Diabetics Doing Lifelong Journeys with Jen Stilson

[00:00:00] Rob Howe: Welcome back to the Diabetics Doing Things podcast, where we're telling the amazing, untold, wacky, weird, and inspiring stories of type 1 diabetics from across the world. I'm your host, Rob Howe, and I wanted to let you know that we now have over 500 years of living with T1D on the podcast, and we're on track to be over 1,000 by the end of the summer, which is pretty exciting. I also wanted to chat about my new email series, Friday T1D Feels, where I send you a personal note, no fancy graphics or anything like that, about what I've been thinking about in the world of type 1 diabetes during that week. If you're into that, just go to diabeticsdoingthings.com and sign up. I'd also like to take a minute to talk about hashtag coverage to control. JDRF is raising awareness around the fact that most of us don't get to pick the insulin pumps we have, just the ones our insurance will cover. Just imagine if your cell phone was like that. Except this isn't a phone, it's what keeps us alive. So let your voice be heard and tell your insurance company that T1Ds and their doctors should decide what kind of pumps they use, not the companies. I'm looking at you, Aetna, UnitedHealthcare, Blue Cross Blue Shield. Let's get this right. Okay, enough chatter. Let's get back to the episode. Hello and welcome back to another episode of Diabetics Doing Things. We are telling the amazing stories of type 1 diabetics all over the world. And my special guest today is Jennifer Stilson. Jen, thanks so much for joining me on the show.

[00:01:30] Jen Stilson: Hey, Rob. It's a pleasure to be here. Thanks for having me.

[00:01:33] Rob Howe: And I know you're calling in from New York today. And I want to give our listeners a little bit more insight as to sort of who you are and why you've come upon the Diabetics Doing Things podcast today. I've had a little bit of extra caffeine just now, so I'm a little bit, my words are tangled up.

[00:01:52] Jen Stilson: I feel you. Me too.

[00:01:56] Rob Howe: So yeah, so give us a little bit of background on you and where you're from and how you joined the T1D family.

[00:02:03] Jen Stilson: Sure. So I am originally from Washington State up in the good old Pacific Northwest, Spokane, Washington, born and raised. I went to school at the University of Washington in Seattle. And during my time at school, I was fortunate enough to have an internship with NBC here in New York City with late night. It was late night with David Letterman at that time. It was before he made the switch to CBS. I got an internship, went back to school, and then about a year later, they called me with a job opportunity to be the receptionist for the show. And I did that for a little bit, and then I moved into Dave's office as one of his assistants. did that for a couple of years which was a fantastic experience obviously laughing every day is never a bad deal and then after that I went to Jon Stewart's show when he had a late night talk show it was syndicated it was broadcast on on various stations across the country and I that was the point where I realized I wanted to work in music because I was given the opportunity to start in the music department as an assistant. And I immediately fell in love with that. And we got to book all sorts of really great cutting edge bands. You know, it was in the mid to late 90s. The show, unfortunately, didn't work out. John went on, of course, to host The Daily Show. But I followed my boss at The Jon Stewart Show to VH1. and went to the music department there and was, you know, slowly kind of moved my way up in that department, ultimately becoming a vice president in the music and talent relations department. And about two years ago, we moved to MTV. And I was at MTV for a couple of years working in more of a music marketing capacity. So that's kind of my story. And I live in New Jersey with my great husband, Greg, and we have two fur children, Gerard and Pepita Consuela, a French bulldog

[00:04:36] Rob Howe: and a long haired chihuahua. So that's my story. What great names for your fur babies.

[00:04:47] Jen Stilson: Yes, thank you.

[00:04:49] Rob Howe: So you sort of just glossed over it. I mean, what a story, first of all. You know, and what an opportunity to work with some very notable names, obviously. What do you, you know, when you were working for, you know, Jon Stewart and for David Letterman, what do you remember from a type 1 perspective? Obviously, those are jobs that demand sort of like a 24-hour, I imagine not the typical nine-to-five environment. Um, any, any sort of stories from those days with your diabetes?

