#658 Body Dysmorphia and Type 1

Grace has type 1 diabetes and body dysmorphia.

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

Scott Benner 0:00
Hello friends and welcome to episode 658 of the Juicebox Podcast.

Today's show is with grace. She has type one diabetes, and also lives with body dysmorphia. I think this conversation is incredibly enlightening. I really appreciate Grace coming on the show and sharing her story with us. I want you to remember while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. I just got a note from the tea Wendy exchange. They are thrilled with how many of you filled out the survey last month in March, but they still need more of you. They need your answers to those simple questions. T one D exchange.org. Forward slash juicebox. All you need to be is a US resident who has type one or a US resident who is the caregiver of someone with type one, you go to T one D exchange.org. Forward slash juicebox. Join the registry fill out the survey takes less than 10 minutes. When you do it. You're helping people with type one diabetes, and you're supporting the podcast

this show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor, you may be eligible for a free 10 day trial of the Dexcom G six head to dexcom.com Ford slash juice box to learn more, or you can just get started.

Grace 2:03
My name is Grace. And I'm a type one diabetic.

Scott Benner 2:08
How old were you when you were diagnosed? Chris?

Grace 2:11
I was 18.

Scott Benner 2:14
And now you are

Grace 2:16

27. Okay,

Scott Benner 2:18
that was nine years ago?

Grace 2:19
Yeah. Yeah. Yeah. Right. doesn't feel like it.

Scott Benner 2:23
Yeah. Did you know the trick on that one? What do you mean? Well, you're 18 and then 27. So one and two are only one away? Oh, right. Yes, yes. And then the seven rolly one offs of Boom, just like that. Because if it was like you said, like, you know, 18 and 28. I'd be like, boom. 10 years? Yeah, I don't know. It's just

Grace 2:45
no, that's very true. I was actually doing the math last year on my birthday. And I was like, wow, I've only I've almost been a diabetic for 10 years. It's kind of crazy to think that I'm coming up on my double digits. Yeah. Anniversary.

Scott Benner 2:58
No, I know, we should really talk about that. And because I'm just, you know, I'm just, I'm trying to. Yeah, I'm boasting a little bit about my math.

Grace 3:07
So math skills, world.

Scott Benner 3:09
I just want people to notice how quickly I did that. Okay, so just about a decade diagnosed in your late teens. Can you tell me a little bit a little but what was that a little bit about being diagnosed?

Grace 3:22
Yeah, so I was in college, I was a resident assistant. So I lived on campus all year round, because I stayed for the summers as well. And I think it was my sophomore. It was in between my sophomore and junior year when I was starting to feel like really crappy. And I wasn't sure why I assumed it was because of my workload, and that I wasn't taking care of myself. I was sleeping all the time. And my friends like to put it in perspective, Grey's Anatomy at that point had 10 seasons, and I watched all 10 seasons because of how little I was doing with my time. So I was just constantly exhausted. And so because I was feeling crappy, and the term was over, I set up a doctor's appointment. And at the time, my aunt lived next door to us, and the morning of my appointment. My mom called her and was like, yeah, like Grace's just already asleep on the couch. It's not like her she's usually awake and ready to go. And so my aunt was like, Alright, I'm coming over just let me know. She throws up an ad that moment I literally was like Mom and I ran into the bathroom. My aunt ran next door, tested my blood sugar. It was unreadable on the little machine that she had. So they drove me to the ER right away. And of course with my aunt, being a nurse, I got in right away and I did all these things. And honestly, it was all a fog at that point. But yeah, I was in there for about a week. My I guess without eating my blood sugar was over 750. So, yeah, I was just chilling there. My agency at that point was over 16. So I was cruising this this this way for a while. Was that

Scott Benner 5:16
well, on your way? I have a couple. Yeah. Yeah, I think you might have answered one of them. But why? Why was your aunt so aware of you might throw up because she's a nurse?

Grace 5:26
Because she's a nurse. And I don't know, because I was asleep at the time. I don't know what my mom was saying to her on the phone that made her think along those lines. Yeah. But, you know, because my aunt lived next door, she obviously saw me. When I came home from school, and I had lost a lot of weight I lost over. I have to say, I lost over 35 pounds in three weeks. And I had started going to the gym. I know, it's so silly to even think like, in hindsight, I started going to the gym, two days a week. And when I started losing weight, I was like, wow, like, I'm, I'm doing this thing, I'm doing a great job. And that was not the reason. I think she saw that and all these other things. And something triggered in her brain.

Scott Benner 6:12
You were probably sitting in that gym thinking like, I'm gonna be rich, and I sell this idea to people. It's three situps. I just

Grace 6:22
got an incline for 10 minutes.

Scott Benner 6:24
You watch. You watch a little bit of Grey's back when you know, the cast was right. Yeah. And Arden told me the other day, you're on your way. She says I never finished Grey's Anatomy. I just started it over. And I was like, yeah,

Grace 6:38
yeah, I feel like there's two types of people, those who started from the beginning who just keep rewatching it until a certain point and those who are just jumping in now. It's just two different generations of watching grace.

Scott Benner 6:50
They don't understand any they don't know. I mean, I don't want to just tell you, but when O'Malley died, it really started to go downhill for me.

Grace 6:59
Oh my God, it was like the turning point of destruction in my brain. It was not great.

Scott Benner 7:04
I'm embarrassed to have been able to put that sentence together. Okay. So you get in there you have one, it's only nine years ago. So alright. Are you like, Is your family stunned that you have diabetes? Or they're like, Oh, this is what happened to and Gertrude like, you know, what level of right wareness did you get that type on?

Grace 7:28
Definitely stunned. Definitely stunned. I am the only one in my lineage at this point that we know of that has type one diabetes on both sides of my family. But what was really cool was that my uncle had had married a woman and she had type one. So my parents leaned on her a lot, which was really nice. But she also learned about diabetes so long ago, so our conversations don't exactly match up. And it's kind of funny because now she asks me about Omni pod and those things. So I actually got her switch from her Medtronic Omni pod. And so it's kind of like, again, with a generational thing. She was able to relay her experiences to my parents, which I think they benefited from. And then I get to have these conversations with her and we get to discuss and she'll talk to me about appeals so it's

Scott Benner 8:19
really cool. How to Write appeals. Yeah, yeah. What were you in college for? Like, you were there all year round? isn't like were you just a dork or were you doing something scientific or

Grace 8:29
so. So, I, I have to say I love living on campus because I had my own space. And when I lived on campus as a freshman, that was what my parents had said, they said you can live on campus will pay for you to live on campus for a year. But after that, you have to figure it out or you have to commute and so during my first year, I had my own RA and he was great. And he had said you know you might make a good resident assistant. So then I applied and because of that I just got kept living the lavish life of having an apartment for free.

Scott Benner 9:07
Better than not better than home. Right? You did. You sounds like you visited.

Grace 9:12
Like I did, I did visit but it was for like a weekend or my family. We used to do Friday night pizza night, every week when I was a kid. So I would come home for pizza night, stay on Saturday, go back up, and things like that. But I really did enjoy being on my own.

Scott Benner 9:28
Do you think it broke your mom's heart that you want to leave so badly?

Grace 9:31
I think she was devastated because when they moved me on campus my first year she kept asking, she was like, you want me to help you put this away? You want me to do this? Let me do that. And I had said to her I was like no, no, I got it mom, like I'm good. And my dad was the one who had to kind of like ask her out and I saw the heartbreak on her face.

Scott Benner 9:53
You got the first 18 years I'm gonna take the rest of them I need you to re write like I was

Grace 9:58
the test child. So I understand being sad that I'm no longer home because I'm definitely her right hand. But I very much enjoyed my independence. Gotcha.

Scott Benner 10:06
Any other brothers and sisters? Sounds like Yes.

Grace 10:10
Yes, I have two younger brothers that were each two years apart in age. So where we grew up really close together,

Scott Benner 10:20
you want me to do it very quickly for you? 25 and 23. Yes, very good. Very good. Thank you. I don't want to have to I won't bore you with how I did that. But pretty amazing. Any other auto immune in your family? We're even like you like, let me throw some out at you. hypothyroidism, celiac. A ton of allergies. Bipolar, like anything, anything? Yeah.

Grace 10:51
So we actually are a pretty healthy family. For a while. We thought my cousin had celiac, but she ended up just farting. It wasn't. Yeah, she had some other issues going on. But it wasn't celiac. Because at first I was like, Oh, great. Like, we're on the same team. But you know, we are not

Scott Benner 11:12
alone on an island that within your I am you know, I'm on my own island beyond your you know, beyond your Aunt aunt that has type one also, by marriage type. Yeah. Hi, Mary. Um, yeah. Is there anyone else in your life that has type one diabetes?

Grace 11:29
I have friends who have type one diabetes. Um, there's actually there's three of us. And we're actually all connected on my like fiance's fit friend side. So I actually went to college was one of the girls I'm friends with. And we went to college, we were in the same major, but I didn't know she had type one diabetes at the time. Okay, but now, after kind of getting back together after me, my fiance's friends, and she was a part of that group. Now, there's three of us who all have type one, and we're called, we call each other the diabetes. And yeah, we kind of lean on each other, which is

Scott Benner 12:11
really cool. Excellent. So what do they give you in the hospital? When you leave? You get pens.

Grace 12:17
So yeah, I was on pens for about a year. Actually. Probably shorter than that. Probably like eight months. I was on pens, and then I switched to Omni pod.

Scott Benner 12:26
Oh, that quickly. Alright. And you? Yeah, you use the CGM at all Yeah. Dexcom libre, anything like that.

Grace 12:32
Yep, I have the Dexcom. And I'm now on the dash systems. I have the Dexcom on the dash.

Scott Benner 12:36
Oh, are you thinking of doing Omni pod five when it arrives?

Grace 12:40
Um, it's, it's a thought. I'm not. I'm not one to like, so quickly switch, especially when I enjoy routine and the data is still fairly new to me. I only recently was able to get coverage for the dash because of the new health insurance that I got from my job. So thank you. Thank you. Um, the one good thing about having to switch jobs is that I got better insurance. So, um, yeah, I am still getting used to the dash. Okay. But, you know, we'll see what happens on the horizon.

Scott Benner 13:13
That's hilarious that you said that grace, for reasons you don't know. When they first made the Omni pod five. Do you know what they called it?

Grace 13:22
i I'm pretty sure I heard you speaking about it called the horizon.

Scott Benner 13:25
The horizon. Were you saying that? Were you? You funny? No,

Grace 13:28
I wasn't. I wasn't definitely like a 2020 recollection.

Scott Benner 13:32
Right? Because if you were doing that, that's some next level upon and I appreciate. I'm not that skilled, you know, get in there. Don't Don't knock it. You're doing great. So how long have you been listening to the podcast?

Grace 13:47
I've been listening for probably about two years, I have an hour commute to my job. So I listened about two hours every day on my way to and from work with sporadic breaks for music, but yeah, pretty regularly.

Scott Benner 14:01
It's okay with me. If you listen to music just as long as long as you consume as long as I come back. Two episodes a day. I think whatever you else you do in your free time is fine with me. You know, now, if you're only getting in one a day or a half, then I'd like you to if you just kind of rejigger your life and

Grace 14:20
rearrange, it's like to get that full second episode in there.

Scott Benner 14:23
I'm working pretty hard over here. Grace, and I would like to be paid back. Okay. So listening for about two years. How did you find out about it?

Grace 14:31
So that's funny. How did I find out about it? I think it was on Instagram. I saw a post that I follow a bunch of, I guess you could say celebrity diabetics, who are really just people who have their pages and content focused on diabetes. So someone had posted about it. They had shared something about how they were listening to an episode and it hit them really hard. So in a good way, obviously. And so then I looked it up. And I started from the beginning. And chugging along. I honestly don't even remember what number episode I'm on because I'm just I'm constantly listening to it. It feels like it's a stream of conversations, which is pretty cool.

Scott Benner 15:13
Oh, do you have any, like, confusion about knowing me? Do you have that going on? Do you ever talk to me anything like that in the car? Good for you look at you all rock solid in your head. Good job. So, what made you reach out? Because i Your topic is, I mean, I'm done chit chatting now because your topic is like utterly fascinating to me. And I just wondered, first, what made you want to share about it.

Grace 15:41
So I was listening to a bunch of the after dark episodes, because again, like the topic that we're gonna be discussing, it kind of it does fall on, like the mental health spectrum. So I was listening to a couple after dark episodes, and I was kind of almost like waiting for one. You know, I was like, Oh, I can't wait till they talk about something that I really can get into. And I just kept listening. And no one was saying anything about it. So

Scott Benner 16:10
I was like, are you here? Because I let you down.

Grace 16:13
Yes, I devastated I must represent

Scott Benner 16:17
idiots not going to follow through on the things I need to hear about. I'm gonna have to do it myself. Actually, I'll tell you by now. There's got to be 50 people who have been on this podcast who were on because they wrote to me and said, Do you have episodes on this topic? I go through this. And I said, Well, I don't but if you come on, then I will. And you know, that's how it happens on so I appreciate you doing this very much. I don't know anything about this. So can you explain explain the first time you had the feelings and what they were like and how it's either changed, morphed or stayed the same and etc please.

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Grace 19:40
I live with by dysmorphia. And I it it started even before I had diabetes, so I was a competitive dancer. And I myself I'm just stronger, more muscular my family is you know As they say big boned, but I was never a fat child will say, but in comparison to other dancers I was on the outside will say, so I was always looking at myself as bigger than I actually was. And even to this day, I look at myself as bigger than I actually am. So when I got diabetes, and it was pre diagnosis, and I lost all that weight, I even then did not see the weight fall off, which is half of the issue that I had when it came to being diagnosed. Because in the hospital, they're like, Okay, how, like, have you lost any way recently? And I was like, No, I really haven't. And my mom and my brother were there. And they're like, yes, you have. And even like listening to my brother describe how my face looked. He was like, You looked so sunken in like, your skin was kind of just like hanging. I didn't see that in myself. I didn't see any of that, because I always perceived myself as a heavier girl.

Scott Benner 21:10
And I asked you, sorry, no, don't be sorry. Yeah, I just want to ask a question. Please say no, if it's not right, can I give context to your height and weight? Or would that be bothersome? No, absolutely.

Grace 21:20
I am five, seven, right. And I currently weigh 215.

Scott Benner 21:27
Okay, back when you were diagnosed?

Grace 21:31
I was five, seven, and I weighed 138.

Scott Benner 21:36
Okay. All right. And so that was prior to 138 was prior to the diagnosis or after the weight loss.

Grace 21:43
It was it so when I was weighed in the hospital, I was 127. So the 138 was the last time I had weighed myself prior to being diagnosed. I understand. Okay, because all my classmates, they're like, Oh, you're looking so great. And I was just obviously, being fueled by that positive, positive. I'll put in air quotes. Positive notion that oh, you lost weight. You look so great. So I wanted to see what my number was. And I was like, wow, like 138 That's like, fantastic. I've never seen this number even when I was in high school. But I never saw that number. I was like, wow, like the gym again. The gym. I'm doing so great. So

Scott Benner 22:24
see greatness came from because you saw a number shift. But what can you recall back? Did you look in the mirror and see a different, like a difference?

Grace 22:32
I didn't. And even now I I look back on pictures. Like if I'm scrolling to embarrass a friend for a birthday post or something and I scroll back through all of my photos. I don't see that change. I am the same body even even when I look at pictures where about my smallest pre diagnosis definitely sick. I don't see that.

Scott Benner 22:57
Okay, so as you scroll, is it I mean, let me just I'll jump for a second and then I'm gonna jump back again. Like did you seek some sort of treatment at some point? I did not didn't Okay, I did not. So when you scroll through those pictures, do you go like is there something that happens in your brain? Do you see yourself and think Oh, there I am I look terrible. There I am I look terrible. And no matter if you're you know what weight or health situation you're in, like sunken in face not sunken in about to find out you have diabetes, you know, using insulin? Is it all just the same feeling when you see yourself over and over again?

Grace 23:31
Yeah, I have to say, doesn't matter what picture I'm looking at, if I'm not a child looking at like, Baby young child pictures, every picture that I've taken myself, there's always that feeling of okay, you know, and thankfully, I have an amazing therapist now who I talk with her very often about this, because for a lot of people when it comes to body dysmorphia, because there's a large number of people who actively and know that they suffer from body dysmorphia. But a large population of people on this planet suffer from it in some way shape or form on like a minor scale. And after my therapist was like sharing that information with me, it helps me recognize that people who I perceive as perfect also have their own issues obviously with like how they look and their bodies. And so I have to kind of step away from that, oh, I want to become that or I want to do that right?

Scott Benner 24:31
I imagine so I imagine that that it can go in either direction as well too Right? Like you could see yourself at a I don't I don't know how to put it actually you're gonna have to excuse me because I don't know the terminology around this but let's just say you're you're in an unhealthy weight and you don't see yourself that way. You could just look at them look at them and be like I'm doing well you know and then yeah, you know, but be 3040 pounds overweight, and it actually be impacting yourself but you don't allow yourself to see that. So that's sort of the that's the same idea. It's just not in the, in the direction that we think of it when we like usually what we think is, I mean, don't you? I'm generalizing now right. But when when I hear body dysmorphia, I think of I mean, honestly, I think of a person who's, you know, who looks better than they feel they look, I guess, the simple way that I think of it, do you think that's accurate?

Grace 25:26
No, yeah, that's definitely an accurate and probably the more perceived understanding of body dysmorphia is from the, let's say, let's use like a general like an athlete who sees himself as not in their actual body they see themselves as overweight or not fit or something like that. But it does go the other way where there are individuals who have body dysmorphia, where they are larger or they have more weight, but they see themselves in a younger and not younger in a lighter frame, which again, could be detrimental to their health and I I can't speak from experience because that's not the body dysmorphia that I experienced. But there are people out there that I've seen on these I don't want to say chat rooms but like on these Facebook groups that I follow that talk about this there are groups out there who are like oh, just went to the doctor's office and they said this on a third but I don't see it I guess I'll discuss this in therapy this week. You know, kind of a thing where there are things that impact your health, when you are at a heavier weight things that have to do with like circulatory system and blood pressure and all that which will have an out lasting effect on your health. So yeah, it definitely does does go both ways. I'm gonna

Scott Benner 26:42
do something a little boring for a second, but this is from Hopkins. medicine.org Okay, Body Dysmorphia is a mental health problem. If you have BDD, you may be so upset about the appearance of your body that it gets in the way of your inability to live normally. Many of us have what we think are flaws in our appearance. But if you have BDD, your reaction to this flaw may become overwhelming. You may find that negative thoughts about your body are hard to control. You may even spend hours each day worrying about how you look, your thinking can become so negative and persistent. You may think about suicide at times. And then it says that the cause of body dysmorphia, excuse me the cause of body dysmorphic disorder is thought to be a combustion of environmental, psychological and biological factors. Bullying or teasing may create or foster the feelings of inadequacy, shame or fear of ridicule. So, did you ever feel bullied? Or did the situation where you were at dance allow you to bully yourself if that makes sense?

Grace 27:43
Yeah, definitely a. I am my own bully kind of way. Um, I had to say growing up in grade school, I had amazing friends. My school was like looking back now I know, being an educator myself now that it wasn't this way. But it was literally a fairy tale. I had amazing friends. Everyone was friendly. We always everyone played together. So I never got that external pressure or external commentary on myself, but it was always internal.

Scott Benner 28:14
Okay. I'm gonna give you a little more from this website, just because I think it's interesting. It says that this affects women and men equally. They think that factors contributing could be family history of this, or some similar mental disorder. abnormal levels of a brain chemical doesn't say which one, your personality type or life experiences. Is there any Has anyone else in your family come? Like? I guess the question first is are you very open within your family about this?

