Diagnosed, not defeated with Phyllisa Deroze

4/21/2019 by Scott Johnson

Getting diagnosed with diabetes is scary and confusing. But finding out you only have part of the tools you need and then having your home destroyed by a natural disaster not long after makes it that much worse.

Those are only some of the experiences Phyllisa Deroze went through when she was diagnosed. You may know Phyllisa from her amazing blogging work at DiagnosedNotDefeated and BlackDiabeticInfo.com as well as her active involvement in the online diabetes community. She works hard to provide the world with culturally relevant information about diabetes.

Summary

  • Phyllisa's diagnosis story
  • Adjusting to life with diabetes
  • Where "Diagnosed, Not Defeated" came from
  • Why culturally relevant information is important
  • The stigma around type 2 diabetes
  • Getting started blogging and helping others
  • An update from Miles of Portraits

Video

Transcript

Scott Johnson:... Has diabetes ever kicked you while you were down? It has definitely happened to me, and I bet it's happened to you too. What do you do? What do you do? The fact that you've tuned in today, tells me that you are a strong person. You somehow found a way to stand back up and keep moving on, and I'm proud of you for that. That skill–and that resiliency is a skill–will serve you well through your life with diabetes. What's up, Monster Tamers? Welcome to another episode of “Live, with Scott!” Thanks so much for tuning in. My name is Scott Johnson. I've been living with diabetes since I was five years old, and the diabetes social media space, that's you, by the way; has been an important part of my well-being for a long, long time. Thanks so much for helping me along. As your host today, I am thrilled to connect you with Phyllisa, because her journey with diabetes, and perhaps more importantly, what she created from that journey is a story that simply needs to be heard. Now, while we get going, please share a quick "Hello" in the comments, and let us know where you're watching from. Today's episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support, and more, all for just 49 dollars per month. Learn more at mysugr.com/facebooklive. For more on this week's guest, Phyllisa Deroze is a trailblazing blogger who brings an African-American perspective to the blogosphere. She's very active in the diabetes online community, where she strives to maintain a leadership role in educating others about type 2 Diabetes from a patient's perspective. Let's get right into it. Hey, Phyllisa. How are you? Thanks for joining us today. Phyllisa Deroze: I'm fine. I'm glad to be here. Scott Johnson: Likewise. As we were mentioning just a moment ago, we've talked so long online, but this is, believe it or not, the first time that we've connected face-to-face, even though it's computerized. But it feels like I've known you for a long time. Phyllisa Deroze: Yes. I agree. Scott Johnson: And it's a treat. It's a treat. But there may be folks joining. I hope that there's folks joining us today that don't know much about you. Can you start off by telling the viewers a little bit about yourself and your story, and your connection to diabetes? Phyllisa Deroze: Yes. My name is Phyllisa, and I live with type 2 Diabetes. I was diagnosed in February 2011, actually, Valentine's Day night, I passed out in my bathtub, and I woke up the next day... So the 15th. I woke up the next day, packed a bag. I knew that I was not going to return home until someone told me what was wrong with me. I had this experience, like mystery diagnosis. I was frequently urinating, I was extremely thirsty, and you would think, "Ding, ding, ding. Classic diabetes symptoms." But I didn't know what classic diabetes symptoms were. When I went to visit a physician, she didn't know either, I guess? Because she told me that because I don't have a family history of diabetes or anything else that my frequent urination and extreme thirst were more likely due to working out five days a week, and so I needed to drink Gatorade. I left her with a remedy of drinking Gatorade, and that was going to cure me. Within that week, the extreme thirst, frequent urination, significantly increased; along with tingling in my feet, my hands, blurred vision, chronic yeast infection... Everything that a woman could have, I had it. When you have high blood sugar. Scott Johnson: Yeah. Phyllisa Deroze: So after passing out, I went back to her and said, "Listen. Something is seriously wrong with me." I was also losing a pound a day- Scott Johnson: Wow. Phyllisa Deroze: Within that time, and so she told me that I was not a case for the emergency room. My blood sugar didn't register on her machine. Her assistant, when she stepped out, whispers, "Your glucose isn't registering. That's not a good thing." I didn't quite know what that meant. I just knew I didn't want a healthcare provider whispering anything to me. Scott Johnson: Yeah. Phyllisa Deroze: Like, that whispering meant to me like, "Something is seriously wrong with you." I called my mom immediately, who is a nurse, and she was like, "Yeah. You need to go to the emergency room. Your glucose isn't registering?" I had to sign a waiver from my doctor who believed that I was going against her wishes by going to the emergency room. But