Type One Unscripted: Type 1 Diabetes
Delving deep into the day-to-day journey of those living with Type 1 Diabetes, our podcast pulls back the curtain on the challenges, triumphs, and real-life experiences that come with managing T1D. Together, we'll navigate the unpredictable highs and lows, share insights and tips, and foster an environment of learning and growth. But beyond just information, this is about community. We aim to amplify voices, share stories, and strengthen the bonds of the amazing Type 1 community. Join us on this journey as we learn, support, and grow together.
Type One Unscripted: Type 1 Diabetes
04. Adapting to Adult Onset T1D
Picture this: you've just crossed the 30-year threshold and life seems to be unfolding as planned. Then, you're thrown a curveball - a diagnosis of adult onset type 1 diabetes. This week, we welcome Rachel Young to share her compelling journey, from the initial shock of diagnosis to the day-to-day realities of managing this condition.
Life after an abrupt diagnosis can be overwhelming, filled with unfamiliar medical terms and treatments, not to mention the unpredictable changes in your body. But Rachel, with her refreshing honesty, guides us through the labyrinth of type 1 diabetes. We dissect complex concepts like bolus and basal insulin, carb ratios, and CGMs, and discuss the terrifying unpredictability of the 'honeymoon phase'. Yet, we also touch on the relatable - managing blood sugars at work, maintaining a healthy relationship with food, and the need to advocate for oneself.
However, it's not just about the medical side of things. We explore the emotional aspect too, the impact on relationships and the importance of support groups. We debunk some common diabetes myths and emphasize the need for education and understanding. As we wrap up, we revisit Rachel's journey, reminding ourselves that amid life’s unexpected challenges, we can still find joy and resilience. So, join us as we traverse the highs and lows of living with type 1 diabetes and discover the strength in every story.
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Welcome to the Type 1 Unscripted Podcast. My name is Sean and we are pulling back the curtain on the true experiences of life with type 1 diabetes. Together, we will explore the highs and lows of living with type 1, sharing stories of inspiration and triumph, educating and learning and, most importantly, fostering our amazing type 1 community. As a reminder, anything you hear on the Type 1 Unscripted Podcast, or any episode, should not be taken as medical advice. So before making any changes to your diet, insulin or health care plan, please consult with your physician or medical professional.
Speaker 1:Welcome to another episode of Type 1 Unscripted and bear with me everyone. I have been under the weather with a nasty cold and I feel like if we didn't make this happen today, it wouldn't have happened. So here we are, and today's episode topic is really cool because we're talking about the adult onset of type 1 diabetes and the impact that it can have on your life and everybody around you. And today on the show we have Rachel Young. Rachel and I met on TikTok and now we are in a support group together and she has an amazing story, so I'm really excited for her to share that with you guys. So, rachel, thank you for being on the show.
Speaker 2:Thanks for having me, Sean.
Speaker 1:You are very welcome. I am really excited to hear your story. I just shared mine a couple of episodes ago, where I was misdiagnosed as a type 2 diabetic, but you were not. From my understanding, you were just diagnosed as a type 1 in your adult years. So tell us a little bit about that.
Speaker 2:I would love to. So it all sort of begins I say sort of in 2022. My mother actually passed away in February of 2022 from complications due to diabetes and within four months I was in an ICU myself getting my type 1 diagnosis. I noticed that I lost a significant amount of weight in a very short period of time and I had an endocrinologist appointment in late April, early May, and I said, hey, this seems a little unusual. And the nurse just looked at me and she's like man. I wish I could do that, and that was the extent of anyone checking into this very early symptom.
Speaker 2:Fast forward to May, I'm taking care of family who just had surgery and I'm drinking everything in sight, like just the supernatural thirst that you can't slake, and I was starving all the time. Obviously, I had to go to the bathroom all the time for drinking so much, my head hurt and I was irritable and I kind of joked with my husband at the time. I'm like man. I really hope I don't have diabetes. That would be unfortunate, but there was no sense of urgency because there's honestly a little bit of confusion that goes along with having such high blood sugar for a very long period of time you don't often think of diabetes as a very serious illness, like, oh, I'll get myself to a doctor. If that's the case, we'll take care of its spine.
Speaker 2:So in June I went with my husband to a conference and a friend of ours was sitting with us at a banquet. He's talking about how he was recently diagnosed with diabetes and he's going down his list of symptoms. He's like, yeah, I had to drink a whole lot and all these things. I was like, oh no, oh dear. Well, that all sounds painfully familiar, so I should probably see a doctor when I get home. Well, we made the trip home. I had pizza and everything that I could possibly get my hands on to drink on the way home and I felt horrendous. I always tell my husband it's scary sick and I'm like I need to do something about this.
Speaker 1:Okay, so did you have an idea that it was your blood sugar, though?
