Scott Benner 11/17/21 Scott Benner 11/17/21

#579 The Harvey Gamage

Lindsay has type 1 diabetes and she sailed on the Harvey Gamage as a teen.

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

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends and welcome to episode 579 of the Juicebox Podcast

Alright, so Lindsay's been on the podcast before she came on and did a how we eat episode. And at the very end of it, she said something and I just thought, Oh God, I gotta have her back on. And I did, and I loved it. And I hope you do too. While you're listening, 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. Have you been looking for the diabetes pro tip episodes? Well, they begin in Episode 210 right there in your podcast player. And you can also find a list of them at Juicebox Podcast calm you click on the top it says diabetes pro tip and that actually takes you to diabetes pro tip.com Which I guess you could just type in if you wanted to. But it's all Juicebox Podcast calm if you want it just some redundancy there. Actually at that link you can also find the defining diabetes episodes great reviews of the podcast and so much more. Be honest with me are you dying to know what the episode title means? You're gonna find out oh my god Lindsey story is a Nana's.

This show is sponsored today by the glucagon that my daughter carries. G voc hypo pen. Find out more at G Vogue glucagon.com forward slash juicebox just like to take one moment to thank everybody who's bought me a cup of coffee at buy me a coffee.com forward slash Juicebox Podcast and tell you about the new members. Grace, Ashley, Amanda, Jess, Kate, Diane, someone who calls themselves someone that's not a real name. Su Yoli Sarah, Amy, Steven. Connie. Anna. Laura Marinda. Melanie, another someone. Corey, Jessica. Nancy, Sue, Shannon, Marilyn, Allison, Larissa, Melissa, Leah, blue, Julie, Daniel, Jennifer. And Jeanette. Thank you all so much for supporting what I do at buy me a coffee.com forward slash Juicebox Podcast.

Lindsay 2:28
Alright, I am Lindsay. I am from New Jersey, born and raised still living here. At this time, I'm 34 years old and I've been type one diabetic since I was six. I also have celiac disease. I've been celiac since I was a teenager. And I'm currently wearing Omni pod and Dexcom.

Scott Benner 2:57
And you and I have already recorded together. Yes. Okay. Is that live? It is right?

Lindsay 3:03
No, yeah, yes. That came out. Oh, gosh, I don't even remember maybe in January, okay.

Scott Benner 3:10
And at the very end of recording, I remembered thinking it's a shame that this was about like she eats and celiac and everything because there were so much like kind of richness to your story that we just didn't touch upon. And I think I might have like half jokingly said you should come back on it. We'll talk about that. And you were like, Okay, so here I am. And here you are. Let's first make sure I can tell people where to hear you talk about your you said celiac since and you paused for a second. And I was like if she picks a date that rhymes with celiac. That's it. But then, instead, you're like teens, and my brain was rushing. I was like, What? What? Year rhymes with celiac? There isn't one right? I just wanted to I wanted there to be one so badly when you started saying that. Just now I was like, Oh, this is gonna be amazing. And then

Lindsay 4:03
I guess I could say, I've been gluten free since

Scott Benner 4:07

That would be amazing. Was it 2003? Um, no. And I'm just trying to do the math in my mind. I can't I can't figure that out right now. Like there was I don't know how to explain to everyone that it was only a 10th of a second. But in my mind, it was a year. And I was like I could I could feel myself like closing my eyes and I was praying and I was like, Oh my God, she's gonna say something, it rhymes. And then I'm gonna have an episode title and everything instead. Nothing like that. You were not helpful at all.

Unknown Speaker 4:42
I'm sorry, I couldn't give you the title.

Scott Benner 4:45
You're sorry. I'm sorry that you're sorry. And I can't figure out what episode it is like, Oh, I know why it's because I'm like, because I'm an idiot. That might be why looking in the completely wrong place instead of just doing what I know I can do very quickly. Oh,

Lindsay 5:04
the episode number you know it. I could Well, hold on let me look. Let's see if I can find it.

Scott Benner 5:11
I'm gonna find it before you know. You're probably good about it because I guess

Lindsay 5:16
all right, I got it. It's 439

Scott Benner 5:20
Wait, how did you get before me? I'm in a system that lists all Oh, I didn't hit enter. That's how

Lindsay 5:29
damn it. Oh, that's that. Yeah, that'll do it.

Scott Benner 5:33
Damn Hey, you were 439 Got it? Anyway, there's a number of how we eat episodes. There's vegan carnivore plant based gluten free low carb. Bernstein should be out by the time you hear this, and a number of others. So people come on and they talk about, you know, different reasons why they have to eat different ways. And and Lindsay was nice enough to do that about gluten free. So but today that's not we're going to talk about what we're going to talk about today. Is your like a pirate or something?

Lindsay 6:06
Not Not quite.

Scott Benner 6:07
Can you just go with it for a second? What are you doing?

Lindsay 6:09
Yeah, sure. Yeah, I've done a lot of pirate type things. I guess you could say?

Scott Benner 6:15
Of course. Yeah. All right. So let's just give a little brief overview. First, you were diagnosed with type one when? When I was six years old, so 9092 92? How old are you now? 3434. When you were on the gluten free episode, I tried to your boyfriend about not asking you to marry him. But

Lindsay 6:35
yes, that's how that's happened. It just happened about two weeks ago. Congratulations. Thank you for super excited,

Scott Benner 6:44
oh, this is the best time. I'm so happy. Enjoy this part. This is like when you decide to buy a car and order it. And it takes a while for it to come. And so you get to live in this space where you haven't had to pay for it. And it hasn't broken down yet. So you're just like, Oh my God, that's the best. I'm gonna get this car. And it's so cool. I'm gonna love it. And then yeah, yeah. Live in this.

Lindsay 7:04
That's a good comparison. I mean, everybody's so happy. Everybody is just texting and calling. And it's just it's so great.

Scott Benner 7:14
A world of possibilities. Yes, really? Yes. It won't be for 20 some years before one of your children cheat treat you horribly after you've devoted your entire life to them? Well, we'll figure it out. Oh, are you well, don't worry. You absolutely well, what what made him? I mean, can I take any credit for this? I guess is where I'm going. Like, did you get off the podcast and say like, Hey, a stranger over microphone told me you really should ask me.

Lindsay 7:44
He knew that you are giving him some. You're making some jokes during the podcast. And that's unfortunately that I can't give you any credit for it. But you know, it's been something that we've been we've been talking about for quite some time. So it really just was about timing. And we had a bunch of stuff to get done. financially. We're just working on our home and doing a lot. So we actually were away. We went down to Florida. And he proposed on the beach. Yeah,

Scott Benner 8:19
way better than you pretending that it was my my doing. The real story. The real story is much better. Although this episode has the possibility of being you could have set gluten free since 93. Yes, I am a pirate. And by the way, you are the reason we're getting married. I guess we would have more excitement if that was any of that was true. But

Lindsay 8:41
yeah, that would be just awesome. I, I approve of that.

Scott Benner 8:46
So you what kind of management do you use right now pumping or injecting? Yep.

Lindsay 8:50
So I've been on AMI pod. Since almost since they came out. I actually don't remember what year it was. But I think I had my trial pod in somewhere about 2006 2007. So it was still pretty new. And yeah, I've been on it since. Love it. I have really no complaints. Prior to that I was all obviously all MDI. And I also were Dexcom. A little bit newer to the Dexcom community I started last January 2020. It really took me a while to kind of come to terms with the fact that I was going to have two things attached to me. And I hear a lot of people say that. It's just especially I think for women. It's a thought and it just for for whatever reason it took me a while to be like alright, I'm gonna do this and I did and I'm never looking back.

Scott Benner 9:55
That's excellent. Now I am amazed that you have Omni pod back when it was bigger. Oh yeah, other people who have been through that Arden was but I always thought on the pop is incredibly small. And then one day they actually made it smaller. And I was like, Oh, look at that.

Lindsay 10:10
Yes. Oh, that was an amazing transition. I couldn't even believe because it was. It's significantly smaller from the original one, right? In terms of, you know, insulin pumps, so, yeah, that was that was awesome.

Scott Benner 10:26
So, the, I'm gonna ask about the Dexcom for a second, though. So adding a second device. So the first device was okay, because it took away shots. Is that right? Yeah. Okay, so you're like, alright, I'll make this trade in my head. I don't have to do injections anymore. But then the second one, you can't really know the benefit of it till you live with it. I guess. Like people can explain to you like, you know, I try. You know, every other episode, you hear me go like, the Dexcom, G six, blah, blah. And I say all these things about they're absolutely amazing, but they still just sound like they sound salesy. You know what I mean? Like, do you want to do this anymore? You want until you don't have to do it anymore? You're like, Oh, fantastic, you know,

Lindsay 11:04
yeah, takes away. So many of those obligations. I'm testing, obviously, I still test occasionally, from time to time to double check and do whatever I need to do. But it also adds so much. It just, it gives you such a clear picture as to how things affect your blood sugar, which to me was absolutely priceless. I would wear another like I would wear five of them, if that's what I had to do to get that information. Because, you know, if you're active and you're running and working out and you love to eat and you eat food, it's amazing to see how things affect you. Yeah. And it's really priceless. It is

Scott Benner 11:46
you had you'd had diabetes just long enough through enough different moments in your life. To really appreciate it. Once you saw it. It seemed absolutely. That's why I can't say enough that I just interviewed a gentleman yesterday from the United Kingdom. And he was talking about CGM, and he had had diabetes for longer than you longer than a lot of people. His perspective was really, really amazing. So I feel like you're right in that space, too. Awesome. Yeah. So. So you're like, you're a real adult, like, you live with the guy that you're going to get married to now and you're not like, not like me, like running around like 20 something or like, I'm gonna get married, like you're, you like have jobs and oh, yes, right, right. But we do. But how do you end up? How do I end up feeling at the end of the last episode that I really missed out by not asking you about sailing and things like that? Like, how did that start for you? And is that still part of your life now?

Lindsay 12:44
So there's so many things that I've done, just like adventurous things throughout my life. And a lot of them I would say at the moment, right, right here and now. They're probably not a huge part of my life anymore. Except for one, which would be running and long distance running. But yes, I've been sailing since I've been a little kid. I spent a ton of time on the water, sailing and fishing. I spent four and a half months on a Semester at Sea during high school. That's a whole other that's a conversation we

Scott Benner 13:23
can have with you want to die right now. I don't understand any of that. Like you're in New Jersey. So you're near the ocean that I understand. But you're in high school Semester at Sea. We're not in a real high school. Was it like

Lindsay 13:37
no, I was so I'm from can I say where I'm from

Scott Benner 13:42
your life. You can say whatever you want. Yeah, I'm from Point

Lindsay 13:44
Pleasant. So it is a beach town. And I went to high school play pleasant borough High School. So totally normal high school public school. When I was a freshman, I had I saw an ad for this program called Ocean classroom. And it was through a College up in New England out of Maine. And I said Gosh, this is something that I would just love to do. I I always felt in high school. There was just something more out there. I was always just looking for something else. And looking for the next adventure next challenge however you want to put it. So I clipped the article and brought it to my parents and I said I'm interested in this let's Can we look into it. So after a couple weeks of researching and talking to ocean classroom, we really decided that yeah, I'm going to do this and it was something that my my parents had to pay for. There was tuition but I got high school credit for it so it's totally accredited program. And I spent January to the end of May on A 131 foot wooden schooner called the Harvey Gammage. We sailed over 5000 miles up. Actually, we started in the Caribbean. We spent about two months in the Caribbean, and then sailed up east coast to as far north as Maine. And then we ended in Boston and we made stops all along the way. Okay, I

Scott Benner 15:20
have a lot of questions. Yeah. Your parents really wanted to get ready. That's the first thing. You're a problem.

Lindsay 15:27
No, I was not. I was that an only child? That extra money are there. They're great. I mean, they were super supportive. And I'm sure people are like, Oh my gosh, so spoiled. It's not like that. I don't

Scott Benner 15:41
feel like that. I feel like it's more than supportive animal. I'm just mesmerized by how old you are. I'm trying to think of Arden 1617 As a junior than she was 1516 as a sophomore that made her 14 Like, were you 14 or 15 years old at that point?

Lindsay 15:56
Yeah, I was. It was 2003. So I was I should have been about 15. I think.

Scott Benner 16:04
And were you with other students? Or do you now have like a 65 year old husband? Like what is happening? Exactly?

Lindsay 16:11
Yes, I was with other students. So we had to, there were 23 students on the ship. I was one of 23. And they were all from all over the United States. We had students, a majority of them were from the East Coast, of course, from New England. So there were there was like a big grouping of people from Massachusetts, Maine, Connecticut, New Hampshire. And then we had a couple people, I think we had a person from Florida, Alaska, Montana. So all total strangers, we all had to go through an application process. So we applied and waited for an acceptance and we we got it and we basically got booklets of information. This is what we need you to do. This is what you have to do this what you have to pack. There was a lot of communication for preparation beforehand. And then we flew down to St. Thomas got on the boat and basically took off

Scott Benner 17:15
and it's a working boat or it wasn't like a pleasure cruise, right?

Lindsay 17:19
Oh, no, it was not a pleasure cruise. It was totally Yeah, it was a working schooner we we had three shifts. So we would have you know a watch B watch and see watch.

Scott Benner 17:37
G voc hypo pan has no visible needle, and it's the first premixed autoinjector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is GE voc hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G voc glucagon.com Ford slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G Vogue glucagon.com/risk.

Lindsay 18:25
And then, of course we had we had a crew who also doubled as our instructors. So we had a fully staffed crew. I honestly I should have looked into this, but I think there were probably about 10 or 11 of them. And then it was us. So yeah, we we worked every aspect of the ship sails, rigging, deck duties, cleaning, cooking, navigation, celestial navigation, steering every single part of this boat we were a part of. And there were no showers. So we spent, you know, you can imagine two months in the Caribbean. It's you're on the ocean. It's so salty and humid and just absolutely. I mean, just super uncomfortable. We would literally just jump over the side of the boat, get some salt water sudsing shampoo and take a shower that way. Occasionally, I'm talking maybe like once a week.

Scott Benner 19:34
Is there any is there any chance that a boat tricked your parents into paying them to use you as free labor?

Lindsay 19:44
I think there's a possibility.

Scott Benner 19:46
Because this pre internet like when you said you researched it like you meant you made phone calls and read brochures and stuff, right?

Lindsay 19:53
Yeah, this was like ancient times, right?

Scott Benner 19:55
You didn't go on Reddit and say like, Hey, does anybody know if this is just the elaborate way to steal my kid like nothing like Yeah,

Lindsay 20:02
yeah, it was it was totally. I read about it in a magazine. And everything. Yeah, everything was done via mail and we had email, obviously. But, um, yeah, nothing really online, you can't go to any forums or anything like that. So,

Scott Benner 20:18
wow, that seems like such a leap of faith to me. But I guess at that moment, it wasn't really.

Lindsay 20:24
It was, um, it was something that is life changing. Yeah, I would imagine. It's when you're going through it. And I had, I had so many difficult times, as much as I loved traveling and, and doing exciting things and seeing new things and getting out of my comfort zone. I was homesick a lot. I mean, it was not comfortable. So it's like, oh, gosh, I wish I could just go and take a shower and get in my bed. And but every single one of those moments that those struggles, just built upon itself. And by the time I left it, I just was like, I could do anything. That's how I felt. And from that point forward, that's literally how I feel every day, and how I live my life.

Scott Benner 21:15
Did any of the kids like? Like, what would happen if you gave up? Could you just know,

Lindsay 21:20
I think there's certain circumstances that you know, they don't want you to do that. Obviously, they don't want you to give up and, and go home and forget about it. Because part of the experience is pushing through those times. That's how you become, you know, a better person, I guess, but I'm sure Yeah, I'm sure if it was something you were really struggling or just not well, or, obviously if it's affecting your health or something like that. Yeah, of course. I mean, you could you could leave any time. Um, but I we didn't have we had nobody.

Scott Benner 22:00
One of the tight like, tie a tire to your ass and throw you in the water. Like, I mean, how do you leave? You leave a boat? They like?

Lindsay 22:06
Yeah, you don't. I mean, and a lot of those countries, we were in almost every island in the Caribbean. And so many of them are really like third world world countries. Some won't have internet, some barely have actually one of them had just gotten electricity. Maybe a year before we we were there. So yeah, there's really not an easy way. And of course, not a cheap way to get back. So that's another hurdle to

Scott Benner 22:35
tell me what year this was again. This is 2003. Wow, see, when you're telling the story, it feels like it feels like you're gonna say, Oh, this was 1982. You don't I mean, like, but this was not that long ago.

Lindsay 22:48
It wasn't that long ago. Um, well, I mean, when I think about it now I'm like, Wow, I can't believe 2003 was 20. It feels like yeah, it doesn't feel like it's been that long. But no, in reality, it's not. It's not that long.

Scott Benner 23:00
Wait till you start having the experience where you see a little advertisement. And it's like, your favorite movie from when you were 19. Like it's the 25th anniversary of Pulp Fiction like Well, no, it isn't.

Unknown Speaker 23:13
This is not true. Stop.

Scott Benner 23:18
You don't want it? Yeah, trust me. It's not fun. No, but Okay, so. So you have diabetes. Mm hmm. Alright, so let's then 2003 What's your management like, then?

Lindsay 23:32
I was MDI. And when I got on the ship, when I started, I was using humor blog and NPH. And insulin, I guess that was the long longer acting insulin. So I was mixing insulins and testing and taking shots that way. And I distinctly remember, at some point, about halfway through the trip, we were somewhere along the east coast of the United States in port. And we had gotten some kind of correspondence saying, we want, we want Lindsay to switch to link to Lantis. And everybody was like, Who the hell's? Why that we're in the middle of a Semester at Sea, who wants to change the medication? And, you know, it's just like, at that time, I was like, well, what's the worst that can happen? You know, let's, let's give it a shot. You know, maybe, maybe I won't jump off the side of the boat the first day that I'm going on Lantis and, you know, put myself in a super vulnerable position, but we did it halfway through and that was, that was great. I mean, that opens up a little bit more flexibility and just management.

Scott Benner 24:44
I have to imagine that people listening right now who are like, like, oh, I want to switch insulins but I you know, is Fiat's that much different than you people are in your houses making this decision here at home on land. He was 15 on a boat, basically being worked to death praying that she wasn't about to be sold into, you know, child slavery. And, and you oh my god, and they're just like, let's go from old timey insulin dough a fast acting insulin, which works completely differently than the insulin you were on prior.

Lindsay 25:23
Yeah, yeah, totally different. I didn't have much information on it. I remember somebody telling me it was like, more like having an insulin pump. Right. So it offered a lot, a lot longer coverage for that, that Basal? But, I mean, I had no idea. And and, yeah, I mean, if people are listening, and they're like, Oh, should I do this? Should I not do this? Well, I mean, maybe maybe you should try it, because you can do it. You can tie it

Scott Benner 25:54
up and get on a boat, and then do it when you're 15. Like, yes, this see badass person who's with me today? Because I That's fast. And there is no one listening. I would not change Arden's insulin while she was away from me. Yeah, like, I just wouldn't, but there was, wow. And your parents didn't just like send you a tax, they had to like contact a place where they knew you were going to be once you were on lay.

Lindsay 26:22
Yeah, so we had a pretty, I guess, pretty antiquated system of communication. The boat had a satellite phone, and the boat could make calls for really anything. But we tried to avoid doing that if at all possible. So most of the communication was done through mail. And people could send us letters or information or postcards or anything. And the boat would have designated mail pickup spots at certain locations that was available. So we got a lot of I got a lot of postcards and things from friends and family. And I am I also sent back I had a, like an old school camcorder with me. And I sent back videos of just certain things that I was doing on the on the ship, which actually my high school played for the entire school. Most mornings before class started. So that's that was kind of cool.