it was there that I was asked politely and casually, "How long have you had diabetes?" I was like, "Diabetes? I don't have diabetes." She was like, "Yes, you do." We both were looking at each other very perplexed, like, "Yes, you do." "No, I don't." "Yes, you do." "No, I don't." That was how I was diagnosed. She turned the glucometer around and said, "With like 593, not only do you have diabetes, but you're going into a coma." That explained why I passed out, that explained all my symptoms. It was kind of like a mystery diagnosis has been solved, but I didn't know anything about diabetes. It was very scary, because I was alone at the time. Yeah. I just kind of had to figure things out. I don't think any of the pamphlets I received in the six days that I was there was helpful. First of all, they gave me pamphlets on type 1 and 2, because they had no idea what I was. Scott Johnson: Right. Phyllisa Deroze: And didn't know until I was discharged, ten days later. Scott Johnson: What was... Let's dive a little deeper into your stay at the hospital. I'm imagining... You're in just both a physical but also emotional and mental... Intellectual whirlwind, right? Just trying to digest what is happening to you, you're feeling all these things, and the hospital is working to get your blood sugar back down in range safely, which also is... After you've been riding so high for so long, your body is experiencing what it feels like to start coming down, which is... That doesn't feel good, even though it's good. That's traumatic in itself. Then there's all these different people coming in and out of the room, throwing all these terms at you that don't mean anything, because why would you know anything about diabetes before that? Wow, right? Let's just sit with that for a second, right? Oh my goodness. Phyllisa Deroze: Yeah, and I had never been in the hospital for anything. That was my first time ever staying the night in a hospital, and then I stayed six nights. I was away from family, which meant that every time that door flew open, I knew that no one who loved me was behind the door. That was a lot. At your sickest point, you passed out. You were going into a coma, and to not have a loved one to be there to hold your hand, that was, by far... I would say, the loneliest time in my life. When I was single, I thought, "Oh, I don't have a husband, I'm lonely." No. This level of loneliness surpasses anything that I had ever experienced. It was a lot, especially because what I knew of diabetes was that it happened to older people, and the pamphlets I received confirmed that. So I had type 1, with teenagers, and then type 2 with senior citizens. But here I am, in my 30s. What does this mean? I thought diabetes happened when you were older. I thought it happened to couch potatoes, but I was working out five days a week. I didn't understand how, and then I thought, "Maybe it's something that genetically happens to people, so it's in your family." But it's not, and my family... I always knew I was special, but I'm really special. I don't have any close relatives that I can even talk to about diabetes management. So, the level of loneliness, the level of just trying to figure out, like, how the heck did this happen to me? I had questions every waking moment. What does this mean? Am I going to have to have injections for life? Not knowing what type I was, what does this mean? I didn't even know that diabetes was a chronic illness without a cure when I was told that I had diabetes. Part of me thought, "Oh, when I get discharged from the hospital, then I'm no longer going to have diabetes." Then about day three or four, it was kind of like... No. When you leave the hospital, you'll also be leaving with this insulin, with this glucometer. Your life is not going to be the same. Even processing that was a lot. Scott Johnson: Yeah. I can imagine. I mean, then I have the pleasure and privilege of knowing all the amazing work that you've done since all that. But you leave the hospital. What was it... Talk to us about getting your feet under you. What did you do to become educated and empowered, and take the next steps? Which we'll talk about in a few minutes. Phyllisa Deroze: The first thing I want to share is the night that I was discharged. I was discharged in the evening around 6:00 or 7:00, or so. I was told that at bedtime, I had to check my blood sugar, and then give myself my bedtime insulin dosage. Around 9:00, 9:30, I dump the bag out and I discover a glucometer without any strips. I discover an insulin pen without any needles. Scott Johnson: Makes life a little hard, right? Yeah. Phyllisa Deroze: I didn't know what was happening here. I thought, "Oh, well let me go to the pharmacist and get strips and needles." I went to the first pharmacist, and I remember seeing the price tag. $89.99 for 50 strips. I thought, "Could that be real? Maybe it's just this pharmacist." So I left and drove to another pharmacist where I saw, again, $89.99 for 50 strips. I didn't have $89.99, and I... All I knew is: I have to check my blood sugar. I need these strips, and I don't have $89.99. The first night that I was discharged, I was slapped in the face with the high cost of diabetes management. My husband had to wire me the money. He was living in France at the time, so he had to wire me