Diabetes Unscripted
Creating a community for folks living Type1 diabete to learn and grow from one and other. Because until there's a cure there's a community.
Diabetes Unscripted
S1E7: Success Stories in Managing Type 1 Diabetes
What if managing type 1 diabetes was about living your best life rather than just hitting clinical targets? Join us as we explore this empowering perspective with our insightful guests, who redefine success in diabetes management. Together, we journey through personal stories that highlight the everyday victories and challenges, illustrating how community support, strong personal relationships, and cutting-edge technology can transform the experience of living with diabetes. Discover how staying active and connected with a supportive network can enhance well-being, ultimately framing success as leading a life unhampered by diabetes.
Gain practical strategies and a fresh mindset for managing type 1 diabetes with less effort and more ease. Our guests share valuable techniques, such as microdosing insulin for smoother blood sugar control, and emphasize the power of resilience and positivity in overcoming setbacks. We also highlight the importance of staying informed about the latest advancements and leveraging tools like Dexcom data sharing with friends. By maintaining a sense of normalcy and continuity, even after a diabetes diagnosis, our guests demonstrate that success is a multifaceted journey toward a balanced, enriched life. Tune in to be inspired and equipped with insights for your own path to health.
You're listening to Diabetes Unscripted, where we are focused on creating a platform for people living with diabetes to share, learn and support one another, because until there's a cure, there's a community. Hi folks, thank you for joining this week's episode. Today, we're going to be talking about whether or not these folks that we interviewed for the season feel successful in managing their diabetes. It's very interesting. There's some common threads throughout the answers, and then there's some very unique kind of golden nuggets that I'll highlight at the end. So, without further ado, here's some of the answers that we got from our candidates when asked whether or not they felt they were successful at managing their T1D. I will put a spoiler alert in there they do all feel as though they're successful.
Speaker 2:Successful. I think that all of us feel we can do relatively better, because it's kind of like a never-ending journey and struggle. That being said, do I personally feel I'm successful? And that answer would be yes. Why do I personally feel I'm successful? And that answer would be yes. Why do I say that I'm successful? It's because I'm able to do the things that I want to do, and that's what makes it successful.
Speaker 2:It's not my A1C, it's not what I can eat or what I can't eat or anything like that. It's successful because, thank goodness, I've been able to drive my car, go to work every day, raise a family, be married, have a job, manage the stresses of life, manage illnesses of life and still come out, not go in the hospital, generally staying healthy and continuing to exercise and do the right thing as much as possible. Now again, could I be better? Could I eat less fast food? Could I exercise more daily?
Speaker 2:Of course, but like in general, the things I contribute to being successful, I just staying on top of it with regard to my insulin management, my diet management and my exercise management, and I think for most people with diabetes, those are the keys to being successful, and I know some people measure their success by their hemoglobin A1c or now their average time and range. Those are all beautiful and lovely things and markers that we have to acknowledge as people with type 1 diabetes, but diabetes is a marathon, not a sprint, and so to get myself hung up and think a number is catastrophic, or a percentage of time and range, or like an A1C of 7.3 is so much worse than an A1C of 6.6, is not like a realistic to judge my success. That's the thing that people with type one diabetes often lose track of. The success is really in are you doing what you want in life? Are you able to get from point A to point B? Are you feeling well? That's the success.
Speaker 3:I do feel that I am successful and I contribute my success to the friends that I have through Camp Medaicha. You know just other people with diabetes. I would say that I am competitive and when I was younger I would not consider myself a very well-controlled diabetic and my doctors have told me that. But with saying that I'm lucky with the health that I have today and I contribute that to being very active in sports. As I got older you learn things and with that I would say Camp Medaicha community is definitely a huge part of my success because if I have questions or just something, I want to run past people. There's basically five to six people that I have on speed dial that I can talk to about what I'm going through and their thoughts to correct any issues I may have.
Speaker 3:I think of success as far as quality of life and complications with my diabetes now where my A1c is my current A1c is 6.0 and when I was younger it was over 10. And just as far as the success I've had also deals with the technology that we now have. We now have. I'll share an example of going to an endo appointment about my two times back. I go in there hoping my A1C was going to be around seven kind of expecting 7.5, just because there's times that the wheels fall off and we do things we shouldn't. And when my A1C was taken it was I think it was 6.4. And I chuckled because I asked my endo. I would have guessed that it would have been around seven and he politely said that's what technology does for us. So you know, when I, when I look at the success, it's definitely the friends that I've made the community, diabetic community, and part of that is technology, um, in which I learned a lot from that community.
