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Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

#178 Jimmy Diabetes

Scott Benner

Diabetes theory and management with Scott and Nat...

Natalie and Scott talk diabetes theory, management and The Jimmy Diabetes.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexagoogle 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
Hello friends and welcome to Episode 178 of the Juicebox Podcast. Today's episode, Jimmy diabetes is sponsored by Dexcom on the pod, and our newest sponsor dancing for diabetes, dancing for diabetes spreads awareness through the art of dance, to better educate the community raise funds to find a cure, and to inspire those with diabetes to live healthy and active lives. Now from now until the end of the year, in little 22nd increments every once in a while on the podcast, I'm gonna pop in and tell you something interesting about dancing for diabetes, they're not trying to sell you anything. They just want you to know more about them. Now our other sponsors Dexcom and Omni pod, they're trying to sell you something on the pod wants you to buy the greatest tubeless insulin pump the world has ever known. And Dexcom would really like it. If you looked into the G six continuous glucose monitor. You can go to dexcom.com Ford slash juice box, my omnipod.com forward slash juice box or dancing for diabetes.com dancing the number four diabetes.com You can find these links at Juicebox podcast.com in the show notes of your podcast app, or I guess you could type them into your browser. But then the sponsors don't know you came from me. I mean, you can do that. But you know i'm saying i think you know in this episode I'm gonna be speaking with Natalie. Natalie has had Type One Diabetes for a couple of years. She's in her early 20s. And she initially contacted me because she said she was killing it with multiple daily injections. But by the time she got on the podcast she had upon still the conversation was really amazing. And window couple of different directions I didn't expect. We got into some management ideas. We got into some theories. And at the end, we talked about MDI, so you're gonna get that too. Please don't forget that nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise tend to always consult a physician before making changes to your medical plan. I think you're gonna like this one. Natalie's got a certain something.

Unknown Speaker 2:11
Hello, good morning.

Scott Benner 2:12
Yeah, nice and clear. Good start.

Unknown Speaker 2:14
Good.

Natalie 2:17
And I think Mercury's in retrograde or whatever. And usually that is like tech problems.

Scott Benner 2:23
You're starting to talk about things I don't know about. Now let's dive in. So you're saying that we're recording obviously when Mercury is in retrograde, so put that into layman's terms for me.

Natalie 2:35
Okay, so I'm sure other people that listen to this are gonna like, say that I'm totally wrong, because I don't know too much about it. But I know that whenever mercury goes into retrograde, which is some celestial event technology, I guess just becomes a big problem for some people.

Unknown Speaker 2:57
Really? Is it?

Natalie 2:59
okay for me printers. Actually, it does affect me and anytime I try to print anything I get it doesn't work.

Scott Benner 3:08
I love this.

Natalie 3:08
Okay, so if stuff starts happening for you just blame the planet.

Scott Benner 3:13
I have. I've been blaming recently. Our poor decision to have pets and children. But

Natalie 3:21
yeah, oh, yeah. I have two Bulldogs. And I'm always like, why did I do this?

Scott Benner 3:26
Yeah, this morning. at four o'clock in the morning, Ardennes. We got you know, artists Dexcom went off and I was like, Yeah, I pulled myself into the other room. And it just needed to be calibrated. This is a bad news, this bad timing. So I tested calibrated. I gave her some insulin that she needed. And I sat back down and I thought, well, I don't want to go right back to sleep. I want to make sure the sensor is going to work. So I ended up sitting up for like an hour, which I shouldn't have done. But then it's five o'clock. I'm gonna go okay, I still have two solid hours asleep I can get. I close my eyes. And it's six o'clock. I can hear Indy downstairs, he's like, like whining and I'm like, okay, he needs to go outside. So then I went downstairs, I took him outside. I came back in, it's like six or seven, six or seven. I'm now counting minutes, you know? And I'm like, I'm like, I can still get like 15 minutes of sleep. If I power myself back to sleep right now. I overslept right through my alarm art and slept through her alarm. She was late for school. And I just said to my wife I said, Hey, on my headstone no matter what kills me just write dogs and diabetes got this guy? It just just put that stuff right on.

Natalie 4:37
Oh my god, that should go on mine too. Can I take that for me? Because every actually I was just I was just telling somebody I said in tonight's episode of Is my life a joke. I had like a I had dex alarms for like, hours just saying I was low and I was low for Part of it but then I had just did a new sensor, right? And I don't know about you, but I always get, like 24 hours of just crazy readings. Okay, when I put in a new sensor, it doesn't

Scott Benner 5:12
happen to us like I hear it happened to other people like but last night was one of those where it was like her blood sugar's 96 it needs to be calibrated. Then I calibrated it, it was like 140 I was like, well, that's not the same thing. And like that, like

Natalie 5:25
slightly different.

Scott Benner 5:26
So it's not the worst thing in the world. So I bought it was all good. But yeah, I know some people have the first couple hours of the first day have an issue but wow, yeah, we're the numbers don't look great. It's all it's interesting, because I was just talking to someone in Zacks COMM The other day, and I asked a question about how that little sensor wire works. And the answer. The answer is very much this is proprietary, proprietary information. We can't talk about this with you. And I was like, okay, but you know, it's, it's amazing that that little wire does that, you know, seven, it's coated with something and the coating has to absorb the fluid. I'm like, Oh my god, this is good. Who thought of that?

Natalie 6:04
I mean, you're, you're connected via like Bluetooth, like, yeah, like a Bluetooth signal. crazy to me. And, and same with. So I have an omni pod, really. And I'm like, I have no idea how any of this works. But I'm so glad that it does. Because it makes my life so much easier. But I have no clue how any of it actually work. Yeah, Natalie, if

Scott Benner 6:32
I was on the Mayflower. We'd be like eight miles from Plymouth Rock right now. Because I would have been like we should set out and then I would have gotten to like a river and been like, well, I guess this is where we live. Because I mean, how would you get to the other side of that? Yeah. I don't have the engineering spirit. I don't believe but uh, but the people who are amazing. Yeah, no, no, it's a it's a specific way of thinking. And it really helps everybody. So I appreciate it. Okay, yeah, Natalie, let's, um, let's just say that you're on the podcast today. Because you say you say you are killing it. You know how to kill it with MDI,

Unknown Speaker 7:11
is that correct?

Natalie 7:11
I do. Okay, I know how to kill it with MDI. And actually, I just got a pump in September.

Scott Benner 7:19
a month and a half or two months, maybe. Let me do the math. September. Let's count September as one than October, November and sabinus. And let's call it three months. You've had a pump? Yeah. Okay. And and how old are you? And how long have you been living with diabetes?

Natalie 7:35
So I got diagnosed, I'm 24. And I was diagnosed at 21. Although I should have been diagnosed more like 17 it was a pretty crazy. Couple of years in between 17 and 21.

Scott Benner 7:57
You had a bigger story. Here we go. Okay, I'll bite. What happened when you were 17? Because I know what happened when I was 17. Nothing. Just run around. But God, what happened to you?

Natalie 8:09
Um, well, I guess. I started feeling sick at 17. And, but at the same time, my parents had gotten divorced. And I also had mono that year. And so I was writing a lot of stuff off and as just being like, Oh, well, I'm like, I had a big emotional trauma or whatever, you know, and I'm tired, or then I got Moto, and that's why I'm tired. And I just, I don't know, I need it, there was something off, but I just could write it off to other things. And then as time went on, and I think just intuitively, I started. Like, for example, I was having a lot of digestive problems, and I figured out that gluten was causing me problems. Okay. So I cut that out, and I felt a little bit better. But I think intuitively I was like cutting carbs. Because I felt better. Obviously, my blood sugar was maybe a little bit lower. And so I got to college and I still didn't feel good. But if I could write it off to you know, I was taking the maximum amount of units at college and I was at school one day from like 7am to 7pm with a one hour break in, you know. So I just thought, Well, I'm just working myself too hard, but maybe my thyroids off. So I went and got that checked and they're like, no, it's kind of normal. And by the time I was a junior in college, I was like, done

Scott Benner 10:03
laying on the ground like this.

Natalie 10:05
I was, I was like, This is the end of me something is so wrong. And I was having my heart rate was like all over the place I had developed attack cardia my blood pressure was super low. And then of course, I developed the insane amount of thirst. And, you know, I started looking up like symptoms. And everything that I had, it would like list five things and one of them would be diabetes, diabetes, and I literally not it wasn't even a denial thing. It was just like a I thought that there was no possible way I could have diabetes because I thought you get it when you're like, a little kid. Okay? Because I was just so misinformed. Right? So I, I just like literally brushed it off. Like that's just weird that all like, How crazy is that?

Scott Benner 11:12
Something's wrong with me that mimics diabetes, but it's clearly not diabetes.

Natalie 11:16
Obviously not right.

Scott Benner 11:18
So let me ask you a quick question. When you should you had these digestive issues that you kind of limited your carbs and gluten for and then you were tired and all this stuff happened when you were diagnosed? Did it like did all that stuff magically go away? Do you still have some of those issues? Did your thyroid end up being an issue?

Natalie 11:39
Um, I most of it did go away. Okay. Um, my, I still get a weird heart rate thing. If my blood sugar is high,

Unknown Speaker 11:55
dancing

Scott Benner 11:56
for diabetes holds an annual show in Orlando, Florida. award winning and nationally recognized performers create an evening of entertainment and hope these performers are champions throughout the performing arts community, and in the hearts of those affected by diabetes. Find out more at dancing for diabetes calm that's dancing to number four diabetes.com

Natalie 12:18
I'll get like a tacky cardia my blood sugar's high. You know

Scott Benner 12:21
what I realized? Because you've used the word twice. Now tachycardia. And I realized that I have no idea what it means. But because I've watched Grey's Anatomy for so much of my life, I have an inherited feeling inside of me that I understand the word

Natalie 12:36
mean that my heart rate is in a regular beat, and it's fact.

Unknown Speaker 12:43
Okay, well, that's not my understanding from Grey's Anatomy, but okay.

Scott Benner 12:48
You might be wrong. Yeah,

Natalie 12:50
I guess you know, who knows? Um, but yeah, um, right before diagnosis. It was. I mean, I'd be sitting and it was like, 40, my heart rate would be like, 40. And then I would just stand and do nothing. And it would be like 125 doing absolutely nothing.

Scott Benner 13:14
Have you ever had it further? Did Well, have you ever had your heart like, tested or looked into further?

Natalie 13:21
Well, so I went to my doctor, and I said, Okay, I figured it out. My I'm my heart rate is crazy. And she was like, No, that's like, that's super rare. You don't have that. And then she tested it and went, Oh, my God, you do have it. Let's just get some blood work. Just to rule everything else out. I said, Okay. So she did blood work she had, she had called a cardiologist for me. And they called me the office called me and they said, okay, your blood work came in and you're all clear. Everything's good. So just go to the cardiologist. And I said, Okay, well, I don't even know why I said this. Because typically, at this point, I trusted doctors, which I no longer do. Except for my new endo is the bomb. But at the time, you know, I said, well, you just send me a copy of the bloodwork. Okay. I just want to know what they were looking at. And she said, Yeah, so I ended up. I came home from work one day of my summer job. And I opened the letter, and it was like, glaring. It was huge, red bolded letters that my I think my fasting blood sugar was 538 or something like that. And of course, I started Googling What the heck is this? Right? And it kept saying over 126 it's like, for sure you're diabetic. And I'm like, well, this

Unknown Speaker 14:55
is like what is x?

Natalie 14:57
Like way over one? So I'm like panic. Right. And we call we call the doctor. And she's like, oh, that can't be right. Let me I'll call you back. Call me back. And she's like, yeah, you need to go to the emergency room.

Scott Benner 15:13
You guys are spot on here really helped me. Well, part of the country did you live in at this time? Natalie, so none of us moved. There was

Natalie 15:20
no move to Napa Valley, California.

Scott Benner 15:25
That's crazy. At least don't get your health care in that vicinity?

Natalie 15:28
No, the craziest thing was that she was a concierge doctor, which is like, you know, you're supposed to, like, only have a few patients and like they're really on it. Right. And he was clearly not on it. Yeah, I spent like four days in the hospital. And, and I ended up with diabetes. And here we are. Okay. Yeah, that really is.

Scott Benner 15:50
That's interesting that they just maybe they thought your heart had diabetes, and not you. Just testing for your heart. If you do wonder how I'm how a number like that would get missed. That's That's insane.

Natalie 16:03
Miss. I mean, it was like, I opened it. And I'm like, it was so obvious, right? And her she said that. So many people come into her practice and think they have diabetes, and they don't. So she's just used to telling people they don't have it.

Scott Benner 16:19
So your diabetes is the is the cry of wolf of practice. Yes. No, it's interesting. So you see, you're diagnosed for reals? And how old are you then? 21. I was 21. Okay, and, and have your other maladies. You say your other maladies have kind of like kind of everything sort of settled in a little bit, I guess like you don't you still are you still gluten free for instance.

Natalie 16:47
I I've been trying to sort of like sneak gluten in there. And it's like gluten does really doesn't like me. So I'm like, you know, at this point, there's so many ways to get around it that I'm cool with it. But yeah, for the most part, I feel so much better. I mean, between being 17 and being 21. Like I was it was like just years of being completely exhausted. And so now I'm almost like grateful that I'm like, diagnosed Finally, because I have so much more energy, I feel so much better. I didn't remember what it felt like to like, feel normal.

Scott Benner 17:29
That's a sentiment I've heard from so many people that you know, I don't want to have this thing but I am so glad to know about it. Because the alternative we are not being treated properly was was just a hell on earth kind of a situation I think, yeah, to maybe go off the path for a second. It's, it's a great time to make the point that it might be a little difficult to stay after your blood sugar a little bit. But you know, an elevated blood sugar will make you not feel well. Whether you are currently using daily insulin injections or traditional tube pump to manage your diabetes. The two part on the pod insulin management system can simplify insulin delivery and help you to live your life on your own terms. You should become part of the potter community. The Potter community has over 100,000 members and it's growing every day. Are you living with Type One Diabetes, type two gestational Leighton auto immune, it doesn't matter. The on the pod system may be a perfect fit for you. And here's how you're going to find out. And by the way, before I tell you how to find out, did you know that the Omni pod is the number one preferred pump for children. But that doesn't mean adults don't love it. You know what you need, you need a completely free, no obligation demo sent to your home and on the pod would love to do that for you. You're going to go to Miami pod.com Ford slash juice box and they're like filling out your name and address and like nothing else. On the pod is gonna send you a free no obligation demo pod today. You can put it on where it and see what you think. I mean, that's a great offer. It's free and there's no obligation and you actually get the hold it touch it, feel it, try it. Nothing better than that. My Omni pod.com forward slash juicebox the links in your show notes at Juicebox podcast.com. And you're well on your way to becoming part of the potter community. Those are these you can hear that my accent is not messing this up like you don't think you're about to join like a Harry Potter group. Right? It's Potter p od D er, um, the pod. I figured you're following along. Let's get back to Natalie.

elevated blood sugar will make you not feel well. And at some point at some point you might get accustomed to it and now you are just having less of an experience being alive than you would if your blood sugar was low. And this addresses as you get you get accustomed to it. And so yeah, you get something taken from you and you almost just accept that it's gone at some point.

Natalie 20:11
Right. And I think that that is why I got so good with me with daily injections because it was like, once I got a like taste of what it felt like to feel good. I was like, Oh, no, no, am I ever going to, you know, run high again or feel that bad again? Yeah, I

Scott Benner 20:39
think I think people undervalue like, I hear a lot. Like I'll put up, I have some posts that I think are fairly popular online about, like, they're just charts of like art and eating Chinese food or pancakes or something like that. Can you see your blood sugar not go over like 110 while she's eating Chinese, you know, for hours and hours, excuse me, making noise over here. It goes on for like hours and hours at a time. And some people are like, get inspired by like, wow, I see what you did. I'm going to try that. And some people and some people get that looks like a lot of work. And I think like would you rather put the effort in like right here in the span of this 10 minutes? or spend the entirety of like the next four and five hours feeling a feeling like hacking and fighting with the blood sugar the whole time? Right? Yeah, a little more insulin little more this might do it. I'll drink some water like all this stuff before you know it. You know, your your endeavor to eat Chinese food at 730 is turned into you up at one o'clock now

Unknown Speaker 21:35
going, Oh, God, I

Scott Benner 21:35
hope I hope I don't get low. Now. I've been giving myself insulin all night or like, whatever it ends up being. And

Natalie 21:41
like, Is it really worth it at that point? Yeah,

Scott Benner 21:44
yeah. And I think it's really valuable. Like by the time this episode goes up, people who are listening are going to have heard probably months ago at this point, like in in podcast time. But Chris Freeman talk about preparation. He's trying to he's trying to cross country skiing. It's like fifth Olympics or something like that. And he talks about how it's possible with preparation. You don't know Natalie, and no one else does. But everyone does by now. That next week, you're going to see an episode go up with the Dodgers pitcher, Brandon Morrow from the the guy who pitched the World Series with Type One Diabetes.

Unknown Speaker 22:19
Oh my god, awesome. He

Scott Benner 22:20
talks about the same thing. When he's talking to me. He calls it I don't know, you didn't call preparation you call it something else. But having a plan, I think but. But you have to put some effort in upfront to get this desired result or at least get closer to your desired result. And that effort can't be looked on as a pain because you have diabetes. Like that's, yeah, like, I'm sorry. You know, you lost the unluckiest lottery in the world, you have type one diabetes, now you're going to have to put more effort in around these situations. If not, everything's going to take more effort. And yeah, you know, you got to decide where you're going to put that effort in? I guess. So. I like the way you're thinking about it. Yeah, I

Natalie 22:59
mean, I just feel like, type one. Community is one of resilience, for sure. Because it's like, you get knocked down all it's like, Who would have thought that like, I could be taken out by a banana.

Unknown Speaker 23:17
It's so dumb. If I

Scott Benner 23:18
don't get any insulin, and I eat this cookie, I'll be dead in six days.

Natalie 23:23
So stupid. So but it's like, you have to, I think that you have Yeah, you have to put in the work. You have to know your body and, and sort of know, you know, sometimes I'm learning with Omni pod, it'll, it'll suggest, you know, however many units for whatever. And sometimes I think to myself, like, Nope, I know, I'm gonna need a little bit more than that, and bump it up. And I think you just sort of know, you start you start to get to know yourself better, and you just have to? Well,

Scott Benner 23:59
I think that what you just said is such a core of like what I'm saying, first of all, you said diabetes is so stupid, which it might be the episode of title, although I was leaning toward Mercury's in retrograde, but

Unknown Speaker 24:11
things are really dumb.

Scott Benner 24:13
Yeah, both diabetes and Mercury, both real and dumb,

Unknown Speaker 24:19
just really dumb.

Scott Benner 24:21
But what you just said is just it's so incredibly important, which is, you know, you said, you know, your pump tells you this, but that the it tells you based on numbers that you or your doctor put in that said, Hey, for every amount of this carbs you eat, this is how much insulin you take. But that's not how your body works. You know, if you didn't have diabetes, say you didn't have diabetes and you picked up a slice of pizza. There's not a process where your brain goes, Oh, that's a slice of pizza. We might as well just give her the 1.635 extra units of insulin right now, out of her pancreas. Your it affects your blood sugar as much as it does and your Body fights it as much as it has to. And that and one of the pitfalls I think that people fall into is that concept of, well, this is this is my basal rate, my basal rates, point six my blood sugar's 160. I don't understand why it's 160. Well, you don't have enough basal insulin right now You haven't eaten in hours. Yeah, and your blood sugar is sitting high, your baseline since not enough. And when you say to somebody, they go, Oh, that makes so much sense. But they don't think about it because the doctor told them. This is your basal rate. So if your blood sugars, I can't be that because we've already decided that's your base rate. And the same thing with insulin to carb ratio, we've already decided that's 30 carbs. And that means you need this much insulin. If I get high afterwards, it can't be that you count the carbs, right? And then that throws you into hours of like questioning yourself questioning the world. You're just like,

Unknown Speaker 25:48
I don't understand.

Scott Benner 25:50
Yeah, I did the right here. Yeah, my system. Is any of that really? In front of me? Am I in the matrix? That kind of stuff? And but but you once you learn to think past that? It really does. I don't know how you find it. But for me, it boils right down to that very simplistic idea that I talked about the time if your blood sugar is high, you don't have enough insulin. Yeah, right. Right. Are you miss timed? Or you don't have enough? Maybe a combination those two and do something about it? Don't sit around for three hours going? I wonder what's going on?

