'll fix itself. It did not it got worse. So I had to have surgery eventually. But the joint pain started post that. And so I ended up being tested like so even while I was pregnant with Calvin they tested for actually, I have a spreadsheet for this. My memory is not great. So I have a spreadsheet for every No,
Scott Benner 37:30
no, this is crazy of a spreadsheet for your pain. I love it, get it out.
Charissa 37:34
I have a spreadsheet sheet for symptoms, I have a spreadsheet for every bit of bloodwork that I have record of I want
Scott Benner 37:42
to hear about a lot of this. So tell me when it's in front of you. Okay, so I've got it pulled up. Let's see jumping to 2018. You're, like 3233 years old, you would have done this prior to that.
Charissa 38:00
I'm sorry to say that one more time. I
Scott Benner 38:01
said, this was about three or so years ago, but you didn't have any of this pain prior to that. So prior to your early 30s.
Charissa 38:08
Nope. Um, prior to my early 30s, I had gastrointestinal issues. And so that's also been kind of a thing. But I just figured well, so I just figured I had food intolerances like out gluten free for a lot of years. But before I got pregnant, I started eating gluten. Again, just in like small amounts, because I didn't want I don't know if this is logical. But this was my theory at the time. I didn't want my kids to have a reaction to gluten because they hadn't been exposed to it.
Scott Benner 38:39
So you tried to expose them in utero? Yes. Did it make you be pants again? Did you like to bother your belly?
Charissa 38:47
So it really didn't. So I had read that pregnancy is more synonymous with constipation. So I figured they would kind of balance each other out.
Scott Benner 38:59
Crossing your mind kind of mad scientist keep going.
Charissa 39:03
Like for once in my life, my system just kind of worked. I was like, alright,
Scott Benner 39:09
so you're better pregnant things work better when you're pregnant.
Charissa 39:12
Only in that respect, other than that pregnancy was miserable. I hated it. But the kids are cool. So it's alright.
Scott Benner 39:18
Okay. So okay, so you did that. And then after having your daughter, you started experiencing joint pain? Yes. Where what joints? All all of them down to wrists, fingers. ankles. Okay.
Charissa 39:36
Yes. Although in retrospect the knee and ankle pain could actually have been related to the back injury as opposed to actual joint.
Scott Benner 39:47
So the back maybe had your gait off and maybe messed with your other joints? All right.
Charissa 39:53
Yeah. Because I mean from so from, from kind of the waist down well, not the way from The lower back down, you know, I have I have nerve pain issues. And so those will manifest in my knees and my ankles.
Scott Benner 40:09
Hurting. Yes. And for how long and how frequently
Charissa 40:16
so right now it's not as bad. So I have a spinal cord stimulator implant. But before I had the back surgery, it was it was whenever I'd be up and moving. Just the pressure would, you know cause the cause the nerve endings to bottom out and cause pain in those areas?
Scott Benner 40:38
What was the back injury?
Charissa 40:41
It is a two because I mean,
Scott Benner 40:48
I mean, how did you do it? Do you lift something something fallen you like? Oh,
Charissa 40:53
that was actually one of the more frustrating things is it wasn't one event and I had to fight with the VA VA to get disability for it. Because it wasn't one traumatic event that caused the disc bulge and the pull up my health profile here. Give you the technical stuff. It was just repeated. We're in player because I was a heavy Oh, so actually, you don't let me give you some context for this. Before I had kids, I was five foot 220 pounds, working heavy equipment mechanics. So after I had Phoebe, I struggled to lose the weight. And I'm a fluffy girl now. Which is fine. It's not so bad. As long as I can stop gaining the stinking weight. But really? Okay, um I lost my train. Where did I go?
Scott Benner 41:58
Well, I can help you. You're lucky. I've been listening. Even if you have not been. You were trying to give context. You said I was five to 120 before I had the baby after the baby weight was a little difficult to get rid of fluffy now. Not about there's something for you. I think you were looking for body context for me. But you were doing a tough job. Heavy Machine something.
Charissa 42:22
That's what it was. Yeah. So I worked on. So I did diesel mechanics. I worked on hydraulic test stands on combine generator air conditioning units, like big, big equipment. So it was a big job for a little person. And so the wear and tear. If had my back injury had been treated when it was minor. I probably would have been fine. Okay. However it was the doctors just told me it'll fix itself go back to work. And it escalated and
Scott Benner 42:55
got worse and worse and worse mean what did you lose function of?
Charissa 43:00
So I was in pain all the time. I was angry. I you know, I had back pain. hip pain, knee pain, ankle pain, like just constant.
Scott Benner 43:11
Yeah. Do your wrists hurt?
Charissa 43:15
They do. Yeah, shoulders. Yeah, the right one more than the left. Okay, so sciatica right side other spondylosis with raid a que lo pathI lumbar region lumbar degenerative disc disease lumbar facet at I just wrecked my back.
Scott Benner 43:31
Yeah. Just kind of doing stuff. Yeah. You just you kind of weren't ready for I guess and or your body wasn't ever going to be okay with. It sounds like yeah, then it got worse and worse. Did it debilitate you? Is that how you finally got out of it?
Charissa 43:45
Yeah, so I was 30. I was 35. When I got back surgery. I was a 35 year old walking with a cane.
Scott Benner 43:53
That's fine. How old were you when you had Phoebe?
Charissa 43:57
33.
Scott Benner 44:01
Okay. And then you had back surgery and then you had a Calvin.
Charissa 44:05
I had Calvin and then I had back surgery. The reason that we decided to have Calvin when we did is because I was already in pain. Like I already had chronic back pain and chronic joint pain. And I thought if we waited, I wasn't gonna be able to have another kid. And I really like I had my brother and sister growing up. And we're super close. And so I really wanted Phoebe to
Scott Benner 44:28
have that. Yeah, I say do how do you manage the pain now?
Charissa 44:33
spinal cord stimulator. It's awesome.
Scott Benner 44:36
Okay, is it internal or external? Its internal.
Charissa 44:39
So I have two leads that are implanted along the spinal cord and there's a battery pack that's underneath my skin. That feels really funny. And then I have a remote, a cool little remote that lets me adjust the the vibration.
Scott Benner 44:54
It's constant. And what does it do confuse the nerves or
Charissa 44:59
Oh But maybe actually, it just like it. You know how a 10s unit works where it just kind of works things out for you. Yeah,
Scott Benner 45:09
it's that but internal. So the so is there no pain now with the stimulator?
Charissa 45:16
Very little to none. Yeah.
Scott Benner 45:18
No killing. Do you ever have to get up a little bit like does it ever need more? It does? Yeah.
Charissa 45:23
When I'm working, like if I'm doing anything physical, I definitely do. We're gonna build a fence today for my garden. And so I'll probably have to jack it up after that. Gotcha.
Scott Benner 45:33
They need an app for the phone. You don't want to mess with a remote. I'd like to see it right on your phone. That would be nice. And so did that alleviate joint pain, knee pain, hip pain, like what did it fix?
Charissa 45:45
So it helps. So the knees and the ankles may have additional issue wearing tear issues, but I haven't followed up on it. But as far as like the nerve pain, it's cut out the nerve pain. So now you know, I've got like, kind of the grating, you know, just worn out pains. But I still have you know, Shoulder Elbow, wrist hands, my hands are getting kind of obnoxious because they like to swell up when storms are running through.
Scott Benner 46:19
But you don't have RA or anything like that.
Charissa 46:22
My blood work is absolutely stinking perfect. And it's maddening.
Scott Benner 46:28
It sucks. It really does. Really? Does the nerve pain feel like? Let me see some other questions. Have you ever felt like your bones hurt? Yes. If you've had that feeling of like, My bones are bruised or aching.
Charissa 46:43
They ache but there's no physical damage that is, you know, visible from the outside. And if I fuss with my joints, like there's no point where I can touch them that will cause it to hurt. It just hurts.
Scott Benner 46:56
It just hurts. Does this have any? Excuse me just have any relation to your period your cycle at all? No. Okay. pretty regular. I'm sorry. I know. It's like 40 minutes. And I'm like you've pretty regular periods.
Charissa 47:11
I think so I don't really track it anymore. I never really tracked it actually.
Scott Benner 47:16
Not super heavy, though. Or, like less than awkward amount of time, nothing like that.
Charissa 47:22
I mean, they're more frequent than I'd like. Like I get maybe three, three and a half weeks.
Scott Benner 47:27
But okay. Okay. I'm just asking all the questions. Fine. This is why in the old west, you would just eventually, like leave your woman behind. Like showing her out. We'll get another one. Oh my god, it's terrible. A couple of
Charissa 47:44
weeks ago, I told my husband like, I want to blame you if you left me like you did not sign up for this. And he's like, Well, you didn't sign up for my either.
Scott Benner 47:52
What do you say? Like, like abandoned at the Walmart kind of thing. Like just like
Charissa 48:00
at home, I was feeling just terrible. We had a snowstorm come through and those like storms change of season and then when it gets really hot and humid in the summer, those for some reason, like those scenarios just wreck me. And I like I'm just like a puddle. Like just a puddle full of pain.
Scott Benner 48:23
Would you be better? Would you better than like Phoenix Do you think?
Charissa 48:29
Um, maybe. I mean, we're better in misery than we were in Florida. Florida was miserable, humid. Yeah. But you know, the fall times here are pretty dry. And that's one of my worst. One of the catalysts for starting to follow up on it again is a couple of years ago and get ready get the bloodwork done, which all came back normal except for inflammation. Like there was one fall day I woke up and my hands felt like they were being crushed. And that scared me. But check for rheumatoid check for lupus checked for
Scott Benner 49:11
fibromyalgia like fibromyalgia, Lymes disease heavy metals, they do all that
Charissa 49:19
they didn't check for heavy metals. But you know, everything else
Scott Benner 49:24
came back. Hmm, came it all came back clear. Yep. Krista, do you ever self medicate? i
Charissa 49:33
So oh, you know, there is one little thing. There is one little thing. So when I went to the neurologist, they actually gave me a brain scan for Ms. And that came back clear. But they did a vitamin panel, my D, my D vitamin D was low, or actually that was actually a decision. Yes, so that was deficient. And then my B 12. was on the low end so I started a multivitamin that has between Oh, and D. And then I recently started one that added iodine into the mix because I don't eat iodized salt. And I know that can do some, I do listen to your podcasts.
Scott Benner 50:14
Does that happen that that happened to impact anything? Not so far. I keep wondering how many people are we're gonna have to test their vitamin D, and it comes back a little before we start acting like, well, that must be the normal level of people's vitamin D at this point. I mean, like, not that it's not impactful, and that you don't need it. But I mean, it's happening to so many people that it's just, you know, it's crazy. Yeah, so, so question is impacted my question. Do you ever find yourself so badly off that you have to self medicate? Like, how do you manage pain before the stimulator? It's just a weird thing to ask. Because I'm basically asking, it's great not to have anything back. Yeah, like you smoking weed or drinking or like, doing something harder? No, I.
Charissa 51:06
So weed is not my thing. You know, no, no judgment on the people who do it. It's just not my thing. But before I had kids, I like I realized, like, when I was pregnant, and after I had kids, because I wasn't drinking. I realized how much I self medicated with alcohol for a really long time. Yeah, well, I mean, probably for everything. But yeah, that was part of
Scott Benner 51:32
it. What's the other stuff?
Charissa 51:33
What's the other stuff? Oh, just life stuff. You know, life gets hard. I drink a little.
Scott Benner 51:38
You know, it's not my thing. And so I'm fascinated by it. Like, no, yeah, I don't know how to, like, I don't know how to like, I can't commiserate with that. For some reason. Like, when life gets hard, like, I don't know what happens to me. I don't think to do that. But it's, like, not a judgement. I just, I mean, I'm sure if I thought to do it, I would do it.
Charissa 52:01
I mean, it's not a bad thing. Since you know, I've, since I've had kids, and especially now with Calvin's diabetes, I drink even less, because I can't bear the thought of not being in control of a situation if something were to arise. So I've had to come up with other coping mechanisms. So gardening is a big one. You know, bike riding is something I actually started before I had kids so that I've gotten back into
Scott Benner 52:24
you're able to do that. You're able to do that now.
Charissa 52:28
Yes. So that was one of the really cool things about the spinal cord stimulator is that I got to get my bike for free. I'm actually doing a happy dance.
Scott Benner 52:36
How did you find out about the stimulator visit VA or a private doctor?
Charissa 52:41
Private Doctor, I have not done much with the VA Health Care System yet, because I get tired of fighting on the civilian side. I don't want to fight the VA for the rest of my life. Okay, I
Scott Benner 52:53
don't like yeah, okay.
Charissa 52:55
But so my. So first I went to when they found the injury, they sent me to neurosurgery. And they talked about spinal fusion, which is probably what I've should have gotten instead of the spinal cord stimulator. The spinal cord stimulator was an option, because I have two small children. And I cannot commit the time for recovery. For the spinal fusion. Like if I have the spinal fusion, I would be at higher risk for subsequent surgeries. Because, you know, I have two small kids to take care of like, I cannot
Scott Benner 53:30
lift such a scary thing. To me. The idea of having back surgery is if I find it frightening,
Charissa 53:36
I was terrified. I dang near canceled the day before because I was so scared because I read a stinking article about what could go wrong with this thing.
Scott Benner 53:44
Yeah. So you had a bulging disc, and they were in that they think that's where your pain comes from?
Charissa 53:51
Yeah.
Scott Benner 53:54
It's terrible. Like I just it's the worst kind of pain, like because it comes and goes and it feels like it's soft muscle, but it acts like it's structural. Back pain is terrible. It really, really
Charissa 54:05
is. And, like I had gotten to the point where mine just didn't go away.
Scott Benner 54:09
Right? How would you characterize your stress and anxiety level? Why you laugh?
Charissa 54:21
Because if there's a chart, I would be like, over left field.
Scott Benner 54:25
There's a lot of good,
Charissa 54:28
oh, it's just life stuff. But I you know, I deal with it all right. You know, it's just, you kind of take things one step at a time. So there's something that my basic training instructor said, that really sticks with me. And that's, you know, it doesn't get better, you get better. And so that's kind of the mentality that I just roll forward with, you know, every every forward motion counts. And it's okay to backpedal like Take it, take two steps back and just push forward again.
Scott Benner 55:03
That's cool. That's really insightful. Actually. I want to talk to you a little bit about Calvin's diabetes and what you were faced with in the beginning and what you've learned so far and what's working and what's not working. So,
Charissa 55:18
yeah, usually gets really annoyed about how much I talk about Ellen's diabetes.
Scott Benner 55:22
Oh, guess what, this me your time. So, you're gonna you're gonna get this song about it as much as you want. diagnosed, he sends him home he a little kid, they give you a pen.
Charissa 55:35
They did. We had. So they sent us home with the JR, quick pins. And I had, but I so when we first got our prescriptions, TRICARE had us go through Express Scripts, pharmacies. And those stinkers had cancelled the medication, because they said they couldn't get in touch with the endos office. Our endos offense is wonderful. So even early on, I knew that was a load of, you know, right. Um, so we like I was in a stinking panic because Calvin ran out of insulin. And I was like, ready to go down to Walmart with a credit card and just pay for it and the Walmart next to us you know, they we got an emergency authorization through so we could pick it up from Walmart. But Walmart gave us the pens I only had the whole units. So for a month there until we got the junior quick seconds back. I had to modify a 16 month old diet for whole unit dosages. I was so bad.
Scott Benner 56:42
Yeah, no kidding. His half unit syringes and pens are a lifesaver when you have a little really are was was Calvin still. bottles at 16 months.
Charissa 56:53
He had. You know what? He was off bottles at that point. He was still eating a lot of rice cereal and a lot of pure rates starting solid.
Scott Benner 57:02
Okay. So what's the I mean, he's on a slow acting right away.
Charissa 57:08
Yes. Okay. Yep. Yep, he was on land. And
Scott Benner 57:11
a lot of for Calvin. He's not messing around. He's jumping. Right.
Charissa 57:14
I've actually looked into that a little bit, because I remember you saying that Arden's potential honeymoon period was like three days. And, you know, I read, you know, I'm on the I'm on Facebook quite a bit. So I read about other people's honeymoons and Calvin's, whether it's his pancreas taken in, I wasn't sure if a lot of played a factor. But another thought has entered my mind of gastrointestinal issues, which is why I'm glad he gets tested for celiac annually. Because it could be an absorption of glucose that makes this happen or a lack of absorption. But he pretty regularly, like we have to adjust his Lantis like his, his, a lot of times his Bolus stays fine. So I'm inclined to think his pancreas is doing something. But his baseline needs to be adjusted pretty frequently,
Scott Benner 58:06
how drastically from what Allah.
