Doing Well with Diabetes: Kerry Murphy

[00:00:00] Rob Howe: Welcome to Season 2 of Doing Well with Diabetes, a collaboration between the International Diabetes Federation and the Diabetics Doing Things podcast. I'm your host, Rob Howe. Doing Well with Diabetes is a series interviewing people living with diabetes from around the globe to help inspire the next generation of people with diabetes globally and learn what it takes to live well with diabetes from their peers. This year's focus is on global health and well-being, so we are interviewing a series of guests from each of the following areas across the globe. South and Central America, Africa, India, and the United States. Doing Well with Diabetes is part of the Kids and Diabetes in Schools program from the International Diabetes Federation and is supported by Sanofi and ISPAD. To learn more about the Kids program, visit kids.idf.org. And to hear more from Diabetics Doing Things, visit diabeticsdoingthings.com slash subscribe. Now give it up for our next guest on Doing Well with Diabetes. Welcome to episode four of Doing Well with Diabetes season two as part of our global health and well-being series. My guest for this episode is Kerry Murphy, wife and mother to T1Ds and founder of Follow T1Ds, an organization advocating for school nurses to follow T1D students on CGM, follow parent input, and follow federal law. We talk about her journey being onboarded to diabetes and how her lived experience turned her into an advocate for others. This episode takes place in the United States and is focused on federal policy that is only really applicable in the United States. But this is an incredible episode, and I encourage you all to listen to it because it inspires an advocacy journey that Kerry could not have prepared for, but has totally embraced and has helped hundreds of people as a result. Please enjoy this interview with Kerry Murphy. And if you want more information on follow T1Ds, visit followt1ds.org. Kerry, thank you for being with us today.

[00:01:49] Kerry Murphy: Thank you for having me.

[00:01:50] Rob Howe: We were actually just talking before we hit record, and that was actually one of the reasons why I wanted to hit record quickly. We were talking about something that's all too familiar for people with type 1 diabetes is silencing alerts or not silencing alerts, depending on which parent and caregiver is going to be in the hot seat, so to speak. So with that, like, why don't you give us your background to T1D and your connection to type 1?

[00:02:13] Kerry Murphy: Sure. So as I've mentioned, it's a long history. I first learned what T1D was from my sister-in-law. When I met my husband, we went to his house and that's when I met his sister. She was diagnosed at 12. She was about 14 at the time. And they had like a pen syringe on the table, which I thought was just a syringe full of blood, which confused me. But not too much because I didn't know a lot about syringes. I was like, why is there blood in a syringe on the table? And they were all laughing at me because it's a pen from the endo's office. And that just goes to show you how little, like, I didn't even know how to use a syringe. I was, you know, 20 years old and I didn't even understand that. So I learned a little bit from her about, you know, what a pump was, although I really had a hard time understanding how it stuck to her body and how the medicine was in it. And how did it get in there? What was it doing? She showed it to me multiple times and I was like, I just don't, I just don't understand. And about 15 years later, about 10 years into my marriage, my husband was diagnosed, misdiagnosed type 2. And then about a year later, properly diagnosed with type 1. He was very sick for that year, emaciated. We told doctors it was type 1, his sister was type 1, and they kept saying, there's no link to, you know, type 1 being genetic, it's type 2. And we were like, that's just strange. Because he didn't really meet any of, like, the, you know, typical type 2 symptomology that people look at. And then two years after that, my sister-in-law's daughter was diagnosed at two. She's 14 now. And then a couple years later, our last child and only daughter was diagnosed at three years old. And now she's 11. So that also my middle son, who's 19, has three positive antibodies. And my oldest, who's nearly 22, has tested positive for one antibody. But some tests show yes, some tests show no. So he's further behind. Hopefully he never gets it. But the middle one, we're definitely keeping an eye on. He's seeing an endo. So I, you know, come at this from understanding all ages and stages.

[00:04:11] Rob Howe: Definitely. Okay, I have like, even if I didn't have questions prepared for this, I have so many more to dig into for the listeners. Because as a mom, as a caregiver, you've got diabetes around you, not just in your immediate family, but in your extended family. I want to go back to like your first impression of type 1 diabetes because we all start at the same place with like not knowing anything. So I want to go back to that. But regarding the screening, so your husband has type 1, has dealt with challenging diagnosis circumstances, misdiagnosed, doctors not responding to his, you know, pleading that he has type 1 and giving that family history. Then your daughter is diagnosed and you have two other children and you go through that screening process. Like, what was that discussion like for you and your husband to have them participate in the antibody screen?

