Touched By Type 1 Diabetes with Elizabeth Forrest: Empowering the Chronic Illness Community - S2 E13

Becky Miller: Hey friends, and welcome back to Autoimmune Adventures, where we discuss the importance of a compassionate community where,when you're dealing with chronic illnesses. Today's episode is one that's especially close to our hearts. As three sisters who watched our dad live with type 1 diabetes, we know firsthand how much strength, support, and resilience it takes, not just for the person with the diagnosis, but for the whole family. And that's why we're beyond honored to introduce you to someone who truly embodies the word powerhouse, Elizabeth Forrest.

Elizabeth Forrest: Awe, thank you. What a nice introduction. Happy to be here.

Stacy Griffin: Elizabeth is the founder of Touched by Type 1, a nonprofit that's changing lives by empowering kids, teens, and young adults living with type 1 diabetes. Elizabeth could have let her diagnosis define her, but instead she used it as fuel to build something incredible. Her mission is rooted in advocacy, education, and real hope. And the community she's creating is nothing short of inspiring.

This one's going to touch your heart and light up a fire in your soul. We are so excited to have you join us. Let's start at the beginning, Elizabeth. can you share the story behind Touch by Type 1 and what inspired you to create the organization?

Elizabeth Forrest: Absolutely. So, I was 10 years old when I was diagnosed with type 1 diabetes. I had been out of school for a whole month sick at home. And anyone that knew me as a child, I was not someone that stayed home.  I loved going to school. I loved being in the classroom. I loved being around my peers and teachers. And for me to be home for that whole month was something significant. My mom had taken me to the family pediatrician multiple times, three separate appointments, just persistent that something wasn't right. She couldn't quite put her finger on it. Each time was sent home to ride it out, let it run its course. Could be a stomach bug. Things that others often hear themselves.

And it was a nurse that had spoken to my mom sort of after that final third appointment that said, "You know, I think this might be type 1 diabetes." And we ran a few additional tests and it was confirmed. And from there, I was basically sent to the Children's Hospital in Orlando to officially be diagnosed with type 1 diabetes on October 27th, 1999.  A few days before Halloween, and really just entered this world I had no idea about. I'm one of three girls. I'm the oldest of my sisters. And I went from playing like a normal kid, riding bike, we live in Florida, so playing outside, doing a lot of pretend, playing teacher, playing school, I was always the teacher, just carefree kid things. And then told that we're going to the hospital, you have diabetes and everything is about to change essentially, and it did.

Elizabeth Forrest: Immediately was put on insulin shots, finger pricking. I was on an IV while I was in the hospital.  My parents had to be taught how to care for me and how to deliver insulin and how to inject insulin, how to dose and how to calculate and how just about anything in the world will impact my blood sugar, whether it's the Florida heat, hormones during puberty and beyond, stress, whether it be school with testing or life, everything affects it. Exercise, movement, lack thereof, food, and then let alone one type of food. So, everything was going to have a role in my everyday life, not just being a kid and going to school and learning and growing, and so it was a lot to sort of take on early on. but after a few days in the hospital, we went home and essentially started our new life. 

And I will say that as a kid I was really shy. I was very reserved. I often tell everyone that I would always have my younger sister Jen go and if we were at a store if I needed to ask for something I say Jen I don't want to talk to them. So she was always the one I would send to do things. I was very shy. A little after diagnosis, so, I was in the fifth grade and that next year I was entering middle school and this was a really pivotal moment for me just looking back on my life. I was going to a performing arts magnet public school program north of Orlando in Sanford and I had always been interested in the idea of dance. I had taken a dance class at a local studio once before. I liked it, and my sisters and I would always dance around the house or come up with dances and perform them in front of family members, things like that, things kids do. So when the school offered it as a class, I was really interested in that. I was part of the dance program. And through the dance program, we had our own performance at the end of the semester that we worked on all throughout that semester and performed in front of parents and rest of the school.

Elizabeth Forrest: And it gave me this idea of why don't we do that again and raise a few dollars from the parents that come and watch and tell everyone about type 1 diabetes while they're there, and just make it a fun event, and that's really all I thought to do with it is just that. And I was faced with immediate and incredible enthusiastic support by my dance teacher and then my school principal that gave the green light to do this. We used the state-of-the-art theater at the time at a performing arts school to host it. I think we maybe had a hundred people in the audience and my peers and I performed several routines. It was a dance show, so routine after routine. It was a lot of fun.

We had a lot of fun, and as young people it was neat that everyone came together and did something sort of greater than each of us individually and for a cause. And at the show I got to welcome everyone that evening and kind of tell them a little bit about type 1 diabetes and thank them for being there and on the show went. So it was a lot of fun and that really sparked something in me.  So, one, the opportunity to do something like that, but then to see it come to life and it be small but really well received and be fun in the process, it just had me thinking, what else could we do? And each year the show grew. We had more dancers. We had more dance groups that were interested in joining. We had more people in the audience. Our tech crew got stronger. Every year it just got bigger and bigger and bigger.