Charissa 58:10
So typically a unit and one of the challenges a lot of a lot of times we get stuck between half units, so we kind of just waffle until he's solid on one or the other, you know whether we want to fight the highs of the lows. But, so, in this last fall, we actually had to back off his Lantis two units. Because I had moved him up because his body was running high. He had needed it. And then, you know, a couple of weeks or a month later, all of a sudden he's just crashing. And it took me a minute to realize what was happening because we've never backed off Atlantis before our kind of understanding was that once you're on, you know this dosage, you just kind of go up from there to see growth, we didn't realize we would have to backpedal. So he would get into a blood sugar of like 131 20 like a really nice spot for him, you know, a little buffer on each side. And he would just start crashing. So his Lantus, you know, he get into that good range, and if Lantis would just yank him. Gotcha. And so we backed off a unit and it was still doing it, but a little bit less, you know, it was on a diagonal instead of a crash. Right, right. Back off again. That's, that's kind of how we figured that out. Yeah. And
Scott Benner 59:28
how much does he weigh now versus how much do you weigh when he was diagnosed?
Charissa 59:32
He is about 30 pounds now. Yeah. When he was diagnosed, he was still a little guy. I honestly can't remember his weight. I don't want to say about half that.
Scott Benner 59:42
Okay. Wow. Okay, so he's gained a significant amount of weight since he's been diagnosed. Good. So are things easier now that he's gained weight?
Charissa 59:54
They were until he got the stomach virus. Yeah. Right.
Scott Benner 59:57
And then that's changed everything. assuming
Charissa 1:00:00
I'm working with a totally different body, yeah,
Scott Benner 1:00:03
how would how was it going? Like, like what? You said your husband uses. Libre does your son use CGM?
Charissa 1:00:12
Yes, the dex calm. So when we first got the dex calm, it was really frustrating. Because it seems like his he just, he had a lot of false readings like there was one day that was particularly scary. And my mom, like, so from the beginning, I've really just kind of honed in on different trends and things. There was one day we were playing outside. And at the time of day, typically he would his blood sugar would start to come down. But his Dex calm, showed that he was going up. And I was like, that's weird. I'm just gonna double check. And he was actually low. Like legitimately low, like, you know, 50s or 60s. And that scares the hell out of me. But you know, since he's turned two and gotten older and gotten a little more meat on him, it's actually been a lot more accurate. And it's saved our lives a couple of times, and especially with the stomach virus, like thankfully, we have a really, really good sensor this last week, so I could actually figure things out.
Scott Benner 1:01:12
Yeah. Well, I mean, I assume that after the virus is completely cleared, you'll see some return to normalcy, that would be my expectation.
Charissa 1:01:20
That's mine, too. But you know, for for right now, we're just rolling with what it is and trying to keep him in range as best we can with with the tools that
Scott Benner 1:01:28
we have. What was his day once he when he was diagnosed?
Charissa 1:01:32
I have no idea. It wasn't pretty. I can tell you that. It wasn't significantly high, either.
Scott Benner 1:01:38
Okay, how about his blood sugar when you got into the hospital? Do you remember?
Charissa 1:01:42
Uh, not really. But I know, again, it wasn't like, it wasn't like outrageously high, but it was definitely high diabetes, because, you know, the nurses checked his blood sugar. And I like, Cust like, just oh my god. And that's when I told the nurses, you know, his dad has type one. You know that. That's what I knew.
Scott Benner 1:02:02
What, um, where's my question? What is a once he's been so far in this first year?
Charissa 1:02:11
So we haven't been great, but we're getting better. In the hospital last week is a Wednesday it was 6.8.
Scott Benner 1:02:18
That's good. That's really good. So you're, you're bringing it down. So you're figuring it out? So you're basically trying to keep him safe. Let him eat. Let him grow and slowly move in the direction you're looking for? Yes, it makes a lot of sense to me. Especially with a little kid like that. And you have another young child too. Yep. Yeah. Yeah. There's a lot going on, is what I'm saying. Yeah. Are you okay?
Charissa 1:02:43
For the most part, I have my days, like, the other day, I was just like, Oh, my God, hell with this league? Like this is the worst, but
Scott Benner 1:02:53
oh, my gosh, are you working at this point, or no.
Charissa 1:02:56
I'm actually in grad school, library and information science, but it's an online program. So I can work my schedule, aside from deadlines around everything that goes on
Scott Benner 1:03:06
around here. Gotcha. And you're done with the guard.
Charissa 1:03:10
I am in inactive status, for the medical out processing. So I get to keep my health benefits as long as I'm still in there. But you know, I'm not expected to go to Vermont and do drills or anything like that right now.
Scott Benner 1:03:26
Right. And your husband is I'm sorry, is he in the service too, or is he works in the private sector.
Charissa 1:03:32
He's out now he got out before Phoebe was born. And so he was a stay at home with CB for the first year while I was finishing up my active duty assignment.
Scott Benner 1:03:40
Okay, I see. Interesting. All right. Yeah. Is there anything that we haven't talked about that you want to talk about?
Charissa 1:03:48
I mean, I always like talking about gardening. I love my garden. But it can own it loosely relates to diabetes. And it's the only way I can get my kids to eat a steak and vegetable.
Scott Benner 1:03:58
So they'll eat something that they've grown.
Charissa 1:04:01
No, they'll eat something if I'm eating it. Like they'll try something if it's something I'm actively eating, but if I put it on their plate, they won't have anything to do with it.
Scott Benner 1:04:09
So interesting. But they'll eat what you eat. Yeah, that's thoughtful. Yeah, what do you alright, I'll bite What are you growing Chris? So what's what's helping you with your stress out there in the yard?
Charissa 1:04:21
So last year, so I love peppers. Peppers are just everything and the hot peppers actually do help with my inflammation a little bit. I think it has to do with the release of endorphins. So peppers, tomatoes, eggplants. I did okra for the first time. Last year and fresh okra is phenomenal. I can't like I've tried to do greens and I'm gonna try brussel sprouts again. They're a labor of love. They, they're interesting.
Scott Benner 1:04:48
They're difficult to grow.
Charissa 1:04:51
They kind of they just have a really like the seed packet says, you know one thing and then experience tells you something totally different. So I plant them in the spring. Just let them chill out for the summer and then hopefully I'll get a harvest in the fall. That was my experience last year and I am kind of planning for that the same so I started them earlier and I'm gonna put them out earlier. I'm terrible at root veggies. Carrots are supposed to be easy to grow HECM can't do it
Scott Benner 1:05:17
yet. Do a carrot. Not yet, Missouri. They're like, there's like wind come with me down the lane there. Do you get tornadoes? Or am I thinking of the wrong part of the country?
Charissa 1:05:26
Oh, no, you're the right part of the country. Gotcha. That's,
Scott Benner 1:05:30
that's part of the fun too.
Charissa 1:05:32
Um, you know, and it's funny because where we live, it's supposed to be like tornadoes are historically a little bit more active here. But so far knock on wood. Like Bruneau level knock on wood on everything. If you haven't watched in Canada, that won't make much sense. But you know, it's a we've been fortunate so far last year, we really didn't have much of a storm system even though like we're Kentucky got hammered. This this fall to like spring is the typical tornado season, but we actually get a lot of storm activity around the holidays like Christmas that years.
Scott Benner 1:06:14
I'm gonna say here just because it fits. Foods that that they say fight inflammation or tomatoes, olive oil, leafy greens like spinach, kale, collards, fatty fish like salmon, mackerel, tuna, sardines, nuts like almonds, walnuts, and others. fruits like strawberries, blueberries, oranges and cherries, and foods that they say this is from Harvard. are inflammatory, lard, processed meats, refined carbohydrates, sodas, fried foods. So I don't know have you had any luck impacting your, your information that way?
Charissa 1:06:54
Um, so the peppers, the hot peppers, I found out help. Tomatoes my stomach, not good does not always agree with. Okay, I really have to be mindful of tomatoes. I don't drink soda. I just don't. In my 20s I drank a lot of Dr. Pepper. And I just I felt really sluggish. And I realized that one day once I stopped like once I went through a short stint where I wasn't drinking because I couldn't afford it. I realized I felt better. So I stopped drinking soda. High fructose corn syrup does not exist in this house.
Scott Benner 1:07:27
Good. That's excellent. I was not was but have been always interested. As you travel south on the East Coast. There's a line when you get underneath of it. You can't even find a diet soda anywhere. Not that you like I'm not saying diet soda is better than soda. I'm saying. I'm saying listen, if you want my opinion, don't drink soda. But the it's just interesting how if you're in a store, and you can't find a diet version of a drink? To me that's cultural. Right? Yeah, like these, like, what the store is saying is, look, if I put diet something in here, nobody gonna buy it. So I can't I can't take up any space in my cooler for this, even that I find kind of fascinating around soda sodas. I hear people talk about soda. Like it's like it's a staple in their life a lot. That fascinates me really, that there's not just something that somebody might have once in a while. But it's something that's drank, like consistently throughout every day. I don't know why our brains work that way. We do it with carb counting to see if I can make sense for a second. You put a waffle on a plate, and you're like, how many carbs is this and it has three tablespoons of syrup on it, which is probably like for anybody who's having a waffle. And it's hard to recognize that the syrup probably has more carbs in it than the waffle does. But yeah, but it's smaller, or it doesn't seem as substantial. So I don't think your brain works that way. You know, like, it's just as interesting that people don't tend to count the carbs for condiments, which could very easily like add up quickly if you're having honey mustard or ketchup are things like that. And it's, it's not thought of the same way. And for some reason I think liquids are that too. Yeah, you know, like, oh, how do you eat? I eat great. But, you know, nobody's for some reasons thinking about what's in the soda or what's in the liquid that you're drinking.
Charissa 1:09:29
Yeah, or in that point, like, you know, if you have a salad, there are people out there that will literally soak their salad with salad dressing. And depending on the salad dressing, it's a terrible idea.
Scott Benner 1:09:42
My wife got a salad in a restaurant once and they started bolusing or her and Kelly we're gonna Hernan we're gonna split it as a we should really look this up. I looked it up the salad had like 90 carbs in it. I was like how can a salad of 90 carbs? What does that even mean? But like, like, you're not actually having a salad, You've tricked yourself into believing you're eating something healthy at that point. Anyway, I'm gonna listen, I'm not saying I don't roll into a restaurant once in a while and just completely throw caution to the wind and just like, I'm gonna have this and this and this. But if in your mind, you know, I don't know, it's a cheeseburger and your bolusing for just the bun, and you're not bolusing for the topping, or the fat that's going to slow down digestion and create a, you know, and you don't realize that your body's going to, you know, take protein, something that has no carbs in it, and break it down and store it as glucose like, these are things that, you know, impact your blood sugars that make other people go like, Oh, I it's just diabetes. It's crazy. I don't know what happened. I only ate a cheeseburger. Anyway,
Charissa 1:10:49
yeah. I actually have a story about the learning to when when we knew propane was needed. And it's, it's one of those things that so it's what I call the peanut butter sandwich. Say the
Scott Benner 1:11:06
way say that again, the peanut butter what?
Charissa 1:11:08
So it the the catalyst was a peanut butter sandwich. So typically, so I feed the kids breakfast and lunch with typically very little variation. As long as I know that they'll eat the first two meals of the day consistently, I can experiment with dinner, you know, they'll complain and refuse to eat, and it's okay. Because, you know, they've, they they get enough. Yeah. Yeah. So, typically, I would feed them chicken nuggets. But one day Calvin was coming down, and I was like, you know, it'll be quicker if I do a peanut butter sandwich. So I made some peanut butter sandwiches. And I was talking on the phone with a friend from Vermont, and his little alarm goes off. And I'm like, well, that's weird. You know, never go slow at this time. So I gave him a low snack. No big deal. I keep chatting on the phone. And he's going lower. Just like what I thought Dexcom was off. Its rocker. So I think your poked him and Dexcom was spot on. And so I was like, with my friend, I was like, I gotta go. I gotta, you know. So the next day, well, I thought about it. And I had seen, you know, other moms talking about, you know, foods, like chicken nuggets have a lot of fat. But I looked, flew and I was like, oh, yeah, that's the case. So the next day, I did chicken nuggets. And the expected response happened, no low. So the next day, I tried to peanut butter sandwich again, this time I was prepared. And he hit that low. And so that's when I realized I needed to dose for the protein, like I needed to create the discrepancy between the chicken nuggets and the peanut butter sandwich, that would give me the same outcome. And that's where I started dosing for protein. Well, good
Scott Benner 1:12:56
for you. Oh, wait to pay attention. Very nice. Are you generally I have to go I feel to get my teeth cleaned, actually. But it's a weird thing to say. But I gotta get my teeth clean. Are you generally happy with the direction that Calvin's diabetes is headed in and your understanding of it?
Charissa 1:13:13
Yeah, he's improving. And that's really positive. We have a pump training scheduled for March 7. That would be pretty huge.
Scott Benner 1:13:21
That's great. What kind of hump you getting?
Charissa 1:13:23
We did the T slim. And that actually. So there's an interesting point about that too, because with us having to potentially change insurances in the near future. My husband's insurance is terrible. It has a $6,000 deductible per person per year. I know we're going to meet that and we can't afford it. Yeah, so the T slim the entrance now covered 90% of the T slim. And I asked the rep out of pocket if we had to pay for supplies. What would that be monthly? $150 a month. I was like, Okay, that would suck. But I think I can manage that. So that's why we went with the diesel.
Scott Benner 1:13:55
I would take whatever. I mean, if I was in a financial situation, I would take whichever one was affordable. That just makes sense. So
Charissa 1:14:03
yeah, you have to kind of think ahead about that transition to
Scott Benner 1:14:06
well, he used the control IQ Do you think
Charissa 1:14:09
eventually, um, I, I'm glad we're starting off at the base like you because that'll give me a feel for it. And then, you know, once I can kind of understand how that works, then I'm more I think more able to understand how the algorithm is going to act.
Scott Benner 1:14:25
Okay. Did they did they tell you you were starting with baseline here? Did you ask to start with it?
Charissa 1:14:30
They told us we were starting Basal IQ. Yeah, that's good. All
Scott Benner 1:14:33
right. Got it. Okay. Well, Chris, I had a really nice time talking to you. I think I will look back on this episode and say to myself, I have no idea what we talked about. And yet I enjoyed myself. And I think those are the best ones. So thank you. I really appreciate you putting in the time and and doing this with me. Yeah, thanks for having me on the show. Yeah, it was wonderful.
I'd like to thank Karissa for coming on the show and sharing this story with us. I also want to thank Ian pen from Medtronic, diabetes, and Dexcom, makers of the Dexcom G six. You can learn more about the N pen and get started today at in pen today.com. You can also get started with the Dexcom g six@dexcom.com. Forward slash juice box, you may be eligible for a free 10 day trial, head over and find out. While I'm thanking people, let me thank you for listening, supporting, subscribing, and sharing the Juicebox Podcast.
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#752 If It Pleases the Court
Anonymous Female guest has type 1 diabetes and good story.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
You're listening to Episode 752 of the Juicebox Podcast
Guest is with me today she is an adult living with type one diabetes. And we're going to cover a multitude of things, including her road from a one season attends to the sixes, and everything that got her from where she started to where she is. Now. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you have the time, and by the time I mean fewer than 10 minutes, please go to T one D exchange.org. Forward slash juicebox and fill out the survey. All you have to be as a US resident who has type one diabetes, or is the caregiver of someone with type one. Your simple answers to simple questions will help people living with type one diabetes, they'll support the podcast and they may even help you t one D exchange.org Ford slash juice box
this episode of The Juicebox Podcast is sponsored by the Omni pod five, learn more and get started today at Omni pod.com forward slash Juicebox Podcast is also sponsored by Arden's blood glucose meter. The Contour Next One, and you can learn about that little gem at contour next one.com forward slash juicebox Are you nervous? You okay?
Anonymous Female Speaker 1:55
I was nervous and I bless nervous now.
Scott Benner 1:58
When were you nervous?
Anonymous Female Speaker 2:00
Oh, I was driving in to I'm it's I'm calling you from school. And so I had my commute to like, what am I gonna say? What am I not gonna say? And so, you know, I did 45 minutes of anxiety. And now we're here.
Scott Benner 2:16
You shouldn't have told me that because though. But anyway, go ahead and introduce yourself and then we'll kick on.
Anonymous Female Speaker 2:20
We'll go from there. Cool. So I'm, I have been diabetic. I was doing the math this morning for 20 years. And I am currently in law school.