[00:04:58] Kerry Murphy: We didn't discuss that. We went to the endo office after our daughter was diagnosed. And, you know, I think they enrolled me in a research program for caregiver mental distress at diagnosis. I was just like, sure, we're newly diagnosed. I like psychology. I'm happy to help out. But that research program actually really frustrated me in so many ways. I didn't really even understand at the time how and why they were doing that research. And I think that it could have been so much better than it was. So I was, you know, constantly giving them feedback on like, well, you know, on that part of it. But the, you know, at each appointment, they would tell us something new we could do to help advance prevention, delay, cure. And one of those things was, you know, joining TrialNet and having our other children screened for antibodies. And of course, I mean, we didn't discuss it because it wasn't a discussion. I was like, you know, how fast can I get the test here? We were so lucky to diagnose our daughter ourself after three failed visits to the doctor and multiple rounds of antibiotics. And I just remember her looking so yellow almost like her face was just yellow and sallow. And she was just happy and smiling and loving and not sick, but like so sick at the same time. And it still took several weeks to months before she started peeing, like all through the night that we thought to test her blood sugar. So we were able to avoid DKA just based on that. But knowing that there was a test where you could see what I knew was happening to my husband since I met him. He's always had a weird relationship with food. We would always argue more after date nights and eating, you know, like the Thunder Down Under at Outback. And we used to work at Outback together and the bread and the appetizers and the wine and, you know, just so much caloric intake in your 20s. I think his blood sugar went through multiple waves. Like I would look at him sometimes and be like, you have like an unnatural craving for sugary food and food. It's almost as if it just, you could see that it wasn't getting into his body, but I had no idea what was happening. So to be able to have my sons, you know, avoid the distress my husband went through for a very long time and avoid DKA, it just wasn't even a discussion.

[00:07:21] Rob Howe: Yeah. Yeah. The reason I ask, I think a lot of folks who, before they become parents and they have type 1, either one or both parents, they have that sort of like, you know, projection discussion of like, well, do we want to screen our children? And that's everyone's decision to do on their own. But thank you for giving that background. I love the idea that the thunder from down under was an indicator for your husband's diabetes. Real outback heads out there like me, that's a really fun note. That's good.

[00:07:49] Kerry Murphy: No, it just, I think what it was doing was it was sending his blood sugar up so high that he couldn't produce enough insulin. And so I think obviously that didn't cause his diabetes, but it definitely he was having symptoms of high blood sugar that were impacting our relationship, you know, during that whole entire time.

[00:08:09] Rob Howe: And yeah, I am raising my hand. I'm very guilty of being cranky when my blood sugar is high. I mean, worse than low, honestly, I mean, from my experience, I know some people they get low and get, you know, very low and get like violent or angry. I haven't experienced that, luckily. But yeah, if my sugar pixels reading over 180 or 200, I'm not talking to my husband about anything. He knows that. That's my cutoff. It's like that T-shirt. It's like, I'm sorry for what I said, but my blood sugar was high for sure. Okay. I want to go, let's talk a little bit about follow T1Ds and talk about your advocacy journey. And I want to frame it around exactly what you said when you saw the syringe at your in-laws. And like, we all start at this baseline of almost no knowledge of type 1 diabetes when it comes into our life. So there is some sort of triggering event, whether it's ourselves or our significant other or our children or someone else in our life, friend, family who's diagnosed with diabetes, type 1 diabetes. That's typically the first time that you've had some sort of acute experience with it. And so everyone starts from the ground floor, no knowledge, basically. And so around the country, obviously, like parents are dealing with this every single day as 40,000 people are diagnosed with type 1 diabetes in the U.S. every year. So talk a little bit about where Follow T1Ds and, you know, you starting this organization to help advocate for and help parents and help, you know, children with diabetes in schools. Talk about how that came to be.