And at some point it moved from my middle school theater to my then high school theater, which had a larger capacity. Many years later it went to the Bob Carr theater which is a performing arts venue in Orlando. and then, Covid, while it changed the world, it also sort of was a pivotal moment for us. As an organization, because in 2020 I was asked, "will there be dancing for diabetes this year?"  And I said, "Of course there will until there's a cure. We're going to figure out a way to have a show this year." And so we couldn't have an audience, and I had to social distance the dancers, which created a 12-hour production day, but it happened. I was also one month after delivering my first child successfully and health healthy as a type one, but the show must go on, and we were forced - in a good way - to move from the Bob Carr to the premier performing arts facility in town, the Dr. Phillips Center, which if Lincoln Center, if you know anything like that, it looks very close to it.  It's a beautiful facility in Orlando, state-of-the-art, absolutely gorgeous, a performer's dream, whether it's music or dance or theater, any type of performing art. And so, I got to go to the Dr. Phillips and host the show, but I couldn't have anyone in that theater. And the dancers couldn't really interact with one another. And so, it was very odd.

But after I remember being there that day with my team saying, "there's no way we can not perform here again once we're all back together." And so since then we have been performing at the Dr. Phillips Center in the different venues they have. Steinmets Hall is where we call home the last several years. It's an absolutely beautiful hall.  We have 1500 people in the audience that pay a ticket price to be there that night or are part of a group that has sponsored the evening. And then we have 500 volunteer dancers that put on the show that audition, and they're auditioning right now virtually and we make all the selections after Labor Day weekends every fall and let the dancers know which ones have been selected. it's a tough part for me to say no.

One, just the fact that these people that whether they do or don't have a connection to type one want to be involved and want to give their time and their energy and their talent that is just inspiring, so it's tough to say no, but the show it can't be forever long. It has to be two hours or the audience will say, "let us out of here." We want them to want to come back.  So, we have to keep it tight. And the night is truly an evening of entertainment and hope. It is so uplifting, so positive, but we are really making an impact that night. We're raising dollars. Those dollars fuel the programs of Touched by Type 1 for the following year.

Elizabeth Forrest: And that night as well, while we are at capacity in the venue, we provide a live, live stream free, no cost to anyone that has an internet connection that wants to join us that evening. In 2020, we had people tune in from 22 different countries on World Diabetes Day to watch. And that was the first time in my life that I watched the show, because I'm always side stage producing. so I sat in my living room with my newborn baby, husband and dog, and we watched the show, and that was such a memory I'll never forget. I'm glad we're back in the theater with a live audience. But what that show has done is it has allowed Touched by Type 1 to develop all these other programs to fill voids that we've seen in our community.

And so from the show, we created the kids and teens dance program, and we host free dance classes every Saturday in the fall in Central Florida for kids and teens with type 1. They come together and connect with others just like them. They are learning dance, and they're moving and they're having fun, but more importantly they're connecting with others just like them.  And what is so special about that program is that while the kids and teens are in dance class, on the other side of the wall, their caregivers, their loved ones, their siblings, they're waiting. But while they're waiting, they're connecting with other caregivers, other siblings, other people that are part of their support team, so they can ask questions and get tips and tricks from others on how do you handle sleepovers or how do you handle sick days? How do you handle learning to drive with type 1? All the things that unless you're really intentionally thinking about life with an autoimmune disease, you might not have thought how it would impact, but it does.  And so these people that are part of this support system for these kids and teens get that incredible connection with others in similar boats as theirs.

And so that's something that I love observing and watching. but from the dance class we then created our D-BOX program and the D, and I should say every program we provide is there's no cost to participate and with the dance program kids and teens often join us virtually. So again, 2020 taught us that anyone can join dance from anywhere. We would have kids tune in from very behind and ahead time zones, different countries, different languages, and it was really special to see them all interact. we still host the virtual component as well for anyone that wants to join us Saturday in the fall. But the D-BOX program is also a box that is distributed across the country and Puerto Rico, no cost.  Someone newly diagnosed in the last 12 months can go on to our website, fill out a few pieces of information, and then the box arrives on their doorstep just a few weeks later. And that box contains information, resources, samples, materials of anything someone might need to know about within that first 12-month window. The idea behind it was depending on ... oftentimes a diagnosis, there's similar parts to everyone's diagnosis story. They're not all the same, but they're similar parts. but depending on where you're being diagnosed, you might get different information. You might get not enough information. You might get too much information. Really, it just depends on who's delivering the message.

Elizabeth Forrest: This box is supposed to be a streamlined version of all the information one might need when they're ready for it. So, it can sit in dining your living room, your shelf, and just be there when you need it.  But inside there's information. There's brochures. There's pamphlets. There's flyers. But then there's fun things like sunglasses or stress balls, just fun swag. But the information that's inside is about nutrition and exercise and access to insulin, access to supplies, different pump companies, different CGMs, different tools and technology one might need to manage their type 1 diabetes.

