#163 Go to Spain and or Apollonia
Kelly hits all the right notes....
Kelly is an opera singer who has type 1 diabetes. Find out more about Kelly's music here.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - google play/android - iheart radio - or their favorite podcast app.
“I will lean on my friends, family, and the DOC for support when I need it. I will focus on educating those around me about T1D, and supporting those who struggle. ”
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello and welcome to Episode 163 of the Juicebox Podcast. Today's episode is sponsored by Omni pod and Dexcom. There will be some wonderfully produced and rather entertaining ads for both later in the show. But for now you can go to dexcom.com Ford slash juicebox or my Omni pod.com forward slash juice box for more information. If you're looking for an insulin pump, or a continuous glucose monitor, just go to the links I just mentioned. There's even links in the Notes for this episode and at Juicebox podcast.com. Today's guest is Kelly Griffin Kelly has type one diabetes, and is a professional performer she sings the opera, which is really cool, because I don't know how anybody can do that maybe I should try to sing the ads in opera later could happen. Anyway, Kelly and I met a long time ago online because she was a performer who felt compelled to hide her type one. But then after she found the podcast and some community online, she started to feel more open about it. We're going to talk about that today plus a lot more. It's really an interesting and encompassing episode, Kelly was even nice enough to send over a piece of one of her performances for me to include in the episode. It sort of sounds difficult, but I bet anybody could do it. Watch. Nothing. Okay. I'm not a soprano, maybe about nothing you hear on that night can't sing nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being bold with insulin. I promise I will never do that again.
Unknown Speaker 1:35
I Scott Kelly, how
Unknown Speaker 1:36
are you?
Unknown Speaker 1:37
I'm good. How are you? Excellent. Thank you.
Scott Benner 1:50
This is gonna be great. I like having the chance to talk to a woman named Kelly who I don't have 25 years of animosity built up with
Unknown Speaker 1:59
not yet.
Unknown Speaker 2:02
You think you would like to do it?
Kelly Griffin 2:07
No, this is very exciting. For me. I've been a fan of the podcast for a long time, I've been listening and gleaning information. And it's really, really helpful. So I'm glad to be here.
Scott Benner 2:21
It's exciting for me too, because you're one of the few people who ever said to me that you were sort of, I've never heard somebody say hey, I kind of hide that I have diabetes. Like Yeah, and that was like, I think our first interaction together, which maybe goes back years now. Right? Right. Right. So that would be to me, you're already recording. So I'll probably just leave all this and
Kelly Griffin 2:47
Yeah, fine. I listen enough. I know, I know what goes on.
Scott Benner 2:53
So just introduce yourself any way you want. And we'll just keep going.
Kelly Griffin 2:56
Or I'm Kelly Griffin. I live in New York City, and I've been dealing with Type One Diabetes for about 15 years. Now.
Scott Benner 3:10
When you say dealing with you don't mean? You don't mean you work in a casino. And you know,
Kelly Griffin 3:15
again, not yet. But I have been living with Type One Diabetes for 15 years.
Scott Benner 3:22
I kind of liked it when you said dealing with if I'm being honest.
Unknown Speaker 3:25
It's pretty accurate.
Unknown Speaker 3:27
I've been putting up with this for
Kelly Griffin 3:30
you know, it's a day today 24 seven thing that that ride along with me, you know, whatever I do so yeah, absolutely.
Scott Benner 3:40
So you live right in the in the city you're in?
Kelly Griffin 3:43
Yep, I'm in New York City, Upper West Side, Manhattan.
Scott Benner 3:48
We never really talked about this. But for people who aren't from the East Coast or have never really been in Manhattan. It is a different lifestyle. You know, like very different, right? So when people talk about like, Oh, I have to carry a meter with me or you know, you're you're just running from building to building you're like ants running from hills, and except in the middle buses are trying to run you over.
Kelly Griffin 4:11
Right? And you are you know, when I leave for my day, depending on you know what my day looks like I may be leaving with a big bag or maybe a backpack everyone does. So, you know, when I I hear people talking about, you know, how am I going to carry my diabetes supplies. When I leave the house, I have so much other stuff that I'm carrying with me that my diabetes supplies are really a small thing compared to everything else because I probably won't be home in between activities and you know, you're running all over the place. So it's just a normal part of every day. And it's funny and I think some of the women will appreciate this. I was trying to get a little cross body bag, which is what they call it a little bag, you know that I should just kind of run around with and put my driver's license, a credit card, maybe some lipstick, and that's about it. But I'm thinking, you know, no, I've got to make sure I've got my pump, got to have my meter, I've got to have everything available. So it's like, there's always a little bit extra work. And it's always there. And I
Scott Benner 5:23
think to just living in the city is like yesterday is a great example. I had to run Arden to the salon right up the street from my house. And then she and Kelly were going to go get their nails done. They're going away this weekend. And so I took her to the to the first stop, I guess I don't know she was getting her eyebrows waxed. I guess that's not bad to say. Right. And I and and then we came home for a second and then she went to the next thing but in the city you don't pitstop back at your house. You had Nomad with that backpack, like every, everything you need for the day needs to be in there. Right? Yeah, it's just, it's a different sort of interesting lifestyle that I don't think exists many other places. Right? How old were you when you were diagnosed?
Kelly Griffin 6:08
I was 25 when I was diagnosed.
Scott Benner 6:11
Okay. And you were already an adult, and you were working in your profession now?
Kelly Griffin 6:16
Yeah, I was. I was actually in graduate school when I was diagnosed, so I was an adult away from home on my own. So I've always been the only one in charge of my diabetes. Yeah.
Scott Benner 6:30
How long are you in grad school? And until we diabetes?
Unknown Speaker 6:36
Oh,
Kelly Griffin 6:37
boy, let's see. I think it was about my last year. So I would say, you know, until about the age of, of 25. And then I, you know, started working and moving about so I'm, I'm involved in classical music. So I have always been working whatever job to kind of allow me to continue doing that. And I also own my own business. And so yeah, I just started living in the real world, you know, with my diabetes after graduate school.
Scott Benner 7:18
And how did that go?
Unknown Speaker 7:20
You know,
Kelly Griffin 7:22
I'm always so envious. The reason I came to you was because I saw the video of you and Arden on YouTube, when she was just a little girl, and you were administering shots. And then also, I think, trying to get her to have a little bit of juice or something because she was very low. And I just look at that. And I think, wow, I wish that for Christmas, one year, somebody could just come and take over my pump and my decks calm. And just let me go about my day. You know, I wish I had that kind of care. It was amazing to see that. But yeah, I was diagnosed as an adult. And I remember when I was diagnosed, they first thought it was type two, because I must have been going through some kind of honeymoon period. And also, because of my age, the doctor at the time, did not consider type one and and I remember someone suggesting to me based on my symptoms that maybe it could be type one. And so of course I started reading online. And I think when on some kind of a high protein, low carb diet, just combat whatever possibly could be going on in my in my diet. So when I took my, you know, fasting blood sugar for the lab studies, it wasn't an incredibly high, but it was high enough that it was definitely within a diabetic range. So the doctors put me on oral medications to start with and I had really good results again, I was still eating pretty low carb at that time just out of fear trying to deal with what what might be going on. And then I started trying to go back to my normal lifestyle and the oral meds just really weren't working anymore. And it was a diabetes educator who said to me, I think you might have type one. So when I was initially diagnosed again I was I just happened to be visiting my family. I came home from college, visiting my family, they took me to the doctor, he said, we think that you have diabetes again, thinking it was type two, we had planned a trip to Spain, and we were leaving the next day. So he said, go to Spain. Have fun, and let's deal with this. When you Get back
Unknown Speaker 10:03
in Spain cry.
Unknown Speaker 10:06
This is so much fun. I
Unknown Speaker 10:09
really love this place. Oh, look, it's
Scott Benner 10:15
so delightful advice. Go to Spain. Forget I just told you you have a lifelong illness, take some pictures and come home and then we'll just work this all out later.
Unknown Speaker 10:27
Oh, that's good. So here's a wonderful doctor, but it was just you know, at that time
Kelly Griffin 10:32
at the food, you know, I was afraid to eat. I didn't know what to eat. You know, I'm just, it was it was an interesting vacation. So anyway, like I said, as the month progressed, the oral meds just stopped working that Metformin you were taking, you know, Scott, I think that that was part of it. But I remember something, something else, kind of a 24 hour medication, whatever it was, I don't want to guess I don't say it wrong. But I think Metformin came along a little bit later. Okay.
Unknown Speaker 11:08
So,
Scott Benner 11:09
I'm sorry. So this was based mostly on just the fact of how old you are like they didn't want to believe at that point that you could have type one because you're in your mid 20s.
Kelly Griffin 11:18
I don't even think it occurred to anyone. It's interesting. So yeah, when I was told I had diabetes, I thought it was type two. So I was trying to manage it through the oral medication, diet, exercise, all of those things. And like I said, What a diabetes educator said to me, I think that when you go back in New York, you ought to have them look into type one. So I found an endocrinologist when I came to New York, and he ran some lab studies and said, Yeah, you know, it's, it's type one, and I was immediately put on insulin
Scott Benner 11:55
timeframe between when you first when someone first had diabetes to you when they said type one, how long were you doing the oral meds and everything?
Unknown Speaker 12:03
I would say? Maybe four, five months,
Scott Benner 12:09
and you were probably honeymooning and you were eating low protein. So it's Yeah, it's holding it together a little bit. Yeah, exactly. Exactly. But,
Kelly Griffin 12:15
you know, the low carb thing for me only lasts a short while and it's like, okay, you know, at some point, I need to begin to get back to my normal life. And so when I started incorporating, you know, just regular foods into my diet, it just became more difficult to manage with those oral medications. So yeah, well, you
Scott Benner 12:38
know, prior to insulin, if you if you got type one, they would just did pretty much go on a starvation diet and run around a lot trying to stay alive.
Kelly Griffin 12:46
That's right. Yeah. And, you know, that was another thing that, I think because of what I looked like, at that time, you know, I think that at that time, they were associating type two with, you know, overweight, sedentary, probably a little older. And that's what the doctors were saying to me. And so they were even baffled that I would have type two as they thought I had, because with the diagnosis of type one, Scott, I probably lost about 20 pounds. Yeah.
Scott Benner 13:17
So even though even the overly simplistic visual cues for type two didn't apply to you,
Kelly Griffin 13:24
right? Because, you know, he, he didn't really know me. He was not my family doctor, I was visiting my family and seeing a doctor that really didn't know me. And you know, when you're young you think you're invincible. I didn't really establish care with with a primary doctor. So no one really would have known Hey, she lost 20 to 30 pounds. Maybe we ought to look into type one,
Scott Benner 13:48
especially in your I mean, in your 20s that's a time when you just I mean Invincibles even too It's too soft of a word.
Kelly Griffin 13:57
I thought I'd do it school. I got a little stress. You know, I'm not eating as much though. Yeah, sure. I'm gonna lose weight.
Scott Benner 14:03
If I lost 20 pounds right now. I'd be like, finally, the universe is looking out for me. Do you stop?
Kelly Griffin 14:09
Yeah. It's so funny because at the time that I was so tired, so lethargic, I was drinking soda all day because I don't drink coffee. But I will drink a soda to give myself caffeine. Now of course I was drinking regular soda at that time, but why not? I'm so thin. It doesn't really matter.
Scott Benner 14:35
You know, when I was growing up, my parents had friends and the husband was like a rail skinny real tall arm real thin. And his wife was kind of around and chubby. And she's alive in her 70s he died 25 years ago from a heart attack and but he was always that guy like real skinny could eat a whole pizza was still real skinny. Yeah, and and then always thought of his health as his weight which is interesting because there wasn't that much of a correlation? And it ended up being the wrong way to think about it. But if we do that, I mean, I would do that too.
Kelly Griffin 15:07
Yeah, I was so sick. I've never been sicker. But I thought, well, I'm dropping all this weight. This is fantastic.
Unknown Speaker 15:17
This time
Unknown Speaker 15:21
I find
Scott Benner 15:22
another college, I'm going to jump into the real world thinking about going up to Manhattan is a real This is beautiful. And so know. Exactly right. The plan was, yeah, sure. Right, that really went through. What was the first way they gave you to manage? But did you get like syringes? Or what was the deal at that point? Guess what, we have a dexcom g six continuous glucose monitor just came the other day. Dexcom started their shipping with 1000 units. They went to people like you know me with the podcast, and people like you, who just saw them online saying who wants to be first to give it a try. Now, if you didn't see that, don't worry, the rest of them are coming really, really soon. If you're a current g five or g4 user, and you'd like to go to G six, Contact Dexcom today, give him a call and be like, Hey, yo, what's up? Next time I am ready for a reorder, I want to move to G six. And they're going to help you do that. When you call tell them hey, I heard on the Juicebox Podcast that the Dexcom g six is like gonna shift like any day now. Is that true? How do I get involved. But if you're not a Dexcom customer currently, but you're listening to us on the podcast talking about using this continuous glucose monitor that we love so much, and you want to get started, go to dexcom.com forward slash juice box, and Dexcom will help you get going right away. Now you may be thinking, Scott, why do I need a dexcom continuous glucose monitor? Let me get in real close. Let's Get Real intimate. Let me explain it to you. Real, real nice. Because you do It's fantastic. It's amazing. You want to be able to see your blood sugar, where it's going how fast it's moving on to be able to make treatment decisions. Yeah, you do. You want to be able to say hey, my blood sugar starting to fall, I should maybe have a small snack, hey, my blood sugar starting to go up. Maybe I could bump it with a little bit of insulin here and stop a high blood sugar later. Of course, you want to see that. You want to see the speed and direction that your blood sugar is moving in real time because it's an amazing way to manage your type one diabetes. Oh my gosh, I almost forgot to tell you last week I said I was gonna tell you about the share. And then I didn't normally do it again. Party. I'll extend the music Hold on. All right, next one. This is free bonus add time, the share function on Dexcom means that you are a loved one can wear the dexcom continuous glucose monitor, while people you choose out in the world can follow your blood sugar on their Android or iPhone device that come on. Wouldn't you like to know what your kids blood sugar is right now wherever they are. Or maybe you're an adult living alone, who just wishes that somebody could have their back in a moment of emergency, you would have the freedom to set up a follower anywhere in the world. And you could set their alarms wherever you wanted to. Maybe you just want them to know when your blood sugar goes below 55 because you're hoping they could, I don't know give you a call three a text message. Hey, all right. There are limitless ways to use the share function on the Dexcom you will find the way that fits your life best, but trust me, it applies in some way to everybody. Go to dexcom.com Ford slash juice box. They'll start today. And I hope you're as excited as I am about the newest version of Dexcom, the G six which like I said, we've just started using, I'm going to have a pretty extensive review for you as soon as I can. But first I got to absorb it, use it. Make sure I understand what I'm telling you. I'm not just gonna jump on here, but like it's great by it because I don't know. I don't know yet. But I'm hopeful. And what I see so far is really, really great. All right, let's get back to Kelly. What was the first way they gave you to manage? What did you get like syringes or what was the deal at that point?