[00:05:20] Jen Stilson: Well, it was interesting because, you know, part of my job with David Letterman was, you know, ordering food and such for him. And he was a big Hershey's, uh, chocolate fan, uh, milk chocolate bars. And so obviously, uh, that would come in very, very handy when I was having a low, um, there would be several boxes of chocolate in my office at any given time. And, you know, whenever I was feeling a little funky, I just have to reach over to the side there and grab one. But, you know, it was very demanding, certainly. And for some of it, there were times where I'd get a call, you know, late, late at night or super early in the morning, I have to kind of rush in and, and go and take care of things, you know, being, being his assistant required that sometimes, not a lot, a lot less than you would think. I mean, there were two of us who assisted him. So we would kind of trade off on, on, you know, the various things that he would need, but it was exhausting, but it was also exciting at the same time. And, you know, I found it challenging to kind of keep up with, you know, with what I needed to do for my diabetes. And oftentimes, I would ignore it, which is obviously a bigger part of the story that we'll get into. But I somehow managed. I would go for hours sometimes without eating, so that's why I say those chocolate bars came in handy sometimes. and you know I certainly wish that I had more time to check my sugar and and and manage things a little bit better but I was so active and and constantly on the go that I felt like you know it balanced things out in terms of you know physical activity etc and stress which is not good for you. But it was an excited kind of stress. So maybe that's a little bit different.

[00:07:39] Rob Howe: Right. And I think being in situations like that where it's just high energy all the time and high stakes, you're still going to manifest that stress. But at least sometimes you can go back and justify it a little bit that you're doing something that you enjoy and that it's a fun type of stress that you're undertaking.

[00:08:01] Jen Stilson: Absolutely. And I did just that. And I had the backdrop of New York City and friends and so many things going on all the time that it was a lot of fun. I mean, you have to remember that I came from, you know, eastern Washington. Suddenly here I am, you know, plopped in the middle of New York City in my in my early 20s. You know, it was like a kid in a in a candy shop. That's probably a bad reference for it.

[00:08:33] Rob Howe: I think it's more apropos than bad, I think, really.

[00:08:37] Jen Stilson: Yeah, I really it really it really was a fantastically exciting time.

[00:08:43] Rob Howe: and and i kind of want to go back to you know as you as you were diagnosed and you you mentioned uh that you're similar to me that you were diagnosed when you were 16 years old um going from you know eastern washington which i love by the way it has a special place in my heart because i uh am a 2013 spokane hoop fest champion so um small world very small world um and have some great friends up in the Spokane area. But that aside, let's go back to 16-year-old Jen is diagnosed with type 1 in an area that you mentioned. There weren't a lot of other type 1s around. The awareness and education was a little bit lower. What was that like for you?

[00:09:30] Jen Stilson: Um, you know, in retrospect, as, as, as I think about it, as I get older, um, it was traumatic. And at the time, I, I think I was a bit numb. Um, but I, I was fortunate enough, enough to have a mom who was a nurse. and she recognized pretty quickly that something was going on and suspected that it was type 1 and got me to the hospital right away and I was diagnosed. And I really, you know, I didn't know what hit me and didn't really care to understand it either. I just, I was locked in this state of not wanting to feel different and not wanting to feel, you know, I'm 16 years old and I'm sure you can relate. And you just want to be like everyone else. You don't want to stand out as, you know, the quote unquote sick kid, especially at that time, which was, you know, in the in 1986, where there was really little or no knowledge about type 1, at least around, you know, my school. There wasn't another type 1 in sight. So when I was diagnosed and word got out, people didn't know what to think. And, you know, I would get the, oh, my goodness, are you okay? And, you know, the rumors would start and people just, you know, thought it was a death sentence at that point in time. So that caused me to just kind of go deeper and deeper into my shell. I was a shy kid as it was and a shy, nerdy kid. and so I just I tried really hard to kind of push it aside and tell everyone you know listen it's fine it's okay it's not a big deal you know we're taking care of it I have the medicine that I need and I just kind of pushed it aside so you know if you talk to anyone anyone I went to high school with you know who knew me when I was diagnosed there was that initial shock of wow she's she's got this thing we don't really know what it is but whatever she seems to be okay she looks okay she comes to school and she walks around like everybody else so it quickly just kind of dissipated you know this whole Jen is a diabetic type of thing and I allowed that and um you know that is certainly one of the regrets that I have but it was just a survival

[00:12:25] Rob Howe: mechanism, if you will. And I love that. I love that you talk about, talk a little bit about when you're 16 years old, you're under tremendous pressure to fit in, to be normal. And you are starting to come to terms with your diabetes and your identity as a diabetic, as well as your identity and your social circles. And people start to look at you and say, oh, well, it doesn't seem that bad. She's pretty normal. And then falling into that trap where you

