#1437 Hey Jessie
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Jessica, juggling four kids and Hashimoto’s, explores Charlie’s T1D journey through device changes, school nurse hurdles, and gradual care handoff.
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Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox Podcast. Welcome.
Jesse 0:14
My name is Jesse. I am a mother of a type one diabetic. She was four years old. It was the day after Halloween, and she is nine, and she's doing great. Please
Scott Benner 0:26
don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. I know this is going to sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle, health.org, you know why they had to buy an ad. No one believes it's free. Today's episode of The Juicebox Podcast is sponsored by the ever since 365 the one year where CGM, that's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the ever since now, app no limits. Ever since, friends touched by type one's walk is coming up quickly on March 8 at the Saturday at Lake Eola Park in Orlando, Florida. Go now to touched by type one to sign up and register. It's completely free. You're gonna have a wonderful time. Touched by type one.org Go to the Programs tab, click on Steps to a cure. Hello.
Jesse 2:10
My name is Jesse, and I am a mother of a type one diabetic
Scott Benner 2:15
Well, I have children who grew up with Nickelodeon and things like that. So I'm gonna say, hey Jesse, and then we're gonna move on. You know that TV show? I
Jesse 2:24
think you emailed me that one time, the first time I reached out to you, when my daughter was first diagnosed, you were like, I'm gonna respond to you, even though I get so many emails, I'm gonna respond to you because of your name. And it just hit me a certain way today. It made
Scott Benner 2:39
me think of that silly TV show on the Disney Channel? Yeah, I wonder what happened to that girl. Let's not go down that rabbit hole just now. Okay, tell me a little bit about your family.
Jesse 2:47
I have four children. My type one diabetic is number two, a four. I've got book end boy, so I got boy, girl, girl, boy. We have a ginormous 135 pound German Shepherd dog who hopefully will not bark while I'm doing this podcast. I'm
Scott Benner 3:05
sure he'll be fine. How old was your daughter when she was diagnosed? She was
Jesse 3:10
four years old. It was the day after Halloween. Oh, and how old is she now? She is nine, and she's doing great.
Scott Benner 3:19
Five years ago on All Saints Day, her
Jesse 3:22
divers three falls on the same day that my dad died. Oh, you
Scott Benner 3:28
know, yeah, I only knew it was All Saints Day because it's my father's birthday, and he was not a saint, so it stuck in my head. Oh, that's crazy. Your father died on the day my father was born.
Jesse 3:39
Yes, he did two years after Charlie was diagnosed. Oh, not long ago. Yeah. So, yeah, yeah, yeah. Feels like quite a while now.
Scott Benner 3:49
You know, I'm gonna take a weird turn and ask your question. It's only a couple years ago, but it feels like a long time ago.
Jesse 3:56
Yeah, it does. At first it felt like time was moving really slow when he died, but a lot of life happens in a short amount of time, and that's something that I'm realizing as I get older, that each year just seems to fly by, which makes the makes time. I don't know. I don't know time has been very confusing for me, because I feel like Charlie's been diagnosed. Well, it has been. It's been most of her life. You know, she doesn't even remember not being diabetic at this point. Yeah, but that's how it feels. I feel like my my dad has been gone for so long. Yeah.
Scott Benner 4:31
Do you think that's a little because your life is so busy, like, do you think if your life wasn't so fast, you'd have maybe more time to think about that?
Jesse 4:38
Yes, definitely, for sure. And I'm also a stuffer, so I just try to stuff all those feelings down and not deal with them. And life is incredibly busy with four kids. First you
Scott Benner 4:51
said, stuff her. And I thought, is that like a furry? What is she saying? Does she go to a convention? Dress to something? No, no, you don't let your feelings out. Correct? What are we? Irish, English, Catholic. What are we? I'm
Jesse 5:03
a Christian, but I just, I have a hard time dealing. I don't want to deal with the emotions of my dad's death, so I just step them down instead. You know, my husband also lost his dad a year before my dad died, he has watched, you know his memorial video countless times. You know, we can't even count. We watch it all, especially every year. We watch it on his death anniversary. I made my dad's video Memorial video, and I still have only watched it the one time.
Scott Benner 5:36
Two different theories about how to handle this. You'd think your husband's trying to keep his father's memory alive. Or, do you think he's actually, that's what he's doing? Yes, it's interesting that you don't want to talk about this, and it's the first thing I wanted to talk about. I'm sorry.
Jesse 5:51
I apologize. It's all
Scott Benner 5:53
good. You want me to pivot, or you're okay, let's, let's pivot away from my dad. Okay, yeah. I'm not gonna oddly,
Jesse 6:00
oddly, he earlier, at one point in his life, he was a type two diabetic. So that's interesting. That's a little notation, and at that point, I didn't understand truly what that that even meant. At
Scott Benner 6:13
one point in his life, did he decide to quit? Or what do you mean at one point? No, he was able to reverse type two diabetes. Did he diet and exercise his way out of the diagnosis he did. Yeah, wow, good for him. So did he ever use insulin?
Jesse 6:26
No, he never used insulin. Okay, all right.
Scott Benner 6:29
Well, I, I'm gonna tell you this last bit so that everyone can figure out that I wasn't just being morbid. But today's August 15, which I don't usually times them these, but my father in law passed away on August 3, which was my wife and I's wedding anniversary, and the day that we left on the first family vacation we took in six years, we were on an airplane when my father in law passed away, and it was terrible, and we couldn't turn back, or, you know, right, cancel a trip. We had other people with us, you know, etc. And you know, my wife's family was lovely about, you know, preparing everything. And, you know, without us there, and, you know, to help. And then we got home and had 24 hours to get ready to go to his funeral, which got scheduled by the church on my mother's birthday, who just passed away recently, and then you get on and you're like, said that. I was like, oh, maybe we're supposed to talk about this. But, yeah, we're not. We're moving on. But I don't want to talk about it. Except Jesse ain't up for this crap because of reasons that she doesn't want to talk about on a podcast, although I am going to ask you one question, and then I'm gonna leave you alone on it. Do you go to therapy? I
Jesse 7:42
do not go to therapy. But it probably would be good to unpack that. But I'm a little bit afraid of I don't really want to unpack it all. There's a lot.
Scott Benner 7:53
Jesse's like, if it ain't broke, too bad don't fix it. Yep, just leave it alone.
Jesse 7:59
Feel like I'm coping. Okay,
Scott Benner 8:01
I haven't shot anybody, Scott, I've never car jacked anyone. I don't know what you want from me. I'm doing great. Yeah, we're doing fine. You don't randomly yell at people for no reason or anything like that. Just my kids. Oh, well, they deserve it for being born now, ruining your life. So tell me a little bit about your daughter's diagnosis. How did it come on? How did you realize what was going on when you think of a CGM and all the good that it brings in your life, it's the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox Podcast is sponsored by the Eversense 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The Eversense 365 is the only one year CGM designed to minimize the vice frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at Eversense cgm.com/juicebox, one year one CGM so
Jesse 9:24
my I have, I'm one of five, and my brother, who's closest in age to me, he is a type one diabetic, and he was diagnosed at nine years old. And so I had known the signs and symptoms of type one diabetes. I was not unaware of them. I just remember that Charlie had just started preschool, and it was right around Halloween, and she was also in this running club, and she started drinking so much water. She was normally not a big water drinker, but she was chugging water. I'm talking refilling. Her water bottle, you know, 667, times a day, and she was going to the bathroom a lot. Charlie also was like, complaining that her legs were always hurting, and she was getting tired when she didn't need to be tired. You know, she barely did anything. And she, you know, at four years old, you have a ton of energy. Yeah, yeah. She started showing those signs. I remember it was a Sunday because I took her to this running club, and she drank so much water at this running club, and she was complaining and she did not want to run, which normally, which was abnormal for her. And took her to school the next day, and I noticed that she had, her teacher had told me that she had drank a lot of water, and then when she got home, she had refilled her water bottle a ton of times, and then she took a nap, which was also abnormal for her, yeah, and she ended up wetting the bed. And Charlie had, you know, she had potty trained herself before she was two years old. I didn't have to do anything. She just one day, took off her diaper, put it in the trash and said, I pee, pee in the potty. Now, boom, that was it.