Kelly Griffin 19:09
Yeah, I had the I think the first insulin that I was on was the Oh gosh. What's the one with the peaks and the valleys?
Scott Benner 19:20
humalog novolog
Kelly Griffin 19:22
24 hour insulin. Oh,
Unknown Speaker 19:24
geez.
Unknown Speaker 19:25
Oh, okay. You were doing
Unknown Speaker 19:28
regular and mph? Yes, yes. Yes. Yes.
Kelly Griffin 19:33
Yes. So I had some peaks I remember throughout the day, but that was very short lived. And then I went on something like a 24 hour I think like a Lantus or levemir. And then I would just do regular through the pens.
Scott Benner 19:51
It's interesting how it's changed so quickly.
Unknown Speaker 19:53
Oh, yeah.
Scott Benner 19:54
No, I remember when my friend was diagnosed when we were in our late teens, he was just like, I just have to take the shot in the morning and then at night before thinner. And I was like, That's it. That's it. That's it go. Okay. And he lost weight too. So he was like, This is great.
Kelly Griffin 20:08
Yeah, I'd be curious to know that a one see results.
Scott Benner 20:11
Yeah, it wasn't good. But that's what he was told. Yeah, you know, and in your late teens, a doctor said, do this, it's already stressful. You're not looking to dig deeper. I think. I think I still see that now with people, right? That you do Really? You want your life to be simple? Everyone does. It sounds it's obvious, right? And so if someone says this, we'll do it. But then there's a pause. And in your mind, you think, I don't think that's right. But they did say it was, so I'm just gonna go with it. You know, like, there's that go with it. So that I don't have to think about it anymore. Feeling.
Kelly Griffin 20:45
Right? Yeah. And it's so important, you know, for platforms like this, because although you're saying, you know, I'm not giving advice or anything, you know, but has to take control, I think anyone will tell you, you have to be your advocate, you know, you have to read up, you've got to study, you've got to know what's happening with diabetes, technology, all of these things, because you may go to a doctor who promotes one pump over the other or one CGM over the other or one way of managing things. But if you go in with the information and say, I choose to do it this way, and no one can argue with the results when they see your numbers, then, you know, I think that's the most beneficial thing that you can do. But you really have to take it into your own hands. Like, you're always saying, You can't wait three months for your next doctor's appointment to adjust your pump settings, and
Scott Benner 21:44
just talk to somebody on the phone yesterday. And I said, Look, you just have to bump them around yourself. Yeah,
Unknown Speaker 21:48
you can't.
Scott Benner 21:49
I mean, can you imagine it could take six to nine months to get it? Right? Right. In that time, your blood sugar is high the entire time or in this situation? It was her daughter. But I think that I think that you, you know, to go back to that idea of it's it isn't fair, right to get diabetes isn't it's not fair. It shouldn't be, it's not what you were expecting, it's how you're planning. It's not how you were living prior to then. But at this point, now you have this part time job, that's really more of a full time job. And, you know, it's it's a part time job that you do from home. So you're really at it 24 hours a day. And and it's and you have to you can't just say, well, this isn't what I wanted for my life. So I'm going to ignore it. That's, yeah, that's what you do with a weed that grows in your backyard, but you don't have a way to cut it down. You just don't look at it, you're like, that thing will die when it gets cold. And you look away, you know, but this doesn't this doesn't go away ever. So to not take and to not take an active role in it is it bends my mind a little bit. But But I think of it that way. To go back to what you said earlier, because I'm taking care of a person that I love. Yeah, it's not me. There are plenty of things with my health that I ignore all the time. You know, like, I'm walking down the steps for the last week and my ankle clicks in a way that I'm pretty sure it's not okay. And so far, the way I've handled it was to think that'll stop.
Unknown Speaker 23:06
Yeah.
Kelly Griffin 23:08
put things in perspective, though, right? When other things come up. And people say, I know this is going to be an inconvenience for you. And I'm thinking you have no idea what I deal with on a daily basis. This is nothing.
Scott Benner 23:21
I do like that when I see people freaking out around me. And I'm like, what's wrong? She's the photographer we had for my son's senior portraits backed out of us. I was like, oh, and this is throwing you into a tizzy as I call another one.
Kelly Griffin 23:36
For a lot of things that and I don't think anyone really knows it unless you are living with it or helping someone else to, to live with it
Scott Benner 23:46
and no way to know. Right? Absolutely. Okay. So here we are. We're in the world. And we are working and you see business, you're involved in classical music, you have a lot of things going on. But you but the first time you and I really started speaking, if I'm remembering correctly, and because I do literally no research for the podcast. I don't know for sure. But if I'm remembering correctly, you were as an adult, in your workplace not sharing with people that you had diabetes, is that
Kelly Griffin 24:14
right? That's right. Yeah. When I would perform. Right, right around the time of my diagnosis. I shared it with some close people who were in business and also in, in classical music, you know, it's like, how do I handle this? Because even though I feel I have good control over it, somebody maybe should know, because God forbid something happened. I don't want to be isolated in this and then I also my mother hates this that I that I won't wear a bracelet or or something. I have Something in case I'm ever in a situation that I feel it's important to put it on. But I've got I just don't ever want to be visibly. Ill I hate to say that, but that's, you know, I just want to go about my life. I don't want people saying, Oh, you know, what's that? Or what's wrong? Are you okay? And that was always a struggle for me. So it was recommended to me, especially in music, that I just not talk about it. So I thought, okay, if I'm getting this advice from people that that I know, have my best interests in mind. It's probably correct, I should probably just keep it to myself. I wasn't in any way ashamed of it. You know, it's just, I didn't want to be treated special in any way. You know, I didn't want anyone to have to say, let's take a snack break for Kelly. No, I
Scott Benner 25:58
think I completely understand. I mean, it's just, it's no different than anything else. You didn't want to be singled out or treated any differently than anybody else. You're not looking for the focus to be on you all the time. Or for you to be a an easy excusive if someone else needs it, right, you know, cuz you, you do run into those situations all the time. So the other day, Arden comes home. And she says, I don't think my science teacher understands the diabetes all that well. And I was like, what's wrong? And she said, uh, so Arden needed to leave the room, or no, I, you know what, here's the exact scenario, her blood sugar was drifting low. But it wasn't falling. And she was gonna get on the bus soon and come home. And she always has a snack when she gets home. So I didn't want to over treat this drift. And so I said to her, Hey, are you in a room that you have like supplies? And she always does. She's like, yeah, I said, have like a couple of like, she's some candy aside, I think she had like, Mike and ikes, or gummy bears or something like that. I said, have a few of them. And so she gets up because she's allowed to move around the room for that stuff, walks over to the cabinet. Looks in the cabinet. The teacher must have moved the stuff a little bit. And so she asked the teacher Hey, where's my bag with my candy and my juice? The woman says, Oh, it's right here. Arden grabs like a few pieces of candy. She throws it in her mouth down. But now the teacher stops. Are you okay? And our arms like, yep, I'm good. Just gonna, I just needed a couple pieces of that candy. I'm gonna go back to my desk now. Right now she was fixated on her. So now 10 minutes later, she comes up to her and she's like, are you sure you're okay? And when it's like, I'm really I'm fine. But thank you. And then it goes a little further than the class ends. And she comes up to her and she goes, I knew something was wrong, because you're pale. And I said, Arden goes, I don't look pale. I don't. And I think, you know, it seems like but I didn't know what to say. And I said, Well, thank you. I appreciate you being concerned. And she left her alone. Then she comes home and tells me I said, Arden Listen, you've never gotten pale once in relationship to your diabetes, this woman's now just she's talking herself into seeing something.
Unknown Speaker 28:00
Yeah, of course, it's out
Scott Benner 28:02
of a real concern. Like she's not a bad person, you know, but look at all this that's going on around Arvind that she doesn't want. And that's the stuff I'm assuming you were trying to avoid.
Kelly Griffin 28:13
Exactly, especially in a performance situation. I'm, there's already so much else that I have to worry about. I don't want anyone worrying about me, you know? And in a way because no one ever has worried about me, you know, my parents are very aware of what's going on, but they've never been responsible for taking care of my diabetes. So even when I'm visiting them, if, if something happens if I have a low blood sugar, the dexcom starts beeping or whatever, you know, no one's running over. Oh my gosh, oh my gosh, are you okay? Like, you know, my dad's a physician actually. And so you know, he'll just kind of look at me and he'll say you need something you need to handle something is something must be happening right now. He doesn't know the difference between the beeps you know, to is this for is that he doesn't know. Obviously
Scott Benner 29:13
Kelly I check the remote and the batteries are good in it. So I think I think you're beeping and do something about it. Please wait, isn't that that must be that must be incredibly difficult for them. Like, you know what I mean, like to have you have left the nest in a way and then for something so impactful to happen to that they couldn't be involved in. It must it must break their heart on some level like Do you know what I mean? Like not being able to Yeah, for sure. It's not really spoken about but I can imagine it from my personal Yeah, it's interesting.
Kelly Griffin 29:44
It really we talk about it, because I talk about it. You know, I especially when I started listening to the podcasts and you know, I went to friends for life. I was like, you know, I am going to meet another type one diabetic person or person with it. DVDs or whatever we want to be called now, I am going to meet one, I will find one. I know there's another one out there. Because, you know, for many, many years, I was the only one I knew that had type one. So that was quite, that made quite an impression on me to go down to Florida and meet all of these people, especially, you know, the adults who were living with and have been living with for much longer than I have, you know, type one, and it's just, it's really, really amazing. But I remember when I initially got the diagnosis now, this was when they thought I was tight to my mother was in the room with me. And I just being a kind of a dramatic person anyway, just burst into tears. And, you know, the poor doctors kind of got his hand on my shoulder, you know, like it. It's okay, it's okay. And then, my mom, I've never seen her look more stoic. But in a way I could also see because I know her. She was fighting back tears, but I think she was trying so hard to be strong for me to say, it's fine. We're just going to find a way to deal with this and we're going to move forward. But I've never seen her on the edge of crying like that.
Scott Benner 31:24
Yeah, it's it's a it's not easy to describe that feeling then something happens to your kids that you can't help is Yeah, it's on its way past helpless it It feels like soul crushing. It feels like, you know, it's I'm way more than just somebody's parent. But at the core if you made me cut things away from my life, and only make me one thing I would choose to be our Nicole's father. Yeah, it's just it's a tough, it's a tough situation to be put into.
Alright, on the pod, listen, you're just getting a regular length fad today, not like the super ad Dexcom got because they came out with something really cool and new. Get your dash out, I'm gonna give you a nice long ad as well. But for today, you don't need long you just need true. And you know what's true tubeless insulin pumping rocks, it is fantastic to be able to get your insulin when you want where you want without having to disconnect while you're swimming, or showering. Or, you know, maybe being friendly with a friend. You don't have to disconnect for anything, you can keep your blood sugar right where you want it all the time constantly. Without any nasty tubes running around in your clothing, or hanging out of your sleeve. You don't have to take the pump and jam it in your bra or on your belt. It is not 1975 I don't want something hanging from my belt. This isn't chips. That ain't my radio. I don't know what that means. But I do know that the Omni pod is, without a doubt the greatest insulin pump that I've ever seen. You go to Miami pod.com forward slash juice box to get a free no obligation demo. Now think about that. A no cost ain't no risk. You just give them a little bit of information about yourself. They'll send you out a demo pod. You can hold it, feel it, touch it, see what it's like and then you can apply it to your body and wear it and get the full experience before you decide. You know what that Scott God was right on that Juicebox Podcast? I should get the Omni pod. My Omni pod.com forward slash juicebox are the links in your show notes. Where the links at Juicebox Podcast comm start today. You will be very happy to eat it.
friends for life you went to friends for life to find other people who have type one diabetes. Yeah, he talked a little we never really talked about that here. I guess. I always assumed one day I'll just do the podcast from there. But I never really I don't know. I haven't worked towards that at all. But is it? Is it as trance wasn't as transformational for you as other people describe? It was? Is it just amazing to just settle into a place where these people are as natural and is free and comfortable as you feel in your own life except now there's others around you.
Kelly Griffin 34:17
Yeah, it was interesting to see how how people live differently with this. So adults that had you know, I wear an omni pod. And so I would see adults with an omni pod on the back of their upper arm, you know, just hanging out, you know, it's Orlando, it's hot. You're wearing short sleeves and there's your Omni pod. It would never occur to me to have an omni pod visible. You know, I'm always trying to find places where it can hide. So I just thought that was so fascinating. And it's like, you know, you go to work like that you you go and out in life, and I was so impressed. You know, that's, that's just amazing. And just to be able to talk to people, I think that I was already doing things as far as technology was concerned, there was nothing there. I tried a couple of other pumps when I was there, you know, they have demonstrations for you, they'll let you take a pump for 24 hours or something just to wear with sailing. And I did it and you know, I walked away kind of knowing nothing's gonna take me away from my Omnipod.
Scott Benner 35:30
Delightful with all the rubber tubing.
Kelly Griffin 35:33
You know, it's like, I'm rolling around at night, I'm getting caught and stuff. I'm like, Okay, this is not gonna work for me. But it was good to try. Because I had talked to people who said, I can't understand how you could wear an omni pod. Why don't you try this? Or why don't you try that. So I wanted to see what it was about. But I like that there are things for every lifestyle, everybody has different needs. And so that accommodated my needs best. And but just meeting the people, I have people that I am still in contact with today that I met at friends for life. And it's just nice to know that if I need to reach out or if they need to reach out, there's a whole community out there. And most of it, I'm finding online now they're the Facebook groups and or podcasts, you know, and you can really stay well informed and feel that you have a connection.