[00:13:00] Jen Stilson: just don't really acknowledge it as much anymore. Yeah, I mean, that I just kind of, I built a habit very, very quickly of sweeping it under the rug in an effort to fit in and an effort to just to be like everyone else and to feel like I was like everyone else. And I had my mother who was a nurse, obviously, in my ear all the time and wanting me to test and wanting me to, you know, just make sure I ate the right things, etc. So it was a strange dichotomy that I had going on. I had her and then I as soon as I would leave the house and I was on my own, it it was just a completely different story. And, you know, when you're diagnosed at at 16, where it's kind of just the culmination of peer pressure and just trying to fit in. I I took the route of just almost pretending like it didn't exist. And when I say that, it doesn't mean that I didn't take my insulin. I always took my insulin. And it doesn't mean that I didn't test, but I certainly didn't test the way that I should have tested. But I got into this pattern and this habit when I was out of the house of just not acknowledging it at all. And as the years went by, that just became the way I lived. and a year became two years, became five years, became seven years, became almost 30 years. And, you know, because I, you know, moved to New York and I had this crazy life and working in show business and so much excitement and so much going on, I didn't really allow myself, you know, the moment to sit down and really try to make the change that I needed to make because nothing had happened, you know, and I felt okay and everything was going all right. And my doctors, you know, although my A1C was too high, everything else checked out great. So I just kept living. I kept going down that path that was working for me until, you know, that day came when I had to, I had to face this. And, you know, it's not because I was ashamed of the disease necessarily, especially, you know, in my 20s, moving into my 30s and 40s. The shame part came when I was newly diagnosed and I just wanted to be like everyone else. But it's very difficult to describe and maybe I'm just not articulating it properly, but it just became a way of life for me to just kind of keep doing what I was doing because it was working out for me the way I was doing it. and um you know it's it it's really interesting for me to think about it now and you know listen hindsight is 2020 and we all have regrets but I think it all happened for a reason and um you know I I'm I think you know the point of my wanting to do this podcast with you today was to tell the audience that, you know, we all have, we all have different journeys with this disease. And my way just happened to be a little, a little different than a lot of people's, but it's all meant to kind of teach us something in the end. And, you know, I, I, I struggle with it a little bit if I think about it too much. But I think the point in everything here is that, you know, I'm here and I'm doing well. And, you know, if there's any sort of, you know, advice I can impart on anyone is that, you know, you just kind of have to find your way and the way that it's intended to be found for you as a diabetic and in dealing with,

[00:17:39] Rob Howe: you know, the daily struggle that is this disease. And that's so true. And I think, you know, finding your way and being confident in that is sometimes the hardest part. Before we kind of move on to your transformation, I want to focus a little bit more on, you know, your sort of walk in denial. And something that you said specifically struck me is that when you left the house, you tried not to think about it. And it struck me as interesting because I imagine that there are a lot of other people that are doing the same thing or feel the same way about maybe being out with coworkers or friends and needing to test their blood sugar and not doing it because they don't want to bring out their glucometer or they don't want to admit that something may be wrong or don't want to field questions about that. Are you there?

[00:18:32] Jen Stilson: Yeah, I think you just cut out for a little bit there.

[00:18:35] Rob Howe: Oh, no. Okay. Let me go back here. So I was just focusing on the idea that there are other people that are going through the same type of denial that you might have been going through, especially in your 20s and 30s. and people who are leaving the house and are, you know, not comfortable, you know, if they need to test their blood sugar, like testing it for one reason or another, either they're embarrassed or they want people to ask questions or whatever the case may be. And I wanted to know, you know, what were those emotions for you, maybe if you remember, and you know, how would you, you know, what would you tell someone who was going through something like that?

[00:19:22] Jen Stilson: Yeah. And I wanted to also express that, you know, and I'm going to sound like an old lady right now, but, you know, when I was growing up with the disease, the testing your blood sugar wasn't as simple as it is now. it doesn't, it didn't take five seconds. It took a couple of minutes and there are these big strips that you had to put a big old drop of blood on and then wait 60 seconds and then wipe it off with a cotton ball and then hold it up to a bottle and compare, you know, the colors to see what you may or may not be. And the range was crazy. Um, and then, you know, I would have to take my insulin out of syringes. So it was a thing. It became a thing to take care of my diabetes. And when you're young and you're trying to fit in, you don't want to have that thing. So I would just, you know, I would make sure that I took my shot in the morning. And if I had to take a shot before a meal or what have you, I would go to the bathroom and I would hide in a stall. You know, I never, ever felt comfortable, even around friends and family, I never felt comfortable, you know, injecting in front of them. So it was, you know, now I'm on the pump and I have a CGM and everything is a touch of a button and it's really easy. And I just want to express to the audience that we're so fortunate to have the technology that we have now. It makes it so much easier than it ever was. And it makes accepting the disease, I think, a little easier too. Because you don't feel like you're on display with it as much. and I felt like I was on display whenever I would test my sugar, just would engage people in questions and I just didn't want to have to sit there for 10 or 15 minutes and answer questions about it. I just wanted to do it. So, you know, it was just easier for me to look the other way. And you're absolutely right. We'd be in a situation and I'd say, okay, I need to test my blood sugar now. And I just didn't want to deal with it. So I didn't do it. And I was flying a little blind in kind of what my dosages were because of that fact. And then obviously when meters came around and were quicker and less conspicuous, then that was a whole different ballgame. But what I'm referring to, I think, is when the seed was planted at a very young age for me to pretend it didn't exist, it was because it was a thing, as I said before. And that just got ingrained in me as I got older. And even though technology developed around me, I really wasn't interested in it because I had been living this way for so long.

