Scott Benner 5/8/25 Scott Benner 5/8/25

#1516 Middle Name Danger

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Sarah is mom to a 16-year-old with type 1, diagnosed at 12. While there's no family history of autoimmune issues, Sarah has faced her own health battle with thyroid cancer.

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Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.

Sarah 0:14
My name is Sarah. I am the mom of a type one.

Scott Benner 0:19
Please 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 health care plan or becoming bold with insulin. AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure you check out drink AG, one.com/juice box to get this offer, don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com my diabetes Pro Tip series is about cutting through the clutter of diabetes management to give you the straightforward, practical insights that truly make a difference, this series is all about mastering the fundamentals, whether it's the basics of insulin dosing adjustments or everyday management strategies that will empower you to take control. I'm joined by Jenny Smith, who is a diabetes educator with over 35 years of personal experience, and we break down complex concepts into simple, actionable tips. The Diabetes Pro Tip series runs between Episode 1001 1025 in your podcast player, where you can listen to it at Juicebox podcast.com by going up into the menu, the episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and of course, at touched by type one.org, check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes, touched by type one.org this episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about mis boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses, learn more and get started today at Medtronic diabetes.com/juice box. I'm having an on body vibe alert. This episode of the juice box podcast is sponsored by ever since 365 the only one year where CGM, that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox you can talk to Jesus or breathe deep or do whatever you're going to do. And then you go ahead and introduce yourself. And then I will have a follow up question, which, this time I can't tell you what it is because I don't know yet. And then we'll chat for like an hour. Okay,

so you can go whenever you're ready. Okay, I'm so sorry. Don't be sorry. I was like, I was like, Oh, this is so

Sarah 3:20
this is time for my deep breath. I thought you were talking to Jesus.

Scott Benner 3:24
You're like, Jesus, I'm gonna make a podcast now. Please don't let me say anything embarrassing. I thought you were praying. And then I realized that she's just waiting for me to tell her to go again. So you go ahead and go. Okay, perfect.

Sarah 3:34
My name is Sarah. I am the mom of a type one. His name is Ian, and he is currently 16, diagnosed at 12 and a half.

Scott Benner 3:44
Sarah, let me just say this to the editor, please leave all that in. I think it's hilarious. So and the long gap of silence, Rob, leave the whole thing in. Okay, okay, to

Unknown Speaker 3:53
start, yeah, maybe

Scott Benner 3:55
people will take that time to pray. You don't know, I don't so tell me a little more. What your son you said, yes.

Sarah 4:02
So he's our middle child. It's always the middle child. I think that was diagnosed. So we have an older daughter who is currently 18, and then an accident 10 years later, that's six.

Scott Benner 4:17
You're comfortable saying that publicly? Ah, yeah. He knows. Everyone knows. Tell me the truth. After a wedding, how did it happen? No,

Sarah 4:25
I had one temporary lapse in judgment. I guess I have no idea you

Scott Benner 4:33
and your husband were feeling young. You had a good week. Nobody argued for six or seven days, apparently, yeah, went out for dinner Friday night, came over. You're like, you know what? I'm gonna throw this guy a bone now. You bone. Now. Is that what happened?

Unknown Speaker 4:44
Apparently, yeah, something like that.

Scott Benner 4:46
Forget him. He's been good all week. It was present time, and then, and then you got all into it, and you were like, I love you. We should like and that whole thing happened or No, not that thought out. Oh my God, not

Sarah 4:57
that thought out. The kids were like. You're pranking us. You said, No more kids. And I was like, kind of wish, but no,

Scott Benner 5:04
yes, sorry, pick a lesser school. Yeah, all right, well, that's fine. Okay, so you've got those kids that. How long goes this one diagnosed?

Sarah 5:14
So we're coming up on four years. Oh, wow, it's a good

Scott Benner 5:18
stretch of time. Yeah, and he was diagnosed when he was 12, yes, on his 12 and a half birthday. Oh, awesome. My dad left on my 13th birthday. That's exciting. Yeah, now I think I'd rather him leave than get diabetes, but being 100% sure, yeah, I think so Wow. How did you figure it all out?

Sarah 5:35
Classic, signs up, going to the bathroom all night, drinking tons of water. At that time, he was homeschooled, so spending day and night together, you know, you just noticed those changes. We had gone on a trip in April, you know, on the flight, he's in the bathroom like five times. Didn't really think much of it, that maybe he was just nervous traveling or whatever. And then, you know, symptoms progressed, and the signs were there. He was melting away slowly in front of our eyes, losing about 10 pounds. I'd say,

Scott Benner 6:03
Wow, did you have to use the internet to help you? Or did you know the signs?

Sarah 6:07
I knew them, but I don't know why I have a type one aunt, but I didn't grow up around her because she lives in Florida.

Scott Benner 6:14
Oh, so your aunt has type one? Yes. Oh, so you've probably heard enough over the years here and there that it clicked for you quickly,

Unknown Speaker 6:22
yes, yeah, I think so okay.

Scott Benner 6:24
And then you tell your husband, hey, I think the kids got type one. And their husband goes, nah, because that's what the guys usually do. But what happened? That's

Sarah 6:33
generally what they do. But with Ian, his appendix had ruptured the October before, and we kind of ignored it and let him lay on the bathroom floor and die for a few days before we took him in.

Scott Benner 6:45
So you're fine. Suck it up buttercup. It's going to be okay.

Sarah 6:49
That's right. We took him in. Well, we didn't even take him in. We had blown to Chicago for a conference. My husband and I and my mom took him to urgent care, and we're sitting at the airport waiting to board, and she's like, Well, they did an ultrasound and didn't see anything concerning. I think you're good to go ahead and fly. So we landed in Chicago, and I get a phone call. He's having surgery in the morning, if you want to come back. I was like, Really,

Scott Benner 7:14
so why do you guys fly around so much? You fly around like you're the Obamas. What's going on?

Sarah 7:18
No, I don't know. Traveling is fun.

Scott Benner 7:21
It's awesome. I keep thinking, I should go somewhere. You should, you know, I'm going to, is what I'm like, Listen, I'm promising myself right now I am going to just like, I'm going to go somewhere, even if it's just like a three day. I used to do these things when I was younger, like, I don't know why I stopped. So, okay, so he's have All right, let's go back to the Appendix for a second. Did you fly

Sarah 7:42
home? I didn't. I run it well, I said I'm not going to make it before the surgery. No matter what I do do, I really need to come. Ian's like, No, I don't need you there. Well, my mom texts me all that night, like, Mom, guilt, you know, you should really be here for him. Meanwhile, I am not the doctor, hospital parent. That is my husband's job. I don't do appointments. So I was like, anyway, I ended up renting a car that next morning and drove the eight hours, Sarah,

Scott Benner 8:08
you gave up on being Mother of the year early. That's nice.

Sarah 8:11
I did. I did. So they just placed a drain that day, that hospitals day, because he was too full of infection, because, like I said, we had let him lay there and die a few days. Yeah. So surgery was scheduled for six weeks after that, so went back in December for outpatient surgery, supposedly, but his appendix had ruptured and adhered all over, so they had to, like, scrape different things to get it all out. So that ended up being another hospital stay and another drain. So

Scott Benner 8:38
moral, the story is, when you sniff out the type one, nobody's waiting to go to the hospital. Everybody's like, no, no, we go right now,

Sarah 8:46
yes, except for the doctor. I called Monday morning, and they're like, well, we don't have anything until tomorrow. I was like, okay,

Scott Benner 8:52
great, listen, we've already tried to kill this kid once. We think we'll go to jail if it happens again. We so we'd like to Yeah, yeah. No, seriously, you easily could have been one of those news stories. Or, like, just months ago, Sarah and her husband didn't get him medical care when he needed it. Okay, what's that whole thing? Like, the idea that he has type one that things are going to change, like, where do both your minds go? This episode of The Juicebox Podcast is sponsored by the Eversense 365 get 365 days of comfortable wear without having to change a sensor. When you think of a continuous glucose monitor, you think of a CGM that lasts 10 or 14 days. But the Eversense 365 it lives up to its name lasting 365 days. That's one year without having to change your CGM. With the ever since 365 you can count on comfort and consistency. 365 days a year, because the ever since silicon based adhesive is designed for your skin to be Gen. Mental and to allow you to take the transmitter on and off to enjoy your shower, a trip to the pool or an activity where you don't want your CGM on your body, if you're looking for comfort, accuracy, and a one year wear you are looking for ever since 365 go to Eversense cgm.com/juicebox To learn more, today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox

Sarah 11:29
you know, I have a type one aunt, but like I said, I didn't grow up around her, and so I really had no idea what we were stepping into. Again, this is during COVID. Normally, one parent's only allowed, but they're like, you can both come it's important for you to be here, you know, the whole ICU stay to level them out, and then education, and just jumped in from there. Looking

Scott Benner 11:52
backwards, how would you describe what you went through? You didn't know what it was, what was happening, but in the rear view mirror, how would you describe it to someone else, overwhelming,

Sarah 12:01
drinking from a fire hose and then coming home and settling into that, you know, like your new life. Well, we had a camping trip scheduled for the weekend after diagnosis, and he was like, I still want to go. We're going, right? Because we were going fishing, and we went. It was a little overwhelming, packing everything, you know, because you don't know what you need in the beginning. So you're like, I guess I'm just taking everything. So move the whole house into the camper, and off we go.

Scott Benner 12:30
You know, I don't think people talk enough about the hollow feeling your house has when you get home after the diagnosis. I mean, if you've ever gone through like a death, like or a divorce or something like catastrophic you get home and there's a, I know it's not really the house, it's you, but there's like a stillness and a quiet that makes it feel like the house is hollow. And yeah, you went through that.

Sarah 12:57
Yeah, you're like, mourning what used to be. You know, you used to live this carefree. I can go anywhere, do anything, anytime, you know, like I said, Ian was home schooled, and so we were constantly, you know, going here, going there, and, you know, and then the beginning, you kind of feel like you need to hunker down and just figure it out. And, you know, change a lot of things. But in the end, I knew he was never going to eat a fruit or a vegetable, and we were just going to figure out carbs. So

Scott Benner 13:21
that was your early on understanding of it, like we'll just avoid certain foods, or,

Sarah 13:26
yeah, you know, we like, why I went to the store and did all the you know, you're like, walking through what is under 15 carbs that I can buy, that this kid will eat? And the answer is nothing, you know. So it's like you're standing there in the grocery store the first time, like, feeling so defeated with your Gatorade zero and the cart and your juice boxes for just in case, and how much meat and cheese can we possibly consume? I think a lot of people go through that.

Scott Benner 13:48
I was gonna say, everyone listening is like, Oh, I went on that grocery shop. I did that. It's

Sarah 13:53
insanity. Whenever you look back at it now, you're just like, What was I thinking? You know, you buy the quest chips that are never gonna get eaten the you know,

Scott Benner 14:02
people like, what are these? I'd rather die. Thank you. He's like, cardboard. I'm gonna pass. I just wanna say, and no shade for people who like it. But that is how I feel about magic spoon

Sarah 14:12
cereal. I never tried that because of all the, you know, negative feedback. We tried

Scott Benner 14:17
it one time, and I was like, you know, I'd rather just not, that's fine. We'll just never do this again. It's okay. Yeah. Anyway, it's overwhelming. It takes time to figure out. You have a certain expectation about what it is. How long does it take you to settle in, and when do you get the understanding of all of it that you possess currently? Like, how long does it take you to get to that point? I guess

Sarah 14:39
I would say, pretty quickly I dived in and was like, We got to figure this out. Nail this down. A one see you at diagnosis was 11.5 our three month checkup, it was 6.6 and we haven't seen a number in the sixes since then. So I think it was pretty quickly that I was like, You know what, what it is? But. Best case scenario for him, moving forward, fought insurance for a pump starting, you know, pretty close to day one, ended up getting that at three months instead of the six month wait. They told me it would be and, you know, just kind of all the things started listening to the podcast pretty quickly. I'm not sure how I found it, but once I did, you know, I started with the pro tips and the bold beginnings and just went through, like, devouring everything and trying to get him that good foundation to start out.

Scott Benner 15:25
Okay, do you insinuate that you have an A one? He hasn't anyone seen the fives now,

Sarah 15:28
yes, it's been in the five since January after diagnosis. I

Scott Benner 15:34
think so. And he doesn't have a specific eating style, all the carbs, and that's it. It's whatever you think he shouldn't have. That's the stuff. Yeah. The

Sarah 15:42
doctor was like, What's 104 carbs that you have every day at like, 330 and I was like, oh, that's an entire pizza. She's like, all right, you're very consistent. I'm like, yes, yes, he is. So

Scott Benner 15:54
you remember being young like that, it's awesome. I

Sarah 15:56
know a bag of pizza rolls, you know, just living the dream, oh

Scott Benner 16:01
my gosh. So he comes home from school ravenous, or ends his school day ravenous, yeah, yeah, I would say just that kind of time of day. Well, this is nice, like, I just feel like this is a story about how the podcast helped you take care of your kid. Is that what this is, it

Sarah 16:15
did. It was amazing, which I think was, like, vitally important, because, let's see, it was probably December after his diagnosis, I had surgery to remove thyroid cancer. So you did that was kind of another bombshell. Yeah, is

Scott Benner 16:28
there other autoimmune in the house? No, no, no. Just lucky you got thyroid cancer. Yeah, let's call it that. Okay. Well, tell me, let's go down that road for a second. So how does that rear its head? How do you become aware that that's what's going on and what's the treatment like?

Sarah 16:44
After I had our surprise, I was at my six week post baby checkup, and the nurse, as I'm walking out, was like, Have you ever had your thyroid checked because your neck looks large? And I was like, no, just

Scott Benner 16:56
say your neck looks large, lady. Leave me alone.

Sarah 16:59
Like, what are you talking about? You're insane. So anyway, I thought it was time to see a primary care physician and have that checked out. So they were following that with ultrasound for the last I guess it was four years before it was became an issue. I had nodules in both sides that hadn't shown any growth. And then in 2021 one side decided to double in size went down that road.

Scott Benner 17:22
Is the removal the end of it, or is there chemo or anything like that that goes with it.

Sarah 17:26
So I have nodules in both sides. I opted to only remove the side that had grown because the surgeon said, why would you take out both? If only one is an issue? And I was like, because I don't want to pay someone to slit my throat for a second time. And he didn't quite comprehend that, but between him and my husband, my husband was like, Well, if you broke your right arm, why would you cut your left one off?

Scott Benner 17:48
Boys about stuff like this, that's probably your biggest problem. Yeah.

Sarah 17:53
So anyway, I opted for one side. If I would have had both, they would have done the radiation. But since I left half in, we decided not to kill it off.

Scott Benner 18:01
So how do you proceed then? Like, what do you do? Like, is it just constant checking?

Sarah 18:06
Yes. So lab work in the beginning was every three months, then six months. Now we're at a year. I think I'm three years post op now. So technically, I think I'm declared cancer free at this point because my thyroid globulin levels have not increased, so that's something that we'll just continue to monitor. And if you know that left side that remains decides to go haywire, it should show up in some labs.

Scott Benner 18:28
Is it keeping up? Or do you need Synthroid? I'm actually

Sarah 18:31
on level because optimal TSH for someone post cancer is between point four and one, and my TSH was up to two, so they're trying to, you know, lower that number to keep the remaining a little bit suppressed. Okay,

Scott Benner 18:46
that all makes sense. Gosh, okay, you know I was going to tell you a little story. Do you mind? No, go ahead. Yesterday. Every one of my stories begins with yesterday, because I think I'm just so steeped in this that something is always happening. But yesterday, I had a person online tell me that they did not appreciate the way in which I delivered my like message, I guess like so to be specific, and this is not if this person is listening, you're not the only one that said this, but there's a handful of people, very excitable, that don't like using AI to make artwork for the website. Now, I have tried for years to hire somebody to draw things or create things in Illustrator or something like that. Their pricing was always prohibitive. I could never keep up with it, like I just I couldn't do it, you know what I mean? And so I went to this model because it works. I put up a lot of content. My website requires artwork to go with the content. And I can say to AI, like, you know, here's a transcript from today's episode. Make an image that supports it, and it does that, and in the end, it's great. Well, this person doesn't like that. I do that, and then this person doesn't like the way I moderate the Facebook group, and they don't like this, and they don't like. That. And I said, Listen, this is all very fixable, you know, I just, I need to hire a staff to moderate the group, you know, I'll need to hire some, you know, artists. And I went through the whole thing, like, I really went through the entire thing, and I was like, this is about what it would cost. I'd have to start a company to, you know, to employ these people. They're going to need health care. Like, you know, this and I said, so I'm just gonna need about $1.1 million a year to handle the staff and the costs and the healthcare and everything that will require to hire this group of people that you think I should hire. So if you wanna just like, you know, send that money over, I can get the whole thing up on its feet in a couple of weeks. And then the answer back is, like, well, you know, like, I still disagree with you. Like, oh, okay, so like, no real world conversation whatsoever. And in the middle of that response, I know that this is not like a positive apples to apples, but I kept thinking of Jack Nicholson the end of that courtroom drama in the military where he said something like, If you don't, like, in the manner I provide your protection, like, like, you know, like, I wish you just say thank you and go on your way or something. I found myself defending to the person and going, like, Look, I've helped 10s of 1000s of people. Like, if you don't like the way I'm doing it, like, that's fine. But like, why you got to come here and shit on my doorstep. Just don't like it, that's fine. But like, if you think you could do it better, like, go do it better yourself. But this is how I'm able to accomplish it, you know. And then I get on with you today, and I'm hearing your kids diagnosed. You're very carefree about it as a one season of fives, even though, for God knows why he's eating a bag of Gi knows pizza rolls every day. And I think to myself, like, yeah, I don't need to adjust what I'm doing, but Right? You know what I mean, like, but it's, it's a dip. It's a weird position to be in. And anyway, I'm glad you're here today, because it made me feel better, because I there was part of me that thought, like, oh, maybe I was too harsh when I responded, but I was really, like, insulted and pissed, I guess, to be perfectly honest. Yes, I'm

Sarah 22:01
very aware of this post. And the whole time you were talking, I could think the only thing I should say right now is, oh brother. But like,

Scott Benner 22:10
seriously, do you know what? What's the movie? It's a good movie. It's a courtroom drama about about Guantanamo and like, Does nobody by nobody? I mean, you and I, Sarah, are we not coming up with this?

Sarah 22:21
Nope, we're not. I am not that person for you. Hold on a second,

Scott Benner 22:24
hold on a second. Tom Cruise and Jack Nicholson, this should get us there. I got it. A Few Good Men. You've never seen. A Few Good Men I have, yeah. All right, well, all right, sir. So like, at the end of it, like, I don't know, like, he's, listen, he's obviously the bad guy, which is why this is a bad comparison, like, but, but when he's making his argument, he's like, if you don't like the way I do the thing I do for you, golf, I had a part of that feeling like, like, I am not willfully doing something bad. Like, I'm not like, like, you think I want to use AI art. Like, I don't want to, but it's my only option. I'm churning out 240 episodes a year. Like, you want me to get somebody to illustrate those? Like, seriously, I've talked to those people. They want to be on retainer. They want to make 50, $60,000 a year. I can't pay for that. And so instead of, like, stepping back and seeing the big picture, and to me, the big picture is your son, right? Like that, that, to me, is the big picture is helping people. So I'd like to ask you, how was it helpful? You said you used the episodes and the series and everything, but like you know, how it helped you along? Or is it almost not quantifiable? It just works. And you knew it worked.

