Scott Benner 6/1/22 Scott Benner 6/1/22

#692 Afrezza Trial

Kim returns to talk about a Afrezza Trial

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

Scott Benner 0:00
Hello friends, and welcome to episode 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

#690 Singing in the Rain

Bricen has type 1 diabetes and 11 other diagnosed issues. His grandmother is here to tell us his story.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 690 of the Juicebox Podcast.

Cheryl's grandson has type one diabetes and the 11 other diagnosed issues. Among them are seizures, autism, mitochondrial dysfunction, and he is visually impaired Sharla and her husband are Bryson's primary caregivers. And they have custody of him. Bryson's story is interesting to say the least. And I hope you enjoy it. While you're listening today. 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 are becoming bold with insulin. If you are the caregiver of someone with type one, or have type one yourself and are a US resident, please head over to t one D exchange.org. Forward slash juice box join the registry. Take the survey, the whole thing should take you fewer than 10 minutes. Your answers to that survey are going to help people with type one diabetes, T one D exchange.org forward slash juicebox.

This episode of The Juicebox Podcast is sponsored by us med get your diabetes supplies from us med all you have to do is go to U S med.com forward slash juicebox or call 888-721-1514. Get your free benefits check today. The podcast is also sponsored today by Ian Penn from Medtronic diabetes in Penn takes the guesswork out of dosing by using its app that uses your glucose levels and carbohydrate estimates to recommend the dose that's right for you. It also does a lot more I'll tell you about it later. Learn more Get started today at in Penn today.com. The podcast is also sponsored by touched by type one all they want you to do is check them out. Go to touch by type one.org Find them on Facebook, or Instagram.

Cheryl 2:34
Hello, my name is Cheryl. And I live in Nashville Tennessee. My grandmother Bryson Henderson. Who is a medically complex child diagnosed with diabetes January 20 of this year.

Scott Benner 2:49
Alright, show a couple things. You know the word futzing? That's not a southern word. Stop touching things. Keep your hands up. So okay, so, Bryson is your grandchild? But are you do you care for him? Like is he live with you?

Cheryl 3:11
Yes, he is. My husband and myself have custody and we've had custody for the last few years. Okay, how

Unknown Speaker 3:17
old is he?

Cheryl 3:19
He just turned 15.

Scott Benner 3:21
When was he diagnosed?

Cheryl 3:24
He was diagnosed on January 20 of this year. 21.

Scott Benner 3:29
Oh, okay. So you're not even a urine yet? No. Okay. Without taking I don't want to hear too many of your personal details. But how did you come to be his caregiver?

Unknown Speaker 3:42
Um, his parents for

Cheryl 3:46
just struggling to keep up with the medical complexities that he had. And so he came to live with us for about a year. And after he'd been with us for a year, then we sought custody. And so he's been with us since he was 10. And we've had custody since he was 11 years old. We've always been very involved in those laws,

Scott Benner 4:12
even prior to that. Your daughter or your son's child, my son, your son shot, okay. Okay, so he's been with you for four or five years. How old are you? I am 63. Okay, husband similar age a little older.

Cheryl 4:30
No, he's older. He's 74. Sure, yes.

Scott Benner 4:36
Woo is at some point. Were you a trophy wife?

Cheryl 4:41
I am always been a trophy wife. No, I yeah, we've been 20 years I guess. I guess I'm considered a trophy wife. He might disagree. But I like that.

Scott Benner 4:51
Oh, that's good. I still think he parades you around to his friends and he's like, look at this one in our 60s. Okay, So any other kids for you?

Cheryl 5:05
Yes, I have another older son, as well. So I have two children, only one grandson. Well, actually two, one Bryson that I have custody of. And then Bryson has a little brother. He's three.

Scott Benner 5:19
And his little brother doesn't live with you.

Cheryl 5:23
Excuse me, his little brother doesn't what

Scott Benner 5:25
doesn't live with you? No. Okay. All right. I think I understand what our, I guess let's, let's start at the beginning for Bryson, how old was he, when he when he had his first medical issue.

Cheryl 5:41
He was born with a medical issue. When he was born, he was in the ICU for 10 days, he had trouble regulating his temperature. And it was obvious he has hypotonia. And that is where when you pick them up, there's actually no resistance at all. He has very low muscle tone. So it's also known as rag doll syndrome, because that's how they feel. And so it was known at the beginning he has a stigma, which is where your eyes involuntarily move, and that is a brainstem issue. So we knew from the beginning that there were that there were issues,

Scott Benner 6:27
okay. Hypo,

Cheryl 6:30
hypo, hyper tone, hypertonia

Scott Benner 6:32
hypotonia, I say, Okay, I was stopping at the wrong spot in the work. Born with that, in that's not something that's getting better, right. Like that's a lifelong illness.

Cheryl 6:46
That is, it is actually causing problems right now. He's in a efos. And he actually broke his foot, I guess, about five weeks ago. And it's because his muscles hypertonia is when it's like a rubber band. So when you are like you and I are or muscle is always, you know, tied and ready to go to some degree his arm has are extremely relaxed unless he calls them to us. And so the muscles in his legs as he gains weight are no longer able to hold his weight. So his ankles are collapsing. So he's in a efos. Now, just to stabilize the stance,

Scott Benner 7:33
and this is an autoimmune disease, correct?

Cheryl 7:36
Well, is a whole stems from what is called mitochondrial disease or dysfunction. And that is he was born with it. And it's where the body does not convert food and oxygen. And to normal cell function. It doesn't put it into the mitochondrial can absorb it. So like diabetes, it's an energy channel that is blocked. And because of it, he has the low muscle tone. He is cognitively delayed and has seizures. And he is autistic. And he has high anxiety. And he was born with optic nerve atrophy, where his optic nerve did not have the energy to develop correctly in utero, and he is visually impaired and attends our state's school for the blind.

Scott Benner 8:39
Sure, that's a lot. Okay. It is a lot. Yeah. Are you okay?

Cheryl 8:44
Oh, yeah, yes, yes. Yes. I mean, it's like all of this, most of his diagnoses came within, you know, the first three years of life. It's like, we knew he was having seizures. He, he first presented with apps and seizures. So he was having these staring spells. And we knew something was going on. We just weren't really sure. And I actually had to video one before they took us seriously, that really was seizures. And when they did the EEG, they estimated he was having probably 150 Absent seizures a day.

Scott Benner 9:24
Oh my gosh. Okay. Let me try to understand trying I'm trying to find context. So callback, can you tell me what an average day for him is? Like?