[00:22:39] Rob Howe: Right. No, and I think, you know, how it starts, it's something that I try to focus on. And really one of the main reasons that I started Diabetics Doing Things is because how you start is such a huge part of how you filter every other interaction with the disease or with other people. for the rest of your life. And like for you, you know, you've obviously like technology was a huge part of that because as well as awareness and education, because we just didn't know that much about diabetes really until the last 20, 25 years. And, you know, it was funny, you know, celebrating the nearly a hundred years ago, you know, the discovery of insulin. So it's just like the, the amount of time that we've had to spend with people actually living well with type 1 is

[00:23:25] Jen Stilson: relatively short by comparison. Yes. Yes. And when I was diagnosed, I mean, you know, it was very, it was very kind of a clinical approach to my diagnosis. There was no humanity attached to it, really. It was, was this, this nurse who just wanted to kind of do what she had to do and go home. And, and that made it, made it difficult for me too. And, and, and there was just very little education that was provided to me in, in a way that felt comfortable and felt human. So I had all of these things kind of coming at me at once. And I think I, you know, to make a long story short here, I was overwhelmed. And I was scared because at the time of my diagnosis, you know the the prognosis for type ones was in in older you know as they age was unknown really um and so i was just kind of looking into a vacuum almost and like oh i don't know what's gonna happen to me and then you hear all the horror stories as we all have heard and oh my great aunt had diabetes and you know this that the other um but there really wasn't any sort of reference for me of a healthy older person who had type 1 at that time. So, you know, it all just kind of coalesced into how I, you know, chose to deal with my disease at that time, which, you know, certainly was the opposite of kind of facing it and trying to embrace it. And, you know, that's unfortunate, but the, the good part of this story is I, I, you know, finally figured it out.

[00:25:23] Rob Howe: Well, and you said something there as well, um, that you didn't have a human approach to type 1 to refer to. Um, and I think this is a good time for us to sort of segue into beyond type 1 and the work that you do and the work that they're doing to humanize the disease and give a face and a voice to people, that's not as clinical. Because I think you're right. There's a lot of good clinical content. There's a lot of good clinical companies that are treating diabetes, but they're not really helping people live with it. Right. And so I think really in the last few years since Beyond Type 1 has come on the scene, Like it's a dramatic change in the voice of the T1D community. So talk a little bit about that and how you got involved and, you know, the work that you guys are doing.

