Scott Benner 4/11/25 Scott Benner 4/11/25

#1489 Fox in the Loop House: Part 6

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Understanding Insulin Sensitivity Factor

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

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

guys. Kenny Fox is with us again. You can find Kenny at Fox in the loophouse.com and today he and I are going to talk about the loop algorithm and understanding insulin sensitivity factor. 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. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure you check out drink AG, one.com/juice, box. To get this offer. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d, exchange.org/juice box and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juice, box. It should not take you more than about 10 minutes. This episode is sponsored by the tandem Moby system, which is powered by tandems, newest algorithm control iq plus technology. Tandem mobi has a predictive algorithm that helps prevent highs and lows, and is now available for ages two and up. Learn more and get started today at tandem diabetes.com/juice box. The show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get ever since cgm.com/juicebox, Ken, welcome back. Hey, Scott. What are we going to talk about today? I just, I decided with you, I'm just going to say what are we going to talk about today? And let you

Kenny Fox 2:34
take the wheel. You got it all right. So I think I want to talk about ISF. We covered basal and then meals, and we didn't talk about the carb ratio last time as much. But I think people have a pretty good understanding of I want more insulin for the first few hours of my food, and it can tweak the carb ratio from there. So really, what's left is in terms of main like core settings, we'll talk about ISF, which is insulin sensitivity factor. That one is, I think, one of the more misunderstood variables. I've heard doctors and other folks talk about it in the same way they talk about basal when they don't understand something, when they understand why you're high. A lot of people go to, I don't know, let's just change the basal. Once you get into looping and you can wrap your head around basal changes, it often becomes, well, ISF is even more mysterious. I don't understand this one, so let's change that one. If stuff's not going the way I want, that's a little bit tricky of a situation when you're when you're like that. And so we'll try to demystify that a bit more. Okay. Do you find that same problem when people are not understanding it's easier to see when they first start out, but they start attributing certain problems that from an experienced person don't make sense, but they just start messing with things because they don't under it's the thing they least understand.

Scott Benner 3:47
I think that you get frustrated and they just start turning knobs, pushing buttons. That's fair. I think they don't know why they're doing what they're doing honestly. And listen, in fairness. There are times when I make adjustments and I'm like, I think this might be it, but I'm not 100% certain. I mean, look, can I look at basal and say, you know, at times where there's no active insulin and no food involved, and can I look and say, Hey, her blood sugar has been sitting at 110 at this time of night, for example, really consistently. I'm gonna, like, tweak the basal here and see what happens. Yes, right? But it's harder to see, like, insulin sensitivity stuff and correction factor like that. I think is harder for people to see. Do you not agree that one? Yeah,

Kenny Fox 4:33
yeah, I agree. Because I think basal we can, I think, relatively quickly, wrap our heads around, especially at night. That's a nice one. Sensitivity is a challenging one, also, because when you first get diagnosed, you're talking about making corrections. So you like, here's your long acting or your basal settings, here's a carb ratio to start with, and then here's this correction factor, or this number you'll use to calculate how much extra insulin to give if you end up higher. Then you should be a few hours after eating, or just a few hours after your last dose. What happens is, we take that idea over to an automated system like loop. One of the things loop is doing is it's making those small adjustments. If you're if it thinks you're going to end up a little higher, a little low. It's doing that every five minutes, so you end up needing to use a number that's much larger than the number you might use when the doctor says, Hey, try this out. You know, you consult that number couple times a day. You're not looking every five minutes. You're looking every couple hours to see if you need to make a correction, potentially, and using that number then. So I think that's a one, one big difference between the idea when you use it or shots or MDI, or even standard pumping, versus using it in a system like loop. You

Scott Benner 5:48
know, when people get put on a regular system where they're doing MDI, and someone says, We think that one unit moves your blood sugar, I don't know, you know, 200 points, so your insulin sensitivity is 200 Sure, they probably try that in the beginning, right? They're probably like, Oh, my kids, got a 300 blood sugar. I want it to be 100 I'll put in a unit, because they said it moves 200 doesn't take you long to figure out that, like, higher blood sugars kind of need more insulin, okay? If that's true, and I want to move 50 points, and I need a quarter of unit, that usually works if I'm, you know, I'm 100 and I'm 150 and I want to be 100 a quarter of a unit kind of moves me that way. But you don't really see the full picture or the full value until you're on an algorithm, and that thing isn't making these big, sweeping decisions like that, like, you know, I'm trying to move a number this, you know, 200 points when it's trying to move a number 10 points, when it's trying to move a number 20 points, and there's a fraction of an amount of that insulin, like, there's where it becomes, I mean, another level tool, because you're never going to, as a person with a syringe or even with a manual pump, say to yourself, I want to move just this much, and it's 15 points, and my pump is not even set up to, like, correct that Number. So I don't think it comes into people's minds that often. Yeah, and

Kenny Fox 7:03
you're probably going to wait and see how things settle before you make a decision to add more or take away right insulin. So yeah, that makes sense. You're just not going to make the decisions that fast. One, because you have a life to live. And two, you do need to let stuff kind of play out. And there's so much very variability that in food or whatever else is going on that doesn't make sense for you to try and do, you know, quarter unit or 10th of a unit, two weeks all the time,

Scott Benner 7:27
even if you were a machine in your mind, and you could make sense of that bigger picture, you can't take insulin away in a manual pump. Well, you can, but now you're setting, like, Temp Basal offs and, you know, but if you're MDI, you're you're done, like, the insulin is in, it's in, right?

Kenny Fox 7:41
Yeah, you're not gonna set a 30 minute half hour, 30 minute Temp Basal off, and then come back and check it again, and then you end up a little high. So you're not gonna play with it that often, like a system would. And I

Scott Benner 7:51
think for those reasons, that's maybe the least considered setting sometimes for people, and it ends up being very important. Yeah, I agree. And once you see it work on an algorithm, you level up your understanding of it too. Why would you settle for changing your CGM every few weeks when you can have 365 days of reliable glucose data? Today's episode is sponsored by the ever since 365 it is the only CGM with a tiny sensor that lasts a full year, sitting comfortably under your skin with no more frequent sensor changes and essentially no compression lows. For one year, you'll get your CGM data in real time on your phone, smart watch, Android or iOS, even an Apple Watch predictive high and low alerts let you know where your glucose is headed before it gets there. So there's no surprises, just confidence, and you can instantly share that data with your healthcare provider or your family. You're going to get one year of reliable data without all those sensor changes. That's the ever since 365 gentle on your skin, strong for your life. One sensor a year that gives you one less thing to worry about, head now to ever sense, cgm.com/juicebox, to get started, let's talk about the tandem Moby insulin pump from today's sponsor tandem diabetes care. Their newest algorithm control, iq plus technology and the new tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto Bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandemobi gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandem diabetes.com/juicebox, when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about tandems. Tiny pump that. Big on control tandem diabetes.com/juicebox the tandem Moby system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range and address high blood sugars with auto Bolus.

Kenny Fox 10:16
In our previous talk, we discussed a lot of variables that I think you made a good connection of. It's really applies to however you manage. If you can start to understand those, we start to remove what I kind of call the fog, and you can really see what the settings need to be, because you're like, Oh, well, I'm high because, oh, I forgot to handle fat and protein to my meal or basal was off last night. So it's probably not going to be so great today, things like that. Maybe your pump site is not working as well as it could. So that's going to be once you remove all of those. Then we can talk about sensitivity. And we talk about sensitivity, the number is, I'll use the word points. I like using the word points as well. How many points is your blood sugar going to move given one unit of insulin? And what you need to remember is you need to consider the entire runtime of that insulin, or the duration of it, which should be about six hours, and loop models that so to do an ISF test, you'd have to get kind of high, have really good basal, have no other fat and protein going on. So it's really got to be quite a few hours since you ate last, and then give half a unit, or a unit, and then wait five, six hours, see how far your blood sugar drops. And then you can, if you did a half a unit, you'd have to, you know, double it to get to the right number. And so it's a really difficult test to do, because who really wants to sit still and have really perfect basal for the, you know, first for a 678, hour duration. You know, it's interesting

Scott Benner 11:42
when you talk about it in context of the algorithm, of any of these algorithms, right? Like it makes so much sense, because you know that that those little machines are tracking all of the different boluses and all of their different outcomes and and making sense of them when you try to imagine doing that manually. I mean, you can maybe keep track of a couple like, you know, like I Bolus at 8am for breakfast, then I Bolus again at 10 o'clock for this, and then I had lunch at one. At one o'clock, I'm five hours after the eight o'clock Bolus. Like no one's in their mind juggling all that anymore and all the implications and the different timelines that the insulin is running on it's why all these systems are just so next level. So I would need a computer right now, if you're looking for that kind of control and that kind of consistency, then, yeah, I mean, you need something smarter than you to track it. That's for sure, smarter than me, for sure. We

Kenny Fox 12:35
talk about points, just in case people aren't tracking we're talking about milligrams per deciliter for those using Imperial numbers and millimoles for those that are not. And it's an easier way to say it, because if you start trying to talk about the ratios here in an audio setting, you're not going to be able to track all this stuff. So I have a video that's been up on YouTube about how ISF affects carb absorption, and we're gonna talk about that here in a second. So you guys can go see that a few more visuals. But the big challenge we have when we talk about using ISF, or figuring out ISF in loop is one, you first have to shed the idea that it's the same number that I'm going to use like I would if I checked my blood sugar every couple of hours and was high and wanted to nudge blood sugar down. And two, it's going to be even bigger. If you think, Well, how much will my blood sugar come down if I dose the unit and waited six hours when I really didn't have any of these other things we've been talking about active that's when it's like, Oh, I'd probably come down quite a bit. The ISF number you'd think of would be a fairly large number, which means you'd move a lot of points given one unit of insulin compared to what you'd use in a situation where you're high, you're usually addressing something like food or some other issue where you do need more insulin. I think a lot of people, at least those that listen to the podcast, get a very intuitive sense, after some practice, that even if they don't know what that variable is, they might need a decent amount of insulin to bring it down, or may want to bring it down sooner than six hours. So what loop is looking at is is a much larger number than what you're used to. When I see people bring over their settings from a previous pump set up, it ends up causing a little bit of problem because the number ends up being too small. And it's not a problem always of too much in terms of a correction, like getting high, and the loop just gives too much insulin. That does happen. But I think a more common situation is it's just a little bit too strong, a little bit too small of a number, and it negatively impacts how loop tracks meals. And that's really like the in my mind, the largest or most significant thing that ISF does during the day. But before we dive into that, it's easier to talk about the easier situation, which is night time, like you talked about identifying basal overnight. At night, you're not running around, you're not eating anything. You might have some some hormone stuff going on overnight, but it's not as significant. So what I like to do is all use ISF overnight, and I'll often make it a little bit stronger, so where I get the system to respond the way. I would, which is you have a little bit too much insulin, enough insulin that after six hours would probably make you a little low, but not so much that once your blood sugar starts trending down, Luke predicts, Oh, this isn't going to go well. We're going to go low, and it starts turning off the basal. And so it's kind of like a like a mild crush and catch situation, like you talked about here.

Scott Benner 15:19
Is it easy to go too far with that, to where it can't catch it.

Kenny Fox 15:23
Yeah, I think it, I don't know. It's super easy. If you move things in steps of 5% 10% at a time, and kind of nudge the numbers down, then I think you end up being in a situation where that's not going to be the problem. One thing to look for is if you see, even if your basal is not perfect, but if you see loop giving Bolus is and then start dropping, and it's not turning the basal off to be able to catch it, it just goes down so fast that even though it turned off the basal, it couldn't catch it. And again, there's no obvious basal problem. Then, yeah, you'll need to back it off a bit. Okay, that said, I think for other systems like Android APS or trio that use the O ref based algorithm that's different from loop. I think it works better, from what I've heard, to use a single sensitivity number across all 24 hours. And I think you could do that with loop too, if you had pretty good basal and we go with a number that works across both day and night. I think you can do that, but I'd like to use slightly lower numbers at night, just in case things go wrong, like Tessa has a basal increase need and she starts kind of drifting up. And I want loop to kind of keep it contained, to keep it from getting up over maybe 121, 30, even if it's like a big change in basal needs. And so I just give loop a little more permission to kind of hammer out that blood sugar, but starts to drift high, but if it starts causing any problems and it can't catch the resulting drop, then definitely back it off. It's definitely the safest thing to do is to leave it as a larger number overnight, rather than smaller. You know,

Scott Benner 16:51
you talk about pretty frequently the idea of giving loop the autonomy to make a more aggressive move if it needs to. But I think that could be confusing to people. So like, if they're wearing a regular pump, and their basal, empirically, is one unit an hour, we just know that it is, you know, for the conversation, if they make it 1.25 an hour, they're going to get low pretty quickly in a couple of hours. If you tell loop, you know, if you're saying to yourself, I think my basal is one an hour, but you tell loop it's 1.25 Are you saying that loop is going to push, push, push until it sees a low and then take it away and then next time not push is hard because you've given it like a wider decision tree to use right like, as far as the amount of basal goes. But it doesn't necessarily mean it's going to use all of it.

Kenny Fox 17:36
Basal is tricky. Basal, unfortunately, with the way loop is built. Right now, if the basal is off, if you went with a one and a quarter instead of a one heat at an hour, at some point, you're very likely to go low, because loop is assuming that the insulin on board that it sees of, let's say zero, is going to keep you flat. But if your insulin, if your basal is too high, you're going to just start drifting down and loops like, Well, no, you should be straight, and you keep dropping. It's like, No, you should be straight and you keep and you keep dropping. And then if you look like you're going to drop below the glucose safety limit, then it starts to turn the basal off, and you start to get negative insulin on board. But it's still always like, Well, you said basal was one and a quarter, and we now have negative insulin on board. You're going to go up. And so as soon as you do start coming up, when you treat the low, then it comes back. You end up hit. You end up getting over treated. Yeah, so basal is a tricky one. That's not as safe a one to overstate, there's some work being done right now about trying to adjust how the negative insulin on board affects the prediction so loop doesn't think you're gonna come shooting up and then hammering you with us quite as much insulin and send you back low. But yeah, there's not a lot of forgiveness in the system, as it's designed today, around basal. This is why I like to turn down the sensitivity, because it only comes into play if your blood sugar, you know, is higher than the defined range. Basically, if you're high, if you're low, or you're in range of where you told the system you want to be, then the there's no correction or sensitivity nudges that need to happen so it stays out of the way, so it's a little safer in that sense, that you can hover around your range, and it's not going to just all of a sudden shoot you down low, okay, but if you start creeping up a little bit, it can nudge a little bit with sensitivity number. I just

Scott Benner 19:13
want to make sure people understood that, so you can't just tell that. You know, I know my basal is one, but here take more in case you want to use it a different way. It's not going to work that way. It's going to push you too low. Going to push you too low. Correct with sensitivity, though, if you say a unit moves you 100 points, and you then come back and tell them, like, hey, you know what? Instead, like, let's say a unit moves you a different amount, so that you have a little more autonomy in here. So if you wanted it to have more autonomy, and you were one unit moves you 100 points. Would you want to make it one unit makes you 90 or moves you 110 to make it more aggressive?

Kenny Fox 19:48
More aggressive would be 90, the smaller number. And the nice thing is, loop has other pieces to its prediction, one of them being momentum. So if you're if it does. Does get you with an amount of insulin for the 90 and you start dropping, loop does presume, oh, well, you're moving down. You'll probably keep moving down a little bit. So that tends to push the prediction down a little bit lower, faster. So it's not going to just give the 90 dose and then wait for it to settle. If you start moving down right away, it's going to try to pull back. So that's why it's a little bit safer to do. But more aggressive is definitely a smaller number that you'd pick.

Scott Benner 20:25
Okay, I just listen. I want to be clear. I know that I just wanted to say it out loud so that people could hear it right. Because I get the idea of like, oh, I want to give it a little more, a couple more bullets in its bag if it wants to pull it out and start and start shooting. It doesn't work there. Now this might be, I don't want to get too far off the course here, but if your insulin to carb ratio is, you know, one unit covers 10, you know, you change it to one unit covers nine because you want to be a little more aggressive, that's still a thing that the loop could probably adjust within. Is that fair? Yeah,

Kenny Fox 20:56
we talked about meals before. And so if your blood sugar starts to, let's say nine. One to nine is too much, and you'd have drifting a little lower. There's still kind of speed and momentum pieces that we'll talk about more detail later. But moving here, where loop would be like, Oh, you're running a little lower. We should probably turn the basal off, and then you still have the the time window, the absorption time we talked about, that loop will expect that food. But if the nine is too much compared to the 10, you might run a little lower, but there's a chance that you might not go low, and that loop will maybe give you a little bit too much insulin here and there, but still maybe catch it. And then when that time window runs out, it's like, okay, well, we're done looking for those carbs. So it can cause a problem, but it's less likely I think, okay, I appreciate you

Scott Benner 21:39
going over that with me. Go ahead, please go back to the course you were on when I took you off course.

Kenny Fox 21:44
The sensitivity stuff's good. The other thing to remember about, about the sensitivity is that when actually, when loop doses, let's say automatic Bolus, when it gives the insulin that it thinks you need at nights. And use the example, it's only going to give a fraction of that. So if we're using a one to 100 and you end up drifting up and it wants to give you, let's say the recommendation is as much as a half a unit. It's only going to give a fraction of that. So the default setting would be, like 40% so less than half of that half unit, so like little less than a quarter unit, is what it would give. And then the next time, it will only give 40% of what's left of that recommendation. And if your blood sugar starts to curve and starts or start to come down, that recommendation will kind of disappear or will drop significantly at any given point, loops not really giving all of the whole one to 100 or one to 90 sort of sensitivity calculation, which is good, and this is also a good time to mention that there is a algorithm experiment, piece of loop, like an extra little algorithm, modification you can use that will change how that dosing occurs. It will either do 40% which is the standard automatic Bolus, or this one called glucose based partial application, which we referenced before, but it gives a smaller percentage of that recommendation when your blood sugar is closer to your defined range versus and then as you go higher, it'll give a higher percentage of that recommendation. So even though you're dialing down the sensitivity, it's never really going to give all of the insulin right away. So that's the other reason why you can say, well, if I turn it down a little bit lower than maybe it should if you were to do a full six hour test or something, there's a lot of play in there, because the system is not going to deliver in its confidence, not going to deliver everything. So it has time for your blood sugar to start to level out or start going down, and then take appropriate action. So it's something to remember. We're talking about sensitivity, and why I think it's kind of forgiving, especially at night. Yeah, to dial it down. Okay, thank you. Daytime is the trickiest part, and honestly, probably the more important one. What's interesting that I learned a couple years ago from some people smarter than me is that, if you take the sensitivity and you divide that by your carb ratio, and we'll talk about all the units, it gets a little crazy. You end up with, instead of a nice sensitivities of points per unit and carbs is grams per unit, per unit per gram. I forget which one, but if you divide the sensitivity by carb ratio, you end up getting a points per gram, which basically says, if you have one gram of carbohydrate, how many points is that expected to raise your blood sugar? And so now operates off this assumption that a certain amount of carb is going to raise your blood sugar a certain amount. So if you ever go into loop and you enter 10 grams, and then you see the prediction says you're going to go up to a certain number, let's say 500 that's the assumption, if you don't give any insulin. And I always wondered, how did it come up with that number? Well, it's using your sensitivity divided by your carb ratio. And so with that expectation, when your blood sugar does go up after you enter a meal and start eating, as your blood sugar goes up, loop says, Hey, that rise equates to this many carbs. Now. Says, Okay, let's say it's five carbs. It's going to subtract five carbs from the active carbs, from the carb entries we discussed last time. And so that's how it's one other main piece, how it's subtracting the active carbs, or the carbs being absorbed, as the other term loop uses. It's tracking the meal progress based on how much your blood sugar goes up, is one of those major components. So if you have your sensitivity set to too small of a number, this affects your points per gram. The short version is, without trying to talk about all the units, because you really got to see it on the page, is that when your sensitivity is too small, loop sees a lot more carbs when it goes up. And the picture I like to give is a small child might have a sensitivity of 200 or more, and you give them one Skittle, and their blood sugar pops up maybe 15 points for that Skittle, you grab a middle schooler or high schooler, some bigger person, give them a Skittle and their blood sugar is long gonna pop up a couple points. They just don't go up as high for each gram you give them, or we discussed before. You know, you used to have to save Tessa from a low with just a couple grams, and now it takes quite a bit more if she's going low with any substance. I think that's an important concept to wrap your head around, that the less sensitive you are to insulin, the smaller that sensitivity, the less sensitive you are to carbs as well. There used to

Scott Benner 26:18
be times where I'd be like, just drink a quarter of this juice box. That's all, yeah, take three sips. That'll fix it. Now I'm like, just here. Just drink it. Drink the whole thing, yeah, just drink this, and then we'll see what happens. And we've talked about it already, I think, but just over, like, go over it again, mostly that's body mass, or it's also the amount of insulin you think. Do you think some people are just making more insulin as they're younger or more newly diagnosed, and then that goes away over time too. Like, what are all the variables that you think impact

Kenny Fox 26:47
that? Yeah, that's a good question. I think, I think it's all of those things. I think when Tessa was younger, she probably still had some beta cell function. There's even times, I think recently, it's been a while since I've seen this, but I thought I would try to get an ISF test in while Tessa was sleeping. I just give her some of her like, honey. I give her at night, while she's sleeping, she'd never wake up and her shoot her blood sugar up, and then I could give her some insulin and kind of see how far she comes down, you know, maybe, like, three in the morning or something. And I've seen it where I give her the 345, grams of honey, and she pops up and pops right back down. Like, well, obviously there's some body function here that's taking care of this, because it wasn't loop and it wasn't me, so I think that plays into it, and why, I think it's also difficult to get these tests in. But I'm sure body mass is a big one, right? It's there tends to be a relationship between body mass and how much insulin you generally use and how much basal you often use. I think those are two big pieces, and then there's always, like diet plays into it too. How much you're know you can modify your insulin sensitivity with reducing fat in your diet, as a recent study that was coming out, so reducing the your fat intake will improve or increase your insulin sensitivity. So I think there's a lot of factors that are really hard to nail down, but I think body mass as a good placeholder, at least in my mind, from a little child to a big child or an

Scott Benner 28:04
adult just changes. Oh, there's too much to think about. Again. That's all there is.