Scott Benner 27:21
We call those Proof of Life videos, by the way. Yes. Still alive. Did you have to hold up a newspaper? I mean, where would you get a newspaper? But hey, was this whole thing? Was it a big hookup?

Lindsay 27:37
How

Scott Benner 27:38
well you know, like working in a restaurant?

Lindsay 27:41
No, it wasn't it was? No,

Scott Benner 27:45
I'm pretty young at 15. I'm just wondering if you didn't turn into like, like, teenage Caligula or something like that. You guys were working this boat?

Lindsay 27:54
No, it totally did not. And yeah, I mean, I was I was one of the youngest. We had a lot of students who were juniors and seniors. So there were their kids were a little bit older. But the entire thing was super professional. And super. I don't wanna say regimented. But it has to be when you're working a shift and you're working together, you have to have pretty strict rules and guidelines and things to follow, or else people just gonna lose it.

Scott Benner 28:30
Well, no, I mean, obviously, things have to happen. I know, next to nothing about being on the ocean, but I'm assuming things have to happen. Or boats go in wrong directions or bad things happen with water being where they're not supposed to be. And stuff like that,

Lindsay 28:44
right? Oh, yeah. Yeah, for sure. Yeah, a lot of a lot of safety things, a lot of a lot of protocol and a lot of learning. I mean, we learned so much we spend a lot of our time in in class and class would consist of us sitting up on the deck together, learning about math, science, English, history, but all kind of location based. So if we were in a certain Island, we would be learning some sort of history about that location. If we were doing math, we would be doing celestial navigation, with a Sexton and, you know, all sorts of different other tools. So yeah, that was a big part of it, too, because we were getting credit for it. So we have to learn.

Scott Benner 29:34
That's really I find this absolutely mesmerizing, and I'm googling, like schooner and things like that, so I can see what you're like. Did you ever have to shoot a cannonball? Anybody?

Lindsay 29:45
Actually, we did. We had a small cannon. Um, we didn't shoot cannonball. But we did have a small cannon that we would shoot off if, like one of our sister ships was nearby. There were a couple different ceremonies that that would be appropriate for and I don't remember what they were. But, um, yeah, we did all all sorts of stuff.

Scott Benner 30:09
I interject for a second for everybody who heard me ask the question and then thought in your head. That's such a stupid question, Scott. Don't be silly. I got an answer out of that. So this is why you ask stupid questions, because at some point, someone's gonna like, oh, yeah, we had a cannon. Because I didn't think you had a cat. And when I asked you that, just the boat looks like a pirate ship. So, you know, yeah. i Okay. See, this is for five months. Is that right?

Lindsay 30:36
Almost. Yeah, it was about four and a half months. Yep. You get

Scott Benner 30:41
back. Does everything about being a kid seem trivial now? Yes. Okay. So, I mean, I would imagine, right, like you had seen and done things that just aren't gonna happen again, I would think Tuesday in social studies, you'd be like, Oh, this Yeah. Okay. Just set an expectation up for life to be vigorous and challenging.

Lindsay 31:08
Absolutely. It. It always. It pushed everything out. So I was like, wow, I could literally do, I could do anything. And if you've ever seen the movie, Castaway, he's, he's on the island. He makes it he gets home. And he's like, playing with like the light switch or something in the bedroom. He's like, he doesn't know what to do with himself. Right? He's been totally immersed in this environment. That took so much just adaptation and so much mental fortitude. And then all of a sudden, it's like, oh, we have electricity. Like, yeah, we have running water, we have a shower. I have clean sheets. And it sounds kind of silly. But it's even after four and a half months, it was a little bit of a readjustment. Getting back home,

Scott Benner 32:01
I would imagine I missed the first thing. I wondered, when when you told me how long it was, I felt like a week or two is a is you know, like a fun vacation. But once two months, turns into three months turns into four months. Now, this is what you're doing. And I imagine things have came up during that time, that we're not exactly, you know, I'm sure they were powerless to some degree and needed to be dealt with. And then I mean, and then cleaning your room and doing the laundry probably seems pretty.

Lindsay 32:32
Yeah. Yeah. And it, it really, it put it put it into perspective for me. And I'm sure a lot of people will agree for people who are in the military that are deployed, and see combat and deal with all sorts of different things or anything like that any any kind of situation where you're, you're away, you're working hard, you're pushing the limits, and especially people who are away for so long, and then they come back. I mean, I couldn't even imagine if I was if I was gone for four years. Right? Um, I adjustment must be absolutely incredible.

Scott Benner 33:08
Because that boat, that boat starts to become home. Absolutely. Yeah. And all the things that you have to do and the people you do it with. It's it's the quick adaptation is kind of one of the great things about being a person is it how quickly you can adapt to things if you if you are willing and or and or don't have the opportunity to say no to it. Yeah. You know, just can't fight it. Really, I guess is the idea.

Lindsay 33:33
You can't fight it. You have to adapt. And yeah, that's what we're trying to do. And, and we all do it. We all can do it with a little bit of, I guess, training of the brain and just you know, dealing with it. And yeah, you'll make it through. Absolutely.

Scott Benner 33:50
So what did that lead to? Then? What what's the next adventure you took after that?

Lindsay 33:55
So I after that, I can't think of a specific adventure right after that.

Scott Benner 34:02
You go to bars or anything? No, I

Lindsay 34:04
did not. Do not not yet. Um, after that, though, I had so much see time. And that's time actually documented time on the ocean. I went and got my captain's license from the US Coast Guard. So it took a little while I also had to, I had to take classes, I had to go through a lot of different training. And I did that with the help of you know, being able to sail here and knowing a lot of people with boats here in New Jersey. So I did that. I when I was 18 Yeah 18 I got my my first captain's license. It's called a six pack license so you can take out six people for hire on a limited size boat. And then when I was 19, I ended up upgrading to what's called 100 ton masters captain's license. And that was awarded to me as well, because I had so much time and experience on the water. And that was something that I mean, diabetes related, dealing with the United States Coast Guard and their application process, being a diabetic was actually really difficult. Um, it was quite a task.

Scott Benner 35:27
Lots of proving and reproving and doctor's notes and things like that, or,

Lindsay 35:32
yeah, yeah. So, I mean, they're giving you a piece of paper that is saying that you are responsible for lives of, you know, so many people up to 100 nautical miles out to sea, and they want to know that you're not going to go low and pass out. They want to know that your vision is where it should be. And there's a lot of risk in in doing that for them. And I do understand that. But I was successful. In doing that I actually had to provide all of my medical records from when I was a kid up until that point, and just write endless amounts of blood sugar logs and explanations and everything.

Scott Benner 36:18
What did you end up doing with the license? Did you start fishing the oceans? Or

Lindsay 36:23
no, no, I didn't know I actually, I still have it. I still have it. I still, I still record my sea time. Anytime I'm out. I still, you know, keep a record of it. So that's how I keep my license active. But I don't have a career doing pirate things. Just I sell real estate.

Scott Benner 36:41
Was it just one of those? I sell real estate? Was it just one of those things that you had the time and you were a kid, and it was another thing to try to accomplish? And so you just kept it's almost like playing soccer your whole life and then one day just going I'm not gonna play soccer anymore.

Lindsay 36:57
Yeah, I definitely wanted to it was a huge accomplishment that I wanted to, you know, really gone. And just to prove it, I there was also a point in time where I thought well, maybe maybe I could do something like this for living. I'd love I love to teach sailing. I would love to have a business like that, you know, something along those lines, but I never ended up doing anything like that. And at this point, it's something that I have a decent amount of knowledge about. That will only make me a better boater. You know, like, if I'm out with a friend or on on our future sailboat that we wish to get. Um, it just it only adds to the, you know, feeling of being able,

Scott Benner 37:42
I think it's amazing to have comfort level around something like that. I don't think I'm if I'm gonna be honest, let me think. I don't think I'm comfortable more than about. I'm gonna say 40 yards off the coast. Yeah, that's pretty good. Yeah, that's about where my comfort level ends. Like when you said you jumped in the water to bathe. I was like, why would anyone do

Lindsay 38:07
it's such a weird thing to because you're like, wow, it's it could be so deep underneath your your feet.

Scott Benner 38:12
Sharks. That's all I was really thinking. So, yeah, how many people have you seen killed by sharks?

Lindsay 38:20
None. Really? Okay. Yeah. I don't want I don't want to see No,

Scott Benner 38:24
no, no, I just imagined happened every day. Like one of the kids felt like oh, there goes Jill. Boom. There she goes. She Oh, Hi, Jill. I understand. That's not how it works. It's just that unknown darkness thing is yeah, oh, yeah. A little more than my brain can can wrap itself around. I actually thought I was gonna die very close to St. Thomas once while snorkeling because you said you flew into St. Thomas. So once or twice in my life I vacationed in St. John, which is an island right nearby with my sunlight were snorkeling. And this mass came at us. And I'm I'm not over exaggerating that the mass looked like it might be 25 or 30 feet across and high. And it was kind of round and I thought, Oh, I didn't know animal this big existed. We're all gonna die. And it was coming at us. And we were like, you know, he was younger, but I'll say he was clutching me, but you know, maybe I was holding on to him as well. And, and but it was a school of puffer fish. But at a slight distance. It looked like one mass. Now once it came past me, I was like, this is beautiful. Yeah. And they're adorable. And then I soaked it in and we swam with them for a little bit and I got right back to the beach.

Lindsay 39:38
Yeah, well, yeah, that's that's scary. You don't know what's out there.

Scott Benner 39:43
What's what I'm saying? So you just take that's how dirty you had to be to jump in the waters. But I'm thinking like, this is worth it. I'm getting in. You kind

Lindsay 39:51
of Yeah, you have to. But it is it's something like you really don't have to. I mean, you could you'd be fine. If you didn't shower like every day now I'm charging everyday now, but oh, now

Scott Benner 40:03
you're up on it now. Oh, yeah. Oh, yeah. Well, yeah.

Lindsay 40:07
The trip turned me into like, a little bit of a princess if we travel and like I only want a really nice hotel, it's got to have a really nice bathroom.

Scott Benner 40:16
Yeah, I'm not cleaning out my bits in the ocean again. Thank you. Were you an anomaly on that trip as far as medical issues? or were there other people?

Lindsay 40:27
Somewhere? Yeah, I was the only type one. I'm not sure. I think they have had several type ones through the years. But yeah, I was the only one on our trip. And, you know, of course, there were a couple other people who had to take prescription medication from time to time for whatever migraines or something like that. But other than that, yeah, I was, I was working with one of the crew. Her names charity, she was an amazing woman, she was an RN, and also somebody who had spent a lot of time on the Water Sailing. And she and I work together every day, I would go and meet her and test and she would keep track of everything. And she would help me just kind of manage as best as possible. And I don't think I had any real issues. With management I did. I never had any serious lows or serious highs, it was all pretty, pretty well done, I guess,

Scott Benner 41:28
even with the transition to the other insulin. Mm hmm. Yeah, it's this company still, like they still do this?

Lindsay 41:34
Yeah, they do. And I actually follow them on Instagram, they, they just posted today that they were right off of our coast, right off of the New Jersey coast. So they do shorter term trips. They'll do like a trip from Florida to Maine. And they'll do it a lot faster than our trip was done maybe in like the course of a month or so. But they take high school and college kids out. For all these experiences.

Scott Benner 42:04
Do you think that a lot of these people turn into people who work on the water as adults? Or is this just like a floating hippie commune for kids? Exactly?

Lindsay 42:15
Um, that's a really good question. So I'm sure a lot of people are kind of driven to do something like that. If you love being on the ocean, if you love living near the ocean, then yeah, you may end up doing something that involves that. But I know just from keeping, keeping in touch with a lot of the people that I was on the on the boat with. One works for a sailing magazine, one's a professional skier. A lot of people have, you know, financial positions and all sorts of different stuff. So it's cool to see everybody, you know, doing their own thing. And I feel like, all of those people are also all out doing new stuff. They're they're not staying in a comfort zone. They're always kind of looking for the next thing,

Scott Benner 43:02
right? That's really fascinating. I genuinely can't wrap my head around it. But I think that's just how I grew up, you know. So everything you've said so far, in my mind makes you eligible to be institutionalized. But, but it's fascinating, and I really, I, there's part of me that wishes that it sounded to me like oh, my gosh, yes, let's do something like that right away. Yeah. But um, it's, you've always been like that.

Lindsay 43:33
Yeah, yeah. And I, honestly, I think I have that sort of drive and curiosity from being a type one. I just diagnosed at six years old. It literally almost meant nothing to me. I was like, Okay, this is this is life now, whatever. And it's always presented challenges that I've obviously had to overcome. And in doing that, it's kind of the same concept. All right, well, we made it through that lets you know, what's the next thing and then it becomes just things become normal. Not I don't wanna say problems, but any kind of like next. Next adventure. Next challenge is the same premise

Scott Benner 44:21
speed bumps, right? Something happens, you're just like, Okay, we'll take care of this. And then we'll go to the next thing. And I but that one takes a special person. I mean, somebody who's, I don't know fine tuned for that kind of experience, because there are plenty of people who would get diabetes when they were six and grow up and just be burdened by it the entire time. Why did your parents do anything? It's so hard for me to imagine your parents as being valuable because it seems like they were just like, What are you want to do? Yeah, sure, go by. But I'm sure they weren't like that. Like what did they do for your diabetes? In your room? Oh

Lindsay 44:56
my gosh, my mom, both my mom and dad Were super involved in, in my care. They weren't, they never hovered over me. So they never, you know, they weren't ever like, oh, you need to report back to me about this. And that never was it like that. But somehow they found a balance of just being able to guide me, I guess even as a six year old. So, yeah, my mom was involved with getting my friends involved, and, you know, helping helping me figure out the right ways, and the wrong ways to do things and, you know, solving those problems.

Scott Benner 45:37
Um, back then, though, really, it was I end up saying this a lot. But like, it's if once he gets dizzy, make sure she eats something like it was that kind of thing. Regular and mph days, right? Yeah.

Lindsay 45:48
Yeah, it was, it was Yeah. You know, do you not feel right? If you don't feel right, you have to go down to the nurse or tell your friends. And you know, just say something. Don't wait until you can say something. And, yeah, when you're so little. And I don't know if this is all kids. I really don't I don't we don't have children of our own yet. But I was so little. And I was like, alright, well, that that sounds fine to me, I'll do that. It wasn't like, I didn't want to do it. I always wanted to try and just be better. And learn as much as I quit about it. And I've, there's there were times in my life, especially as a teenager, where I was like, I don't I hate this, like, I don't want to do this anymore. We all we all get get to that spot. But um, you know, it would work itself out. And then you're like, Okay, I know, I need to do this. Do you think I'm gonna die?

Scott Benner 46:54
Yeah, there's a good reason. Do you think that the the ideas that are used now for management, they're more specific, and the outcomes are more easily tracked through things like variability in a one C and stuff like that? Do you think that it was easier as a child because that wasn't part of it? Yes, yeah. And the expectation was, just, it's it's kind of, it's interesting, because it's, it's one of those ideas that gives one hand takes away the other because it's easier because they didn't have the ability to to be finer with, with decisions. And at the same time, many more people were having worse long term outcomes because of it. Yeah, but you got to just go out on that boat. Like it was nothing.

Lindsay 47:44
Yeah. And that goes for everything. When I was little, when I think back about it. Um, there was there, you weren't given a lot of details. So even if I was testing six or seven times a day, which was probably pretty normal. Yeah. You weren't given the whole picture. And in not getting the whole picture, you're, you're okay with what you're seeing, then it's, it's done. You don't have to think about it anymore. So there's a lot less stress and kind of, there's a little bit of more detachment to that. Those specifics, but now, I mean, I'm checking my Dexcom all the time. Every day, I couldn't even tell you how many times I check it in the day, my endocrinologist asked me when I go to see her and I'm like, I don't know maybe 100 I have no idea. It's a lot.

Scott Benner 48:37
You got to get your we got to get your alarm somewhere where you can where you don't look if it's not beeping, so when

Lindsay 48:44
I turned my alarms off, and I just I mean, I have my my goal range pretty tight. But I turned my alarms off and I just I just look takes it takes a millisecond look alright on

Scott Benner 48:57
just stay in it like that. And that and that's good for you. So if it works, then it works. And that's perfect. Yeah, yeah, no kidding. Okay, ready? Let's make up a scenario. You and this boy, make a baby. It grows up. 15 years old. It has diabetes. It's wearing a CGM, an insulin pump and your made up son or daughter says, I want to go to St. Thomas get on a boat and then sail back to Maine. I'm going to be gone for five months. You go. Yes, sir.

Lindsay 49:34
Be honest. So I we would obviously discuss it together. But I would feel confident in that happening.

Scott Benner 49:47
How are you keeping some cold on a boat?

Lindsay 49:51
Oh, that's a good question we had what did we have? We had some kind of refrigeration system I'm

Scott Benner 50:00
thinking and I think generator the boat, maybe

Lindsay 50:03
we did we had a generator. But I think my insulin was actually just kept in a cooler bag that we changed out the, like freezer packs to as much as we needed to.

Scott Benner 50:17
Okay, so you were on top of that as well. That probably felt a little dire right because of it. I mean, you must have thought if it gets warm, it's going on where am I going to get more from?

Lindsay 50:28
So I don't think I was actually thinking about that at that time.

Scott Benner 50:33
Is it? Is it possible? I should call this this episode? Ignorance is bliss.

Lindsay 50:38
Yeah. Totally. I don't think I'm sure. My parents thought about that. And, and the crew and the, you know, the nurse.

Scott Benner 50:50
I gotcha.

Lindsay 50:51
I'm sure it was planned out.

Scott Benner 50:52
Yeah, not you. I got I thought in my mind, it was tied to a fish. And then, and then the fish was tied to the boat. And then that's, I don't know why you'd have to put the fish in the line. I just that's how it was in my head. And, you know, I guess because of the Little Mermaid, I thought maybe the fish would just stay with you keep the insulin in a cooler part of the ocean and come up when you wouldn't have been. In my cartoon that's out happens.

Unknown Speaker 51:17
I love it.

Scott Benner 51:18
I've watched that. Of course you would. But I'm trying to imagine putting art in I think the five months thing. Okay. Right, I can figure that out. The distance thing? Okay. In my mind is the boat part. Right? No, that's not sensible. But that's the part that sticks with me.

Lindsay 51:44
Yeah, I don't, I don't blame you. I mean, that that's a huge variable. But it's still, you're still gonna manage basically the same way. You're still gonna do the best you can and be mindful and use the tools that you have. And, you know, it's, it'd be different if somebody was like, I'm going to put you on a on a desert island with, you know, limited supplies. All right, well, that's probably not going to work. But yeah, it can be done. And you know, if we have a baby, who's type one, like the thought of that doesn't really scare me. And although that may change, right now, if I think about it, it's just like another challenge, right? So we need to we need to figure this out. And we will cool.

Scott Benner 52:42
If all I can think during this whole thing is about all the people I've seen over all of the years, say like we're going on vacation, I'm so scared. I don't know what the and they're going to Disney or they're going to you know, yeah, we're going to the beach for two days. I'm so worried about diabetes, and you're just like, I got on a boat. I was there for five months. You know, I couldn't really wash myself. Anyway. It was fine.

Lindsay 53:11
Yeah, we did. We did fine. We did the best we could and that's it.

