#151 Complications are Complicated
Scott Benner
Nicole has multiple serious complications stemming from T1D...
Nicole has multiple serious complications from her life with type 1 diabetes. In this episode she lays it all out so that you can understand the real world impact of unchecked type 1.
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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
Hey everyone, welcome to Episode 151 of the Juicebox Podcast. I'm a little sick right now, so my voice might get funny, but don't worry, I was not sick when I recorded this episode. This episode of the podcast is sponsored by Dexcom. And on the pod you can go to dexcom.com forward slash Juicebox Podcast My voice is what are sorry about that. This is gonna be tough. Or my omnipod.com forward slash shoes box to learn more about both of these great products. They'll also be ads in the middle of the show somewhere all sound really funny. A quick heads up if you normally listen with a child, this might be one of the episodes you want to listen to by yourself before deciding if it's appropriate for them. Once again, I want to apologize about my voice that gets tired as I'm talking. Please listen through this episode very thoroughly. Nicole is going to give a masterclass here in being honest, and I don't think it's something you want to miss. diagnosed at 17 years old, she's 34. Now, she did not by her own account, do a very good job of taking care of her diabetes for a very long time to something that she regrets. But now she's trying to share her story. So you can completely understand what it means to your health. When your life takes this path, Nicole has multiple serious complications. She's gonna walk you through her life so that you understand how it happened. And I just want to tell her right now, Nicole, if you're listening, I'm just incredibly grateful that you did this. Thank you. Let's get to this. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being boiled with insulin. And don't try to record the beginning of your podcast when you're sick. At the end of the episode, I'm going to read a couple of Nicole's Instagram posts that will update you even further from what she's about to tell you.
Nicole 1:49
My name is Nicole Egger, and I'm a type one diabetic. I've had type one. Since I was 17. I was diagnosed two days after my 17th birthday. And I have Omni pod and dex calm right now. So I guess my I've almost had diabetes for 18 years. Okay,
Scott Benner 2:11
I was gonna say so you're in your mid 30s. Right?
Nicole 2:14
Yeah, I'm 34.
Scott Benner 2:15
Excellent. That's your early 30s. What was I thinking?
Nicole 2:18
Yeah, I don't know. I already sometimes I think I'm already 40 at this point. So. So ain't like that I'm
Scott Benner 2:24
trying to figure out like, I always like kind of look back and try to think like, how do I meet the people who are on the podcast and stuff like that? And where does it start from? And sometimes it's me, I see people and I'm like, oh, that person there. Sometimes I get a lot of messages, okay to talk to this person. Sometimes it's a mix. You're just sort of known for being very honest about, I guess the things that haven't gone exactly right. With your diabetes. Is that? Is that how you think? How do you think of yourself? You know, inside of the diabetes community, what do you see as your partner?
Nicole 2:57
Um, well, in regards to social media, which, over the last two or three years has been something that I've been pretty active on. It's it's basically talking about complications, which I realize it doesn't make me always part of the cool group. You know, like, the cool kids on Instagram or wherever. But I feel like it's really important to get my story out there. And in doing that, I've learned I've met so many people or talk to so many people in regards to Yeah, I've got retinopathy, or I've got gastro precice or I have this or I have that. So that's kind of what I feel like, my platform is just the diabetes complications. Yeah.
Scott Benner 3:39
Okay. And I didn't know there was a cool group.
Nicole 3:42
Well, maybe that's, that's probably just in my mind.
Scott Benner 3:46
Now, I'm pretty sure I'm not part of it.
Nicole 3:50
No, you know, when I say that, and I don't want to offend anyone, because I, you know, I love the diabetes community. But I think that a lot of the organizations that are big, really want to represent type one diabetics, as everything's fine. You can live with this disease for a really long time, and nothing's gonna go wrong. And I sometimes feel like there's this not that it's pushed under the rug. I just people aren't talking about it. Right. It's not it's not pretty. Yeah, it's not pretty. So people don't want to talk about it.
Scott Benner 4:23
Yeah. So I think that I think that, that there's a couple of like, groups, right, there's groups who are trying to figure out how to live and how to manage and what's, you know, what's the right thing to do day to day, and I think there's groups who are just trying to be positive, which I think there's a lot of I mean, there's a lot of value in all of that to be perfectly honest, but I think that that you just it depends on what I don't know like, what lane you're in at the moment, like, you know, where's your head right now, but nobody is interested in wondering about the bad stuff. And right, because it seems like you know, I think I've said it like this before, but Have you ever met a smoker? Who thought they were getting cancer later in life? No, they always think they're the one right? who's like, I'm not, that's not gonna touch me like everybody, right? Doesn't get sick at the end, like, and so I think that it's, it's one of those things that people prefer to just sort of hope it's not going to be them. And, and and therefore, and it's I kind of get it like do you not? I mean, like I maybe I'm more than kind of get it like I but but there's a ton of value in talking about it. And right and I have my own perspective on that. But what forced you to forced you what, what not only forced what, what got you to start talking about it?
Nicole 5:40
Well, I think I think it's important to know, even before I answer that, that question, and let's come back to that in a second, if you don't mind, remind me is that, you know, I was diagnosed at 17 years old. And that's a big piece of this. Because, you know, I was not diagnosed as a child where I had my mom and dad, counting carbs, and making sugar free meals or whatever it was, and going to diabetes camp, I was practically an adult. So the way I was diagnosed, and the the people around me be either doctors or even my parents, or whatever, that triggered how I responded to my diagnosis. And it led me down this denial tunnel, right. And I did think I mean, I knew my blood sugar's were really high. I knew that was bad. And I knew that it didn't make me feel good. But I got stuck in it. And I just, it just kept going. And for 15 years, I was non compliant. And that's the other thing is that there's a lot of people that are doing that. So for you know, the handful or I mean, I don't know what the statistics are, we'd never really know, for the people that are, you know, running marathons and living well, diabetes, there's also this group of people that aren't living well with it. And I really, I want, I want the community to acknowledge that and embrace it, so we can help each other.
Scott Benner 7:00
Yeah, that makes sense. Okay, so let's dig into that for a minute. So you diagnosed 17 years old? You just getting ready to graduate from high school, or had you just graduated? It's in that time frame, right?
Nicole 7:10
Yeah, it was the it was the middle of my junior year of high school. Okay, and so
Scott Benner 7:13
and yeah, so let me help me to understand a little bit once you're diagnosed, was it 17 years ago? Was it something that just didn't? Like, how did your parents not get involved that it just not work out that they were involved? Did you say, oh, I'll take care of this. And they were like, right on or how did it? How did you know? How did the work division work itself out?
