Cyrus Khambatta, PhD: Welcome to the Mastering Diabetes Audio Experience, where we teach you how to sit in the driver's seat of your diabetes health for the rest of your life. We’ll teach you how to reverse insulin resistance, achieve your ideal body weight, gain energy and get your best A1c following more than 85 years of evidence-based research in the Mastering Diabetes Program.
Robby Barbaro, MPH: Our program teaches you how to reverse prediabetes and type 2 diabetes, and how to simplify your life with type 1 diabetes by maximizing your insulin sensitivity using food as medicine.
Cyrus Khambatta, PhD: We're on a bold mission to reverse insulin resistance in 1 million people. We are glad to have you joining us.
Cyrus Khambatta, PhD: I'm very excited to be here today with Stacey Simms. Stacey, how are you?
Stacey Simms: I'm great. Thanks for having me.
Cyrus Khambatta, PhD: Fantastic, thanks for being here. So Stacey, for those of you who don't know who she is, she's the host of the award winning Podcast, “Diabetes Connections.” And she's the author of a book with a hilarious title, called “The World's Worst Diabetes Mom”, and we can go into some detail about why she refers to herself as the worst diabetes mom.
Stacey’s son was diagnosed with type 1 diabetes in 2006, one month before he turned two years old, and since she started blogging about her family's experience with type 1 diabetes, actually a few weeks after that.
Now for more than a decade, she hosted Charlotte's Morning News on WBT AM, which is the city's top rated morning news show.
Stacey has been named to Diabetes Forecast Magazine's 12 People to Know, the Charlotte Business Journal's, 40 under 40, and as one of the 50 most influential women in… How do you pronounce that? Mecklenburg County. There you go. By the Mecklenburg Time. So, she's kind of a big deal, that's what we want to say.
Stacey Simms: Although I think we need to change that 40 under 40, I may have to update the resume. We're a little past that now.
Cyrus Khambatta, PhD: Fair enough. That happened at the time. And now Diabetes Connections, her Podcast, has been awarded by the WEGO Health, Top 10 best in new show, The Podcast Awards People's Choice, Top 10 health and diabetes Forecasts Magazine top diabetes podcasts.
So, to say, if you haven't listened to Stacey's podcast, I highly recommend checking it out. She's got a lot of very interesting information, and she has personal experience, again, with her son who's living with type 1 diabetes, and we're going to be talking a lot about that today. So thanks so much for being here today. Stacey.
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Stacey Simms: You're my new publicist. Thank you so much for that wonderful introduction.
Cyrus Khambatta, PhD: I'm here for you anytime. So, let's do it a little bit of a deep dive here today, in talking about being a family member living with somebody else who has diabetes, because in the world of diabetes, it's always sort of focused on the self. People are curious about “how do I improve my own health”, and we talked directly to people who are living with diabetes, but rarely do we get an opportunity to talk to a family member who is affected by somebody living with diabetes. So, I think this is actually a perfect opportunity to really go into detail about that
Talk to us about your son and his diagnosis with type 1 diabetes, and how that sort of changed the way that you had to operate as a mom.
Stacey Simms: It's really, when you put it that way, Cyrus, it's so interesting to think about, you know, the different but parallel experiences of being a parent of a child with type 1, and being a person with type 1.
So, my son was diagnosed right before he turned 2. And I hate to say it this way, but he was like barely a person, right? When you're not even two years old. It's just this amazing time of, you know, your house is bananas anyway. And then you have a toddler diagnosed.
So, I had an older child at the same time. My daughter Leah is three years older than Benny. So I had gone through those terrible twos, are the terrible threes before, and I really thought that maybe that's all it was. But of course, it’s changes in behavior, and changes in weight, and all the classic symptoms of type 1 diabetes turned out to be type 1.
And in the way you set it up, it's interesting to think about the biggest change we've had to deal with, is going from taking care of a two year old with type 1, who you're already doing everything for anyway, and then you put diabetes on top of that, so you're doing even more. But then transitioning over all this time, my son is now 15 and a freshman in high school, and so now he's a real person. And we've had to go from that, we do everything for him, we are his caretakers in every way to slowly and over time, really handing him the reins of everything, including type 1 diabetes. He's certainly not fully independent yet. He's only 15 he’s not independent in other ways. But it's been a really interesting process of backing off, learning when it's time to let him do and let him try, and let him make mistakes. And that's been the most interesting thing over the last, gosh, 13 plus years.
Cyrus Khambatta, PhD: So, this is actually really interesting because, as a parent of a child living with type 1 diabetes, the tendency of the parent is to want to not only assist the kid, but effectively do everything for the kid. Gotta figure out what to eat, when to eat, how much to eat, when to dose, when to check your blood glucose and beyond.
So I think, correct me if I'm wrong, but as the parent, you feel obligated to make sure that you're sort of like, hovering over the kid to make sure that their health is under control.
Stacey Simms: I'll take it one step further. I used to joke that I felt like I needed to surround him in bubble wrap and keep him home. This kid's never going out. Forget the kindergarten, forget college. I've got a daughter, she can do all that. He's staying home.
Cyrus Khambatta, PhD: That's exactly right. You ever see that Seinfeld episode with bubble boy?
Stacey Simms: Yes. Exactly, we joke about that.
