Diabetics Doing Diabetes Education with Melissa Gaynor

[00:00:01] Rob Howe: Welcome, everyone. It's me, Rob Howe, and this is the Diabetics Doing Things podcast. I just wanted to toss out some gratitude your way because your continued support is the reason we've been able to get these amazing guests on the podcast. But we're always taking recommendations, so if there's someone you're dying to hear from but I haven't found a way to interview yet, let me know on Instagram or send me an email. I can think of a few, but I won't mention them by name just yet. Also, a word on the street is that our friends at Beyond Type 1 have launched the Beyond Type 1 Power Up campaign. They're inspiring people to get charged up all October long by supporting programs and initiatives that change what it means to live with Type 1. I love Beyond Type 1. I think that their perspective on the Type 1 lifestyle is super refreshing, and so I'd encourage you guys to check it out. So, how do I power up? I think it starts with the way I treat my body. I do my best to put the best things in my body, whether that's food, exercise, vitamins, or insulin to keep my blood sugars on track, but mostly just to feel good. Throw a little daily meditation on top of that and you got yourself a Rob Howe power-up cocktail. But the biggest thing for me is getting to interact with other type 1s. Your comments, emails, and messages fill my cup. And there's no better community than the type 1 community. I have so much in common with each and every one of you. So, in a way, you're my power-up. Be sure to check out the Beyond Type 1 Power Up campaign and share your power up with me. I'm dying to hear it. All right, let's get back to the episode so we can get back to the real good stuff. Hello and welcome to another episode of Diabetics Doing Things. We are telling the amazing stories of type 1 diabetics from all across the world. My special guest, and there's some sort of diabetes device beeping in the background. It's got to be her, I think. Melissa Gaynor. Melissa Gaynor, welcome.

[00:01:48] Melissa Gaynor: Yeah, I just took a little correction.

[00:01:50] Rob Howe: I noticed I wanted to be right right in the perfect spot for our talk so I wonder if that's a thing like I feel like uh I did one episode once and I was like feeling kind of off and I was like man why am I so tired I was like 2 12 afterwards which is you know not super high but enough to make you feel weird and I was like you know what I should probably like have a stable blood sugar uh for these why not you know give me 15 minutes I'll be right there yeah we'll be right in line So you're a first for the diabetics doing things in two ways. Number one, you were mentioned yet not by name on another episode by Libby Russell, who's I Have the Sugars on Instagram and her episode. She talks about meeting a CDE. And you are also the first CDE, Certified Diabetes Educator, to come on the show.

[00:02:41] Melissa Gaynor: I'm so honored to be here as the first certified diabetes educator.

[00:02:45] Rob Howe: Is that not, that's not what the C stands for, huh?

[00:02:48] Melissa Gaynor: It is, no, certified diabetes educator. I just think a lot of us are all diabetes educators, right? And we're out online on social media educating each other. But I actually had to, you know, do you want to know what it actually is?

[00:03:02] Rob Howe: So I'm kind of curious, yeah.

[00:03:05] Melissa Gaynor: Then I'll tell you. Okay, so in order to become a certified diabetes educator, you either need to be a doctor, a registered nurse, like a pharmacist, or a podiatrist, and you have to have a license from the United States or its territories. You can also be a registered dietitian, or they call them now registered dietitian nutritionists. Also, you have to have active registration with what's called the Commission on Dietetic Registration. It's just your license thing. And the other profession you can be, as I'm looking right now because I wanted to double check myself, but it's a health professional with a master's degree or higher in social work from a United States college or university accredited by a nationally recognized regional accredited body. So it's kind of like a secondary thing. So it's like you have one of these like classifications and then this is something that you can tack on just to be like, hey, I'm going to pick up a side hustle. I'm going to be a certified diabetes educator.

[00:04:11] Rob Howe: Right.

[00:04:11] Melissa Gaynor: So most people will be working in the field and then they'll realize they have a special interest in diabetes and then go for the CDE. And in order to do that, you have to do a certain amount of hours educating people about diabetes and then you sit for an exam.

[00:04:30] Rob Howe: Nice. So, you know, you just decided to do that one day. What made you kind of take that

[00:04:36] Melissa Gaynor: plunge? Because you are a registered dietitian, correct? right? That is true. Yeah. So my story is actually, so I was diagnosed with type 1 diabetes in 1995. I was 11 years old. And we'll talk more about that. But I was never very, diabetes was the last thing on my mind. And it was not something I was interested in. But in about 2008, I was living in the city in New York City. And one of my best friends, now husband was diagnosed with type 2 diabetes. And they were kind of freaked out about it and they didn't know what to do. And they reached out to me, of course, and said, hey, you know, can you help us? What can you do? And I was like, yeah, like, come on over, you know. So I taught him how to check his blood sugar, how to read food labels. I was preparing them grocery store lists and grocery shopping and all this stuff. And a few things happened during this time. I myself started to apply what I was telling them. And I realized, hey, I know a lot more than I realize I know. Hey, I'm not necessarily doing all these things. But I also started to see results. So I brought my A1C down. I lost over the course of that year. I was also focused on my diet, 40 pounds, which is kind of crazy. And I realized, could this be a job? Can I do this all day? Because this is really fun. And it's working for me and it's working for you. He came off medication. He was taking metformin at the time and he does not take that anymore. And he follows a healthy diet and exercises. But I just felt like the relationship I had with him and the experience we had together was so rewarding that I literally Googled, how do I be a diabetes educator? So you can, you know, luckily find these things out pretty easy. and the two things that I thought, well, I was like, I can't be a doctor now. I'm not going to go to medical school. It was either nursing or nutrition. And, um, because I was so into, you know, what I was eating and I had lost all that weight, I said, all right, you know, let's, I'll guess I'll go back to school and get a second degree in nutrition. So that was really scary, but I wasn't thrilled in my career at the time. And it was kind of during the recession and people were getting laid off every day. So I think the timing was perfect. I just took a risk and I went back to school and got a second bachelor's degree. My first degree was Bachelor of Arts. So I was taking like, you know, media, guitar classes, no science. And it was really scary, but I went back to Brooklyn College and there were a lot of second degree students there. nutrition is a very popular uh second degree i feel so there was a bunch of us and my whole my goal the entire time was to become a certified diabetes educator but a big part of that diabetes