Nicole 7:32
You know, it seems kind of like a blur now, but I just I was I was an athlete. So I played water polo. And I was on the swim team in high school, and those seasons are back to back. So I remember having the symptoms like everybody has and everything, and my cousin is a type one diabetic. So as I was complaining about I'm like, I'm paying 20 times a day. And I started vocally, you know, being vocal to friends and then to my mom, and I think I came back came out and I said, Mom, look at these jeans. They're from like, eighth grade. So no, so my cousin hurt. My mom's brother's daughter had had been diagnosed with type one years before. And I think my mom kind of had a feeling. So she's like, you know, you might have diabetes, so we need to get you checked. So she knew something. And then sure enough, I went to a doctor, and I remember him saying, well, you have diabetes, but we don't know if it's type one or type two. And I looked at my mom, and I was like, get me out of here. Like, take me to someone who knows what the heck's going on, because this is ridiculous. And right away, I was diagnosed as type one. And I remember learning how to take injections. And that's it. I mean, I remember sitting in my room with a vial of insulin and a syringe and thinking like, Okay, I have diabetes. But they just, I think my parents, they may and I've, I love my mom, we are very close, and she's very much a part of my diabetes now. So and I know she's gonna want to hear this. I don't want to hurt her feelings. But I do think that both of my parents there, they were on their own denial. I think, I think, I think that people can only handle so much. And I just, and I was 17. You know, I, my mom's like, you know, we used to ask you about your blood sugar, you'd be kind of a brat like, I got it. And maybe I was saying that I don't really know. I just, I know that there was a disconnect between the support there really, I really wasn't getting any. I had a really, doctor that was not being helpful.
Scott Benner 9:34
I think it's fantastic that you said that because I first of all, I understand that you're you're not trying to crap on your mom. And and at the same time, you can't really tell the story. If you don't, you know, say honestly, like, Look, I was 17 it's an in between age. I'm not really an adult. I'm not really a child. You know, I wasn't really so open when people asked about it, and maybe it was easier for my parents to just say, Oh, it's gonna be okay. Everything's fine. And it like maybe that's how simply it started, you know, just in that kind of just, I don't know, it's just a it's just a simple human story. It's just, you know, it's not anything bad. Nobody was, you know, nobody was willfully marching around going, I'm not helping that kid with this and you weren't, you know, like it just
Unknown Speaker 10:18
yeah,
Scott Benner 10:19
I think it's important for people to know that you don't end up. You don't end up down that road all the time. Because you're just, you know, just willfully saying, I'm gonna go down this road, like sometimes. Right, right is what it is, you know.
Nicole 10:33
And I think that, because I was like, I got this, I'm fine. Everyone thought I was. So my friends. I mean, everybody thought I was no one knew what was going on. And what was happening was, my body was I was destroying my body. Like every piece of me.
Scott Benner 10:52
At what age do you think you You knew? Like, not from doctors or from tests or anything like that. But what age did you know? I should, this isn't okay. Like, I'm physically. There's an issue for here. Like when I don't mean like, when did something go wrong? Like when did you just start feeling so horrible that you were like, I know, this isn't right, I guess
Nicole 11:12
I think it was specifically two years after I was diagnosed, that I went to a, I was seeking out a diabetes support group, I think what I was looking for was, you know, people like me, and maybe even young people. And I did find a support group. It was more, you know, like I said, I was 19 at that time. So it was probably people in their 30s, which, you know, they they my blood sugar's were high. They were like 300 and 400 500. And the people in the group were like, What is wrong with you? They shamed me in a sense that the other diabetics were not nice to me.
Scott Benner 11:47
So most of the time, your blood sugar was high. When you went to a support group, all the support group did was say, Hey, what are you doing wrong?
Nicole 11:53
Yeah, they're like, What is wrong with you? Like, what are you thinking? Like what you know, and my doctor, when I was first diagnosed, he basically was like, your blood sugar needs to be 120 all the time. So I tried to get my blood sugar. This is before social media. So and this is and I and my cousin and I weren't close, she was a no state. So I didn't know anyone with diabetes. Like there was nothing I wasn't. You know? Yeah. So the doctor gave
Scott Benner 12:20
you an unreasonable expectation with no idea about how to reach it. 100%, right. Yeah, you did the best you could, it wasn't very good. And very understandable. You reach out to other people thinking maybe these people will help me and these people just use you, as a way to make themselves feel better. It you know, and that's, that's interesting, because we do that, as a group, a lot of it rears its head in a couple of different ways for you, I imagine you go into the support group, and there's a person in there who's can't get their blood sugar under 250, but sees your 300 and thinks while I'm doing better than her. And so if I if I can let all my kind of anger and rage and fear out on this girl, and I'll feel better, because my 250 is better than her 300 you don't mean like that kind of like, that horribleness that people can have in them. There's, you know, I don't want to out anybody but somebody just somebody just had a really horrible, like, issue in their life. And other people took the opportunity to go, Oh, you shouldn't have done that. You know, like, and this person's, this person didn't do anything on purpose. They weren't negligent. They ended up in a really bad way. And there were some people who took that moment to come in and try to make themselves feel better on their, you know, off of them. And it's just yeah, it's, it's, it's something because when you stop and really, like diagnose it and look at it, it's even understandable those people are struggling like mightily. And and they're probably on their way to tipping over like those people in your support group weren't there just for relaxation, they needed some support to write. And just the support they found was just going Ooh, that girl's worse off than I am. And so I'm not so bad. And that is horrible and understandable, literally in the same breath. And it sucks, you know?
Nicole 14:15
Yeah, I think I think at that point, I gave up. I was like, I'm done. This is a you know, I can't and I didn't understand that. There were highs and lows. I did not understand that. I knew I was terror. And that was the other piece. I was terrified of going low. That was a great fear of mine. But I didn't know. I mean, it sounds dumb now, but I didn't know that. That was okay. My doctor didn't like I said there was like this target and you're either in it or you're not. And it was it was awful. So I stopped seeing him. I stopped going to the doctor and I was going just to get insulin at one point. I wasn't talking about it. I was not trying to make friends with diabetics. I was not I just wasn't doing anything. I just was like, I Don't care, I'm done enough insulin to stay alive. Exactly. So in the beginning, so for the first two years, I did injections. And I think I think that time I was being as compliant as I could be. But once I went on the pump, which I also did not want the pump, because I did injections in my size. I didn't want anything in my stomach. I don't know why I just was I was freaked out. But I use like the top part of my butt for my site. And once I knew you could put a pump site there, I got the pump. I was on, not what I'm on now another pump for about 12 years, and I just ran the background insulin. I wasn't I wasn't bolson I would drink whatever I wanted. I'd have a soda or coffee from Starbucks. And you know, and I've had other diabetics even today, they're like, why would you do that? Or that was dumb. But there was there was a mental piece of this there was denial going on. There was shame, there was guilt there was not having the support, you know?