Natalie 26:20
Yeah, huh. Well, I think that one of the most like, the biggest lie that I was told in the hospital, at diagnosis, and I'm sure everybody feels this way, is the biggest lie that I was told in the hospital is basically it's a simple math equation. You calculate the carbs, and you give yourself insulin, and you're good to go. And it's like, it is so far from that.

Unknown Speaker 26:50
It's not even close. I mean,

Natalie 26:53
and so that, and I think that my experience with having this doctor that was garbage made me and I took I had to take everything into my own hands and figure it out myself. So it's like, you know, I think I trust you. I think you really have to trust yourself and say, Yeah, my basal rate is not right. So fix it, or I just, I just went to my endo a couple weeks ago. And it was the first time I'd seen her since getting my pump. And she was looking at my settings. And she's like, Oh, you bump your bazel up like, to, you know, almost doubled during the night. And I said, Yeah, because I was looking at all my decks patterns, and I rise really high during the night. And she's like, well, I can't argue with you because you have a perfect flat line. Thank you. And why

Scott Benner 27:47
did you want to argue with me? But like, what, what was that's the question what Why is her inclination to be like, Oh, this is wrong. What it's, you know what, I would love to ask her that question like, what what made her like, like, get herself like her hackles up and be like, Oh, I have to say something to Natalie about this. Yeah, she's doubling her bazel.

Natalie 28:06
At night. Why is it doubled? And I guess maybe, because most people probably lower it at night? I don't know, I think that I think that it's just such a weird disease that is so individual that I can't imagine. I mean, it's hard to find patterns in my own self, I can't imagine having patients, you know, that are all so different. And trying to find some sort of common theme

Scott Benner 28:35
every 20 minutes when somebody said, someone sits down in your seat, you know, you just said something that I feel like I could talk about for like an hour and try to figure out what it means. Diabetes is such an individual disease. Right? And but if you there's got to be a, there's a reason that that statement is true, or, or not true, right? Because what does that mean? Exactly? Does it mean that let's say your experience with your diabetes is based on your understanding of many variables. If you came into my house and gave your care over to me for a day or two or a week or a month, could I do a better or worse job than you were doing? Maybe I would end up not doing as well as you did. Or maybe like, like the god mean, like everything we accomplish in life is based on our understanding and our and our will to try and you know, all these different like variables, like it's, it really is like, I wonder how individual it is. If it's not, what if it's individual, but it's individual based on not so much the diabetes, but the person and their ability to absorb, understand and put into practice, everything that needs to happen? Didn't mean one point. So it just always strikes me that way. Like I could be wrong, you know what I mean? But, yeah, it just, if there's Um, I don't know If we take two exactly, you know, two cars that are exactly the same, and put two different drivers in it and send them out on a race, one of them's going to get to the end before the other one was that the car was that the driver?

Unknown Speaker 30:13
Like Dino points, you

Scott Benner 30:15
know, I'm saying like, like, yeah. So it. I only say that because I think saying, I think that when people say in the community when they say, well, diabetes is such a personal thing. I get that. But I get scared sometimes that they're using that as an excuse, like, you don't understand my diabetes is so much different than your diabetes. That's why my one c Is this yours is that this is not my fault. It's, it's the diabetes, I got the special kind of Jimmy diabetes, and I'm just like, you've got the gnat diabetes, and so you're not diabetes are way better than my Jimmy diabetes. And so by the way, Jimmy diabetes is almost the episode title at this point. So but, but like, but my point is, is that is that that that's not that's a fair statement, but right, like, but it shouldn't stop it. But it ends up stopping people, it ends up giving them an excuse to stop because, and it's not an excuse, it's they think that they've reached the pinnacle of what they can do. It's that you ever hear anybody say I have brittle diabetes? Wow, you know, that is not an actual medical distinction. But it but it is a well held, firmly understood concept in the in the diabetes world that is accepted by people and doctors. Oh, I have brittle diabetes. I'm in. And I'm sure some people have these horrible versions of you know, their bodies are just a dumpster fire, and everything is worse for them. And that sucks. But then somebody else comes along, who doesn't understand how insulin works, gets real low, after giving themselves way too much insulin and goes, Oh, I'm a brittle diabetic? Well, no, you're not I just didn't didn't use the insulin right. And it's not the it's cool that that happened to them. Like I understand that happening. I just get worried that then the label stops them or get the label stops them from trying to understand it further.

Unknown Speaker 32:17
Right.

Scott Benner 32:20
Let's play a game. what's covered by Medicare is permitted by the FDA to be used with zero finger sticks is available for iPhone. And Android allows you to see a loved one's blood sugar, no matter where they are in the world, and has been an integral part an integral integral integral and has been an integral, oh, I lost the word important. And that's been an important part of how I've kept Arden's agency between 5.6 and 6.2 for over four years. You know what I'm talking about Dexcom, the G six continuous glucose monitor. Did you really not know? You know, he just been nice to me. I appreciate that. You hear every week about how I take the data that comes from ardens Dexcom g six, and I make split second, and sometimes long term decisions about how to adjust her insulin, her basal rates or boluses temp basals these are the ways we bump and nudge. It's no Solitaire. These are the way we bump and we bump and we bump and notch. There's no song there whatsoever. I'm sorry, but that information Wow. Hundred and 78 episodes people What do you want just by the next comment, I can stop doing this. The information sincerely the information that I get back from the CGM from the Dexcom g sex. That's how I decide I'm looking Arden's blood sugar right now. 92 nice and steady after a giant bowl of Apple Jacks. Did I get the first Bolus right now I didn't. But the Dexcom told me that it said, ooh, this is trying to go up and I was able to Bolus more 20 minutes after the initial Bolus, I was able to set a Temp Basal and then shut it off when I needed to. That's what you need this Dexcom for, forget the music, go to dexcom.com forward slash juicebox. Go to the links in my show notes. Go to Juicebox Podcast, go to Juicebox podcast.com and click there. Just try it. Trust me It works even if I've messed this ad completely up.

Natalie 34:25
My mom always said that she had a cousin that was type one that was a brittle diabetic. And then she has she always says well she also would drink Pepsi's all day and smoke cigarettes. And I'm like, she wasn't a brittle diabetic. Like didn't care.

Scott Benner 34:47
Jimmy diabetes that's what he had. Yeah, and so therefore it just look you're gonna be some people who hear this and get mad and I get that but I'm sure but you have to

Natalie 34:58
everybody gets mad at something. If you have

Scott Benner 35:00
to listen to what through what I'm saying here is that like, if you're having these horrible issues, you have to you have to look for other answers, not not say, Oh, I'm just the guy who this doesn't work for

Natalie 35:16
mine is especially hard, right? Well, you can do it this The thing is like, it's gonna be really hard, but like, you definitely can figure it out.

Scott Benner 35:25
Yeah. And you might not be able to figure it out on your own, by the way, in that that's an important distinction

Natalie 35:30
a long time do

Scott Benner 35:32
yeah, and it might take, it might take a long time. But there My point is that very likely, there is a combination of answers that will be that when put together, they they will make your answer to your problem. And and maybe that's impossible to find. Maybe it's difficult to find maybe at the moment, you don't know the right questions to ask or the right people to ask. But don't give up. Because there is a combination there that will work for most people. Now, again, please don't get me wrong. There are some people whose whose health is just at a different space. But that's not most of us. Yeah. Right. And so I just I get, I don't want to fall into the, you know, I talked about on here that doctors sometimes are guilty of doing, like least common denominator teaching where they teach to who they expect is the least intelligent person they're going to see all day, you know what I mean? Or the person who has the least ability to understand diabetes all day, and then everyone gets that basic information. And I don't want the podcast to become that where you're just like, Well, you know, let's only talk about this spot. Because what if there's a person here who doesn't get it, you'll leave them out? I don't want to leave them out. I want to pull them in and tell them look, just get in here and fight once. You know, there's an answer. And I've seen it, Natalie. I've spoken to people privately, and on this podcast who are as lost as lost could be and they find their way out eventually. They just need they just need better. You know, they need better ideas. Something Yeah. and ways to use them. So totally. Yeah. So so I'm sorry. So. So you, you were for a few years using MDI. And you were having a look at we're 30 minutes and we're never gonna get never gonna get to this part. But you felt you said you felt like you were doing really well with them? Yeah. Did you have MDI and a CGM?

Natalie 37:28
No, I was fully old school until just recently. Basically, I got the CGM in March, and then I got the pump in September. But

Scott Benner 37:39
let me ask you one question to that. And then I'm gonna let you roll with this for a second. Were you good at it? Or were you just testing it spots? Were your blood sugar look good. Because I see that people, sometimes some people, people are like, I ate dinner, and gave myself my needle. And four hours later, I tested myself my blood sugar was 90. I'm so good at this. But they don't know what happened for those four hours afterwards.

Natalie 38:01
No, I was good at it. And my agency actually was better on MDI than on my pump. So you're still pumping them? I yeah, that being said, and it's like, my agency on the pump right now is six. So it's not at all I you know, or, you know, crazy high, but on on MDI, it was like 5.6 5.9 5.8. So it's very, it's just, you know, marginally higher on the pump. And that being I, the first couple weeks was trying to figure out all the settings and whatnot. Yeah, but I think being on MDI, so long, I also really had to figure out, like, what certain foods did to me what certain things if I get delayed by x, or whatever, I was always pretty diligent about testing. And I also am, I work out a lot. So I was always testing a lot during the day before working out during and after, and I went through a lot of test strips.

Scott Benner 39:16
And you almost end up acting like your own glucose meter. When you do that to a little bit like your own continuous glucose. Could you start I remember when Arden was younger, and she was on MDI, I would I would go in and I would say the doctor, like don't pay attention to the blood sugars you're seeing on the tests, because I'm testing it really odd times. And why? Because I want to see what's going on. Like, she's like, why would you test a half hour after she ate? I was like, Don't you want to know what's going on a half hour after she says that make sense? Yeah, like, how am I gonna figure this out if I don't see what's happening? And, and they eventually left me alone about it, and stop, you know, but I said instead of saying to me, Hey, you know, you're testing their blood sugar's 300. Here, we should be talking about why it's 300 and how to stop From being 300

Unknown Speaker 40:00
not right,

Scott Benner 40:01
not that I tested it the wrong time. Yeah, you know what I mean? Like, that's

Natalie 40:06
blood sugar is high if you test it or not, right? You know what it's like,

Scott Benner 40:10
it's like when I take a selfie, here's the point. Ready? If I spend enough time, and I hold that camera far enough over my head, like on the ceiling, and and I get my neck and just the right position and the lights right, and I click the thing at the exact right time, Natalie, I

Unknown Speaker 40:27
look thin. Like, it's like,

Scott Benner 40:30
look at me, if everyone could just see me like this all day long. I mean, honestly, I'd probably be a male

Unknown Speaker 40:35
model. Yeah, but

Scott Benner 40:38
that's not what I look like, all the other times. If you were to put that camera on the floor and shoot up at me, that is not what you would say. And so I think that that is a really good, you know, example of like, you can't just test when you know, you look great. Yeah, you know, you have to if you need to really want the truth so that you can make better decisions. Because you will see, periodically, somebody will hold up their meter like online and be like, look at this, I tested six times a day, my blood sugar was always perfect. And I thought I wonder what their blood sugar would look like, if you could see it for 24 hours. You don't me like where are where are they in between those tests? Did they just get lucky and pass at the right time? Did they just know when to test where it worked? where it looks better? Like, are they gaming the system a little bit, you know?

Natalie 41:24
Yeah, and nobody in there is an element of denial where before I had the CGM, like, I can feel when I'm like, a little bit higher. And I'd be like, Oh, I don't even want to know. Like, I just don't even want to know. Yeah, I just, I mean, I still would, but I just be like, Oh, I know. It's gonna be it's gonna be high. And then you know, sure enough, it always. If I had that feeling it was

Scott Benner 41:51
what do you think that feeling is about? Do you think it's about I don't want to be shown for sure that I messed this up. I don't want to have to put more effort into this. And all the cool. What is that part? No.

Natalie 42:03
I don't know. And when I first got to CGM, I was like, I don't know if I'm gonna like being constantly reminded, if I haven't, up if I'm on the rise, or if I'm falling or whatever. Because maybe I don't want it to be so prevalent, like, everything that's going on with me all the time. And if I messed it up, or if I gave too much or not enough or whatever. But, um,

Scott Benner 42:28
so then just a super, super, super simple idea of as I just don't want to deal with this right now. Like,

Natalie 42:33
yeah, and I think being more newly diagnosed, it was like, a god, like, I miss my life where I didn't have to, like know this. Yeah. But then, once I got my decks and everything, it was like, how did I, I don't know how I survived this long without this, because this is the best thing that ever happened.

Scott Benner 42:55
No, I agree. It Listen, in the end, it really does suck down diabetes, like there's no way around it. Nobody's gonna say otherwise. So it's more of a mental leap you have to make it really is like, this is my life. Now let me go have a great life with this

Natalie 43:13
right now. My life is awesome. And I my motto, my diabetes motto is lose the battle win the war. I mean, some days, it's like, some days I lose the battle. And it's like, there is nothing I feel like, some days, I'm just, it's high and it's low, and it's time. And other days. It's great. And it's like, sometimes you just got to lose the battle and win the war.

Scott Benner 43:40
I'm going to tell you, I think that that might be some of the best advice ever. Honestly, I just you can't get stuck on what just happened. It always has to now moving forward. I'm gonna bleep out when you said lose the battle when the bond is put in bold with insulin. So when people hear they'll hear Natalie's voice go. Why diabetes motto was then I'll come in doing girls

Unknown Speaker 44:01
with insulin.

Unknown Speaker 44:06
And then I'll just go back to like a

Unknown Speaker 44:07
computer voice. Yes. Theory. Yeah.

Unknown Speaker 44:13
I don't I don't

Scott Benner 44:14
put that much effort in. Or I would try that just to be funny here. But, but but I think seriously, what you just said is incredibly important. Because when you're talking on the diet on the podcast, like when I'm speaking about this, I'm talking about it in a way that's informative. And so you don't spend a lot of time while you're being informative, telling people then do it wrong. Like, you know, to me, like you're like, Hey, this is what I think could eventually lead to that.

Natalie 44:41
In the middle, like trial and error,

Scott Benner 44:43
right right to trial and error is so important, like try it, but you have to be you have to be willing to see the error as data and not error. It has to be trial and data. You don't mean like oh, I did this I talked about all the time. Like it's simple math. I did a B happened. Next time I'd like to see see happen. So next time I'll try this. And you know, and and you can't burden yourself with like, Oh, I messed it up because you didn't mess it up, you're learning it, you're figuring out or by the way, sometimes it just you're not going to get it right. And that that two's not messing it up, it's just, you have to keep going, if you get mired down in the idea that you're screwing up, this becomes very difficult to do. It becomes very, you know, it's, it can be really depressing at that point, then, you know, then you're gonna burn out then if you keep if you keep focusing on that, that aspect of it. So I just think what you said is really important. And actually, I have a episode coming up in the beginning of the new year, where we're going to talk to somebody who was completely burned out and depressed. Because we don't talk about that enough, either. So

Natalie 45:50
yeah, it happens for sure. Yeah, I

Scott Benner 45:52
don't see how I couldn't. I mean, this morning at four o'clock, I almost just kept like, I should have just walked up on the roof and took a swan dive. I was so tired. I was just like, Oh, God, like, you know what, you're all on your own. Good luck. I'm checking out

Natalie 46:07
Well, one of the reasons I got the decks was because I was starting to get so burnt out on on pricking my finger, because I was doing it so much. That I was like, I my fingers are sore at this point. I just I'm like, I don't want to do it. I just don't.

Scott Benner 46:24
I saw something the other day, like I have to have to get a glucose monitor. This guy said he's like, I can't I just can't do this anymore. I can't stop myself anymore.

Unknown Speaker 46:32
Yeah, it gets old, sucks,

Scott Benner 46:36
gets old quick. Dancing for diabetes is passionately committed to the fight against diabetes, and they will continue to serve until a cure is found. Find out more at dancing for diabetes.com that's dancing the number for diabetes.com for the links in your show notes for Juicebox podcast.com. Like sometimes Arden's like, you know, she's doing her homework, and I'll be like, test and she'll be like, I'm doing my homework. And I'm like, She's like, five minutes, and I'm like, five minutes. I'm like, can you test really quick and she's like, just kind of like, you know what, I just walked over and like, she'll put her hand up in the air. And it's a weird thing, right? Like she's accepting of it. It doesn't stop her from thinking about what she's thinking about. If you told me you were about to, like, snap my finger and make it bleed. I would stop everything I was doing and be like, Oh, my God, oh, my god. I'm like, I don't mean, right. And so please, please, please, please, why is this person doing this, but she's just like, here, go do it. But as it's happening, there's this. I don't know how to describe it except for energy around her. And the energy says to me, I wish this wasn't happening like that. Like it's not, it's just like, I'm doing it because I have to do it. But if there was a way out of this, I'd really like to know what it is right now. And yeah, the technology is getting better and better and better to the point where you have to imagine that someday, you won't need a meter. Like it's not now. I still need one now. But I it's got to be there one day, I hope, you know,

Natalie 48:07
I for sure. I think for sure.

Scott Benner 48:09
Yeah. Because I did talk to the doctor. I forgot his name just fell right out of my head. But the genteel lancing device, a gentleman who made that he was Oh, yeah, I was on a few episodes ago. And that that's nice, but it's probably not for everybody. No, because diabetes is an individual disease. As we said earlier, it's not for everybody, but that might be one option. But it's just in the end, whether it's done by suction, or it's done by it's just it's a pain in the butt. It's thanks, Sam. angry,

Natalie 48:38
cat hurts, and it's annoying. Yeah.

Scott Benner 48:41
Right. So you were testing it weird times and giving yourself the same kind of concept that a glucose monitor would give you? And yeah, you're actually able to? So were you pre, we're just gonna call it Pre-Bolus. And even though you were doing it with needles, but were you giving yourself in some prior to meals, you know, would you test them a little later and find out? Oh, I'm still high and inject again, like, how did you handle it?

Natalie 49:02
Yeah, so. So I didn't realize until I got the pump, but I was essentially like, mimicking what you can do with the pump so much, you know, easier.

Unknown Speaker 49:15
So

Natalie 49:17
I would give, I would test my blood sugar and give myself a Pre-Bolus based on what I what I was going to eat and what my blood sugar was at the time, right? However, if I was more if I was like, if I was over 100 I would do the Pre-Bolus if I was like closer to 80 then I would Bolus it right before eating.

Scott Benner 49:43
Okay, um, but does that make you high then even though cuz I just had this conversation. My wife the other day, she was like, Well, she's 75 so I didn't Pre-Bolus I'm like, That doesn't matter. Be benign. I

Natalie 49:55
mean, yeah. So for me typically No, because and This is where I'm saying the MDI is a lot of work. But you can totally do it is. So then after eating shortly after, I would give myself like one more unit, just like, knock it back with one unit, right. And then, so basically, I was doing an extended bolus

Unknown Speaker 50:19
when needed needles

Natalie 50:20
with needles, right. And the other trick that I have that I'm sure if any endo is listening, they're going to be like, What is she talking about? But I would get syringes. And this is all just me treating myself like a science experiment. I would get syringes. And let's say I needed you know, four units. But my fourth unit, I would, I would need, like, more towards the end of the meal. So I would stop from going high later. Okay. I would do like three units, I would drop three units of humalog, right. You know, in a syringe, and then I would pull up like a unit of regular insulin, like old school regular, okay. Because it peaks way later. So I would mix them and give myself an injection of the concoction. Yeah. Oh, my God. Does that work?

Scott Benner 51:32
She'd been making a little of how did you get them to give you all that different insulin? Would they just they were cool with it.

Natalie 51:38
I think my endo like, he thinks I'm insane. But she finds me entertaining, I think. So I said, you know, I've been researching and I and I know that regular insulin takes longer to peak. And sometimes after I eat like a steak or something, I get a delayed bike, like the protein spike for me is like a couple hours later. And I was like, What if I just tried a regular and she was like, I mean, whatever to what you want

Scott Benner 52:11
to get out of here.

