Diabetes camp is great, but what if there were a program to take teens with type 1 on a more adventurous journey? A new, international travel program to foster confidence and independence is in the works.
Savannah Johnson is the founder of Type 1 Way Ticket. Diagnosed as a toddler, she says travel as an adult changed her life. We’ll find out more about this new adventure travel program, what parents and teens can expect.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
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Episode Transcription Below (or coming soon!)
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My son Benny is back from a four week trip halfway around the world with a non-diabetes camp program. He says it was amazing! To be honest, I had a really hard time with it. This week, we share how we prepared, what went wrong, how Benny deals with feeling different on these types of trips and a lot more.
Previous episodes with Benny:
Benny & Stacey talk untethered and more on their way to the endo
Talking about Control IQ & addressing kids' questions about diabetes
Ten years of T1D - our whole family speaks up
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
We talk about the VIVI cap which helped keep Benny's insulin cool. Check out VIVI-CAP www.tempramed.com – use promo code DIACON21 to save 10% off your purchase! (promo code valid through 8/31/2021). We are not compensated for use of this promo code, it's just a nice discount for listeners. They did send us the product for free.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Episode Transcript below:
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
This week, I sent my teenager with type one halfway around the world for a month with a non diabetes regular camp program all the way to Israel. He's home safe, and I thought it would be fun and interesting to talk to him about how it all went.
Are you glad you went with all the work you had to do?
Benny 0:43
I am so happy I went I'm so happy you guys let me go. It was amazing.
Stacey Simms 0:49
Benny is 16. And we share how we prepared what went wrong, how he deals with feeling different on these types of trips, and a lot more.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. Always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny, who you're going to hear a lot of this week was diagnosed with type one right before he turned two. He is now 16. My husband lives with type two diabetes, I don't have diabetes. I have a background in broadcasting and that is how you get the podcast.
And I've talked about this for a while on the show. We've been planning for quite some time. But if you are brand new, earlier this summer, we sent our son Benny to Israel for four weeks. I still can't believe we did it. bit of background. He has attended this irregular summer camp about four hours away for us in Georgia since he was eight years old that first year for two weeks. And for a month every year since except 2020. Of course due to COVID. He also goes to diabetes camp. He started going to the sleepaway diabetes camp for a week, when he was seven, he went to a little day camp in our area, he mentioned that he gets called kudos, he went to that when he I want to say he was three or four years old, he was very, very little. And that's a wonderful program as well. But for this year of the regular camp, when you are a junior, when you're going to be a junior in high school, there is an option to go to Israel. So while we don't know all the staff who went we know the program, they know us the kids know Benny, and they know the type one situation as much as friends can. Even so this was really hard. It was mostly hard just for me.
But I'm going to come back after the interview and tell you a little bit about the lowest moment I had for real when he was away. And how it was it was honestly perfectly timed. I was so lucky to have the support that I did. I'll do that after the interview. A couple of notes before this interview. If you are new to the show, and you haven't heard any of my interviews with Benny before, he is a bit silly. He's a bit sarcastic. And you know, I think our whole parenting or family style leans a bit toward that toward darker humor. So please No, and I'm sure I don't have to say this. We take diabetes very seriously. He is in great hands in terms of health care, and our endo who we've had, we've been seeing him since he was two things were doing great. I also want to say that I am a bit troubled by the comments you're going to hear Benny make about diabetes camp, but I'm choosing to leave them in like it's how he feels right now. Just remember when you listen, this is a 16 year old, who may not have the best memory of when he was younger. But I know how much he loved diabetes camp and how important it was for I think for the confidence that you're coming from him now. And we'll revisit this issue when he gets older. But we have done other episodes about how much he liked camp. So I'm gonna link those up as well if you want to listen. But look, how you feel is how you feel. And that can change at different ages doesn't make it any less valid. So I'm leaving those comments in. And after you listen to the interview, if you have any questions or stuff you'd like us to follow up on, please reach out, you can always go to Diabetes, Connections comm and contact me through the website. We have a Facebook group Diabetes Connections, the group, and of course, I'm all over social media. But I'd love to know what you think especially those of you who have teenagers or young adults who were not teenagers so long ago, you know, I'm curious to know because I wonder and I worry sometimes about being so open about this, you know, we are so far from perfect. I do worry a little bit about you know some backlash, frankly, and some people thinking we're really doing it wrong. So let me know what you think. But be nice about it.
All right. Diabetes Connections is brought to you by Dario, we first noticed Dario a couple of years ago at a conference and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now. The Daario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door at a mobile app with a complete view of your day. The plan is tailored for you with coaching when and how you need it. And personalized reports based on your activity, find out more go to my dario.com forward slash Diabetes Connections.
Benny 5:13
Hi, Benny, how are ya? I'm great. How are you?
Benny 5:14
I'm great. How are you?
Stacey Simms 5:16
I'm doing very well. You've been home for three weeks as how are you settling in?
Benny 5:20
Great. I want to go back. I miss my friends.
Stacey Simms 5:23
Yeah, I'm sure. I'm glad you had a good time. So I have a lot of questions for you.
Benny 5:28
From Listen, stop. Hi, listeners,
Stacey Simms 5:33
parents and adults with type one. But first, let me just ask you How was the trip? I mean, I tell everybody how the trip was
Benny 5:40
very, very fine.
Stacey Simms 5:43
And we'll talk more in detail about diabetes stuff. But did it meet your expectations? Like Was it a good time?
Benny 5:49
Honestly, the most fun was when they just kind of let us do whatever in the hotels,
Stacey Simms 5:54
history, religion, majestie, no big shakes, just hanging out your friends.
Benny 5:59
Two days before we went to some banana boating thing. All the counselors were talking about how much fun it is like they all did it. And it's super cool. And it was really boring. Oh, you're the worst.
Stacey Simms 6:11
Alright, so let's talk diabetes stuff.
Benny 6:13
Oh, okay.
Stacey Simms 6:14
Um, we planned a lot of this. We talked to the staff and they knew you because you've been there for a long time. But not all this stuff know me.
Benny 6:21
I had one of the counselors as a counselor at Camp Coleman. Two years back, no, three years back. And then one of the other counselors was in our unit early early.
Stacey Simms 6:35
I guess my point is, you have been to this camp since you were eight years old. So while perhaps the people that were on your bus, you know, the the staff Yeah. familiar, the system, the people that I needed to talk to you understood that this was just you didn't just show up that day, and say, I'd like to hang out with these campers, so they knew who you were. So we did a lot of planning in advance that I can talk about at a different time, because I don't want to get too bogged down in all of that. But let's start with what involved you, which was the packing anything to share. I mean, we just went through and figured out what you needed, and then added half more, we gave you like, 150% of what we thought you needed. had that go for you.
Benny 7:11
I didn't touch 80% of what was medical wise. I mean, there wasn't much need for it all. Like it was nice to have it in case I didn't need it. Most of it was like die hard situation. Like if you're going through the desert for 18 weeks, and then swimming through the negative. What.
Stacey Simms 7:32
I don't know if you can swim through it. But I mean, like knock wood we sent you with, I think two vaccines and one GMO pipe open. So you didn't use any of that. Right? So that kind of stuff. Thank God. Now of course, of course, we sent you with more insulin than you needed normally. And you use a ton less insulin. Yeah. Which we'll talk about. Well, I
Benny 7:51
used most of the vials, right You certainly with
Stacey Simms 7:54
right? But I sent you with pens. Also, you know, I sent even lots of extra stuff. I'm curious and I mean, not to put you on the spot. But why don't you use a nice medical bag? Why won't you let me send you with something that is organized easily? much work the blob of a bag that you use too much work. It's so gross. It's one big compartment.
Benny 8:15
It works. It does its job.
Stacey Simms 8:18
We do break it up with little bags inside. But I gotta tell you, I know it's not me, but I would I would get like a nice medical bag
Benny 8:25
with little find a medical bag, and we can talk about it.
Stacey Simms 8:29
I have like 10 that I would get Oh, you're the biggest pain. Okay, so we'll look for that. Like this thing. No, that's a that's a packing cube.
Benny 8:37
Hmm. That Well, mine is packing you.
Stacey Simms 8:40
Well. Yours is part of a packing cube system. Yes, you have. For those of you who know packing cubes, I enjoy them. I have them all different sizes. Then he uses just one big rectangular bag for your medical supplies that he carries out at home in his backpack. And it's great because it has everything in it. But it's horrible because it has everything in it. I like you should compartmentalize. I
Benny 9:02
already do that. Give me a face in different way.
Stacey Simms 9:04
Yeah. Alright, so then you had everything packed. And you had your medical bag of all your diabetes stuff inside a backpack that I assume you took every year. Okay. Is it a Camelback? Did it have water? I don't remember Oh,
Benny 9:14
so I had a hiking bag right that I threw a Camelback bladder in
Stacey Simms 9:20
Was it easy to get water all the time?
Benny 9:22
Oh yeah. They made sure you had a you weren't allowed off the bus if you didn't have three liters minimum of water would you
Stacey Simms 9:29
perfect What about the the plane ride there that I know it's so long but you know for me not fun for me you got on a plane in Charlotte and you flew by yourself from Charlotte to Newark then you met the group went Newark to Israel and for me once the Dexcom signal disappeared in Charlotte like that was pretty much it cuz you got on the plane oh yeah appeared you had it but I didn't have it that was pretty much it for the day for me cuz I'm not gonna do watch you How so? How was it? You know? Did you do okay? Especially on the plane.
Benny 9:58
I didn't do anything. Special, like at all. When I got to new work, my blood sugar did go low a little bit, but I had food. And then I was fine.
Stacey Simms 10:07
He told you look out for this baggage claim Lowe's, when you get off the plane after you've been on the plane for a while and start walking, it was terribly described with it we're going to be this is going to be one big complaint episode I can tell grievances will be aired.
Benny 10:19
I just like to make it known. I may complain a lot about it. But I loved it.
Stacey Simms 10:23
Thank you for that disclaimer. Because I know you loved it. You read you just like to complain when you get a chance. Yeah. So you get there. I'm not going to I promise I'm not going to go blow by blow the whole trip. But I am curious. That's a very long plane ride. As you said you didn't do anything really special? Did you consider changing basil rates walk around or anything?
Benny 10:43
So the first trip the flight there, I didn't even think about it. And it worked out pretty fine. So on the way back, I didn't touch it.
Stacey Simms 10:51
Alright, well, that's control IQ helping. That really helps a lot. Because in the past, we've, if you've been in the car for three or four hours or a plane ride, you've gone so high, so that's really good. Okay, so we had set up different basal rates in your pump. Yeah, because we assume there would be a lot of activity. So as I recall, we had the regular one, then we had a 15% less insulin and the 30% lessons, and we labeled them. Yeah, 10% less, you switch to that when you got there.
Benny 11:15
The first full day we were there, I switched immediately to the 30%. Less one. And I was Hi, pretty much the entire day. And I did that for about a week. And then I texted you. And I thought the 15% less would be too much. So we made a 20 like 3% one. But eventually, I ended up just switching back to my normal basal rate. And I mean, that was fine.
Stacey Simms 11:40
One of the questions that we got and that I was going to ask you about here is talking about how difficult it was to carb count. Forget the activity for a minute or two. But like with all the foods that you do, yeah, no,
Benny 11:50
it was next to impossible to know exactly how much I just kind of guessed. And sometimes, or at least most of the time, breakfast and lunch, it was next to impossible to know how much I should give myself because I didn't know what kind of activities we were doing. And I didn't know how like extraneous they would be.
Stacey Simms 12:10
Well, they would tell you in the morning, though, wouldn't they what you were doing? I mean, I knew
Benny 12:14
what you were doing. Well, they they tell us the night before, but like it was vague. It was like okay, we're going to go on a hike tomorrow. And that could mean we're going to walk 10 feet up in elevation, up some stairs and then look at a valley or canoeing. We're going to walk through the negative for four days.
Stacey Simms 12:32
I feel like I should have asked you more about like when you were going high when you first got there because you gave yourself 30% less insulin. How did you feel like were you uncomfortable was fine. Yeah, you never feel bad when you're high?
Benny 12:42
Well, I mean, sometimes. Yeah, I know. I know. But yeah, no, I was fine.
Stacey Simms 12:46
But mentally were you? I mean, I I don't even have to ask because you you didn't get stressed out. You never get stressed out because of diabetes. Like Were you worried like no, no, I mean,
Benny 12:59
the only time I was where I was worried about going low during the desert. Yeah, but that was about it.
Stacey Simms 13:05
So tell us about that. What was the desert when you say that? What was that?
Right back to Benny answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar, why we carry emergency glucagon there's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar to Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give the book correctly find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvokeglucagon.com slash risk.
Now back to Benny talking about the only time he was really nervous about diabetes on the trip
Benny 14:05
is like the third or fourth day we were there. And they made us pack our bags. We left the hotel. We put our big bag with money with the majority of our clothes under the bus and we didn't see that for three days. We had a medium sized like duffel bag, which had clothes for the next few days. And then we had our you know our backpack. So the bus would drive our medium bag to the next camping spot. We'd unload that and we'd carry our our normal bags with us. About 20 minutes into the first hike. I immediately went low. So the medic that was with us, like prepared. You know I talked to her. She was great. She had like four like hand sized bottles of like squeeze honey, and I downed like half a one like 20 minutes into the trip. That was pretty much the hardest, battling Those lows was the hardest, like the most difficult thing I had with that diabetes pretty much the entire trip.
Stacey Simms 15:05
What was the medics reaction? Was she just met? Oh,
Benny 15:07
no, she cool. She was, um, she was a medic in the IDF. She had worked with kids with diabetes before she'd been on the trip. And she was fine about it. So
Stacey Simms 15:15
she didn't make you feel weird now. Okay. How was the honey? It's pretty good.
Benny 15:20
You know, eventually, I just got to the point because I mean, it was a constant battle for the entire trip. Make sure it Angola eventually just got to the point where I just like, tapped her on the shoulder and she'd be like, okay,
Stacey Simms 15:31
and that was three days. Yeah. Okay. So that was probably the hardest part. Yeah, I miss those three days.
Benny 15:36
It didn't help that we were grotesquely underfed.
Stacey Simms 15:40
Okay, complain away. Hit me with the breakfast so late
Benny 15:43
for lunch and dinner. We're fine everyday. I still don't understand why. But breakfast, you know, we'd like in the early hours of the morning 530 to 11. breakfast every day was a cup of tea and a single cookie. And I will never understand it. We'd hike, you know, and then at 11 we'd sit down and have lunch. And then we wouldn't do anything until dinner. And I don't understand why lunch and dinner were so big. If we're not doing anything. Did you ever put anything in your bag?