Sarah 23:37
I think once you listen and start implementing, it just works. And you see it works. You keep, you know, doing the small things, and, you know, stalking the reports. You know, whenever you dig in, because he is on control IQ tandem. And so it's like manipulating those things, like figuring out the technology that works, leaning on other people's experience. It's just like such a huge conglomeration that you can't really pinpoint one thing or another. You know that you're doing. I don't know

Scott Benner 24:05
see I think, no, no, I appreciate that, because I genuinely think that that's correct. And I'll see people online, sometimes they'll say, like, well, I don't learn like that. Like you, you know, you give me something to listen to, but I can't, I can't learn that way. And I think, what do they expect to happen? Like, did they think that people just turn the the recording on, and an hour later they go, I understand all the things in the recording. Now I'm like, that's not how it happens. These ideas kind of melt into your mind, and then one day you find yourself in a situation and you just sort of know what to do. I learned how to take care of a pet that way, like I listened to a video of a guy describe how to take care of it, and when it was over, I didn't, I wasn't an expert at it, so I listened to the video again, and I listened to it two or three times. And if you would have given me a quiz after I listened to the video, I don't think I would have been like, got 100% on it, but, you know, a couple weeks or months later, and I was like, Oh, I know how to do all this and what. Right? You know, I just think it's how you learn through storytelling. But I think some people's expectation of learning is, we sit down, I tell you, two plus two is four, I tell you why, and at the end, you can describe back to me why. Two plus two is four, and you know, it forever now, and I just don't think this works that way. Yeah,

Sarah 25:17
absolutely. There was a family that, you know, newly diagnosed, and someone referred that they talked to me, and their response was, Well, what's she gonna do? The doctor already told me how to count carbs. That's all you have to do. And I was like, oh, there is so much more right than counting carbs, you know. And it's like that was all that they wanted it to be, you know. I think it's kind of overwhelming to think that there may be more than this one thing, but people have to, you know, see the bigger picture. And I was like, oh, there are so many variables and so many things. Like, I promise if you will just listen to this, your eyes will be opened and you will expound on that do not die, advice, and your child can thrive, and it took a long time for them to, you know, even be willing to accept that this was bigger than that. Yeah, and it's hard to watch people go through that and struggle for such a long period of time. When you think it's so simple,

Scott Benner 26:14
when someone says, I don't like listening to podcasts, I think to myself, like, okay, they never say I don't like listening to podcasts. So it doesn't matter. I found a better way and everything better way, and everything's fine. Now they say I'm in significant trouble. A 1c, variability, et cetera, is a mess. I don't know what to do, and now you're offering me a podcast, but I'm not a listener of podcasts like, oh, and then I swear to you again. I know this sounds badly, but I've now found the quote, okay, I have neither the time nor the inclination to explain myself to a man who rises and sleeps under the blanket of the very freedom that I provide and then questions the manner in which I provide it. I know that that's ridiculous, because it's not apples to apples, but some version of that, of that sentiment, yes, it's hard not to have it me, for me personally, listen, if you follow me online, you know, like, I don't talk that way to people. I don't come back and go, like, if you don't like what I'm doing, go, you know, go to hell. Like, I don't because I genuinely within the conversation. I don't know if this is confusing. I don't feel that way, right? I know some people don't like listening to things. I know some people are more visual learners, so they need to read to learn, or something like that. So I'm continuingly coming up with ways to help you with that. But that little tiny, like the ego part of you, the little guy in the middle, like in your chest, is like, off. I found a way to do this. Like, it's not okay, it just do it differently for me. And I'm like, I I'm trying anyway. Yeah. So here's one of the things I'm doing behind the scenes that I'll tell you about, and you'll be the only one who knows about it for very many months. I have a type one sign language translator translating all of the bold beginnings while she stands on screen and signs it. That's amazing. Now, yeah, it's going to be very cool for two reasons. First, it'll reach people who are, you know, hard of hearing or deaf, which will be awesome, but I don't imagine that's going to be a lot of like people. What I think is for the people who need a picture to be moving in front of them while they're listening, which is a lot of people, I think is why YouTube is so popular, like, because otherwise I don't really need to see two guys sitting down talking about something like, what would be the point of people watching us talk into a microphone right now? Like, to me, that's ridiculous. It's completely unnecessary. But for some people, they need it, so I thought maybe it will be visually interesting for those people to watch her sign while they're also getting the information. It's not a bad idea, right? No, not a bad idea at all. Yeah, you want to know what. It's expensive too. But it doesn't matter. I'm doing it because those people yelled at me and told me that they don't listen and learn. And so I'm trying something else now. They can watch and learn. They can watch and learn. And if that actually works, like if I actually see an uptick for that, or people report back, hey, that really helped me. Then I will try to raise money to do other things. I'm in contact with a company right now who might be able to animate the episodes like because I'm not gonna, if you want me to sit in front of a camera and do this, I'm just not doing it. I don't want to. I don't have the time to present myself that way. I record every day, like these people who make one video a month, like, that's not hard, you know what I mean, not that I could do, but I can't do every episode that way. I don't have the infrastructure for it. I don't have the money to pay for the editing. I don't I I'm not in a room that is visually pleasing like this is room, is room setup for me to talk into a microphone. You not see me. You know what I mean? Yeah, so you see my chameleon behind me. You're gonna think I'm insane. Maybe you really will. You'll be like, Oh, I'm listening to an insane person tell me about Pre Bolus confirmed. Now he is insane. There's a fing dinosaur behind him, and he's trying to tell us about, I. He's looking at me right now, by the way, I will feed you. Don't worry, buddy. Hey, there you go. He's literally he doesn't like the color of my sweatshirt.

Sarah 30:06
Aren't you surrounded by them? Now, how many do you have? I don't

Scott Benner 30:09
like to talk like that, because I think it's insulting to me and the people around me. But there are, there are three chameleons in this room, okay, yeah, and they're all different kinds, and that's it. I won't be a person with 10 chameleons one day or something like that. I have I have one that is incredibly active and colorful, and I have one that is incredibly sedentary and huge and literally looks like somebody just put a dinosaur in here. And I have one that's just crazy and like a voracious eater, like if anything I threw in there right now, this one would just go across the the enclosure like a shark and just annihilate it in two seconds. The truth is that last one I described you is the first one I got. And if I'm being honest, is not the one I wanted way to go. Kids, yeah, but my family got me, and I think she's awesome. Like, I really, I love taking care of her, take really great care of her and everything, but, like, it wasn't the one I wanted. So I have the one they gave me the one I wanted, and then a third one, just because, honestly, I had the space, and the space was being used already. And so I just thought, like, well, the space is sitting here empty. I should just do something with it and and then I just picked one that's just like, he's really bizarre. He never stops moving. He's just constantly moving around. And he's really awesome. Anyway, they they relax me. I turn around, I look at them. They relax me. They give me a good break, like in the middle of my work day and stuff like that. So a nice thing to step aside distraction, yeah, yeah. But I can't leave this room because I'm busy making this podcast so people online can tell me I'm doing it wrong way to go. Have you ever heard somebody say you're doing it wrong, and then wait, I'll do it myself. And like, no, they just wanted to let you know that it's this is not commiserate with how they would do it if they'd get off their ass and do something. I mean,

Unknown Speaker 31:59
it sounds like every husband wife relationship to me,

Scott Benner 32:04
really about, like, the dishes or bigger things. I

Sarah 32:08
Yeah, the dishes, you know, right? It's really not that hard,

Scott Benner 32:13
yeah and then, but the dishes get done no matter what. Yes, they do. Oh, look at you. You're so upset to admit that it doesn't matter if you load the dishwasher incorrectly or not. So funny. All right, so your kids using tandem, yes, which one control? IQ, Moby

Sarah 32:31
control IQ, he's wanting to make the switch to Moby in August when warranty is up. So okay, we will most likely be doing that

Scott Benner 32:39
to get a less connected feeling.

Sarah 32:41
No, just because it's smaller, I don't know, just in general, smaller, yeah, he doesn't seem bothered by it. He, I mean, we put like, a clunky case on it, and he still shoves the whole thing in his pocket with the clip. I'm like, why don't you take the clip off? He's like, That's fine. Like, he's not bothered by a whole lot. So

Scott Benner 32:58
Arden got low last night at like, 330 in the morning, she got low because at eight o'clock at night, when I could tell that her pod site was failing, and I said, Hey, I would change that now, before you ate, because it's failing, you can look back at the last three hours and see that the algorithm is having trouble keeping up with your blood sugar. This is the very end of the pump. I 100% sure that this is it's like occluding somehow you should just change it. Now she does not do it. Few hours later, I'm gonna say eight minutes after eating dinner, the pod just fails. And she looks at me because I think what she's thinking is sky was right about this and like but I don't say anything. She changes the pod, and I said, Look, you just had a pretty big dinner. You're gonna get a high blood sugar here. Now, for sure, I'm almost thinking that the pump, the Bolus you just made for the meal, is not gonna nearly be enough. Certainly that happened. Her blood sugar shot way up. It was hard to get down. It took a bunch of insulin to get it down. Made her low at three o'clock in the morning. And today, when we spoke about it, I said, Listen, I'm not busting your balls, but if you would have just changed your pod before dinner, you wouldn't have been up at three o'clock with the low blood sugar, like, and I didn't say it like that. I was very nice about it, like, I was like, Look, you know, hey, I'm like, I'm not giving you crap. Like, but this is a great opportunity to see that if the pod would have got changed before dinner, then it would have worked better on the meal. You wouldn't have got high. There wouldn't have been a big correction, you wouldn't have got low later. Thanks, Dad.

Sarah 34:28
Yeah, that's we had a new restaurant. Last Day. We tried a new Chinese place, and saw blood sugar in the 250s which we haven't seen for, you know, over a year and a half, you know. And it's like, oh my goodness, what are you doing? So it's like rage Bolus, that thing, and we'll catch the drop when it comes, if it comes, hopefully it comes. So, you know, we caught it with half a juice and half a granola bar, and coasted in the 90s the rest of the night. But before he went to bed, he was like, see you in the middle of the night. And I was like, No, we got this. We. You know, it's all right, but he's still counting on me to be the middle of the night person, and it's like,

Scott Benner 35:06
oh, so how do you handle that idea of transition? What do you give plans? Are you just one day of timing it? Or what are you doing?

Sarah 35:12
He does 99.9% of everything. I am not involved anymore. It kind of makes me a little sad. So he will let me do his cartridge change in his pump. He's like, do you really need to do this? You can do it. He's still letting me be a little involved and but most of the time he has taken that initiative and then, like I said, if it's this was like a one off, hasn't done this in forever. And he's like, You got this, you know, it's like, I'm not waking up for it, but I will gladly still be there. So

Scott Benner 35:46
do you think he is willfully giving you tasks to do because he knows you want to be involved, or is he offloading the crap he doesn't want to do because he knows you'd be willing to do it?

Sarah 35:56
No, he's letting me be involved. Because if he, like, changes it. He's like, I'm like, Isn't it time to do it? He's like, I already did it. I'm sorry. And I'm like, Really, I feel like I want to, like, take, you know, I don't want him to experience burnout. But so far, he's just been amazing about everything and, like, handling it all. And I'm like, you know, I'll still redo his calendar, and we have little magnets for site days and a different color for, you know, Dexcom and all that. And he's like, I forgot to change his calendar because his dad and I were on a cruise. And he's like, I did my calendar. I'm like, I'm so sorry. I feel like such a failure.

Scott Benner 36:33
Oh, you're trying to get the mom of the year trophy back. Now. I'm

Unknown Speaker 36:38
trying. I'm trying.

Scott Benner 36:41
You're like, I should have flown home for the appendix. I'm sorry. I'm

Sarah 36:45
so sorry. No, we went to the touch by type one conference this last year, and we went to Erica session, like the teenage session, and she recommended some diabetes etiquette resources. And he likes to point out rule seven, mom, rule seven. So I kind of took a step back, because that is, recognize that I'm never going to be perfect with my diabetes care, no matter how much you want this. So I used to, you know, if he's going high, which high is set at 150 I'm like, What are you doing? He's like, I've already corrected. What do you mean? What am I doing? You know? So I've tried to, like, take a step back from that, and I'll, I'll talk to him. He's been in the 150s for like, an hour, you know, I'm like, What are we doing? But, you know, I used to micromanage a lot harder than I do now, so I feel like we're slowly making that transition more on my part than his, because he's, you know, like I said, got a good handle and getting

Scott Benner 37:35
there is your first born girl or a boy, a girl. Oh, so this is your oldest boy? Yeah, he's my favorite. I was gonna say I don't want to, like, pull the curtain too far back on basic human psychology, but ladies seem to love their first son a lot.

Sarah 37:50
Yeah, he's been my favorite since birth. I'm not really sure why, but yeah, maybe it's the first burn boy thing that or raising my daughter is, like looking a mirror. It's really hard to raise yourself.

Scott Benner 38:02
Oh, really. Oh, that's an interesting point of view. She and you are very similar, yeah. What? So what does that do? Help me for a second, Sarah, does it make you have realizations about yourself that are upsetting,

Sarah 38:17
not upsetting, maybe frustrating. Like, man, you are just like me. How can I like criticize what you're doing right now? Because I am the same person. Oh, no. It's that you want better for them than you had. But when they're you, I mean, they're gonna turn out all right, because I'm pretty amazing,

Scott Benner 38:34
it's gonna be fine. Look at this package. Everything's going my way. Oh, and so the boy is, he's nothing like you. No, no, but he's like the guy, the boy that you married, who you're irritated by constantly. No, no, I don't know, half the time you were irritated by him.

Sarah 38:53
No, I've got a really good setup, you know. I've been a stay at home mom and oh, okay, I'm living the dream. I always

Scott Benner 38:59
watch it happen, like, when the kids do something that's more my personality. And Kelly's like, okay with it. I'm like, How come I don't get this pass? Oh, Sam,

Sarah 39:09
yeah, well, my husband and my son are both so easy going. Yeah, it's like, they're Arden

Scott Benner 39:14
said something like, funny but shitty to Kelly the other day, and she just it went right past her, and I looked her in the face, and I was like, Are you not going to say anything about that? I was like, because if I would have said that, my God, we would have never heard the end of it. That's really interesting. Okay, so you are using some of the stuff you heard from Erica in person. Now she and I made a series on that presentation. How did the series compare to seeing her in person,

Sarah 39:41
in person was just, there's no way to describe sitting in a room full of parents who are grieving the same thing you're grieving. I don't know, valuable or too sad. It's so valuable, valuable, okay, yeah, sad, but valuable, you know?

Scott Benner 39:56
And then hearing her do it on the podcast, was it a good reminder? Did you. Think to yourself, this is everything that I heard and more live, or was it not as good? Like, I'm trying to figure out if the content was good for you.

Sarah 40:08
The content was good, it was everything that we went over in person. It was just a different presentation. I don't know how to describe the difference, because you're sitting there in the room like tears rolling down everyone in the room's faces, you know, like as we're all experiencing this together, reliving all of those things, like trying to figure out how we're gonna put all this into practice, and then you hear it on the podcast, and it's a good reminder to take those steps and do those things for yourself. And I would say it was more powerful being in person, but the podcast was still excellent. And, you know, like I said, all the same content. That was okay.

Scott Benner 40:41
She's really lovely. I'm very lucky to have met her. So, yes, yeah, yeah, okay, oh, that's that's good to know. So what were your big takeaways from her, like, I mean, it sounds like rule seven is, like, leave me alone. This is never going to be perfect. What are some of the other

Sarah 40:55
ones? Yeah, just opening that communication between my son and I, because we went to her teen session, and then I went to her caregiver session as well. So realizing, you know, this handoff is happening, and he over communicates sometimes, whenever he's like, don't pay attention to this. Don't worry about it. I've already done this, you know, and that was him foreshadowing me getting ready to harp on him for something that he's already done. You know, opening my eyes to those things that were happening was very helpful. Yeah. Do you think

Scott Benner 41:20
it'll help in other parts of your relationship? Because, like, I imagine when he does that the foreshadowing thing, which is basically just him defending himself in the future against something he knows you're going to do. Does it give you pause? Do you think, Oh, he did that? Because I'm about to do this, and I probably shouldn't do that.

Sarah 41:38
I didn't see that until, like, I said going to Erica's thing. I didn't realize, you know, how much I was doing that, yeah, and so, yeah, I think it's, like, completely changed. You know, our relationship in reference to diabetes, which it's not a huge part of our everyday lives, just because it's kind of background noise at this point. But, you know, I could see where that was, you know, taking a major toll when he felt the need to defend himself.

Scott Benner 42:01
I will give a free piece of advice out to the moms, telling long, drawn out, detailed stories about your kids private life, to other people, they don't like that. You shouldn't do that, but you guys all do it. You all like, get on a phone call. You're like, oh my god, did I tell you the thing that happened to Billy? And then, like, you know, like, 20 minutes later, I have like, a compendium type understanding of what happened to Billy. Billy finds out and goes, I wish you wouldn't tell people that. And you go, I'm just telling people about my life like that. I see happen a lot. You're laughing, sir, this has happened.

Sarah 42:32
Don't feel like it has, but I know the moms you're talking about.

Scott Benner 42:36
Oh, okay, yeah, don't do that. That's that's not good. Or, yeah, if you're looking for a simple way to make your relationship better with your kids, literally don't do that. So it's tough, because it's hard to see the difference between bragging and just being proud or just wanting to share and what another person sees as private, right? You know that's hard. So having kids it's terrible. It sounds like you figured that out early.

Sarah 43:02
Oh, yeah, yeah. How old are you?

Scott Benner 43:06
41 oh, how old were you when you had your daughter?

Unknown Speaker 43:11
She's 18, I don't know. 22

Scott Benner 43:13
do you make any of these kids on purpose or No, no, I don't understand people

Unknown Speaker 43:18
that do that. I can't wrap my head around that.

Scott Benner 43:22
Oh, it's awesome. The third one just on his own, feral. You don't really pay much attention.

Sarah 43:26
Absolutely, he's insane. So he's the first one that ever broke a bone, you know, like climbing the walls, doing all the things. And Ian's middle name is actually danger. And our family, before his diagnosis was like, I think you name the wrong one danger, because our youngest is just insane, but then he's kind of made up

Scott Benner 43:45
for that. Your type one's middle name is literally danger,

Sarah 43:48
literally because his dad thinks he's hilarious. Oh,

Scott Benner 43:51
I was gonna call this episode A Few Good Men, but now I'm gonna call it middle name danger. It's awesome. Danger is my middle name. Danger is my middle name, okay, all right, we'll do it like that. It's a little long that way. Danger is mine. You see, I don't like to get into the five word titles, but it'll name Yeah, I'll figure it out. Don't worry. Hey, your husband like he wasn't using, like, I mean, you're from the middle of the country, like he wasn't on meth when he came up with that, or anything like that,

Sarah 44:15
right? No, but the hospital did call to verify that his birth certificate worksheet was correct. I might have been on drugs, but I had a natural birth, so I was like, yeah, that absolutely wasn't the case. How

Scott Benner 44:27
absolutely fucking jazz was your husband when the hospital called to double check the name, he must have been so proud of himself,

Unknown Speaker 44:34
yeah, yeah.

Scott Benner 44:37
Is that the moment when you think like, I wish I was gay.

Unknown Speaker 44:42
Might be up there. I'm

Scott Benner 44:43
stuck with this boy. And what do you think is funny?

Unknown Speaker 44:47
Yeah, we

Scott Benner 44:48
were watching the Super Bowl, and Arden watched with us. She never watches football like ever. She doesn't understand it. She doesn't know the first thing about it. But she sat with Cole and I for the super. Ball. I don't know if people don't watch football, you don't know this, but if there's a fumble, you yell ball, you know. So everyone on the field knows the balls out and they'll catch it and pick it up, like, you know, like screaming during the game, like, you know, there's a fumble, like, ball, ball, get him, kill him, that kind of stuff. And she's like, mom, she's like, they're really excited. And then later we had this, like, very real conversation, where she goes, I don't understand how excited you are about this. Yeah? And I'm like, No, I know she goes. Is this, like, your Grammy Awards? And I'm like, what she goes? You know, when I watch what's the um, the gala at the the Met Gala, Arden watches that, like she finds a way to watch the red carpet and the whole like she watches the red carpet for the Met Gala. And she goes, this is like that for you, isn't I was like, I am not even comfortable with you making that, that comparison, to be perfectly honest. Like I was like, but I guess so she goes, You guys are so excited. And I was like, issues. I don't know why. Anyway, boys are hard to figure out sometimes. So we're girls.

