Scott Benner 2/11/25 Scott Benner 2/11/25

#1430 Blue Adjacent

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A firsthand account of overcoming diabetes mismanagement, kidney transplant, and the power of community support.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome back to another episode of The Juicebox Podcast.

Christie 0:14
Hey, Scott. I'm Christy, and I've been type one for 31 years before all the wonderful technology we have here. My grandmother had type two but ended up using insulin and was on dialysis for many, many years before she passed.

Scott Benner 0:30
Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. I know this is gonna sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle, health.org, you know why they had to buy an ad. No one believes it's free. This episode of the juice box podcast is sponsored by the Dexcom g7 the same CGM that my daughter wears. Check it out now at dexcom.com/juice, box. You Juicebox, friends touched by type one's walk is coming up quickly on March 8 at the Saturday at Lake Eola Park in Orlando, Florida. Go now to touched by type one to sign up and register. It's completely free. You're gonna have a wonderful time. Touched by type one.org. Go to the Programs tab, click on Steps to a cure. Hey,

Christie 2:03
Scott, I'm Christy, and I've been type one for 31 years before all the wonderful technology we have

Scott Benner 2:09
here, 31 years. How old are you now? I am. I'll be 36 in October. Wow. You were five. Okay, almost five. Oh, not quite five. A birthday? Not quite five. Yes. How nice? Any other type ones in your family?

Christie 2:26
Nope, my father's mother. So my grandmother had type two, but ended up using insulin and was on dialysis for many, many years before she passed type

Scott Benner 2:36
two. So much so that she was on dialysis. Got you? Do you have insulin resistance? Do you think, like, do you when you look at your needs, you're like, wow, these seem aggressive. Or no,

Christie 2:47
some days it's more what I'm doing throughout the day than what I'm eating and how much insulin I'm taking for it. The other day, you know, I was at 300 and dropped to 54 while working just because of how much movement I was doing. Wow, you know, so it, it just depends. But I have had a kidney transplant myself, so it, you know, my teen years weren't the best. Oh,

Scott Benner 3:12
hold on. We're going to get listen to you laying it out for me. Thank you. We'll do that in a little bit. How about other autoimmune issues in your family, hypothyroidism, celiac, it allowed. There

Christie 3:25
are three of us in my immediate family that have hypothyroidism. You ever

Scott Benner 3:31
get tested for the antibodies to see if it's Hashimotos? No, I have not been tested. Okay?

Christie 3:38
So it's controlled with medication very well. My endocrinologist seems to just be happy with the medication as of now. Do you know what that means

Scott Benner 3:46
when they tell you they're happy and it's controlled well? Do you know what your TSH is? For example,

Christie 3:51
my last one was horrible because I had actually added a new medication to my regimen of things that I take with all of my anti or sorry, immunosuppressants. Immunosuppressants,

Scott Benner 4:05
yes, what are you taking those for? But I was

Christie 4:09
immunosuppressants are for the renal transplant. Gotcha, okay. But I had added we govi to my regimen to try and help me lose weight so I could get a pancreas later on.

Scott Benner 4:21
May I say, Can I guess? May I get? Let me guess. Christy, let me guess. Come on, let's, let's have some fun with your health issues. Of course, it slowed down your digestion and threw off your medication. I'm

Christie 4:30
not quite sure if it was a mixture of things. I ended up having what I was on it for two months, and then I went to get month free, and I just had awful symptoms, so they told me to hold off. But my TSH was way off, my immunosuppressant levels were off, and my kidney function had dropped dramatically, and then I had ketones with perfectly good blood sugars because I just wasn't having the insulin needs because I was hardly eating. How

Scott Benner 4:59
does it. Doctor not say, Hey, you're a person taking a number of medications orally. They're very important to you. This medication is going to completely change your absorption, your digestion. Maybe we should pay attention to that. That's fascinating. I know that doctors are still getting used to glps and everything, but, you know, I've told a story recently on the podcast. I don't know how recently, because I don't know when these come out exactly, but person with, like, fairly aggressive medications for, you know, depression and mood disorder stuff, and they're losing weight on a GLP, which is great, but their mood stuff is going haywire, and immediately their doctor said, oh, yeah, this is probably through, you know, because absorption, and it certainly was the medication that you're taking, especially orally like that, right? It gets changed. The absorption gets changed. That's interesting. So people using glps and thyroid medications should take a look, because you might end up needing a larger dose or who knows what, but it was really working for you, huh? You were barely eating. Yeah. Did you lose weight?

Christie 6:07
I lost 15 pounds in the two months that

Scott Benner 6:10
I was on it. That's excellent. But then you had to come off it, right? Yes, I

Christie 6:14
am indefinitely off any sort of medication like that. I'm not going to take the risk of losing my kidney to lose weight.

Scott Benner 6:21
Oh, sure, no, that's an obvious trade off you don't want to make. But the

Christie 6:25
funny thing is, is I had four different teams sign off on me taking it. Yeah?

Scott Benner 6:30
Well, because people can't think that was my original point. Chrissy, you get people here you think are helping you. Just

Christie 6:36
yeah, my primary care, and then my primary care is Ma, three,

Scott Benner 6:41
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I did because I had awful

Christie 8:08
symptoms, and so after two weeks and the symptoms didn't subside, I ended up having lab work done, and found that all of my numbers were off, so I immediately panicked and called my team, and I'm like, what's going on? So my endo was just like, you have ketones. Your sugars are fine. You're not eating enough, so let's take you off it and see what happens. And then I got my kidney function test back, and I was like, Nope, I'm not going back on it. I'd much rather live with a healthy kidney than losing a few pounds.

Scott Benner 8:45
I don't want to blur lines here between me knowing something and me being an idiot on the internet, the ketones could have just been like starvation. Ketones not necessarily to do with diabetes. So right, right. You might have wanted to keep those ketones because they were probably an indicator that you were burning fat, losing weight, but if your medication is not absorbing correctly. Now, the thing that I get confused about, and of course, not with your, I mean, your for your kidney stuff, it's such a different thing, I'd want somebody to study it and have an answer. But there's got to be an amount of that medication you could take that would offset the absorption issue. But who knows what that is, and you don't want to be the testimony for that, for certain. No,

Christie 9:24
no, definitely not. Yeah, especially since my sister ended up donating in the paired program for me to receive my kidney,

Scott Benner 9:31
you don't want to let her know that you, uh, you trashed it, yeah,

Christie 9:35
sorry. And there's no extra spare parts just lying around. Yeah,

Scott Benner 9:38
you don't have one in the closet. Not that I want to go down this road, but to complete the thought. I mean, I think everyone who's listening knows that Arden's taking GLP for PCOS, symptoms, insulin resistance, stuff like that, that it's helping her significantly. But she lost an amount of weight that we looked at her when she got home from college after her sophomore year, we were like, Oh, you lost two. Much weight, and, you know, got together with her doctor very quickly. By the way, no messing around, like, put her doctor right on a phone call on video, stood her up like, here she is. Didn't even wait to get into an office, and said, Here's her weight. What do you think? We think she's too low. Doctor agreed. Said, love to see seven more pounds on her maybe. And so we just discontinued the GLP so that she could eat more readily. Gain the weight, and it would give us time to figure out what to do, because the GLP was helping her so significantly. But of course, we can't have it to the point where she's not eating well. So Right? Took a couple of weeks. She gained the weight back. That wasn't much trouble when she, you know, when all of her appetite came back, and then we just started dosing ourselves like Christy. This is probably where I have to remind you that the beginning of every episode there's a disclaimer that said nothing on the podcast is, you know, medical advice. This is something we decided to do on our own, along with our with her doctor. We're buying vials, like clean, you know, new vials, injecting the manjarno pen into the vial and then drawing out an amount of medication with an insulin needle and delivering it that way, but not as much as the pen holds, right? So we're right. We're changing. Yeah, yeah. Well, she's not doing it every day, like I do. Know people who are doing that, by the way, who are taking little bits daily, or every other day, or whatever, but Arden's not a huge fan of the needles, so once a week, but significantly less. It's only been two weeks now, in the first week, she had tonsillitis, really badly. Like, she What's that? When it gets infected, it's called strep throat, right? Yes. So she had that, so I couldn't figure that week. I was like, I don't know what's going on. Just more insulin, and she's feeling better this week. So we're, we're, I'm starting to already see the impacts of the glps on meal spikes and everything. It's kind of crazy, but my point is, is that I think that over time, we're going to see doctors understanding better that, yeah, the pen comes in two and a half. It comes in five. But that doesn't mean that that's what you need, especially if you're not taking it for weight loss. I wish you luck. I hope somebody figures something out with it, because 15 pounds in two months. I'm assuming you were pretty happy, right?

Christie 12:21
Oh, yeah, definitely, because it was, let's see, I had two, two different doctors appointments for transplant stuff, and then they finally said they're like, well, we see an incline, and we wait. We want to put you on hold for pancreas. Need you to lose like, 50 pounds, and then we'll talk about it again. I only lost 15, but I did start this new job, which is my first physical job since having my transplant. Okay, so I'm hoping that the activity, you know, doing it the old fashioned way, Scott activity, and watching your your diet, okay, so I can get back on active on the list would be great. Yeah, yeah. It would be. It would be amazing, of course.

Scott Benner 13:06
I mean, you're already taking the the immunosuppressant drugs, right? So why not grab a pancreas? Is that the idea? Yep, yeah. Okay, so let's go backwards a little bit. You're four, almost five years old. You're diagnosed. This is definitely like regular and mph time, yes, if

Christie 13:23
I remember, right? Yes, that was, it was in 1993 Okay, so, and then a few short years later is when I think they changed me to like Novolog. Which one's the orange one? I never remember. They're the same thing to me. Is it humologue? So I have human log and Novolog, and I can use them interchangeably, which is nice, because I do know some people that are like, Nope, they're not the same. My body doesn't absorb it the same. I have to take more of one over the other, yeah. But of course, insurance dictates which one we're allowed to have, so

Scott Benner 13:57
takes the one they give you situation, yeah. Okay, so you start off very young, probably for a little while doing it really old fashioned. Eventually you get faster acting insulin. But what did you mean when you said things didn't go well when you were younger and it led to your kidney issue? Like, what was your life like? What did you understand about diabetes and what was your daily management like? So

Christie 14:17
when I was four from my diagnosis, the only thing I remember is the blood draw and my dad wanting to knock the guy out because he stuck me like six different times. But after that, you know, my parents had reached out to my friends parents and said, Hey, daughters, diabetic now, but she would still like to do normal kid things. Do you have interest in learning about it. So my parents actually taught a few of my really good friends, parents all about how to help, how to dose, I can inject myself. So that was one of the things that I was really drilled into my head, was Do it yourself when you're this young, that way you don't struggle with it later. Or not. But

Scott Benner 15:00
did you actually struggle with it? No, no, no. Okay, so

Christie 15:04
I, you know, we had one of those. It looked because I was using injections. Obviously, I had one of those little injectors that looked like an airplane that you could put it in, the needle into, and then you do the button on the side, just like you would place an infusion set nowadays.

Scott Benner 15:19
Oh, interesting. I have never, nobody's ever brought that up. Do you know what it was called? I

Christie 15:23
couldn't tell you. I don't even have it anymore. If I had it, I would gladly send photos for

Scott Benner 15:28
you to post. Oh, that'd be crazy. Yeah, no, I've never heard of that. Actually, it was wonderful. So you could do your injections, but is it possible you weren't using the right amount of insulin?

Christie 15:39
Well, when I was first diagnosed that was all on my parents, like they would tell me what to do. In my teen years, I had a rebellious stage where I said I'm over it. I want to be normal, and I just quit pretty much taking care of myself. And the Medtronic pump that I was on at that time was pretty much the only insulin I was getting was throughout the day, but not meal Bolus or anything. You

Scott Benner 16:03
were just getting your basal through the pump. Yep. How long do you think you went on like that? Did your parents know it was happening? My

Christie 16:11
parents knew some of the neglect that I had for taking care of it myself, obviously, being a rebellious teen, they can't really force me to do it without holding me down. But that was never a road we went down. They said it's your choice. But at the same time, they would always ask me, have you taken your insulin? Are you checking your sugar? And that was another thing I wasn't doing because I did not have a CGM back then. You weren't using a meter. Maybe once or twice a month, I would check myself just dosed up of how I felt. It was awful, right?

Scott Benner 16:44
You're keeping up with the pump and it's running your basal profile, but you're not bolusing at all from food sometimes, but very rarely. Yeah, can you, in hindsight, tell me why sometimes you wouldn't, sometimes you wouldn't. Or do you not know

Christie 17:02
the way I felt? If I knew that I was getting too high and my stomach started to get sick with the ketones and all of that, I would finally take an injection. But it would take getting to that point before I would do you

Scott Benner 17:15
remember ever having conscious, like internal dialog about this, like, if I just did this sooner I wouldn't feel sick or I'm trying to understand, like because you're doing something, why not do something that stops you from feeling bad, instead of something that stops you from dying? Because that's kind of what you were doing, right? I

Christie 17:35
actually had an experience at the hospital where they my sugar was too high, they freaked out. And they were like, well, you're not taking care of yourself. You're pretty much committing slow suicide. We actually want to put you in intensive therapy program. I'm like, I'll do outpatient, but I'm not staying here. So it was about eight years that I was doing this, that I was hardly taking care of it myself. But finally, you know, I grew up and, you know, turned 21 and I could drink. And I figured at that point I'm like, Well, I'm not going to be stupid and drink and drive, so I might want to take care of myself the same time so I don't make stupid choices. You know, your sugar gets too high. You get the cloudy, foggy brain. And you know, you just, I have mood swings when I'm high. So I was always angry, yeah, so I finally started taking care of myself. And then, you know, my a 1c was back in an almost normal range. I was at an eight when I was getting there, but it took me getting pregnant with my 11 year old son now for me to actually, like, step up and do everything I needed to

Scott Benner 18:46
fascinating, Christy, I'm never gonna stop being fascinated by the same story coming out of like humans mouths over and over again. I didn't take care of myself. I couldn't find the, I don't know, the motivation to care whatever it was, right, like I was angry, and then all of a sudden, it's I either want to have a baby. I'm having a baby. I met a person. I want to be healthy for this, it's always for someone else that people seem to be able to pull it together. You ever talk to a therapist about why I'm so sorry, it's gonna come out weird, but why you didn't care enough about yourself to do it? No,

Christie 19:20
at that point I was I'd been on antidepressants since I was like 13, and now we're talking about drinking age. And you know, when I was pregnant with my son, I was 24

Scott Benner 19:35
would you say that you were depressed? Or would you say that your blood sugars were so high, that's how you felt like could you have gotten lower stable blood sugars and that wouldn't have been how you felt? Or do you not think that definitely depression? Okay, does that run through your family?

Christie 19:50
I know of one person in my family, immediate family, that it also affects but she's doing well with her medication, and I'm doing well with my. Medication. So it's not like we're two peas in a pod sitting here going, well, we could do this and feel better, better about ourselves. So

Scott Benner 20:07
when you start taking the medication at 13, did depression lift? I don't know the right phrasing for it, or did you still have it? It just wasn't as bad. Just wasn't as bad, okay?

