#649 Quadoimmune

Christina has four autoimmune diseases.

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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 to episode 649 of the Juicebox Podcast.

Today you'll hear me talk with Christina. Christina has diabetes, Addison's disease, gastroparesis and fibromyalgia. She is one autoimmune disease away from our basketball team, as they would say. Please remember while you're listening, 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 healthcare plan, or becoming bold with insulin. I went away last week with my family and I've rested haven't spoken in this microphone for about nine days. And my voice is feeling very strong. I feel very deep. I have a lot of timber. This will go away this week, as I do five interviews in the next four days. Probably rag myself right back to where my voice is cracking and everything while I'm trying to do the openings for these podcasts. But that's not your problem. It's mine. Let's get to the show, shall we? Oh, you know what I haven't said in a while. Well, in my life, I haven't said in a while but your life I probably just said it yesterday. Now I ran out of music Hold on a second.

If you have type one diabetes, and are a US resident, or you're a US resident, who is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the T one D exchange registry, complete their survey. And just a few minutes later, you will have helped people with type one diabetes. That's it when you fill out the survey. It actually helps people and the podcast benefits. So it's like a two for one deal. You're doing something nice for people. And me, too. I mean, do you one day exchange.org forward slash juice box? Get over there right now. Do your business. I mean, if you listen to Christina, you know, I'm saying listen, right now I've confused myself. Listen to the podcast and go fill out the exchange. Oh, you know what else and then support the sponsors? Click on their links, buy their products, let them know you came from me. This show is sponsored today by the glucagon that my daughter carries. G voc hypo pen. Find out more at G voc glucagon.com. Forward slash juicebox.

Christina 2:35
My name is Christina. I have been a type one diabetic for 15 years. Although I was misdiagnosed for almost 10 years is type two. And I am ready to share my story.

Scott Benner 2:50
I have to tell you that being misdiagnosed for a decade is a long time and I've heard a lot of people misdiagnosed with type two.

Christina 2:58
Yeah, yeah. I found out it's not an unusual story at all. I am technically Lada which has a lot more people are misdiagnosed with type two initially that have a lot of so. But yeah, I was on insulin and the first year had DKA a couple times. I mean, all of the signs were there that this was not a type two. But you know, doctors get it in their head. That what you look like and

Scott Benner 3:28
yeah, yeah, I type to care. I mean, type twos don't go into decay, right?

Christina 3:35
That it's rare. And I even had a doctor that said, Well, this is kind of unusual, but I'm still confident you're type two. And I just was going really I just I didn't know enough. I wasn't really taught anything, initially from diagnosis either. And I just didn't know the right questions to ask. I didn't know to push it. I just thought, Okay, I'm a little bit different than but yeah, I just, I had other friends that were type two. And nothing I was going through ever seem to match what they were going through. But I really and then I actually had a doctor once looked at me and said, well, it doesn't really matter what type you are the treatments the same. Is it No. And I just kind of like, and I believed him. So I really didn't know any better than listen to what I was being told. And honestly, it really just took years for me to finally go something's not right here in to learn what to go in and ask for. So I just finally went in and I said I want to antibody test in a C peptide. And even the doctor was like, I don't think that that's necessary. And I went no, I want it. And I just would not stop saying that until she finally went okay. We'll order it. And then I still remember her calling me up and she had the most cheapest voice where she went. You're right you're not type two.

Scott Benner 4:55
What What led you to believe that that was the case that you were typed that you were a type one.

Christina 5:02
So honestly, that change happened for me, one of the families that I was babysitting for regularly, their son was diagnosed with type one. And that kind of was a game changer as I went through that diagnosis process with them. And finally started learning a lot more about type one in the differences through experiencing that with them. And that finally led me to start Googling more myself and trying to learn more about the differences. And that's when I first read about Lata and I went, Oh, that seems to fit me a whole lot more than type two. And so that really was the start of the change for me was just learning how to treat his type one, and realizing there was a lot more similar similarities to his diabetes than I had ever met with any type two.

Scott Benner 5:53
What so tell me a little bit about lotta because I, I freely admit that I don't know that I could describe it properly, What's your understanding?

Christina 6:04
So, essentially, first of all, it's a latent autoimmune diabetes in adults. So I did test positive for two of the antibodies, although not for Dad, which was kind of interesting. But two of the other ones, I tested positive for the antibodies, and then I've had a very slow loss of my insulin production. So whereas most type ones, usually within the first year, lose all of their insulin production. Mine was really slow. So I honeymooned actually, for close to 11 to 12 years. And I do actually credit some of that to being on insulin pretty early. So as I was on insulin, in that first year, that helped protect my pancreas and didn't have to work so hard. And that.

Scott Benner 7:02
Christina, you're gone. So you blanked out for a second, your pancreas didn't have to work so hard.

Christina 7:10
My pancreas didn't have to work quite so hard. And that helps protects the beta cells that you have left from being stressed. So you can prolong your your honeymoon by using really long with LADA by using it by and by using insulin. And I did actually have it in chronologist, early on, that put me on a 730 split insulin. And that worked really well for years for me. And he still at the time, though, was thinking I was type two. So he wasn't perfect. But he did find the right combination of insulin to kind of help take the stress off of my pancreas because I was still producing some of my own at that time. And yeah, so

Scott Benner 7:59
the question about that. So you're you're living for 10 years with a misdiagnosis. Looking back now, because that you know, you've lived five years with a diagnosis. Looking back now, what were the personal harms to you? Like, of the mistake?

Christina 8:15
Yeah. So when I was diagnosed as type two initially. And honestly, that was just an assumption that was kind of accidentally discovered in the ER, although I had been sick for months, and the doctors hadn't been able to figure out what's going on. I mean, I had a lot of the classic signs of diabetes. And they just never thought to do a finger prick. So I just happened and they came in and they're like, are you diabetic? And I went, well, not that I know. But something's not been right for a while. And they're like, well, your blood sugar's like 350. And I, that was like a fasting blood sugar because I hadn't been keeping food down. So that was interesting. But so I met, I mean, they just sent me home from the ER and they just said, Well, you need to follow up with your doctor, because you might be diabetic. And then the doctor just said, the typical put me on Metformin gave me a meter to test a couple times a day. Well, that first three months, I did everything exactly what I was told to do. I changed my diet. I took my meds I checked my blood sugar. And I went in for my three month checkup. And my a one C really had not moved all that much. I still was getting to hundreds and three hundreds regularly on my meter. And the doctor just said, Well, you're not doing good enough. You need to do better. And to me, that was basically motivation killer. I went, oh my goodness, I have been killing myself to get these numbers under control. Now I was only testing like two or three times a day. So because that's all I was told to test. So I didn't realize that I hadn't really even gotten that much better. But essentially at that point, I gave up. It just went Why am I killing myself to get this better? To have very little improvement? And I? Yeah, I basically went, Okay, well, I've already tried my hardest, and I didn't do any better. So I give up. Why am I doing working so hard? If it's not going to get me any better to my gold and my, my doctors just gonna still tell me I'm not doing well enough,

Scott Benner 10:22
though there was no real difference between the effort and then on effort. Right, right. Right,

Christina 10:26
exactly. I think my agency came down like one point, it came from, like 12 to 11, or something like that. I mean, it was very little improvement. So honestly, I am an all or nothing kind of person. And I put all my heart into it for no real improvement. So I went back and pretended I wasn't a diabetic anymore. I did still take the Metformin. But I went back to my old diet, I just really was like, Okay, if there's no difference, then why am I working so hard? And that lasted for about three or four years where I just, that's where I ended up going into DK a couple of times, because I really wasn't trying and even once I put on, but was put on insulin. I was only half heartedly taking it. I wasn't being consistent. I wasn't. I wasn't even often testing before I took insulin. I mean, I just was, well kind of take it to say that I kind of tried, but, and then. Yeah, it just really was a mood killer for me. So I really was like, why am I trying so hard. And I would go through periods of time where I'd kind of try again a little bit. And nothing just really seemed to work. I was not getting my agency anywhere near where I supposed to. And I had the doctors that were using the scare tactics of you need to do this. So you're going to kill your kidneys, you're going to lose a foot foot, and I just went. But I've tried doing everything you said. And it didn't work. So I guess this is just my life.

Scott Benner 11:56
Can I ask you when you first of all, how old are you at this point?

Christina 12:01
I am not 42. You are now you're 42. So I was 27.

Scott Benner 12:05
So you're in your late 20s ish. And so when you tell them, Look, I'm trying as hard as I can. And they're saying do better. They don't offer any change in change and no tactics, or it's just no, you're not trying hard enough. So do you think their assumption was that you weren't even doing the things they told you to do?

Christina 12:25
Oh, yeah, I had a doctor that looked right at me. And I said, I am trying. He's like, I don't believe you. And I went, Okay, well. Yeah. So I mean, I would, I would kind of go through like a month or two, where I really would kind of resolve, okay, I'm going to try again. And again, I would not see really any effort, and I still would go in and get yelled at again. And so it really the second time I was in DKA, I did have a doctor that finally really got my attention. He looked at me and he said, If you don't change what you're doing, you are going to be in kidney kidney failure are dead in a year. He's like, you cannot keep having blood sugar's this high. And he's like, You came really close again this time. And he was the first one that looked at me. And he said, I know how hard this is. I know how impossible this feels. But you have got to find a way to get this under control, or you are not going to survive this.

Scott Benner 13:25
Did that doctor offer any ideas? No,

Christina 13:28
no, no concrete advice. But

Scott Benner 13:32
he was really worried while he wasn't helping you.

Christina 13:35
Yeah, so I finally decided I couldn't change. I couldn't do this all or nothing. So I made it my goal every month, I was gonna reduce one bad habit. So for me, the first thing was no more soda. No more sugary drinks. No, but like, I just was like, okay, I can do one thing. I can do one thing. And so I just got into the mindset. That's also about the time that I did get the endocrinologist that finally got me on the 7030 split insulin that seemed to work a lot better than within what we had been trying. And I just thought, Okay, I'm going to tackle one bad habit at a time rather than just trying to totally change everything at once. And that works a lot better for me. Once I got one bad habit out of the way, then I could work on another one and with his endocrinologist help, and getting on the right combination of insulin, I finally started to get better. I mean, I still never had an a one seed under maybe seven and a half. But I at least got out of the double digit a onesies for the first time. And when I got down to about 7.5, I usually was an upper sevens during that point. I thought, okay, they're not yelling at me anymore. They're not telling me. I'm a diabetic and so Yeah, but it became more of a change one habit at a time because trying to change everything at once. Really, I just couldn't sustain it. It was overwhelming. I just

Scott Benner 15:12
what are some of the other things that you that you change besides the soda?

Christina 15:17
I did that and then I tackled, okay. Really be consistent on my insulin. Take it when I'm supposed to test my blood sugar when I'm supposed to do other than I kind of know how I feel. I really find that got support for getting enough strips to test as often as I should be testing, which for me, I although they still had me on the test before you eat and test two hours after kind of standard test, when you get up in the morning, test before you go to bed at night. I got an A, they really wanted me on a more regimented eating schedule where you eat at these times, and you take this much insulin, which I still wasn't taught carb counting, I still wasn't taught some of the things that I really should have still been doing but and I was taught to do corrections. So I wasn't letting myself if I was too high after a meal. Although it was a little bit difficult in the 7030 split, I and then I kind of learned my meals, okay, this is how much insulin I need for this meal. So I wasn't necessarily taught carb counting, but sometimes some meals I knew would hit me a little harder. And I would take a little bit of extra even that was a little bit more than I was told this was to take it that meal so and a lot of it was really getting the diet under control. I definitely had a sugar addiction going into this diabetes and was not eating a very healthy diet. So it was more of switching out high carb foods for lower carb foods. And I wasn't striving for perfection anymore either. Like I got into the mindset of I can't stand the thought of never drinking soda again. So I'll drink one once a year. And then I'm like, I will have one day a year will eventually one soda because for me the thought of never having it again, was unthinkable. So I started doing that with other foods to other favorites. Right? Yo, okay, I'm not going to tell myself, I'm never going to eat this again. But I'm going to save it for you know, birthdays or celebrations. You know, holidays. And that worked. I could I could not eat it. Knowing that I would have a time coming up again a few months where I would get to enjoy it again.

Scott Benner 17:36
Can I ask you? Maybe this is not related, but what part of the part of the country do you live in?

Christina 17:45
I've lived in a lot of places. So did you grow up? I grew up in Southern California. Interesting. Okay. So that's not where I am now. And that's not where I was when I was diagnosed. But yeah, so

Scott Benner 18:00
I just asked because I mean, I think so does one of those things that is just universally understood. Right? Like, we all know, that's not good for you. And yeah, and yeah, I wondered where you grew up that that it was, you know, such a big part. Oh, I

Christina 18:19
didn't I didn't grow up on it. That was definitely an adult breaking free. Get to do what I want.

Scott Benner 18:27
Okay, no,

Christina 18:29
I, I Yeah. I mean, it was something that was a special treat as a kid and I loved it. And I always want to drink a bit. It just honestly, for me as an adult, it was my source of caffeine. I wasn't a big coffee drinker. And it really was what I use to sustain my energy during the day. And honestly, I, I didn't gain weight. I didn't I mean, there really didn't seem to be any immediate consequence to it. I knew it wasn't the greatest for me, but there was no immediate consequences at the time. So I yeah, I kind of used it thinking, Well, if it ever starts to cause problem, then I'll stop. kind of mindset.

Scott Benner 19:13
So are you think you were addicted to the caffeine or the sugar?

Christina 19:17
Oh, yeah, it was. It? Definitely. I mean, I definitely. I actually had a job at the time. I was working about 60 hours a week and most of my food is coming from the drive thru or the freezer because I just, yeah, working long hours and I and I was working as a nanny with young kids and anyone knows that's exhausting. So the last thing you come home and want to do is make them make healthy food. So I mean, I just I was living on fast food and freezer meals and stuff that was not good for being a diabetic. So it was it was a major life change for me to get diagnosed. But again, that first three months I knocked myself out I went I I, I really put my heart into changing my diet. I switched to diet soda, which, in itself, and I just ended up giving it up because that didn't end up being the greatest either. But yeah, I mean, I just I really I, I got my I was actually making meals, making an effort trying to make things from scratch, at least trying healthier alternatives. And then I got my agency back and they're like, you're not doing enough. Like, I don't know how I could do any better. Like,

Scott Benner 20:37
what? What's my question here? So how long does that go on for like, like, how many years? Are you in a double digit a one see

Christina 20:46
that I was actually trying to go back and calculate that was about my first four years. Okay. Wow. And then that's when I had kind of the dka again, where the doctor really got my attention and said, Hey, you can't keep living like this. You're gonna kill your kidneys, you're gonna kill your health. You're you. I can't guarantee you're going to survive the next day. Okay. And I just went, okay. You're, I mean, that was the first time where it really scared me how close I really when I went into that. I felt like I was dying that time.

Scott Benner 21:19
But you, but you're still been treated as a type two, and you believe you have type two diabetes?

Christina 21:24
Oh, yeah. Oh, yeah. Oh, yeah. They, they keep telling me? Oh, no, you're type two. And I just went, Okay, it must be really different from the other type twos. I know. And so yeah, and honestly, what

Scott Benner 21:38
do you what do you do next time when it when it ramps up? When you have that, that next DK? And you're like, Okay, I'm gonna try harder, whatever that means, like, what does that end up? Meaning like, is it

Christina 21:49
again, changing my diet, getting my eating habits and my really terrible eating habits under control, taking my insulin, consistently, testing my blood sugar when they, you know, when they've told me that I'm supposed to be testing? And, yeah, just really the two big things, were getting my diet under control and taking my insulin consistently. Even when I didn't feel like it even when I didn't want to tell myself No, this was what I need to take it. Honestly, I had never been one that like needles before. And the thought of having to deal with needles every day for the rest of my life was something also really just emotionally hard for me to deal with because I didn't like it. And I kept getting told, I kept getting told you get used to it, you'll get used to it, which on the one hand is kind of true. But on the other hand, I didn't like it any better. I think it didn't help me start liking,

Scott Benner 22:48
waiting for someone to come on here and how much they like needles. It hasn't happened so far.

Christina 22:53
Yeah, so I just, I just went, Okay, this is what I have to do. And I have to accept that this is just going to be part of my life now. And I can't keep telling myself, I don't feel like doing this.

Scott Benner 23:06
So so let me fill this in here. So latent autoimmune diabetes in adults are a lotta is a disorder in which despite the presence of isolette antibodies at diagnosis of diabetes, the progression of autoimmune B cell failure is slow. Yeah, so here it says, it could be at least the first six months, but it sounds like you were getting help for a while, like long.

Christina 23:32
Yeah, because I wasn't being a good diabetic, they put me on insulin pretty quickly. Because the oral medications alone weren't helping. Now again, then for that first four years, I was not consistently taking the insulin. But I've actually no other people that have lasted as long as I did, by and it seems like early Insulin is the key to support your pancreas because it's trying to make more and more and more insulin to address the high blood sugars. And that just puts a lot of stress. So by supporting my own pancreas, insulin production that seemed to be able to preserve my beta cells, a really long time I've heard I've actually heard two to 10 years is the average for people with LADA for how long the honeymoon.

Scott Benner 24:27
It's sad, though. When you talk about it, when you say I know you're tongue in cheek, I can hear it when you're like, you know, because I wasn't a good diabetic. They gave me insulin. But yeah, but the real sentence there should be because I was misdiagnosed as the type. Right. Right. And I didn't. And they figured it out. Right. They gave me

Christina 24:46
the right that would have been the better, better you had

Scott Benner 24:49
there happen eventually for the wrong reasons.