Kenny Fox 28:09
There's a lot to think about. So the main thing that I want to use, that I encourage people to try to use the daytime ISF for one, let's just acknowledge that it's really hard to test for, and it's a pain in the butt. So what I like to do is I use the sensitivity during the day. I make one rate that covers the daytime, or at least the hours that you could be entering and eating carbs, and then use that number to help you get to the absorption you want. So we talked about using the ice cream all the absorption stuff in the last episode. So I think most people, especially listen to the podcast, will have a good sense for how much their carb ratio should be. Generally, like, if you're not getting enough in the beginning of your meal, you end up a little high with proper pre bossing. And so you they people tend to adjust that down. I think people end up with a fairly aggressive carb ratio if they're listeners of the podcast. And most people that come to me are in that boat too. And so once you feel like the beginning of the meal is good, but then you're noticing that either the carbs are absorbing too slow, meaning loop gets to the very end of the time window for your food, and it still didn't see nearly enough carbs, or the opposite, you get to the end of the time window, and loop saw way too many carbs being absorbed for that meal, that's going to be a sensitivity problem. So I like to find a sensitivity number that helps us get to where most of the list of cars on that carb screen are absorbing pretty well, all within their expected time frames, not too long, not too short. And just change that one number and dial it in. So if we're happy with how much in summer getting the beginning of a meal, and you adjust the sensitivity to get to a spot where loop says, Yep, that meal is over at the right time. Most of the time, you're not going to get it all perfect, but you're going to get it done pretty well. I think that's a guiding principle that's helped me and helped others when I talk about how to use sensitivity, because you can talk about, you know, how much is it correct and how much is it fixing things? Yes, I think if you get the meals mostly finishing right, and you do a pretty good job of counting the meals and the fat and the protein, that's like the major variable we have to deal with in the day. So if we can just nail that, and I think everything else kind of falls into place. And you know thing, you might go a little higher, a little lower here and there for some other reason, but meals are going to look good, and loop is going to do what you want it to do the vast majority of the time. Yeah,

Scott Benner 30:23
do you think you could go back and do this manually? Oh, like just being on MDI. You mean, I put tests on a manual pump. How much of this do you think you could mimic per success?

Kenny Fox 30:33
I think a fair amount of it, because you've covered most of the core components with Jenny talking about fat and protein. And if you can take care of pretty good carb ratio and expecting the fat and protein and dosing for it, I think you're going to get very similar results to what loop will do with decent settings. I think the biggest thing that loop makes a big difference is protecting against lows. Like you mentioned before, you're not gonna sit there and turn off the basal all the time, right? The other one, someone mentioned to me that was working with they came from the tandem pump, and we did the had the same problem when we were using the tandem you could only extend meals in the tandem pump like they have one extension running. You can do the same with any any pump. You can't extend another Bolus on top of a currently running extension. And that's kind of the for me, kind of the magic with loop, with the way Tessa eats sometimes, is she'll have decent amount of fat and protein for multiple meals in a row and so but they're overlapping each other. You want the insulin to extend and handle that fat and protein over a fairly long period of time, but then she ends up eating again, and the fat and protein impacts not done. Release the dosing for it's not done. And so what loop and other systems like this help with is you can just say, enter a long meal, a pizza icon, you know, the long meal, and then enter another long meal. She gets seconds, enter another long meal, and loop sort of handles that extension in response to blood sugar. And if you get this ISF stuff working well, then, you know, four hours after she's eaten, it's going to, know, a pretty good amount of insulin to give for the fat and protein without giving too much. And that's, I think, what takes a lot of the burden off or managing food with a system like this, is that you don't have to worry about, are we extending? Is this to the extension still going? And do we need to cancel that extension and add more insulin in to cover the last extension, and then also extend into this food. So I think that that really helps a lot with how Tessa eats, just that she makes she doesn't eat frequently, or meals are overlapping with each other with respect to the fat and protein window of time that the impact is there. And so it's just it helps a lot for tracking meals that way or lack of tracking. I don't have to do the tracking. We just enter it and move on so we could do it. But I don't know how well Tessa could do it on her own, whereas, right now, she just enters it and she moves on with her day, and it's usually pretty fine. What about you? What about you guys? You know, our needs a lot different, right? She spreads out her meals, sometimes fairly frequently. Yeah.

Scott Benner 33:00
Kenny. I mean, could I go back and do it again with the same success if you give me a child young enough that doesn't have opinions and, you know, doesn't fight back, you know, when you say, do something right, I could easily do it and probably have better outcomes, but I think I'd be exhausted again. I think

Kenny Fox 33:19
I was thinking the same thing, you lose sleep. I think the sleep I think the sleep part is a part I didn't think about till just now is, yeah, that part is the initial magic sauce for most people, right at any automation system, is it can go to sleep and it morning turns out better than it would have if I had just gone to sleep with a regular

Scott Benner 33:35
just 1,000,000% like the the process seems to be is, you know, you have a diagnosis, or, you know, whatever, you've been at it for a while, and you just aren't having a ton of success. Somebody slaps you on one of these algorithms. And then eventually you're like, oh, it's not perfect, but I'll tell you overnight, I'm sleeping again. And then you kind of like, come back to life a little bit. You can start paying attention a little to what's happening. I do think that if you took it all away, the first thing that would happen is my sleep would get dinged. You know, I am almost 20 years older than I was when she was diagnosed. I would find myself making those concessions in the middle of the night. I'd be like, Oh, it's only 170 I gotta get some sleep. I think you'd slip back into that pretty quickly. Then I think that starts to impact the daytime again. And before you know it, you're starting the day with a high blood sugar, not enough insulin, everything starts shooting up, and you're off to the races, and you can't figure out what the hell is going on. And then you struggle all day with it, which makes you exhausted, which then puts you overnight again, into a bad situation. Try to keep up with it the best you can. If I didn't have to sleep, if I wasn't older, I know more now, like if you put me just in charge of somebody's blood sugar, I think I could manage it with an inch of its life, but I don't know how long I could do that before I dropped over dad. I just think that there are so many people out there who are not using this automation or not using it effectively, and you have no idea how much your life would change if you if you had it. And it was and it was working well for you. I really

Kenny Fox 35:02
like how you talked about that with the last episode of your caregiver series. That was great. You guys really hit that pretty good is the lack of sleep is significant burden on caregivers, especially. But you know, just as much with the people with diabetes, once they're in charge of their own blood sugar,

Scott Benner 35:19
it just runs you down. There's no way to get ahead. After a while, you think, no, it's okay. I'll figure it out. But, man, I don't know. Like, you know you're not a machine. You just can't stay ahead of it forever. So right, yeah,

Kenny Fox 35:31
I think the last thing I'd like to drill home with people is this is the most hard to grasp and see, because it's not as visually obvious a lot of times. And so my sequence of going through to figure out what might be wrong, we use the iob overnight, especially as our guide to say is basal right or basal wrong. We make basal adjustments based on we see inappropriate negative insulin on board, or those other data points we talked about in the first episode. Then if they're running high, then before you make any changes, check the pod site, make sure it's working. And then we lean on food. Are we counting things? Well, are we not forgetting to enter food? Are we adding fat and protein, all that food stuff called Food accuracy? And then if we're doing a pretty good job of counting, then, then you got to mess with the car ratio. You're going to get better results. If you're running high or running low. Once basal is good, yeah, to just make sure you get enough insulin with your food. And then, as a last resort, like if you mess with all that stuff and you tinker with it, or you just don't think any of those things need to change, because everything else looks good. Then you start playing with the sensitivity. You look at the arboration of the carb List screen and how absorption is going on, and you tinker with the ISF. But it's something that I find with a with a kid that I don't have to mess with very often, Tessa or any child, really, when you're starting younger, their sensitivity is only going to go to a smaller number. It's only going to drop as they get bigger. So that's one thing, is that if you can get a pretty good number eye sensitivity number during the day that works, then chances are you don't really have a question of whether or not it needs to go up or down. Most of the time. You're just going to say it just needs to go down if it needs to change at all, because they're just going to keep growing and getting bigger. So it is make it easier until your kids done growing, you know, early 20s or something, and then they then maybe can go up and down a little bit more. But with kids, it's pretty simple. It's only going to go down, and I really only mess with it a couple times a year when all the other stuff's not helping. So don't let the ISF confuse you and wear you down and keep playing with it all the time. Like pick a season where you have your basal dialed in and meals are looking pretty good those first few hours. You're happy with your carb ratio and you're counting. And then play with it and get it dialed in, and then you don't, don't mess with it too often. Couple times a year, revisit it and move it down a little bit. I don't want it to drain anyone's brain too much. People spend a lot of time thinking about the stuff they don't yet understand, which I appreciate. There's a lot of people that come talk to me, but I think you can just let it go a little bit and make some other adjustments, and you'll probably be

Scott Benner 38:04
okay. I'm adept at turning the knobs and making things work out, but if you listen to the voice in my head while I was doing it, you wouldn't hear this, like, quiet confidence of like, Oh, I see this number and this outcome. So I know I'm gonna make this that I've learned over time. Her blood sugar has been too high lately. I think I need a little more insulin sensitivity power. Here. I'm going to take it from where it is and make it a little more aggressive. Yeah, I don't think it's the basal. I know we Bolus well for the food, so I'm going to try this here. But you, if you're a person who isn't sure if their carb ratio is right, doesn't understand the impacts of food, basal is off by a little bit, imagine if your insulin to carb ratio is one to 10, but you have it set to one to 15, and your basal is a unit an hour, but you have it set at point eight, five, and your insulin sensitivity is like, who knows? By then, the basal is off, the carb ratio is off. All your meals are moving you around in ways that you know you can't know. Forget being on an algorithm for a second, you're going to get out of whack. And then how would you even figure out the insulin sensitivity? Like, in my mind, the basal has to be right, no matter. I think basal is always first, right. So always, yeah, your basal is first, right? Excellent, great. You eat foods that aren't high in fat, that you're really good at bolusing for that. You really know the carb counts for you count the carbs. You look at the insulin, you say, you reverse engineer. You say, Look, I know this meal for sure has 50 carbs in it and whatever, like, you know, two units always covers this. So great. So your insulin to carb ratio is one unit for 25 carbs. But that doesn't mean that the next meal you're gonna have is gonna hit the same way as that meal, but it's a great starting spot. The thing again, like Kenny keeps mentioning it, because I don't think people appreciate it enough. But if you don't understand the impacts of fat in your food and how it's pushing blood sugars up or holding blood sugars up, you really are at a loss for figuring this whole thing out. I. Know, as crazy as it sounds, but I think the one thing that throws more people off than anything else is the fat in their food.

Kenny Fox 40:05
Oh yeah, for sure. Like someone I've been working with for the full eight weeks of my session with them, and they were near the end, and their 11 year old was munching on a bunch of nuts, like fattier nuts and cashews or something like that. And they're like, yeah, she didn't really enter those a whole lot, or just the carbs for them, and then they should just ended up high, like, couple hours later. Like, do you think it was the nuts? It's like, yeah, that's like, the only reasonable explanation here, that you just kind of drifted up high and then ended up a little bit higher at dinner time. So it's just one of those things that I think happens the most frequently. Yeah, is the easiest thing to under count. And I think if you get that right, the sensitivity, if it's just in the ballpark of where it needs to be to help loops. Be to help loop see the meal, then you'll be much better off those those things are, are the basics. The basal has to be right, and if it's not, then you know, you can't really go tweaking other knobs too much until you get that dialed in with confidence, which when we covered in the first episode, I think it's one of the key things when people are working with me is I really try to hammer in on that, using the iob and getting the basal pretty right, and having confidence that it's that it's right, and then you can mess with other stuff. That way, you kind of have an order that you go through for this stuff. And I really like your idea of using predictable meals. I've had a lot of situations in the last few weeks where a nice, predictable meal turned out to not do what it normally does, and that told me that either the site was bad or some big setting needed to change that I just didn't like usually carb ratio. Just didn't know. Tesla wasn't feeling well. She said she was feeling fine, but she needed a lot more instant for her food that day. Yeah, and you just, you had to catch it. So predictable, meals are a great way to just calibrate off of I don't know where else you're

Scott Benner 41:39
supposed to start, because this idea of fasting, for a really long time, I don't know who you tell me the kid you're gonna say, Look, tomorrow morning, we're getting up, we're not eating. We're gonna get your basal worked out, like I say, figure out basal overnight. Get it close, adapt it for the morning. Once your basal is good, look harder at your carb ratios over predictable meals. Excellent. We got that. Now let's look at a blood sugar that's went up the foods out of our system, but, you know, it never came back down from 180 great time to check your insulin sensitivity. Go ahead and throw a unit in and or a half unit and see where, where do you land? And don't wait like, an hour or two, like, really, just, you know, wait a few hours, like, where does it land? It's not going to be perfect, you know, if the unit moves you 50 points, and it's about at, you know, you went from 180 to 130 and it's just resting in there. You know, there's a great place to start, to start with, yeah, and if you're on an algorithm, and you're close enough, like you said, then the algorithm there will kind of make up the difference for you, because it'll push a little bit more when it needs to push. I mean, how long do you think Kenny with the service you provide? How long do you think people have to work with you before you before you can get them in a place like that? Yeah, what

Kenny Fox 42:44
I've seen this year with the groups that I've gone through, it's been about week six or so of pretty dense conversation for the first three, four weeks, training and stuff, and then some messaging in between. But after about six weeks, they kind of get how to do the basal they've they're have a good understanding of the carb ratio and even have a good guess when it's sensitivity. If they move through that list by week eight, they're pretty solid. Those last couple weeks are just kind of letting them practice. And we go over some other topics that like. We'll cover some other pieces around the algorithm just to improve their understanding. But it's the core of it is probably about six weeks. And I emphasize that the program is training. It's like educational. It's going to be videos that you can watch, but then we're going to do like group calls. It's going to be a group coaching. You're not going to be left to just watch a video. You're going to have access to someone to ask questions and to if anyone else wants to share, you can see their data. I know people really appreciate me showing Tess data so they can kind of understand, like, it's not all sunshine and rainbows all the time, and how and when I would make changes, and just, you know, real life stuff that comes up. And so, yeah, it's about six to eight weeks. The whole program right now, I'm planning on running it for a full eight weeks. But it's, it's really start to kind of get it after about six you have time to practice. Have something go wrong, have an illness show up, have a pod site go bad, those kinds of things. There are a few people that made it the whole time and just didn't have anything significant that needed to change. And so right after we were done, and they called me and we worked through it, but a lot of it's just practice, and most people have setting changes, even just a small basal change, sometimes every couple days, sometimes multiple times a week. Sometimes you wait a week or two before you have to change anything. I think that's really important for people to see, and if they just don't need a change, it takes a little longer to practice all the stuff that you're learning. Tell people how to find you box in the loop house, com, you can sign up to get my email newsletter, so you'll know when classes open up, they're only going to open up a couple times a year. So you can jump in. You want to do some one on one instead of going through with the group. You can also find that information on my website, Fox and loop house, calm, awesome.

Scott Benner 44:55
I told somebody today, I'm like, Oh, I can't talk. I'm I'm recording. And they said, with who and I. Said Kenny. And the response I got back was more Fox in the loop house. I was like, yes, but that's just funny. I can't believe I tagged you with that. I'm so sorry. Like that I tagged you with that moniker, but, uh, I'm glad people know you that way. It's awesome. Hey, I'm gonna roll with it. It's fine, excellent. Is there anything we missed that we should have talked about here that we didn't? No, that's good. Awesome. All right, thank you, man,

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Scott Benner 4/10/25 Scott Benner 4/10/25

#1488 The Cat Has Fleas

27-year-old nurse Cassidy battles T1D, Crohn’s, hypothyroidism, and anxiety while offering a unique perspective on the hospital system.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox Podcast.

Cady is a nurse who has type one diabetes, Crohn's hypothyroidism, anxiety and an interesting take on the hospital system. We're going to talk about that and much more on today's episode. 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. I know this is going to sound crazy, but blue circle health is a non profit that's offering a totally free, virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine Vermont, New Hampshire, Ohio, Delaware, Missouri, Alabama, Mississippi, Iowa or Louisiana, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle, health.org, you know why they had to buy an ad. No one believes it's free. This episode of the juice box podcast is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, get your supplies the same way we do from us. Med, this episode of The Juicebox Podcast is sponsored by the Omnipod five. Learn more and get started today at omnipod.com/juice box. Check it out.

Cassidy 1:55
Hi. My name is Cassidy. I am 27 years old. I currently work as a registered nurse in pediatrics at a major Midwest hospital, and I'm a type one diabetic, and I have been for 15 years. Last month, those are kind of my major points. You

Scott Benner 2:16
were diagnosed when you're 12. Yes, okay, 27th the best age. You think you don't know this, but, yeah, it is okay. Yeah, what were you gonna say? What about it?

Cassidy 2:29
This year has been a little rough, but it's been good, but it's been like a roller coaster of, like, good news, bad news, good news. You know, we'll

Scott Benner 2:37
find out about that, yeah, but I'll give you my thoughts, and you'll tell me why I'm wrong. It sounds good. The best conversations are when I say something and then people are going, I don't know, man, I don't know about Yeah. So my theory on like 27 is this, you're not married, right? I just got engaged last month. I hear the joy in your voice still, so I know you're not married, correct, right? Yeah, there's still time. Oh, yeah, I can tell you don't have kids. I know you're not married, but you're not 24 and, like, confused and trying to figure everything out, and you're not 35 and have a mortgage and are like, right, yeah. And I've had the same argument with somebody, like, 17 times. There's still, like,

Cassidy 3:16
some optimism there. You can hear, Oh, yeah, no, you

Scott Benner 3:19
have, there's a lilt in your voice. It's lovely and so and you know enough words, but not all of them yet. So life's not completely boring, like you still hear things that you're like, Oh, I didn't know that. Yeah, exactly, yeah. This is it right here. This is your golden age. You won't recognize it until it's too late. And you look back and you think, Oh, damn. What about 28 How do you feel about 28 you still have time right in here.

Cassidy 3:45
Okay, okay, okay. When does it end? When you're 30, it ends

Scott Benner 3:49
as things pile on top of you, yeah, and then it turns into something else, like so you still haven't like you haven't had an argument yet with your fiance's Mom, where neither of you actually said what you meant, but you're both trying to get something you want at the wedding. And like, you haven't, like, I don't know, like, you know what I mean. Like, you haven't woken up in the morning and been like, Oh, there he is again.