Scott Benner 36:31
I don't I don't know how people do it otherwise, because in real, you know, in real life, where are you going to? I mean, how do you even have time for that? Right, like right now. Now, not only is diabetes that says but I'm gonna say something, it's gonna sound counterintuitive, but not only is diabetes, taking up some of your time. But now I have to go to lunch with people who have type one diabetes, or make special, you know, movie trips, or, I mean, not that that wouldn't be great, once in a while. But when you need that feeling of I don't know, if it's camaraderie or just not feeling alone, you need it, you need it when you need it. You don't need it next Saturday at 11 o'clock in the morning, like, right, you know, so it's great that it's available. It's amazing that you can click onto a Facebook page and be like, wow, everyone here has diabetes or know somebody that does it. It's immediately everything I say is understood. There's no you know, the shorthand works. Now, I don't have to long explain things. This is this is this is an amazing thing to be surrounded with. And at the same time, you can walk away with it from it when you're done.
Unknown Speaker 37:34
Yeah, yeah.
Scott Benner 37:34
And you said something earlier about seeing how people do things differently with diabetes. It is really, it is interesting that it's, we all do things differently in our lives, but most of it's not visible. Right. Like, I mean, like I can't I don't know if I can think of something off the top of my head. But you know, the the pattern that my day takes is the pattern that I've set up. And your day probably takes a different pattern. And if we really watched you and I you'd be like, well, Kelly and Scott live very different lives. You know, I mean, they she makes different decisions about this. Now he does and everything. But when it's the diabetes, when it's a pumper, it's a CGM, or it's you taking an injection, it's out in the open, and you can really go wow, that person does this. I never would have thought to do that. Right. And you kind of build your perspective. And then you can adjust or an or, or do what you did and sit back and say I'm really comfortable with what I'm doing.
Kelly Griffin 38:28
Yeah, yeah, there was nothing that I needed to change. I was out. I think the most thrilling thing for me about friends for life was getting the updates on the artificial pancreas systems. I think that was the most exciting thing that I wanted to hear. And that was, you know, they had sessions and seminars, and I loved all of that. So yeah, very
Scott Benner 38:50
cool. I have to I mean, I just put up, you know, by the time this goes up, it'll be months ago, but I just put up a new interview with the CEO of the president of Vimy pod, and she talked about everything they have in their pipeline, and one of the things was their horizon system, which is there.
Unknown Speaker 39:07
Yeah.
Scott Benner 39:08
And it's just she's talking about this is great. You know, like, this needs to be now Can this be now and then, you know, well after we do this and this the FDA says okay, and you know, like yeah, in a year or so,
Kelly Griffin 39:20
you're like like great interview I did you listen? Well, it was very timely, of course, because of the is it animus that that closed? That is close?
Scott Benner 39:30
Yeah, that was dumb luck. If you are somebody who's listening to this now and listen to that back then, I was supposed to interview Shea see from ami pod, I'm gonna say two months ago and throughout a screw up on my end, it didn't happen and then when we just rescheduled it for when it fit again. And it happened to end up being like a handful of days after atomists said, we're not making insulin pumps anymore. So the timing of it just sort of worked out as far as the information being really kind of important in the moment. I
Unknown Speaker 39:59
Yeah,
Kelly Griffin 40:00
yeah. And I, you know, been reading about some of this and, you know, some of the blog posts that people have been putting up, you know, and how it's really important for us to have competition in the marketplace of pump systems because, you know, I, somebody asked me, Well, what would you do if if they didn't make Omni pod anymore? Well, I got I don't know that I could go to a tube pump. I think I might try to find a way to make MDI work again,
Scott Benner 40:32
that's interesting. No, I think it is definitely one of those pieces of technology, that it's difficult to train. I don't I'm not I don't mean to be insulting if someone's wearing a tube pump, because if it weren't, for you, it's wonderful. But it's a walk back, right? You know, when people look at the on the pod that were tubes, what they think is, oh, it sticks up off my skin, I have something that's attached to me, that's, you know, bigger than the thing I have attached to me now, which is, again, perspective is, you know, there's something something on your skin that's a little bigger or something on your skin that's smaller that runs around with 19 feet of tubing to something that's bigger, like, what's the something's attached to something somewhere? Yeah, you're not getting away from that with an insulin pump anytime soon. And so, you know, any but the lack of the tubing and the not disconnecting for activities and bathing and things like that, to me is kind of like I, you know, I'll walk you know, Arden's getting older now, but she get a shower, and you kind of wander into hand or something, and this pump is sticking on or, you know, wherever she's got it, and she doesn't know it's there. Yeah, you know,
Kelly Griffin 41:35
you forget about it. I think there are a couple of times recently that I've noticed, oh, it would be nice to be able to detach, like you can with a tube pump. But I think overall, this is working out best than if I'm backstage doing a costume change or something. That was that was my thing. That was why I would never go on a pump because my endocrinologists were always telling me about the pumps with tubing. And I said, No, no, no, no, I'm not going. And you know, doing a costume change with this, because then it's going to, I'm going to have to explain it, you know. And with the Omni pod, I just put on, you know, a camera Sol, and maybe some bike shorts or whatever. And I just wear that under my costume as most women are doing. No one even knows it's there. And if I've got to do a public costume change, there's there's nothing to worry about. I
Scott Benner 42:33
don't have to have those conversations, though. Yeah. So I have a question. I have a question you so you listen to the show. Did you ever hear Episode 71 called 14 going on? 50 with a kid named Ian. Who?
Unknown Speaker 42:47
I'm sure I did. Yeah. Is it is
Scott Benner 42:49
it is a student and an actor?
Kelly Griffin 42:51
Yes. very mature young man.
Unknown Speaker 42:53
Yes,
Scott Benner 42:54
yes. Okay, and what's up? That was the best. And so an Ian was, was his fear was if he let somebody know that he had type one diabetes in his performing life, that they may just not let him have jobs.
Unknown Speaker 43:09
Yeah, absolutely. And
Scott Benner 43:10
do you ever think of that?
Kelly Griffin 43:11
Yeah. And that was my initial thought, you know, I mean, forget once you get the job, how you're going to be treated? The question was, are you going to get the job? Do they understand enough about type one, to know that you can do the job? You can do it? Well, and you know, no one's going to have to stop the performance for me. You know, I will take care of this in such a way that it will be fine. And I don't know that everyone has that information. Oh, they know.
Scott Benner 43:41
Yeah. Well, and rightfully so we talked about our way there's no real
Unknown Speaker 43:44
reason, no reason for them to know.
Scott Benner 43:46
Yeah. But there isn't a there is. And this is something I always I feel badly when I see people get so upset about oh, this person said something unfeeling, or they didn't understand this. And I'm really angry. I'm like, you can't, there's 1000 things about their life, you don't know, you just we're not talking about it and that you shouldn't be. Listen, nobody should be saying anything stupid. But in a world where I'm pretty sure someone's gonna say something stupid,
Unknown Speaker 44:11
right?
Scott Benner 44:12
Where I'm pretty sure someone's going to say something stupid, it's reasonable to think that they're going to say something stupid about your disease that you they don't know anything about, they're going to take some sort of what seems to them to be intellectual leap and they're going to make a mistake or they're going to rub you the wrong way or whatever it's going to be in your regular life you can speak up and stop them but in your but in the moment where you're performing. And then somebody has to pick between you and a bunch of other people that diabetes very well could look like. Just one more thing for them to worry about.
Unknown Speaker 44:45
Yeah.
Scott Benner 44:46
And so it is completely reasonable. Not to not to let them know and at the same time I'm I advocate on here all the time for just being completely open with it and you know, then just landing wherever you fit, but If you're looking for a job, you can't you can't go to 35 performances to find the, you know, the 10 people who actually like what you do then to find the one that doesn't, you know, think your diabetes might be a problem. That's Yeah, that's untenable. You know?
Unknown Speaker 45:13
Yeah. Yeah. You know, it
Kelly Griffin 45:16
hasn't been a problem, Scott. I mean, of course, I don't walk into an audition and say, Hi, I'm Kelly with the type one. But no, I it's just never been a problem. And I find that, you know, when I am in performance, I will have a discussion with the stage manager, that's the person I usually go to and say, Look, this is my situation. Because, you know, oftentimes, there are rules backstage, no eating and costume. No food beyond this point, you know, that kind of thing. And so, before I get in trouble for, you know, having a snack or taking a sip of juice and costume, I will say, you know, look, I have type one diabetes, I will then give a short explanation of what that means. And generally, when I say insulin pump, their eyes get really big. And it's like, Okay, this is something more significant than I might have thought about that. Yeah. And, and I've never had anyone say to me, okay, so you're going to have to take your costume off before you have a sip of your juice. You know, it's,
Scott Benner 46:25
it's why is Kelly naked in the corner camisole? Well, her blood sugar's low. And she's not gonna get a stain on that costume. Well, you know, it's funny, I've said this, a couple of times, Arden's played softball for the same bunch of guys forever. And as much as they would tell you, they understand she has diabetes, they don't understand. They just, they're aware of it. And they think they know something about it, but they really, they sort of don't. And so when you explain it to somebody, you know, you have the time to sit down and thoughtfully be clear about it with them. It's not a problem. Here's the thing you you joked about, I don't come in the door and say, Hey, I'm Kelly, I have type one diabetes. Yeah, if you do that, and someone is put off right away, be clear, they're probably not put off by the diabetes, they're probably put off by the fact that you're crazy. And so right, that you've launched in the room yelling about your disease, I have diabetes, and if you don't like it, and belanja, I'm gonna have to do this. And they're probably like, oh, wow, I don't care about the diabetes. It's you I don't like Yeah. And so that is, you can, I've had that feeling where I've been advocating for Arden at school. And I wrote about it at one point, because I realized, I'm like, Oh, my I sound like a lunatic. You know, I'm only saying the things that that apply, but so much of it applies. And there's so many buzzwords and things they can't absorb. And I'm just saying them one after the other. I can't do this. Because because I'm going to be the nut. I'm going to be the nut parent, they're not going to ever listen to me again. You know, even though what I'm doing is not crazy. It feels like that to the other person. Right?
Kelly Griffin 47:59
You have to be cautious, and you've been living with it for so long. I mean, don't you find that even within the type one community, you might say something? And excuse me, if somebody's not familiar with it, then they may not even know the terminology.
Scott Benner 48:16
What happens when I get notes all the time? You said this? What does that mean? Yeah. And I'm like, okay, and I get it, because, you know, I was just having this conversation, Callie last evening with with my person at on the pod who, who might kind of liaison for these ads and things like that. And I said, you know, that the Thai the diabetes community online is like, it's like shedding a snake skin. And she's like, What do you mean? And I said, new faces, they come in, and they last about six months. And then most of them go go, they've absorbed what they need. And they're on their way, which I think of as being beautiful. Like it's just I came I didn't know something, I know it now. I'm going to go back to my life. Some people stay behind and try to dispense wisdom to the new people coming in. But for the most part, the bulk of the people are new, and they're either lost and looking for answers are so new to diabetes. They don't even have time to know if they're lost yet. Yeah, right. Right. And those people are as as what's the word I'm looking for? They are as a result, they're as much of a raw nerve as they will ever be in their life with diabetes at that point, and the tiniest thing could send them over and think like why are you speaking to me like this? Why would you say somebody how come you can't be more feeling and it is, I see it as being is a kindness to sort of relax and Excuse me, I'm getting a phone call. This is odd. Go with a sorry, I can't talk right now button and see what happens there. It's just a it's a bad time for them and they need other people to be understanding of that. Yeah, you know, and at the same time, some People take that anxiety and do a really weird thing with it, they they don't, they lash out. It's just a fascinating time in your life where nobody can really say anything to you, that's going to be comforting. And it is very easy to to get upset about almost anything. So right being around other people who understand you is maybe the most important part.
Kelly Griffin 50:20
It really is. And, you know, think thank God for this online community. I, you know, I found the Omni pod online, I remember when my endocrinologist was telling me, I want you on a pump. And I said, No way. I'm not wearing, you know, one of the models that I saw, and I just started looking online, Surely there's something else, there's got to be something else. And then I saw this tubeless system, and I'm thinking, Oh, you know, maybe I could do that. And there was pushback. But because, you know, it wasn't something that the office was that familiar with. Yeah. But, you know, they work great.
Scott Benner 51:03
It happens a lot happened to me. And it's happened to countless other people, where they just they don't know what to say. So they start saying other things. Yeah, I just saw a person just the other day, say, you know, I don't want to I don't want to cause you know, anybody an argument here online, but my endo told me that, you know, at six years old, it's not a proper time for my daughter to use on a pod. And I was like, what does that mean? Like, that's a meaningless statement of you know, but you know, too thin. I've heard him say, You're too thin, you're too chubby, you're too this You're too that you need your needs or this or that. It's all just, it's all nothingness. But you know, like, it's just it's it's their hang up or their excuse, because like you said earlier, maybe they maybe the maybe the practice pushes another pump for some reason, right? Maybe it's easier for them. You don't know what the reasons maybe they have a cable in the back that hooks to a Medtronic pump and downloads your information and they don't have the cable for the on the pod PDM. They're like, Well, you know, Medtronic is better. You don't know why people so Yeah,
Unknown Speaker 52:03
exactly. Exactly. It's
Scott Benner 52:06
a there's a lot of difference. So always advocate for yourself and do the research and, and be proactive is it's it's amazing advice, actually. Okay, so you said you you're I'm let's talk about you for a second. You said you're involved in classical music. I my favorite. Here's something nobody knows about me. I guess. The unaccompanied cello is my favorite music to listen to just Hello just by itself. That that is the if you want to see me cry, take me somewhere where someone's playing a cello. And then I will cry at some point. Because it hits me so incredibly, just deeply. What do you do? What is your when you say you're involved in classical music? What do you do? Can you be more specific?
Kelly Griffin 52:50
soprano I sing opera. Well, you have a wonderful young person, right? Who Who does your music for you?
Scott Benner 53:41
Yeah, music for this podcast was written by by a person who was nine years old when they wrote and recorded it and everything for me.
Unknown Speaker 53:49
Oh, that's fantastic. I love that name.