Stacey Simms 16:11
Like for the next morning was? Yeah,
Benny 16:12
well, so my friend Nathan had these like, you know, those like gels that bikers use on there. Yeah, he had a bunch of those. So I stole a couple. They had like 100 milligrams of caffeine in them to be perfect. But you
Stacey Simms 16:23
never put like a pita in your bag for the next day. No,
Benny 16:26
gingers weren't like, stuff we could take with us. I'm just kidding. And then they were like, I mean, it wasn't like we were literally in the middle of the desert with no way. Yeah, we had to walk or we wouldn't be able to get out. There was always you know, bus was always a 20 minute drive away.
Stacey Simms 16:40
What food Did you like the best shwarma
Benny 16:44
shwarma in a pizza with hummus. There was some spice, we can never figure out what it was. It looked like a red chili sauce. But they always just pointed at it and said you want spicy. You know that when you know lettuce, pickle, blah, blah, blah, whatever. Every time, every lunch.
Stacey Simms 17:02
That was yummy. So good. I would assume that after a month of eating pretty much the same thing. You figured out how to dose for food if not for the activity. Yeah,
Benny 17:09
after a while, we stopped doing, you know, like intense, hard activity. So I kind of had to readjust again, because it was like in the middle. It was you know, it was hot. And we'd walk a lot, but it wasn't like, hard. You know, like, I'm gonna die. It's 106 out.
Stacey Simms 17:28
So everybody wanted to know what surprised you about the trip or about the trip about diabetes, whatever that means to you.
Benny 17:33
Um, how bad the plane food was,
Stacey Simms 17:36
oh, plane food has a reputation of being delicious. I can't I mean, why would that surprise you?
Benny 17:41
I've never had like, a long in a flight. But yeah, but you ate it? I didn't on the way back. Oh,
Stacey Simms 17:48
that's what surprised you. Yeah. I'll tell you what, surprise me. Oh, okay.
Benny 17:55
So closer to the end of the trip, they took us around to a bunch of different kinds of people. We met Orthodox Jews, a Palestinian, a druid drude, we met someone who just lives in Israel, you know, doesn't believe in anything. And we got other perspectives on everything. And just the way, you know, as a complete outsider, in the way they all see everything is just so different in the way that they saw things compared to each other. I mean, I had never taken into, like thought how different people could see the same thing.
Stacey Simms 18:31
That's really interesting. That's great. What surprised me the most was that you didn't have one instance while you were there. And this is all about diabetes, for me of the kind of thing where every once in a while, you'll forget to put your pump back on, or you will have a site crash out and you won't change it or just something happens where every once in a while you are 400 you know, for three hours, and I'm like, what's going on? You're like I fixed it, I rage bullets and all that stuff. And I was sure that that was going to happen a lot. It didn't happen once. It didn't have only one high, you went low, but it didn't happen once. And I gotta tell you, I'm so proud of you. And maybe that sounds like a low You're welcome. Maybe it sounds like a low bar as you listen. But you send a 16 year old off by himself, right? Nobody was. And to be clear, no one was checking you every night. Nobody was right, nudging you. So
Benny 19:17
Yoni, I love him. He's my favorite person of all time. I love you. And I know you're not listening. He was the counselor that we decided would check in on me make sure I'm not dying. Because he was in my cabin. A couple years ago, the counselors would come around and do room checks, make sure everyone's in their room. And he'd always you know, he's like many of you dead. That's what he'd say, you know, I'm good. And but you know, we both met you know, we both knew he meant like, is your blood sugar? Good. You know, you're dying. Yeah. And every once in a while, maybe once a month, once a week. I get a false low in the middle of the night because I'd be sleeping on my Dexcom my Dexcom was super sensitive to compression lows. Ya know, cuz
Stacey Simms 20:01
I got those low alerts to
Benny 20:02
every low in the middle of the night, besides one or two of them were compression lows. And it was crazy. But he was following you. Yeah. So so that's where I was going with that he'd text me in the middle of the night, you know, like 1am 2am. And he'd be like, Do you need help? because he'd wake up to it. Sure.
Stacey Simms 20:20
I shouldn't laugh. That's
Benny 20:21
fantastic. And don't get me wrong. I was funny. Yeah, I was fine. And then in the morning, every day, I'd have to go up and like, hug him and say, I'm sorry for waking him up.
Stacey Simms 20:29
But that was really cool. And I probably should have mentioned that already that we did. That was part of our protocol. And then on the other side of things, we decided I would follow, I turned off all my alarms except urgent, low. And the idea was, well, what am I going to do? If he's 50? Right. And I'm in Charlotte, and you're in Tel Aviv. So what we decided was, I would not text you right away, I would wait like 20 minutes or something. And then I would text you if I couldn't get you over text only. And I would text a D, a D. And I think in my head, then I was like, then I'll text the people in New York. And then I'll text the embassy. Like, I had this plan in my software. Forgive me, I was so nervous. But it never got to that point, because let me just give you some credit. The two times there was urgent lows that came in, but they resolved or I could tell that they were fake. They resolved very quickly. There were two times when I texted you and you texted me right back. And that was I don't know if you know how great that was. That helped me so much that you just said it's wrong. I'm fine. It was great. So thank you.
Benny 21:29
We had three Israelis on our bus as counselors. And when then we had two Americans from Camp Coleman. One Israeli was like the main guy, he was our tour guide. I mean, he was also a counselor, but he was he was like the unit head of the bus. But the other Israeli shy. Me Yoni and Shai would went outside on like the third day and your neighbors like just in case I'm not there, I want you to show her how to awake you. So I showed her the hypo pen and the vaccine me showed her how to use it. And I told her on my pump, if the numbers red, use those if it is yellow, do not use those. I don't use them both. Oh, yeah. You know, I talked to one of the others. But like if the number is yellow, do not use those color hospital. Use the thing den call hospital. Every time we moved hotels, we'd get a new room with new people. So every night on the first night, I'd tell them you know where the type of pen in the back seam er, I tell them how to use it. And I'd tell them not to use it. Unless you couldn't get hold of Yoni. Yeah, or shy. If anything happens. Look at the number call Yoni. If you can't get ahold of Yoni calls, you know, keep going up the food chain until you can.
Stacey Simms 22:41
How did they react? Did anybody you seem nervous?
Benny 22:43
Everyone was like, Don't die. You know? Like, if I have to use this, I'm gonna kill you. Everyone's super chill.
Stacey Simms 22:49
Alright, I'm confused though. Red and yellow numbers because I don't want
Benny 22:52
so on the pump. If your blood sugar's low, the number like we're, like tells you the actual number. It's red. And if you're high, it's yellow. Oh, so
Stacey Simms 23:01
you were saying don't give you the vaccine and the hypopyon if you're hot. Yeah, I thought you were saying like, give it faster. You're telling the story.
Benny 23:07
Okay, that was it. Yeah, if if you look on the T slim, it's yelling at me right here. My blood sugar is totally 120 right now. Perfect. I thought you ate before the interview, please. But yeah, I told them on the right side of the screen. There's a number typically with an arrow. If that number is yellow, and you give the hypo pan or the vaccine between me that is very bad.
Stacey Simms 23:32
gone, it's gone. It's gone. Okay, that's why you needed to go to the hospital. Now I get it. I just you can tell I'm very involved parents that I look at all the time. And I know the numbers. You know, you got the T slim right when I stopped looking at stuff. And as a started to stop looking started to stop. But I mean, you were 12 because we're up for renewal. Now you're 12. And that's like, exactly the time when I'm not going to start looking in your pants. Right?
Benny 23:59
Sorry, that was a weird way to word that.
Stacey Simms 24:01
But you know what I mean? Like, I'm not gonna go in your pocket in your pocket. And you do it yourself when you were a little like kind of like give me your pump? Or let me see, you know, or with the animals that we had the remote so it was a lot easier. But yeah, so I don't I'm familiar with the T slim but it's not like you had animals for 10 years and I could like fly through that pump. The TCM I have to put my glasses so
Benny 24:19
funny, because I can fly through this. But it's so funny watching her dad tried to do it once. bless his heart. Oh my god, it was painful.
Stacey Simms 24:32
One of the other things that I was worried about was when you were going in the Dead Sea or doing some of the swimming because not only is the Dead Sea super salty, some of the other places are salty too. But it's so salty. We've been told you have to protect your Dexcom transmitter. I know everything worked out. Did you cover it?
Benny 24:47
I did. And then it fell off in the Dead Sea. The transmitter. No the cover. Oh, so we went in the middle of summer. The water was almost boiling. You're come we're complaining It Like It wasn't unbearable. We all went in for like 10 seconds to see if we could flow and then we ran out when we went Yeah, it was great. I know what it was warm say nice things. Did I not put a disclaimer? I loved the trip, but there was a lot to complain about. So
Stacey Simms 25:17
the band aid thingy cover fell off.
Benny 25:19
Yeah, we had one of the clear, you know, the clear one,
Unknown Speaker 25:21
we got a waterproof check agenda. Yeah.
Benny 25:23
So we got in and it started to peel off. And then I got out and got back in for a second. And it came off. And you know, my Dexcom was fine. Okay, good. That's good.
Stacey Simms 25:33
I guess you could have floated by you would have seen it. Haha. Okay, come off. I did see it. But I'm glad so it did hit the salt a little bit kept working. Alright, that's good to know. Did you wear anything on your feet? Remember, I told you you should bring shoes.
Benny 25:45
So remember those like $20 rubber shoes? I got? Yeah. Those broke on the trip to Israel, like in my backpack. So well. So one of them broke. So I had one on my left foot. And then the one on my right. I was like holding on to with my toes. Yeah. And eventually it just kind of let it go.
Stacey Simms 26:05
But at the Dead Sea, they were able to wear anything on your feet. Yeah, that those good because that stuff hurts.
Benny 26:11
Well, I took them off eventually. Because Yeah, whatever.
Stacey Simms 26:14
Oh, to be on. Alright, so let's talk about diabetes tech and gear and everything. You didn't seem to me like you had any issues we gave you. I said 150% of supplies. I think I gave you 300% of Dexcom and inset so I probably lied. Yeah, so you didn't run out? You didn't have any troubles. It didn't look like you lost anything. Really. I remember texting you at one point. I remember why we were texting. But you said something like, I think I was pretending to joke but really telling you like, hey, make sure you change your insert because I was trying to stay away and not do it. Then I was trying to do like that mom thing where you joke what you're really you know? And you said I just changed because it fell off in the ocean. So did you have an issue with stuff coming off in the water? Or Okay,
Benny 26:57
well, we were only in the water twice.
Stacey Simms 26:59
Oh, there you go. Did you change your inset every three days? Like I didn't.
Benny 27:04
It was either until it stopped working or it fell. I
Stacey Simms 27:06
hate that you do that? Come on, man. Well, my skin heals fast enough for it. So Alright, this is the point in the podcast where I give the disclaimer again that Vinnie has had diabetes for a very long time. He knows what he's doing. We wish certain things
Benny 27:22
worse diabetes mom, but at
Stacey Simms 27:23
some point, I have to kind of let him make some mistakes. And I can only yell at him when he's home. So I'm glad you changed it when you needed to. I can tell by your numbers that you know everything was okay. I will tell you that my biggest fear was not an emergency, although obviously that's very fearful to think about because I knew you had a medic, I knew Israel has good health care, you know, wasn't worried about that kind of stuff. I mean, I was worried that diabetes would slow you down and make you feel different give you problems that your friends wouldn't have. He's smiling. You feel different? Yes, I
Benny 27:54
did. You really Of course. That's what I worry about the most. I thought we got over that face.
Stacey Simms 27:58
You got over it a long time ago. But I worry still that like what I mean by that is by slow you down is you'd be on a hike and you would go low and they'd have to stop and everybody else would go ahead. And then you'd be like with the staff catching up and feeling bad, you know? Or you'd be on a camel, you got to write it down. It's
Benny 28:16
so much fun and so disappointing at the same time.
Stacey Simms 28:19
Are you tell the story then I'll tell you my fear.
Benny 28:21
They hyped us up for this camera ride for a full week. We got on the camels walked two minutes in the direction we were supposed to be heading and then walked back. They made it sound like we were gonna like full day through the desert on the camel. You say
Stacey Simms 28:35
you're gonna adopt a camel and bring it home? Yes, I have never been on a camel. So that's two minutes more than me.
Benny 28:41
Did you know that camel milk is actually designated as a superfood because it has all the vital nutrients.
Stacey Simms 28:47
I just read somewhere. And I'm not putting it in my newscast because it looks like garbage to me that camel milk cures type two diabetes?
Benny 28:54
Because that's real. Yeah, since but I just read that this.
Stacey Simms 28:59
Yeah, this is super food though, right? It's supposed to be really nutritious.
Benny 29:02
It has all the essential nutrients.
Stacey Simms 29:04
Oh, fabulous. But my fear would be that you'd be on the camel, you'd be low. You'd feel lousy, you'd have to get off, right? you'd miss out things. And your friends would be like, Oh, well, you're slowing us down. You know, he's laughing at me. But that's the kind of stuff I worry about that more. Because you're smart enough. The one thing that I really think we've we've really taught you well is that when you need help you ask for it. You don't let things go, right. You're not going to be in pain or feel uncomfortable and not tell somebody and with diabetes. I think that's really, really important. So I know you laugh at me, but I worry about the feeling different, even though you're pretty cool about
Benny 29:42
Well, I mean, I don't worry about that. But it's also the fact that I don't hang around people that would dislike me for something I can't control. I don't interact with those kind of people. You know, if we all had to stop which, you know, we we almost never had to stop for me. I mean, I could I could keep going and drink coffee at the same time. But we stopped a lot anyway, just because everyone got tired. You know, if we stopped because of me, everyone would be like, Oh, thank god we're stopping. With the I don't know, can I? No, no. What the heck, Benny? Thank you.
Stacey Simms 30:14
Alright, so here's a question from my friend Steven, who says at this camp, how often did you think about diabetes, versus how often you thought about diabetes at diabetes camp. It's been a while since you've been to diabetes camp. But
Benny 30:26
diabetes camp, in my opinion, made diabetes feel like a disability, more than anything I've experienced,
Stacey Simms 30:33
will actually tell me more about that.
Benny 30:35
Every time we were doing something, they were like, I don't know how to explain it. It's just everything was centered around it, you know, and someone did their inset for the first time by themselves. But you know, good for you pat on the back, the entire cafeteria would clap for them. Like, while you just conquered cancer. Like, I mean, I don't mean to compare it to that. But like, it's, from my opinion, it's like, they were like, the mindset of the staff was like, you know, even if they did have diabetes, his mindset was like, these kids have the worst life in the world. And I need to try and make it better for a week.