Christina 24:52
Exactly. Exactly. So they were just trying to get my blood sugar's down and it wasn't working. Just the orals so they thought well then like we guess we need to give you some insulin. So yeah, I mean I'm I'm pretty much completely insulin dependent at this point and just have a very different life now then

Scott Benner 25:15
we'll do they do they treat you now? Like do you have a your proper diagnosis now are you a type one are you lotta

Christina 25:25
so on paper, there is no diagnosis for Lada. So I'm on paper now type one. So that was almost five years ago. And what that eventually meant for me though, was, once my diagnosis was changed on paper from type one to type two, I suddenly qualified for an insulin pump. And then I qualified for a CGM. So I was able to get tools that I didn't have access to as a type two, that suddenly was no problem once they were able to change the diagnosis on from type one that opened a whole new world. And then that caused me to go get involved in the type one community and suddenly meet people that was like, Oh, my goodness, your diabetes is exactly like mine. So that just also, and then there was a lot of guilt that I couldn't, with diet and exercise, get off the insulin, that suddenly was gone, that I really felt guilty. Still, as a type two being on insulin, I felt like that still was a failure somehow. Because even once I got my diet under control, and everything, I tried, actually a few times to wean off the insulin, and I couldn't. And that made me feel like and I mean, I actually was able, at one point to lose a bunch of weight. And I tried to get off the insulin, and I couldn't. And that made me feel like there I was doing something wrong. Because why can't I? I mean, I was still being told, Oh, yeah, if you get this under control, you should be able to, you know, get off your insulin. And when I couldn't do it, I kept feeling like, there was something I was doing wrong. So there was a big emotional shift, also getting correctly diagnosed as type one, right? That went, Okay, this is, this is not my fault.

Scott Benner 27:16
But no one. No one Christina, no one ever said to you, if you do this, by using these tools, or taking the steps, it was just like if you would just do this better or differently, but with no context of what that meant. There was never context.

Christina 27:36
No. And actually, I had an inner chronologist. Were right about the time where I decided I was going to push for the type one diagnosis, my agency started going up just for no random reason. And I had my a one C go from like a 7.5 to an 8.9 and a three month period of time. Now it just did happen to be over the Thanksgiving Christmas time. But I was still being a very discipline eater. But I asked my endocrinologist I said, so my Wednesday is going up, what should we do? And he's like, Well, you probably ate more sweets over the holiday than you thought you did. And I said, No, I didn't. I still I said I had maybe on the actual thanksgiving on the actual Christmas. Yes, I had some treats. But I said, I my regular diet, the rest of the, you know, rest of the normal days. And he went, Well, you still must be eating more than you thought you did. And I went, listen, he didn't he didn't increase my insulin. He they just said you probably ate more than you thought he did.

Scott Benner 28:39
He should have to do a podcast because you can ask leading questions like that you're not supposed to say I assume this is what you think sometimes I do it too. But I mean, but not the health situation in the health situation

Christina 28:50
that I went. And that was my final straw where I went, Okay, something's not right here. Because I did not Well, I really think it's just my insulin, my own insulin production went down. And we needed to have my insulin again. So but he just he has literally looked at that increase of a winsy and told me Well, you must have been eating more sweets over the holidays than you thought you did. And I just went, that was my final straw where I went, something's not right here because I know I didn't do that. And my agency what for no apparent reason. So start

Scott Benner 29:25
to figure stuff out for yourself then. Right? So

Christina 29:27
that's when I went okay, I really don't think I'm type two anymore. And I learned Okay, what do I have to ask for? So I actually never went back to the endocrinologist again. I call it my insurance and what who else can I go to? Because that was the most ridiculous answer I have ever heard. To explain you what my agency without for no apparent reason. So

Scott Benner 29:45
you must have done this. I didn't write well, you must have but I did. Yeah. I will stop talking about it now. That's exactly

Christina 29:52
exactly so I went to a brand new endocrinologist and I walked in and I went I went to see peptide antibody panel and again she also looked at me With Oh, I'm pretty confident you're type two

Scott Benner 30:04
for five seconds. Yeah,

Christina 30:06
exactly, exactly. She looked over my records. I got 10 for my other Endo. And she went no, no, I'm pretty confident you're type two and honestly, yes. Have I always been a little overweight? Yes. But I just went, I just kept saying it over and over and over again until she went, okay. We'll order it. I don't think we need to. But while we're at

Scott Benner 30:28
it, she comes back to you and says, Oh, yeah, you have type one. Exactly. Or whatever.

Christina 30:33
Yeah, she's like your, your your see peptides really low. And yeah. Your antibodies are positive.

Scott Benner 30:40
So did that. Did that? Start with Hey, Christina, I want to apologize. You were no,

Christina 30:44
nope, nope. No apology. She just went. She just went, hey, you know, some interesting results.

Scott Benner 30:52
You seem to understand with the internet and everything and and oh, by the way, all your personal experiences for the last, you know, decade. Yeah. That that nobody's been listening to you about any sense of relief? Or did you feel like you

Christina 31:08
Oh, I so hard. I so badly wanted to say I told you. So. I really had to refrain myself from saying I told you so to

Scott Benner 31:19
her to call the other doctors to write

Christina 31:23
I actually wanted to go back to every doctor that I had ever seen. told me your life to go, Oh, my goodness, look at this if you had just. And when I researched how to find out what type you are and realize how simple of a blood test it was. I wanted to go back to every doctor and go, Why? Why could you not just order this simple test? To find out like, I just I wanted to go back and go look how easy it was?

Scott Benner 31:51
How many of those doctors were male versus female? Did you see any difference? Like that kind of like, you know how sometimes you're seen first kind of undervalue women sometimes the first

Christina 32:06
endocrinologist I saw after diagnosis was a woman. And I actually really kind of liked her. But then she went on maternity leave and never came back. All of the rest were male, until this one I switched to that I really pushed for the testing. And she wasn't going to listen to me either. So I I don't know. I ended up being with her for quite a few years. She was one of those she gave me everything I asked for, but didn't ever really offer any help. So I kept going her because she gave me everything I asked for. But she didn't ever really teach me anything or give me any guidance. So But then, the insurance I was on at the time, there were very few to choose from. And honestly, she was better than the guy that told me that I must have just eight more than I thought I did. So

Scott Benner 33:00
you're making me feel like, you know how we always say that the American healthcare system, we always want to fix a problem after it happens. But we don't want to do anything to prevent it. But I don't know if it's true that we don't want to or if it's possible that most doctors don't have the first foggiest idea of how to accomplish that. You know me like the idea of getting ahead of a problem being thoughtful, instead of just it because because everything you've said, makes me feel like their job is just to go, oh, you this concrete thing is happening. And this is what we do for that concrete thing. And that's it, I get I say the thing I'm supposed to say. And whether it helps you or not doesn't matter, because I've said it and that's my job.

Christina 33:44
Yeah, yeah, I don't know that I've really felt that I can do much to change doctors at this point. But honestly, every person that I hear that's gotten diagnosed with diabetes, I tell them go in and ask for an antibody panel and a C peptide. I'm like, even if you think you're probably type two, basket escort, you know, just there's no harm and I'm running that just to make sure. And I've had a few others that I've heard of like friends of friends that were that were admitted with DK and still told the type two and I went oh my goodness, please tell your friend ask for this testing because yeah, that's really unusual. And honestly, I did have a doctor looked at me once and he went adults don't get type one. Perfect. That was his answer to me. And again at the time, I believed him because I didn't know any different. And I asked him why doesn't Why doesn't my type two, like my other friends with type two? And so I just it didn't ever sit right with me. But I didn't know enough and I didn't and I really just was taught to trust with the doctors knew what they were talking about. And so I just accepted it because I really didn't know any better back in those early years. And but the things now that I got told I just thought my goodness I couldn't I cringed that they're still telling people that so oh they definitely Yeah, exactly. I hear it's too all the time. Oh my goodness, I don't know what we can do at this point.

Scott Benner 35:12
I think sometimes it's luck of the draw. You just get a good one or you don't.

Christina 35:16
Yeah, yeah, I just So honestly, I really feel like my story is brought me to the point now that I'm able to help others avoid what I went through. So I just turn around and try to use it to help others not end up in the same situation that I was being misdiagnosed and really have them push for that. That scene to confirm it. So um, yeah,

Scott Benner 35:39
yeah, well, it's got to try to get back a little bit and right if you can keep somebody from having the same problem you had. So once you find out and you get your pump and all that stuff happening, is there an immediate transformation or does it take you some time to figure it out?

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I'm going to get back to Christina in just a moment. But first I need to tell you about a few things about the podcast here they are in no particular order. Ready. If you're looking for the diabetes Pro Tip series, they begin at Episode 210, your podcast player and they're also available at Juicebox. Podcast calm and diabetes pro tip calm. At those same links. You can find the defining diabetes series, the variable series, the how we eat series, the afterdark series, there's so many to choose from. All of the episodes of the show are available in the audio app of your choice. And at Juicebox Podcast comm you'll find links to the sponsors like Chivo Kibo penne from just a moment ago and touched by type one and the Contour Next One blood glucose meter and the Dexcom and the Omni pod. And pretty soon the endpin. And soon after, that might be something else. You never know. Go check out the website Juicebox Podcast calm. There's an entire series of episodes about algorithm based pumping. Trust me, listen now, because if you want those algorithm pumps, they're here and coming on the pods is out tandems out Medtronic, we're all going to be pumping with the algorithm one day, you should understand what that's all about. Don't you think? Don't you know, in my mind, I'm doing it Wisconsin accent coming out of my mouth. I just sound like an idiot. couple last things. The Facebook page, the private Facebook group Juicebox Podcast type one diabetes, I believe it has about 23,000 members in it. Now it's an absolutely wonderful place to learn more about using insulin, diabetes, and so much more. If you're enjoying the podcast, please share it with a friend. That really is the best way to support the show. If you're listening right now, on your phone, in a podcast app, or any kind of audio player really like Amazon music, let me think Spotify, Apple podcast anywhere. If you're listening to those apps, and you're not following or subscribed, would you please have subscribed for me, please, that'd be nice, subscribe or follow whatever your app supports. I don't know. And if you're listening online, you should get an app for your phone. It's way easier. I'm not telling you what to do. I'm just telling you, it definitely be here. Unless you like your life is specifically set up or you're listening on. Like my website. And if you are, I mean it's cool. Just saying apps are great. You should try them. Alright, let me get you back to Christina. Now there's a lot more to her story.

Christina 39:29
When I got my insulin pump, I'm very much learn everything I can about something new. So my agencies I hadn't done ever better than maybe a 7.5 when I was on injections. And once I got my pump, the highest agency that I had on my insulin pump was 6.2

Scott Benner 39:50
privato and you were injecting was that still were you doing regular an MPH

Christina 39:55
when I got the official type one diagnosis and my agency had gone up into the 80s. That was the point that we determined that 7030 Split just wasn't working goodness anymore, because my insulin production had dropped too low. So that was the point that we went ahead and switch to Basal and long acting. I had an interesting problem, though, that I have side effects pretty much to every single Basal insulin known to mankind. So that is a another reason why we were able to get my insurance to cover a pump, because I just Yeah, I actually for a while there went back to just doing long or just doing came along only and injecting pretty much every

Scott Benner 40:36
two hour like level mirror Lantis.

Christina 40:39
Yeah, tradeo bit just, well, the worst one that was weight gain, I would put on as much as five pounds a week, no change in diet, no change and exercise, the only difference was being on the Basal insulin. But I had significant problems sleeping, like it really messed with my sleep cycle and my ability to get even if I took it in the morning, I still wouldn't be able to get to sleep at night. But I had other really weird ones like hot flashes, low back pain. And I go off of it again for two weeks, and all the side effects would go away. And then we try another one. And I'd have all this, but but really that, wouldn't I switch back to Basal insulin, I gained 30 pounds. And about three months there just from trying to be on a Basal insulin. As long as I'm just on homologue I don't gain weight. But

Scott Benner 41:35
when you move to a pump, and so you're only using homologue did you lose weight, do like magically

Christina 41:41
I didn't lose weight. But my endo did say I was the first person she ever put on a pump that didn't gain weight in the first three months. She's most people suddenly have so much freedom to eat whatever they want on the pump, but they gain weight. But I really was disciplined in my eating already and really didn't see that changing moving to a pump. So she just congratulated me that I didn't gain weight on the pump. She's like, seriously, pretty much every one of my patients gains weight when they first go onto a pump, because they can suddenly eat as much as they want. And so she just thought it was impressive that I didn't gain weight. When I started on the pump

Scott Benner 42:17
during that weight gain time. Do you think do you think that you were taking in more calories than you were prior?

Christina 42:23
Nope. I was doing my same meals. Same carb amounts. Same calories. Yeah, I mean, I was doing everything exactly the same as I had been doing on the 7030 split insulin, and yet I was gaining weight every week. So I've online now met maybe three or four other people that had the exact same experience that seems to be a little rare, but and the fact it was it was with other side effects too. So yeah, I I don't know my eyes. It's my body just really does not seem to like the Basal insolence. And we did try. I mean, there was even some other lesser known ones that she tried me on and crazy. She just went she just went okay, I guess you're just weird here. So, yes, I'm like, don't touch my human log. It works. I don't have side effects on it. And I'm scared to try anything else. After my experience. I'm like, don't mess with me. He will log. It works

Scott Benner 43:23
really? Well. Can I ask you, you said in your in your note when you when you signed up to be on the show? You have Addison's disease as well.

Christina 43:33
So yeah, that's initially what we came on to talk about. So. Yeah. So in on April 18, I actually had been having side effects since July of last year. The first thing that happened? Well, I had a really bad flare up of gastroparesis in July, I actually gotten hospitalized with that. And once that kind of cleared my appetite never came back. Like I just was never hungry. And through that, I started really gaining losing weight. But my thought was, well, of course I'm losing weight. I'm not really eating. And honestly, who's gonna complain about losing weight? I mean, that was just like, Oh, great. I can take some of these extra pounds off again. And when I was working with my GI doctor, we really were just assuming I was losing weight because I wasn't really eating. Honestly, I would go the whole entire day. And unless I had some sort of reminder, I would just completely forget to eat. I had no appetite. The other thing that started is I started getting really, really bad muscle cramps at night. They just I would wake up three, four or five times a night with like charley horse bad cramps in my legs. I did eventually find like some supplements with magnesium and stuff that got them a little bit better. They never completely went away. And I talked to my doctor about it. They're like, well, we can't find anything wrong. So you're just going to have to live with them. So that was the next sign that something just wasn't quite right. But again, they're like, well, we can't find anything wrong. So you're just gonna have to live with it. I do also have fibromyalgia and they're like, Well, maybe it's just a new symptom of your fibromyalgia. And I thought, Well, okay, maybe,

Scott Benner 45:19
Christina, let's back for one second here. Yeah. You said a lot of things. Yeah. By the way, I mean this in a good way, because we're on a podcast, but you're chattier than I am. So I know. So get right. Is the is diabetes, your first diagnosis?

Christina 45:38
Yes, that was my very first years ago.

Scott Benner 45:41
When do we hear gastroparesis?

Christina 45:43
That developed kind of mid my first year, but they also told me that that was because I wasn't getting my agency under control.

Scott Benner 45:52
The bad persists to this day.

Christina 45:55
It does. Most of the time, I can go pretty long without a flare up. Stress really seems to be a flare up for me and I was having some stress at that time. I did We did also figure out there's a medication that I had started last summer that was upsetting my stomach. So that really i i if I'm if I'm control, I can usually control it with diets and keeping good blood sugar under control. I usually need a couple of triggers to go into a flare up of the gastroparesis. But yeah, there just was a perfect storm that happened that week that really flared up bad. And I could I could not keep it down at all. So I ended up having to be admitted because I was not keeping food down at all. So yeah, and then again, we got it back under control, but I just never my appetite never came back. So and then other things I look back now that I didn't necessarily attributed the time. Weird symptoms, like I started startling really easily. Which sounds like a really weird thing. But even if I knew something, someone was coming into the room, they still would startle me when they actually came in. I mean, it just fly woodland next to me and I and it was not just like a quick startle. It was like I felt like my heart stopped, took a couple minutes to recover, kind of startle reflex. And I thought that was really weird. And then the fatigue, I started just getting really, really, really tired. I always felt like I had no energy. But I just kept thinking, Okay, well, I just, I'm a kind of person that if they can't figure out, I'm just gonna keep functioning the best I can. But all of this came to a head in April. I am a regular house sitter. So I was on a house city job. It was a three week long job. And it was a little more involved than usual. It was horses and chickens and, and dogs and everything. And it was for three weeks. And I was really not feeling good during those weeks, which and I just people kept asking me, Are you sick? And I'm like, Well, I don't know, really. I'm just really tired. I'm like, but I'm not. I don't have any other symptoms of being sick. So we get to the last night of the house sitting job, and it was a Sunday. And I even made the really unusual decision not to go to church that morning because I just was like, I am so tired. Oh, the other thing that happened is I started sleeping like 12 hours a night during those last couple months, which was very unusual for me, but I just I could not ever feel rested. I just I would fall asleep at the drop of a hat. And so I got up fed the horses, chickens went back to bed and I slept till like 130 That day, which is so unusual. But I just was really really really tired. And I got up finally because I'm like I've got to get up not because I felt like I was still rested, but was just kind of like Hey, it's 130 I should get up and at least try to be a human today. And I when I ate when I hadn't ate when I got up, it was a low carb maybe like 20 carb meal. I took my insulin and I went low, which I thought was a little bit odd. But I ended up staying low like in the 50s for like two hours. I think by the time it was over, I'd gone through probably 120 130 carbs. I had a friend My friend that's on my Dexcom that just kept texting me going Why aren't you coming back up and I'm like, I don't know. I said I just it's just just been a stubborn low they happen sometimes you know, but I just kept eating and I had planned since it was the last night of my house sitting to celebrate by ordering my favorite dinner from my favorite restaurant which for me is a big treat, I've done it. I've done it at least a dozen times before knew how much my insulin was for it. So kind of, I don't know, after eating all of those carbs while I was still hungry, I still can't figure that out. Because that wasn't typical, but I already had it in my mind, I'm gonna order my favorite dinner tonight to celebrate the last night on this job and making through it. So ordered the meal. And because I'd had the persistent low, I did make the decision not to Pre-Bolus the meal, I thought, you know, because of this afternoon, I am going to just go ahead and eat and then wait to watch for my blood sugar to start going up. And then I'll go ahead and dose for this meal. But it was about an 80 carb meal, so more than I usually eat in a meal.

