Scott Benner 12/17/21 Scott Benner 12/17/21

#596 Diabetes Variables: Alcohol

Diabetes Variables: Alcohol

Scott and Jenny Smith, CDE share insights on type 1 diabetes care

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

Scott Benner 0:00
Hello friends, and welcome to episode 596 of the Juicebox Podcast

so this is it. This is the last episode of the diabetes variable series with me and Jenny Smith. And today's topic is alcohol. You see how I've timed that to coincide with New Year's? Huh? That's right, I'm thinking. Please remember while you're listening 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. Today I'll be speaking with Jenny Smith, Jenny has had type one diabetes since she was a child for over 30 years. She also holds a bachelor's degree in Human Nutrition and biology from the University of Wisconsin. She is a registered and licensed dietitian, a certified diabetes educator and certified trainer on most makes and models of insulin pumps and continuous glucose monitors. She's also Jenny from the Juicebox Podcast. So come proper. I really hope you've enjoyed the variable series, if in the future, Jenny, and I think other ones will add them. But if not, they're always there for your needs and enjoyment.

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. Jenny, this is the last variable we're going to record. It's very exciting.

Jennifer Smith, CDE 1:51
That is very exciting. A whole year of recordings of variables. That's that's a lot of variables.

Scott Benner 1:55
I'm not kidding about it. At one point, I looked at the list and I was like, Why do I like this is not a good idea. But it ended up being great. And I really did enjoy it, you obviously brought a ton to it. So last one alcohol. How was alcohol a variable for for using insulin?

Jennifer Smith, CDE 2:15
Well, alcohol is a variable because alcohol can lower your body's ability to respond to the typical turnaround hormones that would raise blood sugar, you know, if you have a low, and so alcohol in and of itself, and we're talking like several drinks, or even just wondering, depending on how your body tolerates alcohol. And many people I think are kind of confused what to do about alcohol because they feel like well, if they're drinking like hard liquor, for example, really doesn't have carbohydrates in it. Right? So you may not be bolusing for it. And should you know not not necessarily unless it's mixed with like cranberry juice or orange juice or something like that, right. But other types of alcohol such as beer, have a fair amount of alcohol to them. carbs, or sorry, yes, alcohol, carbs. Yes, thank you. I was thinking Alcohol Alcohol. Yes. So there's, you know, I mean, anywhere between 12 to maybe like 22 grams, depending on the size of the bottle or the can or whatever you're drinking, really. So do you cover the carbs? And then what happens later, right? Do you take insulin to cover the bottle of beer that you're drinking? Do you not what happens most people who don't cover the carbs initially will have a higher blood sugar.

Scott Benner 3:42
So is the concern around bolusing for carbs that are an alcohol that at some point, you become a knee braided and are not the best shepherd of your blood sugar if it gets low?

Jennifer Smith, CDE 3:52
Those are the good questions to always be thinking about. Yes. Because in terms of low from alcohol, low from alcohol is a delayed low. It will tend to happen later on. So our typical recommendation on a normal conventional pump. It's a little more a little more, I guess difficult if you're doing injections, but on a pump, it would usually say at the end of the night, let's say you've had several drinks over the course of the evening. It's midnight you get home at that point, you want to really decrease your Basal insulin delivery, because that's when alcohol is likely to come into the picture in terms of hitting you and causing you to go low.

Scott Benner 4:41
And is it the actual alcohol that's bringing you down or is it your or is it the Bolus that you used or know if even if you didn't Bolus you would get low afterwards.

Jennifer Smith, CDE 4:51
It shouldn't really be the Bolus I mean again bolusing has a definite like end point of action right let's call it four hours, just give or take three to five hours, four hours. So if you left Bolus at 10 o'clock, you're low at 2am. Sure, it could have something to do with some of that Bolus still being left in the system. But it could also have to do with the way that the liver turns around and deals with, let's call alcohol a toxin, right. So as the liver is dealing with turning that alcohol around and getting rid of it in the body, your liver is also not putting out the typical turnaround for drop in blood sugar, right? You don't have that counter regulatory hormone production, so that your body has some glucose drip coming out of it saved stores to help you. So in that, we usually say for every alcoholic beverage consumed, we really want to take the Basal rate down by a certain percent for about two hours per beverage consumed. Okay, so if you had three beverages at the end of the night, the percent that we would take it down would be by 40% of a decrease. And then the timeframe to decrease would be about two hours per beverage.

Scott Benner 6:08
Okay, so So you're basically people might not recognize that your liver is making glucose in, you know, and giving it is giving it off, like glucose, is it glucagon or glucogenic? Or I forget the word,

Jennifer Smith, CDE 6:23
right? I mean, your body's counter regulatory hormones essentially coming from the liver or helping your body to essentially put out in the TR in terms of a low or a drop like that, it's helping your body to put out the glucose, right? I mean, that's why we have glucagon kits, right glucagon kit is a really quick turnaround of telling your body to spit out the glycogen and to turn it around into glucose to sort of bring you up from the low.

Scott Benner 6:51
But if you're, if you're taxing your body with enough alcohol, the liver gets focused on that. And then as your blood sugar gets low, it doesn't go through that process. In the same

Jennifer Smith, CDE 7:02
way, it doesn't go through that big process of counterregulatory. But also remember, the reason that we're taking Basal insulin is to counter the production and natural drip drip of glucose into our system to begin with. So if the liver is busy taking care of alcohol, it's no longer going to help with that normal drip, drip drip of glucose, and thus, your Basal is going to be too heavy for you. Okay, in layman's terms, right. I mean,

Scott Benner 7:29
listen, it's not a it's not a deep dive into how the liver works. But it is something I don't think people think about for certain, you know,

Jennifer Smith, CDE 7:37
and I think it's something that often isn't even brought up like I, I try really hard with a lot of the teens and those heading off to college that I work with, I try to bring up alcohol at some point, because it will come into the picture. Yeah, I mean, unless you're unless your kid has really sworn off, because they just don't have any interest in that. At some point, alcohol will be something they need to think about. And it's really important that they know better how to adjust if needed, than just say, Well, I'm never going to do it.

Scott Benner 8:12
Right. Okay. Does this? Does this need a bigger episode? Or? What do you think?

Jennifer Smith, CDE 8:19
Come on. What do you have more? More questions?

Scott Benner 8:22
No, I just I don't know if it's, I don't know. I mean, it's like, you know, it's if you're, if it's beer, beer has carbs. If you're drinking, you know, some harder liquor, there's no carbs in them. But you have to look and see if you're going to add fruit juice just seems like maybe I could understand that when I start. But what happens when I'm like three drinks into it? Like, where do I? You know, what do I do when the when the room starts spinning? You know what I mean?

Jennifer Smith, CDE 8:45
Right? I mean, the big things with alcohol, too, that we always recommend is definitely have something to eat with it. Right? So it's not just alcohol. I mean, you you probably know that. Or maybe you don't, I don't know, whether you drink or not. But if you don't, if you drink something on a pretty empty stomach, the impact of the alcohol is faster, right? You will feel the impact. Versus if you have it with a meal or at the end of the meal. Are you drinking along with the meal? It's much of a dumbed down impact. Yeah. Which may also then if you were expecting the impact of alcohol may lead you to drink more, because I'm

Scott Benner 9:23
also that there might be people who are wanting to get to that spot too. It's a really difficult thing to talk about, because you're talking about it from the perspective of how do I do this responsibly? And I don't know that everybody starts an evening of drinking with that in mind to begin with, right?

Jennifer Smith, CDE 9:40
Correct. And you also have to consider like, i i much feel like if I and I've only been drunk a handful of times, I'm not a drinker. I I'm, in fact, I came I think the last time I was drunk was probably at my brother's wedding in Aruba. And that was a long time. And it was a lot of fun. But feeling drunk, feels very similar to a low blood sugar.

Unknown Speaker 10:10
Okay, those tip sees

Jennifer Smith, CDE 10:13
types of maybe that's not a symptom of yours, but I very much have a similar feeling with alcohol as well as with a low blood sugar. Yeah. So then comes into the equation, you're also already not really thinking very well, because you have alcohol on board. Is your symptom of being drunk? Also a symptom of a low that you're not paying attention to?

Scott Benner 10:38
Yeah. And how are you going to be able to handle that I'm so I'm just thinking of a person I met recently, whose son was away at college and was not a drinker, not a drinker. And then all of a sudden, one night just dove headfirst into it. And then this person had to, like, driving to a place to like, rescue the kid and take them to a hospital. Yes, you know, because then the next problem is, is that you're now around a bunch of drunk people, no one's gonna be able to help you. Like, you know, the, it's not like you have a designated, what if my blood sugar gets low person here? You know,

Jennifer Smith, CDE 11:11
right? I mean, it's the reason in college that I 98% of the time, I offered to be the driver, when we would go out. And I might have knowing that we are going to be out for a fair number of hours, I might have like, half a beer when we got there. And then I had nothing else the rest of the night giving it a good like four hours of clearance time to be able to be like the driver hole.

Scott Benner 11:39
I can say with confidence that in my life, I haven't had the equivalent of a case of beer. Like I just don't drink for no reason that I can particularly point out to you other than it's not interesting to me. It's just not a preference. Yeah, it's not for me, I I just I don't know, like, I don't even know how you like consume that much. Like, I have a bottle of like, flavored like peppy water here. Uh huh. And if I tried to drink this whole bottle, I'm like, Oh,

Jennifer Smith, CDE 12:05
I can't really be too much. Yeah,

Scott Benner 12:06
happens when you start putting, like hops and barley. And don't I be like, Oh, I'm so full. But yeah, but anyway, alright, I appreciate this. I know, it's, it's not an easy, it's not an easy conversation, because there's a lot of perspectives that didn't need to be taken to account. But I think in general, I mean, at least you could try to follow what Jenny was saying about decreasing your Basal. And, and, you know, I would add, you know, you gotta have I would want to have somebody there that understood my diabetes a little bit who wasn't drinking,

Jennifer Smith, CDE 12:35
but correct. Absolutely. And I mean, even people ask even about wine, you know, a glass of wine, typical table wine is somewhere between three to five grams of carb, per, you know, glass, should you cover that? I think a lot of it is also experience, right? What do you know about what has happened, and along with what you said, make sure somebody is there who knows, you knows you have diabetes knows how to help you if you don't seem to be acting, the way that you normally would be acting? Because all of those things very much like all of the things with diabetes in general, take a little bit of experimentation. And you have to figure out what works the best for you.

Scott Benner 13:17
Let me let you I know you have to go. But let me ask you this, because I think I remember that this is true. When I'm drinking. My glucagon won't work as well, right? That is, right. Yeah. Okay. So if you're thinking doesn't matter, if I pass out, I'll just use my glucagon, it might not help.

Jennifer Smith, CDE 13:35
It will. I mean, will it turn things around versus nothing at all? Yeah, but it's not going to be the same impact from what I recall. And I would, I mean, it certainly would look it back up, but I'm quite certain nothing has changed about the recommendations and what we know about your glucagon kit and alcohol in the mix

Scott Benner 13:56
together. Yes. So read the label on your glucagon if you're expecting it to save you when you're, you're drunk, because it might not be as impactful as you're hoping. Okay, Jenny, that somehow we made drinking sad, and I'm sure everybody oh

Jennifer Smith, CDE 14:14
well, people don't see us so they can't tell whether we're smiling or not.

Scott Benner 14:18
Having a great time talking. I'm like I just started thinking like we're taking the thing where people like oh my by Saturday night happy place. These guys are bumming me out. All right, well, thank you so much. G voc hypo pan has no visible needle, and it's the first premixed auto injector of glucagon for very low blood sugar in 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. Forward slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G Vogue glucagon.com slash risk, and the diabetes variable series began, I guess technically at episode 231 with the pro tip called diabetes pro tip variables, but then the variables proper began at 491 with trampoline followed by temperature travel, exercise hydration, food quality leaky sites and tunneling video games, stress masturbation school bad sites growth hormone sleep pumps like placement of full moon, diabetes, tech weight change, Walmart, the final episode, sort of the last episode menopause and today's episode, alcohol. Check them out. They're all available in your podcast player. We're at Juicebox Podcast calm. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#595 Plane to Maine

Barb is the mother of a young adult with type 1 diabetes.

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Scott Benner 0:00
Hello friends, and welcome to episode 595 of the Juicebox Podcast

the title of this one came down to the wire, I was between plane to Maine and give a hoot. I honestly don't even know what I'm gonna do when I'm done with this, when I go out and actually type the words into well, it's a lot of technical stuff that you don't care about, but where you see the title of the episode, I'm still not sure what I'm going to do. Today I'm going to be speaking with Barbie. She's the mom of a child with type one diabetes. She's got an interesting story about how her child was diagnosed, and a ton more. You're just gonna listen. I can't you know what I'm saying here, right? Like, I can't explain the whole podcast he in 30 seconds. It's, it was a long and winding road. I don't know what we talked about anymore. I just remember having fun and thinking, yeah, BB was good. 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. We're becoming bold with insulin. Don't forget in the show notes of your podcast player and at Juicebox Podcast comm there are links to all of the sponsors support the sponsors support the show.

This episode of The Juicebox Podcast is sponsored by touched by type one, they're absolutely my favorite type one diabetes organization. And I would like very much for you to check them out at touched by type one.org. They're also on Facebook, and Instagram. I also want to thank the over 300 supporters at buy me a coffee.com Ford slash Juicebox Podcast, just nice people who get motivated once in a while to buy me a coffee. It's a really kind thing that you do. There's like 35 members and over 300 people who have done it at least once. And I would love to thank each one of you in person. But since I can't, I'm just going to say it here. Thank you. Thank you, thank you very much. It's very kind. Your messages are extraordinary. The ones that you leave there buy me a coffee. Now I said the thing and you're going to buy me a coffee.com forward slash juice box, the messages that you leave there are just stunning and touching. And I very much appreciate them.

Barbara 2:31
I'm Barbara. I'm the mom of a daughter that has type one. And she was diagnosed last year. I'm also a registered dietitian. And we live in suburban Chicago.

Scott Benner 2:46
Nice. Okay, so last year 2020.

Barbara 2:51
Yes, right. I about six months into the pandemic.

Scott Benner 2:55
Oh, how old was how old? Was she? So?

Barbara 2:59
Yeah, so she was 10.

Scott Benner 3:02
Got it. I'm now making notes. My wife bought me this really cool little whiteboard.

Barbara 3:07
I heard about this. I'm trying to get one for my husband. He's a lawyer, but he likes old school legal pads. So it's going to be a big switch in our households.

Scott Benner 3:18
I've just so kind of sits in front of me while I'm doing this. And I can like so it doesn't make noise. You know what I sometimes I was like, I'd write stuff down on paper and it would be loud. So I can kind of make notes while I'm going in case there's something I want to remember to say which that's where it's become very helpful, because I'll think of a question. And if I can't, if I can't keep it my head, then I lose it. So now I'm just sort of like one wording, like jotting a word down and then coming back to it. It triggers it.

Barbara 3:48
That's so smart.

Scott Benner 3:48
No one told my wife what a good gift. This was.

Barbara 3:52
I don't want her to I might buy one for my husband.

Scott Benner 3:55
What are holding this over my head, but she will. Any autoimmune stuff in your family?

Barbara 4:01
None. Um, it actually you know, and I mentioned earlier that I'm a registered dietician. And honestly, even when I was in school, I didn't really learn about type one. So I mean, they, you know, with a section that we learned about in school, but we never really went into depth because we didn't see a lot of patients with type one. So it was sort of so far off my radar. How long ago was school? Um, so I've been a registered dietician now for 12 years.

