Diabetics Doing Community with Mary Lucas

[00:00:00] Rob Howe: Welcome to the Diabetics Doing Things podcast. We're back with new episodes in 2017 telling the amazing stories of type 1 diabetics across the world. I'm your host, Rob Howe, and if you'd like to get involved with Diabetics Doing Things, all you have to do is shoot me an email or reach out via Instagram. Before we get into this episode, I want to give a major shout out to Beyond Type 1. If you're involved in the T1D social media community, you've definitely run across them, and I'm just such a big fan of all the work they're doing, inspiring our type 1 diabetes family to live beyond. Check them out online at beyondtype1.org. That's beyondtype1.org. And if you want an idea of the kinds of stories they're telling, just search hashtag livebeyond on your social media platform of choice. Okay, back to the episode. Welcome back to Diabetics Doing Things. We've got new episodes, and today my very special guest is Mary Lucas, calling from Los Angeles. Mary, how are you?

[00:00:58] Mary Lucas: Hi, I'm good. Thanks, Rob. How are you?

[00:01:01] Rob Howe: I'm doing fantastic. Really excited that you've joined the show today. Been looking forward to this interview for a while.

[00:01:08] Mary Lucas: Yeah, no, I'm super excited. I've seen a lot of what you're doing and listened to a lot of your podcasts, and I'm a big fan. So I'm super excited to talk to you a little bit today.

[00:01:21] Rob Howe: Well, look at us, just mutual fans of each other. So for those of you who don't know, it's likely that you probably have communicated with Mary in one way or another in social media because of your position with Beyond Type 1.

[00:01:37] Mary Lucas: Yeah, yeah. I definitely interact a lot with the community and sort of everyone out there who reaches out about Beyond Type 1. I'm the community partners and programs manager. And a lot of that comes with just sort of talking to people in the community and people email in asking, you know, how they can be involved with Beyond Type 1 or they want to do a fundraiser or become an ambassador. And so I sort of help all of those requests. And in the process, I get to meet a lot of really great people and hear a lot of great stories. I've met some of my, like, people I consider my best friends now, just even through, like, emailing or social media, because it really is such an amazing thing to be able to connect with people all over the world just on the internet and, you know, through social media and email and all of that kind of stuff. So it's super cool. And I love talking to people and meeting new people. And, yeah, so it's fun.

[00:02:42] Rob Howe: Well, I'm super nerding out. I can't wait to talk about and get into those individual stories. But another thing that's interesting and I think unique about you as well is not only do you work for Beyond Type 1, but you are a Type 1 diabetic. So what's that like?

[00:02:59] Mary Lucas: You know, it's a lot of diabetes, I'll be honest. because yeah I wake up and got to take care of my diabetes and I go to work and help other people out with theirs and anything that they're facing and even different issues that they might be facing with their diabetes at the moment and then I go home and most people after work go home and sort of get to have a break and not really do any work or anything like that but of course as you know type 1 diabetes is a full-time job so it's kind of like I just never get the off moment from diabetes but I really like what I do and it makes me feel really good that I can do something that's giving back to people and helping other diabetics other type 1s out there which is why I don't sort of mind being in such a constant stream of diabetes because I really, I love being able to help people and it's such rewarding work that I'm doing. But yes, it's definitely a lot of diabetes.

[00:04:12] Rob Howe: That sort of diabetes overload all the time, right? Just when you think you get out, they pull you back in.

[00:04:19] Mary Lucas: Right. Exactly. Exactly.

[00:04:21] Rob Howe: Well, I think, oh, sorry, go ahead.

[00:04:23] Mary Lucas: Oh, no, I was just going to say, because of it, because I am working in the diabetes field, I've gotten to first, you know, make great relationships with amazing people. And also, I have been able to be exposed to, you know, a lot of different products and a lot of different things out there. I'm well aware of, you know, studies going on. And so working in the diabetes field has been great just because I'm learning and finding out about a lot of things that I might not. Otherwise, if I, you know, if if my day job wasn't to go find diabetes products or or things like that. So it's definitely it's definitely cool.

[00:05:03] Rob Howe: It's almost like you have that like work life fulfillment that everybody's searching for. It's like you found a really nice mix.

[00:05:10] Mary Lucas: Yeah, yeah, it's it is really nice, actually. Um, and yeah, I, I guess, you know, people or a lot of people want to do something that's meaningful, um, and that they can be happy with and sort of, you know, happy at the end of the day about the contribution they've made, you know, to the world. And I, I'm one of those people I like, uh, you know, it's hard work and we have a really small team here and we move quickly and we're doing a lot, but it's really rewarding work. Um, which is, which makes it really fun.