Speaker 4:Success is kind of like a funny word, honestly, when it comes to diabetes, because everyone really does handle it differently. Me being diagnosed so young, I think the biggest part of my success is probably from my parents and my support system. They took a lot of the burden off of me when I was three years old, although I, up till probably 10 years old, I really didn't focus on my diabetes up until that point. They handled site changes, counted my carbs, put my insulin in, took care of me when I wasn't feeling good, checked my blood sugar every 10 minutes all the things that I really didn't have to do, which was really special. But as they were doing that, they also taught me what was happening. So if my mom gave me a squirt of insulin after having pancakes, she would say, hey, let me know how you feel after this, because we don't really know how much insulin you need because we never had these pancakes before. So that was really helpful because it got me to be in tune with my body. So I feel like my success also comes from just listening to my body. I don't think everybody else kind of has that, but with type 1 diabetes we know what we feel like and we know that technology can be really helpful at times, but also really not helpful at times. So I think it's just kind of keeping in tune with yourself and understanding that diabetes is there but it's not what defines you, and not overtreating too.
Speaker 4:I think that was a really hard one. But the older I get, the more I realized that when you have a low you don't always need to eat the entire pantry, because then you're just going to go off in a spiral for the rest of the day. So does it feel good in the moment? For sure, I think that's a big part of my success too is just kind of knowing what I need at that moment and understanding that what you might feel too also could end up being bad. If you give yourself all those cravings or you don't take care of yourself. If you're really high, then the rest of the day is going to look bad for you.
Speaker 4:Um, so we do something called micro dosing in our house, where if we need some insulin, we'll just put a little bit of insulin in and then kind of see how it's working. So then you're not overdoing it. If you're coming down from a high or same goes for having a low have a little bit of sugar, a couple glucose tabs and then see how you're coming down from a high, or same goes for having a low. Have a little bit of sugar, couple glucose tabs and then see how you're doing and put a little bit more in. So I think that's a huge part of success. I think you have to make sure you're checking in with yourself as you're taking care of it, because if you just do that all at once and you just eat everything or you put in 20 units, it's not going to be pretty.
Speaker 5:So one of the things that I find challenging just with the pace of life, we have a lot of forces pulling our energy and attention in different directions at the same time, and diabetes sometimes can take a back seat. And I'll give you a specific example. So for work, I drive quite a bit and there'll be times where I'm driving and the pump or my Dexcom is going off in my pocket. I know it is, but I won't always, you know, pull over and check to see what's happening. And when I don't, I always regret it because you know the sooner you take corrective action, the less damage control you have to do on it. You know the shorter the issue is going to last, ok, so every time I delay it, I regret doing so. So I'm taking trying to be more conscious about pausing whatever else I'm thinking about or doing and taking 20 seconds to see what the heck's going on glycemically, so I can address it, because it's just smart, it's a smart way to live. Yeah, so in times like that, I think, like you had indicated, it can feel like we're in elementary school and it's a report card and you feel yes, you feel I don't know shame is not the right word but just kind of embarrassed Like dude, I could have done better, and this, from whatever glycemically has been underwhelming, is important. This is a marathon and it's challenging. So keeping your expectations reasonable, giving yourself some grace when things don't go well, because that's just emblematic of the disease that we have, you know, like stuff is going to go wrong, but try it like you indicated, try to learn from things. Try, you know, be teachable. Don't be bullheaded or resentful. It doesn't work well long-term, like it's exhausting one. It depletes your quality of life if you approach it in a negative way. Yes, I think of primary importance is kind of your attitude as you approach this. I mean it's a persistent disease, of course, and you could either view it, you could also view it as unrelenting, but I think you know we create in our minds these narratives, these stories, right, that we're the player in, and I think it is important to be constructive in the story that you're telling yourself, also keeping expectations realistic to avoid feeling defeated. So, starting off, I saw this at a presentation by Dr Bill Polonsky. He's a diabetes psychologist in essence, focusing on diabetes disease state and the psychology of it, and I think that's I love what he does because in my opinion, diabetes is, of course, a medical issue, but it's managed behaviorally primarily Okay. So he will start off presentations, putting up on a digital screen.
Speaker 5:True or false, diabetes is leading cause of blindness, amputation and kidney disease. And whether you're in the medical field or you're not, most people have seen that public service announcement and they will say, yeah, that's true, yeah, diabetes causes those things. But he is he's more specific about it. He corrects that statement because it's not diabetes that causes those things, it's poorly managed diabetes. The fact that I have diabetes, I can do nothing about that. Right, I've got it. You've got it. People listening have it Okay. Got it. People listening, have it Okay. And if you believe that statement to be true at face value, that's a problem because psychologically you make a connection, you put yourself on that road to those things. But it's not. But it's not true.
