Scott Benner 2/19/21 Scott Benner 2/19/21

#443 Type 1 Clinical Trials

Type 1 diabetes clinical trials

Kim is here to share her daughter's story and a ton of information about type 1 diabetes clinical trials.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or their favorite podcast app.

To find any clinical trial: clinicaltrials.gov or jdrf.org/impact/research/clinical-trials/

Teplizumab for newly diagnosed: theprotectstudy.com/home/
The functional cure trial company: viacyte.com
To get screened for auto antibodies: For relatives of a T1D 2-45 (free) trialnet.org and for anyone ($55) jdrf.org/t1d-resources/t1detect/

+ Click for EPISODE TRANSCRIPT

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

COMING SOON

#441 Doing the Sarah Dance

A family with multiple type 1s and celiac

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

+ Click for EPISODE TRANSCRIPT

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.

#438 Poop in a Group

A type 1 diabetes journey

Galen is an adult type 1 who was diagnosed with diabetes as a teen.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello, everyone and welcome to Episode 438 of the Juicebox Podcast. On today's show, we're going to hear an adult father who has type one diabetes himself, look back on his younger self, his diagnosis, and how he got to where he is right now.

Hey everyone, today we're going to talk to Galen Galan is an adult who has type one diabetes is diagnosed as a teen. And things didn't go great in the beginning, but they're going better now. And this is a very retrospective look back on that time. Please remember, while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan for becoming bold with insulin.

You may have heard about those diabetes pro tip episodes that I have and defining diabetes episodes, if you're looking for them, and it's hard to find them in a podcast player, sometimes you can check out diabetes pro tip.com. That's my website where they're all sort of collected together. And you can get a good feeling for where they're at. Now, if you want to go back in your app after that, and listen, once you know what episode number you're looking for, it's cool. that'll definitely work. And those defining diabetes episodes, I love them. They're shorter episodes that give you a good firm grasp.

Of all the terminology that's used around diabetes, I hear very often from people who are newly diagnosed, that it all just sounds like a foreign language to them. So those defining diabetes episodes are me and Jenny Smith, talking through specific ideas, given some examples and get me out of there. So that doesn't take too long for you to grasp all the new words that exist in your life. Before we start, I just want to let you know that this episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter, you can find out more about ardens meter at Contour Next one.com forward slash juicebox. I'd also like it if you check out the T one D exchange at T one d exchange.org. forward slash juice box. Last but not least, this show is sponsored today by the glucagon that my daughter carries. g evoke hypo Penn. Find out more at G Vogue glucagon.com forward slash juice box.

Galen Hensler 2:41
I'm Galen Hensler. I am 32 years old. I've been type one diabetic for 15, almost 16 years now. So October 27, will be the day that I've had diabetes longer than I have not.

Scott Benner 2:56
I live in Boise, Idaho with my wife and two little kiddos. That's interesting, because your name makes it feel like you're from Sweden or something like

Galen Hensler 3:05
that. Yeah, yeah, I was born in Berkeley. So I think that kind of explains the beard name.

Unknown Speaker 3:14
Is there anything else you'd like to tell me about your hippie parents?

Galen Hensler 3:18
I think that covers it.

Scott Benner 3:21
Are they still with us?

Galen Hensler 3:23
Yeah, so my mom is actually a social work professor in Montana. So she teaches at the University of Montana. And then my dad is retired and living in Oregon.

Scott Benner 3:35
I just figured they were both protesting in the street somewhere right now.

Galen Hensler 3:38
Not you know. I think my mom would be. But uh, yeah, she's she's busy teaching.

Scott Benner 3:44
Oh, that's excellent. How did you end up in Iowa?

Galen Hensler 3:48
Or Idaho,

Scott Benner 3:49
Idaho. I'm sorry. Yeah, Boise, that was fine. I know, they're not both the same place. I just heard I and, you know, go ahead. I'm sorry. I don't

Galen Hensler 3:59
know. No. Um, so my wife and I actually moved out here about three years ago for the job. I guess my previous job here. So we were in Missoula, Montana. I'd been there for about 10 years doing undergrad and then graduate school. And then we both graduated I guess I graduated and looked for a job in Boise Idaho was kind of where we ended up

Scott Benner 4:24
and what function of getting us our baking potatoes are you involved in?

Galen Hensler 4:30
I you know, I am involved in the marketing of the potatoes. Are you seriously? No. No, I I do work in marketing but not not on potato

Scott Benner 4:41
chips. There's got me that's something now I listen. What else is going on? And I'd hope but

Galen Hensler 4:46
school me a little bit. Um, it's beautiful. I would say that. It's so I grew up in Salt Lake City before I moved to Montana. And it's close enough to Salt Lake City where I can go and visit Friends and family that are still there. Nice, but not so close that it's every weekend.

Scott Benner 5:07
The same thing coming at you without saying

Galen Hensler 5:11
100%. And it's like, in the middle of nowhere. So like, nobody's just gonna like pass through Boise.

Scott Benner 5:16
So I have a dream, Galen, seriously of living in the middle of nowhere. I don't know if maybe a lot of people have that feeling of like, I want to get away from everything. But I feel like if I didn't have children that I was trying to say central to as they became adults, you know, or maybe I'll get lucky, and they'll just turn out to be, you know, jackasses and I won't want to be near them very much. Yeah, that would be nice. Yeah, that would be beautiful. Because then I would totally try to mimic Harrison Ford's life. Um, you know, try to find some property that's a mile and a half from the mailbox that kind of Yep. Yeah, that's, that seems really quiet to me. I worry about wild animals. Do you want a gun? You have to shoot things ever that come at your house?

Galen Hensler 6:01
No, you know, so we're actually in the city in Boise. So it's not so horrible. I will say in Montana. My parents lived in stevensville, which is like 30 minutes outside of Montana in Missoula, on like a few acres of land, kind of in the middle of nowhere. So we did get like, wild animals rolling around. So I was never worried about it. But there was one day where I came outside, and there were a bear and a few cubs up in the tree. And that did give me a bit of a reason to leave.

Scott Benner 6:41
I would have put myself in a box and FedEx yourself out of there

Unknown Speaker 6:44
immediately. 100% would have to go. I

Scott Benner 6:46
didn't realize there was a bear here. Why didn't someone tell me and that would be the end of it. I'm sure it's not like that. I only have one experience with a bear. We were in a cabin situation out in California, at Yosemite. And we were walking across from I don't know, like a centralized eating area to back to the cabinet. And there was just a bear walking through. And I recognize that the people who work there did not seem to care and they weren't even aware of it. It was it was, you know, it was like a squirrel was walking through. I felt like you know, it's on. Yeah, and I'm like attacking my children and my wife and we stay here till the end. We'll make a run for to the car and go.

Galen Hensler 7:27
Yeah, seriously?

Scott Benner 7:28
No. Anyway. Okay, so you've, you've had type one for about half your life. Tell me about when you were diagnosed you.

