Scott Benner 2/21/25 Scott Benner 2/21/25

#1440 Fox in the Loop House: Part 5

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

Even more Kenny!

+ Click for EPISODE TRANSCRIPT

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

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

It took some time, but I got Kenny Fox to come back. If you're not familiar with Kenny, go look for Fox in the loop house part one, two and three. Those are episodes 312, 313, and 420, if you're interested in looping, you should listen to the fox in the loop House series straight through. Today, Kenny and I are going to talk about night scout and data tracking. We're going to talk about basal adjustments and insulin on board Kenny's new coaching service, understanding loop predictions and adapting to stress and daily routine changes. 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. 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 Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about mis Bolus is or miscalculated carbs, thanks to meal detection technology and automatic correction doses, learn more and get started today at Medtronic diabetes.com/juice box. Today's podcast is sponsored by us Med, US med.com/juice box. You can get your diabetes supplies from the same place that we do. And I'm talking about Dexcom, libre, Omnipod, tandem, and so much more us, med.com/juice box. Or call 888-721-1514, if you're looking for community around type one diabetes, check out the Juicebox Podcast, private Facebook group. Juice box podcast, type one diabetes. But everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast, type one diabetes on Facebook. Ken, you are on three of maybe the more popular episodes in the podcast about algorithm pumps. So let me see, do you know the episode numbers, or should I look for them?

Kenny Fox 2:52
I remember they're, like, almost a year apart. I remember that part. I just looked at the numbers this morning. They're in the hundreds, like 300 or something. Wow. So

Scott Benner 3:01
you were on originally, episode 312, Fox in the loop house part one. We did part two. Episode 313, so it was just one after the other. Was probably just a thing. I split up into two, but then we had you back again on episode 420, for Fox and the loop house part three. Your last name is Fox, and we talked about loop, and for some reason, that's the title that came to me. So there's no other reason why they're called that, but they're very popular, because I think not only do they do a good job of going through what loop is and how you use it and how I used it back then. But also, because a lot of that information, I think it grows people's understanding just of how algorithms work in general. And you can apply that to honestly, if you're on control IQ or, you know, Medtronic or omnipotent, like wherever you're finding your algorithms at, you know, I don't know what else is there now. Twist is coming, and I let. No, I let. I guess you can't really do much with but, you know, like all these different algorithms that are out there, the way they work informs you about how you think about insulin, and then you can kind of reverse engineer what you've learned and put it back into your management I think that's where, like, the leveling up comes from. Do you agree?

Kenny Fox 4:20
Yeah. I mean, we tried the control IQ for six weeks, we had a pump given to us, and we tried it out, and we got similar results to loop using some of the same techniques and the base understanding that comes with using a system like loop, and you can definitely translate major pieces of this to other systems. I've helped a few friends on Omnipod five, and just adding things like knowing that fat and protein needs some insulin and carbs can really help balance out that total daily dose piece of the algorithm sometimes people end up staying higher just because they're not bolusing enough, and therefore it thinks they need to hire basal. And you can fix that by just making sure. You dose more, and you dose more by adding in the fat and proteins. It helps pretty much in any system that we've used before. And the twist one will be using a form of loop when it comes out.

Scott Benner 5:10
Oh, that's awesome. See, I just learned something. Though it's awesome using tide pool. Tide Pool loop. That's excellent. Okay, great. Anyway, so listen, even if you're not a looper, my point is, check this out if you're using trio. If you're using, I mean, what else is there that's DIY at this point,

Kenny Fox 5:24
Android, APS, trio, the main ones, yeah,

Scott Benner 5:29
loop. Or one of the, one of the systems that you can get retail. I think the information here is going to help you in one way or the other. So let's just jump right in. Tell me where you want to start.

Kenny Fox 5:38
I guess I'll start a little bit with me. I been in the DIY community for a while, helping out, doing videos on loop and learn and on the podcast with you, and just helping people in the Facebook groups. And late last year, I got laid off and decided I wanted to take my coaching skills. I was doing financial coaching, budget coaching for couples, and that was fun, but it was kind of a little side hobby, and I thought I could probably do this and teach people how to use loop better and do it all the time, and help more people that way. So that's what I'm trying to do. We're starting off early 2025 with a course on how to change your settings, how to know how to read the data and know how to change your settings and loop. And we'll go from there, see how it goes. Help

Scott Benner 6:19
people your web address because I want you to say it, because I'm I'm delighted by it,

Kenny Fox 6:23
because a lot of people reach out to me, saying, Hey, listen to your episodes on the podcast. You know the podcast is Juicebox Podcast. In case you don't know, I went ahead and just leaned into Fox in the loop house. So my website is Fox in the loop house. Calm. You can find me Fox in the loop house on Facebook and Instagram and YouTube, so just lean into that identity piece of it, since that's where a lot of people find me. So I thought I'd just go with it, and you told me I could years ago when I mentioned it. So you made my

Scott Benner 6:51
day when you told me that was the URL. I have to say, it's like, oh, that dumb thing. I thought up, I've reshaped Kenny's life with it. I

Kenny Fox 6:58
thought I was a little dumb too, but I couldn't think of anything better, and that's how people know me, plus it has my name in it. And so it means I don't have to worry about, where do I slip my name in, or making a whole LLC, or whatever I need to do for that, because my last name's in there. Well,

Scott Benner 7:11
the way I have to tell you, the way I think it occurred to me back in when I when I thought of the title, was that to me, like the DIY algorithms, you know, are this not siloed, but a thing that not many people knew about? So I thought of it as almost the club. And then I was like, oh, and Kenny's like, he's going into that house and, like, showing it to people. And then, I don't know, then your name was Fox. And I was like, this is good enough. I like this. I like, I like the idea of you, like going into this place. It probably seems secretive to other people. It isn't, but maybe it feels like unapproachable, and you were just in there going, like, look, here's all the eggs. Let me show you. You can just have them too.

Kenny Fox 7:49
And back then, it was a little chaotic. It's definitely matured, you know, the loop and learn groups. Got a whole group of volunteers, and so sure, we're funneling information a lot easier to people, but definitely back then, it was a little chaotic. So little fox and the hen house sort of play on words. Works out how it

Scott Benner 8:03
felt to me. So, oh, so that's awesome. Okay, so let me ask before we jump right in, doing financial coaching for people, there must be things that you've learned about how people learn and how they're motivated that you're moving over to this. Am I wrong?

Kenny Fox 8:17
No, I mean, part of it is just communication. When I was doing the coaching, I tried to make sure that, like, both the husband and wife, for example, if it was they were married, were both showing up because they're both trying to engage in goals, where you're going stuff you're trying to achieve, and putting people on the same page, even if one person that wasn't totally bought into it, at least they heard the words, had a common vocabulary to like work through problems together, and so I thought about doing the same thing for loop coaching, making sure that you know both parents are there, or that the type one is there, maybe with their spouse. I haven't carried that over, but it has been good to reinforce, or I'm finding that people reinforce the same language and words that I'm giving them with their kid, if they're old enough to start taking it in, and so they're picking it up on their own. It's been good that way. That's

Scott Benner 9:06
excellent. I'm just it's interesting to see how people's careers build and and sometimes lead to similar but different things. So this is the

Kenny Fox 9:13
well, knowing that you need to acknowledge the emotional side of things too. I'm a little more technical and just trying to solve the problem, but trying to make sure you they people feel heard, and that they can express their concerns, that you can empathize with them, gets you a lot further. And they and they, they listen, they take stuff in better. Yeah, so it works all the way around. Cool. So where

Scott Benner 9:34
are we going to start? We'll start with night scout. Diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. Us. Med has done that for us. When it's time for Arden supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden, this is your friendly reorder email from us med. You open up the email. It's a big button that says, Click here to reorder. It, and you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives, we click on a link, and the next thing you know, your products are at the front door. That simple, US med.com/juice, box, or call 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put this stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call 888-721-1514. Or go to my link, us, med.com/juice, box. Using that number or my link helps to support the production of the juice box podcast. Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox

Kenny Fox 12:07
uh, yeah, I'll just kind of mostly step through the modules of my course at a high level, and so people can get an idea of what we're going to cover. And it's a lot of this stuff. I'm not worried about keeping the information locked up behind my portal. The information is free. The DIY system is free and open source. If someone wants the help to be with me or my community, then that's when they can show up. So we'll cover, you know, most of what I cover here, if it's helpful and it helps people, then that's great, well, but usually, yeah, I just kind of call it Module Zero, as we kind of start with night Scout, because we're going to be looking at that a lot. It's your dashboard, it's your view into all the data, especially as a caregiver, but loop only holds only shows you about six hours of information in the past, so you can't always go back and, you know, look at how the morning went, or your overnight basal was by the time you're off work or school's over or whatever. So night scouts, where we're going to live, there's just a few things. I don't take a lot of time to teach people how to use night scout. We kind of just do it as we go, and it's integrated into the process because through repetition. But there's a couple annoyances I'd like to highlight for people that people don't like about night scout. One, it's busy, and can't really fix that, because there's a lot of data that's important. But what we can do is make sure that some of your like pills, a little squares, little nuggets of information on the screen are turned off that you don't need, and then make sure there's stuff that is on that you do need. Some people use their night scout and don't have the prediction visible or the basal rates visible, so they're missing out really important pieces of information when they're doing it. So we just go through the settings and figure out that one. But there is this one cool setting that if you're using night Scout Pro. It's built in otherwise, if you have access to your little configuration variables that you have to go in and tweak. There's this one called device status, one word, underscore, days. And what that does is, on that first screen, that dashboard of night Scout, you can actually see two days worth of information on the lower graph, and it shows you, like a little snippet, you know, the bigger version on top. It's like a smaller section of time. But what you do is you scroll backwards and you click and drag on that bottom section of night scout. You can only go back 24 hours before you lose the kind of prediction information, all the details. But if you add this variable, device status, underscore days, and change it to two, you get two days of information there. Well, 48 hours. That's really helpful. If you know you're trying to figure out there's a pattern, and I feel like most patterns you would look at are within the last two to three days. So if you can access most information, you pretty much don't need to leave that front screen of night Scout, which people appreciate, because while the reports are useful, they don't want to really want to go digging into it. They just want to pull it up and take a look at it. So okay, that's one of them, and then the other one, the other big one, is the alarms. It makes a nice, loud, annoying alarm that's hard to tune out in night Scout, but most people have Dexcom follow, or they'll using the loop follow app or something else that has alarms, and they just don't need them. So they might remember to go into the menu on the side and check all the. Boxes and turn them off. But then you got to do it. Every time you are on a new device or whatever, it goes off. When you're in a meeting. You have it up at your computer at work or whatever. If you go into your configuration variables, you can find all the things that say alarm, and it's usually like a ON, OFF or true, false option. You can go turn those off. I walk through those, I'm going to put out a little cheat sheet for how to just buzz through and turn these things off on my website at some point, so everyone can go look at it, but yeah, just turn off the alarms by default. And that way, if you want them on, you can turn them on if you want them on for the school nurse, and you can talk to them and have them turn them on, but at least they're not on all the time. And you pull up night scout on your phone, and all of a sudden there's an alarm going off when you're in the middle of a meeting or whatever. So that's kind of the big stuff.

Scott Benner 15:40
How do you turn off that crazy music that plays when it loses its signal? Yeah, that's the

Kenny Fox 15:44
alarm. So there's a setting in the back that's time ago or time ago, urgent and time ago worn. So if you find those, if they're not defined in your Heroku, for example, you can just go into the configuration variables and set those to false. I can, I'll put the I'll add those to the list as well. Those are the sneaky ones that you can't turn off from the main menu screen in night Scout, you only turn off, like the highs and lows, but you can turn off. There's a few more that are hidden in there, like when loop is not looping, or and a few others. So yeah, that annoying music is those alarms. And I think most people are already have alarm fatigue, and they don't need it startling them when it turns on after like, 10 seconds of loading the screen. So that's that's a big one. And then the last couple things, just make sure you can see in night Scout that I think is really cool since we talked last four years ago, now that when you start a new pod, or when you start a new Sensor Loop, picks up on that and updates this little section called the cage, or cannula age and sage sensor age, and it updates that in night scout. So now you can see how old the pump is and how old the sensor is, which is super helpful, because you as the caregiver don't have that information readily available, index con follow or anywhere else. So I find it useful. When you're looking at maybe sticky highs, you say, well, How old's the pod? If the pods getting to be closer to that three days, then you know we're increasing our chances that there's a problem there. Or just, uh, just for planning for the rest of the day, like, do we need to change the pod or the sensor before Tesla goes to school or whatever? So that information is helpful to have, and now it doesn't require manual logging, which I used to do, but now you just use loop, and as you change those devices, it uploads this night Scout, and it's nice and available for you. That's a really practical one for people. Cage

Scott Benner 17:20
and sage are big parts of how I use night Scout, and they're a huge help with me, especially when Arden's not living here, and you can say to her, hey, look, I don't know if you saw this or not, because I know you're busy and everything, but your pod's going to expire at five in the morning. Please don't go to bed with that pod on. And you know, there's been times where she said, Okay, great, I'll, I'll do it before I go to bed. And there's times when she goes, I'm gonna get up at five in the morning and change my pot. That's my plan. And I'm like, Okay, fine, you know. But at least you can kind of remember and remind, I guess, a little bit. But your point about using it for, hey, why is this not working all of a sudden? Like, I do it all the time, you know? I'm like, the Bolus happened. Nothing worked. I don't know why. Oh, look at this. This pod's two hours from being shot like that kind of thing. Or I don't trust this number, all of a sudden, and I can't see her Dexcom, so I go look and, oh, the sensor has been on for nine and a half days, or something like that. During COVID,

Kenny Fox 18:12
my wife's grandmother was living with us. She couldn't go anywhere in other facilities or whatever, and she has type one. I never really got good at managing it. And she ended up kind of forgetting to take her insulin over time and almost in DKA. And we sort of fixed that at home, got her drink water, and then from there, kind of took her management over and added, slapped a Dexcom on her, slapped a pod and loop on her, real fast, and then got those devices covered through her insurance, and had her looping. And at some point she ended up leaving our house too. So that became even more critical to know, like, when do the devices need to be changed? We found a nice place that would, without charging us extra, would take care of changing the hardware. They were super willing to do that. And so we just night scout was important to be able to track when those things changed. And so having those pills was pretty was pretty critical for that. So definitely nice for a caregiver perspective, for sure,

Scott Benner 19:02
and I realized we didn't do this. But if you are listening and you're like, Oh, this is all exciting. I don't know what night scout is. It's an app that I have on my phone, for example, and it just lets me see in real time, Arden, who's using trio, not loop, but in real time, it lets me see where she Bolus is how many carbs she put in the things that Kenny just discussed. It lets me see when her basal gets ramped up or taken down, etc. It's pretty awesome. Yeah, it

Kenny Fox 19:30
is intended as like a dashboard for caregivers, right? And we used it when Tessa was on shots at the beginning. And we would log all the shots and stuff in an app, and open another open source app, and it would push it up to night Scout so I could see when my wife was giving injections or Tessa was eating. I mean, sometimes we forget to enter it, but it was helpful for me to learn from afar while I was at work, just to see all that data laid out. And so it's really intended just for logging data, and yeah, now it's a dashboard you can use for having automated. Stuff like loop and trio upload data to it so you can see data in real time, which, you know, I take for granted after almost six years of using it, that people don't have access to, that you can't get the T connect data or the Omnipod data in real time to be able to see, did your kid Bolus and how much and what did they enter? Did they, you know, enter too much, or whatever that is. Yeah, you can make a lot of decisions on that. I have to

Scott Benner 20:23
admit, it's not a thing I look out every day, but when I need it, that it's there is irreplaceable, honestly. So, yeah,

Kenny Fox 20:32
awesome. Yeah, that's it for night scale, I mean. And then after we kind of get that settled so everyone can see what they need to see, and I don't have to worry about them saying, Well, where is that we're all set up. Then we start getting into the basics. Rather than go over the kind of core of the prediction pieces, which I do cover later, actually just start with basal. Because people want actionable stuff. They want to make sure that their settings are right. And as you've discussed multiple times, the basal is foundational right if you don't, if you don't build your diabetes house real well, which is on the foundation of basal then kind of everything is suspect, everything's out of control. Loop gives us a lot of data. I covered this in our one of our other episodes, so feel free to go back and listen to it, you know, for extra information. But we do cover how you can see when your basal is probably too strong or too weak in loop, because it gives you all this information to be able to see where it is. Using insulin on board a while ago when Arden was looping and we helped dial in some crazy basal changes for Arden basal information, I had a very similar think when we were working together, talking a little bit Arden's needs were dropping. And there's another kid I'm helping right now, who's 11, and he just went through, like, a big growth spurt, like all at once. There's no wouldn't matter what system he was on, it couldn't have he just had his he has basal rates increase like a half a unit now, more than half a nice coming up on doubling his basal rates all in about 48 to 72 hours. Just wild. But the mom's saying, Well, what do I do? And I can go back and look at this information. We'll talk about how to get it and give a good guess about where to set the basal. I mean, I wouldn't normally like nudge basal more than, you know, point oh, five or point one on the pod. We only had to change it, like point 4.5 in a single day, which once we did that went from cruising in the three hundreds and stressed and bolusing all the time just trying to get them to everything settling down to the 90s again, so within a few hours. So it's a definitely useful information.

