#1557 Remy's Ma
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
When 18-month-old Remy started soaking through diapers and guzzling water, Kara had a hunch.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox Podcast.
Kara 0:13
Hi, my name is Kara. I'm in my early 30s.
Scott Benner 0:20
The podcast contains so many different series and collections of information that it can be difficult to find them in your traditional podcast app. Sometimes. That's why they're also collected at Juicebox podcast.com go up to the top, there's a menu right there. Click on series defining diabetes. Bold beginnings, the Pro Tip series, small sips, Omnipod, five ask Scott and Jenny, mental wellness, fat and protein, defining, thyroid, after dark, diabetes, variables, Grand Rounds, cold, wind, pregnancy, type two, diabetes, GLP, meds, the math behind diabetes, diabetes myths and so much more, you have to go check it out. It's all there and waiting for you, and it's absolutely free. Juicebox podcast.com, 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. Today's podcast is sponsored by us Med, US med.com/juicebox, you can get your diabetes supplies from the same place that we do. And I'm talking about Dexcom, libre, Omnipod, tandem, and so much more us, med.com/juicebox, or call 888-721-1514, this episode of The Juicebox Podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox of my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox, 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. Hi, my name is Kara, Kara. How would Kara be spelled?
Speaker 1 2:33
So I see it spelled the same way that I spell my name, C, A, R, A, and so what I do is I tell people it rhymes with Sarah, and that tends to help. It really is based on like, if they knew someone who pronounced it Kara, that's kind of what stuck in their head. If they are familiar with pronouncing it as Kara, that's easier for
Scott Benner 2:50
them. I see So Kara it is. I can do it all right. I care a lot about you being happy Kara, so I make sure I do that correctly.
Speaker 1 3:00
There you go. You have type one. I do not my son. Does your son? Does you look incredibly young? Oh, I, I'm in my early 30s. No,
Scott Benner 3:09
that's crazy. I honestly thought, like I I saw the description for who I was talking to today, and then you popped on camera while we were working out your technical issues. And I thought, Oh, I might have this wrong. Good for you. Oh, thanks. Do people think you look young? Generally, I
Speaker 1 3:27
don't know. I don't know if I've heard that in a while. Okay, maybe the lighting is doing something for me
Scott Benner 3:33
today. Whatever it's doing, take it home with you. Just walk around. Say to people when you want to visit me, we do it right here. This is where I look amazing. Anyway, all right, so how many kids do you have? Just
Unknown Speaker 3:47
one,
Unknown Speaker 3:48
awesome. How old he is? Almost five.
Scott Benner 3:51
Five. Wow. And how old was he when he was diagnosed? Remy Rennie. Oh, like, like, Rennie Harlan, like, the director, like,
Speaker 1 3:59
like, like, some people ask the short for Remington, but R, E, M, y, Remy,
Scott Benner 4:06
like the rat in that movie?
Speaker 1 4:07
Yes, I get that question sometimes like, oh, you named him after the rat in Ratatouille? No, we did not.
Scott Benner 4:13
Oh, Kara, Kara. I would never think you named your kid after a rat in a Pixar
Speaker 1 4:22
film? It depends. It depends on who I'm talking to. Like I was talking to some college students, and they're like, wait after ratatouille. And I was like, Absolutely not. But I
Scott Benner 4:30
appreciate the question. My wife says to me this morning, she goes, Hey, I got put on a committee to help name a drug. And I was like, Hey, hold on a second. I walked over to her. I was super serious. I said, Is there any chance we could call it Scotty b She, she goes, I don't think I'm gonna have that kind of pull on the committee. And I was like, gotcha worth a try. Yeah. I mean, I don't even know. Like, can you imagine, what if it ended up being bad? Like, and I was, and it was on the news, they're like, Scotty Billy kills it. There 50,000 people today. All right, so Remy yes is diagnosed at what age? 18 months old. Oh, gosh, you got me beat there. Yeah, he was little. Wow. How did you figure it out?
Speaker 1 5:13
Okay, yeah. So that fall, he was sick, you know, as babies sometimes are when they're in daycare, and he had different viruses, including pneumonia. And then I, like, noticed that he was really thirsty, he was peeing through diapers. And I was like, Huh? I think that has something to do with diabetes. And so, you know, I Google, and I'm like, okay, he has a Well Child appointment coming up soon. Like, I'll just ask his doctor at that appointment. And so this was, like, December 2021 went to the appointment. My spouse, Remy, his dad, was also there, and the pediatrician was like, Oh, he's just fighting another virus. I'm like, Okay, I'm not gonna panic like he I'm gonna trust what the doctor is is telling us, like, we'll just see how this goes. So then a couple weeks later, he got really sick. We take him to the ER, he gets diagnosed with COVID, and they test for, like, other things too. They give him a steroid, they send us home. They're like, okay, he should be so you should be seeing improvement, like, in the next 12 hours or so. Cool, we go home the next day, he is definitely not better. I'm thinking that he's worse. So we bring him back to the ER, and then he is diagnosed with type one
Scott Benner 6:25
Carrie. You break up once in a while. So I'm just gonna, like, I'm gonna live through it, and the editor is gonna seam it back together. Because we're not losing any of your words. There's just a gap sometimes. So, oh, okay, good to know. So if you pause at the end of a thought, and I'm not there right away, give me a second. Okay, gotcha. Okay, all right. Wow. So you figured out, how did you know, like, what do you do for a living? Or are there people in your family with diabetes that you were just like, oh, that sounds like diabetes to me. Yeah,
Speaker 1 6:51
great question. I don't know exactly. Okay, so I'm a social worker, but not like in the medical field, and I do have some family members with diabetes, but it wasn't like I didn't, I don't feel like I was super educated on diabetes prior to my son's diagnosis. It was just kind of like, somewhere, you know that, like, knowledge is in your brain. You're like, read something once, and you're like, oh, okay, I think these are, like, connected symptoms. And, you know, I googled and was like, Yeah, this. Like, this could be a
Scott Benner 7:16
possibility. That's crazy. You were just like, Oh, I think I know this. Yeah, I don't. I
Speaker 1 7:21
like to read a lot, so I don't know, like, you know where that thought came from? Yeah,
Scott Benner 7:24
hey. Last odd question about Remy his name, do people since you're Remy his mom, Do people ever call you Remy Ma? No, they really should, don't you think?
Speaker 1 7:35
No, well, like his classmates call me Remy his mom because they see me at drop off. But not
Scott Benner 7:40
like adults. Adults don't do that. No, huh,
Unknown Speaker 7:44
no, not to my face. Anyway,
Scott Benner 7:46
she got eight years for shooting somebody. Oh, this was in 2008 I guess she's out by now. Grammy nominated rapper Remy Ma was sentenced to eight years in prison on Tuesday for shooting and wounding an acquaintance after discovering money was missing from her purse. Hey, you know what? Don't take money from people. Lesson learned, yeah, they might shoot you with a handgun they have in their purse. Think a little bit full generation of people, Kara, that aren't aren't properly scared. You know what? I mean, what a shame. We've nerfed the whole world for everybody now they think they can just steal Remy took care of it. She's like, bang, no, that's my money. Give it back eight years. I wonder how much money it was. I bet you not eight years worth of money. Probably not. Anyway, you're a Remy Ma from now on, and we're gonna move forward. I was just like, oh my god, this is gonna be a great episode title.