Scott Benner 4:33
I was I asked because I'm wondering if you remember what they said about diabetes. While you were

Barbara 4:39
I want you to it's so interesting, because I have a visual in my head. You know, like one of those choking posters, where I'm, you know, like, you're talking about, like excessive thirst. Yep.

Scott Benner 4:53
I know what you're talking about. My daughter's had there was one hanging in my daughter's school that was about signs of hypoglycemia. They're all just like different, different cartoon faces with different levels of like, like horror on there, do you know?

Barbara 5:08
Exactly, exactly. So that that was sort of like the visual that I had in my head. But it wasn't something that I, you know, we didn't even know anyone at the time that had type one

Scott Benner 5:19
in the schooling didn't go deeply into it.

Barbara 5:23
It didn't go deeply into it.

Scott Benner 5:25
Okay. Well, that seems to be about par for the course. But I assume to that course, or I didn't mean these course twice, but your dietitian, that situation or even being a nurse, it's everything's an overview, you're not deep diving on anything until you get into a specialty, I guess.

Barbara 5:42
100% and, you know, I'm in private practice. So most of what I see is weight loss, or sometimes weight gain or healthy eating. Um, occasionally, I see autoimmune conditions, but they're, you know, they're, they're fewer and farther between,

Scott Benner 5:58
Do people ever come to you for to get like a food out of their diet, like somebody comes along and says, I'm celiac now. And I need to know how to transition to it. Do you ever get that kind of question?

Barbara 6:09
100%. And, you know, actually, I don't know if it's a coincidence. But I, you know, been seeing more clients that have autoimmune issues right now. And there are a lot of elimination diets that are now very common, you know, trying to find certain things that trigger inflammation. So I feel like I'm dealing with that a lot more

Scott Benner 6:31
people trying to get rid of like psoriasis, stuff like that. Exactly. Yeah. Wow, that's interesting. I wonder if you're seeing it more. Or if it's like, when you buy a new car, and then suddenly you see them on the road everywhere.

Barbara 6:44
I mean, 100%, I also have to say, since the pandemic, I've been really busy, because I feel like a lot more people have been home. So people are taking time to do things like, you know, figure out their diets and, you know, do more things for self care. Yeah. So it might just be just the sheer volume of what I'm seeing.

Scott Benner 7:06
I guess, when you get extra time, when you're not doing all the things that you used to do. You lose the excuse of like, oh, I would, but I don't have time now you're like, Oh, darn, I have time now. I'm gonna have to just keep telling myself that I guess.

Barbara 7:21
Exactly.

Scott Benner 7:24
Okay, so she's diagnosed at 10. Can did it come on in the classic way did you have like, you know, were you on an airplane over the Atlantic Ocean? Because I mean, pretty,

Barbara 7:34
pretty much had to get on an airplane, not over the Atlantic Ocean. But um, you know, when when COVID struck in March, my girls, you know, had sort of been home and my daughter was dying to go to camp. And her sleepaway camp was one of the few camps that were running. And we were a little bit nervous to send her but she, she begged us to go. So, um, that camp said that they were taking every precaution, you know, to prevent COVID, including, I think, three tests right before she left him, he had to do like a temperature check for a week. And so we decided to send her and she actually got on a plane and went with another family to camp. And about a week and a half into camp. I got a text message from one of the directors of the camp saying that, you know, she wasn't feeling well. She had thrown up a couple of days before. And they said that they had given her a couple of COVID tests, and it was negative. They also asked if she had a history of eating disorders because she was restricting her food. So I got, you know, very concerned. And I asked to speak with her on the phone. And I spoke with her on the phone, and I could tell that she really she was sort of slurring her words, she was crying a lot. So I very quickly hung up the phone and FaceTime her. And I noticed that she just she really didn't look well, she had lost some weight, which, you know, it ended up all the information kind of came out later, she had lost about 13 pounds in the matter of a week and a half. And my first reaction was just to tell them to take her to the emergency room. Because, you know, we were so far away. It it's i i Like I didn't know what to do. So the first thing that I could think of was just to have them take her to the emergency room.

Scott Benner 9:42
Can you say a little more about how it felt to be that far from her when she was struggling?

Barbara 9:48
I mean, it was there were so many factors in place. It was so hard. I mean, I think you know, any parent that sends their child to camp whether the camp is you know, a couple hours away or in this case You know, 20 something hours away, if to not be with your child when they're not feeling well is very, it's it's so difficult you just, you know, you hope that they're in good hands. And at the time, we felt like, you know, she had all this stuff going on and she wasn't in good hands. So that was that was really hard. And then, you know, when she finally you know, was was receiving care, I couldn't get a flight. Because you know, remember, it's about six months into the pandemic, so people weren't really flying.

Scott Benner 10:33
Yeah. Well, how far was she from you? Like states away? Or

Barbara 10:38
she was states away. So where, you know, we're in suburban Chicago, and she was in Maine. Wow. So and if you think about that, and she's kind of in rural Maine, so the closest town being Portland, which is still you know, a distance. So it was not easy to get to? And had I driven I mean, it would have taken longer than just waiting until the next day to get a flight.

Scott Benner 11:00
Yeah. Did they try rubbing seafood on her? Were they using all the main tricks? I wonder?

Barbara 11:06
No, you know what, it might have been better than what they were doing? Because, you know, later it turned out that they were giving her Gatorade, because she, you know, she wasn't eating was refusing to eat and vomiting, which I mean, you can only imagine Gatorade to the stage she cannot look at Gatorade

Scott Benner 11:22
was Did that happen at the camp? That happens at the camp? Yeah, well, camp. I mean, counselors are not, you know, they're usually younger. Right?

Barbara 11:31
They are. And, you know, they had it, you know, sort of a strange set of circumstances, because it was COVID. Normally, they get a lot of foreign counselors that are a little bit older. And because people weren't traveling, you know, I guess like with the travel visas and stuff, they ended up with a bunch of younger counselors from the US. And I just felt like, weren't really well trained,

Scott Benner 11:53
well, weren't well equipped for the dogs diagnosed type one diabetes. That wasn't on their to do list either. Plus everyone. You know, when you really look back, everyone has to be freaked out right in the beginning of COVID. And now there's this kid that's super sick. You know, everyone's looking at her going like kids got COVID

Barbara 12:13
100%. I mean, she said she had something like five COVID tests. And you know how unpleasant. I mean, I was very fortunate, I got vaccinated before I needed a COVID test. But they, you know, they the swamp goes all the way up your nose. And my daughter said it felt like she was drowning. And they did five of that.

Scott Benner 12:31
Yeah. Because they wanted to prove she had COVID. So they could put her somewhere and be done with her. And they and they didn't know what to do. And well, that's, you know, I have a tiny bit of a similar, similar situation. I mean, not similar with diabetes, but my son was in Florida playing baseball with his college team. And I was there watching, and he got sick. Like, right as and it wasn't like into COVID. It was like, those couple of weeks. Excuse me, like, you know, when I think mid March is when everyone kind of came to like grips with like, Oh, this is a thing, and I'm gonna go into my house now. So this was like, this was like, the week before that. And it's just rumblings like, you know, you still hear people saying, like, did you hear on the news, there's a thing, I wonder if it's gonna be a problem. Like it was still like that. For most people, and my son gets a viral infection while he's there. So. So luckily, that what he had was treatable with antibiotics. And you know, so I might not have met viral infection. I'm not exactly certain. Obviously, I'm not a medical person, but he got something that was treatable with antibiotics. And but as soon as he got sick, people backed away from him, like he was on fire. I, you know, and then we got the antibiotics into him, and it made him better very quickly. And then you had to basically go from person to person to go listen to antibiotics don't work on viruses. If this was cool, he wouldn't be getting better. And then you're counting on people knowing that that's true. And it was just everybody was at to arm's length from them. At that point. It was very first. Yeah. So I can see that happening for certain to your daughter as well.

Barbara 14:17
Yes. And, you know, there's this added dimension of her being at an all girls camp, and there being some drama. I think, you know, one thing that COVID has sort of done is it's made everybody a little bit, I don't want to say anti social, but you know, these were kids that were basically you know, at home or homeschooled on their devices since March, and all of a sudden, you know, they're away at camp with a bunch of other 10 year old girls. So there was there was definitely an element of girl drama. Um, and they kept, you know, citing girl drama as an example that she was restricting her food. So it was just so many different things at once. It was very overwhelming things

Scott Benner 14:59
started getting confused? Yeah, yeah, they were pointing at one thing and thinking it was something else. And yeah. Did the girls back away from her? Did she experience that?

Barbara 15:09
Yes. Because, you know, she had vomited a couple of times, which is often a sign of DKA. And everybody was so freaked out because that's also a sign of COVID. So there were some girls on the bunk that were kind of taunting her saying that she had COVID. I mean, you know, it was a lot. Yeah,

Scott Benner 15:27
no kidding. That sucks. How long did it take you to get to her day?

Barbara 15:32
So it took we found out so I got the text from the camp director, I want to say around three in the afternoon. And she basically I don't want to throw anybody under the bus. But she said no rush. But of course, you know, as a parent with a child multiple states away during this time, I called immediately. Yeah. By the time they finally got her to the emergency room is about 5pm. And so when I got the call from the emergency room, my husband was simultaneously looking at flights. So the next flight that I could get was 8am. The next morning,

Scott Benner 16:11
were you on your own private plane? Was it that part of COVID?

Barbara 16:15
I wish I could have you know,

Scott Benner 16:17
I don't know. I don't mean, can you afford a private plane? I mean, were there not only people on the flight?

Barbara 16:22
Oh, there was no, there was hardly anybody on the flight. I mean, it was I had like two rows to myself.

Scott Benner 16:29
Yeah, we flew home when I flew home from Florida. I was on a flight on a on a full flight with like nine other people. So like, I mean, like a giant plane with nine other people. We were just spread out as far as we could. People are like laying across three seats. It was the most comfortable I've ever been flying in my entire life.

Barbara 16:48
So funny. And I feel like that just changed very quickly. Now, back to being you know, pre pandemic levels.

Scott Benner 16:55
Yeah, no, I was on a plane. It's June. Now when you and I are talking, I just was on a plane. And it was it was packed. So yeah. But okay, so she goes, they finally you tell them to take her to the emergency room. So is she diagnosed without you there? Alright, this is a super short ad break, just reminding you to go to touched by type one.org. It's a wonderful organization doing things for people with type one diabetes, touched by type one.org. The one is a one like the number one, right so like, touched that's to I'm not gonna spell touched for you. And then by and then type and then the number one.org touched by type one.org. They're also on Instagram and Facebook. And you will spend no better few minutes of your life today than if you check them out. Touched by type one.org touched by type one.or Whoa, whoa. I don't know if I've ever done this on the podcast. But since I mentioned the buy me a coffee link at the beginning of the episode, I want to tell you that I'm sitting right now in an incredibly comfortable, well built and supportive chair that was bought for me pi to people who listened to this podcast. And it changed my life this year. An expensive chair is not something I would have spent money on on my own. Tiny little story here is that at one point on Facebook, someone just kind of got the idea. Like they want to do something nice for me. And that's how this buy me a coffee thing got started. And before I knew it, there was so much money being put into it. I mean, I don't know if it's buy me a coffee. It's just kind of a name. Like, I don't actually drink coffee. I assume you understand that. Anyway, I just was so grateful. And they had this money now. And I didn't know what to do with it. And so I said to people, like I can't just like I don't want to just put this money in my pocket. Like I want to do something for the podcast, I want you guys to get something out of it. And some kind people asked what I needed. And I just said like, you know, a more comfortable supportive chair would be a big deal. My back feels so much better than it used to. I spent a lot of time sitting in this chair, making this podcast for you. Anyway, it's a weird little thing that just never thought would happen in my life. It's odd and nice. And I don't know. You'd have to be in my shoes to know what I'm talking about to see a bunch of people, like hundreds of people come together and say, Scott, I want you to be more comfortable. Take $5 and buy yourself a chair is really like one of the more surprising and lovely things that happened to me this year. Anyway, if you want to do it too. I mean, I'll take your money. Buy me a coffee.com forward slash Juicebox Podcast. It is really just a kind of a superfan thing to do, I guess but it means a lot to me. So thank you very much

Barbara 20:05
She is, and I just I don't want to forget one thing because I think we have, um, oh, yes.

Scott Benner 20:12
No, I'm sorry, whatever you want to say go ahead, go back to what you were thinking we,

Barbara 20:16
we, we have a little bit of an interesting connection. So one of the things that I did after I spoke with her on the phone, so they handed me the phone to speak with her. And I very quickly switched the phone to FaceTime, right, just so I could get a look at her. And once I had a look at her was when I insisted that they take her to the emergency room. Yeah. But this is kind of like, you know, Post story. But um, months later, my husband had a friend that told him that he should write to Tim Cook. And tell him basically, that FaceTime saved our daughter's life.

Scott Benner 20:54
Well, at the very least, it it let you look her in the face. Right. And then there's a lot to be inferred from that.

Barbara 21:01
100% Yeah, I mean, I took a look at our NGBs big dark circles under her eyes. And she just she looked terrible. And she couldn't even sit upright, and she said her stomach hurt. But anyway, I my husband, and I had this little contest where he wrote Tim Cook. And he you know, and I will come as well. But my husband said that his letter was, you know, sort of more concise and to the point. So, I was like, Okay, fine. So my husband sent a letter months later, we don't hear anything. And so I sent my letter. And literally within 24 hours, I got a letter back from Tim Cook, thanking me for my letter, and saying that it's stories like mine, that you know, make them go on and do all the things that they do, but

Scott Benner 21:44
more importantly, approved that your husband's letter suck. That really is the most important part. You know, it's funny. You said a minute ago, you're like, we have this interesting connection. And I was like, Ooh, me and you.

Barbara 22:00
I thought you had some kind of Apple story. I do. Yeah. And I own story. Yeah,

Scott Benner 22:05
yeah, I do. When the first iPhone came out, I mean, the very first iPhone, I got one, back, then you had to stand in, I stood in an alleyway behind a cellphone store for hours to get it, actually, with Adam, who's the doctor who came on and talked about COVID a lot during COVID. He and I just stood behind an iPhone store for a couple of hours and got our phone. Anyway, I was migrating my pictures onto it. And it was super excited. And I know that's hard for people to believe now. But having a handheld device that would hold your photos or the even could have your calendar on it was unheard of at that moment. Like it just didn't exist, like in a real functional visual way. And so my wife was leaving for work one day. And I just stopped her to show her and she's like, I have to go and I'm like, no, no, look at this. And I only held her up for 30 seconds. You know what I mean? Like she she was had to get out the door. And as she drove down our driveway and then pulled onto the street, only a few seconds ahead of her a tree fell across the road, like this big branch from this tree like this giant branch that would have like, easily crushed anyone's car. And I was like, oh my god, I saved your life by showing you my iPhone. And, and I wrote that. Adam, actually I wrote it up in an email and I sent I shared it with a couple of friends. And Adam was like, send it to Apple. And I did. And maybe a few weeks later, I was contacted by a law firm in New York, that wanted me to sign an NDA before they would continue to have conversation with me. So they reached out to me and said, Hi, we'd like to talk to you about something we can't tell you what it is. If you sign an NDA, we'll tell you why we're contacting you. And I was like, I am fascinated. So I did that. And it was apple. So I got flown out to Los Angeles, me and about 30 other people. And we were we made each of us made iPhone story commercials. And I think they picked six of them that actually made it on to television. Mine did not make it onto TV, and I still made like $11,000 I got a week off and got to go make a commercial.