Christie 20:18
But finally, you know they did. I don't even know what the exact term of the test she did for me, but my primaries ma did a, like a gene test to figure out what antidepressants work with you, and what doesn't they they're in, like, red section, yellow section and green section. So by the time she had done this for me, which was just recently, in the last few years, you know, I had been through three or four different medications that absolutely did nothing to me but make me want to jump off cliff. But I finally, at the time, using Lexapro, and that worked for years, yeah, until finally, one day, I just wake up and I'm like, this isn't helping anymore. So that's when we did the the gene test to figure out what ones will actually work with me. So I'm on a new medication, and everything is back to normal, and I've actually been able to decrease my dose. Would

Scott Benner 21:14
you go to Wellbutrin? Cymbalta? Cymbalta,

Christie 21:18
okay, and I know there's a lot of drama about around symbol. So because it's such a strong medication that has a couple of different uses, and they say that the side effects are not worth

Scott Benner 21:30
the outcome. Are you having side effects? I am

Christie 21:33
not, which is wonderful, because there's people that are in a Facebook group that I'm in, that people are literally counting the beads that are inside the capsule to wean themselves off of this medication, because they're having such strong reactions. Wow, I'm like, I'm a lucky one that, no, I don't need to come off it. I've been able to reduce my dose, and everything's working great for me. Did

Scott Benner 21:58
you notice during the two months you were on week ov, did you notice any extra alleviation of your depression? By any chance? No, no, it actually went the wrong way because the medication wasn't working for you, correct? Yeah. I only asked because there's a recent episode where someone talked about glps lifting a lot of of the mental illness impacts that their child was having, and I was wondering, but even if the GLP was helping, somehow, the impact it was having on the other medication was was too significant, you wouldn't have even noticed. Yeah, yeah, I'm so sorry. Gosh, I there's part of me that just wants to pick through that part of your adolescence and try to understand, but I know it's such an unfair question, because I don't think people really know what was happening to them when they were making decisions like that. You know what I mean? And there's part of me that, like you said, your parents couldn't make you, but I mean looking back now with, you know, your sister's kidney inside of you, don't you wish they would have made you. That

Christie 22:56
is why, when I had my transplant, they suggested therapy, because of the regret and the guilt and all of the feelings that come with a major life change. Yeah, I had worked through it, and we were doing well, and then I had a change in insurance, and it's difficult to find somebody that I actually click with that takes my insurance certainly. Yeah, it's tough again. You know, insurances suck, they

Scott Benner 23:21
do, don't they? They really do. Well, listen, you see that you were having issues, right? That different parenting or therapy or something like that might have helped you with as a child, you didn't get it. You figured this thing out a little too late, and you end up with your kidney I'm just failing. Is that what happened? Pretty

Christie 23:42
much, yeah, yeah. During my pregnancy, I ended up with pre eclampsia and noticed my vision changing a lot and having a lot of floaters, and I was diagnosed with retinopathy at that point. And a month after my son was born, I went in and had a little bit of laser in the office, but because I was so young and my nerve endings were so fresh that I couldn't handle it, so all of the procedures I had for that were in an operating room, and that's where I finally realized,

Scott Benner 24:14
hey, you

Christie 24:17
like you could have had a happy, healthy life, but you decided just to give up on yourself and not take the medication, because I didn't know any better. I didn't you know I was diagnosed at four. And I see all my friends doing all of the friend things, and I'm like, I can do it, but then I have to put in the extra effort for the medical side of it, like going to dinner at a new place. How do I carve count this? I don't know,

Scott Benner 24:43
so just don't do it. Yep, it was a lot of that

Christie 24:48
and and then the retinopathy happened, and I I spent the first eight months of my son's life not being able to see very clearly. I couldn't drive until he was born in 2013 August. And in September, I started my treatments. I couldn't drive again until March of 2015

Scott Benner 25:07
so you think the extra stress of the birth and gestating the baby and everything put a lot of pressure on your eyes and your kidneys. Probably,

Christie 25:14
Yep, yeah, because when they they observed me for observation and had admitted me to labor and delivery just to see because I was having symptoms at the same time every night that wouldn't subside. And so, you know, I would go to labor and delivery, and they're like, everything's fine. Your blood pressure is normal, duck, but my I ended up having a maternal fetal medicine doctor because of the type one. And she was like, hey, it sounds a little weird. So let's let's admit you. Let's see what's going on. They did a 12 hour urine, and at hour six, they were like, Okay, your kidneys are shutting down. You have the diabetic retinopathy. Your blood pressure when you were admitted was 199, over 99 we're gonna have a baby either tonight or first thing in the morning. So it was, it was all quick, and

Scott Benner 26:06
were you using your insulin properly during the pregnancy? Yes, you

Christie 26:11
were. As soon as I found out, I absolutely I made an appointment with my doctor, and ended up having to switch because he wouldn't coordinate care with the hospital that I was delivering it. So I ended up switching to a doctor out there. And, you know, we got me on a Medtronic pump and one of their very first sensors that they came out with, but it didn't work with me being pregnant. No matter where I placed it. It wasn't accurate readings.

Scott Benner 26:38
For context, what was your a 1c prior to pregnancy, you know, prior

Christie 26:43
to pregnancy, I was in the nines. When I was pregnant, I was down in the sixes. And then after pregnancy, with all of the treatments and everything, and trying to establish a normal set, you know, after pregnancy, you're still hormonal and all of that, and trying to get levels where they should be was not easy. Yeah. So it took a couple years after my son was born to actually get back to staying in the sixes. Do

Scott Benner 27:15
you know what your highest a once he ever was. Highest was 15.6 you know how many times that happened? Is it like, once or countless, multiple in my teens, multiple in your teens? So you were in the double digit a one sees a lot. Oh, yeah. Okay. Is there anything I want to move forward in the story, but before I do, is there anything that hindsight tells you would have helped you? Like, not like, woe is me, stuff. Like, I wish somebody would have helped me. But like, is there anything that you think right here in this moment, if this would have happened, if someone would have said this, if a doctor would have, if my parents would have, have you had those thoughts? Have you gone through that in your mind?

Christie 27:56
Sometimes I wonder, because when after my son was born, you know, I had seen that doctor for a few years, but she was just like my first doctor. That was, you know, he was my doctor when I was diagnosed, up until I got pregnant, and he was awful because he he would spend time answering his pages while in the room with a patient who has to literally sit there all day long, because they make you see the social worker as a kid. They make you see the dietician as a kid. They make you talk to the nurse and this person and that person. It literally would take me from 10am to 4pm to get out of that office, and I would have to fight to get my doctor's attention to actually do anything. And I felt like he didn't really give a and then I felt similar with the doctor that I switched to while I was pregnant. I had a nurse that was part of my local endocrinology team who had gone to endocrinology clinic about 45 minutes away from where I live, and so I had reached out to her, and she got me in, and I seen a doctor there, and things were great for a little while the health system, when you're calling to schedule appointments, when it's a giant facility, like a university hospital, that you get lost in the system, and that's what I found to be My deterrent from going back there, but ended up there, and I couldn't be happier, because the guy I seen just a few years ago who happened to not retire from seeing patients and the endocrinologist that I have now, they are complete night and day from my previous doctors.

Scott Benner 29:37
You just found the right doctor. Yeah, yeah, that

Christie 29:41
that is exactly how I feel. Is if I had found a doctor to give a and not tear me down every time I walk into the office, because my a 1c, is 15, like, I understand you hate me because I'm a diabetic, but at the same time, give me some freaking encouragement. Man, yeah, I. To live with this, and you don't, I literally wake up and do math to save my life.

Scott Benner 30:06
You have any idea why you were treated that way? Like, do you have any even like feelings like, Is there something I don't mean this this way, because this would not be a reason for a doctor not to do well for you. But is there something about your personality? You visually like anything at all that you think would have rubbed somebody the wrong way and, like, sent them like, I'm not I really want to be clear. I'm not blaming you. This is not like, it wouldn't matter what anybody acts like, looks like, etc. Doctors should give the same care. I mean that I'm trying to figure out, like, why would someone walk into a room see a kid and then just suddenly be like, I'm not going to give them the care they need. He was

Christie 30:44
stretched too thin. Yeah, at the time, there was him and one other endocrinologist in town. And there were many, many, many, many, many diabetes who they had two doctors to choose from, unless they wanted to drive 45 minutes. You know it was they were stretched too thin. And I don't think we had another endocrinologist come in until my original doctor talked about retirement. Do you

Scott Benner 31:09
think it's like Battlefield theory, like, I'll save the ones I can and the ones that are too hard or will take up too much time or too much of my bandwidth, I'm going to skip? Like, is that possible?

Christie 31:19
No, because I, the friends that I have that are t1 in town had similar experiences, whether it was him or the other doctor in town. You

Scott Benner 31:28
know, other type ones in your town that have gone to those doctors that are having significant health issues now, oh yeah.

Christie 31:36
Oh my, if they didn't take care of themselves, the doctor really didn't care. And, you know, I have another friend who, and she's a big, big, big advocate. She, you know, she's in charge of our local What is it now? Breakthrough, don't go changing

Scott Benner 31:52
your name. Expect me to know the new name, but the JDRF chapter is that, right?

Christie 31:57
Yeah, she's in charge of our one want, and she has so many resources. And she then started a support group in our town for the parents of children who are diabetic. And I've gone to a few of those meetings just because I was their kid. You know, at one point, like I was newly diagnosed, this is what I did. This is what I failed to do, and this is how my life has turned out when I did it, it was all without the technology. And now I see like I'm not bashing anybody but the parents that I see comment about, like, the 504 plans, or the IEPs, or, you know, all of that, or having a nurse in the school to take care of it. I didn't have any of

Scott Benner 32:37
that. None of it. Well, it doesn't mean they shouldn't, does it, right? I get that, but to do it without, it's possible, it's possible, but you're making a case that it might not be that possible. So I, you know, like it's, I get your point. Like it's hard, probably to see people complaining about what seems like concierge level stuff when you didn't have basic stuff, right? Correct? Yeah, no, I hear you. I It's got to be difficult. Literally,

Christie 33:04
I went to the office to see the secretary, and she would hand me my little kit with my vial of insulin and my thing. I would call my mother, and she would tell me what to take. Yeah, so she had to be phone available at all times of the day. You know, if my sugar was high and I didn't feel right, I would have to be able to get a hold of her to go, you know, what is my correction? What do

Scott Benner 33:29
I do? I mean, it's just it sucks. I'm, you know, the whole thing sucks. It does. Yeah, your kids, how old now? Like 11. Do you say? Yeah, yep, He's 11. So is it fair to say that for 11 years, you've known how to take care of your diabetes. Yeah, have you been doing it the entire time, except

Christie 33:45
for the first few years after he was born? Because of the hormones and everything, I was doing my best, but I couldn't perfect it. Okay, like right now after my transplant, they want my a 1c under seven, but I'm also on steroids. On the daily I take prednisone every night, and it's really difficult to try and figure it out, to the point my doctor has told me to take ghost carbs because my sugar spikes, but it doesn't spike for long, so having a different basal rate at that time doesn't really help, and it's not always the same time at night. Because of my work schedule, you

Scott Benner 34:21
have a variable work schedule. Your weight is not optimal. You're taking steroids. You're on immuno blocking medications. You're on medication for depression and for thyroid. Am I missing anything? Blood pressure,

Christie 34:38
cholesterol, okay, all of the things, the blood pressure medication right now is just a preventative because of the kidney. Sure. You know, my blood pressure had gone back to a normal baseline after my transplant, but you know, I'm just now getting to year two in November, so it's taken some time for my body to readjust, and lately, I. Been going to the doctors, and every time they check it, it's low. So I reach out to my cardiologist. He wants me to do the daily checks and write it all down for a few weeks and then send it in, and he'll

Scott Benner 35:11
make adjustments. Are you willing to say how much weight you think you need to lose when I

Christie 35:15
started? We'll go v here. Let me preface this by saying my entire life, until I got pregnant. I was under 140 and I got pregnant, and I gained the baby weight, and it took a little while for me to get it off, and I was back to my baseline. But after my transplant, I gained almost another one of me. I was at 221,

Scott Benner 35:40
when we started with govi and I was at 205. Yesterday. How tall are you? Five? Four. Okay, so you feel like you have 6070, pounds to lose. Oh yeah for sure. Okay,

Christie 35:55
I would prefer to get back down to my baseline of under 140 but with the prednisone and the fact that I'm still struggling with energy after my transplant, that I don't know if I'm ever going to get back there, but I will be happy enough to be under 200 but definitely want to get back to where I can get a pancreas so I have to lose the 60 to 70 pounds for sure.

Scott Benner 36:19
Yeah, I'd like to get back to where I was when I was 15, but I don't know how that's gonna go. So your problems right now, this is what you wanted to talk about on the podcast, right? So we're good to, like, pick through this. Is that right? Yeah, whatever. Yeah, all right. So actually, before we start this, how'd you find the podcast?

Christie 36:35
I don't 100% remember, I believe that I had joined another T, 1d group on Facebook, and you've actually interviewed the girl that I became friends with, blue.

Scott Benner 36:48
Oh, of course. She lives in I know we're shooting, yeah, yeah, of course. So we have

Christie 36:55
hit it off. We talk all the time. You know she if I have questions, because, like, I switched to the Omnipod, and I knew she was on it, you know, I had questions. I was like, well, I could go to my friend who lives local, but hasn't been on it very long, and didn't take a whole bunch of care of herself. She was kind of in the same boat as me, but now she's doing very well. She contributes her great blood sugars to using Plexus products. Okay, so to each their own right, I hear, well,

Scott Benner 37:28
blue is terrific. First of all, she's lovely. Yes, she is, yeah, and she shares the podcast with a lot of people, which I really appreciate. I didn't realize that's how you learned about it. Has it helped you? You see it as like, listening to people's stories, which is valuable? Or do you see it as like, there's management care in here, and I, I like to learn about that. There's both.

Christie 37:49
And I'm the type of person that I don't want to learn just one thing. I want all the tips and tricks. Yeah. So what works for you might not work for me, but I still want to know about it, because it could help somebody else that I know that's got t1 you know?

Scott Benner 38:03
Yeah, I feel the same way. I I was surprised one day, this is years ago, when someone said that guy thinks if I do exactly what he does, it'll work for me. And I thought, I don't think that. I thought I'm just sharing what what I'm experiencing, you know what I mean? Like you could, you should pick from it a la carte. Maybe it all works for you, but you don't have to do everything. It's such a weird thing that that somebody would think that I that's a perfect idea to me. Like hear things and decide for yourself. You know, you had your a 1c down for pregnancy with help with the doctor a couple years after the pregnancy, you think you were fighting with your hormones? Does that mean you were having trouble, like focusing on yourself.

Christie 38:41
It was a lot of different things. It was the fact that, you know, I had been going through the retinopathy treatments and being a brand new mom, throw divorce in the mix a year after my son's born, and then, you know, just trying to get back to being baseline with everything in my life. Wait,

Scott Benner 39:01
wait, some guy knocked you up and then watched your kidneys and your eyes explode and left you. Yeah, yeah. He's great.

Christie 39:12
He's a real winner.

Scott Benner 39:15
Oh, my goodness, I'm sorry. You know, every day I get up, I turn this microphone on, I think someone's gonna tell me something that's gonna make me feel good about the world, and then it doesn't happen. Usually, that made me I'm angry. Now I could feel my body temperature go up like, you know what? I mean? Never mind. Okay, well, Jesus, God damn, that made me upset because you're in the middle of a medical issue, and you just had a baby, he couldn't handle it. He couldn't handle it. It's not that hard to be, like, supportive. It just really, isn't you just sort of like, stay there and go, Hey, is there anything you need? Can I do something for you? What would help you want to talk right? Like, isn't that really kind of it? You. Yeah,

Christie 40:00
yeah, it would be great. But people suck. Jesus, all right, some, some, yeah, no, there's no good ones out there. They're lovely

Scott Benner 40:08
people suck. Yeah, there are lovely people everywhere. But, I mean, my God, like, I don't, I don't know. I'm sorry. It's just okay. Couple years after the birth, you kind of like everything starts to coalesce for you. You keeping your a one, CS, they told you under seven. Is that what you were doing?