[00:07:37] Rob Howe: education is of course nutrition well and you know i i think so many people and now and you and i were chatting a little bit about social media earlier like there's so many resources out there for nutrition that, you know, really aren't certified. So I think, you know, when you're, when you're really going down that path, and you're like, either recently diagnosed, or you were working with an endocrinologist, like, what, what do you what questions do you run into? Like, because there's so much junk science. And then there's also, you know, just like a lot of

[00:08:09] Melissa Gaynor: new, like cool stuff that's healthy, but like a lot of people are trying. So like, what do you what do you see when you're talking to people? What do I see when I'm talking to people? everyone's scared of gluten and um you know if you have celiac disease you should be you should avoid it and some people just have this new gluten sensitivity um i think people are just confused um labels are confusing things are labeled organic but what does organic even really mean and if i'm going to eat organic which things should i be buying like organic apples or organic chips and you know there's a lot of confusion as far as that and you know advertisers do a really good job of putting a healthy looking, like my favorite was from when I was in college, smart food popcorn, my roommate and I would always get it. And we're like, well, smart, you know, it's definitely healthy. But I had it recently, actually, it's still delicious, but it's not necessarily the healthiest choice. I think that, well, so because I'm a certified diabetes educator and a registered dietician, I can work for a hospital or a doctor's office, and we can bill and we can accept insurance. so that's a big line and it's not to say that someone who is a nutritionist doesn't know their stuff it's just um this is you can go through your insurance you can do do it this way and we're very science-based so i had to take like chemistry organic chemistry biochemistry advanced blah blah blah like learning about digestion and parts of the body and it gets so narrow that sometimes you're like, wait, am I even studying nutrition? But then when you take a step back, you may hear a claim, a health claim or something, and you can really apply your knowledge and say, well, that doesn't really make sense. Or you can say, oh, I could see how that reaction might occur in the body. And another skill I got from going to school was learning how to read a claim like, you know, diet soda is making you fat or blah, blah, blah. Like that's blah, blah, blah. But do you know what I mean? Like read a claim and then click on the study and then you can analyze the study and say, all right, so this study was done on like five rats and they were in a cage and they're dumping diet soda on them for a week. I'm making this up. But you know what I mean? Like some studies just don't make sense and aren't, they aren't strong. And the results, you know are just headlines and then if you kind of read through sometimes it's like scientists need to do further research to determine whether or not this is true blah blah blah but nobody reads that part everyone reads the headlines right it's uh i think i think very popular right now there's a documentary on netflix about it's called what the health i think uh have you heard anything about it no okay well what's what the health it's it's very it's very headline based uh it's like a it's on veganism and like um you know anyway it's it's very it's propagandic in the way that i and i haven't seen all of it but i've just been following some of the different storylines different nutritionists different health gurus that are like arguing back and forth about it and that's the thing is like no one's no one's clicking watching the documentary and then going and reading the study you know they're just because we the way we consume media most people

[00:11:26] Rob Howe: just believe it. Just like SmartPop. Oh, it's so good, though. It's so delicious, right? 100%.

[00:11:33] Melissa Gaynor: So yeah, I think for, you know, from my RDCDE perspective, I have more of a scientific view. I think we're always going to conferences and learning the latest things about what's going on as far as like studies they're doing. And, you know, recently, where I'm working now, we're talking about how to give insulin for protein and, you know, learning, you know, everyone's playing around now. Everyone's with pumps using different basal rates and stuff like that where, you know, it's not just carb counting, it's more, but it's advanced. So it's only for certain patients right now. Right. Well, cause there's, you know, there's, there's everybody's so different. It's always hard to say like, what does what, you know? Uh, what, what are you guys finding in terms of like dosing for protein? I've always been curious. I can, I'll actually send you this paper that I'm looking at. I'm not going to say off hand cause I don't want to give you the wrong information, but once it's above a certain amount of grams of protein, you would actually bolus like your ratio for 15 carbs or something like that. But I'll send you the exact thing. And that tends to work. And some people only need to do it in the morning. and also you have to consider fat. Like we had some patients who if they wake up and they just have two eggs, they need to take some insulin for it.

[00:12:52] Rob Howe: Yep.

[00:12:52] Melissa Gaynor: I'm one of those people, Don Phenomenon, which is just like a fun thing to say, Don Phenomenon. I say Don, but I like Don.

[00:13:00] Rob Howe: Right. It's like a person. I don't know if you're from Brooklyn, but you're from New York, obviously, right?

[00:13:06] Melissa Gaynor: Yeah. I've got the Long Island, Brooklyn deadly combo.

[00:13:11] Rob Howe: So, but yeah, so Dawn Phenomenon, all that stuff.

[00:13:15] Melissa Gaynor: But my other thing is, I don't know, I feel like my favorite diet is what works.

[00:13:23] Rob Howe: Yeah.

