#329 Denying Diabetes
Scott Benner
Julie is Abigail's Mom and this is their type 1 diabetes story
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Pandora - Spotify - Amazon Alexa - Google Podcasts - iHeart Radio - Radio Public or their favorite podcast app.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello everybody, welcome to Episode 329 of the Juicebox Podcast Today Show sponsored by Dexcom. And on the pod, you can get an absolutely free no obligation demo of the Omni pod sent directly to your door by going to my Omni pod.com forward slash juice box. And to find out up to date information about the Dexcom g six continuous glucose monitor, you just go to dexcom.com forward slash juice box.
Today's show features Julie now Julia's Abigail's mom, Abigail has type one diabetes. Julie is a 911 operator, and Abigail was diagnosed at the same hospital that Arden was. And that's not even the tip of the iceberg about today's show.
Hey, there's some new stuff in the Juicebox Podcast merge store. For those of you who have been bugging me, I think literally for two years about the tug of war graphic with the insolence having the tug of war with the apple and the hamburger and the milk. I finally found a way to make that image printable. So there's a coffee mug, a neck Gator. If you don't know what that is, you should go check it out. That has that and a white t shirt with it on the front it is adorbs as the girls would say in 1987. A couple other items are on sale. Anyway. Juicebox podcast.com you'll find the link at the top saysmarch. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise please always consult a physician before making any changes to your medical plan or becoming bolder than I made it.
Julie 1:49
Hi, my name is Julie. I'm Abigail's mom, she's 11 year old, he one day diagnosed. It's been a little over two years now. And we've been working with it ever since.
Scott Benner 2:02
All right, Julie. So Abigail is 11. So she was diagnosed at nine. That's two weeks or her birthday. Two weeks I'm sorry. Prior or before.
Julie 2:13
After, after after,
Scott Benner 2:14
okay. Two weeks after her birthday, two weeks after her ninth birthday. That must have been unpleasant. And we're the were the decorations still up somewhere in the corner.
Julie 2:26
I'm pretty sure but yeah,
Scott Benner 2:28
we just like Oh, good. Now I can go clean both streamers up. And now you're it's funny. You're I don't want to say exactly where you live, but because that wouldn't be right. But I believe you may live somewhere near where my daughter was diagnosed?
Julie 2:45
Yeah, yeah. I mean, I'm fine with it. We I mean, we live in Franklin, Virginia, but close to Norfolk. Okay, where she was taken to ch Katie.
Scott Benner 2:55
And that's the tell me the name of that hospital. Children's Hospital King's Daughters of the king's daughters. That is where my daughter was diagnosed as well. We were on vacation at the time. And okay, at the beach. And it was, it was interesting, because I woke up my friend who is also my kids pediatrician. You know, like one in the morning, I said, we're taking you to the hospital. And he said, Where are you going? And I told him, he's like, that might not be right. And I was like, what he goes, there's some hospitals that are more, you know, they have like children's I didn't know back then they have like children's wings for diabetes. And some people have like specific diabetes care, the other hospitals don't say. So my pediatrician who is also a friend ran to his computer, because this is before, you know, phones that did great things. phones, it did anything. I wonder if young people are like wait, phones didn't always do things, but no phones used to just make phone calls. And so there's my my friend, my pediatrician in his underwear, booting up his computer? And he said, No, no, I'm gonna let me give you an address. I think you should go to this hospital instead. And it turned out to be the hospital that you were, you were diagnosed that as well. So that's interesting. And we have that in common among a lot of other things. I think So tell me a little bit about that time. Was it a surprise or do you have diabetes or in the family?
Julie 4:25
No diabetes? Well, I mean, we have type two, but not type one at all. A lot of intercurrent issues in the family, thyroid issues celiacs but there was no symptoms from her whatsoever. I mean, nothing. I tried to look back on it and see if I missed anything. But absolutely nothing she she had been complaining I guess for maybe a day, maybe two days of lower right abdominal pain. So for me doing what I do for a living emergency number one dispatcher I immediately Went to appendicitis. That's what I was thinking. Sure. And you know, I even touched her right there and she like almost came out of her skin. And so I immediately said, Okay, this, this is what we've got. We've got to take her somewhere. I can literally walk across my backyard to a hospital. So we took her to the closest hospital we've got, and we walked in the emergency room, and it was wall to wall with the flu and a stomach virus. And I was like, this is not going to work because she just got off two rounds, steroids because she has asthma. And I was, yep. I don't want her to get whatever they've got. So my husband took her to oversee hospital and Suffolk with third grade hospital. And she got right in because they know me by name because I work for the police department, the fire department down there. And they took her right in. And they did all the lab work. They thought she had appendicitis. They did all the lab work CT scans, and it came back and they said, we're gonna transport you ch Katie, her bloodwork her blood sugar's 480.
Scott Benner 6:08
Well, okay, so first of all, I love you throwing your weight around getting right in. I am completely amused at the idea that you walk into the emergency room saw sick people, and we're like, this is not the place for us.
Unknown Speaker 6:21
Not getting near these sick. Yeah, now.
Julie 6:24
I'm a germaphobe. Really, really hard. I'm bad.
Scott Benner 6:29
I'm delighted by that idea. Like, this is an emergency who not that much of an emergency.
Unknown Speaker 6:36
I saw sick people blow
Unknown Speaker 6:36
their nose. And we're out of here.
Scott Benner 6:38
That's that's, that's very nice. And see. Interesting. So as soon as they see her blood sugar, this hospital you're at? doesn't excuse me that doesn't mess around just moves right over to the next hospital.
Julie 6:53
Yeah, I'd say it was maybe 45 minutes, the time she got their blood work came back how to transport it.
Scott Benner 6:58
Okay. And so you are really the first person it's one of the things that sort of attracted me to the email that you sent me was that I've never heard someone say there was a symptom. But it wasn't one of the classic. I think I might have diabetes symptoms. Did you ever find out what the pain was?
Julie 7:19
Nope. And she had it for months afterwards. Like it was always one of her complaints.
And then never figured it out?
Scott Benner 7:27
Is it possible that the pain had nothing to do with the diabetes and you just got lucky?
Julie 7:34
I guess possible. We had her pediatrician actually put her on a acid reflux medication after the fact thinking maybe that was the cause. And maybe like a month or two later, it went away. So we're thinking maybe it was just something coincidental.
Scott Benner 7:49
That's really interesting. A little Good luck, bad luck. Right? Mix up. I know, people who have gone in for one thing and, you know, left thinking something very different. And it's saved their lives sometimes. You know, and this is this is a really interesting situation because I, it feels to me, like especially 498 or what was her blood blood work like 480. That's not incredibly high. And it's possible that if she would have got that blood work done, three hours later, she might have been lower, like, Did she honeymoon much afterwards?
Julie 8:22
her honeymoon or denial phase? I call it? Yeah. Because she wasn't even today only on insulin. She was only on levemir for a month, and then she was taken completely off insulin for a year.
Scott Benner 8:35
You did find it by mistake too early. Oh, yeah. That's That's interesting. This is mistaken. Diabetes.