Cyrus Khambatta, PhD: There it is.
Stacey Simms: You know, that's no way for anybody to live. And my parenting philosophy, even before diabetes was always like, I want my kids to grow up and leave, you want them to be independent, you want them to be confident, resilient.
So, we were really fortunate in a way, and I don't know if you've had this experience too, but he was diagnosed before social media. It's hard to remember, 2006 was pre iPhone even, pre Facebook, except for college students. And we can talk later about how much social media has changed things. But when Benny was little, we got to make these decisions by talking to real people and seeing real experiences. And everybody who I talked to, I was so lucky Cyrus, because my first main contacts were adults with type 1.
I was working at a radio station, and we didn't have the kind of show where we could announce and talk about our personal life a ton. It was a new news, as you mentioned, news talk that kind of thing. But we did explain my absence and explain that my son had been diagnosed.
And I got letters, and emails, but mostly letters because this was back in the day, from adults with type 1 who said, “I am a I'm a firefighter”, “I'm a banker”, “I'm a police officer”, you know, blah, blah, blah, “I have type one. And I'm successful because my parents didn't hold me back. Don't hold your son back. Type 1 is hard. Let him live his life anyway.”
And it was such an eye opening, and I was so lucky. What a great experience to have. So I started thinking, “Okay, we're going to get this kid on his own two feet, he's going to be confident”, we put him right back in daycare. We were very fortunate. I mean, I worked full time, my husband worked full time. We were so fortunate to have a daycare who worked with us.
And then we thought, “All right, by the time he goes to kindergarten, he's got to be super independent”, with supervision, right? You can't have a kid dosing himself with him. He's five years old, he can barely tie his shoes, so you gotta make sure somebody is watching him. But we would do things like, “All right! In kindergarten, you're going to check your blood sugar and use your pumps by yourself. Your teacher will watch you, or your nurse will watch you, but you're going to be the one doing it.” And then we kind of went from there. And every year, especially in elementary school, it’s goal oriented. And it really helped, because by fifth grade I could send him off on, not only sleep overs, but he went on the overnight, two night field trip to DC without us. I didn't sleep, but he went without us, and he did great. So I always had an eye on independence. And frankly, it wasn't until I got in social media, I learned I had been doing it all wrong.
Cyrus Khambatta, PhD: Okay. So, let's go to what that means, when you say you got into social media. Is that because you saw other parents that were taking the exact opposite approach as you, and sort of being more involved, and being more of a like a micromanager?
Stacey Simms: Yeah, I mean, I'm kind of joking and exaggerating. Most parents, regardless of chronic health conditions, we're all just doing our best. Everybody thinks that “we're terrible parents”, and we all have incredibly high standards for ourselves.
But I did find that once I found Facebook, and closed Facebook groups, that there was really a lot of judgment and fear over things like letting your child be more independent. Now, there's a lot of people who certainly agree with that, and would say, “Yes, I'm doing this. Sure, I still worry, but you got to let them live.” And it was interesting because it was almost as though people who'd had children diagnosed before modern technology, you know, CGN or even insulin pumps, they seemed more receptive to letting their kids go off and do things.
It's people who are diagnosed and then given a CGM in the hospital that sometimes are much more protective, because they can see everything, right? And I did find that say that, “Hey, I sent my kid on this field trip”, and people would say, “I could never do that. How could you do that?” What a terrible thing.” And I'm not kidding. I had an exchange with a guy who told me… I don't know why I engage with him, someone says something nasty on social media, you should walk away, but I didn't. And he said, “You're going to kill your child.” And I thought to myself, “I must be the world's worst diabetes mom.” And that's when I finally walked away from the conversation, but that became the name of my book because it really kind of summed me up.
Cyrus Khambatta, PhD: I see what you’re saying. Okay.
Stacey Simms: Yeah. I mean, there's a lot of parents who feel the same way I do, because I think when we hear from people with type 1, like yourself, who are living, happy, productive, thriving lives, we see that it can be done, and then we think about how we're going to get kids there. But I think there's so much fear out there, that even the most well-meaning parent who doesn't want to helicopter. I mean, really, who wants to do that? But they feel like they must do it, because they're so fearful. So, I'm not trying to be obnoxious and judgmental. It's just an eye opening experience when you think about the “whys” behind it.
Cyrus Khambatta, PhD: Yeah. And it's actually fundamentally different when you're dealing with a child who's living with diabetes, for whom you are responsible for, versus having another family member, who's an adult, who you technically aren't responsible for, because they're responsible for themselves as an independent human being. However, I think there's a lot of people who do have a family member that they want to help, and they sort of adopt a little bit of a caretaker attitude towards their family member.
And in some situations the family member’s like “Great, cool, thanks. I appreciate your help, and I appreciate your concern.” But I think in some situations also the family member can be like, “Wait a minute, hold on. You're hovering over me. You're acting like a helicopter and I don't want this, and I don't need it, and I didn't ask for it.”
Stacey Simms: Well, you know, if I could say something about that. I think, if that's the situation, then it can be just a conversation, right? If you're 32, and I don't know about you, my mom still worries about me, right? I don't have diabetes, but she worries about me. But you can sit down, if you're 32 years old, and you're home for Thanksgiving, and your mom is like “What are you eating? What are bolusing? Are you okay?” Hey, let's have a conversation after the meal, and let's talk about this, and say “Look, how can we best get to a place where you worry less? I live independently more. What do you need from me? What do we do?”