Cassidy 4:16
You didn't go home. Okay? You haven't

Scott Benner 4:19
woken up yet and had him look at you and go, Oh, okay. See it on his face where he's like, Oh, I can't leave. And you're thinking, like, oh, I can't leave either. And then you buy a cat, but the cat gets, like, some like disorder, and there's like, a chunk of your Yeah, right. So weird that

Cassidy 4:39
you say that, because, literally, like a month ago, my fiance's friend, they adopted a cat, or rather, they found a cat behind like a dumpster, and it had fleas. And my fiance went over to his house, didn't know the cat had fleas, came home. Guess whose cat? Has fleas. Now, the

Scott Benner 5:01
cat has fleas is the name of your episode, by the way. Cassidy, oh, that's incredible, unless you say something awesome between now and the end, I'm not kidding, right? Like the cat has fleas is going to take you a month, and you're basing the cat, oh, yeah, right. And

Cassidy 5:19
there's a month. Oh, three months. Yeah,

Scott Benner 5:21
you're gonna have to replace a sofa at some point. And then, like, and it'll be fun, like, there'll be these small memories in it where you and your fiance, uh, you know, bathing the flea cat, and you're laughing. Like, how did this happen? Except you don't realize that the energy you use to bathe the flea cat is the energy you were gonna use to have sex, right? And then you Yeah, and then things drift into different, like, directions, and, you know, then someone gets sick. Doesn't even have to be you. It could be a person in your life. It beats you up a little bit. You're gonna have a friend who gets into a bad relationship. You're gonna end up spending six months helping her. Like, your car is gonna, like, not work, and the dealership is going to screw you and like, and then just one day, you wake up and you go to stand up, and all that weights just like, on you somehow, and you That's it. This is the time. So it's really looking up from here. Is what you're telling me. I'm telling you, no, you're missing the point. The point is, enjoy, yeah, now is then. Do you understand what I'm saying? Yes, I understand what you're saying. All right, get in there. Do something fun. Have you ever wanted a trip somewhere you kind of can't afford it, a little go, like that kind of stuff, yeah? But please be saving money for the future at the same time,

Cassidy 6:38
also that in this economy.

Scott Benner 6:41
Let me ask you a question. Any chance you'll be able to afford a house, you're a nurse, like you have a real job, you get paid, right? Like

Cassidy 6:48
I do have a real job now. So nice. I mean, yes, I think what we're going to be able to buy is going to be like not our

Scott Benner 6:56
dream. Gonna come with its own fleas. It's probably gonna come

Cassidy 7:00
with its own, please, but we already know how to treat it. So, I mean, we have back on for us, right? I mean, I think this is the first time in my life where I felt like, oh, okay, like I'm not completely just like scraping by, where it's like, truly living like paycheck to paycheck. Yeah, because when I was in nursing school, I was working as, like a PCA, so I was a nurse's aide, and they don't get paid a lot. And I was also working part time, and then in full time school, and I was in an accelerated bachelor's program, so I did my full BSN in 18 months. During that time, I had, like, no money at all. And then before that, I was a barista for four years. So

Scott Benner 7:43
you made people coffees for four years? Yeah, I'm sorry. Okay, it

Cassidy 7:49
was honestly, if it paid the bills. I love it. It's so fun to make coffee, I think. But also, I worked at a cafe in Seattle for a little bit, and so it was like, literally, like, the quintessential, like, exactly what the experience that everyone dreams of, right? Like, as a barista, anyway, not everyone dreams. Obviously, you don't dream.

Scott Benner 8:12
I thought everyone dreams to be a barista. In Seattle, that's crazy.

Cassidy 8:16
If you were gonna be a barista, where would you want to be a barista? I

Scott Benner 8:20
mean, I don't know, in my dreams, you all go tell five other people about the podcast. So, okay, fair enough. Yeah, I don't know. My dreams are different than yours. I don't know. Like serving people coffee makes it makes me feel like I wouldn't enjoy that. I

Cassidy 8:36
think so. I mean, you know, you get it's, it's, it's like any other customer service job that I love. What was fun about it just the like, learning about different coffee learning how to make like latte art and like suggest different things to people. Also, it's different than working at like a restaurant, because when people walk into a restaurant, they're like, hungry and maybe hangry and so, but when people come to get coffee, they're like, Oh, this is the best part of my day.

Scott Benner 9:03
Yeah. I can't, you know, cocaine anymore, so I'm gonna do this, like, that thing, yeah, yes, yeah. Also, your generation is like, were you broke growing up? Or was your family comfortable? My daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you, omnipod.com/juicebox whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport. Or were to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once omnipod.com/juicebox get a pump that you'll be happy with forever. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, usmed.com/juicebox, or call 888-721-1514, us, med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys, they have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us med carries everything from insulin pumps and diabetes testing supplies To the latest CGMS like the libre three and Dexcom g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better business bureau at US med.com/juice box, or just call them at 888-721-1514, get started right now, and you'll be getting your supplies the same way we do. I think

Cassidy 11:47
it depends on who you ask, because if you ask my fiance, he would say that I grew up somewhat comfortable, but my dad had three jobs at one point growing up, so I mean, I wouldn't call that exactly comfortable,

Scott Benner 11:59
but you weren't worried about money personally as a child growing up, right? No,

Cassidy 12:03
no. So I think that's what the argument was like. We didn't have an argument, but we talked about it a little bit, and he was like, Yeah, but you never were like, oh, where's my next meal going to come from? Or, oh, you know, and that's true. I never, never was aware of our financial situation. And I feel like that's the difference,

Scott Benner 12:21
yeah, my point is, that's how you end up being able to be, like, interested in, like, Frappuccino art. You're not thinking like, I have to quickly get out of here and make a bunch of money or I'm gonna die. Oh, yeah,

Cassidy 12:33
Scott, I was a theater major for about a year and a half. So you tell me if I was aware of finances, literally at all. So

Scott Benner 12:43
we'll change the name of this episode too. Cassidy was comfortably Caucasian. Okay, actually, yeah,

Cassidy 12:50
that's great. Let's do that. That's a good one.

Scott Benner 12:53
And I'm not coming down on you for it. I'm just saying, like, no, it's just Yeah, it's true. I just when you were like, Oh, I find this interesting. I thought, I don't know how she had time to find that interesting, like, because there were things I found interesting, but the energy I used to work in my uncle sheet metal shop was used up on that, so I couldn't, like, get an image, sure, yeah, okay, all right, hippie, I got you. I know what's going on. I know.

Cassidy 13:16
I know my fiance would love you. He'd be like Steve.

Scott Benner 13:22
So at what point do you decide to be a nurse? I was only

Cassidy 13:26
a theater major for a year and a half. It was less about like, financial stability and more about like, it took something that I loved so much and turned it into like, this is what it's going to look like when it's a job. And I was just like, I don't think I want to do this. And I'd always been interested in nursing, like it was kind of like a thought that I'd had, but I was so focused on acting, it was never like a top priority or voice. And so I left the school that I was at and went into pre nursing. So I did, like, all of the prerequisite classes that you have to do. And I just talked to probably three different people who are in nursing, who talked me completely out of nursing. And they were like, nursing is the worst career ever. I'm so miserable, I'm so tired, like, I don't get paid anything. Like, people are awful, blah, blah and like, so at the age of I was 20 or 21 I like, really let that dictate what I decided to do. So I was early enough in the degree that I could switch to a social work degree. So I did that, and then I graduated in 2020 met my fiance. We moved to Seattle for his job, and I was like, looking at entry level social work jobs. I went to an interview. They offered me a job, and I just was like, This is not what I want to do at all. And to do what I want to do, I have to get my masters. But I was looking at jobs like with people who are masters prepared, and they were paying them like, $25 an hour. Oh, my goodness. I. And I was like, Okay, well, obviously, financially, this is not a great decision, because your MSW is like, $100,000 so it's, like, it was just not, I was like, okay, the stream is dead. I don't want to do

Scott Benner 15:11
this. That's where my Oh, my goodness came from. Not that $25 an hour is not a, you know, reasonable amount of money, but it's, I'm talking about, like, after I paid for a master's and an undergrad, yeah, yeah,

Cassidy 15:21
yeah. I feel like social work is an incredibly difficult job for a lot of reasons, but it's just like, I think that they see a lot of red tape, like they're like, I see how to help this person, but there's like, seven obstacles in the way, you know, and so I think that would be frustrating, but so I kind of fell back into researching nursing. I did, like, a ton of research. I talked to a few nurses, and then I was like, I that's what I want to do. I really want to be a nurse. And I found a program. Well, actually, my fiance's dad lives in the Midwest, and he was like, if you guys move out here, you can live in my basement while you go to school. So we did that, and then I was able to, like, save a little money, and then I worked part time, and then just, like, commuted to school.

Scott Benner 16:07
So like, Silence of the Lambs, you lived in someone's basement in the

Cassidy 16:12
Midwest. Was it like it wasn't quite as dungeon? Well, it's a little it isn't as bad as it sounds. It

Scott Benner 16:22
rubs the lotion on nothing like that happened. Nothing, nothing,

Cassidy 16:26
nothing like that happened. Yeah, so and then, yeah, I went through 18 grueling months of nursing school.

Scott Benner 16:36
You hammered away like you got it done fast, huh? Yeah, it

Cassidy 16:39
was. It was definitely like, I think that a lot of people that go through nursing school know that it's not necessarily like the difficulty of the content, but it's more the amount of things that you have to learn in a short amount of time, right? Yeah, and I work at an adult hospital for about a year as a PCA or nurses aide. I thought I was going to work with adults, and then I had my pediatric clinical rotation. There's a floor at the hospital that I work at that's like, the diabetes floor. I like, talked to one of the clinical leaders there, and she was like, Well, I really would like you to work here. So that's where I work now, as a nurse. Oh, awesome. The floor that I'm on is, like, if it is the diabetes floor, but also we're like the organ transplant floor. We get a lot of, like, liver and kidney transplants, and then kids that have had transplants, and then kids that are pre transplant. Like almost every auto immune disease you can think of, we see on our floor too. So okay, yeah, cool. Let's find

Scott Benner 17:37
out about this. So yeah, you were diagnosed when you were 12 with type one? Was that your first autoimmune issue? Or No? No.

Cassidy 17:44
So I was diagnosed with hypothyroidism when I was two days old. So I don't know if it was autoimmune or if it was like congenital hypothyroidism, but I've been told both by different providers, so I don't know if that's truly auto immune. I gotta

Scott Benner 17:59
jump in. Somebody just said this to me in the last couple of days while I was recording, like, How was that possible? No one ever said that to me before. And now, in the span of like, seven or 10 days, two people have said, basically, I was born with hypothyroidism. Yeah, uh huh, yeah. I was two days old. Is your little thyroid underdeveloped? Still today? No, no, I don't think so. There's was. That's why I asked, okay, okay, well, I mean, have you had it scanned? You know, I

Cassidy 18:24
haven't had it scanned, but they've, like, palpated it and said it feels normal. Maybe that's not super reliable, though I

Scott Benner 18:30
love that, the way that we had to make up a word so it doesn't sound like your thyroid is being molested by a clinician. We palpated it is that what you

Cassidy 18:39
did? That's a nursing term.

Scott Benner 18:43
Okay, so you've been taking Synthroid your whole life. No, no. So

Cassidy 18:46
here's the interesting thing, the physician that diagnosed my hypothyroid was like, okay, so it's very important that she takes this medication for like the first couple of years of her life. I think I only took Synthroid for like, two years, and then they re checked my levels and determined that I didn't need it anymore. Do I know if that's like, actually what you're supposed to do? No, it sounds wrong to me, but I don't I digress. I feel like because then they I kept telling my mom, like, before diabetes, I'm so tired, I'm so tired, like I'm cold, and I was like, gaining weight, and they would check my thyroid, and I don't know what my TSH was, but I'm sure it was high. And they were like, Nah, she's fine. I didn't get back on Synthroid until I after my diabetes diagnosis. Then they checked my TSH again, and they were like, Oh yeah, you need to be on Synthroid. And we were like, oh,

Scott Benner 19:41
okay, you're a person who lived through this and has a nursing background. Can you, I'm asking, wrap your head around a person coming into a doctor's office with hypothyroid symptoms, having had the story you had at birth, and then someone saying you it's. Definitely not that

Cassidy 20:01
it's crazy. Yeah, I don't know, because I've thought about that too. Like, because I hear people talk like patients talk about it too, right? Like, you know, oh, we've had these symptoms for a long time, and it kind of and we'll talk about this later too, because the same thing happened to me this past year. But I just think, I don't know. I feel like hypothyroidism is not that rare, so I guess that this theory doesn't really track. But, like, I feel with diseases that are quote, unquote more rare, they're just like, Oh, we're gonna, like, make sure that it's not the more common ones first, and we're gonna make you wait, or we'll see if it goes away, or we'll try. You know what? I mean, Cassidy,

Scott Benner 20:34
I'm trying to get you to tell me if everybody is a dummy. I mean, you work with a lot of people, right? Like, so is it just law of numbers? Like, is it just that if I put 100 people together, a certain number of them are just not going to be good at it. What am I dealing with here? I don't know. I plead the fifth. I don't know. Should we make this anonymous? You want me to blur out your name? Can I ask you again?

Cassidy 20:59
No, I don't want it to be anonymous. Okay, I just think healthcare is really messy, and it's coordinating so many different things all together at once, and it's just like, I've just seen miscomm minutes, like miscommunication happens in my everyday life. As hard as you try, it's just like, it's just there's too much going on, you know, like patient care is so multi faceted and complex and nuanced. And it's just like, I think you just have to know as a patient that you have to advocate for yourself. Because I don't think that it's that providers, nurses like, don't care or don't want to take the time, at least in my experience, like, I haven't really ever felt that personally, but I think it's just like, truly, if you feel genuinely something is wrong, you just have to be very honest with your doctor and be like, listen, like, I understand that you want to take the conservative approach to whatever you're addressing, but like, something is really wrong.

Scott Benner 21:53
You know, you're asking people then to understand the foibles of the system, and they don't. I know, yeah, and they don't. I'm going to say this here, because I'd like this to be recorded somewhere. Today is December 18, 2024 I'm saying this to all healthcare providers. You all got to pull your together, or you're going to get replaced by a chat bot in the next five years.

Cassidy 22:13
Oh, oh yeah, it's already, it's already happening, yeah. Like, I feel like we're already, we already have, I guess it's not like a chat bot, but it's like, it's gonna be, it's gonna be, no, I and it's like, I just had this conversation with my dad the other day. I was like, Well, I think we'll be replaced by AI. He was like, nurses, no. And I was like, definitely. I was like, Yeah, eventually, for sure, like, if not completely, then partially, you know.

Scott Benner 22:38
But if I sat just at a prompt right now and said, 11 year old girl complains of tiredness, always cold. Whatever you just said was put on Synthroid at two days old and then taken off of it. What do you think's wrong? The chat bot would come back and say that the kid has hypothyroidism.

Cassidy 22:59
Yeah, I think it's more like, also, I think providers just can't always, like, agree on certain parameters for tests.

Scott Benner 23:07
Oh, I know. I guarantee your TSH came back at like, four, and they were like, No, this is fine, right?

Cassidy 23:13
That's what I mean. I think it's just like, I don't know. I think it's interesting, and it's also devastating, because you're right, like, they don't understand the system. They might not understand what's going on with them. So if a doctor says, like, you're fine, then they go, okay, you know, and and they they move on.

Scott Benner 23:29
Translate that over to diabetes, right? Someone's diagnosed with type one diabetes, they get poor direction. They don't understand how insulin works, you know? They come back to a doctor six months later with an A, 1c, and the eights. And the doctor says, Hey, how's this? Why is this like this? And the person goes, I don't know. And the doctor writes down, non compliant, like, how come the doctor doesn't write down, doesn't seem to understand how insulin works. Didn't understand the, you know, the my question, right? And the reason is, the doctor didn't understand the question either, or if they did, they would have explained insulin to the person. The person will understand it. And their A, 1c, understand it and their a 1c, wouldn't be nine. I'm telling you that the problem is people, yeah, I'm sorry, because you seem like, I bet you're a good nurse.

Cassidy 24:11
Oh, thank you. Yeah, I try. I think I I do understand too. Like, as a person with multiple autoimmune diseases, like I'll sit and talk with patients for if I have time to, you know, just like about my own experience navigating healthcare, and like how it can be really challenging and frustrating, and if you have something that the vast, you know, like, I think that most providers are educated very thoroughly on things that are super, super common that we see, you know, every day in The hospital, right? But like, things that you don't see every single day, it's just like, it's, I don't know, and I don't really even know what the answer is. Or, like, how we fix these issues with people that have diseases that have a little more nuance to them, because it's like, it's hard to understand, like, the intricacies of all of the diseases, yeah. But. We can't just be like, well, we don't understand, so we're just gonna do what we can and then send them

Scott Benner 25:05
home. My expectation is, is that your healthcare system, one day will give you like, I don't know how it'll work, but you'll log into an account where you will log your complaints, like, everything, like, you'll like, you'll keep a diary of your health. Then the system will be able to point out what might be important to look into. That's my expectation about how it should happen. So, yeah, I don't know

Cassidy 25:29
what. And then people can bring it up, I guess.

Scott Benner 25:31
And nurses and doctors will be more like the guardian of that information. They'll look at the information and say, that seems correct to me, will move forward. That's the only thing that makes sense to me. I've been doing this podcast for a long time, and I mean, it's fun sometimes to, you know, or interesting, or whatever word you want to use, to have this conversation and be like, horrified that they took you off Synthroid, then you got like, you know, hypothyroid symptoms, and nobody did anything, and you're like, some little girl dragging her ass through life, yeah, yeah. But at the same time, like you don't have to have this conversation over and over again to realize that this is just how it is, right? And it's not because someone's not trying, it's not because the health care system, it's just because when you involve this many people into this situation, this is the outcome you get. That's all, yep,

Cassidy 26:18
right? And it's just, that's what I mean. It's just like, when it's so multifaceted, and there's so many different people involved, it just, it just gets messy, and it's hard to like, that's why I don't have a good like answer. I'm like, I don't know how to I like, see the problems. I literally see them, like, at my job, right? I'm like, Oh, yep, this is how this happened, you know? And it's like, but do I have, I don't have a clue of how we're supposed to fix it, and I think that's how other people feel too. They're like, yeah, we see the problems. I think the only thing it's like, it's good for me to see it, though, as a nurse, because then I can do what I can to try and advocate for my patients better, because I know what has happened, even in the past, or what has happened to other people. Being aware of it makes you a better provider, and I've seen doctors do that too, like, where they're like, oh yeah, this is what happens all the time. So I want to make sure that this doesn't happen to the people that I'm carrying. There's no

Scott Benner 27:08
actual fix what you know like when you're 10 years from now, when you find yourself Cassidy at a PTA meeting, okay, and then whatever horrible thing is happening to you, and you're in one of those situations, and you recognize that this PTA meeting is going to go just like the last one, as we'll go the next one, because Margaret over there is cheating on her husband with the soccer coach, and that lady's been drunk since noon, and that guy is full of anger and anxiety, and this person is On a power trip and blah and like, you realize that every time you go into that situation, it's not going to be the same people, but you're going to have a lot of different variables like that in the room. They're always going to exist. And you can step back as a reasonable person and say, Well, I know how to fix this situation, but the next step is to make her not a drunk, make her not a cheater, make him not a lunatic like and you can't actually do that. So the PTA meeting always goes the way the PTA meeting goes, and there's always a mom in town having sex with somebody who works at the school. You're never going to get away from 10 out of 10. Yeah, yeah. Always gonna be happening.

Cassidy 28:21
I will say too. I think this is why, like, your podcast is so important and meaningful, because there's something and the Facebook group too. There's something really cool about having another person, multiple other perspectives outside of healthcare, for people that have a lived experience and really understand diabetes. And I mean, I just think it's really awesome. So I feel like, I definitely like mention it to patients. I don't know if I'm supposed to do that, but I'm like, This is not medical advice. But like, if you if you want community, if you want something, you know that's like, real other parents who are walking through this, like, this is great, and I would recommend, like, looking into it, well, I appreciate that.

Scott Benner 29:02
I'm glad that it strikes you that way, and I appreciate you sharing it, and my opinion is that you're supposed to be sharing it. So yeah, I'm sure the hospital was like, Wait, what's happening? She's telling people about a podcast. No, no.