Julie 8:43
Denial phase with the husband and everybody. Oh, yeah. It was awful. So I only have that. IBD
Scott Benner 8:49
Yeah. So my denial only lasted about a day. And it happened fairly far into Arden's time with diabetes. And by far, I mean, you know, months. But there was a day where we just got up and she didn't need insulin all day. And it was all day and it was with meals, it didn't matter. Like everything was just back to normal. And so the pediatrician who sat in his underwear and found me a hospital to go to in Virginia, is also the same person I called later, in that afternoon, and I I knew I was being I knew I was being hopeful and ridiculous. So I started my sentence to him. I said, Look, I'm about to say something. I know I'm wrong. Just stop mean, get me off the phone. And he was like, okay, and I said, I don't think Arden has diabetes. She hasn't needed insulin all day. And he's like, yeah, I get off the phone. Scott. She has diabetes, and I was like, Okay, thanks. That was it. But did you have I mean, a year, you told me a year she didn't need insulin,
Julie 9:56
not for full. It was a year in two months, actually to the day.
Scott Benner 10:00
Did she have high blood sugars during that year in two months?
Julie 10:03
Not Not when we checked my blood now.
Scott Benner 10:06
So what? How does when that goes on for days into weeks into months, tell me about, like how that struck you.
Julie 10:15
Um, my denial only lasted until the blood work came back, you know, those tests that they send off for all the antibodies? Because once I did enough research into it to know what those should look like, so once those came back and they were off the charts, I knew, you know, this is exactly the she definitely has it. There's no way. My husband and my mom, they were absolutely in denial. They're like, nope, those tests are wrong. There's no way she's not insulin, there's no way she doesn't have this. They're wrong. Let's get a second opinion. Let's get a third opinion. When you're seeing I mean, the doctor we were seeing in the practice, he was number two in the country. pd, a pediatric endocrinologist. I was like, how do you get better than that? I mean, who's gonna be your second opinion? Right? Right. There we go from here. So yeah, where do you go from here? And we have since but that's a whole nother story. But anyways, um, so but it lasted and it was a big fight in the house. I was like, I need everybody on board. This is not helping. This is not helping her. This is not helping me. I need everybody on board. But then you go to Disney, we went to Disney for seven days, she ate whatever she wanted, it didn't matter. And she still had phenomenal blood sugar's but something in the background was going off. Because when we every three months, she would go back to the endocrinologist, her Awan see was still, you know, at eight. Yeah, there was still something we weren't saying.
Scott Benner 11:41
And you weren't testing that frequently, I'm imagining.
Julie 11:44
Now, if they still only want us testing three times a day,
Scott Benner 11:46
right? So if you test that they're correct three times every day, you're not going to see elevated blood sugar, if our pancreas is intermittently working, or right, we're working at, you know, at a half power situation or something like that. I'm very interested, I don't want to get you into more of a I mean, I know it's been two years, I don't I don't want this podcast to lead to you and your husband. Having to call you at 911. So, but, but um, gosh, I guess you can't really get into a fight like that. When you're nine one off, you're like, Look, you can call you want, they're not gonna believe you. But, but but so. So how does that manifest in real life? Like when somebody is on one side saying, Look, I don't care, you know, took a test. And sure the test said one thing, but what we're seeing is clearly opposite of that. And you're saying no, don't is Abigail hearing that too? Is she part of that conversation? You you have diabetes, you don't have diabetes?
Julie 12:41
Um, you know, Tim and I have been together for 16 years, married for 16 years, and together for 18 years. So we learned a long time ago, we don't fight in front of the kids. We don't argue in front of the kids. So no, we tried to maintain a united front together. But she kind of believed that Hey, Mom, if I'm not insolent Do I really have this? And I tried to explain to her the honeymoon phase. I was like, look, I think we're just having a really good honeymoon phase. Which to me, I don't know if I'd rather have this one or the other one.
Scott Benner 13:14
Yeah, it's like, I know people who are who go through honeymoons that are you know, drastic, where they need insulin, then all of a sudden, they don't, then they need it again. And then they don't. And it's tiring. Because you're always about to put insulin and thinking like, is this the time? I won't need it? Or the time? I do need it? That's Yeah, it's difficult. I want to sort of keep going for a second with with Abigail, thinking one way I understand the way she was hoping I would have, you know, certainly hope the same way I understand the way your husband thought of it. I understand the way you thought of it, you know, like everybody, you're trying to be pragmatic. He's trying to be hopeful. But did. And she trended to that to sort of his his side? Which opinion Do you present to her? Because it's funny, as you're talking about this, it strikes me like, two parents with two, like, really differing ideas about religion, for instance, like, you know, let's say you're let's say you're Catholic, and he's agnostic. Which one do we say to the kids? Right, right, you know, or do we say both, but and you didn't say, but you didn't say, you know, I think there's a God and he doesn't or vice versa. You said, What did you say? How did you present it to her together?
Julie 14:25
Basically, it was a let's let's live in the now Hey, this is what we're this. I'm not gonna tell you don't have it. Because I know I know that you do. And I was very upset and very honored to there from the beginning, which my husband tells me the fault you tell them too much truth, Julie. But it's, but look, this is what you have. However, right now, you get to be how you were before we don't we don't have to worry about it right now. So let's just enjoy it while we can. You know, we know at some point the other shoe is gonna drop so to speak. But let's just enjoy it while we can. I mean, we got it. Disney, we got in a trip to the beach, we got in the full cruise without ever having to worry about it. And she got to have the best year and a half ever, without having to worry about it.
Scott Benner 15:09
She just embarked on a pancreas goodbye tour.
Julie 15:12
And absolutely, like when an athlete
Scott Benner 15:14
retires, they stop at every stadium and they're like, go ahead, clap for me one more time. And I'm leaving. And yeah, you said your daughter's pancreas is sort of like, I don't know, LeBron James in the last year he'll play
Julie 15:25
Absolutely.
Scott Benner 15:28
So I like that idea. I think because there's no perfect way to handle a situation that says you're about to feel the effects of a lifelong incurable disease, but it's not here today. But it's definitely coming. I don't I mean, it must have been maddening for you. I really, did you find I'm imagining how you've described it. You found relief when her pancreas probably like gave up? How did your husband handle it though?
Julie 15:57
I think it was like a funeral. It was like a death.
Scott Benner 16:01
Yeah, because I mean, it was he really sincerely hoping right?
Julie 16:06
Oh, yeah. Yeah, I don't think he ever had that grief period. Like I had, there was a whole lot of tears and everything in the beginning for me. Because I remember thinking I did something I remember as I broke down to the doctor and ask them, What did I do to make this happen? Because I knew nothing about type one, nothing. But him. He never went through that grief. He didn't go through that mourning period, because he had that phenomenal honeymoon period. And so when it finally happened, now, this statistic turn,
Scott Benner 16:35
Julie, I just realized it's possible. You and I have cried in the same room at a hospital in Virginia.
Julie 16:41
Probably
Scott Benner 16:44
just thinking, huh, I think I grabbed that room too. So yeah, I got you. I really do. I'm just I, you know, I'm gonna move on. But I that's just a fascinating conundrum to be in, you know, I get that I get him wanting to be hopeful. And then I started thinking, gosh, he got to be hopeful for 14 months. When it actually happened. It had to be it just had to be crushing. Get You know, sorry, feel for I feel for you guys. That's that's really something. So when it happens, and you know, for 14 months after your daughter's diagnosed and she gets diabetes, because she had a pain in their side. I do wonder like, when would you have actually found out? Like, like without that pain in her side? Would you have been diagnosed 14 months later? I know. You'll never know. But that's just really interesting.
Julie 17:31
Yeah, so now like my other daughter, I'm like, everything freaks me out. Like, are you okay? Why did you pee seven times today? Like what's going on? Yeah, yeah.
Scott Benner 17:41
Did you ever test Do you ever test her blood sugar when she's not looking? Like when she's asleep?
Julie 17:45
It was she loves me. And we've done trialnet on her too. Okay. Yeah.