Scott Benner 16:06
Yet, okay, so you're reminding me of, Okay, I'm gonna record the on the pod ad. Don't feel good, guys. If you're listening to this in the first couple days of its release, probably not beyond February 23 2018. The Omni pod CEO Oh, Shea see who's been on the show a couple of times. She's coming on next week. If you have questions for you can go to either of my Facebook pages for Juicebox Podcast or for Arden's day and leave. There's there's a post already up. If you have questions for Shay, she can leave them there, and I'll do my best to get them answered. And as you can tell, my head is all swimming and I'm not making a lot of sense. So see where this goes. I also kind of can't breathe. Cheese's. This is a mess. Maybe I should run an ad I've already recorded Omni pod baby, we're gonna talk about the best insulin pump in the world. We're going to talk about it in simple simple terms today. You have a car, you ever need gas? You did right? You went to the gas station, maybe you got out you took the little hose you stuck in the side of the car, you squeeze the thing in the gas went in the car, maybe somebody pumped it for you. Maybe you live in New Jersey. Anyway, New Jersey pumps gas, they don't let you pump it. That's the point there. Nevertheless, can you imagine if you could only drive as far as that hose went? If you were always stuck to that gas pump? If you couldn't get away from it, no matter what. And if you did, if you said oh, I have to go a little farther than this hose will reach I'm gonna have to disconnect from this hose. You're going to drive away and run out of gas, then what? Is that? What you want to do? Do you want to be driving around stuck to a gas pump your whole life? You do not? That would be silly. It would actually be patently ridiculous. Now maybe there was a time in the past when that was all the technology would allow you to do is be attached to your gas pump while you were driving around. But that's not today. Today, technology exists. It's better. tubeless insulin pumps, for instance, are way better than tube insulin pumps, in my opinion, because you're not attached to something else. Why do I want to be attached to something just so I can get my insulin? Why do I want to have to unattach from it to take a shower or go swimming or playing a sport. I don't want to do that. You need your insulin, you need it all the time. You don't need it most of the time. You don't need it some of the time you need it constantly. I do not want you to feel attached. I want you to go to my omnipod.com Ford slash juice box and find out what freedom feels like. I absolutely love on the pot. And I think you will tell you're reminding me of when social media exploded out a little more Twitter became popular. There was a person with diabetes in the in the twittersphere. And she was I don't remember her name. I wouldn't say it if I did, but but she was definitely afraid of her insulin. Mm hmm. And so she would do exactly what you're saying like oh, I you know, I have my pump on. And my backgrounds running. But I can't bring myself to Bolus. And I watched countless well meaning people very supportively tried to help this person to just, hey, just look, you know, you know, think it through like this is probably going to take eight units. So just try four and see what happens. Right? And she couldn't do it. And and steadfastly couldn't she was having a real significant psychological impediment, you know, and eventually, one day she just disappeared. And I've always just sort of wondered about her. You know, I think and I think there are probably so many people like her that we're just not aware of she was just the one that had the nerve to speak up on Twitter. She was close enough to she knew she needed the help, but she could never take it and she could never even follow like she even knew you could see when she was talking. She knew what to do. But she couldn't write she couldn't bring herself to do whatever it was.
Nicole 19:59
Yeah I had Yeah, I had this fear that I was gonna die in my sleep, which every now and then that thought will come into my mind. But I'm not the same diabetic today as I was, you know, many years ago. So did you have a low
Scott Benner 20:15
that that scared you enough? Or did someone put the fear in you? How did you come up with that feeling?
Nicole 20:21
I you know, I don't know. I think I don't ever remember. My actual lowest low was probably a year ago, I was 35 off of an airplane. So I think that there was other that's like a whole nother that could be a whole episode, you know, flying well wearing an insulin pump. But I don't know, I just I didn't want to deal with it. And I didn't want to be low. I didn't the thought of passing out and someone finding me or having you know,
Scott Benner 20:50
it struck you so harshly that the other stuff didn't matter the feelings, right? sloshy thinking about what?
Unknown Speaker 20:56
All right. All that
Scott Benner 20:58
was like, well, that's not happening to me now. So
Nicole 21:00
this wins. Exactly. And I didn't think that I mean, I knew like I my doctors had not, they weren't like, I mean, they saw my blood work. They saw me anyone sees and they just,
Scott Benner 21:12
you were just the girl that they thought like, well, we can't help her. So everyone's not gonna try because i have i've,
Nicole 21:18
you know what, I never, I never had anybody, like, I wasn't like that girl. Like, I never had people. There was one or two. I had to get my gallbladder out years ago, it was an emergency surgery. Just like your appendix sometimes, you know, people have to get their gallbladder out. And so that so it was the surgeon. He was like, your UNC is really hot, because it was like 13 to 15%. Okay, it was off the charts like that is not normal, right? And he's like, you're gonna die? I'm like, No, I'm not. He's like, Yeah, he's like, he, he actually gave me five years to live. He's like this, you can't do this. And he actually called me. You know, and this was the surgeon. So he called me has always called me a couple times after that. And I did go back for my follow up. So he could, you know, look at the they use glue or whatever to fill me up to close me up. But yeah, I know, I just I wouldn't hear it.
Scott Benner 22:17
He saw your pre law, your pre surgery bloodwork saw your agency, and just said, Look, this is like crazy out of control. You're not gonna live like this and you didn't write you didn't believe him, or the amount is greater than his threat? Both. Okay, so I have a question. Maybe answer it, maybe you can. I always wonder about this. In other aspects of your life? Does your mind work like that? Do you get an electric bill? You know, you can't pay and not open it?
Unknown Speaker 22:49
That kind of thing?
Unknown Speaker 22:51
Maybe, okay.
Scott Benner 22:53
Because it's not a judgment. I'm just interested to know if, if you're, if you're, if you randomly getting Type One Diabetes is randomly more dangerous than someone else randomly getting type one diabetes, just for the fact of how your mind naturally works?
Nicole 23:10
That's really interesting. Yeah. It's definitely it's definitely a possibility. You know, I think when was funny that you brought up mail, because obviously, now that I'm deep into this, you know, I'm not, I'm not dealing with just, you know, money for insulin and pumps and see gems, I've got serious complications. And with that comes bills. And with that comes money. And, you know, I I'll be honest, I can't pay all the bills. I just can't
Scott Benner 23:42
know. Imagine how I mean, I can't imagine. Yeah, I guess but I imagine it's a lot. And so, see, because I I've said this here before, but I think it really begs saying in this episode, that I'm just, you know, when people hear how I am with with managing my daughter, you have to understand the randomness. That is who I am, right? Like it's, I'm a person who was put up for adoption, right when I was a brand new baby, and and I'm adopted by people who are very lovely, but they're blue collar. And I'm clearly unlike my mom will never hear this, but I'm clearly smarter than the people who raised me. And it wasn't it's not a judgment or anything like that. They're just brains worked one way, they were sort of simple people. I don't mean that they were not as smart as me because they were blue collar. I mean that I know plenty of very smart blue collar people. I just mean that something would come up and I would see this common sense approach to it. And I would watch them struggle to come up with any answer that was anywhere near mine. And even as a person in their early teens, my mom was coming to me and asking me about life things going like what would you do here? And it was a weird thing. And then right and then my dad left my mom. So now I've been basically abandoned once at adoption. I've been now abandoned again by the you know, the man who adopted me and My mom was broke. And then what to do next sort of fell to me at 13 1415 years old, I raised my brothers when I was a teenager while my mom went back to work, all these things that happened to me in my life, I kept responding to, but I don't take credit for that. I'm not telling you that I got thrown into the situation, and I stood up, it is just for whatever reason who I am. And so when this diabetes thing happened, I just attacked it in the same way. If I heard somebody saying something, it didn't make as much sense as what i thought i disregarded them and went with what I thought, I have a don't give up attitude, I you know, but this is not something I built or created or willfully did. And I, I really, genuinely believe that what happened to you isn't something that you built, created or willfully did, either. I just think it's who we are. And some people situations, lend to their strengths, and some people situations lend to their weaknesses. And that's beyond your control. You know,
Nicole 26:03
yeah, you know, I did a post recently where, you know, I taught, I see, I never, I don't want to blame anyone, right? Because again, I'm not in that space that I was like, I'm not, I am not non compliant anymore. So I don't want to like blame my mom or blame the doctors or blaming anyone. But for me, it has been important to look back and see what did go wrong. And one thing I can say is that, no matter how old someone is, when they get diagnosed, I don't care if you're two, or you're 10, or you're 21, or you're 50, there needs to be that support. And there needs to be like, I call it a diabetes team, right of people. And I think that how a parents how their attitude is towards their children and their diagnosis and the support they're given, will can set them up for success or failure. If that makes any sense. It does.