Speaker 2:I did. At that point, after hearing somebody say, hear my symptoms and I was just diagnosed with diabetes, I'm like, okay, well, I feel this way and I'm willing to bet it's my blood sugar. And I had a glucometer and it's like why would you have a glucometer if you don't have diabetes? Well, for the year before that occurred, I'd been having terrible hypoglycemia and it was something that I was telling my doctors like this doesn't seem normal. Like no, just don't eat carbs. Okay, well, if I almost pass out on the stairs after eating chicken breast and some normal vegetables, is that still okay? Well, I never got any answers and because I'm a little sassy, I'm like I'll show you, I'm going to go and I'm going to get glucometer, which I did.
Speaker 2:So I read the back of the box and I noticed that that was significantly outside of the range of what is normal and what is not. And I didn't think to myself ah, I should get to a hospital. I was just thinking you know, I'll take care of it tomorrow, I'll head to the local urgent care. And that's exactly what I did. So I got up the next day, I excused myself from the work that I was doing and said I'm here for a diabetes screening because I think I have diabetes. They did all the appropriate blood work. The nurse practitioner comes in, she slams it on the table and she goes you're a hot mess.
Speaker 1:That's the confirmation you wait to hear is that you are a hot mess, yep.
Speaker 2:I was like, well, yes, but why do you think so? And she was like, ah, yeah, well, you definitely have diabetes and your blood sugar is. It was still 490. So they gave me a bag of fluids and sent me home.
Speaker 1:Now, did you have a high A1C at this point at all?
Speaker 2:Oh yeah yeah. My A1C at time of diagnosis was 12.7.
Speaker 1:Wow, okay. Well, let me ask you this Before you got your A1C checked at this point in time, when was the last time you had it checked for like a routine physical?
Speaker 2:So the last time prior to that that I got my A1C checked was the year before, in 2021. And it was like a six something. It was on the high end of normal, to the point where they just said, hey, everything looks good, you're fine.
Speaker 1:All right. So how old again were you when you were diagnosed 32. Okay, so the doctor comes in. You're 32 years old. He slaps down a piece of paper and says you have type 1 diabetes. What is going through your mind right now?
Speaker 2:To be fair, they just told me I had diabetes.
Speaker 1:And so I was like so you didn't know it was type 1?.
Speaker 2:I did not.
Speaker 1:Okay, no.
Speaker 2:They did make me see my primary care physician the next day and he started telling me I had type 1. They hadn't run my antibody tests or anything like that. I'm kind of a data oriented person. So when they're like you have type 1. I'm like no, no, no, no. You don't have anything that says I do yet, but they're like no, you do.
Speaker 1:Take my word for it and let's go from there, which we want to be able to do for doctors right, because they are the experts. But I think the problem is the reason we want all these facts and information, because we hear all these horror stories of people who are misdiagnosed in the diabetic world. Maybe it's type two versus type one. Whatever it may be, we can't ask the right questions because we don't know what questions to ask. Right, and I think there are people out there who are familiar with diabetes because they have friends or loved ones, but there are a lot of people who are not. So like, what about? What about you? Like, when you were given this diagnosis, how familiar were you with type one diabetes?
Speaker 2:I knew absolutely nothing, not a bit. And it was funny. Obviously I had to have a stay in the ICU because I had DKA. And when I got there, the doctor on call was like OK, miss, you know the drill. And I was like who Me? No, no, no, no, no, no, no, no. I've been at this 24 hours. I have no idea what's going on here. And the look on his face when he realized that, like I didn't know anything and this was not my first time, or that this was my first time he just kind of got very somber. And the same thing happened to the diabetes educator. She started throwing out all of these words like oh, are you on a slacking scale? What's your carb ratio? You know, what do you give yourself to ballast? And I'm like I know she's trying to speak to me, I just don't know what she's saying.
Speaker 1:Well, you literally are learning a new language, you know. Yeah, like it's kind of like learning Spanish or German for the first time. I know that whenever I was diagnosed, I got bolus and basal backwards all the time. I was constantly googling to see which one was which, and it was so confusing to wrap my head around all of this new terminology. And that's because when you get diagnosed with type one diabetes as an adult, you haven't spent your entire life learning this disease.
Speaker 1:Your everyday life, as you know it changes in the blink of an eye and it really creates what I like to call diagnosis difficulties, if you will. Everything from terminology to maybe it's a new diet and nutrition, maybe it's just the actual part of managing the medical side of the diabetes, right, and it's a lot to take in, it's a lot to learn. But I want to rewind back to the terminology part of it because, like I said before, it's a whole another language and you mentioned carb ratio just a second ago, so talk to me about that. What can adults who are just diagnosed with this can expect? Like, what did you expect?
Speaker 2:For me it was very difficult at first because you don't know what you don't know. It's like you're expected to ask questions You're expected to learn about. How do you learn if you don't even know what you don't know? So you have people asking you about carb ratios and all these things, and I think one of the best examples of how difficult this can be is when I was first, I first started to think about what I was going to be. When I was first, I first started taking insulin and they tell you hey, look at the carbs at the back of the box and you sure scale to tell you like how much insulin you're supposed to have. No one told me to factor in the fiber.
Speaker 1:Oh, wow, okay.
