Diabetics Doing Adventures and Beyond with Dana Howe

[00:00:00] Rob Howe: Whoa! New intro, who dis? 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're telling the amazing stories of type 1 diabetics all over the world. I'm very, very, very excited to introduce my special guest today, Dana Howe, calling from the Bay Area. Yes, hello. Thanks for having me, Rob. Extremely happy to have you. For those of you who don't know, Dana is the social media manager at Beyond Type 1. Some of you guys, I'm sure, have interacted with her in some way.

[00:01:49] Dana Howe: that's probably true. I am often the voice behind the beyond type 1 handle on, um, Instagram, Facebook, Twitter. So at some point we may have exchanged messages without you even knowing.

[00:02:02] Rob Howe: Look at that. Just, we're just connecting everybody now. Um, it was kind of interesting how you and I got connected as well, uh, through one of my other podcast guests, uh, Sid Sharma, um, who's going to be biking beyond across the U S this summer. Um, was nice enough to just connect us after our conversation and just kind of get this ball rolling.

[00:02:25] Dana Howe: Yeah. No, that's been awesome. Sid is one of our team leaders on Bike Beyond. One of the other hats I wear, aside from social media at Beyond Type 1, is I'm also our lead for the Bike Beyond team for the ride this summer. So I've been super busy, and that group is just so amazing, and we can't wait to kick that off.

[00:02:46] Rob Howe: And what's that like? I mean, just talking to those people from all over the world. And I've seen like the Instagram stories where everybody's on Skype, all together talking, just kind of being someone who, because you're not riding the race, are you?

[00:03:02] Dana Howe: No, I'm not. I will be with the team for portions of it, but I will, you know, most of the time be working in the office still in San Francisco, meeting them at several points along the way for celebrations and check-in points.

[00:03:15] Rob Howe: So what's it been like just sort of seeing that come from like a concept to selecting the team and now seeing their training and planning these events? Obviously, like a daunting task, but just something that, you know, it's got to be inspiring just to see the whole thing sort of transpire.

[00:03:33] Dana Howe: Oh, for sure. It's been absolutely amazing. I am blown away every day by our team. we I mean it really speaks to the beyond type 1 community on social media I think because we had this idea come to us from one of our global ambassador ambassador council members Walt Drennan who had ridden across the country before with other groups but he was the only type 1 on the ride so he brought us the idea and then said can we do this I want to make this happen with a team of type 1 riders and we said okay let's do it we threw the idea out to our social media networks looking for applicants, looking for team members. And just from doing that, we have managed to pull together this amazing team. We have riders from five countries and 14 states in the U.S. And just working with them, even remotely, I feel like I know them really well. And I cannot wait for them to come together in person because I think it's going to be really, really powerful.

[00:04:30] Rob Howe: And that's happening relatively soon, right? For our listeners who don't have the exact date on hand, when does Bike Beyond kick off?

[00:04:38] Dana Howe: Yeah, we are going to be in New York City in a month. Our kickoff party is June 3rd in New York. Our ride launch is Sunday, June 4th morning. So stay tuned for more details on that. Or if you're interested in our cocktail party, fancy kickoff on the night of the 3rd, check out the website. Can I plug it? It's beyondtype1.org slash bikebeyond.

[00:05:00] Rob Howe: Oh, please plug it. Please plug all of that.

[00:05:04] Dana Howe: Totally. I hope people will go check it out. We're super, super excited. And we're going through tons of places, not just big cities, obviously. It's 70 days. So go check out the list on that website and see if your hometown's there because we might be riding through.

[00:05:19] Rob Howe: Yeah, I saw Denver as one of the cities, Cleveland, I think. It's an awesome, awesome thing. And I think getting a lot of people who have been following the Bike Beyond story and have been following beyond type 1, but either aren't in, uh, in New York city or, or the Bay area or Los Angeles where you guys do a lot of events, um, and are like, are very excited to get involved. So I know a lot, I've talked to a lot of people who are either like driving or being like a host family. Um, and it's just, just really exciting kind of seeing the whole community come together.

[00:05:54] Dana Howe: Yeah. We're so excited.

[00:05:57] Rob Howe: Great. So let's, uh, let's get back to you. Cause this is, uh, this is your interview. This isn't like beyond interviews. So Dana, walk us through your diagnosis. How did you come to join our T1B family?

[00:06:11] Dana Howe: Yeah, absolutely. So I was diagnosed when I was eight years old. That was in 2002. So it's been 15 years. I come from a family of people with type 1. My dad is type 1 and my mom's dad is also type 1. So there's no one in my immediate family who has ever really known a life without being connected to someone with type 1 diabetes, which is really cool for a lot of reasons. Um, it meant that I was diagnosed really early, which, you know, now that I've joined the type 1 community, I understand how valuable and important that is for obviously your health and safety. But I think also just the trauma that can be associated with diagnoses when people don't know what to look for and it ends up being like DKA and all those scary things. So So I actually, my blood sugar was only like 270 when I was diagnosed. And looking back on that now, I'm like blown away at my parents' ability. But, you know, little did I know my whole childhood up to that point, they were like waiting to see or like always paying attention to how often I was peeing. You know, I didn't know they were doing that, but they were. So they were able to catch it really early. And in terms of, you know, actual diagnosis, I was admitted to Yale New Haven Hospital in Connecticut for one night to do training and stabilize me and start me on insulin. But I really felt, well, I think eight is an interesting age. I was like old enough to sort of understand, but I was definitely like a kid, a little headstrong, like, yeah, this is no big deal. I got this. And so kind of just jumped right on board. And then I've had ups and downs since then, of course. But for me, diagnosis kind of felt like joining a club. It wasn't it was something everyone was already familiar with. So now I was just doing what my dad did and needed to take a