Elizabeth Forrest: And so this box, we've distributed just about 15,000 since we launched this program in 2020 across the country. so that's one that really connects us with people beyond Central Florida. The first thing someone sees when they open that box is a card and it says, "You are not alone." And on the back of the card, it welcomes them into our Touched by Type 1 community.  And so, not only do they have all this information from all these different companies and organizations, but at the very first item is to just welcome them and let them know we're here for them should they need us. And not only do they get this box and hopefully it stays with them as long as they need it as a resource, but we stay in contact with them through email periodically. There's a set time frame for it, but they become part of our community and they get information on upcoming events and programs and resources and guides that we create. So, regardless of where they're located, we're still staying connected with them, which is really special.

Becky Miller: I love that so much.

Elizabeth Forrest: And yeah. Yeah. There's I know for sure.

Becky Miller: I was gonna say I love that. I wish they had something like that for every autoimmune disease. That is because I think so many people feel isolated. And just like you said, the very first thing, "you're not alone." Wonderful. What a great resource for people.

Elizabeth Forrest: And we offer a youth version, an adult version, and a box completely in Spanish, because there's just not enough information out there in a perfect world we'd have many more languages and we will create that at some point, but for now we have youth, adult, and Spanish boxes available to anyone newly diagnosed.  We found a lot of people were reaching out because they were diagnosed outside that 12-month window. And so we developed a digital box. And so you can go on to our website and if you're diagnosed outside the window, you automatically receive an email with as long as you entered the information to the form you receive an email with a link to the digital version. So you still get all the access to the information just on not all the physical things.

And then we also have that as well in Spanish, and there should be more languages coming soon on that because that's a little bit easier to put together. But yes, the D-BOX is an incredible resource and a program we're really proud of. And there's other programs, there's other things we're doing, but I don't want to completely take over the conversation.

Alysia Thomas: My gosh, I cannot wipe the smile off my face. Everything you're saying, your story, and everything you've done, it is so inspiring. It is so...you have done something exceptional, and I hope that you know that. I have a couple of friends who have kids that were diagnosed within the last year or so, some more recently, and I'm so excited. I can recommend that they go that they go find you.

Elizabeth Forrest: Yes, please point us.

Alysia Thomas: I actually have some good friends who their little girl is currently at a diabetes camp right now.

Elizabeth Forrest: Wonderful. Diabetes camp is so powerful.

Alysia Thomas: I know, I know,…

Elizabeth Forrest: Yes. Good.

Alysia Thomas: I know. and for her and for them, because it has been the most exhausting, overwhelming, scary year of their lives. And they get to let her go and have fun with people who they know, they trust that she will be taken care of. They don't have to be thinking about her numbers every five minutes getting updates. You know what I mean?

Elizabeth Forrest: Yes. Mhm.

Alysia Thomas: They get to breathe for a little while and…

Elizabeth Forrest: Yeah, absolutely.

Alysia Thomas: She gets to go find her community and find kids that are experiencing the same thing as her. I think that's important for a young person.

So, you were diagnosed at 10 years old, you said. And how do you feel like that shaped your perspective growing up with an autoimmune disease, a chronic illness? how do you feel like that shaped your perspective?

Elizabeth Forrest: I think that it has definitely evolved over time. when I think back to that middle school period, so I was in those dance classes and I want to say for the most part, the dance class was always in the afternoon. So I would, go to my classes, I'd go to lunch and then I would go to the dance room.  And a very vivid memory that still stays with me to this day is every single day I'd walk into the dance room. Everyone in the class would immediately go and sort of change out of their school clothes and change into their dance clothes. So they'd go over this way to change, but I would go down the classroom to the teacher's desk and I would kneel down on the ground behind the desk, pull out my meter, prick my finger, check my blood sugar so I knew the number going in.

Elizabeth Forrest: because there weren't continuous glucose monitors back then. And so I would check it and then I would know kind of my baseline before all the physical activity started and then I would go back down where everyone else is and change in really quick or change out in my clothes really fast because they all got a head start and then get in line with everyone and have class.  But the fact that I had to, go somewhere else and do something different and hide it, and no one told me I had to, but that's naturally what I did is I hid it. And over time, and I was in that class for three years, every year of middle school.

Kids are curious and I see that more and more with my two little ones I have, but kids are really curious and others, my peers would come by, some that would change really fast and, "what is that?" or "what are you doing?" or "why do you have to do that?" And so they would start asking questions and it didn't bother me that they asked the questions. And so from a really early place, I found I had an opportunity to explain it, which I think is what ultimately also allowed me to think, why don't I tell other people about this, too?  because the kids in my class, they just wanted to understand what I was doing and why I was doing something that they weren't. And so on a kid level, it made sense. And so I didn't feel funny about it. I didn't feel bad about Didn't make me feel any certain way. It was just they asked a question and I answered it, and then we went on with dance class.

So I think while I hid it, it also was a really interesting time to be able to connect with someone and give them that education. And who knows, maybe all those girls I had class with for all those years, maybe they know a little bit more about type 1 diabetes now, if they come across it in their day-to-day, I don't know. I would like to think so, and so I got away from the hiding piece of it at some point.