Scott Benner 17:49
And you? Did she have any other markers, or do you not talk about?
Julie 17:52
Gosh, she has one. She's one of them.
Scott Benner 17:55
How about you guys? Did you guys do with it
Unknown Speaker 17:57
as well? Your? We did? Yeah, we're negative.
Scott Benner 18:00
Interesting. Who's got the thyroid issue? Is it in your immediate family?
Julie 18:05
Yeah, my mom. My dad had thyroid cancer my grandmother.
Scott Benner 18:11
So so just a you. Abigail wasn't dodging this one. This was this was coming in here. It did it. Did it all skip you.
Julie 18:19
It all skipped me so far.
Scott Benner 18:21
so far? Yeah. Yeah. You don't want the thyroid thing. It's a small thing. And it's manageable. But it's also not always manageable. 100% and it's sort of sucks. So I know Arden since she's been diagnosed as hypothyroid Geez, just she can never quite even though her medication is we think really well measured. She can never ever feel completely rested. Like she just doesn't can't accomplish that. And to be perfectly honest, my wife has it too. And she always has that. She always looks tired. To some degree. I think she's learned to live with it. But she's always tired to some degree. It's, it really sucks. It's such a small little thing, but it has a big impact on you. Okay, so too interesting. You've had so you count yourself as having diabetes for two years from the day you went to the hospital. But in reality, you've been living with insulin for about 10 months. Is that right?
Julie 19:21
In reality, I've really only been living with the two types of influence and June of last year.
Scott Benner 19:29
Okay. All right. Yeah. Gotcha. So how does it start? They You know, it finally kind of kicks in. Do you just have this moment where you're like this? Is it her blood sugar's not coming back down anymore?
Julie 19:41
Yeah, it's kind of gradual. In April of last year, she started going back up slightly, so they put her back on 1111 mere half a unit. That's all we were taken, which is incredibly difficult to get my syringe. As you as you know, I've heard with Arden when she was little Yeah, I think credibly difficult. But, and then we did that from April to June, she was only on a half a unit 11 year, did beautifully. And she never went back up. We didn't have to do a unit. We never had to go to full units on it. And then we'll It was like, over a course of two days, she gradually went back up, you know, she was at 150 and 160 and 180. And it was Friday. In June, it was a Friday. And she started she went back up to 300. And I was like, okay, I've never seen this number, like on a like I've never seen it. So I called it I forgot they closed half a day, the doctor's office. And I was get ready to go to work. I work nights, I work 60 to six day. And I called the doctor on call and I said, Look, I don't know what to do. Because we weren't trained on anything in the hospital, except the long lasting, we weren't trained to do carbs. We weren't trained to do any type of rapid acting insulin, nothing. We were only trained on the left mirror. And I didn't have any at home. So I didn't know how to bring her down. So our doctor was on call another doctor was on call. He said, Well, you got two options. I can give you a crash course on how to do this. And I can call you an insolent or you can bring her in and they can get her in the emergency room and they can bring her down. And I said oh, I said let's do the Crash Course Tell me. I said I can do it.
Scott Benner 21:24
Yeah. Especially if it's sniffle season. You're not going back in that emergency room. I know that for sure.
Julie 21:28
Yeah, absolutely not.
Scott Benner 21:31
So he called me in in one and we got the crash course. And I'm I mean, I did it. And I she didn't get in to be seen probably I think it was almost six days. So we we handled it for six days. Yeah, you basically just had a like a little stick and you beat the blood sugar back with the with your needles and your new insulin and your lack of any kind of real knowledge. And they worked out. I mean, it's Yeah, that's excellent. Good for you. Well, by then, you must have been pretty ramped up for it. You must have. I mean, I can't imagine what even back in the beginning when you say to yourself, look, this is diabetes, she just doesn't need insulin yet. I can't imagine you thought it was gonna go 14 months, there had to have been a time where you forgot about it.
Julie 22:10
Like I knew it was coming.
Scott Benner 22:12
Yeah. But prior to that when the blood sugar started creeping up, was there ever moments where you just didn't think about it? Or was it always sort of in the back of your head?
Julie 22:21
Not for me, I'm a realist. Like, I'm one of those that I hope for the best. But I prepare for the worst. So I knew.
Scott Benner 22:28
Yeah, no, I understand. I also would imagine being a 911 operator doesn't leave you a ton of latitude to believe things go? Well. I mean, it's a well, it's a weird situation, isn't it? Because I know I, I mean, I'm incredibly close with a police officer and who's been, you know, a police officer for decades. I think the one harsh reality of his life is that everyone he comes in contact with while he's working is either breaking a law or had something horrible done to them. And that starts to become your expectation for the world, you know, that? I just had happen to you with your job.
Julie 23:06
I mean, yeah, I mean, there's there's certain things I guess we we all deal with there. You know, everything like I'll go into a restaurant, my back doesn't face the door. There's just there's certain things that because of what we've dealt with, I mean, I know I don't see the front lines. I don't see it in person, but I've heard things on the phone that just completely freaked me out. And so I don't I don't take it for granted at home.
Scott Benner 23:29
Yeah, that's interesting. Just just isn't it something to because you do it every day. And maybe I'm assuming you're saying, you know, what, if there's a an invasion at the, at the restaurant, the place gets robbed or something like that happens, like I want to see what's happening. And maybe you've heard maybe you've heard that, uh, I don't know making up a number. Maybe you've heard that a dozen times in your life, but it's enough to think, you know, it's going to happen because it does happen. So you You are a pragmatic person then because of that.
Julie 23:59
Yep. Yeah, absolutely. Makes a lot of sense.
Scott Benner 24:03
You did not I'm going to skip in a second skip forward, but you did not ever drag your husband into a room and look at him in the face and go I told you no, you never Did you or did you not do that? Did you did you in my
Julie 24:14
head? I wanted to I wanted to but I did it in my head.
Scott Benner 24:18
It's like the one thing in the world you don't want to be right about. You're like, oh, like nailed this one. I was so right about this. So today, you know, 11 years old does she use a pump or glucose monitor or anything like that? Are you still doing injections? Well, with any luck your brain is not as broken as mine. And during this episode, every time you realize that Julie works for 911 a voice in your head doesn't yell. Somebody call 911 shorty fire burning on the dance floor a whoo as my brain does. Anyway dexcom.com forward slash juice box there you're gonna find out about the Dexcom g six continuous glucose monitor. Now what are you gonna find out when you get there? Let me save you a little bit of reading. The dexcom g six is FDA approved for no finger sticks means you can make dosing decisions based on the information coming back from the G six, that's a big deal, save you some finger sticks. Here's the next thing, share and follow. That means someone with type one diabetes can have the dexcom on them, share their information up into the magic of the cloud, and it will come back down. Like magic on your phone, or a loved one's phone, or a school nurse or whoever you choose. up to 10 followers can see that information. Huge, right? that's available for Android and iPhone. By the way, you can wear a dexcom sensor for 10 days. That's pretty cool, right? put a new one on every 10 days get a long wear time. It's discreet and small. And it's magical. The decisions that we make every day to keep my daughter's blood sugar where it is, or a one c stable, her variability comfortably smooth. That all comes from the dexcom g six. And that could be that way for you as well. dexcom.com forward slash juice box. Check it out. Because when you get that information back, you'll be able to just switch right over to your on the pod tubeless insulin pump and make insulin decisions that are reflective of what's really happening. Not a wild gas, or a hope or a prayer. But seeing the direction and speed that your blood sugar is moving in then you just pick up your Omni pod Okay, blood sugar's 84. And little man we're gonna have 35 carbs up on the pod says it's this much insulin, push the button, little beep. And the insulins on its way of having pizza want to stretch out your insulin with an extended bolus, no problem. This is 70 carbs. But I'd like 50% of those carbs to go in now when I push the button and the other 50% can be stretched out over the next two hours. Want to do that? No problem on the pod does that. Now all the pumps do that I'm not gonna lie to you. But those other pumps, you can't get into the swimming pool with no no you can't. Those other pumps have big piece of tubing off of them. And then there's a controller on the end that you have to clip to your belt or your pants. You imagine a little four year old you know with a something hanging from their pants just pulled pants right down and probably by pulls down pants my four year old. That's not right. What if you're a nice lady and you were in a cooler? Is that clothing? You have to stick your pump in your bra then? Not good. That's busting up your head. You know what I mean? What did they say that the the lines right of the clothing you don't want that either. Here's the coolest thing about on the pod on the pod lets you try the pound. absolutely free with no obligation. You go to my on the pod.com forward slash juicebox. There's links in the show notes right here in your podcast player or available Juicebox podcast.com. If you can't find your way through your podcast player, it's no big deal. When you go to that link on the pod send you an absolutely free, no obligation pump that you can try on and wear and decide for yourself. You don't even have to believe me, all you have to do is get the demo and see for yourself. So whether you want the Omni pod the Dexcom or both. But on my on the pod.com forward slash juice box dexcom.com forward slash juice box. You can hit those links at Juicebox Podcast com right there in the show notes of your podcast player. I've made it as easy as I possibly can to support the podcast and to get great gear to help you with your type one.