Scott Benner 53:16
Really great message in this that that I hope is coming through you know, and and what it left you with and it's carried with you? It seems like your whole life like that there's this idea that nothing had happened to you that you couldn't figure out because you got put into a situation where you had to learn a bunch of stuff you didn't know why you were basically abandoned on a floating Deathtrap because seriously for anyone who doesn't think boat and then their next thought isn't boat could leak all die. I don't understand your thought process. That would be in anything though. Oh, sure. plane plane gets hold on it. I die. No, no, I've gone through all of it. Don't worry car car crashes into something. I don't worry. I've got it all worked out. I'm not saying live a life of fear. I'm just saying I've been on a ship. I've been out in the ocean. I've you know, I've been in airplanes. I will go on an airplane again very soon. You know that? I'm not scared. I don't do it. But it's if that's the first thing you don't consider while you're considering the grand scheme of it. I don't get people who don't do that. Like the ocean is endless. It goes so far. There's really no and there's no oxygen there. I don't know if anyone knows that or not. There's no

Lindsay 54:36
zero. Yeah, it is quite daunting.

Scott Benner 54:40
I can't wait for you to have a kid who's like real timid and like scare everything.

Lindsay 54:46
Well, we're we're getting a puppy. I'm in a couple of weeks. And we're like, you know, we're going to get this dog out to the beach and on the kayak and anywhere in the pool and with any kind of situation so that we can have a you know, a dog who's a companion for adventures?

Scott Benner 55:09
I think that's a lovely idea. I think so. Everyone should start with a test dog.

Lindsay 55:15
Yeah. Before before the kid.

Scott Benner 55:17
Yeah. I don't know your Do you think you want? Do you want children?

Lindsay 55:22
Yeah, we do. Probably not right away, although I am 34. So I know, you know, time maybe a little bit. Yeah, on my side,

Scott Benner 55:32
you got to be careful. I will tell you a daunting story of me planting a bush this week. And my hamstring being tight for three days afterwards. So you're very little time left? Oh, no. Oh, it was that bad? Well, I mean, I had to bend over a number of times. So

Lindsay 55:53
yeah, that's tough. Oh, you

Scott Benner 55:55
have no idea. And it got so like, two days after, I want to be clear. I was outside all day bending over not just for one bush. But that's doesn't make the story much better. But like a day or so later, it was just so tight. And I said to our No, Mike, I'm gonna lay down on the floor. Oh, yeah. Put your knee into my hamstring. Yes, bullshit. And as much as I scream, don't stop. Just just keep going. And by the time it was over, I was just like, wailing like a five year old. Like Stop, stop, stop. She's like, you told me not to stop. I was like, Get off.

Lindsay 56:37
Better now. And

Scott Benner 56:38
that really actually helped it a lot. Yeah, sorry. Good. Yeah. You know, and some people use like little massage guns. I just I used the massage Arnie. I was like, hey, yeah, jam it in there until I can't feel it anymore. Nope. Yeah. Okay. Anyway, my point is, you're gonna get old fast. And in the last, like, in the run up to 50 it happens really quickly. Yeah, all right. Yeah. And you got like a nine year old and he's like, I want to get up early. And then I'm gonna do this. I'm gonna do that. You're gonna be like, um, I used to be on I once. I can't leave me alone. Oh, no. Anyway, I'm sure it'll be fine. You're probably in much better shape than I mean, obviously, most people are in better shape than me. But I assume that you are. Well, you run right, like a lunatic?

Lindsay 57:23
Oh, yeah. Definitely a huge part of my life. Definitely huge part of my diabetic life. started running about 11 years ago, I woke up one day, I was like, I don't like my body, I, you know, I need to lose a couple of pounds. I just I want to feel better. So I just started running. And from that point, I kept going. And eventually you hit a certain point in running where you get in shape, and it becomes a little bit easier and then easier, and it just really just builds on itself. And it's it's therapeutic for me. And it's great for bringing sugars down. It's great for my management, stress levels, whatever. There's a billion different things.

Scott Benner 58:17
You're like two story shy being Forrest Gump.

Lindsay 58:22
So last year, I Well, actually, I've run I've run a lot of different races. But I I've run a couple of full marathons. Actually three of them the New Jersey marathon, I've done three times. And then last year, when COVID started in March, I was stressed, I was worried about my business and you know, just it was stressful. So I just went out and I ran, and I ran my own marathon alone 26.2 miles on May 17. And it was absolutely amazing.

Scott Benner 59:01
The Lindsay Invitational

Lindsay 59:03
It was literally just me. And it was awesome. There was nobody, nobody there. Nobody knew. Nobody cheering me on. And it was super cool. Oh, how long does that take? That took me just under four hours. It was about three hours and 54 minutes.

Scott Benner 59:24
And you didn't make you weren't telling people you're trying to see you're you're old enough that you didn't try to turn it into an Instagram account and get rich. You're just like, I'm gonna go for a run. Nobody else no see this.

Lindsay 59:37
Did it? I just told a couple of close friends just in case like so they knew I was out.

Scott Benner 59:43
Somebody could come find you if need be. Yeah,

Lindsay 59:45
yeah, just just in case. Um, but yeah, and I actually met my mom. Halfway through. She met me for some some energy gels and water and stuff. But other than that, I didn't tell anybody and then I got back and you know, of course I posted on social media then but, um, yeah, it was, it was awesome. And those things are totally, totally attainable for anybody as a type one diabetic.

Scott Benner 1:00:11
See, I'm what I'm hearing is young people need to hear is that everyone doesn't need to know what you're doing all the time. No one cares. Just go do your thing. And, and it's just as fulfilling when no one knows that you did it. Right.

Lindsay 1:00:23
It was more fulfilling doing it. In that in that setting? Okay. I mean, it was just, I went out, I didn't have a plan. I didn't have nobody knew. And it was like relaxing. Of course, it was difficult. I mean, three, almost four hours of running is difficult. But it was it was amazing. And I'm so glad I did it.

Scott Benner 1:00:48
Yeah. Okay, that's really cool. Did it carry you for a while through the the anxiety of like, Is nobody will? I'm assuming nobody was buying or selling their house, the beginning of COVID?

Lindsay 1:00:59
It did. Absolutely. I had a little well, I had a lot more time off. So that's why I was I was really able to do that and kind of trained for it a little bit. Yeah, absolutely helped. It helped to keep my mind busy. And when I'm sure runners agree. When you're out running, sometimes your mind just shuts off. Sometimes you're solving problems. Sometimes you're whatever, talking to yourself. But it's so yeah, I handled a lot of the stress through that those experiences. And then of course, it wasn't quite like totally dead, the real estate market, but um, towards the beginning of May last year, things really, really started to get busy. And it's just gotten absolutely busier and busier since then

Scott Benner 1:01:47
say now, right? Like this is it's approaching, like, would be considered a bubble at some point, right?

Lindsay 1:01:53
Yeah, it is. Um, it is. It's incredibly competitive. There's not enough homes on the market. And it's just gotten to the point where it's, it's just, it's crazy. I don't I don't know if it's really ever been like this. I

Scott Benner 1:02:08
spoke to a realtor recently, which was just coincidentally, but he told me that he sold a house that he described as terrible. And I was like, okay, he was just no one deserves that to live in this house. I was like, all right. He said, I sold it for $420,000. And yeah, to a person coming, trying to like escape the city. They were trying to get out of Brooklyn, I think. And he said the guy came, saw the house and said, Okay, and just gave him a check for it. Like it was just like that. And they he paid like 20% over what the other offer was. And the guy just kept reiterating. He goes, No one should have to live in this house. And I was like, okay, goes bad house bad house. And I was like, Yes, he is. But everything's so expensive right now. And the people who want to get out of the city really want to get out of the city. And they have money. Because you know, I mean, this is this is a person who I mean, for clarity is the person who apparently bought a foreign $20,000 house, and it was like a steal for them. Yeah, they were like, oh, here, take it out of the right pocket of my pants. Like, give me kind of like that, right? But still, the guys like the house is just a disaster. He goes, I don't even know what we'll do with it. Oh, my God. I was like, okay, yeah, but he wanted it that bad. So that's what's happening. People are just getting way more money. But the problem is if I decide, Oh, I'll sell my house make a bunch of money. I still have to go buy another house. And then I'm gonna overpay for that house. Yeah,

Lindsay 1:03:37
that's, that's a problem. That's a problem as far as just getting somebody avoiding somebody being homeless. If somebody wants to sell and make a lot of money. Yeah, they're going to be paying a lot of money for their new home. But they also the the mortgage interest rates are so low. So although you're paying a premium, your payment may not always reflect that your monthly payment. Yeah, it's, it's, it's incredible. I mean, it's just I'd love to see studies on this, in the future, just how this thing happened. And a lot of these people, there's a lot of people here who are moving from the city. But a lot of my clients are people who were quarantined, who are home, they're working from home, they're trying to work out at home, and they're like, Man, this house sucks. We need a new house.

Scott Benner 1:04:27
They want more space, or or yeah, we're stuff. We refinance during the I don't know why my voice just broke like that. But we refinance during COVID and opted to keep our payment the same and knock yours off. Okay, so yeah, that was you know, but there was such an interest rate reduction, that without my without my payment moving. I think we knocked seven years off the mortgage. That's amazing. Yeah. So it's like, Alright, let's do that. You know? Yeah. Good for you. Something good is gonna come out of this. Absolutely. So I was like, Alright, let me do that. But yeah, I'm fascinated by that idea, because I guess you could sell and then rent until everything goes the other way and then take advantage of somebody disastrous decision during the bubble, which sounds horrible, but I guess that's the only real way to make money on the sale and not lose it on the purchase.

Lindsay 1:05:19
Yeah, rentals are tough now to run. I'm sure like, New Jersey's probably the highest price. Everything rental sales, you name it. I mean, people are probably listening from around the country saying 420,000 will get you like a mansion.

Scott Benner 1:05:35
Yeah, there's someplace here. Yeah. knows this stuff's expensive. And doesn't New Jersey to have that weird law. Like if you sell your house and leave the state don't have to pay a penalty.

Lindsay 1:05:47
Yes, and no. There's a lot of stipulations to that. Um, yeah, I mean, whole other conversation. But yeah, there's

Scott Benner 1:05:56
no way around it. Cuz I am gonna get the hell out of here at some point. Are you I know you were born here, but I wasn't.

Unknown Speaker 1:06:04
Where do you want to go?

Scott Benner 1:06:05
somewhere warm, but not, but not humid, somewhere where it won't snow and where I have some sort of access to the ocean for my wife. Okay, so I don't care where that is to be perfectly honest, as long as it fulfills those ideas. Sounds good to me. So I mean, I would move to, like, if I was a wealthy person, I would move to a place like Wyoming in the summer, and then I would bug the hell out of there before it froze over and go somewhere else. Like if I had like, a perfect scenario would be like, I'm sure all of us. I'm saying this. Like, I'm special. I would like to chase the weather if I could. But I also I also when I think of that, in my head, I go until I get so old that one day, I'm just like, oh, I'll just sit here and freeze. Never mind. I don't feel like making the trip. Forget about it. You have no idea what's about to happen in the next 15 years.

Lindsay 1:06:55
Oh, gosh, it sounds it sounds tough.

Scott Benner 1:06:59
I it's not? Yeah, it's not unpleasant. I like being older. Better than I like being younger. Okay, but I would like to be able to shape how I felt when I was younger, into my knowledge from when I was older. That makes sense. Yeah. And I don't know, that's not gonna happen. So I'm just gonna wither away with all these thoughts in my head. Oh, no.

Lindsay 1:07:22
You're doing amazing things. So I should be proud of yourself.

Scott Benner 1:07:25
Oh, you're very nice. i That's I appreciate that. Thank you. Of course. I'm gonna let you out of this. I appreciate you doing this twice with me. I think you might be the only one I've ever done something twice with but you float on a boat for five months. I was like, That can't be something we don't find out more about. So I think you're I think you're kind of amazing for doing that. Oh my gosh, yeah. Oh, even though i i imagine at that age, you didn't think so? Right? You just thought like, this is cool when I don't have to go to high school for five months.

Lindsay 1:07:56
Yeah, kind of. Yeah.

Scott Benner 1:07:58
It was more amazing than you thought. So.

Lindsay 1:08:01
Well, thank you so much. I'm glad to be back. And I appreciate again, everything that you're doing with the podcast. It's it's awesome.

Scott Benner 1:08:09
And the Facebook page. Isn't that nice? How nicely Yeah, we got a little something a little bonus out of the podcast on that Facebook page. Yeah, yeah. I'm pretty thrilled that there. It is. So repetitive for me. It's not for other people. It is for me, like because new people come in and they ask questions and like, there's this little bit of me, you should see me like, I'll see it pop up. And I'll think I'm going to answer that if no one else does. But oh my God, I hope someone else answers this. Because I am not a full time like, like, I'm not Dear Abby, you know what I mean? Like, you, you. There's so much traffic in there. There is it could be. And I looked at it the other day, like I looked in on it a couple of times other day. And I was like, Oh, look, somebody got celebrating a sec, congratulations. I see a question I can answer fully with one I'll answer. Sometimes I see questions where I'm like, Oh, I could I could ask another question that would make people think a little bit like I'll do stuff like that. But I realized the other day, like I can't keep up with this page. Like it's just it would be a full time job. Like you'd have to pay somebody to stare at it 24 hours a day, to keep up with what's happening on it. It's really fascinating. So that's awesome. It perpetuates itself and keeps itself alive. So I'm happy Absolutely. But anyway, I appreciate you appreciating

it a huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kaipa pen at G Vogue glucagon.com Ford slash juicebox you spell that GVOKEGLUC AG o n.com. Forward slash juice box. I want to thank everybody again for buying me a cup of coffee and buying me a coffee dot com forward slash Juicebox Podcast and also want to remind you that the diabetes pro tip and other episodes are all listed for you right there at Juicebox Podcast comm just scroll down it's all there. Alright, here comes the music

the Harvey Gammage No kidding, right? Just put their kid on a schooner. It's like a boat made out of wood and just like hey, good luck. Don't I can't I can't get enough of this story. I should say something meaningful here. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. How was that pretty good.

#578 Allergic to Insulin Part II

Dr. Bonnie McCann-Crosby, MD is here to talk about a potential work around for severe insulin allergies.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 578 of the Juicebox Podcast.

You may remember episode 504 allergic to insulin where a young girl from cannula came on to talk about how she was really like viciously allergic to her fast acting insulin, her mealtime insulin. And we talked all about how she worked it out. Well, a little later, I heard from a doctor in Texas who had a patient who was also suffering from the same thing. And a lot has happened since I talked to that doctor, I'm going to tell you about it here. And she's going to tell you about what they did, and how they took care of the problem. It's kind of fascinating. You're gonna love it. And I think in a couple of months, I'm going to get this doctor's patient on to talk about what they learned, which is different than what the first person learned for Oh my Wait, do you hear? 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. We're becoming bold with insulin. Hey, so far this month, we've added like 140 people to the T one D exchange registry, have you taken the survey yet have to be a US citizen. But after that, it's T one D exchange.org. Forward slash juicebox take you less than 10 minutes. This episode of The Juicebox Podcast is sponsored by touched by type one, please go check them out at touched by type one.org or on Facebook, and Instagram. Today's show is also sponsored by the Dexcom G six continuous glucose monitor, you're going to want to go to dexcom.com forward slash juicebox to get started today. Head over there right now get the CGM technology that my daughter wears. It's absolutely amazing.

Bonnie M. McCann-Crosby, MD 2:03
Hi, I'm Bonnie McCann Crosby. I'm one of the pediatric endocrinologist at Texas Children's Hospital in Houston, Texas. Thanks for having

Scott Benner 2:12
me. No, thank you for doing this. I appreciate it very much. Let's see if I've got this right. I put up an episode with Stacia, right, and she's allergic to insulin. And I talked to her about like, you know, like, everything she went through, and it was really kind of fascinating. I didn't realize how impactful I mean, I guess I didn't even realize it could happen but but that she's allergic to this insulin couldn't use it had to get this specific kind of, I forget, like injection port or pump site or something like that from Germany, and they weren't gonna make them much longer and the insulins like $14,000 a year, and I think this is a pretty good encapsulation of that. That whole thing, but then I got an email from you. And I don't know how that happened. So you fill that part in for me?

Bonnie M. McCann-Crosby, MD 3:03
Yeah, no. Um, so I obviously see a lot of pediatric patients with type one and get to chatting with the parents, and a lot of them had mentioned your podcast and how they really enjoy it. And so I was like, well, I'll check out an episode. And the episode I first happened to listen to was the one with Sacha and the insulin allergy. And got me to thinking about other cases that I'd seen similarly, which is why I reached out to kind of get more information.

Scott Benner 3:36
Cool. So it is complete happenstance that, so I'm assuming that, you know, some of the people who listen to the show, they hockey a little bit about the podcast, right? And they're just, they, I'm assuming they say you got to listen like they, they give you the wholesale. And then finally you're like, I'm gonna listen. And then you land on an episode. Boom, out of the gate. And you're like, Oh, I've seen this before with some of my other patients.

Bonnie M. McCann-Crosby, MD 4:02
Yeah, it was. It was crazy. Actually. I was like, Wow, I can't I can't believe this is the episode first one I actually listened to.

Scott Benner 4:10
Did it make you wonder what secrets are in the other ones?

Bonnie M. McCann-Crosby, MD 4:14
It has? Definitely.

Scott Benner 4:17
So you listen to that. And you think you have current? I know we can't speak about your patients specifically. Although although it looks like maybe one of them might come on the show. But but so you had somebody who you were thinking up right when you saw this like somebody who you're treating currently,

Bonnie M. McCann-Crosby, MD 4:33
yeah, no, I and, you know, patients with similar reactions to Sasha significant allergic reactions, skin reactions, and things like that and just trying to think about other ways to to treat these patients and because this is very rare, and not a lot is known about what to do in these situations.

Scott Benner 4:57
So So highlighted for me A person who has this allergy injects the insulin what happens? Generally?

Bonnie M. McCann-Crosby, MD 5:04
Yeah, so I mean, in patients with these kind of allergies, you know, they can get significant like skin reactions where it's almost like major hives, you know, huge raised area, red on the skin. Extremely large, extremely painful. And, of course, you know, this is every time you inject, right, and so if you imagine, you know, if you're on multiple injections a day, every single time you give an injection, you've got these huge reactions, and they last for days. So this is not just, you know, it's it's done within a few minutes or an hour, it's it's days later still dealing with these consequences from each shot, so and incredibly painful, incredibly frustrating. And then, you know, what can happen is you're not getting absorption of the insulin, right. And so blood sugars are through the roof high difficult to control, increased risk of DKA, because you're not getting, you know, the life saving drug that you need to keep blood sugars in check.

Scott Benner 6:06
So aside from the fact that they're having a terrible reaction to the insulin, I guess the inflammation is stopping the uptake of the insulin as well. Yes, yes. Okay. So now, so then it, does that force them to use more, which increases the reaction?

Bonnie M. McCann-Crosby, MD 6:21
Absolutely. Absolutely. In You know, oftentimes, you know, we're talking, you know, very, very tight insulin to carb ratios, and just nothing is really working. I mean, we're talking like one to two, one to three, insulin to carb ratio.

Scott Benner 6:36
So what do you do? Like, I mean, kind of walk me through, like, pick any of your patients in your head, I don't need to know their name or their details, but the first time you see this, how do you how do you try to help them?

Bonnie M. McCann-Crosby, MD 6:48
Well, um, you know, we try different types of insulins, obviously, if one is not working, you want to kind of go through all the other options. So if Humalog is not working, okay, let's try Novolog. Let's try a pea dry, let's try, you know, fiasco, let's try any different type of insulin, to see if that will work and create a similar or less, you know, less similar response, you know, and that can even prove challenging as they're going through this. And so, you know, oftentimes, we'll get our allergy and immunology colleagues involved as well to see if there's anything we can do, potentially topically, like, like a steroid cream, or even orally, like anti histamine, anything that can kind of mitigate the reaction, minimize it. And so that's kind of the starting place for these type of cases.