Speaker 2:So that led to a lot of situations where I was giving myself way too much insulin and I was like I don't understand what's wrong. I keep having these terrible lows. And then I got an actual diabetes education class, I think, a month or two after I was diagnosed and they're like yeah, so you factor in the fiber and then you're supposed to have protein and everything after that, and then you know that was a whole new complication. I'm like nobody told me to add protein after I had my low snack to keep up my blood sugar. So it's always just like there's always something new and something different to learn. Oh yeah 100%, 100%.
Speaker 1:Well, let's do this. Let's talk about some of these terms that, as a new diabetic that you might hear. We've already mentioned bolus and basal insulin. You mentioned carb ratios and, unfortunately, dka diabetic ketoacidosis. But you also got CGMs and glucagon and you might see the initials BG, which is blood glucose, which is, I think, a pretty standard one there. But here are two of them that took me a minute to wrap my head around, and that was correction factor and insulin on board, also seen as IOB on your pumps.
Speaker 2:Those. Yeah, I, to be honest. I still have trouble with the notion or idea of insulin on board. I've been at this a year. I have an insulin and yet you know it. Just, it's one of those things where you have to operate as your own pancreas, right. And so trying to think about all of those things in concert with one another and putting a name to it and a formula like it's math. No one told us we'd have to be doing math to keep ourselves alive.
Speaker 1:Well, I purposely chose a career where I didn't have to do math, so. But you know, it's not just about terminology, it's also about the symptoms and what that high blood sugar feels like, what that low blood sugar feels like. And you might already be familiar with the high sugar if you're in the early stages of your diagnosis, because that's what landed you in the ER. But unless you've been put on insulin pump therapy or just insulin therapy in general, you may not know what that low feels like. And that could be a scary thing too. You get the confusion and the shakiness and the sweats, and knowing when to treat it and how to treat it can be a lot to take in and a lot to learn.
Speaker 2:I'm still figuring that out, but I actually have the opposite experience. So because I was more accustomed to hypoglycemic episodes before my diagnosis, I'm more familiar with the symptoms of hypoglycemia as opposed to highs. So when I have high blood sugar, oftentimes I don't feel it or I don't know outside of a headache, and so it's harder for me to know like, oh, maybe, maybe I didn't get enough insulin from my insulin pump initially, you know. But I still sometimes mess up and that's a part of the honeymoon period, right, because we haven't even touched on that yet. But what do you do when your pancreas decides that it wants to work one day and then the next day it doesn't? So it kind of changes your perception and your procedure for how you go about treating those things.
Speaker 1:Oh, yeah, yeah. Well, let's talk about that honeymoon phase for a second, if you don't mind, because I think that anybody who is diagnosed will hear this term, especially the adults. I've been told that adults honeymoon phase can last for up to years. I went through it personally. I think I'm still going through it, if you want me to be honest with you, but it's something that's kind of hard to wrap your head around. You're like you're telling me that my pancreas doesn't work, but it's kind of working, but it's going to slowly stop working and that can change your insulin dosages, it can change how you react to food and it's going to be a very frustrating experience, more than likely. So tell us about that. Tell us a little bit about what the honeymoon phase is.
Speaker 2:For sure. So the honeymoon phase is that period of time after you're initially diagnosed with type 1, where your pancreas is still producing a little bit of its own insulin. It kind of ebbs and flows over time, which makes things very unpredictable at times. One day maybe your body decides it wants to help out, the next maybe not so much, but if you're still giving yourself the same amount of insulin according to your treatment plan, that can have some pretty interesting side effects or consequences. So I was told that I was most likely going to be in a honeymoon period. My first question was like okay, so how long does it last? Is there a way I can extend it? Can you give me any more information? And they're like well, unfortunately we just kind of have to watch and wait and see how long that lasts.
Speaker 1:It could be six months, there could be a year, maybe it's five years, no one knows which can be super scary, because just when you think you have a slight grasp on your diabetic management and I mean slight grasp your world will get wrecked because your pancreas will decide to change things up. For me personally, one time in January my CPAP tide was low, normal, but still kind of within that range. Five months later it was way below normal, my insulin needs changed, the way I reacted to certain foods changed, and it was just this big thing that I went through that. Okay, I thought I had this figured out and now I don't.
Speaker 2:And that's fascinating. You never know how your body is going to respond to these things. When I was diagnosed, I think my CPAP tide was just below the normal reference range and, as we've talked about in the group, I'm highly sensitive to insulin still so at any time. It's wonderful to know that all of that could just disappear.
Speaker 1:In a blink of an eye. Everything's constantly changing with diabetes. There is no normal Like. Even this week I am. I've been fighting a sickness, a cold. You can probably hear a little bit in my voice, but how me being sick this week affects my sugars is different than how I was sick you know, maybe a month ago, or how I will be in a month or two from now if I get sick. Like it's always going to be different. Nothing is ever going to be the same, which kind of leads me to another point I want to talk about, and that's the emotional and psychological impact of being diagnosed as an adult because you have spent your entire life with your way of life, how you do things, your lifestyle, your routines, and now you have to cope with this new normal, this new every day lifestyle, if you will, and that can be pretty difficult to to take in.