Julie 28:37
She was on the MDI from June until October. She got a T swim in October. I loved it when she originally got it. And then it hit summertime. And you know what? I don't like being plugged in. I don't want to have to unplug and so we just paid out of pocket for the Omni pod. So we have posts and she has the deck comm to size
Scott Benner 28:59
the file. So not to I'm not making this into an ad at all. But it was the being connected that she didn't like about the tea sign. Just the tubing.
Julie 29:09
Yeah. Yeah, it's hard to argue with.
Scott Benner 29:13
And it's funny so when she was around the house and a little more sedentary it wasn't such a big deal. But you're saying that once she got up tried to run around outside do that kind of stuff. It felt in the way towards that point.
Julie 29:24
Yeah. And that the infusion sets honestly for me. The T slim she had so much anxiety with the infusions that it took us an hour to get them infusion sets on her. I don't have that with the Omni pod. She doesn't. I mean, I've posted on Instagram like she's so adventurous with these Omni pod. She puts them on her forearm. She puts them on their calf that has no issues. Try them anywhere. I just trade.
Scott Benner 29:49
It's I was about to say it's early in the morning. It's 1030 but it's summertime so my kids asleep. It's early
Julie 29:57
for me.
Scott Benner 29:58
Yeah, it's early for you. My children are Sleep. I believe last night at something like three in the morning I remember texting my son just saying like, would you please give up and just go to bed. And I you know, Arden was up late talking to friends and cleaning her room. She likes to clean a room at like 130 in the morning. It's a thing for her. But her pump is you and I were getting you know, the hour before I was getting set up before we were going to start recording. I'm watching her on the pod slowly dwindle down. It's out it's running out of insulin. And I'm like, oh, it'll make it till I'm done with Julie. It will it will and then about 45 minutes before I got on with you. I was like I don't think it's gonna make it. So I I went downstairs, I got insulin, I filled the pod. I walked up into a room. I put the pod down next to boom, I push the button it primed. I I whispered in her ear are not going to change your pump. I took off her old pod cleaned her site, dried it, put the new pot on insert it put the blanket back over top of her and left the room.
Julie 30:59
Yeah, that's it.
Scott Benner 31:00
She's done. She never woke up. It didn't take more than a few minutes. You know, it didn't throw I didn't have to call you and say Julia it's gonna be a you know, I'm gonna be late because we have to switch a pump. It just it just took a couple of minutes. And it's it's fantastic. And I'm looking at her blood sugar right now. And everything's good to go. So her blood sugar's at eight at the moment. Anyway, I mean, 86 Yeah, we're doing good. Seriously, same hospital, same blood sugar we're doing You and I are we're simpatico here. Right. Does Abigail play any sports? Or what kind of activities does she do?
Julie 31:34
She did gymnastics for a while. I'm hoping to get her back into it when she was on the teeth limb is a little bit embarrassed. Still, I think I think it's because it's so new. So she didn't like that and asking questions. Like they would ask about the G five and they would they would touch and she didn't like it. I was like, You know what? Just explain it to them. Tell them what it is. We're punch one of them. Or that? Yeah, I'm all for that. Like, the one that you? Yeah,
Scott Benner 31:58
kidding. We can't hit people. I'm just saying though, in a big place. If you really just lay one person out, the rest of them probably will leave you alone. Okay, let's not hit people. I think we all know I'm not saying that. But now I hear what you're saying. So she did not like the attention. And now was it? Like, was it Okay the first time but not the 50th time? Or did she just not like it at all. She doesn't
Julie 32:18
like it at all.
So, but she loves to skateboard. So she does that quite often likes to ride her bike. So we've been taking her to the skate park quite often. Except now they're flocking to her. They see the devices. And they're like, Oh, that's that's, you know, pretty awesome. They use different words there. But anyway, I won't use them on your show, because I know it's clean. So, but they see those and they flocked to her and there wouldn't help her. Because they're older kids. And they're like, hey, let me show you how to do this. And so we're trying to see how long that's gonna last before she doesn't like it either. Yeah,
Scott Benner 32:54
that's, that's interesting. You know, Arden, he has played softball her entire life, but she hurt her shoulder. Gosh, nine months ago or so. And the rehabbing of the shoulder took forever and she's having some like tight like muscle tightness and her shoulder still, it's just can't really, she can't really throw. And so she hasn't played softball in a really long time. And it's at, I think, a pivotal, a pivotal moment in her life, where she went off and found other things to do. And I think there's a sincere possibility that one day when she can throw a softball again, the way she's used to that she just might not want to. And we're actually looking right now because you know, sometimes when you let go of activity, you got to replay You know, it doesn't just get replaced with other activity. So I think she's considering yoga. I think that's actually one of the things we're going to do later today is look for a place for her to like, kind of get some yoga lessons and see if she can she's just looking for a way to stay, you know, limber and active and strong. That maybe doesn't involve running around in a pile of dirt for the entire weekend. She's fine. I if people were listening are probably Oh, Scott's probably so disappointed. I'm genuinely not I just you know, I told her I was like, you should just do whatever you think will make you happy. I'm not up for to be honest. Like not playing softball for the last nine months has made a ton of time in my life. So I sort of happy about it to be honest. It's it's very nice not to you know, get up at six o'clock in the morning and drive an hour and a half to some dirty hot place and stand in the weeds. swatting, you know, mosquitoes away from your leg. I'm pretty good with that. Plus, I thought my son to watch so I'm okay. Yeah, but But yeah, so it but her her her conflict is more around people's attention. Now. Would you say that outside of diabetes? Does she struggle with that as well? Does she not like attention?
Julie 34:56
Yeah, she doesn't like it at all. Yeah.
