Show Notes
Questions for Reflection
Each episode we offer you a few prompts to think about how that day's conversation applies to you. You might pause the podcast and answer them right then and there, but if you keep a journal (Steph and Beth both do), you might find one of these PDFs useful. Choose the orientation that fits best in your journal.
Transcript
Beth Demme (00:03):
Welcome to the Discovering Our Scars Podcast. Stephanie Kostopoulos (00:06): Where we have honest conversations about things that make us different. I'm Steph. Beth Demme (00:09): And I'm Beth. Stephanie Kostopoulos (00:10): I've been in recovery for 14 years and am the author of Discovering My Scars, my memoir about my mental health struggles, experiences, and faith. Beth Demme (00:17): I'm a lawyer turned pastor who's all about self-awareness and emotional health because I know what it's like to have neither of those things. Stephanie Kostopoulos (00:23): Beth and I have been friends for years. Have gone through a recovery program together. And when I wanted to start a podcast, she was the only name that came to mind as co-host. Beth Demme (00:30): I didn't hesitate to say yes because I've learned a lot from honest conversations with Steph over the years. Stephanie Kostopoulos (00:35): We value honest conversations and we hope you do too. Beth Demme (00:38): That's why we do this and why we want you to be part of what we're discussing today. On today's show, we're going to have an honest conversation titled The Scars of a Lifelong Illness with our special guest, Daniel. Hi, Daniel. Welcome. Daniel Kuykendall (00:51): Hi, how are you guys doing today? Beth Demme (00:53): Good, thanks. Stephanie Kostopoulos (00:54): Doing good. Then we will invite you to reflect on the conversation in your own life with questions for reflection. Beth Demme (00:58): The show will close with Slice of Life. And if you wonder what that is, stay tuned until the end. We have Daniel on as our guest today. Stephanie Kostopoulos (01:05): Yes. Beth Demme (01:06): You have wanted Daniel to be a guest since pretty much the first conversation we ever had about having a podcast, which would have been years ago, a couple of years ago at this point. Why? Why did you want Daniel to be first? Stephanie Kostopoulos (01:20): Because he's the best. So have the best for first. Daniel Kuykendall (01:24): It's now on record. Beth Demme (01:24): Yeah, it's true. Stephanie Kostopoulos (01:25): It's on record. I should stop recording. Yeah. I can't believe I said that. Daniel and I, actually, we go way back. We've been friends for 10 years I think so now. Daniel Kuykendall (01:34): Yeah. I think about 10 years. Stephanie Kostopoulos (01:35): Yeah. About 10 years. Daniel Kuykendall (01:36): 2010 is when I started working at Apple. Stephanie Kostopoulos (01:37): Yeah. And we're in great 2020, so- Beth Demme (01:38): That's true. Daniel Kuykendall (01:38): It's been a great 10 years, huh? Stephanie Kostopoulos (01:41): Yeah. Great, great celebration. You were actually on my team at Apple. You came a couple of years after me and you were on the creative team and I was lead creative. Daniel Kuykendall (01:51): Yeah. My whole goal of joining Apple was to become a part of the creative team. So I guess you could say I joined Apple so Stephanie could be my boss. Stephanie Kostopoulos (02:00): To be on my team. I think that's the reason. That is amazing. Beth Demme (02:03): That makes perfect sense. For a time, it looked like he wasn't going to get to be our first male guest because we actually had another person lined up. But then what happened? Stephanie Kostopoulos (02:12): Yeah. We've been good friends ever since Apple and we have really deep conversations, just like me and you, Beth, which is why we started a podcast. And so, I always wanted to have him on the podcast, but I never knew what for exactly, because there's so many things we can talk to him about. I always wanted him to be the first male guest, but then we actually scheduled another male guest before him, and that male guest got Coronavirus. Beth Demme (02:34): Yikes. Stephanie Kostopoulos (02:34): So I don't know if there's any connection. I don't know if Daniel made that happen. Daniel Kuykendall (02:39): I gave it to him. Stephanie Kostopoulos (02:39): I don't know. But anyways, he got knocked out and Daniel is in his place. Daniel Kuykendall (02:45): It was a Corona hit? Stephanie Kostopoulos (02:46): He is okay. I just want to say- Beth Demme (02:48): He's fine. Stephanie Kostopoulos (02:48): ... he is rescheduled. He doesn't have Coronavirus anymore. He is safe, but he is busy with work. And so, he will be on our podcast in the near future. And he'll be our second male guest. Beth Demme (02:58): As it worked out, it's just that everything has worked out the way that it- Stephanie Kostopoulos (03:00): Was supposed to. Beth Demme (03:01): That it was supposed to, the way that you had envisioned it from the beginning, that we would actually invite Daniel to be here in our podcast studio with us in person. Thank you for making a drive, because I know it was a big drive for you. Daniel Kuykendall (03:14): Yeah., about four-hour drive, but I would have driven that eight hours, 16 hours to be on this podcast with you guys. I'm honored. Beth Demme (03:19): Thanks. Thanks. Stephanie Kostopoulos (03:20): Just so you know, we will put a picture of this because it's pretty impressive. We are safely doing the podcast. We have a plexiglass between all of us and- Beth Demme (03:30): Sort of. Stephanie Kostopoulos (03:31): Sort of. There's a barrier between all of us. Daniel Kuykendall (03:32): Plexiplastic. Stephanie Kostopoulos (03:32): Well, there's a plexi... Yeah. Anyways, well, there'll be a picture. It's better to see it in person than- Beth Demme (03:38): You've just got to see this, folks. Stephanie Kostopoulos (03:39): You've got to see it. Beth Demme (03:39): You've just got to see it. Stephanie Kostopoulos (03:40): But it's done safely. We are being as safe as we can. We talked about a couple... A while back, we talked about Max, who is a Greyhound that was staying with me, and Daniel is Max's dad. And Max is here and we're so excited to have all... We have three humans and two greyhounds in the podcasting studio. I have referred to someone as my bro before on the show. I think so, if I haven't edited it out. I don't know. Daniel Kuykendall (04:06): You can't edit me out of existence. Stephanie Kostopoulos (04:08): I will not. Beth Demme (04:09): We'll