#212 – Managing Type 1 diabetes and thriving with it | Jesse Lavine & Ben Grynol
Receiving a diagnosis of a chronic condition, such as Type 1 diabetes, can be life-changing. A diagnosis is helpful for understanding the cause of symptoms and how to treat, but managing a chronic condition can take a toll on mental health. Tools like a continuous glucose monitor can help empower people and ease the burden of constant care. Jesse Lavine and Ben Grynol discuss the challenges of managing Type 1 diabetes, how Lavine’s diagnosis with Type 1 impacted him, how CGM helped Lavine not only manage the condition but also thrive with it, and how the medical system needs to change to help patients dial in optimal instead of just adequate health.
- Jesse Lavine on Instagram: https://www.instagram.com/jesse_lavine/
- Jesse Lavine on Twitter: https://twitter.com/lavine_jesse/
- Jesse Lavine on LinkedIn: https://www.linkedin.com/in/jesse-lavine/
3:39 — A diagnosis of Type 1 diabetes
Jesse Lavine, operations specialist at Levels, shares his story of being diagnosed with Type 1 diabetes as a child.
The date was January 23, 2006. I’d just turned 11 years old, and my mom took me to my primary care physician, who was obviously a pediatric care physician at the time. My mom had been noticing symptoms of frequent urination and excessive thirst. I would literally go to the grocery store and pick out gallon bottles of water and put them in the shopping cart and chug them. Just insatiable thirst. After a while, my mom took me to the doctor, and they did the bloodwork and a urine test. And the doctor came back in the room and looked me straight in the eyes and told me, “Jesse, you have Type 1 diabetes. Your blood sugar is in the 500s. You should go to the hospital right now and get checked in and get insulin.” So that was pretty hard to hear.
6:28 — Getting diagnosed with a chronic condition can life-changing
Lavine talks about the moment that fully altered his world.
The endocrinologist who I had been introduced to was this dude with a fluffy mustache who sat across the room from me and with a big smile on his face—yet serious. He told me, “Jesse, you are your own doctor now. This is all on you. You’ve got to manage your diabetes.” He gave me a couple scenarios of what it would be like to potentially lose a limb or any of the other complications that Type 1 diabetes comes with. So that week in January 2006 was quite monumental, and I actually don’t really remember that much of my childhood before that point. It was that big of a memory. I feel like when I reflect on my childhood, my life started then.
14:18 — Wearing a CGM helped Lavine reduce his insulin intake
Lavine recalls extreme fatigue in college and the need to take a medical leave of absence. But then his new endocrinologist recommended a continuous glucose monitor (CGM). Lavine credits the device with changing the course of his type 1 diabetes.
What I was doing for the first nine years of my diagnosis was eating whatever I wanted as long as I took enough insulin for it. You’re basically on the same track as like any other American who is on track towards prediabetes or Type 2 diabetes. I just don’t create insulin, but I’m still using it from a vial, and the more insulin I take, the more carbs and processed foods I’m eating, the more resistant to that insulin I become. It’s just this sort of never-ending ball of yarn that keeps getting wound up. Once I finally put a CGM on and changed my foods, I literally cut my insulin intake by like 80% overnight, just by changing the foods that I’m eating. And I’m not starving myself. I’m still eating delicious, beautiful, colorful meals. But the amount of insulin that I had been taking my whole life—I had realized once I saw the data in my face from the CGM. I was like, “Oh, that’s not necessary. You don’t need to do that and feel sh*tty all the time in your day-to-day life. You can have diabetes and still function normally.” I think, another way that I conceptualize this sometimes is Type 1 diabetes is an allergy to carbs, and insulin is like your EpiPen. You can still eat carbs, but you have to account for it and have that emergency shot there waiting for you.
26:04 — Having real-time insight into how foods affect your condition and your body
Wearing a CGM empowered Lavine to maintain tighter control over his blood sugar, rather than enduring extremes.
When I took that semester off from college and when I put on a CGM for the first time, I was able to see my own data. And it’s movie-like quality. It’s like taking 10 snapshots of glucose a day and not learning anything. I have no idea what my blood sugar’s going to be when I check it except for when I feel low or super high, but those are extremes and I want to be not in the extremes. So when I put a CGM on for the first time, I was able to see that by changing my food and lifestyle, and many other factors, that I was able to have normal blood sugar… To see my blood sugars go from super wave oscillations to flat lines and to know that’ s possible was super empowering.
29:47 — Type 1 diabetes does not have to hold you back
In college, Lavine became involved in various nonprofits aimed at Type 1 diabetes awareness and funding. The nonprofit Beyond Type 1 invited him to bike across the nation as part of a 20-person team, and the event was empowering.
When I was diagnosed, I basically thought that my potential as a person or as an athlete was truncated. But I was riding my bike across the country and that felt like pretty peak potential. Nothing was holding me back, not even my Type 1. And I was using that as fuel to power my legs across those miles. And the coolest experiences were when we met kids along the way, who were like me—resentful, angry, didn’t want to deal with their diabetes, had their moms inject their shots—and they saw 20 people come through tattooed in these insulin pump devices and CGM devices. And all they could talk about after we left was how much they wanted to be involved in their care. That night at dinner, they picked up the needle and put it in their leg and they picked up CGM applicator and put it in their arm. And we got texts from their parents saying, “You’ve changed our kids’ lives.” And every time I talk about that or think about those experiences, I get chills on my face because it’s cool to be able to demonstrate that anything is possible with your Type 1 diabetes. It doesn’t have to hold you back in any way. Doesn’t matter who’s told you what you can’t do in your life. If you want to do it, I think you can do it.
35:18 — The current medical system isn’t necessarily set up to empower patients
Lavine expresses the wish that the medical system would help empower people with Type 1 to achieve their health goals.