Scott Benner 27:02
And everybody needs some level of support. Some people might need more, some people might need less, some people might need more nuts and bolts support. Some people might need more emotional support, but there's a need for everybody who's diagnosed. And right and, and so that structure has to be in place. So you can take from it what you what you require, right so that you can be successful, because there is no doubt that in, in the right, in the right framework, you would have probably been more successful early on the new bar. It's just right randomness, you know, the randomness of your life just did not support you in any of the ways you needed.
Nicole 27:38
Right. And I don't I mean, and I'm thinking now, oh, gosh, everyone's gonna be listening to this. And you're gonna think like, Oh, well, this is a personality thing. This is just no, no, no, who she who she is, and I, you know, I have a lot of other autoimmune diseases where I think like I have celiac disease, I'm not sure if you're familiar. And basically, I can't have wheat, rye malt barley or oats. And that that diagnosis came in my 20s. So I've had that for 10 or 11 years. And I've always been compliant. And the difference between celiac and type one for me was with diabetes, I could be high and there was no consequence in that moment, right. But with celiac disease, it's like, Okay, if I eat something I'm not supposed to, I'm gonna have diarrhea, and not just once, but for the whole day. And then I'm gonna feel like I have the flu. So it was very, like, I'm not going to do that, because that doesn't feel good.
Scott Benner 28:35
No, that listen, that makes a bunch of sense. And I want you to know that I don't going back for a second. Like I didn't, I don't mean that it's a personality issue. Like you're a person who doesn't care. I just mean that. I just mean that there's sometimes it's just who you are like, I don't there's certain colors I don't like if you if you force that color on me every day, I wouldn't begin to like it. I just picked on that there's that thing, like my brain would always respond to that color the same way. Right? You know what I mean? Like if you there's stuff Look, there are things as much as I might be a go getter about some stuff. There's some stuff that that my wife will point out to you that if I don't like the thing that's going on, I ignore it. You know, like, I have to do something but it's not something I'll enjoy doing. So I ignore it. Right? I'm completely aware of that about myself. It has never made me change once But to your point it never also gave me diarrhea or retinopathy. So but but but it just but if I could have easily fallen into and I still could I could get you know, wouldn't it be ironic if I got type two diabetes and ended up being the worst type two diabetic in the world, like you just you don't know what, what it is that you're going to respond to not respond to. And it is difficult to force yourself past something, you know, especially when it's hardwired so you know you you don't you don't, you don't look at a person who's depressed and tell them what you're just not trying hard enough not to be depressed. And and the idea of depression or having built in responses to things I don't think is any different. I just think it's who you are. It's how you're wired. So right. So tell me a little bit about these high blood sugars and what they brought. What was your first complication that
Unknown Speaker 30:17
came up?
Scott Benner 30:18
I'm incredibly excited today to tell you about Dexcom. Dexcom is a continuous glucose monitor. Those are a lot of big words. I don't know if you know what that means or not. I'm going to tell you, do you know what your blood sugar is? Right now? Do you have type one diabetes, you know what your blood sugar is right now? Do you have a child with Type One Diabetes? Who's in the next room are at school? Do you know what their blood sugar is? Right now? I know what my daughter's buzz sugar is. It's 115. And it's nice and steady. It's been steady for the last three hours and kind of moving just gently between 90 and 115. How do I know that looking at an app on my iPhone. Now, if I had an Android phone, I could also look at an app there too. So I'm looking at my daughter's blood sugar from across town while she's at school. That's called the dexcom share. A continuous glucose monitor is exactly what it sounds like. It is a continuous, which means all the time ability to look at what your blood sugar is or what your loved ones blood sugar is being able to see a blood sugar when it's moving, and react to it. Being able to react like that. That's the key to keeping your blood sugar where you want it. That's why her blood sugar is at 115 right now it's why Arden's a one season between five, six and six, two for almost four years. Because we get a small announcement from the from the next time Hey, your blood sugar's on the way up, and we're able to just bump it back down again. There's no waiting until three hours to test to find out your blood sugar's 200 points higher than you think it is. And then you're fighting with it all the time. The bumping and nudging that you hear me talking about on the podcast is possible. With the dexcom share and follow ups. It's it's absolutely spectacular. I really do want you to go to dexcom.com forward slash juice box to find out more about the Dexcom. You have to don't confuse it with any other continuous glucose monitor in the world. Dexcom is the absolute best dexcom.com forward slash juice box. As soon as this episode is over, type that address into your browser or click the link in your show notes. You will absolutely be happy that you did. Please remember these results are mine and yours may vary. What was your first complication that came up?
Nicole 32:33
After having diabetes for about 15 years. I remember telling my mom just in passing because in 2009 I got I had a prescription for glasses, but it was it was like minimal, just made things a little bit more crisp. And I had noticed I mean, I wasn't really having any symptoms. I just I wanted contacts. I wanted to be able to wear my glasses. You know, I wasn't I don't like glasses on me personally. So I wasn't wearing um, I wanted to wear something at night I said, you know, I'm going to go get contacts. My mom's like, Okay, so my doctor, my eye doctor had just retired. And for those wondering, I was going to the eye doctor, I did go once a year. I can't explain why I was not compliant in some areas and others because i guess i in the back of my mind, I wanted to make sure that I was okay knowing my blood sugar's were so high. So my doctor had retired and I went and there was a new woman who had a heavy accent that I did not know. And she looked at my eyes for like a second and stood back. And she had this reaction. And she's like, they're they're, they're bleeding. And I'm like, Yeah, I mean, I could barely understand what she was saying. And I was like, what's bleeding? And she said, you have diabetes and your eye and your eyes. I was like, okay, and I still I mean even she was acting really weird, especially for a doctor like it was very dramatic. And I was like, okay, and she wrote down the name of someone and said, You need a retina specialist. So I told my mom and dad what had happened and they were like, you're not going to get my dad actually has a genetic disease called RP, which is not diabetes related, but it has to do with the eyes and it can make you go blind. So he already had a retina specialist. He's like, I've already seen that doctor that they want you to see the doctor is a jerk. He said you're gonna go to UCLA and see my doctor. You know, I wasn't even an even as an adult. Like he was telling me you're gonna do this,
Scott Benner 34:39
because you were the next step button how
Unknown Speaker 34:41
important right?