put that in the words we use, which is a file that we've been keeping, that you can get on our website, dospod.us. Stephanie Kostopoulos (04:16): Exactly. So Daniel and I are good friends, but I also consider him like a brother. Daniel Kuykendall (04:20): We're family. Stephanie Kostopoulos (04:21): Like family, exactly. And so, I call him bro a lot and he's like my adopted brother. Beth Demme (04:28): The title of our today's episode is The Scars of a Lifelong Illness. And I've just got to say, Daniel, you look fine. What's wrong with you? Daniel Kuykendall (04:34): Thanks so much. Should I start at young childhood or my mental issues or... Beth Demme (04:40): Yeah, we want to cover all of it today. So you start where you're comfortable. Daniel Kuykendall (04:43): This is going to be a very long podcast. Guys, strap in. I hope you've got a long road trip. Stephanie Kostopoulos (04:46): This is what I said. I didn't know what to have on for, because there's so many things we could talk to him about. But today we have a specific topic, and we have hidden it within our title. We are ready to learn, Daniel, what is your illness that we can't see? Daniel Kuykendall (05:00): When I was 25, I was diagnosed with Type 1 diabetes. Beth Demme (05:06): That sounds very inconvenient. Daniel Kuykendall (05:09): It is, it is. It was a rather interesting set of events that led to that, and ones that the doctors still don't even really know how to classify. They basically said, "We have no idea why you got it. You just did." It was something that occurred over a long period of time, and it could have been my diet, it could have been stress-related, could have been some other external factor, could have breathed in the wrong pollen. I don't know. It could have been anything that led to this. Daniel Kuykendall (05:36): But Type 1 diabetes is an auto immune disorder in which my white blood cells do attack my pancreas instead of protecting it, which prevents my body from producing insulin, which is completely different than Type 2. We'll get into that a little bit later. But the warning signs for it were so unnoticeable until they all compounded together. It would be little things like driving down the road and road signs are a little fuzzier than normal. Daniel Kuykendall (06:01): Then there were some other things like I'd be taking a shower, and I'd be drying my hair off and I'd get a little dizzy. So I'd have to get up in the middle of the night and pee, and that was really weird. Eventually, all these things compounded together and I did a quick Google search. Beth Demme (06:20): Oh Google. Oh no. Google. Stephanie Kostopoulos (06:20): Oh, Dr. Google. Daniel Kuykendall (06:21): Oh, yes, which I usually tell people to stay away from. When my wife was pregnant, she was Googling all her little symptoms with pregnancy and all of them came back, "You have cancer," or some rare disease that's incurable that there's only been three cases of in the world. Google's not a good doctor. It's a terrible doctor. It's a very depressing doctor. So I Google it and it had 60 something million results for diabetes. Stephanie Kostopoulos (06:48): Oh wow. Daniel Kuykendall (06:49): And so, I'm like, "Crap." My mom is Type 2 diabetic, which is different, and I don't have Type 1 because my mom has diabetes. It's completely separate. I may get Type 2 as I get older because my mom has it and it's passed down the female line of the family, and Type 1's completely unrelated. Stephanie Kostopoulos (07:08): You said it's an autoimmune disorder or disease. Does that mean- Daniel Kuykendall (07:12): I like to use the term disorder because it's not a... It's not- Stephanie Kostopoulos (07:14): It's just auto-immune. Daniel Kuykendall (07:16): Yeah. I may be wrong there, but it's your body reacting incorrectly. Stephanie Kostopoulos (07:22): Yeah. So does that mean you're born with it, like you had it? Daniel Kuykendall (07:24): No. Stephanie Kostopoulos (07:25): So it just developed. Daniel Kuykendall (07:26): Just developed out of the blue. Stephanie Kostopoulos (07:29): How did that happen? Daniel Kuykendall (07:29): Could have been breathing the wrong air that day, stress, diets. My theory, for myself personally, is that my diet wasn't the greatest at that time in my life. I would skip breakfast, have a small launch, have a really big dinner. Now, when you do that, your body's... Your whole body's a muscle, right? There's muscles operating everywhere. And you have to work it out regularly. If you let it sit there and not do anything. And so my pancreas isn't doing any work at all for majority of the day. And then all of a sudden gets slammed with dinner with heavy carbs, and pastas, and pizza, something like that. Daniel Kuykendall (08:07): And all of a sudden, it's having to produce large amounts of insulin very quickly when it's been basically sleeping all day. Can fatigue it over time. And it could basically just say, "Well, forget you. I'm not working for you anymore." Stephanie Kostopoulos (08:20): I thought you were born with Type 1 and you could develop Type 2. Daniel Kuykendall (08:25): You can get Type 1 anytime in your life. It's more uncommon to get type one midlife and later. It's typically something that will develop early on in childhood, and which is just heart wrenching to me. Beth Demme (08:42): I am just going to express my ignorance here because I just realized I don't really know what the pancreas does. So what does the pancreas do? Daniel Kuykendall (08:50): It produces insulin. Beth Demme (08:52): Is that it? That's its whole purpose? Daniel Kuykendall (08:54): That's what it does. Stephanie Kostopoulos (08:55): So is yours like- Daniel Kuykendall (08:55): Now, it may have other purposes that I'm unaware of, and I may be ignorant ignorant on that fact. But that's the only one that really matters to me. Beth Demme (09:02): That's the one that's at least relevant for our conversation today. Yeah. Yeah. Daniel Kuykendall (09:03): Yes. It's very relevant to me, really relevant to the conversation. Stephanie Kostopoulos (09:05): So why is yours just sleeping on the job? What's the deal? Why is it not doing its job? Daniel Kuykendall (09:09): My white blood cells are attacking the islet cells that produce insulin. Stephanie Kostopoulos (09:13): So you have like a war inside of you? Daniel Kuykendall (09:15): Yeah. Yeah. Stephanie Kostopoulos (09:15): Wow. Daniel Kuykendall (09:15): Pretty much. Yeah. And so, at this point, my pancreas is probably 