Stacey Simms 31:12
Interesting. Because when you were little when you were seven, or eight, and you did your inset for yourself for the first time, didn't they applaud you didn't that feel good at the time at the time, but like, I look back on it, and it's like, okay, you clap for me, that didn't change my life. If you clap for me, and my pancreas started working again. I think that that's, I'm going to kind of keep this as a time capsule thing, because I think that your perspective may change as you get older, but I think very valid. Right. And you're 16. But I think diabetes camp. I will, we'll agree to disagree. I think it prepared you for camp.
Benny 31:47
It might have but
Stacey Simms 31:49
so back to the question, if you think you can answer it. Did you think about diabetes more or less, less, significantly
Benny 31:55
less, just because everything at diabetes camp was centered around diabetes, and everything was like, Alright, check your blood sugar. Now, I can check my blood sugar when I need to. I don't need someone five years older than me to tell me that I need to check my blood sugar. And that something I've been doing for 10 years is wrong. Because they think it's wrong. You know, they wouldn't let me use my Dexcom as my number until one of the last years I was there. Yeah. And we had been doing that for four years by that.
Stacey Simms 32:21
Yeah. So when you're on a trip like this, maybe because you're the only one, somebody like you who's confident, doesn't really feel like they need tons of I don't know supports the right word. But you don't need a lot of attention to diabetes. And other than yourself, you felt like you thought about it less just enough to take care of what you just take care of. Yeah. How do you do that? Do you? I'm curious, just for a little insight into your psychology. Do you wait until you get an alarm? Are you thinking about it when you're eating? Like how does that work?
Benny 32:47
I wait until I get an alarm. It is not on my mind. until something is wrong. Well, you
Stacey Simms 32:52
pull us for food. Please tell me you bolus for food when
Benny 32:54
you eat. Well, yeah. But like, other than that, other than that diabetes 90% of the time. Unless something's wrong with it. It's you know, there's not on my mind, just in the background. Yeah.
Stacey Simms 33:04
I think this interview was good. I'm not sure people will stop listening to me, because you're so great.
Benny 33:08
I don't know. I think every time I'm on the I'm on the show your views go up about Oh, yeah. I can eat the mic again. If No, please
Stacey Simms 33:16
don't. So Stephen went on to say, is there a lesson in the different kinds of attention? Is there a lesson in there for you as you get older? Or do you view diabetes camp at Camp like this as being completely non related?
Benny 33:28
Hmm. Because my chair gonna say
Stacey Simms 33:30
my answer is that diabetes camp, even though you enjoyed it less as you got older diabetes camp, when you were younger, prepares you to be more independent whether you remember it or not, because I remember Benny before diabetes, can't think any after diabetes camp.
Benny 33:42
That's all I'll say. Yeah. You know, looking at it right now. I think I would have done just fine at Coleman without not without kudos. Definitely. Could I think everyone should go to kudos. It is the best thing in the world. That's for little kids. Yeah, it is amazing. I must have changed, if it hasn't changed, and your kids are right now. But CCT and Morris, they're good for kids that aren't, you know, 100% confident in themselves. But I mean, by the time I was like, 910, I had already gotten comfortable with the fact that I had diabetes, and I couldn't change it. So like, be sad about it.
Stacey Simms 34:16
Well, and that leads us to another question that someone had, Sally asked, Do you ever feel it's unfair that you have diabetes? And if so, how do you work through those thoughts?
Benny 34:25
I absolutely think it's unfair. I mean, it sucks. But the way I look at it, it's just, you know, I can't change it. What am I going to do about it? Why be sad about it, and then I move on.
Stacey Simms 34:35
You've always kind of been that way in terms of accepting diabetes. And since I mean, when we're very young, you didn't really understand what's going on. And then once or twice in middle school, you had some real like, I'm really upset about this, but we just talked it through. Do you remember ever kind of feeling differently or have you always you're just such an easygoing?
Benny 34:53
Every once in a while when like two or three insects wouldn't work, and like I had to change my Dexcom my inset and my car. At the same time, I lose my transmitter, you know, every once. Every once in a while, it's like, this sucks. But I mean, that comes around so rarely. There's so very little times when I genuinely can't do something because of diabetes. There are times I can't do things, but not because of diabetes. But I've learned to just what are you gonna do?
Stacey Simms 35:22
I think to the fact that we, I mean, I'll pat myself on the back, I guess a little in that we've never really told you. You couldn't do it. Let you do all these crazy things, even though I'm at home, frankly, wanting to puke. What was I thinking? But we'll let you do it. And hopefully that helps with your attitude. I'm hoping it helps you you know as you get older. It's the worst. All right, we got to start wrapping it up. Now. When you Okay, so you hurt your foot while you were there. You can tell that story if you want to in whatever detail you want to but I'm curious when you got to the doctors in Israel, he kicked your kicked a coral there. So
Benny 35:57
over, you know, a couple events happened I ended up getting a pretty nasty infection on my foot.
Stacey Simms 36:01
When you saw the doctors in Israel. What did they talk to you about diabetes in anybody's feet? Sometimes people get the wrong idea and freak out.
Benny 36:09
So I don't really know what the healthcare system is. Because everyone spoke Hebrew. I just kind of went along with it. I was shy. Um, so she was translating. Yeah. Well, she just told me Okay, we're gonna do this now. I mean, I felt perfectly safe,
Stacey Simms 36:22
I'm sure. But she speaks Hebrew and English. Yeah.
Benny 36:25
So we get into the clinic. We go to the front desk, we tell them what's wrong. They said, Okay, wait here. She told me this process normally takes about four or five hours. We were done in like, 45. That's great. We go in to the room. We sit there for maybe a minute waiting for the doctor. He comes in. He takes like two looks at my foot. He like touches it for a second. He's like, does it hurt? And I'm like, sometimes he's like, yeah, it's just really bad infection. So he gave me a prescription for antibiotics and antibacterial cream. And then we went to the pharmacy and got him.
Stacey Simms 36:55
So there wasn't a lot of discussion about him diabetes, nobody
Benny 36:57
asked No. I mean, it wasn't even a thought.
Stacey Simms 37:00
All right. Well, I like that. I don't like that. I mean, obviously, you can take antibiotics. It's not a big deal. But you know, it makes me a little nervous.
Benny 37:07
If I was concerned.
Stacey Simms 37:09
I know. I know. And then the opposite spectrum is they go they fuss over feet too much because they might go Have
Benny 37:15
you ever told the river told the story about Yes, Simon will tell it again real quick.
Stacey Simms 37:19
Can I tell ya, basically, about two or three years ago, at the end of camp, Vinny had a large blister on his foot and went to the infirmary to get a band aid for it. And they sat him down, they soaked the foot they called me they made me promise to bring them to the endocrinologist. They were very concerned with his footwear. They wanted special diabetes socks. Now listen, as you listen, if you're newer to diabetes, neuropathy and feed can be a big issue. If you've had elevated blood sugars for years. It's not going to happen at a 14 year old type one with Goodyear one sees what happened was I finally and I yelled at them, Benny. And if you heard, but I got on the phone. I said, Give me Benny and he got on the phone and I said, are they scaring you? Like did they make you think there's something wrong with your feet like? And he was like, Mom, it's fine. It's fine. I was just terrified. They were gonna put thoughts in your head that didn't belong there. And then I wasn't gonna bring you to the endo, because we didn't need to. But finally, when I saw him, we told him the story. And he was like, should I examine your feet? And he was like, No, it's fine. All right, it was great. He was like, Okay, are you good? You're good.
Benny 38:18
I think the funniest part of it all was, so there's one nurse there every year that's only there for the first few weeks, which is a shame. She is the best. She knows that I know what I'm doing. And trust me, right? So at the nurse's office at the camp, there's the front desk, and then there's a closet in the back with all the meds. I just kind of go to bed and get ready. But you know, most of the other nurses are like, Oh my god, what's wrong? You okay?
Stacey Simms 38:41
That's Karen, by the way, who you love.
Benny 38:42
I love Karen. So Karen, who had like, was either in the process of leaving or was leaving the next day. And she walked in after everything had happened. You know, she wasn't there yet. And she was like, Benny, what are you doing? That's like, they made me do this.
Stacey Simms 38:59
It was fine. It was all fine. Yeah, no,
Benny 39:01
I'm not mad. I just think it's funny. You
Stacey Simms 39:04
roll with those things very well.
Benny 39:06
Okay, so the camp director of Coleman is leaving, which is very sad. I love Bobby so much. I mean, him I have a pretty good relationship. But here's a video of him going on the zip line over the lake, and he flips upside down. And it is so funny. I will show you later.
Stacey Simms 39:19
Okay. He loves you. I think he appreciated that you took on the challenge of going to regular camp with diabetes, and they've always been very good to us. Um, but start wrapping this up. Are you glad you went with all the
Benny 39:30
work that you had to show? I am so happy I went I'm so happy you guys. Let me go. It was amazing.
Stacey Simms 39:36
What would your advice be to other kids that are looking at programs that are that are difficult like this?
Benny 39:43
Take a job Oh, it is gonna be fine. If you know what you're doing at home. You know what you're doing anywhere. If you trust yourself enough to go out to dinner one night, I think you trust yourself enough to go somewhere without your parents for a couple days. It might not be a month long trip. in a foreign country, it might be to your friend's house for a couple days. But if you think or know, you trust yourself enough to be able to take care of yourself for a couple of days, I think you should go for it. You're always going to have someone with you, or at least you should, that cares about you, and will do things that you need for you.
Stacey Simms 40:19
Right as a minor. Yeah, on these programs is what you mean, right?
Benny 40:22
Yeah. Especially on these programs, there's always going to be at least two or three people that can and will help you with whatever you need. I will be your question for you.
Stacey Simms 40:33
You don't have to answer this. We stress experience confidence, responsibility over perfect numbers. Do you sometimes worry about your health or your numbers? or Why? What Why do you feel good about it? I mean, I think you're doing great. I don't want you to think you're not. But you're a one C is not going to be 5.8.
Benny 40:50
I mean, my thing is, you got to enjoy life. You can't worry about every little thing all the time. If your blood sugar goes high, your blood sugar goes high, darling, give yourself some insulin and go to have some damn ice cream. Sorry,
Stacey Simms 41:05
well, when you're high,
Benny 41:08
but like, if you're 200, and your friends want to go get ice cream, go give yourself some insulin and go get ice cream. Don't say no, because you don't want your number to be perfect. Can I tell them the celery and kid crying in the corner joke you can try. So we have a joke. There are some parents that are really strict with their kids. And those kids eat celery and cry in a corner all day.
Stacey Simms 41:29
And I worry sometimes that the kids eating celery and crying in the corner are going to be healthier long term.
Benny 41:34
So the thing is, you know, they have perfect most kids that are eating celery and crying in the corner have perfect numbers. I don't have perfect numbers. And I'm doing not crying in a corner. I don't think there's or you don't like to watch it. But I mean, it gets the point across you know, unhappy perfect numbers. You know, you might live a full life and have perfect numbers. If you do good for you. You're top 0.1% of diabetics. But there's no point in worrying about being perfect all the time. Because it's unrealistic. And it's not fun.
Stacey Simms 42:06
So the last question here is when you came home, I said it's going to be really hard for me to feel good about nagging you all the time since you just did a month successfully away from me. You're going to be a junior in high school. We're looking ahead to college. So I was joking. And I said I want to try to be here just for customer support. Like you tell me when you need me and I'm here for you. I don't want to be in your face anymore reminding you. It's been three weeks. This has been so hard because you're in my house and now I see everything and I know what's going on. How are we doing on that? Or is this a good situation? This is perfect. Oh God, I was hoping you wouldn't say that. I want to make you more
Benny 42:42
you good. You have done great. You have done wonderful. And if you want to get a bit more naggy you can get a bit more naggy it's not gonna change anything. But
Stacey Simms 42:50
all I want is for you to change that instead every three days. Put it on your calendar. I don't
Benny 42:54
use my calendar, only old people use. It's the worst. But I'll try harder.
Stacey Simms 43:00
Okay, thank you. I appreciate that. Thank you very much for joining me, I appreciate you coming on. I as always, I don't know how much of this I can actually use. We see Dr. vanderwaal. Next week, we go back to the end or next week so you can tell him all about your adventures. In fact, I need to take all the forms with us for Dr. V next week. Because we need your DMP. And you're I'm looking for the forums he's making fun of me looking around because we have a we have a DMP we have your 504 I gotta get all that stuff. My 401k
Benny 43:26
I have one it has $7
Stacey Simms 43:30
you really do from the grocery store. Alright, we'll leave it there. Benny, thank you so much for joining me, I appreciate it. I'm so glad you're home safe. Love you.
Benny 43:39
If your listener count doesn't go up for this episode, I'm suing
Stacey Simms 45:24
you're listening to Diabetes Connections with Stacey Simms. Oh, boy, so you tell me good idea to put them on the show? Let me know what you think. And I will link to our other episodes with Benny. And you know, when he was younger, and maybe had some different opinions about things, you can listen to those at Diabetes connections.com, click on the episode homepage.
I also want to mention, I realized that we left out a question that you may have, which is how did we keep the insulin cool? How did we keep the supplies cool, as you heard Benny talking about, you know, hiking through the desert and swimming in the Dead Sea and all that. And it was very, very hot in Israel at the time that he was there. And so the backpack that he carried with him that had about three to five days of supplies in it, we had the vial the Insulet vial that he carried with him in a frio you know, the pack that you can wet, we've talked about this many times before it keeps insulin at room temperature does not keep it cold. But it was a little free to pack that he could keep his vial in. And we also use a vivi cap. And that was new for us. And that's something that you can only use on pens right now they're working on vials, but that worked out really well. And you take the cap actual cap off your insulin pen, you slide the Vivi cap on it, it's it just looks like a bigger, fatter insulin pen cap. If I'm describing it correctly, I'll put a link in the show notes too. And it's got a little battery in it that you don't have to replace it lasts for a year. And it keeps it room temperature just like a frio. And that was phenomenal as well, because the that pen was really there as a backup and he uses vials, but he'll use an insulin pen as a backup. If he needs to take a shot if he needs to pull the insulin out and stick it in his pump, that kind of thing. And that lasted the entire time. He actually never used the pen which surprised me. He says he actually forgot it was in his bag. So when he came home, we decided to see how well the Vivi cap worked. And we pulled the insulin out of that pen it had been at that point five weeks. So longer than you're supposed to use insulin, FDA people don't listen, we put in his pump. And that backpack had been right through the desert 100 degrees or more with him the entire trip, the Insulet in the pen worked fine. So big thumbs up on 50 cap, I'm not an affiliate, I may they may become advertisers in the future. They are not advertisers. Now there is a promo code, I think flying out there from the episode we did with them, I'll have to check and see if that promo code is still valid, but I don't get a kickback from it. But that product worked really well. But that's how we did it.
