#367 Utah Jen
Let's not quibble about juice
Jen has two children. One has type 1 diabetes and the other lives with Dent disease.
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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 0:03
Hello, everyone, welcome to Episode 367 of the Juicebox Podcast. Today's show is with Jen, Jen and I have known each other for a while. She's the mother of a child with type one diabetes, and the mother of a child with dengue disease. She's also someone whose private conversation with me turned into something that I talked about on stage when I'm speaking. I can't tell you the twists and turns that this episode takes. So every time you think, Oh, this is what this one's about, it'll change. Please remember, as you're listening 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. Don't forget, if you'd like to share the diabetes pro tip episodes with a friend, you can actually just send them to diabetes pro tip.com. Nice and easy. Of course, you can always get them to subscribe to the podcast, but diabetes protip.com will show them those specific episodes. And if you have a great doctor that you'd like to share with someone else, check out juice box docs.com. This episode of the podcast is sponsored by Dexcom, makers of the GS six continuous glucose monitor, find out more about the dexcom G six@dexcom.com. Ford slash juice box. And if you'd like to get a free, no obligation demo of the Omni pod tubeless insulin pump sent directly to your home. All you have to do is go to my omnipod.com Ford slash juice box. It'll be there as quick as the mail can get to you.
Utah Jen 1:55
My name is Jen. I live in Utah. And I have a little boy who is eight. He has type one. And that's why I'm here.
Scott Benner 2:06
Ah, that's not why you're here. Here, Jen, because you are one of the few people who I've communicated with in the past who have a title. All right. You are Utah Jen. That's a mutagen. There's also a woman in Pittsburgh, her name is Pittsburgh. This is how I keep track of people. She doesn't even get her full name. She just gets Pittsburgh,
Utah Jen 2:27
especially Jen. Because there's so many of them.
Scott Benner 2:30
Well, that ended up being one of the problems is that at some point I was corresponding with enough Jennifer's that I was just like, I don't know who you are. And I can't like I'm scrolling back going like who is this? But your story's specifically exciting for me to tell you and you don't even probably know why. But I'm gonna start by asking how things are now for your son.
Utah Jen 2:55
So good. Scott,
Scott Benner 2:57
tell me about how it goes now, like what's a regular day like?
Utah Jen 3:01
So regular day is, you know, typical when he wants the food, we, I don't sit there and count all the carbs like I used to and like be freaking out about it. I kind of look at the meal and I say okay, Hmm, this looks about you know, 3040, whatever, 4050 carbs. And I say, Okay, let's do it. And so can we kind of do it together because I'm trying to help him to get to that point. And we, we've learned the extending, we've learned the, the temp basals. We've learned so much. And he's now able to pretty much hopefully if things go well go throughout his whole day, and not really think of diabetes. That's very, which is a huge step from where we first came from. Right. And we're gonna get to that.
Scott Benner 3:53
Yeah. What What is a one c? Can you say?
Utah Jen 3:57
I'm 6.2 right now.
Scott Benner 3:59
That's lovely. Good for you. Okay, so am i right to say that we found each other? You found me through Facebook?
Utah Jen 4:08
Yes, I did. How did that happen? Um, I was just, well, wait a minute. No. So I was listening to a different
diabetes podcast before.
Scott Benner 4:18
Do you still listen to that diabetes podcast? No. Oh, keep going?
Unknown Speaker 4:24
I don't,
Utah Jen 4:25
I can't. It just doesn't. It doesn't click with me. And then I found you. And I'm like, Who is this weirdo? When I first started listening to you? I thought you were I thought you were super quirky. And I and I'm like, I loved it. Right? And then I just got hooked. And then I'm like, you know what? I'm the type of person where I don't I kind of think we're all together in this, you know? And so I'm like, I'm just going to email him, or I'm going to find them on Facebook is what it because he kept saying, go to my Facebook page on the web on the Juicebox Podcast and so I went to the Facebook page, and I think I texted you on Facebook or instant message you and said, Hey, this is this is our deal. I don't know what to do with this. And we were just doing we were still MDI at that point. And then you kind of reached out. I mean, you were so quick at reaching out to, well, like, Oh, my God,
Scott Benner 5:21
that's lovely. It's because you were in such a situation that made me feel like, Oh, can I really ignore this and let this kid's blood sugar before 100? And I felt like I couldn't do that. So do you know that what comes next? That conversation we had and what we did that afternoon was a Saturday afternoon that I speak about that without your details at every live event? I do. Do you know that you
Unknown Speaker 5:44
Yes. dearly. Use? That is awesome. I use that
Scott Benner 5:49
example of what we did together to give people a way to think backwards about things. So like, what I mean by that is, I think normally people think about, you know, you guys have heard me say like how insulin affects the number, right? Like I give insulin to make the number go down. I think that's the extent of how some people think of management. And I like people to be able to think about how food can impact insulin, how food can impact the blood sugar, like, you know, the number like all these different kind of ideas. So I tell them the story of you and I on the phone. And I would love to go through it now and get your recollections of it as we go, because I only had my side of it. So
Unknown Speaker 6:31
yeah, I'll start
Scott Benner 6:31
by saying that I recall, Jen, which even feels weird, she really is Utah, Jen. But I recall, we were on the phone. And my wife and I were dressing to go to where are we going? Oh, we were taking Arden and her friend to see the Nightmare Before Christmas projected on screen while an orchestra played the background music to the the incidental music to the movie through the whole movie. So just the movie and the the words would come out of the speakers, and they would play all the music live, which is was really kind of cool. But we were getting dressed to go to that is my point. And I remember my wife being like, Hey, you don't have time to talk to somebody right now. And I and I showed her your son's graph. And I was like, are you sure we don't have time for this? And she goes, Hey, all right, God, you call her and I was like, okay, so I remember the first thing you told me was like, I'm like, How did this happen? It was Cheerios, right? Mm hmm. Ah, okay,
Utah Jen 7:37
Honey Nut Cheerios.
Scott Benner 7:38
So your kids blood sugar was pegged over 400 on his Dexcom graph? Oh, yeah. And I basically launched into what I think of is probably the same 30 minute conversation I would give anybody in that situation. Do you remember at all what I said at that point?
Utah Jen 7:54
I kind of I mean, it's, it's, it was a little bit of a blur. It scared the crap out of me, honestly. Right. Um, so I think that you said something like, we're going to do something that is going to be crazy, but we're gonna do it, and we're gonna figure it out.
Scott Benner 8:09
Do you want to do something potentially dangerous for your child with a stranger on the internet?
Utah Jen 8:14
We've never met. And do you trust me? And I'm like, Well, I trust you. So let's do it. And you're like, well, I can't guarantee you.
Scott Benner 8:21
There's the tone of Jen's voice in that moment, which was really, I have no other choice. Like, I'm, I'm clearly so terrible at this, that I, I'll listen to anyone like, I think I actually could have come at you right out of a prison door. You know, wearing a suit from 30 years ago, holding my sharpened spoon in my hand. I've been like, I could help you if you want help. And Jen would have been like, okay, I'll try. You know, she just she did not have any where else to go.
Utah Jen 8:47
And the frustrating thing, Scott is that I'm a nurse. And so I was like, What the hell am I doing wrong? Like, how can I not understand this? And that was frustrating even more. Yeah, because I'm like, this is my degree, right? Like, you know,
Scott Benner 9:01
that of the people I intersect with nurses. I swear, I think I have enough data now to say this out loud. Nurses, as parents of people with type one diabetes struggle, maybe more than anyone else in the beginning.
Utah Jen 9:14
Totally would make sense. You know why? It's because we look at it and we have to double check insulin in the hospital. It's a very, very high risk drug. And so whenever you're double checking it, and you're giving it to somebody that you don't know, and you don't know how they're gonna respond to, it's a big deal for a nurse, right? And so when we're like pumping it into our kids, or like,
Scott Benner 9:34
it's this thing that you've been doing forever is super, super dangerous. And you've you've there's actually procedures in place for you to treat it like it's very dangerous.
Utah Jen 9:43
Oh 100% No, so you're
Scott Benner 9:44
in your house with a little piece of plastic.
Utah Jen 9:47
Yes. I'm sitting here injecting a full on frickin unit into my son and I you know, doing that in the hospital, I have to have two nurses double check the exact drying up the exact you know, name And whatever of the insulin and the order and I get to process Yeah, so that makes sense.
Scott Benner 10:06
Yeah, at home, it's just like, hey, here we go. It's like drinking lighter fluid, it feels like more. Okay, so, Alright, so here's my favorite thing. So whatever I end up saying to Jen on that call is me trying to cherry pick probably the most salient couple of details from the pro tip series, and jamming them in your head like ideas that you'll be able to fall back on or that you'll be able to go to the podcast and you know, maybe make more clear for yourself. But then, what happened at the end? Because was crazy, because at the end, I said, Are you okay? And she's not like, she's clearly not, you know, and so I'm like, I'll keep texting with you or something if you need me to. But then I said, Okay, so what are you going to do now? Like thinking that Jen would take some of the information that we spoke about, and put it into practice? But But Jen, what you said was, well, he's hungry. So I'm gonna give him lunch. And yeah, and I looked into kids, blood sugar was still 400. I was like, and I'm like, No, like, I think you were the first person that I actually just ever said, No, no, that's wrong. You got that wrong. Sorry. That's not what we're doing now. So that I said, let's do want to do something crazy with a stranger on the phone. And you were like, all right. And I said, Okay. And I remember saying to you, how much insulin makes this 400 100? And you started talking about ratios? And I said, No, no, stop that. Stop. I don't care. I said, obviously, your ratios don't work because blood sugars for so. You know, just you guess like, ballpark it in your head, just gas. And I believe you said a unit. Yeah. And then I said, Okay, think of his lunch. How much insulin Do you think his lunch is gonna take? And I swear it was fascinating, because you started going? Well, he gets one unit purse, and I was like, Whoa, like five seconds ago. I just said no to this. And it was just interesting to see. And so you guessed it a unit and a half. And I said give him two and a half units. And I'll never forget you said and then it'll eat and I was like, Oh, no, then we're gonna wait. And that 45 minutes.