100% dead, whereas in the beginning, there's a honeymoon period, basically, where your body's still producing insulin, but it's being attacked. And after a certain point, it's unrecoverable. And even that, early on, it's still pretty much unrecoverable. So it's very difficult to, I would say, impossible, reverse Type 1 diabetes. Stephanie Kostopoulos (09:36): How do you know, since you developed it at 25, you said? Daniel Kuykendall (09:38): Mm-hmm (affirmative). Stephanie Kostopoulos (09:39): How did they know you had Type 1 and not Type 2 because you developed it later on? Like, what's the difference? Daniel Kuykendall (09:45): When obviously Googled the fate for the rest of my life, I went to my mom's house and checked my blood sugar, and it was extremely high. It was 630, which may not mean- Beth Demme (09:59): That sounds high. That's high. Daniel Kuykendall (10:01): It sounds high. Just to put it into perspective, if you're not diabetic, your blood sugar's going to average between 80 and 120 on the high end. So that means if you just devour a big sweet, delicious dessert, you may be closer to the 120 mark and then your body's producing insulin that's going to lower that number over time. I went in with 630, and so they immediately admitted me to a hospital room. Stephanie Kostopoulos (10:26): Oh, wow. Daniel Kuykendall (10:26): That blood sugar, because that's dangerously high. Being low is bad too. And both of them can land you in the hospital. And so, I was in the hospital for four days. I hate needles to begin with. Just that experience alone, it hadn't hit me yet. But coming in there with high blood sugar like that is, okay, this is diabetes. And it's most likely Type 1 due to the fact that my body's not correcting downward. Type II, your body's still producing insulin. It may not be producing enough or it's not as sensitive to it. Stephanie Kostopoulos (10:58): When I think of it, I think Type 2 is something that people develop from bad eating habits, and Type 1 is something that people are born with and it's not something that they really cause. It just happened. Is that accurate? Daniel Kuykendall (11:11): That is. There's something I'd like to add to the Type 2 message as well, because it's not just through bad eating habits. It also can be hereditary, so it can be passed on. Expand on that a little bit more, what is insulin? Why is your body produce it? What's its point? Anytime you eat food, you eat carbs or sugar, all that gets broken down... Well, not the sugar because it's already sugar. The carbs get broken down into sugar. Your body takes that and breaks it down into sugar, which is then dumped into the bloodstream for distribution. Daniel Kuykendall (11:45): Once it's in the bloodstream, insulin is that bridge, it's that corridor that allows the sugar to pass from the bloodstream into the muscles where it's then used as energy. So anytime you run, do any activity, you're thinking, your brain uses a lot of sugar. The insulin is responsible for converting that sugar into something that the muscles can use and your brain can use. So sugar is very important. Beth Demme (12:11): It sounds like insulin is very important. Daniel Kuykendall (12:14): Insulin is crucial because without that, it's like cutting the fuel line in your car. Yeah, sure. You've got fuel in the tank, but without the fuel line leading to the engine, car's not going to run. Stephanie Kostopoulos (12:25): It's a very man analogy. Thank you. Daniel Kuykendall (12:27): Yes. I've got to bring some of that testosterone onto your podcast. That's the basis for the purpose of insulin, and having an imbalance of sugar in your bloodstream that's not being utilized correctly by the muscles, can lead to some negative results. Stephanie Kostopoulos (12:44): Is this something that you have to be aware of like on a daily basis? Your- Daniel Kuykendall (12:48): Hourly. Stephanie Kostopoulos (12:49): An hourly basis? What does each hour look like for you? Daniel Kuykendall (12:55): My body is in constant flux and it needs to find that balance that non-diabetics get on a regular basis. Their body is analyzing the amount of sugar in the bloodstream and producing the correct amount of insulin to counter that. For me, however, my sugars go up and down. There's a lot of things that can cause that. It's not just diet. It's not just food. Obviously, if I have a packet of sugar, it's going to hit my system really quickly and my blood sugar's going to go up. Daniel Kuykendall (13:19): Stress can also cause it to go up or down. Different environmental factors can cause it to go up and down. So anytime I eat food, I have to be aware of what I'm eating, how many grams of sugars are in there, or how many grams of carbs. If it contains protein as well, because protein changes that number. It reduces the amount of carbs and sugars that your body is actually taking on. And then I have to run calculations because my body has a certain level of sensitivity to carbs and sugar, as well as a certain level of sensitivity to the insulin that I need to take in order to reduce the sugars in my system and allow my muscles to use it as energy. Daniel Kuykendall (14:01): So it's very complicated, and luckily they have some great devices. I've got a device called a PDM, which is an insulin pump which I have on my hip. I wear that on my hip and I have to change it every three days. What that does is it delivers a little bit of background insulin throughout the day. Helps to lower it overall. But every time I know I'm going to eat food, I need to first check my sugar. I do that by pricking my finger. Stephanie Kostopoulos (14:29): You do that before every meal? Daniel Kuykendall (14:30): Before every meal. Stephanie Kostopoulos (14:31): Wow, okay. Daniel Kuykendall (14:32): Not just that, but also throughout the day as well. So this morning, I skipped breakfast, which is not good. But I skipped breakfast, got in the car, drove up here. And along the way, I had to take insulin, even though I hadn't eaten. And it's just different... I have to check my blood sugar throughout the day. So I may check it six to eight times a day, typically. Stephanie Kostopoulos (14:53): Is your body more fragile than our bodies? Daniel Kuykendall (14:55): Yes. Stephanie Kostopoulos (14:56): Like are you more susceptible to things than we are as well? Like could you get- Daniel Kuykendall (15:00): I've got a compromised immune system. I get sick a lot more often. I've always had a very good immune system growing up and I would