DKA In Real Life: a Caregiver’s Perspective with Leigh Fickling

[00:00:00] Rob Howe: Hello, listeners. What you are about to hear is a series that I've been working on for quite some time, and I've taken great care in every aspect of it because it's centered around a very serious topic, diabetic ketoacidosis, or DKA. But we know that by openly discussing serious topics, we can take some of the fear away from them, learn about them, and hopefully improve the way that we deal with them. Name it to tame it. So this is a five-part series where we discuss diabetic ketoacidosis. It is sponsored by Abbott. The views expressed should not be used for medical diagnosis or treatment or as a substitute for professional medical advice. Individual symptoms, situations, and circumstances may vary. The series is in our podcast feed as well as on YouTube, Instagram, and TikTok. I hope you find it informative, entertaining, and I hope it helps you understand a little bit more about DKA, its causes, and what you can do to make sure you're ready in a DKA situation. Enjoy. Leigh Fickling is a parent and caregiver of a person with T1D since 2013 when her daughter Ava was diagnosed at the age of three. She is the chief operating officer at Children with Diabetes and is a subject matter expert in the implementation of accommodations for people with diabetes in the classroom, workplace, and beyond. Leigh, welcome to the show. So, thank you so much for being part of Diabetics Doing Things. It's good to see you.

[00:01:25] Leigh Fickling: Hey, Rob. Good to see you, too.

[00:01:26] Rob Howe: I want to jump right in here because you are a diabetes mom with a very unique perspective. And I want us to cover a lot of that today. But where it all started for you is where we're going to get started today. So I want us to rewind back to 2013 when Ava was diagnosed with T1D. How familiar were you and your family with the signs of diabetes and elevated ketones and DKA?

[00:01:51] Leigh Fickling: Well, that's a great question. I feel like we're going pretty far back in the Wayback Machine. As a parent to teenage twins right now, I feel like I am in the thick of it, but we certainly were in the thick of it back when she was three. Ava was diagnosed with type 1 when she was three years old. Looking back on it now and certainly looking back sort of at our pictures that we had, she was diagnosed in January of 2013. I can now see, like from the pictures that I was taking back from Thanksgiving and Christmas of that year and even New Year's of that year, the signs were there. She was starting to become very lethargic and she, you know, she just wasn't as playful as she had been prior to that. But I think, you know, I had no experience with type 1 diabetes at all, had no idea, you know, what the signs or the symptoms were. You know, we were in the fall of that year of 2012. And, you know, it was the time of year when, you know, kids were sick. And, you know, she is a twin. They were in preschool. And so they were constantly coming home with something. And so I think that, you know, as we were sort of building up to that diagnosis, I probably had a million excuses of, well, she's got the crud. She's got the flu. It's the wintertime. and sort of not putting all of the pieces together, recognizing that this was something that, you know, was likely more serious than just a cold or the flu. So I think that that was sort of the very beginning in terms of understanding that maybe there was something more wrong than just her sort of being lethargic and down with, you know, with whatever crud she might have had at the time. But again, really had no experience whatsoever in terms of understanding type 1 diabetes, understanding DKA or anything like that prior to her being diagnosed.

[00:03:26] Rob Howe: Well, it can be challenging, right? Because as a parent of a young child, you kind of get used to going to school, going to daycare, coming back with the crud. Everybody's got it. And then it passes it on to everybody at home. And then that cycle sort of repeats. And I know that parents of young children listening to this episode probably will relate to that.

[00:03:44] Leigh Fickling: The things that really surprised me was that she was so thirsty. And so I just thought, well, this is just a thirsty kid. And, you know, I had a comparator with her twin brother in the house. You know, Davis was not thirsty. Ava was constantly thirsty. Ava was constantly going to the bathroom. Our bedrooms were upstairs in our house. My kitchen was downstairs. And they were still drinking sippy cups at that time because they had just turned three. And so I remember at night I was so exhausted from like this constant cycle of having to get up to give her these sippy cups of water that I bought multiple sippy cups and I would line them up on our banister at night. So then that way I wouldn't have to go downstairs to refresh the water. And there was even a point right before her diagnosis that I had gotten on Google and I had Googled kid-sized water coolers. And so in my mind, I thought, well, I found this really tiny, cute, pink Hello Kitty water cooler. So I'm going to get that for her room and then I'm going to teach this three-year-old how to wake up in the middle of the night and go pour herself her own cup of water. And as I really seriously got ready to add that to my Amazon cart, I thought something is not right. You know, it just doesn't seem right that you would be buying a three-year-old and their own personal water cooler for their room, right? Life skills. Let me teach you how to go refill your cup so mommy can sleep at night. And so at that point, once I got to the Hello Kitty water cooler phase, I told my husband, you know, I said, I think something might be wrong with Ava. And at that point was when I went and Googled what the symptoms were.

