Scott Benner 6/3/22 Scott Benner 6/3/22

#693 Ask Scott And Jenny: Chapter Seventeen

Scott and Jenny Smith, CDE answer your diabetes questions.

What number do you correct at during the night?

When you do the thing that you know it’s going to happen, and it does not happen over and over again, how do you adjust? How long until I assume I need more insulin?
How do I manage pre bolusing when I have gastroparesis?
How do I find a great healthcare professional in my area who is open to all these ideas?
Let’s talk about stomach bug and diabetes management.
Do type 1 get sick easier?
Let’s talk about insulin needs during and after an illness.

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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
At the beginning of every episode, I tried to record a different opening. And I always just end up back at Hello friends, and welcome to episode 693 of the Juicebox Podcast. It's classic.

Today, Jenny's back for chapter 17 of ask Scott and Jenny and I think this is the last ask Scott and Jenny for a little while. So dig in and enjoy. Please remember, while you're listening to Jenny and I, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please Always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you're interested in hiring Jennifer, she works at integrated diabetes.com. Also, if you have type one diabetes, and are a US resident, or are the caregiver of a US resident who has type one diabetes, you can go to T one D exchange.org. Forward slash juicebox. Join the registry, take the survey help people living with type one diabetes, it's completely HIPAA compliant, absolutely anonymous, and supports not only people living with type one, but the Juicebox Podcast. And I'm Juicebox Podcast so you'd be helping me out. T one D exchange.org. Forward slash juicebox takes fewer than 10 minutes. This episode of The Juicebox Podcast is sponsored by us Med, go to U S med.com. Forward slash juicebox. Or, or call 888-721-1514. Whether you go to the link or call the number, you're going to be chatting with us mid and finding out about your benefits. That's right, you get our free benefits, check out that phone number, or at the link. The podcast is also sponsored today by Ian pen from Medtronic diabetes in pen is an insulin pen that does a lot of stuff that a pump does when you pair it with the app that comes with it. And it's pretty darn nice. Check it out at in pen today.com I'll be talking more about in pen and US med a little later in the show. You don't want to miss it because it's late at night here where I'm recording and I'm probably gonna say something stupid. That's the thing that happens when I'm tired. Hey, Jenny, how are you?

Unknown Speaker 2:41
I'm fine. How are you? Scott?

Scott Benner 2:42
Good. We're gonna do more ask Scott and Jenny today. Oh, yay. Yeah, people tell me we seem very relaxed and happy while we're doing these.

Jennifer Smith, CDE 2:52
I hear you can see our faces. We are pretty happy people don't really frown too much.

Scott Benner 2:58
I just somebody told me that we seem like it's fun. And I said it is fun. And then I thought Oh God, are we like diabetes? dorks like we're just having fun like, going like, hey, it's an interesting question. Let's think about it for a second. So apparently, that's what that's what we are. Alright, let's just start a Start Here. There were a lot of questions. Questions, right? Um, which one do I like to start with? Alright, here's a very simple one. What number do you correct at during the night?

Unknown Speaker 3:29
Ah,

Scott Benner 3:31
so do you think this question comes from people who were pretty much told not to correct their high blood sugars at all?

Jennifer Smith, CDE 3:39
I would say maybe it started there. Yes. Because that is certainly something that's still taught not to correct. I think sometimes it's in the beginning stages, maybe after diagnosis, because they're still trying to sort of figure out how much insulin works. And in a time period where you're supposed to be sleeping, it's kind of a worrisome thing to have to sit up and wait to see what happens when you take extra insulin. But honestly, it kind of boils down to knowing that your settings are right, it's knowing how insulin works for you, how much does it take for this amount of insulin to do the job, and overnight, I mean, unless you talked about a lot of the variables. We've already talked about things like pizza and fat and do bla bla bla, or exercise overnight. If you've got your insulin sensitivity factor pretty dialed in, you should be able to correct a value and take the doses if you're using a pump. First, you should be able to take the correction offered and it should get you to the target that you've got set in your pump or pretty close to it right. So I I think in terms of defining a number, it also starts with the Finding what's the target you're aiming to sit at? If you are comfortable at 110, then you're probably not going to be correcting a 115. Right? But if you really want to sit at 85, then you're probably going to correct the 110 to be able to get down to that.

Scott Benner 5:21
So I see this question like coming from two different perspectives. So if you were to ask me, where would you correct? A blood sugar? I would tell you, it wouldn't matter if it was overnight or during the day, or if we were in a car ride or at the top of, you know, a mountain. Although the top of the mountain, maybe it would, because there would be some difference. Yeah, there'll be differences there. So there's a bad example. But, you know, Jenny makes the point already. If you trust your settings, then you can correct a 95 blood sugar without making yourself low. Right? Correct. And Arden's using DIY loop. So I mean, her loop is correcting at 90, you know, like, so there's the answer. If your settings are super tight, and you know what's going to happen, is gonna happen, then you can correct anything. But I tend to think that this question comes from people who are maybe more new to the podcast, maybe or, or have are seen, like wildly out of control blood sugars. I read this question as what number is high enough that I put in insulin? I'm not going to make a low blood sugar later? And I have to tell you, I think the answer to that question is go listen to the protests. So that that stuff doesn't happen to you.

Jennifer Smith, CDE 6:37
Agreed, at least not all the time, or Yeah, often, right. I mean, those random i, we talked not long ago, and like I had this horrible high blood sugar overnight, they didn't hear my alarms, and you know what I mean, things like that they can and and will happen. But overall, as I've said, and as the pro tips different definitely cover, it's if you know that your settings work well. And you're not happy with the number that you see, when you wake up to go to the bathroom at night or your alarm goes off or something, you shouldn't be able to correct that number and get to the one that you really want to sit at. So I don't I don't think it's necessarily defining what number to correct above. It starts with Where do you want to be? And if you're not there, do you know that taking extra insulin to get you there, we'll do it without causing alone.

Scott Benner 7:28
Now, some practical thoughts from me on this would be if you see a 200 blood sugar, and you aren't sure how to safely bring it back to 90, if that's your goal, at least wax something out of it, like throw in something like if you could make a 191 50 doll better than 190, right? You know, take something out of it put in put in some sort of a Bolus. And actually these moments are where you really learn, because I can't tell you what number to correct that or how much to correct. But if you do it over and over again, you know, you can look at that 190 a stable 190 At two o'clock in the morning, put a half a you in London as an example. And it ends up being 170. And you think, Okay, well, I wonder what would happen if I put a unit on it, maybe it would end up being 140. You know, you're gonna learn from trial and error. So that's it. It's a roundabout way of answering that question. But I think there's more. Like there's more good, good, good, usable thoughts in there than there is? I mean, I can't tell you what number to correct that that just, that seems like something that seems like something a newer diagnosed person would ask an endo, and then the endo would pick some huge number that they thought there's no way they can make a low out of you know, correct. Yeah. So anyway, all right. It's an interesting question. It says, when you do the thing that you know is going to happen, and it doesn't happen over and over again. How do you adjust to the new normal? And the question ends with is it just time? So I think the question here is, you know, I've been using a unit to make a 150 100 for a year and now all the sudden it's not working, how long until I? I assume it needs more insulin in that example.

Jennifer Smith, CDE 9:17
I mean, I would go about it the same way, a dress a lot of adjustments that I work on with women in pregnancy. Three days, we have a trend, let's make a change because something clearly has. It's not working the same way any longer, right. I think a lot of times if you have been stable for a really long time, it can seem almost like something else must be the problem, right? Maybe my insulin went bad or it's got to be a bad site or something else was the issue. It's it can't be that my setting has all of a sudden just needed a change, right? But it could be Yeah, I mean, we know that diabetes is not this, you get to a point and everything just sits there. Right? If it was man that would be easier to test things and be like, great. I'm done for life. Now I just have to count my carbs.

Scott Benner 10:14
That's it whole podcast would be about how to get to that point. Right,

Jennifer Smith, CDE 10:17
exactly. So. So yeah, I mean, a couple of days of a trend, as long as you have considered variables, you know, even illness in the picture or a change in your schedule, a change in your sleep schedule could certainly mean and we talked about sleep a little bit before, that interrupts your sensitivity to insulin, more to the case of being a little less sensitive than more sensitive. So if there aren't any known variables in the picture, nothing that you've really changed, then I expect that you probably need to retest and say, okay, one unit doesn't drop me 100 points anymore. I guess I'm going to have to use a little bit more, I'm going to change my ratio, or my normal sandwich at lunchtime, or salad used to take two units of insulin. And now I'm getting higher, or lower, maybe after and it's been a couple of days.

Unknown Speaker 11:13
Yeah, I injure ratio

Scott Benner 11:15
in my mind I, I'd look at so the first thing I always do is I go to gaps of time, where there are no active meals or active boluses. And I look for stability. Because that's how I think about base. Yep, like basil should. Basil should be pretty easy to check in those moments, especially if you have a CGM is I guess what I'm saying? So if I find stability in those moments, and that's the ability existed a number I'm happy with, I think, okay, then Basil is good. Maybe this is just carb ratio. You know, maybe I'm not Pre-Bolus thing enough all the sudden, like, who knows? Like, that's great. Why would end up looking after that? Yeah, I think so. And as far as time goes? I don't know. I mean, if three days seems to be the standard for people, you know, I and then the question is specifically about once it's set in stone that this is new. So yeah, I mean, three days is reasonable to me.

Jennifer Smith, CDE 12:14
Yeah. And I would say within that defined time period that you're analyzing, it's not like when I notice things that change, it's not that I'm just letting things sit higher or lower. To actually see, I am adjusting within that time period, so that I'm not left consistently high or consistently too low. And sometimes enough of those changes within the analysis time period. Gives you a good vision then for how to change the rate or the ratio by day three,

Scott Benner 12:48
let's say and I say Just don't forget what you changed it from because if magically a day or so later turns out you are sick and or something like that you didn't know it. You don't want to forget what your ratios were. So you can go back to them because that has happened to me before. Mike. Wait, it worked before what was it?

Jennifer Smith, CDE 13:07
Change it from? I was it's funny. I'm, I'm, I am getting a new phone. And I was going back through all of my pictures and I'm amazed how many of my like screenshot photos all right, like diabetes stuff. Like I changed this to this or look at this super awesome, like completely just flat day or whatever. I was

Scott Benner 13:31
awake. I was away for a few days, and we had to change Arden's insulin sensitivity. And I said screenshot those, send them to me and then change them because yeah, I'm not gonna remember either you. Oh, here's an interesting one.

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this is a question that I've actually been asked a handful of times over the years. And the first couple times somebody asked me I thought I don't know anything about gastroparesis. I can't answer this question. I have no idea. And then I spent some time talking to people who have it. And my understanding loosely ended up being that sometimes I eat and my body starts to digest food. And so I get the impact that I expected. I know how to line up the insulin. And sometimes that food just sits in my stomach doesn't get digested. And like the question says, I have all this act of insulin. How do I know which is going to be which and one time I said to somebody, oh, maybe you could try bolusing the way that I think of bolusing for infants and smaller people, like get a little bit going. And then when you see the impact, quick Hurry up, throw the rest in. And I've never heard back from anybody that that didn't end up being valuable for them. But I am wondering what use help people

Jennifer Smith, CDE 19:10
know that it is similar because it's like a small child where you don't know exactly like they love their favorite plate of food and you put it down today and they eat three nibbles and they're kind of done right. So it's a question of how much and when is it actually going to completely get digested in this case? Or absorbed I should really say and a timeframe that may help as I've worked with a number of people with gastroparesis is that on a more empty stomach, which for most people is first thing in the morning, you're going to get more more consistent, absorption, digestion because there's nothing there's nothing left over in the stomach. by them, right? By the morning time, we have, for the most part this like clear route system, if you will, right. And the body is more likely to also, as everybody with diabetes experiences want to get that food in to get your body some energy to get going for the day. So if there is a time period of the day, if you expect a need for a real Pre-Bolus, because of sooner, quicker absorption of the food, it seems to be morning time. And then as the day rolls on, and as you put more food, whether it's meals or meals and small snacks or whatever, through the course of the day, it tends to be the end to be all of the night, that is often the hardest to gauge when to dose the insulin, because by that point, with a with a slowed down digestion and absorption of the foods earlier, you've already still got stuff sitting there. So that may be in a timeline through the day may give some visual as to or a structure, I guess, to looking at what this person might be seeing happen, saying sometimes I seem to need the Pre-Bolus and it works just fine. And other times maybe it's a time of the day. Okay, so begin with first

Scott Benner 21:12
kind of track that to see if you're seeing it more at one time a day than the other. Possibly most likely, at the end of the day, I guess as the body is having more and more food added and more and more trouble dealing, right. Okay. Right.

Jennifer Smith, CDE 21:28
I mean, the other thing would be the case of also just trying to figure out your more typical foods. And if they are more causative to immediate need for Pre-Bolus. Or I just have to follow this kind of a meal out. And as you said, Put the insulin in in a slow duration. You know, an extended Bolus, for example, often works fairly well, if you've tracked enough around particular meals to know what their action seems to be like most often for you.

Scott Benner 22:04
Is this a mimicking of like pizza? In a person who doesn't have guests? Or is that a similar or not?

Jennifer Smith, CDE 22:10
It's that's a similar thought. Yes, I mean, not for the reason of fat in this. It's just a slowdown in the body's ability to digest the right way and absorb the food the right way to give the glycemic effect that you would expect from that particular food.

Scott Benner 22:29
I'm always kind of in the back of my mind when we're talking about timing. I always think I always wonder how many people are listening thinking I never considered that before. I just thought I just thought it was just you know, I count the carbs. This is the insulin for it all goes in all works out doctor told me to do it, it'll be fine. You know, in considering this. I mean, it's, I mean, for the people I've spoken to it's a terrible thing to be afflicted with it. Really, it really sounds difficult.

Jennifer Smith, CDE 22:57
Another consideration that I know people have tried to as you know, today's rapid acting insulins, while I don't love the name of them, because they're not really rapid. Right? A rapid is like, Okay, right now, it's done, it's working. But they are certainly more rapid than the AR that I was on when I was first diagnosed, right. But in the case of potentially needing that lingering effect of an insulin, some people actually do better with a regular insulin. So that it's it's creep out in action is longer in taking effect. And again, timed right with meals that are well planned or, or well evaluated. Almost like the same thing for breakfast, lunch and dinner. That type of insulin could meet the food better than a rapid insulin could.

Scott Benner 23:52
So back to the old timey insulin.

Jennifer Smith, CDE 23:54
Sometimes that can work better.

Unknown Speaker 23:57
Yeah, great. Well, good question.

Scott Benner 24:00
Yeah. Here's one. How do I find a great CDE in my area who is open to all of these ideas and works well with teens? I have. I'm gonna I'm gonna ask you first. What do you think people should be looking at when they're looking at doctors?

Jennifer Smith, CDE 24:19
From I'll give my adult perspective, first, adult perspective when I call to get into a new endo office. Some of my first questions include things like how many type ones does your practice see? Oh, okay. Yeah, comparative to type twos or other types of diabetes or other types of endocrine disorders, right. I mean, you have may have an endocrine office, but they may be more heavily thyroid based. I mean, they made you know, I would say dabble may be the word in diabetes only be because that's in their realm that they don't necessarily do that most. So that's a question I ask is, what's your population of people with type one? And then what goes right along with that is? How much technology do you do you use in your office? Do you use one pump? Or you recommend recommending only one type of device? What type of data like evaluation software do you have? How can I send my information to you? How often are you going to get back to me? I have a lot of questions. I'm trying to really do better. I need somebody to answer questions weekly for me. Is there somebody in your office that can do that? Do you have another question about just the endocrine office? Do you have a CDE? In your office? Do you have an educator who works physically in your office with your practice? Because again, then there's a little bit more collaboration in terms of the endo and that educator, they know each other, they're going to be more on the same page, if you will, you're not going to get information from one that's kind of contradicted by the other, which can make your decisions hard then because then you sort of feel like you're stepping on somebody's toes. If you're going outside of what one recommended.

Scott Benner 26:25
It's a terrific response. Because I, because Arden still goes to a, you know, to a children's Endo, I never I it's as you were saying, and I'm like, Gee, Scott, that's so obvious. Like, how did you not think that but it shocked me, I thought, oh, an endocrinologist might not be well versed. And they in even in diabetes, right? Like it's they could be doing Oh, anyway, I was like, wow, that's such a great answer. I never thought any of that

Jennifer Smith, CDE 26:49
know, when we lived when we moved to Northern Virginia, or the DC area. And I was on the search for an endo there. I went through three endos, before finding an endo who actually met my need. Because

Scott Benner 27:06
what were the reasons you didn't like the ones you found?

Jennifer Smith, CDE 27:11
The initial the initial person just was not up to date, that's the best way to say it. They were just not up to date with keeping up with how people were managing today. They were very much to old school. And the second office was, it was not enough. They had technology, but they were very much toward one type of technology. Gotcha. And just really were not keen on the others. Not that they wouldn't allow prescribing, but they just didn't know enough about them. And that wasn't cool to me. So

Scott Benner 27:54
one of the one of the one of the companies sent really great bagels and pens that wrote really well. And so that was the pump they talked about. I got Yes, I got pretty much. Yeah.

Jennifer Smith, CDE 28:05
So yeah. And then the office that I eventually ended up going with was, it was a small private practice. Actually, it wasn't affiliated with any, like, hospital system or anything. And he just he really, what got me with my first visit was that he took the time to sit down and ask about my life, and how I manage specific things. It wasn't just a generalized visit

Scott Benner 28:34
the the things that you know, that they need to know to actually answer your questions, right. Okay. Yeah, not just you have, what's your carb ratio?