I want someone who, in their position as a doctor, is going to empower that and help encourage that and say, “OK, cool. Here’s all the experiments you’ve done in the past. I think that if you did these couple more, then it would help you smooth out the spike that you’re having overnight, for instance. But a lot of them don’t have the bandwidth to have that type of conversation and that type of care and personalization for each person. And so in my quest to find a new endocrinologist, I’ve just been hitting my forehead against the wall. I have these goals to have normal blood sugars and have my A1C below 6. But there’s a lot of risk that doctors see with that because the lower your A1C goes, the more risk of hypoglycemia you have, which is true. But also I don’t want to pad my A1C numbers and be living with high blood sugars. Instead, I’d rather have blood sugars that are stable all the time and take out variables that cause spikes and dips. But that’s pretty hard to find. There’s also the whole other piece, where insulin and CGMs and glucometers and test strips are unaffordable to so many people. And I’ve never been in that situation. And that’s a massive privilege that I have.
37:08 — A CGM offers constant feedback that can be used to manage Type 1 diabetes
Lavine compares CGM with finger-prick glucometer checks.
I don’t think that this level of empowerment and sense of control that I have over my diabetes would’ve been possible with a regular finger glucometer. I think I would’ve had to check my sugar like 50 times a day in order to get to that level. And that interrupts life, whereas CGM doesn’t. You can just look at your phone and see where your glucose levels are.
38:13 — The benefits of having stable blood sugar
Lavine shares that having high blood sugar degrades his energy levels.
High blood sugars take a long time to recover from. My analogy is: when I wake up with a high blood sugar, it’s like I’m a 1995 Dell laptop versus a 2023 MacBook Pro when I feel good and my blood sugar’s 80 to 100.
41:25— Managing a chronic condition can lead to medical system burnout
Lavine empathizes with others who are exhausted with a litany of doctor’s appointments. But he makes health a priority as best he can.
My dad has always drilled into me that health is always a number one priority. I think that’s hard. It’s easier to say that it’s the top priority, but it’s hard to make it so. The cardiologist example is a perfect one, where obviously you should go get your heart checked out if someone tells you have an irregular heartbeat. But saying that you don’t want do that because it’s another doctor’s appointment of the many that you’ve had that year, it’s not a good reason. It’s valid. Yeah, you can be burnt out by the medical system.
44:59 — Considering the mental health aspects of managing a condition
Lavine expresses a desire for the medical system to consider the mind-body connection of chronic conditions.
I think going back to one of the frustrations of the healthcare system is that this psychosocial component of living with a chronic condition is so often glazed over… How you’re doing mentally, emotionally plays such a huge role and is so circular in the management of everything else, like how you’re managing your diabetes, how you’re performing at work, how you’re performing at school. All those things are totally intertwined, whether or not they are their own priority items.
Jesse Lavine (00:06):
I went to a diabetes summer camp one summer and I had such a fun time. Everybody there was type one, there were low stations everywhere. If you ever had a low blood sugar, there were juice boxes within a hands reach. It was a sweet weekend. There was like a paintball course, and I had such a great time when I went there. And I got in the car and I told my mom that I never wanted to go back. I think that’s just because I wanted to be normal. I didn’t want to be different for my type one and go to a diabetes camp, even though that probably was the most normal place for me.
Ben Grynol (00:32):
I’m Ben Grynol, part of the early startup team here at Levels. We’re building tech that helps people to understand their metabolic health, and along the way we have conversations with thought leaders about research backed information so you can take your health into your own hands. This is a whole new level. In this episode, we are going to switch things up a bit. We often talk with thought leaders on a whole new level. We talk about health and wellness, metabolic health, and all of these great things associated with the mission that we are on. Well, in this episode, we’re excited to share a powerful and personal story from one of our very own team members, Jesse Lavine.
Jesse is part of our research team, and Jesse grew up with type one and is very integrated into the community. So if you’re interested in hearing more of these types of stories from our team member, we often share them on our other podcast being called Inside the Company. But we decided to share this one because it’s both personal and near and dear to all of our hearts. And so here is Jesse’s story. Jesse, when he was 11 years old was diagnosed with type one. He very much had this oscillating relationship with his diagnosis. He wanted to take his health into his own hands when he was a young kid. He felt that it was not only his obligation but his interest to be able to take care of himself. As he grew up throughout his teenage years and into adulthood, his relationship very much changed.
He started to think about ways that type one maybe put him as an outsider versus an insider. All he really wanted to do as any young kid does is be accepted within a circle. You don’t want to be labeled or identified by a diagnosis. You want people to care about you for your interests, people to be friends with you for the things that you are friends with them for, having shared interests, being a kind person, meaning someone that other people want to hang around with. And so as a teenager, Jesse usually didn’t talk very much about type one. He didn’t let people know that it was something that he lived with. As he moved into adulthood, he started to lean into it a little bit more. And he got involved in different organizations, even one where he biked across the country to raise money and awareness for the type one community.
And so as an adult, Jesse continues to be very integrated into the community. And metabolic health is something that he has very direct experience with, not only wearing a CGM but learning to manage his glucose levels based on the way that they oscillate day in and day out. Jesse is a team member that is as genuine as they come, and we are so grateful to have him on our team. Anyway, no need to wait. Here’s Jesse’s story.
So we currently have two team members who are part of the T1D community, type one community. And both of you have different experiences and everyone’s got their own story with it. So thought it’d be a good opportunity to share your story and to talk through what it’s been like growing up as part of the type one community. And some of your experiences with technology like CGM and even things like healthcare, how that has transpired and how it is evolving and how you see it evolving in the future with the importance of things like tracking different biomarkers to make us all healthier. So let’s go back to the origin story. Let’s take it to Chick-fil-A.