Scott Benner 22:26
How do you do that? How do you look at the information and say, Hey, normally I would turn this dial very slightly to be careful, but in this situation, I feel very comfortable moving at this because what? Because I saw,

Kenny Fox 22:38
yeah. So the iob overnight is one of them. And I think one of those things that's helpful is that I try to keep a pretty simple basal profile. I on the podcast before, we were using one basal rate. And I, you know, I've come to learn that that is a little more common with the younger kids, but also more common with, like, mild honeymoon. We were out of like, major honeymoon, for sure, but having slight variations in your basal rates. Totally fine. People shouldn't feel bad about that. I used to be a pretty big proponent of one, just to kind of get people to simplify. And I think keeping this simple as you can is good. And so when things change, I just kind of changed all so that's the first thing I do. Is pro Tesla. She's got, I'll explain this a little bit, but I have some like normal stuff, but we've only got one rate, maybe two rate, maybe the night and a day rate. And you kind of play around with that looks like. But when I find a pattern that works for Tessa, it's about a point one an hour difference. She uses, like a one and a half units an hour. It's a lot, but so like, a 10 20% difference or something between night and day for her has been working in the last few years. And so when I look at this data, I'm going to talk about, I'm just to make the change everywhere. All the rates change when I look at it overnight. So here's how I do it. In loop, it's modeling insulin pretty well six hours, nice even like small decay rate. It's got a pretty accurate representation based on the like, if you open up the paper inside your insulin vial and actually look at the graphs in there, it shows the insulin last six hours, and loop uses a pretty close line to that. And so what I'll do is I'll just grab the bottom section of night, scout the lower graph, and just slide backwards and look at the history, and we just look at, you know, how the night went, especially, you know, 345, AM, multiple hours away from food or anything else you might have messed up with the fat and protein and whatnot from dinner, and see where everything settles out. And look at how much insulin on board there is as you go across that line. If you're pretty flat and have consistently, like, positive insulin on board or negative instant on board, you'll find that there's generally around the same number kind of across that line. For example, the kid I was helping with earlier had over a unit on board just and he's like, high at like, 170 and just constantly over a unit, and whenever it would get under that, his blood sugar would go up. And so what we do is we can use that information to say, Okay, well, obviously the basal is not right. So how much insulin is this? How much more we have to move the basal up to make this? Instead of one unit on board, how about zero units on board? Like be nice and flat and level. So. And so we just take the kind of average iob in units and divide it by the length of time that insulin lasts, which is the DIA duration of insulin action at six in loop. So we just take the iob and you divide it by six. So an easy example is point three units of insulin on board that's keeping you level, but usually probably a little higher than your correction range. Divide that by six, and you get a unit per hour. You just divided units by hours, and so you get a point, oh, five unit per hour, basal rate change that you should make. And if you make that change, that point three units will actually turn into zero insulin on board, and you'll be level and probably more likely down into your range. And if you're seeing negative, you just add the negative in front of the answer there, and that means you need to decrease your basal rates by point oh, five units per hour. It works out pretty well in the case of this kid with like, one 1.2 ish insulin on board was at a point two change in insulin needs. So that's, I mean, that's a pretty dramatic change that would take some guts to modify without a lot of experience, but instead, you can supplement that experience with math. So yeah, point two unit per hour basal change. So we bumped his basal rate up, and then Bolus a little heavy, because the insulin on board isn't real, right? The insulin on board says he's got a unit, but that's really should be, you know, your new kind of zero set point. So you Bolus little extra to get him down. And as Luke turns the basal off to get him down, the numbers sort of like fix themselves, the iob becomes a little more accurate. And then, you know, within a couple hours, he's down in the 90s, instead of, like the 170s when he woke up. So then you can go about the rest of your day with more confidence. And in his case, he kept needing more and more insulin as the day progressed. And then you could see it in the nighttime numbers for sure. And then you get a nice number again. You make the modification increase the basal rates, and then the next and the rest of the day is, you know, mostly good till the evening, when he's starting to need more again. And so he did his three days in a row. For Tessa, it's usually like kind of a day, and then hold that for a day or two. And then we're done times a week. And then, you know, maybe it'll change back down or up, but you get some consistency. Sometimes you gotta change it every day. Sometimes it's, you know, a week or two without having to make a whole lot of change. But that's basically the math that gives you. It's the only real objective thing you get with the data. The rest is kind of art. You're gonna be tweaking carb ratios and ISF and dealing with activity and counting food is difficult, but the basal stuff is pretty objective. When you look at that information. Do you work with adults ever? Yeah, I've had a couple of adults that I've helped this year trying to figure out my course content. They've had a lot of, lot of fun, lot of learning, and it's been great. Naturally, the caregivers ended up coming to me, because, similar to you, we're parents, that's what we do, and we talk from a perspective without trying, because that's what, that's our lived experience. But yeah, I get I get both.

Scott Benner 27:43
Now you were just talking about how to make this adjustment. Are you planning on just taking people for coursework, or are you going to do a la carte too? Can someone get a hold of you and just say, like everything's upside down here? I don't know. Why? Could you just figure it out and tell me? Why? Do

Kenny Fox 27:58
a quick look? Yeah, I've done that. That's kind of been my MO. Throughout my time in the DIY space has been someone asking for a lot of help and to get all the information and context. You know, maybe they'll, they'll reach out to me, or I'll say, Hey, if you want, you can send me your night scout. We'll take a look together. I'll ask a couple questions around, like activity and other stuff that may not be obvious, and it within a few minutes, I can take a good stab at, you know, doing this math and a few other adjustments to get people in the right way. I don't know if I'm going to be offering that as a service, kind of standalone, probably, but most likely to be the course. And then I'll have a I'm going to create, like a little support group on the back end that's pretty affordable, so people get through the course. If they want to keep hanging out for not too much. We can hang out and, um, go over that stuff regularly, but I'll probably open up the doors for just a quick check in. And I don't mind people messaging me occasionally. If I have space, I'll, I'll message them back, but that time is going to become a little more, a little more limited. And the other thing is, I can, I have a couple of videos on loop and learn right now, and I'll put a few more on my YouTube channel in the near future that are just me talking through that exact scenario, somebody sending me something, ask them a couple questions and make some changes. So again, none of it's hidden. It's all it's all up there on on the YouTube. So you can kind of see me talking out loud with someone on the phone, usually a parent, and the adjustments we made. So yeah, yeah. Well, I

Scott Benner 29:19
mean, there are going to be some people who definitely just want to understand and the course, makes a lot of sense for that. And I wonder if the people who are just really flustered, if you could unfluster them a little bit, if that wouldn't open up some mental space for them to say, hey, you know what? I could learn more about this. Like, maybe just get out of the hurricane long enough to, like, settle yourself and think All right, now let's figure out how not to get back in the hurricane again. But I don't know if it's possible to do the figuring while you're spinning is what I'm saying. It

Kenny Fox 29:50
helps. It does help. I've seen it help people. I That's why I just reach out sometimes and help people, because they are spun up so much they can't take in any more information. They're. Fighting the system. They were maybe fighting it before loop or something big happened, like these basal rate changes, this puberty stuff kicking in, and now they they feel like loops been great for years, and now they're sideways. So it's definitely something I'll be looking into. You guys can pay attention to my website and see if I offer that. Right now, I'm just focused on trying to get the course out the door, but it's definitely I love meeting people and hanging out for a bit and putting them on the on the right way, so they feel like they can walk away and have things a little more sane, so they can start to make more mild adjustments, right? Yeah, it's been fun.

Scott Benner 30:29
Okay, do we have more in this section? Or can I ask a disjointed question before we move forward?

Kenny Fox 30:34
I would just highlight a couple things in the basal just so people know if they have kids with low basal rates. I remember doing that being the point 1.1 5.2 those kinds of things. And with this kind of exacting math loop does with the insulin on board. It expects zero insulin on board to make you level. And sometimes your kids just live between the rates their actual basal needs are just between what the Omnipod can deliver, which is a benefit to something like a tandem or something else where they have smaller increments, you can step up the basal. So if you guys are in that boat, just like give yourself a little bit of break, use the numbers the iob to help guide you, and just pick on which side of the of the fence you want to be on, on the slightly heavy basal or a slightly lower basal. And just try to maybe adjust the carb ratios and other things to kind of compensate knowing you're either heavy on the basal or light on the basal, it's a tricky spot to be in to get it just right, considering loop kind of really wants it to be exactly right. It's not very forgiving in that sense. So I think that's important to know. I was going to ask you a question about this. One thing I find challenging lately, as test has hit puberty, more near 11. You had mentioned before that sometimes Arden would get real sensitive in the evening, going to bed. I experienced for the first couple times in the last few weeks, like just a big drop, a big it looks like you collect a bunch of negative instant on board in loop terms, where blood sugar just drops and falls out, and we treat it. And she comes back up, and she goes back to sleep, and then she's fine, but it's just crazy. It's like, almost like she didn't need any insulin for like, a half an hour or an hour. Did you ever experience any of those weird drops? I hadn't had those in my six years of doing this until just recently. I

Scott Benner 32:14
don't know how to explain them, other than it feels like when she closes her eyes and relaxes her insulin needs go down. So

Kenny Fox 32:26
I don't know the whole night, though, right? I think you've expressed it's the whole night, though.

Scott Benner 32:29
Arden uses a different basal rate from bedtime until she wakes up, right? Yeah, and if she sleeps in, then that's the only time you have trouble, because the the new basal rate comes on for like, general days, you know, the day she wakes up. But if she's suddenly like that, I don't have a class, I'm gonna sleep till noon. I almost have to remember to get up in the morning and do it like I'll do a Temp Basal through night scout and take her basal down to another level for a few hours, and then hopefully I notice when she wakes up, because I want it to go back to where it is as soon as she's awake. So to be honest, I don't exactly know, but to me, that's what it feels like. There are things that I've seen in throughout this time that I just trust now, like, here's an example of one, if your blood sugar stuck a little high and you go make a number two, I expect your blood sugar to come down afterwards. I don't know why. I don't even think I care why. I just know that I've seen that so many times it happens. I mean, Arden's a young person living in the world. She's got anxiety and stress like everybody else, and I expect that part of her settings are due to that. And I expect that when she closes her eyes and relaxes, that her needs change drastically, pretty quickly as soon as she falls asleep. The problem with a 20 year old is they don't just like go to bed every night at 10 o'clock. I found myself like I can't turn the basal down too early in the evening, because what if she sits up till two in the morning? That's a different problem, right? So I look a lot at the when she goes to bed, and the insulin on board. Even though you've explained it to me in the past, I think somewhere in here, I'd love for you to explain again, how you use the insulin on board number to fix a low blood sugar. Like, how do you know based on negative iob that this many carbs is what? Anyway, we'll get to that. But like, let's not forget to get to that. It's a note I made. She goes to sleep. She seems to relax. That happens. I think the same thing. When people say they get in the shower and their blood sugar goes down, I wonder if the hot water doesn't just hit the back of their neck and they just forget about their worries for a while, and suddenly they've got more insulin than the adrenaline and stress. Yeah,

Kenny Fox 34:38
I've, I've appreciated that more. I used again, used again, used to be kind of like, oh, we always need a lower basal rate during the day than we do at night or a flat one. But I have seen working with people more intensely that I even have a friend as an adult, same thing, going to work, going to school, raises their blood sugar. They just need more insulin as a result of what I can only imagine is. Stressed. My daughter, Tessa, got the same problem when we moved across the country just in August and started a new school, and she was super amped up to go to school. I think she was just excited to have a different school. She's kind of partially hybrid home school before now she's going to public school and middle school, right? And she just needed more insulin, you know, for the first few hours of the day, and then she would get off, you know, we're not the bus, so we get her from school, and then her blood sugar would kind of drop. So definitely, and it's like gone away, that that impact has disappeared, yeah, as we've gone through the school year. So it's definitely, there's definitely other things to pay attention to that you got to watch out for. I have a question for you real quick, though, does Arden need the same increase in basal on the weekends, or is it just

Scott Benner 35:38
school days on the weekends or school days. Yeah, her basal, her No, her daytime basal is seven days a week, so whatever her level of life is, it's pretty consistent with her. I mean, I'll joke, like, not just joke, but you can see her walking to a test because her blood sugar just like, like, if she leaves her dorm room and she's going to a test, I watch her blood sugar start to rise. It can go from 80 to 160 and the algorithm jumps in and it's like, Hey, what's going on? And it'll like, hold at 160 now my inclination in the past would be like, let's Bolus. But what I've learned to recognize is that when the test is over, it comes back down on its own. So,

Kenny Fox 36:21
yeah, that adrenaline or something like that, that's causing that rest. I

Scott Benner 36:24
wouldn't ask her to touch that. It's just a benefit of using an algorithm that you you know, because, you know, without that algorithm, you wouldn't just be 160 it would be 300 you know, like it would just keep going, because it's, it's pushing, it's pushing with basal, it's pushing with boluses, etc. It's magical. Kenny,

Kenny Fox 36:42
yeah, it's nice to have an algorithm, I kind of call put a lid on it, right? So even with that, with Tesla, when she has basal right knee changes overnight, or this growth spurt thing we were talking about earlier, yeah, he was 170 which is obviously a problem, if the target and loop is like 100 but what would it have been if you tried to sleep the whole night. You know, without that, with just a regular pump or shots or whatever, making that adjustment would be very difficult to do. I wanted

Scott Benner 37:07
to go back to one more thing, that if you are listening and you have a smaller child who's experiencing overnight growth spurts like what I just said might sound crazy to you, because your kid might go to sleep and their blood sugar shoots up all the time, but Arden's beyond that. Now it is really interesting. The thing that you mentioned earlier about basal rates, because I can even though it's been years since we recorded those episodes together, I remember you advocating for one basal all day long. And I don't know if I said it out loud in the episode, but I do remember thinking, Well, that's easy for you to say, because your kid hasn't hit puberty yet, I

Kenny Fox 37:43
think you did. I think you sneak it out, or maybe it was after the call or whatever. But yeah,

Scott Benner 37:47
you know, your bigger picture understanding has to evolve, as you know, if it's a kid, growth spurts happen, I mean, but also could just be weight gain. If you're an adult, you gain 20 pounds, like a lot of these things are going to change for you. I just saw something really interesting the other day where, when Arden would make the trek home from school and drive herself, her blood sugar, she I noticed her having to Bolus a little more. But the other day, she made the trek home, and my wife was with her, and my wife, I think she suckered my wife into driving and like, she didn't need as much insulin for the ride home, because, I think just the she wasn't, you know, hold on to the steering wheel, staring at the road, trying not to die, like, you know, like it's just it was more relaxing to be in the other seat. So there's a lot of stuff that's going to impact your insulin needs.

Kenny Fox 38:35
Maybe, maybe when it starts settling and she's driving, you'll feel like she's matured in her ability to drive. It'll correspond, right? I

Scott Benner 38:41
don't know she's a good driver. I just think she might be a fairly aggressive driver.

Kenny Fox 38:47
Nice, nice. Yeah. I mean, I've seen I was counting through my messages, like, a year or two ago, and I think I have more than 600 different people or more that I've like, gotten messages from in Facebook over the years. And so, yeah, since those episodes, I've seen a lot more graphs, a lot more ages, and then experienced more too with my own daughter. So it's definitely, like, opened it up. But you know, the idea of keeping it simple is definitely guiding for a lot of people. Hey,

Scott Benner 39:12
let me jump in here and ask you a question with opening up box in the loop house. Calm, you're not a doctor, I guess is my statement. Like, so like, how do you set something like this up? Like, what, what was the back room to getting something like this set up? A little

Kenny Fox 39:24
bit of concern. I definitely have a lot of like, notices that say, Hey, I'm not a doctor. Everyone understands that. And when I'm going to be talking about whether it's one on one or with the course, I'm always talking about how this is what I do for my daughter, this is the and then we'll talk about the data. I don't get into the code, but I do reference the algorithm, so part of it's just strictly teaching math and function. And I'll reference some, you know, studies and things like that, just to look at, like the facts. And then I'll tell how I apply it to Tesla's life and the numbers we just talked about and why that math. Works, and so I might make suggestions, say, if this was my daughter's graph, or I've seen something like this before with my daughter when she was that age, if it if it applies, I might change something like this based on the information we just described. So I'm definitely trying to stay clear of saying you need to change this. But this is why the emphasis is on educating people how the system works, and then how I tend to apply it so people can keep up. Because I do find that, in general, my drive to do this lately has been, I just feel like I'm not working quite as hard as some of these other people that are trying putting in more energy and effort into looping and getting worse results. And I don't think that's fair, and I think I've settled on, I worked on dialing back my own involvement, and we do just a couple things that with you understanding builds on. But the couple of things is, wake up in the morning, scroll back, look at night Scout, try to see if we need any basal changes, or if she's starting to run higher. Then I check to see if her pods leaking first, and we address that. And then, you know, we just avoided a catastrophe for the rest of the day, or running higher or running lower. And so it really only takes a minute, maybe less longer if you have to go, you know, change the pod, yeah, but we do those things. And then the rest of the information I can just glance through the rest of the day, maybe end of the day, take a look at the meals, and we'll talk about how we adjust meals a little bit. But I kind of have a certain order. I go through the settings and prioritize those, but the big ones, the basal every night, if it's just a couple minutes. Once I started doing that and making the adjustments, ever since I was on the last podcast four years ago, I've just gotten better at it. If I can teach people to do the same thing, I think they'll be able to put in less effort and get better results, or at least the same results with less stress, they'll know what to what to change. That's one of the feedbacks I've gotten from people is, hey, how do we feel at the end of this? Like, your numbers may not have improved dramatically at the beginning, but the amount of energy and effort it takes to get those numbers is significantly less. You're like, No, I know what to change now. I know right. Basal, I know that's a carb ratio, and I can make the change. And then we adjust, and we move on, rather than mentally, like mulling it over in your head for way too long, trying to figure out what it is. Yeah, that's really what a lot of people get out of the initial modifications, is just knowing where to start. It's interesting

Scott Benner 42:12
to hear you talk about it, because you sound like me talking about making the podcast. There's a way I do it. I don't know. It just works. Here it is. I don't care. Try it yourself. You know, take some of it, take all of it, do whatever you want with it. I do get the same kind of responses back. It's great, like, so in the end, you've, you've got this compendium of information in your head, and you're just going to share it back with people and and let them try to put it into play and see what they do with it. I think it's awesome. So yeah, this is

Kenny Fox 42:36
exactly like the podcast is trying to zero in on loop and and slightly more technical, just so I feel like I can talk objectively about it, and people can make their own decisions. I love it. It's a fine line to walk, but you're my inspiration, Scott.

Scott Benner 42:49
People need the help. Like, they just do, you know, we went from just fast acting insulin and in a pump, you know, however many years ago, and people would just go, like, I don't know what's happening. Like, it's all over the place, like, you know, nobody helps. Doctors don't help you. Like, you know, then that's your hell. That's you go live that life, and you say to yourself, like, well, that's just diabetes. I guess this is what it is. And then that's the level of torture that you now live with every day. And I came along and said, like, I don't think that's right. I think you should maybe move some of these settings around. Learn how this insulin works a little bit, and then these algorithms came along, and it's great for the people it works for, but for everybody else, you know, they used to say, well, that's just diabetes, and now they say the thing doesn't work. Like, you know, I bought the thing. You told me it works. It doesn't work. And now they're just, that's their hellscape, and it goes on forever, like, people need to understand how insulin works, no matter where they're using it. And, you know, I think this is awesome. I'm really excited that you're that you're doing this. Do you think we stop here, call this an episode and move to the next thing? Or do you think we keep talking? I'll

Kenny Fox 43:55
add one more thing, and then, yeah, we can probably go on to, like, food in a different one. I think one of the things you mentioned here is like clarifying things for people, looking at the all the variables that exist, I think with loop, loop is unique in that it's trying to model everything. Is just trying to you, just tell it, and it trusts you. And so it puts the settings out there, and it calculates everything with a fair amount of accuracy, as long as you, you know, do your part. There are other systems that try to handle the fudge factor, which is great, try to help the fuzziness of all the stuff you're entering. But what's cool about loop is, once you settle on like you get basal rates kind of dialed in. It seems to me, when I'm talking to people about this, that it kind of clears the fog. What people say is, Oh, I see so many more things now. So they level their basal rates out, kind of find what works, and they understand what the basic pieces of the data they're seeing in loop is like, Oh, well. Now I see when there's a bad pump site. Now I see when activity is causing a problem. Now I see when fat and protein is causing the problem. I found the same thing for me. Is once, you know, you talked about fat and protein, and we had pretty good settings, that was like, Oh, now I know why there's a rise, you know, 345, hours after a meal. So instead of looking at a meal on a graph as like, oh, well, there's two hours. I don't the meal seemed fine. I don't know why we're going high now and now, as you can see, those pieces, once you understand what the variables are, and you get really good basal. It sort of clears the fog, and people can now know what those things are very quickly, without too much energy, and they can just fix it. They can address it. We can add more carbs or fat and protein or whatever we'll talk about that later, but that's the clear and the fog thing. People need the help. I think because of that, there are systems, DIY systems, that are working on adding layers on top of those basic models to help with that fuzziness, to help to the point where maybe you don't even have to enter carbs, like with trio and all that kind of stuff. But I think to start with loop helps you learn. So either you can learn it by listening, you can learn by watching the videos, or you could try loop out for a little while, and it'll force you to see variables that maybe you didn't quite see so clearly before that have been talked about on the podcast all over the place, especially in like the pro tips and those kinds of things. And you'll just be able to see them working and then be able to address them without really spinning your wheels a lot. So I think that was that's been helpful. The way loop is designed, it really externalizes and draws the picture of all these other things that you can then see. So

Scott Benner 46:22
I really enjoy talking to you, because you do a very good job of contextualizing the thoughts in your head. Whereas I can tell you that by watching night Scout, I've learned a lot about diabetes, but I don't know that I can tell you what, like, I watch the graph, and I look at the graph and I go, Oh, I think the pods going bad, or, you know, like that kind of stuff. It didn't happen the other day, like, I said to Arden in the middle of the day, she's home, and I was like, I don't like this pod. Something's wrong with a pod. And she's like, it's fine. Leave me alone. I was like, Okay, fine. I pinged her a couple times during the day. I was like, Look, that Bolus was too big for what just happened here, and it didn't move. There's something wrong with the site. The site's not right. Blah, blah, I got such a begrudging text from her. A couple of hours later, my pod just errored, and I was like, do I be an adult here? How do I handle this? Exactly? And I just responded back, Scottie knows. I mean, I guess I could really, like, talk it through, but I don't know mathematically. Like, what did I just see that told me that, but I can just tell you that things were happening. There were Bolus is happening and basal adjustments happening, and the results were not matching my expectations. And I was like, this has got to be a site.

