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Scott Benner 0:01
Hey, everybody, its Scott, how are you? It's a short episode that just has me in it. giving you time here to let your disappointment fade away.

A few days ago, I was watching some news reports about the fires burning out in the western part of the United States. And it seemed like the next story was about hurricanes. That made me wonder what people do about their diabetes supplies, if they have to run from their home, I thought about myself, you know, being a boy, I pretty much don't pay attention to stuff like that. And what would I do? Probably just run over with a bag and take Arden's entire drawer and just dump it in when I run out and forget something or would I remember to go to the refrigerator and get the insulin? I don't really know. So I thought, I'd like dev a list of things to take with me or a bag prepared or something? And how do I come up with the right thing to do? Because I'm just not that well prepared? Not that person. So I thought I'd find some people who are headed over to the Juicebox Podcast, private Facebook group. And I asked the question, what would be in your go bag? The post received ad replies, and this is what people said.

This episode of The Juicebox Podcast is sponsored by the T one D exchange. You may have some questions. So what is the T one D exchange? It's a fair question. See if I can give you a fair answer. The T one D exchange gathers information from people living in the United States who have type one diabetes or care for someone who does. They use the information which I've already submitted, I've put hardens information. It took me less than 10 minutes, I actually think it took like seven minutes to accomplish. And the questions weren't, you know, deeply probing or overtly personal. They were just questions about living life with type one. T one, the exchange then takes that information. And that information helps to make change in the lives of people living with Type One Diabetes. Here's a couple of ways how the registry has impacted Medicare coverage of CGM devices. It has impacted the FDA is expansion of dexcom CGM labeling that includes now finger stick replacement. It helped to change the American Diabetes associations guidelines for pediatric a one see goals. So like when you walk in the doctor's office and Doctor feels like they arbitrarily are like, you know, we're aiming for a seven Well, you know, they used to say you were aiming for an eight. better information helps the doctors make better asks of patients, and that leadership comes from the ADA. And the ADA, use of lower guidelines came from this information. It's kind of convoluted, and it's kind of simple. The research has also led to increased insurance coverage for blood glucose meter strips, and there's more coming, but they need your answers. It's completely anonymous, 1,000,000%, HIPAA compliant. And if at any time you want to remove your information from the registry, you absolutely can't. You don't have to leave your house, you can do it from your phone or from a computer. You don't have to see a doctor, you don't have to get a blood draw, and you're still helping research about life with Type One Diabetes.

Unknown Speaker 3:56
And

Scott Benner 3:57
bonus, I get a little money. I mean, so if you want to support the podcast, while supporting great research that is really genuinely helping people with type one diabetes, check out T one d exchange.org. forward slash juicebox. Join the registry. All you have to do is for us residents who have type one diabetes, or are the guardians or parents of children who have type one, support the podcast support research. Okay, now let me head into this Facebook group. I don't know if you're part of the group or not you should be fantastic Juicebox Podcast Type One Diabetes is a private Facebook group where people talk about management type one and all kinds of stuff. It's incredibly supportive and lovely. So I asked the question real quick before I start, nothing new here on the Juicebox Podcast should be considered advice, medical or otherwise please always consult a physician before making changes to your health care plan or becoming bold with insulin. Anyway, I went into the group and I asked What should be in your diabetes go bag? I thought I mean, how many things could people say right? But well, I said a lot of different things. So I think you have to really start to wonder, what's my go bag for like, Greg, am I just going, you know, is this something I have next to the door in case I have to go to the hospital? Or, you know, going out the door, you know, I'm gonna spend the night at my girlfriend's and I didn't think I was going to, you know, or is there, you know, is the west coast of the country on fire? are we about to be thrown into civil war? You know, what level of bag Am I looking for here? You know, so the first number of answers were what you would expect in are using an omni pod. You got to grab pods, you have a dex comm grab sensors in the transmitter. If you're using like skin tack, or, you know, alcohol wipes, or some like, you know, barrier spray, bring that with you. If you're using a tube pump you you're gonna need you know, sets or batteries, in some cases, a charger. Well, if I need a charger, then I need electricity. What if I don't have electricity? Well, you know, some people said, we have these kind of big battery backups that we have. And they're always charged to take with us. Some people said they had solar chargers to use and I'm like, oh, what are these people like they're running from zombies. You know, they mean, they're gonna perch up on the top of the hill and charge up their phone so their phone can run their kids loop. And they got they got everything. So what is it, you're preparing for it? That's your decision, right? If it's a quick bag for an overnight, it should have what it should have in it. Pump supplies, glucose tablets, you know, low snacks, test strips, your meter, Lance, your Dexcom stuff, I wouldn't take garden somewhere overnight without having a change of a CGM. If she needed it or a couple, I bring a couple of extra pods. You know, just in case one of them. You know, I don't know, something happens, you know, that's what you're doing here. We carry Arden's insulin in a small, like Yeti, it's not a cooler, it's, what would you call that it's like a there's a word for it. thermos, there's the word, but it's much smaller. It's almost like a single use thermos and I put a little bit of ice, I take a vial of insulin, wrap it a little bit in a paper towel. I don't know if this is like a good reason for this, just how I've always done it. And then I put it inside of a baggie, so it can't get wet. I put it in, you know. So ice, then that bag with the insulin and a little more ice on top. little screw top thing. I've had to keep insulin cold for days. It's really cool. But that's the next thought, right? am I bringing a vial of insulin with me? am I bringing all of my insulin with me? am I leaving my house and coming back tomorrow in six hours? Or do I think I'm never coming back? And then that starts getting into, you know, like a prepper mentality. And what do I do if I'm running out the door? Am I going to forget things in a pressure situation? Now, I can't speak for you. But I'll tell you right now, I'm gonna forget stuff. Because I'm just gonna run around like a crazy person yelling and screaming, grab a drawer, dump it into a bag and take off and probably run right past the refrigerator never grabbed the insulin. If you're using a pump, should you still bring syringes or your pen? Probably, you have a cooler, you have foods that you can use. What about water? And so on doesn't work. If you're not hydrated, you have water? How about your prescriptions? Give your medical instructions written down. Someone said I have our passports and birth certificates near the exit of our home. People talked about emergency radios, medical IDs, ways to communicate if you get separated. And I started thinking, huh, all that in a bag. And just as I was thinking all that in the bag, right? I have to find it for you. The people who live in places where there are hurricanes started jumping into the thread.