Scott Benner 2:37
That's fancy. I'll tell you something. This weekend, we took our son on a trip to visit a college. And I think I think this is going to be the one she wants to go to. So we're sitting with it's funny, the counselor but I just looked at her and thought salesperson, this is the salesperson for the right. And I was like I've never seen a counselor this pretty before in my entire life. I'm being marketed to you know, not that she didn't know what she was talking about. She just looked like a runway model, which struck me as strange. And not that runway models don't need jobs.
Anonymous Female Speaker 3:14
I got to do something after you know the walking down the
Scott Benner 3:18
parks over right. Yeah, so anyway, lovely person, not the point. And she asks Arden, if you don't get in here, what else do you think you might do? And Arden had already been accepted to the school. So are in school. I've already been accepted here. Excuse me, I'm dying. Give me a second attention lady looked down at your paper. And what kind of sales job is this? You don't even know what you're trying to sell them. But anyway, she says to Arden, like, you know, what else might you do? And Arden goes, I think if I didn't do this, and by the way, it's fashion design. Arden because I probably be pre law.
Anonymous Female Speaker 3:57
I love it. I love it. The Kids Are All Right.
Scott Benner 4:01
Just like I was like, wow, I didn't have enough confidence to think I could do one thing when I was 17. And she's like, I don't know, I might do something way over here or way over there doesn't matter.
Anonymous Female Speaker 4:11
That's how I ended up in law school at 33 is I didn't have the competence to do it when I was artists. Ah, no kidding.
Scott Benner 4:18
What did you What did you go into college for?
Anonymous Female Speaker 4:21
I did college for international relations. And then mostly because I wanted to travel. And I thought I could help solve problems elsewhere. Then I became a teacher. And then I was a community organizer for about 10 years before law school.
Scott Benner 4:39
Oh, so you decided not to be president? Because I thought that was a presidency. No.
Anonymous Female Speaker 4:44
I like they haven't been letting ladies be presidents lately. lately.
Scott Benner 4:48
Not yet. My husband
Anonymous Female Speaker 4:51
wouldn't either. This has been farmed out.
Scott Benner 4:55
He's not looking to be on camera. I'll tell you what, though. They've done a really good job of discipline. hearing what's his name? Isn't that crazy? Oh, my goodness. He's been the first vice president, man. Like, I don't even know what that is for.
Anonymous Female Speaker 5:09
Oh, I was like, What guy? We
Scott Benner 5:12
don't know.
Anonymous Female Speaker 5:14
His name is Doug.
Scott Benner 5:15
His name is Doug. So you're telling me that Kamala Harris, his husband's name is Doug. Yes. That's what I'm telling you and what hold on and what is it Kamala? It's Kamala, right. Yeah. Kamala Kamala, I'm doing that wrong, too. We'll see. No, don't be sorry. My point is, is that if this I'm Doug emhoff. How crazy is that? You? Did you know that? You just need a dog? No, I
Anonymous Female Speaker 5:43
knew it was stuck. Mm hmm. I am a nerd.
Scott Benner 5:45
I'm trying not to show me. You were trying to post nice. See, I was trying to make the point that it wouldn't matter. Nobody would know who your husband was. Anyway, if you were doing that, but turns out you would know so
Anonymous Female Speaker 5:57
he's more likable than I am. They would all love him. Your heart of the Chest. Chest into Pete Buda, Judge.
Scott Benner 6:06
Husband sort of jasmine, we, I'm confused. Your husband's more likable than you are. Yes. How was that possible? You seem delightful.
Anonymous Female Speaker 6:16
He's a botanist. And so while I talk about politics and why the world is broken, he talks about trees likable.
Scott Benner 6:25
So he's just giving people less to think about so it's easier to be around him.
Anonymous Female Speaker 6:30
He makes a good cocktail. It's good.
Scott Benner 6:33
It's a good egg. Has he ever looked at a tree longingly in a way that made you uncomfortable? Um, I can't say no. Excellent. Okay. All right. How old were you when you're diagnosed with type one?
Anonymous Female Speaker 6:48
I was in ninth grade? I don't know. Maybe 13. Okay. So, the story there? Yeah. 20 years. So the story is, I was in junior high, they do it differently in Arizona. And I had to go to the bathroom constantly. I was so thirsty. I was like running between classes. And I went to my parents. I said, there is something wrong with me. I don't know what it is. Or there's something wrong with me. And my parents were like, you're growing, you're changing, like things are fine. It you know, bodies are weird. And I was like, no, no, there's something amiss. And they were like, nah. Um, and this went on for probably three months or so before we took a road trip, the classic road trip story, from Phoenix to Denver to see some family. And it was like every gas station on the road, like maybe not even gas stations, just like wherever we could find that we had to stop for me and my parents were like, there's something wrong with you. And I was like, I've been telling you that is that is true. Yes.
Scott Benner 7:56
Your parents not therapists or kindergarten teachers, obviously. Right? Right.
Anonymous Female Speaker 8:03
And so we went home, we did the whole vacation, and then went home. And at home, my uncle is diabetic. And so we tested. And I was like 501. And my parents were like, That's problematic. And so even then, like, we didn't rush to the ER unnecessarily, it was like, I'll call the doctor and see what they say. And the doctor tried to put us off for like, a week and a half. I was and then I asked my mom, did you tell her that the blood sugar was 501. And she was like, well now. And I was like, call her back and tell her that information. And then shoot, they were like, You have to come in immediately. And so somebody that I had been living with then so like Surly and overly confident. 13 year old became an emergency. Despite the fact that I was like, No, I've whatever this is, it's been here for three months.
Scott Benner 8:57
Yeah. How long have you been the adult in the relationship between you and your parents?
Anonymous Female Speaker 9:03
Maybe the whole time? No, I my parents are great, but like their child rearing philosophy was sort of like if we just treat you like an adult then like, you'll be an adult and it will be great. And for the most part, like I cooperated with that philosophy. I had straight A's I my like, weird rebellion was going to church like my parents were more like this is this is lovely. And so they were I think they were totally unprepared for something like diabetes to happen.
Scott Benner 9:35
Margie, do you think she'll use heroin? No, I think she's gonna go to church. That's great. So you so your parents, your parents were not very religious. So the way you rebelled against them was going to church?
Anonymous Female Speaker 9:46
Yes, my parents met each other on a blind date went home together that night. Then three nights later, moved all my mom's stuff into my dad's apartment and have been together Ever since. And so they they're just a little wild.
Scott Benner 10:04
Wow. They hooked up like lesbians. That's fast. Yeah. You have you ever been naked in front of your husband with the lights
Anonymous Female Speaker 10:12
on? SCOTT I can I can say yes to that question. Oh,
Scott Benner 10:23
there you go. I just love that as a child, you were like, I need to push back against these people. I'm gonna find religion. Did you find religion? Are you just going to church for a little while? I would
Anonymous Female Speaker 10:34
say I found religion. And then I do better. Yeah, well, I gave back religion. I don't know that I gave back God. But I gave back religion. I was like this. This was meant to control women. And I'm not that into
Scott Benner 10:47
it. Oh, you didn't like what you found. But you like the idea.
Anonymous Female Speaker 10:51
I like the idea of community. I like the idea of faith. I like the idea that there are things we can't explain. And I didn't like the patriarchal structure and this idea that, you know, yeah, there was there's a lot of things about church that didn't sit right with me.
Scott Benner 11:11
By the way. I don't know if this is narcissism, but I think I could explain almost anything, if you ask me. I think I'm not sure if I'd be right or not. But I come up with an explanation.
Anonymous Female Speaker 11:21
You and every law student? Oh, really?
Scott Benner 11:23
Is that how they work? Do you ever heard me talk about on the podcast that my eighth grade guidance counselor tried to get me to be an attorney?
Anonymous Female Speaker 11:31
I haven't heard you talk about it. I've considered it. And I think you would hate it. Because for sure, arguing arguing is great. But like the way that the law works is that whatever was decided before must be the basis for what happens next. And you'd be like, Well, what the why that that? I have a more elegant solution. Like why?
Scott Benner 11:54
No, I even knew back then when he said it. I was like, I think you're misunderstanding who I am fundamentally. But I mean, I think I could probably functionally do it, if that's what you're asking me, but I don't think I would want to. And if you've anybody who's ever heard if you've ever been in a business meeting with me, because this podcast is actually a business, and, you know, like I have to meet with people and have like real like adult conversations about how things get said and ads, for example, or, you know, you know, talking about money about paying for ads, stuff like that. And so I get into these very oddly, corporate settings, where people who are dressed very nicely, are sit sat up very properly in front of me, and I just, I don't talk any differently in those meetings that I do on this blog.
Anonymous Female Speaker 12:45
I think that's low key, the rebellion, I'm here for honestly,
Scott Benner 12:49
I'll come downstairs after a call. And my wife will say, actually, I'll just tell you an actual story. So I'm very friendly with the person who, who initially bought ads on the show for on the pod, but that person does not work from the pod anymore. They're actually out of the diabetes space completely. And I contacted them. And I was like, Hey, listen, I'm about to have a meeting with Medtronic about in pen. And I think they're going to come on as advertisers for NPN. And, you know, I don't I forgot what the question was the question I had for really, it's not important. What's important is at the end of the conversation, she said, Hey, in your first call, try to keep it to under three font. And I was like, I was like, that's your, that's your she goes, yeah, she's like, you know, you're gonna curse. And I was like, right. She's like, just don't do it too much right away until they know you. And I was like, Okay, so my, so the call finishes, my wife has no idea about this conversation I had with my friend, I get off the call, and I come downstairs and my wife goes, How many times did you curse on the call? And I was like, okay, half a dozen, but I kept the ducks to under three. And my wife said, I don't understand how you do business with people. I was like, I think it's the same as the podcast. I was like, it's, you know, we just talk like real people. And if it doesn't work out for me, I kind of don't care. You know, so I tell people all the time, I'm like, Look, you know, if we're going to do business together, you should no, this is me, like, this is how this is gonna go, if that makes you uncomfortable. You want to jump, you know, so
Anonymous Female Speaker 14:23
well. And so in my training as a community organizer, you will learn that a way to get people to share things with you is to be vulnerable with them. And so I find that like, sort of the engineered, swearing, etc. Just being who I am in a space often creates like better connection and relationship with people and so even if it isn't like the right norm for the space, I think that the vulnerability like transcends what you're supposed to do. And also, if I if I wrote a memoir that had to be titled in less than six words, it would Be my mom's favorite word is. So you're gonna get the fuck either way,
Scott Benner 15:06
when I'm gonna tell you a story, and I'm gonna keep the word out of it, but when we were young, like really young, 1920 years old, we were in a diner and I was philosophizing with my friends. And I said that I think there's a way to say anything to people, and have them accept it. Like, you know, by that I mean, not brushed up against it. And I was trying to make a bigger point about language and eye contact and communication and stuff like that. And so one of my stupid friends said, like, you couldn't say anything to anybody. And she's, and this guy says, I'm totally have to bleep this out. And also, I'm going to apologize to you ahead of time, but for context, he said, You can't use the word of the waitress without offending her. And I was like, I betcha I could. And I don't know. I don't know what made me say that. But I did say to him, I'm gonna need three tries at this because we bet money, you know, and I was pretty sure it wasn't gonna go right the first time, but it still didn't dissuade me. And I didn't say it directly to her. It's not like I identified her that way or addressed her I tried to work it into it did not go well, the first time. But we had to leave a really big tip. So probably all the money I eventually want on the bed I lost on. Like, as I was like, we're really sorry. But I did figure it out, I did figure out a way to talk to people in a way that, like nowadays, they people talk about, it's like you meet people where they are. Yeah, and there's part of that, that I believe is true. But there's a big piece of it that I believe is true, that you just said is about, like, if I'm not hiding anything, then I'm not a threat to you, in any way. Right? Like, I mean, you guys don't know me. Like, you know, empirically, but you know me pretty well. Like I'm not hiding any big things about me. And then, to me, that's the pathway to talk to people about diabetes, and have it be relatable and something you can actually absorb. But we should probably talk about your diabetes a little bit. No, I,
Anonymous Female Speaker 17:07
I was just gonna say that, I think that had something like the podcast. And specifically, like your approach to the podcast existed when I was 13. I think in particular, my dad's entry point might have been totally different. But my so in my diagnosis, story, fasting, fast forwarding to the ER, the doctor is in a panic, I am not in a panic, I am fighting this doctors nonsense to be nonsense. And that will be the theme of how I approach doctors moving forward in my diabetic life. But they they rush us from one side of town to the other side of town, to get us with in with the very best Endo. And he he says a lot of things, but he quickly shuffles us into a room with a diabetic educator, who was not speaking to my family and to me in the in a way that felt like they were being taken seriously. She was sort of trying to go really slow and explain it in a really elementary way. And no, my parents are wild, they are also very smart. And so they started to feel sort of tucked down to about diabetes. And I would say like, within 10 minutes, my dad had left the room, found out how much we were being charged per hour for this experience, came back in and said, Lady, you got 15 minutes, wrap it up. And so then we left and like that was the extent of my diabetic education. Um, yeah, so it, I just think things would have gone differently. But there wasn't, there wasn't an internet, there wasn't podcasts. And there certainly wasn't anyone talking about diabetes in a way that was like, relatable or tangible or approachable.
Scott Benner 19:02
Yeah, I will say that, um, it's always been, I really, I want to make sure that I preface this by saying like, I'm not coming down on anybody. For certain because a lot of good has been done for people over the years, by a lot of people. But when I launched my blog, it was pretty early on in blogging, and it none of this high mindedness about how to help people was in my head. Like, I was really just trying to draw attention to diabetes. And I thought, while I'm not a doctor, like I can't really help, like, I wonder if I can help this way. But I noticed pretty quickly and maybe it was just a function of the fact that it was new or that technology didn't exist the way it does now. But but people who talk to other people about diabetes mainly did what I call like, like raw nerve blogging, you don't I mean, like, they're like, this is how I feel. And then other people would run up and be like, I feel like this too, and they'd be like, we feel like this together. And then that was the end of it. And I always just thought like you're not gonna To help each other, you just gotta, like, look each other in the face and go, Hey, this sucks, right? Like, how does that, like, why don't we try to make it not suck? Like, wouldn't that be interesting, you know?
Anonymous Female Speaker 20:11
Well, and the timing of my diabetes was such that I was diagnosed, sort of, in the nascent stage of the internet. And then as I was coming of age and trying to figure it out, there was that sort of diabetic community that you're describing. And I was 0% interested in that, because I was like, No, I want the solution to my problems. I really don't want to dwell on having diabetes, I don't even like having diabetes, I just want a solution. And so I disconnected from any sort of, like information source, I would say, and so I've heard you sometimes talk about diabetics is like, this diabetic, or this is the sort of person that should get it. And I would classify myself as someone who like should have gotten diabetes, and understood it. But I didn't, I spent like, probably the first 12 or 15 years of, of my diabetes career. No, it's not a career. But of my diagnosis, being relatively uncontrolled, I saw the endo regularly, I took my Lantis every day and my my endo was cranky, my Lantis because he could tell that I wasn't doing anything else. But as a teenager, it was like, I have these four data points in the day, and I don't know what to do with them. I don't know how insulin works, really. And so I have these four data points that just say I'm bad at this. And there's nothing else in my life that I'm really extraordinarily bad at. So I'm just not going to do it. And I did that for probably close to 15 years. And I'd have like moments of like, I really want to be good at this. I'm gonna like make this chart and like do a week of testing. But I couldn't get past the end, like this probably won't make a lot of sense to people who, you know, enter diabetes with a Dexcom. Now, but it really was a different era and diabetes, when you had, you know, these four test strips that you were supposed to somehow figure out what was happening. And I just like couldn't do it. And, like, I'm not the sort of person that that meets obstacles and like, walks away from them. But I did walk away from diabetes for a long time.
