From Pharmacist to Mom: Navigating Type 1 Diabetes and Celiac Disease

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Melissa (1:15): Diabetes management, if you get the tools and the support that you need and you have someone giving you that guidance and then you get the practice, right? It doesn't have to be as hard as it feels in the beginning, for sure. And it doesn't have to stay feeling that hard where you're constantly on guard. You're judging those numbers all the time. You're you're feeling like a bad patient or a bad mom if your kiddos numbers aren't good or whatever.

Melissa (1:43): It doesn't have to be that heavy. It can be smoother.

Unknown Speaker (1:51): I saw it at the handwashing station at the entrance of the NICU. I see it in the playroom during medical play bingo. I see it near the fish tank in the surgery waiting room. There is a powerful unspoken language between two parents who have never met, but know in their deepest soul what the inside of a children's hospital feels like. It is joy and it is grief.

Unknown Speaker (2:14): It is love and it is fear. It is miracles and it is loss. This podcast exists to tell these stories. I'm Katie Taylor, a very proud child life specialist, and it is my honor to be your host of Inside the Children's Hospital. Hello, my friends.

Katie Taylor (2:34): I'm so happy to be with you today. My name is Katie Taylor, and I'm so grateful that you chose to spend some time with us. Today's episode is well worth a listen. Our guest Melissa is a clinical pharmacist, and she says it in the beginning, but literally her whole career prepared her to be able to take care of her son. And she is actually not the first parent that we have had on this podcast who has ended up diagnosing their own child with type one diabetes because they saw the symptoms and knew the clues ahead of time.

Katie Taylor (3:07): And because of that, it saved them a lot of hardship and turmoil in the beginning of the diagnosis period. Now, we're also going to get to another medical diagnosis that her son got and how the two are actually linked together. I didn't know about that, but apparently a lot of families who have type one diabetes also can have celiac in the same person and within the family. Talk So about complex carb counting and having to be so diligent about what goes

Unknown Speaker (3:37): in your child. We talk about all of it. So I'm going

Katie Taylor (3:40): to stop speaking now so we can get to our conversation, but thank you so much, Melissa, for being here. Excited to chat with you because I think you bring a lot of kind of dynamic expertise, both in the parenting a child with medical needs, but also your clinical background and how you're marrying those two things together right now is really, really impressive. Why don't you start off and just tell us a little bit about you, Melissa, who you are, where you're from, and just about you.

Melissa (4:10): Yeah. Thanks, Katie. I am from the Buffalo area of New York State. I am a clinical pharmacist and my story is sort of bizarre. I think the one of the things I say all of the time is that my entire career was prepping me or training me to take care of my kiddo.

Melissa (4:33): I have been a clinical pharmacist managing type one diabetes for, gosh, fifteen years now. And four years ago, I diagnosed my youngest kiddo, who was six at the time, as a type one diabetic. And our journey just looked much different than what I experienced watching patients in clinic, and what they were going through. And that led me on this journey to kind of offer different things to people because our journey was so much easier than what other people were going through. And so to kind of step back and give you like a little bit of the story of leading up to that, One of the moments that I think was pivotal is Caleb was five, and we're sitting in a gastroenterologist office.

Melissa (5:26): It's 04:30 in the afternoon. I thought it was a routine follow-up after having an endoscopy. I did not expect to see anything really happen out of this appointment. It was just, I thought, routine follow-up. He'd been nauseous, vomiting for months.

Melissa (5:45): His blood work had come back fine. He was negative for celiac in his blood work. So I was not expecting his celiac diagnosis, which is what we got. I was literally thinking about what kind of takeout we were going get on the way home because it was a 04:30 in the afternoon appointment. And all parents know, by the time you get out of the doctor's office and get home, you just want something easy, right?

Melissa (6:08): You're not making dinner. And the doctor comes in and says he has celiacs and starts explaining that we need separate pots and pans and we need separate toaster and we have to avoid anything that has wheat and gluten and barley and rye and worry about cross contamination and where we store things in the fridge and the pantry. And I'm just like, what am I going to feed my child today? Right now? I have nothing that I know is safe for him.