Galen Hensler 7:37
So yeah, when I was diagnosed, I was just turned 16. For like, a few months before, I was just like drinking a ton going up, or like getting up in the middle of night to pee, just like all the classic symptoms. Right? My I have a stepbrother, who's 11 days younger than me. So we're super close. And he would always give me a hard time because I couldn't like see the TV. So like we'd be watching TV and I couldn't read like the score of the football game. So all of the classic symptoms. Yeah. I was playing football at the time. And I do I still credit that to basically saving my life. Or at least making sure I didn't. I was diagnosed in my blood sugar was 990. And I credit kind of football everyday with keeping that below 1000. Is it

Scott Benner 8:32
just do you think the activity was holding it back? As much as Yeah, because you were really you were running towards the I'm assuming they told you you were in DK. What was the what was the final thing that happened? couldn't lift your hands fell over what?

Galen Hensler 8:45
So I was actually on a road trip with my mom and we were driving. And I couldn't read the road signs as we passed them. So we came home and she started doing some research and I just I remember one day she picked me up from school. And I got in the car and we drove to this like urgent care I think it was Yeah, and they tested my blood sugar. I just like one of their meters there and it was air or Hi. Hi. Megan said hi. Did you

Scott Benner 9:13
actually mom I can't read the street signs.

Galen Hensler 9:17
Yeah, okay. Yep. Yeah, and she was like, like we road tripped a lot when I was growing up so like we were like really good with like we're getting in the car and we're driving to wherever going even if it's like 12 hours away and we're not stopping how many Femina went out rallies Have

Scott Benner 9:29
you been to? Just kidding I quite a few. Yeah, I was gonna say I don't have any problem with that. I just thinking maybe a little Galan has been been in a couple of seasons of people holding signs once or twice in his life.

Galen Hensler 9:43
You know, it was actually dog shows which isn't that far off. rallies, but yeah, like all over. But for the trips. This last trip I just remember we'd stop like every hour so I could be so we got home. I think my mom did some research. got into the car. And she later told me she was like, your breath smells like, like fruit, like you smelt so sweet. So I remember we went to the urgent care, blood sugar was off the charts there and they're like, you need to go to the ER. My mom was actually working at the Children's Hospital in Salt Lake. So we went there. And it was, like a few days before Halloween, and I just remember, the one thing I'll never forget is the nurse came in and was like, you know, eat whatever you want. This is last time you're gonna be able to eat without taking insulin. So, uh, yeah, I was in the hospital for a couple days and

Scott Benner 10:42
got trained and a lot of people get the the last meal. Yeah, from from medical staff. It's uh,

Unknown Speaker 10:49
it's weird. Yeah.

Scott Benner 10:51
Would you like? Would you like a horrible last meal to? Hi high anything at all you want from the hospital cafeteria? Exactly. Last free meal of your lifetime? Yep. Did you want the jello? It's not good. How did they screw the jello out? By the way? That's fascinating.

Galen Hensler 11:09
But it probably sits there for a couple weeks. Yeah, no, it's bad.

Scott Benner 11:14
What's the What's it like being 16 and suddenly having everything about your life change.

Galen Hensler 11:21
Um, it was hard. So I definitely went through a period of, I'm not diabetic. So for like six months, when I was like, regular seeing my endocrinologist, I was like, really good. And then probably around 17 and a half, like senior year of high school, I just kind of denied it. But for that, first, I would say there's a lot as crappy as diabetes is, I was lucky. Like I said, my mom worked at the hospital. She's a social worker. I said, as a social worker. I had a teacher, who I was taking a class from that was type one diabetic. Like, my endocrinologist was my best friend's uncle. So like, these weird connections, it just, it made my life easier.

Scott Benner 12:14
So a fair amount of support around you. But yeah, yeah, some point you just deny having diabetes. I wonder what that looks like? What does it look like to just say, this is not happening to me? Do you stop taking care of it?

Galen Hensler 12:25
Or Yeah, it's like stop testing, stop giving insulin. At the time, I was on multiple daily injections. And it was I would say I would like take lantis maybe. But not bossing for food. blood sugar's are running, you know, probably in the high, two hundreds, low, three hundreds. And this went on for probably at least a couple months. I'm just not, you know, it's I want to be a senior in high school. I don't want to be different. Just let

Scott Benner 13:01
it go. You just let it go to do the things who Yep, catches that. and turns it back for you? Is it yourself for people around you? How does that happen?

Galen Hensler 13:11
It was it was me and probably my mom. Like my mom, I said, was a social worker, she worked at the Children's Hospital. She's been involved in, you know, just supporting people going through tough times for her career. So

Scott Benner 13:29
it's not hidden. She's aware of your ambivalence at that point.

Galen Hensler 13:35
It took a while. I would say that,

Scott Benner 13:37
okay.

Galen Hensler 13:38
Like she was not. I was 16. So I was obviously giving myself shots, and checking blood sugar myself, like all of that. But I think eventually, it's like when your blood sugar is running it to 50 for two weeks. Like you're not functioning at 100%. And I I get really pissy when my blood sugar's high. Yeah. So I think she caught on, you know, after a while, and then when it didn't get better, she,

Scott Benner 14:05
she stepped in. It's very interesting. I mean, I know you have children who are younger, but I was just speaking about this with a friend of mine the other day, actually, Adam Needleman, who's been on the show before. And I said, it's this, you know, I was talking about my son is like, He's a good kid. And so I don't want to be up as asked all the time. Ya know, and at the same time, you're trying to stay involved, you know, so that you kind of know what's going on, but you don't feel like you're being pushy. And he doesn't feel like he needs it. But at the same time, I'm sure there's a ton about him that I don't know. And yeah, you know, like, so you're just trying to stay your interest. I mean, for me, I'm interested, right, like, and I want to be involved. I don't want him to feel like I'm pushing him or that he doesn't have a little room to figure things out on his own. And that's great in a normal scenario, but not if your blood sugar's 250 all the time, like you know, yeah, then you need somebody to go Hey, go And I was wondering, could you stop being an idiot and, you know, start listing out, but but you're not being an idiot, really, you're trying to give yourself space to do the other things that didn't feel I guess it didn't feel possible to do diabetes and live at the same time is Yeah, it's just

Galen Hensler 15:18
yeah, you know, like I said, I had a stepbrother, the same age, and we, you know, would go out and it's like, I want to be able to go like, eat dinner with friends and not have to worry about running and checking my blood sugar, or running to the bathroom and shooting up. So like, it's easier just sit there and have dinner and hang out. And yeah, ignore it.

Scott Benner 15:40
So it was the it was for you? Was it the actual process of having to test having to inject or did you not want anybody to see? Did you know, that part?