Scott Benner 11:06
And you were like, I'm the best parent ever.
Jesse 11:09
No, I was like, wow, she is brilliant.
Scott Benner 11:13
Finally, we get a smart one, that other one, we're gonna ignore him. Now, she really just made a proclamation, yeah,
Jesse 11:19
she took her diaper off, she threw it right in the trash can, and said, I pee, pee in the potty. Now, Mama, and that was it. I didn't have to do anything. It was the easiest potty training ever, because she did it herself, and she never wet the bed ever. She just went straight into panties. Never wet the bed. So when she wet the bed during a nap in the afternoon, it was confusing. You know, it was, it was not right that. So, like I said, this started on, like a Sunday, and Halloween was on Thursday, and I remember, on Thursday we maybe went, went to the bathroom, and then I put her in her unicorn, riding a unicorn. She was a ballerina that wrote a unicorn. So I put her in this this costume, and I inflated it right after she went to the bathroom, and we went three houses up the street, and she said, I gotta go pee pee. And so I knocked on the neighbor's door. She said, Trick or treat. And then I said, Can we use your bathroom? And she went to the bathroom, and then she was complaining, I'm so thirsty. So they gave her a water bottle, and she chugged a water bottle, and we went just a few more houses. Didn't even make it to the end of our block before she said, I'm done. I'm tired. I don't want to do this anymore. Yeah. So I walked her back down. She sat in the middle of our cul de sac with her dad, who was passing out candy at like, a you know, we had a fire pit, yeah? And she sat there. She drank hot chocolate and quite a few pieces of candy, and did not look well at that point. I remember it hit me right then and there, and I shot a text message to my brother, and I said, Hey, this is what I've been noticing since Sunday. You know, all the water drinking, the wedding, the excessive bathroom, and this is what just happened right now. Tell me that my daughter that I'm crazy and my daughter's not type one diabetic. And he said, I'm gonna tell you I think your daughter's type one diabetic. And I was, oh my gosh. It was so hard,
Scott Benner 13:15
not enough Kit Kats in the world to fix that. I was like, no,
Jesse 13:18
no, no, she's not. So I tell my husband about it, and I told him, Okay, listen, I'm going to we didn't have a meter at our house or anything like that, so I wouldn't have tested or been able to test her blood sugar. I said, okay, in the morning, I'm going to take her to the doctor. And he said, Okay, you do what you think is best. And then in the morning, we were sitting together, and she seemed okay, so I said, Okay, I'm not gonna take her to the doctor. And my husband said, okay, you know what's best. You do what you think. And then 15 minutes later, I picked up the phone and I called our pediatrician, and I said, Hey, I'm gonna bring my daughter in. I think she's type one diabetic.
Scott Benner 13:55
Also, a lot of people are telling me I know best. But Can I be honest with you, I don't know what the hell I'm doing. I think my husband doesn't mean that. I think he's just trying to stay
Jesse 14:06
out of it. Yeah, mine was just like, hey, look, you're the mom. You make the decision. And sure enough, you know, 15 minutes later, my decision was, I'm going to take her to the doctor. I just can't sit on this. So took her in, tested her blood sugar, and I remember the meter said, hi. She walked back in and she said, Oh, that's weird. It says hi. It must be broken, yeah, that's what the nurse said. I
Scott Benner 14:32
thought it was saying hello to me. I thought it was saying hello to me, Jesse. I remember as clear as the bell saying to my wife, oh, my God, this is so nice. It says hello to you before it gives you the number. It's not adorable.
Jesse 14:45
Yeah, I'm like the doctor. Heard her say that, though the pediatrician was walking by our room, and he heard her say that, and he walked in, shut the door behind him, and he said, That's not what that means. Yeah, also,
Scott Benner 14:58
we're letting her. No, but that's not for this conversation, right?
Jesse 15:02
So they they were super kind, and they just said, Hey, your daughter's type one diabetic, we're gonna need you to drive straight over to the Children's Hospital, and we're gonna call ahead and let them know you're coming. And I did not say a word, Scott, I didn't say a word. I broke down in tears. I scooped my daughter up. I didn't even get a checkout sheet. I scooped her up and ran out of that doctor's office, put her in the car. First person I called as I'm driving home was my brother, and I'm crying my eyes out, and I told him what they just told me, and he's like, Hey, you gotta pull over. You're gonna get in a car accident. You are hysterical, and I'm panicking, thinking, No, she's gonna die. Like, if I don't get her to the hospital, she's gonna die. And he's like, she's not gonna die, but I need you to, you know, he's like, did you call your Did you call your husband? I'm like, No, I called you.
Scott Benner 16:04
He told me I know best.
Jesse 16:08
So I ended up. He's like, Okay, I want you to pull over. I want you to call him. I want you to tell him what's going on so he can, you know, take work the rest of the day off and drive you there, because you're nuts and
Scott Benner 16:22
so that get some real feedback from your brother. He's like, you know, the stuffing thing, that's not your only thing, so stop for a second.
Jesse 16:28
Yeah? He's like, Listen, lady, you're gonna have a bigger problem if you don't pull your car over. So yeah, that is the story of Charlie's diagnosis. She was, you know, I noticed symptoms on Sunday and Friday she was diagnosed. So it was really, really quick. She, she must have been maybe, you know, looking back and looking at her a 1c when she was diagnosed, she, she maybe had type one for a couple of weeks. Okay, yeah,
Scott Benner 16:53
hindsight, you can figure it out a little easier. Obviously, start seeing more signs that you didn't see at first. Yeah,
Jesse 16:59
yeah. She had like, a cold prior to that as well. It's pretty
Scott Benner 17:03
well done on your part. I don't, I don't like, it's not nearly the worst one I've ever heard.
Jesse 17:07
Yeah. I mean, when we, when I did get her to the hospital, and they did, you know, they have meters that don't say hello to you. So her blood sugar was 568,
Scott Benner 17:15
okay, how long did they keep you or did they not? Two
Jesse 17:20
days, two days, two days, and we had to attend some classes. Could go home, and they gave us a bag of stuff and, like, two insulin pens, and said, best of luck to you the night I was the first night that I was in the hospital with her, because we had, you know, we had another kid at that time. So my husband went home, and I stayed with her. So I remember just I, I came across your Facebook page. Okay, I just started typing in Facebook in the search. I just started typing in things. And then I was in a, you know, different diabetes things, Georgia, diabetes groups, things like that, one person had mentioned on their Juicebox Podcast, and so boom, I found it right away. My brother was super sweet. He overnighted a Dexcom, okay, transmitter and a and a g6 to us so that when we were released, we had one, because I had asked the endocrinologist for one, and he said, now he wouldn't give me one. How come did he say? Why he did not? He just said they want us to get familiar with accurate readings. And I thought, This guy is absolutely nuts. And that was the beginning. Start of me, I don't trust these doctors to make decisions anymore. As soon as he told me, No, my brother overnighted us one. And then I just went, I realized, hey, I can log on to their website and request a Dexcom and that's what I did. And then they contacted me. Dexcom contacted me. I gave them my insurance information, and then I was able to they needed a prescription, obviously, and I switched who I wanted the endocrinologist to be.
Scott Benner 19:04
That was that nice and easy, and that was it. Can I have a Dexcom? Please? No. I'm gonna start advocating for people to say, douche bag. Says, What after that? Yeah, yeah, I
Jesse 19:13
know. And that's when I realized that this is what this is. This is the ball game that they want to play. They they just, I don't know why they would say no, but I realized I've got to take this into my own hands. Why would they not want us to be able to have a Dexcom that gives us so much information and just peace of mind? As a parent with a with a child, you know?