Scott Benner 34:59
Yeah. I think See that? We don't know if we've really talked about it here. My wife has a fairly like introverted personality. But she can, you know, she can deal in the real world. Really well, you wouldn't know you wouldn't meet my wife. I think I've just met an introvert. But if you got to see her, the hour after she got home from a large gathering, you'd see an exhausted person from, like, creating that, that energy, you need to be around people, you know, like, I'm, it just works for me. I get around people, and I'm like, ooh, I'll stay stuff and we'll all laugh and it's fun. And you know, like I can that is energizing to me, like, I, I feel pumped up by that even just talking to you. Like, you know, sometimes I think you can probably hear on the podcast, like, I get carried away when I'm talking. I love talking what is happening. My wife, not so much the exact opposite. And if Abigail does not want to be, you know, intersecting with people to begin with, it's got to be incredibly difficult when they start saying what's this and then touching her and she's so new to it still. And that just it sucks that people feel comfortable reaching out and touching people, you know, like, like that, instead of just stepping back? Is it mostly kids? It's not is it adults, too?
Julie 36:15
Um, the older kids. Okay, it's um, you know, 1617 because that's usually who hangs out at the skate
Scott Benner 36:23
park a park. Yeah. And they're not it's not a judgmental thing. You don't think it's just it's intro
Julie 36:28
now? Yeah, it's interest and and they liked it. She skateboarding? I don't think they've ever seen somebody her age. Like a girl especially. Yeah.
Scott Benner 36:38
And you're not having any luck talking her into being like, Look, they like you. This is fun. And she's like, No, tell them not to touch me.
Julie 36:46
And I'm like, Abby, I'm like, I just explained like, she went to water country. And apparently, she put it on Instagram Live the other day. She's like, has anybody ever had people stare at their devices? And I'm like, Eddie, if they're staring. Look at me be like, hey, if you want to look, ask me questions. That's the type of mom I am. I'm like, Dude, don't don't let people bully you. You know, look at them and be like, okay, what's your problem? Right? are you staring at?
Scott Benner 37:10
Yeah, it's, it's, it's and it is so personal, though, too. Because, you know, I'm just lucky on the other end of this because Arden doesn't care. Right? She'll, if you ask her, she'll show you her friends joke around about it all the time. There's the newest thing that they're doing now is when we get in the car somewhere. So I didn't recognize this was happening. So this happened about a half a dozen times before. I was like, why is this happening? But we'd get together with some of her friends for a movie, or they go shopping or something. And I'm always there, because I'm basically a lady. And, you know, I'm with the kids all the time. And, and we're driving somewhere. And I'd be like, hey, Arden, can you you know, you know, I need you to do some insulin. And she'll sometimes she'll say how much or I'll just blurt out a number or something like that. And I and the kids are all like, 783. And I'm like, Wait, what? And so I'm not paying attention. The first couple times. I'm like, Why are these children randomly saying numbers? But I think it's part of whatever they're doing, right? So the other day, we're on our way to Spider Man far from home, me and the girls. And we're all driving in a car. And I said, Hey, Arden, let's you know, let's get ready. Like what are you thinking about? You know, what are you thinking about eating at the movie? Are you thinking of getting anything? And she's like, yeah, I really want one of those icees. And I was like, oh, great sugar and water will. That'll work. And so I was like, okay, that's let's get some insulin going now then. And her friend goes three, and then I hear six. I went, Oh my god, they're guessing the Bolus, like I finally hit me like what they were doing, you know? And I turned around, I was like, you guys are trying to guess how much insulin we're gonna use? And she's like, Oh my god, Mr. Benner, we've been doing that for so long. It's so much fun. We're never right. And I look back, like in the mirror and they're all laughing and smiling. And that's sort of the level of comfort Arden has with it. Yeah, you know, if her, you know, if if she gets low and doesn't do something about it. I can, you can, like hear her friends like art and Come on, don't die. We got to go. Like let's say you're trying to go out like just drink a juice. So we can leave like that. Everyone's very loose about it. But maybe that's just because she was diagnosed at such a young age. She doesn't know any different and your daughter does, like nines are real, like a real person age. You know what I mean? Like she had a life that she understood before she was diagnosed.
Julie 39:30
Yeah, I think I think so. I think it was that awkwardness. And she was already going into that awkward age anyways. So I hope she'll get there at some point. Yeah, um, can we try to help her as much as we can? Of course.
Scott Benner 39:43
How involved is your like, what's the division of labor like on diabetes in your house? Is it because you have a weird schedule is your husband I would imagine just as involved as you are?
Julie 39:53
Absolutely. Yeah. Now, numbers wise, no. But he has involved, like he, he could change the pump, he can change his XCOM. But it's funny because when I listen to your podcast, and I'm only on episode 101, by the way, I'm just letting you know that right off the bat. I started at the beginning. But we, it's funny when you talk about how you when you look at stuff, you're like, Oh, that's going to be about three units. That's how I am. Yeah. So, like, he went to go get them a Slurpee the other day. And he sends me they have a, like a sugar free Slurpee, although it's not really sugar free. I don't know if you've seen it. Sounds. Yeah, it's based off of Powerade. Okay, if you read the fine print under it, it tells you like, it's, it's like six grams of carbs per eight ounces. And so he sent me a picture of what it looks like. And he's like, so it's sugar free. So she doesn't give anything, right. And I'm like, I'm on a zoom in on the phone, you know, really tight. And I'm like eating. I'm like, No, I'm like, so that's like 48 grams. And for eight ounces. And like, Okay, I'm gonna need you to give her 66 per 60 grams of carbs. And he's like, but it's only 48. I'm like, do it for 60. He's like, how did you come up with that? I'm like, just do it. Because I know, because it's liquid and it's gonna hit way different.
Scott Benner 41:17
Right? And so quickly, so you need to be a little a little stronger up front to catch that that initial slam. And then Oh, yeah. Did you have to adjust out of it later, did that number end up working for you?
Julie 41:29
I'm still learning a lot. So it that one hit really good. I'm still learning how to eat out. Things like a pancreas has helped me a lot with that. Actually. That book, we actually had like a we went out to Applebee's and had like a is almost 100 grams of carbs. And we went out to eat which is rare for us. We don't usually have that many grams of carbs. But she never went over 100 but that meal.
Scott Benner 41:51
That's excellent. Fantastic. Yeah, and that's fantastic. And some of those chain restaurants especially are are hard getting any meal like they really are hard on on you know, you can't it's it's difficult to just guess it's not the same as it would be in your house I guess is what I'm saying is you know that you look at a cheeseburger like oh, that's probably like this, but I don't know they have like magic elixir. They put on food in those restaurants so that it tastes extra foodie. You know, it's hard. It's funny. You said think like a pancreas, which is a terrific book. The author of think like a pancreas is the owner of integrated diabetes where Jenny Smith works. So Oh, I didn't know that. Yeah. So when you add because you're listening in order, which by the way, also, Julie, I'd like to say to everyone listening, when you find the podcast and you love it, you should absolutely start at the beginning, I listen to every episode, because it makes it much easier for me to you know, have those contract conversations with the advertisers later when you guys really download all the episodes. So thank you very much joy. But, but But yeah, Gary, Gary is the owner and the operator of integrated diabetes. And when you'll hear Jenny Smith come on and do the pro tip series, as you're listening through, and Jenny works for Gary at his company. So it was very interesting that you just said that it's a great book.
Julie 43:13
Yeah, it is. It is. And it helped a lot discussion during that meal. I did I think his book he said, you know, for high fat meals, you know, do a extended our Temp Basal for like 50% for like six hours and then wait to Bolus after the meal. And I was like, Dude, this is not gonna work. It worked beautifully.