Jennifer Smith, CDE 28:43
Right? What's your a onesie? What's your carb ratio? Let me take your pump from you and physically touch your device and change everything and handed back to you. Hey, go run, run, run from those offices,

Scott Benner 28:54
eat healthy and exercise. I'll see you in three months. Thank you. Well, I will just throw in here, that if you go to juice box docs.com There is a growing list of doctors that people who listen to the podcasts and an end if you have a doctor who fits the bill, please send it to me so I can add it to the list. I would say for Arden, you know, we went with a big institution that was near to our house. And I don't know like I I don't I can't I'm such a bad person to ask about this because I'm me. So I don't know how valuable it is or it isn't. I really couldn't tell you. I can tell you that I've been in situations where I've been asked to go talk to other patients, which is weird. And I often there are times I get asked more questions than I get to get ask in a visit. So sometimes my answer is if you know what you're doing. Good doctors are the ones that stay out of your way and write you the scripts when you need them.

Jennifer Smith, CDE 30:00
and can support and discuss, especially if you've come prepared to a visit, to talk about, I've made these changes, these are these are the reasons that I figured out how and why to make these changes. Do you see anything else? Do you think I'm on the right track? And if you've got a good doctor who can sit down with you and go back and forth and discuss, then you've got somebody who, you know, is good, right? If not, and all they really just want to do is look at data without any explanation to it, then,

Scott Benner 30:34
hey, I find value in the fact that Ardens doctor can do her a one C, and it goes through my insurance, okay, and we don't have to go to another lab to do it. Like, to me that's like a bonus. Yeah. But I would say, I mean, I would say we've covered it here. But how do you find a doctor, that's going to work well, with teens, it's you're going to talk to them and see if it works well. And if it doesn't, you're going to need to have the nerve to move on. That's all.

Jennifer Smith, CDE 31:00
And honestly, in today's world, like I had none of as a growing up child teen. The online community is quite a good resource. And people give their honest opinion. And I think in especially in in our diabetes community. If somebody's had a good experience with a doctor fourteens or a doctor for kiddos or a doctor for real little littles or college kind of connection doctors. It can that's one thing that I think it can help to ask, because people are very happy to share when they've had a good experience.

Scott Benner 31:37
Yeah, listen, feel free to go into my Facebook group and ask specifically about certain doctors. I don't mind if you do that and be surprised that that group has gotten big enough now where you might actually get a couple of answers I we're starting to get to the point where people are bumping into each other in like cascos and wearing shirts from the podcast going, Oh my God, listen, that podcast too. So you might actually find more people than you think. I mean, unless you're in a very rural place, but you know, okay, well, thank you. So here's the question, I have no idea how to answer. There's a stomach bug going around. This person asks me directly have I ever had to take art into the ER for not being able to manage blood sugars and ketones when she was vomiting? Seems like it's a common thing to have happened with illnesses that cause vomiting. I will tell you that when I see this time of year comes up and people start posting about my kids throwing up what do I do? I'm thrilled that I made that Facebook page because people who know what to do come pouring in. I don't think Arden has ever vomited in her life. Wow. Yeah, she doesn't get Yeah, that's amazing. She doesn't get sick. I don't know when here throws up like it's we're not a throwing up family. So Arden's never vomited. She gets sick incredibly infrequently, which I think is just obviously hurt her stellar auto immune system is very strong. Kill nearly anything, Jenny. One way your thyroid, your pancreas an illness, it runs roughshod over everything. Let's get rid of, but she um, she just doesn't get sick like this. She's never had a stomach virus. And Arden's also, she's a bit of a warrior at me, she she would choke something down if she had to, she wouldn't like it, but she would do it. Having said that, she has had the flu as a small child. And I do remember that week of my life, very unfriendly, which I don't think it's a word, but it was not. I also had the flu. So she had the flu, I had the flu, and she was only a couple of years the diabetes, we were still using needles in a meter. And I remember giving her like small sips of Gatorade to try to keep him. Basically what I did was like flip the whole process around in my head. And I started thinking of instead of how does insulin bring blood sugar down, I started thinking about how does how to carbs bring blood sugar up, like how do I bump the bump nudge the other way, basically. And that is what we ended up doing. There was a time I actually gave her a lollipop to suck on. Because I thought this is it. Like she gonna she's going like like her blood sugar was falling during this flu. She wouldn't eat anything. And I pulled out a lollipop and I was like you're stuck on this. And that worked. I don't know, though. Like I saw a lot of people talking about it recently. So has it been going around?

Jennifer Smith, CDE 34:34
It has honestly I would say in the past month. I've had so many kiddos who have had some stomach bug of some kind and I think defining to I would hope that these days most people realize that the flu is not a stomach bug, right. Two different things. They're very much two different things. Which is why when you said she had the flu she did not have a stomach bug.

Scott Benner 34:59
No she He just was he how sick she couldn't eat anything? Yeah, that's correct. Yeah, that's a similar problem, you know, correct. Yeah.

Jennifer Smith, CDE 35:06
But it's a true stomach bug usually runs its course pretty quickly. For the most part, it's usually about 48 to maybe 72 ish hours. One, the two of those days being the real, like vomiting and possibly like diarrhea, not being able to take very much in, if that's the case, insulin adjustment, for the most part usually needs to be taken down. If you're thinking about digestion, you don't get as much absorption, even with the things that you are able to possibly take in. It just gets passed through. So which brings in the concept of well, what do I do about dropping blood sugars, right? Overall with a stomach bug where food intake has really taken a nosedive, taking insulin doses down by 2025 30%, and a base Basal amount. And then for any food that is able to be taken in whether it's Gatorade, or popsicles, or jello or you know, some type of electrolyte beverage with some carbohydrate in it. Don't dose unless you know that it's going to stay in.

Scott Benner 36:18
Yeah. Yeah, really? No, I that was the one that those are the that was the moment where I thought, I mean, if our blood sugar goes to 150, or 180, or 200, I'll bring it down slowly from there. But I'm not going to try to get ahead of it when I don't know what's going to happen. Right. Yeah,

Jennifer Smith, CDE 36:35
exactly. So it's, it's cautionary and kind of the question of, well, when do we end up going to the emergency department, right? I mean, the sooner that you start, not that you're not paying attention already to blood sugar, especially with the technology we have today, it's kind of hard to ignore what a CGM is showing you. But in the case that you've been paying attention, and you can start to see things happening one way or another, make adjustments sooner than later. Is is really it right? fluid status is also really important with a stomach bug. Because if food or anything is coming out either way, you're really losing hydration, you're so you have to make sure to replace that. Hydration often is more of the reason that I see people end up going in, because they literally can't keep anything down. Okay? Which then with diabetes, water or anything, they just can't

Scott Benner 37:34
keep that up, we're looking at DKA, right?

Jennifer Smith, CDE 37:37
We're looking at even DKA at a much lower value based on the fact of ketones, right? I mean, you could be in DKA at a lower glucose value. Because ketones have climbed so much, because you're dehydrated, you're not putting any food in your right. So they're, they're bigger things in the picture there that do need to be managed. I always also recommend that if with diabetes, you go to the emergency. As soon as you get there, and you know that you're going to be at least admitted to the emergency department, ask for an endocrine consult.

Scott Benner 38:13
Okay, right away. Yeah,

Jennifer Smith, CDE 38:15
right away. Because, I mean, emergency doctors, they see everything, they're really good team of people, but diabetes is not their specialty. It's, it's just not, don't let them take your insulin pump off. Don't let them disconnect your insulin or not give you your insulin if you've got a Basal injected insulin, you know, bring it along with you. For the safety of knowing that you you could give it if you needed to. But I think that's the big reason that I always say let's get an endocrine Council going there because you need somebody on your team who really does understand

Scott Benner 38:52
because a bit better, right? Because you can't, you can't even though you're in this fairly dire situation. You can't stop taking insulin because you're you're going to go into DKA and it could be a person who sees a low blood sugar their first thought might be we'll take the insulin away but your thoughts got to be IV glucose drip will fight this that way. Right? Yeah. Okay. You know, it's funny as you were talking about this, I swear to you all of my anxiety from the first time someone explained this to me when Arden was first like diagnosed came like rushing back into my chest because I remember thinking so there's going to be a time when this process and her body that we have to keep going artificially with this insulin becomes impossible to keep going and if we stop the insulin, she's going to just die a different way. Like you like that is how it how it felt when she was little, you know? Yeah, you really made me I got flushed while you were talking. Sorry. I don't know why I wanted to ask the ask the question because I know how scary it is, especially in the beginning, and especially if you're prone to this sort of thing. And I do see that sometimes kids get this illness sometimes. Some of them get it every year. Yeah. And so.

Jennifer Smith, CDE 40:13
And I think another one too, depending on as you just said, Your child is one who you know, is going to get this at some point. Make sure that that's a discussion within your endo visit at least once a year to revise or revisit what your plan of action has been. How has it worked? Yeah. Because then if you can see what didn't work, you can improve upon that for next time. We did this and we did this. We still ended up having to go to the emergency department. We still couldn't get around it at home. What can we do better or more aggressively next time? To avoid going to emergency?

Scott Benner 40:51
Yeah, I'm gonna, I'm gonna go right into another question that's similar, but I'm gonna say first, that the first time someone, you know, through the emergency line told me, I had to inject a unit a half of insulin to clear Arden's ketones. When I couldn't get her to eat anything. I was like, no, no, no, no. I think you're wrong. Lady on the phone, I'm not doing that. And then I just I said to Kellyanne like, they told me I have to give her insulin she's like, but she can't eat anything. Oh, my God, I'm gonna do it. And I did it. And it worked. And, you know, so knowing? Yeah, it really is. So your to your point about constantly being aware of what you're going to do your steps, that ratio is a good thing to know about as well. You know, how absolutely how much insulin we're going to use to clear ketones. Next question is, I feel like my son has been sick more in the last year since diagnosis than any other time in his life. Is this in my head? Or do type ones get common colds easier? When do you feel like you can trust that the other important adults in your life to care for you? This is a two part question how long? Alright, let's go with the first part first. Okay. Two people with type one gets sick easier, Jenny?

Jennifer Smith, CDE 42:09
I'm going to say no. But with a little added note there, okay. Right. So people with diabetes in general, that is well managed, with lower variance would be less likely to get sick frequently, only because the stress factor of variable blood sugar, and or numbers that are higher, which leaves your body stressed already, those aren't in the picture, right? So the more variable and the higher your blood sugars are, the more likely that that stress on your body is allowing an illness to actually also make its entrance and that your body can't fight it effectively. That's the easiest that I can kind of describe

Scott Benner 43:10
that. So because we're slightly post COVID Right now, post COVID, or post COVID ish. Let's say that. I'll use this as an example. When COVID first happened, everybody was yelling, why someone calling me Do not call me. But you're so important to talk to, you know, stop it. Everybody was like, you know, remember it was you know, it's like, well, we want to vaccinate the people who are at risk. And then there's that big argument that you hear people say, Well, I have type one diabetes, I'm at risk. And then someone says, I have type one diabetes, that doesn't put me at any more risk than anybody else, you know, like, okay, great. That's gonna be fun online. Anyway, to your point, that someone, I'm going to just use you as an example, who you know, eats a pretty clean diet and whose blood sugar is very stable and managed and lower. almost normal. We've never asked her anyone say that interesting. You know, we've never once said that, wouldn't it be great if it was a great if you're like, I'm pretty steady. 788 right around there usually get everybody be like, Why have I been listening to stupid podcasts?

Unknown Speaker 44:21
Like, oh, my God.

Scott Benner 44:24
You're not coming on anymore. What? But I'm not gonna ask anyone. But, but somebody who's just cracked me up. I never thought of that before. Isn't that funny? We've been doing this for years. It is never occurred to me to ask you. Yes.

Jennifer Smith, CDE 44:41
Well, I'm happy. I mean, I don't care. I've talked about it all the time. My patients asked me and I tell them all the time. So my last one was 5.5. By

Scott Benner 44:48
God, I mean for me, not for you. That's very nice. But so but so somebody in your situation. I would think that for reasons you just stated your They're healthier to begin with, right? And that I don't know that other people see one ad all day as cuz it might be the best they've ever been able to accomplish, you know, but to give an example, last night so Arden's working on this big project for school and she got all like, hunkered down with it, I wasn't home, and she has been doing more on her own. And I think her site went a little funky, where she was too sedentary or something happened. And Arden had like a 175 blood sugar for like six hours. And, and by the end of the night, she's like, my back hurts and my ankles sore. And she did not feel good from her blood sugar just being 170 for like six hours. So you know, if you can think about what that could do to somebody over six hours. What if you're always living like that, you know, like, what else is happening to your body? So So just getting type one diabetes does not make you automatically have more cigarettes, right? No, it does not if you're not maintaining your your blood sugar's that could be difficult on you could be difficult, correct? Yes, I we have so many questions here that are right around this. And we have a couple of minutes left. So why does blood sugar either go low in sick or high? And then after illness? Sometimes you need a higher Basal. Is that higher Basal temporary. So isn't this different for everybody how illness that impacts you or not really,

Jennifer Smith, CDE 46:25
I've found that it's definitely different for everybody, I would say the grand majority of people it is if you have something like a respiratory bug, sinus infection, some type of bronchial something or another, you will usually experience a rise in insulin need during the illness. In fact, after having had diabetes long enough, you might even find that going back in your records, before you even had symptoms. You had higher blood sugars for a couple of days. And they may have seemed odd. And then finally, one morning, you wake up with stuffy head kind of sore throat, you know, not feeling the greatest, those climbing blood sugars even before you were symptomatic. Or often because your body was fighting something off, it was trying to manage and deal with something right. But most people have a higher insulin need during an illness, especially the height of the illness really where you're not feeling well at all. And then sort of a slide back down to where you were before, a baseline of need. Stomach bugs can be a little different stomach bugs could reduce your insulin need during and because it takes some time for your digestive system to recoup. In the aftermath, your insulin needs could actually stay low for a week, give or take. And then they start to go back up to more normal. If you're the kind of person who is found that an illness really drops your insulin needs, and then after your insulin needs climb up, I mean, do they climb back up to where you were before you were sick? Then they're not necessarily higher. They look higher than they were while you were sick, but they're just kind of going back to where they were

Scott Benner 48:18
right. This is an offbeat question. But do you take probiotics?

Jennifer Smith, CDE 48:23
Where do you I do take a probiotic you

Scott Benner 48:25
do? Like every day?

Jennifer Smith, CDE 48:28
In the morning in the morning? Okay.

Unknown Speaker 48:31
A refrigerated one.

Scott Benner 48:32
Do you take

Jennifer Smith, CDE 48:34
there you take refrigerated ones.

Scott Benner 48:36
You're always told to take refrigerator ones? Yes. Okay.

Jennifer Smith, CDE 48:39
Oh, that was for my naturopathic doctor. That's not like, you know, just Googling information or whatever. But that was my naturopath had said, if you're gonna get a really good probiotic, get one that's been refrigerated that you keep refrigerated.

Unknown Speaker 48:52
So you take vitamin D, do take vitamin D, zinc, every day, I take sync.

Scott Benner 48:59
Okay, we're gonna talk about that one time. It just popped into my head just now. And I was like, we're gonna talk about this. Not now, but but

Jennifer Smith, CDE 49:08
I've taken them a long time. It's not just been the past two weird years or anything. Right. And those have been things that I've taken for a while.

Unknown Speaker 49:19
So yeah,

Scott Benner 49:20
I I even notice if I don't take iron. It takes a couple of weeks of me forgetting iron for my nails to start breaking. Breaking. Yeah, like it just out of nowhere. Like I'll touch something and they'll just split. And then when it happens, I think oh, why have I not been taken that iron? And then I go right back to it. It's that's very interesting. Okay, we're gonna have to do supplement conversations at some point. Okay, well, Jenny for now. Thank you very much for doing this with me.

Unknown Speaker 49:47
Absolutely. It's always fun.

