#441 Doing the Sarah Dance

February 15, 2021Scott Benner

A family with multiple type 1s and celiac

Sarah's family has a number of autoimmune challenges including type 1 diabetes and celiac.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Friends, welcome. This is Episode 441 of the Juicebox Podcast. And today we're going to hear a tale, but not a tale of a tiny ship. It's a woman who married a man who got diabetes and they had a kid, and that kid got diabetes, and they got another kid and that kid might get diabetes, and most of them have celiac. In the 1950s. who done it? At this point, the music would go Dun, dun, dun. But all I have is this.

Today, as you listen to Sarah describe her life with Type One Diabetes. Well, her life yeah, I mean, she doesn't have it, but everybody else does. So alright. Today is you're here Sarah described life with Type One Diabetes from her perspective. Please remember 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. Do you have a great diabetes doctor endocrinologist, nurse practitioner CDE, someone you see that you love that you wish other people knew about? Or are you looking for someone like that, you should check out juice box docs.com. It's a list that's been compiled by listeners like you have great diabetes practitioners. It's absolutely free. Just go over there and peruse it. See if you see somebody in your area. Or if you have somebody you'd like to add to the list, use that same page to send me the information.

This episode of The Juicebox Podcast is sponsored today by the Dexcom gs six continuous glucose monitor by the Omnipod tubeless insulin pump. And of course, touched by type one, I'll be doing a virtual thing for touched by type one on February 26 2021. And there's still room so you can go to touched by type one org and then go up to their menu. And I think it's upcoming events. It's programs upcoming you'll figure it out. It's the internet, you know how to use it. Anyway, you can come absolutely for free. I'm going to give a little talk, answer a bunch of questions. It's going to be fun touched by type one.org. If you're looking for that Dexcom g six, head over to dexcom.com forward slash juicebox. You'll be able to find out all about art and CGM and how you can get started with it. And if you get your insurance, the United States Veterans Administration, I think you might like the answer you get back about what Dexcom costs. And of course, that on the pod tubeless insulin pump that Arden's been using since she was four years old, that's over 12 years now, you can get a free, no obligation demo today by going to my omnipod.com Ford slash juice box. There are links to the sponsors and all the sponsors of the podcast right there in the show notes of your podcast player, or at Juicebox podcast.com. If you're not listening in a podcast player, you should they're free, and they're terrific. And they're right there on your phone. And if you're listening in one and you haven't subscribed yet, please hit that subscribe button. Okay, you ready for Sarah?

Sarah 3:23
I'm Sarah. I'm the mom of two kids. Maya is 12. She has type one diabetes and has for almost two years now. I have a son named Finn, who's almost eight. And he also is looks to be headed toward type one diabetes, but is not yet. And then my husband Jeff also has type one. And then on top of the type one, all three of them have celiac also.

Scott Benner 3:54
Holy God. Okay, hold on. This is gonna take notes. Give me your daughter's name one more time.

Unknown Speaker 4:03
Maya,

Scott Benner 4:03
Maya, Maya is 12. Probably for two years. Finn is on his way. Everyone has celiac. including you.

Sarah 4:15
Not me. I'm the only one that doesn't. Wow.

Unknown Speaker 4:20
You got screwed, huh. Look at that

Sarah 4:22
time. Yeah, I'm the odd one out in the house.

Scott Benner 4:24
That's a nice way to think about it. I see. I said one thing and you had a much better reaction. I thought. You get the short end of the stick. You're stuck with all these people with celiac and you're just like, No, it's okay. I'm the odd one out. That's, yeah, that's interesting. So I am going to ask you a lot of questions, obviously. Okay. How long have you been married?

Sarah 4:45
We have been married for 17 years.

Scott Benner 4:49
He almost said too long.

Unknown Speaker 4:51
17.

Scott Benner 4:52
That's what he would say. Ah, I bet you he wouldn't say that where you could hear it. Did he have type one when you You met him?

Sarah 5:01
He did not well, bait and switch, bait and switch. So he probably did. Looking back on it. Oh, and we didn't know. So he was diagnosed when he was 27 I think, yeah, 27. But he had had symptoms of diabetes for a long time. And they just didn't get severe enough to really notice it. Understand until right before he was diagnosed, how long do

Scott Benner 5:33
you think is a long time?

Sarah 5:36
More than five years? Wow. Easily more than five years looking back? Was

Scott Benner 5:41
he ignoring something? Or was it just not harsh enough to force him there

Sarah 5:45
was, there was probably a little bit of that. And we didn't really know it at the time. But pretty much all of the men on his side of the family have been diagnosed as type twos, late in life, but they're all tall and skinny. And now looking at it, we think they're probably all actually type one. And it's just like a really slow onset.

Scott Benner 6:13
Any people left over that can check on that are these from past generations that are gone. So

Sarah 6:17
he's got I think he has one uncle that's still alive. That I think did eventually get diagnosed with type one. But yeah, like his grandfather was told he was type two, and there's no way he was type two. So we think it's just whatever type of type one runs in the family is like this really slow progressing. Then Maya was kind of the anomaly getting diagnosed as a child. Okay.

Scott Benner 6:51
Also being a female, right? Because the rest of our men,

Sarah 6:54
yeah, yeah. So she was the first female in the family. So then that kind of makes me wonder, I'm like, Well, I must have some genetics on my side, too, that might be contributing to that. So

Scott Benner 7:06
helping will say, Oh, yeah, that's all. Okay. All right, Jeff, diagnosed 27. Now, celiac, describe for me, how does it impact everyone the same way in the family? Or does everyone have a different experience with it?

Sarah 7:26
I would say the symptoms are similar, the severity in how they react is a little bit different. Like Jeff went through a long period of time where he traveled a lot for work. So he would always get we say, glutened, on his trips. And, you know, a lot of times it was just mild stomach issues, some joint pain. But like Maya, when she was younger, you know, she would react so strongly she would vomit. It was really, really awful.

Scott Benner 8:00
What kind of foods do that just for people to wrap their brain around? Like, throw a couple examples at me? Well,

Sarah 8:07
I mean, so really, it's like with celiac, you have to be on a really strict gluten free diet. eating out is usually where the gluten contamination tends to happen. So it's like even if we went to, like, Can I talk about a specific chain? That's really good. Hey, celiac.

Scott Benner 8:26
What do you think and I should have missed the sponsor, and you don't want to give it away for free. What was your thought there.

Sarah 8:32
So like, in and out burger is awesome. And they have a, they have like a dedicated griddle where they cook patties, and they don't cook any of the hamburger buns on that griddle. So it's like, even just that little bit of cross contamination is enough to make them sick.

Scott Benner 8:48
So when in and out says gluten free, they mean it and they come through. Yes. Whereas other people might say, hey, look, the ingredients are gluten free, but I did use the same griddle to warm your bond that I warm somebody else's bond on?

Sarah 9:00
Well, and now there's this really annoying trend at restaurants that's called gluten friendly, or gluten sensitive. And pretty much we see that and that means like, run the other way. find somewhere else to go.

Scott Benner 9:13
Really what gluten friendly or gluten sensitive. What could that possibly mean? Like we're

Sarah 9:18
kind of careful. It means I think we're gonna say like, we Yeah, we do our best. We don't intentionally add anything that contains gluten, but we're gonna cook your food in the same pan as everything else and all of that. So really, for somebody with celiac, that's pretty useless.

Scott Benner 9:37
Gotcha. Here we offer the gluten dice roll.

Unknown Speaker 9:41
Exactly. If you get lucky

Scott Benner 9:42
and the chef takes a big white towel out and really buff the pan out real good before he does your thing. You might be okay.

Sarah 9:48
Yeah, it is. It's like Russian roulette.

Scott Benner 9:50
That's hard to put on a song. Yeah, we

Sarah 9:52
Yeah, we don't we don't do that.

Scott Benner 9:55
Gluten friendly,

Sarah 9:57
gluten friendly, which is not friendly. When you have celiac? No kidding.