And the rest of the supplies were kept on the bus or you know, in the hotel, those were kept cool while he was traveling. So he had a separate backpack that he would pull from. So the main supplies for the entire month were kept in one place. The backpack supplies were for three to five days were kept with Benny the entire time. So it was an interesting way to do it if you have longer term travel stories. We've talked to a lot of people who've traveled the world with diabetes, I'd love to hear more. I'm always interested in packing kind of stories, or don't want to tell you about my really low point when he was gone because I had some some very nerve racking moments. But I had one that I want to tell you about for sure. And I was so lucky it happened while I was at the friends for life conference.
So I'll tell you about that first Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is about helping children become more independent. Be careful what you wish for. Those transitional times are tricky. elementary to middle middle to high school. I mean, you know what I'm talking about right? Using the Dexcom makes a big difference for us. And it's not all about sharing follow up. That is helpful. Think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four to five finger sticks at school or for a second grader to just show their care team the number before Jim at one point Benny was up to 10 finger sticks a day and not having to do that makes his management a lot easier for him. It's also a lot easier to spot the trends and use the technology to give your kids more independence. Find out more at Diabetes connections.com and click on the Dexcom logo.
So every summer when I send Benny away for four weeks, when I send my daughter away for four weeks, both of my kids went to the same camp they both went away for you know, a month every summer since they were eight or nine I would get the same kind of questions from all of my friends. Don't you miss them? How can you send them away? You know, don't they miss you? Aren't you worried about them? And that are my diabetes friends, I would get lots of different questions right? Like how are you doing that? If the camp is not a diabetes camp, you don't you freak out when you can't follow him because we never use share and follow at camp, all sorts of questions and worries and things like that. So I honestly didn't talk a lot about this Israel trip other than to a few close friends because I knew that being around other moms with type one would be supportive. Like most of Would be great. But I also knew that some of the questions would make me even more nervous than I was. And I was really nervous about this.
Letting Benny get on that plane. I didn't even go to the airport. When we dropped him off in Charlotte, my husband had to take him to the airport, because I knew I would just be so so nervous. And I didn't want to make Benny embarrassed or freak out. I mean, he's so calm and cool. But I didn't want to pass that nervousness off to him because I knew he was ready. And I knew he'd be safe. I knew this was a good group of people. But I was freaking out. So I didn't even go to the airport to drop him off. I made it I did. Okay, the first couple days were very, very, very hard. But when I got to friends for life, which was what about two weeks in, I felt great. And people were, you know, we were talking about it, and they were very supportive. But I also felt, I felt really, almost more nervous in a way. And I still don't know exactly what that was all about. But I think part of it was, I had worked out a plan. And I'll be very frank, I had worked this out with my therapist, I've been seeing a therapist for a couple of years, not just for diabetes, but because life is just so freakin stressful anyway, but we had worked out a plan that I thought was really good, I would only check Benny's numbers. And I shared this on an episode a couple weeks ago, I would only check his numbers at times of day that I decided I would check them twice a day, we had turned off all the alarms, except for the urgent low. And I did that I did that October of 2020. That had nothing to do with Israel. That's just in our developmental teenage plan that has worked really well for us. So I only had the urgent low. And I said, I'm only going to check it at these times of day.
Well, when I got to friends for life. We were all having like a mom meetup. And everybody threw their phones on the table. And I really should share this picture. It was fabulous. Whatever your kid is, you know, who cares high low out of range in range, whatever. Let's all show at this moment of time where our kids number is. And I didn't do it because it wasn't the time of day to check his number. And I just didn't want to do it. And they were like Liz, that's a great group of moms super supportive. They were laughing everybody was doing it. And finally I was like, Okay, I'm gonna peek. I'm just gonna peek. And wouldn't you know it, he was 78 double arrows down. I didn't get alarmed. Because as I said, All my alarms were off except urgent, low, and I burst into tears. I just all came out at that moment. It was so stressful. It was so much. I'm not sure be dramatic. I mean, you know what I'm talking about. But 78 double arrows down. And I'm 1000s of miles away. And I don't know why it hit me so hard at that moment. Did I feel left out? Because I couldn't just look at my kids number. Did I feel left out because I had taken you know what many would consider a big risk? Did I regret it? I mean, I'm still having processed all those feelings. I'm still working it out. But oh my gosh, did I get hugs? Did I get support? Did I get people who understand? Thank you, Heather. And thank you, Heather, my to Heather. Thank you to everybody who really made me feel okay, and not judged. And of course, a few minutes later, that number turned around, you know, I didn't call him it wasn't part of our agreement. It turned around and he was fine.
Now, later that night, you heard Benny and I talked about that one urgent load that I called him because it was like 20 minutes, and I kept going off and it was a compression low. It was fine. And he texted me back right away. That was actually that same night, but much later, it was about 11 or 1130 our time. So you know, he did what he was supposed to do. He communicated with me, but boy was I excited to have my community around me when I needed them the most. Nobody understands like we do. Nobody understands that pit of your stomach feeling. I knew he was safe. I knew he was okay. But still. Oh, diabetes. I'm sure I'll be sharing more about this experience. If not the months, the years to come probably we're still learning a lot from it. I hope to be able to you know, give some wisdom. Maybe some advice about just you're down the block sleep over because of it. interesting note. I can't say we paved the way for anybody. I don't know if I've mentioned this, but he was not the first kid with type one to go on this trip. Kudos to those other parents. I obviously don't know who they are. But knowing that other kids had done it certainly made us feel better. And it made it easier because the program knew that it could be done right. The leadership of the program knew it could be done.
Thanks so much for listening to all of that. I really appreciate it.
All right. Thank you as always to my editor John Bukenas from audio editing solutions. Thank you for listening. Our Wednesday, newscasts are growing strong. I'm so happy I decided to do this. It is so much fun. And it's really taken off especially over on YouTube. If you don't catch it on Facebook Live and you want to watch it with captions, the YouTube channel, just Diabetes Connections. And I'll put a link in the show notes to YouTube. Check us out over there. But the newscast is every Wednesday live on Facebook at 430. And then I loaded to YouTube and it comes out as a podcast episode on Fridays as well. And if you're not familiar with that is all the latest headlines for diabetes, all types of diabetes for the past week and I love doing it. That's been a lot of fun. Alright, I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
A Disney vacation can seem overwhelming, even without diabetes. Add T1D to the mix and going to Disney World or Disneyland seems like it may not be worth the stress. This Classic Episode has great tips and advice to have fun without slowing down (much) at the Disney Parks.
Stacey is joined by Disney expert Robyn Adams. Not only does she run the annual Diabetic Mousketeers event, she has three generations of type 1 in her family. We talk about dos and don't for getting a disability pass (and how to decide if you need one), making do without carb counts and managing everything from hydration to ALL the walking at the parks.
This episode first aired in December of 2015.
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Episode Transcription (beta version)
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of Did you know stuff?
Announcer 0:13
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:19
Welcome to another classic episode of the show. As always, we're really glad to have you here. And these episodes, give me a chance to take a look back at some of the real early interviews we did here on the podcast, you might have missed this one. From December of 2015. All about going to Disney World. A Disney vacation is really like no other. And not only is it pretty expensive, but to get everything you want. You really need to have a plan. Seriously, have you been there, you need a plan. Now I have to tell you true confession. I am a bananas, Disney planner. I absolutely love planning trips like this, this may not be your cup of tea, maybe you're somebody who just goes with the flow. But I really think that if you have diabetes, you know if your kid or you as an adult, are going on a vacation, where you have to do this much walking this much line waiting, although we don't wait in lines, and I'll share my secret in just a moment.
This much weird food or strange food, the whole Enormousness that can be a Disney World vacation. Once you add diabetes to the mix, there's a lot to think about. That's why I was really excited to talk to Robin Adams. She is a Disney planner. She's a travel agent, she also runs a really big group that goes to Disney World there. They're on Facebook as well. She just knows her stuff. She also has a husband, a son, and a father in law who all live with type 1 diabetes. And as you're listening and planning vacations, you know after people have been vaccinated, and things are starting to open up again, as you're planning vacations and trips and you know, going back to Disney parks, or maybe the first time you're going I really hope this episode will help. I have to tell you though a little bit about my planning and why I am the way I am and I kid you not we really do not wait in lines. My family has been very lucky. We've taken several big trips to Disney World. We haven't been to Disneyland. But we've been to Disney World several times, not including quick trips. My parents are two hours south of there. And we do go to the friends for life conference which is in Orlando in July usually. So I'm not counting that because that's not a true what I would say you know, Disney couple of days or even a week in the park, that kind of thing. vacation. The very first time we went was with Lea was just four years old. And we just went for a day. We didn't even take Benny he was one left with my parents. We drove up from their house took that to overdrive. We ran all over the place. We had a great day it was in January, it was cold. So you know there really wasn't anybody there. But we met princesses. We had a princess dinner and then we headed home.
So that was the first time the second time when I took both kids. I didn't plan well at all. We arrived at one o'clock in the afternoon during spring break. Those of you who have been there and done that are either laughing at me or horrified. I've never seen that many people in one place in my entire life. We got to the Magic Kingdom at one o'clock. And it was so crowded. I didn't think we'd be able to move. And I was really concerned for my kids safety. We stayed I want to say an hour, I think we did. I don't even know if we went on a ride or did anything or saw parade. I think we saw one parade because we were just stuck there on Main Street. And then we left and we spent the afternoon at our hotel with the pool, which the kids thought was the greatest thing ever. I mean, they had such a fun time in the hotel. And then the next morning, we woke up super early and got to the park, I have a picture of us on the first boat from the Wilderness Lodge resort. And the moon is still out. I mean, we got to the park as it opened, you know, and it was spring break. So it's probably open at seven o'clock that morning and had a great, great three hours. And it was amazing. And that was the beginning of my Disney planning. And I have never gone back without a better plan that I'm going to talk more about it after the interview. Just some tips and tricks that I can share with you diabetes aside what I think you can do to make your vacation a lot more fun and make your money go further. But that is neither here nor there. We will get to Robin Adams to true Disney with diabetes expert in just a moment.
But first, this episode of Diabetes Connections is brought to you by inside the breakthrough. If you're intrigued by science, you don't get excited about the process of discovery and want to have the best stories at your next dinner party. This is the show for you. In the current episode they're asking and answering just snake oil actually contain snakes. Host Dan riskin is phenomenal. He is very entertaining and he really digs deep into these stories search inside the breakthrough anywhere he listen to podcasts. It'll be wherever you found this one. And this podcast is not intended as medical advice if you have those kinds of cases. Please contact your health care provider.
My guest for this classic episode is a travel agent, a Disney planner and the organizer of the diabetic Mouseketeers event. And that is happening this year, Memorial Day weekend, I will link up the information from her website. And you can learn more about how Robin Adams wants you to meet families share stories and experience the magic. It was excited to talk to Robin not just for the Disney experience here. But also because as I mentioned, she has three generations of type one in her family. So she really knows her stuff. quick heads up, we spend the first few minutes of this interview talking about her family and those three generations. If you're just here for the Disney stuff, then you should fast forward about seven, eight minutes in that we pick up the advice for going to the parks. Robin Adams, thank you for joining me. Welcome to Diabetes Connections.
Robyn Adams 5:59
Thank you for having me.
Stacey Simms 6:01
Before we talk Disney and we're going to talk a lot about Disney. Let's talk about about you tell me about your Diabetes Connections. Because this isn't just your child, your husband has type one as well.
Unknown Speaker 6:12
Yes, my husband had been married to for 19 years was diagnosed when he was 12 years old. So it's been an you know, part of my life for I've known him for 21 years now. So it's been there for a very long time. And then our son was diagnosed at age four, after we've been married for seven years.
Stacey Simms 6:32
What's that, like, from your perspective, and I'm sure your husband's is a bit different too. But when you have lived with type one with your spouse, but then your young child is diagnosed, how different was that?
Robyn Adams6:45
It was very overwhelming because the way we handled it in our marriage is my husband already had a mother. So therefore, I did not mother him I did not hound him. I did not say Did you check your blood sugar today? Are you supposed to be eating that? You know, I had no involvement whatsoever. He handled everything. Then there's also the drawback to that in the essence of I didn't really have a fully under standing of the disease. Because I was, you know, I was always kind of at an arm's length distance a little bit out of respect to him. Because I didn't want to hound him. I didn't want to stand on top of him. And you know, mother him basically. So we always kept there a little bit of distance. So when my son was diagnosed, Rob was still doing it the old method of three shots a day, using two different types of using the in in the art, he was doing the old fashioned mph method. Wow. And so he was not carb counting. He was not on a pump or anything. So when my son was diagnosed I was I literally had this fear, go through my head, oh my gosh, we're gonna get divorced, I'm going to kill my child. I don't know what I'm doing. No clue whatsoever. And since Rob was doing it, the old method, it actually was a crash course for both of us, which was wonderful. And honestly, diabetes did nothing but bring our family closer together. It gave me much more insight as to how it affected him day to day. He helped me see what my son was going through. And just he really helped to keep me grounded from not overreacting to certain things to show him that yes, he can survive. Yes, he can do this. It's okay. Not hovering, and just helping him live a full and enriched life because that's what Rob did for years and years through college. He was an avid rock climber, camper, hiker, everything. And he did all of that on, which kind of astounds me doing it on the NVH method, and not carb counting kind of overwhelms me with that thought. Yeah. Wow. So
Stacey Simms 8:57
did he change his diabetes management at all, seeing what your son had access to?
Robyn Adams9:03
Well, it was interesting the day that Robert was diagnosed, that Robert was diagnosed on a Tuesday, Rob was at his doctor on Monday right before getting fitted for his pump. Wow. And they he was supposed to be in his own carb counting education class Tuesday afternoon. Well, at that point, we are admitting Robert into the hospital for diabetes. And we had he had asked his doctor the day before he had said, we're starting to see a few signs and robber what, what do we need to do about this? And the doctor said, we'll go ahead and take a fasting blood sugar the next morning. And so we did it. We've checked Robert blood sugar ever since he was six months old. I checked it every six months pretty religiously, just keeping an eye on it. And but I tell you that one morning that was the hardest blood sugar to check because we had actually started seeing signs at that time. And we knew for a fact that's what it was and We checked his blood sugar was 158. And we called the pediatrician. We call him my husband's endo, and said his blood sugar is 158. And the guy said, well, that's not too bad. We said, this is fasting blood sugar. I said, Amy, call your pediatrician right away. And by the time we got into the pediatrician, his blood sugar was 425. And we were off to Scottish Rite. And that was it.