Scott Benner 49:53
Candy Smith is on the show. And everybody loves Jenny. Thank you, Jennifer. Integrated diabetes.com That's where you can go higher Jenny. Thanks also to in pen from Medtronic diabetes. Don't forget to go to in pen today.com I did that great ad read in the middle. Don't make it a waste okay, like let's let's not make me look silly here I did a good job you go do your part. I also want to thank us men remind you to go to us med.com forward slash juice box or call 888-721-1514 Get your free benefits check today. Getting your diabetes supplies does not have to be a hassle links to the advertisers or the show notes of your podcast player and at juicebox podcast.com. If you can't remember the links that I have said ad nauseam in this hour. Before I go, I'm gonna remind you that the Facebook group is poppin Juicebox Podcast type one diabetes on Facebook, it's a private group. So you're gonna have to answer a few questions to prove to the Facebook overlords that you're a real person. But then after that, you're right it Did you hear that I gave you a it's like a sound effect really, but it's just my hands rubbing together. But right in what else I want to tell you diabetes pro tips are available at juicebox podcast.com In your podcast app at diabetes pro tip.com. But if you're gonna use your app, just go back to Episode 210. That's where it begins with an episode called newly diagnosed starting over can't remember that join the Facebook group. Go up to the featured section. There's beautiful lists right there of all the series, not just the protip series, but defining diabetes defining thyroid, the variable series, how we eat, there are so many to choose from. Actually, I can't remember them all now, which is why I just said there's so many to choose from. What else do I need you to do? Well have a good day. I mean, I definitely want you to do that. Have a good day. I had a good day today. Drink plenty of water. You don't I mean like stay hydrated. They say it's good for the skin, your eyes, clarity of your views, and insulin keeps that insulin moving around your body. Very nice. So you do not want to be using manmade insulin without being hydrated. It's gonna get Funkytown on you drink a glass of water. And then I have another one. What else? Have you said hello to a stranger recently, I always find that to be uplifting. Maybe some eye contact you know hey, how are you are good day, that kind of thing. That works. Let somebody in in traffic. That's a good thing to do till somebody wants to get over just guy. Yeah, come on over. Makes you feel good. Makes you feel relaxed inside. Like I did a good thing. You know, and it doesn't hurt you it really you can just pass them later. Anything else? What do you do to to kind of give back to the world and yourself to yourself personally inside your deepest, darkest self? How do you light Matt load? Right? You go for a walk? You sing in the shower? Do you sing in the shower? You crazy kid you do, don't you? I don't have watch YouTube videos in the shower. That nobody else does that and my being mocked silently through the either. I don't appreciate it. Yeah, like throw up a YouTube video. Throw it up on the side of the shower. You know, check it out. Learn something new. Sometimes I'm learning about like computer stuff I need for the podcast or cars or I don't know. Comedy. A lot of times it's comedy. Yeah, I just found a guy the other day I really liked his name. Sadiq Ali Ali Sadiq. I think it's Elise Sadiq. I found him I found him interesting. Totally good story. Let me see what his name is. I'm really sure it's Ali Sadiq. It is really funny guy. Actually just put up his last special on the YouTube. I really enjoyed it. This is it's not usually what we talked about here. But at least Siddiq. I thought you were funny man and tell other people about it. You told a great story. good storytellers are hard to find. What else do I want to say to you? It's very late here. My eyes are bugging out of my head. You know when your eyes get like, hot because they're dry. I'm up to that part right now. I should go to sleep right? This is the last thing I have to do tonight. So I'm going to do that. I'm going to say this. Thank you so much for listening. I really appreciate it when you leave ratings and reviews for the podcast especially when they're good ratings and reviews like five stars and you're like oh my god I love this podcast like stuff like that. That's stuff I love. I love it when you join the Facebook group Facebook group very proud of

you catch me on the Instagram if you want to please go to the T one D exchange and take that survey for me. He one the exchange.org forward slash juicebox are really honestly can I speak the like people for a second? Like I know in the beginning I want to kind of time limit on like T one D exchange. But it really is easy to do. And your answers, which are also simple answers to simple questions genuinely help people with type one diabetes. It really genuinely helps people and I get money And then I take that money and I, I buy computers and I pay for my electricity, I get food, I send my kids to college, I buy gas for my car in I mean, I keep myself going and then like me, I'm like all like kind of like, you know, financially okay. And then that allows me to make the party. Yes, you understand commerce, I imagine. But this is why that's important. I get money for the ads, I get money when you fill out the survey, the survey actually helps people. It's not like I'm doing some crap thing where it's taken advantage of you or something like that. It's meaningless, or you're gonna get like, you know, emails from like, I don't know, people bugging you about buying solar panels or something like that. I mean, it's about diabetes. It helps people diabetes, it helps me it helps everybody. In 10 minutes, T one B exchange.org. Forward slash Juicebox. Podcast a bit of a tangent. Are you still listening? Since usually, I haven't done this in a while or I've just rambled on at the end of the show. I mean, if you're still listening, you're a fan and I appreciate you extra that people stop listening. They're great, but you're better

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#692 Afrezza Trial

Kim returns to talk about a Afrezza Trial

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 692 of the Juicebox Podcast.

Kim from Episode 443 is back 443 In today's What 692 You're probably thinking that was like 1000 years ago, Scott 1000 years, it was actually February 2021. But, uh, hey, I'm a prolific podcaster so the number grows quickly. Anyway, Kim was here in 443, to talk about her daughter's story, and to share a bunch of information about some diabetes clinical trials with us, and she is back today to talk about another trial, this time with the inhaled insulin a Frezza. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the registry. Take the survey help people living with type one diabetes while you're supporting the Juicebox Podcast, T one D exchange.org. Forward slash juicebox. This episode of The Juicebox Podcast is sponsored by the Dexcom G six continuous glucose monitor. You can learn more about the Dexcom G six or get started with it right now@dexcom.com forward slash Juicebox. Podcast is also sponsored by Omni pod. That's the company that makes those tubeless insulin pumps, the Omni pod dash, and the Omni pod five. That one's got an algorithm in it. If you want to learn more about them, you're going to go to Omni pod.com forward slash juice box. I just got my license retaken. So if you listen to the podcast, oh, by the way, we're recording just so you know. And I had that very low iron problem for a long time. Yeah. And so I had a photo of my driver's license where I looked like, someone hit me with three cars, and then stood me up and went smile. Like, like, I really look sick in it. And so when

Kim 2:34
they tried to make you happy at the DMV, so surprising

Scott Benner 2:37
this, I look back now and see that I did not feel well. And And anyway, I so I get the thing in the mail. And they're like, look, you can just read, you know, renew online. I'm gonna go no, I'll take the new picture, please. And yeah, so I go down there. And I put this whole effort into it, and I stand in front of the woman. And she goes great. And I'm like, why is the camera like, at my nipples pointing up? Like, Kim, I don't have that kind of face. You don't I mean, like, not many of us do. Maybe I can shoot Brad Pitt from the floor. But I don't know who else you know, Damian. really tall. I said to her, I was like, Can I crouch down? So this thing's more eye level with me. She goes into please do not. And I was like, All right. So I got back a slightly better photograph. At least I'm not sick anymore. But I still keep my head's too big for this kind of photography. You don't I mean?

Kim 3:26
Well, is that the photo that I'm seeing of you now? Because you look perfectly handsome there? No, that's not at the DMV.

Scott Benner 3:31
That's me holding the phone. 12 feet over my head to take that other angle. Okay, I threw the phone up in the air. That's how much higher it is.

Kim 3:41
Yeah, because it looks good. Well, thank

Scott Benner 3:43
you. But generally speaking, we should not be we should not be shooting people from the ground up. It's not a great idea for people to look at it that way. And they're all They're all 23 years old, by the way to

Kim 3:55
DMV is there to provide you, you know, the ultimate and customer service. So

Scott Benner 4:00
it's still 1,000% better than it was?

Kim 4:02
So do you understand sarcasm?

Scott Benner 4:05
Well, I don't see a ton of reason for me to be sarcastic in this episode, which by the way, I've been excited about so I appreciate you doing this for me. Just do do me this favor unless you have any questions. Just introduce yourself very quickly.

Kim 4:17
I'm Kim and I am let's see the mom of a type one diabetic who is 16, who was diagnosed when she was 13 on her next to last day of seventh grade. And after my daughter was diagnosed, her name is Nina. After she was diagnosed, I found out about JDRF and wanted to do what I could to help so I joined the board of Northern JDRF in Northern California and my my job specifically is as a clinical trial education volunteer to make sure people get connected with clinical trials that might benefit them and benefit diabetes research.

Scott Benner 5:02
Alright. So, Kim, have you been on the show before?

Kim 5:05
I have I was on the show about a year ago. And you did an interview with me just talking about the process of joining a clinical trial and about all the clinical trials that were available to people at the time.

Scott Benner 5:21
Right. And I do remember, I brought that up. So I could ask if you knew what episode number was?

Kim 5:25
Oh, I don't. I don't remember. And I do but I do. Remember you said, you know, if there's ever a clinical trial that you're excited about, and you want to share with people, you know, please come back on for a few minutes. So that's why I reached out to you again,

Scott Benner 5:39
no, no, absolutely. I just listen, it's my job to know what Episode You're on. I just thought like, I can't get away with it. If you were like, Oh, I know. It's a great. No, do you think that what we spoke about in that last episode? Is that still applicable today? Or was that time sensitive?

Kim 5:55
So some of it was time sensitive, because at the time, there was the plasma protect trial, there was the clever trial, which was Verapamil in closed loop systems, both both trials for newly diagnosed patients. And happily, those trials have gotten enough participants. And so they are no longer recruiting. Which is wonderful, because one of the reasons I took this role is because I learned that so many clinical trials don't get enough participants, which is such a big waste of money and halts progress towards, you know, better management and cures. So. So yeah, a few of the trials we talked about back then are full, but I think we talked a lot just about clinical trials in general. So I don't think it's, you know, completely out of date.

Scott Benner 6:44
Yeah, it's, um, it's hard to get people to do these things. And there's, it's, I mean, it's understandable why it's difficult. But to your point, they, they have these trials, they're like, look, we need X amount of people to do this. And if they don't get that many people then then the study doesn't happen. Yeah. You know, and it's not, I mean, there was a lady on maybe two months ago or so who was in the witch trial, was it the implantable cells?

Kim 7:16
But the vertex or

Scott Benner 7:18
the biocide stuff, right? Yeah. And, you know, she's an older person with not she was an older, older, but she she's a middle aged person who has type one, it's not going to benefit her, you know what I mean? And she still put herself through it, even in a double blind study where she wasn't even sure if she was even going to get the real thing or not. Right. And she let people she still let people like surgically implant pouches under her skin. You know, I just so amazing.

Kim 7:43
Yeah, I met another gentleman who did that study. And, you know, and I do, you know, hopefully, I'm middle aged, too. I hope hopefully, we still have lots of years to enjoy with or without insulin. But But I met a gentleman who did that study as well with the implantable pouches from biocide. He had two kids who are type one, so I think he was very motivated. For that reason. In that regard, too.

Scott Benner 8:05
Yeah. Okay, so is the thing about the thing, we're gonna be trying to talk right, it's gonna be in the title. Like, why am I acting like people were listening to like, I wonder what's coming next. That was the stupidest thing I've ever done. Your daughter's using? Alright, first of all, I might say it wrong. Is it a Frezza?

Kim 8:23
You said it perfectly. Okay. Yeah.

Scott Benner 8:25
When did she start using it?

Kim 8:27
So she's actually using loop. So she has a pump and an Dexcom so she's not exclusively using a Frezza she's still using her Humalog Well, actually, she tries a lot of different things. So at the moment, she has a mix of Liam Jevons, Humalog, and her pump. And she's, she's a, she's a clinical trial herself. So she's trying that out. But she started using a Frezza in addition to loop. Oh, I'd say bout probably about nine months ago.

Scott Benner 9:02
Okay. So let's, let's start slow. She's mixing two insolence in her pump. Is that something she's doing on her own?

Kim 9:10
Um, well with, you know, with with my blessing, and

Scott Benner 9:14
you know, yeah, I'm just saying it's not like, she's not in some sort of a trial.

Kim 9:18
No, she's not in a trial. I think um, you know, I think Arden did this too. She tried fie us and loved it until it until she hated it because it worked. And then I guess it stopped working after a while and so she had heard that mixing it helped but you know, that worked for a little bit while longer and then she she I we both had heard that Liam Jeff might work a little better and a pump them by us. So she's she's trying that out now. And yeah, someone Someone gave us the vial to try it.

Scott Benner 9:49
So with Arden it was the is it Fiat fiasco? Yeah.

Kim 9:54
Yeah, I think fast or

Scott Benner 9:56
whatever. And it's the one from Nova Oh, Nora, that's right. It works terrific for her burned. We injected it. Oh, okay. Yeah. Then we actually did try the loom JEV afterwards, and that was worse. So we didn't do either, but we loved how fi aspar five, how that how that worked for the Yeah, the onset to working was amazing. And it Yeah, it didn't give up she powered through. So that that one wasn't terrible. The burning garden stayed on that a month or so if I'm remembering correctly, and we had great results with it. The loom Jen, she made me take off inside of 24 hours. Oh, burn that badly. She's like, I gotta get this pot off. And I was like, okay, so bad. So I thought your daughter might be mixing it to try to cut down on the burning, but she was trying to get it to work the way it was working when she first use it.

Kim 10:51
Yeah, I guess the the additive that they put in both of those, maybe that's what causes the burning for Arden. But it also, I think sometimes can cause maybe a little bit of, I don't know, some kind of build up or something where it just doesn't work as well over time. So yeah, she's just hoping that mixing it will help it work better and longer. And this is relevant to a friend because right these are all faster acting insulins. Yeah, and these are Yeah, and they work great. And they work and they don't hurt.

Scott Benner 11:20
Yeah. So let's go over a friend for a second. Like it's inhalable. Yes, it comes only in certain measurements. I know. But I'm not sure which ones. Yeah. How did your daughter leave? She asked her, her doctor about it. And they gave her summer? Where did she get it from?

Kim 11:37
Yeah, so and what I'm going to talk about today is the clinical trial for pediatrics. And she's 16. So still falls in that. So no, was somebody that I met said, you know, this is really great, too, you want to try it and had some extra. So that's how she ended up trying it. And it was game changing she she uses it when she's so because she's on the pump with lube. You know, she's sort of fairly well managed with that. But the Frezza she uses primarily if she's high or stuck high, although she's never stuck high anymore because of her Frezza. So she'll use it. If you know if there's no opportunity to Pre-Bolus which you know, she's a she's a gymnast and a high school student. And so there's lots of times when it's hard to Pre-Bolus, so she can use it for that. But she also uses it let's say a pump fails, or hormones or sickness or whatever, myriad of things leave you over 200 Once in a while. She will use the A Frezza to bring it down and it's like boom, like ABC Action, insulin action time ever. Frezza is 12 minutes compared to because over 30 for insolence like Humalog, so she's never stuck high because as soon as she's high, she takes an A Frezza and it brings her down and then it's out of your system. So it's it really closely mirrors, insulin production and a non diabetic. So it is in quickly, but it's also out quickly. So it tends to just go down to where she wants it to go down. And you know, take some figuring out what dose you need. But it goes down to where she wants it to go down. And then it's out of our system. So she doesn't go low with it. Yeah, so in like an hour.

Scott Benner 13:27
So everybody that I've heard talked about, and there are people I'm online that are just they they're fervent about it, if it comes up, it's you know, they're almost like, let me tell you about Jesus. You don't I mean, they Yeah,

Kim 13:38
I really do love it. Yeah, it is kind of magic. Yeah.

Scott Benner 13:43
And so, I mean, for me, again, not a doctor don't know what I'm talking about. But I'm on a fresa.com right now. And the label warnings for this scare me differently than other things. Yeah. And so I know we're not going to try it. But I don't want to not hear about other people's experience. So So in it for an example, if if your daughter was to miss on a Bolus, just forget the Bolus something and suddenly had like a 300 blood sugar, you know, 45 minutes after chasing Oh my God, I didn't need them. My blood sugar's 300 She would like take a puff of this Frezza and how long to break that 300 and bring it back.

I do love a cliffhanger for the ad break. Dexcom let's talk about them. First Dex. comm.com forward slash juice box. I continuous glucose monitoring system is CGM. That's what the Dexcom is. tells you your blood sugar in real time on your Dexcom receiver or on your iPhone or Android. It's that easy. I'm actually working on getting a blood sugar down For Arden right now. And oh, this is interesting. So 20 minutes ago or so we made a Bolus to try to move a 166 blood sugar. And I've opened my phone now to see that her blood sugar still stable like the arrows telling me it's stable, but it's beginning to drift down, we have a new number of 161. But that tells me because I've been using Dexcom for a while, the numbers moving but the arrow hasn't moved yet. So it's probably going to maybe in the next reading or so indicate to me with the diagonal down arrow, that her blood sugar's moving. So think about this, not only can you see the numbers, but you can see the direction that the numbers moving in. And the arrows also tell you about speed. arrow straight down is moving faster than an arrow diagonal down two arrows down moves faster, the both of them, etc. You'll see if you get the Dexcom. If what am I sending if when you get the Dexcom you'll see how this works. It's the speed and direction and number of your blood sugar. At the touch of a button at your fingertips swipe up there it is Dex comm.com, forward slash juicebox. Now let's talk about that Omni pod five, and the Omni pod dash. Here's a couple of things you need to know on the pod is the tuples. And so on Bob, my daughter has been wearing it since she was four, she is going to be 18 Soon, she's had one on every day and that time, we love it. I think you might too. Here's how you find out, you go to Omni pod.com forward slash juice box, some of you are going to be eligible for a free 30 day trial of the Omni pod dash. That's pretty amazing. Go check that out. Some of you might just say hey, I'm gonna jump right into the algorithm. Give me that Omni pod five. That's another thing you could possibly do these things that you can do. They happen at Omni pod.com forward slash juice box head over there now and find out more tubeless insulin pumping means you can shower with your pump on swim in a lake. jump out of an airplane. You could I mean, I don't know why you would do that. But you could. Because there's no tubes to get caught on. Like imagine if you were like pulling your parachute and instead you pulled out your tubing. That'd be terrible on the body, no tubing, here's a promise I can make you right now. If while skydiving you reach and grab you will never grab tubing from your army pod to glistens on bump because it doesn't have it. Sure this is not a situation that's going to come up often. But you know, if you're plummeting from the sky, and looking for a parachute, pretty cool to know that you're not going to mistake your insulin pump tubing for that parachute. This is a reach here, but I've gotten a little farcical we're at the end. Now I feel bad about this on the pod.com forward slash juice box, find out about the Omni pod dash the Omni pod five, see if you're eligible for that free 30 day supply of the Omnipod dash. I just have to tell you now, for full safety risk information and free trial terms and conditions, visit on the vod.com forward slash Juicebox.

Kim 18:19
Podcast so the higher you are, the more you need. Right like you're becoming more resistant. Yeah, more resistant. And, you know, bless her heart. She doesn't miss a Bolus. So I don't know exactly. But there was a scenario where she had a pump fail. And it was overnight. So no one really recognized it for a while. And so she was floating up around over 250. And so I went in and you know, brought her an eight unit, a Frezza cartridge, and she took it and in 15 minutes. She was back, you know, in the mid 100, mid hundreds, maybe 140

Scott Benner 19:17
doesn't get low afterwards.

Kim 19:19
No, it doesn't. And obviously you need to figure out the dosing if she had done like a 16 unit cartridge, which we don't even have maybe she would have gone low. But it doesn't go low because it goes out quickly. So, you know, usually right? If you have a pump failure, you don't know, you don't know how much insulin you actually have on board. Right. So you might over Bolus or but with your Frezza you know, she does your Frezza and it's in it brings it down but then it's out. And so she doesn't tend to go low with the Frezza the way she might if she was stacking insulin, not really knowing how much insulin was on board with something like a pump fail.

Scott Benner 20:00
How long would you say? It stays in the body? Like, when do you stop seeing an effect from it even in a regular situation?