Melissa (6:38): I have no idea how to cook something safe for him. I don't have gluten free pans at home. Like, what am I supposed to do today? I was already a pharmacist. I was already in the healthcare space.

Melissa (6:51): I knew more than most people knew about pretty much any diagnosis. And I still felt completely overwhelmed. But the reality is that moment was hard, but it didn't break me because it wasn't the hardest thing I'd ever done. I had already been through a crazy bunch of circumstances of chronic health issues in my family. My husband was in a motorcycle accident.

Melissa (7:22): My first week of pharmacy school. We didn't know if he would live. We didn't know if he would ever walk again once we realized he would live. He was in the ICU for a week, the hospital for a month, had 15 surgeries during my four years of pharmacy school, which is really intense, like medical school. Lots of people ask me why I did not quit.

Melissa (7:46): That never even occurred to me. I didn't understand how quitting school would have been helpful for me in that situation. So I finished pharmacy school anyways. And then our oldest was born in 2013. He had severe infant reflux, was not gaining weight, was kind of spitting up all the time.

Melissa (8:09): We got through that. Then he had a severe speech delay. Didn't say a single word until he was three. So we went through the workup for that. We did hearing tests and cognitive delay tests and all of the things.

Melissa (8:23): And then in 2016, my youngest was born and he was healthy then. He was born in February. In May or June, my husband suffered second and third degree burns from an explosion. So I had a toddler who was not speaking at that point and was very frustrated, couldn't communicate. I had an infant and an injured husband.

Melissa (8:49): So that was 2016. In 2019, my husband had his cerebral artery that goes up from the neck into the brain tore and he had two strokes. And then COVID hit in 2020 and we were homeschooling a pre K kiddo and a first grader, which was very challenging. We had one singing and dancing songs and one trying to take a spelling test. And as everyone who homeschooled through COVID knows, that was challenging for sure.

Unknown Speaker (9:25): Yeah.

Melissa (9:27): And through all of that, I was a clinical pharmacist managing patients on call 20 fourseven, had stepped up in my role at work, became the director of the department was leading a team. I'd gotten really good at this surviving the chaos kind of thing. But then Caleb's celiac diagnosis just kind of hit me and it was like, this is so much. When do we get a break here?

Unknown Speaker (10:00): And

Melissa (10:02): I realized that I needed to do some things. I didn't want to just be thriving. That is where kind of my personal development journey started. I worked with a coach. I worked on challenging limiting beliefs.

Melissa (10:16): I worked on challenging that, you know, I had kind of gotten used to overwhelm and that was sort of now my comfort zone of where I lived. And so I worked through those kinds of things. Then when Caleb was then diagnosed, well, we diagnosed him in 2022. Our journey just looked so different because I had already done so much work. I'd already done a lot of hard things.

Melissa (10:47): I'd already challenged a lot of the beliefs that come with chronic health issues. And so when he was diagnosed, I did all of the things that I knew needed to be done. I got him on a sensor right away. I got him on a pump, an insulin pump right away. I built processes and systems to make this smoother for us and easier for us.

Melissa (11:13): I advocated for him. I got him involved. I taught him how to advocate for himself with the school nurses. And that's when I really realized most of my patients come in feeling incredibly overwhelmed by this diagnosis, incredibly frustrated. They often come in, almost like the stages of grief, right?

Melissa (11:36): They come in, in denial or angry, that this is happening to them. And our journey was just so much different. And I realized that people need something different than what the healthcare system offers. The healthcare system offers some education, nowhere near enough. And it doesn't offer much support in the way of teaching people the things outside of the clinical stuff.

Melissa (12:05): Like, yeah, having that clinical background was huge for me. I knew how to dose insulin. I knew which insulin pump to choose. All of those things that are really challenging. But more than that, I knew to look at his numbers as data, not as a judgment of that's a bad blood sugar or a good blood sugar, or we're doing it right, or we're doing it wrong, not assigning like a moral value to a blood sugar number, which most people with type one diabetes do.