[00:08:16] Rob Howe: shot before I ate kind of thing. Well, and I think that's first of all, that perspective is so unique to me because I think you're the only guest who has one, let alone more than one family member with type 1. So like joining a club, obviously, and like your parents, like having that heightened sense of awareness. Yeah. A, like it's a huge advantage for your, you know, your diagnosis and post-diagnosis health and kind of the adjustment and the education because there's really like almost no need for it. They're right there. And like you said, the routine is there. they already do it. So what was that? What was that like for you? And like, did you and having somebody else who's not your doctor, and I guess having your parents as your advocates really understanding what you go through? Because I think kids and teens a lot of times feel alienated because their parents don't know what they're going through.

[00:09:10] Dana Howe: Yeah, I think that was a huge asset to me. Like you said, I mean, up through when I went away to college. So, you know, through my teen years, through when I was 18, I would drag my dad to all my endocrinology appointments because I felt like he, you know, as a fellow type 1 and as my dad was such a strong advocate for me. And I haven't always had the best relationships with endocrinologists. I have often felt like they don't understand me and what I do day to day, as well as I do or my family does.

[00:09:45] Rob Howe: Well, and I want to stop you there because I think this is an important thing. And I hate to cut you off, but this is, I think, I don't want to gloss over this because this is, I think, a really big issue for a lot of type 1s. So having your dad there as a type 1 and your father, so like a double advocate, what types of issues were you not seeing eye to eye with your endo on and their sort of inability to understand who you were and what you wanted to do?

[00:10:15] Dana Howe: Yeah, I think that's a really good question. I think a lot of it, A, is emotional support of feeling this disconnect between the many ways that type 1 impacted my life and the doctor wanting to talk about it in terms of data and statistics and numbers and make small tweaks that felt disconnected from how I experienced it in my day-to-day life. And it wasn't necessarily that I ever straight up disagreed with what the endo was saying. I just felt like they didn't see it as like a whole person who does this all the time, but more as like a, what can we do with these numbers to make them better? Like, I don't know if you've ever felt this way, but I've had experiences where, and my attitude has changed over time, but especially as a teenager where I would go and they would say something like, maybe you should tweak your carb ratio or play with your overnight Levemir. And I would be like, I'm always doing that. And having them say like, you should maybe take one more unit of insulin overnight. I would just almost feel kind of like this is such a like, yeah, that's advice. That's helpful. But it's kind of so removed from what I'm doing already every day. As I'm I am a person who like feels pretty comfortable making decisions about my medication, especially like my insulin dosage. based on my experience rather than on a medical professional. And I wouldn't necessarily tell anyone else to do that. But I'm like someone who is willing to just try changing my dose, you know, early or early.

[00:12:03] Rob Howe: Of course. Of course. And I think, you know, obviously we want to caveat this with like we're not doctors or making medical, giving medical advice of any kind. But I'm the same way. Like I don't need to go see someone every six months for them to tell me to change my carb ratio from 15 to 12. Exactly. I'm doing that already. Or if I feel bad, I'm going to give myself the amount of insulin I think I need to feel good. Right. Or, you know, or treat with a different low blood sugar treatment. You know, it's such a difficult thing because you have to look at everything with a soft lens, like a soft focus. and I've been really dealing with this a lot in the last few years is like to refine those edges a little bit and just understand that like every day is so different every situation you know I got I talked to somebody else about this but I got wrecked by a chicken sandwich like two months ago that like I had no explanation for yeah it just seemed like maybe they just pumped a bunch of sugar syrup in the ketchup or something I don't know like it was like one of the worst afternoons I'd had from a high blood sugar in years. And on paper, I did everything right. And so it would be easy to get mad. It would be easy to get upset. And maybe if I had told a doctor about that, they would have been like, well, just never eat a chicken sandwich again. And so it's just like, yeah, but maybe one day I will go get another chicken sandwich. Right. And probably give a similar amount of insulin. But obviously, like be wary. I don't know. It's just one of those things where it's almost the imperfect science. Well, I've had

[00:13:40] Dana Howe: people I remember really early on, we didn't do a lot of going to support groups because, you know, as I said, my family kind of was our own support group in a lot of ways. But right after I was diagnosed, I remember my parents taking me to a support group for kids with type 1 and their parents locally. And one thing that totally stuck with me was another parent saying, look, it's an art, not a science, and you have to treat it as such. And I know some people will disagree with that perspective. Because, you know, now in my work with Beyond type 1, I see people from across the board and how their management styles work. There are people who love data, who are really digging into their data and feel that they that that gives them the power to really refine and use those sort of like you said sharp edges and I'm I'm a little like that but I'm definitely more of a it's an art not a science person because I personally just feel like there are so many variables at play that I'm never going to be able to control them all so I've got a role