Grace 28:45
Um, I wouldn't say that I've said to my family. Oh, yeah, I suffer from body dysmorphia, or I live with body dysmorphia. I've never gone out and said something like that, but my younger cousin and I we are very similar. And she recently had an incident where she bought a really cheap pair of pants from h&m, if anyone's looking for jeans, don't buy them from h&m. But she bought them and she went to bend down to play with the family dog and her pants ripped. And I on her face, I literally saw the emotion that I feel inside when I'm about to bend down to do something, the fear and the realization that my biggest fear literally just happened. Um, so I know that I'm not the only one in the family who, who experiences these types of feelings, but no one really talks about it at all, which is the hard part.

Scott Benner 29:47
Yeah. Is it like an omnipresent thing. You open your eyes in the morning and think I don't like the way I look or is it you have to See yourself? Or do you have to be put in one of those situations where like, Oh God, I'm about to reach over my head, my stomach's gonna stick out of the shirt like this, like, how does it present itself to you?

Grace 30:09
For me, when I wake up in the morning, I don't feel anything, but when inside when I'm starting to get dressed, that's when I start to be overwhelmed by the thoughts. And so I try my best to set up my outfits the night before, because at that point, I'm so exhausted, that I'm literally just putting together clothes that I know fit me and that I know, look good, because I've worn them in the past. Because if I wait until the morning of and I'm in a rush, or if I'm running a little bit behind, then it becomes this entire event. And so a self strategy of mine is to try and do that. Okay, so ahead of time, I'm not, you know, dealing with that issue.

Scott Benner 30:52
Yeah. So if, if, if you, I see what you're saying. So you pick out the clothes when you're tired, and being tired kind of stops you from having the thoughts as much I guess. And then in the morning, because the outfits been chosen. You don't, you don't go through the same thought process as you would when you're standing in front of the closet.

Grace 31:12
Right? Cuz as soon as I stand in front of the closet, and I have all of my options there and I'm awake, and I'm ready to move. Then my brain goes, Oh, I can wear that. Oh, actually, I can't because I hate when this happens, or I don't know, this crap, I don't think

Scott Benner 31:27
grabs my stomach. You can see my arms and this like that kind of stuff goes like Yeah. Okay. And yeah. And but then where does it go from there? Because I mean, I'm not comparing but I've stood in front of clothing. Well, I can't wear that. And but I don't then feel badly about myself afterwards. So does it right, viral? How does that what happens after when it all starts? Where does it go?

Grace 31:50
It is definitely a spiral. So I would say I have created a system for myself for when it comes to work attire, but God forbid we're going out or we're socializing with friends or things like that. And I, I have to then go outside of what I'll call like my work capsule wardrobe. It is a entire event, there have been a handful of times where I've, where I've literally just sat on the bed, my fiance's come in and she's like, we're not going our way. And I'll be like, you can go, but I'm not going. Which is when it becomes the issue where that now it's impacting. It's impacting my life and my daily experiences and things such as that.

Scott Benner 32:33
Okay. Do you have any other thing going on? Are you Would you consider yourself to be depressed or anxious or anything like that?

Grace 32:41
Yes, I'm also I also have depression, which runs in my family. So I am working on that as well. Um, so there are other things, there are other mental health factors, such as that. So

Scott Benner 32:56
this is personal. But isn't it funny, where the line gets drawn in my head on my phone, and I'm gonna ask a person you've been talking for 20 minutes. I'm like, oh, but this isn't too personal. I just had that same experience. You know, it's gonna be in an after dark, I'll let you find it. You'll enjoy it. So you're with somebody. Right? So does the fact that they think you're attractive? Not help?

Grace 33:25
It does not register at all?

Scott Benner 33:27
Okay. at all to then what happens at sexy time? Do you lay there like, Oh, God, like, Please let this end? She can see me or like, I don't have I don't what happens, I guess.

Grace 33:39
Yeah. So. So interestingly enough, so now my fiancee is very loving. She is very caring of me. She she goes out of her way to tell me what she sees in me of me what she thinks of me and like my body and everything. But anytime we're going to get intimate. All lights have to be off. I'm already in bed. I'm underneath the covers, like, I don't want you to look at me. Which has been a topic of conversation for us, because she obviously doesn't see what my what my vision of myself is. And no matter how many times I try to describe it. It's something that is hard to compute. For another person who's

Scott Benner 34:30
looking at me, yeah, your dog can't even understand it.

Grace 34:33
I know. She's so bad. I'm sure the mailman is literally standing outside. She's so bad.

Scott Benner 34:40
I think the one of the things that it brings in and that makes it so difficult is if the other person is looking at you and being like I very attracted to you. So and you're Yeah, you're keeping that from me. I guess it could feel like on some level and then they could start feeling impacted by it. Like there's something up with them and that's why you won't share yourself Yeah,

Grace 35:00
yes. And we have to have that conversation as well, because I don't initiate any form of intimacy like that. Because again, how I feel about myself. So we've had to have a conversation where I've had to share with her like, Yes, I find you attractive. I love you, I want to do this, but I am not comfortable with myself to do this. Okay, so then it does it impacts her own mental understanding of Okay, now, am I on attractive? Does she not love me in my body, which is not the case. It's all it's all my issue. But again, bleeding into that type of scenario, you know,

Scott Benner 35:38
does it impact like, even functionally, are there positions you won't get into or things you won't do? Just because of how you feel like your body is going to look in that situation?

Grace 35:49
Yeah, I, I have to say, it's not. I haven't experienced anything like that. Like, I'll definitely hesitate. But then she'd be like, come on, like, let's just try it. So it's definitely there is still hesitation and there is still concern and like, self awareness of okay, how am I gonna look in this position? Yeah. But,

Scott Benner 36:17
sorry, I have another question. This one's gonna. This one's gonna sound like less than tactful, probably. But I genuinely want to know, this might be a male perspective thing. I have no idea we're gonna find out in a second. Is there a part in the process where you just tip over the edge and you're having such a good time? It goes away? Like can you ever like up like, not that you can let go of it? But you know what? I mean, do you ever get like, right? To a point where you're just like, I would do this in front of my mom in the mall? I don't care this very good.

Grace 36:47
Um, I have to say, if if I'm sober. No. If there's alcohol involved, or some other type of, you know, elite, something that will alleviate the focus from me, then yes, I'm able to kind of have that. I want I don't want to say out of body experience, but it definitely feels like that because I'm not thinking about myself.

Scott Benner 37:09
Okay, Chris, did we find her? Do we find your line? Did you just stop yourself from saying if I'm Hi? Hi, I would never I was like, Oh, this girl was very open right till she got the weight and she's like, I'm not saying that.

Grace 37:26
It's not It's not often I'm more of a gummies girl like I won't like smoke it so much. But I am I am a gummy. I like eating gummies and treats and such so if it's in there, I'm not gonna say

Scott Benner 37:40
no, I can I say girlfriend or fiance doesn't matter to you know doesn't matter. So if she sees you grab a gummy Do you think she like run and change the sheets and everything?

Grace 37:51
This is a high probability starts

Scott Benner 37:53
throwing light bulbs out of the out of the ceiling.

Grace 37:55
Yeah. turn all the lights off. Make sure the sheets are ready but a little corner so Grayson, just slide right in. Yeah,

Scott Benner 38:01
picture phone puts it on private, she starts texting friends. It's happening. Leave me alone.

Grace 38:09
No one contact me until I reach out, please.

Scott Benner 38:12
Oh my god, can I ask you a question that's completely disconnected of all this? Yes. How great is it to be in a same sex relationship because I assumed your periods have linked up by now. So the same time that nobody wants to have sex, nobody else wants to have sex, he must be amazing.

Grace 38:27
Hey, it's, it's quite great. We are we're pretty synced off by a few days. So when I start, she knows it's coming. And she's the baby out of the two of us where she will, she will milk it until the cow is dry. She will complain and all this jazz. So as soon as I get mine, I'm like, Hey, prepare yourself, because we call it we call it Nellie. So we can talk about it. And public will be like, oh, is Nelly coming this week or is now like coming next week? I'll be like, now he's coming for you. I'm just

Scott Benner 38:59
thinking like, how great must it be to like, not feel sick to your stomach or something or, you know, just blot and know, just intrinsically, your partner's not going to call it you right now because she's in the same exact situation. Whereas in my scenario, I'm like, wow, the boobs are way rounder now than they usually are. And then she's like, I don't feel good. I'm like I'm just saying. It seems like a match made in heaven is what I'm getting at. Yeah, that's excellent. We have our we have our

Grace 39:29
ritual of murder mysteries are crashing into some crazy series. And then we go back to our normal routine until next month.

Scott Benner 39:39
Murders in the building on Hulu. So I

Grace 39:42
haven't watched it yet. It's on my watch list. And she hasn't started yet because I told her I wanted to watch it. So it's fun.

Scott Benner 39:51
I enjoyed it. I really enjoy Steve Martin and me too. I love him was very good. And Selena Gomez didn't bother me so I thought it was her Nice. She was good. I there was part of me that was like, I don't want to watch this Wizards of Waverly girl. She was She did a good job. So yeah,

Grace 40:09
I haven't seen Selena Gomez in any shows like, since with Wizards of Waverly Place, I haven't seen any of her other movies. So I have no real perception of her acting skills. So this is a good review.

Scott Benner 40:21
Thank you. You'll be good. You'll you'll enjoy it. I am and I was also just a little mesmerized and proud of myself when I pulled the Wizards of Waverly Place reference out. As I was saying it I was a little like, is this a Jake and Josh thing, and I'm getting this wrong? So hey, anyway, it's

Grace 40:37
channel who are the other actors? What is it called?

Scott Benner 40:40
So moving the kind of like the, the sexual problems into the real world? Do you have things you avoid doing in your day that people don't know about? But you're very aware about? Like, How are you coping? In real life? So?

Grace 40:56
So it's actually interesting you say that, so?

Scott Benner 41:00
I'm amazing at this grace, what do you I mean,

Grace 41:03
you are a professional what was I think?

Scott Benner 41:07
Here's what I knew about body dysmorphia five seconds ago, there's a person tangentially in my life, who I think is having trouble with this. And I don't know what to do for them. And, and other than that, besides me, you know, fooling myself into thinking I don't need loot need to lose weight at a couple points in my lifetime. I don't have any real like connection with the idea. Yeah. So I'm doing an amazing job understanding all this plus, I got you to talk about Lady sex, which I think people are gonna love. You know, and I'm telling Allison, I'm doing really great, but but let's just stop in the middle. So I can congratulate myself.

Grace 41:51
We always need that moment to pat ourselves on the

Scott Benner 41:53
back. Well, joking aside, like, you know, again, for 30 seconds, I'll turn this around. But if you ever want to, like have pressure, put yourself into a scenario where you're having a conversation with people, it's going to be recorded, and then heard by a lot of people. And you don't know what the, you're talking about this. So you know, I'm not without risk here to let's just say, I could come off, like at some point, and I'm always gonna share the episodes with you. So if I sound like an idiot, or sounds like I say something stupid. I felt like I'm cutting it out. You just Yes. And then going, Oh, my God, this. Why do I listen to this podcast? I didn't know what to ask this girl. Right. Anyway, I'm giving myself a lot of credit. I think I'm doing good. You're doing great. By the way. Is there any apprehension about talking about it?

Grace 42:44
Um, not so much. Because I'm kind of like, taking this meeting as sort of like a therapy session. That's kind of how I walked into it so that I didn't have any reservations. You know, I hear that I went into it. Like, pretending I was talking to somebody that I've never met. That I've only heard to my, my car stereo,

Scott Benner 43:06
then just tell them? Yeah, yeah, half an hour. I got you naked.

Grace 43:10
So yeah, that's quite impressive.

Scott Benner 43:13
You're way too easy grace. Alright, so Alright, so in your regular life, those things that we kind of like were able to see. Because, I mean, honestly, because making it into a sexual situation simplifies it, but does anything about that carry into your regular life?

Grace 43:30
I think that. So I'm an educator. So I work with sixth graders. And I think that in my every day, if I see other staff wearing something that I really like, I will automatically be like, Oh, but you could never wear that. Because when so with my job, we have like a very strict dress code. And sometimes it's hard to find things that I actually am like, Okay, I could wear this to work and not think about the slew of issues that I would foresee my body having with this specific garment. And as soon as I see someone else in something that I would love to wear, but I'm not confident or I don't feel like I would even look good or even fit in it. Or if it would just accentuate something that I'm trying to hide automatically. It's like everything goes down the toilet, and I'm spiraling with it. And I have to kind of reset my brain. So I'm going to go into the classroom. I'm like, Okay, we're not talking about this anymore. So there's a lot of compartmentalizing in my life when it comes to that. But do

Scott Benner 44:41
I'm thinking back on being younger and being at school, and I can't remember the woman's name, but I remember torturing as a group, you know, it wasn't just me. It was a pitchforks and pitchforks kind of thing. But we taught her to substitute teacher to the point where she cried. Oh, I'm looking back. I'm starting to feel About About up, I'm trying to be honest grace. Does that, like has that like, what would happen if a kid called you short, fat? ugly, stupid? Like, what if they leaned into you on something like that? Do you think you'd crumble in front of them? Or do you think you could hold it together like,

Grace 45:18
so I have a pretty tough exterior when it comes to my students. So a little background, I work in a deaf school. So I work with a smaller group of students than a typical public classroom. So I have 18, in comparison to other schools where they're like, high 20s, low 30s. So I have a pretty close relationship with a majority of my students, I have yet to come across a single one who would say something maliciously, like that. If it were to be the case, then I feel like I would kind of put on my like, tough face and have that conversation with them. But then maybe on my drive home, I would be obsessed with that, with that thought in that comment, and possibly take something out of that capsule wardrobe that I have for work.

Scott Benner 46:18
Gotcha. Talk about the obsessed part, like, how long would it last? What would it entail? Do you ever have thoughts of suicide, like the website talked about?

Grace 46:28
So I've never had thoughts of suicide myself. Um, so I have to say I'm grateful for that. But with the obsessiveness, it can last a very long time. Like an example, I had a shirt that I used to wear in college that I don't know, it wasn't like a professional shirt, it was something that I would wear if I wanted to look nice when I was going out. But I would say it was like my comfort shirt, nothing could go wrong with that shirt. And I remember someone had made a comment about how I always wear that shirt is the only shirt they ever seen you wearing and how it starting to look worn out. And it doesn't look as good as it used to. And automatically that shirt went in the garbage. And I thought about that comment every time I went out since it was just like something like, I don't even have the shirt anymore. And I'm still thinking about oh, like, I can't keep wearing this item because it's going to be Oh, you against me?

Scott Benner 47:30
No. So you start thinking like even the stuff you like now I can't overwhelm because it'll get worn out and then I'll have to throw it away. So now you're not and I'm gonna lose that option. See? Oh, see you're not wearing it to save it to keep the option but it doesn't help you functionally. Right? Hmm. Oh, you poor thing. Okay. Oh, yeah. That's terrible. Do you speak? I don't know if I'm doing this right. ASL. Do I say do I ask if you speak ASL? Or do I?

Grace 47:58
So I, I use ASL. I am fluent in ASL. And I teach in sign language and communicative my students through sign and my friends through sign. So it is a it actually, funnily enough, it has an impact on my sugars. If I am working, my sugars are stable. But if I'm like distance learning, like I am this week, my sugars are much higher, because I'm not putting as much effort into my day, if that makes sense. I would

Scott Benner 48:25
like to see you up your Basal when you're when you're working without from home. Yeah, yep. Because you're saying you're up and moving and signing. So you're literally active. And so yeah, you need less insulin because of that. Yeah, I wish I would have known about this when we were making the variable season series, I definitely would have felt was a variable. That's just really interesting. Yeah, yeah, do the kids know you have type one.

Grace 48:50
So some of them do. So interestingly enough, the way that my class is set up is that my co teacher teaches social plays, and I teach science. So fifth grade, we talk about the body and the systems of the body. So when we talk about the immune system, and things like that, the textbook mentions diabetes and that's kind of like when we use that half hour to learn about diabetes the CO teacher and I kind of work that out because I am a living example of an autoimmune disease. So having that conversation with them most of them understand my past years they really had a better grasp on it then this year's but again, with distance learning everyone's a little behind and takes more time. So I Yeah, but it's been pretty cool.

Scott Benner 49:37
I feel so bad for those kids. Because if they can't, they can't hide on distance learning like the kids who can hear can because if you have to sign then you have to be visible in the camera. The other kids just hot, right? Yeah, exactly. You just see that. Yeah, they just showed the other day. Arden said to me, I slept through a class. I was like, yeah, she Yeah, she's like Bed learning. And I was like, yes. We call it beds. And it's back again, after New Years. I just got the email as you and I were sitting down there going back again. So,

Grace 50:14
yeah, we're going back on the 18th. And my students definitely do better when they're in person, as many students do. But when they're home, obviously, there's other distractions. So I'm very excited to be back. And my kids miss it, because a lot of them this, like school is their only place where they have seamless communication. So they're very excited to come back. Yeah, do

Scott Benner 50:35
some of them live in homes where they can't communicate with people in their homes?

Grace 50:39
Yeah, I actually have a lot of students who are from Spanish speaking families. So not only is there a written language barrier, but there's also the fact that some families don't sign with their or they don't have in depth understanding of ASL. So they're not able to fully communicate with them. So

Scott Benner 50:58
you just blew my mind is ASL one standard language. So if I come from a Spanish speaking household, or I come from a French speaking household, we both do the same ASL.

Grace 51:08
So no, so every country has their own sign their own sign language, so sorry, I'm an idiot. Yeah, no, no, you're totally fine. It's actually a huge misnomer that, you know, the thought that sign language is universal. It actually isn't, which is pretty, pretty crazy. Um, so if I were to go to another country, I may not be able to communicate with the deaf community there because we're using two different types of sign language. Yeah.

Scott Benner 51:40
All right. So Grace, like I'm looking at a photo of you right now. Yeah, zooming in, they get popped up. I have a silly photo, you have a nice photo, it's fine. And if I said to you right now, just out of left field, if I said, Grace, I see your picture. You're very pretty. What's your first reaction to that statement? Oh, okay. Thank you. You guys like you can, but do you believe it? Are you just being polite? I'm being polite. Okay. So what are the words that pop into your head when I say that? No. Just like that. Okay. Yeah. So

Grace 52:15
you're like, he's being nice. He's trying to be nice. I say, How did

Scott Benner 52:19
you end up with a partner then? Like, how did you believe somebody enough like to date them?

Grace 52:26
So we met in a very interesting class in college called death in perspective, so not death with enough death like th at the end. And that class, it really forced us to be vulnerable and share really intimate experiences of ours. And because we were in that class, it was kind of as if there were no more secrets. We we spent a lot of time together. And after we both graduated, we were both single, and we kind of just met up as if no time had passed. So the comfortability was there that there's nothing I have nothing to hide from her. Okay. There's no There's no more secrets. She knows. Basically, everything. surface level.

Scott Benner 53:20
So yeah, you've um, again, I'm doing my buddy. Let's keep in mind, I'm 50 and straight, but you've always you've always been gay.

Grace 53:29
So I had a boyfriend in high school. Um, but that was it.

Scott Benner 53:36
You are not how they would refer as you are not gold star that is that

Grace 53:39
I am not gold star. Look at you knowing your term pretty

Scott Benner 53:43
impressed. I know. Better than when I knew how long you had diabetes after doing

Grace 53:52
lovely. Yeah, no, I am not gold star.

Scott Benner 53:55
I'll let people look that up on their own. I'm not explaining everything to you people. Yeah. Let's just say Scott knows things. That's all. Yeah, I'm old. But I'm keeping

Unknown Speaker 54:04
up. You're keeping up you got it.

Scott Benner 54:08
Meanwhile, My knee hurts for three weeks. I don't know why. I didn't do anything to it. I just woke up one day. Like what is wrong with me?

