Two For One

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Craig: From Beta Cell and JDRF, this is Lunchbreak, the midday live streaming show about people living with Type 1 diabetes. I'm your host Craig Stubing. We have people watching on Beta Cell's Facebook page and JDRF's Twitch channel. We'll be taking questions from our viewers at the end of the show, so send them our way in the chat and we'll get to them at the end. I'm here today with Keary Cheney from San Diego, California. How is San Diego doing?

Keary: It is beautiful today. It's empty but beautiful.

Craig: I'm sad that we're forcing you to be stuck inside, but I guess that's the rules anyway to be stuck inside.

Keary: I know. It is, yes.

Craig: You were diagnosed at 26 years old. Maybe not most uncommon thing. Many people are diagnosed 26 years old, but you weren't in the US at the time that that's happened. You were diagnosed in the US, but symptoms, where were you?

Keary: Do you want the story?

Craig: Yes, give me the elevator pitch.

Keary: We were in the middle of our son's adoption in Uganda and we thought we'd be there for about three months to complete the process in order to get his visa and then bring him back home. During that time, I just felt at first like really tired and I just thought, well, that's normal. We're not getting good sleep. He's not sleeping at night. We're eating different food, we're in a different country. There's just so much that wasn't a part of our regular day-routine, and so I chalked it up to being a new mom and the symptoms started to turn into fatigue.

I couldn't get off the couch and then I was drinking a ton of water, but it's really hot in Uganda, so we just thought, well, it's really hot out, so, of course, we're thirsty and if you're drinking a lot of water, of course, you pee all the time. I didn't really think anything of it. My whole life I have been really healthy. I never really had any kind of health issues. To me, I just was like, "I'm really tired and don't feel good." My symptoms just got worse and worse and that's when I was told that I had parasites, which is very common in Uganda. I got to the point where I couldn't even hold a conversation anymore.

Even just to talk with somebody felt so exhausting and I couldn't get off the couch, I couldn't pick my son up anymore. I would fall out of bed in the middle of the night just trying to get him out of his crib. If he was crying, I was so weak and I was like, "I have to go home, I can't stay here feeling like this." I flew back to the States and I thought if I could just see my doctor and get some American medicine, maybe it'll be a little different, and I'll feel better, and I'll be back in like two weeks' time. I came here, saw my doctor, kept treating parasites, kept getting worse, and then that's when I ended up in a coma and was diagnosed with Type 1, not parasites.

Craig: About how long do you think you were starting from the moment you started exhibiting symptoms?

Keary: It's a good question. Now that I know what the symptoms are, I honestly can see the symptoms for years leading up to it. I struggled to put on weight. People would make fun of me and just say, "Keary, eat more food," and I ate a ton and I was always built thinner. I'm tall, but a smaller frame and people are like, "Eat a hamburger, eat something." I just could never seem to put on weight. I was thirsty all the time, but I just thought that was normal as being a human. You drink water.

I remember there was one day before we had gone to Uganda and I was sitting in a parking lot in my car about to get out, and I remember watching people walk by walking into the store and I thought, "How are they walking into the store without a water bottle? Do they just not get thirsty," but it never occurred to me that thirst was a symptom of something serious. I see it for a long time leading up to it, but really I would say the two, three months before is when the symptoms were pretty severe.

Craig: I remember the thirst as well. I think that's the most vivid symptom to me. Fatigue, I don't really remember because I was sleeping, but it got to the point before I was diagnosed that my mouth would get so dry. It was like I couldn't even talk without drinking water. It was like completely parched like I'd been in the desert for months without water. I needed a sip of something just to tell someone that I needed water. I guess if you don't know the symptoms, like you said, it doesn't seem like anything. These little things don't add up to diabetes unless you know that it's diabetes. It's just life.

Keary: Totally. In Uganda, there was no washing machine, there was no dryer, so you hand wash all your clothes, and then you hang them out to dry. I always felt my clothes needed to go in the dryer to shrink back up after being washed. My clothes started fitting more loosely, and I just thought it's because we're not drying our clothes. They're getting really stretched because you're scrubbing them so hard to get them clean, but we didn't have a mirror in our house, so I never even really saw myself other than this one little square mirror for your face. We didn't have any long, tall mirrors, so I never saw that my body was withering away.

Now that I look back, I see all these little things that made up one big diagnosis, and they all make sense now, but at the time, it was really easy to put it onto something else like, "We were tired."

Craig: When you got that diagnosis, what did that feel like?