[00:14:43] Rob Howe: with it right and I think we're all different right we and and every day is different and I agree it is more art than science that's more my approach as well that being said like I I know what I do that works and I and I have like this criteria of like okay this is this is stuff that makes me feel good especially in terms of food food that makes me feel good food that makes me not feel good or bad just like average and then food that makes me feel bad whether that's being tired or you know just giving me a headache or a stomach ache or whatever it is and some of it's related to diabetes and some of it's not, but just knowing like, this is me, it probably doesn't work for everyone, but you know, this is what I'm going to do. And I remember talking to doctors specifically because there's a lot of preventative medication you can take orally for, you know, to minimize damage to your organs long-term and things like that. And I remember them having like these side effects, like depression and like neat, like one in particular had like joint pain. And I I was an athlete. So I was like, well, I want to minimize as much joint pain as possible. I have enough of it. And I remember having those conversations with my doctor and them just being like, well, we don't understand. And it's like, well, right. So I don't know. I think it's so interesting to see how everyone's treatment is so different. Right. And I think what's really cool

[00:16:05] Dana Howe: is that you get to become an expert at your own body in a way that a lot of people don't. I hear it in you talking about yourself and your choices. And like, I really think that a lot of us know more about what works for us and what doesn't than our doctors do. That doesn't mean they're not a great resource and a really important tool and person to have in your life to lend their perspective. But something cool about type 1, and especially I feel this way about my Dexcom and CGM is that I have this like, really interesting picture into exactly how what I eat and how I exercise and every other thing I do impacts my health. And I feel a lot more tuned into that

[00:16:47] Rob Howe: than many other people. And I think that kind of goes back to your point about data. You know, I think it's amazing how type ones are data scientists, you know, we take real data and we turn it into action without having to sit there and think about it all day. It's like, oh, well, I'm a little bit high. I'm going to correct with this because I know it's my ratio and this is what I've done today. And luckily for us, we have a lot of technology today compared to, you know, when we were diagnosed 12, 15 years ago where, you know, we had to guess on some of those things or they were a little bit more pain, you know, you had to prick your finger more often or whatever the case is, but we're all doing the same things. We're thinking the same way. Like, how do I get my blood sugar in the range where I feel good? Yeah. So yeah, I think it's really cool that we have like all that data and as long as we use it for good and like keep that soft focus and say like it's not all about the number um and you're gonna have your days where a chicken sandwich just knocks you flat on your feet off your feet like um right and you're gonna have days where you know you feel like you're honeymooning again and you're you just you can do whatever you want so yeah it's very interesting um yeah i want to ask you you mentioned something earlier about um because you had your parents involved and in your type 1 and their type 1 as well, that you guys didn't get super involved in like the community and like support groups. Why do you think that was?

[00:18:14] Dana Howe: I think that we felt very like we had things under control. And I think we did. I mean, in a lot of ways, having and I think it also goes back to like, this is before the Internet was really connecting people. Um, local support groups were available and, you know, it was great that my parents encouraged me to go check it out near when I was diagnosed, but having a really understanding family that I was spending a lot of time with did meet that need for me. I also think that there were a lot of problems that, and I don't want this to come off the wrong way, but if I'm being honest, there were a lot of problems that people who are new to type 1 experience that we weren't experiencing because it was, there wasn't a lot of that sort of like shock and adjustment period. So I think we were sort of like, we got this. Does that make sense?

[00:19:11] Rob Howe: A hundred percent. And I think I want to, I want to talk about that a little bit as well, because I'll use an example from my, from my personal life. So, uh, I'm in, I teach improv of comedy and perform at Dallas Comedy House. It's super fun. Early on when I was trying to take workshops after I'd finished classes, I went to a couple of workshops that were like tune-ups or like fix-ups. I was like, hey, come in here if you want to get back on track or whatever the case may be. I was like, I want to take as many workshops as possible. I was super into it. About the second workshop, I was like, hey, I don't need to fix anything. I'm not in my head the way these people are. And I think that was many of the workshops were like, get out of your own head. And I was like, oh, like, I don't need this. Like, this is not for me. And I think sometimes I think we have to be careful. And like you said, I don't want to come off the wrong way, but there are a lot of communities and a lot of type ones who are struggling with things that are unique to their own journey and can dominate that conversation. And honestly, I will say, I'm just going to say it out loud. Like there's a lot of them that are just the worst. Like they're the worst community like it's just very i i don't know it's very me me me and it doesn't it doesn't really they're not very modern i feel like in the approach and i just i don't know for to me as somebody who is a like millennial techie person yeah they didn't they didn't really appeal to me i felt like they didn't know what i was going through and i felt uh and especially early on because i was a teenager and i knew everything um of course yeah you know i i felt alienated by that Now, I think, especially with Beyond Type 1, who I think is the prime example of that, I'm not just blowing smoke because you work for Beyond Type 1, I really believe this, like, they understand what it's like not only to be diagnosed with Type 1 at a young age, but also living with it as an adult, which I think that most of the other Type 1 organizations leave completely, like, just unaddressed. Because, like, we're fine now, we don't need them anymore, I think their original approach. but there's all these amazing people out there who are who just needed a place to connect

[00:21:18] Dana Howe: right well I can say I have a really interesting perspective now as someone who's the social media manager and sort of moderator of a community and a type 1 and I actually really almost think about those things separately like my experience with type 1 personally definitely makes me good at my job because I understand what where people are coming from but I've just had to take a step back and understand that like, while we have a lot in common as a, you know, people who are impacted by type 1 diabetes, there are so many different experiences under that umbrella. And just being understanding of that and being open minded about it and helping people find and encouraging people to find the community that's right for them and the space that's right for them is, is part of, like what I really like about my job. And also, I think part of why the internet has been so awesome. So I have found that since you know, I started kind of looking for community when I was in college and after college, because I was no longer living with my family. I am now a young adult with type 1 diabetes. And I'm looking to connect with people like me, because I've always had a sense of type 1 community in my life. And now I'm living on my own. And I want that again. And I think that social media and the internet, like no matter who you are, there's some group or people out there who want you to be part of their team. And I think that's super cool.