Grace 54:17
Right, my ankles the same way. I have no idea what happened to it but is tweaking like no other Kelly Kelly's

Scott Benner 54:22
like, are you gonna get a knee replacement? She's like, Oh, God, am I gonna have to take care of you? And I was like, Oh my God, I hope not. I just don't want to I feel she could leave me in a room to die is my concern. Like if I couldn't get around, like what would stop her from just not bringing food and water? Right? She'd be like, Oh, I can finally get this insurance money and get started again with a guy I really like.

Grace 54:43
Right, right. I can build a whole new life for myself. Yeah, I

Scott Benner 54:47
mean, it's not too late to get away from this idiot. Okay. I think this is not me wrapping up with you. It's me. It's me making sure like, is there something I'm not asking you I should be.

Grace 55:02
So not so much asking. But so my body dysmorphia has had a huge play and how I handled my blood sugars in the past. So I'm not trying to like write the script for anyone here. But if, like, obviously, if your sugars are higher, you're not as controlled, your body will then start using its own self to kind of fuel you know what I mean? So in the beginning, when I was like, oh, like, I lost all this weight, everyone on the outside is like, wow, like, you look great, I want to maintain this, I was not keeping my sugars in check, because it meant that my body weight number was going to be lower.

Scott Benner 55:45
So you were exercising the diet bulimia on purpose, kind of thing.

Grace 55:50
To an extent, I wouldn't say diet bulimia, because I wasn't doing excess exercising, but I was not. Um, you were keeping your butt was not going to cover the sugars coming in. Okay,

Scott Benner 56:05
so you kept your blood sugar high on purpose, because you knew would keep your body weight down? Correct? Correct. But you you described your weight now versus your weight then, like nine years ago, like, like, pretty differently. So what are you doing or not doing now? Like that? Like, I don't know, how are you living now that you weren't living then?

Grace 56:25
Yeah, um, I, I have a endocrinologist who is extremely, extremely supportive. But she also yells at me in a very supportive way to get my sugars in check. And like to kind of remind me that, you know, having high blood sugars is not good for a long, sustained health, healthy life. And with the things that I'm actively working on with my relationship with my job with my schooling, I want to be around long enough and healthy enough to be able to continue doing them so that all of this isn't to waste. So she yells at me when she's like, you know, right around the holidays, I'm always higher, because I am lazy, or I don't calculate a right amount, or I eat more than I'm supposed to, or whatnot. And she'll yell at me be like, was this you on purpose? Or was this an accident? Okay. And so she will, she will check me when she sees high numbers for long periods of time. And she'll kind of guilt trip isn't the right word, but it definitely makes me think about, alright, like, obviously, that wasn't a good, a good thing, especially if it was on purpose is not on purpose nearly as often anymore. But it definitely wasn't the beginning, where she was like, this is on purpose, I can see that there's a trend here you're thinking about December 3, so

Scott Benner 57:46
yeah, so if your weight hits a number, then you stop using as much insulin to try to drop the weight.

Grace 57:52
Right, she and she noticed that trend, I would say probably within the first year of us being together, and she's like, Alright, we're gonna nip this in the bud. So this doesn't go forward. So yeah, I'm very fortunate that I have someone who is medically aware and also, in tune with me enough to be able to make the right comments. That'll just make me see things a little bit differently. So I'm on the right track again.

Scott Benner 58:16
Okay, I'm gonna ask you a couple probing questions. If I make you uncomfortable, you'll tell me. So you, I hate to use them. But you. I mean, you just described your weight as probably being 80 pounds heavier than when you were diagnosed earlier. Yeah, about right. Okay. So how long after diagnosis? Were you like actively keeping your weight down by not giving yourself insulin? And then at what point? Did you start using more? And is your like, what do you attribute your weight increase to?

Grace 58:50
Yeah, so I would say, the first year after diagnosis, I was very good about keeping my numbers in check doing what I was supposed to. Because I was living with my parents at the time. And they were, you know, they were asking their questions. So I, again, wanting to be the perfect golden Angel, child firstborn that I am. I was like, no, no, everything's great. Like, everything's perfect. And then I noticed the weight gain. So it was my second year, I would say, the second year and a half, that I was like, Ooh, like I can, I can play with this. And then I'd lie to my parents essentially, and fudge my numbers, but like, no, they're great. When in fact, they were much higher, because then the weight loss was happening again, and I was going down that same trail that I was prior, um, and then switched doctors. She noticed the trend about a year in so I would say it took about three years for a professional to recognize the issue and look at all the facts and be like, okay, like, we're gonna work on this mentally as well as physically. Um, So now, the weight gain is definitely the waking that I have now is more attributed to the fact that I'm not going to the gym anymore. I, I am a full time teacher and a full time student. So I'm in classes all night. And I only have time on weekends to really do things to see family and friends. So I'm at this point, the gym is not a priority for me. So a lot of the weight gain I think definitely comes from the fact that I don't have a routine and I'm, you know, with COVID, we were so sedentary. So we had all that going for us, in a way. So yeah, that's kind of where I'm at right now. And it's not where I want to be. But I'm definitely I have the support team enough to go about it the right way. So, are you looking forward to that?

Scott Benner 1:00:54
Are you um, I have a question that I'm I'm skipping, which I'll get back to in a second. I'm not sure. How are you comfortable telling me what your agency is currently?

Grace 1:01:05
Yeah, so my agency right now is a 6.4.

Scott Benner 1:01:09
You have a ton of lows, or No?

Grace 1:01:12
Um, I It's kind of weird. It. It really depends on the day like what's happening, but I have experienced more lows. Recently, but I think it's just because I'm like over calculating or overcompensating and thinking I'm gonna eat more when I'm not,

Scott Benner 1:01:29
but it's not like your last day once he was 7.9? This one? 6.4? Correct. Okay, correct. From stability, okay. All right. I'm not sure if this is okay. We you know what, it's over now. Like, I mean, just you're here, you've, you've opened yourself up, this is your fault. So yeah. Are you over eating? Are you eating? Are you eating things that are like incredibly unhealthy.

Grace 1:02:00
So not on a regular basis. But I do have an issue with also like sneaking food. So if there are treats in the house, I will sneak treats and then eat them and try to get rid of the evidence. And then I'll do it again, because I got away with it. So there is a amount of over eating or not eating the right things, which is hilarious, because on the outside, it's like, oh, I'm meal prep. And I have this on the third. And I have my containers and everything's measured and weighed out because my my fiance is big into the gym, and she's big into working out and eating right. So we have this meal plan, that's great. But because we're not the only ones who live in this house, there are also treats here that when I was living on my own, I didn't have that issue because I just never bought them. But I do sneak sneak food

Scott Benner 1:02:56
for these motherfuckers that put treats around the house and what can we

Grace 1:03:00
say? No, trying to get rid of them. But before

Scott Benner 1:03:06
I see what you're getting at, have you so I don't know if this is actually like I was just gonna say I don't know if this is like gonna be triggering for me to ask you. But I think we're beyond that. So have you considered an intermittent fasting schedule.

Grace 1:03:20
So I, I have tried intermittent fasting and I'm definitely better when I'm on my routine, meaning waking up, going to work going to work, not just like sitting at my desk, going to work coming back going to class, like I'm much better with that. Because then my eating times results around my availability to eat like my intermittent fasting is after our first period when the kids come back, and then I finish as soon as they get home from work around like 430 I'm able to eat by five before I go into class. So I have that intermittent window, but when I'm home home distance learning, teaching and like all that jazz, I It's like a free for all. Yeah, so there's no I can go anytime that the kids are independent working or a bathroom break or a water break. I get a break. So I go downstairs and I see what's what's happening in there. What's in the cabinets. And yeah,

Scott Benner 1:04:12
gotcha. Okay. I mean, I'm not trying to say that there's some simple fix. I'm just trying to put context to it. Like, you know, my Oh, yeah. My real feeling here is that I don't I mean, I don't know how people deal with stuff like this. You know, the guy the I don't know what you do you I mean, you're doing talk therapy right now. Is that right? Yeah, yeah. Let's psychologist. Yes. Okay. May I suggest bit just based on the people I've spoken to in the past? Move up to a psychiatrist. Might be

Grace 1:04:44
Well, I have I have that for depression. I have a psychiatrist who does his depression meds but we haven't done anything for anything else yet.

Scott Benner 1:04:52
So I say do the depression medication put weight on or make it harder to lose weight?

Grace 1:04:58
Um, I don't think so. Um, I haven't like done a lot of deep research about that specifically because again, like, on the side of the bottle, it has all those, you know, side effects or whatever. But I don't I didn't see a correlation between my weight increase to when I started taking those meds, okay?

Scott Benner 1:05:19
Do you want to exercise? Or is it not something that pops into your head?

Grace 1:05:27
I am lazy in nature. So I am not extremely excited when it comes to going to the gym. I know it's good for me. And I've seen better sugar levels and not as many highs and lows when I'm doing it. So there's that motivation behind it. But if I was a full, typical healthy person, I wouldn't be the the person to just run into the gym and enjoy it. I think the only form of enjoyment was when I was dancing when I was younger, because that's you're working out without thinking about it cuz you're just having a good time. Do you need to do something like that?

Scott Benner 1:06:01
Are you more comfortable? Like this is kind of these are gonna sound like they don't go together. But because you don't see yourself? Well, no matter what. Is this just where you're more comfortable? Is it like, is there any chances it's a decision? Are you trying to match your body to how you feel like I don't know. Like, I don't know what I'm asking you. I'm literally rambling.

Grace 1:06:23
Yeah, but that's actually no, I see the path that you're on. I feel like, that's actually a really good theory to test because if I feel like crap, then I don't do as much because I am crap, basically. And then if I were to work out, but still feel like crap, it's like, well, what's the point? Cuz I feel like crap.

Scott Benner 1:06:43
Yeah, you're putting in all this work, but there's no reward because you're gonna feel like this, whether you weigh 100 pounds or 200 pounds.

Unknown Speaker 1:06:50
Right? Right.

Scott Benner 1:06:52
I could be incredibly, very grace. Actually, yeah, you should send me a copay for this. I think I'm gonna take,

Grace 1:06:58
you know, I should I should.

Scott Benner 1:07:03
I just don't know like that. And there's one other like, indelicate question that I don't know how to ask. And I'm not sure if I'm gonna sound like I'm, I'm not sure how I'm gonna sound when I ask it. And it's What's stopping me? Because I don't have any ill intention with it. It's just, it's an observation. Yeah, I'm really trying. I mean, if I don't know if I'm going to let me drink water. Okay. I have friends who are lesbians. And sometimes I feel like one person in the partnership puts on weight to appear more masculine. Mm hmm. Do I do it? I don't know what I just did. Like, I know

Grace 1:07:49
what you're saying. Okay. Um, so actually, between the two of us, my fiance's the more masculine one and on the more feminine one. So, like, examples as a wedding, she wears a suit, and I wear a dress. So it's not so much that I'm putting on the weight to appear more masculine, because that's not the quote unquote, look, that or the, the, for lack of better term role that I portray.

Scott Benner 1:08:18
Okay. Um, hold on, I gotta clear my throat, I apologize. Yeah. I don't think this is the end, but it's close.

Grace 1:08:29
It's like the coffee's a signal.

Scott Benner 1:08:33
So the reason I asked is just because while I'm doing this, I kind of have myself in a bunch of different head spaces. And one of them is I'm trying to think about what the people listening are thinking. And it's just yeah, I'm not gonna say it's obvious, but I'm not the first person who's noticed that I guess is what I'm saying. Yeah. And so I just wanted to get the question out, because I didn't think that was what was going on. But then if I don't ask the question, then the conversation feels incomplete. The people who are listening

Grace 1:08:57
Yeah, yeah, no, my my fiance is definitely more masculine. And she, like, that's how she sees herself, whereas I don't see myself that way. Yeah, I'm just heavier.

Scott Benner 1:09:10
Gotcha. Listen. I mean, I don't even know what to say. When I feel like I wish you good luck. Like I like I feel like, I feel like I'm pushing you in a rowboat out to the ocean. I'm like, you'll probably be okay. Here. Take a banana. But do Yeah. How long have you been working on it? Bye. Professional. How long have you been at this?

Grace 1:09:35
Three years. Okay. Yeah, I think it's only been three.

Scott Benner 1:09:38
Do you see this as an eating disorder coupled with body dysmorphia? Or how do you think

Grace 1:09:43
um, there's definitely, there's definitely, like eating disorder issues that underlie like, when I was younger, I was, uh, I, I would like, hide what I was eating. My mom was very strict when it came to what I do. And because when she was growing up, the way you look equates to how healthy or so she was always lean very. She was a soccer player, all that jazz. So those things that she learned growing up from my grandmother, she then instilled in me. So God forbid I wanted a pop tart, I'd have to sneak a pop tart upstairs, eat it, get rid of the evidence, aka, throw it under my brother's bed so that the boys who could have all of this, were the ones who were implicated in the stolen Pop Tart.

Scott Benner 1:10:35
So yeah, like be skinny. So a boy buys you a house. Like that kind of thing.

Grace 1:10:39
Yeah, exactly. Exactly. Gotcha. Oh, yeah.

Scott Benner 1:10:47
Yay. My next afterdark that's coming out. So you and I are talking in real time, but it's a little easier with after darks because they happen. I don't sit on after dark. So as long after I record them, my guess is, yeah, the next one that's going to come out is with an old gentleman who has an eating disorder. And he talks about how he dealt with it. And it's fairly interesting. Like, I think you'll like it.

Grace 1:11:16
Yeah, I'm excited. I appreciate after dark that are like that, because there are a lot of overlapping of feeling and experiences in some ways. So yeah, I look forward to that.

Scott Benner 1:11:30
I I have the one that's coming after that is with a sex worker, a female sex. And she came to the podcast through another afterdark episode. So that's cool. Yeah, I'm excited. Really good feeling about them actually. Just what they do in general, not those specific episodes. But what the series does. Yeah, you know, me, like, it's so easy to say like, well, I'll do an episode about Pre-Bolus. And because people need to know about that, and everyone will want to know, but yeah, you know, you don't expect when you're doing things like this, that you're going to get a note from someone who's like, Hey, I'm a sex worker who found your podcast, because someone in another episode admitted to doing cocaine read doing this? Yeah. Like, why? So I want to come on the part. He was just like, wow, really? Like, these are email? Yeah. I did not expect to get my life. But um, that I think it's really cool. Yeah, I think it's building a really great little compendium of the other stuff that nobody wants to talk about who Avi I mean, listen, I make a crazy generalization here. But there's nothing about you, physically, that I would look at, and then jump to any of these conclusions about you. And I know, right, I know that. That's not that's the case for everybody. I don't think that's how people think about it. Like, I think that, you know, we don't see, we don't see, struggle until we see broken,

Grace 1:12:57
I guess, right, usually, yeah. And you know, that's so true. Because, you if you were to meet me on the street, I would seem as if I got my shit together. I am, like, focused, I've got all these things going for me. Well, on the inside, I am digging myself into this deep tunnel, about a glance that you may have never even intended and been like, damn, like they were looking at me for this than a third. You know, on the outside, you don't see that.

Scott Benner 1:13:26
It's so funny. You say this. So I was leaving a convenience store last night. I'm just gonna be very honest and use my honest words, right. And I saw I saw a really pretty big girl. Yeah, that's all okay. Like, I don't know, another way to put it. Okay. She was super curvy. And, you know, if you held her up to the scale at the doctor's office, I bet she needed to lose 100 pounds, you know? Yeah, if that's how we're gonna measure her, and I thought she was really pretty. And I found her attractive. And I as I crossed buyer, like, I don't listen, Grace. You don't have a penis? You don't know about this, but I physically can't not look at her. Like I just like greatly. Yeah, brains. Like maybe we should make that one pregnant. Like, it's just a very weird thing. Yeah, hard to like, quantify what it is to be a boy. But I looked at her. And I tried to smile in a friendly way because then we made eye contact. And it wasn't creepy. It was just glancing like, we were just passing each other. I never even got the ocular like I was hoping to I know that's I'm just being very honest. Right. So because she because we made eye contact, like friendly passing eye contact, and I smiled. And I thought I saw that interface like that. Yeah, that thing you talked about earlier. Like I thought I saw her face on fat Don't look at me. Yeah, you know, and I and there was like this small part of me that wanted to look at it and go I think you're really pretty and then just leave but I didn't do that because that that would be wrong. So I just left. So then I started thinking as I was walking out the she just keep her eyes down all the time. Yeah, like that kind of thing. Like, does she not want to see people because of stuff like that?

Grace 1:15:14
Yeah. And then you're funny you say that? Yeah, it's funny you say that because my accent in college, I always walk with my head down. And she used to have such a feeling about it. She's like, you always look down. Aren't you looking at anybody? That's like, oh, because I don't want people to look at me. I don't want them to look at me because I'm not happy. And I don't, I don't want to see their judgments, because it's just gonna bury me even further than I've already buried myself. Yeah. And it was a it was a constant thing. She she would always, I don't want to say nitpick. But she always be like, pick your head up, like you're next to her. And she tried to be nice about it. But I knew that the argument that we were about to have about it, it was just like a cyclical thing, because I always walk with my head down.

Scott Benner 1:16:02
Yeah, you know what, I think if I can be super honest, the saddest thing I think about your situation, is that not once have I heard about you wondering about how to get out of this? Like, does it feel like it's never gonna stop?

Grace 1:16:16
Yeah, it's stuff. I feel like it's almost like I hate to say it, but like a lifetime commitment. Like, I'm in this for the long haul. And I can talk till I'm blue in the face, I can pay for the best. Psychologists go on whatever medication that doctors feel is best. But I feel like this is a a ingrained feeling that I can't ever separate myself from.

Scott Benner 1:16:45
So if that's the truth, and I'm not saying it isn't or that I know it is. But if it is, is there a world where you can just start looking at your physical body as your health and say to yourself, Okay, I'm never going to feel good about how I look. But I can at least be healthier? Because you did talk about wanting to stay alive and do things like that. Yeah, earlier.

Grace 1:17:07
Yeah. And it's definitely it was, it would be almost like a homework assignment for myself, like anytime that I see myself having to actively say, Okay, this is like you're giving this many hours today? How many? How many different ways can we be healthier for ourselves? Instead of looking at it being like, oh, like, I have to walk through the world looking like this today? You know, so having to give myself that literally like homework, and have it be a everyday assignment every day of every minute assignment. So that, you know, it's so easy to start in the morning and be like, okay, like, I'm in this great, bright, happy mindset. I'm going to be healthy today. I'm going to make healthy choices today. And then something happens and it changes it all. So that's why it would have to be a constant homework assignment. You know what I mean?

Scott Benner 1:18:03
Yeah, so when something happens, then you fall into kind of those, like sneaking food like that kind of like, yeah, that situation. So if I may, it does feel like you have multiple things happening. Like, I don't think it doesn't seem like all of this stems from one thing like, I don't think this is just Yeah, being depressed. I don't think this is just body dysmorphia. I think it sounds like there's a trifecta here. To me, it feels like there's the body dysmorphia. It feels like the depression, but it also feels like an eating disorder to me a little bit.

Grace 1:18:37
Yeah, definitely been talked about that too, and about how it's impacted, um, in different ways, but I think that there, there's nothing diagnosed yet. I guess I could say, yeah,

Scott Benner 1:18:51
um, I think you're really gonna like that next episode that I was talking about. Yeah, I just wanted to be clear that when I just said that you're talking to a guy who graduated from high school did not go to college. And his entire, like, professional background is I was a graphic designer, I wanted to credit card collection, I worked in the sheetmetal shop and I have a podcast. So try not to look too deeply into.

Grace 1:19:14
Yeah, but you know what your education comes from the fact that you talk to so many different people, you have so much more world knowledge because of all of the vast individuals you talk to because of the podcast, so don't sell yourself short.