Cheryl 9:37
Yes, an average day for him. First of all he has. He's cognitively delayed enough that he does not realize that his life is any different than mine or yours or any other 15 year olds. So he is a very happy, very joyful child. He gets up in the morning. He slams I think he's talking right now he's into not not jokes. So while he's eating breakfast, he's telling me not not jokes. He's autistic. So they're the same jokes, the same, you know, five or six jokes all the time. But we both laugh each time they're told. And then he cannot bade himself all the way. So he showers and I help him. And then he needs help putting on some of his clothes, especially he can't, because of the hypertonia. He has very low fine and gross motor skills. So he's not at it's very hard for him to button blue jeans and the zip blue jeans. And so right now we're lucky enough that it's then that we can use kind, he can just pull up and down by himself. So I help him get dressed. And then he gets on the bus. He has his vision is impaired enough that he has to have a human bio at all times. So if you will just see me putting him on the bus. He would be holding my elbow and I would be guiding them on the bus. He goes to school, he loves school, all of his therapies are at school. The school he attends is actually a residential sim Center. We're lucky enough to live close that he can go. But since it's our State School for the Blind and blessed, bustin everywhere, so he has a wide variety of children. It's a huge campus, you know, they have an indoor pools, or he may go swimming, they have an indoor, oh, in LA, he might go bowling. They have a huge auditorium. And so they're always having, you know, one of the grades will put on productions or plays or the choir will sing.

Scott Benner 11:52
Does he have? I'm sorry to cut you off? Does he have the ability to manage himself? At the bathroom? For example, I'm a healer. He takes a human guide to the bathroom. But then does the guide help him through the whole process? Or does Bryson handle some of it himself?

Cheryl 12:10
No, he is self sufficient. We've got him to the point where he is self sufficient in the restaurant. So I mean, we're he you know, at the house, he would be sitting on the couch listening to music, just like any 15 year old would do when they got home from school. And if he has to go to the restroom, he just gets up and goes. Because he has autism. He struggled or used to struggle with privacy issues he did not understand. But we've really honed in us in the school I've really honed in on so he's more aware of

Scott Benner 12:42
that privacy like modesty.

Cheryl 12:44
Modesty. Exactly. He's Yes.

Scott Benner 12:48
Gotcha. Do you work?

Cheryl 12:53
No. I am a retired industrial engineer.

Scott Benner 12:56
Oh, wow. So you have your you have time to to, to be with him?

Cheryl 13:02
Yes. When I retired, I did take a part time job as a hearing screener for newborns at our local hospital. And we got custody, they actually when I had it was a part time job a lot of times just a couple of hours a day. And my husband would watch him when I was gone. He's also retired. He's a retired banker. So we so he was always covered by one of us if he wasn't in school,

Scott Benner 13:29
okay. When I don't, I'm sorry, I don't want to be like, I don't want to be a bummer. But I'm wondering in 20 years, what is Bryson do?

Cheryl 13:40
You know, in 20 years, that's the fear. Mitochondrial Disease is can be a progressive disease, and many of the children that are severely affected, do not live to the age of five. So we consider ourselves so blessed that Bryson's here, and then that he was not affected to that degree, even though he has a laundry list. They're all managed, and he's a healthy child, in spite of them. It's really, you know, yeah, we don't know what their diabetes is progression or not. Bryson, we've never found the gene that's causing the mitochondrial dysfunction. And so therefore, we don't have a path and we don't have anyone else to say, oh, you know, these are the organs that we have to protect because he has, you know, lays disease and it may be, you know, its brain and this is how it progresses. And we don't have any of that information. So we just go along, hoping.

Scott Benner 14:52
Do you just you just Yeah, every day. What conjugal disease is a genetic disorder, right? Is there a Anyone else in the family that has it?

Cheryl 15:03
No, no. There was not. It may be that they, they have done studies on his parents, and they haven't really found a gene that they both had. And that Bryson has, it can be a mutation in within himself. And that's what they're thinking, since they haven't really pick up on any genes, known variances. So right now, he's kind of an unknown. And that that in a way makes it you don't want to have a one to two B diagnosis. It's one of the severe sides of mitochondrial, but then again, we're on land and the unknown. And we don't know what to expect,

Scott Benner 15:47
do you have a number for how many different issues he has as a diagnosis?

Cheryl 15:52
If I had all of his diagnoses, like ADHD and everything, he has about 12 or 12 diagnoses?

Scott Benner 16:02
Which is a strange question, maybe, but which one of them presents you the most trouble day to day?

Cheryl 16:08
Now? That's a very good question. Actually, it's as autism on a day to day function. It is autism, keeping him to be able to actually talk and communicate he wants to and he is horrible. But he has a hard time processing, processing the words and getting them out in the order. He knows everything about diabetes, but if he like he was going to talk to his teacher about it. And so we were talking and he's like, Oh, that's a lot of words that I have to say. And so that's how he thinks he knows he has trouble really, you know, process and then it presenting it. So autism on a day in and day out basis. As far as his quality of life and what he sees, it would definitely be autism.

Scott Benner 16:58
Okay. And for you, is it the same.

Cheryl 17:03
Now for my it's the number one is is diabetes, but calm, because, you know, he's going through puberty, we had such a good handle. When he was diagnosed, he was like 11.7, as I once say, when out three months after he was diagnosed, it was 5.9. Okay, with 97% in range. And that was only because of this podcast, because I found it in the hospital. And so being an industrial engineer, I did a lot of research. And my main job was to look at something, analyze that and make improvements. And so here's my grandchild. And he has all these variables and everything. And they tell me about them, and they don't want to overwhelm me, and I'm, like, overwhelmed me, I have to have this knowledge. And it was the podcast that gave me the knowledge. So he came. I mean, we came home, and I was listening to every episode that you guys have, and it allowed him to get to 5.9 and 95. His last a one C was 5.3 with 95% and range, and a standard deviation of 22.

Scott Benner 18:28
Come on. That's amazing. Good for you.

Cheryl 18:32
yourself on the back, Scott.

Scott Benner 18:34
I thought you're, I'm being honest with you. I thought you were gonna say he was honeymooning when you told me the first day once Yeah, I didn't expect you to say the podcast was helpful. What's your range?

Cheryl 18:42
No, he's not honeymooning, he came out. He came out of his honeymoon and he's been out for he was probably only in honeymoon maybe the first three months. And he's it was very obvious when he came out. And luckily we got the pod on the pod about the same time he gave came out, man. He was still in honeymoon when he got the Omnipod

Scott Benner 19:07
okay. Hey, so with a 22? Is that what you said? Your your timing ranges 95%. Your standard deviation and standard deviation is 22. Yes. What range? Are you shooting for like 70 to 120? Yes. Is that right that I get it right?