Amanda called herself a hurricane prepper which I thought was great. And she just said as a hurricane prepper I have 14 to 30 days of all diabetes supplies, including a battery pack and all insulin on hand. All supplies go in a 30 gallon plastic tote except for the insulin that goes in a mini cube cooler. She said if I was prepping to leave in case of a fire, I'd take everything I could fit in my car. Where's the other one about this? Hold on a second. And he said that she lives in Oklahoma, where there are of course tornadoes. She said, be sure to pack a whistle. Now I wondered what the whistle was for. And so did Megan who asked Danny and Annie replied, not often but if the tornado rips through a house, you can be trapped in the shelter. You need a whistle to alert people who are looking for you. Yelling works but you can get tired and anxious and it depletes your energy. So a whistle and a number of people who have to deal with hurricanes. echoed this sentiment, I don't have a bag, I have a plastic tub or a container with all the diabetes supplies in it that I can just grab. Now, if this seems like overkill to you, it might not be alone. I live in a place where there are no hurricanes and we haven't seen wildfires in a very long time. And I have to admit, I don't have a go bag. I don't have a go box. I don't have a go. don't have anything. That's what I'm saying. But as I'm reading through this, it's hard to ignore bill Who said I just lost everything in the Southern Oregon wildfire. And it hits so fast. I had five minutes to pack forgot most of my stuff. So please pack before it's too late.