Unknown Speaker 12:13
Oh my god,
Scott Benner 12:14
I thought you were gonna die of a stroke or an aneurism a number of different times,
Utah Jen 12:20
saying, I was walking around my house going, Oh,
I'm sorry. I can't swear.
Scott Benner 12:25
Oh, keep cursing. We'll turn it into a protein after dark if we have to. So yeah, so the my recollection of it is that it took quite a time for him to even diagonal down out of that high number. And then he he was drifting for a while at a diagonal down number. And the way I tell it on stage is I'm like, you know, she gave her the two and a half, you gave him the two and a half units. And it took a while. And I felt like about 45 minutes later, we were in a freefall, like in the two hundreds, right?
Utah Jen 12:56
Yes. Like double down? Yes. Yeah.
Scott Benner 12:58
Like isn't really, really, really falling. And I said, and you I remember saying, hey, it's okay to make the lunch now. And the funniest thing that's ever been said to me on the phone is you said, I made that lunch a half an hour ago.
Utah Jen 13:13
It's sitting on the counter
Scott Benner 13:14
sitting on the counter. And I was like, watching you really remember this conversation? That's great.
Unknown Speaker 13:20
Oh, how could I forget Scott? Are you kidding?
Scott Benner 13:23
So? So anyway, for the kids, you know, he's eating. And now I'm saying things to Jen that I'm sure don't make sense. Like, Hey, watch the CGM. You're gonna see how the food is impacting the insulin and how it's gonna start, you know, leveling out and coming down and it'll slow. Well, I want to say, around 115, two arrows down. I thought, Hmm, I should have let him eat a little sooner. And I was like, but to me, that was no big deal. And I didn't want to make you feel like a big deal to you. So I said, Hey, john, could you do me a favor and give him a little bit of juice? And you spoke words after that, that I laugh out loud? When I say I it's the biggest laugh in my talk. You remember what you said?
Unknown Speaker 14:07
that'll have me juice? We don't keep juice in the house. Yeah, we don't. And there's a pause
Scott Benner 14:11
on my end. And I must have made a face. Because my wife goes, What's wrong? She mounts what's wrong to me? And I cover the phone, and I look at her and I go, I just killed a kid in Utah. And she's like, what I'm like, Oh, hold on. And so I put the phone back up to my, to my ear. And I said, Okay, Jen. Well, what we're looking and you started saying we treat lows with Skittles,
Utah Jen 14:37
like Skittles, or jelly beans or some something like that. Yeah, yeah.
Unknown Speaker 14:40
And I was, like
Utah Jen 14:42
I said, then I said, but I do have a little bit of lemonade.
Scott Benner 14:45
And I remember saying, Jen, let's not quibble over what juices please.
Unknown Speaker 14:52
I don't know what I was thinking.
Scott Benner 14:54
No, there's no juice here. All we have is lemonade with sugar in it. Huh? Damn. I guess he's got gonna die. And so and so then you were like how much and I remember saying, I don't care, just give them a little bit. Like, I just want to take the speed out of this arrow a little because I had real comfort that the food was in that the food was going to impact them. Listen, I don't know how good your guests was of a unit and a unit and a half, right? Like, um, just based on his weight and what he was doing and what you were planning on feeding. I thought that seems reasonable.
Utah Jen 15:26
Right? It was like a peanut butter and jelly, I think is what he was having with like some berries or something.
Scott Benner 15:30
Gotcha. And so and so the juice did it the juice. Since Jen's cursing all over the place, the juice took the air out of the arrows, right, and it started to slow down. And I don't remember the timing anymore. But we started catching a diagonal down arrow. And then eventually, I think I'm going to be exactly right about this number, his blood sugar level off at 77.
Utah Jen 15:51
Yep, right, right.
Scott Benner 15:52
Yep. Okay. And then the first thing you said to me was, should I give him some Skittles? And I was like, Jen, it just took me an hour and a lot of work of magic over a telephone to get this kid's blood sugar from 400 to 77. With his meal and him, please do not do that. Just be okay. And I remember you feeling nervous. You were really nervous, though. Mm hmm. Why? What about that number made you nervous?
Utah Jen 16:18
I think I was freshly out of diagnosis. If I'm remembering right, I think that was in the winter, because my husband was at work as a ski coach. And at that time, I think we were probably only like, four months out for four or five and I was scared of that number. Yeah. And I don't. Now Now I do. I look at it. And I'm like, Oh, he's beautiful at 75 level, right? Like, perfect. That's where I probably am right now, too. But when I look at like my mom, she is very nervous at him being at right. And so I think it's just that. Oh, my gosh, is it going to turn in? Is it going to just drop when now that I know that? The food is like like you explained that tug of war, the food and the insulin or tug of war ring so well, that it's just gonna stay that way? Like it's not it's not going to drop at 75 of his level. Yeah. And so once I learned that, but that that was the key. I remember my husband came home that day, and I'm like, Oh, my God, let me tell you about what happened today. I called a stranger
Unknown Speaker 17:29
on the phone and let him give my son insulin. You should leave me and take these children.
Utah Jen 17:36
But he respects you so much. And he's like, holy,
funny, you know, and we in an ever since then, I talk about being bold with insulin. I mean, seriously, right? Like this. That's like, catchphrase right there. Because now I'm like, Okay, well, you know what, I know what to do. And, and now when I dose him, I'm not afraid. And I usually go much higher than I think. And we keep them beauty, like nice beauty lines. And of course, I'd like his agency to be lower than it is right now. But I'm, I, I think you remember, I have other things going on in my house in my home too, with my other little boy. And it's like, my whole day is keeping my boys alive and happy. Pretty much. And so it's like, but we're but we're moving in that direction. And
Scott Benner 18:32
we're doing terrific. And and we can get to the rest of the second. But I want to jump back for a second to he's 77. You were uncomfortable. I could tell in your voice. You were very uncomfortable. I wasn't following his CGM or anything like that. And I was about to embark on a 45 or one hour drive to this place where we were going, right? So I gave you my number, like my cell number. And I was like, it's gonna be fine. Don't do anything. And, you know, I hung up the phone. It wasn't. We were not even to where we were going yet. It was a half an hour, maybe 40 minutes later, and you texted or called I think you might have called because I think my wife picked the phone up. And you're like, he's 220 diagonal up. And I'm and so my brain. Like before I answer, my brain runs through this litany of ideas about diabetes, these things that I understand. And I think that's not possible. Like that's just not possible. And I'm like, What happened? Do you remember what you said?
Unknown Speaker 19:29
No,
Scott Benner 19:30
you said I gave him some Skittles.
Unknown Speaker 19:34
I was like, Oh,
Unknown Speaker 19:37
my God, I remember now.
Scott Benner 19:41
So I was like, Listen, I'm about to go into this thing. I can't help you with this again. And then what happens next is sort of interesting because between then and now, I had to round about guess I'd say that we've spoken four times and texted a ton in the last couple of Is that fair? Okay. All right. You resisted this information more than any person I've met so far in the beginning. And I'm wondering if you're aware of that? And if so, do you know why?
Utah Jen 20:15
That I know? I don't think so you don't
Scott Benner 20:17
feel resistant? Did you just struggle with it more? Like? Like, why? Like every time you got a hold of me, I was like, Oh, it's almost like we didn't talk last time. But yeah, were you just struggling to put it into place? Because you're in place. Now. That's why I asked you where you are announced that we can kind of work backwards to it. What was your process from that day, to where you are now? Like, what did you figure out? on your own, that helps?
Utah Jen 20:40
Boy, the only thing I can think about, honestly, is going back and thinking about the last two years of my life have been a complete blur. And to the point where I have been, I was in a car accident in March, and it kind of threw me over the edge. And I've been told by my doctor that I've been living in this fight or flight response mode for the last two, three years of my boy's life. And yeah, from from what we've been dealing with. And now I'm able to look back upon it, because I've been off work since March. And I've been able to really focus on my mental health and my anxiety and mindfulness and you know, changing everything in my life. And I'm actually able to look back on the two or three years and go holy, I don't remember half of it, because I've been living in this literal, high stress, trying to survive every day. You know, working full time as a nurse, there's a high in a high stress job, taking care of my little boy trying to figure out this diabetic stuff, and then dealing with my other little one, too, and trying to keep a marriage alive. And you know what I mean? And
Scott Benner 22:03
so makes a lot of sense.
Utah Jen 22:05
Yeah. Now I look back on it, Scott, and I couldn't freakin figure it out, either. I'm like, why the hell? Am I not getting this? I am not stupid.