[00:05:07] Rob Howe: So that's what I was going to ask is, and we all know the sort of WebMD rabbit hole that you can find yourself in when you start to Google symptoms. but how familiar were you and your family or you and your husband with the signs of diabetes or elevated ketones or diabetic ketoacidosis? Right. Not at all. Absolutely not at all. And,

[00:05:25] Leigh Fickling: you know, I think, you know, again, she was so small. I wasn't even recognizing the fact that, you know, she had the frequent urination. She was thirsty all the time. She did sort of have the breath smell from having the ketones on her breath. She had lost seven pounds. When you're three years old, losing seven pounds is pretty significant when they're that little anyway. So, you know, once I got to Hello Kitty water cooler phase and then I went off to Google what those symptoms were, I said to my husband, I think she might have diabetes. And he said on that day, you know, if you think that this is what it is, then you need to get her to the doctor now. But now, you know, that I certainly know what the signs of DKA are and I know the signs of type 1 diabetes, she had all of them. You know, she was lethargic and it had gone on for months leading up to that. But because we were not familiar with it and because it was not something that, you know, we talked about, you know, at her well child check whenever we were at the doctor's office or, you know, even with what I thought was the flu or those colds, it just really did not come to our mind. We didn't know anybody that had type 1 diabetes and we'd never been around it before. We likely missed that diagnosis for months leading up, you know, to the point that we had that actual diagnosis of type 1 diabetes. And you mentioned, you know, going back and seeing holiday photos

[00:06:37] Rob Howe: and piecing the puzzle together from that point of view. But, you know, the symptoms of diabetes and DKA can be somewhat ambiguous. And like we've been talking about, young kids get sick fairly often, you get kind of used to it. And then you start to have that mirror for her of her brother and not thirsty, not drinking the same amount of water in the same environment. And it kind of starts to go down that path. So I guess for you and your husband, like how long was the time between, you know, how many nights were you getting up and down to refill those water bottles before you got to the Hello Kitty moment where you're Googling and thinking about how to teach her how to refill her own water so that you can sleep? Was it weeks? Was it days? What did that look like?

[00:07:19] Leigh Fickling: I think it was probably months. I mean, knowing what I know now and knowing what her A1C was at diagnosis, I think it had been going on for months. And, you know, again, I was sort of ignoring it. And I think the other part of it was is that, you know, without knowing the signs of type 1 diabetes, we continued on with our life as normal. She loves the chocolate milk box. She loved a juice box. She loved things, you know, that were sweet treats because they would have birthday parties at daycare and they would have all of those things. And so, you know, we were constantly sort of feeding her sugary foods. I was never making sort of the connection between once she eats this thing with sugar, now she needs, you know, now she's more thirsty. She's having to use the bathroom more because it was never something that was on my radar. And again, And comparing her to Davis, Davis was completely fine. And, you know, they were sort of going through life hand and literally hand in hand, side by side. And I just thought that she was thirsty. But when she was diagnosed, her blood sugar was over a thousand and her A1C was over 14 and she was in DKA at diagnosis. And so when I look back and I think about, you know, what does that number mean and sort of what does it look like at diagnosis? She likely had had it for three months or so. And I would, you know, looking back at the pictures and looking back at the way that our life was right before that diagnosis experience, I think it probably had gone on for about three months.