rarely get sick. I mean, it was once in a blue moon I'd get sick. Now anytime there's a flu going around or something like that, I'm pretty much guaranteed to pick it up. And my body's like, "All right, cool. Yeah, come on over here, virus. Hang out in here. It's nice and warm." Stephanie Kostopoulos (15:23): Immune compromise, or what do you- Daniel Kuykendall (15:24): Yeah. Stephanie Kostopoulos (15:25): Immune compromise. I've been hearing that a lot with the Coronavirus, is people are like, "I can't go out. I have to be really smart because I'm immune compromised." So you are one of those people. You are at high risk. Daniel Kuykendall (15:38): Yep. Stephanie Kostopoulos (15:38): And so, that means that if people aren't being smart around you, you could get it from people that are not being responsible. Daniel Kuykendall (15:47): Right. Stephanie Kostopoulos (15:48): Has it changed your lifestyle during... I mean, everyone's lifestyle's obviously changed during Coronavirus, but has changed... Do you make decisions based on the virus now? Daniel Kuykendall (16:00): I try not to leave the house unless it's absolutely necessary. My daughter's going back to school face to face, and that's a big decision for us because it increases our exposure risk. But we also had to weigh it so that the negatives of keeping her home. For one, I can't work because I'm... She's in first grade now. Just went to first grade. Stephanie Kostopoulos (16:22): And you work from home. Daniel Kuykendall (16:23): And I work from home. And so, I won't be able to do my job to earn money for our family if she stays home. If she goes in, they are practicing social distancing and the face masks and everything like that. And the capacity for the schools in Florida are about 30% face to face. So it's even reduced further. There's a chance that she could get it, but it's smaller than if we went to like a theme park or... Obviously, we're avoiding as much as possible, but it's impossible to avoid everything. I have considered getting one of those inflatable hamster balls that I can just roll around it. Beth Demme (16:58): Yeah. Round bubble. Yeah. Stephanie Kostopoulos (16:58): Oh yeah. Oh yeah. Daniel Kuykendall (16:59): I think that'd be great. I'm not even upset about that. Stephanie Kostopoulos (17:00): You could just put her in that, though. She would love that. Daniel Kuykendall (17:01): Yeah. Yes. Stephanie Kostopoulos (17:02): She would have a ball. She would have a ball. Daniel Kuykendall (17:04): That was so pun, puntastic. Stephanie Kostopoulos (17:09): Well, that's interesting. We're talking about your daughter. Is she aware of your diabetes? Daniel Kuykendall (17:13): Yes. Stephanie Kostopoulos (17:13): Does she know? Daniel Kuykendall (17:15): When I first got it, obviously, she wasn't born yet. So she's just grown up around it. There's never really any major conversations about why daddy got it or anything like that, but she's very well aware of it and she takes care of me so well. She'll bring me food. She'll bring me candy every now and then, say, "Daddy, if your blood sugar gets low, here's some candy." Yeah. It feels so good when she does that of [crosstalk 00:17:42]. Beth Demme (17:42): And she knows that you wear the pump? Daniel Kuykendall (17:44): Yep. Yep. She knows about the pump. She's helped me put it on before. I showed her the shots and the finger pricks and stuff like that. And so she's seen the whole routine and understands it. It's part of her life. She's grown up around it. So- Stephanie Kostopoulos (17:59): You've mentioned shots. Like you were saying, on your drive up here, you had to check your blood sugar, right? And so, then, there's some reading that you get that lets you know, "Oh, I need insulin." And so then you have to give yourself a shot of insulin. Is that what happens? Daniel Kuykendall (18:13): Yep. Stephanie Kostopoulos (18:13): Okay. Daniel Kuykendall (18:14): Yeah. Like I said earlier, with people that don't have diabetes, your blood sugar range is between 80 and 120. So the device I have, I prick my finger. There's a little droplet of blood. I put that on the sensor, and then it tells me what that number is. Basically, if it's above 150, then I'll typically correct. I'll give myself some insulin to lower it. You need insulin to lower the blood sugar, but you need sugar to raise your blood sugar. Stephanie Kostopoulos (18:41): So that's what she was saying. Like if your blood sugar was low, it was a low number, she gave you the candy to bring it up. Daniel Kuykendall (18:47): Yep. Stephanie Kostopoulos (18:47): Interesting. Daniel Kuykendall (18:48): High versus low is two completely different feelings, for one. High blood sugar, as I said, I get hot. I get irritable. I'm not a pleasant person. Stephanie Kostopoulos (18:59): So what are the signs when it's low? Daniel Kuykendall (19:01): Your body is basically preparing for a coma. Being low, your body's shutting down organs to protect itself. What it does is it's preserving the sugar that's left in your body for your brain, because your brain is the central nervous system of your body, and it helps tell everything what to do. So it's conserving what is left of the sugar in your body and sending it to the brain and shutting down everything else that it deems to be unnecessary. Daniel Kuykendall (19:25): The most interesting thing about it, which really freaks me out, when my blood sugar's low, I can't make decisions. I also start dumping sweats. I get shaky, so it gets hard to walk. But the decision-making thing is the weirdest thing I've ever experienced in my life. It's so bad that you could literally hand me a cup of arsenic and a cup of water and say, "Oh, you're thirsty? Which one would you like?" And I cannot tell you. I can't. That was one of the biggest challenges that my wife and I faced when I first started experiencing low blood sugars. Daniel Kuykendall (20:02): She'd ask me, "What do you need? How can I help?" I can't tell you. I could literally be looking at the solution directly in front of me and I would not be able to say, "I need that." Stephanie Kostopoulos (20:11): Wow. Daniel Kuykendall (20:12): It's a weird experience because decisions are something that we make every single day, and it's not a problem. But to not be able to make a decision, especially when the answer's obvious? Beth Demme (20:23): That's interesting, I guess, because your brain needs the sugar in order to really be able to function. Then you lose that ability when you're experiencing