But around the time I started to see the blood sugar once it hit about 150 I thought okay, I'm going to go ahead and Bolus for my meal, did my normal Bolus and then I went outside to feed the animals because it was about that time that to feed the horses and everything again. So I had my phone out with me, but when out seemed normal first feeding horses when I got the chickens, I suddenly had this feeling something was not right. Like I suddenly felt like I was about to pass out. Like the symptoms of the low came on so fast. I can't even describe one second, I was fine. And the next second, I was like something is not right pulled out my phone looked at my Dexcom I think I appreciate the Dexcom still says something like 90, but it had like two double arrows down. And I went, oh my goodness, something. And my first thought was I don't have my blood glucose meter with me, I don't have any low treats with me, I have nothing. I don't have anything out with me out here. And I'm always from the house, like I'm out with the animals. And so my first thought was, I'd actually ridden my bike down. And I thought, Should I try riding my bike? Back? Should I just try to walk it back? Like my first thought is I need to, or should I just stop and call for help right from here. And as I'm quickly making decisions in my mind, my thought is I've got to get to my meter and see how low I am. Like, I need to know how bad this is. And I need to get to some sugar. So I made the very quick decision to hop on my bike ride back up to the house. I don't know how I managed to do that got up, pulled my meter out. And I was 36. Which I've actually been in the 20s a couple of times and still conscious. So my first logical thought is oh, 36 isn't that bad, I can still get ahead of this, I quickly down a couple, you know, applesauce pouches. And I'm not a gut feeling kind of person. I'm a very logical look at the data and my mind screaming at me, this isn't really that low. This isn't really that bad. But I could not overcome this gut feeling that something was really, really wrong. And I still was struggling to stay conscious. And I'm out here in the middle of nowhere by myself. And I still cannot even tell you why. But I called 911. I just went, something's not right here. Something doesn't feel right. And I just had this overwhelming gut feeling. I need help. So I quickly sent a text to my friend who's like on my Dexcom share with a screenshot of the 36 blood sugar. And I said I'm calling 911. So I don't actually remember all that much about calling 911. I don't really remember I think she quickly responded and said, how were you? I think I quickly screenshotted the address to her to where I was called 911. I remember the you know, the masking for the address. I had it, I remember the mask for my phone number. And by the time they asked for my phone number, I could not get my phone number to come out. Like I can't hear myself that I wasn't saying it right. But I kept trying and I could not get it to come out of my mouth, right? And she finally read it back from the screen. And I said yes, that's it. And then she just said, What's wrong with my blood sugar's low, something's wrong. I don't really remember much past that. I don't remember the paramedics showing up. I don't remember. I mean, I lost consciousness somewhere in there. And so I've heard the story back later, the paramedics got there in a reasonable amount of time. They started with the glucose gel in my mouth. And I think I came up a couple points and then dropped right back down to the low 30s. Apparently, at that point that was around the time that my friend showed up. And she they at first weren't gonna let her in the house. They're like family only. And then she pulled up the Dexcom on her phone and said, Look, I'm her medical person. And they're like, oh, okay, she's like, look, I've got her number right on my screen here. But she also told me later she was not going to let them not let her like she She was coming in whether they wanted to or not, but she came in and the first thing she's like, she was able to tell the paramedics No, this has never happened before, she has never had to call for help before. And they suddenly started taking it a little more seriously, at that point, when she was able to tell them that no, she has never been low like this before. I've lost consciousness. And, but apparently, they started, like, looking around the kitchen, they found a bottle of Powerade that they were able to get me to drink.

You know, and again, I came up, maybe like 510 points, and then dropped right back down again. So at that point, apparently, they tried to find in some cookies that they tried to get maybe I don't know that I cooperated very well. But again, I would come up a little bit. And then I was dropping right back down again. And I was not regaining consciousness. And at that point, they admitted to her they'd never seen anything like this before. And one of the EMTs actually admitted he had never had anyone not respond to the glucose gel in the mouth. So at that point, I guess they called the hospital kind of to say, what else do we do? Like we've never seen this before, where she's not regaining consciousness and her blood sugar was just keep dropping right back down. So they were advised to set up an IV and start dextrose. So from what I heard later, it took the third injection of dextrose. For me to finally start coming back to consciousness. Do

Scott Benner 56:30
you think this was gastroparesis?

Christina 56:33
No. I will actually explain in a moment what this ended up being so. So

Scott Benner 56:39
Christina, you're on a break or anything like that, like, I went off when I make these? You're okay, we're good. We're good. I make these podcasts. And I'll later do a transcript of it. And I think it's gonna say, yeah, you spoke for 90% of the time, because I keep I keep thinking of questions. And then you keep answering that I'm like, I, she needs me. So. Alright, it's okay. Keep going.

Christina 57:03
Um, I'll I remember when I first started coming to me, I immediately started dry heaving. And the first thing I said was, did you give me glucagon? And the guy went, No, but we have pumped you through so much sugar through you that that's probably why you're nauseous. But so they gave me some Zofran. And that kind of stopped me that from the dry heaving, but I just, I was absolutely soaked in sweat. Like, I felt like I had had a bucket of water thrown on me. I just remember feeling really kind of out of it still kind of what's going on? I didn't realize until the next day, I was unconscious for nearly an hour.

Scott Benner 57:46
Wow. Holy crap. Really?

Christina 57:48
Yes. Yes. I didn't realize. I mean, to me, it felt like maybe five minutes. But I mean, at the 45 Minute point, my friend really, she was convinced I was gonna die. She really at that point did not think they were going to bring me back because they were doing everything they do to do and I would not come back to consciousness. And she said, you know, she says, really, by the time they got to 45 minutes, she's like, and I saw on their face, how perplexed they were that they could not get you back to consciousness. So it was decided they did decide to go ahead and transport me. I was in the mindset that I'm like, I don't know, do I need to go to the hospital. I'm conscious now and my friend was assisted they need to try they need to know what happened. They you need to go get checked out to find out why you dropped so low. At the time, I was still on the Medtronic pump that's under a recall. So there was some will maybe your pump malfunction questions going around? So yeah, I went to the ER and honestly, they did all kinds of checking out they couldn't find any real alarms of anything explained this. We checked it from a pump that really didn't seem like it malfunction. The crazy thing, and I actually questioned the ER doctor this week ended up having my pump completely off for over four hours, and my blood sugar hadn't budged above 100. And I even asked the doctor, how is my Basal been off for so long? And I haven't gone up anywhere. I don't know. He's like, so anyway, long story short, they had me do a follow up with my primary care doctor. And as I relayed the story to him, the first thing he said is you were in a cortisol crash. And I went what he's like, I think you have a sense. And he started asking questions he's like that would explain the weight loss that would explain the muscle spasms you're having that would explain this blood sugar crash you had. So essentially, when you have Addison's, your adrenals no longer make the hormone cortisol. Cortisol is really important, especially to type one diabetics because without cortisol your liver doesn't break down your food for sugar and doesn't not release the sugar into your bloodstream. So, the reason I've crashed earlier at lunch I didn't crash is bad because it was only 20 carbs. Whereas this one was 80 carbs. So I took a lot more insulin for the dinner. But essentially, the process that your body needs to break down, your in release sugar into your bloodstream stops when you don't have cortisol. Now of all things they tested at the hospital, they didn't test my cortisol level, which a really good ER doctor should have tested that and saw that my cortisol was probably at zero. And should have clued them in that that was actually the issue that was happening. So until we got all the testing done, and I started on medication that next two weeks, I was only taking about 25% of my normal insulin, both Basal and mealtime, because, yeah, unfortunately, I really pushed them to admit me and get it done. And they wouldn't go for that. So they made me wait to go through all the testing as an outpatient, which took close to two weeks, which I really was frustrated with. But they're like, as long as your blood pressure is not dropping, your stable. So just try not to stress yourself. So that's its particular effect on title and also the treatment for Addison's is steroids. So if your steroid levels are right, it doesn't actually make your blood sugar go up, it just brings it back to what it normally would be without the steroids because of the because of the Addison's because it's basically just replacing the cortisol that you're no longer making. But there is no way at home to test your cortisol level. So it's basically a guessing game. Because your cortisol levels fluctuate throughout the day. And they also fluctuate based on how stressed you are and how active you are. So I tend to, in particular, be a person with the way my job is right now I have days I'm in the office that I'm really active. And I have days at home where I basically sit the whole day. So my cortisol needs are different on those days. And it's still a guessing game, to try to guess how much I need to take based on how active I am that day. So And what's really interesting is now if I have a low blood sugar, I have to stop and ask myself, Is this low blood sugar because of too much insulin? Or is this a low blood sugar? Because I don't have enough cortisol? How do you know?

There's some subtle differences in how they feel. It's a little bit of trial and error. Sometimes it's situational going, Oh, I haven't had a dose of hydrocortisone in four hours. So this is your five hours. So it's probably wearing off, I probably need a little more. I will start getting muscle cramping when my cortisol is going too low. So obviously, if my blood sugar's low, and I'm also getting some muscle cramps, then it's a cortisol issue. I can't really fully put it into words, but they do feel slightly different. And I am off

Scott Benner 1:03:08
the back though, like in a crisis. Is there something you can do?

Christina 1:03:14
I'm on oral steroids. So I take a dose of steroids, and I treat the low. Okay. So I eat some carbs, and I take a dose of cortisol of the steroids that will then bring my cortisol level back up to where it needs to

Scott Benner 1:03:27
be oral steroids are a consistent constant for you every day.

Christina 1:03:32
Yes, I cannot go even one day without steroids. If you don't have enough cortisol, your body shuts down and dies. So without the oral steroids, I can die within a matter of hours. It's also if I were to be in a car accident or something like that I now have to wear ID that says I have Addison's because if they don't give me an immediate dose of steroids, I can quickly die from not because normally a normal person if you're in an accident, you're you suddenly your body will like triple how much cortisol it's making. But since my adrenals can no longer make cortisol, I need to know and what's really interesting, so about a month after diagnosis, I actually broke my ankle. So I got to experience stress dosing, you have to take about twice your normal amount of steroids when you have an injury or illness. Because your body needs more cortisol to help your body heal from the injury. And so I already got to experience the up dosing and the increased steroids needs needed after that, so it just, if you think type one is hard to begin with, when you add something like Addison's in it just becomes that much More complicated to decide, okay? Is this an Addison's issue? Or is this a insulin issue? What's really interesting, so I don't get adrenaline rises anymore. either. I don't get angry, you know, if I'm, if I'm excited about something, my blood sugar doesn't go up anymore because there's not the natural cortisol release that other people would get. So it's really in a lot of ways civilian like, knowing my having to learn my diabetes all over again, too. And honestly, I had somebody else suggest this. They it would be so much easier for life if they would make a cortisol meter for home where we could test our cortisol and because honestly, it's a still a guessing game. You get symptoms. If you have too much. You get symptoms, if you have too little.

Scott Benner 1:05:56
How do you get too much? Do you just scare yourself?

Christina 1:05:59
No, you just have to wait for it to well, you could get up and try to move around more and try to get your body to absorb it more. But most the time, it's just wait, wait it out.

Scott Benner 1:06:11
I've been looking while you're talking. I mean, Addison's is a rare disease, like fewer, fewer than two is fewer than 200,000. Americans have it. That's yeah, that's why you're not getting a meter

Christina 1:06:22
as right. But as type one diabetics, we are 10 times more likely to develop Addison's than the general public.

Scott Benner 1:06:29
Oh, so a fair amount of that 200,000 has type one you're saying?

Christina 1:06:33
So there is actually a group on Facebook of people who have type one and Addison's. And from my experience talking to people, whichever one they got second is the one they most would like to get rid of. So if they had Addison's first and then got type one, they hate the type one more than the other sense. Interesting. If they had the type one first and then got Addison's. They hit the Addison's part because it

Scott Benner 1:06:58
is autoimmune.

Christina 1:07:01
It is yes. It's pretty much on the same autoimmune spectrum as type one and thyroid one because it's the endocrine system.

Scott Benner 1:07:09
I was gonna ask, do you have thyroid disease? Actually, I

Christina 1:07:12
don't. That seems to be one of the few ones few diseases I have quite a few autoimmune issues at this point. I somehow still managed to avoid thyroid.

Scott Benner 1:07:23
What about the anything you can do for that? Um,

Christina 1:07:31
I do have a muscle relaxant medication I can take if it gets really bad, but it also makes you really drowsy. So you can't really function while you're taking it. So I do I actually do take it at night to kind of because I can't otherwise get my muscles to relax enough to sleep at night. Usually. I do take a muscle relaxant at bedtime.

Scott Benner 1:07:49
Does the weed help? Ever try that? Oh,

Christina 1:07:53
you know, I, I actually tried. I tried the CBD oil. I didn't find that that actually did.

Scott Benner 1:08:01
So that might be a marketing scam. But I mean, like, yeah,

Christina 1:08:05
I, I, I want to try to be able to function somewhat. So I don't want to do the actual hard stuff. But yeah, it is. It is what it is. I'm mostly able to function again, stress is a really big trigger that will make it worse. So I do also just try to avoid is I mean, it's not it's not possible to always avoid stress in your life, but I do my best I do. I do water aerobics twice a week. That really does seem to help with the fibromyalgia because it's low impact muscle. Exercise, but yeah, low impact movement. So yeah, but this Addison's has been. And honestly, I still am in the period of time where we're still trying to find the right combination of steroids. That's going to work best. I would say I'm maybe 50% Better than I was at diagnosis, but I still am not back to where I was before all of the symptoms started a year ago. I still tend to sleep more than I used to. Yeah, energies i I am fully addicted to caffeine again, right now. It's kind of

Scott Benner 1:09:21
you get headaches or is there anything?

Christina 1:09:25
Like I'm not necessarily from the from the Addison's, I do tend to still want to err on the side of not having quite enough because for me, the symptoms of having too much is worse. What are those? So yeah, I get all jittery. And I can't sleep. If I've gotten too much before bedtime. It's like not going to sleep pretty much. I mean, I kind of will go in and out of sleep but it's an I'm aware of the time the whole night kind of sleep. And there's really nothing you can do but just try to let it work its way out of your system. So Yeah, it's but I just I just, I can't fully explain it. It's just really annoying having too much in your system. It's just a very jittery, and I just I feel like I can't think straight.

Scott Benner 1:10:13
How about your extended family? Is there any autoimmune stuff going on with those people?

Christina 1:10:18
I do have one sister with some autoimmune issues. It's no, no diabetes, really. I've had a few older relatives to get type two since since my diagnosis, but no type one that we're aware of. There has I've had, I've had grandparents and aunts and uncles with auto immune issues as well. So there does seem to be some precedent for the auto immune. There seems to be a few people in each generation that just seems to get all of it.

Scott Benner 1:10:50
And I and your family like it? My

Unknown Speaker 1:10:52
family line is I look back. Yeah, kid gets the full. Yeah,

Christina 1:10:57
yeah. So like, my grandpa seems to be the one of have in his family. That was the one that got autoimmune stuff. And have my mom, my mom's one of six kids. And a couple of them have seemed to get some of that I mean, stuff. And then there's six kids in my family, too. And two of us have seemed to be the ones that have gotten to more of that.

Scott Benner 1:11:16
Do you have any children?

Christina 1:11:18
I don't. Okay, I don't. A lot of kids that I'm an honorary aunt to, but none of my own. So

Scott Benner 1:11:27
with all this present problems, if you wanted to.

Christina 1:11:35
I still have held out some hope of maybe still having some children, obviously, at 42. I'm starting to run out of time, and I've just really wanted to try to get my health stable, and it just doesn't seem to want to stabilize. So I can't seem to go more than a couple of years without a new diagnosis. So I've kind of accepted at this point, it's probably not going to happen. I still would consider adoption at some point. But yeah, it's, it's more of what I've been able to physically handle the stress of it. And I don't know at this point that I'd want to put my body through.

Scott Benner 1:12:14
Yeah, what my like, yeah, it's just, you're gonna adopt, like a 16 year old 15. Glam for a couple of months, then move them right along to college. I'm fit. And I'm exhausted. So I don't know.

Christina 1:12:28
What's interesting is I would consider taking a type one child two that needed a home. So I read I feel like at this point, and I will have to say, Scott that I only started finally listening to your podcast earlier this year. But what's really funny is I recommended I've recommended to other people for at least the last year, some some reason I got it in incorrectly in my mind that it was mostly an adult parenting type one

Scott Benner 1:12:55
thing, I don't see it as leaning towards either to be honest, right?

Christina 1:12:58
Well, I know that now. But before I listened to it, I really thought it was just for parents of type ones, I can understand that. So but then somebody on Instagram posted the quick start, listen to guide. And I finally went okay, but I still think I thought I was listening. So I could tell other parents of type ones about it. I wasn't starting to listen thinking it had anything to do with me. But then also, I wouldn't really have considered myself struggling. Because I kind of, I got to know my own diabetes really well. And I am more of a logically analytical mind that kind of person. So I was able to see Oh, my Basal used to be just a little bit here, kind of things. And I could look at my graphs and kind of probably understand that a little bit better than some people but I will have to say, my best day when see before the podcast was about 5.8. And since the podcast, it's now been 5.4.

Scott Benner 1:13:59
I like this part of the Congo. When I get accolades.

Christina 1:14:02
I would say the two big things that I learned from the podcasts that I was not doing as I stopped staring at high blood sugar's waiting for hours for them to respond before I did something else. Because that was a rule that I had learned that I just stuck with. And I really upped my game a little bit more on the Pre-Bolus scene. I I kind of sorta would maybe do a five or 10 minute but I had meals I knew I needed the walker pole Pre-Bolus and was just a little too lazy. And I've really kind of upped my game on getting that better of knowing my Pre-Bolus times for my different meals.

Scott Benner 1:14:40
Yeah, that's amazing. I saved your life. Basically. I'm just

Christina 1:14:44
and honestly I do just love hearing the stories

Scott Benner 1:14:46
of others. Something that this morning. I listened to an episode this morning. Now I know that sounds odd to people or not. I've recorded it. I put it through an Edit process. You know, I added ads to it. I uploaded it online. And then I thought I went, there was something I wanted to listen to something this morning. And the other things that I listened to didn't have new content. And I thought, I'm going to listen to Susan, like, there's an episode that just went up with an older woman who has type one and multiple myeloma. And I just remembered it being a really good conversation. And I was like, I'm gonna listen to it as I was listening. I thought this has as much to do with diabetes as it doesn't. It does the to do about life. And, you know, even like, I think your conversations Tell us a little more about attitude and, and perspective. Yeah, things like that, you know?