[00:08:38] Rob Howe: You mentioned that, you know, at the time you didn't have anyone else in your life with type 1 diabetes, didn't have any friends with children with type 1. Let's fast forward to today where that is definitely not the case. I said this at the beginning, but your perspective as a diabetes mom and COO of children with diabetes, I think you have a very unique perspective now as a caregiver and as a coworker of people with diabetes and a manager of people with diabetes. There are certain factors that cause even experienced folks with diabetes to sometimes lead to elevated ketone levels or decay, things like infections or missed insulin doses. How do you like now help to be a set of eyes or a sounding board or even just a recognizer of symptoms of decay with the people around you and their kids? And, you know, even two weeks ago, we at the time of recording, we're at Friends for Life in Orlando where there's thousands of people with diabetes all in one place. How can parents and caregivers help educate the people around their children? So sometimes that's teachers, coaches, nurses, or even as adults, you know, managers or co-workers on how to make sure to accommodate them at school or at work.

[00:09:46] Leigh Fickling: Yeah, I think it's interesting. So my job is the chief operating officer for children with diabetes, but I like to call myself the chief mom officer. You know, not only to Ava with her diabetes, but also, like you said, with my co-workers and the people that we work with all the time, you know, the families that interact with us at Children with Diabetes. And I think that diabetes looks different with every single person. So your diabetes is different than Ava's diabetes. It's different than my co-workers' diabetes as well. But I think that it's important for all of us sort of at a baseline to understand what those signs and symptoms of DKA are. And so, you know, we had a lot of time that we spent growing up with Ava going to her endocrinologist talking about sick day management. My co-workers, you know, that are now in their 30s and 40s that have had type 1 diabetes for many, many years sometimes forget about what sick day management looks like. And so as the chief mom officer, I sort of keep an eye on all of them, following them on our continuous glucose monitors and sort of, especially whenever we're traveling domestically and internationally to a lot of different diabetes conferences, We have systems put in place, you know, because I feel like I'm always awake at night sort of watching Ava's blood sugar. So I might as well be awake at night watching their blood sugar, too. But it's been interesting sort of watching Ava grow up with kid diabetes into tween age to teenage diabetes now and then working with my coworkers, you know, that have the adult version. You know, again, many of them were diagnosed as kids. But I think all of us sort of come from that place where we make excuses. You know, it's a cold. It's sickness. It's whatever it happens to be. And when the excuses start, I sort of try to be like a gut check for them to be able to say, but is it? You know, and certainly if it's somebody that is vomiting because they're sick or somebody that is, you know, extra lethargic and sort of presenting those signs of DKA, I sort of swoop in as that chief mom officer and say, but what if it is, you know, ketones? You know, do you think that we should check? You know, and there have been times that my co-workers, I will rat them out here on this, are not as prepared as I would like them to be in terms of the supplies that they keep in their house. You know, I live in North Carolina. Many of my co-workers live in Ohio. One of my co-workers was complaining that she was feeling ill. And, you know, she said, my chest feels heavy. You know, I just don't feel right. And so we were recognizing that it might likely be the signs of DKA. and she had no ketone strips to be able to test. Was it, you know, were there ketones that were present? So I door dashed her some ketones. She also did not have a blood sugar meter to be able to check because she had been relying on her continuous glucose monitor. So I did a giant door dash care package from my house here in North Carolina to her house in Ohio to include a blood sugar meter for her to be able to check her actual blood sugar, ketone strips for her to be able to check for ketones, and then some Pedialyte or Gatorade or whatever it was, because if we needed to move into sort of sick day management protocol, she didn't have the tools that she needed to be able to do that. You know, and thankfully it was not DKA at that point, but it was something, you know, that I think a lot of us sort of have to deal with. I think that one of the things that we're doing now, because we've seen so many, you know, diabetes, you know, whether it's severe lows or severe highs or anything in between, whenever we have conferences and events that Children with Diabetes is putting on, we will normally put together baskets that we keep in the room. So whether those are in the restrooms or whether they're like out in our, you know, facilities, wherever we're having these events, that will include things like ketone strips, things to be able to bring a low blood sugar up because we know that, you know, we don't want diabetes to stop us from what we're doing every single day, but sometimes diabetes will get in the way. And so if you don't have the tools with you to be able to sort of help assess what the situation is, Children with Diabetes wants to kind of help you in the background to be able to help you get through that. I think it's really