Scott Benner 19:33
I mean, I guess you can go round and round on this point, and I have and I could do it again, but I get both sides of the argument, like, hey, just, you know, do it with the meter at first, so you can figure it out, you know? But I don't know what it is you figure out, because I look back on my own life, and I couldn't figure out anything with just a meter. It wasn't until I got a CGM that I was like, Oh, I see patterns and cause and effect and oh my gosh. Like, I. Make changes. Like, you know, like, that kind of thing. So, like, is it just an old thing? People say, Yeah, you know what I mean. Like, like, is it leftover from When insulin pumps came? And people, I
Jesse 20:12
really, really do feel like it depends on what dark so, like, for example, that endocrinologist that told me No. Was an older endocrinologist. He he's not, you know, up with the technology and probably didn't trust it, right? That's why He said No, and that's what I found, even when I switched endocrinology offices altogether, the first endocrinologist that I saw at this new office, I asked him for a pump right away, and he said, No. He said, I want her to be diagnosed for at least a year. I want you to get familiar with giving injections for a year. And I thought, Why? Why would you put her through that for a year? If there's
Scott Benner 20:54
two ideas I have, if one is, I'm an old guy and I don't know how to use this newfangled thing, and if you're using it, you're going to ask me about it, then what am I going to say? Yeah, you know, I'll get exposed or really, maybe they really do feel like, well, what are you going to do if a pump, you know, if you can't, if your pump breaks, or whatever? And I mean, my answer to that, and I understand that, I don't disagree that you should understand how to manually take care of your diabetes. I'm not minimizing that at all, but a year, where'd you come up with a year? What if I get it figured out in six weeks?
Jesse 21:25
I switched. I was like, All right, I'm done with this guy. So, um, switched to a different endo in that office, and she was much younger, and she and I said, we want to get on an insulin pump. And this was, you know, we had been, she had been Charlie, had been diagnosed. I mean, maybe three, three months at that point, and her a 1c was already 6.0 so she was like, I feel like you've got the hang of this, and I feel like we could get you on an insulin
Scott Benner 21:53
pump, right? I mean, that's, I think that's the bigger point. Is like, stop lumping me in with everyone else. Like, maybe I will figure it out quicker. You know, just because maybe your average is a year or and by the way, it's not even some people will never figure it out. They just eventually go, Oh, you're not figuring it out. I'll give you a pump and see if this helps,
Jesse 22:10
right? And I, and I remember just being like, I'm giving this little girl 14 plus injections a day because I wanted her in such a tight range, right? Yeah. So I was like, I'm I'm trying to dial this in here, and I'm having to give her all these injections. Why not just give her a pump where I can do these small increments to get her where she needs to be?
Scott Benner 22:33
No, I mean, I agree. I would want if, knowing what I know now, I would leave with a with a pump and a CGM, yes right away. Yeah, even knowing that if I put myself in that position, I wouldn't completely understand what I was doing, I would still rather start there. That's my opinion. So, yeah, you know, it's funny why you're talking about this. I have this note that somebody sent me recently, rattling around in my head. It was very well intended and kind. And the person said, you know, there was somebody on a recent episode, they really gave it hard to their doctor's office. And I think this person works in medicine, and people are trying, and I'm like, well, you're trying, and that's why it strikes you that way. You don't know that the people they're dealing with are trying. But at the same time, I It's so funny. If you ask me, Do you think your podcast beats up on the medical community, I'd say absolutely not. Like, I just think where people are telling their stories, and if that's what their story is, then you know what I mean? Like, that's not beating up on something, it's reporting what happened to them. So, right, right? It's not my fault that so many people have that story. You know,
Jesse 23:32
correct? Yeah. And I feel like that's the norm. A lot of people have the same story, and it's unfortunate. I do agree
Scott Benner 23:41
that people don't jump on podcasts to say positive stuff all the time. Like, you know, I mean, like, you don't jump up on Facebook to say, Oh, well, everything's going
Jesse 23:48
yeah, I will say, I love our endocrinologist. Now she's, she's phenomenal, yeah. And my biggest thing with her is she, she trusts me to manage, and takes everything I say to heart. And so we work more as a team. Yeah? Instead of feeling like we're working against each
Scott Benner 24:05
other, gotta be like that. It's really the only way it works well, so and type one
Jesse 24:10
is so personal, you know? Yeah, so the way that I manage my daughter's type one diabetes is not going to be the same as another child. It looks differently. I
Scott Benner 24:21
remember when I put the Pro Tip series out originally, and I got this note from somebody that says, like, you know, everybody doesn't do what you do. And I was like, Oh, I didn't think everybody did. Yeah, that's not why I put it up. Yeah. I thought, Oh, gosh. Like, do you think I'm saying to you, this is the exact way to do this? I was like, This is what I'm doing. Here's my outcomes. Take some of it, all of it, or none of it. I don't care. See what works for you. Yeah, yeah. I hope some of it helps you. And if it does great, and if it doesn't like I mean, I'm not coming to your house like, you know what I mean,
Jesse 24:54
right? I mean, we should all be learning from each other. I mean, I just spoke with one of my friends this morning, whose son is. Is type one, and you know, she Oh, wait, no, that was yesterday when I tried to hop on your podcast yesterday. Oh, we're definitely
Scott Benner 25:06
going to talk about that. Jesse, at some point,
Jesse 25:10
I was late to it, because I was actually trying to help my my girlfriend out. Her son had ketones, and I was just trying to walk her through some steps, you know? Yeah, so I was dealing with diabetes, and then I thought that I missed my appointment. You
Scott Benner 25:25
want to do this now? I had a 9am recording yesterday, and then I had an 11am recording so in between, I ate two eggs in a wrap, and I was getting up to my computer. Like, I was excited. I was, like, a couple of minutes early for my 11am like, Look at me. Go and I open up my email to look at that before I jump on and there is a person, like, frantically emailing me. It felt like like I've been on this call for 25 minutes. I don't know what's wrong or where you are, and I'm looking at the name, and it's not the name of the person who I'm recording with at 11 o'clock. I don't understand what's happening. And you know, I opened up the application to talk to the person 11, because I got to be honest with you, I was just going to respond back to your email and say, I don't know what you're talking about, but, and I jump on and then there's two people coming into the Zoom, and I'm like, the hell's happening, and I let you both in. And because a handful of times in my life, I'll set up a recording with someone, and by the way, no one do this to me because I really don't like it. You'll say, like, oh, I want to come on and talk about this. And then you'll surprise me with a third person. And you're like, I brought my mom on. I thought she'd be interesting. And I'm like, that doesn't sound as good. I know I got to split up the conversation between two people. Like, I would have preferred to know about this before I was going to do it, but people will spring it on me sometimes. But the person I recorded with yesterday at 11, Sam, like, I know her. Like, I know her, know her, like she works for touch by type one, or volunteers for touch by type one, and I've known her for like, a decade. I'm like, she would not do that to me, but I thought, well, maybe she did so like, I'm like, okay, hey, Jessica, what's up and and I'm like, trying to figure out. I'm like, Sam, do you know Jessica? And she goes, No, I have no idea who this is. And I was like, oh. I'm like, wait a minute, Jessica, who the hell are you? And then we looked and realized you were 24 hours early for your recording. Yeah, yeah, yeah.
Jesse 27:19
And I thought I would, and I thought I was late, so I actually did well. I crowded myself.
Scott Benner 27:24
And then this morning, by the way, you were like, two minutes late, and I thought, Oh, she's getting back at me.
