Scott Benner 6/13/23 Scott Benner 6/13/23

#927 Omnipod 5 is a Great Teammate

Carries child has type 1 diabetes and she is here to talk about Omnipod 5.

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.

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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 927 of the Juicebox Podcast.

Today I'm going to be speaking with Carrie. She's the mother of a child with type one diabetes, who is using Omni pod five and we're going to talk all about it. 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 health care plan, or becoming bold with insulin. Are you looking for super comfy sheets, joggers and towels, check out cozy earth.com and use the offer code juice box at checkout to save 35% off your entire order. If you want to take the same green drink that I do every morning, ag one from athletic greens, use my link athletic greens.com forward slash juice box you will get five free travel packs and a year supply of vitamin D with your first order. And don't forget if you're looking for those diabetes pro tip episodes, they begin at episode 210 In your podcast player, if you're having trouble finding them, check out juicebox podcast.com or the feature tab in the private Facebook group Juicebox Podcast type one diabetes

this show is sponsored today by the glucagon that my daughter carries G voc hypo Penn Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is sponsored today by better help better help is the world's largest therapy service and is 100% online. With better help you can tap into a network of over 25,000 licensed and experienced therapist who can help you with a wide range of issues. Better help.com forward slash juicebox. To get started, you just answer a few questions about your needs and preferences in therapy that way better help can match you with the right therapist from their network. And when you use my link, you'll save 10% On your first month of therapy.

Carrie 2:19
My name is Carrie. I'm the mother of a six year old type one boy named Danny.

Scott Benner 2:26
Danny is six. How long has he had type one.

Carrie 2:30
We just had our one year on October 23 diagnosis five he was diagnosed when he was five.

Scott Benner 2:36
And what I what I will do here to try to get around my poor pronunciation is I write down the word carry with a why like carry the weight

Carrie 2:46
as opposed to carry Fisher

Scott Benner 2:49
or no as opposed to like my I might hit the are too hard. And say carry if I'm not careful. You just I just looked at my brain doesn't work around words that well. So this is what I have to do. are you pressuring me already? I don't I don't do this. It's Friday, you know? Okay, so tell me a little bit about Danny's diagnosis. He's a year ago. Do you have any other type one in your family autoimmune? Was there any reason to think this was gonna happen?

Carrie 3:24
Me and stuff on my husband's side not with my husband.

Scott Benner 3:29
There was I thought the result pregnant pause but you were just gone for a second. So can you start off?

Carrie 3:35
Sure. So no diabetes in our family. My husband's side has some non type one autoimmune stuff. Hashimotos celiacs lupus, but nothing. I mean, this was not on our radar, like not even a little bit. Right. So this

Scott Benner 3:54
is your husband's fault. I got all my husband's fault. Yeah. What else does he do wrong?

Carrie 4:01
We're gonna have to do a whole nother hour on that.

Scott Benner 4:04
All right, well, it's not let's pin the poor guy down now. So this is not something you're not sitting around thinking like, Oh, everybody in our family gets type one. So this is definitely gonna happen. So then how do you figure it out?

Carrie 4:17
So we noticed he was paying a lot. And we noticed it mostly at night. We both work full time. He's at school all day. We didn't have a lot of observational touchpoints during the day. But at night it was just he was soaking through the bed kind of multiple times a night but he was he was otherwise totally normal, fine and healthy. Because it was the end of October. We know people on Facebook and such that have type one in their families and they were raising money for JDRF which the walk in our area happens at the at the end of October and I had donated and sort of the social media algorithms. Were putting diabetes stuff on my phone as I was like scrolling through. And about five days after we noticed he was peeing a lot. I texted my husband and I was like, you don't think he's diabetic or something, do you? Because Facebook does, right? Because I've now diagnosed him. And my husband texted back, and he's like, I don't know, is, is peeing a diabetic thing. And I was like, well, apparently. And it kind of got, we're not once we focused on it, we got increasingly more concerned. And the next day, I reached out to one of these acquaintances that has a has a son with type one, and asked her if she would test his blood sugar.

Scott Benner 5:46
Well, that's how you figure it out. So the algorithm, the Facebook algorithm finally did something, right. Correct. It just kept so so seriously, like, the the idea of diabetes just kind of get kept being foisted on you by an algorithm? And that, that that really made you think about it.

Carrie 6:03
Yeah, I mean, it was late at night, he was in the other room changing Danny sheets and getting him back to bed for like, you know, what felt like the millionth time that we? And also I should say, I mean, we have, we have three little boys. So there's lots of reasons that one of my kids could be peeing a lot or peeing a lot at night. I mean, the weather was changing, it was getting cold, or, you know, you sort of rationalize it. 100 different ways.

Scott Benner 6:27
You know, how people pee the bed when it's cold out? Little boys? Do they really? Yeah.

Carrie 6:37
Like when, like when the air conditioning is on, like, there's definitely an uptick in our house and like nighttime accidents, for sure. I'm gonna

Scott Benner 6:44
say that's because those kids don't want to get out of bed and get cold in the bathroom. And they're just, you know, it'd be easier. This piece right here. Yeah.

Carrie 6:54
Yeah. So, so we, we suspected it, honestly, I thought it was going to be like, fingerprick rule it out. I didn't seriously think he had diabetes. They, you know, our friend tested him on there. They have a contour. They tested him. And they saw the reading as high which of course, I didn't know what that meant. And they just looked at me and they said, You need to go to the emergency room tonight. And I said, Well, you know, our doctors open on Sunday, let's just be you know, I'm sure it's okay. He seems fine. And they were like, no, no, now, like, leave your other children and go

Scott Benner 7:33
abandoned the other kids. Just go? Did they explain DK to you.

Carrie 7:39
So she did not explain DK to me. She said to me, when you get to the emergency room, tell them you think he's in DKA. And you will cut the line.

Scott Benner 7:48
Okay. And that works? Well, finally, just the worst way to get the front of the line you don't want to be in? Alright. Can I ask for a second? Have you and your friend never gone back over that moment? Was it hard for them to tell you that?

Carrie 8:04
Um, we haven't talked about I mean, that at the time, she was, you know, the mother of another kid in the class of one of my other kids, she we didn't know each other. Well, we've become obviously much closer over the year she has given us you know, some some wonderful advice and things like that. But we we haven't really talked about it other than just sort of how crazy the world works sometimes. Right that, you know, she she had been posting I donated we we connected like I thought to call her it all just sort of, you know, the universe does funny things sometimes. So

Scott Benner 8:44
sucks. Doesn't it be an adult? It's all I could think when you were talking about texting with your husband. Like, none of us are like 20 years old at a concert and thinking like, you know what'll probably happen one day, I'll probably be texting a man I haven't met yet who will be in the other room of my house, telling him how one of our children probably has diabetes. It sucks like that? Yeah. Yes.

Carrie 9:05
Being an adult sucks. Being an adult with a kid who has type one has sucked more than I thought being an adult could be.

Scott Benner 9:14
Well, I agree. I'm right there with you. Okay, so you get to the hospital D cut the line.

Carrie 9:21
We went in pretty quickly. You know, my son at that point, was absolutely hysterical. I mean, from his perspective, he was basically pulled off a little league field and someone stuck a needle in his finger and now we're at the hospital and he was screaming his head off. Screaming at the nurses, you're not going to take my blood, you're not taking my blood and the nurse looked at me she's like, you know, we're gonna take his blood, right? I was like, I know it's okay. And so they they fingerprint him in the ER and it was like 663 or something like that. And right then we were, you know, moved into the back room. Men and kind of off to the races with a diagnosis.

Scott Benner 10:03
What position does he play? He's six. Oh, they just shut him out on the field

Carrie 10:09
right there like right side or left side close or far. Do you want to

Scott Benner 10:13
run far this time this evening? Or do you want to run a little bit? All right,

Carrie 10:16
I think I think they have like pitchers helpers, the position that everyone wants to be

Scott Benner 10:21
standing next to the coach. Yeah, exactly. That's what kids want to do. They want to be the pitchers helper.

Carrie 10:27
Well, because that's like the kids can't really hit the ball. So straight up the middle kind of ball

Scott Benner 10:33
goes. Yeah. So your kids suck. i My kids were great when they were just kidding. That's exactly what happens to it's like the was T

Carrie 10:44
ball. Like they weren't even there wasn't even any velocity on the pitch to help them.

Scott Benner 10:49
I understand. I'm kidding. No, that's the at that age. That's the only position where you get the feel the ball. Yep, yeah, it's pretty. And then everybody else who stands out there going, is that

Carrie 11:00
baseball really fun, really exciting.

Scott Benner 11:02
I watched I'll never I don't think I'll ever forget. I don't know the kid. And I have no idea what his name is, or you know where he is now. But around that, like eight year old time, was the time when they would give the young kids one nighttime game at our little league field so that they could come at night and play under the lights and everything. And it brought out into the middle of summer. And it brought out these weird moths. I don't know. Like they were just big and weird. And one landed in right field. And the kid just walked over to it. And He squatted down. I mean, the game is happening. You understand? You know, it's it's not like in between the batter or anything. He squats down. He's poking at it. He picks it up. He's got it on his hand. He's got it up in his hand. Now he's examining it in his face. And I'm like, I don't like this kid is long for baseball, you know? And sure enough, he was he left pretty quickly after that. But I mean, that was that kind of encapsulates what happens when the ball can't go past the pitcher's mound. Everybody else is just in a coma. So it's fun when they get bigger. Do you think we'll keep playing?

Carrie 12:06
He's pretty all in on soccer. love soccer. That's good at soccer. I'm not sure he has the attention span for baseball, but but we'll see. You never know. He's only six I don't have to plan is his professional sports career just yet.

Scott Benner 12:21
I am going to give you one great piece of advice. Okay. We'll move past this. This is for everyone. Listen, it's the best piece of advice you're ever gonna get about sports and kids. Hope that your children are good enough to play and have fun, but not good enough to dream about more. I'm telling you, that's the best advice you're ever gonna get. Right there just like that. Yes, because none of your kids are going to end up being 662 140 pounds and stay athletic. Like that's a random thing that happens to a random person. And you can be really good at something and, and still not fit the mold. And it's a lot of time and effort to put into something. So anyway, that's my best advice. It was given to me by a friend of mine, whose son was pitching at a D one school. And he said, my biggest regret was that he was this good. He's like, I wish he was just a little less than this. He's like, because he would have, he would have played in high school, he would have went to some nice little college, he would have played baseball, he would have graduated, he would have known it was over and that was it instead. Here he is, you know, 21 years old can throw 94 miles an hour and nobody cares. Right? Yeah. So anyway, there's my advice, and it bummed me all the hell out. But it'll save you a ton of money. If you listen to me right now get the kid at chess lesson. You know, and I don't know, some home weights. That's it. That's your sport. Go do something else with your time. Plus, I have a permanent farmer's tan, which I don't think I'm ever going to get rid of

Carrie 13:57
and being out watching your senpai right.

Scott Benner 14:00
Plus, it's the only thing I can imagine. Like, Carrie, I had somebody asked me recently, what I wanted to do in retirement, which was off putting because I'm 50 But I still you know, we're trying to financially plan. So I'm like, okay, and all I could think was watch Coldplay baseball. I couldn't think of anything else. Like, what else do you want to what do you want to do in your retirement? And it just popped into my head? I'm like, I want to watch the whole play baseball. And then I was like, and the guy said, Do you want to travel? And I'm like, I'm like, we'll be there playing

Carrie 14:34
baseball. Stadium to stadium. What kind of trouble? We're talking and I don't

Scott Benner 14:38
want it to be like some sad adult League. Where you don't I mean, like, I'm like, I wanted to be playing baseball. Can that happen? The guys like, I don't know, man. TFA I was like, Alright, I was like, just save as much money as you can. We'll figure it out later. I'm sure what's gonna happen is I'm gonna save as much money as I can, and then die. I'd give it to somebody else. That's about how I imagined This is gonna go. Alright, I'm sorry. Anyway, you are in the hospital, your kid is yelling at people. How long do you have staying in the hospital? What do you leave with as far as understanding?

Carrie 15:12
Okay, so he thankfully it was not in decay. We caught it sort of very early, I guess on the spectrum of how these things go his agency what wasn't crazy. So we, we were admitted for a few days, you know, sort of whatever the standard is one of the first pieces of advice besides tell them you think he's in DK to cut the line that our friend gave us was refused to leave the hospital without a Dexcom. And I didn't even know what a Dexcom was. I like Googled it, watch the little video and told the nurse practitioner that was like, a sign to deal with us that I wasn't leaving the hospital without a Dexcom. And she was like, Well, I can't, I can't like I'm not allowed to show you how to do it. And we really want people to learn the old fashioned way, and blah, blah, blah. And I'm like, Okay, I'm not leaving without a Dexcom. So we got the Dexcom in the hospital, thankfully, and, and the truth is, I like can't imagine having gone home without it.

Scott Benner 16:14
How did you make that happen? If they were like, we don't do it that way.

Carrie 16:18
Um, I tried to find a hook where I could convince them that they had to do it. And my son goes to a small Country Day School that doesn't have a school nurse. And so I basically said, I can't send it back to school without the ability to remotely monitor him constantly.

Scott Benner 16:38
Very smart. That word, they were like, Oh, all right. Isn't that funny?

Carrie 16:43
She was like, Okay, well, I'll write the script, but I'm not going to show you how to use it. I was like, Okay, well, that's even dumber than not writing. Right? Like, okay, I'm just gonna give it to you. And like, so I watched some YouTube videos, and we put it on him. And yeah, yeah,

Scott Benner 16:58
I mean, I don't think I'm supposed to say this about any of the products that are advertisers on the show. But this stuff's not that hard to figure out. Right? Yeah. You know, I read, the YouTube video works great. You could call me I could have explained it to you in three minutes, you could have called your friend, they could have hadn't found

Carrie 17:14
you yet. I found you shortly after, but you were not yet in my life. Oh,

Scott Benner 17:18
when does that happen?

Carrie 17:20
I think a week later, a week after we got out of the hospital, you know, I was doing what they sort of tell you to do, which is haul their helpline and talk to a different doctor than the one that's been dealing with you. And talk to them about changes and stuff. And they lost me at post bolusing. To be honest, it didn't take me that long to figure out that, that takes insulin a little while to work. And if you're constantly dosing at the end of meals, they that you're gonna, you're gonna have a problem. And so I asked them, I said, Well, why are we dosing him after the meals? Why aren't we dosing him before he eats? And they're like, Oh, well, like that comes later. And I was like, Okay, you're managing me. So I need to stop talking to you and do some Google searches and try to figure this out on my own. And that's what I did.

Scott Benner 18:13
Yeah. So you, you felt what was happening very quickly, that they were feeding eggs they were being spoon feeding you information slow. Yeah, yeah. And you were like, Alright, I want to get to the other part. Now.

Carrie 18:25
Let's fast forward, the management, you know, the managing me and let's talk about how I'm actually going to, like, manage my child,

Scott Benner 18:31
what was the like, what was the post meal spike looking like?

Carrie 18:38
Read hundreds, before we started Pre-Bolus, saying, I mean, pretty significant. You know, I had some concern when we started Pre-Bolus saying he's six, what if he doesn't eat all that we think he's gonna eat and stuff. But I got pretty comfortable that there wasn't a problem that juicebox couldn't fix. And that it was worth it. And so, I mean, we haven't seen barring pump failures and things like sort of just sort of technology happens. We haven't we haven't seen numbers like that in a very long time.

Scott Benner 19:13
Yeah. I sometimes look at the podcast as a whole. And I think it's just really a message about common sense around like for ideas. And I and I wish there are days I wish I could figure out a way to just say it one time, in 20 seconds, and make one episode just leave it up. You don't I mean, and and I feel like I tried to say it sometimes like that. I'm like, Look, here's what it's about. It's about timing and amount. It's about understanding the impact of the food like that kind of stuff. I know that you need the bigger conversations to understand it and everything. But it mean when that's the truth, that they're really just these couple of things you have to do to manage a meal and people are busy telling you to do it, opposite of how it works, which leads You just just I don't want to start you down this path of like, it's like destruction, it's like, we're never going to figure this out, because you've put me on the wrong path.

Carrie 20:10
Right? And it changes your expectations. I mean, you've talked about expectations in a slightly different context. But if you if you start to think like, Okay, well, I'm seeing a spike to 300, and like, the medical team is okay with that, then you start to think that that's actually where your child should be or where you should be aiming to get your child.

Scott Benner 20:33
And it's not carry, it's not the process. That's the problem. Like I understand the the slow start. And let's give you some of the information now and some of the information later, like all that makes sense to me. The problem is that during that, during that time, someone forgets to explain to you, this isn't how it's always going to be. And here are our expectations moving forward. For now, it's going to look like this, but in the, you know, blah, blah, blah, or later, we're going to want it to be this way. And it's exactly what you're saying. It's, I remember it as clear as day from an episode, like from the first year when this woman said to me, they gave me a range up to 200. And I kept him here, but then it started to go up. And I thought, Well, okay, that's fine. It's only 130. And then it was 140. And I thought, well, that's fine. It's only 140. I mean, that's only 40 points higher than 100. And before you knew it, she was at 200. Gun. Well, 200 is only 100 points higher than 150 or 50 points higher than 150. And I was fine at 150. And she just kept talking herself into the numbers being higher being okay. And I thought that's how people's minds work. Like that's how people gain weight. That's how people you know, do hard drugs, like I'll just do a little coke after work. And then then you don't I mean, like, it's like that kind of thing. Like, everyone thinks our brains are. I don't know why. But they're wired like that. And so the process coming out of a hospital, most hospitals with diabetes is just putting you in a bad situation where eventually you're going to be like, I'm just doing heroin. It's fine. You don't eat meat like that really is. I don't, I don't snort it. Like you don't I mean? Like, like, at least I'm not doing this. And then the next thing you know, your kids blood sugar's to 300 after every meal and you're like, Well, this is what it does. It's okay. The guy said it was alright. So I hear you are Well, I'm glad it hit you that way. You find the podcast, I'm talking in your ear, your blah blah, blah. Now we're gonna fast forward a little bit like through diabetes stuff too. He gets a pump

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Carrie 24:11
he gets a pump so we switched endos pretty quickly after I found the podcast and found an endo that was sort of much more the technology is there let's use it let's get it in your hands there's no reason to you know quote do it the old fashioned way for some ridiculous amount of time. We had him on a pump we started it like right before the holidays in December so you know a month and a half or so after after diagnosis

Scott Benner 24:43
and tell me which pump that wasn't I'm sorry.