Kim 20:08
They say it's an hour and a half to two hours, that it's in the body. So, you know, it's in within 12 minutes, and then it stops in about an hour and a half. And sometimes it seems like it's even less than that. And and that's a you know, that's kind of the beauty of it. Because I think when you're in a situation where you're high sometimes, you know, maybe if you've listened to all of your podcasts, you know exactly how to bring it down. Right. But I feel like a lot of times when she's stuck too high, we might push it down. Too low. Not you know, it's just so hard to manage, because you're high for a long time. And you're like, wait, I'm still high. Do I give more. But the present works so fast that you can see oh, that worked. So now we can stop? Yeah. And if it starts inching up again, you can just give another another head, maybe a four unit Afrezza. Bring it back down again.

Scott Benner 21:02
Is it? Is it hard to figure out? Like what what is four units? eight units? 1216? Yeah,

Kim 21:09
I think four of us four, eight and 16. Maybe there's a 12. And we just have the foreign aid unit ones. And the it's equivalent, it's not actually four units, because when I first heard about it, I'm like, Oh, she doesn't ever use four units. So that's a lot. And you know, very different being 16 than 13. So probably she does now but but she if she finds a four unit, and most people do equivalent to like two, two and a half units, so it of Humalog. So it's, it seems a little different in terms of what the dosing means.

Scott Benner 21:44
Actually, I'm again on their website, there's a asterik it's talking about something but it indicates there's a four unit a 12 unit cartridge. So I mean, I know there's eight and 16 as well,

Kim 21:55
because yeah, okay, so there's those for you for different cartridges. Yeah.

Scott Benner 21:59
So is it basically marketed to people for like mealtime only?

Kim 22:04
Yes. So it's marketed to people for mealtime. And then they do a long acting shot with it.

Scott Benner 22:10
Okay, so yeah, so most people would do a Basal insulin injected, your daughter is actually looping with Basal insulin and then doing this for meals and highs or does she also use the loop for meals?

Kim 22:24
No, she uses a loop for meals. She just uses this in a situation where maybe she's like, at a at a birthday party. And there's a last minute thing that you know, Okay, everybody, we're gonna eat this and leave. And so she has the you know, she doesn't have to wait, you don't have to Pre-Bolus with the fries. I like your food comes at a restaurant you Bolus then. So in a situation where it's really hard to Pre-Bolus She might use it. But primarily she uses it for a situation where she's just high and stuck high. And then this just brings it down. So maybe, you know, there was a there was a situation the other day where she was at a meeting, that she had a school thing and her pump was expiring and she didn't have supplies with her. But the phrase is so tiny. She carries that it's easy. So she had that in her pocket. So even though she her pump was done, she just did some a Frezza you know, made it until she got home three hours later, and her blood sugar was perfect. So she uses it more in those situations. So, you know, maybe a couple times a week, but it is marketed as a mealtime insulin, but because we love loop, she's she's kind of using both

Scott Benner 23:33
as well. I was gonna ask you about how frequently do you think she's using it? But a couple times a week? Yeah. Yeah. Is it cutting down cutting down on lows on the other side of highs for you, as well as limiting the amount of time that she ends up spiked?

Kim 23:49
I think when she uses it, she doesn't go low. You know, because of loop suspending insulin. She doesn't go low that often. But you know, she's also a competitive gymnast. So that makes just everything hard to manage. So she still, she still has occasional lows, but not not from the Frezza.

Scott Benner 24:11
Do you ever get confused? When she's having an issue? Just meaning anything that's out of the norm for you? Is it ever confusing about which insolence doing it? Or does that not matter? Because you treat the situation the same way?

Kim 24:26
I think you know, she's very self managing. So I'm not even sure I can answer your question. But I think with the Frezza when she does the A Frezza she doesn't do anything to loop. So it tends to suspend because it sees that she's going down really fast. So it's kinda like she's not getting Humalog when she does the A Frezza. So she knows that hey, if I'm, if I'm at 210 and I do a four unit cartridge of a Frezza that's going to bring me It's a 120 study. And it doesn't seem to be confounded by by the human log. And I think it's because just because the insulin action at the Humalog is so much longer that even if she has some insulin on board, it's okay. But I think, you know, she takes that into account too. Like she got five, eight units on board because I've been, you know, my pumps, my my loops been trying to push down this high, she might do a smaller dose of her Frezza.

Scott Benner 25:29
Okay, so let me ask you, how much input? Did she come to you with this idea? Or did you go to her with it?

Kim 25:40
Oh, third party came to us a friend was like, you should try this. It's a great tool to have in your arsenal. And she's like, Yeah, cuz, you know, it's, she wants to be well managed. She hates to have high blood sugar. So she was just gung ho about trying it. Yeah.

Scott Benner 25:58
Did you look into the safety data about it before you let her do it? Or did you just try it? Or what did you do?

Kim 26:06
Oh, yeah, I read everything. I mean, this is, you know, part of the reason I like this role of educating people about clinical trials, because I want to know all the details, like every every drug every, all the research that's happening, I am just, I'm obsessive about it. So yeah, I looked into it, you know, read the history of inhaled insulin, which is really fascinating. Like, right after the discovery of insulin, they started working on an inhaled insulin just took a really long time.

Scott Benner 26:33
In the 20s.

Kim 26:34
Yeah, in the 20s. In Germany, I guess they started working on it and inhaled insulin. That's crazy, took so long. And then this insulin called exubera came out, maybe in the early 2000s. But it failed for a few reasons, I think primarily, so this huge device that kind of looked like a bomb to inhale like, couldn't carry it around. Although I am waiting for my daughter to get busted for vaping with her friends at school, because now it's like this tiny thing. But

Scott Benner 27:07
anyway, I have some marketing materials from exubera. It's an E X, E R A. And my goodness, yeah, it looks like a flashlight. Like, it's like a big flashlight. And the girls like it. It looks like a bomb, basically. Yeah.

Kim 27:23
Okay. Does it does I think if present maybe did a little more consumer research. Or maybe maybe things evolved that they were able to bring the size of that down?

Scott Benner 27:31
always reminds me of a whistle. Yeah,

Kim 27:34
yeah, it looks like a tiny whistle. Yeah. Yeah. Very convenient. Very, yeah, very easy to just stick in your pocket. So yeah, I mean, I definitely read, you know, a lot of, you know, a lot of patients in the adult clinical trial, which, you know, happened, I think, I think it was like 2014, it came on the market had a cough. And, you know, that could be uncomfortable, but that would tend to go away. And, and probably the thing that you saw the warning was to have two adults in the adult trial develop lung cancer. But that was 2750 patient years of data, and the FDA approved it, saying that that was no more likely, no more or less likely to happen in a general population of that many adults. And those two people also had a history of smoking. So yeah, you know, right now, my daughter has been prescribed for, you know, painful cycles, birth control, and I'm like, investigating all of the different options. And there's something scary about every single one, you know, no, I, I really couldn't figure it out if you reasonable and take it into account, but it's hard. Yeah,

Scott Benner 28:56
no, I, I understand that. I mean, drugs in general, I think make people's lives better. When they're used well, and that, like, you're saying that it's not going to work great for everybody. And yeah, you know, there are it's tough, though. I mean, you know, it's it's basically right on the front of their page, it says a Frezza can cause serious side effects, including sudden lung problems. And you know, do not obviously don't use if you have long term chronic lung problems, asthma or chronic obstructive pulmonary disease, etc. See your doctor, but I mean, sudden lung problems like that's like a bet. I don't know. That's a tough one for me, because are they sudden lung problems that go away if you stop or are they sudden lung problems that you it's sort of the way I feel about getting corrected by surgery? Yes, I think it would be a great idea unless I'm one of the people that gets halos. And then I'd like a time machine, please. You know what I mean, like, absolutely. Yeah. I just wondered.

Kim 29:53
So the way you know, the way I felt about that, investigating it further was those sudden problems go away when you stop I figured, you know, try it, if it, you know, gives her, you know, sort of bronchial spasms or cough that's uncontrollable, and she won't use it anymore. So she does have mild asthma. But she did a pulmonary lung function test, she had done one earlier just to see if she should take an asthma inhaler or not. But they do recommend that you get that done when you take a Frezza and and get it done, again, six months later, and the clinical trial, they will do that for you. So they're keeping an eye out for that and making sure that, you know, your lung function is fine. But it's evidently something that just goes away when you stop taking it. So if you have a problem, you just stop taking it, and then that cough or the acute bronchial spasms, go away. Not everybody gets that. And yeah, they do have a warning on it. You know, don't take this if you have asthma that said my daughter does, and she's fine with it, she doesn't even get the cough. And there's a hack. Like if you drink a little water before and after, and you keep it at room temperature, you're way less likely to, you know, even get that like mild irritation from inhaling it. But you're inhaling something. Yeah.

Scott Benner 31:09
Right. Bronchial spasm sounds like a, like an awkward dinosaur tummy.

Kim 31:15
does, doesn't it? Yeah. And I, you know, I'm not a doctor, but it's, I think it's, you know, it's just a key, it's an acute thing that, you know, let it calm down, it'll go away. It's not right. Is it?

Scott Benner 31:28
Is this something that you've noticed? And she's only been doing it for a short time, but have you seen improvements in her time and range her a one C? Or is everything kind of just the same, you're just managing it differently?

Kim 31:46
You know, think there's definite improvements in time and range, because she doesn't stay high for more than, you know. You know, sometimes she might not, you know, take the Frezza right away. But if she takes it right away, she's not high for more than 15 minutes. So it really gets rid of highs. And again, it doesn't cause lows. So see, our time and range is better. I know, in the adult clinical study, that the time and range, you know, increased two hours a day. So I think it can have a huge effect on time and range. Don't know what her or anyone sees usually in like, high fives, low sixes, I think it's not that different. But it's probably a little better since starting a Frezza.

Scott Benner 32:41
This is like one of those things where you're looking for a problem, but it's still popping into my mind enough that I'm gonna ask, Does the fact that it works so quickly? Can it make you ignore that you need insulin? Like, do you mean, can you get too comfortable? I guess it's not that you could ever be too comfortable. But you know what I mean by that, like, can you kind of get can you get kind of laissez faire about it? Because you'd know how quickly it works? Or have you not noticed that?

Kim 33:09
That's an interesting question that you might have to ask my daughter. Yeah. Yeah. I don't know. I mean, I think she's 16. Yeah, so you know, I mean, I can only imagine that it might not be as terrifying to go high. But you know, everybody it happens though, right? Like, you go high, whether you want it to or not, you're gonna have hormones, you're gonna have sickness, you're going to have pump fails, you're going to have temptations or food coming at a restaurant when you didn't know when to Pre-Bolus Like, these things are just going to happen. So you know, I don't know whether, you know, it makes her act differently. But when these probably not, she's a very, you know, she's, she's always wanted to manage really well. So I don't think she's not a laissez faire kind of kid. But could that happen? I guess so.

Scott Benner 34:11
No, I it's funny. I don't even as I asked the question. It's not even something I'm wondering about as much as I'm wondering if somebody else would wonder about it. So yeah, I just asked it that. Yeah.

Kim 34:20
Yeah, I mean, but then again, it's like loop like it's or, you know, Omnipod, five or candidum control like you like, these things don't necessarily make your time and range better, although they often do. I think primary The primary benefit is just giving your life back and making life easier. And I feel like that's what our Frezzer really does, is she's, you know, she's not in the middle of an AP test with her blood sugar going up and going. Doomed. She's like, Yeah, I can fix this. It's okay. All right.

Scott Benner 34:55
That sounds I mean, it really does sound terrific. I've never not thought it didn't sound good when any But he's explained it to me to be perfectly honest. It's yeah. I mean, I'm just being perfectly honest, like something. Inhaling something unnecessarily seems weird to me. But, you know, I don't know. And I know people say, Oh, that people have been using it for a decade or longer. And, you know, they have data now. And I mean, that's Yeah, but I'm not. I don't know.

Kim 35:22
Yeah, it's newer. I mean, people have been, you know, I mean, if you if you sort of looked at inhaling versus injecting, and they were both as new, you might be like, Well, I'm not going to inject something. I don't have to inject. But now we've been doing that for 100 years. So there's, there's more data for sure.

Scott Benner 35:36
Right? Yeah. Right. It's just like, right, nothing about using a liquid insulin is gonna make your lungs stop working. So, yeah, well,

Kim 35:45
and, you know, the, you know, I've been, I've been inhaling, you know, albuterol for, I don't know, 35 years, and Steroid inhalers. And so maybe having asthma I'm, I'm really used to inhalers and they've made my life better. So. Yeah, so I'm not, you know, and then the, the technology is getting better too. Right. It can be you know, I don't understand the material science so well, but they can break things down so that they're just doing what they're meant to do. Now, you know,

Scott Benner 36:18
the molecule passes easier. Yeah, they refine Yeah,

Kim 36:24
it's tinier. It's yeah. But I just, you know, for me, it's just like, wow, this is just, it's just game changing. So I, you know, I want people who want to try it, to have that opportunity. And so, I think it's, you know, it has been on the market, people have been doing it for 10 years, it's been approved for adults and feel like kids more than adults, you know, need that spontaneity need to be able to eat without Pre-Bolus Singh needs to be able to, you know, bring down highs more quickly. So, you know, as adults, I think, you know, maybe you're more inclined to like, okay, my blood sugar's high, I'm gonna go for a walk, I'm going to Pre-Bolus and eat in 15 minutes. And, you know, my kid wasn't diagnosed till 13. So she was already, you know, managing pretty well, but I just feel, I just feel for families who have younger kids, and and I want them to have the opportunity to try this if they want to. So I am telling people about all the clinical trials that are going on, whether it's cure research, or device research or insulin research, but this one is one that I'm really passionate about, because I've seen how well it works for my daughter. So. So yeah, so now that they've got the clinical trial for kids, and it's a phase three trial, so they have tested the safety. And they've tested that it works. And so now they're on the phase three trial, which is just trying it in a broader population of four to 17 year olds, and and I hope it, you know, fills up quickly so it can become available to other kids

Scott Benner 37:59
question about the trial, do you get the drug through the trial?

Kim 38:05
Yeah, so the way the trial works, it's a 14 month trial. So it's long. And for the first month, they kind of do some tests, you know, test your agency do the pulmonary or the lung function test. And, and then for the next six months, they have I think they have twice as many people doing the Frezza as shots but they have a group doing shots and a group doing a Frezza. And then for the second six months, everybody does a Frezza for mealtime, insulin. And then then there's one more month where they do some follow up. And, and that's it. So it's 14 months in total. And they provide you with the inhalable insulin, they provide you with a free Dexcom for the entire year of the trial. Fun. Yeah. And then they also pay you I think it's around $750 to participate.

Scott Benner 39:05
Is that still going on? Could people get into it right now?

Kim 39:08
They could, yeah. And they have 17 locations throughout the United States. So everywhere from you know, California, Florida, Indiana, Texas, Tennessee, you know, 17 different locations. So it's all over the US. And you go into the office just a few times. So even if there's not a site like super close, it's still possible to do it. Most of it is done remotely like they give you the stuff to give you the goods and send you home. And and to find it I think people just Google a Frezza and clinical trials.gov. They can find it that also the name of the study is inhale one. So that's another way to find it, but I think just Googling a Frezza it's a Frezz a and In clinical trials.gov, or pediatric clinical trial, they'll come up with the study. And then if, if they scroll down to the bottom of the information about the study, they can see the locations with phone numbers and emails. And so what they'll want to do is contact their local Study Center, the one closest to their home, and ask about getting into the getting into the study or ask for any clarifying information they might need the, you know, I, I know a tiny bit about many different studies, but the study coordinators know everything about this study. So they're the ones to contact for more information.

Scott Benner 40:37
Yeah, excellent. What? Are there any other studies that you want to share with people that are happening right now? Oh,

Kim 40:46
yeah, there's, there's a couple other studies

Scott Benner 40:49
on if someone would know, it would be you. So yeah.

Kim 40:53
Let me just pull up my list to see what I think would be most helpful to share. Some of them I stay, stay really on top of Northern California. But I mean, you've talked about this a ton on on your podcast, so I don't necessarily need to repeat it. But I think, right now, it's more important than ever to get loved ones screened for antibodies through trial net, or to end detect is another way to do it. But trial net is free. And trial. net.org is where people can go to find out about how to get test kits sent to their home to screen siblings and other family members to see if they have antibodies that will determine their risk of developing type one. And I think this one's more important than ever, because to lism AB, which was in clinical studies last year is on the cusp of being approved by the FDA and has been shown to prevent the onset of type one for three years, on average. So if you have somebody who is at risk of developing type one in your family, I know a lot of people used to be like, Oh, do I even want to know, I know, I recognize the signs and symptoms, but and it's I think it's always been important to avoid people from getting diagnosed in DKA, or having it get too bad. But now it's even more important, I think, know that. That that's available, and then you can find out that there is a risk. And I have to say when my 12 year old did the trial net clinical study, she was really, I think, grateful. She's She got a little shirt that said, I'm contributing to science. And I think she was grateful to be able to do something like feel like she was contributing to her sister's disease. So I didn't mention that. But I and I'll mention one other clinical trial, but I feel like one of the big benefits to being in a clinical trial like this and Frezza one or any other clinical study, not so much with TrialNet but is you get a generally kick ass endocrinologist to stay with you over the course of a study and, you know, give you advice on dosing and other things that you might need to manage your diabetes better. So just that relationship, it's like having an extra endocrinologist who is really at your side, guiding you through these studies, but also guiding you through your diabetes journeys. I think a big benefit, and a lot of times these researchers who are the, what they call principal investigators on these studies are some of the, you know, some of the, you know, world renowned endocrinologist and it's, it's great to have them working with you and answering your questions and learning more from them.