Natalie 52:12
It's like if she it was, I think you can even get it over the counter. And like, I don't know, if they you I think they use it for like dogs and stuff.

Scott Benner 52:23
I have to tell you it as you were explaining it in my mind. here's, here's what I pictured. You draw up four units of insulin, you stick the needle in your arm, you push them three, then the needle just hangs in your arm for an hour, then you push the other unit. I was like, is that what she's gonna say? Cuz that would be

Natalie 52:39
insane. That would be really insane. But that's not what I'm talking about. No, give yourself a full injection. But

Scott Benner 52:47
it's a mix of these two insolence. Yeah,

Natalie 52:49
yeah. Because the peak time is different. It would cover me for and I would get the best flatline. And once I got the AGM, then I really could see like, oh, man, you've got to do you've got to throw in that unit or to have regular.

Scott Benner 53:07
That was holding that now did that information that you got back from that experiment that does that inform how you're using a pump now?

Natalie 53:15
Totally. Yeah, right. Oh, yeah. Especially on things with better like, for me higher things with like higher fat. So Indian food, for example. Every time I eat Indian food, like three hours later, I'll spike. I'll be like, move sailin all through Indian food. And then three hours later. I think the fast slows down the absorption. Right?

Scott Benner 53:40
I was just talking to the to the mother of a child privately the other day. Hey, Deepa, if you're listening, and she was saying the same thing, she's like, oh, Indian food is so hard on my son. And and that's where they were struggling with. It's it's just interesting. You brought that up, and I just somebody else just said it to me two days ago.

Natalie 53:57
Yeah, it's my favorite food in the world. So I have like figured it out now. And if you're on MDI, you like I swear, the regular is the way to do it. But yeah, for on my pump, I do the same thing. It's like, I'll give myself less of upfront insulin, and then bump my basal rate up and or do it you know, do a Temp Basal and then extend it for like three hours and put most of it on the extended end of it. And I think that's where I'm saying that diabetes is so individual because I think certain foods affect people differently and you know, for sure, and stuff like that. So for me

Scott Benner 54:45
that that works for you. But I will say this, like, I'm looking up now, Arden's blood sugar's 97. She's going to need to Pre-Bolus for lunch in 30 minutes, and I'm still hoping she gets a little lower. I appreciate I Pre-Bolus yesterday, I think she was 78, before lunch, and we at 20 minutes before I really couldn't give her insulin then she was like in class. So I just did an extended bolus with nothing up front. So it was like zero percent. Now the rest of it over, you know, a half an hour so that by the time she got there, 20 minutes later, most of it was already in, but not all of it was active, and then the rest of it was in and became active. That's one way to do it. Sometimes all. You know, if she's a little higher, I'll I'll give her more up front extended out over an hour. And if an hour later, I mean, this year at school. Her vibe has been about an hour and 10 minutes after we do that Pre-Bolus it's possible she'll head up and then we just as soon as as soon as we say it, there's more insulin so so yeah, if she, if she gets insulin at 11:20am. And at some sort of extended bolus, and at 1230 she's 120. Diagonal up, I bolus more. Because for sure, because I've seen I've seen blood sugars done I've seen mealtime insulin given perfectly and when it is given perfectly, your blood sugar does not move. And so if it's moving, you missed a little bit now, here's the interesting, I'm gonna take a drink because this is going to be me talking for a second. Okay, so Natalie just said something. I want to circle back to right. And let me see if I can focus my mind. Oh my god, it's gone. This is what happens when you get older Natalie, try to avoid age if you can. re engineer this conversation. So is this. How did the drink throw me off? Not? What happened? I was worried about the ice making noise. Let's go backwards in time we'll try to go. What happened? Okay, then I was gonna turn and say, Okay, I remember what it was. I did it.

Unknown Speaker 56:56
Crap.

Scott Benner 56:57
Thank you so much. So you were talking earlier about, about like, you know, I took a unit of this and they mix it with change that what I heard, because I've got so much experience talking to other people about diabetes. I hear all the voices of the people listening going well, wait, how much did she use? And how long before? And then how much? And they because you people listening? You still want an answer you want like, one you want you want someone to tell you? Here's a point where you put in two minutes Wait, what it's got, say at 120? people's is going to how much does evals Stop worrying about that. Listen to the spirit of what Natalie said she was an adventure. She was like, Look, I'm gonna try something here. You're mixing regular with with, with, you know, humor blog and all this stuff like that is like, that is a person who's like, I wonder what's on the other side of that mountain range? Let's go find out. You know, and and that's the takeaway, if everyone listening, the takeaway from what Natalie said, Isn't the exact amount of insulin she is. It's that she tried that she was like, Hey, I wonder what this will do. Because so much of what's holding you back and talking to the people listening now. So much of what's holding you back is yourself is the idea that someone told me this. And I think this is the rule. So I don't want to buck the rule. But I feel in my gut that it's not like I can tell it's not but I can't make myself break free and try. I tell people all the time, you know, when I'm talking to them privately, and they're like, Well, okay, so you're saying more than so at that point? I'm like, Yes, then they're very next question is always How much? And I always say, I don't know, I figure that out. Yeah, there's no, there's no magic number. Do you think there's a calculator here that someone didn't share with you? You know what I mean? Like, more blood sugars higher, more. And that's why I started talking about like, if you have a dexcom, I talked about, like stopping the arrow. Like when I see the arrow, I think I need to stop the arrow. And how much time does that I don't know as much as it

Natalie 58:52
takes to stop it. And that's another thing that sort of is intuitive. And I from listening to the podcast. And and I've heard you say, you know, right, when you see that arrow, just sort of like bump it down. And that's like some of the best advice that I've gotten from from listening to your podcasts because there's been times where I see the arrow, and I'll just, even if it's like, even if I'm like, it's like 107 or something and I just eaten but there's a little thing, I'll just say, I'll throw in a throw in a happy unit and like see what happens. Or I'll just, you know, bump my Temp Basal up for a minute and sort of like, see how this goes. And it always knocked me right back in. And

Scott Benner 59:41
so there's two things here. First of all, everyone erring on the side of caution most of the time you end up needing more insulin than you think anyway. And you know, yeah, you can always Bolus using the juice box theory, which is not specific to the to the show, but to the idea of there was this time That delete ups not important but Artem was getting high at a sporting event from adrenaline. And it is difficult to talk yourself into bolusing you're, you know, back then eight or nine year old when she walks into a gymnasium to play basketball in her blood sugar's 100. It was hard to tell yourself her adrenaline's gonna kick in in 10 minutes, and she's going to have needed insulin. It is hard to make that decision to Bolus a 100 and then send somebody out to do something. So one day, I realized, look, I'm seeing this happen every time I have to do something. How can I decide how much insulin to use? And then I said, Oh, I'll bolus the amount I know a juice box can catch. And then I just said, okay, that back then it was like a unit and a half. I was like, here's a unit and a half. And sure enough, the adrenaline tried to kick in, but the unit and a half was working and it worked. And I wasn't gay. But my my safety net was the juice box theory, which was if this goes wrong, I'll just give her the juice box.

Natalie 1:00:58
totally right. Yeah, if it goes wrong, my juice box is a roll of Smarties.

Unknown Speaker 1:01:04
There you go. Nice. I'm

Natalie 1:01:05
like because sometimes I'm like, Huh, if this goes terribly wrong, half a roll of Smarties. We'll fix it. Right?

Scott Benner 1:01:12
See Natalie has the smartest theory. I have the juice box theory. Yeah. And you at home should have your own adventure. Yes, exactly. It's like Dragon's Lair. Except you don't always die. Oh, boy. Yeah, so you bet but there's like five old people are like I remember dragons. I was terrible video. Yeah. But but you're just like, I'm gonna say yes, but I don't know what the hell Dragon's Lair is. But but you know that that's such an, it's such an important idea. Like, figure out what your Smarties are, you know, figure out where how you can do this. It's, you have to trust yourself and try things. You can't just sit back and wait for someone to tell you. Hey, this is the spot 23 minutes, 23 minutes and 18 seconds after this. You need to put in 1.4759 units, like no arm, you're never gonna get that answer. Just figure it out. You have to try Don't be scared. You can't be afraid to get a try. You know you got a you got to throw yourself into it. And test you know, don't be Don't be silly. Don't start giving yourself a ton of insulin like on this is probably okay. You know, if you don't have a C if you don't have a CGM. If you don't have a dexcom, then test if you have a dexcom. Pay attention to it. Test still if you feel like you have to. But you can't just sit back and hope that someone's gonna give you some static answer. There are almost literally no static answers in diabetes.

Natalie 1:02:30
No, and then it's always right. When you figure it out. It's like you get a curveball.

Unknown Speaker 1:02:33
Yeah, absolutely.

Natalie 1:02:35
So another thing that really helped me was with my basal insulin, when I was doing MDI, actually bleeding the dose. So a lot of people you know, you take 16 units or whatever, at night, or however many units you need, right at night, you just take it all, or in the morning, whatever time you usually take it, you take the whole thing. But I learned that splitting it in half and taking for me one in the morning, one at night was so like, I had such a better wine. And yeah, it's just like a straight. Whereas if I took it all at night, then maybe at three o'clock in the afternoon, the next day, I would go a little higher or whatever. So splitting your dose of whatever you take your Seba, lantis, or whatever you're on. I think that

Scott Benner 1:03:40
really helped. We did that too, with our despite what your package insert says that insulin doesn't last 24 hours. So now, which is how you end up with a low at some point, you have to think of that slow acting insulin as like a bank account of insulin, you you know, you inject it all and it crystallizes under your skin. And then for the lack of a more specific term, it melts away slowly holding down your blood sugar. But there are moments when it can, you know, melt away quicker or slower or too soon. And then, you know, you hear a lot of people say oh, like, you know, I take my slow acting insulin in the morning. But, you know, I start getting high about 20 hours later, but it's because this lighting is on it's pretty much gone. Yeah. So split it up. So it's always there. Yeah. And you don't have to change your dose. By the way, when you do that, like in your example of 16. It might not end up being eight Nate. It could end up being more or less it could be end up being more on one side and less than the other side. But

Natalie 1:04:40
I can also I think the other thing is pay attention to if you're running high for a couple days and got bumped, bump up your units. Don't be like well, I'm supposed to be 20 units. So it's like maybe you need 26 units. I don't know you know,

Unknown Speaker 1:04:59
yeah, it now Well, let's

Scott Benner 1:05:00
have a back to what I said if your blood sugar is high, you need more insulin. It's just right. All right, listen, Arden's last, her next endo appointment coming up whenever it ends up being whatever a one sees gonna be. This is the time if her a one sees not higher and significantly higher than her last one because our last one was five, six that one was like I walked out there I was like, we're never doing that again. And you know, and so but but her she's been growing exponentially, so she's getting taller and stronger. And like this is all happening like very quickly. And I am it's the point where I always hear people go Oh, wait, wait, oh, puberty comes and everything's gonna get out of whack. Everything didn't get out of whack. Like I'm gonna I'm gonna lay it on the line right now. I'm bet bet right now, that her hurry once he's going to go up, but it's not gonna like leave the sixes

Unknown Speaker 1:05:49
later. So

Scott Benner 1:05:49
yeah, that when that happens, that's when you're like, oh, high blood sugar. Again, I guess I'm not going to do anything about it. I've just been fighting more with it. I haven't had as many. Like I'm looking at Arden's line right now. I can actually click on it here. Her last six hours. look like she doesn't have diabetes. And I'm more often than not was able to accomplish that. In the past this last three months. It's not so much there's been spikes, and they've hung for a little bit. And I've had to be really aggressive with them and come back at them. But keep in mind what that means is that like, you know, when I say to you like orange vulture got out of hand, I'm talking about like, I was like, 160

Natalie 1:06:30
Yeah, that's I feel the same way. I'm like, oh, man, I'm so high. And then it's like, it's like 155 and other people are like, Oh, I feel great at 155. But you don't know what 80 feels like? Because 80 feels magical. Yeah. Magic. Yes.

Scott Benner 1:06:45
That's a great example. If you know, I don't know what my blood sugar is right now. But it's probably not over 90, right? So I don't have diabetes. So if you're if you're running around, go my blood sugar's 180. Yours is double what mine is. And you know, and

Unknown Speaker 1:07:00
smells like garbage.

Scott Benner 1:07:02
Yeah, it just slows everything down. Right? Like you feel crappy. Natalie, we've gone over now. Oh, my gosh, talking to me, just it's magical goes by. So experience is true. I like the way you said that. I want you to know right now, I'm leaning very heavily towards calling this episode Jimmy diabetes. And I don't know what's going to happen in the end. Because when I go back and edit it, I could be inspired by something else you've said. But at the moment, I have a strong feeling about me diabetes.

Natalie 1:07:36
Oh, God, go with your gut.

Scott Benner 1:07:38
Thank you. Wonderful, excellent. So I'm gonna say goodbye. And thank you for coming on, then I'm going to say goodbye like a real person after I stopped the recording. So really appreciate you coming on and sharing your life with type one. It means a lot to people. Everybody does the same thing when they go to come on the podcast sick. Well, I don't have anything to say. Or I don't know if what I'm going to say is going to be valuable. But I want everyone listening to know that everyone who you've enjoyed listening to on the podcast, thinks that they go

Unknown Speaker 1:08:08
Well, yeah, you know.

Natalie 1:08:10
Yeah. Well, thanks for having me. And I hope that I hope that if anybody's on MDI listening, that will somehow help because, you know, I just want everybody to feel good. So

Scott Benner 1:08:27
it really is it right, once you know how it feels to feel good, you really do want it for everybody else. You just think Oh, I wish I wish I could explain this to other people. Do you talk about diabetes on your Instagram, which I think is where we met?

Natalie 1:08:39
I don't really I do sometimes. But I'm just not that. I don't know. I think I would like have a whole separate account because I could talk about it all day long. I don't you know, I am. I'm not ashamed of it or anything. I just don't really talk about it that much. Yeah. I know what you mean. Also, it's obviously a huge part of my life, but it's also not my life, right? It's a very small part who I

Unknown Speaker 1:09:09
am. Yeah,

Unknown Speaker 1:09:11
yeah.

Scott Benner 1:09:11
It's just last night. Arden. Arden met somebody online. And on an Instagram, it's a person her age, and who has diabetes. And I actually, I know they talk and I said to her last night, I was like, How did you meet this person? She goes, I don't know. I think maybe they found you first, like the podcast or something. And then through Instagram figured out that, you know, you're not Arden and then figured out where I was. And she's like, I really like this person. They have a really nice relationship and everything. But then she said, I said oh, because I thought you just found her. She was no no she goes but she is one of those people has tea one day in her profile. And I was like, Oh, it was such an interesting statement. Like she's one of those people who puts T one day in her profile because Arden never hides her diabetes. Like, you'll see pictures of Arden all over the place. If she takes a picture and her pumps in it, she doesn't think twice about that effort. She doesn't Dexcom stick it on her head while she's never thinks twice about and yet never talks about diabetes. So it's interesting how her I don't know. Like, she's not an advocate on our own, but sometimes just living, you can be an advocate just by being yourself out in the world. You don't have to specifically talk about it, I guess. Yeah, it's just a very,

Natalie 1:10:30
I mean, I guess for me, it's like, it's like, you know, my eyes are blue. I don't put in my profile. I have blue eyes. It's like, I just do you know what I mean?

Scott Benner 1:10:41
That's, it's just I'm glad we answered with that. Because that's, it's, I think it's an interesting distinction. So, all right, I'm gonna say goodbye right here. All right. Thank you, Natalie, for coming on the show and sharing your life with Type One Diabetes. Thank you dancing for diabetes. Thank you. Dexcom. Thank you on the pod. You can check out all the sponsors at Juicebox podcast.com. Or use the links that are in your show notes.


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#177 Ella Builds Bridges

Scott Benner

Cry a river, build a bridge...

Ella lives with type 1 diabetes and so many other medical conditions that I can't list them all. Her spirit and determination is the stuff of legends. This is her story....

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexagoogle play/android - iheart radio -  or their favorite podcast app.

You can check out Ella's blog but you should definitey find her on Facebook or YouTube

+ 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
Hello and welcome to Episode 177 of the Juicebox Podcast. Today's show is sponsored by Omni pod, the tubeless insulin pump that Arden has been wearing for a decade. And by Dexcom, makers of the G six continuous glucose monitor now FDA permitted for zero finger sticks.

I'm at a bit of a loss for how to describe today's episode because it is incredibly uplifting, but at the same time, it could be difficult to listen to at times. Today I speak with Ella. She's a young person in her 20s, who has type one diabetes, but who also has a host of other medical conditions. As you listen to Ella describe her day and what she needs to do to stay healthy and safe. It's going to be it's going to be a little overwhelming for you. But I think Ella's life offers a perspective that would be difficult for many of us to gain. So I hope you listen. She's really a rather remarkable person. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making changes to your medical plan.

Ella 1:25
My name is Ella, I'm 23 years old. I've had Type One Diabetes since September 26 1997. And I have some other complex health conditions. But aside from those, I have a lot of hobbies that I love to do. And one of them is volunteering. I love volunteering at any opportunity I get either the Red Cross at a gay or F anything I can do, or just helping a friend in need out. That's what I love to do. And I'd love for it. I live for helping other people. And I also love rock climbing. And before I got sick, I love swimming. Well, I

Scott Benner 2:16
definitely get the sense from you online that you're a person who likes to help other people.

Unknown Speaker 2:21
Yeah, I

Scott Benner 2:21
don't understand climbing up rocks. That seems insane. But I'm happy for you if you love it. And I'm going to ask you later why you don't love swimming as much since you have been diagnosed. But first, I guess Let me start by saying this. I don't we don't know each other You and I, I'm aware of you. I'm aware of you through Facebook. That's how I'm aware of who you are. Right? Yeah, what I would say is that, you know, social media is really interesting. You know, you hear people say all the time, like, you only see the best of people on Facebook. Right? Right, they take 17 pictures of themselves before they get the exact right angle and, and that's the one you see. And you know, if their kid, their kid does something in a sport, they don't show you the six things, they mess up just the one thing they did that was really good. And, and, to me, that's just a bigger idea that you know, we don't spend, we don't, we don't share every split second of our lives, we're just sharing the stuff we think other people might be interested in, or we're interested in other people knowing about. Having said that, from my perspective, considering that if you posted 100 times a month, and I don't know how many times you do that, I would probably only see it a handful of times anyway, because of the way the Facebook works and everything. I have a very slim idea of who you are from this. But it does seem to me that you are in and out of different situations that are probably not optimal health wise, like I see you in the hospital a lot. Or you're in need of help or things like that. And so we're gonna really kind of drill down and understand why that is, and and why you're so open about sharing about it and stuff like that. So it's really it's excellent. So let's let's start slow. You were diagnosed, I did some fast math while you were talking. Were you 11 years old.

Ella 4:06
I was 926 97. So I was two years old.

Scott Benner 4:11
My math is terrible. So all right. I might have heard 2007 which would have made more sense with my answer. Anyway.

Unknown Speaker 4:21
Sorry.

Scott Benner 4:22
No, don't be sorry. It's my fault. I'm terrible. So two years old, which is how old my daughter was when she was diagnosed. Wow, where were you living? It's time do you have you? Do you live in America? Wow. And have you ever lived overseas? Okay, so where were you when you were diagnosed?

Unknown Speaker 4:40
Um

Ella 4:44
I was so little. It was like right after my parents got divorced. Okay, so I'm not sure

Scott Benner 4:53
I understand that. Who you living with at the time? Is it your mom, your dad are you splitting time

Unknown Speaker 4:58
um,

Ella 5:00
We I live, where we live, it's my mom and my grandma. My mom had to work all the time. So my grandma would drive us call appointments and kind of raise us. And my mom would, you know, do it, she could

Scott Benner 5:19
sit down. So was your grandmother kind of your primary caregiver for diabetes in their life? She was.

Ella 5:24
My grandma was my grandma. But was the role of a full time mom for me. Okay. I lost her three days before my 14th birthday before your 14th birthday.