Kenny Fox 47:31
Yeah, there is a lot of that. For sure. I have the same kind of thing, and I'm working on trying to articulate what it is that I'm seeing. But part of it is just, I think everyone else is pretty sharp at picking up those things. Once you can get the basal pretty good, like, Oh, now you have more consistent. We'll talk about meals next time. But once you get consistency in your meals, then you when you lose it, like something's wrong, exactly we discussed, like you're, yeah, there's a big Bolus, but it just didn't move. That's strange. And I see the same thing when the pod site. And I get pushed back. Now that my daughter's 11. She's like, I don't really want to change it. So I'm like, Well, looks like there's some staining around the the tape on the on the pod, it's probably leaking. Well, can we just run it for a while? Sometimes we do, right, but at least I know what's wrong once, if she ends up high. Okay, well, we need to change it. And, you know, yeah, let's Bolus it and get it back down. And it's not confusing, it's annoying, but it's not confusing, and I let her make that decision. So

Scott Benner 48:24
yeah, okay, yeah. Well, we'll get to that, because, like you said, once you can clear out some of that noise, everything comes into focus much easier. So we'll do that in the next one. Thank you.

This episode of The Juicebox Podcast was sponsored by us med. Usmed.com/juice box, or call 888-721-1514, get started today with us. Med links in the show notes. Links at Juicebox Podcast com, thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juice, box. 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/juicebox It should not take you more than about 10 minutes if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginnings series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to Juicebox podcast.com and click on bold beginnings in the menu. 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, wrongway recording.com, you.

Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

Scott Benner 2/20/25 Scott Benner 2/20/25

#1439 Slap Bang

Marnie, UK diabetic (with a T1D mother) diagnosed at 17, overcame teen embarrassment, anxiety, and panic attacks—embracing community support.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox Podcast.

Marnie is 30 years old. She's had type one since she was 17. Today, we're going to talk about the mental side of type one diabetes a little bit. We're gonna talk about management, some anxiety she had after a tough low. Marnie was embarrassed of her type one as a teen, but today, she does not feel the same way. All of that and much more right now, 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 Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com Are you an adult living with type one or the caregiver of someone who is 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, T, 1d exchange.org/juice, box, when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about mis Bolus is or miscalculated carbs thanks to meal detection technology and automatic correction doses, learn more and get started today at Medtronic diabetes.com/juice box. The episode you're listening to is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med, you're Marnie. How old are you? I'm 29 soon to be 30. Okay. How old were you when you're diagnosed?

Marnie 2:18
I was 17. I've had diabetes 13 years now. Wow, look at you.

Scott Benner 2:24
Let me move this here off my whiteboard so I can write things

Marnie 2:27
down. I've made some notes. You made notes the stream, yeah, case

Scott Benner 2:31
you don't remember stuff about yourself, yeah, a

Marnie 2:34
bit of that. And also to cull the waffling. So I've got, like, a nice balance, so I've got, I've got some nice notes up.

Scott Benner 2:40
Okay, do you think you're going to be all over the place if you don't have no, I think

Marnie 2:44
so, yeah, yeah. Just like, you know some bullet points, a bullet point everything. So I'm very organized. Okay,

Scott Benner 2:49
all right, well, let's do it then. So how old were you said you were? How old? Like, 17.

Marnie 2:54
Yeah. Okay, yeah. So it was a bit Yeah.

Scott Benner 2:58
And do you have any other people in your family who have type one? Yes, my mom does as well. Do you know how old she was when she was diagnosed? It's weird, because

Marnie 3:07
I've just had a really panicked 20 minute phone call with her before I was like, I need some facts about you, mom. So she was 10 when she was diagnosed, so it was the 70s when she was diagnosed. How old is she now? She is, oh, sorry, mom, 6464

Scott Benner 3:25
Okay, yeah. Do you have other siblings? Yeah. Do you got two sisters as well? Yeah. Do they have hypothyroidism? Yes, my

Marnie 3:33
younger sister does. She's got thyroid issues. My older sister is absolutely fine, and I'm blind as a bat. So we always joke that I really, really got, like, the

Scott Benner 3:44
bad genetics in the face. Your eyesight has not been good. Your whole life

Marnie 3:47
always terrible. Not my whole life, I'd say, sort of early teenage years. It really, really took us off sort of a nose diet.

Scott Benner 3:55
What does terrible mean? Can you see your own nose?

Marnie 3:59
No, not anymore. No, like, I'm very, very short sighted, so cannot see anything, like even my phone. Sort of first thing the morning when I wake up, I have to hold it, like an inch away from my nose. Really tragic. Yes,

Scott Benner 4:10
like, you wear contacts, or, like, real thick glasses.

Marnie 4:14
Well, yeah, I've got contacts because my glasses are an obscene amount of thickness, like proper milk bottle bottom. So, yeah, stick to contact lenses. What's

Scott Benner 4:24
the professor's name in Harry Potter with the really thick glasses? Now, yeah, it's 100%

Marnie 4:30
that vibes when I've got my glasses.

Scott Benner 4:34
Oh yeah. I just figured with your accent, we should just lean right into it. Oh yeah, yeah. How about other, any other medical issues for you?

Marnie 4:41
No, I think me and my sister both started with a bit of Italy go, which I believe is auto immune as well. So we both got that as well. Again. Elder Sister, absolutely fine. So just Yeah, but that's about it really some sort of a health point of view. Okay,

Scott Benner 4:58
so you weren't really growing up. Were. You off to university or off to a job when you were diagnosed, what was happening in your life?

Marnie 5:05
So it was first year of college for us. So it's the two years before you head off to your college university. So it was the first year that sort of left high school, started college. And yeah, it sort of happened over Christmas, really. So I was very, very, very ill in I think it was November. I'd horrendously like, and I didn't I like to pride myself in I don't really get ill that often, and I remember it just absolutely wiped me out. Like couldn't get out of bed. I was so ill. And then that's when the fun, diabetes symptoms started slinking up and appearing but I had a feeling deep, deep down. I think I knew it was diabetes, but I put it off a very long time, sort of telling anyone that I thought it was so it was classic weight loss, and it was over Christmas, and I was eating like a little pig, and I was like, Oh, look at all this weight falling off me. She's amazing, like, to all my friends and, like, jealous, but, and it kind of got to the point where it was end of Christmas, and my mum, like, I've just spoken to, and she said she just remembers me getting up in the night go to the toilet. And obviously her being tight or diabetic as well, she sort of she saw four, four nights, consecutive nights, me getting up in the night and waking up going to the toilet. And she sort of told me, and was like, Look, I don't want it to be this, but I think we need to do a blood Meter Test on you. And the thing is, ever since I was a child, we'd always sort of be like, oh, let's all test our blood sugars with mum's testing kit, and we take it in turns. And I hated it, like I'd run away screaming, crying. My sisters loved it. They chased me with it, and I just would not cooperate. I hated that game where we'd all test our blood sugars, and I never took part in it, and my mum just told me that I literally took home my Sep dad, like almost like pinning me down to do a blood test finger on me at the age of 17. So she said, eventually it was just me hyperventilating, laughing, crying, hysterical, and just trying to get a bit of blood out my finger through the test. So she said she did the test, and I think it was 28 which is 504 Wow. On the conversion, yeah. So she was just like, Yeah, okay, it's happened you're diabetic as well. So got me into the doctor's first thing the next day with an urgent appointment. Think they tested me in the morning, and I was 32 which think is about 570 So straight away it was like, Yeah, your mom's got diabetes. You've got diabetes. Let's get you to the hospital. And I think, I think I was sent to the hospital, and I was not on a drip or anything, and my mom, my mom says they didn't say I was in DKA, but I must have had a crazy high blood sugars for a couple of months at this point. But I think it was just think of, Oh, your mom's got diabetes. Let's give you a shot of insulin. Get you on your way Bye. So, yeah, yeah. And I don't remember having my mom said the same, no, sort of IV, nothing. I just remember sitting at the hospital all day while they sort of gave me a shot long acting, gave me a bit of fast acting, and about tea time, like dinner time, be like, right? Well, your mom's diabetic, so she knows what to do on your way, so just sent me home. Then,

Scott Benner 8:25
did your mom know what to do? Like, was she

Marnie 8:29
yes and no? Because obviously they didn't. Didn't have my like ratios nailed. Didn't know how much longer accents give me. So I think it was just a bit of a wild guess. And I remember start sitting in my mum's car afterwards, and I had this massive sandwich on my knee, and I was absolutely starving to eat all day. I was about to take this massive bite, and everyone's like, whoa, whoa, whoa, you need an insulin for that. Now it's like, and I was like, What? What? I have to wait to eat this sandwich. So, yeah, I think it was a bit of like, just sort of hand me back off to my mom and be like, Oh, she's the expert. Off you go. We'll see you tomorrow. It's fine. So yeah, I remember that sort of first night, and she kept coming into my room like every other hour, checking my blood sugars, bless her, like just kept, kept sort of slinking in and turning on my little night light and checking me even though 17, I could fully have done it myself, but I know that she just wanted to do the best. Yeah,

Scott Benner 9:23
geez, when you think back on that time, did your mom and you have conversations about diabetes? Ever? Did you talk about it personally, or did you talk about it more like a caregiver to a child? You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email, and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like ring. You know how? It works. And I picked it up. I was like, hello, and it was just the recording was like, US med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it? Push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like, a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it us. Med.com/juice, box, or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new islet pump. Check them out now at us, med.com/juice, box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox Podcast com, to us, med and all the sponsors. Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system, the mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox, diabetes com slash Juicebox.

Marnie 12:02
I ended the hour we didn't really, I remember, like, when we got back from the hospital, and I thought of texting my friends, and I don't think I really, like, obviously, I'm alone, giving myself shots up throughout my entire life. But you know, you just don't realize how big a part of someone's life, something is. And I think when I got home, I was texting my friends like, Oh, haha, I've got type one diabetes. We've been joking about it for ages, and I just thought, it's injections and what, like, that's all it's going to be and and I just remember going to sleep that night, and I spoke to him about this since, and I just remember having her just sobbing downstairs. And I think in that moment, I was like, Oh, my God, this. Like, if she's that upset over something, maybe this is a big thing for me, like, this is going to change my life. Yeah, like, we never really spoke about lot of things, and at the time, also I was just, I was, I was too young to sort of register what she was going through as well as me. Because it wasn't just about me, really. It was just, obviously, it was just a big thing for her as well. And I know she was guilty, and she said that to me since, but, I mean, it's nothing anyone could control, so yeah, sure, it was one of those where it was, yeah, a big, a big sort of shock to her, because we've spoken as well, and she, she sort of said she didn't know it was genetic. She didn't know it was sort of something that could be sort of passed on. So it was never something she considered, and any of us could get really,

Scott Benner 13:27
can I ask you have, as an adult, since this, do you find yourself being more compassionate for people like, Do you know what I mean, like, because, like, you know how you like? You see this with your mom, and you don't realize what she's like, what her life is, but you're living with her. Like, do you ever think like, oh, I took for granted what was happening to her, and does that like, spread out to how you how you feel about other people?

Marnie 13:53
I think so, because just getting that sort of viewpoint of, oh my god. Like, I remember she'd have, like, lows and stuff, and it was just like, oh, just what happens to mom? And then since that off the back of it and experiencing the low and experience the highs, and I just, yeah, I can look back now and think I really, none of us really asked the questions or appreciate what she kind of went through, deal with it and have three kids at the same time and work and, yeah, so I do, I mean, I've always been a bit of an empath, anyway, like, and I don't, maybe it did start from there, because I can sort of think back to that time. And I do think it, yeah, I do kind of take people's sort of experiences, emotions, and I hold them quite in high regard, really, when I am dealing with people. So it could very well sort of had a knock on effect to how I am now, yeah, I'll

Scott Benner 14:51
tell you why I asked. Because doing this, like making this podcast, and actually having, like, a big Facebook group, having that big Facebook group, and. Making the podcast has made me listen. I don't think I'm famous, Marnie, I don't, okay, but I think you are. Well, that's ridiculous, but people know, but a lot of people know who I am, right? And I speak out loud, and those people then look at those things and make decisions about how I feel. They don't know me, you know? They make decisions about what I'm thinking, and it's led me, like, even I don't know. Like, you see a famous person and people are coming down on them, or a politician or anybody, and they're like, this is what they're doing. I'm like, You have no idea. You don't know, and this is your assumption based on a tiny bit of information. Yeah. I mean, you can, like, I'm not saying you can't have your opinion. Like, maybe you just don't like me, that's fine. Or maybe you look at a certain person out in the public eye and say they seem to be a bad actor. They don't really want things to be calm, or what I mean, whatever it is, there's certainly you could make good decisions about people, but, yeah, making snap decisions based on something you see on Facebook or in a newspaper or something like that. Like, I don't do that anymore. Like, I just assume that I don't know enough to have a reasonable opinion.

Marnie 16:08
Yeah, yeah, exactly. It's like, you need the full contest context. Are you really about who someone is? And you'll never know that if you if it is someone through Facebook, you never got to know everything about them or the context of who they are. So it's

Scott Benner 16:20
hard enough to know when you live with somebody their full context, you know

Marnie 16:24
exactly, yeah, that's not helping me out, yeah, but,

Scott Benner 16:27
but you know, for like, even when there are people who are like, I think kind of, like, viciously, like, speaking against me, I always still think like, I don't know, like, maybe they saw something that really makes them think that they're the Good guy in this story. You know what I mean? Yeah,

Marnie 16:43
I never, I never understand that about people. Because I did see your Facebook post before that you did well, it's this evening to me about Yeah, don't you, yeah? So

Scott Benner 16:54
I liked it. Oh, thank you. I mean, it's in my head today, because, you know a person who has been methodically posting me and, you know, wherever they can for years, suddenly just showed up in my Facebook group acting nice. And I was like, What in the hell just

Marnie 17:09
happened? Like, yeah, it baffles me. Went

Scott Benner 17:13
through me for a loop. You know, use as an example. Like, I have my assumption about what happened, but I don't know if I'm right or not. Like, I actually think that it's possible that they just kind of like, you know, you can get into a group by answering the questions correctly, and I don't see who comes in, so they get in. And here's my worst version of what happened. They snuck into the group to like, Snoop, and then in the middle of the night, a post came up, and they got confused and didn't realize what group it was in, and they started responding to it. And now I see that they're that they're there, and they probably didn't want me to know. But if you give a more generous, like, maybe they just thought, you know, I keep saying stuff about this guy, maybe I'm not right. I should go look. And maybe they were just there, and maybe they were about to send me a beautiful note that's like, hey, you know, I've said some shit about you in the past, but, like, I see what you're doing here, you know, I don't know. But the point is, is I don't know. So I

Marnie 18:08
just find it all very confused. And I just think it's one of those things where it's just the internet, social media, has made it so easy for people to be so horrible to each other, just because it's behind keyboard and it's not in real life. And yeah, I just, I don't

Scott Benner 18:21
know. I've seen it in families too. They see people are, oh yeah. Seems like it's easy for people, no matter where they are, in fairness. But what, it really made me wonder, like, this, having this be a thing. I'm, like, back room going through today, like, and I'm not going through it. I'm fine, by the way. But good, yeah. It made me wonder, like, Oh, I wonder if you were old enough to, like, look and go, Oh God, we didn't realize this about mom, then you have this personal experience. And if it actually informs your real life or not, that's what I was wondering. Oh

Marnie 18:49
yeah, yeah, 100% Yeah. Like, it's just obviously we'd come to eat, she'd get out needles, she'd have a cheeky shot, and then we'd all eat. And apart from sort of seeing her go low, that was, that was the only thing I knew about it. Mom has to inject at meals, and sometimes she goes low and she needs leucade. And that's it like that. That was all sort of the information we ever took on or even asked about. We didn't even ask about it to be fair, like it's only when it was like finger pricking time, we all wanted, like to mess about that we'd actually ask things about it. I don't remember ever sort of sitting down having a frank conversation with her, just apart from like, Oh, when did you get diagnosed? Or what was that like back when you were a kid? But I think that's as far as it went, really. Yeah,

Scott Benner 19:36
no, I hear you. So do you head off to school soon after this. I

Marnie 19:42
think I did, to be fair. I think I was back in the hospital the day after my initial diagnosis. And why again? I think How did that happen? I think it was too because they just sent me off in some pens like me. Here's the sort of guesstimate. Bye, come back tomorrow. Actually sort you out. So, yeah, so got sent at home, and then went back the next day, sort of actually nailing some carb ratios. And how much longer acting to take. I was back in sort of the day after, and then I think I was back in school quite quickly, to be fair. And again, I think it was the whole thing of my mom's got diabetes. So it was a bit like, well, this, this isn't going to hold you back. You can do everything you needed to do. So I do think I was home for a couple of days and then went back to school maybe the following week. I just remember the first sort of bus journey, because I had to get the bus to get to school. And then it was my first time being on my own since diagnosis. And I remember just thought of being suddenly bus and thought of I felt a bit dizzy or or like I'd stumbled a bit when I got on the bus. And I thought, My gosh, is this? Is this low blood sugar? Should I check? Am I going high? And I remember just doing about eight finger prick checks on this sort of 20 minute bus ride, because I just got so in my head about like, oh my gosh, am I going low? Am I going high? Am I going to make it to college? Am I going to die on Route? I don't know what's happening, so I just remember sort of panic was sort of a big factor when I was going back. But that subsided quite quickly as well. I just sort of, I think, from what I remember, I think slid into quite a good routine. That quite not good because my control was horrendous, but I sort of accepted it. Well, I thought accepted it quite quickly. You

Scott Benner 21:29
just said something and then disagreed with yourself three times

Marnie 21:34
in a row. The only reason I've said that was because I convinced myself I'd accepted it, and it's only recently that actually accepted it.