Galen Hensler 15:50
So I didn't really care about that part. Like, from as long as I remember, I've never had a problem with like, whipping out my needles and shooting myself in the arm. It's more of just taking a step back. I remember when I was diagnosis that it was a 62nd. Disease a day. So like, every day, you're dealing with it for like 60 seconds. And I remember, it became clear pretty quick that it's like, there's no way this is 60 seconds. It's like, you know, I was trying to think this morning. It's like, I'm thinking about diabetes. Like, every moment of the day, it's just checking in on how I feel checking my blood sugar, you know, am I gonna eat in a couple minutes? Am I drinking coffee, like, what is what's happening in my body. And that, I think I just got burnt out really quick of, I don't want to have to think about what my blood sugar is doing. I don't want to have to think about giving insulin. I don't want to have to count carbs. I don't have to worry about if I exercise and my blood sugar is gone, though. Like I just want to I just want to get back to normal life.

Scott Benner 16:57
Was there any feeling that you, you know, you got lied to when they said it was a 62nd disease? Was there? Like when that was told you were like, Oh, that's not bad. Like, I'll just do this thing and then I'll be okay. And then you realize that's not the case? Do you feel like there was a bait and switch? Or?

Galen Hensler 17:12
I don't, I don't really feel like there is a bait and switch. I just feel like it's, you know, I think it's something that just doctors would tell people to make it less intimidating early on.

Scott Benner 17:26
I always think they don't want you to drive off a bridge on the way home. So they're like, exactly, I'll be bad. They'll probably hear it soon. Even they'll be fine.

Galen Hensler 17:33
Yeah, within five years, you'll be cured. Don't

Scott Benner 17:35
worry about it just didn't look it Look, inject it into the banana. See how easy that was? That's what you'll remember. I had an orange to get an orange. I remember injecting

Galen Hensler 17:43
into an orange. And but yeah, it's like they they they make it seem like it's not a huge, huge deal. Checking your blood sugar takes five seconds. You know giving insulin takes 30 seconds to drop the insulin and shoot yourself in the arm. Yeah, but it's there's there's so much more to it than that, that people even without diabetes don't get you know, so doctors that are trying to explain this to people just don't really understand unless you've been through it.

Scott Benner 18:12
So did you for the lack of a better term. Did you pull it together before college? Or did this persist into college?

Galen Hensler 18:18
No, I was lucky I kind of got a group in a group before I went off to college. And I kind of bounced around between graduating high school, doing a semester in college in Logan, Utah, and then went back to Salt Lake worked full time for a bit and then my parents went to Montana. I followed them up there and started school there.

Scott Benner 18:46
You know what I'm doing right now while you're talking? Right? I'm writing down poop in a group as a possible race at the end of this story. You come out victorious. This one's going to be called Getting your poop in a group and Okay, it's your fault. Just so you know.

Unknown Speaker 19:04
I'll own it.

Scott Benner 19:05
I never heard anyone say that before. And I was my brain went poop in a group.

Unknown Speaker 19:09
Oh my God. He

Scott Benner 19:10
means together. This is fantastic. That I grabbed my pen. So thank you so much. You guys are all your worst enemies. Just so you know when you're going so true. Yeah. But but that's fantastic. Is that a colloquialism that's local to you.

Galen Hensler 19:30
No, it's me. Try not to swear so my daughter doesn't hear me and repeat it.

Scott Benner 19:34
She's gonna curse Don't worry about it. You can't Oh 100% Yeah. I Arden just asked me about Coronavirus. The other day she goes when the f are we getting out of this house? I was like is it gotten to that point yet? She's like, I really need to get out of here and I was like, Alright, well, I said, sweetie, I'm not sure what's about to happen. But we'll know. I think it's mid July or not quite mid July right now. And There's as much of me that thinks that this is about to get worse, you know? So yeah, yep. Like, oh geez, why don't we wait a little while longer? Find another corner of the house to stare at? You're gonna love it. How old are your kids?

Galen Hensler 20:14
I have a three year old and a one year old. Wow. Oh,

Scott Benner 20:17
yeah, that's kind of better, at least. I mean, maybe not for you and your wife as much as them. But, you know, at least they're not like, Oh, we never get out of here.

Galen Hensler 20:25
Yeah, and we were lucky. We live right behind the school. And obviously the school is out so we can go over there and walk around and play in the field and nice. Get out of the house. But yeah, it's definitely it's been. It's been a long lockdown.

Scott Benner 20:38
Yeah, no kidding. And you can't walk through a potato field because it's all lumpy. So yeah, you gotta go find somewhere else. Really? Yeah.

Galen Hensler 20:44
Yeah. It's Idaho. So it's leaving the state really to find a field. That's not

Scott Benner 20:49
I don't imagine that it's not just border to border. Just Vados? I don't know this. Bruce Willis live there. Where is he? I Oh, damn it. Am I am I I'll figure that out while you answer your next question. Are you so you're in college, you've got your stuff together. It's going pretty well, but I'm looking at your note here a little bit. Do you develop an eating disorder in college? Or how does what happened? Yeah,

Galen Hensler 21:16
so that was, that was I would say, right, when I moved to Montana, I kind of got burned out. Again, this was probably less severe.

But similar, like cutting down on insulin, and I just started basically running a lot.

Scott Benner 21:38
Okay, um,

Galen Hensler 21:40
so I would, I was down to like, 140. So I lost probably like 40 or 50 pounds. Well, I've just giving less insulin. And this was like, I wouldn't say in high school, and I got burned out. It was like basically no insulin. When I moved to Montana, it was more of I'm just going to run a lot and give insulin and try and keep my blood sugar. If I'm hitting 250 that's fine. I just wanted to stay below 250. So yeah, got it just wasn't it wasn't a healthy time.

Scott Benner 22:30
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How often do you think to yourself, hmm, my agency doesn't match what I'm getting with my blood glucose meter. The meter is telling me one thing, but then I get my agency done three months later, things aren't jiving. Or maybe you have a continuous glucose monitor. And it says one thing and the meter says another thing and that just leaves you confused. I remember this happening with my daughter. And it was not fun, just these two different numbers. And they left you feeling unsettled. But since Arden has moved to the Contour Next One blood glucose meter, I don't live through that any longer. And ardens a one sees very closely match our expectations. My point is, is that technology gets better. And you should keep up, especially when it comes to your blood glucose meter because you make so many important decisions based on that number. Head over to Contour Next one.com forward slash juice box. And you can learn all about the Contour Next One blood glucose meter. For instance, it uses test strips that offer Second Chance testing, meaning you can touch the blood not get enough, go back and get some more and still get an accurate test. Without wasting the strip. It's possible that you could be eligible for a free meter, it's possible that you could buy the meter in cash and it'd be cheaper than you buying it or another meter through your insurance. There's so much to find out and all the information you need is at Contour Next one.com forward slash juicebox. There's links in the show notes for contour for G Vogue. And for the T one D exchange because I'm going to ask you to head over there as well. P one d exchange.org. forward slash juicebox. If you're a caregiver, or a type one who lives in the United States, you can add very simple data to what the T one D exchange is doing. They ask you these super simple questions about life or diabetes there Not long answers, I think it must have taken me about seven minutes to do the entire thing. I did it right from my phone, you could do it from your computer. It's easy. And this information helps the T one D exchange to move things for for people living with type one. I give you all the examples all the time, but they're there, read about them at T one d exchange.org. forward slash juicebox. You could very easily make life for other type ones and yourself much better and support the podcast. Alright, let's get back to the show.