Unknown Speaker 8:36
It will be. I can't wait to see what you come up with.
Scott Benner 8:39
Yeah, I'm piecing it together already. Well, okay, all right, so you pulled diabetes out of your let's
Speaker 1 8:43
say, I mean, kind of but no one believed me right away. So
Speaker 2 8:47
oh yeah, oh people were like, Oh no, no, no, yeah. So his pediatrician
Speaker 1 8:51
was like, Nope. It's, you know, it's just a virus, you know, we took him to the yard. So I think the fact that, like, when he got really sick and we took him to the yard that first time, I think the COVID diagnosis, like, I think those symptoms were masking, you know, the dka, because he was in DKA, he was in really, really bad shape, wow. So I think, I think that made that tricky for them, you know, the first ER visit,
Scott Benner 9:12
did he come close to a real, like, significant medical issue, not that this isn't, yeah,
Speaker 1 9:17
I think so, right, yeah. So they were, they were pretty concerned about, like, his mental state. They're like, Oh, mom, like, good instincts, like, good thing that you brought him back. I'm like, Yeah, I think he was dying, and he kind of was, they were talking about, like, intubating him. They were really closely monitoring, like, I said, his mental status, like the COVID and the DPA, like, you know, His breathing was really tricky. Thankfully, they didn't have to intubate him. Like, you know, he pulled through. Here we are, yeah, and we were released from the hospital on Christmas eve of December 2021
Scott Benner 9:48
Oh, Merry Christmas too. Yeah, it was, it was a
Unknown Speaker 9:50
rough Christmas, for sure.
Scott Benner 9:52
Nothing good for you in this like your husband said, No, it's not that. And then later, you were like, Oh, I told you I was right about that. Any Did you get any of that at all? Yeah. Hmm,
Speaker 1 10:00
no, not my husband. I mean, we, we don't see that pediatrician any longer. We weren't really a fan of him to begin with. We didn't feel like he was a good listener even before the diabetes thing. So we did switch to a different pediatrician, and we really like her. We also love our like and he, you've actually interviewed him. He has type one himself. And are the educator we saw the CDE, her son has diabetes, and so, like, the care we received in the children's hospital was excellent, even if getting to that diagnosis was like a rough process in some ways.
Scott Benner 10:37
Shout your PD, your endo out. I had him on. It. He was awesome. I thought,
Speaker 1 10:41
yeah. Nadia Kasim Nader, I always say his name incorrectly. Sorry,
Unknown Speaker 10:46
really, really,
Scott Benner 10:52
oh, you say people's names wrong. Do you Cara, Cara, whatever,
Unknown Speaker 10:58
sometimes I do give big
Scott Benner 10:59
opinions about your name being pronounced correctly.
Speaker 1 11:02
No, I really don't. I feel like I offer people a lot of grace. I just try to, you know, give people a heads up if they if they care about pronouncing it
Scott Benner 11:09
correctly. Oh, you were so lovely, actually, before you started, you were like, I just want to, want you to know. And you're like, I won't even if you say it wrong, I'll never even bring it up. And I was like, No, bring it up if I say it wrong. Well, Dr Kazem was awesome. Like, his episode is really, really wicked good. Like, and I'm not even from Boston, and I just said that. So, you know, you said you had a pediatrician who didn't really listen. You had one that that does. Now, what do you think that that brings to you? I
Speaker 1 11:34
think it's so critical for healthcare providers and anyone in the helping profession like profession, to make sure their patients are heard. Yeah, I think that's just really important in general. Like, I know from personal experience, like, right? People want to be heard.
Scott Benner 11:49
Yeah, no. I just wondered if you had, like, an actual like, hey, this happened before, and now we're talking to somebody who's a little more locked in. And, I mean, is it your comfort? Like, do you just you feel more heard, and what does that bring to you when you have that feeling, you know what I
Speaker 1 12:06
mean? Yeah. I mean, so, like, our current, I mean, pre nutrition, she's great. And it's not that she's really involved in Ronnie's, like, diabetes care, yeah, I don't know if I have, like, much more to say about just the importance of being heard it, I think it makes for better relationships in general, but especially with a healthcare provider, right? You're in a vulnerable position. You want to feel like your voice matters and that you have something to add to the conversation, and instead of being, you know, talked over or dismissed,
Scott Benner 12:36
yeah, no, I hear okay, all right. What makes you like I don't know, pick up a keyboard and say I'd like to be on a podcast. Today's episode is sponsored by a long term CGM that's going to help you to stay on top of your glucose readings the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGM, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox, to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year. At my link, you'll find those details and can learn about eligibility ever since cgm.com/juicebox check it out. Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a 1c on this podcast, did you know that the Omnipod five was shown to lower a 1c that's right. Omnipod five is a tube, free automated insulin delivery system, and it was shown to significantly improve a 1c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod every day since she was four. It has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod five for yourself or your family, use my link now to get started omnipod.com/juicebox get that free. Omnipod five star kit today. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox,
Speaker 1 14:33
and listening, you know, for a while, like, we found out about you pretty early on our CDE, let us know about the podcast when we're in the hospital, and I joined the Facebook group, I think, like, while we were maybe still in the hospital, or soon after, and then you had posted something in the group about, like, I don't understand. And I had listened to, maybe, I think I listened to a few of those episodes. But anyway, and so my question was, I don't understand why doctors. Don't do a finger poke when patients are presenting with symptoms of type one, especially when there's a family history, like there is in my family, so that I am someone who really cares a lot about prevention, and so that I know the answer to this question, but I also still feel like we can do better in general, for our kids and for adults.
Scott Benner 15:21
So this is a thing that that I find newly diagnosed parents seem to feel very, very strongly about this, okay, like, why doesn't everybody just do a finger pick? You know, at every, every doctor's appointment, when something like this comes up, and I wonder if that comes from, like, you just having the experience where you're like, you realize now, like, oh, we were in there, somebody would have just done this, then the rest of that time, that gap wouldn't have been there, I guess. Like, what was the gap of time between that first visit and when you actually got a diagnosis? And, you know, first, how long was that?
Speaker 1 15:58
Yeah, so, you know that, well, child appointment, and then the actual like, diagnosis in the emergency department wasn't that long. It was probably only about a month. But like, you know, looking back at pictures and looking at how he was, you know, he was so sick that fall, so I don't know exactly, I can't tell you exactly, like, when his symptoms started, so it was an incredibly long period of time, but I do feel like it would have been maybe possible to avoid DKA I had at that well child appointment, the doctor or whoever did that finger poke. And so it's not like, you know, the diagnosis still would have been there, but we would have avoided conversations about intubating our 18 month old child, you know, right before Christmas Eve, which
Scott Benner 16:42
is a thing you probably still think about
Unknown Speaker 16:44
now, yeah, sometimes. I
Scott Benner 16:45
mean, clearly I'm talking about it right now. Yeah, no, but I mean, seriously, like, that's a it's your first kid, right? You don't even know what you're it's 18 months. You're just, you don't even know what you're doing yet. You know what I mean. And then this pops up exactly, yeah, you said you had diabetes in your family. Where is that?