Scott Benner 1:19:27
Okay. I hear I'll give myself some credit. People are like, Oh, good. We were waiting for that hasn't happened. And I want to see how I can keep people like very private. My wife has an acquaintance who's been very sick. They've been going on for a while. And they usually talk by like, like face like I said it like you like you're not young and that's not how you only talk to people like through FaceTime and stuff. Like actually, yeah, let me come back to that in a second. But, you know, I keep overhearing these conversations about our illness or illness that they think I might have cancer and I'm like what is going on? On. So far, I finally just said to my wife, like, what are her symptoms? She rattled them off, and I was like, her irons low, she needs a complete iron panel. And, and she's gonna need an iron infusion. There's nothing wrong with her. She doesn't have cancer. And my wife like tells her that. And I guess she was just desperate enough that she went back to where she went and did it. She went to her doctor and gave the doctor my instructions. Okay, wow. And then she got a diagnosis, and she's on our way to feeling better. Oh, my God, I rely on it's ridiculous. I was like that woman's health has been saved by the fact that I have a podcast.

Grace 1:20:41
Yeah. Like, the fact that she was literally thinking she had cancer or you cannot.

Scott Benner 1:20:47
I was like, baffled that I'm like, How was no one seeing this? How come these tests haven't been run? Why am I the one who understands this? I really am an idiot. And I'm just like, I'm like, why is it me? You know? And now yeah. Now because it's been such a thing. And it's going on so long. And I don't know this person as well as my wife does, like, because what I want to do is I really want to speak to her and get my credit, but I can't thank you. Grace, I want to be thanked appropriately. Just like six months from now. You have some sort of like awakening, and it was from this? I want an email.

Grace 1:21:28
Yeah. You know, I'll be the first one. I probably

Scott Benner 1:21:32
I want to like, Scott, thank you for speaking to me so directly about my stuff. I've I feel better credit. Yeah, I want I want to I want that's all. I'm only doing there. So people like will tell now. I'm just kidding. I actually, I have to tell you. Um, I shouldn't joke while I'm being serious at the same time. I feel like some people can't separate it. But I love that. That we're talking about this. I really do. I got to the episode and recording with the the sex worker who should have come out before you so I mean, she's a she's a dancer, which is even something I learned. Like she called herself a sex worker and the entire lead up to the conversation. I was like, I wonder what kind of like work she does. Like, what, what am I gonna find out? Like, there was like, almost like, I walked up in the room. And I was like, I mean, I guess she could be a prostitute. I guess she could be this, like, I started going through all the things that I had. And then and this is what she does. And her entirety of her story is uncommon to my life experience. Yeah. And there was time when I was talking to her just like I'm talking to you now. And I feel the same way talking to you as I did talking to her. Like, I'm not going to record some like funeral procession conversation where we're all just depressed. And we're like, I see you have body dysmorphia. That sounds horrible. Like, tell me right, like you don't even like if we can still be people and talk so that this is relatable, so that someone might talk about it. Like, I don't care. Like if someone listens to this later and thinks like, Oh, God, he made the assumption that like, you know, lesbians do a certain thing, like, I don't care, like I want the conversation. And when I was talking to her, I talked to her on, like, on the level that she she sees herself. Like, I didn't I didn't judge her. I didn't actually have any judgment about her while I was talking, which is a major advancement for me as a human being and that came from the right, you know, I mean, so I don't know, I just think these conversations are much more valuable than people might give them credit for. Absolutely. Absolutely. I'm very excited that you did this. I I want to thank you a lot. I want to make sure that I'm not leaving anything out. But

Grace 1:23:52
I also Yeah, well, thank you for having me. I really, I enjoyed this.

Scott Benner 1:23:57
See, but I don't know if that means I just said See. See everyone I did it. I feel

Grace 1:24:07
that's what conversation. I believe

Scott Benner 1:24:09
that I had the same feeling just now as you have when you hide a Reese's Pieces wrapper and nobody finds it. You're like I did it.

Grace 1:24:15
I did it. No one caught me.

Scott Benner 1:24:17
No one caught me. Wow. You have Listen, aside of all this, and, you know, I'll let a little like it's not like it's a real secret. But I'll let the secret out of the bag like I talk to you like in the first 15 minutes not about this. Because part of me wanted everyone else to see that aside of these, like issues that you live with. You're You're just like everybody else. Yeah, you know what I mean? Like you're not like, you're not the Hunchback of Notre DOM like locked up in a bell tower and, you know, completely broken and this isn't. This doesn't happen to real people. It happens The people like this you don't mean like this is you don't I'm saying like I wanted people to understand like your, your lovely, pleasant, wonderful person and this this got stuck to you. You know what I mean? Yeah, but not by your doing Yeah. So I don't know I want to wish you luck but it sounds trite.

Grace 1:25:21
I think all the luck I can get gamma

Scott Benner 1:25:23
killer like I don't know what to say right now. Yeah. And you know, you can tell that we're winding down because now I just have what I think of as fun sex questions about being a lesbian, which I'm not going to ask you. This would only be for my own personal like knowledge. personal gain. Yeah, really would literally just be for me. So let's not do that and we'll stop now instead.

Unknown Speaker 1:25:44
Okay

Scott Benner 1:25:55
huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Kai Po pen at G voc glucagon.com Ford slash juicebox you spell that GVOKEGLUC AG o n.com. Forward slash juice box. I also like to thank Dexcom, makers of the Dexcom G six continuous glucose monitor for their longtime support of the Juicebox Podcast and remind you to head over to dexcom.com forward slash juicebox. To learn more and get started today

Hey, long episodes, I'm going to let you go just want to thank you for everything you do for the show, sharing it, listening to it, downloading it, talking about it with your doctors and your friends, etc. I really appreciate it. I'll be back soon with another episode of The Juicebox Podcast that was very abrupt but it's over now. Goodbye.

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#657 Eavesdrop On Our Call

Amanda wants to talk about her sons type 1 diabetes.

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

Scott Benner 0:00
Hello friends, and welcome to episode 657 of the Juicebox Podcast.

Back in the day, I used to talk to a lot of people on the phone about type one diabetes. I still do it every once in a while now, but not too much anymore. Recently, Amanda reached out to me, and she was looking for help. And I said, Well, I can talk to you, but I don't know when I can do it. But if you're willing to let me record it, then I can do it sooner. She said, okay, and then that's what we did. So Amanda is the mother of a child with type one diabetes. And today she and I are going to talk about her questions. It's going to be like listening in on a phone call between Amanda and myself. Please remember that while you're listening to the Juicebox Podcast, that nothing you hear, wow, I just forgot the thing. Never happened before. Wow, I'm stunned. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Or becoming bold with insulin. That's never happened before. It's very interesting.

Hey, welcome a new sponsor, won't you pretend I'm playing a bunch of like fancy music here like a carnation is happening or what was that music when they presented Simba for the first time? You don't mean play that in your head? That whole thing with it, and he said it about uniform. Alright, you get that going in your head right now. Ready? You gotta go. Alright, this episode of The Juicebox Podcast is sponsored by us med. US med provides 90 days worth of the supplies that you need. And they also have fast and free shipping. If you want better service and better care. Try us med you can get your free benefits check at us med.com forward slash juicebox. Or use this dedicated phone number just for Juicebox Podcast listeners. 808-721-1514. It's pretty cool, right? A new sponsor. This episode is also sponsored by someone else you want to hear about it. Why not? This episode of The Juicebox Podcast is sponsored by touched by type one, Learn more at touched by type one.org Or follow them on Facebook and Instagram.

Amanda 2:46
I am Amanda. I'm a mom to two boys. My oldest is let's see. He's 13. And will he'll be 14 in January and my youngest is 11. My youngest is the type one. And he was just diagnosed in May of this year. Cinco de Mayo actually.

Scott Benner 3:04
Oh, celebrate. Yeah, yeah,

Amanda 3:08
exactly. Normally, we would have been. Yeah,

Scott Benner 3:11
right. But instead of a set of a beer and salsa, you're Yeah, in the hospital.

Amanda 3:17
We were getting all educated.

Scott Benner 3:19
Let me I know, we're we're talking today for a really specific reason. But just just for a second. So we get to know you a little bit. Was there any sign of this? Is it in the family? Anything like that?

Amanda 3:30
Yeah, good question. So we do have autoimmunity in the family, but no type one diabetes. And oddly enough, exactly six days after my son was diagnosed, who's the first in the family that I'm aware of? My niece, my brother's daughter was diagnosed. Okay, exactly six days later, and she was diagnosed. I mean, I really because they saw they heard our story and her the symptoms that we saw on our son and they're like, oh, that's odd. Our daughter is this doing the same things. And so they took her in and oddly enough, she also had it.

Scott Benner 4:03
When I hear that you know what it makes me think what? I'm so disappointed in my Spanish I can make a joke if I knew what six days later was called, and then I could say de mio after it. And I was like I said, I'm like quatro, cinco, say, you know, trying to get and I'm like, I got like three more passed, and I was like, I'm never gonna make it six. And go damn it. Yeah, that's interesting. Now there's two of them. And now the whole family is on the lookout to I bet

Amanda 4:32
you got it. Yep. Cuz there's a lot more cousins to go.

Scott Benner 4:37
Yeah, no, nobody's gonna ever get to pee three times and a half a day. You're in your family ever again.

Amanda 4:42
Seriously without somebody looking with a funny eye? Yeah.

Scott Benner 4:46
Well, how's it so means not that long ago. Now for four months, maybe? A little more. How? And and we're talking today because you reached out privately for help right now. I was kind of so overwhelmed that I said, Can we just do it on the podcast? Is that? Am I remembering that correctly? Yeah. Okay. So this is going to be either interesting or upsetting to people, we'll find out, but it's going to help me. The reason I say that is because when I'm having a conversation on the podcast for you all to listen to, it's a little more. I'm more worried about the flow of it. I'm worried that you're having, you know, your part of the conversation that we're getting out what you think. But this conversation is going to be a lot of me asking questions, and then you answering the questions. And me saying stuff. So it's gonna be less conversational, but you're up for that you already know. I just want people listening to know that, you know, this is, this is basically my idea with this is when I speak to somebody privately on the phone, we're gonna record it today. So and you were mad, or you were very nice to to agree to that. So. All right, all right. Anytime, please, anytime. situation, you're gonna have to have another kid with diabetes. So we can do that again. So you don't really mean. Right? Let me get my note here so I can write some things down. Kelly bought me this little whiteboard that goes in front of me while I'm on the podcast and very helpful. Okay. How old? Tell me it's 1111 How long? Five months? Five months? What? Insulin cumilla Log? Pump, no pump.

Amanda 6:35
She has the tandem are using control

Scott Benner 6:39
IQ. Yes. Dexcom G six. Yes. How much does he weigh?

Amanda 6:50
Roughly 80 pounds.

Scott Benner 6:53
What's his Basal rate?

Amanda 6:56
You're gonna ask me, I'm trying to pull it up. Because it changes I think weekly at this point. That's

Scott Benner 7:01
fine. Arden sick right now. I have her insulin doubled. Everything's doubled. I'm barely able to keep her blood sugar under 180.

Amanda 7:09
Yeah, so that happened to me. Last week, I want to say he had a head cold and I was like, getting insulin like a mad person and he literally doubled his

Scott Benner 7:21
Basal rate. Yeah, but what is it normal?

Amanda 7:24
So normally he is getting roughly around six units a day. So he's like, I'm doing five units an hour it fluctuates a little bit between night and day time six divided

Scott Benner 7:39
by 24.25 Do you think he's honeymooning? Absolutely. Would you describe your diet as a generic American diet? Are you doing something specific?

Amanda 7:56
Oh, no. He's generic American. His let me tell you his favorite meals are macaroni and cheese. If you know anything about the Midwest, you know, Skyline chili, which most people don't like if you don't if you're not born here, but it's pasta with chili on top of it. Yeah. And cheese and crackers also and then hot dogs. And oh, almond butter graham crackers. That's like his. Those are his favorites. So really fun to control.

Scott Benner 8:27
Yeah, graham crackers are tough. Yeah, yep, they are. Okay. How Midwest are you? Like, have you ever deep fried an Oreo?

Amanda 8:37
So they do do that here. I've never had them good for

Scott Benner 8:39
you. Quick side aside, my brother moved to Wisconsin years ago. And he came home with a woman who he eventually ended up marrying one day and she brought like, you know, she tried to bring treats like something colloquial to the time of year. And she brings these kind of like gallon zipper bags full of I don't remember what she called them. But you know, when you go in the grocery store near the potato chip aisle, and there's these like, cheese balls. Like they're like these, but they're popcorn. So they're air pop balls. I don't even they're not really popcorn, you know? I mean? And then they were soaked in sugar. Oh my gosh. And she's like, I make these with my mom at Christmas. I was like, This is not okay. Like you took a you took a thing that's not food. Like it's a pretend food. Right? It's not really even popcorn. And you soaked it in Carmel or something or sugar. And and now you're eating it by the handful. And it was very reminiscent of the holiday for her. Oh, yeah. And like, right. It was like a thing she did when she was a kid. Mm hmm. It was like I was like, I don't understand what this is. It's like It's like low rent. Carmel pop corner. I couldn't supposed to be exactly Like, how hard is it to procure actual popcorn and put Carmel on it? Like that can't be it no difficulty. It was it was a step away from taking a Cheeto and and soaking it in shucker

Amanda 10:11
oh my gosh, yeah, we do a lot of things like that here where I'm from lots of things that are deep fried. And I mean, yeah,

Scott Benner 10:18
yeah. And that this is not an uncommon conversation when I end up on the phone with people who are from Minnesota, Wisconsin, you know, the top part of Illinois like that, like right there. Like we're around those lakes for some reason, like you guys can get food, right. There's no trouble with that. Is there? No. Like the trucks go to where you are? Right? They do. Yeah. Anyway, well, listen, I think we should stop talking about your son's health right now open a case of beer. And talk about the Packers until we just start punching each other would that be okay, that's a great idea. Yeah. All right. What's the problem?

Amanda 10:59
Oh, gosh, that's a loaded question. So it changes constantly, I feel like I feel like I am throwing darts and seeing what sticks most of the time. So I, I feel I've listened to a lot of the podcasts, I've read all the books, I'm the kind of person where when something goes wrong, or you know, however you want to say it, if something goes wrong, I put my head down, and I dig in, and I try to fix it. And I keep learning and trying to, you know, find different ways to go about fixing it until I have the problem fix. Well, this problem you can't fix, right? You can only manage. So I'm doing the best that I can to manage it as quickly as possible. Like I don't want to wait five years to learn all the things that I need to learn. I want to learn it right now and figure it out, which I know isn't entirely possible. But I'm doing the best that I can to kind of speed up time a little bit. Okay,

Scott Benner 11:53
that's a good answer. No.

Amanda 11:55
Yeah. So I think my issue mostly is with trying to figure out and like I said, I feel like it kind of changes day to day with what the issue is, but it's trying to figure out for me, we have a lot of times when right now he's having a lot more lows, and I would like him to have

Scott Benner 12:12
what do you what's a low? Give me a number? Yeah, so

Amanda 12:15
he'll go. Usually he doesn't go below 65. Like he'll he'll start he'll dip down somewhere between, you know, 60 and 70. And we usually catch it before it goes below that. But I would say, I don't know, two to three times a week he'll get down into the 50s. Occasionally a 40. He's a super active kid. That's the other thing. So he does competitive soccer. He does motocross. He does wakeboarding. I mean if it goes fast, and you can die from it,

Scott Benner 12:43
he does it. Gotcha. That's right. That's helpful for your, for your soul. Yeah,

Amanda 12:49
exactly. So. So he's really hard to keep up with because he's just constantly in motion. And so part of it is that I think in my want my desire to keep him from having peaks, particularly after food. So I have a lot of times where I'll do about Pre-Bolus him, and I'll get that I'll watch his CGM, and he'll start to dip. I don't really wait for the arrow necessarily, because I found that if I wait for the arrow to go diagonal, then it's too I've waited too long. And he's gonna go low for sure. Because usually when we're Pre-Bolus, and he usually is in the know, under 100. I mean, usually he's 80 to 90, I would say most of the time. So I Pre-Bolus. I wait for the numbers to go down and then put the food in. And then sometimes he'll dip down into like the 60s, which I know my Pre-Bolus time is off. But then the thing that throws me, it's hillclimb to 150, which I know in theory isn't very high. But when you're going from 60 to 150, it feels like that's not enough insulin somewhere, right? Because there's a huge swing, right? And then Hills come back down and to 80 or 90, usually within three hours if you know if he's gone up to the 150s. And sometimes he'll even go from, you know, the 70s up to 180 and then come back down. So I wonder if it's an insulin thing now that I'm seeing this out loud.

Scott Benner 14:02
Okay, well, hold on. So I got what you're saying. Let me say this, because I'm, I guess I'm fun being honest. It's not going to be completely like a phone call because I am cognizant that other people are going to listen. Right? So there are two types of people who have the nerve to reach out to me. Yeah, and the nerve because obviously this is not something I do for a living like you're not paying me and you know, so it feels like an intrusion. So there are two types of people I've got a broken down I know for sure. It is. Either someone who is in such a bad situation, that they're willing to talk to a stranger on the phone because they think that they're about to die or kill somebody. Okay? Like No kidding, right? It's that bad of a situation. Or, or it's not like me who's neurotic? It's a type a mom who gets on the phone and is like, Hey, I got a real shit show. Over here, Mike. See is 6.1 and sometimes his blood sugar 65. And we got to fix this. And, and when they start talking, I start thinking, but you're doing a really good job. And then, then we're gonna find out as we talked about it, do you know you're doing a good job? Or do you not know?

Amanda 15:20
So I think that's part of the problem. I think I know, for the most part that I'm doing a good job, but I feel like, you know, when I look on social media and things like that there are people who don't go above 120 with their posts, meal spikes, and then they just feel like it's possible for it to be better

Scott Benner 15:38
it is. And you'll find it I imagine. I mean, if you don't mind it, who's going to write and? And I don't mean because you love him and you're his mom. I mean, cuz you're mentally unstable. And yeah. But in a lovely way, so it's not a judgment. It's like you're not out like trying to kill Batman. You know what I mean? Like, there's no yeah, you're fine. No, yeah.

Amanda 16:01
Yeah. I'm all in. I'm mildly competitive, which I think is part of

Scott Benner 16:07
how clean is your toilet? Tell me right now.

Amanda 16:09
It's pretty clean.

Scott Benner 16:15
You ever seen? I can't believe I'm saying this on the podcast. But if you ever seen a pubic hair around the toilet rim and actually gotten angry at your husband then you're not doing terrible. You're doing great.

Amanda 16:27
No, but I'm not going to answer why I haven't seen it.

Scott Benner 16:30
God is your husband shaved? I don't want to talk about this right now. And you just say yes. How does he stay warm? In the Midwest? Listen,

Amanda 16:36
I work in health care. Like no, I nothing bothers me.

Scott Benner 16:39
Can you believe you just said that? It's fine. It's fine. I mean, in the back of my head, there was this little voice that just said, this is why this podcast is so good. Because we're all so comfortable together that you and I complete strangers. We are 15 minutes into our conversation.

Amanda 16:58
Yeah. Talking about my husband. tearless. Yeah.

Scott Benner 17:02
Wow. Do you think what? Oh, my god, does he do it? Because it makes it look bigger? Would it? Why is he doing

Amanda 17:07
it? I don't know. You know, I don't know.

Scott Benner 17:09
I've never really asked him that. You got it. It's not for you.

Amanda 17:13
I have no idea. I don't really I kind of do care. Actually. I prefer it.

Scott Benner 17:22
I don't even care if your kids healthy anymore. Let's keep talking. I'm just kidding. Alright, so my first thought when you tell me that you're doing a Pre-Bolus that's creating a 60. Then you're finding 150. And it's taking two hours to go back to level that my first thought is not terrible. And it's getting back to level without going low. It's getting back to level without another Bolus.

Amanda 17:49
Most I mean, sometimes that happens, sometimes it doesn't. Sometimes it has to have another bullet. Sometimes he does go low, but I catch it before it gets low. You know what I mean?