Keary: I felt like I was hit by a truck or a train or maybe both. It was so hard. We were in the middle of adopting our son who was really sick. Blood transfusions were the only thing keeping him alive, and then to hear this diagnosis while I was here, my husband was in Uganda trying to get my son a blood transfusion before he could even get on a plane to come back here. I didn't know what diabetes was. I had heard the word diabetes, but I didn't know the difference between Type 1 and Type 2, and so I just was like, "No, I don't have that. I was in Uganda, I have parasites. We're going to get rid of them, I'm going to be back to normal."

They just come in and they're like, "You're going to have to take shots for the rest of your life, and here's all the things that you can't do anymore." It was so overwhelming, especially for me, I just felt like I was always really passionate about exercising and eating healthy, so it was just this shock to hear the word diabetes and also that it wasn't ever going to go away. It was hard. I didn't know anybody with Type 1, so I felt lonely. I didn't know who to go to. It wasn't like, "My friend around the corner, they've got Type 1, I can go ask them some questions."

It was like Google became my friend but also my enemy. It was heavy being 26 and going 26 years knowing what it's like to live without it, and then all of a sudden, your whole life changes in an instant. It was pretty hard.

Craig: Then you have a blog?

Keary: Yes.

Craig: At what point did you decide to tell people that you had gotten Type 1? Was that a hard decision to come to?

Keary: I knew that I would, I just knew that I needed some time to even process what all of this meant to what was happening with our family, how was I even going to get back to Uganda? I knew that so many questions were going to come along with like, well, what's next? Just trying to figure out what it looked like to live with diabetes and so much of life had changed. It took me probably about two weeks to really share that news with I guess the world because people have really been along this journey with us as we were adopting our son, and anxiously waiting for us to return home with him. All of a sudden I get diabetes and it's like, well, what happens now?

It took me about two weeks to feel like I could talk about it. There's so much misunderstanding between Type 1 and Type 2 and I just was so nervous about what people were going to say like, "Did you eat unhealthy? It was your fault," and I didn't want that. Once I felt like I was ready to talk about it, it was people came out of the woodwork and they're like, "I have Type 1" or "My son has Type 1." Total strangers just pulled me in and gave me this big virtual hug, it felt like.

Honestly, that was the best thing is what carried us through that time in Uganda was just finding community through social media was really the only way we could do that in Uganda because it's not like there were people there that had Type 1 that we could really connect with. Just finding people that were on the same journey as myself was really healing for me.

Craig: Did you leave the hospital feeling like you can manage this yourself?

Keary: Yes and no. I'm the go-getter. Like in school, I always wanted to do 110%. I want to do things really well, and so I was like, "I'm going to do this and I'm going to be awesome at it," but it also felt overwhelming because I didn't know all that went into it. I remember one of the most frustrating feelings was I was still in the hospital, and they came in, and they were rambling off these numbers to me of like bloodwork and stuff. To me, it meant nothing, because I didn't understand the context. I didn't know what those numbers were supposed to be and they're like, "So your A1C is 14.1, but it needs to be under seven."

I don't think I had ever felt so frustrated with my own body. Normally, if somebody tells me to do something, I'm going to do it and I'm going to do it really well and it's going to be perfect. Until I hear her say that my numbers were not where they were supposed to be, but there was nothing in that moment that I could have done to just change it was so frustrating. Over time, I started to understand how it all works, but I was so scared leaving the hospital. They had done everything for me for almost a week and all of the sudden, they're like, "Here's a couple of worksheets and good luck," and they wheel you out, and put you in your car. I was like, "What if I mess up?"

I have so many questions like, "What am I supposed to do?" I just remember I kept googling things like, "What do I do when, what does this mean, what is this number?" Trying to understand how to count carbs. It took a while to get into a rhythm and it felt really overwhelming, I guess maybe because I had no exposure to Type 1 up until that point, but now that I'm down the road, I can say, it really does get easier. You figure it out, it doesn't go away. There's still really hard days, but I feel like we've gotten into a rhythm to make life feel as normal as possible.

Craig: I think that's the hard part about type-1. You can learn the rules and you become a little more intuitive and maybe instinctive of what you have to do, but it's still just as much work years later than it is day one. You still have to test your blood sugar or check your Dexcom just as much, take as much insulin, count the carbs the same way. You're maybe a little quicker at it and maybe you're used to doing it so you don't realize it's so much work, but it's the same amount of work.

Keary: It's still there. It hasn't gone away. Nobody's doing it for me.