[00:09:38] Kerry Murphy: That's a very long answer. I want to speak first to what you just said. Everyone starts from that ground zero place. Well, I didn't, which is interesting. And it's an interesting it's an interesting thought you put in my head. First, you know, of course, I saw my sister-in-law and I was like, oh, what's that? Right. And that was pretty much it. She kind of, you know, went to the bathroom to give her shots. I didn't really see a lot of the management. When her daughter was diagnosed, however, too, I did experience it. I watched my sister-in-law, her sister, learn how to give shots, my brother-in-law, so they could help watch her. Their kids were a little bit older. Mine were younger. So they would watch her for the weekends and stuff. My mother-in-law obviously was familiar with type 1 diabetes to some extent, even though my sister-in-law was older when she was diagnosed. She did most of the care. But of course, my mother-in-law understood what was going on. And I watched from afar, terrified, and watched it all happen and understood to an extent what was happening. And I was like, I fortunately wasn't in a place with my niece where I had to be the provider of her, you know, giving her insulin. But it terrified me. And I didn't step up to the plate. I felt like I would kill her. I hate math. I hate doing things on time. diabetes challenges every one of my character flaws and more and that was the first time I got a hint of like of course I would do it if I was the only one of course I was willing to learn but I just didn't need to because we had so many other family members willing and able in there right so I just I didn't and I wasn't really left alone with her at that point so you know I feel horrible about that but I have so much empathy for the people that love and take care of our children especially the nurses, because they're trained in the medical field, but they're actually really not trained in diabetes. A four-hour training, that's nothing. So, I mean, anyone who's taking care of our children is, I understand how they feel. But when your child's diagnosed, don't get, you have to do it anyways. And I think that was a really sobering moment when I realized, oh my gosh, like I have to do this now. It was as hard as I thought it was when I saw everyone else doing it for my niece, but at least I had a forewarning. But I have a lot of empathy for people because of that experience. And I don't talk about that a lot because I'm not proud of it, obviously, but I think it's just also given me so much grace and patience for people who don't understand diabetes. And I always say like after the first year when it, of course, you know, you're distraught and upset, the diagnosis and not really thinking about other people at that time. I now say, you know, seven years later, good for you. Like, I'm going to tell you about diabetes. I hope you know nothing about it. I hope you don't know anyone with diabetes. I hope you don't have diabetes. I'm going to talk to you like you know nothing. And it's okay that you're stupid about diabetes. That's okay with me. But be willing to listen, right? So as far as Follow T1Ds, I think I just have a historical perspective of, you know, what school was like for my sister-in-law to some extent, managing it all on her own. The laws had just a couple of years before that started supporting students' diabetes going to school in the 90s. She did go to a private school, and so she probably had a little bit more assistance than the public school students did. But even then, she did most of the care on her own, and I saw what that did to her. It was a lot. It was a lot for a teenager. I look at where we are in diabetes care today when I took my daughter to kindergarten, and the nurses looked at me and basically told me they were going to do what they've always done because they figured out how to take care of diabetes in 1995. And they already know how to do it. And, you know, I'm holding a Dexcom, holding a pump, holding an iPort, which I was mini dosing in. I have a follow-up. I've got charts. I've got data. I've got this great A1C because of all this data. And they didn't want to use any of it. And I think that was the catalyst for me in understanding that I had a responsibility to hold people to a higher standard because we know now that the long-term complications, and we're still learning. I was just advocating with DPAC on Capitol Hill and spent time with a lot of adults who have hearing loss and amputations. And it's because of high blood sugars when they were younger. And we have an obligation to use the tools that have been around for 10 years. CGMs have been around for 10 years. It's, you know, incredible to me. So that seven years ago, that battle to get them to do what I knew my child needed was really hard because she had been diagnosed a year. It was emotional. I'm now leaving her in the hands of people who are saying, you know, you can do that at home, like what your doctor taught you to keep your kid alive, but we're not going to do it that way here. We're going to do it our own way. And it's just kind of like, you're not going to do what she needs to stay alive. Like, and I'm supposed to happily love the school nurse and give you my child and have her here all day. Like, what is this? So I have that experience. And then fast forward to, you know, two and a half years ago, you know, it is a very long story, but two and a half years ago, I found that two attorneys in Connecticut had worked with four families whose school were refusing to follow the CGM app, the follow app. And the Department of Justice in all four cases required the school district to do it for all of the T1Ds in their district in order to be compliant with the Americans with Disabilities Act. And for the first time reading, the interpretation of the federal government is that this is a reasonable accommodation for the medical safety of our children and that when it's requested, it should be done. You don't get that a lot. From the education I've been given about the ADA law, it's vague for a reason because it's not supposed to be limiting. It's supposed to be reasonable. And to have this interpretation saying this is how you apply the ADA law to students with disabilities or students with diabetes in school was like golden. And it was already several years old at the time. That was 2023. The letters were printed in 2020. And due to COVID, they just didn't circulate. And so my mission was to circulate these around the country because what applies to one state applies to all states under federal law. What we quickly found out is that even districts in Connecticut were saying that applied to that school district or, yeah, that doesn't apply to Virginia. That was a Connecticut school district. And I'm like, do you have an attorney that could maybe explain federal law to you? I don't know. So those two attorneys in Connecticut have been wonderful pro bono guiding parents who are having the struggle in schools. If I find a parent that, you know, wants to file a complaint, you know, pass them off to the attorneys. That's only one component of like how this started. But truly what Follow T1Ds is, is it's three things. If you look on our website, we've got three circles. Follow T1D, CGMs, follow parent input and follow federal law. And the following T1D CGMs is like, if you think of a deck of cards, it's like the first card showing is follow T1D CGMs. But we know that there's 51 other cards underneath of it where there are barriers to care. And follow T1D CGMs was just the first kind of campaign that we were working to bring awareness to. And of course, two and a half years into this, you know, the list is long. But, you know, my team and I, our goal is to, while we have the complaint process part component of, you know, kind of being the middleman to that process, our real goal has always been to advocate and educate. Don't want to, like, imagine me being forced by my sister-in-law to learn how to inject my two-year-old, niece, who's running around the house, which I did ultimately have to do with my daughter, you know, forcing me to do that. I don't want to force anyone to do anything. But especially if you're a school nurse, you have gone through your education to provide medical care and you're going to do it in the school environment. You should be competent and prepared to take care of our kids with T1D. And I want to empower and educate and advocate for them to have the confidence they need to do it well. That takes collaboration. It takes relationships. And, you know, what I've seen the last two and a half years is that it's impossible for parents to do that in their emotional situation with their child. And so it just doesn't get done. And so I felt knowing this, that I had this obligation to pay it forward. I built Loop for my daughter and my husband over COVID. And that community is so inspiring, makes me emotional. I offered to pay so many people for the help they gave me. No one will take money for obvious reasons, but also because everyone's paying it forward. And I said, you know, the minute I have a chance to make a difference for someone with diabetes, I'm going to do it. And so I feel like in some ways this is my calling of like my way to help the community. And I knew that because I had already gotten all the things my daughter needed six years ago, that I could advocate from a place that many parents just can't right now for multiple reasons. And so my team and I are building relationships with parents and we're kind of fingering out above the heads of the people that we're struggling with and trying to figure out who's telling them this. What's the root problem of building better relationships with the people that care for our kids and making great progress in that, I have to say? Long answer.