[00:13:31] Rob Howe: a good reminder because I have often said on this podcast that, you know, diabetes just adds an extra step and like the key is to be prepared. But I myself can fall into that trap as well, where, you know, I don't get sick very often, thankfully, knock on wood. And so when I started this series and we were talking about all the different talking points that are really important from a treatment perspective, you got to make sure not only do you have ketone strips, but they're not expired. And so that was a learning for me. And it's similar to severe low blood sugar, severe high blood sugar and severe low blood sugar kind of go hand in hand that we don't expect to encounter them all the time, but they can happen quickly. And it's not just that diagnosis. It can happen to someone when the schedules are interrupted or you mentioned traveling and time zone change or maybe just an occluded pump site or something of that nature. And you're just not feeling well and you can quickly write it off in your mind as something that's not diabetes related, when in reality, your risk for DKA is extremely high. And so you've got to have a plan in place to make sure that you're able to take action there. Yeah. And I think the

[00:14:32] Leigh Fickling: plan needs to be quick acting. You know, it's one thing for you to be able to say, well, I have these materials that I need, you know, to be able to help me, but they're at my house, you know, and we're working an event two hours away. Well, what good is it going to do you if you don't have access to those? And I think that one of the things that I've learned with Ava over the years, the few times that she has gone into DKA since her diagnosis is it can come on very quickly. I think that, you know, sort of in your mom mind as a caregiver, you think, well, I have time. You know, I'll be able to catch it before it turns into DKA. And we had a situation at the school when she was in elementary school to where I dropped her off in the morning. She was high because she had had breakfast before she went to school, which was our typical routine. We had about a 45-minute drive from our house to the school before I dropped her off in the car line. So her numbers were a little bit higher than I would have expected. Of course, I was blaming it on the breakfast that she had eaten. So I watched her numbers on my app where I'm able to sort of follow her during the day, and I noticed that she continued to stay high longer after I would have thought sort of the breakfast insulin would have taken control. I talked with the nurse briefly that morning. We continued to give her insulin to try to combat that high. And again, sort of the excuses come back of, well, you know, who knows what's happening? You know, maybe it was more carbs then we thought maybe we didn't get the bolus right. Maybe we didn't get ahead of it fast enough. And, you know, I think whenever you're trying to deal with mealtime boluses and you're dealing with a small child, you know, a lot of parents will be hesitant about giving, you know, a full-size meal bolus because what if the kid decides, okay, well, I just don't want to eat now. You know, I want to go watch this thing on my TV. And then you've loaded them up with insulin and you don't have enough carbs to sort of be able to counteract that. And so we certainly went through that with our car rides in the morning going to school, but she had been at school. I think I dropped her off at 8 o'clock and by 1 o'clock the nurse was telling me to come pick her up because she was showing these signs. And so, you know, again, that was basically a morning in our lives. When I'm trying to work, I'm trying to do my job. My husband is at work. I need them to go to school and do their school day so I can go about being a professional working in my career. And so by the time I went and got her, I recognized that something was definitely not right. And we took her to the emergency room and she was in DKA. and it was from an infusion site that had been bent. And so I think that that lesson really taught me and it's something that I share with my coworkers now. You know, you think this situation with DKA is gonna take hours or days, you know, to be able to build up to DKA and you think that you're gonna be able to fix it and you certainly can if you're prepared and you recognize what those signs are. But I think that what I really learned from that experience at the school is it came on much faster than I thought. You know, thankfully we got her to the hospital and she was able to be treated and we had a good outcome from that. But, you know, had I continued on with my meetings at work and, you know, had the school said, well, we'll just keep her here till the end of the day, you know, we could have had a much worse outcome with that.

[00:17:25] Rob Howe: Well, and like you said at the beginning, like diabetes is so different for everyone and every day is different, right? And we don't know sometimes in a situation like that when the last time we actually got the dose of insulin that we were expecting. So now with that experience, how do you and your family help make sure that if Ava has an issue with elevated ketones or DKA when she's away from home or you're not directly around her or maybe traveling or at another event, how do you make sure she has