Scott Benner 10:01
I feel like I might be gluten friendly. Like, I don't mind it. And if it was a person, I'd probably say hi. That's that's pretty much what I'm getting out of that. Okay, so if he travels, that becomes more of an issue. If you really need to lock it down. What do you do in that situation? You bring things with you, what do you have to build time into shop when you arrive somewhere? And how do you prepare a hotel room,

Sarah 10:26
he will bring some stuff with him. But most of the travel was International. So it's kind of hard to bring a lot with you when you're traveling to Guatemala or Mexico or anything to declare Sinaloa going all over the place. So yeah, it was like he just bring a bunch of like, protein bars, and stuff like that. And when he had to live off of those he would. But really, the US tends to be where he would have the hardest time traveling and staying gluten free. You know, you go to a lot of other countries and like the food is what it says it is.

Scott Benner 11:06
It's obvious you can I was just talking to ya, my daughter's friend last night who made the assertion that subway made an amazing sandwich. And I said, I feel like you're wrong about that. Because I've heard that all of their meats are based on the same meat, which you know, and then she's like, well, I'm vegetarian. I don't eat the meat. And I was like, Yeah, but the rest of it even like, I mean, I don't notice a mixer back there. I mean, they always bake the bread in front of you, but I've never seen them make it maybe I'm wrong. Like, I have no idea. I'm just like, but anyway, that conversation led to an idea of you should be able to look at your finished food, and deconstruct it and end up with ingredients you can describe that are natural, like, that's good. You know what I mean? Like, that should be your goal. I said, I was like, you know, if you get a pizza made, you know what a chain, you know, it's possible that those crusts are pre made and frozen, which then puts preservatives in them and coloring and everything I say if you make a pizza at home, you can be pretty sure it's flour and water and salt and olive oil and tomatoes and cheese. You know, you can control those things. And she stared right through me and said, there's a man at my subway that makes such a good sandwich. I was like, okay, she's not listening to me. But anyway, that was the, the idea. Like you should be able to deconstruct. So you're saying in other countries, they're using more staple ingredients that are identifiable?

Sarah 12:33
Yeah. I mean, you go to Guatemala, and you order a steak and you know, it won't be doused in, you know, some kind of steak sauce or anything like that. It's literally just a grilled steak. Okay, well, billions or whatever. Right?

Scott Benner 12:48
Right. Okay. And now if he gets something by mistake, is there any stopping the train that's coming? Or do you just have to make your way through it? You just have to live through what happens next?

Sarah 12:59
Yeah, it pretty much you just have to kind of wait it out. You know, he used to take under these little like, what are they called? I think they're called gluten aid. They're a little enzyme pills that are supposed to help digest gluten. Like if if you accidentally get gluten. And he seems to think that those kind of shorten the duration you know, if he accidentally accidentally does get gluten but you pretty much just have to write it out since it's, you know, an autoimmune response. And there's not much you can do to really stop it. When you say write it out. You mean in a room that mostly has a tile floor? Not not that bad. Although it could be depending on the dose, like if you fall on ate like a piece of bread, it would probably be pretty ugly. But you know, with with just minor cross contamination, it's like, yeah, you might feel uncomfortable for a week or so. And, like for him that results in joint pain, like feels like arthritis.

Scott Benner 14:00
Jeez. And Sarah, between you and I as people who can eat gluten. How great is bread? Oh my God, oh, bread, wouldn't you?

Sarah 14:10
So I don't because I don't eat it often. Now when I do eat it. Like I don't feel right. So I'm like I think my body got so used to not eating it. But now I eat it. I'm like, Oh my gosh, what is this?

Scott Benner 14:23
Sir? Did you make your own friendly? Did I What did you make your body gluten unfriendly?

Sarah 14:29
I think I might have. Yeah, accidentally. I always joke that the only thing that I have in the house that contains gluten is beer. Because I feel like like they're in bottles. They won't touch anything like that's the one item that I haven't given up but yeah, pretty much everything else in the house is gluten free because with two kids like I don't want to worry about them going into the cupboard and grabbing something by accident.

Scott Benner 14:56
So you are de facto gluten free because three people Your family are as well. Yeah,

Sarah 15:00
for the most part. Gotcha. Yes, that may not not strict. But

Scott Benner 15:05
I hear what you're saying is has that made a health difference for you? Or if you can tolerate gluten, not having gluten really doesn't do anything?

Sarah 15:13
I yeah. I don't know that it really has made a difference for me. Yeah, I think because I don't have celiac, it doesn't really. I don't notice any difference.

Scott Benner 15:25
I asked. Because when I was figuring out that, I'm not sure if I've spoken about this or not. I've lost the timeline of when I said things at this point. But my body does not retain ferritin. It's a genetic thing that we're just starting to figure out. Right. But yeah, as the, you know, as I was digging through the myriad of possibilities that this could be, you know, one of the doctors says, eat gluten free for me for six months. And I was like, okay, so I did it. And nothing about my life got better. And I found that discouraging. I was like, I thought I would at least be taller or handsome, you know, like or just like lose 10 pounds, just because I made the effort because I really did. Like I was eating those. You know, like, if I bought bread, it was this gluten free bread. That was like $9 million dollars for like a hamburger roll. And so I was really strict with it. And then when once it was clear that gluten wasn't my issue. I was like, what a letdown. Like,

Unknown Speaker 16:20
yeah, you know,

Scott Benner 16:21
it didn't do anything for me at all.

Sarah 16:22
Yeah, yeah. And I think, yeah, I think sometimes some of those malabsorption issues that tends to be the go to is cut out gluten. But yeah, it's expensive. It's hard to stick

Scott Benner 16:38
to No kidding. It turned out what I needed was a rusty bag of water injected into my veins. So that there you go, is an oversimplification, right, I get something called injector for, and it genuinely does look like someone took a handful of rust and dissolved it into a bag of liquid and then just pumps it into you. And it is life changing.

Sarah 17:02
Do you feel right away? Do you feel the effects of that energy come back?

Scott Benner 17:07
No. So what has to happen is it has to get in and then your bone marrow has to pull it back in. So then in the process of oxygen sticking to cells correctly, blood cells correctly, that oxygenation happens. And then it happens. So what it feels like is that somebody slowly turns my dimmer up over about two weeks and then one day, okay, bulbs are just really bright. I don't notice that I got there. But it's it really is interesting. And we've now done some testing I haven't found out yet. But my son who is like a college athlete, and it looks like an underwear model get you know, like and he got his well visit done. And I just said to the doctor, I was like Adam Adams been on the show. I was like Adam, like, check his ferritin. And he's like, that's not gonna be a problem. And I was like, come on, just do it. Right. So he does it. And Cole's ferritin is super low like mine.

Sarah 18:02
Oh my gosh, yeah. So now just some genetic thing. Just lucky, I guess.

Scott Benner 18:07
Yeah. And so he's going to try and infusion next week. And if that helps them, actually, I think he's going to refer to a research scientist at Harvard who's working on this stuff, because it's incredibly uncommon to begin with, and even more uncommon for more than one person in a family to be dealing with it.

Unknown Speaker 18:25
So interesting.

Scott Benner 18:27
Yeah, so good. Good for us. Look, look forward to the the low iron podcast in 2025. I don't think that's gonna be a thing. But it really it really is crazy, because what happens next is that everything fundamentally about how I think and feel and how my body operates. gets better. Yeah, it's crazy.

Sarah 18:51
Yeah. That's, that's great that they figured it out. And Nice, nice for your son that he wasn't the first one. And then you're stressing that there's something really wrong. And

Scott Benner 19:00
yeah, that was important to me, Sarah, because I'm adopted. So if somebody went through this before me, I didn't know. And I just thought I'm going to fix By the way, it was nice you to say it was nice that they figured it out. But we figured it out without internet and finding research articles, because it's such an odd thing, that doctors just don't have a pathway in their brain to get to. Is it possible because my CBC My, my, my complete blood count count, I guess that's what that is, right? It looks perfect, with the exception of my ferritin.