Cheryl 19:26
Yeah. About that? Yes. We don't ever panic if he's, he can hang out at 7977. You know, we don't panic. We we know he we know how to get him up. His body responds very well. He has no idea. He cannot tell lows. He cannot tell highs. We can't tell any difference in the way he acts with lows that you can like pies. He gets irritable when he gets very tired. But

Scott Benner 19:56
I have a question that this might take a turn that you're not expecting but Between your background and your situation and your age, you're you're doing an amazing job. So thank you. No, I mean, honestly, this is, I mean, that'd be hard to argue with. I think that's a pretty obvious statement. My question is diabetes specific. What did you take out of this podcast that you were able to put into practice? Like, explain to some, somebody else who just heard you say that and thought, Oh, great. I'm in my 30s, my kid doesn't have autism or any of these other problems. I'm nowhere near these numbers. Like, why is it? What is it about you and the information that blended so well together? Do you see the intersection? Do you know what it is?

Cheryl 20:46
I know a lot of it is my background. And even when I was in the emergency room, I was hearing bits and pieces of everything. And I was putting it together and learn why do you ever medical Brett Graham? And I said, No, I don't, I'm just putting pieces together. And my brain. Fortunately, for diabetes, that's how it works, it looks at things and it automatically takes information and stores it and puts it in kind of what I perceive to be a logical order. And so that's how your podcast is, it's very to me, in my way of thinking, it is very logical. And it was very soothing for me to be able to go on a pod pass and hear about how to deal with protein and how to deal about, you know, deal with fat. And so I knew, so it was no longer scared. And I was no longer wondering about you know, about the spikes, or going in and hearing someone's story, and I can relate to it. And I'm like, oh, okay, you know, and even if it's someone's story, like someone's listening to mine, and it isn't there a path, but they still might learn something for or it's interesting to know that you're not alone. And that even though everyone might be on a different path, we're still on the same journey.

Scott Benner 22:04
I'm stunned that I'm logical.

Cheryl 22:07
Oh, you're very logical. I perceive you to be very logical, I perceive most of your guests to present themselves in a manner that was very helpful for me.

Scott Benner 22:20
Yeah, their guests are terrific. Always. And, yeah, it's just those these conversations are so valuable. But I mean, I'm joking a little bit. I believe that I'm very logical about diabetes, and how to manage it like moment to moment, day by day. It's just that if you could see the rest of my personality, it doesn't really jive with that, you know. So it's sometimes I think of Mike, I don't think of myself, like you do. I see myself because I see myself in a completely different way. Like, if I got on here and really started saying what I was thinking, in 15 minutes, you'd be like, I think this guy's out of his mind. But I just, I see very strange connections to things and, and I like to joke about ridiculous stuff. And I don't know why I'm, I'm I don't, I'm just thrilled. I seriously I'm listening to what, what Bryson's life has been and, and you know, then you get, I mean, he gets diabetes, you must have been like, Are you kidding me? Right? Like, I mean, you gotta go in a room, put a fist through a wall or something then right?

Cheryl 23:22
I could not. Now, my husband is diabetic type two, and has been for 20 years. Bryson had been over his parents, and for the weekend, and they told me that he wasn't feeling well. And so he came home, and on the Saturday on a Sunday, and that night, he went, he has his own little refrigerator, and I was visually impaired and everything he has is in there and, you know, arranged specifically for him. And he was out of drinks. And he went in all hours and was getting in during the night and drank four liters of drinks. And his father had been listening to a rap song that started with week get drunk. And so, Bryson they noticed he was drinking a lot. And he told them, they had explained what drunk was he they just said, People drink tonight. So he told them, he was going to get drunk. And so he was drinking all this fluid, but saying he was doing what the song said and getting drunk. So you know, they got a kick out of it. And actually, that Monday, he had an appointment with his behaviorist for his autism. And it was on it was on Zoom because of COVID. And we were talking about him drinking. And, and, you know, his doctor was kind of laughing, you know, because he was drinking a lot because he wanted to get drunk, but he has no concept of drunk eels. He just knew you had to drink a lot. had to get this whatever drunk was. And so I'm like, okay, okay. And then he started throwing up. And I call this doctor and she said, there's two different stomach flu stomach virus is going around. Well, because of Bryson's mitochondrial he easily hydrates. And so his whole life, if he has long periods where he is is throwing up, then he has to go into the hospital for fluids. So I told the doctor 100 up and he was still throwing up, and he was still thirsty. And I'm like, You're gonna throw it up. And he's like, I don't care. My body says, I have to don't mind you, I still never thought of diabetes. So I called the doctor back and I said, he's still sick to the stomach, you know, call Vanderbilt. That's where we go Vanderbilt children's and it's the top hospital in the southeast, we're so fortunate to have it. So they open, you know, they called and said they were on their way. He was able to walk to the car by himself. If he's in familiar settings, he he doesn't need any help navigating. So he made himself to the car, by the time we got halfway to Vanderbilt is about 15 minutes away. He said, I can't keep my seatbelt on everything, all my body hurts. And he was like in the floorboard with his head on the seat. So I turn on the flash or you go there. And he lost consciousness by the time we got there. And, you know, the nurses came, and they had everyone in the emergency room. And they said, Is this sugar always high? And I might do what and it was, their monitor was like, over 700 At that time, and you know, some of the nurses were logging in, and the doctors, I mean, they came up and they were like putting their hands on, you know, Army and saying, you know, we know, this is a lot. We know, you know, he has a lot and because if you just look at the list, you don't know how that child is going to present. So they saw Bryson lane, they're not cognitively aware. And they were like, Is this his normal state? And I'm like, No, but you know, epileptic, especially if it's uncontrolled with his he's, you know, topped out on three seizure medicines. And that can cause severe brain damage mitochondrial can cause severe brain damage. So, you know, they they're, they're politely asking, Is this how we always see as and as we turn them normal? No. And so they're keep on asking me this. And I finally thought, I'm going to show them my phone, because my screensaver is a picture of him when he got his new phone. And he's just beaming. And you can look, and you can tell by looking at the picture, he looks like a typical 14 year old. Which when the pitcher was typing, and I'm like, This is him. And you could just say, oh, and so they're, you know, they went in and was talking now he's, you know, he's always horrible. And

so, yeah, I had, we had no idea was coming. I asked how he was severity. And they said he's an eight out of a 10. And they were given ready to give him and I think it was called a hyperbolic solution. And they said, he's an add on for 10. And we'll know exactly which way he's going to go when we give this to him. You know, and it's not like the movies where they just push you out. And you don't see all of this. I mean, I sat there and watched and go in and out of consciousness and there was no washering there was no, you know, standing there. And they gave him the solution. And it just makes him he just came up gasping and that lasted for like two minutes, and then he like back down. But that's all they needed to see was just that two minutes of him being aware for them to know that he was probably going to decrease from our seven at some point as opposed to go into a nine or TM

Scott Benner 29:13
and that and then that affected how they helped him next.