[00:13:23] Melissa Gaynor: So if you find that, you know, cutting out whatever, whatever, or doing paleo or doing whatever it is that works for you works, then that's, that's great. And a lot of people come and they're like, they just want me to give them a piece of paper. Tell me what to eat. Right. I'm like, no, tell me what you like to eat. And let's keep track of your numbers and we'll see how you respond. And we can figure out how to kind of manipulate that. And if you want to have cake or you want to do pizza or you want to order Chinese, like let's let's keep records and let's see what happens when you eat it. Because, you know, you know, you order sushi and you're like, oh, man, every time I eat sushi, my blood sugar is high. And you just take a bunch of insulin and you end up low. And then you're like, oh, whatever. And then like, do you remember next time? Probably not. You're like, oh, I think I took too much last time, blah, blah, blah. Now there's apps. There's note sections in your phone. I tell people, just write it down. I ordered sushi. I was sitting on the couch all day or I came from Iran, whatever it is. I pre-bowl list. I didn't pre-bowl list. There's so many factors. I know it's kind of exhausting, but if you just write it down, the next time you can look at it and say, or come to me and I'll say, let me suggest this for next time. Or this is what works for other people.

[00:14:40] Rob Howe: yeah that i've yeah i think you know you are what you measure right what however you measure it there's no you know i remember when my first endo gave me like these printed out excel worksheets basically she's like okay fill in all your you know data from the last six months i was like right i was like nah nah i'm good but uh yeah i mean like oh okay i'm gonna eat sushi and i'm gonna give myself this ratio and this many carbs and then two hours later what's my blood sugar

[00:15:09] Melissa Gaynor: like you can prepare for everything yeah if you really want to i mean and if you really want it within a certain you know reason um well that's the thing i try to like keep it real i'm like i know you're not going to write down everything you eat but if there's one thing that you eat or a place you like to go and you know every time you have it it makes you sick like it doesn't have to be like that we can make this work for you and you know it's not like some i remember going to the doctor and they'd look at my log and be like on Thursday, you know, September 23rd at five, like, what'd you eat for dinner? Why was your blood sugar high? You know? And I'm like, I don't know. Leave me alone. So I remember those appointments. And so much of the appointment was focused on the A1C that I think for me, like going to the endo, I was like, just like hoping my A1C was like somewhere under eight. And if that, if an end, if it was, and I would just go home and everything would be fine where, you know, now there's so many, there's so much more data and tools and Dexcoms and pumps and things to focus on. Um, I feel like you can get more out of your appointment. I actually tell my patients, I'm like, you're going to leave here today and you're going to learn something new about nutrition or diabetes that you didn't know when you walked in. That's my goal for you. Like if their A1C is perfect or if it's, you know, 14, I see by perfect, I mean in range, but you know what I mean? Yeah. I mean, and let's talk a little bit

[00:16:40] Rob Howe: about perfect too, right? Right. What does that even mean? What is that? Yeah. Exactly. And I think,

[00:16:46] Melissa Gaynor: you know, that's the hardest part about social media. We were talking about that a little bit um i love when people share highs because it's like oh yeah like we're we're all still figuring this out there's just there's still a little bit of variability or sometimes a lot of variability and what goes on um because it means that we're not all perfect right yeah as the minute that word came out of my mouth i was like no it's like please take it back take it back just delete that thank you edit that out so that's the thing they're all just numbers and it's like right you see this perfection on you know someone's thing is just like a straight line and you're like what's happening there or like another person that maybe you know they're 300 and they're like help like what's going on that I find it it can be helpful but it could be disruptive it could be upsetting it could be competitive so many things so I actually have a hard time posting myself because I was saying I want to be a role model as a CDE but I also want to be a real person and be like hey I'm a CDE and I'm eating pizza and my blood sugar was you know 250 300 after and maybe it's a pot or maybe it's what I ate but I'm moving on so you don't want to like brag too much you don't want to complain too much but you also want to teach so I find that a little hard on social media. I'm still trying to find my social media voice without being braggy or cheesy.

[00:18:18] Rob Howe: Yeah. Not easy. Not easy to do. I try to, you know, also changing people's minds about stuff on social media is like the most difficult thing and pointless exercise of all time. So that's true. You just get sucked into that trap. Let's go back a little bit. Unless you had another

[00:18:37] Melissa Gaynor: thought because we're no I didn't know what it was actually hey I have that all the time so I

[00:18:42] Rob Howe: relate um you weren't always open about your diabetes you hid it for a while let's talk about