Speaker 2:Yeah, overnight, and it's, it's terrifying. It's so much to take on. I mean, we talked about the fact that there are all these terms, there's all this stuff. You are now functioning as one of your organs that is no longer functioning. You know it's so scary. It's scary for you, it's scary for everyone around you. When I was first diagnosed and they approved me for a CGM, I would have lows almost every night at bedtime and in the middle of the night, and what that represented terrified my husband and I. I mean, we all know. You know you can go to bed and tomorrow is never promised, but there's no greater reminder of that than a little alarm that screams at you that that you need to. Yeah, 2 am.
Speaker 1:Yeah, waking everybody up, everybody up. And I want to talk about the spousal role here in a minute or a family dynamic. But what about the whole emotional stigma of why me, I'm an adult? Isn't this a childhood disease, right? Have you heard that before?
Speaker 2:Oh man, I think I hear that the most every time I say, yeah, I'm type one, I've only been type one for a year, and they're like, whoa, wait a second, that you're born with that, that's a childhood disease. I'm like tell that to 32 year old me.
Speaker 1:So well, it can be a big misconception and we'll do some myth busting a little bit later. That, I think, will be really fun. But this can drain you emotionally, just like lifestyle adjustments, for example diet and nutrition. I don't know about you, rachel, but I changed my diet pretty hard core just because I was afraid of food.
Speaker 2:I did as well, mostly because I was just terrified of carbs. I just I was convinced that if I had sugar, if I had a cookie that you know, my blood sugar was going to go through the roof. There was no way of managing that. And it was particularly difficult before I got the insulin pump. I mean, having to give yourself a shot for every single thing that you eat makes you like hyper aware of what it is that you're eating. I really dug into just ultra healthy. I measured everything with measuring cups. You know almost no carbs and it was exhausting. It took such a mental toll, especially because I had dealt with anorexia when I was younger and so having to count, you know, all of your carbs. I was told by the diabetic educators like you should have 1400 calories a day.
Speaker 2:And I'm like how do I do this? Yeah, which is not a lot. It is not a lot.
Speaker 1:Yeah, 1400 calories a day is not a lot. I'm personally on 1800 a day but I'm in a deficit and I'm trying to lose weight and that's just hard to manage, you know. But you mentioned being afraid of carbs, which I think most adults diagnosed with type one will fear this big time because you've spent your entire life eating carbs. Now you're like, oh my gosh, carbs, blood sugar, I can't have all the things that I love, like pasta and sweets and, you know, bread and all the stuff. Like for me. I gave up. Why didn't give up milk? I changed it out for a healthier alternative like fair life milk, which you know isn't really milk. But that's neither here or there. This is a lot for people to take in and people will begin to fear carbs.
Speaker 2:Yeah, and that was certainly my case a lot up front. You know, anytime I attempted to have carbs or I attempted to dose for the carbs, I was going low and so I was like I just can't do this. Not to mention, I was just like carbohydrates are sugar, sugar, bad. All of my favorite foods are sugar and carbs. So I was so unhappy, thinking like, oh, I can't have honey. I taught myself how to make French macarons during the pandemic and I'm like I guess I can eat them now. That's depressing.
Speaker 1:Well, it's funny because we eventually learn that we can eat these foods, even though someone out there may say, hey, you can't eat that cookie or a piece of cake. But you know we can and we just need to learn that healthy relationship with the food and give ourselves the insulin that we need for it, which I know is easier said than done, but we try our best, I believe, Rachel. Let's talk about the workplace for a second and what that looks like when you are diagnosed as type one diabetes as an adult, because we have to also manage our professional career and I know firsthand how stressful this can be, because you're worried about the conversations with your boss and your colleagues and what happens when you have a low blood sugar event in the workplace and the anxiety that this can bring on.
Speaker 2:Yeah, I could definitely see that as well, and I work from home as a digital marketing freelancer, so typically when I see people or I interact with people, I'm on Zoom and the anxiety I get from watching my blood sugar just decline while I'm trying to give a report or presentation, knowing that at some point either the alarm's gonna sound or I'm gonna have to tell people like oh, I'm so sorry, I need to go camera off for a second so I can have a low blood sugar snack.
Speaker 2:It's just this whole scenario where you're like I don't want to be dealing with this, I don't want other people to maybe have to deal with it. Sometimes too, it's kind of like you were discussing, like hiding your diagnosis in your last episode. What do you do when you don't necessarily want to have to bring it up, but you do anyway.