And then it may be as simple as “Hey, once week, can you check in with me”, or “Every once in a while, it'd be interesting for me to understand your diabetes technology”, or “I'd like you to share your CGM data, but I want to hear why you don't want to do that.” And just have a conversation about it.
Now, I know everybody's not in a family where that's kind of, you know, rose colored glasses. Some people barely speak or you know, it's very difficult, but I think just acknowledging that “Why do you need this? Is it because you're trying to control me?” Probably not. It's probably because you're worried, and you know nothing about diabetes, or “Please educate me. I know I said you can't eat that, so I made you this special and disgusting sugar free cherry pie.” Right? “I love you. So, I made you this gross pie. Can you tell me what I should do better next year? Because I just love you and I want you to be happy.”
Cyrus Khambatta, PhD: Can we make t-shirts that say that? “I love you, so I made you this gross pie”? It’s brilliant.
Stacey Simms: Isn't that what it all boils down to? And someone like yourself who may have a certain way of eating, or things that are important to them, it's important for the people around you to understand that, so they can respect and love you for it.
And I think it's so difficult to not talk about these things. I'm so lucky that my son and I have a relationship. We still remember, in elementary school we had different goals for every year. We would talk at the beginning of every school year, and I say to him, “What do you want me to do? How can I help you?” And he decides, “Okay, I want you to text to me at lunch, so that I don't forget to give myself insulin.” Or, “You may not text me unless I'm “this” blood sugar for “this” long.” You know?
I leave him alone. I definitely… I mean, he would laugh if he walked in and heard me say that, he would go, “You don't leave me alone. Did you bolus, did you check, what's your number?” Which is true, but we do have rules, because we've had a discussion about when I can do that. And I think that's important.
Cyrus Khambatta, PhD: You know, it actually reminds me, when I was first diagnosed with type 1 diabetes, I was 22. So I was definitely an adult at that point, even though maybe I didn't behave like one. And in the first year of my diagnosis, checking my blood glucose and injecting insulin was new, both to me as well as to everybody else around me.
So, if I went out to dinner with friends, and I would check my blood glucose, or inject insulin, it naturally just brought up a conversation about like, “Oh, well, how's things going? What's your blood glucose?” Like, “What's your sugar at right now?” And I started to realize that people were coming at it, because they were very curious, and they actually just wanted to learn about what my life with type 1 diabetes was like, and how I was able to manage my blood glucose. And then in addition to that, they also just want to understand like, what the heck is diabetes, I don't even fully understand it.
But the way that I interpreted their questioning, it was just annoying. And I knew they weren't trying to be annoying. I fully understood that. But if I check my blood glucose and I have to make a decision about how much insulin to give myself in preparation for dinner, and then a family member turns to me and says, “Hey, what's your blood sugar?” Even if I gave them a number, it wouldn't matter. It doesn't mean anything to them, right? I could say 750, and they wouldn't understand.
Stacey Simms: “Is that good?”
Cyrus Khambatta, PhD: Exactly. So, effectively, giving the answer is irrelevant as far as I was concerned. So, it got to a point where I decided, when people would ask me “What's your blood sugar? What's your blood glucose?” And I would just say them, “You know what? It doesn't really matter. It doesn't really matter. I got this under control, and I appreciate your curiosity. But don't worry, everything's cool.”
But it took some time and some confidence to get to that point where I could say those words, because prior to that, I didn't have things under control. And it would be helpful to talk about it.
Stacey Simms: And we have to be honest, even if you have the conversation, there's always going to be those people who, even if they're well-meaning, they make you uncomfortable. So, you do have to have the autonomy and the confidence, as you said, to decide “this is what I'm sharing”, right? I'm just going to say, “Hey, thanks for asking, it's good.”
And there's always going to be that person who's like, “No, I really want to know. Show me your meter”, you have to set the boundaries. And that's so hard. And that's just one reason why my heart goes out to people with type 1, not only because of everything you have to do, it's because of all the other stuff, right? It's all that other stuff that you have to deal with.
I know a lot of people who, they'll go out to dinner, but they won't even dose or talk about it in front of their friends because they don't want that hassle. So, I know I'm trying to give advice and then talk about parenting, but at the same time, it is very difficult and I hope I'm not sounding like it's not.
Cyrus Khambatta, PhD: No, no, no, no. I think this is actually really helpful for many people. I'm constantly approached by people who say, hey, Cyrus, my son, my daughter, just got diagnosed with type 1 diabetes in the last two months, in the last three months. I need some serious help, help me, right?
And I know that in that situation, I remember what it was like to be diagnosed myself, but I can only imagine that as a parent of a child that just got recently diagnosed, you're in fight or flight mechanism, right? You don't know what the heck you're supposed to do. All of a sudden, you have to learn this new language, this whole new system, and you have to take responsibility for a younger child, and make sure that their health is under control.
So, if somebody approaches you and says, “Hey, Stacey, my son was just diagnosed with type 1 diabetes, and he's four years old. I need your help. What should I do?” What advice could you give to somebody who's in that emotionally vulnerable state, right after diagnosis?