Scott Benner 22:13
Because every time you got a hold of me, I would feel like Did someone like Shake what I said out of her head? Yeah, like, like I couldn't. Yes, there was a time I was sitting outside of a store. I forget what I was doing. And I was talking on the phone from my car. And I just thought, like, I started thinking, how long have Jen and I been doing this? Like? Like, like, like, how? How did she just asked me that question. I can't like it was fascinating. Tell me about just for a second, your other child has a different medical issue, which What is that?
Utah Jen 22:45
Yeah, so I'll give you like a down and dirty on it. So um, so my little boy who was three and a half at the time, my older one FOSS was not diagnosed at this time. So this was back in, I don't know, three and a half years ago. See, it's a blur. Like, honestly, it's all a blur to me. He started peeing and drinking a lot and like regressing on his potty training. And I'm like, What the hell does he have type one diabetes as a nurse, that's the first thing that came to my mind. I couldn't keep water in his mouth. I couldn't keep a dry trainer on him, you know, or he was just paying like crazy. And I'm like, I'm going to take him into the doctor. I'm like, Can you guys just check his blood sugar. And they did. And it was normal. So they did a year analysis. And he had really, there was no glucose, but he had really, really high protein in his urine. And the pediatricians like, this isn't normal at all. So I'm going to refer you down to nephrology down at primary children's, and go down there and see what they have to say. And she's like, it's probably nothing, you know. So we go down there, we talked to them, we get this out of a doctor probably shouldn't say that. I probably shouldn't say that. We have a great doctor now. So let me just preface it or follow with that. And he, you know, he kind of goes and says this and this and this could be wrong, this and this. I think we need to do a kidney biopsy. And you know, that was after a couple appointments and bloodwork and whatever. And so we ended up doing this kidney biopsy, I found out that he has this really rare genetic kidney disorder called dent disease. Very rare, and it's also rare because it's not, you don't really have symptoms of it. I think honestly, the only reason why I picked it up is because I'm a nurse, most kids would be like a our most parents I think would just let it they would just let it fly, which is what a lot do. So anyway, come to find out I'm the carrier of it. I got it from my father who had is in chronic kidney disease. And then we I've been able to trace it all the way back. So it's a x linked recessive kidney disorder, which means that it only if Boys. And I, of course, had an older son. And so it affects women as carriers, but it only affects the boys with the disease. So I had a 5050 chance of giving it to fosse as well. And so I'm like, Okay, well, we got to get the genetic tests for FOSS. And so we did, got his blood drawn, sent it off, and we were waiting on the results, and they were taking forever. And in the meantime, fosse started peeing and drinking a ton. Right? And I'm going will show he has done disease, guaranteed. I know it. And it kept getting worse. He started sleepwalking at night, he would lose weight. He had bags under his eyes. I would clean up pee around the toilet, because I have two boys. They're disgusting, right? Lovely, disgusting, but disgusting. I would clean up here on the toilet, and it would be like syrup. And it never occurred to me once that it could be type one, not once because I was skewed towards the stem disease. Yeah. Even though Luke's p was never sticky, right? But still. Then finally I'm like, Oh my god, can I just get the results? So I can treat this boy, you know, there's really not a treatment, but still. And I got the results and they were negative. And I'm like, there's no way. There's no way. I don't believe it. And like a week later, I took him to his karate class. Well, no, a couple days before that. He was up at my mom's house who lives way up in the mountains, like you have to snowmobile up to her house in the winter. She was at he was up there. And he started like having this massive abdominal pain and he was vomiting. And he was just like, Grandma, I can't drink enough. But he was vomiting and sick. And my mom called me She's like, you need to come pick him up. And I'm like, Oh, my God, like, is he passing a kidney stone because that is a symptom with dent disease is a form calcium in their kidneys. And like he had I know he has dead disease, and he's probably passing kidney stone. So I go up there, I grab him, bring him home, give them a bunch of water, put them on the couch, and he starts to feel better. Like he just passed a kidney stone, like in my mind, knew it. Next day, take him to karate. He's at karate. And he's like, mom comes up to me crying and he just looks like seriously. Like, Mom, I do not feel good. And I'm like, hey, let's go. And I just had this feeling in me. I called the pediatrician. It was like five o'clock. They're like, we're closing. I'm like, I'm bringing him in right now. And drive over there. And I'm like, Can you just test his urine? I know you're gonna find protein in it. I know it. Still thinking, Scott.
Unknown Speaker 27:41
It was done. Yeah.
Utah Jen 27:43
And so they tested urine in it comes back and she pulls me out of the room. She's like, Jen, can I talk to you? pulls me out of the room, takes me into the room next to the where the kids were. And she looks at me. She gave me this look. And she put her hands on my shoulders. And I said, I just kind of put my head back. And I'm like, Well, I guess it's a 5050 chance, right? And still thinking it was that disease. And she looked at me and she said, sweetie, she's like, it's type one diabetes. And I just looked at her. And I remember, like, almost blacking out like, no, like, it makes me emotional thinking about it now Sure. Because I remember it so well going. There's no way that this can be happening right now. There's no way and I literally dropped to the floor. And she consoled me for a minute. And I pulled myself together. I said, Okay, what do we have to do? And she's like, you need to get your kids together. They tested his blood sugar, it was 800. And you need to go to the hospital. And so I tried to call my husband he was like on the way to the dump or something to like, dump a bunch of crap or whatever. And it kept cutting out. And I'm like Scotty fosse has type one diabetes, and he's like,
what you're cutting out I'm
Unknown Speaker 29:09
throwing away a refrigerator. Leave me alone.
Utah Jen 29:11
Yeah, I'm like, and I called him back and it kept cutting out and cutting out and cutting out and I'm like, oh my god. Finally like I got I told him and he's like, Oh my god, like it rocked us. Right and so we met at the house and went down to the doctors or the hospital and the rest is that but I just the way that it presented and skewed me was insane. And that's part of the reason why I wanted to come on and talk about that also is because I listened to that podcast that you had with the woman who had lost her son and that was a tear jerker. And I said to myself, I'm like, you know, I think that people need to hear That, because it's hard. And it's so like it. Diabetes alone is so hard with your kid. And you add other things, and it just is so much, you know, I have to, my little boy has to drink 90 to 100 ounces of water a day, and he's six. And that that alone right there, dictates his kidney function. So if he gets dehydrated, it could put him into kidney failure. And so keeping him hydrated and keeping my other boy alive with insulin, and you know, it, it's everything. And I want, I really wanted people to know that it's okay to feel overwhelmed. And then I listened to your other podcasts with the couple that you had on there who spoke about how it's really not talked about how couples feel. And those two episodes to me just stuck with me so much. And that's where I'm like, you know, I really want people to know about this just just because it's just, it's unexpected, and life throws things at you so hard. You know?
Scott Benner 31:13
No, I was thinking, as we're busy researching what might be a third autoimmune thing for Arden. And we're trying to figure out why she has incredible tension in her shoulders, and her joints, sometimes her neck and can be your ankle on her knees, and you're trying to figure out what all that is. And for a long time, we thought maybe it was just their thyroid medication was off. She had low iron. We thought maybe it was that. And we're, you know, it takes a while to find a physician that can even be helpful, who doesn't just read, you know, lab results and tell you know, that's fine. This is okay, sorry. You're right.
Utah Jen 31:50
Yeah, yeah.
Scott Benner 31:53
And we're picking our way through it. And I don't know what's gonna come of it, if it's gonna just, you know, I have no idea. And it very well could end up that she'll have a third autoimmune thing. And it may end up that she doesn't, maybe we figure out something with diet, or I have no idea, right? Like, I just don't know where we're at yet. And it made me wonder if I was going to tell my kids that you have to really consider this before you have children because of the impact it has on your life. Yeah, it's really substantial. It changes it changes the course of almost said possibility. And I mean, you can fight through it and still do things. But it's just always there. It's, it's like, it's like, I don't know, it's like some sort of like torture, just a buzzing in your ear, or a light that no one will shut off. You know, just it just, it just doesn't leave you alone, ever, ever. Yeah. And you and it's as much of an impact as it has on you. And as hard as it is on relationships. It's even, it's harder to look at your kids and think something else is gonna go wrong. Like is like, like, forget, is this gonna go bad? Like is something else gonna happen? Like, I think all the time like Arden was to when she got diabetes, and she was, I don't know, maybe 13 when we figured out the hypo thyroid thing, you know, life seems like it's piling up on her quicker than it does on some people. And, you know, is that going to be like, what is that going to mean for her? You know, and I don't know, it's just, it's hard. And I'm, I wish, I don't know what I would have done differently. But I do wonder if somebody could have come to me in my 20s with all certainty and said, Look, you met a girl, you love her, you're married the two of you, we're going to make a baby together that has type one diabetes, and this other issue and maybe a third. If I wouldn't have just said like, maybe we should just make some money and travel and, you know, yeah, just not what someone else
Utah Jen 33:51
through this. It's crazy to think about that, isn't it?