Scott Benner 22:43
At some point on your diabetes journey, a person gave you a blood glucose meter. Did they say to you, hey, this is a great blood glucose meter, it's one of the most accurate ones that they ever made. No, no, no one said that. Did they say, by the way, there are other blood glucose meters, you might want to look into it. I'm just gonna give you this one because I haven't here in the drawer. Nope, they don't say that either. They just gave it to you. And you thought, Well, this must be my blood glucose meter, because the doctor gave it to me. But there are many meters. And they're not all made equally. You deserve an accurate, well made and easy to use blood glucose meter, you deserve the Contour. Next One. The Contour. Next One is my favorite blood glucose meter. I know that's a strange thing to say. But we've used a number of them over the years. And this one is my favorite. Why? Bright light for use at night, the screen super easy to read. It's manageable. And by that I mean it's a good size. It's not too big. It's not too small. And I love the way it fits in my hand. It's sort of because of the shape which you'll see it contour next.com forward slash juicebox almost feels like you're holding up like a pen in your hand. I don't know how to put it exactly. You'll see when you get to the website. But the Contour Next One blood glucose meter is incredibly accurate. But you might be worried Scott all this accuracy. Is it more expensive? Am I going to be paying a bunch more money? I don't think so. Actually, if you go to contour next one.com forward slash juicebox. You can actually buy it right now at a number of online venues. Walmart, Amazon, Walgreens, CVS, the list goes on and on target Rite Aid. And so when you get to my link, check it out. Because you might be able to save time and money buying contour next products from the convenience of your home. What am I saying? Well, I'm saying that it's possible that this meter and the test strips could be cheaper in cash than you're paying right now through your insurance company for an inferior product are crazy is that you owe it to yourself to be using the best equipment that you can and there's no reason not to check out the Contour Next One blood glucose is meter contour next.com forward slash juice box the Omni pod five automated insulin delivery system is available now and waiting for you at Omni pod.com forward slash juice box. Omni pod five is the only tubeless automated insulin delivery system that integrates with the Dexcom G six CGM, and it uses smart adjust technology to automatically adjust your insulin delivery every five minutes, helping to protect against highs and lows without multiple daily injections. Omni pod five is also available through your pharmacy, which means you can get started without the four year Durable Medical Equipment contract that comes with most insulin pumps, even when you're currently in warranty with another system. To get started today, go to Omni pod.com forward slash juicebox. Now for those of you who aren't in the market for an automated system, but still want an insulin pump, and love the idea of tubeless you're looking for the Omni pod dash, head over to my link Omni pod.com forward slash juice box. While you're there, you'll be able to learn everything you need to know about the Omni pod five, and the Omni pod Dash. And you can also find out if you're eligible for a free 30 day trial of the Omni pod dash. My daughter Arden has been wearing the Omni pod since she was four years old, and she just turned 18 That is 14 years of wearing an omni pod every day. And it has been nothing but a friend in this journey with insulin. Because the Omni pod is tubeless you can wear it while you're showering, swimming, or participating in your favorite physical activity, it's a big deal to not have to disconnect from a tube pump to do those things. Head over now to Omni pod.com Ford slash juice box to find out if you're eligible for that free 30 day trial, the dash to learn more about the dash, or to learn more about the Omni pod five, get started today on the pod five full safety and risk information as well as a list of compatible phones and clinical trial claims data are available at my link. And at that same link omnipod.com forward slash juice box. You can also find terms and conditions for that on the pod dash 30 day trial.
mean how many times do you have to be faced with the idea that you have a problem in front of you, you don't functionally understand or have actual tools for I mean, how much of your life you're supposed to spend beating your head against that wall like it does help me understand your explanation helps me understand. When I hear adults say like, Well, I'm just trying to live without this getting in my way. You know,
Anonymous Female Speaker 27:51
and it was relatively successful. Like I was going to college I was I had a job. Like, it was fine. It wasn't great. I was tired all the time. And you know, but it was fine. And so I definitely understand the adult like I'm just trying to live my life. Yeah,
Scott Benner 28:10
I have to clear my throat I apologize one second.
I'm sorry. It's Brian here. me complaining, like I'm not in control of my home. Like it's drying here. put somebody on that I'm the person. By the way, if something happens, I'm gonna fix it also, lets everybody pause for a second and appreciate what a mind we have here with. She used nascent in the sentence didn't stop to think about it. I didn't notice that she was like, Oh, I'm not sure if I'm using nascent correctly. Just whipped it right out like it was a part of our everyday life. Good for you fancy.
Anonymous Female Speaker 28:54
Lucky I don't hang up the phone. Right. Why I
Scott Benner 28:56
thought it was great. I love it. There are times there are times I swallow big words because I'm like, not that nice and to pick word. It's just not a common anyway, not the point. So you are managing along. I'm guessing your parents put it on you right because they thought you're up for the challenge I bet.
Anonymous Female Speaker 29:16
Well, yeah, I think they thought I was up for the challenge. I certainly told them that I was up for the challenge. I told the doctor the night I was diagnosed that I would not be staying in the hospital that I had plans to go to the movies. And I ended up going to the movies that night so I wasn't the sort of kid that was going to be easily dissuaded. And I don't think they thought they had any other tools that I didn't have. And I think they'd never experienced a disease that like it wasn't just like take the pill and you'll be fine. Like I don't know that they fully understood the complexity of diabetes and the need to calibrate and the the ways that my body was going to change over time it I think they sort of thought, if you take your insulin when the doctor tells you then that, yeah, this is all fine.
Scott Benner 30:07
Yeah. And so isn't it great? How you're just like, I've got this, I'm not even staying here. I don't need any of this. And then for the next 15 years, you're like, Am I really a pain.
Anonymous Female Speaker 30:19
And I was wracked with guilt. I was like, I'm very bad at this. I would go to the doctor, like, once a year to get my I was still taking my long acting, I would go once a year, I would find new endocrinologist whenever I moved, so that I could get that prescription refilled, I wanted to be good at it. I wanted to be taking care of my self, and I like just couldn't do it. And I felt like it was like a personal moral failing that somehow I couldn't do this thing that it seemed like everyone else was doing. There wasn't this outcry that diabetes was this like, impossible disease, such that I was aware of. So I felt really bad about it for a long time, which like was more feelings that kept me from doing anything about it, because I was like, Oh, I feel bad when I think about that. So I
Scott Benner 31:10
won't talk about it. Right? Let me ask you a question. Like, your outcomes, like a one sees where they wildly high.
Anonymous Female Speaker 31:18
Usually 10s ish,
Scott Benner 31:21
okay. And nobody pushed back doctors, parents, nobody's like, Hey, we're doing the wrong thing here. Like, let's help her.
Anonymous Female Speaker 31:31
So I think that my Endo, my first endo was like, she's obviously not doing what she should be doing. I'm just gonna keep increasing her Lantis so that at least I could get some insulin. That's that and some coverage. And she's not reporting crazy lows. So I can just keep amping that up, up and up and up. And then I was steadfast, I will not get a pump, I do not want to pump. The the, the I had like a thing about, I didn't want to think on my body, how was I going to wear a bikini how was I going to wear a prom dress like it. And there was no adults to say, it doesn't really matter what you want. This is your health. And so I just sort of got away with it. And then, you know, and also sort of the luck of the draw. And so when I was in college, The End Note that I saw, I think he must have mostly seen type two diabetics because his recommendations to me were that I needed to eat the same meal at every, every day at the same time. And to start with oatmeal to start my day was like, none of that. None of that was right. And so I grew distrustful of doctors and just was like, this is something that I'm just gonna, yeah, it's just gonna be impossible.
Scott Benner 33:02
So was it your thought that you're a bright person? Was it your thought that I'm going to die sooner than I should? Did you ever consider that?
Anonymous Female Speaker 33:10
I knew that I would have complications. And I was concerned about it. But I didn't know really the contours. I think if somebody had told me, You're gonna have injections in your eye, I might have tried to do something
Scott Benner 33:23
harder, or that some of those complications might involve, you know, your heart thing. Yeah, well, and even
Anonymous Female Speaker 33:31
even just saying, like your kidneys or your feet or whatever. I don't think anybody like made it clear to be like, what that life would look like it was just like, be afraid that you these things might happen. And it wasn't tangible enough to feel like it ever really couldn't happen. It's sort of felt like I had gotten diabetes. That was a pretty hand. And so it was unlikely that I would then get these other terrible things as far as I was.
Scott Benner 33:58
Oh, you had that like a meteor already hit me thing. Yeah.
Anonymous Female Speaker 34:04
And, and, like, compounded with the idea that I was already trying. I had tried it I had tried to do the right thing. And it wasn't working. So what you know, the definition of insanity, right? Like,
Scott Benner 34:22
do you just have any, like big psychological impacts on you aside of your health, like, were you? I mean, do you feel like you grew up in a way that was less healthy than then it could have been in your mind?
Anonymous Female Speaker 34:38
I think that I learned hyper independence at a young age. And I think that it made me hesitant to connect with people and less like dependent on people that I in my 30 certainly have been trying to like unlearn. But I also think that those same things led to a lot of my success. And so it's hard to say like, this was on that, like, on that, excuse me, and that negative when, like, you know, I'm in law school on a scholarship, like these things wouldn't happen unless I had learned, really, at a young age, how to take care of the things I needed to take care
Scott Benner 35:21
of. So interesting hearing you talk like that, because you basically just argued both sides of your issue, and both sides seem kind of positive, you're like, you were like, I learned to be very independent, which is a bad thing, because I'm guessing the rest of that sentence was I don't let people in and don't let people help me. And then the but the other side of it is I'm having success. Because, you know, enough, I gotta stop me. Like I say it a different way. When I tell people like, right, I always say like, if the zombies come you come find me because I'll be okay, when this is over. But the but the rest of that sentence is because my father was pretty horrible. And I know how to live through horrible, you know, and it's not it, and would you give one back for the other like, would die. Like, you know, if my parents were like, warden June Cleaver, which I'm pretty sure as a reference, literally no one's gonna get at this point. But I was all like, soft and, you know, couldn't stick up for myself, like, what I'd make that trade or, you know, what I trade, uh, you know what I would, I'm okay with a couple of backhands at a 10 years old for saying the wrong thing. And God knows, I don't remember what the wrong thing was anymore. But but, you know, like, is part of that valuable in one way? Not valuable in another way? Look, it sounds like I'm arguing for child abuse. But I'm not. I'm trying to say, I mean, what's the saying? Tough. Something about pressure and diamonds. Right? You know, yeah.
Anonymous Female Speaker 36:55
Right. When you, you know, just makes diamonds or whatever?
Scott Benner 36:59
Or is that just a bowl thing that somebody made up to try to feel better about the fact that their father was throwing them into a wall? Like you don't I mean, like, I don't know. But anyway, it's interesting.
Anonymous Female Speaker 37:10
Well, and to be clear, my my parents were both like lovely and supportive and showed up at every dive meet and gymnastics meet and tennis, whatever. orchestra concert, you name it, they were there. I just think that they weren't ever able to wrap their heads around diabetes in that particular way. But I take your point about, you know, how those things then shaped who you are, because the way that I handled the way that I handled diabetes for so long, I was able to do because I was resourceful. Like, I think I would have maybe found some people to like, shake it out of me or intervene. But I was never I've never been hospitalized for diabetes, highs or lows. I've never, you know, had any really scary episode. Well, there is a scary episode that we should probably talk about, but never anything that made someone say that your life is off the rails, I was always able to say, oh, there's a Snapple stand, I'll just grab a juice or Oh, like, my, when I was a teenager, we were hiking in the Grand Canyon. And I happen to not have anything but the guy that would later be my husband was like, Oh, I have these weird, like cyclist. Jelly packs that we use for energy at will those work. And so I was always able to like, find a way because that hyper independence had given me the skills to be really good at figuring out any particular complicated situation. i But yeah,
Scott Benner 38:48
I've been pretty fascinated lately. And I'm watching people like, contradict themselves, like guy, I just put up an episode today, actually, that was recorded probably six months ago, with these two kids were in grad school together. And I was kind of focused in that episode about how the guy kept saying, you know, I didn't let diabetes hold my hold me back. But of course, his health outcomes were not good. But right in his mind, it didn't hold him back. And then the other part so he had had diabetes for a very long time. The other person in the in the episode Tori, she was more newly diagnosed came up through the podcast. And I asked her I was like Tory, does diabetes hold you back? And she said, No, I was like, but Tories they wouldn't see us lower and more stable. So it is a function a little bit of how you come up with it, the technology and the ideas that were available as you were coming up. I apologize. And and at the same time, you know, everyone does the same thing. It's always like, Oh, my parents were great. But they weren't but they were like, like there's a weird like dichotomy in there, right? Like your parents weren't like absentee people, and they weren't like disinterested, they just didn't have enough information to take it seriously. And you're even saying, the understanding of long term complications where just a person standing in front of you go on your feet, your kidneys, you're gonna pee blood, like you don't even like just nothing. Nothing tangible that you could be, you could wrap your head around, and it probably seems so far out in the future like it was never going to happen. My example that always is that people smoke all the time, and everyone thinks they're the ones that it won't get me. I'm okay. Gonna go. It's gonna give everyone else lung cancer, but not you like that. That's how people think. Right? I do think that's preservation.
Anonymous Female Speaker 40:44
Yeah, well, and like I said, I really believed that. If I could have done something, I would have done it. But I had tried and tried and tried and felt like, well, the complication, if the complications are gonna come, they're gonna come because I tried my hand at this. And it's just that it's not
Scott Benner 41:02
for me, I'm not gonna worry about something I can't stop. Right. But you were also a child when you were having those thoughts.
Anonymous Female Speaker 41:09
Well, I was when I started, and then that's it went well through my 20s.
Scott Benner 41:15
Do you think there's no winning? Like, when I say to somebody, Hey, would you have liked it? If your parents were more involved? They'll say, yeah, if my parents were more involved, I would understand this bah, bah, bah, bah, bah. And this all would have went better. But then you talk to somebody whose parents were very involved, and you're like, Hey, how was it? Your parents been very involved? I didn't like it. They were constantly on my back. Like, is it just the scenario where you just can't win? Like you, no matter what you do, you're gonna want the opposite.
Anonymous Female Speaker 41:43
I mean, I think anything taken to its extreme is probably going to be problematic. I think where, because I rebelled hard against my, the, what my parents tried to do, I pushed back on and it was uncomfortable for everyone involved. And so I think, for me, it just would have been a few key moments of like insisting that I was on a pump, or or just? I don't know, it's, it's a good question, because I definitely wasn't the sort of child that was going to be babysat. And then they kind of way, I had developed enough independence at that point that truly, if every meal was like, What's your blood sugar, I might have murdered someone. And so but on the flip side, there, there did need to be someone in the room to be a more rational, objective person. It's interesting, because in many ways, my partner my husband is now does that for me. So I, the next sort of chapter in the story is that when I tried to get into control, eventually, I had a really scary episode, and developed a severe fear of low blood sugar, which I had never had for them, you know, 15 years, and he has become someone who can be we call it like the astronaut brain. Because astronauts are always looking for like, what's the next thing that's gonna kill me, but it has to be calibrated because it can't panic while you're in space. And he has a very, like, grounded logical brain that allows him to look at a situation and say, okay, the number the line is starting to get flat. Now, I can see logically the line is starting to get flattened now, where when I'm in a, when I'm in an anxious moment, he I will just be like, well, but maybe I should drink some more apple juice, maybe maybe I should just a little bit more. And so he can be a voice of reason where, you know, when you're living, whatever that diabetic experiences, whether it is trying to find a low or whether it is not wanting to have something attached to your body, like there is a little bit of illogic that happens because you're feeling the feelings, instead of like being able to view the situation from a third party perspective. And so I think that there were moments where my parents could have done that, like, more of a worthy objective party in the room. Let us bring you back down from your, the feeling you're feeling right
Scott Benner 44:34
as the adult who's not busy. I'd like to weigh in on I think we can stop drinking the apple juice now. Right. Yeah. You know, earlier, you just, you know how, you know, at the beginning of the episode, you said you had to think about things that you weren't going to say. I've just thought of something I think I need to say and I don't think I should. that interesting. Crossroads, I think Yeah, I don't usually. Okay.
Anonymous Female Speaker 45:02
I think probably just say it.
Scott Benner 45:04
I think I figured out what Arden's churches. Oh, so Arden's not a combative child. And she's, I'm using the word compliant in the nicest way. She's a very compliant person. She's, you know about her diabetes, she doesn't fight against having diabetes. But she doesn't like swallowing pills that get stuck in her throat. And so she's supposed to be taking probiotics and a couple of other things. And she treats them like you're forced feeding her poison, and she knows it's poison. And the poison has razor blades wrapped around it, and you're trying to kill her with a gun at the same time. And I'm thinking now, is that where Arden finds her control over the uncontrollable stuff in her life? Like, does she just pick this little thing that she thinks, Oh, this isn't going to kill me? And I'll I'll make a stand here. So I feel like I'm in control of something. I'm glad you came on. Could be and where was Erica? She's done like 10 episodes about mental health stuff. I've never had this breakthrough with her. I hope she's listening. Let me down. Now, this was really, I actually decided to put it in the episode thinking maybe 35 year old Arden will hear this one day and be like, oh, yeah, that probably is what was happening. Maybe she'll call me and apologize. I mean, call me and tell me she misses me. Would that be weird?, hold on a second. You're jumping over this? What if in the future, my daughter calls me to say she misses me. And it's because of something I did in 2022 on a podcast.