[00:22:49] Rob Howe: And I think the more people I talk to, and I've been trying to say this as much as I can when I meet with people in person, is they say, I felt so alone. Um, like, I felt like I was the only person with type 1 because they, you know, didn't have any friends with it. There was no one at their school or no one in their, you know, community that understood what they were going through. And so they're turning to the internet. And a lot of times, like, you search hashtag diabetes, like you're going to pop up beyond type 1 is probably going to be first. JDRF does a nice job. ADA is, is okay, I think. But, and there, there are obviously like some other communities and a lot of really great, like individual people who have their own platforms that are sharing that journey. And I think that like humanizes it. And you're like, all of a sudden you're not alone. And somebody who can, we're all on our phones all day anyway, might as well, you know, add a little enrichment to your life. And I think that's what's rare about the T1D community is it's, there's so much negative, I'll say negative vibes out there on social media. There's so much curated lifestyle. and I'm guilty of looking at that myself and seeing like well why isn't my life this way but the type 1 community is very open honest and you know even if and like also gross because we're just like needles and and blood sticks so it's like it's very it's very real right yeah I love

[00:24:07] Dana Howe: that about it for sure and I think I get a lot of flack and I don't know about you but as someone who's sort of in like the social media and marketing world I get a lot of flack from my friends who aren't of being like, Oh, you're a social media manager. Like, that's such a sort of millennial BS job. But they don't understand the like, type 1 diabetes, chronic illness space, like this is so much more than that. And it's so much more than like writing tweets. It's about connecting people who are feeling alone and dealing with a chronic illness in a way that has never been possible before. And it's hard to explain to people who aren't part of it. But it's

[00:24:44] Rob Howe: super awesome and powerful. So, and you know, I have to agree like a thousand percent, like, I don't know. And I think a few years ago when I was getting started in my career as well, because you're a little bit younger than I am, but was getting into the social media manager space. My first job was like a marketing manager. And that was still the narrative, right? Oh, you work in social media because you tweet all the time and you love Facebook and are you just on Facebook all day and blah, blah, blah. And so now I think it's evolved so much more than that, where, you know, almost all of consumers time are being spent on social. And that's still a huge part of my job. And, and now like these communities have popped up where people are actually like impacted by this stuff. And when I started the podcast, I had the goals, like, you know what, if one person has a positive reaction or is influenced somehow by this, then it's successful. and the other day I did an interview with a guy from Australia who listened to the podcast on his drive back from his like relatives or in-laws house like a grown man he was like you know what I was having a terrible day with type 1 I had all this food he's like I listened to the podcast and the guest on it was telling me something that I felt like I was going through and it helped me so much and you know what like that moment right there I was like wow this all this social media you know stuff that people will complain about or um or put down or say is bad like look at all the good that it can do and it's so simple for somebody can to connect to and that right and I was like wow I I have to keep doing this this is yeah you know any any time where I'm up late at night like editing or doing social graphics or whatever which is like totally not my strong suit um I just think of those moments and I'm like and I'm sure for you at beyond type 1 and and everyone there those peak moments where you get to have an interaction with somebody and they just say thank you. They're just grateful and they tell you their story. I can't put a price on that.

[00:26:41] Dana Howe: Yeah, it's awesome. And I am super lucky to get to experience a lot of that in my job.

[00:26:48] Rob Howe: So I talked to you a little bit earlier because I'm going to try to ask some deeper questions, I guess, because I'm pushing myself. I'm trying to get better at this. Yeah. I think I may know the answer to this already, but when you think of someone that you look up to as a type 1, somebody that gives you kind of hope and keeps you going, who do you think of?

[00:27:09] Dana Howe: Well, I think the obvious answer is my dad. The other answer is my mom's dad, who's my grandpa. He is in his mid 80s. He's been type 1 for over 50 years. He's doing great. And I love having him as a role model in my life. When I see him, we talk about how things are going and what's new with diabetes and without, but he's amazing. And I think, honestly, I cannot overstate the power of having someone like that in my life. Because when your immediate examples of people with type 1 are people, my dad is in his 60s, and my grandpa's in his 80s, are people who are healthy, without complications, have lived with type 1 for over 50 years. I just never stopped to think about being afraid of the long term implications of it. Like, in my life, in general, that has not really been a part of my type 1 experience. Whether or not that's based in fact, or based in anecdotal evidence from my immediate family, I'm not really concerned about. Because I think that being able to live relatively without that fear has been a huge asset to me.