[00:19:11] Rob Howe: No, and I'm glad that you went into the detail because it is so complicated. And I think for someone listening to this as a parent or caregiver, like hopefully they see their own experience and frustrations in the work that you're doing and knowing. I've had that thought myself or I wish it would have been one way or the other. I want to go to the first circle, the rung of follow T1D CGMs, which you called the first card, which I think is really important because I'm doing a presentation. Tomorrow is World Diabetes Day at time of recording. And my audience is eclectic is what the venue has described them as. So I know that they aren't a like diabetes. Their knowledge of diabetes is very low. And so I'm pulling some statistics. And so you were talking about CGMs and like the lack of CGMs across the board or lack of children using them in schools or school nurses that are following the apps or what have you. And looking at some of the data for this presentation, only 31% of patients with diabetes in the U.S. are on an automated insulin delivery system, which is the new ADA standard of care. And so you think like there's not a delta of like 50 percent. There's a lot of overlap between those AID folks and the people who are wearing CGMs in general. And so there's just a majority of people in the United States living without consistent access to their their glucose. And that extends down to kids and then in schools. And I don't know, it's just something that is, you know, you just spoke with so much passion about being frustrated by the idea that there's just not a there's no consistency there and there's no standard. Even though we have the standard of care, it doesn't like make it way its way down to like school nurses in small county high schools or middle schools throughout the country.

[00:20:57] Kerry Murphy: I'm in the process of collecting data. I have data on my school district. It's one of the largest in Virginia and Prince William County. And I didn't want to misquote it, but I'm going to have to because I can't find it. But our number of CGM use in the district was like in the 90s of people using CGMs. Pumps were also very high. I'm not sure that, you know, mixing the school-aged kids in with a larger population of people, I think that AID use is much higher than that in children because their parents are more willing to try the new things, whereas a lot of the adults are kind of set in their ways, right?

[00:21:36] Rob Howe: Set in their ways.