Stacey Simms: Sure. My advice would not be about diet, or tools, or tech. My advice would be, “This is going to be really difficult”, right? “Diabetes is very hard, but your life and your child's life is going to be great. Only if you as the parent decide that it's going to be great.”
We set the tone. “So, you have a really hard decision to make. You can decide…” And it also depends on your child's age, right? Because there's age appropriate reactions for every different age. The way I talked to my two year old about diabetes would never be the way I would talk to a newly diagnosed 12 year old, right?
But you have to decide as a parent, how are we going to handle this as a family? And to me it was all about, “This is a problem. How are we going to handle it? How are we going to talk about it? And how are we going to move forward?” It was all about avoiding fear, being realistic, avoiding garbage information, using scientific studies looking at real information, talking to health care providers, talking to experienced people with diabetes.
I mean, I get accused of “rose colored glasses” a lot, “You’re not super positive, fake stuff.” Because I never liked that whole “Diabetes can't stop us. We're gonna go on forever, it's gonna be…” Diabetes will stop you sometimes, especially if you're a little kid, and you want to try a different sport every year, because, I love my son, but he wants to do a different sport every year.
We get soccer figured, he goes into baseball, we get baseball figured, he’d go into basketball. He did wrestling this year, and it was crazy. And that's a whole new set of education to go through. So acknowledging that diabetes stinks, diabetes can stop you, but deciding, I'm not gonna let my child see this at a very young age, I'm not gonna let them see me cry, I'm not gonna let him see me… You know, this is gonna sound terrible, but coddle him for shots or finger sticks, this is our new routines, we're gonna move forward, and make it part of your regular life.
My mother wanted to give my son rewards every time we checked his blood sugar, you know? “Oh, great job, here's a prize.” And I was like, “Look, we have to do this a billion times. We can't get him a pony for every fingerstick, it has to be part of his life.”
Now, if you have an older child, I think the conversation will be different, right? You have a 12 year old, you still want to be positive about it, but you want to be realistic, in that, sure, diabetes can slow you down, but now we have to decide together. It's not going to be a terrible thing, it's not going to stop you from living your dreams of XYZ. And I think for this generation, it's easier than for past generations, because the health outcomes are different, right? I mean, we have a long way to go.
But you know, this people were told as late as the 1990s, “Oh, drop out of college, you're not going to do the career you want, you're not going to live to 30, you're going to go blind, you're gonna…” To the parents, “Oh sorry, do the best you can but there's no hope.” They really were told those things. And so, my kid has role models of people who have really told their doctors, “I'm going to show you, forget this”, and who have done incredible things.
I mean, you're a great example of that, too. And I think that when we have people to look at like that, and we choose to follow those examples, to me, that's the, I know it’s long winded, that's the advice, right? It's not tried this pump, or do this thing. It's, “Hey, decide mentally, that this is going to be difficult, but we're going to take it on, we're going to be in it together and we're going to live the best life that we can.”
Cyrus Khambatta, PhD: I love everything that you just said there. I really do. Because what it forces you to do is make a decision before you become reactive.
Stacey Simms: Yeah, good point.
Cyrus Khambatta, PhD: I think part of the problem is that type 1 diabetes is, we call it a “problem”, it's an issue, and then the reaction to that is like fight or flight mechanism. I'm stressed on, I'm confused, I'm frustrated, I'm angry, I don't know what to do. And then as a result of that, that can almost become your identity to a certain extent. It can become your identity, and again, if you're the parent, it can also become your identity on behalf of your child.
But what you're saying is like, “No, no, no. You're going to define exactly how this whole thing is going to go beforehand.” And you're going to say, "You know what? I'm not going to let this define us. We're going to have a phenomenal experience. It's going to be a learning process all along the way. But we're going to do this together and we're going to make it awesome.” And that's so valuable, and I love that you just said that.
Stacey Simms: Well, thank you. So let me throw something your way that I don't think you're gonna like as much, we'll see how it goes. And that is, along with all of that, I think as parents, we have to be very careful about numbers. Can we talk about numbers for a little while?
Cyrus Khambatta, PhD: Let's talk about numbers, please.
Stacey Simms: Okay. So with the, let's set this up right, with the caveat that, of course, numbers are important, we want our children, and adults with type 1 to be in a healthy range, right? I'm not talking about being out of range all the time, or A1cs of 10, or anything like that. But in that philosophy that I have, it's also about making sure you remember you are raising a child and not a number. And that means letting your child try a new sport, knowing that their numbers are going to go up and down. Letting your child have an experience, maybe it's a school across town, or a bus ride that you were worried about, or playing at a friend's house and the mom keeps doughnuts on the counter, or something, right? That happens. But having life experiences where they're not going to be at a steady 85 all day on the CGM.
And understanding that, working with your endocrinologist, talking to your health care providers about what's a safe range for my child. I just really worry that we are so concerned, and I see this all the time on social media, if my kid’s A1c is in 6.2 I'm doing something terrible as a parent.
I always ask, “Is your kid happy? Do they talk to you? Are they getting good grades at school? Are they playing a sport, or being in the theater? Are they excited about something?” A1cs go up and down. Teenagers have terrible A1cs historically, but are you giving them the skills for when they kind of come back to Earth, that they can take that over? And I think that's just as important as anything else we've talked about. So, you can go ahead and beat me up now, Cyrus.