Sarah 46:10
Yeah, Ian said a big football fan, but he was invited by Noah gray to go to, like, pre season practice or something. They had, like, a VIP event for type one, yes, yeah. So he went just out of well, wanting to see a girl that he had met a diabetes camp, unbeknownst to me, but so he was like, hey, they're having this thing at the Chiefs practice. You think I can go? And I was like, This is bizarre.

Scott Benner 46:39
And you're sure, then you Oh, he's just going to see a girl. Yeah for him, yeah, they're definitely going to make a baby with diabetes if, yeah,

Sarah 46:48
no, that that's ended. We're done with that.

Scott Benner 46:53
Listen, I didn't realize. I didn't do the math, actually, when you said you were from Missouri, and it doesn't sound like you're big football fans, so this probably won't mean anything to you, but I just want to let you know how apps you know how absolutely elated I was to annihilate the chiefs in the Super Bowl. It was very painful to watch no good I'm glad

Sarah 47:10
Ian was trying to sell his signed hat before the end of the game. He's like before this goes really terribly. Anyone want to buy my autograph Noah gray

Scott Benner 47:19
hat or Noah gray. Noah has type one diabetes. For people who don't know he's the I mean, I guess he's the number two tight end on the chiefs, but after what I saw this past weekend, he'll probably be the number one tight end on the Chiefs next year. Yeah. Nevertheless, also, you know what's funny? Joking aside, I spent 15 minutes last night watching Travis and Jason Kelsey talk to each other after the Super Bowl ended, and taking away all of the ridiculousness and the the football and the comp, the competition and the violence and like, and just watching two people who just, you know, this is what they do for a living, and they've been working at it since they were kids. And like to see them talking about it, it humanized it to the point where I was like, I can't watch this. It's gonna ruin football for me. I want to see them as characters in a play. I don't want to see them as people. Yeah, you know what I mean, and I guessing now, as I'm saying that that's probably how the person's able to come online and tell me that I'm doing it wrong, because I don't think they see me as a person who feels the way I feel, and they see me as a character in a play, and, God damn it, they're just the voice in

Unknown Speaker 48:26
the machine. You're not. I can't believe the

Scott Benner 48:28
conversation went this way, because now I have to apologize to that person. She doesn't think of me as a person. She thinks of me as the voice that makes the thing, yeah, because Travis Kelsey is not a person who's upset that he's old and didn't play well in the Super Bowl because he felt old. Oh my god, he could not move in a couple I felt bad for him. There was a goal line play where he was supposed to pop off and get open. I was like, He's not even moving. I'm like, like, he's Scotty slow. And to think about the drop off that must have from where he was, because, I mean, he's obviously one of the best people that's ever, like, done it performance wise, you know, and to see it fall apart so quickly, and then people start joking like it's Taylor Swift's fault. Like, you know what? I mean, that stuff's not cool. Like, I mean, it's not Taylor Swift's fault that he's older. Oh, God, all right, well, I'm sorry to the person who said that to me. I know I if we were in person and you were talking to me, you wouldn't say that stuff. And far, because I wouldn't say that, I wouldn't say that to Travis Kelsey, you know what I mean? Yeah, like, I felt bad for him. Sucked. He was terrible. There was one play where, uh, Kermit, the frog got away going to the right, and so, like, he's moving right, and Kelsey is supposed to come up and Chip somebody and then be open and kind of drift across the middle, and he just gives up on it, like you're watching the wide play, like Kelsey, I know there was a flag, and he probably thought, like, this is coming back one way or the other, but like, his amount of effort was nothing, and like, and the play is just going on and on and on. And he could have rolled towards the play and tried to help him, and he just. And I thought, wow, that's it. Made me talk with my son about the game, and I said, you know, like, you don't realize, like, how demoralizing it must be. Like, they showed up there and they were like, We're gonna win. Like, this is gonna happen. And then before you know it, it's later in the first quarter and and they're down by a lot is happening? Yeah, yeah. And they they can't complete a pass, they can't move the ball, they can't do anything, and the flags aren't helping them, which, you know, we can argue one way or the other about, but they've clearly been helped along the way in these last couple of years, here and there and like, so none of that stuff is happening, and then it's going bad again, and you're still human. Like, you know what I mean? Like, I just feel like, in his mind, he must have been like this. Just nothing's working, you know. And then, then that's what Cole and I ended up talking about like, because I related it back to other parts in life. Like, if you get up every day and do a thing and it just doesn't come together for you, and you're doing the right thing. I get how people quit or get burned out, you know. And so, and it made me think about diabetes. Then, like, in all of you, like, you get up, like, as I saw somebody say the other day, I've listened to the pro tips. I understand what you're saying. It just doesn't work out for me. And I know that if I was there, I could probably see the bit that, like, they're missing. I can't do that. I can't go live with the person for three days and figure it out, and they're not getting to it. And to me, like that message I got online is how, when I saw that message, I felt the same way I saw when I saw Kelsey throw his hands up in the air, like, like, this isn't gonna work. It's terrible. Like, you know that feeling is terrible in general. Anyway, I didn't mean to be thoughtful about football. I just want to watch them knock each other's heads off and run around and score. But it seems like they might be real people, so I guess we can't do that. Yeah. Anyway, tell me a little bit about what it was like to sit through that soup. No, I'm just kidding. Could you just live through the pain of it for me, of watching nothing now, I'm joking. What do you want people to know about diabetes? You've been it doesn't have to be hard. It really feels that way too. Yeah, yeah, that's awesome. And

Sarah 52:06
maybe that's because I'm not the one living with it. I don't know. Do you think your son thinks it's hard? No, no, he actually has aspirations to go into health care and do something with diabetes. So,

Scott Benner 52:18
oh, good. That's nice. But you don't think he doesn't struggle No, and he has never

Sarah 52:26
No, and that's what I'm just I think part of me is just kind of waiting for that to come. I hope it doesn't ever come. But, you know, the reality is that it's highly like they let he will experience burnout at some point. But I think so. I don't know. And the age of automation, maybe not. I

Scott Benner 52:45
don't know. Like, Arden's pretty automated, and I still think there are times where she's just like, like, there's only so much I'm willing to put into this. Do you know what I mean? Yeah, like that, not willing. Might even the wrong word. Like, just able. I think maybe is a better word. Like, from my, from my perspective, I just like, Forget diabetes. I think anything you have to do every day would get to you, right? You joked about marriage, like, three different times. I have to, like, it's hard. Like, and it's not hard because it's bad, or you don't love the person, or you're not motivated. It's hard because it's every it's every day. Yeah, you know, like, my wife's going away for for business, and my son's going away the same weekend with his girlfriend, and Arden's going away somewhere, like, for the night. And I was like, So you're telling me that Friday into Saturday, I'm by myself? And they were like, Yeah. And I thought, oh, it's gonna be awesome. I'm not that person, like, I love being around these people, like, and still, like, they were all just gonna be gone for a day. I was like, and I'm sure they're thinking the same thing about me. They're probably, oh, this guy just talks so much about everything. I can't wait to not talk about things like, because, I mean, look at me, my son's 24 four days after the Super Bowl. I'm talking about humanizing Travis and Jason Kelsey with him at 1130 at night last night, he's probably like, Dude, can we just laugh at this meme? Some guy sent a picture to Travis Kelsey that said, you should have stuck with the thick girls. And my son found that very funny and like, but it's not like, not on a personal level. Like, on a personal level, like you're saying, like, hey, the person you're with right now in dating and probably love like, that's a mistake. It made you bad at football, which none of that's true. But like, right? You know, you remove yourself from all the personal stuff. Anyway, I'm in there, like, trying to, like, talk about people's feelings and giving up and stuff like that. And he's probably just like, man, like, Let's just enjoy this. Yeah, yeah. So they're probably thrilled that they're leaving here. You know what I mean, yes. And how great would it be if you could just, like, because you hear people say it all the time, like, if you could just take this from me for a couple of days like this, the management of it and the thinking about it like, that's a message I get from adults a lot like, you know, it would be so cool if you could just come here for a couple of days and just just push the buttons. Yeah, don't let me have to think about it. So you're already thoughtful enough to know that as well as he's doing right now, your expectation is that he very well could trip and fall at some point. Right? Yeah. Do you have an idea of when you think it might happen?

Sarah 55:16
I don't know. He got accepted into a CNA program for his last two years of high school. So I'm wondering if, like, the mental load of the extra, you know, college level courses while he's in high school and maintaining all of that is going to be, you know, where it's a little bit more than life right now has been pretty easy scholastically. So I'm wondering if, when he gets into more mental load with school, if diabetes, mental load will take a back seat, or you know what that's going to look like, I

Scott Benner 55:46
have an expectation that I'm going to have a conversation with Arden about two or three years from now, where she's going to have some clarity about her stress level once she got the College and I'm wondering what she's going to say about it too. So I think you're, you're smart to think about it that way. Like, yeah, today it's not that big of a deal. But, like, the extent of his problems are, I might like this girl at the you know, and I Wait, I gotta find a way to get to Kansas City. Yeah, I got, listen, I really have to get to Kansas City, and I need pizza rolls when that's your life, then the diabetes doesn't seem so bad, but Right, if you're carrying a course load and you're you know there's expectations, and those expectations are both about your future and their financial and their everything else, and like, at what point does your capacity bubble to the top? And you have to let some steam out. How are you going to get the steam to be college or my dating life, or the other things he's worrying about, it's going to be so much easier to let go the diabetes stuff. Yeah, yeah. Sucks. Yeah, yeah, yeah. Sarah's like, yes, it sucks. The whole thing sucks. Yeah. I keep thinking about making a short series, like, series of, like, five or 10 minute conversations, where just somebody comes on, introduces themselves, and then bitches about one topic, about diabetes, straight through, and then it stops. Yeah, it might be a never ending list of people who are interested in doing that. You know what I mean? Like just bitch just a bitch session for five seconds to let it out. But I don't know. Is there anything we haven't talked about that we should have? I don't think so that's it. I

Sarah 57:22
didn't send anything on my list. I just thought it'd be nice to chat. So we've covered everything I included,

Scott Benner 57:27
yeah, oh, that's awesome, because your thing, you've maybe the the least descriptive, like, let me It says, what are some of the themes you hope to cover in your episode? And you said, who knows? Right? Teen years and the balance of control and independence, that's what you said. So yeah, and it's tough, because you talk about it, it makes you feel like, oh, I need to give somebody an answer. And even the people listening might be like, Oh, Sarah's gonna have the answer to this. But I think the answer to it is to just be ready for it, right? And then try to be mindful of who you are in the scenario, who they are, what the implications are, and how you can release pressure from people in certain ways. Like, you know, like, your your son's already showing you, like, here's some things, Mom, you do that I don't like, right? Like, don't do them. And then you realize that. And did you have any success stopping? Yeah,

Sarah 58:19
I feel like now I'm I'll be quiet until we hit the two hour mark of staring at a 150 and then you're gonna get up and you're gonna drink some water and you're gonna do some things, but I'll leave you alone until then. So

Scott Benner 58:34
I think that's reasonable. Is you see a person in the in the group recently say, hey, my kids, just like ignoring all my texts and like, they don't know what to do. It's funny because my initial thought was kind of what you thought, and what we've been talking about here is, like, you can't be too overbearing. That's not going to be okay. You just quit texting them. But if it's really an emergency situation, you absolutely have to hear from them. Like I said, like, I'd send to find my iPhone. They're very hard to ignore, right? Yeah, but at the same time, like, that's not a thing you do every day, like that's a thing, like, if there's a real, genuine emergency, not if the blood sugar's 160 for a couple of hours and they're not doing anything about it, you've got to balance management, long term health against psychological impacts and your personal relationship, you know, like there's a lot here to balance, really, my god, yeah, there is. I want to finish with. I just want you to go back over something with me. You said sitting in the room talking to Erica was emotional, and I'm wondering if you can put words to the why it's

Sarah 59:39
hard to describe to anyone who hasn't experienced diabetes, how life changing it truly is. And all those people understood that in that moment, I guess, feeling understood and related to

Scott Benner 59:53
Yeah, yeah, just that idea that I don't have to explain this to anybody in this room, right? They know how. I feel, yeah, and then that, that kind of feeling of, what does it feel? Supported?

Sarah 1:00:05
Supported? Yes, I would say understood. Is a big one. Have

Scott Benner 1:00:10
you ever seen the movie, Rudy? I know you said you don't watch movies you've seen Rudy, okay, right? Awesome. At the end, when they let Rudy play, it makes me very happy. Like, right? Like, but I'm not happy for Rudy, like, like, there's something about the adulation of a group of people, or the support of a group of people, or what you're talking about, like, the understanding of what this means to Rudy to go into the game. I can't believe there's so much football on this episode. Yeah, there's something about that that makes that feeling very powerful. Yeah, I would take an entire college course to understand that feeling, because it is so incredibly impactful when you have that around you. And the problem is, if you've never been through something like this before, or you're maybe a bit of an isolationist to begin with, when someone tells you how important community is you could be like, Oh, that's stupid. It freed you up by imagining, I imagine being in that room for that hour changed you somehow, yeah, yeah, yeah, okay, well, I'm super happy that you were there and we met while you were there. Is that, right? Yes, yeah, that's awesome. I have such a good time at their thing. Yeah, they do a really great job. And you

Sarah 1:01:22
traveled to get there. Yeah, we flew for Missouri.

Scott Benner 1:01:26
I remember, I believe I remember you telling me that, and I wanted to go to Sea World out the deal. So, yeah, just an overwhelming thing to have somebody tell you they flew somewhere to see you. You know what I mean? Like, I once had somebody tell me they drove 15 hours to go to a thing I was speaking at, I was like, I don't think I drive from you NO and NO, and I appreciate that, because I when they said it, I was like, why? Like, I was like, my god,

Sarah 1:01:47
so much effort. They must have been scared of planes. I would have

Scott Benner 1:01:51
called you on the phone, like, if you needed to talk to me that badly. All right. Well, I really appreciate you doing this. Can you hold on for a second? Yeah. Thanks.

The conversation you just heard was sponsored by touched by type one. Check them out please. At touched by type one.org, on Instagram and Facebook, you're gonna love them. I love them. They're helping so many people. At touched by type one.org. Thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night. Whether it's their meal detection technology or the Medtronic extended infusion set. It all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juice box. I'd like to thank the ever since 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. 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 podcast 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 if your loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox Podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juicebox Podcast, the bold beginning series and all of the collections in the Juicebox Podcast are available in your audio app and at Juicebox podcast.com in the menu, the episode you just heard was professionally edited by wrong way recording, wrong way recording.com you.

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Scott Benner 5/7/25 Scott Benner 5/7/25

#1515 Shay and the Motorcycle

Shay, 27, was diagnosed with type 1 diabetes at 8 and now juggles multiple autoimmune conditions—Addison’s, endometriosis, Raynaud’s, and more. When she’s not managing her health, she’s riding motorcycles.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox Podcast. Welcome.

Shay 0:13
My name is Shay, and I was diagnosed with type one diabetes in 2006 so I would have been eight years old. Nothing

Scott Benner 0:22
you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure you check out drink A, G, one.com/juice box. To get this offer, don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com 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 Today's episode is sponsored by the tandem Moby system with control iq plus technology. If you are looking for the only system with auto Bolus, multiple wear options and full control from your personal iPhone, you're looking for tandems, newest pump and algorithm. Use my link to support the podcast, tandem diabetes.com/juice, box. Check it out. I'm having an on body vibe alert. This episode of the juice box podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox

Shay 2:32
My name is Shay. I'm actually turning 27 tomorrow.

Scott Benner 2:36
Happy birthday. Thank you. And

Shay 2:38
I was diagnosed with type one diabetes in 2006 so I would have been eight years old. Eight years old. You're going

Scott Benner 2:46
to be 20, just about 20 years Yep, wow. One of my daughter's good friends when they were youngest named Shay. So it's gonna, oh, that's cool, yeah, not spayed, not spelled the same way. Hers is spelled after the stadium. Oh, okay, yeah, it's a different name, though, isn't it yours?

Shay 3:01
Yeah, it is. I don't see it that often. I was gonna say I don't either.

Scott Benner 3:05
It took me by surprise when it popped up in front of me. So diagnosed as a child, you're in your late, you know, mid to late 20s. Now, I'm sure you don't think of it as your late 20s, no. But what's it been like having type one?

Shay 3:18
Well, it was a lot different back then, before technology got so good. So I'd say for the first 510, years was pretty rough for me. I was doing probably 20 injections or more a day, and just really struggling to keep it kind of even it was, I'm always like, up and down back then, and this was when Dexcom, I think they were on, like the g4 when I started, or g3

Scott Benner 3:55
Did you have a Dexcom from The beginning? No, no, I did.

Shay 3:59
Finger prick for years, and then when they couldn't get me under control, then they were like, Okay, your blood sugars and your a 1c is bad enough. Your insurance will cover a pump and a Dexcom. And I was really scared. I mean, I I forget how old I was, but I think I was maybe 12 or 13, and I was just like, I don't want something attached to me all the time.

Scott Benner 4:26
I was gonna say, tell me what was scary about it. It was hard for me

Shay 4:30
to be okay with being like, different than kids around me. Yeah. So I would always hide the fact that I was diabetic. So it just terrified me that people would be able to see that. I guess something was different about me, just based off of stuff, like hanging on me and that mixed with, like, the technology just kind of overwhelmed me.

Scott Benner 4:53
Were you managing mostly on your own? Yeah,

Shay 4:57
that's the thing. My parents were. Very involved with my care. And it was kind of like they taught us food groups and stuff like that. And then they were, my parents were like, Okay, you can figure this out. So,

Scott Benner 5:11
Shay, let me ask you, like, were you figuring it out? Like, did you have, like, awesome, a one, CS, No, you were up and down all the time, right? No,

Shay 5:19
yeah, it was horrible. I didn't know what I was doing. I the only thing I remember from that class, when I was eight, when they found out, was that they used fake fruit. I don't remember any information like, I just remember visuals of the fake fruit and being like, scared and nervous and not knowing what was going on. Oh, literally, like someone

Scott Benner 5:39
held a fake banana up in front of you. It's like, if you're bolusing for a banana, it might be this many carbs, and that's your recollection exactly how it went. Did your parents know that? I'm so sorry to ask like this, but were they like, did they just abandon you on this? Or did they not know you were struggling?

Shay 5:55
Yeah, they kind of just didn't want to deal with it.

Scott Benner 5:59
Were you super excited to deal with it. No,

Shay 6:01
I was just confused and yeah, lost, but yeah, even to this day, they they don't know the difference between, like a Dexcom and an Omnipod. So I'm so sorry

Scott Benner 6:13
to go down this road, but I want to understand, do you have other other siblings? Yeah,

Shay 6:16
I have a brother that's 11 months older, but he has no health problems at all. Are they involved in his stuff? Yeah, he I guess so they kind of resented me for having health problems and kind of blamed me for being so expensive, I guess. Really, yeah, so I just didn't have a good childhood in general. So I really was, like, completely alone through the diabetes and the diagnosis at eight years

Scott Benner 6:44
old. What's your relationship with your parents like now?

Shay 6:47
I always see them every once in a while, so I don't see them too often, but getting married soon and gradually, my mom went with me to try on wedding dresses, and she asked me if I was going to hide my Dexcom and my pump because it looked bad with

Scott Benner 7:06
the dress right back in the game. Mom was, huh,

Shay 7:09
yeah, yeah. So I'm like, Yeah, that's typical. Listen, I

Scott Benner 7:13
feel bad saying this, but are your parents generally heads, or is it just about this?

Shay 7:17
They just weren't good parents to begin with. I think, yeah, how come? Do you believe? I don't think they were ready to have kids, and they planned my brother, but obviously, 11 months later, they didn't plan me.