Scott Benner 43:44
People paying attention to the cutting edge a little bit. Yeah. And there's a heart and they're a sounding board if you need them. Yeah,

Kim 43:51
yeah. Yeah. So the one other study I'll mention is it's dump a it's D O M, P E. And this is the one study that I know of right now. That is for people who are recently diagnosed or diagnosed within the last 120 days, which is a little bit better than some of these past trials, they wanted to get you in three weeks. And they want that because they're trying to help you preserve the beta cell functionality or the insulin producing cell functionality so that you stay in the honeymoon longer. And there's a lot of benefit to that. So the dump a do NP E is an oral drug that's thought to preserve the beta cell functionality. And it's it's also offered in a bunch of different locations. So you just have to, again, Google don't pay and clinical trials.gov. And this, I wish this had been around when my daughter was diagnosed because she's needle phobic. So the idea of doing the studies that were available at the time, which required an infusion of you know, sitting there with a needle in your arm, but we're not just not viable for her but this one is a an oral drug that you take at home. So you, it's 10 study visits over a year. Like with all these trials, they generally they provide you a Dexcom. And then they give you the pills, and you take this at home, and it can help preserve the, you know, the honeymoon period and make your diabetes easier to manage for a longer time period. And then I always think, like, it's great to preserve that, you know, insulin producing cell functionality, because there's other things coming down the road that, you know, maybe can make them work better again, and you know, like, I just feel like, the more you can do this, or stay in that state, the better. So, that's another trial I'd love to share with people.

Scott Benner 45:43
Cool. Yeah, I know the lie. No, I'm imagining that Tomislav is getting close to something because they're on my schedule this summer to record Oh, good. I mean, I don't know why they're coming on. But I didn't imagine that they contacted me and said, hey, we'd love to share bad news with you or tell you how we're refurnishing the offices or something like that.

Kim 46:07
Oh, that's great. Glad you got that little hint there. No, I definitely expect that to be news that we hear hear about soon. So yeah, I guess it's almost summer. So that's

Scott Benner 46:17
yeah, you know how like you hear on your favorite radio show, like Robert Pattinson is going to be on and you think he must have a movie coming out? Maybe we'll find out one day. It is fun to not know anything and sort of know something at the same time, because I really don't know anything. And then, but I mean, they are right there on the schedule, I think in August may be good anyway. That's excellent. Do you ever get tired of this burned out from it being involved with these things?

Kim 46:49
Oh, gosh, no, I mean, being involved. Like I, first of all, I am so grateful, you know, to work with the people that I work with at JDRF. Because they're brilliant. I mean, I feel like, you know, just people get involved because they felt loved ones with this disease. And then sometimes they're, you know, they've, they've run companies, they're doctors, they're, you know, like, the people that I interact with, who are all working towards, you know, better management and a cure for type one I just feel so blessed to be working with. And I feel lucky that my job is to keep up on what's the cutting edge research and diabetes care. Because I want, you know, I want to know, and from the minute my daughter was diagnosed, I wanted to know, what can we do about this? Right. And it's, it's a disease, it's a little bit out of our control, but it's also within our control on a day to day basis. And on a, you know, let's see what what's coming down the pipeline to make this more manageable? And then getting people into these studies is, I think is really going to make a difference, because no idea. Yeah, I mean, we're all like, either donating our money or our time, or our expertise. And this, to me, just like, leverages all of that, because, you know, a lot of the money is going to this clinical research. But if this clinical research doesn't find the people to participate, then, you know, it's more expensive, and it takes longer, and we all want this to happen as fast as possible. And it's also right now, it's just so exciting. I mean, there's so much going on in terms of both, you know, all these, you know, all these closed loop systems getting approved, and the research on insolence that are going to work faster and better, whether they're inhaled or injectable, or in a pump, you know, there's research on you know, faster insulin insulins, insulin that, you know, is just recognizes when you need it, like Foucault's responsive insulin and, and then this cure research is just, it's, it's such a, I think we're just at a really exciting time, where there's a lot that can happen, and you know, if if people just, you know, got focused on working on it, and I want to do whatever I can to make that happen faster. So, yeah, no, I feel really constantly just excited by what I'm working on.

Scott Benner 49:18
It's interesting. Sometimes you see someone online, they're like, You know what, they should hurry up and do this or this. And then you say, like, have you done, you know, anything? Like involved with research now? I'm not doing that like, Okay, well, that's why it doesn't go faster.

Kim 49:33
Yeah, and I'm, you know, like I said, I'm not a scientist, I'm not a doctor, I don't have any background in any of this. So anyone could do this, right? Like, just read about these things and try to understand them and then tell people about them. And I feel like in some ways, it's it's almost better, you know, if you can communicate about it in a way that other people understand because you don't know all the details of the medical, you know, and I think just a lot of people want to do this like they want to get in Follow up, like you talked about that that woman who just did this study, because you feel like she just wanted to give back. You know, there's a lot of selfish reasons to be part of studies, like I said, just, you know, getting to hang out with these top endocrinologist getting free devices getting, you know, the latest cutting edge, you know, drugs or devices, like there's, there's a lot of selfish reasons to be involved in a trial. And then, you know, to just give back and help everybody else that's going through this, I think, is something that motivates a lot of people to like the way to help help. Like, I think it just helped my my younger daughter to be a little bit involved. So I think the biggest issue with clinical trials is people just they don't know about them, they don't know how to find them. And so I think it's, you know, wonderful that, thank you for having me back on and having the people from, you know, TrialNet and other places on the podcast, so that people just can find out about it, and then make their own decisions about what they want to do about it.

Scott Benner 50:58
That really is the case, they just need to be aware, and then they can decide what to do.

Kim 51:02
Absolutely, yeah, but that awareness is I think, a little bit lacking, like, you know, when when I met when my daughter was diagnosed, it wasn't like, let me tell you about all the clinical trials she can participate in. And I kind of would have wanted to know, like, I feel like we're doing a disservice to people if we don't tell them, but I think a lot of times, endocrinologist, either they don't have time. Or they think, Oh, that would be too overwhelming. And I just think we should give people the choice.

Scott Benner 51:27
To prove your point. I get paid every time somebody signs up to the to 1d Exchange survey. Because it's that hard for them to find people. Like it's so difficult for them to find people that they had to come to me and say, Can you please direct people to this thing? Here's an amount of money we can pay you every time somebody finishes the survey? Well, that's not you know what I mean? That's not what they want to do. They want to keep that money for something else. But instead they're out incentivizing. It's not just me, it's other people too. But sure, you know, and it's just and so they're not advertisers. So they don't pay me like a set amount of money every week, right? I make based on how many people sign up a month. But you'll hear me on every episode say like, you know, if you're a US resident, or you're the caregiver of someone with type one, who's also a US resident, Baba ba T, one of the exchange.org forward slash us like go, it helps people, it helps people it helps people like in the ways it helps is to almost convoluted you don't mean like, I just need you to believe it helps people and you're just filling out a survey. It doesn't even take very long and still difficult to get people to do it. Yeah, you know,

Kim 52:39
yeah. Obviously, they're finding it worthwhile in terms of the money they're spending to pay you to send people to this and fill it out. Oh, why they're benefiting? You know,

Scott Benner 52:51
I hear Kim that the podcast puts people on the survey at a at a much greater rate than other places, though. Yeah. But it's but that's not really the point. The point is that is that someone has to spend money to get people to take a frequent survey, because it's that hard to get people to take a survey. And you're talking about like, swallowing a pill for 14 months. Like, will you get a free Dexcom? And most people have insurance like yeah, we kind of get a free Dexcom already, like doesn't cost me that much, you know? And yeah, and the people who could probably really use it might never hear about it. To your point. Yeah, because doctors don't talk about them. I've never once been told about a trial a doctor's visit. Never.

Kim 53:31
Yeah, yeah, no, absolutely. It's interesting. Ya know, you have to figure out why, like, why you'd want to do it for me, you know, and again, it's my daughter, so it's up to her, it would be the motivation would really be to get to make her life better, like I would do, she would have done this a Frezza trial, but you have to be there with your friends at trial. You have to be on shots for two weeks before you do the trial. And then there is a there is a group that stays on shots for six months. And like I said, my daughter's needle phobic. So this is not a trial for her. But she loves the A Frezza she'd be happy to try it for her mealtime insulin for over a time period. Have a

Scott Benner 54:08
question about that? Yeah, when the first trial ends. It's not how she couldn't get it anymore, right? It'll just though she'll be done getting it and then she'll have to hope they get it approved for the FDA for her age range. So that it can be is that right? Well, I think the

Kim 54:24
benefit of this one and that does happen. Like you could go through a trial and be like, wait, wait, give it back. Eventually, it does come. I mean, I have a friend who did the Dexcom g7 trial it was like okay, you know, can I keep out? Soon enough?

Scott Benner 54:43
I've heard people talk about it with the pod five. I mean, the woman who was not talking about the vitae site, you know, it's double blind you don't know if you got the medication or not. But she said that her blood sugar's were easier to maintain and etc. And like I'm like, Oh my God, they're gonna take those out of you one day. Right. Like I'd run away if I was you, like, I'd go, I'd be like, I gotta go, you know? Yeah. So

Kim 55:05
there are times, you know, I mean, with Omnipod, five, they, you know, they let the trial participants get the, you know, the pre release. And so there was a, you know, hopefully not too much of a gap for people who did that trial and then got to actually use the product. But for the Frezza trial, it's a little bit different. And again, it'll depend on your endocrinologist, but my daughter gets his prescribed from her endocrinologist, even though she's 16. And it's only approved for 18. And up it's a it's an off label prescription, and they absolutely have the, you know, prerogative to do that. Mankind corporation who makes a phrase also has a list of endocrinologist who prescribe it. So you know, you can figure out a way to get it if if you want it, even if you're a kid. Yeah.

Scott Benner 55:51
It's nice that you brought that up, because as an example, right now, on the pod fives out in the world, and people are like, well, it's not approved for my insulin, and I answer as many people as I can I say, Look, I'm not a doctor. I don't I don't work from a pod. I come from No, no positional power in this scenario whatsoever. But they didn't test it with your insulin in the FDA trial. They didn't say it doesn't work with your insulin. They say they didn't test it with your insulin. Yes, exactly. And then you're like, the feel the rest of what I'm saying here, like, you know, because people are like, are you going to use a pager and on the pod five? And I was like, yeah, that's that's the insulin rd uses. Right? Yeah. Well, it's not it's not it's not. They said, it doesn't work. I'm like, nobody said it didn't work. What they said was, they didn't test it. And so it's little nuances of, you know, everybody's covering their, you know, there are people covering their butts legally all over the place. Most people can't hear through the nuance of the conversation. And then they get stuck saying, Oh, I'm not allowed to do that.

Kim 56:56
It's an important point, such an important point with this disease, because we know so much by managing it at home on a day by day, hour by hour basis. We can't Yeah, and I mean, that's, you know, certain devices are only approved for, you know, the arm, but that doesn't mean they don't work wonderful on the calf. Yeah. I've tried it. No, no, no. And ran that through a clinical trial be so expensive to like, do that clinical trial with every part of the body? Just couldn't? Yeah, isn't

Scott Benner 57:22
it funny people like I need this stuff right away. I'm like, you know, we'll every place they tested on every insulin they try it with is going to elongate the testing process, the FDA and elongate that process. And it's not that it wouldn't work out. It's not that you can it's not that you couldn't wear your insulin pump on your calf. Yeah, it's that is that the company locked in when not enough people are going to try this to make it worth the amount of time it's going to take to get through the FDA.

Kim 57:49
Yeah. And I will tell you, we had the opportunity to try a Frezza without a prescription because someone gave it to us. But then I wanted to get our own prescription so that I could keep getting it because it worked so well. And I switched windows to get it and you know, it's not just Yes, I want to Frezza. So I'm going to switch into this, but I want I want somebody who is going to be thinking a little more flexibly and not going to sort of just put up barriers. So there are some people who will not prescribe something off label. But I you know, I mean, first of all, like I know now a friend has been through trials with pediatrics, and it's been totally fine. But my daughter is 16 she's, you know, she's the same size as I am. And I'm, you know, older than that. So, you know, the

Scott Benner 58:38
other day we took so you mentioned all your daughter's cycling through, like hormonal birth control hormone tried to, like, take care of a problem, right? Yeah. So Arden has that issue as well. And you know, sometimes she's she still has some sort of residual stuff. We're trying to figure it out. So we're up to the point where she's gonna see a GI doctor. So we find the best GI doctor, we can make the appointment, I call up. I said, Hey, I'm calling from my daughter. She's a minor. Okay, blah, blah, blah. You know, we get the appointment, we wait five weeks for the appointment, she has to take off school to go my wife takes off work. We all drag ourselves over there. We fill out all the paperwork that the place has. And we're sitting in the outer office, they Mr. Banner, could you come here from my coffee window? Because I'm so sorry. This is so strange. We can't see your daughter. She's a minor.

Kim 59:22
No. And I said, and she's like, almost 18

Scott Benner 59:25
I'm like, I'm like, Yeah, I mean, she's 17. But she'll be and so literally aren't going to be 18 in under 60 days. And I said but she'll be you know, in under 60 days, she's it's, you know, it's okay. You can say no, no, we have. And so it turns out, it's about their insurance. Of course. They're only covered to help people over 18 years old. And I said that this is ridiculous. Look at her. She's a lady. You know. She's got all the lady bits and everything. She's totally a lady. And you know, like, let's do it. And no, a bit of a tussle in the chem I might have been unnecessarily loud. I got upset, because Arden's in pain. And they're like, called the Children's Hospital. I said the children's hospitals just gonna go by the book, they're gonna tell her she's fine. And then that's going to be the end of it. I'm like, we need you. We need a ninja in there looking around. That's why we're here. We understand we can make you an appointment for after her birthday. Oh, my God. I said, but she's going to be in pain between now and then that's okay with you. Nothing we can do about that she could go to the Children's Hospital. Oh, I'm so sorry. They were, trust me the people saying it. They didn't want to be saying it. They were just following some arbitrary rule that they set up. And now is how we do it and blah, blah, blah. And you don't you're right. You don't want an endocrinologist As another example, who talks to you that way about diabetes, about like, oh, no, it's not okay. Or it's not this or it's not like just Arden's tried. I mean, the r&d has been great. Every time we want to try different insulin, I just send them an email. I'm like, Okay, can we try fiasco short here comes description. You know, no big like, well, we'll have to get you in here and talk to you and run you through the mill. It's just like, yeah, sure, given. You know,

Kim 1:01:13
it's yeah, it's not always the case. So that's really nice.

Scott Benner 1:01:17
Not at all. I know. Is there anything that we haven't talked about that you want to talk about?

Kim 1:01:23
Um, no, that I think we should we should connect offline about these other issues that you were at the doctor for.

Scott Benner 1:01:30
So Oh, because you might have some thoughts, or you're wondering what we found out? both Yeah. Yeah. Well, why don't we just say goodbye. And then we'll talk right now. Oh, it sounds great. All right. Cool. Well, thank you for doing this. Kim. I enjoyed having you back again. I hope you do it again.

Kim 1:01:45
Yeah, wonderful to be back, I will come back to share their trials.

Scott Benner 1:01:48
Excellent. Hold on one second.

I have found Kim to be delightful both times I've met her and I really do appreciate her passion around these clinical trials. If you're looking for that a Frezza clinical trial, I have the link here. I can't read it to you it is way too long. But I can tell you that I got to it by googling. Inhale one, that's the number one a Frezza. So it's inhale, classic spelling of inhale, one of Frezza and you'll find it right there. It's at clinical trials.gov. Thank you so much to Kim. And thanks to Dexcom and Omnipod, for sponsoring this episode of The Juicebox Podcast. You can learn more about the dexcom@dexcom.com forward slash juicebox more about Omni pod at Omni pod.com forward slash juice box. You can learn more about all of the sponsors. In the show notes of this podcast player that you're listening in right now like in your apple podcast app or something like that. They have a show notes section you can find it or these links are also at juicebox podcast.com. It helps me a great deal if you use my links when you're finding out more about the sponsors. Like don't get me wrong. If you end up in your doctor's office one day and you're like Hello, doctor. I would like to get an omni pod. I still feel good for you. I'm super excited about that. But you know what I'm saying like I don't get no credit for that. So use the link, please. dexcom.com forward slash juice box Omni pod.com forward slash juice box. links in the show notes links at juicebox podcast.com. Got a great episode coming up for you on Friday. Hang out. And what else? Oh, I have that thing about the insulin. Yeah. Oh, I know what I'm gonna get I know what I'm going to give you next week. Oh, you're gonna love it. Love it love. Very interesting thinking of it actually a number of things. I could look here and tell you let me take a look. Thank you know what the Why Why spoil the surprise, right? You just subscribe in your podcast app and next week, the episodes will pop up and you'll get new ones. That's what I would like from you. If you could just do that. Please, to be perfectly honest with you. If you're listening and you're not subscribed in a podcast that you make the inside of me sad by not doing that. Please don't make me sad subscribe and a podcast that. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Did I do that already? I don't think I did. Let's just let it go. If I did already, then you heard it twice. And it's a free podcast. Stop complaining.

#691 'Mom' Guilt

Erika is a licensed marriage and family therapist who herself has had Type 1 diabetes for over 30 years and who specializes in working with people with diabetes and their families and caregivers—from those newly diagnosed to those experiencing it for decades. She and Scott discuss ‘Mom’ Guilt.

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Scott Benner 0:00
Hello friends and welcome to episode 691 of the Juicebox Podcast

Erica Forsyth this back today she is a licensed marriage and family therapist who has had type one diabetes for over 30 years. You can catch Erica on episode 407 emotions a diagnosis and diabetes distress episode 445 supporting caregivers episode 473 Sneaking food episode 479 teen talk, Episode 514 sharing the care of a type one child episode 576 Hard type one questions from kids and episode 659. Burnout today, Episode 691 is about mom guilt. And I have the mom in quotes because it's really about guilt for both parents and adults living with type one. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. I have a couple more little announcements here after the music then we're gonna get right to Erica

this show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored by the Contour Next One blood glucose meter. You can learn more about Ardens blood glucose meter at contour next one.com forward slash juicebox. And today's podcast is also sponsored by us med get your diabetes supplies at us med.com forward slash juicebox. Whereby calling 888-721-1514. Recording Here we go. So we are recording now so you know. And just give me any words I can make sure you're on.