Barbara 24:15
That's amazing.

Scott Benner 24:17
But I don't think I was tall enough. Or I'm not sure exactly what I wasn't enough of. But, but mine didn't make it was still an amazing experience, though. And it was from doing that. I don't know if that stuff if anybody would even remember those. But there was like, like, I'm an airline pilot, and I use my iPhone to check the weather before I get to the airport. Like it was super simple stuff like that, because the phone didn't really do very much. Without apps, like really think about your phone without an app. It's useless. And then there was no app store really. So anyway, that's yeah, that was it. You didn't get to go to Hollywood like I did, though.

Barbara 24:58
No, no, my Sorry, in a very different editing.

Scott Benner 25:02
Just got the mock here has.

Barbara 25:05
Exactly. You know who is gonna write all the letters in the house?

Scott Benner 25:08
Well, I mean, also who's gonna shut their mouth? I would think. So how did she was there someone with her in the hospital for the first hours? Yes to get there.

Barbara 25:21
So. So basically what happened, you know, as I mentioned, it was sort of rural Maine, and there wasn't a major medical center, but because she was clutching her stomach, they thought maybe at the very least, she needed a sonogram. And this one hospital that was near the camp didn't have that kind of technology. So they thought that they were going to transfer her to a bigger Medical Center. But when she arrived at the first emergency room, they did one of the nurses thought to do a finger stick. And when they did a finger stick, they found out that her blood sugar was 600. Well,

Scott Benner 25:57
oh, so then they get her go. And where was she by the time you got to her? What state? No, she

Barbara 26:02
was she was in Maine. She was in Portland. I didn't

Scott Benner 26:05
mean like that. I meant, like, what state was her health in? Sorry, as I, as I said that, I realized that I like that.

Barbara 26:12
So I guess at the time, what the, what the the nurse said to me was that she was she she basically said, you know, we just did a finger stick. And she's in something called DKA, which I actually had to Google. And she explained that, you know, it's often when children get diagnosed with type one diabetes, she explained how high her sugar was. And this was like, you know, like, in those movies, when, you know, people are listening to their doctor, and their doctor tells them that they have cancer, and they just they don't hear anything. So my husband was sitting there while I was on the phone. And I felt like he was sort of googling so we could, you know, figure out what was going on. It was just very overwhelming.

Scott Benner 26:58
Yeah, no kidding. Okay, so she, how long was she in the hospital.

Barbara 27:03
So she was in the hospital for three and a half days. So she was in the ICU for a couple of days, I guess the standard protocol is to very slowly bring the blood sugar down with insulin. And what they basically had to do is, since she had to be transferred from the rural hospital to the major medical center, they had to give her an insulin drip in the ambulance as she was going. And they mentioned to me that there were, you know, slight risks involved, which is, you know, just another thing that and terrified me. And so when I arrived, she was in the ICU.

Scott Benner 27:42
So when when, when she gets cleared to leave the hospital, I'm assuming you're getting right on a plane.

Barbara 27:50
Yes. And that was that was terrifying. Yeah. Because I basically went, you know, they won't allow you to leave the hospital with a child that has type one unless you've gone through the education piece, so that I know how to give her insulin. So I left the hospital with needles with insulin. I mean, it was like I, I had to navigate, you know, having a child that could barely walk because you know, as I mentioned, she lost 13 pounds, she can barely move. And I had all of this stuff with me.

Scott Benner 28:23
I couldn't bring myself to leave the parking garage to make the 30 minute ride back to the house. We were staying in. Like, and we were in the hospital for five days. We were so scared to leave the hospital. We left the hospital, went downstairs, went right into the cafeteria and had lunch, because I think we didn't want to leave the building. Yeah. And it was terrifying. Yeah. And then you had to get on a plane. But did you? Were you in that like ignorance is bliss thing? Did you not know enough about it to be like, like, properly terrified? Were you just terrified of the big like the specter and not of something specific? Well, I

Barbara 28:59
feel like I had two bad options, right? Because I definitely didn't want to leave the hospital. That's for sure. I mean, it was so uncomfortable. And I barely slept. But I definitely felt safer in the hospital. But remember, we're in Maine. And so my other option was to stay in a hotel overnight with her, or get on a plane and at least be home and have the support of my husband. You know, we know some doctors. So it was like it was almost like what's better, you know, so it was terrifying to be on the plane, but I also didn't want to stay overnight with her in a hotel, if that makes sense.

Scott Benner 29:34
Yeah, no, that trust me, that all makes sense. I'm fascinated by that idea that, that you had to be thrust like it wasn't just a quick ride back to the house. Yeah, you know, that that was really something so you made it obviously. Because yeah, you've made it back. Most of your fears, unfounded, did you have any trouble?

Barbara 29:54
Well, so we have this one crazy thing in that airport. So When my daughter got, you know, transferred to the hospital from canopy center with a backpack, and I didn't really think to look in the backpack before we got to the airport. So as I'm taking her through security, and my daughter sort of goes through security first, we find out that one or she has this water bottle that she really likes, and it's filled. So they made me get out of the security line, and go into the water bottle and then come back. And she was already my newly diagnosed type one daughter's all the way on the other side of the metal detector. And I had to leave her so that was a little bit panic inducing.

Scott Benner 30:39
Did it feel see that's interesting for people to understand like you What did you walk away from her 30 feet, and it felt like you were leaving her in another country? Right?

Barbara 30:48
100% I was just terrified. I,

Scott Benner 30:51
I can relate to that idea. Like, I can't walk away from her. Like I have to stand right here in case something happens that that Yeah, I thought you were gonna say that there was like a fishing knife in her bag or something like that, that you guys were up against the wall.

Barbara 31:05
I mean, the irony of the whole thing, it was a filled water bottle. So like I felt like she needed the water all along in camp when she's getting Gatorade and then ends up having to empty it out at the airport.

Scott Benner 31:19
Finally, we've got the right thing in our hands, and we're dumping it away. But that feeling of like even being separated by feet in that situation? Oh, I definitely know what you're talking about. I have had that, like, I have had that exact thought, like I have to be here like right next to her tech. How long did it take for that feeling to go away? Or has it not?

Barbara 31:38
I know, it's gotten better over time. You know, as we've started to give her more and more independence. I mean, she's 11. Now, I kept her remote this year for school, you know, because it was a new condition because of COVID. We just sort of wanted to get a handle on her blood sugar and having her home was the easiest way to do it. So as we've had her home, and we've been able to manage things better, we've started to give her more and more independence. And also, you know, she has a Dexcom. And that's huge. I feel like she can be feet away from me. And I can see what's going on with her blood sugar and texture if I feel like you know, it's going too high or too low. So that's I mean, that's a game changer.

Scott Benner 32:21
I'm really very new to this, though. It's interesting. Yeah. Is it going anywhere near how you hope?

Barbara 32:30
I mean, we're definitely trending in the right direction. The past couple of doctor's appointments, her hemoglobin a one C has been a 6.70. Good for you. Down from 13 when she was initially diagnosed,

Scott Benner 32:44
that's a nice sleep. I know I it's funny, I feel stupid saying this. But did you have like a focus for coming on? Were you did you? I don't remember. I don't really?

Barbara 32:56
Oh, yeah, I think my you know. It was like sort of twofold. Number one, you know, right before we sent her to Cam, she had a full physical. So when she had a full physical, like, we thought everything was fine. And she was perfectly healthy. And we were able to send her halfway across the country. And literally within a week and a half of being gone. She ended up in the ICU. So my husband and I had this moment of, you know, well, something should have been done in the pediatricians office, like there should be this like universal standard of care where they at least to a finger stick, because they don't really take blood work from children. So unless like you see the signs and symptoms of something going wrong, there's no reason for them to even look at blood work. whereas adults, you know, have physicals every year, and they take blood. So I think I was just I feel like, I would love at some point for pediatric practices to adopt this. You know, just like, easy finger sticks, get a baseline, you know, what's going on with the children because it really would have helped us so much.

Scott Benner 34:19
Did you feel like you paid to rotate your tires before a road tripping out a flat tire anyway? And then 100%? Yeah, and then you felt like, Oh, I did everything I could do and they still didn't? Well, I mean, so I'm not going to disagree with you. And but I would say that I think this might be a thing, that if you wait five years and think back on it, you won't feel similarly. I'm not certain and there's no way for me to like, I mean, we could put on our calendars, I guess and reach out to each other. But I think that when you're first going through a diagnosis in the first year or so, it there is that like there are a lot of feelings that are similar What you just brought up like somebody should do something, there should be a way to this whole thing except they think maybe there isn't. You know, I mean, I don't disagree with you that you could fingerstick every kid on the planet, and maybe you'd catch some of them with a high blood sugar. I'm sure you would. But if you look at that, from the perspective of people who never get diabetes, I bet you hear them say, I don't, you know, I don't want you to finger stick my kid. Like, I wonder how much of that like becomes perspective? Because of what happened to you. But I don't disagree. Like I mean, it's an incredibly, I think, at the very least, when kids come in with flu like symptoms, they should check their blood sugar. Yes, you know, for certain, because they're, you're definitely going to catch some kids and keep them from getting, you know, into decay or deeper into it. But I do know how you feel like, is that a, is that a helpless feeling? Like I don't I like to dig into the psychology of it a little bit like this, like, does it make you feel like, nothing's within your control?

Barbara 36:04
It definitely does. But also, I think I think about it a little bit differently, too, because I feel like you know, sometimes, like in the first year of a diagnosis, you have all this kind of fire underneath you. And you feel like that's when like you want to see changes made. Um, and so it keeps me hopeful in a way. Because I feel like maybe at some point, it will be a standard of care, because you're hearing about more and more type one. diagnoses, someone sent me a study recently as related to COVID that they think COVID might trigger type one.

Scott Benner 36:42
So I do I want to be careful when we say that, because I think what you're going to find is that it's not that COVID gives you type one diabetes is it COVID puts your body in a instruct in a stressful situation. You very likely had the markers for type one diabetes already. And this is the thing that yes, propelled it. I know, and to say, and to say COVID triggers type one is, it's like a headline statement. That absolutely is it's, I understand what you're saying it's true. In content.

Barbara 37:13
It doesn't explain that. Yeah. specific mechanism. Yeah, of course. Yeah,

Scott Benner 37:17
yeah, you don't magically get diabetes, when you get COVID, you are a person who has anybody's markers that are making you making it clear that you are going to get diabetes, at some point, something throws you into that situation, could be anything really

Barbara 37:33
100% And you know, the fact that you know, a hemoglobin a one C, you know, it's a measure of your blood sugar over the past three months, the fact that when they did it in the hospital, and hers was 13, and meant that her sugar had been running high, you know, for a month before she ended up at that point. So, you know, there's there's a certain elements of Oh, my goodness, you know, she was complaining about headaches. And we thought, well, she was spending a lot of time on the screens and wasn't wearing her glasses. So you know,

Scott Benner 38:03
no, yeah. Oh, it's the worst. Listen, the first time in your life, especially attached to your children, that you recognize that we're all on a rock, hurtling through space, and nothing, right? Nothing happens for any reason that that you can figure out like, it's a, it's a hard thing to swallow that, you know, your decisions don't lead to ultimate safety, I guess. Yeah, like, you know what I mean, like you, you get what I mean, I was very careful when I was a kid, I grew up really broke. And I looked around, and I thought I have to establish credit. So I remember getting a credit card to Sears and buying something just so I could pay it off. So that I can start building credit was only like 18 years old. Right? And that made me feel safer. And my home makes me feel safe. But the truth is, if like three ill intended people wanted to get into my house right now. They absolutely could. But I feel safe. And you know, I try to get a house in the nicest neighborhood you can so you can feel safe. So you can feel like you're sending your kids to good schools. And it's all true, right? Until, you know, a meteor crashes into you. And then you realize that none of this had anything to do with you. You were just getting lucky the whole time. Right? I mean, and it's a hard pill to swallow. Like as a as a person who cares about another human being and you're trying to keep them healthy and alive. To realize that something random could happen. I heard someone say recently, I was listening to an interview somewhere. And the man had had a near death experience. And he said that what stuck with him most when it was over was that you could be talking to somebody and an hour later they might not be here anymore, and that there's no way to know that's gonna happen or not happen. And that he found it frightening and freeing at the same time. So I don't know it just made me think of that when you when you were saying that because I completely understand the idea of wanting to create as good Have a situation as you possibly can, and yet not losing sight of the fact that, you know, random things happen. And sometimes people are in the way of it. It's, it's terrible. I mean, don't get me wrong, it's that's not how that's not what should happen. But I mean, for me, I always kind of go back to this feeling of, if you could go find me right as I was getting ready to have my first kid, and you and somebody came, I don't know popped out a space in time and said, Look, you know, you're gonna have two children. And, you know, here are all the health issues that are going to happen for your wife, as you get older for you, as you get older, for your son for your daughter, like, you're gonna have a car accident one day, like, you know, all this stuff is going to happen. You can't stop it. I don't know if I even would have believed it. Because when I was young back then I just thought if I make good decisions I'll put are in good positions and will have good outcomes. But, you know, then a girl hits you in the bumper when you're waiting at a stop sign and you realize she's on a different path than you are. And now suddenly, you're in her way. So I don't know. It's a It's frightening. The whole thing? Do you have your other children too?

Barbara 41:12
Yeah, so I have a younger daughter as well. Okay, so an 11 year old and a nine year old.

Scott Benner 41:20
Do you have concerns about diabetes for them?

Barbara 41:22
Well, so um, I think I heard about it on her podcast, but um, T one D exchange. Um, you know, they have a whole database, but they also offer blood tests. So you can test everybody in your family to see if they have the markers for type one as well. Trial net. Oh, try on that. Sorry. Try

Scott Benner 41:44
that. Okay. Listen, pimp everybody out. That's been on the show. That's fine. Thank you. May I will watch

Barbara 41:50
this. We've been on the pod two and we're obsessed. Bob,

Scott Benner 41:54
do you want to see something that you might find creepy, but a little interesting. Watch this. Yeah. If you just go to T one D exchange.org. Forward slash juicebox. Now and you're a US resident who has type one diabetes, or a US resident who's the caregiver of someone for type one, you can join the T Wendy. Registered T one D exchange registered? Well, it's easier when I can edit it, doesn't it? Hold on a second? The you will be asked a few simple questions. None of them are deeper probing. It's 100% HIPAA compliant, completely anonymous. And your answers will help other people living with type one p one the exchange.org forward slash juicebox it's not bad right. Now. I could do those in my sleep. I love the T one D exchange and what they're doing but try on that is where is that? Yeah, yeah, you can get checked for the marker. So you did it for your, for the other?

Barbara 42:45
Yes. So I did it. Um, and then my husband, I think you can for trial that you have to be 45 under so my husband, he's 52. And so he he did it through I think JDRF offered something to I believe we've all tested. I'm sorry.

Scott Benner 43:06
I know. JDRF is like it cost like 50 bucks and trial. It's free or something like that. Right?

Barbara 43:11
Yeah, but trial that you can only do up until age 45. So we all tested and none of us had the antibodies.

Scott Benner 43:18
Oh, that's cool. Now, I think trial net isn't retesting any more if you get no antibodies. But I think that I they used to I wonder if that's not a financial decision on their part because they're, they're funded by other people. Whereas I guess you can always buy it through the JDRF. The one they're doing Yes, yeah. I think trial that might end up being a sponsor at some point. I feel like I remember having a conversation with them a couple of weeks ago.