Christie 40:26
Yes, yes. And I have had it under seven since my transplant. Actually, yesterday I seen my Endo, and I was at exactly seven yesterday. That's excellent. And my my Dexcom clarity tells me I was 7.5 so I've noticed there's a little bit of variable between the clarity app and what actually results.

Scott Benner 40:50
Yeah, like your a 1c can be weighted towards more recent. So if you over the last three months, were more like 7.5 for two months, then in that last month, were more like 6.5 I could see where your a 1c would look more like seven as an example. Yeah, yeah, yeah. Tell people what you're doing right now to keep your a 1c at seven. Like what I mean, like functional steps.

Christie 41:11
I'm actually taking care of myself. I mean, I Not gonna lie. I do still indulge in some chocolate now and then, but I am watching my portions. I'm watching, you know, are they the complex carbs? Are they simple? You know, do I need to extend this Bolus, which I never used before, and I know that with the OP five that we have to put it back in a manual mode to be able to extend a Bolus, which on nights that I eat a ton of pasta or a lasagna. Obviously, I'm going to do that. But you know, even when I order pizza, now, I'm ordering a thin crust with armed garlic sauce instead of marinara, and I take half the insulin I would for a regular pizza, yeah,

Scott Benner 41:55
just little less dough, little less cheese. Big difference, right? Yeah,

Christie 41:59
yeah, I'm taking my medications. I have to take them at a time to interval because of the immunosuppressants. So every 12 hours, you know, I wake up, I get things around. I take my medication, typically between 930 and 1030 in the morning, and then at night, I take them as soon as I can, if I'm home, if not, I'll take just my immunosuppressants to work. Take them between 930 and 1030 okay, but at the same time, I'm also trying to focus on I have to take the prednisone that's at the 12 hour mark, so I need to take a couple extra units of insulin. I know it's not practical, but the doctor was like, there's not really much else we can do but the ghost carbs to try and combat that. And it's not every night that I shoot up to 300 with the prednisone. It's a lot to try and figure out. Like, what did you have for dinner? Is your blood sugar going to spike in a little while because of dinner? And then do you need extra on top of that for the prednisone? Or, you know, if I just eat lunch meat and a piece of cheese, you know, just to keep myself steady for the night, I don't have to worry about that giant spike to 300 it might only go to 215 Okay, with the prednisone. So there's a lot of overthinking everything. To do it, I have to be thorough and continuously make sure that I'm doing it properly, and getting everything in on time, and then assessing how things, you know, might go from there, right? Because, obviously, it's not an exact science. The wind is blowing from the west, you know, there's it rained for a whole two seconds earlier, and my blood sugar wants to spike just because

Scott Benner 43:41
of that sort of sounds like, right? It just, it just feels like everything, yeah, everything's making it move. Yes. You're seeing where the food's impacting it and how your medication is impacting it, and you're trying to combat it. You're not just staring at it and going, well, I guess this is what happens, right? What's the prednisone for? Again, I think you told me, but I don't remember,

Christie 44:00
prednisone is part of it's the steroid that's part of the immunosuppressants that I take, okay,

Scott Benner 44:07
and without them, just so people who don't know, your kidney is going to fail. Without those drugs, my

Christie 44:12
body will reject my kidney. Yes, yeah, okay, the main one is called Tech row. That's the short term for it, because I can't pronounce the whole word, but that main one has to be between a certain level. And if it's not, you can have something called Tech or toxicity, which, when I was dealing with, we go V, and my labs being off with that number was way too high, which is what drove down my kidney function at that time. Yeah, but has since, you know, they changed my dosage and has since gone back to normal. Okay,

Scott Benner 44:44
so your goal here? Well, let me say this, first, did you go back to work? Had you not been working and you're working now? Right?

Christie 44:51
Yep. So I had my transplant in November of 2022 and it was through the paired program, so my sister didn't match me. But she matched somebody who had a donor, who matched somebody else, who had a donor, who matched me. So there were three donors and three recipients that day. The

Scott Benner 45:08
best basketball trades are made that way. By the way. Christy, you ever noticed that you're like, we need a center. They've got a Ford. That guy over there needs a Ford. I have a set. And you just sort of do that horse horse trading well, so your sister donated a kidney to a stranger so that a stranger would donate a kidney to you, correct?

Christie 45:26
Oh, that's right. The thing is, is my sister is six years and exactly one week older than I am, and so when I was diagnosed with diabetes as a young kid, you know, she always knew that someday I could potentially end up on dialysis, which, thank God I never did. There's a possibility I could turn out like my grandmother, who had type two where, you know, she she lost some toes, she was permanently in a wheelchair, she was on dialysis and still taking insulin, but still had a bowl of Skittles on her table every day.

Scott Benner 45:57
How long did she live? She

Christie 46:00
was in her late 60s, early 70s, if I remember, right, I'll

Scott Benner 46:05
tell you for a living like that. That's a that's not a bad run, you know, right? Yeah, yeah, you would. I expected you to say she passed more than her, like, mid

Christie 46:14
60s. When she was doing dialysis. She still didn't really take care of herself, but she was on dialysis for, I believe, about 10 years before she passed. And that's a long time for somebody to be on dialysis. Yeah, yeah, no kidding, so, but she was never eligible for a transplant, so Well,

Scott Benner 46:36
jeez. Okay, tell me why you wanted to be on the podcast. Just

Christie 46:40
one more person to learn from. You know, this was my experience, and this is the possible outcome if you don't take care of yourself. You know, I know there's millions of parents who have T, 1d kids, and they're like, What could possibly go wrong? Hi, I'm that bad example.

Scott Benner 46:58
Hi, I'm Christy, and this is what happens if you don't take your insulin?

Christie 47:01
Yes, yes, exactly. But the thing is, is I hope that people can learn from my story, because everybody told me my grandma's story and tried to scare the shit out of me, and I still didn't take care of myself.

Scott Benner 47:13
Yeah. Do you think that you thought, oh, that happened to my grandmother. It's going to happen to me. So there's no sense in trying, no, no, you just

Christie 47:23
don't rebelled the idea never pictured, Yep, exactly. I never pictured needing a kidney transplant. I was gonna eventually be okay, but no, You never get out on unscathed. Never. It's

Scott Benner 47:37
like, I say all the time. It's like smoking. Like people always they smoke cigarettes, and they're like, it's not gonna happen to me. It's somebody else. Somebody else gets lung cancer. It's not me. And, you know, once it happens to you, it's too late. And then you're like, oh, okay, well, it happened. And then you feel like you need to tell somebody else so it doesn't happen to them. That's where you're at, yeah, yeah. Well, it's nice of you to do. I appreciate it. And you certainly haven't done it in a scary way, and I appreciate that as well. You're just telling your story about what happened. Well, you were never on dialysis. Is that correct?

Christie 48:07
No, so I was lucky enough to catch it in time to where I wasn't having a whole lot of symptoms, like I had a little bit of the leg swelling, but it wasn't to the point where I couldn't stand all day and, you know, have divots in my legs from from the swelling.

Scott Benner 48:26
Yeah. What's that called? Pitting edema? Yes, yes. You know, he

Christie 48:31
put me on the preventative medications to kind of help what function I had left. And then was like, Okay, it's time to refer you to transplant that way. When you need one,

Scott Benner 48:42
you'll already be on the list. Okay, so I was on the list,

Christie 48:47
and it was 100 and 144 days from the time I was listed, active to the time they found a potential match in the paired program. Not bad at all. No, not at all. I was extremely lucky. And in that, you know, it was, it was really fast. And I, you know, I always worried, like, Okay, I can't get my sister's kidney. She's got antibodies that I don't have, or I have antibodies fighting her. I don't remember which one, but she got a phone call, actually, on my birthday in October of 22 and she text messaged me, and she's like, it's not 100% confirmed yet, but happy birthday. I got your kidney. I found

Scott Benner 49:31
a lady who has a kidney for you. I'm gonna give it to her somebody, and she can Oh, well, it's good birthday. Yeah. So Christy, I don't know how much of the podcast you've actually listened to, but I grew up with a friend who was diagnosed with type one when we were in right at the very end of high school. He's gone now, you know, he was on dialysis the end of his life. He died of a heart attack, like as you're telling your story. I think Mike was taking his insulin, but he just didn't know how to do it, you know? And. He is a bright guy and a thoughtful, lovely person, and everything else that you would want in a, you know, in a friend. And he shouldn't have been overwhelmed by this, but he definitely was. And I think that the more time that goes past, and the worse your health gets, and the more you're foggy when you're high and irritable when you're low and nobody's helping you, you don't know what to do. I can see how it could be like, like getting knocked over in the surf, you know, and just being tumbling through the waves and not knowing which way is up and and just maybe giving up. And, I mean, I guess thank God that that neck got you pregnant, because it sounds like it might have saved your life, you know, I wish somebody would have got Mike pregnant, is what I'm saying, and he would have thought that was very funny. So I don't have any trouble saying that. It's such a shame, you know. And I put out the Grand Rounds series this year to try to impact this, and I know it's not going to help as much as I needed to, but doctors don't understand that a couple of bad words or a weird look or disinterested, you know, checking your your messages during a during a, you know, a conversation with a kid could mean that 30 years later, that kid doesn't have a kidney and is on prednisone and can't lose weight. And you know what I mean? Like, I don't know that they know that, but I wish they would listen. I wish they would hear your story, you know what I mean, and say I got to do better at this, or I can't have a bad day. Like, I don't get to go to the doctor's office and be distracted today, like this kid needs this, and if I can't give it to them, let's find somebody that can, because otherwise this is a real possibility, you know, down the road.

Christie 51:49
And I think a big help in a lot of my experience anyway, is that the follow, the follow app that we have is amazing, like my mom used to hound me all the time. What's your blood sugar? Are you taking your insulin? But I'm almost 36 like, that's not her job anymore, right? But I have a best friend, Caitlin, who has actually been a life saver if she gets an urgent low for me, if I don't contact her within, you know, 510 minutes, she is on the phone, calling my mom, saying, what's going on? Where is she? She needs help.

Scott Benner 52:27
That's excellent. I swear to God, it's it. People need support. Without her

Christie 52:33
doing that like ever in my life, I've only been unconscious twice, and once it was once when I was seven, and once, two summers ago, and she had messaged me and said, You're really low. Are you okay? I messaged her back, but it didn't make sense. But because I had messaged her back, she thought I was okay, and I ended up waking up to, I think there were two paramedics and two firefighters in my room sticking me with Dex 50 in an IV, and that's when we came up with the plan. Like, if I don't make sense, if I don't answer you in a certain time, call somebody who knows what's going on and where I'm at. Okay, my parents know where I'm at because they help watch my kid when I'm not out and about with him.

Scott Benner 53:20
I think that support, I don't care how old you are, and anybody who would say you're an adult, take care of it yourself. Like, honestly, for me to go yourself right? Like, some people need help and and even if they don't need help, helps nice and it alleviates a lot of this, like excess pressure and stress on people like Arden just moved into a different dorm room this weekend, and it's a key card to get into the room. And then once she's in the room, it's a two bedroom, then she goes into her bedroom, and her door closes automatically and it locks every time, oh no. And I'm like, my wife and I are driving home. We're like, that's not okay. Is there something we can do about that, or is she just locked in a box every night by herself? You know what? I mean, she's trying to assimilate to the new school, and we're letting her, obviously, like, have a couple of days, but this is the thing we can't, like, we got to get back to this, right? You know, we absolutely have to figure out what to do about this, because she needs those other two girls in that other room to know how to like, to be able to get in there if they have to. And you say that to her, and she goes, No, I'll be okay. And I know she thinks that, and she probably will be, unless she's not. And then what, you know what? I mean, it's scary. Yeah, it just sucks. Like it sucks. You have to think about it, and it's nice to have somebody else helping you think about it. Now you have to be willing to let them, you know what I mean, right? But that's another story, I guess that's just right, yeah, that's growing up. Honestly,

Christie 54:54
it's literally been since my divorce was finalized that she was like, Okay. Let's, let's do this. I am now your person. You know, I'm gonna download the app and we're gonna have this plan, and now, you know, if I notice that I'm dropping I'll message her and be like, This is my treatment plan. This is what's happening. You know, I've got fruit snacks on board. I've got juice, I've got a thing of glucose tabs. I have my G VO, you know, I've got all of this handy, but this is what I'm treating with right now. You know, if I end up treating and I'm okay, but I'm still lagging a little bit where it continues to drop before I actually stabilize, I will message her and say I've already treated. It's just waiting to catch up. This is what my finger poke says, excellent, you know. And she, she works three jobs, and she still does this for me, like she, she is my person. Always will be, always has been. It's life changing to have somebody who actually cares, who wants to learn, like I've taught her how to carb count, you know, certain things. Or this is why I take this much insulin for this meal, or this is my correction factor. I'm at this number. We want to be at this number. This is how much I take. And she always asks questions. Yesterday, I was talking to her about the will go be in the transplant for the kidney, and then, you know, possibly getting a pancreas later on down the road. And she's like, but do all diabetics struggle as much as you do? And I said, No, there's people who have, you know, they're got tight control. Their tir is, you know, 97% and they eat a keto diet, and I'm like, I work different shifts every day. I have a 11 year old that does not like healthy and I'm not going to make two different meals. I'm just going to watch my portions, and it's a lot, but you do what you got to do, and not everybody has the same experience. And I think that some people don't understand, like, oh yeah, my grandpa's type two. And, you know, he he changed his diet and exercise, and, you know, you eat a spoonful of cinnamon, or, you know, some okra water, and you'll be just fine. It's not the same. I don't have the crayons to explain to people how it's not the same, yeah, but it did need a t1 in the wild the other day. He was great. He's a bread Benner. He was wearing the g7 with the bionic pump. And I'm like, I know you're working, but can I ask you questions? Yeah. So we sat there and talked for 15 minutes about his pump and his experiences. And you know, he's like, Well, how long? And I was like, I was 31 years and I've had a transplant, and just make sure you take care of yourself. It's

Scott Benner 57:46
very nice of you to share that with him. Very much. So So tell me what's going on now you went back to work, and so now you have activity, and you didn't have this activity before, but you're seeing low blood sugars at work.

Christie 57:59
Yeah, like I said, I had even gone to work the other day at 300 because I had just eaten and didn't Pre Bolus, and I still tanked down to 54 and I'm like, but I was on the register for two hours, or I was bagging for two hours, or I was doing a mix, you know, and it's like, it just came back From break, I sat down, my number was fine. I even eat like, two glucose tabs. When I noticed that I'm trending down, and I get to a certain point, it doesn't help. And it's, I think a lot of it is, is the pump is used to me just doing minimal things and not long periods of activity. But then again, when I would do laundry at home before I started working again, I noticed that, you know, if I'm doing two or three loads, I'm dropping at the end of it, and that's because I'm carrying everything going down the stairs back up the stairs, and, yeah, it's a lot of movement that I didn't have after my transplant. So

Scott Benner 58:57
how many days are you working a week? It depends

Christie 58:59
on what they have available for shifts and what needs to be covered for days off. But typically I'm three days.