Jesse 27:31
I told you, life is so crazy. There's too many people schedules to manage. And then at the same time, I'm trying to manage, you know, diabetes, just like, Yeah, I'm trying to manage diabetes. I'm helping other people with their diabetes, and
Scott Benner 27:43
trying to get that German Shepherd not to kill you. I think sounds like it's huge. Oh, he's
Jesse 27:47
the he is a sweet boy, but yeah, if you were coming to my door, you'd think, I'm glad there's a door between
Scott Benner 27:53
that. So in your notes to me about coming on, I love you. Have two topics in here. I love both of them. I want to go through both of them, yeah, trying to strike a balance between keeping your daughter's care good, giving her some autonomy, but not overwhelming her. I think this is after you learn about how insulin works and how all these gadgets work, and what the hell the smokey effect is. And once you've got all that down, I feel like this ends up being the long time goal. I almost said burden, but I don't mean burden, like burn, but like, responsibility of a person raising a small child with type one, like, I want her to be healthy now. I want them to understand this. I don't want to overwhelm them. Can you talk about that with me,
Jesse 28:41
yeah. So actually, that's been my goal with her from the beginning of her diagnosis. It was, you know, I want to, I want her to understand everything, right? But as a child, there's only so much you can take on, and I don't want her to to bear the weight of type one diabetes herself. I want her to understand, like I'm always going to be there. But ultimately, I am raising, I'm raising a person who's going to be an adult with type one diabetes, right? So when she becomes a certain age, she's going to have to fly the nest, right? And so she's going to have to understand, okay, what do I do here? My mom is not doing it for me. I don't. I don't ever want her to, so I'm trying to give her bits and pieces as we go. And my biggest thing is what is too much for her, because everyone always tells me, your daughter is so responsible. She manages her type one diabetes so well. And I'm like, okay, that's me, but
Scott Benner 29:49
she's nine. But okay,
Jesse 29:52
she's nine, but I am so I've been giving her bits and pieces last. Her was her very first year at school managing her diabetes without the nurse. I was done with the nurse. Love them. And I'm not coming on to hate on our nurse, but there's only so much that they can do, because there's protocols in place to protect their jobs. That's
Scott Benner 30:18
how I'm gonna stop you that love them sounded very southern and reminiscent of, Oh, bless your
Jesse 30:24
heart. I am in the South.
Scott Benner 30:27
Just I heard a lot in those two words, but go ahead, I
Jesse 30:29
do. I did love my nurse, but we got in fights probably three times, three maybe three to four times a week, three
Scott Benner 30:38
times a week. I thought you're gonna say three times. I have something stuck in my head because it came up online the other day, and it's your it's your secondary thing. But you kind of like you. You're blending the two ideas together. So I don't feel weird blending them together. I am fascinated when a nurse reaches out to a healthcare team without your Okay, and starts talking to the doctor about your kids medical stuff.
Jesse 31:04
Oh, I've heard of that happening. Yeah,
Scott Benner 31:07
yeah. I happened to me once. I happened to my daughter once. I did not react well to it. Like, for all my like, become, don't do stuff, you know. Like, I called the nurse's office and I was like, did you call my daughter's endocrinologist? And she goes, Yeah. And she started talking. I went, do not ever fucking do that again. And she goes, what? And I was like, What the fuck do you think you're doing? I was like, You're calling my kids doctor. Who are you? You're not me, you're not my wife, you're not my kid, you're a stranger. You're a lady who has a job at the high school. You don't have anything to do with my daughter. I I said, Jesse, I want to be clear. I think I said at her about four times in a 32nd call. And when I was done talking and she started talking, I said, I don't give a shit what you're gonna say. I'm done now. Don't do that again. And I hung up the phone, like, so it put me I was like, What in God's name, do you think you're doing? Like, really, I handle it very poorly. I want to be clear about that. First, there
Jesse 32:03
was somebody on one of your podcasts recently who shared, I feel like that you interviewed that had a similar situation. Yeah, it happens a lot. You know, I specifically put in our medical management plan certain things so that that couldn't happen because I was tired of the nurse telling me, oh, you can't make these changes in her pump, like changing her car ratio, right, or changing her basal rate for a certain time of day, like when she was at school, the nurse would tell me, oh, you can't do that because your your DM, MP, says that you can only change it by this much, and you're trying to change it by over that amount. And I was like, I can do what I want. I was always telling her that I can do whatever I want. This is my daughter,
Scott Benner 32:46
right? I don't usually say stuff like this, Jesse, but America and all, you know what I mean, like, I'm free here. Like, if I'm not hurting that kid, there's literally nothing anybody can say about how you're doing what you're doing with your child, right? We certainly were, by the way. I later, as I calmed down and went back and spoke to her, I don't even she, was trying to find out something that it wasn't even about. I was like, I'm like, I don't understand why you think this is okay. But it wasn't even anything like that. Like, you're trying to move her insulin to carb ratio to one to 15 or something, and the orders say it's one to 20, like that, like that kind of thing. It wasn't even that. Are you telling me that the school nurse for your daughter had so many opinions about how to manage her insulin and did not want or are you just telling me she didn't think you had the autonomy to make changes after it was written down both,
Jesse 33:37
both so she didn't want me to make any changes without updating, having an updated diabetic management plan. So if I wanted to change her car ratio or her basal rate for a certain time of day, because I was like, All right, so this, you know, whatever day this is, it's just not working anymore, right? She needs more insulin. That's it. Is what it is for snack time she she can't be a one to 10 anymore. She's got to go down to one to six, whatever it may be, yeah? She would say, well, we're, you can't do that unless you have the doctor fill out and sign a new diabetic medical management plan. I'm like, I'm going to do whatever I want.
Scott Benner 34:16
Yeah, also, you're, you got a little kid growing, changing all the time. Like, you know, these things are going to change, if you understand, insulin, these things are going to change frequently, if not daily. Sometimes I gotta call the doctor every time, right? Or did you just hit her with leave like, mind your business.
Jesse 34:35
No, I told her. I tried to come at it from like, a knowledgeable perspective and explain that to her, and she's like, well, I could lose my job. So I ended up going to our endo and just telling them, this is what I need you to specify on here. And she just checked a box on there that said, I think she added in an extra box because it wasn't there. She added in an extra box that said that the parent guard. In can make whatever changes she wants to. Yeah,
Scott Benner 35:02
that's the magic sentence in a 504 plan. Everyone should know that and have it in theirs. Here are all the rules, here are all the numbers, but here's the sentence for you, so the nurse doesn't feel like she's gonna get in trouble, which, you know, I can obviously understand, yeah, from the nurse position, but, but it's also in the middle of the day when you have three other kids and you're married and you're trying to, like, you know, do whatever else you're doing, and, you know, you don't need somebody stopping you every five seconds saying you can't do that, because that's all you hear. Right? What she should have said was, I understand that this is a good idea, or you think it's a good idea, but if I do that, I'm going against these written orders. We need to change these written orders so that I have more autonomy to listen to you. And then, yeah, all done. You know,
Jesse 35:44
I would get so angry. I was up at the school multiple times a week because my daughter would always come home and be like, I got in trouble because I gave myself insulin. Because I would text my daughter and say, you know, let's say you're like, she was like, 220 and I'm like, You're high. You need insulin. So I text her, and I tell her to dose, and she gives herself insulin, and then she goes to the clinic at some point, and the nurse sees that there's insulin on board and that it was dosed, you know, from her pump. And then she yells at my daughter for doing that. And I'm like,
Scott Benner 36:15
really yells at her, like, raises her voice, or just chastises her. What are we talking about? The way
Jesse 36:20
that my daughter explained it to me was that she would, she would yell at her. She would say, you cannot do that in an elevated voice. And you know, my daughter would say, my mom told me to and she said, Well, you have to listen to me at school. And then my daughter would get home, and I'd say, You don't listen to that lady. You listen to
Scott Benner 36:37
me. Hello, random lady who works at my school,
Jesse 36:42
but we have, can you
Scott Benner 36:44
imagine, in any scenario, I send my kids somewhere, my nine year old somewhere, and a person feels comfortable telling them, don't listen to your parents.