Barbara 43:50
Well, if you want me to pimp out on the pod, we actually did the free trial through the Juicebox Podcast. Oh, no.

Scott Benner 43:58
Thank you. Did you get the free no obligation demo? Or did you get the free 30 day trial of the Omnipod dash?

Barbara 44:05
We got the free trial of the Omnipod dash?

Scott Benner 44:09
Oh, you did 30 days? Yes. That's cool. Listen, let's just remind everybody that their advertisers, but this isn't an ad, but I want to know how that went. So you contact them, because I talk about all the time, but I've never done it, obviously you contact them, they get you out 30 days worth of pods a PDM. get you all set up and going to get this app to go through your doctor does it just straight does.

Barbara 44:32
It does because I think they want to make sure you know if you're making that kind of a commitment that you'll be able to continue with it. And initially it wasn't covered by our insurance, but we heard so many positive things about it that we said you know, we'll try it. And then honestly, I think we paid for one month out of pocket and then our insurance decided to cover it. So it worked out.

Scott Benner 44:57
Yeah, that's excellent. No wins on the pod.com forward slash choose people support the podcast. What are you doing? I got a I have bills to pay to. So that's really that's really cool. I love on the pot. I mean there Yeah, sponsors because of how I feel about them. I could have, you know, I'm sure I could have gotten an ad from a different insulin pump. But this is the one that I I've seen a ton of benefit from for Arden. And it's been like a real like, like, genuine like, help to us over God over a decade now. So I'm glad that you got it and that you like it. That's very cool. How do you find the podcast?

Barbara 45:38
Um, oh, so I had heard, I initially found the podcast by the woman, I'm going to give her a huge shout out. But she has type one, just the woman who does my eyebrows of benefit. And I had actually, I brought my I had brought my daughter with me. Um, and we noticed that she was wearing a pump. She had the Medtronic pump. And so I like gently talked to my daughter. And I said, look, look, she has a pump. And so then my, my daughter said to her, I have type one too, and they got into a whole conversation. And I feel like I'm just going to get my eyebrows done more often than I needed to because she was such a great resource. But she was initially the one that told me about the podcast.

Scott Benner 46:27
I love hearing how people find out from each other. That's so so interesting to me. And I and I have this visual of your, your, your brows getting thinner and thinner. And you're like, I hate how my brows look now, but this girl knows so much about diabetes.

Barbara 46:43
Actually, the opposite sort of happened. I actually over time told her to do less than less. And it was more like therapy for me just like sitting there and getting all of her tips something because I think she's in her 30s and has diagnosed in her teens

Scott Benner 46:59
that I'm smiling very big. Such a big smile from that. That's, that's very, very cool. Also, if people are interested, Arden gets her brows threaded. not last. So if you have a threading professional around, you should try it. It's fascinating. Really, really cool. Like just I've ever seen anybody do it.

Barbara 47:20
Yeah, I've had it done before. Okay, um, but I think I can never switch because this is like, I mean, I feel like I learned something every time I go see her and my brows look good.

Scott Benner 47:30
So ask you this. I'm gonna admit this on the podcast. The person who cuts my hair is fine. But I don't love what she does. And I want to switch to another person that the place buy feel too bad to do it.

Barbara 47:45
I think that's a tough one. But I you know, it depends how long they've been working in the business because I feel like they ends up developing a thick skin because it must happen all the time. People think

Scott Benner 47:57
there's this guy in there and I just want to see what he's gonna do with my hair. That's all and I find myself thinking, this is gonna sound crazy. I find myself thinking maybe I can figure out what days my person works and get her and get an appointment on a day when she's not there with the other. You know, I don't borrow, generally speaking don't care about stuff like this at all. And this one thing, like even Arden's like, just tried the other person. I'm like, I can't like she's so nice. I don't know. I don't know how to do it. I feel terrible. I just have to do it. Alright. Yeah, I don't know how we got on this. Like how my brain jumped to this, but I think we're talking about gourmet. No, no, no, I know how we got to it. I'm just like, I don't know why I talking about it now and admitting to everybody that I want to switch hairdressers, but I'm scared to hurt someone's feelings. I really want to this guy looks like he would do such a better job. I don't know why. But anyway, it's not a gender thing. He just seems that. I don't know. I have really great hair. Barb is something you don't know about me needs a pro touch. You know what I mean? Anyway, yeah. Well, so how do you think your daughter's doing? Like, a year into it? Are you pretty comfortable? I mean, the numbers sound great. Sounds like you guys are getting a handle on everything. But I mean, how was she doing personally?

Barbara 49:20
So I, you know, she has her good days, on her bad days. You actually had a podcast recently about mood and blood sugar. And we definitely see that with her, you know, because as like, the pump is relatively new for her. And we're constantly you know, adjusting her doses and stuff. And, you know, like, every I feel like, all the stuff happens in a year, like all the freak technology stuff, like, you know, we put the Dexcom and the Dexcom falls off or like we put the pump on and it's a bad site. So, you know, it's like we're still a huge learning curve. And I feel like that definitely affected her, I would say, you know, she's not ready to deal with it yet. Um, and maybe partially like the trauma of the diagnosis. I mean, she's interested, you know, in one on Bolus thing, her and she, you know, she she asked a lot of questions, but I would say, you know, I'm still like her external pancreas. I'm still, you know, I mean most of it.

Scott Benner 50:25
Yeah, that's not gonna end anytime soon. But no, but so when you say she has good days and bad days, what's an example? Is that an example of her feelings? Or is that an example of things going better, so the day goes better?

Barbara 50:40
I think it's full. You know, sometimes like when her blood sugar's and like, great range all day, she'll say to me, Mom, I'm having a great day, I feel great. Um, and then other days, when it's a little bit higher, she'll say, I don't feel so good. I just feel like I have no energy. There's also, you know, a little bit, and a lot of this, you know, I guess happens in the beginning, where, you know, her sister will eat something like, ridiculously sugary, and she'll say, Well, I can't have that, or, you know, you're gonna have to give me so much insulin for this. So like a little bit of resentment toward her sister that doesn't have type one. Um, but we've been able to get her some help, which I think has been huge. I think it's, you know, it's sort of part of the process of going through this. Yeah,

Scott Benner 51:29
she's talking to somebody. Yes. Yeah. That's good.

Barbara 51:33
I mean, part of it is, you know, the whole trauma of how she was diagnosed, that was huge. So it's like, she had that on top of COVID. You know, and then her diagnosis. So it's, you know, there's a lot

Scott Benner 51:47
do you think when you say, resentment towards her sister, do you think it's towards the person? Or do you think it's towards just anybody who can think it's just because that person's there in front of them?

Barbara 51:58
I think it's because she's there in front of her 100%? Yeah.

Scott Benner 52:02
Do you see it translate to other aspects of life? Or is it mostly around food and accessibility to eating when you want those sorts of things?

Barbara 52:14
I think it's mostly related to that, because, you know, it's always funny, you hear these stories about kids that are like tears at home and the teacher say that they're like, complete joys, you know, I think she like rains it in and all the other areas, but when it comes to her sister, that's sort of when it comes out a

Scott Benner 52:32
lot. Yeah. That Do you think that sisters younger? Right? Yes. Do you think she takes any, like, joy in being able to eat something that your daughter can't?

Barbara 52:45
I mean, she's gonna. And, you know, it's my husband. And I feel like we're sort of trying to find our way a little bit. You know, I'm a registered dietician. So I've always kept like, a super healthy household. But I know that I have girls, and I don't want them to have any issues around food. Um, so it's like this fine line between, like, letting her have things once in a while. But I'm not, you know, like, I feel like you do a very good job of this with Arden, like, you know, you say this a lot in your podcast, like, she wants to go to the movies, and she wants to slushy and she wants, you know, and you just figure out exactly how to correct for it. Um, I feel like my husband and I are trying to navigate the fact that, you know, we keep a super healthy household, maybe because I know too much or, you know, whatever it is, um, and then also trying to allow her to have treats and trying to figure out, you know, how to Bolus for that.

Scott Benner 53:43
Yeah, it's so much less about the food, and so much more about access, and not feeling and not feeling like there's something that exists that you are not, you know, quote unquote, allowed to do. Like, I think that's really the most important but like, in the moment, like the blood sugar, or the food or whatever, you know, that comes and goes, but the idea that I have diabetes, and because of that, there's a thing I can't do, that, to me feels like the most dangerous thing to feel like I feel 100%

Barbara 54:17
And I feel like Yes, and I feel like we're trying, you know, I have this very good friend. She's also a registered dietician. And we used to joke that, you know, more than anyone, we're gonna screw our children up, like, you know, we both have daughters, and it's just going to be one of these things. So I've tried to not make it about that, but there's not you know, even if I don't keep it in the house, like we'll still go out, you know, and have treats and stuff like that. So I don't want her to feel like you know, there's something that she can't eat. And I think we made the mistake in the beginning when she first came home from the hospital and I feel like you've talked about this too, where like, you give all these free snacks you know, so they were like she to this date, like cannot look at a string cheese or a hard boiled bed. And I feel like we back down quite a bit from there. I'm just allowing her to have what she wants still trying to keep it healthy. But just figuring out how to Bolus for it,

Scott Benner 55:12
what sounds to me like you're doing a great job. And to be honest, that anything that you've mentioned so far in this time, it's common stuff that happens to everybody. You know, it can feel so like personal and, and foreign. But the truth is that anyone who has, you know, been diagnosed with type one is going to go through most of the things that you've just said, you know, over this entire time, I mean, aside from the main thing in the plane and stuff like that.

Barbara 55:42
Right. And actually, I have another thing to add to going through this time, please. I might have mentioned this in the email to you, but she's also been in a clinical trial.

Scott Benner 55:52
Okay. Yeah. Which one?

Barbara 55:55
So she's in she's been in the clinical trial for two clues about oh, yes,

Scott Benner 56:02
hold on. I just made a note for myself, because I have a strong feeling that this episode is going to be called playing domain.

Barbara 56:08
Because I have I have such a good name for you for the episode.

Scott Benner 56:11
You have your people coming with titles. I go ahead.

Barbara 56:16
Okay, this will make sense in a little bit. But the title should be Bernice the male owl.

Scott Benner 56:24
You're not in charge of the titles.

Barbara 56:29
Good story about this title

Scott Benner 56:31
bar. There's part of me that thinks that it would be funnier if I did not let you tell the story about why you think that's the title. And we just let people wonder why you think Bernice, the male owl would be a good title for the bus. But tell me first about Oh God, here we go. To miss a blob that I get to write to miss. I can't say it to the mob. The blizzard mob? I have. Yeah. Okay. So she was in that trial, or isn't that trial.

Barbara 56:58
She is currently in the trial. And the way that it works with the trial is that they catch kids within the first six weeks of their type one diagnosis to put them in the trial. So basically, we arrived back from Maine, the end of July. And then she started her first two week drug infusion in September. And because of COVID they couldn't do it here in Chicago. So we had to go to Iowa for two weeks.

Scott Benner 57:29
Oh, I didn't know I was gonna get a bonus of you saying Iowa with your Chicago accent. I thought Chicago

Barbara 57:35
New Yorker comes across. Yeah.

Scott Benner 57:39
Yeah. It's really cool. It's a it's an interesting mix. Hey, this is gonna sound crazy. Do you know how to spell to close them off?

Barbara 57:45
Yes. So if TPL I'm actually writing it LIZAM UB. Oh, no. Is it to poison? I have to don't have to Google this.

Scott Benner 58:02
The reason I'm asking is I'm trying to search my site to tell people the episode where they came on and talked about it because super interesting. And you might want to go look, but it's a word. I can never remember how I found it. It's episode four. Yeah, yeah, it's episode 452. So if you're interested in hearing about the trial hearing about why this trial is so interesting. Take a look. It's it's a really cool they one of the I think one of the dogs. Have you heard the episode? Yesterday, the co founder of prevention bio came on and talked about it and what they're hoping to do with it. It's really cool. But you tell me about it. So she gets an infusion of this drug monthly. Is that right?

Barbara 58:49
No. So she gets to so it's an 18 month study. And she gets two infusions that are each 13 days.

Scott Benner 58:58
Okay. I gotcha. Oh, she goes every day for 13 days.

Barbara 59:03
Yes. Wow. And so it was so interesting, because once she got into the trial, they had to inform us that was no, it was no longer being run in Chicago because of COVID. So that we actually had to go to Iowa. For her to have this drug infusion.

Scott Benner 59:25
And you think it was worthwhile? You happy to?

Barbara 59:30
Um, I don't know, time will tell. And actually, I mean, we have we've sort of been very positive about the whole thing, because she's been remote learning the whole year. It made it very easy to go, she could just bring her computer to the hospital every day. And if you're ever going to participate in a clinical trial, like the best time to do it is when the world is shut down. Gotcha. Um, so, I guess, you know, we'll sort of see what happens but they just informed me that, I guess, because they've had such positive results that they've extended the trial and extra six months. So we'll find out in about a year if it worked.

Scott Benner 1:00:10
And so what's the so first of all, is this a blinded? Like, is it possible? You're not getting the drug? Yes. Okay. And but so what is the hope, like, the hope is

Barbara 1:00:23
that she'll need less insulin over time. That, you know, whatever cells she has in her pancreas, so they catch the kids in their honeymoon phase, when there are certain cells in the pancreas that are still producing insulin. And I think it works like, you know, by two mechanisms, either it helps to regenerate some of the cells that have died, or the cells that are still there, it helps to kind of like pump them up so that they still continue to produce insulin.

Scott Benner 1:00:52
It's very, very interesting. Well, I hope you got the drug, and I hope it does. What they're what they're aiming for, for you. That's really something Jade your daughter's a trooper for for doing that, too.

Barbara 1:01:04
Yes. And you know, she has a really good attitude. She said that, even if it's not helping her, which, you know, we're not so sure that she feels like it will help other kids eventually. So, you know,

Scott Benner 1:01:20
that is very sweet of her. thank her. Thank her for me. Yes, I will. Alright, Barb, we're gonna end here. But I don't know. Tell me about the hour, I guess. Let's go. Okay.

Barbara 1:01:31
So, you know, so when she was first diagnosed, I got a lot of advice from people about, you know, like things like, you know, crying a shower, you know, just to kind of find somebody to talk to. And I feel like because she was diagnosed, and then we did this clinical trial, it was kind of like, go, go go. And so I didn't really have time to like, process all of the emotions of it. But so she had her second drug infusion for to play them out in March. And we were back in Iowa. And my husband and my younger daughter came to visit and my younger daughter has this owl. And she said, you know, from when she's three years old, that the owl, it's Bernice, but it's a male owl. She's just for whatever reason, she's always said this. So it's a little joke in our family. Well, when we were on our way, back from Iowa, it was like, we felt kind of like the sense of relief that she was done with, you know, the second round of her transfusion, we get home. And then we realize that my younger daughter has left the owl in the hotel. And so I, I lost it, it was like a year's worth of emotions. Like I just It all came out. And so we call the hotel and I you know, warn my daughter that the owl might not be there because of COVID. You know, like they probably anything that they find in the rooms they have to get rid of. And she's hysterical and hyperventilating, loves this owl has had this Alison, she's three. And I got this really nice young woman at the front desk. And she said that she knows what it's like, you know, to have a lovey, and she will check the rooms and she promises if she finds it, she will send my daughter like is telling you that she will not go to sleep unless I drive back to Iowa and go get the owl. I mean, it was really it was like, I just felt like it was this. It was like the Holy Year. You know, like I'm sure everybody has sort of felt this way the COVID. But it was like COVID, the diagnosis, that clinical trial just kind of everything at once Well anyway, the woman found the owl, and we're getting ready to go on spring break. And she ended up sending the owl to the hotel that we were staying at in Las Vegas, and the owl arrived in a FedEx package. And then my daughter opened owl and just started to cry just completely lost it. But anyway, when I was thinking about the podcast, I was like that just kind of sums up our year like this, you know? Tremendous amounts of emotion and

Scott Benner 1:04:13
yeah, did you feel like did you feel like, I couldn't stop diabetes, and I might not be able to do a lot of things, but I'm not losing this owl. Is that like

Barbara 1:04:22
100%? I mean, you have no idea what links I went to to get the owl like this young girl who worked in the hotel. She was new to the job so she didn't even know how to FedEx him. So my sister said to me, oh, but I'm sure if she's a young girl, she has a Venmo account, just like send her some money and tell her you know you'll get her a FedEx number you know, so I felt like I am going to have this owl sent and that out and I even let them know at the hotel in Las Vegas that they were expecting a FedEx from us.