[00:05:42] Rob Howe: I love that. and I think community for T1Ds over the last few years because of Beyond Type 1 because of all the work you guys do which is all great, it's fantastic I think because of that the community has grown and there's so much more of an inclusive bunch, specifically on social media, I think it's the most visible piece but it's connecting people in a way that wasn't available before So, you know, I've had a lot of guests on the show say, you know, I didn't have any type 1 friends until I got on social media and started searching hashtags. Yeah. And, you know, then I found that there's all these people that are going through all the same things I'm going through. And, you know, talk about what that's like, you know, just sort of see that unfold.

[00:06:33] Mary Lucas: So it's funny because I'm one of those people that didn't really, I wasn't really involved in social media, in like diabetes social media, certainly. When I was growing up, I knew a few type ones just from doing, you know, philanthropy work in the area as I was growing up. But it wasn't until I really discovered social media and finding that there's this amazing supportive community out on there. And, you know, it wasn't until then that I was really like, wow, this is amazing. Like I can use this thing to connect with other people that I would have never met before, which is exactly what's what's happening. And, you know, in terms of how we use it for Beyond Type 1, we, from the very beginning, recognized that social media was going to be extremely important in reaching people. I think that in the chronic illness space and in the diabetes space, social media is often neglected or thought of sort of as an afterthought. and we really as we were as we were building beyond type 1 wanted to really use social media and use the power of social media and be able to find people and connect with people all over the world and luckily that's what we've been able to do so far our facebook page has over 600 000 fans with the largest type 1 diabetes facebook page out there we feel pretty confident saying we're the largest type 1 diabetes organization across all social media. I will say that does not include diabetes, both type 1 and type 2, because the ADA is both type 1 and type 2, and they're bigger than us on social because there are just more type 2s in the world.

[00:08:25] Rob Howe: Yeah, they just have a nice advantage of like 90% more people.

[00:08:30] Mary Lucas: Exactly, exactly. Exactly. But our audience really is so global. You know, two programs that we have that help connect people all over the world are our snail mail club, where anyone can sign up, anyone with type 1 can sign up for a pen pal. And we match them based on age, if they have a gender preference, and some different interests, and we match them up. And each kid gets a little starter kit and information so that they can write to each other. And that's been a really exciting program that we have. And as of right now, we have about 4,000 users in 60 countries, which is super exciting. And then also on top of that, we have our Beyond Type 1 app. And that's, in case you haven't heard of it, it's sort of like a social media app just for Type 1s. And you can log on, put in your information, where you're located, your connection to type 1 and you can ask questions, get advice, post events, great things like that. And that has grown really fast. And as of right now, we have about 12,000 users in over 180 countries. So yeah, it's a lot. And so it's great because social media really has allowed us to do that. And we would not be the company that we are without social media and without using different people around the world and their networks. You know, we don't have offices all over the world. We have our one small office in California, and we work remotely with a lot of people because that way we can leverage their networks on the ground where they are. You know, for example, we have people we work with in New York or the UK, even a woman in India. So it's great to be able to use other people's networks and connect with them in a way that was not possible before the internet was launched.

[00:10:29] Rob Howe: Well, it's fantastic. I think it really is sort of redefining cause marketing and community relations with – excuse me, specifically within, I've had a lot of caffeine, so all my stuttering is going in, but specifically with, you know, diseases and, and I think diabetes is very rare because people are able to share what they're going through in a way that it's just sort of an everyday thing. You know, you talked about diabetes being 24 seven for you. It's 24 seven for all of us. And I think the, you know, even today I saw a couple of posts from some guests who had been on the show about having a low blood sugar in the middle of the night. And, um, and then, you know, they had, you know, five or six people coming in, commenting and talking about their, you know, experiences and just offering that encouragement. And I think, you know, without social media, that, that doesn't happen. That interaction is, is much more, you know, contained. And I think now that it's more out in the open, that's helping education, it's helping awareness. Um, and it's helping, you know, Organizations like Beyond Type 1 who have really done a really great job of including everyone and spreading that message of living beyond, I think that's the way it should be used. There's so much talk about the negative aspects of social media, but that's one of the positives. It's really tangible, and I feel very fortunate just to get to be a part of that on a daily basis.