[00:21:37] Kerry Murphy: But, you know, there are very few kids that I'm aware of when I've talked to people that are not using CGMs. Pumps are less because some kids, you know, want to do pens or in pen or they're newly diagnosed and they're not on a pump. So that number is also there. But I think that the technology, you know, on that first card was to follow the CGM using the follow app remotely from the student. We want the nurses to respond to audible alerts and then also check the numbers at specific times of the day that the parent and the doctor have written down, like before lunch, before dismissal, so that the kid doesn't need to come down to the nurse's office five or six times a day. And so they can intervene in emergencies. So like I said, the CGMs, they're 10 years old. I think the follow-up's eight years old, seven years old at this point. And it's still, it's just, in most cases where it's not happening, it's being refused. It's not just, we didn't know that exists. It's just outright being refused for perceived liability. So that's, you know, it's not so much of an equity. There is an equity issue with it. But the equity of like, it's not so much not being able to have a CGM or having access to a CGM that we're worried about. Having the access to a CGM and not being able to use it to its full capacity and not being able to use all of the things to make the CGM beneficial for your life and for your caretaking. But the equity issue, there is an equity issue where kids do have CGMs, but they might not have a cell phone. And then if they don't have a cell phone, they can't have the nurse remotely monitor. That could be an equity issue if there's a reason why they don't have a phone. But there are programs that will donate phones and devices. I'm always telling people to contact me if they're having trouble, and I'll help find you a device or set you up with somebody who could, you know, potentially give you one.

[00:23:21] Rob Howe: But yeah. Well, that brings up even a bigger point on the education and the advocacy side is, you know, the kids who are on CGM that need to have a phone at all times, you know, which is I can't imagine is getting it's definitely not getting easier as as phones continue to be a bigger part of our lives. And, you know, like you mentioned on our first call together, you know, if your nurse refuses to follow your CGM account, like that's technically illegal. So like, you know, you're right. Like you're you're being refused care that you are, you know, accommodated under the Americans with Disabilities Act. And so like you had mentioned earlier, and this is something that I really liked, that like diabetes goes against all of your character flaws or like all of your character flaws like flow into diabetes. And like, you know, having hard conversations, I don't want to say it's a character flaw, but it's like a thing that's outside the ordinary, like day to day for most people. Diabetes presents you with all of these different ways to have uncomfortable conversations where you're advocating for your health or the health of your child with people who are professionals in one way or another, whether they had four hours of diabetes education or or or more or less. And so like for you, like as you're working with your families, like what what advice do you have? Like when you're running into even if it's not like hardcore discrimination or if it's just resistance and you have to have hard conversations with a teacher or a nurse or a superintendent or a principal or like anybody who is in a authority role where your child is around or even sports coaches is kind of like my specialty. But like what what advice do you have for people who are running into those scenarios?

[00:24:56] Kerry Murphy: I have a list of things. I think the most important advice that I give is you have to feel your feelings. Don't push them away. Don't let the gaslighters let you gaslight yourself. What you're feeling is right. Honestly, I don't think I've spoken to one parent whose feeling was wrong. And that includes a parent who's got a newly diagnosed kid and knows nothing about diabetes and they feel like they're going to kill their child every time they give them insulin. They're just around their kid all the time. They're so worried something's going to happen. They're even right because they have no idea what they're doing. And they're dosing insulin and they could kill their child. And so to the people who understand diabetes or the school nurses who have taken care of 10 type ones for the last 15 years in high school, they disregard the fact that this parent really, truly does not know what they're doing. And they are allowed to feel this fear. And anyone who is, you know, especially the school nurses and the endos should have empathy for that fear and let them have it and let them work through it because that's how you kind of get to the other side. And I just really hate it when people are telling me, oh, it's not going to be like this forever. It's fine. He'll be fine. He'll be fine. Don't tell us that. Let the parent feel what they need to feel, their right to feel that way. And they need to build the confidence. And we need to give them the guardrails to feel that confidence. And even if that means the school is to work a little harder for the first couple years of diagnosis and they do more for this kid than they did for the kid who had had it for eight years when they first came to their school, it needs to be that way. So I feel like, you know, my first advice is vent, feel all the feelings, acknowledge your feelings, your right to feel those feelings. And I think after that, you have to average your feelings, you start kind of averaging them together, and kind of putting them in little groups, like what are the main concerns. And I think just the way my brain works, I know not everybody's brain works this way, but that's kind of my mental process is like, I get mad, I get enraged, and then I start to, you know, get composed and I start to kind of organize it. And then I immediately put myself in the shoes of the opposition. That's really the critical thing that you have to do is you have to put yourself in the shoes of the opposition. Sometimes that takes me days. Sometimes it takes me a week working on legislation. Sometimes it takes me nine days to deal with all the frustration and then be like, allow the kind of critical thinking to kind of to come in. I think once you can put yourself in the shoes of the opposition, you can start listing out what are their refusals? What are their oppositions? What are their, you know, their problems? And then start to address them one by one. And then, as I mentioned earlier, it's never just the person you're at odds with, right, in the advocacy, whether it's the principal or the school nurse or the school district nurse. There's someone above that person. And I think one of the things I love to tell parents, actually, I parent this way. It's probably horrible. People are going to get mad at me for saying this. But I always tell my children, like, you're not special. You're special to me. But you are not special in this world. Meaning, not that special, but everybody. There's somebody somewhere that's gone through what you've gone through. You're not the only person in this world that has struggled these things and has felt this way. Nobody is thinking about you.