So you were purposefully manipulating the insulin to lose weight? Yeah. Did you feel like you had a weight issue?

Galen Hensler 25:56
Yes. Um,

Unknown Speaker 25:59
yeah,

Scott Benner 26:00
we like 190. What do you five? Five?

Galen Hensler 26:01
I am six foot.

Scott Benner 26:03
How are you at? 190? That seems like a good way for me. No.

Galen Hensler 26:08
Um, it probably was right. But it was more of Yeah, it just, it was a weird period, I would say moving to Montana, not really knowing anybody not really knowing what to do with myself. This was early in my college days. So just just to get in

Scott Benner 26:29
your own head, do you think? Yeah,

Galen Hensler 26:31
yeah, definitely.

Scott Benner 26:32
That's interesting. That's really interesting. Because, you know, obviously, any kind of eating disorder is not I don't think, you know, you couldn't call it sensible. Like, you're like, Oh, I'm, I'm at the perfect weight, but I'm just gonna lose weight, you know, like, so. I mean, obviously, that's that aside, it's just interesting to hear that you were at what I would consider. I mean, a reasonable weight for your height, and especially your age. Yeah. Were you just trying to make yourself inhospitable to bear attack? Perhaps you're like, maybe if I get small enough these things? I think it's not worth the effort.

Galen Hensler 27:03
Yeah. Not worth it. If I just practice running, I can get faster than them. Just outrun the bears.

Scott Benner 27:08
Are you aware of it while it's happening? Are you like I'm manipulating my insulin? I this is not healthy.

Galen Hensler 27:13
Hold on. I think I lost you.

Scott Benner 27:16
Hello. Hello. You say goodbye. Can I say hello? Hello? Hello?

Galen Hensler 27:26
Scott. Can you hear me?

Scott Benner 27:27
I can. Can you hear me?

Unknown Speaker 27:30
Oh, no.

Unknown Speaker 27:32
This is weird.

Scott Benner 27:35
I am going to

Unknown Speaker 27:44
can you hear me?

Unknown Speaker 27:48
What?

Galen Hensler 27:52
Alright, can you hear me now?

Scott Benner 27:54
I can hear you the whole time. Can you hear me?

Galen Hensler 27:56
I can hear you now know what you do. I think vice speaker my airpots died. Oh.

Scott Benner 28:05
Yeah. And when you can't count on $240 small pieces of plastic. What do you really? I can't believe you didn't charge your air pods for this.

Galen Hensler 28:15
I you know, I did her. Eating before

Scott Benner 28:19
hurts my feelings. Just so you know.

Unknown Speaker 28:21
Oh, sorry.

Scott Benner 28:24
No, get yourself situated. And we'll go back.

Galen Hensler 28:26
Okay, I'm gonna have some other speakers. This whole work from home thing is?

Scott Benner 28:38
Yeah, my dining room looks like what I imagined Kelly's office looks like and it's not pleasant.

Galen Hensler 28:44
You know, we, uh, my wife is in graduate school right now. So we turned our walk in closet, in our apartment, into our office. And it is just hot mess.

Scott Benner 28:58
Honey, get in the closet. This is where it's gonna happen.

Unknown Speaker 29:00
Just everyday just come out of closet.

Scott Benner 29:04
It'll be an awakening for you every day. At the end of the work. You'll be like, I'm free again. By the way, Bruce Willis just recently sold his $5.5 million. Idaho ranch. It is beautiful.

Unknown Speaker 29:15
She is

Scott Benner 29:16
new. He lived in Idaho. Because I think I think dummy lives there still and that's not again, I'm not being mean. I believe that's how she wants her name pronounced. Any of you who lived through the 80s and 90s will hear that joke and no one else will understand that there was a time where Demi Moore ran around telling people Her name was to me. So I'm I'm the only one that apparently is gonna remember that but for you all people out there Enjoy your giggle. GALEN gets his headset together while and I figure out if Demi Moore lives in Idaho? Cuz I'm telling you she does who she does Are you rich Galen cuz I have houses seem very expensive.

Galen Hensler 29:55
I wish

Scott Benner 30:00
My gosh. As a matter of fact, but yeah, I can, by the way, as a matter of fact it during the beginning of COVID Bruce went to live with me and her family and I think she's

Unknown Speaker 30:15
Wait, what is this?

Scott Benner 30:17
Oh, and he got split from his current family to stay with Demi's the scary accent behind Demi Moore and Bruce Willis is COVID-19. quarantine. I'm not gonna read that. But apparently Bruce Willis got stuck quarantine with his ex wife instead of his actual life. Photos of the mirror and matching pajamas and oh, that's comfortable. Honey, I'll be honest to this crowd is over. I'm just hanging out with me. Seriously, I wish this is the first time I found myself wishing I could take a phone call to like to see if somebody goes. I remember when she wanted to be called dummy. It was hilarious. My gosh, anyway, you're good. I'm good. All right. So it's a nice interlude. I'm leaving all that in, by the way. Okay, while you could hear me, I was singing it was terrific. So when you're consciously doing that, and so you have you have the sort of, you know, intellectual, emotional, you know, ability to say, I'm doing something that's not healthy for me to get this result. Yep. I mean, that's a weird headspace to be in, is there any way you can explain how that feels?

Galen Hensler 31:32
Um, I think it's thinking long term versus thinking short term. So you know, having your blood sugar, run it to 50 isn't going to kill you tomorrow. And I knew that, and it was me thinking, Okay, I, you know, I want to lose some weight, I want to, you know, just kind of deal with a little bit of burnout right now and not think about it as much. So let me let my blood sugar run high a little bit. Yeah, knowing that it's going to take you know, I won't see the effects of this. Or the major effects. Obviously, there are some short term effects, but I'm not gonna see the effects of it for a while. So it's okay to let it happen for a bit.