Carrie 24:45
So we did the dash. We you know we vacillated you know between the wonderful pump options that are out there and for my son the the two pumps were just you know, he'd been pretty great about The whole thing given that his world was pretty shattered to, and his one, you know, red line was that tubing, I'm not doing it.

Scott Benner 25:10
Okay, well, so you end up on dash, and you're listening to the podcast? How are things going as far as like, what are your goals? And what are you seeing as far as outcomes?

Carrie 25:22
We're doing pretty well. You know, 65 70%, in range in range being kind of the default, I hadn't yet figured out. That wasn't the range that I should be hoping for long term, but it was taking a lot of work. I didn't think our basil was right. I was a little bit lost on what to do about that. Listen to the episode got that nailed down. And I'd say, so we cruised along on dash until, you know, beginning of May. And we were, we were 70 75%. In range, more highs than lows, nothing super high. And, you know, once in a while, we get a glimpse of an 85 or 90 or 95%, and range. And those were, you know, days where I'd screenshot my, my phone and like, you know, pat myself on the back, but nights, you know, waking up two or three times a night was pretty common. We were we were micromanaging it. I was literally a full time paying Chris. Yeah.

Scott Benner 26:32
So when you hear about on the pod five, is that something you thought immediately about? Or did you take time to? Oh, yeah, okay.

Carrie 26:42
I was, I was thinking about, actually, pretty early on, and then found out that the Omnipod, five was close to approval, although there was this caveat that people had been saying that for a long time. And I thought that was, you know, it was worth waiting a little bit to see if that came down. Because honestly, it just seemed a lot less intimidating to me. I mean, remember to we hadn't, we hadn't been doing this that long. So it felt less intimidating, it felt a little more user friendly. And I'm, I'm a help desk person, like something goes wrong on like, my work computer or my work email. Like, I like that I have someone to call and talk about that with. And on that basis alone almost loop didn't seem like the right fit at this time. So

Scott Benner 27:33
I gotcha. Yeah. When when your email won't work. You don't sit around trying to figure out how to fix you're like, I'm just gonna call this guy at the number. Yeah, that's me. I'm a help desk. Let her tell me. I'm not doing this. So I understand. I absolutely do. And so you get on the pod five, when may 7. Oh, look at your camera, like came on Mother's Day?

Carrie 27:55
Oh,

Scott Benner 27:57
that's an easy way to remember. Okay, so hold on. June, July, August, September, October. Oh, wow. You've had six months, six months. Okay. Great. Tell me all about it.

Carrie 28:11
Okay, well, the important caveat here is that we got it. We were We were one of the first people at least as best I can tell on like Facebook, who weren't in the trial to get it, or endo hadn't been trained on it. They were like, we're not going to be any help to you. You got to figure it out. We'll write it at the time it was off label because my son wasn't six yet. Well, we'll write the script, but like you're completely on your own. You hadn't you hadn't done any Pro Tip series on this yet. So we were really like, open the box, read the manual, try to figure it out. And with the benefit of hindsight, I might have done our setup very differently and probably saved ourselves a lot of time and heartache. But we you know, open the box and put in our settings and had a lot of struggles at the beginning.

Scott Benner 29:00
Okay, so your settings where

Carrie 29:03
we put our settings in from dash, I mean, which were good settings for Dash but I hadn't, I hadn't appreciated I was too impulsive about the whole thing. I hadn't appreciated how the algorithm was going to work. I had been so jumpy about getting it and wanting to try it right away that I hadn't. I hadn't thought through or reached out to resources about strategies for setting it up. I literally just dumped my settings in in hippo and I was like, Okay, great. We're

Scott Benner 29:31
all going to sleep now. So over, everyone is over.

Carrie 29:35
We're done with diabetes. I told my job I was gonna come back full time I was like, this is the you know, next week maybe the week after will be good.

Scott Benner 29:43
Yeah, I'm probably gonna start running like marathons and I am gonna die it probably probably gonna get shredded. You know, maybe

Carrie 29:51
I'm gonna have all this time on my hands. What on earth am I going to do with myself?

Scott Benner 29:55
I think I should knit while I'm running. This is going to be wonderful. So in stat is what, let me guess. And if I'm wrong, of course, not me, is what you learned over time that your settings from a manual pump were a starting point, but that you were adding insulin so frequently and other places that really your settings were very weak.

Carrie 30:18
That's completely true. The other thing that we struggled with was, there was no real direction on let the algorithm work, let it learn, don't touch it, let it do its thing, right. And then he'd be at like 250 and climbing and I'd be sitting in the corner, having an anxiety attack and being like, I can't let it learn on its own. I must give him insulin. And, you know, and then being told, Well, you're gonna screw up the algorithm when you do that. And you've done that. And so now you've like, set yourself back.

Scott Benner 30:51
Isn't it funny? Because it's the beginning. And it is a it's a different algorithm. There are people who will tell you don't touch it. Don't do anything. Don't just let it we'll figure it out. And then there are people who will say no, if your blood sugar's high Bolus and right teach it that you need it, you need more insulin, which I believe is the is the line, right from my, from the nurse practitioner that was on my thing, right? She's like, if your high Bolus, it'll figure it out when it sees more insulin, but you don't know either of those things to be true or not true. So you're just sort of sitting there going,

Carrie 31:28
right, I'll go a few days where I'll let it do its thing, and he'll be high, and then I'll have a panic attack. And I'll be like, I can't do it anymore. And I'll give him tons of insulin. And then it didn't seem to work. And so, I mean, the first the first month was really, really tough. I mean, it was our it was our own fault, in that we weren't sufficiently educated and didn't have the right expectations and didn't know how to manage it. But once we went back to kind of basic principles of insulin and how things work, we'd started to get better and figure it out.

Scott Benner 32:01
Right? Listen, if it makes you feel any better. As soon as last night, Arden had a she knows what to do, like the meals at college are terrible, right? So she has to basically make a secondary Bolus for her meals that come out of the cafeteria. She has to it doesn't it doesn't matter how big she tells it. Like if she if she says, Hey, this is 70 carbs this meal. And you know, she's She needs a secondary Bolus later, if she would have held the same meal, it's 90 carbs, it still wouldn't matter. That's how crappy the food is, you know what I mean? And, and so you have to, I mean, you have to understand how these algorithms all of them end up working. And so for Arden, who's looping last night, she has this one at blood sugar, like two hours after a meal. And I'm like Arden, you didn't make the secondary poll. She's like, well, I'm doing my homework. I forgot. I was like, well, that's fine, but put an insulin right. And so I I can see on Nightscout what she did. And she just makes a Bolus. And I text her right back. I'm like, Hey, that's not going to work. You know, that's not going, what are you doing? Like so She's so busy with her homework. She's just she like throws in like a unit a half of insulin. As soon as she does that the algorithms like a unit a half, we don't need this turns off her basil. And that's probably what was happening to you, when you were putting in extra insulin, like you told the algorithm, these settings are going to work. And then you're like, No, no, here's a whole bunch of extra insulin. And it's thinking, No, I'm going to get this blood sugar back down based on our settings, except it never was going to because your settings were that far off, I guess for the algorithm, how long did it take for it to learn? Or did you did you bite the bullet and reset the controller and start over. So we didn't

Carrie 33:49
do a reset? We did go all in on the teaching it if he's high on bolusing if he's heading high on bolusing, we made all of our carb ratios, more aggressive. We started treating lows much less aggressively and really like micro dosing it because the you know, we then understood that the background, it's basil, the micro boluses had been shut off for a while. And so the what we used to dose on the dash to treat a low was going to spike him super high if we did it this way because there was no insulin circulating around in his system. And we started just thinking about it differently. Like not to not to use the sports analogy, but I've I've used this when other people who are just starting on the five have kind of reached out to me. It's a it's a great teammate. It's like a star shortstop. It's gonna do a really, really great job, but you still have to you have to be in the game and you still have to play the game and it's so required ers, you know, work and care. And it can only it can't do there's, you have to recognize what its limitations are and kind of jump in,

Scott Benner 35:09
right? I feel great about what you just said about learning how we treat low blood sugars when you're on an algorithm, because I'm starting to see a lot of people figuring that out online, which is, which is really good. But the idea of, you know, if you're treating a low it, one o'clock in the afternoon, but this algorithm has been thinking for the last 90 minutes, you're gonna get low at one o'clock in the afternoon, it's been taking your Basal way, and insulin away in one way, or in one fashion or another, probably for 90 minutes. So yeah, you're still drifting low, because whatever happened before, ended up being too heavy. But there's nothing there to resist when you put carbs in, in that scenario. And so all of a sudden, 15 carbs or juice box or something like that, is going to turn you into a it'll turn into 250. You know, instead of before, when your Basal had been running the entire time in the background and you were low. It's odd that that low blood sugar on a manual pump versus that low blood sugar on an algorithm. The number is the same. But everything that happened prior to it's different.

Carrie 36:17
And the effect that anything's gonna have on it is totally different, right?

Scott Benner 36:21
Because there's either more or less insulin, new insulin from baseline for the last 90 minutes, depending on which system you're in.

Carrie 36:32
We rely on you know, the, the PDM. For the Omnipod. Five, there's a way to kind of see how it's been micro Bolus thing. And we try to look at that before we make any low treatment decision or any Bolus, you know, to stop a high or to stop a climb. Because we like you have to factor in what the pump is doing and how long it's been doing it for.

Scott Benner 37:00
Yeah, I think I'm supposed to say that it's a controller not a PDM anymore. Sorry, no, no, I don't. I just I don't want to, I don't want to get a text. Like, you know, a week after this comes out. And somebody says, hey, at 34 minutes in your conversation with Carrie about on the pod five, she calls it a PDM. And would you mind? So I'm getting around that right now. My son

Carrie 37:24
calls it the doser. So you know, whatever. Oh,

Scott Benner 37:27
yeah, that's great. I know, a lot of public relations people who'll be thrilled to know that. Give me the picker and the dozer and let's get rolling here.

Carrie 37:36
Yeah, that's, that's six year old terminology for about

Scott Benner 37:39
right for me. Okay. So how long did it so is hindsight telling you that you didn't put settings in in a way that was going to give you success up front? Yes. Okay. So did you have you learned over time that what, what ended up being in those Omnipod five pro tip episodes is true. Like, for some reason, when that algorithm begins, the settings needed to be somewhere near 5050. Basal Bolus, and then it adjusts off that it doesn't it won't even keep doing that five minutes later. It just for some reason needs to know that going in.

Carrie 38:16
Yeah. And look, I mean, one of the things that we've struggled with me occasionally, you know, talk about with some frequency is like, Should we do the Hard Reset? Right? Like now we're six months in, we have all this knowledge that we didn't have at the time. But I don't know if so risk feels like, I've spent six months teaching this out what to do, and it's pretty darn good.

Scott Benner 38:39
This is why women stay with men. Right? Yeah.

Carrie 38:43
Yeah, I mean, it's, you know, it's a big, it's a big leap to take. So I'm not there yet, though. You could you could potentially get me there. If you if you thought that was the right thing.

Scott Benner 38:51
No, listen, if I listen, but I know is, you know, not going to be helpful to you probably but so to kind of go over that a little bit. You know, it's in the on the pod five Pro Tip series, which I did in conjunction with Omni pod and healthcare professional and they're actually I have to say, so they're, they're, they're, they're good episodes, like they'll really will help you. But the the algorithm once 5050. And I have to say if I had that conversation prior to starting on on the pod five, when we started her, I would have probably just taken her total daily insulin and chopped it in half. I think that's what I would have ended up doing. I think I would have just said like, I don't know, she gets this much insulin every day. I'll take half of that number divided by 24. And that's going to be our Basal rate.

Carrie 39:45
I mean, that's what we would like if we were starting this now with all that with the benefit of those episodes and that knowledge, that's what we would have done, but, you know, we we didn't have it and we're not anywhere near 5050 Um,

Scott Benner 40:00
Yeah, not not not to say that your son needs 5050. It's to say it's you really have to listen to it to hear to explain, but that's what the, for some reason, that's what the algorithm needs as it begins to learn. Right. Right. Right. So, and I don't, I don't know. Like, I don't know why it doesn't just, I don't know. It doesn't. Listen, I don't know, I didn't program the thing. So I don't understand how it works.

Carrie 40:26
It just is what it is. But in retrospect, given what we experienced in the first few weeks, it's easy to see why that it. It makes clear that what what you said in the in the episode about that is right. Like we were not at 5050. Our settings were at 5050. And that was a mistake.

Scott Benner 40:44
Okay. And so what you got out of that were spikes and meals,

Carrie 40:47
spikes at meals, she, you know, huge spikes with low treatments until we figured out that we were completely doing that wrong. And, but pretty stable night times, almost from the beginning. I'm not sure that without the stable night times, we would have stayed with it at that time. You know, I think we would have probably stopped it and then come back to it once like there was more kind of knowledge of how to set it up and how to get started with it successfully out there. But I was jumping in I wanted it and I wanted it now and you know, there's a price to pay for that.

Scott Benner 41:29
You were enticed by the sleeping? Oh,

Carrie 41:33
yes, it was good. I mean, really can't. And we haven't been at it that long. We were only sleep deprived for you know, from like October to May I can't imagine people that have not slept in years. How wonderful. Something like this would be. But like barring a technology failure, a compression low that screws things up. A sensor error, you know, a pump sight absorption issue, right? Something like on the technology, we all basically slipped through the night. Yeah, no, that's pretty great. It's really good.

Scott Benner 42:10
Yeah. Arden had the same situation with the Omnipod. Five, like almost immediately, like her nights are for really terrific. You know, actually, I've learned a lot about overnight since Oregon went to college because because she's so far away, excuse me. And you know, there's no way to help her and all that stuff. We did kind of dial back her her overnight numbers a little bit like, you know, I'm okay if she's overnight at 95 100 105 110. Like she because she's 13 hours away from us. And you know, my best bet to save her life. If, if something happens is a person who lives with her who may or may not be drunk, you know what I mean? So excuse me, when that becomes your reality. You're sort of like, alright, well, let me be a little more careful. But after the first couple days, and getting things figured out, like I mean, I should probably knock on something. But Arden hasn't had a low overnight, like the entire time she's been away at school. Yeah, it's huge. It's a big deal. So, so Okay, so that that kept you in the game a little longer. You're like, Alright, man, again, I'll figure out the rest if I get the sleep. Right. So what did you actually figure something out?

Carrie 43:23
No, I Well, I changed our changed our ratios, so that he was getting bigger Bolus is at mealtimes. But in an effort to raise the total daily insulin and compensate for what I viewed as like, a less aggressive than I'd like, micro bowl, I

Scott Benner 43:43
stop you for a second and so on the pod says that when you change that settings in the pump, when you put settings on the pod five, those settings, as soon as the algorithm begins to work, those settings are only for manual operation, that that is completely correct. Okay, so you're saying we might say you change ratios? You mean Sorry, you kind of started counting carbs differently.

Carrie 44:09
I started counting carbs differently so that he was getting more insulin per day than he was getting with our old.

Scott Benner 44:19
Right. So you, if I met, you said, Hey, carb ratio is one to whatever you thought it was, right? You see that not working? You can't just go tell the pump. Hey, magic algorithm, instead of it being one to 20 carbs, I want you to make it one to 15 carbs, because that doesn't change the algorithms opinion. Right? And so you started counting up a meal and going I think this is definitely 40 carbs, but I'm going to tell the puppets 50

Carrie 44:48
Right. I'm going to give him more I'm going to tell the pump that he needs more insulin on a daily basis so that when the pump is aiming for it's 5050 it's Thinking about the total bottom line number differently.

Scott Benner 45:03
But then after it figures that out, does it mess you up when you're counting carbs? Like you always have to overestimate the carbs? If no,

Carrie 45:10
then then you got to back it off. Okay? So the other thing that we I don't want to say like figure it out. But we started changing our Pre-Bolus time. We were we were militant, about a 15 minute Pre-Bolus. Scott said it's a 15 minute Pre-Bolus, the pro tip episode says it's a 15 minute Pre-Bolus, it must always be a 15 minute Pre-Bolus. And what we found was that, depending on how much might how active the algorithm had been in the background, leading up to the meal, a 15 minute, Pre-Bolus wasn't always going to lead to a successful outcome. And that, you know, whereas prior, you know, on the dash, let's say he goes, you know, iDose for a meal 15 minutes before he's 115 and flat, and I want him to be, you know, 90 Heading down when he's going to eat whatever he's about to eat. So I, I Pre-Bolus, for what I know, will get him there. If you take that same strategy on the Omnipod, five, what we were finding, and Danny is pretty insulin sensitive. So there's a caveat there. But what we're finding is that the algorithm would see him heading down, and would reduce or cut off the basil or the micro boluses. And if we could have him eating when he was 100, and flat or 110. And flat, there would still be insulin being given to him in the background. And that was leading to much more successful outcomes post meal time. So we started changing the Pre-Bolus time from 15 minutes, I'm really sorry, I know it's supposed to be 15 minutes, not

Scott Benner 46:58
supposed to be what they meant.