[00:26:20] Jen Stilson: Absolutely. So it was, let's see, it was 2016. 16, yes. So last year, last spring, I had been having some difficulty with my left eye, and my vision was starting to be a little screwy. And so I went to my ophthalmologist, who's amazing, and it turned out that I was starting to show signs of diabetic retinopathy. and um so i went and you know it was ultimately determined that i needed surgery for it which was quite an interesting um experience that i can save for another time but um as i was recovering from the surgery um i had been working with nick jonas at my job at mtv we were doing a campaign with him called Ultimate Fan Experience. And he, I had booked him for this campaign. And so I was working with his camp and obviously knew he was a type 1 and speaking with his managers. And this work was being done kind of concurrently with my eye problem. and so when I was recovering from the surgery and I was able to work on the phone a little bit and I was working on this campaign and I got to know his managers and I was very very reflective during this time because when you're recovering from surgery from it's called a vitrectomy you really can't do much you have to sit in a chair and you have to put your head down and you There's a lot of time where you're kind of sitting there and you're thinking. And so I'm working on the phone and I'm talking to Nick's managers and Nick's managers tell me about the I'm type 1. And, you know, meanwhile, I'm sitting in this chair with my head down and I'm like, this is really kind of an interesting sign here. I'm learning about this organization. I'm working with Nick Jonas and I just came out of eye surgery. There's got to be a message there. Somehow, some way, you know, something is telling me something here. So I found out more about Beyond Type 1 as I was recovering and decided to give Thom Scher a call. And we set up some meetings and they asked me to be on the leadership council. And as I heard more and more about this organization, I just was blown away. absolutely blown away by the work that they were doing, the human element that was infused in every single thing that they were doing, the difference that they were making in people's lives and real tangible things, seeing photos of children that were benefiting from everything the organization was doing and just such a progressive human approach to this disease that I'd never seen before ever. And that's what I was missing. And that's when it just kind of, you know, it came to me that that is what I was missing all along was this human approach to the disease, a support system. I'm on the app every single day and just being able to sit and have a community of type ones right at my fingertips and being able to feel for the first time in my life that I'm not alone and that it's okay to be different because there are actually a lot of people just like me. I just hadn't found them yet. And, you know, I'm just so honored to be a part of it. I was a part of their fundraiser, and I just got the crazy competitive, you know, I got to raise as much money as I possibly can for this organization. I went with Sarah and Tracy to get the check here in New York. And the level of gratification it has brought me is, I really don't have the words to describe what they've accomplished in such a short time with this organization is simply awe-inspiring. And I just, honestly, I get so teary-eyed just talking about it because I think about all those kids who are diagnosed at such a young age, just like me, and being able to have this resource. It's such an incredible thing. It can make all the difference in the world in someone's lives and how they choose to, you know, move forward with the disease and something that I didn't have, it often, you know, makes me think like, well, what would it what would have been different for me? And I think, you know, a lot of things would have been not that I'm, you know, kind of looking back and regretting anything. Because like I said earlier, I think we all have our own journey. And we're all taught, you know, different things for different reasons. But it's such an incredible resource and I'm just so proud of it.

[00:32:18] Rob Howe: Well, and I think, you know, you touched on a lot of amazing things about Beyond Type 1, but I'll focus in on two that it's amazing to see how easy it is now to connect with other people like you and learn that there are other people just like you who are going through the same things. It used to be not as easy. And now, you know, Beyond Type 1 has created that platform. On the other side of that, for people who are lost and they have recently been diagnosed or they're off to a tough start because maybe the person who either diagnosed them or they're endo or whatever the case may be, it's just approaching things from too clinical of a perspective and not looking at the person. And oftentimes now, the first place they find now is beyond type 1 when they go and they look, they get on Google and they start to, you know, talk about living with type 1 diabetes and all the amazing people associated with it and people that I've met, you know, that are both inside the doors of beyond type 1 and, you know, just externally as ambassadors or just associates. And it's just, it's amazing. It's so great to see. And I think it's really doesn't get enough credit for being the amazing community of online T1Ds that it is. Like it's there's so much negativity about social media out there. And a lot of it is justified for sure. But one of the you know, some of the amazing untold stories are happening right there at Beyond Type 1.

[00:33:46] Jen Stilson: Yes. And it's just, you know, when you're having a weak moment or you've just been hitting lows all days or you've been high for a few days, You can go somewhere and you can put it, you can go to the app and you can put it up there and you immediately just have people supporting you, sharing very similar stories, providing advice, just listening. There's humor, you know, there's a lot of levity, there's a lot of, you know, there's every kind of a shade of emotion on the app. And it's just, it's such a soft place to land. And I think that that is actually, you know, one of the things that Nick Jonas said when he was creating the organization with the others is he wanted to create a place, a soft place to land. And that's really, to me, the best way to describe it. I just feel when I'm at wit's end and I'm frustrated and I don't know why, you know, I'm feeling a certain way or why my sugars aren't cooperating, I just have a place to go. And, you know, that never was the case because, again, you know, even through my 20s and 30s, I didn't, I knew of maybe one or two other type ones, but they, you know, I wasn't, I wasn't close to them. They, they lived across the country and it just never really kind of happened as, as a friendship. But now suddenly I've, I've got thousands, you know, so it's, it's pretty

[00:35:24] Rob Howe: spectacular. And for you now, you know, outside of, uh, obviously like the personal, um, you know, benefits and feeling connected and being part of the community. From a clinical perspective, your actual treatment of your type 1 has improved greatly as well.