Speaker 1 17:01
Yes, so technically, it's on both sides. So on my husband's side, his maternal grandfather had type one. I never met him. He died before we were together, so I don't know much about that, but on my side, so my dad has type two currently in remission. So his brother, my uncle, who has since deceased, probably had type one or Lata, and he died due to diabetes complications. And my grandfather, so my dad's dad and my uncle's dad, he also probably had type one, or, you know, Lata, he died due to multiple health complications, including diabetes. So, yeah, it definitely runs in the
Scott Benner 17:46
family. Jeez, it does. How about other autoimmune issues, like thyroid or celiac or anything like that?
Speaker 1 17:51
No, not that I know of. Yeah, no, I have an autoimmune disease, but that was diagnosed like in the last year ish, what is yours? It's this kind of random kidney thing. It's called AGI nephropathy. It's more common in like, young men, and they don't really understand why I have it. There's not a lot of information about it. So technically, I'm in stage one
Scott Benner 18:14
of kidney disease. What's I was gonna say? What's the impact on your life right now?
Speaker 1 18:17
None, right now. So I had, you know, I was on a steroid treatment and lots of other medication, which took care of the problem pretty quickly. And so I'm also, I'm technically in remission, so it's something that I follow up with my kidney doctor, my nephrologist, on yearly basis.
Scott Benner 18:33
Is there a thought that you can manage it and it won't become more of an issue?
Speaker 1 18:37
Yes, that is the thoughts and the hope, you know, on the one end of the spectrum, like, you know, severe would be needing dialysis one day, but I've responded really well to treatment, and the hope is to keep in remission. And, you know, if symptoms come back, to just continue, like treating it, and hopefully it continues to respond. Well,
Scott Benner 18:54
it's awesome that they found How did they find it? I was having a lot of
Speaker 1 18:57
swelling, which wasn't going away, and so I asked my primary care doctor about it, and she listened right away and got on it. And had, I had some testing done, they found, you know, protein in my urine, referred me to a nephrologist right away and had more lab work. I had a kidney biopsy, yeah, geez. And so that's then when I got the actual, like, diagnosis.
Scott Benner 19:20
Are you guys thinking, I've had other kids or no? Diabetes comes with a lot of things to remember, so it's nice when someone takes something off of your plate. US med has done that for us. When it's time for Arden supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden. This is your friendly reorder email from us. Med. You open up the email, it's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one. Us. Med has done that for us. An email arrives. We click on a link, and the next thing you know, your products are at the front door. You. That simple, us, med.com/juicebox, or call, 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put the stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide over 800 private insurers, and all you have to do to get started is call 888-721-1514. Or go to my link, usmed.com/juicebox, using that number or my link helps to support the production of the Juicebox Podcast.
Speaker 1 20:48
That is a great question. Um, yes, I would like to my partner needs some more time to consider.
Scott Benner 20:55
Is everyone on board? Yeah, I
Speaker 1 20:57
don't know if that's something we want to spend a lot of time talking
Scott Benner 21:00
about, because there's a guy holding half the cards in this deck. And, yeah,
Speaker 1 21:04
that's how it works. And, you know, and friend Remy was initially diagnosed, both he and I were like, oh, like, I think we're one and done, but some time has passed and I am more open to expanding our family.
Unknown Speaker 21:14
Yeah,
Scott Benner 21:16
interesting. What do you think, without digging too deep, just high level is the hold up on the other side, the diabetes and the health stuff,
Speaker 1 21:25
yeah, that is, that is part of it, for sure, okay? And just in general, like, you know, Parenting is hard, so, oh yeah, lots of factors. Can I just tell you,
Scott Benner 21:35
it was maybe three nights ago now, Saturday, whenever Saturday was Tuesday, already, I feel like it's like Three nights ago, I gave my wife a hug in the kitchen, and I whispered in her very gently. If I would have known all this, I never would have spoken to you. I just would have stared through you and kept going. I didn't know all this was gonna happen. You know what I mean? I do. I do know what you mean. Yes, it's like, I was like, I I just had this moment a couple of days before where I was talking. I was, you know, we still talk, but we've been married for a while, so it's not necessary all the time. But we were talking, and I said, I don't feel this is going to sound crazy, because I'm a pretty hard worker. I was like, I don't feel like I'm working hard enough. And she's like, What are you talking about? It's like, I don't have a lot of ideas and things I want to do when I just don't feel like I'm doing them quickly enough, and I'd like to do that. I feel like I see a space here to do something like that, and I'm really going to get to it. And the next like, it couldn't have been four hours later, like, our son comes home and says something, and I was like, oh, here goes the next five months of my life, there you go. And then it's not like, 48 hours later, Arden wakes up in the morning. She goes, I'm sick. I'm like, oh, okay, all right.
Unknown Speaker 22:50
Like, okay, there's always something. It never
Scott Benner 22:53
stops. It's never and that people keep saying, like, I heard somebody told me today. They're like, oh. They say when they go away, like when they get married, it gets easier. I'm like, Well, how old am I going to be at that point? First of all? But I don't think it will. I just think it'll change.
Speaker 1 23:06
It just changes. Yeah, I've heard someone say, you know, when they're little, like their problems are little or, you know, like we're trying to feed them and learn ABCs and things. And then as they grow, their problems become more complicated and more expensive and sometimes work time consuming. So, yeah, even when they're adults, if you're still involved in their life, like that, takes time. This is
Scott Benner 23:27
my point. I just, I actually, I was like, I don't even think we should be trying to save for like, retirement at this point. I was like, we should just, like, light everything on fire, go out and blaze the glory and be done, right? Yeah, just enjoy ourselves while we can. I really, because I don't see how I'm going to live to ad to begin with
Speaker 1 23:42
that. Yeah. I told some students the other day that aging is a privilege, you know, in some ways, and they were like, what? Like,
Scott Benner 23:50
yeah, it just means you didn't die. It's awesome. Yeah, you said a social worker in what setting?
Speaker 1 23:56
Yeah, so that's, that's a good question. I am a macro social worker, which means, like, I don't practice therapy, I don't do direct work. I used to, I've done direct services in the past, but I work for a nonprofit that provides. Well, I work, I work on the prevention team. So primarily, what Children's Advocacy centers do is they help kids who have been sexually abused. That's the clinical side of things. I'm on the prevention side, so I provide education in the community to both children about body safety and to adults like recognizing signs, but also like having good policies and procedures and their organizations and knowing how to report something if they have a concern.
Scott Benner 24:37
Wow, that's awesome work. How'd you get involved in that.
Speaker 1 24:41
So prior to doing this, so I started off, like, right out of grad school, I was a foster care worker, and that was not the job for me. So I, like I said, I'm very passionate about prevention. That's always been something I've been interested in. And so I learned about this prevention position at the Children's Advocacy Center, and that felt like a great fit. So I've been doing that. About five years.