Anonymous Female Speaker 46:47
I don't think that you're the sort of person she'll ever have the space or time to miss honestly.
Scott Benner 46:53
I'm insulted by love. Oh, no, I appreciate that. I can fill a room, you have no idea?
Anonymous Female Speaker 47:04
Ah, um, yeah, I think that it's been interesting to hear you talk about your sort of path with art. And because it's just so diametrically opposed to my, like, teenage years that it's hard. It's really hard for me to understand. I mean, Arden is certainly from a different generation than me, but like, the degree to which I fought diabetes, just doesn't seem to even occur to her at least from your description of it.
Scott Benner 47:38
Yeah, for the most part, she's getting ready to go. I think it like a day or so I said it funny. I don't even really know. I think it's early Thursday morning. She's gonna get on a plane with her class and fly to Disney. And they're gonna stay there for. Again, this is embarrassing. I don't know, three or four days. a while, you know, that'd be more than a day, you know. And I just got off the phone before I spoke with you with the traveling nurse that will be at Disney and I explained how we were going to do everything. And I said, you know, if you want to follow her Dexcom you can she said she would and I laid the whole thing out for her. She actually has a little bit of background with diabetes and that she helped an autistic child with type one at one point. So the kid was very unaware of the diabetes, and she had to know more about it. So I could hear in her descriptions that she saw some bigger picture stuff about overtreating and things like that. So I was like, Oh, this will be good. So we set up a group chat between my wife art and myself and the nurse. We're going to invite her to Dexcom later. I'm not nervous about that at all. I think Arden is going to go to college, 14 hours away by car. And I'm not even nervous about that. Like I think this is all going to work out okay. But it's important to say that when I say I think is going to work out okay, top line of what okay means to me is Arden's blood sugar's are stable within a certain range, and that we do everything we can to that that is first and foremost, like if she and I have to argue about probiotics. I am even cognizant of when we're arguing about it that at least we're not arguing about insulin. Right, right. Like that's most important and I guess maybe I didn't realize it but I think I think in that astronaut way you were describing I think of it as no first I say no to I find all the things to say no to first and then I thought and then I find the right things. My wife and daughter do not enjoy my thought process around that. But I eliminate all the problems and then I just enjoy the rest of it. But some I mean, you know go the opposite I guess.
Anonymous Female Speaker 49:59
Yeah. I am for sure the opposite, but I can appreciate the the It pairs well in my marriage just what I would say, Claire's. Well,
Scott Benner 50:12
I fascinated that you into the Grand Canyon without any fast acting carbs whatsoever.
Anonymous Female Speaker 50:17
Well, I had some in my bag, I just went on a five mile hike down the canyon without any, you know, that's fine.
Scott Benner 50:25
Okay, it worked out. All right. What else? Oh, here, why else? Why else are you on the show? Because you I remember you said things in your note. I don't know if I've gotten any of them.
Anonymous Female Speaker 50:36
Who knows what I said. Um, so I think the other piece of my story that could be helpful is so after. After a string of terrible endocrinologist, I found a good one. When I moved to LA, I found a endocrinologist that was, I was like, I'm gonna find someone who's great cutting edge of research, like, I'm just going to, I'm going to see if I can't find the best in the field to solve this, because I'm tired of having this like burden that I'm carrying around every day that is unsolvable. I found a doctor who was able to like recognize all the different pieces of what was happening to me, she got me on a Dexcom she started making changes to my long acting insulin. And was sort of cognizant that I wasn't going to be able to immediately switch to being on the pump, because I had fought it for so long and had this like, psychological stuff happening. But she was sort of also staying in her lane as the doctor and so she was like, You should probably talk to someone. But also, you know, we're gonna just make the small changes over time. So I switched to try Seba I, I tried to Frezza for a while. And we were sort of messing with my regime. And getting, you know, slowly but surely, making step taking steps out of a onesie, it took probably much longer than it should have. But, you know, we were going from 10 to eight. And it was like, Okay, this feels like progress, at least. And in the middle of that process, I went on a vacation, my husband and I went to Portland. And I always ran high. Obviously, I wasn't taking enough insulin. But when I would step away from work, the lack of stress often made me have lows that I wouldn't otherwise have. I would just regularly on vacation have these low loads that like in my normal day to day would not exist. We go out, we spend the day walking around, probably walk 10 or 12 Miles exploring the city, have a couple drinks, come back to the hotel room. It is, you know, probably 10 o'clock at night. And I want to have this donut from Voodoo Donuts. I think it's so fancier and gonna still live my best life even with diabetes. But my blood sugar is still high despite having walked around all day. And despite, you know, having tried to dose for dinner, and so I'm frustrated. And I take 10 units of human log thinking I'm covering the donut and also range bolusing for all the stuff that I've done throughout that day. Little did I know at the time, I was still taking too much long acting insulin and I had recently switched to Joseba, which was slightly more impactful than the Lantis that I was on. And you know, the effect of alcohol plus this rage Bolus meant that I wake up in the middle of the night, the Dexcom alerted that you're falling fast. And so I had fallen I would think I was falling. I want to say it was like 30 or 35 points each five minute time and so I'm just looking at this chart, but and seeing this like roller coaster of like, I'm gonna die. Like I'm not I'm not low yet. But looking at this and if I just keep drawing a line like this is aligned to death. I wake up my husband and freaking out. I am not in the middle of the Grand Canyon with no sugar. I have lots of sugar. So I'm drinking juice. I had some starbursts, I think trying to bring it up. But I'm panicking because I can see this like precipitous drop and start to get super anxious and I'm now crying and having sort of shortness of breath and eventually I work myself into such a panic that I start throwing up. And then at that point that only compounds the panic Because I now I'm like, Well, I'm not holding down the carbs, but I needed to bring me back up. And like, I'm just I'm gonna die here in this hotel room in Portland. What am I going to do?
Scott Benner 55:12
Was the Portland part the most upsetting?
Anonymous Female Speaker 55:17
No, I don't really have it out for Portland, lovely city. But I, you know, hyper independent, hyper aware I call an Uber I call taxi and I call the paramedics. Because I was like, I don't know this city. I don't know who's gonna get here faster. I don't know where the hospital is. And so interestingly, the taxi got there first and the paramedics then the Uber.
Scott Benner 55:42
I love that. That, by the way, is so freakin amazing foresight. You're like, three modes of transportation, whichever one gets your first.
Anonymous Female Speaker 55:54
And so when the paramedics showed up, they were like, well, put your blood sugar's not actually low. Because at that point, I think it was 70. And I was like, but look at the graph, it's gonna be low, like it's gonna be low. And they were like, man, we cannot treat you
Scott Benner 56:12
Was your husband sitting in that uncomfortable chair in the hotel room calling ex girlfriends gonna be like, Hey, I'm sorry, we broke up.
Anonymous Female Speaker 56:22
What I can say for him is that he has very chill vibes, very chill about the whole thing.
Scott Benner 56:29
A tree? He was like, Oh, no. Well, if
Anonymous Female Speaker 56:33
she, if she dies, I'll still have the trees.
Scott Benner 56:36
So did that experience, give you more anxiety? Or see because here's what I'll show you how your brain and my brain aren't similar, and yet are really I'm really enjoying talking to you, by the way, and are similar in different. What that would prove to me was, Oh, I could stop up a crazy fall. Like I did it. But what it proved to you was your blood sugar could fall on anywhere and you're gonna die. Is that right?
Anonymous Female Speaker 57:02
Well, and it, it seemed unpredictable. Like I had never had something like that happen. And so it was like, I couldn't trust the insulin. I in my lead up to the story. I gave you all the reasons why this happened. But in the moment, it was just like this is this uncontrollable unexplainable. Like I I did all the right things. And you know, diabetes is just impossible to understand
Scott Benner 57:29
coming again. Yeah. Yeah, I have a question. So you were you weren't like low while you were making those decisions yet. So you were like, like, you were panicking. But your your brain was functioning?
Anonymous Female Speaker 57:42
Right, right. So I could feel the drop. And I could, and I was like, deep in anxiety. And so this very, very kind. paramedic was like, ma'am, do you have anxiety issues? And I just started sobbing. looked at my husband and my husband said nothing as the life man.
Scott Benner 58:08
Now she's got a completely together. I've never once even noticed her shake her fingers. Like she doesn't get even nervous. That's fine. I'm just gonna go over here and look at the law. So So do you have do you have anxiety? Generally speaking?
Anonymous Female Speaker 58:23
Maybe, I don't know. How do you not know? I mean, I would the answer is probably yes. But like everything else. It's in degrees ingredients. And it depends on. Like, it's one of those things that like saying that you have as much like saying you have diabetes, saying that you have anxiety sort of it's like, oh, you have this uncontrolled, irrational anxiousness. And I would say that that irrational anxiousness is often prepared me well for various situations that
Scott Benner 58:58
you people call irrational I'd call getting ready. Now if you'll excuse me, I have to put much into a five gallon bucket in case the Russians come.
Anonymous Female Speaker 59:11
My husband and I do you have a vague outline of what would happen if if we got into an apocalyptic scenario. And our friends know this and nowhere to go?
Scott Benner 59:21
So interesting. I know I've said this on here before but it fits here. I know which one of my second floor windows I would jump out of if I absolutely had to jump out of the house. Like I have a plan for what I would do if I met a bear. I know what I would do if I found a bottle and the Genie was inside of it. I have a lot of plans for things that aren't going to happen. But I don't. I also want to point out that I didn't spend a ton of time on my genie plan. It was like five minutes when I was 12. It made a ton of sense and I've held on to it like throughout my life. I was just very concerned, that if I found a Genie in a Bottle I would end up with a fast car, a huge penis. And like something else that I couldn't use five minutes later get an amen. So I was like, I was like I wanted, wanted to make sure I was thoughtful about it. In case it should happen, anyway. But I'm not I don't think about that constantly. Like, I don't have any anxiety around. Oh, if the house catches on fire, I don't own a ladder that goes a rope ladder. Although now that I said it, maybe I'm gonna get a rope.
Anonymous Female Speaker 1:00:30
That's what you that's. But I think you're you're articulating the key distinction is that lots of people are running around very anxious, but they've not went got pills for it, or they've not identified it as a problem. Because most of the time, it's helpful. Yeah, I'm anxious. Right? Yeah. But you're describing anxiety. But it's that your planning is so good that you don't have to get into scenarios where your planning has fallen short.
Scott Benner 1:00:59
first wish, no matter what I wish for next comes true. Second wish I don't die before I can make my third wish. Then I wish for unlimited wishes. And that's it. Because I'm, I need the unlimited wishes because I can't figure out like how to like get this down to three things. And I know for certain that I'm going to drop that before I get the wish out of my mouth. So and then I know my fourth wish will be about health and my friends and my family. Like I'll put everybody in a good place. And then I'll rebuild my life the way I would if everything was perfect, and then probably ruin it and then live forever and hate myself for eternity. That's probably what would happen. I wonder how much of that was sarcasm? How much of it was true just now?
Anonymous Female Speaker 1:01:50
I'm like a true anxious person, honestly. Yeah.
Scott Benner 1:01:54
I find myself to be prepared around ideas. And it goes back to I will tell you that when I was a child, I would imagine my parents death so that I would know what I would do if it would happen. You think that's anxiety? Can't say I haven't been there? Oh, no kidding. I'm incredible. Maybe you're not anxious.
Anonymous Female Speaker 1:02:16
the paramedic begs to differ
Scott Benner 1:02:18
as a paramedic, what's you know, it's probably he was probably on mushrooms when he got there else is Portland.
Anonymous Female Speaker 1:02:25
Right? Correct. Yeah. Um, so we go back up to the hotel room, I'm still falling a little bit in has slowed down, I eventually do have low blood sugar, right about the time that we sit ourselves down at the actually it wasn't when we sat down it was when we when my biscuits and gravy and two giant Apple juices are delivered at the diner across the street from the hotel. So again, like hyper preparedness is a thing that has served me well. But after that moment, I had tremendous anxiety that at any time, in an uncontrollable unexplainable way that I was going to have low blood sugar. And I wrote in the two hundreds and even, there were there was a time where I was uncomfortable below 250. And I just couldn't, even though I had run around, you know, even though I had had this childhood full of doing all kinds of insane things never knowing or caring what my blood sugar was, I could suddenly below 250 was like, hard pass. cannot do it. Um, and so
Scott Benner 1:03:38
hello, I had this I'm sorry, how long ago was this?
Anonymous Female Speaker 1:03:41
Um, I would say, five years ago.
Scott Benner 1:03:45
I'm sorry. Go ahead.
Anonymous Female Speaker 1:03:47
No, no, no. And so I then had like, essentially, then went to move to Colorado found a new endocrinologist and I was like, I want to get this under control. And I'm willing to do anything put me on a pump, I think I think I should be on a pump. This doctor had heard that field before and was like, come back in three months, we'll see if we can put you on a pump. And I was like, No, I'm a serious person. And he was like, come back in three months. So I came back in three months. And he put me on a poem. And we but in that in that three months, I also went started seeing a therapist who was a diabetic and we just like really did intense cognitive behavior interventions to slowly but surely make small changes so that I could do the thing that you're talking about, which is like, see what the insulin did does trust that it does that every time. Trust that I know what is going to happen, and over time have been able to Now my agencies like in the sixes, my endo is like hi, bye loved it, love to see you. But it was probably like three solid years of work.
Scott Benner 1:05:10
At what point in that process? Do you find me?
Anonymous Female Speaker 1:05:15
Pretty early. So after I want to say after I started having this anxiety realize I need to solve it. I'm like, I just need to fix sort of my relationship with diabetes, and I start to do all the things that I was a hard pass on before. So I joined some Facebook groups, I find the podcasts, I ordered some books online, I was like, we're just gonna, like immerse ourselves like denied the days of denial or past we have to like know what's going on. And so I found found the podcast listened straight through to the defining diabetes portion. That was called the pro tip.
Scott Benner 1:06:01
Defining variables. I got the pro tip episodes, newly diagnosed or starting over episode two times. Yeah, yeah. Okay, so
Anonymous Female Speaker 1:06:11
I started there. And then just like, after I got through those, just listen to whatever was next in the feed. And at some point, you said something that truly, I think changed my relationship with diabetes, which was just like, if you want to, if you want more control, like, you should take less insulin, you won't have those swings. It's not, it's interesting, because it's not the like, take more be bolder thing. But it's like, these big doses of insulin that you're taking are then causing these crazy schemes. And so if you can just take a little bit that apple juice would cover, you'd be fine. And I was like, Oh, I can actually just do that. Here's a unit. Here's a unit and a half, like, that's fine.
Scott Benner 1:06:54
The Bumping and nothing made sense to you. Yeah. It's interesting, isn't it? How? My thing my words, whatever they are, get interpreted by different people different ways. Like I, I agree with you. I don't think I'm I don't think of how am I gonna say this? I'm not bold with insulin in the way that some people would think of those words, right? I'm bold in a way that to me means I use insulin in a way that most people don't think about using it. I'm bold in that it's different. I don't mean that I'm like, you know, like, hey, just drink the vial. Let's see if it works through your stomach to like, Let's inject it in both arms at the same time. Like I'm not like some crazy guy throwing insulin around all over the boys. I mean, my daughter's got some larger bowls. Is it times based on on how her settings are? Actually I was looking earlier while we were talking. She's at school. So I don't know what she ate. I have no idea because I'm not with her. But she Bolus 65 carbs was like 14 and a half units. Oh, man. Yeah. And I mean, she's doing alright, her blood sugar's 145. Like, it's level. Like, it looks like it looks to me like she didn't Pre-Bolus and that she over Bolus for something knowing that she didn't Pre-Bolus. And I've never actually even said that to her. Like, that's just something she's picked up from what we've done, you know, but anyway, I'm sorry, back to the, the terminology that gets thrown around. That gets sometimes attached to me. Like, I don't know, like it. The whole podcast has gotten too big. Like, I can't have a private conversation with everybody. But I think if someone came and interviewed me, you'd be surprised at some of my answers. Because I do think exactly what you just said. It's, it's about timing and amount. And if you use the right amount the right time, and you never get high, then you don't have to correct and if you don't have to correct a big high, you're not going to upload later, you know, nothing's perfect, but likely in that using more targeted insulin is is the way I can see where somebody who has had diabetes for a long time might hear the word bold and think I'm just talking about like use a mallet like Thor's hammer full of insulin but generally,
Anonymous Female Speaker 1:09:22
the dose I took in Portland like that was bold. It was wrong decision.