Speaker 5:I can and I can certainly do something about how well I manage it, so I try to keep that in mind in. Also. In my opinion, you know, well-managed diabetes allows you to move it from a central focus in your life to to the kind of the periphery right when I don't want to be thinking about it all the time I want to think about it, as you know, the least amount possible, okay. But in order for me to do that, I need to manage it very well. So I try to develop patterns of management so it doesn't involve, you know, a ton of conscious thought. I try not to beat myself up when things go wrong, because they will. It's the nature of the disease, and I make efforts not to resent it. I really don't.
Speaker 5:I feel like diabetes is like an elevator. In the same way, friends are like elevators. You know they're not leaving you where they found you. They're bringing you up or they're bringing you down. So and it's our choice, you know both who we, what friends we have, behaviors in that sense of our world, but also diabetes wise.
Speaker 5:I think that I know that that, how strong the diabetes community is, it can, without the diabetes community, you can feel very isolated. So I think it's important to lean on the community, to kind of garner new information, also to know that the decisions that you're most comfortable with may not be the best decisions. That comfort can sway us in a bad way. Just because we're used to doing something a certain way doesn't mean that's the best way, mean that's the best way. So I think seeking information, staying up to date with the climate of diabetes care as it develops, because it's developing rapidly, is important.
Speaker 5:So that success is, for me, keeping things realistic, keeping expectations realistic, but just not continuing to try. When you get knocked down, you don't stay down. And also be careful about advice that the diabetes be discerning, not careful. Discerning All the information the diabetes community is providing is not necessarily accurate, especially in social media terms, so it can become an echo chamber. If you want to be negative about it, you're going to get support for that negativity, no problem, but that's not constructive. So just, you know there are times we all get down. I don't want to be unreasonably positive, but you know to stay constructive, you just you got to keep trying, keep trying, yeah.
Speaker 6:I feel like I'm successful. I just find diabetes to be a minor inconvenience in my life. It's nothing that really takes a lot of mental toll. I don't like being high or low, the same as the next person. Of course you know you feel differently physically. You feel different physically, but you know technology makes everything so much easier. I really feel like that's a big piece of this and also I just don't find that I get all that stressed. This is not something that I look at every two minutes of my day. It's something that I look at when I need to look at. I have it pretty ingrained in me. I have food, I take insulin, I eat. That's just been something I've done my whole life. So I think there's a big benefit to being diagnosed when you're young, because you don't have other patterns. So I do feel like that.
Speaker 7:That was helpful so I do feel successful in my diabetes and there's I think there's so many things that have contributed to that, but I would say the thing that has had the biggest contribution would be my attitude around it, and I really believe that you can do the same things that you did prior to your diagnosis as you can after your diagnosis. Just what goes into it and the planning might look a little bit different and maybe you aren't as spontaneous with those last minute decisions, but maybe that's for the better. Anyway, right Like now, you're coming in fully prepared and you're fully stocked on everything that you need and you'll have all your gear with you, but your life can look the same as it did after your diagnosis as well. And then how I would define if that was successful or not I mean A1C, of course, like that's something that could play into it, but it doesn't have to be the only factor that's playing into your success and if you feel that you are able to live life as normal as possible in whatever normal might look like for you. I think that is also a little bit different depending on your situation, but just trying to come back to some normalcy I think is is also a really big determinant on if it was successful for you.
Speaker 7:Um, and then I think another thing too would be um, having a support group has been so helpful in also contributing to my success. I think as well. Um, even if it is just letting people in on what's going on, so like having people on my Dexcom share so I'm a Dexcom user Um, and having all my friends back in college I just graduated has was been extremely helpful post-graduation. I'm just now starting to boot off some of them, but some of my really good friends still want to be on it and they don't even live near me anymore. So I think it's been something that I think has really shown me who is ready to have a friend that has diabetes too, and in a weird way, that's been a good leader to come with, like a lot of I don't want to say like they're like bonus things right, like I'm coming to the table with a few extra things. So I think it's important that you've got such a good group of people around you and that you surround yourself with, but then it's a good weeder too, in a weird way. If that's too much or if they don't want to take it on, that's fine, but I don't know if they would be someone I'd want to surround myself with either. So, yeah, so I would say attitude, yeah.