Cassidy 29:14
I think honestly, I asked one of our diabetes educators about it, and she was like, Oh yeah, I tell them that all the time. They said, Oh, okay, well, then

Scott Benner 29:23
awesome. I'm gonna continue to do that. Yeah. How did you get pulled onto that floor? Do you think that you were just bright, clear minded, doing a good job? And she thought, I need more people like that up here. Honestly,

Cassidy 29:34
my clinical instructor really liked me, and then she introduced me to this clinical instructor that worked on the floor that I work on now. And I was like, Yeah, I'm definitely interested in working with kids with diabetes. I think that'd be really cool. And that was really it, I mean. And then, so then I switched, I don't think I said this, but I quit my job working with adults at the adult hospital, and then I started working as a PCA at the hospital I'm at now. So, yeah. I don't even know if it was so much like, what I did or said or I don't know, I just probably was like, I'm really excited to be a nurse, and I have diabetes, and I'd love to work with other people with diabetes. And she was like, perfect.

Scott Benner 30:10
This one doesn't even know yet, we'll just get her up here and we'll just drain the life out of her up here. Perfect. Yes. What's the the lifespan of a nurse? How long do they usually last?

Cassidy 30:21
Oh gosh, what a question. They say that we're at a nursing shortage. I don't know if you've heard this or read this anywhere, but we're not in a nursing shortage. We're in a shortage of people who are tired. They're very tired of working at the hospital and working bedside nursing. So I think that in the past, like lifespan of a nurse, bedside nurse, working in the hospital. I don't know 2025,

Scott Benner 30:44
years, really, but now, yes, I don't

Cassidy 30:47
even know. I feel like it's, it's hard to find people that work on the same floor at a hospital for more than, like, five years. What

Scott Benner 30:54
do you think happens? Do you think the job is harder? Do you think that people just have a more kind of, like, Go get 'em attitude, like, I'm just not gonna sit here forever. I wanna move up. What do you think's gonna happen to you?

Cassidy 31:07
I think it's a combination of things. I think some people go into nursing and don't know what the job is, or they have higher expectations for what their their work life is gonna look like. And a lot of people graduate nursing school at like, 22 or 23 it's an immense amount of responsibility at, I think, at that age. So like, the people that I work with that are like, fresh out of nursing school, and they're just like, killing it. I'm just like, Man, I could never have done this. I was like, I was making lattes. I don't know about you, but, and I think it's that people don't know. I think it's that people have higher expectations for the job. It's a hard job, it's long hours. You're exhausted. And it doesn't sound like, I don't know, when I started working 12 hour shifts, I was like, oh, like, that's fine. Like, I've worked an eight hour shift, like, you know, what's four more hours? But it's like the amount of stuff that happens in four hours in the hospital is actually bonkers. Like, I tried to write down my busiest day, like, I had a really crazy day a couple weeks ago. It was like, I'd get a call, and then I would have to go and and then I went into a room. Oh, you're a patient, you know, their potassium is high. Okay, now I have to call the doctor, okay. Oh, now your your blood sugar is 40. Oh, okay. Well, I gotta go take care of that and re check it and do it. And it was like that, literally for probably eight hours of the day, and it was just non stop. And so it's like, if you think about like your busiest day at work, like a standard person's busiest day at work, nursing is like that almost every day you go there. So I think people just get burnt out and they're tired, and they're like, Oh, this is not what I imagined nursing would be. And then also, like, nursing has just changed a lot. Like, I've talked to nurses who are more seasoned and have worked for like, 10 years or whatever, and they retire, and they're like, Yeah, nursing didn't used to be like this. I'm done like, and I don't know, I can't say, like, exactly what the differences are. I think it's just technology is advanced, and so we're, we're getting better at treating people, and so I think we just have more. I don't know it's just, it's, it's a conglomeration of, like so many things, but it definitely is harder and rougher than it used to be like to work in the hospital, than it was, maybe even pre COVID, honestly, really, because people have said too that COVID changed everything. And I don't even know what that means exactly. They're like, Oh, yeah, I was different before COVID. And I'm like, Well, what do you mean? Like, how? And they're like, I don't know. It's just different. And that's the response I get from everyone. And I'm like, How can no one tell me? Like, what's different about it? Like, so I don't know. I also think a lot of nurses left after COVID or during COVID, because they were just so

Scott Benner 33:39
is it possible that, beyond that, the world is different, that nursing isn't different? How would they know? Do you know what I mean, like, how would they know that nursing magically got different, right, right? And but not be able to, like, quantify it. You know what I mean? Like, does it feel different to you? Does like the world feel different to me? Does the world of nursing feel different to you. I guess I can't really, like speak

Cassidy 34:03
to that, because I so I started working in a hospital in 2022, so, like, I was already post COVID, but I just know that, like, people were pushed beyond their limits in COVID, really unsafe working conditions, no. PPE, no. Like, everything changed every day. It was like, I feel like it was, I can only imagine that it was, like, an average day of nursing, but like, 10 times worse, because you were dealing with something that no one understood, and that was changing literally by the hour, sometimes, like protocol and, you know, and then people were getting really sick really fast, and I don't know, I just think, like, I can't imagine what that was like, like, I just really can't so

Scott Benner 34:41
then, is it possible that COVID added a layer to the job that didn't feel like it existed prior? And so now suddenly, a bunch of people who came into imagine if you became a professional football player under today's rules, and then. In six months or a year into your job being a professional football player, they added bats with spikes in it for tackling, right, right? Like, you'd be, like, I don't know, my football just got harder, right? That you could say, Why? Because, like, before, why before they couldn't tackle me with a bat with a spike, and, like, now they can. So I don't want to do this anymore. Do you think that it just leveled up? I think it probably just leveled up. I do also, I've heard this argument before. I've heard people argue that a lot of people got into health care at a time where it was like, like, not war time, for example, like, almost like joining the military during peace, and then all of a sudden someone's like, No, we need you to go across the country and actually shoot at people. And you're like, Oh, I thought I was just gonna be down here giving a hand and out band aids and hugs like that kind

Cassidy 35:47
of thing, right? So I think that there, and this is like, total, like, full respect to people that maybe didn't expect nursing to look the way that it does, because I don't think that we do a very good job. Like, well, somewhat, I think in nursing school, we don't really do the best job of, like, showing what the job really looks like. I think when you go to, like, your clinical rotations, you're there for not a full shift. You have one patient, you like, can't do all the things for them, like, you know, there's certain things they won't let students do and whatever. And it's like some I had my my friend who didn't work in a hospital prior, was like, I think working in the hospital would be boring. And I was like, Huh? And she was like, Well, yeah. Like, look, we're just, like, sitting around. I was like, Yeah, but, like, imagine this. But like, add four more patients, and then add the doctors calling you, pharmacy calling you, PT calling you. Every call light is for the nurse, you know. And she was like, oh, yeah, I guess I hadn't thought about that. But like, I just think that, like, nursing school doesn't always paint the best picture. And so then it's like, you're shell shocked when you get into your job and you're like, Oh, I had no idea this is what it was going to be. So yeah, I think anyone who wants to go into nursing I highly, highly recommend that you work in a hospital first, because it gives you, not only, like, it makes you more comfortable working with patients, because it's a very different role than anything else in your life. Going up to someone and being like, okay, like, I'm gonna, I don't know you very well, but I'm gonna take your vitals and I'm gonna talk to you and I'm gonna, oh, now we're gonna go, I'm gonna draw your blood and, like, I'm gonna be taking care of you for 12 hours. Is like, kind of nerve wracking, especially when they're sick and they have, like, tubes, lines and all that stuff. So and you get a better idea of what the hospital work is like. Like, when I was working as a PCA with adults, I would walk eight miles a day. Couldn't even tell you, like, why? Like, where I where I went, you know, but I was just running around doing

Scott Benner 37:39
this. So what's the real answer here? When I hear people say there's a nursing shortage, do they mean like, every nurse should have six patients in a 10 hour cycle, or something like that, and if you're helping more than a certain amount of patients, then that's how you get stretched too thin. I

Cassidy 37:56
think it's, yeah, I think it's a lot of things. I think it's the nursing shortage comes from people leaving bedside nursing. We have plenty of nurses, like registered nurses, in the country to supply the hospitals, but working conditions and like, every hospital is different. Like, some hospitals, working conditions are so terrible they can't keep nurses there. And that's just like, you know, that's just kind of the way it is. Yeah. Like, there are some hospitals that are completely staffed by travel nurses who are getting paid double the amount that they normally would, but they're having to work in these conditions that are maybe not so safe, or maybe they're just, like, I don't know, at the, like, the patient ratio, like the, you know, maybe they give them seven patients instead of four, which is really what they should be giving people as, like, four patients. Okay, yeah, I wasn't sure

Scott Benner 38:41
what the number I was getting. Number I was guessing, but okay, yeah, that travel nursing thing still is confusing. Like, why don't they just overpay the people who work there? That's

Cassidy 38:50
a wonderful question. Scott, I don't know. My dad and I have had this conversation. He's like, these hospitals are gonna have to start paying the nurses more. And I was like, I mean, yeah, I guess. But like, I feel like, wouldn't we start seeing that now? Like, I travel nursing has been really, I mean, it started being, like, super popular during COVID. Obviously,

Scott Benner 39:08
I know a travel nurse loves her life, yeah, it's in Hawaii right now,

Cassidy 39:13
yeah? Well, and you get the benefit of, like, going on a vacation, if you want, right?

Scott Benner 39:17
Like, it's been to a lot of cool places, yeah, so I don't know.

Cassidy 39:21
I think it's interesting, though, because then the hospital has to pay whatever company they're traveling with. Wouldn't you rather just pay your I don't know what I know. I don't listen.

Scott Benner 39:30
I don't know anything about anything. But if you dug into it and found out that the large conglomeration that owns the hospital also owns the travel nurse company, and that they're just passing money back and forth to each other, I wouldn't be

Cassidy 39:42
okay. Maybe you're onto something. Because maybe that's maybe that's true. I don't know, right?

Scott Benner 39:47
I mean, I don't listen. I want to be clear. I have no idea. I don't either. I just work there. I know people who own construction companies that use a certain kind of construction material. So then. Go and start like a shell company that sells the construction material to this construction company. So they buy the material at one rate, sell it to themselves, basically at an inflated rate, and then make too much money on the material. Then take a loss on the job, on the construction side, write it off on their blah blah. So there's, like, trust me, there's, I'm not smart enough to figure this out, but there are people who are, and I'm going to assume that things are set up that way, so that we're just trying to hold on to our Money Longer. I don't know. Maybe I'm wrong. Maybe it's just a boubard system and like, I have no idea, but I'm just saying, if that was what it was, I wouldn't be crazy. It wouldn't, wouldn't shock me. Yeah, yeah. Let's go backwards a little bit, because we've been talking for a while about this. Do you have any other autoimmune besides type one and Hashimotos, or do you have Hashimotos? Or do you not know that? I

Cassidy 40:53
don't know. It depends on who you ask. I'm asking you. I've had a provider tell me that I have Hashimotos. I've had a provider tell me that I have congenital hypothyroidism. I don't know. I just know that I take centroid

Scott Benner 41:05
the way it's treated. It's not it is going to be the same. So,

Cassidy 41:09
right, yeah, what else do you have in April of this year, I was diagnosed with Crohn's disease. I mentioned earlier. It's been, like, kind of a rough go, because I was, like, graduating nursing school, and then I got this auto immune disease, and then I started my first nursing job, and then I got engaged. Job, and then I got engaged, and then it's just been, like, kind of

Scott Benner 41:25
a whirlwind. But what a shitty surprise. You should have said, what? Yeah, literally. How does that? How does that? How does that get diagnosed? Like, how does it come on to you? Like, I mean, is it a thing you've always had you just realized? Or did it?

Cassidy 41:37
I've, like, done quite a bit of, like, research on people's experience. Like, I read something that was like, Oh yeah, it takes the people, like, on average, five years to get diagnosed. And I was like, Whoa, that's insane. That's so long. I started having symptoms in January. So it wasn't like that long for me, I guess I don't know. It was longer than I would have liked. I was, like, was finishing my last semester of nursing school, so I was incredibly stressed out. And I do have anxiety. And I had stopped taking my anxiety medication like many months prior. And so I thought that, like, the symptoms that I were experiencing or was experiencing were anxiety related. And so I would kind of lead with that. Like, I I went to the doctor in January, and I was like, here's what's happening. Like, but I have anxiety, so, like, maybe that's what it is. And so, of course, they were like, Oh, yeah. Like, that definitely makes sense. I'm sure you have anxiety. Like, let's put you back on your your medication. And so I went back on. I was just taking Zoloft, so I went back on Zoloft. And if you know anything about SSRIs, like, one of the top side effects, they're gi related, like, nausea, diarrhea, abdominal pain, that kind of thing. I was still having these symptoms, but they were getting worse. I went back to the doctor, and again, I, like, led with but I have anxiety too. And, like, I don't know if this is, like, maybe I'm overreacting, you know. So like, three different times. I was told by three different doctors that, like, this was anxiety. I had one doctor ask me if I had a history of ulcerative colitis or Crohn's. And I said, No, but I have diabetes, type one diabetes. And he was like, Okay. And he was like, I really don't think that's what this is. And I was like, Okay. So then I finished, like, finish the, like, didactic portion of nursing school. And I had, like, a little bit of a waiting period before I started my job, and so I was just, like, just experiencing an immense amount of anxiety because I was getting more symptoms, and the symptoms were getting worse. So now I was having weight loss, fevers, night sweats, sores in my mouth. I like thought I had cancer, because the symptoms for inflammatory bowel disease and colon cancer are really like, almost exactly the same. Okay, I went to a, like, a GI doctor, and at this point, I had been to the doctor three times for this. And so, like, and my my family knows that I have, I have, my anxiety is very health related. My fiance was like, Cass, like, I really think that this is your medication. This is anxiety. Like, you're really stressed out. Like, I think, I don't think you need to go to the doctor again. And I was like, I really feel like there's something wrong. So I went to this GI doctor, and he was so nice to me and so kind. And he was like, I really think that this is the medication, but if your symptoms don't get better in three weeks, I want you to come back. I waited for three weeks. The whole time I'm thinking, I'm dying, right? Like, I'm like, I have colon cancer. I'm dying, like, and no one's doing anything about it. I scheduled an appointment with him. I went back to him, and I was like, Could this just be the medication? And he was like, No, this is not the medication. He was like, this is something else. So they did, like, inflammatory test. It's called the calprotectin, and your normal level should be, depends on where you go. But less than 50, and mine was 800 he had me come in, like, emergently. It was like three days later for a scope, he diagnosed me with ulcerative colitis. At first, he. Like, it looks really mild, but it's definitely, you definitely have something going on. And then he was like, I want to start you on prednisone. And I was like, freshly off, like, verse Ed and fentanyl. And I was like, I can't, my blood sugars are going to be so high. I was like, I can't take prednisone. And he was like, Okay, we'll, like, put you on a different steroid. So he put me on budesonide, which is, like another, like, more mild steroid, and it worked. It helped a lot for like, the first two or three weeks, and I had my, like, graduation ceremony during this time. Like, I was, like, relieved, but also I had just been given this diagnosis that, like, I knew basically nothing about. I just felt really angry because I was like, How can I have diabetes? And this, like, I went to an IBD specialist next, and she walked in the room and she was talking to me, and she's like, okay, yeah, like, tell me a little bit about what you've been experiencing. And she was like, Okay, well, I'm looking at your scope results. And this is not ulcerative colitis, this is Crohn's. I was just like, so overwhelmed, because I had kind of come to this, like, I was like, Okay, I have ulcerative colitis, like, I'm accepting it. And then she was like, actually, no, you have Crohn's, which is, like, a similar disease, but also totally different. We have to put you on a biologic medication. And so I'm like, sobbing. I'm like, I don't want to take a biologic medication. I was like, I'm terrified of them. And she was like, I understand. And she's like, trying to talk me down a little bit. Can I

Scott Benner 46:25
ask a question, where do you Where does the medical like anxiety come from? Do you know? No, when did it start? It

Cassidy 46:31
started before I had diabetes got I think it got worse when I was diagnosed with diabetes, because then in my my child brain, I was like, oh, so I can get diagnosed with things, you know. And I even experienced, after my Crohn's diagnosis, I also experienced, like a heightened, you know, what's next, what's next, what's next? I'm gonna have something else. Because, look at me, I have three things wrong with me, and I'm only 27 you know, is your

Scott Benner 46:55
father anxious? Not at all. Your mom, literally, yes, yes, your mom have any other autoimmune stuff, not

Cassidy 47:04
diagnosed. I think she might have, like, the ankle izing ankylosing spondylitis, yeah, because she has back issues. And they initially told her that she might have that, but then she was like, oh, because I brought it up to her, and I was like, do you have that? Because you need to be taking medication for that. And she was like, oh, no, they told me, I don't. But then in the back of my brain, I'm like, You should go see a rheumatologist, because I feel like, maybe you have that.

Scott Benner 47:29
I'm looking at your last name. You're like, European descendants, right? I've

Cassidy 47:34
heard an avian,

Scott Benner 47:37
yeah, right, German, Scandinavian, something like that. Okay, I was just that, like, I was gonna say pure I didn't mean that. Or your mom and dad both from the same it really didn't mean it like that, but your mom and dad from the same damn guy.

Cassidy 47:54
Yes, my my mom is German, so,

Scott Benner 47:57
I mean, I've heard a lot of, like, a lot of auto immune coming out of that part of the world, like with those kind of with those descendants, like, that's not uncommon for my experience. Oh okay. And anxiety, I genuinely think, is probably auto immune as well. So, oh yeah,

Cassidy 48:15
yeah, I could see that, right? I think seeing if your parent has anxiety that's not managed, and you see how they respond to things, you are going to learn that that's the way that you respond to things, especially

Scott Benner 48:26
if you're wired that way already, too, you know, right? And

Cassidy 48:30
like my I remember telling my dad, and my sister is a clinical psychologist, so I've talked to her about this too. I told my dad like, you know, I see these parents in the hospital and their kids are going through, like, really rough, you know, terrifying, like, scary things, and they're so calm. And I was like, I just thought that they would be freaking out, like, and he was like, Yeah, but, like, that's because that's what your mom does. And I was like, oh, right, okay, so that wasn't normal. Like, you're

Scott Benner 48:59
freaking out the way your mom freaked out when you got diabetes or whatever else, right? Yeah. And the reason your mom let your doctor push you off that thyroid medication so easy is because I think she prefers out of sight, out of mind or No, it's okay. They told me. It's not that, my God, it's like, you've met her. Yeah, I know it's good. Yeah, don't worry.

Cassidy 49:16
She's very, yeah, she's very, Everything's fine. Everything's fine, everything's fine. I just need to live 40

Scott Benner 49:21
more years and we'll die any and we'll die anyway. Don't worry about it. Uh huh, yep. So you're following in footsteps, or followed in footsteps already. And so do you really think you have Crohn's, or do you think you're wound up tighter than a top? Oh, I have Crohn's. Okay? All right. Well, that's good. I mean, at least it's real, like, you know what I mean? Like, you're not just, like, having, like, a, like, a psychological implication, psychosomatic, yeah, on your stomach.

Cassidy 49:46
Yeah, they so the way that they diagnose Crohn's, I don't know if you know much about it, so I don't mean to, like, speak to you like you don't know anything, but I don't know you explain it to me. Basically, they do a colonoscopy. Well, first they do like, an inflammatory marker test, which they did. And it was positive. So they knew that one of two things was going on, either I had colon cancer or I had inflammatory bowel disease. And so then they do a colonoscopy, and based on like, the like, obviously, they put a camera in, and they can see, like, the inside of your colon, and when you have Crohn's or you see there's like, visible redness and sores in your colon, and then they can take so then they take biopsies, like all over to see under the microscope which one you have. And some people have indeterminate colitis, they don't know which one it is. For me, I'm actually very thankful I know, because it's just like, nice to have more information. But mine, there was, like, there's a certain, I think it's like granulomas or something. There's like, a very specific cell that is only present if you have Crohn's. And I had that, so they knew immediately. But the IBD specialist that I went to, we didn't even have the biopsy results yet. She just was like, she told me, she's like, I've been doing this for 20 years, like, this is Crohn's, and she knew, and she was right. If you have like anxiety induced, like GI distress, or IBS, or whatever, you won't have any inflammation present. IBS doesn't cause elevated inflammation. And then also your colon will look normal, like endoscopically. So,

Scott Benner 51:14
so what do you do for it? Because they wanted to give you the biologic, and you didn't want that.