Scott Benner 33:54
Yeah, no, it's terrible. And I'm not wishing my kids away. I'm just saying it's, if you really think about it, it's, it's there. And it's a lot to think about. Today's show is sponsored by Omni pod and Dexcom. And I'd like to tell you a little bit about both of them right now. The Dexcom g six continuous glucose monitor is absolutely the greatest tool that I have ever seen, for making decisions about insulin, and food and diabetes in general. Why is that? Well, because with the dexcom g six, you can see the speed and direction that blood sugar is moving, not just the blood sugar, which is helpful like to know hey, my blood sugar is 95. It's 130. It's 310 whatever it is, but what if it was 130 and moving up, and not just moving up, but moving up at one or two points per minute, or three points per minute. If you knew that just with these little directional arrows that give you that information at a glance. In case that's not enough the person wearing the dexcom can share their information with up to 10 followers. So your child could be at school while you're listening, you know, at home to a podcast and all of a sudden your phone just might go beep beep. And you think, Oh, I know what those two beeps mean. My child's blood sugar has moved above the threshold that I set for it to alarm yet, so maybe you want to be alarmed at 140 I like being alarmed at 120 that's when I like to know my daughter's blood sugar's moving up. I want to know when you're going down. You can set an alarm for that as well. Huh? This is making sense to you. dex calm down.com forward slash juicebox. Get in there, find out more. Do the reading. Figure out if it's something you want. And if it is get going. I'm going to tell you right now you will not look back. This will be one of the best decisions that you've ever made. Another terrific decision that we made here was getting Arden the Omni pod tubeless insulin pump. This is something we did many years ago when Arden was four years old. And as you know she just turned 16 Arden has been wearing the Omni pod for 12 years, every day. And it never fails to do exactly what we hope and what we need. There's the little things right? Temp Basal increases and decreases. Extended boluses pumps do that. But the Omni pod does it without tubing, you are not attached to anything when you were and on the pod, no controller, no tubing, no muss, no fuss, this little device, you put it on, you wear it, you can hide it or wear it out loud and proud. Doesn't matter. This thing is terrific. You should be able to experience it for yourself before you decide to make the plunge to take the plunge. You can my omnipod.com Ford slash juice box go there fill out the tiniest bit of information on the pod would be thrilled and they will expediently that is not a word but quickly is what I meant. send you an omni pod demo to try on. They call it a pod experience kit. It's very exciting. It comes in the mail, you pick a spot where you want to put it you put it on. And then you go about your life. Your work, you play your baby asleep, you see what it's like to wear it on the pod. And if you decide this is for you, on the pod is the way I want to go. You move forward with the process. And if you don't, on the pod does not bug you about it. I don't like they're not like knocking on the door like, Hey, we sent you a demo pod. What do you want to get me going tomorrow? They don't do that. They just go you didn't like it? Whatever. Cool. That's why it's worth trying. Miami pod.com forward slash juicebox. No Obligation means give it a whirl, see what you think. I mean, the demos free, you have nothing to lose. There are links in your show notes to all the advertisers. And at Juicebox podcast.com. If you can't remember, the ones I've just given to you.
It's a lot to think about.
Utah Jen 38:05
It is it's a lot and especially I've and this also will kind of play into where I've been the last few years is with my mindset and like everything was kind of it's been this, this full on blur? Because I am the carrier of it. Right? So I'm the one that gave it to him. And I also have hypothyroidism so I have an autoimmune disease. So here I am thinking the doctors like Well, you could have it could be your problem for the type one blow, you know, and it's like, oh, gee, great
Scott Benner 38:38
thing to have to say. Like, why does it matter where it came from? It came right came from randomness is where it came from?
Utah Jen 38:44
Yeah. And so, so yeah, you sit there and you beat yourself up about it? Well, if it if it wasn't for my genetics, I wouldn't have given that to my boys, you know, or boy, whatever, you know, and it really messes with your mind, especially when you're trying to figure it all out and still live a normal life and keep them normal and, and grow and help them to be raised. Feeling their normal. And that's a big deal for me, is I'm not letting type one affect my little boy to the point. I'm trying to not let it affect him to where he feels that he can't have something or, you know, he can't go to a birthday party or whatever, you know, it's like, and you still get those comments from people at school or you know, neighbors or whoever, whatever that say, Well, he can't have this cupcake. Or he can't have this and it's like no, he really can. He can eat the entire cake. As long as I figure out what to dose him with. And it's okay. And I'm not afraid of it anymore. Like literally I could set a birthday cake in front of him and dose him and and Scott By the way, with the honey materials. I haven't died. He ate a big old thing of Froot Loops the other day. dialed it, it didn't go above 120 Wow, beauty,
Scott Benner 40:06
I feel pressure for that. Made you understand how to use insulin, that's really cool. Yeah, and you can use it with anything, it's because
Utah Jen 40:14
my mind is more clear. And everything has become so much more calm and clear in my life. And it's, it's helping my kids to you know. And so that accident that I had in March was actually a really good thing. The concussion that I had, and all that stuff was a good thing, because it took me out of my fight or flight mode that I was living in for so long. And made me realize, hey, you can't you literally can't live like this anymore. It's gonna kill you if you do. Nothing. So it helps to hear you say this to me. Because it really does, because it helps to justify what I was feeling those two years. I'm saying
Scott Benner 40:57
no, I'm really glad I like I said, you said it earlier. Just you were a reasonable person, and you're intelligent, you understood, and then we get back together. And it was almost like you were calling to say like, Can you explain this to me again? And? And I was like, Huh, this doesn't make any sense. And now with contacts that I made, I guess it makes perfect sense, honestly.
Utah Jen 41:20
Yeah. And and I'm I get it now. And I do want to say that I'm changing, changing paths in my nursing. And I'm going to get my CDE. And I'm going to be working for a small nonprofit clinic here in town to help people with diabetes, all sorts, and working with this amazing internal medicine doctor to build this beautiful diabetes program. And so I'm like, jumping in full bore with my clear mind, and a whole new outlook on it. And I'm so excited.
Scott Benner 41:55
That's lovely. It really is. We all have to find a way to help each other because, I mean, listen, I feel like I can hold myself together. As long as the things that happen to my children are manageable. Like I don't expect the perfect life. I don't get mad at people who have lives where they don't run into medical issues, right? Yeah, that's not my thing. I just realized that somewhere beyond manageable. If something happened, that was your reparable just life changing, you know, couldn't leave a room couldn't do a thing. couldn't function that I don't I honestly don't know if I wouldn't be exactly in the shoes you were describing. If I wouldn't just zone out and think Yeah, alright, let's just just keep everybody alive until you know, until this is over.
Utah Jen 42:46
It would be pretty hard when I got the call from the doctor telling me that they thought it was dengue disease. I remember I was in my kitchen and my husband wasn't home yet. The kids were out back playing. And he goes, this is what I think it is. And I'm like, Okay, well, what the hell is that? And he's like, well, it's, you know, it's all dependent on it can it can cause kidney failure between anywhere between the third to fifth decade of life? And like, What do you mean? And he goes, Well, he could possibly need a kidney transplant. And I just sat there. And I'm looking at my three year old playing in the backyard on the swings, and I'm like, like, you could imagine.
Unknown Speaker 43:28
No, I can, yeah, I and
Utah Jen 43:31
my husband came home, I told him in the kitchen, and he, he just started crying. And when you see a grown man just full on start bawling because of his little boy, it's it's traumatic, and it was rough. And so I, I do I want I want people to I want I want it to be heard that. That is definite PTSD. Like it's it changes your whole entire life. The whole thing. And, and then to have, you know, let's see so far. He was Yeah, so less than a year later, Foster was diagnosed with type one.
Scott Benner 44:11
Yeah, while you're still fresh in this other thing. I'm looking here just for context for people dense disease is a rare genetic kidney disorder characterized by spillage of small proteins in the urine, increased levels of calcium in the urine, kidney calcifications. recurrent episodes of kidney stones and chronic kidney disease dense disease affects males almost exclusively. That's your that that's a good clear understanding of it.
Utah Jen 44:36
Mm hmm. Okay, Yep. Yep. And it can be so various, you know, from person to person in a family. Somebody can have like my little sister, who is my dad's daughter. My parents are divorced, but she is my dad's daughter. She is a carrier of dense disease too. And so and then what do you know she has two little boys and her oldest who's three was diagnosed with Then studies as well, and then her youngest one and a half has not been tested yet. So, but difference, you know, like Luke's kidney function is down. I mean, he's in stage two chronic kidney disease. Her little boy has fine kidney function. And so it all totally depends. You don't know how it's going to affect you, my dad 60. And he has, I think, what 18% kidney function right now, he needs he needs to be on the transplant list. I think he's going to be there soon. But he's 60. You know, and he never knew he had this until two years ago.
Scott Benner 45:36
Right? And so is your son. Like, is this progression quicker?
Utah Jen 45:42
Um, I don't, I don't know, the doctor that we first saw, he put him on some pretty strong medications in the beginning, I think which put him into like an acute kidney injury, and kind of took down his function. For a while we took him off those meds I went, I flew out to the Mayo Clinic to see a real specialists on this, because there's very few, I think that they're probably the only ones. And he says, Now these are way too strong for him. He's too little. And they took him off of them. And his function came back a little bit. And they can't they won't tell me you know that if that is what kind of took it down. But they said that, and he's been staying nice and level for the last year. And so I'll take that, you know, we we pump him full of water all the time. And he's a great trooper with it.
Scott Benner 46:32
Um, how frequently does he have to give blood for testing to track function?