Stacey Simms 10:23
Now, from your son's point of view, though, you're four years old, and your dad has type one. And your dad is about to be doing the carb counting classes and the pump classes and a lot of things that you yourself as a four year old are going to be going through. Was he kind of do you think he thought at any point? Well, everybody's dad, everybody goes through this.
Robyn Adams10:41
Already? That was cool. Oh, yeah. He can't wait for me to be diagnosed. Yes, Robert, is now 12. But uh, you know, for years, it was the topic of conversation of Okay, Mom, what are you gonna have diabetes? What are you gonna join our club? Yeah, he doesn't under you know, he understands. But at the same time, it's like everybody else has it. Why don't you you know, and see on top of that, to my husband's father also has type 1 diabetes. Wow. So it's just it's a family tradition for this whole sailing. And Robert is waiting for that shoe to drop for me. That's funny. We were very fortunate when he got diagnosed at four, because he just he doesn't understand life without it. And he grew up watching his dad do shots and check his blood. So he became more like his father. And it just became even more of a way of life for all of us. Wow,
Stacey Simms 11:33
that's a remarkable story. Is your husband's father still alive?
Robyn Adams11:38
It has.
Stacey Simms 11:40
I always ask about things like that. Because I think for some of us, who had no experience with type one before my child was diagnosed nine years ago, and I didn't know anything about type one, really. So I'm always impressed. I think that's the right word. But I always like to hear about older people. How old is he?
Robyn Adams11:57
He is 7374 74. And he was diagnosed in his 40s. Wow. Which is, to me just wonderful that they caught it at that time as type one and did not try to label him as type two,
Stacey Simms 12:15
right? We hear a lot about Miss diagnoses like that.
Robyn Adams12:18
Exactly. That was that's always my biggest concern. When I do hear about adults going in and being diagnosed. And either their, you know, the parents of children that I know or spouses and I'm always so quick to say please, please make sure that they truly truly know that it's type one and not type two, just because when it goes overlooked for so long, they get so sick.
Stacey Simms 12:42
So, um, do the three of the boys talk about this? I mean, it just must be so funny to have. I don't know if that's the right word. Let me start again, is it do the three of them kind of compare notes?
Robyn Adams12:56
They do to a point, Wesley does still do the mph method. He's 70 or 74 years old, he's been doing this for a long time, you're not gonna change his method. You know, that's just the way it is. So they do compare stories, and Rob will try to give them helpful tips or try to say, you know, I really wish he would try to do it this way. And now He's good. He's got his way down. But you know, you just have to look at it from the perspective of the individual with the disease. You know, they're the ones who juggle and manage and live with the disease, if they're setting their routine and their way of doing things. It's really hard to get somebody to change, you know, because change could mean big things, good or bad. It can mean big. So we just try to step back and, you know, respect and understand that that's his perspective. But they do they talk about it a lot. And it's nice to have, you know, to two boys in the kitchen, treating loads together, things like that, you know, there's just kind of that understanding in the household that okay, this is what it is. We've got to stop, take care of it, and then we'll move on from there.
Stacey Simms 14:07
Let's move on to talk about Disney. How did you get involved? Your certified Disney planner is something you always loved.
Robyn Adams14:16
It is. I mean, I started going we started taking Robert when he was three. And it just kind of grew into a natural obsession to where we were going several times a year. And then a few years ago, we were in a position where the main business that I had, I was a home appraiser was starting to dwindle due to the economy. What gave you the idea to take your
Stacey Simms 14:40
Disney planning and diabetes and put the two together?
Robyn Adams14:44
Seeing the need for it. Seeing the questions on Facebook pop up over and over again. I'm going to Disney What do I do? Seeing the overwhelming feeling and feeling the fear come through people's post of how they just needed somebody to hold their hand for a few minutes to say you can do this. A lot of people once you've done Disney, you do understand you know, the loops, you know everything. But especially when you've been a first timer and you've never been, first of all Disney in itself is such an expedition, just dealing with all the ins and the outs, the resorts, the dining plan, the tickets, the four parks, the two water parks, then you've got Disney Land with the two parks over there, the rides, the attractions, the characters, taking all of that in, because you're investing a lot of money into this trip. So you want it to be just perfect, then when you throw diabetes into the mix, knowing that that could make your magical trip that you want to be so perfect, quite imperfect. It's a very daunting task for individuals. So I started to hear that in the post and started to see it and just realize that there was a need for it. So I just decided that Well, um, you know, this is what I do, I'll just start kind of tailoring all of my planning towards focusing towards families with diabetes.
Stacey Simms 16:09
And you do an event, we'll talk about the event once a once a year, right for families with diabetes. But before we talk about the event, let's get some advice. I mean, we've been to Disney many times, I'm what I would call myself a crazy planner. So I I take care of stuff. I'm good to go. I wasn't all that concerned about diabetes. But that's me. So if for people who are concerned and really worry, you know, where do you start them because as you said, Disney, in and of itself is a huge, huge vacation to plan.
Robyn Adams16:42
Really, I start mostly with explaining. For those who have never been to Disney, I explain what seems is basic knowledge to you and me who have been there 100 times explaining that they can take food into the parks, they can take a stroller into the parks, they can take their supplies into the parks. And you'd be amazed at just hearing those three things. Make them feel 100 times better. You know, just the simple fact that you can take in low blood sugar snaps you can take in your water, things like that just immediately helps parents feel a little bit better. Because that's their biggest fear is what if I get stuck in a line with a low blood sugar? What do I do? They need to know that they have access to their supplies at all times.
Stacey Simms 17:26
And you do I mean we've had that situation happen. We've had highs we've had lows, we've had to sit down in line for Peter Pan when my son was four and treat a low and we always had our stuff with us. And I love with Disney. You don't have to stash things in lockers like you do if you go to Universal.
Robyn Adams17:43
Universal you do
Stacey Simms 17:44
right you do to put things in lockers, although I have to tell you I am always the fashionable one with the small fanny pack. I look so cool. But a fanny pack is they'll let you on the rides. Even universal so I love the fanny pack is in my opinion is the way to go. I don't care how silly you look. I rocket my kids are mortified. I am embarrassment level expert. But it's much easier. I don't have cargo pants. I don't have all those pockets. But I like the fanny pack. Alright, so you can bring your low supplies in. You can have a stroller for little kids, you can rent one or you can get one for free at Disney. What about i would i always warn people about the amount of walking because man even though we've been several times, I always forget how big it is.
Robyn Adams18:24
Yes, you walk seven to 10 miles a day. Wow. Yep. And that's one reason why I push a stroller especially for anybody ages 10 and under. They they just don't realize the magnitude of what walking will do to the blood sugar. And even though I send children that are top athletes, you know as far as they are involved in a lot of competitive gymnastics, or baseball teams, football teams, all of that. She amusement parks are totally different creature. Totally different creature. You're just not prepared and no two children have the same reaction at the park. They can be high, they can be low, they can be both. It doesn't matter. You know, Robert started out when he was little, he would go low so often that we stopped doing insulin during the day and we would only do his lantis at night. That was all he needed. Yeah, because we would go into a meal and his blood sugar would be 80. And if we gave him his insulin within two hours, his blood sugar would be right back down to 80. And then we're having three lows the rest of the time. So we just when he This is when he was much younger. We just constantly treated semi loads. We stopped doing his mealtime insulin and he did great. Now as he's older I battle just as many highs as I do love all then he can spike up to 425 just as fast as he can drop drop to a 50
Stacey Simms 19:44
and I guess then the ultimate thing to bring some flexibility and some patients because a lot of people out there want the same result every day. And that's just not gonna happen.
Robyn Adams19:54
They do. I remember hearing a story one day of someone who changed somebody's child Pump site for different times in one day, oh, perm, and that that's what it was. And it wasn't had nothing to do with pump site. It's all the adrenaline, all of the craziness, the excitement, the heat, the dehydration, anxiety, everything. And I know the one thing that everybody gets most frustrated with is the fact that Disney does not provide carp counts.
Stacey Simms 20:25
Yeah, what is with that? I mean, we're beyond it at the point where you can we guess pretty well and everything but
Robyn Adams20:29
Right, exactly. That's kind of where we are.
Stacey Simms 20:32
I was really surprised they do so many things so well. But they don't do that.
Robyn Adams20:37
They don't, that I have been told it's due to the ever changing menu, all the different restaurants, they're changing their menus constantly, that they just can't provide it. I think another reason could be liability. But then when you think of the allergy liability that they take on with saying that certain restaurants don't have cross contamination, things like that, it's as much of a risk, but I just wonder if it's the liability of truly saying, Okay, this is absolutely, you know, this item has 12 carbs in it,
Stacey Simms 21:09
well, they're gonna do carbs, they probably have to provide all of the nutritional information. That was my thinking is that for some reason, it's just become, it's too much for them. But I, I'm really still surprised by that, especially when they do allergies. So well, they, we don't have food allergies in my family. But I've heard from so many friends and family who go, who say that's the place where they feel safe.
Robyn Adams21:29
It is that is that is the one thing that I hear over and over again, that is the one place that they do feel safe. So but one thing I do tell people is okay, so yes, it is true, Disney does not provide card counts. However, I have heard that a chef will come out and speak with you about how a meal is prepared. And that does help with any possible hidden ingredients that are in there. For example, over at the garden grill, they have a an oven roasted turkey that they do, well, they put a brown sugar like honey glaze on it. So that one little piece of information is kind of helpful, you know, for some maybe, you know, little spikes that you might say. But to be honest, when they I do try to explain to people is if you are used to eating out, it's going to be a lot of the same foods that you see eating out. So if you are familiar with going to Olive Garden and getting their pasta dishes or going to just Applebee's and Ruby Tuesday's things like that a lot of the meals you will recognize the buffets for the character meals do have fresh fruit in rolls and fresh salad, things like that. Once you see the food, it's not as daunting as it sounds. And usually what people will find is, a lot of the times they erratic blood sugars that they do start to see is not because they miscalculated the meal by 10 carbs, or 15 carbs. It's because of everything else compacting that blood sugar.
Stacey Simms 23:02
Does Disney supply water cups of water for free?
Robyn Adams23:08
They do. Yes, at any of the quick service places you can walk in and request a free cup of water.
Stacey Simms 23:14
That's something that our we live near Carolyn's amusement park here in the Charlotte area. And that's something that they do. And we take full advantage of that, because that's where we go mostly in the summer. And I couldn't remember if Disney had that, because certainly if your child has high, you don't want to restrict access to water.
Robyn Adams23:29
Right. So Talk
Stacey Simms 23:31
Talk to me a little bit, if you could about the passes now that Disney gives out my full disclosure is that we've never used or asked for a disability pass or guest assistance pass or whatever they're called. So I don't know much about them. Can you share a little bit about what they are and what your advice is about
Robyn Adams23:49
them. It is called the Disability Assistance service accommodation. My advice is, not everybody needs it. And that's perfectly fine. It's nice to get to have just stored in your back pocket, just to have just in case. But just because you get it doesn't mean you have to use it. So sometimes it's nice to go ahead and get it and plan for it. But there's nothing saying that you have to use it. During Christmas time during Thanksgiving, the really, really high peak times it is nice to have it. The way it works is it works like an additional Fastpass. When you go to guest Relations at any of the four parks, everybody in your group must be with you. And when you're going to the Walt Disney World parks and if you're staying on site, then you have magic bands. If you're staying off site, then you have the hard tickets. The Disney the DTS is actually electronically linked to those items. So you're not having to carry anything extra around with you. But you need everybody who you want linked to it with with you so that they can get everybody linked appropriately. And Disney wants to cut down on the abuse. Disney wants to see everybody who's involved. Technically, they want only six people on there. However, Disney does not want to break up groups and break up families. They know that people really want to be together. So they will go, I've seen groups as large as 14 and 16 placed on the DS.
Robyn Adams25:28
And what do you get for it?
Robyn Adams25:31
What you'll do is, you'll get your accommodation added to your magic banner, your park ticket at guest relations. And then like let's say, if you're going to Walt Disney World, you set up a Fast Pass ahead of time to ride Space Mountain at 11 o'clock between 11 and 12. Well, what you do is as you're walking over to Space Mountain, the Buzz Lightyear Space Ranger ride is right next to it, you would make a pit stop, go to the Fastpass line, say we have the DA s, they're going to look at the standby time, the standby time, for example, is going to be 45 minutes, they're going to give you a return time for that standby time minus 10 minutes. So they're going to give you a return time for 1135. If you're standing there at 11 o'clock, for 35 minutes from the time that you're requesting it. So then you're going to go in ride, Space Mountain, use your Fastpass for that, come back to Buzz Lightyear at 1135 or anytime after go through and you'll be able to go through the Fast Pass line at that time. It works as a secondary Fast Pass.
Stacey Simms 26:44
I'm going to ask you a gentle question. Do you think people with type 1 diabetes need this?
Robyn Adams26:50
I do. But I think it is very specific per person. There are a lot of children that go that don't need it. And that's perfectly fine. But there are a lot of children that go whose blood sugars are so much all over the place, that they feel rotten. And this just helps to expedite their day, it helps them to go through the day a little bit faster when they can use the Fast Pass and the DA s together. There are children that have seizures that are heat induced. So it just kind of helps to keep them when you're in the lines at Disney. Like especially like Thunder Mountain, in that you know all of that wood structure. And you're there in June and July when it's so hot. When you're packed in that line of all those people it gets really, really hot and stuffy. If you can be in the Fastpass line, it keeps you on the outside of those people for as long as possible. When you're in the standby line, you're in the heart of all of those people. So it just kind of exasperates the heat that the children might be going through?
Stacey Simms 27:59
Well, because I know you've seen this on on Facebook, you know, some will ask a question. And then it's five pages of judgment. And I asked you that question, because I think it's important that you make the decision as a family. If you think your child needs this and will benefit from it, it's available to you. If your child can stand in lines, and you're fine. And you know, like I said, we've never needed it. So we've never gotten it. I don't know much about it. But I would never judge someone else who feels that they need to use that. And I think it's unfortunate that that happens. Do you have to do you have to prove to Disney that you have type one? What do you do?
Robyn Adams28:33
Know and to be blatantly honest, type 1 diabetes is not technically approved in Disney's mind to receive accommodations. They do not understand diabetes.
Stacey Simms 28:45
So what do you what do you tell them? You say I have blood sugar issues?