[00:28:24] Rob Howe: I mean, I've that right there, you said it. I mean, that puts down every stereotype, you get to live that reality. How, how awesome is that? Like, um, I was listening to another podcast and a guest got asked a question, like, you know, what you, what would you tell your 20 year old self? And he's like, call your mom, call your dad, like call your family. And, you know, what a benefit to be able to not only connect on a family level, but also on that, Hey, you know what? 60 years from now, like you could still be, you could still be doing this, like picture yourself in my shoes in 60 years. And that gives you hope, right? That's all that negativity that could be out there where it's like, oh, we don't know what's going to happen with somebody living with insulin treatment in 60 years. And it's like, well, I do. I have at least

[00:29:07] Dana Howe: an idea. Yeah, I have an example, right? I have a person who is in my life who I can point to. And again, I just, I don't really know if it matters on an emotional level, what the statistics are when you have those things in your life.

[00:29:24] Rob Howe: No, it really doesn't. It's like you get to, you can say like, I personally believe like, it's again like going back to the doctor like it it's not as much about the data as it's like hey i know this is possible yeah and i think being you know being around that can have such a huge impact and you don't even maybe don't even realize it at first and now um you mentioned this earlier uh you're from the east coast you moved out to the bay area you live uh you know you're separated now from your family life what's that uh what's that been like obviously like it's there's a void there I'm sure. But as you're looking to connect more and you have the opportunity to in your work life, obviously, but what have been the struggles for you now that you don't have that

[00:30:09] Dana Howe: proximity? Yeah, it's interesting. Well, as it relates to type 1, my type 1 community has exploded since I've moved to the Bay Area, obviously. Like, on one hand, my family is further away. But I do get to talk to them and see them pretty regularly. Like it's, it's tough, but I think not any more difficult than it is for any person who's in their 20s who decides they want to make a change and move to a new city and try it out. And I'm so grateful that I have this opportunity to do that because it's an important step for me in my life. But from a type 1 perspective, I think it's been a cool growth thing. Because I've gone from having a really small like nuclear type 1 community and family to having this massive community of people with type 1 through my work with beyond type 1, but also have become a coach with riding on insulin. Are you familiar with them? They're amazing. Ski and snowboard camps for kids with type 1. I've coached with them for the first year this year, volunteered with them in the past. But there are a group of like 20 elite coaches who are all people who are really into skiing and snowboarding and have type 1 and they've become some of my close friends this year. So on one hand, further away from familial support, but like so surrounded by type 1 support. And I'm just like so excited by how many friends I have now that I didn't have before where people I can like, text or call or meet up with when I'm having a bad day with diabetes.

[00:31:49] Rob Howe: It's pretty incredible. I, in some ways, feel very similar, I'm sure on the smaller scale, just because it's a smaller percentage of my life, I think. But yeah, you know, I started on Instagram. And so I have my Instagram account where I interact with diabetics all the time. But now it's like starting to extend over to like Facebook. So I connect with not only, you know, my Instagram account, which is basically a brand account at this point, but it's like, uh, now I really know some people and it's like, Whoa, this is cool. Like I get to connect with people who I actually kind of feel like I'm connected to, like, like really connected to, like I actually know them. It's awesome. And what does that mean for you? Like, uh, just to, I mean, I guess really start your career with something that's so close and so tangible for you as you know that and that you get to get this extra I mean added value I really can't imagine it's it's probably similar to somebody who is addicted to sports getting to work for like Nike or Adidas right you get to be there on the front lines and connect with those people yeah I I mean

[00:32:55] Dana Howe: I think it's really amazing and it's really powerful and I try to imagine myself working in social media or in marketing or in communications for a cause that I care about but one that's not like a personal thing. And it's hard to imagine for me at this point. And because it's so like deeply part of my day every day, and it really keeps me like energized to be doing the work that I'm doing. That said, it's not without challenges, because I think that like self care and space become really important. It's been a pretty steep learning curve for me for like, how I think about myself and my type 1 versus reading about type 1, many hours of the day from many different perspectives. I've had to sort of figure out how to compartmentalize that and not let, you know, everything I read, also have this whole thought process about how does this reflect on me and my management and my life and my background. But rather kind of take a step back or have some perspective about this as like a big picture community, many different perspectives, and then myself almost like fitting in somewhere. But I need to figure out how to separate work and like my personal health and it's it's happening it's but it's not without a challenge like I think anybody if you are type 1 working in type 1 if you are a you know lgbtq person who's working in activism in that space like if you you get what I'm saying it's like yeah it's challenging and something that I had a, you know, at first was hard. I think that I've gotten to a pretty good place, but it's something I continue to work on and do little things throughout my day where I just need to like take a step back, not think about work for a little bit because some days it's the end of the day and I'm like, wow, I have been thinking about type 1 diabetes for hours and now I have to go deal with mine and that's tough.

[00:35:13] Rob Howe: Right, so almost like a burnout. And I mean, I think it's work-life balance, but it's also work-life, diabetes-life balance.

[00:35:22] Dana Howe: Exactly. Diabetes-work balance. It's like for families tied up in work-life balance. And so I think that I have to be very careful to make sure that I'm being mindful of myself and my needs in that space.