Scott Benner 21:44
So what did pretending to accept it look like?

Marnie 21:47
Pretending to accept it was, I'll do my insulin. I'll do long acting. So I say, do all the meal insulin. I'll put my finger. And that's that's fine, but I didn't look after myself. So it was like I was meeting the bare minimum criteria to just keep myself ticking over, and I was still going out drinking loads, like doing all sorts.

Scott Benner 22:12
It's the first time I didn't understand you doing what,

Marnie 22:19
drinking and other things, like when you go to a party and stuff, other

Scott Benner 22:22
things like drugs, yeah, okay, go ahead.

Marnie 22:27
Yeah, specific. So just thought categorize it as other things one might do at a party, yeah?

Scott Benner 22:34
Well, I honestly wasn't sure if you meant drugs or sex. That's what I was wondering about.

Marnie 22:39
I mean, Bob, don't spray, but yeah,

Scott Benner 22:44
now's the nice time to say hi to your mom, in case she's listening. I know. Sorry, mom.

Marnie 22:49
I think you knew anyway, so it's fine. So yeah, so I did, yeah. It just wasn't like, it'd be things like. It was basically just me. It was like, I've heard other people say that, like looking after a little Tamagotchi, and as long as I just kind of maintained it a bit to the point where I wasn't really ill, that I was fine with that. So they'd go out drinking, and I'd probably do a test before I headed out. And throughout the night, I'd be like, Oh, my mouth's really dry. Oh, I've been chugging loads of tap water, and then I sort of just rage shoot a load of insulin because I knew I was really, really high, and I'd come back down. And by the time I did a test at like, early hours morning, but a beautiful, like, beautiful sort of number, so I could sort of convince myself that if I didn't test when I was high or low, it didn't count. And that was sort of my mentality with it. Like, if I flip through my blood meter and I see all these great numbers, like, granted, the bizarre times of the day to me, I was like, Oh, those numbers are perfect. Like, like, don't about the in between things I'm experiencing, because my blood meter says it's all great, and I'm doing really well.

Scott Benner 24:02
Would you purposefully test when you knew your blood sugar was good so you'd see a good number? Yeah,

Marnie 24:07
oh yeah, because it almost gave me that good feeling of all right. It might have been hard before, but look how great my number is now. Like, this is amazing. And same with sort of going to the hospital for my checkup, they'd go, I think I went every six months, and I was sort of in Adolescent Clinic, and they made you write down a log of numbers. And I remember just, I'd be sat on the bus out of the way there, and just make up numbers. I'd look for my blood me, because I'd always have to check, I'd check that I had good numbers in there, and then just fill in the gaps, and I'd write really great numbers. I'd throw in the odd high number so I didn't get too suspicious.

Scott Benner 24:43
Here, you were fantastic and, oh well, you missed a little and a better number. Feel like it might be real.

Marnie 24:50
Yeah, exactly, because

Scott Benner 24:52
I needed it. Question, though, at the end, doesn't the A, 1c reflect that that's not the case because

Marnie 24:58
of sort of the I've just. Cute load of insulin to sort of bring myself down. I did have quite a few not bad loads, but lows throughout the day when that be sort of on that roller coaster. So I think the roller coaster helped make my a 1c not look too I think I was sort of in the honestly late sevens, early, sort of eight numbers, when I was sort of around that time. So it didn't look horrendous to them. They were happy. They were sort of like, yeah, your a 1c. Looks fine. Off you go. How

Scott Benner 25:26
far did you go? Did you use different color pens? I've heard people, did you do that? Yeah,

Marnie 25:32
yeah. I had, yeah, I did. I had like a like, I'd have like a running out by row. I'd have like a gel pen, I'd have like a fountain pen, and I'd always switch over so it didn't look really suspicious. I'd be like, I'll do a couple of days in that blue Biro. I'll do one day in black because I could, like, oh, yeah, just first time I grabbed Yeah. No. There's a lot of strategic, sneaky planning going on. When back in those days,

Scott Benner 25:56
did you ever feel like I'm putting so much effort into pretending to do a good job? Maybe, maybe I could actually just do a good job. No,

Marnie 26:03
because at the same time I can, like, now looking back and everything I've learned from you and online, on Instagram and the Facebook posts and like, I just I knew nothing back then. Like, I didn't know anything like that. If I had a higher low number, I'd always be like, shrug. It is what it is. That's just diabetes. It's fine, like, I don't know what I've done wrong, whatever. So I just had, just didn't have the attitude to want to sit down and find out what was going wrong or how it could be better. And again, I think it was sort of the outwardly look like I've accepted it, but always in denial about it before I actually got control, and I did then accept it properly.

Scott Benner 26:48
What made that happen? Do you know?

Marnie 26:51
I think firstly was getting a CGM? So I got one. I think it was like second year after sort of COVID lockdowns, I think it was 2021 Well, that's pretty recently. Yeah, it was, to be fair, and I know it's quite late getting it because I think I can't remember if my mum got one before me or not. And yeah, because my mum lives sort of in a different borough, and when you're in different boroughs, the hospitals can have completely different sort of funding to have these things in place. So I think where she lives, she got a Dexcom. I was gonna Libra. I think she Libra, and then she was sort of showing me, and I thought, that's amazing. I'm gonna get in touch with my console. Since I did, ended up getting the Libra, which I've had since, I think it was just the ability to not be able to ignore things like I was doing before. So I'd see these sort of highs in between meals, or sort of going high overnight, then I'd come back in range before the morning, and I just thought, Oh my God. Like, is this what he's doing in between these four times a day, finger prick time, doing right. And I think it was just the knowledge of that's not right. It shouldn't be like this way, and I can do so much better. So I think that sort of got the ball, ball rolling, really. And then I saw and then that was the time where you couldn't go out, you couldn't do anything. So I just was Doom scrolling on social media for hours, and I remember seeing a girl, random girl that I follow, who's diabetic, she'd post about your podcast. And I'd never listened to podcasts before ever. And I thought, well, I've got all this spare time, and I like walking and running water so that I'll just get into it and start listening. And I was, I was hooked metal, and I've been, I've been listening to your podcast chronologically. So I'm on episode I think it's like 650 at the minute. So I refuse to do it out of order. So I've started episode one. I'm working my way through it in numerical order.

Scott Benner 28:55
How long have you been at that? I think 2021 you're only halfway through, I know, but they're gonna cure diabetes before you finish.

Marnie 29:04
Well, I feel like, you know when I see posts on your Facebook, great. I'm like, Whoa, spoilers. I'm not there yet. Advancements in medicine and things like that. I'm like, whoa, whoa, I'm not at that bit yet. Oh, that's so

Scott Benner 29:17
funny. You're like, Hey, I'm not gonna be there for like, three years. You can't tell me, yeah,

Marnie 29:23
not posted. I'm not there yet. That's

Scott Benner 29:25
so funny. Well, first of all, thank you. I appreciate you listening like this. So wait, this person you saw online, how did they motivate you again? You literally

Marnie 29:35
just shared about your podcast. Oh, and it was, I think it was really randomly, just some, some girl that went to university with basal, university. It was my sister. My sister was like, I'll give her a follow. She pulls back diabetes. Sometimes. I was like, oh, we'll do it. And I think she just shared, like, just a link to your podcast. And I was like, Oh, I'll check that out. I'll have a look.

Scott Benner 29:53
If you said you're not a podcast person, right? So just meaning you weren't listening to podcasts, did you know you weren't. Doing well, like, what were you looking for? Were you looking like? Why would you go listen? I guess

Marnie 30:03
I think I just wanted answers. So, like, something had happened. So I thought, have my breakfast. I can't count everything so precisely. And then I had my insulin, and then I'd be like, I've nailed this. I can't wait for this beautiful wine after breakfast, that's going to carry me through to lunch, and then my blood sugar just shoot up or drop, and I'd be like, I just can't understand what I'm doing wrong, and I wasn't getting answers from part of the hospital or anything, because it's very sort of cut and dry, stick to your carb ratios. Done. There is sort of opportunity to do week long courses here called Daphne. I don't know what it stands

Scott Benner 30:44
for. I know. Yeah, people bring up Daphne, by the way, you're in England, right? Yes, yeah. Why does your accent feel? I hope this isn't insulting. Why does it feel a little Scottish once in a while? Oh, really,

Marnie 30:56
you know what? I was just in America last week, and so many people said I found it Irish. Yeah, okay, yeah, a bit of a Celtic swang, I don't know. I think I'm very northern. It might be that maybe, yeah, I

Scott Benner 31:09
just, my brother in law is from Scotland and, like, when you just said, I don't know, when you just say, I don't know. Again, don't know you did it differently that time we poshed out. Like, oh, wait a second, a little too Adele, a little more. I just wasn't sure if you were, like, near a border or, like, something like that. But,

Marnie 31:31
oh no. Mike, slap bang, near Manchester. Well, slap

Scott Benner 31:34
bang is probably what I'm gonna call the episode. But, um, no,

Marnie 31:38
I don't been thinking that. But try not say anything too silly. In case you might write there's the title, thanks, die

Scott Benner 31:44
on route was in my head, because you're like, I didn't want to die on Route. Like, talking about being on the bus. And I'm like, that sounds too harsh. Yeah, that's a bit of morbid that one. But slap bang seems very like people would be like, Oh, what is this going to be about? And then this is gonna be thrilling. It's just me waffling. Well, you said, but before we started, you're like, you know, I'm gonna waffle. About You said, and I said, ironically, I just had a waffle. And I think you thought I meant I was just off, like, speaking, like, weirdly and backwards, yeah, but I had literally just eaten a waffle. I

Marnie 32:16
did not, yeah, that went right over my head.

Scott Benner 32:18
My son and his girlfriend are here today. It's a holiday here today. They were like, we'll make breakfast. And I came downstairs right before we recorded. And they're like, Wait, we made waffles. And I was like, okay. Then I came upstairs, and five seconds later, you're just saying waffle over and over again. I was like, Oh no. I just think you meant talking to me. I thought somebody was watching me. Yeah,

Marnie 32:35
oh no. Well, you charge a waffle anyway. Okay, so

Scott Benner 32:39
you saw someone online. You decide to try a podcast, it's great, and you were having trouble, like you said, you were making boluses then just thinking, like, here it comes, my perfect blood. But it just wasn't happening. So what did you figure out?

Marnie 32:50
No, it was just as a as a listen more and more things like, you know, like consider fat and protein and exercise, and just everything you speak on, really, on the podcast, that is a variable. And I just, I'd never been taught that, and I started sort of listening more and more and experimenting and messing them out with my doses. And just sort of slowly, I'd start seeing those beautiful, smooth lines that I'd always wanted, or I could sort of take insulin and just be so 100% confident on what where I'd be sat three four hours later or overnight. Like my overnights were ridiculous. Like I could be getting a screaming high line like two in the morning or low all night, and I just could not figure out twice as me so as I was listening, sort of putting things into practice, I was like, Oh my God. Like, it can be doable. It is doable because I kind of just accepted, like, Oh, this is just how it's going to be for the rest of my life. Like I think off the back of that as well, my eyes screened, and I started getting background retinol in one of my eyes, and that just absolutely terrified me, because me, up until that point, I was untouchable, and everything I was doing was enough to just keep me ticking over, and it was sort of that, and I just thought, Oh, my God, I need to look after myself. Because that was, I'd say that was two years ago, and that's only 11 years having diabetes, and I'm already sort of getting things going wrong, so I just thought, I need to get my

Scott Benner 34:26
together. Basically, I have a bunch of questions around this, but what it feel like when you started getting results that you expected? Was it fun? Almost,

Marnie 34:35
yeah, it was almost like, like, winning a game. Almost, I was like, oh my god yes, and I'd see a great number, and it's like, I'm just winning at playing the game with diabetes. Like, I was like, Oh, look at this amazing score I've got

Scott Benner 34:46
today. So then the question is, is, what did it feel like when it was going wrong? Ah, just,

Marnie 34:50
just like, I would always, I'd be very harsh on myself that it was going wrong, and I'd always be like, You didn't need that extra piece of toast. The breakfast that you didn't bowl us long enough for. And I was very sort of, I think it was just re learning things that I just need to focus more on and not ignore, like just I'd always thought I'd be told by if you're going to go off an exercise, be a bit higher and listening to you and learning things. I realized that it doesn't have to be that way. I can have a beautiful, smooth line and do exercise and eat a massive carby breakfast. It doesn't have to be sort of one or the other. Yeah,

Scott Benner 35:30
that's wonderful. I guess you never really knew about your mom's management, right? She didn't share it with you. You didn't share yours with her.

Marnie 35:38
Not so much. No, obviously she had. She had to talk a big part in helping me dose for things initially. Thing is, when I got diagnosed, I was given, I was put on pen straight away, and my mum was still on pig insulin, so she'd have to mix up two vials herself in a syringe, really. Yeah, yeah. So that, that was 13 years ago, and I think again, wait, wait,

Scott Benner 36:01
13 years ago. I gotta stop you. 13 years ago, your mom was still using beef and pork insulin. Yeah,

Marnie 36:07
she was, yeah, yeah. She'd have the two virals that she had to mix up. What the heck I know? And again, I think because she'd seen me go faster and get these pens, she'd gone straight back to her consultant and been

Scott Benner 36:18
like, where are my pens? Yeah. How come no one mentioned this right from her

Marnie 36:22
point of view, seeing what I was getting and the glucose meters I was getting and the pens, she then went back and got put on pens as well straight I think it was straight away. It might have been a bit of a wait for her, but yeah, so she sort of off the back of that. Got something else out of it as well. With me being diagnosed, I've

Scott Benner 36:39
never heard anybody using it that recently,

Marnie 36:43
really, yeah, she Yeah. She was literally using it even sort of past the diagnosis, till she got thought about 10.

Scott Benner 36:50
Well, I mean, if 13 years ago is is 2010 is that right? Yeah, yeah. And your mom was diagnosed in the 70s, yeah, yeah. Did they forget about her? Or was she, were they would was she not going to a doc? Maybe she was going to a time machine to go to her doctor, not a car? No,

Marnie 37:07
I'm not sure. I don't know whether it was maybe she was just comfortable again. This is something about maybe she was just comfortable with doing it, but then saw how easy it was, you know, just having pens and screws

Scott Benner 37:19
like that's, are you sure about this? Yeah, probably 100%

Marnie 37:23
watch me be absolutely telling lies, though you'll be like, I never did that. No, I'm she was 100% on Baal insulin with the Yeah,

Scott Benner 37:31
talking, was it regular in mph? Maybe? Oh,

Marnie 37:35
I don't know. No, I always remember saying it was Park insulin that she was on. Let me say

Scott Benner 37:40
this, even if it was regular mph, still 13 years ago, right, right, yeah, oh, that's goodness. So she sees you, she's like, Hey, apparently there's better stuff nobody told me about. I think

Marnie 37:50
so, yeah, just like, Oh, that looks, that looks a lot easier than shaking up some vials and stuff. Is

Scott Benner 37:56
it possible she got in one of those Harry Potter cars, went back in time, and that's when she went to the doctor, because you do have the steering wheel on the right. Wheel on the wrong side. So we do, yeah, I don't know how they work. I

Marnie 38:07
don't know it's possible, but yeah, she was, yeah, but she got on pens quite quickly. I think after Okay, see me get pens, yeah, okay, all right. All sorted out on the end.

Scott Benner 38:14
Then okay. Now fast forward to a couple of years ago, yeah. And you're like, suddenly, like, putting it in someone like, watch this. Watch me not spike. Watch me go walk without getting low. Do you go tell her?

Marnie 38:24
Yeah, yeah. To be so we've had a few conversations in pure because I would, like, I just wouldn't bring it up before, because I knew I was doing badly, and I didn't want questions to get turned back round to me and be like, how are you doing? And then I have to go look at my amazing blood sugar log. That's all fiction. So just one of those where I just thought, if we don't, if I don't bring it up, no one's gonna ask me too much about it. So off the back of that, since we have, sort of, I did sort of say, Oh, I've started listening to this. And have you ever thought about what you're eating, and, like, how things are digested, and fat and protein and all this. And she was like, Oh my gosh, yeah. But she's, I think she's sort of started doing her own research as well. So she's sort of very susceptible to, she walks a lot, like, she does a lot of exercise. And because she exercises so much. She does have quite a few sort of, like, low blood sugar sort of experiences, yeah. And then I think she has asked both MDI and she sort of gone and asked about a pump, because then she can sort of microdose herself with basal or shut it off when she's walking at the minute, she's just, yeah. But again, it's kind of one of those where, over here it's, I think she got, you need really good control to get a pump, which is what she was told. But then her argument is, but I want a pump to get the really good control. Because at the minute, it's just a lot of high pose of exercise and things like that. So. It's just one of those where you've really got to justify asking for a pump, and there's always a lot of pushback on it, really. But yeah, we've, we've had conversations since about, sort of, how's it going, or this is what I've started doing. Have you considered this as well? So yeah, we talk more about it now. Definitely

Scott Benner 40:18
very nice. Your note says that you want to talk about, like, anxiety and having panic attacks, being afraid of being judged. Can I hear about that? Yes.

Marnie 40:27
So, yes. So 2023, was the year of the panic attack. For me, a year

Scott Benner 40:34
set of the Chinese calendar I'm not aware of, oh god.

Marnie 40:38
Definitely not. Basically. So just for a bit of context, I have never had a stomach bug since I got diagnosed, which is bizarre, because I used to work in a primary school and in the office, so any sickly child got sent my way, and I've been thrown up on a million times. If I had a pound for every time been thrown up on, I'd be a millionaire. Yeah, and I just never had experienced a stomach bug ever. And it was my it was sort of a first birthday party, and we went and everyone got deadly, deadly sick off the back of it, like really bad vomiting bug. And I remember sort of getting up the day after the party, and I was like, Oh, Jesus, I can't get my blood sugar at all. And I was just eating and eating, went out for a nice breakfast, and I was like, I want to be really conservative with my insulin, with this because I just maybe it was just all like drinking the night before at this party. And I was like, Wow, just be conservative. I won't do too much. I just remember all day we're driving back home, and I was like, Oh, I just feel a bit feel a bit rough now, and my blood sugars are still tanking. And then got back home, back and my mom dropped me off. I was like, like, the flood gates opened. I was just violently unwell. But as I was I was like, my boyfriend was home, and I was like, Oh my God. Like, I'm actually getting really worried now, because I was just chugging juice after juice, and this is thing. I hadn't got this bit on your podcast yet, so I didn't know about so I was like, I got that part yet. So I was just like, Oh my God. Like, I think, I think we might need to go to hospital, because I'm starting to panic a bit now. So I went to hospital, which was an absolute waste of time. So I had drank about five juice boxes at this point, and then proceeded to throw them all up. And I was getting a bit worried, and I tried calling the we've got, like a non emergency number over here. So instead of calling like 999 you call a different number, and they put you through sort of non emergency, but you still get to meet someone straight away. And I was kind of like, can I have glucagon for this? Because I think I had heard Inklings about microdosing glucagon, but they were just like, Nope, no, you can't. You only do it if you're unconscious, we can get you an ambulance, but it'll take about four hours. So I was like, Oh my gosh. So my boyfriend ended up driving me to sort of our sort of local emergency department, and I got seen, and they just gave me a handful of anti sickness pills and sent me on my way. I think I was borderline DKA when I went in, because I remember just driving home my boyfriend, I could not keep my eyes open, like I just felt drained, like my boyfriend was, like you your eyes were literally like rolling into the back of your head. You were that lethargic. So went home, managed to get myself sorted out. My mum, bless her. She then got hit with the same sickness bug the same evening, and she was admitted to hospital for two days on drips, and sort of when I'll speak to a couple days later that I think I should have been admitted as well, rather

Scott Benner 43:45
than just me a handful of pills and shooed me away.