Jesse Lavine (04:20):
Okay. The date we want is January 23rd, 2006. I had just turned 11 years old and mom took me to my primary care physician who was obviously a pediatric care physician at the time. And my mom had been noticing symptoms of frequent urination and excessive thirst. I would literally go to the grocery store and pick out gallon bottles of water, and put them in the shopping cart and chugged them, just insatiable thirst. And so after a while, my mom took me to the doctor and they did the blood work and the urine test. And the doctor came back in the room and looked me straight in the eyes and told me, “Jesse, you have type one diabetes. Your blood sugar is in the 500s. You should go to the hospital right now and get checked in and get insulin.” So that was pretty hard to hear mostly because I had some context for what type one was.
There was a girl in my elementary school class who had type one, and she was always leaving class to get snacks and had just a little bit of special treatment. So I knew because of that loosely what it was, but none of the details. And so having this person as an example of my mind, I was quite scared. And my dad came and picked my mom and I up from the doctor’s office. My sister went to a friend’s house and I spent the night in the hospital that night at Texas Children’s Hospital where I was admitted, administered to insulin. They told me I could eat anything I want as long as I took insulin for it to assuage my fears of a life with type one diabetes. And my first meal as a type one diabetic was actually a McDonald’s Spicy McChicken sandwich.
And yeah, I remember eating that in the hospital bed while they dosed me insulin. And my mom was sitting right beside me just with a lot of fear and concern on her face. And that is the origin, I stayed in the hospital for at least overnight. A lot of those details are quite fuzzy, but I went to a crash course on managing type one diabetes the next day. Learned how to inject a syringe into those squishy absorption pool toys, and into oranges and eventually into my stomach. My mom and dad both also learned how to do it into my stomach and into my butt cheeks. But I wanted to take charge and manage my diabetes mostly because the endocrinologist who I had been introduced to was this dude with a fluffy mustache who sat across the room from me and with a big smile on his face, yet serious told me, “Jesse, you are your own doctor now. This is all on you. You got to manage your diabetes.”
And gave me a couple scenarios of what it would be like to potentially lose a limb, or any of the other complications that type one diabetes comes with it. So that week in January in 2006 was quite monumental, and I actually don’t really remember that much of my childhood before that point. It was that big of a memory where I feel like when I reflect on my childhood, my life started then.
Ben Grynol (08:03):
Man, that’s a lot to process as an 11-year-old kid. Leading up to it, so do you remember… There are these visceral memories that sounds like the water bottles in the grocery store, but do you remember physical changes or physical feelings where you were thought about it for a sec like, hey, I’m urinating more, or I’m like excessively thirsty, or how did that sort of happen? Did you notice it? Were you noticing changes in yourself?
Jesse Lavine (08:36):
I noticed changes when I was… I had already learned how to not pee in my bed overnight, and then here I was as an 11-year-old kid being in my bed overnight multiple times a week. And waking up at 2:00 AM to chug two liters of water underneath my parents’ desk next to their mini fridge in their office overnight. And so I don’t think I had quite a grasp of what was normal enough to identify that as concerning, but my mom definitely did. So I’m grateful for her to have noticed those signs because there are a number of stories of people with type one who don’t know that they have type one. And those symptoms are misconstrued as flu or a cold or ADHD, there’s a bunch. But people often get admitted when they’re in diabetic ketoacidosis, which is a very dangerous situation to be in. And it’s potentially fatal if you don’t catch it in time and administer insulin to reverse that keto acidosis.
Ben Grynol (09:39):
Yeah, so sketching can be so dangerous as kids, the ones that wants the juice or the coke or whatever. It is. And so if you’re thirsty and you want fluid and the people are downing these drinks with tons of sugar in them, it’s just making something that’s already in an adverse state making it exponentially worse. And so you think, hey, I’m mitigating my thirst with… I’m going to drink this liter of apple juice. And that’s where it gets so dangerous and why it’s important to make sure that people are getting the right diagnoses early enough. And with enough insight and accuracy of what are the next steps, what do you do from here?
Jesse Lavine (10:21):
Yeah, totally. And actually that day when I went to the pediatric office to get my glucose test, I was at my friend’s house and I was quenching my thirsts with Coca-Cola. So that’s definitely a reason why my blood sugar’s in the 500s, because I was not able to process any of that sugar from the Coca-Cola.
Ben Grynol (10:38):
The doctor, whomever it was that gave… We can call a spade a spade, objectively poor advice saying, “Hey, you can eat whatever you want. Just make sure that you’re offsetting with the right amount of insulin.” Not a good way of framing anything because you’re setting the wrong expectation, nevermind the fact that it’s just poor quality processed food aside from the actual makeup of the food and what it’s going to do to your blood sugar. But how common do you think that is? Do you think that’s a historical thing where it’s like, well, that was almost 20 years ago? Or do you think that still exists where people are just giving people that they trust, that being healthcare practitioners, somebody comes in maybe without a foundation of knowledge about health and they take it at face value and they say, “Great, I’ll do this.” Do you think that still exists?
Jesse Lavine (11:36):
100%. Yeah, that definitely exists to this day. I talk to a lot of people who have type one diabetes and they’ve been diagnosed recently in the last couple of years, and that’s still consistent advice that they get because it’s true. You can eat whatever you want as long as you take insulin for it. I have an insulin pump that I can dose as many units as I need for as many carbs as I’m about to eat. It’s true, but it’s not a good way of managing your diabetes.
Ben Grynol (12:05):
Yeah, don’t go eat a whole birthday cake.