At first glance, the in pen looks like any other insulin pen that has a cap and a needle place for you to put your insulin cartridge. You can see your dosing window, you know, and there's a button on the end. But there's much more to it than just the pen. There's also the app that shows your current glucose levels, your dosing calculator, active insulin remaining meal history, dose history and activity log glucose history and reports. That's right, because you're in Penn connects to its app, giving you much of the same functionality as it insulin pump, and it does other things as well. You can avoid missing your insulin doses by setting a dose reminder right in the app. Do you need carb counting support? That's no trouble because the Impact app can help you estimate carbs based on your meal size. There's also a fixed dose option that allows you to choose the same carb amount for a specific meal every day. Now, it's the part where I tell you that if you'd like to learn more or get started with the M pen, go to in pen today.com or click on one of the links in the show notes of your podcast player, or at juicebox podcast.com. In Panama requires a prescription and settings from your healthcare provider, you must use proper settings and follow the instructions as directed, where you could experience high or low glucose levels. For more safety information visit in Penn today.com. We all get diabetes supplies, you could get yours at us met. US med has an A plus rating with the Better Business Bureau. They accept Medicare nationwide, and over 800 private insurers. US med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the FreeStyle Libre two. And the Dexcom G six, don't want to be bothered ordering every month. That's no trouble because us med always provides 90 days worth of supplies. And they have fast and free shipping, better service and better care. Because what US med wants you to have. They've served over 1 million diabetes customers since 1996. And you could be next, go to us med.com forward slash juicebox. Or call 888-721-1514 To get your free benefits check. So you can get started with us, Matt, there are links to us med in pen from Medtronic diabetes, and all of the sponsors in the show notes of the podcast player you're listening in right now and at juicebox podcast.com. Like to make that testing drove what they did next then exactly

Cheryl 32:37
well, they they were because of the mitochondrial disease they had they slowed down everything they were going to do the dka I didn't even know that what that was they were telling me we're doing DKA. And I hear them talking about DK and I'm like, I have no idea. You know what that is. And then they stopped the protocol because of his monitor contrail dysfunction. They called the geneticists, and reviewed everything they were doing with his geneticists, to ensure that their protocol was not going against his mitochondrial protocol, which he also has. So usually, when he presents in the hospital, you know, they treat the child for the symptoms. And as they did with the diabetes, that there's also like, he can have lactated ringers, and that's something that's often automatically given to people, and he cannot have those. So they have to follow the mitochondrial protocol. First, and then the diabetes. So, you know, while he was in this perilous state, they were stabilizing him, but at the same time trying to figure out his course of action, where the diabetes and the mitochondrial dysfunction could both be treated effectively without one negatively impacting the other. Yeah.

Scott Benner 34:00
Oh, my gosh, you're by yourself in there with them. While this is happening. How long were you there? Like how long did all this take?

Cheryl 34:07
In the emergency room, they, once they found the protocol, we went from the emergency room to have they did a lot of things in the emergency room. We were there were a total of five days, three of which he spent in ICU. And so yeah, we were there five days and yes, because of COVID It was only it was only me. Now my sisters did come to see me once in the parking lot. And, you know, that's probably the hardest I've ever cry. I was say I had such a fear because of his autism that he would get home in would not allow us to prick his finger and would not allow us to give him an injection. And that was such Fear of mind that he would in cognitively he would not be able to understand why. Why I was trying to do this and he, you know, was 14 when he was diagnosed, he was way too big for us to hold down. So if he said there's no nerves and no injection, there wasn't going to be any injection. So that was my biggest fear. And it was just one more thing of a his laundry list.

Scott Benner 35:26
Yeah, no cheese. No kidding. Has it been an issue ever? Or how did you get him to be okay with all this because he's wearing a CGM. I mean, you don't, right, I just want a CGM and a pump.

Cheryl 35:39
Exactly. He was so sick. That he has since the add on to me for not calling a name. Because he said I was too sick, you should have called an ambulance. So even though he didn't, he doesn't understand the true severity of how sick he was. He knew how sick he was, you know, he knew he had never felt that way. And he knew he never wanted to feel that way again. And Vanderbilt has a fantastic tava life. And so they worked with him a lot. The nurses that were diabetic, type one diabetes came in and would talk to him, you know, when they were on shift, even if they weren't his nurse and said, Oh, I do this, and this is what I do. So by the time he left, he was used to the injections. He was pricking his finger has never bothered him. So he was used to that he was used to the interactions. And you know, basically, it was like, Bryson, we have to do this, or you're gonna get sick again. And he's like, I don't ever want to be that sick. So he was aware enough to know that he had to have this. And he still asked, when the doctors are going to his his pancreas, he's still hoping for cure just like everyone else's. You know, he doesn't want diabetes, but he's very, very compliant, and always has been, I think, if he had to go back to injections, we would have some resistance, because the pod is just so easy. And so life changing. It made our life so much easier to ask a question.

Scott Benner 37:22
So he's, he's, he's asked me about, like, you know, can diabetes go away? But the rest of the rest of the stuff that's going on with him, you said that he doesn't see himself as different. So he doesn't ask about any of the other stuff. He's never asked about any of the other issues?

Cheryl 37:40
No, yeah, only thing they only thing that he is upset about is he cannot drive. But not only is he visually impaired and couldn't drive his epilepsy, they just did an EEG. Because he started presenting with different kinds of seizures other than just absent. And he that came back, you know, that he was prohibited from driving. So you know, he has two conditions that he couldn't drive anyway. But he wants to drive. And we just had that discussion. And we've had it a couple of times that, you know, he just can't see well enough to drive and not to worry, well, if he ever wants to go anywhere, or take him and we're Oregon, always going to take him. But unfortunately, he's not going to be able to drive in there's intellectually intellectual ability, but on a day to day other than driving. He has no idea. And as a matter of fact, when I was his school is fantastic. And they actually called Omni potty in to do a presentation showed them how to fill the Omni pod. And when the representative had finished training the school because they have a full blown clinic because they have the residential program. So we're fortunate there. And when when the representative was late leaving, she told them she said, if you really want to know about diabetes, listen to Juicebox Podcast. But that wasn't on that was yeah, that was the Omni pod representative. So they've always been on board. We had a big meeting before school started before we ever walked in. And it was all the teachers that he was, you know, gym teacher, speech teacher, everybody was there. And they were talking about what he could have ate and I said he can have anything to eat anything he wants. You just have to cover it. And

Scott Benner 39:46
what's his diet like?