Scott Benner 53:51
Sydney. Yeah, she did a great job. I don't know if I mentioned that long time. When the podcasts first started, I could only kind of look into the world of diabetes to tell people Hey, I'm starting this thing. And her father Rob worked for works for Roche. And I had met him a long time ago, and just a very musical family and, and I knew about his daughter, and I said, Hey, do you think Sydney would be interested in doing this? And he was just so excited, like, I'm gonna pay her and he was like, Oh, okay. And, and she was just really thrilled. And I thought you did a great job. And if sometimes you think about like, Oh, I should change it. And I'm like, No, I like this. So, you know, just sometimes you just want to change things for the sake of changing and I guess but I don't know. I don't think about that as often as I as I did in the beginning.
Kelly Griffin 54:36
Now. You might lose some listeners if you open your podcast with opera. I don't know.
Scott Benner 54:41
You think that would just push people away? Would you do can I? I should I should get one of the ads and have you sing it? That'd be fantastic.
Unknown Speaker 54:51
That would be hilarious.
Scott Benner 54:52
For me for no one else like you. Like people would be like fast forwarding and throw it I'm like, No, this is wonderful
Kelly Griffin 54:59
to hear it and what like butter commercials that you know,
Scott Benner 55:03
Cindy, is most of your work on stage or do you? Do you get that kind of work do you do? Because in Manhattan, there's a lot of opportunities to do. Yeah,
Kelly Griffin 55:10
there are a lot of opportunities. Now my work is pretty much on stage. So it's really staged operas, concerts with orchestra or without and recital kind of work. So it's, yeah, it's all stage based work. Do you do?
Scott Benner 55:32
It's gonna ask if you find it fulfilling, but do you love it in a way that I wouldn't understand? Like, is it just a passion of yours? Or is it something you like? How do you how do you even realize you can sing opera? I guess is a great question. Well, I
Kelly Griffin 55:44
have a Yeah, that that came about quite by accident. I was taking voice lessons as a kid because I always wanted to sing. I remember, I was going to private, religious school and I remember getting an assignment. You know, what do you want to be when you grow up and find a newspaper or magazine article and write a brief synopsis? I was very young when all this was happening. And again, private religious, I found a picture of Prince. May he rest in peace and his scantily clad
Scott Benner 56:25
back up Ching, or is it Sheila E? Who was that?
Kelly Griffin 56:28
I think it might have been vanity and or apollonia. You go. Yeah, thank
Scott Benner 56:33
you very much.
Unknown Speaker 56:34
So you're not alone. By the way,
Unknown Speaker 56:39
Kelly, I'm
Scott Benner 56:40
gonna cut you off, there's a strong possibility this episode's gonna be called end or apollonia.
Kelly Griffin 56:50
Oh my gosh. So what I love about Okay, I have to say to my parents, thank you. Because I showed my mom You know, I always showed my mom my homework. And she was going to read through the the summary of you know, what I wanted to be when I was going to grow up. And so she called my father, he said, to take a look at Kelly's assignment. Because they didn't want to break my spirit. Because of course, I didn't understand that there was anything inappropriate about what I was doing. And I just knew I wanted to sing, you know, when I wanted to be on stage, and my dad looked at me said, this is very well written. And he said, if you want to be a performer, then maybe we should make sure you learn how to play an instrument, and maybe we should get you some dance classes. And, you know, so he just encouraged the basics. And I started taking voice lessons. And when I took voice lessons I was singing, like Bette Midler and Whitney Houston, and show tunes, and you know, things like that. And I think my mom came in on a lesson one time when I was again, probably a young teenager. And I was singing, I think it was something by Whitney Houston, that was probably inappropriate for a teenager to be singing. And she said to the voice teacher, can we find something else? Or Kelly to sing? You know, that's not so romantic in nature. Can we stick with something else? And shortly thereafter, I began singing art songs, which are, you know, classical music pieces, short selections, and, you know, school, enrolled me and in competitions and things and it was like, my own little thing that nobody else did. And it was, it was good. They kept me out of trouble as a year of our parents sense of propriety, actually led us sort of towards the type of media.
Scott Benner 58:58
That's interesting. Yeah. And when you're when your dad looked at that article, he looked at your mom and he was probably like, I think she wants to be a stripper. Look at this photo.
Kelly Griffin 59:06
And I wanted to, you know, what was funny was that I wanted to be Prince, you know, not not the to girl,
Scott Benner 59:13
I'm gonna go out on a limb and say we'd all like to be friends. Except for the fear of getting a life saving surgery because of his religion apparently is by the way, apparently what happened to him he was in a great amount of pain, because he wouldn't get a surgery because he didn't believe in it religiously. In the in the in the eyes of the idea of opening his body up.
Kelly Griffin 59:34
I've heard that and I've heard that the you know, whatever. overdose there may have been could have been kind of quite an accidental addiction, but who knows? You know, nobody knows
Scott Benner 59:45
that aside. I just want to say right now for the record, if anything will save my life. I'm up for it. And so that's it isn't. You want to be Prince? That's great. You have a like a big tall purple shoes or something?
Kelly Griffin 59:57
No, no, no, no, I just, you know, it was actually At that time, you know, the music was really, really big. And I just knew that I wanted to be a performer like he was. And, you know, you start taking voice lessons, and I realized that number one, my personality, and number two, my voice really aren't suited for pop music. Listen, if I could be Beyonce, I does stop singing opera in a minute. But like, it's just that's just not what I do. I don't think my personality would do well, I don't think that I know vocally, I don't think I would do well. And so you really learn where, right where you fit, you know, what's my, what's my genre? And that's classical music. That's what I do. That's excellent.
Scott Benner 1:00:46
I guess so opera doesn't get you a yacht is what you're saying?
Kelly Griffin 1:00:51
It can I think, or maybe, to, you know, opera isn't in demand as much as it was even 20 years ago. There was a time when I think probably the top 1% of opera singers were doing very well. And they probably still are. Yeah. But yeah, you do it at this point. Because you love it.
Scott Benner 1:01:11
Give me recordings that.
Kelly Griffin 1:01:15
Yeah, there are some things on line, I think. And I have some things that I use for auditions. I don't have a like a CD or something that I that I sell.
Scott Benner 1:01:28
We are coming up on an hour. So this has been very casual. And I was very careful not to talk too much. Because I got a scathing review that says I'm starting to talk too much on the podcast. Oh, said that's what the podcast is. Yeah, you should have seen me here. This is gonna go against the person who left the review. So hold on tight, whoever you are. I saw him in my I'm in. First of all, Joking aside. I like people like I don't I don't feel badly about the review. She still said she really likes the podcast, she just said that. I'm talking too much. And and I, I don't have trouble with that. I wrote a book. I'm completely capable of hearing people hate what I do. And I can keep moving. I'm not I'm not. I'm not bothered by that. You can't be if you're going to do stuff like this. But I was in my mid my kitchen, I stay away from it. Can you believe this? I look at this. And she sees it going on. I said, she said she loves the information that comes from the podcast, but I'm talking too much. And I'm like, I'm waving my hands around. Like the information comes from the talking. I said, I said I can't I can't, I started getting all like pretend agitated and messing around. And I said, isn't it interesting that, that I've crossed some sort of a line for like, you know what I mean? Like, she likes what she's hearing. And it's helpful to her, but I not delivering it to her the way she wants it delivered to her. And I thought I can you imagine if I spent my time trying to fine tune the podcast or anything I did in my life for everyone's desire?
Kelly Griffin 1:02:54
Absolutely not, there are too many people that are that are enjoying it and learning from it. And I think you know, not every EDM is for every person. And so that's why we have lots of different podcasts. And you know, lots of different people.
Scott Benner 1:03:10
I said, sometimes I don't talk very much at all. Sometimes, by the way, sometimes the guests will come on before we start recording. So hey, I'm really nervous. So I talk more to try to help them get comfortable. You want to kind of cover for them a little bit. I don't say that in the podcast, because that would be rude. I you know, and sometimes there have been people not very often I have to say, like one doesn't pop in my mind right now. But I know it's happened where you, you ask somebody a question. And their answers are very short. And this is an hour. Do you know, I mean, like something needs to be said. And so I start relating old stories or something like that, trying to get them to find, you know, whatever. Listen, yeah, here's my review of your review. There. What do you think of that? Now, I'm just kidding. The feedback was actually great. I thought about it for a while. I'm like, let me make sure I'm not. Because I am chatty. And we are from the northeast, Kelly. I start talking, I get faster as I'm speaking. You know, I heard from a guy the other day from Texas, and he was like, I'm just starting to get used to how fast you speak?
Kelly Griffin 1:04:09
Oh, wow. Yeah, I guess it is, you know, it's very individual. But that's the great thing about the podcast is that you have all kinds of people on from all different walks of life experiencing their diabetes in all different kinds of ways. And, you know, we're gonna find some people that we relate to a lot, some people not so much. And then some people like I was saying earlier and, you know, trying to hide things, you know, I'm much more open now. You know, again, not shouting down the street. I'm a family with the type one. But I mean, I'm learning that it's not such a big deal to live with this, you know, for other people to know that I'm living with us and it's a great time to educate.
Scott Benner 1:04:48
And you are having that feeling because of this community that you found. Oh, yeah.
Kelly Griffin 1:04:53
Because of the community because listening to the podcast, and especially listening to the parents, you know, I mean, Kids have no choice. They can't walk through school and pretend that they don't have type one diabetes and you know, discreetly just, you know, handle it on their own in a way that no one will ever notice. I mean, as discreet as you and Arden are, and her not having to go to the nurse's office and all of that people still must No, it just it is what it is. And as you're saying that I just texted Arden because I need her to test her blood sugar. So she's sitting in a class right now and she's gonna just pull her meter out or pull or PDM out and she's gonna test right there. And so
Scott Benner 1:05:32
yeah, yeah, so and it's, it's just unavoidable. Like, she just she's been drifting down while we're talking. And I'm sort of hoping that maybe the next comes off by a few points, and she's a little higher than it says, but she might not be and then it's thanks. We're gonna have to do a tiny correction 20 minutes before Pre-Bolus for lunch, but it is what it is, you know, so that's right. Yeah. But yeah, that's just it's a, it's a really cool to hear you talk about it, because you're not hiding, and you're not, you know, you're not having a coming out party for your diabetes. But at the same time, you found a really great balance between the two of them. And it's not something that sounds like you're impacted, adversely bite in either direction. It just it's like, it's, it's where your comfort level lies.
Kelly Griffin 1:06:18
Exactly. It's, it's no different for everyone. This is where I'm comfortable. I mean, look, I'm speaking to you about it on a podcast. So at this point, you know, I'm not terribly worried about it. But it's, it's been fine. And, you know, thank God, we have the technology, because, you know, I'm by myself and I rely on the Dexcom to be at night and I, you know, all of these things, and it's great that it's available.
Scott Benner 1:06:45
Now I agree with, these are the hardest episodes to end, because we're just so conversational, that it doesn't feel like there's an end point. So that I just have to be the one who yells, it's been an hour get off and
Unknown Speaker 1:06:55
found that it's up,
Scott Benner 1:06:57
you're done. Kelly with the type one diabetes, thank you very much for coming on. I love that you sing opera. And I can't wait for you to send me an mp3, any mp3 you want. I don't have to play the whole thing, even if it's just a little clip. And I'll just meld it in somewhere in the podcast. In here, if you don't want to, you know what if you don't want to keep that to yourself, and just send it to me anyway.
Unknown Speaker 1:07:23
I'll get you something.
Scott Benner 1:07:25
It's my it's my same advice for reviews. By the way, if you're really enjoying the podcast, leave a review. And if you're not, you're not Siskel and Ebert Keep quiet. That's all fine. Another podcast, not just mostly I'm kidding. But at some point, um, it's free people just like, I don't know, I guess they were trying to be, don't you think they were probably trying to be like, I really liked this podcast, I don't want it to get bad.
Kelly Griffin 1:07:49
It could be you know, maybe it was a listener who has been, you know, binge listening. And, you know, just had a
Scott Benner 1:07:56
couple in a row where I was chatting. Yeah. Well, you know, it's funny, too, if you're listening right now to the podcast in real time, aside from the one recently with the the Omni pod, President, these are things I recorded three months ago, like when somebody is listening to this, you know, you're going to be listening, my best guess is you're going to be listening to this in January or February, we did this in October, you know, because I can't be in a situation where I'm like, Oh, my gosh, the podcast has to go up, I quickly need to put one together. I don't ever want that to happen. So right, I record them ahead. So that so that they're always available. And you know, we've made promises to people about advertising and things like that. And so I'm trying to be responsible, but my life changes to, you know what I mean? Like, during times when I get on here, and I'm tired, and you speak more, or you're doing a great job, and I don't say as much or I think that it's more conversational, we go back and forth. Or it occurs to me to say something that takes five minutes to say, because that's how I think, you know, like, there's no, I'm not being long winded because I like hearing myself talk. I have found over my 46 years that this is pretty much the best way I I have to, to relate something, you know, I'll tell you one quick story, and then I'll let you go. But my son was writing his essay for college yesterday. And he is a very good technical writer. He is not a good creative writer. And this, of course, called for a little bit of both. And he finally said to me, can you look at it, I looked and I read and I said, Hey, the parts where you're writing about this flow really well. You seem really comfortable when you're writing when you get to talking more about how you feel. It's getting clunky. I said Come sit with me and I'll show you how I would do it. He's like, well explain it to me and I said, I can't like I genuinely, I don't know how to explain it to you. Well, you know, I said but I can do it. You can watch me. I'll do it out loud so you can hear and you know, and then just take from it what you will and we sat down for it. This is gonna sound crazy, but I guess we sat down for about two hours. And we wrote and edited and wrote and edited together until I started feeling him speaking words over my shoulder, that I was thinking I was gonna type. Then I thought, Okay, he's getting it. Like he figured out how to access that part of who he is and how to talk about it clearly. But I am not the person. I've said it a million times here, I can't just give you instructions. I don't, I don't know how to do that. I believe that at my, at my core, I'm just a storyteller. So that's the way things work. For me, it can be very, very frustrating at times, because I sometimes have to tell the story to myself, while I'm telling it to you. And the last paragraph I wrote for him as an example, I wrote the first sentence in four or five sentences later, I was finished. And I told him, I said, Would you believe if I told you that five minutes ago, when I wrote the first sentence, I did not know what direction this paragraph was going to take what I was trying to say with it, or, and I had no clue that what came up in the last sentence was ever going to come up. And I said, I know that might sound crazy to somebody like him, who's a good technical writer who would plan out what he was going to say. I said, but I'm just accessing a different part of myself. So it just has to kind of flow out the way it flows out. And not all of the words are valuable. So you know, when I'm writing, I can go back and drop lines and cut things out and do things like that. But when I'm talking, you're gonna have to listen to all the BS, the middle to get to the good part. Because that's all I got. So Well, that's all you know. I mean, it's just it is what it is. But I do get that it could be. As I'm even thinking back on the last three minutes of me talking now I'm like, God, I could get infuriated by that if it was somebody.