[00:35:37] Rob Howe: And I think that's something that maybe the other side of the diabetes community online, And there's so much content. There's so much great stuff happening. But for a type 1, especially someone recently diagnosed or a type 1's parent who is just looking for information and can sometimes, you know, the Internet is an amazing resource and is literally my probably my favorite resource, I guess. My favorite is I say natural resource, but it's like, you know, it's something that, you know, without I, my life would be dramatically different. And it can be a trap, though. You can fall into a, you know, a wormhole and you get dug down into something and you're like, oh, my gosh, this is very overwhelming. what would you say to somebody who either was recently diagnosed or has a child who's recently diagnosed and feels overwhelmed by the amount of content the amount of advice the amount of

[00:36:34] Dana Howe: options that they have online yeah I think that's a really good question I'm not sure I have a quick answer to it I often think about and I think about this from type 1 perspective and just personhood perspective about the age that I am where in my childhood and young adolescence, that wasn't so much a problem. And I was able to like figure out what worked for me before the internet exploded in a million directions. Um, like I think about how I feel like it was a really good thing that Instagram and Snapchat didn't exist or weren't popular when I was in high school because that would have been really hard for my mental health and social well-being. And I think it's kind of the same thing. Now we have a lot of hard questions to ask ourselves because the internet is both amazing and terrible. That said, what would I tell someone who's newly diagnosed? I would A, say beyond type 1 is the best and we have a first 30 days section that makes it pretty easy. But B, I would say, just make sure you're taking time offline for yourself and figuring out what works for you. I mean, I would say that to anyone in any circumstance, even as a person who's a huge fan and user of the internet and technology in general. I'm also a big advocate of like, some some dead time, totally unplugged. What do you do for your dead time?

[00:38:07] Rob Howe: What do you do when you're like, I need to get some space? I know you mentioned that you're, you know, riding for type 1 instructor. So is he, are you, do you hit the slopes? Do you hit

[00:38:16] Dana Howe: the mountain? What do you do? Yeah, no, that's a big one for me. Skiing has always been a really big part of my life. I grew up skiing in new England. I was on my college ski racing team and now like try to ski most weekends in the winter. Um, it's been an amazing season in California. So plug for that. It was a great welcome to the state. Um, but just generally for me and, you know, not for everybody, but outdoor activities for me, where I'm sort of forced, like, there's no use for being connected. And there may not even be an internet connection on my phone or elsewhere is like just such a good time to like, be in the moment, be with friends, be outdoors. So skiing, camping, hiking, recently have gotten kind of into cycling. And that's been fun for the Bike Beyond team as well. But yeah, those sort of physical outdoor activities that are just like, Like you use a completely different part of your brain and I really like that.

[00:39:14] Rob Howe: Yeah. And I mean, it's, it's so important. And especially for somebody I think who works in social media marketing or internet marketing or just spends a lot of time online anyway, looking at a screen, like I mentioned improv earlier, like that's, it's one of my favorite things because for three hours a week, I have to teach a class and I can't look at my phone. I can't. And I need that. It's just that that extra space is so important and kind of setting that intention to be disconnected.

[00:39:44] Dana Howe: Yeah. Sometimes I realize that even if I go away for a whole weekend, like travel for a weekend and go, I went bike camping the other weekend. It was super awesome. We biked to a campground, you know, 30 miles each day. And on one hand, I was like intimidated, right? Because I was like, I'm going to be so exhausted when I get back on Sunday night. And then I'm going to have to go wake up early and start work immediately. There's going to be so much work that piled up. But I often find that when I take the time to do those things, even if they're physically exhausting, I am so much more mentally and emotionally energized when I do go back to my work that it's beyond worth it. Like, it's so much better.

[00:40:28] Rob Howe: and kind of in that same spirit like when you when you go and you're going to start your day and you know right now you said you're in a really busy season um there's a lot of really exciting things happening on your career front what do you say to yourself what intention do you set for your day like um and and how does that align with your type 1 yeah that's a super

[00:40:51] Dana Howe: interesting question. I'm a total morning person, first of all. So full disclosure, not everyone will think that this sounds fun, but I get most of my work for the day in terms of just like checking things off my to do list that are hard items done between like 6am and 830 in the morning. I am definitely my most clear headed and most productive. And so for me, it feels really good to just wake up and dig right in to work. And then after I have checked a few things off, I can take a step back and be like, I feel great. Like I feel like I got some stuff done and now I can eat some breakfast, think about how the rest of this day is going to go and sort of do all of those other things. And it really frees up my time during the day for whatever pops up and to be available. Because, you know, at Beyond Type 1 and in my work with both Bike Beyond and social media, it's really, really good for me to be able to be flexible and sort of agile with what I'm working on in the moment. So that's sort of my solution for how I've structured my day. I also find that from a really nitty gritty Type 1 perspective, my blood sugar is pretty dialed in right when I wake up. and I just am like clear-headed, haven't eaten anything, have a cup of coffee and my blood sugars are usually pretty stable and then I mess with it after like two hours of doing work.

[00:42:24] Rob Howe: It's funny like you mentioned like all these great things that make you successful in your regular career also carry over to type 1. I'm not a morning person but by nature, I even when I was a little kid before even type 1, I just love to sleep like it's like it's a it's a it's a vacation for me. But this year I've really tried. I think I've known for years like the most successful people wake up early in the morning. The people who are happiest with their work life balance wake up early in the morning when nobody else is up and no one's bothering them and they can take time to do exactly what they want to do. And so this year I've been very fortunate that one of my friends has wakes up with me Monday, Wednesday, Friday, and we go work out at like five in the morning. So at 6 a.m. I'm not only awake, but I'm like I've already done my workout for the day. So I'm like really awake. Yeah. And so even from then on, like by the time I go into like my office, even if I want to go in early, I've got enough time to do whatever I want. and I would encourage like yeah we're here we go like you know giving like life advice at this point but like I can't stress how important that is uh and to start you know Drake would say like I start my day slow uh silk pajamas when I wake though uh so like that that to me like it's it is important to start your day slow because I used to wake up with like just the amount of time I needed to shower, get ready, eat breakfast, run out the door. And I used to have kind of a crazy commute. And I, and that would, on some days, like I wouldn't look at my reservoir and my pump and I would be, I would hit like a low reservoir, uh, notification, like right at the beginning of the day. And I'm like, what, I'm not even ready for today. Like I, you know, I'm, and now I got to figure out a way to get home halfway through the day. And it's just, it's, I think it's so much more productive and helpful and you can balance yourself out if you give yourself a chance to.