Melissa (12:42): You hear it all the time. Oh, I'm a bad diabetic or I have good numbers this week. Okay. But they're just numbers. They're not morals.

Unknown Speaker (12:50): And

Melissa (12:53): so I saw that really we needed to provide more of that kind of thing. We need to build systems and processes. The number of patients who have called me on vacation because they ran out of something and needed an urgent supply sent to a pharmacy near them. The number of people who even just out and about, or have an issue with their insulin pump at home and don't have backup supplies. You know, I have a system for making sure we always have backup supplies, extra supplies with us, a plan.

Melissa (13:21): Everybody knows the plan. Everybody's on the same page. We have like a diabetes go bag that has everything in it that my kiddo needs if we leave the house. So building those systems and processes, the healthcare system doesn't teach that. You just figure it out as you go.

Melissa (13:37): And when you're in a crisis and you realize this didn't work, what do I do different next time? Yeah.

Katie Taylor (13:44): I have so many questions that are just like ruminating in my brain. Wanna start a little bit from the beginning and take you back to that celiac appointment. What do you remember? I have so many questions. Was your son there with you?

Katie Taylor (13:59): Because it was like this follow-up. And you didn't have your husband or partner with you. What did you end up eating for dinner? Like, what did you end up doing?

Melissa (14:09): Well, when we walked out of the appointment, I called my husband and I was telling him to look at everything in the pantry to see if there was something that my kiddo could eat. And it really was like, okay, we have, we have a cereal at home that is gluten free. So it is cereal for dinner in a glass bowl because glass is safe to use for celiac because nothing, the gluten residue doesn't stick to it. Anything like a, pan that has like a nonstick coating or anything like that, it can have little, little, little or plastic, little, little like nicks or scratches or scuffs in it where gluten can get stuck and potentially make that celiac kiddo sick. So I was like, okay, cereal and a glass bowl.

Melissa (14:57): That's what we're doing tonight. And then we, after we got my son to bed, we're literally like overnighting everything to our house, trying to get stuff and looking for groceries, and it was it was challenging for sure.

Katie Taylor (15:12): Yeah. It's like talk about the, like, okay. Here's a life altering diagnosis. Bye. And it's not that it's the doctor's fault.

Katie Taylor (15:19): It is the system's fault that I feel like there needs to be this, like, go bag, like you said, as to every celiac diagnosis. Here's your new pots and pans. Here's your new this and that. Here's your meal plan for the next week. Just to take off that mental load.

Katie Taylor (15:34): Did you end up connecting with any other families, like, soon after? I can imagine I would just be terrible pun, but very hungry to, like, meet a family that is, like, navigating this.

Melissa (15:47): Yeah. So fortunately and unfortunately, type one and celiac actually are very closely related. A lot of people who have one may have the other, certainly not all, but they are, diseases that often run together. So I actually have a few patients who were my patients as type one diabetics who also had celiacs. And I knew that.

Melissa (16:12): So I honestly called them. And I was like, hey, do you have any tips or tricks? And this one lady who's so fantastic, she also has a family member who the kiddos have celiac. And she's like, I have lots of things I can tell you, but let me put you in touch with whoever it is, her daughter, her niece, whatever. She has little kiddos and she is going to be so helpful to you because she's going to know the goldfish cracker kind of snacks, not the I'm a grown adult.

Melissa (16:44): I eat different things.

Unknown Speaker (16:46): Right.

Melissa (16:47): So that was fantastic. And this woman was so helpful and so, ready to chat with me. And she really helped me with figuring out the kitchen and like how to set up the kitchen and what things to worry about, things I never thought about, like separate hand towels in the kitchen if we were going to have gluten in the house. We have different colors of everything. So our kitchen is two colors.

Melissa (17:09): One color is the gluten free stuff, And one is the stuff that may potentially be exposed to gluten.