the money for needles and test strips. That was the first night, and then I was just kind of in a- Scott Johnson: Hold on. I'm sorry. Let's just pause there for a second. It's... We're not going to just skip over... Shame on... Shame on everyone who just sent you out of the hospital without everything you needed, right? Not only... Not only the information, but you had only half of the stuff to do what they asked you to do. You had to figure all that stuff out on your own. That's terrible. Terrible. Phyllisa Deroze: I actually went back to the hospital. After seeing two pharmacists for $89.99, I was just like, let me go back to the hospital and let them know, like, "You didn't give me everything." They wouldn't see me. They told me that because I was discharged, I would have to go back to the ER and start all over, and I still had the band on my wrist. I just got discharged three hours ago. Can I just go back upstairs and tell that nurse she didn't give me the... And they were like, "No." Security would not let me in, and they told me, "You can go to the ER." So I would have to go over back again. Then after that, breaking down in the emergency room, confused, newly diagnosed, alone. That was when my husband was like, "I'll just wire you to get your strips and just go home." Scott Johnson: Wow. We wonder why... I think, unfortunately... Your experience, as awful as it is, is probably much more common than what we would like to think about, and we wonder why there are so many people living with diabetes who kind of fall off between that initial diagnosis and then the aftercare. I'm sorry that that happened, and if... Thank goodness you're so resilient, and in many ways, just stubbornly determined to figure things out and take good care of yourself. Phyllisa Deroze: Yeah. Yeah. I mean, it's not easy either. As I was learning about living with diabetes and what that meant, I had to do a lot of searching for information that would not slap me in the face with grim statistics about how I'm going to die. I feel like when you're newly diagnosed with diabetes, and you're looking for information, you have to read though, "You're going to die this way, or you could possibly die that way. Or maybe you'll get an amputation, or maybe you get blindness." You have to fight through all of that to finally get to, "Here are things you can do." And it sucks that we have to do that. Part of my goal is to provide a space where people don't have to weed through these grim statistics. If there's one thing that you know about diabetes... I think back when I was in the hospital, if I could sum up the one thing I knew about diabetes, it was that it kills people. I don't need to be reminded about diabetes being able to kill people. I want to know, what does it look like to eat now that I have diabetes? How can I exercise now with diabetes? Like I said before I was diagnosed, I was working out five days a week. Well, now having diabetes, it complicated things. I needed someone to teach me how now to exercise. A lot of the information was like, "Just exercise." Well- Scott Johnson: What does that mean? what does it look like? Yeah. What do I need to watch out for? Absolutely. Phyllisa Deroze: Yeah. Scott Johnson: Yeah. Another... I don't want to shortcut part of that, so if my question... Fast-forward to the process at all, please bring me back and take this wherever you want to. At what point in your journey through all of this did the... “Diagnosed, not defeated” come in, and at what point did that really take hold for you and start? Phyllisa Deroze: Very early on, actually, because I was just so alone and not wanting the diagnosis to send me under emotionally. I knew that I had to step away from some of the more readily-accessible diabetes information. Fortunately, I did discover the diabetes online community, the DSMA radio talk show, I loved. Scott Johnson: Thank you, yeah. Big shout-out to Cherise (Shockley) for that. Phyllisa Deroze: Yeah. I mean, it was just a lifesaver to hear people living with diabetes joking and laughing. Then I created a Twitter account and joined in the weekly #DSMA Twitter chats, which was really nice. That, to me, was the emotional anchor that I needed. I felt like, for the most part, a lot of the diabetes information catered to, say, medication or medical treatment, or medical devices. But I was emotionally in a rut, and I needed something for that. When I created the motto, "Diagnosed, not defeated," I wrote it on my wall. I put in my bathroom. I put it in the living room. It was just everywhere. It was the thing that kept me from a lot of the emotional lows. I was just like, "I can't be defeated by this. I cannot let this diagnosis get me." I would say, very early on, I started blogging practically from the hospital, because I wanted family and friends to know what was going on. I didn't have the emotional space to every single friend, so I wrote it, and I just sent it to them like, "This is what has happened to me." Everybody, in terms of my close friends, wanted to know, "How the heck did that happen to you, Phyllisa? You work out all the time. You're the one that eats tofu. How did it happen to you?" I was just like, "I don't know!" That's the thing about an epidemic. An epidemic happens to new people. It happens to people who don't