Scott Benner 59:08
My thought is, obviously you're on Omnipod five, and it's probably right about the time it's getting used to you sitting around the house more you're going off and working for a few days, and then you're getting low right? Because it's, it's like you said, you're set more sedentary. It's giving you more insulin. Now suddenly you're moving. You don't need all that insulin. You're getting low. My thought here is, why don't you exercise on the other days that you're not working, so that your insulin needs get matched up? Still minimal? Yeah, right. Because the alternative, Christy, I don't love the alternative for you, which is go the other way with it, which, you know what I mean, like go into manual mode when you're working, or because it's also not going to help you. You know it's not going to help you if you go high then, then the algorithm is not working right. Most of the time, we hear this problem, and we try to find a way to fit the insulin around the problem. Um, I don't know if that makes sense or not. I think you should just do more exercise, because it doesn't sound like it would be a ton. You need it anyway. It's something you're trying to do, right? So do some minimal exercise every day that mimics working, and then let the Omnipod five catch up with your new insulin needs. And then you shouldn't get low while you're at work, is my thought,

Christie 1:00:19
right? And I have plans to do that, but still, I'm building up my stamina to be able to work eight hour shifts, like I went from just doing laundry at home or dishes to physically being active every day. Yeah, that I'm working, and so the days that I'm not working, my body is sore and I am exhausted, and I know that I need to continue keeping up with the moving and everything. I just have to do it in smaller increments. Nothing wrong with that, either. My energy level since transplant has not come full circle. Yeah, and it doesn't help that I've had the weight gain and all of the medication changes, but it's no excuse. I still need to be active. But I did see my endo yesterday, and she was very pleased. And I'm still at seven, and she is fine with that for now. And now that I'm back doing work, she is glad, because obviously we're seeing the lows, but at the same time, being active is going to help me lose some more weight, and all of it. So she made, she made some changes.

Scott Benner 1:01:26
You don't have to lift them out. And I'm not saying that, but Right, just get up and walk. You know what I mean? For 1015, minutes a day, and then try 1520, minutes a day, a week or two later, I understand the necessity. I mean, my wife had long COVID, and probably still does. To some degree, you have to learn to change your idea of what exercise is. Exercise is what it is for you. Like, nobody's saying, like, go run five miles or lift for two hours. Like I'm saying, Get up, move around. Like, if doing the laundry is a thing, then great, spread out the laundry. So you do a load of laundry every day, instead of three loads one day. Like, if that's activity for you right now, then great. Then do just try to do some a little bit every day. And then, not only I think, will that help you, you know, build up quicker, but I think it'll help your insulin level out as well, right? That makes sense. Yeah, yeah. I would try that first honestly, but explain to people, what does exhausted feel like? Like you work for a couple days in a row, and then what happens to you? I

Christie 1:02:27
feel drained of energy like, you know how you see the Energizer Bunny, and he's got the battery in his back, and, you know, with the off brand, he ends up dying in the middle of the commercial. That is how I feel some days. Yeah, where I get off work and I'm like, Oh my God, my body absolutely aches and my feet hurt, and I am exhausted and I can hardly hold my head up. There's nothing there. But right at the same time, I'm also experiencing two to three lows per shift, if I'm working in eight hour shift, you know? So it's like, I'm treating, and then I'm dropping, and then I'm treating, and then I'm dropping. It's a mix of both.

Scott Benner 1:03:03
Sucks. It does. Yeah, I actually have to leave for work here shortly. Do you Oh, I'm gonna have to let you go. Yeah, okay. I don't want to get you I don't want to get you in trouble.

Christie 1:03:13
I'd ask for some time off, but they scheduled me a little sooner. Can you still imagine going

Scott Benner 1:03:18
to work and be like, I was recording a podcast, they'd be like, we don't care.

Christie 1:03:23
They know what I'm doing this morning. I was like, I might be a minute or two late. Wow. I don't want you to be like, well, that's awesome. They are so supportive where I'm working, right of, you know, getting me off of register if I absolutely need to. And, you know, do you have all your low snacks? Do you need anything? You know, it's, it's really amazing when it you come to a new employer and they just understand, I actually found another t1 that I didn't know worked. There

Scott Benner 1:03:50
more support. That's what you're seeing. Yes, yep. She's like, Oh, by

Christie 1:03:54
the way, I've got low snacks if you ever need them. I was like, I've got a pouch full of them too. So, you know, same goes for you.

Scott Benner 1:04:01
We also want to get you not going low, because no reason for extra calories. You know what I mean? Like with this, with the lows, like, not that, don't get me wrong, stop your lows. But we want to get you to a point where you're you're not getting low, so that you, you know, continue to lose weight. Have you ever been through the Pro Tip series, or there is also a series for Omnipod five about how to set it up. Have you seen that content? There's a couple

Christie 1:04:24
of them that I've heard from that series, but I don't have a lot of free time, so usually I'm listening at night, time before I go to bed. Yeah? So I get bits and pieces. Well,

Scott Benner 1:04:36
there's a Omnipod five Pro Tip series about setting up the Omnipod five that's worth listening to because it talks a lot about how it works. And there's also, you're in the Facebook group, right? Yes, of course. All right. So here's this, I like how you said, of course, because it's the only Facebook group to be in if you have diabetes. That's what you meant. If you go into the private Facebook group, go into the featured tab, there's lists of C. Series in there, so you can see what episodes they are. The Pro Tip series is in there, which is a lot about using insulin might might be valuable for you. There's a lot of Omnipod five stuff in there, in the algorithm pumping. There's conversations about Omnipod five with users. There's the Pro Tip series that I made in conjunction with insulin. There's an Ask Omnipod five expert series I also made with insulate. There's a lot of good information in there. It might, it might help you, just like you said, just to have bits and pieces that you can build on,

Christie 1:05:28
right for sure. And you know how blue tells all of her friends, I tell all of my friends, like my new friend in the wild, I told him, I was like, You have to listen. If you don't listen, at least join the Facebook group, because there's so many different resources and questions and answers, and even if something doesn't work for you, you still have that tidbit

Scott Benner 1:05:49
and knowledge. Yeah, no, I

Christie 1:05:50
agree. And that's what I enjoy about being in the Facebook group, is that I see so many posts that are different.

Scott Benner 1:05:56
Yeah, there's no better way to I mean, right now, I don't see through technology. There's no better way to make a community, especially out of a situation with like type one diabetes, where you're just not going to meet that many people in your real life that have it. So you know, to be able to see people from all walks of life, from all areas of the country and the world come together and talk about it, and to see the similarities that they all are experiencing very similar things. I just think it's incredibly supportive and necessary, honestly, to have that kind of community around

Christie 1:06:27
you, exactly like I said, I've met quite a few being in that group that my friend created for the parents and, you know, a support group for adults would be great, but it's just not something that everybody can make time for. You know, everybody has kids in school and work, and it's been difficult, but I actually made a new friend who actually on Tik Tok was sharing her kidney transplant story, and her name is Natalie, and she lives 45 minutes from me. Found

Scott Benner 1:06:53
her like that. You know, I have to tell you, I disagree with people are like, well, there should be an adult group and a parents group into this group, into that group. I'm like, I don't think segmenting you is a good idea. I think I get like you mentioned it earlier, right? It can be frustrating to see a parent complain about something that you know would have looked like icing on top of your cake when you were a kid. At the same time, seeing other different perspectives, but still in the same arena, I think is helpful. It's irritating to you, but if you're not angered by it, and you know what I mean, and maybe it teaches you to expect more for yourself, like those people want everything they need, and they're gonna get it. And maybe that rubs off on you a little bit. You say, You know what? I'm gonna get everything I need. Who knows? Like, who knows how that interaction is going to end up helping you or helping them. Maybe you end up saying back to them, my gosh, like, when I was growing up, like, this would have been a luxury of all luxuries. And maybe they'll think, yeah, we're lucky, you know, like, who knows how that helps? But I think having a ton of people with diabetes, I also like there being type twos in there. People have gestational whatever, right like or loved, loved ones, even like, Forget caregivers. There's a ton of grandmoms in there who's like, grandchildren have type one. They don't have it. They don't take care of their grandchildren that often, but they get to understand it better. I love that about it. I would always make an argument for being integrated and and welcoming and letting everybody who's touched by diabetes be in that space. It's kind of how I think about it. But I want to get you to work. I don't want you to be late, and don't forget to charge your phone again. You said for this, I don't want you. I don't want

Christie 1:08:29
your phone dying. Oh, no worries, it's not gonna die. And then I've got my PDM for the Omnipod if my phone doesn't work, so it's not like I'm not gonna miss my alerts, and I've got my watch on. Look at

Scott Benner 1:08:40
you. All right, excellent. Go get them. Christie, thank you so much for sharing this with me. I really do appreciate

Christie 1:08:44
it. Yeah, no problem, Scott, thanks for having me on my pleasure.

Scott Benner 1:08:53
Today's episode of The Juicebox Podcast is sponsored by the Dexcom g7 and the Dexcom g7 warms up in just 30 minutes. Check it out now at dexcom.com/juice, box. Guys, you want to go for a walk with touch by type one in Orlando, you can do it and you can have a great time. Meet a lot of wonderful people touched by type one.org Go to the Programs tab, click on Steps to a cure and get yourself registered right now for the beautiful walk that's coming up on March 8 in Orlando, touched by type one.org Earlier you heard me talking about blue circle health, the free, virtual type one diabetes care, education and support program for adults. And I know it sounds too good to be true, but I swear it's real. Thanks to funding from a big T 1d philanthropy group, blue circle health doesn't bill your insurance or charge you a cent. In other words, it's free. They can help you with things like carb counting, insurance navigation, diabetes technology, insulin adjustments, peer support, Prescription Assistance and much more. So if you're tired of waiting nine months to get in with your endo or your edge. Cater. You can get an appointment with their team within one to two weeks. This program is showing what T 1d care can and should look like. Blue circle health is currently available in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. If you live in one of those states, go to blue circle health.org to sign up today. The link is in the show notes, and please help me to spread the word blue circle health had to buy an ad because people don't believe that it's free, but it is. They're trying to give you free care if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. It's ready to go right now. And like I said, they're adding states so quickly in 2025 that you want to follow them on social media at Blue circle health, and you can also keep checking bluecircle health.org to see when your free care is available to you. The Diabetes variables series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about travel and exercise to hydration and even trampolines. Juicebox podcast.com go up in the menu and click on diabetes variables. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? The episode you just heard was professionally edited by wrong way, recording, wrong way recording.com, do.

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Scott Benner 2/10/25 Scott Benner 2/10/25

#1429 Gas Station Orange Juice

Three people with diabetes in one house!—navigating diagnosis, pump challenges, lows, adrenal issues, and pregnancy.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome back to another episode of The Juicebox Podcast.

Carly 0:13
My name is Carly. I currently live in a house with three diabetics. I am one of them. My husband is the second, and our six year old daughter is the third. We have another daughter who just turned four, and so far, she's in the clear.

Scott Benner 0:29
Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. I know this is gonna sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle health.org. You know why they had to buy an ad. No one believes it's free. The show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get ever since cgm.com/juice box. This episode of the juice box podcast is sponsored by the Omnipod five learn more and get started today at omnipod.com/juice box. Check it out if you're looking for community around type one diabetes, check out the Juicebox Podcast, private Facebook group. Juice box podcast, type one diabetes. But everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast, type one diabetes on Facebook. My

Carly 2:21
name is Carly. I currently live in a house with three diabetes. I am one of them. My husband is the second, and our six year old daughter is the third.

Scott Benner 2:31
Are there other people in the house besides the three of you? We have

Carly 2:35
another daughter who just turned four, and so far she's in the clear.

Scott Benner 2:40
Obviously a thing you're concerned about. Yes, yeah.

Carly 2:43
I mean, we absolutely test her every now and then. And since she sees us testing ourselves, she requested sometimes on occasion, so we'll give in to her. And so far, nothing concerning. We've also had her gifts and blood work before when she turned to in a study, and no markers so far. So she's good for now, and then we also, in December, we'll have another family member joining us, and 24 weeks pregnant right now, also prolific

Scott Benner 3:09
Carly. Listen, I have you know, it's funny. You the way you set this up just now, you made me think of it differently than I ever have before. Meaning, your four year old wants to be part of the group she does. She feels left out sometimes, and then you're stuck telling her which is the best news she's ever going to hear in her life. You do not have type one diabetes, and you're and you have to explain it to her, but she's disappointed by it. She

Carly 3:34
is, she is. And sometimes she'll say, you know, I wish i i wish i had diabetes like you. And I'm like, I know you say that now, but trust me, be very glad that you don't and and you know, it's just cute, because she's four, and she doesn't, she doesn't understand, but we try to include her in things. So if we're treating a low on my six year old, we'll let her have a six year old too, or something like that. So so she does get a little bit extra candy here and there for treating a little for somebody else

Scott Benner 4:00
so interesting, though, isn't it? Because, you know, you spend your life as a parent trying not to let your kids down, and you're delivering maybe the greatest news and but you have to do it in a way that she doesn't feel let down, right? Yeah, that's really something I want to understand the timeline. So how old were you when you were diagnosed? So

Carly 4:20
I was pregnant with my first who is the six year old diabetic in our house. Her name is Vienna. I was pregnant with her about 23 weeks along. Age 30 How old are you

Scott Benner 4:30
now? 36 Oh, my goodness. And your husband was, how old when he was diagnosed,

Carly 4:35
he was about 15 months old. So he was a baby. He was diabetic when I met him, he was one of the first diabetes I've ever met before. And at the time, I was under the impression, well, you're thin, you're in shape. How do you have diabetes? Because I didn't understand the difference between the autoimmune type one and then maybe the lifestyle or family, you know, right? Genetic. Version of type two. So of course, he was happy to educate me on the difference, and I'm glad I learned the difference. And yeah, so just kind of strange that it's not like we met at a diabetic camp. We didn't meet in a support group. He was the only diabetic when we met and got married and got pregnant with our first child. And then, before that child was born, I had been diagnosed, and I found it myself. I before the glucose test was taken, I was just feeling really off and like, really thirsty and running to the bathroom a lot, which is not uncommon for pregnancy. However, it just felt like something else. And I was very active at the time, exercising five or six days a week and eating pretty healthy, taking care of myself, and I've never actually tested my blood sugar. We had been together for eight years at this point, and I've never tested my blood sugar before. I've been curious, but I'm like, I don't have a reason to check it. Why would I need to? Right? But something in my head, I'm like, You know what? I should really just check in just see. So I used his meter. He was out on a CGM at the time he was doing finger sticks. So I checked my blood sugar, and it was 373 and so, of course, well, that's not right. Let's wash my hands. Let's, you know, check out another meter, because he had three different meters. Sure enough, everyone I every time I checked it was in the three hundreds. So of course, I first thought, well, gestational diabetes. And I'm like, How did I let this happen? I'm so active, I'm so healthy. The next morning, I called my doctor, and she said, You know what? That sounds? Too high to be gestational diabetes. I think you need to see endocrinology. So after having to make this appointment myself with no referral, and being desperate and scared because I was having blood high blood sugars for God knows how long. Yeah, nobody seemed to think it was a big deal. I'm on the phone crying with one of our major hospitals in the Milwaukee area, and I said, Hey, I need to get in. I don't have diabetes. My blood sugar is over 300 and I'm pregnant. What can you do for me? And finally they said, Okay, we'll get you in tomorrow. And I went in, and I think they initially thought, too, okay, this is gestational they had me meet with a dietitian, write down all the things I was eating, how active I was. And after they found that out, they said, This sounds like type one,

Scott Benner 7:21
so you're like, Thank you, right?

Carly 7:23
Yeah, appreciate you listening. That's what I thought. But I had the endocrinologist came in and saw me, and then they ran all the blood testing at the get the get antibodies tested, C peptide tested, and although my antibodies was still, I think on the low side, I think they were like 77 obviously still positive, though, so I was diagnosed on the spot, and met with a diabetes educator that day, and just kind of trying to absorb everything, how my life is going to completely change from the previous 30 years. And I remember pulling into the pharmacy, picking up my prescriptions and just crying in my car, to be completely honest, I had a bag full of medication and pen needles and testing supplies, and I said, How did this happen to me? How I have no family history. I had only known about three type one diabetes in my entire life. How did this happen to me? I

Scott Benner 8:21
do wonder, now that you've had it for a while, is there other you know, have you been able to identify any other autoimmune issues in your family?