Scott Benner 32:19
Did you see it? Looking back? Did you see it as a psychological issue? Like was your appearance was so important to your that the idea that this needed to happen, or you were Joe,

Galen Hensler 32:29
I don't, I don't think it was ever like, worrying about my appearance as much. Because really, I was like, I just moved to Montana, I was living basically in the middle of nowhere. Like, didn't really see anybody except my family. And then, like friends in Salt Lake who like play video games and chat. It was just more of again, just, you know, the burnout of not wanting to deal with it as much and having other I'm good,

Scott Benner 33:02
no, I was gonna say, I guess the real fear ends up being that you could get stuck in that forever. And and that burnout, because then what the high blood sugar's due to your kind of your ability to think about, yes, you could just get stuck there. Like, yeah, like any bad sci fi movie where somebody takes you to a place where you, you just have to realize you're there to get away from it. Yeah. And instead, you just give over to, you know, the good, you know, the quote, unquote, good parts of what you're saying. And you're like, um, I keep my weight down, it's fine. You know, and you can keep saying these are long, long term, like, I can stop it whenever I want. Yeah, I guess the real problem is that a lot of people can't stop it, because they're being pushed more through the psychological impact of being concerned about how they feel, or they have some actual, you know, issue. Totally where, where they feel like they don't look the way they want to, quote unquote, but you know, even if that's not true, and if they're the only one seeing it, we I guess makes it true for them. It's interesting, I didn't know we didn't really feel like we'd be talking about this. So yeah, still wrapping my head around it a little bit. But it's, I'm thinking now, this is gonna sound terrible, but I knew a kid in high school who was really heavy. And he tried and couldn't do anything about it. And you know, he eventually it was keeping in mind, it was the end of the 80s he decided that cocaine was the way to lose weight. And it worked. He was real skinny by the time Yeah, he was done, but his life for the next 15 years was a disaster. Yeah. And thinking of that group of people now. And there's no way any of them are going to listen to this podcast. I feel like I'm good here. They're all a different mass in some way or another and one of them's dead. Yeah, and and had a terrible heart attack when you know in early 40s, mid 40s And if I could describe that his life was exactly how you might imagine somebody who's you know, recreationally and consistently using cocaine through their 20s and 30s. And pulls himself together in his late 30s. Go to school, becomes an attorney is practicing, meets a woman has a baby, and drops that cheese. And so I wonder if when he was 20 if somebody would have said to him, Hey, listen, man, when you're 43, you're gonna die with a newborn? Like, you know, you're gonna go through all this. And I wonder how that would have impacted his first decision. And I? And I don't, you know, obviously, yours didn't go on very. How long did you do this for?

Galen Hensler 35:44
Probably. I would say I got insulin and eating under control within six months,

Scott Benner 35:53
okay. So you're not gonna have I mean, likely have any long term complications from it? But But what if you would have got stuck in it? Yeah. And many people do, right? Yeah. Okay. So you, you get that you put that poop back in or to a group? And Yep, your poop gets scattered a lot.

Galen Hensler 36:12
It does. Yeah.

Scott Benner 36:14
You just got to run around and like, just push it all back together again, and head off again. That's, let's find out where else you get scattered. Let's keep moving forward. When do you meet that lovely girl who you jammed into her closet.

Galen Hensler 36:29
So she was actually a student of my mom's at the university. So she was a social work major. My mom's teaching social work at the time. And we ran into each other a lot, just like around basically, my mom's office slash the social work department. And we were, you know, chat and friendly. And that went on for like, two years. And then a couple weeks before we both graduated, actually sent her a friend request on Facebook, and said, we should hang out. And literally the next day, we got coffee. And I think we hung out every day for like the next

Unknown Speaker 37:15
couple months.

Galen Hensler 37:18
And then propose, like six months later, and got married couple months after that, and been together for five years now married for over five years. Wow.

Scott Benner 37:29
When do you propose when you realize you can't believe she's still with you? Yeah, yeah. Yeah. Like, well, this girl's not figuring it out.

Galen Hensler 37:37
Gotta lock it down.

Unknown Speaker 37:38
Why does she not look at me and go, what am I doing here? She's gonna figure it out. Eventually. I gotta do something.

Galen Hensler 37:44
I thought she would. But

Scott Benner 37:47
well, he she's the kind of girl who will accept a closet as an office so amenable to all kinds of things. Yes.

Galen Hensler 37:53
Yeah. No, she's great.

Scott Benner 37:54
It's funny. That's great. Good for you. I don't want to jump around too much. But have you gotten an answer? I'm looking at your notes though. Your daughter had your which daughter, the three year old?

Galen Hensler 38:06
So? Yeah, my three year old? Um, yeah. So this is kind of the ongoing story of our life. And January 2019. So last January. I was at work one day and got a call from my wife during a meeting. I thought it was weird, but I just ignored it. And then I texted her and she was like, No, something's wrong, like call me. From what I can tell. My daughter Berkeley had a hypoglycemic seizure. And my wife was there, she called 911. And then called me I started driving home. Paramedics came, paramedics did not check her blood sugar, which I find weird, took her vitals and said she was fine and left. I got home, probably about 20 minutes later. Berkeley like ran to me when I came in the door. And she just looked off. And had I not been type one obviously, I wouldn't have thought anything. Like we would have just taken her to the ER but she looked, she looked like she was low. So I checked your blood sugar. It was 41 huh? And we started giving her honey. Check your blood sugar again, probably about 10 minutes later and it was 37. So we call 911. Again, paramedics came long story short, we ended up in the ER she saw my daughter had basically was not able to like move the left side of her body and we think probably part of the seizure. Did all the scans were in the ER for a couple hours, did a bunch of scans or a bunch of tests, everything came back normal sent us to the Children's Hospital here. We were there for two nights, I think two or three nights. And basically just ran a bunch of tests. Everything came back normal.

Unknown Speaker 40:23
As it happened to me and since then.

Galen Hensler 40:26
So when we left the hospital, they basically said, like, we don't know what's going on. So my wife and I, again, kind of luck of the draw that I'm type one diabetic. I know about, you know, counting carbs and like different food groups and like, what? Like, I'm more aware of food, I would say than the normal person. Yeah. So we were checking Berkeley's blood sugar. I mean, we we kept a little log, and it was ridiculous. I think we checked her 30 times a day, at least.

I was waking up every two hours in the night to check her blood sugar. Just because we didn't we didn't know what was going on.

Scott Benner 41:12
Were you in a panic, she was just gonna die.

Galen Hensler 41:14
Yeah, 100% pressure comes from 100%. And, you know, again, it's like when my wife calls me and says Burke was having a seizure. This obviously never happened before. So it came out of the blue hit like a ton of bricks. And we did everything we could to like, make sure that didn't happen again. Pretty quickly, we realized that it seemed like dairy, made her blood sugar go down. So we would if she had yogurt or milk, her blood sugar would start to dip. And we'd have to correct. So we basically have been avoiding dairy milk. Is that working? It is?

Scott Benner 42:01
Have you gotten any kind of answer about why that?

Galen Hensler 42:04
No. Nope. And we've had, so she's had genetic tests done. Every like literally every test has come back normal. So she's been charged for, like pre markers for diabetes. Just everything seems to be normal that we've tested for.

Scott Benner 42:25
Wow. Yes. Incredibly odd. I hope you find an answer to that and share it with me, by the way.

Galen Hensler 42:30
Yeah, excuse me know me. Yeah,

Scott Benner 42:32
that's fascinating. And I know a bit about, like, seeing stuff like that. And just being perplexed by it. I, I've mentioned on the show, I think before, but my body doesn't appear to hold on to ferritin. So like, you give me a CBC, and my blood tests are all my values are perfect. I look fine, like you know, except my ferritin is 13.

Unknown Speaker 42:53
Interesting.