Marnie 43:49
So thankfully, wasn't sick again after went to uni, and when she sort of picked my fingers like, Oh, you're 4.1 which I think is like 75 for you guys, she's like, No, you're fine. Bye. Here's your anti sickness pills. Enjoy. So, so that happened, and took me a bit of time to feel right again. I was like, All right, that's behind me now. That was grim, but we're back on track again. And then I went to another first birthday party in September, I know, was it November and the exact same thing. So I'd never had a sickness bug ever, and then two in one year. And this time, I was a bit more prepared. And I was like, I'm going to oh gosh, it was horrible. I didn't have anything. I had a pot of jam, and I was just rubbing it into my gums in between being sick. But it worked like a charm, and I made sure to keep drinking water when could SIPP in, and I knew that I needed to have insulin on top of that. So this time, managed to stay away from the hospital. Felt a bit more prepared, so managed to get through that as well. And I was I was less panicky that time, so I was like, what. Like, okay, surely this can't happen again anytime soon. So went through all that last year, and then I started the anxiety started creeping in. So if I had a beautiful day of blood sugars that were trending low, but not, not sort of going hypo, right, I'd start having this thought at the back of my mind, like it's gonna happen again. You go in low because you're going to be sick again later. And it's not the being sick that was scaring me. It was just how helpless I felt in both those instances. So just

Scott Benner 45:34
sitting there with your Winnie the Pooh jar, rubbing your gums, yeah, try not to, try not to get too low.

Marnie 45:42
Literally, pants on as well. When all this happened, until it was very Winnie the poo. I

Scott Benner 45:47
mean, you said jar of you said jam. I wish you would have said honey, but

Marnie 45:50
nevertheless, I know. Oh no, I did. I did have honey sachets as well. Just sort of, yeah, so yeah, it works.

Scott Benner 45:56
Before we dive into your anxiety about, like, oh my god, I'm gonna get sick. I'm gonna get low. I have like, I'm gonna forget to say this. So a while ago, you said, if I had a pound for every time a kid vomit on me, I'd be a millionaire. I thought, How come you measure a pound? But then you go to million. Like, why? Like, shouldn't you? And then I did the math, yeah, shouldn't you say if I had a pound for every time you get vomited on me, I'd have 446 Imperial tons. Oh, I see, yeah, no, sorry, no, but, I mean, why does, do you see what I'm guessing 100% I

Marnie 46:31
think it's just, it's the waffle thing over again, isn't it? But

Scott Benner 46:34
the term for a million dollars, in like, British, like parlance, is a million dollars.

Marnie 46:39
I would say, yeah, no, yeah. I could have called it quid instead. That would have been even more confusing.

Scott Benner 46:44
No, I would have, that would have made me think of Quidditch, and then that would have taken us down a whole horrible road thing. But it's interesting that it's like a pound is like, I know a pound is money for you, but it's a weight here. And then you go, and then when you go to a million, you go to wooden anyway, yeah?

Marnie 47:01
Like, yeah, the math scene, math thing, yeah, this don't make sense, is what I'm saying. Sorry, I'd be very rich. I should have said,

Scott Benner 47:11
I just wish you would have said, I'd have 446, Imperial tons. Yeah, imagine you'd have to do the reverse math. Though. I had to ask chat. GB thing. I was like, hey, figure this out real quick, because I wanted to keep listening to your story. I didn't want to be the one doing the math.

Marnie 47:25
Oh no, yeah, just I'd be very rich. So even if

Scott Benner 47:29
you had, like, a great day, yeah, you started to go back to that place of like, I'm going to get sick. My blood sugar is going to be low. I'd be sitting around helpless. Now you're back on the bus again.

Marnie 47:38
Yeah, yeah. And it was like, it would happen every now and then, and then I do this thing where I'd be like, I'll just quickly drink half a juice just to check, just to check that things are digesting as they should be, and I'm not going to go high and I'm not going to go low and be sick. So I got into this really bad pattern of I'd have really nice grass, and I just couldn't rationalize in my head that I'd put in the work to have the nice grass, because this anxiety was just clouding everything. So I knew that a dose for breakfast personally, and factoring protein and all that stuff, but the anxious thoughts were going, No, you didn't you don't know that you're going low because you're going to be sick again and you're going to be sick again, and you're going to be in that helpless position again where you need help and you're in that horrible place started sort of stacking up, and it just got worse and worse. And I was at work whenever my first panic attack. And again, I'd had a day where I'd had a new I'd tried a new breakfast. I didn't have any sort of nutritional information about it, so I guesstimated, and I've nailed it, but I then was doubting the fact that I didn't have nutritional information. Like, how can you have nailed it? Like, you've completely guessed and you've got it right? No, you haven't got it right. You're going to be sick later because you've got low, like, personal, lovely, low blood sugar. Now, were

Scott Benner 48:58
you having compulsive thoughts about anything else? No, no,

Marnie 49:00
that's yeah, it's just not in my nature. Yeah, surely this, I just got so fixated on it, and to the point where then I was in work, and I've had breakfast and I was drinking a juice, and I thought that juice will sort me out. I'll have done my testing where I'm like, drink the whole juice, even though, you know it's going to send you high, and it didn't. So then again, the anxiety was building. I was like, Oh my gosh. You thought that was going to happen, but the low blood sugar is still that, and they weren't even really low. They were just sort of nicely, sort of kicking my LOW Alert, yeah. And then I went and had lunch. And again, a lunch had not had before, no nutritional information. And I ate that, and the same thing happened again, where I just sort of guessed, and the guest very well, but my brain was saying, You've not, you've not nailed it. This is the low blood sugar because you're going to be sick later. And I remember just sort of being sat at my desk, and I thought, Oh my God. Like I breathe, the room's closing in, and I just, like, ran off to the toilet. Just had a full on. So. Lot of meltdown. Ended up having to sort of bring my manager and be like, I need to go home. Basically, like, I just need to be somewhere safe. Like, not because I live sort of an hour's drive away from work, and all I could think of was like, I just need to get home and be somewhere where someone can keep telling me, someone knows what's going on. Like, my boyfriend was at home, and it was just like, so that was first time that happened. And then I had another time where my boyfriend was on holiday, and I started sort of getting anxious the week before, I was going, like, you're gonna be all on your own if it happens, like, if you if you get a stomach bug and you're low, no one's there to help you. And I just got so anxious, to the point where it got on his plane and gone, and I just couldn't eat because my stomach was in knots. I was just checking my blood sugars all the time. I was just thinking, Oh, who's most likely was pick up the phone at two in the morning if I do stop being sick and I need help and I need driving somewhere. And it just became this horrible, like overshadowing thing in my life that just Yeah, thoughts you couldn't

Scott Benner 51:03
stop having. So I want to ask you how you got rid of them, if or if you did. But first, I want to point out that you've said in the nicest way, like the dirtiest double entendre thing that anyone's ever said on the podcast. You said tickling my low alerts.

Marnie 51:21
Oh no, I know I didn't say it, therefore I could have thought of a better one. I just thought. I thought it was just a nice way of putting it. Was

Scott Benner 51:28
a nice way of putting it. I was like, oh my god, somebody heard that wrong. Oh, it sounds like a terrible child blind or something. I'm too embarrassed to tell you what I just did.

Marnie 51:38
Oh, I'm gonna need to know now.

Scott Benner 51:41
Oh, my God, you don't have to No, it's just, Oh, you don't have to be a lot. I gave Hold on. It's just, it's so stupid. I gave my chameleon this kind of worm that he doesn't seem to love, but I put it in there to see if he would like it. And I left his doors are open right now because I want him to have some air. Yeah, and the worm, just like, went all the way to the bottom of the cage, then crawled out of the cage, fell on the floor, and was walking across the carpet. And I thought, I'll just get that when I'm done. And then I thought, what if it goes somewhere and I can't find it? I'm like, let me just go get it now. Anyway, I'm just embarrassed because I have a chameleon and I'm an adult, but he's great. I love it. Do you still feel that way? And if not, how did you get past it? No,

Marnie 52:25
I feel so much better now about it. And I did start. I did start going down the route of, I think I need a therapist. Really helped me with this. It just felt all so all consuming. And I did sort of have like a little like taster session. And she was like, this is what we'll work through stuff like this. And I thought, oh, yeah, I think I should probably give this a go. And I was like, I'm going on holiday. Let you know when I'm back. And I just had, like, the simplest conversation ever with my mum. And and we were sort of visiting family and, and again, it's, this is another sort of side part tangent to the whole, like, anxiety thing. It made me really wary of hanging out with kids, and, like a lot of kids myself, but like, I've got a few sort of younger sort of family members, and it was getting to the point where I'd be really sort of like wary about, like, Oh, don't get too close, just in case they're ill and then they make me ill. So we'd sort of gone visiting my sister and her little girl. I was just saying to my mum, like, did you ever get really scared after what happened to us both last year? Like, is it not sort of set you back or anything? She just looked through and she was like, no, because we're both here, and why would you like that stop you living your life? And that's all it took. Just three weeks ago. Won't be the worst thing that's ever happened. It hasn't been the worst thing that's ever happened to you, and we're both here, and you can't let let that stuff stop you living your life. And it was almost like the simplest thing ever, and I just hadn't thought of it like that.

Scott Benner 54:02
Your mom's like, way worse crap is gonna happen. Don't worry.

Marnie 54:06
I just, like, I knew what she meant. And it was like, wow, yeah, you're right. Actually, that's all it took, really. I think, like, I follow a few sort of people on Instagram who've got diabetes, and a few of them would post about the same thing. I think it was just the whole, oh, this has happened to other people, and they're fine. And yeah, it might happen to me again. It probably will at some point in life. And my mom was like, but you know how to handle it, yeah? And I was like, oh, yeah, it's just that easy. Why didn't I think of this six months ago, and I was panicking all the time. Do you

Scott Benner 54:41
have glucagon in your house? I do, yeah, yeah.

Marnie 54:45
I've got a big stash of it. Now, after the vomiting,

Scott Benner 54:48
we just moved Arden into a different college situation, yeah. And we were like, she and I left her room to go downstairs to get some more stuff to bring upstairs, and we were in the elevator. By ourselves. And I was like, hey, in case I haven't said this recently, I'm just gonna say this. And she goes, okay. I said, um, you can give yourself glucagon. It's not just for when you're having a seizure. And I was like, but if you find yourself in a situation when you're like, Oh God no, I'm not gonna stop this. I was like, there's it's okay. And she was like, I know. And I was like, all right. And I just, I only brought it up because she's in a setting now where she's in a multiple room, so she's by herself in a bedroom, yeah, but in an apartment with multiple bedrooms, but everyone's doors lock when they close them, oh, I save i Okay. So in her last setting, like her, her roommates could have walked into her room if they wanted

Marnie 55:44
to, yeah, yeah, yeah, yeah, she needed help.

Scott Benner 55:47
And she was like, Okay. And I was like, All right, just don't forget that part. And she's like, Okay. And then that was sort of the meanwhile, like, lows are very infrequent for Arden, yeah, but still, you don't know, right?

Marnie 55:58
You know, it's just better known, isn't it? Just yeah, just double checking

Scott Benner 56:03
it's never happened once. When I thought, Oh, I bet you, Arden's gonna get really low today.

Marnie 56:07
Like, yeah, you know exactly, yeah, it's always the uh, the curveball lows

Scott Benner 56:13
just happened. But so your mom just, what do you just gave you some extra perspective. You think, yeah,

Marnie 56:18
I think it was just, I think it was, I just felt very alone with it, because obviously I'd speak to my friends and they could sympathize and speak to family, they could sympathize, but I just it was almost that feeling of pure like helplessness, like I'm doing everything I've been taught to do to fix low blood sugar, and it's not working. And it just felt like that utter lack of control, yeah, was just spiraling me out. And just for the fact it came and I had spoke to mom, since we were both fail, and she'd sort of touched on, like, yeah, no, just carry on. It was just that moment she was like, You can't let you can't let this just like, consume Yeah. I just thought, oh my gosh, yeah. So Right.

Scott Benner 56:58
Good for you, well, good for her to to give you some good advice.

Marnie 57:02
Definitely, it's just like I needed someone else in the same situation to say it to me, just like you can't put your life on hold because you're this scared.

Scott Benner 57:11
Yeah, wouldn't it be crazy if, like, three years from now, you got to an episode of the podcast that said that, and you're like, oh, no, I would

Marnie 57:20
have found that I had actually posted in the Facebook group about it, but I know it's very specific niche. And again, I think I've done a bit of a waffle we post. Because I was like, Oh, I don't like, Has anyone experienced it? And to be fair, a few people had sent me episodes to listen to just about, you know, like fear of hypos and hypo and dieting stuff that that did help with the just the functional stuff,

Scott Benner 57:45
but not the psychological part of it, yeah.

Marnie 57:48
I think it was more just how specific the things that I prompted to hear was, yeah. Did

Scott Benner 57:55
you ever hear the episode called worry is a waste of imagination?

Marnie 57:58
Is it pre episode 656, let

Scott Benner 58:03
me find out. That's interesting question. It might

Marnie 58:04
be because I've actually that rings a bell that title it

Scott Benner 58:08
just it always occurs to me, I don't know where I heard that first worries, a waste of imagination, is episode one, 156, is just lovely. Yeah, just the idea that when you're worried about something. You are just making up a scenario in your head and deciding to treat it like it's actually going to happen. And now yours is a little more specific, because this has happened to you in the past, but, but sort of, I mean, it's not the same, but it is the same. And, you know, so you I can see that, though, get that in your head, but that's not really the crux of the problem. The crux of the problem is that, and I'm guessing, just from listening to you, it's that spot where your effort won't overwhelm the problem, and there's a finite end to it, because you could have a seizure. And what do you do? Like, right? Like, that's, that's where the fear is right? There is that? Right? Yeah,

Marnie 59:02
yeah. 100% Yeah. It's just the lack of contour. Like you said, everything you've ever been taught to fix that is not fixing it. And then the panic sets in because you're like, Oh no, this usually works. Like, Oh dear, this isn't going the way I wanted it to go all planned,

Scott Benner 59:17
and I don't have unlimited time here. No, that's fine, yeah, right, right. You're like, there is more, like, I'm gonna run out of time before I get this fixed.

Marnie 59:27
Oh, yeah, yeah, yeah. Almost like it's that sense of sort of impending do, like you sort of get an inkling of that anyway when you start having a Hypo. Just thought of the Doom feeling, but it's nice. Just that times a million,

Scott Benner 59:38
anybody who's had, like, awake, conscious, like, seizures, low blood sugar incidences that they've talked about on the podcast, they all mentioned this moment where they fit their last thought is, up here, I can't see Yeah, like, yeah, it's coming, and I can't stop

Marnie 59:54
it right now. Yeah, this is the clock now. Bye,

Scott Benner 59:57
yeah. Well, that's not imagination. That's a real worry. And, and I think we don't talk about that very often in the space, like in general, and I tried to bring it up periodically. I, you know, I've, you'll hear me in a couple of years, tell a story about being it, um, about being at this event where I was speaking in front of, like, probably three, 400 people, if I remember correctly, yeah, and a lot of them were newly diagnosed adults, or were the spouses of those adults. And I just brought up, like, hey, you know why it's so important of glucagon around. And when I started, people were like, why? What is that? And I'm like, wait, what you know? And then, as you explain it to them, like you could see, they were like, Whoa. No one mentioned that. Yeah,

Marnie 1:00:41
that's that's the thing, yeah, because I've had glucagon from the get go, ever since diagnosis. But I don't touch wood. I've never had to use it. I have had two seizures before, but I've never How did you get out of them? I don't know how we got fixed. Actually,

Scott Benner 1:00:57
were you by yourself?

Marnie 1:00:59
The first one, I wasn't and my friend poured a whole bottle of full sugar lime cordial all over my face. So when I woke up upside down my bed later on that day, I stunk of limes. And then the second time, I think I was on my own, and I think I think I knew it was I knew it was going to happen. So this was after a night of drinking and being silly. So I drank a whole bottle saved, and I think just the timing was I had a seizure, and then I started coming back out of it the other side. But I think I just took myself to bed and just, yeah, wow, yeah, I know funny.

Scott Benner 1:01:35
That didn't make you worried. No, exactly. Oh, yeah, but you're older now. Just so silly and

Marnie 1:01:41
careful. Yeah, you just don't care. Yeah, now I'm old and just worry about everything.

Scott Benner 1:01:46
Yeah, when you're 17, you're like, I

Marnie 1:01:51
almost died. My sister came upstairs and she was like, what has gone on downstairs? Like, she's like, there's blue seed everywhere, like a big stain on the rug. And I was like, yeah, no, I think, think might have had a seizure last night, but I was like, fine. Now, Director,

Scott Benner 1:02:05
yeah, what are we doing now, right and now and now, you're like, today, I want to live right so, like,

Marnie 1:02:11
if I can stave that off, I will do Yeah, just It's mad though, just the attitude shift of being a very, very silly 1718, year old and for now, yeah,

Scott Benner 1:02:22
think that's just maturity or time, or is there something that happened to you that made you think, like, I should value my life more? Yeah,

Marnie 1:02:30
I think it's just the whole and I think this is for everyone really. Well, I don't know if everyone feels like this, but I think just, you just feel so untouchable when you're young, like, you just think, like, bad things happen to older people, or it's older people that get ill or pass away and things like that. And I just think you just feel like you're so untouchable that you can get away with all this stuff. And then as you get a bit older, yeah, and you just realize that it's not true, like you need to really look after yourself. You need to you are in charge of yourself, and it's only you could that can be sort of putting that effort in and making making sure that you're gonna have a long and healthy life.

Scott Benner 1:03:10
Wait till you get older and you wake up injured that I'll tell you, I'm not kidding, like you wake up from being asleep and you're like, Oh, I hurt myself while sleeping. Oh no. That's when you realize, oh, I'm old.