very low sugar. Daniel Kuykendall (20:33): Yeah. No critical thinking. Beth Demme (20:34): You said that you could develop Type 2 diabetes as a result of it being in your family. So what would that look like? Stephanie Kostopoulos (20:43): Yeah, what does that look like? Beth Demme (20:43): Would you be like, "I have Type 3, because I have Type 1 plus Type 2. Daniel Kuykendall (20:48): Superbetis. Stephanie Kostopoulos (20:49): She knows math. She's a lawyer. Daniel Kuykendall (20:53): So it's a- Stephanie Kostopoulos (20:54): Yeah. What would that look like? Daniel Kuykendall (20:55): Yeah. Yeah. My body's not producing the insulin, so then I have to take insulin externally. And then, I have to take more insulin because my body's not going to be as sensitive to the insulin I'm taking. So requires even more insulin to counter that. So it's a nasty little combo. Stephanie Kostopoulos (21:11): How will you know if you have Type 2? Daniel Kuykendall (21:13): I have calculations. So I know, all right, if I eat 15 grams of carbs, my blood sugar's going to go up about 65 points. And then, I also know that, "Okay, for every 10 points my blood sugar goes up, I take one unit of insulin." So there's strong calculation. Now, that changes over time, depending on the time of year. It can fluctuate as well, which is really interesting. Temperature can cause that to change. So it may not always be the same calculation. It's something I always have to keep an eye on, is this amount of insulin putting me back in range where I need to be, if it changes dramatically. Daniel Kuykendall (21:50): Down my left side is typically where I put my insulin pod. I've got external visible scars, as well as a lot of- Stephanie Kostopoulos (21:58): Like where the needle goes in? Daniel Kuykendall (21:59): ... internal scars as well. Stephanie Kostopoulos (22:01): Like where the needle goes in, there's actual scars? Daniel Kuykendall (22:02): There's cannula that's attached to my insulin pod, and it's basically a little tube. And so, each time I put it on, it has to punch that through my skin. It feels like somebody's taking a thumb tack and just jam it in and out. It's not very pleasant. Stephanie Kostopoulos (22:17): And you do that how often? Every few days? Daniel Kuykendall (22:18): Every three days. Yeah. You're constantly thinking about it. This is something you don't stop thinking about. I even I'm thinking about it at two o'clock in the morning if my blood sugar drops and it wakes me up and I have to eat... I'll typically get like a spoonful of honey and peanut butter, and that helps get it up fairly quickly. And I just have to sit in bed and wait till the panic of my body trying to go into coma mode cools down. And so, sometimes that takes an hour, hour and a half. So I lose sleep a lot of times if that happens in the middle of the night. Daniel Kuykendall (22:51): I think the worst part was really when I first came to terms with diabetes and what it is. This is when I was 25. So I still had that sense of invincibility. I'm invulnerable to life, and what it can throw at me, I can handle everything. All of a sudden, my body's broken, and going from feeling invincible to, "My body has failed me." I now looked at my body, not as a positive vessel that helps me achieve things, but something that has betrayed me, it's now turned against me. And there was no reason why it happened. Daniel Kuykendall (23:28): That makes it hard to come to terms with and understand, because you're always asking that question, what could I have done different? And I had no answer for that. I also felt like I was letting my family down, which is a weird thing to consider as well, because now I'm creating a whole nother burden for my family. This was before Scarlet was even born. So I'm just talking about my wife. I've created a whole new burden, whole new set of expenses. Who knows what my life is going to look like later in life? Am I going to lose a toe? I'm going to lose an organ? Am I just looking at basically suffering a crappy end of life, which she'll have to go through with me as well? I think that was probably the first time I cried since watching Lion King. Beth Demme (24:21): It sounds like you felt like you were damaged goods. Daniel Kuykendall (24:22): Yes. Yeah. 100%. I felt less valuable because it takes a lot out of you. It takes a lot of energy. If you think about a computer, I know Steph can get this reference. Beth, I'm not quite so sure. Beth Demme (24:37): Can we talk Windows? I could get it then. Stephanie Kostopoulos (24:38): Never. Daniel Kuykendall (24:41): If you're on a computer and you give it- Stephanie Kostopoulos (24:43): A Mac. Daniel Kuykendall (24:44): A Mac, yep, and you give it a task to do. You've got 100% of your processing power that you can use. If you tell your computer to do something like edit photos, of course that's what I pick, browse the internet, it's going to use a certain percentage of the total overall processing power. So if you think of managing diabetes as a process, and so, your mind is always on it. You're always thinking about it. You're always considering what meal I'm going to have. Just driving up here was a pain. Daniel Kuykendall (25:12): There's not many places I can go that I can get straight up just protein. Honestly, the keto diet's one of the best things a Type 1 diabetic can have. It makes it a lot easier managing all that. But just finding a place... So I stopped at Panera Bread and basically got one of their sandwiches without the bread. My blood sugar still is going up. I can feel it, because maybe the sauces they used in it or something. Just having salad dressing has a lot of sugar. So everything you consume is probably going to affect your blood sugar in some way. Stephanie Kostopoulos (25:45): Is there anything else that you really feel is like a scar that you carry around because of diabetes? Daniel Kuykendall (25:54): The way people talk to me. Stephanie Kostopoulos (25:55): Interesting. Can you elaborate on that? Daniel Kuykendall (25:58): When somebody talks about diabetes, the first thing they give is Type 2 diabetes. And there's some real nasty connotations that go around Type 2 diabetes, which some are honest and truthful, diet and exercise, stuff like that. People that don't do that, may have gained a lot of weight, are going to be more susceptible to Type 2. And that's what most people think of when they think of Type 2, is, "Oh, my old overweight grandma has got Type 2." Daniel Kuykendall (26:26): And