Cassidy 51:18
I was terrified to take biologic. I think the reason I was terrified to take the biologic is because, you know those commercials where Side effects may include cancer, blah, blah, blah, blah, blah, and it's like all these terrible things, more often than not, that's a biologic drug. Basically, it's like acts on different inflammatory markers in your body. So like, the one that I'm on, I can't remember which one it is. It's very like, it doesn't really matter. Basically, my immune system is overactive and it's attacking my GI tract, so the biologic just brings your immune system back down to where it should be. Okay, some people have to have, like, more aggressive therapy, where they go on multiple drugs, or they go on, like, a biologic that's more immunosuppressive. That's what I'm on now. How long have you been on it? How long have I been on it, since the end of May? Is

Scott Benner 52:07
it helping? Yes, yeah. Is it helping with anything else?

Cassidy 52:12
Do you mean, like other physical I'm saying if you're if

Scott Benner 52:15
your immune system is overactive, are you noticing other things that are not impacted by overactive immune systems, I feel

Cassidy 52:22
a lot less tired. Okay, before I was diagnosed, I, like, could barely walk up the stairs. Having active inflammation in your body like that is just exhausting. Yeah, again, all the symptoms. I was like, I'm dying. Like, I was like, this is the end. I guess, aside from, like, having like, a high blood sugar, diabetes doesn't really give me like, I don't have a lot of fatigue. That's my experience. I don't know if other people feel like they're, you know, they feel more tired than the average person. And maybe we do, and we just don't know like, because we just live with it, rheumatoid arthritis, lupus, any of those other autoimmune diseases that cause like, widespread inflammation, that's one of the biggest symptoms. Is fatigue, yeah?

Scott Benner 53:03
But I mean, so you're seeing a lessening of that, a significant lessening, oh, yeah,

Cassidy 53:08
okay, that, and then just other than a near absence of symptoms at all, like, not really anything else. So

Scott Benner 53:16
you're like, the poopy stuff is better? Yes. I don't want to be too technical, but no,

Cassidy 53:24
no, yeah, too technical, Crohn's and Ulcerative Colitis. Like, I think people think, and this is, like, understandable, that people think that it's just like, Oh, you just, like, have, like, you just have diarrhea all the time, and that's all it is. It's pain, it's the fatigue, it's fevers, it's like, it's a widespread disease, and it, like, affects so many different things. That affects your appetite, it affects how you absorb nutrients. Or it can, you know, like we, we have kids that come in and their hemoglobin is super low, or their iron is super low, their B, their vitamin B 12, is low, their vitamin D is super low, like, lower than the average person. I mean, I know everyone,

Scott Benner 54:00
you're not absorbing those things that you should be. You just

Cassidy 54:03
don't absorb it. And it just depends too. Like, if you have Crohn's, it can be in your colon, it can be in your small intestine, it can be in your stomach, it can be like, all over. And it just depends on, like, where your body has attacked you. That can kind of change the symptoms too. I've read some stories of people who have Crohn's, and they were, like, I had symptoms for like, three years, like, every doctor told me that, oh, you're just anxious, or, Oh, you have IBS, or whatever, if their disease is in their small intestine, you can't see that on a colonoscopy, and you can't see that on an endoscopy. You literally have to get like, a pill cam study done, because even if you get like a CT scan, sometimes it doesn't show on the CT scan for I'm sure, like, for those people, it's incredibly frustrating, because they're like, I know something's wrong. It just takes them so long to get like, approval to to really look done.

Scott Benner 54:52
Yeah, I'm dying to know, is your anxiety any better? Yes, yeah.

Cassidy 54:56
I also went, I'm on a different SSR. I'm on, like. Pronoun, yeah,

Scott Benner 55:00
I know. But I was wondering about on the biologic, did it touch it? Oh, on

Cassidy 55:04
the biologic. I think that's really hard. Because, like, obviously, when my symptoms got better and I was feeling better, and I knew what was going on, my anxiety was a lot better, because I

Scott Benner 55:13
was like, okay, yeah, see, there's no way for you to measure that, I guess, yeah, there's

Cassidy 55:16
not really a way. I'd be curious, though. I wonder if there are any studies done on that, like, you know, people who are on whatever medication, like, if their mental health is better, the only studies that I've ever seen about that is just like, people with Crohn's are more likely to have anxiety and depression. But they say that about diabetes too. And I feel like any chronic illness, they're like, you're more likely. That

Scott Benner 55:38
makes sense, but I think that's probably just the thing they say too. Like, you know, you have a chronic illness, you're more likely to both. But I'm, I'm trying to say, like, if you have inflammation, and inflammation is impacting you in different ways, yeah, and one of those ways is anxiety, then depression comes along with anxiety, etc, and so on. Like, you know, like, yeah, that all makes sense to me. So, yeah,

Cassidy 55:58
no, absolutely. One of the worst parts about getting this diagnosis was I was like, frantically looking for other people that had diabetes and Crohn's, and I just, like, couldn't find

Scott Benner 56:11
anyone. What anybody was willing to speak up maybe, or that knew,

Cassidy 56:15
I mean, or that knew, yeah, but it's just like, there's one person that I found that I follow on Tik Tok, and I, like, message them immediately when I, like, found out, and we had like, a long back and forth, which was really nice. Yeah. I just don't think those two things, like, coincide very often. Or, like you said, maybe they just aren't diagnosed or what, but I know that type ones, especially on the like Facebook page, like, people have a lot of like, GI issues or, like, it's common,

Scott Benner 56:40
yeah, there's that overlap too, with, like, a lot of people just experience poor digestion after type one as well, which is, yeah, maybe not the same thing, not maybe not the same but wouldn't be the same thing as what we're talking about. But there's overlaps there too. Yeah, it's very frustrating to me, because life is already what life is. And then, like, some people get anxious, like, What the hell, ridiculous. They weed. Didn't help. You tried? I imagine

Cassidy 57:04
I can't smoke weed. I'm a nurse. I'm

Scott Benner 57:08
sorry. I didn't understand. Did you try it? No, okay, no. Nurses can't smoke weed. No. You get drug tested. Really? Where do you what state are you in? Ohio, okay. I mean, in some states, how do they handle that? Like, I always wonder about cops too. Like, if you make weed legal, then can a cop smoke weed?

Cassidy 57:28
No, because even if I were to get a job in Seattle or Colorado, I don't think that healthcare professionals can. I think that they are, because it's on the national level, it's still illegal if they make it legal nationally, then it would be like, you know, because obviously, like, they can't, they don't test you to see if you drink alcohol every day, you know?

Scott Benner 57:49
Yeah, no, I'm assuming you tried that. That didn't work. Yeah,

Cassidy 57:52
yeah, I did try that. That made things worse, actually, yeah, I

Scott Benner 57:56
was gonna say that. That doesn't help, but in 1976 that's definitely what you would have tried, you're like, I feel nervous, is how you would have put it by was just having this conversation with somebody last night, awesome that like, if you go back a number of years, no one's ever like, if you go back 20. I don't know how long it is, but in my lifetime, I never heard a person describe themselves as anxious in my life.

Cassidy 58:17
Yeah, I was diagnosed with anxiety when I was eight, I had certainly never heard the word really used, like, oh, I have anxiety. And I was like, I'm the only one in the whole world that has anxiety, because, you know, and then now, of course, like, everyone is like, I have anxiety. Let me ask you

Scott Benner 58:34
a question, because this conversation I found interesting, and I'm going to end here with this on you, because I want to hear, like, your thoughts about this? Yeah, I'm not saying that people weren't anxious 20 years ago. What I'm saying is, like, you didn't hear anybody, like, running around going, like, I'm anxious, but what you heard was Bill throws things when he gets pissed. Or, like, you know what I mean, like, that one's always crying. Or, like, you know what I mean, like, that kind of stuff. Like, they didn't have like, a word for it. Like, so yeah, and people just pushed through. Now, I'm assuming a lot of them push through with alcohol and drugs, you know, in other ways that they tried to cope. But do you think this is my question that came out of this conversation last night. Do you think it's valuable to be told you have anxiety, or do you think that it's leading when you tell people what's wrong with them all the time? Like, do you know what I mean? Like, instead of just saying like, you know, in high pressure situations, I wouldn't go to Cassidy instead of like that. And then you just being a person who we don't like turn to in high pressure situations, and you don't think of yourself as good in high pressure situations. I'm making up things. But like, instead of like, you walking around going, I have a thing. There's something wrong with me. Is it better? My question is to just think I'm not good in high pressure situations, or is it better to think I'm an anxious person? I have anxiety. Sure, that's my question.

Cassidy 59:49
I think it depends on the person, because I've had some therapists say, like, do you like, identify as a person who has anxiety. I know you have anxiety, but do you not want me to like, say. Like, because of your anxiety, because you because I think for some people, it's kind of empowering in a way. And they're like, okay with it being like, you know, a descriptor of, like, part of who they are. And then some people feel like, oh, it, it makes me more anxious. It the label kind of reinforces the idea that there is something like, going on in my brain that I, like, can't control. I just wonder if we over diagnose anxiety and depression, because anxiety is a normal human emotion. Everyone experiences anxiety. You know, when someone says, Oh, gee, like, I have, I have bad anxiety before I take a test, it's like, okay, well, that's normal, right, right? You just have to manage it. It doesn't mean that you have anxiety disorder, because anxiety disorder is where you are in fight or flight all day, you know. Or you're having panic attacks at random times, and you don't know why. Or, yeah,

Scott Benner 1:00:48
I'm thinking if we stormed the beaches of Normandy in 2024 somebody would have told me that all those guys on the boat had anxiety, but I'm going to assume that what they had was a knowledge that the boat was going to open in there was going to be a lot of shooting. I think it's weird that everybody Yeah, but a lot of people are running around telling you about their diagnosis, about things all the time, almost like, it's like, see, I'm special. I got a thing. I don't know if that's right or not, like, it just feels weird to me. It feels weird to me to meet a person who is 1,000,000% to my eye, completely normal, and to have them tell me I'm autistic, yeah, where I'm in the middle of the most boring thing in the world, and somebody says I can't focus on this if my ADHD won't let me. And I'm like, ADHD, this is just boring. Do you know how many people come on this podcast and tell me before we start recording? Listen, I gotta tell you, ahead of time, I'm gonna be all over the place. I've got ADD, I've got 80 I don't know what they say, and I can't keep a straight thought. I'm gonna be all over the place. I talk to them, there's not one sign of that. And I'm like, Why does everyone think there's something I'm using the word want to be something wrong with them. But like, why are they looking for what's wrong with them? Like, when there's so many things that are right with them? Like, just, you know what I'm saying. I don't know. I agree.

Cassidy 1:02:04
Yeah, you know, as a person who, like, I have anxiety disorder, for sure because, and the reason I know that is because, like, even before I had any symptoms of Crohn's or whatever, I would just be like, Huh, I'm having a panic attack for no reason. I feel really unsafe right now. Why? I don't know it when it's disrupting your life, that's when it's like, I feel like that's when the diagnosis comes at least, that's for me. If anxiety

Scott Benner 1:02:28
is inflammation related, for example, or something like that, then sure, yes, that's happening to you, and I don't want to ignore that. That's happening to you. I'm not, I'm certainly not saying that. And are there more autoimmune issues in the world? Is it possible that there are just more people with anxiety and ADHD, which probably is also inflammation related, or something like, You know what I mean? Like, is that possible? Yes. But in the real world, if it's not stopping you from living your life, I just find it strange that everybody's running around all the time telling me what's wrong with them. Like, I don't know. Like, am I just old?

Cassidy 1:03:01
No, I don't. I agree. I think it's, I think it's fascinating, because, like, and I've talked to my sister about this too, and she agrees that, like, we're seeing it more often, but she has also argued that, like, the criteria has changed, and so it's, like, more inclusive, like, in terms of, like, the diagnosis, like, you know, we can, we can diagnose more people with autism because, like, the spectrum has, like, not grown, but like, I don't know, the diagnostic criteria has changed a little bit. Yeah, when you say, like, you can't, someone tells you, like, oh, I have autism. And you like, can't tell. It's just, it's interesting. But then it's like, it makes me wonder, like, what made them seek out testing? Like, I wonder if it was like, Oh, I feel like I

Scott Benner 1:03:42
Is there a problem and they wanted to get tested, or is it just the world telling them that, oh, I fit into a category. Now I should go find out if I'm really in that category. I just feel like, 20 years from now, we're gonna look at the tight end from the from the New York Giants, and go, he's a giant. He's a real giant. We decided that in the category of giantism, like he instead of just going, there's a big guy. Listen, I'm not making judgments. What I'm saying is, I don't know if there's a value in doing this, like segmenting people down to the last little thing that's wrong with them, or if it's a weird like navel gazing thing that's not needed all the time, that's what I can't figure out. That's all. I don't care. By the way, you'd call yourself whatever you want. I'm already right. Like,

Cassidy 1:04:27
at the end of the day, if you have you know. And also, like, I try to, like, I definitely meet patients. And I'm like, that kid has anxiety, and it's not on their problem list. And I'm like, That is a kid that, like, really could benefit from therapy and or medication, like, you know, just because they're panicking. And I'm like, Oh my gosh, it's like, looking in the mirror like you, you poor thing, you know. But then there are kids that, like, have a laundry list of mental health diagnoses, and I go and talk to them, and maybe it's just because their medications working really well or whatever. But I'm like, I don't. Know, it's interesting,

Scott Benner 1:05:01
is that person harmed by walking around always thinking there's something wrong with me, there's something wrong with me when they're dealing perfectly fine, dude. He means, like, Can my back hurt? Do I need to be a person with back pain? And is there a difference in there? Like, is that problematic for some, also for some people? Like, I think if you listen to this podcast, you know, I think therapy is great. Like, I think it's a fantastic idea. But yeah, if you asked me if I thought there are some people who get into therapy and stay in it way too long, and it ends up being more of a deterrent in their life than a value, I would say, Yeah, that happens to people too, even

Cassidy 1:05:36
people who, like, the last therapist that I saw was like, I don't want to see you for five months. He was like, we're gonna talk for two months or two or three months, and then we're gonna be done. Because, and he's been doing this a long time, and he was like, there is so much research that suggests that if you hit the whatever problem you're having really hard for a short period of time, it's way more effective. But also, I think some people just, like, want a therapist to vent to, maybe listen if

Scott Benner 1:06:04
you need a part, you want to pay a guy to complain to. That's fine with me, right? Yeah, you know, like, you see, like, like, sometimes super famous people are very germ phobic, and it makes me feel like they just have too much time to think about something. That's how that that occurs to me. Like the guy that works in the sewer. You don't hear him talking about germs, right? By the way, he lives the same life as everyone else, right? I've heard Jason Bateman talk about I've heard Donald Trump talk about it. I've heard like they're germ folks. And like, is it a situation where if you had to get your ass up in the morning and go to work and dig a hole, you wouldn't have time to worry about this? And can that happen in other things, is my question. Like, can you get so focused on something that you turn yourself into the thing you're concerned you might be? I don't know. Yeah, I think

Cassidy 1:06:48
so. But I also do think, like, there are people who genuinely are like, I can't leave my house because I am so scared of XYZ. Oh,

Scott Benner 1:06:58
sure. Like, are there people who are like, agoraphobic, or, like, other, yeah, 1,000,000% but it can't possibly be all of us, can it?

Cassidy 1:07:05
No, I don't think it's all. I agree with you. I think it's a combination of a lot of things. It's just like, but yeah, I definitely think that. I think some people benefit from the label, and I think some people it hinders them a little bit, because then they're like, Oh, well, you know, I don't know. I don't know. I can't wait for

Scott Benner 1:07:20
people to yell at me online for wondering out loud. But

Cassidy 1:07:24
just for the record, we prove of therapy we believe that, you know, I don't know the diagnosis is real. But also, yeah,

Scott Benner 1:07:32
you're not gonna once hear me tell you, like, no, that's not true. You tell me, that's how you are. I believe you like, you know what I mean? Like, I have no trouble there. I'm saying bigger picture. Like, just bigger picture. You're the only one thinking that, though a lot of people I know I'm not, don't worry. Here's what happens to me. Cassidy, I say something, and everyone yells at me about it, and a year later, everyone agrees about it. Scott's just slightly ahead of the curve. That's all like, by the way, I did it this year with this year's Scott gets screwed for caring about you. Was about GLP medications. Yes, we'll find out what 2025 Scott gets screwed for caring about you ends up being. So what you're saying is, you're the real hipster. Actually, I'm a little ahead of the curve on something, yes, not on everything. Is that? What that means? Yeah, I'm gonna grow a mustache and wax it up into a point right now. I think you should. I don't think I could actually, but, my God, listen, I do want to i I'm not covering my ass, but let me cover my ass for a second. You really have an issue or a problem or a concern or whatever, like I'm not sitting here telling you you don't. I'm sitting here telling you that I have met people who have told me they're autistic, who, 20 years ago, would have just been a really smart person that I met, they, by the way, they have a house and a car and a payment and a family, and they're living completely fine. And from the outside, I cannot see any indication that they are struggling in any way, shape or form. And yet, it seems like when they get into a crowd of people, they are drawn to tell me they have autism. Yeah. Okay. Like, I all right. I mean, you say you do you do? Like, I ain't gonna argue with you. I'm like, but what are we doing right now? Like, I have allergies. Sometimes I don't run around telling people all the time I have allergies. Like, I don't know why. Why did you need to tell me that? Do you know what I'm saying? Yeah, I don't know if I'm making any sense.

Cassidy 1:09:17
No, I Yeah. I hear what you're saying. And I think it'd be interesting to I'm gonna ask my sister about that, because,

Scott Benner 1:09:22
by the way, beat Cassidy's mom a little bit. Like, just get up and be like, don't worry. We got this. We'll make it.

Cassidy 1:09:29
You were good. Everything's good, everything's fine. God love her. She's great, but she's very anxious.

Scott Benner 1:09:33
We blended wrong. We went from your mom, who would like, be like, That's not cancer, I'll be fine, and then drop dead. That's too much, right? All the way over to I have ADHD, so if we have a conversation, I get off track. It's like, no what? Like, you're pre telling me that you're going to get off track. Like, that's and then I wonder

Cassidy 1:09:52
if it comes from, like, a place of, I think for a long time I was very embarrassed about my anxiety, so I, like, didn't I didn't tell people I. Anxiety, and even now, like, I don't really talk about it unless it's, like, relevant for you to know. Like, I was at work one day and I was like, I'm having a panic attack. And I was like, with my friend, and she's like, Oh, are you okay? I was like, No, but I will be and like, just give me, like, 15 minutes, you know? And it's like, I don't personally, like, love to be like,

Scott Benner 1:10:15
Well, yeah, no, Cassidy, if the gunner on my helicopter is having a panic attack, I'd like to know about it exactly. That's awesome, right, right? I don't know. Like, it's a big idea. I'm not doing a great job of I'm just rambling a little bit, but I just know I get

Cassidy 1:10:29
what you're saying, and I think too, like, it's a, it's a question of whether, because I think I don't know, I can't speak for my sister, I guess. But like, I think she probably would say, like, we just have opened up the criteria more, and we're diagnosing people more accurately or more appropriately. That's why there's like more people with it. But I think it's both, I really do. I think it's that and I think it's also just like people. I think people are getting over diagnosed too. I think

Scott Benner 1:10:53
it's always in the middle. What do I know? I don't know. I don't know. I think everything's always in the middle, like because we see Sal too much. Your mom's generation ignored everything, and now the next generation is paying attention to everything. And then there those people's kids are going to be like, my mom's a lunatic, and then they're going to go back the other way, and it's going to like, see and saw and go back and forth, like, I get we

Cassidy 1:11:15
just got to find a happy

Scott Benner 1:11:15
medium. Yeah, I don't know. Yeah, the cat has Crohn's. The cat has Crohn's, is all the cat has

Cassidy 1:11:21
Crohn's. Aw, I really hope not. That would be really terrible. I just want to say this too before I like, forget to say it. The reason I wanted to come on the podcast is because I felt like I was the only person who had type one diabetes and Crohn's. And so if there are other people out there who have both, or their child has both, or whatever, I like, just wanted to be like, Hi, I'm here, and you're not the only person out there. Because it really was like, that was the hardest part. Was being like, oh my gosh, because I see, I work with kids that have Crohn's. I work with kids that have diabetes, I work with kids who have ulcerative colitis. I'm like, but I'm the only one that has both, you know.