[00:44:24] Dana Howe: And a morning is a great way to do that. Yeah, it can be a challenge, but.

[00:44:29] Rob Howe: I guess basically what I'm saying is you morning people, you stubborn morning people converted me.

[00:44:33] Dana Howe: I know, but I'm no fun after 9 p.m., which is tough being 23.

[00:44:38] Rob Howe: Gosh, I totally agree. And even now, I wish I could tell you it's going to get easier, but I heard this amazing quote. I was in this improv workshop with Mike Birbiglia. I love him. First of all, he's amazing. And even like the 15 minutes that he spent with us after the workshop just doing a Q&A was just so insightful. And, you know, he jokes about how nobody, like most people don't know who he is. And they're like, oh, it's like, oh, you're so niche. And I hadn't really honestly had no idea how much I was going to like him. but um in the workshop um it wasn't mike that said this but it was the the teacher his name is gavin and he was like give yourself permission to be boring and see how what that changes in your life and i was like holy crap like this guy just is like and this was even in like performing he was saying this but like what a what a note for for like life like you know what as long as you're being purposeful and doing what you want like be as boring as you want to be i love that

[00:45:42] Dana Howe: that's so good it's awesome it is and i mean you know as long as you're able to free yourself up

[00:45:50] Rob Howe: and be purposeful with like oh i can do anything i want here in the morning and then you know what if it's 9 p.m and i need to go to bed like oh well nothing yeah mom always said nothing good

[00:46:02] Dana Howe: happens after midnight so right well i honestly think that's kind of an important note for people with type 1 who are like, you know, burning the candle at both ends, because like, sometimes it's hard to admit and for me as well, that having type 1 and dealing with it all the time is taking up energy from your day. And you want to like, it's hard for me. Sometimes when I have friends who are just put powering through working long hours, drinking at night, going out, all kinds of social stuff and all kinds of work volunteer otherwise i there's a pressure to keep up and i think that for people who are dealing with something like type 1 it's like very important to just remind yourself that like it's okay to be boring because you have this thing that you're doing and it takes

[00:46:56] Rob Howe: a ton of energy and you need to take care of that 100 yeah okay so um you have been awesome about responding to like the tougher questions that I know I prefaced our conversation with, like, I'm trying to get better at asking these. Um, what are you most looking forward to as a type 1? And I know you have a lot of extra insight because you're involved with beyond type 1 and get to see a lot of things, but, um, you know, as somebody who has seen their whole family, immediate family, like be, um, affected by type 1, what are you hopeful for?

[00:47:33] Dana Howe: um great question I think that I am a person who is not holding out a lot of hope for a cure for type 1 diabetes in my lifetime personally I'm exceptionally excited about the prospect of it for the world and I'm incredibly hopeful that it does indeed eventually happen but on a personal level. It's not something that I spend time thinking about or like ever really picture being a part of my life. I think about the fact that I will have type 1 for the duration of my lifespan and I'm okay with that. So that said, one thing in the immediate future I'm excited about, I'm currently jumping through all kinds of hoops to try to get a pump. I'm not on an insulin pump. fun fact I had I'm on multiple daily injections on pens I had a pump for a year when I was in high school didn't really do anything for me had a couple malfunctions um dropped it went back to what I was doing but I think part of my work with beyond type 1 and having lots of people with type 1 in my life I've had enough positive examples of people who love their pumps that I have now given into peer pressure and I'm open to trying it again. So hopefully in my pretty immediate future that will iron itself out and I will be trying an insulin pump. So that's cool and exciting. But, and I will say I'm getting on board at a time because I think that the closed loop systems are coming. They obviously, there are some that are on the market, but I think there will be more and they will be better. And that's something that I'm excited about and want to be involved with. I'm kind of a late adapter of technology. There's, you know, all different kinds of people and their takes on when their right time for them is to get into the diabetes tech. I love my Dexcom, but I love it because it adds value without adding risk. And I'm I'm relatively set in my ways and kind of a late to the technology table person. So I'm kind of sitting back here and waiting for the rest of you to try things and then tell me what's actually worth it.