Speaker 1:You know like which goes to the whole thing of advocating for yourself and educating others around you for your safety, which can be really, really important. And but it's funny you brought that story up a minute ago because I'm a wedding DJ and every now and then we do these bridal shows or bridal expos where couples will come around and talk to us about hiring us for their wedding. And this guy came up to me and we were sitting there talking and I just felt my blood sugar tanking. I'm trying to focus on him and give him every amount of attention that I possibly can until I couldn't know more and I put my hand on his shoulder and was like man, I am so sorry, but I'm a diabetic and my blood sugar is dropping. I'm just having trouble to focus right now. Just give me a quick second, I'm going to get something to drink. And he goes oh wait, really I'm a diabetic too. I'm a tight point as well. No way. Yeah, it was really cool because it was a cool connection and in that moment he understood and he was able to relate to me.
Speaker 1:But we all know that that's not a perfect world and that isn't a likely scenario most of the time. And if you're an adult who has been diagnosed with type 1 in the workplace. It is very important to have these conversations about what can happen in case of a low blood sugar, how to treat it. If you have a glucagon kit near you, how they can get to it and what to do with it, because this will save your life. Anybody around you on a daily basis or frequently should be made aware of this information.
Speaker 2:I've even had this conversation with my local baristas. I go and I work my way around myself yeah basically, you know you can work from home, you work from anywhere, and they've heard my CGM go off and you know they're standing there and they're like what is that? And they're like, oh OK. So I guess now is when we're having that talk. Here's what that means You'll likely never have to deal with it, but if you did, here's what you need to.
Speaker 1:Well, it's a lot to wrap your head around and it can really take a toll on you. And we talked about the diet, nutrition changes and the changes in the workplace. But for me personally, one of the hardest things that's weighed down on me is the actual management of the diabetes, the medical side of it. I'm talking the insulin therapy, whether it's a pump or MDI, the CGMs, the constant monitoring and even the regular endocrinology appointments. I don't know about you, but I go every three months.
Speaker 2:I actually see my endocrinologist every six months, so now I'm fighting.
Speaker 1:Oh, six months status Nice yeah, I'm not in the pro-vation, so You'll get there. I'll get there, that's what I'm talking about.
Speaker 1:Well, let's do this. Let's talk about family dynamics for a second, because we spent some time talking about how your life is changing and will change, and that is 100 percent true, but what you may not realize is that your family's roles are changing too. Everybody around you's life will be impacted by this, and it's not a bad thing. This is something that we have to be aware of and take into account. So, for example, your spouse, your parents, your children, maybe your in-laws or whoever it may be they now have these learning curves that they are dealing with too, and they may have burnout as well, and maybe it's just the initial shock factor. So, rachel, how about your husband? How did he handle hearing that you now have type 1 diabetes and this is a lifelong thing?
Speaker 2:I think he was terrified. We had just gone from being at a conference together. We were going to banquets, dressing up, having a good time, everything was great, and then there we were in an ER and then an ICU and they're telling me oh, here's this diagnosis that's going to change every aspect of your life forever. He was afraid of losing me because I was eating carefree, having sugar, drinking, all these things and the sinking realization of what could have happened if I hadn't presented myself for a screening when I did kind of hit and then we transitioned into all of the stuff. He's watching me give myself shots for the first time. I'm teaching him how to give it to me if he needed to. He's hearing alarms at 2 AM saying that I need sugar, stat.
Speaker 1:Well, nobody will sleep in the house ever again. When those alarms go off at 2 AM, everybody gets that alert. Well, let me ask you this who was more in shock about your diagnosis? Was it you or was it him?
Speaker 2:I think it was him, honestly that's true love, that's true love, right.
Speaker 2:Yeah, I just gotten kind of accustomed to feeling kind of sick. I already had one autoimmune disease. I was diagnosed with Hashimoto's in 2019. And so I knew something had been wrong. I was sick At the time. I think I was just too sick to fully take in what that meant. So there I am laying in a hospital bed being like okay, I guess I'll cross that bridge, the next bridge when I get to it, and the next bridge and the next bridge. So each and every time something changes, I'm just like, oh all right, here's the next thing.
Speaker 1:Here's the next thing. Well, you mentioned a moment ago that you had to teach him. You had to educate him, and I find this to be really important because we have to educate those around us. Like I mentioned about the workplace, our family is going through a learning curve and it's a lot for them to take in, and I think a lot of patients goes a long way. I struggle with this because I want them to be able to see what it's like to be in my shoes, even though it's not really possible for that to happen. But what about you guys? Were you able to do any educational classes together, or was it something you just kind of learned as you went?
Speaker 2:Unfortunately not. No, the amount of education and resources there are for type one adults and type one couples and their spouses very minimal. So I was sent alone to a diabetes educator about a month or two after my diagnosis and that was basically it.
Speaker 1:Well, yeah, I think mine was very similar. I had a 45 minutes to maybe an hour education session with my diabetic educator and, yes, you can always make more appointments and you can have conversations after the fact, but you're not going to think of all of the questions right there upfront. You're going to get in your car, you're going to be halfway home and you're going to go. Man, I should have asked that question or that question or that question Because, again, you could have the conversations after the fact, like we use my chart and I can send them a message and they can reply, but sometimes that takes a day and then. But you want to answer now, you want to know now, because you're stressed and your anxiety is through the roof and it's just a lot to take in and I think that everybody around you should be well educated when you're dealing with type one diabetes.