Robyn Adams28:49
Yes, just like with any disease or condition that you are going to Disney with an African accommodations. Disney does not want to know the diagnosis, diagnosis period. The cast members themselves are not doctors and they're not therapists, psychologists or anything, so they don't have a full understanding of all of the hundreds of 1000s of different cognitive and medical conditions out there. Okay, so even children with ADHD and autism, there's such a broad spectrum of everything, that one cast member cannot make the determining factor of whether or not you need an accommodation simply based on a diagnosis. So it definitely does not help especially when in when diabetes is concerned to state diabetes by any means whatsoever. So what you do is you go in and you focus on the conditions and what you are most concerned about how you are concerned about lows could possibly induce a seizure, how highs could cause organ damaging ketones, things like that. You want to express another thing reason why I am an advocate of the DEA s pass for Children with diabetes, because it keeps you in that outside lane. Since the Fastpass line wraps around the standby line. It gives you an easier exit. So if you're is if your child is dropping from a low and the resources that you have on you are not enough to bring them up and bring them stable, you can exit that line a lot quicker. Or if your child is having problems with highs and is needing to use the bathroom a lot, they can exit the line a lot quicker to access the bathroom.
Stacey Simms 30:32
So what do you love about disney world? What brings you back time and
Robyn Adams30:37
time again? For us, we feel like it's an escape from our everyday world. It is so interesting how when you walk through those gates, it just literally does seem like you're transformed into another world. It just seems as though everything that you've just dealt with for whatever for the past six months or a year just seem to completely melt away. And you're in another zone.
Stacey Simms 31:00
That's how I feel like let me play make believe for a little while. What do you have? Do you have a particular ride or character experience or dining experience that you love?
Robyn Adams31:11
our favorites are even though my son is 12 years old, we still do Crystal Palace with every single trip. That's right. It's way the Yes. It is Winnie the Pooh. He is a die hard for that restaurant. And if we skip it on one trip, darn it if I don't have to take him twice on the next one. is just that as part of our team. Another love favorite is Thunder Mountain for him. And he also just still to this day love seeing as many characters as he can.
Stacey Simms 31:46
I was really sad when the last time we went, we went and I wanted to see the fireworks. I just wanted to sit and watch the fireworks and my children have no patience for that. That was not going to happen. And we did Thunder Mountain, but we did it during fireworks. That was really cool. Isn't
Robyn Adams32:00
that amazing? Yeah, that was great. We've done that too. And my son absolutely loves doing that.
Stacey Simms 32:06
Tell me about diabetic Mouseketeers. This is an event that's happening in May. What's that all about?
Robyn Adams32:11
diabetic Mouseketeers is a trip I organized five years ago, specifically for families with diabetes. And it can be type one, type two type one and a half, it doesn't matter. It is designed as an opportunity for families with diabetes to go and meet at the parks. It's very relaxed, very laid back. It's just a chance to play. Basically, what it gives is it gives families the opportunity to know that there are other families just like them in the parks at the same time going through the same thing they are. So a lot of the families do end up we end up meeting up most of the time throughout the same throughout every trip every now and then we do have one or two families that get caught up in doing their own thing. And I think that is absolutely wonderful. I want families to know that we're there to support them and be there and hang out with them. But I also want families to feel the freedom to be able to do what they want to do. I organized several different events so that the families do have time to meet. Once they're going to be character greets doing character meals together dining experiences together. I think this year we're going to go to the beach at the Polynesian together and watch the movie out on the beach and maybe under the stars, different things like that. Just to kind of bring that unity in that time for the kids to be together. We usually spend a lot of time at Animal Kingdom doing the Patagonia forest and the conservation station and the safari train or the safari ride just good times for the children to just relax and be together and so my favorite things is watching the children all check their blood sugar's together. Yeah, their favorite pastimes did knowing that they're not the only one.
Stacey Simms 33:58
Do the characters ever react to that? Have you ever had somebody at Disney react?
Robyn Adams34:03
I personally never have. We've just we've never had anybody say anything negative or anything. I've heard stories of it happening. Just somebody might say a or something like that. But we've never run into it. I was
Stacey Simms 34:18
actually thinking the opposite. Like one of the characters would say wow, like give the kids an Attaboy. I wasn't even thinking about the negative but thankfully we haven't run it. Oh,
Robyn Adams34:25
okay. So never, never have just, we've always kind of ducked over to the side. And you know, it's usually because usually the lows come after attractions. Right after being like, for one year, we all were going to ride the safari together. But we needed to kill a little bit of time to wait for our return time for the DA s. And so we went through the Patagonian forest together did lots of walking and everything. Then we finally went on the safari ride together and it was about 1130 and all the kids walked off and every single child except One was under 90. We all went to lunch together. That's funny. Yeah, you just kind of hear all these. I'm low. Caffeine down all the children were dropping like flies.
Stacey Simms 35:15
I'll link up the information for the the diabetic Mouseketeers event that's coming up. Before I let you go. I mean, any advice for someone who's going to Disney World with their child with type one, this holiday they haven't used you to plan. They think they're set any last minute advice.
Robyn Adams35:34
First of all, they are more than welcome to contact me directly for any last minute advice. Just because they haven't used me to plan does not mean that I am not willing to talk to anyone, and answer any of their questions and just help them. biggest piece of advice is definitely take it slow. Take it slow, enjoy it. There's going to be highs there's going to be lows, take in your low blood sugar snacks, take in the snacks that you know work for your child. If you know that Skittles are the dead ringer to bring them up fast, bring that don't bring chocolates don't bring peanut butter crackers, the chocolate will melt, the crackers will crush and juice boxes will pop and sober. So well Capri Sun pouches that comes from experience. definitely take a backpack and just pack it with everything that you feel that your child will need. Your bag will be searched at the time of entering each Park, but they're not looking for food, they're not going to worry about that at all. They're looking for other items. So just bring in everything that you need to take care of your child, we usually walk in with about three bottles of water and two bottles of Powerade. And by the end of the day, it's all gone. Yeah,
Stacey Simms 36:49
I think that's great advice. And I would just pop in and add, it is going to take you longer to get there and longer to walk around than you think. And I'm one of the people who I plan where we're going to be at 911 to eat or we're doing this, we're doing that, and we never get to everything. And that's fine. Just stop, right? Sit down, slow down, do what you can, you're not going to do at all, don't even try.
Robyn Adams37:12
You're not I know people who have been over 100 times and they still don't Wow, at all, and Disney is not going anywhere. I understand that for so many people. This is either a once in a lifetime trip or this is going to be the trip for the next 10 years. And that's perfectly fine. But the bottom line is it's not going anywhere. So whether you're not going back for six months or not going back for 20 years, it will still be there. So it's not worth trying to pack it all in. It's not physically possible.
Stacey Simms 37:40
And Mickey bars do have carb counts on them because they're packaged the Mickey ice cream. Yes,
Robyn Adams37:45
a lot of the free packets items do have the carb counts, or you're going to recognize it. Like for example, in the dining plan for the kids menu comes with a little bitty applesauce on it. Well, that's just like the little knots applesauce that you would have at home. So if you're familiar with that item, there you go.
Stacey Simms 38:04
It's like 12 carbs, that's like a lunchbox thing.
Robyn Adams38:06
Yeah, it's just like the little lunchbox size thing. So and then they've got prepackaged little things are great. You can do that. One thing that families might want to know is especially just for any reason whatsoever. When you have a children's menu, you're given adequate service, like let's say you go to cosmic rays, where you're going to get a hamburger fries, you're gonna get your main dish, you're going to get your side item, and then you're going to get a drink and a dessert, we got really tired of the desserts. And my son is just really picky. He doesn't like them. I always traded my dessert in for an extra bottle of water or an extra bag of grapes. Oh, there was a problem with it. I wouldn't do it. I wouldn't mention anything when I was at the cash register like cuz you know, when you walk up, you talk to the first person and give them your money or your dining plan information when you're placing your order. And then you walk the next 10 feet and go up to the counter. I would always mentioned to the person at the actual counter, it was much easier than for them just to swap out whatever I didn't want. Rather than trying to make the the nice lady at the cash register try to make exceptions or substitutions. That just doesn't work. But yeah, I just asked him to swap it out. And we would always have an extra bottle of water at that point.
Stacey Simms 39:25
Well, Robin Adams, thank you so much for sharing your expertise. I will definitely link up your information about the upcoming weekend in May for kids with diabetes and their families at Disney and your contact information as well so that people who have holiday season is here disease pack so they can get in touch with you and get some last minute advice about Disney and diabetes. Thanks so much for joining me.
Robyn Adams39:47
Thank you. I appreciate it.
Robyn Adams39:54
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 40:00
I'm going to link up all the information about the Memorial Day weekend, the diabetic Mouseketeers weekend that Robin plans. And she's got a really a bunch of good information on her website, not just about that, but about tips for people with diabetes at Disney, and she can book a vacation for you. She's not just about that one weekend. And she is as you would imagine an authorized Disney vacation planner, I want to take another second here and just talk about that disability path that Robin mentioned. And it's always a good idea to check up on that it does change here and there. So I will link up Disney's own explanation about that. So you can make sure you understand it before going in. And I also want to follow up on my comments about why we didn't use it with Benny, we never have. And as Robin said, you know, use it if you need it, no doubt. And the reason that we never used it, well, first of all, was my planning, which again, I will get to in just a moment tell you a little bit more about how I do it. We just never needed it. But also because this was interesting, I didn't realize this until years later, when Benny was about four I think was the first time we took him. And he'd been living with type one for two years already at that point. And the disability pass was presented to me by a very well meaning other parent, I'm sure as like a golden ticket like a prize, you know, it's bad enough that he has diabetes, at least this is one good thing that can come out of it is kind of how they said it. And he was presented as a reward. And to me that made no sense at all, you know, we had been focused on saying we're gonna raise him with, you know, the knowledge that this was a really challenging condition, but that it wouldn't stop him from doing anything. And you know, I know that we've gone back and forth about that. But I'm trying to put you in my mindset of where I was at the time because Sure, we still say you can do anything. But now we know it'll slow you down, it'll stop you. This is a good thing having this pass if you need it. But at the time, we were not looking at it that way. And we thought Why do we want to teach him that he can cut the line just because he has type 1 diabetes. And now looking back that isn't at all what that house is about. It's not about cutting the line as a reward for you know, having to use an insulin pump. It's about as Robin said, If you know your child goes high in the heat goes low in the heat, God forbid, has seizures has real problems, things like that, you know, if you know that there are going to be circumstances where this will really help you then please please, please go get it. I think sometimes it's it's a more of a hassle in some ways, you have to actually go and get it and do all this stuff. So it's not an easy thing where you just swing mine skip the line. Also, if you're doing this as a reward, and that's your personal philosophy, right? Like a diabetes stinks. This is a good thing I can get out of it. I'm not sure that I can judge you either. I mean, I'm not sure that I don't have the same mindset that I used to, you know, we all do this differently. And whatever it takes to get you through the day, you know, the only thing is obviously, we never want anybody to abuse the disability pass. That's one of the reasons why they changed it, it actually used to be a lot easier. I want to say it was maybe 10 years ago that Disney made a lot of changes to the disability pass because people were really abusing it, not people with type 1 diabetes people who didn't need it at all. So just keep that in mind. Okay, so how do I get no lines? How do I do this? Well, my secret weapon is a website called touringplans.com. This is an amazing resource. It's the unofficial guide to Disney World, they used to have a book I mean, the first time we went, I used a book, right? Remember that you'd like read the book and mark the pages. But now it's a website and you can make a plan, you can make a physical plan with them like, these are all the rides I want to do, they will pop it into their little computer, and it will spit out here's where to start. Here's where to go. Here's what to get a fast pass for all this amazing stuff. And the other thing I do with my kids is I say, give me one thing we're going to do today, what's your one choice for today? You know, what's your one thing you want to do in this park, and then I build things around that so that we're not going to do everything we want to do is you know, that's impossible. But we know we're going to hit the one thing they really wanted to. And I plan really far out in advance. I have a friend who was going to Disney in I want to say September, October. And God she's given me hives because she's gonna wing it. And I'm looking at the calendar going, is it 190 days? Do you have your advanced dining reservations? When can you are you staying on property? So does that mean you can get your fast passes earlier? You know, you need to schedule your rides, pick your top three. And she would look at me like I had three heads if I suggested that. And you know, a lot of people just wing it and have a great time that I need to know, you know, if we're going to go on flight of passage, then I'm getting up at five or six in the morning, the day that my fast past opens, you know, 30 or 60 days before we're there. So I can book that right. So I'm not waiting in line for three hours when the day comes. Now I'm sure a lot has changed at Disney because of COVID. So definitely talk to Robin or check out touringplans I think it's something like six or $7 to get onto touringplans and get their information. And if you're spending 1000s of dollars, another six or seven bucks is not going to make a big difference in your budget, but it will make your money go so much further. They don't pay me. I'm not a affiliate of them. But interesting fact, Len testa who runs that whole thing he's been on the show before he's been on this show because he had been working in the type two diabetes sphere. With a medication algorithm to help people figure out I'm not sure this ever made it to market, but it's called glucose path. And it was all about looking at the varieties of medication people are taking, looking at their health insurance and things like that and trying to figure out what made sense for them to take in terms of what was covered. I don't remember all the fine details about it. But he is just an information guy who loves Disney. So that's how it all came together. It's a whole bunch of algorithms. And if he's applying it to other things now, including diabetes, I thought that was really interesting.
Robyn Adams45:29
Okay, we're
Stacey Simms 45:30
not done with Disney. Next week, I will be releasing an episode Fingers crossed. This goes well, because I've been scheduled to talk to him a couple of times, and it hasn't worked out, but I think we're good. The gentlemen Don Moo Chow, who ran from Disneyland to Disney World. He will be on the show next week. And I'm going to ask him a lot of questions, including Why Why did he do this? You ran he ran by foot from California to Florida. He lives with type 1 diabetes. Obviously, this is a big awareness campaign. But Holy cow. Alright, thank you so much for joining me. Thank you to my editor john pupkin is from audio editing solutions. I will see you back here next week for more Disney and until then be kind to yourself.
Benny 46:15
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.
We can't wait to travel again! Looking back on this episode really makes you want to hit the road. Jeremy Larsen is an American currently living in Japan but he's traveled the world.
Jeremy started the 70-130 project (the “perfect” blood sugar range) to show that type 1 diabetes shouldn’t hold anyone back from travel. In 2017 he came back to the states to do a national parks trip and now he blogs and posts videos over at T1D Wanderer.
This interview with Jeremy took place in October 2015.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
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Episode Transcription
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of did you know? stuff.
Announcer 0:13
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:19
Welcome to a classic episode of Diabetes Connections. I'll be so glad to have you along, we aim to educate and inspire about diabetes with a focus on people who use insulin. These classic episodes are a chance to revisit episodes that aired in the first and second year of the podcast, when frankly, we didn't have quite as many listeners. And it's always fun to go back and check in with these folks.