[00:17:52] Leigh Fickling: what she needs if you're away from home? Yeah, she has the materials that she needs here at our house. So she has urine ketone strips that are not expired. We have blood ketone strips that are also not expired. One of the things that we do is prepare kits for school. So we keep those, of course, in the nurse's office, but then we also sort of keep go kits in a couple of different locations in the school. And in those different go kits, which is basically the size of a pencil box, I keep a blood ketone meter in each one of those. And I do that because I'm worried about lockdowns at the school. So, you know, if she happens to be at one end of the school or in a separate building at the school and she can't get back to sort of her home base at the nurse's office and she needs to be able to check to see where she is, you know, we want to make sure that she has the tools that she needs to be able to do that. Certainly now as a 16-year-old, she's able to use a urine ketone strip, which is so much easier, you know, than trying to get a kid to pee on a strip, you know, back whenever they're a toddler. That was very challenging back in those days. And so we certainly preferred the blood ketone strips at that time. You know, I think it's being prepared, having the tools that you need, and then sort of knowing what to do once you see, you know, whether there are elevated ketones that are there. I think that, you know, another interesting thing in terms of our lives and the chief diabetes mom officer is that Ava and now has a boyfriend that is type 1. It will be 18 very soon. And he was diagnosed about five years ago. So his diabetes is new and he certainly has not, he hasn't gone through things this sort of the same way that we have over the last 13 years with our diabetes. And so a lot of times his symptoms are very different as a teenage boy versus me dealing with a teenage girl and also dealing with my coworkers. And he does not immediately go to the place of, well, what if this is ketones? And so he lives about an hour away from us and sometimes he'll come to our house whenever she's still at school and he's gotten out of school earlier. And I came home and found him here in our house and he was very pale, very sweaty. I recognized that there was something definitely off about him and his blood sugar was high. And I went and got the blood ketone meter out and it was very, very significantly high. And sort of immediately went into that plan of, OK, now what do we need to do? You know, the ketones are present. How do we flush these out? you know, giving him a manual injection and then helping to teach him because right now he will be a senior in high school, but next year he's going to be on his own. So then when he goes out into the world of being a young adult and going to college, you know, what are the tools that I can help provide him with to be able to recognize this isn't sort of just a regular high? You know, this high feels differently. What does that feel like inside of my body? And then what are the tools that I need to be able to sort of test for that and then help myself before I wind up in the hospital?

[00:20:33] Rob Howe: Well, I think it comes back to what I always say, a friend with diabetes is a friend indeed. You can learn a whole lot more from someone who has dealt with this situation and may be more educated or had a different experience because when you're diagnosed at 13, I can promise you that I would not have retained much of the initial knowledge if I was given it by the time I was 18, just with the amount of teenage thoughts and hormones and stuff going on in your brain at that time. Obviously, you know, really important to talk to everyone about your diabetes and make it make them aware of it so that we can collectively learn and build a safe environment. I do want to talk a little bit, kind of shifting gears away from your diabetes mom, chief diabetes mom officer, and shift more into from an adult perspective. Because I think your expertise on workplace accommodations and the work that children with diabetes does to help educate, because the good news is we grow up. Kids with diabetes turn into adults with diabetes, and our diabetes comes with us. So workplace accommodations are diabetes is covered under the Americans with Disabilities Act. But what does that actually mean in practice for people with diabetes in the workforce? And what approaches do you recommend for people with diabetes to bring that up with their employers? At what point in the sort of interview or employment process does that come up? And then, you know, for you as well, like how does this show up in the day to day at children with diabetes?