Jesse Lavine (12:08):
Oh, yeah. And there is probably zero processes that you can define or engineer to eat whatever you want and take as much insulin as you want and maintain a stable blood sugar. It’s the law of large numbers, which comes from Richard Bernstein’s book. The more inputs you have, carbs and insulin wise, the less control you have. And so I didn’t realize this until basically nine years after I had been diagnosed. And I had considered myself quite a good patient. I tested my blood sugar about 10 times a day on average, and the recommendation was six at the time, just before and after meals and before exercise too. So I was always aware of it and I always [inaudible 00:12:54] with me. And I had one of those little mini backpacks that kids with chronic conditions have to carry all their supplies with them.
And it wasn’t until I was in college and was falling asleep in all of my classes after lunch that I took the semester off for a medical leave of absence, and I went home to Houston. I got a new endocrinologist who recommended that I put a continuous glucose monitor on, and I did. And it really changed the course of my diabetes, because I realized that everything the doctors have been telling me up until that point was incorrect. I think there’s some nuance in incorrect there because like I said, it’s true you can manage your diabetes that way. But you’re not going to have good quality of life. And who wants to go to college and fall asleep every day after class and not be able to focus in this tuition you’re paying for.
Ben Grynol (13:52):
With or without diabetes, and it’s natural that happens with people that are in their late teens or early adulthood, especially if you go off to college where it’s like… People tend to… Not everyone, I don’t want to generalize but a lot of people tend to sort of go off the rails. They start trying all these new things. They’ll maybe eat poorly for whatever reason, they might start consuming more alcohol. They’re just doing things that with or without diabetes as hard on your body period, your body cannot normalize back to some baseline. Or it does but you become more and more unhealthy because it compounds over time. And so even though you’re getting this advice, hey, you can manage diabetes with insulin and just make sure that you are understanding what your inputs are, the amount of insulin that you’re taking, it’s hard if you’re drinking alcohol. There’s certain things that are going to put you into a state that is just like your body is not going to be into mode of health, it’s going to be into a mode of trying to constantly repair itself.
Jesse Lavine (14:56):
Yeah, that’s exactly right. And I think the analogy there is if someone with type one diabetes, what I was seeing for the first nine years of my diagnosis was eating whatever I wanted as long as it took enough insulin for it, you’re basically on the same track as every other American who is on track towards pre-diabetes or type two diabetes. I just don’t create insulin, but I’m still using it from a vial. And the more insulin I take for the more carbs and processed foods that I’m eating to cover, the more resistant to that insulin I become. So it’s just this sort of never ending yarn of ball that keeps getting wound up, that once I finally put a CGM on and change my foods, I literally cut my insulin intake by 80% overnight just by changing the foods that I’m eating. And I’m not starving myself.
I’m still eating delicious, beautiful, colorful meals, but the amount of insulin that I have been taking my whole life, I had realized once I saw the data in my face from the CGM was like, oh, that’s not necessary. You don’t need to do that and feel like shit all the time in your day-to-day life. You can have diabetes and still function normally. I think another way that I conceptualize this sometimes is type one diabetes is an allergy to carbs and insulin is like your EpiPen. You can still eat carbs, but you have to account for it and have that emergency shot there waiting for you. So whenever I do eat carbs, it’s got to be worth it. If someone’s handing me a dry piece of banana bread, there’s no way I’m going to take insulin for that.
But if it’s moist and chocolatey and my mom made it, then I will definitely have the slice and take insulin for it. And that’s where sort of since that time, in my nine-year history when I put a CGM on and learned the rest of how to manage my diabetes, I’ve gone through pretty much every single diet imaginable. And now I think about it as like, okay, I have a tool belt to navigate different strategies, whether I’m eating a meal that is only carbs, a stray bowl of pasta, nothing else, bowl of pasta with hunk of cheese on top, bowl of pasta after 20 mile bike ride or bowl of pasta and then you go on a 20-mile bike ride. All of those different scenarios require a totally different calculation of how much insulin I need to take, how many carbs I’m counting for, et cetera.
Ben Grynol (17:48):
Yeah. And when you’re consuming all these different things, you take the hard pass on the dried banana bread. But it’s one of the challenges outside of the type one community. Anybody who’s managing diabetes as a disease, when looking at glucose in isolation, when looking at insulin, we’re looking at these independent markers. You can be doing, let’s say you go down the path of eating whatever you want because that’s the advice that you’re told and you manage it through insulin. Other markers like uric acid could be flying through the roof. It could just be so far out. But because there might not be awareness that you are doing this to your body where this is compounding over time, there are multiple markers that can be impacted by making these decisions. And that’s something that regardless of the outlook, as a company we have this position where it’s like let’s make sure that everyone understands the foundation of when you do this, this is a potential outcome.
If you’re going to choose and which is fine, everything should be balanced, but if you’re going to choose to eat the dried banana bread, you should just know the impact. And that’s what we say, whether it’s you managing diabetes versus somebody that’s eating that independently, it is just know what the response is and know how your body’s going to respond. And don’t do it every single day. We don’t want to start doing this, what’s the spicy McChicken as the first sandwich? It’s like, don’t do that. That’s just not going to be a good outcome.
Let’s get into this idea of the highs and the lows. I imagine that the journey when you’re 11 and you become your own doctor and you take this into your own hands, you have, I’d assume a lot of autonomy and ownership. You’re really taking your health into your own hands, but you’re also 11 years old and you’ve got so much to learn in the world. What did the journey look like as far as the highs and lows and some of the things that even you experience to this day? What is it you’re feeling when you’re telling people? What’s sort of the hesitation, is it that people don’t understand it? Is it something that you feel proud, you’re part of the type one community? It is very much a part of your identity, of anyone’s identity. But is that something that you feel proud to have this part of your identity? Or is it something where it’s hard to explain and so it’s easier to avoid it?