I went on to high school and I do remember now that I'm thinking out loud, I do remember back then in desks you'd had the desk but then there'd be the underpiece of the desk almost like a little cubby where you put things, and so if I wanted to prick my finger, track my blood sugar, I would sort of get my bag pull the stuff out put it in that under part my finger in there and then kind of do what I need to do because of it and at some point I stopped doing it, and at some point I started putting it on top of the desk and started just testing my blood sugar for everyone to see. Depending on the class, I was in a program where I was with basically the same students for the most part. and so as I got more comfortable and got to know my peers more, I would do that. But in a class that maybe was I'd never met anyone, I would be a little bit more reserved about it.

But I think it came with comfort and it came with better understanding it too.  I think that over time, maybe really after adolescence, kind of being more independent, being out of my house, being a very young adult, sort of navigating it, almost starting over because as a kid, your parents are kind of guiding what's going on. And depending on their level of comfort or confidence with it, they may or may not give too much sort of independence for the child to do what they need to do, and so for me, when I went off to college, that's when I almost sort of had a reset with my disease and I got to figure out how I wanted to manage it and how I was going to handle it. Didn't necessarily do it the right way. being, 18, 19, 20-year-old in a new city with really no rules or no constraints on anything. But, college kind of like anyone goes off at some point, that sort of throw it all to the wind and start fresh and figure it out on your own and definitely had more challenges. Nothing scary, nothing like that, but definitely wasn't necessarily managing the disease  But after college, I had a different shift of mindset where I wanted to manage my diabetes very well. I think I recognized that I had more of a platform or more of a place of people were listening to how I was doing it.

And so I sort of felt like I needed to be much more... I was even more responsible with it. to make sure that I was doing what everyone should be doing. And it's not striving towards perfection, but making the right choices and being very intentional with diabetes management. And so I saw a shift there of better managing it. So overall it has evolved over time and I've learned a lot.  I continue to learn a lot and I listen to podcasts, and I read, and I take into account opinions of others I trust when we get new information of how best to manage type 1 diabetes. And it is kind of wild how there's so many different approaches and styles and things you can do that are not necessarily provided in a doctor's appointment. Most of what I have learned has been outside of a doctor's appointment.

And it's just kind of the state of the medical world we live in the United States. It's not really set up for people with type one. Maybe for others. I can't speak to other autoimmune diseases. I also have celiac, but yeah.

Alysia Thomas: It's the same. It's the same for other autoimmune diseases.

Elizabeth Forrest: Yeah. it almost feels DIY. you have to figure it out.

Alysia Thomas: It is 100%. Yes. Yeah.

Elizabeth Forrest: And as long as your numbers and your levels are in a range that your medical team is comfortable with, they're almost just like, "All right, you've got it. Keep doing what you're doing right for better or…

Alysia Thomas: I don't care if you're uncomfortable with anything. If your test results look good, you're good.

Elizabeth Forrest: Yes. For better or worse. And I was explaining this the other day that, I've a very good A1C level for type 1 diabetes and have for many years. It takes a lot of work to get there. But I could have, a great A1C, but I've had a lot of highs and a lot of lows. Or I could have a subpar one and I have a lot of highs, maybe not so many lows. But I also could have the A1C I have now and it be much much more controlled, which is what we want. But each one of those A1C numbers didn't tell the whole story.

And you could almost have the same A1C for very different variations. And on the outside, from a quick look that you get for 15 minutes every 3 months, someone might say, "that's great." But really, it's not that great on the back end, long term.

Alysia Thomas: Isn't it? That's why it's so important to have community like you were talking about.

Elizabeth Forrest: Right. Right.

Alysia Thomas: A lot of the stuff you've learned has not been inside a doctor's office. The majority of the stuff I've learned hasn't been in a doctor's office.

Elizabeth Forrest: Right. Right.

Alysia Thomas: So, I think that's super important. And you were just naturally fell into advocacy when you were kind of young. And I love that. you were in your, youth and you just started naturally.

Becky Miller: Yeah. Yeah. I was going to say that. I was thinking about how you said you were diagnosed just days before Halloween. And I don't know if anybody caught that, but I was like for a kid…

Elizabeth Forrest: Yeah. Yeah.

Alysia Thomas: Devastating.

Becky Miller: ...because that was back when trick-or-treating was still I don't know about you, but it was definitely a bigger thing than it seemed like it is now.

Elizabeth Forrest: For sure.

Becky Miller: And so I was like,…

Elizabeth Forrest: For sure.

Becky Miller: If I had been 10 years old and hadn't been, the candy was out of the picture for Halloween, that would have been devastating. And so...

Elizabeth Forrest: Right. I mea, yeah, I have a visual. I could tell you where I was sitting, what I was doing. Was, released from the hospital. I remember my neighborhood had almost like a Halloween party in the cul-de-sac. So, my sisters and I got dressed up. the family, we went to the cul-de-sac. We, hung out with our neighbors. We did all the things.  And then a day or I think Halloween was a different day, but whatever day Halloween was, my sisters went out, I want to say either with my mom or my dad around the neighborhood and I stayed back with which other whichever parent stayed back, and I was told that I could pick my favorite pieces and hold them and as hold on my pot, if you will, and as in moderation, I could eat them, which isn't the worst thing to have been told in retrospect and at least it wasn't like, "No, you can't have candy." but just the fact that my sisters got to go trick-or-treating and I couldn't. but that they were going to get me candy and then I could hold it and it was just weird and it was definitely not what a 10-year-old wanted to hear. and so it does stand out, which is why I mentioned that it was a few days before Halloween…because part of my story it is part of the story and anyone with type 1 would definitely relate to that for sure. Yeah.