[00:28:23] Rob Howe: Right.

[00:28:24] Kerry Murphy: And like you have to like, you know, just to get out of the out of the victim, you know, mindset of it. And I think I like to tell parents like you're not the first parent that has felt gaslighted by your school district nurse. That's not supposed to make them feel better, by the way. That doesn't help. It doesn't make it right. But you're definitely not the first. But like let it let let a statement like that fast track you to putting yourself in the shoes of the opposition faster. Because, you know, we sometimes just want to like stay and ruminate over what we're going through or think it's worse for me like than it was for that person. And that's why I can feel this bad for this long and be this mad at people like that thinking it's not productive. So I try to just say, look, we've been through this and these are your feelings are right. But like you have to really compartmentalize it at this point because we're talking about the livelihood of your child. So you can't stay there. You have to address what are the concerns of those people who are above them? Is this coming from a state law? Is this coming from a district policy? Is this coming from, you know, a district nurse who's been there for 30 years who helped create the first standard of care of diabetes that doesn't want to change? And then, you know, what do we do to solve that? But you know what? We're going to lose parents at every step of the way because we have parents going through breast cancer treatment. We have parents who are pregnant. We have parents who have infants. We have parents who have six kids. We have parents who work full time. we have single parents, right? Not everyone has the time and energy to get through all these steps of like, how do you become an advocate? And again, that's why I feel kind of compelled to do the work that I'm doing because I do have the time. I'm making the time, not without sacrifice and familial sacrifice and personal sacrifice and mental sacrifice, but because I know that not every parent can get to that advocacy point and they shouldn't have to. We shouldn't all be, like all All parents of type 1s shouldn't be working as hard as I'm working right now. I want there to be a better working diagram for how this should be happening so parents don't have to do all those steps, honestly.

[00:30:31] Rob Howe: Well, and it's resource allocation, right? Like you talked about it, like just energy, just having the time and attention to focus on helping your kid navigate their diabetes in school. And like you said, you shouldn't have to. There should be a framework that is that, you know, everybody's able to follow. It's interesting. You were talking earlier about, you know, a school nurse that's dealt with a kid for 15 years that went through her entire like high school experience. And, you know, she had great experience. But then I also think, well, what if that kid was me and I never had any issues at all? And I follow instructions and I do exactly as I'm told. And I'm Mr. You know, all America goody two shoes. And then the next kid just doesn't have that ability or like maybe has a learning difference or just is not as communicative or is really struggling with one thing or another. It's like I was a terrible example. And that was like that experience with me and that school nurse over that time period is almost like not relevant at all to the next kid. And that is, I think, you know, diabetes is a thief for a lot of reasons. Like it it steals time, it steals money, it steals energy. but it also steals invalidates your experience because it's so different from one person to