Utah Jen 46:38
every three months?
Scott Benner 46:40
Yeah, Arden's been given a lot of blood lately to try to figure out her other issue. And, you know, it starts off. It just it feels like a drudgery and then all of a sudden, I don't know what's worse, it stops being a drudgery and you get accustomed to it. I'm not sure if it's worse to struggle, or if it's worse, to just be okay with it. I don't know if that makes sense or not. But
Utah Jen 47:02
oh, it totally does. And then add the fact that I'm a nurse. And so I can pull up his records. Right, right, right when they come up. And I look at the numbers, and I know them. So because I look at them all the time for my job. And so being able to look at the numbers and go, Oh crap, why is this? Higher? And this lower? What can I do? You know, and it's that, that nursing brain takes over? And everybody's like, Oh, it's a good thing. You're a nurse, you're in good thing. You have these kids? And really, it's like, man,
I almost wish I didn't know. Yeah,
Scott Benner 47:36
and I gotta say, it's a weird statement to say that because you decided to go into nursing. It's good that you got a child with dense and type one diabetes.
Unknown Speaker 47:43
Right?
Scott Benner 47:44
odd sentiment today for somebody? Like Thank you. Thank God, your mechanic your car breaks all the time,
Utah Jen 47:50
right? Yeah. Do you think you could
Scott Benner 47:52
if we were wishing for things? Couldn't we just wish for them not to have dents in type one diabetes, instead of this? This is an odd wish to have. Yeah, I get people intent. But it's odd.
Utah Jen 48:02
Yeah. Like if my little boy was to go and have kids, the one would dent he would if he had boys. It would be gone. And it wouldn't be passed down the family. But if he had girls, they would be they would have a 5050 chance of becoming a carrier. Or no, they would be 100%. carrier. So it all depends on what Luke has for kids. Yeah. And but I have to say, I have to follow it with this being the determined mom that I am and the one that's not going to let just anything just be like, okay, here it is. When I was told that he had it, I sat there and I'm like, okay, medicine has come so far. And I know that we're not to where I'm just going to be like, okay, he has this rare disease. That's it. I searched and searched and searched and I found a top notch medical center back east. And I've met with them. And we are funding a research project with them to to try to find a way to genetically modify the chromosomes of the of the kidney, or the DNA where that disease is, and so there's a specific spot on the DNA where it's affected. And there's this thing called CRISPR. And it's a genetic editing tool. Like Think of it as little. Yeah, it's pretty amazing. So we have a different we have two different ways that they're that they're researching it, but CRISPR is one of them. And we've funded it and we're in the we're beginning the third year of it, they've created a colony of mice that have done disease, and they are now going in and testing the DNA to see if they can extract that defective part and replace it with a non defective part in reverse the disease
Scott Benner 49:58
genetic engineering That's very cool.
Utah Jen 50:01
It's pretty amazing. So I have to say that, you know, by the time it's, it's a problem for him, hopefully later in life, we're going to have a cure for it. And I'm pretty proud to say that, you know, I have been moving along. Yeah. Yeah, that's very cool.
Scott Benner 50:19
I don't, I can't imagine how just comforting that feels to be able to do something towards a possibility.
Utah Jen 50:27
Hundred percent. Yeah. There. I just wasn't okay with just letting sitting there and letting it go. Because there's no research on it. Because it's so rare. Type One, diabetes has a ton of research, obviously, right? But this, there's none, because the NIH doesn't want it. They don't want to have anything to do with it. Because it's so rare. So the only way that these rare diseases ever get figured out is by families. And luckily, my father in law in my mother in law, were kind enough to help us with this and to put the money into the research it and I pray to God that every day that it that it works out, and I have these amazing doctors that are world renowned working on it with us, and I just feel so I just that's that's my hope, you know, so it gives me that whenever I get scared and nervous. I just think of that and go Okay, you know, I have I have an amazing team working on this everyday for us right now. Literally for my boy,
Unknown Speaker 51:25
that's excellent.
Utah Jen 51:26
Good for you. So, yeah, it's pretty cool. It really
Scott Benner 51:29
is. I mean, when you stop and think about this, these little ideas, like I mean, right now, like I'm saying, Arden's got no. constant tension, like muscle tension, right. And it stopped her from playing softball. It's, you know, she tried to she was trying to paint her room last night, and she couldn't hold her hands up over her head. She's like, my hands are getting numb. You know, like, so? severe it. Yeah. And it can definitely be and you're trying to figure out everything and and, and you stop and think about what it really is. There's just something like autoimmune, right? If it is, and that something in your body is just telling something. I don't know the details of it, right? But something's telling something, hey, make this stronger, instead of weaker, make this weaker, instead of stronger, you know, inflame here instead of there, or, you know, it's just the oddest thing. It's just, it's a, if it was a computer, you would just, you know, we just tell it, no, stop doing that. And that would be the end of it. And that is really what you're talking about with crispers is going into a gene and saying, hey, look, this thing here, we're gonna remove this and put something in that, that that works better.
Utah Jen 52:38
And then your body will just proliferate it and just, you know, be like, Okay, I see that this is the way that it is now. Yeah. It's pretty amazing.
Scott Benner 52:46
Very cool.
Utah Jen 52:47
Yeah. Yeah, I feel pretty, pretty fortunate that we have it going. I feel that I'm actually trying to do something about it.
Scott Benner 52:53
No, no, I agree with you. I really do. And it's beginning to go back a little bit. There are times when Arden like jokes about, I'm gonna just say like, I'm not gonna have kids I'm gonna adopt. And I do wonder sometimes if she doesn't really mean that if she doesn't mean, like, I don't want to give somebody else diabetes, like like, I don't know, if I've never really asked her she's too young. I think dig into it too much. Because if she's not thinking that I don't want her to
Utah Jen 53:20
write, or Oh, yeah, put it in her brain, right? What are the chances Do you know?
Scott Benner 53:25
I mean, in the end, they're not that much greater. I think the numbers like 10%, or something like that. But I think I don't even think that's how she's thinking about it. I think she's thinking about it of like, okay, so say I have a kid that doesn't have type one diabetes, and he has a kid that doesn't have type one diabetes, but three generations later, someone does again, and could I have put a stop to that? Like, like, I think that's what she's thinking about? Like, could I be the one who doesn't let it happen here? And I don't know if that's really well thought out as she's a pretty young person. Or if she even or if I'm misunderstanding or, but I don't know if she did it. I don't I think I would think of it as a kind of selfless, you know, yeah. And so I don't know, I really have no idea what's going to end up happening. But I can tell you that I've spoken to people who just very recently, a woman who told me like I am I'm not having kids because my life experience. I'm not gonna I'm not gonna put it on somebody else. You know, so I was like, okay,
Utah Jen 54:30
geez, that's amazing. You know, I, I look at it as
it's a hurdle, and it sucks ass. Bad. But I also am trying to teach them that everybody in this world has something either. If we don't have it right now, we're going to have it and it could be bad. It could be a nuisance, and it could just be like, you know, whatever. But somebody is always going to have something and um, And I've really been trying to teach them to, to not just look at the, at the person, but you know, deep down, you know, the kid next to you in class could have could have a G tube and have to have tube feedings. And you don't know about it, you know, the kid next to you could have had a open heart surgery or a heart transplant. You know, I mean, there's so many things that kids have and deal with every day. And type ones manageable. And I've learned that from the past. Yeah, however many years, it's manageable, it's sucks. It's a disease. But you know what? I think the more that you give them, the power and the confidence in it. And you know what, and just to let them my little boy has a therapist that they talk to every week. And just letting them voice their anxiety and their frustrations in their their worries. helps a lot. Because it's true. I mean, it's scary. And it's it all of a sudden takes over your whole world. And it brings out anxiety in kids a lot. And I agree, I sit there. And I'm like, What the heck is going to happen? And when they turn teenagers that that worries me?
Scott Benner 56:16
Yeah, yeah, I think that's that other person's point, too. Is that not? Maybe it isn't even so much? Like, I don't want to put somebody else through this, but I don't know if I have it in me to basically do it again. You know, like and watch it, you know, is hard enough doing it? Now I'm gonna watch somebody do it. I just think that some people, they don't want that they can't handle it. And you know, I think good for them to for realizing what they can and can't handle to
Utah Jen 56:42
Oh, yeah, you know, it 100%
Scott Benner 56:46
it's a it's a lot. Well, Jen, Listen, I'll tell you what I figured out here in the first bit of this conversation is that of the people from Utah who come on the show, of which if you listen, you know, there are many, you're clearly not Mormon, because you've cursed about a million times since we've been.
Utah Jen 57:01
And I've actually toned it down a little bit.
Scott Benner 57:04
Yeah, I know that. from talking to you privately. This easily could have devolved into just me saying and you saying other things like that? Oh, totally the whole time. easily could have gone that way. But yeah, wow. Uh, geez.