Scott Benner 5:38
Yeah. Wow. Okay, so now, so she's your primary, like, you know, caregiver for diabetes and in life in general. So you like losing your mom, I would imagine. And were you self sufficient with your diabetes at 14 or no did that really kind of throw things into,

Ella 5:55
I had to learn everything by the time I was seven. So at seven years old, I started checking my blood sugar about myself when I was like three or four. And I started being able to do my own injections at age seven, actually, after diabetes camp. So after diabetes camp, the thing about Canvas, what's so amazing, is you're having fun, but you're learning at the same time. And so kids will, you know, go to camp on a Sunday. And by that Friday, I mean, you have someone they're doing their own injections, they're changing their own pump site, they're able to calculate their dose. So you know, one or the other, all three, or whatever is on but that's the beautiful thing about camp and camp taught me not just how to manage my diabetes, it also gave me every skill I really was going to need in life, from being able to overcome any challenge that lay before you and to working as a team to just know that you're not alone. And that even if you feel like you're the only person in the world who feels a certain way, chances are you're not

Scott Benner 7:24
that's a real confidence that you it's hard to kind of gain on your own sometimes. And it's it's so much easier to get it from somebody else who already kind of knows what you're going through and is able to kind of mirror it back to you. So, yeah, okay, so alright, so two years old. 20 some years ago, obviously, not a lot of technology going on probably at the time, and yet a meter, I'm guessing ish.

Unknown Speaker 7:47
Oh, my God.

Ella 7:49
Oh, sorry. No, no, no, no, was it a crazy meter did it was it though, it was the accucheck. I can't remember what it looks like. But I don't know, it's called but it took 45 seconds. For a meter results, 45 seconds. And you had to have this little like, kit, hard thing to put in the meter, because they didn't have the codes that you would scroll to for those of anyone who's newly diagnosed or newer to type one. Back in the day before they had all these meters that were that

Scott Benner 8:35
that service, you know, like coded to the strip's right, like,

Ella 8:38
yeah, like you had to put in like code 25. For one touch, we had to put in code 16 for freestyle. And back in that day, you couldn't even just scroll up or down to the code, you had to actually take the soul, the soul chip card, and put it in the meter. And you could only use those strips with that sim chip card thing. And I was on, I'm allergic to a lot of insulin. So I was on. I honestly don't know what the long acting was, um, but I was on an evil log pretty quickly, because I did not respond well to regular. Um, and then in 2000, I remember in kindergarten, that was like the big thing and I we were we went on lantis. And that was so different, because we could eat whenever we wanted. We just had to take take a shot, but it did mean a lot more hot. So I was on that until I was 13. And then on January 29 2008, I actually began pumping with the Omni pod.

Scott Benner 9:54
Okay, so now, yeah, that's great. Well, first of all, I what I heard was how exciting it was in kindergarten to be on lantis, which is not. It's not. It's not everybody's kindergarten excitement story, that's for sure. But it did open up your life. So that's pretty cool. So, okay, so how did you find? Like those first years living with type one? Do you? Did you feel burdened by it? Or was it just kind of how things were for you? How did you kind of react to it?

Unknown Speaker 10:24
Um,

Ella 10:27
I don't really know cuz I was too. But as you got older, as I got older, I, I've just always been really in tune with my body. And I've always have had an advanced, like, extreme amount of research. since a young age, like I was that kid that would come home, get off the ball, get on the computer and start doing research.

Scott Benner 10:59
Just trying to feel not just trying to figure out things that would help you or things that would benefit your health or like that kind of just trying to understand the whole thing in a greater detail.

Ella 11:09
I wanted to be a nurse from like, I just knew, like my whole life, I just knew that I was destined to be a nurse, my grandma was a nurse, and all my grandfather was a quadriplegic. So growing up, I often would have to help a care for my grandpa, and I loved it. Um, so when I was little, I would like to do research, not just on diabetes products, but I also do research on its medical conditions, like leukemias, like the cancers and some rare chromosomal design. So

Scott Benner 11:50
you were just trying to figure out like, medical stuff in general, you're just really interested by it all. I just wanted to learn. That's cool. That's excellent. So all right. Now, you're not a nurse now, I would imagine, right? Yeah. So tell me what happened. So what was your first complication with diabetes?

Ella 12:11
So that's an interesting one, my agencies were, they have been in IE, six, like six point size 7.7 range for the past 10 plus years. When I was little, and I was on injections. I had ainley, eight and a couple nine. But those are few and far between. And a lot of that reason was not there just impossible to meet my medical needs. I know a lot of people are pretty good with MTI. But the pump made a huge difference. And that it's actually been a life changing for me, and I would never go back. I was getting ready for Rn school. It was August 2014. And it was going to be my second year of college. And I went from never having a hospital admit, really never go into the hospital. Not just like no er trips, no ad met nothing. until suddenly on August 11 2014. My blood sugar was really high and I had like small pea ketones, but it didn't matter how much I was drinking. I kept throwing up and throwing up and throwing up. We went to the hospital at that point. Because I was scared I was gonna go into DK and and that at that point, that was the I was admitted that night. I was just the first of many.

Scott Benner 14:00
I was just standing last night with former Major League Baseball player Sam fold. Sam's had Type One Diabetes since he was 10 years old. One of the first things he did when he saw me was yank up his shirt show me his new Dexcom gs six continuous glucose monitor. He said it It changed his life. But this ad is not about the Dexcom it's about beyond the pod. Because I said to Sam, what's next? You're gonna get a pump? And he said, Yeah, I think so. And I told Sam the same exact thing I'm gonna tell you right now. You should look into it on the pod. I told Sam that Arden has been wearing an omni pod for a decade since she was four years old. She just turned 14 the other day. She's never once felt constricted with tubing or held back from swimming or showering. It's absolutely spectacular. Each and every day we use the functions on the on the pod tubeless insulin pump to make adjustments to ardens bazel rates or boluses it is absolutely 100% the key the focus, the CI and the now of how we have kept ardens 8172 5.6 and 6.24 now over four years, that's what I told Sam fold. That's what I'm telling you go to my Omni pod.com Ford slash juice box or click on the links in your show notes, or Juicebox podcast.com to get a free no obligation demo pod sent to you directly at your home. That's right on the pod. We'll send you a pod that you can try on where see feel touch, love. caress even I don't know what you're gonna do with it once you get it there. But you'll be able to try it, wear it and see what you think. And then if you want to move forward on the pod makes the entire process super simple. Miami pod.com forward slash juicebox with the links in your show notes or Juicebox podcast.com Hey on the pod I bet you didn't think you were gonna get a small dog snoring behind your ad. Huh? You guys hear Basal Today he is really starting up a store. Okay, let's get back to Ella hear about her first time going to the hospital and the many visits that followed

Ella 15:59
was just the first column of many. I was diagnosed and began my journey with Gasser freezes on August 11 2014.

Scott Benner 16:12
So you're going along for you know, 18 years maybe right in that range, like like just cruising along, even when you're a one sees weren't where you wanted them with MDI. They weren't terrible. They were still respectable a one sees you on a pump. Yeah, down, everything looks like it's going well, you're heading into college. And suddenly this happens. Is it fair to say that it's an is it? Has it been a, like an absolute, like, kind of like, left turn? Like did your life completely change at that point? Yeah, they did. Yeah. And so I guess so like, let's talk first about, you know, not about gastroparesis. So basically, I, we just did an episode recently with someone who else who spin talk, who was talking about their complications, the call. And so there's, um, it's nerve damage, but through your digestive system, is that yeah, that's the beginning of the idea. Right. But then tell me what how does that affect things with diabetes?

Ella 17:09
Yeah, that's what I really wanted to share. Yeah, about. So and just this thing, you know, I have not been declared whether it's complications, or it's a secondary condition. And I can get into that after I touch up on the Yes, or phrases and how it affects my diabetes. Okay, so I would describe them as Gasser versus as having the stomach flu every day for the rest of your life. So I go through periods of time where I can't hold anything down. And I end up having to be on IV nutrition, or bonds. And I actually have a central line. So I have a port in my left side of my chest, and I have a needle that goes in there every week. And that just it's called accessing my port. So in addition to my insulin pump, site change, and my Dexcom change, I have to do my IV fork needle once a week. And I will say this, iPhone diabetes was completely manageable. And I could live very freely with it. When you add guests or freezes to it.

Unknown Speaker 18:42
It's

Ella 18:44
honestly, it's a night it at first, it's a nightmare until you can adapt. So, for example, when my blood sugar goes high, I can't just drink a bunch of water and take a shot, do a site change for a high, that means I got to do a blood sugar check. I got to do a blood ketone check. I have to get insulin on board and I have to get a bag of IV fluids on and go wide open meaning like the staff, it gets into me as fast as it can.

Scott Benner 19:21
Why does all Why do all those extra things become necessary? Why Why doesn't just insulin do it at that point.

Ella 19:29
I'm prone to dehydration. So I have to wear my IV pump. Almost 24 seven, because I'm on continuous IV fluids. But sorry about

Unknown Speaker 19:46
clearing my throat you Sorry,

Unknown Speaker 19:47
I find that

Unknown Speaker 19:52
I

Ella 19:54
it really just treat with insulin. Now. This isn't every high But if I'm having a, you know, 250 plus and I'm, or if I'm 200. And I'm just rising really quickly, I'd like to actually, I really like, do. I really like to be bold with insulin and fluids, because a lot of times I like to be free, like, proactive, instead of reactive, right? Because it just makes everything so much easier. And with the dex comm, I'm able to see where I'm trending. And that is super helpful, because that actually changed to the changes, of course, the treatment plan. But as far as that IV fluids, um, and the reason I have to be so aggressive with those, especially my blood sugar's going high, is because I'm prone to ek, and metabolic acidosis. And so, I duration is a huge thing.

Scott Benner 21:13
Okay. And so, let me jump in for a second because I want to make sure I don't get lost, because I think I'm keeping up. So she's, no, no, no, you're doing good. You really are. So you have a constant IV available to like you can when you hang a bag, you can just do it. It's not like you have to get a needle then at the same time. Is that right?

Ella 21:33
Right. I just can't get once a week.

Scott Benner 21:35
Okay, so so when you you're cocky, when you're bold when you're when you're aggressive. When your blood sugar starts jumping like that, you need to get insulin and you got to make sure that you're hydrated you to check your ketones, because when it goes bad, it goes bad all at once. And really drastically. And yeah, and you don't know. Yeah. And when you don't know which one of those elevated blood sugars is going to lead to that which one is just going to come down and be okay again. Yeah, okay. All right. Okay, I think I understand that part. Now. So how about how does that how did the highs happen? Are they because Is it because of the difficulty understanding when your body is actually going to digest what you've eaten? And whether or not like because I'm assuming, I'm assuming like, your your variables are crazy, right? Like you could eat diets and get sick and and then you wouldn't have the food in your system, or it could go in and not process for a really long time. And then if you put the insulin right, then the insulin might be way Miss timed with when the when your body actually starts processing the food? How do ya how do you make those decisions? How do you make any of those decisions.

Unknown Speaker 22:46
Uh,

Ella 22:47
I don't eat much. Um, it just depends on if I'm in a flare. So a flare means like, when my stomach is totally not accepting food, it'll throw up everything, either an ice cube sometimes when I am able to eat, I do have limited intake. But a lot of times it doesn't really hit my system. So I end up kind of bolusing hours later. And sometimes I don't even need to bolus sometimes it just, it really doesn't even get to me. If I'm having a lot of carbs though. I might do I call it algorithm bolusing. Okay, so I'll do like a small dose weight of it. That's dose. Wait a bit. Next Oh, sweet of it. But it's not stalking insulin. It's just taking it safely. So if I sell off, I don't have to deal with a really bad load of follow up.

Scott Benner 23:51
Okay. So you're much more in tune with the concept of like, when I talk about timing insulin, you're doing you're doing that on a much bigger explosive level, like drugged out over much more time. How do you even so I, I don't want to bum you out. But it's, the question pops in like, how do you even get up the nerve to want to eat? And

Ella 24:12
honestly, it's evil. our stomachs are evil, because my friends always say that because we can be extremely hungry, but be so nauseous. So sometimes, it's literally a hungry and I'm so nauseous I don't throw off starving or am I hungry? Or am I nauseous? One stomach? What do you want? Like? We never really know if

Scott Benner 24:42
you just got shot. Yeah, and you can't not it's not like you can't you can't not eat but you do get your you do get nutrition through the port weekly.

Ella 24:52
From time from time to time I do go on APN it's called Total parenteral nutrition and that is why I get both nutrition and hydration and like fats and proteins. So on a day to day basis, my body is running off and failing and defies normal sailing. So ah is okay, if I talk about the

Scott Benner 25:21
lows a little. Do please. Yeah. Trust me, you you keep talking because I'm, I'm keeping up in my head, but I'm in my questions aren't coming as fast as they usually do, because I'm processing a lot. So go ahead, please.

Ella 25:33
Okay. So my low blood sugars are so different. And honestly, that's probably one of the biggest hassles. Because you know, when you're low, if you can just drink a juice box and be okay. You're, you know, you're good to go, you can be playing a sport, and, you know, come over here could drink a juice box, maybe some business you need to do for a bit. But then you're good to go with me. I have kind of a different story. So by Lowe's, we start trading my lows under 120. Okay, so I have extremely crazy parameters, my parameters, where we like to be is between 130 and 180. Because the lows hit me so hard, and it's pretty crazy. And I am I am mostly asymptomatic. But the dexcom is key for me, because it has saved my life over 280 something times in the past two years. So when I go low, I have to treat with IV dextrose. So I either have dsst and fuel, which is like this huge syringe filled with super concentrated like IV think of grape juice, like the IV version of breakage. So

Scott Benner 27:06
does it hit you really fast?

Ella 27:08
Um, I have to push it over eight minutes, or else it'll fail my Dexcom. Okay, but it does. It does hit you within about 10 minutes. You're you can talk again and you're good.

Scott Benner 27:23
So if you push it in too quickly, the Dexcom would fail to be able to read

Ella 27:28
Yeah, the Dexcom would do the quest those lovely question mark. And that's a headache and a half and then if I don't calibrate within an hour after dial to see Friday and I'll have to change the whole

Scott Benner 27:42
figure out how to move the dextra since and not cause an element on second Arden's texting about our lunch. Give me one second. I need to ask her how hungry she is. Thank you. We'll just keep recording as we do it. Okay, she's hungry. And let's think about our lunch. Well, it seems like forever ago but way back in Episode 47 of the podcast that is 130 episodes ago, I think. Anyway, a long time ago in the Juicebox Podcast I interviewed then, Oakland Athletics outfielder Sam fold, about type one diabetes. Since then Sam has retired he's now a coach with the Philadelphia Phillies, my hometown Phillies. And last night, I got to go down to a game take my son to see batting practice live on the field. Thanks to Sam. So many, many thanks to Sam. But as you heard in the Omni pod ad, while we were there, Sam yanked up his shirt and showed me his new Dexcom g six continuous glucose monitor. Now if you go back to Episode 47, when I spoke with Sam, he was on shots. He didn't have a CGM. He didn't have a pump. He had nothing. And I told him back then Sandy gotta try. And now he's using the G six. And he said to me, it changed my life, that quickly in a month, he know, how would you like your life to be changed. And I mean for the better in a way that makes baseball players smile. Go to dexcom.com forward slash juicebox. Get into a world where you can make diabetes treatment decisions with zero finger sticks, no calibrations, always know where your glucose number is, and where it's going. That's what the dexcom g six can do for you. It's what it's doing for Sam. It's what it's doing for Arden. It's what it's doing for countless countless people living with Type One Diabetes, be one of them. dexcom.com forward slash juicebox, the links your show notes, or Juicebox podcast.com. By the way, after the baseball season, Sam's going to come back on we're going to talk again.

Okay, she's hungry, and let's think about our lunch. I know what's in there. So I'm going to do this. A lot of units. I have to extend That a little bit not a lot. She's a little harder than I wanted to be right now. So let's do. Let's do 20%. Now

Unknown Speaker 30:12
the rest.

Scott Benner 30:15
Yeah, I was I was impressed with myself when I figured out this stuff, but your thing is way more difficult. How do you figure these things out? I guess because this is not something I would imagine that a doctor just comes in and goes, Oh, here's how you handle this. It's probably a lot. I mean, your trial and error is probably insane. Why?

Ella 30:36
I'm alive, right? Yes.

Scott Benner 30:39
How involved are your doctors and health care people and how much is just on you?

Ella 30:45
It all honestly kind of falls on my shoulders because I find what work and then they're extremely supportive. So we have done we have done a lot of experiments. One of them was actually the we call it g humping glucagon pumping. And so I would take an animal because they deliver one unit per second, it was the fastest delivery system. So I would at one point, I was putting glucagon in my enemas, vide, or in a tank. And wearing that and then just hooking up to Bolus glucagon when my blood sugar would drop. And then of course, wearing my other insulin pump, which would be probably the T slim and just kind of doing it like that. But unfortunately, the glucagon didn't end up working well for me at all. Because when you don't eat by mouth, you don't have the stored glycogen. And what a lot of people don't know is the glucagon. All it does, is it's like sending a text message to your liver saying yo dump the stored glycogen. Because it's not the actual sugar source, it just tries to trigger the liver to dump a stored glycogen to raise the blood sugar. Okay.

Scott Benner 32:13
So if it's not there, if the storage isn't there, then there's nothing Yes. And that's what you found out. We're trying to use glucagon.

Ella 32:20
Yeah, so if you don't eat it, if you can't eat enough by mouth, then glucagon is not going to help you. So that kind of stunk. So then we got to the point where I'd have decent tea on hand at home. And then dsst became like the new glucagon. So what I use on a day to day basis, though, for Lowe's is the five. So that is just a liter of fluid that has 5% dextrose in it. And just like an IV bag, and then that one I just run really quickly for like 250 ML, the Irie summer under juicebox amount of liquid and then I recheck and correct as necessary.

Scott Benner 33:07
And you said that there's you kind of said earlier, I want to make sure we hit it that there's a difference between a complication from type one and just developing another disease. And so, yeah, is there a feeling that this is just a development for you that it's not type one caused or and how would you even know that? I guess

Ella 33:26
my so I don't have your typical peripheral neuropathy and your autonomic neuropathy kind of case. I have multiple organ systems that are affected. So like I have dysautonomia, which is dysfunction of the autonomic nervous system. So my body has a very hard time regulating my heart rate, my temperature, my blood pressure, things along that nature, just vitals, my body does not do very well to adapting to the external environment. So if it's really if it's extremely hot outside, I don't sweat like a typical person, but my body literally cannot tolerate the heat and I just I can pass out very quickly because my body can't regulate it, and it's really hard. That's just one example. Um, so the Gasser precice is just a piece of the puzzle. Does the Vegas nerve. Are you familiar with that?

Scott Benner 34:39
big ol nerve?

Ella 34:40
Yeah, yes. So your vagus nerve extends from your brain down pretty far. And it can affect your stomach and gas or freezes can be part of it. Your heart can be affected your respiratory system can be affected. And, among other things, but I'll just keep it short. But I am checking riblets

Scott Benner 35:09
don't go check him out. Sure I'll wait. If I can't understand about needing to check your blood sugar, nobody would understand.

Ella 35:16
191 that's another thing that's so frustrating is some days I'll wake up. Like, for example, two days ago, I woke up I was like, 365. And an hour later, I was 60 something I'd gone. double arrows down, bam, pressed, what

Scott Benner 35:37
did you do anything to affect that 350 or it fell on its own.

Ella 35:41
I was asleep. And then I woke up. And I checked. And then like, before I even had time to Bolus. I was getting a double down on the Dexcom.

Scott Benner 35:55
Yeah, so that's a pretty big swing, because what if you would have done something about it? Right? And then it would have fallen on top of that, then you would have been in that situation in either direction. Okay, understand. So yeah. All right. So okay, so type one gas, your precess body has trouble regulating a lot of different functions, anything else so I can understand the whole picture.

Ella 36:16
And I have Well, I also have a pernicious anemia, which is autoimmune b 12. deficiency. I have Tourette syndrome. I have severe iron deficiency anemia. I have PTSD. And I have severe vitamin D deficiency. And I actually just established with a doctor, all the geneticists, you know, that is

Scott Benner 36:58
looking back into the history of your family and your genetics or maybe I'm wrong.

Ella 37:03
Essentially, yeah, pretty close. Yeah. Um, so that's just like the doctor. Right? Same for Yes, that exactly. So they do a lot of like chromosomal disorders or, you know, genetic disorders, such as, and he sent testing for a condition called mitochondrial disease. And we are awaiting those, all those results to come back. But because of the complex history, and everything that literally took me about two hours to cover everything with my doctor. He said that it's likely that I really do have a mitochondrial disease. So blood work was drawn and we're waiting on those results.