Katie Taylor (17:16): I can imagine too that you would also have to sift through a lot of the community education on carb counting for diabetes because it's another limitation in a diet. I guess it is probably nice that you know people who have both type one diabetes and celiacs, but can you talk a

Unknown Speaker (17:39): little

Katie Taylor (17:39): bit about kind of having to sift through, okay, here's another diagnosis, but we can't have this type of carbohydrate, we have to have this. Was that a hard balancing act and how have you adjusted?

Melissa (17:52): Yeah, when he, we were already kind of used to being gluten free by the time he got his type one diagnosis. So we were already eating mostly gluten free things, things that come with a label, like a lot of gluten free products that we buy are fine. Or if you I use like an app for carb counting where you can put your own recipe in. So if I make something with like a gluten free flour, I can just put that particular flour brand in and it'll give me a label. What I do think was really challenging, which we don't do often because there are not a lot of gluten free restaurants around near us, but when we plan vacations, we always try to find some in the area that we're vacationing.

Melissa (18:34): And so that I think is really challenging. It's hard enough to guess the carbs when you're eating out. And so his insulin dosing is based on his carbs. We have to put the exact number of grams of carbs into his pump. And so if you're getting say pancakes out at a gluten free restaurant, okay, if they're made with rice flour, that's a lot of carbohydrate.

Melissa (18:53): If they're made with almond flour, it's a much lower number and you don't know how they made it. Pancakes taste like pancakes.

Unknown Speaker (18:59): Yeah. Oh my gosh.

Melissa (19:01): And so I find those things to be super I use MyFitnessPal. Are tons of other ones, but MyFitnessPal had I had already been familiar with MyFitnessPal, and it has a great option to, like, put in recipes and save your own foods, which is great for things that you make at home. You can put in all your ingredients, say this makes whatever, 18 cookies, and it'll give you a carb count for each cookie. So it's super nice.

Katie Taylor (19:44): That's great. I wanna also, I'm so interested in your kind of personal development journey and also this beautiful analytical brain that you get to bring in your clinical work, but also with looking at numbers. And, you know, I've heard about assigning like moral identity to different foods. Like ice cream is bad and asparagus is good. And I don't think I've ever made the crossover that numbers are perceived that way when your child has a diagnosis.

Katie Taylor (20:19): But of course it is because it's like this guilt that can live inside all of us. And was that an immediate shift for you because of your training, or did that come a little bit later?

Melissa (20:34): I think that I had already kind of worked on this with patients a lot because I saw the toll that it takes on patients. When they come in and they have a bad A1C or bad blood sugars, I mean, sometimes people before they even, like, hand me their insulin pump or let me pull up their data, they're like, my numbers are really bad today because blah, blah, blah, whatever happened. I'm like, it's okay. I'm not going to yell at you, but most patients have had an experience where they have been yelled at for their numbers not being under good control. And healthcare providers are trying to help.

Melissa (21:15): They know that these numbers increase the risk of complications and something bad can happen to the patient. We often in healthcare have this tendency to shame people, not necessarily purposefully, but that's often how it comes across. And so I had worked really hard with patients on changing that mindset, the same thing you said about food. Have the same thing with people coming in saying, you know, that their number isn't good because they ate bad last night. And I'm like, well, but food doesn't have morals.

Melissa (21:50): It just doesn't, and neither do these numbers. They're just data. They're telling us things. They're important. I'm not saying we ignore them, right?

Unknown Speaker (21:58): But what are they telling us? They're not telling us you're a bad person. That's not what they're telling us.

Unknown Speaker (22:04): Yeah. Wow. I can imagine you can find yourself applying that to a lot of different things in life and it probably becomes a really helpful tool.

Melissa (22:13): Yes. And I think a lot of the, like doing that with patients and seeing their struggle and then all of the personal development I worked on to like challenge these beliefs that we have that are not serving us. They're not helping us be healthier. They're not helping us be happier. They're not helping us hit our goals.