[00:35:42] Jen Stilson: Yes. So, you know, again, another silver lining out of the eye surgery was, you know, my decision to, you know, obviously be a part of beyond type 1, which helped enormously in my feeling being confident and accepted and comfortable with the disease and starting that kind of metamorphosis of facing the disease and wanting to take care of it better. So I went to my endocrinologist, had a conversation, and we, for the first time in my life, I was open to starting pump therapy. And, um, you know, I, I just, I just decided it's time. Um, I've, I've kind of had enough of this, this shroud of denial and, and, um, I'm, I'm ready to kind of embrace this thing and, and start pump therapy. And I started, uh, on a CGM as well. And that was last, uh, I believe it was last July. I started both. And sure, scary. It was bumpy. It was a little bit of a bumpy ride in the beginning. And I'm still learning a lot and figuring all of this out. But my numbers have gone from a 9.5 A1C to a 6.6 A1C. And I can't even tell you, you know, I never thought I would be that person that just would geek out over my A1C numbers, but I'm geeking out.

[00:37:21] Rob Howe: Yeah. And I mean, what a change, right? It's so crazy how, because I've had a very, not as drastic maybe, but a very similar story of my own. Since I've started diabetics doing things, I went from an A1C of 7.6 to 6.1. So I don't mean, it really didn't. And I think a friend, I put a long like Facebook post up a few weeks ago and a friend asked like, well, what do you, what do you think was the main trigger? Because I live a pretty healthy lifestyle. And even though I've dialed it in a little bit more, it's not, it's not like I dramatically turned the way I live my life around. And I just said, you know what, it's just a conscious, mindful, you you know, things like maybe, maybe testing my blood sugar one more time per day, maybe dialing in, you know, being a little bit more liberal with, you know, adjusting some of my pump settings, going to my doctor more often, like those aren't things that you say, like, oh, wow, yeah, that one thing did it. It's just like a little bit every day. And, you know, sort of that, like, all good things come from compound interest, you know, just a little bit, a little bit of heightened awareness on your on where you stand every single day, or trying something new, and implementing it, or just feeling encouragement from the community. All those things play a huge part in, you know, actually improving the quality of your life.

[00:38:41] Jen Stilson: Yeah. And, you know, something that was so overwhelming to me upon my diagnosis, I thought that, you know, I was just going to have to flip everything that I, you know, was accustomed to doing. I'd have to flip it just, you know, dramatically to see a difference. And to your point, that's not the case. It's just little tweaks here and there. So, you know, I think we get in our heads about it much more than we need to. But it is such an emotional hit when you're told you have a disease, when you are told that you have a chronic illness and hearing all of those voices telling you, you know, oh, this is what could happen. and it gets into your brain and it's very hard to let go of it. But, you know, I think both you and I are here to say that it's really just little things that you tweak, you know, over a longer period of time that truly, truly make a difference. But it all starts, the foundation starts with, at least for me, a supportive community of others who know exactly what it's like to have type 1. And, you know, you try to explain it to friends and family and, you know, they do their darndest to listen and to try to understand. But unless you have this disease, like any other disease, you just don't know what it's like. So to be able to have that foundation of support from people who know exactly what it feels like when you're having a crazy low or when you've eaten a big meal and you're skyrocketing. You know, it's just, it's different. It's really an important thing, I think, that, you know, any newly diagnosed person has to, you know, face.

[00:40:52] Rob Howe: It is. And, you know, like you said, our, you know, our loved ones and friends do their best to understand it. And sometimes I, you know, over the years, I've had to soften my edges a little bit on explaining it because it is hard to explain and it is hard to understand. And most people are just genuinely curious. Yes. But, you know, like even, you know, today's my mom's birthday. So by the time I publish this, it'll be, you know, a few weeks from now. Happy birthday, Rob's mom. Yes. Happy birthday, mom. Um, so we, you know, we went to, we went to brunch today and I ate more than I normally did. And I had some sweet, uh, you know, some sweet things cause it was, you know, it was brunch for my mom's birthday. I might've wanted to splurge a little bit. And, you know, now I know I'm gonna have to take a nap later today because, um, you know, I'm just exhausted from, uh, you know, from a little bit of a blood sugar spike, even though my numbers have been relatively normal, it just takes more energy. And that's hard to explain to somebody. It's like, Oh, like, you know, a meal can like put me down for half an hour. You know what I mean?

[00:41:52] Jen Stilson: Yes. and it's it's true I mean you know my husband I always say well you know I'm just gonna go take a nap and he's like okay you go do that but I know he's thinking like well we didn't really do anything today why are you taking a nap but it's because I you know ate something a little a little sweeter or you know I'm metabolizing things a little differently today than I did a couple days ago based on not exercising today versus a couple of days ago. You know, it's just a moment-to-moment kind of temperature on how you're feeling. And I think that that's very hard to explain to people, you know, just based off of what kind of physical activity you're doing and what kind of food you're eating, you know?