Cyrus Khambatta, PhD: No, no, no. I think this is a good idea. You're right. Because even as adults with type 1 diabetes, sometimes I find myself too concerned about the numbers, and I try and remove myself one level and say, “You know what? The numbers are important, okay. But there's this other thing called quality of life that also matters”, right? And no matter how hard I try, no matter how hard anybody else tries, you're never going to get your blood glucose control in range 100% of the time, so stop trying.
Stacey Simms: I would say that people who may not have listened to you for too long, or only know you guys from like a picture or two on the internet, will be surprised to hear you say that. I think that's fantastic.
Cyrus Khambatta, PhD: Okay, cool. I'm actually glad to hear that, I mean, here's the thing, I'm human. And I strive to get the best blood glucose control that I can get, and sometimes my blood glucose control is worse than I want it to be, and then I will work hard to try and make it better, right?
Stacey Simms: Yeah.
Cyrus Khambatta, PhD: With these CGM devices, I went and I got a CGM for about a month or so, this was a couple years ago, strapped it on to myself and I started looking at the numbers that was providing me. And within the first few days of using it, I started to realize that I was becoming a little bit obsessive. I didn't want to be, but because I was getting information every 5, 10 minutes, it gave me more insight into numbers, which I didn't actually care about and wasn't asking for, and as a result of that, it literally felt like I was watching the stock market on a five minute basis.
After like a week of living with this, I literally took off the sensor and I put the whole thing in a box and I was like, “Stop. I don't want this information, it is too much.” And I went back to my sort of old school finger picking and checking 7, 8, 10 times a day, which is a system that works for me.
The reason I'm bringing this up is because in today's modern society, a lot of people are looking for quicker information, more instantaneous information, and more information in general, which is what something like a CGM can provide you with. And if you want that information, okay, cool, go for it. But just like you're saying, if it's sacrificing your quality of life, and you're not enjoying your experience as a human being, or you find yourself preoccupied with diabetes unnecessarily and you don't want to be, then it might be worth taking a step backwards and saying, “Well, what am I doing to myself? Does this even work?”
Stacey Simms: Absolutely. You know, because we're supposed to be using these tools, and this modern technology to thrive with diabetes. So, if you start using a piece of technology, and it's not working for you, as in your experience, I think there are a lot of great reasons to stay with CGM, but that's my experience. I know a lot of people who live great lives without it and are doing just fine. And I think, again, it's supposed to help us live better. So, if the CGM is giving you as a parent, more fear about your child, that's just really something that I think does happen, because you see everything all at once. There are ways, I think, to kind of ease into it. But that's another thing to talk to your healthcare provider about. If you've suddenly, you put this device on, it's not working for you, give yourself permission to look away.
Cyrus Khambatta, PhD: Fully agree with you. I think it’s sage-like advice.
Stacey Simms: It’s hard though, it's really hard. I just checked my son's numbers because I have the remote, like we share. So of course, as I we were talking, I was like, “Let me just look and see.” And you know, I could look a billion times a day. I actively moved to my second page on my phone, my second page of apps.
Cyrus Khambatta, PhD: Smart.
Stacey Simms: Yeah. I try to raise the alarm at certain times if I know it's going to be a crazy day, or I'm busy, I just I really try to do that for him, so I don't look at it all the time. I have lots of tips and tricks about using it. I still probably check it more than I would like to.
Cyrus Khambatta, PhD: Okay, so how many times per day do you check your son’ blood glucose?
Stacey Simms: 5027! Now, I really… You know, it's a great question. Here's a little bit of insight I will give you, I don't know the answer to that. It's a lot. I pick up my phone all day long. I'm one of those people anyway.
But about two weeks ago, I had a very odd experience. I got up, I made my coffee. I usually sit by myself for about 20 minutes before my house gets busy. And then, when I got up from this 20 minutes, I realized I hadn't checked his number on my phone at all, which was the first time in a long time, I remember. I usually get up and I look at it. It was so strange. I was like, “That's good. You should try that every day.” So I'm trying to more. But it's gotta be, I mean, I don't know how many times a day, I'll have to check.
Cyrus Khambatta, PhD: Give me an estimate. 50, 100?
Stacey Simms: Yeah, I think 50 is a really good estimate.
Cyrus Khambatta, PhD: 50?
Stacey Simms: Yeah.
Cyrus Khambatta, PhD: Okay. So, if we do 50, and you're awake for approximately 16 hours, let’s do the math, 50…
Stacey Simms: I take it back, I take it back. Let's say like 20. 20 to 25. There are days when I would probably, I would leave it open sometimes if he's had an issue, or we're talking, but let's say 20. That seems a lot more realistic for the time I'm awake.
Cyrus Khambatta, PhD: Okay, fair enough. So, you're monitoring your son's blood glucose 20 times a day. Me, living with type 1 diabetes monitors, monitor my blood glucose between 8 to 12 times a day, depending on the day. And that's what I found to be a good equilibrium for myself. 20 seems to be a good equilibrium for you, although it sounds like you're saying 20 is still too much.