Scott Benner 37:53
What would that be? What is the impact of that?

Ella 37:58
I'm going to quote one of my favorite, kiddos, she explains it really well, in her video, and her name is Anne Marie. And she explains it like this. Every cell in our body, except red blood cells has mitochondria. But a kondia takes oxygen and food to create 90% of the energy. Our bodies need to sustain life. So mitochondrial disease occurs whenever the mitochondria fails to produce enough energy. That lack of energy leads to cell death, and multiple organ failure. multiple organ failure leads to the Death to the person who is affected, and to folk. Ah,

Unknown Speaker 38:45
well, that's not fun.

Ella 38:47
No, we don't have complete confirmation on it. But he was pretty confident that I may I have a mitochondrial disorder of some sort.

Scott Benner 38:54
And so I'm so I'm sorry to like, if it becomes too much and you want to stop, just let me know. I don't know how much of just regurgitating what you go through every day is helpful to you and how much of it might be because because you said you have PTSD. I'm assuming the PTSD is from the Panic of my blood sugar's falling, and I'm gonna die. Like like is that pretty much like after that happens to you enough times? It's just It feels like it. No, no, no, I don't know what to say next. So you go ahead and talk. What? That's my guess. But you tell me.

Ella 39:31
The Dexcom itself has saved by life more than like 280 plus times. So I was formerly living in my apartment up in New York. And not in New York City. the boring part

Scott Benner 39:46
of New York City, the boring part of New York

Ella 39:48
is the one that no one's ever heard of. And then I recently moved to Tennessee. Okay, and prior to When I was living in New York, I lived alone. And unfortunately, family is a luxury not a given. And so I've really been doing everything on my own for years throughout this journey. And I would go to sleep and I would have all I would call my diet stalkers by Dexcom. followers. I call them the diet stalkers because they'd suck my blood sugar, nice. And then if I were to go low, while I was sleeping, they would call my phone about, you know, 20 to 50 times, depending, if I didn't wake up, they would go ahead and dispatch EMF. And then the ambulance would come by Ms teams would come in, they like Ella was up for law, Li YOLO, or all sorts of good, and then sometimes I'd wake up a little bit and be totally out of it. And they would just deliver the dextrose by blood sugar would come up, and they'd be on their way.

Scott Benner 41:07
That does sound like something that I would feel stress about, for for absent

Ella 41:13
five times for horrifying. But then, in a way you kind of feel like, Alright, if I was gonna die from a low blood sugar, it probably would have happened by now. after all.

Scott Benner 41:25
It's pretty hell. so crazy. So instead of so instead of spending the last 20 minutes we have Dan, they're just going over. I mean, I think we've we've got a fairly clear sense of, you know, the scope and the, the impact of what's up I don't know, we know depth, but I think we understand that in total. So let me ask you some more personal questions since that. What is life like when this is your reality? Are you existing everyday is it just get up and let me stay alive till the next day? Or but you did say you like rock climbing? So are the things that you go do? Is it day by day? I'm assuming you don't work? I mean, hey, yeah, you're a full time student.

Unknown Speaker 42:08
I have a full time patient patient here full time.

Scott Benner 42:10
That might be the title of this episode, by the way. But, but but but Okay, so you, I would imagine that because like I said, like, I know people who are on dialysis, and that's a full time job. Oh, God. Yeah. Right. And so when you start adding all of these, I can't imagine you'd be you know, you're like, oh, and let me get a shift in here too. So I get that, right. But I'm trying to figure out for you, because you are. I've seen you in a couple of different modes, like you do Facebook Live sometimes. And I've seen you in a couple different modes, and I've seen bright, intelligent, thoughtful, loving, caring person trying to help out other people. I've seen you in a panic. And and I've seen you look so beat up that I was wondering how you even got the nerve up to like, sit up, do you know what I mean? Like and, and so I'm wondering how like, like, what is a day like, you don't mean like, like, how do you know what I'm saying? Like that's that's what I'm really interested in

Ella 43:12
a typical week, a typical week, I have anywhere from free his money as six to eight doctor's appointments. So a typical day for me consists of I effortless sugar roughly 15 to 20 times a day. And yes, I'm serious. Yes, I really do. I have the meter downloads to prove it. And my endocrinologist does my script is literally written for 15 to 20 times a day. Sometimes there are days where I only test 10 or 12 times but generally it's every two hours. And then whenever needed. So every time I get behind the wheel, I test when I wake up I test if I don't feel right I test and I do that as well as I wear the dexcom g five and the dexcom g five has been the piece that has really helped me navigate it's the GPS for diabetes I like to say so that said a typical day for me is I wake up and I push my nausea medication center again to my port and then I get my fluid set up and I just kind of still in bed until I'm feeling up to it and then if I have to go to appointment I get ready. And I also do like the normal stuff I am first your teeth and you know do your hair or whatever I

Scott Benner 44:43
would imagine. Yeah.

Ella 44:45
And then I you know get a blood sugar. Get where I want it to be. At least try. And then if then I come and take my morning meds after my non medical kicked in. And then I get on with my day. So some days, I phone for appointments, other times I go to the store. And sometimes I go volunteer at, you know, an organization like the Red Cross or the ADA or jdrf. Wherever I can help as I do, I have worked with some kiddos in my area over the years with who are affected with type one. And there's one little girl that I worked with, and her name is Noel. And she and I have a really good time together. And so sometimes her mom would drop her off. And I would, you know, we would just spend the day together. And it was easy, because I've been type one, and I know how to take care of her. But she has come such a long way. She's on the pump now. And he's thriving, and I love having the opportunity to help out with her. So sometimes I do stuff like that. But there are days where I'm in bed, and I'm not leaving the house, and I don't feel good. And I go between my bed and the bathroom and my bed in the bathroom. And I'm super sick. And there are times where I get really tired of this. by one of the things I say is sometimes we cry by a River Bridge, and get over it and come out stronger on the other side.

Scott Benner 46:39
That's amazing. Oh, well, because so what do you have? Do you have like long term goals for yourself? Like things you are trying to get to? Yes. Okay, what are some of those things,

Unknown Speaker 46:54
I

Ella 46:56
still don't want anything to stop me from becoming an RN. Because I promised my grandma, literally, she took her last breath that I wouldn't let anything stop me from becoming an RN. And that's where I call the Bret blessing in brokenness. I would not ever have been this prepared for nursing school, let alone a career in nursing. If I didn't go through this. So I'm wish I didn't go through this. But I appreciate that. It's made me as strong as an who I am today. And it's going to make clinical breeze because I've spent over 600 days in the hospital since August 11 2014. So I've had the opportunity to learn as I go, which is why I'm completely independent with my medical care. So I'm hanging IV fluids, I'm hosting IV meds on a daily basis, but I also know how to do port care. And I know a lot of I gotta got to be my own lab rapper.

Scott Benner 48:08
Well, if you have a perspective that most people will never gain, I mean, honestly, like on just, you know, on life on what tough means on what persistence means, on what, you know, on what a lot of things, you know, are at a much deeper, much deeper level than, than the rest of us. Like, I mean, excuse me, I got it, you know, I got a couple days ago, and I didn't feel well a couple days in a row. And so the idea of laid up in bed and barely wanting to move and can't do all that stuff. I get that but there's an expectation that that's going to end and that it won't start back up again. And so it seems like an inconvenience, not a you know, not a reality to me. But but yours is, you know, I'm going to get through this and it's going to happen again, it's not going to not happen again. It's it's definitely is. That's something that I just don't know that any of us can really imagine.

Ella 49:06
I'm on a quest starting in, I'm sorry, in 2017 I wanted to find a health healthcare that was competent, unable to meet my needs, because I don't want this to be the reality for the rest of my life. I want to get whatever I can to be able to get my health is stable. So another thing that really affects me is these net these vitamin deficiencies and minerals so magnesium, potassium, phosphorus, and iron. Those affected me really badly. Especially the beach falls like I was having neuro symptoms a little while ago and it was actually because part of the contributing factor was my vitamin D 12. was so low is in the two hundreds whereas the neurologist wants it in the 500 Okay, so that was really low. But that is just a piece of the puzzle. So ultimately, once I get all of these tests done, like I did, like I said, I relocated to Tennessee, and there's a lot of different specialists on there. And once I get God once I get all the testing complete, and we can find providers that can keep my level stable, like my electrolytes, my nutrition and my iron. Once that's all stabilized, I'm gonna be able to function because when they are stable, oh, my goodness, I feel amazing. I feel so alive. I feel like a human instead of like a walking carcass. Yeah.

Scott Benner 50:47
And so that's still a process that's ongoing. You You're, you're closer to doctors now that you think can help you. Yeah, get that into a better situation.

Ella 50:56
Yeah, and my goal is I want to get everything figured out, I want to get everything treated, that needs to be treated. Because come 2019 I want to go back to school. From day one, the first thing I want to say, first, the first thing I said is, I can't wait to go back to school, I'm going back to school, I'm gonna go back to school because I part of the reason I woke up is because I had a dream to become a nurse. And I've transition that from a dream to a goal. And part of what gets me through every day, even the hard days is definitely the support of what I call family friends. And a lot of the type one moms in my area have been just so amazing. And type one support mama and that. And a lot of amazing friends and through the community, through the type one support community and Susie, chronic illness support community has been able to maintain a positive attitude. And going back just brushing up on what you mentioned about what I share, I share what I do on Facebook. Because if I can help one person, realize that, hey, you can do this. Or if I can, you know, if there's one life that I can have an impact on. That's the greatest gift in the world, then all of this was worth it, then pushing on, in everything is worth it. Because bottom line, my ultimate goal in life, is just to have a positive impact on as many lives as possible. I was gonna say the summer, sorry, this is suffering. And as many lives as possible,

Scott Benner 52:39
I was gonna say that I think that what you share on Facebook is probably in some way, positively affecting more people than you might as a nurse to be perfectly honest, like not that not that that's not still an amazing goal, but it's still in the interim, you still are having that impact on people? Because it is it is it is completely impossible to even spend a couple of minutes watching what you're going through and not and not have those thoughts of, you know, if she can do it, I can do it. You know that that sort of thing? It really is? I don't know, it's I think it's really valuable for people to see and therefore valuable for you to share. And that can't be something that's simple. Like the first time you decided to tell people about this could not have been, it could not have been a fun or easy decision. I don't imagine but but I would imagine that everybody really appreciates it. I know that I do.

Ella 53:39
It's always really exciting to see when you jump on my live, I'm like, Oh my gosh, it's got better.

Scott Benner 53:45
You're very nice. So I'm not doing anything near what you're doing. And it's just, uh, I don't know, like, there's, there's times I think about you a lot. So I don't reach out a lot. But you you popped into my head a lot. So yeah, because you're just so you're very real while you're doing and there's no Um, there's like, there's no pretense to it. I don't feel like you're acting apart or just like, oh, people need to see me sick or like, you don't mean like there's, you're just very much there and, or, and just very, it's just really honest. So I find it really valuable. I can't imagine other people don't as well. I don't even know how you have the nerve to do that. I I don't have nearly the courage that you have. That's for certain. And as you describe your life day to day, it's difficult for me not to like interject my own thoughts over top of it and ask you like, do you know do you ever like feel like just giving up because I feel like it would make me like that. But at the same time I haven't been down your journey, your path. So maybe your path would harden me along the way you don't I mean, yeah, but just it's it's just, it's just Seems like from my perspective, I don't know how you do that, like, even like, I was gonna make a joke earlier that you might be at least a great person to ask about Netflix because you have all this time in bed, but you don't even have time in bed, you just bed bathroom bed bathroom, it's not even like you can lay there and go, Okay, I can't get up and get moving today, but at least I can binge watch trollhunters which I think now is just an insight into what I just watched last time. Netflix is a cartoon that I'm pretty sure it's for 10 year olds. But But anyway, like, you know, is it the? I mean, have you do you consider, like, how much of this Can I take or do you know, you can take it,

Ella 55:39
I kind of I'm not gonna lie. So in the beginning, I'm like, I can't do this, I can't do this, I'm so not ready for this, I'm not strong enough. And then the thing is, sometimes you don't realize how strong you are. Until being strong is the only choice you have. So I don't really I kind of keep the similar mindset like I do with type one, honestly. And I just thank God every morning that I have another opportunity to, you know, make, to be in this world and to do something with it. And kind of honestly, every day for me is like a kid on Christmas morning. Every day that I get here is like, as exciting as you know, little kids get on Christmas morning, because it's another opportunity. And that's the greatest gift, the greatest gift is definitely time and time with the people who you love most in this world. And there are times where you get down. And I do need to, that's when I say I take a moment or so forever, build a bridge, get over it. So I might, you know, take I'm human. So I do take the time to take a few minutes acknowledge what I'm feeling, maybe call one of my best friends or call a support person. And be like I'm so sick and tired of this. And then we end up laughing and then that's a call that part building the bridge. And then we go ahead and you know, we move, move on and you know, keep going and it comes down to it. You can either laugh, or you can cry. And if you can find a way to laugh, that's going to work out a lot better and crying for you in the long run. Because when you live here actually producing some income that totals hormones in your brain. And those two actually literally help reduce your suffering. So I do watch some TV shows, but I'm not really on Netflix a lot. I do. I honestly I'm just not a big fan of a lot of like TV shows. I do like a couple like bones and castle. But those are fun. I love Boston. I felt like I can relate much. But other than that,

Scott Benner 58:01
that's a very well, you know, it's funny. So we're wrapping up here on an account upon an hour already. That you early amazing. But I was thinking this morning about something completely disconnected from you, I was watching the news or you know, paying attention to the news. And there's a lot going on politically and there's a lot of people being indicted and things are going on like that. And I it made me think of if I was guilty, right? How long would I fight? Like At what point would I say you know what, you got me I give up and then I realized probably never like if I did something and you caught me I deny it right till the very end and I think that's a human condition that that is that is the human spirit in a funny way, right? Like the idea of I'm not gonna give up. I'm not I'm not giving up. You can kill me if you want. But I'm not giving up I'm not going to be the one to say I'm done. I it's just me that the human mind and the human body. It wants nothing more than another minute. Like do you know what I mean? Like you like that's that's the thing that most of us that keeps most people going it's you just you don't want to stop and by stop I mean like you don't want to not exist anymore in whatever form that might be you just you want another second in the game and you'll almost do anything for it. And it's it's almost kind of despicable is that is in an illegal situation. It's also the same function that I heard you talk about for the last hour I can't believe that it's something that randomly popped in my head and you basically talked about it all morning, which is like you're not giving up you know, I mean like you went through Excuse me? I've been sick but he went you went through you know you've got type one you've got gastro priestess yet all all the things that you listed and then possibly something else on top of that. I never heard you say, but I'm going to wave a white flag. Like I heard you say one another day. Like I want to get up I want another shot at this I want to try to fix it. I want to be better there. I know there's a world where I feel better because I've been there. How do I get there? And stay there so that I can make the most of every one of these things? I 23 you have like the perspective of, of like, 1000 year old person, you don't mean like, it's no, it's amazing. I know some people you should talk to me on it, that would be awesome. Now they should pay attention because there are some people need that kind of perspective would be very, very valuable for a lot of us. So I really appreciate that you put it out in the world like this. Thank you very much. Is there anything? I didn't ask you or anything you wanted to say that that we didn't get to say?

Ella 1:00:40
And I am not only on Facebook, I'm also on YouTube. I was feeding type one. It's all lowercase MySpace, EA t i n g. CYP one. And I was inspired by some of the early diabetes bloggers and I also have a blog, which is Bolus of hope. org.wordpress.com

Scott Benner 1:01:09
I'm gonna get you to email me all your links, and I'll put them in the show notes so people can see them. Who was a Did you have a blog or that? Now I said this I put myself

Unknown Speaker 1:01:19
read yours. Don't I thought when it was first kicking off?

Scott Benner 1:01:23
It's gonna say don't say me. But is there someone? Is there someone that like that you saw that like or why? Let's say that you saw a blogger? What What about them made you think oh, I should do this, too.

Ella 1:01:35
I was really inspired by Carrie marone. Starling. And diabetic Danica.

Scott Benner 1:01:42
Okay. Yeah, there's two good ones. I could easily see being inspired by both of them. Danica does such a great job on YouTube. And yeah, and and Carrie is a machine of like, honesty. And she she can she blogs. Like it's a like it's really sad. I'm, I know that I know that. You were probably I don't know how you would say this, for sure. But I think Harry's probably got one of the oldest, if not the oldest type one diabetes. Yeah,

Unknown Speaker 1:02:12
I believe it was 2005. Yeah,

Scott Benner 1:02:15
like, I think it was her. Then Scott Johnson. I know I came in sometime after that around 2000, early, early 2007. And there were some other ones in there too. But you're really talking about a smattering of these blogs. I joked with somebody the other day that I had a blog back before people knew what a blog was, I've had one so long. No one even cares what a blog is anymore. So I somehow we lived through most of the of that. But I've seen blogs help people in ways that, you know, I imagined couldn't be any greater and then listening to you just now say that some of these have had an impact on you. It reinforces what I thought about them. It's just such a very valuable and an honest thing when people are willing to share like that, so that somebody else can see it. And now you're part of it, too. You do it as well. So I think you do it as well as anybody. So congratulations. Very well done.

Ella 1:03:11
Thank you so much. This is such an honor. No, I can't thank you enough.

Scott Benner 1:03:16
You're you are very kind to say that this is just you and I are just talking on the phone. It's just happens to be recorded and a bunch of people are gonna hear it. That's all.

Unknown Speaker 1:03:23
Yeah. All right.

Scott Benner 1:03:27
Though, you were you were great. You weren't? Listen, you were 100% fantastic. Your voice sounds clear. You know what you're I mean, listen, I love talking to people about their lives because like I said, at the beginning no one knows your life better than you. And if you're willing to talk about it, the answers are just incredibly they're valuable in ways you can't even imagine. So you're going to have helped people with with what you did here today. Again, in ways you're not going to completely understand so really well done. Thank you so much. I'm going to stop the recording and then say goodbye nicely, and like people hold on one second. Hey, you can check out Ella's YouTube channel@youtube.com forward slash beating type one and definitely find her on Facebook. I'm gonna put a link in the show notes to both of those things. Thank you so much Ella for coming on and sharing. Seriously I don't even know what to say just really amazing of you to come on and tell the story. Thank you dex calm and on the pod for your continued sponsorship of the show dexcom.com forward slash juice box my Omni pod comm forward slash juice box the links your show notes or Juicebox podcast.com MDI users if you did not hear Episode 174 with the people from in pen, go back and listen in pen makes an insulin pen that combined with their smart app gives you a ton of the functionality that insulin pumps have. Thank you so much for listening and thank you for the great reviews on iTunes. The podcast continues. To grow because of you and your sharing Thank you so much. I'll be back next week with another episode of the Juicebox Podcast.


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#176 The Magic Wand

Scott Benner

What being cured could mean...

Colleen is a summer breeze, a big hug and your favorite blanket all in one. A long time type 1 diabetes advocate joins the conversation about what a cure would mean to her. Arden has hypothyroidism, and much more.

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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 0:03
Hello, and welcome to Episode 176 of the Juicebox Podcast. Today's episode is with Colleen, Colleen is interesting in a number of ways, but let me tell you something else first. Do you remember back in Episode 157 it was called Lindsay is a cornucopia of emotions. Do you remember that episode? my conversation with Lindsay came about because I asked a question online about how people might feel if diabetes was just magically cured. When I asked that question online, I came up with two people who wanted to be on the podcast one was Lindsay back in Episode 147. And one was Colleen, who you're going to hear today in Episode 176. And while the conversations begin, in the first couple of moments exactly the same, they go in completely different directions. Also, in this episode, I talk a little bit about art and being diagnosed with hypothyroidism, which I don't think I've been as clear about in previous episodes. Colleen just does an amazing job of sharing her life and times with type one. I'll tell you a little bit about her. She's an adult who has children, little babies, she's married, she's had Type One Diabetes for a very long time since she was little. And she is a long time very active member of the diabetes community online. Please remember that nothing you hear on the Juicebox Podcast be considered advice, medical or otherwise, always consult a physician before making changes to your health care plan. Oh, you know what I forgot to say something. This episode of The Juicebox Podcast is sponsored by Dexcom. And on the pod. There'll be a little more information about both of these great products later in the show. But you can always go to my on the pod.com Ford slash juice box, or dexcom.com Ford slash juice box to find out more. There's also links in your show notes.