Erika Forsyth, MFT, LMFT 2:18
Okay. Good morning, or good afternoon.

Scott Benner 2:21
Yeah. Okay, you and I are doing something. Let's let Pete I don't usually let people in on this. This is going to be an episode that gets recorded and posted in the same 12 hours. Which that's exciting because today is May 30. Tomorrow, May 31, the last day of mental health awareness month. That's right, right. So we didn't do that on purpose. But hey, what the heck, let's act like we did this out. But I think people who listen know that I'm not the guy who's like it's Father's Day do Father's Day stuff. But this just worked out really well. And I have a topic that I sent you I forget how I asked you. I was like Is this a real thing? Like, like, you know, something that the doctors believe in? Because I think mom guilt is a real thing. And I want to talk about it. And you were really open to the discussion. So I appreciate that very much.

Erika Forsyth, MFT, LMFT 3:14
Yes, yes. And I think it is it is a real thing. I think we could we could open it even further to mom guilt dad guilt, or caregiver guilt. Just because that's where we are in our day and age. Yeah,

Scott Benner 3:32
no, I think that too. Like I am interested if it's something that strikes females differently or harder but I don't know if that's something you can quantify or not. And you know, I mean I'm a I've been a stay at home dad forever. You know, I think I I quit my job a couple of months before my like a month or two before my son was actually born in 2000 So this is my 22nd year of being a stay at home dad I guess technically I'm more of a podcaster now but that's not really the point. And I felt the pain but I've been much more able to just not give over to it as much and I am wondering if that's person to person you know, I'm endlessly fascinated with people Yes, mental health and why decisions get made or why things happen that aren't even decisions so let me first ask you do you think it that there is some sort of physiological change that happens when you become a parent?

Erika Forsyth, MFT, LMFT 4:34
Yes, I probably couldn't probably speak to the old the science behind it. But I think just naturally your everything changes in terms of how you spend your day, your time your focus your priority. And I think that happens for you know, all genders. I think your your initial question of you know, is it are women or moms more prone to it, I would say probably due to gender stereotypes or gender role expectations. Stereotypically, moms may do better at that, so to speak. Yeah. But I think it can definitely both both moms and dads or any caregiver can experience this type of guilt.

Scott Benner 5:27
Are I know you this is not your area of expertise. But do you think hormones have any impact on it for women?

Erika Forsyth, MFT, LMFT 5:33
Hmm. I don't know. That's a great question. I don't know. We'll have to dig into that.

Scott Benner 5:39
One thing I can tell you for sure. Is that, that when we had our son, pretty young, I don't know how much I talked about this, like my wife was, I think, 22 When we got married, and I think that was in 1996. And four years later, look at me, I was like, when was that? And four years later, in 2000, Cole was born. So we were married for years or so. But Kelly was still just like, 26. And not that she wasn't always, Kelly's always sort of been like a hard working mature person. I don't know another way to put that. But she really was when I met her a person who's like, I'm gonna grow up, I'm gonna go to college, I'm gonna go to New York, I'm gonna work, I'm gonna have a white sofa, like you don't I mean, like, I'm gonna live by myself. And even when we were married in the first few years, I mean, that's pretty much how she was. And right now, she's downstairs. And if you said anything bad to my children, or about my children, she'd get a bat and beat you to death with it. So I don't know why that what happened to her. But it happened. It felt pretty instant. It really did. Yeah, it felt instant.

Erika Forsyth, MFT, LMFT 6:47
And I think that's is that maternal paternal instinct? Taking over? Is that related to hormones? Maybe? I don't know, I can't speak to that, specifically. But I think it is just Well, I think we're just talking about caregiving in general, just this natural, protective, instinctive response that we have when we have children. And regardless of however, we have them, you know, whether it's biological adoptive, all the different ways that one can become a caregiver.

Scott Benner 7:20
So you see you become, I mean, obviously, listen, we're not saying anything, it's hard to understand, but babies are helpless. And they're yours, you feel a connection to them, hopefully right away, or at some point, I mean, I'm sure there are some people who never connect with their kids, I've seen it happen, it's sad. But generally speaking, for the most part, you have this, this feeling of I have to protect this thing. I have to make sure it's happy. I have to make sure it's safe I have to make sure it grows up well and has opportunities and you have all these like crazy feelings. And you could be in another situation by the way you could be in a in a depressed situation financially where your your focus is more about I have to get this kid food I have to find a way to give them clothes and shoes or whatever it ends up being. Is that is it when you perceive a failure that the guilt hits?

Erika Forsyth, MFT, LMFT 8:12
You? Well? Yes, I would say when you perceive a failure, and I think it's important to differentiate between guilt and shame here because guilt is I and Brene Brown, who I'm sure I'll mentioned more than once on this podcast, she has read a lot of books and TED talks around this topic around the difference between guilt and shame and guilt is more of a response to the behavior like I I did I did something bad in terms of you know over talking about you know, care mom dad mom guilt I did something bad I didn't do this well, I didn't spend enough time with my child i i didn't wasn't able to give them enough food I wasn't able to sign them up for all the activities I wanted to because of finances that that is a response feeling badly or wishing things were different in response to behavior. That is the guilt feeling which often can be like productive in some cases because then if you're aware you can make changes shame is when you're when you let's say you feel you are feeling you are experiencing guilt because quote, you did something bad shame is then I am bad. I am not a good enough mom. I'm not a good enough parent. I'm never I'm a terrible person. And so that I think it's just important to kind of differentiate those two things. Before we move forward. Yeah,

Scott Benner 9:43
can something an outside force? Take shame and make it into guilt for you or guilt make it into shame for you. I'm trying to I'm trying to find a I wish I was smarter in this moment. I record but I'm trying to find

Erika Forsyth, MFT, LMFT 9:58
I think well I think the easiest one would be social media or influence or even a family member, let's say your I mean that the easiest kind of example that comes to mind because I am a working mother is, you know, you don't, you don't spend enough time with your children and you're feeling guilty about that, because you're trying to find the, you know, the, quote, work life balance, which is kind of a funny thing in and of itself. But, and then and then maybe you post something about that guilt on social media, trying to either be comforted, or maybe to feel less lonely, because it can be a very isolated and very common experience, I also think we need to normalize it. Most parents can feel guilt from time to time, and that's normal. And you're not alone in that. But let's say you're feeling that guilt, and you're either talking about it with a family member, or you're posting something about on social media. And then you get either attacked or shamed like you should be staying home or why aren't you? Well, you know, why are you working so much? Or, really, you should, you should cut down on those hours. So you can be at your child's soccer games, those types of comments can definitely help you lead the shame, if you're looking for that and susceptible to that type of feedback.

Scott Benner 11:14
So you're somebody could guilt, somebody could shame you about something you feel guilt about? Yes, yes. And then you you could then transition or I guess, duplicate, you could probably split off and feel both things all of a sudden, like you already felt guilty. Now you're ashamed of it.

Erika Forsyth, MFT, LMFT 11:32
Absolutely. And then you're in a kind of this shame spiral. And the I think we can get to, you know, how to help us help yourself in that moment. But I think having that initial awareness of oh, I'm feeling guilty, this is a normal feeling as a parent, and, and then either reflecting back, okay, maybe I could find some ways to be, you know, at home or more present when I am home. And maybe it's putting your phone down by the front door, whatever it may be. But then when that you lead into shame, were like, Oh, my gosh, I'm such a bad parent. Because I was talking about this with my aunt and she made these comments. And I'm never going to be the parent that she was those those it's all kind of in that your narrative, your self talk right as to how far and how deep you can go into that shame. But it can be influenced and exaggerated by outside forces, as you say,

Scott Benner 12:31
Why Why? Why not? It's a big question. I'm about to have no answer. But might you say it a different way. In your example, you go online, you make this statement, hey, this happened. I wish I could have done better. There are a number of people who will come in and support you. Right? People say it's okay, cut yourself a break. You know what I hear people say all the time, give yourself some grace, things like that. But then there's anger, people are either supportive or angry, or the angry people just protecting themselves from feeling guilty about something that they're keeping under the surface. Like, why would you lash out at a person for saying, I need help? I don't understand that.

Erika Forsyth, MFT, LMFT 13:13
I? Well, yeah, without knowing their their own individual psyche and experience and trauma, oftentimes, kind of the, quote, bullying behavior online could be stemming from one person's own shame. And they are trying to alleviate some of that, or kind of discharge some of that odds, so to speak on to the other person. So I get to shame you, because that's the only way I know how to make myself feel better.

Scott Benner 13:43
Yeah, sometimes I see it as them protecting their own psyche, the attacker, and sometimes I see it as they believe it works for them. And they're trying to tell you, hey, look, just push through, push it down. Don't think about it, you'll be okay. I also want to say on a side note, if you ever write an article about your time with me, I think you should title it without knowing. Because it's the it's the phrase you use most when I asked you open ended questions that have no real answer. You go without knowing the details.

Erika Forsyth, MFT, LMFT 14:16
Because I never want to assume

Scott Benner 14:18
that's why I like you. Every time I hear you say that. I think Eric is the right person for for bed. So

Erika Forsyth, MFT, LMFT 14:22
funny. I am glad you pointed that out. Now I have to be extra aware of how often I use that. Oh,

Scott Benner 14:27
no, you should keep saying it. You keep saying it's how I know I've reached the line. I hear without knowing as well. Gee, Scott, why don't you ask another question that has 73 answers and just generalize the hell out of this whole thing. But, but I'm just going by what I see most I mean, I run a really huge Facebook group. And I hate to say it, but at this point, I read people's posts. And I think oh, this is that one, they actually fit into categories. I could probably make a chart of a bell 20 things that people post online about and drop most people's posts into those categories. And it happens. An example would be if someone comes on line to ask a question about getting some sort of an accessibility pass for a theme park, I can in my sleep with my eyes closed, tell you exactly how that thread is going to go. I know exactly who will. I know that some people will give you good factual information about it. Some people will come in to support you. And they seem like they're just, this is a great moment for them to feel like, Oh, I got one of those passes one time, I'm glad I'm not like I'm not a loser. You know what I mean? Like, other people need this too. There are hangry people that come in to say that you're not disabled. I'm not disabled. I have type one. I mean, I swear to you, it plays like a, it plays like a song that I've heard 1000 times. But always different people.

Erika Forsyth, MFT, LMFT 15:59
Yes. Well, you know, it's so interesting, because I, in anticipation of our chat today, I went on to your Facebook page and searched for posts that had the word guilt in it. And happily, I actually only I mean, I only did spend a few minutes looking at this, but there were so many wonderful encouraging comments, which decreases the isolation of the posters experience of guilt, encouraging, sharing their moments of you know, that Me too, I felt this way. I did not come across any, you know, shaming posts, but I imagined that they, they might be out there. So they know you're really good about regulating that. And your page

Scott Benner 16:49
was really funny, Eric, is that I put no effort into regulating my page. Oh, okay. So where it comes from is that if it should happen, I don't just block somebody, I don't kick them out. I talk to them right there in front of everyone. And I say and then you teach the group that here the expectation is, you're going to be helpful to people. Yes. And if you're going to be sharp tongued, it better be helpful. It better be purposeful. And it better not be in anger, or just because you're out there trolling the internet, trying to get into a fight with somebody. And you get this sort of, I don't know I say this about diabetes, but I'm starting to get what I expect in my Facebook group. Because there's a core somewhere of initial listeners who wanted a Facebook group, people who said, hey, I want a private place to go to talk about what we hear on the podcast. And there were enough people there that it built a community in the in the, in the likeness of the vibe of the podcast. It's very, it's really wonderful. I can't take credit for it. It just happen. But yeah, I don't. I don't know. I don't mess around like I don't. I don't know, I don't feel weird about stuff like that. I mean, this stuff in general. There's something that happened in our life around diabetes recently that is so fresh. I'm not actually going to share it on the podcast yet. But it was an it was a situation where I could have felt guilty. And something happened. I was the gatekeeper of a good or bad decision. I made a bad decision. We've probably good reasons. I'll explain it one day on the podcast. I did it just I did the wrong thing. And it led to a problem. And everything that happened after that was my fault. It just was. But I was able to step back after the initial thing happened and say to myself, I didn't get my kid diabetes. I'm not the one that made insulin work like this. I'm not the one that you know, like I none of this is me. I'm in a bad situation, doing the best I can. I'm not a perfect person. I wasn't perfect today. I did rebound quickly, and pull it back together. But I never let myself feel guilty about it. And I was not ashamed of what I did. And I don't know why I can do that. And other people get run over by these things.

Erika Forsyth, MFT, LMFT 19:26
Well, probably just as we've talked about in other episodes, you're kind of how you're wired and your self talk and your resilience. I did notice like you as you mentioned, you know you did not give you did not create diabetes you know in in Arden and there was nothing that you could or could not do to prevent her from getting it and I did notice was as I searched for, you know guilt in the in the Facebook group, that there. That was obviously the initial guilt that that a caregiver might experience is this What did I do? What did I not do? How did my child get this type of guilt? And I think then you go through a type of a period of time where you learn and you have more education around diabetes psychoeducation around kind of what what can you manage what can you not manage. And then I think where you are going also is this idea of, you know, perfection, this expectation of perfection that we are human and we are going to make mistakes, you know, we're talking about in general care, mom guilt, but then with this diabetes aspect, you know, you cannot expect perfection because then that leads to the guilt and all you know, all of the feelings around shame, and then you can also you don't want to pass that on either to your child because you're trying to model that so you have that pressure as well.

Scott Benner 21:05
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You know, I just saw somebody the other day had a an illness, probably lifelong that they were unaware of. And now it's caused a real problem for them. And what struck me about it was that for decades, they didn't know this thing was happening. So they couldn't feel guilty about it while it was happening, they couldn't feel pressure about it. But with diabetes, you immediately are made aware that less than perfect blood sugars are going to lead at some point to some sort of a deficit somewhere, like you're not, you don't I mean, like diabetes is one of those things that most of us are not getting out of unscathed. Somehow. And on top of that, you might be one of the lucky ones who have multiple autoimmune issues. You know, and I think when people are first diagnosed, there's this feeling that if I just do this perfectly, yes, it's going to be a pain, and we're gonna have to do insulin, and we're gonna have to be careful and etc. But the outcome for my kid or for me, is going to be exactly the same as if I never had diabetes. And I just don't think that that's a realistic goal. I think you can, I think you can and will mitigate things. And I think that it's very possible for especially with today's technology for people to live, pretty free of complications, but it's going to happen to somebody. And it's not your fault. Do you really mean like, not everybody's prepared to do this thing the same way. But everybody gets the guilt, it doesn't matter how well they're doing. I swear to you, Erica, most of the emails I get are from people with six A onesies who are killing themselves. It's not a five, four. It's never from somebody who has a nine that wants a six.

Erika Forsyth, MFT, LMFT 26:46
Right, right. Right. So and So what Yeah, then what is their expectation, the amount of pressure they're putting on themselves? Is that realistic? are they experiencing lack of sleep stress? How are their you know, how are their general? What's the general functioning? And maybe they can do all that, and they're succeeding in life. But that just feels like a lot of hard work? And

Scott Benner 27:11
is it really? I mean, isn't it obvious that when you put so much effort into one thing, there's not enough time or bandwidth to put that effort into other places?

Erika Forsyth, MFT, LMFT 27:22
Yes, yeah. Yes. I mean, I think what and I think they're also just to be mindful of, you know, the seasons of living with type one. They're there, I think, the way you respond and feel like you need to do all the things that you should and could be doing to control it as as the caregiver for your child. It I think it ebbs and flows. And so I think just being mindful of that to the post diagnosis, you know, trauma, and then there's the transitions and your child going through puberty and then off to high school off to college. I think there are different seasons to where maybe as a caregiver, you experience higher levels of guilt and pressure, as each new kind of a new chapter unfolds with the with the care.

Scott Benner 28:13
So how do how do you? Is there a way to give the guilt away? Can you get rid of it? Or some people just? Well, you know what, I'm going to ask a different question. And then I'll ask about getting rid of the guilt. Do some people late lean into it? Is that like a martyr complex? Are those things not connected?

Erika Forsyth, MFT, LMFT 28:39
i That's a good question. I feel like if you're leaning into the guilt, I think there's there's a healthy level right to responding to that guilt. Because if you are doing something, quote, bad or wrong, or you're making a mistake, and you're feeling that, that gut feeling of guilt, I think it's a healthy response to be aware of that and check it and say, Okay, well, maybe we could have corrected this way, this time. And I'm going to do that and then I'm going to move forward and not kind of sit and swim in that guilt. Because then then you're then you're flirting with all the shame. I think if you're if you're leaning into it over and over, I would I would be curious as to what what are you getting out of that type of behavior? What's the function? Are you getting? Are you getting the love that you're feeling like you want or attention from family members? Are you posting frequently about your guilt on social media? And you're needing that connection? I think that's all really normal now and again, but I think just having that awareness piece of why are you leaning into that? What are you getting out of that and how and Is that healthy?

Scott Benner 29:59
Could it Be could it be learned or generational? What do I mean? I'll use myself. Yes, you can, right? Because like, like, for instance, uh, you know, I grew up in a blue collar household expectations where you'd have a blue collar job. I never once thought I wouldn't. I never once thought I wouldn't. I ended up working in a sheetmetal shop, I did a laborer shop like my father did. My mom was a cashier, you know what I mean? In a place, she didn't have a very high level position. I was doing what I was expected to do. And not that there's anything wrong with other shops. And I really don't mean that, but I didn't fit there. But yet, that's right where I went, I got what I expected. And it wasn't until it wasn't until the I mean, maybe it was guilt. Maybe I felt badly for doing something I knew I shouldn't be doing, I don't know. But I realized one day I was like, I have to go, I think there's more for me, or something different, even not even more like I just don't think I fit here. And I'm gonna go find out where I fit. And I was able to get to that. But there are plenty of other people who get put into situations over and over again, generationally, you see generational wealth, discrepancies, health discrepancies, right? People just get caught in a loop. And if you grew up with a mom who guilted you and she grew up with a mom that guilted you, is there any way that you're not going to guilt yourself when something like this happens?