Scott Benner 25:01
That's awesome. Good for you. Is this a more prevalent problem than I would imagine it
Speaker 1 25:07
is? We could, Scott, we could dedicate a whole podcast episode to that, but I know that's not why I'm here, so I won't use this opportunity for my soapbox. But it is, yeah, it's much more prevalent. The kind of like National statistic is one in 10 happens a lot more than I get it. That's a stigmatized topic, and so that's kind of what I'm passionate about, is de stigmatizing conversations around it, so that people can get the help that they need, rather than not telling and then not getting help.
Scott Benner 25:34
One in 10, somebody they know, a lot of people. Yeah. Is it somebody they know, generally somebody they don't know. Does it happen in all kinds of communities, like even ones where you'd think like, oh, white picket fence, everything's good here.
Speaker 1 25:48
Yes. So it happens in every community, and it's often someone they know, because that's someone that has maybe built some rapport with them. So it could be someone in their family, or it could be someone close to the family, or, you know, someone else in the community who, again, like it's not that only the child has trusted this person, but also the family or caregivers have as well, and then that person gets access to the child.
Scott Benner 26:13
So for every 50 people I know, how many of them are psychopaths, what do you
Speaker 1 26:16
think? Oh, man, I am not qualified to talk about that. No, you're
Scott Benner 26:21
not qualified to talk about it, but you might think about it, right, and just get the help I need, right? Yeah, no, but I'm seriously though, when you see this side of the world, when you see that side of the world, is it difficult not to look into a crowd of people and think there's a terrible person in this group? Like, statistically speaking,
Speaker 1 26:38
a great question. So, yeah, once you're, I think, in the field of social work, and especially like the side of child welfare and the work that I do, you definitely see the world differently. I don't like think about terms, like, of bad people, but I think about, like, you know, everyone has probably faced something hard, and not everyone's talking about the hard things they have faced. So it definitely, I think, makes you just more empathetic and aware and just not afraid to talk about hard topics like this
Scott Benner 27:05
I can imagine. All right, so this, yeah, poor Remy, 18 months old. I mean, honestly, Arden was two years old, and I thought, Oh, how you know, but 18 months how much did he even weigh at that point? Oh,
Speaker 1 27:17
man, well, so he definitely had lost some weight with the undiagnosed diabetes at the time, I don't remember, I'd have to look, but he didn't walk for two weeks afterwards. That's something that, like, sticks out in our minds sometimes, like something I don't think about very often. But, you know, he was so ill, so like, he had COVID and this diabetes diagnosis at the same time. So he was really, really sick, really tired. He was little. He was still nursing at the time too. I remember, like, Finally they let me, you know, he had, like, less tubes connected to him, and so I, like, climbed up into his hospital bed, and the nurse walks in, and we're nursing, and she's like, Oh my gosh, I don't what are we supposed to do about that? Like, how do we dose? Oh, the nurse didn't know. I don't know. Like, it's not his primary source of nutrition. But anyway, so it's not something that we,
Scott Benner 27:59
like, worried about. Take a look at this thing. How many carbs you think are in it? I don't know. It's not a thing you've been thinking about ever in your life, either. Oh, no. How long did it take you to figure out a plan and a pattern for all that, for, like, nursing or, like, I mean, just in general, having an 18 month old, newly diagnosed kid. Like, I mean, is there a let's start at the beginning. Do you get a CGM? Do you get a pump? Like, how do you figure out, like, carb counting for nursing? Like, the whole thing,
Speaker 1 28:26
yeah, yeah. So I didn't, I didn't worry about carb counting for nursing, just because, like, it wasn't really, like, I don't think he was getting very much, like, it wasn't pumping anymore, so more for comfort. So I really did not worry about that. But I know other people who you know early on diagnoses were trying to figure that stuff out. But yeah, so he we did get a CGM in the hospital, which I'm very grateful for. Walked out, you know, with the Dexcom on his body. We started out MDI, but we were told in the hospital, but because of, I think, his age, we were, you know, they were pushing for us to get an automated insulin pump pretty quickly, which we did. It only took us, like, a couple of months of being MDI before we're able to get the Omnipod dash. He's now in the five so, yeah, pretty early on.
Scott Benner 29:08
And so you were dosing from a pump really early. What did a Bolus look like for a meal? How much insulin?
Speaker 1 29:13
Oh, man. I mean, it was, it was small, for sure. And we were more strict on carbs, I think, in the beginning, than we are now. So yeah, getting really little amounts, and that was kind of part of the push for the pump, was that you could do smaller amounts more easily, right? Than trying to draw up a Bolus with a needle. It could be more precise. So yeah, he was having pretty small amounts of insulin.
Scott Benner 29:39
What do you mean? Careful about carbs. What were you how were you managing it? Yeah, we were
Speaker 1 29:43
so, you know, we were doing, like, carb free snacks, as they recommended. He was going to daycare, and so he did. He didn't go back right away. I think it was like, a couple weeks later he went back. And we were, you know, still learning ourselves, but trained them how to drop inside. In and we would send this little, like, rich sheet. And we still do that currently, we send a little written sheet with the carb counts for his snacks and meals. I don't remember the original question. Oh, careful with carbs. Yeah, we were trying to, I mean, we were still feeding him like bread and pasta, but I think we were just trying to be more mindful about having a balanced diet, you know, having like, protein and veggies at the same time.
Scott Benner 30:23
Has that changed now? Or did it just get easier when you learned how to bowl, a seat, better,
Speaker 1 30:29
a little bit of both? So he was only going to daycare a couple days a week, and they provided food, which is really cool, like that was included in the cost. So we would look at the menu ahead of time and kind of say like, Oh, they're serving cereal. He will not be eating cereal, you know, that kind of stuff. And now this year, especially, he is in preschool full time, and meals are also provided. So he eats the same meal as everyone else. If he wants it, I tell him what the menu is. He loves pizza, but then crust. So when they serve deep, deep dish pizza at school, he opts to not have that, which is fine by us, but he eats all the other I mean, you know, like, there's like 90 carbs in a meal, sometimes for lunch, so like, he's having that along with his classmates. Now we do send his own snacks, because, again, the snacks they serve are cereal. I love cereal, like, it's a great snack, right? It's not full of nutrition. He also doesn't like cereal, but anyway, so we do send his own snacks, just to keep it a little easier, stay more stable blood sugars. But he's eating lunch along with his classmates.
Scott Benner 31:30
Yeah? You're like, listen, I know it's not good for me, but who doesn't love a handful of apple juice? Yeah?
Unknown Speaker 31:35
Classic cereal. It's like comfort food.
Scott Benner 31:39
Yeah? You know, I just, you just made me realize something you said that there was this year that I I beat the school over the head until they made carb and calorie and all kinds of nutritional information available for everything that they served in the cafeteria. They still do it to this day at the school like I'm telling you, I made that happen, and then I never looked at it once. They because, you know, when I went on my crusade, I didn't know what I was doing yet, and by the time I figured out how to Bolus for things without knowing exactly what was in it all the time, I got the whole thing worked out with the school. So by the time was available, I don't think I ever looked at it once, yeah, but other people have it now, so I'm happy about that. But right, yeah, I just realized that the the poor woman who was like, shackled to me to get this accomplished, realized she'd probably come over here and hit me with a stick or something. My god, that's like, because she's like, we don't want to do like, they did not want to do it. Oh, I'm sure they did. No, they they weren't looking to be involved in this. But they got one day, got tired of me calling and going, how many cars been in today's lunch? And they'd be like, I'll put you through to the lady in the kitchen. I'm like, Okay. And then one day they were just like, maybe we could put this on the menu. I was like, that'd be awesome, yeah. And it wasn't that easy for some reason. My goodness, what have you seen from Remy growing up that would say to you that diabetes has made an impact and changed his life from where you thought his life was going to be, and where are there spots where you can't believe Nothing's different?