Carly 8:27
So we did one autoimmune issue I did know in our family history was psoriasis. So my mom would have, like, nothing serious, like patches here and there, and then I would get the same and then when I was in high school, or just after high school, I got the I got a vaccine, the Gardasil vaccine, and I broke out in full body psoriasis. So I think that it was autoimmune condition number one for me, and then the type one number two, as we all know, they like to run together in with other autoimmune diseases. So so the psoriasis runs in the family. Otherwise, nothing else, no. Type one. Probably. I

Scott Benner 9:04
don't want to sound like a conspiracy theorist, but I think I've got this figured out. Your husband's sperm makes people type one.

Carly 9:12
You know, it's, it's funny. We have joked about that, I bet you like, Is it contagious and not? Not talking about the sperm part. However, he did have two friends, two male friends, just friends in school that also were diagnosed after he was so so not. It took

Scott Benner 9:30
me a minute to figure out why you were being so careful about telling the rest of the story. I was like, that's because my stupid joke. You can see how crazy it is. But then after you recognize that you have type one and he has it. Do you immediately think our kids gonna have it? Or no, my daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day. A since then, that's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once omnipod.com/juicebox, get a pump that you'll be happy with forever. Today's episode is sponsored by a long term CGM that's going to help you to stay on top of your glucose readings the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGMS, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox, to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year at my link, you'll find those details and can learn about eligibility ever since cgm.com/juicebox,

Carly 11:45
check it out. It absolutely crossed our minds. It wasn't enough to stop me from wanting a second right away. We had our second. They're they're about two years, six weeks apart. Our first Vienna was not type one when our second was born, and there was no question. I'm like, we're going to have a second one. I'm not one. I'm not, I'm not that worried about it. I know the chances are elevated, but it wasn't enough to scare me from having more children. My oldest is now two, almost three. Our youngest is nine months old, and and two year olds are intense and crazy, and she's a girl, so I'm like, she's a little crazy, she's got attitude, She's feisty, but she was also having accidents, and she was not herself, and so take out the the meter, test her blood, 250 so first thing I did was cry, be honest. Then I called my mom, and I cried some more, and then I called the doctor, and we got into her pediatrician. The next day, they took all of her blood work. By the end of the day, we had a type one diagnosis. However, it was very early. Her ANC was only 5.9 so we were really, you know, heated on the signs and symptoms. And same with me, when I was pregnant, I was diagnosed at an agency of 6.4 so again, caught very early. I caught it before they even gave me the glucose test. I had it on my counter. Never had to take it. I just returned it. The next time I went

Scott Benner 13:10
in, finally saving some money, yeah, they probably

Carly 13:14
still charged me for it. Oh, I bet they did, but yeah, so, and that was the third type one in our family, diagnosed at two years old. Okay,

Scott Benner 13:21
geez. Are you all like managing similarly, or do you have different pumps? Or how does that work?

Carly 13:28
Yeah, so we all are on currently the the Dexcom g7 and my husband is on the Omnipod five. He does it all in manual mode, though. He doesn't do any of the like the automated stuff. I know you can with the g7 but he never has done it that way. He likes to have control over, you know, when he's punching into the pump, he doesn't want it to go on its own. So, so for me, Well, right now, I'm 24 weeks pregnant, so I'm more in like an insulin resistance phase right now. However, when I'm not pregnant, I'm not taking very much insulin. I am usually taking maybe, maybe eight units a day. Okay, so I'm still honeymooning even after six years. Yeah, I think I just caught it that early. Did

Scott Benner 14:09
you hear that interview I did with the lotta guy? You know, he had type one, but it pretty, you know, fairly low insulin needs. Then they they ramped up, and then they gave him Manjaro for his weight loss, and he's not using insulin at the moment. Oh, wow, no, I didn't crazy. And I mean, not that he won't at some point. Like, I'm not saying that, you know, I'm not saying the GLP, like, cured is type one, or anything like that. But like, at the moment, he's not using insulin, and it's been for a bit. So it's, it's really interesting, because your needs are still, I would say I agree with you. They're low for having, had type one for for that long, like maybe you are. Lada, yeah,

Carly 14:45
I think a lot of times, if you catch it early enough and there's still some pancreatic function. Now, I'm not a doctor. I have no medical background besides just everyday living our life with diabetes, but I think a lot of times it can almost. Be treated like type two, whereas I think if you you can kind of control it a little bit by diet, because if I, if I'm eating a lot lower carb, I take a lot less insulin, the insulin resistance just improves. Now, of course, it's not a cure, and I'm still going to need insulin. I would still take the basal insulin no matter what, but depending on activity or what I'm eating, I can absolutely cut my insulin needs down,

Scott Benner 15:21
yeah. And most people see that, but you're, you see it pretty drastically. Is what you're saying,

Carly 15:26
Yeah, absolutely. I mean, right now, I'm on three times as much insulin as I was before I was pregnant, and that's just the way it goes. And now this is my third time around in this part of pregnancy with diabetes. So I know it's, it goes way up, and then it comes right back down. And then, especially after giving birth, it's going to go way down with nursing and everything. That's what happens every other time. Yeah, but, and then my daughter, she still takes like, quarter units of insulin for corrections. That's how sensitive she is to insulin, usually, unless she's battling an illness. So we, she and I are both on daily injections, just because I don't think the pump makes sense for either of us, because we take such little doses of insulin. So yeah, so we're all on the we're all on the Dexcom CGM. Literally, one of us is on the pod. And so, as you can imagine, three people on CGM there. There are very few nights where there's nobody beeping.

Scott Benner 16:22
I figured the mail comes to your house. There's, like, one of those heavy stickers on the side of the CGM delivery so the mail carrier doesn't hurt themselves. Yeah,

Carly 16:30
the number of those coolers with the ice packs that we grew in six months, it's amazing.

Scott Benner 16:38
Carly's like, listen, we're losing a lot of money in the CGM, but we have a burgeoning Etsy business where we resell ice packs making up making a ton of money. Yep. Well, I have to ask, how much of your day is absorbed by diabetes? A

Carly 16:55
lot, I would say. So my six year old has had it now for just over three years, and in the beginning, it was a lot more like staring at my phone because she's not home with me. She, at the time, was going to daycare. Now, over the summer, she's in daycare, and then in the fall, she'll go back to school. So she's not with me a lot of the time, so I'm on the follow up a lot, but I would say it's definitely gone down over the years, just as you get more comfortable. And we're kind of the family that while I'm a perfectionist and I strive for like, the most perfect blood sugars for her, not always for me, I feel like I'm always putting her like, like her diabetes is more important than mine, because it's your kid, right? Like, you gotta do the best you can for them, I stay very involved, and luckily, our local school that she goes to, they're great. The nurse is great there. She's okay that I'm really involved. We're a few minutes down the road. I can always run there if I need to. So I would say, I mean, I'm checking, I'm checking my phone. I would say I'm probably mostly on my phone checking blood sugars, like than doing anything else. Okay, probably

Scott Benner 17:58
I'm gonna say no, based on his response to an automated pump. But are you following your husband?

Carly 18:04
So I am not. No. I suggested it once before, just because he was having some lows. And I think maybe he was, I don't know if I was out of town or something, and I'm like, Hey, do you want me to or he? I think he was out of town on a work trip. And I said, Hey, do you want me to to follow you and just make sure everything's okay. And because he was having a lot of really senior lows, I never ended up doing it. He just would check in with me, you know, to make sure he was okay. No, I only follow my daughter, and he only follows my daughter. We don't follow each other.

Scott Benner 18:32
Yeah, I was, that was gonna be my next question, would you let him follow you? I would, yeah, if he wanted to. Do do you think he doesn't want to follow you? Do you think he doesn't want to set a precedent? So you start asking about following him again?

Carly 18:47
That might be it. And, you know, he's an adult. I want to, I don't I micromanage so much with my daughter's diabetes and my own I don't want to be calm, obsessive over his blood sugars. If I noticed he's high, you know, like overnight. If I'm treating a low on my daughter or high on my daughter, I'll wake him up. And obviously, if he's low, if he's beeping, I'll wake him up, because he sleeps through a lot of the alarms. But I'm not going to actively help him manage because he he he knows how it goes. He's been doing this for 35 years, so yeah, yeah, I trust him to handle it. So do

Scott Benner 19:24
you even trust me? I'm getting to something. But like, do you even know what his a 1c is, for example,

Carly 19:29
I do. We do share it with each other. When we have our visits, we'll come home and we'll talk about it. And I think he's in the low sixes, which I believe is the best it's ever been. So he's really proud of that. So he'll come home, come home and say, Oh, it's, you know, it's this, so, yeah. So we're kind of like, we're not in competition with each other for best ANC or anything like that, but we will celebrate the wins when they are there. Yeah,

Scott Benner 19:52
no, of course. And you the same, you'll be like, Hey, I had, like, so you just, it's almost like that end of the day conversation, like, you know, I bought. Didn't do today. I saw, like, you're almost like, hey, you know I gotta I was at the doctor's day. I got my UNC back. Like, it's, it's kind of that not focused, but still spoken about,

Carly 20:09
yeah, yeah, and, or anything, right? Like, he said to me this morning, he's like, this hasn't happened to me in years. He showed me his graph, and he was completely flat in, like, the 70s and 80s all night, last night, and I was like, hell yeah, that's awesome, you know? Like, that's something to be celebrated too, because that doesn't always happen. Yes,

Scott Benner 20:26
like, the weirdest thing to high five somebody over but there you go. Absolutely,

Carly 20:29
we bond a lot over diabetes. It dominates a lot of our conversations. What about

Scott Benner 20:34
the tough parts of it? Like, when you are struggling, or he was struggling with lows? Like, do you find yourself going to him and saying, I need a second set of eyes on this. And then do you do that together, the two of you, and are you guys involved in your daughter's care together, or is it specific to one of you? So

Carly 20:53
for our daughter, it's it's definitely both of us. I have the more perfectionist personality, so I'm going to be the one more looking at detailed things and trying to find trends and trying to brainstorm other ways that we could have a better blood sugar day, or something like that. But he's certainly involved too. I don't sleep through the night. Even if there's no beeping, I'll still wake up eventually through the night. If she's high. If our daughter's high, I'll go correct her, and I'm not going to wake him up to go do that, you know, like, we don't share. If I notice that, I'll take care of it. Yeah. And then as far as for each other, really, just the really, he was having those bad lows for a while, and so I was kind of taking more notice to him and trying to help him out more. For me with the pregnancy, it was more battling the highs. And now I've got that back down where I'm comfortable. So I would say he probably doesn't have any part in mind there

Scott Benner 21:49
the middle of the night and BBB, and you wake up and he's not low, but drifting low, right? Like he's 80. And you look at his graph, you're like, Oh, he's going to be 70 soon. Would you pick up his they don't call it a PDM anymore. Would you pick up his controller and, like, do a Temp Basal off for a half an hour, or something like that, without telling him?

Carly 22:08
I would not, because I don't know how to work the pump, so I don't want to screw anything up. So I would wake him up and say, Hey, I got you. I don't know what needs to be done. Can you do something here? Yeah,

Scott Benner 22:17
you wouldn't have trouble going I look, I woke up. I saw your graph. Man, it looks like you're going to be low. Like, here, get ahead of it.

Carly 22:23
Yeah. Oh, yeah. All right. That happens a lot, especially because, like I said, he sleeps through a lot of the alarms. I have had two times, three times, maybe in the past year and a half, where I was unable to wake him up because of a low or just because he was sleeping. Yeah, and, and I was trying to figure out how to turn off his basal, and I and then I thought, maybe I should rip his pump off, because I want to make sure it's not getting more insulin. So in those two instances that happened overnight, you know, you're racking your brain like, Okay, do I use the Gucci and do I call 911, do I try to treat him myself? So what I've done two times is I've gotten glucose, I guess, crushed up glucose tablets in his cheek, yeah, and kind of rubbed it in and and then gotten

Scott Benner 23:10
Carly. They make a gel, if you want to get it. And

Carly 23:13
I think we, I think we do have that on the line, and think about that, but we have, like, yeah, it's like, in a, like, a little aluminum packet or something. We do have some kind of gel, because we got it for our daughter for school, in case she had a severe low at school, right? But at the time, you know, it's like, two in the morning. That's, that's what I it's weird where

Scott Benner 23:29
your brain goes. Sometimes it really, yeah,

Carly 23:33
and I'm like, and, you know, you think practically too, like, Well, okay, two kids sleeping in the house. Like, what am I? You know, what are my options here? So I felt comfortable enough to try to treat him myself first. And after I, like, loaded his cheek up with the powder, I test his blood sugar, and I think it was like in the 40s or something like that, or in the like, maybe upper 30s. So I knew I probably had some time to treat it. And then he got to the point both times where he was able to then follow commands, hey, chew this, drink this, and then he was able to do that. So yeah, those are, those are scary times. And then, but, but I didn't know how to operate the pump, to turn it off, or anything like that. So once he, like, came to I said, Hey, maybe you need to adjust your settings, because I wasn't sure what to do. I didn't rip it off. Didn't rip the pot off. I was going to, but didn't end up doing it, and then just kind of leave it in his hands once he's like, able to,

Scott Benner 24:26
right? Also, maybe we should do it. Do a training at lunch sometime where you explain to me how to work this thing a little

Carly 24:32
bit. I wouldn't mind it. I think, I think that's probably important. Yeah, boys, you know

Scott Benner 24:36
what I mean, Carly and once your husband is incapacitated, like that, you have to help him. Does it change? Like, how you see him like, you know what I mean, like that. I know this is going to sound strange to some people, but like that masculine feeling you have about him, like, does it lessen, like when you see his humanity and like his like, how easily he could you. Just slipped away. Do you know what I mean? Like, am I making sense? First of all, yeah,

Carly 25:03
okay, yeah. The first time or two that this has happened, I just felt really scared, and he was very grateful that I was there to help him. And it was kind of like a bonding moment. Like, you know, life is fleeting. Be, you know, make sure you say you love each other before you go to bed. All, all that like gooey crap. Right? When this was happening more and more frequently, I would just get frustrated and say, Hey, we have children. What if I'm gone and this happens to you? I actually taught my oldest how to call 911, from her phone. Just recently, we just got her a phone number, just so that we could see her numbers when she's on a Wi Fi. But previously, I mean, this is like, brand new, like, as in, like, 10 days ago we did this, yeah, so previously, she could only make emergency calls, so I showed her how to do that if daddy doesn't wake up. Call 911, this is how you do it if I'm not here, or, you know, run to the next door neighbor's house or whatever, you know. So, I mean, it was frustrating, because I was scared to leave him alone with the kids, like, if I had something for work where I was out of town, right? And I'm like, again too. If you've had this for 35 years, like this should, why is this happening now? I don't remember these things ever happening to him before, and we've been together now for 14 years. So, so yeah, maybe you

Scott Benner 26:18
should switch that thing over into auto and let it help him stop his lows.

Carly 26:21
You know, we talked about that too, and there, I think there is a reason behind these extreme lows. We actually just recently found out, in the last couple weeks, he has a lot of symptoms of what we think is primary adrenal insufficiency. Oh,

Scott Benner 26:36
wow, look at you figuring things out. Excellent for you. Yeah,

Carly 26:39
so he he was in the hospital twice in the last 18 months with low sodium and, like low blood pressure and and just looking back, all the symptoms make sense now, these extreme lows he's been having, where he is completely blacked out, catatonic. It's all part of this. So he's actually, he was is endocrinologist this morning to get more information, but he started on a steroid over the weekend, and he's already feeling better. And then I and, you know, I feel kind of terrible. I'm like, well, shoot, we didn't know that either.

Scott Benner 27:09
When I was telling you to pull your shoe together, I didn't know about that. Sorry, exactly.

Carly 27:13
I'm like, now I feel like an a hole.

Scott Benner 27:15
Listen, you know, that's a good catch. How did you guys figure that out?