Scott Benner 1:11:58
But that's definitely not true. It's not,

Cassidy 1:12:00
but I just think it's isolating. It feels isolating when you're like, it's not that common to have both, and you're like, oh gosh, like, completely alone out here. Oh, I should have mentioned this, because this is connected to diabetes. When I was first having symptoms in January, I had crazy, crazy insulin sensitivity. I would give, like, my carb ratio was like, one to 10, and I would give for 100 carbs, three units of insulin, and I would drop low, wow. And I talked to two different doctors and my endocrinologist about it, and they were just like, oh, no, that's weird. And that was it, which is fair, because it's like, what else are you supposed to say? Like, huh? Well, I had one doctor ask me if I was pregnant, and I said no. And she was like, okay, she's like, hot. That's really weird. I just wonder if, like, your insulin sensitivity changed. I'm like, but this much, it's like, a crazy amount, like, I was, sometimes I was eating and not giving insulin at all, because I was like, I'm just going to drop low. Why would I give insulin? And I don't have confirmation of this, but I genuinely think I wasn't absorbing any carbs, or I wasn't absorbing them as well, because when I would drop low, I also had to drink like, 60 or 70 carbs of juice to get my blood sugar back up. Yeah, and it was, it was terrifying, because I was like, I'm 60, okay, oh, now I'm 50. Oh, why am I still 50? It's been an hour like this was before the symptoms even got really that bad. That was probably the first symptom I had. Actually, I know that people after like, post stomach bug will sometimes have a little bit of that, like increased insulin sensitivity. So that's why I think it just makes sense that, like I was just having inflammation and so

Scott Benner 1:13:41
and now that inflammation is gone and that that impact is gone as well. Yep, that's completely gone. Well, listen, I'm thrilled for you. I'm glad that your anxiety didn't stop you from trying the biologic, because it sounds like it's really helping you. You know, I'm very happy for you. Did they tell you, is there an amount of time that it works for? Like, sometimes you hear people having to switch biologics. Sometimes. Is that a thing? You're on the on the lookout

Cassidy 1:14:03
for nice? Yeah, I so. Was that

Scott Benner 1:14:07
nice? We were like, oh, Scott understands you.

Cassidy 1:14:09
Because you understand there's a lot of people that, I think there's a lot of people that like, are like, Oh yeah, you just taken that, and you're good. Biologics have about a 50% efficacy rate, which is not great. So it depends. Some people, it works for two months and then it's done. Some people, it works for 10 years. I think that that's the hardest part, is that, like with diabetes, there's some predictability, or, I would argue, like there can be a lot of predictability, if you like, have your everything set you know correctly, as it should be, like for your basal and stuff. But with Crohn's, there's and you see, there's not, like, a lot of predictability as to how your body will handle it. Like therapy that you try if you'll respond to, like, one therapy over another, they it's really like a crap shoot. Like they just will, like, start you on a med and see if it works, and then if it doesn't, then they move on to the next one. That was also a stressful thing for me to think about, too, because. It was, like, with diabetes, I was like, okay, insulin will lower my blood sugar, like, 100% it, it will, you know, and this is, like, it might, it might work, I don't know. Yeah, just keep trying things until something hopefully works for you, you know. And that was, I was like, Oh, I don't like that. That's terrifying.

Scott Benner 1:15:16
Well, it's working, though it's awesome that it's working for you, yeah, thank you. I love that. You also don't know the name of it. That was, that was my favorite part of this. You're like, oh, it's

Cassidy 1:15:24
called Stelara. The one I'm on is Solara. They have all of the biologic names are crazy. They sound like furniture from Ikea, like, they really do, if you, like, look up some of them, like, I don't know, there's like, Sky Rizzy and Remicade and humera. There's like, so many now,

Scott Benner 1:15:41
maybe the they just heard you were from a Scandinavian background, and they wanted to make

Cassidy 1:15:45
you comfortable. Yep, they were like, Here you go. Here's here's your IKEA. Med, awesome.

Scott Benner 1:15:50
All right. Well, I really appreciate you doing this with me. Can you hold on one second? Yeah, thank you. This is great.

Us. Med, sponsored this episode of the juice box podcast. Check them out at us. Med.com/juice, box or by calling 888-721-1514, get your free benefits. Check and get started today with us. Med, earlier you heard me talking about blue circle health, the free virtual type one diabetes care, education and support program for adults. And I know it sounds too good to be true, but I swear it's free. Thanks to funding from a big T 1d philanthropy group, blue circle health doesn't bill your insurance or charge you a cent. In other words, it's free. They can help you with things like carb counting, insurance navigation, diabetes technology, insulin adjustments, peer support, Prescription Assistance and much more. So if you're tired of waiting nine months to get in with your endo or your educator, you can get an appointment with their team within one to two weeks. This program is showing what T 1d care can and should look like currently if you live in Florida, Maine Vermont, New Hampshire, Ohio, Delaware, Missouri, Alabama, Mississippi, Iowa or Louisiana, if you live in one of those states, go to blue circle health.org to sign up today. The link is in the show notes, and please help me to spread the word blue circle health had to buy an ad, because people don't believe that it's free, but it is. They're trying to give you free care if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. It's ready to go right now. And like I said, they're adding states so quickly in 2025 that you want to follow them on social media, blue circle health, and you can also keep checking blue circle health.org to see when your free care is available to you. A huge thanks to Omnipod, not just my longest sponsor, but my first one. Omnipod.com/juice box. If you love the podcast and you love tubeless insulin pumps, this link is for you. Omnipod.com/juice box. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com. You.

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Scott Benner 4/9/25 Scott Benner 4/9/25

#1487 Braving the New World

Pam was diagnosed with T1D as an adult. Adventures in travel and retirement.

+ Click for EPISODE TRANSCRIPT

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

Today I'm talking to Pam. She wrote a book about traveling with type one diabetes. She was diagnosed with type one later in life, she's retired now. Awesome conversation. Really enjoyed it. You're gonna love it too. That's why we called the podcast what we did today. It's the title of her book. That's just a hint, in case you want to go look for it. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin. I know this is going to sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine Vermont, New Hampshire, Ohio, Delaware, Missouri, Alabama, Mississippi, Iowa or Louisiana, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle health.org, you know why they had to buy an ad. No one believes it's free. This episode of The Juicebox Podcast is sponsored by the Dexcom g7 the same CGM that my daughter wears. Check it out now at dexcom.com/juice, box. This episode is sponsored by the tandem Moby system, which is powered by tandems newest algorithm control iq plus technology. Tandem mobi has a predictive algorithm that helps prevent highs and lows, and is now available for ages two and up. Learn more and get started today at tandem diabetes.com/juicebox

Pam 2:19
My name is Pam Saylor, I've been a type one diabetic for 12 years, and I was diagnosed when as an adult, when I was 52

Scott Benner 2:29
years old. Wow, you're 64

Pam 2:31
I am almost 64 next month. Yeah,

Scott Benner 2:35
I'm also almost 54 and I know exactly what you mean. You just asked me something before we started to record, and I said, Oh, let me, let me hit record first, and then then you can ask. So ask your question again. I

Pam 2:45
said, if I go down some verbal cul de sac, can you clip it out? You do edits, right? What is your concern? Because sometimes I'll go off on a tangent, and then I reel myself in and go, What was the question? Kind of like I did just now. I want to know if you have editing capabilities. All

Scott Benner 3:03
right, so there's an editor, but reasonably speaking, we don't cut content. Oh, we like cul de sacs. We cut, I don't know if you say something horrifying, we might take that out. I don't know. We probably leave that in. So okay, the editor really does is he kind of takes air out of the conversation a little bit. So if there's like, if there's a super long pause, you won't appear to pause that long. Okay, if you um or click your tongue or something like that, that'll come out. Okay. Other than that, though, we don't really edit things so, but I've been doing this a while. I don't think we're gonna get into that trouble. Yeah.

Pam 3:39
How long have you been doing this since your daughter was tiny, and now she's in college. So

Scott Benner 3:43
I started writing a blog when my daughter had been diagnosed for a year. So that was she was born in 2004 she got diabetes in 2006 I started writing the blog in January, 27 2007 Wow. Then in 2013 I wrote a book about being a stay at home dad. Right while I was out pushing the book, I met Katie Couric. I did her television show. While we were walking off stage, she stopped me to tell me that I was very good at talking to people,

Pam 4:20
and the podcast host was born,

Scott Benner 4:23
well, not for maybe two more years. I think I launched the podcast january 2015, and what happened was, is that blogging just kind of got passe. It was going by the wayside, like people just weren't reading long form blogs anymore, and I was helping people like I was genuinely helping people with diabetes. I knew I was, and they would tell me that I was, and I thought, am I really just gonna, like, let this all go? Is it just gonna disappear? People are gonna stop reading and then all the good that this is done, it's just over. And then, I swear to you, I thought, Okay. Katie Kirk said I was good at talking to people. I started what ended up being pretty much the first diabetes podcast that stuck. So there was, like, some blog talk radio shows before that, but I don't think a podcast. What

Pam 5:12
I found out I volunteer for my Hoa, and I'm the president, so I have to run meetings, and at first that really terrified me a lot. Standing in front of 30 people answering questions, and you never know what the questions are going to be, that was pretty terrifying. But after doing it two or three times, I realized it really was not that difficult, and you could pretty much answer any question or just say, I don't know, and I'll get back to you later. So I think the more you try new things, the easier it gets to do it. I

Scott Benner 5:47
agree. I also think that some people are suited for it and some people aren't. Yeah, that's probably

Pam 5:52
true. My husband is not a talker, so it would it would be harder for him. I'm a talker.

Scott Benner 5:57
I've had people on who aren't naturally chatty, and they do fine, but you have to lead them through it a little bit. I on purpose have people on the podcast that aren't media savvy or don't find themselves doing stuff like this all the time, because I think it leads to more honest conversations. Yeah, interesting, yeah. So the way you have to get on this podcast is such a slog that my assumption is when I turn the microphone on, on your recording time, if you're there, you really want to do this, right? You know that really is kind of how it gets set up. But anyway, Katie Kirk, lovely woman. She's the whole reason I thought to do this. I also loved podcasts back then. I listened religiously to Kevin Smith's podcast called smod cast, and I grew up listening to Howard Stern. So I'm very much like talk radio, and I like listening to people talk to each

Pam 6:51
other. I'm a recent convert to podcasts. We sometimes go on road trips, and if you're in the middle of nowhere, Kansas, sorry, I love Kansas, you have to have something recorded, downloaded, ready to go, or else you lose all signals. So we sometimes listen to hours of podcasts on the road.

Scott Benner 7:08
Yeah, I do the same, not my podcast, but I listen to other people's still. I really do enjoy listening to people interact. I also like once you get to know them, a little bit that feeling you know that ridiculous feeling you have that you know them. I think the

Pam 7:23
most important thing is the voice, because there are some people on a podcast and their voice will just grate, or it puts me to sleep. It's such a smooth, low, deep voice. It pretty soon I'm nodding off

Scott Benner 7:37
a little too old time radio or a little too local news is that what you don't yeah,

Pam 7:44
a good voice will get me hooked almost no matter what the content is.

Scott Benner 7:48
I'm most put off by the that ability to make a high pitched excited comment about the most banal thing, like, you know,

Pam 7:58
yeah, exclamations everywhere in the podcast. We're at the

Scott Benner 8:01
corner of fifth and eighth. Somebody's built a snowman. Oh, my God, Katie, look. Does everyone see? That's why everyone loves Philadelphia. There's snow. Like, just shut up. No one thinks that. You don't think that. Stop trying to make something out of nothing, you know, just talk like a person. But anyway, let's find out a little bit about your diagnosis. So what were your first inklings that something was happening? My

Pam 8:25
first inkling that I had type one diabetes was on a post it note, really, yes, it was my birthday. Coincidentally, I had just turned 52 my husband and I had been on a trip somewhere, and we got back in town, had a stack of mail, and I had a letter of envelope from my doctor, and I had been to see her in December for routine checkup. So I opened this letter from my doctor, and it was the lab results. Right on top was a big yellow post it note, and handwritten on that post it note, it said patient has type one diabetes. Call office for follow up. I wish I had saved that post it note. I didn't save it. I, of course, flipped out. I didn't know what. I had no inkling. I had no to my mind, no symptoms. My daughter was a nurse, so I called her and and went through the test results with her, and she told me later that she knew right away that I had type one diabetes based on the test results, but she didn't want to spin me out further when I couldn't call my doctor for till the next day. So she just was reassuring. So called the doctor, went through more testing, and sure enough, I was type one diabetes.

Scott Benner 9:40
That sucks. Do you use post it notes still, or have you stopped

Pam 9:44
still? Do I have? I have not been traumatized by post it notes. Look

Scott Benner 9:47
at you. Persevering. That's awesome. I mean, initial thoughts. Do you think, Oh, that makes sense. My uncle has it. Or that doesn't make any sense. I don't know anybody with diabetes. Well, my

Pam 9:57
maternal grandmother had diabetes. Eats. And when I was a kid, I saw her give herself shots with needles that to me, looked gigantic. No one ever explained that to me or what she was doing or why. But as an adult, I came to understand that she had type one diabetes, but no one else in my family did. On either side of my family, and I had gone 52 years with no health problems. Basically, I rarely even caught a cold, really. So in hindsight, the weeks leading up to my diagnosis, my vision was really, really, really blurry, but I just thought maybe it was time for new glasses, or I needed eye drops, or I had zero inkling that this was in my future. You

Scott Benner 10:42
know, it's funny, I didn't get sick a lot growing up, either. And with the exception of autoimmun issues, Arden doesn't get sick very often. And, like, you know, it's funny, there must be such a fine line in there between, like, you have a supercharged immune system and you have a way to supercharged immune system. Like, you know what I mean? Like, I hear people say that a lot like, I don't get sick very often, but I have diabetes and I have Hashimotos, and I like that kind of thing. Interesting. I don't know if I'm reading too far into it, but your relation that had it, was it type two or type one? This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pump an algorithm, the tandem Moby system with control iq plus technology features auto Bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox, the this is going to help you to get started with tandem, smallest pump yet that's powered by its best algorithm ever control iq plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead, and it adjusts insulin accordingly. You can wear the tandem Moby in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket head. Now to my link, tandem diabetes.com/juicebox, to check out your benefits and get started today, you can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juicebox the Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes, the Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends. And the app will also provide you with a projected a, 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juice box. When you use my link, you're supporting the podcast, dexcom.com/juice box. Head over there. Now

Pam 13:20
it was type one. It was my maternal my mother's mother. It was type one because she gave herself shots. That's what I'm assuming. No one ever really explained it to me long

Scott Benner 13:30
ago. Yeah, when you look back at extended family now, like your father's side, your mother's side, is there any like celiac or arthritis or thyroid or any other autoimmune stuff?

Pam 13:41
No, I have a hypothyroidism, low thyroid. I've had it for about 30 years. Both my daughters are hypothyroid. As far as I know. No one else in my family has any autoimmune disease at all. No other low thyroid, no no problems in that area at all.

Scott Benner 13:59
Have you ever had the thyroids check to see if they're Hashimotos, which would indicate auto I

Pam 14:03
have not, and I don't really understand the difference. Well, one's

Scott Benner 14:07
autoimmune and one's not. So, oh, okay, yeah. So no,

Pam 14:11
I've never had testing for that. Interesting.

Scott Benner 14:13
Your daughters freak out when you got diabetes. They start doing the math, or they like, I'll be 52 one day. My

Pam 14:19
oldest daughter did freak out, in fact, when I sent her a text or email telling her probably kind of frantically like, Oh, this is so awful. This just happened. She didn't reply to me for weeks, and later, I we were talking about that time, and she said because she was so freaked out that I had type one diabetes, that she was afraid she would get it, and so she just couldn't, couldn't reply to my to my email. That's

Scott Benner 14:47
something, and you guys did eventually talk about it. Yeah, yeah, we eventually talked about it. Can I ask what you thought when you didn't get a reply? Was that common?

Pam 14:55
I think that was about par for the course in our relationship. But it's always been a little bit strained, and so, you know, I didn't know what was going on, but I thought, well, she'll get back to me when she gets back. You

Scott Benner 15:07
don't have to tell me about your whole life unless you want to. No no, no. But that's part i i was not terribly surprised, okay? Because, I mean, I think I would just be very upset, like, if I said, Hey, I've got a really important question about where to go on vacation, and they didn't get back to me. They didn't get back to me like motherfuckers. What is wrong with them? If you had a situation like that, then I understand.

Pam 15:30
I mean, I was in denial for quite a while. I was angry for a while. I was in denial for a while. I ate, well, I ate healthy. I didn't drink soda. I don't have a sweet tooth. I not overweight. I'm all the cliches about diabetes that you can think of thinking this, this can't be me, this can't be true, right? So eventually you get past that, when you realize it really is true, and so you just start to deal with

Scott Benner 15:56
it. And Pam, you don't smoke. I did, but I quit

Pam 15:59
15 years ago. I was gonna

Scott Benner 16:01
say in the 80s or 90s? Yeah, yeah. I mean, everybody smoked, yeah, when you were younger, right? Pretty much. My mother did. My father did, yeah. I mean, everybody smoked when I was a kid, and nowadays. I mean, the truth is, you smell a cigarette outside now you're like, what that's it strikes you as odd. You know, I know you realize how gross it is. I don't know about where you live, but I'm less shocked when I smell weed than when I smell a cigarette at this point. Oh, I know that's

Pam 16:27
really true. Yeah, when I'm in Colorado. So that's really true for me.

Scott Benner 16:33
You float around in Colorado, I imagine. Well, that's an interesting one. You're 64 it's legal, almost. Did you try it?

Pam 16:41
Yes, yes. We do, from time to time, do edibles rather than smoking it, because I don't like to smoke it. It's too harsh. Yeah.

Scott Benner 16:48
Do you use it for recreation or for a purpose? You know, it's

Pam 16:53
just three or four times a year we get out the edibles, put on a movie that we think is going to be good, and just relax. It's more relaxing thing. Nice.

Scott Benner 17:03
Oh, that's awesome. Good for you. Why did you want to come on the podcast? First

Pam 17:07
of all, you don't have a lot of adults on your show, and I wanted to be the adult in the room saying, for anyone like me who is shocked by this diagnosis, you've had your whole you've lived a chunk of your life, and now you think your life is going to have to change. And that was one of the things I was determined. When I got my diagnosis, I wanted to keep keep my life. I wanted to keep skiing. I wanted to keep active. I wanted to keep traveling. I love traveling, and so I don't think there's a whole ton of stuff out there to help type one diabetes or people with any chronic disease. How do you travel for three months? How do you travel for a long period of time? We all know on a short trip, you pack your little suitcase with a pile of supplies and you're good to go. But if you're going to travel for a month or two months or a year, like my husband and I did when we went to Europe, I wanted people to know that's doable. So I wrote a book about how to do it. I learned as we traveled, and I just want to encourage people to keep their life and not let type one diabetes be something that makes you sit on the couch in fear or

Scott Benner 18:12
worry. Well, that's awesome. Had you ever written a book before? Or is that your first? No, that was my first book that says, what's it called?

Pam 18:18
It's called braving the world, adventures in travel and retirement. Oh,

Scott Benner 18:24
it's awesome. What made you think I could write a book? Because I've had, listen, I wrote a book and it's hard. Yeah, I'm gonna just say it's not, it's not a lot of fun. That's the first thing. And it's not like you don't do it for the money. And, you know, I mean, if you're famous, maybe you would write a book for money, or, you know, if you're getting paid off by, you know, because you've been in government, but if you're just a person writing a book, you're not going to make a bunch of money. It's incredibly hard to market them. Yes, the publisher, generally speaking, does not help you with the marketing very much, which is a thing people wouldn't know. Like, I got myself on the Katie Herrick show, and it's time consuming in a way that's hard to put into words, and you really get lost in it. How long did it take you to write it?

Pam 19:04
Oh, it took over a year. And we traveled to Europe for a year from 2017 to 2018 and then we got back, and we all know COVID was in 2020 and I'd already started the book when COVID happened, and really it was great, because I had nowhere to go. There was nothing I could do. So I could work on the book, and I started to pull it together and polish it. I took writing classes, which helped me a lot to polish the book so COVID. If COVID hadn't happened, I might not have had the discipline to sit down in my chair day after day and and put together this story, which I start at the beginning when we land in Rome and we finish up in Venice. So COVID is maybe the reason I wrote the book.

Scott Benner 19:54
Yeah, so you're writing and you realize I have to take a class if I'm going to do this. Well, I. Right?

Pam 20:00
I thought it helped a lot. It helped me figure out the plot and things to leave out, and how to to what things how to build drama, how to build, you know, interests the writing classes. There's a local writing group school here in Colorado, and I went to several classes there as I was writing, and that helped me polish up the book a lot.