so, the first thing everybody says to me when I tell them I've got Type 1 diabetes is, "Oh, you don't look fat." Out of the diabetics, Type 1's are the minority, and everything revolves around Type 2 diabetes. Doesn't really revolve around Type 1 diabetes. And so, it makes it challenging just correcting people's perception of it, because I get some really, not to be mean, but stupid questions about certain things. Stephanie Kostopoulos (26:55): What's a stupid question? Beth Demme (26:56): And how many stupid questions have we already asked today, right? Daniel Kuykendall (26:59): So many. So many now. You guys are asking questions, that's the big thing. One of my favorite ones is, any time I go out to eat somewhere, and I'm with people that know I'm diabetic, and I order something that has a little bit of sugar in it, perhaps, because you know what, I'm eating out and this is my reward. You've still got to reward yourself. I eat keto 99% of the time. If I go out, I'm going to risk having a little high blood sugar for a couple hours because I need that treat. Anytime I order anything that looks like it's got any kind of sugar in it, the first thing out of everyone's mouth is, "Are you sure you should be eating that? Don't let him order that." Stephanie Kostopoulos (27:39): I have 100% said that. I 100% do that. Beth Demme (27:43): So you can say that this is none of our business, but having a device that you have to wear all the time, that you have to change every three days, that you have to have insulin, you have to have probably additional doctor's appointments. That sounds really expensive. Daniel Kuykendall (28:02): Yeah. I have to have a doctor's appointment and have my blood drawn every six months, and that's with the endocrinologist, Beth Demme (28:06): You mentioned that you were worried you would be a financial burden for your wife, right? Daniel Kuykendall (28:10): Yeah. Beth Demme (28:10): How are you dealing with that? Daniel Kuykendall (28:12): Well, let me expand a little bit more on the cost. The insulin pods, before my insurance kicks in, we basically pay $2,000 a year. So that's what our deductible is. We pay $2,000 a year. It's basically 900... high mark. The pods basically come out to 900... Like if I were to buy them outside of insurance is $900 for three months supply of pods. Then there's another device that I usually have. I don't have it right now due to insurance fund stuff. It's the Dexcom GCM, Continuous Glucose Monitor. And what that does is it's another device I wear with a little wire that sticks in my side, and it constantly reads my blood sugar. Daniel Kuykendall (28:55): So anyways, that also is about $900 for three months supply. So now we're talking $1,800 every three months, plus doctor visits, plus cost of insurance. It wasn't so bad in the very beginning. It was 450 bucks for our family, covered me really well with diabetes and covering the medical equipment, which is expensive. It covered that. It covered the doctor visits, covered everything else. It was fantastic. I think we paid like 50 bucks, or 35, or 50 bucks whenever we'd go to the doctor. So that was great too. Then they made the change with the Affordable Healthcare Act, about bankrupted us. Stephanie Kostopoulos (29:32): Interesting. How so? Daniel Kuykendall (29:33): That was right around the time that I stopped receiving benefits from Apple. Stephanie Kostopoulos (29:39): You went full time... You have your own company, and so you didn't have insurance through a business- Beth Demme (29:47): Employer. Stephanie Kostopoulos (29:47): Employer. Yeah. Daniel Kuykendall (29:47): Yep. I didn't have access to a grandfathered plan, basically. Understand, when you implement new programs, there is always trial and error. But one of the things I really appreciated about it was that you can't cancel insurance on preexisting conditions. Not cancel, but- Beth Demme (30:05): Deny coverage. Daniel Kuykendall (30:05): Yeah. You can't deny coverage. Thank you. Yeah. You can't deny coverage for preexisting conditions. I thought that was a great addition to the bill. I went straight on to Affordable Healthcare Plan with the marketplace and everything. It was all right at first. The prices were good. Then six months later, it changes. What was covered before, there's now some small differences. Like what's considered a medical device, I think changed. Then it went up again six months later, and eventually got up to $1,800 just for me. Daniel Kuykendall (30:41): The deductible's high too, so we were now at the $2,000 deductible range, and then the doctor visits and everything else. So now I've become a massive financial burden on the family. And this was the very first time in our lives that we've ever had to take government help. It skyrocketed, and there was a reason. It was $450 for the entire family. Everything was fine, and now it's $1,800. It didn't make any sense. But we couldn't afford it. It was either that or we file for bankruptcy. But we still have to pay this insurance. Daniel Kuykendall (31:07): So it was a very, very, very rough. There was a lot of times where I remember my wife crying, and I was on the verge of tears as well. And I felt terrible because I'm causing this. Yeah. So that shaped my opinion of that. I'm sure it's done some great things for some people and- Beth Demme (31:28): I wonder if your experience with the Affordable Healthcare Act would have been different if you had moved out of employer-provided insurance before, if there had been more of a gap? My personal experience with the Affordable Healthcare Act is that we couldn't get insurance unless we created a two-person company, which we did so that we could get group insurance. Daniel Kuykendall (31:50): Nicely done. Beth Demme (31:50): But then once we had the Affordable Healthcare Act, we could go on the marketplace. And even though we didn't qualify for a subsidy, we were still at least able to get insurance that way. And it is very expensive for us. I mean, as a family, we pay around $1,500 a month, so about $18,000 a year. And then we have a $10,000 a year deductible. So it is very expensive, but at least we have access to it. Stephanie Kostopoulos (32:13): One of the things that I always think of when I think of you, because this is like, in my experience, every time I talk to you, interact with you, is you're so positive. And it's always baffled me because it's like I know this about you. I know the diabetes. I've heard all these things. But it always baffles