Becky Miller: I was going to say I think also I love that your organization focuses on empowering youth, because I think that is so hard whether, I know, Alysia's got a couple of her daughters have celiac disease and just with diabetes when you have those dietary restrictions that you go to somebody's birthday party or whatever and you can't have what everybody else has. I think that's hard. And I think I would guess for kids sometimes that is especially hard. And so I love that you focus on empowering them that you, yourself started at a young age that you realized, hey, I could do something to raise, money for this. Why do you feel like it's so important?

Well, I think it's pretty obvious I think it's important, I guess, but that kids know that they can do something about it cuz I think sometimes when you're a kid, you feel like the adults are in charge. You can't do anything that's going to make a difference. And I love that you started this organization when you were as young as you were.

Elizabeth Forrest: A lot of things come to my mind. so I, my personal opinion is that you don't know what's possible if you don't know what's possible. If you don't know that you can do well in school and then go to more school to become, I don't know, an accountant, a doctor, a lawyer, in a different direction, go to training and go to more school and become a fireman or a police officer.

Elizabeth Forrest: If you don't know those things exist, you don't know what's possible. And for me, it's so important that kids specifically know that anything they could possibly imagine as being their future is absolutely possible as part of their future. Diabetes isn't who you are. It's part of your story. It's something else you have to think about, something else you have to manage.  But it doesn't have to define you if you don't want it to. And there's so many little things I've done over the years to help really relay that message, but I just believe things happen when they're supposed to and for timing is everything. And I don't know why I sort of got that spark to do something more at that age.

I don't know why I was comfortable speaking to others about it, speaking to adults about it, pitching ideas as a shy kid. I don't know. But I'm so glad those things happen to sort of pave the way and create some really incredible things that we as a team have created over the last 25 years. I will say that I feel incredibly lucky that when I pitched the idea of the dance show that I was immediately responded to with absolutely yes, let's do this. I don't know that that would have been the case, with a different principal, different teacher, different school, different...I don't know if anyone else would have found that same sort of enthusiasm.

Alysia Thomas: Mhm.

Elizabeth Forrest: And so I feel like that was a really lucky moment. I wasn't thinking long term about it and there wasn't this huge plan but I had this idea and they said yes and so what I have done since then is I love creating a space where ideas are really well regarded. I love coming up with ideas. I more so love executing ideas, but I want people to have the conversation in the environment to come up with what do we do this or what if we did that and how about we try this and everything every idea that has come up we have been able to bring to life and to create something really powerful from, and it's not always adults in the room.  I recognized that I got really lucky with that first ask. And in one way that I have felt really strong about is we have a board of directors that is a part of the organization. And many years ago I created a junior board of directors. And so I wanted an opportunity for kids just like me back in 1999 to feel like they had a voice and a place and a community.

And so we created this small group where these kids would convene when the board of directors were meeting in a different room. They would have we would have ours. And at the end of the meeting, the kids would come into the board of directors room and present for just a few minutes of what they discussed, what their action plan was, and what the board, could do for them. And so these kids, I mean, we're talking 8 to 12 years old basically. And to have the opportunity speak in front of a group of professionals, ex, executives in many ways, to have the floor to speak and be heard on what they thought and what they felt could be created and why. I felt like that was something really powerful for them.

And the feedback I get from the kids on the board is they love that. They love the opportunity to come up with ideas and bring them to life. They love the opportunity to connect with the board members as well. And so everything we've ever done at Touch by Type 1 has been focused on the individual with type 1 diabetes, both the kid and the adult.  And I feel like it's such a core value of ours and it shows in so many ways like the junior board or the dance program or the meetups that we have or the annual conference or all the things that we do. But to me, it's so important that we provide the environment that's warm and welcoming and comforting so that way people can come up with ideas or they can feel confident in managing their disease or they feel confident in sharing it with others so they don't have to hide behind the desk or not tell their coworker about it. and so I want this space to continue as it has been of just getting people comfortable with what type 1 diabetes is. And I think that that's really powerful.

Becky Miller: So, Elizabeth, we want to speak to the parents for a second. What would you say to parents whose children have just been diagnosed with type one?

Elizabeth Forrest: I love this question.  I actually have a blog article being released soon that speaks to this, but my initial thoughts to caregivers are you've got this right off the bat, you can do this. And there's no how-to guide. There's no YouTube video. There's no manual for any of us. There's a lot of tips and tricks a lot of us have learned along the way. and part of our community at Touched by Type 1, we share those and we have that available for you. But regardless of that, you can do this. and I would say that give yourself grace, give your kids grace, give your spouse, give every just know that you're all in it together, that you're all learning it, that you're all navigating it. None of you were prepared for this. None of you did anything to cause it. But the best outcome for everyone is that you tackle it as a team and you do it as a family.