Carly 27:19
So, interestingly enough, he had just like, been feeling so crappy for a few weeks. And finally, I said, Hey, you know what? I think you need to go in get some blood work done. Something's not right. The morning after his blood work, his doctor called him about six in the morning from home and said, Hey, you got to go to the ER, your sodium is 116 I think it was. He's like, you gotta go. It's, this is an emergency. So he went and I had my endocrinologist visit up to like, you know, just like a follow up in pregnancy that morning. So I had to bring the kids with me. So I apologize that. Hey, I'm sorry to bring the kids, but my husband's in the hospital. She's like, Oh, what's going on? So I explained a little bit, and she's like, are they testing him for primary adrenal insufficiency. And I say, I'm like, I don't know. Do you think I should tell them to text

Scott Benner 28:04
them they will be hold on a second. Yeah.

Carly 28:09
And lo and behold. I mean, just kind of funny. She's never met him before, never treated him. Three symptoms I described, and that's the first thing she thought of. And sure enough, that's, we don't have the official diagnosis. But, I mean, that's, that's where it looks like a tiny and like cortisol is nearly zero. ACTH, I think is the other one is sky high. So it's, it sounds like, that's what it is. And so now he has his second autoimmune disease, yay.

Scott Benner 28:36
Trust me, there'll be more. Don't say that Hardin's nurse practitioner. Her very first nurse practitioner figured out that Kelly had hypothyroidism, really? Yeah, by I was just talking to her one day, and she said she's the first time her name was Sakina. Was that her name? No, I'll figure out her name, because she deserves credit. A large portion of what I do on the podcast is because of her, because she said that day something that had never been said to me before. Did you know that people with type one diabetes often have you'll find other autoimmune issues throughout their families. And I was like, Oh, I didn't know that. And then I said, my wife, blah, blah, blah. And she goes, Yeah, you should probably look into like, a thyroid issue for your wife, like she's the first person who, like, said that to me out loud, wow,

Carly 29:22
yeah, interesting. Like, a third party that's, like, not involved at all, is like, hey, what about this? And it's spot on. She

Scott Benner 29:27
was just, like, sharing information with me, and yeah, and I put some things together, asked another question, she made a statement. And then, you know, as people with thyroid know, sometimes it's hard to get doctors to help them. It took us, like, seven years for a doctor to give my wife medication, but, but, yeah, that that was the problem. So, Jesus, yeah, it's really something. And I'm also not. I'm not picking on your husband, by the way, but you know, in general, listen, I was a stay at home dad for I became a stay at home father when Kelly was in her third trimester with Cole. Yeah. Least 24 now, and I have, I mean, you know, I started this podcast 10 years ago, and my kids would tell you, I'm not much of a stay at home dad anymore. You know, they're also older, so, you know, they can cook for themselves, but I was a stay at home dad my entire adult life. Basically, I was doing it before it was a thing. I was doing it, you know, you didn't know another guy that was doing it. Like, I was early to the party, and I did it for a very long time. My wife still looks at me like, I don't know what I'm doing with the kids. She'll still be like, What are you doing here? And I'm like, you know, you like before COVID And they like, you know, sent everybody home to work. You were never involved in anything like I raised these children. I mean, not that you weren't here, but, I mean, let's be honest, Carly between you and me, right? Like, that is me pretty much for like, 90% of it, and she still looks at me like, what's dummy gonna mess up? It really struck me when you were like, you know, hey, if I leave the kids with you and you can't wake up, like, what are we doing here? You know, like, because you already did, you wouldn't have trusted him if he didn't have diabetes, is what I was gonna say. But does it work in reverse? But going back to my initial question, have you ever been so low that he's needed to help you, and do you think that that's changed your relationship at all? I

Carly 31:17
had one instance about a year ago where I did the age old mistake, where I gave my my basal dose, but I did it at the fast acting insulin before bed. And he did go and get me orange juice from the gas station. And he made sure that, you know, I was good. And I think I had to eat like two, like maybe 175 carbs or something to make up the difference? Yeah? So I just did it slowly. I took lots of notes, like I never was not in control. That makes sense. Like I'm watching the graph. I'm pricking my finger every, like, half an hour. I'm eating slowly because I didn't want to, like, totally blast my body with all these carbs, so I didn't think I'd actually need that many. Yeah, so anyway, but he was there with me, like he made sure I was okay.

Scott Benner 32:02
How did you know to handle that so well? Because people freak out a lot of times when they do that. You

Carly 32:07
know, honestly, I, and I'm not great at math, but I'm like, You know what? I think if I just treat this like a math problem, like if I accidentally did 175 carbs worth of insulin I should eat, you know, plan to eat about 175 carbs over the next four hours. I know that the insulin is going to wear off in about four hours, completely two out, you know, peaks in an hour, like starts going downhill after that, after four hours, I'm good to go. So, yeah, just kind of approaching it from a logical standpoint. Try not to freak out. However, we did that. Do that once with my daughter too, and I can tell you, I was not as calm because she was sleeping and little Yeah, I think at the time, she was probably on like, oh my gosh, a unit and a half of basal, which is probably like 60 carbs for her, so it wasn't as hard to make up her Yeah, difference. But I remember too. I was doing intermittent fasting at the time, and I'm like, damn it, I'm breaking my perfect fast, you know, like I had a great day. My blood sugars were so good and and I'm like, I totally, you know, I totally bet on this, and now I have to totally blow it and eat like, all this sugar and crap.

Scott Benner 33:17
But, well, I think that experience can be I've had this thought frequently, but I think that experience, I know it starts as a mistake, but if it's handled the way you handled it, I think it levels up your understanding of diabetes. Because, like, you would never sit down for 175 cart meal, because you'd say, oh gosh, that's a lot of insulin. I don't know how it's gonna work. Like, you know you would not that you I'm not saying that a meal should be 175 carbs, but I mean, like, you know what I mean, you would never do that on purpose, but the minute it happened by mistake, you were like, Well, all I really did here was Bolus for a meal of 175 carbs. So what's the difference between a 40 carb meal and 100 carb meal? You thought about it backwards, which is the thing that I try to ask people to do sometimes, and like in the Pro Tip series, stuff like, don't just think about, how does the insulin impact the carbs. Wonder about how the carbs impacts the insulin, so that you can kind of think of it more holistically, which is what you did. That's really what's well done. So my brother lives in Wisconsin, probably pretty close to where you live. Okay? And I visited the food there is, I had trouble eating at a restaurant when I was there, really, for all the like, fried options. Like, not a lot of not fried options. Like, is that your finding or was I just in the wrong places? I mean,

Carly 34:39
there's definitely a lot of fried options, definitely a lot of cheese. But I mean, I think with the whole healthy eating trend, the gluten free, the allergy friendly, there's a ton of those kind of places popping up. And I think too, just a lot of options on, like typical menus, where they've got where you can have a lettuce wrap instead. Out of, you know, a bun or whatever. So we, we don't eat out a ton, just because it's, like absolute, like hell on the blood sugar, especially for our daughter, no matter what she eats, that's out. I mean, I don't know what they put in food, but, like, it, did you go to Culvers when you were here? Or have you been to a Culvers? I know they're not just in Wisconsin anymore. I don't think I was No, that's one of her favorite places. And, and, yeah, it's about 100 carb meal for her, which is, we never, I mean, this is, like, treats, right? We never do this kind of stuff, but we know if she's eating Culvers, she's got to eat it by like, 5:30pm because we're going to be up for at least eight hours babysitting her blood sugar, because she will have like, three or four waves of high, like high is coming from the French fries or the fattiness and the cheeseburger, the fattiness and the custard. So, yeah, we don't eat out of time because of that, but, but I will say that was one of I've probably listened to that podcast at least three times about the Fed delayed fat rise. I don't remember what it's called, but like surfing those fat waves and protein like over several hours and trying to understand how the body metabolizes that differently than carbohydrates. That is one that I have listened to multiple times.

Scott Benner 36:11
Yeah, I a lot of people say that actually, and it's, it's great information for people, mostly because doctors won't. They don't bring that up ever. It's, count the carbs, put in the insulin. That's it. Wait three hours if you're still high, okay, you could Bolus again. You know, it's pretty much the end of it. The

Carly 36:25
first time I learned about this was on the Facebook support page, yeah, I never knew you had to Bolus differently for for fat.

Scott Benner 36:32
Yeah, no, I know. I don't think anybody knows so. But hey, why tell anybody? Right? I

Carly 36:37
know it's only your life and your health. No big deal. No reason to bring it

Scott Benner 36:41
up, so you don't eat like that very frequently. I don't know I was I found myself out. I had a very like, basic thought. When I was out, I was saying, I don't understand how everybody here doesn't have type two diabetes. Like, this food is rough. And just like you said, cheese and and grease and like, I'm like, my god, this is this got to be hard on people. And I did find myself thinking, I don't, I don't know how I could take Arden to a restaurant here. I wasn't, she wasn't with me, but it would have been like, well, I guess, just like you described, actually. And not that it's specific to one place, but it's always stuck in my head. Because when I first met my sister in law, she was like, Oh, I brought like, a treat that, you know, it's a thing my mom and I make at Christmas time. And it was, you know, the pretend popcorn you can buy in the grocery store. They're almost like packing peanuts, you know what I mean? Oh, sure, right. And she brought them soaked in caramel sugar. Oh, wow. And she was like, Yeah, we make these at Christmas. And I was like, to murder each other with I was like, what? Like, what is this exactly? But it was just like, as I was talking to her about it, and I don't think she'd be embarrassed, like it was just the was just the family tradition. And I was like, I was like, Oh my gosh, that's crazy. And I it made me wonder, like, what other things exist in other places? And then people come on, like, very frequently, people like, um, like, Mexican heritage, come on. And they talk about how they eat, and they're like, I have diabetes, and everything I eat is hard and, you know, but this is what we eat, like. It's usually how it goes after that. So anyway, okay, so what makes you want to come on, like you feel like this is a pretty like, rare thing being one married to one parent of one,

Carly 38:19
yeah, I think when, when I think about our story, and I always have to specify, I got type one in pregnancy, not gestational diabetes, right? Like, there's always, like, I always have to make sure people understand that. And so I think I thought it was kind of rare. I've never met anybody in our situation, so yeah, and just kind of, I'm sure this comes up a lot. I've seen it posted before where people are worried about having another type one child when they already have one, and maybe holding off from having more children. And I will tell you, after our first was diagnosed, we already had our second, so no going back there. But when we were debating on a third, we always wanted a third, but it took, I mean, it almost a year. I think, of like soul searching, praying, talking to doctors, talking to family friends. What would you do? Would you have another child knowing that this child, or, you know, the one we already had, was going to get diabetes too There came a time where I'm like, It's too cruel. I can't bring another child into this world knowing that they might have this lifelong sentence, right? And then, I think honestly, through a lot of prayer and a lot of thinking about it, and I'm like, you know, whether or not it's diabetes, it could be anything else, it could be cerebral palsy, it could be cancer, it could be any number of things, any number of birth defects. I mean, there's so much out there. Is it really worth not having, not completing our family like we think on a chance that we could have another diabetic or two in the family? We ultimately decided, you know, it's not like it's it's not worth not. I think we would always regret not having another child. Okay? Yeah, so that's a big thing too. I want, I think it's important for people who are on the fence too to think about it that way. You know, if it's not this, it could be this, or it could be that.

Scott Benner 40:09
Listen, I've heard people work it through from both perspectives, and I've understood every decision that people have come to. You know, I get it when people say, I just don't want to take the risk. And I get it when people say, Well, I have diabetes and I'm okay, and they'll be okay too. I understand. I really do. I understand every perspective on it. So, yeah,

Carly 40:33
I think it's important not to be discouraged if that, if having another child is something you really, really want you. And I think too, right? You have to take responsibility, just like financial responsibility, before you have a child, make sure you know what you're doing. You're controlling it the best you can. You're going to give your future child the best start in life and set them off the best way you can, whether it's anything, right? I mean, it's not just limited to, like, a medical, a medical thing, it's anything financial responsibility or just being a kind person or whatever, like you, it's your job to mold this person, and if you're taking that commitment to do that, then

Scott Benner 41:13
yeah, hey, listen, Carly, it's like everything else in life. If it turns out great, you'll look like a genius. And if it doesn't turn out well, well, then you screwed up. So yeah,

Carly 41:21
talk to me in 10 years, and we'll see how many more diabetes we have, hopefully zero. Yeah, exactly.

Scott Benner 41:25
Well, no, like, we're ready 25 years from now, when your middle kid is like, I don't know, like, you know, doing so incredibly well, you'll be like, see, we did the right thing. And you know, somebody else's kids gonna be shooting heroin with their insulin needles, and they're gonna be like, Oh, I knew we shouldn't have another kid? Oh man, yeah, you can't. I mean, it's gonna, life is gonna be what it's gonna be. And right you get in front of it, and you you do what you did, you think about things and make informed decisions. And then along the way, there's gonna be twists and turns, and you're gonna have to keep thinking and keep making more decisions, and just hopefully, you bump and nudge your life well enough that it ends up in a place that you look at and go, Well, that one, okay, yeah, absolutely. That's pretty much it. As far as I'm concerned. I don't think you can control things. I don't think you can stop bad things from happening anymore, that you can make good things happen. So right, just do the best you can, best decision on the day, and then just keep paying attention and hope it ends up somewhere. You said you talked earlier about, uh, crying in your car, which seemed to be a theme for you at some point. And I thought to tell you, even though it was completely disconnected from this, I'll share it with you here. I cried in my car last night. Oh, no, don't be sorry. It was, it was, I got, I ran out for something, and I started thinking about, like, my son's situation, and how he's just probably not going to be around much anymore, you know, because just of his age and where he is in life and everything. And, man, it just like, it made me upset, you know. And I was like, Oh, I just found myself thinking, I just need a little more time. You know what I mean? Like, like, here in this space, like, how do I stay here a little longer without adversely impacting his life? Like, I want him to move forward and grow and all that stuff. I wanted that for everybody, you know, but I'd like to stay here just a little longer. And then that made me, somehow my I think it was really tired. I think that's important to point out. You shouldn't think about things like this when you're tired. And then I thought, like, Oh, perfect time. If he was six and Arden was one, she wouldn't have diabetes. Like, I'd like to sit in the living room for a couple of days like that, just, just everybody just sit there, you know? And and I made myself all upset anyway. I was embarrassed for myself, and I was by myself.

Carly 43:43
Anyway, I feel like as a parent, you have those. You have those times where you're just like, Man, where did the time go? I will tell you though I have not once taken for granted handing my four year old snack and not having to think about weighing it how much medicine she needs to eat it whenever it's just her, and I can just hand her something, oh, man, it is, like the best feeling in the world.