I spoke to Jeremy Larsen, back in 2015, he has traveled the world and he is currently living in Japan as he was when I first spoke to him. He started a project that he called 7130, the perfect quote unquote, blood sugar range to show that type 1 diabetes shouldn't hold anybody back from travel. Jeremy was diagnosed with type one when he was nine years old. And he says he got the travel bug from his parents and he's from America. He's an American citizen living abroad. And he says he spent a lot of his childhood seeing the US from the back of the family car. He has been all over the world. And you can see from his many, many videos, where he usually shows his blood sugar talks about his management, he's far from a perfect guy. That's not the point. He says, as you'll hear, it's more just about getting out there and living well. With type one little bit more on Jeremy is doing these days. I'll catch up in just a moment.
But first, this episode of Diabetes Connections is brought to you by insight the breakthrough, a new history of science podcast created by Simon Simon is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. The latest episode features the question does snake oil actually contain snakes, it's a look into how this phrase snake oil came to be. And it was kind of surprising. It's a little gross. But it's also very interesting. I got a sneak peek of this show at the beginning of the year. I love it. I've subscribed to it. I listened to every episode. They're all terrific circuitry inside the breakthrough wherever you found this podcast. And if you're listening through the website or on social media, there is a link to inside the breakthrough at Diabetes connections.com. And this podcast, as you know is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
When I reached out to Jeremy Larsen back in 2015, he was because I was just really intrigued by his Twitter feed. He was traveling all over the place. And he was always showing his blood sugar. And he had interesting stories about everything that you would we would expect, right finding insulin language barriers. We talked about that a little bit, you know, talking about what sang type 1 diabetes in different languages. He was just as fascinating to talk to him as I had hoped. And we actually connected again a couple of years later, he did a huge road trip across the USA in 2017. Going to different national parks. I think he talks about that in this interview that he was planning that and when I caught up to him recently, he said hey, I'm actually still in Osaka, Japan still teaching although we're watching the Coronavirus numbers with concerning the canceled big Amtrak travel plans last year he has been biking to and from work every single day. And he has a big YouTube channel. So I will link to that now as well. So you can check out what he's been up to.
One more quick thing I need to let you know, my intro to this interview. Initially, the beginning of my talking had a lot of music under it. I did things a little differently back in 2015. So it'll be really weird. If I play that now. It'll sound odd. So I will just set it up to tell you that at this point. Jeremy is talking to me from Japan. I am in North Carolina. And I'm starting out by mentioning the time zones here. I thank him for joining me today. Or maybe it's tonight.
Jeremy Larsen 3:57
Tonight, my time early morning, your time.
Stacey Simms 4:00
Let's start. When you were diagnosed, you were a kid you were living in the United States. You grew up in the southeast. How old were you when you were diagnosed?
Jeremy Larsen 4:10
I was nine. And I was living in Augusta, Georgia. I don't remember a lot about it, except that my parents say I was laying around on the couch a lot and had no energy and all that kind of stuff. drinking a lot of water going to the bathroom a lot. I think it was the lack of energy that really, really concerned them. And as I recall it, and I was only nine I'm not sure how accurate This is. But I recalled that they took me to the hospital on December 24. I know it was December 19 just a few days before Christmas. And I don't remember exactly what happened. But remember somebody probably my dad saying that you might have diabetes. And I had heard that word. I knew it was something but I didn't really know what it was right. So I was in the hospital for several days, you know, and of course it was diabetes. And I remember them saying The doctors were real good, never saying they weren't sure I was going to get out for Christmas morning. But they were trying to do that. And I didn't really care. I just wanted to get better. And finally, they let me get out on December 24. So I actually went home and had some kind of Christmas morning the next morning. So that's kind of all I remember, I remember a few things from the hospital, but it was just basically pretty, probably the pretty standard story from back then.
Stacey Simms 5:28
Yeah, when you're nine years old, you kind of just want to get back to your, your friends. And if you play sports, and just doing what you want to do.
Jeremy Larsen 5:36
I remember some of my friends at school had given like, Christmas presents to each other, and somebody had given me a box and I had like a giant candy cane in it. And I was kind of looking forward to getting back to that. And my parents had thrown it out about that.
Stacey Simms 5:51
Do you remember kind of life changing quite a bit? Or did your parents treat this as Okay, we're just going to go on, as we did before with diabetes?
Jeremy Larsen 5:59
No, that's exactly how it was. They just, they were really great. They were obviously very concerned and everything, but um, they kind of presented a just Well, that's how it is kind of face to me. And that's just how it was. I don't really remember a difference. I don't remember what life was like before it. You know,
Stacey Simms 6:18
we're going to talk a lot about travel today. Did you have that bug as a kid? Did you travel with your parents a lot?
Jeremy Larsen 6:24
Yeah, that's where it started. I don't I wouldn't say I had the bug. But we lived. I grew up in Nashville. Actually, I just moved to Augusta when all this happened. But when I lived in Nashville, Tennessee, and when I got when I lived in Augusta, we would take these long car trips once or twice a year down to Sarasota, Florida. And you know, especially from Nashville, that's whatever it is 12 or 14 hours, we do it one straight shot. So it was me and my sister and my parents, and we would just spend me and my sister in the backseat playing games and looking at license plates and all that kind of fun stuff. And we just got used to sitting for long periods of time and watching the world go by and we drove all around. We drove around the Mississippi once and just long, long car trips. I think that's where it started.
Stacey Simms 7:10
It's funny, you mentioned the license plate game and things like that, because I travel a lot with my kids who drive with the car, but they've got their movies in their iPads and they don't. I hope they look out the window sometimes.
Jeremy Larsen 7:19
I don't think they do. I still play the license plate game when I'm driving around America.
Jeremy Larsen 7:25
But you don't know,
Jeremy Larsen 7:26
Wyoming.
Stacey Simms 7:28
But you don't live in America anymore. How did you get to Japan?
Jeremy Larsen 7:32
Well, I had only I was still living in America. And I'd only left. The United States once now was for a month in Scandinavia. And that was a lot of fun just backpacking around, you know,
Stacey Simms 7:42
did you go by yourself?
Jeremy Larsen 7:43
Were you with friends? Yeah, by myself. Yeah. And that was just just kind of learning how to travel, how to be outside the US and how to find trains and how to find accommodation and stuff. And it was a lot of fun. But then I was back in the US. And I was working in Augusta, actually in Aiken, South Carolina. And I started I don't know what the thing what made me do this. But I started realizing I can I could not even not only travel overseas, I could live overseas somewhere. And I thought, well, how would I do that? So I started looking at websites and stuff. And I found that you could teach English. And you didn't really need any special qualifications depending on the country. There's a lot of different countries you could do it in. So I decided to go to Chile, because I was pretty good at Spanish in high school in college. And I still remembered most of it. So that I go to Chile, I'll be a teacher. And it turns out you had to have a teaching certificate or some kind of degree or something for GLA Chilean government's rules. So looked around. And then I kind of settled on either Japan or Korea because they had a good reputation for having a lot of jobs. And you didn't need special qualifications. And the salaries were pretty good even for introductions, introductory teachers. And then Korea kind of had a bad reputation. I don't want to smear Korea because I don't actually know they had a bad reputation for some of the schools didn't pay on time or wouldn't pay in Japan had no such reputation. Everybody thought Japan was pretty good. So. So I actually, I applied through a website to one of the big companies here in Japan and they flew I flew up to Toronto to have a an interview. And they hired me and a few months later, I came to Osaka for one year. My plan was one year, maybe two and that ended up being four years. And then I left Japan after four years went traveling a little bit and then I came back to Japan. I've been here another four years. That's where I am now.
Stacey Simms 9:40
What do you like about it? I mean, did you enjoy teaching or do you just like being in Japan?
Jeremy Larsen 9:44
My mother always told me that I should be a teacher and I always thought she was crazy because I never did anything like that. Like I was in I worked in newspapers I worked in like graphics and stuff like that. And just because that's what you do if you want to move here I started teaching English and it turns out I do I get it's, it's not really why I'm staying here. But it is fun. It's very, it's like, you know, most people have desk jobs where they just sit around and they're on a computer all day. But my job was just talking to people. And it's really a lot of fun for that. So the reason I stayed was kind of, it's just, to me, it's like traveling every day a little bit. Because as I don't read Japanese that well, I don't I'm not actually that good in Japanese, despite my time here. So whenever time every time I like walk down the street here, everything's kind of weird and new to me, still, it's still that way. And that's what I like about like a little sense of, I don't quite know what's going on. So I have to fight to you know, make my own way here. And I'm kind of used to it but still, it's it's an odd place to be. It's the people like me who thrive here are generally people who are probably more loners, or they probably, they just enjoy, they enjoy the challenge of trying to figure things out.
Stacey Simms 11:00
It must be just so fascinating, as you say, to feel like you're traveling every day. But we haven't really mentioned type 1 diabetes. Tell me a little bit about how you do it. Especially let's let's back way up. Tell me about your first trip that month of backpacking. It seems like this is second nature to you now, how did you prepare? And what do you do when you travel?
Jeremy Larsen 11:22
Um, it's kind of funny when I look back on my life, like because I was diagnosed at nine when I think of, you know, the rest of elementary school and junior high school high school, I don't really remember diabetes, like in high school, I don't remember if I took shots to school and took them or if I just took regular in the morning, I don't know what it was. Because I just had like a regular life. And I always, almost always tried to maintain diabetes, but I didn't really it wasn't like a huge, huge, huge thing. It was just something to deal with. You know, when I was in Scandinavia, all I really remember is that I had my glucose machine. And I was on human log and probably NPH. Yeah, human organ NPH at that time, and it was insulin pen with replaceable cartridges. That's what I was using. And I just, it was only a month. So I knew exactly how much I knew about how much I would need. And I made sure the doctor gave me probably two or three times that amount just to be careful, you know, right. And I kept it in a cooler pack, and just carried it around with me. I remember I carried a an empty Coke, coke bottle like an empty plastic bottle. And I would put my used strips and needles in it. Just carry them around month. And it got like all this bloody water and stuff. I remember crossing over from Sweden and Norway by train and some lady came by to check passports and stuff. And she saw that she just looked at it and didn't seem to care. Put it back in my bag. Sorry. But that's got to be the most suspicious thing she's seen all day. Exactly. As long as you have enough supplies, and all I have is insulin and blood sugar machine and strips. Just make sure I have enough I keep them in a couple different places like two different bags in case something happens to one. So it's not ever been in problem. Really.
Stacey Simms 13:09
You know, it's interesting to hear you speak about it. Because you're very low key about this. Obviously, you're taking care of yourself. You're doing what you need to do. But this I like that you don't remember what you did in high school to me that shows Hey, it's just life. We're getting through it. I mean, I don't remember all the stuff I did in high school. I don't have diabetes, it's just the way it seems to go for you. Is that attitude? You think something that is important as you live now in Japan?
Jeremy Larsen 13:31
Yeah, I think so. Again, it never really comes up here. Actually, the real I don't exactly know why. But I think one of the reasons and I don't know how cool of a story this is, but it is true. When I was in the hospital, and when I first got diagnosed, I remember you know, it's kind of a heavy atmosphere, like you've got diabetes a little bit. And I remember the doctors saying a couple times, well, you have diabetes, and that's not good. But the kid in the next room, he's got leukemia. Oh, geez. And another word I had heard that I didn't know what it was. And they explained that's much, much, much worse, you know? And I kind of think maybe because I eventually learned what leukemia was. And I kind of think maybe that's what gave me my outlook on diabetes. Like it could be much, much worse.
Stacey Simms 14:18
I think it's fascinating. You know, I'd love to talk to more people about their first impressions because I think it's very important. I don't doubt that that did affect you. When we were in the hospital with my son. There was a nurse who came by she wasn't our nurse. My son was not yet two years old when he was diagnosed, and we didn't know we were doing well. But what is this what's gonna happen? And she came in and she has type one, she was pregnant with her second child. And she said, I just wanted to come in and tell you everything's gonna be great. life's gonna be good. They told me I couldn't have kids. Here I am with my second. Don't baby Your son, get out of the hospital have a great life. You know, see you later. And it affected us to the point where we thought Oh, great. Look at that. I think if we had let ourselves kind of wallow in the world. mean nothing's going to be good ever again, it would have changed. But this great nurse came by and said, Dad, come on, it's gonna be okay. It really
Jeremy Larsen 15:06
a lot of people do follow it and they don't have anybody like that. And I think that sets them on a bad course this isn't a bad attitude. You know,
Stacey Simms 15:13
I think we were extremely lucky. So, Jeremy, now that you have traveled and you have traveled extensively, you started at really interesting project that I want to talk about. And that is how I saw you on on Twitter, this is your your Twitter handle and tell me about 7130. What is this all about?
Jeremy Larsen 15:36
7130 rows, really, because those are the numbers that the American Diabetes Association recommends for pre meal blood sugars,
Jeremy Larsen 15:47
right, that's the
Jeremy Larsen 15:48
best range, the best range for generally speaking, I think 70 is a little bit low for me personally, but that's what they say. So it's got a good ring to it. 7130. What happened is I knew another diabetic type one diabetic, and he didn't take care of his, I guess he took insulin a little bit, but he didn't. Like he got sick one night, like he felt really bad. And he called his father who is a physician. And he said, I feel really bad. And his father said, Well, can you check your blood sugar? And he said, No, I don't have any I don't own a machine. And I heard this story. And I mean, whatever that story is worked out. Alright. But I thought, and he's had a couple surgeries for like, diabetic retinopathy and stuff like that. Wow. I thought why do people do that? Why do people just not accept it like it life is so much better, if you take a few seconds, every, every few hours, whatever it is, check your blood sugar and try to get it right, you know, it's gonna be real high and low sometimes, but just try to try to learn more, you know, the the psychological barrier that some people have not being able to face, it is very unhelpful, and what 7130 is really to me, for one thing, it's way for me to brag about the traveling, I do, and I like that. And I like blogging and stuff, but um, it's a way to show people that you can go anywhere, diabetes doesn't have to hold you back. And if you watch your blood sugar, and really like, you know, accept diabetes, except that you have diabetes, and that's just how it is. And it's not that big a deal. It's not that hard. It doesn't always make sense. But it's a pretty simple process to take care of it. If you do that, you're more likely to do fun things, you're more likely to whatever your thing is, if it's traveling or if it's getting a certain kind of job or living in a certain place, or whatever it is you want to do sports or something like that. So it's really all about checking. I know a lot of people are, are knowing your blood sugar and maintaining, I know a lot of people are aching to find a cure, they just want to cure like I'm fighting to find a cure. And I like the work that people do, especially the jdrf. Like they all do really good work. But I think psychologically, I'm not so worried about a cure. If it comes, that's great. But there isn't one now so I have to deal with it now.