Scott Benner 42:54
And hold on a second. I'm sorry. And then I go get an infusion and it goes back up again. And these symptoms that I have, which are really weird, like, I think it's called paraesthesia. But I get like a little electrical feeling on the right side of my skull lesion. And if that's not painful, or anything like that, it just get like it feels like somebody like touches a nine volt battery to my tongue, but on the side of my head for a split second. When I feel that I start thinking, Okay, my father must be starting to go down, then my muscle tone goes away. Like I've changed nothing else about my life. But however, please don't get me wrong. I'm not lifting weights or anything like that. But, but my normal muscle tone begins to lessen it gets a little jelly ish. And then I start having weird reactions to things. And so what I would say to that is that you know, it, you might just say, I'm overreacting, like if you think of someone who's overreacting, but there's a fogginess that comes around it. And I just sort of something happens. And as I'm responding to it, it's usually like a more tense thing, right? Or, I don't know, you'll say something to me. And where I would not normally be flippant or dismissive. Like I just sort of em, and that if it goes into a conversation, the words coming out of my mouth don't match how I feel or what I'm thinking. It's, it's and I'm not it's not disassociated or anything like that. You understand what I mean, but it's Yeah, it's I have a hard time. Not saying, I guess the worst of all the options of what to say, Sure, I get the ferritin it all just goes away.

Galen Hensler 44:39
Interesting.

Scott Benner 44:40
And so my son's home from school, gets his, um, you know, his well visit. And, you know, the girls have hypothyroidism and, you know, with diabetes and everything, so I just say to the doctor, can I get a baseline on coal when you do his blood tests? He's like, Yeah, sure. Absolutely. So You know, everything's fine. It's thyroid level. I mean, you should see the kids like, seriously, it looks like an underwear model. You can run forever. You know what I mean? Like there's there's nothing about his life that would make you think something's wrong with him. Yeah, physically. And Adam called and we talked about it. Hold on one second, I cannot get my throat clear. It's probably Corona just stuck right there in the back. Sorry. Um, you know, if I end up with Corona, people are gonna be like, you shouldn't have joked about that. Seriously. My joking, it's not gonna stop me from getting sick or getting sick. But, but so I hear back colds blood tests are amazing. He's like, they're better than amazing. He's like, his CBC is absolutely. It's it's like everybody wants the CBC, his cholesterol, his thyroid levels are fine. Everything is good is a one C was five, you know, blah, blah, blah, blah, blah, is ferritin 20. It's incredibly low. And I'm like, Oh, my God, we there's some genetic thing, but he doesn't have any symptoms of it. So I don't know. Like, it's just a strange thing. when something like that happens to you that that then doctors go. Well, I mean, I wouldn't worry about it. If it's not causing a problem. Yeah, that's a weird answer to get,

Galen Hensler 46:13
you know, yeah. No, it really is. So

Scott Benner 46:15
is that the answer? You got? Like, don't give her milken go live your life. But how do you do that? Yeah,

Galen Hensler 46:22
I mean, that the answer that. So I mean, like, we've traveled like, we've gone down to Salt Lake. We've seen a couple doctors up here. Everybody gives the same answer. Like, everything looks good. Maybe she'll grow out of it. Right. And so it's been 18 months now. And still, you know, she got the day had a not low but you know, in the 60s and acting some dramatic? Like still happening that outgrowing it. It doesn't really give us as parents any peace of mind to be a comfort with that. Yeah, yeah, like, outgrow it when? You know, and that's not an answer. No, it's Yeah, it's like, what are we supposed to do when we send her to kindergarten? Like, just? Like, how do we deal with this throughout her life? Where it's always been? Or it's always gonna be like, Maybe, maybe not? Maybe today, she'll outgrow it? Maybe not.

Scott Benner 47:23
I wonder if her doctor couldn't prescribe a Dexcom Pro study for.

Galen Hensler 47:28
And that's. So we actually have a appointment with her endo, next week. And that's kind of what I'm trying to push for is just give us a Dexcom for her. Yeah, so we can see. Because again, it's like she's three years old. She takes a nap during the day. Sometimes she'll wake up and like below when she wakes up. And it's nice to know.

Scott Benner 47:52
Well, you might be able to find a pattern more of a pattern. Yeah, maybe finding the pattern would point to something. I wish you luck. I'm sorry. We got sidetracked on that. But that's really

Galen Hensler 48:00
No, no, you're fine. It's super. Yeah, it's definitely the case of our family of everybody's trying to figure out what's going on with poor Burke.

Scott Benner 48:09
Well, by the way, this poop in a group thing might get sent away because you're a bit of a hypocrite because you've mocked your mother in the beginning. Being from Berkeley and calling you Galen, and then you named your baby Berkeley. So yeah,

Unknown Speaker 48:21
it's true.

Scott Benner 48:22
GALEN is a hypocrite. But he's now second on my list.

Galen Hensler 48:28
That's fine. We actually Her name is actually Berkeley rose. And there's a Berkeley rose garden. So

Scott Benner 48:34
yeah, that's very nice. I'm just kidding. It's so wonderful. It's a lovely name. It really is.

Galen Hensler 48:38
It is but it's definitely for Berkeley, the city that you know, was born in and grew up in. So

Scott Benner 48:42
how is the one year old? Saskatchewan she okay. Things are good that

Galen Hensler 48:46
a one year old is actually Lincoln?

Unknown Speaker 48:49
and Nebraska.

Galen Hensler 48:51
Yeah, it not Nebraska. It just, honestly, I don't know. We just like the name Lincoln. So we ended up going with Lincoln.

Scott Benner 48:59
I'm not I'm not. I'm not breaking your balls overnight. It's fine. It's easy, like, Link? Is that a is that? Yeah. Yeah. It's not like that. Yeah. Plus, you're not matching anything with your last name. So it doesn't matter. Hey, listen, this is the point in the podcast where I tell you I don't care and it means nothing to me. But because of the podcast history. I'm remise. You've mentioned Utah a number of times any chance you're Mormon?

Galen Hensler 49:23
No, I was raised LDS. But I am not. I would say I am far removed from the church. Ah,

Scott Benner 49:30
gotcha. But you were there at one point.

Galen Hensler 49:33
I was there at one point up until I was 18.

Scott Benner 49:35
I'm counting you on the tally. Just so you know. At some point, one day, I'm getting an answer. I really am. Because this podcast is listened to everywhere. Really everywhere. And I mean, I gotta be up to 10 by now, right? Like I'm getting close. Like I there's Yeah, I don't know something's going on.

Unknown Speaker 49:56
That's weird.

Scott Benner 49:57
I need to study of diabetes and Utah. That's what I seriously. Yeah. Oh my gosh. So, you know, with all this, it's sort of happened to you and and, you know, currently with your daughter and previously with yourself. You mentioned that, you know, when we were talking, you know, through email, you mentioned that you really feel like attitude has a lot to do with diabetes. And I was wondering how that manifested for you and how you put it into practice?