Colleen Ngyen 1:53
My name is Colleen Ngyen n g y en I know I've done I've been diabetic foot forever.

And I work with work for a camp. Kids with diabetes in the summer. Yeah,

Unknown Speaker 2:07
that's about it. See,

Colleen Ngyen 2:08
I'm a diabetes nerd. Yeah.

Scott Benner 2:12
Okay, so I'm gonna get something out of the way very quickly. People listen to the show a lot will understand this. I think that these conversations go the best when they're completely just organic. And we don't plan them out. We don't email back and forth to talk about things. In the pursuit of that idea. I sometimes forget why I wanted to talk to people. So here's my recollection. I had this big idea one day, and I reached out I said to people, if you feel like this, please let me know if you want to be on the podcast. Is that about right? Yeah. Except I forget what this is.

Colleen Ngyen 2:50
Oh, it was a if you wouldn't want to cure?

Unknown Speaker 2:55
Ah,

Scott Benner 2:56
yeah. So it was up. It was up between that and adults who are afraid of using insulin because they're alone? I didn't think that was you because I know. You're not alone? No,

Colleen Ngyen 3:06
definitely not alone.

Scott Benner 3:09
Because you've got like children and dogs and husbands. Yeah, you can.

Colleen Ngyen 3:12
You can probably hear my dog a little bit right now.

Scott Benner 3:14
What's the dog's name? She's got her name is reka. Listen, if we hear ruka that'll be good. Yeah. Okay, so we'll get a little we'll dig down a little more into who you are. Because you were you. When you describe who you are. You're like, it's me. It's Colleen. I don't know. So let's do it like this. How old are you?

Colleen Ngyen 3:34
I am 31. All right. When

Unknown Speaker 3:35
were you diagnosed?

Unknown Speaker 3:37
I was three years old. Okay,

Unknown Speaker 3:39
I'm going to do some math now. Hold still.

Unknown Speaker 3:42
28 years? Yes.

Unknown Speaker 3:44
See? It's amazing. Yeah.

Colleen Ngyen 3:46
I usually tell people I was diagnosed at three and I've been diabetic for 20 years. So please don't do the math.

Scott Benner 3:52
Well, here's what I just did. If you want to look behind the curtain, I took 31 and I subtracted one that got me to 30. And then I realized I had two more and I took off those two took me right to 20

Colleen Ngyen 4:03
is that common core?

Scott Benner 4:05
You know what? That's the that's the one that the guy who didn't go to all the days of school? Yeah. Okay, so you've had diabetes forever? Yeah, it's interesting. 28 years, you were diagnosed at three years old. My daughter was diagnosed when she was two years old. But you're three years old? quite some time ago. And and so I'm gonna ask you a question before we get into why, you know. So when, when, when Arden was diagnosed at two, I remember hearing, like, people were like, Oh, you don't have to worry because long term complications from diabetes don't really come into play for like 30 years. And I remember going well then like, it'll be 32 when that happens? Yeah. Like, like, how is that comforting in any possible way? Like why would you say that to me? Like let's say that that's not even true, or it is true and I don't see it as being True. I don't think there's a number you can put on it. But it was this interesting idea that I thought, Oh, this is how they used to make people feel better. They were like, oh, you're 20 by the time this really affects you, you'll be old and you won't care about yourself anyway. And like, that was the vibe. Right? That came from them. Have you had any issues? so far? No, nothing? No. I'm lucky. And, and I do see it that way. A little bit, too. Yeah. Yeah. And because, I mean, 28 years ago, let's call it 30 years, because it's making my brain hurt to say 2030 years ago, you must have been like, that's not even like big brick meter. You get to take home time as it is.

Colleen Ngyen 5:39
I had I, my very first meter was just called one touch. Like not one touch something, it was just called the one touch. It was the one touch meter. And they were like, well only ever

Scott Benner 5:50
need one name. This will be great. Yeah,

Colleen Ngyen 5:51
right. And my second one would call the one touch two.

Unknown Speaker 5:57
Very creative.

Scott Benner 5:58
I have to say that sounds dirty. Actually. One Touch too. It feels like there's more to that sentence. But But okay, so you you she did have a meter, but it wasn't portable.

Colleen Ngyen 6:12
Yeah, yeah, I took, I think 60 seconds. And it was one of those ones. He had to put like the big blood drop on the strip. And I'm making a motion with my hand right now.

Scott Benner 6:25
Welcome to pantomime podcast.

Unknown Speaker 6:29
I'm putting it out.

Scott Benner 6:30
Yeah. So for the rest of the podcast, we'll all just sit very quietly and try to imagine what it is you're doing with your hands.

Unknown Speaker 6:36
Yeah. It'll probably get anyone to use that strip knows what I'm doing.

Scott Benner 6:41
So you were basically like cutting a vein open and like pouring on top of the meter. Just and and a minute later, as you're a little dizzy from the loss of blood? It would, it would give you a number. Essentially, I wonder if those big meters were more or less accurate than stuff that's available today?

Unknown Speaker 6:58
I believe they were less. Right.

Scott Benner 7:01
I mean, I don't know. Exactly. Right. So. Okay, so you were working with specious data? You're a little dizzy from the blood loss. And you were a couple of years old. I'm assuming did one of your parents. Were your parents together? Yes. Did one of them die more? They still are. Yep. Well, that's Listen, that's really good news. For people listening whose kids have diabetes, this probably isn't going to make us all get divorced.

Colleen Ngyen 7:26
Yeah, I mean, my, my mom was my primary caregiver. When my dad helped to, I mean, they were both very knowledgeable, still still are very knowledgeable. My mom, my mom, still, you know, sees my Dexcom information. And every once in a while will text me like, Hey, what's going on with a helicopter emoji?

Scott Benner 7:46
Colleen, listen, I didn't give up this much of my life for your health to watch you right away now. Is that comforting? Or is it annoying? Or how do you find it?

Colleen Ngyen 7:57
It is actually. I mean, it seems to me one. I was up in the middle of the night with my kids. And my blood sugar was like 300. And I use I use the T slim and I went to put in my blood sugar. And I accidentally put it in the carbs. Okay, and I was so tired that I just like whatever, just do it. And so, you know, I got like 30 units.

Unknown Speaker 8:22
You know, that's, that's how you want to roll. Yeah.

Colleen Ngyen 8:26
So and I wasn't waking up to my CGM alarms and but my mom saw it on my share and kept calling and calling and calling and came and knocked on my door and woke me up.

Scott Benner 8:36
She actually came to your home. Yeah. Does she live closer? Was it?

Colleen Ngyen 8:40
Yeah, she was called. And she actually works even closer. So

Scott Benner 8:42
it was nice. But still, she she saw she saw she saw you really high. Then she saw you dropping really fast and you weren't. You weren't waking up. And so she was like, Look, I'm not. This isn't how this is ending.

Colleen Ngyen 8:55
He was right she did. It was right. Like that's that saved me.

Scott Benner 8:58
Yeah, you were in a bad spot. Yeah. And that's something so when you put 300 in carbs, you obviously didn't realize it when you didn't you weren't what you weren't like, I'm just gonna get myself 300 carbs, right?

Unknown Speaker 9:07
No, no.

Colleen Ngyen 9:08
And it even gave me that like Max Bolus. Your maximum over your maximum boss, do you want to continue? And I was like half asleep. So I said yes,

Unknown Speaker 9:17
absolutely. I

Unknown Speaker 9:18
do. Let's roll up on this.

Unknown Speaker 9:21
Hi, give me Let's jump forever upon two feet first into the trashcan fire and see where we get.

Colleen Ngyen 9:27
And just so everyone listening knows I had no infant twins as I was very tired.

Scott Benner 9:35
It's possible you would have just, you know, done anything in that moment. So So the point is close to the dexcom share really did it. Right. But saved my life. And you know, your mom understood enough that it wasn't just like this weird number that was happening that she didn't understand. She understand it,

Unknown Speaker 9:51
we understand. Right? Yeah. And she's, I mean, she's,

Colleen Ngyen 9:54
she's called the ambulance for me, you know, numerous times over my life. So that

Scott Benner 9:59
was gonna be my next Question is that when you're young and the technology's not nearly what it is today, do you was being dizzy? part of your life was like, do you mean like, What? What was the test of time? Or how did you handle that?

Colleen Ngyen 10:14
Um, yeah, I mean, I was very aware of my sentence. I would tell my mom, I was hungry. That was usually the time. That's kind of what it feels like sometime. Yeah. Um, yeah, it was. It was a lot of going on feeling more than anything. Yeah.

Scott Benner 10:27
You know, it's so funny is this just this morning, we had what I would consider to be a technology meltdown here, where we got up in the morning Arden's pump needed to be changed on you know, I didn't expect it to need to be changed. We've been having, like an issue with the Dexcom, which Dexcom trying to help us with, but right now, it meant I had to do something this morning. So I pushed her out of the car this morning, with no CGM on, and a pump that had just been replaced. And I The last thing I said to her was, well, we had set a timer. I was like, when this timer goes off, test your blood sugar tax me. But But the last thing I said to her when she went out the door, as I said, Hey, pay attention to how you feel. Yeah. And and I realized it was like that must have been just that thought must have been prevalent everyday for you. Just pay attention to how I feel.

Colleen Ngyen 11:15
Absolutely. Which actually was actually I mean, I feel that that's helped me in other ways in my life. I'm very aware of my body all the time.

Scott Benner 11:24
I do always think that. I don't know that how many people would type one appreciate it. But you're more tuned into your health than most people are. Yeah, definitely. Yeah. You know, you really do. I'm able to ignore things about my health every day, because I don't have this overwhelming feeling that it could literally kill me today. Yeah, you're right. Like, I feel like the things I'm ignoring. I can, you know, that's not going to be a problem. So I'm like, I'm sapphires. And then I won't care. But

Colleen Ngyen 11:51
sometimes it makes me a little bit of a hype. Oh, God. My husband is a nurse and he rolled his eyes at me. But because

Scott Benner 11:58
you're constantly looking going, this could be something. Yeah, yeah. Arden's old site two sites ago. So what is that six days ago, maybe we change the pump a little early. So five days ago, I leaned on it and she goes that sore. And I remember thinking to myself, like mental note, keep checking that site to make sure it doesn't get infected, which she never had an infected site in all these years of having diabetes, and I was one of those things. Yeah. But I was still like, Okay, let's try to remember that, you know, okay, so my initial question to you was, I put it out there, I forget, let's try to if we can figure out the genesis of this. Someone online said something that made me feel something. So it wasn't what they said it, it sparked an idea in me. And I think the idea that it's part to me was, are there some people who have just had diabetes for so long? That it's part of who they are, and taking it from them might be strange. And and I asked that online, a lot of most people came in, who were parents. It's funny, the parents came in and they exactly, they were like, no,

Colleen Ngyen 13:03
not all the time. It's different. If you ask the parents, right? Yes to the actual person, hundred

Scott Benner 13:07
percent, they were like, take it away. I don't care if she's attached to it or feels like it's her not sure readjust. But some of the adults came in are like, you know what, I'm pretty good the way I am. I don't need this to change, which I found incredibly comforting, and thought the parents should be comforted by it too. But notice that they were not comforted by it. And I thought,

Unknown Speaker 13:25
my mom gets mad. My mom gets mad at me when I talk about.

Scott Benner 13:29
So tell me tell me a little bit about it. Like, is it just? Is it just wrapped in who you are at this point? Or how do you feel about that?

Colleen Ngyen 13:36
Yeah, I mean, to me, to me, like the shot, you know, the shots, the pricks the the pumps are not, that's not the hard part of diabetes, I can live with that. Even me, I don't need a cure. Right. I don't need 100% biological cure.

Scott Benner 13:53
And do you think that that's because? So let me ask this question, what's your level of concern that you're going to unexpectedly die in your sleep?

Colleen Ngyen 14:03
I mean, pretty, pretty high,

Unknown Speaker 14:05
I would say. And still,

Colleen Ngyen 14:06
I feel like that. I feel like there I could use better treatments. There are things that are more obtainable right now. That could that could help.

Scott Benner 14:16
You does? It does do do your feelings? Do you think your feelings are rooted in me think about how to say this. Are they rooted in your kind of? Because to me, it would be a common sense it to me, it's a common sense idea that they're probably not going to cure diseases. Right. Like we've all been around, excuse me. We've been around for quite some time as like, thinking people with medicine. I think we've managed to cure two, maybe three things of the bazillions of things that are possibly could go wrong with you. And so is it just that like, hey, look, it's fairly unlikely they're gonna hear this, so I don't want to think about that. Or is it?

Colleen Ngyen 14:53
Nah. Oh, maybe. I mean, maybe a little bit. I think. I think I You know, I am used, I'm used to being diabetic. I'm used to having diabetes. And

I don't, I don't know what to think of how to how to raise what I'm thinking,

Scott Benner 15:13
Oh, please, using your hands that we can't say, yeah.

Colleen Ngyen 15:17
I was actually just sitting on my hands. Okay, that maybe that'll help. Yeah, I've, you know, I was told that I there, you know, like everyone does that there'd be a cure in five to 10 years, or by the time I was a teenager, I think is what the doctor told my mom. And here I am at 31. And we're not even close. So, I mean, I can't keep I can't keep hoping for that. Because it's heartbreaking. And there's no, yeah, like, I that's not going to happen. And I'm, I have to be okay with that. I've accepted it. And, and fighting for just a carrier is not good enough for me. And you have to go Yeah, oh, I get very frustrated. It's all it's always parents no offense. The parents who are who get upset at, you know, at jdrf, because they're, they're fighting for treatments all as well as the cure. They, you know, they're giving money to organizations that are just fighting for a cure. But that's not what we need, necessarily.

Scott Benner 16:16
Yeah, it's a very it's an early feeling like so you here's the part you don't know about, right, which is because you were diagnosed as a little kid, and you weren't, it was you, it wasn't like somebody you loved, right. And so and so the part you don't know about as there are the stages of grief that you roll through as the parent of somebody who's just, you know, forget the word sex, they're just, their lives aren't going exactly the way you envisioned them. When you were sitting around your house in your 20s, go, look, we're gonna have a baby, everything's gonna be so great. You know, and so it's just that feeling of like, I can't fix this, I can't take it away. That's an incredible burden for you. And then you think, well, somebody else should help. And then when you look up, they don't feel like they're helping. You're like, Oh, my gosh, no one's gonna help us. But I agree with you. 1,000,000%, I understand the feeling because I've had it. Yeah, but I agree with you, I was able to push up there, but you see it online all the time, like somebody like it, you know, for you know, it'll be on the bottle, put up a like, Hey, here's the Omni pod and blah, blah, blah, and this is what it does. And maybe you'd be interested in it. And then inevitably, five comments down some lady who appears to be in her 30s, and someone's mom goes, spending money and all this and just cure it already. And I'm like, Well, first of all, if it was that easy, right? It's such a, it's such a strange statement. Like, to me, it sounds like they're saying, Would you just stop messing around and go outside and lift the house up over your head? As if that's a possibility in your day? You know, and then you'll hear from people who are, you know, their conspiracy kind of theorists who say, you know, that people make too much money off the cure it like as if there would be no money in curing it. And you know, and they said, well, then it wouldn't go on forever. And you know, people would still get diabetes. You know, you bought by the way, if you came up with a cure that that doesn't necessarily mean it would be, you know, simple word that just flipped out of my head.

Colleen Ngyen 18:13
And actually, that's why I have my kids are in trialnet,

Scott Benner 18:16
because you want to see it coming, right? Yeah,

Colleen Ngyen 18:18
why aren't they coming in? I want to help prevent as well. If you can, if you can,

Scott Benner 18:23
yeah, something some data.

Colleen Ngyen 18:25
And everyone else, you know, they

Scott Benner 18:28
see how nice you are. This is lovely. Yeah.

Colleen Ngyen 18:32
It helps that I have like, a lot of friends with.

Scott Benner 18:36
You do right, like so. you're one of those people who I've never met in person, but I genuinely feel like oh, my God in Philadelphia. Yeah. Okay. So take that away. Forget that we've met once. It doesn't matter that we've met once. I know baseball. Did Okay. Okay. So forget that part. Forget. Okay. This is the part I was trying to get to anyway. When I see your face. Yeah. statically. I feel like I know you. Yeah. But you know what I mean? Like they might let you in? Right? Like, but no, you know, you're not like I bumped into you one time, or we talked about baseball, or I've we've texted back and forth or something like that. You genuinely feel like somebody like you're one of those people who stayed in the community. But you stayed there because it brings you a great deal of comfort. These real friends, right? Wouldn't. And so if I said to you, I can magically take diabetes away today. So this is the real question. I have a magic wand. Well, I can wave it over your head and you don't have diabetes anymore. What do you say to the to the offer?

Colleen Ngyen 19:37
I have to say that I don't like I probably I would take it. I mean, I would. I don't know what I would do with myself.

Scott Benner 19:46
And of course, I would expect it obviously say you would take it but then what do you think comes after that?

Unknown Speaker 19:51
Like, no,

Scott Benner 19:52
do you lose friends? Do you lose support systems that are more to you than just diabetes? What do you think would happen next?

Colleen Ngyen 19:59
What would be the backlog? That's a hard thing cuz like I mean Altieri like diabetes camp is is my passion. If I could do it for a living I would. And I spend a lot of my not I don't have free time, but I spend a lot of my time working on that. So I don't. And I do, and I do it for the, for the not for myself, even your I mean for kids? And I don't know. Uh, yeah, it would take that away from me. I don't know what I would do with my life.

Scott Benner 20:30
So I it's funny, because I know what you're saying. Because you and I talking right now making this podcast or yesterday yesterday, I saw like a study from UCLA that talked about, I don't know, it was sleep or something, you know, and I thought, oh, I'll put that Oh, like, all right. I genuinely. I don't want to say I enjoy doing this stuff. I don't not enjoy it. But it feels like good work, I guess. Right? Yeah. And so if you took that from me, I'd be thrilled for the people who don't have diabetes. But there would be a void in my life where I felt like I'm not helping people anymore. Absolutely. And and I don't honestly know what I would fill that with. I feel like as I'm saying it, I'd fill it with Netflix. But

Unknown Speaker 21:17
what other things could I do? What else do I there's nothing that I feel that strongly about?

Unknown Speaker 21:22
Maybe I would exercise? that's

Colleen Ngyen 21:24
not entirely true. If we're friends on Facebook, you know, there are things I feel

Scott Benner 21:27
right, right there. Right. There's things. But would you it's an interesting idea that it is because there are other people out there who don't do that, who don't stay connected to people who are like, like, Listen, I'll say something right now. And I hope it comes off exactly the way I mean, if I shut this podcast off today, and never put another one of these episodes up, my kid would be just as healthy. You know, like, I might stop. Or I might stop learning about diabetes at the pace. I'm learning an app, but I wouldn't forget everything. Like I wouldn't be the one damaged by that decision. Right. And and, and as I say that, I think, well, there would be a lot of other time for things, but then I don't know what those things would be. Yeah, it's just really interesting how something that on day one felt so horrible. And on day, whatever this day is still is horrible. Yes, but not horrible in the way. I expected, I guess. Mm hmm. If that makes sense or not?

Colleen Ngyen 22:23
I mean, it's especially it's like shaped who I am. I mean, how could it not? I'm one of those people. I don't I don't normally refer to myself, as you know, a diabetic. I'm a person with diabetes. But I also wouldn't say that it doesn't define me because it absolutely does.

Scott Benner 22:41
Yeah, I mean, so much of your day. Really?

Colleen Ngyen 22:43
Yeah. The only person that might like my whole personality. I don't, I don't know. Like without it. It's always been it's been in my mind since I was three.