Erika Forsyth, MFT, LMFT 31:32
But yes, there is a way I think the pattern is certainly can be learned and you're it's being modeled for you. And that's how you see if you're seeing your parent respond to that kind of psychological discomfort. And she's, and you know, he or she is verbalizing out loud how, how bad she is, and she's never going to do be good enough. You were that is probably, you might replicate that type of behavior when you feel like you've done something wrong. And of course, that can be corrected by pride that I no go back to the first step is just having that awareness like oh my gosh, this is this is what I do when I feel like I do something wrong. I feel badly. And then I shamed myself. And I want to stop that. And so the self awareness piece is huge. And being open to that if people are reflecting that to you. Yeah,

Scott Benner 32:29
you know, your point about the modeling things, I have two younger brothers, one is five years younger than me, one is 10 years younger than me, the one who's five years younger, has a job that's more blue collar and labor like, and that's the kind of job I had when he went out into the world as an adult. And I was basically a father figure. By the time my youngest brother went out into the world, I had a more white collar job, and he has a more white collar job. And I wonder, excuse me, I bang to the microphone, which is not something I normally do. I, I sometimes wonder if it wasn't that idea, like, oh, I there's here are the other options that exist, I'll go follow one of those. Sometimes just knowing that it's possible, which is why I like doing an episode like this, I like people being able to hear that, it's actually possible for you not to feel this way. And for you not to, you know, keep the cycle going. You know, it's a kind of like a trite thing to say at this point. And it's been overused and overused, but you can be the one who stops it. And I think if you're the parent of someone with type one, or you know, somebody with another issue, there could possibly be no more important time to stop it. Because you were just guilted and your pancreas worked. You know what I mean? Like your kid, if you pass this on to your kid, there gonna be other issues, and they're going to be they're going to be a lot more serious than just how you feel in your head, I think.

Erika Forsyth, MFT, LMFT 33:54
And yes, and I think, you know, as a caregiver of a child with type one, I think, to expect that it will happen, you will make mistakes, and you will probably feel guilty about it. And that's okay, too, that it's not this abnormal, wrong response. And so when you are experiencing that to say, oh, okay, this is normal, I'm not alone. And I'm going to I'm going to learn and I'm going to kind of course correct or gather more data, to figure out how to do whatever it is do do it differently next time. And then and then the thoughts and there. And I think being aware also if you're susceptible to the outside influences, maybe it's not appropriate to go post about that. Or to unless unless you feel like you're it's a safer, smaller Are you are you were, you know that it's going to be a safer response. I think just being aware of who are you going to go tell and talk to about that feeling of guilt Being aware of that. Yeah, if you're susceptible to the influences, yeah.

Scott Benner 35:03
Okay, I want to before we move on, I just want to be clear that the episode is going to be called mom guilt, because I think it's what people think of. But I don't believe it's gender specific. I think dads feel just as guilty that if you grew up with your grandmother, and she was your custodian, she feels just as guilty. You know, he she, I don't think you should I don't think it matters, honestly.

Erika Forsyth, MFT, LMFT 35:24
Yeah. And I yeah, I think as we mentioned, the beginning, it doesn't matter. We all as human beings experience it, I probably use she because I'm a she, I go.

Scott Benner 35:33
So no, I refer to that yet. I just want to make because I, you know, I'm thinking about it, as we're getting ready to move into kind of the second half of the recording. And I'm, and I'm just thinking, I want to I want to be really clear, I think there I have, you know, there are things that I feel guilty about. I process it differently, though. And I get, I don't know, if I, if I'm, if I'm actually giving it away, and just getting rid of it out into the ether. Or if I hide it differently, or if it comes out differently, like I have no idea. I think the most fascinating thing about us is we really don't know why we're doing what we're doing. Like everybody feels like. And I think that's why it's weird to talk about fixing these things or making them better. Because all these things happen. So kind of invisibly, and then suddenly, something in your life triggers you into thinking, wow, I have to not do this. And then now all of a sudden, you're trying to consciously stop a thing that kind of subconsciously happened. And those seem like two worlds that don't overlap for some reason to me.

Erika Forsyth, MFT, LMFT 36:38
Right. And yeah, it is such an internal process that happens so quickly. I think before you know, it you could be in it is living and breathing shame, which could then it can affect your overall mental health. If left unchecked, it can, you know, prevent you from connecting with your children or other family members or friends. And so I think that's I appreciate you know that we're focusing on this too, because it is it's just so common and so normal.

Scott Benner 37:14
I think I think too, you can see people sometimes in in an attempt to get rid of their guilt or shame, they just go the opposite way too far to like apathy. And they just decide they don't care about anything. And the way that I won't feel badly about is if I don't care about it. Yes. And that's just probably more dangerous, because you've said a number of times guilts actually kind of valuable. It really is. I don't even know if listen. They're I don't even know if there's not a function for shame, sometimes. You know what I'm saying? Like they're like, I mean, if you're deep enough in a hole, I don't know how you get out of it. Like, do you sometimes need someone to look at you and go, Hey, you know, pull it together? Like, you know, like, I don't know, I have no idea. Maybe it works. For some people. It doesn't work for other people. You know, you hear people say that they feel shamed about their bodies, but then other people will tell you, I was in poor health until a friend of mine came along and pushed me in a way that I don't think society would have been comfortable with. But here I am. And I'm better. So I don't I don't know what the hell the answer is. I have no idea. I just think that if you're hearing this, and you felt this guilt, especially around diabetes, it's just very important to, I would think to say out loud or write down on a piece of paper or share with a friend, that this is not my fault. I didn't do this. I didn't make diabetes. It's not my fault. My kid has it. Just because I have I don't know, a thyroid problem doesn't mean I gave it to my kids. That's genetics. You know what I mean? Like, never once I've never once heard somebody say, Oh, it's my fault. They have blonde hair. Yeah. But your kid gets diabetes. And all of a sudden, oh, my mom, my grandmother has celiac. This is my fault. You know, that's just silly. So, it but it's how people feel?

Erika Forsyth, MFT, LMFT 39:06
Well, yeah, because I think going back to our, you know, your instinctive, protective feelings. We as a parent, you feel like you, you should do all the things that you can do to protect your child from experiencing pain. And with chronic illness, diagnosis, you, you feel like what did I not do to protect them? How did I prove how can I prevent this and then, and then maybe you realize, you go through the process of acceptance, like okay, I've, I accept that I was not able to, I didn't control this diagnosis. And then maybe if you're kind of if you lean towards those thoughts and feelings, okay, well, now I need to do everything I can to prevent them from having any complications. And you're driven by that fear, which then drives all of your actions and responses. So

Scott Benner 39:59
um, So if you have a kid, and the kid can't hit a baseball, you don't feel guilty that they can't, the kid can't hit a baseball, you take them out via tea, you try and teach them how to swing, it all feels like it's accomplishable. Maybe with diabetes, the guilt comes because you know, at the end of this path, you you're not going to find a magic wand, it gets rid of diabetes, I wonder, I wonder if guilt doesn't push the philanthropy around diabetes, even like that feeling of like, I can't cure this, let me try to help the bigger picture. Because that's, it's really interesting. Everything that comes up in your life, if you're reasonably healthy, you I think you will believe you can overcome it, or that there may be a path out of it. And that, you know, not giving up might be the answer. But yeah, but there's nothing about a disease that gives you that feeling.

Erika Forsyth, MFT, LMFT 40:51
Well, and I think the interesting, like, does guilt drive the philanthropy I'm gonna do all that I can to protect my child, I would say yes, and with that is the fear, right, like the fear of wanting to protect your child even further from further pain. And I think what you were saying earlier, you know, the odds are good that your child is going to be okay, if you're doing all the things as best to your ability, you know. And the fear can be driving those, the guilt as well, a lot along with, you know, this, I'm gonna do, I'm gonna do the all I can, as best I can. And then also, to prevent the guilt, I'm going to practice some self compassion. And be kind to myself, when I when I, we, you know, we were too we over bolused or corrected too strongly. And we're going to learn from that.

Scott Benner 41:48
I wonder if there are times when I wonder if my ability to let it go? If that's not actually I don't know what the word would be, like some sort of a defense mechanism, or if it's not, like an overabundance of self confidence that maybe I don't even deserve, you know, or whatever. Like, like that idea of like, I couldn't have done anything about this. It's not my fault. And that and that, you know, because you can look at that a different way, like I do, listen, I do believe that I examined that situation, a number of them before and I said, Okay, this is what happened, happened here, here, here. Here's my mistake, you know, okay, then this happened. And then here's where I pulled my back together again, and I got back on course, and then it's how we fix this. So as much as I might have been, and the fault, I'm using quotes around fault. It's just that there were too many variables. And, and I was distracted, on top of them, right. And so I just didn't, there were just I got, I'll be able to talk about it at some point. But there was, there were too many things going on, it got beyond my ability. And I did not know that was happening. And as soon as it became a dire focused situation again, and I was able to shut out surrounding, you know, variables, I was back to the person I needed to be in that situation, and bla bla bomb, we're good. So but isn't that life, though? Yes, you know, you know, things are happening constantly. And how do you give your full attention to something? And? And isn't it easy for? I don't know, like, I mean, there's, there's such a randomness?

Erika Forsyth, MFT, LMFT 43:35
Well, I think also, like, perhaps you get comfortable in, in the management. And well, I'm, I'm not a caregiver to a child with type one, I am a parent. And I think just aside from the caregiver guilt, with diabetes, mere making maybe making decisions, and you're kind of going through the motions of the evening, and then oops, you let your child do something that you didn't, wouldn't normally have them do. And then you feel like, Oh, I really shouldn't have done that. Or I should have said that. And then you kind of check yourself and say, Okay, I was not focused or as you said, there are all these other kind of variables and you retired, maybe you're planning something, and I get like the caregiver fear or the guilt around while we I Bolus too much and now my child is low. And I'm fearful that or they can have a seizure in a result of something that I did, I gave them X amount of units. I mean, that is that is real fear. And I get that it can be real guilt. And just in those moments to just try, you know, as as you're being aware of like, Oh, yes, I do feel that, that guilt. And I've seen y'all post about it too. And then and then the next step is, gosh, I made a mistake. And that was really scary, my child's Okay, thankfully. And I'm going to move forward and I'm going to be kind to myself into that I get to practice, I get to model that for my child to to say, Wow, we made it, you know, we over bolused. And then we made a mistake. And that was scary. Like we're okay,

Scott Benner 45:19
I hate to say life is like the the spinning plates trick and anesthesia, like you put a stick up, you get a plate spinning on it. And then they run over and they grab another stick and they stand up and they get another plate spinning and they get as many spinning plates as they can. And they basically are running back and forth from plate to plate keeping them spinning so they don't fall off. I almost think of that as like autopilot. Sometimes you were talking about like, even with regular parenting, like sometimes just the something's going well. And so you take your attention away from it. But you know, one day, right, like the plate, you're not going to make it back to that plate. And then it's going to crash down, you're gonna have to start over again, we used to have this joke we told about my youngest brother used to say Rob is either in trouble or getting in trouble and you haven't found out about it yet. Yeah, two states of trouble. It was happening currently, or, or he was putting it into motion. And that's just sort of, you've got all those plates spinning. And while you're spinning the one, it's hard not to stand there and think the third plate from the right needs attention. And the end, and I can't do all of this. And I do think that being being a good parent is going to constantly put you in that feeling. Right? And so the real truth is, I think you have to be able to stand there and reconcile with yourself. One of these plates is going to fall. My job isn't to keep them all spinning. My job is to keep as many of them as possible from falling. And maybe we'll get lucky and the ones that crashed down aren't the real expensive ones. And yeah, right. But but there's no I don't know, I think that there's comfort in knowing that there's no perfection. Yes, that's all I mean, that yes, comforted by.

Erika Forsyth, MFT, LMFT 47:15
Yeah, there's Yeah, you cannot expect perfection in yourself as a parent as a person living with type one that obviously then leads to all that, you know, the distress and the shame. And I think just it happens even, you know, myself with type one, I'll be trying to juggle multiple things, and I'll mindlessly Bolus and realize, Oh, my goodness, or I Bolus twice sometimes, because I have forgotten and there's so many things going on to say Oh, well, now I get I'm gonna correct for that. And I'm not going to do I'm going to be more mindful next time. You know, it happens,

Scott Benner 47:54
you know, people do that thing where they, you know, they're MDI, at the end of the night, it's time for them to give themselves 1015 20 units of, of Basal insulin and they just grabbed their fast acting insulin instead and put it in, I see a post about that monthly.

Erika Forsyth, MFT, LMFT 48:12
You know, I will I hopefully he's okay. My brother, who also has type one, he he was at home with his children, while his his wife was away for the weekend. And he was, you know, he's a he's a very hands on dad, but I think this contributed he was managing all the bedtime routine. He gave himself his he wears a Dexcom but does MDI. And he gave himself as, you know, whatever, 10 units of Lantus and then did it again an hour later that forgot 10 Because he just you know, juggling and then he was you know, poor thing was up eating all night long. But it happened it happens and, and then you get to you probably feel badly and you see, but I made a mistake, and I'm gonna I'm gonna practice being more a little bit more mindful next time and that's okay.

Scott Benner 49:00
I think my point about all this is, is just that. Most days it's gonna be Oh, hold on none of this is gonna matter if I die while making the pot.

Erika Forsyth, MFT, LMFT 49:13
You're gonna make it Oh, am I gonna

Scott Benner 49:17
make I ran out a hot home I was I drank. I think my point is that

whether it's life or diabetes, or anything in between, it's all not going to go right. And you doing emotional damage to yourself when you don't need to. Because something that was never going to be perfect anyway isn't perfect. You really are doing yourself and your family and the people around you a disservice. Now you might not be doing it on purpose, but you can you can recognize it on purpose, and try to help yourself on purpose. I'm not saying you're ever going to get rid of it completely. But big stuff, right? Like chopping it. It's almost like diabetes, like chopping out the lows and the highs, and trying to find less variability, whether it's in your mental health, your day to day life, or type one diabetes, that's really what's most important. You're not trying to live with a blood sugar of 85 Forever, your blood sugar may get low, it may get high, the key is to recognize it before it gets out of whack, and bring it back again. So if you've listened to the podcast, that's how I talk about diabetes. And if you're really paying attention to the podcast, you know that I talked about diabetes, the way I think about being alive. And so, I mean, I'm not the end all be all on anything, but I think you just shave off the highs, shave off the lows, try to stay in the middle as much as you can. And that's well done. You know,

Erika Forsyth, MFT, LMFT 50:49
yes, and no, and then, you know, learning how to course correct, I think, you know, when you think about it in the mental health perspective, the the term means being mentally having mental health fitness, that doesn't mean that you're going to be happy all the time. It means or having a straight line all the time. It means it means okay, you recognize when you're feeling low, or when that you know, the feelings are kind of becoming consuming. And then knowing how to course correct does it mean, going out, talking to a friend exercising, reaching out for help from a mental health professional practice doing some yoga and mindfulness accepting those challenging thoughts? It's, you know, understanding how to get back to, as you say, you know, in the middle of less highs, less lows, I think the same thing can be applied to being you know, having that mental health fitness, and it takes practice.

Scott Benner 51:43
Yeah, really does it? I really, I shudder to think that I was gonna say it's about the journey, not the destination, but but it really is it? I mean, and it my kid asked me the other day, like, what's the key to life? Like, what's the most important things in life? And I answered differently than I would have answered 10 years ago, and maybe differently than I would have answered 20 years before that. And I just said, it's health. It's, it's achieving the best level of health that you can. I was like, everything else is secondary. People who are healthy and don't have, well, we're all dying, right? But people who don't, people who don't have day to day knowledge of the deterioration of their body, those people have, I mean, I pay for that. You know what I mean? Like, I'm not even saying that they're just, they're super healthy, and I'm not, or my daughter's not, or etc, I'm just saying that they are not aware of their mortality constantly. And I, that's a gift, I would love to give somebody, you know, like, because it's all going to end reasonably the same for everybody. But knowing it's happening as it's happening, sucks. And then that makes every decision, every mistake, just feel so much bigger. Because you know, you know the outcome suddenly, right, like you have you have, you have cause and effect that's been laid out in front of you by a doctor, by your experiences. And if I do this, if I don't use enough insulin, my blood sugar is gonna get high and my body is gonna deteriorate quickly. If I use too much insulin, my blood sugar, just gonna get low, I might have a seizure, I might die. You know, when a person has a beer at a bar, they don't think about their liver. You don't even think like right when you smoke a cigarette at a club, but you're not really a smoker, you don't think oh, I probably just lost three minutes of my life. You know, it's you don't have to have those thoughts and therefore you don't get the guilt from it. I don't know I could be you know, Erica, these conversations are basically about me being wrong. And you taught me

Erika Forsyth, MFT, LMFT 53:50
I'm still just impressed that one of your children asked, you know, what's what's the key to life?

Scott Benner 53:56
Well, I think he thought it was money, by the way. But he just fresh from college a couple days graduation, and he's sitting around trying to figure out what to do next. Yes, you know, and he's like, Well, what's the most important thing what's the thing I should be focused on? And he said, like, it's money and I was like, That's not that's health. It's health and security and the access to clean good food. Like like it's that's what it's about. It's about love and, and connections. And you know, caring about somebody more than you care about yourself. Like I think that's what's that's what I think life's about.

