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
S1E4: Diabetes challanges in everyday life
What if mastering the everyday nuances of diabetes could transform the way you experience life's special moments? On this episode of Diabetes Unscripted, we unravel the complexities of living with diabetes amidst the unpredictable chaos of real life. From navigating the highs and lows of blood sugar management during festive holidays, to the practicalities of carrying essential diabetes supplies in the most restrictive of spaces, such as bustling concerts or outdoor adventures, we leave no stone unturned. Through candid stories and shared experiences, we confront the frustration of unexpected results despite diligent management efforts, particularly for those who lead active athletic lifestyles. We also acknowledge the emotional and logistic hurdles that come with diabetes and the critical role community support plays in this journey.
With a focus on staying prepared and proactive, we share personal insights into managing insulin on-the-go, particularly when traveling or away from the comfort of home. Hear firsthand experiences on how habits like carrying a syringe and ensuring access to insulin have become second nature, as well as strategies for obtaining insulin from pumps during activities like hiking. We also shed light on the game-changing role of technology, such as insulin pumps and continuous glucose monitors, and how they alleviate some of the burden and anxiety associated with diabetes management. Our conversation emphasizes the importance of consulting healthcare providers for personalized medical advice, offering listeners valuable tips to make living with diabetes more manageable.
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. This time around, we asked our candidates what they felt the most challenging part of living with diabetes was, and there's some interesting insight in the content ahead. But I'm going to kick it off with just some of the things that kind of stood out to me as I interviewed these candidates, and one was the holidays are challenging, and here's what I would say about the holidays is you know, look at a large family event with a big meal.
Speaker 1:Right, that happens once a year. You want to do your best to manage your blood sugar. Potentially use an extended bolus, potentially bolus multiple times throughout a meal if there's going to be multiple courses. But a high blood sugar once a year at that family event is far less detrimental than a high blood sugar every other Thursday when you eat mom's lasagna or your favorite pizza. So you know, don't beat yourself up too hard over the weird one-off events that happen rarely and really try to focus on the reality of most people with diabetes eat the same 15 to 20 meals 90% of the time. Master your dosing for those meals.
Speaker 1:The other challenging piece that comes up often was preparation, how to be ready for events and travel and things like that, and there's some good insight in the answers that I'm going to play.
Speaker 1:But one thing that came up three times during these interviews that I want to touch base on and we had the backpackers and concert goers where a lot of the concerts nowadays you have to carry a super small, compact, clear bag and by the time you get your diabetes stuff in there you don't even have room for a phone or anything else that you may need to carry outside of your diabetes things or backpacking, for example, or even biking.
Speaker 1:One of the things I shared with these candidates that they seemed to really appreciate was you can always put on, if you're a pumper, a second infusion set that you're not hooked up to.
Speaker 1:That would prevent you from having to carry an extra infusion set in your small bag that you're not hooked up to. That would prevent you from having to carry an extra infusion set in your small bag that you're taking in, and then also you could fill an additional cartridge and put that in the bag. So now you're not carrying sterile wrapped infusion set, sterile wrapped cartridge and a bottle of insulin that could potentially be exposed to temperature during, you know, a concert or a backpacking activity. So I think there's multiple places and circumstances where that could be handy, but it was interesting to see why they hadn't thought of that, so I thought I would share that insight and also to think about the insulin right, If it does get exposed to temperatures, you're taking a cartridge worth of insulin instead of a vial, so it's a little bit less detrimental. So, without further ado, I will turn it over to our interviewees and you can hear what they had to say on that subject.
Speaker 2:I would say the most challenging part is when you do the exact same thing and get different results. All diabetics at one point or another, whether they're sick, whether they're doing same type of activities, and you do the exact same thing, but for some reason it doesn't work the way that it did before. So I would say the biggest challenge is again doing things that you've done many times. Yet when you do the same thing, at times you get different results Exactly same thing. At times you get different results Exactly. I would say. My aggravation with that is I mean, food is one, but probably athletics and sports is the biggest challenge. Just, you do the same thing over and over, but whether it's stress, whether it's whatever it may be, but something turns out different and then you question yourself and then that's where the community comes in and it's a blessing only because when you share your story with friends, so the whole thing's challenging.
Speaker 3:There's no way in anyone with any form of diabetes not saying it's challenging. The most challenging part is probably accepting it and running with it. You have to accept the fact that you're going to be dealing with diabetes, asking yourself what your blood sugar is before you go to sleep, how many carbohydrates are in the meal, how much insulin is on board when I go for a run, how long is my life expectancy? What should I do with my kids? What are my priorities? That's the challenging part of living with diabetes, but it's similarly the blessing of understanding your mortality. That, like makes the ice cream taste sweeter and like the sunshine shine brighter. So the thing that's the challenge is actually also the blessing. So of course, there's the logistic problems with diabetes, which is just like having the money to afford these things, getting doctors and things and prior auths and scripts. I mean it's endless. It's really endless. But once you accept that those burdens like are part of the diagnosis of diabetes, it's not just the blood sugar, it's being able to afford the insulin, it's being able to, like, make time for exercise, it's being able, once you accept all those challenges, that's the challenging part. But until you accept those things, you're just in a world of hurt because if you can't get over the hump, that this is part of the new work, your new lifestyle.
Speaker 3:If you are fortunate enough which most people in this country, the United States, should be able to have access to even Medicaid patients, insulin pumps and continuous glucose monitors the burden has been significantly reduced. The anxiety has been significantly reduced. The idea of having to eat because you have diabetes is gone. The idea of thinking that you could slip into a hypoglycemic event without anybody knowing or seeing it, or slip into DKA, diabetes ketoacidosis. With the advent of a continuous glucose monitor, that is, almost. With the creation of a continuous glucose monitor, that is literally almost impossible. And as long as you have access to those things insulin, cgm the burden is way less.