Scott Benner 22:53
That's such a strange thing, like and so as much as it's something that's not, you know, pleasant, or that you would use that it's not like, it's not like if I took a person who didn't have diabetes, I said, hey, how would you like diabetes, it's gonna shape who you are really gonna make you care about other people. You know, would you like that for that? And he'd be like, yeah, you know what? No, but could I just work on those things on my own, but it's funny, it forces you enter that situation. And I will say something that I'm sure I've shared her. But I don't know how clearly I've shared it. For the last decade, my daughter Arden has been using the Omni pod tubeless insulin pump. When I described you why I think the Omni pod is the right choice for anyone interested in pumping. It kind of sounds simple, right? There's an automatic insertion of the candle. There's no you know, things to fuss with, you just push a button that happens. It's waterproof, so you don't have to take it off for swimming, or bathing. And it's incredibly easy to change. When it's time to change your pump, it only takes a couple of moments. Now, you might think, well, that all sounds nice, but that's not exciting. But trust me, if the opposite was true in your life, you would find these things very exciting. If you had to take off your pump every time you got a shower, and then you forgot to put it back on and your blood sugar went skyrocketing up, which happens to a lot of people, then you would find waterproof, really exciting. If you were at your softball game and needed a new pump really quick and only took two minutes to switch it. And there was no priming and all that stuff. You'd find that very, very exciting. So while it is difficult sometimes for me to convey the amazing nature of the Omni pod because it's an insulin pump. It's not a car, I can't be like Hey, it goes zero to 60. And you know, trust me for an insulin pump. It's really, really exciting. I want you to go to my omnipod.com forward slash juicebox or click on the link in the show notes in your podcast app or Juicebox podcast.com because when you do that, on the pod is going to send you a free, no obligation demo of the On the pod that you can try on and wear, so you can decide for yourself, Miami pod.com, forward slash juicebox. I will say something that I'm sure I've shared her, but I don't know how clearly I've shared it prior to my daughter having diabetes, the person you're listening to right now, this is not the person I was. No, like, I was not this. I was kind, but I was privately kind, I would have never been behind overtly or in public, I wouldn't have gone out of my way to say something uplifting to someone, or, or, or if I wish, sometimes, sometimes I get scared to say this out loud, because I almost don't have time for what I'm doing now. But if you saw my private messages, and the amount of people who I'm talking to about their diabetes, or about and it's not as much nuts and bolts stuff, as you would think sometimes it's just like, Hey, you did it. Congratulations. That's amazing. Yeah, you know, I've been talking to a mom for weeks, who just messaged me one day, and she's like, I am gonna conquer cereal. And I was like, you go get it. I was like, like, and it was funny,

Unknown Speaker 26:13
and then tell me how you did it, please.

Scott Benner 26:15
I can do it. But But and I told her how I thought I how I did it. But then she didn't have to put into practice. And you have to actually find the balance between the insulin and the carbs, and the timing and all that crap. And and, and she's like, I'm gonna do it. And then someday, she'd send me a graph. And she's like, look how close I came. And I was like, Wow, that's amazing. And now I'm like, I'm being like, I'm like, I'm her support system now on this endeavor. And I like it. I mean, it's, it's, I don't dislike that she and I talked about that. And one day, the real interesting part is, and for those of you who may have corresponded with me at some point, or considering doing it now, one day, you just disappear, which is great, by the way, like I, one, one day, this woman just won't send me another message, which means she figured this thing out, you know, and that'll make me feel good, except the hose on the other end going, we'll just no goodbye at the end or

Unknown Speaker 27:11
just haven't gone anywhere.

Scott Benner 27:16
But it's, it's, it's again, it's something that you would not have if you knew me, prior to my daughter having diabetes. And you could look and see the person I am today that you would never, never be able to imagine that I would have transformed from that person to this person. Yeah,

Colleen Ngyen 27:33
that's something I think about a lot too, because I have no idea what kind of person I would have been.

Scott Benner 27:38
Yeah, who knows? Something like just like, really, just imagine if I could be in like, prison now. That's a sci fi movie.

Unknown Speaker 27:50
I'd be a lot richer.

Scott Benner 27:52
I would definitely have more money, I'd have more sleep. I would, um, I know that that would be a big deal for me, like I can, I know that I know that having more sleep would be a big deal for me. I can tell that this is going to adversely affect the end of my life. Whenever that ends up being. Yeah, you know, um, that that is one thing. I do remember thinking. on day four of our diagnosis, we were coming out of a carb counting class that ended up being a waste of time, but we came out of a carb count. And my wife said, it just hit my wife like a ton of bricks. She's like, is she gonna be able to have a baby? And I was like, are we gonna get divorced? And she was like, What? And I'm like, why? Like, because I never thought was she going to be able to have a baby? And all I thought was, is this going to be too much? Like, are we like, enough of like, is our whatever it is we are together? Like, is it enough to withstand this? You know, and it's not that I felt like it was like we were we weren't, I just thought this is an unnatural amount of other stuff, you know? Yeah. And then our endo tells us a month later that the national average of divorce is one in two but when you add a chronic illness to a spouse or a child, it goes to two and three. And I was like, Well, that sounds like more. Yeah, I was like, Why did you tell me that? Like I'm already crying a lot at home to begin with, but the more this information, please, Doc, upbeat lady,

Unknown Speaker 29:30
and so um, well use my here's my family.

Colleen Ngyen 29:35
My parents are still together and I have three year old twins.

Scott Benner 29:38
So can you Oh baby possible to stay married? Right. Yeah. So but but you get my point. Is that it? Yeah. Who knows who you would have been?

Colleen Ngyen 29:49
Well even like, my like I said, My husband is a nurse. And one of the first things you know, and he probably was using this as a you know, he liked to talk to me about Diabetes, because he was interested in it, because he was in nursing school. And then we got married.

Unknown Speaker 30:08
But what well what his pickup line have been?

Scott Benner 30:12
No, hey, I understand your insulin to carb ratio. And to be helpful with that you were like, I don't even like you. But if my insulin to carb ratio, your

Colleen Ngyen 30:24
diabetes is a huge part for our whole family, like, our whole fight family dynamic could be different, right? If our family even existed, like it's crazy to think about

Scott Benner 30:33
that it's and of course, you can make this a sort of assertion about nearly anything and anything. Yeah. Right. So had I not bought a waffle maker? Maybe I'd be 10 pounds lighter? And maybe, maybe I can't say for sure. Well, okay, so. So you would let it you would let diabetes be taken away, which I don't think is any great surprise to anybody. Yeah. But it would be a crazy impact on a lot of who you are. And, and so how do you think who you are, because the diabetes is impacting how you're raising your your really cute kids.

Colleen Ngyen 31:11
They come with me sometimes for camp, they see that work that we do. And I think that is important. And they actually just went out yesterday, I went on a run to job off supplies to a woman who was in a domestic violence situation and had to get out fast and didn't have any influence. And so, you know, they come along with me for that sort of thing. And I think me having diabetes and help being a part of the diabetes community is, is good for them to see. Other than that, like, I mean, they like to look at my dexcom my, my daughter, especially last, what's your color right now?

Unknown Speaker 31:52
She like yellow and red. Yes. Yeah.

Colleen Ngyen 31:56
And like yesterday, she yesterday, she actually like with emotion said, Oh, it's yellow. It was like, your three. You know what mommy's blood sugar? Like when I was three, I felt it that's different. Like, you know, he he saw my blood sugar and knew that I was not happy about it.

Scott Benner 32:13
Where do you sit with the idea? Like when you think about your kids, whether or not they get diabetes or not? I'm assuming you've thought about that, like, what is that? What's that initial feeling with you? And you think about I wonder if this could happen?

Colleen Ngyen 32:26
Yeah, I mean, my first instinct is do to do everything I can to avoid it. And, you know, there's all those statistics, you know, all these different things that they say, increased risk. And I tried to decrease risk as much as possible, like, I breastfed them, you know, they got their vitamin D, and, you know, pretty basically all of that, and I signed them up for trial net. But then I know that their risk is a little bit higher. It's it's actually not too far off. Right. So many other kid. But But if they got it, I mean, they're in the right place. Yeah, you

Scott Benner 33:03
would know what to do. That's, yeah. You're two generations into it. Now. Basically, you've got your mom behind you still? Who has incredible understanding of it, and then yours? Yeah,

Colleen Ngyen 33:12
I think it would actually be harder on my mom than it was.

Scott Benner 33:16
Do you think your mom feels any reasonable blame about your diabetes?

Colleen Ngyen 33:22
You know, I think she does. Because when I talk about that, when I like I read the diabetes rising. And I tried to talk to her about it. She did not want to hear it. She didn't want to hear anything about it. And it was just silly to me, because, you know, there's absolutely nothing she could have done. But yeah, she did. She definitely does.

Scott Benner 33:43
Yeah, me My wife has her side of the family has different endocrine issues, but they're the female people in their family. Excuse me. And I know that that feels like her fault to her. And no matter how much you say to somebody, look, there's no fault in this, you know, yeah, it's not it's not our fault as a decision. You know, even if I stand up and decide to, you know, go get my car and hit you with it. That's my fault. I've done that. Yeah. If we have an accident, maybe it's nobody's fault. You know, and so she can't. I mean, she does a good job of living, not thinking about it constantly. But I know it's been a burden to her at times.

Colleen Ngyen 34:20
And my son actually has a little Lego autoimmune skin disorder. And even that did give me a little, I felt a little, no one say guilty, but like, you can't help but think they're like, Oh my gosh, like, I gave that to him. And it's

Scott Benner 34:36
no different than when you look at your kids and they have your eyes and you're like, Oh, my eyes. Yeah, you know, and then you go, Oh, my God. Oh, my autoimmune thing. Yeah, sure.

Colleen Ngyen 34:45
I mean, I just got my fourth autoimmune diagnosis and like, I guess you're bound to have one.

Scott Benner 34:50
What else? What else do you have? What else? Well,

Colleen Ngyen 34:54
I was diagnosed with graves disease in Atlanta High School. And then Eventually, it became hashimotos instead. And then I either have ra or lupus I have like joint pain and swelling. And again, like I'm super in touch with my body and knew I was pretty aware that this was not normal. And I went to the doctor and I saw a rheumatologist and I said it's super early and I'm on meds to hopefully prevent any progression. But

Scott Benner 35:24
let's just say this for it to go in order. Even if I'm assuming it's a doctor named graves who figures it out. He's got to be magnanimous and give it a different name. Yeah. You don't tell people you have graves disease that's like, Well, I have a disease. What did you say to me? Not Not good. hashimotos at least sounds a little sexier. Yeah. And

Unknown Speaker 35:48
to be fair, I'd much rather have graves disease.

Scott Benner 35:50
What is the difference? What is the difference?

Colleen Ngyen 35:53
Okay. Diseases hyperthyroidism. Okay. So like, you know, I lost, I lost a ton of weight. Again, I was getting, you know, annual bloodwork for my thyroid already. So they caught it pretty early on, but, you know, I, I, you know, hashimotos is different. You can't keep the weight off.

Unknown Speaker 36:14
Yeah, it's difficult.

Colleen Ngyen 36:17
Yeah, yeah, ingredient is easy. Like, I was on meds for about a year and a half, and they weaned me off and everything was kosher. And, you know, now I'm on Synthroid for the rest of my life. Right.

Scott Benner 36:26
And so, the, the tough part about Synthroid is the taking it at the right time, and then not. So my way when you're trying to feed, my wife has hypothyroidism she takes and she takes Synthroid. And it was funny, because for years and years and years, she had all the symptoms, but no, but she wouldn't test out of the out of the what they call the safe range, so no doctor can do anything about it. I remember forcing a doctor one day, an endocrinologist, I said, Listen, is this is the medicine going to kill her if she doesn't have it? And he's like, No, I'm like, well then just give it to her. Like, like, what are you doing? You know, and in four days, four days, she started to feel better and and became like an her mood changed and all of our side effects that were happening were just all started to melt away. And I was like, seven years we couldn't get somebody to give her that medicine. Or you know, and then I guess here's as good a place as any to talk about it. Arden's been taking Synthroid now for about two months. So we, you know, Sherry normal, right. And so I don't think I've said it yet. I haven't, I'm going through my memory. I'm pretty sure I haven't said on the podcast yet. announcement dental. So thank you. I'm sure she's thrilled. But so it all started with Arden with just like, you know, we were in between, you know, her last endo appointment, we go every three months, she didn't have any elevated numbers at all to speak of. She had had one elevated number for hyperthyroidism once years ago, but it was there and then it was gone. It was a blip. But at home, she was we started noticing or telling you like our stomach hurt all the time. She's like, My stomach hurts. My stomach hurts. My stomach hurts. We start paying attention trying to figure out what's going on. And then we realized she was going to the bathroom for four and five days at a time.

Unknown Speaker 38:15
Oh, no. Right. And

Scott Benner 38:17
then when she was going, it was her body going, I figured out a way to get it all out of here. And like and she'd have this horrible, you know, diarrhea, and then but their stomach would still hurt. And it didn't matter what was happening or stomach hurt. And I was like what's because we took her back and Oh, got the blood test. And I want to say her number was up around eight and a half. And the doctor said, Well, we don't give Synthroid in till the numbers over 10. And luckily, I had this experience with my wife all these years ago, I was like, actually, you're gonna just do it right now. Yeah, you know, and now I'm such a different person. If me today was in my wife situation with her all that time I would I got her Synthroid on day one. Yeah, so we got it, gave it to Arden three or four days later, she's going to the bathroom on a regular schedule. And and things are starting to get better. She starts growing out, like a lot. It's awesome. Yeah, I'm like cool, like, bad and good. Like, it's hard to know how to feel about that. Like, you're so excited that you worked it out. Yeah, sad that it needs to be worked out. I guess. So.

Colleen Ngyen 39:25
Yeah. My mom was really upset when I was diagnosed at first and I said, it's just, it's just a pill I have to take like, this is nothing compared to what I've been dealing with like this is I can't tell you how many how many parents have campers. I've comforted what when they're upset because their kids going on Synthroid. Or you know, they have hypothyroidism I said, you know, this, most of us are

Scott Benner 39:49
Well, I'll tell you what, that's the that's the first thing that in a really long time made me cry again. week to week on the podcast, we talked about how I make small little adjustments to Arden's blood sugar and how I use Arden's dexcom thresholds are low and high alerts to tell me when it's time to bump and nudge and keep things in range. Right now, for instance, Arden's blood sugar is 101. She's actually sleeping and it's pretty early in the morning. And I've been managing things right from here. But earlier in this episode, you heard Colleen talk about a moment in her life where as an adult, she gave herself too much insulin in the middle of the night. Her mother, who was watching her blood sugar on her dexcom share, was able to come to her house and stop her potentially very dangerous low. That's pretty amazing. You know that Dexcom share is available for Android and iPhone. And you can share with up to five loved ones, so you can give access to whoever you want. Go to dexcom.com Ford slash juice box, click on the links in your shownotes. Were at Juicebox podcast.com. To find out more about the Dexcom. Would you like to keep your blood sugar at 101? As easy as I'm doing it? Would you like to have the comfort of knowing that somebody else is aware of your blood sugar? Would you like to be able to see your kids blood sugar while they're at school or outside playing? I'm asking a lot of questions I think I already know the answer to I think the answer is yes. You would love all of that. So get started find out more about it. dexcom.com forward slash juicebox with links in your show notes or Juicebox podcast.com.

Well, I'll tell you what, that's the that's the first thing that in a really long time made me cry again. Like and it was just the idea of like two things that got me. It wasn't as much about the hyperthyroidism as it was about the two things that just I was like, how did she get to things like how is that fair? Yeah, you know, that that got me a little bit so I get where they're coming from? Yeah,

Unknown Speaker 42:06
yeah.

Scott Benner 42:08
And at the same time, now, it's been a few months, you know, her stomach. She clearly had had stomach trouble for for many weeks. And so she was a little beat. She's a little beat up from it, and it gets better and better as it goes. But she she needed a time to rebound from it. We actually talked to our pediatrician who just said, Look, this is gonna sound very not technical. He goes, but she's been eating four and five days worth of food that's sitting inside of her. I said, Oh, he's like she's distended. And things are you should like you need to give her time to just yeah, everything for just settle down. Work it out. Yeah. And like, so she's taking like privacy at night before she goes to bed. And she's it's funny, because poor kid. Absolutely. But at the same time you see her do it. And it's just, I don't know, it's part of her routine,

Unknown Speaker 42:55
I guess. Yeah.

Scott Benner 42:56
You know, and I don't think she thinks much of it. I'm sure she's not thrilled about it. But it's also I don't see it crushing her.

Colleen Ngyen 43:04
Well, I I found that I joked that Synthroid, like a miracle drug that it was, it helped me fix things that I didn't know were wrong. Like, what? Like, well, I was tired, but I didn't realize quite how how tired it was like in the bathroom stuff. And, and some of my hormone imbalances, like, once I started taking that for a few months, I felt better, even though I didn't realize how bad I felt.

Scott Benner 43:28
So in fairness, when my wife started taking it, we went back to the doctor, and he's like, how are things going? I said, Well, I had a emergency grave dog in my backyard, but I filled it in. Because, because there were days where she would like I'm like, Oh my god, she's out of her mind. I'm going to have to murder her. And because being supportive, not helpful when that's going on, you're just like, hey, and she's just like, I don't care. And I'm like, okay, help me someone. So you had that going on, too?

Colleen Ngyen 44:00
Yeah, yeah, it will. And after, after I had the twins. I was my doc kept me on the same amount of Synthroid and I went super hyper thyroid. So she took me off of it and then all of a sudden I went and like totally hypo like, I don't even remember what my numbers were but it was outrageous and which is weird because I was still losing weight, but I had just had twins. So anyway, I my husband couldn't believe how much better I was how much happier I was. Once I started taking it again.

Scott Benner 44:33
Yeah, I think what we're seeing with Arden is first her her gi issues are clearing up Yeah. But they say that, you know, it's a lot of growth is really an all the sudden like, every time I look at her She looks taller. And I'm like Geez, I wonder how much of this had to do it. But the other thing the one thing we don't talk about is, is that in the summertime, Arden played in a massive amount of of softball, but she also slept a lot too. Yeah, so she'd sleep in like for real sleeping. Yeah. And, and now I'm thinking, I wonder how much of that is that as well? Because I always joke with a teenager. Yeah. Well, that's the other thing is hard. Because I've always joked my wife's been tired since I met her. But I've, you know, absolutely felt like that, like, forever. You know, she's my wife and sleep till noon. If you let her, like, you know, she doesn't if she doesn't set an alarm. She, you know, we used to joke with her like, four in the afternoon. I'm like, you've been up for four hours. Are you okay? Is everything good? And it's but it's so unfair. It's such a, I was gonna curse them, but it's a bad way to live. Yeah, you know, and, and it's not something that doctors are really good at. I mean, look at look at all the improvement. Arden's had in a short time, the doctor didn't want to give her the medicine.

Unknown Speaker 45:51
Yeah, that's nonsense,

Scott Benner 45:52
right? Because you, but because she didn't cross a certain number. You know, what, like, eight and a half is not normal. You know, you know, you she was significantly higher, just didn't hit some therapeutic level there.

Colleen Ngyen 46:04
And she's clearly displaying symptoms, like,

Scott Benner 46:06
and I go to a really good Children's Hospital for her and technology. And they still were just like, Well, you know, at this number. Now, if they didn't fight us when I said just give us the medicine. It's not like she's like, No, I can't she's like, okay, I'll set it here. Again. It was that easy. But she wasn't gonna do what her own. She wasn't going to do it too. She hit that number. So that's interesting. All right. Well, not unlike most of the episodes of the podcast, we've gotten fairly far away from the initial question. Yeah. And whatever. It doesn't matter to me. So. Okay, good. Yeah. So let's, let's let's just head down a completely different route. So what are your parameters for like, what do you see as a successful day with diabetes? Like you do? Where do you set like, your thresholds for your Dexcom? For instance, like

Unknown Speaker 46:56
70 to 180.

Scott Benner 46:57
Okay. And when do you react to your blood sugar being over? Whatever?

Colleen Ngyen 47:02
How do you? Um, it depends. I'm not as not as strict with it as I was, because I'm terrified of being low right now. Okay, because I'm home with my twins. And I have to drive a lot. But

Unknown Speaker 47:20
yeah,

Colleen Ngyen 47:20
I don't know. I, I try to follow the insulin on board. I had to have it for a while of stalking. Because I get a little too in order to know about it. So I backed off on that.

Unknown Speaker 47:33
Okay, well,

Colleen Ngyen 47:35
I was stalking and then crashing. Okay. without you being pregnant, I had to be an alternative.