Jesse Lavine (20:11):
So yes, I am proud to have it as part of my identity, but it has not always been that way. And I think that there have been countless highs and lows. But going through school… So when I was first diagnosed at 11, I guess for the first two years that I had been diagnosed, I was very angry and resentful of the fact that I had this. And took a lot of my anger out on my mom, who was my primary caregiver at the time. And there was a moment when I was in seventh grade, my brother came home from college and had observed the situation at home for a little bit. And there’s been a couple of times of people having across the table conversations with me and looking me in the eyes and telling me very impactful things. My brother told me, “Dude, you got to stop being a dick to mom.
She’s just trying to help you.” And it was at a point where I realized that the anger that I had been lashing out at my mom was not helpful at all. It was causing her stress on top of the already stressful job of basically being my pancreas at 11 years old. And so that was a turning moment for me. And that also coincided with me switching middle schools. The middle school that I was at they weren’t super adaptive to my needs as a type one. And a lot of my friends, I think just didn’t know any better and were kind of giving me a hard time. They would take my glucometer and play keep away from me in the playground. And when I went to public school from a small private school, it was sort of like sink or swim. And the nurses wanted me to come into the office and write my blood sugar down, and check my blood sugar in the office every day before lunch. And I was like, this is ridiculous.
I check my blood sugar all the time and I don’t need to come to the office to do that or tell you guys what I’m at right now because I can do all this stuff on my own. But they were protecting their own liability. So by the time I graduated high school, I was ready to just be out of there. And just reclaim my independence as someone who had been having to play along with other people’s rules for a long time because they weren’t comfortable with me being in their community or classroom with type one. I think another experience was at summer camp, there was an experience we went a field trip from camp to a waterpark. And I jumped into the pool with my insulin pump on. The manufacturers had told me it was waterproof, and I learned in that moment that it was not.
And so I had to go get an overnight device sent to the camp, and I had to stay in the infirmary overnight. And I think that my mom came to bring extra insulin or something. And the camp director sat me and my mom down and was just like, if you don’t keep your blood sugars managed, you’re never going to be allowed back at the camp. And so my mom was my guardian at the time and was just taking all these rejections from middle school teachers and from camp directors and so on. Yeah, that sucked. I think because of all those experiences, I didn’t want to have anything to do with my diabetes. I managed it. I didn’t have any burnout, which is burnout in type one diabetes is basically when you just don’t care to manage your glucose levels. And you’re using old pump sites and not giving insulin at the right time. And I was never doing any of those things. I was always checking my blood sugar and taking my insulin and doing the best I could with the tools that I had at the time.
But because of all these experiences where I feel like type one had disturbed the peace, I didn’t want any friends with type one diabetes. I didn’t want to be involved in any communities with type one diabetes, and I just wanted to be a normal kid. I just wanted to be as normal as possible. I went to a diabetes summer camp one summer before I went back to this other camp that we just talked about with the camp director. And I had such a fun time. It was like everybody there was type one, there were low stations everywhere. If you ever had a little blood sugar, there were juice boxes within a hands reach. And it was a sweet camp. There was a paintball course and you could ride skateboards.
And I had such a great time when I went there and I got in the car and I told my mom I never wanted to go back. And I think that’s just because I wanted to be normal. I just wanted to be around people. I didn’t want to be different for my type one and go to a diabetes camp, even though that probably was the most normal place for me.
Ben Grynol (25:21):
Dude, that’s hard because it’s like you’re wanting to be an insider but feeling like an outsider. It’s like you’re always never accepted because you’re never understood. You got to go to the infirmary, oh, you’re going to have to do this. You got to do these checks. And I think that’s the hard thing is you want to be… Especially as a kid, it’s like you just want to be accepted by the group and not think that something that people view as some complication, or it could make somebody feel almost like they’re a burden in some way. And you’re like, yo, let’s set this thing aside and just talk about Jesse with the me, the identity of the guy that likes music and canoeing and name all these things. It’s just what people… Just let’s focus on interests and not define based on some diagnosis. But people tend to do that.
I think just within the disability community extrapolate that far and wide, people get labeled by some diagnosis. This is that person, and then they start to remove or they start to have this bias that if you have some diagnosis, then you can’t have any interests. That’s the hyperbolic version of it, but it’s like that is the most ridiculous thing to say. And so I could imagine as a kid how you’ve got this lens that you’re like, yo, just let me in the club. Meanwhile, you feel like you’re on the periphery of the circle, the outsider looking in.
Jesse Lavine (26:40):
Yeah. And this is cool because there was a turning point from that where when I took that semester off from college, and when I put a CGM for the first time, I was able to see my own data. And it’s movie quality. It’s going from taking 10 snapshots of glucose a day and not learning anything. I have no idea what my blood sugar’s going to be when I check it, except for when I feel low or super high. But those are extremes, and I want to be not in the extremes. So when I put a CGM for the first time, I was able to see that by changing my food and lifestyle and many other factors that I was able to have normal blood sugars. And normal quote unquote is, “not within the range that I said” which is 80 to 150 most of the time.
And to see my blood sugars go from super sine wave oscillations to flat lines and to know that that’s possible, that was super empowering. And so when I was 19, I was like I had been basically shunning the type one diabetes community until this time because I didn’t want to deal with it. I didn’t want any friends with it. I didn’t want to relate to anybody on that level because to me type one at the time was like, yeah, I have type one diabetes which means my blood sugar goes up and down and I have to think about those things all the time. But when I was able to take many of those factors away and have flat blood sugars, I wanted to show other people that that was possible and how to do it. So my journey went from shunning the type one diabetes community to jumping into the deep end.
And so I was in Boston for the summer. I had an internship with a two D exchange. I had made my first friend with type one diabetes who wasn’t from summer camp. And I made a bunch more friends with type one diabetes, and I got super involved in the diabetes nonprofit space. And I met people from the College Diabetes Network, which is a support group that you can erect in your own college campuses. And so I brought one back to Claremont Colleges where I was a student and started to cultivate the diabetes community there because I was like, I bet you that people are having the same experience that I was having a while ago. And I would love to help people stabilize their blood sugars. And I know what that’s like to not be in the 400 all the time, because that’s a really bad feeling.