Stacey Simms: Well, you have to keep in mind Cyrus, I'm not I'm not doing anything about it. I'm just looking. I don't tell him. He probably checks it when it goes off, or when he eats. He doesn't look at it all day long. He's probably checking it a lot less, and I don't text him. So, there are days where we don't talk about blood sugar at all, I'm just looking.
You've given me so much to think about here. I'll get back to you. I'll write something up or whatever when we think about it a little bit more. But I think that 10 times a day is where we were when he was younger, especially if you're a caregiver, right? If you're giving insulin, so I would probably be checking it at least this much, if not more, if he were home with me still, right?
I mean, I remember when he was younger, we had set times before CGM. We would say, especially at school, we're going to check it this time, this time, this time, and this time, and he would do that at school without us. So, if you're the person taking action, then I think that makes a lot of sense, but for somebody like me looking at that… I don't need to look at the phone 20 times. That's ridiculous.
Cyrus Khambatta, PhD: Right, right. I mean, I would almost challenge you… I'm just thinking out loud here, because…
Stacey Simms: Yeah, I think you're right.
Cyrus Khambatta, PhD: You know, let's draw an analogy, your iPhone, okay? Lots of people are using their cell phones all day long every day. I have some friends that use Instagram all the time. And when I hang out with them, what I noticed is that they have their phone either physically in their hand, like 90% of the time, or it's within like arm's distance of them at all times. And I will admit that that happens to me a lot of the times as well.
But the difference here is that because they play Instagram, and they do that frequently, you know, I asked a couple of them, I said, “Hey, how many times a day do you check Instagram? Be honest.” And for some of these people, they were like, “I'm embarrassed to admit, I think the number is somewhere between 150 and 200 times a day.”
Okay, so imagine picking up your phone 150 to 200 times a day, I almost guarantee you that you pick up your phone 150 to 250 times a day, you might not be playing Instagram, but at least you're sort of like accessing that device to get information, right?
Stacey Simms: I like how you call it “playing” Instagram.
Cyrus Khambatta, PhD: That's what it is, right? So, I do the same thing. I check my phone all the time for text messages, for emails, you name it, a whole bunch of stuff. And it's just become, in our society, it's become very habitual to…
Stacey Simms: Oh, it's terrible. Yeah.
Cyrus Khambatta, PhD: To be reliant on these devices for all types of information, and diabetes is in many cases not inseparable from your device because your numbers are on your device, or the device in some way aids your ability to understand what's happening with your health, right?
So I think the take home message here is for each individual to say, “Okay, wait a minute, how much do I actually want to be taking a look at my numbers? And how much do I actually look at my numbers?” And if there's an imbalance between the two of those, then be honest with yourself and maybe try and find a better balance.
Stacey Simms: Yeah. No, I don't disagree with that at all. It's one of those things where, until you talk it out, you don’t realize.
Cyrus Khambatta, PhD: It’s exactly right. And then, I would almost argue the opposite is true for people living with type 2 diabetes, because there's many people that we interact with, and we asked them, “When was the last time you checked your blood glucose? What was your glucose this morning?” And they say, “I don't know.”
Stacey Simms: Yeah.
Cyrus Khambatta, PhD: “When did you check your blood glucose last?”, “I don't know. I checked it last week, once.” And I was like, “Wait a minute, hold on a second, hold on a second. You're living with type 2 diabetes, you're making lifestyle changes, you're trying to improve your health, and if you're not checking your blood glucose enough, then that's the flip side of this conversation”, right?
So then, there's an imbalance of not paying attention enough, and then… What I would recommend in that situation is to check your blood glucose 1, to 2, to 3 times a day, so that you at least have some information and can act on that information.
Stacey Simms: Why is it so hard in everything to find a happy medium? Are we as humans incapable of moderation? Maybe that’s the takeaway.
Cyrus Khambatta, PhD: Oh, it is so true in so many ways, in so many ways.
Stacey Simms: Oh, my goodness.
Cyrus Khambatta, PhD: Speaking of moderation, you also have talked openly about the way that parents display their kids’ information on social media. So, let's go into a little bit of detail here about, what is happening on social media these days, and why you find that there's a little bit of a problem with the way that children's health information is being spread around?
Stacey Simms: So, you have you heard the term “sharents”, like parents who share “sharents.”
Cyrus Khambatta, PhD: I have now.
Stacey Simms: I just heard that last week, and I thought “That is perfect!” perfect for this. So, as parents, one of the things that's happened as social media has come into our lives more and more, as we all play Instagram more and more, and we're also picture oriented, is that we are sharing so much about our children in ways that just didn't exist years ago. I mean, even when my kids were little, this was not around, and I'm so grateful. Although sometimes I get really jealous of like, “I want to post that cute picture of my kid when he was three years old, and I didn't get to, because it didn't exist. There was no place to put it.”
But in that sharing of pictures, two things have happened. One, a lot of parents share photos of their children, I call it photos of children in distress, right? They're sharing a picture of their child in the hospital, sick. This isn't just with diabetes. They're showing their children unhappy, unwell. And it comes from a place of need, right? We want sympathy. We want empathy. We're asking for help, perhaps, or just “Oh, my goodness, it was a rough night, look at this.”
But the problem is it has a real effect on children. There are privacy concerns, there are long term embarrassment concerns. There's so much, and I did an episode on this, and I was quoting a lot of health professionals who are really appalled at this.