Scott Benner 7:42
So there are there are different levels, like are there some people who you can treat like with a topical, something that that keeps it reasonable? Or, but we're not talking about that right now? We're talking about, like, really extreme cases?

Bonnie M. McCann-Crosby, MD 7:55
Yeah. You know, and, of course, you know, there's a lot of people that do have like skin sensitivity to, you know, maybe a little bit of an air area around the injection. And it's more common, of course, with like adhesives, with pumps and things like that. And then, you know, yes, you can do topical things. But when you get to the level where, you know, you've got significant, you know, inflammation and a reaction to that level, you know, you got to start thinking, Okay, what, what else are we going to do long term, right? Because even if a person were to become, you know, tolerating a new insulin for a little while, that doesn't necessarily mean they're not going to develop a new reaction, right? So you still have to monitor and maybe they're doing okay for a little bit, and then potentially, they could have another reaction later on to a new insulin. So it's definitely a challenge to try to figure out like, what's the long term game plan for this these cases?

Scott Benner 8:49
What are the most extreme things that you've seen happen to people's like day to day life because of this?

Bonnie M. McCann-Crosby, MD 8:57
I mean, you know, DKA is obviously the most extreme, right, because, you know, they're not getting absorption, they're in the hospital multiple times, in, you know, blood sugar's run in three hundreds plus all the time, and you don't have a lot of reserve, right. So, you know, if you are missing, at least even like a fraction of absorption, you're going to be at higher risk to go into decay. And then, you know, just on a day to day basis, I mean, you know, think about it, if you are having pain every single time you inject insulin you become maybe you don't want to inject your insulin, right, maybe you become kind of depressed because every single time you do this, it's causing excruciating pain over and over and over and over again, and there's not really a good, you know, other solution for you. And so that, I mean, that's the worst part of it, I think, is a psychological aspect.

Scott Benner 9:55
I would imagine too, it could lead to eating issues like oh yeah, refuse Right. And so

Bonnie M. McCann-Crosby, MD 10:02
it may you know it, you know, patients may choose to kind of carb restrict or you know, more keto, but that, you know, in growing children is obviously a concern, right, they need, you know, certain amount of carbs to grow and so that that definitely becomes challenging.

Scott Benner 10:21
So, I want to just be clear, like stopping here for a second for people listening, like my daughter doesn't like vs burns her right? Like if she wears a pump with the Aspen and for a couple days, she says the spot is sore, like so we just say okay, like she doesn't her body doesn't tolerate something about vs very well. But that's that's not what we're talking about, like, about like, significant severe things to the point where if you go back to Episode 504, and listen to the conversation with Sasha, like, she's having all of the issues that that Bonnie's describing now, like, and I feel like I should be calling you Dr. McCann Crosby. How do you want me to talk to you? What do you want me to does? Either way, it doesn't matter. I'm gonna go with Bonnie. So I hear just enough Texas and you're you're making me feel very comfortable. So this is a big deal. And and the stuff that that that Bonnie is describing here is super real, like people not eating there. It can't get their blood sugar's down, ending up in DKA. Like and not in, there's no end of it. Not going to stop for them. I don't want to give the whole thing away about 504 in case people want to listen to it, but oh god, Bonnie, this isn't Can you hold on one second? Um, so yeah, this never happens. But hold on, yeah. Are you using insulin? If you are, wouldn't it be great to see what it's doing. And I mean, by what it's doing, I mean, what it's doing to your blood sugar. Don't you want to know how quickly your blood sugar is moving. And in what direction? You can you know, with the Dexcom, G six continuous glucose modeler, speed, direction, and number, all at the touch of a button, really, you could just open up your Dexcom receiver and there's the information you need, or you can use your phone as a receiver. My daughter uses her iPhone. Let me pull up her blood sugar for you right now. Interesting. 123 is her blood sugar. And I can see it starting to come down. Right, so she's eaten recently, a higher carb meal. That's kind of sticking to her a little bit. But I can see the insulin working. And I can see it's crazy. I'm just looking at the graph. And I can see her blood sugar kind of bending, right, like it's a little stable. And now it's sort of curving down. It's it's telling me that the Bolus we use this working and you can see all this as well on your Android or Apple phone. I'm a follower of my daughter, she can have up to 10 My wife is also following that would leave eight more nurses family members well meeting people on the block. I don't know you whoever you want, you can let whoever you want follow. You also don't have to let anyone follow it's completely up to you. Dexcom is going to tell you the things that you need to know to make great decisions with insulin, speed direction and location of your blood sugar are you 88 unstable for 88 and falling big difference right 88 and stable Whoo, all good falling might need some carbs going up might need some insulin. All right in front of you on this easy to understand graph. It's just a line it kind of just just flows into the future up down stable and soon after using it you just get a vibe for it. You know how it works and you can kind of be ahead of the diabetes roller coaster instead of you know hair back and screaming and always riding it dexcom.com Ford slash juicebox I can't I cannot I cannot tell you properly I don't think what a big, big big impact it's made on my daughter's health and mine. Before I go I want to remind you to check out touched by type one.org It's a wonderful organization doing things for people living with type one diabetes that are just so heartwarming, you have to see them yourself and you can at touched by type one.org also on their Facebook and Instagram pages Alright, now we'll get back to Bonnie I know I was the one that interrupt this episode. I'll tell you guys when it's appropriate why I've been getting a lot of calls. While I've been making the podcast lately but not right now. For now let's get back to Bonnie she's going to explain how they took care of this problem for her patient. It's legit amazing.

I'm really sorry Bonnie, I had take a phone call, which I apologize for. Okay, so we now understand completely like what this the impact of this is, and that you really don't have any recourse or you didn't you thought had any recourse as a physician, these people still need insulin, they're going to have these reactions like trying to, you know, treat what happens next isn't fixing the problem. It's just kind of quelling, you know, symptoms that as bad as they are, right. And so, when you contacted me, you were just looking to speak to Sasha's family, right?

Bonnie M. McCann-Crosby, MD 15:33
Yeah, just to kind of hear their experience and kind of different things that they had tried in the past and how things were going for them currently.

Scott Benner 15:44
And after speaking with them, what did anything strike you to try? Or where did you think you were left?

Bonnie M. McCann-Crosby, MD 15:50
Well, you know, her case is, is certainly very unique. And you know, in her case, they ended up with the the Daya port system, which required a lot of planning and time invested, because it is only available in Europe. And apparently, they had to fly this German surgeon over to Canada, and you know, he had to train them how to put this thing in, and then the upkeep and everything like that is is quite expensive for the ongoing supplies and the insulin. And, you know, it's it's definitely a lot and you know, you know, reaching out, I did reach out about diapers in the US, but that is, you know, very, very complicated and requires FDA approval, which of course, takes a lot of time, right. And so, just kind of thinking about other ways for these patients. In one, one thing came to mind, which is technically not FDA approved for people younger than 18. But is the inhaled insulin, a Frezza? And yeah, so that's kind of, you know, honestly, your podcast was kind of just opened my mind into thinking about different ways to treat patients with these insulin allergies. And, and that kind of led me down towards the Frezza pathway.

Scott Benner 17:19
When you thought that, did you then think I'm a genius, afterwards? Because that's what

Bonnie M. McCann-Crosby, MD 17:23
No, no, this was actually, you know, you know, these, these discussions are never made, you know, just with one with me, right? So it was kind of my whole, my whole team, were kind of talking about these situations, and what else could we try? And so it was a team.

Scott Benner 17:37
All right. Okay, Bonnie, everybody's hurt. Yes, man. Okay, everybody helped. I understand, like, yeah, fake credit from anybody. But I'm just saying, I would have been like, Oh, my God, I'm a genius. So to kind of, like, tease this out a little further to make sense of it. If if a person who's allergic to their injected insulin, gets it through this port, it magically doesn't, it doesn't bother them anymore, right? It becomes then the problem of the expense and the difficulty, right, and that there's a certain kind of insulin that you use with the port. That's not it's very expensive and not covered by insurance, etc. So right, right, right. But but the takeaway from that should be if you can bypass the subcutaneous delivery, somehow, they're not having a reaction. Right? So when you think a Frezza is, is the molecule sold, so different, that it doesn't make you think, Oh, God, what if we spray insulin in their throat? And they have a reaction in their throat?

Bonnie M. McCann-Crosby, MD 18:37
No, that's, that's a definite concern. And so, um, yeah, because it, you know, it is, it is human insulin, right? It's the same and it's just not being injected into subcutaneous tissue, obviously, it's inhaled, which is, you know, brings about its own concerns, which we can kind of get into, when we talk about how one would kind of initiate this in a patient with a concern for insulin allergy,

Scott Benner 19:01
I would imagine you find the flesh on them that is most likely inside of their mouth and spray it on it and see what happens. Is that what you did, yeah, so

Bonnie M. McCann-Crosby, MD 19:09
um, you know, in these cases, you would definitely want to get allergy and immunology Doctor involved, to be able to kind of help monitor for reactions. And so I think, you know, first would be to kind of try a little bit of a local area in the mouth and just kind of see like, how that goes. And then, when you're really going to do first dose, true inhalation you really need it monitored, right, in a clinic, with an allergist who can be prepared with, you know, epinephrine, and anything that is needed in case we have an anaphylactic reaction in the lungs, right like that. So that's, that's the big concern, obviously. So it needs to be done in a very carefully monitored situation.

Scott Benner 20:00
Were you there when it happened?

Bonnie M. McCann-Crosby, MD 20:02
I was there. Not in the, you know, not in the room. But, you know, I'm there in the clinic when when these things are done. So yes.

Scott Benner 20:12
What was the story? was the concern? All was it as great as what if we have to like, tube this person? Like couldn't have gotten that bad? Like it was at your expectation that it could have went anywhere from Hey, this could work? Yeah, we might have to assist them in breathing.

Bonnie M. McCann-Crosby, MD 20:27
Yeah, I mean, you have to, you have to plan for the worst, right? Like hope for the best plan for the worst in these cases, because you just you don't know what's gonna happen. And so, you know, and, again, has to be very closely monitored.

Scott Benner 20:40
You just described being married. I don't know if you're married or not. But oh, I am. Yeah. For the worst hope for the best. It also applies to raising children and buying a dog. So it really does. It applies to everything. So I'm like, I'm so I'm fascinated. So this patient, you had one in mind that you were going to try it with first, I imagine. Right? Okay, this person comes in. And what happens? I mean, you they have, I mean, do you have it? Is that how they like What's the word for how Yeah,

Bonnie M. McCann-Crosby, MD 21:11
it's inhaled? Yeah. I mean, it's like, like an asthma inhaler. So you know, you can kind of have a device, kind of, just breathe it in your mouth, right? Just inhale it. That's how it works

Scott Benner 21:23
for they took in some carbs. And then you were like, Alright, here we go.

Bonnie M. McCann-Crosby, MD 21:26
Yeah, that's how it how it's done. Wow.

Scott Benner 21:29
Like the almost like a last meal situation. would have been like, yeah, this goes upside down. I want to have something really good. So okay, I mean, like, what happened?

Bonnie M. McCann-Crosby, MD 21:45
I mean, you know, again, I can't I can't say specific details, of course, but, you know, overall, good response. And no emergencies occurred. So

Scott Benner 21:57
yeah. So they were able to inhale the phrase, is it a phrase or a phrase? It's a Frezza. And they did not have any like, but like pain, bumpy bumps, bubbling, anything that was happening on the on their skin with the other insulin just didn't know. Wow, that must have felt amazing. For them to you for I mean, I would imagine everybody's just running around thrilled. Yeah. Can you has this made a significant impact on this specific person's life?

Bonnie M. McCann-Crosby, MD 22:27
I mean, again, I can't really speak to

Scott Benner 22:30
tell me where was it a was it a improvement? Yes. I

Bonnie M. McCann-Crosby, MD 22:35
mean, overall, yes. Okay.

Scott Benner 22:36
Are there still issues? No, no. Wow, you were just being very careful to protect people's information. Okay. Excellent. So Wow. So you fixed it, Bonnie? And your friends, everybody who helped? I understand. Don't worry. Yeah, yeah. Wow. So then do you look back at other people, like you start going through records and finding other people this has happened to in the past? And like, what's your next feeling after you accomplish that?

Bonnie M. McCann-Crosby, MD 23:01
No, definitely. I mean, if there, you know, Are there cases that come up? We're gonna keep this kind of treatment in mind? Because, you know, I think it's a viable option. Now, of course, you know, this does not replace long acting, right, this is only short acting therapy here. So you have to make sure that, you know, these patients can be on a long acting, of course, so whether that be Lantus, Joseba, Basal, or like whatever, but you have to make sure that they can also tolerate a long acting that we don't have a reaction to, you know, obviously,

Scott Benner 23:35
in this very, in this specific situation that we're not being very specific about, could that person tolerate along I think insulin? Yes. So what do you think it is about the shorter acting insulin that they can't take? Do you think it's a preservative or something? They have you ever looked into what what they're allergic to?

Bonnie M. McCann-Crosby, MD 23:52
Yeah, I mean, it's possible it is a preservative and I and we haven't tested you know, specifically but it there's got to be something in in that short acting that that these these patients are obviously reacting to, but because maybe it's just something some reaction, you know, within the skin, but yeah.

Scott Benner 24:18
And it doesn't matter like like you said, a PG or Novolog, fiasco, whatever, you tried the same reaction. Wow, that's crazy. So but that thing doesn't exist in even in the modern Basal lecture Seba.

Bonnie M. McCann-Crosby, MD 24:37
You're not sure you know, everyone is there. Yeah. I mean, I think there's different ones that are there different preservatives and each one so I mean, I think you just you have to try each one to see which one they're not reacting to. So, you know, we were able to find one long acting that did work without any issues.

Scott Benner 24:56
Would you share that or can you know, okay, Well, if I get the person on it, I'm sure they'll be able to tell me. I'm sure they will. That's amazing. Oh, wow. Like seriously? Like, is this one of those like, this is what I became a doctor for moments. I like to think so. Yeah, no kidding. I mean, that's just such a big shift for someone like me really, like, just boil it down to it's, it's, oh my gosh, you have diabetes, you're gonna have to take insulin every day for the rest of your life ups. You're allergic to insulin, sorry. Like, where do you like there's nowhere to go? Like, so there's people are torturing, they're torturing themselves with this insulin because it's their only option. How many people do you think you've seen with this issue? Well, first of all, how long you've been practicing? And then how long do you think you've seen? How many people do you think you've seen?

Bonnie M. McCann-Crosby, MD 25:44
So I've been practicing for six and a half years now. I mean, this is extremely rare. You don't? This is not this is not common. I mean, this is like a I mean, it's it's like you're lucky if you see a case in your lifetime, probably.

Scott Benner 26:02
It's not or unlucky, I guess I should say, it's not even a thing like like, since then when you when you meet a person who's newly diagnosed, you don't think in the back of your mind? And I hope you're not allergic to it just right.

Bonnie M. McCann-Crosby, MD 26:14
It's just it's not really, it's just not these are not common things, of course.

Scott Benner 26:19
Okay. Wow. And so do you? Do you know of a handful of patients like this? Or? Not even? Not even? So are you on here today hoping that people will hear about this? And in case it's they've been touched by this problem?

Bonnie M. McCann-Crosby, MD 26:35
Yeah, I mean, I think the big thing is that, you know, this is an option, right? And, and if we are stuck in a position where we can't really get the diapers, or that's not really a feasible option, then this may be an alternative. That is a lot cheaper. And, you know, potentially, you know, life saving, honestly, it's less

Scott Benner 26:56
and less, just less of an encumbrance. Which right, you don't need an extra thing when you like, you already have diabetes, you don't need more stuff, you know, right. I, so I have to ask you, because that's just how it occurs to me. I mean, I remember when I first came on the market, and people said, Are you gonna try this with your daughter? And I said, I'm not real comfortable with her inhaling something and putting it into her lungs? And I don't know anything about it. I want to be clear. I couldn't, you know, and I'm not I'm not making a judgment. I'm not saying that. There's any studies, I'm just saying that from a knee jerk reaction as a parent, I was like, No, thanks. But do you prescribe it? Generally speaking, in your practice? No, you don't

Bonnie M. McCann-Crosby, MD 27:36
know. Well, and I think, you know, to kind of explain, there are some limitations with it, right. So it only comes in certain unit cartridges, there's a four unit, an eight unit and a 12 unit cartridge. So in littles, you know, who are on I don't know, half a unit with meals, or you're really trying to get precise with the dosing, you can't like, you have to be on a high enough dose that you're on able to take at least four as a minimum, right. And the other issue is that it does not last as long, as you know, say homolog, Novolog. And so they may need in between meals, potentially a correction dose to, you know, to bring down potentially a high postprandial and the dosing, it is different, slightly different. So usually, when you go from human log, or Novolog are one of the other injectables to a Frezza, you're going to be on 20% Higher, potentially dosing on a Frezza than you were on short acting. So it does have some limitations. And then, of course, it's not really, it's not studied in kids. So it's not FDA approved in kids less than 18. So you do have to get, you know, special approval, if you do have a patient with an insulin allergy. And then the other thing to keep in mind is just, you know, you can't use it in a person that has an underlying lung issues such as asthma, right? That could be a bad thing, right? So they have to have healthy lungs, and then you do have to monitor lung function over time to make sure that it doesn't change once you're doing an inhaled drug like this for a period of time. So that's recommendations to get, you know, lung function studies, when you're on this medication.

Scott Benner 29:36
Gotcha. Did you do one initially, so you had a baseline? Cannot say, oh, but would be a good idea, right? Yes. Yeah, just say, I gotcha. I will tell you that I know of a handful of adults who listen to the podcast who use it and really like it. So I'm not I'm not unaware of it. And I just, I don't know, it seems like did you have well, I guess you didn't have that polling the side of you because this was it right. You were down? Yeah, this was the option. Yeah. Wow. It's just amazing that it worked.

Bonnie M. McCann-Crosby, MD 30:08
Yes, absolutely. Yeah.

Scott Benner 30:09
I mean, just it's i It's miraculous, you know what I mean, there's, I think it's because I have the experience of having talked to Sasha for an hour and listening, you know, from like, a young girl, and she, you know, explaining how it's impacted her life. And I follow her on. I think I follow her on social media now. And just to see kind of the lightness that exists in her life now, like, she acts, she's acting her age, and she looks happy and everything. And it's just a really kind of amazing idea. So are you worried about it? lung function wise? Like, take up? Take out for a second? This is what had to be done? Are you concerned?

Bonnie M. McCann-Crosby, MD 30:48
No, I mean, I think as long as you're monitoring, you know, if any changes come up there, I mean, we're gonna you know, you'd have to kind of figure out what's, what's the next plan, but I'm in a, you know, people with healthy lungs going forward? I think. I'm not I'm not super concerned.

Scott Benner 31:08
Hey, I have a question. I didn't ask. Not that you would want to do this. But you try regular an MPH. When you are going through all the different?

Bonnie M. McCann-Crosby, MD 31:16
I mean, yeah, you have I mean, if you're gonna go to a Frezza, you have to try the other ones. Everything you little

Scott Benner 31:20
You tried. Okay, I just went, Yeah, did everything. Yeah. Wow. Oh, my God, I am not asking you anything. I should be asking you because I'm a little overwhelmed how excited I am about this. I didn't expect I'd be so elated by the conversation. But is there anything I'm not asking that you think should be added here?