[00:12:00] Mary Lucas: Yeah, absolutely. absolutely it's funny because I think a lot of times we take things like social media or the internet for granted um and it's it is sort of great to just realize like oh wow we are so lucky that we're able to have these communities uh because there are places in the world you know where they don't have internet access and they don't have phones for social media and it's really amazing that, you know, you and I and so many other people are able to be on social media, sharing our experiences, getting help from getting help or advice or encouragement from other people, because I know that's, that's really what helps keep me going is the community. I, you know, where I live, I don't have any type ones who, who are sort of like my best friends that live around me. And so I rely a lot on, you know, or not, I guess, I don't know if rely is the right word, but both rely and appreciate so much all of my friends on social media and things like that, who aren't living close to me, but who know exactly what I'm going through in ways that, you know, people who, you know, like my, my friends or people who don't have diabetes can't. And so, yeah, we are so lucky to be living in an age where it's possible.

[00:13:22] Rob Howe: We are. We're very fortunate. I want to talk a little bit because you said something that was very similar to my sort of story a bit earlier about not being as involved with diabetes social media. But I think that for me, at least, was I wasn't very open about my diabetes. I just, it was, it was something that I dealt with personally. It was something that I obviously like dealt with every day, but I didn't want to be treated different. And I didn't feel like it was something that I had to bring out into the open. I don't know, was it the same for you? And how do you feel about it now? You know, that you've seen the power of the community? You know, what do you

[00:14:01] Mary Lucas: think about that? Yeah, it's funny. My, my perspective, uh, and thoughts about diabetes have really changed over the years. I was diagnosed when I was seven. And so I don't, you know, I don't really remember a lot before diabetes. And when I was growing up, it was just something that I dealt with. But I do remember, you know, by the time I got to sixth grade, that's when I got my first insulin pump. And I just remember thinking, or being so self-conscious about like the tubing coming out and people seeing that and wondering what it was and, you know, I don't know, making fun of me or things like that. So I tried to keep it pretty quiet and, you know, just kind of hide my insulin pump. And it was sort of the same through high school, I would say. People were definitely aware that I had type 1. I was, I think, the only person in my school for a while with type 1. And people were definitely aware just because my school was so small that I had talked about it before and people knew, but I didn't make a big deal out of it. And, you know, I played sports and my coaches knew and, you know, my dance teacher knew. And it was always sort of hard if I couldn't do something like I couldn't, you know, get in for swim practice while, you know, because my blood sugar was low or something like that. And then you're sort of sitting on the side and everyone's looking at you. And, you know, it's, it's hard because as much as you want to be like, empowered and okay, it can be sort of difficult when, you know, you feel different. And that's definitely how I felt a little bit as I was growing up. And even I don't know, through college, I just didn't really, I mean, I, you know, I told some people, but I didn't really acknowledge it. I wasn't wearing devices all over the place. You know, I wasn't talking to that many people about it. And after, sort of after college, and since then, I've, I discovered the chronic illness and diabetes community on social media. And it was a lot because of that, because I saw other people and what they could do that I was like, yeah, okay, like, I can do this. I'm like, why shouldn't I talk about this? Why shouldn't I wear my devices and talk to people about them? And I sort of just had a moment. And then I was like, yeah, you know what, I'm I'm gonna try wearing my Omnipod on my arm and see what people say. And it was nerve wracking for a while. I still sometimes am, you know, self-conscious if I have my Dexcom on the back of my arm or something like that. But it was, it led to some really good education moments and actually some great opportunities to connect with people. And I would have co-workers asking me, you know, what's that on the back of your arm? And that's just an opportunity to use to educate someone. It's the same, you know, when people make rude comments about diabetes, it's hard to to hear and to understand. But I always try to look at those kinds of things as teaching moments to tell people about type 1, and what it is. And, you know, sort of show that I can embrace it. And so now I, you know, especially after finding the community on social media, and then working for beyond type 1, I'm so confident in my diabetes, I am totally fine walking around with, you know my my Dexcom on one arm and my insulin pump like hanging off me and I don't mind talking about it um so I don't know I've I've definitely like changed my viewpoints and attitudes a lot throughout the year the years uh but ultimately I'm glad that I've sort of been able to embrace it and use it to both like inspire people I guess to embrace their diabetes and to educate people who might not know as much about it in the process. And that's the thing, I think,

[00:18:16] Rob Howe: especially like muggles, like they are mostly just curious, I think, and they just have a lack of awareness. But for me personally, I used to, I don't, I'm not, I'm pretty stoic most of the time. It takes a lot to get a rise out of me, but it used, I used to be very touchy about my diabetes whenever people would ask or be like, oh, that, you know, that looks gross or whatever. And it was like that happened like twice when I was like 17 you know so it was obviously not like an everyday experience but I would get really defensive yeah you know through the years it's like you start to make peace with yourself a bit more but then also realizing that if you're not exposed to that every day you probably have no idea about what a person goes through with type 1 and so I love the idea and the opportunity to treat it as a teaching moment and just a sharing and bringing somebody into your world. And with that, I want to talk about specifically some of the stories that you've encountered at Beyond Type 1 just throughout social media and through your interactions that really stood out and that kind of left you saying, like, wow, we're really doing something here. This is really important. What are some of those impactful stories? I know I'm putting you on the spot, I feel like you probably got one or two in the bag.