Scott Benner 47:42
So because they want your agency super low when you're pregnant, right? Yeah,

Unknown Speaker 47:46
I was five point. Right. My point. Yeah.

Scott Benner 47:51
A lot of lows or

Colleen Ngyen 47:55
nah, in the beginning, yes. But not towards the end, then

Scott Benner 47:58
you figured you kind of fit got it straight and everything. So what what goes into a five to eight, one c? Is it an incredible amount of the attention to detail for you?

Colleen Ngyen 48:07
Yes, his timing was big. And living by my Dexcom. I don't know if I could have like, my mom said that you could have done it without Dexcom. But I didn't have to. And it helped a lot. It made things a lot easier. Guys, you know, always had snacks on me Just in case, I, I wouldn't say I ate low carb, I only ate carbs that I knew. I only like I didn't eat pizza. Pretty much throughout my whole pregnancy. But I only encountered carbs that I knew exactly how they were going to react and how I could treat it. Gotcha.

Scott Benner 48:41
Yeah, yeah, I think sometimes. Because we talk on here all the time in the way I do, you know, handle Arden and sweet, I just sort of have the bumping and nudging method, like I keep these close tolerances, and then I just try not to leave them. And it takes it takes less insulin not to leave them. And because of that, then you don't see the lows, because you're not you're not crushing yourself with insulin all the time. Mm hmm. And so, but at the same time, you're not wrong. It is you know, it's effort, right. So I see other people doing it, like, you know, the person I was talking about earlier about, you know, trying to, you know, figure out cereal, like she'll she's gonna figure it out. She did. It's actually amazing. The graph is stunning. Like, I was like, Wow, you really got that straight. But I don't really see it as much about like, okay, now every day I eat something like this. It's always gonna look like this. I always think that more is like not now she knows how to handle that. Yeah, you don't mean like that now can now maybe she can take that information and translate it to a different food that's difficult or? Yeah, I don't think of it as much as about this attempt to be perfect. I just think of it as having this information that you can use to, you know, fight the fight.

Colleen Ngyen 49:56
Absolutely. Yeah. I mean, I'd say a good a good day. for diabetes is when things go the way I planned.

Scott Benner 50:04
No matter what, that's right. And so and so I see you brought up something that I think is really interesting because what like when we get back to the initial point when I asked people would you want to take diabetes away? And some people were like, Well, you know what, though, I also had that thought back, remember, I was talking about the fear of like doing like being aggressive with your insulin when you're alone? I couldn't remember if that was the thing I talked to you about, like, so we talked about being bold with insulin all the time on the podcast. And then some I do hear from adults who are like, it's hard to do, because I'm by myself. But But you're Yeah, you're not by yourself. But you're. You have kids. Yeah,

Colleen Ngyen 50:48
sure. Yeah. I'm caring for two kids, sometimes three kids, because I have a stepdaughter, too. Okay. And, yeah, I have, and I have to drive her back and forth to school. And I have to be able to do that. I can't, it's hard to take a risk of being low because I need to be able to safely transport them around.

Scott Benner 51:05
Yeah, it's the same fear for a different reason. So if you're by yourself, you're like, well, what if I get too low to help myself? But isn't it funny when you're around kids? You didn't think well, what if I get too low to help myself? You thought what if I get too low? And I can't help them? Yeah.

Colleen Ngyen 51:18
Yeah. You know, it's funny, I always say like, when I was pregnant, it was easy to keep those blood sugar's low, because I was doing it for them. And now I feel like it's hard to keep my blood sugar is low, because I'm doing it for them.

Scott Benner 51:34
Isn't it? Yeah, and no, but in this to two thoughts, they're like, that I'm doing for my kids makes it infinitely simple. Like, you know, no matter what, let's forget the diabetes for a second, just things you think you can't do. You can do. And yeah, but you need to be motivated by sometimes the love for another human being to do it. Because isn't it interesting, the love for yourself? Not enough?

Unknown Speaker 51:58
And no.

Scott Benner 52:01
And I don't, I totally have that too. I was thinking the other day about, I mean, I had the surgery on my shoulder, which is now over a year ago, and I'm finally in a better place with it. And but I haven't moved in the way I wanted to, for that whole time. You know, I wasn't able to lift things, throw things do stuff like that. And now, I want to get back into it. And I can't quite I can't quite find the motivation to handle it. And, and yet, I found myself thinking the other day, it's such a strange and bizarre thought. But my, my son, we talked about the pocket slot my son's been working out trying to find a college to play baseball at and he did. And I actually had the conscious thought the other day, like, I don't want to show up to his baseball games like the chubby dad. Like, do you know what I mean? Like, and I know, that's not why I should worry about my health. But I thought as I thought it Oh, my God is that the thing I could use to motivate myself, like, I don't want to, not that he'd be embarrassed. And not that it's funny when I think about myself, I'm not at my ideal weight. But as I go throughout my day, I don't see myself that way. Like my self esteem is not such that I think of myself poorly. But when I offered today to do the Giving Tuesday for the jdrf. And they were like, well send us a picture of yourself. They wanted us to wear the Omni pod demo, the junior effort. So I am wearing it on the pod demo for a couple days. And they're like, can send us a picture of yourself with the pod. I was like, wait, I got to photograph myself. I was like I didn't No one said that. You know. And if you see the picture on my Facebook page, it'll be long gone by the time the people see this, but somebody said, You look so serious. I'm like, I found an angle. And I was trying not to drop the camera. You know, and it just, but I don't having had all those conscious thoughts, then my next thoughts not well, I should really do something about that, because I'm pretty comfortable with myself. And so but when I thought about it through my kids, I thought well, I probably could do that. Yeah, and that's I don't know if that's sad or not. I can't

Unknown Speaker 54:09
I don't think so. Yeah,

Scott Benner 54:10
You don't think so? Good. I'm glad because it seems a little sad, right? But it's just such a human condition thing. Like it's easier to it's easier to care about somebody else's to care about yourself for some reason. Yeah.

Colleen Ngyen 54:24
I mean, as a parent you I mean you put them first though

Scott Benner 54:29
Yeah. And yeah, I mean even in that like you when you're talking about going to diabetes camps and helping those kids I think I see myself in a way you probably see yourself to like I however growing up affected me. I am really a caregiver at heart like I am most comfortable when I'm helping other people need to know I the people I know who aren't like that seem so much more successful but and then I got thinner By the way, but they're like forget all you people. I'm going to the gym Yeah. Wow, I wish I could do that. And those people are listening right now. They're like, you can do it. You're lazy and I'm like, Okay, I'm sorry. So okay, so you keep this one ad and this and the 70. people listening are like, Oh, it must be killing Scott that she lets her blood sugar go to 180. But I get it. I get that you. I get why. And so you pick the number where you weren't you weren't having lows anymore, but so is it just how old are those twins? They're almost three. No, jeez, that's gotta be exhausting.

Unknown Speaker 55:35
Yeah, yeah.

Scott Benner 55:36
So do you think that once they become less effort, you'll be able to transfer some of that back to yourself?

Unknown Speaker 55:42
Yes, absolutely. Kindergarten. Okay, we put goodbye.

Scott Benner 55:49
Why is everyone crying? Mommy's not crying get out. We've loved you enough. It's so funny. I am. You think it's gonna be easy, and maybe it will be for you. But the day that my son got on a bus, and I had been his and I had been a stay at home dad for every second that he was alive. My wife stayed home from work. She's like, I'm gonna stay home from work today and watch him get on the bus and you know, be there for him when he gets home and like have the whole day together as it that's a great idea. He gets on the bus and we turn around, we walk back up our driveway, and we're standing in our kitchen and I just start crying. My wife's like, my boys like making fun of me like you would think she's getting a camera taking pictures of me crying. This is back before digital. So she's got to go to effort to take pictures. And she's like, Oh, my God, you're like, a mess. And I was like, well, well, I just I couldn't even put it towards him. Like he's been with me. Like every second for five years. Why did we get why do we even let him get on that bus? Colleen? I don't know that woman driving that bus.

Colleen Ngyen 56:50
We're easing into it. They're they're in preschool twice a week right now. Okay, four hours total for the whole week. And I treasure those four.

Scott Benner 57:01
So you have a healthier outlook for these things.

Unknown Speaker 57:05
Okay,

Unknown Speaker 57:05
so what's different having two of them at once?

Scott Benner 57:08
Yeah, yeah. Do you know I'm stopping myself from going? What about 150? Colleen, could we put it?

Unknown Speaker 57:15
I'm okay. Right now.

Scott Benner 57:19
What is that? What is it's funny so? So let me let me ask you a question. Right? You look up and your blood sugar's 130. diagnol. up. You're not getting a, an alarm. But you happen to say it, but you happen to see it. Would you do something there?

Colleen Ngyen 57:35
Ah, if I don't have any if I hadn't eaten or anything like that. Yeah, I would.

Scott Benner 57:39
You would, you'd be like, hey, my blood sugar shouldn't be going up like this. Yeah. Okay. How often does your blood sugar actually gets to 180?

Unknown Speaker 57:47
Oh,

Unknown Speaker 57:47
that's a great question. Depends on the day.

Scott Benner 57:50
Does it sit at one at you?

Colleen Ngyen 57:52
Well, so that drives me crazy. That's the one thing I don't like. So like if it if it's just under that. You want me if it's like 175 right. I don't like that. But, but especially overnight right now. I can't I can't bring myself to bring it down.

Scott Benner 58:08
If it's 175 What's the feeling like? Oh, it's so close. Why don't you just beep so I can do something

Unknown Speaker 58:13
or no, no, like, I

Colleen Ngyen 58:14
mean, if I if I see it, I'll fix it. Right? Um, but

Scott Benner 58:18
you wish you knew. And it just barely gets to the it just doesn't quite get to the point where

Colleen Ngyen 58:23
Yeah, cuz I mean, I look at it pretty frequently. Okay. Oh, it's not like, I sound like I just go, buddy.

Unknown Speaker 58:29
It's interesting.

Colleen Ngyen 58:30
Like, actually, I'm freaking I'm a little tweaky right now. Because right before you called, my dog was on me and she ripped my sensor off. And now I'm like, Oh,

Unknown Speaker 58:41
you don't have your sensor on right now? No.

Scott Benner 58:43
So you in order in the exact same boat? Yes, we are. I just sent her a text. I'm like it because I told you like, Oh, I told her said set an alarm. Right. Meanwhile, she's not really gonna test when that alarm. So, so I sent her a text. I'm like, hey, test, and I get Hold on. And I'm like, okay, that seems reasonable. But that hold on was like nine minutes ago. And so. So then, so then I texted back, I'm like, hello. And here's the thing. I don't want I only wanted a text because I don't want it to be high. If she was getting, I know how much insulin I gave her. I know what her blood sugar I tested. We tested before she left. I gave her some insulin. I didn't give her enough to make her crash. She'd know if she was getting dizzy. She if she was hitting like 65 I'm not worried about her being low. And I'm not even worried about her falling fast. I have enough experience to know that I didn't do something to make her fall fast. If she's gonna drop like crazy on that, you know that thing that happens to you once every 60 days where you're like, wow, why the heck did that happen? You know, that would just be bad luck. I don't I'm not planning for bad luck today. So I'm really wanting her to test so that I can. I want to make sure she doesn't get too high because she's got to have lunch in but you know she's gonna eat in about a half an hour 45 minutes but I do With all the growing she's doing right now, holy yesterday, she came home, her blood sugar was great all day. A little spike at lunch, but it came right back again. And then she gets home, she has a snack. I totally bolus enough for the snack. And then it just starts climbing. I'm like more more I could not give her enough to stop this spike. And before I knew it, she was like 275. And I was like, she says, That never happens to us. So I gave her gave her more and it would move I gave her more like drink this water. And she's sitting doing her homework and more and more and my wife's like, I I really want to go to Panera Bread and get soup. And I was like, okay, like, I mean, whatever. And so she goes out and she says that it gets Do you want anything? And I was like, Oh, here it comes.

Unknown Speaker 1:00:44
And so I was like, I'm

Scott Benner 1:00:46
gonna have squash soup, pumpkin squash soup, and macaroni and cheese. And I was like,

Unknown Speaker 1:00:51
Well, okay,

Scott Benner 1:00:53
and so I'm like, so I'm pushing on this 260 that now it's 260 and I'm pushing, it won't move and it won't move. And finally, finally, finally, finally, my wife's like, Look, I just picked up the food, I'm on my way home. And her blood sugar was still like 260 I want to tell you that I gave her such an obnoxious amount of insulin. I was like, a lot has to work out here. This has to be this like because either This food is going to come home. And I'm she's still gonna be 260 and I'm not gonna have the heart to tell her not to eat it. Or, or I need to get her blood sugar like rock solid falling. You know what I mean? So that it actually worked. But I had to give her so much more than Yeah. And I think it's just because she's growing and they think she's very close to Lady time. Probably not. Yeah, not for this month. I mean for her life. It hasn't happened. It hasn't actually happened yet, but he feels like it's coming. I

Colleen Ngyen 1:01:53
was gonna say that's when you get those weird lows.

Scott Benner 1:01:57
And really just out of nowhere, they just, there's no reason for you to be low and all the sudden you are

Colleen Ngyen 1:02:03
okay, like why am I Why is this happening to me?

Scott Benner 1:02:06
And that happens to you during your period. Yep. Yeah, that's interesting. We did a whole episode with a girl who I can't think of her name right now. It's called Code Red. The episode and all we did was talk about what her blood sugar was like during her you know that time she described.

She described like, four weeks before she can tell when it's coming. She can tell you it felt to me like dealing with your with your menstruation. If you have Type One Diabetes is about a two and a half to three week process

Unknown Speaker 1:02:32
a month. It is it is horrible. Yeah.

Scott Benner 1:02:36
So do you, do you? I'm assuming it doesn't feel like a process eventually. Eventually, it's just

Colleen Ngyen 1:02:44
yeah, I have like different profile my palm I just switch it over.

Scott Benner 1:02:47
No kidding. So so you just you're like here comes switch to it. Yeah.

Unknown Speaker 1:02:51
And well,

Colleen Ngyen 1:02:54
I use a NuvaRing for birth control. And that helps because then it's very scientific of one where I can switch things over.

Scott Benner 1:03:00
Okay, so there's a lot there's a certain day And literally, you change your basal rates and your insulin carb ratios. And

Colleen Ngyen 1:03:05
Yep. And then that's it on low for like a little Yeah, like take the ring out. And then it starts like three days later. That's when I switch it over. Because then I'm below for the next like two days.

Unknown Speaker 1:03:17
I go back. Yes, I

Scott Benner 1:03:18
have twins. I do seven of those rings. Right. So anyway, hey, Arden just tested her blood sugar's 117. So that's all good. I am going to ask her real quick to see if the CGM is ready to be calibrated, which might be and and then we're on our way but Kelly, you and I have been talking for an hour.

Unknown Speaker 1:03:39
This was the like, Whoa,

Scott Benner 1:03:40
did it feel like it? No, it didn't good. That's more authentic like you tried to hone in on my podcast. I would say make your own podcast but soon after I made a podcast a lot of people seem to have an idea. And so and I'm not taking credit for anything I'm just saying find your own thing. Please

Colleen Ngyen 1:04:01
let me know when you want to talk about diabetes camp.

Unknown Speaker 1:04:04
Yeah, yeah, you

Scott Benner 1:04:04
know what let's do that. Which camp Do you work at?

Unknown Speaker 1:04:07
the Keystone diabetic kids camp? Yeah, cuz you're right. You're in Philly, right? I'm in Harrisburg. Harrisburg.

Scott Benner 1:04:13
Oh, so hey, those those school my son committed to Dickinson.

Unknown Speaker 1:04:18
Oh, no way. Yeah.

Colleen Ngyen 1:04:19
Enola like the other side. Harrisburg. Pretty close.

Scott Benner 1:04:22
No, no kidding. Yeah, we've, um, I've only been out there for his visit. And, um, hold on a second. I gotta tell her put the number and

Unknown Speaker 1:04:32
when we're in the same County,

Scott Benner 1:04:34
no kidding. He, he, um, so we'll talk for another second about things. Okay. If you're listening for the diabetes stuff, skip to the end now. And so. So he, at one point had 15 schools that were were interested like that initial interest like and all that meant was your GPA and your grades seemed to fit with us, and we liked the way you play baseball. And it's a long process. of recruiting it really is something and then, you know, then some of them will back out because they'll find kids they like better as players. Sometimes your, you know, your SAP doesn't hit correctly, like, you know, and so teams come away and some more Come on. And, and he had it down to a few really great like good, really good schools you would have been thrown with your kid with any of these schools. And then we started going on overnight visits and everything. And he just he was at Dickinson and I was sitting in a nice hotel room in Carlisle somewhere just thinking, this is it. I just sit here, I guess while he does this thing. And so in the morning, I went to meet him because he had to watch a prat. He was supposed to go watch another practice with the team after after he'd spent the night. And we met there. And he looked at me and he's like, I'm really comfortable here. And I was like, okay, you know, and he had been to some other schools. One of them had coed bathrooms. And here's the quote, I can't completely use the word. So you'll have to insert the word that starts with and is four letters long when I say this, but I had to stand in front of my 17 year old son while he said, Dad, it's weird to take a crap blog while a girl's taking a shower. Yeah. And I was like, That does sound weird, buddy. But he's like, it's like, it's not like it was right next to each other, but we were in the same space.

Unknown Speaker 1:06:29
And I was wondering if that was my alma mater.

Scott Benner 1:06:34
He goes, he goes, I'm not 100% sure I can do that. And I was like, joking. It was like, okay, it wasn't the whole reason he didn't completely love that school. Like there were other parts about it. It's didn't fit with him. But he came out and he's like, Daddy's like, there's, he's like, I really, I think I really want to go to Dickinson. And I was, like I said, that's great. I said, you know, you're at this visit with, I think that day there were, I think the baseball team had three different visit days. And then on that day, there were 13 kids there.

Unknown Speaker 1:07:01
And I said, Look, man,

Scott Benner 1:07:02
he likes all these kids. I said, you guys wouldn't be here if he wasn't hopeful to get any number of you. And I said, so if you're really comfortable. You shouldn't like don't be coy, you know? Yeah. And so I went and sat down and, and from a distance, I watched my son talking to this coach, and then they shook hands and I was like, Oh, my God. That said, I think my son's coming here to play baseball. It was just it was very exciting.

Unknown Speaker 1:07:28
I love Carlisle.

Scott Benner 1:07:30
Yeah. Is it I tell you, I was only there for a day and a half. But it was a it was a nice little town. Like it really was.

Colleen Ngyen 1:07:35
Yeah, it felt really like it up and coming. I would say, you know, they're starting to really renovate and rebuild a lot of that downtown area. Really nice. Yeah, I

Scott Benner 1:07:44
had a really good I definitely had a good feeling there. The campus was great and everything and it fits his academics like it's, it's, he was at one school, that would have been a daily challenge for him. And not that not that. I think that college shouldn't be challenging, but I was like, I don't know, do you really want to just be beating your head against this wall? Like every second you're here? Like, don't you think something should be at least on your level? Not always working hard, hard, hard, you know, like that? That sounds weird.

Unknown Speaker 1:08:13
No, you know, but like,

Scott Benner 1:08:15
he's like, this place really fits perfect for me. Okay, great. So

Unknown Speaker 1:08:20
we're only about 20 minutes away from me. No kidding. It's not a band Brian either. No, Turnpike.

Scott Benner 1:08:28
It wasn't. Okay.

So now for all you other people who don't care about my son going to baseball. In a second. I'm gonna say goodbye to Colleen and then you'll hear the stuff at the end of the podcast. So thank you very much calling for.

Unknown Speaker 1:08:39
Thanks for having me.

Scott Benner 1:08:43
But that conversation was very relaxed. I

like that.

Thank you very much, Colleen for coming on and telling your story. Thank you dex calm and on the pod for sponsoring the podcast, you can go to dexcom.com forward slash juicebox. Or let's do it a deeper voice Miam the pod.com forward slash juice box to find out much more about these wonderful products. If you're looking for a CGM or an insulin pump, I cannot more highly recommend the Dexcom or the Omni pod. Don't forget to back in Episode 174. If you just don't want an insulin pump, check out the pen the smart insulin pen from companion medical Episode 174. co tikki. looky looky gonna be back next week with more of the Juicebox Podcast

Unknown Speaker 1:09:25
tonsa


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