Unknown Speaker 19:33
Okay,

Scott Benner 19:34
it almost looks like it's a mistake on the thing. And I'm not saying I'm super healthy, but my labs are all really good. And then this isn't, then you take it to a doctor and you know, then they go down the pathway of well, you probably have cancer, that's where it starts is your bleeding internally and you don't know it, obviously. And they're like, because you're not getting your period and I was like No, I do not get a period. I am just a stay at home dad. And so You know, that all happened. And then I went through that entire process. And then it got to the point where they were just sort of like, well, I guess this is how you are. And I was like, Oh, no, no, no, like, that's not happening to me. Because I get really, I can get kind of shaky when it gets low. Yeah, it's not on purpose. It's a really interesting thing that happens, where if I get involved in a disagreement with something, and it doesn't have to be like people like standing on either side of the room going red, blue, it's not like that. It's just like, if something happens, and it hits me, and I'm not able to prepare for it. When my when my ferritin is low like that, I start having responses out loud, that I don't feel in my heart or think in my head. Right, I come off like a real. And while it's happening, my brains going, why are you saying that? We don't think this, like, why is this happening? And I stopped myself. I'm like, I'm sorry. I don't feel this way. Like, I'll just and I have to, I can't stop myself. And I'll get foggy and dizzy when it gets really bad. And my muscles go to jelly. And I lose my ability to digest food. Well, like everything goes to hell. It's really crazy. So I have a lot of empathy for your kids and your husband and especially for stuff like this. And because it's bread and my god bread, so good.

Sarah 21:20
Yeah, that was that was hard at first, I think actually, we we always joke that we think what put him over the edge for his celiac diagnosis, because that came like think, two or three years before he got diagnosed with diabetes. But he had gotten me a breadmaker for Christmas one year. And so I was making bread, like every other day. And just the two of us were consuming an entire loaf of bread every other day. And then he started getting really sick. So I think it was the bread machine that actually

Scott Benner 21:56
like, like his, his, his celiac friendly belly was holding on by the by just by the skin of its teeth. And you were like I can fix this with nine loaves of bread a month.

Unknown Speaker 22:07
Exactly. Yeah, she's

Unknown Speaker 22:08
I mean, looking.

Sarah 22:08
He knew looking back on it. He had it as a child too. But nobody knew about it back then, like his mom had taken him to the doctor. And you know, it wasn't because she wasn't trying. It was just nobody knew what that was.

Scott Benner 22:22
Jeff was just the kid that after pizza disappeared for an hour.

Sarah 22:26
Yeah, you know, he didn't even have, he said he didn't have any of the digestive stuff. But like, his joints hurt all the time. And like, you know, he's I think six foot two now, but he was five foot two until he was 18 years old. And that's another one of the things that happens with celiac as kids like they just grow really late.

Scott Benner 22:47
Yeah. Is that something? Anything else? I don't mean to pile on. But anybody got a hypothyroidism or is there any other things going on there?

Sarah 22:56
So he has hypothyroidism and so this is mom. So we're kind of waiting for that. That one to drop on my Oh, we know that'll be coming. Yeah, I think that's it.

Scott Benner 23:10
You're in luck. Because, well, family Well, before this posts, I'm going to have an episode up with a really great doctor for hypothyroidism. And I have been looking for that person for my wife and daughter's entire life. And I found her this year. And I am she's going to come on the podcast and I am going to grill her because no one understands it well enough that, you know, a lot of people who treat people with hypothyroidism are just saying, Look, your labs are falling in a range or out of range. Here's a pill it's back in range. You're fine if anything else is wrong. It's not your hypothyroidism and that's not true. And I'm I found the lady. I found her. So awesome. Yeah, I'm excited about that. Okay. Nuts and Bolts in your day. What do you do to cook for people who have celiac? What are your meals look like in a week?

Sarah 24:02
You know, I don't even really think about it anymore. Because it's it's been such a part of our life. You don't really it's like most most basic foods that don't include obvious wheat or gluten free. You know, meat, rice, potatoes, fruit. You know, there are a lot of good gluten free products out there now. So Foster Farms makes these gluten free corn dogs that the kids are obsessed with. So that's been lunch a lot of days since we've been home. And I don't know if it gets easier once you've been shopping a while but I do remember the first few trips to the grocery store. After Jeff was diagnosed, it was like two hours reading labels and it was really not fun.

Scott Benner 24:51
Do you have a fundamental increase in your cost for food?

Sarah 24:55
Oh my gosh. Yes. How?

Scott Benner 24:57
How much do you think like what percentage Do you think your bill went up having to go shopping like this?

Sarah 25:04
I would bet. If I had to guess I'd say like 30%.

Scott Benner 25:10
Whoa, that's not okay. Yeah, that's it, your health insurance to cover that?

Sarah 25:16
Well, and and honestly, if it weren't, so if we weren't shopping for kids also, like, Jeff doesn't eat the frozen gluten free waffles and all that stuff. Like, we wouldn't be buying those things. But you know, when you have two kids, you want them to be able to eat as normally as possible and not have to feel like they're missing out.

Scott Benner 25:37
You don't want to suck all the joy out of their life. Yeah, but we're okay with Jeff not being happy. But the children should have some joy. I hear what you're saying. He just

Sarah 25:44
doesn't even care about that stuff. You know, that's not what he enjoys eating anyway. So we would eat a lot more simply, I think, Well, I

Scott Benner 25:52
think the good news is the two of us, then the good news is you do figure it out. The bad news is you figure it out, and it costs more money. And if you're working for people in your family, I mean, I'm not asking you what you pay a month, but that's, that's a fair amount of money. So it's a lot. Yeah. Oh, geez. This, this is a this isn't fun. It doesn't have any impact on diabetes care, insulin use, things like that.

Sarah 26:22
You know, the only thing we've ever noticed, is like if either Jeff or Maya, get glutened. You know, it can kind of mimic like if you have a stomach bug coming on, and your insulin needs go down for a few days. But other than that, we haven't really seen a big impact on diabetes management.

Scott Benner 26:45
I feel like you're trying to name this episode, get gluten. Get gluten. I don't know if it's gonna happen or

Unknown Speaker 26:51
don't don't get gluten.

Scott Benner 26:55
I think Sarah got gluten by these three people is what I'm saying

Sarah 26:59
that Yeah. Sarah got anti gluten or,

Scott Benner 27:03
hey, I have to ask you just quickly, you're on Instagram, right?

Unknown Speaker 27:06
Yes.

Scott Benner 27:07
So you realize that in my mind, you are that Instagram handle? Like that's your name?

Unknown Speaker 27:13
Ah, okay. That's what you were talking about at the

Unknown Speaker 27:15
beginning talking

Sarah 27:16
about because my name is in my Instagram handle. But

Scott Benner 27:21
okay, do you want people know what your Instagram is? Or? No, no, I don't. So it's Sarah joy dances, right?

Unknown Speaker 27:27
Yes, it is. What's

Scott Benner 27:29
the dancing about? Is that you dancing, trying to escape the grocery store without paying? Or, you know,

Unknown Speaker 27:34
you would you would think that lady's running off with fake bread?

Sarah 27:41
No, so I grew up dancing. And up until just a couple years ago was doing adult ballet classes. So I just loved dancing. So that's my Instagram handle.

Scott Benner 27:53
But you just need to understand and this is meaningless in your life. But in my life, your Sara joy dances, there's no right like I if you paid me to know your last name would never happen, even though we've emailed a number of times. And I've seen it I just It doesn't matter. It pops up in my head like that over and over again. It's just very, it's very interesting how social media does that. Like I could? Yeah,

Sarah 28:16
it does. Yeah, yeah. You totally attach those names to people.

Scott Benner 28:21
I just think that when people say like, oh, the guy on the podcast said, I think that's reasonable. Because functionally I am the guy on the podcast guy. Yeah, I feel like they know my name and they don't care. And I feel similarly about when I meet people in odd ways. So anyway, that's all I had to say that out loud because there's something about the the I like the bounce of the words. Now, if that makes sense or not, there's a pantalla. Sarah joy dances that makes me happy when I read that. So okay, I don't know if he did it on purpose at

Sarah 28:52
it. I did not. I just, I think I chose it because I enjoy dancing. But I'm glad that it rolls off the tongue. Well,

Scott Benner 29:01
it also makes me feel like you're happy even though I'm just assuming it's your maiden name.

Unknown Speaker 29:07
Though. What's my maiden name?

Scott Benner 29:09
is Joey your maiden name?

Unknown Speaker 29:10
It's my middle name.

Scott Benner 29:11
your middle name? Got it? Yes. Okay. Okay. Yep. So you always seem happy to me? Because my brain is really simple.

Sarah 29:21
I don't know. Yeah. Maybe less so over the last five months of being stuck at home. But yeah,

Scott Benner 29:28
just telling your story in my mind. You're that little girl from the peanuts who just is dancing and dancing and dancing and dancing. I'm sure your life has nothing like

Unknown Speaker 29:36
I'm not No, I would say I'm not quite there. Do you

Scott Benner 29:39
find that now? We should figure out which girl in the peanuts is the dancing girl or whatever. You know what I mean, though, right? Yeah.