Scott Benner 1:09:27
Yeah, I mean, I don't know if you were bold with it. So you might have been like, poorly thought out and stupid with insulin. Like I don't rage I don't think of I don't think we rage Bolus ever. Like I've never just been like, just use a massive amount of insulin that I don't know is being covered or not because I gotta get out of this thing. Like, I'll crush it and catch it. But that's still a fairly well thought out process based on my experiences with insulin. So anyway, it's weird to put your thoughts out into the world like this and have so many people hear them because when you You hear them mirrored back at you. You're like, Oh, I didn't mean that. But, but it's almost like it's almost like a book review. Like I realized one day, like, if I'm going to take a good book review, I gotta take a bad book review. And if, and there are people who have heard me say something and applied it to their lives and had a lot of success with it, and sometimes when I hear them talk about, I think that's not what I meant. But, you know, like, if it worked for you great, like whatever you took from it. I think maybe I'm learning over time that even more, I'm gonna say something I don't know if I believe completely, but maybe more important than the ideas is the conversation. I don't know, maybe?
Anonymous Female Speaker 1:10:44
No, I mean, I think that that connects to sort of one of the other things that I would just say that I wish I had known sooner in my diabetes journey is that like, the community actually does matter. I think I spent like 20 years not believing that the community matters. I was like, it didn't matter. I have this struggle with diabetes, I don't need to talk to anyone about it. I don't need to, like, have people feel bad for me. I don't need to explain why it's awful. Like we all know, it's awful the end. And I like a shoe the idea of diabetes camp, I was like, What are we going to like build pink Priuses and sort of shoot them out into the lake and burn them in effigy like a Viking funeral, like I just didn't understand or appreciate, like, what it would mean to have a community and what the value could be. And I do think it is like, to your point, the exchange of information, and the like perspective that you can get from seeing someone else do it differently. Yeah.
Scott Benner 1:11:53
So I think a lot of pride, even though you weren't speaking to me, just then I take a lot of pride in that you feel that way. Because and again, this is not a judgment against those people. But in the beginning, when there were just a few diabetes blogs, they were all long term type ones who were living pretty scared lives, they were scared of lows too. And, you know, we'd make the same joke about diet soda over and over again, like, I can see why you wouldn't want to be a part of that community. But also, that was their truth. And they were sharing it. But the problem I always found is that then the community got built around voices that didn't know what they were doing all the time. Like, it's not that their stories weren't important, because they're incredibly important and sameness and community in that way is is valuable in a way that's hard to put into words like I'm not, I am not coming down on what happened. I just think that that's where it started. Like, if there was no diabetes community, before the day I decided to make this podcast, it's possible that that community would have built out around the idea of, you know, maybe you have more control over all this than you think you do. And, and so it got built out that way, I can see why it drew a lot of people in and I can see why it repelled a lot of people away. Also, you just threw in a skewed, like, into the conversation like none of us were gonna hear it. You and your fancy education.
Anonymous Female Speaker 1:13:24
I went to state school. It's not that fancy.
Scott Benner 1:13:28
I'm just teasing you. I like your usage. I heard it, I'm just I'm giving you props. I like to use it anyway. My pride comes from thinking that maybe there's another generation of people who's, you know, who will be a little bolder in their ability to find answers for themselves, and to apply things that they've learned. You know, I just watched in the Facebook group yesterday, this person, and I understood where they were coming from. So they get into account, they're newer to the Facebook group, they clearly don't listen to the podcast, which is a weird dichotomy for me. Because in my mind, I don't even know how you know about the Facebook group if you don't listen to the podcast, but it's gotten to that point where my Facebook group has become so popular and big, and I think valuable for people that it attracts people in anyway that never heard the podcast. Now you have a newer diagnosed child, the parent is real fear based at still, which is understandable. Some person asks a question, and the responses start coming back that are very rooted in the podcast. And there are people saying like, hey, try this episode, try listening to this Bah, blah, blah. And it just overwhelmed. One person who came in and was like, you can't listen to a podcast over your doctor. And I was like, whatever. Like she can say whatever she wants. I don't care. Like, like, you don't mean so they're having this conversation back and forth. But I could see how afraid she was. She was afraid that someone was going to say something that another person was going to misunderstand. And it was going to be detrimental to their health. And she felt so passionate about it that she kept arguing. And people were like, look very kind to her, I thought, I thought the conversation was very clear, like, look, you know, I think you've you, maybe you should try this. And she just kept pushing back, I could tell she felt like she was saving someone's life. And so I didn't, I thought nothing of it, I let the conversation go on, and on and on. It actually wasn't until, and I very, very infrequently do this, but I had to, like, block her from the group because she started DMing people, like really fearful things. And I thought, well, this is such a strange thing. Because one day, this lady won't feel this scared. And she will look back on this moment, and be embarrassed, and she shouldn't be, but but she will be. And, but that's if she's lucky. And she gets the information, and she figures out how to collate it and use it in her life. Or she might just blow off into the breeze like you did as a kid, and live there forever. And I felt a real responsibility to not let her just fade away. And it wasn't until she, you know, went behind people's but like she was doing it privately that I thought, Okay, I can't give her access to these members, they need protection from something like this. But I would have been happy if she would have kept the conversation in the space. Because I think it could take her months to grow away from that fear. And I wanted her to be able to do it. But she got a little too internet crazy. So it had to stop. But Well,
Anonymous Female Speaker 1:16:38
it's interesting to watching sort of the juicebox community because it so many of the people that are in it are parents of type ones and not type one themselves. I mean, there are people like me too, but there it creates this interesting dichotomy because like the idea that you would just trust your doctor 100% When, when you're a diabetic, you know, you have to then go home and make these decisions. And that it all is kind of a gamble, and that the doctor only knows like this much of your entire diabetes, sort of experience in life. It may, I don't know, maybe I'm just like, a naturally skeptical person. But it the idea that you would just be like, what only the doctor can know, is something that is hard to understand. But I think that if you're a parent of a child, and like watching that unfold, I can imagine how scary that would be. And so you have to trust the only thing that is saying, I'm correct, I'm
Scott Benner 1:17:40
right. Yeah, right guys got a coat on hat. And there's a thing hanging on his wall, like he must know. Actually, you know, it's funny. I know the makeup of the Facebook group, there are way more adults in there than you think they're just very quiet. They don't talk. They don't talk as much as the parents. But they're there. I don't know that it's 5050. But it's closer to 65 divided than you than you might think it is. It's very interesting. And when the adults do pop up their stuffs always super valuable. Because they've got context that that the parents don't have. I'm proud that there's an interplay in there between adults and parents, because it's hard to I don't know, I don't understand people's minds and why they, they they run off into teams, and they want to be on teams. And it's all important, like I'm an adult with type one, and you're a parent with type one, or you have type one, and you have type two, or you like the Kansas City Chiefs, and I like that, like I don't understand why people care about that, if I'm being perfectly honest. But it happens. It's very real. And any time that you can bring a couple of teams together and let them see each other's you know, inner workings, I find it to be really valuable. Anyway,
Anonymous Female Speaker 1:18:55
I saw I saw a post this morning about silver linings and you know, she clearly a new a newly diagnosed kid and she's just like, there will never be a silver lining. Like what is this person even asking me about? And I was like, Oh, I could probably articulate some silver linings having lived with us and and like I'm someone who has complications. I'm someone who has done the whole roller coaster and I could still probably articulate a few. So I do think that that like Interplay from being able to hear from someone who's further along the line to when you're just newly diagnosed is one of the more beautiful parts of the podcasts in the Facebook crew. I think
Scott Benner 1:19:37
one of the cool parts about my job is that I saw that post as well. And I know where it's gonna go, because I've seen it 100 times before, and it's gonna go in a really good place. And that person is going to get a lot out of it. I even know how they're going to feel when it's over. Because I've seen it play out so many times. There are times when I see stuff like that pop up and I go Oh, that's good. But I can't wait for people to have this conversation, that's a great conversation for them to have just the same way as sometimes somebody says something like, there's no good end to this, like this is, this is not going to end well, like it can't like it, just it and not that it couldn't, by the way, everybody could make the right decision. But I haven't seen it yet.
Anonymous Female Speaker 1:20:20
You have so many people in a room, it's just headed in that direction,
Scott Benner 1:20:25
almost feels like what it might be like to be like a judge, and have presided over 10,000 cases, like when you're 70. And somebody you know, in the to the plaintiff and the defendant stand up and they start talking, you're like, I already know how this is gonna go. You know, like, it's not that people don't have real agency, it's just that there are a finite number of decisions you can make. And eventually, you know, I know we all like to feel special, but my life's not much different than, than yours, and vice versa. And you sometimes you just know how it's gonna work out. So I love watching people find answers. And I like watching them get to them in ways that I at least believe are valuable. in a bigger way than just what I see in front of me, like, I know how growth goes like, like, there are people who, who email me. And they, I mean, they, they feel like their five seconds of throwing themselves off a building, you know, and I just tell them, like, I already know how this is gonna go, like you don't know, but trust me, here's what you need to learn. Once you learn that, apply it after you apply it, you'll feel better after you feel better, you'll see a bigger picture, eventually, you know, six months from now, you won't feel this way. And you'll send me an email and tell me you don't feel this way. And then six months from now, the email comes back in there. Okay. So I mean, if everybody can believe me, it's gonna be all right. Just gotta get your basil right. Pre-Bolus and learn about the different impacts to your foods. And yeah, you'll learn how to use insulin, it'll be okay. Do you have to go? I saw you look aside.
Anonymous Female Speaker 1:22:03
I've got 10 minutes.
Scott Benner 1:22:05
Do you have anything? Are you? Well, then here? Here's the question. Is there anything that we haven't talked about? That you want to talk about?
Anonymous Female Speaker 1:22:15
That's a good question.
Scott Benner 1:22:16
Want to throw out a couple of big words or anything like that? What other words do you know? I know some words. Yeah, are they gonna be?
Anonymous Female Speaker 1:22:26
So I think that what I will say, I think I would just double down on the community piece. So my whole life, I didn't know anyone that was diabetic, it was just me. And I suppose my uncle, but he's had a hard life. And I was not something I thought of as a role model. And so I and I always thought that was fine. And I think that. So coming to the law school, there happens to be like six or seven of us running around with Dexcom here. And there's a there's a little bit of a Dexcom exchange and a low blood sugar Exchange, or a low blood sugar treatment exchange. And there's a crew of girls that like follows each other. And that is the first time really that I've had that in person connection. And I got a taste of it in the podcast, and then was willing to, like, do that in real life. Because I had seen like how much the podcasts had benefited how I thought about diabetes. And I just think that if there was one thing, I would leave like parents with of type ones with but also type ones too. Like, you should probably go find a community, even if the whole idea is abhorrent to you or if it's like pretty difficult. I think that there is real value in not being alone in this disease. Sorry, I was trying not to swear. But are you
Scott Benner 1:24:08
with her so much? 234567. I've made nine notes of where I have to pick out cursing, figuring it out an hour and 20 minutes into it.
Anonymous Female Speaker 1:24:21
No, no, that was the tame version. Honestly, it was it was the censored version.
Scott Benner 1:24:27
I think that community can have a bad connotation for people. I think that they can see it as Kumbaya and we're all going to just like say positive things to each other. And you know, and it's gonna be a lot of people don't want that. I have to be honest. I wouldn't want that either. But,
Anonymous Female Speaker 1:24:45
I mean, that's what I thought it was. I honestly thought that like when people talked about being in community, it was like we're gonna hold hands and talk about the Dexcom sensor and I was like, No, thank you to all of that. Right? Yeah.
Scott Benner 1:24:58
I'm Good. But it what it really is, is it's an invisible support system. And that's important. Like the not feeling alone is really important. Not Being alone is more important. And I think that's where the blend of, I mean, if I can, like, I guess I'm going to speak for myself here, which is gonna, I'm gonna sound like a douchebag in a second. But I think that what I, in a second, do you think most people were like, yeah, and for the last hour and a half those podcasts, and most of the episodes, but at TQ people I say, off, but I think what I've done is that I've found a way to take the community and blend it with actual, like ideas that are helpful. So that the community can just be this thing, like, it's supposed to be like this, this energy in the background that exists, and it will buoy you, but isn't something that you physically have to be touching constantly to be a party to? theirs. I someone should do a dissertation on what this podcast is like one day, like I hope I live long enough for somebody to break it down as their grad student project. Because I think that between the information that's in my head about insulin, how I think about the world, my ability to communicate with people, my ability to take something that I mean, let's be honest, should be really boring. And I think I do a pretty good job of it not being boring. And then to bring all these people together from all over the world, by the way, like, I don't have as many international guests on as I could. But people are listening everywhere, and just how it's empowered people from somebody who's had diabetes for 20 years and, you know, felt like they were at a loss to people who have, you know, just found that they felt that they have diabetes today. And and delivered a message that they can all on some level absorb and find useful. I mean, honestly, I don't know how I did it. Like you don't you mean, like, it just worked. I just, I don't even feel like, I don't even feel deserving of saying that I did it. I just had this idea. And I kept falling it to where it makes sense next, and building on it where it makes sense. And there are plenty of ideas that people had. I'm like, No, that's not right. Like, and I don't know if I'm wrong, but I've ignored things that, like right now people are trying to get me to start a babysitting thing. And I'm like, yeah, no, I can't, like I have a finite amount of time. And you don't understand the legality around that. Like, I can't be involved in you finding a babysitter who shows up in your house and then takes the Ginsu knives and kills your dog. You know what I mean? Like that? I can't be involved in that. Is it a bad idea? It's not, but it won't reach as many people as you think it's, it's a finite need in a certain age. You won't reach as many people as you need to make it popular, like I know, that can't work without like a ton of money, and I don't have that money to put into it. So I'm able to kind of like go, no, that idea is not good. But then, you know, bringing Jenny in just that was obvious. And well, you know, sorry, no, you're fine.
Anonymous Female Speaker 1:28:18
I feel like I've told you this in maybe several Instagram posts, because it comes over me as an organizer a lot. But it does, like the structure of the podcast seems like very much grounded in the principles of community organizing, and that you have this like, belief or belief system. That is, you know, what works, essentially, and then you've just been talking about it, and that people, people will hear it. And if they like what they hear and believe what they hear and find it useful, they stay. And then you start to build this group of people. And I think what's cool is in the time that I've sort of been watching, I see, like leaders, so there's a whole there's a whole model of community organizing, this is really nerdy, so sorry, but it's called the snowflake model. And it sort of builds out from a center leader and then they build out these additional leaders and those people go tell other people and and build this snowflake of people that are more powerful, quote unquote, then just any individual sort of in a room by themselves. And I think that the I've seen that happen with the podcast, like they are now ambassadors or leaders or whatever nodes of people that are gonna go out and talk about how to bump in nudge and how to think about timing and amount in ways that before they were at the Met the podcast, they would not have done that. And I think that like that is how that is what political organizers hoped for, and almost can never find but I think the difference between sort of a political message and what you have to offer is that it is concrete improvement in people's lives if they choose to apply it and so like it makes sense That continues to exponentially grow.
Scott Benner 1:30:03
Am I the center of the snowflake? Unfortunately, Yeah, unfortunately, yes, yeah. Hey, listen, you can't you can't pick who it ends up being. I know it's upsetting that it's me. But again
Anonymous Female Speaker 1:30:18
no question that Martin Luther King would ask.