Stacey Simms 17:58
And this 7130 project is a video project a picture project to where you're basically taking pictures of yourself in your meter, whatever the number is, and sharing them what's what is the reaction been? I love the videos. I think they're they're really fun. And a lot of times, almost all the time you have a pretty good number, do you I shouldn't get ahead of myself here. But do you wait till you have a good number to stick it in the video?
Jeremy Larsen 18:23
It depends on which one it is there's different things. There's one I did called Osaka A to Z. The point of that one was I made a list of 26 places around Osaka This is while I was living here working so I couldn't be traveling. I was kind of stuck here. So I made a list of 26 places around Osaka from A to Z and I went to each one I took a picture of my blood sugar machine. And those I did do some cheating on if my blood sugar wasn't good. I would I would drink juice or take some insulin and wait a little bit or I just pull up a fake number. You would not? I would Yes. Because the point was the finished product. So I had like all these I think yes 26 places and I think they were all between 7130 that was the point right? After I did that I thought that what happened was the feedback I got from people people said they liked it and found it inspiring that I was getting out to these places and stuff. But people were saying how's your blood sugar always perfect like that. And I kind of realized was kind of annoying because it's not even true. So the next one or one of the reasons I did was when I was in Europe for four months, I just said well whatever it is, this is what it is. And I'm gonna go to the top of this hill in Budapest and take a video or picture and whatever it is when I get there that's the blood sugar but I'm still here and I'm trying to do my best with with my insulin and my food and exercise and everything and if it doesn't work, it doesn't work but I'm still here anyway.
Stacey Simms 19:46
I like those better because it's go right
Jeremy Larsen 19:49
just go right.
Jeremy Larsen 19:51
You can you can stay at home and have a blood sugar this 350 or you can be traveling through the Czech Republic now which is better.
Stacey Simms 19:58
What has surprised you With about traveling with diabetes and and living in Japan with diabetes, anything really surprised you?
Jeremy Larsen 20:05
While living here, the big difference between living here is how easy the healthcare system is. It's nothing like it is in America. And I remember we know when I was in America had insurance through my employer and all that, and the deductible and which doctor you can see and all that kind of stuff. None of that exists here. I pay monthly into the nationalized health surface health system, and I can go to any doctor, or they can write me a prescription, I can go to any pharmacy, everything's really like, the prices are all set. doctor visits are really cheap. And the insulin cost about the same as what it does in America. But it's just no worry. There's no health insurance worry.
Stacey Simms 20:43
It's fascinating, isn't it all the same supplies? I do have access to everything that you would have used in America.
Jeremy Larsen 20:49
Actually, somebody asked me today on Twitter, what kind of Insulet What kinds of insulin are popular here? And I didn't really know what to say cuz I only know what I use, which is human log and Lantus. Now, and those are actually manufactured for the Japanese market here, like my pins actually have are written in Japanese on the side. Oh, they're very, I mean, yeah, even if I go to a doctor, and then like a brand new doctor, and then they write a prescription and I go to the pharmacy next door, the pharmacy will probably have humalog and Lantus in the refrigerator there. And if not, they can get it within probably 1824 hours.
Stacey Simms 21:25
Have you ever been in a situation that you're traveling kind of led you to a difficult situation with diabetes, you have to forgotten a bag someplace?
Jeremy Larsen 21:37
Well, nothing like that nothing where I was just out of supplies and couldn't find any, because I'm so paranoid about it, that I always make sure something's gonna happen. I've like my longest trip so far was about 303 130, some days, but 11 months in Southeast Asia. And I took enough insulin with me for about maybe two or three months, so I had to buy it several times while I was on the road. And in those countries, like I was in, I ran out in Thailand. And I was in a small town in southern Thailand. And I thought, well, what am I going to do? And I went to the local like the prefecture or hospital, or whatever it was, and I talked to this doctor who spoke English for some reason. And she said, I said, I need a human log, just so you can't get human log here. You can get it. There's a private hospital over on the other edge of town, but it's whatever, like expensive was like $40, a pen or something like that for some reason. And I was really budget traveling, and I didn't have $40 for a pen. So she said, Well, you can buy this stuff called act rapid here. I said, What is it? She's Well, it's fast acting, it's probably good enough. And I said, Well, how much is it and she told me it was like dirt, dirt, dirt cheap. But it's a real kind of insulin. So I bought a bunch. And it was really cheap. And it was kind of a test. I said, if this works, okay, and if it doesn't work, I have to go home, back to Japan or something because I won't be able to continue this. I mean, if I can't find the insulin I need the trip is finished. And I have no problem with that. Because diabetes is priority number one. But it worked fine. And so I got lucky. So I had bought a bunch and I was good for another three or four months or something. And then I was in Cambodia. And I went to I was in the capital of Cambodia, Phnom Penh. And I needed some more insulin. And I knew in that region x rapid was most common. So I went to this pharmacy, I think it was like on August 31. Because they had pins, they had x rapid pins in the in the refrigerator, and to two boxes of five pins of 10 pins. So that's good for about three months or something. And I said, Great, I'll take them. And they said, Oh, and then I noticed the expiration date was that day, oh, these are expiring today. So I was kind of thinking he would go and go into the back and get some others, you know, right. And he me guy kind of looked at me. And he kind of lowered his voice and said, Would you take these for half price? And I said absolutely, I would. Again, it was just, I'll try it, you know, and those worked fine for the next three months. And just things like that. I've always, if I can't find what I need, I would cancel a trip. But that's only that's the closest it's come to happening. And that wasn't really a big problem. So I've been lucky or I just been careful.
Stacey Simms 24:26
I probably a little bit of both. I would think too. I mean, you know if you're packing that well, as you're traveling, and I think we also forget, diabetes is not an American experience. You can get flies around the world.
Jeremy Larsen 24:38
Right, right. Yeah, when I was crossing over from Cambodia and Vietnam, it was this strange little outpost of a border crossing and not many people used it and they were looking through my bags and stuff and they found a bunch of syringes and pens and stuff. And so what's all this and they didn't speak any English and I didn't speak any Vietnamese and it was kind of they were kind but they're they're friendly about it but there was obviously they weren't gonna let me through And finally I remembered I had a phrase book and I got it out and the word diabetes was in the phrase book. So I showed it to them showed him the Vietnamese version. And they all started like smiling going, Oh, okay. Okay. Okay. And they said, Well, you know, zipped up my bag and told me they told me to go ahead. Wow. So even even they were very, very suspicious. But as soon as they learned it was diabetes, they're like, fine, fine, fine. Go ahead.
Stacey Simms 25:22
That's great. Probably a better reaction to get from the TSA sometimes in this country.
Jeremy Larsen 25:27
But yes, hey, so
Stacey Simms 25:28
how I put you on the spot here. How do you say diabetes in Japanese?
Jeremy Larsen 25:33
diabetes is Tonio Bo, which means, I think it means urine sugar sickness. That's what they call it. Tonio Gill,
Stacey Simms 25:43
what's your advice for people who are worried about travel?
Jeremy Larsen 25:48
My advice is that almost all of the problems in the worry are psychological. And it has nothing to do with diabetes. I actually actually think to get a little philosophical about it for a second, I think diabetes is mostly a psychological condition. I mean, obviously, what it is, is an imbalance of sugar and glucose and insulin, yeah, take care of that, because you don't make your own insulin. But that's fairly simple. It doesn't always make sense. And like I checked my budget earlier today, and it was 360. I had no idea it was that I have no idea why. But it just happens. Like physically, it's easy to take care of, basically, you know, just balancing those two things, but all of the psychological worry, that's what takes a bigger toll. In some ways. Obviously, there are physical tools. But so when people are worried about doing anything, I understand the worry, because you're going to go to a strange place. You don't know what the food is, you don't know. Is there going to be like a refrigerator from insulin? Is there going to be what if I break my insulin pin? What How can I go to a clinic and buy a new one has all that work, but what I've found is that people will always help and there's no problem, there's not going to be any problems. People like health care as the same everywhere, no matter it might be good or bad quality, but the people behind it are the same everywhere. They want to help. And if they realize that you are if you can communicate somehow that you're diabetic, and you need this, you need that, they'll do something, something will work, you know. So I'd say just go, just don't worry about it. But you have to plan to make sure you have enough insulin and stuff if you don't feel like buying it overseas, but there's not much to really worry about. It's all in your head. That's kind of basically my advice. Diabetes is the same when you're in a little guesthouse in the middle of Laos, as it is when you're home, you still have to make sure that you had enough food and enough insulin and you have to check if you don't know and it doesn't really change when you're on the road.
Stacey Simms 27:39
What's next for you? You're in Japan right now. Are you planning any big trips are you going to stay there another four years,
Jeremy Larsen 27:46
not another four years.
Jeremy Larsen 27:49
Going back to Aiken
Jeremy Larsen 27:50
back to Aiken
Jeremy Larsen 27:53
would be an interesting change, I'd
Jeremy Larsen 27:54
love to visit Aiken. I don't know if I'm looking to move back to a
Stacey Simms 27:58
small town in South Carolina. I
Jeremy Larsen 28:00
should mention.
Jeremy Larsen 28:01
I just finished up a four month trip to Europe, which was a lot of fun kind of eastern and southern Central Europe. And then I was actually in the states for a couple months. And then I just came back here in April. So I'm kind of here. refilling my coffers. And teaching classes, you know, saving the next trip, which will probably I hope would start about a year from now. But I don't know Don't hold me to that. I would like to rent a car and just drive around the US for two or three months going to see the national parks.
Stacey Simms 28:33
Wouldn't that be great.
Jeremy Larsen 28:34
And I've seen some of them. And I've taken a few car trips across America with friends of mine, but I've missed a lot of like I saw the Grand Canyon, but I didn't see a lot of the great national parks Yosemite, I haven't seen Yellowstone, I haven't seen things like that. So I have a big list and have a big excel sheet with all of them. That would kind of be my next trip.
Stacey Simms 28:55
That sounds terrific. We did a small trip like that two years ago to the Grand Canyon and Bryce Canyon and Zion. And, um, we were really nervous about diabetes. And it worked out so well. And my takeaway from it has always been my son. We went on a mule ride on you know, we were we were all on the mules on in Bryce Canyon. And he was I want to say, seven or eight years old at the time. And I remember thinking, Okay, we're going to be in this mule for two to three hours. You know, what are we going to do? Go and logo and Hi, we weren't remote monitoring at the time. He wasn't even wearing a CGM. It worked out so well. We didn't worry about diabetes. We had a blast and the pictures from that trip. Were just incredible. And it was so much fun. So I love that idea of just realize that diabetes is the same whether you're in your house or you're on a mule in Bryce Canyon. It really is.
Jeremy Larsen 29:48
It's right.
Stacey Simms 29:49
Well, definitely keep in touch. This was really interesting. I'd love to talk to you again, especially if you wind up doing a trip to the States. That'd be great.
Jeremy Larsen 29:55
Yeah. Okay.
Stacey Simms 29:56
Gary, thank you so much for joining me.
Jeremy Larsen 29:58
Thank you very much. I enjoyed
Jeremy Larsen 30:05
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 30:11
Lots more information about Jeremy Larsen. You got to watch his YouTube channel. I didn't set up at Diabetes, Connections com. He also let me know that he's got a lot of videos from that park trip. He's in the process of uploading a lot of that stuff to YouTube. Apparently he's redone a lot of his social media and as many of us have since 2015. So that's getting uploaded. So please go ahead and check that out. And he said he has a few things up his sleeve for the next couple of months or years, you know, after Coronavirus passes in Japan, which if you go just as an aside, if you go to his website, and I watched a couple of the videos, it's been really interesting to see how Japan has handled Coronavirus.
You know, of course, they have had far fewer cases in the US they handled the virus itself differently in terms of better masking and that kind of thing. But they have been slower on the vaccines. And Jeremy talks about the Japanese culture and kind of why that is they're really just getting the vaccines rolling out now several months after the US. It's just so interesting to get that perspective. Right. I mean, travel is the greatest thing you just learned so much. You opened your mind. I can't wait to travel.
Alright, thank you so much for joining me a couple of really fun and interesting episodes coming up if I do say so myself. I'm not exactly sure which one I'm going to go with next week. Because as I'm speaking to you now, schedule is a bit up in the air but here's what's coming up. I have a roundtable on sleepaway camp. This is non diabetes sleepaway camp. So we're going to talk to two adults who went to this kind of Camp when they were kids to adults with type one and two parents. I'm one of the parents who have children with type one that they have sent to regular sleepaway camp and kind of how to do it and what you can expect that kind of thing. And we're also talking to the man who just set a record a brand new Feat. He ran from Disney to Disney. He ran from Disney Land in California to Disney World in Florida. I am still working out the logistics, but Don promised me months ago that we would talk so I'm hoping that will be the episode for next week. But that's really up to him and boy, if anybody deserves a rest and we can hop, it's him.
Alright, thank you, as always to my editor John Bukenas fom audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Benny 32:29
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
Lija Greenseid, her husband Andrew and their son & daughter are recently back to their Minnesota home after almost a year of whirlwind travel. The Greenseids always enjoyed travel and they wanted to show their children, Arija & Adam, more of the world. They picked up and spent 9 months traveling internationally. Since Arija has type 1 diabetes, this took a lot of planning, extra supplies and learning as they went. Lija shares their story.
Also this week, as we follow Bike Beyond all summer long, Stacey talks to Sid Sharma. Sid was diagnosed with type 1 two years ago, at age 27. He's already biked from London to Paris and is excited to travel through America with the team.
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This week, he’s traveled the world, despite type 1, and now Jeremy Larsen is back in the US, traveling to the US Parks and Monuments. Saying "You always find a way," he wants to inspire us to get out and have fun without fear as we travel with diabetes. Jeremy shares why he's back home in the US to travel the parks, after living and traveling abroad for many years. He also explains why he's made his trip a fund raiser for JDRF.
As of this episode air date, Jeremy will be about six weeks into his trip. We caught up with him near the beginning.
Stacey also talks about the new iPhone & Android apps available for Diabetes Connections. Now it's easier than ever to listen to the podcast and share it with friends and family touched by type 1 diabetes.
Robyn Adams has a son, a husband, and a father-in-law with type 1 diabetes. She's also a Disney Planner and has advice on how to navigate a trip to Disney World (or anywhere) with diabetes. You'll also hear from Rob Myers, organizer of "Running for Ruth." His mother died last year from complications of type 2 diabetes and now he's honoring her memory by raising money to send kids with all types to diabetes camp. Stacey also talks about Diabetes Podcast Week, a project she's organizing for the week of February 1, 2016.
American Jeremy Larsen has traveled the world and currently lives in Japan. He started the 70-130 project (the "perfect" blood sugar range) to show that type 1 diabetes shouldn't hold anyone back from travel. Our Community Connection features a family that loves to visit exotic locations and their advice for taking diabetes on the road.