have that genetic connection, that don't have this... You know, whatever these things are. It's an epidemic. It's growing. Creating the blog was the thing that motivated me every day to continue doing what I was doing. I just felt like the diagnosis would send me under if I allowed. Just hearing that you're going to have to do this, whatever "this" is, whether it's injections, checking your blood sugar, popping a pill; whatever it is, you're going to have to do this for the rest of your life. For that to sink in, it takes a lot, especially as a spiritual person, because I believe in miracles. How do I then continue believing in miracles and then also accepting that I'll have this for the rest of my life? Scott Johnson: Yeah. Phyllisa Deroze: For some people, that becomes a point of conflict. I know it has happened to people I know where they don't take their medication. They rebuke diabetes. They rebuke the diagnosis. Scott Johnson: Yeah. Phyllisa Deroze: I needed to be in a healthier space where that didn't happen to me. Also, none of the treatment and none of the material that I've ever read on diabetes brings my spirituality into account. Scott Johnson: Yeah. Phyllisa Deroze: That motto just saved me. My blog saved me, and I remember the day that I had finally reached the point where I wasn't crying every single day. I wasn't just crying, Scott. I was sobbing. I remember being in the store, and this woman comes up to me. She's like, "Oh, your hair is nice!" I was like, "I have diabetes!" I was just sobbing. I literally got to a point where I didn't care where I was. I didn't care who saw me. There was no shame. I was just like, "I have diabetes." I was just sobbing. Phyllisa Deroze: But my blog, where I had this idea that I was going to do a Julia-Julia version of clicking with diabetes, but I was going to start with Patti LaBelle's book, because she's a diva, and I'm a diva too. I had gotten all this chicken and whatever else Patti LaBelle said I needed to get in her cookbook. On my way home, I had this gut-punching feeling. It turned into... It was a Walmart, but to turn into the store, like a mile from my house. I had just left the grocery store. Literally, I just left everything, got everything packed up, but when I passed this store... I mean, it was like something just hit my marrow of my bone. It was like, "You've got to turn." I just turned. I'm not questioning it, I'm just going to be an obedient person to this. Well, me being obedient saved my life yet again, because when I left the store, my home was destroyed in a tornado and I had just missed it by two minutes. The people thought I was at home. It was just that close. Scott Johnson: Wow. Phyllisa Deroze: Had I not... Had I not turned and took that ten minutes in the store... Literally, when I was in the store, I was like, "Girl. You're an idiot, why'd you turn in here? Because you had a feeling to turn here?" I started questioning myself. I'm glad I turned. Scott Johnson: Mm-hmm (affirmative). Phyllisa Deroze: I could say 61 days later, after I was diagnosed, I now had nothing. I had no refrigerator to keep my insulin cold. Scott Johnson: Or all those groceries that you just came home with. Phyllisa Deroze: Yeah. Scott Johnson: Wow. Phyllisa Deroze: I was at a low. So when I tell you, "Diagnosed, not defeated," I don't know if it saves anybody else, which I hope it does. But it saves me. It is the thing that I cling to, day in and day out. Scott Johnson: It's very... I mean, I'm still letting the power of that story you just shared sink in. I know that it has... I have enjoyed it. It has powerfully affected me in many ways, and I very much appreciate you being brave enough to share everything that you share through your channels. I have a shirt. I have a shirt, and speaking of that, I can't... I haven't been able to find that since moving, so I need to open up some more boxes. Yeah, because I need to find that shirt again. It's one of my favorite diabetes shirts. Thank you for that too. Phyllisa Deroze: You're very welcome. Scott Johnson: But yeah. I definitely... I know that it has affected many people. One of the other things that you do through all of your channels is you bring culturally-relevant information about diabetes. Can you talk about that a little bit? That also is one of your missions, right? Phyllisa Deroze: Yeah, it is. I started my blog post, like I said, almost immediately. Then a year later, I started Black Diabetic Info, partly because in that year I was searching for information like, "How do I eat grits now? How do I eat gumbo now? How do I eat Jamaican beef patties? Do I really have to give up all of this?" I needed food information, I needed exercise information that was culturally relevant to me, not only as an African-American, but an African-American that lives in South Florida that has access to Bohemian food, Puerto Rican food, Cuban food, all kinds of dishes. I've probably seen maybe two or three nutritionists in that time, and never once, when they say, "Okay, go over there and fix your food." Never once have I seen fake plantains. I can't put plantains on my plate. I haven't seen fake cornbread. I can't put cornbread, hoppin johns, black-eyed peas and rice. When you tell me to fix my food with these options, it's really not how I eat. Additionally, when