Scott Benner 1:04:56
Control Stop that Meteor from hitting you Did you Did You got in front of that one? Exactly the whole time you were talking. I just was waiting for you to mention a person. So I could say who? And then it didn't work out. I feel like down like, a stupid joke. Well, I'm I'm glad you got Bernice back. And yeah, but I think that I think that more importantly, right like, it's, it's a good example of how out of control, like diabetes can make you feel like, really that you just did I mean that that became so important. Like, I get that it's important to your daughter. Right. But that, but that that became so, so important, I think is a good example of needing to feel like you're ordering things, you know, you know, something, something's going your way. I'm glad that I'm glad that it went went your way and that your daughter got her owl back. So now I'm assuming she holds it while she's mocking your other daughter with food.

Barbara 1:05:56
It sits in the kitchen.

Scott Benner 1:05:58
Oh, my God, that's something Well, I really appreciate you doing this. Did you? Did you like talking? Did it meet your expectations? I think you were pretty excited to come on. So I didn't work out. Yes.

Barbara 1:06:09
I mean, I really feel like this has been such a great resource for us, like we get excited for when your episodes come out. We've tried a bunch of things that you've discussed, we actually tried, like you had a whole episode on the Warsaw method, which we've tried with my daughter, I feel like it's just made such a huge difference in our lives. So thank you for that.

Scott Benner 1:06:30
You're welcome to you know, I'll say this to you here because your episode will go up so far in the future. I think I can get away with this. But I have a meeting tonight about turning that Warsaw method into an app so that people can just have it on their phone to figure out the fat for the food.

Barbara 1:06:46
Oh, it's amazing. Yeah, I mean, I feel like it takes like, you know, it's like bringing back like, I don't know, math from college or something. You know, it's such like a mental game.

Scott Benner 1:06:58
Try to try to imagine maybe having a little app on your phone that you can just plug in the fat and everything. And it'll just, it'll help you get to that answer. So I'm gonna try. I have an app developer calling me tonight. We're going to try to figure that out. That's amazing. Cool. So well, I am super happy that you did this. And I am glad you found the podcast and that things are going well for you guys. I appreciate you. Please tell your daughter, I really appreciate her doing a trial, like anybody who does trials or are just helping everyone. So it's a really, it's a really big deal because I know it's not easy. And it takes up can take up time some of them so very cool.

Barbara 1:07:38
Thank you so much.

Scott Benner 1:07:48
I want to thank you so much for listening, and remind you to check out touched by type one.org. Find them also on Facebook and Instagram and go see what they're doing and what they're all about touched by type one. I want to thank Barb for coming on the show and sharing her story. Her story. Her story story. I want to thank Barb for coming on the show and let me get a drink. Hold on. I want to thank Barb for coming on the show and sharing her story. There we go. Oh, that was easy, huh? And thank you of course for listening. I'll be back soon with another episode of The Juicebox Podcast.

#594 Rachel is not Quincy

Rachel is an adult living with type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 594 of the Juicebox Podcast.

today's podcast features Rachel, her husband has actually been on the show already, but she's the type one intriguing isn't it? While you're listening today, I'd like you to 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 healthcare plan are becoming bold with insulin. If you're looking for the diabetes Pro Tip series begins at episode 210 In your podcast player, where you can find it at juicebox podcast.com and diabetes pro tip.com.

If you're looking for community on Facebook, I suggest you try Juicebox Podcast type one diabetes, it's a private Facebook group with over 18,000 people just like you talking about using insulin and living with diabetes.

This episode of The Juicebox Podcast is sponsored by touched by type one, learn more about them at touched by type one.org. They're also on Facebook, and Instagram. today's podcast is also sponsored by the Contour Next One blood glucose meter. You can find out more at contour next one.com forward slash juicebox. Use the most accurate meter I've ever held my hand Contour Next One.

Rachel 2:01
So my name is Rachel. I am 26 years old. I live in the US and South Carolina. I've been living with type one for seven years now. And my husband has also been on the podcast

Scott Benner 2:15
he has been now you ready for the fun story? Sure. So we met at the Georgia JDRF conference. Is that right? Yeah, that's right. Okay. And then later through emails and everything. We booked Quincy to be on the show your husband, except for the entirety of the time after the booking up until a person's voice appeared on the recording. When I was like Hello. And Quincy said hello. I thought you were Quincy.

Rachel 2:52
That's a weird. And what do you think that just his name or

Scott Benner 2:56
it was just the name? I just didn't I meet a lot of people at those things. And so I don't know why Quincy just I was like, oh, Quincy. I mean, you have type one and he doesn't. Right. Right. And, and you were very, may I say I put words in your mouth. You were really excited to meet me. So totally was you can say that. Okay. Okay. So I just kind of thought, wow, she must be the one that wants to come on the pocket. And

Rachel 3:24
well, funny side of that story, from my perspective, is that, so I think you said something about, like, oh, it'd be interesting to get your perspective, you know, being married to somebody who has type one or whatever. And a lot of guys don't come on the show. And so that's why it made sense. But we walked away from that. And I looked at Quincy, and he was like, Are you mad that he asked me to come on the show? And I was like, You are so ridiculous. He gets it. He's one of those people. Like you can do any sort of game and get it perfect on the first try. Like these things just fall into his lap. And so I was just teasing him the whole time. And he was like, don't be mad. Well, funny.

Scott Benner 4:02
If it brings you any comfort. None of that's on purpose. For my part. I think people I think people who listen long enough realize like, wow, this doesn't seem at all odd that this happened. So I yeah, I so he pops on. And you know, man's voice. And I'm like, That's not her. And then my brain. Although it was not smart enough to coordinate the entire thing. My brain was quick enough to stop myself from going, Hey, yo, you're not a girl. I just, I just, I was like, hey, and he, you know, I said, How are you Quincy? And he said, good. And I went, Okay, let's definitely him then. And I just, I pivoted on a dime. And then that's why when I got done, I said, Hey, I'd really like to have your wife at some point.

Rachel 4:54
I'm here to set the record straight. Please.

Scott Benner 4:57
Please let him find this out. listening to this recording?

Unknown Speaker 5:01
I totally okay,

Scott Benner 5:02
thank you. I appreciate that because you know, it's not gonna go on for months. It'll be like a year after he was on. And he'll hear this. And by the way, hey, Quincy, what's up? You have a girl's name kind of I don't know. It's not a girl's name is it?

Rachel 5:15
He's heard everything with his name. Honestly, it's not that I've ever heard but people say all sorts of things when they find out his name.

Scott Benner 5:22
Allow me also to save for the 2021 millennial crowd. I know there are no girls and boys names, and anybody can be named anything. And by the way, my daughter is named Arden. And that is heavily weighted as a male name. So

Rachel 5:36
I'm really I had never heard it prior to listening to the show. And I really love

Scott Benner 5:39
it. Thank you. There are not many of them. When we named her there were slightly over 9000 people named Arden in the country. And I think 60% of them were men, something like that. And just for everybody's context, Quincy was on episode 410. And it's called Best hug. Yes. And I don't remember why.

Rachel 6:03
But because I think it was because I gave you a hug. And you were like, it seemed like she was hugging me because I had like, really impacted her life where she just gave like a really good hug.

Scott Benner 6:15
Oh, yeah. I don't remember why. So there's that's interesting, too. For everyone out there. I don't know. Have you ever had a woman who's somebody else's wife hug you in public in front of the husband? But unless you've got that, that cold vibe, it feels very strange. I

Rachel 6:31
see, like, was totally, he was like, No, this makes absolute sense. Because I mean, the show really helped both of us. So he was like, Nah, that's fine.

Scott Benner 6:38
It's very cool. And I'm super happy you're here. And let us not talk of him ever again. Unless he comes up in the course of the conversation. Anyway, I was just five minutes ago explaining this to my wife. She's downstairs working. And if you could have solved like the abject disappointment on her face, that she married a guy who couldn't figure out who's who had a conversation.

Rachel 7:03
Now we get to pretend like it was completely on purpose. And when people listen to this, it'll just be full circle. Oh, that that guy's wife. Cool.

Scott Benner 7:09
I looked at Kelly and I was like, Listen, this is what it's like being in my head. I find it freeing. Don't judge me. Anyway, I was proud of myself back then for how quickly I was just like, okay, and just went right with it. And we had a great conversation after that. So

Rachel 7:28
yeah, I was really proud of him. When I listened to it. I was like, well, could you?

Scott Benner 7:31
Well, this is interesting. What was it like to hear your husband talk about your diabetes? away from you?

Rachel 7:40
It was really at first I was nervous. I was like, What is he gonna say? But then when I listened it was really sweet. Like to hear it from his perspective without me there like him feeling like he had to say a certain thing, you know?

Scott Benner 7:52
Yeah, that was really sweet. You were comforted by that it wasn't off.

Rachel 7:57
No, it made me laugh, like, because both of our perspectives has just changed so drastically even since we got married. And so it was cool to hear him talk about the evolution of his thoughts around type one. And in relation to me,

Scott Benner 8:11
Well, how did your perspective how has your perspective changed?

Rachel 8:14
Oh, my goodness, where do I even start, like I saw I was diagnosed at 19. So I was already kind of, you know, a whole person living my life one way prior to getting diagnosed. It just the way in which I came to know type one, it was just I mean, like most people, the hospital just didn't do a great job explaining that you can even be successful with type one. And so the show when I found it, I had already been so beaten down with like trying my best using hospital methods. You know, no Pre-Bolus saying you don't touch your Basal right. So you don't do anything yourself, your ended at all kind of thing. I had been so beaten down because I'm not a person that, you know, just rolls over. Like I had tried really, really hard to like make it work to have good numbers. But I kept coming up with this frustrating, you know, spike with every meal and then a crash later because I had no idea about Pre-Bolus thing. And so, I was so tired of diabetes, like when I found the show. And someone told me about it. And they were like, Yeah, this guy. He talks about his daughter's diabetes and how he manages it and she is like normal agencies. And I laughed. I was like, That's not real. That's like, and then almost there was like this anxiety in me because I was like, what if that is real? And what if I've been doing it wrong? Like what if there's a new way?

Scott Benner 9:46
I'm fascinated by that space in that thought right there. I bring it up. I think more than I should when I'm talking but that idea of you've been doing something for so long in one way and Your results aren't great. That changing is almost too painful. Because then it's some sort of like, like, Yeah, well, you're this bright light on what you were doing before and how it wasn't working. Yeah, that part fascinates me. And then trying again and learning something new. I know how difficult that is. Because a lot of people tell me wrapped around diabetes. I actually just yesterday was talking to someone who, who, I guess works at Omnipod. I guess I can say that. And they were talking about some campaigns that they're going to do this year. And I they were getting my input about what I thought of them. And I said the this exact thing I said, I think you're missing, that it is incredibly difficult for a person to take something that they feel like they understand even if it's not working, as well for them as they want it to at least they understand it, and ask them to relearn something. I was like, I think there's much more of a leap in there than you than you think.

Rachel 11:07
Yeah, I totally agree. So I Yeah. And it was hard to like relearn what I had already thought was impossible to do. So when I found the show, that's kind of the mindset that I was in, like, diabetes is impossible. I try and I try. And I pretty much at that point was just I was on Omni pod. So at least I was on a pump. But I was just using, you know, test strips. I couldn't didn't use Dexcom. Right, because it was too stressful for me to see the chaos going on when I had no way to control it. Understand that I didn't understand how to make it better.

Scott Benner 11:43
Yeah, no, I understand that. Well, out of sight out of mind is better than Yeah, look, you're messing it up.

Rachel 11:48
Exactly. So like occasional testing to be like, well, yep, still sucks. Cool. And then like moving on, you know, it was better for me than seeing the Dexcom graph where I was just constantly, you know, woken up by alarms and annoyed by it. And I couldn't do anything to make it different. So the show, I think the very first episode I listened to I know, I know, it was it was Jen had a pain Korea tech dummy or whatever it is where they removed the pancreas.

Scott Benner 12:14
Yeah. Yeah, remember that one?

Rachel 12:17
Yeah. Also, apologies to my dog. I can hear her.

Scott Benner 12:20
That's fine. I mean, it's not being eaten by like a coyote or something. Right?

Rachel 12:24
No, she's just a puppy and really hates being alone. We just got her recently. So that's been a fun journey.

Scott Benner 12:29
Yeah, starting to make all the mistakes. Great.

Rachel 12:33
I know we got a dog. But anyway, I listened to that episode. And then I was like, Okay, this is interesting. And then I found the bold with insulin episode. And of course, that's the one where you talk about the methodology, just kind of behind all of this. And I was like, what? This is a thing like, I'm gonna try this. And so it changed my perspective about the ability to like when

Scott Benner 12:56
I'm glad, that's amazing. interesting side note, that episode that you heard first was going to have a completely different and weird title. And Jen, Jen stopped me. She's one of the only people that has ever been like, No, you can't name my episode that she just, she's strong armed me and I was like, okay, and I felt like we were married. I was like, I'll do it. I'll fix it. I'm sorry. Enter, I want to say she was right. I picked something ridiculous. But she had a kind of a southern sensibility and it rubbed her the wrong way. And I was like, okay, like, I'll don't worry about it. She was so insistent. There's I could not have said no, she's like, well, what if we just call it something like what it is? And I was like, alright, well, then,

Rachel 13:38
after everything she had been through, I feel like that makes sense. 100% She

Scott Benner 13:41
gets a pass right away. Crazy story, you know? But then you found episode 11. So did you go through some sort of social media to make that leap? Or did you how did you figure that out?

Rachel 13:52
I'm trying to remember how I figured I think I just started scrolling and then oh, I know what it was. It was where you recap episodes that were important on the podcast. It's like where you went back? I think it maybe was for the 100th episode. Oh, I

Scott Benner 14:05
revisit I listened. Oh, I did. Basically that's,

Rachel 14:08
you talked over old episodes. Because of

Scott Benner 14:11
my laser disc days, I did a director's cut of why we used to watch movies on you don't know about any of this. You're fairly young. But movies used to come on these record size discs called Laser discs. And there was so much storage room on them. That director started watching their movies and telling you what they were thinking while they were making them. So instead of the audio from the movie plan, you'd hear the Director's Cut, you'd hear the director talking. And so for my 100th episode, I listened to bowled with insulin. And then so you know, you would hear it, I would be listening. And then I would stop and sort of like, add addendums to it or like, Oh, I didn't realize this. Yeah, here's how I think about it. Now you found that one?