[00:31:39] Kerry Murphy: another yeah i hear like a there's a school nurse platform that i have access to that's public and i'll see nurses and they're saying things like i have a type 1 who's non-compliant and i do understand that's a medical term that medical people use like it's a term it's not so much psychological as it is just like not doing what they're supposed to do but every time i read that I'm like, oh, that's so frustrating. I have this kid, he's noncompliant or she's noncompliant or the parent's noncompliant. And I'm like, with what? What training did that parent have? What support does that parent have? What training do you have? What support do you have? What training does the kid have? What support do they have? Because none of them that are in there saying those types of things that blatantly are really explaining what they think the problem is. They just expect that kid to come to school and have their insulin on time and that their blood sugar should be at a certain range. And since that's not happening, they're noncompliant. And I'm like, well, you know, it's a lot more complicated than that. And I think that kind of attitude is exactly what you're talking about. If you've got a nurse who's like, well, I have this other kid. You're nothing like this other kid. You must be noncompliant. It doesn't work that way. Your home environment, your capacity to understand what's happening with you, your level of physical exertion or lack thereof, your diet, your access to food, your ability to sleep at home if you've got a dysfunctional family and you're being kept up at night till three o'clock in the morning and you're dealing with diabetes. Like, you don't know what else is playing into how their diabetes is being cared for. And that is why it is an individual disease. And I think that's a huge, huge component is at a minimum, we need to have standard of care. We also just need to have collaboration with the parents because the majority of us, especially when our doctor is telling the school that we are the experts in our kids' care, because, again, due to energy capacity, not every parent's doing the best job taking care of their kids. And you want to know what the answer to that is? Well, when the kids are at school, it's their nurse. It's their nurse that's taking the best care of that kid. Why doesn't that nurse want to do even better than they think they can do at taking care of a kid who doesn't have the support they need at home? That's a huge part of why I want to compel nurses to do better because not everyone has the capacity to advocate and not everyone has the capacity to learn how to take care of diabetes. And, you know, you put the growth mindset spin on it. You know, maybe that eight hours that they're with the school nurse is the only time that they're safe with their diabetes in their life. We know that's true for a lot of students, like probably more than I'm even aware of. But I hear it all the time. Not everyone's like you, Kerry. And I'm like, I was told that by a school nurse. And I looked at her and I said, that's exactly why I'm here. It's because I know not everybody's doing what I'm doing, but I'm here for their children. And I'm here for that parent who wishes they could and just doesn't understand it or doesn't have the time to understand it. And they're failing and they're depressed or they're, you know, mentally incapacitated. We don't know why they're not doing a good job, but that doesn't mean the kids should suffer. And so I'm not here saying, you know, I think that six years ago, that was kind of like in my district when I was advocating. Their impression of me was that I wanted them to be as good at taking care of diabetes as me and that all parents take care of diabetes like me. And I think, you know, here we are seven years later. That's very much not what I was trying to say back then. And it's still that I have knowledge about how things and I'm good at finding solutions to problems, especially in relationships and collaborating. I want people to listen. And I think, you know, that's really another another really important thing I try to focus on is like, how do you be somebody that people want to listen to? And when your kid's first diagnosed and you're forced to be a pancreas overnight and an endo and a nurse and a doctor, and then you find out, oh, my gosh, I have to be a lawyer, too. I don't know how to be a lawyer. I don't understand laws. Like there's just so, so much that you have to learn in order to take care of this disease. It's too much, honestly.

[00:35:43] Rob Howe: And I think it's difficult. And if you're not doing if you don't get it done right on the first try or you mess up like that's a really normal human thing. And it's totally OK. I think, you know, you mentioned lawyer. You got to also mention policy wonk. You got to also mention, you know, all these things that I never everything I've learned about this has been against my will. And we haven't even talked about health insurance, like all this stuff. Yeah, a case manager, a hospitalist. You know, there's just so much that goes into this that you you never you know, you wish you didn't have to manage. And unfortunately, we do. And I don't know, I'm grateful. I'm glad that, you know, through this like adverse situations and with people like yourself who are dedicating and making the sacrifices of energy and putting their advocacy into something that's making life better for the next generation and for the current people who and kids with diabetes in schools and their parents. I think it's really important. And I'm just glad that we were able to have this conversation because so much of health and well-being comes from your childhood and comes from your foundation. And so being able to live well with diabetes is something that we've got to make sure more and more people have access to. And I'm just grateful that we have people like you who are working behind the scenes and sometimes in the front lines and talking with our representatives about making sure that these accommodations are actually implemented across the board. So thank you for your advocacy and for all you do with follow T1.

[00:37:07] Kerry Murphy: Thank you so much. Thank you for what you do. I mean, giving a voice to all of us. It's great.

[00:37:13] Rob Howe: This is my favorite thing, right? But again, like I never would have discovered this if not for all of the negative things, you know? And so I think sometimes that's been my gift and it sounds like it's yours too, is being able to take this negative situation and have the capacity and like that interaction that you had with that nurse really resonated with me of like, Kerry, not everyone is like you. Like I hear that a lot.