[00:42:40] Rob Howe: Right. No, and it's just a balance, right? Yeah, absolutely. Every day is a unique challenge. I think when I'm talking to either younger people with diabetes or newly diagnosed people, it's just like, hey, it gets better, but every day is a challenge. It's just there will be something different. Something will change. And just when you think you have it figured out, there runs a chance that something could surprise you.

[00:43:06] Jen Stilson: Yes. It's a nasty little man that way. It just decides one day it's just going to drive you nuts for no apparent reason. Right.

[00:43:17] Rob Howe: And that's something that I think all type 1s can really identify with, but very difficult for people without it. Absolutely. So now, you know, you've gotten your A1C to a level that I'm sure you're much happier with. You're more open. You've joined the Beyond Type 1 team and been a part of this amazing sort of revolution of the humanization of Type 1. What are you hopeful for as you move forward living with Type 1 after all these years?

[00:43:51] Jen Stilson: What am I hopeful for? Well, I know that I'm grateful for so much. And out of gratitude, obviously, comes hope. So, you know, I'm blown away by the development in technology. I'm still in awe of my devices. I look at them every day and I just want to kiss them because I just can't believe that we've come so far. And like every type 1 diabetic will say, of course, of course, of course, of course, I want a cure. but I just want to see Beyond Type 1 grow. I want the stigma of diabetes to go away. I want people to understand it. And, you know, as the Type 1 community, we have quite a task in front of us to do our best in educating people who don't know about it or don't understand it, just in our own personal way, as I do. Now the summer's coming, and I'm going to wear my CGM on my arm proudly, and I hope people ask me what it is. And if they don't ask me what it is, I might tell them what it is. I might become that person, which I never in a million years thought I would be. But I think that it's just piece by piece, step by step, each one of us trying to educate the world about diabetes and embracing it to, you know, as much as we possibly can, that's comfortable to us as individuals, making sure that the newly diagnosed are supported and, you know, people like me can do everything possible to make them feel welcome and make them feel like, you know, I had a thought exactly like theirs when they were diagnosed. and that we can all just really band together, work together, and create the awareness that is so necessary. You know, this thing is a beast, but it can be tamed. And with organizations like Beyond type 1 and each one of us raising our voice and supporting one another, I think, you know, the future is so bright for all of us. And, you know, I'm here, you know, I'm sitting here 30 years in with this disease and I'm great. And it is possible to live a full, happy, healthy life with this disease, but you just have to work a little harder to find the people that can help you kind of get through the bad times and really celebrate the good times with you.

[00:47:08] Rob Howe: I couldn't agree more. And I think finding those people that can help you has never been easier. And that's what makes me, I'm super grateful for the community because of that. Because even if it's just a conversation or even if it's just a message or a comment or, you know, whatever the case may be, a small interaction, an encouraging word. I always try to remember that, you know, not everybody gets an encouraging word about their diabetes every day directly to them. And, you know, whenever I can be that for somebody, I know that that comes back to me, you know, a hundred times over. It's just, you know, the amount of good coming out of the type 1 community right now, especially, I think it's never, it's at an all time high and it's, and it's going higher and I'm very grateful for it. Like you said, and then that's what makes me hopeful for, you know, of course I'd love to get a cure just like you. Um, but for that time until that comes, uh, you know, we're in this together and we're

[00:48:14] Jen Stilson: stronger because of it. Yeah. And I can't even tell you, you know, how many invaluable tips and pieces of advice I've received. You know, just little, little things like, you know, what you can do to keep, you know, your sensor attached just a couple days longer. You know, things that you can't find anywhere else. You know, from that to just helping someone through a really dark time who just doesn't want to even take their insulin because, quote unquote, what's the point? You know, I see it all and I feel so fortunate to be able to impart any sort of wisdom or experience to a fellow type 1-er to make their situation just a little bit better because we are going to get to a cure. But in the meantime, we have all of these resources and all of these tools at our fingertips. And, you know, I think nobody seems to understand how far the technology has come more than me because I didn't even realize, you know, over the years of mine just kind of keeping my head down and doing things the way I'd always done them, I looked up and then suddenly there's this thing called a CGM, you know? And that stuff is just going to continue to develop and develop and develop until we get to a point where we really aren't going to have to think about it nearly as much. And to me, that's something, you know, I'm so grateful for and just gives me so much hope. and, you know, pride in being a part of this community because we really are pretty strong people. We go through a lot on a daily basis and it just, it makes me so proud to be able to

[00:50:22] Rob Howe: be a part of this community. I'll echo that a hundred times. I'm very proud and fortunate and grateful and lucky to be a part of this community. Jen, you mentioned getting in touch with you, and I want to focus on where they can find you online, where our listeners can find you if they want to reach out to you. But I want to do a quick lightning round kind of before we get to the end of that.