Galen Hensler 50:25
Yeah, so you know, when I was going through, when I first moved to Montana was kind of going through the struggle there. Once I started getting into school, I got a job, I was kind of forced to start taking care of myself again, to basically feel normal. So when your blood sugar's around 250, you're just not feeling great. And just kind of realizing that I feel so much better when my blood sugar is controlled. And being able to, to know that there's a benefit and taking care of yourself. And I think I mentioned this in the email, but I graduated with my undergrad and then moved into law school. I got engaged, my first semester of law school, got married, my second semester of law school. And then we had Berkeley, my last year of law school. So law school was kind of a whirlwind. And I think that's where I kind of really buckled down on, on knowing that you have to put limits on everything. And what I mean by that is, law school takes a lot of time and a lot of effort. But I was also newly engaged, newly married, had a new kid. So I got in a very good habit of really looking at law school, like a job. And you know, from nine to five hours, I was working at law school, and then I would come home and hang out with my wife. And, you know, do that basically every day.

Scott Benner 52:08
And you can't do those things when your blood sugar's high, and you can't focus and all the other problems that it comes exactly,

Galen Hensler 52:15
yep, you really have to, you have to change the my mom's favorite saying is like, change the channel. So you have to, like change the channel of your mind. Like, like diabetes sucks. Like, there's no if ands or buts about that. But there's no like denying it doesn't do anything to help you. Right? I think that's kind of what I really came to. It's like, I cannot take insulin, and I can feel horrible. Or I can just it, I can just suck it up and be like, this is the hand I was dealt. It sucks. And again, I've said this a few times now, but like, I'm lucky, like, I have never had gaps in my insurance. I've always been able to get insulin like I've never felt like I was rationing insulin. Like you said, I had a great support system. My wife has been amazingly supportive. Like as, as horrible as diabetes is a lucky one. And just kind of realizing that it's, it's the hand you're dealt, and you just got to do what you like the best you can.

Scott Benner 53:23
So there's nothing to point to then you can't say that you had an epiphany or you employed a certain thing. I think that's important for people to know, like, you recognize that. And then you just consciously said, I have to change this. Yeah, right. It's not there's no, there's not a book to read, or, you know, a seminar to go to or something like that. You just you, you have to be an adult and look and say, you know, the alternative is not good. If there is going to be long term consequences. If I keep going like this and short term, I'm cheating myself out of the things I'm trying to do. totally right. So but

Galen Hensler 53:58
i think i think there's a there's a power that comes from recognizing it yourself. Versus, you know, like reading a book and changing your behavior because of a book. I think that's fleeting. I think it's, you know, you can watch an inspirational talk and you know, want to change your life, but until you like, internalize it until it's like coming from you. Yeah, it doesn't stick. And, obviously, you know, I've gone through ups and downs where I've taken better care of myself, and not so great care of myself. But at the end of the day, it's like these little periods of, of burnout. They don't last long. Because I know, you know, like, especially now having kids, it's like, I have to take care of my better care of myself. And then just knowing like, you feel so much better when you're in control. And the time it takes to be in control is worth worth taking that time. So I'm not sitting there worrying about, you know what my blood sugar is doing.

Scott Benner 54:57
Well, I think that you by about it like this. I think that's as helpful as anything because you're a person that did it. Like, it's easy to, like, it's easy to say, you know, oh, I read a book, this guy has all these ideas or there's quotes or inspiration that's bold. That's not somebody that did it. That's somebody who's saying it like you did it. And just because you can't exactly quantify how you did, it doesn't mean that that's, that's not inspirational. I mean, just the idea that it can be done, I think is is really more important than anything else. And I have to tell you that while I don't have type one, obviously, the idea of burnout seems reductive to me. Like it seems like an oversimplification of something. And I don't know what it is, but I keep hoping that through these conversations, we're gonna find out. Yeah, you know what I mean? Because, I mean, I don't have, again, I don't have to take insulin, right. I don't have that pressure, that stress in my life, but my life has not been particularly terrific. Along the way, you know, at every step. And there's something about that persistence, that I know I have that persistence, like, I don't give up. Yeah. And and I don't know why that is. And I mean, like, emotionally physically, if things don't look good, I am internally hopeful person. Yeah. And, and I don't know why. But if that's not your case, if you're more pessimistic, and it's funny, I'm incredibly pessimistic about most things, but not the big things. Sure. It's, it's strange, like on on a low level, like, you know, I see something happened, oh, my God, this is gonna go to hell. You know, like, like, I don't see anyone. I don't see any way this is gonna work out. But, but I think overall, it can work out. Yeah. And so the moment might be bad, but I don't think that the journey is a failure. Sure. And I don't know how to tell you that either. Like, I don't know why I felt like that most of my life, other than to say that, you know, knowing you're adopted early on, is it's a little rough to hear, like somebody had you and when whatever. Like, that's, that's hard. But then you meet a family who cares about you? You're like, oh, okay, well, that's good. And then that family gets divorced. And you're like, Oh, well, that's bad. You know, like, and it's just, you know, and then, and then I didn't really have like, stick to itiveness in school. So I had no prospects, like, yeah, coming out of high school. But, and I took a job that was terrible. I worked in a sheetmetal shop for like, six years. And every day I was there, I was being paid nothing. I was killing myself physically. And it did not seem to be a pathway to anything except showing back up the next day and doing it again. And, and it was horrible. Because I felt like, I felt like a, like, I wanted to write a book, I felt like I had all these ideas of things I wanted to do, I'd sit around with guys, they were all lovely. I want to say seriously, that a lot of my life lessons came from those men that I worked with, they all had something about them. Because you don't have a father. There's no way to know how to be a sense. So what I would do is I would look at the people around me. And I would pick out what I thought were their just their best traits. And I'd pay attention to them. There was one gentleman who was just incredibly honest. And there was a guy there who worked really hard. And there was a guy there who had an incredible sense of humor, like I did, and he wasn't afraid for people to see it. And you know, and like, they all had these different kind of bits about them. So being there was an incredible part of my life like to see all of that. And I would just sort of like, I used to joke that like being adopted, it's great, because you it's not even a joke like because you get to decide who you are. No one really tells you who you are, you know? Yeah. So you get the look and you go, you know, this guy over here. He's an earnest, son of a bitch. I like how earnest he is. Yep. Maybe that's a good thing. Instead of watching your parents and just soaking up whatever it is they put out into the world, you know? Yeah. But, but and so maybe that built into it. And that's a long way of saying that not everybody gets to have that experience. So when some other person has, you know, oh, my parents got divorced. They don't go, I bet you we can get through this. Some of them just go well, that's the end. Yeah, you know, and then that it blankets them for a long time. So I don't know the difference between someone like you, and someone who still has that is living with an eating disorder that yeah, that never breaks free of it. Or who doesn't realize I can't do this with my blood sugar because I'm trying to have a family and I love these people and I want to be an attorney. By the way, how the hell did you go from being an attorney to marketing?