Scott Benner 43:31
It's great. Yeah, it's really something I I've said before, but I had lunch with a person doing like a very low carb diet. And they had a lot of there was a fair amount of meat and you know, fat in this thing that they ate. And they didn't like Bolus for I think like 45 minutes after they ate. It was really but they put in insulin. I was like, this is fascinating. Yeah, it's it's, it's all really but what you just said honestly, is the right amount of insulin at the right time. Like just have to get it in the where it belongs. You know, where when, when there's a need, you need to meet it with insulin, that's all. Yeah, very cool. Okay, so how are things going overall? Are you feeling good? Are you feeling lost? Is it a slow progression? You know, what would you tell people? You know, if I said to you just Hey, how's this diabetes thing going?
Julie 44:24
Um, you know, once you got on the pump, we learned a lot with the Dexcom has been fantastic. I learned how everything works, how food works for her. We learned the doctor we were originally with, he wanted her to have anywhere between 50 and 60. And he wanted to have 60 plus grams of carbs every meal. Unfortunately for Abby, that didn't work for her, that would shoot her straight up and drop crashed her it didn't matter what kind of carbs they were, how we Pre-Bolus how we extended anything. We learned real quick that did work. So at home, we very low carb, very low. I just don't bring it in the house. We splurge when we go out. And so that's worked beautifully, you know, at this point? Well, I don't know about right now because we have to go back in July. But you know, right now we have her down to right about a 681. c. And it's, you know, it's been great. She averages right about 110, hundred and 20. At night, I keep her around 85 to 100. We're doing amazing. I had to get comfortable. And I think I put my email to you that now my husband knows I'm not insane. Because I'm not I'm aggressive with insulin, and I'm not scared of it. He was scared of it. I'm not.
Scott Benner 45:47
Totally let's say that he thinks you're insane about one less thing. Like, let's not get crazy and say that he thinks it's true.
Julie 45:52
Yeah.
I am insane. And it's cool. So am
Scott Benner 45:57
I but I'm just saying that if my wife decided oh my god Scott's actually right about that one thing. She would not make a blanket statement out loud that everything I've ever said about him wasn't right.
Julie 46:09
That's probably true. I'm crazy. In a good way, though. I think,
Unknown Speaker 46:13
Oh, I believe it too.
Julie 46:14
And I think that's because of the scare tactics that they give you in the hospital, which is probably rightfully so that, you know, hey, here's this kid, they have this insulin can save them. However, insulin can also kill them. Yeah. So he was definitely afraid of it. Where I wasn't because I read what 180 and 200 blood sugars can do to them in the long run. And that was an acceptable to me.
Scott Benner 46:37
You guys just chose a different thing to be scared of. That's all like you picked one thing he picked the other thing he picked, actually his brain picked now over later, your brain picked later over now. And and not necessarily over. You know, you didn't say, I don't want this to happen one day. So I'm going to be dangerous about it. Now, you just said, I think this needs more attention right now. So that later doesn't happen. I listen, is in most married situations, there's someone who you would look to for an illness, you know, just a regular illness. And there's someone who, you know, sometimes does the other stuff. It just happens that way. Sometimes, those things inform no differently than you're having a job as a 911 operator, those things inform how you feel about things. And the guy who's not in the room during the flow, might think, Oh, this will pass or it won't be that bad. And you were a mom, so you have that extra gear. You know, I believe there's a, you know, an extra an extra gear in every every mother, that that just is protective in a way that's difficult to you know, put into words. And you didn't just see now you saw the entirety of it, you know, and that's excellent. I think we all need to see that to be perfectly honest.
Julie 47:57
Yeah. Oh, I just I don't know. So hopefully that you know, that would be I think that would be my only advice is to just definitely not have out of continuous glucose monitor though. I don't think I would have done it. I don't think I would. Yeah, yeah. If I couldn't have seen what it would have done to her. You know, at night, they wanted her before the CGM. They want her around 180 I still didn't keep her there. We would put her to bed around 120. And she would wake up around 120 now what she did in between there, I don't know. But she always woke up. I didn't check her at night. They didn't tell me to Yeah.
Unknown Speaker 48:39
I hear you. Um, so
Scott Benner 48:42
I do agree with you. I sat with a teenager, two nights ago, you know, 20 1920 year old guy. And he is just pins and a meter. and has been for like seven years since he's been diagnosed. And he I was at I was with him at a meal where we were going to talk about, you know, I was basically going to give him a crash course in the podcast because we know them personally. And when he took out his meter and tested his blood, and then made this, you know, injection bolus for his meal. My brain was like, Oh my god, I wonder what's happening now. Like, how does this wasn't enough for too much or? And I got I got transported right back to what that felt like. And I because I hadn't been around that in a really long time. You know, that idea of something's going on right now. It's either right or wrong or indifferent maybe. And we have no idea and I said I was like when will you check again? Next thing is like before bed. I was like, it was like seven o'clock. And I was like, oh my god. No, no, no. And and it's so but he's completely comfortable that it's his life and it's how it works for him. is a one He's not where he wants it. It's not bad and it's not good. And, you know, he came into that restaurant with a blood sugar that was almost 200. And that seemed incredibly normal to him. And I just thought, wow, like this is, this is how people feel, you know, when they they don't know any better. And they don't have this technology. It's it's just it's very, it was just very normal for him. Yeah. I just I guess I have to I guess I'm looking for it from you, because you're so new to this still? Is it? Like, how would you describe the difference between before you could see and now?
Julie 50:40
Night and day? I mean, once she was on the two different insolence, I checked her more regularly, not at night, I still I don't, I guess it comes from the mentality when I had babies. You don't wake a sleeping child. I never woke her at night ever. But during the day, I wasn't one to just check her before a meal. And never check her until the next meal, we would check before we would check you know, roughly 30 minutes after and then we would check her an hour after and probably two hours after I wanted to know what was happening. So her poor little finger tips were brutal until we got the G five.
Scott Benner 51:20
Wait, I want to stop you about the overnight thing for a second. Because that's fascinating to me. Because I I can't it's hard to wrap your head around I and why does it matter what your blood sugar is when you're awake, but not when you're asleep? And I'm not coming down on you. I see a lot of people do that. And it's fascinating like the this simple idea that just stops you from looking like well, she's asleep. So that's it, you know, but but those things you were incredibly worried about during the day you just were you magically not worried about them when she was asleep? Or did you just not think about it that way? Or can you describe that because I've never asked anybody right out and you brought it up. So I'm interested in to kind of dig I don't think
Julie 52:01
it's further that I wasn't worried about it. I think it's that there was always a cut off that I didn't give her insulin. So I knew it wasn't active in her body. I knew it wasn't working. So there wasn't really anything that could cause her to go incredibly low. I knew what I was sending her to bed with. And if say she was 110 I knew I was going to give her some chocolate milk or I was going to give her something to bring her slightly up was less of a chance. I knew I just knew how our body worked. There was less of a chance that she was going to go low. And she never did. I mean, let me even rephrase. I'm not gonna say she never did. Because I didn't know. Right. But she never went to a point that she didn't wake up. And I know that's horrible to say. But I was. I mean, I work. You know, between 60 and 80 hours a week, my husband worked 40 hours a week, I go to school full time. So waking up every hour to two hours. And I know it sounds horrible. I love my kids with everything in me. We just we just can't.
Scott Benner 53:05
Yeah, no, so you just use a little bit of chocolate milk or something like that. And and we're gonna kind of err on the side of caution now. Now that you have gear that was very honest of you. By the way. Thank you so much. When now that you have a CGM, would you let her be 150 all night?
Julie 53:23
Absolutely not that interesting.
Now she stays it's like I said between 85 and 100. And she's pretty steady. Right? It's a very rare occasion. She goes well at night.