[00:50:49] Jen Stilson: Okay.

[00:50:50] Rob Howe: So I know I'm going to put you on the spot a little bit here, but you have such a great story. and I think a very unique perspective. So I want you to – I'll give you – the first question is going to be around your time working on Letterman. So give me your – what's your go-to David Letterman story that you tell?

[00:51:14] Jen Stilson: Oh, boy. There are a few. But I think the one that's just sticking out for me right now is, you know, occasionally the staff members were asked to be in sketches. and the one that I'm most proud of, I was asked to don a squirrel suit and dance with Dave in a jail cell and that was for a viewer mail piece. So that was quite an experience. I was proud to tell my parents about that one. Yeah, check me out tonight, Mom and Dad. I'm in the squirrel suit dancing with Letterman

[00:51:55] Rob Howe: in a jail cell. That video's got to be on YouTube somewhere, deep in the YouTube archives, I imagine,

[00:52:02] Jen Stilson: right? Deep, deep, deep in the archives, I'd say, yes. That's fantastic. And now, and I think too,

[00:52:10] Rob Howe: for number two, just on a totally different side of the spectrum, I know you shared a story about working with Nick Jonas and his people on MTV. What's your go-to Beyond Type 1 story? What's your favorite thing about uh you know the last few years uh for beyond type 1 in particular

[00:52:32] Jen Stilson: um i would say it was was collecting the check with sarah and tracy for the um the revlon love challenge we came in uh fourth place and we got a fifty thousand dollar check and um there was a a party downtown and we went and we collected the check and, and, you know, I'd worked really so hard to, to raise the money and, and I loved every moment of it, um, as, as did everyone else. And it was just such a great feeling to be able to hold that giant check in my hand and feel like I was such a part of something that was so meaningful to lives.

[00:53:23] Rob Howe: That's so awesome. And I think I'd encourage anybody who's never been a part of like even a race or a walk or any sort of type 1 fundraising event, just go be a part of that and be around the people that are involved because it's such a rewarding feeling even more than, you know, You don't have to go pick up a $50,000 check to feel like you're really making a difference.

[00:53:44] Jen Stilson: Absolutely not, no. And that's certainly just being a part of something that you know is going to affect people in a positive way. And oftentimes that's just showing up and showing your support and lending a hand however you possibly can. I can't describe what an amazing feeling it is. It just comes back to you again and again and again.

[00:54:12] Rob Howe: Well, Jen, thanks so much for coming on the show and for reaching out a couple weeks ago. It's been great to kind of email with you back and forth, you know, as we found our time to chat and, you know, learning more about your story. It's so inspiring, and I'm so glad that we were able to do it.

[00:54:31] Jen Stilson: Oh, it's been my pleasure. Thank you so much for making some time. And, you know, if anyone wants to reach out to me, I'm more than happy to speak with anyone at any time about any issue, diabetes related or not. Just, again, happy to be a part of this community and help in any way I can.

[00:54:54] Rob Howe: And for those or for our listeners who are more social media savvy, any Twitter or Instagram profiles that you would recommend they reach out to you on?

[00:55:04] Jen Stilson: Absolutely. So Twitter, I'm Stilsonian, S-T-I-L-S-O-N-I-A-N. And on Instagram, I have a diabetes specific account, which is in like slin. That's I-N-L-I-K-E-S-L-I-N. and then my regular handle is Stilsonator, S-T-I-L-S-O-N-A-T-O-R. And then I'm also on Facebook under Jennifer Stilson Fleece.

[00:55:42] Rob Howe: Your mastery of puns is like, that's not like my favorite thing. Like I hate that we got to this like right at the end of the interview because that's so fun.

[00:55:52] Jen Stilson: And if you want a real treat, check out Crocs in Socks on YouTube. that's my work as well that is a parody of Kesha's TikTok about people who wear Crocs

[00:56:05] Rob Howe: oh goodness well I have my work cut out for me to include all that and I'll include all that in the show notes as well as see if I can find that squirrel dancing in the jail cell with David Letterman

[00:56:17] Jen Stilson: oh boy yeah good times

[00:56:22] Rob Howe: great well thanks so much for coming on the show Jen and we will talk to you soon

[00:56:26] Jen Stilson: thanks for listening to diabetics doing things subscribe to our newsletter for weekly emails and behind the scenes content and if you or someone you know has an amazing story to share send an email to rob at diabetics doing things.com