Carrie 47:01
But we we we have now sort of adjusted it based on what how much insulin, we think he has circulating his system based on the auto history. And it's been a lot more successful.

Scott Benner 47:13
And you've been making the Pre-Bolus longer or shorter, shorter.

Carrie 47:18
I mean, if he's high, we'll make it longer. Or if he's heading up, we'll make it longer because we want to give the insulin a chance to work. But if he's kind of where I want him to be after the meal, depending on what's if he hasn't gotten the insulin in a while in the background, we'll keep it around 15 minutes. But if the pump has been active, we'll make it we'll make it shorter so that he doesn't go low pre or during mealtime, right.

Scott Benner 47:45
Wow, you're good at talking about this? Do you know

Carrie 47:49
I've listened to you a lot. And I'm just trying to

Scott Benner 47:53
know I mean, you're good at explaining it. You know, it's it's a simple idea. And it gets lost on people when they make the switch from pumping to algorithms that there's nothing in your pump, when you're using a regular pump that says, hey, you're getting low. So I'll turn off your Basal insulin. And because of that, all of your experiences are predicated on a constant delivery of basil. And now your experiences aren't always predicated on that. And it's a leap for some people. And I don't know if it's just because they don't think of it that way. Or if they have just been if they if they really didn't know what they were doing before they just learned what to expect and how to handle it. Do you know what I mean? So I was very heartwarming to hear you thinking through all this and figuring it out. Well, today now six months later, what how's it going? I mean, do you spike it meals anymore? Did you figure that all out? It's it happens sometimes you know how to fix it. What happens? I

Carrie 49:04
mean, look, he's six. So so there are there are days where, where it's just total brilliance like Halloween, Halloween just happened. That's a that's a good example. He was he was 99% in range 80 to 150 as the range set the entire day. And given what went on that day. Like I pricked his finger when he was fine, because I didn't believe that the Dexcom was working, because it was it was that good. So there are there are stretches and days of like total brilliance. And then, you know, there are days when for whatever reason, were less successful. I mean, the variables are still there. It's not eliminating the variables. It's not eliminating a super absorbent pump site where he's gonna be low more. It's not eliminating the level of activity. It's not eliminating growth hormones like one of the things that we didn't know at the beginning, but we've learned is that the algorithm can't learn time of day, the algorithm is never going to learn that your kid goes to sleep and starts climbing at 10 o'clock at night, it's never going to learn that it can't. So that's where like, you know, you need to be the team player, and you need to come in, and you know that that's going to happen, you have to, you have knowledge that the algorithm doesn't that every night at 10 o'clock, our kid rises because of growth hormones, and we need to Bolus that we need to Bolus it early, and we need to do it aggressively. So, you know, in terms of in terms of outcomes, his his agency is great. His time and range average over 90 days is is 89%. And, you know, there are some bad days built into that. And then there's some real brilliant days built into that. And you know, I'm not, I'm not sure how to make it better, I have noticed that like, one of our struggles now is figuring out how to string together, more of the brilliant days across multiple pump changes. I think it's the learning nature of the algorithm, I don't know. And I don't think insolate has shared sort of the period of time that the pump considers in making adjustments to its own calculations, but you have to recognize that that's like an evolving thing. And I'd like to be able to stretch together more brilliant days in a row without a bad day in between. But I'm not sure how realistic that is,

Scott Benner 51:47
when all this technology comes out doesn't matter what company it comes from, I always try to remember how amazing it was to get a Dexcom the first time. And now in hindsight, I look back at it. And I think well that thing was not as accurate as it could have been. It was difficult to put on it the use of a manual inserter the Dexcom Did you know that you'd like put the sensor bed like on and there was like a tube that came off it with a plunger at the end. And you would actually have to like, like, boom, like push down on the plunger to get it to go in. And you know, like I look back on all that. And I think well with hindsight, that looks like a train wreck. But in the moment, it was the best thing I've ever seen. Yeah, it was the absolute the best thing I had ever seen in my life. And so I try to apply that idea to Omnipod five or blooper, anything that people I keep thinking like, imagine what its gonna look like a year from now, or two years from now or five years from now, like, this is gonna be amazing, you know? And you're not describing something that's like, oh, a train wreck you're describing? Yeah, yeah. And that's what I want to understand, like, compared to you doing it manually. So for a moment, take out all of your effort and your time and you're not sleeping, right, because we understand that you got saved all that stuff. Right? Just just management, just health wise, are you where you are before, worse off or better off?

Carrie 53:18
Definitely better, unquestionably better. You know, both on on a numbers basis, and also on my mental health in terms of the variables that I'm dealing with. I mean, I remember I listened to like your pro tip episode on like basil testing. I'm like, sitting there looking at my, like, newly diagnosed six year old, and I was like, No, effing way. Right. Like, like, it just felt so hard. And then the idea that you could nail it and then have to change it. And the beauty of the five is that it it kind of takes if you're just camping out in automated mode, which is what we do. Like, it kind of takes that away, like it eliminates the variable of whatever you think the Basal rate is or should be. And that's, that's really freeing.

Scott Benner 54:12
Yeah, no, I understand. Excellent. Well, that's great news. Like you're a, you're a proponent, that if somebody came to you and said, I'm thinking of getting this, you'd say, do it.

Carrie 54:24
Absolutely. Do it. Understand how it will work, right? Understand that it's the teammate. It's not going to carry the team, you have to be there, you have to be engaged. I think the auto history is really important. And factoring that into how you manage your child is is really important. And I think that there's, um, that on the low treatment side, I mean, we we made this chart for like his summer camp. He goes to like a day camp locally, and they have a nurse team that manages it and they've been managing kids with diabetes. His for a long time. And we roll in and they've never heard of the five before. And they're like, Okay, so if he goes low, we give them a juice box, right? And I was like, Wow, no, here's my, you know, Excel spreadsheet of different scenarios where you might treat with two carbs, or six carbs, or eight carbs. And I think if you can, if you can figure that out, and what works for your kid, and figure out the Pre-Bolus time, you know, are you going to have a flat graph, you know, flat at 110 or 100, every single day. I don't think that's a realistic expectation, or at least I haven't figured out yet how to make that happen. But, look, I mean, you high 80%, over a long period of time with sleep, almost doesn't matter what you have to do during the day.

Scott Benner 55:49
And your, your son's not eating like a pescatarian diet are some specific,

Carrie 55:56
if I told you what my son ate, it would make your skin crawl. He has Eggo waffles and pop tarts and pizza and cake. And I mean, we, you know, there's lots of different schools of thought for us and for our family at this moment in time. Keeping his normal as normal as it was, was really important, I think, for his mental health and his acceptance of this. So that's the choice we made and may make a different choice down the road, he may make a different choice, but no, I mean, like I, I can dose Toaster Strudels and not have a spine. Now,

Scott Benner 56:32
when I look at you, I have two things I want to say here. One, I'm going to say kind of sounds joking, but I'm being serious. On the pod.com forward slash juicebox. If anybody listening is thinking about getting an omni pod dash or an omni pod five, thanks very much. The second thing is, I I'm, I'm really stunned at how you were able to take my like not the Omnipod five Pro Tip series, but the other Pro Tip series, the bigger one, and you took the information out of it, and you did with it what I intended, which is you, you learned about it, and then you molded it into your life, and you extracted from it and built onto it. I know that people can hear them and think these must be the rules. But they're just a jumping in point, do not Don't be mean like you have to experience the rest of it that you have to apply it and watch it work and watch it fail and go, Okay, I that's really I don't know, I'm just very I don't even know what the word is, like, you're making me feel very good about something that I did.

Carrie 57:41
You should I mean, we, we wouldn't be even close to where we are now. Without that, and the fact that it can be applied to, you know, the fact that it can be applied to a new technology that didn't even exist when you were or at least didn't exist in your world, when you're making a lot of these episodes, insulin still works the same way. And it works the same way, whether you're on loop or on the five or anything else. And you know that

Scott Benner 58:11
that's great. It really is amazing. I'm, I'm so happy for you guys, first of all, but I don't know, like you say something out loud years ago, like this whole thing, like, you know, I used to say all the time, like managing insulin is about timing and amount, you have to use the right amount of insulin at the right time. And it holds true. If you're putting it in with a syringe, if you're putting it in with a pump, if you're putting it in with an algorithm, it all still is the same there are influences on your blood sugar, and there and and you know, that are carbohydrates or body function or whatever that are trying to push your blood sugar up. There are influences on your blood sugar that are insulin that are trying to put the push them down. And you just have to kind of keep those influences in a state of flux where they really neither of them can kind of beat the other one. And then that's what stability is. You know, and if you can wrap your head around that, then you're on your way. But I don't know I mean those protip series it's 2022 in November, I think they came out in 2019 or 2020 Maybe it so they're already two almost three years old and and that they applied to another Technologies. I'm just very happy today to hear this from you. It's it's interesting. I feel like I'm hearing my voice filtered through another person's life and then spit back at me if that makes sense while you're talking.

Carrie 59:37
Oh, that's that's great. I mean, I you know, I think some of in addition to the Pro Tips The one thing that I would say is you know, there are little nuggets in a lot of the other episodes that can be life changing. I mean, I I've said to other people that changing our ducks calm lines changed my life and rethinking about the way that you say Your own expectations is is also, you know, as the caregiver, your you know, our mental health matters to matters less but matters too. And, you know, the way the human brain works? I mean, you said at the beginning it, it, it's consistent. So

Scott Benner 1:00:16
yeah. Well, so do you feel like take all the diabetes stuff away? Do you feel better? Now, like than you did a year ago? Are you different?

Carrie 1:00:27
I mean, then then at diagnosis, yes. I mean, we, I recognize that, like, we're, we're early in this in this marathon that a lot of people have been plugging away at it a lot longer than us. And, you know, we sort of have this luxury of having the, you know, the best technology available now. And that's, you know, an incredible gift that I feel like I've given my kid. Yeah, I mean, look, are there days where I want to still sit in the corner and cry? Of course, absolutely. Like, both, you know, on a macro level, because he has type one diabetes, and also on the micro level, because maybe he's having a day where what I think is gonna happen doesn't really happen. But I think I'm getting better at it. And I think you do. At the beginning, everyone said, it gets easier. And I was like, That's BS, right? That's like when someone you love dies? And they're like, Oh, time will heal it. It's like, No, it doesn't heal it. I still missed the person. It doesn't get better, you just get better at it. Yeah,

Scott Benner 1:01:36
it's 100%. Right. Now, I mean, I don't know if you're quoting me, or if that's your experience. But yeah, that's, it's just right. diabetes is always hard. And, but there'll be a time when you have so many tools and so much experience that it's, you know, it's it's, I don't know, it's sort of like when you watch a sporting event, or, you know, you think God, how does that person do that? Yeah, I could never do that. But right, you know, maybe you couldn't, maybe you couldn't throw football 70 yards in the air, right. But you could find a way to get better at throwing a football and you might get you know, and then that would make the thing the task easier. And this is what happens it to all levels with people.

Carrie 1:02:15
And I'm hoping the week continued, that it continues to get easier, because I still feel like it's my full time job. And I'd like to get to a place where maybe I don't feel that way. But I think it's like important to know that it's, it still sucks, it's always gonna suck, it's always gonna be a lot of work, it's never going to be like under control. But you do start things get easier little things, we wouldn't let them have Toaster Strudels at the beginning, because I couldn't figure out how to dose for them. And then eventually, I figured out how to dose for them. And now he's happier because he can eat his crappy breakfast in the morning. And little thing, like those things get easier. And I'm excited to see how much easier they can get as we kind of go through this.

Scott Benner 1:02:55
Oh, the other, um, a couple weeks ago, art and I saw something happen with her blood sugar like it started to go up. But then it stopped. And it got like, whatever. I wasn't with her. But something hit her hard. But her Bolus hit hard back and then she leveled out. And she was good. And it didn't take long. Like it wasn't a big spike or anything like that. And I asked her later in the day, I was like, Hey, would you eat you know, last evening, like eight o'clock or something like that. She was oh, I got hungry. And the cafe was closed already. I couldn't get over there in time. And I was like, okay, she because I just had a bowl of cereal. And I was like, Oh, wow, I didn't ask her what kind I don't know what she ate. But I all I know is that my 18 year old daughter Bolus, a bowl of cereal, didn't go over 140 and didn't get low afterwards. Like, that's amazing. Because I can remember, I can remember standing in my kitchen, going, Hey, what do you want for breakfast? And then thinking in my head, don't say cereal? Don't Don't? Don't Don't Don't Don't Don't say that. You know, and, and then there's that, of course, there's an episode where I talked about where she got old enough, you know, when she was younger. And she was starting to understand her appointments. You know what I mean? We're in with the Endo. And then we got outside in the driveway. And she said, What could I do to make my agency slower? And I said, well, for the moment, if you could just stop eating cereal, that would be huge. Because I haven't figured out how to do that yet. This is a long, long time ago, you know, and, and she's like, okay, and she just stopped. That was it. And then I figured it out better. I figured out insulin in general. And then I started applying it to higher glycemic stuff and figuring out how to do that. And I mean, I wouldn't say that Arden probably has five bowls of cereal a year, you know, but at least we know how to handle it. Now when it happens. It's very cool. Carrie, is there anything we haven't said that you want to anything we've skipped or missed or that I haven't asked? I don't think so. We did it that easily. This was very good. I almost don't want to make this a long Are episode because it's so succinct. And you were so clear about it. Yeah, exactly. You'd come back later because you seem cool. I think we would like each other.

Carrie 1:05:10
I happen to be a Phillies fan as well. So I think I think we could get along very well.

Scott Benner 1:05:15
Are you in the area?

Carrie 1:05:17
I'm not but I went to college in Pennsylvania. Oh, no kidding. So I was surrounded by it for for a long time and didn't have a strong opinion of my own at the time about baseball teams. So I was happy to kind of sign on with what the group was doing. It would be

Scott Benner 1:05:33
hard to be here and not be a Phillies fan that's for sure. So why don't we just because it has to go somewhere in the episodes I will just tell you that the World Series is happening right now as we record this, the Phillies are down three games to to win the World Series are heading back to Houston for Game six. And my son and I actually went to the World Series last night, we went and watched the Phillies lose three toe. But it was one of those things that, you know, as soon as they got in, I said to him was like if we can find a way to go, we should go you know? And he's like, Yeah, okay. Like, like, you know, wasn't gonna get him to argue about that. I've never been to a World Series, I think he and I went to one, one national league championship game, maybe in 2011, if I'm remembering correctly. So the oddity is, we don't go to a lot of baseball games, like in person, like professional baseball games, because my son is usually playing baseball when baseball is being played, so you don't get that opportunity. And anyway, it very quickly became obvious that we did not win the lottery from the Phillies for tickets, you know, which are at ticket price at face value. And you start looking into the secondary market, and the tickets are just, they're ridiculous, like, you know, very cheap seat very, very cheap seats are $800, like $1,000. And you don't even get a seat, you get to stand in a sea of drunk people and watch the game, you know. And I went online, I thought, I wonder if I know anybody, like through the podcast or something that might know somebody says it does anybody? Would anybody be able to get tickets for this game that, you know, if they were interested in selling, I'd want to know about them. And the one thing you don't know is that a person contacted me privately and said, I have a friend whose father is a part owner in the Astros. And I might be able to get tickets. And we tried that that didn't work out because we asked so late. And other people would come online and say like I used to try here, actually, one person gave me an idea of of an app to use that ended up being less expensive. But what I didn't expect is that someone came on to the Facebook group and they're like, Hey, everybody, let's give Scott money to go to the World Series. And I'm like, now that gets weird carry because I have a job. You know what I mean? Like, and I'm not looking for people to like, I don't know, crowd fund me going to a baseball game with my son. And she, she had made this. It was Susie, she had made this like overture online. And I have to admit, I ignored her. Like I just I didn't want to like because no matter what I do, she's going to do it. Like if I go no, no, no, don't be silly. Please don't do that. She's gonna say no, you helped me or whatever. And I'm gonna do this. So I just kind of ignored her I felt bad. And then she emailed my moderator and said to Isabel, I want to put up a post to try to raise money for Scott to go to the World Series. And now I it's weird, because I'm you don't I mean, Carrie, like, I It's lovely. And that would be amazing. If somebody did that for you, but I don't need that. And there's part of me that doesn't want it. Do you know what I mean? Like, I don't want somebody to do that. So I told Isabel, you're gonna get a note. Ignore it. And, and she's like, Okay, I'm like, just don't respond to this. I feel bad. I'm like, just don't because it's gonna turn into people giving me money to go to a baseball game, and I'm uncomfortable with that. But then Susie just kept going and going online. And finally she put up a post and said, Hey, like, let's Scotland's go to the worlds here. You don't I mean, like, it's the weirdest, like, make a wish thing ever. I don't have any reason to be making a wish. And the next thing I know, there's like $1,300 in a pile. And I said to my son, I was like, Well, I now people gave me this money. I was like, i i I'd feel weird now not using it for what they wanted me to use it for. So we got up yesterday morning, found seats online, and I had a great time. Like, it was awesome. Really. It was amazing. It's the most intense sporting event I've ever been at.