Speaker 2:Absolutely. It's important so that they understand. It's important for your safety. It's just generally important, and you mentioned earlier that that extends to even just people that you know, your friends, people that you might be acquainted with. I had a friend who saw me have a low for the first time. They didn't know what to do about it and they told me afterwards to like I was so afraid seeing you that disoriented. I've never seen you like that before and I didn't know what to do. So I'm so glad that you know what to do and that your friend knows what to do.
Speaker 1:Well, this goes back to the whole thing of making sure that everyone around you is educated and they know what to do in a dangerous or scary situation, and it's key to your overall health and safety. And one of those things is that now you, instead of being this caregiver, you are now being a care receiver. Some people are very independent. They don't like that feeling of people taking care of them and they will kind of keep themselves shut off from having that happen.
Speaker 2:I guess, if you will, I am one of those people, so I'm glad that you bring that up. You know, like you said, it's hard if you are used to taking care of people around you, because I often Find myself doing that and then when I need people to take care of me, I hate it. And you know, when you've got your aunt coming and trying to shove a spoonful of sugar in your mouth as a grown adult, you're like it makes the medicine go down. Oh yeah, yeah, that actually happened at my aunt's house.
Speaker 1:Well, yeah, there are so many Dynamics that change. Let's take the kids, for example. My kids are five and seven. I know you don't have any. Maybe you will one day.
Speaker 1:I don't know what your plan is, but my kids are still fairly young, and just the idea of Having to sit down with them and explain to them what can happen if they find daddy on the floor and he's asleep and they can't wake him up, that's, that's scary to think about. But they need to be able to recognize that and Understand. They need to get you know my phone, unlock it, call 911 and explain to them exactly what they see. Understanding that blood sugar has a fact to play with this. It's a lot to teach young children, but those conversations are vital, not with just the kids, but even the spouses too. Right, those dynamics are different because they are wanting to support you and they're trying, but they don't know what it's like to walk In your shoes. They will never completely understand. And then you got parents and grandparents and the whole nine, and Conversations of this nature are just a must. It's got to happen.
Speaker 2:Absolutely. I. You have to be able to talk about it, and even even when you can talk about it with your family, with your spouse, it's still somehow very lonely. I can't imagine not being able to, to be able to have those conversations and to be able to say, you know, like what happened the other night, I'm having really high blood sugar. I I don't know what's up. I think it's my infusion set. He having him know what that means, what the consequences of that are, what it means if I'm high for multiple hours at a time, that's all so important.
Speaker 2:Like we said before, oh yeah to safety, but also to your own mental health.
Speaker 1:Well, like you said, open dialogue is Incredibly necessary and the conversations must be had. Here is a Real-life example of something I went through this week with me my wife. It's that's in bad against her, I promise she's probably like. I can't believe you're talking about me right now, but this week I've been sick and I have had blood sugars through the roof and it's been very challenging. I've been cranky, I've been very grumpy and I've also been giving myself a little extra insulin on my boluses to protect me from the More increased spikes that I would not normally have if I was just, you know, normal and not sick. And then the other night I had a low blood sugar about 3 am. I woke her up, I said I was going downstairs to get a snack and the response was well, that's probably because you bolus too much, and like that's the last thing that I want to hear right now, even though that's probably true in my head.
Speaker 1:You know I made the decisions that I made and I they all made sense to me, right? But it's not just within the house, it's outside of the home too. Maybe you're going to a family event and A meal has been prepared for a lot of people and it feels like they didn't really take you into consideration, because you get there and it's carbs, carbs, carbs, carbs, carbs. And yes, we can have the carbs, but for some people, you know, they don't want to eat all the carbs, they don't feel comfortable giving themselves this mass amount of insulin because maybe they're sensitive to it or whatever it may be, and you don't want to be that guy or that girl who feels like you're being needy, but you're also are still taking care of yourself. You still have to Advocate for yourself.
Speaker 2:Oh, absolutely. I have had those experiences too, where you know you're going over to you with your in-laws for Thanksgiving and they're like oh, Would you like brown sugar on your sweep? I mean I could.
Speaker 1:Well, this, this Thanksgiving, will be my first Thanksgiving with full-on insulin therapy. I was on Just bolus insulin last year and it wasn't even that much, but now I'm on a pump and it's just full-on therapy and We'll be curious to see how this goes with the rest of the family. But you know open dialogue, right? Well, let's talk about daily routines for a second and how all of that has changed meal planning, workout routines, emergency preparedness, all of the goods, because I believe, again, you know, not just for the person but for the family, major changes are happening here. It's just Everybody's having to do something different now, and it can be a lot. So how about your husband? How did he react to all of the changes? Was he supportive? Was it a lot for him to take in? Did it increase his anxiety? Tell me a little bit about that.
Speaker 2:Sometimes it's easier than others. I can't have gluten. I have a gluten intolerance, and so we were already kind of used to like picking locations to eat, finding food and that being a difficulty, so that really wasn't big for us. But being a part for things like exercise, I like to go for walks and oftentimes I'm going for a walk when he's at work or he's not available and and inevitably almost every time I have a low, and then I'm getting frantic messages, calls like where are you send me pictures like are you okay?