Scott Benner 7:32
You were the hey, you know, we haven't had sex in a while, baby. Yeah, I was the oops. Well, that's first of all, listen, you don't need me to, you know, say I'm sorry, but that sucks. I I'm sorry. It's a perspective that I think a lot of people have and don't share very often, so it's very nice of you to spend time talking about it so you don't dislike your parents or anything like that. You're just not particularly close with them. Yeah,

Shay 7:53
I mean, I was upset with them for a while, but it's just kind of the way it is. So there's no point in getting upset when I know they're going to be like that about my health. Yeah,

Scott Benner 8:04
somebody once told me that you can't ask more of people than they have to give. Yeah, that's pretty much it. You're not harboring any resentment, but you do believe that if it wasn't for diabetes, do you think you'd have a different relationship with them, or do you think they would just have found another thing to be upset about and because they weren't really looking to be parents? Yeah,

Shay 8:25
I think it would have been negative no matter what, but it did. It put such a damper on, like, taking care of myself, because I was constantly worried about what people were gonna say or think about me, because my parents weren't great with it, so I never, like, truly embraced it and wanted to hide it as much as I could, because

Scott Benner 8:46
if people realize you have diabetes, somehow the conversation leads to the fact that you're alone in all this, and then you have to tell people you don't have parents that seem to give a about you. Yeah, pretty much. How old were you when you thought about it that way? Like, gosh, they don't care enough about me to, like, help me with this. I

Shay 9:03
kind of caught on even at eight years old, because I had to give myself my own injections. And it's crazy. I look at eight year olds now and I'm like, that was me, but giving myself injections and keeping myself alive and not knowing what I was doing, yeah,

Scott Benner 9:20
there's a balance, obviously, between letting kids fumble around and grow, and I'm for that, you know, but not on this thing. Like, this is a weird place to like, you know, there's stuff like, my kids will come to me and they'll be like, What do you think of this? I'm like, you'll figure it out, don't worry. And you want them to, like, live through it and figure it out. But not when you're eight, right? Not to me, at least I it's just not how I think about it, I guess.

Shay 9:44
Yeah, and there's nobody in my family that's type one at all, so I don't know anybody. Yeah,

Scott Benner 9:50
you wouldn't have anybody to ask, right? Jeez. So, okay, so we're back to being 12 or 13. Things are bad enough that they're like, You got to use this game. Year you're like, oh God, if somebody's gonna see it, I see where that comes from. Because, you know, 15 years later, your mom's like, oh gosh, you're not gonna let anybody see this. Are you, yeah, but you get the stuff anyway. Does it end up helping? Why would you settle for changing your CGM every few weeks when you can have 365 days of reliable glucose data? Today's episode is sponsored by the ever since 365 it is the only CGM with a tiny sensor that lasts a full year sitting comfortably under your skin with no more frequent sensor changes and essentially no compression lows. For one year, you'll get your CGM data in real time on your phone, smart watch, Android or iOS, even an Apple Watch, predictive high and low alerts let you know where your glucose is headed before it gets there. So there's no surprises, just confidence, and you can instantly share that data with your healthcare provider or your family. You're going to get one year of reliable data without all those sensor changes, that's the ever sense. 365 gentle on your skin, strong for your life. One sensor a year, that gives you one less thing to worry about. Head now to ever sense, cgm.com/juicebox, to get started. Let's talk about the tandem Moby insulin pump from today's sponsor, tandem diabetes care, their newest algorithm control iq plus technology and the new tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto Bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandem Moby gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandem diabetes.com/juicebox when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about tandems, tiny pump that's big on control tandem diabetes.com/juicebox, the tandem Moby system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up In range and address high blood sugars with auto Bolus.

Shay 12:23
Yeah, it completely, like changed my life, pretty much. At first it was, it wasn't like an automatic fix, but it took a while to learn, like the settings and because they didn't have closed loop back then, so we had to really be strict with the settings and everything, which my parents would take me to the endocrinologist, but they wouldn't like, they would wait outside. They wouldn't wait, wait,

Scott Benner 12:49
get the out of here, really, yeah,

Unknown Speaker 12:52
like, they pretty much just dropped me off. You're 12

Scott Benner 12:55
years old, and your parents would like, dump you out on the curb and then go get cigarettes and come back for you an hour later. Just

Shay 13:02
wait in the car. Yeah? Oh, my God, that's terrible.

Scott Benner 13:05
Yeah. I was in the car the other day with my son, and we were leaving a mall situation, and there was this old man, like, parked, like, in the fire lane by the mall, you know, just sitting there smoking a cigarette, waiting clearly, for his wife, who he, like, wouldn't have gone into a mall for for anything, you know? Yeah, I said, Gosh, when I was young, I pointed to him, and I said, when I was young, guys did this all the time, like, they'd sit outside of grocery stores, they'd sit outside of like, malls, or, like, I'm not going in there, and they just sit in their car. And my son was like, really? And I was like, hey, because I hate going to the mall, but he's like, but, you know, I go in when my my girlfriend goes, and I was like, right, right? But this old man was just, like, such a, like, a throwback to another time, like, just like that. Like, you go do it, and I'll wait here. You go do woman things, and I'll sit in the car. But they did that to you when you were a kid. Yeah, that's enough shape at the time. Did you know, like, did 12 year old Shay walk in there going, like, man, I've got crappy parents. Or are you just, like, I'm brave. I can do this on my own. Like, how does it feel to you? I

Shay 14:10
thought it was normal then, like, I really didn't see anything wrong with it until I was, like, closer to friends and talking to them and seeing how their parents were, yeah, I was like, wow, mine are not involved in anything I do at all.

Scott Benner 14:26
Did the doctor ever say to you, where are your parents? Yeah, I would just be like, Oh, they're waiting

Shay 14:30
outside and they don't want to talk.

Scott Benner 14:33
Shay, you realize now, like, if you do even the tiniest good thing as a parent, one day you're going to be like, I'm so good at this. Yeah, right. Try not to tell your kids that kind of stuff. Don't. Don't do the um, like, you're lucky. I'm doing this. My mom wouldn't even go into the doctor's appointment with me because I found myself telling my kids at times. I'm like, Oh, my God, you have no idea. The 70s, somebody would have kicked your ass for that, but that's for but you're younger, though. How old are your parents now? They're

Shay 15:00
in their 50s, really? Yeah, wow.

Scott Benner 15:03
All right, listen my last question about your parents, then we move on, unless they come up again, drinkers, drugs, anything like that.

Shay 15:10
Yeah? My dad, heavy drinker. My mom, she has, like, mental health problems. So, like, what she is, bipolar, I think type one. So she has all these medications she takes, and sometimes she gets, like, manic and stuff like that.

Scott Benner 15:27
I say they were challenged too. Then, yeah, yeah. How about you? Do you have anything else besides the type one? Oh, yeah, I have a list. Go ahead. What is it? So

Shay 15:35
I have endometriosis, which I got surgery for two months ago, and they found out it's stage four. So it was really extensive, Hashimotos, Raynaud's disease and Addison's disease. Holy Hell

Scott Benner 15:50
yeah. How does the endometriosis present? So

Shay 15:55
I had been in like, debilitating pain for like, years, and no doctor would listen to me. They just wanted to give me birth control, or, you know, tell me just eat better, or don't eat this. And nothing helped. I was in pain so much I just couldn't deal with it anymore. So I finally got someone to listen to me and said they would go in, and while they're looking, they would remove anything they needed to. So that turned up as a three hour surgery, which was supposed to be 45 minutes long. Yeah, so when they got in there, they saw it was a lot worse than they expected, and ended up getting it all out. So I've been doing really good, a lot better so far explain

Scott Benner 16:41
endometriosis to people. What were they in there looking for? So

Shay 16:45
it's like, your uterine tissue, like grows on the outside and grows on other organs, and then it causes really bad pain and other issues, because it's like growing on the nerves and I had organs attached to each other because of this, so they had to go in and cut them free.

Scott Benner 17:07
Will this happen again? They

Shay 17:09
said there's a 60% chance of it coming back within five years. But I'm pretty hopeful, because I'm really healthy and I do a lot of healthy eating and exercise, so I'm hoping that'll help. But I know that doesn't always keep it

Scott Benner 17:26
away, and if it doesn't, then the idea is they go back in and hack away again.

Shay 17:31
Yeah, pretty much do it all over again. Jesus, that

Scott Benner 17:35
sucks. Is this gonna impact you having kids? Yeah,

Shay 17:38
they said I have some like, blockage of my, like, fallopian tubes and stuff like that, so they're not sure, but I'm not that interested in having kids anyway. Oh, why not? It's just not for me. I

Scott Benner 17:54
met you know I was making fun of your parents. Is there any other like bipolar in your family is your mom the only one? Yeah,

Shay 18:03
just my mom, my dad's family. We don't know them because he's adopted. So,

Scott Benner 18:10
jeez. Well, what a show, yeah? What made you want to come on the podcast? Maybe

Shay 18:16
there's other people with just as much as a show, has me that would want to hear

Scott Benner 18:22
it. There definitely is, Shay, don't worry. Yeah, you came to the right place. Yeah? There's plenty of people out there right now going, I have all that stuff. Yeah, Hashimotos, you manage just with like Synthroid that i

Shay 18:37
They've told me for probably the whole 20 years now that I have Hashimotos, but I still don't need

Scott Benner 18:44
medication for it. What is your TSH, when they test it,

Shay 18:47
that's a good question. They do test it probably once every six months for me, and it's fine every time. So they just tell you, it's in range. Yeah, it's sometimes it's borderline, but they still say, I don't need the medication yet. Do

Scott Benner 19:01
you have any symptoms of it? Are you tired? Does your hair fall out? Are you cold? Like anything like that?

Shay 19:08
I'm constantly tired, but I feel like that's because I have so many different auto immune issues, and then I am always cold, but I have anemia, so I it's, it's like, I'm not sure what is causing this symptom today, kind of thing. We're gonna

Scott Benner 19:24
get you all straightened out today. Okay. Do you have access to your labs? Yeah, I do you get them all right. Cool. We'll keep talking. So what about the anemia? Did they ever give you? Did they ever do a full iron panel? Do you know what your pattern level is? So all

Shay 19:39
they told me was that it was low, and this was at my endocrinologist, and they weren't sure like what to tell me for milligrams of iron to take every day and that I needed to go to my primary care physician for that awesome. So I just thought that was so ridiculous.

Scott Benner 19:58
What a great help they are. Yeah. We'll figure it all out together. Don't worry. So your ferritin is low, your eye your iron panels came back abnormal. They didn't give you anything for it. Told you to go to talk to a different doctor about taking an iron tablet, which you're not going to do. Do you have heavy bleeding around your menstruation? Yeah,

Shay 20:12
like so much that I would faint and stuff like that, which it's been better since the surgery. But, yeah,

Scott Benner 20:20
okay. How about your digestion? Does the food go in and come out the way you want it to? Or do

Shay 20:24
you have I have horrible digestion problems, and they can't figure it out. It's been pretty much like six months. We've been trying to figure out what's going on with my stomach. And I don't eat much at all because everything hurts. Food

Scott Benner 20:40
goes in. You have pain in your stomach. You don't eliminate every day that kind of stuff.

Shay 20:45
Yeah, it's more like constant diarrhea no matter what I eat. Awesome. Okay, yeah, yep,

Scott Benner 20:53
I'm not laughing at you. It's just horrible. So I'm gonna guess that the diarrhea is about the thyroid that nobody's helping you with. Probably tell me when you have your when you have your labs in front of you.

Shay 21:06
Oh, okay, one second. Yeah, I also the Addison's disease, which is pretty rare for humans to get. I mean, dogs get it all the time, but humans don't get Addison's disease much, so that took forever for them to figure out what it was, and no one believed me. I was down to, I'm five seven, so I'm pretty tall for a girl, but I was down to, like, 95 pounds. Oh, wow,

Scott Benner 21:33
my daughter is five seven, so sick. Yeah, you know how thin she'd be if she was 95 pounds. We've had people on that have Addison's. There's a great person in the group that has it. So there's people that we could kind of hook you up with too to try to find, yeah, that'd be cool. But dig out your labs and I'm gonna find I have them. Okay, your last TSH was,

Unknown Speaker 21:57
what? 2.65

Scott Benner 22:01
okay? And your ferritin under the iron panel, 37.4

Unknown Speaker 22:09
Ng, slash, ml, yeah, yeah,

Scott Benner 22:11
okay. How would you like to feel insanely better in a month? That would be eight. Awesome. Here's how we're going to do it. Your TSH is too high, your ferritin is too low. Now you have insurance, awesome. You want thyroid replacement hormone. You want to tell your doctor that you want to medicate. Your TSH to under two you have thyroid symptoms. And I don't care if the test tells me I'm in range, I know that if I can medicate my TSH under two that a lot of my thyroid symptoms will go away. And then list all of your thyroid symptoms for them. Okay, okay, then you have to make an appointment with your general practitioner and tell them that you have significant low iron symptoms, for instance, general fatigue and weakness, definitely, persistent tiredness, definitely you have muscle weakness. Yes, you feel sluggish or drained. Yep, you experience brain fog, dizziness, lightheadedness, mood swings, irritability or increased anxiety or depression, all of those. Okay. Do you have shortness of breath when you mildly exert yourself? Yes, a rapid heartbeat, cold hands and feet. Yep. Is your skin pale sometimes? Yeah. Are your nails brittle? Yes? Have you experienced hair thinning? No. Do you bruise easily? Yes. Do you chew ice? Yeah, actually, uh huh, frequent infection, slow healing, restless legs, especially at night.

Shay 23:49
Oh my gosh, yes, the restless legs. For sure, you have

Scott Benner 23:52
low ferritin. So I want you to tell your doctor that you want your ferritin level to be at least 70, but you'd prefer it to be higher, and you would like to get iron infusions. Okay, you're gonna have to go to a hematologist, and the hematologist is going to be where you get the infusions, depending on what your insurance will cover, you'll either get like, two infusions, one a week apart, or you'll get five, depending on the medication, like a week apart, you'll then have the iron in your system that your system needs, and the next time your blood cells regenerate. So what's happening is your blood cells are being regenerated, but you don't have enough iron to build them properly, and that's why you're having the problems you're having. So then your red blood cells will get regenerated properly, and all of that will just go away. Interesting. It's incredibly possible that you might not need the thyroid medication, that getting your iron up, your ferritin level up, might take care of the things that look like thyroid symptoms. But having said that, also know that bad iron also impacts your thyroid. Numbers. Low ferritin can impact thyroid function, particularly TSH thyroid stimulating hormone levels, but the duration of the effect depends, so that's why it's bouncing around on you. So low thyroid can lead to a higher TSH level. Oh, okay, that may be why your TSH is bouncing around. So I'm gonna say, based on everything you've said so far, and the fact that I am not a doctor, I barely got out of high school, and I only have a podcast. I am going to say to you that if you get your ferritin raised through an iron infusion, that it's possible that the next time they check your TSH, it will look better.

Shay 25:34
Okay, yeah, I know a lot of Addison's people need to get infusions too. So that makes total sense, yeah, except

Scott Benner 25:43
nobody's helping you with it, which is, of course, being an enemy. Yeah? Would this impact

Unknown Speaker 25:52
bow habits, low

Scott Benner 25:54
far Can, can absolutely impact bowel habits, including causing loose stools or increased bowel movements. Yeah, you are literally a few infusions away from all this going away. That's

Shay 26:04
crazy. I feel like my endocrinologist just doesn't want to listen at all.

Scott Benner 26:09
Yeah, skip them, go right through a hematologist, okay, yeah, that's a good idea also, because when you have low ferritin, you're going to get poor nutritional absorption, right?

Shay 26:20
Yeah, I am very vitamin deficient and like, vitamin D, um, think it was vitamin

Scott Benner 26:27
E. Your food's not being absorbed correctly, makes sense. Yeah, they're gonna say, Well, why don't we try taking an iron supplement? And you go, like this, uh, no, okay, because that'll take too long, my numbers are too low, and I'm not waiting a year to maybe raise my ferritin level 20 points, yeah, I want to get jacked back up again, like, yeah, and then you got to get it checked again, because the sadness here is Shay. If you don't figure out why this is happening, your iron levels are going to drop back down again. Now, if they were because of heavy, excessive periods, are you still getting excessive periods? No, not like that anymore. So it's possible you get jacked up one time. Your body starts absorbing your nutrients better and the minerals that you need, you're not bleeding as heavy, and all this clears up. And then you, one day, decide to buy a puppy, and you name it, Scott, because you're so thrilled with how much I've helped.

Unknown Speaker 27:22
Yeah, sounds like a plan. All right, let's do it,

Scott Benner 27:25
and don't take no for an answer. You're young, so let me tell you that. Just don't let them tell you no. Yeah, okay. You know what to tell them. You know how to how to make this happen. Yeah?

Shay 27:35
I mean, I'm gonna write all my symptoms down and tell them I have been taking iron pills, but I feel like they don't do anything. Really haven't been

Scott Benner 27:44
Oh, yeah. Oh, if you've been taking them to say, look, I've been taking these, they don't do Yeah, I need the juice. Give me the juice. That's what you say. Give me juice. I'm telling you. Like, if you have great insurance, it might cover something called injector, which you'll probably just need to get twice. If your insurance is a bunch of cheapskates, I think they're gonna give you something called Benner for maybe I forget the names. Exactly one of them, you have to take more frequently to get the same thing. But the good news is, is that there are infusion centers everywhere, and so, like, it's not really hard to, like, you just go into infusion center. They pop into your vein real quick. It takes 30 minutes to put the stuff in, and you're on your way.

Shay 28:18
Yeah, that's not bad at all, no, especially if I can feel better, it's not

Scott Benner 28:22
gonna be like eating a cheeseburger and afterwards you're like, that was satisfying. Like, you know, you're not gonna feel any different that day. But I'm telling you, like, once your red blood cells cycle one time with the proper amount of iron in your system, you're gonna be like, Oh my god, I can't believe how much better I feel. Yeah, well, now I'm excited. Yeah, good, excellent. Well, yeah, listen, I've now done more for you than your parents. Yeah, right. All right, tell me more about this. Addison, so how long have you had this diagnosis?

Shay 28:50
I got diagnosed in 2020, in January. Okay, so it's been five years. Um, like I said, I was really sick for a long time. No one could figure it out. I mean, I couldn't even stretch in the morning without collapsing and just being so out of breath from just from stretching, and I couldn't keep anything down. I would throw up every morning after waking up. And I brought these concerns to my endocrinologist, and they said, Oh, maybe you're pregnant. I said, I'm definitely not pregnant, but all they did was get me a pregnancy test and say, Well, you're not pregnant, so we're not sure. Everything else looks fine.

Scott Benner 29:35
Everybody sucks, especially in your life, Shay, yeah, but everybody, everybody just sucks. Can you give me, generally speaking, where you live in the country, Central

Shay 29:43
Pennsylvania. Oh, I know the area,

Scott Benner 29:47
yeah, all right, I'm not totally surprised. Okay, you're so close to good health care too. I know, right, yeah. Could just go a little towards Pittsburgh, a little towards Philly, you'd be okay, but you're stuck right in the middle. There.

Shay 29:59
You. Yeah, yes, Pittsburgh and Philly, they're over three hours away from me. Yeah, you're literally

Scott Benner 30:05
right in the middle. Yeah, gotcha. There's got to be somebody who can help you. And I think you just have to take it upon Listen, I know that after stuff like this happens over and over again, it gets defeating and frustrating, and you think, like, oh, somebody says no, and you just kind of give up. But trust me, if you get this iron infusion, it's going to rectify a lot of different problems for

Shay 30:26
you. Yeah, I've been just going, Okay, I guess whenever they say, we can't figure anything out, because I've I feel like hopeless, like, what else am I going to say to them to get them to believe me and look into it more? You

Scott Benner 30:40
don't need them to believe you. You need the iron like, yeah, in the form of an infusion, and you're gonna be so much better. I mean, honestly, like, we can sit here and be angry. It is very frustrating to me that somebody doesn't see a ferritin of 37 and all of your symptoms and go, oh gosh, you need an iron infusion. Like, I can't believe somebody didn't say that. But I guess we can't count on, I don't know. Maybe we can't count on people to do their jobs all the time, or to know what their jobs are. But they the Addison's is crazy. What do they do for that? So

Shay 31:10
I take hydro cortisone, so steroids and pill form every day. Take them morning, afternoon and night, and then, of course, I have to take more if I'm, like, under a lot of stress or doing a lot of exercise and stuff like that, because my body doesn't produce cortisol itself, so I'm basically giving it cortisol when it needs it, and just guessing when I need it. That's

Scott Benner 31:38
a, I would say, a crap shoot, too, right? Even understanding it's

Shay 31:42
really it was really hard to figure out at first, especially like when I turned 21 and drinking, I really struggled, and ended up in the hospital like two or three times because I just didn't know how to co exist and still go out and have fun with all my health problems, because with Addison's disease, you need a lot of sodium, and I constantly have low sodium. So if I'm not keeping up with, like, sodium and water intake, and it's like, all a balance game, then I get really sick fast, and then it goes downhill from there. Yeah, I'm

Scott Benner 32:18
sorry. I know it's not an easy thing, obviously, auto immune. So you have, we don't even know about the rest of it, like we can't even talk about your digestion until you maybe get the iron address.