Scott Benner 17:57
So then I kind of drift back to the things he's eating then. And I'm not telling you to change them. I'm telling you that right. You know, if you're if you're going to have hotdog, for example, Have you have you put some effort in defining a bun that doesn't impact as hard? Like that's, I know, a stupid thing to say. But their breads hit differently. And if you try a couple of different like I would I would say to you, are you using bread that has no high fructose corn syrup in it?

Amanda 18:30
I honestly haven't looked. I don't know. I use wheat. Whole wheat bread.

Scott Benner 18:34
Yeah. Oh, there's another one. I'd stopped doing that two. Oh, come on whole wheat bread people think of is healthier. Yeah, but I think it hits harder than white bread. If the white bread doesn't have high fructose corn syrup in it, and it's made in a kind of certain way. I know. That's weird. And I'm not saying you can't find a wheat bread that isn't. doesn't do that. Right. But you got to look a little bit. Yep. All right. So so think about that. If you could take the impact of 30 points out of the role, then then you've got that one. Now you're 120 Maybe and you come back and maybe maybe you'll find out even then at that meal doesn't need quite as much insulin. Okay, it might not even need quite as long of a Pre-Bolus. Because, you know, I I know I've said it enough times, but it definitely fits right here. We do not think about the food enough. Right? Like they and it's I really do believe it's because when your doctor talks about it, they tell you like Be careful the glycemic index and the glycemic load of your foods here. Like I didn't listen in science, Betty. You know, why you Yes, glycaemic to me, but I mean, the quality of the foods is a big deal. And it's going to be harder, like processed food. Food that has sugar in it for no real reason other than it tastes good. Like that kind of stuff is going to is going to get in your way. Yes, but taking that out of it for a second and just thinking about the situation you're putting in insulin early enough to see a pretty significant decline as a Pre-Bolus. Right. And then how long after that is the 150 happen? After every addition? I

Amanda 20:20
would say from 45 minutes to an hour.

Scott Benner 20:25
It's always 45 minutes. Okay.

Amanda 20:28
I know. Yeah, it kind of it just starts to kind of slowly climb. It's not like a straight up rapid up, but it's a slow climb up to the 150. Is and then it's, it looks like a mountain. Do you know what I mean?

Scott Benner 20:40
Yeah. So how focused Are you on this? Like, if I said to you, you could Pre-Bolus What do we say is Basal was point two, five, you can Pre-Bolus the meal, and then take out. I don't know take out a quarter of a unit from the Bolus. And at the same time, you Pre-Bolus double his basil for an hour, that maybe you could shift some of the insulin around to try to impact your situation. Now this could go wrong. I might be wrong about this. Sure. Right. Say that one more time for me. Well, what if what if you like, let's just do round numbers and say that the hot dog launch that we're talking about here is for is four units. Okay? Am I way off on that? Or Is that about right now? Okay. And then make it 3.75 And then do a Temp Basal increase for an hour except you're on control IQ.

Amanda 21:34
And then I know so what I've been doing because of the control IQ is I will add in some more carbs and I'll extend the Bolus

Scott Benner 21:50
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add in more carbs and extend the Bolus so that

Amanda 24:36
he's getting more insulin.

Scott Benner 24:38
It's your line nice,

Amanda 24:39
extend the Bolus out

Scott Benner 24:41
lying about the carbs extending the boss explain to me the extended Bolus no control IQ you can tell it.

Amanda 24:47
So with control IQ because of the way that control IQ works, it's gonna change the Basal for me if it needs to. So rather than and I could if I wanted to I can turn off control IQ and I could mess with the basil on my own like I can, I can do a Temp Basal if I wanted to. But when he's at school, I don't like to turn it off. So I generally don't because I want it to catch things, especially if it's going high or low when he's at school. So to kind of get around that I will. So for a lot of his meals, if they have high fat in them, so typically over 20 grams of fat, I will take half of those fat grams and I'll add them into the carb Bolus. And then I extend the Bolus to cover the fat rise that's going to happen later. More than likely or like for example with the mac and cheese because I know that that's a slower digesting food. I will add in a few more carbs and what it really is, and I'll extend out the Bolus so you can put in you know, 80% up front 20% over two hours.

Scott Benner 25:51
80% up front 20% over two hours, so you can hold on a second. My daughter's texted me about her and son Kimmy. Yeah, but I'm telling her about an override for her loop. Trying to decide what I just she's like, You didn't finish the thought override in the end, forever 150%.

I didn't say forever. I didn't tell her for how long to do it. Arden has what she's calling college flu. Even though she's even though she's in so she tells me last night like very grown up in the kitchen. She's like, I have the college flu. And I was like, Oh, what is that? And she said I have a cough we all have it because we got back together and we haven't been together for so long. The whole schools coughing unless Oh, great. She goes I don't shoot. I don't have COVID I would no of course not. You'd be the best person to check with on that not a physician or a test or something like that. And then my son told me the same thing. They went back to college he said everybody's coughing he's like it's just not it's not going away. How's it go? Great. Okay, excellent. Yay. Perfect. But her insulin needs on whatever this is are unlike anything that I've seen in a while because really Arden doesn't get high with in with illness she gets lower. For you. Usually an illness for Arden's like a good is good news. We get the Turner basil down, and she just rolls through it. But she had she's been having like, Oh, my God, I've had her basil as high as like, two 2.4 an hour at time at times during this trying to keep it together. Yeah, the Bolus don't seem to change much for the food, like her insulin to carb ratio is still the same. Yeah, so fine.

Amanda 27:50
So when she has things like that happen, like if she starts to kind of creep up and gets higher, how long do you watch it before you start it? Like especially if you're doubling her Basal? How long? Are you watching it before you keep going up?

Scott Benner 28:03
Amanda? That's classic newbie question. Very good. This is one of the favorites. Scott, please tell me how long I should wait before I do this.

Amanda 28:10
I mean, I know that it's different for everybody. But if I just have a generalization.

Scott Benner 28:16
I love watching your brain torture, man. So honest answer is it's one of those things you figure out over time not to hate that answer. Okay. It's one of those things that you'll just learn to see. And then it just, it's there then, and you just go right, so I noticed her cough two nights ago, when I noticed her cough, it made me go look at her, I pulled up her 24 hour graph. And then I saw I noticed that we had you know, like one of those meal things where you think, Oh, I missed the meal. And it just gets high and it won't come down like in UFC that we were fighting with it. I got it back. But then as soon as I had it back down, it felt like it wanted to go up again. When that happened, we changed our sight because it was like two and a half days into the pump. I thought that might just be a bad sight. And then we got it level with some boluses and then that started drifting up again. And then as soon as that happened, I increased her Basal. Okay, that makes sense. Yeah, that's how I did it now. Okay, you know, 10 years ago, my answer would have been it took me six days. I thought she was right. Or blood sugar was 250 most of the time and because why? Right? Because the fear is that you're gonna like Jack in all this extra insulin and then look up three hours from now and the kids blood sugar is gonna be 40 and falling and it's gonna need 70 carbs to stop it like That's right, right? Yeah. I don't know. I just know what it looks like now. Okay, you know, and I and I did some like, you know, some testing with changing the site and then you got to give yourself some time because a new site doesn't work like magic right away. Last night, we had it. I thought we had it. And I, you know, I had her pretty, you know, everything was turned off pretty much. And a friend of hers came over, I'm guessing so they could spread around the college flew or whatever it is. Right and. And she's like, can you make us popcorn? And I was like, oh, okay, sure. So I just, I finished what I was doing. I made popcorn. And then I looked at her blood sugar because popcorns not hard on her. And I was gonna just text her and say, Hey, Bolus, and her blood sugar was like, 210 Straight up, and it just, it's like, 20 minutes before it just started jumping up. And I was like, I texted her. I said, Hey, what did you just eat? She goes, I haven't eaten anything in hours. I was like, okay, so I knew that was this. So I changed the strength of her insulin. I mean, she's looping. So I mean, for people listening, like I basically did a Basal increase of like, 100%, like, you know, instead of 1.1, an hour is 2.2 an hour. I Bolus the number. And I shut off the algorithm. So it couldn't take away her Basal. Okay, because I knew I was in a very specific situation, right? We crushed it again. And as soon as they got back down, and that override of basil ended, it tried to try to go right back up again. So overnight, I think she had basically like one and a half times her normal Basal rate. And still she woke up at like one ad this morning. So the I've been crushing the one ad for the last hour and a half. Interesting. Yeah. And now I have it. I've I think so let me look. Why 135 Diagonal down. Nice. Yeah. So that's why I just changed her override. Around I had a 200%. Now I moved it back to like, 150%. Okay, again, think of that as like Basal increase 150%. Also, it impacts corrections to but when it asked for. So you turn the loop up to 100%. And now if it if it in a normal situation in these, in whatever situation you're in, it wants to units as a correction, it'll tell you once four units because it wants twice as much as so when it told us like about an hour ago. She's like, hey, this thing wants me to Bolus like 4.8 units as like just due to Oh, yeah. Okay, because we had done a little earlier, and four units would have been way too much. And by the way, yeah, even if it wouldn't have been. She's at school, I'm not going to give her five units of insulin to correct at 180 When she's not with us. Like the next thing I said to her was, do you have juice with you? And she's like, Yes, I was like, alright, still do too. Let's watch it for 45 minutes, I figured I'd be talking to you. I could keep my eye on it. This was about the time. If she wasn't coming down right now I would have put the other two units in. So it's an interesting look into that the algorithm, whether it's Looper control IQ, or I imagine on the pod five and the future, whatever it is that you know, Medtronic is going to do.

It only knows what it knows. It can't understand the other impacts, for instance, that you buy wheat bread with high fructose corn syrup. If you do you know, or that Arden's having an illness that's impacting her Basal needs really drastically, right? It doesn't know that. It just sees it sees the settings you put in, and what the blood sugar is, and whatever, however, it's interpreting the trend. Right, right. So it's a stupid smart system. Angry? Yeah. Yeah, with this meal thing that's happening to you. Have you ever shut off the control like you and tried the same meal like manually?

Amanda 33:59
No, I have shut off the control IQ a couple of times, not necessarily for the same meal, just to kind of play around with it and see what happens when I do that and see if I can manage it better. I think the issue with the tandem in particular is that it's connected to him. And so anytime I need to make a change to his insulin needs, whether you know if I have to Bolus or change his basil or whatever, I need to go to him and take the pump from him to put in the setting changes or you know, the correction or whatever it is. And he gets annoyed by that. And so I think that I kind of back off more than I would like to because I don't want to drive him crazy.

Scott Benner 34:39
Have you ever tried my tactic? When they look annoyed? Just look at him and go Oh, shut up.

Amanda 34:46
He would probably so he and I are that we're cut from the same cloth for sure. Like we are exactly the same person. And so we butt heads a lot and so

Scott Benner 34:55
Oh fun.

Unknown Speaker 34:56
I don't think that would end well.

Scott Benner 34:57
You know when that's gonna get better in like a year. halfway he has testosterone.

Amanda 35:02
Yeah, luckily, I work out a lot. So I think I can take him,

Scott Benner 35:05
but you might have to work out to get your frustration out. Yeah. So here's my next question. Away from an active Bolus away from food. So food hasn't been in a system for three, four hours. Where does Where does his blood sugar sit stable or does it not?

Amanda 35:24
No, it totally has. Basil is really good. I've got that nailed down. So like last night, he was one of the five.

Scott Benner 35:32
One of the five overnight, huh? Okay. Does he ever sit lower overnight? Yes,

Amanda 35:38
he does. But the dumb control IQ kind of brings him up sometimes. So if it goes below, one 12.5 it'll shut off and then it kind of bumps it back up. So it's like a love hate with the control IQ. I haven't totally figured out how to work with it. I think I'm still working against it for

Scott Benner 35:55
sure. Because it's getting it's targeting like that. 112 and a half.

Amanda 35:58
Yeah, yeah. Yeah. So I would prefer I mean, I do get him sometimes to right around 80 or 90, and that's where I would prefer him to be but I'm still trying to, like I said, figure out how to work with control like you instead of against it. Totally.

Scott Benner 36:13
I'm just wondering, like, because Because point two. I mean, it's obviously honeymooning. Yes. Because point two five for 80 pounds is low. Right. Right. So

Amanda 36:26
yeah, he's getting like 70% of his insulin is Bolus in like 25% is Basil. Something like that. Okay.

Scott Benner 36:35
Yeah, that's, I mean, I know there's some people who like use that percentage like, like gospel, and some people don't care about it as much, but that's pretty wack. Like, as far as right. Yeah. Do you see any signs of attending? Have you ever had a day where his pancreas wasn't helping? No, not yet.

Amanda 36:52
Which is kind of annoying. And it's kind of all over the place to like, it'll help out more, some weeks and others and it's hit it like it. It's driving me crazy, because I swear, I really honestly feel like I'm changing his basil almost every week. Definitely. It changes between school and the weekend always buy quite a lot. I feel like I mean, he can go down to four units of basil on the weekend, compared to the six that he's been getting recently. Anyway, when he's at school more sometimes he goes up to eight units when he's in school. It just it's like all over the place. So

Scott Benner 37:22
he's more active on the weekends. For sure. more sedentary during school? For sure. Okay, and you said driving me crazy. But you've misspoke. You should have said crazier. Yes, that's true. That's fine. distinction I make with my wife. Sometimes she's like, this is making me crazy. And we all like crazier. Let's not try to let's not try to take credit for a baseline of zero because it doesn't really well, okay. So you see, you see that when he's more active, and he's less Basal when he's less active, excuse me when he's more activities less Basal when he's like that. But that makes sense. less active, he needs more basil. His Basil is definitely low for his weight. So I completely agree, obviously with that, but does the I wonder how much it's being helped with the meals as well like, because now you're trying to make adjustments. So here's the thing, right? When you wait for people who don't understand when you Bolus with an algorithm, most of them, that's fine. Most of them will take when you're posting for food with an algorithm, the algorithm has you put in all of the insulin that it needs for the for the meal, meaning the impact of the food, but it's also kind of covering the Basal need to. So loop, for instance, you put it in light of Arden has 40 carbs, we've almost 40 carbs, if her blood sugars already at then, prior to this meal, it's been achieving the 80 by keeping her Bazelon. As soon as the food goes in, excuse me, as soon as the Bolus for the food goes in. Oftentimes, the algorithm takes the Basal insulin away, because it's trying to work with just the Basal and control like you does that similarly, is that right? Yes, correct. So my point about us specifically is when it's doing that, it's only taking point two five away. Right? So it's not like in Arden situation where her Basal goes away. I lose a unit of insulin an hour. Right, right. If you're using you're losing point two, five. So the question would be, obviously the next step you tried was adding a little extra carbs lying about the carbs. If it's 20 carbs, you're telling it it's a little more so that he gets that extra insulin that's being taken away by the Basal but that doesn't help either. Right.

Amanda 40:01
No, I mean, sometimes it does. But most of the time, I would say No, it'll he still gets that, you know, what I would say as a spike up even though I know it's not like a crazy spike, but he gets that spike up still and then okay, sometimes even he goes low afterwards, and I have to catch it with food before he actually gets low cuz I can see it coming.

Scott Benner 40:22
So when you when you fake carb, you can get low afterwards.

Amanda 40:27
Say that again? When I say carb, I

Scott Benner 40:29
can let you he can get low afterwards. Sometimes Yeah, yeah. So I bet if you took if you step step back, you would notice that the he's getting low afterwards when he's eating. But I'm just gonna say better because I don't have another word better food, like, right? Less preservatives like etc, etc, whatever. And so that's an that's a situation where you're lying to the algorithm helps you up front hurts you on the back end, because on the back end, it expects her to be carbs there that aren't there. And that's why you get slow.

Amanda 41:00
Do you? You don't think that it's an insulin issue like a human long issue.

Scott Benner 41:07
I think the fake carbon with an algorithm is a good way to be low later. Yeah. Unless you're, you know, he's having macaroni and cheese with, you know, those popcorn or things that I mentioned earlier, that I think you should probably just open the humor log and sprinkle it on his head. So just like a flower just here, buddy, we need extra Yes. But with the regular meal though. Fake carbs with an algorithm with a regular meal is a is a good way to be low later, because it thinks there's more carbs in there than there is it's still pushing at it. And so you're doing it to trick it into giving it more insulin to overcome the the Basal being taken away, and it works in the beginning. And then at the end, there's nothing to prop up the insulin and boom, you go down. Now you could I mean, if you're comfortable with giving a little more carbs later for that, then it's not really a problem. It's a viable solution. But it's not. I mean, I don't know how long you could do that without making you crazy. Or you also don't want to put on weight from extra food that he doesn't want to be eating.

Amanda 42:15
You know, and I Yeah, and I hate that he does as much sugar as he does some days to try to catch lows. Right,

Scott Benner 42:22
right. So okay, so what are some of the options? I see the one out a one thing that I have available to me with loop that you don't is I get to tell the loop how long I think the food's gonna impact for. So when Arden has macaroni and cheese, you can put an impact time have five or six hours, which gives the loop the expectation that the food is going to be in there that time and it will keep kind of pressing out of them. Because yeah, you can't do that with control IQ. You also can't readdress a Bolus was control IQ. Right? You can't like I don't know, say, This meal is 25 carbs at eight o'clock in the morning at 830. And at 830. realize, oh, I should have said 30. You can't go back and change the 25 to 30. You correct? Right? You could put in a new 20 new five, but then that messes up the algorithms understanding of the timing of the food then correct? What happens when you don't? Pre-Bolus as long? Does he just get higher?

Amanda 43:25
Um it's hard to answer. Not usually because I know if I know he's not going to get along Pre-Bolus, then I add more insulin into catch what I think is going to get high.

Scott Benner 43:40
I say Oh, so you don't know what will happen because you're already trying to

Amanda 43:44
preemptively assuming that it's going to and so I'll add in more insulin to try to stop that from happening. If I know that he's not going to get a Pre-Bolus or at least as long as I would like for him

Scott Benner 43:53
to Are there any meals where he doesn't spike and he doesn't get low later.

Amanda 44:00
I mean, yeah, they do happen. But it's he doesn't eat the same thing twice, ever. I mean, he eats. He eats the same, I don't know, five, six foods, but he pairs them with different things every time. So then they impact differently based on what he pairs them with. I feel like so I can't get a real good understanding of one meal to the next because of that.

Scott Benner 44:22
You're the first mother 11 year old to complain that their kid has a variety of food choices.

Amanda 44:27
I know I know. I know.

Scott Benner 44:31
I understand God, I'm sorry.

Amanda 44:33
No, you're fine. I don't remember what I was gonna say it wasn't anything important. Probably

Scott Benner 44:37
not. I'm just kidding. Okay, so is this the time where I tell you that for a honeymooning, 11 year old who's had diabetes for four months. This is going really well. What's this a one seat Hold on? Let me guess is a one 110 Most the time doesn't really spike over 150 months. Maybe 180 Once in a while sees lows infrequently, can get as low as 65. I'm thinking, I'm thinking Hold on, hold on, I want to get a really good guess here wins last time you had to say once a

Amanda 45:17
little more than three months ago, he actually goes, I want to say next week.

Scott Benner 45:21
Oh, you don't really have one right now what is Dexcom? Now what is clarity? X calm says that it's going to be 6.10 That's my guess. Damn, I should have said it. Damn it. Damn, damn, damn Damn. Yes. So what was he when he was diagnosed, they didn't

Amanda 45:36
draw one in the ER, which really annoyed me. So he went back for a follow up two months later, and two months in, he was 8.8. So he had two months of good control plus one month of crazy numbers before diagnosis in that point.

Scott Benner 45:50
So man, to be clear, your son's had diabetes for four months, he's 11 years old, eats a bunch of different foods is incredibly active only gets into the 50s maybe once or twice a week and is a one C 6.1. Yeah, what made your comment again?