Craig: I think people who don't have type-1 don't really understand how much work we're actually doing behind the scenes. They see when you pull out the needle and give it the shot and they think that's all the work. Like it's every time you eat, you just give a shot and you're done. There's a lot leading up to that shot, and then after that shot, you'll keep thinking, "Was that right? Should I have done it a little more? Should I have done a little less? Which way is the Dexcom going?" You're getting used to this new, overwhelming, life-changing disease, and then you get a call or a text from a friend in Africa?

Keary: Yes, so this was two months after I was diagnosed. My husband had came back to the States, helped me get back on my feet, and just figure out how to do this to where I could be by myself again. Then he went back to Uganda to be with our son and I was just here. My A1C was so high, my body was in such bad shape that I couldn't drive for weeks. My vision was so bad. It's come back to normal now thankfully, but for weeks, it was exhausting just to walk around the house. It took me time to feel like I could function again. Two months after I was diagnosed, we were told about a little girl who had just been diagnosed in Uganda with type-1.

The fact that she was even diagnosed was a total miracle because it often gets misdiagnosed just like malaria, which is very common because the symptoms can look the same. Basically, you start losing weight and you're really sick, but if you treat malaria when you actually have type-1, that doesn't end well. It blows my mind that she was even diagnosed. There's just not a lot of resources there, there's not a lot of education, there's not a lot of awareness, and so she needed a foster family immediately.

Dustin took her in, my husband, and was taking care of two kids while I was trying to get supplies together, and repack my bags, and make sure that I would be set to travel back to Uganda to be there for an unknown amount of time.

Craig: What is the state of diabetes care in Uganda?

Keary: It's almost non-existent. I think there's four endocrinologists in the whole country. We would have to hire a driver because you don't have a car there, and so to get around town, you would just take a boda, which is like you hop on the back of a motorcycle and somebody drives you around, but to go to the capital, you would have to hire a driver and drive anywhere from three to five hours depending on how the roads and traffic was to get to a bigger hospital, even though that was nothing like what hospitals are here. Most people understand diabetes in Uganda as type-2 and they call it sugar diabetes because you ate a lot of sugar to get it. It's how they reference it.

Trying to explain to doctors or to people like, "So this is type-1," they're like, "You'll give her too much sugar?" I was like, "No, that's not how it worked."

Craig: So even the medical professionals didn't really understand it.

Keary: Yes, and so the treatment for type-1 and type-2 is so different, obviously. What happens in Uganda, most of the time, is if somebody is diagnosed with diabetes, they just automatically put them on something like a metformin and that's it. That only lasts for so long because you have to be taking insulin. It's a total miracle that she got the right diagnosis and just the way we were brought together is so wild, but it's so weird. It's hard to talk about it. It's hard to put words to it. It's so beautiful that we were brought together even though it took two really painful experiences to make that happen.

Craig: What is it like for you? Two months with diabetes isn't very much. You're trying to learn how to live with this disease, transition from 26 years without type-1 to now having type-1. Now you've got a daughter who was just diagnosed who knows nothing about type-1 either. How do you begin to manage that? How do you manage someone else and yourself when you don't even really understand it that well?

Keary: I don't know. Honestly, it's a miracle that we've made it this far. I remember I bought a couple of books online before I was heading back to Uganda and I brought those. I had started to find Facebook groups where I could ask questions because I'm like, "I don't feel like Google is always giving me answers. Maybe people who actually live with this can help." I just did so much reading, so much research so that I could understand what diabetes was. I felt like if I could understand what diabetes was, then it would make me feel a little bit more empowered because I didn't feel like I was going to get those resources in Uganda, and being 9,000 miles away was really hard.

I couldn't just call up my doctor from Uganda. I couldn't go to some type-1 meetup, and so I really relied on just the online diabetes community and books. It was really cool that we got to do everything together. We were only diagnosed two months apart, so we were kind of running out the gate together. It was a lot of trial and error, a lot of failures, a lot of mistakes until you start to understand what this really looks like. Zola didn't speak any English at all, so that made it a lot harder in trying to convey to her why I'm pricking her finger or why I'm giving her shots all day, and why you can't eat that or now you have to eat even if you might not be hungry.

It was a lot to take on. Now looking back, I'm like, "That really was a lot thrown on our plate at one time," but I'm so glad where we are now and just feeling more confident in managing diabetes. Obviously, she wouldn't be a part of our family if I wasn't diagnosed, but I love that I get to model for her what this looks like. I know that she watches me, she watches how I talk about diabetes, she watches how I live with it. To the best of my ability, I try to really paint that in a positive light for her. Not negating how hard it is, but also it doesn't have to slow you down. It doesn't have to stop you from running after big dreams.