Carrie 1:09:36
I brought my I brought my six year old to his first baseball my type one to his first baseball game. I took him to a Mets game over the summer. And I thought to myself like, Okay, this is gonna be hard. This can be hard to dos. He's gonna want everything. And it actually you know, it. It went really well. It was like one of those holes When miracles like the algorithm handled where, where I got it wrong, and I just kept giving insulin when I saw I'm starting to creep up, and it was actually like really empowering because you spend all this time counting the car, you know, when you're first diagnosed, counting the carbs and thinking about Pre-Bolus time and all the rest. And this was a night where we just sort of, alright, you want to chicken fingers in the fries, you want to chase it with that the ice cream cup that comes in the helmet like it is what it is.

Scott Benner 1:10:30
You probably felt the way I felt the first time in a movie theater that artists like I'm gonna get a slushy and yes, and cookie dough bites. I was like, I don't know if that's a good idea. But yeah, so I put your game face on. Yeah, we were no algorithms then. Like I remember us being in the lobby. And I was like, if you're gonna do that we're gonna Bolus right now. And I and my, my theory was bunch of insulin. And then we'll feed the insulin backwards, like so that's basically what we did. Like, we got her falling, and then you start hitting this IC and that thing, just boom, boom, that keeps trying to push you up. And I just kept using the IC as a parachute for the freefall from the insulin. And that I've you know, over over the years, I got better at it. But the first time that's what I did, I was like, I'm just gonna pour this insulin over your head, and then you start drinking the Coca Cola Slurpee that you just got. So anyway, Carrie, I really appreciate you doing this. I have to jump off because believe it or not, I'm recording another episode a half an hour. So

Carrie 1:11:32
I'm thanks so much for your time and for everything you've done for us. I really appreciate it.

Scott Benner 1:11:35
It's my pleasure. Did a lot for me today to like hearing you talk about stuff through the lens of the podcast was was uplifting to me. So I really appreciate that.

Carrie 1:11:45
Thanks, Scott. I really appreciate it. I'll talk to you soon.

Scott Benner 1:11:54
A huge thanks to Carrie for coming on the show and sharing her story with us. And I want to thank BetterHelp and remind you to go to betterhelp.com forward slash juice box to save 10% off your first month of therapy. So many of us spend so much time helping others. Once in a while you should help yourself betterhelp.com forward slash juicebox. A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juicebox. Don't forget to check out the private Facebook group. It's completely free Juicebox Podcast type one diabetes. And if you're looking for all those episodes about on the pod five, there's a list right in the private Facebook group in the feature tab with all of them right there. I think you can also find them at juicebox podcast.com. Or go into your podcast app and search Omni pod five pro tip. They'll pop right up. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#926 Tough to Process

Kelly has type 1 diabetes and digestion issues.

+ Click for EPISODE TRANSCRIPT

Scott Benner 00:00 Hello friends and welcome to episode 926 of the Juicebox Podcast. Today I'll be speaking with Kelly. She's the mom of a child with type one diabetes. And we spend a lot of this episode talking about digestive issues which is very impactful for type one, and thusly why it's the subject of today's episode. 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 health care plan for becoming bold with insulin. Speaking of bold, managed to get yourself some great sheets at cozy earth.com Save 35% at checkout with the offer code juice box, take care of your mental health@betterhelp.com forward slash juice box and when you use that link, you'll save 10% off your first month of therapy. And of course a free five travel backs and a year's supply of Vitamin D is what you get with your first order of ag one with my link athletic greens.com forward slash juice box. This episode of The Juicebox Podcast is sponsored by ag one from athletic greens, athletic greens.com forward slash juice box you can start your day off with this same green drink that I do. The podcast is also sponsored by cozy Earth cozy earth.com forward slash juicebox the most comfortable joggers I've ever owned and sheets I've ever slept on came from cozy Earth, save 35% off your entire order every time you order from cozy earth.com When you use the offer code juicebox at checkout.

Unknown Speaker 02:10 Are you ready for me to start talking? Yeah, I'm

Scott Benner 02:12 sorry. I said do it. Did you not hear me? Oh, gotcha. Gotcha.

Unknown Speaker 02:15 Okay. Well, hi, my name is Kelly. And I'm from Oklahoma. Well, I've lived here for almost 30 years. I'm not really from here, but this is where I am. I'm a mom of four kids. I just sent my last two to college last month. So I know you're an empty nester as well. Anyway, I was diagnosed as type one at the age of 49. And so seven years ago, almost seven years ago. We have a history of autoimmune illness, but no one else had type one prior to my diagnosis.

Scott Benner 02:47 Kyle, you're 56 and all of your children are gone. Isn't that beautiful? I mean, it sounds amazing. Yeah, well, my

Unknown Speaker 02:56 oldest is 28. And my twins are 19. And I have a 25 year old daughter.

Scott Benner 03:02 Wow. Yeah. Why is that freaking me out? Give me a second. I'm doing good dentists. Two takes me to 10 and then six more.

Unknown Speaker 03:11 I was 28 when I had my first one. He's 28. Thank you.

Scott Benner 03:14 Yeah. And I was doing okay. Whoa. 20 plus 2266.

Unknown Speaker 03:18 I know. Yeah. Cool. Yeah. Well, it's.

Scott Benner 03:21 It's cool. It's pretty predictable. Kelly, and I'm not sure why I didn't see

Unknown Speaker 03:27 the math girl. So

Scott Benner 03:28 you were 28 when you had your first. Oh, yeah. Wow. How about that? Yeah, that seems so that's young. But seems late to me because of how young I was. How old were you? Oh, gosh, we'll call it 22. And I'm 51. So he was born in 2091. I was 20. Actually, what am I doing? I was 29 when he was born. So I don't know why this is striking me this way. Probably because of my loose understanding of mathematics.

Unknown Speaker 04:01 There you go. I still count on my fingers. It's good.

Scott Benner 04:04 I was just counting on my fingers just now. Kelly.

Unknown Speaker 04:07 I literally majored in math in college and I count on my fingers.

Scott Benner 04:10 Did you really what was your major? Math, just mathematics? Yes. That's hilarious. Okay. It is sunny. So you said there was other autoimmune in your family? What was it?

Unknown Speaker 04:24 Well, at the time my mom had vitiligo and then my daughter at the time that I was diagnosed, she had just been diagnosed about a year before with lupus. She was about 17 when she was diagnosed, and then I was diagnosed with Hashimotos. About three months before I started having the issues with type one.

Scott Benner 04:51 Okay. All right. So there was an How old's your daughter now? The one with lupus 25 Has that change? arranged for her it all over those years.

Unknown Speaker 05:03 Yes. So so well, you know, it's interesting because I have a son who I think has something lurking. We don't know what it is yet. It's just she flares a lot more often. She's a nurse. She's in nurse practitioner school right now. And, you know, she's just exhausted a lot. And it was she was always kind of in that way, even in college, you know, she'd get all ready to go out. And I'd be like, I can't go. You know, I mean, it really, you've heard that spin analogy, I'm sure. I mean, that really was true for her. But now, if she has a long weekend, or you know, goes too hard, she's in bed. So it's tough to be her age and be that sick.

Scott Benner 05:47 She doesn't have a thyroid issue at all.

Unknown Speaker 05:50 Nothing diagnosed, she has some food. Allergies, I would say definitely not diagnosed allergy, but like, makes her so incredibly sick. The second it touches her mouth, so whatever you want to call that. And so it was one of my son's so

Scott Benner 06:07 I get a fair amount of allergies. But has her thyroid been tested?

Unknown Speaker 06:12 You know, I do not know and I'm going to ask her that question. I would

Scott Benner 06:16 love to know that. Okay, I will find out I would like to know if her TSH is over about two 2.1. And if it is I'd like somebody to treat her for thyroid issues and consider giving her a T three supplement if the T four doesn't bring her energy back.

Unknown Speaker 06:32 Okay, I don't have her chat. Or you know, my son who has the energy issues as well. His thyroid was checking it's normal.

Scott Benner 06:40 So you have to be careful about what that means. Oh, I know. Because the doctor will tell you it's in range. But that doesn't mean anything like hold on a second thyroid. normal range. I'm googling. Yeah, it's

Unknown Speaker 06:56 like point on your TSH. It's like point three to five. It's a pretty big range their minds point four.

Scott Benner 07:03 Yeah. And then I just I don't know. Like, I think that I think that a lot of doctors do the it's in range thing and your thyroids four or five, that's not enough medication. Like you're not taking enough medication if you if you're if yours is 4.4 point for your towards hyper. Right now I am I see. So your medication is too strong.

Unknown Speaker 07:32 I don't have any medication. So that's the thing. So I was on thyroid medicine back in my 20s. And then when I was pregnant with my son, they took me off of it. So 28 years ago, I have not been on medicine for 28 years. And so that was an endocrinologist that took me off of it. And so then all these years, it was just sometimes it's high. Sometimes it's slow. I mean, I just kind of would would go back and forth. So finally got diagnosed with Hashimotos. Well, my number and every time I go is like you're in range, you're in range. Well, I have huge goiter, I've got probably 10 nodules. You know, they're like nine millimeters, eight millimeters, seven and a half. I mean, like big ones. And they do the biopsies and all that stuff, but they don't ever do anything to treat it. So used to be like point eight and like, if you look at my trend, it's getting lower and lower.

Scott Benner 08:33 And they never talked about addressing the thyroid.

Unknown Speaker 08:37 No, I mean, like guys retired, not retiring, but he's switching over to the VA and I'm getting a new one starting next month. But no, and I'm like what I've read says that it's working harder and harder and getting bigger and bigger. I look like Jeremiah bullfrog is not that bad, but

Scott Benner 08:57 like I have a bombastic picture, Scott, I'm sorry.

Unknown Speaker 09:03 It's noticeable. It's just and you know, it's getting bigger to stay in range, and it's about to pop out of range. And then I don't know what they do.

Scott Benner 09:12 Yeah, I don't know, either. But make sure you come back on the podcast after you find out okay, Kelly,

Unknown Speaker 09:17 I will do that.

Scott Benner 09:19 So alright, so you've got some sleepy kids and some kids who don't eat something's because they have bad allergic reactions. Thank you kids. Yeah, same to kids. And then you are 49 when you're diagnosed with type one.

Unknown Speaker 09:34 Yes. And I had meningitis. How

Scott Benner 09:38 do you live in a sewer system? How did you get meningitis?

Unknown Speaker 09:43 I was in Mexico and I don't really know because my I'm not married anymore. But my husband at the time and he didn't get sick. But everybody on that trip that we met you know you kind of meet people at the pool and you get to be friends with people whatever. Everybody He had something weird going on on that trip. None of it was the same, but just weird stuff that I remember. And yeah, I came back and thought it was a migraine took my medicine next day took more medicine. Yeah, took three rounds of a trip tan. And it was my daughter's graduation from high school and we were hosting a party and, you know, off I went to the party, and then it came home and started running a fever. And you know, they figured out it was meningitis. So

Scott Benner 10:25 can you hold on one second? Yeah, this segment of the Juicebox Podcast is brought to you by the Mexican travel Council. Good. No, I'm just kidding. How ironic is your problem. Now? I was just being sarcastic because oh my god, you got meningitis and Mexico.

Unknown Speaker 10:42 I know, right? Viral? nonbacterial I'd probably be dead. But yeah.

Scott Benner 10:47 Okay. Jesus. You're, by the way, if people want to sponsor segments of the podcast, please contact me. I feel like I would do. That would have been hilarious. Imagine if you're in the middle of a conversation. I'm just like, can you hold on one second? Do you need a Casper mattress? Are you tired like Kelly's daughter I Casper mattress? I could see this working please get a hold of? No. Okay, so the meningitis How long did that take to to deal with?

Unknown Speaker 11:18 Um, what was in the hospital for several days. I actually wish the er the first time. My husband at the time was like, oh, we'll just take her home. She's fine. So I came home. And then he got up, went to work the next day and get any of my meds for me. And so then I was really sick that next day and went back to the doctor, and then that's when they admitted me. I think I was there. Three or four nights. And then, you know, they sent me back home and it was okay. I mean, you know,

Scott Benner 11:52 what's the chances that your ex got either meningitis on purpose? percentage wise?

Unknown Speaker 11:58 Probably not. But okay.

Scott Benner 12:02 I like by the way, how long have you been divorced?

Unknown Speaker 12:06 Officially since February?

Scott Benner 12:08 Oh, wow. How long? Have you been six months? Were you separated before that for long? Just like three months. Okay. All right. Because I read about

Unknown Speaker 12:15 a year ago that he had, like, it was like the end of October. I was like, I can't do this.

Scott Benner 12:19 I say does that have anything to do with the health stuff?

Unknown Speaker 12:22 Um you been mean getting sick?

Scott Benner 12:28 I mean, that that? Was there something about you having issues that that impact because you guys must have been married forever, right?

Unknown Speaker 12:36 We are married 20 years I had was married previously, when I had my first two my older two kids. Okay, we married had twins. And we were married 20 years. And ya know that my health issues had nothing to do with us getting divorced, but I'm not gonna say they didn't probably lead to me. Not feeling so good sometimes.

Scott Benner 12:58 So I don't want to make you feel badly. But I feel like I need to ask you. So how would the health stuff impact a relationship? There's a good question.

Unknown Speaker 13:09 Um, I think if you are a sick person, you know, where you have a sick mentality. I think that could really wear on a relationship. You know, if you're always complaining, always tired always. You know, whatever, which is not my personality. He literally would say, I forget that you're a type one. I mean, he literally knew nothing about my really my disease or how it worked. Because I just do it.

Scott Benner 13:40 So, but you didn't feel well. And that impacted your personality. Oh, no, no, no,

Unknown Speaker 13:46 I'm saying I think that could for somebody. No, it didn't impact mine at all. No, it had nothing to do with our separation and divorce.

Scott Benner 13:54 Gotcha. Okay. Yeah. Thank you. No. All right. Sorry. I was

Unknown Speaker 14:00 No, I just raised four kids and I didn't need to raise a fifth one. You know, I kind of got tired of

Scott Benner 14:09 oh, all of us. Life is so cyclical, isn't it? Like, like, it's just it's amazing. There's a moment when just when we want to make a family, and you'll look right through things like that. You're like, you know what? This person has a job that reasonable. No one's ever hit me. He's handsome. Let's do it. And then later, you're like, all that stuff. I overlooked. I do not like this anymore. But we're raising these kids. So I'm gonna ignore it.

Unknown Speaker 14:37 I'm gonna stick it out. Yeah, exactly, then

Scott Benner 14:41 it's not uncommon. Hmm. So did did this correspond with your last kid going to college in some way?

Unknown Speaker 14:47 The twins? Yes. Well, it was it was their senior year in high school. And it was kind of the straw that broke the camel's back kind of situation. And I was like, if I don't do it now, it may not happen. I'm just gonna do it so I kind of felt bad for that or did feel bad for them because it was just senior year but I think overall it worked out well for them and

Scott Benner 15:08 Did you say something like I'm getting you something for graduation? It's extra space in the garage? Yes, exactly. We can watch whatever we want on Sundays again everybody. Super nice free. Yeah frigerators full I'm sorry for the dissolution of your marriage. I feel badly about it. But I didn't know it was good marriages

Unknown Speaker 15:29 don't end. Well, but my mind weren't great ones.

Scott Benner 15:40 Kelly, are you afraid that the next person you look at and say hey, would you like to get dinner's just like, are you not good at picking people?

Unknown Speaker 15:48 I suck at picking people. Why? What happened? Very consistent. Like I like narcissistic personalities.

Scott Benner 15:54 Tell me why. What I

Unknown Speaker 15:56 got I don't know why.

Scott Benner 16:00 So I want to try to find out together. sure that you never Googled it.

Unknown Speaker 16:09 Doing this again. So I find it irrelevant.

Scott Benner 16:11 Versus this user rate. I know what a narcissist says, Why would I be attracted to one? Oh, would you consider yourself to be strong, confident and self assured? Yes. narcissists are often attracted to strong, confident and self assured women. Oh, yeah. This may seem counterintuitive. It is important to realize that the narcissist traits of grandiosity and confidence are really a mask for deep insecurity. So they want your

Unknown Speaker 16:42 Okay, so they want to suck the life out of you.

Scott Benner 16:45 Oh, no, Kelly, that is not what this says. Now, if we're if we're believing psychology today.com, which I don't see why we shouldn't. The idea is, is that that narcissistic behavior is a facade, because they don't feel that strong. And so they want to surround themselves with people who do. It's interesting. It's interesting. Anyway, let's be honest, it's all about sex. I don't care if anybody's narcissistic or not. You don't I mean, if you're on a good schedule, you'll be okay. All right. All right. So what was it like getting diabetes at this age?