Bonnie M. McCann-Crosby, MD 31:40
No. I mean, I think I think it's really important, especially, you know, if if someone comes in and does have an allergy, a true allergy, I mean, you have to think about this as a viable option. And I, and I'm glad that you know, it is right, in anything that can be life changing and, and help people not be in pain all the time. Like, this is huge. So

Scott Benner 32:06
So is it. Is it fair to say, Bonnie, that if if somehow magically, five people walk into your office today, they all had that level of allergic reaction to injected insulin? You would say, Well, let's try this. That seems like the viable and maybe only next step?

Bonnie M. McCann-Crosby, MD 32:22
Yeah. I mean, I think it is, I think it is, I mean, short of, you know, going to Germany and getting a diet for right now. I mean, I think that's probably the best best option. If you've exhausted all the other, you know, short acting insulins, I mean, this is a this is definitely an option. But of course, you know, it does, like I said, require getting a prior authorization just in kids. Right. But, but yeah, definitely

Scott Benner 32:50
remind me, and I went over it real quickly at the beginning, but part of the problem with the port was that the company might not be making it anymore, or is that correct? And then, and they insulin was like, literally like 14,000 in cash a year.

Bonnie M. McCann-Crosby, MD 33:02
I don't remember how much it was, but it was, it was very expensive. And even, you know, the, the maintenance of the diapers itself, like all the supplies that you need, and things have to be replaced every year, and it is costly.

Scott Benner 33:15
What is the what is the port do? How does it? Is it like a metal spike? Oh, you know,

Bonnie M. McCann-Crosby, MD 33:22
I don't know exactly what it I don't know, it kind of it looks, it's hard to hard to describe, you can look at the website and see like in a better picture than probably what I can describe. But it basically, you have this little port that goes into the peritoneal cavity, like in your, you know, in your abdomen, and, and then you've got a connection that connects from that port on the inside, to the outside where you've got an insulin pump running and, and pumping insulin. And it's an older version of an insulin pump. I can't honestly cannot remember the name of the company that makes it but they don't make that pump anymore. So but but that's the one that connects with the diet board.

Scott Benner 34:10
It's a ton of hurdles. And I guess if there's, I mean, if you've only seen one in your six year career, and I've had people reach out to me, I have not having a lot of luck getting them scheduled on the show for some reason. But there's like a handful of people who all know each other who have this happening with their kids. And I think they heard episode 504. And then they reached out I have been trying to book them, but I'm not having a ton of success. But I mean, even at that I reach a fair amount of people and that I only heard back from four people was is pretty telling, you know, oh, yeah, yeah, yeah. So companies aren't in the business of I mean, I know it sounds harsh, but companies aren't in the business of making things that four people can use.

Bonnie M. McCann-Crosby, MD 34:50
You know, right. Right. It's

Scott Benner 34:51
true becomes a comes in an issue. Can I ask you a couple of other questions before I let you Yeah, cool. Absolutely. How do you handle I like this You're I was looking at you online. It's not creepy at all. It was just to get ready for this. Do you see yourself as a person who treats thyroid disorders in and out of the box? Way? Are you? Are you very by the book?

Bonnie M. McCann-Crosby, MD 35:14
I mean, I think we have obviously, like evidence based guidelines that we follow, right? And you know, sometimes you, you know, every case is unique, right? So if a patient has a specific need, you may have to kind of think outside the box, potentially, I would say that, in general, I follow the the guidelines, and if there's something that is an outlier, then you have to kind of alter and kind of figure out what's best for that patient.

Scott Benner 35:40
So like, if I came in, and I was like, Hey, here's my nine year old, we'll call him Jimmy, and Jimmy's tired all the time and can't pick his head up off the floor. He's like a puddle. But it's TSH is two and a half, you give you give him a thyroid replacement hormone?

Bonnie M. McCann-Crosby, MD 35:54
Probably not.

Scott Benner 35:55
Okay, what's the number you're looking for?

Bonnie M. McCann-Crosby, MD 35:58
So, I mean, in general, we, you know, my practice is if the TSH is above 10, or the free T four is below the normal reference range, those are my now everybody's different. So right, like if I've started a little bit lower TSH levels, but those are the kind of the general guidelines

Scott Benner 36:19
when that happens. And I don't I'm not setting this up to be an indictment of you. I'm trying to understand the bigger picture if the if the practice or the hospital if that's the the treating rule, then did the physicians not have a lot of autonomy?

Bonnie M. McCann-Crosby, MD 36:32
Oh, no, they

Scott Benner 36:33
do. They do. Thank you. Yeah. All right. I just I was wondering, I, we have a really popular episode with a with a fibroid doctor, who, you know, talks about treating the symptoms, not the number. And, and then a lot of people run into trouble when they go back to their doctors, and they're like, Hey, this is my kid, His hair's falling out, and he can't stand up and be like, oh, is TSH is only five. And then eventually, they get to somebody who gives them the, the hormone and the kid pops back up like a fresh flower afterwards. So I was just, I was just wanting, I was looking for, like a real like, like, outside of the I know, that's not what we're talking about. I just wanted to like have like a top line reaction from you so that people could understand what's happening when they go to the to the doctor?

Bonnie M. McCann-Crosby, MD 37:19
Yeah, I mean, I think you've got guidelines for a reason. Right? But then, you know, every case is different, right? It's, I think you have to look at it on a case by case basis, and then, you know, come up with an individualized treatment plan. So I mean, you know, I would say those are my usual guiding numbers. Right. But, you know, there have been times where things you start at a slightly lower TSH level, you know, so, you know, you just have to kind of take each case individually.

Scott Benner 37:45
Can I ask you what made you want to be an endocrinologist? Oh,

Bonnie M. McCann-Crosby, MD 37:48
man, yeah. Um, I was a biochemistry major, in undergrad, and endocrine, to me, there's a lot of biochemistry involved. And there's a lot of, I love the feedback loops. And, you know, from the hormones, and I loved also just the continuity. You know, you're seeing patients from sometimes, you know, itty bitty all the way through graduating high school, and I loved being a part of their lives for that long, and the subject matter was just super interesting to me. And I liked the fact that, you know, if you were missing a hormone, I could give it back to you. Right, I could treat it and I felt like it was actually making a difference.

Scott Benner 38:32
That's excellent. So no, there's no type one in the family or anything like that. You just know, you're just a science based person to decide. Yeah, that's, that's really cool. Okay, I have a question that maybe you can uniquely answer. Sure. You're in your position, and you're helping a person, and they get up the nerve to say to you, hey, I don't know what happens. They get this like Rocky in a one scene, you go, this is amazing. You're doing great. And they say, I listened to a podcast. What's your first reaction the first time you hear that?

Bonnie M. McCann-Crosby, MD 39:04
I mean, I'm pretty open minded when it comes to that. So I'd say Okay, tell me what podcast you're listening to. And, you know, so I would be interested to know, like, what they learned, and maybe I can learn something

Scott Benner 39:18
that is very progressive. You Thank you. I just I would assume that the I mean, I'm putting myself in my shoes. I know, this is crazy. But I would if I was you. I'd be like, Oh my God, these people on the internet. And so, but I mean, so it happens once you're interested. How many times do you think somebody has brought it up to you

Bonnie M. McCann-Crosby, MD 39:41
has brought up what sorry?

Scott Benner 39:43
No, no, I'm so sorry. Like, how many different families do you think have said, I listened to this podcast?

Bonnie M. McCann-Crosby, MD 39:48
Your podcast? Yeah. Gosh, I want to say I mean, a handful, probably. Four or five? Yeah, I mean, it's definitely I hear about it on a regular basis.

Scott Benner 40:02
That's so cool. Do you have any questions? For me? Do you have like, do you want to know anything? Like why? Like you? I don't know. Maybe you might be like, No, Scott, I'm done. Now I've talked about the thing, we're finished. But no, no thing that like springs to mind. Like,

Bonnie M. McCann-Crosby, MD 40:19
No, I'm just, I'm super, you know, I hear really good things about about your podcasts. And I'm really glad that you're doing what you're doing. And I think, you know, being an advocate for families, for for kiddos with type one, and you know, I think it's great. I don't know that I didn't prepare any specific questions. So,

Scott Benner 40:42
so my thought I'm sorry, I have caught you off guard. It's, uh, but my my thought like, I'm trying to imagine you in that situation where somebody comes in, like literally says, like, I mean, I get my correspondence is pretty consistent. It happens constantly, all day long. So I've gotten three today that almost if you if you read them quickly, you think they were the same note, you know, my son's nine years old. My endo says they've only ever had three people with an N A one C and the fives, it's the stable. You know, I told him about the podcast, blah, blah, blah. Like, I just like, I would wonder like, what is the person saying, dude, like, like, what is like they're listening to this like, like, voice come through their earphones. They're coming back to me with a five, five a one. See the kids eaten whatever he wants. There's not a bunch of lows. Like what? Like, do you wonder if we're like doing like, you know, like, satanic chants on the podcast or stuff like, like the like, what is it? You don't mean? Like, what? What does that make you feel? Like? Like, even now? Like, how does that? Like,

Bonnie M. McCann-Crosby, MD 41:49
I definitely am not concerned that you're

Scott Benner 41:53
the most ridiculous thing I can think of? I'm sorry.

Bonnie M. McCann-Crosby, MD 41:56
No, I mean, I guess Yeah. I mean, what, um, and I honestly, I, you know, I have only listened to one of your podcasts. So I mean, I'm, I am actually kind of curious. Now. You know, what, what kind of things do you tell families with type one,

Scott Benner 42:13
I feel like I've bullied you into this body, but I'm doing it anyway. Okay, let's do it. Let's go there. So, to me, it's a it's, it's very simple and very complex at the same time. So the simple part is this. You have to get your Basal right first, then you have to learn how to Pre-Bolus insulin. And then you have to learn the different impacts of foods and be flexible about their dosing. And then after that, that's it. It's just flexibility. It's not staring at high blood sugar's it's, you know, it's just then that gets into the bigger thing, like the simplicity is right there. It's, it's Basal Pre-Bolus glycemic load index. And, and then it's bigger picture stuff. So that you begin to have these moments where things happen, and you can react so quickly to them, because you just know, and I think that's why a podcast format works. Because you just keep listening, and things just get in your head. And then suddenly, instead of like, Oh, God, I don't know what to do. You just do this thing. You take this step without almost without even thinking about it. And I think that it's, I've seen, the feedback that I've gotten is so consistent, that I would tell you that most of the people who've been listening to this show for more than six months, are probably with very little effort have a n a one C in the sixes and the ones that really like kind of pay a little extra attention or in the fives, no diet restrictions, no problem. And it's awesome. Yeah, and it really is just so anyway, I realized at one point that we were having these big conversations, and you'd have to listen to this hour to pull out like three nuggets which, which actually works, it's a great way for people to, like you don't mean like when you sit people down you go, here's 20 bullet points, and we're gonna learn them all. Like, that's nobody does that. Right? Right. So they absorb all these ideas. But eventually, I realized that like, there's a whole system here. So I contacted a friend of mine, who is I mean, she's had diabetes for well over 30 years, she's a CTE, which I know they don't call themselves CDs anymore. There's something else. And she she came on and helped me do specific drill down episodes on ideas. So now there's like this 20 episode series called diabetes pro tip. It kind of lives inside of the podcast. I would tell you, you listen to that. You're a one season the fives. Nice. That's it. And it's nice, absolutely free. I would never charge money for it. So that's awesome ads on the podcast, but I would never ask anybody to I just don't think the learning how to use insulin should cost you money. You don't I mean, so. Yeah. I love that. Yeah. i That to me, like that's the it's the whole thing. It's giving people it's giving people kind of, I don't know, agency over themselves right now. The the feeling that they can make a change instead of waiting three months, and then putting you in the unfair position of going here, look at all these graphs, what do you think is wrong? Like? Right, that kind of thing?

Bonnie M. McCann-Crosby, MD 45:13
Right. And I think I mean, that's that's the, you know, I love what you said about giving agency. I mean, I think we want to empower our families, our patients, and I think, you know, we want them to be successful. And I hate for them to sorry. I don't know I, I hate you know, this idea when you come in to see your endo and and you get kind of beat down for your agency. It's just a number, right? Like, but I love that you're empowering them to be successful. Right? And it's not as complex as it seems to be.

Scott Benner 45:51
Yeah, it's, it's actually, once you see the big picture, it's kind of like the I know, we're so I'm old at this point. But it's like The Matrix, like it's the spot. It's the point where you're like, oh, I can just stop these bullets in the air. Like, none of this is real, you know, you have that vibe that I think you come into diabetes. And the game is moving so much more quickly than you can follow it. You look like a high school quarterback in a professional football game. Right, right. And then all of a sudden, just like they talk about what some of the greats like the game slows down, and you can suddenly see the whole field and your decision making is just ahead of the game. Right. And I just think so much about I think that being ahead of diabetes is important. Like I think that playing from behind or chasing blood sugars is a fool's errand, like you need to write make a decision that impacts something so that at least you know that what happened next, you did. In fact, instead of having that feeling of like, I have no idea what's happening here. Like, like, and you get lost,

Bonnie M. McCann-Crosby, MD 46:54
right. And I mean, so often, you know, I always, you know, I feel like, you know, people are chasing their tails with blood sugars and all this, but no, and I think if you're proactive about it, I mean, that just sets you up for success. Absolutely. Yeah.

Scott Benner 47:08
No, it really is a, it. It's not I don't think diabetes ever is easy. No, I think you can get so good at it that it could feel easy. And I think that's an important distinction, like it is a really difficult thing. But you know, just, sometimes you have to look at it very micro. And sometimes you have to look at it macro. And a lot of times people get it flip flopped. I'll tell you one thing that I see super common is that people will have, I don't know, say they need a Basal rate of a unit an hour, but their doctor has them at point six. So then they make these aggressive Bolus is at meals because these meals are always spiking. Right? They don't Pre-Bolus Because nobody tells them to so they're there. They put in too much insulin for the meal at the wrong time. They spike way up and an hour and a half or two hours later, they crash down they get low and they have to correct it. Correct. Then they bring a coaster. Yeah. And you bring that graph to your doctor, your CD or whomever and you say, Look, I'm getting low after meals, and they always take away the Basal instead of looking and saying well, I bet you like look overnight here. Your blood sugar's one. It's pretty stable overnight. It's yeah, 170. If we made your Basal higher, I wonder if we could find stability at 90. And if great if we did that, I wonder how much easier it would be to Bolus for the Beals, right? And then we would balance the meal insulin better not find a low later. But somehow just seeing low to them means take away insulin. And it's backwards. It's sometimes backwards. But

Bonnie M. McCann-Crosby, MD 48:38
I agree. I mean, I think if you don't know. And that's why you like for me, I have to know like, what is the pattern? Like? When are you dosing? What are you? I mean, it's everything right? But if you don't understand the pattern, you're just looking at numbers. Yeah, it's up to you. You may say, okay, oh my gosh, the mealtime coverage is too much and back off, but that's not the right answer. So, no, you're absolutely right. You have to know what is the backstory, right? What's happening.

Scott Benner 49:07
There's a tug of war that happens in meals between the carbs and the insulin. And the biggest mistake I think we let people make is we we yell go when we when we push the button, you know, on the on the on the insulin at the same time we start eating which was extensively gives the carbs a head start. Oh, yeah. And then everything's just a mess, right? It doesn't matter if you use the right amount of insulin, if you use it at the wrong time. It's not going to work.

Bonnie M. McCann-Crosby, MD 49:32
That's 100% True. And I you know, Pre-Bolus Singh, is huge. And you know, it's something that I definitely stress in my practice is realist Pre-Bolus and they come back and they start doing it and you see the difference on the Dexcom and you're like, oh, wow, look, you're not spiking after meals anymore. It's amazing. It makes a huge difference.

Scott Benner 49:53
That's it's such a nice feeling to see people when they when they kind of crest that hill and they get it all of a sudden had a an episode go up actually, I had an episode go up today from a lady from Texas. Her episode is called crazy mom from Texas, which is just a name she gave herself. So I'm in the clear. But she's a person who reached out to me through social media and I ended up helping her kind of privately like just texting with her once in a while and asking her questions. That's about a year ago now. So, six months after I spoke to her, we recorded the episode and now six months later, the episodes up. And she texted me today. And she's like, look at my graph. And she sent me a 24 hour graph that's never below 80 or above 130. Amazing. She's like you, like, taught me how to do all this? And like, oh, my gosh, your text messages? Wow. So I just think it's, I think it's infinitely doable. And I I hope that the people that people count on have the nerve to tell them about the tools that they need instead of, you know, and and don't chastise them when they figure something out, because that is a big problem. People figure out on their own, they go back to their doctor, their doctor is like, you can't do that. Like, dude, it works look great. You know, they're like, oh, you can't do that. Like, I can't do like, and then they take their pumps from they change all their settings, and they walk out in the parking lot and put them all back again. Like yeah, yeah. What are we doing?

Bonnie M. McCann-Crosby, MD 51:16
Right? No, I hear you. I hear you.

Scott Benner 51:18
Where are you from originally? Because you're not from Texas originally. Right?

Bonnie M. McCann-Crosby, MD 51:22
You know that you notice that? No, I'm from Michigan originally. Yeah,

Scott Benner 51:25
you have like that upper midwest thing. But you you've you've used like one or two colloquialisms that told me you've been in Texas for a little bit. Really? Well. I

Bonnie M. McCann-Crosby, MD 51:35
have been here since I've been here since I was 12. And that was a long time ago. So yeah,

Scott Benner 51:39
you felt real mix like your your your accents. Cool. So that's it, Bonnie, we did it. Awesome. There's nothing I didn't forget to ask you are that you didn't forget to say then you can go back to your life.

Bonnie M. McCann-Crosby, MD 51:52
I think we're good.

Scott Benner 51:59
I want to thank Bonnie for coming on and sharing all of this. I also want to thank touched by type one for sponsoring the episode and you know what else Dexcom are also sponsors and they deserve a thank you as well. You can head over to dexcom.com forward slash juice box to find out more about the Dexcom G six continuous glucose monitor and get started today and learn more about touched by type one on their website touched by type one.org. They're also right there on your Instagram and Facebook feeds. Check them out, give him a follow. I want to thank you all for listening and let you know that I'll be back very soon with another episode of The Juicebox Podcast

#577 After Dark: 50 Years

Cindy has had type 1 diabetes for over 50 years.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 577 of the Juicebox Podcast.

Well, today's episode is with Cindy, and she's had type one diabetes for 50 years. Now, this one's an after dark but interesting story. I put the edit on this one, maybe a month ago. And at this moment as I'm putting on the ads, I don't remember why I made it an after dark. I just have a voice note at the end of this to myself that says, Make the length of sentence. How do I forget how I put it something about the episode title is the length of Cindy's time with type one. And this is an afterdark that's it, and I don't remember why. So we're gonna find out together. I'll listen when it goes up to while you and I are listening. Let's both 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. are becoming bold with insulin. Have you filled out the T one D exchange survey? I'll ask again T one D exchange.org. Forward slash juicebox US residents please. Alright, here we go. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored by the Contour Next One blood glucose meter. Learn more contour next one.com forward slash juicebox.

Cindy 1:53
My name is Cindy and live in Washington DC. Everybody asked you at happy hours in Washington. What do you do? That's like the first question. So probably doesn't really apply to the podcast. But I'm the managing editor for scholarly publications. And I have been type one for many, many, many, many, many years.

Scott Benner 2:12
Do you mean that when people find out you live in DC, they imagine you're involved in government or lobbying or something like that.

Cindy 2:19
It's a DC thing. Like anywhere you go. Hi, I'm Cindy. What do you do? It's a DC thing. It's all about work. This town is work, work, work, work work.