Rachel 14:51
Yes, I found that one and you're talking over it. To be honest, kind of annoyed me a little bit. I was like, Wait, what is the original episode and so finally I was like, Okay, I'm going back. I'm going back. And I listened to that one. And then I started from the very beginning,

Scott Benner 15:07
being annoying is my signature move. I'm sorry. Oh, no, no, I think I get a lot of really wonderful reviews. But the only one that sticks in my head. So funny and weird. Like, I seriously, they're so touching, I want to just say I read them. And I'm like, almost brought to tears by many, many of them. But the only one that I can pretty much recite verbatim is I love this podcast and hate that guy. And it just makes me so happy because it means that the information is so valuable, that even though she I'm just assuming she really really really didn't like me, she had to listen anyway. And by the way, if that person still listening, I think of you constantly and Haha, so.

Rachel 15:56
So it's just such a new concept. And so you interrupting it was like, wait, no, what was he originally trying to say? I should just be smart and go listen to the original. Cool.

Scott Benner 16:05
So I tricked you. I got two downloads. Now. I have to say in honesty. You hugged me like we were in a movie. You know what I mean? Like I was waiting for the camera to like, pan around so it could get your face in my face. And the same thing and, and there's that moment where. So if you could try to understand that day, I get up early in the morning, I get dressed, I come downstairs I'm you know, moving about I meet Jenny for the very first time in person that day. Just remember that that's cool. And then, you know, I'm up on stage, I think for an hour or so. And then there's a very short break. And Jenny comes into the room and we do another hour together. And then it turns into a meet and greet which I don't know, were you in the other rooms right? For other stuff.

Rachel 16:58
I have seen one of your I think I saw the first talk you did because it was just bolt with insulin. And then we went to one of Jenny's and then we came to the one where you guys talk together. And after that we came up.

Scott Benner 17:10
Did you do any after me?

Rachel 17:14
I think so because they had Eric Tozer I think it was

Scott Benner 17:18
I wish you wouldn't have said his name. Because I was gonna say Do you notice how there's no meet and greets after most of them. So that's a weird thing. Because when I get done, then there's a line of people. And

Rachel 17:30
remember what was after it honestly, I can remember like, what,

Scott Benner 17:33
that's fine. Eric probably doesn't listen, and he's a nice guy. Don't worry about he'd be fine with this. We're not talking about him. He understands the flow of conversation. But my point is only that, like after a couple of hours of talking. You're mentally exhausted in a way that if you don't do that you don't realize that I'm not reciting anything. I'm just going off my head. And then you start talking to people. And many of them are trying to tell you how important the podcast is to them. And it's it's tough, like it's tough to stay. It's not tough to stay in the moment. But it's tough to remember everything. You stopped it for me like you hugged me and I thought, like I felt it, not the hug. I felt like oh, I've I think I maybe have helped this person. Like you don't mean like it felt really good. What What's the relief for you? Because you traveled to be there? Why did you do that?

Rachel 18:24
Yeah, that was actually our first type one event ever. And I came to it because I heard that you and Jenny, were gonna be there. And again, like my husband, I were just shifting the way in which we talked about type one together how we thought about it, we were like, You know what, this would be good to do. Let's go. It's closer. Like, let's go do it. So we came, I guess to see you guys, you know, and to meet because at that time, too. I was. And I still am working with Jenny. And so I was going to meet her in person. And I did and so it was really sweet to like meet both of you that day. Oh, that's

Scott Benner 18:57
cool. Were you in but Were you there when I did the like how far people had come really long distances to be at that.

Rachel 19:04
That was insane. I can't remember the farthest one but I remember being shocked. Yeah.

Scott Benner 19:07
Do you remember thinking wow, it wasn't me.

Rachel 19:11
I know. It was just like, wow, people like really care about these things.

Scott Benner 19:16
Well, that's sweet. I think it was me but I mean, I it was you. I seriously I think we can go to other JDRF events. They How far did people come? And no one's gonna say, well, we've been driving for there were people who were driving for like, six hours. Like, am I remembering that right? Like some crazy. Yeah,

Rachel 19:32
I mean, everyone we talked to like, just in passing. They were like, Yeah, we're here for the Juicebox Podcast.

Scott Benner 19:38
They were there for Jenny. They were just trying to make me feel better, I think.

Rachel 19:41
No, I don't know. It was it was funny. They're like, No, we're just boxers. I was like, oh, that's the thing. Okay,

Scott Benner 19:46
I didn't know that either. By the way until someone told me I was like, yeah, now there's a t shirt now that I know it.

Rachel 19:54
So I think it just the relief for me was just in. Like I said feeling like a failure for so long is really hard. Like, in being a person who really wants to do well, you know, despite getting a diagnosis that is very, very challenging, and spending the first five years just like, in a daze, like trying as hard as possible, and not coming up with, like results that I wanted, and being so, so confused that whenever I found your podcast and like, use the principles, and it started to work, and my a one C lowered, and my time and range increased, and my life was more full, because I wasn't panicking about like, you know, what was happening to my body while it wasn't being taken care of. I mean, yeah, that's like all the relief you'll ever need. It's just like, you see the person that, you know, helped contribute to that. And you're just like, oh, my gosh, thank you like,

Scott Benner 20:51
yeah, no, it was lovely. It really was I was touched, I was really touched by it. I mean, not touched enough to remember that, you know, your Rachel and Quincy, but I'm joking. It was just, it's a lot. And then I have to get on a plane. And by the way, at that point, it was a little bit of that, like, hey, you know, people are starting to get sick all over the world vibe going on. So

Rachel 21:09
that was the last thing we went to like the last in person, like large event? Yeah,

Scott Benner 21:15
sure. No, no, I remember feeling like I maybe shouldn't be here. Like when it was happening, although, you know, there's this thing that happened yesterday, on the pod made me the potter of the month, I think it's just so cool that that's all a social media thing that they do, which is nice. But they would, and I don't want to just, first of all, I don't want to breeze over it. Because I am really touched. Because I don't have diabetes, I thought it was a really wonderful gift for them to say that. But my point of bringing it up wasn't just to point out that it happened, although I'll take that. It was that somebody in I was very careful to read all of the comments. And there were more than 200 of them so far. And one of the people said that they were like last and went to the conference in Georgia. So there's a person in that room who then I mean, now it's a year or so later, who I just noticed for the very first time because of the potter of the month thing like I never would have known that person story. They were just in that room. And I guess I said something that made sense to them and to change things for them. So it's very cool. Awesome. Yeah. So I want to know a little bit about fit. Like you said, you felt like a failure. So were you trying really hard and nothing was working? Where did you eventually just give up enough. And that's why it wasn't working.

Rachel 22:48
I was trying really hard and nothing was working. I've never been the type of person. I mean, granted test strip testing, like we said, isn't very involved. But I've never been the person to just give up even in burnout. Like, that's just not something I do. It's more of an emotional drag. For me when I'm in burnout, like, I'll care for myself, but I'm like pissed that I have to care for myself, like, kind of thing. So I was trying really hard. And I mean, it's just the similar story. Many people say like when when your care team doesn't have type one, they care about you. They want you you know, most of them do anyway, they want to help you. But what can three month gap appointments do for you, when they don't empower you to like make your own changes when it's like a daily disease like, and they weren't talking about Pre-Bolus Singh, I had no idea how to adjust my Basal rates, like I would do it in the doctor's office, like she would show me what to do, but she would tell me what to change them to. And I had no no concept of why. So it made me feel reliant on them. And also, I didn't trust them because I still had crappy blood sugars. So it was like, such such a like, weird little trap that I felt like I was in.

Scott Benner 24:05
So they're telling you listen, we're the only ones that can do this. And they they weren't particularly good at it.

Rachel 24:12
Yeah, and I would try like, I mean, I I truly like I haven't had a doctor that I look back and go wow, they were awful. That's not the case. It's just with the information available. And with again, I mean they have the luxury of not having type one they don't get it like as much as those of us who have it do. They would just give me the bare basic information in I would come in I would even try to schedule at first like more than three months appointments and that's typical like I guess when you're first diagnosed, but even a few months past that. I was trying my hardest to understand I would walk in there I would have my you know, log book or whatever. That's hilarious. I don't even know what those are at this point but the You know, I was trying so hard, and they would just look at me so confused, like, why I wasn't accepting that this is the way that it is.

Scott Benner 25:09
So you were you were not the way you were kind of the problem, right? Because there's a way they do it.

Rachel 25:14
And yeah, they're just like, No, this is normal, this is fine. It's fine. If you go to 220, after a meal, it's completely fine. And I was like, Well, I don't feel fine. They're like, well, this is how it is.

Scott Benner 25:24
I'm gonna say this, I'm gonna say this here. And I said, on an episode I recorded the other day, if you're a healthcare professional, and you're telling people that, I believe that is malpractice And shame on you,

Rachel 25:35
it's frustrating. And it's like the doctor that I know, would never want less care for their kids, you know, like in any other circumstance, but they're taught to believe that it's okay. It's not that they are lying. It's that that's what they're taught to,

Scott Benner 25:54
but you don't think that's what they would do in their own personal life? Say what you don't believe that's what they would do in their personal life?

Rachel 26:00
I don't think so. It's like if they knew if they could have a child that had it and see how that child felt at 220, you know, after a meal, they would question it, too. Yeah.

Scott Benner 26:10
Okay. Okay, so you i following I at first thought you were saying that they are telling you one thing, but would do another. You're saying if they saw it close up? They would know that wasn't the case.

Rachel 26:21
Yeah. They're just taught in the medical community. I think that like, well, this is the best we can do. Yeah. Because like me, I mean, they just think well, this is how it is, right? Well, it's not. You want to be careful.

Scott Benner 26:33
I'm super glad that you found the podcast. I like you a lot. You have such a great vibe about you. Thanks. I don't I just there's something really just lovely about you. It's why I was so disappointed when Quincy was your husband.

Rachel 26:45
You're like, it's not. But I wanted

Scott Benner 26:47
the other one. I thought he ended up being terrific. By the way on the podcast. He really was good.

Rachel 26:55
He is so well spoken. He always surprises me. I when we go to social events. I'm pretty social, but I let him step forward. I'm like you, you take it.

Scott Benner 27:06
You chew up this chit chat. I don't feel like doing this anyway.

Rachel 27:10
Actually, whenever we were going to talk to you. He was like, Okay, we got to go meet Scott. Like, do you want to do that? And I was like, Yeah, and we go, and then also, I got so nervous. And I was like, No, I'm just another one of these people. He has so many people around him. I'm like, so spatially weird. I don't like bothering people. And so I started getting nervous. I was like, no, maybe we won't. And he was like, Rachel, we drove all this way. You have to open it's like, okay,

Scott Benner 27:37
well, I'm very glad he did. And it was it's no bother. I enjoy meeting everybody. It's just hard to keep it all in your head athletes. You know that that's pretty much the only thing. But no, the experience is is amazing. It's it's, it's really touching to hear from people. And it's sometimes they say something, and you're like, Oh, that's a good point. You know what I mean? Like, I never thought that I've also met a couple of people who are like, you know, strange in a good way. And that's fun, you know. And so there's a there's a lot that goes on. Mostly, I think, I think a lot of people that are in the rooms that don't know what to expect when I'm talking I think they leave a little like, like, I don't know, they may be dumbstruck or all inspired or something I'm not certain, but they walk out you can see them just kind of looking in the back of their head and thinking to themselves, like, this isn't anything that anybody's told me so far.

Rachel 28:31
That's what I'm saying. I'm willing to bet it's the same, you know, realization that washed over me when my friend told me about the podcast, it's like, Wait, there's another way?

Scott Benner 28:40
Yeah, you can see them nodding along when you're talking. Like, like, you'll say, like, have you ever noticed, you know, whatever. And they go, Oh, my God. Yeah. Like you can see on their faces like that, that thought?

Rachel 28:51
Yeah, like, especially when you do real life examples, and you show a graph and you're like, has this ever happened to anybody? And everyone's like, Well, yeah, like, and you're like, it doesn't work to do it the way you know. And you say, you say it better than your doctors don't know what they're talking about. But you know, I'm super polite. Yeah, it doesn't work, you know, to do it the traditional way. And everyone starts being like, they admit to it, like, No, it doesn't work.

Scott Benner 29:15
Oh, Lady said to me one time she goes, you said, Does this ever happen to you? And she said, I thought, yes, every three and a half hours.

Rachel 29:22
Yes. I mean, truly, like, I go back and I'm like, you know, no wonder like, I would Bolus as soon as I put food in my mouth. No wonder I would go high as a kite and then crash down later and just be like, well, let's do it again. It's lunch now. Like, it's ridiculous.

Scott Benner 29:41
How long did it take you to pull it all together?

Rachel 29:43
Really five years, I swear, like, I mean, I found the podcast 2019 Like towards the end. And so it was like, because I remember it was Thanksgiving. And we were headed home. We have like a three hour drive to get to where Are our immediate family. Some of them are. And so, the friend had told me it was a friend's husband who was actually asking me what being on Omni pod was like, because he was about to switch pumps. And he was camera which one he was using, but I am like, Omni Potter die like, yeah, you would have to pry that out of my cold dead hands like for me to switch pumps. But anyway, you can put the Omni pot out here

Scott Benner 30:36
I actually don't have an omni pod ad today. But Omni pod.com forward slash juice box. The ad I have today is for the Contour Next One blood glucose meter. Now this is the most accurate, reliable, easy to hold easy to handle easy to use, blood glucose meter that I've ever touched or used in my entire life. i It is the best one I've ever used. I'm thrilled that they're a sponsor, what you need to do is go to contour next one.com Ford slash juice box to see it for yourself. And to learn more. The simple truth is that blood glucose meters are something that were given were handed, nobody asks us which one we want. And that's a shame. And it doesn't need to be that way. Contour. Next One is the blood glucose meter that I would choose if I was given a choice. It's not the meter that my daughter's endocrinologist had sitting in a drawer, or you know a bunch in a closet or it's just the one that you know our practice like this one or whatever reasoning they use. How about instead you get one that is easy to handle, easy to use has a bright light. And if you want an app to attach to it works with Android, or iPhone. So this is a meter that you can dig down deep with with your data with that app, or you can just use it free of the app as a meter. It fits in your hands so well or in your pocket or your purse or wherever you carry your diabetes supplies and it has a second chance test strips, which means you can go touch the blood not quite good enough and go back and get more without ruining the accuracy for the test strip. And that accuracy is an industry standard. It's so good. Contour next one.com forward slash juicebox. It's a web page with so much information that when you leave there, you'll know for sure you want to Contour Next One. So head over now, make a decision. Don't be told what blood sugar meter to use. actually decide for yourself. Before you go head over to touched by type one.org. They're absolutely my favorite type one diabetes organization. So many programs and services for people living with type one. And all they want is for you to check them out at touched by type one.org. When you get there, there's a tab for programs where you'll see their conference awareness campaign bowl for our cause their dance program, their dancing for diabetes show their D box program. They do so much for people living with type one diabetes, you can also find them on Facebook and Instagram. But you should check out what they're doing at touched by type one. I appreciate you listening to the ads. Now I'm going to get you back to Rachel

Rachel 33:26
all dead hands like for me to switch pumps. But anyway, he was talking to me about it. And I was telling him and then at the end he was like, you know, you sound like somebody who would be interested in this podcast I listened to you told me about it. I laughed and was like, No way. And then I told it. I told Quincy about it. And he was the one that was like, Wait, we have a long drive like see, like, Let's listen. Let's see if it helps. Yeah, really Quincy is like a big part of this.