Marnie 1:03:23
You know what? I think that's dying already. I've got a recurring, like, nighttime neck injury,

Scott Benner 1:03:30
recurring nighttime neck injury, ah, yeah, we had to move hard and out of an apartment very quickly. So we, like, went on this 700 mile drive, got there, like, ate food and went to sleep and then got up, like at five in the morning, packed the car, then drove 700 miles home again. Is horrifying, but the part of it that is relevant to this is that we got there and I realized she had brought a friend with her. You know, she had a bed that she could sleep in, but her friend needed a place to sleep, too, and there was no other furniture because she hadn't fully moved into this space yet. No. So I just, I'm like, this will sound pejorative to some people, but I think it's just accurate. She's a girl, so she has a lot of pillows. So I said, let's just lay these pillows out in the shape of a mattress, and I'll tuck a sheet around them to hold them kind of tight, and I'll lay, I'll sleep on the floor. It's like, no big deal. And they're like, no, no, no, no. And I'm like, Well, where do you like this? Is it like? I make you guys say, Yeah, Holy Christ for a week, my neck.

Marnie 1:04:36
I'm not surprised. You've always look at like a makeshift bed like that. And you think that'll be fine. And then you sort of get on it and you you're like, Oh no, I'm not sleeping tonight at all. Listen,

Scott Benner 1:04:45
this is just for one person, but the editor, the guy who edits the show, he just went on, like this, like bike ride, where he he camped out in this, like, small tent that he kept. And I text him, bro, like, are you all right? Did you sleep in that? I. For choice. He chose this. I said to him too. I was like, you're old, you know, you got to be careful. Oh, yeah,

Marnie 1:05:05
no, my camping days behind me. 100%

Scott Benner 1:05:09
so let me ask you. So then this last bit here that I was going to ask you about is like, fear of judgment. Are you being judged, or you're afraid you're being judged and judged about what? No,

Marnie 1:05:19
I guess it was, this is sort of from when I first got diagnosed. It was, again, sort of the thing of not accepting it properly and outwardly. You could ask some of my friends, and they'd have forgotten I've got diabetes, because I just hide it. And it'd be things like, we'd sort of be sat in school cafeteria, and everyone's got the lunch. And I would, literally, sometimes I'd get my insulin pen out to do an injection, and people like, Oh, you're doing that here. Like, what? What's all that about? What are you doing? I just got into this sort of mentality of, I'll take myself off to the toilet, I'll do my insulin toilet away from everyone. And it was, sort of became a pattern then of me just like worrying that other people are going to be looking and I suppose judging me. I don't know what they'd be judging me for, but just sort of like it just felt very like all eyes were on me every time, and probably no one was looking at me. But I just had this feeling of, hey, pull in some pen out. Everyone's looking at me. Everyone's looking at the needle, everyone's whispering, everyone's wondering what I'm doing. So I did, I did have that a lot, sort of coming out of my teenage years, early 20s, where, again, I just secretly inject, had secretly decimal blood sugars. Or I would ignore it, because it didn't want people seeing me using all my equipment.

Scott Benner 1:06:42
So it was kind of self imposed. You just were Oh yeah,

Marnie 1:06:44
fully Yeah. Just a narrative in my head that yeah, I've just created. And again, I think it was just trying to feel a bit like normal. I thought of normal, right word, but just

Scott Benner 1:06:55
like everyone else, really just didn't want people looking at you.

Marnie 1:06:59
Yeah, I hate attention. I hate attention. So I was like, if one person looks at me, if that's it game over, I'm gonna be in the toilet eating my lunch, basically. But yeah, it was just Yeah, it was, it was something I had created in my head, this narrative that, oh, people are judging you, but really they weren't. They probably weren't asking questions about it and be interested in it, but I just hid it from everyone, like, hid it, didn't hide it from my friends, but just I wouldn't give too much away about it, really okay. And now you don't feel that way any longer. Oh no, I will make eye contact with someone on the bus and inject,

Scott Benner 1:07:38
like dead in the eye. It's happening. Watch me do it

Marnie 1:07:40
literally, if I see you looking I will hold the icon so you look away. Yes, I'm just, I'm not phased about stuff like that at all anymore, and I've got my Libra as well. So more than happy having that out and about. I love it when people come to me and ask me about it. I went to holidays Vegas last week, and I was literally, like, nudging my wife and like, Hey, does his next come over? There's no Omnipod over there. And I'm like, oh, and just having, like, really nice chats for people that are just what you sent to. And you'd be like, Oh, you too. And then you'd have just, like, a really nice conversation. I just, yeah, I love showing it off, basically now, like, just and then spotting, like, diabetes in the wild and going speaking to them

Scott Benner 1:08:21
I just saw in that post we talked about earlier today. Yeah, this person said I was just on a flight. I met two men, both had type one. This person has a like, a child with type one. They said that we had the best conversation, but then you came up. And I was like, Oh, I came up. Oh, finally, yeah, finally, the conversations going the way it should, but they talked for a while. They all knew the podcast like three strangers on an airplane. I was like, That's lovely. It

Marnie 1:08:49
is that sense of community, though. Because, like I said, I went to Vegas last week and I did a post in your Facebook group, just sort of being like, I've never been to America before. What should I be wary of, like, what a good snacks. I basically wanted to immerse myself in going full America. And I was like, what a really good low snacks I can go and buy loads of. And it actually made me a bit emotional, because it's just the outpouring of people being so helpful, but just wishing me to have, like, the best holiday and check out these amazing recommendations. And I ended saving loads on the phone. I just thought, how nice that people take, like, five minutes out the day to just be so helpful and want to help. And that I was like, I was just telling my boyfriend about it. I was like, it just, it just feels like such nice space where everyone's got each other's back and everyone's just so willing to help. It's a

Scott Benner 1:09:42
mass example of this experience you had with your mom. Honestly, you're just like, Oh, I understand their situation now and then you can just have more space for it. Or, you know, it's not that you're not empathetic for other people in general, but like, you just really don't know the depth of it until and. Every person that saw that thought, I know how this girl feels like she's gonna get on a plane and fly to a completely different place and she has diabetes. Yeah, it was just

Marnie 1:10:07
really nice, because everyone's just like, oh, go here. Try this. You'll have the best time. Have a great holiday. And I just thought, oh, like, just all these strangers just being so lovely. It was, it was just really, I just wore

Scott Benner 1:10:19
my heart Beautiful. All right, we're gonna stop there. I might call this episode slap bang, I don't know. Well, yeah, you should, because the bus came up a lot, by the way. Yeah,

Marnie 1:10:31
I didn't learn to drive until three years ago. That's probably why. Okay, I've been in a lot of busses in my time. Yeah.

Scott Benner 1:10:38
I mean, have you ever seen a shrunken head driving the bus, or that doesn't really happen, right?

Marnie 1:10:42
No, fortunately not, not in real life, okay, if you say so, still holding out hope, though, one day, yeah, what

Scott Benner 1:10:50
do you let me ask you before, before I let you go like you're coming here. What are you coming for? Just like, holiday or something specific.

Marnie 1:10:56
We actually came for wedding. Yeah? Holiday, Flash, wedding. Oh, nice.

Scott Benner 1:11:00
Oh, did you have a good time? Did you find us to be horrible? What was your situation? No, it's

Marnie 1:11:06
amazing. I loved it. It was it was just crazy. It felt like a bit of a fever dream Vegas, just like I couldn't quite grasp that it was real life, but it was such a good holiday. It was unreal.

Scott Benner 1:11:18
Yeah, I've never been there, but New York has that same feeling when you stand in the middle of Manhattan. Have you

Marnie 1:11:24
been to New York ever? No, no, I think that's a that's the next one when we sort of venture back over to America, yeah, open

Scott Benner 1:11:31
up your field of vision, and you're like, is this all really here? Like, who put this here? You know,

Marnie 1:11:36
there's just stuff going on all the time. I loved it. Yeah? It was so good. Good.

Scott Benner 1:11:40
Excellent. All right. Well, I appreciate this very much. Thank you for doing this with me. Can you hold on one second for me? Yeah, of course. Thank you.

Thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox a huge thanks to us, med for sponsoring this episode of the juice box podcast. Don't forget us, med.com/juice box. This is where we get our diabetes supplies from. You can as well. Use the link or call 888-721-1514, use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us. Med, 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. Are you starting to see patterns but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 the episode you just heard was professionally edited by wrong way. Recording, wrong way recording.com, you.

Please support the sponsors

Donate

Scott Benner 2/19/25 Scott Benner 2/19/25

#1438 Pretzel

Julia, a 26-year-old with T1D, Hydrocephalus, ADHD, Autism, and OCD, discusses life, insulin management, job struggles, and her alert dog.

+ Click for EPISODE TRANSCRIPT

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

Speaker 1 0:15
Hi, I'm Julia. I'm 26 years old, and I have been type one diabetic since November of 2004

Scott Benner 0:26
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. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. 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 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/juicebox 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, T 1d exchange.org/juice, box. This episode of the juice box podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juice, box. The episode you're listening to is sponsored by us. Med, us. Med.com/juice, box, or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med, Hi,

Julia 2:00
I'm Julia. I'm 26 years old, and I have been type one diabetic since November of 2004 2004

Scott Benner 2:13
1424, that's 20 years so you're you were six when you were diagnosed? Yes, wow. Gosh. That feel like a long time? Or how does it feel? I

Speaker 1 2:23
don't remember, yeah, I don't remember life before I was diagnosed. Yeah,

Scott Benner 2:29
you don't have a before and after. No, do you think that's a good thing? Or do you does that make you sad? Sometimes,

Speaker 1 2:36
I guess it's a good thing. Like, I didn't feel like I had to, like, stop eating something. And I mean, pretty much now with the insulin pumps, like I eat every anything in moderation,

Scott Benner 2:47
so you don't feel restricted, I guess is the question,

Speaker 1 2:51
no, like, I know, like before I was on insulin pump, like, you know, but like the technology, like the Dexcom, like I did restrict my eating a little more, but like, you know now that I know my blood sugar, like 24/7 I'm almost a little bit like, bad about eating things sometimes, like, I'll eat things that maybe I wouldn't have eaten, like, for the sensors and stuff like, explain, tell me how I have ice cream, like every day, dessert Time at dinner after dinner. Are you telling

Scott Benner 3:22
me that because you can see your blood sugars now and you're able to manage it well, that you eat more ice cream than you would have back when you were worried, like, oh, I don't know how this is gonna go. Probably, Oh, so you're saying, okay, okay, cool, yeah, all right. Well, that's interesting. And do you think that's been detrimental to you, or do you think that's been something that's opened your life up. I

Speaker 1 3:41
mean, my a, 1c is pretty good. It's like, think it was like 6.3 before, like, last time I go to my endocrinologist next week. So

Scott Benner 3:52
do you look at your variability, like, how up and down your blood sugars are? Do you look at your time and range, stuff like that?

Speaker 1 3:58
Yeah, yeah. I've actually found that gluco app shows a better time and range for some reason than the clarity app. Is

Scott Benner 4:06
it set at a different range? Like, is the clarity app could be? Yeah,

Speaker 1 4:11
it could be because, you know, I only have it for my doctor's sake. Because, like, I guess in order to download my data, they need the gluco app and the clarity app. And, like, never even touched any of the settings. I just I do what they say. So

Scott Benner 4:26
I was gonna say the the range, like, what's the range that you think of as your goal, and what range is on those apps?

Speaker 1 4:33
Well, I'd have to go to the apps to look at them. I don't remember off the top of my head.

Scott Benner 4:37
Well, where do you like to keep your blood sugar? Where are you most comfortable with

Speaker 1 4:42
it, like 70 and like, or no, like, some 70 is too low. Like, oh, here, here, I'll tell you this. Go ahead so, and this is something I was planning to bring up later in the conversation, but I have a diabetic alert dog, right? Okay, and her alert and. Numbers. Like, we had to train her to alert at a certain number. And she alerts at what, at 90 and 190 she'll, like, start alerting, like, a half hour, even before I'm there, like, so she's like, even ahead of the Dexcom,

Scott Benner 5:13
she can feel like, sense your rises and falls. You think,

Speaker 1 5:18
yes, yeah, I'm, like, not necessarily always aware of hyper or hypoglycemia. So like, you know, people say, Oh, why do you need a Dexcom? Or why do you need a diabetic alert dog if you have a Dexcom and, like, I say, well, sometimes she's more accurate. Like, there'll be days when my Dexcom, like, is, like, failing, and it's like 100 points off in range, right? You know, yeah,

Scott Benner 5:48
now I hear you. Let's Let's go. How long have you had the dog for? Like, what made you think, like, I really should get a diabetes alert dog? So

Speaker 1 5:55
actually, it was, I read the book, and I believe you had her on the podcast, Allen coach by Stephanie Shaheen, yeah, sure. And I found that one day at my local library, and I was like, Oh, this sounds amazing. What is this all about? So I checked it out from the library, and then, like, it took a while to convince my parents. At that point I was like, 17 or 18, I had enrolled in community college just because, like, you know, I didn't really want to go live in a dorm and not have,

Scott Benner 6:26
like, felt better to it felt better to live at home and commute. Yeah, okay, yeah, yeah, yeah. So tell me when you went to them about the dog, I imagine they can be expensive. So, yeah, what was their response? Well, they

Speaker 1 6:41
were like, let's think about it for a while. A couple years later, I met somebody through one of the local JD JDRF chapters who had one of these Diabetic Alert dogs, and my mom and I went to go meet her, just like to see what it was all about and like, what the dog was like, and if it was like, a sure thing. When we came home from that meeting, my mom's like, okay, yes, you can do that. Oh,

Scott Benner 7:08
wow, cool. They were able to help you get it all set up and pay for it and stuff like that. I did a GoFundMe, did you really, yeah, oh, that's crazy. And that worked. How much did it? How much did the dog

Speaker 1 7:18
cost? Am I allowed to, like, mention this specific organization, or no. I mean, if you want to Sure, okay, as I said, it was the same organization that Stephanie Shaheen, daughter el went through, and that's cares Inc, out of Concordia, Kansas, back when I got the dog in October of 2021 they charged $5,000 I think when Elle got her dog, they charged 25 or $3,500 and now I think they charge 7500 which is still a lot cheaper than, you know, diabetic alert dogs of America, which charges like 30,000 Yeah,

Scott Benner 7:57
so that's a lot. Hey, for $30,000 you could probably pay a guy to walk around behind you and just, like, just, yeah, yeah, you know, like, look at your CGM constantly, yeah. That seems like a lot of money for a dog, right? Well, that's nice. So your parents were able to help you. And then, how old were you when you got them? Or her, I'm sorry, which? What was the dog? A boy,

Speaker 1 8:15
girl, I should have started with that. Her name is pretzel. Ah, how old? How old were? You got pretzel? I was 23 okay,

Scott Benner 8:24
all right, few years

Speaker 1 8:26
I got her, like, right? I'd say the pandemic was still going on. But, like, it was October 2021, so, so it was, wasn't like lockdown time. It was just like, you know, people being cautious and like, now, you know, as an immunocompromised person, I try to be cautious about COVID myself, like I don't want to make this political and all that, which I don't think it should be political. But, you know,

Scott Benner 8:51
just try not to get sick, if you can. Right? I actually had COVID in

Speaker 1 8:55
January of 2023, and basically all I had was, like a post nasal drip, and, like, I tested negative within like, three days.

Scott Benner 9:06
Well, I was I got, when I got COVID, I was sick for a while, and it hit me pretty hard. I was vaccinated and everything, and I just got, like, it hit me hard. So, yeah, no, nobody wants to be sick. Do you have other issues, like, other medical issues. Oh yeah, I do. You're like, Oh yeah, definitely. Hold on.

Speaker 1 9:24
This is this thing I sometimes I post anonymously in that, in the in the Juicebox group, I mentioned these other disabilities and, like, you know, like, if I say this, they're gonna know, like, oh yeah, that's that person with these conditions. So it's interesting. I was born with a neurological condition called hydrocephalus, sure, which is water on on the brain. It's a build up of cerebral spinal fluid, and I had my first of several brain surgeries at three days old. Wow. Then when I was six, is when I got to that. Diagnosed with type one, but we believe I caught that. Well, I don't want to say caught it, but inherited it from my grandfather, who was type two, and my aunt, who's type one, she would actually be considered like adult diagnosis, because I think she was 29 when she got it. In the last couple years, they've, like, they've changed the terminology about type one, just being about children and stuff. I have an anxiety disorder, which I guess a lot of people have, but, you know, mine's kind of bad and and then, more recently, I was diagnosed with ADHD and autism.

Scott Benner 10:39
Okay. Oh, wow. So and do you have any long term impacts from the hydrocephaly? There's a lot that can come with it, right? You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works. And I picked it up. I was like, hello, and it was just the recording was like, US med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it, push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like, a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Us, med.com/juice, box. Or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new eyelet pump. Check them out now at us, med.com/juice, box. Or by calling 888721151, 887211514, there are links in the show notes of your podcast player and links at Juicebox podcast.com to us, med and to all the sponsors. The contour, next gen blood glucose meter is sponsoring this episode of The Juicebox Podcast, and it's entirely possible that it is less expensive in cash, then you're paying right now for your meter through your insurance company. That's right. If you go to my link, contour, next.com/juicebox, you're going to find links to Walmart, Amazon, Walgreens, CVS, Rite, aid, Kroger and Meyer. You could be paying more right now through your insurance for your test strips and meter, then you would pay through my link for the contour next gen and contour next test strips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now, even with your insurance, and I don't know what meter you have right now. I can't say that, but what I can say for sure is that the contour next gen meter is accurate. It is reliable, and it is the meter that we've been using for years. Contour next.com/juice box. And if you already have a contour meter and you're buying test strips, doing so through the Juicebox Podcast link will help to support the show.

Speaker 1 13:20
Yes, I actually have a head tick. So the cat my camera's not on, but if my camera was on, you would see my tick that I do, like uncontrollably. Is it pretty constant? Yeah, but I don't. The thing is, I don't know when I'm doing it. So I recently found out that Billy Eilish has Tourette's and she has a tick. So,

Scott Benner 13:46
I mean, I don't know, obviously a ton about hydrocephaly, but I know that it could kind of impact, like motor development, trying to remember what I know, like maybe vision and hearing stuff like that, or cognitive stuff. Yes, yeah.

Speaker 1 13:59
Like, I have strabismus, which is lazy eye, and that they said was from the hydrocephalus. Okay, I don't remember if it was your group or another group. I did remember talking to another parent of a person who had type one and hydrocephalus, because I was wondering if they were connected somehow. And I think, like, two parents commented saying, Oh, my kid has both.

Scott Benner 14:24
I see, yeah, you don't meet a lot of people that have it.

Unknown Speaker 14:29
No, they're the mix. Yeah.

Scott Benner 14:30
And what about how does the autism diagnosis come as an adult or as a child?

Speaker 1 14:35
Yeah, that actually came this past spring, spring 2024 How do you get

Scott Benner 14:42
to that, like, what's going on in your life, where you end up being in a situation where somebody's trying to diagnose you, like, what was happening that made you think, like, I need help or intervention or whatever.