I did constant searches on African-American diabetes and black diabetes, and this and that; things were just grim statistics. I wanted to have a different link pop up in the algorithm if someone were to search those words. That's where it came from. Very early on, I remember someone asking me about black diabetic info, and I said to them, "Do you listen to Beyonce?" "Yeah, I listen to Beyonce." Did you like Michael Jackson's music? "Oh yeah, who didn't like Michael Jackson's music?" So you don't have a problem with black music, right? Why would you have a problem or an issue, or even question when diabetes information is given that black sound? As human beings, we learn from everybody, right? I'm learning the same history as someone else. I'm learning the same this and that, and so for me, I feel like everybody loves soul food, just like everybody likes soul music. That was, for me, the thing that when you put in a particular view; when you say, "Here's how you can eat these foods," I think we all benefit. It isn't black diabetic info with just black people. It's black diabetic info because it's black information that's culturally competent for anybody to absorb. Scott Johnson: That's very powerful. I think one of my favorite things about the online and peer-support community is that... We create what we need, right? Just like you, you're looking for information that fits your story, that resonates for you, and you couldn't find it. You decided, "Well, okay. I need to create this. I want different search results that come up when I search for this." That has been an amazing... I think a revolution in what the peer-support community has done, and the online community has done over the past decade plus. It's going to only continue to get stronger and stronger because what's happening from that is people are seeing you and others like you being brave enough to tell your stories. They say, "You know what? I have a story to tell there as well. I can do it. I see others doing it, and I can add my voice to that song." The more voices in that song, the more beautiful the song becomes. It just grows and grows and grows, so- Phyllisa Deroze: We become a choir. Scott Johnson: Yes. I love that. I love that. Thank you for... For one, just tolerating not having others... Tolerating surviving diabetes and that experience coming out of the diagnosis, and deciding that you deserve better. You do. You definitely do, and everybody does. No one should have to go through that and deciding to not sit back and just to take that experience and make a positive change. I think that's remarkable. It takes a lot of work, and there's a significant amount of that work that goes unseen and un-thanked. Phyllisa Deroze: That's true. Scott Johnson: Thank you for doing all that. Can we talk a little bit about the stigma of type 2 Diabetes, and... Well, yeah. Let me just stop there. The stigma of type 2 Diabetes. Phyllisa Deroze: I could say it's a heavy weight. It's one that I was not really ready to fight for a while. All the blogging that I talked about, even finding black diabetic info, I did that under an alias. For six years, I blogged under an alias because of type 2 diabetes stigma. I was afraid of what people would say, what people would think. Because, again, when it comes to type 2 diabetes, the first thing is you brought it upon yourself. You caused it. You didn't eat the right food, you didn't exercise enough, you were lazy; you, you, you, you blame yourself. I had to get to the point where I had to say and mean it, "I didn't cause my type 2 diabetes." Say it to the point where I mean it so much that when I say it to others, they understand. I didn't eat more doughnuts than anybody else. I didn't eat more candy at Halloween than anybody else. I didn't take more days off at the gym than anybody else. That, particularly, even bothers me with some of these... Brochures or information about diabetes when they say things like, "Your risk factor for type 2 diabetes is being African-American." Well, that's not a risk factor. Living in a food desert is a risk factor. Scott Johnson: Sure. Phyllisa Deroze: Living in a place where, like right now, when I leave this library and I go home; I am going to pass two fast-food restaurants and two strip clubs before I can even get to a grocery store. That's a risk factor. What I want to do, a part of my efforts is to really eradicate type 2 diabetes stigma, to really challenge people who continue to perpetuate diabetes stigma, to really think about what that means. I can say that this is probably one of the most challenging efforts that I've done. And I have to say this. Being a person with type 2 diabetes in the diabetes online spaces is lonely, and I wish there were more people with type 2 diabetes out there. I am beyond thankful for everyone who has type 1 diabetes that makes me feel comfortable as a person with type 2 in the space. I just cannot thank you enough. I can't list everybody, but I am so thankful because sometimes I just feel defeated when I see some of the same stigma comments about type 2, coming from people with type 1. It makes me feel like... God. I thought we were all in this diabetes pool together. I thought we were all in the fight, and so it's when I cling to those type 1 who are like, no. We're all fighting