Scott Benner 34:45
You have diabetes in your eyes is a ridiculous sentence.
Unknown Speaker 34:49
Yeah.
Scott Benner 34:50
It's staggering that that someone would have such an unfeeling
Nicole 34:56
Yeah, well and and and with that with that comment, some people Some people would just not go to the eye doctor, they would be so scared, because people don't always want to know what's wrong with them. For me, it's like, if you tell me what's wrong, then I'm going to go and research it. Like, I need to know exactly what's going to happen. And then that helps ease my anxiety. If I don't know what's going on, then I freak out. So I want to know, and, and I've told all my doctors, please, like, Don't Don't sugarcoat anything, just let me know what's going on. So I can mentally prepare and deal with it. So my mom went with me to UCLA probably a month later, and basically the doctor that you know, UCLA uses fellows, which are doctors that are practicing. So they scanned me did all these tests and everything. They brought me behind the the actual room where they look at you. And I remember I was looking straight at the doctor. My mom was behind me, the two fellows were to the side of me. And he said, Well, you know, it's not good. I said, Okay. And he said, You have diabetic retinopathy, and it's proliferative retinopathy. So basically, they diagnosed me with end stage, retinopathy. And proliferative retinopathy is the type that will can make you go blind. I that was that was only like, that was in 2015. So I'm 34. I'm almost 35 now. So it's just a few years ago. It was what, two and a half, three years ago? Yeah, it just, it's
Scott Benner 36:30
interesting for people to understand that you began at 17 years old, and put in put in, you know, that many years of, you know, just not really taking great care, and that it still took that long for something to happen, because because when you're doing that, I mean, you've said it, and I think people can imagine it, you're betting you're like, Okay, well, maybe it won't happen to me, and write the message really does need to be, it is going to happen, but you know, like, it's not like you're gonna just, you're not gonna let your blood sugar be 300 forever, and nothing's ever going to come with it.
Nicole 37:04
Right, exactly. And that's why I tell people all the time, it's not a matter of if it's a matter of win like that, that this is not, I'm not like some I'm not a ninja turtle. You know what I mean? I'm not the only diabetic in the world doing this or that this has happened to Yeah. So basically, after, you know, he's telling me all this stuff. And then all of a sudden, he says, you know, and this can be hard for the whole family. And in my mind, I was kind of like, why is he saying that? And I remember in slow motion turning around, and my mom was crying. And my mom doesn't cry. So then I knew it even more than it was serious. And I said, Well, what can you do? Can you fix it? And he said, there are things we can do. And I said, like, what? And he said, Well, we can do lasers, lasers and injections. And I said to my eye, and he said, Yeah, I was like, Okay, well, I'll be asleep, right? And he said, No, you will be awake. So I felt my knees start to buckle. And freaked out. I remember going home and crying in the bathtub and thinking I'm gonna go blind. And so he's been working on me since 2015. At first I went like every two weeks, you know, working on one eye than the next and the next, the next. Now I go every six weeks. And, you know, I tell people, I've had over 20,000 laser burns per eye. I've had probably 48 injections in total. So 20, something to eat. I and I've had one surgery, I had a vitrectomy of the left, I had a major hemorrhage, and I have lost central vision in my left eye. So yeah, it's it's, you know, that's why I talk about it. Because even though it's not pretty, it's like, I don't want this to happen to anybody else.
Scott Benner 38:55
Yeah, it shouldn't be the understanding of this stuff shouldn't be in the abstract that we shouldn't, it shouldn't be in most people's minds. Oh, if my blood sugar's too high for too many years, something bad's gonna happen. Because it's just too in specific. You really knew if you're going to, if you're going to make a bet with your health, you ought to really know what you're betting. You know what I mean? Like, you won't just be random, like, Oh, I you know, maybe I just my fingers won't have as much feeling like, you know, you whatever you end up lying to yourself and thinking is gonna end up happening to you. It was the eyes, like, how long would you say you've been paying? You know, what you would consider to be closer attention to your blood sugar and trying harder to keep it in in that 120 range that the doctor told you about so many years ago?
Nicole 39:39
Right? Well, since when he when I got that diagnosis. I was terrified. And remember, a lot of my stuff is fear, fear based and it's something that I work on even today. I don't I don't want to live in fear. But I was terrified of going blind and specifically being a blind diabetic. I could not comprehend how is that going to work because nobody Like no one I'm I don't have a husband or a boyfriend or best friend or anybody that knows how to give me insulin like no one knows how, how my body works besides for me. So in my mind, I have to 100% all the time be in charge and taking care of this. I just it's like if I don't if I can't see my beater, and I can't take it, you know, there was all these like, what if and it was just playing like a movie? I'm like, Oh, hell no. And I it woke me up. And you know, I think I don't I think it was either right before right when that was happening. I got Dexcom. So those were the two things that happen was one I was not going to be a blind diabetic. In my mind. I was like, No, and two, I got Dexcom and Dexcom saved my life. Oh, I could see my blood sugar's I could see what the food was doing. You know, I also have some form of gastroparesis. So that makes bolusing difficult for me, but it changed my life. I could see, it's almost like when you don't have a CGM when you don't have Dexcom you're blind in a sense. And that I that? Yeah. So So now my agency, like I said, when I was in 1314 15%, and I don't talk about agency for kind of the reason we talked about earlier, is that people compare themselves. But it is important for my story to know that my agency now is the last one I had about a month and a half ago with 6.9%. It's the lowest day one see I've had in almost 18 years to see graduations.
Unknown Speaker 41:36
That's amazing. Yeah, a lot of Yeah. A lot of Yeah, I mean, a lot of fear, I
Unknown Speaker 41:39
would imagine.
Nicole 41:40
Yeah. And it's it's a lot of self control. Because I don't just, you know, I had someone tell me, oh, well, don't be afraid of the food. Just, you know, just just keep trying. It's like when you're newly diagnosed, you have time to have some high blood sugars here and there. And to play with the food. When you have complications. Every single high blood sugar I have, it's like, Oh, is that gonna pop up? Like is Yeah, do I have new vessels bleeding in my eyes now? Like, did my kidney just take another shot? Like, I don't? I don't, I don't want to try. You know, it's like, I eat specific things. And it's, it's very controlled. And I really don't go out have I had a dietician say, Well, yeah, I had a dietician. Tell me recently if you stay in your box, and she made like a box, like an imaginary box with her fingers. Yeah, well, no, I was insulted. She basically it was just like, I don't know what she said. I probably wasn't she started making the box tape. I was just like, whatever. You know, like, this is what works for me. I you're not me, I don't really care. I'm trying to live before I wasn't really trying to live now. I want to live like I want to do things. And my health is it's compromised. Like, we're This is. It's not good. And I don't like to think of myself as like the sick person, but I'm struggling. You know, I'm physically struggling at this point.