[00:37:35] Kerry Murphy: Rob, like not everyone is like you. I know that's why I'm here to help them out because whatever,

[00:37:41] Rob Howe: whatever like little capacity I have left because I was able to do this, I can spread and apply to somebody else who doesn't have that or didn't have the people in their life. Because I think something I've been doing lately is framing this idea that I'm the best equipped person to be diagnosed with diabetes ever. I had amazing parents. I was an athlete right before I was diagnosed. I understood like my body and nutrition. I have the physical and emotional tools to deal with with everything. I'm employable. I have the financial skills to navigate living with diabetes in the U.S. Social skills like I have everything that you need. And it's still hard for me. There's

[00:38:17] Kerry Murphy: still days where I don't get it right. So the self-awareness in that to the self-awareness to even know those things and, you know, use that to help other people is huge. And I think like not, I can't take a phone call every day and help someone in their, you know, exact crisis situation. I mean, I have to an extent been doing that, but for the long term, like I don't want to have to help every single person through their current situation. That's not my long-term goal. My long-term goal would be to create a system where parent, you know, like I said earlier, where parents aren't having to work that hard. And it's similar, you know, to you, too. It's like you can't take a phone call from every student athlete, but you can do a podcast, talk about being a student athlete with diabetes and help them and help other people. I struggle with it, though. I do, because, I mean, people don't get excited about one on one phone calls or helping somebody get their insulin prescription filled or coming up with a $15 for their co-pay. That doesn't get like those aren't big, sexy problems that gain a lot of traction. You know, like people want to, yeah, a system. Ideally, it's right. But sometimes like for me, hey, we're going to do this podcast. It's going to do some great numbers. We're going to get awesome clips from you and I talking about this and people are going to feel really good about it. But that phone call that you're making later today or earlier this week and helping solve that person's problem is like so much more impactful to them, even though it's not like on a big scale, that person now has one less problem to deal with because of that individual advocacy. And so I don't know why I'm losing my voice, but like the if you're out there and you're like, man, I want to do I want to be on Capitol Hill. I want to make this big system. I do think that there's so much value in helping your neighbor or your friend or your friend's kid or just being an advocate to one person. And to me, that's what community is all about. And you're not going to get a big award for it and you're not going to get viral. You're not going to get a platinum YouTube plaque. But that person, you know, being able to go to to to live their life with a little less friction, it makes a huge difference. So I don't know. I just want to encourage people who are frustrated by the lack of progress or who are frustrated by helping somebody on the phone or another another thing to help somebody with diabetes and like feeling that's a never ending challenge. That's OK. Yeah, that's a those are all really great points. And I I think back to two years ago, I had a parent leave me a voicemail message crying about how the hour and a half phone call I had with her a couple months prior had given her the courage to go make change at her daughter's school and that it had happened and that it had changed everything. And just crying, thanking me. She's like, you don't have to call me back. I just wanted to, you know, the fact that she even left it on a message. So I had it on recorded, you know, and I played it again. I played it for my husband was like, oh, my gosh, those you know, there's nothing there's nothing like that. Right. And I, you know, I don't say that to brag. I don't I don't think I've ever spoken about that publicly. But that is when when parents give that to me, that update that that what I've the support I've given has created change in the situation is priceless to me. I absolutely, you know, wish I could take calls from every single parent every day. I mean, technically people are sending me emails every day and I am the only one in my organization who returns the emails from parents for privacy reasons. And so, you know, in effect, anyone can email me and they will get back, you know, from my website and I will get back to them. But, you know, in the long term, I don't want that many parents to need to talk to me, I guess is my bigger point, right? I want them to, you know, be able to.

[00:41:57] Rob Howe: Yeah, like hopefully there's not a need for this. Like it's so successful that down the road there's not a need for it.

[00:42:03] Kerry Murphy: Right, right.

[00:42:04] Rob Howe: Well, Kerry, as usual, it's great to talk to you. Thank you so much for all that you're doing for people with diabetes and for people today and people in the future. For those who are listening, it's followt1ds.org. Is that right? Okay, good. That's what I have written down. So followt1ds.org. We'll tag you in the show notes as well and when the episode goes live. But thank you for participating in a season two of Doing Well with Diabetes and really appreciate your time.

[00:42:27] Kerry Murphy: Thank you.