Speaker 3:Um, that's historically now, as a person who's diagnosed with diabetes today and you get handed this stuff, it's super burdensome, so it's really relative, right. So the people that I see that are first diagnosed today. This is not cool, this is not fun, this is really hard. So there's a relativity to that question about the burdensomeness. It seems to be less work perceived, right, but I don't know how it was for you, mark, but like there were days when I was 15 or 16 or 21 or 25 where I might not have tested my blood sugar for a day or even know what the number was. 21 or 25 where I might not have tested my blood sugar for a day or even know what the number was. So that was really not too burdensome, was it?
Speaker 4:Like I was just running around footloose and fancy free, so, but that wasn't necessarily a good I would say that it doesn't take a diabetes, does not take a holiday, right, and that is that's by far the most challenging thing you can. You can be doing something, you could be on vacation, and it's the best time of your life, and then a high blood sugar comes up out of nowhere and you check and then you realize that you've got a kinked tubing right and it's. You did everything to prep for that, you have everything all set up and ready to go, and then it still can sneak up out of the blue and sometimes put a kink in things right. But it's challenging on random times too. It's tough around the holidays too, on like random times too. Like it's tough around the holidays too, I think, especially because I like build up what the holiday is going to look like and how excited I am, and then sometimes the holiday comes and then a low blood sugar or high blood sugar or bad side or whatever it might be, they can sometimes come along too. So even the times when you don't want to think about it or you maybe want to be doing anything other than dealing with diabetes and you still have to do that right, that's a real challenge.
Speaker 4:And then I would also say that I don't know if society is always set up for people that are living with a disability Diabetes. It might not seem like it's a disability, but in so many ways it can be. And it's like going through TSA at the airport, right, and every time they're like you definitely have a bomb on you and they want you to touch your pump, and then they check your hands and you get swabbed and then, oh, there's no bomb residue, so, but that's like a real challenge, right To be amongst all my peers in the airport and I'm the only one that's going to get pulled off to the side because I live with this thing. And then, like another one would be like when you want to go to a sporting event right, and it's either like your college team or you're going to see a professional team play and they don't allow bags into the arena or the stadium or whatever it is, because that's what I need to be successful. But then they really have to inspect them and make sure it's a clear bag and all these other things need to also factor into it.
Speaker 4:So it's not that it's impossible, it's just that sometimes that can be burdensome. You know you already have to deal with all these other things and then on top of it, just to have the same amount of fun that everyone else is and that my friends are having. Sometimes it it takes in a little extra effort to get to that point, so it can be a little annoying, but it's. I want to like caveat this with it's not impossible, right, it can. It can be annoying and it's bothersome, but nothing's impossible and I do stand by that.
Speaker 4:So so normally it's one complete site change in a little plastic bag that I put inside of my concert or my sporting event or whatever it might be bag. And then I also have the, the Lululemon crossbody one. So they're they're pretty compact to begin with already. So we're not talking about like a bringing, like a sizable bag or a backpack or anything like that, and so I've got limited space to work with already. So I normally have one complete site change in a little plastic bag. And then I also normally I'm the biggest proponent for juice, but I would not take a juice into the sporting event with me Normally it's something that's super compact, like glucose tabs, and glucose tabs, they, they do their job.
Speaker 4:So I'm probably going to pack those little guys with me and they come in those little tubes, so those can be super convenient as well. And then I'm trying to think of what else I would pack with me. Um, well, obviously I'm gonna have my my cell phone with my Dexcom on it, and then bring my Apple Watch as well. Those get through security just fine. It's just the, the life-saving things. Those are the ones that struggle with getting through security. Um, yeah, so I think maybe those are the two things that I'd really want to pack in that bag. Maybe my, my glucometer, if it's going to be like a longer experience, like if it's like in a five-hour concert or something like that. Maybe I pack that as well.
Speaker 5:I feel like travel in general is tough. I've done some hiking and in general hiking involving tent camping and nowadays when you really need electricity, I find that hard and you really have to plan ahead and really be mindful when you're packing. In general hiking or camping, any type of travel you have to know you have to carry significant amounts of supplies with you. So really loading up a backpack that's full of water in addition to all of the diabetes supplies because you really have to have a plan A, a plan B and a plan C and you know I've never been a light packer so I carry that with me with diabetes stuff too so just having anything you might need in any type of situation is pretty important. Have a list, absolutely have a list of all of the stuff that you might need in different scenarios. So I have a list of what goes into my car to bring on the trip. I have a list that goes into my backpack. I have a list that goes into my medical Ziploc bag and a list that goes into my snack Ziploc bag. So that keeps me organized and I don't have to rethink this every single time. I think that's genius.
Speaker 5:The very first hiking trip I went on. I thought I was being really smart. I had a backup CGM and I figured I would link it to my receiver so that I would have something in case my pump died, if that went on a battery, if I didn't have a meter. And so what I did in that process was I disconnected my CGM from my pump without knowing it. So that was a lot of chaos right before I went backpacking. So I remember talking to you at that time in my life and you saying why didn't you just bring a Libre? I always, I have to say, if I'm ever anywhere, even slightly far from my house, I always have a syringe on me. I always know that if I needed to, I could draw insulin from somewhere. So I've gotten, I think, good about that. The older I've gotten, I'm a little more nervous now. Um, if I was hiking, I would probably draw it from my pump, depending on how much I had to start with.
Speaker 1: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. Always seek the advice of your physician or qualified health care provider with any questions you may have regarding your care.