Scott Benner 20:23
Did you have an editor? Did you do it all on your own? I did,

Pam 20:26
yes. I had a great editor, and she took out all of the duplicates, and when I went off on a tangent, she would call me down or correct the language. She was wonderful. She was great. I'm gonna

Scott Benner 20:39
ask a question, at the risk of sounding like a thumb, did someone approach you to write Did you write it and then sell it? Did you self publish it? How did you get it into the world?

Pam 20:49
I wrote it and then I self published it and I self promoted it. So I've been on another podcast. I've had reviews from different Oh, indies, it. My book has won a couple of awards, which I can't think of off the top of my head. That's funny. Independent publish, publisher, review awards. So it was well received, and it's for sale on Amazon, so it's out there. I've sold I don't know how many books, but it was a labor of love. It's got a lot of information about traveling. It's awesome.

Scott Benner 21:21
I'm looking at it right now. It's really awesome. I'm on your website. All right. Here's the link where I can buy it. This will get me to Amazon. Will it? Click here? Yes.

Pam 21:30
And there are pictures on my website of our travels, and I talk about the different things about traveling. Little blog posts about how to ski with diabetes. That was a learning curve.

Scott Benner 21:39
Tell me about that, because you were a skier your whole life. Yeah, I was a skier.

Pam 21:44
Well, starting in my 30s, I learned to ski and loved it. You know, when you're doing any sort of exercise and you have type one, you're never sure what to do with your settings, like, should I go into activity mode? Should I lower my insulin? Should I increase it? And it was always, it was always pretty tricky and but I didn't want to quit skiing. I didn't want to sit at home. There was a time period where no one skied, that was during COVID. So when I went back to skiing after that, it was a re learning curve. But it really helps to have the sensor, Dexcom sensor, the insulin pump help a lot.

Scott Benner 22:22
What did you find once you were diagnosed, as far as direction from from medical people? Did you find it to be valuable, or did you find that what they said left you more confused than when you started at the

Pam 22:35
time, we lived in Kansas City, when I was first diagnosed, and my doctor's office, my Endo. Well, first I got rid of my general physician and switched to a new doctor, because I think type one diabetes deserves more than a post it note. But then when I started going to an endocrinologist, they had a team, and they had a diabetes educator who really helped get me going, get me started. Of course, I was doing MDI at the time, she helped a lot, and the only really bad tip she gave me was she told me, If you're when you're ready to eat, don't take a dose. Don't take a shot until the food is in front of you. Oh, and of course, now we know you have to Bolus about 15 minutes or so ahead of time, but at the time, that's what I was doing, is waiting to see the food, try and calculate the carbs, and then I would take my shot, push

Scott Benner 23:27
the plunger, start eating right away, Yep, yeah. And you get high and stay high for a while and not know what was happening. And all that went

Pam 23:34
along. What took me I would say, Well, I've been 12 years, and the first five or six years were very difficult, because I'm organized type a person. So for the first five or six years, I was trying to control diabetes. I was trying to figure it out. I had lists, I had charts, I had graphs. I was trying to figure out why piece of toast on Monday would not affect my blood sugar, and the same piece of toast on Tuesday, and I would go high, and it drove me crazy, so I I'd try and track it, and I would try and keep track of what I ate, when I ate it, and I would take these charts and graphs to my doctor's office, and eventually she just looked at me and said, Do you really think you can control this disease? And I'm like, yes, yes, I do, but she she convinced me that's really not possible. And so for the last five or six years, I still want to figure things out and keep track of things, but I go with the flow a lot more. If I go high, I just try and and deal with the high. If I can look back and figure out why that's good, but if I can't figure out why that's fine too, it doesn't matter. I still have to deal with the high or the low. So I think I've been a lot calmer, a lot happier the last five or six years. I. People on Facebook pages, and they're still in the phase of trying to figure out every little thing, and maybe that's useful for them, but I I find it much more relaxing to let some of that control

Scott Benner 25:11
go. Where does this attitude lead you? For your A, 1c,

Pam 25:16
I'm usually about 6.0 or 6.10 it's awesome.

Scott Benner 25:19
That's really great. You might enjoy the Pro Tip series from the podcast.

Pam 25:23
Oh, I've listened to some of those. Yeah, bump and nudge has been a real really, has helped me out a lot.

Scott Benner 25:28
Oh, awesome. That's great. I like your attitude too. Like, you know, it's funny, because I think people could hear you talking right before I asked your a 1c and they'd be like, Oh, here it comes. This lady's got an eight and a half a 1c you're saying like you were making yourself crazy over the little things I was, yeah, there's no need for that, that's for sure. But I don't agree completely with the doctor that you can't figure out most of it, but I do take your point about the like, you know the Monday toast thing, where you're just like, well, Mun, m o n, what does that mean? But Day, Day is day. The sun's up during the day, this Sun's high in the sky. I'm high because day isn't like, I know. It's like, you know, you start doing that, but it's

Pam 26:05
like trying to read tea leaves. Sometimes you just don't know. And the bottom line is, you still have to take a shot or take a chug of soda or eat a piece of toast to bring it back up so you just have it's better to know how to deal with it. I

Scott Benner 26:23
have to tell you that the reason that I've boiled the idea of diabetes down at its core to timing an amount is because I think it applies to all the situations. You know, if your blood sugar is too high or too low or not, where you want it, you at some point use the wrong amount of insulin, or timed it incorrectly, or maybe a combination of those two things. So now, when you're thinking about it, it can be as easy as well. My blood sugar is high, but I used enough of a Pre Bolus that doesn't make sense, and I didn't get high till 45 minutes after I ate. And, oh, I didn't know that fat could make your blood sugar stay high, like, you know, like, right then, then you learn those things and apply them along the way. And before you know it, I find most people are doing great, but you're also doing awesome.

Pam 27:06
What I do quite often is I'll guesstimate carbs, oh yeah, and take a shot, and then when I go hide later, I'll actually look up the carbs, or I'll look at the box, and I'll go, oh yeah. That wasn't 20 carbs. That was 40 carbs. My

Scott Benner 27:20
daughter's college. I sent her a note yesterday that said, Did you eat a bag of sugar? And she goes, she goes, No. And I responded. I went two bags. She goes, I think I miscalculated. I was like, yeah. I mean, it feels like it to me too, but she got it under control. To your point, I didn't freak out, you know, it wasn't, it was a it was a shitty blood sugar. It went up like over 280 I mean, it really shot up. She just missed the mark completely. And then she gave herself more insulin and got it down without getting low. And you know, the whole process took three hours. But you know, she's not running around beating herself up about it. And I think that's where you're at.

Pam 27:58
I have to remind myself, though, pretty often, not to be reactive, because when I see that arrow going up, it's hard not to jump on your phone and go, insulin, insulin, insulin, yeah. So I have to, like, look at my watch and go, 15 minutes, wait 15 minutes, maybe an hour. I mean, to force myself to wait, because my instinct is that arrow, that up arrow, needs immediate attention. I

Scott Benner 28:24
don't 100% think you're wrong with that. You should listen to the rest of that Pro Tip series, but I know your idea of, like, oh, it just jumped up for a second. Then you go hitting it with a bunch of insulin that was too much. Like, that's obviously not what you want to do either. But if you didn't use enough insulin and it's flying up, you mean, you do need more. And I take your point that's a lot to figure out and and to try to get through. Especially, I think I don't want to say it like this, because I don't think of you as an older person, but like, because it came later in your life, is it a thing? I'm trying to decide if you're like, look, I really just got to make it like, you know, 30 years, you know what I mean. Do you ever think that way about it.

Pam 29:00
I'm encouraged by the fact that there are a lot of type ones out there that have been fighting this disease for decades. To me, I don't think it's going to limit my lifespan, but I am really grateful I did not get this disease as a child. I just feel so sorry for children who have to grow up this way. I'm glad I didn't have to. Yeah, when I see a little two year old, you know, in a photo who has a pod on their back, that's just, that's just sad, yeah, that's

Scott Benner 29:31
tough. It really is. I was just wondering if you were like, I think of myself as in the last third of my life. Like, I think of like, you know what I mean? Like, I think of life like, birth to mid 20s, then mid 20s like to, like, you know, when your kids leave for college, and then, like, you know, the rest, you know, I'm like everybody else I, you know, I overestimate myself and everything else. And I think like, oh, people lived till they're 85 Like, sure. Then I saw my mom in her 70s and her 80s, and I was like, Oh, this is not what I was picturing. I started to say to my wife, my mom passed a year or so ago, and I told my wife, I was like, I am going to treat the next 15 years as if they are my last 15 years. Now I'm not planning on just like shutting off at the end, but like, I'm gonna pack all the things that I thought I was gonna stretch over 30 years into 15, just in case, like, you know, just in case my hip stops working, or I get cancer, or something like that. I'm just gonna be a little more proactive about it. Because, you know, if you're if you're like me, like you. I got married, I had kids, I spend my time trying to make sure they're okay. And you feel like, well, you'll get to a spot where everything will be settled, and then you'll just like, coast. But I mean, doesn't sort of work that way. And you don't realize that till it's a little late.

Pam 30:51
I look at it like, I want to travel more. I want to travel a lot. And probably I figure I have 10 years where I can do that fairly easily, yeah, and then after that, lugging those suitcases around is going to be harder. So I'm like you. I the next 10 years. I want to travel more. I don't want to skip a year. I want to keep going, because I know after that, mid 70s, yeah, it's going to get harder to travel. Now, I know a lot of I have 75 year old friends who are active and busy and but I also have some that are, yeah, sitting on their couch and have breathing problems. You never know what you're going to get when you hit 70 or 75

Scott Benner 31:34
we make the biggest mistake of measuring ourselves against the luckiest people. You know what I mean, like nobody, because we want to be them. Yeah, right. Nobody says, like, you know, it's always it's funny, I said local news twice in this one. But like, you know that, you know, once a year there's just 100 year old woman on the news celebrating her birthday. She's smoking cigarettes, eating pound cake with another hand. And you're like, That's it right there. Like, I'll just live to 100 and smoke cigarettes. She look at it, but she's the one it happened to. It's almost like being upset with Lebron James, like he just got lucky. You know what I mean? Like, it's you don't you don't get to sit around and aspire to that. It just, it's ridiculous.

Pam 32:10
Yeah, cigarette in one hand, a glass of wine in the other hand. How did she do that

Scott Benner 32:14
on the news and she's cursing, and people are like, it's your birthday. She's like, leave me alone. She didn't even kidding. She and you're like, oh god, she's gonna live for 10 more years. But we look at that and we think, and we think, Oh, that's we all live that long. It doesn't work that way. So that's

Pam 32:26
what we think is going to happen. Now, secretly, I think my husband anticipates I will die before him because I have a chronic disease, and so sometimes he's

Scott Benner 32:36
holding on. He's like, I'm gonna get one year by myself. He by the way, you'd be miserable. But go ahead,

Pam 32:41
I joke about that, and it's like, oh, so are you gonna remarry? And he'll be like, No, yeah, definitely

Scott Benner 32:46
not doing that. We do that here. Everyone thinks I'm dying before my wife all the time, that every time it comes up, I think they're just trying to pick at me, but they're like, you'll die before mom. And I'm like, Oh my God. Like, is this how we're talking about this? Men usually do. I know, but I was a stay at home dad. I'm almost a lady. I should get some breaks somewhere along the line. You know what I mean? You know, I have a neighbor who's a decade or so older than me. They said to me recently, I don't want this to be about politics, but they said they were like, politics aside. I was like, yeah, they go, we're very excited for how well those Tesla cars seem to be driving themselves. Yeah? And I thought, well, that's a weird thing for an older person to be paying attention to. And then she said, because we think that might be our only way where we'll be able to travel one day, is if the cars can drive themselves, really? And I thought, Oh, wow, how about that? And these are very mobile people up doing things all the time, but they're closer Ubers

Pam 33:37
a lot when we travel. Uber is all over Europe. It's everywhere, and trains and busses, of course, but yeah, we when we go overseas, we never rent a car, we never drive. We use public transportation or Uber. Yeah,

Scott Benner 33:53
it struck me, because it's a it's a thought I've had before, like I've said to my wife, I hope they really figure out that self driving thing, because it's possible that we'll get to an age where, like, we'll just think, like, oh, the kids are only, you know, 40 miles from here, or, you know, but, or a day, you know, a couple of hours. But we can't do that. Like, imagine if, yeah, imagine if you could just get in a car and be like, Hey, here's the address. Let's go now. By then, you'll be old. You'll push the wrong button, you'll end up in Poughkeepsie. You know, you're like, what happened? But it's funny, because when she said it to me, my response was, Oh, my God. I've never heard anybody say that before. I've had that exact same thought, like, I hope they figure out this self driving thing, so when I get older, I can get around this

Pam 34:36
should be a poll. Like, how many people have ever thought that in their life? I bet you. I

Scott Benner 34:40
mean, if they're not paying attention. First of all, I've seen it work, like in videos and stuff, astonishing. Well, you know, I would imagine another couple of years, the way AI seems to be able to, like, learn and double itself and everything. Like, maybe you'll actually get there where your cars will just be like, hey, where do you want to go? So it's very possible. Yeah, I'm excited. And also. It really does make you feel like, like, maybe I could extend my just that mobility, a

Pam 35:05
little mobility and activity, and keep going. Yeah, just the

Scott Benner 35:09
thing you don't think about when you're younger. Hey, I wanted to ask you, this is gonna seem like a left turn, but did you get any bad reviews? How did you handle them on your book? Like one where you read it, you were like, oh god. Why did they hate me so much. No,

Pam 35:21
I didn't. I get them all the time,

Scott Benner 35:23
that's what I was wondering.

Pam 35:26
Well, you I have 50 or 60 reviews on Amazon. I think they're all pretty good. There might be a stinker in there, but I don't remember reading them. Maybe I skipped over them. Yeah,

Scott Benner 35:35
you're smart. I read mine when I wrote my book. Yeah, there's someone genuinely hated me. And they didn't just hate me. They hated words for existing so that I had access to them. They were very, very upset. It was tough, because my first, like, eight or nine professional reviews, because my publisher sent it out for professional review, first came back really strong, and then reader reviews started coming back really strong. And then I think I must have caught like, a like, Oh, this is just, obviously I wrote a book, and I'm great at it, and I don't think that. I don't think it's some awesome book or anything like that. But then one of the reviews came back and it, I mean, it was just like, it's not really what it said, but what it felt like it said is, I hate him. I hate words for existing so that he could use them. I hate his family for knowing him, the person really didn't like me, and it took me back.

Pam 36:25
Yeah, there are trolls out there. I had some of my friends BETA readers. I had some of my friends read the book before it went out. Yeah, and my friend's mother said that this was a bad review, but she said, this is a trite book that I don't see the point of, or something like

Scott Benner 36:45
that. That's exactly what I'm thinking about. Want

Pam 36:48
to share that with me, because she thought I'd be hurt, and I just thought, well, you know, you don't have to like it. That's fine. Thank you for your input.

Scott Benner 36:55
Not War and Peace. I didn't say it was I know. I think

Pam 36:59
it has a lot of valuable information. People who travel will want to know, but there you

Scott Benner 37:04
go. What I've learned is, is that a book is content just like, you know, just the digital world. We think about it differently now, but it's nothing's ever for anybody. I mean, there are, I promise you, Pam, there are people listening to you and I right now who hate me, and they're doing something called hate listening, which is the thing I cannot wrap my head around at all. But they just listen to see how right they are to not like me. That's awesome. By the way, their downloads count just the same. It just is what it is. What I've learned is, this is me. This is how I think about this. Here it is, you like it, that's great. If it helps you. That's awesome if you don't like it, I'm sorry. I mean, I'm not really sorry, but like, you know, like a sorry, it couldn't be for you, but I don't know why you're still here. You know,

Pam 37:47
I was in a book club for 20 years, and every month, we'd meet once a month, and every time, half the people loved the book and half the people hated the book, and it was never the same people, and you would shift allegiances. And so I really understand that you're never going to get 100% of the people to like something you've done. I mean, if half of your book club hates Steinbeck and Hemingway, you're not going to get a rave review from everybody.

Scott Benner 38:14
Yeah, I interviewed a 24 year old girl yesterday, and I was stunned. I was like, you like this podcast. I was You must not understand any of my references. She goes, I don't understand most of them. She's young, yeah, yeah, right. She just doesn't Well, here, this will be funny. She mentioned how bad her doctor was, and I said, Any chance that doctor's name was Dr Bombay? See how you're laughing? Pam, because you've seen bewitched. And she was like, what now?

Pam 38:40
No, that's not his name. But when

Scott Benner 38:42
I pressed her, I was like, Why do you like this? And she's just like, I don't know. Just, I just, like, listening to you do this, I'm like, okay, great. So you can't, like, I would never target a 24 year old, recent grad and be like, you know, like, I think you're gonna love me, but she does. So who cares? Why? Yeah, I can't understand why. Like, I mean, if you're out asking people for their opinion, then you know they're going to give it to you, but I'm not asking you for your opinion. If you don't like it, just stop listening. There's so many things in the world I don't like. I've never once sought the personnel to tell them. But an odd thing, I

Pam 39:13
think maybe I've left one bad review in my life, and it was for a book that was really, really bad, and I hated reading it, and probably quit at page 30. Bad reviews take so much effort. Yes, I'm surprised people do it, but I think you write, there are a lot of haters out there. I can't

Scott Benner 39:30
wrap my head around it, like I don't understand listening to something I'm not enjoying. I don't have that kind of time first of all, but like something I'm not enjoying, there's one podcast I have to listen to for a professional reason, you know, I shouldn't say more, because 19 different people are gonna think I'm talking about them, and I'm not. I don't like one of the announcers, but the information so good. I just lived through it. And I've had people say that about me, by the way, which is, like, I hate that guy. I love what they talk about. So I'm like, hey, whatever. Right on. I'm doing my best over here. So let's talk a little bit about the process. Test like you decide to write the book, but are you writing it in hindsight from experiences you've already had, or do you go out have new experiences with the idea that you're writing a book before we

Pam 40:10
left? I kind of had the idea that I could write a book about this or that I might and so I kept a diary journal, and I took photos and I sent to keep in touch with family. I would send a group family email once a month. It kind of summarized what we had been doing. And those were really valuable when I went to write the book, because they were immediate sensations of what was happening that at the time. So when I came back, I had these notes and an idea, and I started writing. And as soon as you start writing, you start cutting. So it was like, add some, cut some, keep shaping it, I guess is the word, and taking classes along the way, which helped enormously, and send it out for people to read it and give comments, send it out to reviewers online to give comments and reviews. So it took at least a year, and like I say, COVID helped because there was not a lot else to do.

Scott Benner 41:14
Yeah, did you ever get feedback that you were just like, I know that's not right. I'm going to ignore it. Yes.

Pam 41:19
I mean, yeah, there were some things where I didn't want to include it in the book, because I thought it it wasn't part of the theme I wanted to develop. I was developing three themes. One was my husband and I had just retired. So what is it like to now be on top of each other? 24/7 traveling in a foreign country where neither one of you knows the language, if you don't have a good marriage, that could kill you right there in trouble. And then I wanted to talk about diabetes, how I could buy insulin in Italy and Croatia and London for around $50 and that's a month supply just walking into a pharmacy with a paper prescription, and it doesn't cost a fortune. I wanted to write about my experience with diabetes. And the other theme was just traveling in general, and how fun it was to travel and the things we got to see. Yeah, so if something was outside of my free themes, I didn't have to mention it. I could downplay it. I could shift it around. So, yeah, you have to shape it. That's

Scott Benner 42:23
awesome. So what was your finding like traveling? How did you manage the supplies needed for months and months of being away? We planned the

Pam 42:32
trip for about a year, and I started stockpiling supplies right away, and I did that by my doctor would write a prescription a little more than I needed each month, and I would go back every 30 days like clockwork and pick up the extra supplies. And I just kept doing that until I had probably a six month stockpile of insulin vials, pens, test strips, everything I needed, pods. So when we left the country for our year, I had my carry on. Suitcase was full of nothing but diabetes supplies, plus I had a beer cooler with ice in it where all my insulin was. So that got me out of the country. That got me going for about six months. When we got to Rome, the first place we went, I found out that I could go to the Vatican pharmacy with a paper prescription, and they would refill that prescription, and they took the prescription, scratched their heads, and came back with a box of pens. They don't have vials there, so I took the pens, I knew I could fill my pump with those, and that added to my stockpile. And our next stop was Croatia, and all I had to do there was take my paper prescription to the pharmacy, and they filled it again with pens. They didn't have vials, so I left with a stockpile. I added to my stockpile every chance I could, even though I hadn't run out of supplies yet. The only thing I couldn't get were my pods, because Omnipod doesn't mail the pods overseas. Okay, so I had them, mail the pods to my daughter in Colorado, she packaged them up, and by then, we're in Croatia, and she packaged them up, mailed them to me in Croatia, and the Croatian customs office would not deliver them to me. And I got a notice in Croatian, which I got help translating. And it basically said something about you cannot get medical devices in Croatia, they would not deliver it. They sent it back to Colorado. So I went back to MDI, because I was out of pods, flat out and MDI. Then we moved to London, and I had my daughter mail the shipment of pods again, this time disguised as books, and they made it through without problem. And so I went back to to the pods after a couple weeks of MDI,

Scott Benner 44:54
let me ask you a sneaky question. Did they know it was medical supplies? Because. She declared them as medical supplies, or did they

Pam 45:02
in Croatia, she called them medical supplies or devices, and somehow that set off alarm bells.