[00:18:48] Melissa Gaynor: that yeah let's talk about that so I was diagnosed when I was in sixth grade and I actually called my parents last week to kind of go over what happened because I don't know how it's possible I was talking to another friend with type 1 she who she was diagnosed when she was four and she's like I remember everything. I was like, I don't really remember. Like I sort of remember, but, um, basically I didn't really want to tell anyone. And my, I, I remember like my parents were so upset and maybe I felt scared or embarrassed, but my dad actually told me the sweetest thing that I said. It was like a month and I was 11. So it was like a month after I'm diagnosed. And this is an 11 year old in the 90s not one with like an iphone and internet and access to things like i was wearing a looney tune shirt probably and like catching frogs outside and i and i said to him um you know every everyone has something bad happen to them in their life and if this is what's gonna be bad for me then i'm okay with that or something like that i thought that was really cute. But I think that made me fearless, but it also made me very private about it. So I never told anyone actually until I think my senior year of high school. And what's funny about that is obviously people would know because I lived in a small town. I was at a school when I was diagnosed, I'm sure. I would leave to go to the nurse to check my blood sugar. I was allowed to eat snacks in class if I needed to, but I never actually told anyone or had maybe one or two friends, but it was my little secret. And I think it was senior year and I, we drove the perfect place. We drove with, uh, some friends on lunch and we went to IHOP and we were at IHOP and I didn't order anything. Maybe my sugar was high. Maybe, I don't know. And I, and I had my diabetes coming out and I said, guys, I want to tell you guys something. I have type 1 diabetes. And my friend Scott looked up at me and he said, yeah, we know. You've had it since sixth grade. You were out of school for like a month. And I was like, wait, what? You all know? They're like, yeah, you wear that pump thing. And I've been wearing my pump and this is the 90s and it was Medtronic. It used to be thicker and brighter pump. And I just used to leave the clip hanging out of my jeans like it was a pager. So I guess you could say it went smooth. And then I was all excited to kind of talk about it, but also a little embarrassed. And it was good because then I went into college and I met my roommate and was like, hi, I'm Melissa. I have diabetes. Just because I was so nervous. what would she think when she saw my medical supplies? Like, how am I going to tell her about, like, she could share my snacks but not my juice because it's medicine. And I remember having a conversation with my doctor and getting prepped for that. And I don't know if it was her or one of my suite mates, but they were like, oh, cool. Like, can I check my blood sugar? I was like, what? Can I try checking my blood sugar? Okay. Why would you, you know, I hated doing it. So I was like, yeah, go for it. And I ended up meeting another guy in my dorm that actually everyone called him Pump and he wore a pump. Then we became friends. And then, you know, so I went from being so secretive about it, not telling anyone, talking about it in college. And now, you know, I'm a CD posting pictures of my Omnipod on Instagram. So it kind of came out on the other side.

[00:22:28] Rob Howe: That's dope. I love that. Yeah.

[00:22:30] Melissa Gaynor: I mean, I think a big part of the reason I wanted to become a certified diabetes educator is when I was helping my friend out, I realized I never had this. Like, I never looked forward to meeting with my endo or my CD. I never really bonded with anyone. And I kind of wished, I was thinking about, you know, type 1 beyond. Yeah. Like how they live beyond. Like I was thinking about like, this is how I'm living beyond. But I really do wish I had like a time machine and I could go back in time and say, Melissa, don't worry. Don't be embarrassed. Don't be ashamed. Like be proud and, you know, tell people.

[00:23:07] Rob Howe: Well, I mean, like you said earlier, like it's new. Like the diabetes is cool movement is new.

[00:23:14] Melissa Gaynor: Yeah. So it wasn't cool.

[00:23:16] Rob Howe: Right. So you don't want to tell anyone. You don't want anyone to worry.

[00:23:20] Melissa Gaynor: I'll place a lot of the blame on diabetes being cool on Beyond Type 1 because they have humanized diabetes. and like made, you know, you see the faces of it. And they've also put pressure on because they're there. And because the medical and medical device marketing worlds are so reactive, they've now tried to do the same thing. So it's like now like these voices are much more apparent. I remember being shocked like two years ago when I was looking up diabetes accounts on Instagram. I was like, why? Like there isn't anything. Like where? What's going on? And then I found, you know, a couple people. I found Libby. I found Beyond Type 1. I was like, wow, like there's really not that many people. This is crazy. And then it just boom exploded. It exploded. It's totally new because I made one, I think. I went to a diabetes sports camp for adults, which I could talk about a little bit too. A few years ago when I got home, I was like, I'm going to track my progress, you know. And I think I got immediately 300 followers. And to me at that time, I was like, oh, my God, I'm famous, you know. and then you made it um I did it yeah no but and I connected with all these people and I happened to have the allergy to the Omnipod sticker and someone was like try Flonies and I was learning so much things I would never learn at the doctor and I'm like this is awesome and then I kind of stopped doing it and I recently got um back into it because I figure you know why not and um yeah, it, it, diabetes is totally cool. Like show your pod or maybe it was, um, what was her name? Uh, miss Idaho had the tandem pump and she was wearing a bikini and she had the pump out. Did you see that a few years ago? Uh, maybe trying to think, I think it was like 2014. I was working in at a endocrinologist actually at the endocrinologist office. I was diagnosed that is where I ended up working for a while. And I remember printing that out. And then I looked up a list of celebrities with type 1 and would like, you know, what is it? Jay Cutler has type 1.

[00:25:28] Rob Howe: He does. Football.

[00:25:29] Melissa Gaynor: Yeah. So I would just, you know, I'd see who the kid I was and get to know them a little bit. And like, did you know? And then we had Nick Jonas.

[00:25:36] Rob Howe: So then thanks, Nick.

[00:25:37] Melissa Gaynor: Yeah.

[00:25:38] Rob Howe: Big, big thanks to Nick for making diabetes really cool. Because Jay Cutler, like, you know, Jay Cutler is kind of a shithead. I'll say that publicly.

[00:25:47] Melissa Gaynor: I don't know anything about sports, but he sounds horrible.

[00:25:51] Rob Howe: Yeah, I don't know. I got beef with Jay Cutler. We'll just say that.

[00:25:54] Melissa Gaynor: Okay.

[00:25:54] Rob Howe: I just think he's never really been a – I was bummed when he got diagnosed because he got diagnosed late in his life or later. He was like 25 in the middle of his NFL career.

[00:26:06] Melissa Gaynor: Okay.

[00:26:08] Rob Howe: They were talking about this, and he just could not be a bigger douche. And so it's just like he even before he was diagnosed. And so he's just like not a, you know, and I'm not speaking towards the work that he does, because I'm sure he's got a foundation or he's doing amazing things for type 1. But at the time, I was like, man, like we really got the worst. We get the worst possible NFL. We need better. I was like, well, why can't Peyton Manning be type 1? That was my initial thought. And if Jay Cutler, he's not. If Jay Cutler ever listens to this, I will look him in the eyes and say it. because I'm right. I'm right on this. Oh my goodness. Look what I did. This is now controversial.