this stigma together. I just kind of want to give a special shout-out to those people that do that, because I realize as a person with type 2 that sometimes, even the broad diabetes space isn't a safe space to fight type 2 diabetes stigma, although it should be. I fight against that too. I challenge people because I think when people say these things like, "diabetes runs in your family, or I don't have that kind of diabetes," I comment, "I don't have that kind either. What kind is that?" I don't have that kind either, in fact, I don't know anybody with that kind of diabetes. I don't know anyone who goes out and causes their diabetes. Scott Johnson: Right. Phyllisa Deroze: It really hurts when you're diagnosed with type 2 diabetes, and one of the first things that you do is think, "How did I bring this upon myself?" I think if a lot of people knew that, especially people with type 1 to know that your sister or brother is having that thought, a thought that maybe you didn't have; a thought that maybe you did, but you didn't have it long because people said, "Oh no, it's something in the environment that caused it." But something in the environment caused my diabetes too. Scott Johnson: Yeah. Yeah, there's so much that is misunderstood, or yet to be learned or discovered about diabetes, all types of diabetes. The way that I look at it is I have so much to learn from others living with diabetes. Everything that you learn about better managing your diabetes, those are all things that I can apply to my diabetes and help me learn better too, to live better with my diabetes, and better management with blood sugars too. Phyllisa Deroze: We're family! We're like we're family. You know? Scott Johnson: Stronger together, right? Phyllisa Deroze: Yeah! Scott Johnson: Yeah. I'm so glad you're out there, and you can count on me and those around me to lift you up and make your voice stronger, and... Yeah, I would love to see more people with all different kinds and types of diabetes out there telling their stories. I'm a big advocate of the power of story, and the more people out there saying... As you challenge people, what kind of diabetes is that? That's one person at a time, it's going to help change the story. Phyllisa Deroze: Yeah. I agree. We're all going to be affected by it. We're going to know someone who is affected by it, and I just think between type 2, type 1, LADA, gestational; we are all in this fight together. I'm very thankful for this platform, and I just want to say this too: I am so thankful that with mySugr, no one else is going to be discharged from the hospital and faced with that high price tag. You know? I'm just very, very, very thankful that since I was diagnosed, access to test strips have become affordable because diabetes management is... It's a line on your monthly budget. It's a thick line. Scott Johnson: Yeah. Thank you. Thank you for saying that. I appreciate it. We didn't talk about that before, so that wasn't planned. It's much appreciated, so thank you for that. Phyllisa Deroze: No, we didn't. But I just have to say when I think about the financial burden of diabetes, that's a way we can unite. There are so many ways of uniting that that's what I see. I see that we can unite around this, and we can unite around this and that, and we're much stronger together. Scott Johnson: Yeah, absolutely. Absolutely. Yeah, I mean, I agree with you. There are so many different ways we can unite and come together. We will continue to explore all those different ways and do as much as possible together. What's next for you? Of course, I don't want to put you on the spot. If nothing is coming next, that's perfectly fine. You are doing plenty by just being you and telling your story, and sharing yourself with the world. Phyllisa Deroze: Well, let's see. I have a couple of things that are coming up. One is a video series that I'm going to do that is totally related to living with type 2 diabetes. I'm looking forward to IDF this year in South Korea, and then I have a huge project that's coming up that is not diabetes-related, but I talk about living with diabetes. I have my daughter, who will be four this summer, and I experienced birth trauma with her. I am writing, currently, a book of poetry about surviving birth trauma. Scott Johnson: Wow. Wow. Phyllisa Deroze: That's my summer project. Of course, I talk about living with diabetes, but the main quest of that is exposing birth trauma. A lot of people don't know what that is. If a woman experiences birth trauma, most of the information is about postpartum depression, not about birth trauma or postpartum PTSD. So I'm hoping to bring awareness to those issues. Scott Johnson: Wow, that sounds amazing. Amazing. I wish you the best of luck and fun and success, and also, I imagine that you're much like me in that... Working through projects like that and writing is much a form of therapy. I wish you strong growth and healing through that as well. Phyllisa Deroze: Thank you very much. Scott Johnson: We will put all of your social channels and blog sites and everything in the show notes and description on the screen and everything. Is there anything that I haven't asked about that you want to talk a little bit more about? Phyllisa Deroze: I can say that, fortunately, last year, I started being invited