Melissa (22:34): They're just deterring us.

Unknown Speaker (22:36): Yeah.

Melissa (22:36): Using that sort of mindset work, to this concept.

Katie Taylor (22:41): Yeah. The negativity can be a barrier. That it's not like a physical barrier, but it can keep you from moving forward. And putting together that bag of to go bag that you need every time you leave the house, it can just be that mental and emotional weight.

Melissa (22:57): Yeah. People have so much resistance around doing some of these things. They don't want to be different. They don't want to have to think about their diabetes all the time. And I'm like, yeah, that's the purpose of the go bag.

Unknown Speaker (23:12): You don't have to think about, do you have everything? You just have to grab the bag.

Unknown Speaker (23:15): Yeah. Yeah.

Melissa (23:16): Kind of making that shift of, okay, I think about it once and I have it set up and I just have to grab the one thing instead of every time I leave the house, I have this huge checklist of things I have to make sure that I have with me.

Katie Taylor (23:28): Can you talk a little bit about maybe the way you were a caregiver from when your husband had that horrible accident versus the caregiver you are today? And, of course, that's come with a ton of time and ups and downs and challenges and learnings, but what are some tangible differences you are doing now that you maybe didn't do back then just because when you have never done it before, you don't know to do it?

Melissa (23:54): For sure. I mean, I'm a completely different human. For one, I was like, whatever, 21 or 22 or something when his accident Oh my gosh. Just a baby compared to now, so I definitely didn't have any of the life skills that I've developed through all of this. But I think some of the big things would be one of the things that my career really taught me is that I cannot care about your health more than you do.

Melissa (24:28): And sometimes that sounds kind of mean, like it doesn't mean I don't care, but I can't care more than you do. It's your health. And with a child, there's a little bit of a difference because they don't fully understand. So you can't, you know, when they're three, that's a little different story, but you do have to give other people the autonomy to do the parts that they can do that are age appropriate, depending on where that child is. In, in the case of my husband, as an adult, you have to give them that autonomy.

Melissa (25:04): And if you don't, you're not really helping them and you end up getting really frustrated. Because you're like, why aren't you doing this thing that I told you to do? Well, you don't know what their experience is really feeling like at that moment. And maybe if you were in their shoes, you wouldn't do it either, if it is a helpful idea.

Unknown Speaker (25:26): The right thing to do. Yeah. Did that feel scary to let go of the reins a little bit?

Melissa (25:34): For sure. I mean, pharmacists are notoriously type A and slightly neurotic at what I didn't even make them good at their job. Because they have to be very detail orientated, and typically they are, you know, that type A personality. So for sure it is, it is challenging and sometimes it's sometimes it's still challenging, right? Like my kiddo is 10 now and I have really tried to teach him to do a lot for himself because the reality is I am not with him 20 fourseven.

Melissa (26:08): He will fully have to manage this completely on his own at some point, not today, but we don't know when those rains fully transition. And it's, it's alarming, like anything you learned throughout childhood. You don't have mom and dad doing everything, spoon feeding you, cutting up your meat. And then one day you're 18 and you're on your own. Right.

Melissa (26:27): That doesn't work. And the same thing applies to blood sugar management. So he has been super involved from the beginning. He puts his own sensors on. He puts his own infusion set on for his pump.

Melissa (26:39): He can push the buttons on his pump to give insulin himself. Yes, we supervise these things. He can do his own finger sticks. It was his third insulin injection. He did it by himself.

Melissa (26:49): Again, we watched, we made sure it was the right dose, but he did it by himself. He was six. So I think, you know, giving that autonomy was always really important to me, but that doesn't mean there's moments that it's not hard. Sometimes I see his blood sugar doing something because I get alerts on my phone, my watch. I am always kind of aware.

Melissa (27:15): And you have to decide when you're gonna step in and when you're gonna let him kind of learn and give him a few minutes to figure it out himself and see what he can do. Because again, someday, I'm not going to be looking at his numbers 20, or he's going to be old enough that he's not going to answer the phone when I call.