Scott Benner 45:08
Yeah, I would, I would have said, that's a brick in there. Just relax. I'm mailing bricks to people. Calm down. What do they say? It's easier to ask for, you know, the easier

Pam 45:17
to ask for forgiveness than permission, than

Scott Benner 45:19
permission. That's exactly right. Awesome. So Wow. So you just also, I'm going to assume it's the daughter who did respond immediately to your text about the diabetes, not the other

Pam 45:29
one. It's my daughter, yes, my daughter, the nurse who responded right away. You didn't put

Scott Benner 45:33
the other one in charge of sending it the diabetes supplies.

Pam 45:37
I did not so, but the problem with shifting, I didn't know at the time, when you go from MDI to a pod, it's really easy to overdose on insulin, because there's some residual, I guess, insulin in your system. So first day I've got my new pods, I pop one on my arm, oh yeah, we go out about our day, and get home later that night, and you know, I'm on the couch, my husband goes to the bedroom to read. He comes out an hour or so later, and I'm unconscious on the couch. He does a finger stick and I'm at like 20 or something. He gives me a shot of glucagon, which revives me enough that that we can go to a London emergency room. And waited seemed like forever. Got to see a doctor who didn't know what was going on. I didn't know what was going on. They sent us home, and I kept my insulin really low settings, and was afraid to go to sleep, but eventually went to sleep. And when I finally got back home and explained all this to my doctor, she said, Well, what you should have done, you have to set your pod settings for the first 24 to 48 hours of shifting back to a pod, you have to keep your numbers really low your settings. I didn't know that, and so I had this emergency room experience in London, which cost me nothing. I never got a bill for that. Awesome. And the next day, when we went, we went back to the hospital to refill the glucagon. They didn't charge me for that, because healthcare in Europe, for you know, a lot of people is really even tourists. It's not that expensive about that. Yeah.

Scott Benner 47:13
So basically, you were shooting your basal and then with active injected basal insulin, and you threw your pump on it, and it started running your basal profile to see a double basal. Double basal puts you out. What's your basal

Pam 47:26
rate? Well, I don't know what it was at the time. I don't know off the top of my head, what is it now? What is it now my basal rate? It

Scott Benner 47:32
shifts throughout the day. Are you an Omnipod five?

Pam 47:35
Oh, yeah, I'm an Omnipod five. Okay, and the Dexcom g6 Gotcha?

Scott Benner 47:39
Okay, yeah. I mean, that's great. What kind of injected basal were you using? Was it Nova log, I think at the time, not basal. Levere Lantis, oh. Levemere. Levere, how about that? And that's something we couldn't get levime to last to my daughter for 18 hours even. Well,

Pam 47:57
I was breaking it into two two doses. So I would do a morning and an evening dose. So I had done an evening dose next day, got up and put on a pod.

Scott Benner 48:06
So now that this has happened to you and you have hindsight, you look back and you go, Oh, that's so obvious. How did I miss that? Yeah, sucks. Well, at least your husband didn't do what I thought he was going to do, which is come out and see you unconscious and go, haha, I told you I was going to live longer. Yeah, actually helped you. It's

Pam 48:22
nice. He saved me. He

Scott Benner 48:24
didn't go. I told those suckers I wasn't going first. So weird that you talk about that when you get older, but you do, so get ready if you're getting older at some point, you start looking around. You go, you start joking about it, yeah. How's this gonna happen? Are we all going? We're not. I hope we all don't go at the same time. That'd be horrible. I you know, I don't want the kids to die before me, but I don't want to die, you know, you start doing all the it's terrible, yeah?

Pam 48:50
Anyway, although diabetes, I mean, this is kind of grim, so, yeah, but if you had some terminal disease, which our country doesn't really help you deal with very well. I think a large dose of insulin might be a solution to a long, slow, debilitating, grinding disease.

Scott Benner 49:12
That a thing you've thought about. I'm sorry, have you thought about that? Oh, I have, yeah, a lot of people do. They don't talk about it very often, but, but when you pick through with people and get deep enough with them, they will tell you that they've considered that idea if they should ever get into a bad situation, right? Yeah, sucks. I it all sucked. Listen. Pam, the whole thing is terrible. Like, you know what I mean? Like, I'm not, I'm not gonna sugar coat it. Like, my daughter's doing really well, but there's just no doubt in my mind that if she didn't have diabetes, that a burden that would be lifted off of her would be immense.

Pam 49:44
Well, I'm talking about a chronic cancer diagnosis or or no,

Scott Benner 49:48
oh, I know. I'm just saying that that's not a thing. Like the Alzheimer's or the average person walking down the street doesn't think like, Oh, I hope I don't get Alzheimer's one day. But it doesn't matter, because if I do in my refrigerator, you know, like, that's not a thing. Most. People get to think about, I think,

Pam 50:01
once you have a chronic disease, you think about your health more. And you think about, Yeah, how's this going to end? More? Well, you definitely

Scott Benner 50:09
think about your health more, that's for sure. Is it maybe just the first time in your life, it's actually like the conversations come up in your head, like, I wonder how this ends?

Pam 50:18
Oh, yeah, because I, I've never really had anything. I've never had illnesses. I haven't been sick very much, even now I have diabetes and low thyroid, you know, cholesterol, so I don't have a big stack of pills I have to take every day.

Scott Benner 50:36
Yeah. So still doesn't seem that huge, too, or does it? It doesn't. It doesn't. Now also, you're a 1c you're probably healthier than most of the people walking the planet. So I think that's the thing that you can't it's hard to be excited about. But like, once type one says to you, you have to pay attention to your to yourself, and you do it, you come to realize, like, well, I am now in charge of, you know, gaging a thing, making adjustments to something that other people just walk around, I know, unaware. That's not good for them, until it's too late. So I'll watch

Pam 51:08
some TV show where people are digging into these dishes of potatoes and rice, and I'm going, you can just eat that, can't you? You can just eat it and shove it in your mouth. But some of them can't. But what's happen in an hour? Yeah,

Scott Benner 51:21
but, Pam, some of them have type two diabetes or pre diabetes. They don't realize it. It's true. And they just, I mean, listen, you know, it's a thing you don't hear anymore. You remember people used to say, like, oh, after Thanksgiving dinner, everybody gets sleepy. It's the tryptophan and the turkey, I'm gonna guess. Hindsight, it's the high blood sugars everybody had. Like, I don't doubt that tryptophan is, whatever the hell tryptophan is, but you didn't have eight ounces of Turkey and you passed out for a week because of it, right? Probably so many people living with pre diabetes, you know, for type two, and then drive their blood sugar high after a big meal, and they don't realize how sleepy it makes them, etc, and so on. Like, there is value in getting type one in that it focuses you on your health like that,

Pam 52:04
and what you eat and how much you exercise. If, if you're paying attention, you have to pay more attention. I have a friend who's type two, who does not really do anything to take care of his diabetes and and he's type two, if I had the option of dieting and exercise to make the needles go away, I would be all over that. So to me, it's just mind blowing that you have a type of diabetes where you could take a pill and watch your diet and exercise and you choose not to do that could

Scott Benner 52:38
help. Yeah, I don't get it. Well, there are people who have done that, and it doesn't help but like, true, but he but you gotta try, yeah, yeah, right. If you're saying this person is just like, Ah, I guess this is how I go then, yeah. Listen, I don't think it's a willful I probably sound like a hippie now, but I don't think it's a willful thing where people are just like, I just don't feel like taking care of myself. I think there's a psychological thing going on that freezes them, and I don't it's, I'm sure it's different for a lot of people, but you know something about the way you grow up, or something that happened to you or didn't happen to you when you needed it to and now suddenly you have trouble motivating yourself or caring about yourself enough, or maybe your blood sugars are so high that you're cloudy and you Can't even, like, focus on, like, who knows, you know what I mean. Like, it just, it does suck. But for sure, if somebody told me, like, a, you know, going for a walk around the park would make my daughter's diabetes go away, I'd push her out the door. Yeah,

Pam 53:31
now I'm going to be trying to figure out what his motivation is to not take better care of himself. Yeah,

Scott Benner 53:37
it's interesting, and I guarantee it's not conscious. I spend a lot of my time on this podcast asking people why they do things, and I'm telling it no one knows. No one knows about why they do anything they think they do or they you know, it makes me mad or this or that, but that's not like, why does it make you mad?

Pam 53:55
My off the cuff diagnosis, now that you brought this up, I thought about it a bit, is that he's a person who's always been a take charge, person in charge of the family and the finances and whatnot, and he doesn't see himself as a sick person. And if he doesn't act on it, then he can continue to not see himself as a sick person. I've heard

Scott Benner 54:15
that story from people just, I'm going to pretend it's not happening, because I don't want to look like I'm sick. I've heard that one

Pam 54:20
my image of myself, can't I don't want to change my image of myself as a healthy person, so I'm not going to deal with

Scott Benner 54:27
it. I listen taking a massive amount of crap online and other places for like, I started taking a GLP medication, like, over a year and a half ago, and this morning, I got on the scale, and I am, you know, I lost another two pounds. I've lost 56 pounds in a year and a half. My life is completely different now. I am healthier, happier, I feel better, I sleep better, I breathe, I everything. I do everything better than I did a year and a half ago. And yet, I'll still run into people once in a while that would be like, Whoa. So you just cheated, huh? Yeah, cheated. I took the medicine and I stayed alive. Good for you. Well, how is that? Someone's reaction right there? It's fascinating to me. Like, not, hey, congratulations, or you look great, or this is awesome, or I'm glad to hear you feel better, or whatever. Or just don't say anything.

Pam 55:14
They probably want to lose weight too, and they're they've been slogging through diets their whole life, and it does seem like you've taken a shortcut,

Scott Benner 55:21
yeah, but even when it's not about, wait for them that idea of, like, you did something that I don't have the option to do, or, you know, or they make a moral judgment about it. So they're like, like, even, like, you listen, you earlier said, like, I like, I'll take a gummy a couple times a year and chill out. They're gonna be plenty of people be like, you know, you could have gone for a walk or done some deep breathing exercises. You shouldn't be doing weed or like, but, you know, like, it's just doing weed. Look at

Pam 55:45
me. You're these are just more of the haters we talked about earlier, the people who are going to leave a bad review, the people who are going to make sure that you know that they don't like your book there. There are those people out there. And I've been on a GLP ozempic for about a year and a half have you, I've lost 15 pounds, good for you, and but now it's since it's not prescribed or recommended for type ones after the first of the year, my insurance company is going to look at that, and it's likely they won't renew it, because I'm not in the category of person who should get it for weight loss or weight loss. But it also helps with your numbers, of course, but it's not really prescribed for type ones. No.

Scott Benner 56:25
I know we have an awesome group of episodes about glps from this year, but what I was going to tell you is, is that if your weight is still over, where your insurance company will cover it, just switch to week over. Okay, you'll be getting those em pick and we go via the same exact thing.

Pam 56:39
That'll be my tip for the first of the year. We'll see what they do. Yeah, if

Scott Benner 56:43
they say no to it, just tell your doctor. Like, look, just write me. We go before weight loss. Then also, okay, tons of great episodes on the podcast about GLP. I wish I'd

Pam 56:51
lost more weight you. You said 56 pounds, that's amazing. I've only lost 15 and now I'm stuck. Did you have 56 to lose? No, probably another 10 pounds would be, would put me right in the range of where I want to be.

Scott Benner 57:04
What's your um, dose at two units a week, two milligrams, or you right? Yeah. Is that how it's met? I'm forgetting how the OCP pen is measured.

Pam 57:13
Yeah. I think that's a max dose. Yeah. So when

Scott Benner 57:17
you use it for weight loss, the doctor has the autonomy to continue to push your dose up until you're losing weight. I use zephbound, which is from a different company, but I'm on like, 12 and a half milligrams a week. Oh, okay, I'm telling you right now. Like, let's go. Yeah, I'm almost done. I was talking to a friend yesterday who was like, what's left? And I was like, there's these, used to be three handfuls of fat around my midsection. There's two now, like, there's, like, once they're gone, the rest of my body's actually transformed already. Like, it's, it's just right here,

Pam 57:49
I think you're right about how it changes your life. I feel more active. I go to more exercise classes. I mean, carrying around 10, even 10 or 15 pounds of extra weight. It's it's difficult, it's

Scott Benner 58:03
terrible. Like, my joints are better. My ankles, I used to have planar fasciitis. I don't have that anymore. My back doesn't hurt my my back used to hurt all the goddamn time. My back doesn't hurt anymore. I sleep better. Also, like other things that you should, you should, you might like this podcast, by the way, Pam, but there's other things, for instance, like I used to have to get iron infusions all the time because my body I could, I wouldn't absorb iron for my diet. But now that I'm on a GLP, I get all the iron I need for my diet now, and I haven't had to have an infusion in almost two years, I think

Pam 58:36
eventually most people will be on glps, because they have so many awesome side effects, awesome results. And I don't think they found any bad side effects. Yet, there's

Scott Benner 58:46
people like, have issues like, with everything and and one, there's a couple of reasons why they're, you know, scary about giving it to type ones, one for reasons that they don't completely I don't even know if they completely understand or not, but you are at a higher likelihood to have to go into DKA. Part of how it's going to get prescribed to type ones, if they get the prescribing set up, is going to be that you have to have a ketone meter and check your ketones like, that's going to be one of something I don't do very often at all. One of the things they're going to do the other thing is that it can significantly and change your insulin needs. Like, look at you like, you like, you just tried to switch from MDI to a pump, and you almost killed yourself. Yeah, imagine if you, like, Yak yourself up with GLP, and all of a sudden your insulin needs are down by half, and you don't know that, and you're not, you know, being directed well by a physician, or don't have support, or whatever. Like, those are the things I think they're bigger concerns about that's my expectation, right?

Pam 59:42
There needs to be a lot more education and maybe intervention if you're going to do glps and understand how they

Scott Benner 59:48
work. That education extends to the doctors who, generally speaking, aren't going to understand any of this so

Pam 59:54
well. I and I don't think there are as many diabetes educators anymore. It seems harder. To get help. I've heard

Scott Benner 1:00:02
that, by the way, that they're having trouble, that there's not as many endos, diabetes, educators, stuff like that. I think there's not enough

Pam 1:00:10
information off of Facebook from people who are more experienced than I am. And sometimes a little tip, which you have to think of, you can't just take anything you get off of Facebook at face value. You have to think about it and work through it, but there have been some really valuable tips there, where people who have been doing this for decades longer than I have know more about it than I do, and they help me clarify my thinking and what I need to do.

Scott Benner 1:00:35
Yeah, have you found my private Facebook group?

Pam 1:00:37
I have not. You should it's got 50 in the Juicebox Podcast Facebook group. There's a

Scott Benner 1:00:45
Juicebox Podcast type one diabetes. The private group is, I think, at this point, like 56,000 members. It does like 125 new posts every day. There are a lot of people in there.

Pam 1:00:56
You know what I have found that, and a lot of those are younger people. It seems to me just off the thinking back to when I was reading that. And there are a lot of daily posts, you really get buried in that pretty quickly. Pam, may

Scott Benner 1:01:09
I you you've said this twice now, so I'm going to dig into this before I before I let you go. Also, I don't know if you said this while we were recording or not, but it was when we first got together. But you were like, Is this really going to last an hour? I don't imagine I could fill an hour or over an hour now, in case you're wondering, yeah, so twice now, like, once you said, I haven't heard a lot of older people on the podcast and like, so let me tell you something that you probably aren't seeing. So are there more parents of kids than adults with people with diabetes on the podcast? Maybe, but I don't imagine it's more than about 6040, okay. And the Facebook group also might feel that way, but they're there. They just don't talk as much. So it's not as heavy one way as I think you think it is. There are a lot of adults there.

Pam 1:01:58
There are lurking adults on the podcast and Facebook group who are tuned into it, but they don't always speak up or show themselves.

Scott Benner 1:02:08
Yeah, they're not as inclined to be involved. Like, are you like you're 64 like, you didn't grow up with the internet, right? So I did not. Yeah, are you inclined to just jump online and start telling people how you feel? I will

Pam 1:02:20
jump online and ask questions or reply to some people who are asking for information. Yeah, I'll jump online.

Scott Benner 1:02:27
That's awesome. It's not a lot of people. That's not a gear. A lot of people have actually that ability to do they it's more now, obviously, because kids are growing up with it, they have, sure, fewer difficulties with it. But generally speaking, it's not a thing that people easily do. It's interesting. I've seen some really cool studies about how difficult it is for some people to actually just post something online.

Pam 1:02:49
No, I like the internet. There's a lot of information out there. It's, I don't know how we got along without it, but I most people say that nowadays, Yeah, no kidding, we had to actually go to books and encyclopedias to look up facts instead of just Googling damn facts.

Scott Benner 1:03:03
Let me tell you. I'm gonna give you something here, and then I will let you go, because you must have a life. You have to get back to. I do try episode 1212, and 1238, okay, dr, Tom Blevins on GLP medications, Part One, two. I think you'd find those really interesting. Okay, all right, just a really thoughtful guy on glps, and He will answer your questions for sure. Great. Thank you, Pam, thank you. Tell people the name of your book again, please.

Pam 1:03:31
The name of my book is braving the World Adventures in travel and retirement, and I have a website at Pam Saylor, s, a, y, l, O, r.com,

Scott Benner 1:03:41
go check it out. The book's blue. It's got a piece of blue luggage on the front of it, in case you're looking for it and you you can't find it. Pam, thank you for doing this with me. I really, really appreciate it.

Dexcom sponsored this episode of The Juicebox Podcast. Learn more about the Dexcom g7 at my link, dexcom.com/juicebox, earlier you heard me talking about blue circle health, the free virtual type one diabetes care, education and support program for adults. And I know it sounds too good to be true, but I swear it's free thanks to funding from a big T 1d philanthropy group, blue circle health doesn't bill your insurance or charge you a cent. In other words, it's free. They can help you with things like carb counting, insurance navigation, diabetes technology, insulin adjustments, peer support, Prescription Assistance and much more. So if you're tired of waiting nine months to get in with your endo or your educator, you can get an appointment with their team within one to two weeks. This program is showing what T 1d care can and should look like currently, if you live in Florida, Maine Vermont, New Hampshire, Ohio, Delaware, Missouri, Alabama, Mississippi, Iowa or Louisiana, if you live in one of those states, you. Go to blue circle health.org to sign up today. The link is in the show notes, and please help me to spread the word blue circle health had to buy an ad because people don't believe that it's free, but it is. They're trying to give you free care if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. It's ready to go right now. And like I said, they're adding states so quickly in 2025 that you want to follow them on social media at Blue circle health, and you can also keep checking bluecircle health.org to see when your free care is available to you. Today's episode of The Juicebox Podcast was sponsored by the new tandem Moby system and control iq plus technology. Learn more and get started today at tandem diabetes.com/juicebox, check it out. Okay. Well, here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Uh, why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app, go to YouTube and follow me or Instagram. Tik, Tok. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page you don't want to miss. Please do not know about the private group. You have to join the private group as of this recording. It has 51,000 members in it. They're active talking about diabetes, whatever you need to know. There's a conversation happening in there right now, and I'm there all the time. Tag me. I'll say hi. The Diabetes variable series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about travel and exercise, to hydration and even trampolines. Juicebox podcast.com go up in the menu and click on diabetes variables. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast? You want somebody to edit it? You want rob you?

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