Speaker 1 33:14
Yeah, I think early on so like when you know we're in the hospital and they tell us a diagnosis, like I remember, and this is, like, my memory of it, right? So I'm not saying this is how the doctor was, but I remember one of the doctors being almost excited and probably more relieved that they figured out what was going on, right? Because he was in such bad shape. And so I remember being, like, kind of devastated, because I had a little bit of an understanding of what this diagnosis meant, because of my family members, like knowing, like the longevity of it is what was really hard for me to swallow at the beginning. This is something he would have forever. I'm over that now, I think for the most part,
Scott Benner 33:50
you had a situation where he was celebrating a thing that you thought killed your uncle, right?
Speaker 1 33:55
Right? Uncle is still alive at the time, but yes, and doing knowing the devastating consequences that, you know, improperly managed diabetes and have on one's
Scott Benner 34:04
body. And your uncle passed recently, in the last couple of years? Yeah, oh my gosh. How old was he? Like, in his 60s? Jeez, gosh, yeah, yeah. Well, I mean, guess maybe another story, yeah, no, I'm just saying, I'm, you know, I'm sorry he's gone, but probably good for you that it wasn't you know, before, because it would have hit you much harder. I would imagine. Yeah, I think so, yeah. Well, so, okay, so is there anything you can look at like, I see people worried all the time that this is going to change my kid's life, right? They're just not going to have the life that they that we expected, or we wanted or whatever, like that. But are you having that like, is that your experience is, Has it changed things drastically? Or do you think,
Speaker 1 34:44
no, I don't think so. You know, at first, like, yeah, just the longevity of it was something that was like, Oh, this is so sad that this is this burden that he will carry with him his whole life. But we, you know, since then, and his doctor did a good job too. So we live in a beach town. Yeah. And we love going to the beach and spending our time outside. And he was like, hey, these, the technology they have is waterproof, like this is not going to prevent him from living his life. And so, yeah, we haven't, you know, let that really impede his activities. I think it has made us think more critically. I mean, it has impacted like, babysitters, right? Like we don't have, we don't just choose anyone to be a babysitter. There's some extra training involved, as parents, know, and that's fine. That's something that we are fine to manage. Yeah, I don't think we're concerned about, like, stopping him, you know, from living a full, it's awesome, happy life. He does. He's really interested in outer space, and so he talks about wanting to be an astronaut. So I have not, you know, explained to him that, like, I'm not sure if that is an option for someone type one but hey, who knows? Maybe that will be fine one day to go to space with type one diabetes. They stuck
Scott Benner 35:49
those two people in that space station for they were they tell them they're gonna be up there for three days and nine months later, they're like, we'll come maybe, I think we got a guy we can send. Yeah, I don't think you can. Yeah, hopefully he won't want to be
Speaker 1 36:01
an astronaut. Yeah, I'm not, not worried about that. But he did
Scott Benner 36:05
mask. I know this is like, premature, because he's five, but, yeah, there's an episode of the podcast with the person who wanted to be an astronaut has type one couldn't be but she flies the space station.
Speaker 1 36:15
I think I heard, I think I heard that one, yeah, and I do think about that too, like there's so many other ways he could be involved, if that really is his true passion. So, yeah, he talks about wanting to be a doctor when he grows up. He really does well, you know, but I think, as probably some other type ones do too, they're used to the pokes and the fraud, so he's pretty interested at any kind of, like, medical appointment. It's
Scott Benner 36:38
awesome. Oh yes, no kidding. Like, you know it's, it's interesting. The kids at such a young age have thoughts like that. Like, I wonder how often they it actually bears out. Like, you know what? I mean, I wonder how many five year olds are like, I want to be a blah, and it actually happens, right? I'd be super interesting. There's no way for us to know, by the way, but I would be super interested. It's a great
Speaker 1 36:58
question. Well, especially because his endo also has type one, so I think that's like, a cool role model for him that you might not see represented everywhere.
Scott Benner 37:07
Do you find that helpful? Like, I mean, you don't have another experience, I guess. But I would imagine, like, I mean, listen, Dr Kasim, he's obviously really thoughtful about diabetes. Like, from my perspective, but still, like, does it bring you a comfort when the person who's giving the information is living it as well? It
Speaker 1 37:27
does, yeah, especially early on. You know, when you're going through that training that, first of all, I have a lot of questions and critiques of the training they provided us, but that's like, kind of a separate conversation anyway, when they're telling you, like, all the complications, I think that was like the final training went through, like, all the, all the complications that can happen with diabetes. And so I remember early on some appointments my husband and I, and my husband in particular, being like, Okay, tell me, like, kind of like asking for reassurance, right? Like, he's diagnosed so young, does that, you know, increase his chance of having complications? And just he, our endo was so reassuring about like, you know, we have great technology. We've got more data now, more studies to show, like, you know, looking at this time and range, looking at agencies, that the risk for complication, you know, decreases. So that that was reassuring.
Scott Benner 38:15
You know, how I feel, because you've probably heard me say it, but also because I we've shared the experience. I've had that experience too, where they're like, Oh, don't worry. Like, I actually had somebody say to me, the complications, they won't come for like, 30 years. And I was like, she's two, right? Like, so you tell me when she's 32 she's gonna have diabetes complications. Like, that's not comforting. I don't know if you thought it was maybe, but yeah. And having said that, I don't expect Arden to have diabetes complications in our early 30s. But I think that's because we figured out what we figured out too, like, dig in more. What did you mean? You didn't like the initial education?
Speaker 1 38:49
Yeah. So I felt like so much of it was it was too general. And I get that they're trying to reach a lot of people right in different times in their lives. There it was not just for kids. It was for adults, it was for people across like the diabetes, you know, Spectrum wasn't just toddlers with type one, and so I felt like so much of the information they were giving us like, you're so overwhelmed at the beginning, right? You're eager to learn, but also it's this, it can be this shocking diagnosis, and there's so much to take in, and you want to get it right, and you want to do it well, trying to do your best for your child. And so much of the information they were telling us. Like they felt like they were so focused on like, okay, when they're playing sports as high schoolers, this is what you need to do. And I was like, Listen, I have an 18 month old, like, I am not thinking about him playing sports. Like I needed to talk to me about how when he says he wants a snack, and then I do some for that snack, and then he doesn't want that and want something else. And they're like, Oh, well, it's different for toddlers, like I kept asking questions that I thought were relevant and important to our lives, and they're like, oh, sorry, this doesn't apply to you. Oh, sorry, you'll have to talk to your endo about that. And I was like, why am I wasting my fucking time with these trainings if you're not going to give me the information that I'm asking for and that I feel like I need so that that's my critique
Scott Benner 39:57
of those trainings. Awesome. Hey, a little bit of your Remy monkey. Him out there. Oh
Speaker 1 40:01
yeah, oh yeah. There's more. Where that comes from. Trying to behave myself. They're lucky
Scott Benner 40:05
you didn't have your purse with you.