Katie Taylor (27:31): Yeah. It's message that it's not black or white because you're right. We have to teach kids that they're capable and that they can and that we trust them. And then there's also this, like, whole lived experience you have with having to have a different set of kitchen knives and having a husband who had 15 surgeries You've worked with, you know, so it's like, oh, it's difficult. It's difficult.

Melissa (28:01): Yeah. But it is so important because the fact that he has learned so much. And again, I started all everything when he was first diagnosed. I tried to get him to do as much as possible with supervision, but on his own physically doing it. And it makes a huge difference.

Melissa (28:19): He had a substitute nurse at school, a couple of months ago who. Wanted to do things different than what really needed to be done. And he is able to advocate for himself. He was like, no, his blood sugar was low. He treated it with the appropriate treatment that he's supposed to use.

Melissa (28:38): And then he just has to wait. And it's sometimes it feels like a really long time, especially to a very nervous nurse who doesn't know you very well. Yeah. And he she kept telling him to eat more, he was like, no, I do not need more. And she kept pushing it, and he was like, I am not eating anything else.

Melissa (29:00): Call my mom. And I think a lot of kids wouldn't be able to do that. But he's very confident. He was joking with me, same substitute nurses back actually right now. And he was joking with me.

Melissa (29:13): He was like, she thinks that I'm just a kid who doesn't know anything about diabetes, but I know way more than her. And I'm like, you're right. You do. You live it all day, every day. Her experience is, you know, a little bit of nursing school, which is very limited what you learn about type one diabetes.

Melissa (29:30): And then, you know, seeing kids in school here or there who have to come in for a dose once a day, she sees them usually. You live this 20 fourseven. Of course, you know more.

Katie Taylor (29:41): It makes me think of, like, so many scenarios in the hospital where this is just an example. So let's say you bring your child in. You know they're gonna need blood work. You know there's one vein that never works. But you've got a new nurse who's never seen your child before, and they're like, this one looks really good.

Katie Taylor (30:01): And you're like, I know, but it does not work. And you're doing that dance of respect because you're the one, you know, who's here to do this. Yeah. But I know my child best.

Unknown Speaker (30:16): Mhmm.

Katie Taylor (30:17): Can you talk a little bit about like, I love that and kids can kind of get away with saying like, no, I'm not doing this, you know, because but as a parent, it's a slippery slope. Here, we absolutely want you to advocate and to do it in a really respectful way that actually builds on collaboration and partnership and doesn't set this rift between the two of you. But it can be a it can be a dance.

Melissa (30:43): For sure. We are very fortunate that our normal school nurse is wonderful, and we have a great collaboration with her. We text all day. She's fantastic. In fact, even while she is on vacation with the substitute nurse in, she sent me a message to check on my kiddo because she saw what was happening with this lunch.

Unknown Speaker (31:02): There's no one day at school.

Unknown Speaker (31:03): Oh my gosh. What does that feel like?

Melissa (31:06): I mean, it's amazing. And I I dread when we have a different school nurse when he moves on to the next school because she has been so phenomenal to work substitutes are always a challenge. And I hear, I mean, I hear from so many clients that the school nurses, like their biggest challenge because the school nurses, the reality is the biggest thing they're afraid of is a really bad low, right? This again sounds mean. I don't mean it to sound mean, but they don't care if your kid has kidney failure in thirty years.

Melissa (31:41): Yeah. They're not going be around for that. They care about them not passing out today right now in their care. That's it. They don't want have to call 911.

Melissa (31:50): And so I understand where they're coming from. Like they're, that's what they're trying to prevent is that right now problem. But it is definitely a definite dance to figure out how to get them on the same page and to collaborate. And sometimes it's smooth and easy and the nurses are great and they follow everything the doctor puts in the plan for you. And other times you're advocating a little bit more.