Unknown Speaker 17:31 Um, it was. It was interesting. Um, you know, it was kind of one of those things that you just do you know what I mean? Like, you don't really have a choice. I think that's the, if you want to call it the beauty of type one, you don't have a choice. But to address it head on versus type two, I think a lot of times, people talk themselves out of taking care of themselves. So you know, I kind of dove in headfirst. There wasn't a lot of education. There wasn't a podcast, there wasn't. I was on like some online forum at one point. And I think I had about an hour education at my doctor's office. I wasn't in DKA. So, you know, I actually got diagnosed at my physical. And, you know, I mentioned I'd had the Hashimotos. And I started taking medicine, and I was like, Oh, my God, I'm finally losing weight. This is so exciting. You know, and I hadn't quite put together that I was also going to the bathroom all night long and drinking a ton of water. So, you know, I kind of got diagnosed in the office, so they should have picked it up. But they didn't feel like I went in from my nurse appointment. And then that week, I lost seven pounds. So when I went back in for the follow up with a doctor, he's like, uh, you have type two diabetes. I'm like, Oh, darn. Okay. You know, I mean, I didn't know any different. And so that was for, like, a week that I thought I had type two. And I called a friend of mine, well, actually, my ex husband's in pharmaceutical sales. So he wanted me to talk to an endocrinologist that his group called on. So I called and they said, we can get you in in six months. I'm thinking, Well, we did in six months. That's not going to be very helpful. So then I called a friend of mine, whose son, and that son whose daughter goes to school with my twins, and she's an endocrinologist. So she said, well come in tomorrow. And I said, Well, I'm leaving to go out of town. So I was going out of town. I came back a week later, and that's when I saw her and the other doctor called me as I was on the airplane. And he said, You're supposed to be in my office today, but my nurse never called to tell you. So I went and saw both of them within 24 hours and had the same diagnosis from both And it was the positive ketones and I can't remember what else they use at that point. But then they ran the lab tests for the C peptide and all that stuff.

Scott Benner 20:11 So are you telling me that? You, I feel like what you said a minute ago, I want to go back to which was the because type two can impact you and kill you in the moment that it's possible to just ignore it for a while, or to not take it as seriously as you should right away, but type one demands of you that you pay attention immediately. And so you did. And so you didn't have a choice, which, you know, some people still choose to ignore it. But, but So you felt like you didn't have a choice? And is it because of that, that you have this attitude about? Or do you think it's your life experience that allows you to feel this way or because you're, you're not I mean, you're really treating it like, oh, geez, now we got to paint this room I go paint this room now.

Unknown Speaker 20:58 That's kind of how I treat light.

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Unknown Speaker 26:03 I parents taught me early on.

Scott Benner 26:06 Kelly we had we had a little bit of a an audio lag. I'm sorry, you. I heard you say that's how I treat life?

Unknown Speaker 26:12 It is yeah. I think I learned early on from my parents that there's just certain things you can control and things that you can't. And if you can't control it, there's no point in stressing and worrying over it. You just need to deal with it. It's good advice. So that's just kind of how I was raised that we don't you know, lament over things that we can't change.

Scott Benner 26:38 Do you have any kind of like psychological burdens from it? Like, I know you're dealing with it in the day, and you're taking care of it? You know, the light of day, obviously, but does it weigh on you in the back of your mind?

Unknown Speaker 26:54 Um, not terribly not as much as it probably should. You know, this morning at 5am. I had 41 double arrows down. That was a little scary. But no, I mean, I live alone now because my boys just set for college. And that stresses my circle out a lot. So I'm getting a service dog. Because that will make everybody feel better. I tend to have my lows more in the evenings at night when I'm home alone because I'm real active in the daytime.

Scott Benner 27:25 Buying a dog you don't want so that your kids don't worry.

Unknown Speaker 27:29 It's my mom and my best friend. No, I want a dog. I love dogs. I love them. It's a great excuse to have one. Yeah. But um, no, I just I don't worry about it probably as much as I should. I mean, I'm I don't know. I mean, it is what it is, I guess, yellow every night. No, but I played like yesterday, I played two tennis matches, and one at 10 in the morning. And then one. You know, it finished almost 930 last night and it was an hour, two and a half hour match. So, you know, I knew it was probably gonna go low. And then I didn't and I was like, Oh, just as great. I woke up it was at like 112 and five this morning. I'm like, Oh, perfect. And I got back in bed. And then within a few minutes, it was like 44 double arrows and like

Scott Benner 28:16 maybe maybe you woke up. Maybe your body felt that fall before the CGM could catch it. That has been happening a little bit lately. Yeah. So you're happening to you're falling faster? Yeah. What's your you wanna say?

Unknown Speaker 28:29 6.5?

Scott Benner 28:31 And how about your variability? What do you shoot for? What's your range?

Unknown Speaker 28:35 Well, my time range is not as good as I would like it to be, but it's like 70 to 130 is pretty much my goal. But I do have like a 40 point swing, it seems like and I'd like that to be a smaller number

Scott Benner 28:50 you see 170 more often than you want.

Unknown Speaker 28:55 Is that data is just like on the graphs, you know, it tells you like your standard deviation. Mine's like 40 something. Oh,

Scott Benner 29:02 okay. Yeah. So you're bouncing around a little bit. Yeah. So why do you think that is?

Unknown Speaker 29:10 Because I don't pay quite as much attention as I should.

Scott Benner 29:14 Does that mean you don't Pre-Bolus your meals or does that mean as it's going up? You don't do anything about it?

Unknown Speaker 29:20 Um, I Pre-Bolus not always as much as I should. It seems like when I do Pre-Bolus Like I've been working on that more because I'm like, oh get on the podcast is gonna ask if I'm Pre-Bolus and then I'll drop low in the My mom's like, Oh my God, what's going on? And I'm like, Well, you know what, it just doesn't always work the way you want it to how long? Oh, it'll go like into like the 50s or 60s. And you know, which isn't the end of the world.

Scott Benner 29:49 So when you so when you Pre-Bolus a meal and you get into the 50s or 60s What like while you were getting to eat Do you ever spike after that?

Unknown Speaker 30:00 Um, think about it. Um, no, not really. I mean, it keeps me lower. I haven't done the Basal tests you tell us we should do because I'm on the control IQ and I don't know how to Basal tests on it.

Scott Benner 30:14 Well, you can you just shut the control IQ part off and just use it like a regular pump. Oh, yeah, probably. So yeah. And then just do it. We just did this, Martin. So, Kelly, do you mind me telling you a story here?

Unknown Speaker 30:27 Yes. I'd love to hear sir.

Scott Benner 30:28 Let me just drink a little water. So Arden left for the college last week. And how are you? I mean, it was easier than when I took my son. I think I had some perspective. I knew what it was going to feel like. And I almost cried in the shower on the first day in the hotel when we dropped her because we stayed a couple of days, because she's so far away. Right? And I didn't I sucked it back in. And I thought I'll just save this for the day we leave, you know. And then when we were standing in a room saying goodbye to her, I, I cried then, and I tried to tell her something. But every time I tried to speak I would cry. So I just I just sort of said to her, I was hugging her. And I said I want to tell you something, but I can't because I can't stop crying. So I just so we we left and my my biggest battle was as we drove away, I fought the um, I got a real big adrenaline kick. Like I was doing the wrong thing. Do you know what I mean? Like I should go get her or stay with her like that feeling. And then I had to fight through that adrenaline and we had two cars. And my son was with me and my wife Kelly was driving the other car. And, and Cole was driving. And he's like, are you alright? And I said, Have you ever been so angry? You've cried? And he said yes. And I go, I'm not angry. But I'm not sad at the moment either. Like, I'm literally like fighting off that adrenaline feeling like I'm so jacked up. I'm upset. Oh, he's like, he's like what would fix it? I was like, it would fix it if you would drive back there. And we would live with Arden. Or I was like, just keep going. But it lasted for a little while and then you know it passed. We talked to her last night. She's doing terrific. But the reason I bring all this up is because and I'll talk about it in another episode. But we figured something out about Arden's digestion. I don't know why, um, let me clear my throat. I apologize. We figured something out about Arden's digestion. But we only figured it out a few weeks before she left for school. And it was something she had been struggling with for years. And the thing we did, which again I'll talk about in another episode probably will come up long before you hear this one. It changed her insulin needs significantly. And so over the month that we were doing this thing I was seeing her insulin needs change seeing her insulin needs change. And as her stomach was kind of healing. This is my expectation. Her insulin needs became less and less, I'm assuming because food was flowing through her more efficiently. So by the time we got to the trip to Georgia, which took 14 hours in the car, she was on the lower side the day we drove down. But we were very sedentary. Like you know, obviously sitting still and you know car rides, generally long haul rides, people's blood sugars go up. Right? I remember thinking on the way down it's so weird that her blood sugar's are good in this car ride like this. Because I thought for sure we were gonna have to give her more insulin for the ride. So we get there. And then that overnight, her blood sugars are a little low. We had trouble bringing them up. The next day. They were on the low side that night. She goes to bed for the first time in her dorm room. And you have to imagine all I wanted for was to not have problems with her diabetes on the first day, you know, right, right. I just I didn't want that for we're only up the block in a hotel. And her blood sugar got low and stayed low all night long. Like we were up texting all night, like drink this, do that to the point where at like four o'clock, she's like, why is this happening? And I said I think we need to like reassess all of your settings. Because you just don't seem like you need this insulin anymore. So the next day we got up. I thought about it for a while it texted Jenny I was like this is what I'm thinking does this make sense? And she's like it does Okay, and I picked a static Basal rate, I ordinance looping again with with Omni pod, I opened the loop and created just a regular insulin pump situation. I put her Basal lower than I thought it would even need. And then I watched it for the morning and Arden throughout that morning through, you know, traveling around shopping at Target for things, you know, etc, getting a room, you know, buying extra stuff for her room. Her blood sugar was very, very steady at 110 with a point five an hour Basal rate. Wow, the two days before that Arden's Basal rate during the day was 1.1. So I was like, Okay, I'm gonna guess that somewhere in here, point six, maybe would be a good basil for her because she was holding it 110 I don't want her to sit at 110, I might make a point 6.7 In that range somewhere. And then we we picked, I looked at her insulin to carb ratio, which is aggressive at four and a half, four and a half, yeah, four and a half carbs for each unit. And I was like, Well, this is probably wrong, too. So I just changed it to 10. And I said, we're going to Bolus a couple of meals and see what happens. The part that, like was bizarre was that after we had a higher blood sugar that we had to correct, we corrected it, you know, to see what we thought maybe her insulin sensitivity was. So I think she was like 160 or so. And I was like, give yourself a unit, we're just gonna let this play out for the next three hours. Like I don't care what your blood sugar does, I want to watch it. And I ended up setting her insulin sensitivity at 70, from four from 42. So now all of a sudden, I've got these settings, point five and our one unit per 10 carbs 70 insulin sensitivity instead of 42. And I was like, alright, let's look at what happened here. So we did another meal Bolus. It didn't work, we needed a correction. I figured the I took the the amount that that the correction use to get our level again. At that point, I think I closed the loop, I let the loop fix a a meal rise that I took the amount of insulin the loop used to correct the meal rise. And I you know, reverse engineered it to get it into her insulin to carb ratio. And I ended up making her insulin to carb ratio, something like I forget what it is right now. Seven, six or seven in that range. And then her blood sugar for the next three days was insanely good. Super stable. No lows, overnight. Terrific. But but look at how much it changed just because foods not sitting in her stomach anymore. After she eats, and she's going to the bathroom on a better schedule.

Unknown Speaker 38:07 That's interesting, because I do have some digestion issues. So that very well could play a part. I need to look into that. Yeah.

Scott Benner 38:15 So what we ended up doing for all the things and like I said, I'll make an episode about it. But just to bring it all into context here. I won't give you the big story. But what ended up happening was, is that Arden stomach hurt for years, like she's always like, my stomach hurts. My stomach hurts. She started having these weird like, I can't eat this. I don't want that I'm hungry today. I'm not hungry. That's my son. Yeah, go into the bathroom intermittently a couple times a week if she's lucky. Like that kind of stuff. So we tried going like the normal medicine. Well, first of all, in fairness. We tested and did everything under the sun that a person with autoimmune diseases would do. Nothing came back positive. So eventually we go kind of the normal medicine route. We take her to a gastro, he looks down on her stomach and says, you know, there's still food here from last night. And I was like, oh, geez, and he goes and there's a lot of inflammation in her stomach. And he took some biopsies and there was no h pylori, which I guess is something they look for. And he looks at us and says here and he starts giving us all this medication. This is for the pain. This is for this that I'm like, my, like my 18 year old is gonna take like three medications for stomach pain. I'm like, What the hell are we doing? You know, like, this doesn't make any sense. And then he says, she has gastroparesis. And I go and I go, No, she doesn't. Like I see her insulin. I know how her insulin works. I know what happens when you have gastroparesis. This is not that. And he goes well, that's a it's a term we use. And I said well in the diabetes community, it's not working throw around. Okay. I was like, yeah. And he goes, this guy knows nothing about diabetes. He goes, Well, she could have it. And I was like, well, she doesn't because because she doesn't like I'm like, I, I've never once given Arden insulin, and she's crashed because Her stomach's not digesting. I'm like, she, her digestion is slow. She has gastritis right now, which she's probably had for years. And I was like, and we need to heal her stomach to get past this. And he goes, Well, I'm here, do this gastro precess diet, which was like, don't eat anything wrong. Nothing was skin. No meat, like, you know, nothing that digests slowly. And he goes, and this will heal her stomach over time. And I was like, how much time and you know, so we start doing it. A month before Arden's gonna leave for college, when she's on this restrictive diet, she's absolutely miserable. It is not fixing anything that I can tell. And at least not fast enough, because she's gonna leave for school in a month. And I'm like, all I'm saying to myself is there is no way that given the choice between this diet and stomach pain, Arden's gonna choose stomach pain, like she's not going to do this, if she's not with us, you know, right. So we're like, a week or so into this restrictive diet, and she just wakes up, and she obviously was beginning to feel a little better because she craved a hamburger. And so she was hungry. She's like that I would love a cheeseburger. And I was like, okay. If you do that, that's something for me. And so we talked about a little bit, we drove to a health food store. And I said to the lovely lady there, I want some digestive enzymes, something that helped break my daughter's food down. And she gave me something and I was like, great, and, and we laughed, and I said, Alright, eat your cheeseburger. Take two of these pills. She takes two of the pills, eats her cheeseburger, blood sugar never goes over 110 It was five guys. It was fries. It was I love five guys. It was a milkshake. And it was a cheeseburger. She ate it all her blood sugar didn't spike. And better than that. Her stomach didn't hurt. Interesting. And the next day, she went to the bathroom. Now she got very annoyed with me asking her everyday if she had pooped that she did not like, Dad, I am not telling you if I pooped, blah, blah, blah, etc.

Unknown Speaker 42:19 I can tell from your blood sugar.

Scott Benner 42:21 No, don't worry, I know. And so she, she, I have to basically keep after to take these pills for about a week. Well, about a week into it. She goes to have a meal. And she says to me, Hey, where are those digestive enzymes at? And I said to my wife, I was like, Oh, this is working? Like she's she knows it's working because she's asking for them versus us being like, hey, don't forget your eating take these. Before you knew it, she bought herself a pillowcase and started traveling with them.

Unknown Speaker 42:51 We are in advanced does she take them? Just take some

Scott Benner 42:54 washes even. Okay, just pops it in. Or afterwards. Take them right after it's fine. Okay, close. Yeah. So. So then, you know, a week or two went out on like, you know, you're still not going to the bathroom as much as I want you to. And we added magnesium oxide. Is that right? Hold on a second.

Unknown Speaker 43:11 There's a couple that you can do. Yeah,

Scott Benner 43:14 but there's not though if you talk to the Russian lady at the health food store, so hello. So yeah, so the woman's like, you'll take magnesium. She looks at Arden because now you know, Arden went from the first time we went to the health food store while we were on our way to the cheeseburger. Or Arden's like I'm staying in the car. I don't care about this. The next time we went back, she's like, I'm gonna come in with you. I was like, Okay, so now we're talking with the lady. And she says, You're not You're not eliminating I forget how she said it. This is my Russian accent. I don't even know she's Russian. She had a really crazy accent. She's like, you're not eliminating and ordering goes. Not every day. She goes, we will do magnesium. And I said, Oh, we have some at home. And she was it has to be oxide. And I was like, I don't know if I have that. So I'll just buy more. And I didn't so we had tried magnesium in the past, but we tried the wrong blend of it or something like that. Yeah, what do I know about magnesium? So I said, I'm like, Alright, take one of these at night. See what happens. And she started going to the bathroom on a better schedule. And so digestive enzymes. I'm so sorry. I can't clear my throat today. Digestive enzymes for the for the her digestion, this magnesium oxide to make poopies and everything is just rolling along now.

Unknown Speaker 44:45 And she needs less insulin,

Scott Benner 44:46 significantly less insulin. Thank you interesting. Half I mean her her insulin sensitivity from 43 to 70. I might adjust it a little. I'm watching it today. And today I'm not certain If we excuse me, I'm not certain if we have I'm looking at her blood sugar. You just heard Nightscout there for a second. I'm not sure if we have a bad site right now. Or if the settings need a little bit of adjustment now that classes have begun, right? Because I think she's getting she's got a little bit of that school adrenalin enter. So I'm looking at that. She just had a pretty big meal. And her blood sugar staying super stable around 140. So I think I think we need to move a couple of things at them. Sorry. Give me a second. So I think we might be making some adjustments. But anyway, the digestion thing is huge.

Unknown Speaker 45:54 Yeah, that's interesting. Okay, well, and I take his Olympic.

Scott Benner 45:57 Okay, does that keep it moving? or slow it down? That slows

Unknown Speaker 46:01 it down? Yeah,

Scott Benner 46:06 why are you taking him out?

Unknown Speaker 46:08 Well, when I was first diagnosed, I don't know when I started it. It's been like, two years ago, maybe my ANC was like in the low 70s. And I just could not get it lower. And I gained weight. And I was having a hard time getting, you know, like, nothing was moving the scale. And so my doctor put me on it. And it was, it was hard to titrate up, I will tell you, it made me really sick. And now knowing what I know, it was actually gastroparesis type symptoms I was having. But I didn't really know that at the time. And yeah, I mean, it curbs my appetite. So I'm not hungry. And I just take it once a week. I don't even really think about it. It's probably not I don't know if it's a bad thing to take long term. But I mean, maybe once these lower and I'm not hungry, and I lost weight. So it kind of makes me feel happy. But

Scott Benner 47:00 when the doctor brought it up was were they saying things like insulin resistant?