Scott Benner 44:07
Arden had to, um, change a device last night. And Arden got sick like, a week or so ago, you know, like, constantly, like her, her throat was crazy. It looked like, like, tonsillitis, strep throat, like, something like that. And we went to she went to the doctor, and the doctor's like, Oh, God, that's horrible. She's like, Yeah, great. But with test, test not strep throat. It's not this, it's not mono, it's nothing. It's just the viral thing, like, it'll end. And they just sent her home to suffer, basically, yeah, and she slept on a chair in the living room for three days. She wouldn't even get up and go to bed at night and just wrecked, you know, like, really wrecked. Her blood sugars were bouncing and, like, everything was a mess. And she suffered, I think, Monday, Tuesday, Wednesday, but last Friday, we had to, and, I mean, had to go to Georgia to get her stuff out of her apartment. Mm. She's not going back to school there. We only had the the room for a certain day. And I'm like, we needed two cars to accomplish it's a 700 mile drive one way, and it had to be two cars. Like, it's not a thing I could do on my own. And I was like, What are we what are we gonna do? You know? And she just stood up on Thursday, and she's like, All right, we're going tomorrow. And I was like, I don't think you should. She goes, What's, what are the other options? And I was like, I don't know. So she drove with, you know, by herself in a car. I drove by myself in a car. We went 700 miles. We drove like, I think, we drove eight hours the first day. We slept a few hours. Got up, drove, you know, the other seven hours, or whatever, got there, had dinner, went to sleep, woke up at five in the morning, packed our cars up and drove straight home. It was like, 14 hours home, yes, and in the last hours of the trip I'm talking about from like Baltimore to home, it was in the middle of that torrential rainstorm that happened. So, like, there were times where we were just like, we didn't even know where we were driving. Like, I'm not lying. We got to a rest stop at one point, like we just had to take a break in the middle of it. And Arden goes, I was following you. I did not know where I was on the road. And, yeah, it was, like, really bad, right? Anyway, yesterday we go to our endo appointment because we're, like, stuffing in our endo appointment before she goes back to college, so we can make sure we have, like, everything we need. And the endo looks at her and goes, and this is where you guys are. Most of you are not going to be lucky, because Arden's endo is a concierge doctor. We pay her cash, we turn it into our insurance. Later you get, like, an hour long, you know, visit with her, and she also helps Arden with her thyroid. And, you know, she's a good she's a really good doctor. And she looks at Arden, she goes, Honey, what's wrong? And Arden's like, I have, like, you know, because she can barely talk. And the woman's like, Oh my God, let me see. And she looks in her throat, and she goes, there's plaque back there on your on your tonsil, and, you know, you have strap. And Arden goes, they told me I didn't have strep. And the woman's like, you know. And she's like, gave her a prescription for, you know, an antibiotic and, and she's like, you know, do we want to, you know, do think we should get your lungs X ray? I hear kind of like a hollow spot in your lung, but I'm you're getting air all the way down, but, like, just really good medical care, you know what? I mean, it's awesome, yeah. And then we do everything blah, blah, blah for the the endo appointment that all goes well. Also, I'll tell you one other thing we talked about while we were there. This is going to be a long way. To be a long way to the story. Martin's taking a GLP, which she initially started taking for insulin resistance. It ended up helping with PCOS, symptoms, very specifically, really bad acne, which is completely gone now. It helps her with her periods. It really eliminates a lot of her insulin need. About 20% of her insulin need just changes everything. But she had lost weight to the point where we were like, This is not like. She lost too much weight, you know. And so we took her off it for the last month so she could regain some weight, and then we are putting her back on it, but not at the dose that comes in the injectable pen. We're limiting it by giving her less. And for people who want to know how that happens here at the house, we are injecting the pen into a clean, sterile vial and then drawing out some with an insulin needle and giving it to her that way. And just sit there and have this great conversation with a doctor who's like, Yeah, that's great. Like, I'd start, what did you start with? I said I started with, like, point 125, like, half of it. And, you know, we just talked about, you know, how we're gonna watch it, you know, we're gonna watch to see when our insulin needs change in the week. We're gonna decide that that's gonna be the next injection day, so if we can get it to go longer than seven days, whatever. Again, you're talking to like, an intelligent person who's willing to figure out a problem and not just say, well, the box says this, or, you know, like, that kind of thing. And you're sitting there, oh yeah, also hard to find, yeah, right? And you're sitting there feeling really lucky about all this, and really lucky like Arden. Am I telling you the story? Because Arden is in the best situation a person with type one diabetes could be, right? But last night sitting there sick before the antibiotic had kicked in or anything. She had to change a device. And I watched her face. She was like, uh, like, not now, you know what I mean? Like, I don't feel good. I haven't felt well for a week and a half. I just did this trip back and forth. I'm exhausted. I'm tired, like, I can't believe I've got to change this device right now. It's the simplest thing, and still, it only took a couple of minutes. But you made me think of that whole story when you said it's not lost on me that I can hand a snack to my other kid and not think about it. Yeah, you said that. It made me think of this entire week, and people are never going to know the impacts of type one, even when you have it worked out and you're doing really well, it's still impactful, significantly, I think,

Carly 49:46
absolutely, once you throw a wrench like the sickness or, you know, even the road trip on its own without being ill, the stress of that, any of that, I mean, it's, it's amazing how much your well oiled machine is just. Just seems to go, can go haywire a little bit, and then it just seems like the worst thing in the world to even think about, like changing your device or doing anything that that's management. I just want

Scott Benner 50:10
people to know that so they can have some grace for their kids, or, you know, spouses or whoever, when they're like, you know, when you say things like, oh, they didn't want to, they don't Bolus for their meals. Like, people say it like, oh, you know, I have a problem like, it they don't Bolus, so they won't Pre Bolus. And it all, it all sounds so simple. And, I mean, listen, it is. It's like, you know, it's not, not simple just to Pre Bolus until you take all this other stuff into account. And like you just said, like, after 10 hours in the car with like, three or four more to go, when we drove into this terrible rainstorm, like we were bolusing just for the adrenaline, or driving in the rain for hours. I was like, you know, I'm like, texting, or I'm like, the next time you we slow down, or something like, put a couple more units in. And then as soon as, by the way, as soon as we got done with that drive, as soon as we got to our house, her blood sugar started falling like crazy, as soon as the adrenaline was gone, and, you know, so we fed it and everything. But even that, like, we're home, Jesus, like, one in the morning, you know, we finally got home, we're all sitting on my bed because Kelly's like, Guardian bed. And we came in and sat down, and I was like, Arden, you're gonna get low, like, really soon. And she's like, she looked at me a little like, you know, she's getting older now. So she looked at me like, I don't need your help, buddy. I've lived on my own and, you know, and I get it. But I was like, No, seriously, we put a ton of insulin in for all that adrenaline while we were driving. The adrenaline is going on. You're I see it already. You're getting low. It's gonna happen. And she's like, Yeah, yeah. And then she ate this little pack of, like, cookies, and I'm sitting there thinking, that's not gonna do it. Like, that's that's not enough. It's not fast acting enough, and it's not enough carbs. It's just like, it was maybe, like 12 carbs, and I was just like, that's not gonna work. Do I say something? She already, like, we just went through this whole thing. We're exhausted. Like, I don't want to be telling her what to do. But she kept drifting down, drifting down. And I was like, Arden, this is it. I'm like, You need something fast acting. And she said to me, I live by myself with this. I know what to do. But it wasn't anger, it was she was exhausted, and it came out very matter of factly, and I recognized it as you might know this, and people listening might know this, but like, if you get low, you turn, you get you can get that. Um, oh, I guess I'm gonna die like that. Like, you know what I mean? Like it your concern for yourself can go away. Does that make sense? Have you ever you seen that? Yeah, and I recognized that on her face, like she wasn't complaining to me as her dad, who's bugging her, she was drifting into that. Like, whoa. I guess it's okay if I go like, and I was like, so I just stopped talking to her. I got up. I got um, things to fix the low blood sugar with. I grabbed her stuff, and I was like, we're gonna test your blood sugar. You're drinking this, and you're gonna have all that. And she was just like, Okay. Like, she she got into that. Like, okay, thing. And no kidding, like her, CGM said 60, but the finger stick was 44 and I knew I could tell just by that little change in her personality, like that, it was happening, but I've seen it before, so I know what it looks like. And we stopped the low right there. It was not a big deal, and we leveled it off. And that was all good, but then all I could think of was her words from earlier. I live alone. I know what to do, and I kept thinking, except in the one situation where you didn't, and then it's something I'm gonna worry about the rest of my life. You know what? I mean? Yeah,

Carly 53:32
yeah. That sounds a lot like my husband, too, where he's just like, he's like, Yeah, I treated it. I'm good. Like, okay, well, you're still not can tell something's wrong, like you're not all there, sit down. And a lot of times I have to be like, sit down. Drink this, because he's just like, I'm fine. I'm good. Now the end, on the other hand, the spicy six year old, she gets like, angry and like, thrashy and yells a lot when she's low. That's how we know she's having a bad low, because she gets crazy, like, huge, she throws a huge tantrum, and she just has no control over her body. It's just so interesting how it's different. It's so different for different people she we always know, like, if she starts throwing a fit, we're like, alright, let's check your blood sugar. And typically, yeah, I mean, she's having a really bad low, and then, and then trying to, trying to tell someone like that to do something, you know, that's like, the last thing they want to do. So you gotta try to make it, make it like it's their idea, you know, play the little toddler reverse psychology game, or a little kid reverse psychology game, they get older, it

Scott Benner 54:35
stops working, though, yeah,

Carly 54:37
yeah. I feel like it's already, like, not working as well as it used to on her.

Scott Benner 54:41
But so do you, I mean, with the advent of tea sealed with like stuff like that, do you think, Oh, I'm gonna test my other kids, and if I see this coming, maybe I'll try one of these infusions to hold off type one. Have you ever considered that I have? I.

Carly 54:59
I just always figured, because I think it's for, like, age eight, I think is the youngest, or something like that. So for me, it always just seems so far off. If she has not developed type one, or she's early enough in the disease by that age, I would certainly consider it especially because that's four years off from now. So, I mean, it will have been out there for that much longer, more studies, more you know, people have been on it to see the like efficiency of it. So I would consider it

Scott Benner 55:28
is something you would think about if it came up. Yeah, okay, yeah, let's see. T cell does approve. You're right, in individuals ages eight and older, who are in stage two of type one diabetes, which is characterized by presence of two or more auto antibodies and abnormal glucose tolerances, but without overt symptoms of diabetes. Okay, yeah. I mean stuff like, that's coming. And here, that's obviously a drug that exists. And, you know, they they say, can it? Can hold off the type one for hopefully a year or more. And I think they hope it's longer. But I think right now it's FDA approved to say, you know, whatever time they say. I mean, not that I didn't really appreciate your, your thought process on having more kids, but when the rubber hits the road, you're going to be like, uh, what do we do? And how do we how do we get ahead of this? So I figured you had thought about it already,

Carly 56:17
yeah, yeah, certainly. And, I mean, I didn't know how long it would put off, type one. I mean, a year seems like nothing. You know, like, I'm like, Well, I don't know. I hear you. I don't know. It's a tough choice. Yeah, it's a tough choice. Are there other things

Scott Benner 56:30
that you want to talk about that we haven't thought of?

Carly 56:32
I don't think so. I i have a, I guess I have a couple stories about, like, my daughter's head, she's had one hypo seizure. My husband had one hypo seizure a few months ago. I don't know if you want any info on I think you're

Scott Benner 56:46
in the right place to tell that story. So go ahead. Sure.

Carly 56:50
Okay, so my my six year old, she had a history of actually, febrile seizures from high fever and so she has, unfortunately had two of those. The first time it happened, we had no idea what was going on, so we test her blood sugar. Of course, thinking it was a Hypo seizure, it was not so that had happened on two occasions. And one morning before school, she had, this is when she was in 4k so she was four, I dosed her for her breakfast. She wanted a smoothie, so I made her smoothie, and her phone says she was maybe, like 60 or something like that, so the smoothie was almost ready. I gave it to her to to drink, and she starts, like, pushing it away, you know, getting that kind of thrashy attitude that I was describing earlier, and, you know, just really defiant and and not listening. And this is one of the first times we actually saw this behavior. So we did not know yet that this was indicative of a low especially because the phone wasn't even beeping yet. We test our blood sugar. Oh, I can't remember what it was, but it was definitely not like 60. Like the phone said she was more. She was in the 40s, I think so. The first thing I did, I'm like, Okay, well, I see it, there's fruit snacks right here. Eat these fruit snacks. I figured she would be willing to eat those more than, like, glucose tablets. Now, looking back, of course, glucose tablets are faster. I should have done that. However, I was just trying to piece right here to eat something. Get something in her body, Yeah, unfortunately, it was too late. She get got that far off look in her eye like she has gotten from her febrile seizures, and I knew she was gonna have a seizure, so the first thing I did was I picked her up and I, like, put her in the bathtub, and I had, I told my husband to go get the glucagon, and then I had to swipe out all the fruit snacks out of her mouth, because I didn't want her to choke, because she had started eating them, but she hadn't swallowed them all. So I'm trying to remember when, like a little baby is is choking, how you're going to be really careful about swiping out, you know, the food out of their mouth. So I'm trying to get the food snacks out of her mouth. I'm on the phone with 911, go get the glucagon. I administer that to her, get her out of the tub and just kind of like, layer on her side and just hold her till they got there. And luckily, we have the fire department's very, very close to her house, so they were there in less than five minutes. And yeah, and it was scary. It was unlike the febrile seizures, I would say, just because I know she's going to come out of the febrile seizure. Like it's never easy to see a seizure, at least with those you know, she's coming out, and it's not a health emergency, it's not a medical emergency. Whereas in this one, I'm like, pleading with the paramedics, and, you know, they don't know. They're just, I'm like, is she gonna wake when is she gonna wake up? When am I gonna know she's okay? And they're like, We don't know. You know, we're gonna have to take her to the hospital for, you know, observation. And so of course, that's what they did. They and she was, she was getting she was really sick. She was vomiting everywhere. They get her in the ambulance, and they have to cut one of her favorite dresses off of her so that they could give her an IV. We go to our local children's hospital, which is probably about 25 minutes away, but it's the best place for her to be. So that's, that's always the. The best place to go. And, yeah, it probably took at least three, four hours for her to completely come out of it. And I had to call the school. Yep, Deanna is not gonna be at school today. She had a Hypo seizure. And they're like, Oh my God. I'm like, I know, but yeah. Then after that, she was okay. And I would say she's probably been close the lowest reading I've had on her since was ello on the meter, which I think is below 20, and that's only happened once, and that was swimming on vacation. So that's always one that's so hard to okay every half hour, let's get out of the pool make sure that your blood sugar is okay. Yeah. So, yeah, that was that was really scary. And I had never seen my husband have a seizure before, and he had had them as a kid a couple times, but never in his adult life. And I got home, I took my youngest to lunch. My oldest was in school. I took my longest to lunch one day, came home and my husband was in his trunk and it was running, so I figured he was probably going to go run an errand or something, but the garage door was shut and he was he was still in there. So I was not in the not in the garage. He was outside, but the garage door was closed, like he would have closed it and probably left right away. So I thought it was weird. He was in his car, just sitting there. So I go outside and his hands are, like, clasped together so tightly I can't, like, unclasp them. He's like, shivering, like shaking. He's sweating, like drenched in sweat. I can't talk to him. I can't get a response out of him. So I figured he was having a seizure. I couldn't find his phone to see what his blood sugar was, so I went and grabbed a meter, picked his finger. I think he was in the 40s, which he's been lower, but I think we looked back on it, he had been low for an hour and a half, probably in the 50s and 40s. And again, I'm like, Okay, do I again? I got my four year old here. She was three at the time. I'm like, do I do I call an ambulance? Do I try to, like I've done in the past overnight, where I've gotten the glucose in his mouth? Do I try to do that. And I figured, okay, I don't know how long he's been like this. I think I just need to get emergency help here. So I call 911, I grab the glucagon, and we have the vaccine me. So for for my daughter and for him, we use the vaccine me so that actually like the needle. So I get it up, I get it up in his nose. I'm on the phone with an ambulance goes on their way and and then, of course, they're because he's an adult and he's behind the wheel of the car. They're like, well, we have to investigate this. As you know, he's unconscious behind the wheel of a car. Like, had he been drinking it? Does he have a history of drug use? I'm like, No. I'm like, Dude, look at his meter. I just checked it. He's like, 42 this is a low blood sugar situation. I can guarantee you, that's what's going on. But they had to look through his car. They found the vaccine. And they're like, what's this? I'm like, Dude, it's

Scott Benner 1:02:51
crack. What do you want from me? Jesus,

Carly 1:02:56
yeah. I'm like, this is the emergency, man. I'm like, why don't you talk to your EMS. That's here. They'll tell you what it is, because you're probably not going to believe me if you already think he's like a crack addict behind the middle of a car. So anyway, once we got that all cleared up and he was he actually came to in the ambulance before they left the house, but they still took him to the hospital. And he told me, he's like, he's like, I remember going down, we have a pretty steep driveway. He's like, I remember going down the drive. Down the driveway and asking, am I dying? Like, am I dying? Am I? Where am I? Am I gonna die? Because he had no idea what had happened

Scott Benner 1:03:32
as he was coming out of it, going towards the ambulance, he had that thought, yeah,

Carly 1:03:35
yes, yes. And then a couple things,

Scott Benner 1:03:38
did you ever figure out what led to it? So I think,

Carly 1:03:41
as I think is pretty common, especially if you have more than one person wearing a CGM that beeps, there's the alarm fatigue. You hear it, you're like, Okay, I'll take care of it in a second. He was, it was during the work day, so he was working. I think he had a meeting because he was supposed to come to lunch with us. And then he said, Hey, I got a meeting. I can't I can't come. So I think he was probably in his work meeting and didn't want to leave that to go treat. Of course, looking back, could have prevented things, but, you know, I mean, it's, you're like, I'm fine, I'll be good for a few more minutes. And then a few minutes turns into a few more minutes. And like I said on the CGM, it looked like, maybe, like 45 minutes to an hour, and 15 minutes he was low for, yeah, how long he was out of it? I have no idea. Because we were gone, we were out to lunch,

Scott Benner 1:04:27
you also don't know how low he really was, even though, you know, you're wearing stuff, it could have been lower his blood and and it's possible his liver, you know, dump some glucagon and help bring him back up again. He could have been much lower than that at some point. So I know he's not on here to talk to, but man, I think he'd like the automated features in an algorithm. They do such a good job of keeping you from getting low.