Scott Benner 43:05
I'm assuming you're limited by the gastro priestess as well. Right. So is that is that so for people who don't completely get the idea of like so is your stomach doesn't empty the way that it's expected to see you can't timing the insolence much more difficult. Is that right?
Nicole 43:23
Right. So basically, it's kind of it's like neuropathy, you know, nerve it's nerve damage in the stomach and I've got I'm, I'm riddled with neuropathy. I've got it my feet, my you know, legs and everything, my stomach. So basically, the food will just I'll eat it, and it'll just sit there. Yeah. So
Scott Benner 43:42
now leave it alone the way it's supposed to digesting it. So it's not sending carbs into your system.
Nicole 43:49
Right away. So, right. So now we have a whole new problem. And diabetics also don't understand this. Like I cannot Bolus 15 minutes ahead of time. Or right when I start eating I Bolus when Dexcom. When the arrow I call it a slight arrow when it starts to slightly go up, I Bolus right away. This is a timing thing like this is the timing is crucial because if I do not Bolus, you know if I don't catch it in time, and now I know there's certain foods that are more difficult than others or like I know blueberries, I can eat blueberries and Bolus five minutes in and be okay. There's some foods where it's like once that high once you have a straight up arrow, you know, and then you're waiting 15 minutes for the insulin to kick in. It's just it's a nightmare.
Scott Benner 44:35
So I think I think the message here is is that figure this stuff out now before you have problems because if you really stop and just listen for a second what Nicole just said. She said that I've had a blood vessel burst in my eye already needed surgery. I'm afraid if my blood sugar goes up again, it's going to happen again. But I can't tie my insulin properly because the neuropathy in my stomach keeps the food from breaking down in a way that Can Pre-Bolus she isn't you are in literally, like a four pronged hell, like really, and this is something you have to think of every time you eat, you know,
Nicole 45:11
right well, and there's and there's times where like all you say, I do not eat pasta, like okay, pizza, maybe I'll eat pizza two or three times a month as a treat, knowing knowing it is a food that I'm gonna hit 200 and I'll be lucky if I don't go higher than that. So it's not really worth it. But every now and then I crave it and I want it, I want it. You know, I try not to be too extreme. there's times where like, I won't have a rise in my blood sugar for two and a half hours. And then it's like, Okay, well, how much insulin Do I need now? Because it's been two hours.
Scott Benner 45:46
Well, and here's the question is, is, is it two hours? Because my body's just now starting to break down this food? Or is it two hours? Because maybe I was going to get low without some of that food and you have no way of knowing it's just yeah, so when your blood sugar starts to creep up, is it a bolus for all the food? Is it a bolus for some of it? Is it Yeah, no, I know and and and everything you're going through is just magnified so much by consequence the like because your consequences are now in the moment they're real they exist today they're not they're not something that may happen in the future anymore. They are happened to the future is now like it right and it's happening right now is there Okay, hold on. Let's take a breath, gastroparesis, their apathy, I issues. celiac, anything else?
Nicole 46:34
I mean, I will in regards to the diabetes, I also have kidney disease, unfortunately, right after I got my I and I and kid because I disease and kidney disease can come hand in hand and type one diabetics. So basically, you know, I'm assuming, see, I'm not one of those people, I don't always get my bloodwork and analyze it. I trust my doctor, my doctor is a type one diabetic, his daughter's a type one like, so. He tells me things and I listen, and I take that but he you know, actually, okay, let's back up. I had gone to my annual gynecologist appointment, who my gynecologist I also love and he said, you know, You're spilling protein in your urine. I said, Yeah, my diabetes doctor, he mentioned that and he's like, well, you need to like, go talk to him about it again. And I was like, okay, and again, I I'm not thinking that it's anything big. I already know about it. So I tell my diabetes Doctor, what my gynecologist says, and he said, Yeah, you know, you have beginning stages of kidney disease, but it's pretty normal. I mean, most diabetics when you've had diabetes, 20 3040 5060 years, although I've heard some say I have no complications, which I don't know how that's possible. He's like, it will happen, you'll have a little bit of kidney damage, and it's not a big deal. It's, it's in five stages. So stage one being maybe beginning stages into stage five. And I said, Okay, so it's stage one. And he said, Yeah, I said, but Are you positive? And I started questioning it because I'm already going through the AI stuff. And I said, No, I told him I said, That's not good enough. I want to know where it's at. Like I want to know exactly how much kidney function I have. And I put I had to push him had I not pushed him I don't think I would have found out obviously so soon, but when the test came back, it's a it's called a 24 hour creatinine clearance where you pay into a jug for for 24 hours you collect the urine, you give it to them they analyze it, they came back that I only had 50% function
Unknown Speaker 48:42
which is stage two stage three and he was telling you don't worry about it this is early on
Nicole 48:46
basically he told me what stage one so I mean I still see him he's still my diabetes doctor you know i But yeah, I I pushed for that. And you know, at that point he said I need to refer you to a nephrologist.
Scott Benner 49:03
And give me wish I never marked this podcast as Clean Language because I want to curse but but I can't. So I we don't really know each other except for messaging back and forth to set this up. And as you're talking I'm like rubbing my face down to my skull thinking like this poor person like all this stuff and and she's and now she's trying to get a hold of it cuz you said something really amazing. Somebody said your your Hey, there's protein in your in your urine. And you said I want to go find out what this means. Like you've done a complete 180 degree turn from where you started like the person you were back. Yeah. would have been like, I don't hear what you're saying. And gone home and not thought about it ever again. You might have worried about it been scared of it, but you never would have looked into it. And now now you had I do you think and if you don't have an answer to this, don't force yourself to have an answer. But But back then in the middle of everything that was going on, is there something that you wish could have happened before? before? What happened to your eyes that could have like desert anything you can imagine that could have pushed you forward? prior to it being health issues? Like Like, what would you tell somebody? Like if you could go back in time? What do you think you'd say to yourself?