Utah Jen 57:21
Born and raised in Utah. And never, I was never, never LDS and I attended a high school that I was the only non Mormon High School in, or no, a non Mormon person
Unknown Speaker 57:31
in that school. Mm hmm. That's interesting. Pretty interesting. Yeah. So
Scott Benner 57:39
I wonder if you wouldn't tell me a little bit about you. You talked about your husband's reaction to the dense diagnosis. How did it How did it hit him? The type one a year later? Was it just were we just numb by them were just like, was waiting for something like this? Or, you know, how do you feel then,
Utah Jen 57:58
um, I it hit him hard to it was on May 9, when we were diagnosed, and his birthday was on the 11th. And so we were still in the hospital for that. And I remember driving to the hospital. And I was just in this daze. And he was sitting next to me. And I took his hand and I said, You know what, we have to be so strong right now. And I already knew that we were struggling from the previous diagnosis. Because we were both mentally trying to figure it out, and to come to terms with it. And I said, this is not something that we can't have amazing communication with, like,
this is gonna bring us to a whole other level. And
he just sat there, just looking ahead, and he's like, okay, okay. You know, I mean, he, he was just, you could tell he was just shocked. just scared. And he didn't know what to think. I don't think he knew like the he didn't know the extent of what it was going to be. And then they had, and then he dropped us off at the hospital. And then we stayed the night, and I stayed with him. And he went home with my little boy. And, of course, just sat and thought about it, and was like, and researched it, and then it kind of hit him. And he's like, Oh, my God, like this is non reversible. This is never gonna go away. And it's 24. Seven, all the time. You don't get a break from it. And it hit him hard.
Scott Benner 59:35
Yeah, well, you got that. All right. Well, listen, I mean, you can try to be upbeat about it and say that this is the these are the cards you have and you need to play them, you know, whatever metaphor makes you comfortable. And I believe that and I definitely operate that way. It doesn't stop me from wondering if there isn't a barrier that if we push past I my brain just When God bless, you know, that would be enough for may be too much. But, you know, until then I just you just keep doing the things you need to do the things you're supposed to do and the things that work and have the the foresight to look and see the things that aren't working. You know, look at you, you may have really saved your son by, by balking at that that medication, you know, you never know the doctor could have put him on something that would have just burned his kidneys out in, in a year. And you wouldn't, and you would have had to look back and think I gave him that pill every day. Like I did. Like I literally facilitated that somebody else told me to do it, but I handed it to him. And totally Yeah, I think about that a lot with you know, even just thyroid medication, you know, when you're trying to mess around with levels define where it is. And, you know, doctors are like, well, I'll try a little more, try a little less, and they get hyper and then they get you know, you they bring it back a little bit and you're just like, wow, that just happened. Now look at her struggling and I every day said to her, like take this, take this, take this. And I'm doing it on the advice of someone else. But
Unknown Speaker 1:01:09
yeah, but it just it's that
Utah Jen 1:01:11
gut feeling of a parent, and you have it too. I was gonna say the mother's intuition. But those dads, you know, that are with their kids all the time you got you have those gut feelings. And you know, when something's not right,
Scott Benner 1:01:24
yeah, yeah. And then and then I find myself thinking about every day that I don't figure something out for her. I feel like I wasted a day of her life. Yeah, and, you know, it's probably why I figured this all out for insulin and, and put this all together. And then I felt so burdened by it. I thought, Well, how do I not tell someone else? Like, other people feel like this? You know, so I'll put it out to the world and let other people take from it if they will, hopefully, people will find me quirky and hang on to the podcast and learn something like you did. But but just all the other things? I don't know. I just wonder, like yesterday, if Arden didn't feel well, like what would she have done if she felt better? And, you know, and how many other days are going to get pissed away until I can figure out what to do for or come up with the idea that there's nothing to do for at least be able to feel like you exhausted every option. And sadly, you just don't have an option. But But at least I won't wonder, you know, to me, like finding out like you can't impact it would be better than spending every day thinking there was a way to impact it, and you weren't figuring out what it was. I don't know exactly that makes sense or not. But
Utah Jen 1:02:50
100%. I mean, that's exactly where I'm at right here with this research that we're doing. I either could have just sat back and said, Alright, here we go. There's nothing, there's no treatments, you just kind of wait, you have no option. Because there's nobody that knows anything about it. Or you frickin try to figure it out. And if it turns out that nothing can be done, you know what, at least I tried, and at least I put a really, really, really good, valiant effort into it. Right? And it's the same with you, Scott. But I also think that you can sit there and I've learned this over the last three years of chaos, that you can sit there and beat yourself up every day, even though you're not really beating yourself up. But you can think those thoughts and say, What if and why and this and that. And trust me I do every single day. But I also listened to your podcast and I think good lord, this girl is getting so many amazing tools for her life that she is going to be so well taken care of. And no matter what it throws at her. Look what you've done.
Scott Benner 1:04:10
Well, that's very nice. I thank you. I I tried to believe that whether Arden is even aware of what the podcast does or not, that like her life led to other people doing better. Like I I take some solace in the fact that your son is healthier today. Because my daughter has diabetes and
Utah Jen 1:04:33
absolutely and I look at what you post and her graphs and they're beautiful, and how your high is what 120
Scott Benner 1:04:42
we try to react at 120 and you know and stop spikes I consider a pretty major spike 180 that's definitely how my mindset is around it.
Utah Jen 1:04:54
Okay, and see and you've won off on me like that, too. When I see him starting to climb. Done. I deal with it. And it's because of her. And it's because of hearing how her agencies are and that she's basically she's living in a non diabetic agency range. Yeah. And so think of what you're doing for her life in the diabetes realm. Right? So you're taking all of those complications that she could be getting from this later. And you're just you're taking them away, because of what you're doing for her and teaching her. That's huge. Scott,
Scott Benner 1:05:27
I hope so.
Utah Jen 1:05:29
Yeah, it's huge. And so the things that she's, she's a strong, strong girl, and so for her, to be able to overcome whatever's coming up and gonna be, I hope that we're you guys are able to find answers for it. She's going to be okay. And she's going to take it and she's going to be like, you know, what, this probably doesn't compare to what type one is. That's my goal,
Unknown Speaker 1:05:51
like, you know,
Scott Benner 1:05:54
and I do but by the way, a lot of what you said I firmly believe in she is mentally tough, and not in a way where She's ignoring knowing what's happening to her. And she is, she's got a great I don't know, just a vibe about her. That's, that's very positive. Even like, you know, right now, while we're, you know, going through all this, you know, and trying to figure out something new and she's struggling, she still has a very good sense of humor about it. She says funny things like, Hey, tell me the truth? Did you just make me for spare parts for coal, and then just didn't need the parts? And now I'm just rotting away? Like, she's like, what's happened to me? Exactly. And I'm like, No, you know, or so, you know, she's just, I don't know, she just, I know, she's frustrated. And she obviously should be. But it the frustration doesn't get internalized, it doesn't turn into you know, she's not drinking and getting high. And like, you know, like, you know, doing, she's just, she's doing the things she needs to do and, and being patient. And I think a little hopeful. And, you know, I told her last night, I said, Look, I know we're not getting through this very quickly. But I want you to know, like I'm every day mom and I are trying to figure it out. Like we're not, you know, we're not slowing down, we're not stopping it is tough, because you kind of want to just throw all your responsibilities away and just dive into this thing until you can figure it out. But sometimes I think you have to do it, you have to make your way through it, you have to meet a doctor who looks at something and then says, Ah, you know what, he had to go talk to this person instead. And you know, like, there's a process there, like everybody in the world doesn't have all the answers. And there are plenty of people who are, you know, endocrinologist that don't understand diabetes, just like there are plenty of people who are other kinds of doctors who don't really completely understand enough to help a person all the time, you know, what, so you gotta, you got to keep swinging until and make connections until you meet people who, you know, like, are the right people, it's a very random thing. And it's not fair. But
Utah Jen 1:08:02
it is. And another thing I have to say about it, and that I've learned is don't feel that you have to take the medical care that's around you. So like the, like you said, making connections and finding people that are having similar situations and whatever. And then looking outside of that. And like I said, I I have doctors at Rochester in Mayo, Mayo in Rochester, Minnesota, I have doctors in North Carolina, and, you know, these specialists that help provide things that aren't anywhere near Salt Lake that the doctors that I go to don't even know about these doctors. Yeah. And so it's it's finding the people that it's finding them
Scott Benner 1:08:43
and bear out there and being hopeful that it exists to it. And by the way, some people don't even have the, you know, they don't have the money or the or the connections to do things like that. And I think that one thing that I find to be important is that when you eventually end up online looking for answers or support, you have to remember that there are always going to be people who have for probably sometimes very good reasons given up. And they're just in a management scenario. And that might not be the right word Exactly. But just like I'm just gonna get by, like, tell me what I have to do to get by with this. And when you see a lot of those people collected in one place, you have to be careful that you don't expect that that's just, you don't start thinking that's the expectation, this is what's going to happen. Like, I'm going to end up here too, because there are plenty of people who won't end up there if they keep looking for other avenues. And I think that's important not to get sucked into other people's misery. And totally that isn't, that isn't to minimize their misery. But if their pathway didn't lead them to a doctor in North Carolina, when they lived in Utah, or that pathway didn't lead them to a podcast that taught them how to Pre-Bolus or whatever it is, you could end up thinking that there were Reality is the ultimate, you know, this is what's going to happen. And that's, that can very often not be the case, it's just very easy to get sucked into other people's misfortune. And a lot of times support can turn into. There's a word I'm looking for that I can't think of It's, um, I guess misery loves company. There should be a word around that somewhere. But at some point, when you feel like you've reached the end, and there's no answer, and you meet somebody else who does too, that then becomes your bit of hope. But if you're not to that part yet, it could suck you in like a black hole before you have all your chances to try. So I just I'm trying to say to people, like don't give up. And there are a lot of answers for a ton of the things that you're going through.