Speaker 1:Oh, I can relate 100%. I I think it's been a few weeks now, but I was in the gym working out and I had a low. I didn't even realize it. I had music going on. I don't think I even heard my alarm go off and I get a phone call after phone call. Until I answer. What's going on? Are you okay? I'm like, yeah, I'm fine. I honestly I feel fine, but I'm gonna go take a snack now and it's just they care and they want to be there for you and that's amazing. I love that. I was just watching the TikTok video the other day of an account that I follow and this person is off at college and she was like what happens when you have a low and your parents can't get a hold of you? So they call campus security?
Speaker 1:and they come check on you. You know like that's, that's real life, that's what we do is, and there's nothing wrong with that and again, I know I'm probably sounding like a broken record at this point, but it's just. I think we all struggle with this whole idea of I wish they could just one day Feel what it's like for one day and they might understand a little bit better. And the reality is that's not possible.
Speaker 2:We don't want that to be possible because we don't want them to have type 1 diabetes, but I feel like we think that it just might be easier on everybody if we all knew what it's felt like definitely and, like you said, they're they're never going to fully understand, and I think the the best that you can can hope for is a Cognitive understanding of what it is that you're going through and then compassion for what it is that you're going through. I know because I experienced frequent lows. Uh, dealing with the symptoms of lows are very hard, you know. You can become irritable, you can come snappy because your body is basically saying I need sugar, or I'm going down and Trying to communicate that to somebody who's never experienced it is hard and they're the ones I have to.
Speaker 1:Oh yeah and and this is important to because I think that this gives us the opportunity to encourage our family or our loved ones to also join support groups. Support is is key here, not just for you yourself, as a type 1 diabetic, because you're learning all this new stuff All at once, but for the family as well, because they are. There are support groups for caregivers in the type 1 diabetic world. People who have been helping others manage their diabetes for years can help others learn and learn how to maybe even relate to just a little bit. And support is Something you're going to hear me talk about time and time again, if not on every podcast that I do, because I believe that there is no amount of Support that is too much, and I think it's something that we really, really need.
Speaker 1:There are multiple ways to do this. There's online support, social media that's how, again, rachel and I met each other, and then we created a support group on the discord app and there are local support groups as well, like get involved, find one out there and be a part of it. It's super, super important. So, rachel, tell me your perspective on this. Like why do you believe that support groups, especially for Someone who is of adult age. They just got hit with this diagnosis. How can this be helpful?
Speaker 2:Absolutely. First and foremost, as an adult who is diagnosed, I didn't know anybody with type 1. I Certainly didn't know any adults with type 1. I knew some friends who had type 2 and you know how they manage their conditions, very different than how I manage mine. It was so isolating I I just have this. It's like Like having your own personal rain cloud that nobody understands, you know, and You're holding an umbrella kind of like you're we the poo.
Speaker 2:Yeah, you're holding an umbrella, no one knows why or what to do or anything else. And so being able to speak to other people who actually understand what it's like to have everything about your life changed, to Having to worry about every little thing, to knowing how that affects your loved ones, even just being able to talk about the, the gear that you have on you 24 seven that you Don't get to talk to anybody else about it's it's so important. It's been very helpful.
Speaker 1:Oh, I can resonate with this 100% because in the diabetic Gear worlds I'm a tech person, I'm a gear nerd. So you know, I love to talk about this stuff but my family they could, they could care less, you know, like they don't care to hear about all that stuff, but I love to talk about it and I wish I had more people to talk about it with, about, you know, like pumps and new technology and the CGM's and People. Just you know, they don't know, they don't care and they don't care about what they don't know. So, like the other day somebody asked me if my insulin pump was a nicotine patch. Like you know, you never know what someone's going to say. Well, just kind of why it's fun to have those people you can resonate with.
Speaker 1:You remember me talking about that groom that I met earlier and that was neat because after I got my sugar up, we could talk about that stuff. We were, you know, he's on the tandem T slim. I think, kind of like you are, I'm on the Omnipod 5 and we do got to like have this conversation about pumps and glucose monitors and like, hey, what's your correction factor, what's your carb ratio? This is mine, and like we got to be diabetic nerds and diabetes for a minute, which that was one of the first times I ever got to experience that, which I loved. It was so cool and it was so fun and it gives you that sense of the idea that you're just not alone. And it kind of takes that rain cloud you know that you mentioned earlier and makes it, you know, not so rainy.
Speaker 1:Little Sun poking through there, yeah, yeah, a little, a little Sun poking through. Well, rachel, before we go I want to do something fun. Earlier I mentioned that we were going to do some debunking and some myth-busting, because you know, when you're diagnosed with diabetes as an adult, that I know we're saying that a lot. That's our focus here today. You will probably hear a lot of these. In fact, you may have even thought some yourself because maybe you weren't properly educated and we're going to knock some of these out and have some fun with it. So, number one only Only children are diagnosed with type 1 diabetes and the term that goes along with it, juvenile diabetes.