Carly 1:04:48
I agree. And it took him, I think he's only been on the pod for maybe four years. Maybe because he was, he has this around. Rational fear that it's just gonna dump, like all the insulin that's in it in his body. So it took him a long time to even go on a pump. So I think he'll get there. He'll trust it enough he'll get there. He just needs to have that little bit more of control right now, just for now, but, but again, too, this was in February, so looking back, I mean, this could have been his, like, secondary auto immune, you know, oh, sure, adrenal insufficiency could have been a a factor in this. Because, like I said, he never, he's never had episodes like this. These are new within the last two years, so it's very likely that maybe this new onset is causing it? Yeah, if you

Scott Benner 1:05:42
have questions about that, there are people in the Facebook group who have that as well. I think you'll get a lot of thoughtful answers if you post about it in there. I,

Carly 1:05:49
you know, I actually did a few days ago. And yes, I did get, oh, and I forgot her name, I think it's Sarah. Yeah, she was very, very helpful and helped, you know, told me some of the tests that I should have him request. And his endocrinology point was originally scheduled for two and a half weeks from now, and that was my post. I said, Hey, this is what just happened. These are his numbers. He's also type one. He's having this terrible lows this two and a half weeks. I mean, is this like a death sentence in the next two and a half weeks? Like, how urgent? How much do I have to push on this? And she was like, you absolutely need to push on this. And we did. And he got in today, which was like five days later. So yeah, she was very encouraging. And I know there's a couple podcasts that she dropped for me that talk about the type one and Addison's together, so I haven't listened those yet, but I gave the numbers to my husband too, so he could look them up. And, yeah, we'll definitely be listening to those together to learn more about how the two go together and just get some more information.

Scott Benner 1:06:48
I hope they help. And I appreciate you doing this. This was really terrific. You were fantastic. Thank you. I appreciate it. Thank

Carly 1:06:53
you for having me. I you know, I'm like, if it helps somebody great. If not, hopefully, at least it was interesting.

Scott Benner 1:06:59
Oh, interesting. It was a lot of fun. I don't know why I think this is fun. Somebody said to me the other day, like, what do you do? So it's a weird you're on I was on vacation, and people were like, what do you do for a living? And I'm like, I have a podcast. And it's the same thing every time. Like, younger people are like, right on. That's those are my goals, baby. You know what I mean? But older people look at you, like, wait, you pay a bill with that. Like, you don't even like, it's very it's very interesting. Like, the response you get back, and I started talking about it, and like, how much I like it helps people, and like how much I enjoy making it and everything. And I think they were just looking at me like, you enjoy making a podcast about type one diabetes? And I was like, No, it's like, it's about people, and they tell their stories, and you get diabetes information inside of the stories. And I know they just stared through me, but no lie, their younger kid that was with them looked at me like I was a baseball player. They're like, That guy makes a living making a podcast like and they realize the generational difference, like older people look at me like I live in my mom's basement. You know what? I mean? It's really interesting, but I really enjoy I love so I told them, I was like, Look, pays my bills. That's great. I love doing it. Like, obviously, I'm super chatty. This is perfect for me. And I'm like, and it helps people. Like, it sincerely helps a lot of people. I say it's just perfect. Like, I don't think I could do anything that I would enjoy more. You know, just to think that, like, this thing happened to your husband, and that we actually have episodes that he could listen to to help understand that. Like, if you would have asked me 10 years ago, do you think one day you'll have content for people to help them, if they have Addison's, I'd be like, what is that? You know, but like, just kind of all learning together. And, yeah, you did that for somebody today, so I really appreciate

Carly 1:08:39
it. I hope so. And, and, yeah, I've learned countless more things from the Facebook group and the podcast than in any medical setting, so I appreciate it too. I mean, it's I'm happy to provide information, but I'm also more than willing to learn, so I've learned a lot. Well, appreciate that too. It's

Scott Benner 1:08:56
my pleasure. It really is. We're definitely still calling this gas station orange juice, though you got totally fine, whatever you want to do, I trust you. The weirdest thing you were like, you know, you went to the gas station and got me orange juice. And I was like, oh, okay,

Carly 1:09:10
people are gonna be listening. They're like, what does this have to do with gas station? Orange juice? Nothing

Scott Benner 1:09:14
to do with that. That's a part of the joy I had. A woman told me the other day she goes, Listen. It's not that I don't enjoy your titles that don't mean anything. She's like, but she goes, but could you write more in the description? And I said, No, it just doesn't make sense to me. Like, if I explain the episode in a description, first of all, most people aren't going to look at it, and the ones who look at it might go, oh, well, I don't need any of that. And then they'll skip it, and then they'll end up missing something that's really, like, really could have been valuable for them. So it's a little on purpose. I just want you to have to listen. So part of the mystique, right? Yeah, I mean, listen, what am I gonna do? Also, it's not like anyone's famous, like, you know, other podcasts get away with just being like, you know, they just put the name. Of the person in the in the title, and you go, Oh, okay, you know Steven Spielberg is on today. I know that. And then you can go, Listen, but I can't say, you know, I'm not saying your last name, but I can't be like, Carly's on today, because people are going to be like, I don't know who that is, so, all right, nobody cares about her, yeah, but when you turn on gas station orange juice, it takes you a while to figure out what's going on. By then, hopefully you're hooked and you're listening to the episode anyway, that's how I do it. All right. Thank you so much. Hold on one second for me. Okay, okay.

The conversation you just enjoyed was sponsored by Omnipod five. You want to get an Omnipod five? You can? You want to make me happy? Do it with my link, omnipod.com/juice, box. Are you tired of getting a rash from your CGM adhesive give the ever sense 365 a try, ever since cgm.com/juice box, beautiful silicone that they use. It changes every day, keeps it fresh. Not only that, you only have to change the sensor once a year. So I mean, that's better Earlier you heard me talking about blue circle health, the free virtual type one diabetes care, education and support program for adults. And I know it sounds too good to be true, but I swear it's real. Thanks to funding from a big T 1d philanthropy group, blue circle health doesn't bill your insurance or charge you a cent. In other words, it's free. They can help you with things like carb counting, insurance navigation, diabetes technology, insulin adjustments, peer support, Prescription Assistance and much more. So if you're tired of waiting nine months to get in with your endo or your educator, you can get an appointment with their team within one to two weeks, this program is showing what T 1d, care can and should look like. Blue circle health is currently available in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. If you live in one of those states, go to bluecircle health.org to sign up today. The link is in the show notes, and please help me to spread the word blue circle health had to buy an ad because people don't believe that it's free, but it is. They're trying to give you free care if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. It's ready to go right now. And like I said, they're adding states so quickly in 2025 that you want to follow them on social media at Blue circle health, and you can also keep checking blue circle health.org to see when your free care is available to you. I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. Are you starting to see patterns but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 Hey, what's up everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.

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Scott Benner 2/9/25 Scott Benner 2/9/25

#1428 Small Sips: Tug Of War

Meal bolusing simplified (I'm not kidding)

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to the sips series.

These foundational strategies were nominated by listeners. They told me, these are the ideas in the podcast that truly made a difference for them. So I distilled them down into short, actionable insights. There's not going to be any fluff or complex jargon, just practical, real world diabetes management that you can start applying today. And I know your time is valuable, so we're keeping these short. Another small sip will come out once a week for the foreseeable future. If you like what you hear, check out the Pro Tip series or the bold beginning series for more. Those series are available in the menu at Juicebox podcast.com and you can find complete lists of all of the series in the featured tab on the private Facebook group. Please remember that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. The questions you have, I guarantee you there's answers to them in the Juicebox Podcast, and it's all free. You

Oh, it's time, Jennifer, it's time in our little series to talk about the tug of war. Oh, oh, that's fun, okay, but we got to keep it short, because it's small. Yes,

Jennifer Smith, CDE 1:42
the tug of war and, well, this is just, it's easy. Yeah, you think so? Well, I think I hate the word easy in diabetes, because I think when you're starting out, it doesn't seem easy. And then as you move further along with things, easy is a word for some pieces of it, but other parts of it change, and it isn't quite easy until you figure it out. So anyway, tug of war,

Scott Benner 2:04
I always tell people, diabetes is never going to be easy, but one day you might be so good at it, it could fool you into feeling like it's easy. So this has come up in episode 156, 214, and 1220, but, and I know we're trying to do this quickly, I'll do it as fast as I can. I was once on a phone call helping a young mother of a small child with the kids diabetes. And I realized that the mom was not in any meaningful way pre bolusing meals, and I tried to explain it to her, and then she asked why, and then I tried to explain to her why, and I thought I had done a pretty good job. And she said, I'm sorry, I don't understand, Bill, don't get it, yeah. And I was left with a moment of, like, this person, like, I'm, first of all, I'm not a doctor. Like, somebody put me on the phone with this girl, you know, but she was, like, 2021, years old, and she had already had, like, a three year old baby. The baby had type one, and I just felt like, I can't, like, if I hang this phone up and don't find a way to help her, it's gonna be horrible for her. It's gonna be horrible for the kids. Like, I felt very responsible, sure. So I just reached down into my wherever and started talking, and I said, Have you ever, like, been in a tug of war like at school? And she was like, Yes. And I go, okay, so, like, instead of there being people on both sides, and I'm freestyling this whole thing, I'm like, instead of there being people on both sides of the of the of the rope, why don't you imagine on one side is insulin, and on the other side is carbs, or anything else that tries to make your blood sugar go up. And she goes, okay. And I said, now there's that flag in the middle of the rope, right? And at school, you're trying to get the flag on your side to win. And she said, Yes. I said, Well, this game is different. We want the flag to stay in the center. And she's like, okay, so I'm like, just, you know, I don't know what I'm saying.

Jennifer Smith, CDE 3:54
Well, you're trying to find the right way, the simple way to explain that will make sense given you had tried a couple of different ways of explaining how insulin and food work against or with each other, right?

Scott Benner 4:08
I was just, as they say, grabbing at straws. And I had, I launched on this idea, and so I just stuck with it. And so I'm making it up as I go. And I said to her, I'm like, so here's the problem. I said, if we just blow the whistle and everyone starts pulling, the insulin starts pulling one way, and the food starts pulling the other way. The problem with insulin is it's not really super powerful at first, right? Like, it's not at its full power when you inject it, but that food, you know, like you eat, and you see maybe 510, minutes later, you start seeing your CGM go up, right? And she goes, Yeah, I said, so the food's going to end up pulling before the insulin. So if we blow the whistle and everybody starts pulling as hard as they can, the food's going to overwhelm the insulin and win. And then, instead of thinking about this, like east to west, like, you know, pulling the rope, kind of flip it so that the insulin is. Pulling down, and that the food's pulling up, right? And she goes, okay. And I said, so if you let the food pull first, you're going to get higher and higher and higher, and then suddenly, who knows how long into it, this insulin kind of comes online for real at full power, and it just starts pulling. But the problem is, you Bolus for the number and the carbs. Say your blood sugar was 90 when you ballished, and you know it was two units for whatever you ate. Those two units were meant to have a fight at a 90 blood sugar with carbs that were not overwhelming them, that didn't have momentum, that weren't already winning, I said. But the problem is, when you don't pre bullish your meals, the food is not just winning, but it's creating a higher number. The higher number needs more insulin. You suddenly don't have that amount of insulin. The food has momentum, meaning that numbers flying up, and now you're trying to stop it with amount of insulin that was really only meant to keep a 90 blood sugar stable during this eating excursion, right? And then I went through the rest of it about how to, like, you know, put the insulin in first, let it get working, so that that rope is moving in, you know, we have momentum going towards the insulin, not enough to make a low but just enough so that when the food starts pulling, that flag comes back to center. And then you've got the food at full power. You've got the insulin at pull power, they're both pulling as hard as they can, but neither of them can make that flag go left or right and flip that in your head north and south, and imagine that flag rolling along that 90 number for two hours. That's a straight line on your CGM. That's when you see people who like Bolus and have a straight line in their CGM, that's what's happening. And she just goes, Oh, I understand that was like the end of it. I was like, Okay, great. So it works so well for her that I said it in the podcast, and then I said it again. And then one day, and I mean this sincerely, Jenny might not remember this, but one day, Jenny complimented me about it, and it was like one of my nicer moments around diabetes. Oh, you remember that? By any chance? I

Jennifer Smith, CDE 7:07
think so. Yes, you think so. You don't remember. We talk about so many things. I know quite sure that I did, because it is, it's really easy. It's an easy way to understand, because if you were the person who is very interested in looking at all the documentation of every device and every medication, and you pull out the little insert that is inside of your vial of insulin package, you will see a graph of how insulin is supposed to act, how it's supposed to work, what its timing of action is. Nobody, nobody reads that. I don't read it. I think in my 36 plus years of having diabetes, I've maybe opened that little packet two or three times, just out of like, I don't know, curiosity at the moment, whatever. But majority of people are not going to read that. They're not going to put it together with the reason that they take insulin, which is primarily for food coverage, right? And you do? You have to understand it in a way that that marries the two and gets them to work in unison. It is. It's a great description of keeping that flag once the insulin is working where it's supposed to in a timeline, in its action profile of creation, you're getting a stable flag in the middle, which is holding your blood sugar in a good place.

Scott Benner 8:31
If that flag is a stable blood sugar at 90, then the insulin can pull as much as it wants, and the food can try as hard as it wants. You know, if you want to think, I think of the food as pulling the number up, and the insulin is trying to pull the number down, and the balance of the timing and amount of that insulin against the food done correctly, just doesn't allow either side to win their stated goal of making the number higher or making the number lower. But you and I'm going to sound weird saying it myself, but you said to me one day, you said, this is the best explanation of Pre Bolus thing I've ever heard. I really was touched by that. So thank you. Oh, you're welcome. And yes, as you can tell now, I can tell the tug of war thing with my eyes closed, because I've done it a couple of times, but I appreciate very much you doing this with me today. Thank you, of course. Yes, thank you.

Are you starting to see patterns, but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list at. In the private Facebook group, just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025

thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend. You.

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