It doesn't have to stop you from travel or family or anything like that. It's been a cool journey to do together. Cool also meaning that it's been really hard.

Craig: It's pretty unique in the sense that I don't know many other families where the mom and daughter or a parent and a child are both diagnosed virtually at the same time and are figuring it out together. Usually, if they're both diagnosed, there's a gap. A year, a couple of years.

Keary: I remember searching YouTube videos in Uganda on how to do things, on what words were. There's diabetes slang and I'm like, "What are these words people are talking about?" I don't know. It's been a journey, but I'm so proud of her. She has come so far. Now that you talk to her, you'd never know that she didn't speak English and she just has taken diabetes by the horns and she just does it. People watch her and they're like, "What is she doing?" All by herself, she was giving herself shots six months in totally by her choice. She wanted to do it. I'm just so proud of how far she's come.

Craig: So it's been about five years, right?

Keary: Yes.

Craig: How much of her management can she do herself?

Keary: That is one of those things that you just learn as you go. I want it to be very much like I want her to take as much as she wants to do, but I'm happy to do any of it, all of it, none of it. I don't want her to feel the burden of diabetes. I want her to feel like she can just be a kid, but if she wants to do that, then I want to let her. Zola, we got her when she was six. We got back to the States when she was seven, and so that was when she really started to start learning English because when we were in Uganda, everybody there just spoke to her in her language. Aside from us, we were the only ones really speaking English to her.

Once we got back to the States, she was seven and just learning English. So she is a little behind in school, she's catching up. As far as math calculations, I don't let her do those on her own. She just started using the tandem T slim pump like two months ago I think. January she started. I let her push all the buttons, I let her do all of that, I just tell her what to enter on there as far as how many carbs she's eating. Just this last week, I now let her correct her blood sugar on her own. If she hears it beep and she knows that she's high, the pump is going to say if you need a correction or not, so that's nice, so she can't necessarily give herself a correction if she doesn't need it.

If she's playing outside, I'm like, "If you hear it beeping and you're high, type in your number, and if it tells you that you need a correction, you can go ahead and dose it." We've been doing these little steps here and there to give her more independence so that she can go out and I'm not constantly like, "Hey, let me check your blood sugar." Also, I want to take as much off her plate as I can that she doesn't want to have to do so that she isn't necessarily thinking about it all the time. .

Craig: In terms of that, how are her feelings towards type-1? Does she feel weird or is it maybe easier for her to have it because you have it too, she knows someone?

Keary: She's never really had diabetes without me, and so it's not like you can compare, but I will say I think from my perspective watching as her mom, I think it makes it so much easier for her knowing that she doesn't have to put on a Dexcom by herself. She doesn't have to get poked in the middle of the night. All the things that you hate about diabetes, she knows that I know those things too and I've done them first. I've showed her how it works before she's ever had to do it. No kid wants to have diabetes, but she runs. She's going to do life and diabetes is also there in her pocket that we have to manage.

She plays with friends, she plays sports, she does things that any other kid would do. Obviously, with a little bit more work, but she is just joyful, she's playful, she has the most infectious loud laugh. Every once in awhile she'll be like, "I don't like diabetes." Maybe if we had a bad site or if her blood sugar is high or something, but it's very rare that she talks about not liking it. I've tried really hard to, not so much talk about diabetes in a positive way like it's this great thing, but just really trying to focus on the things in our life that we have because of diabetes. The more that I can do that, I think the more that she sees it and then she'll do that. I won't say that I do it perfect all the time.

Craig: Has it been hard transitioning now being stuck at home? All this disruption in your life, how has that changed your lives and how have you had to change how you

manage type-1 to fit that?

Keary: I actually homeschool both of our kids. As far as school purposes, we've done school at home already. We don't necessarily do school at home in the normal day, we do a lot of school out and about. We have activities, we have other groups we get together with, but as far as me teaching the kids, that hasn't changed. My kids are so social, they both play soccer. Zola's two best friends, one is type-1, the other one has a brother with type-1, and we spend most of our time with it, and they're both homeschooling families. All of our routine has definitely got thrown out the window. I will say I'm really proud of them for how they're handling it, for not being able to go out.

We have FaceTime play dates and we are trying to make it work. They're definitely bummed and you can tell that there's meltdowns more so from the little one, who just really misses his structure, and his routine, and friends. We definitely snack a lot more than we used to.

[laughter]

Craig: I think we're all snacking a little more than we used to.

Keary: I remember you get the clarity report for your Dexcom every Sunday night or whatever, and I remember, I think my time and range went down like 10%, and I'm like, "What?"