Unknown Speaker 29:51
Yes. Yeah.

Scott Benner 29:54
Tell me a little bit about Don't worry about it. I'll google it for you. Tell me tell me a little bit about About your daughter's diagnosis, please.

Sarah 30:03
So she has a really interesting story. And I think this is kind of why I had contacted you, you know, with interest in coming on, because she was a super early diagnosis. And I found when she was diagnosed, I couldn't find anyone that was in our situation. So Maya, let's see, she was diagnosed in August of 2018. So we're coming up on two years. And the only thing that clued us in that there was something going on is we had gone to our state fair, we live in California, and the kids right before we left, they wanted to get a treat. And so they got one of those, like dole whip, like that frozen yogurt kind of stuff made with pineapple. And so they each had, you know, this big dole whip. And then on the drive home, I kept saying, she felt really weird. Strange, you know, and, you know, the whole way home, she kept saying, I feel really strange, something's wrong. And so we got home. And it wasn't like, we were regularly checking her blood sugar normally, like, because we hadn't seen any signs of diabetes really ever. And so we pulled out Jeff's meter and like, let's just check your blood sugar because he did just eat, you know, a lot more sugar than you normally one sitting. And I think it was like 225 or something. So it was it was high wasn't considering what she ate. You know, she ate something like that. Now with no insulin, it would be

Scott Benner 31:50
I was gonna say faster. your perspective? No, yeah.

Sarah 31:53
Yeah. Yeah. But it was like, Okay, I knew that wasn't right. So. So I think we, we got her in, I think first to see a pediatrician. And they happen. They checked her a one C and that came back and it was 5.4.

Scott Benner 32:12
So we just caught it at the beginning, then.

Sarah 32:14
Yes. So but because we had, you know, the incident after the state fair, we kind of kept checking her blood sugar, especially after eating Carvey meals and it was regularly getting over 200. So we're like, Okay, this isn't right. So I think at that point, we asked for them to check her antibodies, and those were positive. So then we were able to get her in to see an endocrinologist. But yeah, it was like, the strangest experience because really, her diagnosis just consisted of a normal office endocrinology visit. We went in on a I think it was a Friday afternoon. Because our family, our tradition is on Friday evenings, we do pizza, and we eat dinner on the living room floor and watch a movie. And so I remember it was Friday because it was pizza night. And they literally just sent us home. They're like, here's your prescription for some insulin. We want her to take, you know, this really small amount. I think they started her on like a it was like a one to 50 carb ratio. And no basil. At first. She took no long acting, acting for probably two months. Yeah, and we just we went home and picked up the insulin at the drugstore. And did you get that? Is it on the floor? Yeah.

Scott Benner 33:44
Question about that. This is very important to me. It's gonna seem like a sidebar to you but hardwood or carpet.

Sarah 33:51
So we have hardwood but there's a big rug down.

Unknown Speaker 33:53
Okay, pets. Yes, dog.

Sarah 33:58
So we have one dog now, but at the time we had Well, we still just had one dog at that time, but it was different talk.

Scott Benner 34:07
Would you like a bizarre look into my mind? I would love to sit on a rug. But when I own a dog, I can't bring myself to do it. There you go. That's it right there. That's that's the entire ball of wax. I just I'm like, I don't know there's hair down here. I don't want to be a part of it.

Sarah 34:24
So I do have to say, and this is gonna sound kind of gross.

Scott Benner 34:29
Finally say something gross. Okay,

Sarah 34:32
so the rug, the rug that's in front of the TV. That's like, that's the good rug. We have another rug that's like out closer to where our sliding doors in the backyard are. And when things happen with the dogs, it tends to be the other rug.

Scott Benner 34:48
There's a good there's a fitness and there's a dog get over there. Snoopy rug.

Sarah 34:54
Yeah, there's like the rug that the dogs gravitate toward when something's wrong. And then the one They they leave alone. Gotcha.

Scott Benner 35:01
I'm gonna ask you in a minute about the differences between Maya and your husband's management. But before I do, I'm going to show you the very strange thing that I learned about the peanuts while I was online. So I found an article called like, it's something about like, the peanuts characters you don't know are the names you forgotten. And I see that the two little girls at the play who are dancing, who were the ones I was thinking of, are twins. And I was like, Ah, that's odd. And then I noticed this 55595472 it says one of the most bizarre characters in the peanuts universe was 55595472, or five for short, introduced in September 1963. Five explained that his father was so upset about being seen as just a number, he renamed the entire family as a series of digits. This is probably from the comic strip, right. The last name is taken from their zip code, though when spoken, five insists there's an accent on the for the zip code, by the way, is actually the real one for Sebastopol, California, where Charles Schulz lived at the time. five sisters three and four made a few appearances in the strip before disappearing, but five was occasionally a background character until 1981. You've probably seen three, four and five already and didn't even know it. All three appear in the famous dance sequence in a in a Charlie Brown Christmas, which is where I know them from. And the four Okay, three and four are the twin girls in purple dresses. So, anyway,

Sarah 36:45
that will be the most random thing I learned all day.

Scott Benner 36:48
I think that that's the strangest thing I've ever said on this podcast, too. And anyway, I and most people have been like, what are the peanuts? But Snoopy?

Unknown Speaker 36:59
I'm old enough to know the peanuts. Yeah,

Scott Benner 37:00
Lucky you. celiac and old.

Sarah 37:04
Right? Yeah, I tried turned 40 this year, when I'm proud of it. I'm happy with it. So let

Scott Benner 37:09
me tell you what I told my son the other day when I turned 49. I said there are two options. Turn 49 or die. I was like, Oh, yeah, I'm gonna go with 49 It sounds okay. Right.

Sarah 37:20
Not everyone gets to reach that age. So flip

Scott Benner 37:22
it upside down means I'm still going. Not that 49 is old by any point. But you know, know, when your kids 20 they look at you like you're 1000 when they say you're 49. So yeah, a lot of fun. Alright, so we've learned something about the peanuts. We've learned a lot about celiac. And now And now I'd really like to know. Is there are there multiple management styles in the house? Does your husband do it one way your daughter does another way are we all on the same page, MDI pumps, glucose monitors etc. pumps, glucose monitors and etc. My my I have that here. Let's start with the etc. It's easy, touched by type one.org. Check them out at that address or on Facebook or Instagram. And don't forget I'm doing a little thing for him on February 26 2021. I'd love to see you there. Now pumps. Arden has been using the Omni pod tubeless insulin pump since she was four years old. At that point, she had had diabetes for about two years, and she was getting ready to go to kindergarten, my wife and I decided that we didn't want her to go using syringes. So we did our due diligence, we looked hard at all the other pumps that were available. And at that point on the pod seemed like the clear choice to us. In no time we knew we made the right decision. And now even in hindsight, I can say I'm glad we chose the Omni pod. As a matter of fact, if I had to make the decision all over again today, I would do the exact same thing. Omni pod has come a long way in 12 years. And I'm pretty excited about where it's headed in the future. So listen, how you going to take my word for it right? This is an advertisement. Somebody's paying me to say this. Well, you could find out for yourself. You can go to my omnipod.com forward slash juicebox and Omnipod will send you a free, no obligation demo. It's a non functioning pod that you can wear and see what you think for yourself. Right? You put it on your shower. Oh yeah, you can shower with your pump on if you have an omni pod. You can go swimming. see other things you can do with other insulin pumps swimming. You also might have a hard time with other insulin pumps walking past the doorknob without getting your tubing caught on it and ripping out your infusion set. That won't happen with the Omni pod because the Omni pod is tubeless but you don't need me to sell it to you you need to see it my Omni pod.com forward slash juice box links in the show notes. Links at Juicebox Podcast comm give it a try and see what you think. Would you love a continuous glucose monitor? You don't know where to begin? For me? I'd begin@dexcom.com forward slash juicebox Arden has been wearing some version of the Dexcom for Evers forever. I don't know how to get But she's worn oh my gosh, the G six which she has now she's one of the G five version before the g4 the version before that there was a seven plus before that not sure how they went from seven to four to five to six. But that's nothing to really talk about right now. The point is, Arden has been wearing the Dexcom for four generations of the product, and it just keeps exceeding expectations over and over again. dexcom.com forward slash juicebox check it out for yourself, right. That's what this is all about. I'm going to tell you about it. You go take a look. Don't take my word for it. See what you think. But what I can tell you for sure about Dexcom is this. I can see Arden's blood sugar on my phone. I am not holding my phone right now I've picked it up. I've swiped up, I've put on this Arden's blood sugar is 102. As a matter of fact, I can see that for the last 12 hours, Arden's blood sugar has been between 80 and 102. Right now, it's pretty amazing, isn't it? I see that on an app on my iPhone, I could also see that on an app on an Android if I had one. As a matter of fact, up to 10, people can see that if you want, like a school nurse, or your mother, or somebody to help anybody you want to have involved in your care. I know what you're thinking, that's a pretty good number, right 80 to one though, it is. We do that by using the data that comes from Dexcom to make Bolus decisions that we make through the Omnipod. Sometimes their Temp Basal increases or decreases or extended Bolus is depending on the meals. It really, you know, there's so much that we learned from the data, it just makes dialing those settings, getting them right. So, I mean, I just find it to be so much more easy. So much more easy, easier. Have a made up a word. So you didn't have to say so much more easy. That makes a lot of sense. Listen, our results are ours and yours may vary. But I know one thing for sure, having great tools and knowing how to use insulin is the basis for success with Type One Diabetes. Get yourself a free no obligation demo of the Omni pod today at my omnipod.com forward slash juicebox. And learn more about the Dexcom and get started@dexcom.com forward slash juicebox. And of course, don't forget touched by type one.org. Back to Sarah, Sarah, Sarah. I'm having trouble talking.