Cheryl 39:49
That is another thing that that's another thing that's really changed for the better since diabetes. Because before he had a very limited diet very limited, I mean, you know, he would eight, maybe 10 foods and now he will eat anything just about that's put in front of him. He doesn't like coleslaw, but he will eat any kind of vegetable broccoli, cauliflower, anything and put in front of them, he will eat now. And that changed because of the diabetes because you know, we said your body has to stay healthy. And you know, we you have to eat healthy in order for your body to be able to work healthy. So once again, as sick as he was was the one thing that helped him with his even with his Stiltz abilities to understand how serious diabetes could be

Scott Benner 40:50
that TK had a real impact on him. He's not Oh, yeah, he's not going to forget that anytime soon. And it's it's interesting, isn't it? Because that's the what I want to say here. That's the reaction you would expect from everyone. But because he's not encumbered by the other, like some of the other things that that a person, maybe without his issues is unencumbered by like, like, just simple things like his own personal desire, right? Like, he doesn't think about like, I just want to be happy, you know, or I want a pizza he he's gets this feeling of like this hurt. I'm not going to do this anymore than he doesn't question again. Is that right?

Cheryl 41:36
You're exactly right. And the thing is Bryson does not express pain. He has passed a kidney stone we've never known. I don't again, I referred earlier, earlier that he had a broken bone. He never told us that his foot hurt. I noticed he was limping. But he's he promised nothing to hurt on is that I take him to the doctor.

Scott Benner 41:58
Is that the high blood pressure? Or Is that him just being resilient? What do you think that is?

Cheryl 42:03
I think a lot of it is I think his body is in pain, because of the hypertonia. And the muscles. I think he has, you know, some pain. Not on a high level. But I think he's used to dealing with pain, and his autism disallows him from once again, really processing what's going on. He has migraines, and he'll tell you he has a migraine. But other than that he won't he doesn't acknowledge pain. It's scary. That's yeah. Yeah, that is scary. But he he realized how sick he was. With the diabetes with the diabetes. He couldn't express. He couldn't express how we felt us. But he knew how he felt.

Scott Benner 42:49
Yeah. Does he have a? Have they ever talked to you about his lifespan? What the hope is for him?

Cheryl 42:59
Well, that's why when he was diabetic, once I got over the shock, my first question to everyone was, Is this the progression of the mitochondrial disease? Because mitochondrial can affect any organ in the body and cause, you know, a dysfunction? And and they were not sure. And once again, that's because we haven't found the gene. So we don't know, the path that his body's going to take. So we don't know if this is progression, or if it is just he's diabetic. Okay, all right. And the life expectancy we don't know. But, you know, 5.9 5.3, I'm going to do and his parents are committed, and my husband, everyone who controls his diabetes, they keep him in range, because we cannot control anything with him with his with all of his disabilities, there's really nothing we can do. We can try to give him therapies and supports the we can't really physically do anything to help him. But now the diabetes we can. And so my gold is in and fit when he's 50 or 60. For him to never be in a position where the diabetes, something that we could control, cause any complications. But there's crossovers from the complications because mitochondrial your stomach takes a lot of intestines. They they take a lot of energy. And so you know, Gastro paralysis is very common in my dough, but it is in diabetes, too. So if something like that happened, it would have be a result of the mitochondrial or you know, or what advancement of Maido or advancement have a complication of diabetes. So whenever anything happens to him, like if he were to have a seizure before it was and we're not talking about the absence seizures, we'll talk about that. tonic clonic what everyone classically thinks of as a seizure? When he has one of those? Now, it's like, is it that combine, you know, is just just a seizure? Which is what we thought before? Or is he's low in his Dexcom? Showing, you know, 79. But he's really lower than that. Yeah. Because we don't know if this Thresh hole, you know, we don't know if his threshold is going to be the same as a diabetic because he's already epileptic. So that's an unknown variable. And so there are things that now when something happens, we can't just look at what we did this that one diagnosis, now we have to also look how diabetes could have affected it. And so you know, you just have to go down like this little tree to find out, and you can't really check a child's blood when they're seizing,

Scott Benner 46:00
right? Yes, you just what do you do you assume it's the seizure disorder first, if it's, if the aim is, is reading well, okay, I have a couple of more like psychological questions for you. So my first one is, Does having something like diabetes that's more manageable, like, like, cause and effect management? Does it make you feel? Does it make you feel better? Because I hear in your hearing your statements, that you think a lot about what's coming? And what could come and you don't feel like you can stave off any of the other problems? They're going to just progress if they're going to progress? So do you get any comfort from managing the diabetes?

Cheryl 46:46
Wish with everything that he didn't have it? And but yeah, I do get comfort of the control because his epileptic is intractable, which means they never don't never get it under control. We know that his seizures are progressing and presenting in different ways, which, I'm pretty sure he's going to be diagnosed in the next couple of weeks when he goes back to the neurologist with a epileptic disease. And, yeah, I I'm one that likes to control things, especially with someone that you love so much. And so I do find comfort in the fact that this is the one thing I can do for him that medically I can have a positive impact.

Scott Benner 47:42
Sure. Are you at all impressed with the intuitive nature of my question? Because I am

Cheryl 47:47
Oh, yeah. Yeah, no, all of them, all of them, because you're asking the right questions or asking the things, you know, that that are wanted to, to do, but you're going back to what I was saying about him not knowing anything, and when I was talking to his school, and she said, Okay, so at breakfast, this was his teacher, she was like, okay, at breakfast, if they do a math, and we just won't give them a muffin. And I'm like, you know, the child always comes before diabetes. And he doesn't know anything else that he's missing out on in his life, he has no clue, but he knows is missing out on the muffin. So given the muffin, give him anything, treat him like anyone else cover the carbs. But he knows that he's missing out on the map. And then it was just like a metaphor for just like everything. That's how it felt like when I was saying that it was more than just the muffin. It was just for everything else that was thrown at him. Do everything you can to make him His life as normal as possible.