Katie Taylor (32:19): One of the things that you wrote about before you and I talked today was really the reality that a lot of medical parents face when their child needs constant supervision. And that's that you don't get a lot of time away. And the field trips that don't include mom, the You had an example about him going to a wedding that you weren't at, you know, and that that just is the reality. And we can talk about self care till we're blue in the face, but that self care can't really include a weekend away. For sure.

Melissa (33:00): Yeah. I mean, my husband and I, we really don't leave our son with almost anyone besides the school nurse. We left him with my parents for a wedding, and it was really, really challenging. And I said, next time you're going, my husband, you're going to the wedding on your own because it just did not go well. My parents weren't equipped to handle the situation.

Melissa (33:26): My son had a really bad low, they had left the house, and they didn't take anything with them. I don't know why. They didn't tell us they were going to leave the house. You know, it was just really, really challenging. And we just don't leave him usually because it is not super safe.

Melissa (33:43): And as he gets older, you know, that will look a little bit different because he'll be a little bit better equipped to manage things on his own. He's getting there, right? Little by little, but he get he is a kid. Yeah. Grandma and grandpa were super excited to take him to an alpaca farm.

Melissa (33:59): He got all excited and completely forgot to grab his go bag that is supposed to Yeah. Go with him

Katie Taylor (34:05): Yeah. It's difficult. And I feel so much for these families like yours who are diagnosed at a young age. And we recently had Marley and Vane on. I don't know if you follow them on Instagram.

Katie Taylor (34:17): I have to send them to you, Melissa. It's his cutest family. But a twelve month diagnosis is like an it's a full decade then of little by little and teaching and not having time away, it's a real it it can be a challenge.

Melissa (34:34): For sure. And we my husband and I do a good job of, like, giving each other breaks. Mhmm. And, yes, that means sometimes we're not getting those breaks together, but we give each other breaks. Yeah.

Melissa (34:46): And then the other thing that we have incorporated to make sure that we still have some couples time is during the school year when he is in school, we try to have a day date from time to time. We'll go out to lunch instead of dinner because he's at school. He's with the nurse. He's safe. Yeah.

Unknown Speaker (35:01): Yeah. Super smart. I love it. I love it.

Melissa (35:04): You just have to be creative.

Katie Taylor (35:06): Yeah. Yeah. Yeah. So talk about this transition from being this amazing director at a hospital over pharmacist to what you're doing now and what it looks like.

Melissa (35:21): Yeah. So I think the thing that I saw the most is that with my patients, I try to do some of this. What I kind of would say is a little bit more like life coaching than truly diabetes management. Yes, we're doing the diabetes management of course, but honestly that part's easy for me. And it doesn't take as much time to teach those skills when you're really comfortable in it and you've been working with a patient for a while.

Melissa (35:48): I spend a ton of time, or I love spending time doing the more like, okay, let's challenge these beliefs. Set up a system or a process. Like make sure we have that go bag. Let's create the routine where once a year we check-in, we make sure we have all of the backup supplies that we need and nothing's expired and building systems. Unfortunately, the healthcare system doesn't lend itself to that very well.

Melissa (36:13): So I do try to do it at work, but it's limited, right? So I have really found that I want to spend more time doing that and more time helping these families who have tried to go through the health care system and are doing the best they can but really are just not getting the support that they need. I'm able to, in my own coaching program, work really closely with people, have a lot more frequent contact. You know, we don't have to go by the insurance company rules of how often we can be seen or, you know, follow this healthcare model. And we can spend the time on the things that whatever they're struggling with, that could be anything.

Melissa (36:56): Could be how do we teach our kid to advocate with the school nurse? How do we do this system? What go bag do we need? What process do we need for this? Instead of just focusing on the, Hey, we're gonna talk about your carb counting today.

Melissa (37:15): We're gonna talk about whatever thing is on the doctor's checklist. Right? It's whatever the client needs. And then, like I said, we can do that much more frequently than most doctor's offices can. We can do really close contact.

Melissa (37:32): We get weekly check ins, to build that kind of support that they need more than just an appointment.