Utah Jen 1:10:44
Not everybody, follow your gut feelings, follow those instincts. Like if you think something's wrong, follow it. Yeah. And because, you know, you know, best
Scott Benner 1:10:53
and, and hopelessness can be depression, too. Yeah. If you really start feeling hopeless. It's not because there's no hope a lot of times, I mean, listen, don't get me wrong. Some people have no hope. I'm not saying that. But you know, for a lot of people, hopelessness is just is sadness. And it just doesn't mean there's no hope. That's all
Utah Jen 1:11:13
right. There's an even for the people that don't have hope. I think that they they do they just need to find where it is it there's something there? Well,
Scott Benner 1:11:22
yeah, in a very minimal way talking about diabetes. That's part of the reason why I think sharing your success is nice, because a person who feels hopeless can see a, you know, a more stable graph, and think that's not possible. And they can be mad, or they could see it and think, Hmm, maybe there's something I don't know that that person knows. I want to find out what that is, you know, like me, I think other people's success should feel hopeful. Not accusatory, not like, Oh, look, you're not good at it. I am. That's that shouldn't be the case. I think you should let them think, oh, that guy's got to know something. I don't know. I want to find out what it is, you know,
Utah Jen 1:12:02
yeah. And it kept it kept driving me because I kept hearing people that you had on the podcast that would listen to you for a couple months, and then be like, I got it, you know, like, beauty. And I'm like, What the hell? Why can I not get this? And?
Scott Benner 1:12:17
Well, it turns out, your brains were scrambled.
Utah Jen 1:12:19
It was it was too much like my brain It was my brain was just not it was not functioning it was in it was in survival mode. And now that it's not, and I mean, it's it's awesome. Like Farrell, there's days, I love those days like that you talk about the days that you don't even really mention the word. And, and Arden doesn't really think about it, you know, granted, does she think about it, when you have those days, I don't know.
Scott Benner 1:12:48
We're at least not talking about it. It's not a subject of conversation. It's not eating up minutes and seconds and hours of days. So I mean, I'm sure it's in the back of your head, like I said, like that this, you know, a buzzing sound or a light that won't turn off when you want to go to sleep, but it's not overwhelming. And it's not the first thing at the front of your head. And I think
Unknown Speaker 1:13:06
she going back to school.
Scott Benner 1:13:08
No, no, she's gonna do it from home again for another semester.
Utah Jen 1:13:11
Yeah, am I? Well, just because she likes it.
Or is it because I've had the option? Uh huh. And
Scott Benner 1:13:20
I think she liked it better. Yeah. So as long as the option existed, I'm think she's like, oh, I'll do this. Yeah, plus, it gives us a good chance to, you know, work through everything else that's happening, because there are times where she's, she's very tired. And just you know, and so she can at least get up and make it downstairs and do her schoolwork. She doesn't have to get up and take a shower and get dressed and do a whole thing. So buys us a little more time to kind of figure out what's up.
Utah Jen 1:13:48
Are you guys, um, do you think you're close to to maybe figuring something out? Do you feel that way? Well, we
Scott Benner 1:13:53
were it's, you know, it's a process of elimination. I think it ends up being so I you know, we're we have actually an appointment a couple of hours to talk with a doctor about her last bloodwork. And I think we're going to get her, her thyroid medication definitely settled into where it belongs. And then I'm not sure if she might offer up one more suggestion here. And then if that doesn't clear, the muscle pain and the kind of the, the soreness, then I didn't we'll move on to I mean, I'm guessing a rheumatologist next and try to pick through that. I mean, it's not you have to understand that it's not so terrible that she's not curled up in a ball, right? Like it's, it's just it's muscle tension. painful joints, sometimes not always. And then, you know, more painful sometimes than others I should say. And she'll sometimes say like, it feels like our bones are bruised. It's the way she describes it. So, you know, we'll we'll follow that path and see where that takes us. Next.
Utah Jen 1:15:05
Yeah, it's hard to see your children in pain.
Scott Benner 1:15:07
It certainly is. Yeah, definitely not something I would recommend.
Utah Jen 1:15:12
No. Yeah. But it makes it makes you as a parent stronger. And it makes you and your child's relationship stronger to in a weird. Not okay way.
Scott Benner 1:15:25
I hear what you're saying. As long as it doesn't kill me. I guess I'll be alright.
Utah Jen 1:15:30
Yeah. And as long as it as long as it doesn't take you to where you can only handle like it's true. Your brain in your body, as a human can only handle so much stress until it will just be like, can you have done? Yeah.
Scott Benner 1:15:43
That's off. So you don't make yourself completely insane.
Unknown Speaker 1:15:45
Yeah,
Unknown Speaker 1:15:46
yeah. Well, I mean, hopefully you can come back from it.
Scott Benner 1:15:50
Alright, well, I feel like this was uplifting. And at the same time, I can't be certain.
Utah Jen 1:15:55
Right? It's it's life, Scott, it's life. It's the way it hands it to you. And it's the way that you're going to take it and look at it and tackle it. I'm not going to let I'm not going to let these two things. Bring my kids down. They're going to live an amazing life and become amazing men, with amazing families and live to be grandpa's, you know, that's, that's what we're going to do. And they're going to take life and they're just going to be like, Okay, let's do it. I'm strong. I'm a badass little boy. And I'm going to become a badass man. And I'm going to conquer it.
Scott Benner 1:16:31
I always think of it this way, I think we're going to figure it out. And I genuinely believe we're going to, but if we don't, whatever that whatever it is. I guarantee you that my last breath, I'll be swinging. Like I'm not, I am not giving up until the very, like, you're gonna have to take me out of this for me to give up. Yeah, you know, so I am definitely going down swinging, that's for sure.
Utah Jen 1:16:54
Yep. Arden's got a good team on her side. And you will, you won't, you won't let things go, you're going to figure it out for her, and she's going to be better, and she's already better in the long run. And she's gonna be set up for a beautiful life. Well,
Scott Benner 1:17:09
I hope to, um, I hope to be able to report back those sorts of things. And you know, one positive thing from all this is that the endocrinologist that we found that's helping her with the thyroid stuff, even if the thyroid stuff doesn't end up being the entirety of the issue. I'm going to get her on the podcast, and she's going to talk about thyroid in a way that most people don't get to hear about this is going to be really valuable for you. And this wouldn't happen, I wouldn't have met her I wouldn't have been able to bring her on the show eventually. And you know, she asked that we have to wait, obviously until she's done treating Arden. But yeah. But after that happens, you know, we've met another person and we can spread good information to to more people. So
Utah Jen 1:17:47
yep. Because thyroid disease is a whole other ballgame that is very, very deep.
Scott Benner 1:17:51
Yeah. Yeah. It's not easy. That's for certain. All right, Jen, thank you very much for doing this. I'm so happy that you're in a better space. You know, yeah, it's been really cool to get to know you over these couple of years, then to bring it together with this episode. I've liked this so much. I'm putting this out very soon. Just saying Oh,
Utah Jen 1:18:08
thanks, Scott. And I, I have to say that the way that we treat our son in his diabetes is a lot. Not a lot, I would say 98% of what I've learned from you not Mar endocrinologists, because as you say, they, they keep them alive, right. And they don't care if they're sitting pretty at a 200. And so I have to give everything that we're doing to your advice. And I take that to Honest to God, the deepest parts of my heart for thank yous because it's, it's pretty amazing what you're doing. I feel
Scott Benner 1:18:43
like you're trying to make me cry, john.
Utah Jen 1:18:46
It's true, though, like you, the impact that you're doing for people all across the world is a big deal. And I can't my husband and I and my family can't thank you enough. So
Scott Benner 1:18:57
it is just so much. It is very much My pleasure. I mean that it's helping people it's helping me. Yes, just so you know, you know, every day I can't fix everything in my life for for my kids. And I hear about somebody like you or people listening or having more success makes everything feel better. You know?
Utah Jen 1:19:16
Yeah. So you're making a difference. And, you know, when you die. My grandpa always said this. My grandpa always said this, when you die, you want to know that? You know, it doesn't matter what you have, it doesn't matter what you have next to you as far as material things or how much money you have in the bank. It's what you've done in order to make a difference in people's lives. No, and you will literally I look at you and I say you know you're the type of man and your family is the type of family that is able to, to carry that and to show the impact that you've made on so many people's lives.
Scott Benner 1:19:50
This is very kind of you just say thank you. I thought you were just gonna say you're gonna come to my funeral, but never mind. I just want one person to show up at the end and be like hey, cuz you know, the people I grew up with, they're gonna be like that, guys. Like, what are we talking about right now? Why are people sad? I would need like, I need you tell Jen to stand up and be like, No, listen. I just need one of you. Y'all don't have to come just one of you, please.
Utah Jen 1:20:10
Because I'll be there. How's that? Don't make it anytime soon? No, no, I'm just
Scott Benner 1:20:14
saying, you know, some of those kids I went to high school with, they know me like 30 years ago, there'll be like, wait, the guy who made the dumb jokes. That's the guy you know. And I'm like,
Utah Jen 1:20:23
they know while they're working their nine to five you're changing lives.