Scott Benner 48:54
You sort of get that feeling sometimes, like you know what, I've made a lot of concessions. And I'm, that's it like I'm done making concessions. So we're gonna figure out another way around this issue and it whether it's eating the muffin or something else. You just get to that, like, you know, I've I've had all I can stand that I can't stand no more. And that's it. We're going to we're going to make a stand right here. We're going to we're going to say, figured out you figured out how to Bolus from off and obviously you've amazing standard deviation and agency and time and range. How did you figure it out? Just this was the

Cheryl 49:27
school but it has to do that. Really? Yes, the school is the school. Like I said they are very, they called the Omni pod representative. Within the first the second day of school, they had gone through all of their menus and wrote down the carbs per serving. They had even gotten to the point and this is the school that had even gotten to the point where there were different brands that say care It's, and they had different carbs. And so at every day, they call and say, Okay, you're having carrots, which brand of carrots are you serving at lunch? And so as you can tell, I am so blessed that that's where he is. And if there was any question there forever, you know, calling and saying, you know, this is where he is. And you know, what do you want to do? So I have a very good relationship with the school. And so they're the ones who figured that out. He is running higher at school, like at lunch, they do have at the Bolus before and the other half after. And so there was not the Pre-Bolus. So he goes, Hi. i During lunch easily,

Scott Benner 50:45
did he show a propensity for not finishing his food? Is that why they did that?

Cheryl 50:51
They weren't really sure. But now his thing is, he used to eat more than they say, you know, it's not uncommon for him to eat two lunches. And if you saw him, he's five, six and a half and 107 pounds, so he's extremely thin. But he eats,

Scott Benner 51:10
well, maybe, maybe they can get past that idea and just give him all the insulin at once, instead of splitting it before and after, like, maybe a time Sorry, go on. No, no, I didn't mean to cut you off. But maybe with time, they can get comfortable.

Cheryl 51:25
And that's what I'm hoping I'm hoping at least that they can Bolus for the full lunch. Because I would rather say them Bolus for 50 carbs or, you know, however many. And if he eats 40, then give him you know, a couple of sips of juice, give him something to cover it other than just letting him go to 200. Because there's not really a Pre-Bolus. And the ins, you know, all the foods hitting before the insulin is that they they understand it. You know, I explained exactly how, you know, how it went, how it proceeded. But that's just their comfort. And I know a lot of schools, that's the only issue I have with them is that they won't Bolus Pre-Bolus him his full carb camp for lunch.

Scott Benner 52:14
And you do it at home. You don't have any trouble with it.

Cheryl 52:17
Yes, yes, we pro Pre-Bolus. He's going through puberty, as I said, and we're finding this week that everything that we thought we knew, he's still spiking on. So I'm in the process of reevaluating his Bolus. And then looking if we need to do something else with collaborations.

Scott Benner 52:43
Can I ask question, I'm

Cheryl 52:44
doing the basil first. Not the bonus. The basil. I'm doing the basil first.

Scott Benner 52:48
I have a question. It's completely away from all of this. So can you just mentioned that he's, he's, you know, coming up on puberty? What do you what do you do when he starts having, like sexual desires? I know he's known. But have you had to have thought of this? Like, what do you? How do you handle that?

Cheryl 53:08
Well, we, it's already presented itself. And especially when he pre diagnosis, he was getting erections constantly, much more than I thought was normal. And once once we got his blood sugar under control that that decreased, like 80%, which is a aside from what you asked, but just I thought very interesting. But now we've we've just told him, this is why your body's you know, this is what's going on with your body. He has, he doesn't know what to do to satisfy himself. He hasn't discovered that yet. But we just talked in general terms that were pretty specific, as far as he wanted to know that if that happened to everyone, and it was going to continue to happen. And, you know, you couldn't touch yourself in public once again, you know, I started, you know, saying that he has no modesty. So, you know, you could not touch yourself in public. Try to say when this happens, you know, put your hands or you know, trying to do things because those he needs to be typical, like any 15 year old and in a part of it is just his dignity. And so we've we've touched upon it, and he's done really. He's done really similarly. Well. That's excellent.

Scott Benner 54:47
So far. Yeah. And by his dignity, you just mean like how how people see him like you don't want him to come off, like out of control. Is that right?

Cheryl 54:59
I don't know. Once you felt, you know, I don't want him walking around with an erection in him ever been, you know, one, one teenager nudge another and then saying and look at him and bars and be totally unaware because he is unaware. So it's just like, you know, that happens to everybody just kind of put your hand in there. And so that to him, that's just part of having good manners to him. That was just like saying, Please, and thank you because he doesn't understand anything about sex or any kind of sexual and we didn't go into that we didn't go into why that part of your body, because unfortunately, that's going to be another part of his life that won't ever be utilized or that he'll ever have. Or we don't foresee that. And so we didn't go into details. It was just more the good habits of it.

Scott Benner 55:53
Okay. That's just wondering because I imagined you'd thought it through. Shall there's a part of me that imagines that you've thought everything through. So

Cheryl 56:01
as much as possible, you know, he's 15 years old and has to go in the women's restaurant.

Scott Benner 56:05
No, I mean, beyond that, Cheryl, like, if you find a genie lamp, you know, your, you know, your wishes already. Like, have you like, What haven't you thought through is what I'm saying? Like, if you find a lamp on the beach, and you rub it, the genie comes out? Do you already know what you're gonna ask the genie for? Have you thought through that? What happens if there's a fire? What window? Do you go out? Like, I feel like you've got everything?

Cheryl 56:25
Yeah. Yeah, all that. We have fire drills with Bryson forever. for just that reason, if we're on one end of the house, and he's on the other because he is able to, you know, as I just said, he mobile, you know, he's totally mobile in our house, they can go and do anything is totally free to do whatever he wants. So for year, one and a half, and he's in the other and the fire alarm goes off, what is the closest door because that's not something that he is going to automatically think he is not going to think, oh, I need to go out the front door. So that's what we do. You know, we've actually set the alarm and had you know, drills just like they do at schools and say, okay, the fires in the kitchen, which door? Are you going out? The fires in the garage? Where are you going? You know, and you know, the fires in the living room? Where are you going? So we do those scenarios, so that he can it will be automatic to him.

Scott Benner 57:21
I think I want you taking care of me what's for dinner tonight?

Cheryl 57:25
All right, already. That's that's a downfall. Okay. You know, that's what my husband wouldn't say I was a trophy wife. Because he you would have to ask him what was for dinner? Because he actually does more cooking than I

Scott Benner 57:39
thought. I thought you had the whole thing set up here. No, I

Cheryl 57:43
don't. I'm not the whole package. 99% As long as you don't expect a chef. Oh, that's

Scott Benner 57:49
excellent. Oh, my gosh. Before we started to record, you kind of you you said you were like excited to meet me. And I have a hard time understanding that. So because you're such a together thoughtful person. Can you explain it to me because I don't understand. I'm being genuinely serious. I don't know why anyone would come on here and be excited.