Scott Benner 1:30:24
I was just trying to build a picture of what you're saying, because I think you swallowed the word snowflake when you first started it. So I was trying to make sure people understood. And then I did it in a way that was self effacing. Because, you know, I don't know. That's just how my brand brand, right? So. But no, I actually had three. It's funny, as you were finishing, I had three questions. And I was like, do I go with the funny one? Let's towards the end, I'll keep it light. Or, and then I thought, or do I go with the more serious one. I'm like, Oh, she might run out of time. And then I defaulted to stupid. But I really, it's amazing to hear you explain that. Because I've been learning this as I'm doing it. I had no idea about any of this. Like, it's very, like, I'm not lying to you. The first month I made this podcast 1300 times it was downloaded. So I don't know what that means. There were only four episodes. I mean, rough math, there's probably like 400 people listening maybe. And I mean, last month, I think it were like 350,000 downloads. So it's, I've had to grow along with it. And trust me, if I don't keep figuring it out and staying flexible the way I am, this thing would have died 1000 times already. Like, I know, it seems like you just build this thing. And it grows exponentially on its own. But it's not. It's like every time I look up, this is an entity that is different than the entity it was three months prior. And so I have to keep, like there was a time where I had to be online answering people's questions. And now people answered the questions for me. And so I can move my my focus to a different thing. There's a time when I had to take a lot of phone calls from people, because I couldn't reach them with the podcast yet. So I would reach them personally. And then they would go out and tell their people, it's simple to just say it's word of mouth. Because it is the podcast grows completely through word of mouth. But I have I was gonna say something that sounds so douchey. But like, I think you have to have like your finger on the pulse of what's happening. And you have to keep adjusting. And if you do it wrong, you have to be able to throw your hands up and say, Oh, they don't care. Like, we started animating the defining diabetes series for YouTube. And we got like three or four of them up and I'm like, oh, people don't care about this. And I contact the animator was like, Stop, like, stop. She's like, you don't want to finish? And I'm like, no, no, stop, it's over. It didn't work. Like right, like, I'm gonna try a different way to do it. Again, I have we have the content, I'll try it a different way. I'm like, but I want you to shift and start taking 32nd clips out of episodes and making them into animations. And we'll try them on different social media platforms instead. And if that doesn't work, I will abandon that in three seconds. And that's where companies are screwed. Because they make a decision. It's people's jobs. Nobody wants to say the thing that they had an idea about was bad. So they will follow a bad idea right to their death. And I'm just like, No, no, that's not working stop, we got to pivot. And
Anonymous Female Speaker 1:33:31
well, and what you're describing is like, also, what politicians have to do and are so bad at but like, the ability to focus on what actually matters. And what actually impacts lives like is what sorry to, like, take it to politics, but like that's what a good politician can do, and can stop, you know, a organization of hundreds of people and say we were doing this, we're shifting message because like the you're wrong about what actually matters and what's happening impact. And so, to that end, I think that as I it's funny that you bring up the animations because I saw those I was like, this feels odd. I don't know what Scott is doing with these. Exactly. And so it's funny, then that that plan that seems like it's shifting or changing and it doesn't doesn't surprise me that you are capable of recognizing that. And then moving back to like what is making traction because that is something that you have to be able to do in a political in any sort of movement. Like I keep making it political. It's
Scott Benner 1:34:34
a great example of that people don't really know what they want. And that's where leadership comes in. So people think they want the animations. They like the idea of it. I will show this to my kid and my kid will understand Pre-Bolus thing now because of this and even while they were saying I was like that's not right. Then enough people said it. I was like, Alright, well let's give them what they want. And so like I gave it to him, I was like, Oh, you don't want this. You think you want this? And I was like oh that's interesting. So now you know it's set up, and it's easy to do. So I'm like, well, let's just make little clips of it. And we'll see if we can make it work on tick tock or Instagram, like stories or stuff like that. And if it works great, and if it doesn't, then to me, that's what leadership is leadership is being able to say, you know, a, I know what it sounds trust me, if you're listening, you're gonna think it sounds horrible, but I probably have a better idea of what you need around diabetes than you do at this point. And it's
Anonymous Female Speaker 1:35:28
leadership and it's parenting, you want to date the bad boyfriend, but I can tell you right now, it's not gonna work
Scott Benner 1:35:36
out with the guy who has goo at the bottom of the Grand Canyon. And is like, here, this is the stuff I eat when I'm riding my bicycle and it will bring your blood sugar up. Yeah, no,
Anonymous Female Speaker 1:35:45
the only man who brought water sometimes. Exactly.
Scott Benner 1:35:49
Alright, we had a great time, didn't we? Yes, yes, we did. Can I call this episode if it pleases the court? Sure, can I? Because I don't know what else to call it right now. curses a lot. It dog. He got his called dog. No one will even get that that was an hour and a half ago. Right now people listening are like what is she talking about? So I was like, alright, real quick. It's Kamala Kamala Kamala, I keep saying it wrong. Kamala Harris, her husband's name is Doug. If you didn't hear that, an hour and a half ago, you weren't paying attention and you've insulted me. And that's the end of this. Alright, go learn how to be a lawyer. What kind of lawyer you're going to defend people or throw him in jail.
Anonymous Female Speaker 1:36:31
I'm obviously going to defend people. Good for you.
Scott Benner 1:36:35
Very nice. All right. You were terrific. You'll be back on one day. All right, you let me know. Alright. Take care.
Bye. Want to thank for coming on the show. I want to thank Omni pod for sponsoring the show. I want to thank Nick Contour Next One blood glucose meter for sponsoring this stuff for sponsoring the show. I don't know what happened just there. On the pod.com Ford slash juice box, go find out about the Omni pod five, or the Omni pod dash, whichever strikes your fancy. And of course, at contour next one.com Ford slash juice box, you can get my daughter's blood glucose meter. It's terrific. It just is contour next one.com forward slash juice box.
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#751 Bold Beginnings: School
Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 751 of the Juicebox Podcast.
Jenny Smith and I are back today with another episode of the bull beginning series and today Jenny and I are gonna talk about sending your type ones to school. While you're listening today, don't forget two things. One, Jenny works at integrated diabetes.com You can check her out and higher if you like, and to nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, in fewer than 10 minutes, you could go to T one D exchange.org. Forward slash juice box and fill out their survey. When you complete the survey. You've helped the podcast, you've helped people living with type one diabetes, and you may just have helped yourself T one D exchange.org. Forward slash juicebox. Hope you're enjoying the bowl beginning series. It's not done yet, there's more coming. If you've missed the earlier episodes, you don't even have to listen to them in order if you don't want to just go find them
this episode of The Juicebox Podcast is sponsored by touched by type one, please go learn about my favorite diabetes organization at touched by type one.org and find them on Facebook and Instagram while you're at it. This episode of the podcast is also sponsored by in pen from Medtronic diabetes, get yourself the insulin pen that gives you much of the functionality of an insulin pump in pen today.com. Jennifer, we're back. Yay. We're gonna do for the bowl beginning series today. Just the very simple headline here school. Now I was surprised. And then I thought about a little bit. There weren't a ton of questions about school. And then I thought oh, maybe that's because they didn't know the questions they ask. So I started adding more stuff to the list because it hit me pretty quickly. Okay, all right. So what ends up happening, if you hear most people's stories, they're diagnosed and school starts a week from now, it's always it's always that story, right? Like you don't get the whole summer to figure it out or something. It's like,
Jennifer Smith, CDE 2:43
it's over a break. Often, right? It's like somebody comes home for like Thanksgiving break or like the the winter holiday or something. And parents, especially for kids who have just gone to college, their parents are like, you don't look, do you feel okay? You know, and, and there's a new diagnosis. And now you get to go back to school two weeks later, let's figure it all.
Scott Benner 3:06
Anecdotally, I've always believed for like, a long time before I'm started making this podcast, just hearing people's stories and writing about diabetes, that people's lives are very like frenetic. And then when you hit a holiday or a vacation, or a long weekend, even you slow down enough to look up and go, there's something wrong with that kid. You know what I mean? Right? So
Jennifer Smith, CDE 3:30
right, well, and I think when kids go away, you also you miss the everyday visual that you usually have of them. So then when they do come back, and they look very different. I mean, not just like hair color, or how they're dressing now, there's a very visual, physical difference. And you can say, you didn't look like this. When I sent you to school in September.
Scott Benner 3:54
It's the same problem I have is when I'm walking through the house, I'm like, no one's gonna notice I've lost five pounds. So you just go up somebody's like, do you see it? Do you see the five and they're like, You look exactly the same. Thanks a lot.
Jennifer Smith, CDE 4:07
So take a beach vacation and then come back. And they'd be like, See, I do look different.
Scott Benner 4:13
So you know, just people say, Well, how do we transition? Back to school? Two big question. People want to understand about 504 plans, which I think are I always thought were widely understood. But then I I just realized I only know about them because of Hardin. And so we'll start but we'll start here. This person said it was crazy to me that after diagnosis, I was teaching my daughter's teacher about her care when it was so new to myself, and I didn't really know what I was doing. So I felt like I needed support and resources about transitioning. And she just said she said the schools can't really do much and they don't know anything. I either. And I will say from my own personal experience, the schools would try to how do i mean this? Sometimes principals are politicians, and it's their job to go, everything's fine, you're going to be fine. Your kid is going to be fine. Leave your kid with us. But they're not used to dealing with diabetes. It's always like, like, my, my daughter had a principal one time I swear to you, if you showed up at the front door, and the building was on fire, and people were jumping out the windows, she would have said, Go home, everything's fine. We've done this before. Oh, okay. She's just glad handing you right into, right into hell, you know, so, but when it's diabetes, specifically, what I find they like to say is, uh, we had a kid here last year with diabetes, or there's cars where there's two kids here. And it, it struck me finally, I don't know, the management style of these two kids at the level of their health, like, you know,
Jennifer Smith, CDE 5:58
absolutely. That's what I was gonna say. And it's a big one that a lot of when parents asked me, How do we approach this? What do we do about it, and that's one of the first things is to make sure that you have structured the needs to your child, like you said, Many schools have had experience or the nurse has been there long enough that they've had at least one student probably with, with type one diabetes. Again, the school might have a couple, but your child's plan is your child's plan, just because this other child doesn't seem to need accommodation or assistance with things. Their management style is very likely different than what you're doing with your child. And so they're very well we'll need to be some instruction and schools differ school to school system to system private versus public what they have in terms of resources, and allowances, some nurses travel between schools, and they're not always there. So it means establishing somebody that is always at the child's school, for the really young kids who may need somebody to check in with, versus the nurse that's always there. There are so many things that I've heard and seen that I mean, there are 1000s of ways that people address the needs. Yeah.
Scott Benner 7:19
And it does really begin with the scenario you're in. I mean, you just said it. But it's, you could be in a school where there's literally no nurse, and right, they're telling you like I don't know if you've ever met Mrs. You know, Smith, she works at the front desk, she's lovely. She'd be happy to give your kids a shot before from you're like, Okay, who she was, she answers the phone. And, you know, and she might end up being a godsend to you like, I have no idea. And but you have to you can't run in there and have all these expectations, and they don't have the infrastructure to handle it. Correct. Right. And you can't just force them. What I've learned dealing with schools, is that they're just people at work. Like you want to think of them as special somehow, because they're a teacher and etc. But they're people, they're at their job. They're not look, I mean, imagine if someone came to your job, Jenny, and they were like, Hey, we saw the things you do every day. That's great. Here's what else I'd like you to do. Right? This is Billy, don't let him die. You're like, Wait, hold on. I don't want that to be my responsibility. And that's what I would run into all the time. I had trouble finding people to be glucagon delegates, because they were like, wait, I'm like, Listen, if this should happen, if Arden has a seizure, you stick this thing in her butt and push the plunger, and you're going to say that's it. Yeah. And you're gonna save, you're gonna wait for 911 and hope and try to keep it from hitting your head on something like, You know what I mean? Like, nothing different than you would do if a kid needed an epi pen? Or? Oh, no, no, I don't want to be involved. The our school nurse had to search the school to find a handful of people who were willing to do what do it. Yeah. And I think,
Jennifer Smith, CDE 8:57
oh, sorry, go ahead.
Scott Benner 8:59
I didn't blame them.
Jennifer Smith, CDE 9:01
Right? Not at all. And, and you do. I think there are two definite, like mindsets that you have to have when you're coming up with a plan for your child one, a teacher is first a teacher, that is what they are, therefore, they have all of the other students as well. That doesn't mean that the needs of your child are not important. But you do have to understand that there's there's teaching that needs to happen. There's a purpose for going to school. So then establishing people that can be the check in person. Many times I've found that it's it's a little bit easier when schools have or your child's classroom has a designated like Teacher's Assistant. That's always there. The teacher has the instruction but has the chance to keep teaching where the TA is kind of there to help and assist behind and maybe more the one that you end up teaching more to because they've got a little bit more ability To help, right. But again, each school I think the biggest thing to go to first is whoever the head of the administration is, whether it's the principal or whatnot, what are your accommodations? Have you experienced this before? What What have you seen as protocols, this is what we like for our child. This is what we do. This is how we navigate and manage and have a plan or an idea already. And again, newly diagnosed, you may not know where to start. And that's where the community is very beneficial. And I've seen many, many plans posted, we've done this for our child, or we have these instructional like, you know, decision matrix that if this, then this, and it's very cut and dry and very easy to follow. Some teachers and people in the school are very willing to follow the CGM data, others don't want to do anything other than just respond to an alert message. So again, everything is very different. You kind of have to see what the school can accommodate. Yeah,
Scott Benner 10:59
we had a wonderful woman who was like, I have diabetes, I can help. And then we're talking to her and she had type two. And you know, she had never taken insulin before. And she was on Metformin, or something like that. And I was like, Oh, sure. Your skills are not going to translate here. But thank you very much. But we still, you know, she was willing to listen, and so there and learn people, and those are the people we taught, and I think that expectations are important. But it's always the seasol to me, you know, it's like, Well, I think my kids should have stable blood sugars at school. And then your school might say, Look, we're not comfortable bumping 150 blood sugar for your kid, like we're not going to do well, we'll treat over whatever the the orders from the doctor say. And that's, that's where I'll tell you, there's a simple sentence that you can put in your order from your doctors, if you can get your doctors to write this. Like, I don't you'll learn it any way you will. But basically, what it says is, these are the rules, unless the parents say otherwise. And then we and then we defer to the parents, and that way you can make to help make decisions. Yes, but you still might run into a nurse or somebody at the school is like, look, there's five kids that have diabetes, the school, we don't do this for any of them. And somehow they think that's a rule, then, you know, and so the way I always think about it is this. School is a long process, you're going to be in the same building. For a number of years, you might move to another building for a number of years, it's still the same system. These people work with each other, they know each other. You have to find a way to get what you want. Without being a pariah. You can't be the person that when you walk in the front door, they look up and they go oh, God, it's Jenny, you.
Jennifer Smith, CDE 12:48
Oh, right. Oh, yeah. Absolutely.
Unknown Speaker 12:52
With this Johnny, with a
Jennifer Smith, CDE 12:54
fake smile on your face, and like, Hi, how are you today? In the back of your mind, you're like, oh, no, hate
Scott Benner 13:01
me. Because I because I'm in here going, like, you know, I need you to correct a 120 blood sugar because I don't want my kids blood sugar to be that high. Right? I think that in the end. To break it down. You need, you need to have a plan that you can teach to someone else. Correct. If you're newly diagnosed, I think you need to explain to them, listen, we're just figuring this out. This whole thing is going to be kind of malleable for a little while. I'd appreciate it. If you could roll with this a little bit. I'm also figuring it out. I think you have to understand I don't want to say this. I don't mean this poorly. But I don't imagine that there are many nurses who are one minute at the premier children's hospital in the country working in the PICU that wake up one morning and go you know, I think I want to be a nurse at a middle school in my town. Like, these might be people towards the end of their career. Their training might be older, who knows what what the situation is right? But they're probably not Doctor House is what I'm getting at? Probably not Yeah, it's so they might have ideas in their head that are from a kid they helped three years ago, years ago, five years ago, 20 years ago, you have no idea. So you're, you're educating yourself. You're educating them along with them. But what I ended up figuring out, and then we'll go to some people's questions. I know I've said this in different places on the podcast, but it belongs here in this episode. For kindergarten, first second grade, Arden went to the nurse on a schedule. There was no there's no CGM at that point. So she was she was just going to nursing finger sticks shooting we had her like broke. I basically broke up the day in a way that I thought it seems unreasonable that she'll be she'll get low in my gaps of time, and I look back she never did get low. Oh, of course Ray once he was like eight, so her blood sugar's were pretty elevated to begin with
today's episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes in pen is an insulin pen that offers some of the functionality that you've come to expect from an insulin pump. I know you're thinking, Oh, Scott, please tell me more. Well, I will. Yes, the pen is a pen. But it also has an application that lives on your smart device. This app shows you your current glucose levels, meal history, dose history, and activity log glucose history, active insulin remaining a dosing calculator, and reports that you and your physician can use. While you're trying to decide what your next step is. Well, well, well, it's not just an insulin pen, now is in pen today.com. That's where you're gonna find out more information and get started. If you're ready to try the pen, just fill out the form at him pen today.com. Or do some more reading. There's actually some videos you could check out too, about the dosing calculator, the dose reminders, card counting support, and the digital logbook. So if you want to lighten your diabetes management load, but you're not ready for an insulin pump, in pen is probably right for you. In Penn today.com. In Penn also offers 24 hour Technical Support hands on product training, and online educational resources. And here's something else that you'll find it in Penn today.com. That is actually very exciting. Now this offer is for people with commercial insurance and terms and conditions do apply. But you may pay as little as $35 for the in pen. And that's because Medtronic diabetes does not want costs to be a roadblock to you getting the therapy you need within pen $35. How crazy is that? In pen today.com in Panama requires a prescription and settings from your health care provider, you must use proper settings and follow the instructions as directed, where you could experience high or low glucose levels. For more safety information where to get started today, you can go to in pen today.com.