Amanda 46:05
Oh, man, I know. See, it's because I feel like I can do better with the hosts meal spikes I worked with. I've worked with a company that you talk about a lot. And I was kind of frustrated because I felt like I have a lot of knowledge coming into this just because of my background, not with type one, but just in general medical knowledge and nutritional knowledge coming coming into this. And so I felt like a lot of the education was very surface level and beginner which I do need to have reminders of those things. But I really wanted to dive in and really learn what I can do with control IQ specifically, and how I can work with it better. And I didn't feel like I got that. And so I really just I know that I can keep those piecemeal spikes from going from like, it's just the the range of the jump, right? So if he goes down with the Pre-Bolus to like 70, and he's jumping all the way to 151 60, then I feel like that's telling me that something's off there. Even though it's not a bad number necessarily to jump, you know, I understand 7080 points. That to me means that there's not enough insulin or something, something's off.

Scott Benner 47:18
I didn't mean for my question to throw you into a minor breakdown. I'm sorry. No. Does your husband ever asked you to calm down? And does that make you mad?

I try so hard not to tell Kelly to calm down. I know that there's no value in it for me or for her. But sometimes I just go.

Amanda 47:47
I know. And my type one is exactly like me. He is like a very, he's a an A Oh gosh, a sticky note. Like he writes reminders to himself. He's a he's a task oriented kid. He he's very much like me. And he's very passionate to a fault. So if there's something that he doesn't like, oh, man, yeah, you're gonna have a hard time convincing him otherwise, I

Scott Benner 48:09
have a wife like you and a son. Like you're still see. It's great to

Amanda 48:14
challenge make a lot of amazing adults someday, but right now I tell you what,

Scott Benner 48:17
they'll make great adults make a bunch of money and be dead when they're in their mid 50s from some crazy heart attack. That's accurate. Yeah. So okay, so we want to be able to Joking aside to help you feel calmer, and and help this go more smoothly.

Amanda 48:33
Or just let me know that this is not I guess that's the other part of it. Like, I don't know what normal is. I don't know what to expect. Because obviously, we're brand new at this. So I don't know, what do most people's graphs look like? Or what is what is what should the expectation be when he's honeymooning? I don't know. I'm just trying to make it the best that I can so that he doesn't have complications.

Scott Benner 48:53
Yeah, I hear you that that all makes sense. Um, I would tell you that if you're if you're eating foods that are difficult to manage, and he's honeymooning, then you don't have I don't, I don't dislike 150 for an hour after, you know, an hour after a meal that comes back down and doesn't get low. Like that feels okay to me, like, Could you put in a tiny bit more insulin? Sure. So instead of fate carving, could you have I don't know how that pump is set up? Like could you have a carb ratio? That's a little Meteor for more carbee foods and carb ratio that's a little lighter for simpler. carbohydrate. Yeah,

Amanda 49:37
yeah, you can put in different different profiles in the pump. I think you can have up to I don't know six or 10 or something,

Scott Benner 49:43
because that's what I'm thinking like, maybe you need to profile that's like, you know, sugar depth popcorn and you need a profile. It's like normal. And that way, you'll be more you won't have to lie about the carbs. You can uh, you can be more aggressive with the meal insulin and maybe that would stop the spike. little bit and keep the low way. Okay, that makes sense. Do you sleep mode overnight?

Amanda 50:06
Yeah, no, I don't.

Scott Benner 50:08
I've tried it over.

Amanda 50:09
I have and I didn't like it because it kept me too high.

Scott Benner 50:13
Oh, it made him higher. Yeah, okay.

Amanda 50:17
But I only tried it for, I don't know, two days or something like that. And then I was like, I don't want he was riding right around 120 I want to say, which again, not bad, but I was doing better on MDI, keeping him lower prior to change because I didn't sleep mood, right when I change to the pump. Yeah. And I was doing better with MDI, keeping him lower. So I knew that I could, and I didn't like him stand the 120. So it could have totally just been it was brand new, the pumping to us, it could have been other settings that were you know, I just wasn't, I don't know, maybe I need to go back to

Scott Benner 50:45
it. What's this? What's this meal ratio? Like? What's his insulin to?

Amanda 50:50
See, he gets insulin to carb. So it's he has 123456 Different insulin, the carbs based on the time of the day and the way that it's set up in his profile. So like for breakfast, he's 20 grams per unit. Lunch is the same at dinnertime. He's 21. And at 9pm, he goes to 19.

Scott Benner 51:15
Is there really any difference between 19 and 21? Probably not. No. I'm not laughing at you. I just I love watching people overthink this stuff. Tell me I know, there are people I've been like, tell me about your Basal rate Cisco. Okay. Well, in the morning, it's more aggressive. Point three from 7am to 9:30am. And then it's point three, five for an hour. And then point two for this bottom. i Oh, God. Just Just make it like point two, five the whole day and like, let's see what happens. You know, you can't get caught in trying to outsmart what you think you've seen in the past. Because especially with a with a honeymoon, most of what you've seen isn't real. Like, is it real? I know. It's not what it's going to be later. But it is what it is right now. So I mean, you're that's fine. I mean, point two 1.9 a 19. And 21. I guess whatever. Right. to freak you out. Arden's insulin to carb ratio is one unit per four and a half carbs. We're on it. So yeah, get ready.

Amanda 52:24
I know. Well, I was actually going to ask you that. What does that look like when they go from well did art in how much of the honeymoon,

Scott Benner 52:31
artist honeymoon came months into her diagnosis. And it lasted for two days and then went away? For two days of art and Denita and so on, like months into her diagnosis? Hmm. So interesting. Yeah. Who knows? So

Amanda 52:50
then what does it look like when they when their pancreas totally isn't helping you at all? Because then it's not helped. Because right now, I think his pancreas probably is helping to prevent some lows.

Scott Benner 52:59
Well, you're not using as much you're not using as much manmade insulin, which is probably limiting the lows. Yeah, like this. I'm like, this is like, this is going to get worse before it gets better at some point. Yeah, yeah. You know what I mean? But you'll Yeah, but I want to go back for a minute. Well, let me answer your question. First. I want to say about Arden, Arden got diabetes in 2006. We were using a meter that looked like it came out of a bubblegum, machine and needles. Yeah. So how long did she have a honeymoon? I don't know. But I know for sure that months into it. There were two days where she didn't need insulin. True. Okay. That's all I know. I don't think you're crazy. I think that yeah, I think you're not a clinical diagnosis. But you're welcome. And I think this, I've spoken to a lot of people, and you have all the tools you need to do this. Yeah. The one thing you're missing is consistency from the pancreas, and time to see things in a bigger way. Mm hmm. So what most people have, who succeed is the desire to do it. You have that? Okay. So you want to do it, you want to do a good job, you want to be involved in it. So that's that the the key here would be not to burn yourself out before you get an opportunity to really get in the game. Mm hmm. For now, I would tell you this is probably you're doing great. I mean, you can keep like tinkering with it and everything but just just know that. I don't know. Like, this is the part of the movie where the boats leaking slowly and you're not in the water yet, but save your energy because we're going to be fighting the shark pretty soon. Okay, like don't panic, don't panic in the boat. Let's save that energy for the fight. Because there's going to be a moment where his his needs are going to increase. And that's where you're going to have to be flexible in a way that I described with Arden's illness because basically Arden illness mimics the end of a honeymoon, we have this great degree we have this Basal need that works we have, everything we know that works is here, and then boom, snap of the fingers. It's wrong. And it's not wrong by a little bit. It's not that our Basal needs to go from, you know, point nine, five to one, it's her her Basal need went from 1.1 to two. And it'll end it's going to stop again, by the way, and I'm going to have to adjust off of that at the same time. So that that's what it's going to be like when the honeymoon like hopefully, look, if you get lucky, it'll be gradual, and you can just adjust as you go and it'll just level. But he could just wake up one day and need more insulin. Right, it'll take you a little while

Amanda 55:43
you have to start all over with figuring out how food impacts and all of that.

Scott Benner 55:48
I think the timing of your meal, insulin will be pretty similar. I think his carb ratio will change a little bit not a ton, but his Basil is Basil is gonna change a lot. Okay, so I mean, this is not I you know, I said this enough on the podcast that I this is not technical. It's not mathematical. It's not out of a book anywhere. But kids who are not who are prepubescent. I kind of think of is like point one per hour per 10 pounds. So it wouldn't be crazy. If you eventually found them at point six an hour point seven, that kind of stuff. Okay, you know. And that's where that's the biggest hurdle to me is that people adjust so slowly. So your point two, five, so when his Basal needs go up, I guarantee you, you're gonna make him point three. Yeah, and you're gonna end you're gonna feel like, you're about to kill him, you're gonna be like, 100 to go 2.3 then nothing's gonna change.

Amanda 56:47
When he was sick with that upper respiratory thing for I mean, it was a little more than a week long that I had to change his he went up to point six at night. Yeah,

Scott Benner 56:55
that makes sense to me. So, so just when that time comes, just, you know, it's a good time to find your balls, you know? Yeah, and, and, or otherwise, you're gonna spend days and days and days going from point two, five 2.3 to point three, five, and then you know, everything else is going to be bonkers. Nothing's gonna make sense. And we're not gonna sleep and five days into it, you're going to be running your head into a wall. Right? And then calling and calling a perfect stranger on the phone for help. Gosh, I know, too bad.

Amanda 57:25
So tell me this with Arden? How often are you like texting with her at school to make little micro changes to her insulin, or I mean, I know probably now it's not quite as much as it was when you were figuring all of this stuff out. But that's the other sort of hesitation that I have is that I don't want to interrupt him. His thought process when he's in school a million times to get him to bump a number down or whatever the case may be. So I'll let them ride a little bit higher when he's at school, but I don't know. Like, what do you typically do? or what have you done? Or what did you do when she was younger?

Scott Benner 58:00
Sure. Sure. So, uh, so we went through a couple of iterations. When she was younger, younger, she was using just you know what, on the pod and she would, she'd go to the nurse. You know, when she was in second grade? She'd go to the nurse's office send me I couldn't see your blood sugar back then. Like there was no share feature in in Dexcom, even when she had it. But yeah, they they give me the number they test her to I'd tell them how much insulin to put in, they'd put it in. She'd come back number of hours later and test again. And that was before. That's before CGM. Once CGM came, then okay, now you know, they could see that we worked off of that and then eventually share showed up. Gosh, do you know that I put I made the phone company or the my internet provider somebody they used to make these like Wi Fi repeaters or something like that, that were of cellular. I made them install that in her classroom for two years. Oh, nice. We Oh, so on the pod share

Amanda 59:05
you taught you're telling me that I'm the crazy one.

Scott Benner 59:07
Hey, do you like the podcast? I do that leave me alone. Okay, Jesus, God be nice. I'm already married. Amanda. I don't need this from you. Okay. I get to teach you you're on the podcast. You'll be nice to me. I'm the host. That's how all this works. Now. I'm just kidding. I'm sorry. But we did that so the back then so Dexcom share had a way to get out because the school didn't have Wi Fi right. And then when that no longer became necessary, etc, etc. At a point you're really talking about is the point where your son's out right now he's got a Dexcom it's a cheese six you can see his blood sugar's in real time. He's wearing an algorithm at that point and Arden's life. There's it goes in spurts. There are times when it just you don't have to talk to her at all. You know, and then there's times where things go wrong or you know, you're heading out the door for school when you realize oh, we should change that pump last night. You know, like then that needs Some more. There have been times where I've, you know, I've talked to her every day before gym class. And now I don't really know when she goes to gym to be perfectly honest. Yeah, but so you know, the thing you need most. It sounds so counterintuitive, but you need the honeymoon to end so that there's stability.

Amanda 1:00:20
I agree. Yes.

Scott Benner 1:00:22
And then you'll start seeing things that make sense. I mean, you know, for diabetes, right, and you'll be able to make more meaningful decisions. But for a kid who's in this situation, you're doing really well, exceptionally well. And I find that nobody tells anybody that and appreciate it. Yeah, no, no, yeah, really great. I'm like, what are we talking about here? Most spikes only to 150, sometimes 180. They come back down on their own half the time if they don't you know how to correct them. Seeing lows maybe around us activity more than anything, but we're calling low 65, which there'll be a day where you won't think of as a momentary 65 is a problem. I don't want his blood sugar in the 50s anymore than you do. And so, but that's only happening here and there. He's got diabetes, so Right. Might think that's gonna happen now. Does he drift into the 50s? Or is he falling through the 50s? It sounds like he's drifting into the 50s.

Amanda 1:01:19
Most of the time drifting. Yes. Occasionally falling.

Scott Benner 1:01:21
So. So what that mostly sounds like is that it happens and excuse me. This is it. The college flu, I have the college flu. Oh, talking so much. My throat got dry. I'm on this intermittent fasting, which by the way, everyone should do just saying. But I don't drink anything with flavor in it before my fasting window opens. Oh, okay. So the water's not quite doing it for me this morning. Oh, I wish I had something else. I could do a black tea, but I didn't have time. It's not your how's it going? The

Amanda 1:02:00
intermittent fasting.

Scott Benner 1:02:01
I think it's saving my life. Oh, well. Good. I think it's amazing. I think that I think everyone should eat in at least an eight hour window during the day. Yes. It's It's really wonderful. Like, just I wish I knew about it sooner. Awesome. Anyway, have a great episode about that. Oh, okay, hold on a second. Let's pimp the episode inside of the inside of your episode. Do it. I'm pulling up the the episode number right now. It's number 516. How we eat intermittent fasting. Okay, it's with a woman named Jen Stevens. She's got this. She writes intermittent fasting books and has a podcast about it. Interesting. Very cool. So basically, you know, for a person who doesn't have diabetes, you're by eating inside of this window. You're significantly lessening your insulin needs in the other window. Right. And that is just huge for a lot of things. And I came to realize while I was talking to her, the Artem basically does this too, because she's not a breakfast person. Okay, yeah, it's so Arden almost is like a 12 hour off eater. Like she doesn't, you know, she doesn't eat from later at night. I mean, 1011 o'clock, usually, to almost noon the next day. Wow. And that's how we know how good her her settings are. Because she's sure she's super stable, and her algorithms not going crazy most of the time. Although, again, for people like who are considering this stuff for the future. On days, when it goes wonky, the algorithm gets ahead of it. And you know, you get to live a normal, a more normal life where you're not so good. Yeah, worrying all the time about am I getting high? Am I getting low? Do I have to bump do I have to nudge now back to your original question when we were bumping and nudging? You know, how often did I talk to her? I don't know. If four, four times a day maybe it was like Hey, Bolus point two five Hey, set a Temp Basal for this. About like that. I was rudimentary, rudimentary. Oh, damn it, I went down. So I know rudimentary is the word but how do I add a y to it? Or is that not? Oh, I was really good. That's a word not a word. I was rent. I was doing a simple version of, of an algorithm. So I was Yeah, I was being a simple version of an algorithm. Take it away here. Put it back here. That's what you're all doing. When you're bumping and nudging. You're just you're being your own algorithm. A little bit.

Amanda 1:04:37
Right. So, so good. I mean, how neurotic were you with it? Like would you let her ride higher in the 150s 160s? Before you bothered her to have her do something about it? Or were you trying

Scott Benner 1:04:46
to I mean, if you're looking for my specific ideas, I treat blood sugars over 120 that I think aren't going to go back on their own and I would give her her carbs at school under 80 At home, okay, at home, I wouldn't do it until, you know, right? It's 70 probably

Amanda 1:05:05
okay. And you've always done that with her when she was younger, too.

Scott Benner 1:05:09
I mean, your years were kind of your parameters in your head. You're confusing me now with me then. Like the technology, the technology didn't exist. And my thought process didn't exist. So back then I just ran around, like with my hair on fire.

Amanda 1:05:24
Right? When she was like, 1112, she had technology, didn't she?

Scott Benner 1:05:27
Yeah. Okay. So when she was 11, and 12? Yeah, I mean, once. So what I find is to broaden the conversation. Yeah, once you've noticed what stability looks like, and you can achieve it on purpose, then a 70 doesn't scare me. If it's falling, I obviously would feel differently about it. But sure, a stable 70 Isn't by chance. When that happens when your settings are good, and you're making purposeful boluses you understand the impacts of different foods, then 70 might be a huge win. Like I wouldn't I wouldn't correct a stable 70. Now, you know, back then what I have you maybe but with like, a gummy bear or two? like I would in my mind, I would just try to make it 75. Now, if it kept trying to fall, then that's different. Right, then I might be more aggressive about it. It's super interesting in the beginning, how people want to know how much how long tell me how much tell me how long tell me how you What number do you do this at? Like, it's no, it's because you have no,

Amanda 1:06:31
there's nothing to go by.

Scott Benner 1:06:33
You have no context. No experience. Yeah, no, you have no context. And so you're scared that everything that's happening is about to be really wrong. That about right. Correct. Yeah. But so then the answer to that question is the only thing that fills that gap is experienced in time.

Amanda 1:06:51
I know which I'm so bad at that I'm an instant gratification kind of person.

Scott Benner 1:06:55
Mm hmm. Well, yeah, that's not gonna come with this. I know, Gosh, darn it. The good news is, is that you should probably try to enjoy this time a little bit. Okay, there's gonna be some big adjustments coming. And then after that, you should find some stability just in time for him to start growing hair on his

Amanda 1:07:18
right.

Scott Benner 1:07:21
This will all start over again. Oh, and then it's just gonna be a way it's just gonna be a ramp up, then. Yeah, you're bigger. You know,

Amanda 1:07:29
God was like doing some funny things when he gave us this, this disease, I think or for me, specifically, because I was a person who beforehand, I, I'm a health nut, I guess you could say. And so sleep for me was extremely important. Like, I would make sure that I got eight hours of solid sleep every night, enter diabetes. And then with diabetes, there's nothing that's concrete, it has to be very fluid. And I am very, you know, black and white for the most part and need to have an answer to everything. And this is the exact opposite. So yeah, it is testing me intentionally, I think

Scott Benner 1:08:04
last night, get me to chill out. Yeah, last night, we spent, I probably started cooking at like three in the afternoon. So I shopped in the early afternoon cooked all night, because I'm like, we're taking a bunch of food to my son at college. I don't know if that parks in here. So just for context, and spent the whole night doing is fairly exhausted by like the time 1030 or 11 o'clock came around. I'm 50. And, you know, I sit in a chair all day for my job. So I'm pretty exhausted by then. And still because of diabetes and all this, I think I was up to like 130. And then I popped out of bed at eight to do this with you so that I don't get in a car and drive two and a half hours with that food, to drop it off to my son. Basically give him a hug. Ask him how he's feeling and get back in a car and drive two and a half hours home because he has no time to talk to us today. So Oh, goodness. So nice of you prior to that, no, the point wasn't how great we are. That's obvious. That's not what we're talking about. The point. The point is, is that I have learned to deal with less sleep because of diabetes. I don't want I don't like it. But I know how to do it. Now the good thing is the algorithm should be letting you sleep. Are you not sleeping?

Amanda 1:09:18
No, it does. It definitely does most of the time. Yeah. But I mean occasionally, like when he had that cold, I had to mess with it through the night or occasionally I'll get his dinner wrong and it won't come back down where I want it to be. So no, yes, with the pump. I would say sleep is definitely much better than it was prior to getting the pump and we didn't have that long in between but and I think that the sleeplessness, really more is just my own anxiety around it. So I just sleep with one eye open more than I ever did. And I think that, you know, like things going off on my phone waking up more quickly or a little sounds outside and then I'll wake up and I'll check the Dexcom just to make sure that he's still good It's more than that really than having to actually treat anything. Yeah.