[00:19:37] Mary Lucas: You know, I do have some specific stories that I can tell you about. But I will also say that occasionally, you know, we'll get emails from parents or people just thanking us for the work that we're doing. Or I met a woman in person at the Friends for Life conference last year who just came up to me and was practically crying because she was just so happy about all the work that we were doing and thanked us for all the information. And, you know, I love moments like that or when I can see. I remember this. We got a video of this one kid playing with his Percy snail, his stuffed animal, Percy the snail. And he said, Percy has an insulin pump and I have an insulin pump. And just seeing that and seeing how excited this kid was about this little snail with an insulin pump was really heartwarming. But I do have one sort of story that is my favorite. And that is a while ago, I would say sort of back sort of near the beginning of Beyond Type 1, we got an Instagram submission from a little girl named Eladia. and I saw it and I was like, you know, she looks really familiar. And I saw from her statement that she was a model and actress working in New York. Um, and she was, I think, you know, eight at the time, eight years old. Um, and it had type 1 for a year or two at that point. Um, and I, so I saw that she was a model and actress and I was like, you know what, I'm going to look her up. And I looked her up and I realized that she had done work for the school that I went to, New York Parsons School of Design. She had done work for walking in their fashion show. And then I realized that she was actually one of two little girls that I had been considering to use for my own thesis collection at Parsons. I designed, I was, I specialized in fashion design and children's wear. And so I created a collection of, you know, know, eight different looks for a six to eight year old girl. And it just so happened at the time that I picked the other girl because she fit the she just sort of fit what I needed a little bit better. But seeing this, this photo come in, I was like, Oh, this is too weird. So I reached out to her mom. And I was like, I know this is crazy. But I just wanted to, like, say hi, and let you know, it's sort of all this. And I remember seeing you and I went to Parsons and all this. and from that actually this amazing friendship blossomed between you know both the mother and I and the little girl Eladia and it was it was amazing because we talked for a while on email and on the phone and saw them through social media and all that but then I last year I went to New York for work for a little bit. And I got to meet with Eladia and her mom for lunch, like actually in person. And it was amazing to see them and to just meet with them in person and to give them hugs and spend all day with them. And that was amazing. But the sort of even more exciting part on top of that is that I had found out the night before that Eladia was doing a presentation on one of her heroes, who was Miss Idaho 2014, Sierra Sandison, who I'm sure, you know, at least some of the listeners on your show probably know about. She was Miss Idaho 2014 and wore her insulin pump on stage, both in the Miss Idaho competition and at Miss America. And since then has just been a wonderful role model for, you know, younger girls and women with type 1. but in any case I had found out that a lot he was doing a presentation based on Sierra and it just so happened that Sierra was in New York and so I texted her and I was like if you're not doing anything like would it be okay would you mind just filming a cute little video or something really quick for a lot I'm going to meet her tomorrow and Sierra was like wait I'm in New York and I can come to lunch tomorrow. And so we worked it out that Sierra got to come to lunch, but as a surprise. And so we were, Eladia and her mom, Evelina, and myself and my mom were all at lunch. And about 10 minutes later, Sierra came in and you should have seen the looks on their faces. I mean, they just, they were crying and just so, so happy. And so it was, it was an amazing moment where I could do something for this little girl that meant so much to her. And that, you know, I had just met her just because of social media and from this little girl submitting an Instagram and just sort of everything that's come after that. She was also having a really difficult time at school with sort of people understanding type 1. So we got to arrange it so that Sierra actually got to go and present to Eladia's school and talk about diabetes and your flaws and how they actually make you unique and who they are and embracing all of that. And then another sort of great moment that happened was this past September, Miss, I think it was Miss New Hampshire, Caroline Carter was competing and competing for Miss America. And she wore her Dexcom and her Medtronic pump on stage. And we actually got to send Sierra and Eladia to go watch the Miss America finals. And so they got to go together and meet a whole bunch of exciting people and take photos in front of the wall and on the red carpet. it. So that's been really exciting. And that's just, I guess, sort of an example of a much longer example of a story that's come to me that's really sort of evolved and, and turned into something else. Just, just, yeah, from from an Instagram post, basically. That I think like saying that

[00:26:12] Rob Howe: that's incredible, totally undersells how powerful that story is. It's like almost magic, right? Like so many things had to happen at the same time just for that to go and uh that you got to be