[00:26:46] Melissa Gaynor: There's hot takes coming out of nowhere over here. Yeah. Things are getting a little wild.

[00:26:52] Rob Howe: But yeah. So it's nice to know that there's other people though out there doing things like being professional athletes or beauty queens or pop stars. And they're living with this thing too,

[00:27:04] Melissa Gaynor: So especially when you're first diagnosed, because that was my job, a lot of my job at my last, the last place I worked where when you got diagnosed, you met me. And I was like, hi, like, it's okay. I have it too. Yeah, like more than 20 years. Yeah, I know I don't look like it. Yeah, you're going to be fine. And it was a good relief for the parents. They're like, wait, what? How long? and you know for the kids I'm still you know young enough that they would say oh wow you know like so I got to be their role model and um talk about things that they might not talk talk about with their doctor and I'd be like ask me anything like anything I'll be honest with you you know

[00:27:49] Rob Howe: so well and I think like humanization is so important um because you know I was diagnosed know it was in 2005 so like google was in its infancy so i was like who has type 1 diabetes and like plays sports or you know does anything and you know back then it was just harder to find people um and now you know kids who are just you know social media nuts can get on there and find

[00:28:13] Melissa Gaynor: anybody you know right and i think that's what's so cool about you know this age of connectivity in this diabetic online communities, you can find people who,

[00:28:23] Rob Howe: and that's why I started Diabetics doing things because there's, you know, you can be, it doesn't matter who you are. You could want to be a pilot. You could want to be a diabetes educator. You can want to be a doctor. You could want to be a football player. You want to be a writer. Like there's somebody out there like you who's living with type 1. And that's what's so cool now is that they're literally just a like text away. I think it's good for parents. I think it's good for kids. I think it's good for adults. It's at any age to really discover this.

[00:28:54] Melissa Gaynor: And I feel like with type 1, like it's there and you have like ebb and flow with like how into it you are. Like sometimes I'm just like tracking and my blood sugars are on point and I'm testing and other times I'm just like, oh, you know, I just kind of, it's not number one on the list. I'm always taking care of myself and, you know, being smart. But there are times when I'm more, I guess, into it or a little bit like almost like obsessed with it, like especially since the Dexcom and now I have the Apple Watch. Like I'm always looking at my blood sugar and sometimes it's good to just not, you know, not completely not look at it. You've got to find that balance. And it's hard on a day to day basis. So I don't know. I really do like the fact that there's so much out there for people to look to because that's another complaint that people have. like oh my doctor never told me that right do you ever that's that's so disheartening to me sometimes like when somebody's like yeah i never heard that but also like doctors are people

[00:29:58] Rob Howe: right so let's see here's my take on that okay so doctors are people and you have a 30 minute visit or maybe probably about 30 minutes maybe an hour if you're gonna meet with some other people on the team and you're there every three months and you know you start from diagnosis and you're going back and I think about myself when I was a kid like they might have said some stuff but I probably wasn't listening to everything and we might have been more focused on like blood sugars or patterns and not the fact that when it's hot out you know you might have more low blood sugars because your insulin sensitivity is increasing or you know what I mean like there's so many things to talk about and you might not have been ready for it too. Like for me, I always wanted to exercise. Well, no, that's not true. I didn't always want to exercise, but when I tried to exercise, I always went low and I always had to eat so much food and I would gain weight. And I always struggled with my weight after puberty. Like I don't know if it was an insulin thing or it was like I got a pump and I could eat what I wanted thing. Or I was eating a lot of like, quote, remember, did they give you free foods in 2005? Like cheese was free.

[00:31:09] Melissa Gaynor: like you need insulin of course yeah like there's no such thing as free that's the bottom line like everything water and air are free like everything's got some calories in it and in diabetes zero plus zero plus zero isn't zero right so you need to be aware and i remember them trying to talk about calories with me at one visit do you want to see the nutritionist but my carb counting was excellent and i was like no like this is enough thank you you know like i wasn't ready to like learn about calories until 2008 when I started to look into nutrition or, but I was saying with exercise, I couldn't like figure it out, but I don't think insulin on board was a thing. Like it wasn't a thing on your pump and maybe somebody told me about it, but I didn't absorb it. So I didn't get why I kept going low sometimes when I would exercise and other times

[00:31:57] Rob Howe: not. And I didn't know how to make it work. Well, and like, think about the emotions associated with exercise anyway. Like it's, it's hard to get up and like, you know, wake up early or go after work. You're tired. There's a million other things you could be doing. You don't see immediate results, you know? So throwing another, so throwing another wrench, like consistent low blood sugars. It sucks. Like it's easier not to exercise. You could have a straight line because then if you're going to exercise, you need to fuel, you need to figure out your insulin. You

[00:32:26] Melissa Gaynor: need to, there's so many things. So that, that's what I was thinking. The internet is a great thing because so I met my husband and at the time I think I was doing spin a few times a week and I was sort of I sort of knew what to do but sometimes I would spike but I was disconnecting and then I would take a long shower and like I just didn't realize and then of course you're going to be high a couple hours later like you weren't connected um and then I ended up switching to the to the Omnipod for that but um he was really in and he still is like really into working out and fitness and they have this thing in New York called ClassPass where it's the coolest thing ever. So you can go to all these, you can go to pretty much any gym in Brooklyn, New York City, Queens. You just have to sign up in advance and cancel within 12 hours or you get a charge. Right, we have it here in Dallas too, but I feel like in New York, I think is where it started. It's insane. Because there's a million gyms. There's so many gyms. So you could do kickboxing one day and yoga another day and spin another day and then a boot camp. And I was just like, that sounds great. But like, I don't even want to do that. Like, I kind of figured out spin and I know how to go for a run. I just don't think I can. And I remember he was like, there's got to be a way you can do it. And I was just like, no, there's no way. Like, it won't work. I'll gain weight. I'll go low. And I think we were just sitting on the couch at his apartment and I had my computer and we were Googling and I came across diabetes training camp. I was like, what's this? And it's a camp and it's right now based in Lancaster, Pennsylvania. And it's an adult sports camp for people with type 1 diabetes.