And then the other part of it, which I think is almost more prevalent and more important, is a lot of parents with children with type 1, share specific numbers, and this goes beyond a quick CGM graph that they take a picture of and post. They share A1cs every single visit. And while that seems kind of innocuous, and I understand why people do it, you know, “Hey, this was a really tough visit. We were hoping for a lower number, we got a higher number”, or “This happened. Why do you think?”, or “Oh my God, I'm so excited. We finally got below this number we've been…” And listen to me, I want even give specifics because I've trained myself (inaudible). I'm laughing, but you know what I mean?
Cyrus Khambatta, PhD: Yeah.
Stacey Simms: And what they're doing is, first of all, that's not their information, that's the kids’ information to share.
Cyrus Khambatta, PhD: Very good point.
Stacey Simms: It's just one of those things to me, and I did for years, when Benny was about seven. This was pointed out to me by Moira McCarthy, who's a well-known author, and blogger, and advocate, and a good friend of mine, and she private messaged me, and we had this discussion, and since then, I've really educated myself about it.
And what you're doing is you're leaving a breadcrumb trail of your child's health information on the internet. We don’t this with other conditions. Nobody posts their blood pressure, or their cholesterol readings, or their weight. I mean, weight is different, people do if they're losing weight, they will post about it. But most people don't post their child's health information like that online. And for some reason with diabetes, we feel like it's okay.
And you know, there are some times when I get it. Once in a while, although I would never… I don't disclose the specific numbers ever. But if you have a hard question, like a child's going into puberty, and maybe the parent doesn't realize, and suddenly they have a big jump in A1c, it can be helpful to learn about that. Or if your kid has really not been paying attention, it has been burned out, and it's going through some really hard stuff, and then kind of comes back and you want to post and celebrate. I understand why that happens.
I know a lot of adults also post their A1cs or show graphs a lot, but I mean, that's different. They're consenting adults. I don't know if you see this, I know you deal mostly with adults, but to me, I think it's a huge problem.
Cyrus Khambatta, PhD: Oh, I fully agree with you. I'm so glad you're talking about this actually, because personally, I don't participate in social media very much because I don't really like it. I find that it's just a little too… I don't know, it can be invasive.
But I do see what the sharents are doing, and sometimes I look at it and I'm like, “Wow.” I just don't know how to fully verbalize what I have felt in the past, but exactly what you just said. I mean, you literally encapsulated exactly my thoughts. Which is, you know, you wouldn't share other vital information about your child's history, but somehow it's okay to post their blood glucose values. Did you ask them? Are they cool with it? Do they even know if they're cool with it?
Stacey Simms: Right, right, right. You could ask, I’ll ask my eight year old. An eight year old kid can’t give consent to put privacy information online
Cyrus Khambatta, PhD: Exactly.
Stacey Simms: Right. I mean, there's a reason why we don't let children make those decisions anyway. And I just want to be clear, I know you know, but maybe as you're listening here, we’re not trying to shame parents here. This comes from a place of need, right? We're so stressed out. We're looking for empathy. We're looking for understanding. It's not a question of people not doing right by their kids, and they're bad parents. I think parents can't win, right? There's just no perfection in parenting, we have no idea if what we're doing is making sense. There's no finish line.
And we're all trying to do the best we can, and I think a lot of these, what I'm calling “mistakes” which I'll put in quotes, they come from… It’s not a place of meanness, or you know, lack of discipline, it comes from a place of fear and really looking for empathy. And when you as a parent, start thinking about it from that point of view, if you just take a moment to think things through, and before you press “post”, or “send”, or whatever, it may change your perspective. So, give yourself 15 extra seconds before you post. It'll change your life.
Cyrus Khambatta, PhD: For sure, it will absolutely change your life. No question, no question. So, what advice would you give them? I mean, there's so many ways to think about this, actually, because, you know, we've covered a lot of topics here, which is, as a parent living with a child who's newly diagnosed with type 1 diabetes, how can you interact with them in a way that feels comfortable for you, and for them, in the short term and in the long term? How can you give them the freedom that they're looking for, but also help them, and have a conversation with them about their health, and about what their glucose means, and how they can take full control of it?
Stacey Simms: Yeah.
Cyrus Khambatta, PhD: And then, it's almost like this Podcast is really about educating a parent about sort of the boundaries of their responsibility as a caretaker, right? Because there's certain boundaries that a parent would want to instill, about monitoring their child's health. And there’s certain boundaries they want to instill over sharing that information with other people. And it can be dicey, because some parents don't think about it, sometimes they don’t know, and just like you're saying, parents, they're just trying to be good humans. It's just that simple. But in the process, I think it can create problems for the child living with type 1 diabetes, who doesn't really understand necessarily everything that's going on.
Stacey Simms: Yeah. And I think that parenting with a child with diabetes is hard, because parenting is hard, right? We all parent differently. So to come into a community where someone like me, you might hear me, “This is the way to do it”, that's not my intent at all. We all parent differently.
So, when you're making decisions about diabetes, why would you think that… Not you, Cyrus, but why would one think that they would all be the same? We parent differently, we really have different values sometimes. What we may think is important is different from family to family. So, I think it's important sometimes to step back from diabetes and think, “Is what I'm talking about here in line with my values as a parent overall? Would I make this decision differently if diabetes wasn't involved?” Because you really want to make sure that… Especially if you have multiple children, right? I have a daughter without type 1. How can I let her go off and do these things, and not let my son go off and do these things, right? Or, on the flip side, how can I punish her for something that I wouldn't punish him for?