Christina 1:15:43
Yeah, well, I will have to say some lessons I've learned through this. First of all, if you were even thinking you should call 911. Call 911. I mean, seriously, even as I was calling in the back of my mind, I thought, by the time this show up, the sugar I just ate, it's gonna kick in, I'm gonna be fine. I'm going to be all embarrassed that I called them. But literally, the paramedic told me on the way to the hospital, if I had not called when I did, I would have died. They would not have found me in time. By the time the Dexcom finally caught up, and my friend realized there was a problem. I would have, I would have been probably seizing by that point. And

Scott Benner 1:16:19
they would have been you bouncing above that seizing line. Right? Exactly.

Christina 1:16:23
They were only just keeping me right above 30. Like, they were not getting me to come back up. And I mean, he said later, if they calculated it was someone somewhere close to probably the equivalent of 200 carbs. Yeah, that it took to finally just get me to come up above 40. So

Scott Benner 1:16:42
that's even more, even if you were conscious. That's even more than you would have thought.

Christina 1:16:46
Oh, yeah. Oh, yeah. He's like, he's like, No, but the fact that I was unconscious by the time they got there, like if I had even delayed a few more minutes trying to deal with it myself, I probably would have passed out before I got enough information to the 911. It's funny, that's

Scott Benner 1:17:01
a very common thing. Because a very long time ago, I was having a pendant. My appendix was getting ready to rupture, right. I was home alone with my son. He was a bait like still in diapers. And he's 21. Now. So it's a long time ago. And I remember thinking, I will just go to bed, I'll feel better in the morning. And I thought, well, I'll get him ready for bed. I'll put him to bed. And then I'm going to get in bed. And I Kelly was away. She was in a work trip. And actually, we were supposed to get up in the morning and fly to where she was, which is a longer part of the story not important to this part. So I'm like, I'll be fine. Like, I'll wake up in the morning this, this will be gone. And I take him into his room. And I tried to lift him up to put him on the changing table. And I almost like just dropped it my bear. I basically throw him up there before I lost control them. I collapsed on the floor. I picked the phone up, I call 911. And the pain kind of passes, and I hang up. And so then I get I get myself up and I'm messing with his diaper and the phone rings. And I answered it and the woman's like, this is 911 Did you call 911? And I said I did. But then I decided I didn't need it. And she goes, That's not usually how 911 works. Okay, what's wrong? And I started explaining it to her and she's like, I'm sending an ambulance. Yeah, I was like, I think I'm gonna be okay. And she's like, No. Well, thank you. And I was having emergency surgery like six hours later. So yeah, no,

Christina 1:18:30
I. And so that's one lesson if you even in the back of your mind thinking you'd rather be embarrassed than dead. So if it's even crossing your mind, maybe I should call 911 Call 911 Yeah, Dead people don't Yeah, yeah, yeah. And the second thing that I've learned through this is you can do everything right. You can be the best diabetic there is. And something like this can happen. But if it's still not the time that God decided for you to go, you're not gonna die. I mean, I still cannot explain why I called 911 or what even put that thought in my mind. But I really just come back to it as it was not my time and things worked out. And so not that I ever had a really big fear of lows before but this has given me even a little bit more peace that I'm not going to stress about avoiding every possible disaster. Because all I can do is my best and all I can ask of myself as my best and but I'd have to definitely reminded myself to listen to those gut feelings a little bit more.

Scott Benner 1:19:41
That I'm sorry to cut you off. Sorry. No,

Christina 1:19:44
I basically have been through every diabetics worst nightmare. And I'm still here.

Scott Benner 1:19:50
I all I was gonna say is that I think it's for a person who doesn't have like autoimmune diseases or, you know, especially type one Everybody just feels like I don't know, like, death doesn't seem like a real thing to most people, right? Like, that's yeah, it's the end of your life. It feels like a eternity from now. And so you never live with that feeling of that something bad could happen until you really know that something bad could happen. And then it's almost a little liberating. Yeah, you know what I mean? Like a little bit, like, okay, so whatever, like, I guess anything might happen. And it's like, instead of feeling like, like, there's a magic to it, where, you know, everybody gets I mean, honestly, if you ask any person, when do they think they're gonna die? Everybody's like, oh, probably my, like, 80s or 90s. You know, like, go ahead and look at actuarial tables. That's right, when we all die, you know, like, so. You just get that feeling of it's gonna be okay, I'm gonna be alright. And I don't mean that you have the opposite feeling. I mean, that. I would think you would have some sort of, like I said, just clarity about it. But yeah, yeah.

Christina 1:21:05
Yeah, I mean, I've definitely had my days where I've gone. Oh, my goodness, I'm so tired of dealing with this. Why didn't I just die that night and be done with this? I mean, I can't. I have to admit that's crossed my mind a couple times. And I go, but no, honestly, I'm still here for a reason. And I still got purpose here. And honestly, statistics say that there's a very good chance there's at least one person that's listening to this that's develop the symptoms of Addison's and hadn't hasn't even been diagnosed yet, because, honestly, most people stories that I've heard, they have almost died before finally getting diagnosed. It's one of those rare diseases that doctors just aren't good at looking for. And people, it's not the first thing that's going to come to their mind. So I just tell people, if you think there's even a chance you can have this. The standard test that they start with is a morning cortisol test. But I actually also know from experience my own experience, you, you can actually continue to pass the morning cortisol test, and not have enough cortisol through the end of the rest of the day. So I've told people if it comes back normal and you still are suspicious of a cortisol issue, ask for a 24 hour cortisol collection test

Scott Benner 1:22:16
was anything we have to pay anything like all day? Yes, it is. Yeah, it

Christina 1:22:19
is. But that is really the best way to determine if you're making enough cortisol because it's slowly dies out. I actually can point back to a surgery I had three years ago, where my blood pressure kept crashing after surgery. And I actually think in hindsight that I was already starting to struggle with making a court was all back then interesting. Because I can point back to situations of stress like that, where I was having weird symptoms. That I think now we're actually because in those times of stress, I wasn't able to make enough even if I was had enough for most days. Yeah, Harris was already it was already on decline. But yeah, it's been since July of I mean, I lost 50 pounds between July of last year in April,

Scott Benner 1:23:04
Jesus. That's a lot.

Christina 1:23:07
I mean, there was, and yet the doctors kept saying, we're not we can't find anything wrong. So

Scott Benner 1:23:13
are you losing weight like that? And you're not trying you got to be like, Nah, something's wrong. Right? Did you think you had cancer? Well, they

Christina 1:23:19
kept saying, Well, what are you eating? I'm like, Well, yeah, I kind of not really eating.

Scott Benner 1:23:23
I don't eat much. Oh, okay. I would have thought I had cancer. Just so you know, I would have been like, that's definitely what's happening.

Christina 1:23:29
My GI doctor kept trying to find ways to get me to talk, you know, to eat more, thinking that that's why I was continuing to lose weight. But seriously, I had days where I had maybe a salad and that's all I had the whole day. Yeah, I mean, I would do maybe a protein shake here and there. But I mean, I just I was not hungry. And honestly, I loved that I was losing weight without trying. So lack

Scott Benner 1:23:53
of hunger is a to do with the Addison's. Yes. When you don't

Christina 1:23:57
have cortisol to break down your food for energy, the natural response of your body is to just not be hungry, because it's not doing anything with the food. But that's also why you get so incredibly fatigued and start sleeping so much because you're not getting any energy from your food or because even when you eat, I don't know exactly where the food is going when it's not being broken down. I don't completely understand that process.

Scott Benner 1:24:22
Were you able to force yourself to eat when you weren't hungry?

Christina 1:24:26
To a certain point? Yeah, I mean, there was times. Yeah, I mean, I occasionally would still stop and get my favorite meal, which was encouragement to eat but even when I ate I still was losing weight. So I just Yeah, but I just food had no appeal to me. I just, I wasn't in the mood to every anything like usually when you're hungry, you like have something you are thinking about. Oh, I didn't do eating that. There just wasn't ever that feeling of, Oh, I could really go for it. Good, you know burger right now, or, Hey, I'd love a piece of chocolate right? There just wasn't ever any of those thoughts or feelings about your food had no interest to me. So

Scott Benner 1:25:10
any specific food over another or no? Like was Nope. Nothing like

Christina 1:25:14
no, just just no interest in eating. Yeah, I can't really explain it other than food had no appeal. And so I just And honestly, half the time, it's just I didn't even think about eating. I'd get to nighttime and go, Oh, my goodness, I haven't even eaten all day. And it just because I wasn't hungry. I didn't ever think about it. And yeah, it just it was weird. And in hindsight, it makes so sense. I really should have been paying closer attention thinking, Okay, this is not normal. And pushing a little bit harder to Yeah. Okay, figure this out something. But yeah, I don't know, I, I deal with a lot of health stuff. And in a lot of ways, I'm used to just pushing through no matter how I feel. And I just kind of gotten that mindset again.

Scott Benner 1:26:07
It's hard to look, it's it's hard to even want to look deeper. Sometimes like you're like, Oh, God, there's

Christina 1:26:12
exactly, it's like, well, and here's other interesting things that I've realized now. So the Starlene that's because your stress response is not working properly. So your over your over, your body can't properly respond to stimuli, because without the cortisol, which is why I was struggling so bad, but there was other random things like my fingernails were breaking all the time, which I thought was kind of odd. But that ended up being a cortisol issue. I mean, there's just was really random things that I figured out after I got on the medication going, Oh, is that why that was happening?

Scott Benner 1:26:44
I want to thank you for sharing this with me. Because if any of this stuff ever happens to people I know, I'm gonna know immediately from all of your stories. So yeah, I'm gonna I'm gonna turn into the auto immune Dr. House if I keep doing this much long. Well, you're, you're startling. Oddly, I know what that is.

Christina 1:27:03
But the really classic ones are the loss of appetite, the weight loss, and the tiredness. I mean, the fatigue was at levels I have never experienced before. And I had people that would just look at me go and you know, look at it. And I'm like, Yeah, I am really tired. And I mean, I just I just was dragging through life, and it was noticeable to other people. And so those are considered the classic symptoms of Addison's.

Scott Benner 1:27:36
And I appreciate I really want to thank you so much for doing this and for reaching out, and it's definitely not a topic that a lot of people have have spoken to me about. So I'm really happy to add this to the podcast. I appreciate it very much.

Christina 1:27:49
Yeah, well, I'm just I want people to be able to learn from what I've been through if I can get anyone to avoid almost dying like I did. That that's a win and honestly, it's, it's there's there's many people that think that there are people that have died from Addison's without ever knowing they died from Madison's because it's not something they necessarily test for post mortem, either. Oh, I see. So, yeah, I mean, there's they assume there's actually probably diabetics that have died from a low low blood sugar that probably had something extra going on like this and didn't know it. I mean, if I had died that night, I don't think anyone ever would have known. Yeah, that would have I don't think they would have just assumed I died from a low blood sugar. I don't think anyone ever would have realized that I have out of sight out Addison's so. Yeah.

Scott Benner 1:28:42
Yeah, that that's a an interesting way to end because I it didn't occur to me either. That

Christina 1:28:48
yeah, no, I realized if I had died that night, they would have just put it down that I died from a little bro trigger, they wouldn't have ever gone and looked into anything else. Yeah,

Scott Benner 1:28:55
that makes sense. Okay. I, again, I really appreciate you doing this. I want to thank you very much.

Christina 1:29:01
I appreciate you having me. I I really just want people to be aware and especially type ones. They do say if you read online that the average age for Addison's diagnosis is between 30 and 50. But there are parents in our group on Facebook who have children who have both type one and Addison's. So it really can happen at any age.

Scott Benner 1:29:21
What's that Facebook group called?

Unknown Speaker 1:29:24
A

Christina 1:29:26
I think it's pretty simple, but I can it's pretty stupid name for I think it's a pretty simple stupid name of Yeah, it's type type one diabetes, type one diabetes, and Addison's disease is the name of the group. So yeah, it's pretty easy to find.

Scott Benner 1:29:45
Okay. I just want to I want to just say here so that

Christina 1:29:49
Yeah, yeah. And I do talk pretty regularly on my Instagram about living with Addison's and type one. So

Scott Benner 1:29:57
what's your what's your Instagram? Hey,

Christina 1:30:01
Korea CRI A underscore t Wendy night. So yeah, I also bring awareness there of what it's like living with Hypponen. Edison's I appreciate it. So cool. But yes, I really appreciate the podcast and I share it with others as much as I can of how much I've even learned since listening to it and going you're right, why am I still following these rules? I know myself better than Well, now, why am I why am I staring at this high blood sugar? I know after an hour if it hasn't budged. It's

Scott Benner 1:30:32
not going to. Now that you know that the podcast is for everybody. It's easy to is it easier to share it now? Do you ever get to share it with adults?

Christina 1:30:41
I do. But I haven't been able to convince anyone to listen yet. So maybe when when I tell them to come listen to mine, maybe last year this realize they need to start listening to the other show.

Scott Benner 1:30:50
Well, if they're here, now you listen to Christina she she's talking about.

Christina 1:30:55
So yeah, I'm like, I really wish that I had this a diagnosis, I would have been so much better off

Scott Benner 1:31:01
of so right. Christina, a guy that doesn't have diabetes is gonna talk to you about diabetes. Well, exactly.

Christina 1:31:07
Exactly. And some of the, some of your concepts do sound really radical, like, do they really, but honestly, they Well, compared to what the doctors are saying to do. Yeah, I mean, they sound dangerous, almost to someone who doesn't know better. But again, you know, your own diabetes better than your doctor does. Right? Yeah. And yeah, so

Scott Benner 1:31:27
I completely understand when people would type one, especially adults who have had it for a long time wouldn't be interested in listening to the podcast, like I guess, I there's enough people listening now that I know that a lot of you would like it. So you should hang around, which

Christina 1:31:42
again, as you said, I wouldn't have considered myself struggling. I mean, I had good a wind seeds. And I felt like I knew what I was doing. So I didn't necessarily feel a great need to go learn more. But I did learn more. And I do really enjoy hearing the stories of other people sharing.

Scott Benner 1:32:00
I share that. So if anybody's here just to listen to Christina, you should go check out what do you think the pro tip episodes or just listen to some other stories or something like that?

Christina 1:32:08
I would say message me. And I'll actually I will say when this goes up all for a few days on Instagram posts, the ones that I would say to go start

Scott Benner 1:32:16
listening to Oh, could you thank you very much.

Christina 1:32:19
I appreciate it. Follow me on Instagram and I will make sure that I share. Here's my favorite one.

Scott Benner 1:32:23
Christina, you sly little social media pimp liquid. I'm not gonna give it all away here, Scott. They got to come find me.

Christina 1:32:32
I don't have a ready list in front of me. And I'm going to feel like a bit of forget one. And I'm a perfectionist. So I want to make sure that I have a ready list.

Scott Benner 1:32:41
I gotta go. I have to go get my eyebrows waxed. She's getting hurt. Or not. Well, she does threading. Oh, my god. I can't believe I said waxing. She does threading and she's getting her senior portraits done tomorrow. So I am in charge of taking her to that right now. But thank you very much for doing this with me.

Christina 1:32:57
Oh, you're welcome. Thank you for having me.

Scott Benner 1:33:08
A huge thank you to one of today's sponsors. G voc glucagon. Find out more about Chivo Kibo pen at G folk glucagon.com Ford slash juice box. You spell that? GVOKEGL you see ag o n.com. Forward slash juicebox. It's been a long episode. I'm not gonna hit you with too much here at the end. Just all the rest. Find the Facebook page. Take the T one D exchange survey support the sponsors. Share the podcast with a friend. If you're listening in a podcast app, please subscribe and follow. And if you're not listening to an app, come on. It's 2020 to get yourself an audio app. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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#647 Vagina Blog Podcast

April Davis interviews Scott for The Vagina Blog Podcast.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

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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 to episode 647 of the Juicebox Podcast

Well, today's gonna be a little different, probably not that much different. But you'll see, I woke up one morning to an email inviting me to be on a podcast. And as you'll hear later, they usually don't answer those emails. But this one, well, there is something special about it. So today, you're going to hear an episode that is also simultaneously going to run on a different podcast. This is apparently quite a common thing for podcasters to do, although I have never done it. Please remember while you're listening, 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. We're becoming bold with insulin. Just a moment, you're going to hear April from the vagina blog podcast interview me about how we manage our periods with type one diabetes. And of course that points things go off the rails and I say weird stuff. So there's that to look forward to.

This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor. If you're using insulin, you should be using a Dexcom find out more@dexcom.com forward slash juicebox. Fair warning before we start if the word vagina makes you uncomfortable, I'd stop listening right now. I'm gonna record on my into I didn't know we were starting a lot of pressure. Right now I'm recording. I'm literally sitting here wondering how I'm going to stop myself from just overtaking this Congress. Guess I'm good.

April Davis 2:14
I'm good. Guys. I am so excited today to be talking to Scott Benner. It is very rare, but I have a male on the podcast. But I was just too excited to talk to Scott because and this is very selfish of me. I wanted to create an episode around type one diabetes, and everything that that has to do with female body health. Scott has an incredible podcast called The Juicebox Podcast, it is single handedly the most useful information I have found as a parent of a child with type one diabetes. So if you are listening to this episode, it's maybe going to be a little bit type one diabetes specific, but I super don't care because the type ones need it. So, Scott, welcome. Tell us how you got into this. Tell us who you are. Tell us about juicebox

Scott Benner 3:03
April, wait, this is just gonna be about diabetes. I have so many euphemisms for vaginas written down. And I really, I'm trying to know,

April Davis 3:10
don't you worry, we'll get into that.

Scott Benner 3:12
Is that upon? Are we starting off right away? Exactly. Because I tell my every woman in my house, I'm like, at the end of your inspection. I don't know what you guys call it. I I think you should ask the doctor. So on the whole Is everything okay? And I don't, I don't know why they don't. But

April Davis 3:34
this is like when my best friend I was going in for a stretch and sweep, which is only like swipe your membrane when you're pregnant. She's like, did you just say search and seizure? And I was like, it's that's basically the right yep, that's what I'm getting done.