Unknown Speaker 40:08
They're lucky they were virtual. I can't
Scott Benner 40:10
figure out what part of the country you're from. Like, I feel like I want to say California.
Speaker 1 40:13
No, well, I am from Michigan. Oh,
Scott Benner 40:18
oh, you Oh, beach. You mean a lake? Beach, not a not a lake, yeah, it's your voice is so clear, clean, I would put it like it doesn't have a ton of accent,
Speaker 1 40:28
that Midwest accent, yeah, I think that's because I've lived in different parts of the state, maybe travel a little bit, I don't know. But thank
Scott Benner 40:35
you. Thank you like because you know some of you guys sound like you're Canadian, yes, yeah, there's some bastardized version of it, at least. Right, right? Yeah, exactly. But then you cursed. I was like, there's a whole layer to you. I don't understand.
Unknown Speaker 40:47
Yeah, that's the east side of me in there. Yeah, no
Scott Benner 40:50
kidding, because, like, you're like, Oh, I went to the library to record this. I'm like, library. I didn't even know there were libraries. That's awesome. Love libraries, yeah, and you're helping people. And I thought this is just a nice lady, but just not you're a thug. I get it. I hear it in your voice now. I got it. I see what? You're hiding in there. You're hiding in there. Yeah, that's why you didn't want to talk about your husband's not being sure about having other kids, because you were going to go while murder assault. And you're like, let me tell you what I really think about this mother. Hold on a second. I let this guy be with me and look how he's treating me now.
Speaker 1 41:26
No, he, he is wonderful. He, you know, I feel when I see people talk about their spouses, their partners, not being kind of like equal partners in diabetes care for whatever the reason. Like, I feel so sad for them, because that is not the case in our household. No, that's awesome. My husband is so involved and is just incredible. So I am so grateful for that. That's
Scott Benner 41:45
very good news. I feel for every person who comes on here and says that, you know, I can't get my spouse or to be even interested in this, it must feel I don't extra alone in that situation. You know, wow. Okay, so you're, you have a little list here. You said, I believe other people can have a less traumatic experience. Was that just you saying, I wish everybody would finger prick at a at a doctor's appointment. Do you have more thoughts about
Speaker 1 42:09
that? Yeah, kind of well. So like looking, you know, there's some information out there, some studies that looks at the percent of children who are in DK when they're diagnosed, and it to me, it feels like it's too high. So like, yes, our experience, but I know that we're not alone. So I'm seeing a pattern of parents, yeah, not being believed, maybe the first time around, or really having to, like, push and advocate for more testing to get this diagnosis, and then their kids in really rough shape. And DKA is not anything that anyone wants, right? So if we could avoid at least that, like, at a minimum. Can we avoid kids going into DKA? I think that would be a win, or it could be decrease, because right now, it's at about what, like 30 to 40% of kids are in DKA when they're diagnosed, and that feels too high to me. Can we get that down to like, 10 or 20% that's where I'm coming from
Scott Benner 42:58
with that. It's a very simple, solid answer to a problem that doesn't seem to ever get any traction. And I've said this before, but I've seen pretty big organizations try to make it happen, and they just can't seem to make get it off the ground for some reason, I guess. Yeah, everything's so splintered and fractured around the country, it's hard to hard to get a rule up and running for everything, but I take your point,
Speaker 1 43:20
right? Yeah, it's a symptom of a bigger problem of our healthcare system and how it operates. And I don't blame, like our pediatrician, necessarily, do. I wish he would have listened better, sure, but I know that we're not alone in that experience, and so I don't see him as the problem it's I do see it as, like a systemic issue, but I'm sure that there's, you know, folks with other diagnoses who are like, advocating, you know, probably for similar things, like, you know, pay attention, please. But like at the same time finger poke feels so non invasive. I mean, they do regular blood draws of children, or at least at certain points in their lives, right? Testing for lead, testing for different things. And so this, to me, feels like kind of a lighter or an easier ask to incorporate. But there's, we're just going up against a lot of things in our healthcare
Scott Benner 44:06
system, right? And maybe every kid who has flu, like symptoms, doesn't need their blood sugar check. But if you maybe you could make a short checklist. If you you know, five things, do you hit? Yeah, maybe then go to that screener, yeah. How hard could it be? Is that's the horrible part. Is, when you're thinking about it, it feels like this shouldn't be that
Speaker 1 44:22
difficult. Shouldn't be that difficult. Yes, yeah, that's not how the world works, not
Scott Benner 44:26
so far. But I've only been alive for 53 years, so maybe it's coming. It's not maybe, by the way, it's not give up now, I don't know.
Speaker 1 44:34
I agree, like, you know, I'm sure. I know we've come a long way, right? And like our healthcare providers do, I think most of them truly care and like want to do the best they can for their patients and but I do also think it's okay for us to ask for them to be better.
Scott Benner 44:48
Yeah, no, I think it's imperative that we continue to ask everybody, politicians and doctors and anybody who's out there helping people to do their best. It's, I don't know if it's gonna make them but I don't think you should stop asking them to. So I agree, yeah, if you get complacent, then you have a real problem as a society. I think, honestly, you start accepting crap, you're going to get that plus some,
Speaker 1 45:11
I agree, and we see that it's possible. You know, in other nations, there does seem to be some traction for this. And I know I understand that the US sometimes lags behind some other countries in this area, but I do have hope that, you know, we can make things
Scott Benner 45:27
better. Good for you. I like that. You're hopeful. You're still in your 30s, and you've got a young kid. You're hopeful, yeah, yeah. Give you 10 years, she'll be like, listen, Scott, here's what I've learned. Nothing's getting better. I started smoking meth. You Yeah, I want to be fair to everyone. She said, I'm not there yet before I said the math thing.
Unknown Speaker 45:48
Thank you. Thank you for that clarification. You're very welcome.