Jesse 36:53
Yeah, I know I had a big, big issue with it, so that's why last year, we actually got a new nurse after that, and she was super kind. We ended up loving her, but that's beside the point. But last year, I said, going into her school year, this was her third grade school year, I said to her Endo, hey, we're going to be done with the nurse situation, and we're just going to manage ourselves. And she said, Okay, you said, if you think that she's ready, then I think that she's ready. And I said, Okay, great. So we changed everything on her management plan to be all like char, that Charlie could do it all herself. She rocked third grade doing that. She just wore an Apple Watch and kept her phone in her backpack. And every time I would text her, she would just do what I said so she could dose when her blood sugar was high, if she was low, she was just staying in her classroom and drinking juice or having some fruit snacks at her desk,
Scott Benner 37:51
just what everyone else does who has diabetes. Yeah, yeah, but
Jesse 37:55
they wouldn't even let her treat in the classroom before, even though her plan said it, her nurse was just like, I'm still not comfortable with it when she was in second grade. And I'm like, I guess you don't understand. Like, we've been doing this for so long that she knows, yeah, when I tell her, Hey, your blood sugar is low, drink six, six sips of a juice box, that chick is going to drink six sips of a juice box. I guess she just had a hard time. And I and I get it. We're at a new school this year, actually, and her nurses are freaking out because my daughter has so much independence. They said they've never had a type one with so much independence. So her blood sugar was low yesterday after recess, because I just figured out yesterday she has snack and then goes straight out to recess. Okay, so a new school year, right? Yeah, yeah. I'm like, oh, okay, all right, so now we know that, so we're not going to be dosing accordingly, you know, we're going to change our dosing strategy to accommodate for activity outside, right? Whereas my daughter was like, oh, okay, I'm going to eat this protein bar and I'm going to dose for it, and then I'm going to go outside and 52 double arrows down was about 15 minutes later. So they called me freaking out yesterday. The nurse and I had already talked to Charlie, and she had, you know, told me, I'm I already drank half a juice box. I'm good. I'm I'm chilling inside now. But they called me and they're like, Hey, we're kind of freaking out here. We saw that her blood sugar was dropping. We just need to know, is she okay? We're gonna go see her. And I'm like, she's fine. She's already treated. And then about 10 minutes later, they text me. They're like, we're sitting with her. She looks great. I'm like,
Scott Benner 39:27
well, see now that. I think that's nice. I think that's great. Yeah, I
Jesse 39:31
had no problem with it, of course, but it was just a completely different situation this year. They're like, Hey, she has too much independence. We're not comfortable. We just want to put eyes on her. I'm like, she's okay. She'd tell me if she wasn't okay,
Scott Benner 39:44
go stare at her. That's fine, waste your time, yeah, but no. I mean, I like that 52 double hours down. I like the nurse going and looking for the kid. Nothing wrong with that. Yeah,
Jesse 39:51
no problem. But I said, Hey, would it make you all feel better if I just shot you a text message and said, I've talked to her. She's treated you know? Yeah, I'm sure it would Yes, please, please keep us in the loop. You're gonna
Scott Benner 40:03
end up building a nice relationship with them and and that's gonna be good, yeah, for sure. So tell me something about it's weird for me sometimes when I like, I know you listen to the podcast, right? So when I hear you say something and I go, Oh, I really like that idea. I don't know if it's a thought you heard from me and you're putting into practice, or if it's something you came up with, you're on your own. And as the podcast grows, I should start asking that more often, people are gonna think I'm asking to, like, get credit, but I don't. I don't mean for that. So this idea of, like, the the slow matriculation of knowledge and responsibility that I'm I'm a lot about that. I, by the way, I just think that's a good parenting skill, not necessarily a diabetes thing. Over the years, I've taken a lot of crap from older type ones. You know, when Arden was much, much younger, they'd be like, Oh, well, you do everything and she doesn't understand it. And I'm like, no, no, she understands what we're doing. I'm just not like piling it on her. Also, I just interviewed a 36 year old lady last week who sounds like she's imploding from the inside of her brain, because, you know, when she was eight years old, her parents were like, it's your disease. Take care of it and abandon her, basically. And now, as an adult, she's still struggling. And just told me a horrible story about she didn't pay attention to her blood sugar all through college. And like, you know, but, and I'm like, so, you know, it's like everything else. I think they went through something one way. They hear someone else doing it differently, and they go, Wait, do you see that's not gonna work? And it worked exceedingly well for me. But is that where you got the idea, or is it just common sense to you?
Jesse 41:36
No, I'd say it really came from seeing what happened to my brother. My brother was diagnosed at nine years he was nine years old. It was on his ninth birthday that he was diagnosed. My parents didn't teach him anything. My mom, okay. My mom, as far as diabetes goes, Bill this one's gonna die. My mom, there was so much responsibility put on him at nine years old, that it carried such a weight on him, and it has, it has really, really caused a lot of problems for him. It's a heavy weight for a kid to carry, and I can't imagine put, you know, having my daughter who, who is type one, having her carry that burden herself, and so seeing the damage that it did to my brother with all my mom did was really, she would pick up his prescription, she would drive him to his endocrinology appointments. But my brother didn't have a CGM back then. He had, you know, a little a book, and he would just have to record his blood sugars. He'd test on a meter and write it down, right? And he he did get a pump. He went through a few pumps, because he was a boy, so he broke a lot of pumps. I remember my mom really giving that responsibility to him. I really vividly remember him giving his own injections, yeah, and that was with like a syringe, not a pen, like the glass ones, yeah. And I'm like, Oh my goodness. So I saw the mental toll that it took on my brother, and with that, I've been like, okay, all right, how do I give her little chunks here and there to help her, you know, have autonomy over her type one diabetes, to understand how insulin works, to understand how her body is working, and be able to manage it as she gets older, but also not overload Her so then she's like, stuck and needs therapy, right? Great,
Scott Benner 43:23
perfect. And you're doing that, and what are you finding to be the the key to this? I feel
Jesse 43:29
like we have, like, a goal ever, or at least me, I have a goal every year of like, okay, I'm going to give her a little bit more independence here, right? So this year, last year, for example, it was we're going to ditch the nurse at school, okay? And we're going to manage together. I will tell you what to do, but you have the freedom to hey, if it pops up on your watch and says low blood glucose, you know what to do, right? You know to treat it. And just shoot me a text and say, I treated my blood sugar, and she did that this year, it's okay. I want you to start calculating your carbs or making educated guesses. You know, if you don't have the you know, if you're eating something and it doesn't have a package with carbs on it, okay, let's make an educated guess. You've been diabetic for long enough now that you should be able to look at a plate of food and be like that. Looks about 40 carbs. That looks about 25 carbs, because, you know, and I've been trying to teach her, I taught her what a Rolodex was recently, okay? I said, That's what your brain is becoming. So you need to allow your brain to become a Rolodex, right? So, just, you're adding to it all the time. So, you know, a large apple is going to be about 25 to 27 carbs. Okay, great. You know that? Plug that in? It stays in the Rolodex of your brain. You know how to dose for a banana? Because you eat bananas all these things, right? So I'm like this year, her goal is being able to look at a plate of food and be able to make an educated guess about how many carbs are on that plate. Dose for it, see how it goes. So.
Scott Benner 44:59
Nice. Do you guys practice over the summertime? Yes, all
Jesse 45:03
the time. And actually, I just switched her. She's, she's going to a hybrid school now, so she's only in school two days a week, and she's homeschooling three days a week. So that gives us even more time to to work on that. That's awesome. Good for you. You know I want Oh, and another thing, actually, she added this one on this year. Was changing her Dexcom herself. Okay? She wanted to be able to change that herself and put one on and she has put her last two Dexcom on herself. Because normally I do that for her, and she's on the T slim, so I fill her cartridges and all that. And for the last three years, she's been watching me do it, and, you know, we try to create fun videos. And like, you know, she's in that she's that age range who they love, like Tik Tok and all that stuff. Yeah, she doesn't have a tick tock, but she will make videos on her phone of herself doing stuff, oh my God, and save them for herself.
Scott Benner 45:58
Jesse, anybody who thinks that's crazy, if you look at Arden's iCloud folder from like her lifetime, it is just them making videos from the time they were little with their friends. Oh
Jesse 46:08
yeah, I did the same thing as a kid. I just wasn't doing them about type one diabetes. But you had a cell phone when you were a kid. I had a cell phone at 11 years old. How old are you? What year is it? 24 I'm 34 Oh,
Scott Benner 46:22
look at you. You're so much younger than me. It's amazing. I just did, yeah, no. I mean, seriously, I was like, you have it's the four kids thing that threw me off.
Jesse 46:30
It's the four kids. Yeah, no, I've got four kids, and I'm 34 and I definitely don't feel 34 I'll tell you that
Scott Benner 46:37
you feel older. Yes, how old were you when you had your first 24 can do basic math? You're like, I could do math before I got pregnant four times. Yeah,
Jesse 46:47
I was 23 I was 23 when he was born. I had just turned 23 and then two weeks later he was born. Wow. How old were you got married 21 Yeah. He's Yeah, yeah. I was a baby. So now I look at 21 year olds, and I'm like, You guys probably should,
Scott Benner 47:04
don't use that. Yeah, how did your husband trick you into that? Do you remember? He
Jesse 47:08
says that I tricked him? Oh, that's also
Scott Benner 47:09
possible.