Speaker 2:That is completely false, not true clearly, or we are very, very big children.
Speaker 1:Yeah, we are not Tom Hanks in the movie big right, like that's not. That's not reality. Okay, so number two, this one is a big one. You will get type 1 diabetes from eating too much sugar. This will get said to you a lot, a lot at least once.
Speaker 1:Yes, at least once, and you probably shouldn't have had too many sweets as a teenager. Or you eat too many cookies, or you have way too much. You know cake. Whatever it may be, I promise you it has nothing to do with this. It does not. I will say it again for the people in the back it does not All right. So, number three you have type 1 diabetes because you are overweight. Not true, because I was actually misdiagnosed with type 2 diabetes Because I was assumed to be overweight in relation to my age. So I will say this very clearly your weight is not the reason you have type 1 diabetes or anyone has type 1 diabetes. In fact, rachel, you lost weight when you were diagnosed.
Speaker 2:Yeah, at the time of my diagnosis, I was just over a hundred pounds. I I lost 20% of my body weight and I Was practically my my clothes wouldn't fit.
Speaker 1:so, yeah, definitely, definitely, not some people are very angry to hear this right now.
Speaker 2:Yeah.
Speaker 1:Okay, so here's one. Number four is that you can outgrow it or work hard to reverse it Again. That is false. Type 2 diabetes can be reversed, but type 1 cannot. You are Stuck with it for the rest of your life. As sucky as that is, that is the harsh reality of it. You can't. You can't fix it, unfortunately.
Speaker 2:Yeah, if only. But as far as I know, we can't regrow those B cells in our pancreas. There's there's no amount of salad that's going to reverse.
Speaker 1:No type 1 come on, pancreas.
Speaker 1:If only get your act together, come on now, all right. So number five, and this one is a good one. I mean it's not good because you know it's not true, but I can see where somebody might think this a little bit. But let's bust this myth right now. If you don't need insulin immediately, it's not type 1. Yeah, I could see people saying that hey well, you don't need insulin, so it's obviously not type 1 diabetes, because type 1 diabetics need insulin. I mean, this goes back to what we said earlier about the honeymoon phase, right?
Speaker 1:Yeah like, if you don't need insulin at this point in time, you will. You will. It is that your needs for it now are Not as much or not at all, but I promise you that day will come, and and it does not have anything to do with you being a type 1 diabetic or not. So, rachel, as we end this episode, what advice could you give someone who maybe they're newly diagnosed with type 1 diabetes in their adult years, or Then maybe have been doing this for a year or two? What advice could you give them as they manage this new daily lifestyle?
Speaker 2:Honestly, I think my, my biggest advice is that everything in moderation right. Don't don't be afraid of carbs, don't give up everything that you love. Everything works typically in moderation right. So if you feel like you just have to do a complete 180 and change everything, that's way more daunting than making small changes, moderate changes and and, of course, it gets better. I Promise that if it seems overwhelming, it seems like a lot, seems like you're having to change your whole life. It does get better. Sometimes it gets worse and then it gets better. So it Trial and error. Like you said, no one, there's no one-size-fits-all approach to everyone's diabetes, but If you hang in there, you're gonna get the hang of it, you know.
Speaker 1:I would say that my Emotional roller coaster sometimes is like my CGM chart Up and down, up and down, and you know what that's okay Like. It's okay to have those emotions. And you know, even on tiktok, on some of the videos that I post about Some of the refer days that I have, the number one comment that I see the most is hang in there, it's going to get better and I whole heartedly believe that it will. I believe that there is no normal and that there still will be hard times, but I do believe that, yeah, it will get better. And the one thing that I love is that the type one diabetic community is just so amazing and they're so loving and supportive and I don't think I really knew how to Great the type one community really was. What about yourself?
Speaker 2:I didn't like a lot of people. You know, you see the support for children, for young adults and their families, but I I wasn't aware that there was a really strong adult type one community and other adults who are going through the same thing. So it's been wonderful to get that. So it's been wonderful to be able to connect with all those people, connect with you, connect with the people in the group and Be able to help, support others and also receive that support myself.
Speaker 1:So Perfectly said in that right there. I think it's a great way to end this episode. Rachel, thank you so much for being on the show and for those of you listening. If you enjoyed Listening to Rachel and her wisdom and everything, I promise you we will get her back. It took her a lot to get her on the show, but you know we're here and, rachel, you did a fantastic job. But once again, thank you so much for sharing your story with all of us. Well, as we end this amazing episode, I want you to remember that life has a way of reshuffling all of the cards that we have been dealt with from time to time. However, your journey is a testament to your strengths and your adaptation and your overall Human spirit. So keep learning, keep growing and remember that you are never alone on this path. So maybe raise a glass and here's to redefining and rediscovering life, even if it's just one glucose check at a time. Stay inspired everybody. I love you guys and I will see you on the next episode.