[00:26:24] Mary Lucas: in sort of the intersection of all of that yeah exactly it was it was really amazing um and again one of those things where it was like wow I I really feel like I'm helping you know and I'm helping this little girl just by you know uh helping her meet sort of one of her heroes uh And that's just, you know, how often do you get to do that? It's, it's pretty cool. And, you know, having having little moments like that are really great. And they're sort of what helps keep me going. For example, like one girl told me that she tried putting her Dexcom on the back of her arm because she saw that I had done that. And when I saw that, I just my heart totally melted. And I just thought that that was the sweetest thing. um so I get to I don't know yeah I have I have some moments like that that are really really just wonderful and heartwarming I guess you could say they are and I think like you know

[00:27:23] Rob Howe: I still am blown away that people would take time to email me and talk about you know diabetes or nutrition or sports or anything um and I just I email is normally so terrible and it's like you know, such a, you know, this burden and, you know, but it's totally different when, um, it's a connection and it's like genuine and somebody is, you know, either, you know, saying thank you or just opening themselves up. And I think, um, you know, you talked a little bit about Sierra talking to, um, you know, girls at, at the, at a lot of your school about empowerment. Um, something that I've encountered quite a bit is how much type 1, especially for younger kids. And I'm sure you went through this yourself, being diagnosed at a younger age, because I was diagnosed when I was 16. So I was pretty much, you know, I pretty much figured out regular life at that point. Enough. Yeah. Enough anyway. I could drive. That's about it. But, you know, it forces kids to grow up, you know, and they, these little adults, you know, anytime I go talk to a group of type ones that are under, you know, 13 or something, I'm just blown away by how mature they are. and how differently they see the world than other kids. And what a big part empowerment plays in that.

[00:28:42] Mary Lucas: Yeah, absolutely. I mean, I'll say I definitely feel like I had to grow up faster than other people. And that's just because I had an extra responsibility from a young age. and it is amazing for me to see all these kids now who are so empowered with their disease. And, you know, of course, for every one of those kids that's empowered and ready to fight for their disease, there are also kids that, you know, aren't so much like that and might be a little bit more shy or reserved about it. And that's where we try to really help people or inspire people to embrace it and to make it something that's not a negative, but that is a positive. It's, you know, it can be, it's really easy to see diabetes in a negative light. and I think that especially for kids if they can take something positive out of out of it whether that's knowing that they're unique and special or you know that a disease isn't necessarily a flaw but it's something that you can embrace and use to your advantage so whether it's that or whether it's you know they they get a pen pal and they're excited by meeting another type 1 kid that's definitely something that I don't know, like I try to, to facilitate and nurture, I guess. And it is also, you know, important to be on type 1. I know that, like, when I was when I was a kid, I definitely had some moments where like, I remember really distinctly in fourth grade, we were watching a video in PE. And they said, you know, sugar makes you fat and causes diabetes. And like everyone in the class turned around and looked at me and I was just like, no, that's not true. But I sort of just melted and, you know, into my seat and didn't really want to say anything. And so I definitely was a little more reserved as a kid. But, you know, I also know kids with diabetes who would turn to their classmates and be like, no, that's so wrong. What are you talking about? And just sort of like come out and tell them all about diabetes. And I love that. But I love it when I can see people doing that, and especially kids.

[00:31:10] Rob Howe: And I mean, how important is that for a kid, any kid, to learn to be your own ambassador? Yeah, absolutely. And to have that knowledge and say, I know that I didn't cause this, and that sugar didn't cause this. And we all get tired of hearing all the same misconceptions about, oh, you don't look like a diabetic. I got maybe one of my favorite ones the other day somebody said like oh you don't look like a diabetic I look like a diabetic and they like slapped their stomach a little bit and I kind of laughed I was like you know this is funny and we all deal with that in like our own way but for kids like so important to know and I feel so good about like the idea that our diabetes educators are out there whether it's like JDRF or just at the hospital or you know ADA or beyond type 1 who are doing such a great job of teaching that this is not your fault. This is not, you know, you couldn't have planned, you couldn't have done anything for this. Um, and I think that's tough for parents too, because you know, uh, that side of things is, is always tough.