Jesse 47:11
He Yeah, he says I tricked him that I I acted like I was gonna be No, I'm just kidding. I'm just joking. I'm not gonna go there. No, he does say that I tricked him into marrying me, but that's it. That's got to be a joke, because the same age, he's the one who pre Yeah, he's one year old. We have the same birthday, he's one year older. Oh,
Scott Benner 47:31
wow, look, even a person your own age, that's crazy, yeah,
Jesse 47:35
but he's the one who proposed to me, so I'm not the one who asked
Scott Benner 47:38
him. He's the one who proposed to you after, after you said, I'm leaving. And he was like, Wait, where's this girl going? No, he actually,
Jesse 47:45
you know, funny story is, we only dated for four months before he proposed. How
Scott Benner 47:50
long were you engaged? Five months. Oh, wow. Super quick. You were married in under a year of knowing each other at 22 and 21 yes, yes. And you're still married.
Jesse 48:03
We're still married. Yeah, we're about to celebrate 13 years. Interesting for you look at that, yeah, and we have four kids,
Scott Benner 48:10
yeah? Well, I mean, now no one's going anywhere, nobody can afford to live, yeah? I mean, really, yeah, that's ridiculous. Even if you wanted to, you'd be like, I don't know how to accomplish this.
Jesse 48:20
I know. And, yeah, you know, it's been a it's been crazy, because he didn't know anything about type one diabetes at all. And then our, our daughter was diagnosed, and he does, you know, we've had some hard times, and you know where we have, you know, I felt like I carry more of the burden. I say burden, but it is a burden. I'm not gonna lie, it's a burden. Um, type one diabetes is not like a cake walk, sure, but now I feel like we have a good system going. Now that you know, you've been married for a long time, right? I think
Scott Benner 48:51
my 28th anniversary was the other day, was it?
Jesse 48:56
Yeah. So, you know, like you got to communicate to make this thing work. And so I remember at one point just being like, Hey, listen, I'm do I feel like I'm doing all of this and I need help, because I can't carry the weight of it myself, and I need help. So, yeah, we share duties of, you know, like changing her her sites or and stuff like that. And he's got a calendar in his phone now, of to make sure that we change it, you know, just like a reminder that pops up every 48 hours to change it, yeah, and all that. So we share it very well now, but I would say since so I stay home with the kids, and you know, he's got a full time job, so during the day, when he's working, it's me, like I'm managing her type one all day long, she's gonna come to me first before she would ever go to him, Okay?
Scott Benner 49:42
And do you find that he's learning about it in a meaningful way? Or I had
Jesse 49:48
him at the beginning, I was like, hey, I need you to listen to this podcast. I need you to understand, you know, because I was trying to implement all these new things, yeah, and that I learned from your podcast. And I'm like, it's gonna wake make. Way more sense if you just listen to this podcast and you you hear what they're talking about, you know, like the Pro Tip series. I had him go through the Pro Tip series, yeah? And even just defining diabetes, you know, because I'm like, you know, we need to be on the same page so we can manage this
Scott Benner 50:14
together. I can't be saying words you don't understand. Yeah, I've even left
Jesse 50:18
him and gone out of town, and he's got it. Oh, I
Scott Benner 50:21
look at this. He's trainable. This is lovely. He's great. Tell me, how did he react when you said, I need you to listen to a podcast. He
Jesse 50:29
just said, Okay, can you put it on my phone? That was it? Jesse, I'm
Scott Benner 50:33
gonna say something. That's gonna sound weird here, but hopefully it won't. You were on video for five minutes when we first started. So I now know what you look like, you're pretty you could probably get boys to do what you want. I would have trouble. I tell my wife to do something, she looks at me. She goes, I don't think I'm doing that. She doesn't look at me and go, Oh, I don't want him to leave. So I guess I'm gonna accomplish something. You're working at an unfair advantage, is what I'm saying. Oh, please. Because in my mind, you say, Go listen to a podcast. And he walks out in the garage and, like, just screams into a towel. It's like, oh my god, I can't believe I have to do this.
Jesse 51:08
You know, he cares about her. And so he was like, All right, I got to learn. He's always looking to learn and grow, too. So he's like, all right, if this is what you think will help. And sure enough, it does. And you know, what's been very difficult is getting my brother to listen to the podcast.
Scott Benner 51:22
That's tougher. The he's had diabetes a long time, 27 years. No, okay, I can do basic math. You said he was 36 right? He's 36 Yeah, diagnosed when he was nine. Yeah, okay, yeah, that's excellent. I remembered all that, which I'm super impressed by. Oh yeah.
Jesse 51:39
Okay, so I did do the math, right? Yeah, keep in mind, I'm homeschooling my daughter three days a week, so that selected me,
Scott Benner 51:44
Mommy, what was the revolution? I don't know. Go ask the computer.
Jesse 51:50
I know. I'm like, Hey, you have, you know, I just recently told her. I'm like, hey, you've got a calculator on your insulin pump. You don't have to add it up in your head. Just push, okay. This package says 25 cards. Press the plus button. This package says 30 carbs. Press the plus button. Boom, you got it.
Scott Benner 52:06
It does it for you. I'm going to tell you something in about a month when Apple releases the new Siri. It's basically going to be AI. You're going to just be able to ask it like math, and it's finally going to, you know how everyone wishes Siri worked, but it doesn't, yeah. Oh, I hate Siri. It's gonna work like that now. Oh, good, yeah. So good, right now, if you ask it to add something up, it takes you to a website, and you're like, What in hell are you doing?
Jesse 52:30
I cannot stand Syria. I don't know. I have a huge problem with it. It never listens to me when I need it to listen to me, and it doesn't ever, you know, it's always like when I tell us something, like, You're not listening,
Scott Benner 52:41
it's going to be completely different very soon. So good. So T slim, you said control IQ,
Jesse 52:46
Yep, yeah, control IQ, I love it. Love, love, love it.
Scott Benner 52:49
And how did you figure out? Like, I mean, obviously started with some sort of injection, so you didn't stay with it very long. Did you go right to T slim, Was that your first
Jesse 52:57
pump? No, I we did the Omnipod. She has a pretty severe allergy to adhesive, okay, having that pot, I mean, she was, it was not working for her. And then on top of that, we have a pool in our backyard, and she was losing pods every single day. They just wouldn't stay on. We had, you know, I tried everything to keep those things on, and they would just fall off. And I said, All right, forget it. We I think we had them for four to five weeks. And then I was
Scott Benner 53:27
gonna say, Isn't it funny people's skin types? Yes, because we just got back from, like I said, we were on a vacation. It was a beach vacation. Arden does not wear over patches on her OmniPods, and she didn't have one thing, and she was literally just in the ocean constantly. Not one pod fell off, not one CGM fell off, like it just her skin just works well with the adhesive. And some people just don't,
Jesse 53:53
you know? Yeah, I do. Where, where do y'all are up north, right?
Scott Benner 53:57
I live in New Jersey, but we were, we were vacationing in the Caribbean. So, oh, okay,
Jesse 54:02
all right, so nevermind my I was gonna say, Well, maybe it's the humidity, because I live in a pretty humid environment, but, but, yeah, we're super it wasn't working for her, and I was, I was tired of it, so we switched over to the T slim, and have not gone back. She's about to be or she's about to get a new pump. Okay?
Scott Benner 54:21
She's been had it almost four years. I'm thrilled it's working for Yeah, yeah. Where are you at in your mind about the handoff of information? Like you bother yourself with an idea of, like, at this age, I'll be less involved, and at this age I won't be involved. Are you just watching it and just letting it be what it is.