[00:34:08] Rob Howe: Sick.

[00:34:09] Melissa Gaynor: And it was saying like some people are coming and they just want to learn how to go for a walk. And other people have done marathons or Ironman or triathletes. And I remember I was like, oh, wow, this is neat. And he's like, you're going. No, wait, what? I was like, I need to think about it. He's like, you're not thinking about it. You're going. And long story short, that completely changed my life. I'm like a different person now. You go for a week. It's like sleepaway camp. And when I went, it was at Franklin and Marshall, which is a college. So you live in the dorms. And every morning you go to breakfast. And then there's activities you can do. You can go on a bike ride, you can do yoga, you can go swimming. And then in between the activities, they have meals and then a lecture. So there'd be like, what's new in diabetes technology lecture, or what nutrition lecture, or mental health skills lecture, and you can go to as many things as you want or not go. And everyone pretty much who works there has type 1 diabetes. Like the coaches, the running coach had type 1 diabetes, and the nutritionists all had type 1 diabetes. And at the end of that summer, the head endocrinologist doctor, who doesn't have type 1 diabetes, which I find so amazing because I don't know how he has so much love for us. He's an incredible person, and he really gets diabetes. He invited me to come back last summer and work as part of the staff. so a lot of the staff actually started out as a camper you know with type 1 diabetes and then comes back as staff as you know a nutritionist or uh sports coach or on the medical team there's a few doctors there who have type 1 so how cool is that to go on a bike ride with a doctor who has type 1 diabetes uh you know just a bunch of people with type 1 diabetes a nutritionist who's type who has type 1 diabetes and a nurse.

[00:36:14] Rob Howe: What a resource.

[00:36:15] Melissa Gaynor: If you're ever going to push yourself, this is the ride. And everyone's got sugar in their pouch, and there's someone who's on med, on staff, who's carrying whatever we need, and we stop maybe every 45 minutes, check blood sugar. And I remember the first time being like, eh, I'm not going to check. And then I was like, wait, what am I doing? Literally everybody's checking their blood sugar. Might as well. and you really learn how to, you feel, we call everyone else without type 1 diabetes, at least that summer, normals. You feel normal. Like, it's normal.

[00:36:51] Rob Howe: Muggles too, right?

[00:36:52] Melissa Gaynor: I haven't heard that one. We just call them normals. But it's normal, like, you're normal, and, like, everyone's beeping. Like, beep, beep, beep, that's the Medtronic one. Or you heard my Omnipod, like, beep, beep. And, like, who's beeping? And who's, the Dexcom's going off. Are you low? Are you high? and everyone's, do you need sugar? Do you need some insulin? Anyways, sorry.

[00:37:13] Rob Howe: No, no, no. It's interesting, the beeps. Let's talk about the beeps because I've never talked about them on the show. Because my Medtronic one, I have a friend with a Medtronic, the same Revel Medtronic pump that I've got from whatever the 80s or whenever it came out. But that's another story. It goes that beep, beep, beep.

[00:37:36] Melissa Gaynor: Yeah.

[00:37:36] Rob Howe: We both feel that we're like clairvoyant, like we can hear it through walls. And so whenever we're in the same like building, I feel in one of them goes off like the other one, I feel like it's like always there. Like, what's up? Like low reservoir or you temp baseling? What's up?

[00:37:52] Melissa Gaynor: I actually so I was on Medtronic for 16 years. So I know that beep, beep, beep, like anything. And I was on the subway the other day and it kept getting stuck, you know, the trains being momentarily held. It's like the worst. you're trapped in there and somebody's suspend was on and i was like trying to make i had my Omnipod out of my arm so i was trying to show it and like look around so someone would see me and be like oh i have a pump too but i i never found the person but uh yeah we were sitting there for a while and it kept going off i was like are you suspended i think it was the suspend one but i just hope they seemed okay nobody uh nobody asked for help but yeah that the beeps peeps with beeps is what we called that's what we call ourselves at camp yeah i remember coming home and just it's sad when you come home because you're like wait i'm the only one peeping so i can never wait to go back to camp i'm so excited for the summer um and they they're starting a teen camp too actually for teen athletes that's uh launching it's in september i'm gonna be

[00:38:59] Rob Howe: working it's just a weekend the adult camp is a full week oh i think there's a lot of stuff like this out on the west coast it's just not really on the east coast i don't know maybe i'm making that up i feel like people are more outdoorsy maybe they're more outdoorsy but i do feel like

[00:39:14] Melissa Gaynor: i i do feel a little bit of fomo like fear of missing out from the new york diabetes community i feel like there's so much stuff that happens there whether it's events yeah like in i feel like JDRF because their headquarters are there and maybe it's just because Libby's there and Lauren Bongiorno is there and there's like, yeah, they're just hosting it beyond type ones. So, you know, maybe it's just like, you know, you're there.

[00:39:37] Rob Howe: I've talked to three or four other T1Ds from there. It's just a big city, right? So obviously there are more type ones there, but I don't know. I just feel like it's a much, it's a more developed community, maybe more mature community than some of the other places across the U.S.