Scott Benner 2:29
You think it's Hi, I'm Cindy. And then the person wants to know how they can how you can help them in their career. Exactly. Gotcha. Okay. Can you be valuable to me Sunday should be the next statement. Not what do you do?

Cindy 2:43
Probably not know, I'm sorry, Scott. I don't think that's gonna happen. You

Scott Benner 2:48
don't think it'll work for me? It's funny.

Cindy 2:51
I mean, that unless you want to start editing or writing or you do plenty of editing, and I'm sure,

Scott Benner 2:56
I have to tell you, I'm a terrible writer. And in that I just didn't. I paid no attention in school. And then I wrote a book, which is the oddest thing. And as I was writing, there were just times where I just couldn't, I'm like, is that a coma? No. You know, like, I just I'm, structurally, I'm terrible. I got a lot of nice feedback about the book and the way it flowed and how it read, but I didn't know the first thing about what I was doing. So

Cindy 3:30
I actually have your book. Do you really? Yeah.

Scott Benner 3:33
Thank you. You know, does it need to be re edited? Is that what you're thinking? No, I

Cindy 3:39
think it's okay.

Scott Benner 3:41
Thank you. So, how old are you now and how old were you when you were diagnosed?

Cindy 3:46
Oh my goodness. I'm 59 and I was nine when I was diagnosed.

Scott Benner 3:51
Wow. Did you get like one of those metals, the lily metals.

Cindy 3:55
You know, my family's kind of flaking out on me. For the Johnsons metal you have to since obviously, I don't have any records of when I was diagnosed, you have to have family members write letters and so I drafted letters for my family to just fill in the blanks and sign nobody did it. Man So nificant other really wants me to get the metal because he's really an all about recognition. He's very big Washingtonian that way. And so he's like, alright, the letters for you. I'm like, No, I've got to live I'll sign them like no. City. What

Scott Benner 4:29
are you touching? Oh,

Cindy 4:31
sorry, my palm my bracelet is okay. I use my hands Okay, no,

Scott Benner 4:37
no, I listen, I talk with my hands. When I'm not it's odd when I do the podcast I do a little bit in person. I do it a lot. And I think I've stopped myself because I know I bumped the microphone and cables and things like that. But that's that was just so funny because people won't understand that right before we started recording. We set you all up so that you wouldn't touch anything that you I can hear you getting excited and tell the story I was like, did she find something to touch?

Cindy 5:03
It's my it's my dog tags on my wrist bumping against my punk. It's okay, that just yell it's. So my arms crossed. Now let's see if that works.

Scott Benner 5:13
You'd be sitting on your hands by the time we're done. So I, so that's interesting. I didn't know we'd be talking about this right away. But so you understood that family members, probably, these weren't the people who you could just say, hey, I need you to write a letter. So you said, look, here's a letter explaining my diabetes, can you sign it and mail it?

Cindy 5:32
Again, no response? I don't know why, I don't know. I mean, maybe things were going on in their lives that I was really pretty disappointed was like, Oh, come on you guys. Because you need somebody to say this is what was happening. And I did all the Googling, like, who was president and just so you have to sort of be able to account for current events at the time and the tests that they knew you when you were diagnosed, and I made pursued again, my mom's 95 Though now, so I'm not sure she's really up for it.

Scott Benner 6:03
Gotcha. But if you need me, I can sign your mom's name and mail it for you. Okay, well,

Cindy 6:07
I think about somebody I mean, he was like, I'll, I'll sign it for you. Authenticity,

Scott Benner 6:15
I'd be happy to sign your mom's name is what I'm saying. So you just send it over. It's how I got through middle school. With tests, I found a lovely girl named Karen, who, I just decided she would be my mom. And so I just had her started. This is very devious, but I pre planned knowing that I was not going to do well in school, and that they would make you get these tests signed, if they didn't go well. So instead of ever having my mom sign one of them, I just went to this girl named Karen. And I was like, Karen, I'm gonna need you to be my mom throughout school. So four years, Karen was my mother. You got to think ahead, if you know you're gonna mess up is that that's a that girl did it. She was so nice about it. I think it was frustrating at some points, because I really didn't do well.

Unknown Speaker 7:02
Thank you.

Scott Benner 7:03
I don't think so. She was so proud. I like she was definitely one of the girls that as I think back, I would have been nervous to talk to I and so I just was, you know, it's like, Hey, can you sign this? Eventually, a girl named Julie also took it up when Karen moved on. So I had to go to different people helping me. Okay, so tell me a little more about I mean, how far back can I don't just doesn't, it's not pejorative? I'm just how far back can you remember?

Cindy 7:31
Remember when I was diagnosed yet?

Scott Benner 7:33
Because I'm 50. And I don't know anything about the beginning of my life.

Cindy 7:39
I think my life started when I became diabetic. That's one of the first things I remember.

Scott Benner 7:44
really well, and how much of that can you put together for me here like, when

Cindy 7:49
it's pretty good age, right? I was nine and I know other people can remember before that age, but I don't know if it was because it was such a big shift. Because it's so heartbreaking because of how my family dealt with it. That feels like my when my life really started. I don't remember a lot going on before then. It's a weird dynamic. I'm not quite sure what that's about.

Scott Benner 8:13
Well, so 50 years ago, management, what did it mean? Like you're a nine year old and suddenly this has been thrust on you. What what is it that's been thrust on you?

Cindy 8:23
The thing that really stood out for me is that you can never have sugar candy again.

Scott Benner 8:30
That's what they told you just no sugar, no candy. What did you eat growing and you'll

Cindy 8:34
go blind if you do. I mean, it was really very scary in my bath. So my sister said, Does this right? Is this what I heard or am I just, you know, making it up? And she said, No, they pretty much told us no sweets. And I was heartbroken because my father used to bring me candy all the time. He'd come home and he'd bring me candy, candy, candy, candy, candy. And so to hear that I was never gonna get eat candy again. Like it was not cool. I was in the holidays. I think we're kind of ruined for me because the holidays have so much food and candy associated with a minimum of my first Easter basket. This is going to be a woe is me story. And I thought for sure my mom would put a chocolate bunny or something in there. No, she put tried it sugarless gum.

Scott Benner 9:26
That's not the story. No,

Cindy 9:28
I was like really a number being really disappointed. I tried not to show it because she was doing what she was supposed to be doing it.

Scott Benner 9:38
Yeah. Well, so it wasn't hyperbole either. Right? They were, that might have been true. On some level at that point. Like you they needed to cut carbs out of your life. Or you were going to suffer some long term effects because that's just was that just the honesty of the treatment at that time?

Cindy 9:58
I think it was um, Because I don't think they really knew how to manage it. I mean, remember this was on one shot a day. Yeah. In the morning was very old beef, pork and sling, it was similar day and limp day with the names of the insulin wasn't multiple daily injections, certainly no pumps didn't know what your blood sugar was have been testing your urine. And we know that that's not very helpful or effective. So yeah, I think at the time that that's just how management was, you just didn't think to take more insulin for eating more carbohydrates. In fact, it was very hard for me to get my head around adjusting my insulin to a sliding scale. When I got older, that was a really new concept for me, I was used to taking this 138 Was 38 LMT and eight units of semimonthly for years and years and years and years and years and years and years. And that's all I took,

Scott Benner 10:51
just get up in the morning and shoot that and then try to eat a certain amount of carbs at certain times a day, or was it?

Cindy 10:58
Well, for a while we tried that. But that didn't last very long. Once I got a little older, I just saved anything. But yeah, we tried that. And it was the exchange diet, which I'm sure you've heard of. So it was different than carbs. It was counting exchanges one bread one through one vegetable. One milk, so I think of it more like almost like counting calories instead of cars, but I guess it was cars, but that's not what we called it in.

Scott Benner 11:25
Because that doesn't take into account any of the glycemic load of the foods that you're having.

Cindy 11:30
No, not at all, which I think is is part of why they really made the hard and fast rule. No sweets, no candy. No. I mean, they had some allowances for your birthday. You could have angel food cake.

Scott Benner 11:45
You're a great sponge cake for old ladies for my birthday. Great.

Cindy 11:48
Exactly. And I hate angel food cake. To this day. I just

Scott Benner 11:53
I bet you do. I remember my father wouldn't eat chicken. And one day I just asked why? Because it was odd. We'd have chicken for a meal and my mom would make my dad a piece of liver every time. And it turned out that his dad had a job that on Fridays, if you had a good week of work, they'd send you home with a live chicken. And that was part of the like a bonus for working there. So my dad got chicken constantly as a kid and then couldn't stomach as an adult.

Cindy 12:22
Couldn't see. Yeah.

Scott Benner 12:23
So are you seeing that? I want to make sure I definitely understand that all the way back in the beginning. You weren't even using regular an MPH you were using something even more ancient ancient they I was looking for the word. Thank you then that.

Cindy 12:38
Yeah, no, it was called similar thing. Monday was beef pork. I'm sure it wasn't very pure. Fact I used to get a fair number of skin reactions from it because I just think it wasn't very pure insulin. So yeah, that was a long time ago because it was 1971.

Scott Benner 12:55
That was the year I was born Sunday. Yeah, now. Listen, it's making me feel old. How do you I mean, what do you you can't just do the woe is me here, right that far behind you. But that's crazy, like and like to listen to now in 2021. And so how long did you do those those first insulins again?

Cindy 13:15
What's a long time well into my teens? I don't know, when I went on to regular an MPH might not even have been until college. I didn't have the best of care. Well, part of is I didn't have the best of care. But I also didn't take very good care of myself. So I may have not gone on to mph, right? Maybe in high school. But then they wanted me to take two shots a day. And I was like, Oh no, this, this now I don't want to do this. And eventually I did. And that was quite a while before. Maybe I was in college, they wanted me to do even more shots. And now. Because really, even though it was terrible control, one shot a day was pretty simple. You took your insulin and that was it.

Scott Benner 14:02
Right? So you weren't really thinking about outcomes. You were thinking about livability?

Cindy 14:07
Yeah, only when, at that time, I just figured I would die and I want to see and I would go blind and I just sort of took that like, okay, I guess that's gonna be how it is. I mean, I never thought I'd make it to 50 years. That's not it'd be long gone or I'd be sick. So yeah, I just started like, Well, yeah, I guess I'll go blind. I guess I'll mean, as I got a little older, I got a better grip on that. It's like no, no, you don't have to you can make better decisions. But when I was younger, and I didn't have much control over what was going on around me it just sort of, well, okay. When you

Scott Benner 14:45
said a minute ago that you didn't do a very good job. What does that mean to you?

Cindy 14:51
Well, compared to what I do now, um, I eat pretty well and obviously we test our blood sugar and I'm on a pump and I have a CGM. But then you didn't know what your blood sugar was. And when I became a teenager, I just ate and ate and ate and ate all the bad things. Nothing that was wasn't like vegetables and broccoli. It was like pizza and sugared sodas, and I will said pop up for a long time. In Colorado, you save pop instead of soda. But so I didn't take very good care of myself in terms of my diet. I always took my insulin. I never was someone who didn't take my insulin, but I didn't abide by my diet very well when I became a teenager.

Scott Benner 15:37
And so is it fair to say that you were probably only abiding that diet in the beginning? Because you're young enough to be controlled by the fear?

Cindy 15:49
Yeah, I think so. Plus, you know, when you're nine other people are generally feeding you. Um, and that lasted for a little while my family, it's interesting, my family, not getting told my family, but they didn't deal with me becoming diabetic very well. And they tried initially, and thank goodness or my sister who's 10 years older than me, she she was only 19 At the time, but she really did make a good concerted effort to watch my diet to teach me how to take my insulin. She was really great. And thank God I, I had her but my mom. Initially she was pretty engaged. But then she sort of checked out. And actually my father never learned anything about my diabetes, you'd always just say, Oh, he was too stupid to understand it.

Scott Benner 16:38
He just didn't want to be involved. Right? How many how many kids? Did your parents have?

Cindy 16:42
Three, and I'm the baby. Wow, Cindy, I'm

Scott Benner 16:45
gonna do something I don't normally do. But I need to take a break for one second, and I apologize but I will be back in two minutes. Okay. I'm so sorry. I'll explain why as soon as I get back.

G voc hypo pan has no visible needle, and is the first premixed auto injector of glucagon for very low blood sugar and adults and kids with diabetes ages two and above. Not only is G voc hypo pen simple to administer, but it's simple to learn more about, all you have to do is go to G voc glucagon.com Ford slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G Vogue glucagon.com/risk.

When you arrive at contour next one.com Ford slash juicebox. You will see many things because this is the most excellent this website ever. I'm not even kidding. I love this site. You know, when you're on a website, and you think who designed this person who's never used the internet before. This site always gives me the exact opposite feeling. Everything's easy to find. It's the information I want. It's laid out well love, love, love it. So why would you go there? Well, the Contour Next One is the most accurate blood glucose meter I've ever used. It's incredibly easy to hold. It's in. Its it. Boy, it's incredibly easier to use than it is to say incredibly easy apparently. Sorry about that. It's incredibly easy to use. fits in your hand well has Second Chance test strips. So if you miss the blood the first time and only get like a little bit you can go back and get the rest without ruining the accuracy of the test. And I'm not trying to tell you that it needs a lot of blood because it doesn't it's a pretty tiny blood drop that it requires. I love this meter. I'm not making that up. It's it's legit the best meter I've ever use super, super accurate. You deserve accuracy. I know some of you are thinking like well, I have a CGM. Like why does it matter what meter I use? It does. It just really does. And you're paying for it anyway and you're carrying it around anyway, you're getting the test strips. Get a good one. You deserve that much. That's simple. Contour next one.com forward slash juicebox. This meter may be cheaper in cash than the meter you're using now is through your insurance. Crazy right? What else they ever let me look coverage and savings. I clicked on. Free Contour. Next One meter find out if you're eligible. There's a lot of stuff here. You got to just you got a look. It's a legit, legit website. Head over. Please get the meter ask your doctor for it. I mean, use my link but if you're in the doctor's office be like how come you got me walking around with this crap meter when I could have the Contour? Next One. What are you doing to me here? It'd be nice that up when you said you know, for polite conversation. Once again, you can find out more contour next one.com forward slash juicebox. Get yourself the meter my daughter carries. There are links in the show notes of the podcast app that you're listening to Right now, and links at juicebox podcast.com. If you can't remember their URL, the URL the god, I don't remember what URL stands for. It's got to be linked. The URLs got to be link. Right. Hold on. I'm sorry. I know. We'll get back to Cindy. One second. All right. Now embarrassed URL, meaning I was wrong, uniform resource locators. Man, some legit smart people made the internet and they don't think like anybody else. That's it

I'm back. Just make sure I've got my recording going again. So are you there? And yeah, I apologize there. So they're keeping in mind that I'm doing this. My wife is working downstairs, she's on a call with France. And I have two young people here cleaning up the house, like kind of outside a little bit. And I said to them, Hey, between 11 and 12, no, no loud stuff. And they're like, Okay, no problem. And then another person showed up to help them and didn't get that message. So. So there's this noise, that then my older dog is is responding to so my wife just texted me and she's like, Please do something. Alright, so I see a guy got something accomplished here, I asked him to move to a different place for a little while. So hopefully, the dog will calm down in a second anyway. I want to jump right back into it. Because I, I'm kind of fascinated by this, that you have this good recollection of the time. I want to go back to you saying you just thought you were probably gonna die. And I realized that that that's such an odd thought now, because management looks so different insulin, so different. Technology, so much different. But is, is that a freeing experience? Or is it a limiting experience to be told that your life's probably going to end short? And you will be blind when it's over?

Cindy 22:16
I think for me, it was limiting.

Scott Benner 22:20
I mean, I would imagine that I just I, I've also heard people just say like, Oh, I just thought, well, this is my lat. And then they ran forward.

Cindy 22:28
Yeah, and I think for me, it was limiting that I made certain assumptions that now are being challenged, I assumed that I would be the one who got sick, and my sister would be taking care of me. And that hasn't been the case at all. And I really worry about losing her first. And that just breaks my heart. I'm like, Oh, my goodness, like that. I didn't realize I had that assumption, when I was a kid, that I would be the one who would get sick. And I would die before my sister. So I kind of had that that was just the cosmic way. That was the way it was supposed to be. Sure it's gonna work out that way. Now. Here I am.

Scott Benner 23:06
Well, you know, you take this, this number, this 50 years number. And if you go back another 50 years, beyond 1971, you're coming right in at the advent of insulin. So being born another 60 years prior or being diagnosed 60 years prior to when you were you would have just died? Like they didn't even have insulin, it just would have been like, Hey, we're sorry, your kid's pancreas doesn't work anymore. They're going to die.

Cindy 23:32
Oh, yeah. I mean, it would have starved me to death, I would have died. So

Scott Benner 23:36
and so this is such an incredible improvement over that. And yet, your experience is still not what we would expect is expect the right word, not what we would hope for for a human beings life experience, except you somehow made it to a point where things changed. And you're seeing an incredible, I really feel like you're you're an interesting conversation because you have real world knowledge of both sides of this, it feels like to me was regular and mph. Not much of a difference. When did you get the faster acting insulin?

Cindy 24:13
Can you know I couldn't tell you for sure. I think it was maybe a little purer than the semi Wednesday and Monday. And I don't remember what the peaking time or anything like that. So my Wednesday, Monday was the thing I didn't like about regular and NPH was the absolute must eat lunch, you absolutely had to eat lunch. And even when I was in the sixth grade, I had to eat with a second graders because they ate earlier. And that was terrible. I mean, new sixth grade you want to be eating with the second graders so I never liked regular for that or even semi live day because you had to time your meals so closely to the insulin and that was problematic when I was in school. And when I was working. That was always Jag,

Scott Benner 25:00
what kind of? It's interesting, right? Back then nobody cared about kids. I know, like younger people don't understand, but nobody would think like, Oh, we're gonna make Cindy go to lunch with kids that are five and six years younger than her. She might not like that. They would just think that fixes the problem. And then that way,

Cindy 25:16
right? Definitely, yeah, no, there wasn't any of this touchy feely.

Scott Benner 25:21
But now, so let's, let's ask, what was it negatively impactful on you to sit? Because I assume everybody in that room thought of you as the sick kid who had to be there?

Cindy 25:32
Probably. Yeah. I mean, I was, I was more embarrassed. Because you know how the kids started to get that age, it was just just wasn't a lot of fun. anybody to talk to and then, and then what and then when my class would go to lunch, because I'd already eaten, they'd have me like, you know, work on the bulletin board or something like that. And interestingly, this is when I think my relationship with food started to really go south. I used to, because the teacher, one of our teachers used to give out candy to kids for rewards, while they couldn't obviously give it to me, but I used to steal her candy when I was working on her bulletin boards when everybody else was at lunch.

Scott Benner 26:15
And that's the first step in this adverse relationship with food.

Cindy 26:21
So mean actually as much candy as I was fed before I became diabetic. I'm not sure that was a great setup to begin with.

Scott Benner 26:29
Because it really felt like something got taken from you.

Cindy 26:31
Oh, yeah, absolutely. I even remember being in the hospital. When I was diagnosed and stealing Lemonheads from the little girls nightstand next to me in the room. I was in for a kid, right. So yeah, even remember, the Lemonheads to this day, though. Um,

Scott Benner 26:49
but that's a connection. So again, to kind of look backwards. You know, parents and their involvement with their children has grown over the decades. So this candy your father would bring home was probably a major connection point for the two of you, I would imagine. I think so. I think that's a good insight. Yeah. Yeah. And it's probably one of the only ways he knew how to show you. He cared about you. i I'm guessing because a guy in his 70s with kids is born in the 40s or 50s. I'm assuming born in 1913. Oh, my goodness. Excuse me. Yeah. So I'm not assuming he's, um, had some very warm upbringing coming through that time either. No, I

Cindy 27:33
don't think so. I think it was pretty rough.