Katie Taylor (37:40): How do families find you?

Melissa (37:43): So you can find me on Instagram. I have my podcast Insulin Inspired. I have my website as well. It's a great option to book a discovery call. They're free.

Melissa (37:56): We just chat through, what are your family's needs, what are you struggling with, am I the right fit to help you out, and what does that look like?

Katie Taylor (38:05): Okay. And your Instagram is melissaapacr, correct? Correct. Okay. Awesome.

Unknown Speaker (38:11): There's a few Melissa app is out there. I had to I had to look, but the underscore was helpful.

Unknown Speaker (38:16): Yes. Yeah. I had to put an underscore in there.

Katie Taylor (38:18): Yeah. They always have something that makes it look a little fun and wonky. Right? I really appreciate you sharing so honestly about what this has been like for you. Are there any pieces of wisdom that you were hoping to share that I didn't ask you about?

Melissa (38:32): I think the biggest thing is really just it doesn't have to be this hard. And I don't mean that to say it's going to feel easy all the time. I kind of liken diabetes management, and you could really use this with any chronic illness, as like driving a car. If I put you in the driver's seat, but you had never seen a car, never seen a steering wheel, a stop sign, a red light, a gas pedal, a brake pedal, windshield wipers, turning signals, you'd be like, what do you mean drive? What do all these things do?

Unknown Speaker (39:11): But

Melissa (39:13): that's not how we learn to drive. Right? We learn probably from the time we start to toddle around, watching mom drive the car or dad drive the car, watching them move the steering wheel. And then when we finally get behind the wheel, we don't know how to drive yet, but we're well aware of what a red light means from playing red light green light in pre K. And it's still hard when you first learn to drive.

Melissa (39:38): You're still not quite sure how much do I turn the wheel to keep it between the lines? How hard do I push the gas or brake? But then you do it for a little bit. And now if someone's like, Hey, how do you keep the car between the lines? You're like, I don't know.

Melissa (39:52): I just do. I don't even think about it. Right. And that's how diabetes management really can look if you get the tools and the support that you need and you have someone giving you that guidance and then you get the practice, right? It doesn't have to be as hard as it feels in the beginning for sure.

Melissa (40:12): And it doesn't have to stay feeling that hard where you're constantly on guard. You're judging those numbers all the time. You're, you're feeling like a bad patient or a bad mom. If your kiddo's numbers aren't good or whatever, it doesn't have to be that heavy. It can be smoother.

Katie Taylor (40:30): It's such a message of hope. Like, you're not gonna live in the scary, dark, uncertain, terrifying place forever. Like, you're gonna get to be driving the car again, and you're gonna back out, and you're gonna do a great job. You're gonna drive cross country, and you're gonna be okay.

Unknown Speaker (40:47): And you're not even going to think about it. That doesn't mean there won't be hard moments.

Unknown Speaker (40:50): For sure.

Melissa (40:51): You might be in a blizzard today and it might be, you're really focusing and it's slippery and it's scary. And then you drive out of the blizzard or the blizzard ends and it's okay again. Right. So there's still bumps along the road. It's not a 100%, percent smooth, but, it can be much, much easier if you get the tools and the support that you need.

Unknown Speaker (41:11): Wonderful. Well, thank you so much, Melissa. It was wonderful to talk with you.

Melissa (41:15): Thank you, Katie. I appreciate it. I love getting the chance to chat with you and I love what you're doing.

Katie Taylor (41:20): Me too. Thank you so much. For those of you who are joining us today, I am not a doctor. I'm not a therapist. I am a child life specialist And the suggestions and tips and resources that I talk about with parents on this podcast may be great for you and they may not be right for you.

Katie Taylor (41:39): So the most important person you can talk to about getting support is your care team, your doctor who knows your story and your child's story. So regardless of maybe what I mentioned or what other families mentioned here, we're not licensed therapists. We're not doctors. We're having a conversation about what the parenting journey has been like. So please keep that in mind as you listen today.