me how positive you stay. In life, you stay so positive. How? And can we bottle you up in a pill form? It's two questions. Daniel Kuykendall (32:38): Yeah. I've always been positive. That's my baseline. So I don't know how to be anything else. And so, it's hard for me to understand what it's like to be anything else. When I got diabetes, it definitely affected me in a way that I've never experienced before. I've done some dumb things in life and had to pay the consequences. So I've had some real strifes that I've had overcome, and challenges. But when I hit this point where I felt like my body was broken, this is the first time I've ever felt depression, and I've had a battle that. Daniel Kuykendall (33:15): But I always revert back to my baseline of being positive. So I always find some way to look at it that makes me laugh. Maybe it's just my sense of humor. I don't think there's anything that I can't laugh at, which can get me in trouble sometimes. But my humor is what gets me through challenging times, and understanding that everything in life is relative. Stephanie Kostopoulos (33:43): Now it's time for questions for reflection. These are questions based on today's show that we have written, and Beth will read them and leave a little pause between, and if you want to answer them to yourself right now, you can, or you can download a PDF on our website. Beth Demme (33:57): And make sure you stay tuned for a Slice of Life. Number one, are you or someone you know dealing with a lifelong illness? Do you have scars from that? Number two, do you struggle with healthcare? Have you thought about how our healthcare system affects people with preexisting conditions? Number three, do you have any stereotypes around people with diabetes? How does Daniel's story challenge those ideas? And number four, do you tend to judge people for their illnesses? Why is that? Stephanie Kostopoulos (34:36): Well, I do... That was perfect timing. I don't know if you heard that, but that was my lovely dog letting us know she's still here. Daniel Kuykendall (34:44): It's because I pet her. Stephanie Kostopoulos (34:45): Did you acknowledge her existence? Beth Demme (34:49): Oh no. Oh no. Now you started it. Stephanie Kostopoulos (34:50): Well, it was perfect because I was going to say this will all be edited out, but midway through the podcast, I did get so much annoyance from Mac that I realized I need to feed her. So I did feed her, halfway through, and they had some kind of conversation that I will hear during the edit of what they talk about. Beth Demme (35:07): Yes you will. Stephanie Kostopoulos (35:07): It'll be great. Maybe it'll be edited in the episode. I don't know. Daniel Kuykendall (35:11): It better be. Stephanie Kostopoulos (35:12): It may be. I don't know. If it was really good. If it was... Beth Demme (35:14): We'll never know. Stephanie Kostopoulos (35:15): I'll know. I'll know. So, Daniel, when we have guests and we are honored that you are our first male guest. We are so excited. Beth Demme (35:24): Bravo. Bravo. Well done. Stephanie Kostopoulos (35:25): Woo. Woo. Way to be male. Very good. We do- Daniel Kuykendall (35:28): Where do I mark my territory around here by the way? Stephanie Kostopoulos (35:30): Max already did outside. It's cool. Mac [inaudible 00:35:34] that, and then Max again. It was great. It was great. Beth Demme (35:35): Well, it's good for him to get some props for being a man, because that probably never happens in society or culture. Stephanie Kostopoulos (35:42): That's true. Beth Demme (35:42): So we want to make sure that we give you all props that you deserve. Daniel Kuykendall (35:44): Can I hear it one more time? Stephanie Kostopoulos (35:45): Good job, man. Good job. Beth Demme (35:47): Way to represent. Stephanie Kostopoulos (35:48): Way to represent the males. Daniel Kuykendall (35:49): I feel better now. Stephanie Kostopoulos (35:51): I do want to say, actually, we are going to have him on for two more episodes that we've already planned. We haven't recorded them yet. We're going to record them in the near future. But we have two more episodes, because, like I said, we couldn't decide what to have him on for because there were so many good things to talk to him about. Stephanie Kostopoulos (36:05): Daniel, we've had this whole conversation with you about your lifelong illness, but I realize that we haven't talked about what your profession is, and it's not super important obviously to diabetes, but I think it's really cool. So I wanted you to quickly share, what do you do, Daniel? Daniel Kuykendall (36:19): I am a commercial photographer, as well as a commercial videographer, and a survival filmmaker, where go out in the woods and film our experts, and they teach you how to do all these skills and crafts. We go through and we find the best experts for those. We've got over 30 hours of edited content that's concise and straight to the point and packed with skills that you can learn to help you survive out in the woods. Stephanie Kostopoulos (36:45): Very, very cool. Well, I already knew that, but I wanted everyone else to know how cool you are. Daniel Kuykendall (36:50): Love you, Steph. Stephanie Kostopoulos (36:50): Then we always like to ask a question of our guest, and so I'm going to have Beth ask it. Go for it, Beth. Beth Demme (36:57): What book, TV show, or podcast are you super excited about? Daniel Kuykendall (37:00): Besides this podcast? Beth Demme (37:03): Yes. Stephanie Kostopoulos (37:03): Thank you. Thank you. That was the right answer, besides the podcast. Yes. Besides our podcast, obviously. Daniel Kuykendall (37:09): Let me see. A book I read recently that I really liked, it is super dark. It's like- Beth Demme (37:16): You can just like what you like without any caveats. Daniel Kuykendall (37:17): Yeah, no. I've got no problem with that. But I'm just warning anybody who might decide to pick up the book and give it a read. It's extremely dark, just be prepared for it. I liked it because it affected me on levels that I didn't expect. It's called Dark Matter. It's a sci-fi book basically about somebody who... He gets shifted into alternate parallel dimensions. And so, he experiences things that are very similar, but different. Relationships are different, the way people interact is different. Daniel Kuykendall (37:47): And then, he starts running into other copies because another him in another parallel universe did the same thing he did. And so, there starts to be more parallel copies of him