Jennifer Smith, CDE 17:27
But you started I think what you're saying here is that even a couple years in, you were really going off of not only technology that you had, but also a baseline that you could teach. That worked easily because it was a structured schedule. And for the newly diagnosed going into a school type setting, I think that's the best that you can really start with is these are the basics that need to be done to keep my child safe. And to allow learning because that's obviously the reason you're sending your kid there to is is to learn. Yeah, and if they're getting interrupted all the time, because of of alerts and alarms and things that are too aggressive for this point in diagnosis. It's not helping anybody
Scott Benner 18:16
well, and and what ended up happening was I basically spent the time from an origin was to till she was five, figuring out an ebb and flow to the day where she wouldn't get low. And then I sent her to kindergarten with that. The school was resistant about some of the things I wanted. And they didn't help her with a couple of things I'll bring up in a second. It happened, we had it set up where she tested, tested, tested, then at lunchtime or snack time even she'd go to the nurse's office, they would test her call me Tell me the number. And I would tell them how much insulin to use. And then they would send her back on her way. And she'd come back and test again. And this would happen before it would happen before snack recess at lunch where she'd get tested. And one day, my timer went off for for recess, and no one called me. So we did a couple of minutes. And I waited a couple more. And I have to tell you, I mean looking back on it. It was I was in like abject horror at that point. It just like we haven't total panic mode is going on, you know, is she is she having a problem? And they're helping her is like, I don't know. So finally I just call the school and I was like, Hey, Scott, you didn't call me about Arden. And the woman. The nurse said, Oh my god, Arden and she slammed down the phone and she was gone. And I was like, and you're like okay, what uh, what is that mean? So I sat there for a second and I thought, well, now she knows I know. And she knows she seems to know something to our way. Right? And she calls back and she goes Hi Arden's with me. She's fine. And I'm like, okay, And then they test her. So a little boy came in with a heart issue and had to be put on a monitor. And they just forgot Arden. And Arden went right from school. And because the nurse didn't come together, she was in kindergarten, she went right out on the playground. So they chant, they plucked Arden with a 50 blood sugar off the top of the monkey bars, and brought her inside. And I then went to the school and said, Look, this is what I was telling you about. Like, we can't just hope that the nice person in the nurse's office remembers to save our son's life every day at 1015. Like, you know, like, we need to and then they were more willing to listen to the ideas that I had. Right. When Arden left second grade, maybe one of the luckiest things that ever happened to her was that her teacher and teachers will know this phrase, I don't know what it is, but her teacher wanted to move from second grade to third grade with the kids. Okay, so she did that. She taught the kids in second grade, went to third grade and taught the same group of kids.
Jennifer Smith, CDE 20:59
That's a nice school that does that was very cool. And a frequent thing. By
Scott Benner 21:03
the way, that person that teacher was that Arden's graduation, like she showed up at her high school graduation and went around and found every one of those kids and took a picture with them. It was very, very nice. But what ended up happening for Arden was, we had we had fresh eyes that also knew the past. And Arden was struggling in math. So the woman calls me one day. And she says, I know why are you struggling with math.
Jennifer Smith, CDE 21:30
And I said, why she where she is with her blood sugar at that time of day
Scott Benner 21:34
when we sent her to the nurse. So the math instructor would start five minutes into it every day, Arden would get up and quietly leave the room and go to the nurse's office, come back five, seven minutes later missed the instruction, and then put her head down and try to do the work. Yeah, no one ever noticed. It just it just because it was such a part of the day. And it took her a couple of years to rebound and catch up from that because they were still moving forward. She had to learn the back stuff. And it was that moment. I was like, Okay, we're done. And that's if you go to episode for the podcast, I talked about how I figured out how to text diabetes. And Martin has never been to the nurse's office since that that moment. So the last day of like the last day of second grade. Because she contacted us over the summer and told me that.
Jennifer Smith, CDE 22:21
And that's something to navigate to, you know, because some school systems again, with these plans, you really have to think about how they're written. Because if they're not written specific to what you have worked out and is safe with your child to do texting, diabetes, not having to go to the nurse, the nurse is there in case of need or somebody else. But otherwise, it's just navigated between you and your child. I would say that that's, that's less common. And it's it's kind of a special school or a special written plan that really worked out that way. I've seen much more the, the child has to check in with somebody. And even if your child is very able to do majority of what they're doing on their own, because they do it in the summer, on their own or on weekends or whatever. You have to kind of almost prove that they can do that. Before they'll let you not check in with someone. Yeah,
Scott Benner 23:21
no, I mean, I very specifically on my end, I don't I didn't you know, I was a stay at home parent. So I wasn't at a job. But I could make that part of my day. I mean, if right. I don't know how it would work for other people. But it it definitely. It definitely freed her up to move around the building better. It actually helped us fix problems more quickly, right? Like she didn't have to go to the nurse to find out that she was low and get something like we would do it in the rain. It's how she started bolusing like she would Bolus in class before going to lunch stuff like that. It's not going to work for everybody, for sure. But it was the way I found to get around this stuff that just kept coming up, you know? Yep.
Jennifer Smith, CDE 24:05
And that's it. I mean, that's important. Absolutely. I've even seen many comments from parents who have problems with any accommodation at all. My my teachers won't do that. They don't have time to do that. Your child isn't special. They don't need this kind of accommodation. I mean, I've seen the total opposite in terms of assistance, which obviously is not what you want to walk into.
Scott Benner 24:31
Why what I would do is every year in the summertime, I'd go and meet with Ardens teacher, and I would explain diabetes to them. Because they're not going to know right? And so you say things like you don't want their blood sugar to get low. They don't know what that means. Yeah, like a great like, why? Because when I'm 60 I don't feel well and when I'm 50 I'm dizzy but do they know like your brain will shut off when you're 20 like I don't know what they know and you will also want to be able to tell them listen And this is a real concern. And we need to guard against this. Having said that, I don't imagine it's going to happen. But then again, correct, yeah, a light doesn't go off on your forehead before you're going to your blood sugar goes to 35. Like, it's just no, nobody tells you ahead of time, you know,
Jennifer Smith, CDE 25:17
well, and one thing that does hit from a teacher level, obviously, that's their job is to instruct, right? One thing that really sort of comes across in terms of the importance of glucose. And what their job is supposed to be is giving some baseline information about blood sugar level, and learning ability. blood sugars here and here outside of this range, are going to mean that my child may be fidgety may not be paying attention may be causing problems, when it's not, it's not what they want to be doing. It's because their blood sugar isn't right. Thus, my kid isn't going to be learning what you're trying to teach them, it's going to be disruptive. So if you help us to keep their blood sugar in this range, you can continue instructing better, my child will keep learning better. And it's a win win. Right? That's a point that often makes sense from the teacher angle is the association between learning ability, attention ability, and glucose levels.
Scott Benner 26:24
And I, I shone a light on security and, and health and I told them about long term health too. I said, Yes, we because they're like, Well, why don't we just leave our blood sugar higher? And I said, because, you know, there's, there's damage that comes from that, to that it's more long term. I think the way I put it in one meeting one time is I said, Listen, if you want to keep Arden's blood sugar at 200, all day, why don't I just pull her out of school, send her to an island and let her live her life? You know, it's like, because at least she'll be healthy. Like, maybe she won't have an education, she won't know how to, like,
Jennifer Smith, CDE 27:00
work or help herself or know how to pick coconuts. But she'll be
Scott Benner 27:03
alive. And you know, like that. I'm like, That's not okay, either. And they're like, Well, I don't understand why this kid. We don't we don't help this kid until their blood sugar gets to 200. I was like, well, that's their decision, like, No, it's not okay. And you're right, you have to, you kind of have to be both sides of the conversation, you need to get what you need, without upsetting anyone. And you have to be helping them. It's in negotiation, that you're the only one who cares how it goes. I don't know if that makes sense or not. Right. So you almost have to defend the person who you're negotiating with the same time I used to put, every year I would find something in Arden's 504 plan that we didn't need any more. And I would give it away at the 504 meeting to make them feel better. I'd be like, no need to do this anymore. Like you know, you're doing this, you don't need to let's make this easier for you and get rid of this. And then that we'd leave the room and they'd be like, Oh, good. I got. And, and, and meanwhile, you were never really adding things to 504 plans, you were kind of just manipulating them to make them work for the age range, like all the sudden, like standardized tests, or the technology
Jennifer Smith, CDE 28:14
that you now have. Right, right, right, God, yeah. I mean, as that changes there, and especially with the technology that's changing the way that it is right now, with all of the FDA approved products, there is less attention that a teacher or a nurse may need to give, it doesn't mean that they don't need to know how to help in the case that it comes up. But this technology can certainly be something to educate them. While their system is going to do this, it should be catching these kinds of things, they still need to touch base, or they still need to check in with you about this. So again, those might be the touch points, kind of like you're saying that you don't have to really do as much. They got something here helping but we still need this in this in this.
Scott Benner 29:01
In the end, you can set up a 504 plan, which is going to give you some legal backing, like once it's in the 504 plan, they have to do it. But there are you do need to understand private schools don't need to accept kids no matter what. Right.
Jennifer Smith, CDE 29:20
That? That's an interesting question. I mean, private schools typically have different rules than public schools. And if they don't have accommodations, it often falls to the parent to find the accommodation so that their child can stay in that private environment.
Scott Benner 29:41
And preschools fall into that heading to Yes, it's might be hard difficult to find a preschool who's willing to do this for you. Right? Yeah. Yeah, it is very interesting. Okay. So some of the things that I've run into no matter what you're gonna Get your kids schedule, and they're gonna have gym right before or after lunch or lunch and you're gonna be like,
Jennifer Smith, CDE 30:08
a lot of fun, I've got a couple little kids who got, they've got recess, then they've got snack time. And then they go to gym class. That's fine, yay,
Scott Benner 30:20
write it off, and then pour it in, then put insolate in, and then have him run some more. Yes,
Jennifer Smith, CDE 30:26
that's fun. And it's not every day. So you can't even accommodate like an everyday like, pattern or something. It's like Tuesdays and Friday. And this is what
Scott Benner 30:36
I know, I actually did have in one of Ardennes accommodations that they couldn't put activity right next to lunch. But it took me a couple of years to get them to agree to that. And so and it was hard. I mean, it was hard to get them to do that, to be perfectly honest, that was every year,
Jennifer Smith, CDE 30:54
because it's a manipulation of what the schedule is going to look like for everybody, then it doesn't just affect her, every kid in her class is going to also not be able to have
Scott Benner 31:04
or you have to put a class where she doesn't belong to make it work, etc. And in the end, I never made them do anything. We always did come to an agreement along the way, because I was never looking to be like I I mean, I don't know if I was or not. But I was trying very hard not to be like, Oh God, here he comes, you know, like, I don't want to talk to that guy hide. When Arden went into high school, and the nurse said, I actually brought along the nursing staff. So I learned this in elementary, from elementary school to middle school, I brought the nursing staff from the elementary school to my first meeting with the nursing staff from the middle school, that's a great idea. Because I was like, I'm gonna say I do a bunch of stuff, it's gonna sound crazy to you. And this person right here knows how it works. And so that made the next person. So when I got to the high school, I did it. But the nurse was just like, well, that's not how I do it here. And she pushed back and she had like a big personality. And she goes, I like having a relationship with all my type one students. And I said, Well, that sounds lovely. But in my world, I would love it if my daughter didn't know you. Right? That's what we're shooting for. Okay? Just like every other kid in the school does not want to end up in the nurse's office. I don't, I'm sure you're wonderful. I bet you make it fun for the type ones. But that's not our goal here. So she pushed, she pushed back and pushed back and I was like, listen, it's not what we're doing. Like, it's not gonna happen, like, we're gonna bring some supplies. And if something gets completely upside down, or Arden has to swap a pump or something like that, you'll see her, right. And that's how it ended up going. And she was okay with that after a while, you know, but it took way to talk about it. They had to they had to wait and take time. Nobody ever yelled at each other. That's the other thing. If you're yelling, it's over. Like don't don't lose your don't lose yourself there. I think. You know, as we're talking about this, I wonder if I couldn't create a place online where people can upload their 504
Jennifer Smith, CDE 33:03
plans. That would be I think, a really great resource. I mean, kind of like, kind of like you have a place online for people to look for good endos, or good doctors or good educators? That would be a really great resource.
Scott Benner 33:18
Yeah, I wonder if we couldn't just turn them into PDFs and put them so people could look at them can look at them. Because
Jennifer Smith, CDE 33:23
you I would even say maybe categorize them, like, toddler age, like almost preschool, you know, grade school, middle school, high school, so that as you filter through them, you can go age appropriate. Yeah. For what your accommodation might look like, or how it might change. Like you said, you took your nurse along to prove to the next entry level of kind of school age, this is what work this is what we did, it is just fine. You know, please accommodate.
Scott Benner 33:51
I'm thinking that because like I'm looking at a question here, like, what do I do if my kid wants to skip lunch at school? Like, I don't know how to answer that question. Like, yeah, I mean, I do. But it's, it's not something you're going to put in a 504 plan or something like that in so there's going to be more, there's going to be more scenarios that are really going to be on you to kind of like dance with then just hoping that there'll be in this document and that fixes everything.
Jennifer Smith, CDE 34:16
Right? The document really should be very specific needs, right? Not what ifs. In right in what if my kid doesn't want his snack in the morning or doesn't want the snack that was packed and prefers the cupcake that came in as the birthday treat? Yeah, what if what?
Scott Benner 34:33
Yeah, no, the 504 plan can't incorporate everything that your anxiety might put into your head on from day to day like it's like Ardens was stuff like Arden has a bag with her. It'll have these things in it. If there is an emergency in the school, you need to make sure that bag goes with Arden and that was when she was younger. Right? And then as she got older, the language changed slightly to like you can't restrict Arden from taking the bag, you know, once it was on her to remember the bag, right? You know if Arden's load, do this, then do this then call 911, after you've done that call the parents or we had stuff like you have to get the school bus driver trained to understand basic, like stuff like that. Yeah, it wasn't like if Arden decides at 3pm that she wants to x, then you have to, like you can't. I know, that's what people want. But this documents not going to be. It's not everything, you know, it's just it's, it's the stuff.
Jennifer Smith, CDE 35:35
And if anything, that kind of detail may make it very confusing as to the very, very real and important things that really should be being done every single day. The same way.
Scott Benner 35:47
Yeah, right. But little things like as Arden got older, she would write her blood sugar on the top of a test before she started taking it. So she'd look at her CGM and write her blood sugar on the top. And that way, if the test came back, crazy, wonky, different than you expect her skills to be, we could say, hey, look, her blood sugar was high, maybe you could let her take it again. Right we've ever
Jennifer Smith, CDE 36:09
done with a CGM, you could have followed what happened to the blood sugar, you know, maybe blood sugar started out fine at 101. But then in test taking, she's not really paying attention. And it really starts to dip there too. You can follow that information to be able to go back and say, you know, could we potentially do you do this?
Scott Benner 36:25
It's funny. So if I, if I started this episode over and decided to make it two minutes long, I would say you're in a relationship with these people. Now. It needs to be harmonious. There might be times where you have to bite your tongue. You don't want to get into a fight with anybody. It's a long process. You might be with them for 12 years. And there are going to be times they're gonna say things that you're like, that's not right. But you got to understand their perspective, too. And make it work. Yeah, it's like being married. Except I'm just gonna say without the sex. But you know, if you've been married, I've been married.
Jennifer Smith, CDE 37:05
Yeah, there's give and take. Yes, exactly.
Scott Benner 37:07
You give a lot and somebody takes a lot. If you're lucky, your kid gets his lunch on time. Okay, all right, Jenny. Well, thank you very much, of course.
A huge thank you to Jenny Smith for being here with me again today. And I'd like to remind you that you can hire Jenny integrated diabetes.com. I'd also like to thank Ian pen from Medtronic diabetes. If you're looking for an insulin pen that does more, you're looking for the in pen in pen today.com. In a few moments, I'll tell you a lot about the show. But one of the things I'll tell you is how to find the series. So if you've just stumbled upon this one, and you'd like to find the rest, there's a way to do that. I'll be telling you about it in just a second.
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Test your knowledge of episode 751
1. Why is early diagnosis and treatment of type 1 diabetes important?
2. What are the common symptoms of type 1 diabetes?
3. What is the role of insulin therapy in managing diabetes?
4. Why is carbohydrate counting important in diabetes management?
5. How should blood sugar levels be managed during exercise?
6. How can stress and emotional health affect diabetes management?
7. What are the benefits of having a diabetes care team?
8. Why is it important to stay informed about new research and advancements in diabetes care?
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