Shay 32:32
Yeah, they had thought it might be celiac disease, but it's not. I don't know. It came back negative, but at that point, I hadn't had any gluten for months, so that could have impacted the test too.

Scott Benner 32:45
Yeah, do you think that's a consideration? I

Shay 32:48
guess it's common, but I feel better not eating gluten, but that could be in general, because you're eating less diabetes anyway, or celiac disease. I'd be

Scott Benner 33:00
so super interested just to see what the iron does for you again. Because also, like, I mean, there's obviously overlapping stuff with Addison's low iron and thyroid, like the fatigue, your low weight, that could be a couple of different things, even the like, any irritability, muscle weakness, depression, that kind of stuff could overlap through all those things, which is what makes some of these autoimmune issues so terrible, like, they all look like each other. So, yeah,

Shay 33:27
exactly. It's so hard to tell what is giving me which symptom,

Scott Benner 33:32
yeah, but I would say that the iron is a good first step, because it's outside of these other two issues, outside of Addison's or possibly Hashimotos, like, right? And you can address it, and you will know, like I said, You'll know in four to six weeks if it was helpful. Yeah,

Shay 33:49
yeah, I'm definitely like, getting on this today. Good,

Scott Benner 33:53
good. I'm glad. What else should we talk about? What else you got on your list over

Shay 33:56
there? Well, I have kind of a horror story, awesome of the hospital a couple months ago. So Shay,

Scott Benner 34:04
you're the podcast guest that keeps on giving. Go ahead. What happened?

Shay 34:09
So this was for my endometriosis surgery. This was my first surgery ever. I've never been like, put under for surgery before, and when you're put under you need extra steroids for the Addison's disease. Well, they gave me extra during the surgery, and then when I woke up, the team called My endocrinologist and asked if they should give me more. And they said, No, I was unaware of this, obviously, because I just got surgery and was so out of it. Well, they sent me home the same day, and I got home, took a nap, woke up, had to go pee, went pee, and immediately just passed out on the bathroom floor because I was in so much pain and was just drenched in sweat. I had no idea what my. Blood sugars were luckily, my fiance is really good with blood sugars, and was looking at them for me, but it hurt so bad. I just I couldn't stand up. I was on the floor and couldn't keep anything down, not even water. So I had to be taken back by ambulance, which they told us to go to the ER, well, they made us wait four to five hours, so I couldn't keep my medication down. At this point, my blood sugar was running extremely low because I could. I hadn't had food in so long, and I couldn't. Since I couldn't keep things down, I had no pain pills in my system and this, and I'm fresh out of surgery, right? So this was like the worst pain I've ever felt, and they made us wait so long I was passing out on the hospital floor, and we made like a little bed in a really wide window, so for me to try to get some sleep, and it was horrible, but I feel like if they just would have given me more medication, then I wouldn't have had to go back and be in that situation. You think it was an adrenal crisis that you're at? Yeah, it definitely sent me into crisis, for sure. So I felt kind of like, if my endocrinologist can't tell them the the proper thing to do. Like, I really am alone in this.

Scott Benner 36:23
Yeah, no kidding, I guess, talk about that for a second. Like you have a number of different competing issues. The loneliness. Is it a thing you can over match, or is it too much to get over?

Shay 36:35
Yeah, it's really tough. Like, I've just been starting to go to therapy recently, which she's the one that told me about the Juicebox Podcast. So your therapist did, yeah, she did, yep, awesome. And yeah, it's really difficult, because having all these health problems like so young, everyone looks at me and assumes I'm healthy, or if I don't feel well, they think I'm exaggerating, because I look perfectly fine, but it's really hard, like, just to be feeling decent for one day,

Scott Benner 37:07
yeah? And so it's just a struggle to feel normal,

Shay 37:11
yeah, pretty much. And then, of course, it gives me anxiety going out of the house, like, what if my blood sugar drops? What if I need a bunch of salt? What if I start getting shaky, or I don't feel good, or I feel pain? So for a while, I would just stay in my house a lot and not go out. But I've been working on that, like I said, with my therapist.

Scott Benner 37:35
Also, I have to tell you, I mean, the Addison's, the possibility of thyroid and the low ferritin, these are all things that could make anxiety worse?

Shay 37:42
Yeah, definitely. The Addison's disease too. The anxiety gets really bad when I need extra medication. It's sad

Scott Benner 37:51
because you're young, you know what I mean, and you've been through a lot already. We've been doing a good job of laughing about it, but you had a pretty crappy start, and then, you know, you've had these issues and the endometriosis, would you say was stage four, yeah. And then, you know, you're in pain for years, and people don't like appreciate that. You don't mean pain once in a while. You mean pain constantly,

Shay 38:12
yeah? 24/7 pain for years and years, yeah?

Scott Benner 38:16
And then, you know, and then on top of that, the low iron and all that comes with that one. It's a lot, and you're on your own too, because I'm sure you have friends. It sounds like you met a boy, which is nice. It's a lot. You know what? I mean? Like to not have parents to go talk to or somebody to get your back. So glad you found the therapist. That's awesome, too. Yeah. How did you know to do that? To go to a therapist like it doesn't sound like you you grew up in an enlightened household, so I'm wondering who, like, where did you think

Shay 38:43
to do that? I guess I was just tired of feeling the same way all the time, like, just feeling like crap about myself really, like, Why do I it was always like, Why me? Why do I have to deal with these health problems? Until I was like, you know, I can change my outlook and how I look at things, and I've been through a lot, and that just means that I'm stronger than most people dealing with all of this at the same time, too.

Scott Benner 39:13
Sounds like it? Yeah, it really does. Okay. So you just were like, I need help from somewhere, and I don't know, like, nothing's going my way. I've got to go talk to somebody. Yeah,

Shay 39:23
I was feeling really down, like, borderline suicidal over the pain I was the physical pain I was feeling every day and not thinking that it would get any better. I just, I didn't know where else to go. Yeah.

Scott Benner 39:38
Like, do you ever go to your mom? I know this is a weird question because of her situation, but did you ever go to her? Yeah,

Shay 39:44
but she, she had endometriosis as well, but that, you know, that was so long ago. They don't do it the same way now. They used to burn it off, which they still do now, but they shouldn't. They should be cutting it. Out. But yeah, if I talk to her about it, she would kind of act like she knows more than me, kind of thing, and it would just irritate me, and we would get nowhere.

Scott Benner 40:10
Gotcha, gotcha, even though you're not all the way through this. Do you feel like you're in a better place than you were a year ago?

Shay 40:16
Yeah, definitely much better than a year ago, especially because going to therapy, it's not only changing, like my mental health, but it's making me realize there's other things and steps I can do for my physical health that would make me also feel better, as in, like, making more appointments, not ignoring things and symptoms.

Scott Benner 40:41
Yeah, that's tough lesson to learn, but it sounds like you have it. Yeah, yeah. Okay. So do you think you have a doctor that you can talk to about the fart and idea? I

Shay 40:51
don't think I have one currently, but I just switched over to all new providers, so it shouldn't be an issue finding one.

Scott Benner 41:00
Yeah, if you switch providers, did you have to do a physical? Yeah,

Shay 41:04
they had me go in for a physical. And the doctor was just shocked. He was like, You're so young and you have all this going on, but great.

Scott Benner 41:14
Can you help me with it? So right, can you look and see the 37 next to the word ferritin? And think to yourself, that might be a problem, which

Shay 41:22
they're the ones that did that blood work. You said everything looked fine, yeah. So

Scott Benner 41:27
nobody knows the they're talking about, right? So why don't you how long ago was that?

Shay 41:32
That was right before my surgery? So probably four months ago, awesome.

Scott Benner 41:37
So it's pretty recent. So like, yeah, I call them back and I say, Look, I've been doing more research, and I've learned that many, many practitioners believe that a ferritin level under 70 for a menstruating female is too low. Mine's a 37 I found a bunch of people who have had the same problem. They've all had it alleviated by getting an iron infusion. I'd like you to get me an iron infusion. I've tried taking the iron tablets. They're not working. Here are all of my symptoms. I want to get my iron up to where it belongs. And I want to, you know, wait a little while, and then see how I feel. I think a lot of my my symptoms, then you list off the low iron symptoms are going to go away, and the ones that don't, that's okay, because once we know my iron is higher, now we can look to see if maybe my thyroid levels could be managed better, or if this is more about digestion and the uptake of minerals and vitamins, etc. But I think that we can't figure any of that out till I get my iron higher. I've been struggling and long enough I want to go get a an infusion. Because if they try to tell you about more iron tablets, just say, Look, they're not working. They're going to constipate me. They make me sick, like, say, whatever you got to say to get your thing. You know what I mean? Yeah, I mean,

Shay 42:57
I'm going to tell them the truth. I feel like I've tried everything to feel better, and nothing is working. I mean, I don't the amount of food I eat or don't eat, really is crazy. I barely eat anything. The only thing I eat is fruits and vegetables, sometimes beans, like, everything else just hurts my stomach and just doesn't make me feel good.

Scott Benner 43:19
Yeah, don't let them like, when they start going like, well, that could be celiac. Oh, wait a minute, that's fine. Maybe it is. But first we're going to get my iron up so we can figure something out. Like, that's what you just keep them focused, because otherwise their little brains, like seeing a like a bird, they'll pivot. You know what? I mean, they're like, Oh, what was that? Did you say? Did you say your stomach hurt, you might have celiac. Stay focused. All right. We're gonna get my iron up. After my irons up, we're gonna see how I feel, and if I still have thyroid symptoms, then I'm gonna address my TSH level like so once you get my iron back up, if my thyroids come if my labs come back, and my TSH is still over 2.1 then I'm going to ask for Synthroid to manage my thyroid better. Yeah. And then for the rest of it, I think you ought to go into the Facebook group and talk about your Addison's a little bit if you want help with it, because I think people who live with it are going to have better advice. Yeah. Okay, that's pretty much where I'm at for you. You feel good about this so far. All right, what else is on your list, like, besides, go, wait, wait. So you went to the hospital, and they did all that to you, and eventually you had to go back to the hospital. You rebounded. Okay. How long did it take them to get you back from all that?

Shay 44:30
So I didn't really finish that. I just realized, yeah, they didn't give me anything but pain pills there, and they said there was a national shortage of fluids, so they wouldn't give me fluids, because my case wasn't bad enough, even though I could not keep water down, so I was extremely dehydrated, and yeah, so they sent me home. I just remember sleeping forever, maybe a whole day I slept. Left and I woke up and still didn't feel great, but just kept taking as much extra hydrocortisone that I could, and took me about a month to fully heal enough to go back to work and get out of the house again.

Scott Benner 45:16
Incredible. They wouldn't give you fluids. Nope. They

Shay 45:20
literally said, Your case is not bad enough because we have a shortage

Scott Benner 45:24
to get just IVs. Yep, they got

Shay 45:28
none of that. I did. They never even gave me a bed to lay in. I was in one of those upright chairs just screaming in pain. He had to

Scott Benner 45:38
move a little closer to the ocean. I don't know another way. I don't know another way to put it. And listen, I want to say, as a person who's been spending the last three days thinking, I want to move a little close to the center of the country. I'm going to tell you, like, the one thing that slows me down about that is health care. Yeah, like, it really is. It's the one thing that's like, when I say to my wife, like, can we move What did I tell somebody this morning here? I'll share, I'll share directly with you. I told somebody this morning in a text message, I'm going to find the exact wording I used, because I want to be clear. Seriously, I'm sick of food people in the weather is that I think I'm officially old. And I was talking to my daughter the other day and I said, like, I don't know. Like, I'm older now, like, I'd like to just move somewhere a little less congested with people, and, you know, I'd like the weather to be a little better, like, I'm not looking for this snow. And she's like, where are you gonna go? And I was like, I have no idea. Like, I talked about it, but places. And in the end, I said, I'm not gonna do it, though. And she said, why? And I was like, healthcare. Like, I'm just, like, I talked to too many people were like, telling me stories. I'm like, where are you at? And you're like, I'm in and they always list the places that I think it would be cool to go live, right? You know, like, I'm older, so what am I going to get there? Need health care and have somebody look at a lab, see a 37 Fer, and go, This looks awesome. Yeah, yeah. Are you sure? Because I'm dying. You sure there's nothing on here that doesn't like? Do you have any idea what you're looking you're looking at? They go, Nope, you're good. All the stuffs green. Like, you know what I mean? Like, yeah, awesome. So anyway,

Shay 47:10
we, we say the same stuff pretty much every day, because we did a trip in Europe, and it's so completely different. And we're like, we want to just go live over there. Listen,

Scott Benner 47:19
I would like a little bit of land, not a lot, right? I'd like, can I tell you what I want? I just

Shay 47:25
want a greenhouse. Oh, yeah, I would love that. I just

Scott Benner 47:29
a little greenhouse on my property where I could put my plants when it gets cold. Like, that's really all I want, like, a little bit of grass, the mess around in, like, you know what I mean? Like, a place where I walk outside I don't see another person. That's good. I don't want to be attacked by a bear or rattlesnake or anything like that. Like, I just want to, like, you know what I mean, and it's okay if it gets cool in the winter, but I don't need it snowing anymore tonight. I don't know where that place is, though. Like, some people will tell you, Oh, here's perfect. I'm like, great. It's like a million dollars to rent, like, a four foot apartment, right? Great, that's not what I want, either. So I think I'm stuck, you know what I mean, but you live in that. You live right through the like, that mountain range goes up through Pennsylvania. People don't even realize that, I would imagine, but, yeah, you're probably like, in one of those, like, horrible weather gullies, like, we're the way, yes, we are. You just found the podcast. How long ago? Maybe, like, a month ago? How'd you get on the podcast so quickly? My

Shay 48:28
therapist told me about it, so I started listening to you guys, like every day at work. And then I was like, maybe I can be on it. So I messaged you, and now we're here. I got

Scott Benner 48:40
you. I'm quick. How about that? Look at me. I'm glad you're here. Your story is insane, you know, really upsetting. How does the boy work out with all the health issues? Oh,

Shay 48:51
he's great. I have no complaints. He's a pro with diabetes stuff. Now he'll stay up late when I go to bed early to make sure I don't go low or anything, because I don't wake up to my alarms. So yeah, he's really good with everything, and it kind of radicalized him in a way, because he always thought that, you know, you don't feel good, you're sick, you go the doctor, they'll fix you, yeah, until he saw being with me and going to all these doctors appointments, and not one of them listening to me now he truly sees like, wow, they really do fail people every day.

Scott Benner 49:30
Yeah. I mean, listen, there's plenty of good doctors. You're just not finding them.

Shay 49:33
Yeah, exactly. Seriously, Katie, you and I, I'm

Scott Benner 49:38
sorry I'm picking around on the internet now I think you're riding the same motorcycle I used to ride. Ah, yeah,

Unknown Speaker 49:43
now I have a GSX 8r and an SV, 650

Scott Benner 49:46
I used to ride a GSX r7, 50.

Shay 49:50
Oh, nice. The 8r just came out this year. Yeah. Or 2024, I should say, How long have you been riding since I was 19?

Scott Benner 49:58
No kidding. What do you like about it? Well,

Shay 50:01
I really started to ride because the gas prices were crazy at the time, yeah, and I had to commute to college. I was like, I'm just gonna get a motorcycle. It's gonna be cheaper. And then I fell in love with it. And I've been working at motorcycle shops for since I was 19. No kidding, so I just let just, I love it. It's just the freedom you can really like, just take your bike and just ride somewhere and find cool spots to just hang out. Yeah?

Scott Benner 50:28
I agree with you. I am. I got my first motorcycle because I couldn't afford car insurance. Yeah? So same idea, yeah. It was $100 a year to insure the motorcycle. Yeah. I remember asking the person, why is it so cheap? And they said, Ah, because if you have an accident, you'll be dead. And I was like, oh, okay, you won't need your motorcycle replace. I was like, Is that why it's so inexpensive? My gosh, I've ridden, I've owned three different bikes in my life, and I put over 100,000 miles on the three of them together. Nice, yeah. Like I rode a lot. And I just I used to ride 24/7 365, like, in the Me too. Actually, there's days I'd get up and I'd like, I gotta go to work. I gotta go to work. I gotta go to work. I'd stand next to the heater, and I'd run outside after get the bike warm, and I'd jump on and try to ride. I only like, a 15 minute ride to work. By the time I got there, I was completely frozen, yeah, and I'd get out and stand in front of another heater until I warmed up. And then on the rainy days, you had to bring clothes to change into when you got to work, because you're going to be soaked when you got there. But, yeah, I couldn't afford any I couldn't afford anything else. So, and I had the same problem. You know, eventually, what's the fastest you've ever gone? I'd say like 180 wow, I get the 165 ones. Nice. Well,

Shay 51:41
my 180 was on a track, so, oh, wasn't on the street. I was

Scott Benner 51:46
in Philadelphia, so, um, oh, my God, it was. It's very late at night. No, there's nobody else out. I just, I lost my nerve for it one day. Yeah, I get that. I can't explain it. I was such a, like a free and Easy Rider. I was fine. I went into a store one day. This is no no lies. Exactly what happened. I went into a store, I put my I parked my bike. It was really hot out, and the kick stand melted into the black top, and the bike fell over. Oh man, and I stood it up, and there was so much damage on the side of the bike, and for the first time, like, I'm not lying to you, I've been riding for years, years and years and years, and like I said, over 100,000 miles, and I saw the damage that happened, and I had been in an accident before, like I've laid a bike down, like I've been hit by a car, like I've had motorcycle accidents. But there was something about the fact that the bike fell over, did $1,000 worth of damage and was ruined, and it wasn't moving, yeah, and I thought, and it somehow, like sparked my brain to go, oh, you should wonder what would happen if you were moving. Then I started worrying about it. I couldn't stop thinking about I had to sell the bike. I could barely ride it to sell it. It was crazy, like how scared I got in the end. So I hope that never happens soon, because I miss it

Shay 53:03
a lot. Yeah, I've had accidents too. So far, I still want to ride. Yeah,

Scott Benner 53:08
I got clipped one time. This lady said she was making a left turn, and she stopped, and she had her turn signal, and I went around her on the right. She told the cop, I remembered I wanted to go right. She said, wow. So she just, without looking, turned right, caught the rear wheel of the bike, and spun the bike out from under me, like I remember going up in the air. And I remember throwing myself away from the bike. You know what I mean? Yeah, I pushed off of it, and then I came down on the side of my head of my shoulder, and I eventually had to have my shoulder replace, like, repaired years later because of the damage from that. So were you

Shay 53:47
wearing like, an armored jacket? Oh, stop it. I had

Scott Benner 53:50
a help. I was probably wearing shorts, like, I don't know, like, yeah. Like, yeah, that was that one. And then once, just after the thaw, like, you know, there's still cinders on the road, and they send the Street Sweepers out, but the street sweeper left like this thin line of cinders in the road. I hit that thin line of cinders, and the bike just like slid out from under me. I stood up in the middle of a four way intersection with cars on every side of me, and I was like, I cannot believe I didn't get hit by a car. And that's crazy. And then I looked around, I couldn't find my bike. It must have slid for like, another 40 or 50 yards after I stopped insane, and then I picked it up, got on it, and rode it home. That didn't bother me at all. Then years later, it falls over, and I'm like, I can't do this. This is too dangerous. Every spring, you know, when it's still cool, but this it gets warm, you know, in the sun, and then the air freshens up. I miss my motorcycle that time of year. Yeah, I know exactly what you mean, yeah, yeah, I really do. So, oh my gosh, yeah. Well, that bike's awesome. Both ears are really cool. Thank you. Yeah, I don't know the does your boyfriend ride with you?