roaming around these different parallel universes. Beth Demme (38:03): That sounds super confusing. Daniel Kuykendall (38:06): It's amazing. It's done in a very simplistic way. So it's easy to understand when you're reading the book. Stephanie Kostopoulos (38:13): I actually have been reading something really dark too, that I didn't really want to talk about. But now that you said that... It's really dark, and it gets darker as it continues. Daniel Kuykendall (38:25): Yes. That's how this one is. Stephanie Kostopoulos (38:25): Yeah. It's actually called Harry Potter and the Sorceror's Stone. Daniel Kuykendall (38:30): Oh my God. Yes. That gets... I mean, the- Stephanie Kostopoulos (38:33): It gets darker as you go on, right? Beth Demme (38:34): It's true. [crosstalk 00:38:35]. Daniel Kuykendall (38:36): Yeah. There's a dark sorcerer who's literally embedded himself in the back of somebody's head. Stephanie Kostopoulos (38:40): I know. It's very dark. Beth Demme (38:42): Don't give away the ending. Stephanie Kostopoulos (38:42): Don't give it away, but it's very dark. That thing, the head that's in there, that becomes a full-fledged person throughout the whole series of the book. Beth Demme (38:52): Wait, I thought you said you were just reading it. Stephanie Kostopoulos (38:54): No, I'm rereading it. Beth Demme (38:55): Oh, rereading it. Stephanie Kostopoulos (38:56): Yes. Because I- Daniel Kuykendall (38:56): For which time? Stephanie Kostopoulos (38:58): Oh, who knows? But it's very dark. So I don't like to talk about it too much because I don't want people to... Daniel Kuykendall (39:04): Get freaked out? Stephanie Kostopoulos (39:04): Yeah. Think I'm like a wizard or something, that I am a wizard. Daniel Kuykendall (39:08): Since you brought that up, do you have recommended therapists that you can offer the listeners, now that they're scarred? Stephanie Kostopoulos (39:15): I just recommend you don't read Harry Potter unless you want some really dark entertainment. Beth Demme (39:20): I love Harry Potter. I didn't get the dark at all. Stephanie Kostopoulos (39:22): Do you think I'm being serious right now? Beth Demme (39:24): Oh, okay. He was serious about his book being dark! Stephanie Kostopoulos (39:27): I know. Before, he said the name of it, the whole thing I was thinking, "This would be so funny if he says Harry Potter." Daniel Kuykendall (39:33): Yeah. The problem is Steph and I can go down a joke line, but be completely serious about it and see who breaks first. Stephanie Kostopoulos (39:39): Yes. So it's a... Sorry. Beth Demme (39:40): I broke. Stephanie Kostopoulos (39:41): You broke. You were like, "But it's not that bad." Beth Demme (39:43): "Why are you saying it's dark?" I was like, "There is a sorcerer in the back. He does become a real. What's going on?" Stephanie Kostopoulos (39:49): I'm sorry, Beth. Beth Demme (39:51): Well, I'm reading a book called The Vanishing Half, and it's fascinating. It's complete fiction, but it's about African-American twins in the 1960s who live in Louisiana. They are very light-skinned. One of them decides she's going to live as a White woman. They leave home, and then one day she just doesn't come home to the apartment that she was sharing with her twin sister. And the twin sister continues to live as an African-American person. But then, so- Stephanie Kostopoulos (40:19): Wait, is this a real story? Beth Demme (40:20): No, no. It's total fiction. Stephanie Kostopoulos (40:21): Oh okay. Beth Demme (40:21): No, it's total fiction. It's total fiction. But it's- Daniel Kuykendall (40:22): I was hoping it was real. Beth Demme (40:24): I know. Daniel Kuykendall (40:24): That's one of those true stories you're like, "Man, that's crazy." Stephanie Kostopoulos (40:28): That's interesting. Beth Demme (40:28): Yeah. That'd be crazy. Yeah. But it's really interesting just to see how the author deals with their different lives in that parallel way, through the sixties and seventies. I'm not all the way done, so I'm not exactly sure how far it will go. Daniel Kuykendall (40:40): The author, is she like White or Black? Beth Demme (40:44): I think it's a Black woman. Beth Demme (40:45): So Daniel, where can people find you? Are you on Twitter? Are you on social media? Is your business online? Stephanie Kostopoulos (40:51): What's your home address? Daniel Kuykendall (40:53): We're on Twitter, Facebook, and Instagram. Though, I absolutely abhor social media. I don't typically do the posts. My business partner does posts, and he's the one that- Beth Demme (41:02): Virtue signaling. We're going to have an episode about that. Daniel Kuykendall (41:05): How is that virtue signaling? Stephanie Kostopoulos (41:07): Exactly. We need to find out. We are going to do a podcast episode about that because I am very intrigued as well. Daniel Kuykendall (41:13): I find it toxic. Stephanie Kostopoulos (41:14): You'll learn about it in our episode. Daniel Kuykendall (41:17): Cool. I can't wait. Stephanie Kostopoulos (41:17): And I will learn too. Daniel Kuykendall (41:18): And so, you can find us on there. Just search for The Survival Summit. We've got a website, thesurvivalsummit.com, and yeah. We're also on YouTube as well. You can find a lot of our content on YouTube. So if you want to preview what our films are like a little further than just what you'll find on our... Our website has the trailers for our films, so you can check that out. But you can see actually some of the chapters for the films on our YouTube channel. Stephanie Kostopoulos (41:40): Well, thank you, Daniel, so much for coming today. We were so excited to have you, and I can't wait to edit the two-hour episode into 45 minutes. This is going to be fun. Beth Demme (41:48): You can do it. You can do it. Stephanie Kostopoulos (41:49): I can do it. I'm excited. Daniel Kuykendall (41:50): A lot of fixing in post. Stephanie Kostopoulos (41:52): Thank you. We can't wait to have you on again for two more episodes in the future. When that will be, I don't know. It's on our schedule. Beth Demme (41:59): Stay tuned. Stephanie Kostopoulos (42:00): This has been the Discovering Our Scars Podcast. Thanks for joining us.
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Meet StephMental Health Advocate. Author. Podcast Host. DIYer. Greyhound Mom. 
Meet BethI'm a mom who laughs a lot, mainly at myself. #UMC Pastor, recent Seminary grad, public speaker, blogger, and sometimes lawyer. Learning to #LiveLoved. 
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