Jesse 54:41
You know, I feel like I listened to a podcast that you talked about about this. This was before Arden was leaving for college. I remember listening to this one. I kind of took that to heart. My goal is by the time she's ready to leave for college is for her to be in a good place, to be able to manage what. Without me, and that's when I can be less hands on, but as long as she's, you know, and I've told her this too, as long as you're under the, you know, like our roof, and as long as you need me, I'll be there for you, and I can help you, but you need to start owning this as your own, because, unfortunately, it's not going away. I'm a realist, you know, and I'm straightforward with my kids, so, you know, with her, I'm telling her, Listen, I wish there was a cure for type one diabetes. There isn't do I think there will be. Who knows, at this point, you need to have it in your brain like, this isn't going away. This is my life, and I need to learn how to manage it. So let's take little bits, year by year to get you to a point where you don't need me and you can make decisions. Is that going to be 16 years old for her? I don't know. Is it going to be 18? I hope so, but I do think that I will always have to at least help her in the night time, you know, like calling her and stuff. I still
Scott Benner 56:01
pay attention at night at college, like I don't have to be as involved, and Arden's very good at it. But there's, I mean, there's stuff that happens. People get sick, you know, Arden sick right now, just tonsillitis, and it's terrible. And she's been sitting on the same chair in our living room for three days, and she slept there the last two nights. She can't even pull her ass up to go upstairs, to go to bed. Uh huh. If she wasn't home right now, if she was at college, she'd still be taking care of her diabetes. And last night, I mean, she's been her insulin needs have been, you know, very commiserate with fevers and, you know, and being ill and everything, she clearly has some sort of a virus happening. I texted her last night, like, 1130 I was like, Hey, I think you should test right here. Like, I think this is a time where I feel like you need a pretty big Bolus. It's getting late at night. Let's make sure that this number is super accurate before we before you make this this next Bolus, can you test? And she goes, I don't have my stuff with me. And I went, Okay, I'll get it, because she's literally having trouble standing up and moving around everything. So I said, you know, where's your bag? She carries this little bag in her purse. Has her meter and Chivo hypo pen in it, stuff like that. Let me get my text out so I can tell you what she said, Oh, where is your green bag? I don't know. Man, what I got from that was, dude, I'm sick, like, you know, and just because you have diabetes doesn't mean you don't get sick and have that feeling of, like, I don't want to do this. Yeah, right, she's gonna be okay. There will be a day where you're not involved in Charlie's life, by the way, I can't, oh,
Jesse 57:33
yeah. I mean, my brother, you know, he takes care of himself when he's sick and and stuff like that. But I think it's always helpful to have extra eyes, you know. And you know, like he has his wife who follows Him. But you
Scott Benner 57:46
also alluded to the fact that he maybe could be helping himself more than he is, right? No,
Jesse 57:51
he has great management, but he has been diabetic for so long that he's like, I know all there is to know. I know my body. Like, I don't need to know anymore. He's like, I got this. He's like, that, that Russian guy who was shooting at the Olympics. He's like, walking out there with nothing.
Scott Benner 58:09
Is he really having those outcomes?
Jesse 58:11
It's been an interesting last two years of diabetes for my brother, because he was diagnosed also with type two as well. So he's now on a GLP, and it has taken over a year to find the right one that works for him and dosage and stuff like that. So, you know, he did a whole year of like, titrating a certain GLP that wasn't doing anything. And then he finally, you know, I did convince him to, hey, maybe you need a different endocrinologist who will listen to you. And so he switched endocrinologists, and that endocrinologist put him on a different GLP, and now he's doing great. His insulin needs have dropped dramatically. Blood sugar is now chilling around closer to 75 to 120 he has hardly any highs.
Scott Benner 59:01
That's awesome. Oh, I'm glad, yeah. Hey, listen, uh, not that this means anything, but Turkish, oh yeah, yeah, that's right, yeah. And this will be six months later. So you're referring to the guy in the whatever they using, like, air, air, like handguns, right? He just rolls up, like everyone else has, like, protective wear, protective wear on all this stuff. He just kind of rolls up and pulls his gun out, like Dirty Harry, and he's like, get me a medal.
Jesse 59:28
That was the best thing ever. There's been a lot, there's been a lot of good stuff from the Olympics. You
Scott Benner 59:33
know, who I feel badly for? The female Australia break dancer. I actually, I'm starting to feel bad for her, actually, yeah,
Jesse 59:40
no, she's my favorite. They knew what they were doing. They're like, we're gonna send this 40 something year old professor to be a break dancer for our country.
Scott Benner 59:50
I think they dropped it from the Olympics already, by the way. Oh yeah, they did. Yeah, yeah. They were like, we're not doing this again. Sorry.
Jesse 59:56
That's a bummer, because it made for really good TV. I mean. And I was like, wow, I can watch dance offs, you know,
Scott Benner 1:00:04
I love she went home and did it again. Like, out on the street, they did a video of her and put it online. I was like, oh my god, stop doing this.
Jesse 1:00:13
Like, maybe she's my favorite. Maybe
Scott Benner 1:00:15
you're making sense. Maybe they're all in on the joke, you know what I mean? Because, yeah, little weird hand motions and body stylings. I'm like, You shouldn't be doing this. This is this looks like me doing this. Like, what do you I
Jesse 1:00:27
know I'm definitely gonna take that some of her moves to my son's middle school dance when I chaperone it and see, see if I can embarrass him a little bit. I
Scott Benner 1:00:35
like when she lays down to spin, she almost stops moving break the about that is she looks like she's gonna break her hip. Very ridiculous. Anyway. Is there anything we haven't talked about that we should have not
Jesse 1:00:49
that I can think of. What was the other subject I told you about?
Scott Benner 1:00:53
You blended advocating for yourself and not letting school nurses tell you what to do, and you about passing. So you kind of blended them together when you started talking,
Jesse 1:01:02
yeah. I was Yeah, yeah. I think I think we covered it. Let me
Scott Benner 1:01:06
just ask you a couple other questions then real quick, because we know your brother has type one, but do you have any other autoimmune things? Or does your husband or people on either side of your families,
Jesse 1:01:15
I have Hashimotos so and then I did tell you, I was one of five. So four out of five of us have hypothyroidism, okay? And both my parents hypothyroidism, wow, yeah, those are, I know. I was just talking to my oldest brother the other day, and he was like, I am the only one without hypothyroidism. This is, you know, I'm just watching it, you know.
Scott Benner 1:01:39
He's like, it's coming. I think, you know, I told him, but he's,
Jesse 1:01:42
you know, he's eight years older than me, and I'm like, Man, I bet you have it. And you just don't know.
Scott Benner 1:01:47
I was gonna say, why would he not take a look he has? But I did
Jesse 1:01:51
tell him. I said, you need to, you know? He said he's just been asking his getting blood work done at his primary care physician's office. And I said they're just testing your TSH levels. You need to go in and they're
Scott Benner 1:02:04
going to say, like, up to an eight is okay, or something like that, correct, yeah. And so
Jesse 1:02:08
I did. I was explaining that to him the other day about, you know, you need to check your your T for your t3 and then you need to see how, like, where your TSH levels are, because, you know, you could be there. They're within range. You know, the normal range is such a broad range, yeah, and I can have my TSH be within range and not feel optimally, right? So does he have symptoms? That could be the problem for you as well. And then, if they're not checking your T for your free T for, they're not tech checking those things, yeah, you're not getting the full picture. Yeah, you want
Scott Benner 1:02:43
a full panel for I have a family friend I'm trying to help now, and she's younger, so she's, you know, running into doctors who aren't helping her, and she's not real good at, you know, arguing back yet, kind of walking her through it. But, you know, she's five six hypothyroid symptoms, and they're changing her life, like, significantly, you know, her TSH, comes back at like, over five, and the doctor's like, that's normal. And I was like, That's not normal, right? And she said, Oh, she retested it and it came back at 2.5 and I'm like, Yeah, that's still not normal, right? And then they tested it again, it was 4.4 and I was like, Yeah, you need, like, thyroid medication, right? And the doctor is like, No, you don't. This is all very normal. Like, it, I don't know what world you think this is normal. Like, I know.