[00:22:03] Leigh Fickling: Yeah, so my background before I became the chief diabetes mom officer was working in higher ed administration. I'm also an attorney. I've worked in education law, disability law and family law for a very long time. And so, again, sort of having over 30 years of experience working with individuals with disabilities in those accommodations, whether that's in K through 12 and college or the workplace and beyond. So that is my professional expertise. And as you said, you're exactly right. Diabetes is a disability under the ADA. I think that, you know, whenever we talk about that sort of in the diabetes online community, there are many people out there that sort of want to fight you, especially parents of kids with diabetes. And they'll say, my kid is not disabled. But I am here to tell you today that you meet the definition of disability under the ADA. That is the physical or mental impairment that substantially limits a major life activity. And so your major life activity is the function of your endocrine system. And so we talk about that because I want you to know that you are covered under this federal civil rights law. And I don't tell you that because I want you, you know, I sort of talk about disability accommodations in terms of having a sword or having a shield. You know, I don't want people with diabetes to sort of hide behind it and say, you know, say, well, I can't take the trash out today because don't you know I'm disabled under the ADA? You know, you still need to be able to do your chores. You still need to be able to participate in your job and do that type of thing without hiding behind it. But should you face possible discrimination in the workplace or at school or at a hotel or, you know, at a conference or things like that, you need to be armed with the information like a sword to be able to go out and fight this disability discrimination that you may be encountering. You know, a lot of times whenever we're thinking about workplace accommodations, many people with diabetes do not disclose their condition to their employers. I think a lot of times people do not want to disclose because they're afraid, especially at the applicant phase, that they might not be selected for the position. They might be sort of deemed less than or even maybe blackballed through an application process. A lot of times they will not disclose as an applicant. The way that it looks like a lot of times in places of employment is they'll tell a co-worker, you know. And Jeff's got a great story about, you know, when Marissa went to college and he was trying to explain to the roommates about glucagon. You know, sort of without going into a very long story about what glucagon is and how it reacts in our body for severe low blood sugars. He took the old red kit for glucagon, double-sided Velcro on it, and put it on her bunk bed. And so then they were able to say to the co-workers or to the RA or whoever it happened to be, you know, in case if I go extremely low because of my diabetes, this is what you need right here, and point it to it. And so when we think about workplace accommodations, sometimes disclosure looks just like that. You know, maybe you tell the person in the next cube over from you, you know, if I run into some sort of issue related to my diabetes, this is where I keep a rescue medicine in my purse that's in this front pouch. Similarly, should you be facing, you know, conditions that may result in something like DKA where you might need some assistance, you know, having a trusted friend in the workplace is a great way to sort of start out in terms of accommodations. But your employer likely has a duty to be able to explore reasonable accommodations with you. And that might be, you know, in the workplace whenever we're thinking about those accommodations related to diabetes, you know, permission to be able to test your blood sugar at any place at any time, access for you to be able to have things, to be able to treat your low blood sugar or insulin. Certainly, whenever we're thinking about people that maybe work in health science fields and they have to put all of their belongings in a locker whenever they come into work and they're not allowed to carry anything with them, you know you have, you need to carry things with you. Now that a lot of our insulin pumps are controlled by our phones, places of employment that will say, you know, we have a no cell phone policy while you're on the clock. Well, that's not going to work if you have to use your phone to be able to control your insulin pump. So those are reasons why we would seek accommodations in the workplace. You know, permission to be able to go to doctor's appointments as needed. And certainly should you face something like DKA or you have some sort of diabetes-related emergency, to not have those absences counted against you in terms of being tardy to the workplace or being away from work. Sometimes they'll have like if you're missing more than three days, they have the ability to sort of be able to release you from employment. But if you're having a really significant diabetes-related issue, you don't want that to be held against you. And that's the purpose of an ADA accommodation, you know, is to really level that playing field for you to be able to do your very best job despite

[00:26:25] Rob Howe: diabetes. And I think, you know, relative to this as well, like this topic of DKA, like making sure that you have space in your workplace or in your desk or your cubicle or in the community area to keep your supplies in case of emergency. And I think speaking to what you said at the beginning, which is that there's a lot of rhetoric that resists the idea of disability. And in a lot of ways early on, I was like the poster child for that. Like you can just you can live whatever life you want with diabetes. But I like the the analogy of the shield and the sword because it takes courage to advocate for yourself, even in those small moments, even with just a coworker, but especially with a manager or a hiring manager or somebody who's an authority over you, because it says, hey, I have a difference. I'm disabled. I'm differently abled, as some people say, because I may need something extra. I may be in trouble at some point through no fault of my own. And I need to make sure that not only everyone knows about it, but that I have the ability to help solve that problem in the moment. And that I also can help with the community around me of like help you guys help me solve this problem in the moment. And those are really challenging to do the first time, but I think we get better at them as we practice. And so I'd encourage.