Nicole 50:26
Yeah, no, no, I don't think No, I don't think so at all, you know, I would tell my self it's not that it's not worth it that that diabetes is so much easier on its own then all these problems that I now have. I mean, I can't have children now. I'm looking at needing a double transplant, you know, so and it makes me get a little choked up because I know that I caused this and so I have to deal you know, with the guilt and the shame but yeah, I it's not worth it. It's it's so much easier to just you know, you know, just take it just take care of it. Just check your blood sugar's that's what I tell people on social media check your blood sugar's like please check your blood sugar's I just posted
Scott Benner 51:17
an episode The other day, which now I realize I'm just running yours next week. Usually, they don't go out as soon as I record them. Because these are the sort of back to back messages I posted one last week with a girl who used to be the catcher for the Alabama softball team. I said in that episode, there is going to be a fight with diabetes. At some point, you can have the fight now, or you can have the fight later. But I would, I would much rather fight now before things go wrong. But while I've still got a chance of winning something like I don't want to fight for my life, I want to fight to keep my life. Right like and and I think that's what you're saying is that this is going to either you're going to deal with your fear now and your anxiety and your and your inability to deal to make good decisions because nobody's giving you tools, all the BS that comes with being diagnosed. You either deal with it now and figure it out, or deal with it later when you're like saying things like that man put 48 needles in my eyes. Like I don't even have the nerve to ask you what that feels like.
Unknown Speaker 52:19
It hurts.
Scott Benner 52:23
And so like, if you're going to get into a fight, eventually you might as well get into the fight that leads you to the best possible outcome.
Nicole 52:29
Yeah, absolutely. Just just deal with it. However, you have to, you know, I I have hatred for my disease. I don't have hate. I don't carry that today. Like I'm, I'm different. But yeah, I hated it. I hated it. And I thought I was invincible. And if somehow
Scott Benner 52:50
you would have met it head on back, then you have to also live with the idea that this probably wouldn't be your life at this point. And and right, but I do want to say something to you. And I don't know how much this will mean coming from a stranger. But you said that it was your fault. But I would really maintain that it's not your fault. It's diabetes fault, which again, is no one's fault, like, like, do you know what I mean? Like, I don't know, I don't want to make it sound super simple. But they say that a few times a year a giant block of frozen urine files out of an airplane and hits the ground never hits. But if but if Nicole, if you got up this morning and said, Oh, my alarm went off at seven and you hit snooze six times, and got up 25 minutes later than you were supposed to walk outside to go to work in a big block of floors and urine fell on your head. I guess you could make the point. It's my fault for pushing the snooze button. But it's not your fault. Like Jamie like there is some randomness to the world that's beyond all of our controls. You getting diabetes is one of those things your mom meets a guy and they're having a baby and their genetics together makes a baby who's more susceptible to diabetes than other babies and you end up with it. Had your mom said yes to the guy that asked her out three weeks before your dad did you know blah, blah, blah. You know what I mean? Like, keep going back in that line. countless people have made countless decisions that led to you being here. None of those you you don't mean like like, right, I get what you're saying that when it happened. You could have done something different. I don't think you're wrong about that. I do think you're wrong to assign fault to it, though. Right? And I hope you don't I mean, I don't know I don't think I can talk you out of it in 20 seconds. But I don't I mean, if the if you can do something for yourself. I would I would say forgive yourself for what you think you did, because I don't think you did anything first of all. Plus, I think it'll just make the rest of your life that much more pleasant, which it's a life now that you're fighting for. So it might as well be one that you're happy with. Right?
Nicole 54:53
Yeah, no, and I and I, I respect what you you know, your opinion and
Scott Benner 54:59
full of crap, and not the I'm talking about. But
Nicole 55:02
no, it's funny because my my friend who also has really bad gastro precice. And she also has retinopathy. I was with her last night with her boyfriend, and he said the exact same thing. So when somebody doesn't matter if you're a stranger or not, when I hear someone, whoever multiple people tell me the same thing, then I do absorb that and think about it. Yeah. You know, I guess. Yeah. And
Scott Benner 55:29
you can be academic about when you're thinking about other people's lives, it's still hard to apply to yourself. Yeah, you know,
Nicole 55:35
yeah, I just. And sometimes I think that this is, in a positive way, my purpose, because I know I have friends that have, you know, certain diabetes complications, and they're not out there talking about it.
Scott Benner 55:50
I've seen you on your Instagram, like, with friends who are in the hospital, or just trying to get people to, you know, meet things head on, and things like that. And it is a really wonderful thing. And you're doing this today. Look, I, you're going to end up being Episode 151 of this podcast, and there have been some incredibly honest people on this podcast, you're probably going to take the crown on honesty, you know, yeah, I was so cool. Because
Unknown Speaker 56:17
I think that's kind of cool. Well, it's
Scott Benner 56:18
amazing, because because nobody really wants to say out loud, look what I did, and look how bad it is, especially knowing like what we talked about in the beginning, that there are some people out there who are going to hear your words, and they're going to use your struggle to make them feel better about the things they're not doing their life. And, you know, God knows, some of them might come after you in public and let you know that they're doing better than you are that you screwed up or whatever makes them feel better to say, you know,
Nicole 56:45
well, you know, what I not to interrupt, but to interrupt, I get emails all the time. I get emails from my head, the email, or like, direct message on Instagram from, you know, someone that was pregnant, and she's like, my, I went black and I can't see and, you know, people that are on dialysis. I mean, I it's mostly actually I patients, or is this normal, and I have to tell people, you know, this is my experience, but go to the doctor, because you need to go to the doctor, right? Like, I can't diagnose you, and I can support you. And I can say, yeah, that happened to me. But at the end of the day, the eye, it's different for all of us. And it's very, very delicate organ. And, you know, I might like I said, My I've got a very close friend who, you know, has same diagnosis, and she's, she's, she's, she's pretty much blind in one eye. She's had had to have multiple surgeries. And, you know, and why, why why did that happen to her and not me? Why did we both have a retract to me? And, you know, although I have, you know, vision loss in that I like, it's hers were far worse than yours. And why
Scott Benner 57:59
you? And that's Yeah, that is survivor's guilt to some degree, I would imagine. Right.
Nicole 58:04
Well, well, you know, it's funny, because, yeah, it's funny, because when my doctors you know, they've been talking about, you know, having a double transplant, you know, kidney and pancreas. Sometimes I think I will feel guilty, because I like to stay on social media and support people and I, if that goes down, and who knows. I mean, I'm getting closer to, to some of that, but I don't know, I don't want people to be pissed at me or, or, or some. You know, what someone said once they're like, Oh, I wish I could have that. It's like, No, you don't, you don't want to wreck your body so bad that you need a kidney. And, I mean, there's so much that they don't know about pancreas transplants anyways, so it's all roses.
Scott Benner 58:47
It's no, like switch fish, you're gonna be on blockers for rejection the rest of your life, which Yeah, with your luck, that hole is going to lender lead dancer. And so you know, like,
Nicole 58:57
yeah, don't put that in my or, like, don't put that in my field.
Scott Benner 59:01
But But you know, but first of all, no one should be hoping that they're paid that their kidneys go so they can get a transplant. Because that is a hard you don't know, I know somebody's going through dialysis for a long time. And it's a personal friend of mine. And it's it's a heart. So
Nicole 59:19
yeah, that Yeah, that's a whole nother you know, yeah, yeah.