Unknown Speaker 47:06 No, they didn't say any of that. He just said, you know, we have a medication we give to type twos. We can try it. He said it helps with with weight loss and will lower your agency. We didn't call it insulin resistance.

Scott Benner 47:20 Instead of metformin Was that ever said?

Unknown Speaker 47:23 No. They tried to put me in that form in that like first week that I was diagnosed, you know, and then when they figured out it was type one and not type two, they they took it away, okay, because

Scott Benner 47:33 the reason I asked is because while this was all going on with Arden you know, we've been talking with Addy, who's the lady who did the thyroid episode with me, who is Arden's endo for I don't know. She's Ardens endo for a lot of stuff. Although technically Ardens endo is the Children's Hospital. But anyway. So we're talking to Addy and she's like, Listen, you know, if this next thing you try here with her stomach doesn't help. I think we should put her on Metformin. And I was like, really? And she goes, Yeah, I'm like wine, because she's like, well, so Arden also had this, like really bad acne. Like, like for years that she just couldn't make anything. Like she just couldn't get rid of it. Right. And what ended up helping that was getting the spelling which we're going to talk about on the podcast. Okay, so we had gotten down to being like this ardonagh of PCOS like what's going

Unknown Speaker 48:36 on? My friend's daughter has that form and really helped her. Okay,

Scott Benner 48:41 so we began using a vast a tall it's a over the counter. Drug, not drug it's a powder. I don't know what the hell, okay. And she uses like, a scoop of it a day. dissolve it in water or another drink. And you drink it.

Unknown Speaker 49:07 And what's it for?

Scott Benner 49:09 Listen to me, Kelly. I don't know. I was just told I was told. Try this, right. And I'm like, Okay, so I'm trying to find what's in it right now for you because it's a very simple

Unknown Speaker 49:21 and if it was for her acne or was for we don't know why we?

Scott Benner 49:25 Well, it was because we had gone through everything else that could possibly be wrong with art and in the world. And we all just landed on it seems like she has a hormonal imbalance, right? Because that nothing else made sense. Arden's periods were 11 or 12 days long. She'd get a two day break in between them. The her bleeding was incredibly heavy. She'd get a bloody nose out of nowhere like her to hurt her acne was terrible. She went on a pill the pill not upheld the pill and it did not touch the acne. She gained weight because of the pill. It did shorten her periods and stop the nosebleeds.

Unknown Speaker 50:08 So we wrote the Gardasil vaccine.

Scott Benner 50:11 No, we didn't give that to her. Okay. That's the one for HPV. Yeah, she didn't have that one.

Unknown Speaker 50:20 That one can cause some hormonal issues. Yeah. We told her

Scott Benner 50:23 we just had no oral sex. No, he didn't say just just didn't do it. And so So anyway, so you know, before we try Metformin, let's try this over the counter thing this Avast at all. So she's on it for a month, and things are looking better. And then all of a sudden, six weeks into it, she gets her first, you know, she gets her period. And we're like, all of us have like, our fingers crossed, and her period is shorter than it usually is, had stopped. And now we're just watching it like God, it's not gonna start again, right, and it didn't start again. And then the next month, her period was a regular amount of time, and the nosebleed stop. And then the third month, her period was the regular amount of time. And we were like, Holy hell, this powder is it seems to have like, fixed her. I don't even know another way to say it really? Like, it fixed her. Yeah, and her and her acne started to trend in the right direction. We're like, Alright, cool. Let's keep doing this. But her stomach still hurt. Like, none of that was going away. And you know, and that's tough. Because when you have these problems, you're like, Oh my God, look, they're all like, so many of the problems are getting better. But then this part didn't like holy shit. Just like Oh, come on. Like, really? You know what I mean? So that's when we did the endoscopy to look in her stomach. avasta tall. Am I saying that right? I should say it right of acid tall. Has my oh. Oh God in us the tall in it. And D Chiro in a subtle so it's m y O dash N I O S it O L and D dash c h I r O dash i n o s i t Oh, that's what these two things are. I couldn't be okay, our house we call it uterus water. We also call it lady water. And her friends caught her vagina juice. So sometimes the her friends would pick up her glass and drink and and be like, Yo, my, my uterus water is in there. And they're like, I want my uterus to be better too. And you know, they just anyway, so who knows this thing, this powder just straightened Arden's life out 85% And then the enzymes at the meal, seemed like it was the rest of it and the magnesium to make the poopy. So

Unknown Speaker 53:06 I'm on some of that for myself. And for one of my kids who's having still has issues undiagnosed. So my boys,

Scott Benner 53:14 when this starts with her, I think, you know, gosh, a lot of what happens to Arden with food in the bathroom. I've noticed that through my life as well. So in the beginning, when she was taking the enzymes, I'm like, Look, I'll take them with you. And I've had to take for years, I've had to take fiber to kind of help my

Unknown Speaker 53:35 process. I remember hearing about that because you couldn't get it during COVID

Scott Benner 53:39 and I don't need the fiber now if I do the enzymes. Interesting. Okay. Okay, so I was like, alright, so on the ride home from college, my son and I were talking about it, my son goes, I'll try that. And I was like, okay, so I went out yesterday and bought him a bunch of enzymes and I said here just take take these when you eat

Unknown Speaker 53:58 or email me a picture of it when we get off so I know exactly which ones to go by.

Scott Benner 54:01 I got one. So I got one from our local health food store, which I think is just made by them. And I've also used the one by pure pure makes them right okay. And those are the only two that I've seen so far. And they've both poor encapsulations digestive enzymes Ultra. I started using and then I just decided if my daughter is going to use these other ones I'll just use those so I'm just using the ones from hers and I don't know if everybody has like a black forest acres health food store near them, but I'm using their their in house product. Gotcha. Okay, called Super Zaanse.

Unknown Speaker 54:45 And it was magnesium oxide, not the Yes, calcium or whatever that one is.

Scott Benner 54:49 And that's just once a day. And I hadn't taken it at all. I was like, I don't need that. But yesterday I was like, whatever. I'm gonna do everything she's doing so I know how it's impacting her. And I did notice at work yesterday with some exuberates.

Unknown Speaker 55:07 So you take it at night or in the morning,

Scott Benner 55:09 you're gonna have to figure that out yourself. Kelly, I'm not a doctor, nothing.

Unknown Speaker 55:13 Oh, now you're not

Scott Benner 55:15 telling you what I'm doing. I can't give you different now I don't know, I

Unknown Speaker 55:18 see you taking it day or night.

Scott Benner 55:20 I took it during the day yesterday, and it made me it made me say to myself tomorrow, I'm going to take it at night. Some of the traits and I when I go to bed instead of during the day today, I'm on it, I'm on it. But anyway, here's the real thing, right? Like all this, you hear us talking about on all the time, how you're balancing, you know, the axon to actually the insulin against the impact of the carbs. And the impact of the carbs really means the carbs that are in your body. As your body is leeching out, you know, the sugar and it's going into your, into your bloodstream. That that availability, that food availability, has a lot to do with how long it's in your stomach and how long it digests, right? Think about pizza, and or fat rise or all that stuff? Like what would happen if food just moved through you more quickly? And is there? And this is the first time on to sound like a hippie, I think but is there a relationship between diabetes or thyroid stuff or whatever? And how long your foods taken to get out of you? Right? Right. So I don't want to cause a run on digestive enzymes. But for 20 bucks. It's worth trying. Absolutely. Yeah. So I got all right over here trying to fix the my daughter, and maybe somebody else would benefit from it too.

Unknown Speaker 56:41 Absolutely. Well, I mean, I've been going down this rabbit trail for five or six years with one of my boys. And then finally they said he had SIBO, which is small intestinal bacterial overgrowth, and that was the functional medicine doctor and the GI doctor came to the same conclusion at same time or pretty close. So one was doing alternative med stuff on him and he was starting to feel better. By the time the GI doctor said it was SIBO. And they give him the antibiotic things called Zafran. And so to the x xi, or XYF, five Arn or something. Anyway, it stays contained in the colon, or in the intestines, all the way through, it doesn't leach out into your body. And that that's given him a little relief. But gluten and dairy and soy are horrible for him and gluten and dairy for my daughter. So maybe the digestive enzymes will help.

Scott Benner 57:38 Which we were in Georgia for five days, maybe. So we were supposed to say we I think we got down there on Tuesday night. We all stayed in the hotel Wednesday, we moved on into a room Wednesday night was the first night Arden stayed in her dorm. We stayed Wednesday night, Thursday night, Friday night, we were gonna stay Saturday night and then go home Sunday. But we said kind of realized on Saturday afternoon, like we're going to get up early in the morning. And we're not going to sear in early in the morning. And, and she's got homework tonight and everything already. So we're not going to see her tonight. So we said goodbye to her on Saturday afternoon. And we got back to the hotel and my wife's like, I need to get out of here. Yes, like I can't just sit here with her being three blocks away. And I'm not going to talk to her and I'm not going to see her. She's like I need this process to start I need to leave. So we just jumped in the car and went but my point is is that I was there like four or five nights. And my I need to find a better word for this right? But the process that food goes through me while I'm traveling is not great. And so when I travel or I fly, I'm always like just dosing myself with fiber to keep everything going.

Unknown Speaker 58:52 And most people have that where it's I don't know what the word is. They call it traveler's diarrhea, but that's kind of the opposite. But a lot of people just slow down when they're not home. Nothing works, right? Yeah,

Scott Benner 59:01 well, I and it's definitely the opposite for me. Although I would love to call this episode traveler's diarrhea, but I don't think I can and but let's keep that in mind for future. And so this time I was just like screw it. I'm taking these enzymes when I eat and I am not going to take any fiber and I'm just going to see what happens. And it was was 150% better than it's ever been for me. And I was also not restrictive with how I ate which I'm usually when I travel I stay really light I stay very low carb I eat more like like animal protein stuff like that. And I didn't do that like I had French toast at breakfast one morning with like syrup and powdered sugar on it has like this diabetes group right. Martin had the same breakfast by the way we My mouth

Unknown Speaker 59:50 is watering. Oh no, I eat it all the time. No problems. Just saying you're making a mouthful. I

Scott Benner 59:54 scraped the powdered sugar off that I have to be honest. I don't know what you people are doing in the south but it was like It looked like somebody threw it on with like a fist. That's like they grabbed a handful. And I was like, I am not eating this. And I scraped it off. But, but my point is, I was fine the whole way through. And so was art. And after we just did her settings, so it was her blood sugar. I'll tell you right now, even though I say it constantly, I am doubling down on it settings. Everything is settings. Everything, setting, setting, setting, setting settings, your settings have to be right. Don't go along going. I don't know why I'm getting low. Like Kelly, you shouldn't be getting low after you play tennis. Your settings aren't right. Yeah, tennis

Unknown Speaker 1:00:34 is really hard for me because like, one match, I think it was not yesterday, but the day before I played, and I was high the entire match. The next match I played the next morning. Hi, I missed the entire match. Then that evening, lo the entire match, you know, obviously because I'd already played the two other matches. But like some matches, I'm high some matches. I'm low. And it depends on the heat and the you know how hydrated I am. There's so many factors, aside from just my settings that go into it. But you know, as soon as I think I have it figured out, then something slightly changes like the weather in Oklahoma. But

Scott Benner 1:01:13 Well, I'll tell you, I'm going to share a text I sent to Arden this afternoon. So actually, so like I said, she's been a little high the last like 24 hours at more like the 130s like very stable 130. And so I said to her this morning, Hey, good morning, I said, the pod is struggling to bring your blood sugar down. So let's try and override to get you through your classes. And we did that we moved on loop we made her override like 130% targets of 90 for four hours. It held her right around 120 during her class. And I said, I think now Mike, I think the site's weird. Let's make a Bolus, like let's just throw in insulin to see what happens. She pushes into units. I don't see anything happen. I'm like, Alright, so maybe it's the site. Or maybe it's her basil, you know, is a little weak. Or maybe for instance, sensitivity is a little weak. Like maybe it was great while we were adjusting it in those first couple of days. But now she's getting up but she's going to class, we're going to need to be a little more aggressive. So I sent her this Texas that if the Bolus works well, she just made a meal Bolus. I said, we're going to make adjustments to your insulin sensitivity. If it doesn't, I'm going to think about maybe the site needs to be changed. But that seems odd because it's only been on for about 48 hours. Or maybe you're dehydrated because it's hot there. So like those are the three things that I'm thinking about right now, as I'm watching what's happening to her blood sugar.

Unknown Speaker 1:02:41 You can it's amazing what hydration does, especially when it's so humid here like right now we're only 80 degrees, but the humidity is still really high. So even I played a match when it was 104 and there were women dropping like flies. I'm like I don't know my pancreas doesn't work for my my cooling systems really good. You know, but I was very hydrated. I don't have any problems, but that humidity will suck it right out of you.

Scott Benner 1:03:06 I wonder how much of your hyperthyroidism has to do with you feeling doing well with the heat? Or if it doesn't know, I don't know. I don't know I I am as close to being an autoimmune scientist. Now as I've ever been in my life. I'm so I know.

Unknown Speaker 1:03:22 That's why I was so excited to talk to him like he's gonna help me.

Scott Benner 1:03:26 Listen, we've been chatting away about things we were never going to talk about to do you have questions or things you want to talk about?

Unknown Speaker 1:03:32 No, actually, I was interested in Yeah, kind of your thoughts on the thyroid. And I'm happy to hear about all this digestive stuff, because I think I can think of three people in my immediate clan that are going to be looking at this. So no, that's fantastic.

Scott Benner 1:03:47 When I was like eight or nine years old, I can remember I used to go out with my cousins a lot. And my uncle owned a sheetmetal shop that many years later I ended up working in that was maybe 20 minutes or so from his home. And so he was aware of a pizza joint around the sheetmetal shop that they like. So if I stayed at my cousin's house, we would often drive this 20 minutes to this pizza place, drive past my uncle shop, to the pizza place, have pizza. And inevitably, we'd leave there. And I'd be like, I need you to stop I need to use the bathroom. And so we would stop at his place. A sheet metal shop in the middle of the night, which was creepy as hell. And I'd wander through and use this dirty filthy oh my god, just filthy restroom. And, and then we'd make it to 20 minutes back to his to his house, and then I wouldn't feel good all night. And I remember even as a child being like, my cousin goes into the bathroom. And he's back out in a few minutes. And he's okay. Like, why is like why doesn't that happen for me? You know, and I just struggled my whole life with it. And it just never. It never got better. I think that part of my eating, like the weird way to eat is something that I've adapted to not not to not feeling sick, right, you know, without even knowing it, because all these things we talked about now and, you know, in a modern society like growing up in the 80s, like you just, you were Scott who was in the bathroom, you know what I mean? Like there was nobody was like, I wonder what's wrong with them. There's like, this guy can't handle pizza. It wasn't me. Like, it wasn't any bigger thoughts than that. And so, I mean, I don't know, like, it's had it's had a bad effect on my life. Because if I try to eat more food, that's what my body seems to want. But then I just gained weight, even though I'm not eating very much. And so maybe everything's just sitting in me too long is it's Yeah, is what I'm wondering. So I'm doing the same thing Arden's doing so I'm interested to see what happens to me as well.

Unknown Speaker 1:05:54 So what you mentioned that Foreman So did they put her on Metformin?

Scott Benner 1:05:57 No, because the basketball works so well, because that works so well. She didn't need them that came off the table. That idea that was our next more aggressive step if the basketball didn't help a basketball reviews are insane. Like there are some people take it and go, Look, what was wrong with me didn't change. This didn't help me. Fair enough. But there are people who say, women, I can't get pregnant. I take this stuff. And two months later, I'm pregnant. Like these people have been these people been trying to have a baby for years, and they start taking this thing and all of a sudden, pregnant.

Unknown Speaker 1:06:33 Interesting. Well, I don't have a uterus or ovaries so that's probably not going to be the magic

Scott Benner 1:06:37 potion to lose them. Kelly, where are they?

Unknown Speaker 1:06:40 I did yeah, no, I had them all removed at 41. Actually, what why? I had, well didn't know I had endometriosis. Oddly, because I mean, I got pregnant super easily with all four kids. But was having really bad pain and really heavy bleeding. And so when they went in to do just basic hysterectomy, he said, my ovaries were all strangulated. With endometrial, you know, whatever, endometriosis. So they took it all.

Scott Benner 1:07:12 You know, earlier, when I asked if your daughter's lupus had changed over the years, it was a question based on how many times doctors have said to me while talking about my daughter, you know, girls this age just sometimes struggle. And I'm like, that's a medical opinion. Girls this age just sometimes struggle. What do you mean? You don't mean? Like are we see this? Girls who had stomach pain after they start getting their periods? Blah, blah, blah. You know, sometimes they grow out of it.

Unknown Speaker 1:07:47 That's what they told me about my son. He was throwing up everything he ate. And they're like, what some kids just throw up? And like, that's not Yeah, no, no, that's that's not

Scott Benner 1:08:00 the land. None of those children were vomiting while we were walking around, like, what do you tell? Yeah, it

Unknown Speaker 1:08:04 was? Yeah. So they're like, well, some of them I've had kids like this, they just grow out of it when they get to college. Well, that hasn't happened. Either.