Kelly Griffin 1:11:43
But you know, what people are attracted to podcasts and any kind of entertainment due to the personality of the host. So it's that same personality that brings people in. So if someone doesn't like it, then that's probably, you know, someone who maybe needs to, you know, find another another host, because that's just personal preference. But I don't think you need to stop being you because that's what brings us all in. That's how that's part of how you care for your daughter. So well, you know, it's, it's all encompassing. So
Scott Benner 1:12:14
Kelly, I've been married to a woman named Kelly for 21 years. And I'm not comfortable with a person named Kelly being this kind to me. So we have a podcast right now, if you want to tell me that I'm doing something incorrectly or asked me why I have not, in fact, fixed the pole on the rug. that those are the sorts of things you should be directing me right now. You've made me very uncomfortable with your kindness. And I have to stop. But no, seriously, you were very kind. And I appreciate that, because that is at my core how I feel about it. But it's tough when someone tells you the thing you feel like you're doing a good job with. You're not and you're like, Oh, I'm not Oh, okay. And it's it's it's an IT, like I said it doesn't crush me. I'm not like thrown off by it. I can't imagine I would patently changed what I was doing. Because of one voice. There's 100 other reviews on there. And most of them are, you know, are different. But at the same time it does, it does occur to me that it's important to stop and listen, and and say this is someone's perspective, and it's completely valid. So maybe I talk too much. I don't know what to do about that. So I can't I don't have any time to edit this thing down. You people know how much time it takes just to get it recorded and online. It would be you know, when you listen to a professional podcast, you know, are the ones out in New York. And at the end, they're like I'm the host, and this is my co host and our editor was and this person did the sound. That's it's a lot of work, you know, so I don't have that kind of I don't have that kind of system going over here. You know, but one day, I don't know, maybe one day?
Kelly Griffin 1:13:50
Well, yeah. And whenever you step out and try to do something, be prepared for that kind of criticism as you as you know, you know, but I think it's it's better to step out and do it than to not because you're afraid of the criticism.
Scott Benner 1:14:04
Kelly have we just by mistake drawn a parallel between what I was talking about element of type one diabetes, I think we have,
Unknown Speaker 1:14:11
it could be a great time to stop.
Unknown Speaker 1:14:15
Thank you so much. God, it was a pleasure. Thank you
Scott Benner 1:14:30
so much Kelly for coming on the podcast and for sharing your music which I'll play at the end again. Also a huge thank you to Dexcom and on the pod for continuing to support the podcast with ads. Thank you to you guys for sharing the podcast with other people downloads grow every week. It is because you're sharing please keep doing that. Also, I just saw all the great new five star ratings. You guys left on iTunes and a couple of really great new reviews. Thank you very much. Did you know you can now leave reviews on Amazon Do you know why you can do that because As the Juicebox Podcast is now available for Alexa. That's right. If you're an Alexa user, all you have to say is Alexa enabled Juicebox Podcast. After you've enabled the Juicebox Podcast skill on your Alexa device, you can ask her to do all kinds of things, play a new episode, subscribe, rewind two minutes, go back five episodes. It's really crazy. I'm sure you will actually users know all about it. I don't have Lexus. I'm not 100% on top of this. But what I've been hearing from people who do have Alexa, I think this is something that's really exciting. So hopefully in your house in your life, you'll be saying a lot of this Alexa, tell Juicebox Podcast to play the newest episode. To find out more about Kelly Griffin, you can go to Kelly Griffin, soprano.com
Unknown Speaker 1:15:44
dc
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
#162 Teach our Children Well
Understanding both sides....
Is what you say about type 1 diabetes to your teachers and administrators always what they hear and do your expectations and needs match what they understand and are able to deliver?
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - google play/android - iheart radio - or their favorite podcast app.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
COMING SOON
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
#161 Justin Loves Mandie
D Hubby....
Justin talks with Scott about being the spouse of an adult living with type 1 diabetes.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - google play/android - iheart radio - or their favorite podcast app.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
You're listening to Episode 161 of the Juicebox Podcast. If this episode is not the best part of your day, I'm going to give you your money back, or anything of that
Unknown Speaker 0:11
money back
Scott Benner 0:12
guarantee on a free podcast. Today's episode is sponsored by Dexcom, makers of the G five continuous glucose monitor and soon to be the G six coming very very soon. This episode is also sponsored by the tubeless insulin pump that Arden uses on the pod, you go to my omnipod.com Ford slash juice box to find out more, or dexcom.com forward slash juice box.
Today's episode is really very different. Justin is the husband of Mandy Mandy has type one diabetes, Justin doesn't. But Justin helps with Mandy's type one, he sort of like a caregiver but not for a child. It's very interesting. If you're the parent of a kid with type one, I think you're gonna love the similarities in the lessons that Justin has been taking. If you're an adult who lives with type one might be really interesting for you to hear about what it's like for someone who doesn't have type one to be this involved. Listen, I like all the episodes, that's why I put them on. But this one's got a really sort of different perspective. And I think you're going to quite enjoy it. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise Always consult a physician before being bold with insulin.
Justin Robbins 1:45
My name is Justin Robbins. I am married to a type one diabetic. We are both in our early 30s. She was diagnosed when she was 14 years old. April 2000. And this is this is kind of our our story. So you reached out.
Scott Benner 2:08
Because I think you have a unique perspective, right? You're, you're an adult who doesn't have type one. Do you have any kind of to tie to? Do you have any diabetes on your life?
Justin Robbins 2:17
No, I have I have no diabetes, and no no history of it in my family either.
Scott Benner 2:22
Okay, so you marry a girl who already had you know, she has type one to begin with? Right? So correct. When you started dating? How far into dating? Were you? Did she tell you on the first date?
Justin Robbins 2:33
was actually when we when we first met. We We met at a a kind of a dance place. And she had she had tubing test hanging out there. She was already on a pump at that point. Right. And we, you know, conversation started and I I just kind of I don't know if it was rude or not. But I said, you know, hey, hey, what? What's this? That Oh, that's my, my insulin tubing. And I said, Oh, okay. And then then we went out on our first date. And she told me all about, you know, being a diabetic and, and basically, you know what I was getting myself into? And I it never, it never even occurred to me that that was a negative thing. Right? She's always been very positive about it. So.
Scott Benner 3:27
So I imagine at first if you I wonder if you thought like, is that tubing? I wonder if it's going to like, What if she has a drink with her somewhere? And she's just like those hats at the football games, which appears in the top right in the struggles that come down?
Justin Robbins 3:39
Well, to be completely honest, I kind of I you know, I didn't have a whole lot of medical knowledge. I thought it was a feeding tube.
Scott Benner 3:47
Okay, even so, is that what you thought before you asked her? Or is that even? Okay?
Justin Robbins 3:52
And yeah, when I first saw, that's what I thought. Interesting, huh?
Scott Benner 3:55
I don't know what I would think it I wish. I mean, I don't, it doesn't matter. But I do wonder if I was completely just disconnected from this completely. And I saw that, like, what would be the first thing you always hear people say, of someone came up to me and asked what that was. And some people are put off by that idea. And some people don't care. And I think we all need to sort of understand that there's no way that somebody outside of this world would have any idea what that is.
Justin Robbins 4:18
Right. And I think it's always kind of in the context of pallets as to she never mind filling people in on on her, or Dexcom or her pop, you know, her pump or anything like that. But sometimes when she doesn't mind if you come up and ask or anything like that, that sometimes people will grab it, or touch it and that's kind of fast. That's a little bit of a put off. Yeah.
Scott Benner 4:44
It's fascinating to think that anyone would come from and touch you in any specific way like that. Are we saying her name? I'm sorry?
Justin Robbins 4:51
Yeah, yeah, her name is Mandy. Mandy, okay. All right. So
Scott Benner 4:54
Justin and Mandy, meet, date, fall in love. Get married. And now, you've described yourself as Mandy's, like kind of primary caregiver like so. I didn't ask you in any kind of notes, because I don't like to know too much before we're talking. But I'm interested in that, like, so you're pretty involved in her kind of moment to moment diabetes life?
Justin Robbins 5:16
Absolutely. Actually, we just had our endo appointment yesterday. And I try to be as involved as I possibly can. Mandy is a TA as an RN, she, she's actually specialized in pediatrics. And so she, she works nights. And during the day, it's kind of my job while she's sleeping, monitor her glucose levels, and make sure that she's where she needs to be. So that way, she gets the right amount of sleep and isn't interrupted by it all the time. I help her change all of her sites I you know, try to monitor what she's eating and reminder to Pre-Bolus. And, and, and we both listen to the the Juicebox Podcast.
Scott Benner 6:14
Is this something that How did that happen? Right did I mean like when you guys meet the first time, you really feel like you have connection with her with her diabetes, and you're involved in it to she asked you do you offer? Does it happen naturally? Does she say, Hey, I'm struggling with this. I need help. Do you just I mean, what's the there's got to be a pathway into that, like somebody you didn't just look at her one day and say, Hey, I can handle a lot of this for you. So you don't I mean, so how did it start?
Justin Robbins 6:41
No, it was actually while we were dating. A while into after dating, we we decided to move in with each other. You know, it became on a on a day to day basis. It was something she was going to have to deal with. And I knew how involved she was with it. Although not always taking the best care of herself. She was always very involved in it with others like she even when we first started dating every summer, she always dedicated time to go to a diabetes camp that she had went to when she was a kid that helped her out a lot. And I knew how involved she was. And I knew that it was it would be important that if I was going to continue on with this girl that I become involved to was it was almost kind of a, you know, saddening one time when I had went with her to one of the diabetes camps, and they were actually they had lost a previous camper. That was my wife's age, like the year before, to a diabetes related death
Scott Benner 7:51
at the end of the camp.
Justin Robbins 7:53
Well, they didn't die at the camp, but they were saying that through there. Okay. Yeah, they had met every year. And then that the following year, when I went with my wife, that person just wasn't there. Yeah.
Scott Benner 8:03
Did that scare you? Or her? Moriah? Thank
Justin Robbins 8:04
me, I think. Because, you know, I care a lot about her. And I just could not imagine that happening to her. And I kind of decided at that moment that it never would, that I would, I would see to it that, you know, her stuff was managed and that that was never going to happen.
Scott Benner 8:25
So Mandy's probably, I'm guessing a caregiver at heart because she's a nurse that's that'd be a tough job to do if you didn't have that feeling. And you did. Yeah. Drivers absolutely taking better care of other people than herself, which I think happens to a lot of people who feel that way. My question is, were you a caregiver at heart before you met Mandy before you had an experience where someone passed away or just something that just got better for you? Or did it transform you at that moment?
Justin Robbins 8:52
It definitely transformed me now I can't say I was a caregiver. Yeah. I come from a family of people in medical school, but I was never myself. So no, I never. I had an instance. I've always been, quote unquote, healthy. I guess. Never. We'll never have to at least deal with this going on. Right? That I just wasn't, you know, it was very new to me. But no, I I knew at that moment that I wanted to help her out in any way I possibly could. Okay.
Scott Benner 9:30
And this is Mrs. I'm sorry, prior to your actual marriage or, or after?
Justin Robbins 9:35
Oh, this is this was prior titles. Well, yeah.
Unknown Speaker 9:38
Okay. Um, well, I
Scott Benner 9:40
don't find that in any way. Surprising. It does really hit you like that, or it hits some people like that. Now, the part that I'm surprised by or not, or interested in, I guess, is that I know a lot of people who are adults who have type one diabetes, who don't let other people even very close loved ones into their management at all. And so did you have to talk her into it? Or do you think she was, she was like, You know what, I could use the help or, like, because that's the next part, like when you start asserting yourself, what's the response from her.
Justin Robbins 10:15
Um, she, she kind of took to it. I mean, she had never had anyone be around that wanted to help her out with it. He she comes from a very, very loving, but old fashioned family, where, you know, she would, uh, when she was first diagnosed, first got on to a pump a year after being diagnosed, or a couple years after being diagnosed, she got into a pump. And even if she were to, like, try to need to take a shot or test, and she was like, at a restaurant with her family, it was kind of expected to get up and go to the bathroom, and test. And so it was one of those things that it was kind of nobody had ever told her, you know, that they minded it, but nobody was really willing to be that helpful with her,
Scott Benner 11:08
either. Okay, so and she's also in that mid teen area, right? She's like, 14 ish, like, right, right. And there's that moment where probably, as a parent, you're like, well, they she, and she's gonna have to learn how to do it herself. And, and then there's that, you know, that underlying feeling sometimes you're like, I don't know what this is. So hopefully she can figure it out. But I hear a point Moreover, and I do think it's an important one, like, psychologically being asked to leave, to take care of it just leave anywhere to go somewhere else, especially the bathroom. For some reason, it really strikes me as insulting. I don't hundred percent know why, but, but being asked to leave psychologically could say to you, no one wants to see this. Right. And no one comes with me. So no one wants to help with this. Exactly. Even if that's not the case. You could feel that way. I mean, right, by pretty easily, I think. Okay, do you think do you think Mandy wanted to be a nurse before she was diagnosed?
Justin Robbins 12:03
Now, she will, she will accredit being a nurse to when she was diagnosed at Children's Hospital, that she, the nurse that actually took care of her, and guided her, the very scary process, and, and everyone that came in and talk to her, other than that nurse was just scaring her think you'll have this your whole life, eventually, this will kill you, you know,
Scott Benner 12:32
just wondering how you're going out?
Unknown Speaker 12:34
It's gonna be this right?