[00:32:16] Mary Lucas: Yeah, absolutely. And I, I, I think that it's, yeah, it's tough for both the kid and the parent, um, in totally different ways, which is really fascinating. Um, and when I was younger, you know, we didn't have Dexcom Share and Nightscout and all of those kinds of things. And so my mom just sent me off to school and checked in with the nurse, you know, I, but now it's, you have these, so many parents who are on their kids' Dexcoms and constantly talking to the nurse and all of that kind of stuff. Cause I know that it's, it's such a, I mean, I don't know, cause I'm not a parent of a type 1, but I can just see from seeing all these parents or even, And, you know, from seeing some of my parents' experience, it's hard for them and it's hard in a different way. And I think a lot of times people, parents wonder if they did do something to cause this. And, you know, is it like, oh, no, was it me? Do I have something in my genetics that did this? Like, if I had never had this kid, they would have never had diabetes. So is it my fault that they have that? But, you know, it's I think that parents sometimes get, you know, put a little bit of the blame on themselves. And that's always sort of tough to see because, you know, that's not the case with with type 1. It is, you know, genetic and you can't cause it yourself, as you know. And I think especially it's so important for kids to know that and be confident in that, because otherwise, you know, you could have kids, a bunch of kids sort of bullying you and looking at you and going, well, no, what are you talking about? you're wrong. Like diabetes is caused by sugar. And if you don't really know, and you're not sort of empowered, you could kind of be like, okay, yeah, I'm just not going to talk to you right now and just think whatever you want. Cause I don't, I want to avoid confrontation. Um, but you know, I always like to see when, when kids are empowered and know about their disease and when they're not blaming themselves and when the parents aren't blaming themselves. Um, so yeah. Yeah.

[00:34:16] Rob Howe: no yeah it's that i mean i you hit the nail you know multiple nails right on the head and i think like you know the biggest one is that like and i tried to tell this to a teen panel at type 1 nation last year was like honestly like junior high kids are the worst like you're never you're never a worse version of yourself than you are in like seventh or eighth grade so um you know how difficult it is to like to deal with that from a diabetic standpoint i think you're right Like having the education and really that firm stance to say, no, I didn't cause this. And I know that for a fact because of, you know, because of these resources, I think is so important. And I'm glad we have those. And, you know, you make a great point about the technology when, you know, when I was, I honestly am thankful that there was no, you know, Dexcom or any, like my parents couldn't be on their phone, like monitoring me when I was, you know, at school or something having a tough blood sugar day. because some days, as you know, like you can't explain it, you know, eating the same thing, had the same amount of exercise, whatever the case may be. And it's just, just a tough day.

[00:35:23] Mary Lucas: Yes. Oh, and it's so frustrating when, yeah, if you have someone like on your Dexcom Share and they're asking you all these questions and all this stuff and you're like, I don't know, like, I really, I don't know, you know, and yes, I've troubleshooted with my doctor and yes, I'm doing this and this and this, and I still don't know why things are, are weird. And sometimes, yeah, sometimes you just, you get a day like that and it's tough to try to, you know, explain to your mom or someone like that who's following you and, you know, doesn't really know what's up. It can, it can definitely be a little difficult.

[00:35:57] Rob Howe: It really can. And I think, you know, the main thing is that it's hard to get, it's hard to get upset with someone for over caring. You know, that's a, you know, you never would, it's, it's rare that that is even a thing. But, you know, just that understanding that not every day is the same. And, you know, there's just so many unforeseen like obstacles that you could potentially pop up and kind of have to be ready for them as a team. I want to shift gears a little bit if you're cool with that. So, yeah, I want to talk. So your background is in is in fashion design. So I want to talk a little bit because I have this and this is a hot take right now. So So, like, diabetes is not typically fashionable.

[00:36:41] Mary Lucas: Yes, that's true.

[00:36:43] Rob Howe: And they're, I think, beyond type 1, and I'm going to give you guys credit because I love the branding. I love the drop branding. And I love the t-shirts you guys do.

[00:36:52] Mary Lucas: Oh, thank you.

[00:36:53] Rob Howe: It's very minimalist and it's cool. But there's so many just terrible diabetes shirts out there. I'm calling you guys out, diabetes shirts.

[00:37:02] Mary Lucas: Oh, so true.

[00:37:04] Rob Howe: And like, you know, diabetes is sort of inherently gross. You know, there's like needles and blood. And I mean, we and we like lick our fingers after like six months instead of wiping them with alcohol swabs. You know, I'm calling you. I get it, guys. I'm one of us. I get it. Right. So talk about like what's what's the challenge there? What are we missing out on? Where's the opportunity for for diabetes to step it up in the style game?