Cheryl 58:15
Okay, you know, start dismay, shock even more, but I am tearing up. Because to sit in a hospital room with a child who's already some medically fragile and have diabetes thrown at you. And you just feel like this is one more thing that can't be controlled. And then you Google diabetes. And you start listening, you visit different pages, and you start listening. And finally you hear a voice that to you is a voice of reason to you. It's a voice that you can follow. And so I went from feeling totally out of control and in panic, that I was going to take this child home, not even knowing how to take care of him. I knew I could. And that wasn't anything that they told me. That came from the pipe house. I came home and immediately I mean, that's why I spent my time in the hospital was listening to your podcast, and it gave me comfort. And that was from you. So as as I said I live in Nashville, I ran into quite a few you know, country music stores. And and I'm like, Oh, there they are. That's great, great. But I'm like oh my gosh, I am going on the Juicebox Podcast and I am going to talk to Scott. And maybe just maybe someone will be sitting in a hotel room and you will give them through your Odd cast comfort, and you will give them hope. And you will give them a sense of control that had been ripped out from underneath me. I thought I knew how to take care of him. And then I found out I didn't. And you taught me how to again. And it wasn't any. I mean, Vanderbilt has a great program, they have a clinic, but they're not the ones who taught me how to take care of boys. And that was you. And yeah, so yeah, when I said I was a band girl, or a fan woman, I guess I should say, since I've already told you my age. So yeah, I'm definitely a fan woman, and I'm definitely you just, you just don't know how much your voice has meant to me. And now it's pulled me up.

Scott Benner 1:00:50
Thank you. I, I honestly don't know what to say. I feel like anything I say would be ridiculous. So I'm just gonna say thank you. I'm incredibly happy that that worked out for you that way. And I do agree that you being on the show will be someone else's episode that they that they land on when they're in the hospital or unsure our whatever moment of need. strikes them. How about your I know you're not? Listen, I'm not trying to paint you as like, like 150 years old, but I don't think 62 year old.

Cheryl 1:01:26
Thank you so much. I may not be your fan if you if you hold that steady state.

Scott Benner 1:01:33
No, I'm just trying to get to the idea that I don't think that 62 is the average age of a podcast listener. Did you listen to podcasts prior to that?

Cheryl 1:01:44
No, no, yours was. I had that. I mean, I am active on social media, Instagram, Facebook. I don't post a lot. I follow a lot. So I follow podcasts. I mentioned to therapy dogs and Crisis Response canines. So the podcast and things that I followed. Were 100% directed towards that if every podcast I listened to was that, so I did not listen to medical podcast. That wasn't a point of interest. I never would have found your podcast or any other medical podcasts and yours. Yours is the only podcast I listened to because I found out really, really quickly that you spoke my language you presented information in a way that made sense to me. So I discounted the the other podcasts.

Scott Benner 1:02:48
Can I want to dig into that for a second? And not I'm not trying to I'm not trying to make a funny statement. But it? Did you try a number of them. And mine fit you the best or did you try mine? It fit well. So you didn't go look at the rest of them?

Cheryl 1:03:03
No, I you know, I did. I did several women and of course we're not going to name them but I did you know I did snapper all the Facebook's you know. And some of them I still do on Facebook. But your was the only podcast once again because you spoke my language. And it wasn't not that the others are fluff but they were fluffier. And I didn't want fluff. diabetes is not a fluffy to me. It's not fluffy. There's no fluffiness about it, you know, give me the cold, hard facts. And if they're bad, then I want to know them. You know, because my mind is automatically gonna say it's bad. What can I do to make it better? And so I fit very well in your in your podcast, and in my mind. Yeah, that's just how I think and the others were too, too general, too. I couldn't get anything. I couldn't get anything useful on how to care for ball. I said not the nuts and bolts of how to care for Bryson and your podcast has nuts and bolts.

Scott Benner 1:04:07
Oh, that's excellent. I I guess I'm extra interested because yesterday, a fan of the show sent me something they saw online where a person said that they didn't think this podcast was good for newly diagnosed people. It called me a micromanager and I read the little blurb and I thought I don't I don't think those are accurate statements about me. But I think in general, I think the podcast is great for people who are newly diagnosed for the reasons that you just said, because why spend a bunch of time hearing stuff that's not going to be helpful or isn't complete information. And I don't see I mean, it's 141 I think maybe two hours ago I said to Arden, like you should Bolus more, but I don't talk about our diabetes a lot with her at all really? You know, so I mean and over the years it's been done Finish. She's been younger. But I also don't understand when people think that you, I don't know if it's micromanaging to, you know, help a kid Bolus for a meal and then check in on it to make sure that you hit the Bolus, right. And you're not spiking, like, is that micromanaging? Or is that just reasonable use of the insulin? So

Cheryl 1:05:17
I think that's teaching. I think that is teaching. I think that as a parent who wants their child to be successful when they leave the house, and are given them the tools to let them be successful, I don't see it micromanaging. Bryson would never we'll never be able to manage his diabetes. And so we never have to do with the teenager inks where they, you know, aren't bolusing other aren't taking, you know, corrected the correct measures to keep the numbers in control. But I can guarantee you, I would be like you, I would be micromanaging. Because, like I said, I don't see that micromanaging. I think that teaching good life skills. And that's, that's how I view.

Scott Benner 1:06:00
Yeah, I think that sometimes people's first reactions are not always right. But that doesn't stop them from never reevaluating what they're saying, you know, I think that you could hear me say that I, you know, Tech Stars, and hey, Bolus a half a unit in the middle of the day, and think that's micromanaging. But you know, there's a world where the way I think about it is, if she doesn't get the one ad during the day and sit there for three hours, then we won't be bolusing Bolus and bolusing later in the day, and then causing a low at 11 o'clock at night. And like I see it as a more holistic big picture. And anyway, I was just very faint. Thank you. Yeah.

Cheryl 1:06:44
That's why the podcast is so good, because that's exactly how I think you know, that's, that's what I do. You know, this budget nudge. I'm all about budgeting and nudging.

Scott Benner 1:06:54
Also, I'm delightful, right? Yes.

Cheryl 1:06:58
Cheryl, do you like to call me an old lady then? Yes. I'm not gonna call me an old lady than your delight

Scott Benner 1:07:03
department in the episode where people are like, Oh, what is he going to end up calling my episode?

What? Do you like my sense of humor? Or do you just like the way I talk about diabetes?

Cheryl 1:07:16
Oh, no, I like your sense of humor. Okay. I mean, I find everything very entertaining. You know, I was nervous about coming on. But it's because I had, it meant so much to me.

Scott Benner 1:07:27
My expectation was this, don't you? Like you want this? Yeah,

Cheryl 1:07:31
yeah. And I have you've asked the right questions. And I've been able to say what I've wanted to say. But it was just that I could present myself in such a manner that I would help someone. But you've put me very much at ease. But no, I was never nervous about speaking to you, as much as I was just getting the information across.