Sarah 42:19
So my husband has always been MDI and he does really well with it doesn't have a lot of incentive to change. He likes the simplicity of it. And with Maya, we got her on an omni pod, I think about two months after she was diagnosed, maybe three. And really early on, it was kind of out of necessity. We found it was really hard. Because she has always been in this honeymoon phase, you know, it was really hard managing on just these half unit increments that we could do with the pens. So pretty much right away, we were talking to the endo about getting her on a pump and listening to this podcast. And you know, just all of the contacts that I have with people on Instagram, I realize how lucky we are with her endocrinology practice. They've been super supportive of pretty much anything we wanted to try. And they didn't pull the whole like, Oh, you need to be MDI for six months or any of that or, you know, hear people talk about the endo not wanting to put them on a pump until they're using a certain amount of insulin per day. We didn't encounter any of that.

Scott Benner 43:46
You just they just were helpful and understood. Yeah, we're in the Yeah, we're in the country. Do you live?

Sarah 43:52
So we live near Sacramento? Okay. We're kind of right in the middle of California. The hospital that we go through, you know, so Research Hospital. So I think the mentality is a little bit different.

Unknown Speaker 44:10
very progressive, and yeah,

Sarah 44:13
a lot more a lot more progressive. Because even now, when I, when I think about them sending us home with insulin, you know, when she was needing so little, like, I kind of freaked out. And in my mind, I'm like, Oh my gosh, like, I can't believe they just sent us home. But But you know, that's what she needed. And you made it work.

Scott Benner 44:35
Do you think some of that is just because your husband had type one and they were just thinking like, well, they must know what to do.

Sarah 44:40
I do wonder that? Yeah, I I suspect that that probably had something to do with it. I think if we hadn't had that background. You know, because Maya wasn't in bad shape physically. I don't think that they would have I don't think they would have admitted her to the hospital. But could see, you know, having had a much more in depth visit,

Scott Benner 45:04
but they might just feel comfortable about it.

Sarah 45:07
Yeah, it could be.

Scott Benner 45:08
Yeah. And so if they had that assumption, was that a fair assumption is your husband's like, like, how does he manage? Does he make out? Well?

Sarah 45:19
Yeah, he he does awesome. Actually, it's kind of funny because he and my daughter will like compare their clarity reports. And I think his agency might be sitting just a little bit lower than hers right now. But I won't show her that because she'll get competitive. Oh, that's interesting. But yeah, he does he he manages to stay under six on MDI.

Scott Benner 45:44
That's excellent. Yeah, does he and it sounds like they're looking at clarity. So they're paying attention to to time and range and yeah, all that stuff. That's excellent. Yep. So it's, it's a healthy competition, then. Do you think

Sarah 46:00
it is? Yeah. No, they don't get too weird about it. But

Scott Benner 46:05
nobody, nobody flips out? No, no. They don't they don't fight the 50 yard line or anything like that.

Sarah 46:13
Nobody peels off somebody Omni pod or, you know, like, I'm

Scott Benner 46:16
ahead of you now. Your blood sugar's gonna go up, I'm gonna win. That probably wouldn't be okay. Or healthy. But I think it's so they have this in common. Do you notice a bond with them? That's that wasn't there before? Or is it stronger now?

Sarah 46:31
I do. Yeah, I do. And I think that's made a really big difference in Maya's ability to cope with it is knowing that she's not the only one in the house. I think that's been huge.

Scott Benner 46:47
I think I'd have to agree that that that seems like a bonus, honestly.

Sarah 46:51
Now, actually, I think if I talk about it too much, I'll start crying. But yeah, just having, you know,

Scott Benner 46:58
I could use some tears. It's good for the podcast.

Sarah 47:01
He's, he's a good role model. He's good. He's, he's shown her, you know, that it's important to pay attention and care what your blood sugar is. And you know, not that you have to deprive yourselves of things. But, you know, every once in a while, there are going to be circumstances where it's like, oh, I really wanted to eat ice cream right now. But I should really Wait. Let my insulin kick in. Right? That kind of thing.

Scott Benner 47:27
While you were talking just now I devised an incredibly mean way to make you cry. And I'm not going to do it. I just want you to, but I could, if I wanted to. I was gonna start with terrible strife in the world, go to global warming. Ask if you ever think there's going to be an end to this COVID-19 pandemic? There's a lot right now. Yeah. And then I was just gonna ask you again about the connection between your daughter and your husband and then listen to your cry. And

Unknown Speaker 47:50
right now would be a good way to do it. I don't

Scott Benner 47:53
need you to cry. And that's a beautiful thing. I wonder this? Because you said and then need to dig into this a little bit to ask the question. But you said you think fins on his way did you have his antibodies tested.

Sarah 48:05
So the interesting thing with him, he is antibody negative right now,

Unknown Speaker 48:11
okay.

Sarah 48:12
However, he goes through phases, and they seem to come and go, where he has blood sugar regulation issues. So our endo pretty much thinks. So I was always under the impression that usually the antibodies preceded the blood sugar management issues. But I guess it can actually go the other way around. Also, where sometimes people will actually have trouble regulating their blood sugar before the antibodies show up. So that's essentially what our endo thinks is probably happening. For him, we just kind of have to keep an eye out. So we get as a one c checked a couple times a year. And they antibodies. So right now, it's like he's been sitting at about a 5.6 5.7 a one C. So it's like, just bordering on that pre diabetes range.

Scott Benner 49:16
How I have a question here, and I don't know how to form it. How does it present low blood sugars or high blood sugars? And does he feel like

Sarah 49:24
high blood sugars? Yeah, and he'll feel it he'll actually says he feels shaky. Which is kind of funny. But yeah, like there have been a number of times where he's like, yeah, I feel funny, and we check his blood sugar and it can easily be, you know, 180 he's had times where he he will hit 200. So when he's going through one of those phases, we just kind of have to watch the carb intake.

Scott Benner 49:53
How long do they last the the phases?

Sarah 49:57
You know, it seems like it's been like in Two or three month little stints that seem to happen. Like he'll go through a phase where we have to really watch his diet. And then we'll go through a phase where it's like, nothing's wrong.

Scott Benner 50:10
It took me by surprise there. I didn't think you'd say that long. That's interesting. Yeah, Fox, I'm sorry. Huh? Will he wear a glucose monitor? When it happens?

Sarah 50:24
Yeah. So we actually, when this first started happening, or when we first caught on to it, we had hoped to get approval, even just for short term to just throw a Dexcom on him and see what was going on. But without a type one diagnosis. The insurance companies won't cover it. So

Unknown Speaker 50:46
that was nice.

Sarah 50:48
Yeah, which is fine. I mean, he doesn't seem to mind the finger sticks. Actually. He's, he's funny. It's like, he's very much an engineering kind of mindset. And he likes data. So he actually like he enjoys pricking his finger and seeing the number and like, oh, what does that mean? You know, how old is he? Again? He's, he turns eight on Saturday. So we're two days away from his eighth birthday.