Elizabeth Forrest: And whether small or big family, and you're going to have stumbling blocks along the way. You're going to do exactly what the doctor tells you and it's not going to work. And then you're going to do it again and it will, and it won't make any sense of why sometimes it works and sometimes it doesn't. so keep doing it and keep trying.  Every parent, it's for them to decide. But when you feel the timing is right, start to give some independence to your kid or your teen with type 1. Start to let them feel maybe it's asking them, "hey, do you feel like you need to check your blood sugar?" rather than telling them to, or CGMs make the world different now, too. But, letting them have a reminder to pack their diabetes bag, letting them decide if they want to have this food versus this food, even though this food is probably going to affect their blood sugar longer and have a different impact and things like that. But when you're comfortable, let them start making some of their decisions or bringing to you why they want to make a decision a certain way. Let it be a conversation. don't let the numbers be sort of like a report card. I always say that a blood sugar number or even an A1C level, it tells us a moment in time and then it tells us a direction. So, if my blood sugar right now is, 135. Okay, I know right now my blood sugar is 135. I'm good. I don't need to do anything about it. but if my arrows were going up or down, it would give me direction. It would tell me how I need to tackle this in the moment.

And in this case right now, I don't need to do anything. So I always say numbers tell us what we need to do next. But they don't say you are a good parent or a bad parent or a good person with diabetes or a bad person with diabetes. that is not what they tell us. So don't allow yourself to tell yourself that A1C gives us a summary of the last 3 months of blood sugars, but it doesn't tell the whole story because you could have a great A1C and horrible numbers leading up to it.  Horrible meaning up and down up and down a roller coaster. And that roller coaster, isn't great on your body long term, but it's not good, it's not bad. It gives you information on, with this with these numbers, I can decide to make X changes or Y changes and then try them and then see what direction that leads you to. But don't be defined by the numbers of diabetes.

Don't let low blood sugar scare you either. Often times people will run high or allow their kids to run high because they're fearful of a low blood sugar. And both extreme lows and extreme highs are very dangerous for different reasons. But when you're doing the things you need to do, and even when you're not, your blood sugar is going to go where it wants. Just be prepared.  So, if you're going to be a little bit more aggressive in dosing insulin to get a lower blood sugar, just be prepared and have a snack nearby, whether it's a juice box or Gatorade or a pack of Skittles, whatever it might be. And then treat the low a little bit. Not excessive, then you don't want going back to that roller coaster, but treat the low a little bit.

And you'll learn in time. I know if my blood sugar is at a certain number, hovering around 70, 80, if I have four pieces of Skittles, it's going to get me to where I want to be and I'll be fine. So you learn over time of something or how many bites of something. you learn to look at food and beverages in form of medicine, and you learn the quantities that work for you And so don't beat yourself up about getting it perfect. it's not about that. It's the long game. you want to have the right habits in place. You want your kids to be talking about diabetes and not hiding it and sharing it with those that need to know. You want them to be aware that it does, that exercise and food and movement and stress affect their blood sugar so that they don't feel bad when their blood sugar fluctuates because of those things.

Diabetes is very challenging and there's times where none of it makes sense and it's completely frustrating and you're going to feel burnt out.  But that's when the importance of a community comes in and so connect with those that you can whether it's online and gosh I mean when I was diagnosed there was no online community, and so the fact that there's so many versions of an online community that exist today for different chronic conditions is so awesome. it's so cool how people can be connected across barriers and languages and have something that sort of bonds them together.

Elizabeth Forrest: So use that, not in a negative way, but just connect with these people and see who you gravitate towards and stay in contact. Pick someone that you can text or call or email and vice versa. Give that, pay that forward to someone new that you come across too. But I guess there's a lot I could share with caregivers, but those are the things that come up first.

I have one story I'll share with you on that is, it's another vivid memory of my childhood of whether I was going to a doctor's ointment, the endocrinology quarterly appointment specifically. So if it was a first thing in the morning appointment, my mom would you take me from home and we go to the doctor's office or maybe it was in the afternoon. So I'd go to school, she'd pick me up and then we'd go to the appointment. But whenever the appointment was, I could tell you with such confidence that the drive to the doctor's appointment was always an anxious feeling. And then regardless of what the doctor said in the appointment, it never felt like it went well. It never felt like the appointments went well. It always felt like I was being lectured or my mom was being lectured.  and sort of scared in a sense. And then the drive home or back to school was always feeling like I didn't perform well enough, like I got a bad grade, if you will. And I can also see that it wasn't just me that felt that. Kids are perceptive. I could see that my mom felt like she did something wrong. and granted, I'm here today. I've lived a very healthy life. I've done things Has every moment been perfect? Noway near that. but in the moment when you're in it, I think that the feedback that's given in those really short doctor's appointments way back when wasn't always what we needed to hear. And I don't necessarily feel any of those feelings now with my doctor's appointments, but there was a lot of guilt and shame and burden that and a lot of negative feelings and emotions with it.