Speaker 1 14:52
And this is where I said I didn't want to go into all my problems, because I post anonymously on the diabetes group. Blah.

Scott Benner 15:00
You don't have to say anything. You don't want to. Don't worry. Yeah, yeah,

Speaker 1 15:03
yeah. But, like, you know, like, quite frankly, I haven't been employable. And like, you know, I was wondering, is it me, is it my other disabilities? Is it just the fact that I'm saying I always I was, was on the on job applications, saying yes, because I didn't want to lie, but then I switched to prefer not to answer. And I'm like, well, is that just as bad? So

Scott Benner 15:28
you were applying for jobs and just not getting them, and you thought, like, Is this because I'm saying I have diabetes? Is it because I'm saying like, or are they seeing something about me that I don't realize? Is that the idea, yes, okay,

Speaker 1 15:42
I haven't done unemployment yet. I'm a little hesitant too, because, like, I don't, and this is gonna go into, like, sort of semi political thing, but I don't like how they limit the amount of money in your bank account. That just seems a little weird to me. I know there's other Hold on.

Scott Benner 15:59
I don't know what you mean. Who limits money in your bank account? I forget if it's

Speaker 1 16:02
SSI or SSDI, but one of them, you have to only have, like, 2000 or $3,000 in your bank account at a time. So

Scott Benner 16:11
you're receiving some sort of public assistance, and if you make too much money, they'll take it from you. Yes,

Speaker 1 16:16
and that's why I haven't joined SSI yet, but I've been at a job since July. Again, what kind

Scott Benner 16:23
of job do you feel like you would enjoy? Well, honestly,

Speaker 1 16:26
I go on your group and I say, what kind of jobs are hiring for people with who want to help people with diabetes but do not have a college degree? Because, like, that's the other thing. On an academic level, I couldn't get a college degree because, in addition to all my other disabilities, I have something called this calcula, which is basically math dyslexia. And I went to a state school or no, so sorry. First I went to community college, and they were like, well, we can't let you graduate with an Associates unless you pass the math classes. But I was going to tutoring like four days a week and still failing. So they were like, well, Here, try this state school and you might have better luck. So I got the neuropsych eval done with the state school, because it was a state school and rather large, the Disability Services place was not very good. They forgot my name multiple times, and they also lost my paperwork multiple times. And then when I got into the talking with them about math, they were like, well, there's a chance we can let you skip math, but there's a chance not. And at that point, vocational rehab was, like, Julia, you're, you're 2425 I don't exactly remember when, how well I was, but, like, you don't have much job experience. If I were you, like, I just kind of drop out and see what, what you can get for work. Because, like, with all my things, I was not, um, you

Scott Benner 18:02
weren't having a lot of success at school. And, yeah, yeah.

Speaker 1 18:06
And I was too overwhelmed to work part time at the same time, right?

Scott Benner 18:10
Yeah, I understand. And yeah, can I ask, like, when you, when you get looked at for the somebody's going to try to make a diagnosis for you, and they come back with an autism diagnosis? Do you know what it is that they saw that led to that diagnosis, and did do you agree with it? I didn't

Speaker 1 18:26
even consider it until, like, my therapist brought it up to me this past winter. I think I was in special ed K 12. I was around autistic people, but I didn't consider myself like them, and yes, I know that Autism is a spectrum. I also should clarify that I was mostly around autistic boys and like I don't want to say anything that's inaccurate, because I was only recently diagnosed, and I'm still trying to learn more about autism, but my understanding is that boys and girls present differently, and it's much harder to both diagnose both autism and ADHD in girls and women I see than boys and men. Well,

Scott Benner 19:13
it's a lot, because now you've got to, like, learn all about this, like, this new world that you're you're being told you fit into but you're not even certain if you do,

Speaker 1 19:22
yeah, thankfully, I have discovered some people commented on one of my posts one time and said, Well, there's an ADHD and T 1d group, and there's an autism with T 1d group. So I I joined those, and they're much smaller in stature them like your group, and I barely see any posts from them on my feed. But you know, it's also good to know that they're out

Scott Benner 19:47
there. Yeah, no, of course. Like, hopefully, if you really needed something and you posted, people would say it, you know, yeah, yeah, that would be nice. What makes you want to come on the podcast? Because

Speaker 1 19:58
anything i. Discovered, like, with the experiences I've gone through, like, I want to advocate for people like myself with diabetes and with other conditions. Like, I'm not saying, like, I'm going to say things accurately. Like, that's why I don't want to talk about autism too much, because, like, again, I'm still learning about autism. But like, I want to be a voice. I want to be like a, like, not like a guiding light, but like a,

Scott Benner 20:25
I understand what you like. Yeah, you would, you would like it if you were able to share your story, in case people like you have a similar story. Is that, right? Yeah, yeah. Eventually,

Speaker 1 20:34
I'm hoping to maybe get hired by a diabetes company of some sort, I don't know doing what, but like, I'd love to work for a company that, like, highlights people with diabetes, or works with people with diabetes or even people with disabilities. Like, before, I wanted to have a career in that. But like, you know now I'm seeing like, there's so much like miscommunication and like misrepresentation about people with disabilities that, like, I think it's important. So

Scott Benner 21:03
do you see yourself like working in the building or being like a social media, like influencer for them, or what is it you're imagining? Maybe

Speaker 1 21:12
part of both, because I'm really good at social media, as a lot of people my age are, but you know, it'd be, it'd be nice to like, work with, like a, like a, like an organization, and like, be employed by them, yeah, not just like a sponsored influence or

Scott Benner 21:28
something. Do you have any idea what you'd be, what you think you'd be good at? I'm

Speaker 1 21:32
very good at writing so like writing up posts for social media, or writing up blogs like,

Scott Benner 21:39
yeah, and have you reached out to companies or to organizations? I've,

Speaker 1 21:44
I've done it a little bit, but most of them are saying, Oh, well, just look at our the jobs we're hiring. And most of them are, like, not where I'm living, or like, they need to do in the office, like, 40 hours a week, and like, you couldn't do that, right? Is that right? Yeah, I'm just trying to work 20 hours right now. Like, I need to, like, get my like together, so to speak.

Scott Benner 22:09
Sorry. What devices do you wear? You have a Dexcom. I heard you say, what else?

Speaker 1 22:13
Yes, so I have a Dexcom, and I think I'm allowed to say that I'm in the Omnipod five, limited market release, which I guess by the time this airs will hopefully be out in full market

Scott Benner 22:29
I would imagine, yeah, I would imagine it would be so. So tell me a little bit like you're in the limited market release for what, for iPhone app, or for something else for

Speaker 1 22:37
the iPhone, yes, oh, wow, which means it's not compatible with the Dexcom g7 yet, because they like for the iPhone app. Okay, I guess they're rolling that out soon, because, like, you know, I get so sick of those two hour warm ups, like, I have a good diabetes week, and then I'll do the two hour warm up. And during that two hours, not knowing what my blood sugar is like, screw it up in those two hours. Tell me

Scott Benner 23:02
what happens in the in that gap. I

Speaker 1 23:04
know what it is, like, every other hours of the week, but like, those two hours, I don't know what it is. And, like, I don't know if it's anxiety and anxiety thing or, like, does your

Scott Benner 23:14
blood sugar start to go up? Do you start eating because you're afraid you're low and and how come you? Yeah, I

Speaker 1 23:19
think a little bit of all that. Yeah, do you test? I don't test as much as I should. I know I I sound like one of those people that's like, Oh, I like, that's newly diagnosed, and they just want to use a Dexcom. And like, you know, I did the stone ages way, so to speak. I know it wasn't as stone ages as putting the needle in the spoiling water and reusing it. But like, you know, I did the multiple daily injections for years, and I did the testing multiple times a day for years. Like, as I've commented on post in the group A lot of times, I didn't get the Dexcom until I was out of high school. I think I was like 19 or 20, I went to the nurse every day, three times a day, four times a day, sometimes I was in the nurse's office more than I was in class. Now I'm just going on a tangent. No,

Scott Benner 24:10
no, I hear you. So you know, so, so you know that that two hour warm up period causes you grief, but you don't test and can you tell me why?

Unknown Speaker 24:18
Oh, you sound like my doctor. I don't know.

Scott Benner 24:21
I'm just asking, listen, you can do whatever you want. I'm just asking, like, when you know that that's a pain point for you, how come you don't prioritize the testing in there? If

Speaker 1 24:30
I felt really, really sick, like, if I was peeing a lot like, or like, nauseous, or whatever I would, I'm making myself sound like, sound like a very bad diabetic, and this is gonna need severe editing. No, you're

Scott Benner 24:44
not. No, you're listen, I think you're sharing what's happening to you, which I think probably happens to more people than you would expect. And I'm wondering if you can add insight into what stops you from just testing a couple of times. And maybe people could say, like, I mean, you say. You wanted to come on and see if and share your story like, you know, tell me, like, What stops you? Is it just, are you can I give you some examples? Are you irritated that you have to do it? Do you forget? Do you find yourself feeling combative about it, like I shouldn't have to do this? Or do, you know, even,

Speaker 1 25:18
like, I would say a bit like all the above kind of and then not to mention the fact that, you know, I had to keep track of where my meter was all the time. And now that I don't really use it, I don't keep track of it as much. And I think you could

Scott Benner 25:37
do it, Julia, I think you could, like, plan ahead and have your meter around every 10 days, don't you?

Speaker 1 25:42
I'm not liking what I'm saying here, and like I'm putting my foot in my mouth, and I

Scott Benner 25:48
think you're being honest. I just feel like you're being honest. If you're uncomfortable, you should stop, but I feel like you're being honest, yeah,

Speaker 1 25:54
yeah, no, I'm I'm Scott. What I'm doing is word vomit. Essentially, I

Scott Benner 26:00
feel like you're okay. Well, I if you're comfortable, I don't think you're doing anything wrong. You shouldn't worry about how you're what you're doing. You're just saying what you're thinking. Yeah, nothing wrong with that. Okay, well, if you like, we'll move past it. Yes, absolutely. So, okay, so you have the dog. Can I ask you, what are the like value ads, like, what are the things that you've noticed having the dog have been helpful with? And are there some things that it's been a problem for? Like, what are the goods and the bads

Speaker 1 26:29
it's been good because, like, you know, she makes me aware, because she'll start alerting to me, like, like, an hour, sometimes even before my Dexcom is going to go off and like so she'll know, like, I'm in a normal range, and she knows I'm heading either direction. I don't know which direction always, because, you know, sometimes there's that steady arrow, and she'll be alerting when there's a steady arrow and like, something's happening. So you gotta watch it. And

Scott Benner 26:58
then you look and you have, like, a 125, blood sugar, but it's not, doesn't seem to be moving in either direction at the moment. Yeah, and

Speaker 1 27:06
then, like, 30 to 60 minutes later, that alarm is going off. Isn't that incredible? It is

Scott Benner 27:13
pretty incredible. Well, listen, so then my question is, is when she alerts you, do you just wait to see what happens next? Or do you test or do something to, like, intervene.

Speaker 1 27:22
So what I do is, like, technically, I'm only supposed to, like the service dog company only, only recommended doing this. Like, if I'm if she's alerting to the numbers we set. Like, I said, 90 and 190 but since she gets so enthusiastic about like, alerting to me and like, doesn't like, basically as a panic attack, I'd say, I'll give her a treat before it's the required number to kind

Scott Benner 27:48
of calm her down. Yeah? And does that stop her from alerting? Though,

Speaker 1 27:51
not always. Oh, the other thing she does when she alerts, she pants, so like, she'll start panting all of a sudden. At first, we just thought, is this dog extremely thirsty? Is this dog like very hot, like we couldn't understand the panting. And then I talked to some people from the who had diabetic alert dogs from the same organization. They said, No, their dog does the same thing. Do you find

Scott Benner 28:14
it valuable having the dog? Or do you or is it like, more problems than value?

Speaker 1 28:21
Oh, 100% valuable. Like, I know, like, she's only four now, but like, I can't imagine living life without her. And like, you know, it's who's to say what the technology is like in 510, years. But like, I almost kind of not want to live without a diabetic alert dog now that I've had one,

Scott Benner 28:41
right? Oh, that's good. Well, that's good. So it's been a real positive experience for

Speaker 1 28:45
you. Yeah, excellent. Did I mention her name is pretzel. Pretzel.

Scott Benner 28:48
I know pretzel. I don't know if she's a girl or a boy, but I'm imagining she's a girl, because I think I hear you calling her she, yes, she is. She your only dog. Had you had a dog prior to that ever?

Speaker 1 28:59
Oh, no. And this, this is where we can talk about, like my, my life, life a little bit. So I live on a farm in rural Massachusetts, and we have 300 sheep. My parents are sheep farmers, wow. And we have one Border Collie and three Great Pyrenees, guard dogs, okay? And so pretzel has many dog friends, and she also has a lot of cat friends, because we have several cats too, indoor, outdoor cats. She so she loves other animals. Good,

Scott Benner 29:34
good. Again. You have other you have other pets and working animals too, yeah, but this

Speaker 1 29:39
is the coolest thing, and I can't believe we only just are just getting to this now, our quote, unquote, new Border Collie, which we got this past December, started alerting to my blood sugars too. With no training, she is far from like the professionally trained, like perfect in person service dog. Like, you can't you? We've taken her out in person a couple times, and she's like, you know, crazy, because she's like, I think she's just like, a year and a half now or so, how

Scott Benner 30:08
do you think she learned? My mother and I go back and forth.

Speaker 1 30:11
Her being seeing pretzel get treats, and wanting to notice that when she paused me, she gets a treat. But she's also alerted before pretzel has apparently, Border Collies are the smartest breed, or one of the smartest breeds, and we think she just has a

Scott Benner 30:31
knack for it. She just figured it out. That's pretty awesome. That's nice. Weird

Speaker 1 30:34
thing is, we've had like, four or five other border collies in my lifetime, and none of them knew how to do it,

Scott Benner 30:41
maybe seeing presel Do it somehow. Yeah, help them figure help that one figure it out. Hey, how come you don't work on the

Speaker 1 30:48
farm? Or do you I help out somewhat on the farm?

Scott Benner 30:52
Okay, but it's not a job. No, okay, no. Do you have brothers and sisters? No, I'm an only child. Okay, how about other like you said that you had a relative with type two and a relative with type one. Do you have any other autoimmune issues for yourself, personally or with your mom or your dad? Not that I know of. Okay, all right, when you post in the group and you're looking for answers, do you generally find that you get some Yes. You find it valuable. Yes, yeah.

Speaker 1 31:21
I mean that I've noticed recently, and this is nothing against you, Scott, but I've noticed recently that Facebook has changed the way things are. And if you don't put a post with your image, sorry, image with your post,

Scott Benner 31:36
you'll it ignores it a little bit. Yes, yeah, you won't

Speaker 1 31:39
be a scene. So I try to put some sort of image in my post and make it seem you

Scott Benner 31:46
ask a question, you feel like you get a good response and a conversation with people. Yes, good, yeah, that's excellent. How did you find the podcast?

Speaker 1 31:54
I actually found the Facebook group before I found the podcast, I had recently joined Facebook. Like, I was actually a late to Facebook person. I joined it like, I think when I was like, 18 or 19, like, a year or so before the pandemic, yeah, I was searching diabetes one day, and your group popped up, okay,

Scott Benner 32:19
and then you got in there, popped around, figured out it was from a podcast. And now you're Yeah, here, okay, well, that's amazing. Yeah, now I'm on the podcast too. Well, you certainly are. That's excellent. Very cool. You're using Omnipod five, right? So, yes, do you find that using, you know, like an algorithm based system, like this, has it been valuable for you? Has it made things easier, like, what's your experience with

Speaker 1 32:42
it? I think this is just how my body works. I don't think the Omnipod five keeps me in range as much as some other pumps have in the past. Specifically, like the Medtronic one, like I personally, unfortunately had a bad experience with tandem only because their their setup is little hard for people with dexterity issues like myself, that's a message to tandem to change up their system in the future for people with dexterity issues,

Scott Benner 33:12
what about the tandem pump? Did you find difficult putting

Speaker 1 33:16
the insulin in that tiny hole and then attaching that tube to the other part of the system. Okay, it was a couple years ago, so I kind of forgot, that's

Scott Benner 33:26
forgot. And then Medtronic, you said, What do you know, what system you were using with Medtronic,

Speaker 1 33:32
I was on it up to like one or two systems before they started requiring you use their own system. So

Scott Benner 33:40
they're on CGM, yes, okay, yeah, okay, yeah. And so that was just a, just a regular old in some pump it had as you set up the basal raids, it didn't, it wasn't making adjustments or anything for you. Yeah,

Speaker 1 33:51
yeah. I want to say my last Medtronic was a 630 G, but I don't remember. I

Scott Benner 33:57
see, and then you went from Medtronic to tandem, then from tandem to Omnipod.

Speaker 1 34:03
Yes, I see because I was, quite frankly, just fed up with the tubing. Like, that's another thing. Like, I'm clumsy, so I used to rip out my tubing at least once a week. And going back to my point about, like, where I mentioned, like, the type of body I have, like, I noticed that for whatever reason, my pods do not always last three days, and they'll start leaking on like day two or 2.5 okay, so I have to have my prescription written for every two days, okay? And still, I don't think it keeps me in as range as like the other ones, but I'm now trying fiasp and hoping that will faster insulin. Yeah, okay. And I know this is it's gonna sound like a sin to come on here and say this, but like, I also am bad at Pre Bolus thing, but I don't think

Scott Benner 34:56
that sounds like a sin at all. So let me ask you, like with the omnipot. Are you, I don't know. Are you thin and you have trouble finding, like, like, kind of flat spots for it? Is it like, wobbling around? Do you feel like the cannula is pulling out? Like, what do you think's happening? Yeah, yeah, exactly.

Speaker 1 35:09
Like, I'm like, 110 pounds, about and only four foot 11. So, like, they said that, like, tiny people have these issues. You would think, with all the kids on on the Omnipod, they fix these problems. But do you

Scott Benner 35:25
have do you try, like, one of the like tapes, or over patches or anything to help it from moving? Have you ever tried that? I

Speaker 1 35:31
use skin tack a lot. I felt that the tapes that worked too much like I couldn't get it off when it was time, okay, and it didn't necessarily help with the leaking. Okay. Have you ever tried your belly? Yes, but I can only put it on one side of my belly because of my surgical scars from the hydrocephalus. Oh, no kidding. And also I noticed, and I think I read someone saying this the other day on the group, that the belly is kind of a painful insertion spot,

Scott Benner 36:05
people who are very thin. Yeah, yeah. My daughter wears it there she but she pinches up. So let me ask you, how do you eat? Do you have any special way of eating? I

Speaker 1 36:17
would love to say I'm keto, and I eat low carb, and I have a perfect time and range, but that's not the truth.