And continuing down that path with the nonprofits I got connected to beyond type one. And then by the time I was about to graduate college, they had reached out to me and they said, “We’re going to do a cross-country bike ride with 20 people all living with type of diabetes. Do you know anybody who wants to do it?” And I said, “I do.” And I hadn’t really ridden a bike that much. I had back pains from playing golf as a kid. And so I basically did everything I could to make this bike trip possible. I had to do back surgery a couple of months before I went on this trip, and I just accelerate rehab. But in the summer after I graduated college, we rode from New York, San Francisco, which was a 70-day trip. There were 20 people living with type one, although one of them was a mom of a teammate who did not have type one.
And we filmed the documentary about it and we stopped in all these places along the country, and met people with type one along the way with all types of different backgrounds and access to healthcare and experiences living with their type one diabetes. And that was really cool because when I was diagnosed, I basically thought that my potential as a person or as an athlete was truncated, but I was running my bike across the country and that felt pretty peak potential. Nothing was holding me back, not even my type one. And I was using that as fuel to power my legs across those miles. And the coolest experiences were when we met kids along the way who were like me, resentful, angry, didn’t want to deal with their diabetes, had their moms inject their shots. And they saw 20 people come through tattooed in these insulin pump devices and CGM devices.
And all they could talk about after we left was how much they wanted to be involved in their care. And that night at dinner, they picked up the needle and put it in their leg, and they picked up the CGM applicator and put it in their arm. And we got texts from their parents saying, you changed our kids’ lives. And every time I talk about those or think about those experiences, like it chills on my face because it’s cool to be able to demonstrate that anything is possible with your type one diabetes and it doesn’t have to hold you back in any way. It doesn’t matter who’s told you what you can’t do in your life. If you want to do it, I think you can do it.
Ben Grynol (32:01):
It’s wild. It’s like you forget how these individual or independent touchpoints can have such deep impact and meaning. And it’s almost this first full circle thing where the conversation with your brother, things that really stick in your memory, you pass that along to some kid that you’ll probably never… Let’s make an assumption you’ll never see this kid again. And that is a touchpoint that resonated so deeply with that kid or a group of kids that they’ve now changed their life, and the way that they think about what’s possible because you’re biking across the country for 70 days, that’s got to give you a boost to your mental game, full-stop. When you’re doing it and managing your diabetes and fueling and learning how to do that perpetually over the course of 70 days, that is a challenge in itself because it’s like you’re constantly adapting to what your body is doing. No one’s body automatically snap their fingers as going, exerted myself.
And then usually the body’s in the state of repair the next day. It’s not like I exert myself and then the body’s going, I’m exerting myself again and again and again. And so you’re starting to adapt to what’s happening. So that in itself must have sort of given you a new lens on the way that you think about fueling and what is possible for you to do.
Jesse Lavine (33:24):
Yeah, no doubt. I had to learn my diabetes every single day. Any strategy that I had defined the previous day did not work the next day because of, we were doing a different length of miles. We were doing different elevation change. We were in a different temperature.
Ben Grynol (33:44):
You slept differently the night before.
Jesse Lavine (33:46):
Yeah, exactly. Basically anything that you can think of that exists in the world can affect diabetes management.
Ben Grynol (33:56):
Some of the frustrations that you’ve experienced. So you’ve got this empowering experience doing the biking, learning to take your health into your own control and almost having these chapters of life. It’s like the first chapter when you’re a kid and you’re learning it, and then you’ve got the middle years when you’re going to camp and you’re in high school. And then you’ve got your early adult years when you’re in college. Fast-forward to today, it’s all these micro chapters that you’re constantly learning, but what are some of the things that you’ve seen as far as things you’ve been happy with healthcare and grateful for? We have to always look at things like what are we grateful for? Can we express gratitude for this thing, even if it is a little bit inefficient? And then what are some of the things where you’ve thought like ahhh, it’s a pain point in a frustration with either the healthcare side of things or even the management side of it?
Jesse Lavine (34:51):
I guess on the positive side, I like my membership with One Medical now. That one was hard to think of because that feels like most of my experiences with healthcare recently have been quite frustrating. I think I’ve actually only really had one good experience with healthcare, which was the doctor that I saw after I took that semester off who prescribed me a CGM for the first time. Unlike any doctor I’ve ever had, but it was a coach and a doctor at the same time. So we exchanged numbers and he would check in on me every once in a while, every couple of weeks to see how I was doing. And if I had any questions and I knew that I could reach out to him, if I did have questions. And that was awesome because it felt like I wasn’t alone when I was figuring out this new tool and just trying to get a handle on all these different variables.
But I guess this sort of feeds into a frustration is that the type of advice you get on how to manage your diabetes differs from every endocrinologist. Being someone who has done a lot of self experimentation, I want someone who in their position as a doctor is going to empower that and help encourage that and to say, “Okay, cool. Here’s all the experiments you’ve done in the past. I think that if you did these couple more, then it would help you smooth out the spike that you’re having overnight.” For instance. But a lot of them don’t have the bandwidth to have that type of conversation and that type of care and personalization for each person. And so in my quest to find a new endocrinologist, I’ve just been hitting my forehead against the wall, that I have these goals to have normal blood sugars and have my A1C below six.