[00:37:30] Mary Lucas: I know. Yeah. Yeah, it's funny that you mentioned that. I have seen a lot of not so great t-shirts and designs and things like that. I guess, you know, for me, I think that there's definitely a place for design or style in the diabetes industry. And maybe that's just because I'm someone who is very visual and creative that I can sort of I look at things and I'm like, well, of course, we should have nice diabetes cases. And of course, our meters should look good. And of course, our bracelets, our medical alert bracelets should be awesome, because that's a way that I sort of empower myself. I've even written a piece about this how I sort of consider myself a serial case changer because I changed my pump case I have a t:slim now I change my pump case pretty much every day to a different color to match my outfits or sort of what I'm feeling I have tons of different like grip grips and pump peel stickers and all that kind of stuff I have tons of medical alert bracelets and tons of like different diabetes cases. And don't get me wrong, I know that I'm really lucky to be able to have access to all of that and to, you know, to be able to have so many different great things. But it also, that's sort of what makes me feel great about my diabetes because I hate looking at it. It sounds so bad, but I'm a fan of good design. There's a lot of things that I see, whether that's products, diabetes products or cases or shorts or anything. There's a lot of things I look at and I'm like, God, I don't want to use that. That doesn't make me feel good and empowered about my diabetes. Who wants to use a gross little nylon case when you could have a fabulous case? And again, that probably doesn't sound so good now that I'm saying it out loud.

[00:39:44] Rob Howe: I want to focus on it too because I feel the same way and I think a lot of people do. I really do believe that because just any other high fashion wouldn't be in style if people didn't feel that way about other stuff. And I think the difference between, especially in chronic illness, the difference between diabetes, I think, is that we can live a almost completely normal life with all of our stuff every day. So to me, it makes total sense that you have different cases and you want different stickers and you want to match your, because that's just another thing you carry. You do the same for your phone. You do the same for, you know, for everyone with your car, your outfit, everybody's got their outfit of the day. Yeah, totally. Why wouldn't you want to feel that way about, you know, and feel empowered and feel safe and like able to bring those out because, you know, those, the medical companies, you know, they do a nice job of giving you stuff to carry around your, your meter in, but it's just a nylon bag meant for carrying. It's not designed for a

[00:40:48] Mary Lucas: diabetic to use. Yeah, exactly. I, you know, it's, it's funny. I even like my meters, I, my insurance made me switch to a different meter because they stopped covering one type of strips. And I like, I got the meter and I got the strips and I'm like, this is horrible. It's ugly. I don't like it. I don't want to use it. I don't want to look at it. It takes so much blood. And I just, I had such a like adverse reaction to even a blood sugar meter, which is also why I'm so excited that there are things like One Drop that's an amazing, like beautiful meter that it's just like, it looks so cool that it makes me want to test my blood sugar. And that's what I think that products can help you do is, you know, it can make you feel more inclined to do something. I know I'm way more inclined to go pull out my, you know, my testing meter and my strips from a bat from my, like my abetic case that looks good. Because I like looking at it, and I don't mind using it. Whereas if I had, you know, sort of something that I just wasn't very excited to even take out of my bag, I'd be like, Oh, I just, I don't need to test my blood sugar. It's it's okay. Right. So I don't know, just for me, it's a motivating factor and it's an empowering thing. And so, yeah, I like to see when people have different great products. Just because we have a disease, which I know some people don't like to say that, you know, I have a disease, but the reality is, you know, type 1 diabetes, it's a disease and we have a disease, but that doesn't mean that we need to, you know, use ugly things and, and, uh, wear ugly things. And we, we are in a sort of, it's with diabetes, you know, we do get some choice in some of the things that we use, which is really lucky and great. Um, and I think it is one of a great disease sort of where you can, or sorry, a great disease that, that didn't sound great, but,

[00:43:01] Rob Howe: But believe me, I say I'm like, yeah, all of the chronic illnesses that I could have, you know, I feel very fortunate.

[00:43:12] Mary Lucas: Yeah, yeah. And it's it's different, you know, than if you need to use a walker or you have a colostomy bag. You know, there's there's not a whole lot you can do to to in terms of the design for those. And that's sort of why I consider myself, I guess, lucky to at least have a disease where I can have a little bit of personal freedom, even if it is with the things that I need to keep me alive, if that makes sense.