Scott Benner 45:54
Oh, my God, so sorry. There's a tiniest bit of lag in your signal. I think it's what caused that. Just out. I just was like, Oh, let me be clear about that. Also, the library needs to apologize to rob, who's gonna later yell at me for all the edits he had to do in this
Speaker 1 46:07
episode. Yes, I was trying to avoid this issue by being like, plugged in at the library. I thought it'd be a more, a better internet connection than at home. But apparently, when
Scott Benner 46:17
I say this, Rob, leave that last one in where, where it gapped, where she said, avoid this issue, so that people can hear what we're talking about and then let everybody know that what Rob just left in where it said, avoid it's happened maybe like 30 times since you've been talking. Watch how you'll never know, because Rob's a genius, and he fixed it, and you should go to wrong way recordings and and hire him. Thank you, Rob. Yeah, Rob, wrong. Everybody wrong. Let me give it to you. Wrong way recording.com head over there. Now he's mastering an album this week. He told me for a band, and he does a great job on my podcast. And if one of you had a podcast that made some money and could afford to hire Rob, it would probably offset his life in a way that would let him, you know, charge me less, so I need to get Rob more work so that he can, he can make more money and be nicer. By the way, Rob's such a fair guy. His pricing is so fair. You're gonna love it when you talk to him, but I'm just teasing. Nevertheless, he does awesome work. Now back to your list. Oh, he's, he's opened my life up. A lot of the things here, we'll say one more thing. You know, you hear people say all the time, what's more valuable than time, right? A lot of the offerings you're getting back from the podcast about, like, online community stuff and more written content, stuff like that, it's all because Rob's editing and it actually gives me time to, like, pick my head up and do something. So my life for years was record the podcast, edit the podcast, sleep now. I'm not kidding either. So he might have saved the podcast, honestly, because I could have, like, I don't want to give him too big of a head, but like, I'm not 100% sure how long they could have done this for at the pace I was going. Nevertheless, your list says one last thing that I'm interested in spending time. We're grateful for meeting and spending time with other families with type one. How did you meet them? What did the time bring to you? What do you think? Why do you think that's
Speaker 1 48:11
been important? Yeah, so our our clinic, actually was able to connect us. So we, early on, we met some other families who also have boys the same age, diagnosed with type one, which is pretty incredible. We were meeting more regularly at the beginning, like about every month or so, but as people get busy, that's I think happened maybe like every other month or so, or like quarterly. And it's just it's so wonderful to be able to connect and, you know, empathize with each other and understand where we're coming from. And I'm happy to talk about diabetes with the general population, so to speak like and educate people if they have questions, it's not something that, you know, we feel like, ashamed or like need to hide. And I think because Remy was diagnosed so young, like he doesn't know any differently. And so I just, I'm trying to, like, kind of normalize that for him, and for it to not be a secret. And I like that he's in let people see it, I guess. Yeah, and, like I said, I'm happy to talk about it, but at the same time, it's also important to have that community where you don't have to be explaining things to and they just get it. And it's nice, I think, for kids to see other kids wearing little pods on their bodies and CGM and having to, you know, respond to the alarms going off when we're at the park or playground or where we are, and we just get it, yeah, it's just been really valuable community for us, and we're very grateful to have that.
Scott Benner 49:31
Listen, I know that I talk about everything, so it doesn't really bother me, but so many people articulate to me that they are not interested in explaining their lives over and over again to people, and that you need to have those conversations, but you don't want to go through the rigmarole of explaining the whole thing, and it's just such a big deal. I can't say enough how much I think community does for people. Community can mean a lot of different things. It could be online, it could be in. Person, but in the end, I think it's exactly what you're saying is somebody who understands and is living the same situation, so that you don't have to do all the unsaid things that go on in most conversations, because all of a sudden you're explaining the subtext, and it sucks. Yes, yeah. No kidding. In fairness to me, I love talking, so no way. So I don't really care. I think I said on the podcast recently, like somebody was talking about that, like, I don't want to share this. And I thought, Oh, my God, everybody in my family knows everything about me. And I said, and I said to the point where I said, probably, they probably know more than they want to know. And so then I later went and said that to my family. They're all clicked together. They all looked at me like, yes, yes. We all know way more about you than we want to know. I was like, oh, oh, gosh, that's hurt my feelings. But okay, oh, that's
Unknown Speaker 50:49
so funny. They're like, Yeah, of course, dad. Like, this is not news to us.
Scott Benner 50:52
Yeah, yeah. Like, sometimes I'm saying something, and Kelly's like, oh. And I'm like, you know, people online love this. You know, she always, like, says the same thing in return. She's like, they don't have to live with you. And I was like, No, I hear what you what you're saying. Yeah. She's like, good for them. Or sometimes, like, the way I talk about things, I'm like, you know, on the podcast, this is really helpful, because I speak kind of like long form, and it helps people understand and they can follow better. And she goes, this is not a podcast. I don't need an explanation. This is our family. But here's the thing that I can't help, right? And it's a little unfair to me. I just want to stick up for myself for a second. Go for it. I don't talk like this because it's a podcast. I just happen to have a podcast, and this is how I speak. So I do talk in pictures, yeah? And I I over explain things and stuff like that. So, like, it's not like, I'm like, I'm not on here. Like, oh, you know what the people want. I'll give them that. Like, this is just who I am. It just happens to work out for this. But in your regular life, like, it's not lost on me that I tell a story. I'm like, three minutes into it. They're like, when does this story start? I'm like, all this backstory is very necessary. Yes,
Speaker 1 51:58
it is. Yeah, my stories can be long and winding. And I'm like, Hold on, let me get back to where I was. But like, I need to share this one thing that's not really relevant. But like, I think it's relevant
Scott Benner 52:07
that you have this, yeah, no, it feels like a episode of The Dukes of Hazzard when I was a kid. Come on, in the voice would first be like, first, it's important for you to know, and then, like, and I feel like that. I feel like, look, there's a whole part of this you need to know, and then I can tell you the rest of it, because it's going to bring it all together for you. And sometimes it seems necessary. Sometimes it's not. Sometimes people like, you know, we could have figured out the second part without the first part. And I was like, Oh, I didn't know that's part of the process. I also want to say how angry I am at racism for killing the Dukes of Hazzard. Like you can't even watch it in reruns now, and probably for good reasons. But what a fun TV show. When I was, like, they just made cars fly through the air. It was awesome. Yeah,
Speaker 1 52:48
I never watched it, so I can't really, like, empathize with your point of view on that. But well,
Scott Benner 52:52
it's a giant car with a confederate flag on the top of it. I see where some people might be touchy about it. I'm not saying otherwise. I'm just saying, like, it was so great. Like, they just, like, cars just flew through the air, and people said stupid things, and they raced around on dirt streets, and that's all I really remember about. It's like the A team. But for hillbillies, no offense to hillbillies, by the way, had I not been, I don't know if I've ever been honest about this in the podcast or not, but had I not been adopted, I would have been raised in the mountains of the Carolinas.