Shay 54:58
Yeah? He. Rides too. He has different style bikes, though he does like the adventure style, okay? And cafe. He has two Ducatis. Nice,

Scott Benner 55:09
yeah, I rode a Harley one time, and I hated it, Yeah, same. I got back, and the guy's like, what'd you think? And I was like, I was like, sitting up so straight. And he's like, I don't know how you lay forward. I'm like, I don't know how you sit up, like that. Those bikes, the one you ride, the one that I've ridden, is they're so comfortable that I almost feel like I could go to sleep, like, like sitting on it, like I'm so comfortable in that position. Anyway, what do we not talked about that we should have? I think that's it. You sure? Would you let me know how this goes?

Unknown Speaker 55:41
Oh yeah, for sure. Yeah,

Scott Benner 55:42
I'm super interested, because I think you're gonna feel a lot better, like, I said about four to six weeks after you get an infusion.

Shay 55:48
Yeah? That gives me a lot of hope, because I'm like, I don't even know where to go at this point. Yeah, no.

Scott Benner 55:54
I mean, again I do that, then I'd wait maybe two months after my last infusion was done, and I'd get my labs drawn again, which they're going to want to do anyway. And then when they draw your labs, to look at your iron panel again, tell them, like, let's look at my my thyroid again too. Okay. And then if you see what, where your TSH goes, if your TSH goes back under two, then awesome. But if it's above, like I said 2.1 and you're still having some symptoms of hypothyroidism, that's when I would ask for that, like Synthroid or something like that, to address your T for, yeah, you know. And then once you've got those two things set up, gosh, I don't know how to say about the digestion part, but I would think the iron is going to straighten out your digestion? Yeah, I hope so, yeah. And then from there, just like, Get get on, like, vitamins and and eating a little better than you are now, because I know how you feel, because I've, by the way, the reason I know about most of this because I've had very low iron and needed iron infusions in my life. Oh, okay, I was wondering, plus people coming on the podcast, but that whole digestion, part of it, that makes sense to me, with the low iron. So I think you could have a lot of improvements again this spring. You could feel differently. Yeah, that would be great. Yeah, okay, well, I wish you a lot of luck. I hope you find somebody to help you. Yeah, thank you. You're welcome anything, nothing else. We're good, yeah, I think we're good. Awesome. I appreciate you doing this very much. Thank you for having me. Oh, it's a pleasure. Hold on one second for me. Stay with me. Okay, okay.

The podcast you just enjoyed was sponsored by tandem diabetes care. Learn more about tandems, newest automated insulin delivery system, tandem Moby, with control iq plus technology at tandem diabetes.com/juice box. There are links in the show notes and links at Juicebox Podcast com. I'd like to thank the ever since 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/juicebox, one year, one CGM.

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Scott Benner 5/6/25 Scott Benner 5/6/25

#1514 I Can Be Audacious

Kristen, 36, is a mom navigating anxiety and control while raising her 10‑year‑old son with type 1, diagnosed the same week the world shut down in 2020.

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Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox Podcast.

Kirsten is the mother of a child with type one diabetes. She has some anxiety and control issues. We talk about them today. Please 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. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure you check out drink ag one.com/juicebox to get this offer. If your loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox Podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juicebox Podcast, the bold beginning series and all of the collections in the Juicebox Podcast are available in your audio app and at Juicebox podcast.com, in the menu. US med is sponsoring this episode of The Juicebox Podcast, and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juice, box, or call 888-721-1514, use the link or the number. Get your free benefits. Check and get started today with us. Med, this episode of the juice box podcast is sponsored by the Omnipod five. Learn more and get started today at Omnipod com slash juice box. Check it out. I

Kristen 2:22
am Kirsten Santos. I am 36 years old. I've been married to my husband almost 14 years this year, we have a 10 year old son who is a type one diabetic, and he was diagnosed no lie, the week the world shut down, in March of 2020, we were in the hospital when they started shutting everything down. Wow, crazy.

Scott Benner 2:49
Good times. Did you make it into the hospital where they would still let you and your husband in at the same time?

Kristen 2:54
Yeah. I mean, it was, obviously, it was, like, on everybody's minds, what's going on, what's happening, but the way that I figured out that that was going on with him was an even crazier story, because we don't have this in our family. My husband, he's got a cousin who's got a son that has it, but it's that's like a distant, sort of distant relation, so there's no history of it, and our family other than that. And it was like a flip of a switch. It was the weirdest thing. He was five in that January, he started eating more, becoming more thirsty. You know, your typical signs. But you know, as a mom of a young kid, he's, he's my only one, all I could think was maybe this is some kind of weird growth spurt. So one day, I picked him up from school, and he had been wetting the bed every night that week, multiple times getting up multiple times to go to the bathroom, and then the night before, seven times he got up. And I'm like, This is not normal. This is like, something's wrong. And my husband, he's like, No, it's I'm sure it's fine. And, you know, of course, what do moms do? We Google, we Google. And I Googled, and that was the first thing that came up. And he says, There's no way that that's what's going on. And I, I'm thinking, No, it's there's got to be something else. There's got to be some other crazy, simple explanation.

Scott Benner 4:14
Google doesn't know about you did something that everyone does. Yeah, I'm just going to point it out today. You said, there's no history of this in our family. And I thought to say, oh, there is, now and then you said, except for my somebody's cousin son. And I'm thinking, I know that's not how people think of family history, but that's in your family like that makes sense to me. You know what I mean? So anyway, also I want to tell you, and this gives you a chance, in the beginning to relax and get settled that last night, I had a dream that I was peeing in my closet. I opened my eyes and I was like, I gotta go the bathroom. And I got up and I went to but in the just want to be clear the dream, the dream I. I was standing in my closet peeing, like, viciously, like, like a fire hose, like, it was, it was, it was comical. Goodness, I couldn't stop peeing, but I kept reaching out and trying to move my wife's clothing so it wouldn't get messed up.

Kristen 5:12
It's like, I don't want to get in trouble for this, so at least I'm gonna sort of prioritize her in this moment. So

Scott Benner 5:18
I'm like, in the bathroom, in the dark, in the middle of the night, now, going to the bathroom, and I'm thinking like, I'm scared of being married in my dreams, and I've been mad, and I've been married for three decades, three decades, and I still in my dream, was like, Oh, I can't pee on Kelly's stuff. Do you think when people are listening, that they think, you know, every once in a while, Scott, if you just stopped and said, I'm so sorry that happened to you and your family and your son, it doesn't occur to me to to, like, turn these into like, pity sessions, you know what? I mean, like, but I am like, it sucks, you know?

Kristen 5:53
Well, yeah, but at the same time it's, I mean, in the moment it sucked, you know. And still, sometimes it sucks, because it just sucks to suck. You know, you just kind of learn to adapt, and then it just becomes, like, the ugly step child. You know what I mean? Like, I don't know, like, if that's awful to say, but that's just only for step children. Nothing that step children are ugly because they're not. Let's

Scott Benner 6:18
choose it up a little and say red headed step child, and then that way we can offend two groups of people, right? No, but I understand. It's sort of like off on it the corner, it's there. It exists. But it doesn't feel like it's, oh god, this is horrible for step children. It doesn't feel like it's part of the core of what's happening anymore, right?

Kristen 6:36
And, but, and that first, like, year, because, I mean, the whole everything shut down. So it's like, that's all we did, you know, like everybody else was binge watching Netflix, and, you know, gaining 75 pounds. And here we are trying to keep our kid alive. If it had to happen, God forbid, it had to happen. But if it had to happen, that was probably the best time, because we were both home, my husband and I to just learn this new life. But, you know, it just, it was just, it was just crazy, just how it all happened. Because one day, everything's normal. And I say, you know, we're given seven, eight injections every day, and it's just, you know, to it to a kid who is terrified of needles, you know? And so it's, it was just, it was a huge growing experience for for all of us, and it

Scott Benner 7:19
saved you from the tiger King. So that's pretty great. It did not. Oh, Jesus, sorry, it

Kristen 7:24
did not. It it did not. No, no, it did not save us from the tiger King. No, we've, we've broadened our horizons when it comes to different things that we watch. And Tiger King was one of the ones that we, uh, watched to uh, entertain ourselves during that, gosh,

Scott Benner 7:41
I watched so many different, so many different television shows that I don't believe I would have watched otherwise, and some of them were awesome. Yeah, but sure, yeah. Okay, so let's just go down this road for a half a second Kristen before we move on. I've investigated the etymology of red headed step child, and it's okay, obviously, originated in American colloquial speech, possibly in the 20th century. 20th Century, with negative associations linked to red hair and of the concept of step children being neglected. Oh, yeah. No, hold on. There's anti red hair sentiments and notions that step children's receive less than favorable than biological ones. Geez. This is terrible. This is probably a colloquialism we shouldn't use anymore. It

Kristen 8:22
probably is not no. And the second I said, I'm thinking, You know what? I

Scott Benner 8:26
heard it in your voice. You're like, I could have said something else. I could have said something else. Yes,

Kristen 8:30
I could have, yeah, yeah. When you, when you're when you are brought up, and you just, you grow up around these sayings, and you're just so used to inserting them in conversations. And then it's like, wow, um, I'm not

Scott Benner 8:41
policing you don't worry. I was just thinking we could figure out where it came from. But yeah, doesn't look like it. It's not giving me much more anyway. So

Kristen 8:50
we're not now. We're educating everyone that this is probably not something we should say

Scott Benner 8:53
going forward. I would not say it if I was them, unless, well, no, let's see. I'm older Kristen, so I was gonna say, unless there's no redheads or step children around that, it's probably it's funny because it is just a colloquialism. It makes a point. You know what I mean? Like as you hear it and you understand what somebody means immediately. It is very unfair to the people who are called out in it. So, right. Anyway, moving on. So the kid gets the type one. Let's go back to the idea that during COVID, having time to focus on it was important, because I think there's a there's a good threat in there, so So you're all home able to focus on it. What is it that that time gave you? My daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you, Omnipod. Dot com slash juice box, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bath tub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once omnipod.com/juicebox get a pump that you'll be happy with forever. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, usmed.com. Med.com/juice, box, or call 888-721-1514, us, med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and Dexcom g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better business bureau At US med.com/juice, box, or just call them at 888-721-1514, get started right now, and you'll be getting your supplies the same way we do. It was a benefit and a curse. Tell me how it

Kristen 12:11
was a benefit, because I don't like change, you know, and so I had to basically redefine my definition of motherhood, you know, here I go from someone who is protecting and, you know, sheltering and you know, nurturing, to someone who's inflicting pain and who's, you know, holding down a child who doesn't understand and is screaming at the top of his lungs and he's saying, Mommy, like, Why are you hurting me? Don't do it anymore. And all these things are like it's all going against everything I believe as a mom, and so I had to go into a room separately to then address myself and say, You're doing this for his benefit. It's it's not hurting him, it's helping him. And I, you know, and having this separate conversation with myself,

Scott Benner 12:58
How old was he? Again, remind me five? Okay, yeah, geez, no. It sucks. He said those words, why are you hurting me? Yes, yes, awesome. Do you respond? Yeah,

Kristen 13:11
my response really was to get through it at first to then address that later. You know, you spend three days in the hospital. They give you all of this, all this stuff, and then it's like, All right, good luck. And you go home, and I remember, like, the first day we got home and we checked his blood sugar. It was 239 and I'm like, Oh my God, what do we do? What do we do? What do we do? I'm looking at my husband. I'm like, I don't, I don't remember. I don't remember anything. Like, I don't know. I know nothing, yeah, what do we do? And he said, just call the Endo. So I called the Endo. She's like, it's fine. This is what you'll do, follow the paper. And I'm like, Oh my God.

Scott Benner 13:44
I called the endo the night we left the hospital at, like, it could have been, like, three or five in the morning. I literally called her cell phone and said this, like, guys, like, here's the number. I don't know what to do. Yeah,

Kristen 13:58
yeah. It's like, it's like, you have so much being pushed into your brain. You're expected to remember it. Now they, you know, they say remember it, but then they also say you're gonna have questions. So it's like, there's almost like a hit in there, saying you're never gonna, you're not gonna remember all this. You're gonna be calling us like 24/7 and that's okay, yeah. But me being the independent person that I am and the perfectionist that I am, I'm like, I don't want to call them 6000 times. I want to get this right the first time. And so that was kind of like, going back to the original thought of COVID is, you know, here we have, like, this nine month time where we can figure it out and, you know, in my mind, get it right, you know, once we get it right, it'll be fine. It'll you know, and that's just my naive a misunderstanding of what diabetes really was at the time. Like, I

Scott Benner 14:46
just got to move a couple of pieces around. This is all going to be okay, yeah? And it'll be fine. Everything's gonna go

Kristen 14:51
back to normal, you know, lo and behold, obviously, not. But, you know, us being home, it the house got very small very quickly, yeah, which I'm sure did. For everybody else, but it's almost like this elephant in the room that was just there all the time. And, you know, what do we what do we do? How do we do this? You know, who's holding them down this time, and who's who's wiping the tears away and who's grabbing the band aid and, you know? And so my husband and I, we just, really just had to hunker down and focus and figure out, you know, our new routine and our method, and that time gave us the chance to do that, but at the same time, it also grew the monster in me that is the perfectionist, and it's I still to this day, I and I'm not I know I'm not the only one I have sugar may up on my phone all the time when I'm at work, when I'm laying in bed, when I'm as I am a full time college student do? How long

Scott Benner 15:42
has it been now since the diagnosis, five years and you're still staring at the numbers? Are you still still staring at the numbers? Yes, I'd like to dig in a little more. So let me work backwards. What's his time and range as a 1c that kind of stuff like present day, present

Kristen 15:57
day time and range. You know, we're gonna say it's 81% 82% okay?

Scott Benner 16:04
And is a one sees what? Like 6264,

Kristen 16:08
this last one. Yeah, he's gone through a couple growth spurts that have made his sugar a little more resistant.

Scott Benner 16:14
It's still awesome. That's a great a one thing. And then so my question is, is, why are you staring all the time? Like, are you constantly fiddling with it, or are you, is it anxiety?

Kristen 16:23
It's probably both. It's the need to control it, even though I know it's not controllable 100% it's like this. Lie I tell myself. It's like this. You know, if I'm looking at it, then I have better control over it. It's, it's some kind of like mental thing. I think

Scott Benner 16:40
I thought you're gonna say illness. Were you like this prior? As

Kristen 16:43
far as being controlling, yeah, I guess so. Yes, always, yes. I am a. I am a type A to the core. I have to have everything lined up, because if something catches me by surprise. I come undone. I come unglued. And part of me thinks this is life's way of trying to retrain me and say, Hey, you can't control everything. So you know, here's something that is completely uncontrollable. Kristen,

Scott Benner 17:15
you'll take this well, because I see I see you and I have a good vibe together. What did you use to point you're crazy at before diabetes, my husband was gonna say in my if I was married to you, you'd been in my dream telling me, Don't pee on that. Don't be on that. My husband, yeah, 100% to the point where, so you guys were younger. I know this. It's funny. You said you were married for 14 years, and I thought, Oh, I'm at the part of my life where I thought, oh, that's quaint. So you've been How old are you? Tell me how old you are. I'm 36 All right, so you've been married since you were 2422 22 I was gonna say 22 Why did I stop myself? So since you were 22 and he's your age,

Kristen 17:52
he's a couple years older than me, so he's, he's gonna be 38 so

Scott Benner 17:56
what'd you do? You found a fixer upper. He was almost good, and you had to fix him.

Kristen 18:00
You know what? He came to me and he fixed me. Oh,

Scott Benner 18:03
yeah. Oh, tell me about that. From we're gonna get to how this relates to diabetes, but how to tell me about that, if you will.

Kristen 18:10
So I grew up in church. My dad was in ministry. I've been exposed to that my whole life, and a part of that my whole life. And when you brought up in a Pentecostal upbringing like I was, there's a lot of expectations with that, and I think that played into a lot of my control issues. I think there was just like, a level of expectation and not enough grace. And as an adult, I understand that a lot more, and I try to introduce grace to more people, because, you know, we just, we all screw up all the time, but I think there was just a level of expectation. What's

Scott Benner 18:50
that mean? Like expectation, like Jesus is watching

Kristen 18:53
to always, always be on, always be presenting myself the way that I needed to be because

Scott Benner 18:59
he was the pastor, and people were looking or because God's gonna send you to hell if you don't. No,

Kristen 19:04
not, not that. It was a lot of, you know, we're an example. My because I have a younger sister, my sister and I, you know, were examples that he, he didn't pastor a church. He was just on ministry, like in this, like on staff, okay, part of the ministry. But you know, people were they look to people in ministry for how are their children behaving? Like, what do they do when crisis happens? How do they handle things? And so, you know, I think that it was more of that, rather than like, you know, if you make a mistake, God's gonna send you to hell. Because I never grew up with that connotation.

Scott Benner 19:35
What it was was the congregation is looking to us to be an example, example, right? And an example that probably doesn't really exist in the world, because nobody, nobody's perfect, right? And so you Sorry, Mom, your parents put on you to be perfect, or you felt like you needed to be I felt like I needed to be okay. Are you just protecting your mom now? Or is that true? No, no,

Kristen 19:57
I'm not protecting them or my dad. No, huh? No, it was a pressure I put on myself. And even even now, like having conversations about my childhood, she you know, my mom, she would tell me, she's you would be so much harder on yourself than we would be. She said, You just take something and you take a mistake and you just take it one step or two further to punish yourself, and you just drag it out. She said, You know, I didn't want you to hold on to hold on to that. I don't want you to feel like we put that on you. She said, maybe, maybe we did. I don't know, and if we did, I'm sorry, but I always have a tendency to punish myself way more than I'm being punished or I'm being reprimanded or criticized, because I just had this high expectation of myself. Why? I don't know it's always been that way. So do

Scott Benner 20:41
you have any health issues at all? Like, do you think you're like, you have thyroid or anything like that? I

Kristen 20:48
don't have thyroid. I went through a series, like in high school, where that was depression. Thought it was couple of different things, that I was bipolar. At one point, I would just go through these moods. And turns out it's just anxiety. And so I take, I take medication for it, but finally nailing it down to that. But as far as, like, medical No, I mean, I get migraines, but, I mean, my thyroid is in great shape, and everything else is in great shape. So I don't, I don't know,

Scott Benner 21:16
it took you years to figure out that you just you had anxiety.

Kristen 21:20
Yeah, anxiety wasn't something that people talked about. No, I know when I was growing up, you know what? I mean, like in the night, like in the 90s, nobody, nobody said anything about anxiety, nobody said anything about depression, nobody said anything about any of that. Like, it was taboo to talk about it, especially like in the church, you know? I mean, it's a lot more talked about now, and I think it's important, because a lot of people struggled with it internally. And you can see it in how they are adults now, you know. And so it's like,

Scott Benner 21:45
you think people didn't talk about it when you were young. You should try to go back 20 more years

Kristen 21:49
where, yeah, I bet I can't even imagine. Like, let me tell you,

Scott Benner 21:53
it was super simple. People were stupid, crazy assholes. That was it. Like, that's it. That's just we had people broken up into small categories. That was, that was it? Yeah, it didn't matter. Like, I mean, if somebody would have known back then that you had an issue, they would have just been like, oh, there's something wrong with him, right? Like, that would have been the end of it. No desire to see what was going on with people. Like, nobody was even looking right? I know you. Mean, like you have anxiety as a kid when you were growing up, even then they're going to tell you, Oh, you're depressed, yeah, yeah, for sure. And then, yeah, yeah. So, so you work through that, like, but how does your husband save you from it? Also, let's not give him too much credit, because it doesn't sound like you're all the way there yet. But now does he start moving you in the right direction?