And I feel like there's such pressure put on the parents and there's such pressure put on the type 1, but there's not necessarily enough resources or at least there wasn't back then. given to say you've got this, it's okay, you can do this. Yes, you don't seem like you're in the right place, but you're doing good job.  Or even just giving tools of okay, I just remember one time being told, "your blood sugar is too high." Okay, tell me what to do with that. Like I am, I don't have a medical background. I'm a teenager. What do I need to do? Tell me, I'll do it, because I was in that phase of diabetes management of I'm a teacher's pet tell me what I need to do, and I will do it. But if all you're going to do is say plug in these numbers and that's it, and then when the numbers on the output don't match what you told me and how is that my fault? You didn't tell me anything else. You didn't give me any other context or any other resources to figure this out better. So, I say all that with a lot of hindsight, but in the moment it felt tough and it felt like I was always being graded and my mom was always being graded and that we weren't necessarily getting good grades, but we were trying, and we were doing what we could and what we knew, but we weren't really supported in the right way.

Alysia Thomas: That just sounds exhausting.

Becky Miller: Do you know I was going to say I love though that you're saying that to caregivers, because obviously we think of parents more often, but I know even as an adult when we were growing up, because my dad would cook sometimes, but my mom did a lot of the cooking and it was the same way. if his blood sugars weren't right, she would feel guilty about it…

Elizabeth Forrest: Exactly. Mhm.

Becky Miller: ...because she would think she had not cooked things properly. and so I think that idea of, you know...

Alysia Thomas: Perfection.

Becky Miller: ...telling caregivers to give themselves some grace and the people that are going through it to give themselves some grace, because even if you do all the right things, it doesn't mean it's going to be perfect. I think that's so valuable.

Elizabeth Forrest: Yeah. Absolutely.

Alysia Thomas: I love that you touched on the importance of community, because it is so huge and we are living in a day and age where it is accessible to anyone now. And so if you are a caregiver or if you are somebody living with type 1 diabetes or affected in any way, it is really so easy to get some information, and to find a community.

And speaking of things that are happening in the diabetes world. I know just in our lifetime amazing strides have come, like research and technology, and so is there anything going on that you're excited about right now - up and coming trends or anything that you can think of that is something to look forward to?

Elizabeth Forrest: You know, I think when most people are diagnosed with type 1 diabetes, they're often told, " a cure is 5, 10 years away. Hang on."  And I mean, I still hear this from others sharing with me that their doctor told them that. I'm like, that's what they told my parents in 1999. Why is that even a conversation? But, on the flip side, I've met so many amazing people over almost three decades, 25 years of, living every day with this disease or caring for someone every day with this disease.

And recently I was chatting with a mom who's both of her daughters have type 1 diabetes. They were diagnosed two weeks apart at a very young age in the middle of COVID. Like, worst case scenario horrible, you awful. They have such a wonderful mindset and strategy and they approach everything as a solid family unit, and it's so wonderful to see.  But she shared that someone had mentioned something about a cure. And one of the girls, it didn't even cross her mind, like what does that even mean? What is a cure? These kids are growing up now with just so many more tools and resources than I could have ever imagined at that age. And so they're learning really early on to really just live well with type 1, to thrive with it, to not let it hold them back, that they're not even thinking of, what if there was a day I don't have to do this.? That's not the case for everyone, but I've seen that with a lot of families and hearing it specifically from this one recently was a really interesting perspective.  But I mean I think back to o, again over the last 26 years because I was diagnosed a year before the organization. officially was created and I mean CGMs weren't around like I said, it was pricking my finger all throughout the day 8, 10 times a day. So that technology has just been incredible.

I remember when CGMs were coming out on the market, I was not interested. I had an insulin pump and I was like, "Nope, one medical device is good for me. I don't need anything else to manage. Yeah, I'm breaking my finger. Yeah, all my fingers are hard and callous, but you know what? It's working. It's okay." And then in the dance classes with the kids and teens with diabetes, they all were showing up with their insulin pumps and their CGMs and they're, having a great time in class and I'm seeing them and I'm seeing them change it.  and I'm seeing them do all the things that I'm doing, but every week I would see them and I'm like, gosh, if they can put the second device on, so can I. And I remember getting finally going to my doctor saying, okay, I want to do this. I get the box. It sits on my kitchen counter for a month. I'm just looking at it every day. And then I had that realization. these kids can do this. So can I. And so they were the ones that inspired me to get the additional device and not only get it, but put it on and use it. And I can't imagine managing diabetes without it.

I now say that it is the most powerful form of technology we have. And I could live without a pump, but I couldn't live without a CGM because of the data and insight it gives me in the times where, if I'm fighting insurance on getting my next order of a Dexcom or maybe it fell out in the pool and I don't have a backup, those times where I'm without for a short period of time, I really feel it and I'm like, "Get me up big.  I need this now. I'm tired of pricking my fingers." So, it's funny how it shifts.