Scott Benner 1:10:03
So that happens to Kelly. Like now that Arden has diabetes. Kelly could have the flu and pneumonia, and have been up for four days straight and finally fell asleep. Then you hear a beep and she was what is that as Arden? Okay, like Adam, out of a deep sleep. Yep. Now I'm the one I opened all the time. Yeah. Now I'm normally the one that handles it, but still can't not hear it. Right. It's really interesting, whereas I don't really hear that anymore. Really? Yeah. I'm bad hearing it at this point. Though, I'm I don't mean that I can't hear. I don't mean that I can't hear the noise. I mean, that. I'm not like, what's that? Like? It's it. I just, I'm, I don't know, I have I'm comfortable enough about Arden's settings and how things go that I don't I don't pop up like a lunatic anymore. Yeah, yeah. So hopefully I'll get there one day. Yeah, you I'm sure you well. You know, it. I mean, honestly, forget, I'm sure you will. You should know, Amanda, based on the people who have spoken to in the past that this is gonna go really well for you. You just need the time. Yep. Yeah. And then you gotta chill out. You don't smoke weed or anything? You know, maybe I should. I'm saying I'm not a proponent. Like I'm not telling you to. But you gotta calm down. You know what I mean? Yeah, yeah, cuz we're not married. I can say that to you. That's true. Yeah. But let me just here, I'm gonna write down the time. That's where we're at here. So I can go back real quick and edit this out. You just gotta chill a little bit. You're making it? No, no, yeah. And everyone listening who identifies with you. You guys all got to hear that they need to just chill, calm down. It's gonna be okay. Now listen, don't get me wrong. If your kids blood sugars going from 40 to 404 140. You all need to figure something out. But if you're in this situation that Amanda's describing her, what was me 6.181, C. etc, you guys got to find a way to realize that the rest of this is experience. And that you can cannot rush getting experience. So okay. And mine only seems so much greater than yours, because of my time, but also because of all the conversations that I have. So I have like a Master's class and diabetes from talking to people. Right? The rest of you don't have that. You're trying to get it by getting immersed in your own situation, but your own situations not. It's not always real. Like you don't miss meaning you don't always understand what's happening. So you start formulating thoughts and theories based on you know, bad numbers almost. Right, you know? Does that make sense? Do you find that happening where you start, like flying down rabbit holes trying to

Amanda 1:13:01
Oh, 100% I'm very reactive, for sure. I don't let things ride probably long enough. A lot of times, because I just want to fix it.

Scott Benner 1:13:10
Yeah. Okay. Yeah. Sometimes you got to see it. So you know what to do with it? Yeah, I mean, sometimes it's kind of the key to the whole thing, like things have to go wrong, so that you understand how they go wrong. Because then once you have the tools, you know where to put the tools to stop it from going wrong. Yeah, and control IQ is I feel bad. Like, I mean, it's I've never lived with it. So right. I don't know. Yeah, you know, it's okay. Yeah, based on based on what I've learned from looping, you know, if you're, if your insulin sensitivity is good, if your Basal is good, if your carb ratio is good, and your Pre-Bolus thing, you know, you should be somewhere along where you mean to be. And then you have to understand that other piece with the glycemic load index of foods, like you can't just eat the sofa and expect something different not to happen. You know what I mean? And I'm not judging anybody. I mean, I think that's fairly obvious from the podcast, right? But right, you know, some people are, are sitting down with a, you know, a piece of baked chicken and 12, green beans and a couple of almonds, and some of you are trying to eat, you know, stuff. That's not really food. And then, right, and I'm not saying you can't figure out how to Bolus for it. I'm saying, don't be surprised when it's harder. That's right. That's all. I don't know that you're going to change his his palate when he's 11. Exactly. I would also tell you,

Amanda 1:14:40
and I also don't want him to feel like he, I mean part of it. Listen, I'd love for him to eat healthier foods in general, but part of me doesn't want to have to have diabetes be like I don't want it to be a punishment for him. And I don't want to have to say like, you can't eat this because it doesn't make your blood sugars look good or whatever. And and I want him to feel like he can do whatever he wants to. He doesn't have to be limited by diabetes. But I'm hoping that, you know, as he gets older, he starts to kind of figure some of this stuff out and wants to make some changes. But I don't know. We'll see.

Scott Benner 1:15:11
No, I agree. And I agree with you, too. And that happened for Arden. Like, I've told that story, like we left the endo appointment one time, and she just, she's really a little kid. She's like, is there anything I can do to help with this, and I was like, you could stop eating cereal until Daddy can figure this out. And she's like, okay, and she just stopped eating cereal. Rice, and I was, and it, it was the variable that was too big and too impactful for me to figure out with the amount of experience and tools I had at the time, like, I just couldn't, it was too much for me, I couldn't wrap my head around everything that was happening. So when we took away that impact, and simplified some of our foods, then I was able to see it better. And then I was able to take what I learned and then apply it to cereal. Yeah, and then, you know, that's it, because sometimes there's some of those insulin needs are so crazy. Mm hmm. Like, it's hard to make that leap when you're Bolus thing. You know, like, if Arden went to I think she went out and got like a bowl the other day like from Moe's so I don't know, it's, it's a shell. And it's, you know, they put in chicken and rice and corn and onions, and like guacamole and all this stuff. And yeah, we just randomly Bolus like 85 carbs for it. I don't know how much is in that. I don't even know how much she's gonna eat. Right? And there are times when ardonagh Wolf the whole thing down and there's times when she gets halfway through it. And she goes, I don't want any more of this. So I'm like, Yeah, okay, like, all right. So you just, you just have to get get the insulin in there ahead of it, and then work backwards off of it instead of forwards. So instead of, instead of meeting the food with the right amount of insulin, and keeping everything stable, you throw it around, you throw in an amount that the food can't possibly overwhelm. And then if she doesn't eat enough for it doesn't impact as hard, then you can address it with more carbs later or hopefully taking by taking away Basal insulin or something like that. Right. Okay. It's just kind of how I think of that, that bigger stuff, because I would rather I'd rather be ahead of it than chasing it. For sure. Okay, yeah, I get that. So do you have any questions? And don't be don't be like, if you have questions, now's the time. Let's go through them.

Amanda 1:17:30
I did write some things down. But I actually think that we were looking through them. So for you, if she if you get a Bolus wrong, and she does start to go above the number that you want her to be at how long do you wait before you address it with more insulin to see if it's because there's a lot of times with the CGM where it looks like I'll get a straight arrow up and then the next reading is a diagonal and it only bumped up by another two points or something. Do you know what I mean? Or even with the lows, where it looks like it's gonna go straight down? And then the next reading? It's only two points, lower and diagonal arrow and it kind of tricks you?

Scott Benner 1:18:10
Yes. So you're probably in a situation where it's possible that the pancreas is like, oh, gosh, what's going on here somewhere? Yes, outside of that scenario. When I first started doing this back in the day, it was 45 minutes and an hour and a half is where like my inflection points kind of where now I can see it. So there's a sharpness to the rise on the CGM. That indicates to me this isn't coming back. Okay. And then I just put in more. I got it. Okay. Okay. But it's, for me, it's on the I use the three hour graph. And I look at the, for what you're asking about specifically, I look I look at about the last 10 or 15 ticks, I guess. Yeah. And then there's a sharpness to it. That just says, oh, hell we missed, and you learn to see what it looks like. Okay, and then I apply an amount of insulin that I usually randomly choose. Yeah. Okay. Fair enough. Yeah. Sorry about that. But it's, you know, excuse me, it's usually some multiple of her Basal rate. So that if I have to bail on it, so if I've made a new Bolus and and five minutes later, you get that thing where like, it just stops and levels off. You're like, Are you kidding me? Right, like so some. Sometimes I'll try to trade the basil for the Bolus, like I just put in this one unit Bolus. And then it suddenly levels off. I might shut the basil off for half an hour just to try to like horse trade a little bit with the gotcha. But that's also a slippery slope. You don't want to be finding yourself doing that constantly because cuz then there's bigger,

Amanda 1:20:02
because the timing of those two things is probably not exactly in line with each other.

Scott Benner 1:20:07
No, they're not. Yeah, you're just doing your best to try to make a couple of overlaps. That'll stop a low later. Yeah. But I've also done that and shut off our basil and five minutes later texted her back and been like, oh, hell put the Basal back on. Sorry. Yeah. You know, I've also I've also made incredibly aggressive policies that literally 30 seconds later, I'm like, pushed up pushed up. Just kidding. It's not no, don't do that. When please respond. Damn it. And then I know, I inevitably get back a text that says, Too late. And I'm like,

Amanda 1:20:44
Oh, that's good to hear that you do things like that, too?

Scott Benner 1:20:46
Yeah, sure. It's not a I mean, did you think this was a perfect science?

Amanda 1:20:51
Yeah, I don't know. You got it down pretty well, it sounds like,

Scott Benner 1:20:54
um, yeah, I do. But again, it's time it's willing to, it's willing to be able to twin to talk about it like this. Yeah. Like, I think this conversation is really cool. Because this is the exact kind of stuff that I think people talk about privately, they would never say out loud in public. Right? Because it flies in the face of most things that most basic concepts that you mentioned earlier that your doctor gave you that are really not very helpful. Once once you get into the minutiae, right, you know, like, exactly count your carbs, you know, put the insulin in. Think about what they really tell you, right, like get, count your carbs, put your insulin in three hours later, check your blood sugar, see where you're at?

Amanda 1:21:40
That's it. I haven't talked to our endocrinologist. I haven't called them or talked to them for advice on changing anything since our last appointment over three months ago, because I realized that they were just guessing they were 100% guessing.

Scott Benner 1:21:51
Okay. Yeah, yeah, they're like, ah, you know, so you're getting low every night at 2pm. A 2am. Let's turn your Basal down at 2am. Like what? Yeah,

Amanda 1:22:02
yeah. And I saw it like, I knew I could tell that they were totally just an educated guess at that. But I mean, just guessing. So I'm like, Well, what I'll guess like, oh, I can do that.

Scott Benner 1:22:12
Listen, I'm gonna say something, Amanda, that maybe won't rub people the right way. And I'm not just talking about the medical profession, but in general, right now. World goes to hell in a handbasket. Right? They're coming in by planes, tanks are crashing into the shores. How many people you hunker down with who you think these are the people who can get me through? How many do you know?

Amanda 1:22:33
I'm one?

Scott Benner 1:22:35
Yeah. Okay. So now you're randomly calling a random doctor's office that you went to, because the hospital that you ended up to with when your son was diagnosed, told you about this endocrinologist? And you're talking to the lovely person that answers the phone, who's 20 years old, who then moves you on to the person who's been out of school for three years and doesn't have diabetes? And you're asking them a pointed question about a Basal insulin. Right? And even if they know, how are they really going to know they're not there? They don't have this, like this thing that we did that for this last hour. They don't have they don't have this critical thinking around the minutia stuff. Right. So it's unfair to them on top of the point that I don't know 10 People who I would trust with my life, sadly, and I bet a lot of people and I'm not saying you're all prop like people, I've met her like, I just don't know you well enough. You know, like, this is a weird thing to be asking someone. So I joke about me being a stranger from the internet. But how many hours? Have you heard me talk about diabetes? Countless a lot. Right? So yeah, I've listened to a lot. Yeah, I'm not really that unknown to you. You know, exactly. Right. So. And I'm not saying there aren't people out there there, obviously. I mean, Jenny's like, you mean, I've spoken on the stage with me. And I felt like I held my own. You know what I mean? But I also wish, if you said to me, Scott, I can ask you or I can ask Jenny about something I might be like, I might ask Jenny. You know, like, I don't know. Yeah. And there are times when Jenny will text me and be like, What do you think of this? And we'll talk back and forth sometimes. And I know, I know. She respects me. I know. I'm in that space a little bit. Yeah. But who else is there? Really? It's not even even the doctors. I mean, I don't know how it works in your health system. I I'm not sure I could pick Arden's endocrinologist out of a lineup. Right? Not kidding. We never see her ever. Mm hmm. And her nurse practitioners, you know, terrific, but I don't remember the last time she gave us any like, pointed advice about insulin. Sure. You know, she says things like I'm concerned. They say I'm concerned about this low here, which I'm starting to think isn't is a liability thing. Yeah, because if you go that's not a low that is a compression low they go okay. And that's it. We're done talking about it. Now. You I think that's liability that they have to point it out to you

Amanda 1:25:03
for 100%. Yeah, I'm sure it is right. To be able to chart it.

Scott Benner 1:25:07
Yeah, I think that's exactly what's going on. So I don't know what's happening for like, I mean, I've been in appointments where I'm not sure if I'm being like, if that's the conversation we're having, cuz it's me, or this is what the conversations are like. And I would tell you that if I wasn't me, that those conversations wouldn't be helpful. Yeah, you know,

Amanda 1:25:29
it's not Yeah, it's they're very, very generic. I feel like but I mean, I understand it.

Scott Benner 1:25:34
Yeah. Your Site feels good. You're doing great. Good job. Yeah. Blah, blah. Like all right.

Amanda 1:25:39
Right. Collison, urine, DK, or

Scott Benner 1:25:42
Yeah. Can you tell me how many minutes after I miss on a Bolus? Should I readdress this three hours? Oh, great. Perfect. Don't stack? Yeah, don't stack your insulin. Why? But I mean, it's a bunch of years. 300 You can't stack your insulin.

Amanda 1:25:58
Right. Right. Yeah, exactly. I have one more question for you. And it's probably another more of a neurotic question, but I'm going to ask it anyway. So the difference between changing like doing a Temp Basal adjustment versus an extended Bolus when would generally speaking, why would you use one or the other?

Scott Benner 1:26:22
I like a Temp Basal. Let me get some water. I like a Temp Basal in a karbi. situation. Okay, so if you're going to, you know, if it's I don't know, Thanksgiving Day, and there's food out on tables all day. If your Halloween Yeah, well, Holly last sell sugar, a lot of simple sugar, that's harder to think about, you might get a lot up and down at Halloween, if you're too aggressive. On a day where you're running around, and somehow you eat pizza for lunch, and then grab Chinese on the way home, like you don't like that kind of a situation or you're just having a meal, where, you know, one hot dog turned into three hot dogs, and there were chips. And there were all this, I might create a blanket of basil overtop of the timeline. That is the impact of the food. Okay, yeah. And, you know, just to, you know, because in my mind, the basil is sort of like a blanket that's holding down on your body's function, right? Like, it's, let's be clear, Basal is just to control body function, right? It's not for food, but you can maneuver you can manipulate it and you know, to use it for food. So if your kid needs point two, five, to control his body needs, right. And then suddenly, he eats a bunch of hard or long impacting foods, I might then want that pressure that's coming down from the Basal to be heavier so that when that food starts pushing up, because it's going to push up over such a long period of time, I like there to be a more even coverage of heavier Basal for something, okay? Because, because when you Bolus for it, you're going to get that, you know, nothing happens then an influx and then, you know, that's about it. Like right like the insulin peak. So you you've got that pressure at one time. I like to see it across the whole thing.

Amanda 1:28:24
Okay, so then we went about an extended Bolus and

Scott Benner 1:28:27
Bolus. I don't love extended Bolus, but if I was gonna use them, I would use them for you know, a thicker, you know, thin crust pizza, not so much. But a thicker crust pizza that has, you know, maybe meat and cheese in it. And so you know, you're gonna get that fat and protein rise later. But you could also just do the good also listen to the episode about the fat and protein rises and just make a pinpoint Bolus for the fat and protein later to or for the fat later to excuse me. And I used them a lot at school before to Pre-Bolus when her blood sugar was lower. So

Amanda 1:29:11
if Oh, right, okay, so give a smaller percentage of current and then yeah,

Scott Benner 1:29:15
so Arden's like, you know, it's time to Bolus for lunch. And we need some sort of a Pre-Bolus butter, blood sugar 78 And she's got 45 carbs in our lunch, and that's gonna end up being you know, 11 units of insulin like not super comfortable giving Arden 11 units of insulin 10 minutes before social studies ends, and then she's got a walk through the school and then you're hoping she starts to eat on time, etc. So, if that in that specific scenario, if she was like 78, I might do the 11 units 0% up front, the rest over 30 minutes. So that these 11 units are going in pretty aggressively, but not like a Bolus over 30 minutes. So then To 15 minutes later, when she sits down to eat half of those 11 units are in. Right. So I do sort of get ahead of it like so I've used it like that before and with different breakdowns like, you know, if she's 85, I might do 20%. Now the rest over a half an hour. So that's a way right, I'll use an extended Bolus in a way that it's not really meant to be used. I'm just, I'm just using it as like a time release Bolus. Gotcha. Right. That makes sense. Yeah. But I mean, those are, those are some of the places you might do it. But they're also very hit and miss. And they can be they can be frustrating while you're learning how to do them. Yes, you know, so I agree Friday,

Amanda 1:30:45
I tend to use the extended Bolus a lot. Because with the control IQ, I turn that off, and I just don't have competence, especially when he's at school that he's gonna respond quick enough to fix something that needs to be fixed. So I just use an extended Bolus, as opposed to a Temp Basal a lot when he's at school.

Scott Benner 1:31:05
Okay. And it works for you.

Amanda 1:31:08
I mean, it seems to right now, anyway. Yeah.

Scott Benner 1:31:11
Well, I mean, listen, in the future, it'll just have more basil, you know, a stronger basil. And so I don't see why it still wouldn't work from what I understand from talking to people. The bigger problem with to generalize boys, isn't it? You know, obviously, the, the hormones are going to be one of them. But that actually might not happen till they're a little older, as as drastically as like, unlike the girls where you could see it, like 1112 13 years old, and they're, the bigger problem is when boys are just, you know, classically boys? Yes. And they're just like, I don't care. It'll be fine. Or I'll just run through the wall. Like that kind of stuff. You know? Yep. That that might end up being the more challenging aspect of this at some point. Mm hmm. So yeah, I don't sure I can see that. Yeah, I think boys will be boys is a thing for some sort of a trail of real. Yes. Yeah. It'll be, it'll be fine. Don't worry about it. Yeah, when my wife and I were first married, we took a road trip to Washington, DC, for navigation systems. And before like it, like you needed a map, if you wanted to know where you were going back then. And we get in the car, and it's nighttime, like who went on a Friday afternoon after work? And they were driving and it gets dark. And she's like, you don't have a map? And I was like, no, she goes, How are we going to get there? I'm like, It's Washington, DC will drive south on I 95 Until we see a giant white building, and then we'll get off the exit and look for the streets of the hotel. Right. And she was mortified by that. Like, I we arrived at the hotel, there's nothing eventful about the trip whatsoever. And she got in the bed. And I was like, are you alright? She's like, I'm just I'm very anxious. And I was like, about what? And she's like, we didn't know where we're going. The whole time. I said on the whole time. We knew we were going to Washington. I was there's this main road. It's, you know, it leads right to what there's a giant white dome. It's lit up like we couldn't possibly what about signs? Like you don't think at some point, there's going to be a sign that says Washington DC. And, and that was my extent of being prepared for that. And I'm trying to say that that theory wrapped into a 14 year old China trying to figure out how to Bolus before he goes out in the woods and rides a motorcycle might be fun. So

Amanda 1:33:34
yeah, yeah, exactly. Yeah. That's pretty much my life. That's where I'm at.

Scott Benner 1:33:40
Alright, was this in any way helpful to you? Absolutely. Really? Okay, good. Yeah.

Amanda 1:33:46
Yeah, really? Honestly. I'm glad. Yeah. I mean, I think it's helpful for me to hear that what what we've got going on is like, it's fine. Because you don't see. I don't know, I don't you don't know what you don't know. We don't know a lot of other. Well, I mean, so we do know, obviously my niece but they're just as new to this as we are. And then the only other person that we know that's in my son's class is was diagnosed three months ahead of Connor, my son, Connor. So you know, we're all trying to figure it out together. And outside of that, I don't really know anybody that's been doing it long enough to know what's to be expected.