Justin Robbins 12:34
Yeah, just all these awful things. And I finally had a nurse that came in and had a little bit of sense to her and said, No, you know, no, this is, yes, this is something you will deal with your whole life. But it can be managed, you know, through insulin, you can still live a perfectly normal life. It's just something you're just going to have to deal with, you know,
Scott Benner 13:01
I can't imagine I can't imagine being disconnected a little bit from my family, as far as the management goes day to day, and having a nurse Tell me on my diagnosis, you know, in the days of my diagnosis, that this is going to kill you at some point, right? I would have been like, what you don't know, I might get hit by a car. That's hard to wrap your head around. And then Isn't it funny, like so? That experience makes her think, Well, I'd like to be a better influence on somebody when they have their moment. Right? When that when all right. And then and then I don't know if you'll ever balanced the scales, because what it seems like to me is that every person I meet with type one who is in the medical field who says that having diabetes, move them towards the medical field, it's always because somebody said something really stupid to them. And I just I always imagined like we add one but then the next time you add one, it's because you found another one. And they I don't know if you can ever tilt the tilt the scales the whole way. And having said that, there's 1000 you know, good nurses, probably for every bad one. But it just is it's I don't know, it's a very strange idea that someone would even say that. Yeah, absolutely. You know, I, I don't know. I just, it's like a lack of compassion that that is hard to put into words because even if, let's say this was true, right, let's just go for a second say she got you know, Mandy got diabetes, and what it meant was it was gonna kill her one day. Is that good to tell her on like day two, you know, like, while she's trying to figure out the insulin and all this other things, it's an odd, it's an oddity that people want to scare you into doing something instead of giving you a chance to just understand it and do it yourself. Right, exactly. That's really sucks, actually. Okay, so now I'm in. This is so okay, because I've never met somebody who's managed somebody's diabetes, like, with like, because she's sleeping right? So you're actually taking care of so let's go through that for a second. Imagine if she's sleeping. Taking care of it. And you did say she has a pump issue of a glucose monitor. Are you testing her while she's sleeping?
Justin Robbins 15:06
Now she has a glucose monitor. Okay, so the one good thing about us is we've always been kind of with the I guess cutting edge. If it's cheap, she does her research. All the time is all the time telling people things before they hit the market. Always, whether it's parents without this pay for it, I'm more than happy to sit on the phone with them. And just argue with them all day long. Or get up whatever paperwork it is that you say they require from day to day. But whether it be that or pay for out of pocket, we've we've always been good about keeping her in the best pumps and sensors. we've, we've been through just about every type of pump there is literally, and we've been through both types of sensors, but Dexcom just just works out best for us.
Scott Benner 15:59
That's the one that you landed on. How about which what kind of pump does she like?
Justin Robbins 16:03
She has on a T slim
Scott Benner 16:05
He's like, Oh,
Unknown Speaker 16:06
I like that which
Justin Robbins 16:07
people like that. We love green. We love the we love the T slim. The only problem is I cannot find any endocrinologists that have the software that can look up to it. Oh, so yeah, it's apparently their, their vendor support is not great.
Unknown Speaker 16:28
Yeah. Okay.
Scott Benner 16:31
All right. So she's pumping and she's got a dexcom and sort of shot now here. Let's walk us through a moment she comes home from work. She's disheveled has had a long evening at the working comes home. Do you guys hang for a little bit? Or does she go like right to passing out? Like, what's her? What's her like vibe, like when she gets home from work?
Justin Robbins 16:49
Well, actually, it'd be it'd be early morning when she got home. I'm sorry. But But usually when she comes home, it's been several hours since she's, she's eight. So a lot of times either she'll have some sort of snack, which we I always beg and plead or please don't let it be cereal. It is my my job throughout the morning and and even early afternoon is going to be hell. But barely trying to make her some kind of some kind of fairly low carb breakfast. We're not low carb people. But right before she's gonna lay down, I don't want to load her up with pancakes and toast and syrup.
Scott Benner 17:31
Yeah, and it's funny because it's the morning but really it's the evening for you so right what most people would think of is at 10 o'clock at night when I need a snack before I'm gonna go to bed or eight o'clock after dinner or something that I if I start adding all this this conglomeration of carbs, all it really does even if you handle it really, really well, like just even if you're just sort of like a ninja with your, with your balls there, then it's still you still have the opportunity for like, a crazy low later or high that creeps up on you or something like that are just missing and now she's sleeping and your glasses. Interesting. Okay, so, okay, so you give her something to eat your you allow her to eat something that won't mess up your night or your day. And so it's like, it's funny, because I've had those thoughts where Arden's being like, you know, I'm gonna get a snack and you're like, looking across the room. Like, he can hear that he can hear your brain say no, not that please not that. Like, you know, that never say anything because you don't want to, like, you don't want to, you know, I don't want to give her a weird feeling about food and at the same time, like I can tell by what she grabs what time I'm going to go to sleep. Right. And so it's just fascinating. Okay, so, so you guys hang she whenever she crashes? And then do you like do you just stay around the house? Or do you?
Justin Robbins 18:49
I I work also but a lot. I don't work nearly as much as her I only work part time. And so I'm usually around a lot more. And also my job doesn't require me to be there some really early hours I work retail. So I sometimes go in like mid afternoon. So she's she I can usually tell by like the path on Hmm, I mean, shoot, she can't manage it herself.
Scott Benner 19:19
Yeah, I don't think we I guess we should have said that. It Mandy's not like I don't know what to do. She right? You just you're just trying to lighten her load because her schedule is so strange and exactly
Justin Robbins 19:30
right. And she works 12 hour shifts. So her quality of sleep you know needs to try to be somewhat decent because not like me where you know if I go into work and I'm a little tired maybe a printer doesn't get sold but her you know lives are on the line.
Scott Benner 19:46
Yeah, you know it occurs to me too. She works at 12 gets a bad night's sleep because of her blood sugar's still got to go back and work at 12 again. Right now she's 36 hours 24 of them are on her feet working and maybe she Didn't get quality sleep in between that's, and that's a reality. You know, I mean, everyone listening, everyone listening knows that your sleep can get messed up by diabetes. And sometimes you can have like, you can look, as you're going into the evening and think this is going to be the night this is going to work. And then and then it doesn't. And sometimes it just does out of nowhere and you can't plan. It's not like you can say I really have to sleep Thursday. So I'll get straight. So that works. You just do your best. And if it works out, it works out.
Unknown Speaker 20:29
Exactly.
Scott Benner 20:29
So. Okay, so in your note, you said that you feel like listening to the podcast has helped her with with like some of her goals. Oh, absolutely. Diabetes, diabetes wise. So I'd like to, I'd like to get you to tell me about before before you find the podcast. And you know, and get to listen to people telling their stories and everything. What was an average of what was happening, like snacks like meals, like how did it go, usually, I want you to promise me right now you're not going to wait any longer. You're not going to say to yourself, I'll do it next week or when it gets warm out. Or as soon as I get done this project that worked. Just do it right now. Go to dexcom.com Ford slash juice box, click on the link in your show notes, go to Juicebox podcast.com. Click on the link there. I don't care where you do it from. But today's the day you're going to find out more about the Dexcom g five continuous glucose monitor. You're listening to people every week on this podcast talk about the success. And the ease that they're living with do in a huge part, to the information that they receive back from their continuous glucose monitor made by Dexcom. I'm looking at ardens blood sugar right now I just brought it up in front of me on my iPhone. It's 9494 and steady, it's not dropping, it's not rising. She's in a great situation for an hour away from her Pre-Bolus. For her launch, that Pre-Bolus is going to be beautiful. Because of the information I'm getting back from the Dexcom, she's not going to spike after sheets. And she's not going to get low later, she'll spend the rest of day at school with a blood sugar right around here. And then she's gonna get right on a bus and go play softball afterwards. That's the beauty of the dexcom share. Even when I can't be with Arden, I can see her blood sugar. Just say this bowl is for lunch doesn't go exactly the way I expected her blood sugar starts to rise, we can address it, it starts the fall, we can address it, she may need more carbs or more insulin, but we're going to know right away because I'm going to be able to see her blood sugar and which way it's trending. And we can act quickly make a decision. Stay off that diabetes rollercoaster tried today, click on the link in your show notes or go to dexcom.com forward slash juicebox. I'd like to get you to tell me about before you find the podcast and you know, and get to listen to people telling their stories and everything. What was an average of what was happening.
Justin Robbins 22:54
So let me just start off by saying I feel at this, now that I know what I know. I feel kind of ashamed that we allowed what hap was happening to go on for so long. So prior to listening to your podcast, we and it was I won't say it's anybody's fault. We just kind of I don't know, I didn't quite understand the the principles out. So we've had the Dexcom for a while. And we had her parameters that just just ridiculously high. Okay. And it was for the reason of she didn't want to hear the beeps while she slept. Right. And also until listening to your podcast. I always had a death fear of her being low. Like everything I would read all these articles, you know, all well they went low during their sleep and just never woke up. And you know it because bad news travels fast they there was like you always read those articles, but you don't read anything about like the nasty side effects of having high blood sugar all the time.
Scott Benner 24:09
Hard to talk about. Yeah, if people people are not excited to talk about problems that can come up later.
Justin Robbins 24:15
Right. So we always erred on the side of just letting her be high. Because she can handle being high, a lot better than she can handle being low. When she started when she starts to get around. Low, you know, just even like the mid to low 80s. Like she'll say something to me, right where she can ride 100 or 250 all day and never say a word. And that's and that's awful, but we had her parameters set it where the it wouldn't even alarm at a high until like 240 and that was just for her sleeping. You know, like I knew she had to eat so I know she'd go up a little bit and And, and it even got to the point where like when before I would leave for work if, if she was like, you know, I kind of have like a rule of thumb in my head that if she was 180 or a little below, I just leave her like, I wouldn't give her any insulin, because I know that with her bazel she would to drop a little bit and I would be afraid. Put her towards closer to, you know, 120 because I didn't want her to dip low because she would immediately die. And that's kind of like the mind. Yeah, yeah, so
Scott Benner 25:37
blood sugar's gonna hit 70. And then I'm gonna be out looking for another dating situation.
Justin Robbins 25:43
Well, we had a scary incident one time after she had a surgery. And she wasn't able to really eat very much. And she was very weak afterwards. And I was that he told me to go to work. I had already been monitoring her for several days. But then she her blood sugar got low, she didn't really feel it because of all the drugs in her. And then she just kind of just kind of went down. And like my phone went off. Because I get alerts about her from her decks calm right with the shin had had her at like, 45, right. And she wasn't picking up the phone. And it just totally freaked me out. I jumped in my truck and left Blackmer fell through the parking lot as I got home, like a chase scene from a movie. And ever since then, like it just scared me. So I never I never would be bold with insulin, I would always let her be high. And so her a onesies were reflecting that
Scott Benner 26:47
it's funny too, because the the fear of So, so real, because what you're describing is a unique situation that doesn't exist in most of your day. She had had a surgery, she was medicated, you know, like, right, all the stuffs, but you see this 145 blood sugar that then causes you to, you know, for the rest of the year, except like 180 or 250 or something like that, because I don't want to be 45 again, right? It is. It's interesting why I want to I just want to stop you for a split second and go back and say I heard in your voice. The when you said ashamed, you know, you said I feel ashamed that I know, you know that you shouldn't be right, like, right, yeah. Like you don't have the, if you didn't have the tools? How would you know, you know, and then you, you lay the fear on top of it, then you'll lay the reality that you know, someone has passed away on top of it. And you know, and it's someone you love. And it's hard to you, it's hard to make that decision. Like I don't want to, I don't want to trade, you know, today for tomorrow, but I guess I'm going to and and that's that's not an easy decision to make, you know, that the end. And at the same time. It's the decision that a lot of people end up making. And the thing that broke my heart and caused me to want to do this. Because when you said you know she was at 180, I wouldn't correct like in my mind, I think while there's 100 points to take off there. You know, and even when I see my daughter, like that's why our hearts are high thresholds at 130. And as soon as Arden gets some more body mass, I'm gonna move with the 120 you know, as soon as I can, but when I see 130 I'm like, okay, insulin is not a lot, you know what I mean? But it's gonna be some, and then we take care of it. You know, like later this morning is a good example. Like Arden gets up and she's just stuck at 140. I'm telling you, Justin stuck like that, you know, I got up as I go, okay, you know, give her some insulin, doesn't move, get her downstairs, give her some insulin doesn't move center school. She's 145 on the Dexcom. And I'm like, you have to test them if something's wrong. Like I thought for sure. I was pretty sure she was gonna test and be way higher than that, like the CGM was off or something. Because usually when you get that really steady number that you can apply, it's wrong, right? But But instead, she tested in, she was 141. I'm like, Oh, this is really just a blood sugar that stuck. So we cranked up her basal rate for a half an hour. And now she's 102. But it's gonna be it's 15 minutes until I have to Pre-Bolus for her lunch and another 20 minutes after that before she's eating. So I just texted her while you and I were talking like 10 minutes ago, and we decreased her basal rate by 40% for an hour. Because now I'm hoping to catch it right where it's at right now one or two and just let it sit there. I don't want it to get much lower so that I can Pre-Bolus the way I want to. Right. But no one says that stuff to you. When you're diagnosed, you know, Mandy's being told Hey, you're gonna die. You know so but but no one no one's telling you that no one explains how the insulin works. No one understands, you know, I was watching someone online last night speak about, you know, this poor kids graph is just all over the place. And I reached out and I said, Look, you don't know me, but if you call me we can fix this in 10 minutes. And I genuinely mean that, like 10 minutes of talking and we could fix this. And I just I don't know why I mean, everybody's not my problem, you know, they mean like, but it just this one got me it just really kind of broke my heart. And it's, it's just, it's crazy to think that this person's having this stress, this anxiety and this and this shame that you're talking about all these other terrible things. Because someone didn't sit with them for 10 minutes and explain, hey, this is a tug of war between the insulin and the carbs. And you're just trying to keep either side from winning. And here's how that works. And here's how you do that. And again, it's just it's such a, it's it, I get angry about it that right? That that's not the advice you get coming out the door that everybody gets, you know, but so so I mean, talk about that a little bit. So what are you doing, like she's eating and you're probably not using enough insulin at first, and she spiking, but it's high, and it's not so high that you're like, Okay, so you sort of leave it is that was that sort of the
Justin Robbins 31:12
day? Yeah, I mean, basically, if she was, if she was under 200, I'd leave alone, because I kind of went by, not by what she should be at, but how she felt and I knew that if she was under 200, that she would feel fine. And, and so I just kind of, you know, accepted that. And, and, and then everything would be relatively fine, except when we would have our endo appointment, and I would go with her. And you know, we'd get the you know, shame shame. And by the way, we recently got a new endo, because our previous one, every time we would go in, they would just constantly mess with things like we had an endocrinologist who you would see the endo themselves about once a year. And then the rest of time you would see a nurse practitioner, right. And they didn't agree with each other. And they didn't. And they didn't communicate with each other either. So when we would see one, they would put all these weird settings and her pump. And then when she would see the other they would say, Oh, no, that's all wrong and change it all back.