[00:39:52] Melissa Gaynor: I think that's, it's all social media and it's all coming together because I remember I found Libby maybe two years ago and I was like I have the sugars like that's the best name ever I have the sugars too like who is this person and then through all the people on her thing I started finding people and then finally through work we were having a table at some JDRF event I forget what it was and this was in the winter of this year and I went up to her and I was like, hi, you don't know me, but I know you. I follow you on Instagram. I'm sorry if that's weird. She was just like, no, that's great. You know, what's your Instagram? And I was just, I don't know. I feel like it makes diabetes feel less bad and it makes the world feel smaller. And just because I'm a CD with type 1 diabetes doesn't mean I have all my type 1 people around me because it's more like they're my patients. I work in pediatrics. I should probably mention that. So I work with kids. So it's just good to have someone around your age in your zip code or neighborhood that's doing what you're doing just to, you know, check in with and say, you know, this stinks or had a good day. Man, I relate to that 100%. That's my favorite part of this is I get to talk to people that I don't know anything about. Like I've never talked to you before, right? But we instantly have a a million things in common, a million experiences that are similar. How awesome and rare and fun is that? Uh-huh. Yeah, no, there's a meme I've seen on Instagram, though. It's like when you meet someone else who has type 1 diabetes, and then it's like two people hugging. It's like, do we just become best friends? Right. But that's really what happens. You meet people, and you just totally bond. Unfortunately, my closest friends from camp are in California or in Albany. and for a while we were all following each other's uh blood sugars on Dexcom because we did it at camp right because we were like just watching each other and it was too much beeping it was making it was waking me up waking my husband up and I was like am I low or is Molly low oh my goodness but it's it's cool also to get that text message or that phone call like hey so you had a rough morning are you okay you know so but it was too much beeping so so it had to

[00:42:08] Rob Howe: stuff but um it's just good to have that that follow the dexcom oh 100 i and i'm uh one of my friends is giving me uh his g4 uh i gotta come up with some sensors but i'm working on that

[00:42:22] Melissa Gaynor: uh because i don't have a cgm currently but i that's one of my 2017 checklist wait you don't

[00:42:28] Rob Howe: have a cgm at all i don't how are you even living i know right i'm just like you living i'm stone

[00:42:35] Melissa Gaynor: age out here wait so this is gonna be such a cool year for you because I didn't really even want it when I got it I think it's gotten better like it's more accurate and I was like what is this thing on my skin it's itchy it's beeping it's stupid I hate this and now if I have it off for like more than two hours like even during the warm-up I'm like oh my god what's you know not that that's healthy but it's just so especially if you're an active person it's it changes your life And like, so after camp, I learned how to, you know, incorporate exercise into my life. And I started, I joined up on ClassPass. And now, you know, I can sign up for a 530 boot camp or wake up at 7 a.m. and do a spin class. And I kind of know what to do. You know, nothing's 100 percent. Obviously, diabetes, you do the same thing over and over and over. And you might not get the same result every time. But I kind of have a plan. And I can look at my decks and I can look at how much insulin I've taken and think about what I've eaten and, you know, say, okay, like I figured out these adrenaline. If I do any sort of like adrenaline activity before 9.30 a.m., I actually need to take insulin. But if I ran, I wouldn't need it. Or if I did the same adrenaline boot camp before 9.30 a.m. in the afternoon, I would need like 20 carbs to get through. but uh it's all been trial and error and it's been you know they're frustrating times but now i can like walk in and be confident and if i go low i go low and if i end high i end high but i just love doing these classes and you know physical activity it's i don't know it makes you feel good it's good for you right like yeah literally like actually good for you yeah literally good for your heart but i think you know we have this mental toughness with type 1 you've got to be tough and you got to have a good sense of humor and you got to be able to just like move on you know yeah short memory yeah exactly and it's okay to get upset and it's okay to get frustrated because it's upsetting and frustrating and like that's where the whole like you know what are people showing on instagram either a victory like hey check these sugars out or like oh man what this

[00:44:53] Rob Howe: is the worst day ever right so that's diabetes man isn't it and it's so refreshing to hear that from somebody who like is a certified diabetes educator right like you're the authority and

[00:45:04] Melissa Gaynor: that's what that's what that's that's that's it it's diabetes it's it's a it's a riddle sometimes that's my message yeah my certified message i like telling parents and kids that just because you know sometimes the parents will get frustrated and i can say like listen like They're doing pretty good considering.

[00:45:22] Rob Howe: A lot of type A, type 1s out there for sure.

[00:45:25] Melissa Gaynor: Yeah. My dad actually, he told me, I sort of remember, he's kind of like that where he's like, when you were diagnosed, I said, tell me what you need to eat. I made a spreadsheet and I wrote it down and we were doing exchanges at the time for carbohydrates.

[00:45:39] Rob Howe: Did you?

[00:45:39] Melissa Gaynor: Right.

[00:45:39] Rob Howe: You didn't count carbs, like 15 was one.

[00:45:41] Melissa Gaynor: He made a spreadsheet and he would fill in what I had to eat.

[00:45:46] Rob Howe: Really?

[00:45:47] Melissa Gaynor: Is that type A, right?

[00:45:49] Rob Howe: Oh, for sure. Yeah, and like, you know, 20 years ago, a spreadsheet was like, you know, might as well have built an entire database mainframe drone.

[00:45:57] Melissa Gaynor: I know, he was a genius.

[00:46:00] Rob Howe: There was no Excel.

[00:46:03] Melissa Gaynor: Yeah, I did this by hand.

[00:46:06] Rob Howe: He probably did.

[00:46:08] Melissa Gaynor: Oh, my goodness.