Scott Benner 3:45
What feature was she a cop? Oh. All right. Well, I have to start off by saying that. I don't go on other people's podcasts. I get invited on a lot of them. And I to even say that I say no is polite. I just don't answer the emails usually. But I got yours. And I'm like, I need to know why I'm being invited on a podcast called The vagina block. Even if I was a woman, or if I even ever once had a vagina. I'm assuming it wouldn't even work anymore halfway because I'm 50 So like,

April Davis 4:25
you're getting up there. Yeah, I

Scott Benner 4:26
mean, it would just really be good for picking at this point. Like right I mean, I don't know exactly. Oh, really? Oh dear. I'm lying in bed. I'm looking through my emails trying to like you know, get the energy to get out of bed. And I'm like, What is this this and I must have emailed you back on medium like I need to talk to you on the phone. So I went from I usually don't respond to people to having a personal conversation with you because I just

April Davis 4:49
which was fantastic because and to share with you guys like Scott had recently become my very best friend as a diabetic, a parent of a diabetic. Um, there's very few resources that are like truly reliable and actually really helpful. There's a lot of commiserating out in the world, the diabetic community and the community is incredible. Like the diabetic community as a whole is incredible. It's a very special club to be a part of. But Scott was, it was like a natural progression, I felt like in our relationship was like, of course, I'm talking to you on the phone, you're my very best friend.

Scott Benner 5:19
Gonna devolve into me making sure that you're mentally stable for the next hour. Because,

April Davis 5:24
no, I'm a parent of a type one child, like, are any of us, okay,

Scott Benner 5:30
we're gonna say, has that ship sailed already? Or do you know, you're alright? So So, I mean, must be fascinating for people listening. I'm not a woman on the show about, you know, female reproductive parts. And I don't have diabetes, and I run a podcast about diabetes, I must seem like, I must, I must, at first glance, people are like, Oh, this is gonna be a mansplaining episode of Deep proportion. Right? I just talked about things in detail that I have no idea about. But exactly. Gosh, how did I end up doing this? Is that the question I've talked so much?

April Davis 6:04
Yes. Tell us where you came from. Okay.

Scott Benner 6:08
Is that Is that are you trying to get me to say, I came from my mom's vagina, I feel so much Russia. I'm teasing you. I have two children and a wife. And with that wife, I made the first baby, everything seemed okay. And a few years later, we got all full of ourselves. And it's like, we're good at this. Let's just do it again. And we made another one. And that one came out fine. We were like, boom, we're geniuses. And then two years into that. Our second child Arden was diagnosed with type one diabetes. So that was 2006. In the summer, and back then, like, it's funny, like, blogs weren't really a thing, or they were just sort of starting to become that was the

April Davis 6:58
beginning of the blog world, because that's about the time I kind of started dabbling as well. That was like, everyone had a blog spot. But we were all kind of trying to Yeah, yeah,

Scott Benner 7:07
people were drifting out of what was the one that was just basically animated pictures, MySpace, and either Blogspot or it was, what's that? What's the other one? Look how old I am. WordPress, WordPress, you have it. And so my daughter gets diabetes in the first year is a real slog, it doesn't go well, or a one sees in the eights. I have a general feeling most days that I'm killing her. putting her to bed at the end of the night, like talking to myself as I'm walking out of the room, because I hope she's going to be alive in the morning. Like, I don't know what I'm doing. Everything's terrible,

April Davis 7:42
which is so that's so real. Like I like when I listen to the episode that you had talked about that exact feeling. I was like that is that describes it perfectly like, well, they're probably gonna die tonight, I did the best I could I can go to sleep knowing that we really tried. And it will completely make sense when they're alive in the morning,

Scott Benner 7:58
no technology to speak of. Yeah. Now there are continuous glucose monitors, there are pumps, I mean, algorithms that help you. I mean, I don't want to give anybody who doesn't understand type one, the feeling that it's just easy, but it you know, you can, if you have the money in the insurance, you can kind of see what's happening, which is Yeah, valuable. Right. So let's sleep at night. Yeah, do I have slept more since the technology? Anyway, on her one year anniversary, as it was coming up, I started getting overwhelmed with the idea of like, helping, research, I guess, is how it felt like, I was like, Well, I'm not a doctor, I'm not a, I'm not smart. I'm not gonna figure this out. Like maybe I can push money towards people who might help her. And, and I just didn't know how to do that. So I started writing an email. Like, I would like send emails out to people, like, you know, just like, This is what diabetes is about. And it was kind of lame. And then I tried to raise some money. In the first year, I think I raised like, $1,500. And I was like, Oh, God, I'm bad at this, too. You know, I can't take care of diabetes. And I don't know how to raise money. And but on those hard, it wasn't easy. So on the first anniversary, I found a piece of software on my computer. I'm a Mac user, and it was called iWeb. And it promised the magic of being able to put my thoughts onto the internet. And to give it a landing page kind of thing is how they talked about it. So I made this little blog, and I started blogging about what it was like for our to have diabetes. And then I used my email, which maybe was reaching, you know, three or 400 people that I knew in the whole world. And I said, I'm going to do a day of diabetes, where I'm going to email you every time I touch her, so that you can understand what it's like and that information will also be on the blog. Well, I'm gonna say by about two o'clock in the afternoon, I started feeling bad because a no one had asked for these emails. And oh, yeah, it's not like I asked him to opt into it and and be I just was like, God, if they've got the point already. If they don't, they don't care. Yeah, like a month later, I got an email from this lady living in England who I don't know, and could not in any way figure out my connection to her. And she's like, Hey, your blog is really helping my family. Yeah, I was like, I don't, I don't even know what she's talking about. Like, I didn't think I didn't think of myself as having a blog. Like, I didn't think of any of that. And it went on like that for quite some time. Because unlike WordPress, or the other stuff, there was no SEO, it was all word of mouth, if it if it got around at all, and I put no effort into making it bigger. And I something about not having an eye on making it amazing. Let me build it very organically instead. Uh huh. all word of mouth. So unlike, you know, nowadays, we're all young people. I'm just kidding. I just, I just feel really, you know, you're like, people are like, I'm gonna start an Instagram. And, you know, I'll be a trainer by Friday. Or, you know, and I just was like, I don't care. Like if this reaches people and helps them right on. And if it doesn't, I mean, it doesn't matter to me. I'm not trying to make money with it. I don't want it to be a business.

April Davis 11:10
And you are traveling, sharing, like, I'm already trying to stumble into this knowledge. I might as well just share what I have what I that was like the beauty. There was no like, all the pictures have to be perfect. There was no like, yeah, I have to push this. Like, what's my SEO strategy? Like? It was those early days of blogging were like, so delicious and naive and like, really altruistic? Well, I

Scott Benner 11:32
did it for the right reason. And there was no real way to make money with it. Anyway, it's not the world that yeah, I didn't today. So there was no like, eye on the prize kind of feeling. And I had learned from other people, by watching that if they got a popular blog, then they would make the deadly mistake of shining it up and making it look corporate. And then people don't like it anymore. And I was like, so you built this thing by coming to people saying like, look, this is me, I'm in my underwear in my living room typing this to you. And then you made it look like a formal website and like, and now you're like, people don't read it anymore, you know, or you stop saying what you thought or whatever. So I was just always very honest. And the truth is the first number of years of it, were just me being it was very, like raw nerve, like something would happen. Mainly, that thing would be bad. I would share it online. And other people would say, oh, that happens to us, too, which I guess was, I guess that was nice, because it gave people a feeling of camaraderie. But oh, yeah, after a while I started thinking, This isn't really valuable beyond that. And wouldn't I like it for it to be valuable beyond that, like the way I usually say it is, it's nice to know, at two o'clock in the morning, you're not alone? Because there are other people out in the world fighting with diabetes to. But wouldn't it be better? If that didn't happen to you at two o'clock in the morning? Like, let's talk about how to stop it from happening and stop commiserating over it and saying, Oh, this is what diabetes is. And it's just what it is. So I hate that term. I hate it when people say, Oh, that's just diabetes, because it makes it feel like it's out of your hands. And sometimes it is, but not as much as people think.

XCOM That's right. We're here to talk about the Dexcom G six continuous glucose monitor, and all the things that will bring to your life. Here are some of them in no particular order. Calm data, a sense that things aren't out of control. That enough, do you need more? All right, I'll give you more Hold on. You are a loved one has type one diabetes, or type two diabetes. And you want to see the speed and direction of your blood sugar. So you get yourself a Dexcom G six continuous glucose monitor. Yeah, put it on. And the next thing you know right there on your Dexcom receiver or on your Android or iPhone. You're looking at your blood sugar. I know right? It's cray cray. It's constant like the numbers always there. It also indicates to you the direction your blood sugar's moving, is it stable? Is it rising slowly? Is it rising, quickly, falling slowly falling, etc. You understand the direction. So you've got the number, you've got the direction and there's this beautiful graph that shows you where you've been. So you understand kind of the backstory of your day. People can follow your Dexcom I am following my daughters. I have picked up my iPhone, and I'm opening it Arden's blood sugar is 116 and it's stable. So that means it's not falling at an appreciable rate. But if I look at the graph, I can see that she's coming down because we just changed a pump. And her blood sugar got a little sticky for a minute during the pump change and we've been pushing it down since then. So while I believe that she's not falling at any great rate, I do expect this number to keep drifting over the next hour or so. Just based on what I'm seeing and my experiences using a Dexcom. Now, if that's not enough, I don't know what to tell you. I think you should head over right now to dexcom.com Ford slash juice box and find out how to get started. At the very least, check out that Hello Dexcom offer they have because you may be eligible for a free 10 day trial of the Dexcom G six. What did I just say? Free. Go find out if you're eligible, because you want to see this. You know, if you if you try it out, you don't like it. That's cool. But I think you're going to fall in love, fall in love with the comfort and security that comes with seeing the speed and direction of blood sugar. It just opens up a whole new world. And I would sing a whole new world, but I believe it's copyrighted. So I can't. But I could reenact my favorite scene from a lot. Princess Jasmine. I'm kidding. dexcom.com forward slash juice box, head over and check it out. Things that I described in this ad are of course, the results that we've achieved here. And yours may vary. But I'll tell you what's not gonna bury seeing that data, understanding how insulin and food affects blood sugar. That's a game changer. That that is absolutely magical, like a young man flying on a carpet. See what I did there. No one thought that was gonna tie together, not even me. Listen, if you can do it, a Dexcom is gonna make a big difference. I think you're really gonna like it. I hope you check it out. There are links in the show notes, to Dexcom and all the sponsors, those links are also available at juicebox podcast.com.

April Davis 17:12
Something that's been so helpful for me though, I think it takes a certain level of bravery and brazenness to be able to be like, Look, you went and sat down with your doctor, they decided to do X, Y, and Z. I'm actually living this crap day to day, let me give you some actual real world advice. Because I think we get I for me, I get caught up in like, I don't want people to come at me later and be like, That was terrible advice. And this is medical. Because even the realm of women's health is as much the wild west as the realm of type one diabetes. Like I very much saw this and like even listening your podcast, I love that you guys will so crystal clear be like, Look, we did this. And we tried this. And this problem has this. And I think a lot of people tiptoe around that. Because they're scared. And so I love that you don't tiptoe. I love that you say how it is I love that you say look, this is what we're doing. And this is what actually works. It's the same approach I've really tried to have to like female body health as a whole, because we tiptoe too much. And we don't actually share what's really like really thinking or what we're really like, I don't want to be mean, to the doctors are I don't want to go against whatever the current medical wisdom is are. But like if the medical wisdom isn't there, and your doctors are actually managing a kid, they don't really know. They don't really know. And it's the same with endometriosis. It's the same with PCOS. It's the same with like, a lot of these women's disorders. And so there there's I just I loved your brazenness in so many ways that you've just been like, No, this is just what we're doing. And it probably could totally work for you. Oh,

Scott Benner 18:46
April, you're nice. I mean, I'm fantastic. But we need to get past that. Well, I'm saying. I agree with you. And it's also a different thing. Now in the world where content content content, you have to have something constantly I'll tell you right now, if anybody, if everybody anybody ever wants to do this and thinks they're going to be successful at it, here's my analogy, take a stone, hold a lighter up to it, both stone will get hot. The second you take away the lighter, the stone will be freezing cold again. And that is trying to be relevant online. If you are not constantly holding the flame to the stone, you will go out and people will forget about you and go find you a hot stone. And because of that there's so such a push to get content out the people don't wait to find out what they're saying is valuable. They just like I hadn't thought here's my thought. And I don't do that. So if, again, being able to build slowly through the blog, I was able to build kind of a system for managing insulin. And then at one point I said to my wife, I have a way of doing this and it just works. And I think it would work for most people if not all of them because it's on such a basic distilled level. We're just talking about figuring out how insulin works in your body and then applying it to the things you're eating. And so I thought myself through the blog, and then I distilled it, and I kept taking it down until the thoughts were so small that they were basically t shirt slogans. Because at two o'clock in the morning, when you're fighting with your kids, low blood sugar, you don't need to start like pulling up, you know, something you read online and rereading it to figure it out. Like you need my stupid voice to say five words in your head, that triggers an entire memory for you that you can put into action very quickly, right? You

April Davis 20:35
don't want to be pulling out the physicians ducks reference of diabetes, I just want someone to be like, hey, trust that what what you think will happen will happen? Right? Okay, you're my new best friends. Exactly.

Scott Benner 20:44
You're correcting a low blood sugar in the blood sugars, 50. You give the kid 40 carbs. And then people just go back to bed? Well, some of those 40 carbs need insulin now. Because after the blood sugar's corrected, it's gonna start going back up again. Because now you've put in these carbohydrates and not compensated for them with insulin. And so I started telling people, you should trust that what you know is going to happen is going to happen. And yeah, it's not something that means seven people sat in a room and figured out to say, I just blurted it out while I was talking one day, and then I can see what sticks to people, like, you know, so I wrote that blog, I still have it. And I do put stuff on it. But I wrote that blog earnestly, until I started this podcast in 2015. Yeah, this podcast is like, it's over. And I don't do like when people no offense to anybody listening, but like when you all say, like, I have a season of a podcast, and there's 10 episodes. And that's, I laugh at that, that's two weeks of a podcast, like you gotta like, you gotta go. So you, so I just thought, Alright, I've got to blend these ideas together, I want to help people. And I really should be clear, because I'm from the East Coast, and I cut I could come off as flippin. All of this, to me is about helping people live better like that, that it's become a thing. That's a business like that. I send out invoices for ads and things like that is is secondary for me. Yeah. And so I hold on to that core tenet of helping people. But I understand that if you take the flame off the stone, you're not going to help people anymore. So you have

April Davis 22:22
to play this exact same game. And it's all those fine lines of like, you know, am I am I maintaining this in a way that I can continue to go at this speed while also like helping helping everyone. So I'm assuming if someone is listening to this far, they probably have some interest in type one. And what to know, like, let's let's get to the good stuff. So let's, let's talk about this you are managing a teenage girl. And so you are familiar with what it looks like to manage someone with a menstrual cycle. Yeah, and I even love I brought up this to you earlier, like you just barely did an episode around masturbation, but I had not even thought about how masturbation can affect blood sugar levels, which is really like when it comes to managing a type one of being a parent of a type one like, and even maybe being like anyone listening that has type one. Maybe that is me having clued into them like oh, oh, oh, no. All right. So my menstrual cycle,

Scott Benner 23:22
I hear what you're saying. You're saying stop chit chatting, Scott, let's get to the meat. Forever. You want to make this? Do this. No problem. So let's be clear. First of all. During the masturbation episode, I did not speak about my daughter. I just

April Davis 23:38
Yeah. But you do have a teenage child. She's 17. A young adult someday.

Scott Benner 23:45
Yes, 17. She's had diabetes since she was two. And so it kind of goes back to the tenants of the podcast, which are, I think one of the mistakes that people with diabetes can make. And I want to be clear, so I don't sound like an ass. I think that one of the reasons I'm good at talking about managing insulin and type one diabetes in general is because I have a third party perspective, that's really a first person heart, and I can be dispassionate about it. Because I'm not the one in the panic situation. If someone's blood sugar's crashing, I understand all the emotions and the inability to even maybe handle your own body as your blood sugar gets lower, but I don't have to have that I'm kind of an observer. So I can see what works in a situation and apply it. So for me, when I tell you, I mean, if you're still listening and you care about diabetes, here's what I think. I think you get your Basal insulin right. You learn to Pre-Bolus your meals correctly. You learn the difference in the impacts of foods heipo you how to put it simply as that you know, eating a handful of popcorn even if it's 11 carbs might impact you differently than having 11 carbs. papaya, right? So there's the glycemic load and glycemic index of foods, you have to understand the difference between them so that you can use the proper amount of insulin and not just do that thing where Oh, it's 10 carbs, I don't understand why it didn't work. And then after that, I think it's about staying flexible. And I think people have trouble with that. And they can get very mathematical about diabetes, which I don't think works very well. And nice terminal about Yeah. And then they go

April Davis 25:27
like, this is supposed to be this. There's a lot of supposed to in the mathematical.

Scott Benner 25:32
Yeah, there's no supposed to. And yeah, and and then the next thing that happens to them, is they get caught up in the why. So no,

April Davis 25:40
same. get offended by it.

Scott Benner 25:44
Why can't I figure out why this is happening. So to me, I don't think you like if you jump out of an airplane with a parachute on and it doesn't open. You don't go, well. This is up fine. How do you do? That guy told me there's a parachute back here that work? You start wondering if you have another shoot? Like, is there one on the front? How does this thing work? Right. So people why themselves right into the ground?