Scott Benner 32:29
Yeah. To try this. Try this. No, right. Nobody knows why or what they're doing or now.
Justin Robbins 32:34
It's all just
Scott Benner 32:36
well intended. bad advice. Right? Yeah,
Justin Robbins 32:40
one of the tricks, one of the truest thing that I ever that really grabbed me from your podcast was by living with diabetes, you know more about diabetes than anyone you will meet. Trying to help you with it doesn't have
Scott Benner 32:58
it. And then there's the frustration. So you go in, you know what's going wrong. You don't have the tools to fix it. The person who probably has the tools to fix it doesn't know what's going wrong. And so they do the wrong thing. And you sit there frustrated, but there's this there's this impediment to stopping it. Like that process goes on and it's everyone's guilty of it at some point, right? Like, you somebody says something to you, you think that's not right. But you know what, they're in a position of power and I got to go home and do the laundry. So they said okay, then it's okay. Doesn't make it okay. You know what I mean? People tell you things all day long that they might be wrong about and and sometimes you're not in the position to know the difference. And sometimes you are but in this very specific situation, you're in the position to know. But a lot of people don't feel in the position to act. And and that's something I used to talk about a lot more that idea that people are you're raised not to question doctors and police officers and teachers are certain people in positions of power that you just assume know more about these things than you do. Or you know, or have this power over you that you can't break free of but that's not true. Except for the police thing. Police says Raise your hands. Justin, I always want to put your hands on other than that, you know it just and that's the tough part you hear people talking about on here all the time. I knew it was wrong. I couldn't speak up. And right and I'm hoping that everyone listening to this when they know something's wrong speaks up. It doesn't mean you have to get into an argument or fight doesn't have to be uncomfortable. You just have to say Listen, my blood sugar is 200 and I hear you telling me that's okay. But it's not okay because here's here you are sitting across from me you don't have diabetes, your blood sugar's probably 80 you know, right 90 or something like that right now as you're sitting here. So you're gonna really tell me that mind being double plus what what the normal average is that that's okay for me. And in the end, and I know I say it a lot but that's don't die today. Advice. That's not what live healthy advice, right? You know you want to live as long and as well as you can not just today, you know that's it breaks my heart. So in the last ad, when I spoke about Dexcom I told Jordan's blood sugar was 94 inch steady. Now it's about 10 minutes later, I'm still editing the podcast and her blood sugar is 90. Still very steady. But it occurred to me You don't know how I got to that? Well, I woke up this morning and Arden's blood sugar was 130 around 6am. So I gave her a small bolus, and I adjusted her bazel. I did I think that 20% Temp Basal increase and a small Bolus, which got her blood sugar down to about 110 she was leaving for school. A few moments after Arden arrived at school, her blood sugar started to drift up, we did another Temp Basal increase, and another small bump of insulin that was handled through a text message or Arden that on her end just pushed a couple of buttons on her on the pod PDM. And it was taken care of. Now we're talking about two increases of basal insulin and two small boluses. Now if you were on injections, first of all, you're not in control of your basal insulin. And secondly, you probably wouldn't give two small injections in the course of an hour and a half. To make this small bump, you might have looked at that 130 blood sugar. And you might have said it'll be okay. That maybe you get to school when that blood sugar goes from 130 to 140. And you still say that not worth injecting. But right now, Arden's blood sugar's 90, that's 50 points better than 140, just with a little bumping and nudging of insulin. And this is all done with a tubeless insulin pump. So it's as discreet as Arden wants it to be, she doesn't want anybody to know she's wearing insulin pump, she doesn't have to let them know, there's no tubing, there's no cable, she's not attached to something, she's not wearing something around her waist. It is magical. Now I want you to consider getting a free, no obligation demo of the Omni pod, they'll actually send you out a pod that you can take a look at and actually wear, all you have to do is click on the link in your show notes. Or go to my on the pod.com forward slash juicebox. And that's the tough part you hear people talking about on here all the time. I knew it was wrong. I couldn't speak up.
Justin Robbins 37:14
He was the appointments, you know, we would go in and they would they would tell us this, this magical number this, this a one c number. Yeah. And they would say, well, that's not good. And I'd say Oh, okay, well, how can make it better? We need to manage better. Great,
Scott Benner 37:33
not advice. Advice.
Justin Robbins 37:35
Right. So how would I how do I manage better? And also, what does this number consist of? Well, it's the scale. Yeah. Yeah, I got that. So how do I help decrease it because you say this higher number, which, by the way, it was it was 8.2. And
Scott Benner 37:58
we just, that's one of those agencies, by the way. And please, no one get offended. But that's one of those a one sees that you hear that we've been tossed into believing that one's fine. Like, it's not a problem. And listen, when you're first diagnosed, it's not a problem. But some point you have to, you know, be mean have to you should try to figure out how to how to cut the out. I hope this is clear to everyone listening, anyone sees not the end all be all of everything. It's just a it's a measurement. But you know, forget anyone see for a second talk about your average blood sugar, if your average blood sugar's 90, most of the time. Who cares what your a one C as long as you don't have crazy lows, that are persistent, or, or that are frequent. And you're not banging up and down, that roller coaster is bad for you, it's hard on your system to go from 80 to 300, and sit there for two hours, then go back 200 and sit there for an hour and then go back to 80. Then Friday and then but that is hard on you. You know the best thing that you if you had an eight, a one C, but your blood sugar was always 140 or whatever it equates to. And I'm sorry to all the people in Canada who are frantically I got a somebody sent me an email last night. I love the I love the podcast, I'm from Canada, but I'm always watched and listened with a calculator because I never know what the numbers mean. That's hilarious. I'm sorry. But, but but you know, if you're nice and steady, and you have an eight, believe it or not, that's much healthier for you than banging up and down and having an eight,
Justin Robbins 39:25
right, which is exactly what our new window was telling us. You know, making sure that you're steady all the time. He said, You know, I'm not going to put as much emphasis on this number because, you know, you could sit low all the time and achieve a low number and that's, that's not not at all what I want.
Scott Benner 39:45
I I'm also afraid that a lot of endos think that if you have a really great a one c it's because you're low and it's not because you figured out how to keep your blood sugar at 90 right but what I always maintain and what you You're probably learning now is and it's not a bad idea if you can find a way to stay steady at 150 Mm hmm. Then you just take everything that you learned and just got I know this sounds so overly simplified for people who are struggling with it, but you just take what all you've learned, and you just move it down to 90. And that's not hard to do. It's just it's the idea of you don't let the spike happen. If you don't want to spike happen, then you never get to 151 50 in my house is Jesus we've messed up. And, and in a lot of people's homes, 150 to them is like, whoo, this is working, you know, and, and so, because people say, Well, well, when I keep it at 100, I get low later. But we don't, because our insolence timed out better. And that's the real goal Justin is is that the timing is I find myself walking around my house thinking of different ways to say things on the podcast sometimes happened to me what happened to me last night, but I still think that one of the best ways to think about it is it's a tug of war. There's a flag in the middle of the rope, the carbs are on one side, the insolence on the other side, you can't let someone pull First, if they pull first, they're gonna have an unfair advantage for the rest of the fight, you need both the pole at the same time, you need him to both Stop pulling at the same time and then the robe re ever moves. It's all about the timing and the amount of the insulin. it's it's it's understanding how the insulin works. And not being scared to use it when you need to use it. You know, is is pretty much the entirety of the thing. Eat right now. And of course, not part of the advertising. But the Dexcom the CGM makes that much easier. You know, there's Yes, there's no doubt about that.
Justin Robbins 41:41
Oh, the CGM is the is by far my favorite thing we've ever purchased for diabetes. I mean, it's just it's been such a life changer. But real quick back to the a one say. And this is and this was actually before we even started going into this new info, so I'm not going to give them the credit for it. We, we started, we found your podcast, started listening to it. And it just, it just helped make things click with you know, stop worrying so much about you know, going low, you know, you could always just eat something real quick and bring it right back up and be you know, more a little bit more bold with insulin. And also just like very impressive, you know, your your thresholds with what you consider high. So we started knocking her her dexcom down. You know, we started going down like every, every week, we would go down 10 more points to what what was high where I told you originally it was like 220 I think we're down to currently like 170. And we're going to continue to keep going down down and down and started making her live within these, you know, because I just knew that if I if I could make her sit at 180 all day, I can make her sit at one 150 all day, if I can make her sit at 150 all day, I can make her sit at 130 all day, and so on and so forth. And on the last appointment we just went to we went from an 8.2 to a 7.3. That's a wonderful decrease. Congratulations.
Scott Benner 43:19
Very, very, very exciting.
Unknown Speaker 43:22
That's amazing.
Scott Benner 43:22
I loved hearing you talk about it just that. I don't let all you people make a podcast, I get stopped doing this because that's spectacular. Really. Congratulations. First of all, tell me in your, in your mind the difference between steady blood sugar at 180 and a steady blood sugar at 120s. What is the difference? Is there a difference?
Justin Robbins 43:40
There is no difference. It's your fear. Right? Right. Right. It's letting go of, of that stigma that the insulin will kill you, you know, because that's, that's what I was told right at the beginning. You know if you give it too much to those who killer, right? Oh, boy.
Scott Benner 43:57
Yeah, and by the way, not not true. just not a good way to live your whole life. Right that you can't you can't have this thing. That is pretty much the only thing keeping you alive. And then have somebody tell you to be really scared of it all the time. Right? Yeah, to find a there's a balance, you know, there's just a happy understanding it really is. It really is the you know, you have to respect fire, but you can't fear it. Like it really it really is that ideas you know, you need this thing it has to work. You have to make this work and just using enough so you don't end up in decay every day.
Unknown Speaker 44:35
Mm hmm.
Scott Benner 44:36
That's not okay for your health. Now, if you're overwhelmed by this fear, and you can't break out of it, you are probably going to have long term complications. And the higher your blood sugar stays, the more consistently it stays at high The sooner those complications are going to arise if they're going to arise, right. You don't want to be the person in my opinion. I'll tell you a story that My dad, my dad, I'm adopted. So my my, my adopted father, but I've never thought of him as anything but my dad, even though he left my mom when I was 13, and I really didn't grow up with him, I still think of him as my dad when I'm thinking back on him, right. So he grew up on a farm. He said that they started smoking, just stuff they found in the field. And I don't mean like, you know, weed I just mean like cat pails, they'd wrap them up and so they were looking to smoke or something my father was, you know, he would be in his 80s now if he was if he was still alive, and so he started smoking stuff right away. And then he started smoking and for smokers or people with smoke in the past I'm telling you, my dad smoked Chesterfield, Kings unfiltered, like you know, and if he couldn't find a Chesterfield, Katie I smoked a Pall Mall unfiltered, my dad was smoking the tobacco that fell on the floor of the cigarette factory like this with some strong crazy cigarettes. And that's back when nobody was regulated, darn thing. And so he smoked and smoked, and smoked and smoked, and my dad smoked two and three packs of cigarettes a day. And so he liked one with the other one, my dad would smoke coming out of the shower, I'm going to die one day from the smoking my dad's probably lucky left, my mom might have saved my life. And so I'm talking about a lot of smoke, okay. never had any health issues from it. Never in his 30s in his 40s in his 50s, never, ever, ever. And then one day, my dad says, you know, he's got congestive heart failure. Well, that's from the smoke, you know, but I'm going to talk to my dad up until the day someone told him he had congestive heart failure, he would have told you, he was the lucky one, he was the special guy who smoking didn't affect because that's what he thought that was the that was what the beauty of being human allowed my dad to think about cigarettes, it's not going to be me. I'm not the one I'm better, stronger, faster, different. You know, we all think we're different. We're not all really that different. You know, so you can't sit here with diabetes today at 25 and say to yourself, I'm just going to leave my blood sugar at 200 all the time, because it's safe, and I won't die today. Because this stuff will it's just scientifically it's going to catch up to you at some point. And and, and not only that, forget that the scary stuff. Your altered when your blood sugar is not in range, you know, you're you're shorter tempered maybe or, you know, easily confused or like there's a bazillion things they could do. And I know you could say, well, that happens when I'm low too. But you can fix a low quickly. You can't face a high quickly.
Justin Robbins 47:38
He? Oh, that's I know exactly what you mean. I can it's it's funny, and she'll she'll chuckle when she hears this but i can i can tell a huge difference in her irritability with now that she's not as high all the time. You know, I don't I don't upset her as easily or she doesn't, doesn't get aggravated by such such small, little consequential things. Right. When she's not high all the time. And I I can't there's there's no way that those two things weren't correlating. Because, you know, sometimes you just be mad that the, the the battery's worse, or old and the remote. Yeah. Well, Mandy, let
Scott Benner 48:21
me just say, if you're listening, I don't agree with Justin at all. I think you're perfect. This guy's obviously a problem. And so No, I do know exactly what you mean. It's, and it's not your fault. Like if your burgers 200. And you're snippy, it's not your fault, your this is not the you know, it's just like if you think back the old cars, and if you make your carburetor too rich, the motors not supposed to run with that much gas coming through. And so it chugs it chops, and because it costs because it's not balanced, right? And just because your body gets accustomed to it, you don't feel that your high anymore, it doesn't mean that the bad parts of being high aren't still happening internally. And I don't know that enough people even understand that. Right? You know, like it's, and then when you stop and really look at what I was able to figure out and what you've been able to figure out and other people too, I got some great notes this morning from people that are really fantastic. But if you can keep your blood sugar steady, anywhere, you can keep it steady anywhere. And that and then you get into that very childish thing that I really genuinely believe with diabetes is that you sort of get what you expect. Right? You know, if you try if you expect 100, I think you can get 100 if you want to understand the balancing of the timing of the insulin, you can get 100 without being low later. Once you are you know once you realize you might get low once this week, and you just say to yourself, I'll take care of it. Right everything gets better. Exactly, you know, so
Justin Robbins 49:51
it's a it's kind of funny, you bring up the whole car carburetor thing because that's actually what I what I do as a hobby is rebuild old cars and So that one, we were talking earlier about what got you interested in her diabetes, she used to have a, an old animist pump, that she had to unscrew the top, and pull out the cartridge and reload the cartridge. And after I watched her do it, I thought I could do this better. And it got to the point where I could actually change her sight on her reload the Animus. And I mean, like, it was, like, from a movie with a gun scene, you know, where like, he can disassemble and reassemble it blindfolded. And, and it was my involvement with that pump that I think really kind of showed her that, wow, this this guy's really, you know, he's really, really into this.