[00:43:42] Rob Howe: Totally. You really nailed it. So, yeah, I think that's the, you know, all that to say, you know, we diabetes or diabetics are stylish people. I believe it. And and so, you know, we need more choices. totally as we sort of wrap up the interview I want to ask like two questions first what are you most looking forward to in the immediate sort of future you yourself just as a diabetic and and then number two what would you say like if you had one thing that you could say to someone who was recently diagnosed with type 1 what would you tell them

[00:44:25] Mary Lucas: so okay i'll start with sort of what i'm excited about um and i guess it's funny because i'm i'm both like professionally slash personally excited about a few things uh for example we're doing this bike ride across the united states bike beyond where we have a team of 22 type 1 riders biking across the united states and i'm really excited for that not only personally, but professionally, you know, professionally, because it's beyond type 1, and it's going to be an amazing thing for us and a great thing to raise awareness and to educate and do some advocacy work. But then also just personally, because I'm like, wow, seeing these athletes, seeing these people being able to ride 60 miles a day for 10 weeks and 4000 miles. It's I'm, I'm so inspired by seeing those people and just watching them in their training. So that is sort of one thing I'm, I am excited about. Um, I also, I am just started training for my first marathon. I'm hoping to run a marathon, uh, soon. So I'm, I'm excited about that a little nervous cause I've never run one before. And, uh, you know, running was never my sport. I was always in the water. Um, but I'm excited. I've, I've really been inspired, honestly, just by all of the type 1 athletes because I really, I, I have wanted to do something like a marathon or do a Tough Mudder or something like that. But I honestly was scared and thought that I really couldn't because I had type 1, but seeing all these athletes, especially recently, um, you know, we added this amazing woman, Robin Arzon to our council, who is like an ultra marathoner and a total badass. And I'm like, Oh, what? That's awesome. Like she can do marathons and she has type 1, I can do a marathon and I have type 1. So just being so inspired has been really exciting and sort of empowering for me, I guess. I also like on a diabetes front, I'm always excited for new technology to come out. I feel like we're in such an exciting age right now and pretty soon, you know, everyone's just getting like their AP systems and the different companies and there's, and you know newer improved cgms and all kind of stuff and i'm always just really excited and i know that 20s there's there hopefully is a lot of great stuff coming out in 2017 um that i'm excited about and so i don't know i guess i i always just am excited like for technology for the technology things um and i guess that's sort of probably both personally and professionally i guess but then okay so let's see um somewhat something that I would tell someone who was just diagnosed I would say that the most important thing I would tell someone is to know that you're not alone and you do not have to go through this fight alone um diabetes when you're first diagnosed can be really, really scary and really isolating. And I think just knowing that there are other people out there that have type 1 that have the same thing that deal with some of the same struggles can be empowering for people to know about and help people to, to sort of know that, okay, this isn't a death sentence, like my life is not over, I can still continue going. And, And, you know, in that same vein of telling people, you know, you're not alone, it's obviously telling people about social media and finding the communities online. And I also say, you know, even if you're someone that doesn't necessarily want to participate in Twitter chats or Facebook groups or any of that, you can join that stuff or just look around online and just see what people are saying. You know, you don't necessarily have to jump in all the way and start doing a whole bunch of stuff. You can just kind of see, you know, what people are doing and what's out there and maybe find some people who are doing something you like. And, yeah, so I just I think that really the most important thing to know is that you're not alone and that you can still thrive, thrive with type 1. And to always carry sugar on you, because the one time that you don't have emergency sugar is always the one time that you'll end up needing it. so that's my advice

[00:49:01] Rob Howe: that is so true yeah I think you really nailed it and I think thank you for sharing all that you shared with us today and just what an awesome awesome interview and so great to have gotten to know you and meet you and I'm really looking forward to doing more with Beyond Type 1 and I'm so glad you guys have been so open with me and with diabetics doing things and so supportive absolutely So in the same vein of connecting on social media, where can our listeners find you and Beyond Type 1?

[00:49:37] Mary Lucas: Ah, so you can find me on Instagram. It's, my Instagram name is Mary Alessandra with two A's in the end, which is a little bit hard to spell. But also if you just look up Beyond Type 1 and Beyond Type 1 daily on Instagram, those are our two channels and I often also post things that tag them and so you can usually see some of my stuff in the photos there and also just definitely everyone should follow the Beyond Type 1 Instagrams our one is for the Living Beyond campaign and then the Beyond Type 1 daily is just awesome sort of diabetes related things, whether that's quotes or articles or questions, all that kind of great stuff. People can find that online. And then obviously beyondtype1.org is our website. And we are on all social media platforms as well. Facebook, Twitter, Pinterest, YouTube. let's see did I miss it Snapchat Snapchat so we are we're all over the place and yeah if you just search beyond type 1 even on Google you should be able to find some of our social media and stuff like that and I'm definitely all over social media and all that stuff so pretty easy to find I would hope

[00:51:12] Rob Howe: well thank you so much again Mary I really appreciate the time and this was so much fun and so rewarding and I look forward to future conversations

[00:51:20] Mary Lucas: yeah thank you so much Rob it was an honor to be on your show thank you for having me

[00:51:27] Rob Howe: 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 diabeticsdoingthings.com