Scott Benner 1:07:54
Well, you did. You were excellent. I we've been talking for an hour and 15 minutes.

Cheryl 1:08:00
Okay. Let's start talking.

Scott Benner 1:08:03
Oh, you are chatty. I could have left a couple of times. But, but I but you also know me if you weren't. If your what you were saying was invaluable. And entertaining. I would have interjected. And so and so I love the way you laid this all out. I thought it was terrific.

Cheryl 1:08:21
Okay, well, good. Yeah. I also think we're fans of each other. Right? Well, yeah.

Scott Benner 1:08:25
I also think this shows a little bit of growth on my part over the last couple of years, because you know, I would have not like I would have talked more a couple of years ago. And I'm getting I'm getting better at listening. So yes, I'm getting better. You're

Cheryl 1:08:37
right. Yeah, you're right. There were times Yeah. Yeah. at the, at the first there were times where people were saying something. And I'm like, wait, you know, there may have been a little more nugget there. Yep.

Scott Benner 1:08:47
I'm starting to be able to quiet the little voice in my head. That's that says keep it interesting. Move on. And, and I'm willing to listen for another 30 seconds. But I have to tell you, when it happens, and nothing comes in those 30 seconds. I'm like, oh, I should have should have moved on. But yeah,

Cheryl 1:09:07
yeah, it's just yeah, I can. Yeah, I can. I can totally, I can totally understand, for

Scott Benner 1:09:13
sure. Because of, you know, a lot of the things you said today make my point. But I am aware of how valuable the podcast is for people's health, and their sanity and all that other stuff. But I'm also acutely aware that if this isn't entertaining, no one's going to listen to it. So it could have the secrets to the universe and it but if it was boring, you might you're not gonna make it through it. And so I'm always trying to balance Listen, ability with content so that you get what you need. And don't bail on something before the good things get set. And you know, that just, it's just true. Like I know it sounds crazy, but you could put the secret to life in this podcast and if 45 minutes into it, you're bored you'll you're just not going to make it and So you kind of have to that's all. I just,

Cheryl 1:10:04
I mean, you're you're exactly why didn't you are entertaining? Um, you know?

Scott Benner 1:10:08
Yeah. Like, what's his name in his prime? That guy with a dance with the umbrella? Yeah, I'll never think of that. Dammit. You're like, I'm not even I'd love to know who you're talking about. The City and the ring guy. Who am I talking about? Oh, God. I don't know what hold on Jesus. I'll figure it out. Well, I figured it figured out I guess if I can remember how to spell saying I'll be okay. I was gonna bother me because as soon as I see gene Kelly's name, I'm gonna know I mentioned Kelly dammit, Gene Kelly. That's all I did I reach back to the 50s the thing I was born to literally seven days.

Cheryl 1:10:49
Okay, well, and and I will let you know that I did say the last two years of the 50s. But I didn't I wasn't old enough to watch when Jane Kelly and Auburn hit.

Scott Benner 1:11:02
I have it right here now. Jean Kelly. Donald O'Connor Debbie Reynolds.

Cheryl 1:11:10
Oh, Debbie Reynolds. Yeah. Yeah. That's, that's too far back for me.

Scott Benner 1:11:15
You know, your episode could be called singing in the rain. There could be because you're really upbeat person. And this is not an upbeat situation. So,

Cheryl 1:11:26
no, it's not. And you know, everyone has their their moments. But

Scott Benner 1:11:31
what do you do in those moments? Cheryl? When it's too much, what do you do?

Cheryl 1:11:37
I'm not really a crier. I have two, if I'm totally one of them. I read. But, and you know, it depends on what it is. If it's like his seizures, and they're and they're, you know, getting new seizures. There's not a lot I can do. So I just like the mine and Gaston and that's what I'm pretty sure is going to be diagnosed with as a seizure disorder. And it's just learning everything I can about it, but I can't do anything about it. So when I'm really down there, it's to seek information and then realize there's nothing I can do about it. And I just have to resolve that within myself. Because that's probably my what bothers me the most is when something presents itself, and it's progressing like it seizures are in there's, there's nothing that can be done, you know, the teacher, the doctors are scrambling to add medications and change doses times. And so that's, that's probably my dark place is when I can't control it. So I just have to resolve that. And myself, I hate not being there's nothing else I can do.

Scott Benner 1:13:05
No, I agree with you. I think it's a smart thing. My mom is sick right now. And it's the worst part of it is not being able to, I feel like I want to continually be able to say something that's valuable, or do something that's valuable, move it in a good direction, even if the end is not good. I want to I want to keep moving in a good direction. And I got a little for the first couple of weeks she was that we were aware of it. I had a lot of I don't know if it was anxiety, I was stressed out like I couldn't, my body was under stress. And I could tell and I said to Kelly one day I was like I said this is going to kill me before it kills my mom. So I have, like, I have to find a way. And I think that you're right, like I mean, people can say like I exercise or I read or I cry like those are all great things. But in the end, it's the letting go. And it's not it's not giving up. It's it's not holding yourself responsible for something that you can't be in control of that sound right

Cheryl 1:14:13
now, and that's that's exactly that's exactly how it is. And that's where my anxiety or my my moments come from is when I can't control it. But then you just have to realize that as much as you want to control something you cannot there's nothing you can do. And you know, I can try to say, okay, he was doing this when they see your happened and like one of them we had lost the we had to put one of his dogs down and he had a really bad seizure afterwards. And I'm like, okay, so does that equal, you know, huge emotional impact is going to equal a seizure. Now, I don't know, but I kind of, you know, put that in the back of my thought. So I try to control as much as I can. But at the end of the day, there's nothing I can control. All I can do is gather data for seizures. I cannot control them and that's very, very hard.

Scott Benner 1:15:07
You have to resolve yourself to that factor or if you don't, yeah, okay. All right, Cheryl, you were terrific. This was amazing. I really appreciate your time. Thank you so much.

Cheryl 1:15:20
Well, thank you so much for having me

Scott Benner 1:15:21
of course a huge thanks to Cheryl for coming on the show and telling us this story. Absolutely amazing. I also want to thank us Med and remind you to go to us med.com forward slash juice box or call 888-721-1514 To get your free benefits check. Get your diabetes supplies from us med thanks also to in pen from Medtronic diabetes head over to in pen today.com To learn more about the M pen and to get started. There are a ton of series inside of the podcast like the diabetes Pro Tip series and defining diabetes. You can learn more about them at juicebox podcast.com or on our Facebook page Juicebox Podcast type one diabetes