to talk to pharmaceutical companies and healthcare providers, and I really enjoy this. I think that learning and having the opportunity to tap into those spaces are very important. You and I can talk about the tragedy of when I was discharged with a glucometer and strips, but a healthcare provider needs to know that. Scott Johnson: Right. Phyllisa Deroze: They need to know that this is a kit that you need to have, right? When I get the information about, "Now that you have diabetes," and it's not emotionally helpful for me; well, a pharmaceutical company needs to know that, so then they can change that. I can say last year, I had an opportunity to be in those settings a couple of times. I really thrived there, and I hope that in the future, I have many more of those kinds of opportunities. Scott Johnson: I have no doubt that they will continue to come for you, and also, along those lines, thank you for doing the work with those involved. I believe you enjoy traveling, but at some point, like work travel also becomes work, and time away from your family and your job, and everything else that you do. Don't let it beat you up too much. You make sure you're being well taken care of in that regard too, because it is also work. Phyllisa Deroze: Thank you very much for that tip. Yeah, it is. And it's a sacrifice for the family. Scott Johnson: Mm-hmm (affirmative). Mm-hmm (affirmative), yeah. But anyone out there hosting events like that would be privileged to have you in the room. You definitely deserve a seat at the table. Phyllisa Deroze: Thank you, Scott. This has been great. We have to do it again. Scott Johnson: I would love to. I'm sure the viewers would love to hear more from you at any time. You have an open invitation. I'm going to put a reminder on the calendar; every few months, circle back with... In my mind, you are one of your aliases. You are Doc P, in my mind, right? I'm going to put that in my calendar. Just circle back with you and check in, get you back on the show so you can fill us in on all the great things that you're doing. Phyllisa Deroze: I love that. Scott Johnson: Yeah. That sounds good. Well, thank you again for coming on and we'll catch up with you soon. Phyllisa Deroze: Okay. Bye. Scott Johnson: All right. There you have it. What did you think about that chat with Phyllisa? Let us know. For me, that was one of my favorite discussions. I have been waiting to catch up with Phyllisa for many, many years, and she is just a tremendous human being doing tremendous work for all of us living with diabetes. We are so, so lucky to have her out there doing all that for us. Again, Phyllisa, thank you for coming on and sharing yourself with us, and with the mySugr audience. As a special thanks to all of you watching, I have some fun gifts to give away, a mySugr tote bag. I have a few stickers to giveaway. Let's see if I can get those in the camera, and then I also found another copy of Adam Brown's Bright Spots & Landmines. Look at that, you guys. It's an autographed copy. I would love to give those away to you guys. Also, I'll see if I can track down another Pop Socket, a mySugr Pop Socket to stick on the back of your smartphone. To enter, leave a comment below, and before next week's show, I'll randomly pick a lucky winner or two and announce it during the start of next week's broadcast. And, guess what? Right before the show, I got an update video from the Miles of Portraits team, Erik and Annalisa. Let's take a quick look at that. Erik: Good morning, everyone. I am Erik Douds. Annalisa: And I am Annalisa, and we're to give you an update on Miles of Portraits. For those of you don't know, Miles of Portraits is a magazine and film that documents the stories about the people we meet on our bike travels. Erik: And we are here in Globe, Arizona; which required a massive, massive climb up and over this huge mountain ridge to actually get into. I think it was 5,000 feet of climbing, and it was insanely windy at the top. In the future, you might see some photos of me inside of a sleeping bag, because when I reached the top, I called in and took a little nap there. But as kind of wider view, we've also made a bigger decision, since right now, we're going from Los Angeles up to Santa Fe. When we were in Tucson, we made the decision to go a diagonal route up to Albuquerque. We're mainly following Route 77 right now if you want to get out your maps and check it out. That's kind of what we're snaking up towards. We'll be climbing up elevation until we hit Albuquerque. Annalisa: And people always ask us, "How do you find places to sleep?" A few days ago, we actually just rolled into this First Baptist Church because we know from the past that we were able to sleep there. We were just lounging outside the church, and the Sunday school teacher actually drove up in his car, and he eventually ended up letting us sleep in the church, which was great because it just had everything that we needed. It had a carpet that we could lay our sleeping bags on, it had a shower and a kitchen. We had it all to ourselves. It's amazing, the places that we're able to sleep on this trip. Erik: It's pretty incredible because he was with his 94-year-old father. Who we were talking to initially was Manny Jr, but his father is a great-great-grandfather if you can figure