Scott Benner 51:14
Well, congratulations, and Happy birthday.

Unknown Speaker 51:17
Thank you,

Scott Benner 51:18
the acceptance part. Does he think he's getting diabetes at some point?

Sarah 51:23
He does. It's been kind of kind of tricky to talk to him about it. You know, because we don't even know what's going on. And so you know, we just kind of have to say, it looks like you might have diabetes. Like, like dad and Maya someday. And you know, he, he seems generally okay with it. Sometimes less than others, but

Scott Benner 51:49
yeah, I don't see where I would be okay with it.

Sarah 51:52
Yeah, it's, it's tough.

Scott Benner 51:54
Yeah. Or any bad news that crystal balls me when they were like, oh, guess what, when you're 35 hairs gonna fall out? Don't worry, you know, is that good that? You know? I don't think so. Thank you. So that's it. Yeah.

Sarah 52:07
But then again, it's like, you look at our household. And, you know, the three of them have celiac. So if the three of them have diabetes, it's like, you've got good company.

Scott Benner 52:18
Well, you should at least have a clan of people there who understand how to support each other in that.

Unknown Speaker 52:23
Exactly. Exactly. Well,

Scott Benner 52:26
yeah. Probably going to be probably going to be really interesting. I'm going to need to keep this podcast going another 10 years, at least I'd like that Finn on when he's getting ready to go to college. Yeah, that's my new goal. By the way, 10 years to get fit on right before college. I want to hear this.

Sarah 52:43
Oh, yeah, I'm like, I if we can delay it as long as possible. I'm happy with that.

Scott Benner 52:48
I would like to get him back on and have them go, you know, I never got diabetes. I just think

Sarah 52:54
that would be fantastic. Yeah,

Scott Benner 52:55
that'd be pretty cool. But that's, that's super interesting. So I think I think as we enter into the last quarter of the hour, after hearing all this, I got to understand if you're okay, and what you're doing for yourself.

Unknown Speaker 53:12
Um, yeah, I mean, I think

Scott Benner 53:15
smoking weed or something like what are you doing exactly, to relax?

Sarah 53:21
So funny that you mentioned that. Not that that's what I'm doing to cope. But my my husband, Jeff, he's actually a commercial hemp breeder. So he works on he develops high CBD, varieties of hemp. And he also works on lettuce and a little bit on raspberries. So yeah, he's a plant breeder, so.

Scott Benner 53:46
So let us raspberries and hemp.

Sarah 53:48
Yes. And he comes home smelling like hemp.

Scott Benner 53:51
So you got to slow down your what you said gives me questions. What do you go to college for to be able to do that?

Sarah 53:58
So he studied plant breeding. So for many years, he worked on melon. And then he, he loves to work at a small company where he now works on multiple crops, and his cluding

Scott Benner 54:14
family. Bunch of hippies like how do you like it? I'm trying to think about how much I send to college and it's cold told me I'm going to really dive deep on plant breeding. I'd be like, that doesn't sound like you're getting my money back. But it seems like first of all just doing really well. And it's just something that I don't understand. But

Sarah 54:32
yeah, it's just it's a super cool job. So ya know, his family. They're definitely not a bunch of hippies. Actually, it's, it's, it's kind of funny. He kind of like, Yeah, he doesn't talk a ton about his new job with his mom, but

Scott Benner 54:53
she doesn't like the hem part.

Sarah 54:56
I think she's I think she's getting comfortable with it.

Scott Benner 54:58
Let's give her some romaine. She'll be out Oh, yeah,

Sarah 55:01
no, the Romans fantastic. Here's the question. Do you guys have a garden at your house? We we do?

Scott Benner 55:08
Is it ultimate? Like, is it just the ultimate most successful home garden in the world? Or

Sarah 55:14
it's a pretty good home garden. And I'm not responsible for any of it. I I do not do well with keeping plants alive. So

Scott Benner 55:24
you're just eating the lettuce and I'm making quotes around the lettuce, because I'm assuming it's the wheat. But you know, just

Sarah 55:30
actually, it's mostly tomatoes and eggplant. Yeah. So do you live in California?

Unknown Speaker 55:37
Do you use CBD yourself?

Sarah 55:40
I have, um, I don't know that I've really noticed much of an effect. I know it's supposed to be good for certain things and have anti inflammatory properties. But yeah, I don't know that I've ever really noticed a big effect.

Scott Benner 56:00
You don't have to keep going. I want your husband to have a job. I'm just I'm trying to understand everything here. Because I've tried it in the past. And I thought to myself, I don't notice anything happening here. But I know people who run around yelling about it constantly.

Sarah 56:12
Yeah, no, I know, people that swear by it. And even a lot of people who I would think would not touch anything related to that plant that are are huge proponents of it.

Scott Benner 56:22
It's helpful for them. Yeah. Listen, whatever works is the answer. It's just interesting that your husband had joint pain. And he works with CBD. And I thought,

Unknown Speaker 56:30
right, right.

Scott Benner 56:32
Calling was he like, oh, finally I can help myself a little bit. That's really an interesting. Oh, can I get him here? Because my wife bugs me about a garden a lot. And I don't do it for it. And I feel like I would mess it up. And it seems like a lot of work to if I'm being perfectly honest.

Sarah 56:49
It is a lot of work. Yeah, he spends a lot of time out there. But yeah, we're all thankful for it when we have fruit and vegetables to pick, I would imagine. And you're

Scott Benner 56:59
in a good part of the country to do it, too.

Sarah 57:01
We are Yeah, yeah. You didn't grow just about anything here.

Scott Benner 57:06
I'm in the month in New Jersey, that if you walk outside, it just feels like someone like spritzed you with a hose. You're like, Oh, good. I'm wet. It's wonderful.

Sarah 57:16
Yeah, we, we don't have that humidity here. It's hot. But we don't have the humidity cold had

Scott Benner 57:22
a game the other night. And it went forever. It ended like 1115. It didn't start till like eight. And the humidity never broke. It was just like 89% humidity the entire time we were standing out there. The kids were soaked and it was unpleasant. And it was like I got home. My wife's like, hey, do you on like shower, getting a shower? Please? Don't getting a shower. Talk to you afterwards. You know? It's terrible. Yeah, I really want to go somewhere with low humidity. And not too much snow. That's where I would like to live out my days. If I can find that.

Sarah 57:57
Yeah, most of California fits that.

Scott Benner 58:01
Yeah, I want to be able to afford it too. So yeah, there's that I feel like I need I feel like I need a Montana house. For the certain times of year, I would like some open space. And then I need to run somewhere else in the winter where it won't snow. But right that again? Sounds like I'd have to have a lot of money. So that's probably not, you know, less you guys listen to the podcast more. That'd be nice. You want me not to be moist in the summer, you could just tell more people about the podcast and help me

Unknown Speaker 58:30
exactly.

Scott Benner 58:31
I'll tell you everything. It was that easy to get to that I I don't know what I would do. But that doesn't seem like it's that easy. But no, seriously, so we never really got to how you chill out like, what do you do?

Sarah 58:46
What do I do? I exercise a lot. I think that's been one of the one of the upsides of working from home and having kind of a, a different schedule that's not quite as rigid as when we were having to get everybody out of the house is I can throw on my headphones and go for a long run. You know, it's like all the gyms are closed right now. But the one I belong to does outdoor classes right now. And that's kind of my thing.

Scott Benner 59:22
If you didn't have that, and I am probably gonna, at some point make you cry here. But if you didn't have that, would you think you'd be overwhelmed with the idea of this isn't fair, or, I mean, how does it really hit you viscerally?

Sarah 59:38
I don't know. I mean, thinking about it. It's like if I were to write everything on paper, that that we deal with. It might look like a lot, but I think a lot of people deal with a lot more than we do.

So I guess I've just never seen it that way. And I think it's all kind of come on one piece at a time, too.

Unknown Speaker 1:00:00
But

Sarah 1:00:01
yeah, it's like we didn't get hit with everything all in, you know, within one year or something like that. So yeah, I don't know. I just I'm sorry. Okay. It's just, it's our life. And I guess I just haven't, haven't seen it. So I guess we have our challenges that we deal with. But then I see my friends and they have their own challenges that don't pertain to diabetes or celiac, it's like, they have totally different things going on that are equally as challenging.