Speaker 1 53:21
Yeah, I have some I have some family roots I can trace back to that as well. I definitely have some hillbilly in me. I mean
Scott Benner 53:27
it in a loving way, because apparently I am one, at least with the stuff they built me with. What do they call that? Genetics, right? Genetics? Yeah, or biology, I swear to you, one time I spoke to somebody in my what would have been my family like, my wife was like, she was like, I want to know about health stuff for the kids. So I'm like, All right, so we went to an attorney, paid an attorney to look into it, like they had to open up their records, like I had to, like, it's how we found out that my birth mother had passed away already, and that nobody, there's no birth record for a father, and this whole thing, like this, the whole problem, right? And I get somebody on the phone, and an hour later, I come out of there, and my wife's like, How'd it go? And I was like, Do you think you'll talk again? And I went, I don't think so. No. I was like, my wife's like, what's your takeaway? I said, I lived my whole life thinking that my mom was a princess who got whisked away to live in a castle and couldn't take me. I'm like, I don't think that's what happened. Better not to know. It's hard to know. It's hard to know. Yeah, also recently, I might have gotten because of one of these online I didn't think I was gonna say this on the podcast. I think I got, I've never on like, 23andme been like, that close to somebody like, you know. And so this person pops up, and we are really closely related. And I was like, All right, so we, like, started messaging back and forth, and, like, going back and forth. And like, I think my he's, like, said something like, I think my father could be your brother, or something like that. And then he like, and if he's listening, I'm sorry, but like, I gotta be honest, because I make a podcast. Is my whole stupid job. But, like, I clicked on a couple links, and I was like, Yeah, I'm okay, yeah, I think half brother actually. But still, I was like, I'm alright, yeah, I'll just be alone. There's nothing wrong with that. Nevertheless, no offense, yeah, no offense to anyone. But, you know, I think maybe I just, I'm not that interested. You get to choose your family. Well, I definitely do get to choose. And if I'm choosing, I'm saying no to that one. That's all I'm saying. So the rest of you who aren't adopted are like, yeah, man, we're all related to people who were like, Oh, I can't believe he's coming to Easter like, but I've never been in that situation before, right? It's not the same. Yeah, every family event I'm at, I'm not like, if you're like, a wacko, I'm like, not really related to you. I can be like, Wow, you're an idiot, but I have no ties to you whatsoever. I get to pretend that I'm better, but I'm not. But hey, it's an illusion. I get to hold up at least once in a while. Anyway, what have we not talked about? Like, you have I skipped over anything or not gotten through things that you wanted to say, like, make sure you get everything
Speaker 1 56:08
out. Thanks. So no, I think, like, the only thing, it's not really important that we talk about this. But when you asked me earlier, like, did his diagnosis, like change, kind of the vision we had for his life? Like, do we feel like it's stopping him from doing anything, and no, the diabetes diagnosis is not But interestingly, at the same time, he was diagnosed with diabetes. So you know, one of the things they do to check for brain swelling, they did a scan of his brain, and they're like, Hey, we found this really large
Scott Benner 56:34
mass in his brain. What? We
Speaker 1 56:39
don't know what it is, so we're gonna refer you or neurology, yeah, so they found it by accident, right? And we're like, oh, okay, so he has type one, and he might also have brain cancer. He does not have brain cancer, let me just say that. But like, at the time, we didn't know, and so we couldn't get into neurology for, I think, like, a couple months, for, like, a follow up scan. And so thankfully, what they found is benign. It's called an arachnoid cyst. It's very large, like the doctors are impressed every time about how large it is, that it's not affecting his development, or, you know, impeding him in any way. So they do kind of recommend against roller coasters and contact sports because of the increased risk of, like, a brain bleed that might then require some kind of intervention. So we did learn that kind of by accident, so they've been monitoring that, but it seems like he's gonna be okay and can just live with this huge cyst on his brain.
Scott Benner 57:24
Wow. But that must have, Jesus, that's unfair. That must have freaked you out, and probably still does to some degree, even though they're telling you it's okay Justin, it's still like, mess with you a little bit,
Speaker 1 57:35
not really. It's something I really don't think about very often, except them when they like, give us that call, like, Oh yeah, it's time to schedule, like, his yearly schedule. Yearly scan. We're like, Oh yeah, okay. You know the experience for him the second time. So the first time he was, like, sedated, so he didn't know what was going on. So, like, that was a pretty peaceful experience. But the next time he wasn't sedated, and they had to, like, you know, we couldn't be in the room with them, they had to, like, strap him down. So that was traumatizing, because we could hear him, you know, screaming and crying for us in the 30 seconds he was away from the room. From the room, so that was hard. So then we prepped him better next time around. But honestly, no, it's something I do not worry about,
Scott Benner 58:08
really at all. Good for you. Why are you so healthy? Oh, I'm not, but
Unknown Speaker 58:13
that is not what
Unknown Speaker 58:14
I'm here to talk about today.
Scott Benner 58:19
You're like, why you got that one way, wrong, buddy.
Speaker 3 58:21
I mean, I do my best, but hold this whole
Scott Benner 58:25
thing together with spit and bailing wire
Unknown Speaker 58:30
pretty much one day at a time. Are you from
Scott Benner 58:32
that part of Michigan that people talk
Unknown Speaker 58:35
about? Sorry, which part you
Scott Benner 58:37
know which part I'm talking about? Come
Unknown Speaker 58:38
on. Well,
Speaker 1 58:40
so depends. So I was born in the UK. Um, that's not where I grew up. I grew up in the middle of the states, but I don't, I don't live there any longer, yeah,
Scott Benner 58:47
my favorite disparaging thing I've ever heard someone say about where they were born was not said on this podcast, but it's a friend of a friend who said to me, once I'm from the lower, slower part of Delaware, and I went, Wow, is that a thing? People say, Oh, wow, I've never heard that before, but isn't there like, a bit of the, like, I own a little bit of land, and I don't see people that often, part of Michigan?
Speaker 1 59:09
Well, yeah, there's quite a bit of that part of Michigan. I would say
Scott Benner 59:13
anyway, the lower, slower part of Delaware was said to me 35 years ago, and it still sticks in my head, because I was like, that's a hilarious thing that only somebody from a place would know to say nevertheless. And who even knows if that's true. You might be in southern Delaware right now and say, No, I'm fine, and I'm sure you are. I'm sure you are. Who am I to judge? Nobody. I would like to stop this recording, though, and let me then and have you tell me your top two craziest family stories, because I feel like you've got a couple. Oh, man, okay, yeah, get one in your head. Then we'll stop the recording, if you can tell me, okay,
Unknown Speaker 59:48
okay, I for sure have one kind of two.
Scott Benner 59:51
Yeah, okay, all right. Is it going to beat the girl who told me that her parents got divorced and she was very upset she was still living in her. Home, she was young, she didn't know what to do, and she went to her older sister who was no longer living at home, and said, Hey, I'm very upset about mom and dad getting divorced, and I don't know what to do. When the older sister said, Try meth. Oh, no, I don't I don't have a story. Story that good. Okay? That poor woman, by the way, if I'm not sure if her episodes been up yet or not, okay, she was hooked most of her adult like she had just gotten off at a couple years before she recorded with me, like it stuck to her for decades. It's just, yeah, one bad piece of advice from one lunatic in your life. You know what I mean? Like, I don't know anyway, you must see stuff like that all day long
Speaker 1 1:00:34
with your job. Yeah, addiction. Addiction is really hard, for sure. I feel, I feel terrible, okay, all right. I'm glad I don't, yeah, work in that field. I
Scott Benner 1:00:42
just gonna say I feel lucky that it's not a thing that has attached itself to me. And, you know, I do see those addictions as health issues. And you know, I think you're just lucky if you don't have it to be perfect. Yeah, I agree. But do you have something else to say you want recorded? No, okay. All right, we're done. Thank you so much for doing this. Hold on one second.
Are you tired of getting a rash from your CGM adhesive? Give the ever since 365 a try. Ever since cgm.com/juicebox beautiful silicon that they use it changes every day. Keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better. The conversation you just enjoyed was brought to you by us, med, us, med.com/juicebox, or call 888-721-1514, get started today and get your supplies from us. Med. This episode of The Juicebox Podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox of my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? Hey, kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy? The private Facebook group for the Juicebox Podcast. I know you're thinking, Oh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community, Juicebox Podcast, type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in. We make sure you're not a bot or an evildoer, then you're on your way. You'll be part of the family. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.
Please support the sponsors
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