Erika Forsyth, MFT, LMFT 54:33
Yes. And and being kind to yourself in the process as you navigate all of that. Yeah,

Scott Benner 54:39
right. Right. Not doing the martyr thing, which which came up earlier, and we never really talked about it but happens constantly. I sit listen, I hate to say I see people online constantly doing that. It just like everything's going wrong, but I'm trying so hard. This would all fall apart without me. Like that whole thing you guys. Like that's, I don't know, I'm sure That's a completely different topic. But it's common. I see it done commonly.

Erika Forsyth, MFT, LMFT 55:06
Yeah, well, I think yeah, that is kind of going into is that a component, a part of, you know, the diabetes distress feeling powerless in the process of the management, whether you're the caregiver or the person with type one is that? Are you? Are you getting a lot of attention? As a result of that? And is that meeting an unmet need that you're getting elsewhere? I think there are probably many different ways is, you know, is it learned is that you're not aware, there's no self awareness of how often you're feeling that guilt and posting or talking about, it

Scott Benner 55:45
looks like a coping mechanism. To me, it looks like somebody saying, I can't affect the outcome. And knowing that is making me crazy. So I'm going to pretend that we're doing everything right. So it's almost like it's like, one of those people that they played music on the deck of the Titanic while it was sinking. Like that's, that's what it feels like, to me. It's like, Alright, look, this boat is going to sink. I don't want to think about it to my assets, the water. So I'm going to project this confidence. And I find it I'm going to be honest with you, I see people do it in the in the in the space. I don't think it's I think it's not just not valuable, I think it's detrimental? You know, I would for me, I'd rather I'd rather face something head on, do my best to defeat it. If it kills me kills me. But I'm not going to shut my eyes and hope it doesn't get me you know what I mean?

Erika Forsyth, MFT, LMFT 56:40
Yeah, so it is, as you say, is it a coping mechanism in terms of trying to avoid? Is it avoiding kind of the fear? Or is it avoiding the truth of whatever other emotion and so it just feels easy? Or over time to kind of put your hands in the air, defeatist, powerless? Those are all, you know, that cannot be associated with just having type one or diabetes. Two. So I think it's tricky to, to specifically categorize it, but it probably all those things.

Scott Benner 57:17
Oh, I think in some way or another, we've mentioned pretty much every reaction to diabetes that I've seen other people have, yes, yeah, it's either the I can do it. Or let's pretend it's gonna be okay. Or this is a show and I give up and let's like, was, like the whole thing on fire and see how long I'll tell you what, you know, going back 20 years, and you know, this, you've had diabetes for three decades or more? Yes, before all this technology, and the good insulin and the glucose monitors. This was basically live fast, die young, leave a good looking corpse, like a lot of people took that perspective with diabetes.

Erika Forsyth, MFT, LMFT 57:56
Yeah, it was, you know, two or three injections a day, if that prick your fingers three to four times and hope for the best. So that was 32 will be 32 years this summer.

Scott Benner 58:07
But but there are people who listen, I've interviewed a number of them, they were just like, I knew this wasn't going to be I was going to be dead. That's what I thought. So I live like that. And there were no real tools to do anything with them, they somehow lived long enough for the tools to get better. And then it slowed their progression down. And now they live with a lot of complications. I think that this right here, in this time period might be the last generation of type ones who started in a different management time and ended in a more advanced one. Like I think, yes, you know what I mean, going forward, everyone's going to start hopefully, you know, I don't want to curse but insurance and, you know, having access aside, people who have access should not experience those outcomes with as much frequency.

Erika Forsyth, MFT, LMFT 59:04
Yes, and I recently just saw some stats on that I'm not going to repeat them, because I don't want to say it incorrectly, but the percentage of complications from people who were diagnosed, I think it was 30 to 40 years ago, versus like, in the last 10 years, the percentage has, it has decreased. So significantly, it was very encouraging to see and so maybe I'll find a stat so next time, I can report that because it was it was pretty amazing. And I think as a lot of people do say, Well, you never want to be diagnosed with diabetes. You know, now is a good time this, you know, age and era of, of technology and community. Really, those are two significant factors

Scott Benner 59:50
for physical and mental health. Yeah, exactly. I can't I can't tell you how much I believe in it and the community side of it, and it's the truth be told like it's It's not something that I even thought about in the beginning.

Erika Forsyth, MFT, LMFT 1:00:04
Like I just did the community aspect of this

Scott Benner 1:00:07
assay for people with it. Yes, even even you've heard me say before, like, I thought of the podcast is like a management podcast. And a great many people that listen to it. Think of it as a community.

Erika Forsyth, MFT, LMFT 1:00:17
Oh, yeah, I mean that the Facebook page is definitely evidence of that. Yeah. I want to say pretty incredible.

Scott Benner 1:00:25
Well, yeah, I agree. I think it is, it's, it's the right place I, you know, bright thing at the right time really worked out. So listen, if I was gonna be like a coach at the end, and y'all rah, rah, rah, and like, go get on boys and everything like that. What I will tell you is whether you're being shamed by somebody, or you're feeling guilt, it's taking up your time, it's taking up your compute cycles, it's probably making you feel terrible. Turn it into action. Like don't waste that time on something that's got no end if you can help it. And if you can't help it, go find somebody that can help you. Like you might need mental health tools. Maybe you don't have that, like maybe you get from the podcast, you know, bolusing tools, and that, but what we were just talking about, about the possibility of being healthy for a lifetime with diabetes, like focus on that, like, if you want to make yourself crazy about something, make yourself crazy about that. Not about what was me this this all over? Here we go like you don't you mean? Like, it's just, this isn't what I wanted. It's not what I expected. Like, you got to get past that part. Like something else was gonna happen. Like, life's never what you expect? I mean, okay, is your life the way you expect it was gonna be?

Erika Forsyth, MFT, LMFT 1:01:37
No, it's not I know, you, I know you've said before, to like, you don't have a child expect. expecting that they're going to be diagnosed with something or have a major challenge, you know, you give birth to a child and hope that everything will be perfect,

Scott Benner 1:01:50
giving birth to the centerfielder for the Yankees, like, right, like it's gonna dance on, you know, everybody's gonna be brilliant. And every you know, so it didn't work out quite like that. No reason to give up, you're still here. You're still here. This is your shot. You don't even like, let's say, I don't know, I swear there's

Erika Forsyth, MFT, LMFT 1:02:10
a season for any for all of it. And to kind of understand that, that's, there are seasons and I hear you say, like, try and push through that and move forward and get the help that you need. That whatever, you're feeling stuck when you're feeling stuck in that whatever it

Scott Benner 1:02:24
is, because that that stuck feeling that like, I mean, it's just, it's, it's the devil, right? Like, I mean, you get into this place where you're just like, it's comfortable. You see it with eating, sometimes, like, people start off, you know, get into a poor eating cycle. And then they just, they lean into it, it's comfortable, right? The carbs get a hold of you're like, Oh, sugar, fat, I love this. Like, and you just, you're like, Oh, I'm gaining weight, I don't feel as well, whatever, you can't eat it say, you almost can't even make yourself care. It's It's It's, It's intoxicating.

Erika Forsyth, MFT, LMFT 1:02:59
Yeah, shame, shame, as it can be really cruel and nasty like that. Yeah. So is there when you're attuned to it.

Scott Benner 1:03:07
So if someone comes to you and and exhibits these, either shame or guilt around diabetes, where do you lead them first, like give them an idea of what would happen if they reached out to a mental health professional?

Erika Forsyth, MFT, LMFT 1:03:23
I will, I first would applaud them and commend them for reaching out because it's often the hardest thing to do. Because you've, you've recognized that you need help, and it can be scary to take that first step. So we would, I would, you know, commend them on that taking that first bold step. And then we would spend time practicing that self awareness around how frequently are you feeling those those thoughts of real have probably shame at that point? What are the triggers? Are there are they is it around a specific issue? Is it global shame, you're not a good enough parent, you're not a good enough coworker, not a good enough spouse, you know, sometimes it is can be specific. In all of the roles that you play in life, it could also be global. So we'd spend some time kind of recognizing that. And then maybe moving into some mindful ness of accepting that there will be moments kind of all the things that we've talked about. There will be moments where I feel guilty and not placing judgment around that acknowledging it, accepting some of those thoughts and feelings, and then moving into more healing and kind of corrective work around the changing your thoughts and getting the support that you need. I think because shame does lead to isolation and it likes to keep you there. And so by stepping out getting help with a mental health professional stepping out into being more open about it with your family and friends, and and just feeling less isolated. And that is one of the best tools as well, that you're not alone in the in that space,

Scott Benner 1:05:08
I would think that it's probably important to recognize that, you know, guilt and shame are not, they're not things that they're not things that you get when something goes wrong, everybody has them. You don't even like to sit here and think, Oh, I do feel very guilty, or you know about my kid getting diabetes, or I am ashamed of how I manage their blood sugar, that kind of thing. If you think you feel that and other people don't. That's not the case. I would think that. I mean, I'm guessing here, but I don't think you could find one in 1000 people who don't feel guilt or shame. And so it's not about trying to avoid it. It's about living with it. Like you even said before, like you can use the guilt, the guilt can be a motivator. And how much of it is even shame. Like how much of it is the way you take it in? Versus how it comes at you. Is that is that controllable?

Erika Forsyth, MFT, LMFT 1:06:05
And the way you how much candy the way you take it in versus how what was the second part?

Scott Benner 1:06:10
Like? The way you take it in versus how you? I don't know, like how you respond to it. I guess like, like, if somebody's trying to make me feel ashamed about something. They couldn't do that. I wouldn't allow it.

Erika Forsyth, MFT, LMFT 1:06:25
Right. Because you're you're you have the built in self talk. Right? And whether by nature and nurture you you do. Yeah. And if

Scott Benner 1:06:33
I if I if I if I should feel ashamed about something? I'm already aware of it.

Erika Forsyth, MFT, LMFT 1:06:41
You've already led yourself there, don't worry.

Scott Benner 1:06:45
And so yeah, Scott's got it all covered. I know what I've done wrong. Okay. So it's like, you can't you can't do that to me. I've already and I think that's a preemptive way of handling your mental health, which is you can't ignore things. You just sort of have to look at them, assess them, be honest with yourself and say, All right, well, we're all still alive. I gotta keep going. You know what I mean? Like now if I, you know, if I stand up and do something heinous right now, maybe I can't get past that. But I don't I live my life very simply. I'm gonna tell you something. When my kids asked me what the key to life is, when they were younger, I said, I said, Well, here's what I do. I don't lie unless I have to. And I treat people the way I want to be treated as often as I can. And I don't feel bad about anything that doesn't follow those two rules I'm doing, I'm doing my best. I have good intentions every day. And so if something doesn't go right, or my intentions can't cover everyone, well, then that's what it is. I'm not gonna sit back here and feel badly about it. And if somebody doesn't, you know, to be more specific, if there are people listening this podcast who don't like it, and some of them are happy to tell me. And I read their reviews. And I think, well, it's not for them. I never once think I should stop doing this, you know, and it I see who it helps, it helps more people than it doesn't help. It's a valuable thing. I wouldn't spend five seconds worrying about the alternative.

Erika Forsyth, MFT, LMFT 1:08:19
Well, and that is a result also boundaries, right of having healthy boundaries around your mindset.

Scott Benner 1:08:28
Yeah, well, listen, I don't want to be, you know, like, you know, but let me just say this. Think of all the people you know, how many of them do you trust? So what are you gonna start worrying about people you don't know, for coming and saying things to you, I saw something in the Facebook group recently. That was, was, you know, it happens once in a while, like someone, I'm gonna give a very like, generalized. Like, someone comes out and describes, this is a cat. And then someone says, Yes, that is a cat. And they go, I can't believe you said that to me. Don't come on and tell me that, you know, my family treats me like this. And when on somebody else's value where your family is terrible, don't go you can't speak about my family like that was like, well, you came here, you described a terrible situation. And now I'm agreeing with you, and trying to support you. And suddenly, you don't want me to tell you the cat's a cat. Like, well, then I don't know what to do here. And I never feel that way. Like I just feel like, Just be honest. And take honest responses from people do take the ones you want. Like, I'm not going to tell you that there haven't been some reviews that I've read. And I thought that person's right. You know, I mean, if you if you don't go back and listen to eight years of this podcast and see that in 2022 that the split of me speaking to the guests speaking is more 5050 than it was in the beginning. Well, you're not you know, I've learned so I mean, somebody said that to me. Two years ago, like you didn't you talk too much? And at first I was like, Alright, fair enough? You know, I'll see what I can do about it. So

Erika Forsyth, MFT, LMFT 1:10:07
yeah, beat your open. Like, again, that's the boundaries like of knowing when when is it appropriate to let something in? And when is it not? Yeah. And I think that the Facebook posts you just described, that maybe that feels like, I think just going back to the awareness of, if you are feeling a certain emotion, I know, we're talking specifically about guilt here. But if you're posting something, and you're responding differently, then maybe you're that person was looking for something different, right? And a need was not met in that other person's response. But just going back to that awareness of cash, I'm posting so much about this guilt, and it's not changing. I think that really is the, you know, the first step in trying to help yourself, but also normalizing and validating for yourself that it's going to happen, right?

Scott Benner 1:10:58
I want to say to that, you know, as we use examples from like a Facebook group, that people could be like, Oh, that's online, it's, trust me, I've been looking at it for years, it is a reflection of how people feel, it's actually an honest reflection of how they feel because they feel anonymous to some degree. And so this is their one chance to get this. This unburden themselves. Sometimes. It's, you know, forget it being a Facebook post. It's it's a person's thought. And then it's how they respond to other people around them. I don't know, I My point was that people don't have real control over how you feel if you don't let them. And I don't know the secret to that. I just know it's true. Like there, there are probably I was talking to somebody recently, and you probably have to go. But I was talking to somebody recently, who runs another Facebook group. And they said, I don't like it when people speak poorly about my Facebook group. And I was like, Why do you care? And I said, Aren't you you're helping all these people, right? And I said, Yeah, I said, Well, somebody doesn't like the way you do it. Like, who cares? And I said, don't you think that there are other people in the world who don't agree with you? And I said, you're just not aware of them. But they don't. It's the same. It's just like when my kids asked me about, like, when cyber bullying first happened, like you don't think of it but as technology changes, you know, things happen in the zeitgeist that become more real cyber bullying is one of those things. I told my kids I was like, don't look, it doesn't exist. And I'm like, what I was like, there could be someone in the backyard right now. Telling, I don't know the birds. What an owl I am. I don't hear him, it ain't happen. And, and I said, Now, if it becomes real in your life, you know what I mean? Like, that's obviously a different story. But the idea that everyone's gonna like you, or agree with you. I don't even know why people would expect that. Like, Have I ever told you how when I first met my wife, she said, Do you know some people really don't like you?

Erika Forsyth, MFT, LMFT 1:12:58
I don't know if you shared that with me. She goes, she goes,

Scott Benner 1:13:01
some people love you. And some people really don't like you. And I said, Yeah, I know. And she used the person as an example. And it was a person that I generally don't have a lot of respect for. To begin with. I didn't know they didn't like me. But they're a person like I would not model myself after. And my answer to her was, what would it say about me? If he did like me? I'm glad he doesn't like me. I mean, looking at who he is, that's not the kind of person I would want to agree with who I am. And I don't know, I just felt like that since I was young.

Erika Forsyth, MFT, LMFT 1:13:33
You know, anyway, so that's, that's yeah, that's those are your boundaries and kind of protective measures?

Scott Benner 1:13:39
I don't. I don't test them any more or less than someone else does. Which makes me feel like anyone could put themselves in that position. I just don't know how to tell them to do it. I don't know.

Erika Forsyth, MFT, LMFT 1:13:53
About Yes. And you but I think over. I mean, I know we could keep going but I think it's just over your lifetime, too. You've learned how to protect yourself in those ways. Just based on the anecdotes I've heard over. Times together. Yeah.

Scott Benner 1:14:08
Hands up. bariga bob and weave you don't I mean? Yeah. Where the swings are coming from and just get out. I don't know. Anyway, I wish everybody a ton of luck. This is an incredibly serious thing. I guilt is horrible. Shame feels horrible. I hope you can find a way not to, to to to get sucked into that vortex and I don't know.

Erika Forsyth, MFT, LMFT 1:14:33
Good luck. Yeah, you're not alone. And reach reach out. Write help. Go Go

Scott Benner 1:14:38
wherever you can. Erica. only works in California because laws. But, but she can help you virtually Erica Forsyth. Right. Yes, that's right. Yeah. If you're a California resident, or there have to be somebody, somebody in your local area must have went to college and paid attention enough to help you go find that person.

Erika Forsyth, MFT, LMFT 1:15:02
Thank you

Scott Benner 1:15:12
a huge thank you to one of today's sponsors, GE voc glucagon, find out more about Chivo Capo pen at G voc glucagon.com. Ford slash juicebox. you spell that GVOKEGL You see ag o n.com forward slash juicebox. To get started today with us med go to us med.com forward slash juice box or call 888721151 for your diabetes supplies. Well that can be an easy thing doesn't have to be a pain. Try us med often your blood glucose meter just gets given to you by a doctor but you have a choice and you can get a great one at contour next one.com forward slash juice box thanks so much to the Contour Next One blood glucose meter for sponsoring this episode of The Juicebox Podcast

we mentioned it in the episode but if you live in California and you'd like to use Erica, she she got a website. Erica forsyth.com Go check her out. She really is terrific. And you know what the Facebook page got mentioned a lot during this episode. It's a private group. It has 25,000 people in it now Juicebox Podcast type one diabetes, you have to answer a couple of questions just so the algorithm over at Facebook knows you're a real person. And then you're right in Juicebox Podcast type one diabetes, absolutely fantastic group. I'm incredibly proud of it and I think it might be valuable to you. I think that's about it for today. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Please remember to take care of your mental health as well as your physical health. It's all very important and one helps the other