Unknown Speaker 10:42
Anyway,

Scott Benner 10:43
there's gonna have to be a fine line between lunacy and preparedness, and I think you could find it. So insulin, pods, if you're on on the pod, other pumps, supplies if you're on a pump, that isn't the only pod you're gonna need batteries, you're gonna need a way to charge things, your Dexcom supplies transmitters and sensors, tape and barrier wipes. Make sure you've got your glucagon and not your glucagon packed away somewhere where you can't get to it. But there too, you need to meet her and test strips and Lance's syringes, glucose tablets, other treatments for lows, not just one or two, either you could be gone for a while. juice and water to stay hydrated. Do you have an emergency radio a cooler? One person says they always have ice packs frozen in their freezer in case something like this helps. person said if you're looping, don't forget your Reilly link. And that's and many people echoed the sentiment, you may not have access to electricity, and a lot of our technology counts on that. What about Internet access? What if you lose internet access? You're gonna lose your dexcom share, you're gonna lose nightscout? Do you have a way to handle those situations, maybe you should practice a little at home, you know, managing one day without the internet. Portable chargers, if you have them, that's great. If you don't keep them charged, they won't help you much. You could have the charger, not a cable not going to help you so much again. You have your prescriptions, medical ID, alcohol wipes Ziploc bags just to keep things clean. How about your medical instructions? What if your child or you gets separated from the group or are incapable of helping yourself? How are people going to know what to do? Money, pocket change cash, your passport, your birth certificate identification, make a list for yourself. Let this be your starting point. Then sit down and make your own list, decide what goes in your bag, and then pack the bag and put it somewhere a hall closet near a door and have a plan so that when you grab that bag, your very next thought is Do I have the insulin? Maybe there should be a note pinned to the bag that says insulin? I don't know. Keep in mind, not all these bags are going to be for the same thing and how many bags you're going to have. Right? So there's an overnight kind of an idea. And then there's a Oh my god, there's a fire coming idea. So you're either bugging out or you're leaving for a couple of days. I started feeling very responsible when I started making this, this episode and I thought I can't just you know, leave it up to the people making the list. There should be something else and thanks to Amy. She reminded me about the diabetes disaster response coalition. The ddrc has a great preparedness plan that you can go print out or follow. There's a checklist on there. If you have questions you can call them it's actually a really cool organization. It was started by make sure I remember this right. It's the ADA and the jdrf. And hold on a second. Diabetes disaster. Response coalition.org. The American Diabetes Association insulin for life and the Juvenile Diabetes Research Foundation are the founding partners of the DD RC it's actually a great little website. There's diabetes preparedness plans, diabetes resources, emergency prescription refill links, patient assistance programs, good little resource they actually have some stuff on here about COVID. If this, let's just look at this for a second. Emergency prescription refills during a disaster states may activate an emergency prescription refill rule. Learn what you need to know to prepare for your medications. Oh, cool. It's very informative. Simple website. Diabetes, disaster response.org. All of this has made me wonder what if I don't have time to even grab the go bag? Right? What if something like that is happening? And we just run? Well, you have to know how to manage yourself at a minimum, right? Like what do you do if you don't have your phone or your fancy pump? Or your fancy CGM? You know what's that? the bare minimum you can get by on and get by Well, I think that's something that maybe gets lost in a comfortable world full of technology. And I believe that it's worth your time to try one day, maybe the next time you have a pump change instead of putting it right back on again,

oh, try MDI for a day, see if you can do it. At the very least sit down and give it some thought, you know, look at your pump settings once in a while, so you know how much bazel you're getting in the course of a day and you could easily swap back to a an injected slow acting insulin, you know, know that you get a unit an hour and that that's 24 units a day. Have some concepts around that. All right, I don't want anybody to be scared. I just want you to be prepared. So don't let this add any anxiety to you. This should be a calming thing. I'm ready. should be the feeling. And what's that old saying? It's better to have it and not need it. And to need it and not have it right. Hope for the best. prepare for the worst. I want to thank all the good people the Juicebox Podcast private Facebook group for putting their thoughts into the thread. Nicole, Laura, Sarah, Rebecca, Rachel, Jenny Liske. Caroline, Amber, Mariah Sara Kelly, Sarah, Ariana, Jamie. Jamie who by the way, put in her document that she has her own thing that she fills out that that goes in her bag. It's got all this great information on it. She put it in there in case you want it. Lisa, Nikki Amanda, Deidre, Rachel, Julie, Jessica. Teresa, Karen Chelsea. Elena, Shannon. Megan again different Megan, Wendy, Melissa, Leanne, Jason, Laura Britt, Ryan, Marta, Amy bill, Jill, Nash, Annie, Brittany, Santina, Kenny, and Laura. Greatest Type One Diabetes Facebook page in existence, in my opinion. Thank you all so very much. Well, it goes without saying that I hope your go bag sits in a closet and you never touch it. But if that happens, don't forget to rotate the supplies out of the bag. The worst thing that could happen is you make your go bag today. Two years from now you're running from a grizzly bear. You grab your go bag. I don't know how the bear gets in your house. But let's just say it does. You grab your go bag you're taken off and what you've got in there is an expired glucagon and you know some candy that nobody can eat. So rotate the bag back into your stock. I know I've just given you an extra job. But if you want to do this, it's going to be worth doing right. Thank you so much for listening to the Juicebox Podcast. And thanks to the T one D exchange for giving me the opportunity to help with their registry. T one d exchange.org. forward slash juice box. Hit the link in your show notes. Fill out the information support the podcast support type one research. The T one D exchange is looking for up to 6000 per snippet precipitants. Well, I'll try that again. The T one D exchange is looking for up to 6000 participants. So please add your name and on that note, we Cue the music