[00:46:09] Rob Howe: The amount of, like, you talk to a lot of recently diagnosed patients and parents. what do you I always ask my question like if you had one thing that you could tell them because you're in an airport they're going to shut your gate door to your gate in 30 seconds and you can't miss your flight um what's the one thing you tell them but I mean you talk to people all the time so what's you know what's the most important thing for somebody to know

[00:46:37] Melissa Gaynor: what's the most well something I tell people is not to be upset again like with the number and it only takes 15 minutes for insulin, you know, fast acting insulin to start working. So you can see a number and get mad and get upset, or you can just take some insulin and be on your way to, you know, a lower number. But I actually thought of something better, I want to say. I think, yeah. So something I've said to a lot of people who are very upset at diagnosis is, you know, the truth is you can't change the fact that you have type 1 diabetes. There's nothing that we can do about that right now. But you can change the way you look at it, you know? Right. So it's not going to go away, but you can change how you look at it. Like, listen, I have this thing, but you know what? I'm going to be tough about it, and I'm going to do what I have to do. Or I'm going to, you know, you become a more empathetic person. you become a tougher person you have to have that sense of humor and look at me i got a career out of it like who would i be if i didn't have type 1 diabetes i have no idea you're preaching to the

[00:47:51] Rob Howe: choir there like i you know people are like oh you don't don't you want to cure i'm like yeah but i'd be so boring well that's what i was thinking um because even with the new Medtronic, uh, the 670G, they're like imagine waking up with a perfect blood sugar and it's like a self-driving

[00:48:07] Melissa Gaynor: car and I'm like but who would I like what would I be thinking about I mean it sounds nice what would I have to worry about right like what are people like if I'm like writing a note I'm writing down like my sugar or I'm checking my sugar I'm looking how much insulin I took or maybe even like if I know I'm going out this weekend and we pick the restaurant like maybe I'll look at the menu and just in advance say like oh yeah there's stuff that if I ate that I wouldn't even have to worry and like, oh, maybe I'll experiment with this. Like I'm always kind of planning my exercise. So, you know, just use it as a strength. Use it as something to make you unique. Use it as something to make you tough. And, you know, I have one of my patients now. She wants to become a doctor. And, you know, I have another little girl who told me she wants to be a scientist. So I think back to my 11-year-old self who said everyone has something and this is what it's going to be, it's not so bad. I think I thought that that was the only thing bad that could ever happen, so I became very fearless and climbed glaciers and went skydiving in my teen years. Maybe I was 20, but it doesn't really work like that, just so you know. Be careful. But yeah, it made me fearless and it made me have the career I have today. Ignoring it and being upset isn't going to get you anywhere, but you can take advantage of the tools you have and you can make the best of it. And now you can get on social media and connect with people all over the world and, you know, empower each other, make a friend.

[00:49:42] Rob Howe: And you should.

[00:49:43] Melissa Gaynor: I, you know, I'm so glad that I did. I don't, you know, I'm sure you feel the same way.

[00:49:49] Rob Howe: Like, then you wouldn't have had that classic moment where you get to walk up to Libby and be like, hey, I know you, but you don't know me.

[00:49:57] Melissa Gaynor: but you're the sugars. Yeah, I think she was like, I'm sorry, my sugar's actually going low right now and she had her dex. I'm like, no, it's fine. And then we ended up meeting again recently at like a JDRF thing or I'm not even sure what it was. But it's all because of social media. There's another girl in New York, Liz, who does, she's like a spin coach. I don't know. I started finding, right, so I always thought I couldn't be fit because I had type 1. But now there are all these fit people with type 1. And I'm like, I want that. So they're inspiring me and I'm pushing myself. And I've definitely noticed like I've become weight, you know, become stronger and just like I'm willing to try anything, you know.

[00:50:40] Rob Howe: All right. And like it's so cool that like other T1Ds are so willing to give of themselves for each other.

[00:50:47] Melissa Gaynor: Totally.

[00:50:48] Rob Howe: Yeah.

[00:50:48] Melissa Gaynor: so rare I feel like in today's world which is sad but it's cool to have like you know legitimate like real life like brothers and sisters who will like just give you their time right give you time give you tips I saw something on Facebook not too long ago and someone was babysitting or something and in New Jersey for their cousin and their punch site fell out and they didn't know what to do and the parents wouldn't be home till whenever and someone else was like where are you like what town and they were like i live 10 minutes away i'll bring you a set i was like oh my god that's so great so cool how awesome is that and yeah it was just like a group of people i don't even know if they had known each other in real life but we all kind of each other just from being in this little facebook group um or i saw someone else post once and i was like they they broke their you know lancing device and i was like uh i work in the city and i have like a whole bunch in my office if you want you know could loan you on or you could have it actually forever but um and they ended up somebody they're like somebody actually already mailed me one like a free Genteel thing i was like who does that we're all so nice to each other right so awesome so yeah well we're all just diabetics doing things i guess i guess so uh wow you

[00:52:08] Rob Howe: literally couldn't script a better like wrap up for an interview uh than that right there I just linked if this was a video

[00:52:15] Melissa Gaynor: yeah

[00:52:18] Rob Howe: I paid you under the table for that

[00:52:20] Melissa Gaynor: I'm going to send you a bunch of diabetes supplies

[00:52:22] Rob Howe: yeah let me get them test strips

[00:52:24] Melissa Gaynor: no kidding

[00:52:28] Rob Howe: well thank you so much for coming on the podcast Melissa it was I mean you're such a refreshing take and personality on living with type 1 and I'm so glad that you get to impact and touch new and and just regular living with type ones, young and old type ones, you know, in your day-to-day life. I think that's super valuable and we're lucky to have you.

[00:52:52] Melissa Gaynor: Oh, thank you for having me. I enjoyed our chat.

[00:52:56] 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.