Scott Benner 27:35
Do you have kids? No, I

Cindy 27:37
do not even have cats anymore. Like I can't. I'm a reformed cat lady. So I don't have no cats. I didn't have a significant other. And that's cool.

Scott Benner 27:47
So you might have just named this episode. And not meant to so you had to say something more interesting than reformed cat lady before this hours over? Thinking about that, oh my god, yeah, you're gonna be pissed when yours goes up, you're gonna be like, Oh, no. So Okay. Wow. Now, how was your health through that time? Like, or how was it measured? I guess?

Cindy 28:16
Um, that's a good question. I mean, we did the urine testing. And was actually my sister who found a doctor who was not just our general GP, who had some specialty in diabetes, but he wasn't endocrinologist by any mean. And his care was actually pretty mean. You know, you're gonna get your legs cut off. It wasn't real, effective. But it didn't make me want to try a whole lot harder, I must admit. Um, and I guess it was just by urine testing. And if you weren't losing weight, I don't really remember them paying a lot of tension and all of you, you took your insulin and you were on your way

Scott Benner 28:58
do not being dead was the measure of success. Yeah, I

Cindy 29:01
don't remember anything other than testing your urine. I don't remember them putting a lot of focus on anything else. It's different than it is now. Yeah.

Scott Benner 29:11
When do you remember it? Shifting to a one CS and that kind of stuff.

Cindy 29:19
When I was in college, I don't think I had my first a one. See, John until I was in college.

Scott Benner 29:23
Do you have any idea? What was your sense? 11%? Yeah.

Cindy 29:27
And I think that hadn't been drawn. When I was a teenager. I could have very well been even higher. Yeah. So like I say, I'm pretty lucky than I'm here.

Scott Benner 29:38
And that wasn't shocking. It was just matter of fact, right? You're just like, hey, everyone's he's 11 Did they say that do something about it? Or,

Cindy 29:44
um, they were pretty dismayed. But I didn't really have anything to compare it to.

Scott Benner 29:49
Yeah, I can't imagine a 11% is an average blood sugar of 269.

Cindy 29:57
I know. Imagine how crappy I felt.

Scott Benner 29:59
Yeah. Well, that was my Next question is at some point, do you have hindsight for how it affected your mood and your overall life?

Cindy 30:07
Yeah, I think this is gonna be it's gonna sound like I'm really exaggerating, but I think I probably felt really physically bad like most of the time. And sometimes I wonder how it affected my outlook on life because I'm not necessarily the sunniest and curious person. But I wonder if you feel bad all the time, if that affects how you experience the world.

Scott Benner 30:32
Yeah. And just the cloudiness that comes with in the brain function that is limited by the blood sugar being higher all the time.

Cindy 30:40
Yeah. And I didn't even really realize that, that that had such an effect until the last few years until I mean, I've been controlling my blood sugar's pretty well for quite a while. But really, so to pay more attention because I can loopiness last two years. Yeah, I guess I'd never really put it together so much. How my moods were really dramatically affected by my blood sugar.

Scott Benner 31:02
Does it make you sad?

Cindy 31:05
Yeah, it does. I look back and think, oh, yeah, that wasn't so good. That was kind of rough. And not a great way to. I mean, I love seeing these parents now. Like on the, on the Facebook group, just being so proactive for their kids and so concerned. Conversely, sometimes I feel like they're a little tortured by the numbers. But still, I just am so pleased to see parents really stepping in and trying to do the best for their kids. That just makes me feel like, that's gonna Bode so well, for the kids will just like with you, and Arden too. It's like, oh, that just warms my heart so much to see parents trying so hard to manage such a difficult and frustrating disease,

Scott Benner 31:48
do it the way I kind of see it, I think is, is shifting the burden from the physical of the child, like in your example, to more of the stress and mental side, and at least it falls on the parents then. And not the kids I have to say to your story hits me right in. I mean, I don't know how long you've been listening, but I am, I have a real hard time with with the idea of wasted time. You know, like I I really upsets me to look back and see that days, weeks, months, years were spent in a way that they didn't need to be and that there's no way to go back and fix them or get you know, get that time back again. And your story just makes me feel like that. It's just that. That idea of like, I wonder who Cindy would have been without this kind of feeling. Yeah, yeah. And if you don't feel that way, I'm not trying to bum you out.

Cindy 32:45
No, it's it's an In fact, it. My diabetes is me, it does not feel separate from me. In fact, it took me a long time when I would go to see a new doctor and they'd say what medications you're on, I tell them what medications I was on. And they say, Aren't you on insulin to? Oh, yeah, that's right. So for me it's a big part of my identity. So I don't even know that I can go back and say well should have coulda woulda. And the thing is, Scott is if you didn't know how to do differently at the time, you just didn't know it was

Scott Benner 33:19
the best that they had. Yeah, no, it's all hindsight that allows you to feel that way. It's you know, I'm not saying that I'm curled up in a ball bemoaning every every bad decision I've ever made. It's just it's a sad idea that that to be born, then instead of 30 years later, leads you to say I'm not a person with a sunny disposition. And I wonder how much of that has to do with that? Because you you are, you seem like a well thought out reasonable person. Otherwise you're not. You don't seem like you're depressed. You're

Cindy 33:55
you haven't heard the whole story? No, I've worked for many, many, many, many years getting my head together I really have. So I feel like I'm pretty self aware. I'm pretty self observant. I've come a long ways.

Scott Benner 34:06
What did that path that you traveled look like?

Cindy 34:10
Pretty rough, and graduated high school, which was no big deal, because that was expected. And then I went to school in Boulder and took terrible care of myself. And I don't even know if I should mention this. But Boulder, University of Colorado was a big, big big school and I was really overwhelmed by it. I just wasn't ready for a state school. Not at all. So I got proselyte I was proselytize and join this church that was a near cult. And it was just crazy in retrospect. And I was in it for a couple of years. And I just decided you know, I don't like what these people are doing. This is this is not cool. And so I left and they all ostracize me. So all these kids who I thought were my friends wouldn't have anything to do with me. So we're we're stuck in this big state school with all these kids who were acting like I was just, you know, something terrible that shouldn't be dealt with. And I wonder if that's part of what sent me into my first depression. So I was actually hospitalized when I was in college when I was a senior, so I had to go to the five year plan. But I've graduated, and got myself together for a couple years, but then I moved to Washington DC, from Colorado, and the East Coast is very different. I think you grew up in Philly. So I did not be able to relate to this. But the East Coast is very different than the West, it's just different. It's more fast moving, and people aren't as friendly. Um, so there was a bunch of other circumstances that happened at that same time, and just an attack that had really severe retinopathy. I discovered about a year after I moved here. So I actually got really depressed again, and was hospitalized again. So that was a really bad time in my life, I had really severe retinopathy, and I was hospitalized for a long time. And unfortunately, I made a couple of attempts, which I'm not crazy about. But I'll tell you this, that since then, it's so lucky that I was able to go to the hospital that I was able to go to, though surance company would pay for that now, because it really, I got better. And I've not been hospitalized since then. And I've just been able to incrementally make my life better, better and better with each passing decade. So I think had I not gone to that hospital when I was 30. That's actually where I had my 30th birthday. Um, I would never have gotten better and might not even be here. Wow. So

Scott Benner 36:40
Cindy, you just got rid of your reformed cat lady title, you did a good job there that was thinking you're like, wait a minute, I can get out of this. No, wow. Okay. Let me make sure I understand that picture a little bit. So as a senior in college, did you have what I guess they would have referred to back then as a breakdown of some kind?

Cindy 37:04
Yeah, I got really, really super depressed and it's hard to quite figure out now I did make a pretty serious attempt. And that was really scary. And in retrospect, now, it makes me really sad. Looking back at that young woman, I'm like, what a rough way to get started on your adult life. You know, like, that's, that's not great. But I got through it. And I was hospitalized a couple of times, maybe two or three times. Didn't the longest at the time was a month. But then I got out and moved back to Denver and pretty much got my act together and got my first job and did really well until I moved out here. And then things kind of went all the heck, then

Scott Benner 37:47
what do you have any idea what precipitated the first hospitalization?

Cindy 37:52
I think it was really leaving the church and having everybody just just kind of shun you. Yeah. Plus, my family was a bit of a wreck too. So I don't think that helped is really hard for my mom from for her to lose me to have me go to college and be independence. And so I think there's a combination of things.

Scott Benner 38:14
And then you did finish up school. You traveled east? And then and I'm sorry, but when you say attempts, you mean suicide, right? Unfortunately, yeah. Okay. And then and so you had a couple of more goes with it there. And then were hospitalized a couple more times, I would imagine around the attempts.

Cindy 38:34
Yeah, yeah, I was, I was pretty sick. And so I was having I couldn't work. I was having a really hard time working. But I was also going blind at the time, not blind, but it looked like I was going to go blind because I have really significant retinopathy in both eyes. And so I was having a lot of laser treatments. And somebody who had promised to move you for these sorts of for somebody who promised to move here with me didn't. And so that sort of broke my heart. And then Washington was, was different than Denver. And it was really hard for me to sort of scale up to me now, I could do it because I know what cities are like, but then I didn't know I mean, I grew up in suburbia, almost a rural area. So it was very different moving here. It was hard and then almost going blind didn't help either. So it's like a confluence of things.

Scott Benner 39:23
Yeah. No, just a lot of stuff that all felt like it had no exit. I feel like

Cindy 39:28
Yeah, I mean, it was scary thinking about going blind. I mean, I felt like I dealt with it pretty well. Like I went to the Columbia Lighthouse for the Blind and saw their apartment that they had you stay in and things that they could teach you and so I felt like I've dealt with it pretty well, but it didn't mean it wasn't scary.

Scott Benner 39:45
Well, so you were really oh gosh, okay, so you were headed towards blindness and preparing for it. And yeah,

Cindy 39:52
oh yeah, I thought for sure. My my, my retina guy who I love Oh, thank God for this guy. Um, he saved my vision. He didn't say anything at the time. But many years later he said, Yeah, your retinopathy was pretty bad. And for a doctor to admit that even many years later is usually means it was pretty bad. You know, usually they're not that forthcoming. So yeah, it was really bad. I have like 18 laser treatments, because this is the era of lasers and for have attracted me is I guess,

Scott Benner 40:25
oh my gosh, Is it painful to have worked on your eyes like that?

Cindy 40:29
Yeah, well, the creepy thing is if you have an ocular block, it's not so bad, but ocular blocks. In fact, you can't feel anything if you have an ocular blood. But the ocular box really creepy because they have to inject anesthesia in your face so that the needle gets back to your ocular nerve. And you can't close your eye. So they're coming at you with this big needle. I mean, I'm sure people who are getting shots of their eyes now from for retinopathy, I'm sure they have similar stories. I don't know what the shots are like now. And the attractive bees. They're just a pain because I couldn't drive for a long time. For a while I couldn't see people's faces. And that was really dismayed. You take for granted how much you information you gather and how much connection you have to see people's faces.

Scott Benner 41:17
Yeah, I have to tell you, the short story is still I can't quite get the tightness in the chill out of the top of my spine, but I'm working on it because I think I drew myself a picture while you were talking.

Cindy 41:28
Creeps people out that story does and it was pretty creepy. Don't close your eyes. That's a really big needle. It's right under your eye to get back to your ocular nerve.

Scott Benner 41:38
Okay, okay. All right. Good. What we're gonna skip over that. Oh, my gosh. What? So I'm assuming, you know, the control is what set you towards the retinopathy. So is, is that the moment where you figure out how to manage in a different way or not?

Cindy 41:58
It did bring me up short, I really do. And at the time, 20 years out from diagnosis was usually typical for getting retinopathy or being diagnosed with retinopathy. And once again, I had thought, oh, once again, I met the milestone. 20 years, there I am. But that's when I started to think, no, maybe this could be different. You know, maybe you don't have kids and that next milestone, which is the kidney failure, maybe you can promise I didn't have the best relationship with food. I used food a lot to comfort myself. So it was difficult to sort of get around that. And it took me quite a few years to stop using food to comfort myself. And then the other thing is I have wicked sweets. It's just a wicked, sweet tooth. So that's always been problematic. being diabetic, too.

Scott Benner 42:47
How did you how did you overcome the food discomfort?

Cindy 42:52
I think I, some of it's just gaining mental health. Okay. I think introspection and connection is support. And I think a lot of it is just mental health. Oh, I'm using my hands again, my bracelets bumping against my watch. So let me stop doing Thank you.

Scott Benner 43:09
You see, you just you sort of found more clarity in your life overall, and then didn't have to go to the food in the same way.

Cindy 43:17
Exactly. Yeah. Okay.

Scott Benner 43:21
I have to collect myself for a second. Like I remember your email, but I wasn't 100% ready this morning. So there's a lot going on here. And so I didn't have I usually take a couple of minutes to like, gather what I'm thinking about before I sit down, but you and I just sat right down. And there were a couple of technical problems. And then like 30 minutes later, you have a needle in your eye. And it's I want to make sure I do do justice to your story here. Okay, let's see. So, so the shifting your relationship with food, does that coincide with a better understanding of insulin? Or was that in itself just a big improvement for you?

Cindy 44:03
It's a big improvement. I think it just gave me more just mental health so that I wasn't turning to food for comfort. I was turning to other things. And you know, I'm, I'm not you talk a lot about knowing about how insulin works. Still not sure I know how insulin works. I mean, I know how it works. I understand how it works and I understand peaking and all that good stuff but sometimes I still feel a little flum expire, like what is this about which is jumping far ahead but I'm actually experimenting with eating and low carb because I just can't get this carbohydrates thing down I Pre-Bolus I do all kinds of things. Now my budget gets high and then it gets low and then I get frustrated and then I you know start griping about it and some really trying to low carb things like blood sugars are just so much better and they're not. It's just

Scott Benner 44:54
easier. I would do whatever is best, especially when you have advanced it shoes. I mean, that just sort of makes sense to me. And you're willing to do it. And it's not causing you any kind of emotional trouble to Ed that way. So I would do it.

Cindy 45:12
Yeah, I'm working on it. Because I really I think that needs a little bit of help, though, because I keep having lows. So I got to kind of figure that out. But I'm pretty on top of everything.

Scott Benner 45:20
What is it? We need a little good news here? What is your agency right now?

Cindy 45:25
Oh, I'm so proud of my agency. This last one was 6.3%. And the one before that was 6%. So really excited about those because that's the first time I've been able to break seven. Well, no, I broken 10% A couple times, but only like 6.8. So that 6.0 I was so excited. I posted on Facebook, this is what my human will name once he is wow. I was really excited. So and actually looping and being exposed to your group. And a lot of the things that I've learned just in the two years that I've been looping have also really helped me gain better control. What pump are you using with the loop? I'm using old Medtronic pump. Okay, cool. Oh, that's

Scott Benner 46:07
amazing. Good for you. That's just so that is so exciting. So you're telling me that this, this improvements, only a couple of years old for you?

Cindy 46:17
This market improvement? Yeah, yeah. No, I've always really struggled to break that. 7%. And there's also something that I've picked up from you. And I wonder if it wasn't part of my thinking is that well, that's just the way diabetes is. Is if you think about it, that's kind of how I grew up, right? Yeah.

Scott Benner 46:37
No, every step of the way it was don't eat sugar, or you'll lose your eyes. That's what happens. And and and other messages like that. And then by the time you're 30, your site is impacted. I don't see how you wouldn't believe that.

Cindy 46:53
Yeah, so it's been interesting to sort of recognize that be like, Wow, that point there.

Scott Benner 47:01
Thank you. This makes me feel nice. Thank you. I, I have to say that has always, just from the beginning, robbed me, oddly, from the very start of my daughter having diabetes, and a doctor, intimating it and then being, you know, starting a blog and having more contact with people who had type one and seeing other people who were writing about it. I just, I just really much rub up against that idea of like, well, this is it like this is it, there's nothing you can do about it. I hate it when people say that's just diabetes. In even when they're just being flippant about it, which I understand completely, when you're just joking a little bit, it still makes me uneasy, because I think someone's gonna see that. And that's going to be their thing that they use to give up and say, say, somebody else agrees with me. This is the best I can do. It's not my fault. It's not because I don't understand something. It's because the magic diabetes fairy has controlled my life. And so this I'm just on a wild ride to the end now. And, and I don't think that needs to be I mean, your example, proves that out over and over again. Do you have any other autoimmune issues?

Cindy 48:20
A little bit of hypothyroidism but really lucky, I have some other complications, but they haven't been debilitating anywhere bilateral frozen shoulders and getting the tendinopathy type things like the trigger fingers and that dupa Chin's contracture, I think it's called some getting more of the sort of tendinopathy stuff, but it's not so terrible that I can't and the frozen shoulders are pretty bad, but they're not like going blind or being in kidney failure or having your feet amputated or anything like that. I mean, they were a pain, but no pun intended. But I, you know, I've got through those,

Scott Benner 48:59
you go through them real quickly with me, frozen shoulder, how does that present?

Cindy 49:04
Your shoulder freezes, actually, it was really incredibly painful, usually to non dominant side. Really, really painful, you lose range of motion. Now, they, when you look online, it'll say, oh, usually resolves in six months or 12 months or 18 months. For me. It started in 2006. And I was just able to swim again, with both arms across the pool last summer.

Scott Benner 49:32
So we swimming in a circle up until then,

Cindy 49:35
exactly, it was one arm. Yeah, um, but then it happened to my other arm too. And that I was really unhappy about because it was so painful. My left shoulder wasn't happened to my other shoulder on my on my shoulder. And I just knew my shoulder was never going to be the same and that really frustrated me that I was really cranky about it didn't get as bad as my left shoulder. So that's encouraging, but it's still not bad. So what it was before it froze, I'm

Scott Benner 50:02
sorry. Is There A Treatment For or

Cindy 50:06
physical therapy, which I found to be well, actually a full honestly. And I wish I'd done more research had it manipulated under anesthesia, where they just manipulate your arm and terrible the scar tissue. I really regret doing that, because it's really painful. And they couldn't give me cortisone. And they sent me to physical therapy the next day. It was good. It was terrible.

Scott Benner 50:29
So you're telling me that they shot you up? So you couldn't feel it? And then manipulated your arm in a way that broke up all that? And then there was no medication afterwards? Exactly. And then wanted you to keep moving it?

Cindy 50:40
Exactly.

Scott Benner 50:41
How long was that process?

Cindy 50:43
Quite a while. Um, I think I did physical therapy for a while. And that was incredibly painful. I think we've time it would have gotten better on its own. I don't think that going through all that made it better any faster. I think with time it would have resolved I say,

Scott Benner 51:01
what were the other two things you mentioned, there was something about your hands, I feel like

Cindy 51:05
your finger your finger gets locked. Okay. It's a tendon thing. And pretty typical with type one, I think, well, what diabetes in general, and then is new for me the stupid Chin's contracture, it does what it's called. So you get these lumps in your hands, and then doesn't have everybody doesn't progress, the same for everybody. But you get cords that extend from these lumps in your hand, and they draw your fingers in towards the palm of your hand.

Scott Benner 51:35
Oh, no kidding. A gradual thickening and tightening of tissue under the skin. And the hand condition most often affects the fourth ring, and fifth little finger over time, can cause one or more fingers to stay bent towards the palm. This can complicate everyday activity, so it doesn't like you can't make it go back.

Cindy 51:56
I can't Well, my hands are not so bad now. I mean, I have the bumps in my hands, the lumps, but my fingers are fine.

Scott Benner 52:03
And did they did these did that get better as your blood sugar improved?

Cindy 52:08
This is a recent thing. Oh, it's recent. Started? I'd say within the last year six months. So seems is that it's kind of frustrating that I have an A one C 6%. Yet I'm still getting these. What are considered complications.