Scott Benner 1:00:32
Yeah. No, I don't mean. So I think there's a couple of interesting thoughts in there. One is the idea of like, other people have it worse. But I don't think other people's bad stuff makes your bad stuff. Not hard. Yeah, no. But so do you use that? Is that sort of a? Is that sort of a crutch? like to say, look, other people have it worse. So I'm not going to let myself feel bad about this? Or is that a real kind of just life motto? Like keep going things are okay. Do you think

Unknown Speaker 1:01:04
it could be kind of a defense mechanism?

Scott Benner 1:01:10
Six months, like, Sarah was in a home, she she couldn't handle it anymore.

Sarah 1:01:16
I often say I'm like, Okay, if, if we ended up with a third kid, that would be what would put me into the loony bin right now. But no, I think, I don't know. And I think just so I'm, I'm a scientist. And I think I'm just very, like, I see things kind of in a practical way. And so I see, you know, I see diabetes, and it's like, Okay, what can we do to make this easier? Let's do that. And that's just kind of my approach to things. So I think that that helps kind of take some of the emotional component out of it.

Scott Benner 1:01:56
That's excellent. I mean, it's a lot going on whether like, it's like you said, writing it down might look worse than living it. But it's still, it's still a lot. There's time that's lost. There's energy that's lost. And all this stuff impacts other parts of life. And, you know, I've done it, and I'm sure other people have done it, too. You sit back, and it's almost like paying your taxes, right? You're like, what would I have done with that extra money? Like, what would I do with that extra time or, and now you're not having to worry about things like, I'm wondering what I'd be in that space, I'd probably just be watching television, but I like to imagine that I'd be doing something amazing.

Sarah 1:02:31
You spent I mean, your brain gets so good at dealing with diabetes at the same time as everything else in life that you just don't realize how much time? Yeah, you're devoting to it because it becomes second nature. But you know, all day long, I'm glancing down at the Dexcom app or nightscout. And, you know, even if I'm not having to do anything, to intervene, it's like, it's just always there.

Scott Benner 1:02:59
How involved are you with Jeff? Not? I mean, from your description of how he manages, I would think he's not looking for help. But I'm wondering,

Sarah 1:03:06
not at all I mean, I have him, like I have him on Dexcom follow. But he just, he just takes care of it. And I think it was kind of funny, when Maya got diagnosed, I thought like, Okay, I know a little bit about diabetes because of Jeff. But he doesn't talk about it a lot. And so I think I didn't realize, like, I knew nothing about the nuts and bolts. And so I thought I knew more than I did. And, you know, it's like, it only took a couple days to realize that, like, Oh, my gosh,

Scott Benner 1:03:46
well, you know, an episode went up today with a woman who said the exact same thing about her husband. Okay, yeah, just the exact same thing. And then her child was diagnosed, and then it made it more of a thing that was spoken about in the house. But

Sarah 1:04:00
yeah, yeah, I mean, he just he's always just dealt with it. You know, it's like if he has to take three or four injections to correct a high blood sugar, he just does it. You know, he doesn't doesn't whine about it.

Scott Benner 1:04:15
Does it ever impact his mood? And is it hard to remember for you when it does?

Sarah 1:04:22
I think the only times I really noticed it is if he's low. Like he'll he'll get a little chippy.

Scott Benner 1:04:32
Can he can he hear your loving, wifely direction when you're telling him that when he's lower? Can he not respond? Well, it's usually best

Sarah 1:04:43
just to not say anything. Okay. No, he doesn't go like you know, it's not like one of those

Scott Benner 1:04:51
slowly I tell our stories of people

Sarah 1:04:53
yeah, people that like totally turn into a different person and no, it's not anything like that, but

Scott Benner 1:04:59
you don't bring up some or vacation plans are no, no, no, definitely

Sarah 1:05:02
don't bring up anything that's touchy.

Scott Benner 1:05:05
Yeah, that's interesting. I mean, I just again, it's something that you have to consider that I don't think that most people would. would believe. It's almost like when you have kids, and you're like, you need to say something to them you think and you know what they're upset right now. Now's not the time, or they just got home from school, or I'll let them eat something first. You know, it's, it's just another one of those things, to me at least like you just don't, you know, and life doesn't always like do that. Like, sometimes you can walk into a room thinking, you know, we need to buy a new washer and dryer. And I need to say that out loud so that we can get this process going. And Yep, not everybody has to look up and think. I wonder what Jeff's blood sugar is, before I bring it up buying a thing that no one in the world wants to buy, get you exactly

Unknown Speaker 1:05:47
the stuff.

Scott Benner 1:05:49
It's, I just find it really interesting. And I think more so because of the iron thing, because now I have this appreciation for the fact that my personality changes, but my iron gets too low. And then right. I didn't know that. And and I'm grateful for the knowledge because otherwise. I mean, imagine if this was 200 years ago, I would just be the, you know, the guy who gets mad for no reason and sleeps more than he should? You know, and then that's my story forever. Right? Who I Am.

Sarah 1:06:17
Yeah, it's unfortunate that you had to do all the research yourself. No,

Scott Benner 1:06:21
internet wasn't that tough by research? I mean, I sat in this chair and googled things. So I found out what to do. But I also you think about people who wouldn't think to do that? Or would come up and get into the first answer that they get? And if they I guess maybe I have diabetes to thank for that a little bit, honestly, that I didn't. The first thing they said, you know,

Sarah 1:06:41
well, yeah, I mean, I just, I think about that every day, you know, people, people that I meet that have diabetes that are having a tough time, you know, because they go with what the endocrinologist says, it doesn't have to be that way.

Scott Benner 1:06:57
Yeah, no, you can keep looking and learn more things. And I mean, the podcast is a good example of that. Really? Yeah. I didn't ask you at all. But do you like this podcast? Like, why are you on it?

Sarah 1:07:10
Yes, yeah. No, I, we definitely listen. This was like, I think, probably what helped me the most in getting off the ground with helping my good because it's like, I just I knew nothing about, you know, the nuts and bolts of managing diabetes. And all we had was the information that we left the endocrinology office with, which is pretty much that standard, like, use this much insulin, treat a low with 15 grams of carbs, that kind of thing. Which I don't I in no way want to be little, the office that we go to? Because they are fantastic. And I know why. I know why they probably only give you that much that first day. But But yeah, it it's the problem is when

Scott Benner 1:08:03
the first day turns into the six months, and then you're much more than that. And yeah, you've only seen them for 30 minutes, and so far, and you're trying to figure things out, and things are happening every hour and every minute. It. It's not like, it's just a strange thing to say to somebody like, you know, I'll see you in 90 days. And like, well, I'm gonna have a problem every 30 seconds, so that 90 days is gonna wait a long time, you know?

Sarah 1:08:27
Yeah, no, we're, we're super fortunate we, we actually just had a video visit last week. And I was so nervous because we started looping a couple months ago. And our office is, you know, they're super, super supportive and always have been, and I think one of the nurses is actually looping herself. And so I didn't think it would be a big deal. But still, it's like, there's always that anxiety that, you know, they'll be nervous about it or not want to help you with it. But they were, they were super excited for us and even offered to help us if we need it, which I think is almost unheard of, from what I've heard often say,

Scott Benner 1:09:10
yeah, that's the office then for sure. Yeah.

Unknown Speaker 1:09:12
Good for you. Oh, they're awesome. I

Scott Benner 1:09:15
mean, honestly, for somebody with let me just count real quick here. celiac type one, hypothyroidism, celiac? type one celiac, probably celiac. 123456. For a person living with seven different elements in their home. You're doing great. Thank you. You really are Yeah, anything wrong with you, by the way, the doesn't bend right. Anyway,

Sarah 1:09:38
I have some of my own autoimmune issues, but it's not celiac. And it's not type one. So yeah, I have other stuff going on. So hopefully that doesn't also make its way into the kids. But that's TBD.

Scott Benner 1:09:52
Well, we still have plenty of weed for them if they are suffering hippie.

Unknown Speaker 1:09:56
That's true.

Scott Benner 1:09:59
I I don't want to ask you, isn't it funny? Like I had no trouble asking you about three other people's health concerns. And then when you said I have other things, I'm like, Oh, she doesn't seem like she wants to talk about those, I want to ask what they.