Galen Hensler 59:45
I got like halfway through law school and realized I didn't want to be a lawyer. But at that point, you can't drop out of law school you're halfway through so I just stuck it out. And actually got an MBA while I was finishing law school.

Scott Benner 59:58
Yeah, moved into marketing. There you go. See? Yeah, so you just never you never took the bar. Is that how that works?

Galen Hensler 1:00:02
never took the bar. But graduated law school just

Scott Benner 1:00:05
Yeah, you're just like whatever.

Galen Hensler 1:00:06
Yeah, pretty much. It's a good fallback option, like in five years if I'm like, Oh, yeah, I want to be a lawyer now. Yeah. I am one step closer, I guess. But you're not.

Scott Benner 1:00:15
Yeah, yeah. No, no, I understand. I just told that. I just told a story on the podcast recently, I had a counselor in school who's like, I think you'd be a great attorney. And I was like, oh, then I'd be an attorney. Yeah,

Galen Hensler 1:00:24
yeah, exactly. I was like, I like my wife. And I like my kids. I want to hang out with them. So

Scott Benner 1:00:29
yeah, I just couldn't imagine doing it every day. Like, I love the talking, and the rationalizing, and the arguing, but the writing wouldn't be for me, like I that would throw me off,

Unknown Speaker 1:00:39
I think.

Galen Hensler 1:00:40
Yeah. And, you know, I want to actually touch on something that you were just saying, getting back to being able to like, pick and choose, you're saying, Yeah, people around you. And I think one thing that, like, helped me through loss was i'm just i'm very logical, and very black and white. I don't swing high or swing low, usually. And so knowing that about myself, and being able to look at having type one, and dealing with this for 15 years, there's just been so many points in my life, where I'm able to see like, it sucks to have type one, like I've said, Everybody knows that. Yeah. But I think when you get past that hump of like, this sucks. And you can start looking when possible at points in your life, where it's like, okay, it sucks to have type one. But when I was diagnosed, I was in the Children's Hospital. And there were kids, you know, one, two years old, they were having to get their fingers poked. And I know this now having to do it to my daughter, but it's like, they don't understand what's going on. They're just getting poked by their parents. But it's like I was old enough to at least know what was going on. So even though it sucked. It wasn't as bad as it could have been. The context was available, at least Yeah, and going throughout my life and seeing that. It's, it's giving me an outlook of, oh, man, like, I'm so lucky that I was raised in a house where I was able to have the support system where I had insurance, you know, where I had the financial ability, like, pay for these things. Even now, it's like, I'm lucky enough to have a have a great job, to be able to get supplies and everything to keep me healthy. It changes your outlook. So it's like as shitty as diabetes is, when you're able to take a step back and kind of change your channel and adjust your view.

Unknown Speaker 1:02:46
It it.

Galen Hensler 1:02:48
For me, at least, it's made me a lot more compassionate. It's given me a lot of just ability to see like, people aren't as lucky as I am. And what can we be doing to basically help those people that, you know, can't afford insulin or are unable to get their insulin or, you know, can't afford their supplies?

Scott Benner 1:03:09
Did other people's situations that were worse off than yours give you the feeling like you can't waste the opportunity that you have to do better with the tools you have? Did you so not thought

Galen Hensler 1:03:20
not just with diabetes? I would say almost not necessarily with diabetes. It's just kind of, you know, hippie, parents. Social Work, mother. Yeah. It's that it's been instilled in me for a long time. GALEN, there are starving kids somewhere your beans. like pretty much. I mean, it's basically like you're given this opportunity. You were like, I wrote my law school. Like application essay. I'm basically like, I'm an upper middle class white male, like I'm starting, like a step away from the finish line. And it would be a disservice to me and everybody else if I didn't try and do as much as I can, right?

Scott Benner 1:04:01
So half assed your way through them exactly. Like I did it. Yeah.

Galen Hensler 1:04:04
Yeah. And diabetes, I would say, gives all of that an extra layer of like, you know, people starting off like, there's there's still things that people deal with. So like, how can we just like what can I be doing to help people?

Scott Benner 1:04:24
Not here? Well, that's a good message, man. It really is. Wow, that was a lot. I didn't expect all that. Good for you. Nice. Well done. Thanks for having a great microphone. So actually, your microphones so great, that are at times when you're quiet. I feel like I can hear a one year old and a three year old trying to kill each other is that Yeah,

Galen Hensler 1:04:41
you probably could. Yeah.

Scott Benner 1:04:46
I feel like the one year old was yelling, your blood sugar's low. Get away from me. Don't pass out on me. I see all this. Yeah.

Galen Hensler 1:04:54
Oh, my gosh. That's why I'm in the closet.

Scott Benner 1:04:57
Are you in the closet office right now?

Unknown Speaker 1:04:59
Yep. Yeah,

Scott Benner 1:05:02
well, things have fallen apart. I haven't. Seriously, I don't know when we're going back to work. I'm starting to think like, it's not gonna happen this year. Just you know, I'm

Galen Hensler 1:05:11
feeling the same way. Yeah.

Scott Benner 1:05:13
I don't know if I I don't know if this will come out months from now. I'll think I'll listen and think, Wow, it was right. Or I was I hope I was wrong. But yeah, I just saw some things. recently that made me feel like there's no way this is gonna go away. Right now. It's just people have gone back out. And there's just I don't know, like if if being distant and covering your faces is truly important than what I saw is troubling. So yeah. So we'll see what happens. I don't know. It's just it seems, it seems to me like I'm not as hopeful as I was. Maybe four weeks ago, four weeks, guys, like this is turning. I can see it turning. Yeah, I'm like, Oh, well, maybe not. I guess we all had to get back to five below. Very important. cozy. Yeah, we needed a squishy ball. And now everybody's gonna think again. Anyway, just you know. Anyway, fingers crossed. And hopefully I'll go back and listen to this and be like, I was really wrong. And our lives are all normal couple

Galen Hensler 1:06:11
weeks now.

Scott Benner 1:06:14
We'll see. Again, not. Thank you very much for doing this. Isn't it funny? I just did exactly what I said it was going to do in the short term. I'm not hopeful in the long term. I'm very hopeful. I'm like, this is a disaster, but it'll be okay. Eventually, eventually.

Unknown Speaker 1:06:29
Fingers crossed.

Scott Benner 1:06:30
Would you hang out for a second? I just want to say goodbye to you like a real person. Of course. Thanks. Thanks for doing this.

Unknown Speaker 1:06:36
Yeah, thanks for having me.

Scott Benner 1:06:45
A huge thank you to one of today's sponsors, g Vogue glucagon. Find out more about chivo kebo pen at GE Vogue glucagon.com forward slash juicebox. you spell that GVOKEGL Uc ag o n.com. forward slash juice box. Hey, really consider going to T one d exchange.org. forward slash juice box and adding your voice. And of course Thanks so much to the Contour Next One blood glucose meter for being a longtime sponsor. Check them out at Contour Next one.com forward slash juice box.