Scott Benner 36:24
Why would you love to say that? Because I feel

Speaker 1 36:28
like that's kind of like, the right thing to say, like, and I know like, we shouldn't be talking about, like, there's no really right or wrong with diabetes, because, like, regardless, we're going to have this for life. So I guess, I guess that's why I say that, since I'm gonna have this for life, why don't I just eat what I want, right,

Scott Benner 36:47
right? Make sure I understand. You feel like people are listening, and you should say, I eat very low carb, and my blood sugar is super stable and, like all that stuff. But that's not how you eat. And so, yeah, but you earlier, you said that you're in the range your doctor's happy with your a 1c seems very reasonable, like, so, yeah, how did you learn how to Bolus for the foods that you do eat? Trial

Speaker 1 37:10
and error? I'm a very picky eater, so, like, that's another reason, like, why I was going to tell you I'm not very good at Pre Bolus, because sometimes I'll have a meal, and I'm not sure how much I'm gonna finish of it. Okay,

Scott Benner 37:23
okay, well, it happens to me all the time. I mean, it happens to everybody, which is why, what you'll see people do sometimes, or something I've talked about on the podcast in the past, is I always just assume there's an amount of carbs you probably always eat, right? Like, so even if you sit down with 50 carbs, or you sit down with 40, or you sit down with 80, whatever you have on your plate. Yeah, you can say to yourself, you know what? I don't know how much of this I'm gonna eat, but I don't think I've ever sat down and not eaten 15 carbs. So I'm gonna Pre Bolus the first 15, and then as I see the rest of this food's happening, I'll put in the rest of the insulin, which is kind of how the reason I think of it that way is it's how I used to do it when Arden was younger. Yeah. So does that? Does that make sense? Yeah, yeah. But anyway, what happens you eat your blood sugar shoots up. You got to bring it back down, or it comes back down on its own,

Speaker 1 38:13
yeah? And then that's the other thing that I'll say about. You know how I talk about knowing what my blood sugar is 24/7 Yeah, like when I start to see those double down or double up, I start to, like, either rage Bolus or rage eat, okay? And I don't do that all the time, but it's become a little bit of a pattern, and it's worse on some days than others, okay,

Scott Benner 38:39
yeah. Well, what happens, like, if you see the shooting up blood sugar, for example, is that, like, you're like, Oh, I didn't put in any insulin, or I didn't put in enough insulin. Yeah,

Speaker 1 38:49
I didn't put in enough. And then I don't always correct if there's a double up, depending on how long ago I corrected, like, right now I'm going double up, and I corrected at this moment. 33 Yeah,

Scott Benner 39:04
is that food or do you think you're experiencing adrenaline? It's food

Speaker 1 39:08
and also probably a little bit of adrenaline, because, you know, I was nervous to come on here and talk

Scott Benner 39:13
to you. Yeah, you said before we started recording that you were nervous. Do you still feel nervous? Now,

Speaker 1 39:18
I thought I talked a little bit too much about disabilities, my like, gripes about being disabled, so I was not very happy with that part of the conversation. But I'm also glad that I did talk about disabilities, in a sense. So let me

Scott Benner 39:35
ask you a question, would you, if you like, when, when this gets edited? Like, we could take your name out of it? Would that make you comfortable? Like in the beginning, you said, Hi, my name is Julia. But what instead, if it was like, Hi, my name's and there was a blank space where you said your name and then it went on. Would that be better for you? No, I didn't say

Speaker 1 39:51
my last name, so I think it's okay. Okay,

Scott Benner 39:56
whatever you want. You just let me know. Okay,

Speaker 1 39:59
yeah. I just as long as it's not going to prevent me from getting a job. I guess, you know, my parents are always saying, Be careful what you post online, because it sticks with you forever, and your potential employers could be watching. That's, I think that's a myth.

Scott Benner 40:13
But, well, I listen if, if someone hears you. I mean, I've only been talking to you for 45 minutes, but I would think that if someone hears you talking in here, they'd be interested in you working for them. So yeah, I'd hope so too. Yeah, I think you're doing yourself solid here. I think you're representing yourself very well. I

Speaker 1 40:30
was actually planning on talking about a little bit less about the disability. It flowed well into the conversation. I'd say

Scott Benner 40:37
I'm happy that you're happy with it, yeah. So okay, so your blood sugar might shoot up if you don't Bolus right away. Sometimes you put insulin on, sometimes you don't, but what about when it's falling very quickly? Like, does that? I mean, it must be scary, I imagine. So what do you do that makes me

Speaker 1 40:53
want to eat, like, a lot, and like, fast, and like, you know, back, like, I keep saying back, like, back in the day, like, I'm like, I'm an old person, but it was really only, like, seven or eight years ago when I graduated high school. Like, you know, they had all these rules, but, oh well, you have to prick your finger. You have to go the nurse three times a day and prick your finger, and we will not let you eat greet alone until you're 70 or below. And like, now I'm treating it like way earlier than that. So yeah, I often, like, scroll through the group and I see all these people talking about how, like, their school, like the kids, can, like, manage their diabetes on their own. They sometimes will text their parents their blood sugar without even having to go the nurse. Like, I kind of wish I had that freedom, although I do think the whole having to have a cell phone out in school thing is a little bit complicated, but with diabetes, I don't think it should be locked away either.

Scott Benner 41:55
Yeah, I understand you. Mean, hey, do you have help with your blood sugar management? Do your parents help

Speaker 1 42:00
you? Not so much anymore. If anything, pretzels might help. She She keeps me in line, I'd

Scott Benner 42:08
say. But like when you got Omnipod five, for example. Like, do your parents help you set up the settings? Or did something you did with your health care provider, or you did it

Speaker 1 42:16
yourself? No, I did it my myself. Excellent. Good for you. Yeah, I shouldn't say this either, but I've set up the last few pumps without training, and I think you're doing all right. Supposed to have training.

Scott Benner 42:29
Yeah, Julie, I love how everything you say you're like, I don't think I should be saying this, but here it is. And you know,

Speaker 1 42:35
I don't really think of myself as a person that really says controversial things. I don't, but, yeah, I guess for some reason, Scott, you're really bringing it out in me today. I don't, I don't know what it is. Maybe, maybe I just feel like you're a diabetes whisper and I can tell you all my secrets. I'm on my

Scott Benner 42:55
Oh, well, I'm happy you're comfortable. I would tell you that I don't think that having set up your own system without your doctor is controversial. I'm sure a lot of people have done that. Yeah, you know, you've had diabetes a long time, right? You know, you know what your basal looks like. You understand how to Bolus. You know what your carb ratio is. That's, you know, pretty much, pretty much it, right? Insulin sensitivity, yeah, yeah. Do you find that stuff changing throughout the month for you, or is it pretty stable?

Speaker 1 43:19
Are you talking about, like, on a hormonal level, since I'm a woman, I have Yeah, yeah, and your settings, yeah, okay, I am on birth control. I actually just take it for regulate my periods, because, like, you know, like, when I was like, 18 or 19, I was like, having really heavy periods, and I was like, sick of it, and I went to a new doctor, and I got on the birth control, the pill that, like, I pretty much got my period, period, maybe, like, once a year.

Scott Benner 43:49
Okay, well, yeah. I mean, I don't know about how that's being accomplished, but that sounds nicer. The

Speaker 1 43:55
other thing I kind of wonder is, on the days, if I was, like, supposed to get my period. Had I not been on the birth control? Are there, like, are there certain days that my blood sugar may be worse, and I wasn't very good at tracking my cycle, so I don't really know how to tell that

Scott Benner 44:13
is the variability? Pretty, like, you're not seeing like, significantly different blood sugar. No, like, insulin needs week to week, or something like that. No, no, no, so it makes it easier for you to manage things. Yeah, excellent. I will

Speaker 1 44:27
say that. I don't know if it's because of the leaking pod issue, but my carb ratios are four to seven right now. And like for me, four to seven seems like, like, extremely like, almost like a like, I don't want to go much lower than four to seven. Maybe some people are at lower, but I like, you know, so depending

Scott Benner 44:51
on the time of the day, your blood sugar, your your carb ratio is one unit covers four up to one unit covers seven. Is that? Right? Yes, that's what I mean. So you feel like, you feel like you have a little insulin resistance. Yeah,

Speaker 1 45:04
and I'm, I'm hoping that the fiasco is going to help with that. It's interesting. I've been on the Omnipod limited market release trial for, I think, just like, over a month now, maybe a month and a half. I am thought I was going to be 100% better about, like, bull sing on time, like, Bolus thing as soon as I eat. Like, just because I'm not carrying around one device or two devices, I hear you and like, now I'm like, I've only been slightly better at that, because it's like, you know, I'm like, I'm always looking for my PD. I'm like, where's my PDM, did I lose it? Oh my gosh. What happened to

Scott Benner 45:40
it? Now it's just on your phone and and it's talk about it a little bit. It's it tell me why it's difficult to Pre Bolus consistently, maybe the organizational

Speaker 1 45:49
skills, maybe the picky eating, right? Or maybe just the fact that I am still getting used to it being on my phone. That's the other thing. I have to be careful, because, like, you know, I can see why the kids who have their cell phones locked up in school, like these cell phones can be quite addicting.

Scott Benner 46:07
So you get into that phone and you start doing other stuff. Is that? What happens? Julia, yes,

Speaker 1 46:12
yeah. What are you? My father's on me about that all the time. What grabs

Scott Benner 46:17
your attention in your phone?

Speaker 1 46:18
A lot of people say, like scrolling and like, like, Instagram, yeah, different things. Basically, you don't want to say, Julia, no, maybe not. It's okay.

Scott Benner 46:29
You don't have to, yeah. But basically, the phone, you open up the phone and you you get a little, you get a little side tracked, yeah?

Speaker 1 46:35
And like, you know, I don't think it would have helped me in high school. Like, guess I would have loved to have my phone on me in high school, because, like, you know, high school is boring and stuff like that. I do think there's reasons. And like, you know, gotcha now I have to have my phone on me. 24/7 whereas before, as long as I had my PDM and I didn't, didn't leave my phone for too long. I was okay. Like, I don't want it to, like, say, signal loss for like, hours on it. And

Scott Benner 47:08
right, right, I hear you. I got you. I think most people open their phone and get distracted by something else. Like, there's a lot of lot of shiny stuff in there, and a lot of those algorithms are written to keep your attention and, you know, it's, it works, you know? So, yeah,

Speaker 1 47:24
I hear, um, yeah, you know, another thing I always talk about is, I live in rural Massachusetts, and like, we're, like, we get hit quite a bit, a bit with like snow and like rain and all that the winter. Like, I'm like, Well, what happens in a in a power outage? Like, am I not going to be able to Bolus? Like, what's going to happen? Like, thankfully we haven't, like, we haven't had that happen.

Scott Benner 47:47
Oh, you worry about, you worry about, what if power goes out for too long? What? How do I charge my phone or my devices or something? Yeah, because,

Speaker 1 47:54
not just on the reliance on technology for just like me being a young person, but now on the medical standpoint, like it's a medical device.

Scott Benner 48:06
Okay, well, listen, I would tell you here's the easy answer, in my opinion, go out to the car, plug it into the car, let the car run and and charge it there. Yeah, it's a good idea, right? I've done that before. We've had power outages since Arden's had diabetes, some kind of extensive stuff. And we did the that's exactly what we did. We were like, All right, well, I guess we're just gonna have to go charge it up in the car. And we did, you know, so that worked out really well. I thought,

Speaker 1 48:34
yeah, I also, I buy kind of over by those power bank things. I have a lot of those,

Scott Benner 48:42
yeah? So you have a little, you have a little anxiety about that, is that, right? Well,

Speaker 1 48:46
yes, Scott, we discussed this earlier, an anxiety disorder, but

Scott Benner 48:50
I'm letting people hear about it. So do you, does the disorder have a name? Technically,

Speaker 1 48:55
I think it's OCD. Ah, yeah, because that's what they that's what they said with autism diagnosis that it's like an anxiety disorder related to OCD,

Scott Benner 49:05
okay? And they think that's, that's what they think is part of the autism diagnosis. Yes, okay, yeah. And not hydro the hydrocephaly can't do that.

Speaker 1 49:16
I mean, that's what I would like to know too, but I haven't really been able to find out much information on it.

Scott Benner 49:24
I mean, I looked online for you just now. I don't, you know. I don't know how true or not true it is, obviously, but it says that obsessive compulsive disorder can potentially develop in individuals with hydrocephalus or other neurological conditions. So

Speaker 1 49:37
maybe, wow, yeah, yeah. Well, this is something I'm gonna have to talk to my neurosurgeon about, and maybe I'll have to have talked to him by the time this episode comes out, and I could write you a little note and say, This is what my neurosurgeon said.

Scott Benner 49:51
Yeah, it's just, it says, potentially, I don't know that it, I mean, doesn't mean it did or anything, or not. Yeah, I'm not, I'm not discounting the other thing. But do you have rituals? Just like counting rituals or anything like that. No,

Speaker 1 50:02
it's more the obsessive thoughts like, again, it could also be somehow related to my tic, but I went to a neurologist, and they were like, No, we don't know what to do, so you have to go somewhere else. That wasn't very helpful.

Scott Benner 50:18
We don't know what to do. Go somewhere else. It's definitely not helpful. No, oh, they

Speaker 1 50:22
were like, we can't help you, but we'd like you to have come in for another appointment.

Scott Benner 50:28
We'll take 40 more dollars, but we're pretty sure we can't help

Speaker 1 50:31
that's the other thing that's amazing about Massachusetts. I'm lucky enough to be on mass health so, like, I get my insulin and then all my prescriptions and everything for like, free. Oh, that's awesome. I'm still a proponent of insulin for all. Because how can you not be a proponent of insulin for all of like, yeah, no, I've been lucky enough to. I don't have to pay for it. Good. Well,

Scott Benner 50:55
I'm glad, I'm glad it's working out for you. So give me just one example of, like, obsessive thoughts, like, what something gets stuck in your head, like, what? What's an example of something you've been through before? Well,

Speaker 1 51:06
you know, I sent you that email last week, and you were like, Julia, please don't overthink this with all those questions about the podcast and preparing for it. And I'm like,

Scott Benner 51:16
Yeah, because I don't know you prior to like, I hope people understand, like, until you tell me I have an autism diagnosis when we're speaking, I don't know that. You know, like, I didn't know about hydrocephalus, I didn't know about that, like, so I get to learn. I get to know you while we're recording, just like everybody else does. Yeah, I see your point, though. Yeah, you were you asked a lot of questions. I'm like, you don't need to overthink this. Just show up and we'll talk

Speaker 1 51:38
and it'll all work. I'm not calling you out, Scott, I know

Scott Benner 51:42
Julie, I know. Yeah. Don't worry. You and I are getting along very well. Don't you worry. I understand you. I

Speaker 1 51:47
was just using that as the example I could think of, yeah.

Scott Benner 51:52
So, so what happens is, you start thinking about it, and then you feel like you have to do something about it,

Speaker 1 51:58
yeah? Like, kind of like, when I'm trying to figure out, like, what I'm doing with my life. Like, I email those support people, like the vocational rehab or, like, different support services. And like, I mean, I guess it's kind of hard not having a job right now. And, like, Sure, not knowing when my next job is, like, or, quite frankly, what I want to do with my life. Yeah,

Scott Benner 52:19
I was gonna say, what's the biggest concern there? Is it that you don't have a direction, or that you don't have money because your parents are helping you, I would imagine, right? Yeah,

Speaker 1 52:28
kind of, I don't have a direction, and then also kind of that I don't have a degree. Technically, I'm like, I did like, 50 credits towards a degree, but like, like, no math and no science.

Scott Benner 52:40
Does that concern you? Well,

Speaker 1 52:43
I often say to myself, like, if I'm going to have a hard time getting hired because I'm disabled, how much of a harder time am I going to have getting hired if I'm disabled and don't have a degree? Okay? And you know, Scott, I feel like I'm using you as a therapy session, which I was hoping not to but, you know, doesn't matter. We had a second meeting, you would know that this is right on character for me. Yeah.

Scott Benner 53:09
Okay, so do you have anything that we haven't talked about that we should have, or anything you feel like we've missed?

Speaker 1 53:14
Let's see be kind to people with disabilities. Obviously, this is how I'm gonna leave people like be kind to people with disabilities. Know that everybody's going through something that you don't know what they're going through. I highly recommend that if you can get a diabetic alert dog and like, don't be afraid to fundraise. Because, like, I fundraised and like, made the money. And like, it's it's not necessarily taking charity.

Scott Benner 53:40
Did you feel bad at first when you started doing it? But, or no,

Speaker 1 53:44
no, because, like, my community where I live is very generous,

Scott Benner 53:48
excellent. That's wonderful. I'm glad you found people that are very supportive, that we're willing to help you. It's lovely. Yeah, yeah, absolutely. And I'm glad that the podcast group is is helpful for you too. I I'm glad it's there for you, and you're finding value with it. Yes,

Speaker 1 54:03
and maybe by the time the stairs, I'll listen to every episode.

Scott Benner 54:06
Good luck. There's a lot of them. I don't know. I was talking to somebody the other day, and they were telling me all the stuff they know about the podcast, and I thought, I don't even know if I know all that. That's really something. So it's like,

Speaker 1 54:17
somebody who, like, re watches, like, the same show, like, over and over again. It's like, I don't know their favorite TV show. And like, knows everything about it. And like, the TV stars don't know anything about it, yeah, no, I find

Scott Benner 54:29
it. It's lovely that people like it so much that they would listen and listen again. It gets a little weird when people think, like, they think they know what I'm thinking, You know what I mean, or they make some big assumptions and stuff like that. I'm like, oh gosh, that's not like, that's not even right, but how do I explain that to you? And if I do, you're just gonna think I'm, you know. You're just gonna think I don't understand, or I'm making it up or something. So you just get, sometimes you get in these weird little loops with people where they It's very strange, like they seem very well intended, but they feel like they know things. And I'm like, oh gosh, you just. You're misunderstanding this, but there's not much I can do about that. So anyway, I really appreciate you doing this with me. Thank you so very much. Yeah, it

Speaker 1 55:07
was, it was so much fun. Oh, Scott, would it be possible if I sent you a picture of pretzel, and I don't know if you can put like,

Scott Benner 55:16
Yeah, send me a good picture. I can put it with the episode. Yeah, okay. That'd be great. That's awesome. Make it a right, a landscape, you know what I mean? Like a little wider than fall, and get it. Get a nice high res picture, send it to me. I'll put it like when I put the when I put the episode up on the website. I'll use the picture, yeah,

Speaker 1 55:33
yeah. And I'll make sure to get one with her service dog best, so everybody knows she's a service dog. Nice. And

Scott Benner 55:39
it's okay if I call the episode pretzel, that'd be perfect. Okay, maybe I'll call it a bowl of pretzels. Who knows? We'll figure it out. Oh, that'd be funny. All right, hold on one second for me. Okay, stay with me.

US med sponsored this episode of The Juicebox 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, I'd like to thank the blood glucose meter that my daughter carries, the contour next gen blood glucose meter. Learn more and get started today at contour, next.com/juice box. And don't forget, you may be paying more through your insurance right now for the meter you have then you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now, and links at Juicebox podcast.com, to contour and all of the sponsors. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card if you're looking for community around type one diabetes? Check out the Juicebox Podcast, private Facebook group. Juicebox Podcast, type one diabetes. But everybody is welcome. Type one type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.

Please support the sponsors

Donate