Scott Benner 1:08:12 We're or maybe they just find a way to eat around everything that's bothering them. And then we go to the next simple answer, which is like, oh, you can't handle dairy. Or you can't because listen, I can easily tell you that there have been times my life you could have easily said to me, Scott can't handle dairy. There are easily times my life. You could have said that to me. Except I can. Yeah, I just like, Yeah, my body's just not doing something it should do. Yeah, you know, so

Unknown Speaker 1:08:42 we did do the stomach emptying studies on my son, and that did not yield any slowness, according to them, but I still think digestive enzymes might be

Scott Benner 1:08:52 they wanted to do that test. And she was supposed to do it a week before school. And I said I do she does not need this test. And my wife said Come on, let's just do it. I was like, I She doesn't need it. And actually, I talked to Jenny and Jenny's I don't see why in the world. Arden would take this test. Even Jenny's like Arden does not have gastroparesis, but not get your braces like it's thought of in the diabetes community just in, in the clinical sense of the word. So everybody who's around diabetes thinks gastroparesis. And they hear the word and they think one thing but it has just a very, like a very technical term. It's a disease in which your stomach can empty itself of food in a normal fashion. That's right. That's what gastroparesis is. And you can have that without having diabetes. Correct. If you if you have people who have diabetes sometimes have out of control blood sugars, which make this happen to them quickly. Or more significantly than, you know what you see in the normal population from my understanding. And so the guy was just using the term I'm with Arden like he uses it with anybody. Oh, Arden has a slowing of her digestion. We call that gastroparesis. And, and he didn't even realize I think the the impact that the word would have on us like when he said it out loud. I was like, wait,

Unknown Speaker 1:10:18 what? Like no, right? Like fear. Yeah, I

Scott Benner 1:10:21 gotta tell you if, if Arden has guessed Her price is caused by diabetes. I'm gonna I'm moving everyone in the garage and turning the car on. Like, I give the backup Kelly unit. Like, I don't sleep. I keep her blood sugar amazing. Like her agency and her variability and everything. It was like, like, if that's I just give up? If that's it. It's so I was like, that's not right. And I talked to Jenny, Jenny, I talked privately about it a bunch. And she's like, I can't see it. She's like, I just, I don't see how that could be true. And so ignoring the doctor skipping the very expensive tests he wanted to take, and just going to the health food store and buying $30 worth of pills, straightened her out. And I don't mean like over time, I mean, immediately. Yeah. So

Unknown Speaker 1:11:10 I'm gonna buy it. My son's getting it this weekend. And so it's my daughter. So why I'm going to start it

Scott Benner 1:11:15 to give it a well, that's why I did it originally. Because there's like, I have enough of this concern. I also started thinking that I'm probably more like you. Like, you know, like, if there's nothing you can do about it. Just shut up and keep going. Right, great. Well, that thing. And I wondered, I didn't ignore all this stuff. Because was Arden and look at all the things we figured out. But when it was me, I was like, you know, don't be a baby Scott. Just keep going. Right? It's like one

Unknown Speaker 1:11:43 night is hard. Yeah. Cuz when it's your kids, I mean, you've put so much time and effort into them and you kind of fall on that backburner to a degree. I'm not in a bad way. But I mean, I just do it. I mean, I don't do it as well as you do. And if it were my kid, I'd like to think I would do a better job. But now that everybody's gone, I'm like, Okay, it's time for mom to get serious. Not that mean, six fives not a bad day when see. But yeah, I know, it could be better. So lovely.

Scott Benner 1:12:10 You're doing great. I think you just have you probably have a couple of settings that are slightly off that are causing you're bouncing around. And then that's what I would imagine is your issue. And you know, it sounds like even when you Pre-Bolus you might even be Pre-Bolus in too long. So So I think your settings are just a little skewed somewhere.

Unknown Speaker 1:12:31 So I need to get a hold of Jenny.

Scott Benner 1:12:33 Just dial it in. I mean, I could do it. But I'm very busy going.

Unknown Speaker 1:12:39 Busy being an empty nester. And yeah,

Scott Benner 1:12:41 I'm also not a doctor, it would be very inappropriate if I helped you with that.

Unknown Speaker 1:12:44 Well, you know, it's all good. It's all we take it all with a grain,

Scott Benner 1:12:47 although I fixed Ardennes while I was walking around target. And I was pretty impressed with myself. Like, everyone's going crazy. And I'm like, I'm yelling to Kelly. I'm like, I forget what I said to her. I said something like I was figuring out her. I was trying to figure out her. The insulin sensitivity assay, take this number divided by 1800. Real quick. Why I might just do it. Because

Unknown Speaker 1:13:09 I knew the answers. Yeah, I need to dive in and learn a little bit more about it. Because I like I said, I had an hour's worth of training. I've learned more in the podcast than anywhere else. And honestly, the first time I listen to the podcast,

Scott Benner 1:13:24 I didn't love it. Yeah, I'm hard.

Unknown Speaker 1:13:27 No, it wasn't God, it wasn't you. It was an I popped on. Someone said, Oh, listen to the juicebox. So I got on a juice box. And it was a story like this one. And I'm like, Okay, I'm gonna have to listen through hours and hours and pick the little bits and pieces out. And I need information in order to mean and then I realized that there was the, you know, pro tips and you know, you were developing those maybe when I started. But anyway, that is huge, because you can get in and get really good MIDI information. And then listen to the stories when you're on your walk and you aren't needing to take notes. You can just, you know, take the tidbits with you. And so it's a really nice balance. But you know, this wasn't available when I started,

Scott Benner 1:14:09 right. Well, listen, I'm

Unknown Speaker 1:14:10 glad when I was.

Scott Benner 1:14:12 I'm very glad to hear you talk about that way. Because when it started for me, I didn't expect that it would be what it is now. So I was just telling stories about how we handle things. And then people were like, you know, I've been listening to the podcast and my one sees going down. Right? It's like, oh, it's because everything I do is in there somewhere.

Unknown Speaker 1:14:31 Right there. I didn't start at the beginning. I started at the end, you know, kind of whatever was current was what I was listening to so I didn't even get the beginning stuff. It was in my cousin. When I got diagnosed type one. I was a type one for five years, maybe? Yeah, probably about five years. And my cousin my first cousin, her son was diagnosed. And so of course, you know, she mainly calls me and you know, you We start going through all the stuff. And that's when I first heard the podcast and I told her Oh, you have to listen. And I called the back said, No, don't do not go listen. Because I knew it was gonna overwhelm her because she was very overwhelmed. But then once I figured it out, I messaged her back, I'm like, Okay, now I send people the little cheat sheet that you guys have, it tells all the episodes.

Scott Benner 1:15:24 And we and Jenny and I are doing that bowl beginning series right now to which I'm starting to see working for people who are newly diagnosed. So what what ended up happening is around 200 episodes, as I was approaching them, I was like, I can't expect people to listen to 100 episodes of this, just to figure out how to Pre-Bolus and that kind of stuff. Right? Right. So that's when I contacted Jenny, who had only ever been a guest on the show. And I was like, Can I ask you to help me, I told her what I was thinking. And we made the Pro Tip series with that. And then at the same time, I was like, if you want to keep doing this, I'd love to do definitions for people. So they understand what all these words mean. And we then we get defining diabetes. And then from there, I was just like, you want to do variables? Do you wanna do this? Do you wanna do that? You know, I was like, Do you want to do a series for people when they're newly diagnosed, and let's do one about thyroid, and let's, you know, and now,

Unknown Speaker 1:16:10 that's super helpful, because people get in there, and they can get, you know, a little short episode of really good info, and then go away and work on it. And then they can go back and get the next one. And it's not as time intensive as listening through our hour and a half podcasts. Right, you know, trying to glean information. Yeah, no, it's fantastic. I've loved it in the in the Facebook group as well. The Best Facebook group out there. I mean, it's the only literally, well, I won't say the only positive one, but pretty much I mean, rarely do you get people that are super negative, everybody's, like, supportive, and I get you and, you know, it's, it's very helpful, not very knowledge, something

Scott Benner 1:16:51 kind of happened on the internet the other day where somebody took somebody posted in my group, my private group, and it's a graph, it's not pretty of their kid, and they're trying to figure out, you know, they're asking questions, trying to figure out what to do. And a, I guess, what I would consider to be like, an ultra low carb group is, I guess someone's in my group under a fake name, because I can't find them. And they screen captured this, this person's graph, and they used it in their group to say, you know, I don't know exactly what they said, but it wasn't pleasant. And, you know, I don't know why people are doing this to their children and stuff like that, and blah, blah, blah. And I'm, and I'm not okay with that. It's the group rules, you can't take information outside of the group and everything. So I put up a very like, like, a very, like, strongly worded post about it. And I just told people, I was like, again, you can't do this, if you do this, you're going to be blocked. If I if I, if somebody tells me that in another group, somebody's making fun of somebody, I don't care if you made the post, but if I see you liked it, or you're in it, or you've made a comment, I'm like, you're out of here, like this business safe place for people. It needs to remain that way. And what you see is that 99.9% of the response when people say thank you, this is what we need. And it really is only a small fraction of people who are otherwise but once they're you don't I mean like it but it's like a I guess it's like

Unknown Speaker 1:18:22 yeah, it seems like about every three to six months. You have to go in and do it. You know, a Scott reprimand on people. It's funny I'm like, oh my god, it's hilarious what you said

Scott Benner 1:18:32 just this last one I was I already to you as we find because it makes the point but there most people are not like that. No, but it's like a flying your soup. You don't I mean, if only point oh 8% of your soup is fly. That's still too much. And no, nobody wants that. So every once in a while, you just have to go in and say it on my said I'm sorry to have to post this but from time to time it becomes necessary to remind some people about basic civility. You are not permitted to repost any images, graphs or words that are that you see shared in this group. If you do, you will be removed from the group and your account will be blocked. There are no second chances. If you are a person doing this, and you are hiding your true identity, well, I find that particularly cowardice and we'll be happy to call you a piece of your face. Please, please respond below so that we can begin that dialogue in if you see any reposting materials online please let me know so that anyone participating in this file behavior can be removed from the group. Let me be clear about what that means. Let's say hypothetically that one group uses an image from here to shame a person and then you in that other group participate in that conversation. You will also be removed from this group. No one that would assert a false moral superiority. Using a member of this group as cannon fodder is welcome here to take this a step farther. If you think it is okay to use another person to make your point. And you should also leave the group immediately. There is nothing more important than the privacy and safety afforded by this group, a group and for people living with diabetes, not just the people whose decisions you agree with, but all people. If this is the sentiment that you disagree with, please leave the group now. To the other 99.9% of you, I'm sorry that you had to see this and hope you have a pleasant evening. To the person who did this. I know who you are. I don't care why you think this is okay. I imagine that you're pretty pissed right about now. But please remember that as a courtesy, I did not identify your group. If you would please return the kindness by leaving my group and taking that post down, I would appreciate it. And to reiterate the sentiment that I've shared a million times before, I don't care what anyone believes, eats, smokes loves, doesn't matter to me. If it matters to you, right on, do you. But in this space, we don't make people feel badly for these or any other reasons, you will not push your beliefs on others here. I get that some of you think that you're saving the world. But again, make your own group start your own podcast, run a skywriter. Whatever makes you feel complete is all good with me. Unless you're going to repost something that a person shared here in confidence, because that is a bridge too far. So that's that. So yeah, about once, maybe twice a year, right? I yeah, I get to go to a creative writing class. And

Unknown Speaker 1:21:19 it's hilarious. I mean, it's always really, really humorous to me, because he just call them on the table just for I mean, and it is it's 100% True. Just leave people alone.

Scott Benner 1:21:29 I've had people say, Why didn't you send me this privately? I'm like, Well, you do something crappy. And then if we get to privately handle it, I'm like, No, if you're gonna be crappy in public, then you're gonna get talked to about it in public. And everybody else needs to know that they they're safe, be defended, and the rest of people who might do something like you, maybe they'll just leave on their own. I'm not looking to listen. I think that group is amazing. I think if you have problems managing insulin, or managing the psychological aspects of diabetes, somebody in there will help you. And I think the same thing about the Podcast, the podcast, if you want anyone seeing the five, just listen to this podcast, carve out 800 hours start at the beginning. Listen to it your A once he's going to be 5.5 when you're done. 500 hours. I don't have it. You do? What are you doing? You played tennis all day yesterday? You're fine.

Unknown Speaker 1:22:15 I did. You're right. You're right.

Scott Benner 1:22:19 And so, but but is everyone going to do it? No. Everyone's not gonna listen to the podcast. And that's okay. I can't make them listen to it. Not everyone's gonna be a nice person online. I'm not trying to make them be that. I'm just saying. If that's not who you are, if that's the if you don't want to be involved in this thing the way it is, that's fine. Just go somewhere else. But don't come over here. And you know, my pool, like, that's not okay. And let's not pretend that that's not what we're talking about with some big nice words and being flowery about people's feelings. And Baba, no, no, just be a person or get out. That's it. It's super, super, super simple. That's all super simple. I just said, Yeah, Oklahoma. You people can't drive in the snow by

Unknown Speaker 1:23:04 the way. No, they can't. But I'm not from Oklahoma. So

Scott Benner 1:23:07 you said that earlier. But you've been there long enough. Yeah, but I lived

Unknown Speaker 1:23:11 in Connecticut. That's where I lived. I guess I've lived most of my life here now. But yeah. I can drive in the snow.

Scott Benner 1:23:20 Yeah, I bet you can. But I don't know. Okay. All those trucks all those trucks. Little bit of snow. Everybody panic says in their house.

Unknown Speaker 1:23:30 Oh, yeah. Because their pickup trucks are hard on the snow.

Scott Benner 1:23:34 Kelly you throw a little weight in the back. It's fine. It's not a big deal. Couple cinderblock bags of sand something like the kids back there. You don't think in Oklahoma. You can still sit in the back of a truck. probably can. Yeah, I'm saying. All right. Anything. We haven't talked about Kelly that we should have? I don't think so. Cool. I appreciate it. I appreciate it. I appreciate all you do. Oh, thank you so much. I'm very happy for for how much the podcast is helping you. I'm glad that maybe we talked about something here today that will help your family I would love it if it did. If you would let me know. I surely well. Excellent. All right, hold on one second. Okay. A huge thank you to AG one. That's right. Athletic greens.com forward slash juice box, get that green drink. Start your day right. And cozy Earth. With the offer code juice box at checkout, you will in fact save 35% off every order all day long. Everything you buy at Ko xerath.com use the offer code juicebox. And of course, Kelly for coming on the show today and having this awesome conversation with me. Thank you so much. Guys, I hope you're enjoying the program. If you are a share it with somebody else. Don't forget to subscribe and follow and check out the private Facebook group Juicebox Podcast type one diabetes. Thank you so much for listening. I'll be back again very soon. with another episode of The Juicebox Podcast

#925 Best of Juicebox: The Time I Decided to Share

First aired Feb 17, 2015. Scott talks about how Arden's Day went from a type 1 diabetes advocacy website to the patient blog that it is today.