Scott Benner 1:34:17
Yeah. Hey, I want to make a little PSA right here. Don't everybody send me a note and want to do this? Okay. Please. Thank you, right. Yeah. No, no, no, Amanda, that would, but Amanda doesn't know about herself is she was the right blend of neurotic and normal for this conversation. And I figured that out while I was talking to her. So I didn't think you weren't going to talk over me the whole time. You were going to be okay with me doing a lot of the talking. And I knew you would be good for this. So also, here's the thing. If you feel like oh my God, I need this conversation to a man this conversation will go exactly the way your conversation will go. So there's nothing particularly special or that much difference between how Amanda's feeling and how you may be feeling. If you're right now saying, oh my god, this is my life and listening to this. Yeah, pretty much whatever we said is going to apply pretty well to you. Yes, yeah. All right.

Amanda 1:35:14
I appreciate it very much.

Scott Benner 1:35:16
Oh, it's my pleasure. It really was. I don't want to thank me. I thought this was terrific. I thought it was great for a podcast too. And I was happy to help you. You know that I wanted to do this because we're doing it on the day. I don't usually record. Yes,

Amanda 1:35:29
I do. And I really appreciate that. No,

Scott Benner 1:35:31
again, you're not supposed to say you're not listening. You're not supposed to thank you for it. I'm just it's an indication of how much I wanted to do it. Because if I didn't want to do this, we definitely wouldn't be doing this today. That's just true. Okay, so hold on. I'm going to ask a couple more questions about your husband's shaving but I want to do it privately.

First, I want to thank Amanda for coming on the show, and having this conversation in front of all of you. And I'd also like to thank our newest sponsor, US med. There's no need just no need for it to be difficult for you to get your diabetes supplies. Us med.com forward slash juice box or call 888-721-1514 I'm so happy to have an advertiser with a phone number now, because I'm like doing an impression of like, infomercial like voices from when I was a kid 888 Anyway, oh, touched by type one.org Don't forget them. Great sponsor wonderful place. Go check them out. This was kind of a long episode, so I won't dilly dally here at the end. I'll just say thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. And I guess I will note that a lot of the stuff that I talked about in today's episode is it exists in detail in the diabetes Pro Tip series that begins at episode 210 In your podcast player, or can be found at diabetes pro tip.com, and juicebox podcast.com. Also, if you're See, I'm going online now, I know you're laughing at me, I don't care. Also, if you're in the private Facebook group. There are these great lists of all the series in the podcasts, the pro tips being one of them. You kind of go up to the top and there's a featured tab. So first of all, it's a private group, you're gonna have to answer a couple questions to get in. Once you're in there. You're going to be with about 23,000 other people who are using insulin just like you great place completely free, featured tab lists of all the series, including the pro tips. Now I'm really leaving goodbye

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#656 Defining Diabetes: Barriers

Scott and Jenny Smith define diabetes terms

In this Defining Diabetes episode, Scott and Jenny explain barriers.

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

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

Scott Benner 0:00
Hello friends, and welcome to episode Wow 656 of the Juicebox Podcast. That number took me by surprise

today, today's episode defining diabetes with Jenny Smith is going to be just a little different than usual. First, Jenny and I are going to define a term, we're going to talk about barriers. Jenny and I are going to talk about some situations where you might need barriers between your medical devices and your skin. And then I'm going to read to you a ton of suggestions from the private Facebook group about the barriers and creams and wipes and all the stuff that they find helpful. little bonus content on the end of a defining diabetes episode. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. Don't forget that Jenny Smith does this for a living you can find her an integrated diabetes.com. And if you're a US resident who has type one, or is the caregiver of someone with type one, I would personally appreciate it if you took the survey AT T one D exchange.org. Forward slash juicebox.

This show is sponsored today by the glucagon that my daughter carries G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. Alright, Jay, so my only my only only experienced with this came when Arden was about eight years old. I haven't thought about this in a while I wrote a blog post about a really long time ago. But she was starting to get irritation under her insulin pump. Okay, and I was at my wit's end, I really didn't understand that I wasn't as entrenched in all this back then as I am now. The Internet wasn't as helpful as it is now. And I I didn't know what was going on, right. So I stand there one day like thinking I swear to you like just standing thinking. And I was, I don't know what happened was rubbing my fingers together while I was thinking. And I was like, wow, my fingers are so dry, like dry and cracked. And like, why are my hands dry and cracked. And I thought about I thought about it, I was like, I am touching alcohol constantly. Right? I'm cleaning Arden sites, I'm cleaning her pod sites, I'm always my hands always behind them. And that sent me to the internet, where I did some Googling and learned that in Europe, I believe this a long time ago. So you know, don't hold me to exactly where but the standard of care is that you don't prep sites with alcohol, right? You prep them with I forget what they do a mild soap and warm water or something like that. And then just dry the site, dry the site. And I switched to that and art and stopped having irritation. And my fingers aren't crusty and hard anymore. So that's how I fix that. Now Arden obviously didn't have a real significant reaction because the alcohol I think was just drying her skin and then making her more susceptible to whatever was in the adhesive, which I imagine the adhesives probably made out of something completely different now than what it was made up back then. But that was the first time I thought about it. And then in the first like 20 episodes of this podcast, a woman came on. I can't even remember the kid's name still Mason. Because this kid had, like he put on any kind of medical graded he's of and his entire body broke out. It was horrifying, right? And but she wanted to use these things. And this woman just man, she just figured it out. Like she built a concoction of barriers and wipes and everything and made it to this kid could wear it. But it's a world I don't know much about so I'm going to ask you like how many people do you think out of 10 or 100 have to put some sort of adhesive barrier on is it many?

Jennifer Smith, CDE 4:25
I think that a an easier estimate is probably out of 10 I'd say that there's probably one person out of 10 Give or take that probably has experienced some type of adhesive irritation at some point. So like you found you removed something that was essentially just it was literally taking all of the natural oils out of the body. That's what alcohol wiper Alcohol does, right? It just it's a degreaser it takes everything off. So does it clean your skin? Sure, but it cleans it almost to the point that then when you're putting something else on top of it, that kind of like locks in that dryness and is sticky, you're irritating skin that's now dry, and you're doing it over and over. It's not just like one time, right. So sometimes it's cleaning up enough of what you're doing that can take care of it. Other people though, definitely have to use a barrier of some type. I mean, I've seen rashes that are very just specific, right around the edge like the the underneath the adhesive doesn't seem so bad. But it's like right around the edge of the adhesive. That gets irritated enough that it almost looks like the pump site is still there. Or the CGM site is still there, even though it's not. Some people have it bad enough that it it blisters, like horribly like blisters, like almost like you'd see in Oh, what is it leaves of three, let it be, you know,

Scott Benner 6:13
poison ivy or poison ivy,

Jennifer Smith, CDE 6:14
poison ivy, I couldn't like I knew the little rhyme but I couldn't think of the plant like poison ivy, poison oak, which I actually had, I had one of them, they didn't know which one it was, but I had one of them in the blisters. And it's so itchy like unbelievably right. So some people get that degree, and it takes forever to heal. And when you have I mean any kind of body, but little tiny bodies have such little real estate to begin with. That if you've got this big inflamed site on one area that takes an entire month or six weeks to heal up. That's now you're sticking it someplace consistent enough that you can start to cause problems in another place just because you're not rotating well. Right, right. So I mean the kinds of barriers there are some, like hypoallergenic types of barriers like tegaderm, there's another one called IV 3000. It's like a really, really clear thin that you kind of cut a little hole in where the infusion set or the sensor is going to go into the skin. Clean the skin, put that on top of it, put the pump site or the in the in the sensor on top of that. So really, it's adhesive is sitting on top of this barrier not on your skin. That works for some people. Other people as a barrier can get away with just using like a topical kind of like a spray Benadryl let it dry, put the side on top of it or a spray floaties can spray it right over their skin same thing and that can be enough. So I've seen I've seen everything that we

Scott Benner 7:54
have to be a little bit so I went to this so after this this lady came on and and she actually the kid's name was Henry. That makes me feel bad. Why did I say Mason? I don't know. Damn, I was so confident when I said Mason. But the woman's name was Rachel and after she was on the podcast I actually asked her to write a blog post which I still have on the on the face of my of my my website because people use it so much. But here here's this is from 2015 But she washed the area with warm water and antibacterial soap Do not use alcohol. Completely dry the area. She applies one puff of Flonase she says you can sweet talk or demand this prescription from your endo if it's necessary. Then she applied a thin layer of have Alon barrier cream that she got from Amazon it's made by three MC a V i l o n again this is like eight years ago. Then she says she applied a layer of tegaderm HP 9534 HP not just tegaderm and I'm like boy this lady dug deep you know

Jennifer Smith, CDE 9:00
and the ticketor comes in multiple sizes too. So if you're looking for it know the size of your site that you want to cover because it comes small to big she listed

Scott Benner 9:09
six by seven centimeters. Place the inset through the tegaderm HP. Then she said they placed another layer of tegaderm on top of the pump to provide an extra layer or barrier for the adhesive of the detached inset. Not sure what she means there when wet blow dry sight with a hairdryer on a cool setting. Apply prescription hydrocortisone after removing the tegaderm hp on at on an old site and she only removes extra adhesive with something called Callan doula oil. Yeah, so she this is I mean, if anybody wants to see it's this this little kid. His face is red. He's got splotches all over him nowhere near where his medical adhesive is either. He was just allergic to this.

Jennifer Smith, CDE 9:56
I had a gentleman who emailed me an adult diagnosed as an adult, who all of a sudden for some reason, started having irritation around his sensors, like had been using them forever. And on a business trip was itchy itchy around the site and he removed it. And it was like that blistered that blistered level of skin. And then he was like, Well, maybe it's just the site, you know, maybe it got like, maybe I didn't clean it well enough. So he put a new one on, and by the next morning, he had irritation, same thing around the skin. And the funny thing is, it went on and into that week, places up the same side of his body where he had no sights at all sounds like the same little boy. He had, like, Welty blistery places on his body that had not even been touched by a site yet something

Scott Benner 10:51
else. It's terrible. If anybody's interested, I can't believe I'm saying this, as we're in the six hundreds now, but it's episode 14 of the podcast. Wow, that was a long time ago, Scott 2015. And

Jennifer Smith, CDE 11:05
she's got a lot of really awesome. I mean, all it sounds like she's gone through like, all of the products, the only thing that that we would usually caution is what we call green housing, a pump site, or even to CGM

Scott Benner 11:21
because of humidity. Right? Right. You

Jennifer Smith, CDE 11:23
would, in fact, if I'm glad it worked for her again and have one great, we don't recommend it, though, because the humidity or any moisture underneath that could actually create more irritation underneath yet. But again, her story, it works for her and her son, so that's great. Yeah,

Scott Benner 11:42
I mean, it's a it's a real indication, at least to me that if you I mean, try hard enough, get the right information, get a little lucky, you might be okay with it. But I see people who just persevere and there's no need for that, like, there's some of these barriers are just too available and work too. Yeah, you know,

Jennifer Smith, CDE 12:00
well, and the one thing I was gonna bring up to about this is that in terms of when you might see a seasonal need to use barriers versus other times of the year that it's not necessary at all. So you know, if that's something that you're noticing, don't think that you're crazy, you know, once you get into like, fall and winter, your issues go away, or once you get out of the dry season and you get more into summer, it goes away. It could certainly just be seasonal, based on kind of the humidity and nature of the air.

Scott Benner 12:31
Yeah, well, okay. Well, I'm, I'm glad we talked about this, I'm going to put you know what I'm gonna do with this one, I'm going to, I'm going to do some work, Jenny, I am going to go back to the Facebook group. And I'm going to ask people for what they're using modern day here. And I'm going to put the list at the end of the podcast. Awesome. All right. I mean, I'm busy, but I'll do it. Thank you very, very, so helpful for everybody. Well, I'm looking for a pat on the back here because this is extra effort. But I think it's not just kidding. I know I think I think it'd be interesting because because this article that she wrote is so old to hear if people are found updated stuff and maybe get a good list. So I think it's a great idea. All right, awesome. Thank you. Yeah.

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Don't forget there are a ton more defining diabetes episodes right there in your podcast player. And at juicebox podcast.com. You can also find the diabetes Pro Tip series and many of the other series. All right, wherever you listen, you might want to check out the private Facebook group for the Juicebox Podcast. It's called Juicebox Podcast type one diabetes. And please consider taking the T one D exchange survey AT T one D exchange.org. Forward slash juicebox right back to the episode now. Maybe I'm going to read people's suggestions in different voices. Each suggestion gets a different voice. I'm a man of 1000 voices are you ready

so I put a post on the private Facebook group after Jenny and I recorded this. The post was simple it said barrier wipes creams and patches. If you have a recommendation, please leave it here. Your product or methods may be used in an upcoming episode. Now I'm going to get through this as well as I can, there were 187 responses, I'm quite certain I won't be reading all of them to you. Alright, I'm sorry, there's not going to be any attribution to the people who left these because it'll make it'll just make me crazy to try to add the names. So you're ready. Smith and Nephew skin prep, which is a protective barrier wipe available on Amazon. In the past, we've used that company's version of adhesive to put overtop of Ardens CGM. Currently we're just using the overlay that Dexcom provides. Somebody here says they use expression med patches. This person says what works best for them before a pod they put on kavalan spray as a barrier. And for removing the pod Lift Spray and then lift wipes. They say they work amazingly well. They use dream cream from Lush on the site where the pod was afterwards and then somebody came in and said I love dream cream. I don't know what dream cream is. But two people here think is pretty cool. Someone here says they're using baby oil to help the devices come off to loosen up the adhesive and they're using a adhesive called HyperFlex which they say is available on Amazon. This person says they use two layers of Flo neighs base and then skin tack that works well for them. Here is a person that says wipe site with alcohol wipe. Spray Flo neighs. Dab one skin tag placed x comma on the pod. Then they put on Alexa cam patch for Dexcom or a pod pal for Omni pod. When they have a skin reaction, they use hydrocortisone to clear it up. Brandy Johnson here to make a good point. I'm going to read it for you. She said the one thing I'm seeing here is that there are two different issues some people in the thread have a typical mild allergic reaction and they can get away with less prep, but others have major reactions that are almost like chemical burns. She said hers was the ladder and the only thing that worked for her was to completely cover the device adhesive. Bandaid brand extra large size, Hydra colorectal bandage on the skin and then the device on top of that this next person says that when you're dealing with type one and eczema, a cloth feel adhesive patch works better than a latex feel adhesive patch. There go to is something called simp patch or sim patch Excuse me. And they also use the Smith and Nephew remover wipes which is a good company and I've used some of their products in the past as well. Becky says that she cleans sites after the device comes off with something called my cellular my seller water M IC e ll AR to remove the residue. This person is suggesting something called LaRoche Posey Lipikar balm. Wow for the rashes says that their child gets horrendous dry cracked skin in the winter. LaRoche Posey Lipikar balm AP plus intense repair body lotion sounds like I'm doing an ad for it. I don't even know if it works. Here's a vote for skin tack for a barrier and then they use a stay put adhesive for Dexcom they've bought peels for fun but they don't last as long they say not as long as the stay put brand

here's another person says floaties is a barrier for preventing a rash but you really have to let it dry out where the adhesive won't work well. They also like skin tack wipes and tech away wipes as a person here talking about how hype effects comes in a two inch roll. That looks like another Amazon thing. Here's someone talking about a wipe they use to prep the skin. They say it's like alcohol more portable than soap and water dries quicker they don't need Flonase brava skin barrier spray is what they're talking about brava skin barrier spray they're also talking about something called BZ K antiseptic, antiseptic tablets but you guys use a whole bunch of stuff. I have to be honest I just wipe it off with some warm water boom we slap that thing right on there I'm starting to feel lucky that we can do that. Um Let's see what we got here. Smith and Nephew tincture of benzos pump spread A liquid bandaid spray and it worked really well they said and they've added the Smith and Nephew but haven't tried it yet. Some people said they use googan for removal. I didn't know that was for people. Is it here's one for next care mmm 11803 spray liquid bandage. This person says they remove the adhesive afterwards with an alcohol wipe hmm I personally don't like using alcohol but to each his own. This next person says kavalan spray is the best. There are T one is elite allergic excuse me to all adhesives. Even breaks out from skin tack Flonase helps them but they prefer the calculon spray. This person says for for a barrier they use try my Jesus Lord Tria, MCI n o l o n e spray. Creams these baby oil Aqua four and Vanicream patches they love expression med patches and for removing adhesive they like baby oil. Sometimes yunusov But they don't like the chemical smell. I'll tell you what that yunusov works really well but it does stink. Stinky stinky stinky. Like after you use it you almost have to wash and wash the area so you don't smell it. But it is what we use here yunusov When we use it I don't really don't really use that often. Someone here is talking about a liquid adhesive called Marisol three M kavalan wipes for tea slim antibiotic cream for after the change. This person says they've tried several different brands of over patches. By far the most sticky and long lasting has been Lex cam adhesive waterproof looks like they make a Dexcom G six adhesive this Lex cam company another Amazon item wow there's so much here you guys are pretty cool to answer these questions like this person says they're allergic to expression med patches. And they go through a whole thing here skin tack is a possibility currently they're doing a clean slate with hypoallergenic soap dry Flonase times to dry Smith and Nephew dry hype effects sugar under patch then the Dexcom and hype effects on top and acute sugar patch for design so Alright, well that's nice. Wow, this she put a picture of her kid's arm here. It's really terrible. It he said he's uh, allergies are just nasty sometimes for people. Okay, Cavalia and cream tegaderm. Alright, I'm getting pretty far down the list here starting to see a lot of duplicates. Although here's a new one. All care protective barrier wipes. That's a ll kare. That one's from Isabel Isabel. Look at you helping out. What's next? This person says the sugar patch best patches the sugar patch.

Let's see. Let's do another sugar patch skin prep. Alright, we're getting down to it here. I think it's a great thread by the way. I'm going to leave it up for a little while in the private group. If you go to the top and go to featured I'm going to leave this thread in there so you can really go pick through it. Yeah, I think I'm down to I think I'm down to some repetition here. I'm just I'm scrolling real quick to be sure. Oh Goo Gone does make a bandage remover so they make one for your skin as well. Here's a vote for not just a patch calm tegaderm Fixi see adhesive patches for G sixes fixie see if i x i see on Amazon expression met against they put medical again. Sensi care barrier wipes and Cincy care adhesive remover spray have been awesome, says Julie. Sugar patch they put medical Flonase What's this one? This one's different. colo past barrier wipes to protect the skin COLOPL A S T. This one first person says I have to be honest what we use. It's hard to beat the free Dexcom over patches. They'll send you 10 of them every month if he asked for them. I agree we use them. They're terrific. Arden of course isn't allergic to anything so we don't have to worry about a lot of this but they are great if you don't have any allergies to adhesive. Here's one from Josh he says freedom band for Dexcom G six Benadryl, Some people use Benadryl spray underneath a barrier to prevent adhesive reactions. This person says not to use alcohol I have to agree. Alright guys, I think that's it. We've, we've, as they say, done it. I'm still scrolling. By the way, there's so many lovely people. Here's one safe and simple skin barrier on Amazon. I haven't seen that one yet. So another vote for fix IQ. Let's see. And we've done all right. Wow, I'm looking at some people's pictures of the reactions to adhesives and they're just terrible. Okay, guys, that's it. 187 replies, I've done a good job of picking through them and getting you everyone that was in there. None of these people are sponsors. I did not take any money to say anybody's the product I just thought this would be something for you. That might be helpful just to hear what everybody else is doing. Again, if you go to Juicebox Podcast, type one diabetes on facebook and join the private Facebook group. Right there in the featured tab at the top. You'll find this post which I will leave up there for absolutely as long as it is popular and people are commenting on it. Last thing I want to say is that for a great many of you, if not for most of you, and he's problems like this will never be an issue. But for the people for whom it is an issue. It is a serious one. And I hope something here today helped you.

A huge thank you to one of today's sponsors, G voc glucagon find out more about Chivo Kibo pen at G Vogue glucagon.com Ford slash juicebox you spell that? G v o OKEGL. You see ag o n.com forward slash juicebox. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're enjoying the show, please share it with someone who you think might also enjoy it.

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