[00:27:35] Leigh Fickling: Yeah, I totally agree. And I think the other thing is, you know, by speaking up and by advocating for yourself, you're also helping those other people out there who may be working, you know, at your same place of employment. Very much so. And like when I'm thinking about like being in HR, a lot of times the work that I've done, I've rolled up to an HR division, you know, and they're responsible for benefits management. And so, you know, if you're struggling as somebody with diabetes and your cost of insulin is too much or you're not able to be able to get access to something or you're having an issue, by speaking up and sort of by sharing your information with your manager, it's going to get to the right place. And so as we get to the fall and we think about what open enrollment looks like, you know, at our places of employment, you know, if they know you and they know that you may have some of these issues, you may be able to not only help yourself as a person with diabetes in the workplace, but sort of shape what does the future of work for people with diabetes look like. And so, again, normalizing, you know, right now I'm high and I may have to go to the bathroom 15 times this morning. Right now I'm really thirsty or I may have brain fog and I might be a little bit sluggish. And, you know, maybe I need to turn my camera off on this Zoom meeting instead of sitting here and being like totally engaged with this. We use Slack as our method of communication of children with diabetes. And I mean, I wouldn't say it happens once a week, but it happens very frequently that somebody on our team is having some sort of diabetes related issue. You know, whether that's a low that they need to sort of log off for a while to be able to, you know, treat it, to bring it up, or whether they are feeling like they've got ketones. And that very frequently happens within our group where they're able to recognize those signs and they'll say, you've got to step away for just a little bit. And we give them that space to be able to step away and go take care of themselves. Because really, you know, when you try to push through it without dealing with whatever diabetes is presenting to you, you're really not giving it your all, you know, at work. Yeah. So an employer really wants you to be there and be engaged. And if diabetes is sort of getting in your way, the purpose of an accommodation, you know, is to sort of allow you that space to be able to go deal with diabetes. You know, I mean, like last night, one of the co-workers was writing in and saying that her dog ripped out her infusion set, her continuous glucose monitor fell off. Then when she put a new one on, it started bleeding. And so like she was just having like this terrible like diabetes situation where everything that could go wrong was going wrong. And we were working on a group project together over the weekend, preparing for our regional conference coming up. And we finally just said, just go. Do what you have to do. You know, because right now you are in the middle of like a diabetes nightmare and you're not really helping any of us at this point. So just go step away. And so I think that, you know, finding the courage to be able. And again, you know, maybe you're not going to go through a formal accommodation process with HR. Maybe you are just going to tell your cubicle mate, you know, and you're just going to let them know, hey, wanted to let you know I have diabetes. I think that one of the things that I've always taught Ava is to come up with like this 30 second elevator pitch. And that elevator pitch is going to change, you know, over time. And so, you know, I think that, you know, when she was three and she, I mean, her body was so little. And so her diabetes devices looked so big on her body. And so as I was teaching her this concept of, you know, sort of being able to answer questions appropriately, you know, we started off with what is that thing on your arm? And the thing on her arm, I think, was her insulin pod. You know, when she was three, her answer was, that's my diabetes. And, you know, when a three-year-old says that to an adult, okay, I get it. Like, you know, basically that was three more.

[00:30:55] Rob Howe: No need to press them for more information. No need.

[00:30:57] Leigh Fickling: Okay, that's my diabetes. And so then as she got to be a little bit older, that 30-second speech changed. What is that thing on your arm? That's a medical device. Then when she hit that awful tweenage year, what's that thing on your arm? That's none of your business. So then I was like, that is not, that's not the way for us to be able to make friends and help educate people. You know, and now she's very clearly able to say, you know, that's a continuous glucose monitor. That's my insulin pump. And so I think that, you know, as you're thinking about sort of taking diabetes out into the adult world, think about that 30 seconds. So whether that's you telling a coworker or your manager or somebody from HR about what is that diabetes or when you're out traveling, we travel so much. You travel a whole lot, too. Maybe that's talking to somebody at TSA. Maybe that's talking to somebody, you know, at a conference where you know no one, but you suddenly need help. You know, we don't have to get into, well, back in 2013, she was diagnosed with diabetes and almost got a Hello Kitty water cooler. You know, you've just got to kind of adapt to be able to come along. And I think that by being educated, by talking about the things that we've talked about today, you know, in terms of the symptoms of diabetes, the symptoms of DKA, having the tools that you need is super important. and that's going to be able to help you sort of be able to move forward confidently into your world with diabetes.