In terms of excitement of what's ahead, we have been really nicely connected to the Diabetes Research Institute for many, many years now. They're based in Miami, Florida, so just a short drive away from us in Orlando. And I personally have been to their facility many times now. I've walked the halls. I've been in the labs. I've spoken with different researchers and scientists focused on different elements of the cure they're working on and specifically I mean the entire focus of the DRI is a biological cure for type 1 diabetes and specifically one that doesn't require additional treatments or additional medications that could potentially harm other parts of the body. So just a really perfect approach if one exists for someone with type 1. 

Elizabeth Forrest: And so I've seen the progress they've made and I see that they work so closely with those in their facility but those around the world that are in the type 1 diabetes research space and in other diseases too because one can learn a lot from how other diseases work in other and other patients, and how they form, how they grow, how they're impacted by different treatments. And so they collaborate and they learn from one another. And so to see the progress they've made is really important. And it definitely always kind of gives me a boost of inspiration when I go visit them down there. They often send their researchers up to our free annual conference in September every year in Orlando to sort of give an update on the work they're doing, which is always wonderful. And yeah, there's a lot of groups out there that are hopeful and are working every single day to find a cure for type 1 diabetes. And so I'm optimistic, but I've also been around seeing this, loving this every day for 26 years. And I'm again hopeful. I'm optimistic. but we're not there yet. And so Touch by Type One will be here for those that need it until that day comes. And when that day comes, we'll celebrate and we'll move on to a new hurdle and a new challenge to help others with. and that will be the greatest day any of us could have ever imagined. But, yeah, there's a lot of excitement in the space, that's for sure.

Stacy Griffin: That's fantastic. For anyone out there who's listening who's wondering if they could turn their own health challenge into something meaningful, what advice would you give them? because you really are very resilient and you've got leadership in this particular idea. what would you suggest to people? what can you do to get out of your shell and out into the open to help others?

Elizabeth Forrest: I would say to immediately learn your disease. Do your research. whether it's going to the library or going online. You have to be careful online, but Go to the right sources that make sense for that disease.  and look at many sources and look at many journals and many articles and many physicians and read as much as you can to absorb as much as you can. I always say that you can't advocate for your best interest if you don't know what you're talking about. How can you be in the hospital delivering a baby and telling the nurse that you need X, Y, and Z for your diabetes if you don't even know what you're asking for? So, you need to become the expert of your disease for yourself.

One because then you can be your best advocate in whatever scenario you're in, whether it's in a medical setting, in a boardroom, wherever. Without that education, you won't have the confidence to kind of push the envelope and go a little further and think, okay, now that I understand it, what can I do with it? Educate yourself as much as you can and become the right expert, because you don't want to just be the loudest in the room when you have to fight the insurance company for your supplies or your medicine or whatever it might be, or asking for accommodations. you need to know what it is you need and you need to know what it is you're dealing with before you can do those things at least to speak intelligently, confidently and get the result you want. So, education is number one.

Elizabeth Forrest: I would say join a community number two because you don't want to join too fast where you don't know what everyone's talking about. You don't know if this community knows what they're talking about. do your research. join a community and whatever that means for you, whether it's a pen pal, a peer, you can email with a Facebook group, follow an organization online and see what they're putting out. and then I would say look and see what are other people doing in that space and what are your talents? What drives you? Where are you passionate about? Is it volunteering? I mean anyone can make a difference in whichever disease we're talking about and everyone brings different skill sets to the table.

And so figure out for yourself what would kind of fill your cup and see where you can apply it and take a chance and email someone at an organization. Ask how you can help ask how you can be involved and then you even grow your community from there and getting to interact with others in person and things like that. But I think that there's some little things you can do first and then sky's the limit there of what you want to do. I mean, if you can dream it, you can do it.

Stacy Griffin: I love that you said that. Thank you so much for sharing that. We're huge on advocacy, the importance of advocating for yourself and that you can't do that if you don't educate yourself. So, thank you for backing us up on that very important tenant in our...

Elizabeth Forrest: Of course, I will say it every day of my life.

Becky Miller: And finally, Elizabeth, as we're getting ready to wrap up, where can our listeners connect with you or support the amazing work that you're doing with Touched by Type 1?

Elizabeth Forrest: Yes, you can go to touchedbytype1.org to read about any of the programs, our history, more about me, the resources we provide to all the different groups we work with. You can see what we've done over the years. you can also register as a volunteer. you can stay connected and learn more about what is coming up and ahead. And you can check us out on YouTube, TikTok, all the platforms. Just search for Touched by Type 1 and you'll find us. And stay connected with us and let us know if you want to get involved. We love volunteers. We love people that participate. We love people that can give a dollar or two. So, yeah, connect with us.

Alysia Thomas: I love that. I think it's amazing that you have so many wonderful resources to share with people and that you are putting it out there. We are so honored to have you on our podcast today. Thank you for sharing your story and your purpose and your heart with us. we have been touched by type 1 diabetes in multiple ways throughout our lives and I really appreciate what you had to share and we are honored to shine a light on your journey.

So to all of you autoimmune adventurers out there, remember that you are worthy of joy. Your disease does not define your life, you do.