Scott Benner 1:20:27
Now. You got to thank this microphone and technology, by the way, cuz seriously, I would be yelling out of window if it wasn't for the internet and, and how some of this stuff has become so available for people to talk to each other. It really is amazing.
Utah Jen 1:20:41
I have recommended your podcast I don't I can't even tell you how many people Thank you. I randomly working in the hospital and working with newly diagnosed type one diabetics. I'm like, you've got to let this the first thing I write down on their discharge paperwork.
Scott Benner 1:20:55
Oh, that's so cool. I really mean, and it's nice if you that you're going to go into the community and like it made me feel like recently you said like, I'm going to go work at this place. I thought, Oh, wow. Like something I said, might come out of Jen's mouth one day and help somebody
Utah Jen 1:21:10
like that. Are you kidding me and the interview that I had, I said I don't think of diabetes as a typical person who thinks of diabetes. And I used your words. I said I you have to be bold with insulin, and you can't be afraid of it. And they don't even diagnose it. Or they don't even prescribe insulin to their patients. Because they don't have the the employees and the medical professionals to follow up on it to see how it's working for them. So it's all oral meds are like Lantus. They don't do fast acting because of that. And I said, well, we're gonna we're gonna change lives. And literally, it's because of the way that you're helping me. Give a lot about it,
Scott Benner 1:21:53
Jen, I know you're tall but you're not allowed to people in the house. That's illegal. Just
Utah Jen 1:21:58
that's my dog. bazel is a French Bulldog, right?
Scott Benner 1:22:00
He's a mix, but he's got a lot of French in him.
Utah Jen 1:22:03
Okay, I have a French and an English. So that was my English.
Scott Benner 1:22:06
Well, you know what I'm gonna let you go. But as you're talking about sharing, then telling people about the podcast, it made me pull us up to look. And a second ago, we were 370 downloads away from 2 million and I refreshed it just now. And now we're 320 downloads away from 2 million so I really appreciate when people share the show. Because if this doesn't help anybody else, I just don't have the like, that's the one thing I can't do you know, is I can't go find people.
Utah Jen 1:22:37
Well, I'm telling you this you're gonna be a it's gonna be the first thing I'm telling you on this on this paperwork I give to patients and teach them.
Scott Benner 1:22:45
Thank you. I really appreciate that. I really
Utah Jen 1:22:47
well, I appreciate you. Alright, have a great day. Okay, Scott, take care.
Scott Benner 1:22:51
Yeah. Well, for someone who doesn't live anywhere near the ocean, Jen short can curse like a sailor catchy. Thanks so much to Jen for coming on the show and telling the story of both of her sons and her life being the caregiver of children. You know, with issues that are our daily. I really thought this was terrific. I really just did. The Who else? Oh, Dexcom. Thank you Dexcom, makers of the G six continuous glucose monitor, please go to dexcom.com Ford slash juice box to find out more. And if you want to no obligation demo of the Omni pod tubeless insulin pump sent right to your home, my omnipod.com Ford slash juice box. And if you want to do the podcast a favor, go into those show notes and click on my link. Can you do that and click like like or type it in the way I set it exactly. My omnipod.com forward slash juice box. And then dexcom.com forward slash juice box let the sponsors know you came from me. And that way they'll keep being sponsors and you'll keep getting a free podcast. Don't forget the giveaway lasts the entire month of August 2020. So go to Juicebox podcast.com. At the top of the page, you can click on the link that says to millions. And when you get there, it's easy to enter. There's nothing to do to enter. As a matter of fact, you can enter once a day every day in August of 2020 What can you win a Juicebox Podcast sweatshirt, some Omni pod t shirts, Lily's chocolate gift pack, a 30 minute consultation with Jenny Smith CDE a bunch of Dexcom swag, some touched by type one goodness, and anything else I can find a throw in here. And I think I'm trying to get you a meter from contour. I'm working on that. I'm not sure if that's like a thing you're allowed to give away or not. But I'm gonna find out. That's me. I'm out there swinging for you. Okay, check it out. Thank you for helping me celebrate the 2 million downloads of the podcast which actually happened yesterday. During that doctor's appointment that I mentioned for Arden's telehealth thing that you kind of heard in the in the episode I know this is crazy that there's an episode coming out the week. It's recorded. It's probably frying your mind. But while we were on that call with the doctor, when we got off, I refresh my screen. And we jumped right past 2 million. So I missed it, it's gonna take a screen grab of is a little excited. I don't know what I would do with the screen grab, then once I had it, I'd be like, Oh, look, I have a screen bad numbers, two, comma, a couple zeros, comma, more zeros. Not sure what I would have done with that. Nevertheless, enter the giveaway. Get the swag. If you're looking for it, check out you know, maybe a win Jenny two. It'd be goodness for you. You know what I mean? Just help me celebrate the 2 million. I really appreciate. Every time you share the show with someone else, it grows the way it does, completely because of you. And you know, I've never done this before. But if I hit refresh now, so I checked how many downloads the podcast had, like 15 minutes ago. It has 123 more downloads than it did 15 minutes ago. Isn't that cool? is a very exciting. That's you guys. That's you finding the show, thinking it's great telling somebody else about it. That's you leaving great reviews on Apple podcasts so that when people get on there, they can say, Hey, I think this is a podcast I should check out. So whatever you can do to help spread the word. Thank you. I hope the giveaway is in some way. You know, an actual Thank you. But I mean, only one of you is gonna win it. So I mean, for the rest of you just know that I wanted to send that to everyone. I just thought What am I gonna do? If you tell somebody do about the show constantly. And you've already left a great review, and you're still thinking like, how can I help the podcast? start picking up random strangers iPhones, opening the podcast app and subscribing to the show? That's one idea. Thank you so much for listening to the Juicebox Podcast, tell a friend hit subscribe. Are you not subscribing subscribing your app, do it now. Get in there. Push the button, push it, push it. I'm being serious for a second. If you're the person who listens to the end of an hour and a half long podcast episode and you're not subscribed to an app. You're killing me. You understand? You're it's as if you're standing on my chest and jumping up and down on my heart. I just I would just, it would break my heart to know that you are not subscribed in an app.
I'm thinking about it now. Yeah, it's making me nauseous. You have to subscribe me You love the show. You got to subscribe. You don't love it. Don't subscribe. I hear what you're saying. But if you love it, I mean, it's an hour and a half in I'm babbling away at this point, push subscribe. Do you know if all of you who are just listening like I'll just download it once in a while, or I'll listen on the web. If you all just hit subscribe right now on a podcast app. Boom. We blow up like crazy on Apple podcasts jump right to the top. I mean, we're like around number 20. In our I'm now saying us like there's someone else. It's just me Just so you know. I'm like the entire podcast but but but the point is, is we we I think I mean me in the podcast. Why don't we just say the podcast the podcast would jump up to the top of its Oh, how exciting would that be if it jumped right up to the top of its little thing there where it's put in with other podcasts that are in the health and fitness category in medicine? Hmm. I'll tell you what, here's something I should do. Since I'm babbling on, like a lunatic. Let me tell you something here. I mean, throw some thank yous around. Here is a list of charts that we are currently charting on. Again, I said we makes me feel strange. I meant the podcast. Here we go. You ready? Thank you. United States of America for consistently putting me in the top 25 in my category. Thank you to Great Britain. for having me in the top 150 Canada seriously, top 15 way to be Australia. You're falling behind Canada here. I'm 117 over there. Germany to 14 I appreciate it Sweden. I don't know like it seems to be dropping in Sweden new Swedish people need to download some more episodes. Number 50 in Russia number 194. Norway number 29 excuse me number 29 in Norway actually getting in the in the parent. I see or 194 in the parental category number 29 in the sub category in Norway. Yo what's up Norway? Are you getting a shout for that baby? Ireland number 60 Thank you Denmark number 72 Thank you, the Netherlands 133 eu Netherlands is another one of those parent things in the parent category were 133 in the medicine category number four. Yo what's up Netherlands? New Zealand just felt 10 New Zealand at number 37 don't love that New Zealand get on it. download some episodes. Switzerland number 90, Austria 69 South Africa Belgium Singapore, Israel, Finland, the United Arab Emirates, Egypt and Qatar. I know Qatar you're like damn, did he say that right? Even though you put a queue at the beginning your name, I said Qatar the way I was supposed to. Thank you so much all of you all over the world for listening and for sharing. Do it more, more sharing, more listening, more subscribing. There can't possibly be anyone left listening at this point. I'm I'm now 100% sure I'm talking to myself. Hey, so it is 90 minutes since I recorded that last sentence. And I got motivated to do something that Non Us listeners have been asking for for a long time, which is to make an easy conversion chart. So when I say something like Arden's blood sugar was 120 You don't have to go I don't know what that means. You can just look at the chart and see that means 6.7. Anyway, Juicebox podcast.com, forward slash conversion. And I'm looking into putting a calculator on there as well. But for now, it's just the chart Juicebox podcast.com, forward slash conversion. I'm really sorry to everyone overseas, that it took me so long to do this. I have heard you're just countless, countless times that you've asked and I just haven't had time until right now. It was thanking everybody from overseas and I'm like, you know what, what am I doing here? I got to make this chart. I hope you like it. I'll talk to you next time.
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