Scott Benner 53:34
My point is, is if you see a 150 at two o'clock in the morning, are you getting up and correcting it?
Julie 53:41
Yes, yeah.
Yeah. Usually, usually I'm at work. And I'm waking my husband up, like get up and fix that. You must love that. Yeah,
Scott Benner 53:51
you must love waking up to do that. I my wife looks delighted. Even in her sleep. She's like, Scott, that thing's going on. That CGM is going off? I'm like, oh, I'll get it.
Julie 54:01
Yeah, he doesn't hear it. He sleeps like the dead it can be going off right next to him. And I still have to call to wake him up.
Scott Benner 54:07
Oh, I believe that I I have trouble hearing it sometimes. And it gets different more difficult as you you know, like anything else. I sometimes like in a time when I when I was growing up, I lived on a major roadway, like my parents were broken. You know, our house was like on a four lane street that constantly had traffic. And you could invite somebody over to the house that had never been there before. And you could see the look on their face was they could just hear the traffic going by the entire time and those of us who live there, we didn't even hear it. Like it just became background noise, you know. So it's just what, you know what you just said, but like I said, was incredibly honest about like, Look, I needed to sleep, there's no way around it. So we make our blood sugar a little higher so that everybody can do that. And then the minute you saw what that really meant, like in real terms, like looking at it on a graph. He said, oh god, I can't let this happen. I'm gonna push it Down here and find a way to do this. But you couldn't have done it blindly. Because because it just would have seemed too dangerous. And it very well may have been to put her blood sugar at 80 and hope that it like stayed there all night without being able to check it. It's a very unfair disease. It sucks that we're standing here saying that like without this technology, I've got to err on the side of caution. And what that means is a raise blood sugar and everything that comes with it. It's not fair. It's just it's I feel like I just felt incredibly sad for you as you were saying it and yet I did the same thing years ago. And at the time, I did not feel sad for myself. I just thought I was doing the best I could, you know?
Julie 55:42
Yeah, Dexcom should be standard issue or some type of CGM should be standard issue when you leave a hospital.
Scott Benner 55:48
On this podcast, we don't talk about other CGM. But I hear what you're saying. And I'm just kidding.
Julie 55:54
Yeah, but it's, I mean, they should it should be standard issue. Um, oh,
Scott Benner 55:59
no, I've said it before. Like, if you had a heart issue, they'd put you on a heart monitor, they wouldn't go, let's just hope your heart's Okay. Go ahead home. And we'll just hope, you know, like, it's, now this stuff exists. And you see what it does. And you can also see what happens if someone lives so long without it. And all of a sudden, you give them the information, it can be overwhelming. You don't I mean, so just like diabetes itself, and all the other things that come with it. I say get it early. It's everything's uncomfortable in the beginning Anyway, you get accustomed to it, you'll learn as you grow, and then it just becomes a, you know, a simple part of your life. To me, that's the best way. I mean, obviously, anybody can do whatever they want. If you're listening right now, you're like, I don't want to see gentlemen, I'm doing fine. Like, right on, I don't care. You know what I mean? Like, do what I need to do. I'm my experience. So. But I agree with you. I really do. I just, I don't see, I know for certain that the things we talked about on this podcast management wise become much more difficult and intensive. Without a glucose monitor, then you're testing more frequently, you're probably not being as aggressive as you want to be, which I'm assuming leads to more like misses on insulin and higher blood sugars and things like that. And how do you correct that blood sugar when you don't know? You know, like, like, when you don't have that information? Like how do you make this like, like bold decision to put in a bunch of insulin? To get a head of a Slurpee get on a man? Something like that?
Julie 57:27
Absolutely. Yeah.
Scott Benner 57:29
So when you guys make insulin, you don't when you're not at home? Does he always contact your husband always contact you and say, Hey, this is dinner. What should I do here? Or does he get it? Get it sometimes on his own? Or do you guys talk about it
Julie 57:42
every time? Not always know. He's gotten much better at it. Especially since we've gotten the pump. He's I don't want to talk bad, but he would agree he's bad at math. So when we were on MDI, he doesn't, he doesn't like math at all. But once we've gotten the pump, and it kind of does for him, he's he's fine with it. But if he's eating out, and it's not that standard meal, because I cook every day, like we have a two week menu, I cook meals every day. So he's got the carb counts. He knows what they are. That he's fine with that if he's at taking the girls out to dinner like they're going to Busch Gardens this weekend. I'm sure I'll get phone calls. Yeah, like Hey, hey, we're,
Scott Benner 58:28
yeah, that's activity and heat. And then I'm assuming some weird soft pretzel. It's probably not even flour because it was made six years ago and it's for sale at Busch Gardens. And you know, like all that other stuff. Ya know, there you need a little bit of a I don't know little Zen little ninja little judges, whatever you gonna call it? Right? Yeah, just that kind of feeling where you can just go out. I know what that is. I in this situation. That's very cool. And texting I would imagine is like a huge part of it.
Julie 58:55
Oh, yeah. We're hoping to get that in the school next year. We'll see how that goes.
Scott Benner 59:00
Oh, you're gonna you're trying to manage the way we do like, just with the kind of direct contact? Is she going to the nurse right now?
Julie 59:07
Um, yeah. And that was that was mostly on the it wasn't anything with the school. The schools actually phenomenal. The doctor was the problem. So we've since changed doctors.
Scott Benner 59:19
Gotcha.
Julie 59:20
Oh, yeah. We like our new
Scott Benner 59:22
doctor a lot. A wonderful note from a person last night. That said, that thing we talked about all the time happened to them. They were like, I would just heard you talking about this in an episode yesterday. I it happened to me, I have my great agency and my doctor yelled at me and told me to make it higher. And then the rest of it said so you know i? I have another appointment three months from now, but with a different doctor. I was like, Wow, good for you. Like that was just that person did not take that crap for one second. Like I've been working at this so hard. I randomly bumped into a podcast like you can't take this from me like I'm an adult with diabetes. Like I just got this right and you're gonna come along Don't say no, I'm not doing this with you and didn't even didn't argue with them just was like, Yeah, okay, thanks. Thanks. Thanks. Got their prescriptions left change doctors.
Julie 1:00:10
Yeah, I think that's the only thing I would you know, advise any, is stick up for your kids. But if your kid you know, I think are the doctor we had, he was fantastic. Please don't get me wrong he's a fantastic doctor, but he thinks every kid is the same. And it came down to our fork in the road was during sLl to shear I don't know if you're familiar with sLl in school that standardized testing that Virginia has tried
Scott Benner 1:00:36
to get out of luck. Now I have to put a beep in dammit.
Unknown Speaker 1:00:42
That's what I thought.
Julie 1:00:45
It is kind of what else me but it's standardized testing in Virginia. And it's a massive test that they prepare for all year. And Abby has horrible anxiety with tests. And her blood sugar's go through the roof. It happened last year. And and I tried to get them to manage it in the test, like having have her cell phone with the proctor where I could text and say, Hey, she needs to do this. So she wouldn't have to leave the test because the way it works, they have to stop the test for everybody. She has to leave. And they keep the test stop until she comes back. That's her she was ridiculous. Yeah, that's not right.
Scott Benner 1:01:25
That's what Arden does. Arden has the has the phone in the test. I will say this. It took a meeting. It took me getting a person in the on you know, at the school level on my side for the idea that person had to go to the state and advocate for me the state actually listened. And now in New Jersey, if you live in New Jersey, guys, you can press now for that because we did it now they're okay with it. So you can do it too. But yeah, Arden's phone stays with the proctor and I'll text and be like, you know, just point six, the proctor season walks over to where holds the phone up, and she gives herself insulin and you know, she does the point six or whatever it is, and she's on her way.