Scott Benner 33:55
Yeah. Well, he's he's a he's my hero in this scenario, that's for sure. I mean it because I can't imagine like I really I don't have context for being an adult with type one being approached by another adult with type one and being told you should listen to a third person who gets what doesn't have diabetes at all. Isn't a doctor and it's going to help you with your blood sugar and you I can't imagine not thinking that can't be right.

Rachel 34:26
I definitely was sketched out a little bit. I was like it's a podcast.

Scott Benner 34:30
You can't step on that dog. It's this dog. No, don't don't say that on the podcast. She's joking. People love animals don't say that. She would never hurt the puppy. Tell people you would never hurt the puppy.

Rachel 34:42
But this puppy this puppy literally has everything it could possibly need.

Scott Benner 34:46
What's a puppy? I mean, the puppy it's got water and like food. I think it has everything it possibly needs, right?

Rachel 34:52
It really has everything it possibly needs.

Scott Benner 34:54
It doesn't have your attention though. Apparently.

Rachel 34:57
If it's okay with you. I might go stick her in the garage so she does Thank you, Wally.

Scott Benner 35:00
Let's say the soft, beautiful room that you put the dogs in.

Rachel 35:05
Okay. Okay. Insulated room that also has everything

Scott Benner 35:09
she needs temperature controlled room. Go ahead. I'll stay here and keep myself busy. Sorry. I'll be right back. Oh, you're fine. Do you guys remember that time I left the couple alone to go help Arden with a Bolus and they played music? Wasn't that crazy? Did you hear that? No, no. What? I have no idea what episode it was her I would tell you. There are too many episodes now. I can't remember anything. Do you think she's gonna kill that dog just to be on the podcast? She wouldn't. The dogs fine. No one worry. No dogs are harmed, as far as I know, in the making of this podcast episode. But let me tell you about Omni pod. The Omni pod tubeless insulin pump, I'm going to do an ad off top my head until she gets back. The Omni pod tubeless insulin pump is amazing. You actually right now may be eligible for a free 30 day trial of the Omni pod dash, you'd find that out by going to Omni pod.com forward slash juice box. Now you can type that URL into your browser or get it right there in your podcast app. Right in the show notes. It's in there or it's available at juicebox podcast.com. Now, why do you want a tubeless insulin pump? Well, that's easy, constant Basal, right. Everyone on the tube pump has to take their pump off to shower or bathe or swim. Not you, you have an omni pod, constantly working for you. You can have it on while you're playing soccer. You can have it on while you're carrying a dog to an undisclosed location. You can wear your Omnipod 24/7. And never be without your Basal insulin. It's a big deal. Plus, there's no tubing. And because there's no tubing, there's no controller to connect your body. Right. Other pumps have an infusion set connected to a tube, the tube goes to some controller, then that controller has to be clipped to your belt. I hear some people put it in their bras down their pants, probably not in the front. You know, pocket, it's this thing and now you're connected to it. Plus, if you walk past like a doorknob, you could get the tubing caught on the doorknob, this rip it right out. None of that will happen with the Omni pod tubeless insulin pump on the pod.com forward slash juice box. Now when you head over, you put in just the tiniest bit of information. And when you're done on the pod, we'll get right back to you. Right and if you're eligible for that free 30 day trial. Well guess what? Things are going to be looking up real quick. Where is Rachel? I'm here. Oh god Rachel I just did an entire Omni pod waiting for you to come back.

Rachel 37:46
I heard you that was really really well done.

Unknown Speaker 37:47
Did I do a good job? You did?

Rachel 37:49
I did not know I mean I know you like do them live the like experiencing it. It was really good.

Scott Benner 37:55
Oh, thank you. Yeah, were you waiting for me to be finished? Or were you just choking

Rachel 38:01
Oh no, I heard you I was like oh, he started my tubing I bet you the cin

Scott Benner 38:07
just just for clarity the dogs alive and as well right?

Rachel 38:10
Oh my goodness. She is doing just fine. Excellent. Super sweet.

Scott Benner 38:16
I don't want people thinking you you soprano that dog so you can be

Rachel 38:21
she may start up again. So people might hear how alive and well she is

Scott Benner 38:25
in toss Rafa boat. No, actual sopranos reference. And by the way, let me just say this now if you haven't seen the sopranos, I don't know what you're doing. Go to HBO max right now start watching from the beginning. It's one of the best TV shows ever. Not the point of this conversation though. Okay, so you diagnosed at let me check my memory. 19. Yep. How old were you when I met you?

Rachel 38:51
Oh, gosh, it would have been

Scott Benner 38:53
two years ago. Yep. Take your agents subtract one year.

Rachel 38:57
But it feels like long because of COVID. Don't

Scott Benner 38:59
Don't Don't Don't argue with math. Math is an absolute.

Rachel 39:02
Yes, one year ago. So I was 25. There you go.

Scott Benner 39:05
So you you lived for five years your way with the way that they gave you? Yeah. And then after you found the podcast, how long did it take you to just make the changes and see the results?

Rachel 39:19
It was hard. I feel like it was about six months.

Scott Benner 39:23
Oh, I think that seems short. But I understand that it wouldn't seem short to you

Rachel 39:28
know, and I also hit like a huge patch of like, so working with Jenny. I can see. First of all like the first time she emailed me with like suggestions on what to change and why in all caps. Why? Like, I wanted to cry. I was just like, This is what I've always ever wanted. Like this is amazing. So fine tuning things. At first it went really well. And then I actually so I say six months because it's like a special circumstance where I think I actually hit the This like really big patch of like, insulin resistance for whatever reason. And Jenny actually recommended that I switch insulins to see if that would help. So I went from no vlog to homologue, which isn't like, I mean, everyone's biology is just so different, but it's not like a huge switch. But it was like night and day difference. It was awesome. And then I also came off of a medicine that I was taking. And that really, really helped as well. So that in combination, once that was done, then things were smoother and Pre-Bolus saying made all the sense. And I could find to my diesels, and it was all great. Yeah, I mean, not perfect, but you know, like it made sense. Yeah.

Scott Benner 40:42
Did you? Do you start with Jenny before me? Or did you find Jenny through the podcast? Through the podcast? Oh, I don't get paid for that. But I should.

Rachel 40:53
Yeah. What is Integrated diabetes? And I looked at it, I was like, How have I never known about this? Like, I totally would have done this sooner. I was so ready to be like, there's something else.

Scott Benner 41:06
You know, I want to take my joke back for a second because I am more than paid back with Jenny being on the podcast. So nobody has to pay me anything for that anything, Jenny's terrific. And she she very much adds to the podcast. And I'm so now afraid that she heard me joke like that, because I don't want her to think that I think that because I definitely don't. Anyway, that's cool. Like, it's amazing. How has all this changed your life? Like? I seriously, is there a palpable difference like palpable it's palpable right now palpable, palpable, palpable. Like what can you point to?

Rachel 41:44
So it, I just, I mean, literally physically, a onesies are down. I always hovered around in this heaviness. And once again, my doctor was like, I mean, it could be lower, but this is fine. And now, I mean, my last day when she was five, one, and my time and range was great. And I also like just don't even stress about what I'm eating. Like, I eat a very normal American diet. And I noticed that, like, I've heard you talk about art. And I'm kind of the same way like, I will eat a burger and fries for one meal, and then I'll eat a salad the next and I just don't stress over it the way that I used to. I don't even think I mean, I know I haven't been diagnosed with like, an eating disorder. But once I confronted the way in which I managed my type one, I realized, like, a way in which I was trying to have control previous to the new way of managing was like limiting my carbs. Because I thought and I had realized, like, Oh, it'll, it'll limit the spike, because it did. But that's so restrictive and so harmful. Like, in everyday life, it's just not a way to live personally. Like if you want to eat that way. And that's what you choose. That's one thing. But for me, it was like I can't because it will hurt me. And I just didn't even realize that because I thought that's how it was. And so then once I realized, Okay, once I understand how to use insulin, I can eat, you know, within reason, like whatever I want. You know, this is great, like so it was it was better on just so many fronts, like I just had a lot less stress around managing and eating and living my life

Scott Benner 43:32
so that the low carb mafia doesn't come at you. You're not saying low carb is an eating disorder. You're saying limiting yourself for any reason to be

Rachel 43:39
right just like restrictive thinking around foods like I that's, that's frustrating, like, No, I think if you're doing low carb on purpose, and you're doing it intentionally, and healthily, or however you eat, like, that's completely fine. Okay, but for me, it just like internal, like, I was telling myself, I cannot have this because my results will not be great. And that was so harmful for me.

Scott Benner 44:06
So it's amazing. How about burnout? You mentioned it earlier? Do you experience it as frequently now?

Rachel 44:11
No, I definitely don't because I think so I've always said there's two phases like to being upset about type one. The first one is just that you have it. And if you're diagnosed with it when you're younger, I feel like I hear it doesn't happen as much because you're used to it. But I guess everyone's super different. But for me, I mean, I have a clear memory of what it was like to not have it and a clear memory of what it's like having it

Scott Benner 44:39
it's better not having diabetes or saying

Rachel 44:41
I mean, you know if I had to choose. Yeah, so there's there's the phase of like, what you hit at first where you're just mad that you have it. Sure. And then there's the phase where like what I was describing that I think can cause burnout where you're trying your absolute hardest You're doing your best you're giving it your all and you're still having terrible results and you feel terrible. That's burnout, like, okay, giving it what you think, you know, it means and it's not working. So

Scott Benner 45:14
for you, you have the regular level of diabetes just sucks having it. Yeah. And then there's the effort to take care of it. But then on top of that, you get the outcomes that don't match your hopes. And then the physical and mental stuff that comes along with that.

Rachel 45:35
Yeah, exactly. And so there was a point where I was over the first phase where it's like, okay, I have this, I've accepted it, it's okay. And now I want to make it better and live my life. And I couldn't like I mean, I could, but it just was, I had to ignore it pretty much.

Scott Benner 45:51
You were ignoring your health pillar of your life.

Rachel 45:54
Pretty much like ignoring the fact that I could not. And again, not ever not taking care of myself, but ignoring the thought that it could be better, like pushing that down, because it is the way that it is the doctors say it's fine. I don't feel like it's fine. But it's gonna make me crazy, because I can't change it. So I'm just going to push it down. And that's why again, when I found the podcast and someone talked to me about it, I was like, Wait, so had to like dig it all back up kind of a thing. It was almost like being diagnosed again, kinda.

Scott Benner 46:26
Were you scared? When you found the show that you were gonna get your hopes up, and it wasn't gonna work? Or did you? did feel that way?

Rachel 46:35
Yeah, I was like, this is just gonna be another ride that I you know, another roller coaster ride where I try really hard. It doesn't work. And I get really frustrated, and I have to push it all back down again.

Scott Benner 46:44
I've never considered that before. Yeah, that's a that's obvious now that you said it.

Rachel 46:51
It was hard. And I was really skeptical. At first, I was like, I will listen to say that I listened. But then I mean, all offense lenders, many people will say it's just like, it's so true. It hits home, like everyone tells you to be so afraid of insulin. And I definitely was like, I remember, you know, any Bolus over four units made me a little freaked out. I was like, whoa. Because I mean, when I was using it the way in which I was yes, that was going to result in like a big time low. I'm glad that that as I eat

Scott Benner 47:22
Yeah, that episode said episode 11. Right. Yeah, that I'm so happy that that turned out the way that it did, because I really genuinely did not know what I was doing back then. So that was just me kind of leaning on what I knew resonated from the blog for people. Yeah, then mixed with my own feelings. But yeah, I guess I'm just looking back like, I'm, your story's really great. I'm not making this about me. But I'm looking back for a second and hearing how it's helped you. And I'm fresh, very fresh. In 200, Facebook comments from people telling similar stories on that, that Omnipod posts that I was telling you about? And it's hard not to think. Like, what if I didn't do a good job on episode 11? Would none of this have happened for any of these people? Like this way? Do you know what I mean? Like, it makes it feel like in the moment you're doing it, like, Oh, I hope this works. And then in hindsight, like, wow, I'm glad that worked. Because now I'm aware of what there is to lose more. Yeah, you know, I mean, like writing the blog, I've said this before it writing the blog, you get a handful of notes a month, hey, this really helps me thank you my onesies better, blah, blah, blah. But with the podcast, reaching so many people in so many places, it happens all day long, constantly. And then you become I mean, then I've become very aware of that. And so I'm now I'm suddenly thinking like, Thank God that past Scott got that right, by mistake, because I definitely didn't do it on purpose. I was not. I wasn't very good at it back then. I don't think, you know, as I say that, I realized that an hour and a half ago, a post a post a an episode went up with a 14 year old girl from Russia. And you have to listen to that one. Anyone who's listening. It's called From Russia with sarcasm. So not only is this girl, like my doppelganger, like I want to, I wanted to like the doctor. But which by the way, she has parents. It's not like she was looking for adoption. But, but it's episode 487. If I'm remembering off the top of my head correctly, she finds the podcast at 14 years old, educates herself on everything driven by One thought. And that was that her belief was that if you had diabetes, you'd lose your limbs. So she so at 14 She was like I have to figure out how to keep my body parts. She found the podcast educated herself, when to her parents made them get her Omnipod and Dexcom. Even though I believe they're not available, where she lives

Rachel 50:15
in some countries, like that's a thing to like, quiet. They don't have good management like resources. And it's frustrating. Yeah, no,

Scott Benner 50:23
but it's just that this girl just, she's astonishing. And, and funny. Listen, yeah, she's really something else. And it just made me. You know, I like so right now. She's the person I think of in this moment, because it's fresh in my head. But it'll be somebody different in a week. And I'm very grateful that that you found it. So cool. It really is wonderful. You just don't expect something like this to happen. You would think that it would take a plan. You know what I mean? Not not just the person going like, well, the blog worked. I wonder if I could make a podcast out of it. So

Rachel 51:07
yeah, I'm really glad that you did. Cuz it's definitely you know, it's accessible as podcasts and podcasts are super popular. And I don't know, I like going back to the beginning of the show and seeing how it transformed. I don't think you're bad at it then at all. I think you you got different technology. I think you know better. You learned like, as you went and I think it's really cool to watch the evolution of the show. Oh,

Scott Benner 51:29
then everybody should binge the podcast. I wholeheartedly agree. Started episode one, episode one with Adam Lasher. Yeah. And I only remember that he you know, it's funny. That might be the only episode I know for certain what number it is maybe bold with insulins 11. Adam, last year's one. But I started off with this episode I had, and then I I guess I can say it now but it's been seven years ago. Like Adam, last year was this musician who was on American Idol had type one diabetes. And I think his uncle's Carlos Santana, if I'm remembering correctly. And anyway, I saw him on TV. And I reached out to him. And I may have acted like the podcast was more than it was at that time. Oh, my goodness, but did joke's on me now because everyone starts with episode one. Yeah. So it worked out for him at least. And, and it's when is the first time I was like, go talking to peoples like, cool. Cuz I had recorded a couple of standalone ones at that point. And I was like, Oh, I like talking to people. This is a good idea.