Jesse 1:03:29
I keep telling, I told my brother, Hey, you gotta this other one. I was like, Hey, you gotta go see an endocrinologist. If you're I'm not hating on the medical community at all. He doesn't specialize in that. You know, your primary care physician does not specialize in this, so you need to go see somebody who can look at a thyroid panel. Know what labs to pull right and then be thoughtful, actually, yeah, know what they're talking about, because they're focused on
Scott Benner 1:03:54
we need these doctors to be more specific about these tests, because we need them to do more like I'm telling you, I'm going to be right about this in the next handful of years, as GLP medications become available for type ones and they become available in vials, we're going to need doctors to tell you, Hey, listen, you know, back in the day when this all started, you know, the lowest dose of this you could get was 2.5 milligrams, but that's too much for you. Like, you know, like, we need you to do a milligram. And I don't want you to do it every seven days. I want you to do it every, I don't know, five days, 10 days, whatever ends up optimally working for you. But if you look at how little doctors are valuable in dosing your insulin, then you're going to realize how invaluable most of them are going to be with your thyroid medication and then with this, I mean, this GLP thing, like Arden has insane benefits from it, but the lowest dose is too much for her, right? So we're literally in the middle of figuring all of that out. We and I have a doc. I think I know what to do, but we're waiting a few days for her doctor's appointment where we're going to go sit down with her doctor and discuss all this. We're. Because she needs it, but not that much. She lost too much weight, and she had too, too hard of a time eating. And so where most people just go, oh, well, I, you know, it didn't work. I because I can't eat. I'm like, no, no, it nine out of the 10 things we wanted out of this worked great. One of the things didn't work, like, let's right, change the dose, yeah, you know. And luckily, we have a doctor who will be like, yeah, that's sensible. Let's figure that out, right?
Jesse 1:05:27
Yeah, it's hard to find, you know, I feel like you have to find the right doctor who's willing to work with you. Like I said earlier, our endo works with us, you know, and not, you know, we're on the same team, instead of, you know, fighting against us. And I've had endos who were like, you know, I know more than you. And there's been times where I'm like, No, I'm no more than you when it comes to this.
Scott Benner 1:05:47
So why does it matter? Like, let's just work together and figure it out.
Jesse 1:05:50
Yeah, yeah. I just remember arguing with my you know, we're arguing about technology and stuff, and I'm like, No, that's not how this insulin pump work. Also,
Scott Benner 1:05:57
forget doctors. Good luck finding people that can think through complex things in any walk of life, not just not just your doctor, you know what? I mean, we have a greater expectation for them, but they're just people. It's not right. I mean, so anyway, right?
Jesse 1:06:10
And you know, I feel like they don't get the pump draining that they need. You know, they pass that off to their diabetes educators in their office if they have them. But I feel like my endocrinologist should be, endocrinologist should be knowledgeable about the pump that is being, you know, my daughter's using, and my new one is, it
Scott Benner 1:06:27
doesn't seem crazy to ask for that, right, right? Yeah, could you know how she's great? Would you mind taking 15 minutes and teaching yourself this? Yeah,
Jesse 1:06:37
we're actually our next pump is going to be the Moby. I'm super excited. Oh yeah, we tried to get the Moby our our endo told us, like, six months ago, she's like, Oh, okay, they're tandems rolling out this new thing this summer, where, if you have the x2 and you want to upgrade to the Moby, they will do that for you at no charge. And then, you know, the following year, they'll, you get charged for it or whatever. Oh, some upgrade program, something like that. Well, I called and I submitted the forms for it, and then they called me back, and they're like, oh, you can't do that. You have to be 12 months from your you have to have at least 12 months left of your warranty to upgrade. Okay? And you have 11 months. So sorry, you're denied. I'm like,
Scott Benner 1:07:24
Are you serious? Those are all making sense. That's fine, yeah.
Jesse 1:07:27
Like, okay, that was, uh, took you three weeks to get process the paperwork, so let's backdate it.
Scott Benner 1:07:33
Well, let's just take four more weeks and give it to
Jesse 1:07:35
me. Yeah, I know. So yeah, you'll
Scott Benner 1:07:39
end up with it eventually. Yeah, she's
Jesse 1:07:41
gonna get it in the new year. So we're, I'm super excited. It's the same system as the x2
Scott Benner 1:07:47
Yeah, it's the same algorithm. Yeah, exactly. Yeah. No, that's exciting. Again, I'm I anytime people get things that work good for them, I think that's, I think having those choices is a minimum of what we should be asking for. So, right, right. Absolutely fantastic. All right. Well, Jesse, you were great. I appreciate you doing this with me. Thank you very much. Thank you. It was so it was so fun. Did you have a good time?
Jesse 1:08:09
Yeah, yeah. I loved it. And I feel like I could talk diabetes forever. And I feel like the first, I don't know if you remember this the first time I ever talked to you. You talked to me on the phone shortly after my daughter was diagnosed. I don't know if there's no way you remember this, but I remember this, and she had just been diagnosed, and I had reached out to you, and you were super kind, and you were like, can I just call you? It'll make more sense if I call you and you talk to me on the phone. And that's when I first realized too, because her her Endo, at the time, had said, Oh, she I want you to treat her blood sugar if it's 100 or below, yeah. And when I talk to you, you're like, 100 is fine. And I was like, Oh, it is fine.
Scott Benner 1:08:53
Yeah, yeah.
Jesse 1:08:55
I don't know. I just remember it. And you were super, you're super kind. Well, first
Scott Benner 1:08:59
of all, I'm fantastic. And I think everyone knows that you didn't have to bring it up, but I don't remember. I apologize for not remembering, but I think what I hear you say is that if everybody could just talk to me for a half an hour when they were diagnosed, they'd be okay.
Jesse 1:09:11
Yep, yep. You put me on the right track, and it was great. And I'm super thankful for your podcast because, and I tell everybody I know that's been diagnosed, like you've got to just listen to this, like I could talk your ear off, but just listen to this will be easier. Yeah,
Scott Benner 1:09:25
no, I appreciate that very much. And it's funny. I was trying to be funny, but at the same time, I do think that I have it down to a brisk 40 minutes that I can, like, put you on the right path. Yeah, I
Jesse 1:09:37
honestly, I think you and I talked on the phone for 20 minutes, if that, and I was like, I feel way better about this
Scott Benner 1:09:46
situation. Good, good. I'm glad. All right, that's excellent. Well, thanks so much for doing this with me. Yeah, thank you. Okay, cool. Hold on one second for me,
I'd like to thank the ever. Sense 365 for sponsoring this episode of The Juicebox Podcast, and remind you that if you want the only sensor that gets inserted once a year and not every 14 days, you want the ever since CGM, ever since cgm.com/juice, box, one year, one CGM, guys, you want to go for a walk with touch by type one in Orlando, you can do it and you can have a great time. Meet a lot of wonderful people touched by type one.org, go to the programs tab, click on Steps to a cure, and get yourself registered right now for the beautiful walk that's coming up on March 8 in Orlando. Touched by type one.org, earlier you heard me talking about blue circle health, the free virtual type one diabetes care, education and support program for adults. And I know it sounds too good to be true, but I swear it's real. Thanks to funding from a big T 1d philanthropy group, blue circle health doesn't bill your insurance or charge you a cent. In other words, it's free. They can help you with things like carb counting, insurance navigation, diabetes technology, insulin adjustments, peer support, Prescription Assistance and much more. So, if you're tired of waiting nine months to get in with your endo or your educator, you can get an appointment with their team within one to two weeks. This program is showing what T 1d care can and should look like. Blue circle health is currently available in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. If you live in one of those states, go to bluecircle health.org to sign up today. The link is in the show notes, and please help me to spread the word blue circle health. Had to buy an ad because people don't believe that it's free, but it is. They're trying to give you free care if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. It's ready to go right now. And like I said, they're adding states so quickly in 2025 that you want to follow them on social media at Blue circle health, and you can also keep checking blue circle health.org to see when your free care is available to you. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast if you're living with type one diabetes, the after dark collection from the Juicebox Podcast is the only place to hear the stories that no one else talks about from drugs to depression, self harm, trauma, addiction and so much more. Go to Juicebox podcast.com up in the menu and click on after dark there, you'll see a full list of all of the after dark episodes. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com, so.
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