Kristen 22:39
I you know, like, my dad stepped away from Ministry after a while, just because it was he needed to provide for a family. And there's not a whole lot of money in ministry. It's just, it's a very, very low income. Oh,

Scott Benner 22:50
that was a job that wasn't like a thing you volunteered for on the weekends. It can be for some churches. It just depends on the size of the church. But he was making an income from it, but just making

Kristen 23:00
an income. Yeah, he was. And it got to the point where, you know, you got two growing daughters who are learning about fashion and learning about, you know, all these different things that bills need to get played, right? And so it's like, yeah, we gotta, we gotta do something about that. So my dad eventually, ironically, he was a bartender when my parents met. So, right, did you go back to that. No, he went into the restaurant business. Okay, so, you know, he's always good at managing things. He's always, he's great with people, he's great with. And so that's, that's why he did great in ministry, because he's just a great person to be around. And, yeah, very easy going and,

Scott Benner 23:34
like, how to chat people up stuff like that.

Kristen 23:36
Yeah. And so restaurant business was perfect for him, but it's also, you know, long hours. You're talking about 6070, hours a week. And so I never saw my dad, so, you know, hello, boy issues, you know. Oh, okay,

Scott Benner 23:51
so he saved you because you went out with a string of shits. But, yeah, okay,

Kristen 23:56
I got it. I, you know, it's not easy to it's not hard, it's hard to figure out. I mean, it's, it's a common story, you know? It's just like, you know, here's this girl that all these bad relationships because your dad's not around as much as she would like him to be. And, you know, then here comes this guy, you know, and he's beautiful and he's strong and he's confident, and I'm the first girl he ever dated, you know? What? What girl doesn't love that? You know? I

Scott Benner 24:20
mean, Chris is like, I got him before he knew how messed up I was. Basically, yeah, what I did was I tricked him, and by the time he figured it out, it was too late, so he decided to hang around and see if he could help. Is this what happened?

Kristen 24:33
This is a he fell in love and he wasn't ever gonna let go. Yeah, I

Scott Benner 24:37
hear it now. You're making me think maybe Arden has difficulty finding boys she likes because I'm so fantastic. I'm just kidding.

Kristen 24:44
Well, if that's the case, hey, kudos to you, Scott for that. Because keeps them away. Because that's, that's rare. It's, it's, yeah, it's great in her

Scott Benner 24:53
Jetson a couple boys for being dopey. Hey, yeah, the minute they do something too crazy, she's like, I'm not up for this. And I was like, oh. Awesome. Well, okay, so you meet him, he kind of saves you in such that, like you're not going out with questionable people anymore. And he's a good he's a good guy and everything. And

Kristen 25:11
that grounds, yeah, he's grounding. He's I balance him out. He balances me out. He's the analytical one. He's the one who criticizes. He's the one who is sees everything in black and white, and then here I am. I see everything technic, color. What

Scott Benner 25:24
do you add? Like, a little excitement to his life? Oh, yeah,

Kristen 25:27
yeah, exactly. A lot of excitement. He says, I'm the only one that can actually, like, really make him angry. He's got a very, very long fuse. I'm the one that shortened that by a long

Scott Benner 25:35
shot. So I meant excitement, like, fun. But you were like, No, I can really piss them off.

Kristen 25:40
Excitement too. Yeah, sure, yep. I mean, we'll add that in there. But, I mean, you know, probably 50% of it is like, Oh my gosh. What like are you're crazy. But then the other 50% is, hey, you're fun. So I said to

Scott Benner 25:53
my wife one time, I was like, do you think, like, every 10 years, legally, we should be allowed to punch each other in the face once?

Kristen 26:01
I like that idea. You probably go for it too. She,

Scott Benner 26:04
she was like, I'll definitely hit you. And I was like, awesome. Yeah, I get what you mean. Like, you're just around people for a long time, and you can bring, like, passion out of him, but do you bring it out of him passionately, or do you nudge him till he just explodes? We've

Kristen 26:17
learned, you know, being together we, you know, we started dating in 2009 we've really learned a good balance, if I'm being honest. I mean, you know, for the first five or six years, it was a little crazy, just, you know, figuring out how we can communicate, because we that's like the biggest thing is, like, just figuring out how to communicate.

Scott Benner 26:36
Okay, do you both struggle with it? Or just, yeah, yeah,

Kristen 26:39
we both struggle, because, like, his upbring is a whole other different, like, I mean, a whole other different thing, and very different from mine, even the fact that he was raised in a in a Christian home too. So we've got a lot of that background as the same, but as far as you know, just different family situations. It was very different than mine and

Scott Benner 26:56
Kristen. Can I ask a question there? Because, like, and this is gonna sound rude, but I don't mean it rude. Like, what is it about his upbringing that let him put up with what you were doing? You see, I'm saying, like, how come he didn't like, like, how come he didn't look at you and go, No, thank you. Like, there's a reason. Like, something, what'd you do? Are you super pretty? Or like, I'm not, I'm not even kidding. Or like, is it like, do you just think you were just so different than what he was used to that it was fun. Like, what do you think that's

Kristen 27:24
a question I've ever been asked before, um, even by, even by counselors, I've never

Scott Benner 27:27
been asked that's because they don't have a podcast. But that's okay, right? I honestly,

Kristen 27:31
I think, and this is going to sound like such, like a cookie cutter answer, but I really think this is what he would say if he was sitting right here. Okay? He would tell me, and he would say it's because he saw the bare bones of what I what I actually am, and who I actually am, besides all the crazy, because the crazy came from circumstances, you know, I wasn't, I wasn't like that growing up, I was a very happy go lucky kid, and I had a great childhood, and you know, a lot of The pressure I put on myself. And so having him kind of be around to kind of alleviate that pressure, and kind of like help me realize I don't need to put that much pressure on myself, it kind of unearthed who I really am. And I think he saw that and I and I think that's kind of what he why he stuck around, because there's more than just the crazy potential. And I really think that's, yeah, I think that's, I really think that's what he would say, yeah.

Scott Benner 28:26
I think that's what a lot of people would say. Because I know my wife wasn't like, buying what was for sale. She was buying what she thought could happen, yeah. And I think I was too like, you know, and my wife grew up in a in a weird situation, not as religious as yours. I had similar feelings when you were younger. I was like, this is a great person. Like, she's been through some stuff, but, like, I can see it in her, like, I told her when she was really young, God, we were like, in our early 20s, I was like, you're gonna be a really terrific mom one day. I was like, I could just tell and she really is, like, it just, you know, like it was in there. And, you know, anyway, you understand. I want to talk about all of this to get back to why you're up that kid's mess about the diabetes. Yeah, so, okay, so I think we have enough background now. So present day, well, let's go through diabetes management a little bit. Would you say you have it together, like, you understand how to manage things. And, you know, it's not easy every day, but like most days, you it's manageable.

Kristen 29:29
Yes, yeah, most, most days I i understand what's going on. Of course, you know, there's going to be days where, like, I really have no idea what's going on, like, you know, but for the most part, yes, I have an idea of what's going on and and a lot of that, you know, being home and being here and doing it every day for nine months without any kind of, you know, extra curricular anything going on. You know, I didn't have a job to do. I didn't have a I have anywhere to go, and so I. That's it became my life, and I got hold of it a lot faster than I think a lot of people do, because, you know, I read stories about people that have, they get died diagnosed middle of the school year, and then they got to turn around and go right back to school and figure that out. And we did everything in steps. And it was, you know, okay, we're home. We're home for the foreseeable future. Let's figure out how to do diabetes at home. Oh, and then

Scott Benner 30:27
Kristen, let me tell you, I think that if everybody had that break at it at a pivotal life moment like this, the people

Kristen 30:33
would be better off. Yeah. And I agree, yeah, especially

Scott Benner 30:37
in America where, like, there's other countries, you know, people get pregnant in Canada, they don't come back to work for a year. Yeah, yeah. That's, I mean, like, Here they're, they're, you know, you're leaving on a gurney from your job to have a baby. And they're, like, will you be when will

Kristen 30:51
you be back? Like, see you in three weeks. We got

Scott Benner 30:55
a little taste of it here. I mean, it sucks, COVID. Part sucks, obviously. But like, you know, I definitely I see that but, but here's the question, though, like, now you've got it, why are you still acting like you don't have it?

Kristen 31:07
Well, I'm working on that, okay, and I'm working on that. I've been working on that because I was seeing what it was doing to me, good, because I he went to kindergarten that following fall, but the kindergarten didn't have a full time nurse. So it was up to me, either he's an only he's only child, he will only ever be an only child. We tried. I lost two babies in the process. It just never gonna happen. Yeah, I'm sorry. Oh, it's okay. Um, so him being in school is important for his mental health and for his emotional well being, yeah, so what I did was they didn't have a school nurse. It was a it was half day kindergarten. I sat in the parking lot every day for nine months watching Netflix, just because I would have to go in and I would have to dose him for snack, or I would have to dose him for lunch, or, you know, whatever it was, you know, figure out recess. And I want

Scott Benner 32:04
to tell you, I don't think that's I'm gonna sound crazy now, but I don't think that sounds crazy. Okay, I think if you got caught in that situation, then I understand, like, I tried to listen when Arden was little, I want to say there was no CGM, there was no, like, sharing and stuff like that. Of like, data. She didn't have a pump, but I wanted Arden to go to like a preschool thing, so I sat, I took her to a half day preschool thing, and I sat in the parking lot while she was

Kristen 32:28
out there. Yeah, okay, so, so okay, because I, when I tell people that, they look at me like,

Scott Benner 32:32
no, it's situationally I understand, like, yeah, if your house was too far away and there was nobody at the at the daycare or the preschool or whatever that could give them insulin or whatever. Then, I mean, what are you going to do? Right? You're trying to give them that experience. But the problem is, is that you, it sounds like you conditioned yourself to believe that's your situation, but it's that's not your situation any longer, right,

Kristen 32:55
right? Yeah, the following year, we put him in a school that with a great nurse, and she's amazing. And so I started getting a little bit of a taste of independence, but I didn't want to step too far out of that. So guess what I did? I got a job working at the school.

Scott Benner 33:07
Oh yeah, that's pretty crazy. Okay, so why did that happen? Why did that happen? Like, why did you say, hey, there's a good nurse here. This is going to be okay, but I still have to be there. Like, why are you so special? Well,

Kristen 33:20
part of it was because I needed, we needed extra income. Oh, okay. And so it's like, Okay, do I my husband? He's in ministry full time, so I won't care. Full circle, so my husband, my husband, my husband's a worship pastor at our church, and he does that full time, and so, but our church is 45 minutes away, so you know, if, if an emergency were to arise, who's going to be the closest me? Who's going to get there the quickest me? So what a better way than to just go ahead and work at the school. So in case anything happens, I'm already there and I'm making money at the same time. It was, it really was a great situation, because then I got off work when Elijah got off work, that's our son's name is Elijah, and I got off work and, you know, we went home and we had the night. And it schedule wise, it worked out great too. So it's like making money I'm there schedule wise, it was great. Has there

Scott Benner 34:09
ever been an emergency? No, okay, does that not make you feel comfortable that, like it's been five years now and there hasn't been an emergency, which

Kristen 34:18
is why I am working two jobs outside of the house and going to school full time. Awesome.

Scott Benner 34:22
What are you going to school

Unknown Speaker 34:24
for? Business Management? Nice.

Scott Benner 34:26
Listen, it seems to me that you're an anxious person who has probably some control issues, and your kid gets type one diabetes, so that stuff gets magnified, fair enough, and you get put into a couple of situations where you make some decisions, where other people can look and scoff at you, but them who cares? And then you saw what's going on, and you're moving through it, and you're making steps to move away from it. Like, do you not feel like you're doing well? I do.

Kristen 34:54
I feel like I'm doing well. I feel like I'm doing a lot better than I was in the beginning. For me. It's just had to be a process. It's had to be, I can't just, like, let go completely. And my husband, he can do that. He's he is easy going enough to do that. I'm not. And so it's had to be, it's one finger at a time. You know, I've had my my hand clutched around this diagnosis from the beginning, and so one, one finger at a time, I'll let Okay, I can't let that go. And I only have four, four fingers clutching. Can only have three. I don't think

Scott Benner 35:26
this sounds like a bad idea at all, actually, like I feels like you're making good, good motion and going in the right direction. I

Kristen 35:32
think so. Yeah, I do. I think so, because I I've gotten to the point and and some of my decisions that I've made have been because of him. I went back to school thinking I wanted to be a teacher, and then I became a teacher. I became a music teacher for a year at a school because they needed someone interim. And that's what I did, because that's my music's in my background, and I'm like, I don't want to be a teacher. I don't want to be a teacher. Then again, that is that whole persona of, you know, taking care of a bunch of little kiddos and being responsible for them and having to get it right. And because, if not, then, you know, I'm a part of that journey where maybe they're not reaching their benchmark and all that. And I'm like, I don't, I don't

Scott Benner 36:13
need that pressure. Your anxiety is not good for that,

Kristen 36:17
right? It's not. And so it's like, what can I What can I do to where I'm I can Bloss into the person that I want to be? Because I always thought I was just going to be a mom and stay at home, mom and a wife, and there's nothing wrong with that. Like, that's what I that's what I dreamt about, that's what I wanted to be. And then I think this, this diagnosis, really pushed me to think outside of the box just a little bit more. And it's like, Yes, I can be a stay at home mom, and I love it, but I also have this side of me that's creative and is innovative and is, you know, I can be audacious and I can think and come up with ideas. And so what can I do with that? And so I work in a nonprofit, and then I am also a assistant manager of a of a retail shop. So I'm doing two completely opposite things, but it's also giving me great experience, and I feel like I'm becoming my own person, I think, for the first time, really awesome.

Scott Benner 37:12
So really, I'm excited for I was a stay at home parent for a really long time, and there's some aspects of it that are awesome, like, really, genuinely awesome. And you know, my connection with my kids is one of them, you know, being around for people when they need people is is awesome, like, the less money things not as awesome. But I hear you, like, the entire time you're doing it, you think there are other things I could be doing, and I, I'd like to go find out what those things are at some point. You know, it's funny, I still do it. We have a situation that our situation currently is that, you know, Arden went to college for a couple of years and just really didn't, for a number of reasons, didn't like being away, had some bad luck with a with a place she was at. And, you know, she's home now, and she's commuting to college, so she's here now, which is fantastic. Yeah, my son got out of college, got a job, went off to another you know, he went halfway across the country, worked there for a year, said to himself, like, this isn't right. I know which direction I want to go into. Can I please come home? I need to work on something. Came home, taught himself how to code, and got a job. He's doing great now, but, you know, instead of sending him right back out to go pay for an apartment, again, that was, you know, just sucking his money dry, he said, you know, could I just maybe stay, you know, a little bit and save some money up so when I leave, I could buy something instead of, you know, instead of renting forever, and we just like, yeah, that's, that's fantastic. So they're still here, yeah? But now my son's, you know, 25 and Arden's 20, and I don't take care of them. Obviously, I'm not running around picking up after them or anything like that, but I still do the things I do, like, you know what I mean? Like, there's still times where, like, I mean, they do their own laundry, but there's times where I'm like, Hey, I'm doing laundry. If you have something, put it here. Or, you know, like, my son's gonna, like, get a break after a meeting about, you know, a half an hour from now, and you and I are gonna be done, he's gonna be like, Hey, you hungry, and I'll I am hungry, and I'll probably make breakfast for both of us. And last night he was in the kitchen. He's been messing around, learning how to whittle, like, and it sounds weird, but like, but he's like, he's like, I'm gonna try to, like, you know, carve stuff out of wood. It's like, as this kind of a thing to do while I'm sitting down like, you know, at the end of the day. So he's making a bear for his girlfriend for Valentine's Day. That's amazing, because she said I'd like a bear, so, like, he's been working on that. Arden was sitting there. She's not feeling well. Her lady time is upon us, yeah, and we were all kind of sitting around, and I had to at some point, I was like, I'm gonna go clean up the dishes. So I'm washing the dishes. And behind me, Arden sitting with Cole. Cole's whittling. Arden's doing something. I think she was doing homework on her laptop. They both had something up on the television. They were watching, like, I don't know, some roast or something. And I just got real still for a second, and I thought, like, I don't want to forget this. Yeah, yeah. So like, it felt weird, like to turn around and take a picture of them, so I didn't do that. But later that night, after everybody dispersed, there was still, like, wood shavings on the table and like stuff. And I took a picture of the table, and I thought that's gonna come up in my memories, like, 10 years from now, and I'm gonna remember standing here at this sink, right? That's the stuff that being a stay at home parent taught me right right now, as awesome as that is, if I would have to do that for the rest of my life, I would have, like, I would have jumped out of a window. Yeah, I had things I wanted to do as well. And you guys probably don't know this, but, like, I think the podcast exists in part because when I was 2021, 22 years old, like, I wanted to write movie scripts, wow. Like I thought, like, I could probably write a really good movie. And then, I don't know, I tried a little bit, but then I got married, and then we had kids, then I stayed home with Cole, and then, before you know, it, like, that doesn't happen. I did get to write a book, but I think this podcast is important enough for people living with diabetes that I can give my time to it. Now as an adult, like, you know what I mean? Like when I was 25 you would have told me, like, go off and just screw around and write or something, and I wasn't married or anything like that. I would have been like, Yeah, fine. Like, I have that personality, I would have done that. But now, as an adult who's responsible for people, I can't waste my time away like you don't even, can't just sit around like I want to be doing something important while I'm working, right? But I think that's what the podcast does, is it lets me be creative and at the same time do something that I think is valuable. Exactly, yeah, that's what you're looking for. Yeah, yeah. Well, you'll find that. I found it. I used to work in a sheet metal shop,

Kristen 42:07
and yeah, look at you. Now, how many, how many episodes in Are you? Oh, god,

Scott Benner 42:13
oh, it's in front of me. I put up episode 1425, today. It's called voluntold. I believe the man was told by his wife to come on the podcast. I think that's how we got that yesterday, I put up an episode with a para cyclist who has type one diabetes. It's incredibly uplifting and hopeful. She's like a force, and I think she'll help somebody. And the truth is, is that months from now, your episode will go up, and it's going to help somebody too, because there's a ton of people out there who are parents who feel like raising their children is stopping them, maybe from doing other things, but they know how important it is. There's definitely people out there who have anxiety and feel like they have control. You know? They want to be in control of everything. That's a terrible thing to have with diabetes. Yeah, you know, so every story helps somebody, yeah. So, okay, so, did you mention therapy? I

Kristen 43:07
did, but it was unrelated to this. It was actually before this part of me wants to do therapy at this point, just just to be able to talk it out. Um, you know, my husband and I, we talk about we talk about it all the time. We talk it out. And, you can talk about it with other people that are in the situation, not in the situation, but are extensions of the situation. My parents, my in laws, both sides of grandparents, they both watch Elijah, and they are very forthcoming and wanting to spend time with him and make sure that they're always learning, and they're always paying attention, and while also uplifting him and being a part of his life. But you can sit down and talk to them about all of this, and they can understand to an extent, but you know, when you're living with it every single day, it's just different. And so you know, talking with my husband, it's more of vent sessions than anything, and you know he'll turn on ven to me. And so, you know, it's just more just blowing off steam. But I am an advocate for therapy, just because of how much it's helped me in the past with other situations. I'm hesitant to go now, because I know what they're going to tell me. They're going to tell me that I need to relax and I need to help my son kind of walk into this independent season he's going to be walking in as a teenager and as as a young adult. And he's, he's a little bit of a control freak like me, and so that's going to be an advantage to him, in a way, because he's going to want to take control of his, you know, of his own diagnosis, but at the same time, he's also has some of my husband and him, and he's easy going. And so I think that will, that combination is going to serve him well with this. I'm encouraged by that, and he understands, and he grasps, and he wants to learn, and he wants to be independent. Still wants mom to do things for him, but still wants, but still wants to learn to be independent. But I and then the older, and the older he gets, the more I see, the less I worry. I'm always going to worry I'm his mom. It's this just, that's just what. We do, but I think he's really going to take this and kind of figure out how it works for him, and not the other way around. And that gives me peace. And I think that's kind of also what has allowed me to step back and not be so on top of it, you know, and need to be on top of it, and I've learned to let go a little bit in that way, just by not being as much around as I have been, you know, I've been basically the main one, the last, you know, the three, the three, first three years, and now working two jobs and going to school full time, I am not the main person. I'm still a main person, but I'm not the main main person. You know, I it's, we're now sharing it. And so that's given me a chance to relax, but also giving me a chance to just kind of discover who I am as a person outside of it, and even outside of being married, outside of being a mom, who I am as a person, as an individual, you know, as someone who's wanting to develop a career and, you know, make make waves in the world in my own way, you know. And but I think the therapist would just turn around and tell me, gotta relax, man, just a little bit more. You just gotta just,