April Davis 26:05
Oh, and waste so much time? Just correct. And move on? Yeah. In the moment is so frustrating. I'm like, I did everything right. What is going on? Why? Why? And then the figuring out the white in the meantime, just correct them. And

Scott Benner 26:21
I don't know why some people's brains work that way. But mine doesn't. And I don't know why some people have trouble. You know, saying out loud. My doctor doesn't give me great advice. But I don't have trouble with that. I don't care. I don't care about anything that would impede my daughter from having a less than healthy life. So Right. So I apply that idea to the menstruation part. Because, listen, I again, I don't know what it's like to be a woman. But from a third party perspective, it seems to be an unholy dumpster fire every once in a while, like what happens to you guys. It's horrible. You know, and you know, muscle aches and headaches and joint pain, and I messy here. And everything's horrible. And like, Oh my God, I need another Pat, I need this. I'm 19 years old, and I don't want to put a tampon in, but I want to go sweat. Like, I don't know, any of it. God bless you. Okay, like, it's amazing. So what I noticed was, is that there are times of the month that my daughter needs more insulin, and there are times of the month that she needs less. And I don't argue about that in my own head. I just accept it and handle it with the same way I would handle everything with diabetes. So I'm guessing something about ovulating. Gets your hormones rolling around. Those hormones then cause some issues with using insulin because you see it with boys right when boys grow. And they then they have a hormone influx. They have different insulin needs poor girls as soon as they start getting their periods almost immediately at for Arden. It wasn't like day one, but a few months. I feel like she had like a training wheels period for a couple of months. totally right. Yep. That makes sense. Yep. And then. And then I started realizing like, Okay, well, this, when you see these things happen, that's an indication that she needs more insulin, stop worrying about why and move the settings so that now the settings meet the need, right? Just meet the need. And then as you see it drift away. And for Arden, it's usually when the here's where I get stuck me on your podcast, what do we call this at the event? When does it like the full? I don't know what to say.

April Davis 28:35
Demonstration occurs?

Scott Benner 28:36
Listen, when whoever invented people, I'm gonna just guess it was the end of the day, right? April, whether you want to believe in God, or, you know, the big bang or whatever, somebody was sitting there, and they're like, What do we do to indicate they're not pregnant? And the guy's like, oh, I want to go home for dinner. Like you figure it out. And then like the guy like in the office got to decide he was like, I don't like my mom much. We should make them bleed out of their vaginas. And like, just terrible. So when, when that thing happens over the next 36 hours or so her insulin needs start to drift back to where they are.

April Davis 29:12
So I have a question about this. And because obviously I've been listening your podcast so I know Arden is on birth control which suppresses ovulation and and flatlines all your hormones. Have you noticed a difference coming from an ovulating cycling? Teenage female into now a completely flatlined? No longer ovulating? No longer menstruating female?

Scott Benner 29:37
Yeah, the the insulin needs are more stable again. But yeah, but you can still see them. The difference is still interesting. Yeah, just a little bit. So it's like, it's not as much of a change, but it's still a change. And it can be a little worse now. You can go back and forth a little bit during your period sometimes You have to be able to start separating things out like this is when?

April Davis 30:03
Well, because she would be going cuz like she had like a pill

Scott Benner 30:07
your way? Actually, that's been a whole. You want to hear about that. That's been a dilemma. Yes. So that's why we're here. That's why, if somebody would have told me that I would have led with this, I'm just teasing.

April Davis 30:18
Oh, no, you wouldn't have

Scott Benner 30:22
run me over. If you didn't run me over 10 minutes ago and try to get me back on track. I'd still be kidding about something. I know. Hey, listen, if you want you go ahead and try to make a podcast if you're not chatty, it ain't easy. I know. So orden starts getting How did it start? I'm gonna guess it

April Davis 30:43
like that. It's a withdrawal bleed. So you're withdrawing from a synthetic hormone. So I could see where the insulin meets would still change with the menstruation because you're going through withdrawal from hormone, hormones.

Scott Benner 30:56
It can be a little more erratic during the bleeding. But so so here's what happened. She starts to get her period. I forget how old if I'm being honest. That's fine. A number of months into it. She starts experiencing this is fascinating. A nosebleed. One big nosebleed almost every 30 days, out of nowhere, never happened to her before. We're in a movie 2019 We're seeing the Joker. It's like 15 minutes left in the movie. He's about to kill Robert De Niro. Sorry, coolers. And I don't think anybody listening to this podcast is like, oh, no, I'm just gonna watch the Joker. And she looks over at me and she goes, What's going on? And blood is pouring out of her nose. And that, in my mind, looking back in hindsight was the beginning of this whole mishegoss which is, yeah, yeah, it's a yet a short, it means a disaster. And so we didn't notice that the nosebleeds were happening monthly at first. Mm hmm. And then she started talking about her period was very heavy. And then before we knew it, she was dying. Like, I mean, like it's an exaggeration, but she was like literally falling apart. And for months, like she'd get home from school pass out on the countertop, like I have photos of Arden sleeping on a countertop, like like with her headboard sitting in a chair just couldn't hold her head up. And it wasn't all the way until we realized that her her ferritin level had dropped very far. And, and we got her an infusion of iron. And she just came right back up, like, like leaving a flower out in the heat and then watering it again, you're like this will never come back. And then the next day like, Oh, my God, it's all falling green. Again, she comes right back up about a month. But somehow we didn't put that together with depleting. So normally, she just drained back out again. And then we were then I said to my wife, I'm like, holy shit. This is Oh, I'm sorry. I don't know if you're on here. Okay, this is about her period where she's losing too much blood. So we got her on a pill, they put her on low, low estrogen, low lows, didn't help anything. But they made her do it for three months to be sure. Then they moved at a low estrogen, which seems to be magical. Nosebleed stopped, period regulated. And when I say regulated, Arden was getting our period, 11 days straight to day break. And then it was coming right back again. Over and over. And all that stuff that we talked about before the tiredness and the muscle aches and just anemia. Yeah, we wouldn't stop. And so she's just like melting into a pile. And so we thought, Oh, this is perfect. We got it. Now two months ago, she starts saying I can't eat meat. And I have no idea if this is going to be about this or not right. But this is me thinking through it. And then suddenly I can't stomach meat turned into I'm hungry. But I don't have a flavor for anything. Like I can't imagine what would tastes good, right? And just last week, Arden and I read her OBS appointment, because I've been a stay at home dad for over 20 years. And I go to a lot of things that a lot of guys don't do. And we're sitting sitting in the office, and we're trying to figure it out. I think the doctor is gonna move into Yaz, is that right? No, yeah. And then we realized through talking more, it's possible that heard that our drug our pharmacy moved her to generic about the same time we think that her thing with her appetite started so we're still going to try we're still going to try the ads anyway because she's still having some weird acne that the doctors like with this pill. You should not be having any acne. So she's gonna switch around a little. But I think we might look back and find out it's just the generic and by the way, the nosebleeds came back.

April Davis 34:43
Interesting. Because they're, I mean, really the generic supposed to be pretty much the same thing. That's fascinating.

Scott Benner 34:50
Yeah. And so who knows, but I I'm a little trip. Obviously I don't seem trepidatious because I just talked but during trying to figure out During trying to teach myself about birth control pills, I learned that there seems to be two very specific camps online about it. There are people who share their experience with their birth control pills. And then there are people who yell at them. It seems like for Yes, seeming like they're talking people out of using or shaming. I don't know, I'm 50 I don't really care what the hell all you do. Doesn't matter to me. Oh, yeah. But but I'm telling you, this is what happened here. I don't know exactly if this is right or not. But the way I think about it is, if I just said something that anyone can have a lightbulb moment for, and it helps them think good. And by the way, if this isn't you, then keep moving. You don't mean like, oh,

April Davis 35:43
no, it's so share the vagina blog, the official stance on birth control is it has a time and a place. There. It's one of those things that like, unfortunately, we've presented it as like a multivitamin to people like this is it's just no big deal. Just take this small, fix everything. And the reality is, it has its own side effects. Yeah. And it's, it's essentially putting your entire hormonal system at rest. So it suppresses everything. And it's frustrating, because like the medical community uses terms like regulate, but it's not regulating, it's just turning that whole cycle off. So what you're doing is you are taking medication that suppresses everything, and then you are having a withdrawal from a medication that causes bleeding that looks like a period. And so it feels like Oh, I'm regulating. But there's a time in place for all of this, like even even knowing all that, like I was on birth control for many years, because I just really could not find a great way to not get pregnant. Didn't want to have babies April, what she's going through as a teenager. I mean, that's the other thing that's tricky. Like, you definitely have some bleeding issues that are serious. Yeah. So maybe while you wait through that and get a diagnosis, this is a great bandaid.

Scott Benner 36:56
I'm gonna be honest with you prior to this with my daughter, my knowledge and birth control pills were that I dated a girl in high school whose breasts were amazing because she was on birth. And that is all. That's all I knew about. And honestly, like, I didn't think about it. I didn't know about it. I just know that one day, I had a girlfriend. And the next day I had a girlfriend whose boobs were better yet. Now, I know I'm seeing everything you said and how valuable that could be for people. And yeah, I understand better that it's not the way I was led to believe, which is oh, you know, you just can't get pregnant and it makes your period very regulated. I'm making air quotes. Yeah. Yeah, I can tell you this, that I to the best of my knowledge, and I'm pretty sure I'm right. My daughter's not sexually active. And oh, yeah. No, no, no, no, no. No. I'm doing that's not what I'm doing. Yeah, she was and she wanted to use a pill. I know, that would be up to her. I'd be okay with that. I'm saying yeah, to your point. Like, this seemed like a reach to us doing this. This was not like an easy thing where we were like, oh, we'll just run this now. Like it was, it was hard to get to. Because Because as we read about it, and we started realizing more of the impacts of it. It did seem really serious now. You know, for a number of months, it felt like it was saving her life. And now I feel like she they're gonna starve to death or bleed to death. We can't figure out what she's gonna do first, you

April Davis 38:25
know, I have to tell you, my Murena caused irritable bowel and messed up my appetite soon as I check out that IUD at all was like, right back to completely normal. But it's one of those things like that's a side effect of some of those some of the birth controls. You just kind of have to like, you have to weigh you always have to weigh the pros and the cons on those and go okay, is this what which one's worse? And I'm gonna go with bleeding to death being worse.

Scott Benner 38:49
Yeah. Well, and that's exactly. Let me catch up for a second. You just mentioned an IUD is that the thing that looks like the flux capacitor out of the back of the future card? Like it's like, Oh, yeah. My uterus. I know what it is, like? I just, I, you would think they just put like a little guy in there with boxing gloves that could beat up the sperms. Oh, yeah, it'd be much easier. That's what it is. Yeah. So again, 50 year old guy talking about periods. I don't know what I'm talking about at the time. Oh, you're doing great. Well, no, but I mean, it's either as anyone else, I guess, is my point. And you just have to like, dive in and figure it out. And much like with with the diabetes, I only know as much as I know about it now because I cared about my daughter, and I wanted to figure it out. And that's the same thing with this. Like, I couldn't just see or be like that. Just, you know, totally.

April Davis 39:37
You just hopped back on a different roller coaster and you're like, Okay, here we go.

Scott Benner 39:41
I have like a terrible view in my head of like, you know, the pre internet life where people would just be like, ah, that's my daughter. She's tired all the time. Yeah, absolutely. Right. Right. Just bad. So, yeah, I'm not gonna know what happens. She starts the pill, the new pill. In a week or so. But But back to the the insulin stuff. Yes. While she's on while she's been on the birth control pills, getting on them was a rough ride, like her levels changed a fair amount. And then yes, yeah, that's what I was wondering Yeah. And then I started figuring out the pattern, and then I was able to change your settings to meet the needs. And we know what it looks like to switch gears when you basically have to switch gears about twice a month, you know, going into it changing and then coming out of it again, and I know what people get scared off, they're like, Well, I don't know, like, how do I turn this up? If I'm not sure it's going to happen. But to that, I'd say it's happening every month. Like you trust that you know, what's gonna happen is gonna happen and and you just kind of get out of it. Because that's, that ends up being what happens is people, they wait, the blood sugar's get out of whack, then suddenly, they're chasing these horrible roller coasters up and down, up and down, up and down. And that's just not the way insulin works if, yeah, you know, you use and I just keep learning

April Davis 41:03
that fun lesson over and over again, it's great.

Scott Benner 41:07
Let me say this. And then let me ask you a question. So in my mind, insulin you use now is for later, timing wise, but more more appropriately, if you're trying to think about it, you have to think about that the insulin I used before is impacting right now. And I know it's the same thing but it's not when you when you're thinking about it, it's it's more important to know that your blood sugar might be getting low or high right now because of a decision you made two hours ago. Because if you don't know that, and you're always fighting the fight, as the fights happening, you can never stop the reoccurring again, you're always behind in, in in my mind, you're chasing it. And only like, level people with insulin know how to like stop the chase in its tracks, which I do try to explain to people on the show. And I think we do a pretty good job actually. What is your idea? You

April Davis 41:58
did a great job I that has gotten significantly better since listening to the Juicebox Podcast. What blew my mind? was we would so my daughter loves to eat and not tell us that she ate. She's nine. So it's a nightmare. We've talked about it all day, every day that she can't do that. But she continues to which is it? We're working on it anyway. That's probably a parenting issue. Or supervision issue. Yeah, but Mary, I

Scott Benner 42:34
think it is parenting in it as much as that. It's going to take you a long time to teach kids something. So I think I was a stay at home dad for a long time. i And yeah, I'm basically a lady. I'm just, I'm missing a couple of internal parts. And I could probably be

April Davis 42:52
my job. My husband and I have switched off back and forth our entire marriage. So he's the stay at home parents. Like I love that you've done this and like had that experience.

Scott Benner 42:59
I quit my job in around Christmas in 1999. So I haven't if you made me get up and go to work today, I'd cry just chained myself to something heavy announced I'd be like, you could not make me leave this house.

April Davis 43:15
Not wearing pants on a list. I want to go

Scott Benner 43:17
shave. I want to shave and not before I realized my way about five or six years into being a stay at home dad that I would have this big crazy beard. And women would always be wearing sweat pants in the winter. And I was like none of us are shaving.

April Davis 43:32
No. Winter

Scott Benner 43:35
seemed pretty warm. Yeah, it seemed unfair that they could hide it and I look scruffy. But

April Davis 43:41
I try numbers. And what surprised me because we would always give her this big correction that she would crash and immediately go whoa, like, you know, an hour or two later. And it would be this whole like, Oh, we got to correct now. What is weird is I will now give her that same correction and crank up her Basal. And she comes in Smith for landing.

Scott Benner 44:01
Yeah, so you figured out a thing that worked for you. Like

April Davis 44:05
what in the world I give her more insulin, it doesn't crash as hard. It's the

Scott Benner 44:09
timing of it. So the you have to love you have to line up the impact of the carbs with the action, the insulin they have to happen at the same time. And they kind of create this tug of war that no one can win. And that's that's really what using insulin is to me. You if you put in, you know, if you put in insulin five minutes before you eat, insulin doesn't work that way. So it's not going to be active and doing what it wants to do. The food's gonna go in and start hitting sooner. Now the blood sugar's flying up and the insulins basically still like off on the side stretching its legs and getting ready. And before you know it, even if you started with a great blood sugar of 90 or 150 or 200, it's flying up and then all of a sudden the insulins like I'm ready to run and then it jumps into the fight. It's way too late now, because you used enough insulin for, you know, say to cover 30 grams of carbs. Add an 89 blood sugar. But now the blood sugar's to 10. And it's rising. So there's momentum, there's the numbers change, you do not have enough insulin anymore. All that insulin goes in and tries, it tries, it tries, it can't really do anything. And then you're high and you're looking at it, like, Oh, I'm gonna have to do something. So you put in more insulin, then the food gets digested out of the system stops impacting the blood sugar, all the insulin is left behind, and you, you plummet, right? But if you just put in the right amount of insulin a little sooner, so that as the insulin begins to peak, as the food begins to impact, it's sort of just becomes it's an impasse, let's, you know, just imagine two sides pulling on a rope. But both are exactly the same strength and they can't move the rope. And that's when you see those steady lines on people's graphs. That's what they have happening. They have a balance of the need of insulin, and the amount of insulin and it's a very good balance. And that's it. So

April Davis 45:55
here's the here's a question coming back to ministration. Were you ever able to autopilot? Were you ever, ever able to like dive into your pump system? And say, Okay, we know on week one of her menstrual cycle and week two, or like the first half in the second half, like her Basal programs need to be this and our Basal programs need to be that was it? Were you ever able to get into like an autopilot situation with it?

Scott Benner 46:17
That's what we do. Yeah, I mean, I don't, I don't listen, if you're using insulin, and especially if you have type one, and you're waiting every three months for your doctor to make an adjustment to your settings, you're always going to be lost. It just, it's a thing that's happening right now. And you need to address it in the moment. So yeah, I mean, I've been changing Arden settings since I figured that out. I mean, a very long time ago, like I said earlier, in the beginning couple years, I was just doing what I was told. And it was it was not going well. And then I started seeing things, putting two and two together, recognizing very quickly, I need to be in charge of when this insulin goes in and how much it is. And, you know, and since then I've been but I would never not make an adjustment. If I needed one. Now you can over adjust. But yeah, you can't just turn dials for the sake of turning dials and needs to be a little purposeful, a lot purposeful. But that's the Yeah, that's the kind of stuff we talked about in the show so that people can understand.

April Davis 47:14
Well, and it's anyone listening to this? Who wants to know more about that? I mean, it's you have great episodes on stopping the arrows on on how to how to get your Basal, right, like Basal really, like if it's off, its off, like, and so that's you've got great resources for that somebody else we wanted to ask you about. And I mean, I feel bad that we're like really just talking about art. And you're also like over this entire community that you can draw from to but have you seen insulin resistance since introducing birth control? Because for some people, using birth control can cause insulin resistance.

Scott Benner 47:49
So I don't talk about insulin resistance like that, because I think it I think it puts an idea in people's heads that there's a magical thing happening that causes them to use more insulin, and they can't know why it exists. So I understand that insulin resistance is a thing, but I think it makes people think about it the wrong way. So do you have hormones that cause you to need more insulin? Yes. But that's not insulin resistance. That's just Yeah, it's a need is how I think about Yeah, and I know, you know what I'm saying. But I just think it's incredibly important to be clear, because it puts people into those thoughts of, oh, well, that's just diabetes, there's nothing I can do about it. I get insulin resistant once in a while. But that's not true. If you can step back and take a macro enough view, there are repetitive nature as to what's happening to you. And so if three days before you ovulate, you know, something happens. Well, then that's about what happens. I mean, if you want to think about it, yes, on resistance, you can, but I just think about it as on that day, you need more insulin or on those grouping of days.