+ Click for EPISODE TRANSCRIPT

Scott Benner 00:00 Hello friends, and welcome to episode 925 of the Juicebox Podcast Well, we're going way back today to episode three. It's called the time I decided to share and it originally aired on February 17 2015. My microphone is different. I don't know what I'm doing. And yet I hear so often from people that this is one of their favorite episodes. So that's pretty cool. While you're listening and wondering why couldn't have gotten a better microphone. 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 head to cozy earth.com You will save 35% off your entire order with the offer code juice box at checkout one word juice box at checkout at cozy earth.com to get 35% off everything they have. joggers, sheets, towels, pajamas, they've got so much great stuff. Check them out cozy earth.com Use juice box at checkout to save 35%. The podcast is sponsored today by better help. Better help is the world's largest therapy service and is 100% online. With better help, you can tap into a network of over 25,000 licensed and experienced therapists who can help you with a wide range of issues. Better help doc.com forward slash juicebox. To get started, you just answer a few questions about your needs and preferences in therapy. That way BetterHelp can match you with the right therapist from their network. And when you use my link, you'll save 10% On your first month of therapy. You can message your therapist at any time and schedule live sessions when it's convenient for you. Talk to them however you feel comfortable text chat phone or video call. If your therapist isn't the right fit for any reason at all. You can switch to a new therapist at no additional charge. And the best part for me is that with better help you get the same professionalism and quality you expect from in office therapy. But with a therapist who is custom picked for you, and you're gonna get more scheduling flexibility, and a more affordable price betterhelp.com forward slash juicebox that's better help h e l p.com. Forward slash juicebox save 10% On your first month of therapy. The podcast is also sponsored today by us med us med is where my daughter gets her diabetes supplies from and you could to find out more Get started today. Us med.com forward slash juicebox or call 888-721-1514 All right. Okay, I'm gonna close my ears. Wait till you hear this microphone This is the Juicebox Podcast episode three. I'm Scott Benner. Today we are going to delve into the very beginning of my type one diabetes parenting blog called Art and stay. I let's see where to start. Okay. My daughter Arden was diagnosed with type one diabetes a few weeks after her second birthday in 2006. Just about exactly a year later, I began writing about my experience as a parent of a child who has typed block online. But I didn't do it the way you're thinking of it now in 2015 and 2015. You hear somebody say I started a blog and you go, of course she did. Everybody has a blog. I've been told that there are approximately 4000 Personal type one diabetes blogs on the internet, which is amazing here in 2015. But back in 2007. I didn't really know what a blog was. I had never read one although there were some in existence. There weren't many. And the only real reason I found blogging was because there was this piece of software on my computer called iWeb. And iWeb allows you to put your thoughts down on your computer and share them online and that seemed like something that I wasn't really excited to do, but it seemed like something that I needed to do. So Arden's day wasn't called Arden's day when it started. It was just it was just my attempt to reach out to my family and extend Good friends and my circle, you know, the people that that we knew and explain type one diabetes, that that's all I was looking to do it if you have type one, or if you're the parent of a child with type one you know exactly what I mean. There's this whole life this whole kind of micro cosmos of, of diabetes that other people just don't understand it, you know, and I find myself saying it all the time, come live at my house for a week and you'll leave running scared, you know, like those, like the normies did from The Munsters house, you will, you will run away and have a completely different perspective on on what's going on. So I thought, Okay, I'll start, I'll start telling people about it. But I can't go door to door, you know, I can't spend my whole day calling people on the phone explaining how am I going to get this out? I thought about, he used to do this thing for fun, I would get up in the morning. And while I was kind of getting myself together, I'd read the news. And I'd pick a couple of news stories. And just make fun of them and email them, you know, messing around to a couple of friends. Now you do that on Facebook, you get up in the morning and think of something witty to say. And you send your witticisms out into the world on your Facebook status. But a long time ago, I was doing that through email. And I remembered that as being pretty, you know, a pretty viable way of reaching people. Because if somebody thought it was funny, they'd send it to somebody else. And you know, before you knew what they were you were getting emails, like, hey, put me on your email list about when you make fun of the news. And I thought, Okay, well, that's a good way to get this information out. But I can't send these long, you know, full emails to people about diabetes. I'll use iWeb. I'll write my little stories, you know, little bits at a time digestible bits at a time. And then I'll send out an email and let them know it's there. Because how old you know in 2007, would you let someone know there was something on the internet for them to read? So the day I picked to tell people was just a regular day we got up, we had to go somewhere. My kids had to go to the dentist. We were going to have lunch, etc. We had to drop something off at someone's house. And I remember leaving the dentist office and thinking Arden's blood sugar was okay, you know, this is before CGM and all that stuff is she she was good. She was in a good spot. And we left and got food. And I do remember thinking she needed the food, I grabbed the food. And on the way home, I just tried to stop at someone's house and drop something off. Just it was an errand I had to run. And I think we just got caught in the driveway talking for a couple of minutes, you know. And there was no insulin involved. I hadn't you know, this is well before I would have had the nerve to give insulin before eating. So this was just the normal course of the day. We get home and we try to eat and I realized that Arden is lower than I expect her to be. And I test her. And I don't remember how low she was. But she was low. And looking back now I can see she wasn't just low. She was falling in love. Because as I was testing, she was getting lower. Now Now it's important to keep in mind that ARD was diagnosed when she was two. So this this is happening in August of 2007 Arden's you know, three years old, it's not really easy to get a person with low blood sugar to be cooperative. But it's it's even less easy to get a three year old person with low blood sugar to be cooperative. As I was sort of scampering around in our, in our kitchen, I saw the video camera. And I just flipped it. I stuffed it on the table, and I pushed the button. And then I went on to handling Arden's low blood sugar, my son was there, if this was 2008, he's like eight years old, are just three. And don't even think about the video camera again till we're done. And it was a particularly difficult few minutes. She was crying and snot coming out of her nose, and she was having trouble being reasonable. And I didn't know what I was doing. And when we were finished, I remember feeling sick about videotaping it felt really, really sick about it. And I didn't look at it for a while. But finally when I did look at it. And it was so shocking to me still. And I thought, well, this is something other people should see. Right? I've been spending this time on this blog, talking about the JDRF and low blood sugars and all these things that no matter how hard you try to explain to people, I just don't think the reality of it really comes through unless you're there. And I thought okay, well maybe this will help. Blogging was different for me back then. I wanted people to understand type one diabetes, but I wanted them to understand it so that they'd become advocates so that it would donate to organizations that were looking for cures and advancements. Because I am not a doctor and I desperately wanted to help move my daughter towards a better life. And so I was trying to use the blog for that. I can't honestly tell that if I was blogging for the reasons I am today, which is sharing so that hope Fully, you can feel less alone, or have a sense of preparedness in a situation when it comes up that you've never experienced before, you know, when something terrible happens, and you think, Oh God, I did read about this happen to somebody else, and they made it through, okay. And I even do remember a couple of the steps that they took me, that's me today, talking about and writing about type one diabetes, it's a sharing community building. Endeavor, back then, I just wanted you to be interested in helping my daughter to not have type one anymore. So my point is, I don't think I would share that video today. Because it's two parts. And that's coming from a guy who shares a lot of stuff online. A lot of transparency, a lot of a lot of honesty here on on origins day, and you know what come in here on the Juicebox Podcast, there's going to be even more of it. But I still, I can't tell you, I would definitely share the video. But back then I thought if this makes you understand and reach into your wallet and pull out 50 bucks, or 100 bucks or $10. So the video goes online, and it probably does exactly what I was hoping it would do. Because I think we must have raised like God, I think we must have raised $12,000 That year, that was our second year walking for the JDRF. You know, the first year or had only been diagnosed for a couple of months, I think we raised $1,000. But that next year with the blog behind me and my motivation at an all time high, raised a lot of money. And I'm sure that video and the video of art and getting up in the morning and seeing a needle go into a little kid's leg, I'm sure that that had a lot to do with it. And I'm, in retrospect proud of it and happy that we did it. I don't I don't look back on it and think we shouldn't have done that. So the blog begins, it's real advocacy heavy at first. But at some point, I feel like my asking is getting repetitive and boring. And I'm starting to see through interactions with a community that the videos and the sharing and I'm start is really helping people. So I start writing more about the diabetes and less about the Hey, help us raise money. And then I see those blog posts starting to connect with people. And my little blog that's reaching, not many people started to reaching a few more people and a few more. And I start really seeing the benefit of the transparency, and the honest sharing. I think the first really personal thing that I shared in writing and you might go back and read and disagree you might see something sooner is that in that coming year? After after the videos, we find out that Arden is as she approaches her fourth birthday. She she's you know, we told her you know, I don't know what you tell little kids, you know, make a wish on your birthday. And you know, I guess she knew that. And her aunt came to us and said, You know, I just thought you should know that Arden's telling people that she's wished for her diabetes to go away, and that she's not going to have type one anymore. When her fourth birthday comes now that was something that sitting here now. And looking back at when I wrote about it years ago, it's just as heartbreaking today as it was then. And it's still still to this day remains one of the more terrible things that that's ever happened to me. Oddly, not the knowledge that my daughter was running around telling people that she had wished for her diabetes to go away and it was going to that that wasn't the terrible, the truly horrible part of it was having to be a parent and sitting down with your four year old, not even four and explaining to her that she could not wish away her disease, that when her fourth birthday came, she was going to wake up and still have diabetes. And I'll tell you that that was the very first time I recognize that children, despite their age, are experiencing things exactly the way you and I are. Maybe they can't talk about them the same way. You might not see the stress or the worry on them. But when we told art and that her diabetes was not going to go away for her birthday. She cried like an adult who had lost someone they loved. It felt like you were at a funeral. And we've spent a lot of time since then making sure that Arden's hope doesn't die. And I think that also has been happening on the blog too. So as terrible and as really depressing. As the last two minutes I've been speaking is, it's not. And I'm going to tell you why. Okay, you may have heard a click there of a mouse, when I pause the recording, and it is because I walked away for a second to make sure that I came back after that. After that description of the first year and a half of the blog, as you know, something that didn't sound very upbeat, but I really want you to hang on because this, this is going to pay off for you. Just like it paid off for me. And just a second. So to reiterate, blog starts, I'm just trying really hard to make advocates because I can't cure type one diabetes, and I'm hoping to drive money towards the people who are trying, I use honest stories and video of it that people really would never imagine was happening in someone else's life as a way to bring you right into ground zero and see it. It does create advocates, and it does create donations. But it's also bleak. And I started understanding that people are reading the blog, who also have type one diabetes, people like you, parents of children who have type one. And while I am showing them a mirror of their life, I'm not reflecting back anything positive at the moment. This is it's, you know, it's just like bad. You know, it's not bad fundraising, but it's fundraising and, and it's, it's not everything I want it to be anymore. And so now I have to start sharing my process, something happens, there's a moment or an experience or something that you would expect is terrible. I gotta come back and tell the story from the other end, what did they learn what came out of this? You know, what's the, what's the upside, what, what what happened. And here's what I've learned, whether it's dealing, my wife and I sitting in our house dealing with Arden's birthday wish. Or another moment that seems just unfair, these experiences lend you a perspective that you'd have to live a lifetime or two to get in a normal circumstance. So type one diabetes sucks. And I would treat it right now for anything and never think otherwise. But as long as it's here, I'm going to learn the lessons that it's teaching. Because I need those lessons to deal with the next moment, I am building myself into a parent every day, and into a better adult than I was yesterday. And that can only benefit my children type one diabetes related or not. So I'm going to take what I can get out of this thing, this diabetes disaster. And I'm going to try to grow, because I'm going to tell you that when something happens, that the person you were before you diabetes was in your life, can't imagine it's something that exists in the world, or, you know, when you stop and think about, you know, when you were having children, and you thought of all the things that were going to happen, you never thought this was going to happen. You never thought you'd be at the mall, hiding down a corridor by a bathroom, changing an insulin pump, or, you know, forcing your kid to drink a juice box at three o'clock in the morning when they're not even awake when you never imagined any of that. But now it's here. When those moments happen, when you find yourself in your kitchen, getting ready to record a video for this blog that you're making. You don't even want to be doing, you're just doing it because you're trying to defeat type one diabetes with a blog, and your daughter just starts talking about a seizure she had when she was two, when that happens. And you have to stand there and be an adult and say the right thing. When they're done talking. You grow. And as much as it hurts, it teaches you and when you wake up the next day, man, that's where the hope comes from when something really crappy happens today. And your eyes still open tomorrow. And you're not dead. And it didn't knock you down. And that's where the hope grows. And it reframes your ability to handle the next moment that's coming. And that's the value in it. So getting through today's issue is not only making you stronger for the next time it happens it's going to eventually turn you into a person who doesn't see that as an issue anymore. And you will be zen like you will be matrix like at some point with type one diabetes. Now maybe you're listening to this right now in your child's been diagnosed for a long time or you've had type one diabetes for a long time and you're thinking yeah, man, tell people tell people that type one diabetes doesn't get easier but you get so much better added that it almost feels easy at times, tell them that's coming, even though they can't believe it at the moment. Find these newly diagnosed people, these parents who are a month into diabetes, or six weeks or a year, who are still struggling and thinking that it's never gonna get better, let them know what's coming. And that is what I'm hoping to do. And that's what I started to try to do with the blog back then, too. I started seeing my life as it was unfolding, and these lessons building on each other. And I thought I'd never would have believed this back in the beginning, I should tell somebody else, this isn't information I should keep to myself. So if me sharing creates a sense of sameness, or a sense of calm or a sense of preparedness for you. Some people say, reading ahead in the blog, when their child was just diagnosed makes them feel like, Oh, that sucks. But I at least I know it's coming or that it may come maybe when it happens, I won't be completely knocked over by it. If the blog is doing that for you, I am very glad of that. So as heartwarming as you can imagine, I just want you to know that some really bad stuff has happened to me, to my wife, to my son, and mostly to my daughter, Arden. And we're still here, we're stronger than we were, then we're smarter than we were then we're more resilient, more determined, and more transparent. Because stuff that you couldn't imagine before you had children, and before diabetes came to you is going to keep happening to us, we are going to continue to respond to it with our ever growing and ever building knowledge database of life, and I'm gonna keep sharing it back with you. And I hope you keep adding to yours. Here's the takeaway. Having type one diabetes is not fun. It's not anything good. But it's not everything bad. And there are a lot of things that are going to happen to you in the course of a day, a week, a month a year with type one diabetes, that sure, hindsight would tell you is not positive. And maybe you don't need that much perspective in your life, and you're not looking for that much knowledge. But it's here, you're not getting away from it, you're not going to you're not going to cure diabetes today. It's not going to go away tomorrow. But it is going to keep teaching us lessons. And it really is up to us how we respond to those things. Are you gonna put your head down and say, I can't do this? Where are you going to pick your head up and say, I look I did it yesterday, I can do it today. It's not killing me. And let me see the positives in this. You know, instead of just always thinking about the negatives that No, I mean, my God, I'm as tired as you are. I am tired. And there are days when I look up and I think No, not today, though, please don't need an insulin pump change today. Or why? Why is this blood sugar high? I did everything right. I know that happened. But you've got to roll with it quickly, quickly in and quickly out of the situation. You recognize it. Maybe let out a big sigh. You handle it and you move on, bang, bang, bang. There is no sitting around lamenting or feeling sorry for yourself. You want to cry, go in the bathroom, cry, Dry your eyes off, come out and keep going. Because you can because I'm doing it. And my God, there's nothing special about me. There's absolutely nothing special about me. I hate diabetes. I love my daughter. I want to see her live as long and as healthy as possible. I want each day to be as unencumbered as it possibly can be. So whatever bad stuff happened yesterday, I just look at it as a lesson for tomorrow. And I just keep building on what I know about type one, what I know about resilience, what I know about parenting and what I know about love. And that information, those experiences those feelings they make the next time. I don't want to say easier, because it really is never easier. I just keep getting better at it. And that makes it feel easier. It's going to work for you too. I promise. I promise if you keep a good attitude, I promise if you keep paying attention to what's going on, eventually you will build up your ability to slow everything down, you know, getting to be an old reference. Now that matrix been out for quite some time but the very first time something went wrong. You know that one video that I hope you go back and look at is of art and describing her having a seizure when she was I don't know she must have been about two and a half. I feel like it was about six months after her diagnosis. And a year later, completely out of the blue, she starts talking about this seizure and describing it and I still have this video camera out because I'm making a blog. And I do it again, I flipped the video camera on it's pointing at her. She has no idea it's there. And she describes some pretty heavy stuff. Three and a half year old girl talking about her eyes changing colors, which, if you really listen to her, what she's saying is she was blind. She talks about turning into a monster. But if you pay attention to what she's really saying, she was grunting because she couldn't talk. During the seizure. That's about as low as it gets. Man. My two and a half year old daughter had a seizure because I gave her too much insulin for some food are you talking about when your blood sugar gets low? Like cooking up really good stuff you weren't able to talk? Right? And then what happened? Did your voice make a different sound?

Unknown Speaker 26:03 Do you remember that? Like

Scott Benner 26:13 how did your eyes work when you were having your seizure? She was doing this. But we're still here. She's still here. She's fine. That's pretty much the worst thing you could have. I mean, I know right now, as a parent of a child with type one diabetes, your biggest fear is that your kid might have a seizure? Mine did. She still fine. She's still the kid you see on the blog, hitting a softball, playing basketball. She is as active and as everyday kid is anybody else? And the worst thing you can imagine has already happened to her. And I gotta be honest with you. It's happened twice happened about a year later to still here. Has it happened since then? No, no, that was, you know, she was two and a half. When that happened. She's going to be 11 this summer. So I learned, I figured it out. I figured out what I did wrong. I don't do that anymore. If I make a mistake, now I know how to take care of it better. But that's not the takeaway for you. The takeaway for you is the worst thing you can imagine happened to my daughter, she's still fine. We can keep that from happening to your kids with some resilience and, and some hard work. You know, you can you can take my mistakes and turn them into your knowledge. But please leave this recording. Leave it with the knowledge that nothing is as bad as you think it's going to be. And at least when it feels horrible. teaching you something. type one diabetes, teaches a lot about life. teaches a lot about who you are and who you want to be, and how you want to be that person. And what you wanted to accomplish today and what you're hoping to accomplish tomorrow. And what's your goal? But not a lot of people know what their life goal is. But you don't you? I know what mine is. We have a perspective on life as the parents of children with type one diabetes that people who live with type one diabetes, we have a perspective on life that you should have to live two lifetimes to gain. And maybe that's unfair. And I actually think it is I think you should have to think you should have to live a whole full life to know some of the things I know. But man, if it helps me take better care of my family. Then I'm glad I have it. And I want you to be glad you have this knowledge too. That's pretty much it people. This was number three Juicebox Podcast episode three. Felt like a bummer, but maybe it's not. I hope it wasn't. I hope you come back next week to come on. Do you sick for the Juicebox Podcast composed and performed by Sidney molar. If you enjoyed this podcast, please review it on iTunes. Well, thank the person that made this microphone that I'm speaking into right now. And thank you for listening to the podcast. today's podcast was sponsored by us med now us med like I said before is where my daughter gets her Dex comment on the pod supplies from its US med.com forward slash juice box you can also call 888-721-1514 You hit the link or call the number to get your free benefits check us med has an A plus rating with the Better Business Bureau. They accept Medicare nationwide, over 800 private insurers and they carry everything from insulin pumps and dive He's testing supplies to the latest and CGM is like the FreeStyle Libre three and the Dexcom G seven. US med always provides you with 90 days worth of supplies and they give you fast and free shipping every time better service and better care is what you're gonna get from us med with over 1 million diabetes customers served since 1996. US med is ready to help you. Us med.com forward slash juice box or call 888-721-1514 Thank you so much for listening to this episode of The Juicebox Podcast. I'll be back very soon, with much much more. A huge thank you to one of today's sponsors better help, you can get 10% off your first month of therapy with my link better help.com forward slash juicebox that's better H e lp.com. Forward slash juice box. If you've been thinking about speaking with someone this is a great way to do it on your terms betterhelp.com forward slash juice box