Scott Benner 46:03
don't you think they help try to help you with tools to relax? Not necessarily just say, like, just relax. That's a stupid thing, like a podcaster would say to you, but like, don't you think they would maybe help you find ways to mitigate those feelings so that you can keep growing? Yeah,

Kristen 46:18
and then there's what. That's where the crazy comes in. Because I'd be like, I should have thought of that myself. Why didn't I think about this myself? And why am I paying some somebody $75 an hour to just tell them something I should have thought of and say I should have just went ahead and thought of that's crazy in

Scott Benner 46:31
me. You'll beat yourself up for not figuring out on your own, right? That's a vicious circle. Yeah, I don't have that. So I I'd just be like, Oh, I'd be like, Oh, awesome. We got an answer. Here we go. I don't know, where are there ways you could do it for cheaper? I'm

Kristen 46:47
sure there is. And it's just a matter of of looking into it and not being stubborn, and not, you know, thinking I don't have time, and I don't, you know, what am I going to do that? And I got all these other things that I'm trying to do. And can you

Scott Benner 47:00
help me? I'm going to ask pretty bunch every person who ever tells me they're anxious this, can you help me understand why? Like, what's the mechanical function that stops you from just doing what you know is the right thing to do? Like, do you understand? I mean, I know it's happening to your question

Kristen 47:15
because, because I I've been asked that before. If you have a potential solution in front of you. Why you're Why aren't you heading towards a solution? Yeah,

Scott Benner 47:24
yeah. I mean, like, you know, like, it's funny, because you're talking about yourself like you're not you, that's awesome. Like, you don't even mean, like you're like, you're describing the things you're doing that you don't want to be doing. Like, why not just not do them? And I know that I'm not saying, I'm not saying, Yeah, I'm trying to say, like, what's the mechanism that stops it. Are you aware of the mechanism? I

Kristen 47:42
am aware of the mechanism. I so for me personally, and I'm just going to be really honest, because I see the solution, I know the solutions there, it really just boils back. Sometimes I just want to really feel sorry for myself and just kind of wallow in that overwhelming feeling. And I I'm not sure where that comes from, you know, if I'm really trying to dissect it, when I'm in that state of mind, you know, my the focus is on me. And I think that's really where it comes from. Again, probably diabetes related, because we're always focused on the diabetes and, you know, working our life around it. And so I think, you know, kind of internalizing all of that, but then you bringing it out when I just need someone to pay attention to me and to, you know, nurture me and to baby me, just a little bit. Honestly, I think that's where it comes from. So,

Scott Benner 48:38
so when you don't feel like somebody's babying you your word, right? Yeah, you do it for yourself, yeah, yeah. Is it wallowing, or is it not sad? Is it just like I'm gonna sit here for a while and have the feelings that I deserve to have before

Kristen 48:53
it was I just feel this way, and I'm not sure why, but as I've gotten older, I think it's I feel this way. I'm gonna allow myself to feel this way. I'm gonna give myself permission to feel this way. But

Scott Benner 49:03
do you feel that way for a minute, an hour a week, a month a year? It can

Kristen 49:07
be a couple of days, and then I pull myself out of it, and I and a lot of it is keeping myself busy and having goals. And I've, I've learned that about myself too. You know, if I, if I don't have something I'm working towards, I could sit there and I could wallow for weeks, and I could just be in that state of mind for weeks.

Scott Benner 49:22
Is there a benefit? Is there? Do you feel like when it's over? Do you say to yourself, like, Oh, that was good time spent, or that was not time well spent?

Kristen 49:29
It was not time well spent. It's never time well spent, at least not for me. It's not time well spent. I mean, there are healthier ways, at least for me, and I say all this in pertaining to me, not anyone else, obviously, because everybody's got their own way of dealing with things, but I feel better when I'm busy, but there's still this part of part of me that feels I need to just be in my feelings and just validate that in myself and then move on, even if, after I do that, it's like, well, it helped, but it didn't, I don't know how much, but. Benefit that gave to me. We're just okay. We're just gonna move on now. And so I that's, I think that's just kind of like, still, that part of me that I'm still learning to grow and I still need to grow in to just, there's got to be a healthier way to do that. There's got to be a better, more beneficial way to do that. Then I have this routine of, okay, these feelings are here. How do I urge them in the right way to where I don't disrupt the flow? Because when I disrupt the flow, it just sets everything off, and everything's just, I've got to take extra steps to get back on track.

Scott Benner 50:34
Did the medication you mentioned earlier help that at all it

Kristen 50:37
does? Yes, it does. It took a while to figure out what we needed, what I needed to have. And so there was different times where I was taking different things, and sometimes it helps, sometimes it didn't. Now we finally, my neurologist, of all people, put me on it. What'd they give you? Lexapro? Okay, yeah, and I, and I can tell when I don't take it, or when I forget to take it, or, you know, I I fall asleep, you know, on the couch, and I wake up the next morning and I'm like, Oh, I forgot to take that last night. I can, I can feel it when I don't take it, because I don't feel as steady. I feel a lot more even when I take it compared to when I don't. And I have way less I need to be in my feels when I take it compared to when I don't. So again, all part of the process of,

Scott Benner 51:24
yeah, no, I hear you. I appreciate you sharing this too. Thank you. Yeah, sure, not a thing that I think people who don't go through it could probably understand, and the people who are going through it, or, you know, can use somebody else saying that's happens to me as well.

Kristen 51:39
Yeah, it's just it. My husband doesn't understand it. He kind of knows his cues. I guess there's certain things that I need from him. And he's like, okay, like, this is what's going on with you. You feel, you know, a little panicky. You feel like you're going to come out of your skin. You feel you can't, like, sit down and settle. And he recognizes all of that. And so he's learning to kind of figure out how to respond. Then I get past it, and then I'm fine. He's really great that way. But for someone who doesn't deal with it like he does, he doesn't understand. He's like, he's like, I just, I don't, I don't get that, you know, I don't, you know,

Scott Benner 52:11
is there really anything anybody could do, right? You know? I mean, like, I hear people say all the time, like, I just, I need to be supported by the people around me, etc. But you ask them what that means, and they never seem to really know what that means. So

Kristen 52:22
for me, when I say, like, I just need you to support me. I don't want him to dissect the problem. Like, don't try and figure out, like, okay, like, what's causing this? I just need you to just sit here and just be in this moment with me while I work through it.

Speaker 1 52:36
Does he do it? He does, and he'll, sit there

Kristen 52:40
with me and, you know, and then I'm like, okay, I'm good. He's like, all right, you're good, okay. He's very like, let's deal with this and move on. And so it's like, it goes a lot smoother if I'm upfront with him and telling him, hey, this is what I'm going through right now. He's like, okay, let's deal with it, and then we can move on. And rather, when I just I'm like, you know, dropping bread crumbs, it's like, no, figure this out. I'm trying to drop you clues, and you're, like, completely oblivious, and I need you to understand what's going on right now. But I'm not actually gonna physically say it, because I want you to figure out, you know, the whole thing, you know, like a lot of women do, yeah. Are you

Scott Benner 53:11
trying to scare young men from getting married right now? Is that what you're

Kristen 53:15
doing? I'm trying, no, I'm trying to give a little bit of a women have really have no idea what we're doing. We never know what we're doing. There's no There's no, yeah, we say that we know what we really don't know.

Scott Benner 53:27
I imagine your husband goes and meets buddies later, and he's like, she told me to sit with her. I sat with her. She said she was okay. Then I don't know what the hell happened if I'm being honest with you, do you think that's how he feels?

Speaker 1 53:37
I Yeah, yeah, yeah. What if

Scott Benner 53:41
that's not what he thinks? Is there value in him not telling you what he thinks? Or is there no value in it? If he had, like, a different thought, if he's like, look, Kirsten, I think you should try this. Or I think you should maybe work towards this direction instead of trying the thing you're doing, which is, you know, where we end up all the time and doesn't seem to get us anywhere. What if you tried this? If he did that. Would you be like, get the hell out of here. Or would you be interested? Or what do you think the

Kristen 54:05
grown up part of me would be like, oh, yeah, that sounds like great suggestion. But the girl in me says, I don't want to hear that.

Scott Benner 54:11
Okay, yeah. So then that's where you need the therapist, yeah, yep, yeah. For whatever your whatever your your relationship with your parents is, or was it feels like you're probably stuck there a little bit, right? Yeah, so you have to go figure that part out so that you can have an adult conversation with your husband. So when you have a problem and he has an answer that's different than what you're thinking of, you can be open to hearing that answer, right, right? That makes sense. Absolutely,

Kristen 54:42
that's more productive. And it's, again, like you just said, that's more of an adult conference conversation, rather than, I'm not going to insert my input. I'm just going to sit and be and let you deal with it, and then, you know, we'll wait, we'll wait for the next come around. So,

Scott Benner 54:57
I mean, the point, like you said earlier. You guys balance each other out really well. But then, Then aren't you ignoring his perspective? If you, if you forced him to have your perspective? Sometimes,

Kristen 55:10
yes, and I'm working on that, and that's part of the where it boils down to the communication aspect, because there was a lot of time where we didn't communicate. We didn't. We just kind of assumed the other understood. And a lot of our breakdown came with that. So I

Scott Benner 55:27
was just explaining to somebody the other day that I believe wholly that in every every communication situation, when there are a group of people around, every forget perspective. It's easy to say people have different perspectives. I guarantee you that I don't know how you think this is happening. You don't know how I think this is happening. Like, if we put four people in the room, you know, it's a simple, simple statement. If you if four people watch a car accident and then they later take a report, you get four different reports about what happened, right? Yeah, I don't think it's just because your perspective of where you're standing when it's happening. I think it's because we experience things differently, yeah, like, just just in general. Like, that's why sometimes I look up at my wife, I'm like, I don't know, like, what is she even saying? Like, it feels like she's not here, and I know she's looking back at me thinking the same thing, like, how is he not getting what I'm seeing here? But I just think that that's the thing you have to understand now, whether you can hear somebody else and melt their ideas in with yours, or even take time to consider them, even if you don't want to, you know, commingle them with your thoughts later. Like that's the part that I think any therapist that's trained in a certain way would say that this is a problem that you had with your parents growing up, that you're infantile, you're you're somehow infantilized somewhere, like you don't want to hear it. Do you know what? I mean, yeah, like somebody's gonna tell you something you don't need them telling you something. I don't even know if that's the way people grow up. I don't know that might just be human. I it could be. I mean, is there anything worse than somebody can telling you something? Like, I hate, I hate being told, yeah, I hate it, but it doesn't stop me from telling other people, right, right, you know. So I'm like, I have a ton of opinions too. They are they're like, I don't want to hear your opinions. I'm like, I know you don't, because I don't want to hear yours either. But here's mine anyway, right? That's the human part. I don't know. I know for sure that people be married for a while listen to this, going like, yeah, yeah, yeah. They're not saying anything. I don't know. I just think that the next step of it is, what do you do, right? Like, what do you do with it? So that day to day, you're not beating yourself up about diabetes, and you're not dismissing your husband, he's not dismissing you, and you know, you're not in this situation where you you think, Oh, he's able to just walk away from it. Because I guarantee you, if I got him on here and I said, are you really able to just forget about your son's diabetes, he'd be like, No, but she's so twisted up in it, like, I can't be involved in it. Yeah? You know what I mean? Like, you're probably eating up all the air. And that's, yes,

Kristen 57:59
yeah, yeah, you, you nailed that perfectly. No, thanks.

Scott Benner 58:03
Anyway, if you want him to be more involved, you should probably act like there's space for him, and then his involvement would very likely alleviate your stress. Yeah, yeah. You can decide how this goes next. Do you know what I mean? Like there's stories where you get to pick, like, what happens next? Yeah, you get to pick the interactive stories. Yeah, you pick the right thing, right? You keep picking, stay here and be in this part. Yeah, yeah, just pick the next story. Yeah. That's all, yeah.

Kristen 58:35
Move on to the new chapter. Stop reading. Keep stop reading the same one over and over and over again. I

Scott Benner 58:40
would also like caution people, not just you, but about like, saying things like, Well, I'm gonna go to college now, and that'll change my life. Or I'm gonna do this now, and that'll change my life. Like, you can just change your life right now, right? You know, you can be a college student doing the things that you don't want to be doing, or you can be a stay at home mom who isn't doing the things you want to be doing, like, I don't think the place you are or the thing you do or the thing you are is going to magically change this part. Like this part is just a, I think it's a conscious decision just not to do it anymore, yeah, you know, and then when you see it happen, just don't do it. Yeah?

Kristen 59:15
Because you can, you can try a mask it as much as you want to, with situations or, you know, things to get involved in, but it still doesn't change the root of the problem, right?

Scott Benner 59:24
You know, you're just putting a different face on it. What did they say, like, putting makeup on a pic or something like that? Is that a something like that? Yeah, that's probably, uh, offensive too, probably. But yeah, like you're just, you're not changing your situation, you're changing your surroundings, hoping it changes your situation, right? Yeah, that's not how that's going to work.

Kristen 59:41
No, because that's not life. Yeah, you

Scott Benner 59:45
just all you, yeah, all you got to do is, listen, here's all you have to do, whatever you're stuck on at whatever age you're stuck on, just get past it. That's what you're trying to do now, it's obviously not that easy. I think you go to therapy and you say, I want to know what happened in. My life that makes it so that as an adult, this is my reaction, right? That's what you're trying to figure like, forget the rest of it. Don't go in there telling stories and like, you know, trying to explain to the therapist what you think is wrong. Just say, Look, I have this reaction as an adult. I need to figure out why, and I want to stop it. I don't want you to, like, I don't need coping tools to make my anxiety less impactful, like I need to know why this is happening so it can stop now, some people would tell you at this point that there's studies going on at Hopkins where you could just take some like mushrooms or something, and you'll it'll be gone the next day. But I don't know how accurate that is. Have you heard about this? No, I have not. I guess there's a couple of studies going on where people with trauma of all different kinds are going on a very low dose, you know, guided by a medical physician trip. I guess I'll call it like for on mushrooms, and they, a lot of them, report waking up and all the anxieties going like, there's this one story about the he's a military guy who whose wife just said, like, he came home a completely different person. And they eventually got into this study, this trial, and he went off and got his, you know, his, like, one dose of it, and came back and she reports there. That's the guy that, that I knew before he left for war. Like, just like,

Kristen 1:01:23
sounds that sounds like something out of Alice in Wonderland. Yeah, I don't know

Scott Benner 1:01:28
if it's true or not. I'm just the thing I've been hearing in a couple of different places lately. So wow, it occurs to me that, like, and by the way, that doesn't mean you should go get a mushroom and try it yourself. Like, yeah, I'm certainly not saying that. I'm sure, I'm sure if you listen to the doctors, there's very specific dosing. And I actually think there's a heart issue that you could have while you're using it if you do it wrong. So like, you want to be around medical people while it's happening. Obviously your medical professional, yes, I'm certainly not telling you this is how to handle it. I'm just telling you I've been hearing stories about it. The reason I share it is because what it makes it seem like is that you mentioned earlier, like a switch gets flipped. Like it almost feels like that they're looking for the way to, like, switch it back off again, right? You know. And I think that would be such a miracle for people if that could happen, because your story, like, and the things that burden you, and the things that burden me and my wife and everyone else. Like, just imagine if those things were gone, you know, like, that's pretty awesome. Like, how alcoholism would go down and drug abuse would go down, and probably people hitting each other, and the way everyone yells at each other online, and, you know, all the other things that come with it. Like, if you weren't feeding the 12 year old inside of you, who was, like, somebody can pay attention to me, like, like that. You know what I mean? Yeah, yeah. Anyway, I have it too. We all have it, yeah. Well, this is up cursing. I can't believe we did this. This is awesome. And I curse now, and I just, you know, what the craziest part is, is that before we started recording, I used an example of something about somebody's father being a pastor, and I had no idea about your background at all. Well,

Kristen 1:03:01
that's why I laughed, because it's, there's some things going on too, where some things are getting revealed locally, with some churches and stuff. And it's,

Scott Benner 1:03:09
it's like, yeah, it's just people are just people. Kirsten, it doesn't, people are people. Are people? Yeah, it doesn't. It

Kristen 1:03:16
doesn't matter what position you're in, people are people. That's right, yeah, it's

Scott Benner 1:03:20
okay. Listen, so the world goes, gives us something to talk about. Yeah, exactly, yeah. If everything was perfect, what would we talk about? It would be so boring. See, you know, what isn't that interesting? Like I heard somebody saying the other day that essentially, it's a personal conversation I was involved in. And someone said, Hey, isn't there a possibility that eventually, if we just got an AI to be the government, that everything would be better. And I was like, Oh my God, it was, like, interesting, like, big idea question, like, so you're saying, if we put something in charge that would always do the right thing for everybody as much as possible, and there wouldn't be any fraud or people, you know, power trips or money stuff, like, Wouldn't better decisions get made? And I said, perfect world I see that. I see what you're saying. You know what I mean? Like, like, if everything was perfect and we didn't have people, like, greedy and, like, all the stuff I'm like, you'll hear people talk about, like, well, what if the computer messes up, or what if somebody gets in charge of it and they're greedy? Like, I hear all that. But this person was saying perfect world situation, imagine if there was just, you know, the Great and Powerful Oz. And I know that's a bad example, because I believe he wasn't, like, really looking out for people either, but, but like, imagine there was, imagine there was the thing that actually was just doing it. Would that make society run smoother? And I thought, in a perfect situation, I think it would. And then my next thought was, oh, that might be boring. Isn't that crazy, like that? Is it crazy that? My next thought was, like, oh, that might be boring, you know, like, what would we do? Then just get up and everything would be perfect. All the time. I'd get up, I'd go to work, I'd make a certain amount of money, I'd have enough money to do the like, can you get the Star Trek? You know what I mean, where everybody. Just out there doing the right thing and enjoying their thing and painting, if they're a painter, and, you know, like that kind of, I don't know, I have no idea. But anyway, I thought it was interesting, and I thought, and it makes me think about that, like, what you just said, like, maybe it would be boring than if everybody wasn't like this. I don't know. It

Kristen 1:05:16
would be. It would be boring, and there wouldn't be any really, really good Netflix shows to be created,

Scott Benner 1:05:22
because where would all the intrigue be, and where would all the intrigue be?

Unknown Speaker 1:05:26
Where would the creativity be? Yeah, let

Scott Benner 1:05:28
me just say, I just finished the diplomat. Oh, I was super pissed that there was only six episodes in the second season. I was having such a good time. I actually have a friend who's related to a diplomat. And I say, can you find out if any of this is real, please. She said, I don't think it is. And I was like, it might be. I need you to find

Kristen 1:05:46
out. I need to know. Because I just, I just invested so much of my time, I needed to know if any of this is actually real.

Scott Benner 1:05:52
Like, which parts of this are just bullshit, like, TV stuff, and which parts of this are, like, super accurate, you know what I mean? Like, that's what I wanted to know anyway. I don't know. Like, here's my hope is that if you get to somewhere where we're not just arguing about the same stuff all the time, over and over again, personally, politically, world, you know, everything, if everything just ran smoother, like, would we all just level up? Like, maybe, you know what I mean, like, maybe there'd be a lot more time and head space to do amazing things that would just make humans better and and make everybody's lives easier. I don't know, like I don't know, but anyway, at the moment, just the Wild Kingdom. So all right, Kirsten, you were terrific. I appreciate you doing this. Would you hold on one second for me? Yep. Thank you.

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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, wrongway recording.com, you.

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