April Davis 48:54
So you haven't seen an overall rise in like, oh, suddenly sent being on birth control, her insulin needs have been greater overall, like I'm talking like, there's an overall like, so I have PCOS, which is a an insulin disorder, essentially. And so birth control when you have PCOS can it can make your insulin resistance worse, so you're even more resistant to the insulin that your body's making. And so I always like, I wondered how that affected type ones.

Scott Benner 49:25
What at the time, yes, her insulin needs went up her. Her Basal rate needs went up. Not significantly, maybe from nificantly point eight to one or 1.1. Like right now she's in, you know, because we this, this pill suddenly not working for us. She just suddenly broke through and had bleeding. You know, like she had a period like eight days into this pillpack Which is, you know, we're like, Oh, great. No, horrible. No, it's not even to this part, you know? Yeah. And so, you know, that happen, and I watched her needs go to like Plessy About a week. And so we we changed a little bit, but not a lot. Her sights have been, I don't know if I'm right about this or not. But I think sometimes during her period, her sights don't last quite as long. I don't know if that's an overall feeling of the body just being, you know, in a mess. And maybe it's, it's in a healing process, like I think can cause

April Davis 50:23
inflammation. So typically menstruation and even withdrawal, bleeding can cause the body to go into an inflammatory state, that would totally make sense that the cannula would be that much more irritable.

Scott Benner 50:34
Yeah, so So we, you know, we're a little more on top of changing pumps, like in that second day, in the end of the day, you're like, uh, you know, I'm not getting what I expect out of this. And so we might jump off of it a little sooner, that happens a little more during her period than not good, but it doesn't. I think that the problem with this, and maybe a lot of things is that people want like concrete LightSwitch answers to things and health just as always work that way. You know, so you have to, you have to step back and you have to see what's happening. And then be proactive and do something about it. You can't just say, you know, you have PCOS. So it's going to be that way, the way it is for you for everybody, because that's not the case and diabetes, you know, is similar life is similar, right? Like, it's, it would be nice if there was just a book of answers. But it doesn't work.

April Davis 51:24
We all have totally different bodies. One, one of the reasons I wanted to do this episode with you is just a to kind of create almost a list of like, suggested like she just suggestions like we I've noticed this in my community, I've noticed this like with my own daughter managing I've noticed some of this, we've seen some of death, like just a guideline of like, if you have type one, and you're menstruating, you know this, it could potentially look like this for you be on the lookout look for your cycle, what patterns are emerging, what, which is really a gospel, I preach all the time, wait, let's look at your cycle and see what patterns we can find. As I think for a type one, you know, that's that much more important?

Scott Benner 52:02
Well, it's going to likely happen to you when maybe for some people it doesn't or maybe some people are MDI and you know, not to get like too in the weeds. But there are some people who are MDI, who aren't great about Pre-Bolus Singh, and they aren't great about carb counting. So they're endos will set them up with a heavier Basal rate to sort of like, try to lay over the sins that might happen during the day, right? Yep. So yeah, maybe because of that, like, who knows, maybe because of that, you have more Basal than you need, maybe your needs go up because of your period, and your appetite goes down. So you eat less and you don't notice that some of that extra Basal you were using for food is now being used for hormones and impact from your parents. Like I can't tell you all the things that might happen to the variable or like their mind numbing sometimes like what Scott,

April Davis 52:51
I brought you on here to tell everyone everything about everything? Well,

Scott Benner 52:55
I am telling you, here's a flexible, stop. Don't ask. Don't ask why meet the need. That's it. Like I mean, yeah, I love that. I joke with Jenny sometimes. So for people who don't know, I had a woman named Jenny Smith, come on my show one time she has diabetes for like 30 years or more. She's a CD certified diabetes educator. She's a nutritionist. She's delightful. She's very smart. And I just had, I had her on as a guest one time. And I couldn't get her out of my head. I was like, I need to have her back on the show. So I had her all the time as a guest. And I had the same feeling again. And then I told her one day, I didn't know her, like try to imagine I sent her an email. And I was like, I want to take all the little parts of like management that I talked about, I want to distill them because the one thing my podcast is, is conversational. So yeah, my goal when you're listening to an episode is that it might be entertaining, it might be fun, you're going to learn a couple of things in your hour will feel pretty well used. And that that episode will build on to another one that will build on another one kind of makes a tapestry of understanding. But I didn't have any specific like this episodes about setting your Basal insulin because my brain doesn't work that way. So the Jenny, I'm like, I have these tenants, I would like to put them in their own place. And she came on and helped me make the diabetes Pro Tip series that exists inside of the podcast now. It went so well that I was like, Would you also help me define terms? Like would you talk about variables like so she's on a lot, but she really is. She's a lovely person. She's just a guest. Like, she's not a she's not an employee. She doesn't like you don't I mean, it's just a wonderful person. And anyway,

April Davis 54:36
the diabetes world it's like, oh, can I help? Of course I'll help. I'll figure it out.

Scott Benner 54:40
It really is. It really is. Yeah, so I said to her one day you know, I want to do one about periods to like about menstrual cycle because we have like pregnancy series. We have like all stuff. Yeah. And and we're talking back and forth. And I said, you know the the truth of this is, is that this whole Things Not really a podcast, like none of it is like I should have 115 minute episode that says, Get your Basal right Pre-Bolus Your meals, learn the different glycaemic impacts of food, stay flexible. See you later, you know what I mean? Right. But it doesn't work that way. You can't just, you can't just say something to someone, and they go, Oh, okay. And that's it, and not just for this for anything. And so that's why delivering content this way. I mean, the blog was popular. And I'd get a note, you know, every couple of weeks, like this blog is really helping me but I mean, like, it's weird to say out loud, because content providers say these things a lot when they don't, they aren't necessarily true. But I hear from probably a dozen, to, I'd say, 15 people a day, about what they're about what the podcast does for them.

April Davis 55:52
It's intimate. Your inner ears, like right now, when people are listening to this, and they're part of our conversation they love like, I love hearing the stories. I love learning the lessons through the stories, I love hearing the other people are going through the same things that I'm going through. But even like the episodes where you had Jenny, that was the beginning of me finally go at like, finally be like, oh, oh, I need to do this. I need to try that. I didn't even think about this. My doctor never covered that. I didn't know what this acronym stood for. Yeah,

Scott Benner 56:21
it's just it and you can't just give it away. In a sense. It's not a blog post was nice. It didn't work, right. You know, trying to do it on Instagram, that's a fool's errand, you're not gonna be able to do it that way. It's,

Unknown Speaker 56:32
it's a good time, let me tell you.

Scott Benner 56:35
Doing this, the and kind of maybe underappreciated aspect of it is, is that if you're not a good communicator, and you're not interesting, it doesn't matter if you have the secret to life, 45 minutes into your podcast? No, make it to it, you know. So it has to be engaging. I think one of the things that I've done, if I can take credit for anything is I've taken a very dry medical heart, yet hard to understand. And I've made it fun somehow. And you know, in that, so weird mix, and I don't think that's what most people wouldn't think to do that, they would think that there's an appropriateness that maybe goes away, but like, I listen,

April Davis 57:17
brazen, I think your brain, appreciate it.

Scott Benner 57:21
I'm just old, I don't really give a crap what anybody else thinks. But I just I grew up in a time where entertainment was, you know, it needed to be entertaining, or you'd shut it off. And I think the same way about this, and I, at the same time, feel very responsible for the people listening, you know, so I don't want to give them bad information. So that I have an episode. And then that goes into what how do you make a podcast over and over again, I interview people who are just regular people, like I avoid, like the plague anybody in the diabetes space who has a name for themselves. And I really know them. And I legit know that this is something I want to do. Because people come off this practice then. And they have sound bites they give and they're trying to direct you back to their Instagram. And I'm like, like you, you've been very kind to a couple times while you're talking, if you like inserted the name of the podcast, like, I don't care. Yeah. Like, I really don't care if nobody listening to this comes unless I

April Davis 58:16
do I want anyone that listens to this, I have type one, I need you to stop when you finish this episode, I need you to go straight to the Juicebox Podcast, I need you to look up all these basic episodes that he's talking about with Jenny. And you just start at square one and listen to all of them. And then you can go back and listen to Scott go on and on and on about whatever with whoever, then that's great, too. But the defining diabetes, the diabetes, basically all those series, those are essential listening for someone managing type one diabetes, like there is nowhere else you're going to get this information. There's no books. There's, I mean, it's your blog, and like you said, like so many of these other diabetes blogs, they're great. They're front and there's a lot of commiseration going on. But there's not a lot of actual real like, no, if you do this, it will get better. Yeah.

Scott Benner 59:02
And it's right. And it works for adults too. Which Yeah, I hear a lot of times when people like oh, well you're the father of a kid with diabetes. I thought this was for kids. And it's not it's it's for no using insulin, any diabetic

April Davis 59:13
that's been diagnosed for any number of years. I've been doing this for four years, and was still like, oh my gosh, how did I know I already know this. Why did no one tell me that I or this sounds familiar from she got diagnosed four years ago, but no one's ever brought it up since then. Like that's terrible that like and like you said to if you're waiting to go see your doctor, we go every six months. Hey, we need to change doses until every six months. That's why she's been mismanaged for the last four years. Like you can't wait that long. Like there's so much there. Well, I'm gonna wrangle you in though we got to talk about masturbation.

Scott Benner 59:47
All right. Well, what I do it and I'm just kidding.

April Davis 59:52
So diabetic masturbation got

Scott Benner 59:55
I have a bustling Facebook page. That's a private Facebook page for the podcast. It has 15,000 plus people on it, talking about, you know, diabetes and living with it and management of it and that kind of stuff. And I very much run that Facebook page the way I talk. I don't Yeah, I don't look at it. I don't care what people say to each other. If you say something that insults somebody else, you better figure it out amongst yourselves because you're adults, and I'm not your mom. And I saw how

April Davis 1:00:23
beautiful is it? I don't see a lot of that going on on your page where people are friendly, respectful, and also quick to be like, No, we don't do that. You're sorry. I

Scott Benner 1:00:30
like it. When people step up and go Scott would not like this if he saw it. Because one of my rules for the Facebook site page says if this becomes a pain in my ass, I will close it. Like I really

April Davis 1:00:39
don't know, I don't blame you. I haven't started on myself because it's too intimidating to me. So like, this is incredible. So

Scott Benner 1:00:44
whereas other people might start a Facebook page thinking this will feed my podcast, and I just don't care. Like it works because it Yeah, and it works because I'm hands off. I run out Facebook pages the way I parent my kids and I live my life like your you'll figure it out like you don't need me. And yeah, listen, if somebody says something terrible, or a scammer comes in or something like that, I take heart I take care of that right away. But if people disagree, you know, we're like, oh, this is uncomfortable, like, well, you either better be comfortable or look away because it seems okay for these people who were interested in. But anyway, I watch these people have these great conversations. And one day, somebody says, Oh my god, I just realized my son's blood sugar goes up when his bedroom door is locked. And, and hundreds and hundreds of comments later, I was like, this is an episode of the podcast, right? Oh, yeah. So I get Jenny on to do a variables episode. And I and I wish you knew I don't pre plan. So I'm like, Jenny, Hey, today, let's talk about orgasms. And she's such a lovely woman, and she's from the Midwest. And she's like, Oh, okay, that's like, this is gonna be more fun listening to her be uncomfortable than anything else. But so I watched these people talking. And then it all started making sense. But then Jenny and I talked through it, and we even kind of found more like, like, if you're, if you're going to masturbate at home, and you're an adult, right? You probably just like, Ah, I'm going to grab a towel. And I'm going to use a little bit of this, and I might grab a vibrator, or I'm going to use my hand. It's not a big deal. Easy. But if you're a 15 year old boy, and there are people in your house, you're like, Oh,

April Davis 1:02:24
I got yeah, there's excitement, all

Scott Benner 1:02:26
that starts hitting you, and it makes your blood sugar go up. And then lovely. Like adult women in the group came in and said, I gotta tell you, it doesn't work the way for me, but I get a little low afterwards. Yeah, right. And I was like, Oh, this is fasting. So. So then, you know, I so I guess like, best. I'm sorry. Like, I'm such a child in my heart. Like when I hear hormone I think of like, I think of like a joke of when I was 12. How do you make a hormone and when I think of girls masturbating, I start thinking about weird euphemisms like flicking your being and stuff like that. And I get all like, inside like a small child. Anyway. And then I started like, you know, I'm trying not to be creepy, but the thought of girls, you know, and jerking off is my favorite euphemism for female masturbation, because it seems like it doesn't fit anyway. Yeah, point is we like when they go to do that. You get that build up, obviously. But then the release and the release comes maybe a bit of relaxation. And people don't, and people don't recognize it. Some of your insulin need can come from stress. So yeah, so if you don't have all the vigor of intercourse, that might bring your blood sugar down, because that's another thing we talked about, you know, with adults having sex, like, it hits men differently than women. They have food by their bedside, like there's all this stuff. But so if you just kind of cruise into it, like an adult, and you've had a stressful day, and you bang one out real quick and you're relaxed, your blood sugar might start to go down. And they might not back that because you think about excitement, or shouldn't it go up? Well, if I'm a 15 year old boy looking for a quiet room, I might be like, Oh my god, I saw this girl on Instagram. And I really need to go find a private place to be, you know, like that those impacts will be different. So stress, anxiety. Those things impact

April Davis 1:04:13
hormones. Insulin is a hormone, like it just was like such a like I had never considered it listening to this morning was like, Oh my gosh, of course.

Scott Benner 1:04:22
And it doesn't even have to have an effect because a hot shower, a hot shower could bring your blood sugar down. And some people think, Oh, hot showers make my blood sugar fall, well, maybe that's the case. Or maybe you're all uptight. And you know, maybe you're an uptight person, and you have a Basal rate of 1.5 an hour. And when you relax, that Basal rates too heavy, and it makes your budget too much. Yeah, and my point is, is you're never going to really know. So instead of trying to figure it all out, just know where to look, see it happen, recognize a pattern, and then you know, make an adjustment afterwards like you know, maybe you know, maybe you Need a snack before you, you know, you do your thing. Or maybe you, you know, maybe you can't have a meal and then jump right into the shower. Like, you know, like little like because you've got all this active insulin like, the point is, is that I don't know. And I can't say something definitive, that fits in a nice bullet point list that's going to make your life with diabetes better. But I can have conversations with people so they can bring up what's happening to them, we can think it through the best we can, and maybe you'll find some sameness and that it'll help you like, that's how I think about it. But I

April Davis 1:05:30
love that because I think that's all it is, is going hey masturbating, it might affect your blood sugar, your menstrual cycle might affect your blood sugar, it might, he might, because you're cyclical, you're going to maybe know some patterns with your menstrual cycle with your blood sugar and how you manage your diabetes and masturbation. And I also love even bringing that up, because it really also shows like, there's a lot of topics that you've covered on your podcast that are somewhat taboo. Like, if you go into your doctor's office and go, I would like to use illegal drugs or drink alcohol, and how would I manage my blood sugar? They're gonna go a I don't know and be don't do just don't do that. Yeah, right. They're gonna think you were like, no, let's actually talk about it. Like that's like, these are things that actually happen. So let's just talk about it. I have

Scott Benner 1:06:14
had amazing conversations with people who are just I interviewed a lady two months ago and just went up recently, she's 62 years old. She said diabetes forever. And she has cancer, blood, everything, had a wonderful conversation with her. I've also had a conversation with a person who was diagnosed with type one diabetes during a heroin bender. I, you know, like, I I think all of those conversations are real like to pretend that people with diabetes, don't use heroin is ridiculous to to think that they might not drink is silly. Like, you can't just talk to people about the parts that are polite company stuff, because it's not really the answer. Like they need a real answer. And I'm not telling you to use heroin. And if you commingled, what I just said with that idea. Yeah, I think you're insane. No, you know, that's not it. But yeah. I mean, I've had conversations with people who are bipolar and have type one. And how about Yeah, after having a number of conversations, hundreds and hundreds, I start hearing the word bipolar and people's like, binds and then I start thinking, is bipolar disorder, an autoimmune disease? Where does it have any link to that? Because people with type one, quite frequently have other autoimmune issues? Or in the family? Maybe, right? Totally. And I wouldn't have, like, put two and two together like that. Had I not had so many of these conversations and met? Like, listen, quirky, people are fun. You know, like I can, I'll tell you what, for years, I've been trying to get somebody on the show has been in prison. And I don't mean, like, over the weekend, you know, cuz like,

April Davis 1:07:44
type one, I want to listen to

Scott Benner 1:07:46
that. I want to talk to somebody who has been in been inside and had diabetes, I want to know what that's like. And yes, it's a hard thing I've had, I've had four people booked for it. And they always drop off. And it's usually to do with

April Davis 1:08:00
oh, gosh, they end up back in prison.

Scott Benner 1:08:04
There's concerns about their parole, usually. Oh, yeah. I don't want to tell stories that maybe put them back in trouble. So I keep trying, and I keep trying. But I mean, I have one up today about woman came on to talk about her eating disorder. I listen, I got an email once from somebody who said, I was assaulted in college, I was raped. And it impacted my, my diabetes care. And I want to come on the show and talk about it. And I thought, Oh, my God, there can't be an hour conversation about her impact over control. We're gonna end up talking about sexual assault, right? Like, okay, I'm like, let's do it. And so she got on. And before we started, I was like, Are you sure about this? I was like, because I am not sure I'm me. I'm gonna say something stupid during this at some point, you know, she, she was only the show, you're going to be okay, let's do it. And we did it. And she thanked me when it was over. And she's like, this is terrific. Put this up just like this. And I said, Oh, okay. And then I don't blink an eye. Like, I know, some people might think like, oh, God, I'm gonna get like, cancelled, or I don't know what you guys do to people online anymore. But I don't think about it that way. I'm like, This is gonna help somebody. And you know, listen, it's in the title. When it starts, I'll say, Look, we're going to talk about this today. You know, I'm not a person who understands the idea of being triggered by something, but I do know that some people are and so I want them to know, but at the same time, you can't spend so much time papering things with oh my gosh, be careful this and be careful that don't be this you'll never get to the damn content. You always be apologizing for it. And this stuff,

April Davis 1:09:45
this is another reason why I feel like your podcast is so useful and what we're missing in a lot of ways and this and it's community.