Scott Benner 59:22
But so, so point here is, of course, you can't give people medical advice, and of course, but but you can always give them the benefit of your knowledge. Your knowledge isn't going to if you got an organ transplant tomorrow, your knowledge about gastroparesis about retinopathy about being non compliant, that that knowledge doesn't change, it probably grows. It probably gives you a different perspective. You don't have to stop trying to lend help to people because your situation changes. You're such a grow you'll have more to help with right now and as far as people being angry that you got them and not you that's a strange idea. idea, you know, like, Nicole, I absolutely lovely, but you are almost health wise, not someone anyone should feel like I wish I was her. You know, like, it's just, that's just, that's probably someone's just, they're probably just in a dire situation, and they just don't know what else to do or what else to say. But I think you know what they should be doing. They should be confronting their fear, trying to find support, getting answers that will help them take better care of themselves day to day. And, you know, I just I'm, you know, we're so close to an hour, I'm totally having you back on at some point. Because first of all, you're chatty and thoughtful, which keeps me from having to talk too much, which the listeners will appreciate. And, and at the same time, I think there's way more to your story coming and still, that I would love this still. I mean, I would love to do this with you again, if you don't mind.
Nicole 1:00:52
Yeah, no, I would totally I would totally love to. And, and like I said, I'm, I'm, I'm totally open for anyone that has complications or questions. And, you know, I, I do make it a point to try to answer everybody at this point, right?
Scott Benner 1:01:10
An angel on Instagram, that's for sure. How do people find you on Instagram?
Nicole 1:01:14
So, my, I don't know, I call it a handle right? My name or whatever, it's nicknack 143143. So it's ni c n ac 143143, which I was just telling somebody, I do want to change it. So I don't know if there's a way for you to put on the podcast just in case it does change. If you ever changing you tell
Scott Benner 1:01:36
me and I'll because I'm gonna put a link in the show notes. It takes them right to your page. And if you ever change it, I've done it for other people. I'll go back and change it for you. Okay, so let me know. Um, but Geez, I so if you're having Listen, here's, here's the thing, if you don't, if anybody who listens to this podcast doesn't see that what Nicole's talking about is the end result of all the things that we talked about every week on the podcast, trying to avoid if you're not putting those two and two together, please pay closer attention. But, you know, because Nicole, we talked about how to stay away from spikes, how to eat food, without, you know, without creating these high blood sugars and lows later and stuff like that, really understanding how insulin works. It is super important to figure that stuff out now, not later. All right. And and I just wanted, I normally when I re edit, I'll edit this later. And at the end, I thank the person, you know, just kind of, they're not there anymore. But I just I'm gonna Thank you Now like, I just really appreciate you coming on and speaking so openly about this.
Nicole 1:02:36
I will thank you. Thank you for having me. And if I can just say one last thing is that I don't want to scare people, right? Like I don't, I want I want people to have a small healthy amount of fear. But I just tell people, like just do your best, right? Do your best. I get so many people want to know, what's the test for your kidneys? And this? It's like, I don't like, of course, you can email me that and ask me that if you want. But ideally, it's like what what should I do to not end up like you not what test? Do I need to get done right now? Right? Because the people are asking that it means that they've they've they think in their own mind. They've surpassed doing anything now that they're at a point where they may be having the same complication?
Scott Benner 1:03:19
Yeah. Like you said, like they need a healthy amount of fear. I don't even think it's I think that the one thing we don't need around diabetes is fear. I think that people need a healthy amount of respect for what this thing can do. This is no different than holding a loaded gun, driving a car, playing with fire. These are things that could devastate if you misuse them, right. And I think diabetes is just very similar like that, like you. I think the problem is that is the fear like the doctors make you afraid right up front or you get you get the fear because no one gives you information and you're left to wonder or Google or your anxiety takes over. I think that if people have heard me say enough on here, the step that I took first, to getting my daughter situation to where it was and like you said, I don't think it sucks the Sherry one sees because it can make people feel bad. But I do like you I share Ardennes because it shows that like a guy like me who didn't know what he was doing and was struggling as much as anybody could understand diabetes, figured it out and got you know, my daughter is a one sees been between five, six and six two for over four years. And wow, the first step to that was getting rid of my fear. And and that was the I had to figure out a way to do it was so meaningful to me that when I figured out that that was the lesson, anybody who paid me to blog years ago, or even on my own site where I wasn't being paid, all I wrote about was was fear and that it you needed to get rid of it. Because Because that's the first step to making because the rest of these decisions are difficult. And when you're afraid you can't make them be you know, it's just it sucks. It really is.
Nicole 1:05:00
That's right. And that's why I think I said, you said it better than I did. That's why I said healthy. Meaning like, you can't, I can't walk around and say, Oh my God, my blood sugar's 200. And now this is gonna happen. It's like, okay, I did my best. I'm gonna bring it down. You know what I mean? But But yeah, I like how you said,
Scott Benner 1:05:16
I wasn't correcting you. I was just saying that, like, I just in general, like, I knew what you meant. I just, it would be weird. If after 150 episodes and be telling people not to be afraid, I let you say, you need a little bit of fear. And I was just like, right on.
Unknown Speaker 1:05:30
Right? No.
Scott Benner 1:05:34
But But seriously, I'm gonna Let's stop the recording. And I'm just need to say thank you privately. But this was really terrific. You should be applauded for being this open. So thank you very much. I'm incredibly grateful that you did this.
Nicole 1:05:48
Well, thank you for having me. I appreciate it a lot. Absolutely.
Scott Benner 1:05:52
Let me thank Omnipod and Dexcom for sponsoring this episode. And thank them for putting up with me inserting old ads, but I'm having trouble talking today. Please go to my Omni pod.com Ford slash juice box dexcom.com forward slash juice box or the links in your show notes to find out more. Okay, I'm going to try to get through this. After we recorded this episode, I got a note from Nicole that said, You know, I was just thinking and I'm not sure how important it is or if it needs to be mentioned. We didn't dive too much into the kidney disease. But if there was something important for people to know, it's that I didn't stop at 50% function. It has progressed so quickly. It's now at stage four. I say this because you can live well and okay with 50% function. But now I'm facing dialysis and my function is like at 21%. So whether it's the podcast or another time, I think the quickness of the progression is important to share. Two days later, she posted this on her answer page. I wish I had better news. I even wish I had something profound to say. My doctor called and left me a message with the essays labs. He said it's time to call the transplant team. Quote tell them you have chronic kidney disease and you're a patient of mine. Tell them you need a transplant evaluation. Nicole goes on to say so basically they will evaluate me and then they will put me on the deceased donor list. my kidneys are giving up. Honestly, I just cried and cried. I called transplant and left a message and then just stared out the window. Not even thinking feeling like I couldn't really move my legs. Just sitting staring wondering how strong I am wondering if kidney pancreas transplant is safe or a good idea. thinking I'm not ready and I don't want this. Time's up. My body says I feel like I'm trapped in a nightmare. I want to go back in time for a do over too late. Time to keep moving forward. If you want to keep up in the call story, or even thank her for being so bold today on the Juicebox Podcast. She's nicknack 143143 on Instagram. That's Nic NAC 143143. There's also a link in the show
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