So I think we really have to take a step back and say, “Okay, I'm parenting this way, because these are my values, and then I'm adding diabetes in. But I still want to be the parent that I want to be.” And then you can decide those boundaries. I think everything follows from that, if that makes sense.
Cyrus Khambatta, PhD: Yeah, that's great. I actually really liked this conversation because I hadn't really fully verbalized everything that we brought up in this conversation. But I think it's really, really, really important for parents to sort of think about many of these aspects of their responsibility, as well as their child's overall health, and the child's interaction with their own disease.
Stacey Simms: It’s not easy.
Cyrus Khambatta, PhD: No, it's not easy at all. And one last thing that I'll add to this conversation here, is that a lot of times it's easy to view type 1 diabetes, or any diagnosis with diabetes, as being like a life sentence, “Oh, my God. I gotta live with his diabetes thing. Oh, my God, my hopes and dreams are going to be crushed. I'm going to lose 10 years of my life.” And Whoa, is me, right? It's very easy to become a victim, both for the person living with diabetes and for their family members, right? I mean, you've probably fallen victim to that victim mentality. I certainly have.
Stacey Simms: I think we all do sometimes. You have to let yourself have a pity party here and there. But I go back to what I said, a long time ago in this interview, I decided to look for the scientific evidence. I decided to talk to my health care providers. I decided not to listen to fear mongers, who didn't know what they were talking about.
So, while it can be very isolating, and very frightening, and that fear, and that pity kind of creeps in like, “Why do I have to schlep all this stuff from a parenting point of view. I was done with the diaper bag, Cyrus. I was done! And then I had to schlep diabetes stuff everywhere. Poor me.”
I had to always take more precautions. If I found a babysitter, if I was lucky enough, it had to be a grown-up, who knew more, I had to pay more until my child was old enough to be self-sufficient. So, these are the different things that the parent thinks about. Of course, we think about health and lifespan and all of that. But you have to seek out the information, and I don't know about you, but almost all the studies I see, show that with good care, with good access, I mean, these are challenges for our community, let's face it. With those things, good education, and good control, you're going to live the life you were meant to live. It's not gloom and doom. But you do have to have those things in your favor.
Cyrus Khambatta, PhD: No question. No question at all. Stacey, tell people how they can find out more about you and how they can become a super fan of you.
Stacey Simms: A super fan? Well, I'm really easy to find, so it is StaceySimms.com. The Podcast is “Diabetes Connections”, wherever you get your podcasts, if you're already listening to this one, I'm sure it's probably recommending mine on the same app. And then the book is “The World's Worst Diabetes Mom”, and the easiest place to get that is on Amazon.
I just have to ask you, Cyrus. I talked to Robby recently, and you guys were just about to take your audio book, which I had done as well. Was that fun, did you have a good time?
Cyrus Khambatta, PhD: Yeah, taping the audiobook was actually very fun for a couple of reasons. The studio that we went down to in LA, was run by two guys named Jerry and Michael. And the two of these guys were just gems. I mean, these guys are true pros. And they made the experience really fun for us.
But other than that, you know, when you're actually in the recording studio, and you're reading your own book, it's like, the words have an ability to jump off of the piece of paper, and you can really put some emotion behind it, and change the inflection of your voice, and really convey the point that you're trying to argue in a way that it's hard to communicate on a piece of paper. Especially for someone like you, you have plenty of emotion in your voice, and I love… As you're talking, I'm getting excited about so many different things. So, I think it would be an awesome opportunity if you have that chance.
Stacey Simms: Well I did it. Yeah, I did my audio book too, and it was so much fun.
Cyrus Khambatta, PhD: Oh, you did?
Stacey Simms: I did it, yeah. I was curious what your experience was like, because I liked it almost more than writing the book. It was really fun to read. I'm glad you had a great experience too.
Cyrus Khambatta, PhD: Yeah, that's great. How long did it take you to read your entire book?
Stacey Simms: Oh, gosh, I did it... I have a home studio, so I actually did it myself.
Cyrus Khambatta, PhD: Oh, wow.
Stacey Simms: So yeah, I did it over about six weeks. I really had to divvy it up, because I'm busy, man. I got a lot going on over here. I gotta do laundry in the middle of things. I can't be, you know, it probably would have taken me two weeks if I had been by myself. My family, you know, gotta feed them all.
Cyrus Khambatta, PhD: That's great. That's great. I'm glad you did it. So, for all the listeners there, if you want to become a super fan of Stacey just like we are, visit her online, Diabetes-Connections.com, or StaceySimms.com, or look her up on Amazon, and you can get more of her genius in many of those locations.
Stacey, thanks so much for being here today. Pleasure, pleasure, pleasure talking with you.
Stacey Simms: It was an absolute pleasure. Thank you so much.
Cyrus Khambatta, PhD: Thanks for listening to the Mastering Diabetes Audio Experience, we're very happy that you're making the commitment to learn more, and open your mind to a world of diabetes management and reversal that has truly taken the world by storm.
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