[00:32:10] Rob Howe: And I love how you framed it at the beginning. The difficulties that you encounter doing that today can help someone else down the road. I think if we can get outside of our own selves and help and apply that to others, that's always a really good way to feel better about that effort. And it does work. I think, you know, people that I've worked with in the past, whether it was athletic trainers or, you know, co-workers, the next time that they encounter someone with diabetes, Oh, well, I remember I worked with Rob or I remember this happened to us one time. So I can help you if needed. And that really does help. And it's sort of a one to one process. I do want to as we close this interview, your experience with diabetes as chief diabetes mom and the chief diabetes mom officer is very unique. And I think your personal journey and your family with Ava and her diabetes, when you think about where you guys were in 2013, googling the symptoms, deciding whether we're going to get the Hello Kitty water bottle, and you see the impact that your work and the team and the organization's work at Children with Diabetes has had on other parents like you. What comes up for you when you think of that work?

[00:33:13] Leigh Fickling: There were so many other seasoned diabetes parents that were ahead of me. And I think that when I think back about, you know, my experience with children with diabetes, I sort of lurked for about two years before I became actively involved with the organization. And during that lurking time, we were still alone. You know, now we had the diagnosis. We really didn't know anybody. We weren't really participating in local events where we were living, but we were trying to learn as much as we could from people on the Internet. And so I think a lot of my ideas that I have had that have been extremely successful came from very seasoned diabetes parents, you know, like the lockdown boxes at the school. and all of that. I think that we can learn from each other. And we certainly do not get it right every single day. I think that that's just the nature of diabetes. You can do it for what you consider. You can do a great job with it for several days and then something's going to go wrong. And then it feels like you're starting back over again. I think that for much of the last 13 years, I have felt like I have been living my life in three-day increments. Every time we change her insulin site, what's going to happen for this three days? Will we make it three days before we have to change it again? Same thing with a continuous glucose monitor for whatever period of time that sensor stays on her body. That sort of is my gauge. But then knowing that we're going to reset and now we've got to do it all over again forever and ever. And so I think that having a support system by having the tools to build your diabetes toolbox and understanding what to do. Because I think when things go wrong, it's very easy to go into a panic. And so like, you know, when I found Jacob very, very, when he was very high with those high ketones, I think because I understood and I had a plan of action, I knew sort of how to jump in there and help him in that moment. And so I think that a lot of the information that we get from our providers, you hope that you never have to use it, but you need to stay on top of it. You know, don't just hear it back in 2013 about DKA and think that it's never going to happen to you because if it does happen to you, you're going to need to be able to recall that information and be able to confidently go forward to be able to help resolve the situation.

[00:35:14] Rob Howe: And I think it's a really good practice when something like that, because we're not always in control of what things, right? And it's not just that it can be an included site on a trip, or it could be forgetting an extra site when you need to change it, or it could be, you know, making a genuine mistake counting carbs or something like that. And because the risk of DKA is always there and because we're living with diabetes and doing a very complicated thing, like you mentioned, in three-day increments or seven-day increments or what have you, it's equally important when things go wrong and we are prepared to celebrate that we went through all this and all of these challenges came at us and we were able to triage it. We were able to work our steps, to work our plan, even when things went unexpectedly. And I think that's a really important part of the resilience of living with diabetes and combating that diabetes burnout because there are no paid time off for people with diabetes. We don't get to take the vacation. And you're doing a great job if you're just making it from that in that three day cycle, not ending up in the hospital or not having to do those things. And so I really do think that as we take next steps from this type of series and this awareness about the importance of staying vigilant and prepared so that when DKA presents itself, we can see the signs, we can have our measures to test, and we know what actions and steps to take, that we celebrate when we do those right because it's a really challenging thing. And living with diabetes is not something that never quite gets easy, right? It's just there's always going to be room for the unexpected. That's right. Leigh, thank you so much for your time today and for all that you and your team do for people with diabetes. I am a huge fan of Friends for Life and what you and the team have done. Jeff and his family are diabetes creators, ultimately, seeing a space in the world to create something that they wanted and that didn't exist. And I just am in awe of all of you guys. So thank you so much for contributing to Diabetics Doing Things. And we'll see you next time.

[00:37:07] Leigh Fickling: Thanks, Rob. It was great to be here today.