Sarah 1:10:11
So it's funny because I don't mind talking about it at all. It's kind of, it's funny to talk about because there's never really been like a name attached to it. So I have a lot of the things that come along with lupus, but I don't have enough of the different symptoms for a lupus diagnosis. Okay. So I kind of have like, lupus light.

Scott Benner 1:10:36
What is what are the symptoms that, that people?

Sarah 1:10:41
So I went through a lot of years with, like, constant fevers, and just like general signs of inflammation in my body. And fevers all the time, like, achy skin, like almost when you have the flu, and it hurts when you're close touch you. That kind of thing. Yeah, it was just kind of a bizarre set of symptoms, just like constant fatigue. Yeah,

Scott Benner 1:11:14
that sucks. Jesus, you guys all found each other. It's good. It's good that you found each other? Honestly, it is. Yeah, no, he's a nice support system here. Somebody who doesn't have any symptoms of anything might be like, I like Sarah a lot. But she says that her shirt hurts her arm. So I'm getting out of this. But

Sarah 1:11:31
like, the funny thing is, I think of us is a really healthy family. Because everyone manages what they have going on. None of the things going on stop us from doing anything. We're all active and healthy. Like, I don't think of us as having various ailments, even though we do.

Scott Benner 1:11:53
I have to tell you how much I agree with you. Because I think of Arden is an incredibly healthy person.

Unknown Speaker 1:11:59
Yeah,

Scott Benner 1:11:59
yeah. And she does have stuff, you know what I mean? Like there's Yeah, don't working through her her thyroid. Like settings, actually, she's got to go get blood drawn, today or tomorrow to look again. And that's one of the problems when you're getting these things adjusted. It's like you almost have to go give blood like it's constant so that the doctor can can really like narrow it down. And I would not describe hardness sick. And never, it never occurred to me, actually.

Sarah 1:12:28
Nope. No, I like when I think of our family. I think we're healthy. Yeah. No, even though I know on paper, the insurance company would disagree. But

Scott Benner 1:12:38
they'd be like, like a big red stamp. Looks like these people out of here somehow. You know, I agree with you. I am I have a very similar if not exactly the same feeling. I think that, that it's probably a bit of a fallacy that people go through life with no problems. I think some people's problems are just a little more persistent than others sometimes. And, you know, to think that you somehow got shaken out of a perfect life. It was this or something else, you know, like you weren't, yeah, it just wasn't gonna go that way. Especially, I don't want to like, you know, I'm not gonna get on a soapbox or anything, but we make a lot of processed foods. And there's a lot of factory farming in the United States. There's a lot of people here we're trying to feed, and there's a lot of fast food for people who can't afford more. And so there are good reasons for everything that exists. But it's just not natural. And I think it's been hard on us. Yeah, you know, for sure. And I think that you and your family and probably my family and a lot of other people are, are seeing what happens after, you know, a couple of generations of red dye number or whatever. Don't worry, yeah,

Unknown Speaker 1:13:47
it's just like, yeah, I've

Sarah 1:13:50
read that the incidence of type one is going up, but they don't really No, why?

Scott Benner 1:13:55
Yeah, well, I mean, the incidences of a lot of things is, seems to be rising. And, you know, sometimes you could look at it and say that there's more people on the planet. But, you know, I just I don't know how to argue with the idea that there are things that we eat, that aren't food, and that can't possibly be good for you. Right? So, yeah, Twinkies shouldn't last for 100 years. And if it does, you probably don't need it.

Sarah 1:14:20
Now, and thankfully, those are not gluten free. They don't make a gluten free version of that. So I don't have to buy those for my kids.

Scott Benner 1:14:27
I'll tell you there's a it's a video somewhere you can find online, but I think it's a McDonald's cheeseburger that someone leaves out. Oh, God never age. So you leave a real cheeseburger out and bugs want to eat it and it gets really disgusting and it starts degrading, but apparently not a McDonald's cheeseburger. It'll hang on forever.

Sarah 1:14:49
Yeah, that's just wrong. not okay.

Scott Benner 1:14:51
And by the way, McDonald's makes the best fast food french fries of the fast food restaurants in my opinion. I'm just saying. They also have

Unknown Speaker 1:14:59
yeah

Sarah 1:15:01
McDonald's. Yeah, they're not super celiac friendly. So actually, my kids have never eaten McDonald's before. Well, that's good. Like, well, yeah, I think that's very good for an American. It's kind of weird.

Scott Benner 1:15:14
There's Um, let's see. This is an article from Oh, it's so funny that if you google McDonald's fries, silicone. It said like there's a an article from 2015. You know, it's a while ago, that says something about let's see, 14 ingredients and McDonald's fries including petrol, bass, chemical and form of silicone found in silly putty. And then there's another one that's only a couple of years old. Scientists say chemicals used in cooking McDonald's fries could help cure baldness. So hey,

Unknown Speaker 1:15:53
listen, Jesus.

Scott Benner 1:15:56
I mean, you know, give a little get a little but but more interestingly, is that the third return is from McDonald's, and they've been pressed to put up a thing about silicon. Do you use silicone polymer in your frying oil as an anti foaming agent? Yes, minute quantities of Wow, dime file Polly ciloxan are present in our oil. Food great added above I have to tell you, one of the things I've done for my own health this year, is cut out processed. Any processor or heat pressed oils, I only use like cold pressed olive oil. I stopped using canola which I lived my whole life thinking was somehow better than oil. I don't use vegetable oil anymore. It's made a big difference. Like I cut those oils out and just went to an intermittent fasting schedule and like lost 16 pounds.

Unknown Speaker 1:16:52
Oh my gosh, that's all I changed.

Sarah 1:16:54
Yeah, that's like the thing right now. And I think I might die if I tried to do that. Because I'm like the eat every two hours type.

Scott Benner 1:17:02
It's 1246 here and I have not eaten yet today. My my, my, my, my time started 45 minutes ago. So the first thing I'm going to do when we say goodbye is eat something. But oh my gosh, um, but I'm smoking some turkey breasts right now, which are probably done, so

Unknown Speaker 1:17:16
I have to go. But that sounds good. Yeah,

Scott Benner 1:17:19
you were terrific. Thank you so much. You shared a lot of information that's valuable. And I can't thank you enough. Please. Thank everyone in your family for allowing you to talk about their health.

Sarah 1:17:30
Yeah, really? Yes. I had to. I felt like I needed to get clearance from my daughter. Like, yeah, how would you feel if I went on the podcast and she was super excited. Because she enjoys listening?

Scott Benner 1:17:42
Well, then she can come on whenever she wants to tell her. As long as she's interesting. You can hold up her into the conversation. I would love it.

Sarah 1:17:49
He has personality coming out of her ears. So you could let me know

Scott Benner 1:17:53
I'd be a good kid. I'd love to hear from a 12 year old about what it's like to have type one diabetes. I seriously would.

Sarah 1:18:00
So she she thoroughly enjoyed that episode with Dylan.

Scott Benner 1:18:05
Oh, he will be thrilled to pickle. Yes, he will be thrilled to know that. He really is. Well, okay. Hey, listen, let's say goodbye. And then you can send me another email and we'll set her up. All right, cool. Thanks so much for doing this. Yeah.

Sarah 1:18:20
Thank you for having me. I enjoyed talking to you.

Scott Benner 1:18:22
Hey, you were terrific. And your connections very clear. So bonus. Oh, good.

Sarah 1:18:26
Good. Because I'm yeah, I'm like, on my iPhone in the bedroom trying to stay away from all the noise and the rest of the house.

Scott Benner 1:18:33
It's really it's crystal clear. It sounds terrific. So thank you so much. Thanks so much to Sarah and her whole family for allowing her to come on and tell the autoimmune apocalypse story. Thanks also to Dexcom makers of the G six continuous glucose monitor to Omni pod makers of the Omni pod tubeless insulin pump, and of course touched by type one.org. Please visit the sponsors. Check out those links in your show notes. Subscribe in your podcast app. tell a friend about the show. Dun dun dun dun dun dun dun dun dun. Oh, are you looking for those diabetes pro tip episodes. You can check them out right here in your podcast player. They begin at Episode 210 where you can find them at diabetes pro tip.com. At that same link at the bottom are all the defining diabetes episodes. Right now the music's just gonna fade out and I'll be gone.