Julie 1:02:09
Well, the school had no problem with it. It was it was her medical plan. And so I had to have the medical plan change. And when I called him and asked, I was like, Hey, can we get this change? Because you guys were planning on making her independent next year anyways, that middle school, he was like, I'm not making her independent Middle School, probably not in high school. I'm like, whoa, wait a minute. What? Wait,
Scott Benner 1:02:32
what somebody's gonna end in this situation is gonna be me from you.
Julie 1:02:36
Right? And I was like, I was like, Okay, I was like, well handle that the next deployment when I'm face to face with you. However, at this moment, I was like, she goes up to three and 400. And he's like three and 400 for a 30 minute test isn't a problem. I was like, it's not a 30 minute test. It's a four hour test for the next four days, four times in a month. And he's like, that won't hurt her. I was like, Oh, no, I was like, this is a problem. I was like, this is a serious problem, it will hurt her.
Scott Benner 1:03:05
I don't understand if your doctor doesn't know that. Or if your doctor just is trying to comfort you and thinks there's no way to fix it. But I would just say to anybody, if you if you're not involved with a medical professional, who's willing to sit down and figure something out that fits your life, you're with the wrong person. Like whatever it is, like, forget diabetes for a second, just you need to be able to say, look, I have a specific situation. This is it. Let's all put our heads together for a half a second come up with an idea, especially you who came up with an idea. You're like, Look, this will work. I know for sure. Because there's a guy on the internet that told me it worked. And so you know, I get that part. Maybe you don't tell him that part. Right. But but like I had this great idea. And this is gonna work, all I need to do is like change this sentence here in her medical order that and then the school will go with it. And that's it. And and to tell you that maybe I won't let her be independent, even into high school. Who is he? I don't like that at all. That may I guess, is this doctor over? 50 years old? Yeah, yeah, you need younger, younger, more agile thinkers. Not people who have been doing lacks the same way for decades. You know?
Julie 1:04:14
I think the problem is, is he thinks that he's the only doctor in the area and probably for people that way he is but we live so far. West that I drive an hour and a half because that office is it is so I go an hour and a half the other way I hit Richmond. Gotcha.
Scott Benner 1:04:30
So he doesn't have a monopoly on you. You're already you're already making a day of it. So right. I might as well make a day of it and go talk to somebody else. Boy, that's just that's terrible. I hope that person is listening. And if they are, I don't like what you do. But for everybody else, stick up for yourselves. do what's right. When somebody won't let you do what's right. Find somebody who will there always will be someone out there. And I mean, listen, Joey's driving an hour and a half, which by the way, oh my god. I'm so sorry. I think our endo is like eight minutes from the house as I'm driving all the way over here, you know, so
Julie 1:05:08
you probably have more traffic than I do too, though, so I don't have much traffic.
Scott Benner 1:05:11
Oh, there's something here. Yeah, I hear you. So is that did Abigail make it through the whole hour in that room watching you do this?
Julie 1:05:21
Yeah, she's still there.
Oh, no, no, no, she left the board. She bailed on.
Unknown Speaker 1:05:27
How long did she make it?
Julie 1:05:31
About 40 minutes. She did pretty well. She's on her phone.
Scott Benner 1:05:33
Nice. That's nice. I was gonna try to say goodbye to her if she was still there. But she's gone. We've done a terrific hour together. Thank you very much. Are you still nervous now? Or has it passed?
Julie 1:05:44
No, no, I'm good. I'm good.
Scott Benner 1:05:47
Should we start over? You can really jump into it right now. Trust me, that doesn't go well. I had a technical problem once and we I literally interviewed a person and then had to interview them right away again right afterwards. And it's tiring in the second hour. I'll tell you that much. Joy, just I really appreciate coming on. You were incredibly honest about some difficult things that I think people will be will find a lot of commonality. And I think he helps some people today. So thank you very much for doing this.
Julie 1:06:17
Oh, good. Thanks for having me. Absolutely.
Scott Benner 1:06:21
Huge thanks to Julie for coming on and telling her family story around type one diabetes. She was incredibly honest number of times. And I really think that's why the podcast is, is what it is. It's pretty cool that people are willing to come on and do that. So thank you, Julie. Thank you all so Dexcom and Omni pod for sponsoring this show. I appreciate it greatly. dexcom.com forward slash juice box, my Omni pod comm forward slash juice box. There's also links in your show notes at Juicebox podcast.com. Check out the sponsors. Click the links, please. And thank you. Alright, guys, it's the end of April. I don't know about you. We've now been inside for 123456 weeks, three days, six weeks and three days. Quick. Math tells me six times seven is 4242 plus 345. By the time you hear this, it'll be tomorrow. Let's call it 4646 days in my home 46 days in your home. Hope you're not getting stir crazy. I found myself actually bored the other day, just bored. And I sat down. I was just like, Alright, I'm gonna stop, like, ignore the feeling that I'm always supposed to be doing something. sat down. Kelly sat down. Cole sat down, Arden sat down. We're all sitting around the table doing nothing. We're there for 10 minutes, I swear to you, people are quiet. Some people are looking at videos working on homework, just sitting I was reading something. I'm thinking about getting a new grill, I was reading about a grill and art and goes, Hey, this is really weird. What are we doing? It shouldn't be weird that we were all just sort of sitting together for a couple of minutes. So you know, interesting. Anyway, hopefully we'll all be out and about soon, but not before it's safe and right to do. But definitely before I give in to the odd impulse to buy a drone. Now, keep in mind, I could never fly a drone. I know for 100% certainty that if I had a drone, it would go up in the air and turn upside down and crash right into the ground. I have no spatial awareness around things when they get out of sync with me. Like I can drive and I mean, but that's because I'm looking through the car. The minute you point the car the other way and keep me in control of it. Not going to go well. So I have to fight off the urge to look into buying a drone about every three days during our shut in period. I don't know why it is I think it's something in me that thinks it would be amazing to fly it away and be able to see things which maybe it would be but the the intelligence side of my brain that knows that I would just crash the damn thing in five seconds. Plus, I don't want to buy it. It's very expensive. There is I can tell. Anyway, that is one of the urges I'm fighting off during the during our time of incarceration. I wonder if you're not doing the same if there's not something that every day you're stopping yourself from buying just like I don't want this I don't need this but so bored. But then you know, I realized it would come in a box and then what would I do and have to redo the expert What do you people do do you spray the box with Lysol or wipe it down with wipes or something and then did like a special place open boxes in the house that then gets like completely wiped down in the box gets you know incinerated right away. You'll laid on fire and wash your hands like up to your elbows like you're gonna do surgery. That's that's the get the mail, right? That's the meat the Amazon guy. So anyway, that's how I talked myself out of it. I'm like, I don't wanna have to unbox it. But the truth is, I would crush it tree. Okay, guys, I really appreciate that you're listening. podcasts are down. Some say 17%. during April, do the Coronavirus This podcast is not down nearly that much. I do miss you guys commuting a little bit. There's a couple of shows in there. You're not catching because you're at home. But uh, you know, I respect you. I respect that you're, you've got a different situation right now. We'll get back into the car one day and start listening. I'm good. But I don't have a 17% drop is what I'm saying. And that is in large part due to you I so I really appreciate it. Please continue to share the show if you're enjoying it. And I just really appreciate you all. Please stay safe. Wash your hands.
This is a bonus episode and was not sponsored. That said, these are the show sponsors.
Please support the sponsors - Contour Next One
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!