[00:49:55] Rob Howe: I love that approach. I have an older insulin pump and I don't have a CGM at this moment. I tried to have one a few years ago and it just wasn't suitable for my active lifestyle. But like, I think it's great. I love that there's technology out there that people are trying and are having great success with. But I'm also a proponent of if it ain't broke, don't fix it. So, you know, I'm sure as you are, I'm very happy with my A1C right now. I'm happy with my balance that I have. I do want to find ACGM that works for me here as soon as I get some of this. My startup insurance issues kind of worked out. But again, like you said, I'm a big advocate for making sure whatever works for you works. And I think it's important to know yourself as well. Well, obviously know yourself, but knowing how risk averse you are and what you're looking for in a diabetes technology or a treatment method. And I also echo, you know, again, you and I are very similar in I think a lot of our outlook. Like I'm not, I'm not really hoping for a cure every day. I think it's something that I obviously wish would happen. Nothing would make me happier than being a former diabetic and a type 1 diabetic and having, having a bunch of friends who were former diabetic, type 1 diabetics. But again, I think it's like, it's not something that my life hinges on. I am able to live and treat my type 1 very comfortably. And I think when I meet people, especially parents of newly diagnosed kids who are like all in for a cure, I think you're setting yourself up for something that, you know,

[00:51:39] Dana Howe: you don't have any control over. Yeah, I think those of us, I mean, I think especially you talk to people who have been around this space for a lot longer. The carrot has been dangled with all the cure talk for so long. People who have been here for a while are like, yeah, okay, call me when it's for real. But so it's hard with that perspective to hear people, especially newer diagnosed and especially parents who are really holding out that sort of everyday hope. Because I want that to happen for all of us so badly, but I'm a little more jaded for sure.

[00:52:15] Rob Howe: And I think that's okay. And I'm an optimistic and hopeful person by nature. So I really do believe that someday it will happen. But at the same time, I'm not going to focus on things that I can't control. Yeah. And I think that's important as well. This has been like most of my interviews, I think I go about 40 minutes, but this has been a really fun one. And I think like time has flown by and I'm looking at this and like, we've almost been talking for an hour. So I want to finish with one last question that I always ask. So if you're running into, running into a someone who has recently been diagnosed and, and, um, or has been struggling and is, you know, not as hopeful maybe, or maybe not as involved or maybe not as exposed to some of the great things like beyond type 1 or the online community. What is the one thing that you're going to tell them? Like, as you are, you know, meeting them in passing, like, and don't have like, uh, an entire, you know, day or, or an hour to sit down with them. What's the one thing you're going to tell them? I want to have a wonderful answer to

[00:53:26] Dana Howe: this question. And I actually have someone in my life kind of like this. And it's something that I literally deal with this experience. I think that I would tell them to reach out and talk to other people with type 1, or encourage them to do so. And I know everybody is at a different stage with their readiness to connect. But even if you're not looking to go all in on a community, nothing beats connecting one on one with another person who can understand, like really understand where you're at. And so I think in that situation, I would just say like, hey, call me, let's get a drink. Let's talk about this and ask for that time or offer my time. Because I really think it's invaluable to have those people in your life. Yeah, couldn't agree more. And, you know, it's

[00:54:25] Rob Howe: just so it's so simple. And to put yourself out there and ask, but, you know, a lot of people, and this is not exclusive to type ones just don't aren't comfortable with it. Like, and I think your whole world opens up when you ask somebody for help, and you really mean it. Because so many people are so willing to help. Yeah, no, for sure. I hear you. Dana, it has been an awesome conversation. I'm really glad that we made this happen. Yeah, me too. This has been really, really fun. I really appreciate this. And I know you're a podcast junkie, and I totally appreciate that because I'm the same way, and I'm sort of a converted podcast junkie. I wasn't always into

[00:55:05] Dana Howe: that. So what's your favorite? What podcast should I be listening to that I'm not already

[00:55:09] Rob Howe: listening to oh man i i'm sure you already like i love the tim ferris show um because i'm a startup guru performance hacky hacker nut um so i'm very type a with that um some people some friends have tried to get me into s town i haven't listened to it yet but it's good it's good do you listen to reply all i don't is that something that i need to to jump on you need to be listening to reply all i think you would really like it okay well then that's that i have not listened to the

[00:55:39] Dana Howe: tim ferris show so i will listen to the tim ferris show and you will go listen to reply all okay well

[00:55:44] Rob Howe: i will definitely send you my favorite uh my favorite episode of the tim ferris show um i have to think exactly which one it is probably naval ravikant he's uh a very cool like investor dude with a very neat perspective but um there's also like so many good ones so um and some fun ones and Mike Birbiglia he has an episode on there as well which is super funny and light and very yeah cool and very uh very uh Mike Birbiglia so um cool well I will definitely listen to reply Ollie you uh you've got me there perfect for our guests who want to connect with you um where do they go where can they find you besides beyond type 1 and beyond type 1 daily yeah you can

[00:56:22] Dana Howe: find me on Instagram at Dana Howe, D-A-N-A-H-O-W-E, or I'm on Twitter also at Dani Howie, which is D-A-N-E-Y-H-O-W-I-E. Both good places to find me. My Twitter is a little bit more type 1 diabetes and advocacy from a personal level. My Instagram is just pretty pictures, but I would love for them to reach out and say hi. Or if they need someone to talk to about type 1, I'm a good person for that too.

[00:56:54] Rob Howe: Well, I will definitely include that in the show notes. And, you know, I think we'd all be a little bit better off if our Instagrams were just pretty pictures. So I appreciate that.

[00:57:04] Dana Howe: That's important to me, honestly, as a social media manager, keeping my personal Instagram as like strictly pretty pictures that I take has been really important.

[00:57:14] Rob Howe: It's great and refreshing and I fully support it. So thank you for coming on the show. And I will look forward to seeing all the great work that you continue to do with Beyond Type 1.

[00:57:27] Dana Howe: Thanks, Rob. It's been super fun. Have a fabulous weekend.

[00:57:31] 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.