But there’s a lot of risk that doctors see with that because the lower your A1C goes, the more risk of hypoglycemia you have, which is true. But also, I don’t want to pad my A1C numbers and be living with high blood sugars and off. Instead, I’d rather have blood sugars that are just stable all the time, and take out variables that cause spikes and dips but that’s pretty hard to find. There’s also the whole other piece where insulin and CGMs and glucometers and test strips are unaffordable to so many people. And I’ve never been in that situation, and that’s a massive privilege that I have. So I guess another positive is just the amount that technology has improved since I have been living with type one. I don’t think that this level of empowerment and sense of control that I have with my diabetes would’ve been possible with a regular finger glucometer.
I think I would’ve had to check my sugar 50 times a day in order to get to that level, and that interrupts life whereas C G M doesn’t. You can just look at your phone and see where your glucose levels are. And then I think the other part too is diabetes feels like such a burden to manage. Even when everything feels like it’s going well, I can have a perfect week and then Saturday morning I wake up with a blood sugar that’s 400 because my insulin pumped died overnight, whether the battery died or the cannula that’s in my arm bent or the insulin somehow got bad, and then you have to deal with that.
It’s like, okay, I guess I have to go open up another viral insulin and recover for the next couple of hours and or days. High blood sugars take a long time to recover from. My analogy is when I wake up with a high blood sugar, it’s like I’m a 1995 Dell laptop versus a 2023 MacBook Pro when I feel good and my blood sugar’s 80 to 100. But going back to the part where diabetes feels like a burden, it’s like I think about diabetes all the time. And there are things that I can do to think about it less, but it’s still there. And if I go to the doctor and they’re like, “Hey, you have a irregular heartbeat. Let’s get this checked out. I’m going to refer you to a cardiologist.” And this has happened before, my reaction is no, no way. I’m not going to the cardiologist. I already have to deal with type one diabetes.
No, I’m just not going to do it. It’s not worth the time or effort because I know how difficult to spend to go through that system and find a good endocrinologist, and also to be in a position where I took their advice for nine years and realized that most of it was wrong. And so who’s to say that the same isn’t going to be the case for finding a cardiologist, and go down that path with a heart problem that may or may not be real.
Ben Grynol (40:08):
It feels easier to avoid it even though that’s not the right thing to do, just because one more thing and now you got to work through this and educate yourself and think through it. So it’s like I’ll punt it and I think that becomes a pretty typical thing where people just don’t want to address health considerations head on as easily when it feels like it’s outside your control. When you feel that you’ve got the insight at your fingertips to maybe come to some conclusion yourself, a little bit of a conclusion, it feels like you’ve got more autonomy, but when it feels out of your hands, it just feels like it is. It just doesn’t feel in your control and it doesn’t feel like anyone wants to deal with it. One of the things you said around waking up, you’re talking about it’s constantly on your mind.
You wake up, you can have plans for the day, let’s just use the morning. You have plans for that Saturday and it is always on your mind, because if you woke up and your blood sugar is at a higher level because you’re… Let’s use the example of your insulin pump had died overnight, then any activity, let’s say we’re going to go to brunch with friends, it’s like that’s off. You just have to adapt always. You’re not just like, I’m going for that long bike ride tomorrow because it’s always what is the most important thing in front of me? And it’s getting this back under control. And so if it’s taking time to get back to the baseline that you want to be at, I can see how that’s something that you’re constantly thinking about and considering how it impacts your day-to-day.
Jesse Lavine (41:48):
Yeah, I think when I think about my priorities, it’s health, Levels, my master’s program that I’m almost done with and then socializing. And health is at the top because it should be. But my dad has always drilled into me that health is always a number one priority. I think that it’s easier to say that it’s the top priority, but it’s hard to make it so. The cardiologist example is a perfect one where obviously you should go get your heart checked out if someone tells you you have an irregular heartbeat, but saying that you don’t want to do that because it’s another doctor’s appointment of the many that you’ve had that year, it’s not a good reason. It’s valid valid, it’s like, yeah, you can be burnt out by the medical system and not want to do that. I think another thing with type one is even if your blood sugar is high or low, it’s still my mindset to power through.
I can’t tell you how many times during that bike ride that I didn’t stop my bike when my blood sugar went low. I just ate gummies while I was riding or dialed up my pump to give myself insulin and not stop and keep going. I’m not sure how common that is in that space, but I guess what I’m trying to say is the realization or the alignment of health being my actual top priority compared to what I say is my top priority, just getting closer into alignment. And there have been many times when my blood sugar hasn’t been good when I wake up and I still have to do the thing. But there’s also some level of give and forgiveness where it’s like, okay, my blood sugar is high and I’m just going to say no to this thing. And prioritize myself and feeling good for that day as opposed to going to this brunch that I said yes to midweek.
Ben Grynol (44:04):
Yeah, because you have to look at those priorities and you have to make the decision of… Especially with let’s just use brunch for an example. It’s like everyone always has the best intentions for everything. And then something happens where you’re around friends, you’re around social pressure and whether or not somebody is living with type one eating a croissant and a waffle and all these things, that brunch is not going to help you if you’re around. And maybe you didn’t intend to but your friends are saying, “Ah, just come on, have the orange juice and the waffle and the whatever.” And if you are already in a state where you’ve got heightened blood sugar and you decide to go to the brunch where you’re not making health your top priority, and those decisions come in, it’s just like that. You get further and further away from it.
And I think when you’ve got these priorities or these things that we set our mind to or our mental model of the way we view ourself, it just feels bad if you get away from what you view as your priorities. And how much willpower you have over them, whether or not it’s like you’ve got this identity. I exercise every day, I do this, I go to bed at this time. It’s like when you’re not doing these things that are what you’ve identified as your identity and your priorities, it just feels mentally bad. And then there’s the physical component of it too, which as a perfect marriage of the two together where it’s being in a poor mental state and being in a poor physical state, it’s just like a storm is brewing and it’s harder to recover from that.