Speaker 7:Having a good support group and then just trying to live life as similar as to your life was prior to your diagnosis. I think all those things can contribute to your success too. I love that idea of of you're just going to live your life and then fit diabetes along the way, and I think that is. It's such a mantra that I've really learned along the way. But then it was also kind of instilled from my diagnosis as well, because even growing up it was kids first, diabetes second. My mom would say that all the time. So if you wanted to go play soccer in the 95 degree heat outside, go have fun, but then I'll make sure that I've got the juice on the sideline, right.
Speaker 7:Like that was my childhood and I played competitive golf through high school and I think golf has a stigma in itself that maybe has the perception that it's super easy, but it's just as a draining sport as any other thing that you're doing, um, and especially because some of those rounds they could last eight hours out there, right, and then with without a break time or a time to really figure out, um, like, what your diabetes is doing. I think there have been little things that I've been able to figure out along the way that have contributed to that, and it's little things. Right Like it's having my Dexcom right on my watch face on my Apple Watch. It's the very first thing that pops up on there and that has been fundamental for me in so many ways too. So now my life looks a little bit different post-golf. So now my life looks a little bit different.
Speaker 7:Post-golf we're mostly taking like HIIT workout classes, which have been super fun, but also can be, can just come out of nowhere with some of those low blood sugars, right. And so having that easy access right to my Dexcom on the cover screen of my phone, of my Apple Watch, has been super helpful. And then I think, um, oh, yeah, yeah, even um, like setting my alarms on my dexcom, um to to change a little bit depending on what the activity is, has been helpful as well. So if we're we are doing those hit workout classes, setting it so it's a little bit higher before it gets to the point of urgency has also been super helpful too. So making that the low boundary a hundred might seem like a little bit crazy, but it's going to help you prevent when it gets to the point where it's going to be so much more difficult to resolve that low blood sugar. So yeah, absolutely the cool part is I did them all through college and now post-graduation we've picked them up again.
Speaker 7:And the very cool part is it's they only run for like an hour to an hour and a half, right, so they've got a very specific amount of time. But then being on your A game for that hour, hour and a half is so it's going to be so critical, right. But then and this is the sneaky part about diabetes it's the two hours after the class. To make you sure that just because you're not working out anymore doesn't mean a low can't just sneak up out of the woods, right, doesn't mean a low can't just sneak up out of the woods, right, it's still, it's still very, it's still waiting for you. So I think it's doing those little things right, like just trying to stay up on it as much as possible, um, and then giving yourself the best chance to do those things too, right. So like making sure the dex comes on. They're setting a different um limits to alarm. That's been helpful as well.
Speaker 6:So, and then always I feel like I'm successful. Um, I just find diabetes to be a minor inconvenience in my life. It's nothing that really takes a lot of mental toll. Um, I don't like being high or low, the same as the next person. Of course, you know you feel differently physically. You feel different physically, but you know technology makes everything so much easier. I really feel like that's a big piece of this and also I just don't find that I get all that stressed. This is not something that I look at every two minutes of my day. It's something that I look at when I need to look at. I have it pretty ingrained in me. I have food, I take insulin, I eat. That's just been something I've done my whole life. So I think there's a big benefit to being diagnosed when you're young, because you don't have other patterns. So I do feel like that. That was helpful.
Speaker 1:It does alleviate the burden significantly. It is not perfect. It will continue to improve. There is ample room for improvement there, but it certainly makes things look a lot better than they did even two years ago or five years ago or ten years ago. Another really good one that we got out of here was raising the low alert during activity. I'm a huge advocate of this. I do this as often as I can remember. I'm a huge advocate of this. I do this as often as I can remember. But for like running or biking or whatever activities you choose to do, that might cause a low, getting those alerts at the 120, 130 range when you're able to treat before you're symptomatic and have to stop the activity. My opinion, golden nugget to take away from the interviewees from this episode, and then the other one that I believe came from olivia, was the micro dosing that they do at home so that they don't overdo the corrections and cause severe hypoglycemic event. They try to bring themselves down slowly.
Speaker 1:The other benefit to that I know firsthand is you. You kind of come down with a smooth landing like an airplane versus coming down like a space shuttle where you know that can kind of rock your body and leave you feeling awful. So I feel like those were kind of the key takeaways on success and however you define success during your journey, it's really between you and your loved ones and your providers. But hopefully you found this insight enlightening, thank you. Thank you for listening to this episode of Diabetes Unscripted. The information presented in this podcast is for general knowledge. The mention of specific products, medication, treatments or services does not constitute an endorsement or recommendation. Medication, treatments or services does not constitute an endorsement or recommendation. No-transcript.