Rachel 52:37
Everyone has a different story. And it's really cool to hear. And that was like, another thing that I so enjoyed was like, people were talking about things that happened to me. And I had never, I mean, at that point, before encountering the podcast, it's not that I didn't have good community, because my friends were very understanding. But none of them had type one. And I didn't really know anybody who did. And I wasn't ashamed or embarrassed or any of the above, I just didn't know anybody who could relate to me. And listening to the podcast, people talking about the tech that I was using new ideas, it made me care again, I was like, oh, there's like a whole group of people and the Facebook group that you mentioned. I mean, that's exceptional, like just the community. And the fact that I've had certain like circumstances happen where I had no one to go to. And you can now go to the Facebook group type in a word, like, let's say you want to take a new medication, and you're worried like how it affects your diabetes, I mean, understanding that it affects everyone differently. But I can type it in and find similar experiences, where I can at least have an idea of what it might look like for my diabetes. And it's insane.

Scott Benner 53:46
I tell you a story about the podcast about the Facebook group that. So I'm this, I'll do it quickly. My son is taking a gap semester, but he's a college baseball player. And he wanted to go to this place called driveline baseball in Washington to work out. So we had saved money not sending him to school, and it seemed like we could handle that. And we got him time to start a day to start on. And then the housing that was available for the athletes was not available for the first week that he had to be there. So I didn't know what to do. And I went online, just kind of looking for a hotel. It was expensive, and I didn't like it wasn't my choice to do that. But I was like, Well, this is the only option, you know, and I found stuff that wasn't sketchy, but it was like I couldn't get so far away from me. I couldn't figure out what was the right decision. And so I went to the Facebook group and I just said Does anyone live around Kent, Washington? And maybe a dozen people answered me and so at first I was like, well, that's weird. It made me want to post again, like pick a random town in another state and be like, Does anyone live near here? Like I'm like how big is this podcast is how I was thinking about it, you know what I mean? But people came back and I recognized one of the respondents as somebody I had interviewed. And so because I had some comfort level with him, because I'd spoken to him for an hour, I messaged him, and we spoke offline, you know. And we're on the phone together. And I'm asking other questions. And during the conversation, he just says, you can just stay here. Oh, and I was like, what? And he goes my house, you could you and your son could just stay at my house for the week, you can get him settled, and then you can leave and he can go do what he's going to do. And I, and I was like, No, that doesn't make like, no, like, thank you. That's very kind, but and then he insisted a little bit. And I said, Okay, thanks. So, we flew out to Washington State from New Jersey, and landed in the evening on Saturday, didn't get to his house to 11pm walked in, I immediately felt comfortable. He was comfortable. It was really something we spent eight nights at his house. They made us food we talked, it was a really like amazing experience. I got to watch. I got to watch like how the podcast helped this family, I got to see where they struggle, like I think I'm better. I'll be better at this now for being able to like, be a fly on the wall in their life in a mean, and but overall, it just, it's stunning. Like I was floored that somebody would say that. But but that's cool. Yeah. But I think that's what this whole thing is done.

Rachel 56:33
I agree. I mean, I feel like I could ask anybody anything in that group. I mean, when you go through something like type one, I just I don't believe I mean, I'm sure there are but like, I've never met anybody who's not a great person with type one or affected by it. Because it just like, forces you. I honestly, I don't even know what it is. But everyone's nice. And I want to read that story.

Scott Benner 56:57
Yeah, I was just I was really touched. But my point is that I didn't. Like I've never imagined that in my life. And that's not something like you guys don't know me that well. But that is not something I would normally do. Like when we were leaving. We're like sitting on the plane getting ready to leave and call and call goes, Hey, these people are gonna kill us right?

Rachel 57:18
Cracker on us or something? They know where we are?

Scott Benner 57:20
I don't think so. I said, Listen. And so I joked with them, I told him a couple days into the trip that that's what he said. And they're like, no, no, no. And I was like, Listen, if you aren't thinking the same thing, I don't know what's wrong with you, you should be thinking like, these two guys aren't gonna kill us. But it was, um, it was lovely. And very unexpected. It was wondering,

Rachel 57:43
did you like do they look at you for Bolus suggestions when they did things? Or like, how did that go?

Scott Benner 57:48
i i watched for a couple of days. And I and I helped if somebody asked me, and then I think it was like day three, or I was like, I really think we should change some of these Basal. And, like, do some stuff. So I tried to help. best I could. And even funnier. They use Jenny. So I was changing Basal race that Jenny said hop and that made me feel super awkward. I was like, I'm gonna tell her that. But privately, I think they weren't like it. But you know, what it showed me was that she had done a good job remotely, of helping them. Yeah, but really being there. And seeing it like live was, you could be more fine about it.

Rachel 58:33
And she can only go off of like what people even tell her to because I laugh at myself. Like sometimes I won't have the bandwidth or the ability to go in and put all these notes in for her and she still does a stellar job to be like, Okay, it looks like you ate here. It looks like you did this. And she does fantastic for like being remote. But like you're saying, I mean, if you're there and they're like, hey, every time you know, he walks a dog or like comes back in like this happens. And she doesn't know that it's like, helpful to make a change. And I'm sure she'd be like, right on

Scott Benner 59:05
Well, what I've learned from talking to people remotely is that they often don't know the things they need to tell you. And I've learned now that if they did, they might be able to make the decisions on their own. But it's it's like they don't know what's important sometimes. And a lot of people it's incredibly common when I'm speaking to people, all the things they are are directly telling you. They think these are the details that you're going to need to help them. I'm just like, I don't I don't need that. Not important. Not important. Not important. Not important. Not but then I asked my questions, bang, bang, bang, bang, bang and it might feel like you know, I don't know it might feel cold, but I'm just like, I asked my questions and I'm like, alright, well now here's what I think. And that's when you start explaining to them that you know a lot of what you're seeing, like if you've ever heard me say on the podcast, people see a lot of ghosts and they make decisions like you know, things they think are happening that aren't or that are you know that some That's real common when I talk to people the first time, they always think that they always think they know what's going wrong. They're so in the weeds. They don't even realize it sometimes. Yeah, really something. Listen, have we missed anything? I just want to make sure like we're not wrapping up wrapping up. But I want to make sure like, is there anything we haven't talked about that you want to talk about?

Rachel 1:00:23
I don't think so. Honestly, I'm just here to surely the podcast. It's great.

Scott Benner 1:00:29
Though there's no this, this, this episode is dense with important information.

Rachel 1:00:34
No, I mean, really, though, but that's like the, you know, summary of my story, I guess. It's like, I'm so grateful that this information exists. And it just changed everything for me. And I'm grateful that I can live my life with a little bit freer headspace. Like, you know, diabetes is there, and I manage it. But it's just not a huge stressor. I mean, sometimes it is because it is for everybody, like random moments, but like, overall, I don't see diabetes and my life like I see my life and diabetes is a facet of it because of this podcast. And I'm really grateful.

Scott Benner 1:01:16
Do you think you'll feel a little less warmly towards me when six months from now this episode is called not Quincy?

Rachel 1:01:22
Or something about like the dog? That'd be hilarious.

Scott Benner 1:01:27
I don't know. I'm pretty firm on not Quincy.

Rachel 1:01:31
Know, I will I won't be upset at all. I give over control of the title.

Scott Benner 1:01:37
I really do. You know, they didn't let me make the title of my book. What I wrote, I wrote a book and every word in that book I wrote except the title. They were like, That's a marketing decision. I was like, Okay,

Rachel 1:01:50
I read your book. I like it. Thank you.

Scott Benner 1:01:52
And then but that's not the point. But but thank you. The point is, is that every interview I had to give about that book, the first question was about the laundry. Why did you choose the title? No, no, they're like, so laundry is terrible, right? And I just started going, like, that's not what it's about. I just, I couldn't even like, I couldn't even tell the story anymore. It was I'm like, that's what a little bit of it's about. It's not like a like, a smidge. It's not even about anything. Like I'm not an I'm not a real writer. Like it's, you know what I mean? Like, it's, I don't know, I don't even know what to call that book. It's fun, though. Right?

Rachel 1:02:26
It was really good. I liked it.

Scott Benner 1:02:28
Touching in places. I hear people cry sometimes when they read it.

Rachel 1:02:32
It was It was touching. I mean, just thinking about. I mean, I mean, of course, the part that like I connected with was just like, where you talked about art and diagnosis. But like, I was older when I you know, experience that it made me ask my parents some questions. I was like, Hey, Mom, did you ever like, come in and try to test my blood sugar, like, in the middle of the night? And she was like, No, you wouldn't let me you woke up. Like whenever I did it.

Scott Benner 1:02:58
Well, you know what? That's that's really nice. First of all, that it made you talk to your mom and have some questions about it. But I I don't know. I don't think of that as a you're too young, I guess is what I want to say. Like for the the parenting stuff. Like he probably didn't hit you in the heart. Like I'm, I'm best suited to make ladies between like 35 and 48. Cry. Like that's my. They're my sweet spot right there.

Rachel 1:03:23
It was really sweet, though. How you talked about family in life, like the way in which you saw Cole or Arden or just things your wife said to you? I did. I mean, I don't have like, I mean, I don't have kids at this point. So like, yeah, what you're saying it didn't hit me probably as squarely as it does some people but the way in which you talked about it, I was like, Oh my goodness. I can see that. That's so sweet. Oh,

Scott Benner 1:03:44
maybe one day it'll it'll feel differently to you. Like you were like a child bride, basically. Right? So you don't need that babies yet. How old? You were like a child bride? Didn't you get mad when you're like 12 or something?

Rachel 1:03:54
No, definitely not.

Scott Benner 1:03:57
I will. Okay. How long? Have you guys been married? I forgot. Ah, we've been married for four years. Yeah, well, you're 21 Then we got married. 22. But yeah, close. That's how old Kelly was. And let me tell you something I know for certain. We were way too young to get married.

Rachel 1:04:11
It's funny, because he's older than me. And so I

Scott Benner 1:04:14
know. Don't worry that part I remember.

Rachel 1:04:16
Yeah. But I mean, I feel like I had a pretty good head on my shoulders. I don't know

Scott Benner 1:04:22
what you did. I'm sure. Now I'm sure we did, too. It's not until hindsight when you look back and go.

Rachel 1:04:27
Wow, I was a child. What was I doing? Yeah, yeah. It's it's funny to like, see. I mean, we were only four years in, but I'm sure like you're saying I'll look back and be like, Wow.

Scott Benner 1:04:40
No, I think Well, I think we had Colin Kelly was like, no, look at me. I don't know. I'll do math for real quick. 74 hours when my wife was born. Nicole was born in 2000. So this should be pretty easy. My wife was 16 when she had a baby. No, hold on. 7484 94 2014 I went too far. Anyway, so Kelly was 26 Maybe when we had a baby. That makes sense.

Rachel 1:05:04
Yep. That's how old

Scott Benner 1:05:05
I am. No. See? And are you ready to have a baby? Oh, no. Exactly what I'm telling you. Yeah, yeah, that makes sense. That's all and don't let this Quincy he's got that like nice way about him. He be able to eat like he got you to talk to him to listen to the podcast. He tells you right now might not even be doing anything you mean to be doing? He might be controlling the whole thing in some Svengali like way, which is a word. There's no way you know?

Rachel 1:05:30
I'm sure if you asked him he would say it's the other way around. Oh, it better

Scott Benner 1:05:33
be me. You're the catcher in this situation. I don't think that's a stretch, right? Do you know the word Svengali? Yes. Do you really good for you? Yeah. So how far I have like here, like the like scattershot questions that are left from the hour. They didn't ask how far of a drive was it from your house to to the event in Georgia?

Rachel 1:05:57
It was only a couple hours with Atlanta traffic?

Scott Benner 1:06:00
Yeah, oh, by the way, you people in Atlanta. I don't know what's up with that place. But build another road or ships and people out of there or something. But

Rachel 1:06:07
I 100% let Quincy drive and covered my eyes. I was like, This is ridiculous. This

Scott Benner 1:06:12
is a mess. It's like a racetrack but instead of like, but everybody has a different driving style. Because people are from like, all over the country who lived.

Rachel 1:06:20
It was ridiculous. So yeah, it was only a couple hours. But again, that was like the first GRF event I'd ever even been to or type one event. Because before I was just like, that's not cool. I'm not going.

Scott Benner 1:06:31
I don't imagine I'll ever do one of those again. Really? Well, because first of all, COVID. Yeah, right. And then secondly, JDRF significantly revamped how they do things on a local level. I don't know if they kept it quiet or not. But they fired a lot of people. I yeah, I did hear about that. Yeah, when COVID happen. And if I'm being honest, it's a little bit of a heavy lift to get me to those events. Because I think the national office isn't thrilled with me talking about what I talked about. And so it's the local places that want me that kind of have to, they have to be willing to fight the fight to get me there. I guess.

Rachel 1:07:14
See, I wonder if it's just because they partner with medical people. And if they go against what they say, then it feels wrong. I just think that's ridiculous.

Scott Benner 1:07:22
Yeah, I don't know the reason why. But I would be surprised if I end up doing unless there's some shift, you know, in thinking, which isn't out of line, but it definitely happened. But I just think I also think at this point, I have a different my I have an avenue to reach so many more people, but I just love being where there's I love being where there's so many newly diagnosed people because it feels like an opportunity to save them from what you described earlier, you know?

Rachel 1:07:52
Yeah, absolutely.

Scott Benner 1:07:54
I don't know. We'll see all of the flying around part. I do not miss. Really. Yeah,

Rachel 1:07:59
I can understand that. It's not like

Scott Benner 1:08:00
real travel. You don't get to stay anywhere. See anything. Like the most I saw of Atlanta was leaving that hotel and walking to the train station to get to the airport. This is Atlanta. Yeah. This is Atlanta. That's exactly right. It's me trying to like feed. I forget what it was. I had to get all these coins to get onto some train thing. I still have some of the coins. It's very irritating.

Rachel 1:08:24
No, no. Yeah, I'm sure because it's just so fast paced. It's just like, overwhelming.

Scott Benner 1:08:29
I wouldn't take an Uber hmm, I'm just I'm I'm not anti Uber. I'm just mold. And I don't want a stranger driving me around in their car.

Rachel 1:08:40
Anytime I have ever done it. I'm scared every time. I'm like, I wonder if this one is going to be a psycho.

Scott Benner 1:08:46
That's how I felt when I got to those people's houses. I was like, I wonder how this is gonna go. But I didn't really feel that way. I'm just kidding. Yeah, I mean, I'm sure it's great. Like I seriously, am I just like I'm an adult. And it feels like something adults don't do. But I guess that's not even right. It's just I'm just old and I don't want to change. How I do things. I would like a taxi. I want to know who to blame when it goes wrong. Okay, I want a company to sue your taxi guy touched me weird. I don't know. Does that happen? I hope that doesn't happen.

Rachel 1:09:18
I hope not. Oh my god. Imagine No,

Scott Benner 1:09:21
I that would be terrible. Okay. All right. So we've done a great job here by we mostly, I mean, you and I really enjoyed talking to you again. It was it was really nice.

Rachel 1:09:32
Yeah, thank you so much for having me on. And I'm glad you got container confused and I'm glad that I could come on to you share my side but I'm glad he also got to be on

Scott Benner 1:09:43
I am too. I really am and I I was gonna say something but now I'm not gonna say because it feels wrong. So we're done. Goodbye.

Huge thanks to Rachel for coming on the show and sharing her story with us. And a nice remembrance of Quincy. I'd like to thank touched by type one for their support, and remind you to go to touched by type one.org and find them on Instagram and Facebook. I also want to thank the Contour Next One blood glucose meter, head over to contour next one.com forward slash juice box to learn more. The Contour Next One may be cheaper in cash than you're paying right now through your insurance. That's interesting, isn't it? There are links in the show notes of your podcast player and links at juicebox podcast.com to these and all of the sponsors.

Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.