I think because we're all just sitting around eating and not exercising and doing anything. We try and go out for like a bike ride every day or a walk. We have a yard, thankfully, so the kids can jump on the trampoline, but our days definitely look way different than they normally do.

Craig: You've mentioned the online community a bit, how it's helped you transition to having type-1 to raising a kid with type-1 while you have type-1. Has that been helpful during this lockdown? Have you been reaching out to the type-1 community?

Keary: Yes, absolutely. When I was first diagnosed and very shortly after that went back to Uganda, that was how I started to meet people with diabetes, and I realized how important that was in our family's life, and how much we personally needed that. I feel like we've carried that very close to our hearts for the last five years and now that everybody's stuck at home. I knew that the online community was really important to me, and now that we can't be with those friends that we normally see almost on an everyday basis, it's just been such a reminder of how important those friendships are.

I feel like diabetes feels easier when you're doing it with a friend or with somebody else because you don't have to explain yourself, they understand what you're going through. You don't have to explain a bad day, they'd know what a bad day feels like. So now just trying to do that online through FaceTime, and videos, and different fun games, and activities, Zoom meetups and stuff. It's been so important for us just to feel like we're staying connected as best as we can. I really don't think there's much more we can do without being able to be with people in person. Diabetes feels lonely if you don't have somebody else that understands that part of your life. I think my biggest thing for people who are newly diagnosed is when you're ready, jump in or even find one person that can be your person. Over the last five years, I've met a lot of people with type-1, and the majority of my closest friends now all have type-1 or are a type-1 parent. It's doesn't make up who we are, diabetes doesn't define who I am, but having those friendships for myself has been really important for my own mental health, but also I see that for my daughter.

Just yesterday, she was FaceTiming her best friend who her brother has type-1, and they haven't gotten to see each other for the last over a month now and her best friend put on a pump site to support her to say, "I know what it feels like for you." It keeps our heads up, it keeps us smiling. We're definitely ready to see people in person, but I'm really thankful that the diabetes community, the online community is there and it exists so that when things like this happen, we have something to fall back on to, and there's still a lot of support.

Craig: Absolutely. We're almost out of time, but we have a question, if you know of any groups in Uganda that are raising type-1 awareness or helping out type-1s in any way.

Keary: Yes, so there is the

Sonia Nabeta Foundation and I can send you the link to their website if you need help with spelling. I did not come across them until actually after we came home from Uganda because I think it was just starting up. Their main thing is trying to provide resources in different areas to people with type-1. They'll host camps, diabetes camps and the whole goal is to bring people from the area and then educate them on how to manage diabetes. I guess as best as you can connect them with other people even though community there looks very different than it does in America. They're the first ones that come to mind, and I love what they're doing, which is really amazing.

Craig: That is amazing. Luckily, we have all this technology that no matter where you are in the world now, there's some way to get in touch with someone.

Keary: Yes, here for sure, Uganda was a little different.

Craig: That's all the time we have for today. Lunchbreak is a production of Beta Cell and it's produced by me, Craig Stubing. Thanks to everyone watching on Facebook and Twitch. We'll be doing episodes every day this week at noon, which is only one more day, it's just tomorrow, so tune in, watch live or you can hear that next day on the podcast. Our website is betacellpodcast.com, there you can find every episode of all of the Beta Cell shows if you want to listen to something else besides the news while you're stuck at home. JDRF is the leading global organization funding type-1 diabetes research. They need your help to do the important work of improving the lives of people with type-1.

You can get involved with your local chapter or donate at jdrf.org, and if you're watching on Twitch, there's a donate button there too. Lastly, Keary, you post lots of recipes on your blog and Instagram. We're all stuck at home, we have limited food. What's something tasty we can make? What do you recommend is going to be easy and make us feel good?

Keary: Okay, so if people already follow us on Instagram, they know we talk about this a lot, but chicken tortilla soup, this has been our favorite. We do it in the instant pot so it takes six minutes to cook. Most of the ingredients are pantry shelf friendly so they can stay on the shelf. The only thing is we pull frozen chicken out once we need it. It's super-fast, it's super-filling, it's easy on blood sugar. Everybody in the house loves it. You can throw whatever on top you want. That's our go-to right now because it makes lots of leftovers, keeps us full for the week. I would say that would be our number one thing, and then a lot of snacks here and a lot of popcorn has been eaten.

Craig: I Love popcorn. Great, well, thank you so much, Keary. Thank you, everyone, for watching. We will see you tomorrow. Go wash your hands.