that out. That's five generations all in one town, and they had both worked in the mining industry. The grandfather had... The father had a little bit of loss of hearing, and he was saying that's because he was working in the mines so long. They didn't have all the safety standards that we have today. He used to roll up cotton balls and put them in his ears to help with all the drilling and stuff like that. It was pretty remarkable to hear that story, but then also realize that that town, Mammoth, the industry that kept it alive was mining, which has disappeared. You kind of see those remnants of rural America. Then Annalisa and I have started to do is write out weekly health goals. This is... We're both type 1 diabetics, but I also think anyone can do this. This is to do things like juice or tea before 11:00 AM, or eat more fruit. We stopped by Trader Joe's and picked up a three-pound bag or a five-pound bag of apples. I just realized I've been eating so many protein bars and processed food. I just wanted to have more fruits and vegetables be my snacks of choice, rather than a bunch of processed foods, just because it helps your blood sugars, but also obviously helps your overall health. Is there anything you want to share from your list? Annalisa: Sure, I'm trying to eat less dairy, and I think Erik is too. Just to limit it to maybe only lunchtime, because it really messes with our blood sugars overnight. Definitely try to stretch every day and do yoga because our bodies feel like jelly after going up all these mountain passes. It's important to give your body that rest and that stretching. No phone in the bathroom, paper instead of phone, and just drinking more water, staying hydrated. That's also great for the blood sugar. Erik: Yeah, so let us know what health goals you might set for a week. I think weekly challenges are really good, because they're really doable. It doesn't feel like you're off on this massive journey. Take a moment today or each week and just write them down, and I think also sharing them with another person is super helpful. Annalisa: Yeah. Some exciting news on some press coverage; Sarah Falconer has been helping us get the word out about Miles of Portraits and our events, and she was able to secure us to interviews on the local news in Tucson, and then we also were on the REI blog, on the official blog. If you go to REI.com/blog, you can find our story there. It talks about what it's like to bike 2,000 miles with type 1 diabetes, and it's pretty cool because the interviewer, Olivia, she really did a great job reporting on our story. She even called up some members of our trail family and our trail parents to get their side of the story. Give that a read if you can. Erik: Yeah, and it's also insane to be on REI. I think on the broader scope of things, it's like, "Wow. We're on an REI blog for being professional athletes." Annalisa: It's pretty crazy. Erik: I've already kind of talked about the next steps, but if you guys go on Milesofportraits.com, you'll see... If you enter your email, you can get a free download of the amazing magazines that Annalisa has made. You can catch the film series of Alaska, which we talk about as we go around to the REIs, and you also can get the events. Our next main events are in Santa Fe on- Annalisa: May 4th? Erik: Nice, and then Albuquerque- Annalisa: On May 11th. Erik: If you're in town, if you know a friend in town; tell them to check out Milesofportraits.com, and you will connect with us, and thanks for tuning in. Annalisa: Yeah, thanks for tuning in. Erik: Anything else? Annalisa: I think that's it. Erik: Boom! All right. Annalisa: Boom! Bam! Erik: Oh, also, I got a new helmet. Annalisa: Oh yeah. His helmet is not cracked anymore. Great. Erik: That was awesome. Annalisa: Yeah. Scott Johnson: All right. I love that. I also think maybe I could do some health goals too? Maybe some water and... I'll think about a little more as I enjoy the rest of this Diet Coke after this show is over. Thank you, Miles of Portraits team, Erik and Annalisa. I really... I love getting those updates. I hope you do too. It's so fun for me to be able to follow along with their journey and get a mySugr exclusive update in their journey. It's so fun. I hope you're enjoying that too. Once again, today's episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support, and more all for just $49 per month. Learn more at mysugr.com/facebooklive, and be sure to tune in next week where I catch up with Christopher Snider, my good friend from Tidepool, a non-profit organization dedicated to making diabetes data more accessible. He'll bring us up-to-date on some exciting developments they've been working on over there lately. Thank you so much for joining today. Please like this video, share it with your friends. Have another amazing day. Drink more water or Diet Coke. Let me give it one last... That's delightful. I love it. All right, we'll see you next week, everyone. Bye-bye.

Scott Johnson

Almost famous for his addiction to Diet Coke, Scott has lived well with diabetes for almost forty years and is currently the Patient Success Manager, USA for mySugr. He's an active pioneer in the diabetes social media space and along with his work at mySugr, he manages his award-winning blog, scottsdiabetes.com when time allows.