Scott Benner 1:09:51
We're not missing it. I put it out four days a week. What do you think of that? It's Yeah, right here. Exactly. I am a whore. I put my content out like But I'm but I'm very proud that I don't think that there's, you might find a episode that you don't jive with somebody or maybe there'll be a time where I talk a little too much or not enough or whatever. But overall, I don't think there's a clunker in that podcast. Like, I don't think episodes you'll turn on and go like this was a waste of my time. So yeah,

April Davis 1:10:20
everyone is interesting. I learned something from every single one of them. And, and that's ultimately why I love having mine. Because I hope the same I hope that people can take away something from every even if it's not applicable to them. I hope if someone's made it this far in this episode that doesn't have type one that they learned something new today and still have something that applies to them personally, even without type one diabetes.

Scott Benner 1:10:42
It from my listen through rate is 93%. And if there aren't a lot of people still listening, I'm insulted. And I wish they were listening so I could tell you I had no choice to stay and listen, I'm terribly interesting. But I have a couple of vagina questions because I feel like you're gonna kick me off in a second. So absolutely. All right, labia, is it majora and minor or is it minority? Because I'm enormously mature and labia menorah? But isn't a menorah? The thing you put candles in at the high Hall also that why would they do differently? But why? It's terrible. So alright, so Majora is that the

April Davis 1:11:21
external lips? Okay,

Scott Benner 1:11:22
so let me back up. Some ladies have like nice like smooth presentation, and some ladies have a more general presentation. Those are the Majora Yeah,

April Davis 1:11:31
it just it each snowflakes vulvas are like snowflakes. Each one is different. Each one has different measurements and things some have longer outer lips, longer inner lips longer both. None. snowflakes,

Scott Benner 1:11:45
okay? If you have bigger outer lips, do you need more lubrication?

April Davis 1:11:49
Depends on you. Some people really like naturally lubricate super well. I always tend to lean on like, you know what, if you're worried about add lube, it rarely is about idea

Scott Benner 1:12:01
couldn't get caught, like in a foldover situation to be unpleasant?

April Davis 1:12:04
Absolutely. Like I my joke to with like, I'm pretty not against plastics or like I'm pretty against plastic surgery in that area. Like it's bothers me that this has become such a mainstream thing because it is so unnecessary the majority of the time. But my joke is like if if your baby's getting stuck in your zipper, like maybe maybe you could potentially lose a little bit of it and be okay, still, you know,

Scott Benner 1:12:26
get your wings clipped, you're saying no. Yeah. Like, like, would you that's the

April Davis 1:12:31
problem. There are nerve endings and every single bit of that tissue and so anytime you go in and start sniffing around, you could potentially take off portions of the clitoris by messing around about because people always think of the cartridges that little teeny tiny, but that's under the clitoral hood.

Scott Benner 1:12:47
The hard part does

April Davis 1:12:48
the Yeah, like your dorsal nerves go down into like, your labia or what's covering the other portion of your clitoris. So you have to be really careful when you start messing with that. And unfortunately, doctors are not as well informed about this because really, it's been only in the last few years that they've even agreed on the anatomical terms for all this most medical textbooks do not teach what a normal link is what a normal depth is. And so you may be dealing with a doctor who's just practicing based on like, what they feel like

Scott Benner 1:13:23
I don't like that keep your lips now. Nor are those the little ones towards the hole more like the interior more that'd be the menorah. Yes, I'm testing myself because I've been married for 25 years. I haven't seen a vagina in a while. So now the the thing at the top the mons pubis, is that where the hair grows? Yes, yes. Why is that got such a Why does everything have a weird name? I don't know. How do we get I don't know. How do we get dick and balls and you get mons pubis? That's really ridiculous. Great. Hold on If

April Davis 1:13:55
you haven't yet frenulum and the shaft.

Scott Benner 1:13:59
Please, please don't say that's the part that connects the testicles. vast difference. Yeah. That's inside stuff. I don't care about the entire part. I just care about what I can say. I have other questions is squirting real. Where our Lady seeing themselves what is happening?

April Davis 1:14:16
absolutely real. So sporting is typically fluid coming out of the scheme's glands. So the same glands that lubricate the vagina can also have a buildup of fluid with stimulation. And that buildup of fluid through stimulation, which typically is internal stimulation, which which feeds to critical the g spot which is really kind of the backside of the RF. Typically that type of stimulation can help build up fluid and Askins bonds and then when females ejaculate, that's what their Jack elating is this lubricating fluid. If they do, it can be learned. But not for everybody just depends on the body.

Scott Benner 1:14:52
You just said something fascinates me. The G spot is the it's like knocking on the back door of the tourists. Yep, totally. For the Finger thing is real.

April Davis 1:15:02
Oh, absolutely. It's that Oh,

Scott Benner 1:15:04
I knew that. Hey, how long you been married? Come on. No, it's right. I'm trying to be a little bit too. What else do I have? Okay, I have other things, you know, I only have pornography to go by. But when guys look too big to be real, where does it go? We're just talking about length like, like, where does it disappear to? Like the old joke of like, it looks like it's in her stomach kind of feeling. But where

April Davis 1:15:33
does it keep it vaginal? tenting is real, like, that totally happens. And you would be amazed at especially if, like, let's say you've maybe overused some of these areas of your body, they are all capable of stretching. You have to think that like kids come out of there, right? So like, this whole area was built to stretch and accommodate. And so like, to a certain degree, you can stretch and accommodate.

Scott Benner 1:15:59
Okay, so when whenever the hole when something that like I'm just giving away that I don't have a giant penis, but when something that big looks like it's disappearing, it's still inside of the where it's inside the like, you're trying to really care, Lord.

April Davis 1:16:15
Absolutely. Thank you. Yeah. Because your your cervix is nice and tight. Like it's, you're not poking up further past there. And like you said, stretch and accommodate is like the scale of the vagina.

Scott Benner 1:16:27
The cervix is the thing. Like if you go too deep, feels like it's almost like a little butthole inside but stronger, right? Yep. Yep. See, I know that's a great way to describe it. Thank you. It's very, very

April Davis 1:16:41
interesting, like even your cervix, it pulls forward, and it can tuck back depending on where you're at in your menstrual cycle. So and it moves it hangs down in the vaginal canal. People think it's the end of the of the road. It's actually hanging down into the tall. Interesting.

Scott Benner 1:16:58
All right. What's the How come some of the fluid looks clear, but some of its creamy sometimes.

April Davis 1:17:07
That's so your cervical fluid actually changes as you go progress through your menstrual cycle. So we men straight, we have a couple days of dry. We then start with crumbly. So this is a cervical fluid that's maybe not super cold, like great for sperm. We progressed from crumbly and dry and kind of sticky to creamier, more lotion like smart mucus to suddenly we got a very, very fluid, watery egg white almost fluid, that fluid is really conducive to sperm, they can live in that they love that crap. Like they can live there for up to five days. And then after you ovulate, you'll feel taper off with what your cervical fluid typically have a period of like dry, and then you go back into your month like even straightening blade. Okay. That's

Scott Benner 1:17:53
why the boobs get different during periods. Like that's hormones.

April Davis 1:17:59
Yeah, it's a hormone. Estrogen. I believe it's estrogen that increases boob size, if I remember right, but also

Scott Benner 1:18:06
sensitivity, right?

April Davis 1:18:08
Oh, yeah, totally. And you may have some people who like can't have their nipples touch one single itty bitty bit when they're menstruating. And then two weeks later, when they're ovulating, they want you to like bite on.

Scott Benner 1:18:19
Girls are weird. That's all I know. It's not your fault. But Jesus God, that's a lot of information. Well, it

April Davis 1:18:25
can't be you have to think like coming from a male perspective, right? You have a 24 hour hormone cycle. So at 11 o'clock in the morning, every day, your hormones should be exactly the same. We have a 20 to 32 day hormone cycle. So we're only the same critters 12 days out of the year.

Scott Benner 1:18:42
No I that I've noticed. I've said to my wife, is there a reason we can't put like an indicator light on your forehead that says, you know, you're like how you're feeling so that I don't come at you from the wrong angle and say the wrong thing. And I like that. I don't mean it. pleasingly. It's just she at and I don't, you know, I don't ascribe fault to it, obviously. Like, it's just it's the natural cycle of things. But my goodness, like you're like, Wow, there's so much happening. I genuinely have him. Yeah. And then on top of that, boys, constantly chasing around trying to find your vagina. That's really our main focus. But it's fascinating that I it's I'm 50 I have my children. And it is hard not to think about still, like, oh, yeah, it's difficult not to just like every girl you walk past you're just like, like, there's an internal thing in your body and you just think like, oh my god, that one's cute. That one's cute. This one isn't but I don't care. Like it's a real weird thing. Our brains work.

April Davis 1:19:41
I think you come at life with a certain degree of curiosity too. So I don't even know that that's always sexual in nature for everybody. I think when you're a curious person, and you want to know all the things about all the things of Krishna like What do you smell like?

Scott Benner 1:19:55
So you're right about that? Because art when I when we walk past a person Buddy are questions or, or impulses to say, did you notice that whatever are always exactly the same? That's interesting. Yeah. And we're just similar. Yeah,

April Davis 1:20:10
I don't. I think we try to make so many of these things like weird or sexual or only boys or like, you know other stuff. And I really think that just comes from being a generally curious person.

Scott Benner 1:20:19
You've helped me. Thank you. Alright. Do you have questions written down that we didn't get to?

April Davis 1:20:24
Oh, my goodness. I mean, I always ask everybody how they like to manage their period, but I think you're excluded from

Scott Benner 1:20:34
a little basket on the bowl. Right, even it's got absorbency, isn't it? I do know that I restocked them for the girls in my house. Oh, yeah. That's all I know about that. Good. I we change the sheets from light lighter colors. Sometimes. Yes. Right. That's important. That's a good one. We make sure there's like, spray and wash around the house. That's all I have. I yeah, you're not you're not really married to a woman is called you and said, Hey, take these upstairs and get me another pair. And then you're, then you're a real married person?

April Davis 1:21:07
Absolutely. 100%. That's

Scott Benner 1:21:10
not what people usually say. I'm gonna let you know. It totally depends

April Davis 1:21:13
on the person some people manage. I mean, it's there's so many different alternative ways to manage your period these days. So like, we've gone so far beyond like, pads and tampons, there's menstrual cups, menstrual period panties, sea sponges, I mean, rebleeding. Like, there's a whole world out there of ways to manage. And then on top of it, like there's some of the rituals of like, yep, when I menstruating, I always try to like to drink this or eat this. And this helps with this, or this is how I manage my cramping with this or you know, so it's a

Scott Benner 1:21:41
fork like a coal milk thistle,

April Davis 1:21:42
everyone's different.

Scott Benner 1:21:45
I think you're, you're you're not you're less helpful than I was, when you asked me questions about diabetes. I'm like, I don't know you gotta try. Exactly. I appreciate you asking me to do this. I'm sorry, if I took over, I don't really know how to, um, I'm not a good guest on people's podcasts. You're fantastic.

April Davis 1:22:03
I think this has been a really beneficial conversation, I hope so. I hope anyone who's listening to this, especially with type one, or even managing a type one will have a little bit more insight into thoughts to have around it, things to consider right curiosities to have around different things that could potentially make it easier to manage.

Scott Benner 1:22:22
I appreciate that. And by the way, on a more personal level, I appreciate that my show has been valuable to you and that you were very coach, when you reached out huge, that was lovely, life changing. See, you don't make me feel weird. But I mean, I'm stuck in the middle, because I want you to say nice things. But then I get that. I get that goofy feeling in my chest when you say something. Yeah,

April Davis 1:22:45
I love you deeply and you have saved me and my child's life. Know that you're an important member of the Davis family now.

Scott Benner 1:22:54
I really do appreciate it. I really do. I mean, that it helps anybody, you know, listen, not to be boring at the end. But you don't start a podcast thinking it's gonna become incredibly popular. And when it happens, you there's an amount of time where you're like, you want to make sure you don't freak out because you're like, I just need to do what I'm doing. Because what I'm doing works. You don't want to examine it too closely. And when when, when I got into the situation where people were saying things like you just said, and they send emails all day long, and they post online to tell you, you don't want to minimize anyone's feelings. But it's sometimes it's weird for me, like sometimes at 11 o'clock, you are the person who's told me I've saved your life. And it's I don't feel like it's not trite to me. But I'm tired. And sometimes I'm like, Oh, thank you. Like, you know, you email back and you're like, I really I'm glad you like the podcast, but I don't know what to say sometimes.

April Davis 1:23:51
Isn't that the best thing that we can see? Because I get the same thing like people will show really, really intimate and deep things with me about you know what, what, like they've they've run with something I've said that has been so helpful for them and seem like it is overwhelming to me sometimes. It also motivates me and keeps me going. So it's like gas in the tank every time but it is also overwhelming to like take on and also like the trust that people have in you can be very overwhelming.

Scott Benner 1:24:18
Yeah, you just said something interesting. Like the motivation part of it. It's not that you're not motivated. It's just like my podcast is a full time job. I work at it six days a week. If you hear an episode, I put 10 or 12 hours worth of my effort into you hearing that our right yes. And having ads on the show is actually it's I mean it's monetarily it's good, but it's good for me because I'm I have to put an episode out when I said I was going to and totally and it has to be good or Yep, people will stop listening and if people stop listening now I've sold an ad to somebody that they won't be served on like there's it feeds

April Davis 1:24:56
oh I'm I'm in your same boat but on Instagram. I hear you and it is I find lane and it is a balance because I've got to create enough fantastic content that it stands on its own. But I can justify doing sponsored content and advertisements because I want to make sure to meet the needs of my advertisers. I also want to make sure those advertisers are serving my clientele. Yes. You know, like, it's, but I think you've also done that really well. It's funny, I was already on Dexcom and Omni pod, but every time I listen to podcast, I'm like, Man, if I wasn't, we weren't using it. We wouldn't be by now my

Scott Benner 1:25:27
favorite email came from a grown man that just said, the subject line was Omni pod. And the body of the email literally just said, Okay, fine. You win. I'll get it. Yeah, I thought that's hilarious. broken down, one by one. It's, it really is. Um, I mean, I honestly, I'm 50 years old, you tried to imagine that when I was in high school. Everything that I'm doing right now, wasn't just a thought it literally didn't exist. Like nothing that I do right now was real when I was deciding what to do and very strange, you know, and you find this, this space where you're helping people, and you always kind of have a quarter of an eye out to the future, like, what's going to change? Like, how do I have all this? If it shifts? And what do I it's, you know, I don't know, hopefully, I mean, how much longer can I do this? I always say to people, like, begin to, you know, listen to a 65 year old guy who doesn't have diabetes tell you about diabetes, like, at some point, it's gotten right? Ah, but it's growing still, we just hit a major milestone the other day, the show got its 4 million total download. Which, which was just amazing, because it took you know, for anybody who thinks about putting content out you want to be super like, I don't know, you feel like you want to be successful at it. I had more downloads last month than I had in the first two years of the podcast combined. And it took four years to get to a million. But then once I got to 1,000,002 million came quickly, 3 million came faster. Four came faster than that. It's it's not just about being there and tricking people to come see a thing. There. Actually, no, there's to be something there for them when they get there.

April Davis 1:27:13
Yes. And you're providing the you absolutely are. So if you're listening to this guy's gonna head over to the Juicebox Podcast, go find the juice box Facebook group. He even has an Instagram. You don't do much over there, but you have one.

Scott Benner 1:27:27
I'm 50 What am I gonna do with it? I tried to put up like when episodes are coming on. That's not what people want for Instagram. So I mean, if I get into a bikini, which I think is how Instagram works, I don't think I don't really feel like anybody's gonna want that.

April Davis 1:27:43
You're trying to be we don't know.

Scott Benner 1:27:44
No. I'm pretty certain nobody wants that. So I, I have it and it's there. Listen, I'll tell you this. You're already a podcast listener, just search Juicebox Podcast, type one diabetes. That's it. You'll find it wherever you listen. If you want transcripts there at juicebox podcast.com. For every episode, that was another thing. I didn't understand why people started asking for transcripts. I have listeners who don't listen to the show. They read it. Yeah, they just read. I don't know that. But God bless them. And like, you know, like the whole thing. So it's there. I'll tell you this. My daughter has a one C has been between five two and six two for over seven years. She does not have any diet restrictions. I think if you listen to that podcast, you could easily have an A one C in the sixes and if you really wanted to work at it, you could have it in the fives and I stand behind that nothing none of its medical information like I have, you know, you know, I do that thing. I'm like, I can do it my sleep reading matches. Nothing you here on the Juicebox Podcast should be considered advice, medical or otherwise, please, always consult a physician before making any changes to your healthcare plan. Or becoming bold with insulin, which is just something I said in Episode 11. That resonated

April Davis 1:28:54
which is a fantastic disclaimer for this episode here on the vagina blog podcast. Please take that into account.

Scott Benner 1:29:01
Listen, not only am I not a doctor, I might be a moron. So great assault you don't I mean? Oh yeah, thank you. Well,

April Davis 1:29:09
thank you so so so much Scott for being here today. I so appreciate your time.

Scott Benner 1:29:13
I really it was a pleasure. I swear to you, I might start answering more of these emails. just deleting Would you please call my delete? We would like no delete leave me alone. I'm busy. Vagina. What's this now? You got me so if anybody right vagina and email at least read it.

April Davis 1:29:37
There you go. Thank you so much course.

Scott Benner 1:29:52
Hey, how about a huge thanks to April for inviting me on the vagina blog podcast, and for letting me run the audio here on the Juicebox Podcast. GUEST hope you guys had fun listening. If you're interested in April's podcast, check it out again. It's called the vagina blog podcast. It's all about vaginas. I don't I've never heard it. I don't know what else it's about. I'm sorry. But I bet if you had a vagina you'd like it. Also want to thank Dexcom for sponsoring this episode of The Juicebox Podcast and remind you to go to dexcom.com Ford slash juicebox go say hello to Dexcom

thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast.

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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.

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The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

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