Scott Benner 52:24
That sucks that it sucks that? I don't know if you've, you know, Jenny from the like, the pro tip episodes and stuff. Yeah. Yeah. She always makes that point that she wants people to understand that. You can't bank good health. And that and I just, it sucks because you put all that work in and you came all this way. And you figured out so much. It just sucks that there's not a there's not a not a trophy at the end full of like, I don't know, you know, no complications or something like that. Yeah, it is unfortunate. Yeah, you don't you don't win a you don't win a prize like that. You do win. I mean, feeling better. Do you see yourself as a different person now? Like, forget the depression and the emotions and all that stuff. But just clarity wise, do you feel different?

Cindy 53:13
Yes, yes. And people have told me I'm different to well, Q is told me I'm different. He's like, Oh, this low carb thing must be great. Because you're so nice. What am I like, what? I'm not nice? You've been so sweet lately, like, okay, I guess I'm really reaching when I'm not like,

Scott Benner 53:31
you gotta you gotta throw a special shout out to all the significant others in the world who who are with somebody who's impacted like that, because it's difficult to love a person who is I don't know what the word is, but not always the way you expect them to be. And yeah,

Cindy 53:51
here it's tough. I mean, it's hard for me to relate to you because I'm the one who happened to low blood sugar. Right? So no, right. I used to be in pain since and I know it can be really hard on him sometimes, particularly when it's like, what is this about? And if I don't recognize it's low, you can get pretty pretty. Yeah, pretty quickly. And then I always feel so bad, but then part of me doesn't feel bad because I'm like, Well, I didn't.

Scott Benner 54:17
It wasn't me. City. Are you? Are you I mean,

Cindy 54:21
that doesn't quite slide that I mean, it's true. That that I don't know.

Scott Benner 54:27
It's true for you. And not that important to him. Exactly. Yes. Right. It's everybody's got their truth in this and not one is more more deserving of attention than the other it's just it's what it is. It's what it means to be with somebody who you know might get a low blood sugar and you're the mean drunk equivalent of getting a low Are you like personally mean when you're

Cindy 54:51
like candy? Yeah, I can really, I just lose all reason. You know, they just, they just think that oh, things that shouldn't set you off are things that are not a big deal. And he was so sweet the other day he make breakfast. And that's kind of a rare occurrence. And so he was really proud of that foolish me, I took my insulin much too far ahead thinking I'd Pre-Bolus thinking he'll be done and he wasn't done. And so a bunch of got really low. And I blamed it on him. I said, you took too long making breakfast? Well,

Scott Benner 55:25
that ain't gonna get your breakfast again anytime soon.

Cindy 55:31
So, so that was that was not a good diagnosis. If

Scott Benner 55:34
you're lucky, you didn't have to catch a box of Grape Nuts coming into your head in that situation.

Cindy 55:39
I you know, later, I felt really bad. It wasn't his fault. You should have you know, had, we should have asked him when is this going to be ready? When's your best guess? But I took my insulin thinking that I was making breakfast and it would take me this long to finish breakfast. Not Hello, it would take him to finish breakfast.

Scott Benner 55:58
Yeah, I know, this isn't diabetes. But I have mentioned on the show a number of times I, I found out that my irons been low for a fairly significant swath of my adult life. And that I have it up now where it belongs. And the same exact things, you're talking about just having reactions to things that aren't commensurate to what's happening. Like, it could be like getting upset about just nothing. And it feels completely legitimate while you're doing it. It does not feel like it doesn't feel like Oh, I'm now upset about something that I shouldn't be, you're like, This thing feels incredibly important in that moment, and every one of your reactions feels warranted. And the people around you don't know your irons low, at least at least they can look at you and think like, I bet her blood sugar's low, you know, I for until it was identified, no one knew it. And then even after it's identified, the thing that I noticed that was kind of crushing from my side, but I think relates to what you just said, and is understandable, is that it didn't immediately wipe the slate clean with the people around me who had to experience it.

Cindy 57:09
That's probably true. Yeah, it's not like you're given all of a sudden, okay, we understand,

Scott Benner 57:15
right? It's hard to give away. You can't just give away feelings that you've had in the past, because you now understand why they happen. You can't just forget them. Now, that's a good point. Yeah. And it's, it's, um, anyway, that's, it's sad to me that that happened to me or that it happens to other people. Because I do have that feeling of like, I wonder how I would have been in these scenarios. Like, I wonder how much of what my children think of me would have been different if my iron level was 30 points higher, which is so ridiculous. You know, because I am definitely different now. And just by different I mean, like, I don't find myself being irritated by things or upset or gruff. nearly as much I still, you know, like, sometimes something just makes you upset, but the threshold for it is so much higher now.

Cindy 58:02
Have other people noticed it too? Or have you just mainly noticed it

Scott Benner 58:06
in my family? Everyone here knows. Good? Yeah. Good. So,

Cindy 58:10
Jamie, it's nice to have that positive. You know that what's what's the word? I just like? Just like so much validation, validation.

Scott Benner 58:17
You don't like the word validation? No, no. It's because you're, it's because you're gruff. Cindy. Don't be talking about positive stuff. All the soft kids nowadays. You know, I'm just Well, I mean, you've been through Cindy, and I made a cursor, you've been through a hell of a thing, really is something else. And you You seem really good natured about it now. And try to be pretty

Cindy 58:45
open about it. I'm pretty. I mean, this is a phrase that I'm not crazy about, but it is applicable many times it is what it is. It's like well, that was my history. And not a lot I can do about it. Now. Like you were saying earlier, there's me you can't go back and change things. And maybe it's part of what's me. Me Me now.

Scott Benner 59:10
Yeah, I have to say that I had no intention of this when we started talking, but this is an after dark episode.

Cindy 59:17
I thought it might be the other day you posted on Facebook. Like I'm looking for people for more after dark episodes. And I got you. I almost posted we have a date. Just wait.

Scott Benner 59:30
I held off. No, it really is. And I'll tell you these, like I find this conversation with you. enlightening, and it feels it's a little difficult for me because I don't have the ability to talk about things preferentially. You know, like I can remember like a friend of mines father passing away and you know, he's crying and I'm joking about it at the same time. Like I don't know how to I'm not good. That, like, I'm not good at just, I also don't think anybody would listen. By the way, if this was an hour of you just recounting a horror story after horror story, I don't think people would be able to get through it. And I think I was gonna say a lot. But I think everything that you just said, is incredibly important to hear for people. And I want them to be able to get through it, and and to listen to it and to hear that you're still a person who has a life. You're not. You're not a case. You don't I mean, yeah.

Cindy 1:00:25
So I mean, that's part of the reason I, when you said, you know, you think you'd be a good candidate for the podcast, I thought, well, you know, it's been 50 years, and I want people to know that you can make it that long, even if you were diagnosed in the dark ages. And just to just to give people a sense of like, yeah, you can get through. And so that's part of the reason because I thought, well, you know, maybe people can glean something from my experience. And if that's the case, that's great, right?

Scott Benner 1:00:52
Just imagine, and just, well, first of all, I'm sure that that's the case. But just imagine 50 years from now, I'm 100 years old, I'm doing this podcast, and and I'm interviewing somebody who was diagnosed, you know, this year, and that how much different their story is gonna be, they're gonna, they're gonna, they're gonna have a story that sounds like I was diagnosed. My parents were scared. They got me a continuous glucose monitor. A year later, I get you started using an algorithm that kept my blood sugar stable. And to be perfectly honest, I didn't notice it. I mean, it sucked having diabetes, but their story is gonna not mirror yours in any way. Hope. So I really hope that's the case. At least, it could be I guess,

Cindy 1:01:35
I hope so. I really do. I think it could be I think just even within the last 10 years, I mean, CGM, and comps and it was on a pump quite a while before I was on a CGM. I'm not really sure how I ever did it. Didn't have very good information to be on the pump. And I would rather be with if I ever had to give up one of the one of the other I'd give up my pump before I'd give up my CGM. I always tell everybody that

Scott Benner 1:01:59
well, yeah. And I would say I was gonna ask you as a person who's had diabetes, this long, greatest adventure ever for diabetes. What's a CGM is the greatest Advent for diabetes that you've seen. Yeah,

Cindy 1:02:11
yeah, better than the better insulins better even then the pumps. I think the CGM is just I know everybody uses this phrase. But as a game changer, I really do think it's just, it's just, it's just remarkable. It's probably the best thing that's come along, in my opinion. Yeah,

Scott Benner 1:02:27
I have to agree. I don't have nearly as much time with this as you do. Being around it. But I, I haven't seen anything that's more impactful than this. There's ways around some of the other stuff. But this thing is just it just allows you to make decisions that are are so much more accurate and thoughtful.

Cindy 1:02:46
Yeah, I'm also curious about algorithm pumping. Loop has made a big difference. I did looping for two years now. And what you will hear so many people mentioned if you've mentioned is sleeping through the night, in fact, it was cute. Not too long after I was on loop. My significant other said, How come your alarms not going off in the middle of the night?

Scott Benner 1:03:11
Yeah, excuse me, um, you know, harden has been using loop for a long time. And I'm still very excited to try like Omni pod five, because sort of like what we just talked about is, is that if, if if if Arden can get on on the pod five, and it works, the way loop works, it still takes out that little piece, there's no connecting that Riley link ideas gone. And that just makes it incrementally better again, and so I have my fingers crossed for it. I can't wait to try it. And see. Well, I

Cindy 1:03:39
think there's a lot of good things coming down the pike. Yeah, control

Scott Benner 1:03:42
like you from tandem. People seem to love Medtronic is going to refresh their algorithm, I would imagine sooner than later. You know, it can only get better. Like, I really feel like when Arden's in her 20s I might even be shocked by what's going on.

Cindy 1:04:01
I hope so. I really do. I hope so. I mean, I really, I really want the kids who have been diagnosed down kids, the parents of the kids I see. Like in the Facebook group, I really want those kids to do well. And it just warms my heart so much that people are looking out for their kids. And this sounds silly, I know. But it really does just because parents should look out for their kids, but it is a different era. And I really love it when parents even though I feel bad for them sometimes because it is it is a burden for sure. And I do feel like they can be a little tortured by the numbers and see that's one thing that was easier. There were no numbers when I was a kid. But it wasn't healthier. So I would I would take the numbers over not knowing the numbers.

Scott Benner 1:04:46
I enjoyed listening to you talk yourself through that just now. Honestly, I really did because because you have like a you have there's some romantic feeling about diabetes prior to understanding the data where you're like I didn't really have to think about it. But then you're like, but look where it led. Maybe it would be better if I just had to have thought about it. Which you you agree with, because you said to me earlier, you know, when you heard me say, you know, don't listen when somebody says, Oh, that's just diabetes. I feel like those two things connect somehow. So it's very cool. Did this podcast help you, Cindy?

Cindy 1:05:22
Oh, yeah, no, this has been great. It's really nice to be able to tell my story. Because probably not the best story ever. But I do, I just want to give people some hope that I have made it 50 years. And yeah, that's some complications. But I also didn't take very good care of myself, and had I taken better care of myself. And I also think I'm very lucky. I think I may mention this in my email, but a friend that I went to summer camp with died when she was 35. And so I feel very, very, very fortunate to be here. And she did not take very good care of herself. Plus, her mother had died, and she had been type one. So I feel really, really fortunate to still be here. And I need to remember that on my cranky days are on my sort of very lucky,

Scott Benner 1:06:08
I think the thing, the nicest thing you've said in the last hours that you feel lucky. I think that's great for people to hear. Because you maybe did just get a little lucky. Like, that's a great example, like things go a little bit different one way or the other. And your friend, you know, loses her life in her 30s diagnosed around the same time, as you imagined. Yeah. And so starting from that point, you had as much chances not as being that way, too. I would assume as many people probably were, who were diagnosed back then. And yeah, and instead, you've got a you things, as much as your description makes it sound like things didn't go well. They at least went into a way that you're here. And you have this new clarity, and an opportunity to take better care of yourself. So when absolutely

Cindy 1:06:59
no, I'm very lucky, and also helps with my mom's 95 I think I've got good genetic loading too.

Scott Benner 1:07:05
I was gonna say you might be a little bit of a genetic badass and not even know. Badass or like, no, seriously, like, your body might just have like, its own pseudo armor or something. And that's my Yeah, it's important for people to remember too, we all don't get the same. The same go. So that's another great reasons to take incredible care yourself.

Cindy 1:07:26
Yeah, I agree. I agree. And the playing fields, not even our level what I knew for tificate those things, right? I'm always like, throw rocks at brick.

Scott Benner 1:07:36
level playing field was the right way to go. I should have said that I used 1000 words, instead of just saying everyone's playing fields, not level. But I think that's important cuz you don't know when you're diagnosed. If you've got Cindy's constitution or somebody else's. And you know, so taking the best care of yourself, you can is going to give you the best opportunity. And I think that's really all you can do. Like, I feel like if that's what you did, then whenever things go wrong, if they go wrong, at least you can say to yourself, there was no better way for me to have done this. Oh, I

Cindy 1:08:09
agree. I think you should give yourself a fighting chance. I really do.

Scott Benner 1:08:12
Wow, you're really but this was wonderful. Did we not talk about anything that you were hoping to talk about?

Cindy 1:08:17
No, I think we've covered it. Wow. You were delightful. Oh, thank you. I was hoping for that. I was like, I wonder if that's gonna say I'm delightful.

Scott Benner 1:08:25
Oh, I'm delighted. That's how I know you were delightful. Can I be honest, maybe you weren't. But I'm delighted. So maybe that's what I just touched like people. Like do you think people who we get to the end and I don't say their delight for do you think they're let down? A lot. Do I? I don't know. I really found this delighting.

Cindy 1:08:44
I look good. That's a compliment. Thank

Scott Benner 1:08:46
you. Oh, 100%. I am. I used to find myself at the beginning of new episodes. When I set them up to put them out. I'd be like, I love this episode. It's my favorite one. And I thought that sounds disingenuous. So I stopped saying it. But I do feel like that. Like, I never put out an episode where I'm like, This is crap. You know, like I,

Cindy 1:09:05
I think that comes through so that I think people can tell that I hope you can tell that you've put thought into it and that you've engaged people and the only thing that's been hard for me is I keep wanting to ask you questions, but I had to remind myself No, no.

Scott Benner 1:09:19
Well, you want to ask me a question asked me a question.

Cindy 1:09:21
Well, I'm just curious, like, what's gonna happen when Arden goes to school? Just those kind of questions. I just think about these things. I don't know that is thinking about your family. It's none of my business.

Scott Benner 1:09:31
I'll feel a couple from you. But so the first one you just asked, that is the favorite question of long time type ones. Really? Yes, people who have had diabetes for a long time, who experienced it? This is me in firing, but experienced it prior to glucose sensing and blood glucose, blood glucose meters that could be used more frequently with more accuracy. People who were just in that like take a shot in the morning try to eat around Hear sliding scale, anyone who grew up through that, I imagine didn't have as much connection with their parents and their care. And so this amount of connections seems this is a lot of me in firing, but I feel like this amount of connection feels like it's not real, or it's too much, because it's not as it's way more than what you got. And therefore, it feels like Arden must have no grasp of diabetes, and will be lost when she's like, set free into the world does that about how it makes you feel?

Cindy 1:10:36
Yeah, I confess that I do worry about that. I have thought about it. But I wonder about both of you just like how the dynamics dynamics are gonna change. I don't know why think about

Scott Benner 1:10:45
well, when she leaves, I'm just gonna have to go adopted another kid with diabetes to give me something.

Cindy 1:10:49
I think so. Yeah. Yeah. Gotta have some fodder to so no, I think she'll do great. I just interesting to hear and to think about just like, wow, cuz I know, she's, she's getting pretty close

Scott Benner 1:11:01
to be 17. This summer. Again, she's looking at colleges. And she's gonna, at some point, we're going to do some interviews on the podcast weather, and I'm going to try to talk her through some of the ideas that I think she's gonna need to know. Like, I'm gonna talk to her. Yeah. And at the same time, it's not like, it's not like when she goes to college, I'm going to tell her never contact me again. So that we could do that. No, I'm

Cindy 1:11:21
sure that's true. I just think it's, it'll be interesting. And I won't be seeing because I'm not in your household and not living next door. But the dynamics will be interesting to see how they play out. I mean, I think she'll do really well. I don't have any doubt about that. I'll be curious to hear where she goes to school.

Scott Benner 1:11:37
I can't wait. I can't wait to talk about it. Like I already told her. I was like, I'm gonna keep doing the podcast, even after you move out, you know, and she's like, why won't even be here? I'm like, I still think we're gonna talk. And if not, then we'll talk about the disillusion of our connection around diabetes. Like, there's, there's plenty to talk about still?

Cindy 1:11:53
Well, there's plenty. And I've been thinking about it. She was like, No, you know, even when she does move out, and she's not under the same roof, or when she goes to school, she may be under the same roof sometime. There will still be plenty of things to navigate with diabetes. Yeah, I mean, so you guys, you'll have plenty to talk about, I'm sure.

Scott Benner 1:12:12
And on top of that, just between her and my wife and I, I have a unique situation here. I've talked to more people with diabetes than maybe some doctors have, right. And so I'm fairly aware of the pitfalls that lie ahead. And I hold no illusion that they're going to miss Arden because I'm the guy with the podcast, who knows how to make your agency stable? Do you know what I mean? Like that? I don't feel like she's gonna miss those things about having diabetes just because of her connection to me. So I want to be sure, yeah, so I want to be there. And as much as she wants me to be is the other thing too. Like, you know, I'm not gonna infringe on her life. But I'm trying to set up a relationship now where she'll feel comfortable reaching out and saying, Hey, Dad, I my blood sugar has been 200 for three days, and I don't know what I'm doing, you know, like so. Because that's

Cindy 1:13:03
just what I've been able to infer from fi I think you've set your kids up like that. Anyway, I hope so aggressively, be more independent. I think you've done a good job there.

Scott Benner 1:13:12
And at the same time, be willing to just like, I got a note from my son the other day that, you know, it felt like a 12 year old Senate to me, but I thought that was good, because it felt like he bumped into something that he just didn't understand. And instead of just ignoring it, he's like, Well, let me get some more context for this so I can deal with it better.

Cindy 1:13:30
Oh, that's great. That'll do it really well. Oh, so you're both of them as adult? I've

Scott Benner 1:13:34
all my fingers crossed right now.

Cindy 1:13:36
So you know, you're sure me

Scott Benner 1:13:37
too. What else? Oh, God asked me something else.

Cindy 1:13:40
That now It slipped my mind. It's made me curious about Arden. And how the dynamics were going to change because I can't think of the other question I had. So I guess I can't ask any more questions.

Scott Benner 1:13:49
Well, if you think of them, you let me know. I really appreciate you doing this. I really thought I thought this was wonderful. And I and I think you dug through a lot of personal stuff over a lot of decades, which can't be easy, and I really appreciate your desire for other people to hear it. So thank you very much.

Cindy 1:14:07
Well, thank you. I've really enjoyed myself.

Scott Benner 1:14:08
I'm glad this is an after dark use the length of time she's had diabetes. That's the title. A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kaipa pen at G voc glucagon.com Ford slash juicebox you spell that GVOKEGL You see ag o n.com. Forward slash juicebox. Also want to thank the Contour Next One blood glucose meter remind you that you deserve an accurate and easy to use blood glucose meter. Find out more at contour next one.com forward slash juicebox and take the T one D exchange survey T one D exchange.org forward slash juice box you just have to be a US resident have type one or care for someone with type one thank you so much for listening I'll be back very soon with another episode of The Juicebox Podcast