Scott Benner 50:52
And since he can't seem to keep batteries in the remote correctly, we're gonna have to let them do something. So
Unknown Speaker 50:56
right. Yeah, exactly. So
Scott Benner 50:58
you're pretty, you're pretty much into this right now this process of moving her agency down and getting more getting bolder and things like that. Do you see? Is it possible that once the up and down stops, this is going to be interesting for you, Justin, once the you stop chasing blood sugars, and she's stable more frequently. It's gonna require less of your intervention. Right? Well, you lose a little bit of who you are. Do you think or do you think you are? Are there things in your mind that you think Justin would like to get back to some of this stuff that he doesn't do any more because of this? Because I feel like I can't wait to not be as involved in anything but yeah, how you feel?
Justin Robbins 51:40
I mean, yeah, I know I've always kind of been a I've always been independent and did my own thing, regardless, but she's always been my number one priority. Even when I go to work if I see like her blood sugar kind of creeping up. You know, I always wish there was a way I could like bolus her from my phone without her even though
Scott Benner 52:02
remaining slots just
Justin Robbins 52:04
but like I'll I hate to call her and wake her up. But if I see her blood sugar creeping up, I will call her and wake her up. So yeah, it would be it would be nice to not be as I mean, as much of a as a godsend as the Dexcom is, it would be nice to not look to look down at my phone every 15 seconds, I probably look like a teenage girl at work, where I've just like, checking my phone, like mid conversation. I will I will, like look at my phone people like really? Like, I'm not checking for text messages. You know, like, well, this is important.
Scott Benner 52:41
I believe that'll go away for you as as things get better, because I say it on here all the time. I 100% don't believe that people leave me I never looked at my phone. I am if I if if I'm not being told that Arden's blood sugar's outside of a 70 and 130 range. I don't look I when she's at school, I'll look maybe about 45 minutes before she's supposed to eat to see if I have to do any like little bump around with food or insulin to get ready for the Pre-Bolus. But other than that, I never ever ever look at the CGM. So and I think that that will come eventually, because you'll just trust it. You'll just trust that if it's in this range. It's not the CGM. Like take the data aside, right? After you go through these processes enough and enough enough times, you will get what you expect. And you will expect the right thing it won't be guessing anymore. It'll be I know where your blood sugar is. Yeah, I was just I was I think I was doing recording one of these the other day. And I said to a person so I, you know, as we got on, I'm like, I just did this and this and this. And by the time you and I get off her blood sugar is gonna be and I picked the number. And he never looked at the CGM again. And when we got off the podcast, that person said, oh, what's Arden's blood sugar. And I was off by two points. Two, and I was moving a higher blood sugar down, and I still knew where it was gonna go. And that's not I want to be completely careful, everybody listening, that's not me, I'm not special. I don't know, something you don't know, I've just been through it enough times. That I know if we take a BNC and put them together, it's going to equal 102 blood sugar. So you'll get to that point where you'll just trust so completely, that what's going to happen is going to happen, that it won't even occur to you to check on it anymore. And then if it doesn't happen for some reason, something will beep and vibrate and the next thing you know we'll take care of it well before it's an issue. So right. So I mean the technology is I really want to say this Justin and please everyone listen for a second. I do take ads on the podcast for for technology that I am 100,000,000% sure works. And then 100,000,000% short is the key to how I can't make this stuff happen. I would be saying this if they didn't advertise on the podcast. But technology is been the way that I figured out how to do this. And I'll you'll hear from people say I inject and I have a six a one C, and I'll be like, that's great. And that is really wonderful. But you do not have the empirical data from the last 30 days to see how you got to that sex. Right? You'll never really know if your blood sugar was 60. Overnight, every night this week, you know, and and this technology allows this to be easier, and it allows it to be more precise, and up to me and allow us to be much smaller part of your actual consciousness. So I think you get to that.
Justin Robbins 55:41
Well, and also, I mean, before we were on a CGM, or array one sees where we're lower because they getting as much data, you know, the only data they were getting for us from what they could download from our pump, right? And what you know, when she would test, so, you know, with that with that record, and they're only getting, you know, however many times during the day, versus, you know, every couple of minutes throughout the entire day,
Scott Benner 56:11
absolutely. Listen, I could Arden's blood sugar is not always 92 Do you know what I mean? But I could test her blood sugar every day at certain times, and make her blood sugar readings look like her blood sugar's always at one spot, I would know when to test to keep that number down. And sometimes, it's because of where people tell you to test the doctors like that, you know, test three hours after your appeal. Which is to me insane. But if you're a person who three hours after your meal has a good blood sugar, and you always test it like that, but your blood sugar went up to 300 for a while. Right? Well, that's not quality. And some people might say, well, but it ended up at 90. But But I'm telling you, there's a way to stay at 90 without ever going to 300 you just have to reallocate when and where the and how much the insulin this. But it's it's not a hard concept once you see it, but it is hard to get over that idea of like, well, if I did this, and she went to 300, but she came back to 90, then then what else would I do? Because if I used more insulin to stop the 300, then I go past 90 except it's not about more insulin, it actually could be less insulin just has to be timed better. It could be Pre-Bolus. It could be you know, it could be an extended bit mom bolus, it could be extra bazel, less bazel. At certain points. It's, you know, and even that is not nearly as and I'm going to ask you Is it as much work as you thought it was going to be when you heard me say it?
Justin Robbins 57:38
No, no, it's not. Right.
Scott Benner 57:40
It's more work to fight with the highest right?
Justin Robbins 57:42
Oh, definitely. Yeah, finding a high is is the worst. And, and and also, I mean, your your talks on Pre-Bolus. before meals have have greatly greatly helped out with that. We we always Bolus now. Oh,
Scott Benner 58:01
I'm touched. That's excellent. And listen to I just interviewed a guy from novo Todd Hobbs about the the new faster acting in insulin they have come I think they're calling it fast or something or fast, but I'm not sure. But it's very possible that the need for as much of a Pre-Bolus or any Pre-Bolus at all, I'm going to try it when it comes, you know, when it's available in the US. We're going to get it we're going to try it. And and maybe that takes that away a little bit. Maybe doesn't I don't know, but we're gonna give it a shot. But in the meantime, it doesn't matter really. Because right faster actor, a fast acting insulin that works faster than the instant I have now. I'm still going to need to know how to time it, how to stretch it out how to put it in the right places. So it's not going to change anything other than maybe the timing, the timing of it. Yeah. Right. So. But if the timing of it means as I'm sitting down to eat, there's no doubt that thinking about Pre-Bolus and socks, like you don't, right, you don't want to do that, you know, so maybe that'll take that away. Maybe it won't, we're gonna find out, I guess. Arden zendo already said they'd write the script for it. So we're gonna try it as soon as it's available. Just then we are, as I promised, coming up on an hour flew by because you were fantastic. And I just want to make sure that we hit the there's not something stuck in your head that like I wanted to say this, and I didn't say it.
Justin Robbins 59:26
Now, we pretty much covered everything. I just, you know, I just anyone out there listening. And also I work with a couple of diabetics who I've turned on to your podcast. And one guy the other day told me his day when he was 10. And I said, Here, write this down for you. Because it's that important that you you remember to listen to this and go talk to a doctor. Because, you know, I want you I want you to experience the same things we have but anyone listening? Just? It's it's great advice. I mean, we we've dropped, you know, you know, to 7.3 from 8.2, in a matter of three months, just becoming more more bold with insulin. I mean, it's it really is that that simple, just stop overthinking it so much. That's pretty much it.
Scott Benner 1:00:25
It's interesting as simple. The advice is, and of course, Justin, nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making changes to your health care plan. But at the same time, I appreciate what you're saying very much. And, and I'm going to tell you right now, it is much simpler than it seems. And it's, it's tough, because when you're in the throes of it, nothing seems more difficult. Yeah. Right. But then you get the right tools, and then you realize it's not so bad, right? All right job, right, Rachel? What's the saying, I forget, right? All right job. You can't, you can't wallpaper with a hammer. So, you know, once you've got the right stuff, then you're then you're onto it. It's it's it still sucks. It's still diabetes, but it's way easier. And I appreciate you sharing it next time, don't write it down, just take his phone, and subscribe. I appreciate anyone, by the way, listening should just grab other people's phones and subscribe to the podcast with it. I would greatly appreciate this. Justin, you were really delightful. And I have to say that, um, what you're doing is something that I'm thinking a lot of parents of kids with type one right now are listening to and you're mirroring their experience, but with an adult. And they know how much effort it is to love and care about somebody that that much. And I also want to say to Mandy that I think it's really kind of remarkable that she's able to be that free and open with diabetes in a way that I don't think a lot of people could be, you know, and it's leading to good things for which is, I think a lesson inside of the inside of the store to be perfectly honest.
Justin Robbins 1:02:02
Just one less thing about the openness we we actually both have matching, blue, blue ribbon tattoos with a little blood drop on them for for diabetes. So that always always grabs people attention. And you always, you know, we're always very open to explaining how what a big part of it is for our life. And, you know, she at by being a nurse, she's a natural caregiver, so she always wants to help others. Yeah, she's definitely she definitely wanted her her story shared as well.
Scott Benner 1:02:32
That's cool. But the advocacy part is so important just to tell other people about it. And by the way, by the time this comes out, it'll probably be long passed, but I'm gonna see samples of the bold with insulin t shirts I'm having made. So this week, so they'll be out in a week or so I'm hoping maybe maybe two weeks, I'll be able to start just getting them to people selling them and getting other people but I couldn't believe I made this little like, I don't need this little graphic. And somebody was like, I make a great t shirt as you think so and then like 100 people like Yeah, sounds like that sounds like I should make t shirts. So uh, so we're gonna, we're gonna do it. But to figure out the logistics of it later, just because I'm not a mailing house. So I'm not 100% sure how to do all this, but I'm gonna figure it out. And and get one that anybody who wants them, but I think you'll think they're pretty cool when you say, um, so
Unknown Speaker 1:03:18
yeah, absolutely.
Scott Benner 1:03:19
I mean, I really, I really do appreciate you being interested in coming on and, and, and taking our time and doing this. And please give me a hug for me and say hi to her.
Justin Robbins 1:03:28
I will and I really appreciate you having me on as well.
Scott Benner 1:03:30
Now, please. That's, that's what this is. And I just I just sent a note to somebody the other day who's like, the podcast did this for me this room in my talk back and forth for a minute. The last thing I said to him was, you know, one day, you should come tell your story, because your story will be that valuable to somebody else. And I think nobody believes that. But it's, it's 100% true. It's you guys are driving the podcast. It's not me. Like I've never Besides, you know, companies, you know, like, I think I'm doing the Omni pod CEO thing. She she and I are talking next week, besides companies and it's like sometimes famous people and stuff like that. Everyone you hear on this podcast reaches out to me, I don't reach out to them. So it's it You guys are perpetuating your own care in a really interesting way. You know, all I do is answer the email and say that'd be great. And then we do what you and I just did. I have almost the smallest partners.
Justin Robbins 1:04:25
We probably mentioned your podcast probably several dozen people about two months ago, maybe a month and a half ago we were at a diabetes conference in Orlando. And there was a lot of newly diagnosed diabetics there and you know we we kind of hinted around with well you know, it's important to get a good endo it's important to you know, be good with insulin and yeah, pumps important everything, but you're going to want to listen to this guy because he just explained That better. Oh,
Scott Benner 1:05:01
I appreciate it now. That is my only superpower I explained better. Can you imagine in the Justice League that's my power.
Justin Robbins 1:05:12
My people getting into a lot of the trouble that they started out in.
Scott Benner 1:05:21
Thanks so much, Justin for coming on and sharing your perspective. And thank you Mandy, for allowing Justin to talk about your diabetes on the podcast. Thank you also to Dexcom and on the pod for sponsoring the show links in your show notes links at Juicebox podcast.com. Or you type in my omnipod.com forward slash juicebox word dexcom.com. forward slash juicebox. Now the music's gonna stop, but I'm gonna keep talking. I really want to thank you guys again for sharing the podcast. Also, the ratings or reviews on iTunes continue to pile up, which I really appreciate but the sharing is what spreads it out. And I thought you might be interested to know where the podcast was heard just in the last couple of months. So I'm gonna list off some countries US and Canada, United Kingdom, Australia, Spain, Ireland, Sweden, Germany, Switzerland, Portugal, Norway, France, the Netherlands, China, Japan, the United Arab Emirates, Denmark, Iran, South Africa, Australia, New Zealand, India, Singapore, Mexico, Lebanon, the Ukraine, Saudi Arabia, Italy, Greece, Argentina, Kuwait, Israel, Indonesia, Belgium, Egypt, Russia, Peru, Aruba, Romania, Bangladesh, the Philippines, Pakistan, Turkey, Puerto Rico, Korea, Costa Rica, Poland, Guatemala, Croatia, the Cayman Islands, Bulgaria, Europe, the Czech Republic, Kenya, Qatar, the Dominican Republic, Serbia, Vietnam, Belarus, Panama, Zimbabwe, Iceland, Slovenia, Georgia, Slovakia, Armenia, Gibraltar, Finland and Oman. So the next time you feel like you're alone, just remember that there are people all over this planet listening to this podcast just like you living with type one diabetes.
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