Jesse Lavine (45:40):
Yeah, and I think going back to one of frustrations of the healthcare system is that this psychosocial component of living with a chronic condition is so often glazed over where it shouldn’t be. Like how you’re doing mentally, emotionally plays such a huge role and is so circular in the management of everything else. How you’re managing your diabetes, how you’re performing at work, how you’re performing at school, all those things are totally intertwined whether or not there are their own priority items.
Ben Grynol (46:16):
Yeah, and then you get into a state where you’re feeling this pressure all the time to do all these other things when you’re trying to manage your top priority, in your case being health. When you think about where things are headed, healthcare’s evolving very quickly. The world is changing faster and faster by the day with things like OpenAI, and we know that technology is only accelerating. And certain things that were not possible in healthcare five years ago, 10 years ago, 20 years ago are now starting to become possible. And where the future is headed is very different. But what are things that you think about as it relates to you managing your type one and being part of this community and where things can go and where they’re headed? What are some things that you’re really looking forward to be able to be part of the type one community in a way that you haven’t been able to be before?
Jesse Lavine (47:14):
I’m really excited about all the artificial pancreas developments. I’m wearing one of them right now, which is the FDA approved tandem T-slim control IQ technology, that syncs with my Dexcom CGM so that my blood sugars are on my insulin pump. If my blood sugar’s going high, I get more insulin when it’s going low, it shuts insulin off. And that’s really helpful. I’m really excited about more intelligence there and being able to have more control over what the numbers are. Like a future could be I put it, I just eat and my glasses know what’s going into my mouth, and then I have insulin that doesn’t take 45 minutes to go into effect but it takes a couple of minutes. And it doses or is somehow just activates within my body because it’s like encoded in a implant somewhere. That’d be awesome. I would love to not have to think about my diabetes.
I thought about this a lot actually in different context, but when people ask me if you could cure your diabetes or not have it, my answer is yes and no. All of the lessons and experience that I’ve had with type one, I would not give up. I think that they’ve been really powerful and very informative for my life. I would love to not have to think about my blood sugar and how it impacts my future mortality, or today feeling or today ability to eat lunch or not eat lunch. I’m just looking at glucose and I take insulin. That’s the only things that I have really to make decisions with for diabetes management. But like you were saying earlier with the uric acid, how do you know that this food isn’t spiking your uric acid levels even though it’s maintaining your glucose levels? When I was on a keto diet, that was a great example.
I had super stable blood sugars, but I felt kind of sluggish and tired and the blood sugars were how I wanted them to be, but I wasn’t feeling super great or refreshed or energized. So I’d be really curious to know what other molecules my body are reacting to that. And the state of biological observability that we talk about at Levels is something that I’m super excited about, where we can have more than just glucose to look at to make decisions off of. Like if there’s glucose and another molecule, that’s way more information than we have now. And I think there’s a part of me and a part of I think a lot of people living with type one that becomes a little bit immune to see glucose spiking and falling. For example, I’m quite immune to my Dexcom alarms. I just ignore them and my pump beeps a lot and sometimes it’s telling me important information, and sometimes it’s telling me that the clock has changed times or something like this that doesn’t really matter for me. And so yeah, just being able to have more insight there, I think.
Ben Grynol (50:29):
Yeah, there’s so much room with all the work that Dr. Perlmutter’s doing around uric acid, Dr. Chris Palmer’s doing around mental health as it relates to metabolic health and starting to uncover some of the research around things like lactate and how that ties into mental health. It’s just marker after marker that we can get deeper insight about. And when we’re looking at things in isolation, it’s the same thing that we talk about all the time. Exactly what you said, it’s one marker is great but it’s a single marker. One is better than zero, but there are so many to take into consideration that can help us get to healthier states so that you aren’t going on some type of diet and you are fueling in a certain way. And one thing’s telling you, hey, quantitatively and objectively this is good, but qualitatively we don’t feel great.
And so then if it’s such a mismatch and such a juxtaposition between what you’re aiming for and the way you physically feel about it. And so if you can understand why you physically feel that way, it’s only going to help you to make other changes where it could be something super simple making it up. But it’s like you eat something every morning, it’s like that one thing that you’re eating and you’re like, oh, I just kind of stopped doing that, that’s easy. And then you get back to physically feeling good and achieving the quantitative outcome that you want to have, stable blood sugar levels and stable insulin so that it’s never oscillating like this peaks and values and peaks and values. You get to something that feels like it is manageable and healthy and that you’re empowered. You can have this in your control, and it’s your decision of how you choose to fuel yourself and manage your diabetes.
Jesse Lavine (52:18):
Yeah, totally. I had one conversation that I remember pretty well with a friend who also has type one. And we were both on the keto diet together and experimenting with keto and vegan at the same time. And he was telling me that just how excited he was about how flat his blood sugars were on the keto diet. And he was like, if I can maintain this but it gives me a heart attack when I’m 60, it’s worth it. Versus having spiky blood sugars but living to 80 and declining over time. And I think about that a lot because I want both. I want to have good blood sugars and also know what the other impacts are. Going back to the psychosocial component, which I sort of stopped on earlier. But when you’re managing your diabetes and eating something because it’s good for your blood sugar, but you don’t know what else it’s affecting or negatively impacting, that’s a gamble that you’re taking in that moment.
I used to eat blocks of cheese for lunch, only blocks of cheese, and that kept my blood sugar super stable. But how did it do everything else? I have no idea. And it’s really important to have that insight. And so I’m really excited about the movement that’s happening for glucose to become a biometric for everybody, where people at Levels are wanting more than just glucose. And rightfully so, there’s so much more. This is the plane and rocket analogy where rockets have 10,000 sensors per like wing, and humans have zero. I have one right now. You have one on right now, and they’re both glucose sensors but I don’t know. I’m not sure I can nail that metric, but is my heart going to keep pumping past 45 or not? And I would love to know that with some better data.